“Ahh, great, another day to spend in bed.” I’ll bet no chronically ill patient has ever said this. Living with the currently incurable rare diseases scleroderma and Raynaud’s has certainly meant that I have had to spend more time in my bed over the last 19 years…
Being a systemic scleroderma patient and travelling away for a vacation is a huge challenge, mentally, physically and emotionally. Enjoying yourself is even more of a trial, as I recently discovered on a weekend breakaway to Aukland, New Zealand with my husband Max…
The beginning of any journey in life is the most crucial place to set the direction the path will take. Childhood is an important stage to teach manners, responsibility and respect. Even the beginning of a song can make someone change it or leave it. Diseases work the same way,…
I am currently preparing for knee replacement surgery, take two (my left knee was replaced eight months ago). The entire preparation has reached fever pitch for me recently, with a flurry of appointments set in motion to give me a clear picture about how things will…
One of my biggest challenges of living with the chronic, incurable, and rare disease scleroderma and Raynaud’s, is that I am no longer physically able to maintain my professional career as a practicing barrister. The last time that I wore my court robes, wig and gown, was June…
A family wedding this past weekend became a catalyst that prompted me to think quite carefully about the changes that seem to have occurred in my personality since being diagnosed with systemic scleroderma. During the wedding service, I noticed how I was waiting…
I am preparing for my second knee replacement surgery as a scleroderma patient. It is a miracle I am even contemplating it after my experience with the first. However, if I want to be able to walk properly again, it is simply a necessity.
Living with a rare disease brings many challenges, along with becoming an expert on your own medical condition. The rare disease patient’s Holy Grail is to actually receive a diagnosis whereby a treatment care plan then can be put together and, at best, will be focused on symptom…
Loneliness comes in many forms, and for many different reasons, each version being a bleak and forlorn experience. I believe there is a particularly desolate and isolated type of loneliness that those with chronic pain experience every single day. As such,…
For the past week, I’ve had a terrible cold. I’m low-energy, stuffy and cranky, and I can’t get comfortable enough to sleep. In a few days, my cold will hopefully pass and I’ll feel “‘normal” again. Ah, if only my “normal” were really normal. For 32 years,…
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