Tag: Illness

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Biohacking Chronic Disease Medical

Day 1629 and IL-17 Changeover Results

I need to do a better job at tying up loose ends. I’ll bring up a change and then forget to do updates until I’ve concluded the experiment.

My January health reboot included changing my IL-17 biologic injection (moving from Cosentyx to Bimzlex) in the hopes of reducing my soaring inflammation markers has its last loading dose today. I take it for my psoriatic arthritis and ankylosing spondylitis.

I got a fresh round of bloodwork done last week and am pleased to have seen my CRP & my sed rate at the best point in some years. Subjective metrics like pain and energy are usually leading indicators for my erythrocyte sedimentation rate and C-reactive protein coming down. And that is my priority with pharmaceutical choices and holistic ones.

I have had a lot of negative side effects that were new to me that did show up during my Bimzelx transition. I got a meiborn gland infection on my eyelid twice. I had to get it sliced and lanced TWICE! And I took two rounds of antibiotics (which I love as I feel terrific when I’m on doxycycline or amoxicillin).

You’d think needing that down while in Istanbul would have been scary but no it was informative and fun. And I was able to learn more about hyperbaric chamber oxygen therapy which is the next big adventure coming up.

So it’s looking good for Bimzelx even though I’m not wild about how my immune system has reacted. The eyelid stuff is scary. I’ve had folliculitis in odd places so I’ll need more topic antibiotic washes presumably. My scalp has not taken it well.

Other oddities of note. Bimzelx also hurts way more than any other injection I’ve ever gotten in my entire life. I’ve done methotrexate, all the hormones for egg retrieval, multiple biologics (Coesyntx and Humira) and nothing comes close to this kind of pain. It’s a big vial and an auto-injector so you have no control so you must muster up the willpower to hurt yourself for 45 seconds of burning pain. Because you can’t restart you’ve got to do it. I scream. It’s bad.

It does appear to be working so we shall see how the change from loading dose to regular every two month maintenance dosing goes. I don’t know if I have multiple weird infections a year in me but I do like being able to exercise and have more work capacity. I’d say on balance it’s worth it for me.

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Chronic Disease Community

Day 1626 and Sleep It Off

I am coming off multiple days of in-person interactions. It has been nice to go from Costco to committees to backyard bbq.

I am tired. I intend to rest and alas because I am doing things in the moment I have had too few moments for even a brief rest. It has been a good time.

My HRV and my RHR are way down and way up respectively. I need that to reverse so I’ll sleep it off.

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Biohacking Chronic Disease

Day 1622 and Pulsed Electromagnetic Field

On a bit of a whim, Alex bought “on the go” PEMF Infrared Mat from HigherDOSE.

This is the year of acquiring mechanical intervention medical equipment for us.

Yes as biohackers we trial a lot and some of it is less woo-woo than others. Treatments like hyperbaric chamber oxygen therapy have significantly more clinical data than say pulsed electromagnetic field treatments.

It seems easier to send electromagnetic waves at different frequencies than create a sealed oxygen chamber but consumer is weird and the military and elite athletics tested HBOT whereas mere hippies played around with PEMF.

A temperature setting swaps for 4 separate vibration settings Delta Waves, Theta Waves (Schaumann Reponse, Alpha and Beta Waves

So it’s qualia only here on the good vibrations but I am excited to try it out. I can’t exactly feel the vibrations unlike in other clinical settings where I’ve experienced much more intense (it’s measured in gauss or Tesla) but infrared warmth is a nice experience even if the vibrations don’t do much. But I will report on it.

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Biohacking Medical

Day 1617 and Trap Queen

I am struggling with some biomechanical issues in my upper body that are intersecting poorly with the inflammation of my ankylosing spondylitis and psoriatic arthritis.

The upper fibers of my trapezius muscles are killing me. I presume I have some soreness and pain as I’ve been incorporating a new slow progressive full body workout program. But a little digging is making me reassess that conclusion.

Via Physio-Pedia

I’ve been patiently working the problem of my inflammatory issues for literally half a decade and yet I am regularly finding new information thanks to the wonders of deep research products.

Somehow I had never really researched enthesitis despite it being a fairly core symptom in my case presentation of spondyloarthropathies.

It is an inflammation where tendons and ligaments attach to the bone and I have it something fierce in my intercostals and trapezius muscles.

There are many other areas where enthesitis can occur, he says, including the area where the ribs meet the breastbone, the back of the head where it meets the neck, and in the spine in the area closest to the skin. Creaky Joints

It’s possible current pain not delayed onset muscle soreness at all. It’s enthesitis. I don’t know if my new IL-17 inhibitor is working as it should but the strain of my new workout regimen is just a part of a wider issue in my condition. I’ve got a deep dive running on exercises but right now I’m going to take a muscle relaxer (magnesium) and lay down.

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Medical

Day 1615 and Ounce of Prevention

I had a preventative care appointment at the doctor today and I came away from the experience wondering why I bothered.

I felt like a fool for checking on something before it had become a problem. It was merely a concern and no answers could be found without a substantial escalation in investment and time. Which I chose not to dod.

I will still get a bill whether it’s 90 seconds or 90 minutes which I do understand. But does it have to be so “escalate to maximum” or “just ignore it” as the poles of preventative care? Can’t it be more of a spectrum of options? And because “fuck you that’s why” I have no more certainty on the problem than when I started.

And that’s not how I want to experience the care and maintenance of anything under my care in my life let alone my body. Our house, our relationships, our business, our car, heck our chickens deserve better than “don’t know why you bother” care. I bother because I care.

