Categories
Biohacking Chronic Disease

Day 668 and Health Multitasking

I didn’t take my own advice recently. When folks ask me how to begin biohacking I tell them to take it slow. You should change only one variable at a time.

Biohacking requires that you don’t change up your variables too often or too quickly. You need to establish trend lines. The biggest mistake you can make is being “noisy” as you will never isolate the meaningful variables. And you won’t stick to it. So it’s a double fuck up. Clean reliable data matters. Don’t change too much too fast.

Day 91 and A Beginner’s Guide to Biohacking

My biohacking has been focused on improving my core inflammatory markers for several years. Secondary metrics like pain and energy got better as my erythrocyte sedimentation rate and C-reactive protein went down.

What I did to improve those metrics was complex, time intensive and expensive but it was pretty clear what outcome I was pursuing. My broad goals were simple. The tactics merely a function of one overarching strategy to lower inflammation.

Recently I’ve been a bit sloppy about my goals as my SED rate and CRP approach normal. I got excited that I might be stable enough to pursue some new goals. I am always looking to lower my doses of pain management medications. But the real shiny object for me has been fat loss.

I’ve struggled to stay lean as several medications that improve inflammatory markers have weight gain as a side effect. I struggle with shame about my weight. So much of popular culture portrays weight gain as a function of poor impulse control. It embarrasses me on some deep core level that others might think I’m lazy. If immediately trigger’s defensiveness for me.

I can rationally know I was pursuing a responsible health by taking prednisone during acute phases of my illness, but a part of me is still so embarrassed by the side effects. What must people think of me? Even if I explain that it’s a side effect of medication I fear that it’s still perceived as been slovenly.

So I decided to go back on metabolic drug called ozempic because I just hate carrying excess fat. I thought I could add it into my routine. But I am not doing as well as I’d like with the side effects of the injection. I’ve now vomited two Sundays in a row and been unable to eat. That is destabilizing enough that it is impacting my other goals like a slow dose down of non-steroidal anti-inflammatory drugs.

Maintaining low inflammation rates with lower pharmaceutical intervention is obviously a huge goal of mine and far more crucial than dropping a few pounds of fat. Especially because my metabolic markers are all in the clear.

I just so badly want to put behind some of the visible markers of my disease. It was hubris to pursue ozempic when I know I have other metrics that are more important than my shame about having steroid fat. So next time you see someone who is overweight I encourage some empathy. You never know the whole story of someone’s health.

Categories
Politics

Day 664 and Political Disabilty

I did not watch the Pennsylvania senatorial candidate debate between Democratic Lt. Governor John Fetterman and Republican tv personality Dr. Mehmet Oz because I live in Montana. Why the fuck would I do that? But I have caught the discourse surrounding it and I do not like it.

If you are not following this saga, Fetterman had a stroke a few days before the primary in May. He is recovering but but is still having trouble with speech. People who are not familiar with neurological recovery processes (otherwise known as 99% of normal humans including me) are freaking the fuck out about what it means that his speech is impaired. It looks particularly egregious when compared to Dr Oz who is professionally competent at communicating clearly on television because that is his job.

Naturally we are seeing the absolute worst possible response to Fetterman’s current disability from just about everyone. Supporters of Fetterman are insisting that there is no evidence of mental degeneration or acuity issues. Which might be true but I don’t know. But the general sense I get from supporters is one cannot even suggest that there might be processing issues because doing so would you an awful ableist human being. Neat!

On the flip side, Republicans and other opponents are insisting Fetterman isn’t fit to hold office as he is not capable of speaking clearly. The Republican position seems to be that a speech impediment is a clear sign of mental decay and electing him is maybe a diverity and inclusion policy so wrong it should insult us all. Also extremely neat!

I’d say naturally both positions are ridiculous but I’m not sure this is natural to anyone. Ableism, or discrimination against the disabled, is an exciting new front in the culture wars. Being being disabled is a hot new identity marker despite the fact that a quarter of Americans have some form of disability. It’s not that unique or cool to be disabled. But modern medicine is a miracle so we can’t rely on Darwin anymore to keep us damned cripples out of sight anymore making light eugenics kind of a popular position. I don’t love it.

I am someone with a modest disability. I have a spinal condition called ankylosing spondylitis which is basically arthritis in my spine. So I don’t find any of the commentary surrounding Fetterman’s disability status encouraging. I don’t love that the basic assumption is being less than abled bodied is disqualifying for work. It depends! This shouldn’t be a whole fucking thing.

A disability doesn’t mean you can’t work like a “normal” person but it does mean you have some limitations to work around. This doesn’t make you better or worse as a person. Being disabled has no moral valence. Alas we tend to valorize suffering and demonize perceived weakness. Neat!

My position is most disabilities are sort of a modest inconvenience that on balance forces you to hone other abilities to be competitive. This is my super hero theory of disability and might be a contributing factor to the side that valorizes disability. How cool is it to be an X-Men? Extremely! But I don’t overweight this position as I largely think a market economy fixes by forcing us to all to compete and find our niche.

If this is scandalous to you, I’d say everyone has something that is a struggle to overcome even if most people’s thing is just being kind of an idiot. Half of us are by definition below average. But imagine if I thought you being stupider than me was disqualifying for holding political office.

My whole point in this long ramble is that the Democrats are being ridiculous in insisting we cannot look at the strengths and weaknesses that come with bodies being sick. We are on year three of the pandemic so that ship has sailed. The Republicans are being ridiculous insisting that speech impediments are disqualifying. Tump didn’t even have the benefit of a stroke to blame for his speech patterns.

It isn’t ridiculous to ask someone to be transparent about recovery and abilities. I’ve got no idea if Fetterman has slower thinking after the strike or if it’s just slower speaking. I don’t really care to be honest. Not my senator.

But if we all keep insisting on physical and mental perfection from our elected officials we might not have any politicians left. Which actually on second thought might be ok.

Categories
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.

Categories
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.

Categories
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.

Categories
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.

Categories
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.

Categories
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.

Categories
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.