I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Friday, September 30, 2016

Missing in Action


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, 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.

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.

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.

By the end of it all, I had fibromyalgia.  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. (Click here to read my "Studies & Research on Fibromyalgia".)

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 "Personal Health History" page. You will find that I have been dealing with both mental and physical illness and diagnoses my whole life... but 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.

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, I fought for it.  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.

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, I fought for it.  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.

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, I fought for it.  I fought for my blossoming career, and I continued to work.  I fought for my identity and self-worth.  I fought for my freedom.

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…..  I fought for it.  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.  I fought for physical fitness. I fought to keep a roof over my head.  I fought not only to stay in my career but to be successful at it.

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.

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.  And I’ve got nothing left.  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 "The Spoon Theory" 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.

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 this disorder of the nervous system is the most physically and mentally debilitating and incapacitating illness out of anything I have ever experienced.  It’s the one that has taken me totally out of the game when nothing else did.  Yet it is invisible, 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.

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. But I didn’t. 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 caused my illness. Getting back to it is never going to be a reasonable or effective solution.

All I'm working towards right now is disability retirement, which would only provide me with half 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 significantly 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.

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.

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!! But it is all just a goal right now. 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.

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.  How I have maxed out what I am able to realistically deal with at one time.  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.


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2 comments:

  1. My heart goes out to you. Fellow teacher here, 31 years in the classroom. Dealing with fibro 20+years and I can tell you it is progressive. Teaching is such a stressful profession today, much more than when I started over three decades ago. I know how the stressors of the classroom are affecting your mind and body. If you can retire on disability, I encourage you to do it. We only get one life and you need to live it in a way that is best for you, no one else.

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    1. Thank you for your kindness and support. I don't know how you do it with fibro. Just being in the classroom is such a big trigger for me now, I can't last more than a couple days. Stay strong, sister!

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