Categories
Biohacking Medical

Day 1003 and Externalizing

My body gave me a bit of a surprise on the road. I keep a close eye on my inflammation as it’s the first trigger in my autoimmune condition. Generally it manifests internally as swelling in my spine or joints. But it didn’t always. My inflammation used to manifest externally on my skin.

I woke up today in Tallinn without my typical spinal pain but covered in red welts. If I had to guess, some change in climate, pollution, or weather was the culprit. Stress is stress and you can’t always predict how it manifests. I’m so used my body being in pain I’d forgotten that sometimes symptoms can just as easily manifest on the outside as the inside.

It takes an entirely separate set of medications to manage inflammation on my skin as it does to manage inflammation my joints and spinal column which is a bit of a pain in the ass. I am much more eager to treat it. Maybe it’s easier tolerate being in pain than being red and itchy. You’d think it would be the other way around.

Given that my body feels a bit stressed I’ll keep this short today. Hopefully the manifestations of inflammation calm themselves down and I won’t be dealing with either tomorrow.

Categories
Homesteading Medical

Day 987 and Eggs

One of our hens died today. My husband took on eight chickens from one of our friends a month ago It was an exciting moment. He really wanted chickens and it felt like great luck.

The family was moving and so Alex stepped in. If it were just me alone I probably wouldn’t have any animals as I don’t necessarily always have the physical capacity to do daily chores. I realize that’s a funny statement for someone who lives on a homestead in Montana but you get used to your limits and work around them.

But my husband lives for doing shit. I call him a “man of action” as he’s happiest when working on something. Chores and animals and homestead work are a hobby for him and I’m deeply grateful we could bring that way of living into our lives. I am envious that he has the capacity as there are few joys as deep as improving the world around you. I wish I could do what he does.

So it’s sheer bad luck I find myself on my own when one of the hens died. Alex was literally gone for a day and one of his birds dies on me. I feel responsible for the death even though I know I am not.

Death happens. Chickens are strange finicky animals and do in fact sometimes just up and die. I’m capable enough with death. I did plenty of farm work as a kid. But I’m not the one who does the bulk of the hard physical work and never will be. I contribute other things.

I simply wasn’t expecting that with just one day on my own being responsible for the hens that something bad would happen. But there I was finding myself responsible for dealing with the physical reality of a dead bird on my own.

I happened to have a doctors appointment in town this morning so I didn’t check on the chickens when I woke up. And that’s what I feel worst about. That I didn’t even notice.

I got in the car, went to get my own eggs checked (a follicular ultrasound if you are curious) and came back to find an entirely different egg problem on my hands.

I went to collect the morning’s eggs and saw a red hen laying underneath the raised coop. I briefly panicked wondering what the fuck was I supposed to do. She was clearly dead and I’d missed it. I’d just left for town without even checking on the hens.

I panicked and tweeted that I’d had no idea what to do. And then I found the heavy duty trash bags and nitrile gloves and moved the carcass out of the coop. The remaining hens seemed disturbed. The leader of the group in particular was quite vocal and came up to me as I was moving the body.

They didn’t seem to mind the body in the coop but began loudly clucking at me as I pulled her out. Did you know that chicken rigor mortis sets in about three to four hours after death? I do now. The body was in rigor when I found her so she had clearly died overnight.

I feel horribly guilt that I didn’t check the hens before I left for the doctor. But what would I have done? Judging by the rigor she was dead before I woke up.

I’m not sure I could have done the clean up quick enough to make my appointment. But the idea that the hens were just poking about next to their dead compatriot for any additional time while I went about my business of living seems horrifying. I guess that’s my own human bias setting in as they didn’t seem particularly disturbed by the body only by me removing it. I bagged it and put it in a bear proof trash can. I pulled up poultry disposal procedures and asked my internet friends what the duck to do next.

Some of our neighbors came over after their workday to help me dig a hole in the back pasture to bury the body. Digging a hole 3 feet down to keep the predators from sniffing it out is the recommended procedure.

I wasn’t up to the task of digging a grave on my own. Mostly because I’m not good enough with the tractor to get the post hole digger mounted. Thankfully I had help.

The remaining hens had laid three more eggs in the intervening hours. I had also learned in those hours that my ovaries were producing more than ample follicles. It would seem that, like our hens, I produce eggs in adverse conditions too. The circle of life in just one day.

Categories
Medical

Day 983 and Down For The Count

I have been felled by a migraine today. I’ve been unable to tolerate light, noise or food for a little under twenty four hours. Probably one of the worst migraines I’ve ever had but my suspicion is that it’s tied into a few other issues.

My husband was struggling with some type of infection. It never popped at Covid on tests but given the prevalence of various forms of colds, flus and other illnesses popping up in the back to the arena phase of fall I wouldn’t be surprised if we were both fighting something off.

I am hoping that staying in bed and drinking gallons of water and electrolytes will pay off tomorrow. The intensity of the pain has been unpleasant. Add in nausea and I’m mostly staying still and praying for relief. I’ll catch you all tomorrow.

Categories
Biohacking Medical

Day 974 and Flare

As most casual observers of this daily log have probably noticed, one of my main interests is biohacking. It was a hobby in the time of my life I mislabel as “before chronic illness.” It’s not accurate so much as recency bias. I’ve been into biohacking my whole life because I’ve had to manage an unruly body.

I had the best health of my life between 24 and 34. I am rounding the end of my 39th year as I write today. I didn’t think of myself as being chronically ill for that decade.

Probably why I think of my life as having a “before” illness is more that I’ve been in the worst flare of my life for the last five years. It came crashing down with a one two punch of being a startup founder & getting pumped full of hormones for fertility treatments at 33. I was on bedrest and chemotherapy drugs by the time I was 34.

So I have to remind myself there is no time before chronic illness. There was remission. I had long years of robust health interspersed with autoimmune diseases that flared and were contained.

Diagnosis has been a lifelong battle which started with inflammatory skin conditions and horrendous allergies and ended up with the inflammation going inside my spine and joints. Ankylosing spondylitis and psoriatic arthritis is what codes with insurance.

Looking at my health records, I had my first issues at 7 when I entered school, then after puberty as teenager around 15 & 16. I had to drop out of high school and ran a giant let of standardized tests to claw myself to university.

I was hale for college and my first startup but flared so badly after the acquisition of my first company I was put on an experimental immune reboot protocol. Ask me about being put on cyclosporin without an organ transplant.

My most recent, worst and longest flare was in the five year battle after doing IVF and egg freezing in my early thirties. I’ve only really felt like I was able to work my preferred hours this past year. So perhaps that flare is finished. I don’t want to tempt it. Though I yearn to live harder & faster and bigger.

Writing it all out in a timeline makes it seem like the pattern is introducing change and stress into my routines but also there are two big incidents involving hormones. Being put on birth control as a teenager and then whatever the opposite of birth control might be with IVF. Maybe no more synthetic hormone control for me.

Managing your health isn’t easy for anyone. It’s particularly challenging for me. And if the current post pandemic climate is any indication a lot more people are grappling with poorer health. I wish I could offer more help other than saying it’s not easy but flares can be contained. Sometimes with a lot of pharmaceutical intervention. Sometimes with better habits. Sometimes with time. And sometimes it’s just a crap shoot.

Categories
Biohacking Medical

Day 949 and Stomach Stuff

I was very excited for today. My first Monday with my new schedule after my “season of no” cleared the calendar.

I am into the day brimming with optimism. Naturally, it was only fair that I lost my entire day to some kind of stomach bug.

I am experimenting with a new GLP1 agonist and have found the side effects to be troublesome. I made an attempt to have a protein shake and it cascaded from there. So I don’t have much to say today except that my biohacking went awry so I’ve got little to say.

Instead I’ll recommend you go read my post from yesterday on assigning value. It’s some thoughts on alignment for artificial intelligence and the impossible task of being sure we all share the same idea of value.

Categories
Chronic Disease Emotional Work

Day 931 and Open Calendar

I am about to sunset a long-standing weekly appointment that has been on my calendar for literally years. And I was surprised to discover how much getting back that time made me happy.

