Sneezy, Sleepy, Sore Dragon

It's 3:30 am as I type and I've yet to sleep tonight. Just one of those things.

My calves are mysteriously angry and I didn't take any Advil before bed which was a major unforced error.

And my hips are hurting because why not.

And my brain is spinning because my brain.

And I'm sneezing because fall is here and my immune system feels some kind of way about it.

As for my calves...I think it's just a case of being old enough to where if you move funny you can dislocate your eyeballs. I don't think I did anything in particular. I'm just old. Or it's my electrolytes, but in theory, that should be fine.

Anyway... I'm up and I'm out of funny memes so let's recap the latest.

I saw the OB about CHEK2 and not getting pregnant. OB ran some labs to see if I'm in menopause or not and we'll go from there. They think my risk is low, but I'm just paranoid and this is not the era of history to have an unplanned pregnancy when you're not supposed to get pregnant but also can't take birth control.

On the CHEK2, I want some extra screening, but there's little interest in that. The thing is, you can't take anything we think we know about CHEK2 as gospel. There was a study that came out in the last few months that decided there's no colon cancer risk with the mutation. But before that, they found an association with leukemia.

Basically, they don't know what they don't know. It's still emerging. So let's be a little more vigilant. We know this increases cancer risk, we just don't know which ones for sure.

But I'm almost done with doctor's appointments for the foreseeable future. I think. Maybe. Things are not going well with the hep...their retiring-but-I'll-still-see-you thing isn't quite panning out. I can't make any appointments and their secretary no longer seems to be attached to the number I have. I may have to find someone new sooner than later. 

I'm up to six phone calls and have gotten exactly nowhere. At some point in the near future, it'll be ombudsman time.

On the upside, the OB isn't retiring. So maybe I'll have ONE doctor left standing who knows I'm just partially insane. Woo.

Teen has a few more appointments and will be done for a while as well. Infectious Diseases is following her closely so we'll have that a few more times, and I'm guessing Cardiology will want to keep in touch.

Hmm. Well, now I don't know. After typing that, maybe we're not getting much of a break after all. At least part of what's happening is we're fine tuning some medication that seems to be working quite well for some of her issues. We've had a bit of a breakthrough recently. So it's worth it, but we both want to get away from the medical gauntlet run. 

Hopefully we can figure that out...

The teen continues to handle college like a boss. The one professor still has no boundaries and messages at all hours of the day and night and is grading her extra hard because they don't like dual enrollment students, but she's hanging tough.

I feel like professors need to remember dual enrollment students typically have involved parents and involved parents know how to effectively complain and hold people to account...

My one friend started their kiddo in college a year before us and they had a loony professor too. In the same subject even. I almost feel bad for that professor as my friend handed them their ass so methodically, so diligently, so maleficently...well, basically the prof got fired.

I coached the teen through a toxic teacher in fourth grade. They were flunking her and being all kinds of snarky and weird, but the thing is I have a one star Michelin black belt in Corporate Fight Club. So I walked the teen through bureaucratically backing the teacher into a corner to where her only move was to stop fucking around and then I made sure the principal saw any administrative mistakes and mess (there were some egregious ones). Magically, all the grades changed. Just like that.

And if you're surprised there are toxic teachers. Eh. I've worked in schools off and on. Sometimes teachers gang up on kids. Or get weird. Toxic stuff happens. There are cliques and mean girls. 

I'm convinced that too many women just never mature beyond the social dynamics of tween girls, and in professions where you get a lot of women, things can get pretty bad. Read any analysis of tween girl social dynamics and I promise (sadly so) you'll sit back and go, 'shit, I know adult women behaving like this.'

I'm not sure why the switch flipped on my kid---previously she'd won the school wide citizenship award which was a big deal in that ecosystem and was an A student so it's not like I had a problem kid, you know? But the parents were pretty cliquey and toxic and they tended to influence the hierarchy among the kids as well. I guess I didn't suck enough ass among the parents in power and the administration because it didn't occur to me that I was do-or-die running with the bulls full of shit.

See also...why we homeschool (aside from the school shooting, there was lots of unimpressive stuff happening).

See also...funnily enough my friends from there all left that school after being targeted by the teachers in a similar manner. The scuttlebutt was they targeted kids who needed lots of services, but mine was just getting a little OT and mostly not even that. I did however run on the periphery of the crowd that was pretty sure the board was embezzling money and had been threatened with lawsuits when they asked to see the financials (the board was very Trumpian) so...

But I'm keeping notes. Trust.

Watch which bears you poke. Some of them are dragons.

And I think the interesting thing (to me) about this post is that the leverage available to me in the corporate world or in education just doesn't exist in medicine. That's why it's so difficult to advocate for yourself. I mean, just look at how badly basic things like making an appointment can go. The patient has little to no power and no recourse other than to expend increasing amounts of resources (time, money, energy) for an all too often substandard result. Huh. Not cool.

Avant-garde with the Lard

 

You want to piss people off? I mean really piss them off?

