I think the world would be a far better place if people could do two simple things: Ask for help when they’re in over their heads. Admit when they’re wrong and adjust their behavior accordingly. I’ve lived with scleroderma for more than 32 years and still struggle with swallowing my…
My rheumatologist refers to my fatigue as being “profound.” Most days I can’t think of a better word to describe it. Let me share a typical day with you. I’m sure chronically ill people who struggle with fatigue can identify with some of these things. (First, a disclaimer: The following…
I think about skin a lot more than most white people. I know that’s a really weird statement, but it’s true. Because my skin looks so different, I am quite aware that my skin influences how people perceive me. Having been diagnosed with scleroderma at age 10, I’ve grown accustomed to people…
“If you didn’t have scleroderma then you’d be a normal Mum, aye?” Our youngest was making a comment about how he loves going for bike rides with his Dad, and wished I could come, too. In the same conversation, he talked about missing me at the latest school sports afternoon,…
Having lived with scleroderma since I was 10 years old, I’ve grown accustomed to being asked intrusive questions about my appearance by random strangers. I’ve developed a pretty thick skin (pun intended) over the years, but there are still four seemingly innocuous words that continue to hurl me into a…
A few weeks ago, I went to my local hospital for a skin biopsy on the red lump that had developed on my forehead over the course of the last three years. To have lived with a diffuse scleroderma diagnosis for 19 years, and to have not had to have a…
Yes, scleroderma certainly has affected my self-esteem in many ways. But help is at hand! This weekend there was a big sale at our local “everything” store. You know those stores, the ones that have all manner of household items, from computers to washing machines. We went to buy a new bed…
Stretch marks, belly flab, a double C-section scar, dark circles under my eyes for the next 18 years: the postpartum party gifts I was expecting as I was wheeled in for a scheduled C-section in 2006. It wasn’t my first rodeo: I’d had a C-section three years prior and, as…
October is Raynaud’s Awareness Month. However, for Raynaud’s patients, everyday, whatever the month, is a Raynaud’s day. There is no cure. Raynaud’s is the constriction of blood vessels in response to a decrease in temperature, and/or stress. This narrowing of the blood vessels can be extremely painful,…
This week my husband Max surprised me with a day trip to Akaroa — he must have read my last column! Outings such as this can be big undertakings for the chronically unwell. As I began to plan what was needed…
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