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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…

Because of my cystic fibrosis (CF) and double-lung transplant, I receive Social Security Disability Insurance (SSDI). When I got my statement last month, my stomach dropped. With the cost-of-living adjustment, my monthly benefit had increased slightly. Sounds like good news, right? However, that increase pushed me just over…

“I’m freaking out — have you ever had a burst blood vessel in your eyeball?” This is a recent text message I sent to a dear friend. We’re not only friends; we both live with cystic fibrosis (CF) and have had a double-lung transplant. She gets me on…

Eight years ago, I walked down the corridor that connected the hospital to the clinical research wing. I arrived at what felt a bit like a movie set, but was actually the floor where clinical trial participants would receive intravenous infusions of either a placebo or the investigational drug. It…