Every morning I am woken early by my husband, Max, brandishing a cup of tea and some toast. My body is always stiff, sore and swollen. I am unable to do very much until I’ve eaten something so I can take my pain relief medications.
There is a magical period of peace every day in everyone’s life, a brief time when we can completely let go and forget our troubles. This beautiful escape is called sleep. It’s the only time we are completely unaware and able to unplug our brains. Sleep is one…
Sunday, Oct. 1, was the start of #RaynaudsAwarenessMonth 2017. As scleroderma patients, we know all too well how debilitating and painful the symptoms of Raynaud’s can be. In addition, the symptom control of the added extras, caused by a lack of blood supply in the scleroderma patient, include…
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…
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