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The word “mortality” has pingponged around my brain from the moment I was introduced to the word “scleroderma.” I’ve dealt with the physical and emotional burdens of pain, depression, disabilities, and loss for over two decades. As a teenager, living with scleroderma made me angry. I bottled up all…

The sweet little boy approached his desk. As I looked up to greet him, a wall of cologne slammed into me like a wave from a tsunami. Immediately, I began coughing and gasping for air. That may sound like an overreaction, but it’s exactly what was happening. My lungs seem…

For some scleroderma patients, loss of sleep and fatigue are significant issues. Trying to manage a barrage of symptoms while exhausted is a tiring game of cat and mouse. Fortunately, until recently, I had only experienced fatigue in small doses. The occasional nap or sleepless night was all…

The gentle sound of wind chimes filled the house. Then the short melody repeated itself. And again. Every time the tune played, I heard my daughter mumble, “Alexa, stop.” She was never an easy child to wake up. Lying in bed, I listened to her become increasingly angry at her…

“I do not want my picture taken while I’m in my wheelchair, please!” These were the first words out of my mouth at my local Stepping Out to Cure Scleroderma walk in 2017. It may sound vain not to want anyone to snap a simple photo of me. But…

When I moved to Florida in 2002, I knew nothing about tropical climates, other than they’re great for beach vacations. While unpacking the moving truck, I sat down in the grass for a quick rest. That was my first mistake. Within seconds, my upper legs were covered in fire ants.

Chronic stress can lead to many physical and emotional issues, such as anxiety, high blood pressure, stomach ulcers, and heart attacks. For many people with autoimmune diseases, stress causes a ton of complications and exacerbates symptoms. This is also true for those of us with scleroderma, as stress…

She was fumbling through her coupon book, desperately trying to ignore the stares and loud sighs. As the line to the cash register grew, the moaning and groaning intensified. I gently said, “Take your time. You’re doing great.” The young woman locked eyes with me, and I could instantly feel…

Anyone living with scleroderma knows it is a difficult disease to manage. As patients, we are constantly flustered by a disease that seems to have no boundaries. Symptoms and treatment strategies vary from person to person, and scleroderma has no cure. Because of this, every scleroderma…

My feet were planted firmly on my turquoise yoga mat, and I felt strong as I held the Warrior 1 pose. My front foot was lunging forward as my arms were stretched up high above my head. Soft, spalike instrumentals swirled around me as the instructor’s voice guided me to…