Categories
Biohacking Chronic Disease

Day 919 and Thin Skin

I am experiencing very palpably the literal meaning of being “thin skinned” this week. All the areas where my skin is thinnest (eyes, lips, fingers, and other more delicate spots) are inflamed.

I’m beating back some kind of this autoimmune response to having some pets in the house with everything I’ve got, and have thus far kept it from cascading but only just. It’s taken a lot of pharmaceutical intervention. I’m high on anti-histamines, cranky from the itchy, and fearful it’s already turned into a systemic infection.

I’ve got some animal allergies that I’ve kept from being isolating and overwhelming by simply not keeping pets inside. I can usually tolerate some exposure if I’m very careful with hygiene. Please ask me about my psychotic indoor clothing routine. And yes it was developed with an allergist hospitalist when I was 15. I’m beyond embarrassed by it.

I suppose this approach might make more sense if you knew that I’ve had my immune system rebooted with drugs as diverse as cyclosporine (they use that for organ transplants) and chemotherapy injections (methotrexate the WWI superstar).

I take regular immuno-suppression for ankylosing spondylitis which is functionally psoriatic arthritis in my spine. I have inflammation inside my body & outside on my skin depending on the flares. And I’ve done everything I can for it from allergy shots to 4 separate daily antihistamines

I am more reactive to my environment than your typical take a Benadryl allergy type. If you’ve seen that video going around of the 300mg THC pizza joint and thought “what the fuck who has that kind of tolerance” well I’ve got that kinda tolerable but with allergy medication. I can toss back 100mg of Benadryl and remain conscious.

I’ve got no Darwinian explanation for how someone like me is an end point for evolution except that we must value the extremely sensitive for some less legible but nevertheless crucial pro-social function. Maybe we spot the danger sooner? I truly do not know.

But I am thin skinned. I’ve been trying to manage additional allergen exposure all week as we’ve had dogs in the house that I very much would like to be able to tolerate.

I really thought with proper medication and cleaning I could keep reactions to a minimum. I didn’t want to make it a thing. And it would seem the reward for being thin skinned is actually having to inconvenience people by telling them that my having thin skin has consequences.

It’s unlikely I can get my symptoms down without having a total reprieve but we’ve done what we can. We didn’t resort to steroids so it could have been worse. Though part of me wishes we had as some skin is beyond uncomfortable.

I feel both embarrassed and frustrated that no one noticed my discomfort till I had to say I can’t tolerate it any more.

It makes me feel like I don’t matter unless I come with a story of misery and pain. Having to speak up for needs with extremely firm uncrossable lines always feels like abandonment to me. I wish people would see the discomfort, misery and isolation isn’t a choice so much as a medical necessity. I do my best to manage it but it’s easier when it’s a shared priority.

Categories
Biohacking Community Emotional Work

Day 918 and My Attention Budget

I wrote about the realignment of attention budgets as social media experiences a walled garden fear response to artificial intelligence’s looming tsunami of low cost content.

I myself am going through an exercise of ruthless prioritization of my own focus and find. As in any portfolio, write downs are inevitable. It’s easier to write something down when it’s money. Investments of time, energy, social capital and presence are much harder to let go. A sunk cost never boils? A watched pot never catalyzes? Sometimes a group or a movement chooses to remain outside their power.

I have so much less capacity to be present than I’d like. Others may prefer to be distant and still shower up but I find I’m happier with boundaries that are firm and great remove. That means when I do show up you have my full and intimate attention. It’s only right.

You have to prune in order to blossom. One commitment I’m excited to see blossom is the exceptional work of Jonny Miller. He and I will be hosting a Cultivating Calm Workshop for founders and venture capitalists interested in how to apply nervous system regulation techniques to their startup journey.

August 10th at 11am MTN join myself & Jonny Miller for cultivating calm.

As more of us rise up the acceleration curve of artificial intelligence and must maintain our capacity to sense-make, this will help your mind and body function in a chaotic world.

I myself have taken Jonny’s Bootcamp, intend to be in the next cohort (my code JULIE gets you a discount), and I’ll be sponsoring a founder to attend the September cohort so consider this a chance to see if these tools are right for you. My revealed preferences tell you what you need to know.

Categories
Emotional Work

Day 903 and Life Goes On

I just didn’t want to write today. I am all over the place with pain and grief even as the world keeps on spinning. I lost someone very important to my family yesterday. A matriarch if you will.

My biometrics are a mess. You can see the stress spiking as I got on calls to both do business and then also discuss the business of life afterwards. Because life does indeed go on. My Whoop said I had 108% more stress today than a typical Thursday if you want to know what grief does to your stress levels.

My Whoop detected grief

I have written so much today on so many other mediums. I’ve texted and direct messages and tweeted and probably wrote several novellas in various group chats. But I just couldn’t make myself write my essay here. So like I would on any other day, I’ll give my myself permission to carry on. I’ll tag this, Tweet it and go to bed and hope I can do more tomorrow.

Categories
Chronic Disease Travel

Day 889 and Soul Delay

A girlfriend asked me if it felt good to be home in Montana. I said I wasn’t sure as my soul hasn’t landed home yet. I think it might be somewhere over the Arctic at the moment.

She knows, now, absolutely, hearing the white noise that is London, that Damien’s theory of jet lag is correct: that her mortal soul is leagues behind her, being reeled in on some ghostly umbilical down the vanished wake of the plane that brought her here, hundreds of thousands of feet above the Atlantic. Souls can’t move that quickly, and are left behind, and must be awaited, upon arrival, like lost luggage.

William Gibson – Pattern Recognition

I don’t feel like I’ve really landed yet even though I’ve been home for a full day. My body is going through various forms of blowback and regression as I resorted to Prednisone while in Europe.

I’m itchy and in pain and simply going about my routines despite it all. Rhythms and processes run my life because I’m a traditionalist. What you do every day is what you become.

Everything physical I do has a cost and nothing is higher cost than travel. I am bearing those costs at the moment. Blessedly the costs feel removed and remote as I am a perhaps disassociated as my soul may or may not be somewhere over Greenland.

So if you’ve not heard from me it’s because I’ve got a bit of soul delay with my jet lag. Or a bit of jet lag with my soul delay. You can expect reintegration soon.

Categories
Travel

Day 886 and Breaking Camp

When I travel I prefer to set up a base camp. I do things from one place regionally for a month. I have a lot of accoutrements that come with me and I travel. Having a disability like a chronic spinal autoimmune condition is a huge pain in the ass.

After I have my set up I try to run with a regular daily routine when I am abroad. Additional stresses like jet lag, heat, new allergies, a suppressed immune system that easily picks up a stray infection (skin is my most common vector not lung these days), and other more quotidian travel stresses all hit me hard.

I do my best to take care of myself when I travel as any hitch in my routine can mean lost productivity. I plan my trips meticulously.

Today I am breaking down those routines. Packing them back up into my three bag cascade crisis management packing solution. Because what can go wrong will go wrong so plan for every scenario you can envision. Then you pray the unknown unknowns don’t get you.

Travel is an elaborate cost benefit analysis for me. If you do what you love you will never work a day in your life. And I do love calculating my inputs and seeing if my outputs breaks as predicated.

If not then I learned something new about what to model for next time. Breaking camp is where I see what I can improve. And what I did well. Everything has its cost. And I take responsibility for it.

Categories
Biohacking Emotional Work

Day 885 and Grieving Your Many Deaths

The most soothing statistic I’ve ever hoped was true is that your body turns over all of its cells every seven years. It seems to be functionally close to true. Every cell, except those in our brain, our heart and our eyes, does indeed participate in some form of cellular renewal.

Our bodies replace many of their nearly 30 trillion human cells regularly. About 330 billion of those cells are replaced every day — that’s about 1 percent of all our body’s cells. Other cells, like the tiny ones in our gut, renew within a week.

How Stuff Works

I’m not much for dreams of eternal life. Chronic disease tends to give you a bit of appreciation for Sisyphus and the torture of daily physical embodied indignities. But give me the hope for constant change and you’ve got my attention. And yes I moved a lot as a kid who do you ask?

Doesn’t 1% renewal day seem both manageable and swift at the same time? It’s one of the recommendations I give to folks who are interested in biohacking. Change one variable by a small percentage every single day. Big changes come from compounding over time.

It does make me wonder if I’ve taken adequate time to grieve the many versions of myself that have died. The ghosts of old versions of Julie haunt me. Every time Scotty beamed you up, imagine the last version of you that was killed on the transporter pad. Ghost stories right?

I’m not the same person I was yesterday. I’m not the same person I was a month ago. If I look at how much change I’ve undergone in just the last year it feels dizzying. If I consider how different June of 2023 Julie is from June 2022, I’m barely the same person.

