Monthly Archives: September 2023

Acknowledging the Failures of Your Body

A beautiful coastline with "A Chance to Live Longer TM" superimposed over it
Ironically, the TM on this kills me

A lot of people are ill-equipped for the inevitable failure of their body, never fully prepared for the moment they go from mogwai to gremlin. I don’t want to say aging/decaying is easy for those of us born gremlins, but I certainly think it’s easier. This is more a societal malfunction than a personal one, but it’s still a problem.

I think the most telling symptom is the way we look for reasons when something goes wrong. They’re easy enough to find—I didn’t exercise enough, ate the wrong foods, stayed up too late, ate the wrong foods after midnight, etc—but often the reason your body fails is the same reason it occasionally thrives: you were born. Hidden deep in the code that makes you “you” are hundreds if not thousands of self destruct mechanisms that can be accidentally activated or will trip themselves in time. It’s part of the game. That doesn’t mean it’s a fun game. It’s more like a Choose Your Own Adventure book that can only end poorly and that’s if someone doesn’t take the book from you first.

As with a lot of our mass perceptions, a lot of it comes down to what we’re being sold.  Look at the truly impressive American canon of prescription drug ads. They’re full of shiny people living shiny lives while simple line drawings and animations carry the heavy burden of disease.

Here’s a random ad I pulled for a lung cancer treatment called Opdivo. I have no personal connection to this drug and this is not a judgement on it’s effectiveness; it’s merely an easily accessible example. Sweeping vistas, slow motion reunions, a waterfall that cures cancer and the actual slogan of “Who Wouldn’t Want a Chance to Live Longer”, followed by a fast-as-legally-allowed speed read of impressive side effects that may end up being reasons you don’t want a chance to live longer. But that’s not the point.

The point is the popular treatment of the banal horrors that fill our lives never makes eye contact with realistic and walks right past clinical as a slow motion drone shot captures it’s loving embrace with irresponsibly sanitized. Ironically, these squeaky clean conditions probably helped set the stage for COVID to run absolutely wild. Why take precautions when your body is clearly incapable of complete collapse? Unfortunately, one’s current state of survival does not crown them as one of the fittest.

My body is mostly defined by good looks and abject failure, but even the things marketed to me try to be coy.

In my life, I’ve owned more than one vibrating vest designed to shake my lungs so that mucus comes out. The first of these came with a very funny training video where a girl is talking on the phone with her friends while The VestTM lightly shakes her bronchial tree. Talking on the phone while using that vest was definitely possible if you were okay with sounding like the wildest motherfucker at the helicopter derby, but it’s not advisable. You know what the video never mentioned? Mucus. Never shown, never heard. The actual recommended way to use the vest was to shake for a few minutes, try to cough some shit up, then get back to the shaking. But that video would have you think you’ll be playing Dream Date and making Jiffy Pop.

I can’t speak for every disease, but cystic fibrosis is often horrifying and/or disgusting. There’s not a lot of money in talking about that—I’ve got the traffic numbers to prove it—but the only thing we gain in the denial of the human body is anxiety and the ability for companies to get fat by selling us a dream they’ve made us think is the baseline: freedom from your shitty body. Unspoken and unseen. I understand why commercials don’t look like they’re in the Hellraiser extended universe, but I don’t have to be happy about it.

Even the stuff that does highlight the more human side of existence tends to take a very “them, not you” approach to things, like we cleaned up the freak show and made it palatable for modern audiences. How many people are watching Dr. Pimple Popper as a cautionary tale? How many people believe cysts are a thing that could never happen to them?

Seriously, by keeping the worst unsaid, I think it isolates people in their suffering. The failure of our bodies should bring us together. We should fight them when they suck, thank them when they work and prepare for the day when we are not what we used to be.

That Doesn’t Work for Me, Brother

Hulk Hogan is one of the most consequential figures of our time, being both patient zero for the affliction known as Hulkamania and knocking over the dominos of our media landscape by sleeping with his friend’s wife. And while he’s definitely said some stuff that you shouldn’t repeat, if you’re not familiar with wrestling, you may have missed one of the most beautiful sentences ever uttered:

That doesn’t work for me, brother.

