Category: Medical

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Emotional Work Medical Politics

Day 765 and Kobayashi Maru for Women

I woke up to a totally off handed tweet of mine going viral. I had done some googling on the cost of pregnancy surrogacy and learned that it would probably cost $200,000 a pop. I’d never really considered the cost as to be honest as I didn’t think I’d be having children that way. The responses to the tweet left me feeling despondent.

Five years ago I did IVF to freeze embryos (and eggs too) and it kicked off a massive health crisis that I only feel I’ve gotten under control recently. It took everything from me. I was on medical leave, I sold my startup, and my marriage got to learn what “in sickness and in health” really means. It was awful. I am crying just remembering.

It took years to get healthy again. Of course, I first had to get stable at all. I spent years, and a huge chunk of savings, biohacking my way back to a body healthy enough to work. I’m thrilled to be back doing what I love most which is working with early stage companies. But work wasn’t the only goal of getting healthy.

I’ve had a fantasy that if I just kept at my biohacking that one day I’d be off all these medications. That I could truly be healed. That all this trouble and heartache wouldn’t be permanent. That I could heal myself. Unsaid in all of that, is that I cannot be pregnant and on the medications that saved my life. How is that for a kick in the teeth.

I’ve got two embryos and ten eggs and a fleeting dying ember of hope that I could ever carry them. I don’t know if having them via a surrogate is my path forward. Maybe there is still hope I could be healthy enough. I frankly don’t know and I’m not ready to say where my fertility is headed.

All I know is that this feels like a no scenario. That having a child in America is a fraught and expensive endeavor even when everything goes right and you are healthy and young. There is no winning as a woman as any decision around family is going to upset someone.

It’s the Kobayashi Maru for American women. Juggling your partner (or partners), your money, your home, your health and your fertility means balls get dropped. You are going to lose somewhere. And it really hurts.

Categories
Emotional Work Medical

Day 762 and If It’s Not A Yes Then It’s A No

I was supposed to drive my husband to an appointment today. I’d put it on my calendar and was prepared to make sure it happened because that’s what wives do right? It was an easy and obvious yes. I didn’t think anything of it.

Around noon I noticed I was becoming intensely sound sensitive. I asked my husband if it felt really bright outside even though we had cloud cover. I felt a little bit nauseous but I’ve been taking some antibiotics so I dismissed the symptom.

It was only when some silverware clattered onto our wooden dining table I realized something was wrong. I full on screamed. I jumped and shrieked liked like a poisonous spider had just bit me. A massive overreaction to a noise that objectively was neither that loud or that threatening.

“Honey, is it possible you have a migraine?”

Alex Miller

Despite the litany of easy to diagnose symptoms, I had managed to ignore the obvious. I had a migraine. And from the looks of it a pretty severe one.

I’d woken up feeling amazing so I wanted to tackle the day with all the energy I had. But as it waned I got angry. If I’d bothered to look at the emotion I would have seen that underneath the steam of the anger was hurt. I felt betrayed by my body. I had a 95% recovery score on my Whoop. How dare it let me down? So I just ignored it.

The kicker to the story is I kept trying to ignore it. I took one Imitrax even though it seemed like a two Imitrax migraine. Alex asked me if I was sure I would be OK to still drive him this afternoon. I waffled a little bit and said I dunno I am sure it will be fine once the migraine medicine kicks in.

I don’t like to drive after taking Imitrax as it tends to make me a little sleepy. And I really wanted to help Alex by driving him. So I just took one and hoped for the best.

An hour later Alex came into the dark bedroom and said “honey you know if it’s not an immediate yes then it’s a no, right?”

Apparently I did not. I took another Imitrax and Alex found another ride. Hopefully I learned my lesson.

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Medical Startups

Day 696 and Edge

I’m enjoying a migraine this weekend that was both strong and as of yet unbeaten. Perhaps I overdid things on Thanksgiving and Black Friday. But I’ve been stuck in bed in a dark room for the last 48 hours or so.

