Category: Chronic Disease

Categories
Biohacking Chronic Disease Medical

Day 1768 and Maybe A Corner Is Being Turned or Maybe I Should Turn Back

I feel as if I lost almost all of October to combating a medical hard left turn from what was supposed to be a pretty simple procedure requiring no downtime and little healing.

I feel like I got quite a scare and yet you’d think I’d be used to it, as this is all downstream of the interleukin-17 inhibitor that I changed onto at the beginning of the year for my autoimmune condition.

Every single quarter, and in some cases every other month this year, I have had some bizarre skin infection resulting from otherwise pretty benign situations. An infected gland in my eye (twice!) an abscess that turned into a deep tissue infection, and a tiny incision that allowed in a subcutaneous infection all rocked my world.

As much as I am thrilled to see all of my inflammatory numbers rolling in to baseline normal, I just don’t know if I can sustain having a health crisis this frequently for a medication that is supposedly working. It’s working at an extremely high cost to my sanity and body.

And you might say, “Well, the numbers don’t lie.” And I’d agree. But there are many other factors I have to consider, not the least of which is that healthcare access in America is so bad that I have managed two of the four crisis points with medical tourism abroad.

I am going to give my IL-17 inhibitor a full year as dosing on and off biologics is no easy matter and the compounding effects are quite real. But I do very much wonder if in order to go forward I must turn back.

Categories
Biohacking Chronic Disease

Day 1764 and Not so Easy In and But Out of the Woods

It has been sixteen days since I confidently decided to insert testosterone pellets by tiny incision into my left buttocks. I was felt certain we’d checked all the appropriate risk factors and my tolerance threshold was met.

I felt I was making pretty decent progress on healing over five days as I had not only the benefits of HBOT but also read light therapy. I was pretty darn pleased and felt well.

And then it seemed I took a turn six days further on. Perhaps some trauma from the lidocaine and epinephrine induced enough of altered window of immunity that some bacterial weaseled its way in the wound and viola a subcutaneous infection called cellulitis.

I was put on two different antibiotics and we figured it would clear quickly. That was incorrect And it has been a slow healing process

Barely improving day by day. And I had somehow made the decision the night before the procedure that I would just waltz into a new beauty shopping blog as the holiday season warmed up. So that was perhaps bad luck on my part. And has slowed me down on something I was doing for some joy so I hope I didn’t let anyone down. I am muddling through.

Today I got an ultrasound on the wound after a fever spike and did a number of blood tests to see where my white blood cells and inflammatory markers were at.

The local hospital was having computer troubles which meant trouble scheduling an ultrasound but we managed to find another imagining clinic this morning.

Back at the hospital for bloods (they do walk ins for blood draws) they still appeared to be having issues with computers. “Your insurance isn’t recognized” was the verdict thirty minutes after using it at other lab. That made for a chuckle but we got it done.

The results are already in and we seem to be looking at healthy epithelial tissues and my CRP and Sed Rates were not elevated. Of course, half the reason I am worried is I take an immune suppressant for chronic autoimmune inflammatory condition.

It seems to manifest frequently as skin infections. My old drug wasn’t nearly as effective but it also didn’t have side effects. S

Hopefully slowly and with lots of protein and rest I’ll be healed and can spend my time on work and my pet beauty blog.

And tomorrow I’ll cross my 30th HBOT treatment mark so maybe it can make progress on building me up instead of dealing with a flesh wound. Which is actually just damned good luck on our part.

Categories
Biohacking Chronic Disease

Day 1761 and Give Me A Break

It has not been an easy year for me or my family. The struggle to find a path to a sustainable place of health feels harder than ever.

I am living in some type of thermodynamic hell. Everything I try comes with equally forceful reactions and I wish I could say more of them were positive.

Even when results look positive they have high costs that make me reconsider if I should have done it at all. Switching my immune suppression drug put my inflammatory markers in the best place we’ve seen them in years.

Alas it is so effective that I’ve had four major skin infections in 2025 of which four required going under the knife. And the fourth was caused by a small incision that was considered so safe and routine we almost didn’t consider antibiotics at all.

I just so badly want something to work in a way that doesn’t come with staggeringly high costs. Normally I’d link around to all the relevant posts but I just need a break so I’ll leave it as an exercise.

But can you imagine anything more depressing than having an infection on your ass? I sure can’t. I am stuck trying to keep pressure off of it while working on all the various projects of life and I am a slow healer.

I don’t even get to see if the HBOT is doing anything for my main concerns, as if it is we are only going to see it when I clear this crazy infection.

I suppose the good news is that one of the best treatments for high risk wound care is actually hyperbaric oxygen therapy so the positive and the negative are at least balanced.

Categories
Biohacking Chronic Disease

Day 1757 and Best I Can Do

I’m a bit hard up today as my recovery from my latest adventure in biohacking has had more twists and turns.

I am incredibly prone to subcutaneous and deep tissue infections from even modest and safe procedures. It seems this will simply be my reality permanently if I stay on the very effect anti-inflammatory medication.

I keep hoping I’ll adjust to the Bimzelx and the skin infections will be less of an issue but I’m on my 4th skin trouble of the year and I’ve only just reached what’s considered a full loaded dose.

