Having decided to take a proper break I am going all in on making sure my body and mind get the proper signs and signifiers to just let go.
My first activity after a long mess of travel was to sleep for an impossibly long term. Whoop approvingly noted that my 11 hours and fifteen minutes was the longest I’d slept all month.
Low stress, a green recovery and plenty of hours of deep and REM sleep
I know they say you should stick to a regular sleep schedule. I generally have a firm bedtime just past 9:30pm and will sleep nine hours if I can.
But between conferences with evening events, long drives late into the night and an eight hour time difference I was carrying a sleep deficit that needed to be remedied.
My next order of business was equally taxing. I booked a spa appointment for a pedicure and a waxing. Fresh toes and a clean bikini line seemed like just the trick before laying out on a pool lounger or on a beach.
Not that anyone will be taking too close a look at me but I like feeling as if I’ve cared for the little details. Cosmetics and beauty are more of a way of appreciating my own body than adhere to someone else’s preferences.
I usually wear a very basic nude shade on my toes. I almost never do my hands but I appreciate a but I felt like I needed something more Ionian in quality or perhaps one of David Hockney’s pools.
A bit of pool blue lacquer
Normally I wouldn’t go quite so exotic on a pedicure as I’m much more basic in my preferences but if I have a chance to stare out at wine dark sea over an aquamarine pool I may as well make the most of the experience.
No one likes a gloomy Gus. The downside of chronicling a chronic disease is the risk of seeing yourself as only the illness. Then other people will see you that way too. And so your identity becomes tied with only one of the many aspects of your life, and often the worst one at that.
Thankfully most humans are centered enough on themselves to forget the occasional gloomy reality from someone outside of their daily lives.
But repetition becomes reality, and eventually we are who we believe ourselves to be because others believe we are who we say we are too.
I came across a startup who is working on one of those classic swamp problems that seems like a great idea until you are well and truly stuck in the muck with bad incentives and no good solutions.
They want to use artificial intelligence to help patients with chronic diseases or complex medical cases to codify the many little details that might add up to the clues that crack the case.
By tracking subject inputs (unstructured data) and overlaying it with the other biometrics gathered by wearables and bloodwork they can help patients. I’ve seen hundreds of variants of this over the years.
Alas this new startup seems to have discovered a flywheel for marketing that relies on the problem I began today’s post with. We believe what we tell ourselves we are and eventually other people will believe what we believe.
They have chosen to market the app with illness influencers. Yes, that’s an actual category of influencer on TikTok and Instagram. Hot girls all have vague chronic illnesses these days haven’t you noticed?
And so a community forms and reinforces the identity that they all share. They are sick. And that makes them special. This gives life meaning. And did I mention lots of pretty girls have the most esoteric and exiting problems? Click to join now!
I find this to be a troubling, even borderline dangerous, approach to anchoring a community meant to help patients advocate better for care with their own personal health records. The incentive to remain with the privileged identity that makes them special only increases over time. Women reinforce themselves into intensely held identities all the time.
I thought about reaching out to them but I don’t want to get tangled with this problem. It is one for professionals which neither myself nor these founders are aside from everyone being a patient with chronic illness.
I do not wish for my identity to be the sick woman. The woman whose life was upended by a fertility protocol gone wrong in the early years of her marriage and in the prime of her life.
It’s one aspect of my reality. I do want others to be saved from my fate so I share it. But it is not who I am. Julie is not a sick woman. Julie is a complicated individual with a beautiful life and family and portfolio.
I had my own glimmer of hope today. Though I have repeated my troubles with my medical history I have never felt it was my identity. I’d happily give it up if I find a path to wellness. And I spend so much of my life trying to walk out of my troubles.
I have walked many side roads and pursued quixotic quests to find health. And some days I even find it. Today I got very good news on a fresh round of bloodwork. I’ve felt recently felt well thanks to some changes and an aggressive pursuit of new modalities.
