The Actual Doing Is A Separate Hobby

 I'm taking a stab at Instagram. We'll see. You can find me under Pinata of Pathology there. 

I'm thinking it'll be a bust. I didn't realize how toxic the Chronic Illness space had become. It's very trendy and you either fit the trend or there's no room for you. And everyone wants to be a rockstar...lots of you follow me, I'll follow no one. There's no community. It's people vying for attention.

When did everyone become so self centered? There's no Oprah of rare or chronic disease. No Oscar for best POTS fainting video. No Emmy for best Long Haul Get Ready with Me. 

Patients should be banding together and pushing medicine to change. Instead everyone wants to win gold at the Sick Olympics. Like one individual getting the gold accomplishes anything for anyone else.

Worse, I don't have POTS or Chronic Fatigue. My conditions aren't popular. No one's heard of most of my stuff. I'm not young. And while I am a mom of a kid with rare disease now, that's really new and not how I'm entering the rare disease community. I'm coming in on the wheels of my own rare disease. I'm not here to post pictures of my kid and use the word warrior five hundred times. I'm not a warrior. I'm fucking tired. 

But there are precious few adults with rare disease on social media. Wow. 

Where are the cynical swamp hags of chronic illness? 

TikTok is marginally better. There's a lot more back and forth between patients and medical providers but even then it's a lot of POTS and EDS and I'm a super odd duck who moos the word fuck instead of quacks.

So I guess I'll be poking at TT. We'll see.

Why the change? I decided I have things I want to say. Things I want heard. And I think I can provide some value. But we'll see. Like I said, I'm tired. I'm not really interested in chasing fame on this or having to do the insincere fawning it takes to network your way into traffic on social media.

It seemed like a good idea at the time...

The Pinata Version of Butthurt Doctors

 (If you click it, it enlarges and removes the blurriness. At least that works for me.)

Bippety Boppity Boo

(The blurriness seems to be a Blogger issue.)

 

MRI Results and Other Data

 

Hip labrum tear.

Well, at least it's not a tumor.

Surgeon consult in a few weeks. I don't know yet if I'm actually a surgical candidate.

But this will eventually end in surgery. It's just a question of when. Hip labrum tears are the gateway to hip replacements.

Bah.

I assume the grapefruit is reflecting muscle strain from compensating for the borked kinetic chain lo these many years now.

I believe I injured the labrum initially when I fell 5-6ish feet and broke my elbow a few years ago. You know, 'they' always scold pet owners about how expensive vet bills are, but no one talks about how much pets can cost YOU in medical bills. My black lab rescue yanked me straight off the porch as a puppy. Then she broke my kid's tail bone. 

She doesn't have good awareness that she can hurt you, and she was a wild ass puppy...as in we actually thought we might have to rehome her at one point, and that was before she started breaking our bones lol.  

She's going to cost me $30,000+ and a lot of mobility. Yeesh. Do I have all the luck or what?

Thankfully, aside from a serious fetch fetish (I believe I've mentioned this before), she's aged out of her particular brand of militantly destructive chaos and doesn't pose much of a danger anymore. But she was an insane puppy*. Absolutely insane.. She was a master class on why people give up on pets. I used to be a judgy bitch about people who gave up on their dogs, but holy shit was this dog a big piece of humble pie. I finally got it.

If we hadn't had dogs before, trained dogs before, worked with this breed before, we very likely would've bailed. She was not a dog for beginners. We were experienced dog people who'd had rescues and puppies from cradle to grave, we've never walked away from a dog, but she about killed us all.

So that's the hip story.

On the asthma front...the second I got cocky, I had a flare. Murphy's Law of Pinata. But I'll note it's coinciding with when I need my next shot of Ozempic. SO maybe there's a correlation there. I'll have to watch and see if the pattern holds. But for today, I'm taking the inhalers.

So weird. The air quality from Satan's c diff farts didn't bother me. It's just random asthma bullshit for no good reason.

I will say this flare starkly illustrated that I can tell the difference between serious and non serious asthma. I had an inkling this one was going to be a problem from the start. I don't know what it is that I'm perceiving when I have these insights, but I do actually know my lungs pretty well. (Assuming my oxygen isn't so low that I'm addled...then it all flips and I get overly optimistic.)

And of course now the insurance is starting to balk at allowing me to have Ozempic. Sigh. It'll suck to have this rug pulled out from under me. But no one can afford to put everyone on this. Society couldn't afford healthcare before we barely had any effective treatments for obesity. Now, it'll collapse the medical financial system. So no health for me. Or anyone else. Be rich or die. That seems to be the reality anymore.

Teen is holding steady. Doctors have confirmed receipt of the message but no marching orders yet. It's frustrating. I would've already tested the fever genetics by now. All the fever genetics. But you have to earn that through suffering in our current medical system. And so we sit, letting my kid suffer, trying to somehow trigger the next level of care. Hoping medicine decides to accelerate.

*I think I've mentioned this before as well, but I always worry about some random new person who's never been here before not having the background. And then people start spinning assumptions based on incomplete context. I try to head that off when I can see the potential for it. So. She was a rescue from a home with domestic violence and she was/is a bit traumatized and I'm not sure she'd been socialized very well before we got her either. 

Spike

Teen's fever is going higher and higher. She's not sick. In fact, she's off with friends as I type and sending me screenshots of the thermometer. She could tell it was coming on and took the thermometer with her to document it as we're doing another fever diary.

We're not crazy, we're doing a fever diary.

My inner momma bear is agitated but there's nothing for me to fight. I would if I could. I'm ready to take whatever this is down. Put me in, Coach.

But how do you throat punch air and heat? How do you beat biochemistry into submission?

I emailed Infectious Disease. Maybe they know.

Ahhhh. I'm here to distract myself from fretting. I don't like the fever. I especially don't like that it's going higher. What the fuck do we do now????

Let's see. What can I natter on about?

The asthma is still contained. I do still have asthma, but I don't appear to need daily meds right now. If this holds, it'll be really cool. It'll take me at least a year to confirm it. I need to get some respiratory illnesses, go through some seasons etc... And insurance has to keep covering Ozempic.

Oh! I think I finally figured out what was different now vs. last summer. I'm finally at the full dose of Ozempic. I was still working my way up to the full dose last year. And there's apparently some research showing these GLP-1 meds help with autoimmune conditions so maybe it is all connected. Exciting stuff!

Foot/Hip/Grapefruit...all about the same and slightly flared since whatever bug went through the household. PT left me limping after every session, it ended up being a trigger for stiffness and pain. My foot has regressed quite a bit...it's gotta be Covid. Only Covid fucks my nerves like this.

And they're finding that the vaccines can cause long covid. Did you see that? I am one of those who had issues with the vaccine (although not quite the same ones as they're finding in their research, but I'd bet I'm a very small % of everyone so probably no one will look my way). I got so much blow back for talking about how the vaccine caused a lot of problems for me. People have no nuance. Having a vaccine reaction is not the same thing as being anti vax.

I don't know yet what I'm going to do about the next boosters. I don't think it's a good idea to get more vaccines but I also don't want to be unprotected, but I also can't tell that I get any protection from the vaccines anyway and whether whatever protection I may get is worth it...does the benefit outweigh the cost if the vaccines are incapacitating me for weeks or months?????? 

Some doctors have told me no, it's not worth it. But I'm going to get covid again, it's unavoidable and the risk of more severe covid worries me. I'm supposedly keeping the worst at bay with the vaccines and that's not been great. I don't want to deal with something worse!

Maybe the Novovax vaccine? Maybe that'll hit different?

Weight: My body decided to drop some weight...even before this latest bug. Why? Who the hell knows. We could say it's that I'm more active now that I'm up and about since the foot surgery, but I have all this past history of exercising like crazy and eating right that both did and did not generate weight loss. And then the history of eating like crap and doing jack shit and both losing and gaining weight. So fuck if I know!

 

I keep having this perfectionistic urge to double down on doing all the things you're 'supposed' to do to lose weight so I can crank it out and get 'r done, but then I remember that often has no ROI for me so why am I trying to kill myself again???? 

I...don't know what to do to facilitate further loss. I'm close to my initial goal and now I'm trying to figure out how much further I want to take it and if I can even make it stop. How do you control weight that's so far removed from cause and effect? When illness interrupts you constantly?

