CallaFirestormBW
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Joined: 6/29/2008
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I would have posted this on the other side, since I'm not big on public publishing of my sh*t, but since you don't have a profile for c-mail there, here goes:
quote:
ORIGINAL: UR2Badored
That is very admirable. I hope I dont let my particular disease define me, but boy does it bring me to my knees. Is your particular disease considered an orphan disease?
It's not admirable. Honestly, to me admirable is when you do something hard that benefits someone besides yourself -- this was pure, unadulterated survival. The doctors told my parents, shortly after I was born, that I would never survive infancy. Nobody knew what to do with me, because the docs kept saying I would succumb to whatever the disease-of-the week was because of my flaky immune system... so nobody tried to do anything for me because that was the most "merciful" thing to do -- just let me die. But I didn't die.
30 was the first "milestone" that was "solid" in the eyes of the medical profession... "IF she lives to 30" was the pat phrase. When I hit 30 and was still alive, I had to completely re-negotiate my entire idea of what my life would be... or just give up and die because I was supposed to. I grew up with skin that literally peeled off in sheets, and caused my extremities to become "glued" to the stockings, long sleeves, and tights my parents put me in to hide the fact that my body was destroying itself. When that quieted down, my body started gnawing away at my neuro system and organs. Now, I get occasional bouts of both of the earlier problems, plus whole new sets of crappy, painful symptoms... and I keep saying that, I don't care if it's not "natural"... if they can gene-splice me a new body, I'll take the chance and be the damned guinea pig to see if it works. It can't be any worse than this, right? I want a new body -- I'll even take an android body.
My condition is so rare that only a handful of cases have ever been documented and nobody bothers studying it, except in comparing genetic scans to see what genes might trigger certain parts, like, for example, the MS-like symptoms, which the people who are researching MS want to know about so they can compare with people who have -only- MS to see if it shows them anything they can use. The other group that has an intense interest in my genetic profile are the doctors trying to unravel unresponsive atopic dermatitis. I would -love- for them to have a breakthrough that would help me, but so far, they haven't learned anything from me that they didn't already know.
I've had -years- of missed and incomplete diagnoses, and the -right -diagnosis (if it -is- the right diagnosis... it finally describes everything that has gone on with me my whole life, though) finally only came about 2 years ago, during a hospitalization for an auto accident, while a neurologist was checking some obscure stuff trying to control the muscle spasms so my hip could heal. The closest you can come to describing what I have in a disease people can research is a disease called Job Syndrome or HyperIgE syndrome (which is also either an orphan disease or close, and is what they diagnosed me with up until 2 years ago, despite my life expectancy and other inconsistencies). The very things that differ in my disease, though, are the things that mean that the few of us that there are have to figure out to live out a normal, full life-span like this.
Don't get me wrong -- this thing can -literally- bring me to my knees. It can still make me cry, even after all these years -- and just when I think I've figured it out, it finds a new way to torture me. My own body is, perhaps, the most creative sadist ever designed. But I'm a stubborn b*tch, and I'll keep saying I'll never give up, even when I'm in a fetal position, just because I'm too ornery to not go down fighting (I'm Irish and Sicilian -- what do ya expect *LOL*). Some days, though, I'm so tired that the whole idea of having to breathe seems like an effort... then that stubborn b*tch side kicks in...
Now that I think about it, there must be some kind of masochistic tendency in here, huh? *laughs*
Having someone else to do the laundry, though ... I could sure overlook a lot for someone like that.
CFB
< Message edited by CallaFirestormBW -- 8/9/2008 10:15:34 AM >
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Said to me recently: "Look, I know you're the "voice of reason"... but dammit, I LIKE being unreasonable!!!!"
"Your mind is more interested in the challenge of becoming than the challenge of doing." Jon Benson, Bodybuilder/Trainer
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Chronic Pain and Painsluts - 
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and massaging with herb-infused oils that are good for this slaves hands & elbows. 
Too late to edit now. 
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