There have been times when my spirit just feels broken by scleroderma. It is hard to feel grounded when I am tired, in pain, and feel unwell and frightened about my future. Scleroderma’s presence in my life is so overwhelmingly relentless that it breaks my…
Those three words — “You have scleroderma” — followed by — “and Raynaud’s” — have without doubt life-changing, if not life-threatening, consequences. In this column, I discuss the day-to-day impact these three words have, and the lifestyle adjustments and changes required to respect symptoms. Paradoxically, hearing those…
When I was in my 20s I was one of the very first people go bungee jumping here in New Zealand, when AJ Hackett operated from a tiny caravan set up by the Kawarau Bridge in Queenstown. I went with a very close friend and we…
A kaleidoscope of thoughts pass through our minds every second of the day. The unpredictable nature of a disease can change the way we think, rewiring our emotions and feelings in the process. A person with a chronic illness can feel alive and well one day, and…
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…
Facebook recently announced it has reached 2 billion monthly users worldwide. This means that a quarter of the world is using Facebook. Social media has become one of the main platforms of communication for many in this day and age. It is one of the most powerful tools used…
Last month was Scleroderma Awareness Month, with June 29 being World Scleroderma Day. And, WOW, what a busy month it was for raising awareness of our multi-complex, rare disease! In this column, I discuss the importance of raising awareness, along with the results…
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…
When I was a kid, my friends and I loved to look at one another and spout with cruelty, “I hate you!” Just when it looked as though someone might cry, we’d shout with delight, “I’m kidding! It’s Opposite Day! I like you!” We found the concept…
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