My New Cross Fit Workout

And then I started Cross Fit puking. Fun.

Oh, and then I had a massive nose bleed. Which I know isn't exciting or all that relevant, but I don't usually have those and it took an hour to stop so for me personally it was a record breaking event. I assume my entire body contracting for hours on end was a bit too much stress on things.

Man. I am wiped. Such a wonderful quality of life I've got going... Spewing internal fluids everywhere. Growing lumps. Joints falling apart. Covid. Yeesh.

Anyway, working on recovering now. (Which, note I'm still feeling a little 'head has detached from my body and is floating in outer space' so this post might be interesting.)

As for why...who knows? Maybe it's the MRI contrast or the allergy to the contrast or maybe food poisoning or a bug. I don't know. All I can say is no one else is sick so far, so it's probably my own internal fuckery. As usual.

BUT the MRI came back good. Everything is stable. Both liver and pancreas. Thank goodness.

If memory serves, I have to do one more next year to babysit the IPMN and then they stop caring? I think that's right. I mean, they'll want to keep going with the liver, but I'm going to try and go every other year after I finish babysitting the pancreas. I'm tired of this. I want less of it.

That said, I have imaging set up for yet another thing. Sigh. Just an ultrasound though. Which, while I'm happy for a low stress imaging method, I hope it's enough. I have a grapefruit size bulge in my lower stomach* that I noticed a few months ago, and in my body, you can't let that stuff slide, you have to look at it.

And I'm supposed to have a breast MRI but I'm not even sure I'll get to it this year. Both on their end of logistics and mine. (I'll have a mammogram though.)

I'm beginning to wonder if my body will outpace the logistics and capacity available to care for it. I can only go to so many doctor appointments. Time is finite here. I only have so much stamina and bandwidth and other responsibilities and obligations. That capacity is pretty fixed.

Right now I'm trying to push all medical stuff I can out into the fall. I want the summer off (as much as I can finagle). I want to work and go have a good time, enjoy the summer. (I'm super stupid excited about swimming, about hopefully having my mobility back after this foot surgery.) Our recent trip didn't fix my health, I still had issues, but it was so much more fun to have health issues and do interesting things anyway vs. going to the doctor all the time. 

My life is out of balance. 

My current fantasy involves medical tourism to do whole body MRIs and PET scans so I can JUST BE DONE and KNOW WHAT'S IN THERE without the gauntlet of fifty billion appointments. Can you imagine? Instant road map. No more appointment appointment appointment appointment appointment. I could problem solve from actual findings instead of guessing. No stuff there? Then I don't care if you hurt or malfunction. Fuck off.  Yes, tumor or arthritis or whatever in places with symptoms? Okay, you get a doctor.

This is part of what I was hoping genetics would help with--finding that unifying diagnosis to maybe achieve some degree of efficiency in my care. I'm not happy with how they refused to keep testing. Anymore all my specialists bring up genetics now. All. Of. Them. But actual genetics gave up trying to find a pattern. 

Although, that said, medicine is so fucking inefficient with multi specialty stuff, I don't even know if an umbrella diagnosis would help me. There are too many tumors in too many places. I need a rare/chronic disease primary care something. I need a go-to person who helps me sort through the noise without a billion specialist appointments. Who helps me push the system into making one MRI do many things (which I don't think this is even a thing in medicine, but it could be).

Hell, just a basic program for the 'medically complex' that facilitates things like making all my follow up appointments for one day would be amazing. If I could concentrate 4 or 6 appointments into one day, that'd be a huge improvement. This endless drip of appointments is killing me.

But what I need doesn't exist. There is no efficiency for patients. There is only efficiency for profits.

If I want less doctor time, it's on me to engineer it. But that comes with the risk that something will be left unattended too long. I don't know where the line is and medicine is zero help with that. There's no math I can rely on. I'm on my own. 

And you know, you don't want to hurt yourself, but when you can't easily tell what the actual risk is...it's a lot to navigate. If you screw it up, you'll hate yourself. If you over do it, you'll hate yourself. You get regrets on either side of the line. But where even is the line? Where's the balance? I have no fucking clue. 

Medical tourism sounds like balance to me right now. Working off actual data is highly attractive to me. Let's find the unknowns and make them known. Let's go fast instead of slow. Stop acting like my time has no value, that it's okay for medicine to completely take over my life. Optimize this shit.

I am actually working on getting new passports for everyone in order to visit family before they pass so...hmm. Maybe I'll pull something off along those lines. 

(But caveat, having data from outside the authorized process flow doesn't mean doctors will accept it and I imagine skipping over all the time suck diagnostic work flows could cause some insurance approval issues, so it's not a clean win I don't think.)

*Way to bury the lede, right? But frankly, I've reached the point of so what on this stuff. If I lost my shit every time something was weird, I'd die of stress. My body grows things. Lots of things. Mostly they're benign in the absolutely most annoying high maintenance way. Probably someday something will be more serious, but until then just stay calm, get the imaging, and carry on. 

We Never Run Out and There's No Escape

 

I'm having some breathing issues post MRI. It's not terrible (I don't think I'm altered to where I can't gauge it accurately, but it's possible I'm overly optimistic), but I'm uncomfortable.

Okay. After writing that, my slug brain finally offered the idea to check the pulse ox. Oxygen is fine, but down, on the edge of not fine. The dog bark cough is going strong. I'm drinking some hot tea at the moment. Heat helps, especially when the air is cold. After that, I'll suck down more albuterol and lay down for a while.

But first. Hi. I'm here to whine about medical things. You?

I slept really well though. For once. Did a lot of NSAIDs the last 24 hours to get the hip under control. However, I'm still pretty out of it from the steroids so I'm not feeling super alert and I can't catch my breath.

Medication #12 seems to be failing the teen. We will likely have to travel to a specialty clinic elsewhere in the state.  

I'm having a hard time imagining any ability to generate the energy for travel right now. 

Truly, this should be the easiest problem to fix. It's common. The meds have a stellar track record and yet...nope.

I feel like I'm trapped in that fairytale with the bag that always has food in it, except my bag is just a forever supply of medical shit. Every time I reach in looking for actual sustenance, I pull out more bullshit instead.

My bag has the wrong mojo.

MRI Happenings

 Had the pancreas MRI. The steroids and contrast hit me differently every time. So far just foggy with a headache, tired, racing heart, sweating buckets, and very hungry. All I want is sugar. I put a bunch of ground flax seed in some yogurt when even dinner wasn't enough and am hoping that slows my roll. 

On the positive side, my neuroma has calmed the fuck down. It's been keeping me up a lot. I have nights lately where I'm in and out of bed all night long trying to stop the muscle spasms in my foot. 

The spasms are so intense, they actually fold my big toe under and pin it there, literally bowing the ball of my foot. I can also feel every insertion site on my calcaneus. It's just yanking, yanking, yanking. It takes a lot of standing to get it to release. The spasms clench like they're trying to bind my feet to please an ancient Chinese emperor. 

So here's hoping there's a good long tail effect on the neuroma. With the spine cyst, the MRI prednisone bought me a week of relief. That would be amazing here!

The MRI itself took over an hour. Woof.  So much breath holding. There was one where I think the machine malfunctioned and forgot to tell me to breathe. I made it to 25 seconds and had to tap out. It kept going...

I am kind of bad at holding my breath.

Hubby was funny. He dropped me off and ran errands while I was in the MRI. When I got in the car afterwards, I took the alcohol wipes I had leftover from our trip and wiped down my stuff and kind of scrubbed my hands. We have a lot of that new norovirus going around here, and I know alcohol doesn't kill it, but I hoped wiping my hands off would mechanically remove it. 

Hubby watched me be a total germophobe and said, "Just don't use it on your face. It burns your lips." 

I froze. "Why would I use these on my face?"

He looked away and wouldn't make eye contact.

"Do I want to even know?"

He'd been using them as wet wipes because he couldn't wait to eat our takeout dinner until we got home (the MRI was super late this time). I guess it got messy...

But yeah. Pro tip. No alcohol wipes on your face. Or maybe I need to put some wet wipes in the car...

PS: Update: Foot was good, hip was not last night. The fucking hip kept me up most of the night. Laying for the MRI aggravated it. OMG. I'm so over running away from pain all night long. 

THC BS

 As I mentioned, I tried THC edibles while we were out of town to see if it would work for me.

Aaaand...

Nothing as far as I can tell.

I don't think my body was made for opiates.

I got a little groggy on 2.5mg of THC and more fever dream loopy on 5mg, but it didn't change my pain or do much else.

Can I even get high?

I'm not sure. 

I've hallucinated on opiate medications.

Felt dizzy and loopy.

But high? On THC?

Not as far as I can tell.

There is some noise out there that you have to try THC more than once to see how it's going to work, but after 5mgs the one night, I just wasn't interested. I didn't like the hangover and I didn't like the fever dream phase...it was very headache-y, flu-y, and unpleasant.

Am I having the experience most people enjoy but I'm missing the biochemistry that makes it fun OR am I having an actual weird reaction? I can't tell. When I research what it means to be high, it doesn't sound like what I experience. I don't get euphoric or giggly or find everything amusing. Everything is weird and harsh and unsettling...like coming out of a dark movie theater and immediately staring into the sun.

I have one more CBD product to try and then I'm calling it done. This is expensive and I don't like not knowing how I'm going to react. I mean, so far it's underwhelming but if the switch flips and things get wild...eh...that's about as attractive to me as thong underwear made out of barbed wire.

Which is unfortunate. I'd hoped that THC would be a go-to that would keep me from slowly poisoning my liver and kidneys with NSAIDs as I'm reaching the point where I could take them 24/7*. But no such luck.

I could use a little luck as apparently I have arthritis and bone spurs in both hips now. During the day, any discomfort is largely a non issue (unless there's a cold wind), but the pressure of laying in bed at night is very irritating and difficult to mitigate. It'd be great to have an easy button for that...

Next up is to get through the neuroma surgery, go to PT for the hips, and then get into injections. I'm also hoping the switch to warmer weather will help too. I don't know if surgery would be an option at this stage or how effective it would be so we'll see. 

(Side bar: I know I don't know anything yet on the hip, but just the idea of more surgery is a lot of whoa to me. It's kind of crazy how the surgeries, even potential ones, are stacking up. For a minute, I thought I must be having a lot of surgery compared to everyone else, but Google says the average number of surgeries a person has in their lifetime is allegedly 9 and I'm only at 7 going on 8. I'm not even average yet! That the average is so high is crazy to me too! I wonder what the median and mode actually are...)

As for my knee, the x-ray didn't reveal anything, not even the arthritis I was told was there years ago, so apparently my body either cured arthritis in one spot and it's a referral from my hip or it's a soft tissue issue or the x-ray sucked. I have no idea when I'll get to it. I'm limping along for now. Too many things want attention. The knee will just have to wait in line.

(I hate to say it, but the story with the knee is consistent with everything I bitch about here. Dislocated it as a teen. Told the doctor it wasn't right still after the brace came off. Was blown off by the doctor who sneered at me as if I was a medical junkie. Wasn't offered PT. No follow up. The joint slipped in and out of socket for years before eventually stabilizing. I would have periodic issues with pain and would seek care here and there, but nothing was ever done because I didn't meet any criteria to do anything.  Although, I did eventually get PT...but then I had to cancel it because I got diverticulitis and well, I gave up at that point. That and the exercises were all shit I was already doing. PT didn't have much to offer on this one. When it started swelling up like a cantaloupe post covid, I thought maybe things had finally become clinically relevant...guess not.)

*I avoid NSAIDs as much as possible. One, to preserve their power for really bad pain. I don't want to be habituated to them and then have no options with some new awful pain or flare. (Especially since opiates aren't going to save me.) Two, to protect my liver and kidneys. Which means...I have to mind control the pain. 

You know, it's all very tiring. It takes a lot of energy and grit to ignore pain and the demand is endless. My sleep is kind of a hot mess. Unfortunately, I've developed a negative association with my bed that I'm struggling to counter; a Pavlovian response where bed now equals pain despite my best efforts to keep things Zen-y sleep hygiene.

Make It Make Sense

I'm gearing up for my pancreas MRI.

I finally got prednisone.

The root cause of the problem was my sleep deprivation.

I was so stupid tired I forgot to tell the podiatrist I needed prednisone for the MRI they ordered.

So I used the prednisone for the pancreas MRI figuring I could replace it easily enough.

Ha.

WRONG.

The prescription request was radioactive. No one would touch it. Not the PCP. Not the podiatrist. Not the hep. You'd think I was asking them to strip naked and TP the DEA's headquarters or something. It was ridiculous.

God forbid I ever screw up because of my health.

It was an innocent mistake. I'd barely slept for a week at that point because of my foot.

I'm sorry. I fucked up.

Please don't let me die of an MRI contrast allergy because of simple sleep deprivation. (How boring. I'd like something more elaborate if we're going to be killing me. Operate on the wrong limb, ignore an infection, accuse me of being an addict without any testing when I try to get the infection treated, insist I'm pregnant with triplets, and then dump me in the hospital CEO's boardroom during a board meeting. Oh and tell me you have the cure for me but I don't deserve it...that was a fun one from that one doctor. At least make it interesting.)

I finally was able to get another prescription after some elaborate begging and pleading. I groveled. I apologize profusely. I begged.

Like I said, the whole process with allergies is a bunch of WTF. No wonder AI screws up when patients have allergies.

No one ever knows what to do. But I'm also told contrast allergies aren't that unusual. Pick one! Make it make sense!

Speaking of...

