Category: cystic fibrosis
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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…
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Week 4: Simple September
Another week of Simple September has come and gone. Of all the weeks this month, this was the least simple, but hey. A lot fell beyond the limits of my control, and I handled it with more grace than I anticipated. Although the week’s events weren’t particularly simple, I didn’t overcomplicate them—which is all I…
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Week 1: Simple September
Here’s what went down during the first week of Simple September. Highlights include fun socks, cozy naps, and threats of hospitalization. Dun dun dun… 💜Keep up daily on Instagram!💜
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2 Legit 2 Not Quit
Today marks two months off the cystic fibrosis “miracle drug,” Trikafta, and BOY have there been changes. I like to end things on a high note, so I suppose I’ll start with the not-as-good changes first. And that description is a bit of a misnomer because I expected these things as my body returned to…
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Back to CF: Day 5
Rise and shine and wheeze! It’s day five waking up without having taken the cystic fibrosis “miracle drug.” Although I’ve toyed with different dosages over the years—even skipping three days between doses—this is the longest I’ve been without the drug since 2021. For those who are just catching up, the short story is this: As…