Tell them Calories In, Calories Out is garbage.

Look, I have experienced hypermetabolic (literally) and hypometabolic states thanks to medications and my own biochemical baseline. I have dieted. Exercised. Hacked my insulin. Been starved by tumors. I've done everything right, tracked every calorie, every carb, and lost nothing. I've been fat and not so fat, but never skinny (even despite reaching the bottom of my ideal weight range).

I could die of starvation and I would still be fat. I do not say that lightly. I'm not minimizing the reality that people do starve to death in this world. I'm serious. This isn't hyperbole co-opting the suffering of others. I am literally saying, I could starve too (and I have) and I wouldn't become emaciated (and I haven't). 

That I'm not 600 pounds is a testament to how hard I've worked. Yes. I could be 600 pounds. For real. My body has that capability. I can't make myself skinny on my own steam anymore (because aging really works against you), but I can mostly prevent/slow weight gain. It takes more effort and attention to detail than what people who lose weight do, but I can do it. 

So bite me. It's NOT just what you eat. It's how well the engine burns fuel. If your engine sucks, it doesn't matter how much or how little gas you give it.

My engine is broken.

Go tell people that. Go into weight loss forums and say it. Tell the patient groups. Try saying CICO is garbage in public.

And watch your post get deleted. And people rant and rave at you. The absolute vitriol I can trigger is stunning. 

The NEED for weight to be a personal moral failing under total personal control runs DEEP.

I'm just over here with my APOA5 mutation, PCOS, history of long term high dose prednisone use, endocrine tumors, and then other tumors that basically give me anorexia for large chunks of time while somehow never making me skinny waiting for the rest of the world to fucking get a clue and actually get real about obesity.

It will happen eventually. Medications like Ozempic will force the conversation to change. If you can biochemically manipulate weight, then CICO can't be the end all and be all of weight loss. 

And there are pathogenic genetic mutations causing obesity that people can't diet past, but we're so sooo early on that, I don't think this aspect of bariatric medicine will get very far in my lifetime. But in the future? Yes. The future of resolving obesity will be about the DNA impacting your metabolism, your gut biome, and custom medications to fix the body's engine. 

CICO spoiler: I test the limits of Ozempic all the time. I can eat way more carbs with it and still lose weight. More importantly, I won't gain weight which is unheard of. The weird part is I can also strictly diet on Ozempic  (or starve if my health is interfering with eating) and not move the scale even an ounce. Weight loss is beyond my daily intake somehow. I can't find the cause and effect between intake and weight, even on Ozempic. It seems to be running on a schedule I can't access.

With Ozempic, I can eat like a regular person (health willing) and eat when I'm hungry and have ice cream and my system just works. It's like living in a whole new body, like someone took my broken tricycle and gave me a Ferrari instead. I don't know how to operate this thing! I've had to feel guilty about every 'bad' thing I ate, about every missed workout my whole life. 

Now I can have ice cream and I can't even compute... I'm not going to gain weight? Whaaaat?

I'd love to talk to people who are down with the genetics and biochemistry of obesity, who get that CICO isn't the full story, but I think I'm all by myself over here. No one can relate. In fact, they often want to fight me.

No one wants to admit that obesity isn't always a personal responsibility issue. 

Looking at the anti-maskers and anti-vaxxers with covid, when we do finally have a better grasp on the biochemistry and genetics of obesity...will society even accept it? I wonder. It might be more important to keep blaming obese people for their issues. There's a lot of psychosocial shit invested in maintaining that status quo.

Queen of Morons

 

OMG.

I'm such an idiot.

I got all googly-eyed loop de loopy.

And I assumed it was my electrolytes. Assumed my system was still stabilizing after all the roids and anesthesia.

But actually, I forgot to eat!

Just clean forgot!

Maaaaaaan. I'm not sure how much hope there is for me if I can't figure these kinds of basic things out. 

Yeesh. 

Face palm.

Face palm.

Pas de bourree.

Jazz hands.

Sashay away.

To be fair, it was a hectic go here and there and everywhere day and I lost track of time. 

And the problem is not just being not hungry, but being anti hungry. I wondered about whether I should eat a snack and my body was like HELL NO. But I finally realized that maybe I was feeling like a gloppy slime mold oozing off a flat earth into the vacuum of space because it was 3pm and all I'd eaten for the day was two cookies and half a peach. Instead of a hunger cue, my body provided a 'don't you dare eat' cue.

In conclusion, I am a moron and my body is enabling my inherent moronicness.

Also, I am still not skinny. NO idea how that bullshit works.

(And yes, I ate cookies. Teen made some. If you're a calories in calories out person, you know I didn't eat nearly enough to be a problem. If you understand insulin resistance and how CICO only works in perfect conditions, you know the sugar is basically a force multiplier in my metabolism. Although...Ozempic mostly makes it a non issue and allows for more of a CICO model of intake vs. weight sooo...why am I still fat then?)

