Tag: Medicine

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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
Culture Medical

Day 1962 and Piss in a Can

Women are at a bit of a disadvantage to men when it comes to relieving ourselves. Yes I am talking about taking a piss.

From road trips to the backcountry, we’re forced to hike up our skirts (or worse shimmy down our pants) and aim our stream through squat & thrust such that it lands where we desire without soiling our garments or surrounding areas.

You might be wondering why I’ve got such a urological topic on my mind. And I might remind you it is not as if my writing lacks for lewd colloquialisms. Some readers may recall my viral hit “dick riding” so if you are inclined towards Freud we can have a chuckle about penis envy. And today it might even be true.

I am at the moment stuck in a literal can. I am nearing the end of a session of hyperbaric chamber oxygen therapy. To be specific, my 27th session on my second round of the therapy. My first round of it was forty sessions last fall. I am rounding the end of my second set in the next two weeks.

I happen to feel dare I say good this most recent round of HBOT. It’s a marvel what it can do for the lungs and for healing wounds. However I can’t credit my current upswing just to the oxygen I’m breathing in while under two atmospheres of pressure.

I have gone off my biological injection Bimzelx after a frightful year of infections despite its excellent ability to squash down inflammatory biometrics like CRP and sed rate. I’ve added in hormone therapy via testosterone and estradiol pellets (also my second round of them). The big change is that I am heading into my forth week of injecting experimental peptides.

Those had a hell of an adjustment, but seem to have done absolutely everything which was claimed by their champions in terms of anti-inflammatory benefits. Alas I am not sure if I should discuss them too much lest I get in trouble for being ahead of the insurance rackets. My doctor supervised and approved of them which should be good enough but one never knows.

That was a long way of saying that this combination of discontinuing old expensive therapies and adding in new cheaper less expensive treatments is adding up to a lot more mobility and capacity for me.

So today I went hiking and I lifted weights. Actual under the bar squats in my own rack like an actual human. The kind of active life that I’ve been desperately trying to regain for years.

So I’ve drank rather a lot of water today. More than perhaps I should have, as here I am in a pressurized can absolutely desperately wishing I could urinate.

Alas I am waiting the timer praying for decompression to arrive so I can relieve myself in a proper water closest. And thus we circle back to the penis envy.

It’s just that I have an empty can in here with me, it’s not out of the question I could find relief in that manner. Perhaps I’d have a better treatment. My heart rate is higher than I’d like and my bladder is unhappy about the pressure. But I’ve got no aim and little room for error.

Just imagine the smell. If urine smells in a well ventilated area like a roadside rest stop, just imagine how it might smell in a pressurized tube. It’s not a place you want to fart I’ll tell you that much. So wetting the blankets, upholstery, and my clothing in here would be a disaster. I’d never get the smell out.

So here I am laughing to myself about wanting to piss in a can. Maybe a good reminder to buy one of those hiking helper devices for women. You never know what kind of situation I may find myself in this summer if I can actually move my body comfortably again.

Categories
Biohacking Chronic Disease Medical

Day 1945 and Always Adjusting

I am adjusting, yet again, to a new set of daily protocols in my never-ending attempt to improve my health. I am experimenting with peptides but don’t tell anyone. I’ve also got a hormone experiment in its second round.

I am trying to get healthier, but that suggests it is even an achievable goal. It would be wonderful to get back to endless working hours or even just eight hours on my feet.

Every time I make a tweak to my routines and I see a change in my biometrics, it’s becomes eventually cause for concern. There’s no stable equilibrium to be found, and I know that’s part of life, but I’d like a stable equilibrium that’s a little bit better than one day at a time or ideally a couple weeks at a time.

Take my experiment with Bimzelx. Even when I achieve an outcome like getting my CRP rates into the normal bounds, it came at a cost that is simply too high to maintain. I had four separate incisions and surgeries last year from soft tissue infections.

What good is a drug that tamps down my immune system so much that I need to always go under the knife? It was like Goodhart’s Law came to haunt me personally.

