Whacky Ass Wonderland

Hand is doing okay. I have about 85% of my motion back, maybe 40% strength, and 60% use. I can't handle anything heavy or that requires me to exert pressure. And no long typing sessions.

But I can limp along.

The steroids stopped the burning. I also had a big bowl of watermelon. I was told, with regards to the hyperaldosteronism, that the cortisol surge from the stress of the injury could mess up my potassium.

An hour after the 'roids and watermelon--consumed while refusing to make eye contact with the dogs who slowly died inside with every bite I didn't share--I was well enough to go back to bed and sleep.

My body is a wonderland, y'all. I just never know what whacky ass shit is going to happen next.

Meanwhile, I'm working ahead on colonoscopy prep. I have unpleasant memories of my first one and the Ozempic really slows down your system so I'm trying to be extra proactive.

And speaking of electrolytes, the butt people are paying exactly zero attention to that despite my best efforts. I mostly am fine---if I wasn't I'd be here bitching about it--but I do have to pay attention to salt and potassium in a way other people don't. I know potassium counts of different foods and drinks by heart lol. I spend hot days actively managing it or else I feel like death. It's a thing.

The Gavilyte bottle warns about electrolyte badness, but it's just blank looks all around when I say it. I guess you have to have a poor outcome for it to register or something. 

My self defense amounts to fruit juice that has potassium and fervent hoping with a side of irrational optimism. I'll do my best to muddle through. I think I can skate by between what I know and my age not being like, super extra haggy and fragile yet.  

I just remember being super sick my  and in a lot of pain my last go round with Gavilyte. Miserable experience. Not looking forward to it x decades later with so many other things sapping my system.

It's Just...a Little Crush

Who had crush injury on their bingo card?

Not me!

And yet...

Yeah. 500+ pounds of sandstone on my hand.

Because reasons.

Actually because hubby.

Fact: Women only live longer than men if they aren't doing the stupid things the men come up with.

Amazingly, it's not too bad of an injury (so far at least). I was fortunate in that I was pinned on grass and not concrete and we got it off me very quickly.

This was definitely a wake-up call on safety for him and me both.

We do a lot of DIY. Hubby is incredibly strong and understands the physics of moving insanely heavy things. I am like a three-year-old. I'm helpful, but largely don't understand physics. I don't have the strength to develop any real expertise with that kind of work flow. Which makes me dangerous. If I had a clue, maybe I could've kept an eye on hubby and called him out before he dropped the lever without checking on my position.

So anyway. My hand is lightly crushed.

Crush injuries are kind of wild. You basically pop all your cells, and with major crush injuries, that can lead to serious kidney and electrolyte issues. Because your cell guts just splatter everywhere and the molecules are too large for the kidneys to process and you can actually die.

I seem to have avoided that party, but my adrenal glands are on fire enough to wake me from a dead sleep (for those who don't remember, this has happened before with adrenal insufficiency, my adrenal glands do, in fact, get super inflamed when they aren't 100% and also urine is clear so it's not any obvious kidney distress). I am guessing recent steroids for asthma plus high doses for contrast allergy have left me a bit depleted.

I don't think I was in shock. Maybe just a little? But my system seems to be a bit verklempt at the moment.

So I took 10 mg of prednisone. Hopefully that'll be enough and things will settle down.

And no. I did not go to the ER. If things get weirder than they already are, I'll consider it. But mostly I think it's just going to take time for it to heal. I don't think there's anything else to do.

And yep. This is my life. Sometimes I wonder if the universe regrets letting me live and is just  constantly trying to rectify its error...

The dozens tumors on your liver didn't get you? Not even when we made two hemorrhage and gave you a shitty surgeon? Fuck. You eat healthy? And exercise? You bitch!  Well, how about a cyst on your spine so you fall to your doom? No? Okay, we'll grow some cancer shit on your pancreas and slam a massive boulder on your hand? Did you die yet? How about now? God damn it. Die already! Now? 

I don't know. Maybe I'm actually a cockroach?

A Slow Simmering Stew

All right. Got in touch with the hep.

MRCP in 6 (really 8 months because of my schedule--we have an out-of-state family wedding I want to enjoy. No way I want to know I'm super fucked right before that. We'll wait until after.).

I'm looped in with patients and am getting the scoop on that end.

The plan is to compartmentalize until the MRCP and focus on what's in front of me, including some family trips and enjoying what we can given this may very well be the final respite before the shit hits the fan. Do the MRCP and then schedule second/third opinions around the MRCP date.

If this was just the pancreas, I'd be moving faster on a second opinion just based on the MRI, but I can't quite figure out how to balance the logistics of all my tumors and specialists. I can't just run off and do whatever wherever because then I could mess up care for the liver. 

The hep is hip and all and would probably work with me, but it's getting to be a bit of a tangled web. There is something to be said for keeping the process flow united and not dividing it into a hundred different side quests. Or maybe that's just a thing when you have lots of tumors that require babysittig.

Things are just complicated anymore. Which in and of itself increases risk for all sorts of poor outcomes. Bah.

And I need to get through the colonoscopy too. Which is soon. I feel like I've been talking about it forever. But it's coming. I swear.

So that's where we are now. Doing the testing where it's offered and worrying about talking to top level specialists later.

Sleep apnea...will be shelved. Don't care. It's not my biggest problem. I feel better not treating it than I did treating it. I'm not even looking at surgery for it. Pulmo will have to roll with it. 

I'm going to be focusing on losing more weight and getting back into shape in case I have to have surgery for the pancreas next year. That will have to be enough for the pulmo and hopefully it'll improve the apnea. I'm not going to risk another asthma flare like I had any time soon. It's not worth it.

If the MRCP comes back fine (which I am not optimistic based on the MRI report--at the very best it disappears, at better-than-nothing it'll need more watch-and-wait imaging, at worse we get into resection territory-- although please do let me be all kinds of wrong) we'll revisit.

