Scleroderma and the Ordinary Girl

I think I have been stuck in some kind of time warp. Either that or I have been unconsciously under the illusion that I haven’t really changed over the past couple of decades. However, I have, of course. This realization was brought about recently…

When I wrote my last column, I had no idea that my old dog Merlin was on the verge of dying. Despite having suffered from nasty arthritic hind legs for a while, he still had a good quality of life and was managing with pain…

One of the many distressing aspects that scleroderma has brought to my life is my immune system’s inability to cope with any illness that comes my way. Part of the problem is that I take mycophenolate to help slow down the progress of my lung…

I feel strangely uncomfortable sharing my opinion in this particular column. I am conscious that there are many facets to the question of cannabis use, and differing opinions and ideas. There is much to say about its many benefits for the unwell and the questionable suppression…

I recently had lunch at the casino with a dear friend. We had planned it for some time, it was in my online diary, and I was really pleased to wake up on the day feeling well enough to go. Lunch was delicious,…

When I became chronically unwell, the last thing I thought I would need was a social calendar. At the time of my diagnosis, I spent many hours resting due to relentless fatigue. I almost deleted the calendar application on my computer. It just didn’t seem feasible…

As a chronically unwell parent, I am aware of the many complicating issues scleroderma has introduced into our family life. I have been especially worried about our son Jack, who was much younger than our two older (and just as wonderful) boys at the time of…

Since becoming chronically unwell five years ago with systemic scleroderma, I had to quit my job. As my husband and friends work during the week, I spend more and more time by myself. This means I have been forced into a situation that…

Being chronically unwell wears me down. I find that it is hard work to get through so many complications on most days. I am not referring only to pain and fatigue, but also to myriad other challenges including anxiety, boredom, and disappointment.

I have recently become convinced that there is a specific event, kind of a “rite of passage,” that occurs for many chronically unwell people somewhere on their patient journey. I like to call it “The Great Transition.”  It is the point when you realize…