To be fair, as far as I can tell there are no recorded instances of him saying it, it’s all first or second hand accounts. What we know is that when he wrestled for World Championship Wrestling in the 90s, he had full creative control of his character. So when he was given something to do that he didn’t like, he didn’t actually have to do it. Did he actually have to utter those magic words? I choose to live in a world where he did.

I have a somewhat prickly reputation. Part of that is health related and part of that is because I’m an asshole. But when I was younger, I was at war with that piece of myself and I ended up in a few situations that I could have avoided by being less agreeable, say being in a car with someone who smokes or going to the beach. COVID and age changed things for me. I’m less willing to take risks and make concessions on certain things, because that doesn’t work for me, brother. It’s beautiful. Gentle, yet forceful. Playful, but firm.

And if they won’t take that for answer, hit the leg drop for the 1,2,3.

Things I Like

I liked the Barbie movie a lot more than I thought I would and maybe a little more than I think I should.

I can’t pretend to be high minded in my entertainment: I grew up in Reagan’s America, so most of the beloved shows of my youth were de-regulated toy commercials. Still, these tastes are unpredictable: I like The Lego Movie—though not enough to have seen the sequel—and I’ve seen every live action film with Batman in it, but I’m cold on both G.I. Joe and Transformers. I’m conflicted about commerce as art, even if I often find myself rolling around in it. It’s the American way after all.

The first few minutes of the Barbie movie weren’t hitting me right, but as it catches steam, it started to click. I found it tremendously entertaining, such that even days later my brain hasn’t really picked at it to get to the heart of it. I’m not entirely sure how I feel about that, but I may even watch it again to find out.

However, I do think it’s funny on a meta-level that Ryan Gosling comes dangerously close to stealing the entire movie.

A Definitive Ranking of Prescription Drugs

This is most of what I need to travel, minus a cooler bag and a 22 pound vest.

For reasons simultaneously mundane and complicated, I find myself traveling a lot. The distance affords me both time for reflection and a tremendous amount of opportunities to forget the various pills and accessories that keep me alive. Although I have a 94.2% hit rate, that ain’t 100%, so here’s a list of the things I could forget, tiered by how much it sucks when I forget them

Tier 1 – Over the Counter

Pepcid (acid reducer), Claritin (allergies), Flonase (allergies and nasal polyps), Vitamins

The penalty for forgetting any of these is taking $10 to Wal-Mart and buying enough to get through the weekend. I have them listed from most important to least important above, with Pepcid topping the list because it’s actually a drug one of my other drugs takes. Also, I listed them with brand names to save everyone some Googling, but I’ll be goddamned if I’m paying double for top of the line over the counter drugs.

I have to take special vitamins as well, which technically have to be mail ordered, but I can get by for a few days on some whack ass Centrums if I really have to.

Tier 2 – Quality of Life Prescriptions

Albuterol (fast acting bronchodilator), Stiolto (long acting bronchodilator), Zithromax (maintenance antibiotic), Losartan/Hydrochlorothiazide (blood pressure reducer), Inhaled Saline Solution (mucus seasoner)

I can go a couple of days without these, but depending on the weather and my health, they may not be very fun days. Albuterol is the opening act of my daily treatments, both in that it’s the one I do first and it opens up my airways. Stiolto is also a bronchodilator, but acts long term as opposed to the quick hit of the albuterol. As such, it takes a couple of days without Stiolto before I start to think “oh yeah, I guess that was doing something”. Losartan/Hydrochlorothiazide is for my blood pressure. I haven’t missed it yet, but I imagine it’s not pleasant. Zithromax is a prescription I imagine a lot of you out there have sampled, but I take it every Monday/Wednesday/Friday to either inhibit bacteria growth or make superbugs, I don’t know. Either way, they keep giving ‘em and I keep taking ‘em. The saline solution goes in a nebulizer to salt up my mucus for easy removal. I can miss about a day of that before things start to feel a little tight.

With the exception of the Stiolto, I could afford to fill these prescriptions without insurance, though I wouldn’t be happy about it.