My addict parents are far too interesting. I'd kill for some boring from any of my parents. The stepparent sibling is also in the mix and they're not an addict but they're aren't functioning much better. They hate my parent and can't face the mortality of their sibling and themselves. There's a lot of triangulating going on with these guys and me and my siblings trying to make us take sides. We are all OVER IT.

Between the teen and I, there's been 9* medical appointments and/or tests this week. 9! And we are trying very hard to find things we can cancel! 

I don't have time for much more. I still need to work and my sleep is all screwed up which makes it all harder. There's no room on the plate for self sabotaging retirees. 

And yes, 9 appointments between us and 5 more next week. Yes, it's ridiculous. I don't know what to tell you. The worst part is I have even more specialist referrals now and I suspect I'm going to need more imaging...maybe I'll get by with an ultrasound though. Having a body that likes to grow tumors is a huge time suck and medicine has no sense of efficiency for patients like me. 

Basic things like dealing with the asthma are harder now because I have a new pulmo who wants to fuck with my inhalers and make me to tap dance for the steroid supply that will keep me out of the ER. Sure. Let's fuck up the one thing that we could keep stable. Let's assume me staying out of the ER and hospitals lo these many years has nothing to do with having meds on hand. Okay.

Apparently, I have no endo at all and it took 3 appointments and over a year to get the endo I've been seeing to tell me that they weren't my endo and I need someone else in addition to them. (No, really! And yes, I was point blank asking and they just...wouldn't respond. Welcome to being a woman. If they're already not listening and you push, that kind of man...they can turn on you, so ime as a woman, you have to tread lightly to have a shot at getting your needs met. Your mileage and approach may vary, but that's been my experience.)

The geneticist was supposed to evaluate for a unifying diagnosis, but doesn't want to do further testing since their 'calculator' shows my risk is 4%. But what do I care about their numbers when my one set of tumors are .007% of the population? I'm not a number. I'm a tumor factory...can we find out why????

4% is a lot of .007%...

Odds mean nothing when you're an outlier.

Again, make it make sense. 

This isn't sustainable. It's crazy pants.

Health Is Just an AI Prediction

The prednisone for the next MRI is turning into a cluster. I'm trying. No one is helping. The kicker is the new pulm won't give me the steroid refills I usually got. Yes, my asthma is worse than ever, and they're fucking rationing steroids that I'm so careful about taking I've actually had enough pile up to cover medicine's dysfunctions around the MRIs in the past.

Medicine will kill you if you let it.

That's my take away. 

And they'll soon be using AI as the executioner of choice.

Here's me, all positive and seeing the opportunity to use AI to expand access to science and improve outcomes for patients.

What a moron!

I forgot it's about profit.

I was being naive.

To wit, we have this lovely article... https://www.statnews.com/2023/03/13/medicare-advantage-plans-denial-artificial-intelligence/

Unfortunately I'm hitting a hard paywall and can't access it anymore. 

But basically some executive somewhere took data points from 6 million patients and created a database. Somehow there's AI in the mix and what it does is predict when you should be done with rehab or whatever medical whatever.

They then sold the program to a bunch of different insurance companies who quickly implemented it like they'd just won the lottery. (Are any health insurance C-suite execs doctors? Or, if they are doctors, are they all the sociopath ones???)

Predictably, it's harming patients.

As far as I can tell/recall, the system doesn't take inputs from the actual patient, and you'll see this in the bit of the article that shows:

"An algorithm, not a doctor, predicted a rapid recovery for Frances Walter, an 85-year-old Wisconsin woman with a shattered left shoulder and an allergy to pain medicine. In 16.6 days, it estimated, she would be ready to leave her nursing home."

Clearly, the data set gives no thought to medication allergies. When I started this post, I had NO idea this would all link so well with my issues trying to get prednisone, but yes, in general there's a huge disconnect when it comes to allergies and medical work flows and I'm not surprised it was a dumpster fire for this patient.

They were sent home even though they couldn't walk, couldn't care for themselves, and had extreme untreated pain. The AI had spoken, and like a God, its commandments must be obeyed. Gotta keep the spice flowing no matter who it hurts (that's a Dune reference in case you didn't know).

The system was then deployed to Medicare Advantage patients and again, predictably, it caused a lot of harm.

This sociopathic stupidity started in 2019*, so I imagine the pandemic slowed down the lawsuits that need to be filed.

But if you had any illusions that medicine won't kill or maim you in the feral quest for profit or that they won't use AI to do it...

Our health is just a profit multiplier to them.

And those of you with universal health care systems...don't be so quick to think you're safe. The pressure to cut costs--because humans constantly create systems with inherent resource scarcity--generates the same economic pressures as profit does. You won't go bankrupt, but they'll still kill or maim you just the same. 

Your health is a chance to cut costs to them.

*Which, again, why the fuck are we using 2019 science in a world where covid has fucked the entire substrate of health? Why are we assuming everything will be like it was? My lungs are worse. My nervous system is wild. Covid seems to be kickstarting my tumors, accelerating various end games. I have NO idea how I'm going to do with my foot surgery...

Many Funerals and a Wedding

We knew this would be a hard year for our family, but it's one thing to say it, another to live it. Sadly, we have elderly relatives who are starting to pass. We've reached the part of middle age where you start becoming the elderly relatives and for that to happen...well, people have to die and you have to get older.

So we've lost some dear, dear relatives this year. One passed right before we left for the wedding and the other will pass soon. Another has a terminal diagnosis and won't be seeking treatment. Yet another is terminal and is trying treatment (and holding the line thankfully, it's buying us all time).

Meanwhile, the dysfunction among the living is carrying on. I received a text or phone call about my parents every day I was gone for the wedding. Things have gotten bad enough for everyone to start calling. What people can't seem to understand is I have no legal standing to do anything. Neither do my siblings. 

It's fucked up, but my parents are considered competent. They've managed to avoid legal issues with their addiction so there's no record of anything. They are cleaner than bleach on white cotton. On paper, they are perfect. In person, they can pull off a facsimile of competency. You have to dig to see the problems with executive function and the authorities didn't care to dig until more recently.

I heard several variations on: "You need to do something. Just take so and so. Just take them."

To which I replied: "Without a POA, I can't legally take anyone. That's kidnapping."

They are always so surprised by that fun fact.

Again, I encourage them to call APS with their concerns. That's the only path we have.

And then the storm we got caught in made its way across the country to our doorstep where it knocked out power leaving my other parent with no heat. When the power did come back on, the furnace didn't work..so lights but still no heat. And my parent had a foggy episode where they couldn't organize very well and just waltzed off doing whatever, paying zero attention to the fact they needed to be home for the repair guys.

We were literally at the wedding trying to trouble shoot the heat and arrange for a service call. Then calling to try and get a hold of my parent because the repair guy was there. Then calling the repair guy to tell them how to find the hidden key because after fifteen calls to my parent, they still hadn't picked up.

Yeesh.