While this sounds a bit miserable, I can assure you it is also part of my edge. When my physical works shrinks my cognitive capacity unfurls. I very much liken it to the traditional super hero dilemma of being gifted with something that makes living a normal life a challenge.

I may be stuck inside struggling with light, noise and smell but I can still do most of my core deep work. I can’t take calls or go to meetings but I can be on my phone and my Kindle. I can intake information and I can synthesize that information when I’m in darkness.

And that is 90% of my job. Be informed and make the best decision you can. Those decisions are generally done when you are calm and fast. And I get the benefit of being in rest and digest as often as possible as it’s what keeps me alive.

I’ve got a generalized theory related to finding one’s edge. It’s pretty simple. If other people perceive it as a weakness but you understand how to wield it as a strength then your got an edge. People dismiss you sure. But being underestimated is one hell of a way to get on the better end of a trade.

And so while I’m here looking like I might not be worthy because of some set of heuristics that’s have typically worked well for you I’m actually the one that has a leg up on you. You would do well to think about all the ways in which you can leverage talent and insights that trade below their value. You can make a lot of money betting off of truly underestimated viewpoints.

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Medical Politics

Day 656 and Genetic Material Storage

What feels like a lifetime ago, my husband and I pursued fertility treatments. I didn’t have any known issues but we wanted to freeze eggs and embryos while I was still young. At the time we didn’t feel stable or wealthy enough to predict when having children would be feasible. It seemed like the responsible choice to have a backup plan. Everyone we knew was doing it too.

I remember a gynecologist telling me off for considering freezing eggs as she managed medical school with a toddler so surely an easier career like startup CEO would have no trouble with resources for becoming a mother. I never saw her again after that incident. But knowing me the shame I felt from her judgement simply cemented my decision to free my eggs.

But I was equally poorly served by the fancy fertility clinic that glossed over risks and side effects. In hindsight I wish I’d been more concerned about ramifications. I also which I’d listened to my gut which was screaming that this felt more like a luxury shopping experience than a major life decision. The ease with which I was being sold a life where I could buy an insurance policy about a decision that I was ambivalent is almost shocking.

Now I’m faced with another choice. The genetic material needs to be moved to a safe state. In the wake of Roe v Wade being overturned, there is concern that fertilized eggs (embryos) might not be fully under our control as red states pursue stricter and stricter control policies. No one is quite sure how embryos will be treated. And frankly no one wants to find out.

Embryos that were stored in states like Texas and Florida are on the move. Clinics and storage facilities cannot guarantee their safety and usage as too much is still uncertain. Of the storage options we have, only two are in safe states unlikely to be impacted. Minnesota and Connecticut.

We picked Connecticut. Even if Republicans take it over we are banking they will be of the WASPy moderate types who see value in family planning for nice white married couples. Our privilege is at maximum there and that’s worth a premium.

I am so conflicted on even addressing the issue of what we are supposed to do with our generic material. Is this the moment we give up and admit it’s not a life path that we want? The chances of Alex and I have children together are getting slimmer. It’s not impossible but it’s also not looking likely.

My health is stable but I use several pharmaceuticals that shouldn’t be used during a pregnancy. I’d need to be on bed rest and dosed off everything to proceed with a pregnancy. I’ve been warned I could lose my progress on controlling my autoimmune disorder, the worst case scenario is I’d have to repeat the last four years of stabilizing treatment. I would be in a lot pain that couldn’t be treated for the duration.

Needless to say I’d not be able to work during the pregnancy and possibly for an extended time after. It feels perilously close to a choice between living my life and organizing my entire life and healthcare for a child I don’t even know if I want. It might be a permanent off ramp from work as the recovery would be significant. Everyone says you will regret not having children but I’ve only ever met people who regret having children.

