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Biohacking Chronic Disease

Day 1810 and Bodywork and Open Sourced Tactile Physical Data

I had a really excellent massage recently. The body worker really got under some of the tension points in my body and the compensatory patterns I was hoping for them to work through. I felt like the flow of my energy was reset.

This type of relational work between two people, one with body issues and another one who knows an efficient path for soothing them, need each other. I need relief and they need a payment that reflects their expertise.

Typically this has been labor paid in some increment of time. I paid for an hour long massage but I’d be willing to pay for more hours and the knowledge and capacity to execute that work on myself or through another body worker or tool.

I’ve got a Theragun, a Tiger Tail, lacrosse balls and foam rollers and I try to work through knots and pains. But I know way less than your average massage therapist or Alexander Technique practitioner so these tools are in the hands of a poor craftsman.

I would love for there to exist some type of Open Source Bodywork Database. I’m thinking work flows, anatomy training from video to textbook and routines input by every type of knowledge tradition and patient.

There are humorously already types of open source startups that work on body based API calls. One is called buttplug.io so you get the idea.

I’d love to see workers get paid to contribute their video, audio, and tactile experiences to an open world and ideally be paid a percentage each time it’s used.

Imagine being about to boot up this massage with an automated massage options. Or open share the repo with a therapist with less experience looking to learn. You pay the therapist trainee and for the routine and everyone benefits.

It’s a bit of a fantasy now but I’m sure we are closer than anyone realizes to being able to train these movements into automated systems. Imagine celebrity osteopaths with programs built into something you can use.

I would prefer this be an open source program for human body knowledge so that we learn mechanically the many physical routines and options that exist to make our bodies function better thanks to aligned incentives for everyone to participate. Dare to dream right?

Categories
Chronic Disease Emotional Work

Day 1806 and Trying Not To Upset My Proverbial Applecart

I have had way too many minor (and major) health problems emerge over the course of 2025. Adding in personal life tragedies (the death of my father) and I had a challenging year.

So I trying to keep the last few weeks of the year crisis free. I have already pulled myself out of the day to day to try for a slow wind down of the year. No holiday parties or appearances for me. I am gone.

As I slow down and put distance between myself and the world, I maybe stupidly see it as an opportunity to nudge myself on little health promoting efforts.

After the year I’ve had, I so desperately want to see improvements. Even if simply not collapsing into another infection cycle is a win.

I’ve been trying to consistently work on body basics like muscular compensation patterns and getting more steps each day, but I’m so terrified that even a minor miscalculation in exertion will upset my proverbial apple cart.

I went for a walk on a high mold count day and reached for prednisone. I’ve been teetering on the wrong side of recovery for so long I don’t think I can recall a genuinely good day. My sleep is similarly impacted. I want to have a long night of deep sleep and dream cycles but the best I can manage is just a long night.

Categories
Biohacking Chronic Disease

Day 1786 and 40 HBOT Sessions Later

The days becoming shorter has hurt my attempts at getting out in the sun for a walk every day. This matters to me as I’d like to get regular readings of my V02 maximum and my heart rate. I rushed out without sunscreen to get in a mile.

I hit an important milestone in my current biohacking regimen this week. I made it to my 40th session of hyperbaric oxygen chamber therapy or HBOT. I began on September 13th and did session 40 on November 20. I only traveled once during this period (a five day trip) so I could have fit it all in within a two month period but I was consistently doing two hours a day.

I intend to get bloodwork for comparisons next week, but in some ways this was a terribly experiment period. I had a small procedure to insert testosterone and estradiol into my left buttock which turned into a saga when I got a skin infection. Not the procedure’s fault and I’m glad I did it as my numbers are already better.

Fortunately HBOT is renowned for healing soft tissue infections so if I was going to suffer for having compromised immune health across my skin biome, then at least I had the state of the art treatment available.

We didn’t purchase the HBOT for its skin benefits. In fact, I didn’t even know I’d be have skin immunity issues. They began with my new IL-17 inhibitor which I started in January We’d acquired the HBOT around the same time but I had no idea how challenging Bimzelx would be. It could have gone worse.

We had originally acquired the HBOT as several of our friends and acquaintances had succeeded in managing impressive inflammation rate reductions as well as progress with a slew of autoimmune issues from long COVID to mold toxicity. The kind of troubles we only test in fancy labs with extreme athletes or the enterprising technology brother.

My wound has mostly healed save a small lump, my V02 max has improved despite virtually no exercise (hard to do much cardiovascular exercise with an infection in your posterior chain) and I have overall found the balance of improvement in my energy and pain to be significant.

Thanks for noticing Whoop

If I could just get a month without a health crisis where I have enough energy to workout consistently I just might make some progress. So if I disappear for a bit that will be what I’m doing. Once I’ve got bloodwork I will share obviously.

Categories
Biohacking Chronic Disease

Day 1732 and It’s Getting Hot In Here So Take Off All Your Clothes

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.

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Biohacking Chronic Disease Medical

Day 1688 and Deciding What To Outsource to Artificial Intelligence for Health and Wellness

One of my Twitter mutuals recently published an artificial intelligence prompt for making an adaptive fitness coach which works inside any of the major large models.

Having recently been saved from going septic and a gnarly deep tissue infection thanks to clever diagnostics from the commercial chatbots I am considering what else they might be able to help me along with in my day to day.

Being failed rather regularly by doctors over a decade of chronic illnesses has made me skeptical of the institutions in American medicine. But having one doctor (a dermatologist) miss a glaringly obvious differential really shook me.

