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Biohacking Chronic Disease Emotional Work

Day 1964 and We Are Who We Tell Ourselves To Be

No one likes a gloomy Gus. The downside of chronicling a chronic disease is the risk of seeing yourself as only the illness. Then other people will see you that way too. And so your identity becomes tied with only one of the many aspects of your life, and often the worst one at that.

Thankfully most humans are centered enough on themselves to forget the occasional gloomy reality from someone outside of their daily lives.

But repetition becomes reality, and eventually we are who we believe ourselves to be because others believe we are who we say we are too.

I came across a startup who is working on one of those classic swamp problems that seems like a great idea until you are well and truly stuck in the muck with bad incentives and no good solutions.

They want to use artificial intelligence to help patients with chronic diseases or complex medical cases to codify the many little details that might add up to the clues that crack the case.

By tracking subject inputs (unstructured data) and overlaying it with the other biometrics gathered by wearables and bloodwork they can help patients. I’ve seen hundreds of variants of this over the years.

Alas this new startup seems to have discovered a flywheel for marketing that relies on the problem I began today’s post with. We believe what we tell ourselves we are and eventually other people will believe what we believe.

They have chosen to market the app with illness influencers. Yes, that’s an actual category of influencer on TikTok and Instagram. Hot girls all have vague chronic illnesses these days haven’t you noticed?

And so a community forms and reinforces the identity that they all share. They are sick. And that makes them special. This gives life meaning. And did I mention lots of pretty girls have the most esoteric and exiting problems? Click to join now!

I find this to be a troubling, even borderline dangerous, approach to anchoring a community meant to help patients advocate better for care with their own personal health records. The incentive to remain with the privileged identity that makes them special only increases over time. Women reinforce themselves into intensely held identities all the time.

I thought about reaching out to them but I don’t want to get tangled with this problem. It is one for professionals which neither myself nor these founders are aside from everyone being a patient with chronic illness.

I do not wish for my identity to be the sick woman. The woman whose life was upended by a fertility protocol gone wrong in the early years of her marriage and in the prime of her life.

It’s one aspect of my reality. I do want others to be saved from my fate so I share it. But it is not who I am. Julie is not a sick woman. Julie is a complicated individual with a beautiful life and family and portfolio.

I had my own glimmer of hope today. Though I have repeated my troubles with my medical history I have never felt it was my identity. I’d happily give it up if I find a path to wellness. And I spend so much of my life trying to walk out of my troubles.

I have walked many side roads and pursued quixotic quests to find health. And some days I even find it. Today I got very good news on a fresh round of bloodwork. I’ve felt recently felt well thanks to some changes and an aggressive pursuit of new modalities.

I never want to get my hopes up too high as this effort has been a rollercoaster of ups and downs. But I won’t let go of the hope. The mere idea that this chapter could close and I might be a healthy woman is an identity I’d gladly welcome. And I’d wish that for anyone who takes on illness as a part of their identity.

Categories
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.

Categories
Chronic Disease Medical

Day 1814 and Spicy Boi Shots

I’ve been trying to coax myself into taking my final biological injection of the year for most of the day. It’s a very painful shot. The feeling of it is somewhere between stinging and hot sauce being pushed into your subcutaneous fat. It’s spicy

I switched my IL-17 inhibitor for my inflammatory conditions as one of my first actions of 2025.

I was filled with optimism that this new variant called Bimzelx might be the one that finally brought down my biomarkers. And it did indeed show promising results. My CRP and SED rates have never been better.

Alas, the cost is quite high. I’ve got no immune system response to speak of when it comes to my skin and soft tissues. I’ve had four major skin infections requiring surgical intervention and many minor skin infections.

I don’t think I can live with the side effects of the drug even if my inflammatory numbers are better. There is no doubt it’s effectively treating some aspects of my psoriatic arthritisaxial spondyloarthritisankylosing spondylitis.

My pain is better so long as I can avoid picking up an infection. I’ve been on antibiotics most of the year. Alas I’ve only had maybe 2-3 weeks without an infection brewing or being beaten into a retreat.

So today may be my last spicy shot. I’ve gone it a full year of adjustment. I don’t relish the prospect of adjusting back to my previous medication as it takes a full year to fully dose on and off these things. But maybe I’ll be lucky and on my final shot in the year I’ll see a change for the better

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 Media

Day 1766 and Thursday Styles Theory Strikes Again: Testosterone for Women Edition

One of my long standing theories, and a personal coinages, is the Thursday Styles Problem. It’s a theory of knowing directionally what is coming, but never being quite sure of when.

The New York Times publishes its “styles” section on Thursdays and Sundays. If you work in media, public relations or culture, you are aware of the general trends that will emerge on Thursday ahead of time. If you know “what everyone knows everyone knows” ahead of time, there is a lot of money to be made.

Predicting the trends sounds easy when I put it this way, but the timing of it requires quite a bit of foresight, and considerable planning.

The trend piece is researched and reported over months. It requires the editor to be familiar enough with the trend to approve the writer taking time & resources. That means other upstream media has to have covered the topic in the niche which requires its own planning and coverage.

And while hype cycles have shortened, culture still takes time. And really important cultural trends may even require years to be relevant enough to be Thursday Styles worthy.

And can you afford to wait for the cycle to run? Breaking news happens and a piece gets pushed. A hotter trend might push the piece for weeks or months. If your business can’t survive the long game of becoming a Thursday Styles trend, being first hardly matters. Being right doesn’t matter as much as being right on time.

There is an art to this. Publicists play long games. They seed articles with a long arc in mind. Prediction markets place bets on the likelihood of something occurring, but with many actors you can’t really control when and how a thing happens.

It’s hard enough that Alex Danco believes it to be its own cultural movement and a force akin to past movements like modernism. Predicting the future is now an active part of living in the present for everyone.

So naturally when something I am doing happens within a month or so of me doing a thing, I tend to feel smug. When Albania was on the front page of the styles section while Alex and I were vacationing there, I gloated. I’d been hip to the forgotten European country for years.

Today I got a push notification about women taking testosterone. It had the full ugly animations of a thirty minute reporting on a full blown phenomenon.

Frustratingly it is very light on specifics as to what constitutes a “high dose”, while framing the piece almost entirely around the wonders women experience from taking a higher dose of testosterone than what might be considered average. 5mg a day is roughly average, and the procedure I did lasts 4-6 months, so I am starting at an average dose after having been on a 3mg a day cream without getting an improvement in my bloodwork.

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 75-100). Day 1754

I have been very open about my dosing, my own bloodwork, and what went into why I chose to do it. Which, I’m glad, as the New York Times sure isn’t telling. Being very honest and open about details seems important as I have the privilege to experiment and I want others to benefit from that.

Because of minor complications, I’ve been attempting to be entirely transparent with those as well. The treatment itself is not dangerous and is tolerated very well, but I have had unusually high incidences of skin infections due to the IL-17 inhibitor I take for my chronic inflammatory condition, which led to a longer recovery than I’d have preferred.

Now that this is a full blown trend I promise to report back as I heal and as my blood work begins to show results. Until then, if you want to know what other trends I think will hit big and want to get ahead of the pack, remember I am just a message away. And I keep a shopping blog as well so you can buy what I buy before it shows up with a rave in the New York Times.

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.