Tag: Pain

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Chronic Disease Internet Culture Media

Day 2019 and Thot Police

I don’t have much in me today as I spent most of my energy on showering. What a depressing thought.

Showering is what’s considered a “vasodilating activity” and that can cause problems if you run it too hot. It can make dysautonomia (if you don’t know what that is how did you make it through Covid19) go wild and just generally makes me realize I’ve got some orthostatic issues happening during this flare.

Given that I’m having a fun high BPM couple of does, I got dizzy and that spirals into a migraine and then my whole system gears up and ooops I’m curled into a ball scrolling and texting.

It being 100 degrees in Montana today means that we’d need to run a water cooler not a water heater to get a comfortable lukeroom temperature. Our sauna is being in the shade of the barn is currently cooler than the outdoors. Just funny times but hey I’m doing my bit for the environment.

Despite the embarrassment of needing to sit down to scrub up, I thought I hoy through it with as little energy exertion as I could manage. And I still felt like shit.

So I figured why not compound it with more time on Twitter. It’s true that the website is for bored billionaires and the deranged and sometimes that’s a Venn diagram.

That’s really more of a loving joke as I enjoy the “hell site” even if it has positively allergic reactions to women posting pictures of themselves. Guess everyone is overheated amirite. Oooowoooogaah.

To be fair seeing a website for witticisms and breaking news become just another OnlyFans funnel stop is irritating. I pay up to the big man hoping it won’t get that bad. It’s got network effects for technologists and we have work to do.

And yet the platform most of us are marooned on is showing us it’s thot police time pretty much constantly from the media to the peanut gallery. If that poor founder who made a robot hand so good that Wired that immediately sexualized it, maybe the theory that we are in for a Puritan reactionary period is both correct and a bit overdue.

Too much signaling of sexual availability and hitting a paywall is just a funny way for that to happen. Like objectively access was always paywalled by culture and contracts. But I can see being indignant about it pervading all social spaces.

Heck if the robotic use is half as good as Wired made his work sound maybe we can solve more pressing problems like having a robot scrub down our Boomers & chronically ill so cleaning up doesn’t kill us? It can probably hold a loofah without anything going wrong right? And nobody use it for anything too nasty if it can’t consent. Don’t prove Wired right. May Lady G rest in power.

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
Culture Travel

Day 2004 and Heatwave Scandals

I’m in the middle of a miserable heatwave that is cooking Europe. You probably know it’s a heatwave over on the continent even in America as anytime Europe has a heatwave, the internet starts debating whether Europe has a degrowth mindset or if all this bitching is just Americans misunderstanding European culture & using anecdotal evidence. Even Europeans get upset at how this makes them look.

I’ve been hiding out from the heatwave in a hotel room. I am one of the lucky ones. Europe is as diverse as America so it’s a little silly to discuss it as a whole but only 20% of Europe’s housing has air conditioning. Germany is at 3%. The United Kingdom is at 5%. Honestly the mind reels as in America 90% of our housing has air conditioning even if we can’t all afford to run it.

It’s not just the housing either. A hotel room with strong air conditioning is a rarity in Western Europe. They will claim they have air conditioning at corporate chains and in Airbnbs, but it is not always the air conditioning you’d expect in America where you have more control.

In Europe you have a few options generally. A corporate hotel will be controlled by a central HVAC system. They may pretend that you can change it but in Germany they won’t let you go below 72 degrees at a Marriott. Ask a United Airlines pilot in Frankfurt what block of hotels they stay at to get a decent night sleep. It’s a nightmare and hacks are numerous but usually fruitless.

Your other options are finding independent hotels or Airbnbs with a mini-split. But good luck with that. The Germans and the French will tell you off for running it. There are towns where you need to show a medical need. I once had this happen to me.

So yes it’s usual that I’m in a comfortable hotel with a central HVAC system with individual room controls (not a mini-split) that allows me to get it down to 18C. That’s pretty unusual.

Why am I so lucky as to have air conditioning in a European hotel room that is central air and not a mini-split? Well I picked the hotel that the diplomats stay at in the capital. They don’t suffer at all.

