5 Things I Wish Someone Told Me About Having Cystic Fibrosis

May is Cystic Fibrosis Awareness month, which always makes me feel like I should write a stirring, insightful piece about the challenges of CF. In lieu of that, please accept these 5 things I wish someone would have told me about dealing with CF.

Bonus Entry: If you find the orange enzyme, you get to tour the factory!

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Such a beautiful display

An Open Letter to NBC about Olympic Coverage

Considering all the hype about the conditions surrounding this year’s games, it’s ironic that Olympic fever is hard to catch this year. Time delays, shoddy editing, and apps that barely work are taking a lot of the joy out of the spirit of competition. And then there’s the commentary. Even with 7 commercial breaks per half hour and random outages, you should still at least pretend someone is watching.

Look, I don’t like to criticize unless I have a solution to offer, so I’d encourage everyone/anyone at NBC to hit play on the below video of me doing commentary over the iOS gaming sensation Justin Smith’s Realistic Summer Sports Simulator and book me a flight to Rio immediately.

I’m going to need bottled water though.


The Real Purpose of Swimsuit Netting

In a perfect world, I’d get to wake up in PM daylight every day. Not too late—noon or 1 is fine—but I don’t want to deal with alarm clocks and bed times. I’d get up, do my stuff, maybe get a workout in, eat a pile of nachos and go to work. Yes, I’d still work—I’m a man who loves a project—but none of this eight hour workday stuff. I’d work until I was done for the day, be it 4 hours or 12. Then I’d go home, probably eat more nachos, and do my research (which is fancy talk for fall down a Wikipedia hole). I suppose this world wouldn’t have noise restrictions either, so I could really get into it if I started reading about Musique Concrete or something.

However, this world is not perfect. I know this because my taint is on fire.

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Want vs Need: Time Investment

My medium is watered down acrylic on printer paper.

I have this hanging above my computer desk.

I need to write a sequel to my first book, Can’t Eat, Can’t Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me. At least, that’s what I keep telling myself.

As I get older, I’ve really started thinking of time as a finite resource. I always thought I did, but without any real responsibility (beyond breathing, that is), it’s easy to labor under the illusion that there’s still time to do everything. It’s the subtle difference between “I might as well do this, I’m going to die” and “I need to get this straightened out before I die.” The truth is, the world does not need a sequel to Can’t Eat, Can’t Breathe anymore than it needed Can’t Eat, Can’t Breathe in the first place, which is to say not at all. Still, it remains the piece of creative work I’ve gotten the most feedback on and it’s one of my few projects that ended up in profit so in my head a sequel makes sense as a time investment.

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Helpful Holiday Hints 2015

It’s been a while since I’ve written anything here. Not because I haven’t wanted to (I’ve got a lot of ideas kicking around) and not because I forgot my login credentials (even if I totally did for a while) but because I’ve been chasing a White Whale of a project since sometime last January. I’m not quite finished with it yet, so I don’t want to talk too much about it (there’s still a 50 percent chance that it will be complete shit), but since I’ve got that whale in my sights, I’ve managed to carve out a little time each day to write a Helpful Holiday Hint on my Facebook page and the Helpful Holiday Twitter page. Brad Sheridan of Why Do I Rock? has even drawn comics for a few of them. Here are a few of this year’s classics:

No snow for a Christmas morning snowball fight? Try using chilled baseballs.

If your siblings wanted to get presents too, they wouldn’t have had kids.

They can’t prove you bought it at the dollar store.

Throw everyone’s name into a Santa hat and have the oldest child pick one out. That person gets to run Grandma over with a reindeer.

Panhandling is acceptable as long as you’re ringing a bell.

You can save a lot of money by telling your child they’re on the naughty list.

To teach children how other cultures celebrate Christmas, have them build some sweet Air Jordans and mail them to the kids down the street.

Bring some holiday pizzazz to your baked goods by adding two tablespoons of glitter.

Wow, what a lineup! I’ve still got three more days of this left, so friend me on Facebook or follow @HelpfulHoliday on Twitter (or just follow me at @allhallowsevil and we can ignore the holidays together).

It's the sesame seeds that really make it.

Burger King’s Halloween Whopper: Crappin’ Magic

It's the sesame seeds that really make it.

Halfway through my failed attempt to eat the Burger King Halloween Whopper into a bat symbol.

When I was 5 or one of those other dumbass ages when you do dumbass things, I had a two day obsession with cranberry juice. Part of it was that I was at my dad’s house and cranberry juice was the only thing that didn’t taste like bullshit, but most of it was because on my second glass, my father’s roommate said “Wow, you’re going to pee red if you keep that up.”

I kept going for two goddamn days didn’t see so much as a darker yellow. Continue reading

I Approve of Orkambi, But Not of the Price

Orkambi—the new Cystic Fibrosis drug from Vertex Pharmaceuticals—just received FDA approval. I was hoping that it would, because it’s a fine drug. That’s my review of it: it’s fine. It does some things very well—my lung function is currently hovering around 77%, which matches my adulthood high from 2009—while other things—my digestion, diabetes and sinuses—haven’t responded as positively. If you’d like, I wrote a whole bunch of words about my experience here, here and here. Most of that still applies, though I’ve since switched digestive enzymes and added a long acting insulin to my routine, both of which have been positive changes. With my new enzymes, I’m able to get away with around 240,000 units of lipase per meal, which is down from the all-time high I hit during the study—300,000, a number that’s probably unsafe–but still above my pre-study number of 200,000 units. Continue reading