It looks like the liver tumors may very well save my life...in like, the suckiest most painful way possible but still. How weird.

So simmering everything on the back burner for the next 8ish months. Focusing aggressively on a healthy diet and exercise and family fun because life is short and tomorrow is not promised. And crossing fingers this turns out.

I'm doing my best to keep the teen oblivious. She knows I need more imaging, but has no concept of stakes, and at this point, me doing medical stuff is just what mom does. It doesn't register. Not telling family or friends...it's too soon and I'm tired of being a fucking mess all the time.

Hyperventilating Is the Same as Deep Breaths...Right?

 Well. I think I've watched every single YouTube grand rounds video on the pancreas now. And I've read/skimmed the last 10+ years of studies. 

And probably I am fucked given the rate of growth and location. Because of the liver tumors, we've got data on this going back four years. It's not the first time we're seeing it. It's the first time there's change.

I still have to talk to the hep, who's out of town (naturally) until when I don't know. Until we connect, I'm trying to take everything with a grain of salt and tell myself I couldn't possibly understand all this medicalese, but here's the menu I see...

1. It disappears. Mostly this doesn't happen but a few people have, anecdotally, had theirs magically go poof so hey, maybe. Why the hell not?

 2. Monitoring. MRCPs etc...

3. Partial resection.

4. Removal of pancreas.

#1 is unreliable magic so it's just a question of door  #2, #3, or door #4 on this edition of Let's Make a Shitty Deal.

I'm also hoping there's a less invasive ablation type procedure that's available and just hasn't made it to YouTube grand round videos yet. It sounds like some less invasive stuff is in development out there.

The upcoming colonoscopy is also relevant. In some cases, what's going on is actually associated with another cancer such as colon cancer. So doing butt stuff is going to add data points that we'll want.

And fun fact, there are studies for this I could join in my area...but I'm too young. 

You guuuuys. I'm not swamp hag-y enough!

HahahahahahahahahahaaaaaaaaaaaaAHHHHHHHHH.

First Blush of Welp

Got the MRI report. Liver seems stable as far as I can tell. I haven't heard form the hep yet, but that part of the report reads good.

Buuuuut now the pancreas is apparently getting precancer-y and in need of follow-up per the MRI report.

In theory, size-wise it doesn't look like it would need surgery yet BUT it has grown and location wise, yes, I may need a fucking pancreatic resection. May. That's just first blush pass of my reading upon this. We'll see.

So. Yeesh.

Hopefully the hep has a pancreas specialist referral for me so I don't have to chase that down myself.

I so wanted a break. Not going to get one though.

If I was 80, this would be easy. I'd just go straight to palliative or hospice or whatever care involves doing nothing but having a good time. But I'm too young for that still. I have to run the medical torture gauntlet. I have to at least try. For a while anyway. 

Fuck.

I'll get with the hep and figure out if what I think I'm understanding is way off base or not and what the next step is.

Fuck.

Also...on track to kind of completely line up with one tumorgenic genetic thing and yet I'm negative on testing. How???

Always the anomaly, never diagnosed. 

I am really wondering if the genetic testing should be repeated in case of lab errors. This seems like a one in a trillion coincidence... So many things lining up and then never bearing out on testing. One...really weird, but maybe. But I'm up to two like this at this point. That doesn't seem right.

If we're beating odds, could I please just win the lottery?

Over It

Just stupid sick over here from the MRI. It hasn't hit me like this before. Maybe I picked up a bug? Maybe it's not the contrast? I've been completely down and out the last few days as whatever this is has its wicked way with me.

I seem so fragile anymore. Is this from covid? Is it aging? I just am stuck on the struggle bus this year no matter how hard I try to get off.

It's been a lot like an especially unpleasant colonoscopy prep over here. Butt preps for daaaaays. 

Which may end up kind of working out for me...

So...wait. Is this...winning? 

Eh. Fuck it. That's it. I'm having ice cream for dinner. Judge all you want, but this is some bullshit, not to mention I'm low on calories.

I really really really hope I can 'graduate' from doing these every year for the liver. I'm not sure what will pan out for CHEK2 and the boobs, but I'm already sick way too much so I am crossing fingers we can do one and wait a while before doing another one. I really really really don't want to add any more down days to my life if I can help it.

In ancient times, I read science fiction novels that had painless, zero drama body scanners. Where is that tech? My body already beats me up, no need to make me punch myself with medical procedures too...

Buried Under Mt. Roid

Last time I took 150 mgs of prednisone like this, I obliterated all inflammation in the known universe. It was kind of great. Especially as I still had that cyst compressing my spinal cord. I got a lot of relief for like a week.

This time...I feel absolutely awful and high as fuck. (I don't know that I'm high high, but I don't know how else to describe it.)

And the contrast seems to have irritated the liver. I'm having a lot of trouble eating today.

So I'm nauseated, exhausted, my brain is broken, I have a headache, diarrhea, and my liver hurts.

Going straight into colonoscopy prep is going to be amazing, I'm sure. Not.

OMG I think it wasn't so smart doing these back to back. What was I thinking???

And the teen's homeschool co-op is full of nasty homophobes. I'm so disappointed. We are a love is love is love family. We have gay relatives and friends we love and the teen is not cool with hearing all the so called jokes and seeing so many kids thinking it's hilarious to be someone who defines themselves by what they hate.

I need to write a polite FYI and WTF to the director. But my brain is currently broken so I can't. And the teen is peeved that we have to stick our necks out on this as well. She'd much rather fly under the radar, but like, these kids are awful. And it's not fair to her that she has to spend her time there being subjected to this.

I wonder if we will actually be at this co-op for long. Sigh. I had such high hopes. Co-ops are always such minefields. Either too conservative, or poorly run or very cliquey or the parents are lazy and don't contribute like they're supposed to or or OR. 

This is one thing that's no better than public schools. Parents are parents everywhere and their kids spew whatever dumb BS the parents believe or what parents allow them to see online.

