Drama Time- It's the Machine

 Well, holy shit. After 10 days of tearing my hair out and googling my fingers down to the bone, I finally found reports of patients having issues with the machine I have. Not a lot, mind you. But at least it's not just me!

They say they have issues with chemicals from the plastics in the machine and are ditching it for models they know don't bother them. I don't think they have asthma.

I'm trying to get in touch with them to learn more about what they experienced and how they knew it was the machine.

And then I found a better search term and bingo. People are having issues with odor. I don't have an odor but there's definitely an acknowledgement that there's some offgassing. I'm SO ridiculously sensitive to that.

And I'll bet you poly foam shit's flecking. Or there's some degree of microplastics being power blasted into lungs and that some small % of patients sensitive to even teeny tiny particulates can't deal.

I've got a message out to the pulm. I'm working on figuring out whether I contact the company or file something with the FDA or what. Because if there is something going on, I really hope someone somewhere will want to find it.

But probably that's not where the energy is. I'll try at least.

And no. I have no idea why it's always the nightmare scenario for me. I really wish I knew what I could do differently to avoid these drama llama situations. I saw a doctor. An expert. I did a test. Test said sleep apnea. Doctor said use this machine. Machine company swears up and down that 'our machine is safe.' So I used the machine and then my lungs blew up, and just like that, almost 2 weeks of my life gone. Why stuff has to go off the rails for me, I wish I knew.

I think sometimes that medicine must be way more broken than people really realize. This is why I was absolutely appalled at how cavalier everyone was about Covid. And now they're all upset because medicine can't fix their long haul. Like, duh. That's the baseline for far too many things. 

You want a fix? Break your arm or have a small heart attack. Don't get complicated. They can't help with that, and are far more likely to do more harm.

On that note...eat your broccoli and exercise if you can manage it. Stay the hell away from medicine. I'm still on the asthma recovery wagon at the moment, so I'll be right behind you just as soon as I can.

I'm feeling dodgy enough that I'm a little worried this isn't going to be simple though.

Update: I filed a thing with the FDA and sent a quick note to the manufacturer as well. I do see some other complaints but nothing exactly like mine. Someone did report a toxic odor that impacted their breathing but I didn't have an odor. Some other reports of congestion and respiratory issues. An older model where the foam failed and backed up into the tubing...that poly foam shit is NOT stable, guys. It's just not. 

How did I know about the FDA? A billion years ago, I worked in medical manufacturing and managed applications to the FDA as well as overseas equivalents thereof. Not an expert, but I know a bit more than the average person.

Prednisone Party

God. Sometimes I love prednisone. When it's good, it's very very good.

I can function! I can breathe!

The APAP/CPAP still tried to tank me. I could feel the asthma brewing underneath, but the prednisone won out. Well, mostly it did. I am short of breath still, but it's nowhere near as bad as it was.

I have NO idea why this is a problem. I keep searching, searching, searching but all I can find are old studies (2007) that say this shit is amazing for asthma and a lot of what look like industry funded sites parroting the same.

No one anywhere I can find is having problems. Hmmm. Maybe I need to ask around in the asthma groups. That's one place I haven't tried. I don't usually hang out there too much. 

I can't be the only one. Hang on a sec.

Okay. I searched all the asthma groups I could find. No one is having attacks like this that I can see. Some are having to use nebs before they use their machine so it must present some degree of trigger. A lot of people say it helped.

Great. 

That makes me wonder if there's something wrong with my machine? Like, why would I have this seemingly singular experience?

This better not turn into some weird rare fuckery shit. I swear to God, if this is more whack-a-doo bullshit from my body, I'm going to be so pissed.

I'm ditching the machine now until I hear back from pulmo. I'm done. Something's wrong. With me or the machine. I'm not going to poke the bear anymore. My lungs deserve better than that.

I Blinked

 

So I took prednisone.

It came down to grocery shopping. Well, that and work.

I needed to go to the store. Hubby would do it, but it's tough to outsource right now. Starting next week, the kiddo has some outside activities this year where she needs a lunch and I have no idea what we're doing for that food-wise, which means being in the stupid store and not dying of asthma while I'm there.

To be fair, I gave this thing miles upon miles of rope to sort itself out. I've had asthma for over almost two weeks. I kept thinking I'd get better and wouldn't need prednisone. In part because the trigger is a limited scope irritant that maybe I would grow accustomed to. 

