Category: hope
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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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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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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…
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Let love win
I’ve started to write countless posts this week—in my head, on my phone, on the computer. But every time I try to put my thoughts into words, it feels insufficient. Plus, no matter how I phrase things, I fear I might add to the growing sense of division, which is basically the antithesis of why…
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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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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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Somewhere near-ish to the rainbow
A week ago today, John and I walked out of a sushi restaurant and found ourselves under a rainbow. I can’t remember the last time I saw one, and my heart brimmed with love at the sight of it—a welcomed giddiness. I thought of Ramón, yes, but I was equally mesmerized because I’d just arrived…
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Grape expectations
Let me tell to you about a grape soda situation. I just opened a Zevia-brand grape soda. It has no sugar, so we’ll see what’s up with that. I bought them on Sunday and haven’t tried one yet. Why? Because I have an oddly messed-up way of thinking. I often believe I need to “earn”…
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Lung time, no update
A few weeks ago, I sent this message to my doctor. Trikafta = the “miracle drug.” I think I’m at the end of my Trikafta journey. Before I discontinue, I’d like to get some bloodwork done, particularly to gauge current liver enzyme levels and hormone levels (specifically estrodial, progesterone, testosterone, and any others that were a…
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Leg lamentations
“Recovery will take between four and six months,” the surgeon said as I lay in the hospital bed, cast up to my thigh. At first this overwhelmed me, but I remembered I’d always been a quick learner. In school, I easily picked up on new concepts—somewhat annoyingly ahead of the curve. But I neglected to…
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“I love you, but…”
About a decade ago, I was standing on the beach with a couple of my uncles, enjoying the perfect balance of sunshine and breeze. As water pooled around our feet, somehow the not-relaxing topic of politics came up. In a moment of boldness, fueled by alcohol, I posed a somewhat inflammatory question: “Does it bother…
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Joyful June: I Broke Myself
As May drew to an end, I decided I wanted to approach June with a different perspective. Having become increasingly bogged down by the ins and outs of daily life, I liked the thought of making a conscious effort to look for the joy that exists in each day. And, if I had trouble finding…