My scleroderma story started in 1973 when I was sixteen years old. I was a track star in high school and noticed that I was slower and my body felt tight all the time; nothing specific, just stiffness and lethargy. After a while the puffiness in my fingers started. The diagnosis of scleroderma was correctly made when I was seventeen.
I choose not to dwell on the utterly devastating effects of this disease, but I can truly say that I have at some point experienced every one of the symptoms of systemic scleroderma. What has sustained me are my faith, good doctors, family support, a sense of humor and working as long as I could. I also had to change my definition of “normal” hundreds of times over the years in order to keep my sanity and maintain a decent independent lifestyle.
With tremendous support I finished high school when I was twenty-eight years old, because between the ages of seventeen and twenty-seven I was too sick to do anything significant. After high school I went on to college and graduate school, and worked as an accountant for twenty-two years. I retired in 2010, because I couldn’t do it anymore, and the year before I was diagnosed with pulmonary arterial hypertension (PAH) as a result of the scleroderma.
I will be sixty-four years old in September, and I would describe my health as poor. My biggest problems are fatigue and worsening constipation. However, I enjoy volunteering at my local library, my union and my church. I go to the gym two times a week and babysit my niece for four hours every weekday. I love bus rides, off-Broadway shows, reading, watching documentaries and traveling. I participate in these activities often, whether or not I am feeling well.
I hate this disease. It’s devastating, nasty, horrible and debilitating and I am well aware that it can kill me, especially now that I have PAH. I cannot control life’s circumstances, but I choose to see the glass as half-full and take charge of what I have control over. I truly believe that one can live a successful life, despite the diagnosis.