Tag: Medical

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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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Community

Day 639 and Act Local

I grew up in a hippie college town that was fond of bumper sticker activism. Showing off your sense of humor and your political priorities was a fun thing to do with your Subaru Outback in the late nineties and early aughts before Facebook and the rise of social media.

A classic of the genre was “Think Global, Act Local.” I found this example on Etsy. And no I’ve got no idea what charity it ties back into.

Think Globally, Act Locally Bumpersticker

Maybe it was just less cringe to have this sort of thing on your car before we all spent half of our days yelling at strangers on the internet. I personally remember thinking Visualize Whirled Peas (a band from Austin) was a hilarious way to protest American war mongering as a teen. Of course, I still wrote Amnesty International letters at the time.

Now I’m not even sure who to donate money to at the end of the year as institutional trust continues to break down. Thinking globally is often the source of much anxiety. Currency collapses and the threat of nuclear war from Russia might be throw backs, but doomscrolling and feeling helpless is too modern. What is old is new again but in more potent anxiety inducing form.

So it was a bit of a relief to enjoy the “act locally” part of the classic bumper sticker this morning. Our local volunteer fire department had a pancake breakfast. Now as an adult my husband and I live outside of a completely different college town in the wider surrounding Gallatin Valley.

The rural (as opposed to city) county fire departments operate with a lot of local good will. They have a professionally trained but all volunteer force and cooperate with other districts through mutual aid frameworks. Practically, that meant a lot of college students taking advantage of living at the fire station to offset their costs while deepening ties to the community. A pretty ideal set up for a tight knit rural community. We get talent and they get skills and housing during their college years.

But calling them volunteers makes it sound less professionally run than the reality. I was impressed with not only the depth of knowledge of the entire department but also just how well maintained all of the equipment clearly was. Sure they probably cleaned stuff before letting their neighbors come in for a visit but everything was so shiny and new. I came away feeling a lot more secure about making a 911 call.

Now maybe that’s just function of meeting the fire chief and chatting with EMTS. And that’s probably exactly why they host these pancake breakfasts. But after two hours of touring equipment, and talking to everyone from the Medivac helicopter pilot to the youngest college kid on the squad, I felt like this was a team that has its shit together.

Now I’m actually excited to vote for a bond issue to get another fire truck or two! But in the meantime we dropped a few twenties into the boot on the table.

Pancakes and a fire boot for donations to the county fire department.

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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.

Categories
Chronic Disease Politics

Day 618 and Personal Politics

I hesitate to share too much detail about this but, I’m an opioid user.

Actually I’m not hesitant to share that at all, it’s in fact the core salient point I want to make today. I have a chronic disease and sometimes, blessedly more and more infrequently, it can only be effectively treated with pain medication.

Why am I talking about this? And in public no less? Because unless powerful people that have a degree of social, personal and political capital discuss things we deem unsavory we never make any damn progress on humanizing our inhumane responses. And our response to the opioid epidemic is inhumane.

The backlash to the crisis, a mash up of intense scrutiny, government intervention and rigid rules, has now reached a point where it is doing as much harm as the original crisis of overprescribing. And I hope my personal story allows you to see why.

My spinal condition (ankylosing spondylitis) can be so debilitating that the only way I can get out of bed to accomplish basic tasks is by taking a mild opioid called Tramadol. It’s not in the same category as OxyContin or Percocet but it’s not risk free either.

I’m lucky that my condition is relatively well controlled. I don’t need pain medicine all the time and I work very hard on alternative treatments in the hopes that I won’t need it at all in the future. I spent a small fortune making sure I don’t need a core useful medicine. Let that sink in.

I’m not an addict. I am monitored by a team of professionals. Every step of the way is in fact monitored extensively by state and federal systems along with massive insurance and hospital system oversight. It’s the closest I’ve come to experiencing the Panopticon. It’s life altering in its scope. My entire life by necessity has to revolve around when the system deems it safe for me to get a prescription. Not when my doctor thinks I need it. When Uncle Sam does.

