Life Without Lungs

 So the asthma receded and then it came back. I had to start prednisone and it's not working. Nothing really is so I'm guessing something else is going on. Maybe I need a covid test? I don't feel sick, but the lack of response to any proactive measures is odd. (Update: tested. Not covid so far.)

My foot has been really bad. There are visible anatomical changes at this point as well. This latest podiatrist gave me a steroid injection (which seems to be helping) and set up an MRI. They also said the magic words, the ones that make my heart sing 'you grow a lot of stuff, let's make sure this isn't a growth.' 

Yes. Let's.

It's amazing how few doctors get that. How often they assume I'm fine. Sometimes I am fine, that's true, but it's also true that sometimes I'm really fucking weird and the outcome is better if we find the weirdness sooner than later. Can we just accelerate ruling out fuckery? Can we just do that?

It took me 8+ months to get an MRI of my foot. Ridiculous. And I suspect I'll have permanent damage in my foot as a result. It's not the doctors' fault per se. The system would've punished them if they'd ordered the MRI right off the bat. That's the part that needs to be napalmed to ash. 

Or I need to learn how to more clearly qualify for an MRI...although I thought I had. My story hasn't changed much between one no MRI appointment to the next yes MRI appointment so... Probably my strategic error was not just immediately scheduling a follow up after that first appointment to accelerate things. 

It's important to remember that follow ups are the gateway to more testing. You need to keep complaining. They need to see things aren't resolving. You've got to earn your testing.

It's just all your time and energy and money to play the game. That's all.

Anyway. I am not breathing super great at the moment and I took Benadryl to help me sleep last night after almost a week of no sleep because of my foot plus asthma so I'm groggy AF. And I'm trying to work. Good times, y'all. Good times.

I've got hubby on stand by for the stuff we're doing this week. Not sure I'm going to be able to drive and breathe.

Another One

 So I'm not sleeping much here. My spine is actually over its latest snit fit, but my foot thing is now beyond flared and hasn't let me sleep for over a week now. And then on top of that, my lungs decided to act up. I woke up at 2am with my foot and my lungs tag teaming me pretty hard.

Albuterol didn't help. By morning, I had to call hubby to come home and drive me and the teen to all the appointments for today. I did sleep some, but my breathing was too bad  and my sleep deficit too deep for it to be restorative. I woke up essentially drunk on low oxygen and successive days of very poor quality sleep.

I felt so dumb for having to call hubby like a big baby. However, at my appointment, my oxygen was lower than even I thought it would be, so my assessment of it being dangerous to drive was accurate.

Unfortunately, the next few infections that hit my lungs are going to damage things enough that these small attacks will become medical emergencies because they'll drop my oxygen too low. Right now, I can skate by, the oxygen drops don't get to 'go to the ER' level. They only flirt with it. However, that's not going to last as I accrue more damage that just drives it lower.

I am not looking forward to that future. 

Hubby did good though. He reminded me that I'd told him I wasn't always a good judge of how impaired I was and insisted on escorting me to my appointment. I'd planned to just lean on the wall and slide along to make it to where I needed to go, but he kept me upright. I then almost fell off the exam table--too groggy for balance--and he caught me.

I spent the rest of my functionality today getting an urgent appointment at a podiatrist. Any podiatrist. Anywhere. 

And taking a nap.

Thankfully the asthma eventually got over itself and let me go and that helped too. But I'm pretty in the hole energy wise right now. I'm planning to sleep as much as I can for tomorrow to try and recover somewhat.

This attack seems to be weather related. Again, pre covid, this asthma wouldn't have been an issue, but with covid seemingly in the mix, fucking with the substrate of my health, minor things are hitting me like major attacks. The only upside, recovery is at least still way faster compared to an actual major asthma attack.

As for my appointment...saw the hep. There was a lot of infantilizing minimization of things, which I wasn't happy about. This hep has been pretty good in the past, but was quite dismissive this time around. They're doing a whole training thing now. So I have to see the doc in training who then presents my case then I see the hep with the baby doc yadda yadda.

The thing is, I'm a pretty exciting patient for newbie docs. (Or at least it seems that way.) There's a lot of weird shit going on. I can end up pushing a lot of buttons. To where the baby docs run off to present my case convinced I'm infested with Martians and capable of shooting golden goose eggs out of my ass. In turn, that seems to cause the boss doctor to work extra hard to minimize my health issues and they are extra dismissive. 

To my face.

Suddenly, there's no room for me and my lived experience. I'm just a horse, a lowly horse and only ever a horse. I must be corralled away so the zebras can't corrupt the baby docs.

I've had this happen a few times now.

Oh, and the hep didn't remember pertinent details of my case. So basically, it was the worst hep appointment I've had to date which is wild given I'm diagnosed. You'd think this kind of bullshit would only affect yet to be diagnosed issues.

It doesn't matter, I guess. The hep is just my MRI dealer, right? And I've got the MRIs squared away so I'm good. I don't need them to be super sharp right now, but I suspect I'm pretty screwed if things ever get complicated.

Hierarchy of Covid Needs

Someone asked me if I had tried anti-virals for long covid yet.

And I just laughed like a banshee on PCP.

If you are person with a lot of medical issues, long covid may not even be your biggest problem.

If you are a parent with long covid who has children with health issues and long covid, you don't come first.

In any given family, there are only so many resources for doctor's appointments. Only so much time available to go to the doctor. Only so much money.  And very high deductibles and soooo very many other competing priorities.

Forget money, forget insurance, just time is problem. In a family with a lot of medical issues and long covid, there's no time to help everyone. Someone has to sit it out. This is a hidden problem when it comes to the aftermath of covid. I can't be the only parent taking the backseat on this.

Also, because we don't know what we're doing with long covid, we're locking what treatment we do have away in these tiny long haul covid clinics who are all doing their own thing. Some are busy treating long haul as a psych issue. Some are treating it as chronic fatigue. There are literally not enough appointments for the number of patients affected. 

Do people even understand that? There's not enough supply for demand. And God only knows what model of care you're going to get when you do see someone.

No capacity. No model of care. Only guesses and chances. 

The math doesn't work. No one does the math. No one talks about the math. But it's real. Silence doesn't invalidate the numbers. Silence doesn't mean everything's fine.

So care is difficult to access and it's not turnkey. Nor is there any push to improve access faster. It's kind of fascinating to me that we know the most vulnerable to long covid are often the ones already dealing with health issues and there's just no sense that we need to make access simpler and easier otherwise they may never get help. The system doesn't care. The specialists are so siloed, they're not going to lift a finger, it's outside their purview and they've been trained very well to be very myopic.

But covid doesn't care about Ivory Silos. It's transgressive. It has no boundaries.

We need integrated care. When you see the neurologist for your whatever, there needs to be a long covid provider that's part of the visit or something equivalent. In reality, it should be the same for PCP appointments too. (I just met a 28 year old kid who had a covid related stroke. Where's their preventative screening? It doesn't exist.) Don't forget dialysis. Cancer care. 

Anything requiring infusions or lots of regular appointments FOLD LONG COVID CARE INTO CARE THAT'S ALREADY HAPPENING. 

Give patients some quality of life. No one wants to live at the doctor's office. We're busy. We're tired. Very likely we're not the only ones at home with long covid. Very likely covid is impacting the conditions we see the specialists for and we need them to incorporate it all into our care. Help us.

Like, how much time does medicine think people have? They really seem to think riding a full-time medical merry-go-round is fine. 

Here's what long haul treatment in the mix with other issues looks like in 2023: Drive an hour this way for an infusion. An hour that way for PT. And hour another direction for therapy. Multiple multi-specialty follow up appointments for the long haul clinic...anther hour drive. Each. Then all the usual non covid specialists also an hour drive away. 

Drive drive drive. Time time time.

One appointment easily turns in a four hour odyssey. PEOPLE DON'T HAVE TIME FOR THIS. On what planet does anyone think they do?

If it's not turn key, it's going to be the last thing on the list for me. I don't have time for it. I have to babysit the tumors because they are changing and my kid has to come first beyond that. Ergo, other things languish. I can only do so much. 

So no. I haven't tried anti-virals for long covid. I'd like to (although I'm not optimistic as my biggest battle is the way covid triggered all these nerve issues and that seems to be a less common problem lol lol lol why be normal hahaaaaaaaaa), but no one's prescribing it without a six month wait to get into a clinic*. A clinic with no guarantees they'll do anything anyway.

So tell me. How the fuck am I supposed to put that at the top of the list for me? I can't justify it. Can you?

*I mean, I could lie my ass off at a telehealth appointment and score some paxlovid that way, which to be clear, I would have no issue doing if I knew my shit** BUT we barely know anything about covid and I'm a little leery of going off the map with it right now. 

**Yeah. Welcome to modern health care. Where patients work the system to get what they need. And yep, probably people abuse this option, but they're not the root cause. Don't get twisted on what the root cause really is here. It's the system, not the people. Patients are just trying to survive a dysfunctional system that blames them and overcharges them for everything. 

I have no compunction about doing what I need to do to get care out of this craptastic system that passes for healthcare in this civilization. That said, fortunately, it's not something I've had to resort to all that much. I'm not over here rolling in meds obtained under suspicious circumstances. But if I'm ever properly prescribed Paxlovid, and learn its ins and outs...hell yes, I'd leverage telehealth to get some in the future if I needed it and couldn't get the system to function on my behalf otherwise.

But at the rate Covid is outpacing treatments, this is all going to be moot soon anyway. Soon we'll have nothing at all that helps. 

Are You There Science?

Spent some time with the sane side of my family for the last Christmas event. Yep. It is kind of late. Listen, between divorce and X number of siblings with spouses who have parents who are also divorced there's something like 15 Christmas get togethers and it's hard to coordinate. Oh, and there are holiday adjacent birthdays a few times over. So it's up to like almost 20 different family events between everyone. 

So. I try to just roll with it and find an opening that works for folks.

It was lovely. The teen got some 1:1 time with cousins. She's lucky enough to have a good crowd of cousins who all mesh well.

Unfortunately, she's not feeling well. Still. She's just having a lot of issues. She's on the 11th med now and has taken every possible chemical available now. Another one is out of stock so she's getting the full brunt of those symptoms on top of everything else.

 No one has any answers. Not even Dr. Google...she's either got some bizarre beyond extreme form of normal body whackiness or has something really weird going on. We can't tell which. And neither can the doctors. And some of this has major quality of life implications. It has to get fixed. Has to. Any kind of a normal life won't be possible otherwise. 

We're doing what we can. We were offered Chinese herbs and we're desperate enough to take them now. We've triggered some second opinions and we've got some follow up appointments coming as well, that hopefully (please please please) will stabilize other things that decided to yeet themselves off the rails.

And we're having conversations about how we get off this hamster wheel. She hates this. I hate it for her. Can we optimize? What do we have to do vs what we like to do? What's working vs. what's not?

 I've suggested we take PT down to once a month. She's doing her exercises largely on her own steam now and probably doesn't need weekly appointments. And the thing is, PT is useful but it's not really changing anything. It's not increasing her functionality. So if the impact isn't there, why are we going every week? 

And we're hoping to replace the infusions with medication. Infusions are nice. The extra fluids are helpful, but it doesn't sustain and it's a lot of driving and a lot of time to go every week. Is the value there? Could something else work better? We're going to find out.

This schedule of constant appointments is unsustainable. Half the time we are at the doctor or at pt or at an infusion anymore. Half. The. Time. The specialists all want to follow her closely, but then don't have any good solutions. I'm ready for hubby to pull FMLA and start handling some of this. I don't have time for my appointments that need to be done and my post covid/living with tumors/spine not letting me sleep energy is struggling to keep up. Oh, and I'm supposed to be working too. And cook dinner. And clean. And organize the household and, and, fucking and. I'm drowning. 

I can't believe that I have a kid with objective abnormal stuff and no one can figure any of it out. That it's so damn hard to stabilize. Like, they can see there are problems. We aren't running into issues on that side. They see it. It's tangible for the most part so we don't get blown off, we're all on the same page. It's the complete lack of effective treatment that's the pisser. 

Come on, Science. Where are you? My kid needs you. 

Attempting Hard Things

I've actually been trying to exercise. It hurts. A lot. Although surprisingly I haven't lost all that much upper body strength. I've actually been strong enough to do walking planks across the floor. It's my spine that hurts no thanks to covid and the covid vaccines. 

Disconnected from the exercise, my spine suddenly caused numbness in both legs and kept me up all night. I have NO idea why. I hope it was a one time thing. I'm really not looking to see a doctor for this.

All of this makes me wonder what my future mobility is going to be and how long I'm going to be as active as I am now and whether exercise will really allow me to hold onto any of it longer. My joints and spine feel like they've aged decades because of covid.

I had another asthma attack. This one due to (I think) air quality that normally would not be an issue. It was milder than the last one, but that didn't matter. It wiped me out anyway. I suspect this new intensity, this extra sick is a result of covid. These kinds of attacks didn't hit me like this before.

My addict parent is falling apart. They will either be forced into a guardianship or something catastrophic will happen. Unfortunately, the bar for guardianship is so high that self destruction is more likely. I'm past being sad about, I'm frustrated. We could do better on their behalf but we're not allowed. We can only watch, powerless.

My other parent is increasingly senile. They're having a hard time correctly perceiving tone and syntax and keeping up with who is saying what to whom and they don't know this about themselves. I called the dog an asshole (in jest) and the parent took a full thirty seconds to work through it wasn't directed at them. Or at least, I think they figured that out. I don't know. Maybe not. 

They've decided they've been horribly insulted a few times now and the response to these perceived slights has been toxically unpleasant. We have to walk on egg shells around them now because we never know what conclusions they're going to draw.

The teen's fever has spiked again. I have no words for this other than more WTF WTF WTF. When does this end well? Never? 

People ask how I am. I'm at the point where I just lie. Hanging in there. Working on a project for work. How are you?

I mean, I have friends willing to be supportive and listen, but honestly, it's just exhausting to talk about it at all. I don't want to explain. Or give this shit more energy. 

But here I am bitching anyway so...

Anyway. Things are hard. I am not winning. I am doing the best I can in the middle of a shit storm that will not end. 

The Great Disconnect

Again, anthropologists have this concept of ideal vs actual culture and it is the bug that's up my ass anymore. What we tout as the thing to do is not necessarily the thing that happens. I feel like I see this concept play out a lot in many facets of society right now. I'm sure it's always been this way (or else why have the concept, right?) but the cognitive dissonance of it in this era requires unsustainable levels of suspending disbelief.

Some examples...

In The Economist, there's a write up on how everyone thought the pandemic would usher in the age of robots, except that didn't happen and they decided to pontificate on it for 500 words or so. I read the article specifically looking for the admission that maybe robot tech isn't as far along as we've been told but no. Their analysis is just 'golly gee who knoooows why this is, it is such a mystery, guys.'