On a more positive note, the wedding went well. My foot did fantastic. Much better than I could have ever hoped. I took the prednisone I'd been given for my foot, plus lots of Tylenol and Advil and it actually worked! 

My issue was more low stamina and trouble breathing. Having covid a few weeks before meant I was pretty deconditioned and we boogied with n95s on which does introduce an extra drag on breathing when you're panting. We had to take a lot of breaks and we didn't last too long, but the period we danced, we danced more than anyone else there. 

And I held all my spins, which was surprising. People think spins are controlled in the legs, but they aren't. Direction is in the legs. Start and stop is in the legs. A certain amount of momentum is in the legs, but control in and out of the spin, control comes from your core. You need a pretty strong core to not fall over, but somehow I nailed all my spins. It's a bit of a miracle because there was no way I had the core conditioning for that. I must have had some muscle memory going.

I was sore and toddled like a zombie the next two days, but it wasn't terrible. I'd do it again...

One thing I noticed, though--that I didn't expect--is all the music changed. I don't know if it was just this wedding or if it's representative of a generational shift, but it was 80% hip hop 20% standards. No polka. No traditional music from my husband's culture.

I'm sooo not a hip hop dancer. I'm a swing/folk dancer. 

Well, crap. Is this why older folks always sit at weddings? The music has outpaced them and their joints hurt?

I wasn't planning on giving up dancing at weddings (or anywhere else for that matter) but shit. Now I see how it happens.

Capacity Is a Trip

 

I can't sleep. Ha. We're traveling and the time zone change isn't happening in my body. It's refusing to cooperate. My liver is pissed and refusing to let me eat now too. 

Your application to get with the program has been DENIED.

Not to mention all my phone calls are still coming in on my home time zone. The 8am appointment reminder is now a 3am ring. Family drama lands at 4am because of course it doesn't stop just because I'm out of town. I have my phone on silent, but I'm still somehow aware there's a call coming in. Bah.

We're having a good time though. It's been a major adventure. We got caught up in some historically bad weather at a national park and that was some hot holy shit. We survived, but it was eye opening to see how little the parks do for folks.

One of my takeaways is a lot of park infrastructure was built looooong before the US population doubled. Now you have more people than you have facilities, even when there's barely anyone there. If the weather is dangerous, there isn't enough shelter for everyone (depending on the park obv). Which is what we ran into. Half the people could fit. The rest were SOL. And it's not even peak season.

Does a national park owe you shelter? Maybe not, but then I'd argue they do owe you disclosure about current conditions and that didn't exist either. We were blind going in, assuming if it was open that meant it was safe. We had no way to know they do nothing to maintain anything, that basic things like sidewalks and stairs would be unnavigable.

Also tour companies will run come hell or high water. They run even if all the roads are closed and they can't even do the tour you paid through the nose for. Naturally, they won't tell you that up front. Then they kick you off the bus or train, lock the doors, and you're on your own until it's time to leave. There could be a tornado and those doors will still be locked. Add in there's not enough room in the park buildings for everyone, and no wonder so many people die or get hurt in the national parks every year. 

The national parks infrastructure is wholly inadequate and in dire need of updates. Failing that, start limiting the number of visitors so it's sane.

Not sure I'd do a tour again. Better to have your own car so you can compensate for shortfalls elsewhere. And check online for live cams at the parks before you go, although they may not show flooding or bad road conditions so it's not a guarantee.

But we definitely had a once in a life time experience that we'll talk about for decades. We ended up leaving early to avoid being trapped by weather related road closures. 

And if you're thinking 'Why is she bitching? She was at a national park!' Well, first, I'm not mad. I'm highly entertained even when it's all a disaster. Second, it's because that's ALL we saw lol. This is all I can tell you about; the weather and the bullshit. The actual view was all suffocating cotton fog and liquid battering rams from the heavens. It was so bad, the animals all disappeared into their hidey holes or huddled under trees looking miserable (and also kept us from huddling under the trees too lol). 

Poor hubby. This was a bucket list thing for him and...nada.

We do seem to specialize in terrible vacation weather now that I think about it lol. We had that one outdoor museum trip with ankle high flooding to the point where, after eight hours of wading, I was comparing my feet to pictures of WWI trench foot online. Then the recent cold snaps...which wasn't the worst thing we've dealt with. Shit, when we went to Europe in 2006, the weather was horrific with snow at the end of May and we had no coats and my food options were meager. I caught some horrible bug, which I assume freezing my ass off and not getting enough to eat while walking 10+ miles a day didn't help with, and was almost hospitalized.

Ha. Memories... The worst part is I was pretty skinny at the time, but still too tall and big compared to their petite baseline and I couldn't buy a coat until we were in another country where people ran bigger*. Also, I still registered as fat for Europeans. Add in some bloating from traveling and I got quizzed about being pregnant by the airlines for some reason and when I said no, I got mean nasty looks. Ah the curse of being tall with a curvy frame. How dare I not be a twee Parisienne twig! Sorry, World but I'm built more like a line backer and less like a super model.

And I should say, to be fair, we get decent weather too, but when it's epic, it's epic. This latest trip? It was beyond epic. It was actually dangerous. 

Anyway...my foot is doing remarkably well even though it's more swollen than ever. I've done better this trip so far than our last one. I did get that second cortisone injection and I did take a low dose of prednisone for at least one day so far (that was prescribed for my foot last year in anticipation of going to DC but we got covid and had to cancel). It's also warmer here which might be helpful and maybe the long, spiked tail of covid is finally done roasting my innards.

Sleep is my last demon to slay. It's just the time zone change and the beds are uncomfortable and  covid's impact on sleep is still processing through I think so... 

I do have some marijuana edibles. It's legal here and I want to know if it's even useful before I think about a medical card back home. I did 2.5mg THC, which I don't think was enough. I'll go for 5mg next. We'll see. Yes, it makes me drowsy but eh. Is it drowsy enough? If there's a high, I haven't noticed.

My other takeaway from this trip is people really don't care about covid anymore and very few were affected enough for covid to change their behavior. I knew I was a minority, but I didn't feel it like I do on this trip. I thought there were more like me, but apparently there's not enough of us to see each other in the wild.

Mathematically, covid couldn't kill or maim enough people to change us all.

It could only overwhelm our health care system (oh look! another thing where the infrastructure is wholly inadequate).

I've had a few comments about wearing a mask and a lot of looks. Apparently it's still unheard of to have health issues that require you to be more proactive about protecting yourself. People are disappointing.

The real sucky thing right now is the lack of sleep. I am running more tired to begin with, even when I do sleep. I'm not sure if that's a legacy of covid or what, but man do I hit the wall. I can't make it through a full day of activity no matter how much sleep I get. By 6pm I'm cooked. There's not much pacing right now, it's all go go go, which for me, is more go go go-to-bed.

But it's been a good trip overall. It's good to see family. It's good to be in a whole different part of the world seeing a whole different landscape. I think I might even be able to dance a little bit at the wedding...if I can stay awake.