Anyway, garden update.

Hubby went to war with the yellowjackets and set their nest on fire (as well as causing fire to shoot out the mortar in the retaining wall much to the amusement of the firefighter next door) and sprayed glue down the hole so they abandoned the nest and have discovered the garden instead. Meaning, my autumn strawberry crop is toast, and if I try to pick anything, I get stung. 

Fun.

(See also: Why women live longer then men exhibit #1343340693807950948539487938485.)

A moment of silence, please for the strawberry crop. We have 4-5 different varieties, several of which are everbearing. We could be rolling in fat, juicy strawberries right now, but instead the yellow jackets are tunneling in and gorging on them. It's an absolute massacre. Sob.

Man, it's always something with gardening. Always something. Never set your heart on anything when it comes to gardening. Nature is a fickle bitch. Make like Buddha and nix the attachment.

Next year between the birds and the bugs, the strawberry beds will have to spend the entire season under netting. Boo.

I've got all the rhubarb in the ground finally. They aren't happy about being removed from their pots and were pretty stressed from the Japanese beetles so they may not make it. I doused them with some fish fertilizer and am hoping they perk up before winter. I've got one that got put in the ground from the start and it's happy as a clam so I've got that going for me. 

(Also, it turns out the Japanese beetles have a sweet spot on plant height. They like taller plants. Who knew? So all the rhubarb in pots got hit hard. The one on the ground...nothing.)

Do I like rhubarb? Actually, no. Not really. I don't hate it, but I also don't love it. But it's a perennial and the internet SWORE up and down that it had no pests which was a DIRTY LIE. The Japanese beetles absolutely feasted on it. We'll see. Half the family likes the stuff. If we can wrest the strawberries away from the yellow jackets, I can make some strawberry rhubarb goodness.

I've sowed the cold hardy lettuce in the spot we made for our cold frame. It's been so cool up here that I'm planting it early. I'm hoping to get cold frame gardening working for us, but I don't actually know what I'm doing. The big goal is to grow all our own lettuce and maybe some kale (if I can find the seeds, which who knows--one of the odder dynamics in our family system is all the other adults put my stuff wherever and don't tell me and then I never see it again*) all winter long. 

I'm doing garlic in pots...excited about that. Pretty much have those prepped and waiting. I. Can. NOT. Wait. For. Scapes. OMG. Delicious.

Waiting on the rest of my iris order. Hubby tilled a small landscaping hill that will get creeping thyme and phlox next spring and has the potential to look absolutely spectacular. 

And we're planning out a large potato and onion bed. The goal is to get the whole thing prepped with a combination till (because omg the weeds here are more hegemonic than Putin) and no till method before winter so that all we have to do in the spring is drop shit into the ground and profit. 

Plus we're working out how and where to grow pole beans. I want to see if I can get more production than I've had in the past. Hoping to get a trellis system up this fall so it's ready for spring. Since I'm halfway healthy right now, I'd like to work ahead as much as possible as who knows what'll be imploding by next spring? I have yet to have a healthy spring the last three years...

And did you know? Fruit trees get sunburn...in the winter? Yeah. It's a thing. I couldn't sleep after my second dose of prednisone for the MRI so I stayed up all night learning about it. Trees need sunblock apparently.  And they get cold. You're supposed to wrap the trunks in straw and burlap. I'm not sure if you need to do that every year or just when they're young, but basically I have to make some kind of winter sweater for my baby fruit trees.

At least I don't have to actually knit anything. I am far too dyslexic for that.

Oh, and I'm planning herbs. What herbs do I want to grow? My beautiful sage was the victim of involuntary manslaughter.  It was poisoned by salt when hubby left a bucket I thought was water in the garden, but was actually some kind of grass killing experiment (which there's no grass in the garden so like, why?). So replace the sage, more dill (love dill!), lemon verbana, valerian, and I can't remember what else. I am keeping a running list along with calendar reminders for when to order seeds...just can't remember it all off the top of my head.

Oops. Almost forgot calendula. Which is a rockstar in the garden. That thing self sows, blooms forever, and is hardy as fuck. I'm going to save the seeds and use them as easy landscaping flowers. Supposedly you can make a salve with it but I haven't gotten that far.

I will say, I am shit at harvesting herbs, but they smell amazing and pollinators love them so whatever. I can harvest any time. Figuring out how to grow things is what's tricky and where I need to gain experience.

On the organization side, I continue to find it difficult to plan out yields for stuff. Like, the internet will say, you need 10 plants per person, but that often doesn't connect with what I see happening in real time. So we're just kind of flinging stuff into the ground and we'll figure out the yield when it's in our hot little hands and iterate from there.

Random but real in the feels, I'm out of home grown onions and I'm so sad about it. Fresh onions are amazing. They are so sweet and they caramelize so beautifully when cooking. Sigh. I'm going to plant as many as I can next year. 

*I've been making people buy replacements of things I can't find because I'm a bitch like that and also GET A CLUE, PEOPLE, and I've finally gotten some designated storage space that's supposed to be off limits (which still gets fucked with but not as bad). The hard part about living in a total gut job is that you can't set anything up and establish good systems. The storage is transient or not there and space usage needs change depending on where we are in the remodel. 

At times, it's like having an entire household live out of one suitcase. So my things end up somewhere that conflicts with what someone else needs and vice versa. It's just a mess. All the time. Do not recommend.

BUT let the record show, I don't disappear other people's stuff. Maybe someday that will catch on...

Nothing Update from the so Not a Food Psychic

Holding steady here.

Off the pulmicort.

Not feeling as energetic as I was. So I guess I was just high on 'roids or something.

But I do feel incrementally better overall. I didn't lose all the improvement, just didn't keep 100% of the gains.

Next up...liver MRI and colonoscopy. Hopefully those come in clear. My master plan is to stop doing these MRIs all the damn time. I'm really hoping that ultrasound report saying there was a new liver tumor was all woo.

But this is me we're talking about. So I'm taking deep breaths and preparing myself for more fuckery. 

Food wise...

Tried my hand at Ethiopian Beef Tibs and meh. Hubby loved it. Absolutely loved it. The rest of us were like...hmmm, weeeell, this plain white rice is nice lol. I'm going to have to get my hands on the real thing so I can reverse engineer it. I don't think the recipes online are on the up and up.

The best meal this month was Costco marinated pork tenderloin with Costco herbed grilling cheese (salad on the side). If they would please just make 7 more plug-and-play done-for-you meals like that, my life would be amazing. The amount of decision fatigue and meal prep that would eliminate would truly be life changing...but noooo. Can't have that entirely reasonable, no doubt hella profitable for them food thing.

Instead, I'm left to intuit how to make a good Beef Tibs when I'm no food psychic. Come on, Costco. Make like Blue Apron, but easier.

See also...I'm in the middle of the steroid munchies. Which sucks because I'm about to slam back 150mgs of prednisone in 12 hours and make it so much worse. At least I segue from that directly into starving for my colonoscopy.

(Okay and yes, Costco does have a lot of prepared stuff but it's not all good, not all gluten free, not all low carb, and not everyone likes it so...make it better Costco.)

Teen wise...

Also holding steady. We've been fortunate to have a staggered start to all the things this year. College didn't start until late which gave her time to get acclimated to everything else first.

She's running tired though. I think deep down, Covid isn't quite done with us still. I'm helping her pace, hoping I can optimize things for her and prevent overwhelm, and I'm just holding my breath that she starts to turn the corner here on the energy soon, that we didn't bite off more than she can chew.

Even without Covid, this is an ambitious year given how much the pandemic kept us at home the last two years. It's a shock to the system after endless pajama days. 

I love pajama days by the way. This hectic, perpetual shitstorm of chaos hamster wheel we've decided is living life is bullshit.

Single Mutation Across Generations

 

The theoretical cause of my liver tumors could be the following...

Single mutation of APOA5 gene which is associated with metabolic syndrome and high triglycerides (which I have had several times in the past).

And recent analysis showing that, beyond birth control pills, a risk factor for hepatic adenomatosis is metabolic syndrome and prednisone.

Which with PCOS and hyperaldosteronism and fifteen years of high dose steroids for asthma and now this mutation, I definitely meet that criteria.

But this is theoretical. There will be no studies. The biochemistry lines up, but we'll likely never have hard proof.

I suspect (and for some things we know) the teen has the same hormonal and genetic soup. As a result, she will have to keep an eye out for any liver tumor symptoms. I will say that medications like Ozempic may very well end up being preventative, but of course we are the experiment with that. There won't be any large scale studies. We'll just have to see for ourselves. 

So yes, unfortunately, my kid will need to watch out for liver adenomas and hyperaldosteronism. We got that much out of the genetics testing. (I am hoping the prednisone was my tipping point and that since she doesn't have to take it, that she'll avoid all the tumor stuff.)

If she decides to have kids, she will need testing prior to conception because mutations of APOA5 inherited from the father and mother can result in a child with serious disease.

So I guess I did find some answers. I didn't think they would be this obscure or so outside the lines. But isn't that always how it goes for me? Why am I surprised? When am I going to NOT be surprised? I should work on that...

Navigating & Designing Life When Science Comes Up Empty

One thing I never wanted to teach my child was coping with chronic illness and yet here we are.

And we are at the point where medicine has little to nothing to offer her. We've tried a lot of things. Seen a lot of doctors. Her system is unimpressed and science has no idea.

After years of PT, we've been unable to eliminate the risk of falls. We've not seen sustainable improvements.

Medicine is expensive and time consuming and it's not providing much benefit. The ROI isn't there.

So I've proposed to the teen that it's time to quit. To focus on figuring out what her systems and processes will be for self care and recognize that this is likely her baseline.

It doesn't feel good to say that or have that discussion. On the surface it feels bleak, but in reality, what I'm trying to do is direct her energy into things with better ROI on her time and effort. Her education. Life experiences. Rebuilding her social network. There are things she can do that she'll get way more out of than going to yet another doctor.

Her body is going to do what it's going to do. We can't control that. So let's focus on where we have some control over outcome.

Understandably, she's upset. This isn't fair and it's hard and no fun. She doesn't want to be different. She just wants to be normal.

I've been there as a teen myself with uncontrolled asthma. But having to pay attention to your health from a young age isn't all bad. There is a benefit. I see folks hitting their 50s and for the first time having health issues and they're a mess. They don't have the know-how or discipline to really care for themselves and they can't tell when their doctors or care aren't great and they don't have good outcomes as a result. 

No child should be sick, but it does create some degree of health skills that have a pay off down the road. (Maybe I'm trying too hard to see a positive, but I really do notice a difference. Folks who've never been sick until later in life struggle so much more than those who've never had it easy. We're so used to being vigilant, to having to take extra care...we can follow directions, be proactive, we will take the pills, do the PT, get the second opinion etc...to ensure good outcomes.)

I've also been talking to her about how to plan a life with chronic illness (which I guess, thank goodness I have some direct experience with that). About looking at careers with good part-time paydays and lots of flexibility. About little to no debt for college. About how the free community college for high school will serve her well. She's welcome to live with us as long as she needs to and we're happy to cover most of her living expenses as long as we can to allow her to save up some financial cushion.  

Meanwhile, science will continue to chug along and maybe someday there will be an effective treatment or answer. But until then, life goes on and we have to live it as best we can.

It's Genetic But We Can't Find the Genes

 

With regards to the familial hyperaldosteronism, you may recall I had some confusion on what I was told about it. Here's why...it is familial, it is inherited BUT none of the known genes popped on the various genetics tests they ran across my family.

It is beyond odd. The geneticist is very puzzled.

Here's my conundrum...

The pattern of hyperaldosteronism that runs in my family is one that appears to involve brain aneurysms.

