Thursday, November 29, 2007

Wednesday, November 28, 2007

Finally--a probable diagnosis for my health problems

finally!! a probable diagnosis for what ails me.. I don't want to complain so i try to keep my troubles to myself {despite what some people may think}. I have been having some real problems with my eyes (dry, infected, painful) and a really dry mouth ( so dry that my lips stick to my teeth when i try to talk), dry skin, extreme fatigue, skin discoloration and some itching. The neurologist (I see for migraine and sleep apnea) has ordered numerous sleep studies because despite my c-pap being set correctly because i remain exhausted.
A while back I was talking to a friend at work and she said "gosh. that sounds just like Marie _ _ _ _. she has sjogrens disease and she has a lot of the same symptoms". now keep in mind that i have been telling my PCP for a long time that there is something wrong with me--- i just don't feel right. He has poo-poo'ed me for several years and i felt he thought i was a hypochondriac. Anyway Marie printed out a list of the symptoms of sjogrens---out of 52 symptoms i had about 32 of them.
So with paper in hand and the previous discussion with my opthamologist in hand--in my eye problem post earlier---I trotted off to my PCP again. I showed him the list and explained to him the whole thing and insisted that he test me for sjogrens, rheumatoid arthritis-- something-- and got them to take some blood for these tests.
anyway -- trying to get to the point here-- on Oct 26, 2007 my friend Sandy from the office called me at work to tell me the labs were back..... I could tell there was something wrong by the tone of her voice. Her exact words were 'well, here is the good news you don't have sjogrens." i said well that is good i guess-- i paused and said "wait, i can tell by your voice something else has shown up-- tell me" . The reply she gave me was something i could never have anticipated ..even though i have mentioned it in a previous blog. the words i will never forget and that have changed my life were what she said " your SCL-70 was positive'. being a nurse i sorta knew what was coming but still have a hard time saying it---she said "SCL-70 is the test for scleroderma".
OK-- so long story short is that i have a 98% chance that scleroderma is my diagnosis. What the heck is scleroderma?? It is a auto-immune connective tissue disease that is pretty rare (14 in 1 million people have this and of that number 3/4 are female usually aged 34-52--only about 300,000 people worldwide have this). Literally Scleroderma means "Hard skin"--according to which type of scleroderma you have the course of the disease is really wide.
according to some of the information i have found-- the prognosis for the worst kind and worse case scenario is surviving 2 yrs. Most people do not fall into that category- some of the other info is that the average life span after diagnosis is more like 20 yrs. But-- heck even at 20 yrs i will only be 68 years old!!! that is getting younger by the day. But, and this is a big but, we don't yet know if this IS my diagnosis (really hard to diagnosis) or what form i have, what effects this has already had on my body (usual time you have had disease until diagnosis is 3 yrs because it mimics so many other things). i have an appointment with the specialist at the end of January--so i guess we wait some more.
anyway-- if you think of it say a prayer for me, for my body,(not only is the skin effected but often the real problems are with lungs, heart, kidneys and guts getting sclerosed-- and not able to work correctly) and my family and my mental health as we all learn to deal with this devastating diagnosis.
here is a web site for the scleroderma foundation if you want to learn more- -

if you have made it all the way through this -- i want to say a special thanks to you

Monday, November 19, 2007

hi there (if anyone ever reads this LOL)
i am in a OK news, bad news kind of situation. i have found out the root of all my health problems... the OK news is that now i know what is wrong.... the bad news is that it isnt something i would want to have-or want anyone else to have. It is one of those "orphan" diseases--something rare that only affects about 14 in 1,000,000 people (yep that is is 14 in 1 million) most of you will have never heard of it --when i tell you what it is. i have to wait to tell you until i tell my family which will happen this weekend.
anyway--- IF anyone is reading this and feels the need-- i would appreciate any kind of prayers or good thoughts you would care to send!