*I mean yes, I'm sure there was Big and Tall stuff somewhere or even menswear, but fuck if we knew how to find it in that area. Just getting calories in was hard for some reason I still don't understand. Other countries, we knew the lay of the land, had a car, spoke the language, the mainstream size was the same as mine making it a plug and play 15 minute errand vs a major undertaking complicated by a language barrier and no easy retail access.

When Getting Up Isn't a Win

My foot is way more swollen for no reason at all. I'm up most of the night due to charley horses in both my feet. The other neuroma is acting up now too. The second cortisone shot doesn't seem to be doing anything positive.

I did start taking magnesium. I've gotten away from my vitamin regimen, but I've been low on magnesium in the past so I started that up again in the hopes it might be helpful.

And I'm taking Advil and Tylenol at night again. I might try taking some during the day as well to see if that makes a difference with what happens at night. 

Ironically, I'm fine during the day.

When I lay down, it destabilizes everything and makes it worse. Same for swimming. Weight on my foot is actually better than being weightless. But I can't handle a lot of weight bearing either. 

I'm so tired. 

I don't know. I might try sleeping sitting up between now and surgery. I'm trying to picture how that would work and how to make it comfortable...

Geopolitics again...

So what's going to happen? No one knows, but the risks are concerning.

I keep hearing this war is an existential fight for survival for Russia.

But the thing is, it's an existential fight for survival for the West too.

No one can afford to lose in Ukraine now.

Which means we have a very dangerous conflict, much more dangerous than I think most people realize.

And, again, if you look at global leadership as a continuum with one end being leaders of functional democracies and the other being ISIS or Hitler, we have more and more leaders, most of the leaders with nukes in fact, moving toward radicalization.

Nukes in the hands of people who don't have to listen to anyone is a big problem.

If Russia loses, we can try to solve that problem. The West could pull back from the brink of being an autocracy like China or Russia and actually stabilize the world. There's a chance, at least. The amount of Russian and Chinese fueled corruption in Western governments is definitely a heavy thumb on the scale. We'd need a lot of grassroots energy coming in to counter that corruption, but do the people of the West have it? Eh. We'll see. Still, it's a better scenario than the West losing.

If Russia wins, we will eventually see some kind of nuclear exchange somewhere because autocratic states will be the norm in a world run by BRICS, and once autocracies run out of resources to plunder within their own borders, they go a pillaging with a side of genocide. It's just a question of time.

Given that Russia can't afford to lose, it's unlikely we'll see them withdraw unless there's a major change somewhere in their sense of reality. That leaves our best hope as a negotiated end to the war where everyone gets enough something to commit to a new status quo. At that point, whether we publicly admit it or not,  and if we're smart (which who knows!), we switch to a Cold War style footing and covertly work to destabilize autocrats with nukes.

This means, Ukraine may have to cede Crimea and perhaps other territory for now. And potentially Ukraine may be barred from joining the EU or NATO, although I think that's a dumb move on Russia's part. Limiting Ukraine's options will just result in them being a loose cannon. They have too much military experience and are far to interested in fucking up Russia to leave them at loose ends.  At least if they join NATO, they are a known quantity and you know the rules they have to operate by. But hey, it's Putin's mistake to make.

But it's all around mostly bad news. I am looking for whether we have better outcomes on the table but I'm not finding them so far. Sorry. I know it's distressing. Give what energy and support you can to democratic institutions where you live. That's one way to feed the world's better angels in this mess.

I think I'm about done with geopolitics right now. I've got more on AI and medicine in the wings and then psychedelics and feminism....which ought to be interesting. At the rate I'm going, I just might combine psychedelics with feminism. We'll see.

PS: Someone asked me if Clinton as president would have made a difference. I doubt it. A President Hilary Clinton might have done less damage overall, but I don't know that she would have outperformed the chaos machine on PCP that was President Trump. Clinton was Secretary of State under Obama, a president who was exceptionally weak on foreign policy. Trump was also weak, but was such a wild card that he accidentally landed some wins because people had no idea what he would do next...it was a weird presidency, more like a psychedelic fever dream than anything else. One that directly fed into Putin's fever dreams.

However, no president since the Cold War 'ended' was clear eyed enough about Putin to actually invest the political capital to deal with him proactively. Our leadership has largely been lacking on the geopolitical front for the last 30ish years. It's not any one president who did us in. It's all of them.

 (There's a conversation to be had about how we can improve our geopolitics. We have more guardrails on domestic policy than foreign, but given what we're facing now, I'm not feeling that has served us or the world so well. Trumps shouldn't be able to come in and just blow up policy because he feels like it. Bushes can't be allowed to get distracted by one issue. Clintons and Obamas can't be wilted wallflowers.)

Love him or hate him, Biden is probably the best man (of the choices we had) for this moment in history. He not only remembers the Cold War, he actually had a seat in the front row. He knows the game and that knowledge will serve us well. He's also less corrupt than other options and generates very little drama (I mean, they can keep trying to make senile and Hunter's laptop happen, but it's pretty hollow), which means national interests can lead over other, more self serving agendas.

I Talked to a Journalist and They Sucked

 US-A T0d@y popped onto my radar looking to talk to people with chronic illness about covid now that everyone's back to normal.

I offered to be interviewed and we had a call.

But I didn't meet the requirements of their narrative bias and was told a few weeks later that they didn't use me in the article, but that my thoughts informed their take.

And then it wasn't even an article published in US-A T0d@y. It ended up in some regional paper that had the kind of hard paywall conservatives could only dream of having at the southern border. 

The misrepresentation of their affiliation and allowing people to think they were national media was interesting. (Perhaps they do work at that publication or are part of the syndicate, but I wouldn't know the details because the journalist didn't disclose shit. Apparently, even as a nobody, I need to do due diligence with the media.)

The things I said that disqualified me from being part of the article...

1. We need better vaccines and treatment and it needs to be more widely available.

2. I don't need anyone else to wear a mask or be vaccinated because I can control my risk well with an N95. We don't get sick when we wear masks.

3.If we had better vaccines or treatments, I wouldn't even need the N95.

So guess what angle the article took? It focused on 'everyone needs to wear a mask and get vaccinated and this is why people with chronic illness are suffering, because people won't protect them' which is a flawed narrative when N95s (or p100s if you want to get hardcore) work and when the vaccines are imperfect. The latest reporting is that the boosters start waning after two months and are not protective for those with chronic illness...far from the efficacy we need.  (Here's the full preprint study if you need it: https://www.medrxiv.org/content/10.1101/2023.03.02.23286561v1.full.pdf --they have a whole discussion about why it might be the vaccines aren't working.)

WTF is a vaccine going to do better than an N95? Nothing.

The article was solely focused on interpersonal dynamics and fomenting the discontent that feeds the culture wars. People won't protect us. Other people need to get vaccinated. Other people should do what I need. 

