After years of complaining about various symptoms to doctors, I was diagnosed with diffuse scleroderma in 1993.
My family doctor stated that he was not qualified to treat me and sent me to a research and teaching hospital for treatment. The rheumatologist and dermatologist that treated me were wonderful in trying to explain to me all of the symptoms of scleroderma.
Within the first month of diagnosis, the tight, shiny skin appeared on my chest, belly, upper legs, arms and face. I was placed on D-Penicillamine in hopes of slowing the progression of the disease. I was also placed on an antidepressant, something for the acid reflux, pain and anti inflammatory medication. My disease progressed rapidly. Within months it became difficult to walk due to muscle weakness and fatigue. My hands were so swollen it hurt to grip a pencil. I was devastated because I was a school teacher. I could no longer go outside for recess because of the Raynaud's.
I had a severe reaction to the D-Penicillamine and had to be taken off of it. The rheumatologist then placed me on Methotrexate. I tolerated it well but after one year decided to quit the Methotrexate as I had mouth ulcerations and had dropped weight.
I went along well for the past four to five years and even thought I had the major organ malfunction beat. This past week, I found out I am in partial kidney failure. Through careful monitoring of my blood pressure and medication, I hope to avoid dialysis.
New email address needed 01-24-05 SLE
Old Email Prefix: sansundquist
Edited 03-23-04 SLE
Story Artist: Shelley Ensz
Ineffective Treatments: D-Penicillamine
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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