I'm just eating whatever and am active however right now, and that's kind of how I've played it the last few months. With all the family chaos on top of surgery recovery plus the hip and this last bug (which I still have some pretty bad nausea from at times and can't eat) there's just been no other option but to ride whatever wave I can catch. There is no diet, there is only survival. That, apparently, has been a brilliant diet plan but it's quite junky. It's not really how I aspire to eat.

One unanticipated problem...my clothes are getting big faster than I can wear them. I bought a swimsuit and some other new clothes for summer and stuff is already getting loose. I have a dress I wanted to wear dammit...

Gardening: I harvested peas! Yay! They were an experiment and they grew so slowly I wasn't sure anything would happen. But we had exactly 15 peas in our stir fry (before I got sick and stopped being able to eat). I only planted 6 plants so it won't yield a lot. I should get one good batch of peas shortly (around a 1/2 cup) and then they'll be done. 

I got 1/2 cup of garlic scapes from the 80% failed garlic crop. I threw them into the stir fry with my fifteen peas. Meager gardening hauls over here lol. 

My three-year-old broccoli seeds are happy af. OMG. I might grow broccoli from old ass seed! Holy shit!

And I have two heads of lettuce that look amazing and two that would rather skip school and smoke pot and never grow up. The slackers will go into a shade garden for a fall harvest (if I can keep them from bolting).

Strawberries...doing good. Got a few quarts from them which was a surprise. I really like strawberries because it's impossible for birds and rodents to clean out your whole crop. We got some, nature got some, everyone was happy. <-- That's the sweet spot of gardening, the spot where there's no stress and little disappointment. You need to plant enough for attrition in order to lower the stakes so you're not having to micromanage things to preserve a yield. But the scale that takes is a lot to manage for most things so...

Black raspberries. OMG. These are AMAZING. We've picked two quarts so far and will likely get another two. They are INCREDIBLE. Gardening is hella expensive, but this is why it's worth it. The flavors you can get from homegrown produce are breathtaking. They're so sweet, they taste like black raspberry jam. Beyond delicious. We're going to make a low sugar freezer jam and probably some muffins this week. And we'll freeze some for crepes or muffins during the winter.

Asparagus is all ferned out and looking like it had a glam up Brazilian blow out. Harvest was small this year, but I'm hoping I fixed that so next year will be better. At least I have a good system for managing the asparagus beetles now. 

Dwarf tomatoes and green beans are sprouting. Cukes are growing. The poblanos look like crap...tried transplanting them to see if that would help. Some of the flower and herb seeds are coming up finally. The potatoes and onions look good...at least the ones that decided to grow. Fruit trees are hanging in...only one bush struggling so far, that one may not make it. 

We'll get a quart or so of blueberries. The blueberries are slow growing bushes (for us at least) so while they're bursting with fruit, it's all on very tiny bushes, no big crop possible. 

Peaches are coming along. I'll get maybe 10 apples from one tree...the other had it's blossoms picked off by deer and never fruited. We'll have exactly three pears as the animals ate all the tiny baby fruit...we literally went from dozens to three. 

I've got net bags on everything now to protect it and we've added deer net fencing around the metal fencing because to keep out rabbits and other problems you need deer fencing. The metal panels we have work fine for the deer--ironically we don't need deer fencing for the deer lol. (They got the apples because the tree is outgrowing the fence...once it's taller this won't be such an issue, right now the branches are the exact right height for fuckery.)

My one tiny apple tree baby is recovering from attempted murder. This fucking asshole rabbit kept eating it every time it tried to grow and I finally put it in a five gallon bucket that takes it out of the rabbit's eye line. It's kind of interesting how height impacts risk of damage from different pests. I noticed it with the Japanese beetles too...they like taller plants and ones lower to the ground don't get infested as much. 

We got a raised bed set up that has a greenhouse cover so I can try to do more winter growing. (You actually sow the seeds for winter growing in the summer still so we needed to get that moving.) Maybe this winter I'll actually get somewhere with that lol. My attempts at cold weather gardening have all been dismal failures so far.

We're slowly getting an irrigation system set up. It's nothing professional. Probably the pros would point and laugh at us. But we've got a complicated system of garden hoses, soaker hoses, connectors, and on/off valves to water a lot of shit with less effort on our end. Maybe a total of a 1/4 acre of hoses and connectors so a decent chunk of space. 

I'm excited because it was taking us hours to water everything manually. Now we just turn on whichever sprinkler, set a timer on our phones, go out switch valves on and off and repeat. We can water everything except the orchard...that still requires us to carry buckets, which mostly hubby does that, I pinch hit when necessary.

And that's it. I'm out of steam. 

God damn fever. Fuck.

Rare Disease by the Textbook

I've been ordering old medical textbooks in an effort to understand how medicine approaches rare disease. To what end? I can't really say. On a more rational level, I suppose I'm hoping I find something that will be helpful and on the less rational level, I have a strong drive, almost an itch to solve the problem...when I know I'm so far outside the centers of power and authority and resources on this that I'm being dumb. 

But my inner Don Quixote is convinced this time I'll actually hit the windmill. 

So here are my takeaways thus far...

You know how 'they' say doctors don't get trained on things? Like, I knew that. I believed what I'd heard. But now I've seen it. I've witnessed it.

A 1500 page textbook used in medical school and my shit's not even in there. My kid's shit gets a one sentence 'beyond the scope of this text' dismissal.

I have a diagnostic framework type text for peds and that one has a decent schematic EXCEPT for a weird bifurcation where with the same lab results, we either get to the right diagnosis OR it's child abuse.

The diagnostic schematics are great at highlighting how doctors test and then give up if results are normal even though it's actually an indication of what direction to take next in trying to figure out what's wrong. The schematic knows to keep going, why don't doctors???

Google and Youtube are better. Way better. I don't know why we try to say it's not. And medical education needs a massive overhaul. Like, beyond massive.

Then I bounced around the internet for a bit. I looked at a lot of books, a lot of articles. There's some stuff that makes me chuckle...students clearly going for a pub credit by writing about Rare Disease knowledge among med students in tiny little nowhere countries. There's this book that's SO proud of having 1000 diseases covered when there are 7000 rare diseases. There are initiatives trying to connect patients with students to educate future care providers about rare disease but they are not well designed, poorly executed, and failing to thrive.

The books and the various rare disease orgs are doing it wrong I think. That's the conclusion I draw. I am looking for discussion of rare disease as an overall concept, but 99% of what's out there is about a specific disorder. We're using weak spotlights when we need a sun.

The way we approach rare disease on either the medical or patient side is too niche. Everything is siloed by diagnosis; the books, the education, the patient groups, organizations. There's no cross diagnosis summarization or schematic development going on. I found one mention of how there are commonalities across rare disease diagnostic work ups but no list of what they were. Supposedly there's training somewhere, but I couldn't find it.

Right now, it looks like the main focus is diagnosing the 70% of rare disease that's genetic. That's an AI, big data friendly investment opportunity. It's got money so it will happen. Which I'm all for low hanging fruit, but no one's talking about how we have no resources in the pipeline to treat all these patients nor what the plan is for the other 30%. Also, we can't actually afford to treat all the rare disease we can now easily diagnose. 

The cost to diagnose is deflating, the cost to treat is not.

All I can think is we really do need a rare disease specialty. We're going to need doctors who want to steer the ship for patients, but everyone is so hyperfocused on just figuring out the diagnosis part, they're not thinking about what's next in the schematic.

My rare disease training from my previous post still stands as best in class at this point. If there's still stuff on the schematic, you can't give up on the patient. Normal results don't rule out everything. If the patient wants to keep going, you have to keep going. And we don't give up on abnormal results, ever.

Thorough work-ups are how we start to make a dent in this. Yes, cost is an issue. That's a problem, but at least give patients the chance. At least allow them to access the science if they can swing the costs of it. Facilitate the diagnosis, don't block it.

Science belongs to everyone and people have a right to generate data that will optimize their outcomes.

Two Different Hobbies

PCOS and Pancreatic Cancer

 By the way, starting in 2019, it looks like PCOS has an increased rate of pancreatic cancer. Small data sets, but it's a data trend across different studies.

Fun.

I was diagnosed with PCOS right on the cusp of it going mainstream. 

And the problem with being first or early in a new mainstream medicine patient category is you are also first to experience all the mistakes and blindspots that the cures and treatments don't or can't account for.

