Scleroderma and the Ordinary Girl — Kim Tocker

The enormity of systemic scleroderma often feels way too big for me to fight. At times, I feel like a very small person, weakened by disease, who is just trying to get through each day. I often wistfully wonder if there will ever be enough understanding to find…

While I have been recovering from my knee replacement surgery, I have been giving much thought to how I view things as a scleroderma patient. I have been pondering an age-old concept, considering whether the glass is half empty or half full.  Lately, it…

It’s two days before I have surgery as a scleroderma patient, and because I have endured one total knee replacement already, I unfortunately know what I am in for.  However, in the lead-up to the big day, I have had a visit from an…

I believe that there is a point when a scleroderma patient realizes that it is time to fully accept that they are unwell and commit to having the disease. Despite that this sounds like a one-way ticket to Depression City, it actually isn’t. The decision…

Many patients with scleroderma experience severe pain. Pain relief and management is a vital necessity for scleroderma patients. Especially because their pain can present itself in many formats, and at varying degrees. However, pain is often isolated within the patient, making it is invisible to others. Because of this, it is difficult…

Writing about scleroderma is important. It helps to raise awareness, and with any luck, funding for research to help find a cure will follow. I believe that one of the most important sources of information comes from the patients themselves. There is nothing more real than reading…

  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…