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asleep at mal 9/09
i never thought i'd be in a position where i needed to ask for this… 
7/30/09 5:44
asleep at mal 9/09
i never thought i'd be in a position where i needed to ask for this kind of help, but i think i'm out of other options so here goes...

i know a lot of you can't afford to donate or not much, but if a whole lot of people donate just a few dollars it will have the same result - so please repost/retweet any and everywhere if you can; i'd greatly appreciate it

those of you who know me are aware that i've been struggling for the last couple of years with continually worsening health conditions. the official diagnosis is hashimoto's thyroid coupled with fibromyalgia and possibly chronic fatigue syndrome. i've been in treatment with a team of specialists since early 2007 (my regular doctor back in MD was treating me for straight hypothyroidism and i was not really responding because my body is more broken than that).

everyone's heard of fibro and chronic fatigue, but hashimoto's may be new to many of you, so i'll try for a brief explanation (note: this is based on my understanding of what my doctors have explained to me; i am not a doctor): it's an auto-immune disorder, where the body's immune system works to take down it's adrenal system, including destroying the thyroid gland. this means i have a poorly functioning immune system in general (i get sick - easily, and a lot). in my case it also means that my body is taking the T4 it makes (which was almost none - the damage to my thyroid tested as severe) and/or that i was taking in the form of synthroid and turning it into reverse T3 instead of the T3 i needed. reverse T3 binds to the same sites that T3 does, only instead of stimulating a normal metabolism it blocks metabolic function. this behavior is useful in times of famine - reverse T3 slows down your body's metabolism and other functions so that you burn less energy and are more likely to survive until new food sources are available. however, we're not in a time of famine, and the reverse T3 is wreaking havoc with my system.

the doctors and i countered the reverse T3 problem by taking me off synthroid and putting me on natural T3. and for a while it worked very well. we also worked to repair the damage to my adrenal system in the hope that i'd be able to decrease the number of prescriptions and replacement hormones sometime in the future. again, for a while that seemed to be working; my bloodwork was coming back with small improvements every few months, and the doses of some of the hormones were dropping (and in one case was eliminated entirely). now, however, i seem to be in worse shape than before - in addition to the memory loss issues i have been so frightened of, i'm sleeping 12-16 hours a day and the numbness and pain is hitting more often in more parts of my body.

i can only guess that my adrenal system has repaired itself to the point that it's once again making T4 - only my body's still turning that T4 into reverse T3 which i definitely don't need (but i could be entirely wrong - last time my reverse T3 to T3 ratio was off i also gained a lot of weight quickly but that's not happening this time - the 20 lbs have been creeping on rather than a quick gain). i need to go in for new tests and another round of doctors visits to figure out what is causing this. i also want to continue working with them to see if we can determine what is causing the memory problems (so far, stress reduction and anti-anxiety meds aren't helping) so that i stand a chance of finding a new job sometime soon (right now, between sleeping so much, and not being able to pass the basic math and logic part of an online screening tests twice in the last two weeks i think i'm pretty well stuck at unemployed).

as for the worsening numbness in random parts of my body - i've had problems with my right leg from the hip down since i fractured that hip over 20 years ago, but now i'm having similar numbness in my other leg, my shoulders, and my lower arms/hands - in the last month i've burned myself pretty badly on at least three separate occasions while cooking (i have a lovely trail of burn scars running up my left wrist) and i've sliced open fingers twice as well. so even when my brain isn't mush i am having problems completing simple everyday tasks without injury (have i mentioned how much i hate not being able to do things myself?). anyway - this too needs to be investigated thoroughly and hopefully treatment found. and another new and nifty feature of all this is the sudden need to sleep a lot (i kind of miss the insomnia right now - at least then i was awake for most of the day) - i seem to be hitting 12-16 hours of sleep per 24 hours - again, obviously thyroid and/or other things are off, and again, this makes finding a day job near to impossible.

here's where the problem comes in - i could mostly afford the specialists and the treatments (so far, bc/bs hasn't paid for any significant part of my treatment and only part of one round of tests in 2008 [after my testing fees topped my $2500 deductible] - i am fighting with them but getting nowhere; my out of pocket medical expenses in 2008 were over $7500) while i was working, but i've been out of work since may fifteenth, and even though i'm eligible unemployment hasn't seen fit to pay me at all. my savings are gone, and i can't afford another round of tests and doctors visits, nor can i afford my next cobra payment (if i lose my health insurance i'm very unlikely to find coverage ever again due to the pre-existing conditions).

so i'm asking you internets for help... if anyone can spare a few dollars to help with my medical expenses, i'd greatly appreciate it. between the i still haven't paid it bill for the last round of bloodwork, my monthly cobra payment, and more tests, office visits and meds i need to come up with at least $5000 to get me through the end of the year in medical costs alone. i am working on getting onto disability, but i'm being told that will probably take 1-2 years (and i need legal help i can't pay for to do that), and i'd much rather get my body, hormones and adrenal system back on track so that i can get back to working a real job.