The thing is, the 'robots will replace us' boogeyman has been trotted out for the last thirty years. So where the fuck are the robots? That's the real question. Not 'why didn't the pandemic give birth to the robot age?' 

We've been told the robot age will ruin everything for the last thirty years. I could go back further, but the 1990s marked some advancement in the tech that allowed the tech industry another dog and pony show to excite investment. So where the fuck are the robots?

Spoiler: there aren't any. The robots aren't coming. Not any time soon. Especially not with pandemic driven supply chain issues around computer chips. 

Best we can do is drones piloted by humans. Drones you can shoot out of the sky with a shoe given what we've seen in Ukraine.

Best we can do is self checkout to the point where everyone shoplifts from Walmart and the corporate response is to threaten to shut down the store. (As we all know, shoplifters don't have legs or the ability to drive, they have roots that tie them to one place 24/7.)

No one wants to admit that automation lowers the threshold for what would be considered immoral behavior. Aka theft and destruction. It's almost like humans need humans to have a social contract and machines and faceless systems will only trigger side quests for cheat codes.

Someone told me they thought ChickFilA should have kiosks and not make workers stand outside to take orders. They were worried about the big storm we had and how cold it was. But guess what? Tech isn't going to work in a -35 windchill. 

And when you try to make everything tech, you create an endless matryoshka of problems with complicated solutions. Fine. Install kiosks. When they break, what happens? When some asshat with a gun shoots it in the keypad in a fit of uniquely American rage, how do you fix it? You'll have to call an off site repair company. What's your down time, your back up system while you're waiting on that? You don't have any people, so what's the plan? There are no pinch hitter robots...

We are adding complexity to where problems are harder to fix. You can see this with the internet now. Initially, the internet put travel agents out of business--to pick a concrete example. Now they're back. There's just too much to know. I see it in my industry as well. There's literally too much to learn and too many choices and information on human behavior around different options (key for conversion) is behind expensive paywalls or wells of experience most people will never be able to access.  

Further, the software is way overhyped. Mostly new technology doesn't work as promised. It's glitch after glitch after glitch that somehow never make headlines. You need content experts to navigate it. Otherwise, you can't make a good decision or source the right tool.

Now, there are some wins, particularly in the warehouse and distribution space and preexisting factory applications, but that's about it. There are no robots ready to displace us from every sector of the economy. The vast majority of robots so far need human nannies. 

Clarification: I'm not anti tech. I'm anti lying about its capabilities and fomenting hysteria around it. Stop peeing on my leg and telling me it's a robot. There is no fucking robot. Find a better way to raise capital for your next funding round.

Anyway, I see a similar boogeyman hysteria with AI, which I keep up with and have tested heavily as it affects my industry. I speak from direct experience on this. 

The ideal of AI is that it'll make everything easier and amazing. But what's actually happening is not even close. However, we're in a cycle where there's a lot of lying going on, I assume to both sell AI services, and also to gain more venture capital investment.

Here's the thing, the vast majority of AI was developed with no regard for copyright or intellectual property. In some cases, the code used to build the AI was allegedly stolen. I've seen a lot of people ignoring this information, even thought leaders. It's astonishing. They think we're good to go. They've drank the Kool-aid. The PR has done an excellent job of de-emphasizing this fun fact.

But in reality, AI is lyin', cheatin', and theiving. AI generated art produces images with artists' signatures and paywall watermarks and even recognizable brush strokes...the AI is obviously sourcing from copyrighted material to 'train' itself into a commercial product. Text AI provides no source bibliography so you can't tell if the AI is pulling from Mein Kampf or the Bible, if medical advice is from an Ivermectin nut or Mayo. 

By being so sloppy in how they built the AI dataset, developers have essentially guaranteed the whole thing will be bogged down in lawsuits (not to mention basic functional problems) until the end of time. If what I'm hearing from my network is true, the lawsuits are going to nuke AI as it stands now. Just the lack of a bibliography is going to make it largely unworkable for anything other than novelty use. 

Further, the outputs are also not as sophisticated as people think. AI looks great superficially, but it doesn't hold up to scrutiny. Too many details are off. Anyone with any sense of syntax and diction won't be fooled (however, there are not very many who can read at that level so...) and the vast majority of people who would use it to cheat aren't sophisticated enough to pull it off (see high schoolers turning in Wikipedia articles complete with hyperlinks and the fundraising message). It can't handle much complexity and text AI has also been found to make factual errors. 

Art AI has its own trouble spots. It can't draw hands or eyes very well or create complicated scenes or follow clear directions. The prompt dog sleeping under the Christmas tree is more likely to result in a horror mash up of half Christmas tree half dog than anything else.

The only AI that's working and fully functional is narration. AI narration will become a standard going forward. But is it really AI? Is it though? It's not doing much more than fancier text-to-speech. It's automated, but it's not AI. It can't edit. Can't infer. Can't correct. How is it AI? And if it is AI, why isn't it showing more capability?

