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.
Oh baby baby! So it seems as if, in my infinite wisdom, I did not pay enough attention to the early warning signs from my Whoop biometrics and I did indeed need to worry about the fun and games of a subcutaneous tissue infection.
I swear that this IL-17 inhibitor drives me nuts. Despite its impressive effect on my inflammatory biomarkers, it leaves me very susceptible to skin infections. And I have to be constantly vigilant to the first signs of an issue.
I’ll be fine. I did in fact catch it before it turned into anything serious. Where I am at it’s easily treatable with a short antibiotic course that may formerly be prophylactic. My wound area had not shown any signs of spreading nor was I running a fever or otherwise exhibiting other signs of serious infection.
I just had crappy HRV numbers and high resting heart rate three days in a row and it’s not worth risking it. I threw back some basic antibiotics last night and woke up with a normal heart rate again. My HRV is coming up just a little more slowly. Glad I didn’t wait as this isn’t worth any amount of risk to me.
I comforted myself by working on my beauty blog where I’ve got routines coming along for founding subscribers and a fresh post about Shrinkflation at Sephora and a minimalist men’s routine on sale at Amazon.
Or if you are feeling adventurous for an honestly embarrassingly low fee I’ll put together a custom routine for you from my sample library or go full autistic and decant you the perfect mix of potions and lotions to meet you precise lifestyle and budget. My autistic obsession is your gain. It’s so much for me for and your skin will look amazing.
I am on a TMI roll this week so you will have to excuse this old blogger. If my n-of-1 experiments help even one woman struggling with her health, it’s worth it to me to embarrass myself in public by sharing the real details.
I’ve come consider this blog not just a personal experiment in daily writing, but my contributions to training the artificial intelligences of our future. I shall write women’s health into the Akashic records, even if I have to write every single day. Oh wait
Today I am moderately concerned about mg pace of healing and if I have contributed negative to it by increasing my strain modestly.
I thought it was going pretty darn well and I had physical evidence with photographs to prove it. I did however have two days of poor biometrics which I had thought was a result of pushing myself physically a bit too hard while in my two days of menstruation. I
have rip-roaringly bad luteal phases (hence the exploratory hormone therapy to bring my testosterone to a normal baseline) but I have blessedly short menstruation that hits hard but doesn’t stick around. Aunt Flow knows she gets a weekend, and it ain’t a long one, before she has overstayed her welcome.
Now I’m going to show you something a lot worse than gross pictures of an incision site. I’m going to show you embarrassingly bad Whoop metrics. And now that I see them laid out I realize I probably should have asked my doctor earlier if I needed to go back on a prophylactic antibiotic just in case cellulitis was lurking. Like my god my HRV and heart rate are god awful right now.
Now they were a bit wonky this month but this is some danger Will Robinson territory. I honestly didn’t feel bad enough that I took it seriously.
I thought “eh Whoop has been sucking” for me. I thought this is just adjustment and the high heart rate is the testosterone is kicking in and my low HRV is just adjusting to finally having some energy. I feel genuinely energetic for the first time in years.
But today at a check up with another doctor they noted that I was at higher risk of developing cellulitis given my history over the summer with the abscess surgery and the panniculitus it had revealed. The side effects of the immune suppressive called Bimzelx I use as an inflammatory dampener seems to mostly manifest in skin infections. So either I’m just a slow healer and being paranoid or I’ve got to rock on with some amoxicillin to get the ill’in to stop.
Many moons ago, when I was first attempting to get a diagnosis for why I was always in pain and exhausted, I got a battery of allergy tests. I did the “gold standard of allergy testing” called patch testing which is a form of pin prick testing designed to pick up responses that may be delayed.
It was an awful experience. I barely made it through the 5 day trial between the 100 allergen pin pricks and final measurements.
I remember begging the doctor for a way to measure early. I asked if I could take some Benadryl to take the edge off. Alas the only way it would be accurate and covered by my insurance is if I gutted it out.
You are not allowed to shower, sweat, be exposed to UV rays (no going outside) or take immune suppressants that might subdue your body’s response.
I was struggling to breathe, my entire body itched and ached, and I had a migraine so bad I couldn’t see for the stars & dizziness. It’s possible I wasn’t stable enough to have adequately consented to the test but I did get my final results.
Out of 100 common allergens tested it was confirmed I was extremely allergic to 10 of them with another moderate sensitivity set of twenty or so that I should merely try to avoid as opposed to my firm “no go” list.
