Columns

I had a friend over for a cuppa and a chat this week, and we found ourselves having a good laugh about events and experiences from our lives. To be honest, it was a lot more than a good laugh. The hilarity reached the stage where we…

Buying a new pair of shoes used to be one of my favorite things to do. The unsightly red spots, telangiectasia, which are generously sprinkled all over my body, limit the clothing I choose to wear. Anything backless, strapless, sleeveless, scoop-necked, or low-cut is immediately ruled out. Being…

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…