And humans are turning out to be dumber than the AI. I read one article on text AI where the dude used it as a search engine. Why the fuck would you use AI that stopped feeding its dataset in 2021 as a search engine? Why the fuck would you use AI that won't give you a bibliography of inputs? That doesn't materially improve upon search engines but instead co-opts it? Ooo search results written like an essay. Much cutting edge. Much avante garde. So revolution.

Why the fuck are people's standards so low and their imaginations so poor? We could have AI that could take us to Mars, but we'd use it to find a cookie recipe and prank people like Putin and accidentally spark a nuclear exchange. The existence of a capability and its effective utilization are two different activities, and all too often, never the twain shall meet. The Venn diagram isn't one full circle here.

Again, it's just a big disconnect. What's said and what is and what's done are ALL different in this era and they don't intersect. There's no unifier, no synthesis. If there was, AI wouldn't have a 29 billion dollar valuation after its latest bot and media hype campaign. Once you start asking questions, things don't hold up.

Side question: Where are the skeptics? Where are the people who pick apart ideas to make sure they hold up? 

Let's get back into the pandemic for a second. There were two articles that were being passed around social media recently. One on how everyone's fat now and another on how everyone needs to exercise. Everyone as very excited and agitated over these articles. OMG fatties bad. OMG lazies bad. 

There's no recognition of the impact of Covid. Yes, that's me in the corner, looking at the all the long haulers going 'what about Covid?'

Y'all, it's not 2019. We're not the humans we were three years ago. Why are we doing 2019 science still?

I lost weight with Covid. I'm way skinner now but my health is so much worse. Other people gained weight because of Covid. And Covid has spread at such scale that you have to wonder if weight has ceased to function as a biomarker of health or disease to the same degree it did in the before times. Most of us can't exercise. I'm still just trying to manage daily activities. But yes please give us a lecture about weight and exercise being the key to health as if the pandemic never happened.

We have to factor in Covid. But we can't manage it. No one can even SAY that out loud. We're all just going to pretend the foundations of science weren't undermined by Covid. People had all this research in motion, all these aspirations of a career in science that predate Covid and there's nothing stopping the train to make sure it arrives at the station. Everything changed, but we're publishing what's already outdated come hell or high water.

Cancer in the under 50 age group is increasing. I read the article several months ago looking for mention of forever chemicals and microplastics and nope, not one word. It was all fat, fat, fatties. To the point where I wonder if that's a paid omission. Gotta keep environmentalism down. (For those who don't know, there's a long history of big polluters suppressing information and funding extremism to undermine the environmental moment --remember big tobacco and their BS? That. Also, environmentalists are straight up murdered a lot. Here's a BBC article on that just so you know I haven't gone full conspiracy theory.)

We're not incorporating all the factors at play into our analyses. Whether through our own lack of imagination or via competitive agendas. Ergo, nothing is functional. It's all disconnected.

And no one talks about it. 

What gets attention is some dipshit using AI as a search engine. The Economist super confused about the lack of robot overlords. No one questions the premise. No one looks at what's missing from the datasets or what errors were introduced. No one compares the ideal to the actual and calls bullshit.

There's another article this week talking about how science is less disruptive now, as in they're running out of stuff to learn. Full disclosure, I haven't read it, but I've watched some of the conversation around it. People think we've discovered almost everything there is to know. That's the consensus. 

But to me, it's the most ignorant thing anyone could think.

And I guess, I'm just wondering how the hell do we navigate this mess? All the threads are off the loom* and we're trying to weave single threads into a whole, but it's not working, it can't work.

I don't have any answers, but it seems like calling out the problem would be a place to start. Tech hype is merely hype. And it's particularly aggressive now. And we have to integrate covid and pollution into medical science or pay the price for the omission. Our problem solving, the way we synthesize information and data needs to evolve. Until it does, we're stuck and tech won't save us both given its current capabilities and if we don't build it and use it wisely in the first place.

*Did you know? Loom pattern cards from the 1800s form the basis of modern computer coding.

America Abandoning Covid Mitigation?

Ran across this piece in the Wall St. Journal the other night. As someone who is at risk from Covid and very interested in avoiding another prolonged recovery, I'm not pleased to see it appears we're giving up on Covid.

It's majority medicine at its finest. Most people will be fine. So 20% collateral damage is fine. Apparently. 

We can't save everyone, so we'll save no one. It's cheaper that way.

A pinch of plagicide. You'll barely feel it.

If someone can find a profit in treating Covid patients, cool, but they're on their own (aside from their regularly scheduled government subsidies).

Some snippets:

"The Administration’s response has been to implore doctors to prescribe the antiviral Paxlovid. But many patients at highest risk for Covid can’t take the Pfizer drug because they have medical conditions or take drugs that could cause life-threatening interactions. One study found that half of hospitalized patients who die from Covid have a contraindication with Paxlovid. Some patients can temporarily stop taking other medications, but many can’t or would need to be weaned off them. Doctors could be sued if they prescribe Paxlovid to patients with contraindications who later have complications."