At which point I have to admit to myself I don’t want children so badly that I am willing to be physically debilitated for another five years. I am so excited to be living a semi-normal life where I can pursue my personal and professional goals. The last few were hard. Perhaps we could pursue surrogacy but that suggests a level of wanting children that I just don’t think either Alex or I have. Because neither one of us strongly desires children this additional effort and cost simply to preserve our own genetic material isn’t under consideration. If later on in life we find our preferences changed we are both comfortable adopting or raising children not related to us genetically.

Perhaps the problem was that we never strongly wanted children in the first place. Maybe that shitty gynecologist was right. If we’d wanted kids we would have found a way. Instead we bought an insurance policy. And now that insurance policy is a scary liability with an uncertain political future.

With the way America is headed if we don’t move the embryos to a safe state now it’s entirely possible the government will decide we actually already have children. Unborn children. Who might have more right to life than I do. To be honest that’s an ethical question I don’t have an answer to. All I know is that I am absolutely not willing to let the government decide if it is my life or the embryos. That’s between Alex, myself and God.

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Medical Preparedness

Day 630 and Sympathetic Nervous Response

One of the downsides of having any kind of medical bullshit is having to keep an eye on yourself. If you over do shit you’ve got no one to blame but yourself.

I’ve been doing a wilderness medical incident first responder course this week. I initially went into it slightly concerned with my ability to physically keep up given my ankylosis. I was easily the odd duck out in a group of former military folks, paramedics and wild land firefighters. If I’m honest I didn’t want to embarrass myself by showing too much frailty. I was already the only woman in the class. I didn’t need to be the cripple on top of that.

But over four days I’ve managed just fine. I did wound packing and splints. I did a number of incident scenario responses ranging from anaphylactic shock to heart attacks. I even did multiple mass casualty response drills. Today I managed one as a triage incident deputy and comported myself quite well.

I was feeling pretty cocky about how well I’d managed through the week. I was enjoying that sense of accomplishment right up until 5pm or so today when we had our last assignment of the day. We’d just finished up a drill with five patients who had been caught in a tornado. It was an hour of field work and triage outside. I was thinking alright maybe I’m getting the hang of thing. But no I was about to embarrass myself on one of the easiest tasks in the course.

It was time to pack up our own medical kits. We got a big baggie with all the supplies we could possibly need for our our first aid kits and dumped it out on the desk. Our instructor began going over all the items and how to pack them up into the bright orange brick that serves as your kit bag. I was doing my best to follow along but my brain was just not having it. I kept trying to figure out what items went where and how it was meant to go. And I was not remotely keeping up with the class or the instructions.

I’m starting to feel overheated and I’m struggling to concentrate. And it’s then I realize “oh shit I’m in a bunch of pain” and I realize I haven’t taken my pain medication for hours and it is starting to show. I just ran around in a big field doing triage for an hour. So I think to myself well I’m having a sympathetic nervous system spazz out. The pain and fatigue is sending me into fight or flight and I’m losing decent coordination and fine motor skills. I am becoming one of my own patients.

I didn’t finish packing out my kit. I had to excuse myself. I briefly considered if it would be funny to have a medical incident in a first responder course. But I was fully capable of treating my own acute stress response. I was getting worked up by an inflammatory response from my ankylosis and low and behold the pain in my spine was going to spike.

The end of the story is that I’m in bed and the non-steroidal anti-inflammatory drugs have kicked in. My pulse and respiration are fine. I’m no longer in fight or flight. And yes I’m a little embarrassed that packing a bag is what did me in. But on the other hand, that’s a very “Julie” way to learn a lesson.

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Medical Preparedness

Day 629 and Working in Chaos

If you have been following along for the past couple of days you may have noticed I’m at a wilderness medical first responder course. I’ve been soaking up an inordinate amount of information. Part of the reason I am here is personal enrichment, but equally I am here because I’m working to understand chaos driven industries and the opportunities they present.

