Tag: Inflammation

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Biohacking Chronic Disease Medical

Day 2028 and Get Better Sometime

I’m going on week three of a crash out in my autoimmune situation and I’m not going to lie it’s scary.

My spinal pain is flaring, my migraines are relentless and I have no timeline for a resolution. I’m not even sure what’s wrong. Did I just overwork myself?

My symptoms are getting better albeit unevenly. And it’s just not very fast. I had many steps forward in my case in the last year thanks to artificial intelligence aiding diagnostics and protocols.

So having a few steps back worried me. As if I can’t know consistently what is going on in my own body, can I ever I trust my health?

I am in a perpetual loop of questioning how hard I can push. Clearly the hard push I did for spring was too much but where is the balance? I feel good and I exercise and then I’m crashed out. I feel bad and keep calm and I’m still crashed out. Cause and effect are not clear this last month.

It is always a confusing experience for folks who don’t see me as sick. And I forget as I’m very open about managing a chronic disease. And I have looked almost indomitable most of the year. Bets from years ago are on a winning streak and it feels amazing.

So there are people new to my life who have mostly experienced a fully functional globetrotting Julie. Why would they know I manage that at a knife’s edge? I haven’t had extended down time till this summer. So now I’ve had three weeks of struggling, it’s a tentative “hey feeling better?” line of questioning. Sort of? Depends on what hour of the day you catch me. I keep thinking I’ll be better when I schedule work and then I am not.

And I hate saying “No I’m not really feeling great and I don’t know when I will.” That’s a scary answer to anyone who doesn’t live with a complex chronic disease. It sounds like I’m unreliable when in truth I don’t want to commit to something I can’t be sure I’ll accomplish.

What should I say? “Don’t worry I’m a cripple so being sick and down is sort of a semi-permanent state. It’s fine!

What about “it scares me more than it scares you. You can move on. I have to live like this.” That is some TMI boundary crossing for most, but I’d also prefer people get an honest answer. There is no guarantee of ever getting better. It’s called chronic for a reason.

I used to try to be a little gentler about this reality. Thanking folks for asking and explaining there is no “better” just yet. I say maybe one day we will figure out what’s wrong and find a cure. And I mean it. I work so hard at getting more functionality back. And sometimes I have functionality for an extended periods. That’s been amazing for me.

I’m less reticent than ever to articulate that chronic illness is quite common. Yes I have a complex case and yes it’s cause is tragic (we tried to have kids) but it’s not a get better situation like a cold. It’s a sometimes it’s better sometimes it’s worse disease profile.

After the pandemic the sheer number of semi-fucked post viral covid adjacent chronic illnesses I encounter are so numerous, I figure why sugar coat it? It’s a get better sometime situation for most of us. I just hope that sometime is soon. So vote for the right to try and the right to compute. For all of us. So that sometimes becomes now and that now becomes permanent.

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Biohacking Chronic Disease

Day 2018 and Getting in Writing Reps In My Pressure Tube

I am a wreck. But now that everyone is discovering the value of daily writing (get in the repetition before the AI harms your skill), I have to gut it out as usual when I’ve got little in the way of cogent thought.

In an attempt to recover, I’m in a hyperbaric chamber sucking back oxygen under two atmospheres of pressure and I still can’t get my heart to stop pounding. Damned drugs.

It’s 100 degrees outside which probably doesn’t, help but even with oxygen, an eye mask, a soothing Endel NSDR session delivered by Bose noise canceling headphones, I could not get my heart rate under 100 consistently.

I wish I had a better theory than having over extended myself by traveling from mountain to swamp and desert to sea and then back again. Work and family call me, and they are not ever in the same place. It’s been a season of enormous wins but the price is being paid now.

It would seem that I’ve found my way to my first full system cascade failure since I went off my IL-17 inhibitor and onto a peptide regime with hormonal support.

I’ve had four glorious months of being able to act like I’m a reasonably healthy woman. Then I returned from a Fourth of July celebration in Utah to Montana and immediately fell apart.

My physician suggested the dreaded prednisone as well as a cycle of doxycycline. Goody goody gum drops. Both notably raise resting heart rates.

Want to see how bad? Get a look at this chart of horror and pharmaceutical malice. I woke up around my usual time and my heart has been pounding all night (no wonder prednisone makes people go nuts), my HRV registered as an 8 (average at my age should be 40-50) and this only registered as kinda in the green because I’ve had a week of it being in the mid teens. So yeah what the actual fuck. What do I even have?

The worst Whoop recording I’ve ever had

Maybe I just need to quietly let the steroids tamp down any inflammation and let the antibiotics kill off any bacteria that have decided to colonize me but I won’t lie I am terrified that those good months were a fleeting moment and this is my new normal.

Thankfully I know in my rational mind I’m in my luteal phase of hormonal horrors and I’ll get bloodwork as soon as my menstrual cycle lets me bleed.

It’s likely I’ll be in need of some new hormonal pellets sliced into my ass and any infection or inflammation is just a function of having gone a bit too hard and too fast in my glee that I can feel good again.

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Aesthetics Biohacking Travel

Day 1979 and A Bathing Suit I Can Now Wear

My health must really be on the mend. Not so long ago (a thousand days or so) I could not tolerate wearing a bathing suit as the compression of the material hurt so badly.

Heat and sun only added insult to injury as my body struggled to manage inflammation. I had purchased a bathing suit I loved that became known as “the bathing suit I never wore” as I was simply packing it as an aspirational garment.

It was packed carefully in my suitcase trip after trip, in the hopes that I might have a good day without pain. Years went by and I never wore it. It was a sad joke. Not for aesthetics or vanity, but for the cruel pain that poor health puts you through.

If you go through the tags on the blog for ankylosing spondylitis you will see a journey of some length. The blog chronicles it from its starting years and, one day I hope, to its finish. I’ll may never be cured but I am finally living again.

The pale blue Ionian coastal waters protected from development and over traffic contain a beautiful array of fishes

I know it sounds silly that being able to wear a bathing suit without pain is a huge milestone, but I was unable to participate in the most basic outdoor activities with my own family.

A bathing suit was an aspirational garment not because I too afraid to be seen in it, but because the compression along my rib cage and spine hurt so badly.

And today I was on a boat for four straight hours including jumping off into the warm aquamarine waters of protected coastal Ionian water.

Nothing hurt at all. And I am not on any immune suppressant drugs at all at the moment. I am not on antibiotics. I am on a simple peptide regime. And now my swimsuit is being worn so often I need a second one so it can dry.

A halter top from Norma Kamali and a hat from a tourist shop.

Categories
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.

Categories
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.

Categories
Medical

Day 1884 and Post Op Shop Bop On The Head

I am a stricken by the malaise that comes with minor injuries. Yesterday I had some dental work done (with a laser) and today is all wretched inflammation.

An affliction that requires recuperation gets me down as I can’t say I’m really miserable or in much. I live with worse pain whenever I flare with my ankyloysis. I just feel pretty shitty and my brain is slugging slowly through the muddy waters of stress toxins.

It’s m the mixture of stress, antibiotics (doctor recommended prophylactic course given my soft tissue infection risks of my biological injection) and the tide going out in the cortisol. Being flooded with cortisol is not just a meme.

And so I don’t recommend being this in this state, but you also need to do proper care and maintenance of things like healthcare. And your teeth are a core part of this. After a certain age you can’t just ignore problems. And so I’ll be on Twitter as I can’t concentrate well enough to do much useful today. And my husband will kill me if I do any more cosmetic shopping.