tag:blogger.com,1999:blog-28794660659734318182024-03-05T09:00:28.623-08:00Fighting For It.The Adventures of a "Spoonie" J-Poucher: from Rx drugs to surgery to total disability... the daily fight rages on.Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-2879466065973431818.post-65867107394330760222019-01-12T09:12:00.000-08:002019-06-27T17:16:02.409-07:00Rejuvination<div dir="ltr" id="docs-internal-guid-b3036802-7fff-376a-ac58-61dbb1bd3fa0" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"><i>When shit happens, turn it into fertilizer.</i></span></div>
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<span style="font-family: "arial"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: xx-small;">-Kute Blakson</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJoKHNmil81ESPRd0G1BUY4fDbz5bjWXbBgW2AFTjtg7x2BT0s1aiTXx7XoVYR7Mv0d70QTOiO4xEPZGDN7-I65MbALRbstN6uS0VLBkyn4_Bv6vbsapt2sK_rudCjssbCdgKNIg-k2oC2/s1600/Racer.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="540" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJoKHNmil81ESPRd0G1BUY4fDbz5bjWXbBgW2AFTjtg7x2BT0s1aiTXx7XoVYR7Mv0d70QTOiO4xEPZGDN7-I65MbALRbstN6uS0VLBkyn4_Bv6vbsapt2sK_rudCjssbCdgKNIg-k2oC2/s200/Racer.jpg" width="112" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV_8WV5RVKmIJjFkTutwM8wJnmCqlwFpvbdJkmYVoD2In1_yrXBwqB7G3kxa9Mi5ZchNvplSCeKf3TtbCnrXZLtOHc4R3XlXwaGaQS2UVezuWXqv-YiNBeVqctZe4EqJGF-yqrRCWHVTdd/s1600/missing.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="920" data-original-width="640" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV_8WV5RVKmIJjFkTutwM8wJnmCqlwFpvbdJkmYVoD2In1_yrXBwqB7G3kxa9Mi5ZchNvplSCeKf3TtbCnrXZLtOHc4R3XlXwaGaQS2UVezuWXqv-YiNBeVqctZe4EqJGF-yqrRCWHVTdd/s200/missing.jpg" width="137" /></a><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">From the beginning, this blog has always been about staying fit through chronic illness. Three years ago when I suddenly became totally disabled from a new disease called myalgic encephalomyelitis (M.E.), my world was turned upside down. One huge obstacle that differentiates this illness as unique is called </span><span style="font-family: "arial"; font-size: 11pt; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">exercise intolerance</span><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">. It means that when I exercise, my disease is not just exacerbated but progresses to a new level of severity, which means my tolerance for exertion is that much lower, requiring even less energy to cause another crash and reduce my exertion threshold even further. This can create a downward spiral that is sometimes impossible to escape, leading people with M.E. to become essentially paralyzed in their beds, unable to even move their arm or have the energy to digest food. Many are fed through NG tubes and/or IV lines... Corpses that spend years in bed, unable to move or even tolerate touch from a loved one, alone in their agony and waiting for a cure. (<a href="https://stanmed.stanford.edu/2016spring/the-puzzle-solver.html" target="_blank">Whitney Dafoe</a> is one example.)</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">This was an incredibly difficult lesson for me to learn. I even tried just walking for fifteen minutes a day, and that would steal all of my energy for the entire day and plummet me into a crash. I was physically broken…. which led me to be emotionally heartbroken as well. As my few loyal readers know, physical fitness has ALWAYS been a huge part of who I was. In addition to many other parts of myself I felt I had lost from this disease, it had also taken away my athleticism. I started to fear atrophy and deconditioning, something I don’t think I could live with.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0WUPhyG87DB_LLYsYGaFgyvubp-aHOFpF-NXQ43l-wxeCtb3y3C_49ZKF0yEiENVfAESwsOFx4YJQOA5kUeXAGLJVOyqn6MRM1e_eu5eTn0lvY0T6dA4aY_Xznb_jmTod6tYEOaGmJsFN/s1600/20190112_082806.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="534" data-original-width="834" height="255" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0WUPhyG87DB_LLYsYGaFgyvubp-aHOFpF-NXQ43l-wxeCtb3y3C_49ZKF0yEiENVfAESwsOFx4YJQOA5kUeXAGLJVOyqn6MRM1e_eu5eTn0lvY0T6dA4aY_Xznb_jmTod6tYEOaGmJsFN/s400/20190112_082806.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>I used to use charts like this to train, but this chart is no longer accurate for me </b><b>since </b><br />
<b>M.E. drastically changes our maximum and aerobic heart rate zones. </b><b>Having just </b><br />
<b>turned 39, </b><b>I am now probably closer to the numbers for </b><b>someone in their sixties.</b></td></tr>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">But that soon became the least of my concerns. I didn’t even have enough energy to wash my hair </span><span style="font-family: "arial"; font-size: 11pt; white-space: pre-wrap;">or shave my legs. I would crash and be stuck in bed for a full week from cleaning the house or going to the grocery store. Even my super-gentle therapeutic yoga class designed for the chronically ill and elderly was far too much for me to endure. </span><span style="font-family: "arial"; font-size: 11pt; white-space: pre-wrap;">My heart races like I’m running a marathon just from standing and walking across the house. Suddenly fitness was no longer a priority compared to survival. As I write this even, it has been several days since I’ve showered.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPdGMl9Bh-Wa4mS7RGw5zVcKHMqxoQw_hO1oDaKRHmKA9__TMnir_jG6bbSOKUf_wPCBE_L7LpOKOXpCKIp9nkoTGiiudRDqVC8go8Cf8irM3DKnxnZY_Jp0P1PnAs1ER4gMvanIl_z3O/s1600/walkin.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="702" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPdGMl9Bh-Wa4mS7RGw5zVcKHMqxoQw_hO1oDaKRHmKA9__TMnir_jG6bbSOKUf_wPCBE_L7LpOKOXpCKIp9nkoTGiiudRDqVC8go8Cf8irM3DKnxnZY_Jp0P1PnAs1ER4gMvanIl_z3O/s200/walkin.jpg" width="146" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>My HR varies day to day<br />or minute to minute</b></td></tr>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">However, my close friends, family, and loyal readers know how driven and passionate I am, especially when it comes to my goals. I am and always have been a “go-getter”. </span><span style="font-family: "arial"; font-size: 11pt; white-space: pre-wrap;">Six years ago in this very blog, I decided to do the impossible when in a somewhat similar situation. I was on an immunosuppressive drug that actively turns muscle to jello and causes major weight gain and swelling. Doctors, online sources, and everyone who’s been on this drug for longer than a few weeks knows this to be true without a doubt. I decided after several rounds of this god-awful “therapy” that I was going to do the impossible. I was not going to let it get the best of me this time, and I fought against the effects of the drug. With sheer will and determination, I proved to myself and the world through severe calorie restriction and continued running and weight-lifting that I could not only prevent the weight gain and disintegration of my body but actually gain muscle tone.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt2FYtQFfgmu4-I8RroHPc3B4juGPhNn-hRRMNvfnrN5LhbJDHmHD6cGwH9hhyphenhyphenHkZI6z5s0WChfn2ZmBfuP5qnRCiQF7yPFaRxN4xIY8ETzbYLGYRI305szI74Dapmr_0wxwTdU_lG-M4s/s1600/survival.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt2FYtQFfgmu4-I8RroHPc3B4juGPhNn-hRRMNvfnrN5LhbJDHmHD6cGwH9hhyphenhyphenHkZI6z5s0WChfn2ZmBfuP5qnRCiQF7yPFaRxN4xIY8ETzbYLGYRI305szI74Dapmr_0wxwTdU_lG-M4s/s320/survival.jpg" width="320" /></a></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Over the last three years since I’ve had this new chronic illness, it has been proven to me time and time again through not only personal experience but through clinical studies by the experts of this disease that exercise is not only hurtful to our bodily state, symptoms, and prognosis but also very dangerous for anyone with this disease. But I have learned a lot since writing this blog AND since becoming ill with myalgic encephalomyelitis. I have been absorbing knowledge like a sponge about what and how and why we cannot tolerate exercise. I’ve learned about pacing and how to prevent crashes. I’ve learned how to listen to the tiny, minute signals from by body telling me that I’ve had enough. Letting me know that one more move will cause a crash.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgheBPS1ODbNV12RCUL3JzTp96vZxacIMs9VxGlpGDEZFVX4r8ltBMmQUkSK8S89Nu_33SVlltJUNGTSlyKpsxwBw7vducsq5rzYZbMmW1nbbCdPH45O7WdtiKE1ljMWyCuhyphenhyphenCxmSjjD2oG/s1600/face.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="958" data-original-width="960" height="199" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgheBPS1ODbNV12RCUL3JzTp96vZxacIMs9VxGlpGDEZFVX4r8ltBMmQUkSK8S89Nu_33SVlltJUNGTSlyKpsxwBw7vducsq5rzYZbMmW1nbbCdPH45O7WdtiKE1ljMWyCuhyphenhyphenCxmSjjD2oG/s200/face.jpg" width="200" /></a><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I’ve learned that if I keep my activity to under two minutes, I can be okay. I’ve learned that </span><span style="font-family: "arial"; font-size: 11pt; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">some</span><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"> yoga poses can actually drop my heart rate instead of increase it. I’ve learned that my body is much more tolerant with poses that keep me in a inclined or reclined position rather than standing upright. Armed with this information combined with my heart rate monitor and my previous expertise on diet, exercise, and fitness, I now believe that I can come up with a regimen that will allow me to again regain my muscle tone and become as fit as possible in my new position. I will never be a runner again, and cardio exercise will </span><span style="font-family: "arial"; font-size: 11pt; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">always</span><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"> be dangerous for me. But I learned a long time ago that the purpose of cardio is just to keep the heart in shape, and that weight gain or loss happens much more readily in the kitchen than the gym. So as long as I watch my diet (also affected by this disease; more on that in a later post), then gentle stretching combined with incredibly short segments of mild and carefully-monitored static internal core exercises (such as kegels), body-weight exercises (such as shallow squat), and yoga poses (such as bridge) that minimize movement and maximize important bio-mechanical muscle activity all just may be able to help me regain control of my fitness.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Today is the first day of this new journey. This new goal I have set for myself. I am yet again about to do the impossible. My personal nickname and online alias has been “bootstrap” for as long as I can remember, because I have been picking myself up by the bootstraps every day since childhood. </span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Well, here I go again. I am picking my broken body up by the bootstraps and tromping in a new, much more gentle and forgiving direction. No more beating my body into submission. This path is all about listening to the body and treating it as fragile and precious. You don’t know how valuable something is until you lose it. I have lost so much with this one single illness… including 80% of my previous functioning, both mental and physical. I am treasuring that last 20% as if my life depends on it, because </span><span style="font-family: "arial"; font-size: 11pt; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">it does.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">_____________________________</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLaoAxG4h1zmFIZTHRAgkVXh0oU8WfcBIH7xLiVhcw77f3xwo_NWBK0ed_GToj1skq7QyNoHMkqGstDU95XwFGq5UfUaSbJ8utw7M8h7AXEqpvm4-DKumAwPEwgg28-sbD2H1s7Ss_Iqjl/s1600/Healing.webp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="756" data-original-width="530" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLaoAxG4h1zmFIZTHRAgkVXh0oU8WfcBIH7xLiVhcw77f3xwo_NWBK0ed_GToj1skq7QyNoHMkqGstDU95XwFGq5UfUaSbJ8utw7M8h7AXEqpvm4-DKumAwPEwgg28-sbD2H1s7Ss_Iqjl/s320/Healing.webp" width="224" /></a></div>
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</script></div>Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.com1tag:blogger.com,1999:blog-2879466065973431818.post-59760873892898064062018-11-08T00:10:00.001-08:002019-06-27T17:15:27.855-07:00Phases of ACCEPTANCE<div dir="ltr" style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4_LZ5mZVd2nJ3OEjW0-69oAd-5qWaTairqXlMS6iBJwbmblz_9rNxy7jybzlILvLd2fNXM28qS2HzupcdorQS8hOTa5yjhUrPmt-M0g5u6meOxOSrerZ3br8dhmCafOhrUKCL-okIbul1/s1600/FB_IMG_1531795315933.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4_LZ5mZVd2nJ3OEjW0-69oAd-5qWaTairqXlMS6iBJwbmblz_9rNxy7jybzlILvLd2fNXM28qS2HzupcdorQS8hOTa5yjhUrPmt-M0g5u6meOxOSrerZ3br8dhmCafOhrUKCL-okIbul1/s400/FB_IMG_1531795315933.jpg" width="400" /></a></div>
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<b>God grant me the SERENITY to accept the things I cannot change, </b><br />
<b>the COURAGE to change the things I can, </b><br />
<b>and the WISDOM to know the difference. </b><br />
<i>(-from the Serenity Prayer)</i></div>
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<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;">In the past three years, in addition to everything else, I have learned a ton about coming to acceptance, and more recently, learning about new research breakthroughs and discovering</span><span style="font-family: "times" , "times new roman" , serif;"> new and effective strategies every day, </span><span style="font-family: "times" , "times new roman" , serif;">all on how to understand and improve my situation. </span></span><span style="font-family: "times" , "times new roman" , serif;">Don't worry. There is still hope on the horizon. This is just a very long learning process. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">I ALWAYS wear dark glasses in public due<br />my sensory hypersensitivity caused by hyper-<br />vigilance of the central nervous system.<br />The fluorescent lights hurt my eyes and brain.</span></b></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;">My first lesson of this disease was</span><b style="font-family: Times, "Times New Roman", serif;"> PATIENCE</b><b style="font-family: Times, "Times New Roman", serif;">... </b><span style="font-family: "times" , "times new roman" , serif;">With how astronomically slow the medical system works and how slowly and slothly I have to live my life now. How long it takes to accomplish things that used to be so quick and easy. How slowly my brain works. How very VERY few things I can accomplish in a day. How <b>long </b>it takes to process all the intense emotions that come with an experience so earth-shattering and life-changing, leaving me bereft of any sense of control over my life or myself. That took about a year to wrap my brain around. </span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">I immediately turned to calling forth the "lessons of the sloth", which became my new power animal. I have stuffed sloths and sloth reminders hanging from my hammock chair, lamp, necklace, rear-view mirror, etc. Even a sloth neck pillow hoodie you can see in the pic below that I use to support my neck and block out the light and the eye contact; that comfy tool quickly became one of my favorite things. I had to really convince myself to accept that this slower pace of life was actually calming and good for me. The abandonment of a life full of stress, chaos, a million responsibilities, and a pace I could never keep up with, was now acceptable and appropriate for me... The rat race was gone, leaving me to focus on the smaller things like the beauty of a single flower or the feel of the sun on my skin. The sensation of a good morning stretch and the meditative tranquility of acts like coloring, reading, journaling, cuddling with my animals... </span><span style="font-family: "times" , "times new roman" , serif;">I started to see the serenity in it. </span><span style="font-family: "times" , "times new roman" , serif;"> </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b>I took a picture of myself on one of my worst days<br />only to find the word COURAGE written across my face.</b></span></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;">The next phase was really focused on coming to <b>ACCEPTANCE </b>with everything this illness has caused and changed and destroyed in my life: my career, freedom, body, mind, relationships, wardrobe, finances, hygiene, pride, car, activities, hobbies, phone, ability to leave the house, daily routines, trust in doctors, and even my own identity... The list goes on. There has not been a single aspect of my life that is not affected or damaged by my M.E. Including harassment and derision from strangers, friends, family, and even from doctors who are supposed to help. So much anger, frustration, loneliness, and depression built up. My mantra for <b>two years</b> was "LET GO" (of things you cannot control). I had the Serenity Prayer written on my bathroom mirror for months. That one took a while for me to come to terms with, but I finally did.</span></div>
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<span style="font-family: "times" , "times new roman" , serif;">I have just recently passed that phase and come to the new chapter of focusing on proper <b>PACING</b>, which is absolutely essential for people with <b>myalgic encephalomyelitis</b><b> </b>(ME)<b> </b>in order to prevent my own death and actively improve my functionality. After learning from the M.E. doctors and research experts that if I want to keep myself safe from falling into that downward out-of-control spiral that can lead to profoundly severe M.E., bed-bound state, bedpans, completely dark and silent room, almost zero contact even with loved ones, paralysis, tube feeding, and possibly death… I need to keep my level of exertion to 80% of what it takes to cause a crash.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtJ-SVx4h4cLBEF-PZ93QB_WHYh-ugSttIjtQ5FJDZJgg4YWjbSXMzt9PspnGmY6bAaK3r2wDyeEXk00puzq6ccpXQajTIB-kJNkN-3g3skPSzd5O1f9AtXx3FlI3ih7f_Gq-m9O-jK-Zs/s1600/20181024_131923.jpg" imageanchor="1" style="clear: right; font-family: "times new roman"; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="187" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtJ-SVx4h4cLBEF-PZ93QB_WHYh-ugSttIjtQ5FJDZJgg4YWjbSXMzt9PspnGmY6bAaK3r2wDyeEXk00puzq6ccpXQajTIB-kJNkN-3g3skPSzd5O1f9AtXx3FlI3ih7f_Gq-m9O-jK-Zs/s200/20181024_131923.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">The definition of POTS is when your heart rate<br />increases at least 30 bpm when standing.<br />This is me sitting on a stool doing dishes.</span></b></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">Using the heart rate monitor to keep myself below my broken aerobic zone, as the study-based research shows from the M.E. experts... I am learning SO much from this protocol about which things make me better and which things make me worse. The immediate, constant, and real-time feedback of the heart monitor, including the alarm that goes off when my heart-rate goes over 100, is invaluable.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4nWEPDkmm7hyphenhyphenkYeXOZLwPt3UzUv8sdxiB-VMIr4zZC9Sj-AE4ytcKjUtmGpyIRZJF-yEyYUbCKTflkcul7MfYABdsTLMJfrmpWohJfZPsr7vLB3vSvg1PI2nJ2TSOcqBUGP4Rz0M9rGhC/s1600/20181030_141934.jpg" imageanchor="1" style="clear: left; font-family: "times new roman"; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4nWEPDkmm7hyphenhyphenkYeXOZLwPt3UzUv8sdxiB-VMIr4zZC9Sj-AE4ytcKjUtmGpyIRZJF-yEyYUbCKTflkcul7MfYABdsTLMJfrmpWohJfZPsr7vLB3vSvg1PI2nJ2TSOcqBUGP4Rz0M9rGhC/s320/20181030_141934.jpg" width="155" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b>This is my resting heart rate while fully <br />reclined. This is where it SHOULD be.</b></span></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;"></span><br />
<span style="font-family: "times" , "times new roman" , serif;"></span><span style="font-family: "times" , "times new roman" , serif;">But even more important than giving me information on my condition and protocols to help, the heart monitor has given me a sense of <b>VALIDATION</b>. Before, all I had to go on were my body's signals, sensations, and feelings, which everyone can (and does) argue with, doctors and loved ones thinking I'm exaggerating, making things up, or lazy.... to the point where I start to believe them and doubt what I'm actually going through. This can be annihilating to our mental states and sense of self. But NOBODY can argue with a heart monitor. Even myself!! Watching the numbers go up and down with the severity of my symptoms gives me a sense of relief and validation that nothing else has since I was hit with this dreadful disease. My body's signals, my instinct and common sense, my feelings and thoughts were <b>right all along.</b> Screw what anyone else thinks - I have data on my side.</span></div>
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In addition to learning how to pace my physical stamina and fatigue, I have also learned about pacing <b>mental stamina and fatigue</b>, which is just as debilitating and can cause cascading physical and mental symptoms, including progression of the disease. This book, <a href="https://www.amazon.com/Brain-Injury-Survival-Kit-Cognitive/dp/1932603735/ref=sr_1_2?s=books&ie=UTF8&qid=1541746395&sr=1-2&keywords=brain+injury+survival+kit" target="_blank"><b>Brain Injury Survival Kit</b></a>, has been monumentally helpful in coming to terms with my new level of cognitive dysfunction and struggles with what we call "brain fog". The way words just elude me at times, or I can't remember the simplest of steps in a process (focusing on step two so hard makes me forget steps 1 & 3, much less remembering what I'm doing or why I'm doing it). Or sometimes my brain is just "off" and I cannot turn it back on no matter how hard I try. No amount of effort can "push through" mental dysfunction -- it's simply not possible.<br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b>Should be called, "ME Survival Kit"!</b></span></td></tr>
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It was by chance that I came across this book, and serendipitously, the book addressed my goals in the same order as I have, page by page, actually. Chapters about coming to terms, letting go of the old self in order to accept the new (hence my last blog post), followed by importance of pacing, strategies to prevent and manage mental exhaustion, and how to gain focused attention with a head full of mud (which will be my next goal). I post sticky notes full of quotes from this book on my white boards around my cocoon bed until I feel I've assimilated them into my new world view. (I swear I am not affiliated in any way with this book, publisher, author OR with Polar sports watches. 😅😜 I'm just finding these tools to be VERY helpful!)<br />
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<span style="font-family: "times" , "times new roman" , serif;"></span><span style="font-family: "times" , "times new roman" , serif;">But all of that information combined with my cascading crashes and flare-ups brought me a conclusion that has been a HUGE obstacle that I have been in denial about for a very long time... That if I want to see any semblance of balance or improvement, I need to restrict my level of activity SIGNIFICANTLY more than I already had, which was utterly devastating. </span><br />
<span style="font-family: "times" , "times new roman" , serif;"></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b>My psychiatrist helped me to create the </b></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b>chart at the bottom of this board to help </b></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b>navigate my PRIORITIES.</b></span></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;"></span>
<span style="font-family: "times" , "times new roman" , serif;">It puts me into the 25% most severe ME patients who are housebound. I am now almost bedridden in order to keep my heart from working too hard. </span><span style="font-family: "times" , "times new roman" , serif;">Since my heart monitor goes off every time I stand up due to the ME-induced central andrenergic postural orthostatic tachycardia syndrome (POTS), I need to stay in bed and reclined </span><b style="font-family: times, "times new roman", serif;">as much as possible</b><span style="font-family: "times" , "times new roman" , serif;">, only getting up for absolute essentials such as going to the bathroom or retrieving food from the kitchen. Conversations, which severely deplete mental stamina and lead to crashes, need to be limited to relevant information only and kept under two minutes in length, maybe ten at the most if it's really important. </span><br />
<span style="font-family: "times" , "times new roman" , serif;"></span><br />
<span style="font-family: "times" , "times new roman" , serif;"></span>
<span style="font-family: "times" , "times new roman" , serif;">This process has forced me to completely reassess and reorganize my <b>PRIORITIES </b>in a major way. I now only have energy for the top <b>very </b>most important things, leaving everything else by the wayside. I literally cannot do it all. I have to choose. If I want any shot at all of avoiding crashes and finding enough balance to accomplish those three most important and most urgent things well instead of poorly or not at all, I have to cut out everything else. Including the people I care about most</span><span style="font-family: "times" , "times new roman" , serif;">, shutting out the people I love and unable to help my closest friends in their time of need. </span><br />
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Essentially I have to reduce my world to just this one recovery room, cutting off almost all contact with the outside world.<span style="font-family: "times" , "times new roman" , serif;"> "</span><b style="font-family: times, "times new roman", serif;"><a href="https://www.facebook.com/TheWorldOfOneRoom/" target="_blank">The World of One Room</a></b><span style="font-family: "times" , "times new roman" , serif;">", as Jessica Bearman (Author of </span><b style="font-family: times, "times new roman", serif;"><a href="http://www.jaytay.co.uk/" target="_blank">A Girl Behind Dark Glasses</a></b><span style="font-family: "times" , "times new roman" , serif;">) calls it. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">I sometimes have to lock my door and turn off<br /> my phone for hours or days at a time just to<br />reduce incoming stimuli and find some peace.</span></b></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;">[SIDE NOTE: Jessica's book helped me immensely in coming to acceptance. Reading experiences that so closely resembled my own, seeing/feeling/hearing the details of how bad things can really get if I don't listen, and Jessica's positive attitude, personality, and spirit shining through it all, it astounded and changed me. If she can find such victory and gratitude in finally being able to move her arm enough to touch her own face and brush her own teeth, if she can create beautiful and meaningful works of art while completely paralyzed, I can certainly have a good attitude and allow myself to celebrate the tiniest of victories... though they are actually the big ones.] </span><br />
<span style="font-family: "times" , "times new roman" , serif;">(Again, no affiliation here other than being a fan. 😉)</span></div>
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<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;">This new level of restriction and boundaries takes my isolation and limitations to a whole new level, and it took me a week or two and a few sob sessions to come to terms with that as well. </span><span style="font-family: "times" , "times new roman" , serif;">But when I finally did, it actually allowed me a new level of freedom to create and hold my new boundaries... It gave me permission to listen to my body without guilt. It gave me license to actually consider using a reclining automatic wheelchair that could extend my functionality significantly and give me back some of my independence, and with good reason. </span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;"></span></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">I often have to wear a neck brace due to the<br />permanent damage to my neck and spine.</span></b></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;">As I focus on this latest goal, I am learning in leaps and bounds. For the first time since my former life was destroyed, I feel like I am actually making progress in gaining control of my ability to find stability and</span><b style="font-family: times, "times new roman", serif;"> </b><span style="font-family: "times" , "times new roman" , serif;">prevent crashes.</span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;"></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;"></span></span></div>
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<span style="font-family: "times" , "times new roman" , serif;">Each lesson has been very difficult but also very worth it, gaining invaluable wisdom along the way. I believe that everything happens for a reason, and that the Universe doesn't give me things I can't handle, however torturous they may be in the moment, or seemingly endless moments. This is just part of my journey.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"></span></div>
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<span style="font-family: "times" , "times new roman" , serif;"><b>But accurate awareness has so much to do with access to proper care, prevention of stigma and harassment, and the mental stability of patients with this disease because we are so often brushed off as lazy or attention seekers. </b></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ4Rthe5dAan1C77oRlV4CvBkdmlCIkIw8xO0WCnrSvXCXGmF6R5AGoB2cQsoCZczfZ8CDz7G4sZJASLohwpp-ITONop2w4wSY9NMZwP-p6rBp9gR5IcU2laSe3BQBcKhMwXKwxC2a06fu/s1600/LovelessAIDSQuote.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ4Rthe5dAan1C77oRlV4CvBkdmlCIkIw8xO0WCnrSvXCXGmF6R5AGoB2cQsoCZczfZ8CDz7G4sZJASLohwpp-ITONop2w4wSY9NMZwP-p6rBp9gR5IcU2laSe3BQBcKhMwXKwxC2a06fu/s200/LovelessAIDSQuote.jpg" width="200" /></a><span style="font-family: "times" , "times new roman" , serif;">Experts are just now finding proof through current research on how to definitively identify this disease through astounding biomarkers and how incredibly devastating, destructive, and dibilitating it is to the patient's body, mind, and health. This means huge leaps and bounds for us in actually getting validation, proper testing, proper treatment, and real help for people with M.E.</span><br />
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<b>So the biggest thing people can do to help if they cannot do anything else is to share some of my posts here or on my <a href="http://www.fb.com/Sharon.Hopfer" target="_blank">Facebook profile</a> that they might find particularly poignant or informative. Even if you have heard the message before, others need to know that "chronic fatigue syndrome" is actually <i>myalgic encephalomyelitis </i>(or some other missed diagnosis) and is a VERY dangerous disease, not just a "yuppy flu" for the lazy who do not take care of their health. </b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwl0JAPXAq1ZdKZcaelKOpN39n7WI7yrPG5xLhDs2oQ3ZHYN3YkfkqaLH2lZWxQUfBj2YNQvKNOy2tgDnwGx6OVco8676JU5v8TKz-wNp0jIv21RowMjj6UVi1ej4wJGc-zTVmSquSzR4k/s1600/KlimasSeverityQuote.jpg" imageanchor="1" style="clear: left; float: left; font-family: "times new roman"; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwl0JAPXAq1ZdKZcaelKOpN39n7WI7yrPG5xLhDs2oQ3ZHYN3YkfkqaLH2lZWxQUfBj2YNQvKNOy2tgDnwGx6OVco8676JU5v8TKz-wNp0jIv21RowMjj6UVi1ej4wJGc-zTVmSquSzR4k/s200/KlimasSeverityQuote.jpg" width="200" /></a>So many people have that stigma about this disease, even doctors. Most people actually know absolutely nothing about it... Much less that it's one of the most devastating diseases in the world. According to experts, worse than end-stage cancer, worse than end-stage AIDS, worse than congenital heart disease, worse than MS, and twice as prevalent.... and it goes on for decade after decade if it doesn't kill you first.</div>
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">I almost always wear a breathing mask during any visits </span></b><br />
<b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">to hospitals or medical centers due to my compromised </span></b><br />
<b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">immune system. </span></b><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">The ear defenders are ESSENTIAL for </span></b><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">public </span></b><br />
<b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">due to my CNS hypersensitivity. </span></b><span style="font-size: xx-small;"><b style="font-family: arial, helvetica, sans-serif;">Noise hurts </b><b style="font-family: arial, helvetica, sans-serif;">my ears and brain.</b></span></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;">I was one of the most health-minded people out there for many years WHILE CHRONICALLY ILL (as documented in this very blog) before I got taken down by M.E. And now doctors just tell me derisively to go home and take better care of my health, all of them shoving me out of their offices in tears.</span><br />
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<span style="font-family: "times" , "times new roman" , serif;">However, I am actually starting to have a lot of hope and validation with FINALLY getting a referral to Stanford after THREE YEARS of begging. People there actually believe me because they know what M.E. and dysautonomia look like. People there are finally starting to give me the proper tests. People there treat me like a valid human being.</span><br />
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<span style="font-family: "times" , "times new roman" , serif;">So yes, it has been a very tough road that I have had to walk, but I am not hopeless. I actually have quite a bit of light on the horizon compared to a couple years ago. I am still fighting like always, but now I'm fighting to stay alive every day, moment by moment... And I just might win.</span><br />
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<span style="font-family: "times" , "times new roman" , serif;"><b><i>P.S. - I just noticed the shirt I'm wearing in that last pic was created by Jamison Hill, a friend and fellow M.E. warrior who writes a similar blog at <a href="http://jamisonwrites.com/">JamisonWrites.com</a>. (He has actually been published in Men's Health!) If you'd like to spread awareness by rocking an M.E. shirt, proceeds of which help fund Jamison's medical care, then <a href="https://www.teezily.com/who5lup#/product=58&color=black&side=front" target="_blank">click here</a>!</i></b></span></div>