Apparently we're still not allowed to say things like 'wear an N95' or 'the vaccines kind of suck' or 'I can't access Paxlovid or other treatments reliably, the system isn't working.' And I must be the only person in the world more interested in where science is on better vaccines and treatments, instead of trying to control or blame what millions of other people do.

We are moving too slow and fighting without effective tools.

We are choosing flawed narratives that ignore that. 

We are not having quality discourse.

Humans really suck at pandemics and the media isn't helping. Like, wow. I didn't expect everyone to be so awful. How have we not gone extinct long before now? Oh right. Smart people have been saving our asses for centuries now. But to what end? This? Is this the pinnacle of human achievement??? Is this what all our smarts have achieved? This bullshit? Really???

PS: From that article I linked above: "The omicron-targeted shots also did not reduce the risk of severe Covid in chronically ill adults younger than 65, the study found."

I just want to point out, I can feel the flu vaccine kick in when I have the flu. I can tell the difference between having the vaccine and not having it. In comparison, I could not feel any of the covid vaccines kicking in when I was sick. It was like I had nothing on board.

I know this is an unpopular take, that it counters the overarching narrative that's been crafted, BUT THE VACCINES ARE NOT DOING ENOUGH. The media and the government can scream all they want that people need to get vaccinated, but it's not working as advertised and the data is starting to show that.

Recap

Since the covid vaccines and covid itself...

I've had major irritation and inflammation of multiple nerve growths that has resulted in two surgeries now, with a third on the way.

A previously stable pancreatic growth has suddenly started growing.

(For the record, there are other people dealing with growths after covid and I've been talking to Infectious Disease about it. I'm not off base. At the very least, the inflammation is fueling things that were already brewing. If there's an actual growth factor beyond that, no one knows yet. But this isn't all coincidental, it's covid.)

I have the joints of a seventy+-year-old and I'm not seventy.

I suddenly have sleep apnea that waxes when I have covid and appears to wane when I don't.

I struggle to walk. I struggle to sleep. I pant like a dog and feel like I'm going to pass out if I'm too active. The asthma is worse.

I doubt science will be able to do much to counter this chaos in my lifetime.

But I just wanted to recap where we are.

Now...on to geopolitics...because at least I'm still very curious and interested in all the things.

I've got a few YouTube videos for you from college professors and topic experts. 

1. Professor Sachs is up first. Note his position mirrors Russia's, but I like his game theory and there's a lot in here to think about.

However, he's an economist not a geopolitical expert, and apparently he also doesn't believe in a nation's right to self determination or sovereignty. In this talk, he participates in the dehumanization of E. Europe--treating the countries and their people as pawns that can be sacrificed at will. This is a very Russian point of view, one that has resulted in genocide in Ukraine multiple times at this point. Perhaps, since Sachs has advised various Russian leaders, he's adopted their world view. It certainly sounds like it.

But, as I'm someone linked to E. Europe in a variety of ways that don't include keeping the leaders of Russia happy, consider this question...

If Russia is so awesome, why did the vast majority of E. Europe align with the EU and NATO?

Russia will tell you that it's because the West was meddling and connived to make it so, but in reality, it's because the USSR treated E. Europe as an ATM during the Cold War. They plundered and bullied and impoverished E. Europe, and as a result, are generally not perceived as good or trustworthy in the region. There is a history of abuse behind why Poland has armed itself to the teeth and joined NATO. And they are not alone in that.

Sure, you can find Russian apologists, but ask around and you'll find there's a large contingent that really dislike Russia and want nothing to do with them. They want to be like the EU. They don't want a mafia state. 

Keep in mind, for the last 25-30 years, Europeans have been working in the West and making money hand over fist, money Russia certainly never deigned to spare, and they like it. There are cities in the US that are the second largest population centers for some E. European countries. There are countries were 20% of their population is overseas. 

Compared to the two main exports from Russia during the Cold War--what's-yours-is-mine imperialism masquerading as communism and the heavy hand of the Russian Mafia--and the fact that's what Russia is offering now, there's no competition. Russia doesn't want to add value, they want to take it.

E. Europeans know what they're choosing. Their eyes are open.

So that's why E. Europe isn't going to war to kick out the EU and NATO, but does work to kick Russia's ass. It's not because the West bamboozled them into NATO. They want to be part of NATO. They will literally supply tanks and planes and bullets and aid to ensure they don't have to go back to Russia. The logic of Russia's premise on this doesn't hold. (A ten-year-old could figure out the truth on this. Russia lies to us like we're dumb, and well, sadly, some of us are...)

So when experts and pundits go on and on about how this war is the West's fault, what they are really saying is that Poland, Slovakia, Latvia etc... don't have the right to sovereignty and that we should sacrifice the countries and people of E. Europe to appease Russia.

Put another way: Russia demands that in order for the West to have security, freedom, and peace, we must deny E. Europe their security, freedom, and peace. 

How is that okay? None of us would stay in relationships with someone like Putin. It's toxic.

Sachs is also concerned about wealth inequality, which is very real, but note he doesn't talk about Latvia or Lithuania or Botswana or El Salvador. No, he talks about Russia and China. In this case, wealth inequality is code for 'we want to control everything.' I'm all for putting Costa Rica or Mauritius in charge...they're actually functioning democracies but economically disadvantaged compared to the West, Russia, and China. Like, let's go. Let's have actual democracies lead. But equality of any kind isn't really the agenda here so...

Professor Sachs also says that we know the problems of geopolitics, but no one has any solutions, which is inaccurate. We know that democracy, while imperfect, interjects enough churn into the power structure to keep agendas from getting a stranglehold on a nation. We know keeping dark money out of governments and fighting corruption matters. We know free speech and education and strong labor movements make a difference. We know that every nation needs to be vigilant about their geopolitical strategy, not only building bridges, but having expectations that productive things will cross those bridges too.

If we'd done half the above, we wouldn't have a war right now.

But hey, if you've been on the payroll of corrupt autocrats, probably you've gotten used to not saying that democracy is good and corruption is bad. 

Despite my criticism, Sachs' talk is a good listen for testing the merits of different ideas and provides a good example of how insidious Russian propaganda is. I will note, much like more pro Ukrainian analysis, he is very concerned about a nuclear weapon being used. That, I think, is more concerning. When all sides see the same danger, you have to imagine there's some clarity there. 

Next up is Julia Ioffe, a reporter and analyst who knows Russia well. Her take here is more psychological, but it's interesting nonetheless. Very good overview of Putin's machinations and some of the missteps and wins of the West in dealing with him. She also sees nukes as a possibility.

And here's Marie Yovanovitch the former ambassador to Ukraine sharing the history she witnessed and also highlighting how the West screwed this up. And boy, did the West screw this up. 

(Note: If you're interested, PBS has a whole series of interviews with different players involved in the geopolitics of Russia and Ukraine.)

