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Iceback: CREST or Limited Scleroderma

I am on a roller coaster of fear, depression and confusion.

R. Tucker Thompson by Sherrill Knaggs, ISN Artist Two weeks ago, after seven years of a very severe case of Raynaud's, I was diagnosed with scleroderma. My rheumatologist said I have CREST or Limited Scleroderma and to come back and see him in two months. I originally went to see him for what I thought was a complication from the Raynaud's, an infected ulcer on the end of one finger.

Never having heard of scleroderma, I never really asked any questions when he told me and went home to look it up on the Internet. Well, I certainly found a lot of information and do not really like what I found. Now I am having a hard time thinking about anything else. After reading about some of the symptoms, I have discovered a few things that I have had for years like, heartburn, problems swallowing andred dots on the palms of my hands that may all be related to this disease.

I am a thirty-seven-year-old man with a wife and two very young children. I rarely ever missed a day from work on the local auto assembly line. My wife and I have long term goals and plan things out well in advance. We try to do all the responsible things like retirement and education planning. Now my world has been rocked. I missed eight weeks of work and do not really know if I will be able to continue, or for how long, with the type of work I have done since I was eighteen.

I feel like I have run into a wall at this point and am looking for a door that will let me continue on with my life as I planned it. I have made an appointment with anotherrheumatologist who specializes in scleroderma, but will have to wait another ten weeks for that.

In the meantime, I am on a roller coaster of fear, depression and confusion. What a ride.

To Contact the Author

New email address needed.
Old Email Prefix: iceback99
Story posted 9-27-02
Email note posted 01-19-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Difficult Diagnosis
Limited Scleroderma
Red Dots (Telangiectasia)
Reflux (Heartburn)
Digital Ulcers

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!

Go to Iko H: Limited Systemic Sclerosis

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