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Elizabeth House: CREST Syndrome

I am tired of always having to say, "I'm sorry, I can't."
Paper Flowers by Shelley Ensz I am forty-three years old and have had CREST Syndrome for the past thirteen years. I have two little girls and a wonderful husband who has helped me through this.

I have spasms in my back, throat, and legs. I find it very difficult to eat, and difficult to do all the simple things like riding a bike or even walking, and when I try to do these things, I am in horrible pain for days.

I find it hard to help people understand what it is we are going through because they can only see the outside, which looks good, but it's the inside that is really falling apart. I am tired of always having to say, "I'm sorry, I can't," or "I'm sorry, I just do not feel well."

I would like to be able to talk with anyone who is going through the same thing that I am and find out how you handle this. Who knows, maybe we can be uplifting to one another as we journey through life with the horrible thing called scleroderma.

To To Contact the Author
Elizabeth House
New email address needed 08-06-09 SLE
Old Email Prefix: Tinkerbelle2323
Posted 6-16-99 SLE

Story Artist: Shelley Ensz
LINKS
CREST Syndrome
What is Scleroderma?
Types of Scleroderma
PDF Brochure: What is Scleroderma?
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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