Tag: Chronic Disease

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Chronic Disease

Day 1954 and Constriction

I am in so much pain today. The tendon bands that wrap from my sternum around my thoracic to my spine is badly inflamed. It’s hard to breathe smoothly when your own tendons are choking you out.

I had a fairly intense week what with the chaotic back and forth in the national policy debate around artificial intelligence. There have been swirling rumors and much back and forth. Nothing feels worse than seeing your own industry shoot itself in the foot as the stakes get bigger.

Last night Alex and I went for a long walk in the long hours of sunset. It felt as if every living creature from the ducks in our pond to horses out to pasture was taking in the perfect spring evening.

We stopped and chatted with each neighbor as being outside was on everyone’s agenda with the clear sky and warm weather. The joy of greenery had the undercurrent of concern. A dry winter will have its consequences. One of our neighbors who keeps horses mentions their hay costs had doubled from last year.

The worry and activity is taking its toll today. O am paying for all this activity. My activity costs are just as high as alfalfa. From phone calls and activism to sunset rambles through the foothills the costs are mounting. I am hurting from the good and the bad.

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Biohacking Chronic Disease

Day 1950 and No Sleep in the Long Hours

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.

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Biohacking Chronic Disease

Day 1948 and Rotational Work

I’ve been struggling with migraines since I was diagnosed with an autoimmune condition maybe six or so years ago.

I seem to be particularly struggling with them the last two months, as I work through an experiment with hormonal balancing and tapering off biologic autoimmune inhibitors.

And so I am rotating various different activities every day in the hopes of avoiding triggering a migraine, while still getting in adequate movement and exercise, as well as treatments within the biomechanical profile that I have put together with my doctors and helpful AIs.

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.

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Biohacking Chronic Disease Medical

Day 1945 and Always Adjusting

I am adjusting, yet again, to a new set of daily protocols in my never-ending attempt to improve my health. I am experimenting with peptides but don’t tell anyone. I’ve also got a hormone experiment in its second round.

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

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Biohacking Chronic Disease Medical

Day 1935 and My Current Mechanical Device Usage Patterns in End Game Taper

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.

For a year and a half I’ve been stabilizing my immune system’s reactivity with a particularly gnarly humanized anti-IL17A, anti-IL-17F, and anti-IL17AF monoclonal antibody autoimmune master blaster that is named Bimzelx.

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.

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Aesthetics Internet Culture

Day 1933 and JulieMaxxing

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.

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Chronic Disease

Day 1928 and Migraine Uninterrupted

I have been hobbled by a migraine for most of the day. I wish I could pinpoint the triggers for it as right now I am lost as to what is causing both its intensity and unrelenting nature.

I’ve gone through all the basic remedies from putting your feet in hot water to total silence and darkness along with an alarming number of Imitrax. You can’t overdue them or it makes the cycle worse so I am at the gutting it out phase of this batch.

The migraine just didn’t seem to be breaking for more than a couple of hours and if I use those hours in any kind of active way I am setting myself up for a relapse. Yesterday we made a trip to Tractor Supply and then I spent my night in misery.

I was fighting a fever as my husband managed a stomach bug last week so it might be the aftermath of whatever happened there. I wish I had more to say that wasn’t a complaint about pain but it is hard to look at a screen for longer than a Tweet response.

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Biohacking Emotional Work

Day 1920 and Walking The Dream Roads to Costco

Yesterday I was really struggling with pain. It was all I could do to scribble up an appreciation for my 18th anniversary using WordPress for my writing.

I am doing everything I can to biohack my way around a chronic autoimmune condition that interferes with my quality of life. My love for my life and work is strong.

Sometimes it is strong enough that I willingly try all kinds of therapies from oxygen to hormones. Now I am working through a hormonal treatment recovery (my 2nd attempt) as I believe it is working.

Of course, life happens constantly, which means juggling deep dark horrific pains while the business of war and the business of my own portfolio goes on.

I’ve not had good sleep this week between the excitement of huge wins and the terror of facing down another global crisis brought on my conflict.

