I have recently been given a name for all the problems I had been having for the past five to six years. I finally got assigned a wonderful rheumatologist and have been diagnosed with scleroderma (as yet of an unknown kind).
I usually like to be called just Pepper, since it kind of describes the way I mostly feel these days. I am a technical writer, based in Texas, and I volunteer as an ISN Story Editor to prepare stories for placement on the website. I have continued to work, but it does tend to get tough sometimes, juggling work, doctor appointments, and my kids' schedules.
What I find really frustrating is not being able to get a diagnosis of what type/combination of disorders I have. The ISN website was a boon in that it was my ultimate reference in the initial stages of my diagnosis when I went through the first battery of tests. At every stage of my illness I am able to come back here to understand more of what I increasingly have to deal with. And it really helps to know as much as possible about this confusing disorder!
My rheumatologist says its still developing, so I am being treated symptomatically. I have Gastric Reflux, carpal tunnel in both hands, severe joint and muscle pain and inflammation, fatigue, costochondritis, oral ulcers off and on, and now my joints/knuckles are on my hands are slowly beginning to get big and painful. I am taking Plaquenil, Enbrel® injections, Prednisone, Nexium and a variety of inhalers for my wheezing.
I have two game plans for any given day. I have my good days when I can do almost anything, like I could before. And then there are the bad days, and this is when my wonderful husband takes over and becomes a mom to my kids, runs the house for me and humors my endless crib fest! God I love him!!
I have come to terms with what I have been dealt. I have seen a first cousin go through the same ordeal, back home in India, but without any definitive diagnosis until it was too late. So I feel blessed that I am here in the US where it was identified and treated at an early stage.
In October 2003, I decided to put to use my experience with Macromedia Dreamweaver by becoming an ISN Assistant Webmaster. I am eager to learn the intricacies of maintaining and developing this website. I also helped with the desktop publishing for ISN's Voices of Scleroderma Volume 2.
I have retired from active ISN volunteering in order to teach school full-time now. I have found being positive and prepared for the worst helps me deal well with whatever I might face today.
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See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
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SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: