Tag: Medical

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Medical

Day 836 and Medical Care & AI

I had a little bit of excitement in New York City when I encountered some type of gastrointestinal issue. We’d speculated it was food poisoning or norovirus with our doctor.

After getting it out of my system and speeding back to Montana; we’ve been pouring over the symptoms, timing, biometrics and medicines to see if we missed anything. It felt like an opportunity.

We had three doctors retire on us this year and after two years of rising premiums, we are naturally skittish about health care. Pandemic telehealth reimbursement being sunset is a hit to rural care as is the other policy roll backs as the of emergency winds down. Reciprocal licensing across all states sure seemed like it should have been a keeper. But alas American health care is a mess.

Thankfully we’ve got a doctor local to us in Montana who we’ve been slowly building up a relationship with over our first year here. After his star turn in this gastrointestinal saga, I am ready for a round of blood work and a look at the big picture with him.

We’ve even been dabbling in a few theories with our Large Language Model friends. While ChatGPT goes to a lot of trouble not to diagnose, we’ve been able to run down some leads on our own and bounce them off our doctor. I’m looking forward to getting a look at my liver panels and gallbladder. Maybe tweaking some of the pharmaceutical line up.

While it may seem a bit grim, I’m considering that with enough questions asked and enough clever inferences on our behalf from our new AI friends, maybe we can get further. Sure we are down 3 doctors and up 30% cost wise, but maybe these plucky kids can make do with a chatbot, a young doctor and a can do attitude.

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Medical

Day 834 and Inside Out

I had a really rough night last night. It’s entirely possible my original theory of industrial lettuce wasn’t the whole picture.

For a little timeline clarification. Yesterday, I woke up with stomach troubles after eating agribusiness salad chain for dinner on Wednesday. I had meetings on Thursday so I took some varied drug store tummy medicines and gutted it out. I even had a very fun time at my meetings. But then as the adrenaline of the day wained I was heading towards disaster. The nausea and had was getting worse.

I realized I couldn’t attended a dinner with some old friends but Alex was fine. I told him to pick up some Tums on the way home. As his dinner wore on my symptoms got worse and worse.

I felt like I was beach ball ready to pop. My stomach was distended so far I felt like I had back problems my stomach pushed out so far. I was tight Mike a drum. The pain and nausea consumed my focus. Around 7:30 or so I called Alex saying I needed a doctor or a visit to urgent care. I couldn’t tolerate it any longer.

Blessedly our doctor in Montana called back almost immediately. He had just personally had a case of stomach flu or norovirus himself and mentioned it was trending up nationwide. At that point I was mostly moaning and curled into a ball from the nausea and gas. He prescribed an antispasmodic called dicyclomine. It helps calm stomach cramping.

I had an hour of crying and praying waiting for it to kick in. I’m sure I scared the shit out of the other hotel guests with the moaning and crying. I was begging Alex to please fix it. To find something else I could take. To do literally anything to relieve me of this horror. Thankfully around 930pm or so it kicked in fully. How do I know?

I was able to vomit. A lot. Seven times over the course of half an hour. And then I was fine. My stomach deflated down to a normal size. The nausea abated. The pain and cramping subsided. Four hours of intense misery has passed with a drug that turned me inside out.

I spent all of Friday in bed sleeping it off. I missed all my meetings and couldn’t eat anything till dinner time came around. I’m having some soup and I suspect I’ll simply pass out. New York is an inside out kind of place sometimes and I’ll just have to live with it.

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Medical Travel

Day 833 and Industrial Romaine

I packed my day a little too full so I found myself ordering a salad from popular New York industrial salad chain Chopt at 8pm right as they closed.

The order was placed on an app so it was a crapshoot and I knew it. And sure enough I got something that wasn’t what I ordered but I’d been running around for 12 straight hours so I just said fuck it I’ll eat this weird burrito of industrial romaine and mayonnaise because I’d really rather be passed out.

Incredibly poor decision making on my part. I was up early and I was up often performing ablutions and praying to the gods of intestinal fortitude that this please pass swiftly.

I appear to have stopped with the worst of it and had about an hour or so before a meeting I really didn’t want to cancel. It’s not as if food poisoning is catching. So I groomed and put on something that would withstand the 88 degree heat of…checks notes… early April in Manhattan? And then I got on the subway.

