Living with scleroderma means constant cycles of specialist consultations, and I like to keep a diary to document each visit. While updating my dairy, I started to think about everything I’ve learned from my tenuous relationship with the medical profession. Especially since I had to…
Social interaction is necessary, for most of us, to thrive in life. From childhood on, many bonds are formed in school, church, a workplace or social gatherings. Strong connections are forged from similar personality traits and common interests. As time passes, a flower of friendship is watered with good…
Stiff, bent, inflamed-jointed fingers do not do the best job of getting my shoes on, even though I have no open wounds from calcinosis or ulcers at the moment. Grappling with shoelaces is not easy with my scleroderma fingers, and bending over to…
New beginnings in life tend to bring a sense of hope and excitement. A new relationship can have a couple swooning over each other for the first few months, then hating each other the next. You can find a new favorite flavor of…
Here in the United Kingdom, summer is gradually transforming into autumn. The decrease in temperature can be seen by the change of color in the leaves, as well as a change in color to my fingers and toes. Even on a hot summer’s day, I struggle to maintain…
Living with a chronic disease such as systemic scleroderma brings huge changes, and my life is different from what it was like before diagnosis. These changes generally happen over time, matching the disease progression. For some people, their changes are noticeable and they are aware…
Systemic scleroderma is a nasty disease with many complications that make my life difficult. Because of scleroderma, I have to endure diagnostic procedures, pain relief management and am required to take many medications. People often sympathize with me, but sympathy and empathy are different things, the latter…
“You should get out more.” These words of advice were recently given to me by a friend, a non-scleroderma patient. I am sure this friend meant well. But on the cusp of my 20-year anniversary since my initial diagnosis, I…
At our most primal level, we all just want to fit in and be accepted. As a kid with pink and purple broken capillaries (called telangiectasia) sprinkled generously all over my deformed arms and legs, blending in with the crowd was no easy task. I’ve encountered lingering glances…
Just the other day someone asked me about scleroderma. During our conversation I explained that I needed to have esophageal dilations regularly so I can swallow food without choking. After hearing about this procedure, the person commented about how brave I must be. This is a…
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