i know a lot of you are also out of work or struggling financially, so please don't donate if you can't afford it, but please do pass this along/repost the link anywhere/everywhere if you can. unfortunately, i'm not a non-profit organization so this can't be written off on your taxes, and i don't have anything i can give away to contributors except my gratitude. i will shut down this page once i hit the needed goal, monies collected here will only go toward medical expenses, and if i take in more than i need, at the end of the year i'll donate it to The Mayo Foundation who continue to do research into the treatment of thyroid conditions

ETA: ok there is one thing i can do for anyone who wishes it; the post http://alumiere.livejournal.com/324180.html will include a donor's list; if you wish to remain anonymous that is fine, if you want a bit of publicity note that in your donation and i'll link your website, blog, journal, etc

edit - another follow up post at http://alumiere.livejournal.com/324776.html
7/29/09 19:27 (UTC)
I would donate if I were in any position to do so. And I hope I will be in the relatively near future.
7/29/09 19:41 (UTC)
i know you're not in any position to do that atm; instead, spread the word by reposting/linking/sending this out there please? i'm hoping that lots people make small contributions rather than a small group of people (my friends - many of whom are in similar positions) take it upon themselves to give more than they can or should
7/31/09 13:08 (UTC)
Will link from my LJ.
7/29/09 20:45 (UTC)
from a fellow sufferer of auto-immune disasters in chronic fatigue (in the absence of other specific diagnosis, that will have to suffice) I wish you health and luck--while we're often in short supply of both, I think that relative mental strength and perseverance is sometimes our only currency--
7/29/09 21:59 (UTC)
thanks :)
7/29/09 21:26 (UTC)
i'm sorry, that all sounds terrible. i hope when you can get the next set of tests done they can figure out what's going on and really start to fix it. and i hope your insurance company starts to actually hold up their end, that is awful of them.
7/29/09 22:01 (UTC)
i agree w/ you re: insurance - they seem to be the bane of my existance atm, and actively working against treatment which helps - i continue to hope that our new president and congress ignores the republicans and special interest groups and passes a sane health care plan (although doubts about this continue to rise)
7/29/09 21:45 (UTC)
I'm all about respoting this link, but could I ask a favor? Would it hurt your eyes to increase the contrast between the background & the text? I find this fairly hard to read: a couple of people I know, I showed this too, & they can't see the letters well either. Mebbe you could just make the background even a little darker & the text a little lighter?

Anyhow, done what I can do & hope others step up too. *smooch*
7/29/09 21:58 (UTC)
i'm going to hope that this is better - it's way too bright for me to read now, but i can leave it this way for a while and switch back in a month or so

and thank you
7/29/09 22:05 (UTC)
I'm sorry it's too bright for you. I would mebbe just leave it like this while it's being reposted to make it easier for others. It's a shame you can't change the style on individual entries, you have to change the whole journal.
7/29/09 23:51 (UTC)
I am very familiar with auto-immune disorders, my mother has sjorgrens (sp?) which is less heard of than Hoshimotos. It will be pay day before I can contribute but starting right this second I am sending you prayer and positive energy. I'm a Reiki practitioner and will send positive healing blue energy your way. If you want to email me at dawnwc73(at)aol(dot)com I will be more than happy to direct you to some wonderful links about natural and reiki healing.
8/1/09 15:56 (UTC)
not financially in a position to donate but linked from my journal.
Can empathize on BC/BS-- they tried to deny a claim of mine that they had already preapproved. They really are cruisin' for a class action bruisin'.
8/3/09 0:41 (UTC)
Hey, looks like my Facebook repost is actually resulting in some reposts & a coupla donations. Hooray.

Also from a FB pal:

"As someone in the health insurance industry (I am a group benefits specialist) the most useful thing I can recommend is to contact the state insurance commissioner where she lives. BCBS may respond by agreeing to pay for her treatments if the commissioner's office gets involved."

Edited at 2009-08-03 12:45 am (UTC)
8/3/09 1:26 (UTC)
Sending you hugs! Haven't talked to you in a while, but you're definitely in my thoughts! Have you looked into current clinical trials for this condition? Being a former Lyme's Disease patient, I have benefitted from being part of some in the past... an internet search may help you find some...
8/3/09 1:35 (UTC) - website for you
It looks like (on this site--there are others!) that all the related trials have the volunteers they need, but the research coordinators at the listed facilities may know of other studies about to come up... Also, you may be able to get in touch with the people who know more about Hashimoto's than anyone else by talking to the research folks... here's a website listing a few recent clinical trials for Hashimoto's. (volunteers get FREE medical care... you probably already knew that...)

8/4/09 15:33 (UTC) - Re: website for you
thanks! the docs i'm seeing are actually specialists in hashimoto's and adrenal disorders - it's one of the reasons i've been putting up with the high bills is that while i don't qualify for their clinical trials (age, too many complications) i can get the treatments they're testing and they've been excellent to work with
8/3/09 21:50 (UTC)
I am so sorry you're going through this. I donated as much as I can, and I hope it helps, at least financially.

*gentle hugs*

Stay strong, sweetie.

8/14/09 13:13 (UTC)
I have. You need. So here have some money
::clicks send::

I wish you all the luck. While my thyroid seems healthy I understand what you're going through all too well. What I can't grok I can imagine.

I'll try to throw some more money at you during next payday.