Tier 3 – Accessories

Monarch Vest and Power Supply (mucus shaker), Nebulizer, Air Compressor

The Monarch Vest is pretty much a $10,000 Brookstone massager. It’s supposed to shake my bronchial tree and loosen up the mucus so I can cough it out. It works fine, though we all pretend it works great because it’s more convenient than the previous version of The Vest. I rarely forget the vest, but I have forgotten the proprietary power supply. It has a battery, but I have to use it twice a day for 30 minutes at a time and the battery will only last about 3 and a half sessions. After that it’s just a 22 pound fashion statement. Luckily, it’s function can be replicated by getting someone to drum on my ribcage for a little bit.

The nebulizer and air compressor are necessary for both the saline I talked about above and another important inhaled drug that’s coming up. You’d think one would be able to stroll up to the drug store and purchase either one of these on a whim, but it’s actually surprisingly complicated, as both need a prescription. There are some websites out there that will sell you both on the honor system, but I’m not going to out any of them here. But alas, even express delivery isn’t super helpful if you need the parts right fucking now. In light of these developments, I own a backup compressor and many backup nebulizers.

Tier 4 – Diabetes Drugs and Supplies

Continuous Glucose Monitor (blood sugar meter), Novolog (short acting insulin), Basaglar (long acting insulin), Pen Needles (stabbing)

Novolog is a short acting insulin, so I need that to eat anything with carbs and basaglar is a long acting insulin, which essentially acts as a support for the Novolog. If I forget either one of these I can just stop eating carbs or try to cut a deal with a local diabetic, which is somehow easier than getting refills at a pharmacy I don’t usually use. The pen needles are used to get the insulin into my body. Apparently these are available over the counter now, which is nice, because while I can stretch the supply, I really do love a fresh needle.

The continuous glucose monitor holds the title of “thing I’m most likely to forget” because I have to change it every 10 days and it’s somehow always a surprise to me when it expires. I do have an over the counter finger prick meter I bought for those times when my calendar calculations are a little off, but if there’s one thing 10 straight days of pure blood glucose data has taught me, it’s that a one time reading is essentially useless. I’d love to sit here and tell you I’m willing to prick my finger every half hour to keep up, but it wouldn’t be long before I switched to an all Slim Jim diet or used the “well, I’m still upright” model of glucose monitoring. Neither comes recommended.

Tier 5 – The “Gotta Eat” Tier

ZenPep (digestive enzymes)

This one gets it’s own tier because without my digestive enzymes, eating is just the process of chewing things up so they’re easier to pass an hour later. That’s an exaggeration; it’s actually about 24 hours before things literally go south. It always seems these wings of wax are going to hold out, then the sun rises and I start blowing my hole out.

A few years back my stepsister got married in Vegas. It was a big family trip, so we had a big family meal at the airport Hooters the night before we left. I forgot my enzymes back in the hotel and didn’t feel like asking a van full of people to turn around. I figured I could just take them afterwards and be fine. And I was, right up until I was flop sweating on a 5 hour plane ride. I held out for about three hours, but when I finally did my business, it looked like someone shot the bowl with a paintball gun. For the next 4 days, everything I ate flew right out, regardless of enzyme consumption.

However, the “joy” of digestive enzymes is that enough people take them that after some negotiation, it’s possible to get someone to call in a few days worth to a pharmacy. It’s not cheap—they’re about $15 a pill and I take 6 per meal—but at least it’s possible. There are generic enzymes too, but those are just as good as taking nothing, even if the last time I had them they came in a blood red capsule that was stylish if not effective.

Also, these are the pills that I have to take Pepcid for, otherwise my stomach acid tears them up too fast.

Tier 6 – The Turn Around Tier

Pulmozyme (inhaled mucus thinner), Trikafta (protein modulator)

This is the turn around tier, because if I forget one of these, I’m just going back home.

Pulmozyme is an inhaled medication that splits the DNA strands of my mucus and thins it out a bit, making it all easier to bring up and pass. It has a special place in my heart because for years a one month supply was the most expensive thing I’d ever bought. The full story is in my book, but my state insurance lapsed, I couldn’t get pulmozyme, started coughing up blood after a week, and had to convince the pharmacist to let me charge it for $1,900. I paid $400 more than the insurance company because my negotiation skills are poor, I guess.

However, as nostalgic as I am for those blood spewing days of making it rain at the pharmacy, things have changed since then. For one, spending 4 figures on a drug is no longer a novel experience. Every January I get to start off the new year with a cool $1,400 copay before embarking on a journey of $4k in total out of pocket expenses. And my insurance is actually one of the better plans!