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</script></div>Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.com3tag:blogger.com,1999:blog-2879466065973431818.post-80634911946724273712018-08-25T04:04:00.001-07:002019-06-27T17:10:57.080-07:00Tribute<div dir="ltr" id="docs-internal-guid-5e9d86c8-70a2-dd39-7b6e-47729de0cd62" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">When I think of all of the things I have done in my life… when I really stop to think about specific memories of all the different types of experiences I’ve had over the many years -- ASIDE from all of the health horror stories and relationships gone bad -- all I can think is THANK GOD. Thank God that something in my soul had the wildness of spirit and lust for adventure that made me determined to live life to the fullest in every way that I could from such a young age. My motto was that I wanted to experience everything life had to offer. And so I did… every opportunity I got.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have climbed the muddy hills of The Badlands at sunset, racing the night and the storm.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I breathed underwater while swimming the depths of the Gulf, glimpsing the ever-elusive and gigantic Pacific manta ray gliding overhead, and then almost got swept away by the surge.</span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 14.6667px;">I have skied the slopes of Switzerland and watched the sun rise over the Alps, slowly disappearing the morning star each day as our train wound its way down the mountains to our little Swiss school where we would eat our lunch of fresh French bread, cheese, and fruit while we watched the swans glide across the glistening lake.</span></span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have followed the path of a guru, studying the words of the ancients and learning the poses that bring peace.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have mesmerized an entire classroom full of hurt and broken and angry at-risk high school students all at once with laughter, with tears, with inspiration, with determination.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have seen the exquisite and majestic beauty that can come from just a single spot on a single bloom… have been caught off-guard by a divine fragrance on countless occasions, always stopping to wonder which flower or bush it came from before closing my eyes and breathing deeply while I chuckle and appreciate the way nature can just reach out and grab my attention out of nowhere.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have known great love. And I have known great loss. And known great love again. And I can remember the many moments in the very beginning that made me so quietly certain, so very certain, that this was the person I was going to spend the rest of my life with.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have climbed countless mountains, hiked countless trails, camped in the wilderness with nothing but a gallon of water, with a loaf of bread, with a can of chili, a flint, a blanket, and two best buds, huddling together in the night for warmth.</span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have scored points as a roller derby jammer, leaving a trail of fallen players behind me.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have felt the unbridled power that can be called forth by chanting and holding beads with a hundred other believers. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Have felt the magic of harmonizing so purely and sweetly into microphones or cathedrals with thirteen other solo singers.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I’ve sat in the shady dens of the drug users, succumbing to the seductive sensations in my body and pretending that the outside world does not exist.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have breathed in the fresh morning air of the Joshua Tree deserts, felt the scorching sun on my skin later that day, seen the oasis from far away.</span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I've tamed a wild colt with my stillness, moment by moment, breath by breath, over the course of one amazing summer.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have trained for triathlons and half-marathons (even if I never made it to the big races). I’ve lifted dead-weights and seen just how far and how fast my body will take me.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have walked into a bar full of men on more that one occasion and “owned” it, knowing that each of them is tracking my every move. I know what it’s like to scan the room and simply </span><span style="font-family: "arial"; font-size: 11pt; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">decide</span><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"> who I’m going to go home with. I’ve felt the hot gaze of the man walking behind me, unable to take his eyes off my ass as I strut down the hall.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">And I’ve had some amazing sex… on many many occasions. And I mean REALLY. Amazing. Sex.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I’ve surfed the waves that crash on the coasts of Mexico, I've swam the moonlit shores of Hawaii, and I’ve slalomed the wakes on the lakes of Oregon.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">As a young child, I have cooed a baby lamb to sleep in my lap, and as an old farmer, I have watched a newborn lamb take its first steps, all damp in blood and afterbirth.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I’ve floated boats through, ridden mules through, zipped lines through, and driven cars on “heinous” tiny roads through the mighty jungles of the Yucatan. Watched the monkeys swing from tree to tree oh-so-early in the morning (stretch!), stood amid the pyramids and pieces of ancient civilizations long gone.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I’ve climbed every step of the Eiffel Tower. And the Space Needle. And La Sagrada Familia. And Tibidabo. And Chichen-Itza.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I’ve gambled in Vegas and won. Have also gambled and lost.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have rocked unsettled infants to sleep, feeling the soft tops of the precious heads resting so gently against my cheek. Have chased tag and hidden rocks with those same infants after they've grown a few years, stealing pieces of my heart as they go.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">…and today all I can think is thank God. Thank God something in me decided to really LIVE instead of letting life pass me by. Or maybe I should thank myself instead. As I lie here in my prison bed, unable to move, taking inventory of all the individual aches and pains throughout my body, I frequently reassure myself that if I were to die today, I WILL have lived a full life. </span><span style="font-family: "arial"; font-size: 11pt; white-space: pre-wrap;">And I am satisfied.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">As the stabbing in my hip breaks my attention... I am thankful for all of the memories that have taken me away from it for this long.</span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 14.6667px;">Then I suddenly realize… that even if my body and mind are broken… that my spirit has not changed. That I still have that fire inside of me, wanting to greedily eat up everything life has to offer. And I wait for the days that it can spark it’s flame.</span></span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">What will YOU do with all of your tomorrows…. before they run out?</span><br />
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I realize that I came up with my original informational cards when I was in a triggered state of emotional reactivity towards recent bouts of hounding, harassment, and discrimination that I had been victim of..... The angry, judgemental, dangerous words of my haranguers would not stop rattling around in my head until I wrote down a rebuke. My inability to provide cognitive reasoning at the time caused me to feel powerless and angry. I regained my power by writing in succinct business-card format what I would have liked to say to those people who harassed me so that next time it happened, I could "say my piece" by handing them an info-card and NOT feel even more powerless than I already do on a daily basis.</div>
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As I revise these cards, these tools of survival, I am trying to let go of the anger and instead focus on spreading awareness of invisible illness and service dogs in a way that is easier for people to hear. Knowing that these nicely-worded cards are being created for people who are going to mistreat me in a way that causes more emotional and physical trauma to me than they will ever understand... It is a difficult thing to do. I need help in dealing with my resentment over being disrespected or negatively reacted to simply because my daily struggles and coping tools are so severely misunderstood. It is a bitter bone that I have been chewing on for quite some time, and its good n’ stuck in my craw in a way that's hard to get out. </div>
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These are things I’ve known before in a logical way but I'm just now attempting to come to emotional acceptance with. I'm just noticing how much more incredibly difficult my day-to-day life is simply based on the way people occasionally respond emotionally or defensively to those informational cards. I am realizing that if I want strangers/public to respond in a manner that will allow my life to be easier, then I need to word myself in a way that cow-tows and bows to other people's discomforts with my disability... Even when they are breaking the law and putting my life at risk by rudely distracting my service dog. Even when they are actively harassing me for being disabled. </div>
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This is very difficult as it requires me to let go of a certain amount of pride as well as personal boundaries that I’ve had to establish in the past regarding how I will and will not allow myself to be treated, boundaries created as I was crawling out of emotionally abusive relationships… boundaries that I had to work damn hard to build from scratch back when I was recovering from codependency and sense of worthlessness and self hatred stemming from childhood and teenage-hood and early twenties. Boundaries that are very difficult to give up.</div>
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It's not about who's right or who's winning the fight... Sometimes you have to give up your pride and your need to be accurate or validated or on the right side of the law or medicine, because no matter what you do, you cannot control the external factors, which means that in order to survive and not only make your life easier but also reduce risk of your actions backfiring, it is imperative that you learn to let go of being right and instead “catch more flies with honey”… allow yourself to be humble… even if they don't deserve it… <b>YOU DO</b>. You deserve the peace and sanity that will come by sugar-coating the words in a way that will allow them to hear the message more clearly, which will result in a much stronger wave of awareness and compassion toward your situation (and so many others) versus someone who gets pissed off at your card or triggering verbage.</div>
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I need to look at it not as giving up my boundaries but as responding and teaching in a more Zen-like fashion... I do not need an "eye for an eye"; that only creates more trauma and blindness, which I can't afford. Instead, picture thyself channeling the detatched "turn-the-other-cheek" high-road of Gandhi, Mother Teresa, Jesus, Buddha... Book 2 of my life is all about applying the wisdom I have gained in Book 1 of my life. Time to step up your game, Ronni Capper!!</div>
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<span id="docs-internal-guid-03f1068c-0ee9-bdaf-f576-86f2b7e6daa3"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">After earning my Master of Arts in Educational Leadership at 24, I was a </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">full-time English teacher for 13 years</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> as well as a part-time athlete: a runner, a weightlifter, a yoga instructor. I traveled, played roller derby,</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">and</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> trained for triathlons through multiple illnesses, chronic diseases, immunosuppressants, major surgeries, and a variety of severe infections all for MANY YEARS</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. (Read detailed accounts at my blog: </span><a href="http://ronnilee-fightingforit.blogspot.com/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">RonniLee-FightingForIt.blogspot.com</span></a><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">)</span></span></div>
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<span id="docs-internal-guid-03f1068c-0ee9-bdaf-f576-86f2b7e6daa3"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Around the time of onset, I had moved houses multiple times, started a new job, moved classrooms, and purchased a “fixer-upper” farm with my life partner. On October 6, 2015 I came down with what I thought was a very bad flu, compounded by both an HSV2 outbreak and a yeast infection. (Symptoms: sore throat, white spots on tonsils, mild fever, productive cough, nasal & chest congestion, debilitating fatigue, body aches, plugged ears, loss of voice, etc.) During the months that I struggled with this “flu”, I was also going through intensive yoga teacher training to become a yoga instructor in addition to teaching high-school English full time. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">This</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">severe viral infection lasted WELL OVER TEN WEEKS before symptoms began to resolve</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. </span></span></div>
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<span id="docs-internal-guid-03f1068c-0ee9-bdaf-f576-86f2b7e6daa3"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Then on April 18, 2016, after a week of feeling fluish again (Dr. apt) and a week of feeling anemic (iron/ferritin labs), I experienced a </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">sudden onslaught of progressive, debilitating symptoms stemming from seemingly EVERY BODILY SYSTEM AT ONCE </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">(see list below), causing me to leave work in the middle of the day for a desperate visit to urgent care that revealed only inconclusive results.</span></span></div>
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<span id="docs-internal-guid-03f1068c-0ee9-bdaf-f576-86f2b7e6daa3"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I was never able to return to work or any of the above activities again. From that day forward I have hardly had the strength to get out of bed most of the time, and </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">ever since I have struggled enormously to complete even the most basic level of personal hygiene tasks or the smallest of household chores</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">, always taking frequent breaks from being winded, nauseated, weak, dizzy. Over-exertion or uncomfortable temperatures can leave me bedridden for days or weeks at a time, but even scarier is the </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">steep decline in my cognitive function.</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> I’ve seen </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">no significant improvement of symptoms in over two years and have no reason to expect any in the foreseeable future</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. (Both my previous PCP and my psychiatrist agree in writing on that point at least.)</span></span></div>
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<span id="docs-internal-guid-03f1068c-0ee9-bdaf-f576-86f2b7e6daa3"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">After a variety of basic blood tests, a referral to endocrinology to check cortisol function, and a referral to rheumatology to rule out autoimmune diseases, all to no avail, my primary care physician hesitantly settled on fibromyalgia as a “working diagnosis” under direction of the rheumy based on NOTHING more than my verbal description of my autonomic nervous system dysfunction, and then </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">he gave up on any further testing or efforts to find a more accurate diagnosis for me </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">despite my repeated requests for further referrals and testing. He has since shuffled me into med-management, just reiterating at each appointment how imperative it is that I try my best to exercise every day.</span></span></div>
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<span id="docs-internal-guid-03f1068c-0ee9-bdaf-f576-86f2b7e6daa3"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Although I have many overlapping symptoms with fibromyalgia, I agreed that the fibro diagnosis didn’t quite fit me. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">The fact that my symptoms involve the cardiovascular and nervous systems means that to me they were and are scary</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">, so for over a year I searched for answers by myself. I recorded symptoms, analyzed mind-body reactions, researched endlessly online, aggressively looked for patterns, reasons, strategies, diagnoses... and I finally found my answer, the missing puzzle piece. However, by then everyone assumed it was psychosomatic. The more I tried to insist on further testing, the less my doctors believed me. So eventually I gave up, even though </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">the closer I came to the truth, the more afraid I became about my own prognosis</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">.</span></span></div>
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<span id="docs-internal-guid-03f1068c-0ee9-bdaf-f576-86f2b7e6daa3"><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I have recently lost half my disability income for the rest of my life because of having a “questionable” diagnosis with no real evidence yet. I had until May 2018 to appeal this decision, so I found myself with good reason to renew my efforts to document evidence of my illness. With the recent appeal I submitted, American Fidelity has given me until the end of September 2018 to submit evidence of my illness.</span></span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;"><u>MY SYMPTOMS</u></span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Daily and in Waves </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">(severity varies daily & hourly)</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">:</span><br />
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<li><span style="font-family: "times new roman"; font-size: 11pt; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Severe</span><span style="font-family: "times new roman"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"> fatigue and lethargy</span></li>
<li>Weakness / shakiness</li>
<li>Arrhythmia</li>
<li>Dizziness / lightheadedness</li>
<li>Orthopedic intolerance (markedly significant decrease in symptoms when prone or reclined)</li>
<li>Post-exertional neuroimmune exhaustion</li>
<li>Increased bruising</li>
<li>Enlarged liver</li>
<li>Severe cognitive impairment / fogginess</li>
<ul>
<li>Inability to focus</li>
<li>Inability to multitask</li>
<li><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Severe</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> memory impairment, both short-term and long-term</span></li>
<li>Slow or inadequate information processing (visual stimuli, conversations, reading, TV, etc)</li>
<li>Aphasia: difficulty in finding words, forming sentences, remembering details, simple math, worsening dyslexia</li>
</ul>
<li>Digestive Shut-down</li>
<ul>
<li>Anorexia: total loss of appetite</li>
<li>Frequent nausea</li>
<li>Increase in GERD symptoms (med breakthrough)</li>
<li>Upper abdominal pain with digestion</li>
<li>Occasional “Stitches” = the same exercise-related transient abdominal pain (ETAP) that I used to get when long-distance running, only now they happen from simply digesting a meal, even if I am sitting or reclined.</li>
</ul>
<li>Inability to maintain homeostasis</li>
<ul>
<li>Extreme temperature instability / intolerance (i.e. environmental, exertional, digestive, etc)</li>
<li>Night sweats / cold sweats / hot flashes</li>
<li>Cold extremities</li>
</ul>
<li>Pain & Neuropathy</li>
<ul>
<li>Body / muscle aches, pains, tension, trigger points</li>
<li>Worsening neck stiffness, pain, subluxation, exposed nerves between vertebrae (C6 & C7)</li>
<li>Frequent intermittent numbness/tingling in hands</li>
</ul>
<li>Repeated various infections (viral, bacterial, fungal)</li>
<li>Overactive senses / processing disorders</li>
<ul>
<li>Sensitivity to light </li>
<li>Sensitivity to clothing / pressure / textures</li>
<li>Sensitivity to noises or chaos</li>
<li><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Very</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> easily overstimulated</span></li>
<li><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Very</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> easily overwhelmed</span></li>
</ul>
<li>Restless sleep</li>
<ul>
<li>Insomnia</li>
<li>Inability to reach deep sleep</li>
<li>NEVER wake up feeling refreshed</li>
<li>Mornings are most difficult -- takes a couple hours of meds & massage before I can even get out of bed.</li>
</ul>
<li>Total loss of libido</li>
<li>Mild long-term vision impairment</li>
</ul>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><br /></span>
<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">During or After Activity or Stress </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">(sensitivity varies widely day-to-day)</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">:</span></div>
<div style="text-align: left;">
<ul>
<li>Tachycardia</li>
<li>Shortness of breath</li>
<li>Weakness / exhaustion</li>
<li>Excessively hot / sweaty</li>
<li>Delayed onset (up to 24+ hours)</li>
<li>Total loss of cognition</li>
<li>Total loss of speech / words</li>
<li>Sense of urgency (adrenaline)</li>
<li>Hyperventilation</li>
<li>Vomiting / dry heaves</li>
<li>Physical collapse</li>
<li>Syncope</li>
<li>Post-exertional malaise</li>
<li>Delayed recovery (can take weeks on end)</li>
</ul>
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<b>Symptoms Worsen With:</b></div>
<div style="text-align: left;">
<ul>
<li>Any type and any level of physical or mental exertion or stress</li>
<li>Upright posture (standing still < walking < seated < reclined < lying prone)</li>
<li>Standing longer than a minute (worse than walking)</li>
<li>Temperature instability (heat worse than cold)</li>
<li>Hydrocodone/paracetamol narcotic (Rx for pain)</li>
<li>Albuterol sulfate inhaler (Rx for asthma)</li>
<li>Unprocessed meats, veggies, nuts, high-fiber diet (Difficult to digest = short term digestion & energy problems, though nutritionally superior for long term treatment. Solution: baby food, soups, processed meat.)</li>
</ul>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Symptoms Improve With:</span><br />
<ul>
<li>Reduction of external stimuli (all types)</li>
<li>Horizontal posture (lying prone > reclined > seated > walking > standing still)</li>
<li>Temperature stability (external assistance with homeostasis = air conditioning, fan, cool towel, blankets, heating pad, space heater, etc)</li>
<li>Breo Ellipta corticosteroid inhalation powder (Rx for asthma)</li>
<li>Valacyclovir antiviral (Rx for HSV2)</li>
<li>Duloxetine nerve pain antidepressant (Rx for bipolar)</li>
<li>Meloxicam anti-inflammatory (Rx for neck damage pain)</li>
<li>Tramadol narcotic (Rx for pain)</li>
<li>Carbohydrates = fast/easy energy supply for short-term effects. (Long-term high-sugar diet increases inflammation, SIBO, candida, pouchitis.)</li>
<li>Antimicrobial/antioxidant home remedy that I drink all day every day = fresh lemon, green tea, aloe vera, Stur (stevia + fruit/veggie extracts for flavoring).</li>
</ul>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Symptom Progression/Cycle:</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Below is a description of </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">dysautonomia </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">written by a doctor specializing in chronic pain and fibromyalgia. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">It is EXACTLY what happens with my pattern of symptoms</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">and has been emailed to my doctor with no response</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. By now the panic part of the below equation has subsided since I now know where the symptoms are coming from, but the following description of the progression of physiological responses and symptoms is the </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">most accurate description I have found for</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">what I experience multiple times per day...</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 10pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">When [patients] are under stress, the stress hormones are not released during the stressful period. They just keep working, utilizing normal energy and feeling exhausted from the whole ordeal. Eventually the ordeal is over, they get to go home to rest (super-duration). Any additional physical activity or any mental activity causes the threshold level to be reached and the stress hormones begin to be dumped into the body (hyper-excitability). The patient experiences a rapid heart rate, a sense of urgency, and shortness of breath. Adrenaline begins to circulate in the body and the patient feels hot, cold or sweaty. Because the person is not doing anything stressful at that particular moment and can see no significant precipitating factor to elicit this type of response, the patient may become more fearful. The patient begins to hyperventilate and the heart rate goes up faster, inducing extra adrenaline to be secreted and the other stress hormones to be released rapidly (super-susceptibility). Eventually the patient reaches a point of extreme panic (super-reactivity) and are often brought to the Emergency Room for work up and to be treated with various medications and sent home with usually negative findings. </span><span style="font-size: 10pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-size: 10pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-size: 10pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 10pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Within a short time the same process will be repeated. These cycles will continue until all the stress hormones are exhausted from the adrenal glands and from the central nervous system. Then the cycles will stop so that the body can regenerate all of the stress hormones. If these patients will later again experience another stressful condition until the delayed threshold is reached, the panic attack cycle will repeat itself. Therefore </span><span style="color: #980000; font-size: 10pt; font-style: italic; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">dysautonomia of the hormonal stress response elicits what many times people consider to be panic attacks of unknown etiology</span><span style="color: #980000; font-size: 10pt; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">.</span><span style="font-size: 10pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">”</span><span style="font-size: 10pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span></div>
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<a href="http://www.prohealth.com/library/showarticle.cfm?libid=7850" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">http://www.prohealth.com/library/showarticle.cfm?libid=7850</span></a></div>
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</script></div>Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.com0tag:blogger.com,1999:blog-2879466065973431818.post-79398564590455664272018-07-25T22:42:00.001-07:002019-06-27T17:11:38.284-07:00Welcome to Stanford<div dir="ltr">
He started by reviewing my files and health history, and then the exam included basic physical, BP & HR both reclining and standing, rhomberg test, tandem test, cold sensitivity, poking areas of my body with a pointed stick, tuning fork vibration test, tunnel vision test, touching nose with eyes closed, hand-eye coordination, hypermobility tests (thumbs, knees, elbows), reflexes, looked at scarring, stretch marks, skin elasticity, finger-to-wrist ratio.... Then after some further discussion and questioning, the autonomic specialist at Stanford explained that he suspects a combination of overlapping symptoms from myalgic encephalomyelitis, postural orthostatic tachycardia, and ehlers-danlos spectrum that all lead to the central nervous system hypervigilance which causes my hyper-sensitivities (light, noise, touch, movement, etc). The actual testing that will validate a diagnosis of these conditions will come via referral to ME clinic, dysautonomia testing, and gastrointestinal motility specialist. I am very satisfied, as these are all things I suspected myself, so today's appointment was quite validating. Exactly what we were hoping for. </div>
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I got this packet in the mail a month ago but have waited to open until now because I was not quite ready to believe it... Didn't want my expectations to get too high too quickly after all this time. But reading a conversation in an online support group about someone else waiting to get in to Stanford, one of the one of the only health centers to have a disautonomia and myalgic encephalomyelitis clinic (which makes it one of the top and highest-sought medical centers in the world for people with my disease) made me not only feel a little bit guilty but also wonder what doctor I was seeing in what clinic and specialty. So I had to open it..... </div>
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Picturing that this might actually happen for me is bringing me to tears. I have been waiting over two years for an accurate diagnosis as I have been getting worse, told by doctors to go home and take better care of my health (even though I used to be an athlete who ate only the most organic highly nutritious foods), told by my previous PCP to exercise as much as possible when I could barely stand… all of them refusing the tests and referrals I was begging for, shoving me out the door in tears with those blank stares that refuse to make eye contact. One specialist I heard from online wrote that often patients who self-diagnose this disease are more accurate than the doctors are as long as they do their research, which I certainly have ten times over!</div>
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I have a one-hour consultation with a neurlogist at Standford who specializes in autonomic disorders, at which point he will decide which tests to run. Spinal tap should be at the top of the list according to my PCP due to my recent off-the-charts Epstein Barr Virus antibody results. Also likely to be on the agenda: MRI and SPECT brain scans, tilt table test, exercise stress test, sweat test, cognitive functioning, and other fancy disautonomia measures. </div>
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Whatever hell I may endure to go through this testing will be well worth it since I have been waiting years for someone to take me seriously and look at what is wrong with me. So far they sound pretty welcoming... Just please pray for me that this doctor is able to convince my insurance to cover this testing since we are paying out-of-pocket for the consult (over $800).</div>
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(NOTE: The work on my calendar in the screenshot of my phone desktop refers to my hubby's work schedule, not mine! As if. 😖)</div>
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As I come to terms with my own changing limitations, I am learning to make my shrinking world more functional. I have to be able to run my life from bed if need be. After being inspired by a bedbound fellow M.E. warrior in the UK, I put my retired teacher skills to work.<br />
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Pacing is crucial to patients with ME. If we over do it one day, we could potentially cause a hard crash, severe symptom flare, and/or permanent decline and progression of our disease. Therefore, learning how to function without over-exerting ourselves it is critical.<br />
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I discovered that one of the areas in which I struggle the most when I crash is communication. So I have to figure out ways to communicate other than speaking. And because we can lose function in big chunks all at once and with no warning, I have to be prepared for what happens when I get even worse. <br />
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Take a look at the photos below to see all of the new pacing and communication systems that I have recently put into place.<br />
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I have been fortunate enough to find and be able to afford some tools to help me function from <a href="http://stickmancommunications.co.uk/epages/747384.mobile/en_GB/?ObjectPath=/Shops/747384">Stickman Communications </a>as well as Amazon Shopping, but many of these can also be recreated at home from recycled materials. See how creative you can get...<br />
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</script></div>Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.com0tag:blogger.com,1999:blog-2879466065973431818.post-4675214093566188072018-06-01T16:57:00.001-07:002019-06-27T17:19:12.131-07:00Black Dress Day<div dir="ltr">
<b>BLACK DRESS DAY 🖤 A SIGN OF HOPE</b></div>
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[See photos for explanation of Black Dress Day]<br />
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A day late on posting this due to doctor appointments and a crash... But here is the sexy slinky black cocktail dress I bought years ago and dreamed of wearing on a night out with my future husband. Right before I went down with M.E., as an athlete I was in the process of getting into killer shape so that I could show off my best assets in this simple dress. To this day it remains in my closet unused. More like a funeral dress for my former self as well as all those who lost their lives to M.E.<br />
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At the end of M.E. awareness month, I have run out of steam and will be slowing down on my activism. However, I must note how VICTORIOUS I have been during this month of fighting for my right to exist. I was able to participate in a demonstration in which I felt heard and seen. I was able to gain new friends and support networks both in person and online. I was able to enlighten many people to the true nature, severity, and gravity of M.E. I was able to convince my doctor that there is something seriously wrong with my body. I was able to schedule appointments for intensive diagnostic testing at some of the top medical centers in the country. I was able to adjust medications to increase my level of comfort. I was able to gain tools that will help me set boundaries and communicate my needs as an M.E. survivor in ways that will improve my quality of life. <br />
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So however much all of that may have cost me in the progression of my health, it was all worth it. Therefore, this month's black dress is a sign of hope. Maybe this was the month that set me on the path back to being able to wear it some day.</div>
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My link to the world of M.E. activism happened at the time in my life that I needed it the most. After two years of being shoved out of doctors offices in tears, dismissed and abused by medical professionals who were supposed to diagnose and treat me, having to beg for and be repeatedly denied medical testing and referrals, of being harassed in public because my disability is not visible, of losing my freedoms and abilities both in small pieces and in big chunks, of feeling like pieces of me have been stripped away until there was nothing left... I was in a crisis mode, feeling as if my entire self was disappearing completely. It was the week that triggered a dangerous hypomanic episode of my bipolar disorder, something that I cannot afford to ever let happen again, because the overexertion of it has since progressed my disease to a whole new level of severity.</div>