You don't get the refined care, the care medicine evolves into as they learn and gain experience. No, you're the experiment by which everyone else will live better after you're gone.

Sometimes progress is just a different way of making the same sausage.

So fun.

Covid Smells Bad

It's gotta be Covid. My sense of smell is all over the place. I couldn't even sleep last night because the smell of putrid vomit kept me up.

It was my husband's feet.

In the process of problem solving that, I sniffed myself and discovered I smelled like a maggot infested swamp hag hatching stinkbugs out of her ass.

It was so bad, I ended up on the couch in the middle of the night eating popsicles because I'd been up long enough for my body to scream about being hungry like a newborn.

I keep sending texts to my family accusing things of stinking. I've triggered a lot of steam cleaning and mopping lol. Everything smells bad.

Today, I finally felt better but I messed up by trying to take the new dog for a walk. That triggered nausea, fatigue, and panting. Too soon I guess.

It IS mild overall in the sense that there's nothing super serious going on. It's like a bad flu with mono-like malaise. My capacity is increasing slowly, inch by inch. Today I think is the turning point. It's just a question of how long it lingers in my system and if it circles back to my joints and nerves.

In other news, anyone catch that the way 'aliens' are going mainstream is over an argument about how to ACCOUNT for the spending and who's doing it wrong?

Like, essentially, taxes and finance. The same way they caught Al Capone.

I can't stop laughing. Because of course we're going to find out aliens are real because of stupid spreadsheets and petty politics.

https://thehill.com/opinion/technology/4067865-congress-doubles-down-on-explosive-claims-of-illegal-ufo-retrieval-programs/

My Body Is so Creative *throws confetti*

I essentially have mono. That's the only way I can describe it. And I have no appetite with a lot of GI upset. The low blood sugar is getting pretty bad. 

I'm fighting back, but it's not so simple. I seem to be having trouble keeping my blood sugar up even when I eat. I wake up in the middle of the night dying of hunger...but then I'm battling nausea all day, choking down carbs to beat it back. If I get a decent meal in, it's a fluke and it doesn't help.

It's taking weirdly high amounts of carbs to get me out of the pit. It took so much sugar yesterday to get to where I could even think about toast that I'm too embarrassed to document what I ate.

Things smell bad. Noise makes me pukey. Some pizza place texted me a coupon and I wanted to hurl just from seeing the zah word. The fridge reeks like putrid corpses. The house smells like an elephant is rotting inside the walls.

Yesterday I was weak in a way I've never experienced. I haven't felt competent to drive. I'm not really keeping up with much of anything. 

I have pockets where it's better and then hours where it's awful.

Something's...off.

Take Care of Maya - Who Watches the Doctors?

Phew. This one is heavy. I can't watch the documentary. I can't. But I did read this article which is an excellent overview. 

If you're not familiar with the case, here's a quick summary: Child with rare disease ends up in ER for abdominal pain and the hospital decides they don't like mom's tone. She is accused of Munchausen's by Proxy and child abuse. The rare disease diagnosis is revoked and the family is separated for months...all while the hospital treats the child for the rare disease they insist she doesn't have and bills insurers almost a million dollars. 

They later decide it's not Munchausen's but somehow manage to keep the family apart anyway. The medical and legal system essentially kidnap Maya.

As the system fails and fails and fails everyone (except profits because OBV) in this situation, mom loses hope and commits suicide, seeing that as the only way to break the system's hold on her family. The medical team then view this suicide as verification that mom was nuts (as opposed to tortured) and exchange texts saying as much (doctors are never wrong OBV) as the family is making burial arrangements.

First, I knew mom was high IQ the second they described her primarily by her intensity. Also E. Europeans are more direct which doesn't help, but clearly high IQ. If you're familiar with high IQ, you can see it from space. It's very obvious once you know the pattern. 

High IQ is a type of neurodiversity that gets overlooked a lot and it is NOT an easy thing to deal with because if you don't develop the external markers of authority and credibility to match it, you get what happened to Maya's mom. The world isn't used to auto-didactics and responds poorly to anyone who can learn outside accepted channels.

If you keep reading the article I linked... bingo, Maya is high IQ. Like, high IQ enough to get into the fancy programs out there for gifted kids. The programs that Mark Zuckerberg got into. That's pretty up there even among high IQ folks.

Now, generally high IQ runs in families. So I feel pretty confident in saying we had a smart mom from a culture with a very different interpersonal communication style who couldn't understand why the fuck the hospital was a bunch of nightmare monsters, and when she bluntly tried to get them to course correct, they brutally assaulted her and her child.

But here's the rub, doctors have a hard time believing anyone is as smart or smarter than them. Particularly women. So if you get bossy and use the big words, if you tell them what to do because you know your kid's or your rare disease better than 99% of the people in health care, you will get punished in my experience. 

In American culture, women are not allowed to be smart and competent without credentials or some other source of power.

Even from other women. Women can absolutely be as sexist as men, and when they're working in a sexist and racist framework like medicine, they don't always rise above for a variety of reasons.

You must never look smart. You need to dumb it down. Everything must be their idea, not yours. Especially if you're a woman or a mom. You risk poor care and the case of Maya is a particularly egregious example. 

Although, it sounds like Beatta did work in the medical field, so I'm not clear on how John Hopkins jumped to the conclusions they did about Maya's case. It seems they failed to register mom was officially allowed to know things.

You know, even I was sweating my kid's medical care at times as we tried to figure out what was going on because I know how fucked up the system is and how little power I have. 

I remember well the time years ago when I happened to mention I'd just had pancreatitis to the ped and was subsequently quizzed about how much alcohol I drank to assess whether or not my child was safe at home. One offhand comment and I absolutely triggered a child welfare screening that fortunately, didn't cause any issues. 

(For those who don't know, I have never drank. I have literally never been drunk. The supposed pancreatitis was yet another gift from the tumors medicine failed to diagnosis for years. Oh hey, I found another potential danger of delayed diagnosis...looking like an addict to pediatricians. Thanks, Medicine!) 

We aren't at the same level of risk as Maya's family--we're not going to ERs, we're not dealing with heavy duty pain treatments which helps, but with this latest round of medical wtf I still did my best to tread cautiously. 

In our case, we started with a tainted diagnosis...Lyme disease is ripe for all sorts of negative perceptions. It's considered pretty woo from medicine's point of view, especially if symptoms persist after treatment. Knowing that, I did my best to present well to doctors, was quick to establish we weren't woo, focused on objective, verifiable symptoms, and was careful about what I said overall.

Even despite my caution, we had some occasions where we triggered suspicion. I could see it in their tone, their body language, the way they spoke to me. 

They penalized Maya for seeing 30+ doctors. Well, we have gone through four hospital systems now and multiple second opinions across several specialties. We are up to at least 20+ doctors at this point. We do get quizzed about it at times. We are triggering some side eye. Even though part of the bouncing around is because there are literally zero specialists for what we need in some of the systems. 

They've tried to put us with adult specialists at times and those docs were all 'nope, no kids' which just added more appointments. Just getting care for some things is really difficult and we have no choice but to bounce around. We wouldn't otherwise. 

Rare disease racks up doctor appointments like you wouldn't believe. Rare disease that spans multiple body systems...that's a fucking full time job. It's appointments all day every day more often than you would think. The fact the medical system has formally weaponized the number of appointments and made it canon for Munchausen's tells me medicine doesn't really understand what it takes to get diagnosed with anything let alone rare disease. 

So if you have time, money, and an understanding of science and how medicine works and you know you or your kid have a medical issue that needs to get diagnosed or needs specific care...well, congratulations, the system is designed to label you with Munchausen's or Factitious Disorder. Brilliant!

And here my kid is with a rare disease now too. Fortunately, we're doing okay with the side eye. I'm able to effectively explain things to assuage any concerns. It helps that we're finally unearthing the actual problem and there are a lot of objective markers of an issue and we're not getting into invasive treatments or needing to be hospitalized (which would be a bigger red flag). 

Ha. We even ran away from infusions. We are actively trying to get out of the system whenever possible. I am trying to give my kid a life that doesn't revolve around medicine.

But God forbid we ever end up in the ER or the hospital with me trying to explain her stuff. They might think I'm the problem just like they decided Beatta was.

There but for the grace of God go any of us.

I can't imagine how awful it was to go through what Beatta and her family endured. I am sending them all my love. But I also know, they are far from alone. 

