Help Donia get a hospital bed for Myalgic Encephalomyelitis

For: Donia Lilly
Organizer: Donia
of $5,000 goal.
Raised by 55 donors
63% Complete
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The Story

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. 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).

Fundraiser Updates

Posted on September 5, 2016

Posted on September 5, 2016

There are so many things that can go wrong when your immune system & neurological system are involved. The past couple of weeks I've been a "punk pirate" (if I couldn't laugh at myself, I'd be in trouble) because I had another flare-up of Acute Anterior Uveitis (my 3rd in less than 2 years - the lens in my eye gets inflamed and every time there's any change in light, making my pupils contract even slightly, it feels like a knife through my eye to my brain).

Since pupils track together, you can't just cover up the affected eye... so I had to go around with a blindfold on until I could get my affected pupil dilated (ophthalmologist's assistant says I should use the dilating drops for Halloween :P) which it's been for 2 weeks now - so I've been wearing an eye patch.

Combined with my asymmetrical haircut (again, courtesy of M.E. since I can't get through shampooing, conditioning AND detangling in one day, so I shaved the side of my head and cut the back to make it more manageable) it makes me look like... a punk pirate. See new fundraiser photos I've added for details and a good-natured laugh :)

Posted on July 29, 2016

Posted on July 29, 2016

I finally saw a Cardiologist yesterday and was diagnosed with Postural Orthostatic Tachycardia Syndrome - one part of my overall Autonomic Neuropathy problems that make it uncomfortable to stay sitting up, painful to stay standing, and intolerable to raise my arms for more than a few seconds. Also the reason I can't drive anymore. It's likely my central nervous system has been damaged by the Myalgic Encephalomyelitis (M.E.), but all of these conditions are rare and little understood so it makes this tangle of illnesses all the more difficult.

If I didn't have M.E., one recommended treatment for the POTS would be aerobic exercise. But if you've read my blog post about M.E. you know that will only cause my health more damage. So for now I've just been prescribed salt pills to raise my blood pressure in the hopes that will help some of my POTS symptoms, but it won't address my other Dysautonomia symptoms...

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