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Yuri: CREST Syndrome

You name it, I got tested for it.

It all started when I was twelve. For some reason, I have always been that one child who was always cold. Always bundled up in the blankets or wearing sweaters all the time. People just thought I was strange…me too, at one point.

When I was fifteen things got even more strange. My eating habits were not the same. I noticed I was eating a lot less, not because I wanted to, but it hurt every time I swallowed food or anything solid. It hurt my esophagus (throat) and my food would get stuck at times, so I ate less to avoid the pain. So I stuck with liquids and became a vegan for a while. I just put up with it and avoided certain foods.

Then at sixteen years old things continued to get worse. It was Thanksgiving week, two days before the big turkey and I got extremely sick. I started having terrible back pains, all down my spine and lower back. It hurt so much I cried because I could not move. I stayed in bed. The next morning I had strange red scabs that were over-dried all over my stomach and chest area and along my lower back, as well as a swollen lower back. This all came on very suddenly with no warnings and a terribly high fever.

By the time I got to the hospital, it was Thanksgiving Day. My family was with me in the hospital instead of having dinner at home. By that time my fever was extremely high! I was in the emergency room for what seemed like a long, long time. I was given antibiotics for the pain and fever. That was one of my worst days ever!

I was in the hospital for about two weeks, had all kinds of tests done: surgeries, ultra sounds, x-rays, cat scans, paps, blood tests for AIDS and everything else. You name it I got tested for it. Everything came back negative and I was finally ready to go home. It was now mid December and everything went back to normal except that I had to continue to see many doctors until I had a full explanation for my unexplained sickness. I continued to have my esophageal problem as well as always being cold.

At seventeen I ended up in the emergency room again. I had a terrible attack, which to me felt like a heart attack, but it was only a severe heartburn attack. I was referred to a Boise, Idaho, rheumatologist, who told me I had lupus. Lupus? I was seventeen and shocked. But I guess things happen right? So I was being treated for lupus for about seven months.

Three months before my eighteenth birthday I had a sore on my finger. Weeks later I had another one. Sores on the tips of my fingers. Now, I get cold easily and have mild arthritis, not Lupus symptoms. Anyway, I went to a different rheumatologist (my current doctor). She told me an entirely different thing.

Two months before my big eighteenth birthday, I have a new doctor and a new diagnosis. Turns out I do not have lupus. I had been getting treatment for something I didn't 'quite' have. Lupus is an autoimmune disease and so is CREST syndrome, my new diagnosis. This was different because it did explain the esophageal dysfunction, the coldness and discoloration on my fingertips which caused the ulcers and my extreme weakness. And let's not forget my other symptoms of rheumatoid arthritis, anemia and acid reflux. Was I gifted, or what?

Now, one month before my nineteenth birthday, I live with CREST Syndrome, rheumatoid arthritis, acid reflux and anemia. I take prescription steroids daily, and other prescriptions to control my heartburn, pain in my bones and for my ulcer outbreaks. I'll probably have to take all of these meds until the day I die.

They could never tell me how I got this. They said,"It just happens to the best of us. There is no known cure or specific cause, only treatment." (That stinks!) "It's not contagious. Don't worry. It's an autoimmune disease your body develops on its own."

But, oh well, things happen for a reason. God knows what he is doing, and my life is in his hands. So what if I have a shorter life span. And I might pass it onto my kids, or so they say. I don't know.

This is my crazy story. There is more to it. I just tried to recap the important stuff.

So to all of you with health conditions, God be with you.

To Contact the Author

Email: [email protected]
Story edited 06-08-07 JTD
Story posted 07-13-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
CREST Syndrome
Difficult Diagnosis
Digital Ulcers (Sores on Fingers)
Heartburn/Acid Reflux
Lupus Stories
Raynaud's (Cold, Discolored Fingers)
Raynaud's Stories
Rheumatoid Arthritis
Skeletal Involvement (Arthritis)

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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!

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