The Actual Doing Is A Separate Hobby

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

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

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

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

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

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

Where are the cynical swamp hags of chronic illness? 

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

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

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

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

The Pinata Version of Butthurt Doctors

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

Bippety Boppity Boo

(The blurriness seems to be a Blogger issue.)

 

MRI Results and Other Data

 

Hip labrum tear.

Well, at least it's not a tumor.

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

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

Bah.

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

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

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

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

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

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

So that's the hip story.

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

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

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

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

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

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

Spike

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

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

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

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

I emailed Infectious Disease. Maybe they know.

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And that's it. I'm out of steam. 

God damn fever. Fuck.

Rare Disease by the Textbook

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

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

So here are my takeaways thus far...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two Different Hobbies