There is a known mutation for this, but none of us came up positive for it.

Meaning, I won't have access to preventative care.

Maybe the aneurysm isn't related. That's the hope I have to hang my hat on.

The geneticist says that as the science evolves they may find the genes causing so many of us to have hyperaldosteronism. 

So yes, it is genetic. But we don't know the genes. 

I'm not the only patient like this out there, either. It does happen with hyperaldosteronism apparently. 

This is a great example of how far genetics has to go. They can see it's inherited. They can test across the family. And yet still come up empty. That's a pretty big blind spot in the science.

My main thing is accessing appropriate care. That's all. But I can't without any clarity on the genes. So I'm screwed. And so is my kid if they inherit this from me.

In more positive news...I'm feeling a lot better overall. I think some of the covid stuff has improved. I have much more normal energy levels. I'm sleeping pretty well. Breathing is good. Last night was a bit meh. I still have spine issues and despite the weight loss, they come and go and tend to be worse when I lay down. Pain and numbness and tingling flared last night. PT exercises help, but I suspect at some point, I will need a fusion. 

(Degenerative spine stuff is also something that runs in my family. I had hoped to not have it, but I'm also--oddly--one of the tallest people in my family--even among the men--with some congenital spine abnormalities so I was probably doomed from the start lol sob. )

Always Minor, Never Major

 Some genetic conditions can be diagnosed with clinical criteria. Sometimes there may be major and minor criteria in order for a diagnosis to be made.

So you have to have 2 major and 1 minor, or 4 minor, or 3 major and 2 minor criteria to be diagnosed. (I'm making the criteria up as an example.)

I have all minor criteria...that would need a biopsy to confirm but the specialist wants to avoid it as it presents some downside for me. And family history.

The major criteria are pretty major. They are all potentially life threatening. I'm lucky I haven't had them yet.

But that luck is costing me access to testing.

If I met major criteria, we would proceed with further testing or simply make the diagnosis.

Meaning, in order to not be 4% on the fucking genetics calculator, I have to risk my life. I have to have a poor outcome in order to access science.

That's the economics at play here. We're right back to requiring everything to be acute and serious in order for anyone to allocate resources to be diagnosed.

You have to almost die to get somewhere in the medical system.

There's no economic pressure to capture atypical cases to ensure they don't have poor (and expensive) outcomes.

Meanwhile, genetics is increasingly recognizing that they've only been catching the extremes and that many genetic disorders can have a more mild presentation. (This is based on a quote from a geneticist in an article I read that unfortunately I didn't save. If I find it, I'll link it.)

But we're years from that influencing calculators.

I might not have whatever, but the thing is we don't know and if we're wrong, I (and my family) will pay a heavy price. But since it's not about me and I have little agency, we're going to go with calculated odds and pretend they guarantee outcome. 

What horse race have you seen tell gamblers the odds are a promise of performance? What financial advisor has promised you that today's rates of return are forever? 

This is the crack I'm falling through. We could know, but they'd rather gamble on my odds without my consent. 

Asthma update: In control. All good. Will probably stop talking about this episode now. Keeping up with the Pulmicort for a bit longer. Did my gardening. Got the irises in and harvested 15 pounds of potatoes. 

The Limits of Genetics and All My Fee Fees

 As I have mentioned several times, genetic science is nowhere near as far along as I expected. 

And there's still gatekeeping that prevents free access, which I hadn't realized. I thought that genetics testing was genetics testing. But no. You still have to qualify for things and you can still end up in a situation where the physician doesn't see it, at which point you're SOL.

I don't know how geneticists have much ability at all to recognize thousands of rare diseases they haven't seen, but the system says they do. So here we are.

(And that's not a dig on my geneticist. I like them. They're nice and sincere and I appreciate them. My criticism here is structural, not specific to a particular physician.)

My health history has been input into a 'calculator,' and because the calculator says my odds are 4% of xyz genetic fuckery, I won't be tested. Even though I have specialists who think I may have the thing.

I can only be tested for things with high odds. (I am unsure of the actual threshold, but it's definitely not 4%.)

Like, I get the economic and time constraints that limit medicine. We have chosen to NOT develop an infrastructure that can truly take care of everyone. We have limited capacity. 

Yet every person needs and deserves 100% access. The economics on an individual level are in conflict with the economics at a societal level.

The distribution of science access along a bell curve isn't really efficient or effective for individuals. Our choices here have a death rate. Someone has to lose. Somewhere we cause harm to someone.

And our choices concentrate that harm on the outliers.

Our system is not benign.

Someone out there is positive with  4% on the calculator.

What we're really saying is it's okay to let people fall through the cracks so long as it's a small number. If you're an economist, or a hospital or insurance CEO, this is fine. You'll make bonus.

And you'll never have to think or see or know about the people you've condemned to a poor outcome.  

The system has chosen to set it up this way. Society chose it. We've decided it's fine if not everyone does well. The people who witness the negligence, who see the human cost, have little to no power. That's by design. Change would be expensive. Unprofitable.

So, calculators for everyone. You're a number. And you're a number. I'm a number. We're all just numbers. Binary bits of data missing a heart. So long as the numbers come in small, it's an acceptable amount. It doesn't matter how big the lost lives are--that's not part of the equation.

But I have been the outlier so often that I'm not willing to assume faceless aggregated data crammed into a 'calculator' because of resource limits and profit incentives* has any accurate idea about me. I'm more than an arbitrary algorithm.

Yet once again, I am stymied by gatekeeping in medicine in the service of profits over patients.

I think the next step for me is to pay out of pocket for private whole genome sequencing. It may show nothing, maybe I am in the 96th percentile of normal after all, but I want to know.

As for the rest of the results, I am waiting on reports and papers and then I'll write up a whole deal for those who will come after me. At some point I suspect people will be looking for information on some of my BS.

 

So far nothing will change my care however. It's just a lot of novel data points. For now at least. In 5, 10, 15, 20, 50 years they may have more to say about it.

