Shifting Energy

So I had an asthma attack. Ha. That was a surprise. Best I can figure out is I inhaled some kind of particulate baking. But man am I getting old. There's no bounce. It completely sidelined me for a full day and I couldn't beat it back no matter what I sucked down. I had to take prednisone which took forever to kick in for some reason. 

I finally did my labs. All good. My sodium is persistently low and I can never figure out why. But that speaks to how when I'm woozy, it's either salt or potassium I need. My A1C is finally in the normal range for the first time I think ever. I've been a solid 5.7 my whole life. Now 5.5. It's kind of amazing.

You'd think I'd feel better but disappointingly, no. 

They didn't test the liver stuff at all, which was annoying. Especially as I've been increasingly symptomatic since Covid. If I can ever get through to the hep, I'll ask for an order. I don't like being this symptomatic with all normal results. That's what got me into this mess. Why does my body do this to me? Refuse to show a card while brewing the most absolute foulest bullshit.

I will say, with regards to Covid...the pulse ox now registers things like 98. Or it'll show 97 and then go UP. It didn't ever go up for the longest time, only down. So that's exciting. However, my sense of smell seems to have gone wonky, which is so weird to me this late in the game. It's very in and out. I'll be able to smell something for a second and then it's gone. Or I can taste one thing and not another.

Anyway, trying to gear up for the end of the holidays and have us all ready to hit the ground running once 2023 is officially here. 

Teen...we decided to switch colleges for her dual enrollment. We started digging into degree programs and program requirements at different colleges in the area and there's a clear winner with a satellite campus fifteen minutes from our house. If we do all the dual enrollment course work there we eliminate any credit transfer issues for her Bachelor's. Seems like a smart move

But it has raised the issue of how much can she handle. If her muscles and joints don't stabilize, they're going to make things hard. She gets really tired and that triggers the dysautonomia which hits her heart hard. In fact, she's been going to bed early for weeks now and only just last night had the energy to stay up with us to watch a movie as she's finally coming out of whatever this latest flare was. Logistically, when her muscles are that tight, she can't coordinate well so things get broken or dropped. She just about wiped out the Christmas tree at one point and broke a bunch of other stuff this past week.

Handling a full-time course load and navigating a campus is going to be tough. I've been talking to other parents who tell me their kids had to go part-time or had to take breaks.

For the Bachelor's I think we're okay. She can live at home where we can support her. Also, we'll use all four years of high school to take 2-3 courses a semester which will hopefully knock out ~2 years of degree requirements. Then she can take 2-4 years to finish the BA at her own pace and still be on track in terms of the traditional timeline.

But she wants a Master's. That's probably going to be out-of-state. As things stand now, I am not sure she can handle working to cover her expenses and graduate school. She's not going to be able to burn the candle at a million ends. So we are having a lot of discussions of alternative career paths that would allow her to stay close enough for us to support her. Or maybe we move to where she goes. We're open, but either way, unless things improve, she's going to need extra support. One mom I talked to said she took care of all the day-to-day stuff; cooking, cleaning, errands. I think that's something the teen may need.

That then raises the issue of developing independence. As I told the teen, at some point you're not supposed to be with us, you're supposed to be out on your own, separate from us figuring stuff out. It's tricky. Where's the line between helping and hurting? It's very hard to see when there are health issues in the mix.

As for me and 2023...I'm just here to make money. I don't care how I do it. I'm hoping to get big ticket items up and running. I have one I did a soft launch on and it's slowly selling. I'll throw some marketing into it once the holidays are done and hopefully that'll be some good income. I have another one ready to go, just need to set it up on a platform. 

My struggle is I need to make my peace with the fact people aren't interested in solid advice based in reality, they are solely interested in what they think is important and you can't tell them any different. I need to stop being precious about this and caring about quality and just meet the market where it's at.

People want to chase dreams. They don't actually care if they ever catch them. They confuse the dopamine hit of buying a thing (class, information, what have you) with progress. It drives me nuts, but I can't win so I need to make my payday where I can get.

Food Is Yum

I can eat. Thankfully. Things are still touchy but I can eat. That was a long...whatever it was. 

I did try to call the hep but they're out for the rest of the year and so is their secretary.

Man. Will anyone be there when I need them? It appears not.

I was supposed to have a follow up appointment soon, but I couldn't get it scheduled because the calendar wasn't open, then the secretary wasn't there, then they told me call scheduling because I just got back from vacation and I'm busy EXCEPT scheduling can't do anything because the hep is 'retiring but not retiring' so there's like some kind of presidential pardon and MI6 double agent thing that has to happen to make an appointment, and then it was we're not scheduling until later so call back, and and and. 

Meanwhile my gut is brewing fuckery. Sigh.

On the teen...Started leaving messages for the physiatrist and we had a follow up visit with Infectious Diseases and are looping back around again to cerebral palsy for the kiddo. Ha. Just when we think a diagnosis is coalescing we get a plot twist. We have a genetics referral as well because why not at this point. Various specialists have brought it up so it seems dumb to not at least talk to Genetics. And ID wants to do some outpatient IVs. 

I keep trying to figure out an end game. When can we stop? How long can we go with nothing tests for all these symptoms? What's the cutoff where we can say we tried, but the science isn't there so let's just live our lives? Will anyone ever do an MRI if cerebral palsy isn't going to go away? The teen is tired of it. I'm tired of it. But we do still have some things that we haven't tested so we need to keep going. Maybe it's worth it? It feels like it'll just be another dead end though.

Like, yes, the fever has dropped. She's been at 99.7 for months instead of 100.4 and 100.6. So that's good. Her joints finally feel better. But yet we still have all these issues causing major problems. How do we get any stability? We can't seem to stabilize. PT is useful but it's not even close to being enough. Medications are useful but we have a lot of breakthrough. It's very frustrating.

On the narc front...the narcs are rampaging and have thrown everything into chaos. So lots of family drama times multiple narcs. 

I'm tired. People suck. Science is slow. But at least I can eat and the teen feels less terrible at the moment.

Thar She Blows

Still having intense GI issues. Bah.

Whatever is going on, it's put me flat on my back. I can't function past it. I'm laying in bed for the most part feeling pretty rough. Liver pain, for me, often feels like rotten fruit in my gut, rotten fruit that's swelling and ready to burst. It's an awful feeling. 

If I didn't know better, I would think this was an emergency. But my tumors are supposedly stable, my labs are good. This isn't liver failure or a serious tumor rupture--most of the tumors are too small to really make me bleed out if they blow (we think). It's more likely irritation or one of my little tumors imploding. Or the pancreas shooting mucous loogies. There's nothing anyone can do as far as they know.

Which means I haven't called the doc. It seems pointless. I'm trying to decide where the line is on that. What crosses it in my situation? Hell if I know. I'm a tweener as always. Sick but not sick enough to know the exact right thing to do.

I just have to muddle through another ruined day or week or month.

Sigh.

On the up side...potential breakthrough with the teen? I've been reading all the things trying to find a tweak or tip or hack and I finally found one--Bracing. If the muscles are spasming so intensely to compensate for perceived instability...what if we brace and change the proprioception? So we did and that seems to have flipped the switch so the muscles can finally let go. Hallelujah. Finally something that helps.

