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.
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: