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.