Another conclusion...teen definitely is hypermobile, but we have no diagnosis like EDS still. There aren't any specialists for it in our area. Eventually I imagine it'll belong to rheum but they don't yet seem to have a grasp on it. They feel her hypermobility is mild HOWEVER let the record show mild doesn't mean easy or any less of a fall risk. The rheum also endorsed braces and maybe continuing PT as that's the main treatment for hypermobility. 

So we have near universal agreement on the braces among the different specialists...it's just I'm pretty sure the head PT person wants to yeet all braces into the sun and will be giving us a lot of death glares as a result. I'm not looking forward to that conversation...

And that's it. Science doesn't have much beyond that for us at this stage. I told the teen that she'll likely get a diagnosis as an adult. We have to wait for the science to evolve and the specialists to figure out their protocols. Until then, just keep swimming...

We are now officially dismissed from rheumatology unless something changes. So we are finally making progress on jettisoning some of these endless appointments.

Ideally, I still want to ditch PT. We'll finish out the rest of the year, but I want to the teen to figure out a program to do at home on her own steam. Life isn't going to give her the free time during business hours to do PT. She needs to be more self-sufficient and PT isn't providing enough ROI to be worth the effort and time it takes. She's slooooowly coming around to the idea that, for her, health is going to take more work and she's the one who has to do it. 

But she's a bit stuck in the 'this sucks' and 'I don't wanna' phase of things. Which I completely understand, but reality is a bitch and we either kick her ass or she kicks ours...

White Lady Medicine

I'm a bit bemused by the alt right's infiltration of the new age, natural and alternative health movement. Middle aged white ladies who are anti vax and always know better than science and never listen to anyone but themselves are everywhere. Much like glitter from an unfortunate craft project dating back to 1999. It's so over, but the glitter won't quit.

I ran across a woman going on and on about how she was a nurse and she knows better and now she doesn't listen to the CDC or WHO or doctors who follow their guidelines

I just laughed in 'Wow, you found doctors who followed the CDC guidelines? Where? Keep your essential oils and send me their names.'

My issue isn't that science isn't real, it's that I can't access it, or the attention to detail is lacking when it comes to applying it, or the doctors are downright abusive...like I'd cross to the other side of the street and have 9-1 already dialed on my phone if they screamed at me like that in public.

(Caveat: My docs at the moment are decent. And the teen is probably getting the best care she'll ever see in her life right now--it's like movie star, A list, president's daughter quality shit. For me, there are some issues, but they're minor. I'm able to access the most important things I need, which is the main thing. I'm either very lucky or I've gotten old enough with enough objective evidence of issues that the gatekeeping is minimal anymore. Yup. Being old and falling apart is apparently the Promised Land of endless MRIs. Eyeroll.)

And note I'm also not saying science is perfect here. Science fucks up. A lot. Which is how woo is so popular. The part where we leave the low hanging fruit to drag everyone down drives me up a wall. But it's science that saves my ass, not woo. 

In terms of guidelines and why I found the one woman so funny, when the teen was diagnosed with Lyme, the care plan didn't follow the CDC or the IDSA (Infectious Disease docs) guidelines. I had to gird my ovaries in titanium and tap dance with the rheum to get them to do what they were supposed to do. And then we got the 'y'all don't come back now, ya hear?' send off. 

You'd think I'd asked them to do something hardcore nasty like rub a voodoo doll with essential oils and then *censored* *bleep* with a strap on. But no. I can read. And I can most certainly read the CDC and IDSA guidelines. If you're not following them, well, yeah, I am going to ask about it. Not to be an asshole, but because it's the right thing to do.

I like science. Can I have more science, please? But not science that denies, delays, deflects, dismisses, negates. Science that investigates, seeks, discovers, heals. The science that can see long covid is real. The science that can see chronic fatigue is real. That chronic Lyme is something. I want that science. I've seen it in action with the teen and it's pretty fucking cool. It's  also something every patient should be able to access. 

We can get freaky if the science comes up short. I'm not anti-alternative stuff, it's just most of it doesn't work or the effect is weak compared to a prescription medication, or it doesn't work consistently across a population, and quality control is a huge problem. You're much more likely to get swindled than get better. 

I once spent $10,000 I couldn't afford on alternative woo crap. I didn't know what to do. I felt so awful, but on paper I was fine. The docs were done with me and didn't want to hear it. So I tried woo. I was that desperate, and they are that careful to make sure you don't hear any negative information up front. (I'm convinced half the social media raving about X or Y treatment comes from bots or is paid PR.)

Dude dumped $1500 of worthless vitamins on me, did IVs that had only short lived effects, talked a lot about cortisol and progesterone, and told me going vegan would cure me. 

Meanwhile, I had an endocrine tumor coming back online after steroids, liver tumors brewing, and all the fun genetic stuff I've spent 2022 finding. I just didn't know it yet. And it wasn't like woo doc was smart enough to see anything but their very profitable schtick. They weren't any better than mainstream medicine at the time.

There's just some shit woo can't out run. It only runs to the woo doc's bank. It took me five years to pay off that $10,000 and I had nothing to show for it.

These conservative woo ladies are in for a rude awakening when their health truly goes completely off the rails. And more than a few are going to woo themselves or their kids to the point of harm. There are hard limits where there's no amount of woo that's going to save you.

But anti-intellectualism helps fascists dismantle institutions and win elections so...everyone do the dumb real good now, ya hear?

Next Chekpoint

 The next medical thing is to check in with the Gyn about Chek2. I don't think anything much will happen. I am somewhat interested in having my tubes tied because I know my karma enough to know I would get pregnant during the apocalypse of misogyny that's been unleashed this past year.

Spoiler: Technically infertile, but can't take birth control because tumors, and also sometimes with age you can get some surprise ovulations so...

And then after that, all that's left is the big wait until the next MRI to see what the pancreas is doing.

I am also dithering back and forth a bit about seeking out specialists for the pancreas now vs. later.  We'll see. The tricky part isn't so much the size with this, it's the location. It's not a clear cut okay thing. It's weird.

See also: Hi. I'm me.

Oh! And I did find a patient who had an ablation. If you recall, I had made mention of hoping something like an ablation would be coming down the pipeline and it's actually already happening!! I don't know how widely available it is, but maybe that will pan out for me and I can avoid a pancreatic resection/whipple.

On the mom end...

Teen is doing well with her college courses, but it's been eye opening to see how professors are now. We're doing online classes and the profs are not having any BS. They are quite hostile and passive aggressive. They will let you fail. They won't help you even if their tech is glitching, even if they don't know how to use the tech, and they won't fix shit. You're on your own.

Worse, they have communication policies set up such that you can never have a last minute question or problem and even asking a question 36 hours before an assignment is due won't be tolerated. This means if the teen wants to ask questions and get a response back before the deadline, she has to finish all homework 3 days before it's due which actually only gives her 24 hours to complete assignments. It's ridiculous.

We also have a prof who has no sense of boundaries. They text at all hours of the day and night. Non stop. Somehow all the information for the homework was not shared in class and has been dribbling in via ad hoc messages. 

I also like the part where the place where the teen has to copy/paste her homework erases all the formatting when they're required to have MLA formatting  BUT ALSO there's no information on how to fix it in the software. The prof told them it would eat the formatting and then nothing else. The teen had to figure out on her own to go into the html and hand code the format. And it's not a computer class.

Basically if college was a job, the teen would quit. The bosses all suck.

For contrast, we've done online classes for five years as part of our homeschooling and never run into this level of chaos. Teachers were organized. Instructions were clear. You weren't penalized for asking questions outside of class. Glitches were managed. But for college? Nothing works. No one's helpful. The professors gatekeep access to them while also messaging you more to-dos every day. 

The teen and I are a bit shellshocked at how dog-eat-dog, sink-or-swim, don't-know-don't-care the vibe is. And how little agency she has. 

Is this from the pandemic? What? I mean. Yes, assholes are the root cause. I get that much. But maybe don't lock it all down so tight and make it so difficult you start undermining the students who aren't assholes, you know?

It's unfortunate. The teen is largely rising to the occasion though and the actual academics are fine. All the problems are structural. 

And she told a bunch of teens at co-op that they were being mean and to stop harassing another kid. Not that the other teens listened, but she gave zero fucks and told them to shove it and I couldn't be more proud. Plus, it looks like zero fucks is de rigueur anymore. Just not everyone uses them wisely...

My three big pieces of advice for the teen...

1. All these sucky people are why I have always told you to focus on authority and credibility. You're going to want the leverage to pull rank as well as to escape asshats. You want to be the expert/top performer in the room and the expert/top performer who can easily find another job. 

Authority and credibility give you control and control is power. Don't flake on this. Otherwise all these annoying people? You're stuck with them. And they'll be your boss instead of the other way around. So if you look around and your cohort is making you shudder...authority and credibility is how you control the crowd you run with as an adult.

2. College is like chess. It requires strategy and planning ahead and sometimes sacrificing pawns to save the King aka your course grade. Leverage policy and procedure to your benefit. Use the syllabus to find leverage. And we don't prioritize a two point homework assignment trapped in a glitch over something worth one hundred points. Ditch the two points and score the hundred. Manage your workload and grades across the semester not against one assignment.

3.Participate in class. Establish yourself as sincere so if you need to make a big move like beg for extra credit, the prof will work with you. Hopefully things aren't so far gone that profs have zero fucks even for students who are actually trying.

PS: I'm both a preacher's and professor's kid. I've been going to lectures since I was two and I used to grade the exams for the 101 classes back when I was in high school. So I know a bit of which I speak. Although, clearly, the energy has become much darker and antagonistic.

PPS: Authority and credibility encompasses education and achievements like publishing in your field/speaking at conferences, as well as social emotional skills. It's been a big theme for us as I know how much the lack of it cost me as I navigated my corporate career (although I did publish and speak on a national level, but I didn't have the specific credentials, and as a woman, that hurt me--insert long story about misogyny and dicky know nothing men here).

Throwing Hands

My squashed hand is better but confusing. Pain is about a tenth of what it was. I seem to have full mobility and I'd say about 90% of my strength. There's some discomfort if I squeeze a fist, for example, but I can cut vegetables, something I couldn't manage last week.

The confusing part is it's swollen disproportionately to how it feels. So am I good to go? Or should I take it easy? What's the bellwether here? I'm trying to err on the side of babying it a bit and hoping the swelling goes down soon.

In full gut job remodel of an 1870 farmhouse news...

Hubby has finished tiling the shower in the main upstairs bathroom. In an effort to save money, we searched high and low for the most affordable tile that fit what we were trying to do. Unfortunately, that led us down the path to hell. 

We ended up with a tiny little hexagon tile that was a huge pain in the ass to install. In hindsight, we should've gone with the more expensive plug and play tile because it would have saved so much time. It was that much of a pita. We would've been better off to spend the extra $500-700.

Hubby, however, slayed and patiently installed the tiles, measuring out the world's tiniest triangles for the edges and corners. He did this for a month. Because you have to go slow when working with  advanced level home improvement stuff on crooked walls or else you make expensive mistakes. And going slow also means lots of sanity preserving breaks when you're trying to install the world's worst jig saw puzzle on the walls. 

But now it's done so we can move on to the next thing! Huzzah!

(For the record, the tile guy quoted us $3000 to do the tile. By comparison, we paid $300 for them to do the floor. This was beyond any level of tiling the average person does. Also known as the tile guy didn't want to do it. I told hubby either he lays the tile or I'll glue it in with E6000 craft glue because we were so not paying $3k for installation.)

So. Some background before I explain the rest of the bathroom. We've tried to upcycle as much as possible for the house both to save money and to be more sustainable (also we both like antiques and vintage and funky stuff), BUT gosh is that a huge PITA. Nothing fits like you expect. The scale is always off somehow.

I can see why there are standardized vanities and cupboards and why everything on HGTV is gray and white. Custom stuff gets finicky and fussy. Things you think will work, don't. Or there'll be something that's perfect, but you need like five of them and there's only one. Or it's super expensive because thrifting is IN now. 

We've had way more upcycle fails than wins and probably made things harder for ourselves. Sigh.  

For this bathroom, we're planning on turning an old dresser into a vanity and slapping on some vessel sinks. They do it on TV all the time, right? How hard could it be?

Hahahahahahahahahahhhaha sob sob sob.

The thing they never show on TV is how they know stuff will work. How they measure. How they standardize. How they customize. How they know. We literally have no clue. We don't know jack. We're like blind monkeys flinging decorative shit over here.

We're already having issues with fit. And color. And plumbing. And fixtures. It kind of goes like this... 

Yes, we spent $20 on thrifting awesome bathroom fixtures, but now we may need to spend $300 for something that will actually fit. The $20 things can go sit in the garage and think about what they've done until we finally get around to flipping them. 

We'll see what shakes out. Naturally, I splurged on the world's most expensive vessel sinks, the vessel sinks of my dreams, the vessel sinks that look like abalone shells. This was my one thing. My one big purchase after pinching every. single. penny. everyplace else. Meaning we're using them come hell or high water. 

There's no way out. We are doing this thing.

If it works out, it'll be bitching. I have a mermaids and sea monsters theme for the bathroom, but I'm trying to make it look high end. I've got some brilliant wall paper for an accent wall*. From a distance, it looks like a formal brocade pattern, but up close it's actually made up of mythical sea creatures. It's subtle and understated and unexpected.

The vanity will be coral orange, if I can just find the right color. The dresser we're using is from the 20s and it has these cool wavy, rippling drawers that fit the water theme. 

It has potential. We just have to get it all to work. Crossing fingers...

Lots of ifs in this post. Yikes. Well, we did get the tile in and that sucked ass so hopefully we can get through the rest of it okay.

*Given the amount of people who've bought the wallpaper after I showed folks what I selected, I must have chosen well. I should email the vendor for a commission lol.

The Long Haul to 98

 

My oxygen is finally hitting 98 on the pulse ox (instead of the 95 I've been stuck at for months). I believe it was 100 at the colonoscopy for the first time in over six months.

So.

Like.

I get that 95 and up is normal.

BUT all I can say is I can tell a huge difference now that my oxygen is higher.

And 95 was never, ever normal for me. It was a change in my baseline.

I imagine if I was at 95 sitting, that movement dropped it lower which probably didn't make me feel so great.

Isn't part of the problem with Covid that it starves tissues even though your oxygen is normal? And wouldn't it maybe be the case that depressed oxygen, even if it's technically within range albeit not typical for the patient, be a signal that things aren't as healthy as they seem? That a system may have some burden still from Covid?

It makes sense to me. But what do I know? All I've ever gotten when I bring it up is '95 is normal.'

But I can tell the difference in my energy with this change. I am much more interested--meaning I have the energy to even be interested--and able to do things. I find it interesting that it correlates with an improvement in my oxygen.