But there’s also a new top drug in town. Trikafta moves and unfolds the misplaced and messy cystic fibrosis transmembrane conductance regulator protein in my cells which helps water and salt move more normally through the cell. That means my mucus can no longer caulk a bathtub. I’m also at—or slightly above, depending on your perspective—a healthy weight for the first time in my adult life. It’s not a cure and it hasn’t lessened the number of prescriptions I’m on, but it has made CF a lot easier to manage.

Trikafta is a tremendous life changing achievement. I need to reiterate it’s not a cure as, in the words of Warren Zevon, “My Shit’s Fucked Up” and I’ve had CF long enough that a full cure is probably out of reach for me. But it has absolutely changed my life and the lives of many others for the better in a lot of ways. That makes it difficult to talk shit on it. Or at least it seems to make it difficult for most people. I’m a natural born hater. I was born to pass mucus and talk shit, and thanks to Trikafta, I’m all out of mucus.

Trikafta is fucking expensive. I’m sure it was expensive to develop, even with the $40 million that Vertex Pharmaceuticals (then known as Aurora Biosciences) got from the Cystic Fibrosis Foundation, but here is a study that estimates the manufacturing costs at less than $6,000. Looking at the last Vertex quarterly report, we can see they made a cool $915m in profit in the second quarter of the year alone. The current yearly price that shows up on my pharmacy receipts is $306,816, which makes me about .003% of their quarterly revenue before costs. Neat!

It used to be less, but they actually upped the list price after a couple of years on the market, which is quite a move if you can pull it off. I, of course, do not pay that price directly, my copays come out to about $720 a year for it. Funny enough, while I was writing this, I got a call from their patient assistance program and they were finally able to get my pharmacy to use a copay assistance card, which is something I’ve been trying to do for years. I have a lot of negative opinions about the impact of high drug prices, but at least Vertex’s customer service is tremendous. First time in my life I’ve felt like a high roller.

But that’s not the point of this. The point of this is that I forgot my Trikafta this weekend and had to turn my ass around. It comes in 7 day packs and after 3 years and a few missed doses, my 7 day cycle now starts on Saturday, so if I’m packing on a Friday night, I have to remember to throw the new pack in my medicine bag. Given that one day’s dose would be just a little less than if I bought 2 PS5s, I can’t solve this one by swiping the plastic. Of course, most pharmacies don’t stock it anyway and even if they did, it’s not like they’d break up a pack and sell me a couple of looseys. Or maybe they would, I don’t know. It seems like an expensive pain in the ass, so I just turned around.

Of the various wounds inflicted by the current prescription market, changing travel plans is a mere paper cut compared to the gaping wound of the 18 million Americans that can’t afford their prescribed medications but like a paper cut, it sure is annoying.

Things I Like

Speaking of genetic mutations, I loved the new Ninja Turtles movie. I was a big fan when I was younger, though it’s not necessarily something that’s stuck with me as I’ve gotten older, even if I did manage to buy all the Ninja Turtles as Universal Monsters figures that came out last year and I play more TMNT video games than the average 40 year old (maybe?). In any case, I think TMNT: Mutant Mayhem is about as good of a franchise update as I’ve ever seen, making some smart story adjustments and presenting a mostly fresh version of a thing that’s older than the intended audience.

Threatening the Appliances

I rewatched Ringu this week and found myself a little underwhelmed by it. The first time I saw it was on a bootleg DVD I got off eBay back in 2000. Sending a money order to a random person across the country is a fitting introduction for the film, but honestly, it wasn’t really a hit for me back then either, aside from the part where—spoiler alert—Sadako crawls out of the tv.

Ringu (1998) - IMDb
The DVD I had was a bad inkjet print of this cover

I remember that being genuinely chilling, like it was possible that she could come out of my tv too. But on the rewatch, I felt nothing. Part of that is probably the upgrade in resolution, but I think a lot of it is just that I’m not scared of my tv.

That’s interesting to me because televisions are probably the most dangerous they’ve ever been. I ran a network-level ad blocker for a short period and was truly shocked by how many times the two Roku TVs were calling home. Those things were reaching out to home base like 10,000+ times per week. Who knows what kind of shit they were talking about me?