The dermatologist gave me a sheet with 75 different chemical names and formats that I might encounter in the wild from these core allergens:
I instructed to search ingredient lists for these names any time I purchased a household product, personal care item, cosmetic or other item which might include these ingredients which ranged from nail care to vaccines.
It was honestly quite overwhelming. And some of the above ingredients are in basically everything. I dare you to avoid Limonene for a month.
So my husband and one of our best friends did what any practical minded engineer would do and they made me simple Google sheet where all 75 varietals could be checked if I plugged in the ingredients from any item.
I used it for years. I’d plug in the INCI from every brand I encountered into the sheet no matter what. I gave away a lot of products to friends.
Today it occurred to Alex that we should probably vibe code the thing into a proper web application using Replit so other people could check ingredient lists for their own allergies.
You can set your own allergens or click a few buttons for common allergens and “clean ingredient standards” and run a check for an all clear.
It isn’t super fancy but it doesn’t need to be. It just needed to keep your data safe, be easy to log into so you can securely check and access your personal list and generally functional enough to change and set allergens. We’ve put it on our own little domain just to see how much this will cost to run (and we’ve set up alerts so it doesn’t go bonkers) but we figured this should be accessible and simple.
And while there are other options on the market, most are bloated, overly paranoid and designed for scaring California moms rather than quickly helping people with clear preferences for avoidance and actual tested allergies. So hopefully our pain can help you breathe easier.
Some options for chemicals and irritants you can select on our app. My own settings of allergies and sensitivities
I am pouring far too much autistic enthusiasm into my pet beauty shopping column that has a roughly half and half ration “theory of appearance culture in Protestantism” and half “specific routines at different price points” but I am enjoying it.
The heavier lift is going to be the work I am putting into the individual routines for the founding subscribers who have paid good money for help and I intend to give them my absolute all. I admit I’ve put way more thought than is probably necessary into each one but it’s a joy to track down specific products and geographic needs. It’s a shame that market editor was never a well paid enough job at a fashion magazine as I am pretty good at it.
Like, of course, I have opinions on the German drugstore market and its cost effective actives lines versus the old school naturals brands and where to acquire them. I don’t have quite as extensive a sample library of the market staples on hand but you know I spent hours browsing the grocery and retail shops when I was living in Frankfurt.
And on that note I’m going to bed early as I’m healing from my various biohacking experiments and I’m exhausted even with all the effort I’m putting into wound healing it still takes a certain about of rest to actually knit things together no matter how much time I spend with HBOT or what peptide stack I’m taking (it’s a spicy boy on the way in I’ll say that much).
Every time life gets intense I wonder to myself why am I speeding into the turn? And then I look back at the last almost half decade (which is easier than I’d expected as I’ve written every day) and I feel the achingly slow pace at which we tackle the challenges of our lives.
We’ve had really big wins and really glass chewing teeth grinding bloody inch by inch progress that barely feels like a win at all.
Some pain has given me relief and some has been so heartbreaking it crushes me that it’s beyond my control. Bodies and borders are often beyond the control of mortals.
You might want bring towel though, as our handcrafted Finnish sauna will need some use before the cedar is completely smooth. Yes, that’s right, the MilFred family Yellow Barn now has a sauna. And she is a beauty. Just check out the view we picked for her.
Alex and the wonderful family who built the cedar sauna structure placed her under the back awning of the big yellow barn today. Wiring and electronics are underway as I write.
We’ve been slowly but surely turning our barn into our ideal wellness center both for our own use and eventually for the wider community as well. We are privileged with skills, capital and loads of very expensive personal experience with chronic illnesses.
So naturally as geriatric millennials it is always our instincts to turn our pain into something useful and also if we are lucky pay back the expenditures and turn a profit. Which we can then reinvest. It’s the circle of life for a generation who found the circle of life to be a tad more inflationary than expected.
The man of action putting the finishing touches on the electronics. We don’t have anything in our home systems connected to the cloud, so he built his own fully local controller with ESP32 as the brains, 60a 240v contactor for heater, RGBW LED controls UI/ final control via Home Assistant and HomeKit. You can snag the code on GitHub
In true MilFred fashion, we are building and testing everything all on ourselves. An n of 1 is good, an n of 2 is better, and if you’d like to test it out hit us up while it is a work in progress. Build in public and beta test with your friends.
Tucked under the awning of the barn so one can easily pop in from gym, HBOT or cold plunge to warm cedar comfort and mountain views
We’d like to ultimately build a space for healing, relaxation and training for those who prefer time tested modalities like heat, cold, oxygen and pressure.
Friends and family can come and test out our now very impressive range of equipment as we build this all out.
