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.