Tag: Chronic Disease

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Emotional Work

Day 959 and Averages

I did not react to a drug in an average way. I’m really pissed about it. I went in so confident based on what the studies has shown. We’ve got this fantasy of science and specifically medicine that has very little appreciation for what it does to outliers.

We discuss what’s most likely. What’s average. What’s typical. We explain the difference between mean, median and average. We have rigor. We have regressions. We can come to an understanding of what the models agree is conforming to our understanding. You should probably see these results.

And then we gloss over the bad data. The outliers. The grits of sand. The flecks of reality that make your model jitter. The shit that just makes things more complicated. So maybe you toss it out.

And it mostly doesn’t matter. Because your body probably is pretty average. And that’s a great thing. We tell stories about what it means to be unique even as you are no different than anyone else. Pixar movies are about our ineffable spark of humanity soul even as it reflects on how we are all really just the same. Shared human experiences are universal. Probably because our bodies are pretty similar.

I sincerely believed I was average for most of my life. I was raised with that as a value. And now as an adult I see how I’m average in so many ways. But my body will never fully reflect a shared reality. You get to know what works for you even if you know what boundaries are a little different for you.

You’ve got to know the contours in which you are exactly as your reality would indicate. That’s your ego speaking generally. But the ways in which you are not matter too. That’s where you tailor treatment.

Categories
Biohacking Chronic Disease

Day 953 and Sugar

If you’ve been following me for a while chances are good that you’ve seen me discuss my biohacking.

I’ve got an autoimmune condition called ankylosing spondylitis. It’s a form of arthritis in the spine. When it flares the inflammation can be so painful that basic tasks like walking or standing can be out of the question. It’s impacted my daily life in strange and sometimes sadly poignant ways.

Now thanks to the wonders of modern biologic injectables like interleukin inhibitors (my lucky number is IL-17h), non steroidal anti-inflammatories, the occasional round of chemotherapy workhorse methotrexate, and the ultimate big boss inflammation killer known as prednisone I lead a pretty normal life.

I am however always looking for new ways to improve my situation. You name a modality of healing and I’ve surely done it.

I’m regularly throwing myself at new pharmaceuticals, new workouts, new devices, and new routines. I track it all obsessively. If you want a 10 day water fast buddy call me.

This kind of thinking means I am prone to optimism and the occasional “one weird cure” line of thinking. The hope that springs eternal is the fantasy what ails can fixed with a gluten free diet (nope) or the du nude Goop wellmania cure which costs $500.

One of my biggest “I’ll be cured” fantasies is that the extra body fat I gained from multiple rounds of steroids and hormone treatments is actually the cause of my health problems and not one of its symptoms.

Notice they I don’t say biggest fears. My biometrics don’t really suggest that adipose tissue is my root issue. Being fat is a core problem for many people but for me it’s a symptom. I don’t want to disclose said biometrics as I fear insurance companies and pharmacies might decide to dig.

In pursuit of a cure for this symptom, I’ve been way ahead of the GLP-1 agonists like semaglutide. My Novo Nordisk and Eli Lily stockholdings are up 100%. I had success on Ozempic but went off it as the side effects got to be too much for me after nine months when I reached a healthy body weight.

But I recently I paid out of pocket to try Mounjaro as I’ve not happy with where I am currently at for excess adipose tissue. It’s supposed to be less brutal on the stomach. It’s got a duel mechanism as a GLP-1 and GIP receptor have lead to excellent clinical trial results.

I’d say about three weeks in those results for me are not forthcoming. I’ve been in a perpetual state of low grade anxiety that seems to be from hypoglycemia. I’ve been sluggish, cranky, moody and my mind unfocused and hazy.

As it turns out the glucose-dependent insulinotropic polypeptide receptor (GIP receptor) primarily affects the body’s physiological response to food intake and blood sugar regulation. So I’ve got low blood sugar.

Luckily throwing fruit at the problem helps the symptoms. I have not lost so much as an ounce though. I think I’d rather go back to Ozempic which at least took weight off. I’d rather have a fucked up stomach than a fucked up mind. Maybe other people need to eat less sugar. I guess I don’t have that problem.

Categories
Biohacking Medical

Day 927 and Standard Operating Procedure

I’m going to be nursing my husband through oral surgery recovery this week. He’s run out the clock on wisdom teeth and they all need to be removed.

We will miss a few obligations this week but such is the nature of medical need. Necessity doesn’t always come when you want it. If we don’t do it this week we’d be waiting till November for the next appointment. Such is getting medical care in this day and age.

I’ve been in a bit of a frenzy preparing as I myself have some medical issues that are chronic so if we are both fucked up physically it gets a little tricky to manage routines. Particularly because we live a little bit country these days in Montana.

I’ve gone down a deep rabbit hole of procedures for surgical recovery. I looked up standard operating procedures for inflammation and surgical recovery from every source I could find. I consulted with our doctors. I looked at risk factors.

You’d be surprised at how optimal procedures differ from the standard median recommended ones. The fear of overprescribing pharmaceuticals runs pretty rampant even when it’s clear that some protocols would be beneficial like say post surgery prophylactic antibiotics. The NIH, Mayo and Cleveland Clinics agree it’s a effective way of preventing complications related dry socket. The condition can turn into a painful infection that is relatively dangerous if it gets out of hand given it’s proximity to your brain.