The block on my calendar was for something I very much loved doing and valued highly, so the sheer joy was unexpected. But as it turns out I loathe having a consistent obligation on my time.

This isn’t to say that I don’t like being responsible, reliable, or on time. But rather I like knowing if something comes up that I have some flexibility. And I don’t like to disappoint people by needing flexibility.

My suspicion is that this represents some lingering guilt I have about having a chronic disease. While I rationally know that I did nothing to deserve being sick, I do carry a self limiting belief that being sick is a weakness.

I’ve always prided myself on being a “mind over matter” person. I’ve shown up to countless events, meetings, pitches, and other obligations while in pain. I’ve been known to repeat “Michael Jordan, Game 5” as a mantra to remind myself that I can perform in even the worst physical circumstance.

Michael Jordan famously played and won with the flu. And the logic in my mind was surely I can do the same when something is on the line. So I always have. If someone expects me to show up and perform I do it even if I am struggling.

But as my season of no has begun I think it’s time I stop romanticizing my capacity to work when sick. I love having my time back on my calendar and I love the flexibility that I have to work whenever and wherever I want.

Maybe some people would chose to work less under these conditions. For me though, having more flexibility in when I show up means I’ll find even more time to put into my work. Because I love showing up for me. And sometimes it’s easier for me to show up when it’s not a damn calendar block.

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 902 and The Singer Lasts A Season But The Song It Lasts Forever

One of the matriarchs in my life died this morning. I am devastated. Because, of course, you are devastated when you lose someone you love. To not know the pain of mortality is to not know your own humanity.

We spend so much of our lives in the art and literature of the human condition that we can sometimes forget we are actually living it out right now every single day.

Your own life is just as rich a tapestry of meaning anything Dostoyevsky ever wrote. Losing someone close to you who really lived their life occasionally gives you sparkling moments of crystalline clarity on what matters.

All of living is struggle. We find the boundaries of the world through trial and error. We find each other as we negotiate the rhythms of each other’s lives.

The old cunt had the balls to die on the summer solstice. She was extremely Swedish so on aesthetics grounds I feel happy about her moment of passing. Midsummer. What a witchy thing to do. I love it for her even as I am weeping.

The last thing she said to me was so poetic it almost makes me angry. She told me that she had repeated herself a lot across the years. I said I knew and I appreciated that she’d helped me learn the tunes by repeating the songs with me even as I stumbled to commit things to memory.

Her response? Now that you have sung the melody with me, you can sing it on your own. Which is a very beautiful good bye worthy of anything I’ve ever read in a book or seen on screen.

But also the fucking temerity of that woman to deliver folkloric wisdom on the way out. Our elders know a thing or two.

The singer lasts a season long, While the song, it lasts forever

Unknown (to me at least) folk song

May your solstice be as bright and true as mine. I will be trying to carry this tune on my own and if you like I’ll try to teach you to sing along with me. May we have a chorus of love songs on our longest day in the sun.

Categories
Emotional Work

Day 900 and Let It Go

It’s nice to have another milestone day on my journey to write every single day. One hundred more days of writing till the big milestone that seemed unreachable when I began.

I have so much constancy to be proud of as I look at the body of work I created. I gave myself permission to let myself show up every single day and just start doing shit.

It wasn’t always good. I have up and down days of quality, quantity and even basic legibility. But because I have let myself be free I came with a week of bangers.

I am trying to let a lot go at the moment. Family is sick. A few are so ill we fear for their imminent loss. The world is shifting and the sense of change and acceleration towards something is palpable.

So many of us are fearful. But what else can we do but let it go? Wasn’t that the point of Disney’s mash hit? It’s a relatable multi-billion dollar franchise because it’s reflecting the human condition.

There is so little I have control over in my life. But I also have so much agency. If I chose to accept my life, and the choices it offers, I have so many possibilities

The present is here with us with all its many demands. Don’t borrow trouble from the future. Live your life prepared to let go of what you cannot change with as much responsibility and agency as you can for what is up to you.