I have really been optimistic here. Truly. It may not sound like it, but to hold off on prednisone this long...that's optimism. Misguided. But optimism nevertheless.

But I couldn't function. I'm not sure how well I've articulated it, but I've been a zombie this whole past however long. These posts and a few admin tasks for work are pretty much it. I haven't cooked. I haven't gardened. I couldn't carry a conversation. I've just sat and sat and sat, waiting, waiting, waiting to turn the corner. 

And then I ran out of time for this bullshit. There were things I needed to do, where I had to function, and it got to where I was reneging on some work things, so the runway ended. I extended it as long as I could.

Stupid APAP/CPAP. Stupid covid. Stupid everything.

Hypocrisy

 When you have sleep apena, the scare tactics come out.

You're going to have a heart attack.

A stroke.

A car accident.

People are going to DIE.

You could KILL someone.

Then they fuck you up with the machine and you are so sleep deprived, you have no business doing anything but binging Netflix. Even then, you're so glassy eyed, you're mostly staring without understanding.

And they're mum.

It's fine. No need for time off. Or FMLA. Or short term disability.

Suck it up. We only care when it increases revenue.

But a lot of people feel way worse starting CPAP/APAP treatment. It's inhumane to pretend it's not happening and that it doesn't present a risk.

In my corporate days, I could blow up planes with a bad decision. That's why I left when my kid didn't sleep for shit. I didn't feel comfortable with the risk. So. Like, what the fuck, medicine? Seriously?

I'm lucky. I just peaced out of work for a while with this. It's not ideal nor sustainable, but I don't get fired. I just lose income. At least I have the option.

I can't imagine how other people who struggle to adapt to it manage. I see a lot who don't feel better until after a year (or more!) on CPAP/APAP. That's insane! 

Do better. It's not cool to blow up people's lives like this and pretend it's not happening.

Asthma today: It's early and I haven't done much and I'm prone to being overly optimistic right when I get up before the day drop kicks me so...grain of salt. I have a productive cough. The skin on my chest can't be moved. You can feel every bone and dips between where the skin is sucked in--which, yes, that sounds serious, but it's not always the best indicator in my experience. While it means the asthma is active, it's not typically predictive. The cough is more concerning...more indicative of asthma digging in and/or an infection brewing.

All that said, I think I'm a bit better than yesterday? Maybe? Or I'm still dreaming. One of those.

Out of Order

 Ha. Some of my posts are posting out of sequence. I think.

I don't know.

I do try to have the posts be sequential even if they aren't tied to a finite timeline. I don't want to give you X before A, but I think I did?

I'm pretty drunk on lack of sleep and low oxygen from the asthma so who the hell knows which end is up anymore.

Not me. Well, if you see anything weird...I'm not 100% despite my best efforts.

Okay. Let me go check the last thing I wrote so I don't repeat myself or forget something or screw this up. One second...

All right. I'm back. Pulmo tweaked settings. We all hoped that would work.

And meh.

Not so much.

The asthma isn't as severe, but I'm not able to do much. I'm too short of breath for much activity. Even talking will get me. It's not really tenable.

But the fact it's not as severe maybe gives weight to my theory of a contaminated machine or maybe even off gassing of new plastic parts.

Pulmo says to give it a few more days and see. I'm probably going to take a night off here soon just to give my lungs a break.

And sadly, surgery sounds heavenly at this point. This is miserable. I'm absolutely exhausted. I've started losing weight again because I'm too tired to have much appetite. I also have no sense of time so I forget to eat on top of that. 

Just what I need. More illness associated weight loss. That's always healthy, right? Argh. (For those who don't remember, I mostly lose weight to illness and then regain it once I'm better and then struggle to lose it when I'm healthy. Maybe the Ozempic will trump that pattern, I don't know. But I really really really do not want to lose weight like this. It doesn't end well in my experience.)

Anyway, I'm in a holding pattern. We'll see what happens next.

I met with the dietician and we tabled the whole thing because everything else is too much chaos. I don't have the energy to cook or shop so it's kind of pointless until I regain some stability. They just urged me to eat so I don't tank my metabolism. I'm trying... I like food...I'm just in an appetite suppressed fog.

And the geneticist is calling asking follow up appointment. Not sure what's going on there. Probably nothing with the way it's been going so far lol. But I keep forgetting to call them back until after hours...see also, the aforementioned no sense of time right now.

The teen...PT is now matchmaking between patients. Which is nice but kind of odd. We've got numbers and names of other kids to meet up with. So that's cooking. We'll see where it goes. The school year's about to start and the teen is going to be busy so... 

The thing is, we're being lumped in with connective tissue disorder folks but we have no diagnosis. I don't know. Maybe they'll know a doctor who can diagnose whatever it is that's going on here. This is so frustrating.

Pleasantly Traumatized

 

I messaged the pulmo a polite version of what the fucking fuck and what the fuck do I do now? 

And to my surprise, they're already talking surgical referral.

Huh.

I appreciate the proactive bent of the pulmo. That's a thumbs up all day long. I don't see it often enough in my medical care.

But...

I mean...

My thought was, if this apnea shit is really happening, I'd like to make the machine work because the other options are a whole other hellscape. Very brutal surgeries (at least it sounds that way to me). Implanted devices that zap you. 

Hard pass, guys. I just want to live my life and be left alone, but my body keeps dragging me back into the abyss of medical fuckery and on here to bitch about it.

Sleep apnea is not fun. It's not a problem you want to have. All the solutions are torture.

I really wanted to avoid surgery and implants. But honestly, this asthma is so bad and so fucking me up that I'm now willing to consider amputation without anesthesia if that's what will work. Whatever works. Just please Jesus Fuckitol let me sleep and breathe.

We've agreed to try a bit longer. The pulmo tinkered with the settings on their end so we'll see. But I'm going to call it this week. It's not going to take much more before I end up on prednisone at this rate. It's to the point where it doesn't matter if I even have good sleep. The asthma is sucking me dry worse than any sleep apnea ever could.

So yay proactive pulmo. Boo surgery and implants which are apparently going to make up the menu I get to order from.

How do I get a different menu? I want the one with free money, ice cream, and cheesecake. Come on. Hook me up.

Sleep Is a Battlefield

 Day 5.

But first, Day 4.... I didn't use the machine at all. I'd reached the point where sleep of any quality was the most important thing. So I ditched the machine. That was the right move. It gave my lungs more of a break and let me catch up.

Day 5 I went back to the machine. 

It seemed fine. I thought it went better. But this morning I have a productive asthma hack and my lungs feel boggy. I'm not sure what's going on.

This isn't supposed to be possible. (Although let the record show CPAP/APAPs ARE associated with respiratory and sinus infections. They are definitely lung irritants. We're just not recognizing non infection irritation yet.)

Sooooo. What do? I got no clue.

Probably time to email the pulm.

To be frank, since my body is being so whacky, experience shows this means we're missing something. Like, the home sleep studies are only 72% accurate. They have a significant error rate. And they don't collect as much data as formal sleep studies. It might behoove us all to do a real in-lab sleep study.

It's just a question of how much time we spend on pretending it's my 'weight*' or that it's not happening at all because it doesn't exist in the literature (which always grants an unlimited license to ignore the patient in my experience).

And if the goal was to give me a complex about sleep. I'm there. The machine is a great way to make sleep as angsty as a teen love triangle. 

Everyone says Pillow is abusive, but they don't know him like I do. Do I suck face with Machine, the stud everyone says is the hero except he's actually trying to kill me? Or stick with Pillow, the one everyone assumes is the villain? Who do I love more? Do my friends really see something about Pillow that I don't? Should I be concerned? Aaaaaaaah.

And, lastly, here's an informal patient survey about sleep apnea after covid. The apnea covid connection doesn't have a lot of medical literature on it yet, but there's a clear pattern in patient reports. You could see how covid caused type 2 diabetes in a similar pattern long before the studies confirmed that. Like, it's a thing. Hopefully science catches up soon...

*Reminder: Not morbidly obese. Pudgy maybe, but much closer to normal weight than not at this point. 

Colonizing Mars

Day 1: 3 hours of actual sleep. 5 hours wear time. Difficulty breathing during the day. Feeling markedly short of breath but not asthmatic.

Day 2: 4 hours of actual sleep. 6 hours wear time. Asthma launch sequence triggered.

I didn't have headaches before CPAP...but I do now. And a neck ache. And I'm sucking on albuterol like it's a baby bottle. Sigh. 

The mask didn't bother me initially, but three hours in, it was way too much sensory input. Oddly, my nervous system didn't acclimate, it instead alerted me there was a thing on me and sent a lot of inquiries... 'as per my last email, perhaps you want this thing off you?' cc: the CEO, the media, and all your ex-boyfriends. 