The day after the colonoscopy, I collected and processed flower seeds from the garden. So far, I have calendula, zinnia, cosmos, sunflower, and marigold. 

I chased grasshoppers around the garden and sprayed them with an organic insecticide I'm not even sure will work. They've joined the yellow jackets in feasting on my strawberries. Sigh.

I helped hubby move this massive industrial cabinet he bought. With my good hand, I loaded the drawers into the cart and lugged several loads from the garage to the basement door. I helped wash the drawers, but that got to be too much for my hand injury.

Then I went with hubby to pick up a cabinet we found on marketplace. We're not quite to the point of being cabinet hoarders, but it's close. We plan to flip a lot of stuff at some point...the trick is WHEN is that some point? No one knows. We're too busy to do the flipping, but also too weak to pass up a good cabinet...

We had our massive Indian food feast.

By flashlight (it's getting dark so early now boo!), I dug and planted 50+ irises. Plus watered them.

I haven't been able to be this active since May! This is a huge change.

Downside? My hand hated all the activity so I'm trying to take it easy today. I'm cleaning and organizing and plotting the cleaning and organizing and gardening when my hand is too pissed to actually do anymore. Gosh. It's so frustrating to be sidelined all the time by one random thing or another. I'm so tired of it!

All that said, I slept all day the day before the colonoscopy. I mean ALL day. Yes, literally. I was just OUT. I couldn't wake up to save my life. I have no idea why. It was the sleep of the sick. The kind of sleep you get when you have a cold or the flu that just drags you under, except I wasn't sick as far as I could tell. 

Was it the clear liquids cleanse you have to do for colonoscopies joining forces with the prednisone leaving my system? Were my electrolytes off? What? Aside from surgery or serious illness, I've never slept all day like that.

But it hasn't happened since and my oxygen is up and I can tell the difference and I can eat. In fact, I'm going to go have some paneer tikki masala leftovers next. So huzzah.

Epilogue...

And then my oxygen dropped again. I felt the difference which prompted me to check. So. Like. It's not dropping as badly as it was as far as I can tell. That's progress still, right? And I imagine it'll pop up more often now?

Sigh. I hate covid.

Fire Alarms with Anesthesia

No polyps! 

None.

Zero.

The ONE place my body isn't growing anything.

Which is a little weird, but...Hallelujah!

This makes the pancreatic stuff less of a cluster.

(And while the prep was hard on my electrolytes and unpleasant, it didn't hurt. My previous experiences were painful for some reason.)

Meanwhile, the person who was supposed to pick the teen up from her in-person class decided I'd never asked them to do that and didn't show. 

Sigh. Old people who have memory issues, but who aren't fully senile nor ready nor able to know that about themselves are tricky.

And for the record, I asked hubby to send a reminder, but he decided I was over functioning and didn't do it.

Y'all.

Sometimes I cannot. I just cannot with this universe.

I mean. Can I over function? Yes. Am I detail oriented? Yes. But this shit is WHY. Try to keep up.

Anyway, we got the teen sorted. Then her second college class started and everything went to hell.

First, her laptop power cord started smoking. Thankfully we were right there and immediately unplugged it before a fire could start.

Phew.

Then, the fire alarms went off in the middle of class. And not because of the laptop.

We were the only ones home. Teen is panicking because she's mid class with the world's most uptight 'you can't miss a single second of class or you'll FAIL' professor and I'm super out of it because of colonoscopy anesthesia.

We both jump up and hop around with a lot of useless OMG OMG freaking out. My brain doesn't want to synapse so I'm no help. Teen is just flat out panicking and can't function. She's pretty sure she's going to have to stay put and die in a fire or else she'll fail her class.

Finally, I manage to grab the emergency dog leashes we keep upstairs as part of our in-case-of-fire preps and I figure out to tell the teen to go to the side porch with her laptop to continue her class. We have no idea what, if anything, is on fire. 

I do not grab the fire blankets. Or the fire extinguisher. Nobody has shoes. I can't find one of the dogs. We're moving very slow. It's just a mess.

And I smell smoke.

For the record, I'm usually very good with fire alarms. I've been in some fires in large venues, so I always take fire safety seriously. I'm the one reminding everyone to grab some shoes and their purse and also making sure everyone treats the alarm as real. But apparently anesthesia breaks that part of my brain. I literally couldn't organize myself or anyone else.

We also have the world's most sensitive and annoying fire alarm system. Old houses burn fast and this house is large enough that a fire could start in one area and by the time we noticed, it could be too late. Ergo, we paid extra for linked fire alarms. If one goes off, they all go off. 

That seemed like a prudent thing to do. Except for the part where we get dozens of free fire drills and can't make it stop. These things go off if you look at them funny. They don't like fog. Or humidity. They can't handle dust. They beep and chirp for no reason, forcing us to constantly check the batteries and hardwiring. We get to run a fun gauntlet called, 'which one of three stories of fire alarms is chirping?' 

