Tag: Medical

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Biohacking Chronic Disease

Day 2020 and Summertime Sadness Sick Season

I am feeling better today after a what felt like a long week of crashing out from a busy quarter of work, travel and side quests. As I was looking at my archives, it seems like mid July has traditionally been a time for medical crisis.

Last year it went from surgeries in foreign countries to two years ago hacking a long covid Nicotine experiment, but even further back I have struggled with energy and vitality and viral infections in these months. It shows up in my data year after years and the tags like up.

Maybe these heat death statistic needs to include the general quality of life dip that comes with a hotter climate. If we once went inward in to our psyche in winters and enjoyed summers of slightly crazy hot joy that life is passed.

Maybe the long now of the perma-weird has cast a shadow of stuck culture which that I see more clearly when life becomes unlivable outside. If you keep living out in the world things do move forward. It’s less pleasant to touch grass when it’s dead and a fire hazard. And so the summer slows us down enough to see inside ourselves

I spend more time inside in the summer than I do in the winter. And given that my home is in Montana, you’d probably expect it to be reversed. Thankfully we only have two months where the weather gets into the “indoors between 9am to 9pm” heat risk. Other lower latitudes have more troubles than we do and blessedly our power comes from our own solar grid so I never worry about running air conditioning.

Categories
Biohacking Chronic Disease

Day 2018 and Getting in Writing Reps In My Pressure Tube

I am a wreck. But now that everyone is discovering the value of daily writing (get in the repetition before the AI harms your skill), I have to gut it out as usual when I’ve got little in the way of cogent thought.

In an attempt to recover, I’m in a hyperbaric chamber sucking back oxygen under two atmospheres of pressure and I still can’t get my heart to stop pounding. Damned drugs.

It’s 100 degrees outside which probably doesn’t, help but even with oxygen, an eye mask, a soothing Endel NSDR session delivered by Bose noise canceling headphones, I could not get my heart rate under 100 consistently.

I wish I had a better theory than having over extended myself by traveling from mountain to swamp and desert to sea and then back again. Work and family call me, and they are not ever in the same place. It’s been a season of enormous wins but the price is being paid now.

It would seem that I’ve found my way to my first full system cascade failure since I went off my IL-17 inhibitor and onto a peptide regime with hormonal support.

I’ve had four glorious months of being able to act like I’m a reasonably healthy woman. Then I returned from a Fourth of July celebration in Utah to Montana and immediately fell apart.

My physician suggested the dreaded prednisone as well as a cycle of doxycycline. Goody goody gum drops. Both notably raise resting heart rates.

Want to see how bad? Get a look at this chart of horror and pharmaceutical malice. I woke up around my usual time and my heart has been pounding all night (no wonder prednisone makes people go nuts), my HRV registered as an 8 (average at my age should be 40-50) and this only registered as kinda in the green because I’ve had a week of it being in the mid teens. So yeah what the actual fuck. What do I even have?

The worst Whoop recording I’ve ever had

Maybe I just need to quietly let the steroids tamp down any inflammation and let the antibiotics kill off any bacteria that have decided to colonize me but I won’t lie I am terrified that those good months were a fleeting moment and this is my new normal.

Thankfully I know in my rational mind I’m in my luteal phase of hormonal horrors and I’ll get bloodwork as soon as my menstrual cycle lets me bleed.

It’s likely I’ll be in need of some new hormonal pellets sliced into my ass and any infection or inflammation is just a function of having gone a bit too hard and too fast in my glee that I can feel good again.

Categories
Aesthetics Reading

Day 2016 and Cracks in Timelines and Stratum Corneum

I write every post on my blog with my own mind and my own hands. I type on my phone whatever my mind has managed to organize on a given day. It’s a ritual for thinking more than an attempt at being read by others.

Funnily enough, on Day 804 aka March 15 2023 (the day I first met Isaiah) I wrote about how AI writing seemed primed to over take all natural human brain brewed artisanal content.

Three years later Isaiah’s reactor went critical, I’m still writing my human brain derived content, and timelines from Twitter to Substack are drowning in pithy highly readable artificial intelligence written content. Poor Will Manidis has jokingly taken responsibility but feed slop was coming one way or mother.

