May 2017 - I'll post a full update soon, but want to put in the description here that I'm adding to my fundraiser the unfortunate need at this point for an electric wheelchair...
July 2016 - My condition has greatly degenerated over the past year+ to the point where I'm mostly bedridden and can't leave the house for months at a time (when I do - even for an hour - I am even sicker and in more pain for weeks recovering from the outing).
I need to buy an adjustable bed to help me rest and sleep without so much pain -- painsomnia adds greatly to the cycle of exhaustion, pain, and weakness. It will also help me avoid further injury to my neck when I read (I have problems with my cervical spine) because I have to spend about 90% of my day in bed now. Living on an island means items like these are extra expensive due to shipping costs. The faster I reach my goal, the faster I can purchase this pain-relieving device.
The fundraiser will not have a time limit so that any additional funds raised will go toward therapies which greatly help my medical conditions but my insurance inexplicably will not cover (such as acupuncture, which is proven to help with Migraines, etc).
Here are some excerpts from my long blog post
that explain what's been happening with my health:
We live in a society that constantly tells us:
Go! Go! Go!
No Pain, No Gain!
Never Give Up!!!
But the tragedy of this is that for people like me with Myalgic Encephalomyelitis - a multi-systemic neuro-immune disorder - that very approach to life causes severe degeneration of our health.
So I haven't been struck down by a new condition, but one that has apparently been the major cause of my deteriorating health for the past 19 years, to the befuddlement of doctors when I finally started seeing them a only few years ago (This is in addition to the Endometriosis I've dealt with for decades that some of you know I had surgery for last winter). My Myalgic Encephalomyelitis has progressed from mild to moderate over the years to now severe this past year. At this point, I just hope I never reach the extremely severe stage, like Whitney Dafoe. My heart goes out to him and his family who are racing against the clock to solve this mysterious illness.
Myalgic Encephalomyelitis affects the autonomic nervous system, the brain, and the immune system which in turn can affect so many other systems in the body. (It's similar in some ways to Multiple Sclerosis but is often even more debilitating, affects at least twice as many people in the US, yet gets only 5% of the research funding that MS does). They suspect that it involves mitochondrial disfunction. But the crazy thing is, they don't know what causes it nor how to treat it. (When a subset of patients were labeled with "Chronic Fatigue Syndrome" (which is sometimes used synonymously with M.E. and also called MEcfs, but they're actually not the same illness, and "fatigue" is the least horrible thing about it) that new label gave doctors and the public apparent leeway to trivialize and neglect a real illness for decades).