Shockingly heat and the subway aren’t a great combination, but I was determined to gut it out. I’d left early so I could find my way to a drug store. Naturally nothing was available to purchase without someone unlocking a cabinet. Nothing more humiliating than asking if one could have a key to acquire GasEx, Tums and Imodium. A really stellar look all around.

I’m now comfortably in a lovely office of a venture capitalist hoping it all kicks in before I need to attempt socializing. Naturally I’m taking the time to write about it as I wait as it’s keeping my mind off the discomfort and misery of it all.

This isn’t the first run in I’ve had with agribusiness greens that’s gone awry for me. Many moons ago I got food poisoning from spinach I bought at a Trader Joe’s. A few blocks from where I am now. I had Gucci insurance (literally Gucci the luxury house I do not mean that it was particularly fancy) and spent the night in the emergency room. So maybe this is just a full circle experience. Ashes to ashes romaine lettuce to romaine lettuce to romaine lettuce.

I can feel the drugs kicking in and maybe I’m at the end of it. And hopefully this will just be an amusing anecdote that I recount on why we need to be more careful with food safety and industrial run off. But also I am loathe to cancel a commitment during a business trip. Showing up matters too.

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Chronic Disease Travel

Day 791 and Bathing Suits I’ve Never Worn

I’m on maybe my third or fourth trip to a warmer climate where I’ve brought a Norma Kamali bathing suit. I bought it on sale from Net-Porter as I’d always wanted one of her classic one pieces. I’ve never worn it.

For the casual reader, I have a chronic autoimmune disease called ankylosing spondylitis. It’s an inflammation condition that affects my spine and is aggravated by heat & humidity. Any temperature above above room temperature, give or take 72 depending on the humidity, starts to swell my tissues.

It’s well controlled with drugs but environmental factors can quickly spin up a bevy of symptoms including pain so debilitating I can’t walk. It’s one of the reasons we moved to Montana. I can live a semi-normal life so long as it’s cold. I spend most of my days laying flat in bed or in a zero gravity chair. My disability has become one of the super powers I use to propel my investing alpha. Because what else do you do with your time if you can’t leave bed except monitor financial indicators and chat with founders?

But back to the bathing suit. The black halter swimsuit has turned out to be entirely an aspirational garment. It’s still got the sanitary sticker for the crotch on it that says remove before wearing. I left it in and it’s become the not so subtle reminder that I may never enjoy a beach vacation again. It’s simply beyond my grasp unless I want to pay an obscenely high cost in pain and immobility.

I dutifully pack the Norma Kamali suit on each trip with a warmer climate. I’ve taken it to Miami, Texas, the Mediterranean and Mexico now. For this trip to Puerto Vallarta I packed a second bathing suit. It’s a striped bikini.

I had a fantasy that maybe I’d need a second swim suit as the other would need to dry if I swam every day. Oh what self deception we humans are capable of when it involves something we cannot have but want. I’ve never put the second suit on either. It also has the sanitary sticker still on it. It’s beginning to feel like they taunt me. Isn’t it funny that Julie still yearns to participate in the simple pleasures of life. “That dumb cunt” I imagine them murmuring as I pack.

My father loves tropical vacations. An adults only resort on a beach is his idea of a good time. And for his birthday, my brother and I very much wanted to give him what he wanted. Part of this is self protection as he often forgets to ask after other people’s preferences even if they are for something serious like a disease or disability. Better to avoid disappointment than know for sure. But also if we can give him what he wants why not make the sacrifice? It’s expensive for me energetically but I wanted to spend.

But it’s become clear I can’t make the sacrifices desired for the perfect fantasy family vacation. The bathing suit gets tossed in the suitcase with the knowledge that I can only manage one event outside each day. It’s usually a dinner or a chat.

Then I must sleep it off and work to recover. There is no space for pleasant relaxation on the beach in my body. The compressed Lycra slowly battling the expansion of my tissues as they swell overlapping with stuck lymphatic liquids would be torture. There is no joy to be found and no extra capacity to be eked out that might make the experience mimic the pleasure in a healthy body.

The fantasy is just that. A delusion I have about a life a lost and unlikely to be regained. The after effects of fertility treatments, IVF and living hard to outrun the vicissitudes of capitalism. I’ve accepted it as my lot in life. But it’s much harder to get it across to the rest of the world. And my fear that I’ll be left out and forgotten, that if I don’t fit myself into someone else’s life I’ll be abandoned. And so I rationalize that I’d be abandoned if I don’t at least try to bring the bathing suit. Even though going to the beach is a fantasy.

I hope my friends and family are able to meet me half way but I remain afraid that they don’t know how, or are unable to imagine what it’s like to live in my body. And it would be nice to be met halfway.

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Biohacking Chronic Disease

Day 790 and Siesta

I have been crashing out of my day into a sleep cycle after lunch till about 4pm while I’m in Mexico. The stress of the situation along with the heat and humidity have me needing a lot of rest.

Last time I was in a hotter climate I’d find myself crashing out into naps if I did something like eat lunch outside. I think something similar happened here. There are no air conditioned common spaces in this hotel so if I want to spend time with someone I’m outside. Sure there is shade but that doesn’t knock down anything but brightness. The heat and humidity strike anyways.

I hate this phenomenon. I don’t find it helpful to be laid flat and exhausted by two or three hours outdoors, sitting, in the shade; but it’s absolutely draining. Even if I felt like I had a full charge, which I don’t particularly, I’d be down in the red quickly.

I woke up with someone asking about dinner plans which I had offered but in truth the most I want to do is get some dinner and go back to sleep. It’s just much too draining to be outside and there aren’t many restaurants in this town with air conditioning.

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Biohacking Chronic Disease Travel

Day 789 and Types of Poverty

As you’ve probably seen articulated in thought leader tweet streams and thot-leader Medium posts, there are different kinds of millionaires. If you are young you are a time millionaire. If you are able bodied and healthy you are an energy millionaire.

I am in energy poverty. I carefully ration my attention & time and use lots of time-economic craft like asynchronous communication like emails and direct messages. Like a thrifty person with a budget I am always cutting the various coupons of time in my life to cobble together enough time to work full time so that no one can tell I’m energy poor.

It’s pretty common for folks to be in energy poverty. Maybe you are a parent. Maybe you are a care giver for an elderly parent. Maybe both. The most common is of course being disabled and requiring care. I am in that category.

I’ve turned my energy poverty into my super power. I am like Mr World monitoring feeds across the globe laying back and ingesting information & taking small minute actions to adjust my plans. I’ve adjust my career to fit this reality and find it to be an excellent fit for investing as it’s all about finding the alpha and acting on it.

I do telegraph that I’m in this situation. That my mind is sharp but my body is weak. I accept 2-3 events a week at maximum that require me to be up, about, in makeup and battle regalia (business dress) and the rest is dedicated to recovering.

I’ve never had hobbies that couldn’t be done from bed. The last time I participated in a sport was in my twenties before my latest flare. I’ve not had a social life independent from work for decades. It’s isolating and I remain perpetually afraid of losing people who aren’t in the same situation of energy poverty as I am.

Capacity can be drained further by negative conditions like heat, humidity or bright light. I am the type of disabled person that finds showering to be a huge drain so typically include those in my energy budgets as drains. Travel requires 24-48 hours of minimum recovery time which is why I tend only do month long stays places. You may have noticed I go cold places like Prague or Frankfurt and I live in Montana. That’s based on doctor recommendations.

Certain types of travel can’t be done without significant outlays of energy budget that will leave me in deficit for weeks. Beach vacations have long ago been lost but I can manage a tropical location so long as I stay entirely inside in an air conditioned room. Don’t worry laying on the beach isn’t fun for me so I’m not missing anything. Heat & salt water humidity is the fastest way for my body to begin an inflammation cycle.

I’m in Puerto Vallarta for my father’s birthday and the best I can manage is stay in my room all day and a dinner every other night. It’s a little confusing for folks who aren’t in energy poverty to fully grasp the concept but I feel no more frustrated with my situation than I would if I had financial poverty. Sometimes it’s just the situation and your budgets have hard limits. I’ll make an effort and spend 2 weeks of an energy on a long weekend for someone I love but it does cost me. Everything costs something.

Categories
Chronic Disease Travel

Day 786 and Snow Birds

I woke up at 5am this morning to begin my journey from Bozeman to Puerto Vallarta. My father’s 80th birthday celebration is taking place in the appropriately warm tropical conditions so favored by retired snow birds. And it’s his party so he gets to chose his favorite location for us to gather to celebrate him.

Both my father and I live in Montana, but he tends to prefer travel more than me by a wide margin. I travel mostly for work and family obligations. I don’t find travel to be fun or an enjoyable luxury. Vacations aren’t my thing. Especially when it involves travel to somewhere hot. I would have been happy to celebrate in the -20 in Glacier personally.