I never want to get my hopes up too high as this effort has been a rollercoaster of ups and downs. But I won’t let go of the hope. The mere idea that this chapter could close and I might be a healthy woman is an identity I’d gladly welcome. And I’d wish that for anyone who takes on illness as a part of their identity.
Women are at a bit of a disadvantage to men when it comes to relieving ourselves. Yes I am talking about taking a piss.
From road trips to the backcountry, we’re forced to hike up our skirts (or worse shimmy down our pants) and aim our stream through squat & thrust such that it lands where we desire without soiling our garments or surrounding areas.
You might be wondering why I’ve got such a urological topic on my mind. And I might remind you it is not as if my writing lacks for lewd colloquialisms. Some readers may recall my viral hit “dick riding” so if you are inclined towards Freud we can have a chuckle about penis envy. And today it might even be true.
I am at the moment stuck in a literal can. I am nearing the end of a session of hyperbaric chamber oxygen therapy. To be specific, my 27th session on my second round of the therapy. My first round of it was forty sessions last fall. I am rounding the end of my second set in the next two weeks.
I happen to feel dare I say good this most recent round of HBOT. It’s a marvel what it can do for the lungs and for healing wounds. However I can’t credit my current upswing just to the oxygen I’m breathing in while under two atmospheres of pressure.
I have gone off my biological injection Bimzelx after a frightful year of infections despite its excellent ability to squash down inflammatory biometrics like CRP and sed rate. I’ve added in hormone therapy via testosterone and estradiol pellets (also my second round of them). The big change is that I am heading into my forth week of injecting experimental peptides.
Those had a hell of an adjustment, but seem to have done absolutely everything which was claimed by their champions in terms of anti-inflammatory benefits. Alas I am not sure if I should discuss them too much lest I get in trouble for being ahead of the insurance rackets. My doctor supervised and approved of them which should be good enough but one never knows.
That was a long way of saying that this combination of discontinuing old expensive therapies and adding in new cheaper less expensive treatments is adding up to a lot more mobility and capacity for me.
So today I went hiking and I lifted weights. Actual under the bar squats in my own rack like an actual human. The kind of active life that I’ve been desperately trying to regain for years.
So I’ve drank rather a lot of water today. More than perhaps I should have, as here I am in a pressurized can absolutely desperately wishing I could urinate.
Alas I am waiting the timer praying for decompression to arrive so I can relieve myself in a proper water closest. And thus we circle back to the penis envy.
It’s just that I have an empty can in here with me, it’s not out of the question I could find relief in that manner. Perhaps I’d have a better treatment. My heart rate is higher than I’d like and my bladder is unhappy about the pressure. But I’ve got no aim and little room for error.
Just imagine the smell. If urine smells in a well ventilated area like a roadside rest stop, just imagine how it might smell in a pressurized tube. It’s not a place you want to fart I’ll tell you that much. So wetting the blankets, upholstery, and my clothing in here would be a disaster. I’d never get the smell out.
So here I am laughing to myself about wanting to piss in a can. Maybe a good reminder to buy one of those hiking helper devices for women. You never know what kind of situation I may find myself in this summer if I can actually move my body comfortably again.
I seem to have accidentally fallen into polyphasic sleep. Those experimental not for human consumption, long amino acid chains that everyone is doing n of 1 research with?
Well, my n of 1 experiment seems to be yielding the occasionally odd sleep pattern. I’ll be up early after having a night of sleep that feels more nap than fully weighed sleep hours.
Think out by 9pm and awake before dawn. I feel fine, so I pack in the full day till around 3pm when lunch digestion & the general slumps have me saying “maybe a short nap.”
I’ll find myself popping back up at 6pm with an eye on dinner. Another accidental siesta has stolen the afternoon hours back from the long evening hours to which I’d applied them.
I won’t have any trouble going to sleep on time early. This pattern seems to be applied to days where I have a lot of physical strain.
If I get in a workout, a long shower, extra walking time, and other physically demanding tasks in alongside my mental work I end up needing the nap and still fall asleep on time.
