Until writing this particular column, there had been an aspect of scleroderma that I still had not managed to come to any place of peace with since my diagnosis five years ago. It tormented me terribly, particularly when I had new results coming in…
In the hospital last year after major surgery, I was unable to do much without assistance from my nurse. As a scleroderma patient who suffers from Raynaud’s disease, it is imperative that I keep warm, so my husband had set my room temperature accordingly. My nurse…
Naturally, I am in contact with many people who have scleroderma, because I also have systemic scleroderma. I connect with other patients either through social media networks online or in person. Some scleroderma patients are high-profile people, many of whom we know well because we see…
As a scleroderma patient, I have a trusted team of medical experts who work with me to help keep me as well as possible, and prescription exercise is part of their treatment plan. This week, however, I’ve had to admit that I appear to…
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…
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