Most of dislike of travel comes down to not caring for hot weather because of how much it hurts my body. It makes my spine swell. Humidity and heat are my enemy. I live in Montana partially for health reasons as anything above about 75 kicks in some of my inflammation issues.

Add in the additional strain on the spine of sitting in uncomfortable seats for hours and I’m currently struggling mightily not to wail uncontrollably from the pain. I desperately want to lay flat to ease some of the tension that has built up from needing to hold my body still and upright in uncomfortable airplane seats. I don’t want anyone to see that I’m barely holding back tears because the pain is so bad.

Alex got tisked by the flight attendant for trying to retrieve some of medication as we’ve got one of those useless bulkhead seats. It’s a terrible choice for even a modest disability as all the things that keep me functional in my travel bag were immediately whisked into overhead compartments. We didn’t do it fast enough and the attendant hovered asking that we hurry it up.

I haven’t done short haul flights in a while as most of my travel has been flat lay seats on international overnights. I wasn’t prepared for how much sitting up in a tight domestic airline seat would hurt. All I want to do is lay flat on a bed for 24 hours after this.

I’m on an airplane packed to the gills with Lily Pulitzer knock off wearing Boomer blondes and their salmon shirt wearing deeply tanned husbands. They all seem cheerful and excited to be headed to Mexico. Snowbirds are a colorful species. An exotic and hopefully endangered species that will eventually give way to more local and regional appreciation as the next generation of travelers pursues less Jimmy Buffet stylings.

Categories
Medical Politics

Day 776 and Informed Consent

I’d really like to write about informed consent and whether it is a convenient fallacy to obfuscate the harsh reality that medicine isn’t as black and white as we have been led to believe.

It’s a complex topic so consider this my notebook of scraps and gently judge it’s content as it’s not a full cohesive argument so much as a collection of thoughts I’m working through here. If you feel you are reacting to it strongly please work through why on your own time.

I am on this topic as I am reaching a point of frustration with the discourse around transgender issues and who is responsible for informed consent. We’ve got a spiraling culture war where everyone is ignoring basic facts like children are below the age of consent and thus their parents are responsible.

Our entire legal system is based on the premise that before 18 you have not reached the age of reason and are not fully responsible for your actions. Yes it’s flawed and doesn’t always work that way and we try minors all the time but the fact remains parents are the guardians of their children.

I am oddly both well read and well cited on issues related to informed consent and substituted judgement as I was a medical ethics research assistant at the University of Chicago. I got paid $10 an hour for my troubles so you know my credentials check out (in sarcasm font). Seriously go look I’m an author on a few papers.

Making a choice to engage in almost any medical procedure is risky in ways no one, not even doctors, can fully articulate. Bodies are complicated and abiding by a simple principle like “first do no harm” turns out to be hard calculus.

Sure you can get awfully close to the right answer but you will be pretty far down the calculating differential equations path once it dawns on you that we can get infinitely close to certainty but certainly itself cannot be reached. Turns out math is useful in daily life.

Patients have a right to chose their own risk parameters. Doctors do their best to inform. But the grey area is so wide it’s practically an abyss. Add in making decisions for a minor and it’s all best guesses and other people’s facts. Believe the science means you’ve got to do your own math and it appears most people are innumerate.

I am willing to make big criticism of the transgender panic crowd because they’d prefer to pick and chose convenient narratives like “think of the children” as a defense. I’ve heard that tune before in every other moral panic. And yet it’s still not the government’s job or the doctors job to make the call. It is the parent’s call because children require the substituted judgement of their parents for informed consent.

If this is annoying or unsatisfying to you well that’s a bummer for you. I’d encourage you to read up on how we’ve scapegoated populations in the past to make sure the in-group’s priorities and social mores are sustained. Every moral panic has one. I’d recommend René Girard’s work here.

When we fixate on a vulnerable population the story is always the same. And I believe anyone who is reading this blog is smart enough to grasp that in good faith. And we’ve got a long history of scapegoating people who don’t conform to our majority population’s comforts.

The transgender issue is no different and trying to wedge it into a “but the children” argument runs up against two issues. Most of our American historical moral panics have scapegoated in this exact way. And medicine is simply not so concrete that any treatment for any condition is risk free.

