Category: cystic fibrosis
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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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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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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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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…
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Catch me if I can
Each morning, I fill a mug with water and microwave it for my soon-to-be peppermint tea. As the water heats, I gather my nebulized meds. I move my therapy vest to my location of choice—lately in front of the fireplace. I grab my journal and a pen, then head back to the kitchen to prepare…
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2.0.2.6
Welcome to 2026! If you know me, you know I loooove me some goal setting, some personal development, some psychoanalysis. The feeling of a fresh start excites me. Many nights (since coming off Trikafta), I go to sleep giddy about waking up the next morning—excited about what the day will hold. I love sleeping, but…
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I’ll be home for Christmas
‘Twas the night before Christmas when I finally broke freeTo finish healing at home with the help of IVs;I plopped on the couch, dogs wrapped in my legs,And waited for Santa to deliver my meds. Well. That was the least Christmassy Christmas ever, but I’m okay with it. My virus-like symptoms began in mid November,…
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Ho-ho-hospital
I just spent my seventh night in the hospital. I went to sleep when my IV antibiotic finished just after 11:00 p.m. Then the nurse came in to draw blood at midnight. Then the tech came in to get my vital signs at 1:00 a.m. Then the nurse came in to hook me up to…
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Marry Christmas
A decade ago today, I woke up in a cabin in Blue Ridge, Georgia, ready to become Ramón’s wife. Typing “Ramón’s wife” still feels odd because, in many ways, it’s as though I never got to fulfill that role. It’s also weird because I tend to avoid titles, meaning I’d never really called him my…
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Let it slow
I’ve been meaning to post for the last several weeks, and I’m finally here. I was mostly busy judging the writing ideas that came to mind and, ya know, getting in my own way—something I think most of us can relate to. I’ve also been pretty sick for the past several weeks.
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Pole dancing
A haiku:Drip drip drip all dayAlways dancing with the polePoison in my veins The countdown is on! I finish up IV antibiotics tomorrow, and right now it feels like I’ve never wanted something so badly in my life. Mainly I’m eager to get back to my normal sleep schedule—and ditch these side effects that make…