If I stuff too many experiments into a given day, I’ll almost surely end up with a migraine. Even if I only do one sometimes I get unlucky. Red light and infrared are, of course, a classic way to trigger a migraine, so I try to do those carefully and when my heart rate is stable and low.
Of course, sometimes you need to get your heart rate up, and there’s nothing you can do but get your exercise and hope it won’t trigger a migraine. Afterwards exertion when I have a need to get down my heart rate, I’ll try to mix that with my hyperbaric oxygen chamber therapy.
I’m in the middle of my second round of HBOT treatments and enjoying seeing things like my VO2 max improve. I’ll be tempted to do something like go for a longer walk to test my lungs and trigger some neck compensation, and then I’ll be right back where I started with a migraine.
I’m always rotating something in and around keeping my brain from feeling the pressure of my body’s adjustments. There is no stable equilibrium just the constant pressure to find a new balance.
I am trying to get healthier, but that suggests it is even an achievable goal. It would be wonderful to get back to endless working hours or even just eight hours on my feet.
Every time I make a tweak to my routines and I see a change in my biometrics, it’s becomes eventually cause for concern. There’s no stable equilibrium to be found, and I know that’s part of life, but I’d like a stable equilibrium that’s a little bit better than one day at a time or ideally a couple weeks at a time.
Take my experiment with Bimzelx. Even when I achieve an outcome like getting my CRP rates into the normal bounds, it came at a cost that is simply too high to maintain. I had four separate incisions and surgeries last year from soft tissue infections.
What good is a drug that tamps down my immune system so much that I need to always go under the knife? It was like Goodhart’s Law came to haunt me personally.
I am going off the biologic (I am 12 weeks from my last injection) and already seeing change in the wrong direction. Not enormously bad but my immune system will pop if it’s not locked down.
Yet there’s very little I can do except keep going and hope that the balance will be more manageable, as I don’t know that I could have another year like 2025 again.
I set out trying to reboot my immune system last year, and it certainly seems like it worked. But can I keep the numbers in a place that are low enough to let me live, and ideally live with fewer medications?
I am constantly working against some new tweak or some new problem, and even little gentle experiments like a Pilates reformer workout or 10 minutes on the trampoline can turn into a full-day migraine if I am not immediately able to tamp it down. Thoracic pain will pop up crushing my breathing if I take a nice slow hike in the pastures beyond our house
Yesterday I was firing off zingers left and right like some kind of Internet Yosemite Sam hollering like cartoon frontier gunslinger.
Hair trigger with a side of facial hair
I am displeased with how silly things have become as I ponder the downsides of things falling apart and the upside of accelerating into the turn. That darn rabbit though right?
So this afternoon with some intentions of productivity on my mind, it only makes sense that I passed out sometime after lunch. I got an hour of deep sleep in the mid afternoon. Which is upsettingly more than I got the entire night before.
Don’t mind the alarmingly high heart rate
My heart rate was racing but my body did not care. I’d been exposed to too much autonomic stress the past couple of days and it was just done with letting that happen.
They say Sunday is a day of rest but that is because we are meant to use our response to consider the things that matter most in life. Family, faith and in some cases football. But I spent it passed out in a dark room without a thought in my mind. I hope it helped.
Apologies that today’s post is going to be only partially organic human produced writing. I’m a tad more focused on cobbling together my current end game which feels promising.
I am now dosed off my current biologic. Tomorrow I go in to run a bunch of bloodwork but I feel more stable than expected for 11 weeks since my last injection.
I take it for psoriatic arthritis and active ankylosing spondylitis. I do not recommend this devil of a medication unless you intend to reboot your entire autoimmune system (which I did), can tolerate a lot of soft tissue infections (which I couldn’t) and have tried everything else. Which I have. And this past year was brutal fighting off the side effects but I think I might actually have a shot at remission.
