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Val: Systemic Scleroderma
I am afraid to find out too much about the disease because I do not want it,
but I do wonder what is going to happen to me next.

Flowers for Val by Shelley Ensz I am Val and I was diagnosed in June of 2001 with Systemic Scleroderma. Actually, I was diagnosed on my birthday, what a present!

I guess I just wanted to be able to write about the disease so that others may know how it all started with me.

Scleroderma, what is it? I still do not know for sure. I do know that since I have been labeled with it my life has changed drastically.

Once diagnosed, I had to begin taking a regimen of different drugs. The effects made it necessary to take a two week leave from my job. When my employer found out what I had, he moved me and changed my job. When I went back to work I was told that I no longer had my job, as it had been given to someone else. People acted as if they were afraid of me. Even my closest friends and family weren't sure how to treat me. Why? So far I do not look any different or act any different.

I think that people are afraid of me because they do not know what it is. This is how I feel also. I am afraid to find out too much about the disease because I do not want it, but I do wonder what is going to happen to me next.

I have scleroderma in my esophagus. It causes me to vomit a lot. My skin is getting tighter and my hands hurt. I feel tired a lot and I hate taking all of the medications. Why so many drugs? They tell me it is to slow the disease down; how do they and I know if the scleroderma is slowing down? It seems as though it is gradually getting worse but I am not sure. I do not know what and how I am suppose to feel.

My husband seems to have very mixed emotions about how to handle my disease. He tries to keep me upbeat, but he does not like to hear about the pain and how I am feeling. He says that all I think of is the disease and when I am going to die.

Well, this is enough to start with and I will update later.

To Contact the Author
Val
New email address needed 01-20-05 SLE
Old Email Prefix: valeriejo100
Story posted 3-23-02

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
Esophagus
Types of Scleroderma
What is Scleroderma?
PDF Brochure: What is Scleroderma?
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
ISN's Voices of Scleroderma Volume 2
The story on this page is featured in our book, Voices of Scleroderma Volume 2 ! International Scleroderma Network.
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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Go to Valeria: Systemic Sclerosi
 
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