It does make a chronological feed as a timeline a much better choice for personal use as algorithmic buffing of content will make a night river of a platform into a million tributary parts. The feeds crack as the water of thought are routed elsewhere.

This metaphor has clearly reached me as yesterday I went to some effort to do a full shower, exfoliate, shave and wash routine with new products meant to improve my epidermis from tip to toe. I ended up giving myself a number of itchy red notches and spent the evening slathering on lotions and cortisone creams.

My stratum corneum cracked just as my timeline did. The moisture in my skin is we sucked out by acids and scrubbing. I’d taken off a few dead skin cells and irritated the rest.

Just like the insights and prose have been buffed and pumiced to a flat surface of legibility in our feeds. Nothing was buoyant or smooth. It was flat with the occasional warm to the touch but of discomfort. Slopping on occlusives might help my skin but I have no fix for the timeline.

Categories
Biohacking Culture Travel

Day 2003 and Till the Sweat Drips Down Europe’s Nuts

Few topics of cultural exchange are more more humorous (and occasionally anger inducing) to me as an American with a disability than European heat waves. And Europe is in its worst heat wave apparently ever at the moment.

The persistent resistance of the French, Germans and British to installing air conditioning and updating their cities to manage climate change seems to wobble between old health superstitions and smug moral superiority. Eastern Europe and Southern Europe do not suffer from this issue.

The WSJ editorial board shared this information from France’s ecological transition agency. They are slowly being convinced that the death tolls and hospitalizations that heat waves produce may need mitigation.

The French ecological transition agency said in May guidance that AC may be necessary for the elderly, chronically ill or pregnant. But if you really can’t live without it, use it in only one room of your home, and don’t set the temperature below 79 degrees Fahrenheit. That’s because AC uses too much energy and contributes to climate change.

I prefer to sleep at 20C or 68F. This partially because my sleep & biometric tracking apps as well as my physician recommend a cold dark room to achieve the sleep required to keep my health stable. The 26C recommended by the French for us chronically ill types? It is 79 degrees Fahrenheit.

Yeahhhhh almost ten degrees warmer than my doctor recommends. No thanks you. Even at 72F if I’m down to my socks (always sleep with socks no really) and my underwear I’ll still find myself thrashing under just a top sheet. I once had my neighbors attempt to call the police on me for running air conditioning during a notorious heat wave in 2023 in Frankfurt. It was a noise complaint. Sure.

On my most recent European trip, I brought paper fans. Not electronic (though I did bring two of them as well) but the sort you languidly wave yourself with in an attempt to look cool when in a desultory mood. Which never seems to lift in this heat. It actually does look rather chic and the movement of the air helps.

I brought the pharmaceutical storage grade ice sheets used for shipping injections that have granulated particles that bond with ice to keep them cold longer.

I strap the ice inside a travel vest with dozens of pockets or wrap them around pressure points on my feet, ankles, wrist and neck with scarves when I’m particularly overheated. I’ve seen people do this with socks filled with rice and water kept in the freezer as well.

I have those goofy towels that absorb extra water and keep it cooler that I wear around my neck and head to go under the several wide brim hats I travel with. I always swear SPF 50. A sunburn is a nasty way to bring on heatstroke. I also bring my own ice trays to freeze ice cubes for both drinks & a bowl over which my hand fan blows for faux AC. I’ve dampened cotton sheets over open windows at night with a fan in to create evaporative cooling. It’s not AC but it helps. That’s why I carry two charger fans.

I will also chill wet wipes and my cosmetics. I carry small misting sprays with me everywhere (I like the classic Mario Badescu Rose). I have even mixed mint essential oil into my travel-size aloe antiseptic gel. My soup is peppermint as well to give that feeling of cool. And I always carry few rehydration sachets of electrolytes.

I’ve made friends with these techniques pretty regularly. Hydrating salts and a water bottle refill is a good conversation starter. Because as much as the French fear drafts for their health with artificial cold the Germans seem to think it’s a necessary part of life to suffer the heat (as if we don’t have enough heat in hell) everyone is suffering and needs help to get through this kind of extreme heat.

The only person who makes sweat dripping down his balls sound appealing is Lil’Jon in Get Low. And even he said at the Democratic National Convention that it’s time to get low..er temperatures. So to Europe I say get cool or you can have deez nutz. Let’s all get lower temperatures together.

