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Rachel: Morphea
I have learned to control the use of addicting medication and to manage the pain as well as possible.

Swallowtail Butterflies for Rachel, by Ione Bridgman, ISN Artist 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.

To Contact the Author
Rachel
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
LINKS
Cancer and Scleroderma
Morphea
Radiation and Scleroderma
Scleroderma
ISN Artist: Ione Bridgman
Ione Bridgman ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our  Voices of Scleroderma Book Series .
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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