I do think it suggests there's a theoretical risk my kid could have similar tumor issues. So I got at least some clarity on that. But it's not specifically tumorgenic as the knowledge stands now, so hopefully while her overall risk may be higher, it's not a certainty.

Or maybe they'll learn that CHEK2 in combination with my other mutations ARE tumorgenic. But we are likely decades away from knowing that.

Asthma shmassma update: 

Dinner last night turned out. I managed to cook. Hubby was already taking a half day and came home a little earlier than planned to pick up some of the kiddo schlepping to give me more time to recover.

I made harissa ground beef pitas with cucumber tomato cilantro relish and yogurt sauce. I was not super impressed with the harissa spice blend myself, but my family loved it so it's all good. We have a fantastic restaurant here that has amazing harissa and I don't think anything like it is commercially available. That was the harissa I was aiming for, but I missed. Oh well. It was good enough. Nothing wrong with that, right?

The asthma is less of a bitch today and my energy was really good this morning. I slept well aside from some hip pain** waking me up. So far I've worked, done laundry, and dropped an experiment in the crock pot. At the moment, I'm resting, trying not to wear myself out. I'm starting to feel a little tired and I have irises to plant later today--that's the big goal.

 I'll keep up with the pulmicort for a while just to be safe. It's working and I don't want to backslide again.

As for the fatigue...it's interesting to me the way covid is legitimizing chronic fatigue syndrome. As I watched long covid develop in real time, I realized, I've had long covid since before covid. But it's all tangled up with the tumors so it's hard to tease out what's a post viral syndrome vs. me being a really fucked up zebra. 

I have no plans to pursue a chronic fatigue diagnosis. There's not much treatment. And there's been a benefit (for me) to not having a label. I didn't know better so I pushed harder. I've done more as a result. I don't want to lose that and I've already designed my life around my limitations.  

I'm very fortunate I can mostly rest when I need to. 

Even before covid, I was already pacing my exercise. I could go hard, but then I'd need a full day of recovery and the next workout would have to be very light. I never pushed. I listened to my body, and I found workouts that were less depleting that could also build strength. I had a balance.

Right now, I'm at a stage where I'm just trying to get back normal daily life. Exercise isn't even on the list. Maybe this fall I'll start walking a bit. I'm hoping that will pan out.

I imagine the pulmo would be 'this is sleep apnea' but eh...as someone who is tired a lot and has a lifetime pass for the health struggle bus, it's more than that. Particularly after such a stubborn asthma episode.

Okay, on to the asterisks and let's wrap this thing up! This post got long. Sorry!

*But false positives, patients will be subjected to over testing, but but but. Stop infantilizing people. Stop concern trolling. People have a right to know even if it's confusing. Even if it's not turnkey. We're so sure this is all poor outcome and no benefit, but we've literally never tried it. Maybe question the premise a bit. What's weighted more in the decision tree...

-limited capacity and resources,

-profits,

-over testing?

And might there be a profit incentive to prevent knowing more about our health? Money leads. Projecting onto patients or care providers is a divide and conquer diversion tactic. If physicians hate patients, and patients hate physicians and we have in groups and outgroups among care providers and we concern troll patients with 'oooo over testing bad and costing you money'...who wins?

What's the fix? I believe the start is unions since we are unlikely to get meaningful government regulation in the current environment. Physician, nurses, aides, techs, RPT, PT...they all should have unions that can ensure higher pay and push back on the corporatization of medical care. It won't be perfect, but undermining and invalidating the current power structure is a good first step. The status quo needs to go smash the patriarchy style.

Then more patient activism, which is hard because we are tired and everything is harder for us and we lose so much time to appointments, but we need to somehow do it. Somehow.

And also the world need ethical billionaires who use their capital and leverage to create win-wins throughout their supply chain. I've cut business deals. I've managed large multi-million dollar projects. I always balanced the profit with what the right thing to do was. It can be done. It's unusual, but it's really about character at the root. It requires you to care about the quality and impact of outcome as much as you do the profit. 

We have really shitty people hoarding capital and power and not caring who they hurt, not caring that it's not sustainable even for them personally. They lack the integrity and imagination to even attempt to do better. These are not the kind of people who should have all the money in the world. 

I've rubbed elbows with some very wealthy people and politicians. I've seen these operators up close. They're like cockroaches. For every one you see, there are 10,000 more gobbling up with they can without any regard for anyone else. 

Because aside from names you would know, I've met the same kind of people in every walk of life. From preachers to CEOs. I've seen them steal, lie, cheat. Go to jail for financial crimes. Prey upon girls, which is never punished. Behave like absolute jerks, also never punished. 

I haven't met any who deserved to be rich. Not one.

Let's stop giving cockroaches all the perks and free passes. Let's become allergic to Trumps and Putins and Orbans...something that would be a major evolution in our species' social dynamics. Strongmen don't make anyone strong. Let's try valuing competence and science over money and power. See where that takes us.

**a sign I've either been slacking on my PT exercises or overdone it (when covid isn't in the mix).

Attack of the BS

 Went to the grocery store by myself for the first time in forever and had an asthma attack. Bah. I knew it was coming. The asthma has been brewing since yesterday. I used the albuterol inhaler before I got out of the car, but that didn't stop it.

 It feels like there's stuff in my lungs that I need to cough up. I've felt that way since the APAP. But then I don't seem to ever cough up anything.

So that totaled me like a bug on windshield. Just splat.

I was very weak--just all the energy gone from my limbs like that--and short of breath. It seemed like my day was over before it had even begun. 

Just when I had a whole harissa, berbere, cajun menu planned for the next few days. 

Fortunately, I took more albuterol, added Pulmicort back in, then sat on my ass for a few hours and things seem to be improving. We'll see if I end up needing prednisone or not again.

Hopefully I'll be able to cook dinner, but I've lined up hubby for sous chef duty if I can't. 

Muddling along over here. Come on, lungs. Get your shit together.

