Columns

“You might live long enough to finish college, maybe even get married, but …” I imagine this is what the textbooks used to say about cystic fibrosis (CF) when I was in college. While I heard such things at medical appointments, I refused to let that narrative define my…

I suspect that many people think living with a chronic illness means that all of your days are filled with drama, such as emergencies, hospitalizations, and constant danger. But that wasn’t how it was for me and my late daughter, Jasmine, who had cystic fibrosis (CF) and passed away…

February has always been a complicated month for me. The holidays are over, spring feels impossibly far away, and here in the Northeast, the gray skies and frigid temperatures seem to stretch on endlessly. And with cold and flu season raging, this time of year presents its own unique challenges…

My permanent disabled parking placard was falling apart, and after 10 years of use, it was held together with tape. So I went to the Department of Motor Vehicles to get a new one. “I’m so sorry that it’s permanent,” replied the lady behind the service counter. Her response shocked…

I never thought I’d make it to menopause. When I was growing up with cystic fibrosis (CF), living beyond young adulthood felt ambitious. Living to my mid-50s? That was science fiction. Yet here I am, facing hot flashes, brain fog, and sleepless nights — symptoms my CF care team…

Last weekend’s weather forecast called for a wind chill factor of -35 F. We don’t usually experience such low temperatures here in Vermont, but this winter has been hitting hard. Before I serenade you with “Ice Ice Baby,” I want to take a trip down memory lane. I am so…

Over the years, I’ve spent a lot of time on the phone with various organizations involved in my healthcare. Probably the most frustrating thing is having to cycle from one person to another, who then directs me back to the first person I talked to. It seems like it’s only…

As I write this, a large snowstorm is rolling over several states, and the forecast here is for accumulating snow in that relentless way that shuts down everything and has people rushing to the grocery stores to stock up. I am reminded of another storm, 30 years ago — the…

I turned 39 last month. Nearing the milestone of a new decade with cystic fibrosis (CF) feels like a big deal. Almost 40? Check. I’ve got some wrinkles and age spots! But let’s talk about the elephant in the room. Life expectancy seems to be the center of…

While the results of a recent study investigating how financial stress affects the cystic fibrosis (CF) community are alarming, they’re not surprising. I think it’s a perfect example of why this issue needs to be taken more seriously. For the study, published last month in the Journal…