Tag Archives: Cystic Fibrosis

Bills, Bills, Bills

Here’s my main CF related problem right now: I’m sick enough to not want to go to work, but not sick enough to justify it to myself. I don’t earn a lot of sick time, so I don’t want to waste it on lungs that feel like they’re coated in a layer of dried pancake batter (wet cement or GTFO). I could get a leave that would enable me to call out using vacation time, but I burn a lot of that on doctor’s appointments anyway—I have three within the next month. I could probably work out a deal where I call out unpaid, but I have $700 worth of medical bills on my desk from those doctor’s appointments I used my vacation time on. There’s nothing Earth shattering happening right now, just a bunch of shit I don’t feel like dealing with. Maybe it’d be easier if I could breathe. Continue reading

So It’s Come to This: A Halloween Clip Show

Being a diabetic vampire means I have to check the blood sugar of my victims.

Being a diabetic vampire means I have to check the blood sugar of my victims.

I meant to write a ton of pieces for Halloween, but making the “Genetic Decree” song/video took much longer than expected. So instead, enjoy this handy guide to all the Halloween crap I’ve made over the years. Continue reading

Genetic Decree – A Death Metal Song About Cystic Fibrosis (video)

Most songs about disease don’t reflect the experience of the disease. Instead, they’re packed full of maudlin sentiments designed to drop a tear from your eye on the car ride home from the supermarket. I can’t speak for all diseases, but neither one of mine came with a soaring string section.

Sure, there’s a bittersweet beauty to the frailty of life, but in an age where people cry at beer commercials, that button is too easy to push. It’s time for a new approach.

Cystic Fibrosis makes it possible to drown in your own mucus. If you get sick enough, they harvest lungs from the dead to replace yours. Cystic Fibrosis is brutal. It requires brutal music.

So, here’s a death metal song I wrote about CF (technically, it’s blackened death thrash, but let’s not split hairs here). Even if you don’t like Death Metal, you should watch the video, because I made a lot of people—Producer and Arbiter of Taste Bekka Wrynn, Director Walter Forbes and Script Doctor/Key Grip Thomas Forbes—work on it for nothing but pizza rolls. Plus, you can see me stab myself!

You can download the track at https://allhallowsevil.bandcamp.com/track/genetic-decree. It’s a pay what you want download. Anything you can throw in the hat would really help out.

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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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

How the Sausage Was Made

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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