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The Myalgic Encephalomyelitis Awareness Week during which I was able to attend this rally completely changed my outlook. I was able to gain a voice, a network of fighters, a bit of validation, a bit of empowerment. As soon as I walked up and put my empty shoes on the steps with all of the others of those who are missing from life... The tears started streaming down my face, which continued on and off throughout the event as I was hit by powerful waves of emotion.</div>
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You will notice in the pictures I had to use tools to mitigate my symptoms, sensitivities, and processing disorders due to this disease. The easiest way to do that is to limit incoming stimuli. The neck pillow helps support my neck pain. The hoodie on it along with the sunglasses blocks out light, peripheral vision, painful eye contact. The noise cancelling headphones block out distracting background noises and make close/loud noises less jarring. My service dog in training was to help keep me upright and treat my symptoms as well as provide both physical and emotional support.</div>
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<b>My F</b><b>acebook post that day:</b> <br />
"POWERFULLY CATHARTIC & EMOTIONAL: Crashing super hard right now but totally worth it. Grateful to all those who had the strength to come out, to all of the public speakers, to everyone who is here supporting someone who couldn't, and for the opportunity to feel like maybe my voice was heard, even if just for a moment. Glad I made it out there and glad I made it home safe."</div>
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#MillionsMissing #MEAwarenessDay #MEAction #CanYouSeeMENow #DoctorsCantDianoseMe #WeJustDisappear</div>
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<b>Myalgic encephalomyelitis demonstration rally on the steps of City Hall in San Francisco, May 12, 2018 -- International ME Awareness Day... </b>I was crying in many of these photos.</div>
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<b>THE REAL DANGERS OF "PUSHING THROUGH":</b><br />
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I overdid it majorly the last few days... I tried to accomplish some adulting on days I knew I had already crashed and was needing recovery from active <b>post-exertional neuroimmune exhaustion</b> (PENE), active infections, premature menstruation.... but today's priority was important, so instead of listening to my screaming body, I medicated and caffinated through the pain and exhaustion to accomplish these important adult tasks..... But by the time I crashed on top of a crash halfway through today (didn't have my pain meds with me), my disease had actually progressed to a new level of severity. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQsZgatnMD_eKs3HQc3mIi7TCYCQgJttileGpOun6baxk06avqHn6EQXoLg0o-z9tDjvJNy13EJnbcDIhLZYySfbvEuARAKBCd2BwACXaMhgguXSFiPCvZzooIJ-jOtTETFPPEJxfpuNlG/s1600/20180531_145045.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1280" data-original-width="720" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQsZgatnMD_eKs3HQc3mIi7TCYCQgJttileGpOun6baxk06avqHn6EQXoLg0o-z9tDjvJNy13EJnbcDIhLZYySfbvEuARAKBCd2BwACXaMhgguXSFiPCvZzooIJ-jOtTETFPPEJxfpuNlG/s400/20180531_145045.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><i>Noise-cancelling headphones, dim/no light,</i></span><br />
<span style="font-size: x-small;"><i> </i></span><span style="font-size: x-small;"><i>neck support, heating pad, bed, and meds are all </i></span><br />
<span style="font-size: x-small;"><i>essential </i><i>for me to show show any sign of improvement.</i></span></td></tr>
</tbody></table>
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On the drive home today, the brimmed hat I was wearing in addition to the sunglasses AND closed eyelids was not able to block out enough of the light coming in the windows. The faintest glow that still got through my closed lids was painful, making all my symptoms worse. For the first time today, on top of my radiating and shooting and aching pains throughout my entire body, unimaginable exhaustion/fatigue, increasing nausea and disorientation... I needed to actually cover my face with multiple layers of Josh's shirt (he was driving) placed on top of my sunglasses AND my still-closed eyelids, reclined seat, neck support (Josh's shorts), and quiet car for a time in order to finally gain some relief. <br />
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Many of the most severe M.E. patients are completely bedridden and feel this sensitive to light, sound, and touch every day of their life.... some of them "eating" through feeding tubes because digestion requires too much energy. As I haven't eaten yet today for the exact same reason (the three french fries I tried gave me an awful gut ache and indigestion), and as I begin to rely on my service dog for mobility support at home now as well as in public (like to help me get from the bed to the bathroom today),<b> I feel myself getting closer and closer to that severe existance every day. I DESERVE AN ACCURATE DIAGNOSIS BEFORE I GET THAT BAD. </b>Other doctors are still just telling me to "go home and take better care of my health" and to "exercise as much as possible". They don't understand the danger that is putting me in. It's just not right. Thank God I finally found someone who will listen. Actually looking forward to the testing that will likely be hell on Earth to live through.</div>
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xo -R.<br />
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<i style="font-size: 11pt; white-space: pre-wrap;">The secret that even most of the medical community doesn't know about is that <b>CHRONIC FATIGUE IS A SYMPTOM, NOT A DISEASE.</b> Fatigue can certainly be debilitating, but it is not a disease in and of itself. If you or someone you know suffers from chronic fatigue, you need to find out where it's coming from, because you <b>could be suffering from something much more dangerous</b>, such as Myalgic Encephalomyelitis. Doctors don't know that CFS doesn't really exist, so you need to be your own advocate! (HFME.org can explain when and how the confusion took place when the term "chronic fatigue syndrome" was created by one lazy CDC worker in the eighties.)</i></div>
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<i style="font-size: 11pt; white-space: pre-wrap;"><div style="text-align: left;">
<i style="font-size: 11pt;">I am impatiently awaiting my appointment with a new primary care physician that will hopefully be more helpful in accurately diagnosing and treating me. I wrote down everything I need him to know since I know my cognitive symptoms interfere with my ability to communicate at doctor appointments. Below is what I plan to hand over to my new potential PCP. The first half is my own personal case history, and the second half is my research on myalgic encephalomyelitis.</i></div>
</i><br />
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<span style="font-size: 14.6667px; font-style: italic; white-space: pre-wrap;"><br /></span></div>
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<i style="font-size: 11pt;">If you don't have the ten minutes it will take to read this, then get the two-minute version by <b>reading everything in bold...</b></i></div>
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<i style="font-size: 11pt; white-space: pre-wrap;"><b><br /></b></i>
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<i style="font-size: 11pt; white-space: pre-wrap;"><b><i style="font-size: 11pt;"><b>••••••••••••••••••</b></i></b></i></div>
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<i style="font-size: 11pt; white-space: pre-wrap;"><b><br /></b></i>
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<div dir="ltr" id="docs-internal-guid-5e9d86c8-86f3-2f72-6fc5-502bd81a4d57" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<div dir="ltr" id="docs-internal-guid-7a8547cc-5af2-17e6-99d1-f55ca4987dd9" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; text-align: left;">
<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> ALL I SEEK IS AN ACCURATE DIAGNOSIS & APPROPRIATE MEDICAL CARE. </span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">After earning my master’s degree at 24, I was a </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">full-time English teacher for 13 years</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> as well as a part-time athlete: a runner, a weightlifter, a yoga instructor. I played roller derby</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">and</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> trained for triathlons through multiple illnesses, chronic diseases, immunosuppressants, major surgeries, and a variety of severe infections all for many years</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. (</span><a href="http://ronnilee-fightingforit.blogspot.com/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">RonniLee-FightingForIt.blogspot.com</span></a><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Then on April 18, 2016, after a week of feeling fluish (Dr. apt) and a week of feeling anemic (iron/ferritin labs), I experienced a </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">sudden onslaught of progressive, debilitating symptoms stemming from seemingly every bodily system at once </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">(see list below), causing me to leave work in the middle of the day for a desperate visit to urgent care that revealed only inconclusive results.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I was never able to return to work or any of the above activities again. From that day forward I have hardly had the strength to get out of bed most of the time, and </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">ever since I have struggled enormously to complete even the most basic level of personal hygiene tasks or the smallest of household chores</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">, always taking frequent breaks from being winded, nauseated, weak, dizzy. Over-exertion or uncomfortable temperatures can leave me bedridden for days or weeks at a time, but even scarier is the </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">steep decline in my cognitive function.</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> I’ve seen </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">no significant improvement of symptoms in over two years and have no reason to expect any in the foreseeable future</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. (Both my previous PCP and my psychiatrist agree in writing on that point at least.)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">After a variety of basic blood tests, a referral to endocrinology to check cortisol function, and a referral to rheumatology to rule out autoimmune diseases, all to no avail, my primary care physician hesitantly settled on fibromyalgia as a “working diagnosis” under direction of the rheumy, and then </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">he gave up on any further testing or efforts to find a more accurate diagnosis for me</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. He has since shuffled me into med-management, just reiterating at each appointment how imperative it is that I try my best to exercise every day.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Although I have many overlapping symptoms with fibromyalgia, I agreed that the fibro diagnosis didn’t quite fit me. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">The fact that my symptoms involve the cardiovascular and nervous systems means that to me they were and are scary</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">, so for over a year I searched for answers by myself. I recorded symptoms, analyzed mind-body reactions, researched endlessly online, aggressively looked for patterns, reasons, strategies, diagnoses... and I finally found my answer, the missing puzzle piece. However, by then everyone assumed it was psychosomatic. The more I tried to insist on further testing, the less my doctors believed me. So eventually I gave up, even though </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">the closer I came to the truth, the more afraid I became about my own prognosis</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I have recently lost half my disability income for the rest of my life because of having a “questionable” diagnosis with no real evidence yet. I have until May to appeal this decision, so now I find myself with good reason to renew my efforts to document evidence of my illness.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Daily and in Waves </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">(severity varies daily & hourly)</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">:</span></div>
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<span style="font-family: "Times New Roman"; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Severe</span><span style="font-family: "Times New Roman"; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> fatigue and lethargy</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Weakness / shakiness</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Arrhythmia</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Dizziness / lightheadedness</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Orthopedic intolerance (markedly significant decrease in symptoms when prone or reclined)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Post-exertional neuroimmune exhaustion</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Increased bruising</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Severe cognitive impairment / fogginess</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Inability to focus</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Inability to multitask</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Significant</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> memory impairment, both short-term and long-term</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Slow or inadequate information processing (visual stimuli, conversations, reading, TV, etc)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Aphasia: difficulty in finding words, forming sentences, remembering details, simple math, worsening dyslexia</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Digestive Shut-down</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Total loss of appetite</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Frequent nausea</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Increase in GERD symptoms (med breakthrough)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Upper abdominal pain with digestion</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Occasional “Stitches” = the same exercise-related transient abdominal pain (ETAP) that I used to get when long-distance running, only now they happen from simply digesting a meal, even if I am sitting or reclined.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Inability to maintain homeostasis</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Temperature instability / intolerance (i.e. environmental, exertional, digestive, etc)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Night sweats / cold sweats / hot flashes</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Cold extremities</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Pain & Neuropathy</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Body / muscle aches, pains, tension, trigger points</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Worsening neck stiffness, pain, subluxation, exposed nerves between vertebrae (C6 & C7)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Frequent intermittent numbness/tingling in hands</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Repeated various infections (viral, bacterial, fungal)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Overactive senses / processing disorders</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Sensitivity to light </span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Sensitivity to clothing / pressure / textures</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Sensitivity to noises or chaos</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Very</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> easily overstimulated</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Very</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> easily overwhelmed</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Restless sleep</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Insomnia</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Inability to reach deep sleep</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">NEVER wake up feeling refreshed</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Mornings are most difficult -- takes a couple hours of meds & massage before I can even get out of bed.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Total loss of libido</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Mild long-term vision impairment</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">During or After Activity or Stress </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">(sensitivity varies widely day-to-day)</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">:</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Tachycardia</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Shortness of breath</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Weakness / exhaustion</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Excessively hot / sweaty</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Delayed onset (up to 24+ hours)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Total loss of cognition</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Total loss of speech / words</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Sense of urgency (adrenaline)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Hyperventilation</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Vomiting / dry heaves</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Physical collapse</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Syncope</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Post-exertional malaise</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Delayed recovery (can be weeks on end)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Symptom Progression/Cycle:</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Below is a description of </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">dysautonomia </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">written by a doctor specializing in chronic pain and fibromyalgia. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">It is EXACTLY what happens with my pattern of symptoms</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">and has been emailed to my doctor with no response</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. By now the panic part of the below equation has subsided since I now know where the symptoms are coming from, but the following description of the progression of physiological responses and symptoms is the </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">most accurate description I have found for</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">what I experience multiple times per day...</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 10pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">When [patients] are under stress, the stress hormones are not released during the stressful period. They just keep working, utilizing normal energy and feeling exhausted from the whole ordeal. Eventually the ordeal is over, they get to go home to rest (super-duration). Any additional physical activity or any mental activity causes the threshold level to be reached and the stress hormones begin to be dumped into the body (hyper-excitability). The patient experiences a rapid heart rate, a sense of urgency, and shortness of breath. Adrenaline begins to circulate in the body and the patient feels hot, cold or sweaty. Because the person is not doing anything stressful at that particular moment and can see no significant precipitating factor to elicit this type of response, the patient may become more fearful. The patient begins to hyperventilate and the heart rate goes up faster, inducing extra adrenaline to be secreted and the other stress hormones to be released rapidly (super-susceptibility). Eventually the patient reaches a point of extreme panic (super-reactivity) and are often brought to the Emergency Room for work up and to be treated with various medications and sent home with usually negative findings. </span></div>
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</span><span style="font-size: 10pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><div style="text-align: left;">
<span style="font-size: 10pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">“</span><span style="font-size: 10pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">Within a short time the same process will be repeated. These cycles will continue until all the stress hormones are exhausted from the adrenal glands and from the central nervous system. Then the cycles will stop so that the body can regenerate all of the stress hormones. If these patients will later again experience another stressful condition until the delayed threshold is reached, the panic attack cycle will repeat itself. Therefore </span><span style="color: #980000; font-size: 10pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">dysautonomia of the hormonal stress response elicits what many times people consider to be panic attacks of unknown etiology</span><span style="color: #980000; font-size: 10pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">.</span><span style="font-size: 10pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">”</span><span style="font-size: 10pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;"> </span></div>
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<a href="http://www.prohealth.com/library/showarticle.cfm?libid=7850" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">http://www.prohealth.com/library/showarticle.cfm?libid=7850</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> </span></div>
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<span style="font-size: 14pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">▪ MYALGIC ENCEPHALOMYELITIS ▪</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">[ = “Inflammation of the brain and spinal cord with associated muscle pain” ]</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“About 90 percent of people with ME/CFS have not been diagnosed.”</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> (CDC)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">A lot of misinformation exists in the professional health care communities surrounding myalgic encephalomyelitis and chronic fatigue syndrome, causing doctors to attribute severe neurological and cardiac symptoms to “chronic fatigue”, which in turn costs many ME patients their lives</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. Since ME is also a disease of the cardiovascular and immune systems, the deaths get chalked up to heart attack or cancer instead of ME, only reinforcing the idea that ME or CFS are harmless. Make sure you get your information from sources who know that </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">FATIGUE IS ONLY A SYMPTOM, NOT A DISEASE</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> in and of itself. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Do the research!</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">M.E. RESOURCES</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Myalgic Encephalomyelitis / Chronic Fatigue Syndrome</span></div>
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<a href="https://www.cdc.gov/me-cfs/index.html" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://www.cdc.gov/me-cfs/index.html</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Myalgic Encephalomyelitis: International Consensus Criteria</span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> B. M. Carruthers, et al. Journal of Internal Medicine, </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">The Association for the Publication of the Journal of Internal Medicine</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">270; 327–338.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Download PDF: </span><a href="http://www.name-us.org/DefintionsPages/DefinitionsArticles/2011%20Consensus%20Criteria.pdf" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">http://www.name-us.org/DefintionsPages/DefinitionsArticles/2011%20Consensus%20Criteria.pdf</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Myalgic Encephalomyelitis: Symptoms and Biomarkers</span></div>
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Neuroinflammation in the Brain of Patients with Myalgic Encephalomyelitis</span></div>
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/29348371" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://www.ncbi.nlm.nih.gov/pubmed/29348371</span></a><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Neural Consequences of Post-exertion Malaise in Myalgic Encephalomyelitis</span></div>
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/28216087" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://www.ncbi.nlm.nih.gov/pubmed/28216087</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls</span></div>
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<span style="font-size: 11pt; font-weight: 700; white-space: pre-wrap;">PharmacoEconomics - Open</span></div>
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<span style="font-size: 11pt;">Healthcare Interventions and Outcomes</span></div>
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<span style="font-size: 11pt;">ISSN: 2509-4262 (Print) 2509-4254 (Online)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Download PDF</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">: </span><a href="https://link.springer.com/content/pdf/10.1007%2Fs41669-018-0071-6.pdf" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://link.springer.com/content/pdf/10.1007%2Fs41669-018-0071-6.pdf</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">A review on cognitive behavioral therapy and graded exercise therapy in ME</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Subtitle: CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Neuroendocrinology Letters, Volume 30 No. 3 2009</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Download PDF: </span><a href="http://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">http://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Cytokine signature associated with disease severity in chronic fatigue syndrome patients</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Proceedings of the National Academy of Sciences. August 22, 2017. 114 (34) E7150-E7158; July 31, 2017. https://doi.org/10.1073/pnas.1710519114</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Peer-reviewed</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Download PDF: </span><a href="http://www.pnas.org/content/114/34/E7150.full.pdf" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">http://www.pnas.org/content/114/34/E7150.full.pdf</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">TED Summit: What happens when you have a disease doctors can't diagnose</span></div>
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<a href="https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose/up-next#t-7538" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose/up-next#t-7538</span></a><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;"> </span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Small Heart Disease</span></div>
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<a href="https://www.healthrising.org/blog/2016/06/27/chronic-fatigue-syndrome-small-heart-disease/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://www.healthrising.org/blog/2016/06/27/chronic-fatigue-syndrome-small-heart-disease/</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">No ‘Recovery’ in PACE Trial, New Analysis Finds</span></div>
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<a href="http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">PACE: The research that sparked a patient rebellion</span></div>
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<a href="http://senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">http://senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Hummingbirds’ Foundation for Myalgic Encephalomyelitis</span></div>
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<a href="http://www.hfme.org/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">http://www.HFME.org</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">National Association of Myalgic Encephalomyelitis</span></div>
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<a href="http://www.name-us.org/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">http://www.NAME-US.org</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Nightingale Research Foundation</span></div>
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<a href="https://www.nightingale.ca/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://www.nightingale.ca</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">M.E. OVERVIEW</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Myalgic Encephalomyelitis (ME) is a chronic degenerative neuro-immune disease described in medical literature as early as 1935. </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">A child or</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">adult with ME has serious immune and cardiovascular abnormalities, with resulting serious CNS (central nervous system) consequences due to brain injury. </span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, end-stage renal failure, and cancer. The unrelenting pain, cognitive impairment and exhaustion of ME are often literally unspeakable. Most times ME strikes relatively quickly (within hours, days, weeks). </span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Active and productive children and adults are suddenly robbed of vitality, with disability ranging from completely bedridden to somewhat functional. Variable disability and lack of treatments result in lowered or poor quality of life. </span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“ME usually progresses to premature death due to direct and indirect complications of the disease</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. Among the leading causes of death are heart failure and cancer, average life span 58.7 and 47.8 respectively, which is considerably younger than the general population (heart failure, 83.1; cancer, 72).</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">”</span></div>
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<a href="http://www.name-us.org/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">www.NAME-US.org</span></a><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Newton’s earlier small study had found reduced heart mass and significantly reduced blood pumping by the heart, and Miwa in Japan has produced </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">three studies showing that smaller hearts are present in people with ME” </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">(due to atrophy).</span></div>
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<a href="https://www.healthrising.org/blog/2016/06/27/chronic-fatigue-syndrome-small-heart-disease/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://www.healthrising.org/blog/2016/06/27/chronic-fatigue-syndrome-small-heart-disease/</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Still searching for an accurate diagnosis with no real solid answers, I emailed my PCP multiple times during fall and winter of 2017, explaining that </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">I was afraid of causing my own death from overexertion. I begged for further testing</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">, a referral to neurology, a referral to cardiology, a stress test, a phone call to the Stanford dysautonomia testing lab, anything. Just please “get me on a treadmill before my health insurance runs out”. He did not approve of any of these measures. </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">His only advice</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">: no matter what, the most important thing you can do for yourself is that you </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">keep exercising daily</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. Just keep walking and using the painkillers to get through your day… and stop obsessing about your symptoms. So I did. Or at least I tried. Then I discovered M.E. and learned I was right to be afraid for my life.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Aerobic activity and repeated activity beyond an </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">[</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">M.E. patient’s</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">]</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> threshold worsens prognosis</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">.”</span></div>
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<a href="http://www.name-us.org/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">www.NAME-US.org</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Dr. Elizabeth Dowsett says of ME patients, ‘</span><span style="color: #980000; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">.’</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">”</span></div>
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<a href="https://documentingme.net/2014/02/16/is-me-fatal-a-different-perspective/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://documentingme.net/2014/02/16/is-me-fatal-a-different-perspective/</span></a><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> & </span><a href="http://www.hfme.org/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">www.HFME.org</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">There are deaths [in M.E. patients] due to cardiac failure, brain death, tumours, and liver failure. There are sudden deaths following exercise/overexertion, and deaths which occur after a long period of slowly worsening illness. </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Many of these deaths are due to overexertion caused by mistreatment</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> and so could have been avoided, if patients had been given basic appropriate medical care...</span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Patients with M.E. must be given access to the appropriate care and support as soon as possible after becoming ill. This only rarely occurs currently. Access to the appropriate care has an enormous impact on the course of the disease in M.E.; many and perhaps even </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">MOST severely affected M.E. patients would not have become severely affected had they been given the basic correct care and support when they were first ill</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">“</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">Today very few of those that are housebound by M.E. receive any appropriate medical care at all, and few patients are diagnosed very early on in the course of the disease and advised to avoid overexertion, as is appropriate. Thus the numbers of those with severe M.E. continue to rise, needlessly...</span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">What is so tragic about deaths from M.E. is that </span><span style="color: #980000; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">many of these deaths could (along with much of the suffering and severity of M.E.) have been prevented if only those patients had been given the basic level of support and care made available to patients with illnesses with comparable care needs such as multiple sclerosis and motor neurone disease.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">“</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">Deaths also sometimes occur in M.E. as a result of suicide. As Dr Elizabeth Dowsett explains, 'It has to be said that suicide in younger patients and in earlier stages of the disability is related to the current climate of disbelief, rejection of welfare support and loss of educational and employment prospects. It is an additional and potentially avoidable factor.'</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">“</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">Very often those with M.E. who commit suicide do so NOT because they are depressed but out of desperation. Because they are so ill and disabled and have no access to even basic care, or the most minimal support from friends and family... Thus </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">deaths for suicide in M.E. could also have been prevented if only M.E. patients were given basic appropriate care</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">.</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">..</span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“Moderate M.E. is more disabling than the most severe version of many other diseases and so also causes a high level of suffering.”</span></div>
