Caring Voice Coalition will be closed Monday, May 29 in observance of Memorial day.
We will reopen on Tuesday, May 30 at 9a.m. ET.
In 1997, when I was 49, I got up one morning, showered, and got dressed … almost. I tried to put on my shoes, but found that my feet had swollen too much overnight to fit into any of them. I called my doctor, who thought I was retaining water, and gave me a diuretic. It didn’t help at all.
He referred me to a rheumatologist, which was a good start. Unfortunately, though, the rheumatologist was to retire in three weeks, so he wasn’t too invested in me. He told me that I definitely had some “auto-immune process” going on, which might take several months to sort out, but that the treatment would initially be one that was usually used for cancer, and told me to “take it or leave it.” I decided to leave it, and to tackle the issue holistically.
This led to my second unfortunate event: A doctor I pursued, who had received extensive media coverage, turned out to be a quack. It took me about 18 months to come to grips with the fact that I was slowly getting worse. I was now unable to step off a curb unaided, or to dress myself without assistance.
Dry, darkened, shiny, and tight skin covered my face, arms, hands, and legs up to mid-thigh. My fingers were slightly curled, and I had six finger ulcers on the three longest fingers of each hand, which made using them to do almost anything nearly impossible. Raynaud’s syndrome, one of the most frequent scleroderma symptoms, caused my fingers and feet to turn purple when the temperature changed from cool to warm, or vice versa. I experienced acid reflux so intense that I learned to fall asleep in a recliner every night. Every joint in my body ached, and it hurt when I got into bed.
I used to teach elementary school. When I first got sick, school had been in session for about three days. I struggled to make it to winter break by taking a sick day every Wednesday, and sleeping (and eating a little) between Tuesday evening and Thursday morning. Every Thursday I would cry as I got ready for school, because I didn’t know how I could make it to the end of the week.
Finally, in February, 1999, I was referred to a great rheumatologist with a background in scleroderma. I walked into her office, and she told me as I was sitting down that I had systemic scleroderma. She started me on the treatment that the first rheumatologist had initially proposed, as well as different medications to help relieve reflux symptoms, soften my skin, and ease the pain. I slowly started to improve. I no longer have finger ulcers, and for no apparent reason, my hands stabilized, with very little curvature to my fingers.
Because I have systemic scleroderma, all the extra collagen my body produces has to go somewhere. It goes into a lot of my other body systems—my heart, lungs, skin, and gastrointestinal tract seem to be getting a lot, judging from the assorted problems I’ve dealt with over the ensuing years. One is the facial deformities that can occur as the skin starts to relax. It can cause the lips to almost disappear and small lines to form around the mouth, often referred to as “purse-string mouth.” I’m still surprised when I see a photo of myself, as I only recognize my face through my eyes and nose.
It is estimated that approximately 25 percent of scleroderma patients will develop pulmonary hypertension. I fell into that group. I am fortunate that I am presently able to treat my PH with oral medications. Many of my fellow patients must be hooked up through a subcutaneous line to a pump that they wear 24/7. I pray I won’t ever have to experience that, but only time will tell.
I no longer teach school. My last day was that winter break in 1997. I wanted to continue being productive, so, once I felt a little better, I got a Little Sister in the Big Brother/Big Sister program. I am still in touch with her today. As she got older, I joined an adult literacy program, through which I have taught and mentored a woman from Africa for about eight years now. I am also the support group leader of the pulmonary hypertension group in Tucson, and the co-leader of the scleroderma group. Helping other people makes my struggles more worthwhile.
Did you enjoy this story? Email us your comments and questions and let's keep the conversation going. We encourage you to engage with us and other readers by following us on Facebook, Twitter, Instagram and Pinterest. Every person's journey is unique, and every perspective is valuable to us.