Tag: Healing

Categories
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
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?

Categories
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
Aesthetics Travel

Day 1976 and Ionian Island Ferries

Trains, planes and automobiles are nice but it’s not really summer till you have been on a boat. That’s right, I’m on a motherfucking boat. Well, I’m on ferry so the favored class of boat of certain Saturday Night Live cast mates.

I’m headed to a Greek island to relax with some friends. One of us came partially by train, one by ferry and car, and one by puddle jumper plane.

We’ve run the gamut of transportation across Europe to make it to a favored island known for its views, its caves, and of course its clear Ionian blue.

It’s been an adventure organized somewhat last minute as various itineraries made it clear we’d be within a few hundred miles of each other. So an Airbnb villa was procured at the last minute and the race was on to find our way to the island.

Grecian blue decks out the back/front of one of the many ferries leaving Port of Igoumenitsa

Igoumenitsa is the chief port of Thesprotia and Epirus, and one of the largest passenger ports of Greece, connecting northwestern Mainland Greece with the Ionian Islands and Italy via Wikipedia

I’m looking forward to a few leisurely days on the water, hopefully involving a few more boats but of the more manageable island hopping varietals. One can’t exactly jump off of a ferry into clear blue waters.

The chaos of loading a ferry fully of cars, mopeds, and tourist buses is an amusing sight. I’m not quite sure how the Greeks manage such an intensely maritime environment but it’s certainly a fun way to travel.

Small barking dogs, screaming children, sullen tweens, and irritated elders all being screamed at by deck hands is quite a way to start a relaxing time.

Categories
Aesthetics Biohacking

Day 1975 and Pool Blues

Having decided to take a proper break I am going all in on making sure my body and mind get the proper signs and signifiers to just let go.

My first activity after a long mess of travel was to sleep for an impossibly long term. Whoop approvingly noted that my 11 hours and fifteen minutes was the longest I’d slept all month.

Low stress, a green recovery and plenty of hours of deep and REM sleep

I know they say you should stick to a regular sleep schedule. I generally have a firm bedtime just past 9:30pm and will sleep nine hours if I can.

But between conferences with evening events, long drives late into the night and an eight hour time difference I was carrying a sleep deficit that needed to be remedied.

My next order of business was equally taxing. I booked a spa appointment for a pedicure and a waxing. Fresh toes and a clean bikini line seemed like just the trick before laying out on a pool lounger or on a beach.

Not that anyone will be taking too close a look at me but I like feeling as if I’ve cared for the little details. Cosmetics and beauty are more of a way of appreciating my own body than adhere to someone else’s preferences.

I usually wear a very basic nude shade on my toes. I almost never do my hands but I appreciate a but I felt like I needed something more Ionian in quality or perhaps one of David Hockney’s pools.

A bit of pool blue lacquer

Normally I wouldn’t go quite so exotic on a pedicure as I’m much more basic in my preferences but if I have a chance to stare out at wine dark sea over an aquamarine pool I may as well make the most of the experience.

Blue on blue on blue as an example
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
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.