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
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
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.
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.
I finally found something worse than shitting five times a day: not shitting five times a day. Continue reading
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.
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
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
I just took out a multi-thousand dollar bet that my lungs won’t give out in the next 5 years. I bought a car. Continue reading
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