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I’m restless. My eyes are red-rimmed from late-night Google searches. I can’t sleep, in part thanks to CF symptoms, in part because of a mind that’s running too hot, too fast. In daylight, too, I’m preoccupied. Each time I sit down…

Three years ago, I was hardly involved in the broad cystic fibrosis (CF) community. My only involvement with CF – aside from the fact that my sister and I have it – was some undergraduate research in a CF lab and taking part in Great Strides walks over the…

Today I couldn’t make an appointment with my primary care physician. Although I still feel new to the area where we live and am not exceptionally close with my primary care office, yet my primary care physician is essential. As someone with a…

The month of May rolls around and I find myself trying to take the perfect selfie. I want to capture not only my face, but also my percussive Vest device and my nebulizer. But getting it all into one shot is tricky; at some…

In my journey to make sense of the world of work while having a life-limiting illness, I have often wondered, “What does it look like to be a leader with CF?” To help answer that question, I spoke to Rob Bates, a creative director from London.

The night I received my first Hill-Rom Vest — at age 5 — was a fun one. It was a beast of a machine in the mid-1990s, a white box weighing maybe 50 pounds. Large, plastic, hollow coils connected the machine to a bulky, black vest, which fitted around…

I have a theory: All truly sick people have mental illness. I’m not saying that people who have physical diseases are crazy. (Although some of us may or may not be convinced that Jack Black is the sexiest man alive, but I’m not naming names.) Yet, I do believe…

What qualities does it take to start your own business? Grit, determination, capital, and a good idea will surely all help. Good health is rarely included in the list of qualities needed for wannabe entrepreneurs. That’s because it’s a given. But what about those…

When we say “me” or “I,” what exactly are we referring to? Are we referring to our bodies, our minds, or the combination of the two? It’s both a scientific and philosophical question, who we are. In a casual manner, we often speak in the first person when referring to…

The worst thing about being a writer is being unable to escape old drafts of yourself. Would you believe that the photos you see here were taken on the same day? (See also the Facetune skills, circa 2015, that have since been forgotten.) (Courtesy of Bailey…