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My experience with scleroderma has been a mashup of hot and cold emotions, physical highs and lows, and an eye-opening educational experience for both my support system and me. At times I’ve felt completely alone and scared about my future, and specifically how my health was going to look…

As I open the door, a burst of hot air covers my arm. Without hesitation, I shove both hands through the opening, allowing the heat to consume my forever-cold fingers. And for a brief moment, my body temporarily relaxes as the frosty aches in my hands dissipate. I pause for…

My first time trying to meditate was a complete failure. I couldn’t contort my legs to look like a pretzel, to mimic the “meditation pose” I’d always seen in movies. After several fruitless attempts, I decided to just do my best to sit up straight, relax my mind, and focus…

I was diagnosed with scleroderma in 2001. Finding out I was sick changed my whole life, and everyone’s lives around me. My parents, my siblings, my friends, my co-workers, my boss, and even strangers I’ve only met once were affected by my illness. At first, things stayed fairly “normal.”…

I would venture to guess that most people wake up every morning feeling refreshed after a good night’s sleep. They are probably bright-eyed and bushy-tailed, reenergized, and ready to take on the new day. Unfortunately for me, waking up every morning seems more like the movie “Groundhog Day”…

One of the first noticeable symptoms of my scleroderma was ice-cold fingers and toes. While they would morph into a lovely variety of colors, it hurt when they did their magic, color-changing routine. I admit I felt rather patriotic when they turned red, white, and blue (and sometimes…

I vividly remember sitting in the car after my pulmonologist broke the news that my lungs were scarred and I had interstitial lung disease. It was the summer of 2015, a year after my scleroderma diagnosis. According to everything I found online, this put me on the fast…

I sometimes find myself envious of other people. I’ll look at a person walking down the street and think, “What if my life path was different?” It’s not uncommon for a person with scleroderma to try to rationalize why their life is the way it is, and why…

Back when we had to patiently sit through TV commercials, I would shake my head in confusion after hearing all the possible side effects of the medications being advertised. I was baffled that someone would be crazy enough to risk their lives for a prescription. Until I became that person.

I remember as a child having no fear. I would throw myself headfirst into any and everything, not caring whether it was safe or the right thing to do. I just let go of all my inhibitions and made that leap. I wish I could say my fearlessness stayed with…