I remember clearly the day I was given my diagnosis of systemic scleroderma. However, I think it was quite some time after this that I got my diagnosis of systemic scleroderma. “Being given” and “ getting” are two different things. The first happened in the matter of a…
What in the world is going on with my phone? I held up my cell phone to show my fellow clueless Generation X friend the loud alerts that were beeping through cyber space. Um, I’m not really sure what’s happening, but I think my story just went viral.
New Year’s resolutions: Like them or not, there is plenty to be said about the whole idea at this time of the year. I recall the last time I resolved to make a new year’s change. It was just prior to my disease being diagnosed, and it was…
Every scleroderma patient presents with differing symptoms. Diffuse/systemic scleroderma affects the entire body, making the need for a multi-disciplinary medical team paramount to ensure optimum patient care. Attending and preparing for medical appointments is a full-time job, even when the symptoms have stabilized. In the U.K. we are…
This column is dedicated to all the chronically ill mothers who, despite the often-invisible internal battle raging inside them 24/7, fight every day to do their best for their kids. I identify with the pain you feel as you drive to your child’s end-of-year awards ceremony, cannot find an…
“Mommy, come sit next to me on the floor and help me do this puzzle,” my 2-year old son demanded. “I’m sorry, sweetie, but mommy can’t sit on the floor next to you. Let’s put the puzzle on the table. We can sit at the table and do…
Anniversaries: The date on which a particular event took place. Some of them we like to remember. Others we don’t. This time of year brings around several significant anniversaries for me. Our wedding anniversary is in early December. The birthdays of two our two older sons are in…
Many people tell me they worry about how much pain I endure and wonder if having scleroderma hurts. I rarely address this because I don’t want others to worry about me. I also don’t want to bore anyone with a lengthy description of all my ailments. Have you ever…
Almost 18 years to the day from my visit to the Scleroderma Unit at The Royal Free Hospital in London, I was exhilarated to have been told on Nov. 30 by world-renowned scleroderma expert Prof. Chris Denton that my “skin is now cured from…
Several years ago when I was working as a therapist, I came across the work of Elaine Aron – The Highly Sensitive Person. After reading her first book I quickly realized she was describing me! It was all a bit spooky; I began to wonder if she…
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