Apnea Complex Fun

 

I feel like I slept great last night. I slept straight through and woke up on my side, breathing through my nose. Seemed like a good start to the day.

I'm still tired though and that makes me feel like apnea is killing me lol.

Like, I'm anxious about sleep now and I stress about driving. Am I awake? Am I paying attention? Do I see things? Is my fatigue pathological? Is the current fatigue level one where I shouldn't drive? I should be treating this apnea, but I can't because asthma, but I should be treating this apnea, but I can't because asthma and and and. 

Sigh. 

Their fear based patient education got under my skin. I'm trying not to let it. I'm clearly better without the machine...but they still got me. I'm a rule follower at heart. This is making me twitchy.

Anyway, despite the sense of sleeping well, my lungs are not great today. Why? I don't know. They should be fine. Stupid windbags.

And by the way, you do know, these blog posts are, at their core, a sign that I can't function fully? Right? When I can do all the things, I'm not here to whine on the internet. When I can live my life, I go live it. When I can't, you get daily blog posts.

Fun.

I'm trying. I really am. I worked on mastering a major work goal this week and made great progress on learning the tech. I'm angling to make dinner more often as 1) I'm a better cook than the others and the food has been sucking lately--the one person willing to cook the most has an, shall we say, interesting palate, and  2) we had tater tots for dinner last night because no one wanted to cook. And to be clear, that's all we had. Just tater tots. They were delicious but we need to do better. So I'm going to try.

What is that Yoda says? Do or do not. There is no try. Well, clearly that alien leprechaun never had covid, but I shall attempt the do part harder. We'll see.

Kid news: Called the ped to ask for a prescription for ~$600 of mobility aids the PT has suggested. I'm not sure if insurance will cover it, but if they will, we met our deductible and may as well try. Right? 

It's interesting to me that the ped is all 'no problem, just have PT send me what they want prescribed' and no one is giving side eye to the complete lack of a diagnosis. Or the fact that this has actually progressed since she was a toddler. (Possibly from the Lyme or Covid, but also, you know what? Maybe we don't have the right diagnosis.)

Is this a thing in medicine? We just throw mobility aids at kids and don't even care why? I didn't think it was a thing, but it seems to be?

Hmmm. I actually know some peds in my circle well enough that I might ask what the norms are on this one.

(At the same time, I think the issues she's having are falling into an area where there aren't a lot of specialists. So maybe our experience reflects that. I just hate not knowing. I like to know. Especially when it's my kid.)

Meanwhile, we keep trying to move forward and give her good experiences and inputs. Life doesn't stop even if your body's idea of walking has a lot in common with a drunk zombie. Some of our homeschool stuff started this week and so far, so good. Her (very) part-time job just raves about her and she has every right to feel proud of herself. 

Genetic Golly Gees

 Talked to the geneticist.

I don't quite know how to explain anything.

I'm still synthesizing.

We're finding stuff, but not THE stuff.

And stuff that really really should be there (even per the geneticist) isn't.

So right now it looks like I'm falling into the 'wait and see what other data comes in, in a few more years we might have the information we need to say it's this or that.'

And also the 'tell one side of your family about this for their kids and the other about that for them and their kids and your kids should have genetic testing prior to any pregnancy.'

So. Definitely stuff. But nothing that's adding a lot of clarity right now and some things that are really not what anyone expected...pointing to a blind spot in the science.

Basically genetics is trying to read genes when they only know 1/8th (random number) of what anything means. We're still missing so much data. There's no dictionary, just a mish-mash of post-it notes (figuratively speaking).

In 10, 20, 50 years, I think this will be more conclusive. It's all still so new and there's just so much missing still and it's feeling like the data crunching capability is a bit lean. As I've mentioned, I've been really surprised about how bare bones the science is.

I will be back with more to say at some point. Right now I'm just blink blink. And waiting on some papers the geneticist wanted me to see as there have been some new studies that just came out that seem relevant. (And to be clear, they aren't looking for my opinion or anything, just sharing, but I don't feel like I can comment with any intelligence on the information until I've seen it for myself.)

It's funny. I know what this all means more for other people and not really for myself. Not the goal, science. Not. The. Goal. But thanks.

PS: I did finally hear from the pulmo but I can't open the message. Ha. Because of course. Literally a fucking decade with no problems and now the system decides my password is invalid. I need to tell them the secret to life using calculus and the forensic blood spatter of an alien homicide to reset it. Meanwhile, these fucking apps are selling my data to Facebook and who knows who else. 

I'm just...whatever. I care, but like, not enough to fight for it. It'll depend on my energy and attention as to when I get to it.

Nice Treats

 I can breathe. Like, for real, real. I can breathe. The asthma appears to be completely gone today.

Breathing is so nice. It's almost euphoric. To be able to climb stairs and walk and talk...it's a nice treat. One thing about asthmatics, we never take breathing for granted.

I finally feel like I'm leaving behind the fatigue associated with that whole episode. As I come out of it, I can see how bad it really was just from the contrast between how I felt then vs. now. Wow. It was pretty bad asthma. I really should have started steroids sooner. I don't think I was 100% on judgement...the asthma addled me.

Still have not heard from the pulmo. I'm not particularly upset as I'm not super interested in jumping straight into whatever other fuckery this will trigger and I'm enjoying the respite of the moment.

My spidey sense says I'm going to end up with a new pulmo and some second opinions. But it can wait.

I am sort of kicking myself as I'm realizing I did the sleep study just weeks out from acute covid. I don't know...maybe it wasn't the most accurate thing ever? Flip side, it could be my new normal. Can't assume it's fine either though. We'll see. 

Work is overwhelming. I had one thing go super well and then a carbon copy of it positioned to do even better flopped in a weird way. And I'm just so behind. So so so behind. I'm not even sure how to catch up. Other than mercilessly clearing my schedule and jettisoning various goals and projects and to-dos.

Letting go, giving up, moving on seems to be the only answer here and I hate it. 