We have a home maintenance sheet excel, a seasonal rotation system for disaster supplies, and an inventory management system for key household goods.

Yeah, we are that kind of family. My husband has opinions on label makers. I have strong opinions on sweater brushes and leather are.

An ounce of prevention is worth a pound of cure.

Sure that’s a very Mary Poppins kind of approach to life but I think it’s a worthy one. I want to live a life where I am responsible to my own life.

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Aesthetics

Day 1604 and First Weekend of the Season

It is so beautiful today in Bozeman it almost doesn’t feel real. It’s warm but not hot. It’s sunny but we have fluffy clouds breaking up intensity. Cool breezes waft in and out without ever really turning to wind. I hope our entire summer has this weather.

Because of the holiday weekend the town has fully switched into “seasonal” mode from daily New York flights to way more availability at restaurants and service. One of Alex’s friends from college is headed into Yellowstone with his whole family from grandparents to kids.

Mountain towns make as much money in the summer as they do in the winter so you always wish for fluffy snow and cool clear summers.

The snowpack is smelting, the grass is green and the sky is oh so blue

While Yellowstone is worth the travel, I appreciate being able to work and hike all flavors of public trails from city to state in Bozeman.

On days like today I want to fully throw myself into a Bryan Johnson super adherence biohacker as I want to be able to enjoy as much of our summer as I can outside.

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Chronic Disease

Day 1599 and Sadly Cold

I would love to have something to say today. I have a migraine. My circulation seems odd. I’ve got on 2 pairs of wool socks on, two layers on top and I’m underneath two down blanks. And I’m still cold.

Complaining about one’s body is such an unappealing habit and yet when the pain comes for your attention it has the gravity of a black hole.

I don’t want to be a bore. I fear every time I am trapped in a bad bodily cycle I am boring myself and others. It’s been six years since I was diagnosed with an autoimmune condition and so much of it has been chronicled here.

And yet no matter how much I throw at health and wellness I still find myself cold, sad, hurting and without any kind of cure.

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Biohacking Chronic Disease

Day 1598 and Routine in Chaos

I have been contemplating “an ideal routine” as soon as I felt the pressure of showing up for first grade. How to manage the energy the outside world requires from you while making sure you have done everything possible to manage your body to produce adequate energy.

Morning routines, what’s in her bag, every day carry, and optimal packing strategies all derive from a need to see how others are coping with the demands of life. You can aspire to various ideals of fitness, nutrition, style and parenting if you could just get the right routine with the right tools. Right?

I’m aspiring to restart learning new toolsets for building …everything. From design to marketing software to muscles to my hormonal profile. Building the life you want is deceptively close if you can manage yourself.

Life feels malleable at the moment. And who is going to stop me? Maybe I accidentally fix a problem for myself and find I’ve got a tool or insight that might benefit you. The chaos of old ways fall apart means new routines and folkways must be built.

I don’t want to betray myself by overreaching and pushing as I am so often finding hard limits the hard way. I like to go hard and rest. But reality has become so much less reliable that I wonder if I must compensate even more for the chaos with steadying flows of my own.

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Chronic Disease

Day 1594 and The Creek Don’t Rise

I’m not sure where my mother picked up the slang “God willing and the creek don’t rise” but I had it regularly to suggest a thing shall come to pass a “if nature and God” are willing.

It’s it’s got a hint of Appalachia in its origin story and then tumbles over into a Johnny Cash cover of a Jerry Reed country tune (probably where my mother learned it as she loves Cash) before settling into a Spike Lee documentary about the water engineering challenges that have brought such misery to New Orleans.

It’s been pouring in Gallatin County all day. Our already high rivers are looking like they may cause troubles. Friends who fish were concerned the muddy headwaters weeks ago when I was caught in other unexpected spring showers in Colorado.

I am afraid the moisture is kicking up mold in our house. We’ve spent months remediating the problem so it weighs on me to consider the possibility. I woke up covered in hives and eczema.

I took antibiotics and Benadryl and it kept getting worse. I showered with nothing but unscented Castile soap hoping to mitigate the outbreak. That did more.

I have an event I’d like to attend this evening along with a houseguest who I very enjoy much enjoy so it frustrates me when the creek sees fit to rise against the banks that contain the river of my life.

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Chronic Disease Emotional Work

Day 1589 and Disagreeable

I am in a lot of physical pain and I have been cranky about it all day. I just did not have the energy to self censor my discomfort either. I spent a lot of the day in bed popping off.

Because people are polite I only ever get rewarded for being spicy. I’m sure people harbor all kinds of uncharitable opinions about people who are mouthy, especially women. But I mostly find you can say quite a lot. Especially with your ingroup.

In fact being disagreeable is tolerated, and even celebrated, in almost all public forums. Hard truths, straight acts, unpleasant realities tend to be celebrated. Truth telling can become someone’s persona even when nothing is wrong.

But watch out for that dark path. If you care too much about broader opinions of yourself you can easily become what is called audience captured in which your persona gets adapted to what gets a response. Modeling your life as get it can go very wrong for people.

I felt for comedian John Mulaney who got typecast as the affable guy and absolutely hated being the bad guy for his various addictions and personal life complications.

In his special “Baby J,” Mulaney reflects on the burden of his public persona: “Likeability is jaaaaaaaail,” summary via Perplexity of a much better substack piece

In some ways, playing to type is just cognitively easier for everyone. A social contract if you will. Being able to show more than one side of yourself shouldn’t be shrugged off as people pleasing nor is being disagreeable always a sign of bad temperament. Humans contain multitudes even if everyone plays to type.