Tag: Chronic Disease

Categories
Internet Culture Medical

Day 1069 and Fever

I both literally have a fever in my own body while I am watching a fever burn through one of my favorite extremely online communities in the form of effective acceleration memers versus a heavily armed establishment unit of academic utilitarians. Who would like you to know they aren’t effective altruists I’m sure.

I myself enjoy a good internecine debate as I became a Calvinist as an adult because fuck it the Reformation is the home of the institutional skeptic. Flame wars are the modern 95 theses. And naturally everyone involved thinks their counterparts are reactionaries. Tyranny of small differences.

I’d say more about this but it’s later in the day and like I said I am running a fever. My immune system is remarkably active so I’m honestly shocked a fever got through at all. I actively beat my immune system into retreat so whenever it gains ground I am annoyed and confused. So it’s probably best if I sign off as it’s never a good idea to be letting your fever dreams get the best of you.

Categories
Travel

Day 1064 and Faster San Francisco

I am energized by my day. Any residual pain from the challenges of travel have been mitigated by rest, exercise, meditation and lots of medication.

If I could to give only one argument in favor of acceleration, it would be our capacity to improve medicine. I’d like to find a cure to my ankylosis personally, but it’s bigger than all that. I believe we should do everything we can to improve the health and well being of humanity.

I do so much to balance my own health and wellbeing just so I can keep working and contributing to the startups I love so much. Often I miss so much of life that others take for granted like socializing together. Hobbies, socializing and much of the tapestry of living together is off limits to me as energy budget is too high.

I’d like more capacity in life so I can chose not only to work, but to go to meetups, dinners and whatever else folks get up to in their leisure and community hours.

I am not one for FOMO while I’m in bed recovering, but on the occasional day where I get to do leisure activities I am reminded that I could have more of life if we agreed to prioritize the acceleration of medicine. My energy budget is only limited by the state of our healthcare.

On that note I’ll be at an e/acc meetup tonight in San Francisco. If you think you see me do please come up and say hello. I’d love to meet you. I’ll be wearing the leopard dress I have come to think of as the “spot me in the wild” outfit as well as three distinct wearables.

Categories
Chronic Disease

Day 1063 and Overclocked

Since acceleration is within my meme space so heavily I am pushing myself to go faster. Predictably that introduces some instability in my Julie equilibrium. That’s a fancy way of saying I currently feel like shit.

I’ve been a bit immobile for the last couple hours from hitting some type pain wall from overclocking myself. I’d hope it would pass so I could focus and write but it’s getting late on the West Coast and it doesn’t seem likely.

It’s possible this isn’t entirely the fault of excess strain from travel and it is in some manner hormonal. I wonder if at some point an artificial intelligence will be able to deduce my follicular and luteal phases by sentiment analysis on my blog.

Feels like a compelling argument for restricting government power over your bodies doesn’t it? Imagine the unceasing eye of Sauron collecting context clues about your reproductive system and the right to bodily autonomy goes poof.

Anyways I’m out for the night to go do battle with the pain so I can accelerate more tomorrow.

Categories
Biohacking Internet Culture

Day 1054 and Extra Strain

This year has had a number of absolutely crazy weekends where it’s felt as if the entire world was having the rules written overnight. Seemingly unrelated bits of the world will flare into supernova attention grabbers.

Off the top of my head, I can recall weekends devoted to aliens, bank collapse, room temperature super conductors, war in Israel and fear we’ve summoned artificial intelligence.

The fact that we can participate in the narratives as they emerge on social media means that every type of influence actor does just that. And it’s exhausting even as it’s occasionally a fun interactive game.

Today I found myself with a poor Whoop recovery and more physiological strain that is ideal. You can see it in my awful heart rate variability. Nevertheless I tried to stick to good routines, possibly to my detriment.

My afternoon went from enjoyable walk to migraine to a low stability.

You can see my Welltory data after I went for a forty minute walk. My HRV tanked and I went into a migraine pattern. Thankfully Imitrax, meditation, and a short non sleep deep relaxation exercise got me stabilized in about two hours.

Categories
Biohacking Chronic Disease

Day 1041 and Short Notice

I’m extremely frustrated right now. I didn’t get much sleep last night. I won’t get into the details, but it’s mostly because I was overstimulated by a very long workday after what was a very productive week.

I didn’t think it would matter if I was a little fucked up today from overexertion yesterday as I didn’t have any major obligations.

Except I got invited to mid-morning to something tonight. I wasn’t obligated to go but really wanted to do so as the guest of honor may end up having a significant impact on my life. And I’ve had an interest in it which I’d expressed months ago.