You’d think I’d be used to it. Russian invaded Ukraine the week before I left to live in Frankfurt. I was living in Tallinn when 10/7 happened. I was also there when Estonian cables to Finland were cut. One of my best performing companies has had to work around three kinetic wars.

No wonder sleep can be elusive. Yesterday all dream roads carried me to horrors. I woke myself multiple times. You can literally see in my sleep tracking the spiking heart rate and my forced waking.

The positive side to this fitful pained sleep was being up early enough this morning to prepare for a Costco preparedness run and still arrived before their executive member hour was finished.

We rotated our basics like rice and beans. Tinned fish, chicken and other canned and stable shelf proteins are just part of preparing for a nightmare that we hope never comes. Preparedness is a civic obligation. Help yourself to take the strain off the system so we all make it.

It’s possible we are facing an industrial process cascade thanks to the war in Iran and I like us have supplies just in case. We can’t know what comes next but it’s good practice to check expiration dates and make sure you have everything from first aid kit supplies to soap. You’d be surprised at just how much processing fuel fuels the rest of the world’s production.

After all this, I was happy to get stumble into bed and take a long nap. I didn’t even wash the sunscreen off my face. I was running a deficit and wanted to have REM sleep where I wasn’t trapped in horror. Thankfully I got almost two hours of restorative sleep this afternoon and I am ready to go back to bed as soon as I can.

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Biohacking Chronicle

Day 1919 and Happy WordPress Anniversary

I feel terribly today. I do not know why other than some vague gesturing at my current biohacking experiment with hormones (testosterone & estradiol pellets inserted into my left buttcheek) required prophylactic antibiotics.

Antibiotics never makes you feel great, but here is a nice thing to get me off the hook of having to write something cogent.

I have been using WordPress so long my account would have the vote if it were human. While yes I have been writing for nearly two thousand days in row on this blog, it is not my first WordPress blog.

I wrote in college and that turned into a fashion blog which turned into an advertising and blog network. I took a break from blogging after I felt I had enough visibility but came back to it five years ago and here I am.

Now I’m going to nurse this migraine as my daily writing commitment with myself is “as long as I get down a few sentences or a couple paragraphs it is good enough.”’ And you too can be good enough to write every day for many years too if you just decide to start.

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Biohacking Medical

Day 1915 and Physiological Stressers

Last October I did an experiment to balance out my core hormones by inserting pellets of testosterone and estradiol into my left buttcheck.

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 75-100mg. Day 1748

If you are interested in learning why women are optimizing their hormones, Cate Hall wrote an amazing piece on how it affected her life. A week or two after I did my own experiment the New York Times did a long lifestyle piece on the treatment’s growing popularity.

I had been working to raise my testosterone level to a baseline minimum with diet and supplements like DHEA with mixed success which is how we ended up trialing this new pellet method. And it worked very well very fast you can see from several rounds of bloodwork.

We did not do the full 75mg but landed around 62mg in the pellet which raised my testosterone right off the bat. It then quickly dropped off from very high to comfortably high. This go around we will do a lower testosterone dose to start and a lower estradiol one as well and test within the month to see if we can moderate them better over time.

Alas I did have some complications on my first attempt as my insertion sight got infected rather badly and took over a month to resolve.

If thr last fifteen months on my immunotherapy Bimzelx has had a theme it would be soft tissue infections. I am however as far out from a shot as I can be and am planning to stop it entirely as a girl can’t spend her whole life on antibiotics.

Though I am on quite a dose at the moment as we won’t make the same mistake twice. We stitched me up and prophylactically began a dose of a very intense antibiotic with the hope that I won’t lose a whole month of the four that these pellets dissolve through fighting cellulitis.

My goal is a balanced blend of estradiol, testosterone and progesterone so I have energy and focus and maybe fewer migraines during my luteal phase. You may wonder why I share all of this personal information and I wonder why more women don’t share it. We are in a brave new world of challenges in our healthcare and environment and the more we can share with each other the better our chances at finding solutions for all of us.