To that end, I've ordered a million different knee braces because, as I suspected, the expensive ones aren't comfortable. Probably what I've ordered is garbage, but I can't not try. We need a physiatrist and higher quality custom braces...which is what the physiatrist told us. But we haven't heard boo from them since they said that. I'd like to bug them about it if my body could please stop its bullshit for an hour or so.

Christmas Chicken

I managed to pull off a good chicken dinner pinch hitting for the lost holiday food delivery and wanted to get the recipe down as this turned out well enough to make again. Which I'd like to do soon so maybe I can eat some.

Yeeeeah. Unfortunately, I've had to stop eating. I've been having a lot of issues with the GI stuff the past week or so that I've done my best to ignore, but it's just becoming more and more of a problem.

So far, I'm staying out of the ER, but I'm currently trying to extrapolate what I do if it's not resolving during regular business hours. Can they do anything if I call? Is it worth the hassle? Do I really have to? Would the retired-but-I'll-still-see-you hepatologist even be available? Meh.

But hey, at least the family loved this and it saved the day...

Greek Aioli Veggie Chicken

For the protein:

-Thin cut or pounded flat chicken breast

-Olive oil*

-Salt

-Spices---either a Zaatar blend or Greek blend or Italian blend (in order of best, better, good)

Oil and season chicken and either pan fry or bake in the oven between 400-450F for 15-25 minutes (depending on your stove, mine needs to be 450 for 15ish minutes, but yours might be different. 400 won't hurt anything. If you're not an experienced cook and/or don't know your stove, start with 400 and check at the 15 and 20 minute mark).

For the aioli:

Aioli is pretty flexible. More so than tzatziki which is why I went with aioli (and also it's not like I could dip out to buy stuff. Between Christmas and the pandemic, nothing is open anymore here so I had to make do). Use what you have, but you want some fat in there somewhere, garlic, salt and pepper, and if you have some fresh or freeze dried dill or cilantro, that'd be nice.

I did a 1:1 of mayo and sour cream and added the spices to taste. For 4 people, I'd aim for a full cup of aioli so 1/2 cup of mayo and sour cream each.

Greek yogurt with a little sour cream and a touch of mayo would work as well. Some may find that Greek yogurt alone is sufficient, but I like to add fat to it.

For the veggies:

Finely dice peppers, cucumbers, lettuce or kale, and really, any raw veggie you like. Set aside.

In a separate bowl, grate approximately 1 1/2 cups of carrots. Add 2 tbsp red wine vinegar and salt. Taste. If too sour, sprinkle in a 1-2 tsps of sugar. (Red cabbage would be a good substitute if you really want to watch your carbs.) Don't skip this! The acid in the pickling balances the spices and the aioli.

Optional:

Kalamata olives.

Feta cheese.

To serve:

Chicken on the bottom as your foundation. Top with the aioli as thick as you like. Add your veggies and olives and feta if you're using them.

(If you're eating carbs, you can also pile this all into a pita or serve over rice.)

And that's it. Bright, fresh, flexible, light, full of veggies. We should eat so well every night, right?

*Shout out to a really good quality olive oil. We usually use the Costco brand, but I recently bought some higher quality olive oil and the difference is amazing. I don't think I can ever go back to budget olive oil again. Look for a California or single source Greek olive oil. I've really been amazed at the difference...roasted vegetables with a better olive oil have been a revelation.

And then...

The storm blew out a basement window.

The pipes froze.

Hubby dealt with it. No harm done.

A radiator started leaking. Gotta love 1800s steam heat. We can't mess with it until it's warmer so we're just avoiding the puddle.

The food didn't arrive. Every year around this time, I use a food service for a few weeks. It keeps meals healthy and organized when my interest in figuring out food is low.

No biggie. I'm just flailing a bit, trying to figure out a new menu based on our pantry. 

Never a dull moment here. 

Meanwhile I ran across a discussion on a forum with doctors trying to figure out how to stop people from hating them. The entire thread...not one mention of any self awareness. Not one person thinks they've missed a diagnosis or that medicine can be horrible to people even if it's got the right diagnosis. It's all patients are stupid narcissists. 

My theory is good doctors don't have time to bitch like Mean Girls. So I try to take it as these are the dipshits of medicine. But I don't want there to be any dipshits of medicine. 

I kept scrolling looking for one person to say 'hey sometimes we suck, sometimes even if we're doing our best, we fail people, we need to help patients navigate the system  and keep options open so when people do fall through the cracks someone, somewhere can catch them, not serve as locked doors and you shall not pass.' But no. No Christmas miracle happening there.

I don't know. Pay off your loans and gtfo if you hate it so much? Go overseas? You're presumably healthy and educated and you're earning at least $150,000 a year...do something with it. I can't imagine having so much only to be so petty.

Christmas on Ice

One of my small parenting regrets is that I didn't keep a diary recapping each Christmas and birthday and year in general across the teen's life. I think it would've made for a nice memento of her childhood...

This year, I find myself looking at all the handmade ornaments on the tree and getting teary-eyed with nostalgia for a time when neither of us had this much health stuff hanging over our heads. She's in a lot of pain right now. Something with her muscles flared with PT this week and won't let her go. It's a low point in our year of trying to carve a path to better for her.

Nothing helps. We have no home remedy or over-the-counter option that does anything. This is when I become unsettled and loop back around to 'we've missed something, this can't be right.' But for now, there is nothing to do but endure and hope her body sorts itself out.

We are largely ready for the holidays and fortunate to be able to hunker down while this storm does its best to turn the world into an ice carving. Hubby is off until next year and hoping to finish our primary bathroom upstairs...which would be heaven. 

I am working, trying to wrap up a special project and mostly enjoying it. Also baking. So. Much. Baking. And cleaning everything from top to bottom. And wrapping gifts. And, and, and. This time of year, there is always something else to do. 

Teen is mostly resting and frustrated BUT got all As in her college courses. She emerged victorious from her first college classes. She stayed on top of her work flow without prompting. Prepared for tests and finals on her own. Lots of kick ass executive function skills and independence. 

Currently it's -4 F with a -30 windchill and 12" of snow courtesy of winter storm Elliot. Not the worst we've seen in our area, although I think the windchill is the lowest in my lifetime? Maybe? It's down there, though.

We spent the days leading up to the storm mulching and insulating our fruit and nut trees and bushes. Since this is their first winter, they are especially vulnerable. Ergo, we made a lot of 'sweaters' for them out of straw and burlap and plastic containers. Hopefully they pull through.

It felt good to be out in the garden--to lift and haul things and dig and hopefully contribute to our food supply next year. My knee is still a flaming asshole and I had some issues with feeling like I was going to pass out, but I wasn't panting as much as before and I want to say I went longer before things got weird.

As for Christmas itself, the goal was to keep it simple. To not buy a million gifts and shop the post holiday sales instead. Aside from the babies in the broader extended family (who get aaaaall the things), I was fairly faithful to that goal, but hubby always gets a little gift happy and has been ordering up a storm. Oh, and buying things at estate auctions. And running out to stores. 

He accidentally killed my poinsettias and felt so bad, he's been a little obsessed about replacing them. I came downstairs today to find fancy Christmas floral arrangements all over the dining room. In the middle of a blizzard, mind you. Hubby under the influence of Christmas is something lol.

We have our Christmas Day project all set. Building an engine. That'll be the teen and hubby more so than everyone, but that's okay. (I'll be busy making gingerbread--we're drowning in so much food right  now, I've spaced out some of the baking.) 