And the class is not disappointing. As we’ve have absorbed more skills and are moving further into the course, the chaos factor is being ramped up. The particularly enjoyable aspect of the specific course I am doing is that it is not just imparting book smarts. It’s designed to be much more hands on.

If it were a business school class they would probably refer to the methodology as case studies. But instead of ruminating on what you would do if you were management you are reacting as if you were the actual first responder on the scene. And the cases are getting more and more complex.

We started out with with the basics. We were deducing issues and imparting stabilizing treatments. But as we got more comfortable with figuring diagnostics and rendering basic aid the complexity ranked up. At the end of the day today we were presented with a car accident and four patients.

As we ran (literally) onto the scene we had to not only unravel what had happened but also treat several patients in varying degrees of distress. One of our patients didn’t make it. There was nothing we could have done. But we didn’t know that going into the scene. When we arrived we had no idea what happened and had to untangle the triage ourselves.

I was surprised at how challenging it was to leap into action. As the chaos of the accident presented itself our group of first responders had to decide on organizing ourselves and our resources. But the instinct is to simply begin rendering aid.

And that tension between acting and organizing in a crisis never goes away. You just get better trained at how to approach it. Working in the chaos is the job. I honestly thought I’d be better at it. Taking charge and working in uncertainty is something I enjoy. But as with any new skill, it takes work and practice. A certain amount of pressure is the only thing that teaches you how to work in chaos. And I’ve still got a long way to go.

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Medical Preparedness

Day 627 and First Responder

My hands are stained blood red. Despite a good scrubbing, my cuticles definitely show that I spent time packing wounds today. Ok, fake wounds. And it’s fake blood. I am taking a wilderness medical incident certification course. And it is very hands on. Literally.

A firefighter packing compressed gauze into a femoral artery simulator

I got the opportunity to take a spot in a course that one of my friends teaches. I’ve got so much exposure to medicine after the last several years of health challenges that I’ve been yearning to upgrade my knowledge to something more practical than my own personal biohacking. So when Tom offered up a spot in his medical incident certification course for wilderness response, I said you know what fuck it I’m going to do it.

And I’m so glad I did. Not because I anticipate needing to apply a tourniquet in the back country of Montana. Or that I’ll be faced with packing a groin wound to stop someone from bleeding out when they are hours away from the hospital. Though I am glad I now know how. But because I think hands on experience with a rougher world is experience I need to do my job investing in an increasingly complex, chaotic and unstable world.

I was absolutely enthralled by the first day. It was me and a bunch of other much more experienced EMTs, paramedics and wildfire fighters. I also met a number of extremely savvy folks who special in fire and emergency incident response.

I was very much thrown into the deep end of first responder world and I’m not ashamed to say I “died” on the very first scenario test as I’ve got no idea what I’m doing. But I’m soaking up as much information as I can as fast as I can. Though not quite as fast as arterial blood gushes. Yet. Ask me on Friday if I’ve improved.

I couldn’t tell you precisely why I think this kind of hands on exposure to emergency response is so crucial but something deep in my gut says that I cannot possibly invest in a changing world without having some on the ground exposure.

The folks who are fighting our worst wildfires and responding to our most intense natural disasters know something visceral about chaos and the fragility of modernity that the rest of us do a lot to suppress.

Just casual conversations as we went through lessons and practice opened up my mind to new areas of opportunity. I found half a dozen blind spots I didn’t know I had. The world is much more chaotic than the media and our social channels let on. But it’s also possible to tackle them head on. We are not helpless. And it’s not hopeless. And I’m feeling fully empowered to deepen my relationship to chaos as I learn just when and where I have more agency.

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Medical

Day 625 and Shitty Day

I had a shitty day today. Not as in I had a bad day. Although it wasn’t great. I literally had a shitty day. I’m on a combination of medications that just do not agree with my gastrointestinal tract.

I am supposed to avoid fatty foods and also somewhat inexplicably dairy. One of the antibiotics I am on says do not take within an hour of any dairy product or something with a lot of iron.