Kiddo started school today. We are emerging from COVID isolation this year--we gave humanity time to prove that science could beat a bug, but it turns out humans only amplify pandemics and bugs are still far faster than science. The bugs are out of the barn (covid, polio, monkeypox oh my!). There's no going back. We have to carry on as safely as we can. 

She's in a co-op that operates outside and with open windows and masks. They will be doing high school Biology and hopefully she'll find some friends. We moved right as the pandemic hit and lost our social network and then she's had such health issues, it didn't matter. She would have struggled to socialize anyway.

Then she has the two college classes and a mix of online classes and whatever live in-person experiences I can figure out for the rest.

OH! And the fever isn't totally gone but it seems to have come down. We don't know why, but the functional ped (again, part of the big hospital system, not going to whacky woo clinics, this is mainstream medicine woo by way of Infectious Diseases) prescribed a bunch of Chinese herbs. So maybe? Flip side...we have had the fever go poof only to come back. We'll see.

Unfortunately, that doesn't seem to do anything for the joints.

Get a Clue, Please

 I'm getting pressure to do the things I would do if I were healthy. People around me want normal. They want to have expectations.

But that ship sailed and then hit an iceberg called Covid-Kidney Stone-Sleep Apnea-Asthma.

I have not had a break since April. It has been non-stop health chaos since May.

I'm sorry. Everything's broken all at once and I can't hack it. 

I'm tired. Nothing works. My body won't leave me alone. Viruses won't leave me alone. I'm constantly harassed. Take a number and wait. I'll be with you just as soon as my cells decide to function all at the same time.

Until then, I'm screwed and you're SOL. 

My #1 job is the teen. And that's about all I can do well right now. It'll have to be enough. Sorry.

Off and On, In and Out

 And no word from pulmo. I can see they've seen my message. And nothing. After previously being attentive and indicating they wanted this kind of communication from me. (They do a lot through messaging apparently. I'm not sending them stuff unsolicited.)

I'm off prednisone and still short of breath. Whatever this was, it was significant. And odd. Persistent asthma is typically triggered by a respiratory illness for me. Exposure type attacks generally abate rapidly. Not this time. 

The adventure continues...

Day 3 Prednisone

 Finally my breathing has turned the corner. It was a looooong three days. I'm still short of breath on activity and stairs  and I'm deeply, deeply exhausted BUT my peak flow is finally back to normal.

I don't usually monitor my peak flow much but they were kind of hyper about it at my last pulmonary function testing so I checked it this latest round of asthma.

Low of 350.

Normal is 650. That took 3 days to get back. Usually I feel better faster than this.

I'm leery of what happens next. I hate all my options. It'd be better if the APAP had worked. Now I wait to see if the provider continues to be as solid as they've been and possibly face surgery.

Bah. 

And of course, now that I'm up for working at a 100 mph, the internet seems to be more out than in across the entire state today.

Bah humbug.

But the stuff I had to renege on work-wise has made me stop and think. I was planning to get something off that ground that has potential to grow into another five/six figures gross per year (starting off in the thousands though). I had to table it as I was so sick and I knew that there would be a lot of medical fuckery incoming because I had such problems with the APAP. If there's a surgery...that's too much downtime, too many unpredictable, chaotic inputs.

You need stability and focus to run a business. You can't be 50%, you need to be 1000%. I've been really fortunate that I am good at leveraging things half assed, but there is a limit to that. You can't half ass everything all the time. So now I'm wondering...maybe I need to back off and rein in my work? Should I not try to expand and increase revenue? Is it worth the risk? 

I'm undecided at the moment. But I'm feeling like I got too ambitious. That I forgot how easily my health derails me. I don't get the same choices, opportunities, and outcomes as folks without disruptive health stuff. I have to balance it all very carefully.

Did I forget myself? I think I may have.

Outsource it, right? I wish. I do outsource a lot of admin work, but there's an element of curation to what I do, to it being me watching and noticing and putting things and people together. I'm like a matchmaker between people and ideas and strategies. I can't just hand that off. Other people don't see or recognize systems and patterns like I do.

So the answer would be to find something less personal. I have no idea what that would be though lol. That's not how my brain works. That's not where my magic is.

I will say, I wish I'd learned about the stock market. I wish I liked the stock market. I'd be good at those data patterns and much more financially secure as a result. I just...loathe numbers. I'd rather not, given a choice. But it would have been way more efficient.

 Sometimes I still try to talk myself into it, but the way I earn money has to be personally satisfying to me or I'm not motivated. Which is probably my super annoying toxic trait lol.

A Collage of Mad Science in Old Photos

I used to have a near photographic memory. Not so much anymore over here in old hagville, but I still retain all sorts of random stuff from back when all my neurons were new. And I have an innate affinity for science, although the more numbers and formulas, the less it sticks.

So years and years and years ago, back when all my knees worked and there were no tumors or asthma, I read you could test how much dust was in the air with a plate and vaseline. Some kind of home science experiment thing. I remember thinking, huh, yeah that would show you kind of what's floating in the air.

And I thought nothing more of it.

For literal decades.

Well, a millenia later with this machine pissing me off, it all came back and I thought...how about I check and see if there are particulates or not? If there's really anything flecking, it'll show up on a white plate with vaseline.

Why yes, I am that brand of insane. But you know, it would work. Roughly.

I did my best to set up a good test. Obviously I am not running a professional lab so I can't rule out some kind of error on my end. I did two set ups...improving upon my first in an effort to keep out contamination and let the machine run for several hours.

And yes, Virginia, there really is a Santa Claus stuff flecking out of the hose. Like, for real, real.

Well, FML.

AND you know how I said there's no odor? There is. It's not strong so I'm not sure if it was a problem or not. If it's got VOCs in it, it's probably part of the issue, but I have no way to know.

I either have a faulty unit or there's a bigger problem here. Hopefully the fact there are so few complaints means it's just my unit.