June 5, 2025
In October 2007, life took an unexpected turn for me. It started with subtle signs—fatigue and swelling in my hands that made even the simplest tasks feel monumental. I knew something was wrong, but I couldn’t have imagined the journey that lay ahead. When I was finally diagnosed with scleroderma, I was fortunate to have Dr. Mosher on my side. She promptly started me on a treatment plan that included prednisone and methotrexate. At first, my life with scleroderma seemed manageable. The first year passed without too much turmoil. But as 2009 approached, my health took a drastic turn for the worse.
My husband, Bernie, and I were transferred to Ottawa, and it was there that I met Dr. Douglas Smith. His expertise and a cocktail of medications became my lifeline as I navigated the complexities of this disease. However, the symptoms began to overwhelm me. Extreme fatigue set in, and there were days when I relied on a wheelchair just to get around. I often found myself sleeping for hours, my body drained of energy. Lung involvement made it difficult to stay active, and gastrointestinal issues robbed me of the joy of food. Eating out became a painful reminder of what I had lost – food, which had always been the centerpiece of gatherings, became a source of grief as I watched others enjoy meals that I could no longer partake in.
The hardest part of living with scleroderma has been accepting the reality of my condition. Each day presents its own challenges, and the uncertainty of my illness looms over me. Will it get worse? How will I cope? Despite these fears, I strive to keep a brave face and maintain a positive outlook. I remind myself that others face far greater struggles than I do, and I feel grateful to be alive. Yet, I can’t help but miss the simple pleasure of food. Living on nutritional supplements is not a life I ever imagined for myself.
I want others to understand that scleroderma is a real disease. It’s not about laziness or lack of willpower; it’s a daily battle that comes with challenges most people can’t comprehend. It may not be a widely recognized illness, but it deserves attention. Throughout this journey, the support of my current GP, Dr. E Swift has been essential, providing expertise and guidance. I urge you to ask questions and seek to understand.
Through it all, I’ve had one steadfast supporter: my husband, Bernie. If it weren’t for his unwavering love and support, I truly don’t know where I would be today. He has been my rock, standing by me through the ups and downs of this journey, and providing me with the strength I need to face each day.