There's enough running around that playing smoke alarm Clue could be an Olympic sport.

Fun fact...a friend of ours has this kind of system and has completely disconnected it. They couldn't take it. I can understand why.

Anyway, it turned out someone else's bonfire smoke had billowed into the house (from where, I have no idea) and that tripped the alarms. We shut all the windows and the alarms went silent on their own (no clue how that happened because that's not supposed to be how they work, but whatever).

And the asthma, thankfully, decided not to freak about the smoke.

So all's well that end's well, even though there's always drama somewhere, somehow.

Next up, a well deserved chicken tikki masala feast from our favorite Indian restaurant. I'm SO HUNGRY.  I starved for the colonoscopy because I didn't want any problems with the prep. I ate yogurt and nothing else for a week prior. Maybe I am crazy after all...but either way, I am going to FEAST tonight. 

I think I'm done with super disruptive medical testing for the time being and won't have to stop/start eating like this for a while. I might have a shot at stability on that front...

PS: Teen got 98% on their first college test. Woot!

 

Study Buddy

 I was prepared to shelve the sleep apnea, BUT I've been offered a medical study that doesn't involve surgery. I'm going to explore it and see. 

The main thing is I need it to be turnkey and not fussy as it has to be something I can keep up with even as other bullshit flies off the rails. Plus, I'm sure they don't want someone disappearing midstream or suddenly unable to finish the study.

Crossing fingers.

Teen had their first college class (which was math) and absolutely slayed. :)

It's online and I sat in on the first half hour which is how I know. I want to be oriented on things so I can help them navigate this new stage of their education. This is their first college class and they're still a bit young. But. They are so with it that I suspect they won't need me much.

Give Her a Hand

 

Still doing colonoscopy prep. Ugh. If it seems like I've been doing this way too long. Yes. Yes I have. However, this blog is disconnected from the actual timeline so your sense of time is especially distorted. Mine isn't, but I can tell you, the actual reality is still awful.

Anyway, I'm loopy because I think I'm having some kind of prednisone detox thing intermingling with my hand injury and the very low calorie, low residue diet of the prep.

Dizzy. Exhausted. Foggy. Sweats. Cold down to my bones. Heart is feeling fast and bumpy. My system is dumping water. Just super out of it. I actually napped even, which I haven't done that in months.

And I'm so hungry. So so hungry. Man. Why couldn't we have timed the colonoscopy with the kidney stone? Back then I didn't want to eat ever again.

Why can't we call GI and be like 'yo, I just had the stomach flu and I am PURGED, bitches so let's do some butt stuff' and just do it all in one fell swoop?

Right now I'd eat a live cow. I would even consider cannibalism. Can you eat wool carpets? I have one in front of me... (Side note: During the famine of 1315--which was kind of wild, highly recommend that rabbit hole--people boiled their clothes and shoes to eat. So I guess...yes. I could eat the wool carpet. I never thought of clothes or carpets as having calories...I suppose they could have some kind of nutritional content if they're animal or plant based with food safe dyes though.)

I've stopped the Tylenol and Advil for the colonoscopy. So I have a withdrawal headache as well.

And my hand isn't quite ready for zero pain management, but oh well. The butt stuff must go on.

What's interesting about the hand is while I have some swelling and my veins look weirdly squashed under my skin, it's my wrist that hurts the most. My wrist had no direct contact with the stone slab. Pain is telegraphing. Makes me wonder if the physics of the force involved were traveling up my arm. Domino theory of injury? Is that a thing?

Mobility has improved. I'd say I'm at 90% of my normal range of motion now. Strength has decreased along with function...in part because I have more pain now. 

PS: I needed salt. It took forever for me to figure that out. I feel dumb lol. But pickle juice and adding salt to my tea helped a lot. Oddly...I tend to be low on salt more so than potassium. I seem to have lost my taste for salt the last few years and have naturally stopped adding it to things. But potassium I stay on top of, so when things go off kilter (and certainly steroids and a colonoscopy prep diet don't help) it's salt that can be my problem child.

PPS: And then I needed potassium. The thing is I had potassium already. I always lead with potassium. My electrolytes are all over the place today. I hope they settle down.

And I'm realizing that maybe some of my fatigue/bad days might be electrolyte based. I think I need to try treating it with potassium and/or salt and see how it goes. Because right now I feel sooooo much better. I'm not tired at all. 

Unfortunately, I hadn't made the connection before as usually I'm eating and assume I've covered it (as I do loosely track intake on both as I've learned I won't feel good if I'm not making sure there's some incoming) or I'm sick and assume feeling like ass is from that. I never think things could be off. So this has been eye opening.

Or maybe it's the last of the prednisone purge? I'll have to experiment and see if I can fix how I'm feeling with electrolytes once this butt stuff finally ends.

Would You Rather Hindsight Edition

Note: Loopy doopy as fuck right now. Spew quality may be poor.

Today's burning question...