Who watches the doctors???? Who prevents the hospitals from abusing people???? Who reminds doctors rare disease is real???? When will medicine know what patients know????

Purging and Dragging

 I think we have covid again, but I'm not sure. Live in parent came home sick and my head has been banging and my GI tract has been purging ever since and my bones and organs are on fire. If I just had the stomach stuff, I wouldn't think Covid, but the pain and aggravation of all my structural weak spots is very Covid.

The teen is grappling with it now. Fever of 102.

We're all dragging.

So I've been forced to take some sick days and I've been watching the news.

You did see that nuclear plant is set to blow? Russia sabotaged it. I was surprised they didn't try harder to muddy the waters on who did what but perhaps that wasn't possible. But they haven't blown it yet. Wonder what they're waiting for?

It is interesting how slow the timing of war is. I mentioned that plant months ago. War moves way slower than viruses. You can't set any watches by it like you could covid's doubling rate.

Now we have a potential coup. Interesting. I don't know wtf is going on. I don't think anyone does really. Maybe not even Putin. War is a lot of you know something big happened but you have no idea what.

However, it's been pretty obvious that the Russians have a lot of infighting. I'm guessing the Wagner group got fed up by being attacked by their own side and lost their shit about it.

There's one camp of thought that thinks this was all orchestrated to flush out traitors in the ranks. In which case, we should see some polonium poisonings, murder suicides, and falling out of windows shortly. Although, this would be an outcome no matter the root cause, because whatever the true intent, this would be an event that reveals loyalties and disloyalties either way.

I like Heather Cox Richardson's point from her newsletter this morning:

"U.S. observers don’t appear to know what to make of this development yet, although I have not read anyone who thinks this is the end of it (among other things, Putin has not been seen today). What is crystal clear, though, is that the ability of Prigozhin’s forces to move apparently effortlessly hundreds of miles through Russia toward Moscow without any significant resistance illustrates that Putin’s hold over Russia is no longer secure."

This gets to something I've thought about since the beginning. Part of what's happening with this conflict is a renegotiation of nuclear doctrine for an increasingly multi-polar world. 

If Putin dropped a nuke on Ukraine, Cold War era nuclear doctrine would have us go straight to MAD (mutual assured destruction), but if it's one nuke, do you need MAD? Especially if the people giving the orders can't control their own border or interior? 

No one wants to go nuclear except Russia. So MAD seems to be overkill here. Why not just send teams into Russia and cut the many heads of the hydra off? 

I'm guessing if Putin crosses the line, we'll be at his doorstep and that of his cronies and summarily remove them from power to prevent a global nuclear exchange. We know where he is, where his enablers are, and that does the least harm and the most good. I don't think gaining global or NATO consensus to do that will be difficult.

Putin has such a weak position in many ways, that I'm less concerned about a planet wide nuclear exchange than I would be otherwise. There are options beyond nukes. Ukraine though, Ukraine I worry about. They are in the crosshairs.

Milestones

 

The swelling in my foot has gone down enough that the gap between my big toe and second toe has begun to make an appearance again. It's not just from the surgery, but from the neuroma too. Meaning it's a major and exciting sign of progress (for me) and I'm really hoping my normal biomechanics reassert themselves with time. 

I will say, I'm a little surprised at how uncomfortable walking can still be, but I also know that the deep healing happens last and I probably won't be fully done recovering for months yet. (I can't tell if my body is slow or if the patient information is overly optimistic, but I always find that full recovery after surgery takes way longer than advertised.)

The asthma is still behaving. It's there and I take an inhaler if it's too edgy, but it's not a raging asshole. I don't know if this will continue or not. I don't know why it happened either. We've tried eliminating meds several times in the past and I've never been able to do it.

Aside from aging changing my hormones, the other thing that changed is that Ozempic seemed to finally dropped my ESR and CRP levels to normal for the first time in my life. There is some noise in the medical literature that asthma either seems to cause higher CRP or that high levels correlate to more active asthma but it doesn't read like it's been settled to me. It's an intriguing theory though. Perhaps now that my systemic inflammation is gone, it's harder for the asthma to Hulk out?

Interesting to think that PCOS, which is known for causing higher CRP and ESR levels, could have been egging the asthma on this whole time.

But then I've been on Ozempic for a while and all I had were problems last summer. I can't really draw any solid conclusions but I WONDER SO MUCH.

Unfortunately, I doubt how it's happening will get sorted out in my lifetime.

My hip continues to be an asshole. OMG. It just won't fucking STOP. The steroid injection helped but nowhere near as much as I'd hoped. And I thought it was cold weather that was the main problem. I'm learning now that's not true. We went grocery shopping and I had to go sit in the car. I started out fine, then wham! Pain pain pain. I couldn't walk anymore. Instead of my foot causing problems, all the drama has transferred to the hip. Greeeeeat.

So some milestones to the better, some to the worse. 

Rare Disease Dystopia by the Numbers

 

They say 10% of Americans have rare disease. That's 30+ million people.

They say 72% of rare diseases are genetic. (Some sources say 80%.)

But hardly anyone gets referred to geneticists.

Almost no one gets genetic testing.

And there are less than 1300 geneticists in the US.

(Which, note it's going down, not up. In 2017 there were more than 1500. )

For whatever is 72% of 30+ million.

That's 10,000-15,000 patients per geneticist. 

So me and my kid, we are left to bounce through the system...specialist after specialist after specialist. Everything is treated piece meal. There's no unifying diagnosis and very little unified care despite peds' attempts to do so.

Because, ultimately, the resources to provide care don't exist.

By design.

There's no way (yet)  to quickly and credibly find a genetic issue...when that would be the most cost effective and time saving option. 

Imagine finding 72% of rare disease UP FRONT.

Where are the insurance companies on this? It's costing them a fortune to have all these appointments, tests, and treatments for my kid x two years now. And me x my whole life. This ass-backwards system is really expensive, and if rare disease is really 10% of people, that's a big expense on the bottom line. You don't want 10% of your cost centers bouncing chaotically through the medical system. 

 I'm guessing the vast majority of patients give up and that's where the costs are saved...just trapping patients in the bullshit of medicine to slow their roll. It's not like doctors are going to spot rare disease any time soon. The diagnostic delay has been stuck at a span of 5-30 years for what? Decades now?  The testing has improved, the diagnostic rate has not.

I'm accursedly fortunate in that I know this circus and I'm in a position to perform non-stop. That's what makes the difference for me and my kid.

Sometimes I wonder if I'll get to see anyone, literally anyone in the medical industrial complex, become aware of how they've been trained to ignore rare disease.

I wonder if we'll ever see an era where there's something like a zebra metric, which to my mind would work something like this...

If rare disease is ~10% of the population, then a physician or hospital should have a rare disease diagnosis rate of X% across all the patients they see.

(I can't give a specific percentage because there's some fancy math that needs to be done with the 10% to make a meaningful metric and I'm too dumb to do it. Also, likely lacking the data I'd need to do a good job with it anyway. But the point stands that there's a mathematical extrapolation that could be made here and math works even when we don't know the exact numbers. That's the whole point of X across all of math. Side bar to the side bar: What's interesting to me is that most medical math is used to exclude as opposed to include, there's an exclusion bias, not an inclusion one. Yet all that means is they miss people. We need more balanced math. But I digress.)

If a provider or institution is rarely finding rare disease ever...that should be flagged and then compared across the census of the other providers in the practice/other hospital systems to ensure there's no data anomaly--that somehow they just don't have those folks in the census, you can get weird distributions,  X% won't always spread out evenly--and if not, they should receive training to help them know when to suspect rare disease.

The training will take less than a minute. It is actually really that simple. Promise. 

Here it is:

Mission statement: A specific rare disease is rare, but diagnosis of rare disease in the aggregate should be common. There are lots of zebras in the herd, they just all have different stripes.

When the basic labs/imaging are normal, when the next level of labs/imaging are normal, the answer is NOT blame it on weight and depression, it's to go through all the levels of testing and imaging looking for rare disease. Especially if there are any objective markers of disease...fevers, abnormal labs etc... 

Core value: We do not give up on patients with objective abnormalities! Ever!

At some point, you need to consciously look for rare disease, not double down on ignoring its existence. Stop excluding, start including.

If you find nothing and the patient comes back worse at a later date, you repeat the workup (if enough time has passed since the last one) as patients can feel off long before things are clinically obvious.

