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Mike Thomas: Diffuse Scleroderma

My hands are all curled up and I type with one finger.

Allegheny Mountain for Mike by Shelley Ensz I am a shy person who lives on one hundred acres of wooded land in the Allegheny Mountains. I am going to make this short, but I could write ten pages.

I was diagnosed with scleroderma in 1988. Every day is an uphill struggle.

I have to go to a Veteran's Administration (VA) hospital because that is the only insurance I have. At the VA I am treated like a live cadaver. The student doctors have tried everything on me. It is to the point, since I go to a small VA, that the doctors keep passing me around saying that I am too complicated for them to treat. So nothing gets done.

My skin is so hard, that when an intravenous (IV) needs to be started, the needle bends. I have so many things wrong with me. I willl list a few. My bladder was cut out, down to the size of a walnut. I have large open sores on my left side and have had six skin grafts. Twice, they took some skin from the top of my head and that hurts.

My heart beat test showed long spikes on the bottom line and I was told that that is normal for a scleroderma patient. My intestines are almost flat. I had polyps taken out six years ago and never had a follow up. The last endoscopy on my bladder was three years ago when I was told I had cancer before the bladder surgery. So now I have a super tube (catheter) coming out of my side. And there is so much more.

I am a fifty-three-year-old Vietnam combat veteran, who was exposed to Agent Orange. I also have degenerative arthritis and so many more health problems. My hands are all curled up and I type with one finger. I never smoked in my life but I have a hard time catching my breath. It feels like there is a big mass under my lungs. I think it is because of the Agent Orange gas.

To Contact the Author
Mike Thomas
New email address needed.
Old Email Prefix: jmtreefarm
Story submitted 6-11-02
Story posted 6-27-02
Email note posted 01-19-05 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
Bowel Involvement
Cancer and Scleroderma
Cardiac (Heart) Involvement
Diffuse Scleroderma
Digital Ulcers
Interstitial Cystitis (Bladder)
Pulmonary (Lung) Involvement
Sclerodactyly (Curled Hands)
Scleroderma
Skin Fibrosis
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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