https://sclerodermanews.com/wp-content/uploads/videos/nicola_blog.mp4 The theme for this year’s Rare Disease Day on Feb. 28 is “Research,” which is a most-welcome topic to Raynaud’s and scleroderma patients across the globe. Investment in medical research provides immense hope and some comfort to the rare disease patient living with a currently…
Because I’ve been feeling gloomy since adding the diagnosis of secondary adrenal failure to my existing diagnosis of systemic scleroderma, I decided to try a little task that I used to offer my clients when I was a counselor. It’s a bit cliche, but in my experience,…
When you’ve been a “frequent flyer patient” for as long as I have, you learn how to navigate the perplexing world that is our healthcare system. For 32 years, I’ve been a prolific health care consumer (not by choice) and have seen the good, the bad and the…
Lately I’ve been despondent and a bit lost in terms of negotiating my disease. For those of you who don’t follow my column, I began the “Great Prednisone Wean-Off” several months ago. All was going well until yesterday when I failed my…
Last week, I began my column with an unusually large dose of self-deprecation. Exhibit A: ‘If my body were featured in a circus sideshow freak attraction (that’s every woman’s fantasy, right?), the announcer might exclaim, “Ladies and Gentlemen, children of all ages, come see the spotted…
https://sclerodermanews.com/wp-content/uploads/videos/nicola-vlog.mp4 Here in the northern hemisphere we are in the midst of winter. In an attempt to minimize my Raynaud’s symptoms, hibernation began in October. This entails being under house arrest, unless I really need to go out. Such “special days” out are reserved for medical appointments…
Having scleroderma and trying to stay motivated is a challenge at the best of times, and particularly so for me currently. In New Zealand our schools and universities are closed. This means ordinary life is somewhat disrupted, as my youngest child is here much of the time,…
If my body were featured in a circus sideshow attraction (that’s every woman’s fantasy, right?), the announcer might exclaim, “Ladies and gentlemen, children of all ages, come see the spotted lady with the world’s skinniest limbs and largest belly!” I am covered with red and purple splotches…
My Cat Willow Pictured is my cat, Willow. Two days prior to New Years Eve she was hit by a car outside our house. We witnessed the event, and tried our very best to restrain and help her, but she ended up bolting as fast…
His face was scattered with crater-like acne scars and budding new pimples. I remember his beady eyes being a muddy-brown and void of compassion. The sinking feeling that rippled through me as we passed in our high school hallways is branded in my visceral memory. His name…
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