My name is Rachel and I am forty-six years of age. I am the mother of four children ages thirty, twenty-nine, twenty, and eighteen. I also have four grandchildren who are ten, nine, four and three years of age.
In June of 2001, I noticed a bruise near my belly button about the size of a quarter. Within the first year the bruise turned into a horrible mass. The outer edges are dark in color and the center turns from white to dark purple depending on its growth periods. Now the bruise is five inches in diameter and growing.
At times, when it seems to be in a non-growth period, it lightens in color. Then when it grows in size the color darkens. I was diagnosed with scleroderma after I saw a surgeon who first thought I had melanoma but the results of a biopsy found that I had scleroderma.
I have had a thyroidectomy followed by radiation treatments due to cancer. Then I had uterine cancer that was treated with a hysterectomy and chemotherapy treatments. After seven years I have been free of cancer only to be now diagnosed with morphea which is incurable and very painful to live with.
In 2001 I saw a dermatologist, rheumatologist, and a plastic surgeon. A few doctors that I have seen have had little or no knowledge of this illness at all. Those doctors actually learned of my disease from the knowledge that I gained from the Internet.
The worst part of my illness is the pain associated with arthritis caused by the hardening of my joints and muscles. And now in July of 2003, I have lost the ability to turn my neck completely in either direction. My left wrist has lost strength and mobility. My right knee is twice the size and the ability to bend it is very limited.
I recently found a bruise-like mark on my right breast which required a mammogram due to the mass accumulated under the bruise. The mammogram and ultra sound found the mass to be a cyst, which will be watched very closely. I also have the same bruise-like marks on my right arm above the elbow, on my right leg below the knee, as well as a new dime-sized one above the morphea that is already on my stomach.
After reading about others who have the different forms of scleroderma, I am thankful for having the growths where they are and not visibly on my face or hands.
Last winter was very painful for me and now with the spreading of these masses, I fear the winter that lies ahead. During my first year with morphea I got addicted to the pain medications that only added to my dilemma. Now in my third year with this disease, I have learned to control the use of addicting medication and to manage the pain as well as possible.
I have always taken a lot of pride in my appearance and after years of modeling and public appearances, I have resorted to life at home. I have found myself unable to be comfortable in front of people and that worsens as the illness spreads.
I could really use the advice or even just information others have gained from their personal battle with scleroderma. You may contact me by e-mail.
New email address needed 08-06-09 SLE
Old Email Prefix: mynana4x46
Story posted 10-31-03
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
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