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Johnny: CREST Scleroderma

My finger was dead so they finally chopped it off.

For Johnny by Sherrill Knaggs, ISn Artist I am a thirty-nine-year-old white male and single father of a brilliant ten-year-old boy. Once upon a time I was also a Wireless Telecom engineer and a Gulf War Vet.

The onset was in 1995. As of 2003, I have just won the fight to save my left foot. I spent the previous year and half fighting to save my big toe, but it had to go, because the pain was so unbearable. The infection had moved into my foot. After repeated surgeries to clean the debris and the wound area where my big toe used to be, it finally came down to the surgery.

Finally Dr. Fred Meyer, Professor of Orthopedics at the University Of South Alabama Hospital, and his team, managed a successful skin graft and the area has healed completely.

I found that quality of life soon becomes very important in decision-making, when there is so much immobility and pain. Since 1995, I have also lost most of my fingertips. Early on, before they diagnosed scleroderma (which took four years) the GERD had caused so much scar tissue that I had to have laser surgery on my windpipe to widen it back to normal.

On a daily basis I still fight the pain from rheumatoid arthritis, stomach upset and irritable bowel. It is difficult just doing daily living tasks like dressing, brushing teeth, folding clothes, or walking without all the tools God gave me to start with. Then there is the occasional depression and psychological symptoms of how this really affects my life and relationships.

Then add on the physical aspects of learning to live with pain and deal with the side effects of the drugs. And let us not forget the financial burden with trying to live on fifty percent of salary for six months, if we are lucky to have a disability plan at work. And also learning how Social Security pays out, fighting with disability insurance plans, and having to renew it every two years, as if my 'stuff' is going to grow back!

I am blessed to have been given the mental capacity to deal with these challenges. I am sure many others give up, and as we know, stress is a large contributing factor to the cycle of this disease.

My first symptoms started in 1995 after I moved to a colder climate from living fifteen years in a warm one. My left middle index finger seemed to have developed a nail fungus-type infection. It would heal then the infection would come back for several months. Finally it got worse and I could tell it was not healing. The doctors really did not have a clue about scleroderma at that time. They only mentioned that I had Raynaud's. They ran test after test and still nothing. I finally lost my finger halfway down because they were really uncertain as to what was the problem.

"Quit fixing the symptoms," I said, "and fix the problem!" My finger was dead so they finally chopped it off. Since that first onset, most of my problems come from injuries, which would heal in a matter of days for most people, but did not heal for me.

I now live in the deep south for the warm climate. However, I still have problems, but not near as bad as when I lived in the colder area. I have a huge family, but nobody else in my family has anything like this disease.

Using my own research process I scanned the internet. To my intrigue I found that CREST is well documented and that scleroderma is often triggered by environmental exposures to toxins, but nobody will back it up. . When I looked at this list it all became clear for me. Many of the solvents I used to clean the electronics equipment on Jets during the seven years I was in the Navy back in the 1980's and during the first Gulf War, are now listed as the "Super Fund Top Twenty Toxins." The main solvent I used that had no prescribed safety precautions was trichloroflouroethylene, which is basically Freon® in a spray can. The more research I did the more positive I am that this is my 'scleroderma trigger'.

Much of the information is above my head, but as an engineer I am pretty well educated and know how to add 1+1=2. Too bad the Veterans Administration (VA) does not use the same math. I have been battling with them for three years.

I have learned some valuable information from the onset of my disease. We should not let the health care system run us. We are paying the bill so we should make sure we get what we want and deserve. If we do not see eye to eye with our doctor, we should get another doctor! We can also call our congressman and senators. They have special liaisons on staff to help get our benefits in order.

We learn who our friends are very quickly when we are ill. If we have tried to move along in relationships and run into brick walls, it is probably not our fault. Sometimes it is a shame how vanity and money often matter more to our significant other. No wonder the divorce rate is fifty percent and climbing. If we are not like "Ken and Barbie" or we mention the "divorce" word, we might as well swim up the creek without the paddle. There should be a singles dating service for those of us with this disease. Hope this helps.

To Contact the Author

Johnny
Email: Withheld by request
Story submitted 5-17-03
Story posted 6-4-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Causes of Scleroderma
CREST
Gangrene and Amputation
GERD
Irritable Bowel
Raynaud's
Rheumatoid Arthritis
Scleroderma
Skin Involvement

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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