I really don’t know what to do about it as it’s a major full year long process to change a biologic and adjust to the dosing so I may have to live with it. My inflammatory markers are the best they have ever been it’s just that I’m constantly getting some new skin issue.

So I’ve switched up the antibiotics to be extra careful on this healing but my brain is beyond fuzzed, I’m in pain, and I’m quite tired so I’ll just have to let today be what it is and pray the new antibiotic gets me to a better tomorrow.

Categories
Biohacking Chronic Disease

Day 1746 and Processed Pizza Hangover

Yesterday was my birthday and we celebrated it in grand style and semi- tradition by spending two hours walking every single aisle of Costco.

Now you might think all that walking around would leave your body feeling invigorated, and honestly it did, but we finished our grand tour by eating at the Costco food court. Now there are probably ways to eat healthy there but not how we did it.

We went for the classics including the dollar fifty hot dog and soda combination (a bulwark against inflation that has stood longer than seems possible) a slice of pepperoni pizza, a strawberry smoothie and a chocolate chip cookie. I had the pizza, some of the smoothie and half the cookie while Alex had the hotdog, a root beer, the rest of the smooth and a little bit of the cookie.

Our mutual and biohacker in chief Bryan Johnson gifted me a birthday roast of this meal. Which was not only hilariously funny but absolutely true.

Happy Birthday.

We didn’t feel immediately worse but we woke up today with what I’d qualify as a hangover. We can enjoy the above roasting as we generally don’t eat junk food and when we do it’s in more of the local beef category than the hyper processed and hyper preserved category.

Before you think this is a show of virtue, this preference never did anything for my aesthetics or metabolism, it’s just that it always makes me feel bad.

I am quite sensitive to preservatives and refuse to eat most forms of American bread and most varieties of prepared meal. No matter how good the ingredients are, the preservatives just do not agree with me.

It’s not that I’m a healthy eater naturally so much as hyper palatable foods are often hyper preserved foods and that sends my histamine response soaring into cytokine storms. So it’s no wonder I woke up feeling hungover.

I did real damage to myself as Bryan pointed out. We had a lovely time and I like to think the joy and happiness reduced our cortisol enough to bring us some balance. But it was easy to quit drinking for the same reason as it is easy to quit fast food. You feel like shit afterwards.

One of the most amusing fights I recall my parents having was my father taking my kindergarten class to tour a Carl’s Jr kitchen. They gave us a kid’s meal at the end, and while I turned up my nose at the burger, I did eat the french fried potatoes. My very crunchy and wise mother was not happy. “Now she will have a taste for French Fries!”

And damned if she wasn’t right. I still haven’t ever eaten a fast food hamburger. The idea of it is revolting to me and I’ve no clue how that came to be programmed in me. I may be one of the few people in America who has never eaten a Big Mac. But I love french fries. And good potatoes fried in a decent oil never leaves me feeling awful. But bread that doesn’t go moldy? That gives me a hangover every time.

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.

Categories
Chronic Disease Politics

Day 1730 and Steering The Titanic of Adult Habits When Icebergs Are Ahead

We are all us humans on the good ship Lollipop. I mean this as a stand in for Mother Gaia/Terra/Earth. We are all in this together right? Wrong? Who knows.

I happen to be on the America decks, so even if I can see the sea is perilous the orchestra is still playing. Maybe I’m rearranging the deck chairs. Is there anything that can be done to steer myself away from collision other than seeking a life raft?

It’s a kludgy metaphor but I am personally trying to move around several of my own ingrained adult habits with the hopes that I can change the direction of life for smoother sailing.

It’s hard to retrain your body after years of pain, compensating biomechanics and environmental factors beyond one’s control.

I’m putting on my life vest and trying to steer myself well so that I save myself and maybe in doing so save others.

If anyone has physical therapy videos they recommend I am working to retrain muscles that are compensating for my thoracic ankylosis. I also intend to go in person to physical therapy if possible.

And onto other topics less bleak than avoiding disasters, both personal and political, as you can indeed do more than you imagine to steer your own life here is some inspiration.

I enjoyed reading this piece on the rise of the online schizo and how to protect yourself as someone who is burdened with a strong case of apophenia. Worth a browse if you are concerned about your cognitive security online as no one wants to catch a Babylonian death cult meme virus.

Audrey Horne has a new substack called Secret Ballot where my friends and mutuals make some appearances and it includes a good calendar of social events in D.C if that’s your thing.

If you are following AI and eschatology (and really who isn’t these days) you may have heard about the Peter Thiel anti-christ lectures. I’d love to brag about being invited but I didn’t have the chance attend what with death and illness. However this two part interview with Thiel at the Hudson Institute covers the basics.

I spend a lot of time on artificial intelligence policy thanks to my advocacy on Montana’s right to compute law as well general interest in enabling more people to maintain the level of control and access they seem appropriate for their own lives. The right to repair movement is the seed for a wider right to compute movement.

On that note Alex is building automation into the sauna being built and has put the code up on GitHub if you are into that sort of thing. You have a right to build things and own them and no one is forcing you to buy convenience if you would prefer to keep your data on your own servers. Even if it’s the data for your air conditioning or your sauna.