I fucking hate relying on something so dangerous and so demonized but also so regulated. I hate that my entire private medical life is so closely monitored by the state. I hate all of it. But, on very bad days, the choice is immobilization or Tramadol. And I’m not at all ashamed to say I pick Tramadol. I want to be a working productive member of society and that’s hard to do when you are unable to move from the pain.

There is no grace in suffering but what it teaches us. And I’ve learned we use pain as a cudgel to control people in our society. That it is so effective is why I am both a libertarian and fiercely against the carceral state. One day it might be you suffering and you won’t deserve it either. And I pray that you will be shown grace in your personal circumstances.

But I’m lucky. I’ve got other pharmaceuticals, like biologic injections which treat inflammatory conditions, that I can rely on. I’ve got THC and CBD for their anti-inflammatory properties. I’ve got good old fashioned steroids like Prednisone. Which interestingly, my physicians universally believe is more dangerous than my Tramadol usage and did actually require an extended titration down as I was physically dependent on it, as your body stops producing the necessary hormones. They’d rather I use Tramadol for flares.

But you notice the government isn’t up in your face with a massive publicity campaign showing cops busting down Prednisone rings. There are no political advertisements showing how an opponent supports big steroid. Even though if you saw Donald Trump after he got Dexamethasone during his fight with Covid it was pretty clear he felt pretty good. Steroids have gotten me far more fucked up and also higher than any opioid ever has. But no massive surveillance program has ever come down on anyone for anti-inflammatory drugs.

Because that would be fucking ridiculous even though it’s just as addictive in driving physical dependencies , just as debilitating and depending on your body chemistry, just as “fun” as narcotics. Fun fact about me, I don’t have whatever chemical makeup that allows an opioid to give me a high. Which as I’ve learned is a saving grace. Not everyone does. That’s kind of the rub. The risk profile on opioids is a bit worse because some pharmaceutical executives lied about the percentages of people who get addicted. Or who found it’s side effects pleasurable in the absence of symptoms. They did not lie about the benefit of not being in pain.

And that ought to give you a good sense of the problem at hand. The iron law of prohibition strikes again. A massive bureaucracy imposing a fix that intervened in crude and inflexible ways is causing more suffering than it fixes. It wasn’t the intent but it is the outcome.

The iron law of prohibition is a term coined by Richard Cowan in 1986 which posits that as law enforcement becomes more intense, the potency of prohibited substances increases. Cowan put it this way: “the harder the enforcement, the harder the drugs.”

Because doctors were lied to about the risk profile of certain types of opioids in the first place, the backlash is now as bad as the original sin the pharmaceutical companies committed.

Regular law abiding people are getting fucked in their treatment plans because hard enforcement is making it harder to get the low dose drugs. We treat Tramadol users with arthritis with the same tools as as criminals addicted to illegal fentanyl. I know shocker that the American federal government can be as evil as Purdue.

But also historically you know it’s true. And now a huge portion of normal people like me, who just want the benefits of not being in constant pain, are being turned into an over surveilled over controlled population. And I’m not saying there are no risks. But who do you want deciding that? A doctor who knows you well? Or the government? Yeah I’d pick the doctor too.

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Emotional Work Preparedness

Day 613 and Timing

It’s hard to look straight on at your desires. Why is it that some of your life arises from your priorities and focus, but others are just chances and circumstances?

The hardest part about looking face first at being responsible for yourself is that you are both in total control and not in any control. We want to live with willpower. We want to be people of purpose. And yet life is happy to show us how much it’s all just dumb fucking luck.

Because we are what we make time for in our lives. And if we don’t make honest time for ourselves how the fuck will we ever know what we actually want. If you let life idle past you that’s fine. Because that is the path of fulfillment all along. And in letting ourselves just be maybe we find entirely new reservoirs of resources.

