Scleroderma and the Ordinary Girl

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…

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…

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…

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…

A very unusual event happened this week that prompted me to think hard about my role as a patient when I am being looked after by my main caregiver, my husband Max. Despite hardly ever getting sick, Max became very unwell with a nasty viral illness…

Disabled people are a minority group, as are those with rare diseases such as scleroderma. Just lately, I have read many anecdotal stories of people just like me being singled out, bullied and ridiculed, whether it be about our spotty facial…

A short time ago, I saw a foot specialist who, by all accounts, was well-versed in all aspects of podiatry pertaining to rheumatoid issues, and also had a particular interest in scleroderma. As my feet had been in agony because of loss of fat in the…

There have been times when my spirit just feels broken by scleroderma. It is hard to feel grounded when I am tired, in pain, and feel unwell and frightened about my future. Scleroderma’s presence in my life is so overwhelmingly relentless that it breaks my…

When I was in my 20s I was one of the very first people go bungee jumping here in New Zealand, when AJ Hackett operated from a tiny caravan set up by the Kawarau Bridge in Queenstown. I went with a very close friend and we…