It feels like you're sleeping with your head in a cage. I'm surprised I sleep at all!

I'm looking to add a chin strap to prevent dry mouth and hopefully stop triggering the asthma (and protect my teeth)...so that'll be more crap strapped on my head.

Then I'm going to add a sleep bonnet to keep pressure off my hair. So that's layer three.

Oh and an eye mask. Did you know you can fuck up your eyes with this? People have had corneal abrasions even. I'm only two days in and already feeling it and supposedly I have a good mask seal. So that's layer four.

It's ridiculous.

We're going to live on Mars, but sleep requires a suit up that would rival an astronaut helmet.

Absolutely ridiculous.

Med students should all have to spend a week sleeping with this shit just so they know. Maybe it'll inspire some innovation.

My goal at the moment is to make the time I need to make and then take it off. So hybrid sleep. Half on, half off. Maybe I'll start sleeping longer, but until that happens, if I'm up and I've made time, I'm taking it off. I at least have the ovaries to suck it up make time.

I have no idea what I'm going to do if the asthma doesn't adjust. I won't be able to use it at all then. This isn't small asthma, it's medium-large asthma. It's interfering with normal activity.

I asked about that at the set up appointment. Blank look. As if no one in the history of time has ever had twitchy lungs. Eye roll.

Do they practice the blank look in school? Do you have to master it to graduate?

You know what they told me? They told me to lose weight.

Fuck right off and up your ass.

All my weight is way down and off my chest. My neck and face and chest don't have any excess weight which is the actual risk factor.  In fact, my boobs are smaller even anymore.

But it's easier to pretend that's not true and any excess weight is the problem. 

Fuck off. Seriously. Fuck the fuck off.

The way they construct macro level narratives and never develop any nuances is beyond irritating. They don't know the science. They don't care. They only care to the degree that things fit their biases. Their training doesn't care or else they'd be way smarter and control better for bias.  And instead of solving patient problems, they just pretend it's weight or whatever other causative factor they need it to be today.

Did you know, when I explained to the pulmo that covid was in my nerves and joints, reactivating all the neurological symptoms of the cyst on my spine and the osteoarthirtis in my hips until I tossed and turned all night because the pain was so disruptive, that they diagnosed me with restless leg syndrome related to sleep apena?

Did I stutter? Do they not understand spine stuff? Or arthritis? Or did they just need to justify a narrative irrespective of what reality was?

And if you think I have restless leg syndrome, why is treatment not offered? Why wasn't it disclosed to me? Why was it just magically on my chart without breathing a word? Are we playing insurance mind games? Is that it?

I get working the system. But you can't cause harm on the backend doing it. This isn't benign. And people have a right to know what new diagnoses they are picking up.

Irrelevant bullshit is piling up in my chart. This isn't the only example. I have other bullshit. The IT sometimes gives me new diagnoses from doctors who aren't even in the system anymore and haven't been for years (I wonder how that works?). 

When you have shit that really matters, that's hard to understand, this junk in your chart actually causes problems.

But it's not about me. It's about what they need. 

OH and I finally realized my tumors aren't even in the database. They have to give me hepatic adenoma because adenomatosis doesn't even exist. So here I am trying to be precise and accurate, repeating what I've been told (because adenomatosis is really a whole different thing, it really is-the clinical course is quite different and the risks are different as well) and all I've been doing is causing confusion. Great. Super. Awesome. 

Going forward I'll just give them the wrong diagnosis because at least that exists.

Again, it's about them. Not me. Patients must understand they serve the hierarchy.

Can't wait to do that on Mars.

Ankle braces have arrived for the teen. She is over the moon. They're helping her gait issues. And she's thrilled. She's so happy, she's actually been walking a lot more than usual, delighted with how they help keep her ankles from rolling. Like, I have to listen to long, breathless with excitement kid monologues about how amazing this is lol. It's that awesome. 

I just feel like there should be a doctor we talk to about this. Like, there should be more effort to understand  why she needs this and why she finds it so helpful. We should know what's happening so we can optimize properly, but we don't. I don't like not knowing why.

Funny...I'm getting too many diagnoses. She can't get enough. How strange.

On to sourcing the knee braces and crutches. 