Categories
Biohacking Politics

Day 1990 and Exhausting Exertions in Life and The AI Wars

I am so very tired. I haven’t felt the sort of down trodden fatigue that hit me today in a little over two months. That’s a long stretch of functionality for me. I am grateful for it and pray I am better once I’m rested. Or once my period hits I’m likely to feel better as my luteal phase is a real bitch. PMS needs a cure.

I am crediting my long stretch of functionality and energy (which I immediately put to use working longer hours and traveling) to the introduction of a peptide stack that replaced my IL-17 inhibitor. I’ve run the gamut through the IL inhibitors along with a myriad of other biologics.

Ironically the peptide I’m crediting with my improvements doesn’t even work on the IL-17 pathway. How’s that for kicks? My bloodwork has never looked so good and I’ve never had so few side effects.

I was suppressing a pathway that was very specific when there were cheaper short chain options I could have worked with further up the anti-inflammatory pathways and potentially closer to the source. I am my own science experiment.

I admit to being a bit vague here for fear that the days of open discourse on biohacking may be over and insurance, pharmaceutical companies and the government regulatory bodies will all look askance at efforts to heal oneself under the auspices of consumer safety. What they mean is they won’t profit so handsomely even if we achieve better results.

I had been running a piece of deep research on the latest and greatest large language model to collect what precious little data we have on my peptide stack when I hit my daily usage limits. The free tokens were hooking addicts.

Oh well I thought, it will run when my daily allotment resets. Then the model was slammed by restrictions in Europe. And then the model was shutdown for users entirely. There goes my query!?!

The model wars are here, and it’s ugly for anyone who might want to research biomedical science. Or anything the owners of the models deem to be sufficiently unsafe for you the idiot user. And you wonder why I was so keen on Montana’s right to compute law.

Anyone who has worked in technology long enough to see Uncle Sam have a fight with a corporate “Trust and Safety” team can tell you how this fight goes. Bitter, protracted and it can cost a small fortune to survive if you are a startup.

It’s not entirely clear how this fight will end. But I can’t say I’m very happy about how it’s going. And I’m so very tired of the fight. It’s been ongoing my entire life and I see no signs of it stopping. This is just an other chapter in the future and its enemies.

Categories
Biohacking

Day 1985 and Am I In An Abusive Relationship With My Whoop?

A flurry of new offerings in the health tracker market alongside my surprisingly dramatic improvements in my own health over the last two months after going off my IL-17 inhibitor and onto a peptide stack has me considering a major life change: ditching my five year long relationship with my Whoop. I’m not entirely sure it’s healthy for me anymore.

I wear an Apple Watch but I have for five years now trusted my Whoop with my biometrics as their data display was significantly better and I trusted their data resolution as they took many more samples.

Whoop’s emphasis on HRV (heart rate variability) in particular won me over in the early days. I care more about my recovery than my exertion. I was simply too ill to ever train that hard. Nevertheless I wear both. I’m not alone in wearing multiple devices.

Fun fact: About 90% of smart-ring owners also own a smartwatch, according to research firm Circana – WSJ The Wearable Showdown

I tried an Oura ring early in the pandemic and found it to be too large to be manageable as I simply have very small hands. Their new claims to having made a 40% smaller band. This has me considering a switch if I’m able to port over my historic data and able to reconcile it with my historical inputs across personal vibe coded apps. Data portability is a huge plus in personal data products.

My fear is really don’t believe Oura Ring management team has a feel for women’s health. It has stopped me from considering them after I returned my first ring due to its comically large size.

But they are trying even if they are so damned awkward. The ceo brought up in an interview that “other cardio” to quote the XKCD comic is logged as wrestling or horseback riding. Gee. Thanks for that image guys. But I am a data obsessive and Whoop is driving me crazy.

Oura Ring in the WSJ

You see I am someone who is obsessive about my biometrics as a double device users and I worry it’s driving me crazy. Recently Apple changed its resting heart rate data to lowest daily average while Whoop has stuck with evening sleep average.

I have easily a 35BPM difference in resting heart rate between the two. And Whoop rags on me constantly about my high RHR at night. I got an EKG I was so concerned about it. Turns out that was totally unnecessary.

