GIRL DREW
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Six years (of praise)
Today marks six years since Ramón took his last breaths, and the grief feels heavier this go-round. My own breaths grow shallow as I type these words. I suspect the sorrow is greater because, within the past year, I had to say goodbye to two of the dogs that comprised our little family: beagles Noodle,…
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To love what death can touch
A few mornings ago, I saw two people walking a black lab. One had a jar of peanut butter tucked under her arm, her other hand holding a spatula that the dog was joyously licking as they walked. They weren’t moving quickly, but they weren’t going slowly, either. My gut told me it might be…
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A cartwheel-free zone
Part of me doesn’t want to post an update because I’m exhausted that my health has become such a focal point in my life. I’d love to be posting about fun trips and little adventures and other things I’m doing with my boundless energy. But here’s the quick update: I haven’t done any cartwheels. Everything…
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A change of heart
The directions for tomorrow’s heart procedure include the following line: Wear lightweight, foldable clothing. The word that stands out is “foldable.” To me this implies that, at some point, a patient arrived wearing something that could not be folded. And I want to know what that was. Did the person not want it folded because…
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It’s the heart knock life
Today I’m thinking about a scene from the movie Office Space. Those who know me well will be surprised I’m quoting a movie, but here goes. Peter Gibbons: So, I was sitting in my cubicle today, and I realized, ever since I started working, every single day of my life has been worse than the…
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PICC or it didn’t happen
Last Thursday I got a PICC line so I can do home IV antibiotics [again]. A student was placing the line, and the supervising guy was insufferable. I was uncomfortably lying on the metal table, trying to relax, as he announced, “Now’s your time to shine. Show us what you’ve got!” That didn’t instill a…
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Oxygen: The Gateway Drug
I am so high on oxygen right now. Seriously. You should get your hands on some of this stuff. After living with relentless shortness of breath and headaches for what felt like forever, I finally got oxygen delivered to the house yesterday. So, for the first time in about a year, I can sit comfortably…
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Forever birthday
I had my annual dermatology visit on Tuesday. “I can’t believe she’s 40,” the doctor said quietly outside my exam room. “She has CF.” The doctor explained the significance to the medical assistant, who said “Wow” at least five times.
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Lordy, lordy!
I never dreamed I’d see adulthood, and I certainly didn’t expect to turn 40. But here we are! Tomorrow I’ll celebrate—truly and joyously—turning 40 years old. And I’ll do it in a society that largely frowns upon aging—and definitely frowns upon frown lines. (Frown. What a weird word.)
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Trikafta: One Year Later
On December 13, 2023, I wrote this in my journal: What if I’m being killed by a miracle? The “miracle” being Trikafta, an innovative cystic fibrosis drug that I’d been on for two years. Despite improvements to my physical health, it was extinguishing my will to live. For a portion of the time I was…
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Missing Magpie (Warning: Emotions)
I became Magpie’s mom on the worst day of my life. After years of suffering, my sweet friend—Magpie’s mom—left this world in November 2018 when the pain became too much to bear. She entrusted me with Magpie, which was the most heartbreaking honor I could have fathomed.
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Bathe me in light
I dedicated the month of March to looking for magic. I thought it would help me lean into mindfulness and gratitude—devoting my attention to what is versus what could or should be. The most magical moment I’ve tuned into so far is the way the light enters the house a few minutes after 7 o’clock…
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Mission: Magic!
Before I dive into MAGICAL MARCH!, here’s a quick update on my heart: There is no update.
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MARCH FORTH!
March 4th, huh? March Fourth? March Forth! To celebrate today, I’ll share an update where MARCH FORTH! seems like a good motto. In my last post, I wrote that I’d done some tests related to my shortness of breath. It feels a little silly to say that as a person with cystic fibrosis (CF) because,…
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Saltier than average
This week I learned a fun disease-related fact (oxymoron?)—one I can’t believe I’ve never heard in my lifetime with cystic fibrosis. I’ve written before that people with CF are saltier than average. To this day, the sweat test remains the most reliable method for diagnosing CF. Through a combination of chemicals and electric stimulation, sweat…