In the lag between a clear clinical signal that reveals the diagnosis and the symptoms a patient struggles with, treat symptoms and continue to support the patient. Make sure patients know you're not giving up and are continuing to monitor their case. Refer as appropriate to other specialties.

Weight and mental health should be diagnoses of last resort, not first. Weight and mental health can be 'doesn't hurt to try' parallel therapeutic targets, but cannot be used to automatically exclude other issues unless a complete work up has been done, including ruling out rare disease. 

It's that simple.

Less than sixty seconds of reading and you can do a better job than all of the doctors we've ever worked with here. Even the nice, super smart ones. Even the ones at the world famous medical institutions. It's not the people, it's the training and the process, both of which are designed to deny access to science. Where people carry blame is in refusing to see that and act.

Here's a real life case I ran across where medicine failed to find the diagnosis, actually just gave up, refused to think...

Woman has abnormal lab values and lots of symptoms.

Lives in a major US city. Absolutely huge. Doctors everywhere. 

But she can't get diagnosed.

As things escalate, she goes to the ER where the abnormal lab values are dismissed as incidental temporary values and there's no recognition that they've been persisting for months and it's worse now. They fail to do anything, fail to actually synthesize the medical context, and she's discharged with no additional care. 

Fortunately, much like my liver tumors, any risk of death is slow moving so she has some time to keep looking for help.

Woman finally goes out of state to another hospital system. Even though she lives somewhere that should have the resources to diagnose her. The testing doesn't have super hard to find equipment.

And that hospital system finally runs the next level of tests and finds the problem. Tests than anyone could run. Anyone anywhere. But how many doctors refused to lift a finger and do it where she lived? A lot. To the point where she had to leave the state to find someone who would leverage the science on her behalf instead of fucking gatekeeping it.

This is why the core value of my spiffy little training is so important. 

Core value: We do not give up on patients with objective abnormalities! Ever!

Maybe with AI in the mix, insurance companies will find a way to penalize doctors who keep missing diagnoses like this. Maybe we can start mapping the diagnostic journey at scale and find the common bottlenecks and identify who perpetuates them. Maybe the whole system will see the light and realize this bullshit is costing them a fucking fortune, has a massive opportunity cost, and harms all of society.

I can dream...

PS: I'd also introduce a 'zebra screening' for psychiatry and psychology requiring providers to document and communicate with referring providers that they can't find a mental health cause of the symptoms. Like, actively give the case back to doctors, put it formally back on their plate as an impetus to push them to providing the next level of diagnostic workup. 

(As for the woman's diagnosis, it's not my story to share but ALSO the what isn't important, it's the malfunction of the medical system's architecture and flow through that matters. None of that should happen for any diagnosis. Yet the whole system glitches like this all. the. fucking. time.)

Five Stars

Saw the ortho and got everything on a silver platter. I'm a little verklempt. That doesn't happen often.

I swear, I'm in the golden years of medical care over here. A sweet spot of too old to outright dismiss, too old to blame it all on weight (for the most part), too old to say it's anxiety (also for the most part), but too young to give up on.

In my younger decades, I'd say about 5% of my appointments involved anyone actually listening to me and doing something about it. Sometimes even less than that.

Now? It's like 50-60%. I still get bullshit, but I also have times when the clouds part and the angels sing and medicine actually lifts a finger.

Aside from looking like their Meemaw, I also think I communicate more effectively and I'm (sometimes) better about just getting my ass into another doctor. More doctors, more appointments really seems to be key (the system does its best to make it unaffordable to get action as a core value, you have to pay extra in terms of time and money to get anywhere--I have fought that reality a lot because it shouldn't be true, but anymore it's the second+ opinion that provides care, not the first). 

Plus, some stuff is fairly normal now. For instance, Morton's Neuroma is pretty common. My personal health context with it is a bit weird, but the neuroma itself is very routine. My issues fit into the medical system better these days. It's easier when they can recognize what your body is doing.

Ortho was one of those times where it all came together. Steroid injection, right there in the office. Better anti-inflammatories called into the pharmacy. MRI ordered. Bam bam bam! Knocking it out of the park in one swing.

Every patient should be so lucky.

I will note that the ortho exam made my hip fail though. That's a new data point and it's not right. It fits with the way PT is aggravating though. Something's just not right. This isn't something I can leg lift my way out of anymore.

And the grapefruit is doing...something. It's...gaining mass??? Feeling more solid??? Something. I'm leery of letting that fester too long given how dynamic it's being. 

It's not in a great diagnostic area though. As far as I can tell, it's located in an anatomical desert, a place with no major disease history that medicine has ever recorded. Meaning, there's no clear cut specialist for it. I've been palpating all the anatomical landmarks trying to zero in on what it might be, who I need to see, and nada. It's the Bermuda Triangle of medical fuckery, which probably means it's a secondary manifestation of the actual problem or a really random tumor or I'm totally crazy...take your pick.

OH! And I have a new PT. The guy I had is gone and not coming back. Interesting. We do a lot of PT over here and have been at that clinic a ton over the last few years. I've noticed some...patterns on the interpersonal side in terms of therapists who aren't there anymore. Office politics are a bitch...

New PT is more pleasant and able to engage with me without negging, but I think the original PT left a parting shot in the notes somewhere--bad intel or outright passive aggressive bullshit. The overall vibe is still off. But whatever. I'm almost done. 

So, in conclusion, five stars to proactive orthos. Yay for losing annoying PTs. And here's hoping I'm on the way to reducing the pain, increasing mobility*, and that the grapefruit is just some stupid lipoma or something really anti-climatic to where we all look like this when we find out what it is:

*After chasing down the dog and hauling water like an ox, I've been sidelined. Activity is disabling right now. Sure, I can walk. I can do okay. But anymore I can't do a lot if I want to be mobile consistently. My joints and soft tissue have no tolerance. As I explained to the ortho, walking in and out of that appointment was it for me that day. Standing to check in was too much.** Yes, whatever is going on has progressed that much of late.

**Which, side rant...by definition some specialties have patients with mobility issues. Podiatry. Orthopedics. PT. Like, can we not get some chairs and benches along the aisle where people wait to check in??? Or post a sign to offer patients who can't stand or move well a process they can invoke so there's a way for them to sit???? This is such a bizarre blind spot of medicine.

On Trees and Barking: How to Select the Right Tree and Get Diagnosed

 I have a close friend struggling with some gnarly health issues and they've been banging their head against the wall of the same specialty for a while now with nothing to show for it.

My advice to them was to look at what other body system or issue could cause their symptoms as clearly the specialty they were seeing wasn't helping. I have found, through bitter experience, that when you've thoroughly tested one system and come up empty but still have symptoms, it means you're looking at the wrong body system and seeing the wrong specialty.

Don't keep running the same tests and seeing the same specialty if you're coming up empty. Think bigger. Talk to patients. Try Google searches combining your most unique, specific symptoms with other organs and body systems.

For example: Can skin/heart/liver/thyroid etc... disease cause XYZ?  Or, skin/heart/liver/thyroid etc... disease + XYZ symptoms.  

This ended up being relevant for the teen as well, but it took us longer to figure it out because her big symptom is also considered pretty common...it didn't become specific until we went through a bunch of different medications and even then it was confusing because medicine has a long tradition of denying that this issue is abnormal, there's a lot of cultural bias with it. 

Things had to get so extra that even the doctors were going WTF? Also, they did screen for the most common disorders and we erroneously thought that we'd ruled it all out...we didn't know about other, less common categories of dysfunction and testing to even ask for them. We didn't know they hadn't looked at the super rare shit. (We were way beyond my experience and education on this one. It even took me a while to catch on. Believe it or not, we ended up in an area of medicine that wasn't in the premed classes I took back in ancient times. I wasn't pleased to discover that a lot of this stuff had been missing. )

Don't assume because your symptoms look like they're in one body system, that they're coming from that same body system. They might not be. And make sure you understand the full menu of testing options and the full spectrum of disorders. Basic screenings are basic. Intermediate screenings are intermediate.

 You're probably not getting all the testing possible. You access it in phases. One round of testing doesn't rule out everything. There's always another level of testing. Always. What is amazing to me is how many doctors see normal results from the basic or intermediate level testing and go 'welp, nothing else to see here, you're fine, go home' instead of coming to the conclusion that it's time to go zebra hunting. 