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<a href="http://www.hfme.org/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">www.HFME.org</span></a></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Numerous studies support the assertion that exercise and, consequently, GET [graduated exercise therapy] can aggravate several characteristic ME symptoms, e.g. neurocognitive complaints, reduced exercise capacity, and widespread musculoskeletal pain, and amplifies pre-existing pathophysiological abnormalities in ME, e.g. immune dysfunction, induction of the IO & NS pathways, channelopathy and an impaired stress response. Large-scaled patient surveys and clinical practice show that </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">CBT/GET </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">[</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">cognitive behavioral therapy/graduated exercise therapy</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">]</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> often induces a deterioration of the clinical status of ME patients and is harmful for many patients</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">.</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">“</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">Therefore, it is </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">medically unethical to subject ME patients to CBT/GET</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;"> programs or variants, like GET with limits (Nijs et al. 2008), without assessing biological abnormalities, monitoring functional impairment objectively and measuring the effect of exercise e.g. on the physical and neurocognitive performance (e.g. by using exercise test/retest measurements, blood analysis, and neurocognitive tests).</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">”</span></div>
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<a href="http://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">http://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively [and heart failure, 58.7], which is considerably younger than those who died from cancer and suicide in the general population</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">.”</span></div>
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<a href="http://www.name-us.org/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">www.NAME-US.org</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">(M = 58.8 years)</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"> mortality</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">, and they had a directionally lower mean age of death for suicide (M = 41.3 years) and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">”</span></div>
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<a href="https://www.ncbi.nlm.nih.gov/m/pubmed/28070451/" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">https://www.ncbi.nlm.nih.gov/m/pubmed/28070451/</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">As with a wide variety of illnesses (lupus, multiple sclerosis, and ovarian cancer for example) there is as yet no single test which can diagnose M.E. in all patients. Therefore, like these other illnesses, M.E. must be diagnosed by taking a detailed medical history, noting the type and severity of symptomatology and other characteristics of the illness and the type of onset of the symptoms. (</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">An acute or sudden onset of symptoms is always seen in M.E. and this onset type rules out a wide variety of other illnesses associated with gradual onset</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">). A series of tests may also then be necessary to rule out or confirm a suspected M.E. diagnosis…</span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">The one essential characteristic of M.E. is acquired CNS dysfunction. </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">We have excellent tools for measuring these physiological and neuropsychological changes: SPECT, xenon SPECT, PET, and neuropsychological testing...</span></div>
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<span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“One objective and reproducible technique for determining and measuring functional disability that should be used consistently is Cardio-Pulmonary Exercise Testing</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration. The test is well established, sedentary and ill norms are published and the technology is relatively inexpensive and quite available...</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">“</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">In the absence of a second exercise test, the lack of any significant differences for the first test would appear to suggest no functional impairment in [ME] patients. However, the results from the second test indicate the presence of [an ME] related post-exertional malaise. It might be concluded then that </span><span style="color: #980000; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">a single exercise test is insufficient to demonstrate functional impairment in [ME] patients. A second test may be necessary to document the atypical recovery response and protracted malaise unique to [ME]...</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">This article examines the legal and scientific basis on which an exercise stress test can provide medically acceptable evidence of disability for the patient. This research group's excellent work </span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">proves the post-exertional disability that ME patients suffer, much worse on average than heart failure and COPD patients</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">...</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">“</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Tests which together can be used to confirm an M.E. diagnosis include…</span><span style="font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">”</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">SPECT and xenon SPECT scans of the brain</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">MRI scans of the brain</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">PET scans of the brain</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">EEG/QEEG brain maps</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Neurological examination</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Neuropsychological testing</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">The Romberg test</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Immune system tests</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Insulin levels and glucose tolerance tests</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Erythrocyte Sedimentation Rate (ESR) tests</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Circulating blood volume tests</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">24 hour Holter monitor testing</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Tilt table examination and standing/sitting/reclining blood pressure tests</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Chemical stress tests</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Physical exam</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Mitochondrial Dysfunction</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">TH1/TH2 imbalance</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Natural Killer Cell Function (Activity) testing</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Abnormalities of the 2-5A pathway (RNase-L ratio)</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Virology</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">In-Depth Heart Function</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Neurocognitive testing</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Sleep studies</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Endocrine testing</span></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">doctors & specialists @ </span><a href="http://www.hfme.org/metests.htm" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">www.hfme.org</span></a><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> & </span><a href="http://www.name-us.org/MECFSExplainPages/TestAbnormalities.htm#TOP_10_TESTS" style="text-decoration-line: none;"><span style="color: #1155cc; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; text-decoration-line: underline; text-decoration-skip-ink: none; vertical-align: baseline; white-space: pre-wrap;">www.name-us.org</span></a></div>
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<span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Out of all of the types of tests listed above, the </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">only ones I have had access to</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> other than a basic physical exam are one </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">sleep test that came back</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">abnormal</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> and some </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">blood tests</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">, some of which came back </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">abnormal</span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> and </span><span style="font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">NONE of which involved any form of exercise, cardiopulmonary function, neurological function, or neck/head/brain scan.</span></div>
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</script></div>Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.com0tag:blogger.com,1999:blog-2879466065973431818.post-18698780877436250772016-09-30T15:42:00.002-07:002019-06-27T17:18:43.507-07:00Missing in Action<span id="docs-internal-guid-d0b9dc71-7d28-1306-7354-5bb9ff25ca55"></span><br />
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<span id="docs-internal-guid-d0b9dc71-7d28-1306-7354-5bb9ff25ca55"><span style="font-family: "arial"; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;">I know I’ve been MIA for quite a while, and I truly apologize about that. I have not been writing new posts, responding to comments, or answering emails. The reason I have been absent is that I needed to focus on me for a while because I have had a LOT going on. I have moved houses twice, bought a house (with ten acres attached!), moved classrooms twice, became a licensed yoga instructor, underwent another major abdominal surgery, and I have just recently gone through the entire grieving process of dealing with a brand new debilitating and isolating diagnosis. (Notice the new change in my blog subtitle.) Due to this new illness, I am in the process of attempting to retire from teaching and am dealing with a whole new set of circumstances, challenges, and emotions.</span></span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">But today - today I am feeling the need to turn to my blog. I've been through the diagnosis, research, tackle, coming-to-terms process enough times that I was able to get through it all fairly quickly with this latest condition. But now I am angry and frustrated at the external/society side of this issue, and don’t know what else to do about it except write.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">This blog is called Fighting For It. I have been fighting for everything tooth and nail for so long... that I eventually began to run out of fight. Four years ago I said on this blog that I was going to use what little fight I had left in me to make it through surgery when I had my large intestine removed. Little did I know I would be facing massive complications, chronic pouchitis, and continuing diagnoses. It was going to take a lot more fight than what I had left to give.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">By the end of it all, I was diagnosed with </span><b style="font-family: arial; font-size: 14.6667px; white-space: pre-wrap;">fibromyalgia. </b><span style="font-family: arial; font-size: 14.6667px; white-space: pre-wrap;">[UPDATE: It turns out I was misdiagnosed. I actually have myalgic encephalomyelitis as explained in future posts.]</span><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;"> An illness that most people know nothing about but think they do. Here’s what I can tell you about fibro: no one really knows what it’s like to have fibro until you actually have it. And then you understand. You understand why people with fibro lose their jobs, their family, their friends, their houses, their husbands, and often their will to live. (<i><a href="http://ronnilee-fightingforit.blogspot.com/p/studies-research-on-fibromyalgia.html" target="_blank">Click here to read my "<b>Studies & Research on Fibromyalgia</b></a>".</i>)</span><br />
<span style="font-family: "arial";"><span style="font-size: 14.6667px; white-space: pre-wrap;"><br /></span></span><span style="font-family: "arial";"><span style="font-size: 14.6667px; white-space: pre-wrap;">To see the progression of all the large and small things my health has encountered over the years (almost all of them chronic), see my "<b><a href="http://ronnilee-fightingforit.blogspot.com/p/quick-chronological-history-sharon.html" target="_blank">Personal Health History</a></b>" page. You will find that <span style="font-size: 14.6667px; line-height: 20.24px;">I have been dealing with both mental and physical illness and diagnoses my whole life... but</span> I never gave up. I ALWAYS struggled to overcome my obstacles. Fought to not let them hold me back in life. Fought to prove I could still be just as valid and strong of a person in spite of my illnesses.</span></span><br />
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<span style="font-family: "arial";"><span style="font-size: 14.6667px; white-space: pre-wrap;">When I was a teenager dealing with severe ADD, severe cystic acne, major clinical depression, anxiety, and a new diagnosis of ulcerative colitis with all of its tests and treatments among all the other normal throes of teenage-hood, </span></span><b style="font-family: arial; font-size: 14.6667px; white-space: pre-wrap;">I fought for it</b><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">. I fought for my independence and for my sanity. I fought to stay in school. I fought to get on honor roll. I fought for my diploma. And I fought to get into college.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">When I was in my early twenties, trying to make it through school while still dealing with ulcerative colitis and ADD in addition to delayed sleep phase disorder and a blossoming suicidal bipolar disorder, </span><b style="font-family: arial; font-size: 14.6667px; white-space: pre-wrap;">I fought for it</b><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">. I fought to continue working to put a roof over my head and food on the table. I fought for my good grades. I fought for my bachelor’s degree. Fought for my teaching certification. Fought for my master’s degree.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">When I was in my mid-to-late-twenties, managing a highly stressful career teaching at an alternative high school in one of the most violent cities in the nation with one hand and holding a live-in emotionally abusive relationship with a borderline personality disorder at bay with the other, all while struggling to break out of my extreme codependency along with continuing to manage all the other diseases and disorders that never went away, </span><b style="font-family: arial; font-size: 14.6667px; white-space: pre-wrap;">I fought for it</b><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">. I fought for my blossoming career, and I continued to work. I fought for my identity and self-worth. I fought for my freedom.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;">When I was in my early and mid-thirties, after moving to a new city on my own and dealing with an even more stressful version of the same career, watching my large intestine come out of me in pieces and living with the pain that entailed, surviving serious immunosuppressive drug therapies and surgeries that went awry….. <b> I fought for it.</b> I went to work, teaching a classroom full of behaviorally-challenged, at-risk teenagers on days that most people would not have even gotten out of bed. I exercised when my body was failing. I suffered through unbearable side-effects while continuing to force myself to go to work and take care of myself. I fought for my health. </span><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">I fought for physical fitness. </span><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">I fought to keep a roof over my head. I fought not only to stay in my career but to be successful at it.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">My point in telling you all this is that if I was looking for a way out or a reason to be lazy I would have found it a LONG time ago. Maybe my mistake was fighting so hard all along. Maybe I made it all look too easy all these years.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">I am entering my late thirties, and now in addition to the ADD, anxiety, bipolar disorder, delayed sleep phase disorder, chronic recurring infections of various types, and many other continuing health issues I haven't even mentioned here, I have fibromyalgia. <b>And I’ve got nothing left. </b> Fibromyalgia steals all the energy, strength, and stamina it takes to be a fighter. Managing my health has become my full time job because every little daily task now has to be seen as a battle plan, so I have nothing left for the big stuff. (Read "</span><a href="https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwiQusbrmLjPAhVL_WMKHQGsDQ8QFggeMAA&url=https%3A%2F%2Fbutyoudontlooksick.com%2Farticles%2Fwritten-by-christine%2Fthe-spoon-theory%2F&usg=AFQjCNFgIExbmnltnt0HxgvpieqtJMIkTw&sig2=_pqAVHJQx2c_fmUdgQcNPA" style="font-family: arial; font-size: 14.6667px; font-weight: bold; white-space: pre-wrap;" target="_blank">The Spoon Theory</a><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">" to understand more.) And now on top of all that, I have to deal with the ugly stigma of society and the hesitation of doctors when it comes to this controversial but very real diagnosis.</span><br />
<span style="font-family: "arial"; font-size: 14.6667px; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="font-family: "arial"; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;">It's true that I have had many illnesses and diagnoses and that I have fought very hard my whole life not to let any of them hold me back. But <b>t</b></span><span style="font-family: "arial"; font-size: 14.6667px; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">his disorder of the nervous system is the most physically and mentally debilitating and incapacitating illness out of anything I have ever experienced. </span><span style="font-family: "arial"; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;"> It’s the one that has taken me totally out of the game when nothing else did. Yet it is <i>invisible</i>, so I feel like I always have to prove to people (doctors, employers, family, disability analysts) how sick I am, which comes with even more identity issues, feelings of guilt, and questions of self-worth to wrestle with. But nobody quite believes me.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;">I have not been without a job since I was fifteen years old. I paid for my own car at sixteen and moved out of the house at eighteen. I have been living on my own since then, fighting for survival, going to school, working, keeping a roof over my head and food on the table, and even supporting others during most of that time. Again, if I was looking for a way out or reason to be lazy, I would have found it a hell of a long time ago.<b> But I didn’t. </b>And people still don’t fully believe me when I tell them I can no longer work full time. Doctors, disability analysts, significant others, and society supposedly all think this is something I can just “get over” or “get a handle on” with a little practice and then go back to to my old life like nothing happened. I’m sorry, but that’s just not at all realistic, and if I start trying to make myself see things that way, I am going to do some major damage to both my psyche and my long-term prognosis by trying to achieve something that is not humanly possible. Apparently they don’t understand that my old life is what </span><span style="font-family: "arial"; font-size: 14.6667px; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">caused</span><span style="font-family: "arial"; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;"> my illness. Getting back to it is never going to be a reasonable or effective solution.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">All I'm working towards right now is disability retirement, which would only provide me with <i>half</i> of my salary, which would still require me to work part time (hopefully from home where I can better control my meds, rest, food, bathroom use, work environment, etc.) in order to make up the other half of the salary I need to pay mortgage and bills. And even with half disability and working part time, I would be bringing home less money overall than if I was teaching full time. Not to mention now paying out the butt (pardon my french) for health insurance now that I have no more health benefits, which means </span><i style="font-family: arial; font-size: 14.6667px; white-space: pre-wrap;">significantly </i><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">less take home pay. This goal of part-time work and part-time disability is not an unrealistic goal for someone with my complex health map and constant pain levels. But somehow I am still in the position where I have to fight for it! I have to fight the system just to work part time instead of full time. And that makes me angry because as I said before, I am out of fight.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">Fibromyalgia is a condition that tends to get worse over time. Doctors will sometimes try to argue this, but if you look at the actual medical studies, the message boards, and the support groups where you can hear from thousands of sufferers, you will find an overwhelming amount of evidence that supports that the symptoms of fibro get worse and the ability to treat the condition get more difficult over time and with age. ESPECIALLY if the stressors and triggers of the condition are not actively removed and continue to exacerbate symptoms instead of being replaced with healthy treatment plans. My biggest triggers have always undoubtedly come from work. From trying to keep up with a job that I can't realistically keep up with. If I attempt to work again, whether part or full time, I will have much less time, energy, and focus to spend on my treatment plans. The more I work, the more stress I will feel, and the lower-quality treatment I will be able to provide for myself. Right now, although all the other symptoms are definitively debilitating, I don't have a lot of the really bad wide-spread body pain that most fibromyalgia patients suffer with. One of my biggest fears is that the process of trying to go back to work because "doctors think that I can" will cause my fibro to become so bad that I can no longer get comfortable enough to fall asleep or be touched by my husband, as is so common in the support groups. The quality of life that I can still salvage is diminishing the more I stress my mind and body.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">Apparently everyone (and by "everyone" I mean my PCP, my psychiatrist, and my fiance) also thinks that if I get on disability I will just totally "give up" and become a useless lump for the rest of my life, drowning myself in Facebook and Netflix. I don't know what I've done that would cause anyone to think I would just give up on life, but whatever. I have already spent this time off developing daily schedules and weekly schedules and monthly schedules of treatments, routines, therapies, meditations, medications, exercises, work tasks, household chores, and even long-term goals and projects that will hopefully keep me healthy and sane.... and it will keep me quite busy!! </span><i style="font-family: arial; font-size: 14.6667px; white-space: pre-wrap;">But it is all just a goal right now</i><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">. Lately I've been too drugged up on pain-killers, nausea-killers, and anxiety-killers to be able to adhere to any kind of sleep or work schedule because all the stress from this disability stuff and valid anxieties about my lack of ability to support myself have been triggering emotional crisis mode, which comes with emotional eating, which along with the stress leads to recurring bacterial, fungal, and viral infections... which require more drugs, viscous cycle, etc.</span><br />
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<span style="font-family: "arial"; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;">Doctors will begrudgingly admit some of my requests (such as a longer "off-work" note required by the disability company) after an embarrassing display of panic and tears on my part, but they never fully believe or get behind what I am telling them. How I am working with swiss-cheese for brains and how incredibly difficult or sometimes impossible that makes completing small tasks or holding conversations. How I never feel rested. EVER. How mustering the strength to get out of bed or leave the house can take everything I’ve got. How the nausea makes it impossible to eat, but lack of food makes symptoms worse. (And how by-the-way that food better be carb-free or I’ll be in hell from the infections for weeks!) How I am constantly teetering between major depression and hypomania, and how much effort and focus it takes to keep myself in the middle. How my body attempting to regulate it's own temperature for just an hour or two outside my temp-controlled sunroom can use up all my energy for the whole day. How I get so easily overstimulated and overwhelmed by all the sights, sounds, movement, and chaos in public environments such as a grocery store that I sometimes feel as though I may have a panic attack. How trying to manage and coordinate all of the symptoms and treatments and side-effects and medications and appointments and paperwork and fallout from ALL of my diagnoses put together (all on a swiss-cheese brain) makes me really feel like I am actually going crazy. </span><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">How I have maxed out what I am able to realistically deal with at one time. </span><span style="font-family: "arial"; font-size: 14.6667px; white-space: pre-wrap;">How fucking far out of the question it is to ask me to take on a full time job on top of all of this…….. I think I will have to end up on a psych hold or asylum with a permanent ostomy from my failed j-pouch and unable to be touched by anyone or anything before people will start taking me seriously.</span><br />
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<b><i><span style="color: #990000;"><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2014/03/nuts-about-scd.html">Previous Post</a> </span></span></span></i></b><b><i><span style="color: #990000;"> <span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2016/09/missing-in-action_62.html">Next Post</a> </span></span></span></i></b></div>
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</script></div>Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.com2tag:blogger.com,1999:blog-2879466065973431818.post-20183228310866141972014-03-27T16:39:00.001-07:002016-10-04T16:55:56.925-07:00Nuts About SCD<div class="separator" style="clear: both; text-align: left;">
I have a million things I need to catch up on around the house and on the computer that I REALLY should be getting to, but instead I'm sitting down to write this blog post because I can't help myself. I have been so pumped about cooking on the Specific Carbohydrate Diet (SCD) that I have to get it all written down.</div>
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I've been on the SCD diet for about a week and a half. I've been using all organic, free-range, whole ingredients which has me feeling amazing. I lost about ten pounds in my first week, and then as I added more fats and fruit to my diet during week two, I started to stabilize. Keep in mind that the actual SCD diet calls for a very gentle intro stage for people with a lot of inflammation (Crohn's/Colitis), but since I don't have the bleeding, cramping, diarrhea, etc, I decided to skip the intro. Therefore, some of what I was eating (whole nuts, dried fruit, certain veggies) are advanced stages of the diet meant to be introduced well after all symptoms disappear. Here's what my diet looked like during week one:<br />
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<li><b>Breakfast</b>: Scrambled eggs (sometimes with spinach added) topped with melted cheddar and salsa. Sometimes I would add avocado.</li>
<li><b>Lunch: </b> Wholesome stew. I browned a pound of ground turkey and put it in the crockpot with celery, carrot, broccoli, zucchini, onion, cauliflower, and a whole jug of what is basically an organic version of V-8. Nothing but nutrition in this puppy. Served with melted grated cheddar on top.</li>
<li><b>Dinner:</b> Grilled chicken with sides of peas and acorn squash.</li>
<li><b>Snacks: <span style="background-color: #cccccc;"><a href="http://www.baresnacks.com/all-natural-cinnamon-product.php">Apple chips</a></span></b>, a handful of nuts, or a <b style="background-color: #cccccc;"><a href="http://shop.larabar.com/">Larabar</a>.</b></li>
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Then as I noticed how much weight I was losing, I tried finding ways to add more calories back in. I started browsing Pinterest SCD recipes and getting inspired. I started thinking about how to adapt some of my favorite comfort foods for SCD. I joined an online SCD support group where I could turn to with questions, frustrations, or victories. And I started getting pumped up about it.... and motivated to get creative in the kitchen. And every creative recipe I tried turned out wildly successful, which has only fueled my enthusiasm.<br />
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First off, I should inform you that I am no whiz in the kitchen. I know the basics, and I cook for only myself, so I generally don't have enough time or interest to get creative with the measuring cups and spatulas. However, since SCD mandates that almost everything be made from scratch at home, I have been experimenting more in the last two weeks than I have in the last decade.</div>
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Most of the meals I've been making are not off of any specific recipe; they are just combinations of whole ingredients I already have in the house that sound like they would work. Usually I get an inspiration off of some food photo or scrap of recipe and then change and adapt it to fit my needs. Regardless of all this, everything I have made so far has turned out absolutely amazing. Super tasty comfort foods that don't make me miss sugar or carbs at all. In fact, I often can't even tell there's no sugar or grains in most of what I make.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxqRaQ5Mogl_DSkLs4YifFnUxQsxiNP32ahR22UMP9qdOda_n1f2O12WLT9DURM9vqQ_VHcEnWuGUBKOob6h-r84Gm3DnbN4-bc_iwtYaDJozhx9ZEsQuK0uEWsGBCkXXX1_hQYrleDZvl/s1600/IMG_20140326_133759_119.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="205" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxqRaQ5Mogl_DSkLs4YifFnUxQsxiNP32ahR22UMP9qdOda_n1f2O12WLT9DURM9vqQ_VHcEnWuGUBKOob6h-r84Gm3DnbN4-bc_iwtYaDJozhx9ZEsQuK0uEWsGBCkXXX1_hQYrleDZvl/s1600/IMG_20140326_133759_119.jpg" width="320" /></a></div>
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I have found that with all the condiments and batters and mixtures and concoctions I'm making, having a high-quality, high-powered food processor makes things much easier and quicker in the kitchen, so yesterday I invested in a $200, 1500 watt, 2 horsepower Ninja food processor. It comes with all the attachments I need for all my mixing, processing, and smoothing demands and has made a big difference. If you're going to try this diet for any serious length of time, I would recommend getting something similar.</div>
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Becuase I'm already developing a collection of hit recipes less than two weeks in, I figure I should start a page on this blog of all my favorite SCD concoctions. Below are some photos of a few of the meals I've made so far. (I'm not photographing EVERY meal I make.) If any of them look appetizing, look for the recipe in my new resource page called <b style="background-color: #cccccc;"><a href="http://ronnielee-fightingforit.blogspot.com/p/favorite-scd-recipes.html">Favorite SCD Recipes</a>.</b></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU_4nqobwHx2kJ1jQlAj3PEeYwG0X9I9ltfUD0qfRMZn_u5wrMJF56IzS3tsXnBJaL3rNFsPnaQBlOcxISv_uny06epOUMl-ixV5AfQ_o2jbMaroR8qJINoRtpeslkwUuA-FkI-IiZBBGM/s1600/IMG_20140327_133617_239-1.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU_4nqobwHx2kJ1jQlAj3PEeYwG0X9I9ltfUD0qfRMZn_u5wrMJF56IzS3tsXnBJaL3rNFsPnaQBlOcxISv_uny06epOUMl-ixV5AfQ_o2jbMaroR8qJINoRtpeslkwUuA-FkI-IiZBBGM/s1600/IMG_20140327_133617_239-1.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">Grain-free pancakes with butter and homemade jam.<br />I made a huge stack of them, but this is all I could eat at once.</span></b></td></tr>
</tbody></table>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8D4R_sS4Dcw2Jac9A4yEAPiIjOAUJzYkqR2TtgAM3z6-_CBBOjuHW81QPCgodDM5j1sJqnh3pzSUsWzCBEOrAjUQ3VtgRS7hen-mAPeovDZWK0hzh02hpjZJDCOdu5wmpS0BQAhnObOSG/s1600/IMG_20140321_204917_249.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8D4R_sS4Dcw2Jac9A4yEAPiIjOAUJzYkqR2TtgAM3z6-_CBBOjuHW81QPCgodDM5j1sJqnh3pzSUsWzCBEOrAjUQ3VtgRS7hen-mAPeovDZWK0hzh02hpjZJDCOdu5wmpS0BQAhnObOSG/s1600/IMG_20140321_204917_249.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">Zucchini Fries with homemade honey mustard dipping sauce - YUM!</span></b></td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqNkcN7BmreAMRDp3_1ad9nWSt89lYWSPZLIaAfu4-LPCkI5vfkdAiFcrh9KsJWoFEWoU8pWY-Cm3lA5SlqWHV8asRRjYNI0EjwtBKIdiU_jPL9FYxZMEwz9Vm9VMG_tO9zgCNTEMAXmS3/s1600/IMG_20140325_200205_758.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqNkcN7BmreAMRDp3_1ad9nWSt89lYWSPZLIaAfu4-LPCkI5vfkdAiFcrh9KsJWoFEWoU8pWY-Cm3lA5SlqWHV8asRRjYNI0EjwtBKIdiU_jPL9FYxZMEwz9Vm9VMG_tO9zgCNTEMAXmS3/s1600/IMG_20140325_200205_758.jpg" width="310" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">Cheeseburger Casserole: childhood comfort food.</span></b><br />
