Fighting For It.: Ray of Hope

Summary Bio

I have a long list of illnesses (see it here). In 1995 at age 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 Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Sunday, July 1, 2018

Ray of Hope

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.....

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!

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.

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).

(NOTE: The work on my calendar in the screenshot of my phone desktop refers to my hubby's work schedule, not mine! As if. 😖)