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!