The private small independent hotel I am at has NGOs staffers constantly winding people in and out of. It is a well maintained beauty of an independent hotel in an era of corporate standards. So it has a wiff of the old patrician smell to it and they enjoy their perks.

There are zoomers outside protesting corruption but inside technocrats and policy analysts and other bureaucrats enjoy cool temperatures at their control as they go about their work being high minded about democracy and equity.

Alas that isn’t a perk that everyone even working for the European Commission enjoys. While Ursula Von Der Leyen isn’t in control of much, she exerts influence and power over culture and expectations in Europe she doesn’t suffer herself.

During the current record-breaking European heatwave, the European Commission’s Berlaymont headquarters in Brussels experienced an AC system failure — or forced shutdown — on Friday, June 27.

Staff on floors 1–7 received an urgent text message at midday reading: “BERL — URGENT — Due to extreme weather conditions, forced shut down of air cooling system from floor 1 to 7 for the rest of the day” The Express

I’m glad my hotel was allowed keep its cool since her lower tier staffers don’t have that luxury. I understand why it’s a scandal. French and German cultural leaders can discuss their hospitals and schools without air conditioning with as much pride as they like. I am not buying it. Europe can fix this problem if it likes.

Categories
Startups Travel

Day 2001 and My Odyssey Continues

A vast somewhat intimidating vista is stretching ahead of me between two thousand days of writing every day and the possibility of reaching three thousand days of writing every day. One day and one post at a time right?

So like any sane woman setting out on a long journey, I ate a salad, had some protein and checked myself into a spa for a massage. No reason to start a long journey exhausted right? I need to pace myself.

I got a pedicure to immediately turn restoration to grooming necessities, but one can’t keep pool blue toenails all summer. Not every day is spent on the Ionian. Some days are spent at nuclear facilities in steel toed boots. Other days are spent in kitten heels inside conference rooms.

Just in case anyone does need to see my toes after those scenarios, I try to maintain a tidy nude set of nails. Isn’t it strange what expectations we have for women?

I may work remotely, at odd hours and in odd locations that allow the occasional eccentricity, but at any moment I might need to be on an airplane headed to parts unknown. You only get to be so weird when you have big goals.

In this case, next week I’m headed to a desert town and then a state capital. That’s state is becoming a more regular occurrence in my life. That’s a pretty big privilege for me.

Being a supporting player in a number of larger endeavors gives me the chance to add additional gravity if and when I might be useful. Even if it is just showing up as a cheerleader. I love trying to convince smarter, better capitalized and better connected players than me that indeed it is my startups are the winners in the grand game of macro-cycles.

I wrote that the world was getting to be a lot more chaotic when I first started this writing journey. Now that’s common knowledge. Then and now, I care about adaptability to this increasing complexity. This has turned out to mean compute, energy and decentralization.

The strength of your network is in the flexibility and foresight of its nodes. And I hope I remain a trusted node at the forefront of our long journey as a species for as long as I serve us well. I’ll carry on this Odyssey till then.

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?

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Aesthetics Biohacking Travel

Day 1979 and A Bathing Suit I Can Now Wear

My health must really be on the mend. Not so long ago (a thousand days or so) I could not tolerate wearing a bathing suit as the compression of the material hurt so badly.

Heat and sun only added insult to injury as my body struggled to manage inflammation. I had purchased a bathing suit I loved that became known as “the bathing suit I never wore” as I was simply packing it as an aspirational garment.

It was packed carefully in my suitcase trip after trip, in the hopes that I might have a good day without pain. Years went by and I never wore it. It was a sad joke. Not for aesthetics or vanity, but for the cruel pain that poor health puts you through.

If you go through the tags on the blog for ankylosing spondylitis you will see a journey of some length. The blog chronicles it from its starting years and, one day I hope, to its finish. I’ll may never be cured but I am finally living again.

The pale blue Ionian coastal waters protected from development and over traffic contain a beautiful array of fishes

I know it sounds silly that being able to wear a bathing suit without pain is a huge milestone, but I was unable to participate in the most basic outdoor activities with my own family.

