Columns

I want to introduce you to my gastric pacemaker. I’m not sure how many people know about her or what she does, and how she may have saved my life on more than one occasion. She wasn’t a fast fix. The girl is a slow worker. But over time, she’s…

Three days before my first semester away from home, I sat in a sea foam green chair straight out of the 1990s. I was 20, six months shy of graduating to my city’s adult CF clinic from the pediatric one, and sitting across from a doctor who was telling me…

Cystic fibrosis took my sister’s hearing. Well, actually, it was prolonged exposure to Tobi (tobramycin). Tobramycin is a frequently prescribed bactericidal antibiotic, or aminoglycoside, that’s effective in dealing with CF exacerbations. Because it’s so good at beating back pseudomonas, many adult CFers use it frequently and for extended…

If you plan on dressing like a doctor or a nurse this Halloween, you already know what to wear: a long white coat, scrubs, or an old-school nurse cap. Costuming a patient for a television show is easy, too. Simply put them in a hospital gown and have them…

By the time you read this, I will be going into surgery. I said that in my last column, which literally was titled “I’m Having a Scary Neck Surgery,” and I just had another one a month before this one, and one three months before that, and another…

I sat with this heavy feeling for years without knowing its name. Throughout my turbulent health journey, a deep sadness would often wash over me. I didn’t understand why, as there wasn’t a precipitating event. But I knew I had to dive into it in order to understand what was…

I assume the bathroom is a sterile, uncomfortable place for most people. It’s a room where you touch up your makeup, relieve yourself, or take a shower at the end of a long day. But for me, a chronically ill person, the bathroom is so much more than that. A…

“If someone offered me enough money to take a break from work and recover, would I stop working?” I asked myself this the other day. My surgeon had just told me I’m having spine surgery again. I’ve known this for a while — over six months, really — but…

“This just feels so sudden,” I said to the doctor who had just become my sister Mary’s new CF physician. Days before, she’d been transferred from one CF center to another in need of an emergency lung transplant. Though I had always known that my sister would eventually need a…

The first time I had to drop out of school, I was in sixth grade. I had just been diagnosed with cystic fibrosis-related diabetes. My family and I decided we didn’t feel safe navigating insulin injections in the school system, especially before I was comfortable with my own diagnosis. I…