I've always tried to have a project or activity for Christmas Day. In part, because I had an intense kid who didn't like being at loose ends--I've been mercilessly trained to keep her busy lol. And in part, because it's fun and keeps us from all retreating into our screens.  

We learned Christmas Carols on recorders one year (which was fun, but yes, I did forget how painfully shrill they are), made no-sew blankets, decorated cardboard castles one year and pirate boats the next, did puzzles, solved mysteries, had scavenger hunts, DIY ugly Christmas sweater contests, worked our way through different classic movies, did our own version of robot wars.

This year, an engine. Maybe it will take us somewhere better...

Tap Dances in Clinical Studies

Today was just one of those days where life was throwing guillotines at my neck at warp speed. Just constant, random chaos and drama for no good reason. The world just decided it didn't wanna.

I managed to get everything under control and also enabled the teen to live her best life to boot, but man, am I beat. 

And then the dog snatched a chicken bone. Sigh.

So now we are on 'do we need to go to the vet ER?' watch.

This is the tricky part with rescues. You deal with the deficits in their training and life experience and whatever trauma on top of it. It's really hard to take an adult dog who will gulp down anything they find on the floor and teach them restraint. 

I pick up the floor constantly. In fact, I'd just picked up a screw I'd found in the dog bed (gotta love a never ending home remodel). Like, I'm on it as much as I can be. And we work with him constantly. He knows the words now. He just doesn't have the impulse control. He didn't get the 'parenting' or training he needed when he was a puppy and now it's a constant risk with him. We watch him like a hawk, but this time he was faster than we were.

Poor guy didn't even know how to go up and down stairs when we got him. He didn't know any words. And he was three-years-old. It took him six months to understand 'go see Teen.' It's hard to protect him from himself when he's so behind.

Like, if you've ever wondered how much trauma can really impact people, work with rescue animals. You'll see a wide spectrum. He's a very sweet, loving dog, but he's nowhere near as smart as he could've been. Our other dog is a rescue as well, but the dynamic is different. There was a lot of domestic violence in the breeder's home and she wasn't properly cared for, but we got her young and she's done well overall (other than breaking several of our bones lol). 

You should see them though, because they are the yin and yang of trauma response. One downregulates when stressed and becomes a lump unless they're scared, which then they adopt aggressive postures. We don't take this guy for walks off our property. He's too scared of everything and is too reactive to other dogs. It's not safe for anyone. So we keep him in a very stable, low key environment.

The other dog amps up and goes a 100 miles per hour; pacing, refusing to settle, won't sleep, hypervigilant, obsessive, hyperfocused. She's whip smart with the receptive language akin to a toddler, but with zero judgement (also much like a toddler) and she gets mad and petulant and destroys things. 

We actually pulled back on training with her because I was afraid she'd learn to open drawers and doors if we kept going. (And she can, in fact, actually open doors, but thankfully it's not a major issue. There's no payoff for her in our set up so she doesn't engage a lot with that behavior.)

It really goes to show how important the first year of a dog's life is (not to mention humans, but I think humans have a longer period of neuroplasticity across our life span, it's easier for us to change than it is for dogs).

ANYWAY, let's talk about the pancreas. I've been looking for clinical studies as I think I might be a good candidate for some research. 

So far, it's not been going well. First, all the pancreas resources and organizations are heavily skewed towards active cancer. Which I understand and I get, but they've been slow to incorporate those of us who are pre-cancerous when we're probably a good group to study for the prevention, progression, and early detection of pancreatic cancer.

So all the patient developed clinical trial resources don't incorporate patients like me. Like, I literally can't complete their screeners because precancerous isn't even an option. I am forced to select a stage if I want to see clinical trials. Which means none of the clinical trials for the precancerous stage are in their database (I presume, otherwise their screener would be different, yes?).

Also, it doesn't look like the trial information is getting updated as much as it should? I could be wrong on that, but that's my impression right now. 

And if you talk to patients, they just refer you to the same resources. Unfortunately, most patients don't make it and that's impacted the efficacy of the patient community. (Weird things I know about: Patient subcultures. Who knew that would be a thing with flavors???)

Meaning, I have to research everything on my own from scratch which is a huge pain in the ass.

But I found one. I reached out. I come up a tiny bit short on their requirements right now, but if things progress, I'll meet them sooner or later. They do actually want to talk to me so we'll see what happens. 

I just want to have the next steps kind of laid out before I need them. It's a planner personality thing. I find it less stressful and less overwhelming to be oriented in advance. Maybe that's my trauma response. Ha!

Also clinical studies are their own breed of chaos. The NIH was difficult to apply for and then they ghosted me. This other study I'm supposed to be in for the sleep apnea...haven't heard a peep from them. I was told there were funding issues. 

I think the general public assumes you just enroll in a clinical study and done. Ha. Nope. In my experience, it's always weird and sideways and they can be difficult to coordinate with. And for some of them you need your doctors at home to buy-in and it turns out those docs aren't always so supportive or interested in helping you. 

There can be some risk for them in meeting study requirements. For example, your doctors might have to mess with your medications to meet study requirements, which if you have problems, is on their head. So aside from outright asshattery, there are legitimate liability concerns in some cases. Also it's more work for them. Some docs don't want more work and are unpleasant about it. 

Like, everyone thinks you can count on your doctors or that there will be functional systems in place  to drop you into the exact right clinical study within five minutes of deciding you should find one. Because that's how it is in the movies, right? 

Ha. I wish! 

You know, everyone is blaming Covid for the issues in medicine, but all the problems people are having were already there. It's just not enough people were sick with the same thing to notice and then be a big enough group for their complaints to register before. Now we have this massive population dealing with the aftereffects of ICU admissions and Long Covid with lots of symptoms that cover a large range of medical specialties and a lot of them are from the...urmm...more aggressive, entitled side of our culture and they're not having a good time. 

And medicine was already problematic and pretty terrible with complex, multi specialty issues. So good luck with that one. We're going to need it. The idea most people have of medical care isn't reality.

Anyway, lots of good reasons to be proactive and work ahead as best I can. It's unfortunate that the whole clinical study system is so disorganized. I imagine a lot of patients can't figure it out which is a lost opportunity all around.

And the Expert Says What?

So yeah. There's either Ehlers Danlos going on or some other connective tissue disorder. We finally saw a physiatrist, which there's no peds here so we're in adult medicine. Fortunately, we got lucky and they were excellent.

However, they're referring us elsewhere as we came in sideways to that department via peds and they aren't the right people. But they seem committed to making sure we end up in a good place. We'll see.

It sounds like mostly they want her to have better knee braces than what she has. And possibly PT for the rest of time. My kid will pass on to glory someday (hopefully a long, long time from now) and will spend her afterlife doing PT. Like, they'll meet her at the gates with resistance bands. She's never going to escape. Ever.

Unfortunately, this doesn't fix some of the other stuff that's decided to act up, but for the first time I feel like we've had an actual topic expert go 'yeah, we know this, it's EDS or similar, definitely braces, more PT, maybe genetics.'

So yeah. My kid has the trendy TikTok diagnosis. For real. Blurgh. Dealing with the pop culture drama around that is going to be unpleasant. (And I will note she hates social media and thinks it's super lame. You won't see her dancing on TikTok.)

Also, it was hard to watch them mess with her joints. They took her joints in directions that aren't supposed to be possible. The laxity is...extreme. I'm a loser because I get icked out. I can't watch.