I called this out (not here) over a year ago and it was crickets. Doctors said shit online. There was no analysis. If you looked at the headlines when Paxlovid first came out, you wouldn't know this. You had to dig for it. No one would do the logistics, but I did and I knew it was going to be bullshit.  

Our perceptions were managed. Profits were protected. The media was complicit. Politicians wanted to win their re-election campaigns. And corporations wanted all the money.

Those of us who had contraindications which also meant we really really needed protection from Covid, we got nothing.

As it was, as it will always be.

(Side bar: The same dynamics are at play with regards to AI right now. We're all trapped in an episode of Shark Tank.)

"The FDA has authorized convalescent plasma for the immuno-compromised, but it is rarely administered because the National Institutes of Health’s clinical guidelines say there’s “insufficient evidence” to recommend it.

But studies have shown substantial benefit from a high-dose treatment when administered shortly after symptoms develop. The NIH and Defense Department helped fund a randomized controlled trial that found convalescent plasma reduced the risk of hospitalization by some 80% when given to patients within five days of symptom onset. Why bother funding studies if NIH ignores the results?

NIH’s resistance to convalescent plasma has perplexed some of the country’s top immunologists, who wrote to the agency last month pointing out its “logically inconsistent” position since it has recommended monoclonal antibodies based on much less evidence. Convalescent plasma “has virtually no contraindications,” “neutralizes the latest variants, adapts to the rapidly-evolving virus, and is desperately needed for immunocompromised patients,” the letter noted."

"Numerous biotech start-ups are developing Covid antivirals, but the FDA has insisted their drugs be tested against the standard of care—meaning Paxlovid. But they say Pfizer won’t give them access to its drug to run trials."

Given the amount of lying that goes on in public discourse anymore, who knows where the truth lies on these last two snippets. Paxlovid I know about because I read the primary source material. These two, I have not done my homework on and there are enough partisan snipes in the piece that there could be spin on this that doesn't accurately represent the facts. 

However, the overall question stands...where are the better treatments for Covid? Like, what's the plan? It looks like we've given up. We're going to let the free market figure it out? No matter who dies? No matter how many medical care providers we abuse or hospitals we destroy?

Remodeling

I did a downward facing dog and a plank for the first time since my hand was squashed. Major progress there. It felt good. My hand was ready.

Asthma has left the building. So has the prednisone and my arthritis is feeling it. Ouch. Don't get old, folks. It kind of sucks.

Liver is twinging but behaving. 

I would like to exercise, but I'm feeling really wiped lately. Although the last click of time here has been intense both health and family wise so I guess some down time isn't totally out of order. Hopefully, I'll get some pep back and plank my gut off now that all my hands work. Gotta get this fixer upper of a body moving.

Speaking of fixer uppers...The main family bathroom is done! If you recall, that was a big goal of ours. We're still working on final fixtures and bathroom storage. For the first time, every cabinet in a room is upcycled. We were able to pull from our beyond extensive (and slightly concerning) inventory of cabinets and found things that fit. It's a miracle.

The kitchen backsplash tile is finally done. We have a Butler Pantry cabinet original to the house that we'll refinish for one wall and then a custom cabinet coming for the other (to match an antique cabinet that's apparently the last of its kind left in the world because we can't find a second one anywhere).

There's lots of little finishing work to do, but we're close to fully completing the remodels of several different rooms. 

And right now, I'm distracted by the idea of doing a YouTube channel touring the house and talking about the remodel process. We're not able to film a remodel show. Things are too piecemeal in how we work. DIY remodels are not well organized. But it'd been interesting I think to go over the work we did and talk about the mistakes and wins of it. 

Lots of people have old Victorians and if you're not handy, it can eat you alive. We have the skill set (in hubby mostly but I source, organize, design, find the best price, and talk hubby off the ledge as needed) and it's still a lot. But having people who've been there, done that share their experience is helpful and there's a need for more of that.

I don't know if I'll actually do it, not sure I really have the time/energy, and at the core, we're not really video people, video isn't really our interest or something we gravitate to, but it'd be a fun and worthwhile project. Hence...my distraction today. I don't know. Maybe I'll start with Instagram and storyboard it there first. Hmmm. I'm more naturally inclined to do photos than video. That might fit.

Naturally inclined what? That probably sounded weird. If you don't use social media for work it might not make sense, not sure. But I have to use a lot of social media for work and thus I know what I'm a natural at and what I'm all thumbs and centipedic* left feet at. Video doesn't come easy. Even if I'm not on camera (which I do my best to avoid). The workflow for photos...I can find a groove with that.

Anyway, it's an idea that won't leave me alone today.

Teen is doing okay. Holding steady. She's doing her first infusion soon. Yeah, I know. I find it a touch woo myself, but hey, we're at a major hospital and they seem to know what they're doing, or at least are in contact with enough people that if they were doing outright voodoo someone would notice. It's not going to hurt and may help. We'll see. Teen continues to have a one in a million positive experience with the health care system. We keep pinching ourselves because it doesn't feel real.

*centipedic isn't a word but I think it works well enough that maybe it should be.

