This week, I am celebrating my 20th year since first dragging my “tin-man” body to the Scleroderma Unit at the Royal Free Hospital in London. September 2017. (Courtesy of Nicola Whitehill) The previous year, at the time of my initial diagnosis in September 1997,…
I’m horrified to discover that I’ve been keeping a secret from myself, locked away in my subconscious. It has to do with my scleroderma and what I appear to have been secretly believing about it. I’m not sure why I haven’t stumbled across this…
Scleroderma is a pretty “random” disease. I think the word “random” sums it up nicely for me at the moment. Currently, my symptoms are haphazard, ranging from heart palpitations and low oxygen levels one day to spending the next day in bed with…
At the start of December, I will be celebrating my 20th year since first dragging my “tin-man” body to the Scleroderma Unit at the Royal Free Hospital in London. September 2017. (Courtesy of Nicola Whitehill) The previous year, at the time of my…
At times, I can become really despondent when I see the changes that scleroderma has caused to my physical appearance. One of those times happened last weekend when I was trying to decide what to wear to a friend’s wedding. As usual, the normal kerfuffle occurred…
Systemic scleroderma has taught me many things; some useful and interesting, and others relating to the more difficult side of life. When the disease hit me, it was like a tornado wiped out every energy store I had, leaving me empty and depleted. Because of this,…
The skin is the largest organ in the body and is affected in most scleroderma patients. At the time of my diffuse scleroderma diagnosis in 1997, I had extremely tight skin across my chest, arms, hands, face, legs — all over my body. My…
Over the past week, I have been an angry little person. I contracted my husband’s head cold, and my immune system hasn’t coped well at all. Three weeks later, I remain exhausted. I’ve also had clinic appointments for my adrenal insufficiency, and doctors have concluded…
Life certainly is complicated, isn’t it? Over countless cups of tea with friends, I get to hear all about tricky mega-deals tangling big corporations, complex staffing issues, and legal wrangles with contracts. My friends have full and intricate working days and deal with perplexing problems at the…
Invisible Disabilities Week took place from Oct. 14-20. The Invisible Disabilities Association explains how those with invisible disabilities can be misunderstood: “People often ask us to define invisible disability. To define invisible disability in simple terms is a physical, mental or neurological condition that…
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