Sleep Deprived x 3: The APAP Asthma Axis of Destruction aka APAP Causes Asthma Attacks

 The last half of the title is SEO for the poor patient who is having the same experience I am. Hopefully they'll find this post because, as far as I can tell, it is the only internet source in the universe talking about asthma attacks caused by CPAP/APAP machines.

So. I lost all of yesterday to asthma. It was pretty bad. Zombie bad. I was non functional. I managed some laundry, a blog post, and that was it. I had nothing else in me. I wasn't competent to drive. I was beyond struggling. It was beyond miserable. 

It absolutely sucks to be randomly sidelined like that. I had plans. Things I needed to do. Didn't matter. This sleep apnea bullshit wiped me off the board. Boom. Done. No life for you.

I had to add in a steroid inhaler. Then more steroid inhaler and a lot of albuterol. By bed time I'd been sucking on three different inhalers and the neb all day with little improvement. It looked like I was on track for prednisone.

I googled, googled, googled. I had to fix it or I was screwed.

All I could find were articles saying that apparently CPAP/APAP is a miracle cure for asthma. Yet there I was having a beyond unsustainable asthma attack. Something didn't compute.

Out of desperation, I reviewed all the settings on the machine thinking there had to be something I could do to improve things. 

Well, I should have known. The guy who invalidated every little thing I said at the set up appointment was full of shit. Shocker.

The auto ramp feature was off. This feature keeps it low key until you're asleep, which not being used to the machine yet, is kind of important. I was being forced to go in at full tornado assault.

They'd selected the wrong mask in the settings. I have no idea how that impacts the machine, but I assume it has some relevance.

And they hadn't enabled (or told me about) the Expiratory thingie. This is a setting that has the machine dial back the pressure when you exhale. So you don't feel like you're dueling with a hydra to get the air out of your lungs.

So basically, I'd been set up to try and breathe in gale force winds. As it turns out, that's really difficult. You'd think air slamming down your throat would increase your oxygenation, but I find that I can't breathe at all. There's no space for YOU to breathe because the machine fights you for it. The machine wants to do everything.

Pauses to wonder about how CPAPs/APAPs would fit into Stephen King's story with the machines attacking people--sorry, brain isn't working well enough to remember the title and google can't figure it out either. But I'm pretty sure he wrote it before CPAPs/APAPs existed. Otherwise, he left some real nightmare fuel on the table.

 (And in reality, some CPAP/APAP models have been poisoning  patients with flecks of poly something but not my machine the manufacturer promises while also admitting they too use a poly something that comes into contact with the air flow. But it's fine. Absolutely fine. A big corporation with a profit incentive wouldn't lie, right? At least I can always get a check for three cents from the class action lawsuit if anything bad happens...)

Anyway, I further realized that my machine wasn't new. This was not disclosed to me. I was given the impression that everything was ready to go and that I had a new unit. I do not. It's missing all the original packaging. All of it. I didn't know that until I watched some YouTube videos and saw what it was supposed to look like.

I don't know how clean the unit was. It's quite possible I was given a machine used by someone else previously and who knows how well it was cleaned. Ergo, I washed everything thoroughly.

So I sucked down a million meds. Washed washed washed the machine. Slapped on the mask and hoped for the best, but fully expected I wouldn't be able to wear it long.

To my surprise, all the tinkering I did made it more comfortable. I also found out how to take a deep breath without triggering the system to attack me like a feral chihuahua made of wind. See, the machine is supposed to know you're awake and leave you the fuck alone EXCEPT deep breaths are triggering no matter what.

Well, I take deep breaths. While I'm awake. Because I'm a living human who breathes. 

But apparently this registers in the sensors as a sleep apnea episode that needs to die. So I get a face full of hurricane and then I can't get the deep breath I need and then I feel like I can't breathe at all. It's a bit like an externally applied asthma attack.

Not a bit. Exactly. It's exactly like an asthma attack. 

I can't swallow the air that's coming at me at the speed of light fast enough and so I choke. Hard. Then I end up air trapping on top of having an ache from not being able to get the deep breath my body is asking for. Picture doing that all night as a fire hose of air dries out all your tissue, triggering inflammation. That's how the asthma started. It's a bunch of second, third, fourth order cascading effects from the machine.

I have NO idea why no one but me sees how this works. Because it's really fucking obvious.

(Possibly I don't breathe normally? But I think we would've noticed that before now?)

Eventually, I figured out how to take deep breathes in a way the sensors couldn't detect. It involves some contortions of my lips that are hard to describe, but it works well.