Her dismissal of the details and particulars wasn’t malice, but a function of the systemic inability to put enough attention on the details of the person in front of her. Attention really was all she needed ironically.

I’m sure she didn’t set out to be that kind of doctor, I’d bet she hates that it’s all 90 second visits and Medicare coding and making money for the private equity group who owns the clinic. I feel for her. She surely wants to get back to doctoring.

No one can spot every detail and retain the complexities of every case. Especially one like mine. But a computer has a much better shot at mimicking Dr House than I do at finding a Dr House for myself. And it certainly has a better chance than someone who let the system dominate them into breezing over the details.

So I am using my mutual’s prompt to see if I can outsource a very slow and adaptive return to fitness after my month off from exercise to recover from surgery. I like what I’m seeing from all models that I’ve tried it on but I imagine I’ll have all the same “me” problems with overdoing it and pushing too hard. But who knows, maybe this aspect of wellness is better handled by machine than by me.

Categories
Biohacking Chronic Disease

Day 564 and Not Exercising

Summer is supposed to be when you are outside and most active. But that’s not been true for me. I’m not entirely when I stopped working out this summer, but I suspect it was sometime this May when I got the flu. When I was in Montana I caught influenza A from my husband while we were buying our new homestead.

I was pretty under the weather for the entire month. I probably extended my suffering by being in a high stress situation for several week. I had to do things like attend a two hour property inspection while I was definitely still sick. And then a few days later I was stuck in a car for 8 hours straight back to Colorado. Thankfully my husband actually did the driving. Negotiating the emotions of buying our first house while sick wasn’t ideal either. That was arguably the most intensive part of the entire experience.

Going into May I was hiking and walking an hour a day along with several consistent months of a 3 day a week weight lifting split routine. My squats looked good and my tracker apps were pleased with my low level ambient activity. I was still struggling with fatigue but I felt like being active was surely the best way of improving my energy levels.

I’m not as convinced this is true anymore. There has been chatter for decades about post exertional malaise in various viral and autoimmune cases. It is regularly brought up now in long Covid as well. I’ve experienced some variant on and off for years whenever I have symptom flares. Even modest exertion like a short walk can lay me flat if I’m not feeling well.

As I had a lot of ups and downs in my symptoms in June in July I let even modest exercise efforts go entirely. Between traveling to hot climates like Texas and the Mediterranean I wasn’t exactly eager to be outside either. Heat is my nemesis. I’m probably one of the few people who can go spend time seaside and struggle to be outside unless I’m literally in the water. There is a reason I am so eager to move to Montana.

Looking at my various trackers and diaries the past three years I have seen aggressive declines in my physical activity levels over the summer. As heat domes and 100 degree days become the norm I just can’t tolerate a lot of time outside. The temperature barely dips below 80 even at nighttime. And if I try to be active in that kind of heat I see set backs in all my metrics.

I’ve got years of data at this point and it’s funny that I’m always at my fittest and most active in the dead of winter. Everyone else enjoys sweater weather and Christmas indulgence while I am lifting heavy, energetically watching my nutrition and reveling in the cold. Maybe you can take the Swede out of Scandinavia but you can’t take the Scandinavian out of the Swede.

Categories
Chronic Disease Chronicle

Day 115 and Physical Rehabilitation

As part of my commitment to quantified self and biohacking I have a physical rehabilitation protocol I cobbled together. Two years ago at the start of my autoimmune my journey I couldn’t walk easily. The ankylosing spondylitis manifested in my upper spine meaning I would struggle to get from my bed to the bathroom. I had to shower using a stool. I walked with a cane. This was not great for my cardiovascular health or my muscle tone. I was in this state for well over a year.

As the inflammation has become controlled in the past six months, I’ve been faced with a long rehabilitation. How do you build back stamina when even minor exertion was beyond one’s capabilities? As it turns out you do it one step at a time.

I’ve kept it simple. I get up out of bed every hour and take 250 steps. You’d be surprised how much a commitment to small consistent movements builds on itself. Once I got used to regular “get up” movements and pacing the room, I focused on adding small increments. Add in a hundred more steps at a time and now I’m comfortable hiking for an hour a day on flat or slight inclines. Thanks to a totally inconsistent stretching routines (a mix of Pilates and Alexander Technique) my muscles have retained mobility so that adding in more mileage has always felt comfortable.

I don’t have a program that is specific to rehabilitation though I suspect I should. I just committed to adding 5% a week more steps till I was able to walk 3 miles at a time or about 7,000 a day steps with a small amount of activity every hour. I suspect the regular activity each hour helps more than the steady state work but both add up to fitness gains. I have been adding in weight lifting and found that my strength is reasonably good. The real issue is that if I go to my full strength capacity I find myself struggling afterwards as healing and natural inflammatory processes are still a challenge for me. It’s as if the actual fitness isn’t the issue but rather my capacity for recovery.

Today I was able to successfully hike the NCAR trailhead in South Boulder. It’s a moderate intensity hike with some scramble and a gain of about 750 feet over a 3 mile circuit. What surprised me the most was that I didn’t have any perceptual issues with fitness. The exertion felt fine. The challenge was the occasional spike of pain. I wasn’t entirely sure if discomfort was a function of not being capable of managing the trail or simply that I’m still prone to system cascades. I can’t explain it any better than that. The trail was muddy and I lost my footing sending me into a fight or flight cycle that I needed to let pass.

Now that I’ve reached a point where normal activity is possible I need to find the next step in my cumulative rehabilitation program. The area where I can add 5% gains each week. If anyone has suggestions I’m open to it!