<span style="font-size: small;"><b>SO GOOD.</b></span></td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFUWTaZunvoA6PVVa3y9Llg66zRhUIc9LQmUh7t6mUy3XX_KfTDMeuSFqx3uxVX_eOn4y49OVJ4NeXc8n9iJvL1mRoDj2wQIP-N82BYb3BLmU6jeRwXY7MqR6FfU9OG2chHuqG6LVIaQlg/s1600/IMG_20140325_200211_779.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFUWTaZunvoA6PVVa3y9Llg66zRhUIc9LQmUh7t6mUy3XX_KfTDMeuSFqx3uxVX_eOn4y49OVJ4NeXc8n9iJvL1mRoDj2wQIP-N82BYb3BLmU6jeRwXY7MqR6FfU9OG2chHuqG6LVIaQlg/s1600/IMG_20140325_200211_779.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">Homemade Ketchup - almost like Heinz!</span></b></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtXhSouLw5wsnMBLqPxBjsXaTmaOJ9vCXuv4rM2jPAWEoz-oolpKTnOuIV6sCSb5NOTLNuynuXyrvU8-uiBCOWsYllmSie20f1RsY2BR4I4ZcNxsKZcdAOPUQ0sbvntGTFcTkYT05jLXvi/s1600/Banana+Bread+Muffins.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="288" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtXhSouLw5wsnMBLqPxBjsXaTmaOJ9vCXuv4rM2jPAWEoz-oolpKTnOuIV6sCSb5NOTLNuynuXyrvU8-uiBCOWsYllmSie20f1RsY2BR4I4ZcNxsKZcdAOPUQ0sbvntGTFcTkYT05jLXvi/s1600/Banana+Bread+Muffins.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">Banana Bread Muffins - Serve warm with a little butter: DELISH!</span></b></td></tr>
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<b><i><span style="color: #990000; font-family: "times" , "times new roman" , serif;">Feel free to leave reactions and comments below...</span></i></b></div>
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<b><i><span style="color: #990000;"><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2014/03/serious-about-sibo.html">Previous Post</a> </span></span></span></i></b><b><i><span style="color: #990000;"> <span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2016/09/missing-in-action_62.html">Next Post</a> </span></span></span></i></b></div>
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</script></div>Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.com5tag:blogger.com,1999:blog-2879466065973431818.post-76273679432549481932014-03-15T04:30:00.001-07:002016-10-04T16:52:06.838-07:00Serious About SIBO<div style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;">
<br /></div>
The more I research and learn about small intestinal bacterial overgrowth (SIBO), the more I realize that various aspects of my complex medical situation created the perfect storm for this incredibly difficult-to-treat catastrophe to take place. When I look at a list of potential SIBO causes, I can check off most of the items on the list: GI disease, GI surgery, post-op complications, long-term and repeated antibiotic use through the surgeries, immunosuppressive prescription drugs, steroid prescription drugs, acid-blocking medications for my GERD, a high-carb diet for my j-pouch... all happening during the same one-year time period. I was a goner before I had ever even heard of SIBO. Once I realized this, I wondered why no one had mentioned to me the possibility of developing this nightmarish condition. It would have been nice to be prepared for this risk so that I could have tried to take some sort of preventative measures. None of my three GI's, my primary care physician, nor my surgeon ever brought it up, and when I asked about what might be causing my symptoms and what to do about it, none of them knew much of anything about how SIBO works or how to treat it. Then I realized that it's because western medicine in general knows practically nothing about it; of course they don't bring it up with patients. So now that I know, here I am trying to spread the word to the public. If you are going through any sort of GI distress, be sure you know how to prevent, recognize, and treat SIBO before it gets out of control, because once that happens, you are probably in for years of hardship trying to treat it.<br />
<br />
But before we get into that, I should tell you that I recently was referred to a GI expert at UCSF for this <br />
SIBO issue. Her response was to run upper and lower endoscopies, biopsies, and an MRI to look for other causes including but not limited to celiac indicators or a stricture that could slow motility.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYcHsqwcOLDIl-V96LsD4xzZXJjREjjlLukqiO1JoRv5X3MTmzIMxQSmxQL6Oli8TgjMINARQZ3S6taPWFi5VZFf5FWEExXsBJXp0EqUcuaizhchHU9FHj-BNHuDU0X7qKZGGEWBqH9yXu/s1600/endoscopy.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="137" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYcHsqwcOLDIl-V96LsD4xzZXJjREjjlLukqiO1JoRv5X3MTmzIMxQSmxQL6Oli8TgjMINARQZ3S6taPWFi5VZFf5FWEExXsBJXp0EqUcuaizhchHU9FHj-BNHuDU0X7qKZGGEWBqH9yXu/s1600/endoscopy.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><b>my rectal cuff showing cuffitis ulcers on my j-pouch</b></span></td></tr>
</tbody></table>
Results of these tests showed a small hiatal hernia, ulcers on my j-pouch, cuffitis, two types of metaplasia in my ileus and j-pouch, and inflammation in my stomach, ileus, and j-pouch, but no celiac, stricture, or other markers she was looking for in reference to the SIBO. I had a lot of questions for the doctor about these test results, but the only part she was concerned about was the cuffitis for which she prescribed Canasa. (See our Q & A email exchange cut and pasted at the bottom of this post.) Basically she discovered what my GI would have discovered anyway at my first annual scope but was no help with the SIBO issue. So I have been continuing to rely on my own at-home research and treatment methods.<br />
<br />
Every time I try to go on a restricted diet to treat my SIBO, not only do I have a difficult time restraining myself psychologically, but the physical pain and struggles in the bathroom that are caused by the increase in fiber eventually derail me, and I break down and grab something starchy that will calm down my j-pouch and relieve the misery, which in turn derails my SIBO treatment plan. The dietary treatments for my two health issues work against each other, so it's been incredibly frustrating not knowing which direction to go, which means I've been doing a lot of yo-yo-ing back and forth... I go with one diet until I can't take the symptoms any more and switch to the other one. Well now that I have identified the cuffitis as exacerbating if not causing some of my symptoms, I have been able to treat that piece at least using a different route. Now that I seem to have the cuffitis mostly taken care of (Cortifoam worked much more quickly and easily than the Canasa), hopefully the fiber piece of that dietary battle will be a little easier. So here I go again...<br />
<br />
This time I'm preparing not for a short-term restrictive dietary treatment but for a serious long-term dietary/lifestyle change. I've realized (after almost a year of failed attempts and further research) that treating this is going to require a much bigger commitment than I was previously willing to fork over. But at this point I know I'm left with practically no choice. <br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiENh83kCNI094fT6Eca45TpvS8a7uomUgKIWTvEXShgcSKekhIGIXiNDs0d73q-x36aJJ1hEGt7at4a1fpfaSKKAwMznXwYd4OpOFajgcf-QNPjXMpVCMsVAof5qNAMZtOFQQvfB02s23z/s1600/The+Vicious+Cyle.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiENh83kCNI094fT6Eca45TpvS8a7uomUgKIWTvEXShgcSKekhIGIXiNDs0d73q-x36aJJ1hEGt7at4a1fpfaSKKAwMznXwYd4OpOFajgcf-QNPjXMpVCMsVAof5qNAMZtOFQQvfB02s23z/s1600/The+Vicious+Cyle.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><b>The "Vicious Cycle" of intestinal damage caused by<br />SIBO (from <i>Breaking the Vicious Cycle)</i></b></span></td></tr>
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From my recent research, I know that if I allow SIBO to go untreated, it will not only continue to plague me with worsening symptoms, but it will continue to damage my intestinal wall, causing irritation, inflammation, ulceration, and malabsorption. I'm sure that's where my j-pouch ulcers came from, and I'm now convinced that's also what caused my iron levels to plummet me into full-blown anemia ten months AFTER the UC and surgeries were over. The malabsorption issues would only get worse as my small intestine suffers further damage and as the bacteria grows and eats up more of my nutrient supply. When the intestinal wall suffers enough damage, bacteria and larger food particles pass through to the blood supply which can cause your body to react in the form of fatigue and higher sensitivity to allergens (both of which I have been experiencing recently).<br />
<br />
I have been through so much the last few years, and I was under the impression that once I was on the other side of the surgeries, things would be okay again, and I could stop worrying about what I eat, what supplements I need, what medications I'm on, symptoms, side-effects, etc. And today here I am, over a year out from surgery and still dealing with all that same bullshit, feeling helpless and hopeless. It took me several days to come to accept the fact that I had potentially one to three years of very strict dietary restrictions ahead of me. No cheating, no half-assing. Apparently the only way I can get rid of this thing requires a very significant long-term commitment on my part that is sure to be filled with struggles, obstacles, and serious tests of will power on a daily basis that will even spill over into my social life. It took me several days to come to accept this fact. I did not like it one bit, and this threw me into a deep depression. None of it seemed fair. I knew that if I had any kind of shot, I needed to process these emotions until I came to a place of acceptance, but I just couldn't quite get myself there.... I had to pat myself on the back when I recognized that one of the first things I did was seek help: emailing a dietitian, asking an acquaintance for the name of a therapist, seeking out a local support group... Still, my willingness to accept my situation was slow going until I had a long talk with my significant other. Something about that conversation centered me and brought me back to what I need to focus on: moving forward. Knowing that he was not only supportive and behind me one-hundred-percent but ready, willing, and even enthusiastic to jump in and gain the health benefits of eating the same way I will be (at least when we're together) did a lot for my confidence in my ability to succeed.<br />
<br />
So now I'm gearing myself up. I did some more research and found some interesting new information. It turns out that probiotics are the least effective branch of treatment for SIBO and can sometimes do more harm than good (specifically the <i>pre</i>biotics that usually come in the probiotic products). This is why I'm choosing to focus on the antimicrobial supplements that I listed in my last post and more importantly, diet. Through my research I came across a doctor who seems to be one of the leading experts on SIBO, Dr Allison Siebecker (cited below). <br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://img1.imagesbn.com/p/9780969276814_p0_v1_s260x420.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="Breaking the Vicious Cycle: Intestinal Health Through Diet" border="0" src="http://img1.imagesbn.com/p/9780969276814_p0_v1_s260x420.jpg" height="320" width="207" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: x-small;">This book explains and outlines the<br />Specific Carbohydrate Diet</span></b></td></tr>
</tbody></table>
She recommends the Specific Carbohydrate Diet (SCD) as pretty much the best dietary plan out there for treating SIBO. This is an eating plan I had tried very briefly for my UC in the past to no avail since my UC was too far gone by then, but I didn't realize until after I saw that recommendation that the diet was originally designed for SIBO, so I went back and took another look at the book <i>Breaking the Vicious Cycle </i>(cited below). It's important to read the book before going on the diet since there is a lot to it, but in a nutshell the end result is to cut out all forms of sugars, sweeteners, starchy carbs, grains, starchy vegetables (including soy), and most dairy due to the lactose (hard, aged cheese is okay). The only naturally sweet things allowed are limited amounts of fruit and honey. The rules on this are very strict and even apply to trace amounts of sugars or sweeteners in condiments, marinades, dips, drinks, etc, since the bad bacteria will jump on any particle they can find. For this reason any type of processed foods are pretty much out, so the diet consists mostly of natural, organic meats, vegetables, and healthy fats with a few nuts and fruits thrown in. <br />
<br />
I'm getting ready to start the diet on Monday, so this weekend I'm having a farewell party for all my favorite processed junk foods. Meanwhile, I've been browsing Pinterest for SCD-friendly meals, and I was very impressed with what's out there and excited to try some of the recipes I found. (You can view my favorites <a href="http://www.pinterest.com/bootstrap7/scd/" target="_blank"><b style="background-color: #cccccc;">here</b></a>, but keep in mind that I have not reviewed all ingredients yet to ensure everything I pinned is completely SCD-friendly.) Oh, and if any reader decides to try this diet for yourself, be sure to download the <a href="https://play.google.com/store/apps/details?id=com.nutritiongang.scdbuddy" target="_blank"><b style="background-color: #cccccc;">SCD Buddy</b></a> app for easy on-the-go checking on which foods are legal.<br />
<br />
One foreseeable obstacle with this plan I have not yet had a chance to attack is the fact that eating this way will require most of my food to be made from scratch at home (including most condiments), which will be incredibly time consuming. I already have to schedule in extra hours for sleep every day due to my j-pouch waking me up throughout the night, and now I will need to add several hours a week of cooking on top of already feeling exhausted most of the time. I haven't quite figured out how I'm going to designate more hours in my week to food prep yet, but I'm definitely going to need some go-to easy soups, salads, and stir-fries that I can pre-cook for my workday meals. However, I will still have to spice things up with the new recipes on the weekends in order to keep from feeling too deprived or bored with the same simple meals every day. Maybe my man and I will have to start turning date nights into prepping, baking, and cooking food at home instead of going out to eat.<br />
<br />
One other thing I will have to keep in mind as I start down this path is that as I cut out my largest source of calories, I will have to be very careful of what I'm demanding of my body in the area of exercise. I've been chomping at the bit to throw myself into running and weight-lifting and dancing classes and roller derby workouts... but have not been successful there either due to anemia, bronchitis, j-pouch symptoms, changing diets, etc. Now that the cuffitis is better I should be in less GI pain, but I will be setting myself up for fatigue and injury if I get too enthusiastic with exercise the same week I nix all carbs. Specifically weight-lifting and distance running while cutting out my main source for glycogen stores will be a bit of a balancing act and will require time for my body to adjust. One thing working in my favor, however, is that I can consume as much protein as I want, which will be great for repairing and building muscle as well as trimming down unnecessary fat.<br />
<br />
I will try to keep you all posted as I navigate the new path of trying to stay athletic and fit while on an indefinitely long-term, no-carb, no-cheat diet. I will probably stumble here and there, and I may even fall face-first into the mud, but I will never stop picking myself back up, dusting myself off, and trying again to move forward. Because that's what I do.... because, of course, I'm a fighter.<br />
<br />
<h2>
Sources</h2>
<ul>
<li>The book<span style="background-color: #cccccc;"><b> <i><a href="http://www.breakingtheviciouscycle.info/">Breaking the Vicious Cycle</a> </i></b></span>by Elaine Gottchall </li>
<li><b style="background-color: #cccccc;"> "<a href="http://www.siboinfo.com/diet.html">SIBO - Small Intestinal Bacterial Overgrowth</a>" </b>by Dr Allison Siebecker </li>
<li><span style="background-color: #cccccc;"><b> "<a href="http://www.townsendletter.com/FebMarch2013/ibs0213_2.html">Small Intestine Bacterial Overgrowth: Often-Ignored Cause of Irritable Bowel Syndrome</a>" </b></span>by Allison Siebecker, ND, MSOM, LAc, and Steven Sandberg-Lewis, ND, DHANP </li>
<li><b style="background-color: #cccccc;"> "<a href="http://scdlifestyle.com/2011/08/how-to-tell-if-you-have-small-intestinal-bacterial-overgrowth-and-what-to-do-about-it-scd-podcast-25/">How to Tell if You Have Small Intestinal Bacterial Overgrowth and What to Do About It</a>" </b>by Jordan Reasoner </li>
<li><b style="background-color: #cccccc;"> <a href="http://www.biotherapy-clinic.com/gi_small_intestinal_bacterial_overgrowth_sibo.html">Biotherapy Clinic</a> </b>featuring highly-trained holistic medical practitioners </li>
</ul>
<div>
<br /></div>
<h2>
Test Results Q & A</h2>
<div>
<br /></div>
<h3>
My email to the gastroenterologist:</h3>
<div>
<br />
Since I was drugged after the endoscopies, I never had a chance to go over results with you. I know your only concern was the cuffitis, but I like to know what's going on with my body. Here are my questions:</div>
<br />
1) Do you know what could have caused the ulcer(s) in my j-pouch? Why are you not concerned about them? Could it be Crohn's?<br />
<br />
2) I have inflammation in areas other than the cuff: stomach, ileus, pouch, etc... I assume this is not ALL cuffitis. So what could cause inflammation in other areas, and could it be contributing to my symptoms?<br />
<br />
3) Two types of metaplasia, due to chronic inflammation... From my prior UC, GERD, SIBO, or all of the above? Precursor to cancer? Why is it not a concern?<br />
<br />
4) Following up with local GI for cuffitis, but I originally came to you for the SIBO, which never got addressed other than a "try FODMAPs". Is that really all the help you can give me? I have been living with painful SIBO symptoms for almost a year and am at my wit's end.<br />
<br />
Thank you for any help.<br />
<br />
<h3>
<b>The doctor's reply:</b></h3>
<br />
Your upper endoscopy was completely normal. The biopsies with mild chronic inflammation are not significant and should not cause symptoms. We biopsy for h pylori and celiac which there was no evidence of. Every pouch is a little inflamed as small bowel is not meant to act as a reservoir for stool. Therefore we commonly see a little ulceration or inflammation in the pouch. Ulcers in the pouch are not diagnostic of Crohn's. You would need to see ulcers in the small bowel above the pouch which we did not see. It is unlikely that the normal appearing mucosa with mild inflammation on biopsy is contributing to symptoms. We would usually see redness, ulcers or swelling like we do in the cuff. Metaplasia is not a concern, dysplasia is a concern. There are no guidelines to follow metaplasia as it has never been shown to be of significance<br />
<br />
The best treatment for SIBO is rifaxmin 400 mg three times per day for 10 days. (alternatively 550 mg twice a day for 10 days). Insurance does not cover this but if you want to pay out of pocket we can send another prescription. You have tried cipro and flagyl before. Another possiblity is augmentin twice daily for 10 days followed by probiotics.<br />
<br />
[<i>Note: I've tried high-dose xifaxan, cipro, and flagyl. However, although the 14-day dose of any antibiotic works great for pouchitis, it doesn't seem to do much of anything for the SIBO symptoms, and when I come back to the doctor after that, I pretty much get a metaphorical shrug. As in, that's all they've got for me.</i>]<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_KrlykH-wq_FQkbD9jcwQ162exffdvngxkFKPA1ma0DUYGQkBtgK7eiz2ZsRPNhFOUyKVnq1l5c89xdepjIQ3emCgU2wAqpCfSku1WRlozFwUm1k6sEAm7FmRoNbNxC7ItrgLDY2EJpyA/s1600/New+Year's+Eve.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_KrlykH-wq_FQkbD9jcwQ162exffdvngxkFKPA1ma0DUYGQkBtgK7eiz2ZsRPNhFOUyKVnq1l5c89xdepjIQ3emCgU2wAqpCfSku1WRlozFwUm1k6sEAm7FmRoNbNxC7ItrgLDY2EJpyA/s320/New+Year's+Eve.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><b>Us at the Boom Boom Room in San Francisco <br />(I'm on the left, obviously caught mid-laugh.)</b></span></td></tr>
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First off, let me just say that I had a great New Years Eve partying it up in San Francisco with my cousin and her friends. We talked, drank, danced, laughed, counted down the new year, cruised the city, slept it off, and then woke up to have an amazing breakfast (okay, lunch) at a food truck festival downtown in the beautiful sunshine. We all agreed that 2014 was going to be a great year, maybe the best year yet for yours truly.<br />
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Now down to business. Overall my j-pouch finished healing and adjusting many months ago. However, I still have a couple related issues that have been causing me trouble. Once I get these two things under control, I believe I will be feeling 100% and able to really throw myself into being an athlete again. Here they are...<br />
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<h2>
Treating Microbial Overgrowth</h2>
In July I posted about having an overabundance of gas in my G.I. tract and how I was able to treat it with a simple fix. Well, it wasn't long before it came back, and it has been plaguing me ever since. The doctors have tried what they can do, but nothing has helped much. I also developed other symptoms, so I was dealing with painful bloating, excessive belching, excessive flatulence, intense perianal itching, and even cracks at the corners of my mouth at one point. This lets me know that it is affecting me top to bottom. I have been doing lots of research over the past several months and have learned that my issue is due to a severe overgrowth of either bad bacteria, bad yeast (fungus), or both, and it spans my entire G.I. tract indicating a pretty severe case.<br />
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Since my last blog post, I have realized that some of my undesirable j-pouch behavior may be due to mild pouchitis symptoms triggered by the bacteria and yeast overgrowth in my G.I. tract. My symptoms have mostly been overabundance of gas build-up in my stomach and intestine (no matter how much I pass up or down) and intense parianal itching. However, the more I learn about this problem and how it interacts with the gut and the gut's relationship to immune and brain function, the more I realize that my overall health and other issues may also be affected by this issue as well, such as lowered immune function (getting sick with cold and flu recently), fatigue, brain-fog, irritability, etc.<br />
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I have been living with this problem since late spring, and the doctors are at a loss after antibiotics and simple diet change didn't do a whole lot. So I have taken matters into my own hands. After doing many hours of online research, I have learned that this issue is very difficult to treat and can take up to six months to resolve more severe cases like mine, but there are things I can do to help. Treatment is a three-pronged approach: diet change; antibiotics and/or antimicrobial supplements (antibacterial, antifungal, antiviral); and strong probiotics. The diet change requires eating little or no foods that the bacteria and yeast can feed on, which is mostly any type of carbohydrate, so this means a low-carb diet. The antimicrobial supplements will help to kill off the bad bacteria and yeast, and the probiotics will replenish the gut with good bacteria and yeast that will take up "real estate" in my gut and help to block the growth of the bad bacteria and yeast. For severe cases, one branch of treatment alone will not do much, and all three need to be maintained for several months in order to fully treat the condition. To start this treatment, I decided to do a little kick-off at the new year.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-gpKx8l4-W0YmGr20yPltbPMakRk-keMXdncEu7cMRguUSEBctx6C8FbsxZB33BEqCaTWELvr5oIJDMxuTvpaAkFR859eT6fQZiUebT2CANgmrBb0tbxJVyg3T0_geIeHsq-FQkLRo1Sf/s1600/Cleanse.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="215" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-gpKx8l4-W0YmGr20yPltbPMakRk-keMXdncEu7cMRguUSEBctx6C8FbsxZB33BEqCaTWELvr5oIJDMxuTvpaAkFR859eT6fQZiUebT2CANgmrBb0tbxJVyg3T0_geIeHsq-FQkLRo1Sf/s320/Cleanse.jpg" width="320" /></a></div>
My plan was to starve the little buggars. If there is no food in my gut, they will have nothing to eat and will die. I have been fasting since Thursday, taking in only clear healing and antimicrobial liquids: slow-cooked homemade chicken bone broth, ginger tea, green tea, and other herbal teas. I have also been adding in a few other natural supplements that research shows to be more effective (and less toxic) than antibiotics or other prescription meds. They are all totally packed with powerhouse nutrients as well as strong antimicrobial and antioxidant properties: grapefruit seed extract, oil of oregano, and coconut oil. (Benefits of each food/supplement listed at the bottom of this blog post.)<br />
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Since I started this cleanse, I have been experiencing "die-off" effects, which is from the toxins that are released when large amounts of bacteria/yeast die, but fortunately they have not all been at the same time. Day 1 was severe weakness, fatigue, and sore throat. Day 2 was headache, short mild fever, milder fatigue. Day 3 (today) has been increased gas and chest congestion. The fatigue is mostly gone, but I am still taking it easy and mostly vegging out since I know my body is being taxed with processing the toxins and little-to-no food.<br />
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I found in my research that both chicken and hard aged cheese have practically nothing that the bacteria or yeast could feed on, so yesterday I had just a couple ounces of chicken topped with parmesan to give me some energy. I will probably have some more this evening and then start to carefully introduce specific foods tomorrow. If I could keep the fast going longer, I would aim for a full week, but unfortunately I return to work on Monday, and I'd like to be eating by then in order to have enough energy to deal with my classroom full of rowdy teenagers. However, as I start eating again, I will be careful to start with foods that have no or very little fermentable properties that bacteria/yeast could feed on (except yogurt=probiotics), and I will continue with the powerful antimicrobial supplements. This would be stage two of my plan, which will last about a week. Stage three is to introduce other foods for a fuller diet while still keeping everything as low-carb as possible (since bacteria and yeast both feed on carbs) and continuing with the supplements. This stage may last several months until I feel the issue has been fully treated.<br />
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<h2 style="text-align: left;">
Treating Iron Deficiency</h2>
The other issue I have been dealing with lately is iron-deficiency anemia. I have always had fairly low iron levels, but recently they have plummeted. I believe this is due to my history with UC, my surgeries, my omeprezole (GERD medication that blocks iron absorption), and my bacteria/yeast overgrowth that also interferes with absorption. I started feeling very weak, fatigued, short of breath from simple tasks, elevated heart rate, frequent scary/intense heart palpatations, and irritability. (Which means no working out for the past couple months.) I know that j-pouchers have a higher risk of both iron and B-12 deficiency, so about a year out from my surgeries I made an appointment to get my blood levels checked for any nutritional deficiencies that may be affecting me. Turns out everything was in normal range except for my iron. The most common test for iron is to check your ferritin level. Ferritin stores and releases iron in your blood and can give a very accurate measure of how much iron is in your system. Normal ferritin levels (depending on gender and age) range from around 15 up to 300. Mine was at a 1. My B-12 was also a little low. All my other abnormal blood results (hemoglobin, hematorcrit, red blood cell size, etc.) were all due to this iron deficiency, which constitutes a diagnosis of anemia.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl5WF6DgvFk6XEhXe-2lRA6B44_dbW9ioc-5tTDvQX41o1xwinSiOwlD2JDWV8n_2ipNa2UIa2rGbanRPH_rr88mTGOhZhNG85cjyPcTveIrc2J4j9wdei9AKgocIlif1pvLxkiRX-I1hN/s1600/2012-04-18_11-45-34_283.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="177" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl5WF6DgvFk6XEhXe-2lRA6B44_dbW9ioc-5tTDvQX41o1xwinSiOwlD2JDWV8n_2ipNa2UIa2rGbanRPH_rr88mTGOhZhNG85cjyPcTveIrc2J4j9wdei9AKgocIlif1pvLxkiRX-I1hN/s320/2012-04-18_11-45-34_283.jpg" width="320" /></a></div>
My primary care physician decided to send me to a hemotologist (blood specialist) in order to help resolve the issue. I immediately started taking iron supplements, but since my level was so low, and since I have a few factors interfering with absorption, the hemotologist set me up with iron infusions. The plan is to do two infusions, one week apart, and then wait a month to give my body a chance to respond by making more hemoglobin, hematocrit, etc., and then retest my levels to see if I need more iron. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9rDKlZMRDNmxu0NNQhVhQre_yTflS8DTGoRxVt2e47W7ojGF9TFEpmM5x-l9fx9J0dcybnDQ-RxFBD3DMyV1WcyOnI4mv7gV4kMtXO2pHaMzJrEfKer0oD-a51uxdPfwJE8EQFdUOK7e9/s1600/2012-04-18_12-14-03_294.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9rDKlZMRDNmxu0NNQhVhQre_yTflS8DTGoRxVt2e47W7ojGF9TFEpmM5x-l9fx9J0dcybnDQ-RxFBD3DMyV1WcyOnI4mv7gV4kMtXO2pHaMzJrEfKer0oD-a51uxdPfwJE8EQFdUOK7e9/s200/2012-04-18_12-14-03_294.jpg" width="111" /></a>My doctor thinks I may need at least four infusions to get me to a good level. After that, we will continue regular monitoring of blood levels and administer iron infusions as needed, possibly for the rest of my life if necessary. So back to the cancer center it was, since that's the only location around that does infusions of any kind. I just finished my second infusion yesterday. The lady at the counter asked if iron infusions make me feel like Popeye afterwards, but unfortunately that's not how it works. It takes weeks for the body to get blood levels back to normal once it's receiving enough iron, so I should be slowly feeling better over the next few weeks. The heart palpitations and shortness of breath are already gone. (Yay!)<br />
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So these are the two remaining issues affecting my health, and both are being treated effectively. Hopefully I should be feeling tip-top by spring. I truly believe that 2014 will be the year I stop feeling like a patient and start feeling like a normal person, which is very exciting to me. I am eager to feel truly healthy again and to get back into working out now that my anemia is normalizing. Still fighting on, as always!<br />
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<h2 style="text-align: center;">
Healing Foods and Supplements</h2>
<i>The following information is a compilation from many online resources. Feel free to Google "ginger benefits" (or whichever item you're looking up), and you will find all the same sources I viewed to collect this info.</i><br />
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<b><u>CHICKEN BONE BROTH</u></b><br />
Chicken bone broth, if made correctly, is packed with nutrients, minerals, and healing properties. It can be a powerful remedy not only on overall health and immunity but on the gut in particular. The gelatin in bone broth protects and heals the mucosal lining of the digestive tract and helps aid in the digestion of nutrients. It can fight infection, reduce inflammation, strengthen your immune system, reduce joint pain, and help with bone repair. The collagen and gelatin also support strong and healthy skin, hair, and nails. It should be a go-to remedy any time you have digestive issues or any type of infection (cold/flu). <br />
<b>Easy Prep</b>: I have found the easiest way to make homemade bone broth is to pick up a rotisserie chicken from the grocery store, strip all the meat to either eat or freeze, and then throw the carcass, bones, tendons, ligaments, and skin (all contain vital nutrients) into a crock-pot. Add a bunch of celery, carrot, onion, parsley, and garlic. You don't even have to chop it very small since it's all getting strained out in the end. Fill the rest of the crock-pot with water, cook it overnight (about ten hours), and it should be ready by morning. Just run it through a colander, and voila! I put mine in a pitcher in the fridge and heat it up by the mugful.<br />
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<b><u>GINGER</u></b><br />
Ginger is widely used throughout the world for a all sorts of digestive issues, including nausea, gas, bloating, loss of appetite, colic, diarrhea, upset stomach, and acid reflux. It improves digestion and absorption. It has also been known to treat/improve upper respiratory tract infection, bronchitis, cough, congestion, asthma, migraines, menstrual cramps, libido, immune system function, cancer, Alzheimer's, fat loss, arthritis, muscle pain, blood sugar stability, circulation, and to help protect and repair the liver. One of the main benefits for people like you and me is that it effectively reduces inflammation in the intestines. <br />
<b>Easy Prep</b>: I finely mince the ginger, simmer it in a saucepan for fifteen minutes, strain it into a pitcher, and heat it up by the mugful. You can also add a teabag to the cup for added flavor or other healing herbs.<br />
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<b><u>GREEN TEA</u></b><br />
Green tea is well-known to be a powerful antioxidant to reduce damage and aging to the body. It can improve blood flow, treat cancer, prevent clots, and lower cholesterol and blood pressure. It improves brain function and helps treat Alzheimer's and Parkinson's. It it also well known to stabilize blood sugar, protect against a high-fat diet, and increase metabolism to aid in weight loss. The amino acid theanine it contains can have a calming affect, helping you to relax and de-stress to aid in depression or anxiety. <br />
<b>Easy Prep:</b> Add a tea bag to a mug of very hot water (not boiling). Lemon helps boost it's effects, but milk does the opposite. Four cups a day is recommended for maximum effect. (Just watch out for the caffeine - you can get it decaf.) I plan to start drinking a cup every morning with lemon and honey when I first wake up, since the health and weight-loss benefits of both lemon and honey in the morning alre also well-documented. (Coffee can wait until I get to work.)<br />
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<b><u>COCONUT OIL</u></b><br />
Yes, it is a high-calorie food, but they're all GOOD calories and can actually effectively aid in fat loss. In addition to being antimicrobial (kills bacteria, viruses, and yeast/fungi), it can help regulate blood sugar and thyroid function, increase metabolism, give you energy, lower cholesterol, and aid in digestion and absorption. It is a powerful antioxidant, which means it reduces damage and aging to your body. It can also be used on skin and hair as a strong moisturizer/conditioner. <br />