Maybe it was the croissant. Perhaps it has too much butter. Maybe it was the splash of milk in my coffee. Or more likely maybe getting Chipotle for dinner last night sealed my fate.

Either way I spent the day getting close with porcelain. A lot of time was spent over heated and miserable on nice cool bathroom tiles. I prayed for it to let up but I had maybe six hours of misery

My tongue feels so dry it’s got the texture of a kitchen sponge. I am trying to rehydrate myself but I am still modestly afraid to do more than a few sips of a rehydration solution. What I wouldn’t give for an IV bag of saline salts and Zofran. But since I don’t I’m just going to curl myself around a coconut water and my rehydration fluids and tap out for the day.

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Medical

Day 568 and Upset Applecart

I’ve been in a bit of a mad dash to get in last doctor visits with people on my treatment team that are in Colorado. Bozeman being a much smaller city than Boulder or Denver isn’t rich in specialists.

Of course, a hammer sees a nail. So on my last visit to my primary supervising physician in Denver, he just has to prescribe some new shit. He’s a bit anxious about doing some things remotely so we jumped into a new treatment I’ll start in September and a course of antibiotics I started on last night for an infection.

I’m basically stable but I had some symptom flares recently with all of the travel and heat. So getting put on a new antibiotic to sooth my immune system, which is both reactive as fuck and suppressed by biologics seemed sensible. I had some infections that weren’t clearing because of the suppression and there is no sense treating deeper stuff with that going on.

But alas last night at around 1am I realized we may have upset the apple cart a bit with the antibiotic. Only modestly so, and perhaps worth it if the clean up gets rid of any bad apples spoiling the whole bunch. I can feel certain symptoms improving even as I am indignant about the side effects from the medication.

But I’ll be damned if this antibiotic doesn’t have some side effects I dislike. It makes me both woozy and a bit amped up. Which is a shitty feeling. It was clearly a bad idea to take at night but my doctor wanted me to have my first dose as soon as possible. I was absolutely Tweeting late into the night being the central nervous system effects.

It often feels as if there is always something new and stupid wrecking my body in the summers. And there is little choice but to upset the damn apple cart to deal with it. I know it is necessary and I’m lucky to have the help. But I think I’m entitled to dislike it just a little bit.

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Medical

Day 567 and Seasonal Affective Disorder

One of my Twitter mutuals blew my mind yesterday.

I’ve always been a dick to my SAD friends, but heatwave depression is right here, sitting on my lap.

Brent Cox

I’ve got a few friends with SAD or seasonal affective disorder. I had always thought of SAD as a winter disease. Lack of sunlight messes with your circadian rhythm and it can lead to depression (among other other physical symptoms) during shorter colder months. I’ve never had it personally. I thrive in the winter. Maybe it’s generics as my ancestry is Scandinavian.

It never occurred to me that there could be an inversion variant of seasonal affect disorder for the summer. But apparently SSAD exists. People can get summer season affective disorder. It’s rarer but it exists.

“What causes summer SAD? We assume it’s heat and humidity.”

New York Times

Which frankly makes total sense. It’s a fucking misery most of summer. Heat makes my pain worse. I’d assumed any dislike of summer was related to the increase in severity of my symptoms. But maybe it’s a more holistic issue.

Another seasonal challenge that could worsen with climate change — and play into mood — is pollen, said Teodor Postolache, a professor of psychiatry at the University of Maryland School of Medicine. He said the immune response to allergens like pollen might create a cascade of changes in the body, including the release of biological compounds called cytokines that regulate inflammation and have been connected to depression.

I don’t think I am necessarily depressed in the summer but my mood is generally rotten. And if it’s from heat or pollen or humidity, the end result does seem to be I’ve got increased inflammation during the summer months and it’s uncomfortable as hell. I don’t know what I’ll do with this information (other than ask my doctor at my next visit) but it’s nice to know that I’m not crazy for feeling crazy in the summer.