My health problems go a long way back. Almost twelve years ago, in 1988, I experienced an influenza that I just could not shake off for over a year. I was eventually admitted to hospital and when blood tests did not show up anything sinister, I was diagnosed as having the ME Syndrome or CFIDS as it is also known. I became severely ill and for at least a year I needed the use of a wheelchair.
Two and a half years ago I attended an ME support group meeting where the Celiac condition or gluten intolerance was being discussed, and decided to put myself to a test for the condition.
I soon realized that I was definitely made worse with gluten products and immediately ceased having anything containing flour, oats, barley and rye. The improvement to my health was very noticeable although I was still far from well. I have continued to do without these products in my diet. At least I no longer have need of the wheelchair.
About four years ago I was diagnosed as having Sjögren's Syndrome, Raynaud's Phenomenon and fibromyalgia. Then two years ago I suddenly developed very painful lips and noticed that I could not stretch my mouth without great difficulty.
A rheumatologist diagnosed me as having scleroderma even though blood tests had not revealed anything. I was also experiencing severe problems with my esophagus and tests showed up as dysmotility and severe reflux problems.
I have very few visible signs to indicate that I in fact have scleroderma. My 'draw string' mouth and dry, itchy skin are my only visible signs, but for me the important thing was that I was believed and I also had a name for what was going on with me.
In June 1998 I developed a very severe lung infection, and fibrotic lung disease was diagnosed. It was at this time, that systemic scleroderma was confirmed by a pulmonologist. This year March, my feet and legs swelled up and congestive heart failure was also diagnosed. Apparently this latest problem is connected to the lung disease.
I consume a handful of pills twice a day for diabetes, esophageal problems, neuritis, low thyroid count, Meniere's disease and other problems. I am on a low dose of cortisone for the lung disease and this appears to be helping me considerably at the moment.
But despite all, I try to remain positive, and take each day as it comes. I realize that there are others with Scleroderma who are far worse off than me.
New email address needed 08-22-06 SLE
Old Email Prefix: jelston
Story Posted 1-20-00
Story Artist: Shelley Ensz
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
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