<b>Easy Prep</b>: I either eat it by the spoonful (it has a mild coconut flavor) or put a dollop to melt in my tea. It can be used in place of oil or butter for cooking and can be added to just about any food recipe. It can also be found in capsule form if you want to add it to your daily pill regimen.<br />
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<b><u>OIL OF OREGANO</u></b><br />
A number of studies show that oil of oregano is a strong antimicrobial as well, killing bacteria, fungus, viruses, and parasites. It is an anti-inflammatory and antihistamine and promotes liver regeneration. It can also aid in digestion and intestinal healing; new research shows that it is just as powerful at treating colitis as prescription meds. A study reported in the journal <i>Experimental and Toxicologic Pathology</i> found that oil of oregano caused a significant difference in terms of ulceration, mucus cell depletion, inflammatory cell infiltration, vascular dilatation, crypt abscesses, and edema. It can also help prevent/treat cancer, cold, muscle pain, acne, dandruff, bronchitis, toothache, headaches, heart conditions, allergies, intestinal parasites, earache, fatigue, insect repellent, menstrual cramps, and urinary tract disorders. <br />
<b>Easy Prep</b>: I take 1-2 capsules at bedtime (since it can cause strong-flavored belches during the day.)<br />
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<u><b>GRAPEFRUIT SEED EXTRACT</b></u><br />
GSE is an incredibly powerful antimicrobial and disinfectant. It kills hundreds of strains of bacteria, fungi/yeast, and viruses. It has been shown to be more effective than antibiotics, alcohol, and surgical soap at treating and disinfecting. It is a very effective treatment and prevention for food poisoning, traveler's bug, colds, flu, herpes, toenail fungus, and any type of infection. It can also be applied to wounds. In liquid form, it can be mixed with a little olive oil to be put on cold sores overnight to effectively kill the herpes virus and treat the cold sore. It can be used to clean/disinfect anything around the house, can be sprayed on plants and bugs, and can replace chlorine in swimming pools. What's more is that it is completely safe for humans, pets, and the environment. AND it apparently has some magical ability to differentiate between the bad bacteria and the good flora in your gut. Supposedly it kills of the bad while leaving the good. Many people who have been using it for decades swear by it and say it's a must-have in every household. <br />
<b>Easy Prep</b>: For acute treatment I take two 125mg tablets twice a day. For long-term effects, I will reduce to one tablet twice a day.<br />
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<b>Other teas/herbs that are great for both digestion and overall health: chamomile, peppermint, clove, cinnamon.</b><br />
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<i>DISCLAIMER:</i> <i>Although the side-effects and contraindications are few and far between for these sorts of natural supplements, I have not listed them here. Please do your own research and/or talk to your doctor before starting treatment with any new supplement or dietary change.</i><br />
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Yes, you can continue living your life. With a functional j-pouch you should still be able to work, travel, participate in sports, etc., without having to worry about suffering from malnutrition or blood loss. However, bowel function will NEVER be as easy as it is with a healthy colon and rectum. Below are some of the long-term effects to be prepared for.</div>
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<ul>
<li>Unpredictable functioning. Frequency and consistency can change on a daily or even hourly basis with seemingly no cause or change in diet. You can feel fine one moment and then feel like you can't be far from a toilet the next.</li>
<li>Both increased frequency as well as certain foods (certain spices in my case) can cause the infamous butt burn to return, which can be very painful at times. It can also cause itching, irritation, and mild bleeding on and around the anus.</li>
<li>True you can eat just about whatever you want..... as long as you are willing to live with the consequences. Certain foods (whey and dark chocolate for me) will cause significantly increased frequency to the point that I'm going multiple times per hour. If I eat too much fiber, evacuation can become incredibly difficult and sometimes painful, with the constant urge to evacuate but inability to let much of anything out. But if I don't eat enough fiber, consistency can become so thin that it is difficult to maintain continence. Due to all this, diet can be a bit of a balancing act.</li>
<li>With a healthy colon and rectum you can feel the pressure of needing "to go" slowly build over the course of an hour or two, so you know when to prepare to make a bathroom stop. With a j-pouch, it is always all-of-a-sudden. Because the rectum wall and muscles are all gone, you don't have any sensation down there until it reaches the anal canal, which means that you can't feel anything until it's ready to come out the back door.</li>
<li>When you do have to go, although most j-pouchers can hold and control their bowels, that doesn't mean it is comfortable. It can be very uncomfortable or even painful to hold it in when you have to go. It is sort of like having a mild case of diarrhea at all times.</li>
<li>You have to have post-evacuation cleansing supplies wherever you go. If I forget to bring my flushable wipes with me or if I forget to refill my travel-pack in my purse and I am away from the house, my only choices are: 1) Don't go, which can be very painful and sometimes not an option. 2) Go but don't get all the way clean, which can cause rash, irritation, butt burn, and itching around the anus. 3) Go and use regular TP to clean yourself, which for me means I have to keep wiping until I am literally raw and bleeding from my anus. Sometimes I try to run the TP under the faucet to help clean more easily, but then the TP generally likes to disintegrate in my hand.</li>
<li>I wake up between two to five times per night to go to the bathroom, which means I hardly ever get more than three hours of sleep at a stretch. This means I'm generally in a constant state of mild sleep deprivation, which can have an affect on mood, ability to handle stress, overall health, and eventually lifetime longevity. I try to schedule extra sleep time at night and to catch up on the weekends by sleeping in as much as I can.</li>
<li>Increased gas. If you've been living with certain diseases, you may be somewhat used to this already. But gas comes much more frequently with a j-pouch than with a healthy colon, and if it happens to be behind a small amount of stool, you can't pass it without the stool coming out too, which means I frequently run to the toilet just so I can pass gas. In the cases that I do not have to run to the toilet to pass gas, sometimes it is smelly, and occasionally it is noisy, but most often when I pass gas, no one can hear or smell it.</li>
<li>Wherever I go, I have to be self-conscious about the noise I make in the bathroom. Whether I'm in a public restroom, using my restroom at work (only one door between the toilet and the main hallway where students and staff are passing by), a guest at a friend's house, at my fiancee's house, or even at home with my roommate around, I know that anyone in the vicinity can hear my loud bathroom noises due to the explosive nature of the gas and stool as they exit the body. I have to deal with this 5-15 times in a 24-hour period.</li>
<li>Almost every time I go, that same explosive way the stool exits the body tends to spray flecks of stool all over the back of the toilet bowl, the underside of the seat, and even the top of the seat occasionally. This means that at home I have to clean the toilet several times a week (or daily if I want it to stay clean), and when at someone else's house I have to inspect the toilet behind me and use TP to wipe down any messes I've made.</li>
<li>Certain sexual positions (specifically the ones that tend to shorten the vaginal canal for deeper penetration) are a bit more sensitive/painful. Although I have never had a leak during sex, sometimes the jostling of sex can make me feel like I have to go... rarely during but often at the end of sex, meaning I can't always just lay there relaxing and enjoying the post-coital glow afterwards. I will usually evacuate right beforehand in order to reduce chances of feeling the need to go during or after sex.</li>
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To people who are nervous about life-long symptoms, these effects can sound like a lot to deal with. However, it is important to remember that they are still better than living with the disease. They are not life-threatening, and their effect on overall quality of life is minimal compared to living with severe ulcerative colitis or Crohn's disease. I made this choice in order to save my life (which isn't really much of a choice, when you think about it), but I still don't regret having surgery because whatever difficulties I live with today are seriously chump change compared to what my life was like before my first surgery, when my UC was raging and I spent all day in bed, writhing in pain and running to the toilet 20+ times per day. At that point I had almost NO quality of life, whereas now my quality of life is fairly high. Again, it will never be quite up there with someone who was never diagnosed with a disease like this, but it is certainly the best I can hope to expect with the circumstances I was given to deal with.</div>
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On more of an athletic note, I have been feeling somewhat apathetic regarding working out the last couple of months, and I'm not sure why. I think it's been due to accepting the long-term effects of life with a j-pouch as well as dealing with my other health concerns (mainly the tumor in my kidney and it's testing and treatment). However, in the last week I have felt a growing determination to regain my prior level of fitness, muscle development, and strength, and so I have fresh motivation to jump on and stick to my workout routine yet again. Yes, it will be a little more challenging with a j-pouch, but it is by no means impossible. Starting this Monday I will be attending a dance class, attending a yoga class, strength training, and running again all on a weekly basis. I'm ready to feel like a fighter again.<br />
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<tr><td class="tr-caption" style="text-align: center;"><i><b><span style="font-size: small;">Pulling all my old roller derby gear out of retirement.</span></b></i></td></tr>
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<tr><td class="tr-caption"><b><i><span style="font-size: small;">I'm the one in the striped thigh-highs with the #3 on my helmet. </span></i></b> </td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><b><i><span style="font-size: small;">Dancing and workin' it out on my skates, trying to help <br />my team raise enough money to go to nationals.</span></i></b></td></tr>
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<b><i><span style="color: #990000;"><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2013/07/grabbing-life.html">Previous Post</a> </span></span></span></i></b><b><i><span style="color: #990000;"> <span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2013/10/j-pouch-reality.html">Next Post</a> </span></span></span></i></b></div>
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<b>(Over Seven Months Out From Takedown)</b></div>
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<span style="font-size: x-small;"><span style="background-color: #eeeeee;"><i><b><br /></b></i></span></span>
<span style="font-size: x-small;"><span style="background-color: #eeeeee;"><i><b> BM</b> = bowel movement <b>G.I. </b>= gastrointerologist <b>J </b>= what I call my j-pouch </i></span></span><br />
<span style="font-size: x-small;"><span style="background-color: #eeeeee;"><i><b> pouchitis</b> = inflammation of the j-pouch, usually caused by a bacterial imbalance </i></span></span><br />
<span style="font-size: x-small;"><span style="background-color: #eeeeee;"><i> <b>takedown</b> = reversal of the temporary ileostomy in order to hook up the j-pouch for use after healing </i></span></span><br />
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"With a hint of good judgment, to fear nothing, not failure or suffering or even death, indicates that you value life the most. You live to the extreme; you push limits; you spend your time building legacies. Those do not die." -Criss Jami, <i>Venus in Arms </i>(2012)<br />
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Apologies ahead of time for the long post, but I have a lot to talk about today!<br />
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First off, if you've been following my blog for a while, I'm happy to share that after a recent conversation with my lawyer, anonymity is no longer required. Although I still write under a pen name in order to maintain a little privacy from my students, I've gone back over every post and removed all the yellow circles that used to be covering my face in the photographs. While I was at it, I also added a couple new photos here and there, so feel free to go back and browse if you'd like.<br />
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Secondly, I will tell you a bit about some minor health events that have occurred in the last few months before I get to the fun stuff. A couple months ago, right before school let out for the summer, I got a little overly confident with J's progress, and I started working out more, changed my diet a bit, and added some powerful antioxidant supplements. Suddenly my frequency, urgency, and anal pressure was way up, meaning I felt like I pretty much had to go all the time (even right after a BM), but I would only pass a tiny bit at a time. My first conclusion: pouchitis triggered by a supplement that I had previously suspected used to aggravate my ulcerative colitis (mistakenly thought it would be safe since I no longer have a colon). When I figured this out, I immediately tossed the supplement in the trash and called my doctor, who started me on a round of Cipro (antibiotic commonly prescribed for pouchitis). This did the trick to reduce the urgency and frequency within 24-hours, but ever since then, my ability to sleep through the night has been shot. I've been hoping that I would slowly return to that point, and now after a couple of months, I think I am getting pretty close. Will be super excited if and when this happens.... hope it's before school starts in a couple weeks.<br />
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In addition to dealing with the pouchitis, I had been noticing a build-up of air in my stomach and intestines during the late spring and early summer. I'm not talking about your typical gassy j-pouch, but rather a painfully bloated belly, and no matter how much gas I passed (up or down), it just kept continuously filling back up. I lost my appetite because of it, and when I did eat, I couldn't fit much in my tummy since it was already full of air. It seemed to be the worst in the mornings. I figured that this was due to an imbalance of bacteria that was still sorting itself out from the two months of solid antibiotics that I was on following my takedown, and the recent week of Cipro hadn't helped. I'd been waiting for the issue to resolve itself while trying some generic probiotics as well as eating yogurt every day, but this didn't seem to do any good, and since the problem was sticking around for longer than I thought it should, I decided to call my G.I. I'm thankful I did. As we chatted over the phone, she said there were tests she could run, but first she had me try three modifications before I bothered with making an appointment for testing: <br />
<ol>
<li>Increase my omeprazole (for acid reflux) from once a day to twice a day. </li>
<li>Switch my probiotic to the name brand Align, since it has a specific strain of bacteria that she wanted to make sure I was getting (bifidobacterium infantis).</li>
<li>Cut way back on simple carbs, since that is what the bad bacteria feeds on. </li>
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I did all three, and the air was miraculously gone by morning. (Have I mentioned how much I love my G.I.?) I have since added carbs back in with no negative effects, and more recently - upon doctor's approval - dropped the omeprazole back down to one a day. I'm still taking the Align until the pack runs out (six week supply), and hopefully things will have stabilized by then. Problem solved.<br />
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Thirdly, I'd like to include an update on how my diet has changed since my last post. I am feeling much more positive since then because of what I have discovered as I've been experimenting with food. I've actually found out that I have very tight control over the density/consistency of my BM's strictly based on how many vegetables I include in my diet. In my last post, I was frustrated with the anal pressure and difficulty evacuating that stemmed from eating a high-fiber diet, so I had cut out all veggies. My BM's quickly switched over to a very watery consistency, which ended up being TOO loose, to the point where I was having increased frequency yet again and even some trouble keeping them in! Since then I have found a happy medium. The perfect balance seems to be one normal-sized serving of veggies per meal (who woulda thought?), which would be a good handful or two of cooked veggies or a small side-salad. If I keep it at this level, my stools remain loose enough to evacuate easily but thick enough to retain easily. The perfect consistency is about that of apple sauce or a milkshake. I'm glad that I can still get nutrients from vegetables and don't have to cut them out entirely, and I'm even more happy that I actually have reliable control over my BM's.<br />
<br />
The other dietary miracle I have discovered is that when my G.I. told me to cut out carbs (which was around the same time I was cutting out veggies - right after my last post), it had no negative effect on my j-pouch. At the time, my diet looked a lot like Atkins, but when I added a serving of vegetables to the mix to thicken things back up a bit, my j-pouch was a happy camper even without the carbs. Coincidentally, this high protein, low-carb diet caused me to drop weight like mad. So I have also discovered that I have pretty tight control over how quickly I lose weight by how many carbs I consume. If I want to trim down slowly, I can limit my carbs to small amounts. If I want to trim down quickly, I can cut out pretty much ALL carbs (especially simple carbs) and just increase my lean protein and healthy fat intake while my j-pouch remains unaffected. So a typical meal on this plan would look like any of the following:<br />
<ul>
<li>turkey steak, a side salad, and half a sweet potato with a little butter</li>
<li>chicken tenderloin with steamed veggies and a side of refried beans</li>
<li>spinach scramble topped with a sprinkle of cheese and avocado along with a greek yogurt</li>
<li>taco salad minus the chips: lots of diced chicken, shredded lettuce (not too much), shredded cheese, black beans, diced onion, diced tomato, avocado, a spoonful of salsa and plain greek yogurt (excellent sour cream replacement)</li>
</ul>
I should add that in recent years I have also learned to stop eating when I'm full. (I used to be a chronic over-eater. Like, I would eat till I felt sick at every meal.) Since I have always also been a very slow eater (I chew my food thoroughly), this gives my body time to realize it's satiated well before I've eaten the same amount as someone who eats more quickly. Does that make sense? So someone next to me could be eating one full serving of food in the same amount of time it takes me to eat half a serving or less, but we both get full around the same time. You can guess how this affects my health: I end up eating very small portions, which helps contribute to my trimming-down. Now, don't get me wrong... It still takes huge amounts of will-power to resist cookies, donuts, french fries, milkshakes, chips, crackers, etc, but I <b>can do it</b> if I want it bad enough. And as long as I give myself pretty small amounts of these things here or there (meaning OCCASIONALLY, on special occasions, not every day), I don't feel so deprived that I break and binge (a debaucle at which I also have great practice and skill). (Can you tell I have a bit of a parentheses fetish?)<br />
<br />
Since I am a person who likes being in control, I am very excited to know that I am back in control of both my stool consistency and my weight, and I am really stoked to be able to work towards my fitness goals just as easily as before. In fact, this may be the time in my life when it is the EASIEST to work towards my fitness goals since I am no longer sick and am all healed up and past all complications from surgeries.<br />
<br />
For the first few weeks of summer break, I was making it to the gym almost every day. I had to take a break due to a few things that popped up (travelling, house renovations, health issues), but between those weeks in the gym and the house renovations I've been doing (using power tools and lifting 60-lb bags of concrete, bags of sand, hundreds of 15-lb patio pavers, kitchen cabinetry, etc.), I've actually been gaining a good amount of strength, muscle and endurance through the summer. In order to keep the momentum going, I'm going to jump back into that daily gym routine starting tomorrow.<br />
<br />
These recent dietary and athletic developments have gotten me back down to fighting shape. Right now I am right around 135 (at 5'7"), which has been my goal weight for a long time. I still have a few trouble spots I'd like to see trim down a bit more (tummy, inner thigh, love handle area), so although I'm pretty happy with where I'm at, I still have goals. I'd like to lose another ten or so pounds of fat and gain a bit more muscle, and I'd still like to work on running and building my lower leg strength so I can endure a half-marathon without getting mega shin-splints.<br />
<br />
Since I have been feeling so incredibly healthy the last couple weeks because of everything I have discussed above, I have decided to finally get back into roller derby. I used to play for a league over three years ago, but had to quit due to both an injury and a move, and then when I normally would have picked it back up, timing was always terrible: I was starting a new job, or too sick to play, or going through surgeries, etc. However, I think I'm finally in a place where I can get back into it. In addition to being a whole lot of fun, the twice-a-week, two-hour-long practices are a KILLER workout, with frequent games to boot. I have found a league I want to join, and will be starting practice next week, which I am super stoked about, so you can expect pics of me on wheels in the near future. I can't wait to get back on my skates!<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_JARQfrqnTvuOE92mqxk5NFNu3jAPI6gVd94LL6MBaey916KqTkVumONfPbtifxsZCWYWmZ9JgeMmYINd7UJfIG6bpvIAc9Gmrx9Ds7_JU0x35L2oI1ST1glCuQQIH-EHrgc5hC3kqQBG/s1600/beach.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_JARQfrqnTvuOE92mqxk5NFNu3jAPI6gVd94LL6MBaey916KqTkVumONfPbtifxsZCWYWmZ9JgeMmYINd7UJfIG6bpvIAc9Gmrx9Ds7_JU0x35L2oI1ST1glCuQQIH-EHrgc5hC3kqQBG/s320/beach.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><b><i>You can't even see my scars!</i></b></span></td></tr>
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And finally, I should mention my recent travel adventures. In the beginning of the summer I took a trip down to southern California to visit some friends, which was a lot of fun. But even more exciting was a couple weeks ago when my manfriend and I flew down to Mexico and stayed at a five-star, all-inclusive resort on a beach in Cabo for a week. It was fantastic. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAvEE3-PvEPFggSCb05ninan3pZvNYfwQKmhjod909AITHSjIWvZW9-Hj0dfgVqoXVQ80gM6-o6LTKBDgBzZ0Amp-8fU3tIuZSORiHzW7MJbXRzzUzdnNkIu_6MIjfwO560fNQlR14ybni/s1600/pool-side.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAvEE3-PvEPFggSCb05ninan3pZvNYfwQKmhjod909AITHSjIWvZW9-Hj0dfgVqoXVQ80gM6-o6LTKBDgBzZ0Amp-8fU3tIuZSORiHzW7MJbXRzzUzdnNkIu_6MIjfwO560fNQlR14ybni/s200/pool-side.jpg" width="150" /></a>We spent a lot of time lounging by the pool and sipping mai-tais, pina-coladas, and daiquiris. We went for a romantic night-time walk down the beach, went on a snorkeling boat tour, took a taxi downtown to cruise the local shops and practice our bargaining skills at the flea market, splashed in the waves, chilled out (or rather heated up) in the hot tub at night, feasted on buffets, watched the nightly shows, and I even got a free SCUBA lesson in the pool. PLUS, I came back with a killer tan. We both had a blast and decided we are going to do a LOT more travelling in the future.<br />
<br />
My motorcycle has been sitting in the garage for most of the summer because of hectic schedules, travelling, health issues, and needed repairs, but today I just got new tires on it and took it for my first out-of-town ride, which was amazing. I will be riding it a lot more now that I have all the repairs done and got my riding boots fixed, and I'm pretty excited about that as well. For an adrenaline junkie like me, it doesn't get much better than riding motorcycles and playing roller derby.<br />
<br />
So between my developing relationship with the man of my dreams, my new-found control over my body, my fulfilling workouts, my travel adventures, my motorcycle riding, and my roller derby plans, I really feel like I am living life to the fullest. The point I want to get across today is how enriching of a life you can lead with a j-pouch. Of course J isn't perfect - I still go to the bathroom more often than I'd like, and I still have to avoid chili powder or I get butt burn from hell - but as you can see, it's not holding me back from enjoying life one bit, and I'm back to grabbing life by the horns.<br />
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<b><i><span style="color: #990000;"><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2013/07/reconciliation.html">Previous Post</a> </span></span></span></i></b><b><i><span style="color: #990000;"> <span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2013/09/j-on-wheels.html">Next Post</a> </span></span></span></i></b></div>
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<span style="background-color: #eeeeee; font-size: x-small;"> <b>Anastamosis </b>- Surgically attaching two parts together through either hand-sewn or stapling techniques. </span><span style="background-color: #eeeeee;"><span style="font-size: x-small;"><br /></span></span><br />
<br />
"Some days I question my decision- then I remember that I'd probably be underground had I not made this one..." -Allison Siddle <a href="https://www.facebook.com/groups/2398782014/" target="_blank">(No Colon and Still Rollin' Facebook Group)</a><br />
<br />
I was originally going to write this week about pouchitis, j-pouch tips, and working out with a j-pouch, but yesterday another topic jumped out and waylaid me seemingly out of the blue. So here it goes...<br />
<br />
I've tried really hard to maintain a positive, optimistic outlook throughout everything I have been through, and it has helped me to really take all the obstacles I've had to face in stride. Plus, it's been like some big journey, the destination of which, or the "prize" at the end, is supposedly a well-functioning digestive system, which is the dream that we are all aspiring to. So here I am, seven months out from takedown, and shit's starting to get real. The "honeymoon" phase has worn off, and I'm learning what my new baseline looks like. What life with a j-pouch really means, day in and day out. The bottom line is that I'm tired of feeling that any part of my life is still dictated by my gut. It's been eighteen years, the last three of which have been particularly trying, and I just feel like things should be easier by now.<br />
<br />
Somewhere along the line, I started anthropomorphising my j-pouch by referring to it as "he" and what "J" likes or doesn't like. So one of the most difficult things for me to reconcile when it comes to j-pouch life is that while one of my big fitness goals has been about getting cut, the healthy diet that it would take to accomplish that goal (whole grains, lots of veggies, low-carb, low-fat, high-fiber, etc.) is the exact opposite of what J likes, which means the diet that J likes (carbs, fats, no veggies, low-fiber) is pretty unhealthy. <br />
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<blockquote class="tr_bq">
<b><i>For those of you wondering about what a j-pouch-friendly diet looks like seven months out, here is the rundown...</i></b><br />
<i><br /></i>
<i><b>Foods I totally avoid:</b> dark chocolate, whey protein, peppers or anything spicy. (These foods will have me living in a world of regret for a good 6+ hours if I have even a small amount. The dark chocolate and whey will greatly increase frequency, and spicy foods will cause hellish butt burn.)</i><br />
<i><br /></i>
<i><b>Foods I eat in very small amounts: </b>nuts, seeds, raw veggies, whole grains. (These foods will cause increased frequency if I have more than a few bites.)</i><br />
<i><br /></i>
<i><b>Foods I eat in moderation:</b> milk chocolate, cooked veggies, beans. (These foods are okay as long as I don't go overboard.)</i><br />
<i><br /></i>
<i><b>Foods I'm surprised I don't have to moderate:</b> popcorn, carbonated beverages, alcohol, sugar, caffeine, fried foods, soy, casein protein. (These foods don't seem to affect me much at all.)</i><br />
<i><br /></i>
<i><b>Foods that seem to keep J happy:</b> bananas, rice, creamy peanut butter, potatoes, cheese, marshmallows, pretzels, toast/bread, yogurt. (These foods can lower water content, slow down digestion, and reduce bathroom trips.)</i></blockquote>
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This makes it practically impossible to eat in a way that would be most beneficial for dropping fat, unless I want to spend all day in the bathroom. I've been waiting for my j-pouch to mature enough to handle a super healthy diet, but every time I try to eat a diet based mostly on lean protein and veggies, J revolts. I had been trying (again) to make this diet work for the last couple of weeks, and I ended up nothing but frustrated, disappointed, and depressed as I dealt with increased frequency, difficulty emptying, and almost constant anal pressure, which made it very difficult to motivate myself to work out. In fact, what I was experiencing much resembled the symptoms of a stricture at the anastamosis site between the j-pouch and anal canal. (More on this later.) Turns out everything's fine up there - I just need to adjust my eating habits. But dealing with these symptoms for enough hours, days, weeks in a row can really wear on a person.... And it was yesterday morning that the frustration from living like this collided with my frustration from my obvious lack of progress with my cutting goals (i.e. no loss of pounds, inches, or body fat percentage) and the fallout from that collision caused a minor meltdown. <br />
<br />
After a good cry and processing of these emotions, the realization that I came to yesterday is that if I set my dietary and fitness goals around something that my specific health situation will constantly be getting in the way of, I will continue to be nothing but frustrated and disappointed as the two opposing agendas wage war in my gut. Although I would still love to see myself cut, I cannot eat a diet that causes such gastric distress and expect good results. (I've eaten no veggies for the last couple days, and all those annoying symptoms have disappeared.) It was a pretty difficult conclusion to come to, but I figure that the only way to see real progress towards my goals and feel successful is to change my goals. So at this point I am attempting to change my perspective. Instead of focusing on dropping body fat, which is primarily accomplished through diet, my goals need to be less about how much I weigh and what I look like and more about about what I can do and accomplish. Originally I was pretty upset over this since it seemed like my fitness goals were such a big part of my identity, but I need to keep reminding myself that I can still be athletic without such a huge focus on cutting. In all honesty, this is probably a much healthier psychological outlook anyway. My fitness plan now will now incorporate whatever makes me feel good and healthy, not what will make me look the way I want, and I will measure my progress by how much I can lift, how far I can run, how many laps I can swim, and how fast I can recover. This change is one that will still take time to reconcile, especially since I can get quite determined and competitive when I set my mind to something, but I think it's a direction in which I will be able to find much greater success.<br />
<br />
When I explained this all to my manfriend in the midst of my cry episode, he mentioned that it sounded like I was still grieving. Once I thought about it, I realized he was right. The day before yesterday I broke down and cried at the gym when it hit me out of the blue (again) that I will never have a normally-functioning digestive system in my life. Ever. This is something I can never go back from. I've mostly taken everything in stride, but when it hits me like that out of nowhere, it's kind of hard to wrap my brain around. Right now as things finish settling in, it's going to be all about learning (and accepting) what my new normal looks like. Of course there will be some successes and some losses that I will have to celebrate and grieve for as I go. However, I still have many things to be thankful for, and most importantly, I'm still alive. Although I may be fighting in a slightly different direction now, I'm still fighting for it. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTl6JtGCRFDW5rBhmKZV3mQDaPyNnBB9UZXsUA32z8SOKzf9N2_wP0Z8gGR_tq20Imxp3xfQz96znzvi9jdoPo76nGWhEX2cU6NL_jwyOOkjdxW3WDVa9warh_u86KpzbGxAa3sthPazOt/s1600/happy+tummy.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="199" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTl6JtGCRFDW5rBhmKZV3mQDaPyNnBB9UZXsUA32z8SOKzf9N2_wP0Z8gGR_tq20Imxp3xfQz96znzvi9jdoPo76nGWhEX2cU6NL_jwyOOkjdxW3WDVa9warh_u86KpzbGxAa3sthPazOt/s320/happy+tummy.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;"><b>I finally get to change my tummy pick from sad to happy!<br />(Ipod Shuffle still attached from today's run.)</b></span></i></td></tr>
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First off, I have to apologize to my loyal readers that it has been over two months since I've updated my blog. I have been meaning to publish another post about life with a j-pouch for over a month now, but I honestly have been too busy enjoying life! I have so many exciting things to share with all of you about what I've been up to since my last post that I'm having a hard time trying to figure out what to talk about first!<target self=""></target><br />
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As some of you already know by now, doctors and experienced j-pouchers will tell you to hold any complaints or freak-out moments regarding results of the surgery until after the five-month mark. The reason is that a brand new j-pouch has to go through an adaptation period. During this time the j-pouch has to learn its new function, which involves a couple of changes. First of all, since the j-pouch is made from small intestine, who's normal job is to push food through constantly, the j-pouch has to learn that it is the new end point and that it does NOT need to push food through but rather store waste. Secondly, the small intestine learns to absorb more water in order to pick up the slack of the missing colon. Thirdly, the j-pouch will grow and expand to fit the needs of its new function. And finally, it needs to finish healing and re-establish a healthy balance of intestinal flora (healthy bacteria that helps to break down food). Much of this change happens within the first five months or so, but the j-pouch can continue to adapt and settle in for up to a year or more. Right now I am about four and a half months out from my takedown, and here is how I am doing on all the main points that future j-pouchers seem to be curious about.</div>
