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Danie: CREST Scleroderma

When I was young I was sick a lot.

DanieI would love to share my story of CREST scleroderma, which I have been living with for over six years now.

When I was young I was sick a lot. My mom brought me to see the doctor frequently. All he had to say was "growing pains" because I was young. I would feel sick mostly in the morning and after a few hours would feel better. My parents always thought of it as an excuse to miss school. It all started with my hands. They would be swollen and turn white and blue in cold weather.

As years went on I kept feeling worse and worse. Finally I went to see my doctor again for him to do more tests. It was in 1998 that I was diagnosed with CREST scleroderma. When my doctor gave me the news I told him thank you! He was amazed at my response. I then said, "Well, at least now I know I am not losing my mind."

My family understood as little about this illness as did I. All I understood at first that it was like arthritis. Little did I know it was much more serious than that.

I was able to finish school with no problems and went to college. I even worked tough jobs with no problems. As years went on I was amazed at how it progressed. I was diagnosed with Sjogren's syndrome a year after being diagnosed for CREST. The pain was unbearable at times. I would start to miss more and more work. Then I got diagnosed with fibromyalgia. At first I thought it was just a way for the doctor to tell me I had pain. I took it as an excuse and thought he did not know what else to tell me. Come to find out it is a very serious illness as well.

In November 2002, I stopped working. I figured if I wanted a halfway decent life that it would be the best thing for me. That was the hardest part. I am hoping one day that I will be able to return to work.

At the beginning of 2004 I was diagnosed with acid reflux.

I have a lot of support from my fiancé and also my family and friends. I do have better days than others, but the support I get from everyone around me helps me get through a lot. Their support helps me realize that I am not necessarily living with this illness alone.

To Contact the Author

Email: [email protected]
Story posted 07-06-04 SLE

Story Photo: Danie
Story Editor: Judith Devlin
Acid Reflux
What is Scleroderma? Brochure

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

Go to Daniel B. Koch: Mixed Connective Tissue Disease with Scleroderma

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