I’m considering taking a wilderness first responder course. I’ve got other priorities for the fall but I also made a commitment to a resilient rural life. Somewhere in my own desires I may find that what I want can and does align with the rest of my life. That by opening up to something new I also see who I am more clearly. I believe they call it getting perspective.

Categories
Politics

Day 594 and Feminine Mystique

I spent my morning desperately trying to distract myself from the pain of menstrual cramps. It’s my first period being without the luxury of living on a city sewer and I am modestly grossed out by having to roll up my tampons in toilet paper and toss them in a tiny trash can.

If you haven’t had your own private septic system, well here is a lesson in rural living. You can’t be putting big globs of cotton into them. Technically you shouldn’t be flushing tampons into any kind of plumbing anywhere. But who amongst us hasn’t done so. Flushable wipes are a lie that big butt wipe has put a lot of marketing dollars into.

Were you uncomfortable reading that? I bet you were. The indignities of embodied life are plentiful but we especially dislike hearing about women and their reproductive system. Don’t trust an animal that can bleed for three days and not die amirite?! Something super mundane that is the reality for half the planet is treated as incredibly foreign and disgusting. I totally love how it makes me feel like a monster just for being human.

I am feeling this particularly acutely because the discourse around women and their rights is at a nasty place in America. We are barely a month out from Roe v Wade being overturned in America and the horror stories are pouring in. The curtain has been pulled back to reveal some unattractive realities.

And I’m not even talking about just abortion. A whole slew of reactionary positions are being floated by the Moldbug crowd and spun up into adjacent meme spaces by feral readers of Bronze Age Pervert. They are happily chatting away about the failures of liberalism and chief amongst them is women’s right to vote. It’s not at all shocking to hear open discussion about how the franchise should only be open to land owning heads of family. So naturally sorry women. It just follows.

I’m getting a lot of pushback from more progressive men (and by that I mean anyone who thinks women voting isn’t up for debate) on my feeds absolutely confident this isn’t happening. No one could possibly believe this they assure me. It seems so shocking to them. But I’m here to stare back into your soul and say “honey please.” It’s all up for debate when people are hungry and angry.

But since you need convincing. I’m telling you that regular people with normalcy bias have already decided I have less bodily autonomy than you. What makes you think these reactionaries have any respect for my franchise if you didn’t even notice the right to chose mattered.

It’s offensive to say this as women have never had more rights but also I’m still a second class citizen. And I’m a white married lady so I know how fragile my perch is and how very high in this delicate dénouement of the battle of the sexes. Progress is fragile. Branches can snap.

Categories
Emotional Work

Day 589 and Mental Health

Trigger warning: discussing depression and oblique references to suicidal depression. If you are in crisis please call 988.

I had a scare this morning. Someone I love is going through some stuff. I didn’t know if they were safe for a short period and I found myself frightened by the prospect of losing them.

When I learned they were safe I was relieved but also angry because how dare they scare all of us like that? I scrambled to cope with my own feelings and a desire to engage in codependent behaviors. I called my therapist and pulled myself together.

While I don’t suffer from depression it’s not an entirely foreign concept to me. It has felt closer over the pandemic as I’ve seen others struggle. I have family members and friends who live with varying degrees of chronic depression and I have witnessed first hand how much strength it takes live with it. I have chronic pain and I don’t think it is even in the same ballpark of debilitating as depression.

I’m not any kind of expert and my advice is mostly me talking into the wind so please only take what serves you. But what I’ve learned is that people genuinely do care about mental health if you want to seek a connection. We want to help. We want to help those that want to help themselves. Your people do love you and you may have more of them than you realize.

Sometimes it feels impossible to ask for help. Maybe you cannot ask friends or family because of any number of reasons. But that doesn’t mean you are alone or no one is here to help. There are hotlines. There are 12 step meetings. There are apps and services. As one internet friendly to another you are not alone. If you need mental health care please take whatever step feels feasible even if it’s just a text message into the either. You can do it.