You have GI symptoms but the ultrasound is clear? You're fine, go home.

You have GI symptoms but the CT is clear? You're fine, go home.

You have new tumors on CT, a fever, and can't eat? You're fine, go home.

I've done this dance a lot. Now my kid has too. 

I mean, when there's a fire, the fire department doesn't throw some water on it and call it done even though the fire keeps burning. They keep going. They figure out why the water isn't working. They look at what substances might be on fire. Doctors give up though. They don't care what's on fire. They threw a small, wholly inadequate pail of water on you and whatever is still on fire after that is pronounced fine. 

YOU the patient have to see all the blindspots where horses and zebras hide and make sure to point them out to doctors. Patients can't rely on doctors to see anything at all.

I Believed

Man. We have had a long, hard row to hoe with the teen. If you go back far enough into the archives, you'll see where she starts to have problems. I've always tried to be careful to protect her privacy while also documenting the shape and flow of our experience. But it blows my mind that it's all been mentioned here, from start to finish.

It would have been so easy to fail her. To dismiss her. To deny her symptoms.

But.

I'd been there, done that as a kid. 

At twelve I had problems breathing. I knew it was asthma. Apparently, that was an offensive thing to admit to knowing so a lot of doctors spent a lot of time blowing me off. Even today, it's weirdly difficult to get care.

My parents would ask the doctors, in front of me mind you, if I "just needed a psychiatrist."

My family called me a hypochondriac. My family culture was very much one where you weren't allowed to be sick, and if you were, you were faking it. They particularly did that to women. They'd grab the medicine bottles and make fun of you and everyone would laugh. 

By the time I was sixteen, I made and drove to all my doctor appointments. By myself. Often while in respiratory distress. 

When I had an asthma attack in gym class, the kids laughed at me, the teacher laughed at me and then gave me a zero for the day's workout, and then the nurse wouldn't give me my inhaler. It was so egregious and I somehow conveyed my horror so eloquently that my doctor immediately gave me a doctor's note excusing me from gym for the rest of high school.

My own pediatrician, when I had an intractable asthma episode that wouldn't resolve, asked me if had "boy trouble." Jesus. No. I want to fucking breathe. I'm upset I can't breathe and I've been fighting for weeks now. I'm exhausted. When do you think I have time or energy to give a shit about boys? They eventually admitted me to the hospital for round the clock nebs.

When we traveled overseas and I invariably reacted poorly to the complete lack of any air quality standards whatsoever, not only was I denied medical care, I was denied any care at all. I had to drag my sorry wheezing ass for miles to go to third world pharmacies for what few meds they had. Alone. At one point, I begged my parents to please just send me home so I could go to the doctor. Nope. 

So when my kid got older and better able to articulate what was wrong in her body, I knew I wasn't gong to do any of that to her.

But I was surprised at how difficult it was, how deep the conditioning went. I did wonder if she had a psych issue. I did wonder if maybe she was malingering. Or not taking her meds correctly. I was horrified that I thought that. I think it shows how deep the deny, dismiss, delay, deflect culture goes. We are taught to minimize illness to the point of denial. All of us. 

Thankfully, her body threw a lot of concrete signals. Fever. Test results. Other non stop malfunctions in very tangible ways. The fact that, for some of it, she'd been like this as a toddler, when she was too young to fake it. That the school system had put her in Early Intervention due to her motor deficits (which in my state you do not just get services, they are very stingy about it, they work very hard to disqualify you). Like, it wasn't just me saying it. It was just none of it made sense. None of it explained everything.

But focusing on the objective tangibles helped me stand strong, but I still didn't understand what was wrong. It was frustrating. And she was a teen so there were times when she acted her age. Where it would have been very easy to write her off as being dramatic.

But ultimately, I decided I had to believe her, and if she said she didn't feel good, then I had a duty to make the doctor appointments. I wanted her to at least feel like her parents were there for her, no matter what the diagnosis was. Even if it was nothing at all. I wanted her to know she could trust us.

We spent a long time making no progress. She was dismissed a lot. Growing pains. Anxiety. This just happens sometimes. It's normal. Why are you here?

We started this latest round of trying to figure out her issues in 2019. Almost four years of no progress at all. It was hard to not wonder if it really was nothing. 

But I decided to believe her. We didn't give up. And now we finally know a lot of why she's having the problems she's having. There's no cure, there's very little treatment, there is a lot of misery with the symptoms, and we really need genetics to show up now and determine if there's a syndrome beyond this diagnosis, but we have a name. A name causing the worst of the symptoms. 

Knowing your demon's name is half the battle. When science has the fix, she'll be able to access it. That's the other half of the battle. 

She won't be left to wonder whether maybe she really is just anxious. Doctors won't be able to dismiss her. They'll have to listen to her, and if they don't, she'll never have to worry that maybe they're right. She'll know they're dumbasses and thank you, next. She'll have a certainty and a direction that will let her see through the bullshit. It's not enough, but it's a solid assist.

I believed her, but I still can't quite believe we finally figured it out. It doesn't feel real still.

You Can't Trust Grapefruits

 I realized I've said a lot of things about the grapefruit, things that are contradictory.

It's all true. But some of it may be wrong. I don't have enough testing and imaging to know which end is up yet so I think everything at least once. There's no orientation, just trying to guess WTF went off the rails now.

So yes. I am all over the place. Trying to problem solve all by myself without a good work up will do that. 

And yes, I am still trying to cut out the doctor appointments this summer. I haven't been as successful as I'd hoped. My hip has been without mercy lately and that's really driving me forward at the moment and the teen's stuff is going to need a biopsy to rule out some things, but it is overall less. What is endless is my ability to bitch. So it will never sound like less.

In other news...my foot is pissed. It has decided it's unhappy with the dog hunting hike. 

Also, a few days ago I hauled about 700 lbs of water by hand in 2-gallon buckets lugged across several acres as there's a drought and we have to nurse the baby fruit and nut trees through it. That about killed me. 99% of my flesh and bones were already heavy metal screaming a song of pain from that. The dog chase just added a shrieking guitar solo.

Yes. I am still fat despite all that exercise. No. I don't understand how. However, I'm getting kind of strong over here anymore.

Nor do I understand how my foot makes the distinction between water hauling and hiking. I think it makes a difference that I'm walking on grass vs. asphalt. Or it's all a contributing factor to the current irritation.

Anyway, between the water hauling and the escaped dog chasing, I stayed off my feet today and I WORKED! Like really worked. I did things that weren't about my fucked up family or anyone's health! I got to remember I'm good at my job! I'd forgotten! Exciting stuff!

Chaos Reigns Supreme

I'm tired. The stepparent's dog managed to escape today and I had an unplanned early morning pajama, boobs-a-bobbing, hike of two miles. He's done his best to escape and die this whole time. We've done our best to prevent that but he's especially stubborn and today he found a weakness in the system and bolted.

I eventually found the little fucker. The damn dog is home and probably riddled with ticks, which I'm sure you can understand we're a little hypervigilant about ticks here. Once I've recovered a bit--I was already hurting from all the gardening I did the day before--I'll work on dealing with the tick risk.

On the upside, that was my first big hike since my foot surgery and I did okay. I felt it. I'd prefer to not be hiking yet, but it went okay. Kind of.

My parent is out of jail and completely unhinged. So that's going about as well as can be expected. The biggest problem is they can put on a good act and they know all about dementia and dementia testing so they're going to have to be pretty far gone before they can get diagnosed. Also, they're combative and paranoid. It's difficult.

Right now, I'm waiting for a hospitalization where I can invoke social services and accelerate things that way. I am not claiming that's the correct or best approach, just it's what I think I can make work. And you're right, they may not end up in the hospital, but also, they do have a decent number of ER visits because they fall and break bones quite a bit when they're high. 

I'm actually surprised they haven't accidentally killed themselves yet. Somehow they don't hit their head or have anything major beyond needing some joint replacements here and there due to bad falls. The force of the universe clearly wants them to live to spew dysfunction and drama faster than the speed of light.

PT is continuing to be awful. I don't know what happened but the PT aide didn't know my history and balked and scolded and argued when I refused to do certain things, things I'd told the PT were a no go at the intake appointment. Things for my foot, my spine. You'd think recent surgery would be something they wouldn't argue about. You would be wrong. 