A bathing suit was an aspirational garment not because I too afraid to be seen in it, but because the compression along my rib cage and spine hurt so badly.

And today I was on a boat for four straight hours including jumping off into the warm aquamarine waters of protected coastal Ionian water.

Nothing hurt at all. And I am not on any immune suppressant drugs at all at the moment. I am not on antibiotics. I am on a simple peptide regime. And now my swimsuit is being worn so often I need a second one so it can dry.

A halter top from Norma Kamali and a hat from a tourist shop.

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
Chronic Disease

Day 1954 and Constriction

I am in so much pain today. The tendon bands that wrap from my sternum around my thoracic to my spine is badly inflamed. It’s hard to breathe smoothly when your own tendons are choking you out.

I had a fairly intense week what with the chaotic back and forth in the national policy debate around artificial intelligence. There have been swirling rumors and much back and forth. Nothing feels worse than seeing your own industry shoot itself in the foot as the stakes get bigger.

Last night Alex and I went for a long walk in the long hours of sunset. It felt as if every living creature from the ducks in our pond to horses out to pasture was taking in the perfect spring evening.

We stopped and chatted with each neighbor as being outside was on everyone’s agenda with the clear sky and warm weather. The joy of greenery had the undercurrent of concern. A dry winter will have its consequences. One of our neighbors who keeps horses mentions their hay costs had doubled from last year.

The worry and activity is taking its toll today. O am paying for all this activity. My activity costs are just as high as alfalfa. From phone calls and activism to sunset rambles through the foothills the costs are mounting. I am hurting from the good and the bad.

Categories
Biohacking Chronic Disease

Day 1950 and No Sleep in the Long Hours

I seem to have accidentally fallen into polyphasic sleep. Those experimental not for human consumption, long amino acid chains that everyone is doing n of 1 research with?

Well, my n of 1 experiment seems to be yielding the occasionally odd sleep pattern. I’ll be up early after having a night of sleep that feels more nap than fully weighed sleep hours.

Think out by 9pm and awake before dawn. I feel fine, so I pack in the full day till around 3pm when lunch digestion & the general slumps have me saying “maybe a short nap.”

I’ll find myself popping back up at 6pm with an eye on dinner. Another accidental siesta has stolen the afternoon hours back from the long evening hours to which I’d applied them.

I won’t have any trouble going to sleep on time early. This pattern seems to be applied to days where I have a lot of physical strain.

If I get in a workout, a long shower, extra walking time, and other physically demanding tasks in alongside my mental work I end up needing the nap and still fall asleep on time.

Categories
Biohacking Chronic Disease

Day 1948 and Rotational Work

I’ve been struggling with migraines since I was diagnosed with an autoimmune condition maybe six or so years ago.

I seem to be particularly struggling with them the last two months, as I work through an experiment with hormonal balancing and tapering off biologic autoimmune inhibitors.

And so I am rotating various different activities every day in the hopes of avoiding triggering a migraine, while still getting in adequate movement and exercise, as well as treatments within the biomechanical profile that I have put together with my doctors and helpful AIs.

If I stuff too many experiments into a given day, I’ll almost surely end up with a migraine. Even if I only do one sometimes I get unlucky. Red light and infrared are, of course, a classic way to trigger a migraine, so I try to do those carefully and when my heart rate is stable and low.

Of course, sometimes you need to get your heart rate up, and there’s nothing you can do but get your exercise and hope it won’t trigger a migraine. Afterwards exertion when I have a need to get down my heart rate, I’ll try to mix that with my hyperbaric oxygen chamber therapy.

I’m in the middle of my second round of HBOT treatments and enjoying seeing things like my VO2 max improve. I’ll be tempted to do something like go for a longer walk to test my lungs and trigger some neck compensation, and then I’ll be right back where I started with a migraine.

I’m always rotating something in and around keeping my brain from feeling the pressure of my body’s adjustments. There is no stable equilibrium just the constant pressure to find a new balance.