No Way Out

Knee is healing, but is dodgy and can't be trusted. It seems loosy goosey inside. Sigh. Did I ask for that, universe? No. No. I did not.

Hand is fine. Still swollen a bit. Not sure if that's a permanent change or if it'll someday finally fully resolve. But everything works.

I'm feeling a little more run down than I was, but relatively normal overall. I think the high of feeling better has worn off. It's always so amazing when you're in the pit and then suddenly you feel so great you float right out. Wish that lift lasted longer.

I can eat! I've been able to eat for the last however long. 5? 6? 8? weeks now. It's so nice! 

I didn't realize how badly Covid and the vaccines were suppressing my appetite. Now that I have one again, it's brutally obvious. The hunger is in beast mode. I can tell my body is desperate to get all the calories it missed out on.

The tricky part is not irritating my liver while dealing with the primal, feral need to eat. But I'm SO HUNGRY. I want to eat planets and galaxies, one in each fist and cram them down my gullet and then slurp down the Milky Way like a milkshake. And I haven't even been on steroids lately!

I have lost about 75% of my hair. I don't have bald spots, but my hair is very thin and won't hold clips or scrunchies anymore. I hope some hair vitamins and improved nutrition will bring my hair back. It really sucks. I had nice hair. 

My big concern now is never getting covid again...which is probably a pipe dream.

We are supposed to travel to a big family wedding this year. Which is fine, so long as we wear N95s but hubby isn't feeling masks. I'm deeply concerned about catching covid again. If he's burned out, I'm going to be screwed.

I read a recent article that said 60% of deaths in the hospital are vaccinated and even boosted, and that they don't anticipate a better vaccine for 3-5 years. 

Y'all...I don't know. I think covid could kill me or someone else in my family by then. Although I'm pretty sure the live-in parent has to be naturally immune. They take no precautions and have never been sick despite repeated exposure. Hubby doesn't get too sick, but I worry about some of the cardiovascular aftermath people can have. His health is decent, but he's showing some wear as he ages. The teen and I get the sickest.

 A while back, hubby made a remark about me needing to make more money and I made the point that I can't be crippled with covid in order to do that. 

The live-in parent wanted to have a New Year's Eve party and I made the point that could destroy me for up to a year if it results in covid (or even RSV). And that it wouldn't be good for the teen to get sick again either. Not to mention the teen works with immunocompromised folks as well.

To clarify, if treatment or vaccines improve, I'm down with doing all the things no holds barred, but until then we need to frame things as 'which do I want more? To disable Pinata or Teen for so long it becomes a daily inconvenience or do xyz, a one time thing?'

Our household is divided. The people who don't have to pay the price with their health want to go about life as normal. I can't control them. So me and the teen are at their mercy.

How long will people put up with masks for me and the teen? It turns out there may very well be a limit. That love isn't enough. And eh...the live-in parent, I'm not surprised, but hubby is a good guy. That he's tapped out is surprising. Pandemics are ruthless. They destroy everything, not just health: supply chain, peace, relationships, patience. 

We could prevent covid indefinitely, but I don't know that we will. Humans were not designed for this level of constant vigilance. 

With regard to my business, I'm working to create some alternative revenue streams that are turnkey and hopefully grow those to pad my income so if I catch covid again, I have some passive revenue going more so than usual. We'll see.

I wish I could tell a different story with this. One where we were all on the same page, but I can't. It's really been eye opening to watch how so few people can manage a pandemic. You're only going to do as well as other people's ability to follow the science, avoid the bullshit, and maintain consistency. The vast majority of people can't hack it. If they could, we'd all be wearing N95s and Covid would be contained.

We're all trapped in a pandemic with no way out anytime soon.

No Money, No Study

I had a...I'm not sure what you call it? Intake review? Case review? Chat? Anyway, I talked to one study. They'd like to have me, but everything is out of pocket with multiple trips each year. Since it's out-of-state, my insurance would mark it as out-of-network and only cover a portion and I'm not pay-retail-for-my-healthcare rich so...

You'd think there'd be a federal law that health insurance has to cover medical study care as if it's in network, but no. 

You'd think it would be more important to try and stop/cure pancreatic cancer, but no.

This clinical study stuff is horribly dysfunctional and we're probably missing out on a hell of a lot of innovation due to bureaucratic roadblocks like this. It's crazy.

And then you get into the patients mostly being limited to certain socioeconomic classes and how that might skew the data, not to mention the horrible inequity of it all.

Why are we not more aggressively crowdfunding science? I know it happens, but not nearly enough.

At least I don't need the study. I'm not in dire straits. I just had hoped to be useful in some way. I would like all this medical bullshit to serve some purpose, but I can't afford what that would cost apparently.

In anthropology they talk about ideal vs. actual culture. The ideal of medicine, of health, vs. what's actually true is one hell of a bad mind trip, man. 

PS: The dog is fine. Thank goodness. Oy. I still can't believe that he got a chicken bone. Super super glad he didn't need surgery. He'd already hoovered his way into one obstruction back when we first got him and didn't know this was an issue...not looking for a repeat!

