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$5,025 of $18,000
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26 donations

This fundraiser ended on 10/31/12

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All funds will go toward uncovered medical or living expenses as I rebuild post EDS "storm" of 2012 waiting for disability.

I'm crying uncle and holding my hat out - I need your help to rebuild "Jandroid 2.0" (Better! Faster! Stronger! - at least than she was in February 2012, smile.) Ahh, it’s happened. I’ve hit the proverbial "wall", in this case the medical expenses wall. You know, the one where your finite retirement savings at 45 no longer holds a candle to your medical bills, and you're unexpectedly disabled and can't work and were self-employed with no benefits. Yup, that’s where I’m at, after succumbing to a “storm” of Ehlers-Danlos Syndrome Type III symptom onset early this year (2012) that took me from walking to wheelchair in two weeks. (Seriously, I saw my doctor of 15 years for the first time in over 3 years on Feb 1 where I warned him “whatever I have is getting worse”, and two weeks later had to have a friend wheel my shattered body to the geneticist Feb 14th for diagnosis of EDS III after my R SI joint split rolling out of bed one day, my R leg subluxed, along with fingers, ribs, tailbone and toes – I even partially paralyzed at one point, oy! Now I know why I had chronic fatigue, fibro and joint pain all these years!)

For those not familiar with EDS yet, it’s a semi-rare genetic collagen defect that affects an extremely wide array of body systems, but is most noted for hyper-mobility (flexibility) of joints. (Yes, it's as painful as it sounds.) Most people with EDS are quite “bendy”, or were in their youth, before they start “breaking” or subluxing and dislocating various joints after it progresses at some stage in their lives. (Some never realize they have it, lucky dogs;). Its’ as individual as fingerprints though, and everyone experiences a different age, rate and severity of onset, even within the same family with the same type. (Why it takes 10 years on average to be diagnosed.) Not all are nearly so severely affected either, thankfully. But some are even more severely, especially if they have vascular or GI issues. (Please see the links at the bottom for more info). We've adopted the zebra as our rare disease mascot, since most doctors are trained to think "horses" upon hearing hoofbeats, when we turn out to be that other rare possibility - a zebra.

Yes, this has been a harrowing year to say the least, especially since I Iive alone and have no family around! I’m SO thankful for my many dear and wonderful local friends who saw me through this storm and continue to help me pick up the pieces. (Hauling, cleaning, cooking, shopping, feeding). But though I’m slowly but steadily recovering (I’m no longer in a wheelchair, and am back to getting most places on my own slowly on Lofstrand fore-arm crutches), I’m not out of the woods, sigh. I can’t walk more than 2 blocks or stand more than 10 minutes without needing to sit or rest still, and I’m having to learn how to make up for a faulty autonomic nervous system while managing 206 loose bones (phew!) It’s now taking all my waking hours and energy to cope with activities of daily living and keep up the PT and hydro-therapy that have helped me to get this far. Every outing takes a toll due to the severe joint laxity I still seem to have now, along with the ravages of dysautonomia (or “dys”, including the wonderfully named subset “POTS” – postural orthostatic tachycardia syndrome) that seems to accompany this condition like a cheap suit. This leaves me stuck trying to manage my breathing, heart rate, BP, and digestion as consciously and mindfully as I can at all times, while trying not to injure conducting normal life! Piece of cake – not! (I can hear those of you with this nodding your heads loudly! Please be careful;). Yes, I fake it well, and don’t’ go out when I’m down, so I always “look fine” when you see me. (Or try!) I also don’t go out much any more and spend a lot of time recovering or coping silently.

Needless to say I’ve stopped working even for myself (was a successful self-employed database programmer and nature photographer and actively volunteered for several non-profits), and have applied for disability accordingly, until I can get my physical systems a bit more stabilized and settled and do more than just manage to eat, bathe and fetch groceries with an occasional random outing leaving me bed ridden to recover. I’m also super busy finding best tips and solutions for managing in my condition, no small feat when you live alone. Thankfully I’ve found some great support online, and could not have fared half so well without the support of my dear virtual zebra friends – thank you all! My doctor owes you!

Alas, I’m maxing out my out of pocket expenses ($10,000) on my insurance this year in the process of rebuilding, and my retirement account is almost gone. I don’t have that much left in retirement now, and disability may still take 6-12 months to kick in. It will only pay $975/month even then, so I’m trying to get help before it kicks in so I can prepare to live on vapors after that. (I have before, but can’t have outstanding bills in the process, natch.) So I just need some help getting over the hump until then, after which I can apply for poverty care and will when needed. (You can't have any assets at all.) Although this condition is permanent, I do expect to improve a bit if not even a lot more if I’m lucky and can pursue some nutritional treatments I've read about recently. (See http://mthfrheds.com for one).

But there’s no way to know how much better I will get than I am now, if at all. (Some folks never do very well, despite best efforts - it really varies widely. I'd so much rather be debugging databases than my body!) I’m just going to keep doing all I can to optimize my recovery through healthy living and diet, and having the time to do physical and hydro-therapy is truly key to this, as well as resting and recovering between efforts on my own. I’ll be the first to admit, I had no idea what was coming back in December of 2011 when I felt my body “changing” a bit and scrambled to get my insurance back! ANY amount at all will truly help, and is DEEPLY appreciated, thank you so much!!

More on Ehlers-Danlos Syndrome:

http://www.reumatologia-dr-bravo.cl (CL)

http://murrwaywoodfoundation.org (US)

http://ehlersdanlosnetwork.org (US)

http://ehlers-danlos.org (UK)

http://medicalzebras.com (US)

http://hypermobility.org (UK) <--other common name for EDS III (Hypermobility Type, or "HEDS")

http://cedsa.org (US)

http://ednf.org (US) <--see "So you think you have EDS"

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