And the whole thing is odd because you'd think hypermobility would be associated with gymnast type flexibility, but these patients keep their muscles winched tight to support their joints. So yes, they are super flexible in many ways, but also super tight in different places as well. Their bodies are just desperately trying to hold on so they don't lose any Lego pieces.

The appointment confirmed we're barking up the correct tree for realsies, but it was also really painful. The manipulations they did really messed her up and it's finals week for her college math class. She had a test and then a final immediately after. She managed to pull off an A, but she was in tears waiting for her body to calm down. We did heat, massage, Advil, Tylenol, vitamins...nothing helped. Her muscles just seized up and wouldn't let go. I felt so bad for her. Nothing worse than not being able to help your kid...

As for me and my joints, my knee is still acting up and was making a fuss during this appointment. Ha. Someone in a wheelchair asked for help at the hospital door, so I helped wheel them in and down a long ass incline. Then we got lost and walked the entire campus. Even the staff didn't know where we supposed to go. We kept stopping and asking and no one knew. Finally the police pointed us in the right direction. 

My knee, which had been feeling okay, absolutely hated every bit of that. It feels like I've dislocated it again, but I didn't. My teen is walking better than me right now, which is saying something. I didn't know my knee was that bad off until it was too late or I would've found someone else to help.

I don't know, man. All we can do is limp along, literally and figuratively. Hopefully better days are ahead for the teen. Hopefully my knee stops the bullshit. All I can say is we are trying as hard as we can to get somewhere better. It sucks how much of a slog it's been.

Creaky Check In

Still have the swollen lymph gland. I need to do my annual blood work first before I bug a doc about it though. Seems out of order to not do the labs up front. So I'll work to get that done.

I'm still assuming it's Covid related.

Which is weird because I've maintained feeling better so...que????

The fucking hell, Covid?

Family trip went well but I'm having my first arthritis flare (I assume) from walking around in a 5 degree wind chill for 5 hours at an outdoor museum thing. I did not know that cold weather could be a problem. I also was not aware that I had all that much arthritis in my knee. It was all news to me!

Welp. Now I know. Great. 

Hip and knee and foot gave me a lot of grief. Sadly, I'm approaching the point where I may need a scooter or wheelchair. I can walk but not forever. I struggle with standing in place. Hip does great for day-to-day life with the PT exercises, but doesn't handle theme park type stress well at all. And I don't think my foot will ever heal. I suspect that the degenerative spine plays a role in everything as well. Not to mention injury history, particularly with my knee. Oh, and the way the vaccines kickstarted a lot of this BS.

For the record, we did dress appropriately. We knew it would be cold. I had two hats, gloves, used an n95 to keep my face warm, plus a thick sweater, and a winter coat. I wasn't cold, but aside from my jeans, my knee didn't have much protection and got blasted with freezing wind.

But the teen had fun. Health crap aside, she's having a great year. She's even been invited to hang out with some friends! So that's exciting. We're making inroads on establishing ourselves in our new town/home. 

And no, no news to report on her health stuff yet. Stuff is still off the rails but she's not letting it stop her as much as she can manage.

Fine with Lumps

 I continue to feel more normal and less WTF.

However, I have an enlarged lymph node on the back of my neck.

Ironically the same one that was golf ball sized when I had mono as a kid.

Right now it's about the size of a plum pit? Maybe a bit bigger?

Anyway, I'm going to assume it's some kind of covid whatsit and ignore it for the moment. Hopefully it'll sort itself out and go away.

We are on the cusp of leaving town for a good time and unless there's an arterial bleed or something, everything being weird in my body can just sit down and shut the fuck up thank you and good night.

Progress?

I think I feel better? Like really better? It's only been 4-5 days so...I don't know. Is it real?

This is so weird. I'm on a new planet. One with free energy. What language do they speak here? What do they even do with themselves? Wow gravity is so much lighter here. I'm bouncing...

I hope it lasts.

And I bought some new clothes! Everything is either too big or too small. I mean, if I'm home, I've got baglady chic outfits for days, but if I have to people, that stuff is very sparse. A simple joy (that cost an arm and a leg because yeeesh inflation but nothing's perfect, right?). I haven't treated myself to much lately.

Work is going well. I've figured out a bunch of stuff and I'm FIRST lol. I get off on innovating and ideation (the business type not the psych type) and creating process flow. It's how I procrastinate on the other half of my business and I'm amazing at it. The procrastination I mean.

The sharks are sharking...I think I ascended up the food chain a bit this past year instead of staying under the 'looks like seaweed but really isn't' cover. It's going to be...interesting. 

In terms of cognition, I can see that I'm so much sharper right now. Wow. I'm catching things on an as yet unlaunched project that I couldn't figure out before. Too foggy from Covid. Kind of crazy to see the difference.

Teen went to a semi formal dance and had a great time. She fell though, despite the braces, which isn't ideal, but overall a win. We are gearing up for a short vacation. Teen has concert tickets and we're going to make it a long weekend (all with n95s strapped on). Knock wood...this time we seem healthy enough for it. (We were supposed to go to DC previously but got Covid instead.)

I'll be meeting with one of my team as well since they'll be local to our location. Looking forward to that. And things are so busy I'll be Zooming even as we travel...hot spot willing.

Is this finally the upswing? I hope so!

Just When You Think It's Safe

Teen isn't doing so great on the health side. Sigh. I don't know. We've been battling one persistent issue that has gone through eight medications in the last year. 

They keep telling us it's going to be fine, that it'll resolve. It would look like maybe we had it and then no, no we didn't. Next med, same story. Rinse repeat. EIGHT times.

Unfortunately, I think she needs an ultrasound if not an MRI. There's some agreement on that from the doctor side now too so maybe it'll actually happen. (I would've done an ultrasound at least about 6-8 months ago. I personally feel they've left her to twist in the wind too long* and pretty much figured we'd end up where we are now. Unfortunately mom instincts aren't considered medically relevant or valid.)

And this other thing is acting up that we thought we had a lid on. I think it's benign, more importantly, the docs think it's benign, but it's hitting levels now that justify ER visits for folks who don't yet know what it is. Like, it's not cool. Benign doesn't mean asymptomatic. Since we're seeing new highs, I'm not sure what the game plan should be.

It's frustrating. 

*Ironically this is something where we're in adult medicine because there are no specialists here so she's getting the usual shitty runaround that adults get. In peds, with the folks we're working with, they would've done the imaging a long time ago. And in fact, the peds are the ones who are ready to step in and fix this shit.

Adult medicine is bullshit y'all. They deny, delay, dismiss, and deflect you right into hell. Is it the insurance companies? What? What makes it so awful? So hidebound? So quick to make patients suffer and so slow to do anything proactive? I wish I knew.

Thanksgiving with a Spine

Thanksgiving turned out well...probably the best meal we've had in years. I have no idea if I can ever replicate it. In my experience, there's definitely a magic of the moment that makes cooking a gamble.  For instance, last year, I'd had spine surgery right before and we had a grease fire in the oven to boot. Last year, there was no magic lol. It was all chaos on fire in a dumpster. 

I didn't do anything special this year. Just went with the classics. But the flow was with me. The meal came together effortlessly.

Everything was very basic. Foil on the turkey, no basting, no brining, just some herbs, butter, and stock at the bottom of the pan, and it came out perfectly. I made a simple homemade cranberry sauce, no add ins, and honestly, it was brilliant. 

