Category Archives: Words

Using Cystic Fibrosis to Defend My Taste in Chain Restaurants

The other day, in violation of my long held belief that anyone who puts lettuce on a pizza is my enemy, I went to California Pizza Kitchen. I was lured from my comfortable conviction by the promise of free food and the fact that I didn’t want to throw a fit in front of a group of co-workers. Also, what if I was wrong? Maybe the last time I went to CPK, my underdeveloped palette was incapable of discerning the subtle nuances of a pizza topped with mayo tossed lettuce.

No, I was right. It sucks.

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CF in the Classroom

Pictured: Me in my school uniform.

Pictured: Me in my school uniform.

When I was younger and gave a few more fucks, I stayed out of public restrooms. I was very uncomfortable when I went to the bathroom, so I liked the home field advantage. Plus, moving my business took a decent amount of time and produced some godawful sounds. It was awkward for everyone involved. Continue reading

Thoughts on Vertex, Spin Machines and Destabilization

While you read, enjoy this picture of my lungs.

While you read, enjoy this picture of my lungs.

Yesterday, UNC School of Medicine published a research article in Science Translation Medicine saying that they found evidence that Vertex Pharmaceuticals experimental potentiator drug—the one that is supposed to move the defective CFTR protein—is destabilizing the CFTR protein after the corrector drug fixes it.

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Hope is a Dangerous Thing

hope

In general, you’re going to want to avoid little voices that tell you to do things.

When I came home from work the other day, there was a blue 2009 Camry LE parked in my driveway. While the rational thought is “Oh, someone must be over the house”, my first thought was “Holy shit, how is my car in the driveway when I’m driving it right now?!?” I may have blacked out. Continue reading

A Commencement Speech No One Asked Me to Give

"The mortars have become sentient!"

“The mortars have become sentient!”

For the 31st consecutive year, I was not asked to give any commencement speeches. I somewhat understand why the Class of ’83 didn’t ask me—most newborns are not gifted public speakers—but the other 30 years of graduating classes have no excuse. However, I like to be prepared, so here’s the commencement speech no one asked me to give. Continue reading

My Vertex Study Experience or “Going to the Bathroom for Fun and Profit”

Not nearly as cool looking as the KISS Alive II gatefold.

Not nearly as cool looking as the KISS Alive II gatefold.

In my life, I’ve seen lots of advancements in CF treatment. These have all been medicines/techniques/what-have-yous don’t treat the underlying cause of the disease, but mitigate the symptoms. None of it is easy or fun, but it does provide a concrete answer to the age old question of what I would do for a Klondike bar: I would take 8 pills and 8 units of insulin.

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And Ye of Years 31 Bells Will Chime!

Here's a birthday card I drew for my fiancee. I drew it at work, so I technically got paid for it.

Here’s a birthday card I drew for my fiancee. I drew it at work, so I technically got paid for it.

I offer a service where I tell people if their birthday is pointless. Here’s how it works: someone contacts me, tells me what age they are going to be and I tell them if their birthday is pointless. There are some mitigating factors—too miniscule and boring to go into here—but my accuracy is remarkably high. I’m not asking to be celebrated for this; I consider it part of my duty as a citizen of the world. We all need to give back what we can. Continue reading

Focus!

You can use this chart if you'd like to play along at home.

You can use this chart if you’d like to play along at home.

I recently participated in a study to gauge to efficacy of Kalydeco—a new drug that treats the underlying cause of CF instead of just the symptoms—in patients with two copies of the Delta F508 mutation. I kept a diary for the first month of that study and I wrote a piece about my experience, but I figured that piece would have more context when the results of the study actually come out. In the meantime, here’s a journal entry from the day I went to have my qualifying eye test. Continue reading