Living with scleroderma means I need to make many important decisions to function, from treatment options to whether I’m well enough to get out of bed. Choices, choices, so many choices. It’s a miracle I get through so many on any given day. I…
“You practicing to become a ballerina?” my mom asks me as she lathers up soap on a sponge to wash my back. I’ve gotten pretty good at showering with one foot sticking out, as a result of an open ulcer on my heel that has to stay dry.
All those with chronic illness, and particularly those with invisible disabilities including my fellow scleroderma warriors, will know that to be able to attend important social occasions we have many considerations. Practical issues, such as parking, seating, and lift access, need to…
Living with a rare disease that has an unknown cause and no cure is daunting in every way imaginable. For me, managing my scleroderma symptoms, combined with fatigue, mobility challenges, my nutrition and food ingredients is a…
One of the most devastating ways that having scleroderma has changed my life is that I have had to stop working. Pain and profound fatigue required me to close my successful counseling practice. It was an extremely difficult decision, and one I didn’t take…
It’s unchallenging for most people to look back on life and instantly recall a singular, traumatic moment when they experienced emotional or physical pain. Whether it’s breaking an arm or losing a loved one, the moment is unforgettable due to the psychological impact. For those with a chronic…
This week, I had a review appointment with my rheumatologist. She is my primary medical professional and manages the other doctors in my specialist team ― the commander-in-chief, if you will. It is an important meeting, generally once every year. We go…
2018 is looking to be a very busy and exciting year for scleroderma patients. Before I discuss some of the many events scheduled for the year: Thank you to those who contacted me during my time away from my column. I am slowly recovering from post-traumatic…
Living with scleroderma has been interesting lately, to say the least. Expletives, curses, profanities, call them what you will … my week has been full of them, right to the brim! I’ve been so full of nastiness that it has been overflowing from my mouth at any…
A veteran soldier wounded in action. A firefighter crawling through a cascade of flames to save a baby. A husband suggesting his wife go to the gym for her New Year’s resolution. These are examples of different forms of bravery. Bravery can be defined in many ways, depending…
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