Two Christmases ago, my husband gave me a gift certificate for a massage. This week, I finally scheduled my first massage and cashed in the expiring gift. The timing felt designed, as my body is aching from inflammation and lugging around a 10-month-old baby boy one-third my size. I even…
Columns
On July 2, 2016, I awoke from a nightmare with a wheeze. In the movies, people awaken from nightmares with a gasp. But gasping takes air. I’d been suffocating for days. Days of tripping through a horrific hallucination that may sound funny, but only if you didn’t live…
Part two of a series. Read part one. Last week, I wrote about how disheartened I felt that many lung transplant centers refuse to help cystic fibrosis patients with Mycobacterium abscessus complex (Myco Ab), which is a species of nontuberculous mycobacteria (NTM). Myco Ab makes transplant…
Being in a committed, loving, long-term relationship is a distinctly intimate experience. It is the most intimate experience of humanhood many would argue. To see a person walking by and say to them, “Hey, you’re fairly OK-looking. Would you like to hold hands for forever and accrue…
At some point in the eighth grade in 2008, I drank some bad water. Later, I vomited and some of that yuck liquid aspirated into my lungs. That invasion carried with it a battalion of crack marines, nontuberculous mycobacteria (NTM), to join the well-weathered forces…
I’ve had headaches since I was 10. Debilitating, eye-crushing, every-bone-in-my-face-feels-like-it’s-been-smashed-with-a-baseball-bat headaches. Depending on what doctor you ask, they either can or cannot be classified as migraines. (Well, depending on what doctor you ask, there’s really no difference between headaches and migraines in the first…
Tidying Tips for Low-energy Days
We all have those days with CF when the coughing is nonstop and the energy has fizzled long before the clock sounds noon. Unfortunately, low-energy days don’t magically retract our responsibility to lend a hand around the house. Maybe you are a parent chasing chaotic babies and tripping over blocks…
After 37 hours of travel, I landed in Belgrade, Serbia. I hopped in a cab and rolled past rows of rusted relics — airplanes of various centuries, including the rotting wreckages of NATO planes that once carried disastrous payloads during the ruinous Yugoslav Wars of the 1990s.
Cystic fibrosis has slowly, but surely, been creeping and nosing into parts of my life previously untouched. Just the other day I was watching a morning routine video on YouTube. All I could think was, “Wow. That looks like such a nice and productive morning. I should…
Let’s make this very clear: I don’t think I need to defend myself when it comes to the decisions that I make in my life with cystic fibrosis. However, I am a firm believer in the idea that with a greater understanding of others’ experiences comes greater empathy, and finally,…
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