You know, sometimes I think we get recipes with fifteen different ingredients because people are trying to make a name for themselves. Like, if I started a food blog and told you to just do water, the exact right amount of sugar, and year old frozen cranberries, you wouldn't listen. I have to have a SECRET, right? 

There's a lot of psychological manipulation in recipe and personal cooking brands (not to mention outright sabotage in the actual recipe, I've run into that a few times). I do have secrets and recipes no one else knows, but I also don't try to make things extra complicated.

The best example of food power plays I have is my husband had a college professor who caused him all sorts of petty grief including getting him pulled into the Dean's office. I won't get into the whole story because it's boring, but I want to make clear it was utter bullshit and the professor was really awful. 

I'm not the kind of friend/spouse who takes your side no matter what, If you screw up, I'll call you on it and then help you as much as I can. I'm not much of an enabler. I don't pander. So when I say the professor was the aggressor, that's what the evidence showed. Total abuse of power. (And it just goes to show how much emotion and power dynamics go into situations...they warp policy and logic all too often.)

Anyway the point is, I made my crackle top molasses cookies for the class. I am often told I could sell these*. I get rave reviews. All the time. Meaning the professor begged for the recipe. Begged and actually pestered. And I refused because they'd been such an asshat. My personal code is no cookies for dick taints.

Oh, another one. My one in-law won't give me their cheesecake recipe going on 30 years now lol. 

There's all sorts of psychological and interpersonal dynamics that go into recipes and food, and given there's big money in building a food brand, you can get some skullduggery as well. It's easy to forget how much of the content thrown at us is marketing something and they will do almost anything to make it work. (See also Balenciaga's latest 'we had no idea even though we spent months working on the obviously problematic details and they went through several layers of management approval without anyone noticing a thing so clearly it was NOT by design at all you see' scandal.)

But anyway, the turkey wasn't dry. The cranberry sauce was the perfect balance of tart to sweet. We had enough gravy, although gravy boats remain frustratingly too small. The pumpkin pies turned out**. We outsourced the mashed potatoes and green beans. 

Very easy meal, nothing fancy, yet perfect. (Fancy with regards to food is sometimes just be an upsell y'all.) It was nice to be fairly functional with minimal health disruption. Wish that happened way more often.

*I'm not made to be a baker lol. But also these cookies are (oddly enough) sensitive to humidity and temperature. They're not reliable. The weather affects quality more than I'd like. To run a business with them...oof. It'd be super annoying.

**In fact, hubby bought a sweet potato pie and had a personal crisis. Why did I do that when you make the best pumpkin pie??? This pie is not your pie. OMG I have to eat this pie when I want to eat your pumpkin pie instead. I don't want this pie. So he gave the sweet potato pie to the neighbor we've gotten in the habit of feeding so he could focus on just the pumpkin pies. And I've had a request for a repeat ASAP because we are now out of pie. 

Glowering

 

My nerves are on fire. Absolute fire. The vaccine has caused my immune system (I assume) to literally go nuclear in my degenerative spine. 

It's never been this bad.

So now I'm wondering...is the cyst growing back? That happens sometimes?

Even before the vaccine I had increasing numbness. It's not the same degree of hazard as the pre-surgery numbness, it's hitting me in a way that's not a fall risk (so far) so it's different, but it ain't right.

Gah. Can I just please not have any more problems? I already have enough!

As for the fatigue...I've gained a tiny sliver of extra functionality but I'm nowhere near normal. 

Since the vaccine basically booted me back to the beginning of my covid recovery, I'm guessing I'm in for another 6-8 weeks of fuckery.

And I'm deeply concerned about the impact of any further vaccinations. If it's not going to prevent covid, if it's not going to prevent long haul, if even with the vaccine I'm up to the line of needing to go to the ER when I do get Covid, and if the vaccine is going to destroy me like this every time I take it, if it's going to come after my nerves every time, and my heart, and my energy for months...is the ROI there? Is it worth the suffering? I'm not sure.

Very frustrating. At least I can keep my sorry ass at home and hopefully away from Covid and I know enough to wear an N95 when I do go out. I know I can keep myself Covid free. It's the people I live with that are the risk.

Kidney ultrasound was clean. I still need to do some blood work, but hopefully an ultrasound was precise enough imaging that I won't be pissed I didn't get an MRI (or whatever is better imaging) earlier in hindsight. Sorry. I'm just leery of this shit anymore. Particularly when I have symptoms but all the testing is fiiiiine. However, that said, I'm good with letting this go for now. Nothing urgent seems to be happening and I have other things to do.

Work...I'm organizing some neat things. Holding my breathe they all turn out like I hope they will. The problem with being an innovative thinker is you go out on a limb a lot and sometimes it breaks. I tested what I'm doing on a smaller scale this past year and this should all pan out...but I'm nervous. I'm relying on other people to pull with me and that is the most difficult thing. People are flakey and managing their perceptions to navigate ego and agendas and maintain buy-in is A LOT.

Like, I don't need to be convinced by and large. If I see the benefit, I'll show up all day long. But most people need to be nurtured through the 'journey' which didn't come naturally to me. The task itself motivates me. Apparently I am super weird that way lol. So I've had to develop a skill set of keeping people engaged and on task and happy, sometimes in groups of a hundred or more. It's a lot. It can be tenuous and turn on a dime.

There's always the fun 'why is my name wrong? that's not my name' conversations. Well, we copied what you gave us.

Or, 'I'm a cat, why am I with the dogs?' Well, you told us you were a dog. 

And, 'I selected cat, but really I'm a unicorn. Put me with the other unicorns.' Well, unicorns aren't one of our options.

Plus, 'What am I?' Same as the last three times we told you, you're a cat. Still.

Lots of deep breaths going on over here. And some chocolate therapy while hoping if I give them grace, they'll give me grace when I invariably do something stupid.

Aside from that, I'm expanding some things, breaking through some technical intel barriers on another. I'm ahead  on several fronts through the collective efforts of this sort of mutual aid society I run in my industry. The big sharks are all paying for access to me and pretending they're not sharks and I'm acting like I don't notice while also paying for access to them to keep an eye on their bullshit which they also pretend not to see. They're worried I'm stealing from them and are surprised to find their IP isn't even a thing for us, we're so beyond them at this point. 

And also some of their IP is garbage and they don't know it (or they know, but don't care because profit--both types are legion). One blind spot I see a lot is people misattribute their success to the wrong thing and will actually design and sell strategies based on things that weren't the magic sauce. And then people can't replicate their results. Oddly, people will assume they're the problem instead of questioning the person selling them a shitty strategy. 

Always question the premise. Always. 

Most of the sharks have had to level up because of me...sometimes they even use my exact phrasing in their trainings. I'd go after it legally, but it would be a mess--they're better funded since their health doesn't fuck them up all the time and limit their options. But at least I'm forcing some good intel into things so people actually benefit.

Can you imagine charging people a mortgage payment for a master class, and then through simple negligence, causing people to lose their access to what your training is for? Like, I'm going to teach you to drive, but I'm not going to tell you about the brake pedal or how bad drinking and driving is, and I'm just going to let you slam back some Tequila and then crash in a ditch. That's the level of bullshit I'm talking about. And people just took it. Paid for it. 

Sometimes people scare me.

Trying to Wrap It Up

Saw the PCP  for the annual tap dance show and they felt we should do something with the kidneys given my history and the fact that I think I've been passing small stones here and there (or peeing out bits of razors somehow). Have an ultrasound coming up for that and then I'm done? I think?