I am going off the biologic (I am 12 weeks from my last injection) and already seeing change in the wrong direction. Not enormously bad but my immune system will pop if it’s not locked down.

Yet there’s very little I can do except keep going and hope that the balance will be more manageable, as I don’t know that I could have another year like 2025 again.

I set out trying to reboot my immune system last year, and it certainly seems like it worked. But can I keep the numbers in a place that are low enough to let me live, and ideally live with fewer medications?

I am constantly working against some new tweak or some new problem, and even little gentle experiments like a Pilates reformer workout or 10 minutes on the trampoline can turn into a full-day migraine if I am not immediately able to tamp it down. Thoracic pain will pop up crushing my breathing if I take a nice slow hike in the pastures beyond our house

Categories
Aesthetics Internet Culture

Day 1933 and JulieMaxxing

Everyone is maxing now. You can barely read a proper broadsheet without the Zoomer coinage crossing your transom. Maxxing is everywhere.

Maxxing means maximizing a certain aspect of one’s life. Comes from “minmaxxing”, a term for extracting the maximum output from the minimum input.

Urban Dictionary gives its history though the minmaxxing, though lately I’m not sure minimum input is actually part of the Maxxing game.

Maxxing is now maximizing every aspect of wherever you are focusing on improving. And boy do people want to improve across all possible vectors and all at once.

Is a geopolitical conflict all about Chinamaxxing? Is an influencer Looksmaxxing? Is a certain venture capitalist Retardmaxxing? It’s a little uncomfortable all around but time is short so why not go all gas no breaks.

I myself have noticed a kind of JulieMaxxing creep into my life I refuse to settle for a set of interconnected yet impossible to tease apart health issues.

From hyperbaric chamber oxygen therapy to everyone’s favorite semaglutide I intend to do it all. The same goes for face. I do an ABC+SPF routine just for starters for my skin. I am going to JulieMaxx if only so I can get back to Minimum Viable Julie.

Categories
Chronic Disease

Day 1928 and Migraine Uninterrupted

I have been hobbled by a migraine for most of the day. I wish I could pinpoint the triggers for it as right now I am lost as to what is causing both its intensity and unrelenting nature.

I’ve gone through all the basic remedies from putting your feet in hot water to total silence and darkness along with an alarming number of Imitrax. You can’t overdue them or it makes the cycle worse so I am at the gutting it out phase of this batch.

The migraine just didn’t seem to be breaking for more than a couple of hours and if I use those hours in any kind of active way I am setting myself up for a relapse. Yesterday we made a trip to Tractor Supply and then I spent my night in misery.

I was fighting a fever as my husband managed a stomach bug last week so it might be the aftermath of whatever happened there. I wish I had more to say that wasn’t a complaint about pain but it is hard to look at a screen for longer than a Tweet response.

Categories
Biohacking Emotional Work

Day 1920 and Walking The Dream Roads to Costco

Yesterday I was really struggling with pain. It was all I could do to scribble up an appreciation for my 18th anniversary using WordPress for my writing.

I am doing everything I can to biohack my way around a chronic autoimmune condition that interferes with my quality of life. My love for my life and work is strong.

Sometimes it is strong enough that I willingly try all kinds of therapies from oxygen to hormones. Now I am working through a hormonal treatment recovery (my 2nd attempt) as I believe it is working.

Of course, life happens constantly, which means juggling deep dark horrific pains while the business of war and the business of my own portfolio goes on.

I’ve not had good sleep this week between the excitement of huge wins and the terror of facing down another global crisis brought on my conflict.

You’d think I’d be used to it. Russian invaded Ukraine the week before I left to live in Frankfurt. I was living in Tallinn when 10/7 happened. I was also there when Estonian cables to Finland were cut. One of my best performing companies has had to work around three kinetic wars.

No wonder sleep can be elusive. Yesterday all dream roads carried me to horrors. I woke myself multiple times. You can literally see in my sleep tracking the spiking heart rate and my forced waking.

The positive side to this fitful pained sleep was being up early enough this morning to prepare for a Costco preparedness run and still arrived before their executive member hour was finished.

