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Barbs: Systemic Sclerosis, CREST

So, from the outset, my diagnosis took twenty years.

A Flower for Barbs by Shelley Ensz I suppose I always knew something was wrong. To my friends, I seemed to be a hypochondriac because every day it seemed like there was something new.

I was nineteen when I first noticed my fingers turning white. I now recognize that these were classic Raynaud's phenomenon attacks. I always felt so tired, and I seemed to suffer colds much worse than anyone else. I felt permanently run down. It was not until I married and became pregnant that I started to experience real problems. I was healthy all through the pregnancy, but soon after giving birth, my health just seemed to go downhill.

In 1995, I had a serious bout of pneumonia that never really improved. It led to asthma and breathing problems. I also had problems with my esophagus and found that eating became increasingly more difficult. A doctor once said to me, "I think you may have scleroderma," but it was not mentioned again. I suffered another bout of pneumonia in 1997, and again it took time to recover. The word scleroderma was mentioned yet again, and I even wrote the word down because I could not remember it.

In 1999, my symptoms became worse. I asked the consultant who was treating my swallowing problems what he thought was causing the symptoms. It was then he finally referred me to a rheumatologist. A simple blood test clearly showed the antibodies responsible for scleroderma. It was the year 2000; my diagnosis had taken more than twenty years.

I know I am lucky because I have limited involvement. But that does not mean the pain is any less. I cannot do the things I know I should be able to do. My eating has gotten worse, and I can only tolerate liquefied food. My weight has dropped considerably in the last year, three stones, in fact. My Raynaud's phenomenon is worsening and requires hospital treatment, especially in the winter.

I am always interested in other people's stories and journeys to diagnosis. I have a very supportive family in my husband and eleven-year-old daughter. I have everything to live for, and I am going to live it the best I can.

~ Update November 17, 2003 ~

I wanted to update my story since so many things have happened along the way from my diagnosis. First I want to say that I have never given up my positive attitude, or my faith that one day they will find a cure. I have met many scleroderma patients, both in hospital and, through a small support group which I now attend.

In the early days after I was diagnosed, I was very unsure about the future. I did not think that I was going to die or that it would eventually cause my death. I just knew if I remained positive and carried on with my life, I would be fine. So little was known about the condition, and I was passed around from one doctor to the next. I knew I had limited involvement so that kind of sounded okay as far as the disease goes.

I mentioned my positive attitude at the beginning and so far I have maintained a normal life, well, as near normal as possible.

I now seem to have cardiac involvement, but I cannot say for sure until I have a full explanation, which at present is leaving me in the wilderness a little. I have chest pain, and all my joints ache unrelentingly. I never have the pleasure of a full nights sleep anymore. My GERD is extremely bad, as is the pain around my ribs. Oh what I would give for peaceful uninterrupted slumber!

I have begun my menopause at the age of forty-three. I was not expecting that for a few more years to come. It is just another small problem to deal with. I cannot lift myself from the bath anymore, which is something I never thought would happen to me! If I kneel on the floor, I cannot get up. This is not real! I run out of breath when talking, and yawn constantly when singing and gasp for air. I sing in church with my daughter on Sundays.

What is happening to me? I do not want to be a burden, and I hate myself; as if I could do something about it. Yet I have met some extraordinary people. You never hear them moan, or complain. I think the disease chooses the people who can cope beyond all expectation, special people. And it takes special people to endure all that life throws in their path.

I admire all the people in this book, who have chosen to tell their story with courage, and detail. I hope one day when a cure is found, we can draw a line under scleroderma as a treatable curable disease, but until then, let us just hope.

To Contact the Author

Email: [email protected]
Story posted 1-25-02
Story edited V1 JTD 8-5-03
Story updated 11-24-03 JTD

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Cardiac Involvement
CREST Syndrome
Difficult Diagnosis
Pregnancy and Scleroderma
Swallowing Problems
Types of Scleroderma
Voices of Scleroderma Volume 1

Barbs: ISN Support Specialist

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!

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

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