I don’t like it, but it’s not scary.

I’m surrounded by items that know way too much about me and my finances and I guess I’m just numb to it. Or maybe it’s that there’s one crucial difference between the analog technology of yesteryear and the digital technology of today:

I will beat this TVs ass.

If you were born after 2000 or so, you may not have any memories of a tv you couldn’t take in a fight. The 32 inch Magnavox I watched that bootleg DVD of Ringu on? For most of my ownership of it, it weighed more than me. I could easily see some dingy-ass well broad climbing out of that, no problem. Good luck trying to climb out of this LG OLED, it’s not anchored to shit. I don’t care what the manual recommends.

So yeah, the elaborately sculpted wooden console television we had when I was a kid would be an absolute problem if it were haunted. You need at least two people and possibly a dolly to even shift that damn thing, let alone move it any actual distance. I still remember the feeling of turning it on, how the cathode ray would hum and the air would crackle with electricity. It was essentially a ticking time bomb we tricked into showing us pictures. A ghost gets ahold of that and we just have to move. Ghost haunts my fucking iPad and guess what? You’re haunting the neighbors roof now.

Cameras are different now too. I’m confident that I could win a fight with most of the non-medical imaging devices I’ve seen in my life, so it isn’t a matter of might. But if I took a picture of someone and their face appeared to be contorted in an inhuman manner, I wouldn’t be scared, I’d be pissed. The amount of money I paid for this goddamn phone and it starts doing that shit right when it’s out of the warranty phase? Again, it’s on the neighbor’s roof.

There’s a certain magic to analog technology. Maybe that’s because of the age I was when I was surrounded by it, but there’s a nebulous quality to static or the weird scrambled negative images you’d get when you tried to watch a channel you didn’t have. Analog technology held mysteries, while digital technology holds mostly paywalls. It’s scary in an “Eastern European man got your credit card number and keeps booking flights to Toronto” way, but not in a “ghost is about to crawl out of it” way.

I will, however, offer this brief rebuttal to my own editorial: I once worked with a guy who showed me a printout of a realtor’s listing and said “do you see what I see?”. What I saw was a smeary inkjet printout of a poorly compressed jpeg of someone’s living room. What he saw was the ghostly outline of Osiris, Egyptian Lord of the Underworld, who had somehow harnessed the power of compression artifacts to announce himself. This guy repeatedly emailed the realtor with messages like “I see what you’re trying to do” and “you can’t fool me”, so maybe digital technology can be scary in the right hands.

Things I Like

I’m conflicted by how much I enjoy music streaming services. I don’t have any particular lot for physical media–it’s mostly a means to an end for me–but I grew up on the idea that I had to directly support the artists I enjoyed, because there weren’t a ton of us listening. Now music that required numerous monetary leaps of faith for me to get at the turn of the century is available at the touch of a finger. From a consumer standpoint it’s great, but the only people making money on it are guys who don’t need it. Still, the fact that it’s easier than ever to go through a band’s discography has made my convictions weak, so I recently dug through the career of Japanese metal legends Sigh.

Back in the bulletin board days of the internet, I saw someone describe their Hail, Horror, Hail album as “a cross between black metal and music from a soap opera”.  That sounded like a phenomenal combination to me—and it is—but it took me a few years to actually track it down.

Band leader Mirai Kawashima has an unparalleled ability to make music that sounds disjointed on first listen and makes perfect sense on the third or fourth round. Part of that is the tremendous palette of sounds the band uses and part of it is just good old fashioned song craft. Unfortunately that means their discography is spread over a few different labels with various availability throughout the years, which means there were at least 3 Sigh albums I heard for the first time last week. For the record, I still think Imaginary Sonicscapes is the best, but it’s also the first one I heard back at the turn of the century, so my judgment might be suspect. But check out “Corpsecry – Angelfall” and if it works for you, dive in.

And ironically enough, Hail, Horror, Hail isn’t available on Apple Music and I apparently never ripped the copy I had (I remember the version I had having 99 tracks, but I might have made that up), so I bought it on Bandcamp from what may or may not be an official source. Turns out the old ways aren’t completely dead.