Last night, overall, went better. I didn't sleep for shit, but my breathing was okay and I mostly kept my mouth shut (to protect my teeth...CPAPs/APAPs are hell on teeth it turns out because you're basically blow drying them all night long which is very pro-cavity--two days at the CPAP tooth salon and my teeth hurt already). Unfortunately, by the time something is causing a lot of asthma, I'm a little too skittish to trust it enough to sleep. 

So little sleep. But better breathing. The asthma is gone. Thank God.

The only thing left to fix is the starting pressure. This is an APAP so it's supposed to ramp up as needed, but I think they have the starting pressure set too high. I need something lower and less aggressive and with the way APAP works it should be doable. 

I am so dead tired today, I'm not sure I'll figure it out. I may need to call them to change it...I'm not sure. It all seems a bit bridge too far today. I can muddle through with what I have, hopefully get a good night's sleep tonight under my belt first before I attempt to be my own sleep specialist yet again.

 Please. I'm so tired.

Shout out to the asthma also rans:  Whoever had a bonfire last night that had smoke wafting in through our  windows and the skunk who sprayed right outside the house. Nothing like spending all day fighting to breathe only to have even more bullshit hit your lungs. Nice try, but I have n95s so put that in your stinkhole and smoke it.

The Wind Tunnel

 So in all the bitching I read about CPAP machines, everyone focused on the masks. NO ONE talked about the real problem. Which is the CPAP machine is essentially slamming a wind tunnel down your throat. Literally blowing up your cheeks like you're trying to swallow a sword made of tornados.

It's quite...aggressive.

I've only done the test session in the office so far and...well, the asthma did not like. Hopefully my lungs get used to it. 

But it's a lot. I'm thinking it's going to wake me up a lot...it makes me flinch when I'm awake. Can you actually sleep through a machine trying to stuff your cheeks with air like a greedy chipmunk? 

I can see why there's a 50% failure rate for CPAPs...

As for the kiddo, PT is suggesting arm crutches and braces. There's really something going on with her joints/muscles and I'm increasingly concerned we've never had an accurate diagnosis. I don't know that we'll get one now either. We always end up managing up via the PTs...the doctors never know what's going on. 

Is it Lyme making everything worse? Is something progressing? I have no clue and neither does anyone else.

So frustrating. But yeah. We're being told to buy about $1k in braces and crutches now. Do they not expect her to ever improve?

You know how I know she needs it? She's relieved. She's looking forward to the support. She's excited about being able to do stuff without worrying about falling. Zero fucks about how it looks. Zero embarrassment or anxiety. Just OMG I'll be able to do this and that and not fall. It's all benefits to her and no downside.

Parade of PITAs

Cortisol and ACTH were fine. I will say, I wish I'd managed to test earlier. There is some evidence that Covid hits adrenals hard and I actually know someone in real life who ended up with adrenal insufficiency.

By the time I could sloth my way to the lab, I'd improved somewhat. I didn't have that 'needs a nuclear reactor implant to lift an arm' kind of fatigue anymore and the weight loss had slowed down.

I'm glad it was fine. I'm just super curious about what it was.

Anyway, haven't caught my oxygen being too low lately. So hopefully it's done done? Or I'm being too optimistic again? We'll see.

I'm still tired, but overall increasingly functional. I have lots of mental energy. Not so much physical energy. I'm not really keeping up with gardening and I bail a lot on cooking and household chores. I'm just tired. BUT I have been swimming a bit. I do the household and gardening stuff intermittently which is more than I was. (We are absolutely drowning in green beans lol.)

I am also curious to see what treating the sleep apnea will do. And a bit nervous about how well I will do with the machine. I'm a finicky sleeper. And I already have so much melasma due to mascne from n95s--lots of discoloration around my chin--that I keep picturing CPAP mascne in the shape of the mask which will then discolor because my melanin is hyper af and I'll have a permanent imprint of the damn thing. 

With perimenopause, I'm also more of a night owl. It's not uncommon for me to be up until 2am and still feel like I get a good night's sleep (I'm able to let myself sleep a bit longer in the morning on those nights). Usually I read, which means, every so often, I'm up all night because I got hooked on a book. So I am wondering how the monitored usage works when you're a night owl who sometimes reads all night? Or doesn't sleep consistently?

