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…
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…
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.
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,…
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…
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…
There isn’t a day that goes by without someone giving me direction. Showing me the way, enlightening me, if you will. Self-created scleroderma experts seem to pop up all over the place with their endless pearls of wisdom, fervently stepping in to save me from my disease.
Have you ever been laid up by an acute episode of pain that is so debilitating all you can do is just lie there, hardly daring to breath for fear of making your agony worse? Living with systemic scleroderma means that unfortunately, acute episodes of…
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…
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