We may be correlating high resting heart rate at night with adverse affects when in reality it’s much more about your cardiovascular fitness. When I’m in pain at night and repairing of course I have a heart rate that is higher than ideal. But when I’m managing it during the day I do get much lower results.

And I have no idea how much to worry about this as I have a low HRV but fine to average V02 max. I do low impact work daily, maintain mobility and slowly work my lean muscle mass so how much do I need to panic based on my Whoop? It’s genuinely hard to tell.

The largest ongoing debate is whether RHR is a true causal factor or primarily a surrogate for cardiorespiratory fitness (CRF). Studies show that unfit individuals with high RHR have the greatest mortality risk, while unfit individuals with low RHR (pharmacologically induced) don’t gain the same benefit as fit individuals with low RHR. This suggests CRF may be the deeper driver, with RHR as its most easily measurable surface signal — meaning wearable-tracked trends in RHR over time may be as or more valuable than a single snapshot reading. – AI synopsis on RHR and cardiovascular fitness.

At this point I find it is hard to understand how much I should worry about how Apple measures its resting heart rate versus Whoop versus the nagging stress of never being good enough when I am simply doing my best to improve slowly with sensible measures like lean mass, lower fat mass, regularly enjoying cardiovascular exertion, sleeping well and eating as well as anyone can be expected to in the American food system.

If anyone has any opinions on the topic I am open to suggestions as I worry more than I’d like based on my Whoop whereas my Apple Watch makes me think I could be doing a lot worse. Meanwhile Whoop makes me so freaked out I’m considering beta blockers and pushing myself to exertion that takes days to recover from. If Oura Ring might be a step up is it time to break up with Whoop?

Categories
Medical Travel

Day 1981 and Unpacking Your Stuff

I write about packing so much on this daily blog that you’d think I’d have an equally large collection of posts on the art of unpacking. I enjoy unpacking emotions, family systems work, a complicated social graph so why not my travel bags?

The forethought and execution required for a well packed travel bag in summer high season is a tactical exercise I both love and loath. My husband and I compete on who can most effectively compress down different categories of items from first aid kits to travel cosmetics.

I am however in my mind not a particularly fastidious unpacker. Or maybe I am? I repack my bags on the return leg as closely as possible to resemble the outbound packing trip. There are labeled bags for under garments, separates, and dresses.

I’ll transition some garments into a bag that is designated laundry, but I’ll almost always take laundry detergent with me. So it’s not unusual for me to make a return trip with clean clothing. When one travels as much as I do it can help to treat as much of road life as you would your regular life.

I unpack immediately upon arrival at my destination whether that is home or away. I prefer to get things out and tucked into the proper drawers and line ups. This applies doubly when I return home. I once had a suitcase sit unpacked for two weeks after a particularly bad flare. It was a nightmare.

So today I had unpacking work that required a bit of disassembling of multiple types of trip packs from gala makeup and silk gown to Greek island hopping swimsuits and even Utah desert nuclear facility visiting garments. It’s been a pretty busy couple of weeks.

I feel almost like I’ve found the bits and bobs of items that were misplaced inside tiny pockets or stowed away in unseen baggies. I am still searching for a few things but unpacking why the unpacking took so long is for another day.

Categories
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 1956 and Mother’s Day Message on Fertility

One of my mutuals Riva Tez wrote an exceptional read on her research into the American approach to fertility, and in particular, the maximalist hormone dosing that goes into programs like egg freezing, embryo freezing, and in vitro fertilization

It’s a topic on which I have written extensively, as I am one of the women who was hurt by the American approach of high hormone intensity to extract eggs efficiently. To make a long story short, it kicked off an autoimmune process in me that we’ve never fully gotten under control.

I think a lot about what the fertility industry did unknowingly to me and how it forever changed the course of my life. I went from thinking I had an insurance policy to being too ill to work within the space of a year. There is no recovery for me as of yet, even though I spend quite a bit of time and effort on my health.

If you were a millennial or Zoomer thinking about these procedures, I’d like you to consider reading her research and my personal experiences and educating yourself so you can make the most informed decision in your family planning.

Becoming a mother may have been an easy or unexpected decision for other generations of women, but we live in a very different time with very different technologies and different social constructs.

The more you know about your options, the more likely it is that you will find the right path for yourself without doing harm to your body in the process.