But we can’t make an antibiotic standard operating procedure as it’s not technically necessary. Especially since we have prioritized using less antibiotics overall as a public health policy for the wider social good of preventing antibiotic resistant strains of bacteria. Good of the many versus good of the one. I’ll admit I’d be inclined to say that my husband deserves the Spock treatment even if it is illogical.

I’ve written out an hourly schedule for the recovery procedure I intend to follow. I won’t post it all here as it’s obviously not in my best interest to disclose it. It’s involved and intended to reduce inflammation and have the maximum pain management that is responsible so that my husband’s body can recover quickly with no unnecessary stress.

Proteins powder, bone broth and soft foods

It seems as if a lot of recovery comes down to simply retaining adequate electrolytes balance with enough liquid calories. You have to meet a macronutrient balance that gives enough protein to knit the tissues and not make the body think it’s resource constrained. Which is harder than it sounds when you can’t chew or even suck on a straw.

I’ve got a number of techniques to leverage from lymphatic drainage massage to the woo woo options to reduce stress and promote recovery and I intend to use all of them. And yes I’m available for nursing.

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
Emotional Work

Day 891 and All Alright

I am trying to practice detachment and still enjoy the present moment. A set of secondary side effects from an antibiotic are unpleasant in the extreme. But as the theme of throwback 90s hit “That 70’s Show” so effectively proclaims, “we’re all alright, we’re all alright!”

While it is true that what is in our body will show in our emotions, it’s perhaps more accurate to say that our emotions are showing up in body. A bio-emotive framework gives you more freedom to experience the full range of life without judgement.

I have done my nervous system exercises, I have treated the side effects as best I can with pharmaceutical intervention, I’ve rested quietly in a dark room, I’ve been outside to facilitate circadian rhythm return, I’ve eaten protein and I’ve stretched.

I’ve run the processes and routines that set me up for a good day because you don’t let one bad thing turn into a hundred bad things. Even as I’m experiencing unpleasant moments, I know I have to bear these smaller costs as an investment on a better tomorrow. It’s hard to hear that everything has a cost, sometimes too much of a cost, but being detached about the calculations helps. If something must be done it’s all alright. I promise.

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
Startups

Day 887 and Twenty Twenty Four Hours To Go

And I wanna be sedated. Alas I do have something to do and places to go. Namely home. So I better hurry hurry hurry before I go insane.

As I’ve covered at enormous length, I do not care for travel. My reoccurring nightmare is packing for a trip that never comes. A liminal state of impermanence, in which I must be prepared at any moment to grab all my belongings and leave.

My month in Europe flew by. I hardly noticed the time. Some of that is due to tie up and down nature of travel stresses. Most of it flew by because I was having fun.

I learned a lot on this trip. I learned about racism and pluralism and the ever present dangers of populism. I learned about green energy policy failures. I learned that freedom to travel and transact is a privilege reserved for the select few who have good passports. Colonial legacies and festering wounds from resource wars and genocides still keep borders closed. We are not yet one human species and it will get worse before it gets better.

As much as I am looking forward to being home in Montana for our glorious summers, I am leaving behind some pieces of my heart in Europe. I’ll be back soon. But only once the weather has cooled down again. Climate change and chronic illness are not good bedfellows. But in twenty four hours or so I’ll be home. And I hope to recover quickly from the stress of travel.

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
Medical Preparedness Travel

Day 884 and Who Hurts First

I spend time in Europe for professional reasons. Some of my founders are unable to reach the United States as our visa program has become untenable. So I spend time in places founders can reach me. Trade crossed all borders.

Just in the last two, I’ve had Nigerian, Indian, Albanian, and Russian Jewish founders years find themselves unable to secure visas to visit America, not even for professional conferences or tourism. It is much worse with HB1 or O1 visas. You may not think this problem doesn’t affect you, or may even benefit you, but can I assure you one day it will affect you negatively. American industry was built by immigrants.

At first I thought I could simply work around America’s travel restrictions. Capitalism will overcome the inequalities our states have wrongly thrown up to divide us.

But I am learning that climate change and failures in sustainable energy policy is making it much harder to travel with a disability or chronic medical condition. Heat is a strain some bodies can’t take. And mine is one of those bodies. Migraine sufferers are too. So are the elderly. It’s quite common.

Last year I briefly did that American thing where we pretend we the Mediterranean lifestyle is aspirational by spending two weeks on the Ioan Sea. Utter disaster. I am not calling White Lotus a liar, but I couldn’t possibly imagine how hell could be worse than a heatwave in Sicily in July.

Watching the Germans treat air conditioning use like some sort of criminal shameful behavior was a vivid reminder that society always chooses who we hurt first. A policy that is for the common good may find uncommon hurt delivered to those we didn’t consider. It’s not deliberate but it may as well be.

If you paid attention during the pandemic you probably learned a lot about how we treat the sick and weak. Now imagine yourself as an one of them. It’s almost enough to make you consider becoming a reader of Rawls.

The end result for me is that I don’t believe I’ll be traveling to Europe except in the winters going forward. I can’t risk the lost days of productivity to something stupid like a default hotel setting for 72 degrees. I feel a bit robbed by this. Grief even that even late May is too risky to be on the road.

It’s a small thing to have your travel be restricted in a world of bigger sorrows, but the feeling of having your opportunities narrowed hurts. I’m sad because a utilitarian neoliberal wonk decided that most people would be perfectly comfortable with slightly warmer rooms. The finance teams at the hotels agreed. It’s not so bad. It doesn’t bother them. I wonder what other decisions won’t bother them. And whether they will hurt me unintentionally.