PPS: Knee is still pissed. But my swollen gland has gone down. Maybe my knee is next?

About

 

My body is a pinata of pathology. Rare and chronic stuff spews forth every time you look at me funny. Be careful. You never know what's going to fall out. 

Basically, the moral of the story is...don't be me. Just don't. Medicine kills patients like me and they are mercilessly efficient.

Right now, this is what we think is going on as far as we know:

-Hepatic Adenomatosis- .007% of the population. 30+ tumors. Hepatic resection due to hemorrhaging within the capsule. Took 12 appointments and multiple ER visits over a month while acutely ill and unable to eat to get anyone to order testing and figure out a diagnosis. At one point, I was told I just had IBS even though you could see some of the tumors on the ER CT.

From start to finish, once symptoms started, this took five years to diagnose properly and was only diagnosed when it became critical. It caused gross anatomical abnormalities that garnered comments from various physicians who never did any follow-up for over a decade. It's quite possible that, with better care and earlier imaging, I might have avoided a hepatic resection or been able to pursue less invasive options.

-Familial Hyperaldosteronism. Clearly inherited but not by any genes known to genetics. We've been told they might figure out the genes in the future. Took ten years to get diagnosed, although I finagled treatment for it sooner than that. My relatives have festered for 15 and 20 years and one has died due to lack of diagnosis and proper treatment.

-Asthma, sometimes difficult to control. Source of history of long term, high dose steroid use x 15 years. (I predate modern asthma medications and prednisone was the only tool in the toolbox for out of control asthma.)

-History of adrenal insufficiency after high dose steroids (3x) with 1 adrenal crisis. (Yes, textbooks say that's impossible but my body doesn't read or care about textbooks, and frankly, most of the thresholds and standards were set almost a century ago. I imagine the epigenetic substrate has evolved since then. Don't you? And shout out to the ER who treated it as a crisis and saved my ass. You rock!)

 -PCOS with infertility requiring IVF.

-Prediabetic. Likely since puberty. Through tremendous effort on my part, I've managed to stave off diabetes to date.

-Diverticulosis with some rounds of the -itis. I was told it's likely from long term prednisone use. 

-Synovial cyst triggered hard by the Covid vaccines (yes, really) to the point of requiring surgery and congenital spine deformities (benign but somewhat relevant as my spine crumbles with age).

-Obesity which is really a symptom of the different endocrine things going on. But it's been weaponized a lot to deny me care, especially when I was younger. Like everyone, I've done different diets and exercise programs but the weight always came back. Or I wouldn't lose at all.

As of the last several years, the liver tumors really inhibit eating. That's the bizarre thing. I should be skinny now. I'm at a deficit with a hard limit imposed by the liver--I can't overeat at all. Sometimes I'm even starving (literally sub 1000 calories) for months at a time and don't drop much weight at all. My system is just clearly abnormal.

To be clear, I KNOW WHAT TO DO and it used to work (kind of). NOW IT DOESN'T WORK AT ALL. 

I have sat through the dietician appointments telling me not to drink soda. Like, wow. So science. Much medicine. Yeesh. Okay Sherlock. Try this clue; I'm not a beginner. 

Right now, I'm having decent success using Ozempic which seems to correct my metabolism to where I can tolerate a more normal diet without weight gain. However, inputs like exercise and calorie counting still aren't as effective as they should be. Weight loss is still very slow.

-CHEK2 genetic mutation.

-APOA5 genetic mutation.

-Pancreatic IPMN which has started growing. 

-Grab bag of issues from Covid. Covid really hits my nerves hard for some reason, as do the vaccines.

Look, doctors do their best to deny, dismiss, deflect, and delay my care. Even the nice ones. Even the good ones. 

Mostly I get diagnosed or access care because I took all the premed classes I could manage until I was half way medically literate and then combined that with being hella stubborn and pushing hard for care. 

The big question no one can answer is most of my shit could be diagnosed with 1-3 months of testing and imaging. I'm not hard to diagnose. All the science was in place, but no one would pick it up and use it on my behalf. 

Instead, I've been left to fester for literal decades and neglected until I've not only lost out on money and time, but have also had to have major surgeries. At this rate, medicine will eventually kill me. They've already killed other family members.

We're going to live on Mars, but God forbid we do blood work or an MRI or listen to the patient...

And because physicians always like to evaluate patients' intelligence based on what we do...Despite some of the ugly writing on this blog, I'm a bestselling author (don't ask, I'm not telling) and I run several small businesses that would bring in way more money if I didn't have to deal with my health all the time. I've been a thought leader in every industry I've worked in with citations in mainstream media, speaking engagements etc... 

Prior to starting my own businesses, I worked in Fortune 500 corporations doing complicated supply chain logistics with serious life and death as well as environmental implications. Doctors aren't the only ones who save lives...

The world should be my oyster, instead I pour the best of my energy into begging doctors to do more than deny, delay, deflect and dismiss me. And then finding a way around them when they won't.

Note: Timelines and other minor details are obfuscated in an effort to make me less identifiable.