Am I done? I think so?

Well, no. Not so fast.

Got boosted. It hit me like a semi on fire. My hips are all inflamed now. Sleep tanked because the hips hurt. Despite the pain, I crawled into bed and didn't move for a century. I completely stopped eating, which...

Someone mentioned, off hand, that ever since Covid, their appetite is all messed up--they're not eating. I'm pretty sure I have too many confounding factors (including medication) to tease out whether Covid is impacting my appetite or not, but after hearing that, I thought it was interesting that I lost all drive to eat after the booster.

And then I mentioned it to someone and they were like 'yeah, I've had people say they lost their appetite after covid.'  Huh. Weird.

The loss of appetite was then followed by an odd episode of pukey stomach flu-y something. Fun.

Anyway, I'd hoped the booster would boost me out of my post Covid funk. So far, no dice. In fact, I feel worse. Way worse. Bah.

I've lost pretty much all the progress I'd made to date. I'm good for about a half a day and maybe one big activity...going to an appointment or making dinner or working. I push the limits but one big thing is about all I can count on. By 3-4 pm I'm done. It's kind of like having mono again. It also reminds me of the pacing I had to do with adrenal insufficiency. Do one thing and rest and either recover enough to do another thing or be stuck resting.

Post booster life has been such a step backwards, I finally broke and called for an appointment at the long haul clinic. It's been over 9 months. I'm so depleted. I'm not recovering on my own. It's ridiculous. I'm so irritated that despite all the vaccines, and perhaps because of them, I still ended up in this hole.

Why is doing the right thing having such a negative ROI?

I mean, sure, I suppose this is better than ending up in the ICU, perhaps the vaccines spared me that, but I've been up to the line of needing to be intubated. I've been pretty damn sick with a lot of lung damage that took forever to heal. I have a frame of reference here. This recovery isn't any easier than that, based on my experience. It's different, but it's not less work or less disruption or less stressful.

I might be breathing better or have less lung damage than someone who ended up in the ICU, but you can't tell that based on how things are going. I'm still benched either way. I still pant like I had a severe asthma episode.

I'm not living a more functional life post covid just because I was vaccinated and stayed out of the ICU. 

Which goes to my big criticism of the vaccines. They aren't doing enough. I mean, I get we have no other option, but better than nothing isn't a level of efficacy that's going to get us anywhere. I know there's efforts to improve the vaccines, which is great, but it's going to come far too late for too many people.

I need a vaccine that prevents covid or at least prevents long haul and also doesn't destroy my baselines in the process. Where is it?

By the way, people get so mad when I criticize the vaccines. I'm fascinated by the fact that the narrative is required to be black or white. You must be either anti vax or pro vax and each extreme must be rabidly and rigidly defended. I had no idea how polarizing this was, that people had no ability to handle any level of gray when it comes to vaccines.

Well, listen, if there was a vaccine that was even just 70% effective at preventing Covid altogether, or hell just prevent long covid reliably on top of preventing hospitalization and death, we all know we'd abandon the current vaccines without a second thought and never look back.

It's not like what we have doesn't have A LOT of room for improvement.

Wanting something better or being unhappy with the vaccines' performance doesn't make me anti vax or not pro vax. I just want better. We all need better. What we have isn't going to get it done.

Meanwhile, ditch the masks and go lick the toilets at your nearest gas station, just lick all the public surfaces, French kiss everyone you meet, you're already inhaling their germs. The pandemic is over. Huzzah. Now everyone can have long Covid to go along with their three jobs that don't even cover rent!

Fucking hellfuck. This era is such an asshole.

Okay. Anyway. Can't do shit about it so let's circle back to weight for a moment. PCP weighed me and I was convinced the scale would show I'd gained a bunch of weight. The week before (pre booster) I'd had a really crazy appetite that only wanted sugar, sugar, sugar. No matter what I ate, I wanted more sugar. It was really atypical. I had a hard time controlling it...which is beyond abnormal.

 My control has been ironclad for years at this point because the tumors never allow any other option. (And yes, I eat all sorts of stuff but it's spaced out and the portions are small...I'm always tiptoeing around the liver. Yes, I've talked about having ice cream for dinner, but that's all I'll eat. I can't do a huge meal and ice cream frex. I could eat lunch and then do ice cream for dinner or skip food most of the day, eat very very lightly, so I can handle a small meal with ice cream after...that would work, but I can no longer eat like regular people. Haven't been able to for some time.)

(Things I don't mention much...the number of times I still hand half to all my food over to hubby. The meals I try to eat and suddenly find I can't. It's better than it was. I do eat, sometimes decent amounts even, for decent periods of time even, but it's not reliable. I have to be careful. And, as you've witnessed, if other health things go sideways, that just disrupts my intake even more. See also: Why I started Ozempic. Because I should've been losing weight and I wasn't.) 

This feral drive to eat eat eat was something I hadn't seen before. I actually struggled to stop eating. I just wanted to stuff stuff stuff myself with sugar sugar sugar no matter how liver felt about it. I was screwing myself.

Turns out my body wanted to attempt a period and it was all some kind of fucked up hormonal swing. Just what I needed. 

On the day of the appointment, I was super bloated and dreading the scale. I felt overstuffed, like bad taxidermy. My pants were tight. My liver was at a dull roar, irritated by the things I'd made it deal with.

Aaaaand I lost weight. Ha. WTF? I still haven't dropped a size though. I don't know. Maybe it's just muscle mass loss from not being as active since Covid. But I'm officially about 20ish pounds from--a no doubt very jiggly low muscle mass--goal weight now. 

It's just all weird. All weird all the time. I have no explanation. I am pretty certain that I really am violating the law of thermodynamics though. Like, it's not hyperbole.

Moving on...Teen has her knee braces. She seems happy, but I'm not sure how functional they are. I'm a little skeptical on how well it's all going to work. They look uncomfortable and difficult. If it was me...they'd be discarded in a dark corner somewhere. We'll see. If it helps her be more active, I'll be pleased. The jury is still out on whether that's the impact.

She says she's feeling better. Her joint pain is improving (although the hypermobility remains). The fever has gone down and stayed down. The medication seems to be working. Her heart is more stable. She's not back to normal yet, but at least she feels she can say things are improving.

However, we can't seem to escape the doctor appointments! We had another week with 5. I managed to cancel one and wrestle it down to 4. BUT NOW we're starting to put more pieces of the puzzle together and she needs to see another specialty. Oy. (And by the way, this was all the same week I was puking. OMG. It sucked!) Hopefully this next thing will just be a one and done spot check to rule stuff out.

The one really nutty prof now loves her and she magically has all As now and they want her to be in the Honors program. Which cool...but the teen's work quality didn't change, I just coached her through how to manage up. I'd rather there be more impartial grading going on, but I guess this is a good introduction to the real world. 

Sometimes it's not what you do, but how your boss feels about you. (I guess you could say the same about vaccines. Ha.)

Unfortunately, I didn't have anyone to explain this to me and I spent my early career focused on doing things well and being very confused as to why the boss was a huge dick lol. I eventually caught on, but I never liked it. See also why I'm self-employed. It's not just because of the health chaos. The difference is, if I wasn't interrupted by my health so much, I'd have taken everything way farther.