Then we have Professor Kotkin, a historian with the Hoover Institute at Stanford. The Hoover Institute is a center right think tank, so pre-MAGA Republican. This is a largely factual interview and it gets more into the impact of Russia's war on China and Asian geopolitics. It's a very interesting interview that reveals some of the scope of Russia's actions outside of Europe. The long tail on all of this is insane. What happens in Ukraine isn't going to stay there.

I will say, no one that I've found so far is talking about the BRICS colluding to pull off this war (at least when I wrote this). Since the BRICS are all largely headed by autocratic leaders no one can say no to (imagine a room full of Trumps trying to negotiate with each other--to one extreme or another, that's the dynamic), sustaining a high level of cooperation is or will be difficult, but I do think there's some effort to pull together going on despite competing agendas, vainglorious narcissism, and international pressure to not do so. 

The payoff is too big for them not to work the spots where their interests align. If they can find a way to cooperate, they'll do it. 

If Russia pulls off a win, China probably gets Taiwan, Iran probably gets nukes, India gets to hang in the winner's circle perhaps taking Pakistan, Brazil and South Africa probably get to be the very rich autocratic Kings of their continents (whether their coalition will give them nukes, I'm undecided, but it's a possibility) and the dollar and the pound and the euro go pfffft and there's a massive, painful (for the West) polar shift in how the currents of global, economic, and military power flow. 

And then someone, somewhere will get nuked. Because the BRICS will eventually turn on each other. Again, global leadership is devolving to have more in common with ISIS than not. Quality isn't improving, it's eroding. We have leaders with nukes who kill people who tell them the truth so no one says boo. We already see how that led to major miscalculations in the assault of Ukraine. 

And you can bet the West will be in the mix trying to subvert and topple various leaders which will compound risk. We're not going to cede power quietly and we could very well make things worse in the process. A lot of people will die.

Not to mention Russia, China, and India all have long standing territory disputes amongst themselves. The second resources are scarce or the economy is bad, take your pick of which friction point manages to throw a spark first. 

So. Our biggest mistake was not dealing with Putin decades ago. A mistake we made worse by failing to mount a strong deterrence against aggression once we knew were in for it. There's still a chance to create effective deterrence in Taiwan...I hope the West takes it. 

And we should be destabilizing the absolute shit out of the rest of the BRICS. No more dollar diplomacy without an overt, tangible ROI. It doesn't work. Americans will abandon their principles for money, but the cultural ethos in other places isn't that shallow. (Yes, I just called us shallow. We are. At least on a nation state level. Individual results may vary.) We need to stop trying to buy outcomes from frenemies and take our dollars to our allies and build them up instead. 

Let the strongmen of the BRICS make do with Rubles and Yuan with a 1000 to 1 (or worse) exchange rate. Let them struggle to afford genocide or conflict that could go nuclear. 

Again, the West just sort of abdicated all responsibility for ourselves and the world except for the War on Terror, taking bribes from Russia, sometimes even China, and then being manipulated via social media until we're more divided than we've ever been. (Y'all there were literal Nazis protesting in my area this past week. Nazis. NAZIS. Like...what. the. fuck.)

Ultimately, even if he gets the root cause wrong, Putin is right to blame the West. This was our war to prevent. (This doesn't excuse Putin. He certainly could have been the better man here, but he decided to double down on autocratic dysfunction and start a genocide. No points for him either.) But now the West has been blind to reality for so long, we may not be able to pull everything back from the brink.

This is an absolute cluster. We'd better hope Ukraine can spank Russia hard enough that they give up and go home without escalating to nukes.

As to why I care...win or lose, this is going to change the world same as covid, same as AI. I pay attention trying to extrapolate--if I can--where the hits will land. I'm not so old that it doesn't matter yet and I've got a kid to launch, which means career choices need to be tight.

How Many Ways Can You Cut a Foot?

 The podiatrist is recommending surgery. A neurectomy to be precise.

So. I'm having surgery. I know it's relatively minor surgery, but I'm not thrilled about it.

The treatment options for Morton's Neuroma run something like this...

A variety of injections and ablations.

Then surgery of which there are two approaches--decompression or neurectomy.

The injections can work but don't work for most, and thus, aren't preferred. So there goes all my previous excitement about maybe avoiding surgery.

Decompression surgery is the sole provenance of private podiatry practices and their marketing outreach. How do I know this? Well, there apparently isn't much to say about Morton's Neuromas in the medical literature which means search results are 90% sites for private clinics.

Private clinics where the doctor always seems to be an exceptional genius who invented a decompression procedure to treat Morton's Neuroma.

After like, the fifth site where the podiatrist had this whole spiel about how they invented a new technique and are the only ones who can save you with nary a mention of failure rates*, I was like...okay, this is bullshit. (See also: All the previous times I've talked about how surgeons will say anything to get you into surgery.)

Did they all hire the same marketing firm or something? How is this peacockery allowed by the state medical boards? Can you just claim to invent a procedure like that? OR are there that many super special ways to cut out a neuroma? 

100 Ways to Slice a Foot, Invent a Procedure, and Increase Podiatry Clinic Profits--some conference workshop somewhere.

Even more insidious, some of these geniuses start patient communities where they can shill their patented surgical miracles. There's a whole marketing machine that overtly manipulates patients.

But if decompression surgery for Morton's Neuroma is the second coming of Christ the private podiatrists say it is, mainstream hospital system medicine has yet to convert. 

Mainstream medicine cuts out the nerve and that's the only option on the menu I've been provided.

Either way, the procedures work about the same from what I can tell. So surgery here I come. Bah.

*For those looking for an ethical podiatrist...if their website mentions failure rates, if they talk about decompression surgery being an option in a specific use case (earlier in the development of symptoms) instead of trying to sell it 100% of the time, and don't claim to have invented the 5,000th special procedure for Morton's Neuroma, which is a condition so boring and unexciting that there aren't even 5,000 medical studies on it (this isn't cancer)...probably they are good egg. At they very least they're more up front than 90% of their private practice peers.

Why Is the Media Pitting Patients Against Each Other?

 A few months ago, I got a hot and bothered text from my anarchist extreme left sibling ranting about people taking Ozempic from diabetics. The injustice of it all was too much for them.

They'd seen an article.

An article.

Since then, that one article turned into dozens which has sparked all sorts of nasty commentary from the Greek Chorus that is social media.

No one will google. No one will shut up. No one will ask why am I jumping on the hate bandwagon? Or why the media is pitting patients against each other? Or where is the voice of authority that properly calibrates the narrative?

Hating on non diabetic users of Ozempic is a huge dopamine hit and nothing unites people like what they hate.

And everyone really hates fat people.

Never mind there are at least six other medications in the same class.

Never mind that Ozempic is new and expensive and likely not cheap compared to its peers. 

No one is dying for lack of Ozempic. Seriously. No one. They may have to wait a bit until they can get Ozempic, but they'll have medications they can use in the interim, likely at a lower cost than Ozempic to boot.