In case you didn't know, they take away your machine if you don't use it. So I'm not sure how that will work. I mean, I'll stop reading at night obv, but that doesn't fix the perimenopause...which was why I started reading in the first place.

I guess I can wear it while I read?

In other news, I got this feedback because of the weird stuff I do with my brain in my industry.... "I just love what you do and how much I'm learning." High praise. I'm going to float on a cloud the rest of the week now. I know this may be hard to believe, but while doctors seem to hate me and are convinced I'm dumb and know nothing, other people do like me and feel I provide value.

And the teen is enrolled in college now! Hallelujah! OMG. We were SO behind. So so sooooooo super behind because of fucking covid. And there are so many things you have to do to get set up at a college. So many meetings. Enough paperwork to circle the earth a hundred billion times. OMG. But we did it! She's enrolled and registered now. PHEW.

She aced the stupid math placement test. Like, ACED it. She's an odd mathy duck. She tests super well and then falls apart in classes. For the first time, I have some insight as to maybe why this is...she told me she didn't remember some of the formulas so she just sat there and 'logic-ed' her way through the problems. She's literally just inferring math, and then, when the class is all structured and formal, her brain freaks. 

Huh.

So, anyway. She's in a liberal arts stats class, which is easier than the algebra they wanted to put her in. I'm not against her taking algebra, just not as her very first college math class. She needs to learn the ins and outs of what college is, what the expectations are before she hyperventilates and cries her way through college level algebra. (And yes she cried during the math placement test. But quietly. No one knew.)

But we did it. We got it done. I was sweating bullets, man. We were so behind. It could have easily gone the other way, where we missed all the deadlines and couldn't enroll. And if you're like so what? The thing is, we have a hard external limit because we have credits from the state, and if you don't use them, it's bad and you can have issues because of it. We had to make this happen and I wasn't sure we were going to make it.

Like, I'm still stressed about it even after the fact lol. But we did it. 

How Low Can You Go Limbo

So my oxygen really crashed. I couldn't even hit 95. Spent most of the day ranging between 90-92. I'm usually pretty bouncy. The swings tire me out, but the bounces up keep me halfway upright. But this was sustained lows without bounce. So that sucked.

The next day it was like nothing happened. I had my first good day in a long time. Good energy. Productive day. I didn't have any bone deep fatigue making it feel like I was trying to lift mountains whenever I moved. I even had the impulse to exercise. An impulse I smacked down because at this juncture, exercise feels like insanity.

It helped that I didn't have a lot of schlepping to do. Schlepping really tires me out. 

I would bet that low oxygen day was related to too much schlepping.

So maybe I'm recovering to the point of handling a more normal stay-at-home sedentary day? And still not up for exercise or lots of running around?

Or it was a fluke? If I got a Ouija board...do you think Covid would tell me?

Breathing Room

 

Yesterday my oxygen was crap at 92 and I lost all energy. It bounced a bit but stayed under 95 which was unusual. Today has randomly gone better, however. It's evening as I type and I'm still working, which I haven't been able to do for months. 

Let's see if it sticks.

And a funny...hubby thought some of my medicine was candy and ate it. He was quite surprised to find it didn't taste great. It was harmless. He'll live. But I've been laughing non-stop at the look on his face when I told him what he was actually eating.

On the US is sliding into fascism front, my neighbor helpfully informed us that everyone in his church is armed and ready to k- i ll li b erals. 

But get this...

We bought a dump of a house that, much to our surprise, turned out to be located in one of the most affluent areas in the region. We are surrounded by professional athletes, millionaires, even some billionaires.  Everyone drives like they're in the Indy 500 because they can afford the speeding tickets and don't care when they flip their car (seriously, there are so many car accidents here because they think they're untouchable - see also: no one wears a mask, covid isn't real, Trump won the election-like reality isn't their strong suit).

I don't understand how these white men--who have more money than you or I will ever see--have somehow decided they are the victims of persecution and the only recourse is apparently mu rd   er.

 Like what is even going wrong in their lives? If they don't like money, I'll trade them. (Also how did they even get that kind of money being this dumb and petty?)

The entitlement, fear, and hate is beyond bizarre. And to hear that churches are harboring (unknowingly or not) this kind of discourse is alarming. 

My response to my neighbor? A very dry, 'yes, if only Jesus had a gun and ammo, think of the things he would do.'

The irony sailed right over his head, much like facts and science do, but what else can I say? How do you even reach people this far gone, where the only option they find valid is destruction?

