Category: cystic fibrosis
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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…
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Azale-yeah!
As I sneezed my way through the yard a few weeks ago, I stopped to admire these white azaleas. On a shrub of nearly identical white blooms, one flower said, “No thank you,” and showed up with a fuchsia stripe. Do the damn thing! I see you.
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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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Can you buy happiness?
I’ve been thinking about things lately. And I don’t mean “things” in an abstract sense. I’ve been thinking about tangible objects—primarily items that we purchase and make ours. One Christmas long ago, my then-boyfriend was excited for me to open my gift. I gently unwrapped the box and lifted the lid. As I peeked under…
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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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Default setting: Compassion
You’ve probably heard the term “invisible disease,” and it means exactly what you think. Cystic fibrosis (CF), for example, is an invisible disease since it’s not perceptible with the eyes alone. People might hear me cough and wonder if I’m sick. They might see me take pills before I eat. But none of these things…
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A Graduation Speech Do-Over
On a balmy Georgia night twenty years ago, I stood behind a podium on the temporary stage erected on my high school’s football field. Wearing a purple robe and mortarboard, my dyed-platinum-blonde hair in beachy waves, I looked out at the faces of about 350 classmates. And I confidently delivered what I believed to be…
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Sick of medicine. Sick without it.
I had seven voicemails when I returned home from a magical, soul-inspiring trip to Scotland in March. They were all from pharmacies. SEVEN calls about medications. I’d abruptly transitioned from fairyland back to reality. Normally I have a “whatever needs to be done” attitude when it comes to managing cystic fibrosis, but this time anger…
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I went to medical school
“Making Death Casual” should be my tagline. Most people don’t want to discuss mortality, but it’s one of my favorite topics. When I talk about death, I’m really talking about life. Yesterday I spent the morning at the Emory School of Medicine. A pulmonologist I love, Dr. Linnemann, was giving a lecture on cystic fibrosis…
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2.7 seconds on a bull named Fu Manchu
Little memories of Ramón pop into my mind on an almost daily basis. Occasionally, though, one will surface from the darkest depths of my mind—things I haven’t thought about since they were present moments. One of these memories emerged last week, and, although it made me emotional, I was grateful for its reappearance. If I…
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In the ring with insurance
Today, as I sit in front of the fireplace, I’m grateful it’s a Sunday. That means most customer service lines are closed, so I can’t feel the urge to call my health insurance provider. Well, I can certainly want to call, but I won’t get an answer—which, in many ways, is a lot like when…
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A shifting miracle
I began drafting this post three weeks ago. I’ve made second and third attempts, but nothing I write feels quite right. Today I decided I’ll just type and post whatever leaves my fingers. However it comes out, I’m sharing for transparency, not pity. In July 2021, I began taking what I touted as a cystic…