Would you rather have a serious but concrete medical problem like a heart attack OR be diagnosed with a laundry list of conditions that, until recently--for physicians who keep up--were considered signs of a psychiatric problem? And no, healthy isn't an option.

Guess where the teen lands?

Not that she was ever given a choice.

On the one hand, she is receiving some of the best medical care I have ever seen in my life. Did you know that sometimes pediatricians coordinate? Like, the specialists talk to each other and it's NORMAL. It's a fucking STANDARD. It's like kids get 24/7/365 tumor board type case discussion. It's wild.

I'm speechless. I had no idea. We've never been this deep in with pediatric specialists. Just one off appointments.

So the functional woo but board certified PCP ped (who honestly is fucking brilliant even if I'm not so sure about the Chinese herbs, but you can SEE the intellect there), the infectious disease specialist, the cardiologist, the rheumatologist, the PTs (although note, that part isn't going as well as it could, but still, there's a loop and they are in it)...they are all talking.

We had multiple same day appointments and the one ped had already messaged the other ped and they had read it already before they walked into the room. It was like the most functional game of telephone in the history of the universe.

This thing where I have a colonoscopy with an electrolyte disrupting tumor  or surgery with cranky asthma and no one knows what to do and just barrels on anyway and if you have problems, oh, well sucks for you...it wouldn't happen if I was twelve. There would be a discussion and a care plan. 

They really throw adults to the wolves. By design.

The one specialist thinks long covid might bring this ped style coordination to adult medicine. I guess they're finding they have to integrate and coordinate across specialties to deal with long haul. Siloing patient symptoms and treatments as if they don't touch in the same body isn't working so well anymore.

So anyway, the specialists have been able to zero in on several diagnoses now that would get her a psych diagnosis from pretty much any doctor as an adult. Primarily triggered by Lyme (with a dash of covid) and then the way all that impacts her pre-existing joint issues. Fortunately, the science is starting to catch up so she should be treated better than previous generations of patients and maybe even see more effective treatments at some point.

The plan is to try a medication for one thing as lifestyle changes weren't enough. 

Plus finally buying knee braces. We had some intense yes-no-yes-no back and forth between two warring physical therapists on braces, so we took it to the specialists for the tie breaker. She does appear to meet the criteria for a connective tissue disorder.

I cringe as I type that as I'm hyperaware of all the eye rolling that goes on among anonymous care providers on the internet around diagnoses like Lyme and Connective Tissue Disorders (of which Ehlers Danlos Syndrome is one). 

All I can say is that we're at a top hospital system with physicians who've kept up with the very latest science (and I imagine are probably generating some of it). 

And as someone who has tracked medical science across several decades now and has seen some things... 

I think in ten years (maybe less) the care providers making fun of patients and stigmatizing them because of these diagnoses are going to have a lot of egg on their faces and more than a few regrets. And there will have to be some type of restorative justice or reconciliation for all the patients the stigma was allowed to harm. Especially as so many will still be around to know exactly how much they got fucked by science.

I mean, I doubt any reconciliation will happen, because medicine's biggest blind spot is always that they think they know everything coupled with the belief that doing better excuses the past. But that doesn't mean amends won't be owed, just that they will never be made.

I don't know. Maybe don't cope with the stress of your job by making fun of anyone with any diagnosis, even if you're anonymous...

If you're feeling brave, come eyeroll your disdain in my face and see what happens...

Okay. Okay. Are there problematic patients with these diagnoses? Yes. Absolutely. I deal with them in patient groups. But stop defining a whole diagnosis and people you don't know only by the most extreme, most unhinged patients you've met. Some of whom are so young, they don't even have a fully developed prefrontal cortex. Please tell me we're not being assholes to a 30 something patient because some kid somewhere is acting out and has gone viral on social media.

Well, I mean, of course we are doing exactly that. Because that is actually a thing that would happen.

Look, just because there are unhinged people with a diagnosis doesn't mean anything when it comes to the science or the ethics of care or the standards of human decency. And while some of the science is still emerging and far from standard, if you just read the most recent studies, if you just look at the science, you can clearly tell at some point there's going to be a breakthrough. The future has post Lyme syndrome and probably more EDS than anyone wants, including the patients themselves.

It's coming, and if I were a care provider, I'd be asking myself who do I want to be on these issues in hindsight? Do I want to look back and see I was making fun of people, or dismissing them with anti-anxiety pills, or do I want to be the person who could see the emerging pattern and who ensured I was ready to implement what patients are going to need, what they deserve?

My kid wanted to be healthy but she's not going to get that. Some people don't get a choice of what they see in hindsight...

(And yes, I posted earlier about the teen quitting the medical hamster wheel. That's coming. We're going to tie up some loose ends and hopefully pull back after that. It's not sustainable even if we wanted to keep going. The teen had five medical appointments this week. That's 15+ hours with travel time. Then there's me and my medical shit...that's another ten hours. It's just insane. We can't do this forever. Who knows with me, but the teen has a shot at reclaiming her time so that's what we're aiming for. The shot just won't land for a while.)