My right leg and foot was smaller (a lot), but not shorter.  I had localized patches on the trunk and neck.  The right side of my face was tight.  It was like someone drew a line down the middle of my body and attacked the right side.  I lived a "normal" life until October of 1996.  I developed an ulcer on the instep of the right foot.  It was only the size of a pencil eraser but the pain was awful.  I usually have a high pain threshold.  I could not see how something so small could hurt so much.  A surgeon debrided the ulcer, but three weeks later we had to do it again.  This time was the same - the scleroderma would attack and harden the skin so much it still could not heal.  Then the first of May I was hospitalized. 

The pain was the worst.  The ulcers had spread to the whole foot and lower leg.  I had developed a staph infection in the ulcers.  When I came home we started with the home nurses.  I was on antibiotics by IV for 34 days.  The best medicine for pain was a combination of paid meds and anti-inflammatory drugs.   Now we were referred back to the dermatologist, who took one look and said I know what is causing this.  He put me on very high doses of blood thinners and told me they would start healing but it would be a very slow process.  I started doing a little bit better.  Then the rug was snatched out from under me again.  My kidneys were damaged from the anti-inflammatory medication.  The kidneys could not process right.  So no more anti-inflammatory medication ever again. 

A year ago this past January, I woke up one morning and could not hear. The ear specialist said that I had lost my hearing and it would be permanent.  They said the best they could figure is the IV antibiotic could cause hearing loss in rare cases, also one of the anti-inflammatory I was on.  Then they started exploring the possibility of autoimmune diseases causing hearing loss. Combine the three things together and my risk was very high for this to happen.  I did not take the loss of my hearing very well at all. Even after everything else that had happened in the past two years I think this was the worst (but no pain from it). 

After reading some of the stories on the website,  I feel that I am really lucky.  At least my lungs and internal organs are basically ok.  My husband has been my tower of strength.  He has supported me in doctors I wanted to try, taking care of the house when I was too sick and loved me no matter what damage and skin deformity I have.  I have two boys ages 9 and 10.  They also are my reason for pushing myself even if I am tired.  My parents, sister, extended family and friends have been the best. 

I am 43 years of age.  My symptoms are hardening of the skin, itching,  red rash on forehead, fatique, heartburn, cellulitis in lower right leg, ulcers,  hypothyroid,  fibromyalgia, 100% hearing impaired,  wheelchair confined and constrictures of the foot and toes.  My hobbies are crafts, counted cross-stitch, crochet, e-mail friends, reading and surfing the web.  I love the e-mail since I can't talk to my friends and family unless I go through the relay service on TDD.  This gives me a way to "talk" to them.  Best of wishes to everyone and may God bless all.

e-mail address:  youngdebo@yahoo.com      

 

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