I am now layering a bunch of mechanical interventions to rework years of compensatory patterns my body has used to manage the constant pain in my thoracic spine and other areas of inflammation including my sternum, rib cage and joints.
But after seven years of trying everything I can to recover from prednisone to methotrexate to Humira and Taltz to literally just not eating for ten straight days (don’t worry I was supervised) my inflammatory biometrics are coming up clean. The pain isn’t fully gone but I think the pain can be diminished by quite a lot as I rebuild.
So it’s now or never if I want a shot at life without suppressing my immune system. I have no idea if I can do it and I may need to dose back on something else but at the moment I’m managing with a new arsenal.
Here are the artificial intelligence bits of the mechanical interventions I am leveraging. I am using a bunch more than the two below but it’s what I’ve got so enjoy.
1. Hyperbaric oxygen therapy (HBOT)
Mechanically, HBOT does a few things that line up with what my data is showing:
More dissolved oxygen in blood and tissues Breathing 100% oxygen under pressure increases the amount of oxygen dissolved directly in plasma. That can:
Support tissue healing (skin, soft tissue, surgical sites)
Help inflamed or energy-starved tissues keep up with demand
Autonomic “downshift” for some people Research is mixed, but many people (and some small trials) show:
Lower resting heart rate and subjective anxiety after sessions
A tilt toward parasympathetic (rest-and-digest) dominance In your data, the days after HBOT blocks are exactly when we see HR drop back toward baseline and Recovery go green.
Anti‑inflammatory & microcirculation support (early evidence) HBOT can:
Modulate certain inflammatory pathways and oxidative stress
Improve microvascular blood flow, which matters for both autoimmune-affected tissues and healing pelleted areas / irritated skin
In your context (autoimmune, infection risk, prior soft‑tissue complications), HBOT looks like it’s acting as:
A structured, time‑boxed reset that helps your heart rate settle and supports healing, without adding mechanical strain.
You’re already doing the key safety piece: using it under medical guidance and watching how HR, Recovery, and symptoms respond day-to-day.
2. SCM (sternocleidomastoid) muscle work
The SCM runs from behind your ear to your collarbone and is heavily involved in:
Head and neck position
Breathing assistance when things feel tight
A dense web of nerves and fascia near the vagus nerve, carotid artery, and jugular vein
Working on SCM (gentle massage, trigger-point release, careful stretching) can impact:
Perceived heart‑rate “rev” and breath tension Tight SCMs show up when:
You’re chronically bracing, in pain, or anxious about pain
You’re using accessory neck muscles to breathe
Releasing them can:
Make breathing feel less effortful and more diaphragmatic
Reduce that “I’m keyed up in my chest and throat” feeling even if HR number isn’t wildly high.
Headache/migraine and neck-related pain SCM trigger points can refer pain to:
Temples, behind the eyes, jaw By easing those trigger points, you sometimes reduce:
Migraine severity/frequency
The background neck/jaw tension that keeps your nervous system on edge
Autonomic tone (indirectly) The area around the SCM is rich with baroreceptors and vagus-adjacent structures. Gentle work there can:
Encourage a downshift in sympathetic drive (less “fight-or-flight bracing”)
Pair nicely with breathwork (especially long, slow exhales) to reinforce parasympathetic activation
In practice for you, SCM work + HBOT looks like a two-pronged calm signal:
HBOT: physiological support + autonomic softening from the inside
SCM: mechanical and sensory de‑bracing around your neck, jaw, and breathing
My Whoop is seeing HR and Recovery respond in a way that suggests this combo is genuinely helping my system get out of that “stuck high-gear” state.
Everyone is maxing now. You can barely read a proper broadsheet without the Zoomer coinage crossing your transom. Maxxing is everywhere.
Maxxing means maximizing a certain aspect of one’s life. Comes from “minmaxxing”, a term for extracting the maximum output from the minimum input.
Urban Dictionary gives its history though the minmaxxing, though lately I’m not sure minimum input is actually part of the Maxxing game.
