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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,…

Stress and anxiety can be extremely difficult feelings to cope with, especially when dealing with a disease that is literally taking over my body. I feel things happening to my physical self as my scleroderma slowly progresses, and that’s very hard to ignore. I can overthink, creating monsters in my head. At…

Today, to tie in with Autoimmune Disease Awareness Month in March, I am going to focus on musculoskeletal symptoms of the condition. Stiff, inflamed, painful joints and muscles are hallmarks of a range of autoimmune diseases, with arthritis the most prevalent and commonly known, and diffuse scleroderma mimicking it.

There are some very complicated aspects to scleroderma, such as: the myriad of overlapping symptoms and constant side effects, together with secondary conditions created by the many medications I must take. Revolting tests are another thing I must endure. One of the worst has to be…