I take solace in the 1% renewal. That even if this version of myself is suffering, I am building a future version of myself that compounds into better versions. Seems like we should be grieving a little every day doesn’t it?

Categories
Culture Preparedness

Day 883 and Ride the Edge

If you aren’t comfortably with the current standards of living on average, I’d consider shoring up your resources now. As our planetary resource situation doesn’t appear to be getting better.

As more first world countries come to terms with slowing growth (perhaps even degrowth), resource scarcity is going to affect daily life in uncomfortable and visible ways we can’t smooth over with shrinkflation. If you aren’t prepared to live life on a harder setting, you should begin as soon as you are able to prepare for that reality.

I’d like to think about this problem with a bit of distance. What if we have a coercive state and social consensus for something you’d consider a personal preference or choice, but civil society views as as deviant? You will need to find ways to look like you are conforming even if in private, you are not. So how do you do so?

You may find it helpful to not stick out. In that situation there are two ways to survive an attack. Being protected and in the middle of the herd. Or be as far away from the herd as you can be.

Anyone on the edges of the herd of social consensus, but still within the second or third standard deviation from the norm may get hurt. Forced metaphor of the brutal blue curve but you get what I mean. Better to be a true outlier, as the secondary standard deviation will be forced by a brutal bell curve to fit in better.

If we add in artificial intelligence to the equation, we’ve got even more effective tools for monitoring and surveillance of out-group behavior and even easier mechanisms to deploy social shaming force at scale to insure social adherence. The panopticon is us. An army of Karens armed with the probability you will deviate waiting to pounce.

See for instance a social shaming quote tweet campaign. Now imagine it’s state sponsored propaganda but organized, through the seemingly spontaneous egregores of populism, add a dash of rule by authoritarianism and you’ve got yourself quite a problem. The wisdom of crowds can look like mania.

I got a small taste of being shamed yesterday by my neighbors in a Frankfurt Airbnb. Air conditioning use is frowned on in Germany now for both social reasons and also failing energy policy. Shutting down the nuclear power was a bad idea.

I’ve been suffering from an autoimmune issue, exacerbated by allergies and pollen, so I’ve used the air conditioning on 80 degree days. This was enough to get my neighbors to complain to me twice. I attempted to comply by going to a hotel but quickly found that no hotel would let me turn the thermostat below 72 degrees.

I decided to brave the noisy neighbors and run the air conditioning at the Airbnb in the end, but I didn’t appreciate having to lay our personal health problems to justify a private decision. Now extrapolate this out to genuinely serious situations. The disability issues are often an early lens into wider social attitudes on freedom, choice, value and worth.

You have to decide now if you want to hide in the middle of the herd. Can you pass? Are you able to fit in or do you have some deviance in your life? If you aren’t sure you can pull off average, you must ride the edges. Be as far outside the herd as you can. Maybe on the edge you can find a pack that will defend you.

Categories
Chronic Disease Travel

Day 882 and Disability & Energy Policy

I hate when I am made to feel embarrassed and ashamed by my disability. And the German’s current energy policy has me feeling like my medical needs are something of which I should be ashamed. And that’s bullshit. It’s a policy failure.

I have ankylosing spondylitis (an inflammatory condition in my spine) along with a cluster of other autoimmune issues like allergies, migraines and dermatitis. If my symptoms flare I can’t walk and the treatments are unpleasant. Methotrexate, steroids, specialty biologics injections.

I live in chilly dry Montana as the cold is better for my condition than the heat. But when I travel I am confronted with heat, humidity and pollution which exacerbate my symptoms. Sometimes significantly. It has caused great anguish through its impact on family gatherings.

I find myself in Frankfurt for a mix of personal and professional reasons. The Airbnb I rented for the month was one of only a handful that offered aid conditioning at all. And one of only three that was a personal apartment and not a hotel service using Airbnb.

So I booked it even though I noticed it was on a main road in the neighborhood of Sachsenhausen. The host assured me it was quiet and most of the apartments looked out on a garden in the back.

Alas the bedroom was on the main road so I was unable to ventilate the apartment by keeping the bedroom windows open as the exhaust and debris from the roadway left my eyes red, itchy and I woke up with hives several times.

I bought a small fan at the local store and kept the bedroom door open and had the fan blow cooler air from the back windows overlooking the garden. I was still struggling with ventilation as the car exhaust and fumes meant the bedroom had to be sealed. Even then I paid $50 for a cleaner weekly to clean up the pollen, debris and dust that would get in from leaving open the window

I’d leave all the windows open on the good side, keep the apartment sealed and dark during the day, and have three weeks of extremely shitty sleep on my Whoop to prove it. But overall this worked well until it got hot enough to warrant air conditioning usage.