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<div>
<b>Bowel Schedule & Sleep:</b></div>
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<br /></div>
<div>
Since my last post, my BM's have become more predictable. I go probably about five times per day, slightly more if I eat something my j-pouch isn't crazy about, so it typically stays between five and seven. My biggest complaint about j-pouch life used to be that I woke up one to three times a night to use the bathroom, which disrupts my sleep cycle. (And when I get up to go, it's not like I can just stumble to the john with the light off, pee, and go back to bed. Getting fully clean after a j-pouch evacuation requires light and attention, which means I have to wake all the way up, after which it is sometimes difficult to fall back asleep.) For a few months these nighttime BM's were on a pretty regular schedule: once between 1:00 AM and 2:00 AM and again between 4:00 AM and 5:00 AM, sometimes more if my j-pouch was feeling unruly. This meant that I never felt quite rested; I couldn't sleep in, and I worried that I would never get a solid night of sleep again. However, I am proud to announce that over the last couple of weeks that schedule has been slowly stretching out until the last three nights I have actually slept through the night without waking up! This seems to be my new schedule, now: getting a solid night's sleep. Wooo-hooo!!! For those of you who don't know me, this is a HUGE win for me. I am SO excited about this sleep thing.</div>
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<b>Diet:</b></div>
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I mostly eat whatever I want without having to worry much about what will happen to my gut. However, there are a few things I have to make sure I eat in moderation, or I may end up with extra bathroom trips that night. I still don't eat too much fiber, but I am very slowly bringing it back in. I have noticed I can eat cooked veggies without much trouble (soups, stir-frys, etc.) and I can eat small amounts of raw veggies, like the amount that would be on a burger or a small side-salad. (I did try a large salad right after my last post, and my j-pouch didn't like it, so I went back to avoiding raw veggies for a while.) My goal is to be able to eat full salads by summer. I can have small amounts of nuts or seeds as long as I don't overdo it (a handful of nuts, but not two). I was previously avoiding chocolate since it stimulates the bowel, but I have found just within the last week that my j-pouch now tolerates small amounts of chocolate just fine. In the past, I have used Imodium before drinking alcohol, but the last time I went out I did not take any, and I had three rum drinks with no ill effects and maybe only one extra bathroom trip that evening. (I did notice, however, that I got pretty buzzed off those three drinks, letting me know that it was the Imodium that was giving me the sky-high alcohol tolerance I described in my last post.) Other than that, I have no limitations on what I eat. I am hoping that the few foods I still moderate will become more tolerable over time until eventually I am eating whatever I want whenever I want.</div>
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<b>Work:</b></div>
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I returned to work full time on February 19th, which was just over two months after my takedown. (I would have been able to go back sooner if I hadn't had so many complications after my second surgery.) Although I enjoyed being back at work and interacting with students, I have to admit that it was quite exhausting at first. Before my surgery, I was incredibly ill with UC, and as soon as I healed from surgery one I was back in for surgery two. So with everything combined, there were about five months during which I spent the majority of my time in bed. This alone, I believe, contributed hugely to my exhaustion in coming back to work. Teaching is an exhausting job to begin with, and the first couple weeks back from summer break (which is two months long) are usually tiring, so coming back from this was even worse. However, I slowly built up my strength and endurance, and now I'm teaching energetically all day, just like I was back in my healthy days before all this happened. I have no bathroom issues while at work. If I do ever feel the need to go, I can hold it as long as I need to until it's convenient. I am usually at work from around 8:30 AM until about 4:00 PM, and I usually go once during that time, either at lunch or right after school is out.</div>
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<b>Exercise:</b></div>
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Because it took a while to recover from my complications, and then it took a while to adjust to being active and back at work full time, it took me much longer to get back into exercise than I had hoped. However, a few weeks ago I did start adding some workouts after work, and now I am working out four to five days a week. I am running two to three times a week, though not very fast or very far (under 2 miles) since I'm dealing with shin splints and feeling that old ankle sprain acting up, but I have learned to start my running practice very slowly before building up and adding mileage. Consistency and perseverance are what will get me there. I'm also doing strength-training two or three times a week. I'm still working on building a foundation all around since I've been out of the game for so long, but I am excited to be back in it full-swing and love feeling that endorphin rush from pushing my body to its limits. My body seems to be responding pretty quickly now that I'm off all those awful drugs (prednisone, immunosuppressants, etc). Sometimes the gravity of the bouncing (during a run, for example) or the flexing and exertion of weight-lifting can cause me to feel like I have to go, but again, I can always hold it until the end of my workout, even when I'm working out in my home gym. I also plan to resume my yoga classes, roller derby sessions, and dance classes in the near future.</div>
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<b>Dating and Sex:</b></div>
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Another exciting thing that has happened since my surgery includes advances in my love life. Once I was off of all drugs and free of post-op complications, I started looking into dating again. Coincidentally, the first man I went on a date with turned out to be totally amazing, a person I see as my perfect match after so many years of searching for the right one. We have become quite serious very quickly, and I'm loving every minute of it. A lot of people (females especially) want to know about sex after j-pouch surgery. Well, my sex life is amazing, too. I can assure you that even with a very wild and kinky sex life, everything functions just as it should in every position imaginable. In the beginning, I would occasionally feel the need to go a few minutes after finishing intercourse, but never during... and I haven't even noticed that happening for quite a while now. And no, I have NEVER experienced any leaks during exercise or sex.</div>
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<b>Other Fun Stuff:</b></div>
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<b></b><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjgq6uLZvKuuUObe1mG-nJUGhOoNTXYpaAQXY0Qj7JuFGlks_mogCYhtRC4VxJnQKJx_C8E9bCNbYfRu3W1Watr277zjEye_Ksvue-ookFWSx5FF1j6s2gX7qv1fjwCwKUWg0Gojg92kO/s1600/Bike.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjgq6uLZvKuuUObe1mG-nJUGhOoNTXYpaAQXY0Qj7JuFGlks_mogCYhtRC4VxJnQKJx_C8E9bCNbYfRu3W1Watr277zjEye_Ksvue-ookFWSx5FF1j6s2gX7qv1fjwCwKUWg0Gojg92kO/s320/Bike.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><b><i>My new baby: a V-Star 650 Classic. :-)</i></b></span></td></tr>
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I have also been going out to social events, eating at any restaurant without hesitation, travelling short distances to visit family members, and basically living my life to the fullest. I took a motorcycle riding class over spring break and bought a new motorcycle the next day. It's something I've wanted to do for many years, and now I can. I've been learning to ride and LOVING it. I've been riding to work for a couple of weeks now, and I'm just about ready to start taking it out of town. My new man-friend and I have also been planning vacations: backpacking trips, cruises, etc. I have no doubt that this summer will be packed with fun excursions and adventures.</div>
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<b>Healing Scars:</b></div>
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These pics were taken April 8, 2013, two and a half weeks ago, which was just over six months after my first surgery and exactly four months after my takedown. Feel free to click on the image for a larger view.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcROtgfWsjxun0YOLg0fBhvYn9BwGvy3hE39_Aplh0KcCFqAITbXpzwbSV77vjPk-26R-qRGILeZMeJF0PR1cEJJL5KHb_ddyFQF5fDJLr-J7ojmmV7D1P5D0Q38EusaIvdUEdQnGY9L_u/s1600/Healing+Scars.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcROtgfWsjxun0YOLg0fBhvYn9BwGvy3hE39_Aplh0KcCFqAITbXpzwbSV77vjPk-26R-qRGILeZMeJF0PR1cEJJL5KHb_ddyFQF5fDJLr-J7ojmmV7D1P5D0Q38EusaIvdUEdQnGY9L_u/s320/Healing+Scars.jpg" width="320" /></a></div>
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This is a shot of all five scars. Some of them are barely visible, especially in photographs. Scars 1-3 are from the laproscopic incisions from surgery one. Scar 4 is where my stoma used to be and was closed at my takedown, and scar 5 is the longer incision where they created the j-pouch during surgery one. Below are close-up shots of each.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnwJ8anP_x1R9vNEQhdaWASHk6dIQB2vFuojWg8UbuvqGW2jBMjkkGuzJh2W_dGgPoquIKCPZILqCH5xVFOHEtt7jm-31WsluCum25-Y-WHuEKOz9p9xS87I9WMhLij6EQT66nlsTEPOr0/s1600/1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnwJ8anP_x1R9vNEQhdaWASHk6dIQB2vFuojWg8UbuvqGW2jBMjkkGuzJh2W_dGgPoquIKCPZILqCH5xVFOHEtt7jm-31WsluCum25-Y-WHuEKOz9p9xS87I9WMhLij6EQT66nlsTEPOr0/s320/1.jpg" width="320" /></a><b></b><br />
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<b>Incision one</b> is towards the center of this photograph, barely visible. The dark spot you see to the bottom left is where they inserted the drain in my side during my hospital stay due to the complications of my second surgery. This would not have been there under normal circumstances.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpUk93J9CubPQrQc36xeah9LCuE0gAYz9HnEgeKt9aCq4NnMobAp5uXr6-R1RlHTEIDhe2pmeW5Lb3Xlh31UdVoexCTp2FyhyZXc7UbK6GV5VMJWujcXlnt6fH1cYDLNRMS5s-5UyiCxfQ/s1600/2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpUk93J9CubPQrQc36xeah9LCuE0gAYz9HnEgeKt9aCq4NnMobAp5uXr6-R1RlHTEIDhe2pmeW5Lb3Xlh31UdVoexCTp2FyhyZXc7UbK6GV5VMJWujcXlnt6fH1cYDLNRMS5s-5UyiCxfQ/s320/2.jpg" width="320" /></a></div>
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<b>Incision two</b> is inside my belly-button. You cannot see it in the photo or in real life, even if you stretch and peer inside, LOL. What you do see here above my navel is the scar from where I used to have my belly-button pierced many years ago.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuK2UB86Dvh6lMs7AKCzY1NoxLLtztdVqUDbHeACrm2VTeFnku8rT2o4JrVczlfN_q69EbgXoqSG351usQwlrf3l0W4L4ZFA8sFmIH32DrPVp9Hz8CHsQt-Zbtl7738ldwZQclHCn8LEBt/s1600/3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuK2UB86Dvh6lMs7AKCzY1NoxLLtztdVqUDbHeACrm2VTeFnku8rT2o4JrVczlfN_q69EbgXoqSG351usQwlrf3l0W4L4ZFA8sFmIH32DrPVp9Hz8CHsQt-Zbtl7738ldwZQclHCn8LEBt/s320/3.jpg" width="320" /></a></div>
<b>Incision three</b> is towards the center or bottom left of the photograph. This was originally a laproscopic incision, but it is more visible than the other lap scars since it was also the site where my JP drainage tube was left in for eleven days after my first surgery. The dark spot you see in the upper right is where they had a drain inserted in the hospital due to complications from my second surgery. Again, that would not be there under normal conditions.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpmw9iL9j7gM34bPx2a3RAJkOwn_xQw37A_SxiQmlPG0XVx9ee2rE1BVzdansDrEATOP5HosZdETffvWT9htNxGC2I0EapkVeu2X8ceSjQ3_WhzseF1Cwu8r_STSdZoiQGAjpLCqvGIjTv/s1600/4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpmw9iL9j7gM34bPx2a3RAJkOwn_xQw37A_SxiQmlPG0XVx9ee2rE1BVzdansDrEATOP5HosZdETffvWT9htNxGC2I0EapkVeu2X8ceSjQ3_WhzseF1Cwu8r_STSdZoiQGAjpLCqvGIjTv/s320/4.jpg" width="320" /></a></div>
<b>Incision three </b>used to be named Stella (my stoma). This is where my ileostomy was for ten weeks between the two surgeries. This is the only incision they used during surgery two... They just stitched the small intestine back together, poked it back in my abdomen, and closed me up. The resulting scar is about two inches long. The blob you see in the middle is because a piece of the end stitch from inside where they sewed my ab muscles closed was poking through the skin incision during the healing process. (It was all covered with bandages in the hospital, so I didn't realize it until it was too late.) It healed that way, and eventually the inner stitch slowly dissolved over time, leaving this darker spot in the center of my scar. If the stitch had been left inside and under my skin as it should have, this scar would look more like a straight line.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs5Yj1XalEpQLEu8yYfkmtbaM1nBd_TEDQvWM4ZIfsAwjNE16_hsosvcl9lFxtkVB-6zQ42CUH6GTFk8_YB3zuZ0bQqcgZSlchrgC8AvAO-FPazosJaFGCZ05icEkcUGVz7bS5fBMqVcRW/s1600/5.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs5Yj1XalEpQLEu8yYfkmtbaM1nBd_TEDQvWM4ZIfsAwjNE16_hsosvcl9lFxtkVB-6zQ42CUH6GTFk8_YB3zuZ0bQqcgZSlchrgC8AvAO-FPazosJaFGCZ05icEkcUGVz7bS5fBMqVcRW/s320/5.jpg" width="320" /></a></div>
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<b>Incision five</b> looks somewhat like a c-section scar. This is where they opened me up to create the j-pouch during surgery one. It is three inches long. It healed up beautifully and is barely visible now, as you can tell from the photograph.</div>
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<b>In Conclusion...</b></div>
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So here I am, about six months after my first surgery, back to living a fuller life than I ever had since my UC diagnosis turned severe. I am a very happy j-poucher and haven't regretted my decision for a single second. I am very optimistic about my future and would be happy with the way things are now, but I know they will continue to slowly improve even more over the next few months. I will probably start writing less and less now that I'm getting busy with loving life again, but I will try to check back in every couple months or so. The next time you hear from me will probably be during summer break. Until then.... keep on fighting the good fight! :-)</div>
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<b><i><span style="color: #990000; font-family: "times" , "times new roman" , serif;">Feel free to leave reactions and comments below...</span></i></b></div>
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<b><i><span style="color: #990000;"><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2013/02/back-to-life.html">Previous Post</a> </span></span></span></i></b><b><i><span style="color: #990000;"> <span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2013/07/reconciliation.html">Next Post</a> </span></span></span></i></b><br />
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</script></div>Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.com2tag:blogger.com,1999:blog-2879466065973431818.post-45289925806285560692013-02-17T21:41:00.001-08:002016-10-04T16:47:55.626-07:00Back to Life<i style="background-color: #eeeeee;"><span style="font-size: x-small;"><b> BRAT diet = </b>Bananas, rice, applesauce, toast. Refers to a diet of these specific slowing foods but can also include bread, pasta, and other white carbs or bulking foods known to slow the bowel. </span></i><br />
<span style="font-size: x-small;"><i style="background-color: #eeeeee;"><b> C. diff = </b>Clostridium difficile. A type of intestinal bacteria, an overgrowth of which can cause severe diarrhea. </i></span><br />
<span style="font-size: x-small;"><i style="background-color: #eeeeee;"><b> Butt Burn</b> = The pain and intense burning sensation of the skin around the anus from the irritation that is caused by the high levels of digestive fluids in the frequent bowel movements after j-pouch surgery . </i></span><br />
<span style="font-size: x-small;"><i style="background-color: #eeeeee;"><b> Pouchitis</b> - Inflammation of the j-pouch, usually due to an overgrowth of bacteria and easily treatable with a round of antibiotics. </i></span><br />
<span style="font-size: x-small;"><i style="background-color: #eeeeee;"><b> UC = </b>Ulcerative colitis, a disease of the large intestine that causes inflammation and tiny bleeding ulcers that cover the intestinal wall.</i></span><br />
<br />
Well, I was not successful with my goals from a month ago. In the days following my last post, I discovered how truly unpredictable this recovery process is. Occasionally I would have a good day, but more often than not, I would spend most of the day in bed either due to withdrawal symptoms from the prednisone and Norco (lethargy, fever, chills, intense headache) or my j-pouch acting up with urgency, diarrhea, pressure... I found it impossible to make plans - fitness, social, or otherwise - because there was no telling how I was going to feel from day to day, hour to hour.<br />
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I had been waiting to be done with antibiotics because I heard that they can sometimes cause diarrhea. So I thought that my j-pouch function would improve when I came off of them. Unfortunately, it was the opposite. As soon as I stopped the antibiotics, I had uncontrollable diarrhea regardless of what food I ate or what drugs I took. Before this point, I could somewhat predict or control my j-pouch based on whether I had any foods that cause urgency (chocolate, alcohol, caffeine), or when I took my Norco, since narcotics act as a bowel-slower. But no matter how much BRAT food I ate or how recently I took the narcotic, I was running to the bathroom with pure liquid BM's. I had way less control than I did before, and this was the only occasion that caused a bit of anal leakage since my surgery. In addition, the frequency and consistency of my BM's brought with them some of the worst butt burn I've experienced yet. During this time, I was going about 10-12 times a day, running to the restroom instead of being able to hold it until it's convenient. I read that the most common cause of antibiotic-related diarrhea is C diff (an intestinal bacteria), and I also know that these can be symptoms of pouchitis (bacterial infection of the pouch). So when it lasted longer than a couple days, I called my nurse at UCSF.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0jHZ2vpZ6PE14YoRo4v19h1ydRJgzFjSx5vR2Nu6YguhhQsW6L2bCXT9MOW-2nIFL4qtNJXBYYeff6CE-sfKLKBb8hCMk_uU3K9MIzGuEbc180pHxfXDWO5MKvhWN8IjoaPG19M2rGcBY/s1600/Slowers.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0jHZ2vpZ6PE14YoRo4v19h1ydRJgzFjSx5vR2Nu6YguhhQsW6L2bCXT9MOW-2nIFL4qtNJXBYYeff6CE-sfKLKBb8hCMk_uU3K9MIzGuEbc180pHxfXDWO5MKvhWN8IjoaPG19M2rGcBY/s320/Slowers.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><i><span style="font-size: x-small;">Prescription narcotics and Imodium (Loperamide) both help<br />to slow the bowel and reduce number of bowel movements.</span></i></b></td></tr>
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According to her, this j-pouch behavior is perfectly normal when coming off of antibiotics. She ordered a C diff test for me anyway just to reassure me (which came out negative), but she told me not to worry since this is all still within the normal range of j-pouch adjustment and adaptation. Another friend with UC told me that the same thing happened to him when he came off antibiotics, and the effects lasted a couple weeks. So I just put up with it, hoping things would improve soon. What helped is if I took my Norco along with two Imodium as soon as I woke up. Then within an hour things would slow down a bit - enough for me to feel a little more comfortable laying around but not enough for me to feel confidnet leaving the house. Sometimes I would take another one in the afternoon if things were bad, and then I would take the same doses before bed. Going through this process was a bit of a pain, but true to form, these symptoms died off in just under two weeks. I had also started taking probiotics a couple days before things improved, so that probably also played a role in getting my j-pouch to behave again.<br />
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On another note, I had an appointment with the urologist in regards to the lesion on my kidney and found out there is an 80% chance that it is cancer, so during the whole appointment, the doctor spoke and planned as if it was cancerous. However, the tumor is still very small and non-aggressive, so there is very little relative risk, especially now that we know it is there. Since radiation and chemo do not reach the kidneys, I won't be doing any of that unless it was to spread to other parts of my body, which is highly unlikely (less than 5% chance with how small it is). So there are three main treatment options: 1) open surgery to remove that part of my kidney, which would leave a big deformed scar on my side, 2) laproscopic surgery, which would normally be the most ideal route, or 3) a long needle through my back to freeze and kill the tumor. Because of my previous surgeries and infections, he would not feel confident performing lapro surgery on me with all the scar tissue and adhesions I probably have going on. So he is recommending freezing it with the needle. This method is 5% less effective than surgery, but if it doesn't work, we can always try it again or opt for open surgery later. Either way, we decided it would be a good idea to make sure my body is fully recovered before treating the cancer, so summer break sounds like a good time to start treatment. It seems a bit counterintuitive to know I probably have cancer and just sit on it for several months, but the doctor does not seem at all worried. He said it's perfectly reasonable to wait 3-6 months. The doctor did agree, though, that because this type of cancer has no symptoms, if we never found it on the CT scan like we did, then we would have never known it was there until it was way too late... so I'm still considering myself a lucky lady.<br />
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Overall, though, I have been doing well. The last week or so things have been returning to normal. My latest blood panel (CBC) came back normal, and this is the first time that I don't have some sort of complication (incision, blockage, infection, withdrawals, j-pouch adjustment symptoms, etc.) bringing me down. I do have another ultrasound next week to make sure the inflammation in my uterus is gone, but the last few days are the most normal I've felt in a very long time. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRiDWd_iLuZNss9uoTfk855xwWViSE81Y_0IgNc3eMpRnMRqmfPq3qdVD3HInZsdTIBzum7AibCKb9CUS0YMCPNH-pb0S8g8FN7_g660oWrSB3ISml4k-ZamB8qoyM5FeM3zS7r4B0ujKM/s1600/Salad.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRiDWd_iLuZNss9uoTfk855xwWViSE81Y_0IgNc3eMpRnMRqmfPq3qdVD3HInZsdTIBzum7AibCKb9CUS0YMCPNH-pb0S8g8FN7_g660oWrSB3ISml4k-ZamB8qoyM5FeM3zS7r4B0ujKM/s320/Salad.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><i><span style="font-size: x-small;">Today's lunch: adding fiber back into the diet.</span></i></b></td></tr>
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Currently I am not taking any bowel slowers on an average day, and I am even adding a lot more fiber to my diet: whole grain bread and small salads with dinner, soon to be increased to full salad meals (starting today). My frequency is an average of about four times a day (in 24-hrs) if I'm behaving myself, or seven times a day if I eat something like chocolate or alcohol, and I am back to having total control - no leaks, no urgency. This is all perfectly normal and acceptable to me. In fact, last night I went out to the bar with my roomie and had five or six rum drinks, taking two Imodium around the time I started drinking, and suffered zero ill effects in the morning. No increased frequency and no hangover. One thing I did notice, though, is that the rum didn't affect me as much as I thought it would. Since I haven't been drinking hardly at all in the last five months, I figured my tolerance would be pretty low. I don't know if my tolerance just never dropped, if the meds affected it, or if the way I absorb and process alcohol has changed since I lost my colon, but I was just a little buzzed off of those six drinks - not tipsy, not drunk, just buzzed. This is not a problem or anything, just an observation. I had a good time either way and am happy I was able to go out and enjoy myself without suffering for it the next day.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipQT4EH9-MwGjyN9T8rmEZ299buZG83pZwcy0mt2W2IY1g9dQioQ-sPph3B5wCRFgYuQGQuNvHw-GlW8Em_wEF6qki6h6AeVaLj4Alo7dy7DvBArDGnqPmm_6FimzGSdeSl8D-wX6H4N2x/s1600/Ointment.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipQT4EH9-MwGjyN9T8rmEZ299buZG83pZwcy0mt2W2IY1g9dQioQ-sPph3B5wCRFgYuQGQuNvHw-GlW8Em_wEF6qki6h6AeVaLj4Alo7dy7DvBArDGnqPmm_6FimzGSdeSl8D-wX6H4N2x/s200/Ointment.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><i><span style="font-size: x-small;">Baby wipes and ointments can <br />also help treat butt burn.</span></i></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7hNhEaDmDeyGyvVfpiGbpCOdboaKyDldjAKToQGR3D91xsZFACu8c4cHHpVLw0mQcuB4BPX0mc2l2L7QoUyBYhE57rJcXoYx0FTml6nRR7Ac8GpdUKef8NGQD8W_eidXkLR14iEI_FgM5/s1600/Bidet.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7hNhEaDmDeyGyvVfpiGbpCOdboaKyDldjAKToQGR3D91xsZFACu8c4cHHpVLw0mQcuB4BPX0mc2l2L7QoUyBYhE57rJcXoYx0FTml6nRR7Ac8GpdUKef8NGQD8W_eidXkLR14iEI_FgM5/s200/Bidet.jpg" width="112" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><i><span style="font-size: x-small;">The COCO 9500R bidet:<br />cleaning with a spray of<br />water after you go can<br />help treat butt burn.</span></i></b></td></tr>
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Just as a side note, at home I have been alternating between using the bidet (a top-of-the-line COCO bidet with a remote control), baby wipes, or regular TP depending on how my butt feels, as well as rotating between A& D ointment, Aquaphor, or using no ointment at all. I also always make sure if I leave the house that I have a mini-ziplock of baby wipes and a mini chapstick-sized tube of Aquaphor in my purse. These come in very handy, as public restroom TP tends to be pretty thin and rough.<br />
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Anyway, I am so happy to be feeling back to normal, and I think I'm about ready to get back to my life. I start back to work on Tuesday, and I'm confident that I'll be able to handle it just fine. I'm also ready to start working out again and plan to add that in daily after work. I have been waiting for this day for so long... Time to start living, time to spark up that fighter spirit again, and I'm so excited. <br />
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P.S. - Here is the latest pic of my healing scars. (Click on the photo for an enlarged view.) I didn't bother trying to get a pic of the laproscopic ones since they are almost invisible now. In a month or two down the road I will do another post all about the healing incisions and will get a close-up of all five scars for ya. But so far you can see how much the lower one has faded; I expect the stoma scar above it to do the same in a few weeks.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCS6M1x47pAMHMGmsAPHRs08Lln5WG5A2zzPXx2XW9XYJXXeqaB_J4QLj6lp5VegkaiypVthm1wdZS1FNznuE9L67lYdON5wYybVYlIlMjYGEaYh_PI1lloIgiprE7oC14theLb0b18El_/s1600/incisions+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="147" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCS6M1x47pAMHMGmsAPHRs08Lln5WG5A2zzPXx2XW9XYJXXeqaB_J4QLj6lp5VegkaiypVthm1wdZS1FNznuE9L67lYdON5wYybVYlIlMjYGEaYh_PI1lloIgiprE7oC14theLb0b18El_/s320/incisions+2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><i><span style="font-size: x-small;">Healing Incisions: 2/17/13. The three-inch scar along the panty-line is from <br />surgery number one (10/4/12 - just over four months out), and the two-inch stoma scar above it is<br /> from surgery two (12/11/12 - just over two months out). The lower one is normally covered <br />by my underwear, and the higher one is normally barely below my pants-line.</span></i></b></td></tr>
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<b><i><span style="color: #990000; font-family: "times" , "times new roman" , serif;">Feel free to leave reactions and comments below...</span></i></b></div>
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<b><i><span style="color: #990000;"><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2013/01/transition.html">Previous Post</a> </span></span></span></i></b><b><i><span style="color: #990000;"> <span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="background-color: #eeeeee;"> <a href="http://ronnilee-fightingforit.blogspot.com/2013/04/the-adaptation-period.html">Next Post</a> </span></span></span></i></b><br />
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</script></div>Ronni Leehttp://www.blogger.com/profile/10582495010765010031noreply@blogger.com6tag:blogger.com,1999:blog-2879466065973431818.post-413781082914206132013-01-19T21:03:00.003-08:002016-10-04T16:47:15.285-07:00Transition<span style="font-size: x-small;"><span style="background-color: #eeeeee;"><i> <b>anastamosis </b>= surgically attaching two parts together through either hand-sewn or stapling techniques </i></span><target self="self"></target></span><br />
<span style="font-size: x-small;"><i><span style="background-color: #eeeeee;"> </span><b style="background-color: #eeeeee;">butt burn</b><span style="background-color: #eeeeee;"> = the pain and intense burning sensation </span></i><i style="background-color: #eeeeee;">of the skin around the anus</i><i><span style="background-color: #eeeeee;"> </span></i><i><span style="background-color: #eeeeee;">from the irritation </span></i><i><span style="background-color: #eeeeee;">that is caused by the high levels of digestive fluids in the frequent bowel movements after j-pouch surgery </span></i></span><br />
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"If anything can go wrong, it will go wrong." - Murphy's Law</div>
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I'd like to say that when I got home from the hospital, everything finally started going smoothly, and I hit the ground running. The truth is, though, that I've still been experiencing more complications. But we'll get to that in a minute. First, a little celebration.</div>
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As soon as my parents drove me home, even though it was January 5th, we celebrated Christmas: I made some hot cocoa and Mom put on some Christmas music while I opened my stocking and all the presents sent to me from from family. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizhUuiz2xp-3hKJo4kh2_2UaAKAn4Gdun-gLOTw7IdkmyA1PNfo2iH6LIOjlAYajypfJv3n8ur_ecymUUSNQUZ-Yn47nVMJ90IvcreH3k81u_YU0yO_vAMXH_TsnIAk5GAOmTXR6BY4cuf/s1600/Christmas.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizhUuiz2xp-3hKJo4kh2_2UaAKAn4Gdun-gLOTw7IdkmyA1PNfo2iH6LIOjlAYajypfJv3n8ur_ecymUUSNQUZ-Yn47nVMJ90IvcreH3k81u_YU0yO_vAMXH_TsnIAk5GAOmTXR6BY4cuf/s320/Christmas.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b style="font-size: small;"><i>Who doesn't love opening Christmas presents?<br />Thanks everyone!</i></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfE8i0OoKdH-gN4b0WSIJmAxuy4SBP3Job_wkgbFlIoTKNtkqJ0FabpMstQvRyCzQjttueKHKgWK3iiQRtuVB19JtONWlbXI-D9LCRHA7ULvsHitUHO3uP_LrtyCNs-QYh4Rbt65-2dYG8/s1600/Present.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfE8i0OoKdH-gN4b0WSIJmAxuy4SBP3Job_wkgbFlIoTKNtkqJ0FabpMstQvRyCzQjttueKHKgWK3iiQRtuVB19JtONWlbXI-D9LCRHA7ULvsHitUHO3uP_LrtyCNs-QYh4Rbt65-2dYG8/s320/Present.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><b><i>A poster for my classroom.... Hehe. Appropriate, no?</i></b></span><br />
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When "Christmas" was over, I took a long-overdue and much-needed shower. (I hadn't been able to take a full shower since my surgery due to bandages, drains, and PICC line, so this was a luxury.) Once I was nice and clean, my parents treated me to a belated birthday lunch (my birthday passed while I was in the hospital) where I ate a meal of carbs and fried foods, which my j-pouch handled just fine. Then, after stopping by the pharmacy, we went grocery shopping to stock my kitchen full of pouch-friendly food before my parents had to hit the road and head home.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6j4WmdXUKoz0TFuwDkQrSTz2DFUzuvgvu9m5Yp4O1SbdXjDQyqxekZcWAqsk1PrXZsqSLAismGszbCaztlhG-DR3j_0ut9SXXcP-dtyDQsiI2cw_b_dDx03uqLMAk2gjlKau86FF25sy8/s1600/Going+Out.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6j4WmdXUKoz0TFuwDkQrSTz2DFUzuvgvu9m5Yp4O1SbdXjDQyqxekZcWAqsk1PrXZsqSLAismGszbCaztlhG-DR3j_0ut9SXXcP-dtyDQsiI2cw_b_dDx03uqLMAk2gjlKau86FF25sy8/s320/Going+Out.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b style="font-size: small;"><i>All cleaned up and ready<br />for my first outing sans bag.</i></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj77fkx8JnKiKKi19S2c7ylH5NtWQJN4opiGV9VWhON1ILXy8wE5E-ExCcu9OEu6H-oj5lSHC716pjfoiFhxtSU8JAaFnPZ9Fnexy9QbxLrhiKMJvbBTDHa5500qZQhkuJTiVUZUn7IDkB2/s1600/BD+Lunch.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj77fkx8JnKiKKi19S2c7ylH5NtWQJN4opiGV9VWhON1ILXy8wE5E-ExCcu9OEu6H-oj5lSHC716pjfoiFhxtSU8JAaFnPZ9Fnexy9QbxLrhiKMJvbBTDHa5500qZQhkuJTiVUZUn7IDkB2/s320/BD+Lunch.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><b><i>Mmmm.... Comfort food. Happy birthday to me.</i></b></span></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXonn9EcskIT2AhFUoyt4ngmbon-Ave15YkW6WoSbsNXDMck8aMtvblLrubP77eH5wOr9TNgCpmXLbpqdHuR7K0fTQU7q3mpQdhyphenhyphenHyYUCfrAPH2ehZtc2vMDn2qOdFcerkQdEHHsJzjbXg/s1600/Canine.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXonn9EcskIT2AhFUoyt4ngmbon-Ave15YkW6WoSbsNXDMck8aMtvblLrubP77eH5wOr9TNgCpmXLbpqdHuR7K0fTQU7q3mpQdhyphenhyphenHyYUCfrAPH2ehZtc2vMDn2qOdFcerkQdEHHsJzjbXg/s320/Canine.jpg" width="240" /></a><br />
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It was a very fun day, but by the end of it I was exhausted. As I started adjusting to life back home, I was VERY happy to have my own bed, my own toilet, my trusty canine best friend by my side, and as many undisturbed hours of sleep as I wanted.</div>
