Columns

A person meets their person. If they are lucky, they fall in love. They may or may not get married. Either way, they lovingly pledge for better or for worse, in sickness and in health. Too often, the vows we speak to one another are taken for granted. We believe…

Each time I read about another scleroderma warrior losing their battle, a tremendous weight crushes my soul — a combination of sadness, anger, and guilt. I’ll always remember the fear I could hear in my mother’s voice when I first discussed my scleroderma diagnosis with her. And in…

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…