Categories
Emotional Work Politics

Day 768 and Memory

I’ve not ever read Proust in its entirety, because what am I, an eternal being who exists outside of linear time? But, thanks to Wikipedia and university survey courses, I am familiar with its basic themes of memory and it’s frustrating insufficiency.

Anyways, when not pondering madeleines, I am often confronted by how resilient the mind is in protecting us from the horrors of the world. Memory is a very funny thing. As good a reason as any to maintain diaries or engage in hagiography, is that you’d be surprised at what you forget if you don’t write it down.

A doctor asked me to get a pelvic ultrasound. I surprised myself by saying absolutely not unless it’s an emergency life or death situation, I am not doing that. And she, in sincere surprise, asked me why not.

And, because I guess therapy works, I recalled a pelvic ultrasound from maybe 10-12 years ago. I’d been referred in to a specialist as there was concern about a uterine cyst. This doctor, a gentleman over 50 in the kindly white patrician archetype, who I did not know know, proceeds to tell me this won’t hurt a bit.

But it does hurt. I am screaming bloody murder. It hurts so much I cannot stop. He tells me he will call security unless I quiet down. I cannot and I am in tears hysterically trying to convey the pain to him. I pass out.

I had utterly suppressed the memory till today. It happened to coincide with my husband mentioning a think piece in New York Magazine about women who empathized with the Clare Danes character from Fleishman Is In Trouble. There is a profoundly violating scene around reproductive health and consent that culminates in dark emotional trauma.

And of course, because it’s happening to a striving insecure aspirant white bitch, it totally doesn’t count right? The internet is not sympathetic to whining Clare Danes types. Fucking Karens. It’s super cringe to consider where the system hurts you, because, you dumb bitch, you benefit more than anyone else except the men.

So I guess I am not surprised I had banished the experience of something bad happening to me at a doctors office, but you know, it was not so bad that I am allowed to complain about it. And that is how the patriarchy perpetuates itself. Shut up you are rich. Look at the skulls upon which your empire is built you witch.

What I’m saying is that maybe you need to remember who it is that benefits from you not remembering the pain. Who benefits from forgetting? And trust me they are very scared when you realize that you remember. Even the rich striving white bitches have scares from this system.

Categories
Chronic Disease Emotional Work

Day 767 and Abandonment

I called someone today with whom I have a standing appointment. They didn’t pick up at first. I called back a few minutes later when they didn’t return my call.

They picked up on the second call back. They didn’t seem entirely healthy. I found myself scared. My inner child dove immediately into a pattern of abandonment and distance as I tried to cancel and give them a way out. I blathered on about how it’s usual time and I hoped I wasn’t invading their privacy but if they were sick I could rescheduled as it was obviously no big deal.

“Julie” they said to me firmly but kindly. “Stop telling me how I am.”

I sat back on my heels at that. I hate it when people make assumptions about how I feel. Rather than listen, people will simply make assumptions about how I am and what I can or cannot do. If you hate feeling pitied then this will probably seem quite familiar to you.

It’s not uncommon for people to work through their own issues on illness, pain or disability when talking to me. While I have an invisible disability from a chronic disease called ankylosing spondylitis I do make it known that I have this diagnosis. I even treat it as a part of my edge at work. But it’s just a fact that I’m in various degrees of pain because I have swelling in my spine. It’s arthritis basically just inconveniently located.

But despite it being a public part of my identity, most people have no idea. I don’t look sick and I mostly don’t act like it in public as it’s kept under control with modern medicine. But I’ll have bad days. Or I’ll have to ask for an accommodation like sitting down.

And that’s when I learn a lot about a person’s relationship to illness. I’ll get pitied. I’ll get babied. I’ll get pep talks. I’ll get praised. I’ll get ignored. I’ll get written off. It’s never about me but entirely about the other person. It’s a little bit like seeing someone’s tell in poker. Most people have got one.

In the past I’ve let myself be invaded by these feelings from others. And it made me sad. I felt abandoned by all these people around me who couldn’t see me for me but instead saw their own feelings mirrored back to them. I felt invisible. I got treated like a cipher for disability or illness.

But underneath that little drama, an the actual person names Julie would be left alone to watch them play out their emotional theater. But I am done feeling abandoned by it. I don’t have to let anyone else tell me how I am. And it’s entirely up to others to decide if they can manage around me. I don’t need to make it my problem. I’ve got no need to abandon myself for them.