Co-op seems to be going better. She says they think she's funny (which she is, she has great comedic timing) and that the kids are "capable of doing group projects." They did a hacker competition thing and had a blast. 

The bigotry is in and out, but she's unflappable and has been learning to confront it head on. One of the kids came out as trans and her class group was ewww. She just looked at them and said 'how does what they do even affect you?' And they had no answer...

If we can get her health to stop yanking her around, this kid is going to absolutely slay.

Hordes of Rock

By the way, pictured below is the rock that crushed my hand. It's approximately 3' by 4'. It weighs at least 500lbs and likely more.

Hubby is now manhandling the remaining slabs on his own. As mentioned previously, he's incredibly strong and really good with the physics involved in moving heavy things. He's just not so good at working with a partner who can't match his abilities.

The next two slabs he wants to bring home are bigger than our trailer. I keep telling him to forget it then, but he just looks at me and says "Hush" with his pinkie at the corner of his mouth like he's Dr. Evil from Austin Powers. He's determined to own these slabs even though we don't have much idea of what we're going to do with them.

So, yeah. It turns out, we are collecting cabinets and also slabs of sandstone. And while we both like rocks and cabinets...I think we might be crossing a line here. We have over 50 slabs of varying sizes now (most are smaller than this one though). We'll use them around the farm in some capacity or another...just as soon as we figure out what that is. Stones like this are useful when you have property. We've just acquired them without much of a plan other than 'stone good, stone useful.'

I don't know that we need to risk tackling slabs bigger than our trailer, though. Maybe we don't need to drag every slab we meet home?

And yes, my hand is still swollen. Although to be fair, it's only been a few days since my last post.  I wonder if it's permanently bigger now? Like playdough that's been spread thin with a side of puff paint. The palm and back of my hand are just wider and thicker than they used to be.

It's been an odd injury. Very surprising and unexpected all around. I'm glad it wasn't worse, but it's definitely been weird.

PS: Random thing I forgot...teen won a prize for their Halloween costume. They handmade the whole thing (crochet, papier mache) and it turned out great. What was the costume? No one knows. Not even the teen. The inspo was some obscure music video with a lot of surreal characters in it. So I can't even tell you what it was. Interesting. It was interesting. And had a lot of pretty blue colors with sparkles.

This is one thing I love about homeschooling. It allows more time and there's less peer pressure and kids can go deep on things that really interest them. And it's always the most obscure stuff over here. Old E. European films was a big phase here at one point lol. Legal podcasts. Foraging. Bones. All things social hierarchies in public school wouldn't tolerate. 

There's no fitting in or dumbing down, there's only finding your passion. 

One of my big themes with the homeschooling has been find your power, leverage your power. We're not here to fit in, to make popular kids happy, to put up with toxic situations (which was what public school had become by the time we left). We're here to walk our own path and we want to travel it knowing our own power and how to wield it.

Door #2 on Let's Make a Shitty Deal

 All right. Finally saw a pancreas specialist. I'm so glad I did that as I have a much better understanding now as well as continuity of care set up.

First off, the MRI report was a little confusing and unclear which led me a bit in the wrong direction. The specialist went through the MRI images and reviewed them and explained what was actually going on. So things are somewhat better than they appeared in the report.

It's a branch IPMN.  These are most commonly found in men between the ages of 50-60 of which I am neither. 

It's approximately 1.5cm. Which, for reference, the clinic I went to starts getting serious at 2cm. Normally the threshold is 3cm, but they told me they're more aggressive.

The MRI report read like it was a more serious type of cyst that had started to spread as well as grow.

That said, an IPMN is still precancerous just not the most serious degree of precancerous it could be. 

I am still in the ongoing monitoring category, which was one of my questions.

And blood work has been ordered to check for cancer markers.

From there, if it continues to grow or develop what's known as 'worrisome features' but stays too small for immediate surgical referral, we get into an EUS with biopsy and potentially some additional, experimental blood work. That was another of my questions, was I at the stage of needing an MRCP or EUS? Based on the MRI report, I wondered if I needed an EUS, but no, right now, it's MRCP.

Or it's stable and we keep doing MRCPs (I just can't get away from MRIs...we keep adding more. Ugh.).

Or it becomes a clear candidate for surgery. 

My case will next go to their version of a tumor board for review, but the expectation is that the plan won't change. 

Based on location, if it ever needs surgery, it would be a Whipple, which if you don't know, is a major surgery with a major impact on your ongoing quality of life. The idea of this surgery is my boogey man. Death sucks, but it ends. A Whipple keeps you going, but it's a hell of a precarious slog.

However, prognosis is good. 80-90% survival rate. Mostly because of early detection and follow up. Which I knew from my reading, but I will say, I had to dig pretty hard to find that. The most common search results are stats on more advanced pancreatic cancers and the numbers for that are pretty dismal.

That said, IPMNs tend to reoccur. So if I ended up having a Whipple, another IPMN could show up in the remaining pancreas. There's clearly a systemic process involved, but they don't know yet how it works. So...that's not ideal.

Oh, and IPMNs can apparently hork up loogies and give you pancreatitis with their boogers. So I have that going for me...

More seriously, the horking of loogies raises some questions about some of my ongoing symptoms that they've always attributed to the liver. Now the docs have some raised eyebrows. Is it the hepatic adenomas or is it pancreas booger congestion courtesy of the IPMN? Was I actually having pancreatitis independent of the liver in all those ER visits? 

(I don't say much here unless it's really bad, but I have a lot of back stabbing from the GI system anymore. Oddly, sometimes it means I'm hungry. Other times, it means I'd better not eat if I value my life. Such a fun game...)

I told the specialist, I doubted we'd ever know because I'm so quick to stop eating the second I have symptoms, which slams the brakes on the worst of it so far. And the mucous tends to not create a long term obstruction, it tends to process through. So unless it makes me so sick, it overcomes me not eating and forces me into the ER and the ER does the exact right testing (aka an MRI/MRCP/EUS) or admits me so the hospital can do the testing, we'll never know if it's the liver or the IPMN. Fun.

Basically, they'll want multiple MRIs every year until I die or get too old to save. That's a fight club that won't let me go.  I'll continue to see what I can finagle in terms of reducing them as much as I can ( I mean, how much contrast can one body actually take?), but that will probably take a year or so to achieve...if it's even possible which I'm not so sure anymore. Depends on what the next sucker punch is.

I will say...I was never told I had an IPMN. I knew I had a pancreatic cyst, but I was initially told it was a pseudocyst and totally benign and I didn't have enough information to question it. All I knew was it would be monitored incidentally because of the liver so I figured if it made a move, we'd know (which is what happened). Then all of a sudden it showed up in the MRI report with a name and all this growth and it was spreading (which it's actually not). 

Better communication and better radiology analysis would have made this way less stressful. This thing has been there since 2014 and scanned almost ten times by now. It's unfortunate that this is how it played out. I don't feel I was informed at all.

Apparently, this lack of reporting is fairly common. The specialist told me they just had a patient who clearly had an IPMN dating back to 2005 but it had never hit the radiology report for some reason. 

That's...concerning. Yikes. Not good. For anyone.

The other thing I will say, the growth rate is a bit aggressive. They're not concerned as I think the location takes precedence and mine is lower risk (?), but I'm meeting some criteria for rapid growth out there. I'm not feeling antsy about it at the moment, we'll have to see what happens. I'm in that betwixt and between stage yet again...it's not good, but it's not bad enough so now we wait.