Maxxing is now maximizing every aspect of wherever you are focusing on improving. And boy do people want to improve across all possible vectors and all at once.
Is a geopolitical conflict all about Chinamaxxing? Is an influencer Looksmaxxing? Is a certain venture capitalist Retardmaxxing? It’s a little uncomfortable all around but time is short so why not go all gas no breaks.
I myself have noticed a kind of JulieMaxxing creep into my life I refuse to settle for a set of interconnected yet impossible to tease apart health issues.
From hyperbaric chamber oxygen therapy to everyone’s favorite semaglutide I intend to do it all. The same goes for face. I do an ABC+SPF routine just for starters for my skin. I am going to JulieMaxx if only so I can get back to Minimum Viable Julie.
I am no spring chicken. That’s why we bought some spring chickens this weekend. I kid I kid. I do however have a forever 35 face. I come from a line of women who age well sure but I have very consistent habits.
I’m lucky to have an ageless look. My husband would say I have a forever 28 face as I somehow look better having crossed into my forties than I did when we met at 28. Meanwhile my husband has gone from boyish wonder with full head of hair to distinguished grey beard with a bald pate.
Now sure husbands are supposed to say nice things like “no honey you haven’t aged a day!” Except I really do seem to have benefited greatly from genetics and routine.
He may be right, not out of any urge to flatter me, but simply because some women do look better with a little age on them. I looked young with a rounded features right until I looked ageless somewhere in my late thirties.
Alex and I at 29 where you absolutely can spot my pre-retinol skin Alex and I two weeks ago before touring the West Wing during our trip to D.C
I don’t look all that different when I compare and contrast between photos from then and now. I gained and lost as much weight as a Kardashian (more than once damn you prednisone and bless you semaglutide) but my face has somehow retained its plump without a maximalist approach without gaining wrinkles. I’ve lost the fine lines.
I didn’t start Botox till forty and I’m grateful as I need much less now. I didn’t pull anything out either even when cut looks were all the rage. I’m glad for my rounded features now.
But I have added in more to my beauty routine as I age because I enjoy it. I found it humorous when a 31 year old pursing a doctorate in clinical psychology said out loud what I’ve darkly joked about with girlfriends for years. It’s really hard to be completely controlled.
For a year in my early 20s, I was also spending literally all of my money on a psycho 100-step skin-care process. Looking back, I didn’t have the executive functioning to be successfully anorexic, which is what I also wanted. But I did have the discipline to enjoy this complicated multistep ritual of the skin care. I found it satisfying.” New York Magazine
Now we can all joke and say she shouldn’t be in practice but I never felt I could pull off an eating disorder either even though I often wished I could. That eating disorders are dangerous enough to kill you isn’t the point. It’s being able to control your body enough that you can kill yourself that we desire.
I hated that no matter how much effort I put into diet and exercise I could never achieve the standards of waif like beauty put out in the heyday of Anna Wintour’s heroin chic era. Millennial beauty expectations were a bitch and I could never quite work up the control to hate myself. Sure I got really fit with a heck of a squat but I always had to watch every single macronutrient and instead of skinny I got lean.
And while I appreciate a good Molière joke about The Imaginary Invalid, weight was never the issue that got me in trouble.It was hormones that got me.
So I knew poor health with a healthy weight and I knew poor health with a lot of weight gained trying to fix the poor health.
I will never allow myself to get over the BMI band again to avoid the medical discrimination I faced when I gained weight while on prednisone.
Alas no my autoimmune condition was not mitigated even an iota by weight loss. I had it before I was fat. I got fat treating it. I still have it now that I’m at a healthy weight.
But the desire to maximize your looks and your health always intertwine with women. Increasingly it does for men too. Body dysmorphia respect neither sex nor gender. I doubt it will ever again.
Beauty is a skill set. And some of that skill set is now pharmaceutical in nature. And if we are honest, it’s been that way for a few decades. It’s just that everyone know about it now. The network age comes for us all.