We have one of the few hyperbaric oxygen therapy chambers available outside of hospital use in the region. You can pressurize to 2 atmospheres and set a range of parameters for a range of treatments. I use it for my inflammatory condition while Alex is treating the remains of long covid. You’d be shocked what pressure and oxygen can do.
Our hyperbaric oxygen therapy chamber
If you want a work out get in some squat reps in our power cage, take a swing at the punching bag or lengthen your spine on our Pilates reformer. You can even climb around on the rock wall built into the the barn ceiling (not even kidding that is the work of the previous family).
If you are looking for a spa day you can have a sweat in the sauna, do red light therapy on your face, chill out on a PEMF mat, and hopefully soon take a dip in a cold plunge. Though if you are ambitious you can sprint across the front pasture and jump in our pond but I’ll warn you that the ducks might not love it.
The pond is fed by a creek that comes from the canyon above our house
The point being that we are building by hand and through personal experience something that improves our lives and others and that’s a pretty hot thing to do. Don’t worry, we will provide towels and robes if you do indeed take off all your clothes. Just come on over and try it out.
My husband and I are both sick. It’s the kind of “not quite respiratory, not quite sinus, not quite right” viral infection that always seems to take twice as long to clear as you expect.
Aging and stress is part of it but so is the damage we both have from covid-19 infections that turned into pneumonia. We’ve never been the same.
The good/bad news is that everyone we know seems to have the same basic set of physical degradations that we do. Varying levels of impact are met with varying levels of healthcare and wellness routines. From peptides to hyperbaric oxygen chamber therapy, no one is taking this shit sitting down.
I was already chronically ill before the world changed forever. It’s now common to have a flavor of autoimmune inflammatory chaos. I feel both less alone but much more frustrated at the crisis in American healthcare.
My medical billing codes as ankylosing spondylitis (arthritis in my spine) and psoriatic arthritis (psoriasis but it’s inside your body and it hurts!) but the tldr is constant pain, occasionally losing the capacity to walk, and the persistent exhaustion of chronic inflammation.
As we both cancel travel plans (for a charity event we’ve supported for years) and struggle to manage food and medication, I am reminded of the grief we are all carrying around.
As the world goes on with the “before times” as l memory for older generations, and the idea of any kind of positive “before” is unimaginable to the young, the grief comes and goes. The elders we stopped civilization to keep alive are dead or dying and our youth are distraught.
I remember being so angry and afraid for him when he left for cruise as lockdowns went into effect. I begged him to cancel the trip. I was afraid he would get sick or die.
He didn’t share those fears. He got stuck on the boat for an extra week or two, as no port would let them dock. He had the time of his life. I was locked in an apartment in Manhattan.
I don’t think he ever got Covid. For which I am grateful. I know far too many who did. I know many angry Zoomers grieving lost high school and college years.
Housing went up by 50% as we printed to survive the crisis. Strange times for us all and now we face the Great Ravine where the choices we made catch up to us.
My investment thesis of an increasingly chaotic world was novel when I first began and now it’s the same pitch every Tom, Dick and Harry espouses. What was once unclear is now the consensus. I am I am alive to see it and find no satisfaction in being right. The grief is all around us. Grief is for the living.
I’ve had several day’s worth of poor sleep. My sleep debt had reached a good full night’s of rest at over 9 hours. And boy did I make it up and then some last night.
A screenshot of my Whoop’s recovery page
I wasn’t asleep all of those 15 hours according to both Whoop and Apple but it sure felt like I was in deep slumber.
With earplugs and an eye mask in, I felt dead to the world. And what’s worse is I’ve had an entire month of pooor recovery and sleep
The 4th of July is now my independence from a month of poor biometrics
Now on July 4th I have been liberated from a long month of poor biometrics and awful recovery scores. And it only took 15 hours of being in a dark cold hotel room and a build up stress, exhaustion, mistreatment and other sundry social frustrations.
Mixing more strain than recovery into my Whoop cocktail for maximum life
Today really does feel like Independence Day for me. I’ve been freed from a body weighed down by physical realities and I am now free from it.
His writing captures something in my imagination with turns of phrase like “the longest stride of soul we ever took” evoking a crossing to the harsh wakefulness of reality. And as he says “it takes so many years to wake, but will you wake for pity’s sake?”
I have been slumbering in both reality and in the metaphorical ties that bound me to others. And today is the day where all Americans ponder how our founding fathers contemplated the reality of waking to the dawn of a new experiment. The American experiment continues and we must remain awake to our role within it. I have many thoughts on this which may now soon flow having awoken from quite a sleep indeed.
