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 →
This has nothing to do with this post, I just like pictures of my insides.
Instead of writing about how shitty my lungs are, I thought I’d write about writing about how shitty my lungs are. Think of it like one of those crappy EPK-style features they used to put on DVDs. If you’ve ever wanted to know how many words were in the first draft of my book, today’s your lucky day. Continue reading →
I also applied at the C + C Music Factory, but didn’t pass the sweat test.
In my early 20s, I had a lot of insurance problems. That means I got a lot of advice that boiled down to “You should get a job with insurance.” After hearing enough of this, I started to wonder if everyone was right and I was just lazy, so I picked up a 9 to 5 at the local factory. I’m pretty sure I signed something prohibiting me from saying what factory it was, but it was a popular chip manufacturer. Continue reading →
Over the past week, my area has seen a lot of cold, miserable weather. And over the past few days–with appointments, work and general chicanery–I haven’t seen a lot of sleep. Also, my lungs feel like they’ve been building a collection of that thick run-off that gets left on the plate when you have ice cream cake. Though there’s a chance that they’re slowly building me an apology ice cream cake, I don’t know how they are going to deliver it, because nothing is moving down there. Continue reading →
Hi, my name is Jay and I have Cystic Fibrosis. A lot of you are reading this because you saw my article on Cracked.com today, so I thought it might be nice to weed through some of the bullshit here and put my best foot forward.
If you’re interested in hearing more about CF, you may want to check out this video I made:
If you don’t give two shits about CF, perhaps I can interest you in this video of me eating a steak from the dollar store:
Don’t have time for that? Here’s a 14 second jingle about Arby’s:
If you don’t feel like watching videos, you can always read about the time a large man at Hometown Buffet threatened to stab me with a sword:
This is pretty accurate to how I look if I’m up before noon.
Because I’m a creature being propelled through the world by science, I empathize with Frankenstein’s Monster. And even though I’m still operating with all my original parts, there are many a day when I feel stitched together from pre-putrescent parts picked from their plots (sorry for the alliteration—I’ve been reading a lot of old school Marvel) . Just a lumbering mass of limbs and tubes hurdling brutishly throughout the day. Continue reading →
This is pretty much how I remember every flu shot.
Needles are my spiders. Or snakes. Or coconut crabs (actually, coconut crabs are my coconut crabs). Needles are the thing in life that I don’t like. Everyone has something. So when I spent a Monday afternoon alone in the corner of a Denny’s, shooting up in front of a plate of nachos, I was really proud of myself. Continue reading →