Sadly summer is rounding the corner and a few days in the low 80s (or 27-28 C for you Europeans) was too hot for my spine to tolerate comfortably. I was struggling enough with keeping the bedroom cool with the fan and back open window so I decided to run the air conditioner. It was old, noisy and hadn’t had its filters changed in a while. I made do.

The neighbors complained. Twice. Once through the Airbnb owner and the second time by knocking multiple times on my door. I had to explain to them embarrassing levels of medical detail to assure them this wasn’t preferred temperature or taste but a medical necessity. I hadn’t expected to show off my vials of injectables to be taken seriously but thanks guys. They wouldn’t back off till I showed my records and medications insinuating I was both a bad person and that authorities could be involved.

This weekend it is expected to be in the mid eighties so I thought rather than fight off my neighbors and get another bad night of sleep with a dirty air conditioner and noisy roadway I’d check myself into a hotel. I’d been having a significant flare of all my symptoms which had required emergency doses of steroids, two unexpected infections (I take immunosuppressants) with two different antibiotics, and quite a bit of other remedies.

I woke up with strain and in a sweat. Antibiotics & steroids are fun

Well I guess the final boss of Europe’s poor energy policy was about to land it’s final blow on me. The hotel I checked into for some relief won’t turn its air conditioning below 72 or 22 C. It has to be much warmer to get it to my preferred temperature of 17 while I was experiencing this flared fever state. That apparently wasn’t an option.

So I guess I’m going to check one more hotel to see if they will allow me to cool my prior to my preferred temperature or I’ll prepare for another fight with my neighbors over running the air conditioning overnight again. Wish me luck. Build more nuclear power. Install solar arrays.

Categories
Biohacking

Day 881 and Set a Timer

I’ve always been the type of thinker who enjoy playing with differences and similarities. I find it pleasing to see common attributes of humanity. I’m soothed seeing we are more alike than not even across vast genetic & cultural distances.

I equally enjoy spotting games of “one thing is not like the other” as part of the general pattern recognition that evolutionary Darwinism implies. The freaks and mutants are who push us forward. Recognizing the value of positive differentiation is the basis for every job I’ve ever loved from fashion to finance.

This might be why I enjoy tools like timers, trackers, spreadsheets and other measurements of inputs and outputs. I like inferred knowledge and probability. Those goofy old standard test questions “this is to that: as that is to this” were my favorite.

I understand how totalizing using these tools can be. I’m currently experiencing the intense urge to smash my Apple Watch as I am asking it to “set a timer for 45” minutes several times a day. I’m setting shorter timers too.

I am spreading out a biohacking regimen while my body goes through an ugly symptom flare that suggests both allergy issues and a general immune response to what I believe is an infection from some scratching that opened my dermatitis. Fun huh?

The expectation that one’s body is unique and an N of 1 pairs poorly with averages, reversion to the mean, and the persistent beeping tinging ringing reminders of a timer going off telling you to follow the routine. So here I am wishing to some spreadsheet brained hope that my inputs and outputs will balance and I will be fine if we got the dosing right.

Which is the prayer of everyone who has ever experienced a medical malady. Set a timer, wait, and pray to an actual God as the ones in our phones aren’t up to the task of being deities just yet. More like having a troublesome djinn that promises the pain will go away if you do exactly ask it asks.

Categories
Chronic Disease

Day 880 and Pollen

It seems as if I exposed myself to a bit too much pollen in my wandering yesterday but I’m so itchy I’ve reconsidering whether pain is more or less all-absorbing than itching.

So I am giving myself permission to take it nice and easy on this blog post today. This morning I ordered an enormous number ($150 or so) of creams, unguents and lotions as well as a number of anti-histamines from a German apothecary in the hopes of gaining some relief.

Drug Delivery By Wolt
An assortment of German antihistamines and a few fun free samples as I guess I spent a lot.

I take multiple antihistamine already but I got a fourth (it’s Claritin in the US. A got a corticosteroid cream, something called Zugsable or black cream (it smells like tar) and a Linola Fett cream which appears to be like Weleda skin food without the fragrances. Plus some melatonin as I’m not sleeping so great with this itching. They tossed in some cosmetics as well which I will definitely put to use. And that’s all she wrote today.