Now I had strong interest in attending as it won’t be a repeatable opportunity. So I wanted to push myself to go. I did my best through the afternoon to rest and prepare myself. But ultimately my body just couldn’t do it.

I cascaded into a migraine from the smell of my husband’s cologne. All my efforts to try to be restorative with the few hours of my afternoon were gone through a single small instance of environmental stressor. An obvious sign that I shouldn’t be going anywhere if something small could set off symptoms.

Now I’d like to say that I could have made it if I’d slept more. Maybe if I’d not worked so many hours yesterday. But I feel good about the things I prioritized yesterday.

But I am so fucking angry that I couldn’t have been given a little bit more notice as I would have found a way to make it. Literally even one day would have been enough so I could prioritize sleep.

It’s obviously no one’s fault. I’m simply furious that in an effort to budget my energy and physical capacity for what was my priority yesterday, I couldn’t find any remaining capacity today.

I guess the lesson is that if you want me to show up please let me know at least twenty four hours in advance. Or even just the night before.

Categories
Chronic Disease Emotional Work

Day 1020 and Subdue

I felt like I was on fire. Itchy skin, weeping eyes, coughing and wheezing, a sympathetic nervous system run amok. I was on my second histamine reaction in less than two weeks.

I have had two days of intense emotional work. One tragic aspect of a daily chronicle that’s public is dancing around some of the more private aspects of one’s life while still managing to write. I’ve been doing “a look ahead” exercise for the next decade with my family. Our goals and our challenges and our structures were all on the table. What do we want and how will we pursue it and what stands in our way?

So I found myself needed to sooth the systems. Reactivity is a choice. I wanted to feel my emotions but I’m less convinced I need to feel my hives.

So I downed 50mg of Benadryl, a couple other generic anti-histamines, a white girl downer, and I plugged myself into noise canceling headphones and a face mask. I did a few rounds of Non Sleep Deep Relaxation nervous system exercises. And slowly I was able to subdue reactions. I slipped into real sleep.

I feel better for it. But I also know I need more restorative time. Remaining subdued would be valuable.

Categories
Emotional Work Travel

Day 1014 and Choices

I’m sick. I’m in a foreign country. I feel fragile. The way life, and history, keeps progressing it’s not surprising that I feel fragile, sad, and wistful.

It’s my birthday today. I’ve been looking forward to the new decade all year if I’m honest. The final official marker of middle age is now mine. The childhood yearning to be an adult is now finally satisfied. There is no youth left for me. Only the joyful responsibility of shouldering my burdens.

I’ve never been good at making the safe choices in life. I make choices that are driven by my desire to live a life that makes sense to me. Those choices don’t always make sense to others. I take risks. I suffer their consequences. I pick myself up off the floor. I start over. My regrets are few and my experiences varied and colorful.

I feel proud of where I am in my life. I’ve failed in ways both significant and silly. Any success I’ve had were paid in full by my failures.

I am trembling between excitement and exhaustion at the prospect of the next decade of my life. I have personal and professional goals that are risky. Unlikely even. But I feel as if I must take this new decade upon me with as much energy and momentum as I can muster.

If I do not speed up, then the friction of the world will slow me down. My life is filled with friction. I know the pain of a chronic disease and the curse of Cassandra.

But these are motivating factors for me. I see these risks as worth taking for an interesting life. I hope my next decade is as interesting as my last. And I intend to make the choices required to bring about that outcome.

Categories
Medical

Day 985 and Know So Little

Every time I have have cause to interact with any medical speciality I find myself blown away by just how little we know.

I’ve been going back to doctors to understand what my options are for living with an autoimmune condition and having children. And the truth is we just don’t know much.

I made a life altering decision several years ago by letting a medical decision be framed to me like a consumer product. We opted to freeze eggs and embryos and it turned our entire lives inside out. It triggered an autoimmune response in me that I’ll live with forever.

Somehow in the intervening half decade years we’ve learned precious little about women’s health and fertility. And we are advocating for somehow knowing even less.

Because that’s what we’ve done by letting the government into our health decisions. Don’t kid yourself into thinking when we involve government and bureaucrats we somehow improve our knowledge and safety. At it’s most friendly, when the government shows up it’s about ass covering. At it’s most hostile it’s about control.

We argue about ethics, safety and life as if we even have a shared ideal of any of those concepts. Whose life? My life? My unknown children? I’m not convinced we ever cared about women’s health as an independent variable. We treat fertility as a sideshow and hormones as some variable over which we pretend to have control. And yet every time I try to assess my own risks I find out that we known just about nothing. There are no good answers. And it’s all poorly understood risks.

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.