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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
Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success...
Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue...
Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye...
Angela R: Linear Morphea Scleroderma I am twenty-five now and only have the two spots that I deal with pretty easily. I just hope it doesn't get worse...
Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen...
More New Stories: May-July 2010
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