Re: EDS wish me luck ELIZABETH

January 31, 2010

greetings,

i go back to doc in just over a month. he's going to do the eval for both EDS

and fibro then. there are some lab tests that can help confirm the EDS, blood

work and skin biopsy in some cases. i know they pulled 5 tubes from me on

thursday. not sure if any of it was for that or not. hoping to skip the skin

biopsy (only useful for certian type of EDS and not the kind my mom has) most

of the dx is based on physical exam. so, should know in the next month or too.

i'm not too worried, even though i know some people would be. if i have it,

then i've already been living with it for the whole 36 years i've been around.

so nothing has really changed except having another label and a new focus for

treatment that my help prevent more things from going wrong. if i don't have

it, then we've eliminated yet one more thing that i don't need to think about

any more.

as far as grim outlook, no big. they've been giving me those my whole life.

when i was sick with the fevers and the blood counts all over and everything

back in the day (age 7 or 8) we were told that i'd be lucky to make it through

the night a couple of times. when my seizures started running really long on a

regular basis, we were told that odds are i would not make to adulthood. when i

was 17, i was told that i'd be in a wheelchair before i hit 40. when i was 19 i

was told that i only had a 15% chance of ever being able to carry a pregnancy to

term. well, i made it thru all the things they said i wouldn't. i'm 36 (37 in

april) i don't see no wheelchair in my house yet (a couple of canes, yes, but

no chair) and i have a beautiful daughter who will be 13 soon. so docs can give

me as many grim outlooks they want. i'll just keep doing the same thing i've

always done. i'll prove them wrong. did i mention i'm an unbelievably stubborn

polish woman, raised by an even more stubborn polish father in detroit (a city

full of stupidly stubborn people) and my astrological sign is taurus (bit bull

headed) LOL

well gotta go empty the current bucket for my daughter. hope everyone is having

a better night then she is.

blessings,

elizabeth

Subject: Re: EDS wish me luck ELIZABETH

Date: Monday, February 1, 2010, 12:42 AM

Oh Gosh ,

kinda grim.... when will you know for sure?

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