I'm trying to just smile my way through it and finish it. I'll be halfway through this week so it seems silly to switch therapists. I just want to be done. I don't want to expend any more effort on stupid shit. I'm very burned out. It's taken a lot of energy to deal with my parents and my kid and my foot the last few months. However, if I have to keep actively preventing them from injuring me at each appointment, I will work harder to convince myself it's worth it to ask for someone new. 

Either way, I will be making the clinic aware of my experience...hopefully someone there will care enough and have the bandwidth to address it.

I'm so tired of dealing with everyone's dysfunction. Maybe it's me? Maybe I am doing it all wrong. Maybe I should just let them destroy my spine and foot. They're the ones with the degrees. I have to be stupid, right? It has to be me? Maybe I should just let the dog run loose and die in the woods since he's so hell bent on it. Maybe my parent is the sane one and I should be in jail.

Actually, jail sounds lovely. Can I go to jail? No one can reach me. Most decisions made for me. No expectation that I do anything for anyone.  Where do I sign up? How much crime do I have to do?

And then...AND THEN a gnat flew in my ear and it either made me bleed or it smashed itself against my ear drum until it splattered its guts out. There was blood. Mine or theirs, I don't know. But blood. From my ear. And now I'm dizzy. This has happened before (minus the blood) so I actually know a drill here. I'll be dizzy for a while and eventually the damn thing will breakdown enough that it'll stop.

But...really?

If you need me, I'll be online researching where the best jails are. I cannot with this shit.

Apocalypse Air

 A rare real time post! Woo! 

I am still off all asthma meds. It's been a while and I've been pretty stable. The start was a bit rough, but I have very minor asthma symptoms now. I had to use albuterol a few times and that was enough to put the asthma back in the box. No need for anything else. A world record.

So here I am inhaling the worst air quality my lungs have ever seen and I'm fine????

I have no idea what this woo is. We'll see what happens.

Crazy.

My asthma started with puberty, maybe it ends at menopause? But am I even in menopause????

Moms Are Medicine, Patients Are Providers (Results from Mayo)

 I don't like world class name brand hospital systems as a general rule. I have one in my backyard. They do a lot of advertising. And they treat their patients like shit. Plus, they're the most expensive system in the area and they have the most predatory financial practices.

Within the local community, I'd say there's an 80/20 split (Note: among those who talk about it). 80% of us avoid this system. 20% have a good experience. You'd never know that so many locals avoided this place from the ads though. You'd think I was bananas all by myself. Well apparently there's a bunch of us (ba dum bum...I'll be here all week).

So naturally my kid's blood went to Mayo and what did Mayo do?


The wrong test.

The completely wrong test.

Am I surprised? Nope.

Mayo is the same flavor of PR medicine as the place here. It's all an act.

Anyone who wants to go to Mayo or wherever for their health, get into the patient groups and find out if the place is any good for your situation. You have the ability to find the actual good doctors and good clinics now. Don't listen to the PR, listen to the patients.

I didn't see the Mayo results until we were at the follow up appointment and the teen asked me if they'd come in while we were waiting for them to call us back. So I checked the system and found them a few minutes before we saw the doctor aaaaand they were normal. My heart sank. We had a ton of abnormal results from the other labs, but Mayo was supposed to be the super specific test. And it was normal. Another dead end. No answers yet again.

I did notice a lot of language around cancer and leukemia in the results, though which I thought was weird.

Turns out, they tested the teen for cancer by mistake. With super specialized lab stuff that most hospitals (apparently) don't have. A total waste of time and equipment. Thanks Mayo!

But I'm pleased to say, there's no sign of cancer.

However, the rest of the labs were "so severely abnormal" per the specialist that we do now have an initial diagnosis. We'll repeat the Mayo lab later this year and see if it adds any clarity...potentially it could change the diagnosis as we'll have more precise data.

I know you may be wondering what it was, but I'm going to sit with this a bit and think about what I want to say and where the line is on privacy for my kid on this. Unfortunately, it's rare and that means it's identifying so I have to think about navigating that. Also, I'm still absorbing this, taking it all in. And again, it may change materially as we finally get the Mayo testing done. I don't want to jump the gun either.

But this definitely plays into all the issues the teen has been having. It likely explains some of the long covid symptoms, why the Lyme was so hard on her. Her underlying system is malfunctioning and it makes her vulnerable.

I also still have the same questions from my previous post...

Why is a random mom the one figuring this out?

Why is it ME, another random mom, pushing the doctors to see what is obvious to those of us without medical degrees?

Why is it patients helping us with the nuances? Helping us navigate the science?

Why don't doctors think deeply and broadly enough? Why is the cross specialty functionality so poor? This is a consistent issue. It shouldn't be my brain or my friends' brains putting the puzzle together...it should be theirs. Silo-ing the science and writing patients off as young/anxious/female/fat isn't effective no matter how nice they are about it (which 90% of the teen's docs have been sincere and well intentioned, but that, unfortunately, doesn't have any correlation with diagnostic accuracy. Nor does the inverse...rude, abrasive doctors aren't any better at figuring stuff out either. You know what gets to the diagnosis? Testing and imaging.)

Why does the diagnostic process take years when the tests with the longest lead times take a few months tops and most take way less? We could have data on pretty much anything from a few hours to a few months. Meanwhile rare and chronic disease patients are still suffering for years, if not decades, before they get diagnosed. You know what gets to the diagnosis faster? Testing and imaging faster. 

The excessively long timeline isn't from the testing. It's from the doctors. It's from the insurance company. It's systemic. It's on purpose. It's a decision that patients weren't informed about and didn't consent to. It's harming patients and yet, no one blinks. No one fucking blinks. 

This has to change. Yesterday. It's unacceptable.

Do you know what I see doctors doing online though? They are either bitching about patients, insisting that they are dumb/fat/anxious OR hawking their own medical products in an effort to monetize the systemic medical neglect. I have yet to find any discourse about fixing the diagnostic delays or cognitive errors. If a patient dares to do imaging or testing out of pocket...the doctors online denigrate that patient like fucking piranhas. They're shameless.

Now, all that said, my kid was a tough case. The initial symptoms manifested in the body system that wasn't causing the problem so we ended up in all the wrong specialties and then the big clue was easily dismissed because of a major default bias across society, not just medicine. So most of medicine gets a pass from me on this one.

I'm just irritated by how often I find a complete lack of true expertise and strong lateral logic skills among care providers. How often they tell you you're fine when they can't even discern whether or not you should see someone from a different specialty. Like, all they know is the smooth walls of their windowless silo but they'll sit there and insist you're completely fine. 

I promise you, I'm stupid as fuck. I am nothing special. I'm lucky if I can find my pants. All I do is walk into rooms and forget why I'm there. Ever since, Covid, I have to use alarm reminders for everything because I've lost all sense of time. On the spectrum of cognitive function, I'm closer to dementia than I am to being Einstein. I literally ran around using the wrong medical term for the teen's stuff like a loon for weeks. 

Yet here I am with my mom friends and other patients getting it done when doctors can't.

Why are moms and patients outperforming doctors? 

If insurance companies figure out that the big costs they can cut are all the doctor visits and just let the patients have at the testing and imaging with no more harm than what they do now...what happens to medicine then?

The Diagnosis Is Always in the Last Place You Look

Well.

Wow.

I think we are going to figure out half of my kid's problems.

I'm stunned. 

A miracle of having the exact right friend. It wasn't the doctors, it was my friend, a mom in the trenches, who found the right path for us. From just...life experience.

The testing is starting to come back now and it's abnormal.

We're now waiting on fancy pants extra sensitive testing that involves three hospital systems, massive bureaucratic confusion between systems, and blood travelling out of state for more insight.

It might still not be? Maybe?

I don't want to get anyone's hopes up and I've seen abnormal stuff end up being normal before.

But yeah. I think we found the thing. It's kind of bizarre because there's no family history that I'm aware of. My kid manages to have all new problems a lot lol and I'm often outclassed as a result. I don't have the bandwidth for all the medicine I really need to learn on top of everything else.

This overlaps with a lot of the post infection syndrome stuff that Infectious Diseases was trying to treat. The main symptom had us thinking it was one unrelated issue--for a lot of people it is just one thing unrelated to the rest of their health--but for my kid it affects everything. It wasn't just post treatment Lyme or Covid. 