We rotated our basics like rice and beans. Tinned fish, chicken and other canned and stable shelf proteins are just part of preparing for a nightmare that we hope never comes. Preparedness is a civic obligation. Help yourself to take the strain off the system so we all make it.

It’s possible we are facing an industrial process cascade thanks to the war in Iran and I like us have supplies just in case. We can’t know what comes next but it’s good practice to check expiration dates and make sure you have everything from first aid kit supplies to soap. You’d be surprised at just how much processing fuel fuels the rest of the world’s production.

After all this, I was happy to get stumble into bed and take a long nap. I didn’t even wash the sunscreen off my face. I was running a deficit and wanted to have REM sleep where I wasn’t trapped in horror. Thankfully I got almost two hours of restorative sleep this afternoon and I am ready to go back to bed as soon as I can.

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
Biohacking

Day 1912 and Informing Ourselves

Some 20 years ago, before I knew I’d have medical troubles of any length, my college job was working for a medical ethicist who was a physician with a grant to study informed consent.

Now, years later, as I have worked my way through institutional resistance to how I may come to be disabled and generally dismissed as a patient, I come to find that much of the skepticism my mother had as a crunchy hippie is now functionally being proved a quarter century on. These uncomfortable trends drives skepticism in even the most informed minds. And most patients can only ever be expert on their symptoms.

This comes at the end of a crisis of communication about the value of public health and personal responsibility in a community. Many people did not feel that they were given adequate consent and no longer trust anything said by doctors. Would most medical professionals agree they had informed consent? I think most argue they were. I agree.

Now of course we’re all desperately trying to prevent harms here and patients more than ever feel that, as they don’t trust what’s coming to them because we’ve not effectively decoupled population-level information from the individual human behind a given case. Is that informed consent? Yeah as best we can do it.

Now how does research play into all this? I also happen to have the misfortune of having working on the early years of on one of the worst medical misinformation spreaders in all of healthcare. I say this lovingly: it is Gwyneth Paltrow.

Now if you root around Twitter, you will find commentary about how the supplements hawked on Goop and the supplements hawked on various right-wing sites are functionally identical. But she got a lot right because she is a rich well connected white woman with money. So again who is informed and to what degree?

Unfortunately some of the things that are sold as treatments or supplements they sell are real and have proven out. We’re working our way through the science on our gut biome, infection and its links to preventable autoimmune diseases, and any number of other previously heretical paths.

But we’ve really not transformed the way we process our information on what we know and what is actually considered best practices. The gap is very wide. Like a chasm. I am way outside the norms because I fucked myself up believing I wouldn’t be a statistic as it mostly worked for most women.

So I live with issues. But do I think that people have a right to experiment with what we think might be snake oil? Absolutely. Everyone calculates their own risk. Heck Sarno is just one giant placebo doctor on letting go.

We know that some of the avenues of exploration will prove to be placebo effect if they work. And we still somewhat trust things that are actually going to cause harm aren’t really making it into the popular press and mass consumption unless there’s some evidence. I sort of believe that to be true.

More people should feel that they have the right, if they have informed themselves over a period of time as patients, to work around the system if they make no progress despite best efforts and years of work.

There’s just a lot to balance on being informed about your conditions and your capacity to manage your own health that is up to you. I think that generally speaking the paternalistic attitude has not produced superior outcomes.

And the quality of care I get as someone who can pay for health care anywhere in the world, it is galling to me that the gap between what we know and how far we can go in practice is so wide.

So let the guy advertise the doggy cancer vaccine because at least it’s teaching people that we have solutions to more than they know. They can judge risk reward and be a little bit strange. Humans are humans.

You get to decide it based on your own understanding of your own life and you get what you get. I was disabled by my own misjudgment of informed consent on treatments recommended by a COO of a major company who paid to have as a perk to her workforce. Egg freezing was an approved elective procedure that everyone was on board with ten years ago.

I was informed. I consented. I got it wrong. Now let me see if I can fix it in my own manner of choosing. And I won’t trust mere authority next time. Neither celebrity nor pharmaceutical company is to be trusted.

Categories
Chronic Disease Medical Politics

Day 1895 and If Not Us Then Who?