People are confusing the crisis around cost and accessibility of insulin with Ozempic having supply issues.

And then they hear people like Chelsea Handler dog it too. But, here's a headline for you, this is a person whose comedy act includes a bit about how she swallowed her yeast infection ovule like a pill. I don't know what vaginas out there reach the age of what? 50? and don't know how to take yeast medication, but apparently that makes you a medical savant when you're famous.

Why the media decided to weaponize the hate on this particular issue is beyond my ken. It serves no one but the stock market.

But yes, let Chelsea Handler be the medical expert. I mean, at least we're consistently stupid in the narratives we amplify.

Again, our ideal and actual culture are so far apart they may as well be in different dimensions. Again, how do we get back to center? Because if we don't, bad things will happen. Simple things like this go into the pot and simmer with everything else and the end product isn't good.

We are collectively having our pet hates weaponized, pushing us to choosing violence. That's my take on it, anyway.

Life update...

I'm still struggling with the post covid nerve and joint pain with a side of foot neuromas--taking lots of  NSAIDs--but I finally did get out into the garden to start preparing for spring proper. I was going to start a bunch of seeds, but I realized I'm going to be out of town and can't count on anyone to water them.

(I've paid people. Tried different people. Paid more. Asked family to do it. The reality is...no one waters the garden. They kill it. Every time.)

So starting seeds will have to wait until we're home. I'll just keep plugging away at clean up and organizing for now. Maybe clean out the one flower bed and sow the flower seeds...

The big question is whether or not we smothered the strawberries to death trying to protect them from -40 temps. Which I hope not, but...eesh I'm not so sure they're okay.

Shapewear for the wedding dresses has arrived. I realized a bit late that I need all new Spanx because everything's too big. Both dresses look great. Ahh. It's going to be hard to decide which one to wear!

Hair cuts are up next. I haven't been to a salon in over three years. I've been cutting my own hair all this time. I have hair that hides mistakes well so it's just been easier to DIY it, but I'm doing my best to spiff up for the wedding.

My energy is doing okay. I get tired faster, but my carrying capacity isn't as limited as it was with my first round of Covid. The biggest issue right now is the unrelenting 'painsomnia' from my joints and nerves. Yawn.

But the covid inflammation is going down. I think? My foot has been the main indicator. At its worst, it felt like I was walking on just the toe box of a flip-flop...there was a cliff near my arch where the swelling suddenly dropped off. It's gone down to more like half a thin sandal sole.

Maybe in another week the pain will mostly be gone?

It's Not Zero Luck or Bad Luck, It's Negative Luck

 

Oh the teen. The poor teen. Just when we think we've got a win, that we've got something sorted, it all turns upside down again.

The dynamics gunning for her beggar belief. They really do. This is unbelievable.

So. Got a new diagnosis. One we thought was simple and straightforward. It's common, there's a turnkey system in place, meds should be plug and play. Easy peasy, right?

Wrong.

It interacts with one of her medications, the meds we can't get to work, that we are constantly back at the specialist trying to find a solution. Naturally, medication #11 looked like it might be a win aaaaaand she can't take it anymore. It's not considered safe.

This has thrown everything into chaos for the teen. This is the #1 thing that limits her ability to function right now so not having it buttoned up is a huge problem. We start medication #12 now and have no clue if it'll work. After this, we're out of pills to try... 

The one time we had a medication that seemed like it might work, she's disqualified from using it because of another diagnosis. I can't believe it. I'm aghast.

If we can't get this under control, eventually she'll have to have surgery. 

I can't believe how complicated simple things can be. I really just can't believe it. 

Also, it seems to me that the teen has some kind of issue processing this class of medications. Like, a med will work initially, but then her body seems to adjust or stop processing it and then it doesn't work anymore. Times eleven. And now her options are even more limited because of risks associated with another diagnosis.

I know I've said it a lot already, but honestly, I can't believe this. Every other kid and adult takes these meds and is fine. How is the teen not fine too?????????????????????????????????????????????????????

(And yes, she does take everything as instructed. I've done the whole are you sure you're taking your pills correctly thing and supervised what she's doing. Like, yes, I did actually go down the rabbit hole of maybe my kid is screwing this up, or worse, purposely engineering problems and no...that's not the issue.)

Will the Lottery Get Better?

 

I'm having a moment of serious irritation that my main function in this civilization's healthcare system is to produce profit for those who really don't give a shit what happens to me.

The delay in the MRI didn't save the insurance company any money, and in fact, it let things fester to the point where I may never have proper biomechanics in my foot again. I'll be extra expensive on the back end dealing with that fall out.

Here we are again, proving what I keep saying...we need to get to imaging faster. Yes, I hate the contrast and that's not ideal, but we've also got to stop letting things fester into the worst outcome for patients.

We've got to stop delaying it because of costs. By my rough estimation, the insurance company will end up paying the equivalent of at least one more MRI in extra costs that could have been avoided by the time this is over, if not more.

Of course, apparently the math holds that most people don't need any imaging at all and they've decided all the extra they pay delaying imaging is still cheaper (in my experience, corporate finance sucks at capturing all the cost impacts of poor management so...I have some reservations on that...they make the numbers say what they want and there's a bonus incentive for it*). So I guess I win society's Shirley Jackson style lottery here. Again. Unfortunately, I'm not inclined to be gracious about it. This is bullshit.

I wonder what happens as our demographics make people more valuable and less expendable? We see this new term 'labor hoarding' being bandied about in financial analysis. Companies are giving raises to retain staff now because they know they can't replace people easily anymore. If they can't afford to lose people, they also can't afford for them to be medically fucked by insurance companies and inefficient standards of care. You don't want people out on disability for longer than necessary. And competitive employers will poach your best people with better insurance.

Will we see things shift toward more proactive healthcare to preserve the output of the population? Or will large corporations suddenly discover a newfound love for immigrants who will bolster the demographics and maintain the status quo? (Or will AI just take over? But then who's earning enough money to buy what AI produces?)

Low wages and lots of people have allowed corporations to make healthcare costs a high deductible personal responsibility complete with a heavy dose of moralizing gaslighting when people can't afford it. What does it matter if people die or end up disabled when there are 50-100 in the labor pool who can replace them at any given time? 

What happens when you don't have those people anymore? Even if we increase immigration there'll be a gap period while people get up to speed in a new country...perhaps there'll be a short lived, but golden era of improved care and access for people. Maybe we can win a better lottery for a while. Or somehow AI will fill all the gaps and it'll be same ol', same ol'.

*Oh man. Now I'm really wondering how AI is going to hit corporate taxes. Maybe I just worked with particularly stupid C-suite execs in my corporate days, but to my mind, you just know they're going to eliminate the Accounting Dept, turn it all over to AI, not realizing it doesn't know the loopholes and tricks, that it'll follow tax law as written, and then they're going to be so surprised when the shit hits the fan. At some point somewhere somehow AI is going to get the C-suite crew fired lol.