Unfortunately, there aren't great treatment options. There are medications that help, but they have serious limitations and very narrow use cases. Long term, she will likely need surgery to address the most bothersome issues...but that will be tricky. We may have a hard time finding a surgeon.

I don't know. We'll see. But we barked up a tree and there was actually a zebra there. 

If not for my friend, medicine would've given up on us. If not for patients, we would've never found what to do next.

It wasn't the doctors who figured it out. It wasn't the doctors who optimized the treatment either.  It wasn't that the testing didn't exist or took years to run...we just never met a single doctor who thought to order it until WE figured it out. Why is that? Why is that such a consistent pattern? Why can't patients count on medicine?

I Discovered New Math for Old People

As my parents age and turn the insanity dial up to a quadrillion units of radioactivity, I am learning more about how money doesn't work in this civilization.

Both my husband and I worked at what this civilization considers a top tier employer with a highly rated retirement program and a very special unicorn known as a fully funded pension. Of course, I'm now self-employed so I'm out, but hubby is still there.

We duly attended all the presentations from the investment company several decades ago where we were told if we saved the 401k match that our money would grow by 8-10% each year, double every seven years, and we would be fine in retirement.

We were not told what the inflation rate was, how cost of living changes, inflation around medical costs, or that nursing home care costs would likely triple by the time we needed it.

We were not taught how to think. We were taught how to contribute. Key difference. And we had a big blind spot on this that took us forever to see past.

And the seven year doubling thing never really happened. 

We have good funds. Everyone thinks there must be a problem with the funds. There's not. We have top rated Vanguard funds. We have a top rated 401k plan according to independent third party experts. We even had a higher than average match for a while. Plus the unicorn pension.

And 8-10% isn't going to cut it. Especially when what you can save for retirement is capped at ~$27,000 (plus or minus) per person a year in the US.

Costs have no cap and are growing at an accelerated rate compared to investments.

If I can only save $5 a year, which is a fraction of my actual cost of living, but ALL my costs go up $5 every year, how do I not end up in the hole?

Let me say it louder...COSTS HAVE NO CAP BUT SAVINGS DO. You are starting already behind. By design.

For the record, right now inflation is at 6% and medical inflation is 2%. That's 8%. How is your 8-10% return on a fraction of what life actually costs now going to cover your golden years? It's not. And it hasn't.

However, despite my parents being endless wellsprings of fuckery, by some miracle (before the lonely heart scammer got to the one) they did have some retirement investments. They can afford their lifestyles, BUT they can't afford to get sick and die. And that's a problem. (After the lonely heart scammer...the one will be lucky to have anything at all.)

Watching them, my thesis has become: People can afford to retire, but they can't afford anything else.

My grandparents paid $3/k a month for nursing home care x 3 or 4 years. Now it's $10,000+ a year. (And costs vary by state, some states are way more expensive, some are even double or more.) I can't find any year on year stats for how much the nursing home costs go up, but let's extrapolate and say for me and my husband, it'll be $20,000 a month each which is $240,000 a year each or around $500,000 a year for us both.

Well, how long are people in nursing homes? The average is about 2 years BUT 20% of people will be in there for 5 years or more. (You would not believe the amount of digging I had to do to find that last bit...it's very well hidden to where it feels like it's on purpose.)

So an unlucky 20% will be spending more than a million dollars+ in nursing home care where costs are doubling if not tripling each decade, and on average, no one is even close to saving a million dollars for any of this. 

The system we have isn't working. Even if everyone did contribute, the math doesn't exist. The numbers are all fake. It's been marketing this whole time.

Oh sure...pay off your house etc etc etc. But yo, property taxes will easily be at least as much as the mortgage by the time we retire (if we get that far). The numbers just never work. You can't save enough for your lifestyle and healthcare costs with the existing system. You have to go beyond it to have a chance and you have to know that you need to do that at a very young age.

One thing I noticed among people my grandparents' ages is whether they saved well or not, everyone was scraping by on $1000 a month in the end. I would ask them about how much costs had gone up over time. I would ask how they saved, what they spent. And I realized inflation really does a number on you over time. You have to over save, over invest to beat it.

To get old and not be homeless, you need enough to cover day-to-day living expenses and some kind of lifestyle (doable-ish) and then huge chunks to cover medical and nursing home care (not so doable). 

I'm aware Medicaid Medicare etc... has some ability to cover some of the gaps, but I'll note that coverage is altitude sickness thin. There are nursing homes evicting patients and not taking state money because the reimbursements aren't enough. (A cursory Google search says nursing home profits are 3% or less so maybe the margins are that tight, I don't know. What I do see is they are grossly understaffed. They're not spending it on staffing.)

For the record, we didn't have today's internet to counter the magic math marketing and we had no clue what we were doing. You have to remember, there was no easy way to poke holes in stuff. You had to care enough to go to the library and get through finance books (I did try on occasion but died of boredom--the finance books that fit my brain didn't come out until this century) or look for an expert (didn't find one). You had to care enough to go above and beyond, and I'm sorry to say finance has never been a passion for us here. Which is unfortunate, but not uncommon.

Neither of us had parents capable of guiding us and we never found financial mentorship, so we flailed. We followed directions and in fact, we actually contributed the max and the result is we are outliers in that we did accrue some money BUT we can still only afford to retire with a very frugal lifestyle. We still can't afford to get sick or die. It didn't fix anything.

So the 401k thing was a bust. The marketing math was never real. 

I don't know if 2008 is to blame or some other factor, perhaps we were not just naive, but also particularly stupid somewhere, but none of the numbers ended up working the way they presented them to us.

Eventually we will go bankrupt. And so will the vast majority of everyone else. 

Now, I have always expected to go bankrupt because non retirement healthcare costs have math just as bad as retirement. We already can't afford all the medical care we need. And we're older, so the HSA and FSA stuff came in late for us similar to how people lost their pensions in the transition to 401ks. We never had a chance to build up a medical slush fund while we were young and 'healthy'. 

Also...did you know that amount you can contribute to the HSA is capped as well? You can't actually save in relation to your actual costs.  

Again, for those in the back....COSTS HAVE NO CAP BUT SAVINGS DO.

My insurance plan deductible is higher than what I'm allowed to save in the HSA. We are actually privileged enough to max out the HSA now. It's thousands and thousands of dollars. It's a mind boggling amount of money. And we still can't afford our healthcare outlay. It's not helping us. All that money and it doesn't do anything. It's criminal.

The HSA math was when I realized the game was rigged. We are given wholly inadequate tools, fed a line of bullshit about how the numbers work, and then are taught to blame ourselves when we fail.

So saving for retirement or even just healthcare isn't enough. You need to have additional assets like property or stocks, but those cost money and most people don't earn enough to do that. Most people don't earn enough to even max out their 401k contributions and still afford to live. The median wage for men in the US is $69k. For women $50k. Median household income is $67k which suggests median wages for women aren't really happening much...

Or you can leave the country, but other countries don't want sick people and healthcare is cheaper, but it still isn't cheap--monthly plan costs can still be quite high, comparable to the US even. (People always want to fight me when I say that, the myth of super cheap everything overseas is pervasive, but I assure you, I've looked at the costs. A lot. And I've been to many of the places people want to go.) 

 I see people touting things like 'my breast cancer care was only $10-20k overseas vs. $100k in the US' which isn't nothing, but it's not exactly cheap either. Especially when you see how little Americans are saving for retirement and how little we're allowed to put into our HSAs...if you have a lot of medical issues constantly draining your account, if your deductible leaves you with nothing in your HSA every year, you're never going to accrue the money for even 'cheap' medical care overseas.  (But you could charge it and then go bankrupt...)

The game is rigged. The numbers don't work. Even if you have money. We have the money to put into a 401k and an HSA and none of that will save us. It's not enough. 

All you can do is hope you're not that 20% living for years and years in a nursing home and play the odds that somehow in a sick world, you'll be healthy enough to not be expensive. 

The actual retirement plan for the vast majority of Americans isn't a 401k. It's hope and luck. Oh, and maybe Canada style assisted suicide.

Which, my pet theory on the boomers and this math is the system won't give them more money or do better by them. Boomers will be offered assisted suicide instead. It's cheaper than anything else and it's an additional profit center for the healthcare sector that also accelerates liquidation of any remaining financial assets back into the market*. 

*There's all sorts of predatory shit out there that will clean out elderly people to feed profits and leave their family nothing FYI.