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Rose: Diffuse Scleroderma

My rheumatologist said, "If you do not lose the weight it will be like hell on roller skates," and ignored the fact that I had elevated tests even at that point.

Floral Arrangement at Galleria, by Shelley EnszI was diagnosed with scleroderma in January of 1994. I was thirty-two years old at the time. My symptoms started when I was cold or stressed. My hands would turn purple, almost black. I also had a wound on the top of my index finger on my left hand that would not heal, and it was very painful.

I went to the doctor then not only because of my hands, but because I had a cold that I was nursing for three months. I was getting frequent nosebleeds that were pretty intense.

My family doctor did some blood tests and found my ANA and Sedimentation rates were elevated. He suspected scleroderma. He referred me to a doctor I had seen fifteen years prior, a rheumatologist who treated scleroderma patients, or so he said.

When I was sixteen years old, I had surgery to remove an ovarian cyst the size of a basketball weighing in at eighteen pounds. It was after this surgery that I developed swollen hands that ached constantly. This progressed to all the joints in my body, and this rheumatologist said, "If you do not lose the weight, it will be like hell on roller skates." He ignored the fact I had elevated tests even at that point. He was not able to help me this time, either.

I was very scared, as my hands were getting worse. I was having a hard time breathing, and I felt miserable all the time. Then I located my current doctor, a rheumatologist who specializes in and conducts research in scleroderma right in my city. A godsend! He has helped me more than I can say, not only through his obvious knowledge of the disease, but with his compassion and humanitarian qualities! He has treated me successfully for the lung involvement. I was put on chemotherapy for two years and my pulmonary function tests (PFTs) are back in the normal range.

My situation includes vascular involvement, and I have fought ulcers on my fingers throughout the entire illness. My first severe ulcer finally healed after a year. I was not so lucky with the next ulcer. It had advanced such that the nail fell off, and the first third of my finger was covered with a mere sheath of skin that was black and becoming gangrenous.

I was working at the time as a veterinary technician for a busy emergency clinic with animals that really did not care if it really hurt when they smashed your hand against the treatment tables. After trying for a year and a half to get the finger to heal, the decision was made to amputate. The pain that kept me up in tears all night, every night, was finally gone. Yes, it took some time to get used to the finger being gone, but let's face it, the finger was never going to be the same anyway.

I have had other trials and tribulations that have lead me to conclude that working like I was accustomed, was no longer possible. I have filed for disability. I keep busy with other activities, including working out at the spa four or five times a week.

I have found some time for me now and with the Lord's help, my life is heading in a new direction. I will accept what comes and learn to live with it as we all do. I wish all of you the best.

To Contact the Author

New email address needed 09-14-06 SLE
Old Email Prefix: gme1petsit
Story posted 6-4-99
Story edited, links added 6-30-03
Story edited V1 7-30-03: JTD
Story edits posted 8-5-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
ANA and Sed rates
Diffuse Scleroderma
Lung Involvement
Ulcers on Fingers
Vascular Involvement

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!

Go to Rose M: CREST Syndrome

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