We’re building a sauna and I don’t like anything at home connected to the cloud, so I’m building my own fully local controller
ESP32 as the brains, 60a 240v contactor for heater, even has RGBW LED controls
UI/ final control via Home Assistant and HomeKit

Categories
Biohacking Chronic Disease

Day 1728 and In Which I Jinxed Myself With Yogurt?

I must have jinxed myself yesterday by commenting on having signs of an upward physical trajectory. Whatever infection Alex has been battling for weeks hit me. Either that or my attempt to eat a yogurt to begin rebuilding my gut biome went very badly.

I woke up feeling decent but sore everywhere. Maybe it was delayed onset muscle soreness from the light yoga I did? I drank lemon water and meditated and got some sunlight. Still all calm on the western front. I had a coffee. I was feeling well enough that I thought let’s get in 20 grams of protein and go do some squats.

Within fifteen minutes my heart was racing, I was congested, and all the areas of my skin which had healed up so beautifully from HBOT sessions went from normal to itchy and red.

Had I accidentally introduced some intolerable form of lactobacillus or either supposedly friendly probiotic by eating a popular but high end brand of skyr? There is no way it’s the yogurt right?

It kept getting worse. I took my temperature. 99F. The actual fuck. My Whoop had noted my skin was warmer than average when I woke so maybe I should have seen this coming but natural fever seemed extreme.

Naturally I asked a friendly artificial intelligence to give me some input and apparently probiotic recolonization after extended antibiotics courses are not in fact regarded as a universally beneficial approach and can even be harmful. So I’ll let my my gut biome reboot without the introduction of any commercial probiotic packed processed yogurts.

Categories
Biohacking Chronic Disease Medical Preparedness

Day 1726 and Grief is for the Living

My husband and I are both sick. It’s the kind of “not quite respiratory, not quite sinus, not quite right” viral infection that always seems to take twice as long to clear as you expect.

Aging and stress is part of it but so is the damage we both have from covid-19 infections that turned into pneumonia. We’ve never been the same.

The good/bad news is that everyone we know seems to have the same basic set of physical degradations that we do. Varying levels of impact are met with varying levels of healthcare and wellness routines. From peptides to hyperbaric oxygen chamber therapy, no one is taking this shit sitting down.

I was already chronically ill before the world changed forever. It’s now common to have a flavor of autoimmune inflammatory chaos. I feel both less alone but much more frustrated at the crisis in American healthcare.

My medical billing codes as ankylosing spondylitis (arthritis in my spine) and psoriatic arthritis (psoriasis but it’s inside your body and it hurts!) but the tldr is constant pain, occasionally losing the capacity to walk, and the persistent exhaustion of chronic inflammation.

As we both cancel travel plans (for a charity event we’ve supported for years) and struggle to manage food and medication, I am reminded of the grief we are all carrying around.

As the world goes on with the “before times” as l memory for older generations, and the idea of any kind of positive “before” is unimaginable to the young, the grief comes and goes. The elders we stopped civilization to keep alive are dead or dying and our youth are distraught.

My own father passed just two weeks ago. I am grieving his loss, as well as how the loss is being handled by others. But my grief is mine and he is gone.

I am not the one who gets to choose how to memorialize him. Life goes on and we make precious few decisions about how and when it ends.

I remember being so angry and afraid for him when he left for cruise as lockdowns went into effect. I begged him to cancel the trip. I was afraid he would get sick or die.

He didn’t share those fears. He got stuck on the boat for an extra week or two, as no port would let them dock. He had the time of his life. I was locked in an apartment in Manhattan.

I don’t think he ever got Covid. For which I am grateful. I know far too many who did. I know many angry Zoomers grieving lost high school and college years.

Housing went up by 50% as we printed to survive the crisis. Strange times for us all and now we face the Great Ravine where the choices we made catch up to us.

My investment thesis of an increasingly chaotic world was novel when I first began and now it’s the same pitch every Tom, Dick and Harry espouses. What was once unclear is now the consensus. I am I am alive to see it and find no satisfaction in being right. The grief is all around us. Grief is for the living.

Categories
Biohacking Chronic Disease Medical

Day 1719 and Biometric Fall Lock In

I slept rather poorly last night. I get anxious before medical appointments. Interfacing with America’s medical system can range from merely uncomfortable to actively hostile so I suppose some heightened vigilance isn’t irrational.

I wanted to get a fresh set of bloodwork after a summer of fairly involved medical intervention. It ranged from deep tissue infection discovered during a minor surgery to multiple rounds of antibiotics. I have experienced a lot of side effects at full strength.

I am also beginning a 40-60 session hyperbaric chamber oxygen therapy protocol and I thought it wise to get the basic bloods for a before and after purpose.

I really yearn for an uptick in qualitative metrics I associate with higher quality of life like energy for my favorite physical activities (weightlifting and hiking). The fatigue and stress from the pain, and downstream side effects are constant reminders of poor health.

So I am looking for improvements in basic markers like my CRP and Sed Rate as those inflammatory markers should coincide with the qualitative improvements.