I feel like I got quite a scare and yet you’d think I’d be used to it, as this is all downstream of the interleukin-17 inhibitor that I changed onto at the beginning of the year for my autoimmune condition.
Every single quarter, and in some cases every other month this year, I have had some bizarre skin infection resulting from otherwise pretty benign situations. An infected gland in my eye (twice!) an abscess that turned into a deep tissue infection, and a tiny incision that allowed in a subcutaneous infection all rocked my world.
As much as I am thrilled to see all of my inflammatory numbers rolling in to baseline normal, I just don’t know if I can sustain having a health crisis this frequently for a medication that is supposedly working. It’s working at an extremely high cost to my sanity and body.
And you might say, “Well, the numbers don’t lie.” And I’d agree. But there are many other factors I have to consider, not the least of which is that healthcare access in America is so bad that I have managed two of the four crisis points with medical tourism abroad.
I am going to give my IL-17 inhibitor a full year as dosing on and off biologics is no easy matter and the compounding effects are quite real. But I do very much wonder if in order to go forward I must turn back.
One of my long standing theories, and a personal coinages, is the Thursday Styles Problem. It’s a theory of knowing directionally what is coming, but never being quite sure of when.
The New York Times publishes its “styles” section on Thursdays and Sundays. If you work in media, public relations or culture, you are aware of the general trends that will emerge on Thursday ahead of time. If you know “what everyone knows everyone knows” ahead of time, there is a lot of money to be made.
Predicting the trends sounds easy when I put it this way, but the timing of it requires quite a bit of foresight, and considerable planning.
The trend piece is researched and reported over months. It requires the editor to be familiar enough with the trend to approve the writer taking time & resources. That means other upstream media has to have covered the topic in the niche which requires its own planning and coverage.
And while hype cycles have shortened, culture still takes time. And really important cultural trends may even require years to be relevant enough to be Thursday Styles worthy.
And can you afford to wait for the cycle to run? Breaking news happens and a piece gets pushed. A hotter trend might push the piece for weeks or months. If your business can’t survive the long game of becoming a Thursday Styles trend, being first hardly matters. Being right doesn’t matter as much as being right on time.
There is an art to this. Publicists play long games. They seed articles with a long arc in mind. Prediction markets place bets on the likelihood of something occurring, but with many actors you can’t really control when and how a thing happens.
So naturally when something I am doing happens within a month or so of me doing a thing, I tend to feel smug. When Albania was on the front page of the styles section while Alex and I were vacationing there, I gloated. I’d been hip to the forgotten European country for years.
Today I got a push notification about women taking testosterone. It had the full ugly animations of a thirty minute reporting on a full blown phenomenon.
We’re started me with 10mg of estradiol (range 6-25mg with 8-10mg being most common), and 75mg of testosterone (range 50-150mg with the most common being 75-100). Day 1754
I have been very open about my dosing, my own bloodwork, and what went into why I chose to do it. Which, I’m glad, as the New York Times sure isn’t telling. Being very honest and open about details seems important as I have the privilege to experiment and I want others to benefit from that.
Because of minor complications, I’ve been attempting to be entirely transparent with those as well. The treatment itself is not dangerous and is tolerated very well, but I have had unusually high incidences of skin infections due to the IL-17 inhibitor I take for my chronic inflammatory condition, which led to a longer recovery than I’d have preferred.
Now that this is a full blown trend I promise to report back as I heal and as my blood work begins to show results. Until then, if you want to know what other trends I think will hit big and want to get ahead of the pack, remember I am just a message away. And I keep a shopping blog as well so you can buy what I buy before it shows up with a rave in the New York Times.
And then it seemed I took a turn six days further on. Perhaps some trauma from the lidocaine and epinephrine induced enough of altered window of immunity that some bacterial weaseled its way in the wound and viola a subcutaneous infection called cellulitis.
I was put on two different antibiotics and we figured it would clear quickly. That was incorrect And it has been a slow healing process
Barely improving day by day. And I had somehow made the decision the night before the procedure that I would just waltz into a new beauty shopping blog as the holiday season warmed up. So that was perhaps bad luck on my part. And has slowed me down on something I was doing for some joy so I hope I didn’t let anyone down. I am muddling through.
Today I got an ultrasound on the wound after a fever spike and did a number of blood tests to see where my white blood cells and inflammatory markers were at.
The local hospital was having computer troubles which meant trouble scheduling an ultrasound but we managed to find another imagining clinic this morning.
Back at the hospital for bloods (they do walk ins for blood draws) they still appeared to be having issues with computers. “Your insurance isn’t recognized” was the verdict thirty minutes after using it at other lab. That made for a chuckle but we got it done.
The results are already in and we seem to be looking at healthy epithelial tissues and my CRP and Sed Rates were not elevated. Of course, half the reason I am worried is I take an immune suppressant for chronic autoimmune inflammatory condition.
It seems to manifest frequently as skin infections. My old drug wasn’t nearly as effective but it also didn’t have side effects. S
Hopefully slowly and with lots of protein and rest I’ll be healed and can spend my time on work and my pet beauty blog.
And tomorrow I’ll cross my 30th HBOT treatment mark so maybe it can make progress on building me up instead of dealing with a flesh wound. Which is actually just damned good luck on our part.
When I got the pathology report a week later, learning it was an MSSA antibiotic resistant infection so bad it reached my deep tissues made me even more afraid.
A deep abscess around a horizontal ingrown hair that was “probably just an inflamed lymph node”
I was lucky my surgeon was quite talented. The single stitch she was able to use has been absorbed. That was the hardest part. I could manage the draining pustulence and the pain just fine. But the only visibility into the wound’s healing process are only via secondary diagnostic clues. It’s a waiting game that requires a strong dampener on your disgust reflex.
As the stitch fell into the wound and curled up I felt panic. It looked like a ringworm infection or the gestation of a Xenomorph. If I had not had access to artificial intelligence diagnostic tools I don’t know how I would have managed if I’m very honest.
Your brain sees things and the limbic response invades your dreams. A stitch mimicking the infamously hostile endoparasitoid from Aliens is a bad time. I relied heavily on artificial intelligence to monitor its progression.
My phone is now cluttered with images of the wound’s progress. My varied AI applications accepted me uploading progress pictures after some experimenting.
I was uploading “Georgia O’Keefe/Not Georgia O’Keefe” imagery. The models were playing Cunt/Not Cunt for those who need a less polite euphemism for machine learning classifiers.
I’m certain special interests will eventually seek to keep these tools away from patients. We will be scared into letting them. But I know I got better care from a large language model than half the doctors I encountered.
All this cost me most of the month and around four thousand dollars. Which isn’t bad for transit, hotel, and a surgery in Istanbul.
The losses I can’t quantify are harder. A number of people who deserve responses from me probably won’t ever get it.
An in-group drama, ironically over usage of artificial intelligence, was paused by me not because it was resolved but because I could no longer find the fight in me to insist on apologies and reciprocal support while on Cipro in a hospital bed. It’s not fun to learn who is and isn’t your friend through medical emergencies.
My apologies to an offline gentleman who was the unwitting irritant who triggered said social wound. Maybe I should have excised any social obligation to them just as the surgery excised the infected tissue.
Either way, August can’t come soon enough and artificial intelligence deserves the credit for keeping alive through July.
Perhaps that should be considered in the complaints my counter parties had over the utility and need for artificial intelligence. It’s no god or anti-Christ, but it’s a damn fine diagnostic tool. No wonder the stakes in that fight are so high. Everyone wants a cut when you get cut open.