Despite persistent efforts to mitigate the downsides of my various medications, as well as maintaining dedicated wholistic lifestyle routines for my chronic diseases, I am not making adequate progress. I’d go so far as to say today it feels like I am sliding backwards.

But that is partially a function of luteal phase acute migraines and not the full picture on the ground. Yes, it’s true multiple metrics have gotten significantly worse over the 15-month span of my IL-17 inhibitor experiment with Bimselx and I am preparing to make the decision on what to do next. Many biometric markers are much better but the trade-offs are severe. It just feels like I can’t overcome them right now because I feel awful.

Nevertheless it’s important to remain grounded in the here and now. I think part of my trouble may be I am adjusting both to a new time zone and my normal altitude. Maybe I’m overly concerned by data points that will get smoothed out over time but it feels very spik.

Alas there is little room in life for downtime or bad days. Portfolio companies are fundraising, politics is getting uglier by the second, and one key blocker in my life has remained unsolved now for years.

I’ve never experienced a blocker quite so persistent as the American State Department’s handling of visa and immigration work. And yes that includes being disabled and chronically ill. That’s how bad state capacity is right now. My years-long attempt to get visas for family members to come help has not seen an iota of success.

But we keep going. There is much to be done, both practically and at higher levels of abstraction, and I am being whipsawed by hormone migraines over the last 48 hours. It is not an ideal time for weakness in one’s body.

Yesterday the best I could do in terms of writing was some rambling about my irritation with new retail sales cadences at Sephora feeling down market. Not that I necessarily need this space to be filled with decent content but I know that I am not running at even 10% capacity.

We all have to contribute our talents to this moment in time and there are projects that I wish to commit more time and energy to, even though it feels like it may be the death of me. But if not me then who? It’s a question we should all be asking ourselves and I hope more of us rise to the challenge.

Categories
Biohacking Medical

Day 1890 and It Bears Repeating Or Does It?

I can’t say I have fully recovered from pushing myself to my operational limits to do work (which looks a lot like socializing in my line of work) while still recovering from an infection after dental work.

It’s always recovering from an infection these days. I’ve been on some kind of antibiotic or anti-fungal every day since October.

2025 for me was getting an infection and then recovering from an infection on repeat. Ever since I decided to swap my biological injection 15 months ago from Coesyntx to Bimzelx and I think I’ve hit my limit.

It’s just too damn depressing that it’s a constant threat that I’ll have either a soft tissue infection or an abscess or a swollen gland that turns into a staphylococcus colony.

It’s as if I’ve got no skin biome left which is almost certainly true. I think I’d rather have CRP and sed rates and risk other infections than be rotating antibiotic varietals like some kind of junky afraid to develop a dependency.

Except instead of pain pills or lady downers it’s amoxicillin versus doxycycline versus Cipro with the occasional dalliance with a macrolide. I’ve also come to appreciate the benefits of Fluconzole. It’s not great. If you want a quick AI generated overview scan along

  • Beta-lactams: This broad group includes penicillins (e.g., amoxicillin), cephalosporins (e.g., cephalexin), and carbapenems (e.g., meropenem). They work by inhibiting cell wall synthesis.
  • Macrolides: (e.g., azithromycin, erythromycin) These inhibit protein synthesis and are often used for respiratory infections.
  • Tetracyclines: (e.g., doxycycline) Used for a wide range of infections, they inhibit protein synthesis.
  • Fluoroquinolones: (e.g., ciprofloxacin, levofloxacin) Broad-spectrum antibiotics that inhibit DNA synthesis.

My problem is that going back to my old biologic will take three to four months to full dose and it’s not a risk free process. And my full biometric panel is better on Bimzelx so is it really so bad that my resting heart rate is in the upper nineties every other week?

I think it may be time for me to make a pilgrims to the remaining clinics and pretend that I have any remaining institutional trust. Maybe I can vibe code something usual along the way.

I intend to support others on this journey as I’ve been chronically this journey a long time and the times are changing as we bring more artificial intelligence to the inference issues around our biometrics.