We are in deep, deep trouble here. 

So many white men are itching for violence. I don't see any mechanism to defuse their energy and redirect it in the works. 

What happened to golf? Do they not play golf anymore? 

Never Enough

 

Saw the specialist about working on a clinical diagnosis for the primary genetic suspect. They examined me carefully. They agree it's a possibility, albeit not a for sure slam dunk, there is some doubt, but not enough to make it a no...if that makes sense.

 

A kind of too much yes to be a no, but not enough yes for 100% certainty situation.  

And I would need biopsies to confirm things from a clinical angle, which has some downside in my situation. So they suggested the genetics testing is probably still the best avenue.

So I'm not normal, something isn't right, but I'm never abnormal enough. I'm in the ballpark, in the game, but I can't ever get to home plate. As usual.

Argh.

In talking with patients, I need genome testing, not exosome testing, which is what's in the works now. So this is going to take a while.

I think I've ranted here about how long medicine took to wield science on my behalf, that we could've known everything in thirty days with a concentrated effort. Well, I have to amend that. Thirty days only if the top level, least sensitive genetic testing comes in hot. If it's flakey, you'll need six months to a year to get through the various levels of advanced testing. 

Everything else, blood work, MRI etc...the criticism on time stands. We could have figured out a lot in thirty days. I just never had anyone bother to try until my body forced me fight with doctors in an effort to be able to eat.

I'd really like to see a flipped classroom model of medicine. Let patients test and utilize doctors to help sort through all the noise.

Oh but false positives. Oh but bite me. 

I looked at some of the literature on false positives and MRIs and you do realize the data is largely for knee injuries and low back pain, right? It would be dumb to extrapolate from a few bones to everything. But that's what we do for some stupid reason. My liver has not one bone in it.

And then there are the studies that...get this...only selected healthy patients with no health complaints. What a way to guarantee your preventative image study shows nothing. It reminds me of the 1990s study on uterine cancer...in men.

 


Important distinction: Preventative imaging, to me, isn't about imaging people with zero complaints. It's lowering the threshold to access imaging so more patients qualify to be sure we aren't missing something in patients symptomatic enough to seek care. 

I'd love to see a preventative imaging study on folks with lots of symptoms. That'd be interesting. Pair it with lab work too. With post Lyme symptoms, they've found a lot of folks (not all, but a lot) actually have another disease process that's active. Like, let's diagnose stuff, yeah? It's there. We can totally do this. But no. Medicine has decided it's more important to demonize Lyme patients and let a few egregiously poorly behaved ones dictate what happens to everyone.

(As evidence, I submit the teen's rheum very precisely and very emphatically telling us there was no reason to come back now that we'd done the antibiotics. Like, they were very obviously and very intentionally trying to defend themselves from a crazy Lyme bounce back. No interest in follow up. No interest in persistent symptoms...because of course, they can't exist unless medicine says so. Meanwhile, my teen is at the two year mark of fever and joint pain while already having an underlying neuromotor issue. Can you imagine how awesome dealing with medicine makes her feel?)

Someday when I have unlimited free time and a lot more energy, I'd love to go down the list of studies on preventative imaging. I haven't found one yet that makes me think there's merit to the false positive excuse. Maybe it's out there and I haven't read it yet...who knows. 

But out of grandparents and parents and me,  42% of us would have lived longer or had better outcomes with preventative imaging. It goes up to 57% if you include the grandparent with likely hyperaldosteronism (but they really needed blood work, imaging isn't the primary diagnostic route, however, imaging was how I knew my suddenly high blood pressure was hormonal because I knew there was an adrenal tumor so...).

I get that anomalies happen, but I'd like to see this idea of preventative imaging being total garbage more heavily reflected in my family. But it's not. Why is that? 

What if we asked the question for every MRI that found something actionable, whether an MRI earlier on would have improved the outcome (less meds, longer/better life, less surgery, lower costs) and then tallied the responses? That'd be hella interesting to see, don't you think? It'd be a very passive thing too. Program it in the medical records software, make it part of the SOP for every patient. Do it for a year, crunch the numbers, and I bet we'd find some new perspectives.

Anyway, between that appointment and taking the teen to a thing, plus even working a bit, I'm whatever level of knackered roadkill is at. On the positive side, this day had a lot of balance. I did a lot. I'm not sure it's an improvement in overall capacity, but I at least touched most aspects of my life and was productive so...yay me???