Anyway, seeing an expert was really helpful and added a lot of clarity (moral: don't just go by the MRI report), and my plan to compartmentalize and carry on stands. Phew. Once I get used to the idea that I'm now being monitored for pancreatic cancer, I get to party for a bit.

Also, I cancelled the third opinion. I'm torn on whether that's smart or not, but I seem to be falling within the guidelines more than not right now and there's not as much oddball nuance to things as the MRI report had implied. I'm thinking I'll just wait on the MRCP next year and go from there???

Oh, and...my oxygen bounced from 93 to 98 on their pulse ox and back again. Never had that outside of asthma attacks and it's only been since Covid. I didn't sleep well all week for one reason or another, so that's at least half of why I feel like ass right now, but the rest of it is this post covid fatigue whatsit that makes my oxygen bounce like a psychotic bouncy ball. I really wish it would go away.

In trying to get my normal activities up and running news...

-Hand is still swollen. It's improving, but yeah, it's been swollen for a long time. I'm using it pretty normally and it mostly doesn't hurt, but I am avoiding things like push up type pressure still.

-Kicking my own ass session #1 (KMOAS): Deep cleaned the house. Long overdue but OMG I thought I was gonna die. Stamina is still not where I need it to be.

-KMOAS #2: I loaded, unloaded, stacked, and threw firewood (not too heavy, not too big) logs with hubby. With inflation looming, we fixed the chimney and put in a new wood burner in the fireplace last spring in the hopes of saving some on the gas bill  this winter (and it's odorless inside so it doesn't aggravate my lungs). We also scored some raised beds for $10 so we carried those and placed them in the garden...they have the hoops already set up for bug netting which is awesome. Good functional workout, but I was done for the day after that. Again, stamina is an ongoing issue.

For contrast, hubby does all that plus mows two acres and paints the dresser that will be the bathroom vanity and runs to pick up some pallets that he loads and unloads by himself and then helps the neighbor move furniture and and and. Sigh.

-KMOAS #3 I've planted more irises and now tulips too. And yes, it IS getting late in the season to do this. Yup. Definitely not ideal. Oh well. I have about 1/4 acre strip that I want to look something like this someday:

I have about 20% of the skill set needed to actually do this, but I figure if I keep slamming flowers into the ground, something good will happen.

And yes, I've planted a concerning 'are you okay?' amount of irises. Over 70. I should've gone for 100...I feel like I half assed it now lol. But remember! I've got a massive area to fill. I'm hoping they'll spread from here.

And also yes, it cost a small fortune. Sort of. At least 50 came from a Chinese vendor masquerading as a "family owned US nursery." I'm not usually one to get suckered by those sham sites, but this one got me. I should've known something was up when I saw the crazy good price. When the receipt hit my email and was all Chinese, my stomach sank. 

I figured I'd never receive a thing or they'd send me plastic irises or something. But no, they did send actual irises. So not as expensive as you might think, but definitely strange and not recommended.

-I carried multiple ten gallon buckets of wet af mulch into the garden to fill my garlic pots. I can't believe it, but I'm still waiting on my garlic order. Ugh. Also that pissed off my snowflake spine so...Advil is my BFF.

-I'm eating relatively normally and consistently at the moment. It's very nice. I highly recommend it. Five stars. 

The Universe and Her ODD

So basically what happens is sometimes I bitch and moan on here and then the universe hauls ass to prove me wrong.

Since my last post about the six phone calls and inability to make any appointments, I've got a specialist consult for the pancreas set up and I finally got a hold of the hep's secretary and know what voodoo woodoo I need to do to make an appointment...three months from now.

Since the universe seems to be on a roll...

I never win the lottery. Ever. Never ever. A billion dollar lottery ticket would never happen to me. And my tumors would never spontaneously disappear. And everyone knows if you grow a lot of tumors, one of them is always cancer 100%. 

Let's see what she does with that.

Also, with regards to the pancreas specialist, since it seems I'm saying one thing (wanting a break) and doing another (making more appointments)...

1. Things are fluid. These posts are a small snapshot of a small increment of time and tend to be my reaction in that moment. There are moving parts that continue on and things and information change. I hope no one would begrudge me that?

It does create some inconsistentcies in the narrative though. I try to add clarity as much as I can as to why things change, but sometimes I don't see the forest for the trees.

2. The sooner, the better with pancreas stuff. I knew this, but I was trying to go for the break anyway. I wasn't ready to accept a change in agenda. However, the economics are undeniable. Early detection can have a very good prognosis. No one should waste an early warning, especially when it's something as serious as pancreatic cancer. 

I'm trying not to be dumb for the most part, but keep in mind, I'm just a flailing ball of stardust, so it's probably going to be a bumpy ride.

3. This was all sparked because I was uncertain if I would have any continuing care from the hep. It seemed prudent to cover my ass (or pancreas as it were) and not let myself become lost in the medical system yet again.

Unfortunately, this means I have to set up the third opinion as well. Upside: this way I'll see all my options and I can decide from there where I'm going to go with this. Downside: even more doctor appointments.

The rich irony is the one pancreas doc hitting my radar is someone I saw back when the liver tumors got real (if you'll recall they kept trying to blame my pancreas which is why I started there). Their pancreas research looks promising and may be useful for my case BUT when I met them five years ago they were a giant asshat who wanted to blow me off as having IBS. 

Like, they literally breezed into the room, sat down and the first words out of their mouth were 'you have IBS.' They had already dismissed me before they'd even seen me.

The only reason I got the MRI that finally revealed the full scope and severity of the liver tumors is because I responded with, "Cool. Is IBS why I can't eat, why I'm spiking a fever, and why I have new lesions on my liver that weren't there before?"

It's scary to think what would have happened if I hadn't asked that question. That it's down to the patient to manage up so the doctor does smart things. 

(Spoiler: I don't have IBS. I have never in my life sought out a doctor to complain about pooping beyond bile salt dumping after my gallbladder surgery. That hospital system has a weird IBS fetish that has managed to infect the entire department when it comes to women. My male relatives with their rare GI shit are treated completely differently, as in they managed to successfully get all their care at that system without ever hearing the letters I B S, a feat I have yet to achieve. I always have to bounce to another system. It's their damage, not mine.)

When the pancreas doc called me with the results of the MRI their voice was shaking and there was a screaming subtext of 'ohshitohshitohshitohshit' as they relayed the results to me. They knew they'd fucked up. Hopefully that was a wake-up call for them.

Anyway. So now I'm like...which doctor is real? Which one am I going to get? The one doing serious research or the one who has pretty shitty clinical skills and even shittier interpersonal skills???

And do I want to see them? Can they do a good job? Do I even get to be picky about this?

The other factor at play...there is no specialist clinic in my state for my diagnosis. I'm a little surprised as there are three major medical meccas in my state. It does get treated here, but the specialists who really wheel and deal on this aren't accessible unless I travel.

So I might end up having to navigate traveling for care. For the moment, I'll start at home. A whipple is a whipple and the hospitals here do a lot of those. The surgical treatment is standard, it's the decision tree as to when to do what that's nuanced.

On the teen front...co-op has settled down. The bigotry has receded. I don't know if it was some kind of  social display as the kids established the social hierarchy or what, but it's been quiet. And the teen is currently having a good time and doing things she wouldn't do in the absence of a peer group. This is what I was going for. Crossing fingers this keeps up.

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.