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For the most part, my j-pouch has been behaving exactly as I would expect at this stage. Even better, actually, since I can pass gas easily in any position and have had zero anal leakage. I have complete bowel control and can hold it pretty much as long as I need, same as when I had a healthy colon. When I gorge myself on Christmas chocolate or have an alcoholic beverage, which both stimulate the digestive tract, then I will go way more often, and it feels more urgent; I will also get the sensation that I have to go even when there is little-to-nothing there, and the frequency and softer stool cause me to get the infamous butt burn, which can be pretty painful. However, if I stay away from chocolate and alcohol and make sure to include some slowing foods in my diet (bread, pasta, rice, peanut butter, cheese, banana, Metamucil wafer), then things slow way down, and the butt burn disappears pretty quickly. Regardless of what I eat, though, I'd say my frequency pretty much stays between five and ten times a day, though once it was more than that, and a couple days ago I only had three bowel movements in twenty-four hours. It's important to keep in mind, though, that almost every time I sit down to pee and relax those muscles, a little comes out of the j-pouch which means I have to count it as a BM. According to experts, the average healthy person urinates every two to four waking hours, which totals six to eight times a day. So I'm not actually going to the bathroom any more frequently than an average healthy person. I know as my j-pouch continues to mature and adapt, the frequency, pressure, and butt burn will all continue to die down over the next several months (even when I eat chocolate, LOL). I will also be interested to see how things change as I introduce more natural fiber into my diet by eating veggies and whole grains again, which will happen slowly over the next couple weeks. Overall, I'm satisfied with my pouch function at this time.</div>
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Okay, now for the additional complications. A couple days after I got home, I felt really backed up and bloated, like there was gas and food in my belly that just wouldn't pass. My tummy was uncomfortable and tender to the touch. When it didn't go away, I started purposefully doing things I knew would help clear me out: walking, heating pad, Gas-X, chocolate, and eventually even herbal laxative tea... Going to the bathroom helped a little bit with the bloated feeling, but nothing really worked. After four days of going to the bathroom and passing gas but no relief from the bloating or pain, I also noticed that the tender spot on my belly hadn't changed or moved at all, and I started to realize this wasn't just constipation. It felt like another abscess or fluid build-up, so I called my surgeon's assistant and explained everything. </div>
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They sent me in to my local medical center for a full CT work-up. I had oral, rectal, and IV contrast. (Yeah, they still call it "rectal" even though I don't have a rectum.) In addition to looking for an abscess or whatever was causing the painful bloat, they wanted to check from both the top and bottom for any leaks in my digestive tract that may be the root of the problem. Well, the CT did not show any leaks or any fluid build-up. According to the nurse that called me with the results, what the CT did show was inflammation around my Fallopian tube and uterus and a good amount of air trapped in my abdomen where it didn't belong. This could be potentially harmless or potentially very dangerous depending on the circumstances. Since it was the end of a Friday when the nurse called me with the results, and since I wasn't having any other symptoms or signs of infection, the plan was to start antibiotics right away to head off infection (one of the potentially dangerous outcomes), and to do a repeat CT in a week to see if there was any change, followed by an appointment with my surgeon. The hope was that my body might absorb the air and resolve the issue on its own. Meanwhile, if anything got worse or if I had any sign of infection, I was to go straight to the UCSF emergency room. Luckily, it never came to that.</div>
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After a little research on the topic, I figured that the air may have gotten there from the removal of the drainage tube leaving an open pathway into my abdomen since I was on steroids, which could have prevented healing. My surgeon agreed that was a possibility until she saw the scans herself. Yesterday I had my repeat CT, and after she looked at and compared both the scans, she came up with a different scenario. According to her, the air on my scan from a week ago appears to be not free-floating in my abdomen but actually inside my Fallopian tube and uterus. After scratching my head for a second, I asked her how in the world that could happen. She said that she can see the part of my intestine where she removed the stoma and stapled the ends back together (anastamosis), and it happens to be sitting right up against my Fallopian tube. She figured that from the beginning there was maybe some microscopic leak at the anastamosis site that hasn't been showing up on any of the CT scans. It's obviously not big enough at this point to leak waste into my abdomen, or we'd see evidence of that - things would be going terribly wrong right now. But a tiny microscopic leak like what she's suspecting could have been the source or cause of the infected abscess in the hospital as well as the current collection of air. Apparently, the air could have exited the intestine via the leak and then entered the Fallopian tube via the little "fingers" that are meant to catch the egg as it's released from the ovary. She said the chances of that happening are like one in two million, and she's only seen it one other time in her career, but that's what the evidence is pointing to. However, the good news is that the most recent scan shows less inflammation and a significant reduction in the amount of air. (There is one bubble in my vagina now - apparently it's working its way out, LOL.) So we're hoping it will just continue to resolve on its own. The microscopic leak should heal itself as the scar tissue grows around the staples (which could have already happened), and hopefully my body will either push out or absorb whatever air is remaining. She extended my antibiotics for another three weeks and told me to call and check in two weeks from now. If my symptoms are gone, they will assume the issue has resolved itself. If I have any worsening symptoms, or if something doesn't feel right before then, of course I'm to call in again so we can decide a different course of action.</div>
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On a pretty unrelated topic but still relevant to my health, my very first CT scan that I had to prepare for my first surgery back in October revealed a small lesion on my right kidney that I was told needed to be followed up on after my surgeries were over. So last week I scheduled a doctor's appointment for it while I was still on medical leave and before I forgot all about it. My doctor said it was most likely a harmless cyst, but she sent me for an ultrasound just to double check. Well, it wasn't a cyst. It was solid. According to my doctor this means it's most likely a benign tumor, but there is a chance that it could be cancer. It needs to be biopsied to know for sure. So she's sending my records over to a urologist in Sacramento who will either schedule an appointment for me to see him or just tell my doctor what type of biopsy procedure should be done at my local medical center. I'm thinking most likely the biopsy will involve a very large, CT-guided needle inserted into my abdomen. Great - more abdominal procedures.</div>
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When I heard the news about the tumor, I figuratively threw my hands up in the air and said to myself, "This is EFFING RIDICULOUS!" (Only I didn't say "effing".) When it comes to my health, my whole family knows that my body has always played by Murphy's Law, but there is only so much that one person can take. After remaining positive through an awful disease, immunosuppressants, major surgery, and all the unlikely complications that happened following another surgery that was supposed to be quick and easy, I now have to deal with this?? (Not to mention all the other random health-related issues I've dealt with in my past... This is not my first tumor.) So I had a short, mopey afternoon of "this isn't fair" and then - true to my nature - I turned it around. I realized that IF this does turn out to be cancer, I am actually a pretty lucky lady. If I had never had a health condition that required surgery, I would have never had a CT scan. And if I had never had a CT scan, I would have never known about the tumor until it somehow became symptomatic... and by that point it would have had to be pretty damn big and probably metastasized. It would be much more difficult to treat, probably requiring surgery, radiation, and chemo... or it could have potentially been even too late for that to work. But right now it is small (1.6 cm) and according to my doctor would be very easy to remove if it came to that. So if the biopsy reveals a worst-case scenario in this particular situation, it would still be a best-case scenario in <i>that </i>situation. Capiche? So we're keeping our fingers crossed, but whatever happens, I know I will come out okay. I've gotten through everything else; I can get through this, too. It's what I do.</div>
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On a lighter note, I've been starting to feel like too much of a slug after four months of laying around, and I'm out of excuses to remain in bed, so I'm gonna put a little structure to my day starting on Monday:</div>
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<li>I'm going to start taking my melatonin at night again to get into a normal sleep cycle and be able to wake up and be more alert and motivated during the day. More waking hours out of bed!</li>
<li>I am going to eat healthier now that my food restrictions are up. Veggies, here I come!! (Oh, how I've missed you!) Breakfast, lunch, and dinner will be planned out, and no more junk food except planned "cheat days" (calorie cycling). My body is destroyed right now, and I need to provide it with the right building blocks to get healthy again. Plus, I have been gaining weight quickly since discharge, and I want to turn the direction of this train around from destination flab-town to destination fit-city. </li>
<li>I'm going to start each day with some gentle exercise. (Haven't been doing ANYTHING lately since the air in my uterus has been too uncomfortable/painful when I move, but that's oh-so-slowly letting up.) I'm going to re-start my gym membership that I froze back in September so I can go to yoga classes and start slow swimming again in addition to walking and some gentle strength-building calisthenics at home. I'll put together a schedule of alternating exercises for each day. When I slow-jogged one mile a week ago just to test the waters, I found that I am not just at square one, but somewhere well-before square one, like square negative five, meaning my body is in worse shape than if I'd just been inactive for a year. My joints, muscles, and cardio were all really tore up by the end of one 13.5-minute mile... It's going to be a good while before I'm ready to run again. So REHAB here we go!</li>
<li>Will try to do at least one productive thing each day, whether it be an errand, chore, DIY project, art, socializing, writing, shopping, etc. I want to try out some stuff I've been pinning on Pinterest, so I figure this is the perfect opportunity.</li>
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And that's it: sleep, food, exercise, activity. Of course I will start out really slowly with all of this, but hopefully it will build momentum pretty quickly. It's been about six weeks since my second surgery, so it's time to start engaging in my life again.<br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><b><i>My bedroom door: displaying all the get-well cards and good wishes<br /> people have been sending me over the last few months. I am loved.</i></b></span></td></tr>
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I have been feeling great, eating a lot, digesting, and pooping just fine the last few days. Trying to keep myself busy with reading, watching Netflix, snoozing, and walking a lot (2.5 - 3.5 miles per day). We've really just been waiting for my white blood count to get down and stabilize and for the drains on my sides to finish draining the fluid build-up and resolve the infected abscess to make sure I don't go home with an infection or something that could turn septic. So just a lot of hanging out and waiting lately. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM_LAQOlI90GbRTIFzkkJiAK32UGaYLNcIUldsHFTqyHZOAqyCm3enKxDdmDw7vk1ZfQNGzlKRekZOYapKL5DKJrV47niuuEGdSUN4ZLwFivBAGdp43x2rOO3zBNQCwwjcwJm9mLTc4ezu/s1600/2013.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM_LAQOlI90GbRTIFzkkJiAK32UGaYLNcIUldsHFTqyHZOAqyCm3enKxDdmDw7vk1ZfQNGzlKRekZOYapKL5DKJrV47niuuEGdSUN4ZLwFivBAGdp43x2rOO3zBNQCwwjcwJm9mLTc4ezu/s200/2013.jpg" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifkmq_Tgb9aQpJlVhYEPbRKaVWntvK9Tk5BCH_nd_7jBiCEl2bC7MeST3uZcvcqWEMhqSVWfQnCbpu-Ao3BVrQC0PX5zkFLiFkW1dfYoOqR9ZwWZW67n1AvNgnLZM336MB6P0pfhytEkyR/s1600/New+Years.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifkmq_Tgb9aQpJlVhYEPbRKaVWntvK9Tk5BCH_nd_7jBiCEl2bC7MeST3uZcvcqWEMhqSVWfQnCbpu-Ao3BVrQC0PX5zkFLiFkW1dfYoOqR9ZwWZW67n1AvNgnLZM336MB6P0pfhytEkyR/s200/New+Years.jpg" width="150" /></a><br />
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My parents (who have been visiting me almost every day) came in with snacks and sparkling cider to celebrate New Years Eve with me and watch the ball drop at midnight. We gave an extra bottle of cider to the nurses.<br />
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The procedure they took me down for right after my last post (which I originally thought would be a CT scan) the doctors actually call a "tube check." It's where basically the interventional radiologists (IR) have a live video feed of a low-level X-ray showing on a computer screen so they can see where the drainage tube is in my abdomen. They can insert a contrast solution through the drainage tube that shows up on the X-ray to see where it goes and discover what the abscess cavity looks like, which tells them if it's shrinking/contracting or if they need to reposition the tube to access the area better. When they performed the tube check (I was fully sedated this time, thank goodness), they found that both the tubes were a bit clogged, so they replaced both tubes, and they found that the one on the left needed to be repositioned.<br />
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After that procedure, my white blood count continued to go down, which is good. They did another tube check on Wednesday (three days ago), during which they were able to remove the drain on my right since it was done doing its job, and they replaced and repositioned the one on my left again so that it could reach to a different area down in my pelvis where additional fluid had built up. The next morning my white blood count was down to normal range (for being on steroids, anyway). The doctors wanted to make sure I could get off antibiotics and still maintain a stable white blood count, so that morning they took me off of the antibiotics and detached me from the IV cart. (Yay!)<br />
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My white blood count stayed pretty steady, and the left drain never drained much of anything out of it, so after the nurse flushed it yesterday morning to make sure it wasn't just clogged and still nothing came out, they finally removed it yesterday evening. I was SOO relieved to have it out of me and especially to not be going home with it in, which they said could have been a possibility. At that point I was detached from everything except the PICC line that was still in my arm, which they removed this morning before discharge.<br />
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I forgot to mention in my previous post that about four or five days after surgery, the doctor took the staples out of my surgical incision where the stoma used to be and replaced it with strips of tape. I'd heard removing the staples could be painful, but it wasn't at all. I was told to leave the tape strips there until they fell off, which finally happened yesterday evening. (It would have happened a lot sooner had I been showering, but I've been sticking to sponge baths due to the drains, dressings, and PICC line.) So here is a photo of what the incision looks like twenty-three days post-op. It is two inches long. (Just for comparison, my larger incision from the first surgery, just below this one, is three inches long.)<br />
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<b>Meanwhile, my j-pouch has been adapting and learning to function! </b>This part is exciting for me. The first couple days on solid food, I had to strain/bear down a good amount to be able to empty everything out, which ended up causing what I believe was maybe a hemorrhoid. Either way what I felt for a day or so was an intense burning sensation inside my anal canal every time I had a bowel movement. The outside skin was fine since I'd been using the baby wipes and barrier ointment provided by the hospital to prevent "butt burn", but it didn't reach inside where this particular burning was. Well I decided if it was a hemmie, I needed to stop bearing down, which I've heard you're not really supposed to do much with a j-pouch anyway, so I tried that for a day. Even though I felt like I had to go a bit more frequently since I wasn't able to empty everything out each time, it helped, and the burning sensation disappeared. <br />
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<tr><td class="tr-caption" style="text-align: center;"><i style="font-size: small;"><b>The milkshake was amazing.</b></i></td></tr>
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After that things improved even more, seemingly overnight, and for the past few days I have had a perfectly functioning j-pouch. I am surprised at how well it works this soon after starting to eat solid food. I haven't been able to count exactly how many BM's I'm having a day (the nurses erase my tally on the white board every time they record it in the computer), but I would estimate 5-8, which is average for someone with a j-pouch. I will start another tally when I get home so I can give you a more accurate number on my next post. I have no pain, no urgency, no leaks whatsoever. I have complete control and can hold it for as long as I want or need, and I can pass gas easily whenever I need to without risk or worry of passing anything else along with it accidentally. Of course, this may be due to the fact that I had a lot of practice at that particular skill during my seventeen year stint with ulcerative colitis, but either way I'm happy with the results. Everything functioned great even after eating the fast food my parents brought in one day and the salted caramel chocolates - so good! (Keep in mind that even though I was still in the hospital, this was like three weeks post-op, so the majority of the swelling had gone down by then.) I know there will most likely be a good amount of back and forth during the first few months; I will have to see how different foods affect how my j-pouch functions, and other issues may still arise down the road, but if it's functioning this well after only a few days of solid food, imagine how it will adapt and mature over the next year. I am happy and excited about starting a disease-free life, and now that the surgical complications are out of the way, so far I am a very happy j-poucher!<br />
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<b>Before moving on, I feel I should pause here and explain something that no one ever shared with me before I had surgery. </b>Because I am now pooping with completely different equipment, all of the sensations and muscle commands involved are different. (I discovered this while passing mucous daily in between the surgeries but wanted to see how it compared to passing stool.) Think about it - this is something I've done multiple times a day for my entire life (that's about 30,000 times) - it's as natural as breathing - and suddenly I'm doing it with a new body part. It's kind of like trying to brush your teeth with your left hand: the body part functions just fine, and it's doing the exact same job, but it feels very weird. It's a bit awkward and clumsy at first and will take some practice to get really efficient at it. Because the muscles and nerve endings around the rectum (where your poop is usually stored before evacuation) are no longer there or connected, I now can't really feel anything before the actual anal canal. Another j-poucher described it as feeling like someone else doing the work/pooping. In order to go, instead of flexing the muscles around the rectum, I now have to relax all the muscles around my pelvic floor as much as I can while gently flexing my abdominal muscles. It takes a little practice to be able to really evacuate everything in there. Some people have tricks like coughing or standing up and sitting back down. So if you're going to have surgery, really feel and remember what it feels like to poop before you go in, because you will never feel that sensation again. I kind of wish I had paid more attention the last time I pooped before surgery... There was a short moment between my surgeries where I did have to grieve this aspect just a tiny bit.<br />
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Anyway, I am so excited to be going home today, but before signing off for today's post, I have to stop here and give a shout out to the nurses and staff on the 5 North wing of UCSF Medical Center at Mount Zion. After spending over three weeks in the hospital here, I have had many of the nurses on this floor, and almost all of them have been amazing. They are caring, supportive, and respectful, getting me whatever I required and helping me in any way they could. I can tell they really care about their patients, and they always listened to my needs. I went through some pretty rough times while I was here, and they all did what they could to make me as happy and comfortable as possible, which really made a difference in my stay here. I know they put up with a lot in their line of work and see people at their worst, but they still manage to have a positive attitude and show kindness and attentiveness to the patients in their care. The doctors pop in and out, but the nurses are really the ones that make a world of difference when it comes to those of us on the receiving end. So nurses of 5 North, I know some of you will be reading this, and I want to say thank you again for the care and compassion you showed when taking care of me. <3<br />
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My posts from now on will become a little bit less frequent as I get back into life with a j-pouch, but I will continue to post photos of how my scars are healing over the months and updates about how the j-pouch is functioning and maturing as I start back at work and get back into my fitness and athleticism.<br />
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Here's to the first day of my new life... Grabbing 2013 by the horns!!! :-D<br />
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Well here it is, sixteen days post-op, and I am still in the hospital. There has been a lot of back and forth, but I think I am finally steadily headed in the right direction and will probably be going home soon. Here is the scoop on the last week and a half since my last post...<br />
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After that bad episode with the ileus, they tried to put me on clear liquids and then full liquids again, and I had the same problem: nothing passing through, excessive belching, bloated/distended belly, and eventually heartburn that turned into nausea that turned into spewing black-green digestive juices out both ends uncontrollably, easing up a bit by morning. I think at that point I may have also been running a bit of a fever. The vomiting was brief, but it was so violent (a LOT came out) that it strained my ab muscles, which caused me a significant amount of pain for the next couple days. I was spent, sore, and starting to get into a "give up" mind-frame. On Wednesday, the 19th, they did a chest X-ray (to check for chest infection) and a CT scan to try and figure out why my bowels were not functioning properly.<br />
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I had been resisting the NG tube this whole time because frankly, it just sounds awful: a tube up your nose, down your throat, and into your stomach. And you can feel it there; it makes it difficult to talk or swallow. The purpose of the NG tube, though, is to suck all the nasty digestive juices out of the stomach and upper small intestine that causes one to feel so sick and bring some relief and rest to the GI tract from having to try to pass and deal with all of it. Other people on j-pouch.org who have had it said that although the tube itself is unpleasant, it brought instant releif from the symptoms, and my surgeon said that it could help resolve this ileus issue. So when I could tell it was starting to happen again the next night, I told them to put the NG tube in before I started vomiting again.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6TPJd_dq7B1qmzBiLdZXHdVkD2nLthOmy29ly_zUGoph2fLqxXEA7SRI_hLuLvD3di1Ji0LWd6pOTq4xzX-z9ZMTEBGc5lzIRORYVGpJaWFU0g4aYD_XnxkUnM5efOOo9QdUiSVb7CsPk/s1600/NG+tube+in.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6TPJd_dq7B1qmzBiLdZXHdVkD2nLthOmy29ly_zUGoph2fLqxXEA7SRI_hLuLvD3di1Ji0LWd6pOTq4xzX-z9ZMTEBGc5lzIRORYVGpJaWFU0g4aYD_XnxkUnM5efOOo9QdUiSVb7CsPk/s200/NG+tube+in.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><b>NG tube = no fun!!</b></i></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_kCe-XzZf54vbJWVYhoesJUxK6kv1s4ley9z_WV_EGzjRTpLz_I1sDBMzASB97TUupuEGui4CLAn6U_UMCaRDxa91HM2A8NXyGUZDtVljfIlTEN5nOTn21HbQuFvNvIaSHrKr1RPK-Syk/s1600/NG+tube.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_kCe-XzZf54vbJWVYhoesJUxK6kv1s4ley9z_WV_EGzjRTpLz_I1sDBMzASB97TUupuEGui4CLAn6U_UMCaRDxa91HM2A8NXyGUZDtVljfIlTEN5nOTn21HbQuFvNvIaSHrKr1RPK-Syk/s200/NG+tube.jpg" width="112" /></a>I'm not going to go into excessive detail about my experience with the NG tube here because I believe I had a particularly bad experience that is very atypical, and I don't want to scare anyone off of using one themselves. I think the main problem is that they chose a size of tube that was too big. But basically it was extremely painful and traumatic going in (felt like it were breaking through some area of my nasal cavity that it shouldn't go - just felt wrong - but they busted through anyway); it was painful while it was in (couldn't talk or swallow, could feel it down my throat and in my belly all sore); and it was even more painful and traumatic coming out. It got stuck in the same spot, and the nurse had to pull very hard (three times) to get it out my nose. She is quite experienced with these things and says that NEVER happens - it usually just slides right out. (In fact, I have heard from a few people who accidentally knocked them out or sneezed them out.)<br />
<br />
I can tell you that there is not much that will take down my drive and positive attitude, but if anything could do it, it was my experience with the NG tube. It broke my spirit. Took the life out of me. But it did its job and got the sickness out. It was in and sucking nasty bile out of me for three days before it finally started running clear and was no longer needed. It was removed at 2:00 AM on Sunday, so four and a half days ago.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvHp81sEEYsF2Hb3_Hc32p0IDYIFV3Ex2KXNlDjo-jIA_7N8JmxaW16RTxOXvEA3oaIXTMjNQcVkX2atuPId7xnQIaF6YXljo6nJ68S9VfsXLpZ0HoEWX8Nw3GLoo6VG1bAN6hmcEO5TnK/s1600/Picc+Line.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvHp81sEEYsF2Hb3_Hc32p0IDYIFV3Ex2KXNlDjo-jIA_7N8JmxaW16RTxOXvEA3oaIXTMjNQcVkX2atuPId7xnQIaF6YXljo6nJ68S9VfsXLpZ0HoEWX8Nw3GLoo6VG1bAN6hmcEO5TnK/s320/Picc+Line.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><i>My PICC line: an IV line that goes up my arm and into my <br />chest near my heart to most effectively deliver the multitude<br />of meds and nutrition I'm getting pumped into me.</i></b></td></tr>
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I was very happy to have the tube out, but after that traumatic experience, my heart rate was elevated, and my body spiked a bit of a fever again (101.5), which had me feeling pretty awful, but it died down to 99.5 pretty quickly and stayed there for a day or so. The following morning my white blood count was elevated, and the doctors noticed a build-up of fluid in my abdomen on my last CT scan. So before I could progress with diet or anything else, they had to get to the root of what appeared to be an infection of some sort. The solution for this was to insert a drainage tube into my abdomen to drain the excess fluid and start me on antibiotics. The antibiotics I could care less about: sure, I have an infection - throw 'em in the mix. The drianage tube, on the other hand, I was not at all looking forward to. But it was unavoidable; they had to get the fluid out because it wasn't absorbing on its own. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUfBZk91BPW5AegGrB88A7R_Bxb_iDyeXK0ZExejx6L71bYFo8SHkK72fgG2AYD_D0mDSwr0kVmQ8RWBmGpnQFqg6z32Dyu7UcCw-zAloCQ2Cgps37uwDUyLwAy2g0Ks7FcFgOrtkMI90B/s1600/IVs.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUfBZk91BPW5AegGrB88A7R_Bxb_iDyeXK0ZExejx6L71bYFo8SHkK72fgG2AYD_D0mDSwr0kVmQ8RWBmGpnQFqg6z32Dyu7UcCw-zAloCQ2Cgps37uwDUyLwAy2g0Ks7FcFgOrtkMI90B/s320/IVs.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><i>The plethora of meds and nutrition running<br /> into me via the PICC line. The number<br />of bags goes up and down throughout the day.</i></b></td></tr>
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Because it was a holiday, they had to bring in an on-call team to do it, so by the time the team got here and ready it was 10:00 PM on Christmas eve. Once I got down there, they told me I would actually be getting two drainage tubes in, one on each side. Great - double the joy. After they did another CT scan to find exactly where the abscess was, they marked the spots on my belly and got to work. Now, normally when the hospital is fully staffed, they would sedate me with lots of drugs so I would be practically unconscious and not feeling much. However, because they did not have the proper nurses to watch me closely afterwards in the recovery area before being wheeled back to my room (the only one there had to rush off to another on-call emergency), they were not able to sedate me. They gave me a small amount of Fentonyl (pain-killer) through my IV, but my tolerance for those types of pain-killers is pretty high by now, and I was fully awake and aware through all of it. They did give me some local anesthetic, and I'm sure it would have been much worse without that, but I could still feel everything they did to me, and it hurt. A lot. There was one guy on each side of me working simultaneously on each drain. They started by inserting long needles into my abdomen. Then they ran wires in and retracted the needles, and then they shoved the tubing in around the wire and situated it were it was supposed to go before taking the wire out. Finally, they stitched the tubes in place on my sides and applied the dressing. They removed 200 mL of fluid from the left side and 100 mL from the right side (taking samples to send to the lab of course) before attaching the bulbs at the end of the tubes that would collect the fluid as they continued to drain. All around, another pretty traumatic experience.<br />
<br />
The next morning, I woke up in quite a bit of pain from the drain sites, and it felt like was back where I was after surgery one - unable to move or use my abs, needing a lot of assistance to get out of bed, etc. What was coming out of my right drain looked pretty normal (yellowish-tinted clear fluid) and minimal, but what's been coming out of the left drain is nasty, stinky, milky/pussy fluid that is obviously coming from wherever the the infection must be, so it's a good thing we're getting it out of me. Over the course of that day (Christmas) the pain from the drainage tubes slowly died down a bit, and with the use of my pain pump I was able to be pretty comfortable as long as I was laying in bed and would just feel pretty sore when I tried to get up or down. Over the next few days it very slowly got less painful, and today I'm able to get in and out of bed without too much trouble. I've been on antibiotics since then, and all of my vitals have returned to normal. The last couple days I have actually been feeling pretty good.<br />
<br />
Right after I had the drains inserted, I almost seemed to have a bit of a speed bump again with my GI tract on Christmas day: belching, a bit of nausea (which I still attribute to the high doses of Dilaudid I kept myself on that day), nothing (no gas or fluid) coming out down below, bloated/distended belly. But with a little walking and some hot-packs, things started moving that evening, and by nightfall turned into a "mass exodus" with me farting up a storm for a couple hours and then draining everything out of me like a faucet (going to the bathroom non-stop). There was a point in the night where I just plugged my IV cart into the outlet in the bathroom and hung out on the toilet for an hour or so because I was tired of going back and forth to the bed. I didn't get any sleep that night. But things slowed down as the morning progressed, and I was pretty comfortable yesterday.<br />
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Since all my vitals and GI tract function seemed to have returned to normal, yesterday they started me on clear fluids. (I'd been on either "nothing by mouth" or just ice chips since well before the NG tube, so several days.) I spent the day reading, walking laps (35 that day), napping, watching Netflix, and sipping on my fluids. I was comfortable. Today they progressed me to "full liquids" (soup, yogurt, pudding, etc), and I have felt even better, apparently tolerating and digesting the semi-food just fine. This evening is when I finally started having BM's that look more like a BM (refried beans) than something an alien would spit out (neon green-black fluid).<br />
<br />
My surgeon stopped by today and told me that the next step would be to take me down for another CT scan to see what was going on with the abscess (space where the fluid had been collecting) . They would insert a little contrast fluid into the drainage tube that is there to see where it would go. It would either show that the abscess was shrinking and contracting to close up on its own, or it could potentially show where the fluid had been coming from if it shows a path either to my j-pouch or the site where they sewed my stoma closed. Either way would be useful bits of information, but of course we're hoping for the former so that I can hopefully go home soon.<br />
<br />
At any rate, I have been feeling much better and seem to be out of the woods. If all goes well, they may start me on solid food at some point tomorrow, and as long as the infection site continues to take care of itself and I'm digesting food okay, then I could possibly go home this weekend. (Fingers crossed.)<br />
<br />
Before I sign off, I want to be clear that through all of this - as far as we know - none of the complications I have been through have anything to do with the actual j-pouch. They are all post-op issues that could come up after any type of major abdominal surgery. The j-pouch hasn't even had a chance to really show its stuff yet since I haven't really had a chance to digest solid food yet. So far it's been doing it's job just fine, easily passing whatever comes into it.<br />
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Anyway, the important thing now is that I have got my spirit back. I'm looking forward to my future again - I can't wait to get home and finish my recovery, introduce my j-pouch to new foods, start walking and slowly getting back into my fitness goals. I am still hopeful and optimistic.<br />
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