Less than a week remains until Rare Disease Day (Feb. 28), the theme for which this year is research. In this column I discuss some of the many current unmet research needs of systemic scleroderma and Raynaud’s patients. Clearly, a cure, combined with understanding of the disease cause,…
My scleroderma keeps me inactive; the pain and fatigue are continuous. There are times when I feel my recliner has trapped me — that it has become a kind of prison because I am forced to rest in it all day. I imagine that many people suffering…
Lately, life has been a bit of a conveyor belt loaded with one health challenge after another due to my systemic scleroderma. Just when it seems to slow to a halt, something cranks up the darn thing again. At times like this it is difficult to find…
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,…
Get regular updates to your inbox.