You Eat It

 This post is probably entirely too much none-of-this-matters detail, but I have to tell you, I have been getting absolutely destroyed over here. This whole episode has been beyond bizarre. And I process things by writing. So here is a very dull blow by blow that is cathartic for me. 

So. I am supposed to be counting calories and macros for the nutritionist, but I can't remember my Googleplay password to pay through the nose for that ability in the app they want me to use.

I did learn I'd only eaten 800 calories today.

Honestly, I thought I was doing better than that. I attempted to eat more normally today. I had three meals. They were mostly yogurt and a kiwi, but still, it was three squares. Up from none.

I'm still picky about food, which is a problem as we'd just gone grocery shopping. I spent a lot of time throwing up things I was supposed to be eating for the next ten days. Now I can't look at them.

I'm over here handing out all this food to the rest of my family.

 You can have it. You eat it. No I don't want it. I especially don't want you to show it to me and make me look at it when you ask me if you can finish it. YES, FINISH IT.

The options that remain are...limited.

I've now been under 1000 calories for almost a week, with several days of nothing but fluids. The headache is killing me. Advil doesn't even touch it. 

Once I realized I'd grossly underestimated intake today, hubby was kind enough to make me some scrambled eggs. 

I wasn't hungry. I didn't want to eat. I felt like death. Absolute death.

But I made myself eat them. I'm not nauseated anymore. I need to eat and not be a dumbass.

The eggs hit me like a balm. The headache disappeared. Oh. Duh. I needed protein. Then I had a protein bar and in the end I got up to 1400 calories. 

Wow. I feel so much better. I hadn't realized how in the hole I was. 

Sorry. That is probably so dumb to you, but man, I'd really lost touch with the lack of food. Intellectually, I knew I was starving, but my stomach was mostly fine with it and I was eating more the last two days--honest.

I didn't expect to be in such a deep hole. I actually had thought I was already--had been in fact-- climbing out. Guess the deficit was bigger than I realized.

The UTI culture was clear which is interesting. The official medical theory is I passed a small kidney stone. Big enough to bitch slap me like Godzilla, but not big enough to matter much beyond that. It didn't hurt. I had a few minutes of pretty acute pain around the kidney the night before I started hurling and that was it. 

I'm sticking with the antibiotics because they are making a difference. I don't trust the science on this one. I want to be sure.

Hopefully today was the last of this drama. Please. Uncle. Take the win, universe and let this round end. You got me. If you're not going to outright kill me, please let up.

Also the exosome testing is in process. Surprise surprise. And fully paid for somehow. 

Well, I'm off to bed early. I'm exhausted. So freaking exhausted. This week has just been...wow.

Also, tomorrow we're having bacon and eggs and this weekend I'm going to grill some big fat steaks and absolutely stuff my face with protein. So I've got that going for me.

Dreaming

I dreamed someone else was puking. Then I woke up and pulled a Linda Blair. I guess the dream was trying to gently break the news. 

Liver super pissed. Puking, puking, puking. Then I started peeing blood. 

But while they see the blood, my body is refusing to reveal anything else so... They sent out for a culture in case it's a UTI, but didn't give me any antibiotics. I went home and found some old antibiotics from a previous thing that got switched to another antibiotic, and started those so now it doesn't hurt when I pee and I don't have to pee every two minutes anymore. I'm still queasy, liver feels hard, and I'm really really dragging, but I'll take it. Partial improvement is better than nothing.

Anyway, so that's how modern medicine works when you're not an easy diagnosis. Also no one had any curiosity about the liver acting up. I'm a little hmmm that two disparate things decided to pull a Thelma and Louise, but oh well. It'll either get better or I'll end up in the ER explaining why I'm taking expired antibiotics and no one will know what to do with me there either.

And then I had a nutritionist appointment which was very 'you need carbs' and 'don't drink soda all day' with a side of 'you don't lose weight because you're not eating but also you need a calorie deficit to lose weight.'

This kind of all different directions at once and assumptions I'm making basic mistakes is a classic sign I'm outpacing their models and that it's going to suck to be me while working with them. 

(And to be fair to the nutritionist, they were pleasant enough. They weren't horrible, but they weren't helpful either.)

So let's talk about eating. I have basically eaten nothing the last several days. I've barely stayed hydrated. I'm at a serious calorie deficit assuming we believe calories in calories out actually functions in my body, which I have my doubts and some evidence it probably doesn't. Between that and the queasiness, I'm only eating exactly what I want to eat and what I'm pretty sure won't hurt me and I'm damn grateful to be able to eat anything at all. 

I'm so hungry, I'm pushing the envelope hard today. Toast with butter and jam. Ten tortilla chips and this glorious locally made cheese which is probably why I'm feeling a bit urp right now--that was risky. Blueberries. And for dinner, ice cream because I'm not willing to risk a real meal.

I have zero fucks right now about nutrition. Calories I'm pretty sure I won't puke up or that my liver won't flip out over are the priority. I'm in survival mode. My system still has very clear preferences and limits. Ice cream yes. Protein no. Cheese...we'll decide after the fact and probably not in your favor. The nausea is not playing.

Actually, I may still puke, but I'm so hungry right now, I don't care.

I'll go back to my nutritionist disapproved low carb habits once I'm feeling less hurly. 

That said, I eat pretty much perfectly outside of my current situation. The liver tumors won't let me overeat. I'm very controlled and disciplined. I have never eaten so little for so long in my life...I can't emphasize enough how much the tumors make all the rules. I care about nutrition. I grow my own damn asparagus and am in the process of growing my own green beans (I cut back on what I planted due to having covid all of May so it's not super varied) and will have my first harvest of different berries shortly. 

In fact, it got to the point where I'd starved for so long and didn't even drop a size, that I tried Ozempic to see if that would help with my weight since starvation by tumor wasn't really doing anything. 

Yes, my system is violating all laws of thermodynamics. For real. I should be hella skinny by now, but my physiology didn't read the textbooks so...

I lost a little bit with Ozempic and have been stalled for the last 8 months--hence the nutritionist because what if I'm accidentally guzzling coke by the gallon and don't know that's bad? (Y'all...I might be dumb about food.) Part of the problem is everyone is terrified to increase the dose because of the tumors--but of course a nutritionist will fix that, right? 

Honestly, I don't care what the tumors do. Grow a pair. Let 'er rip. I'm not trying to be pretty, I'm too old for that. Weight loss largely (ha!) doesn't change anything in my health. I am simply trying to make sure I get better care by losing weight.

I spent literal decades with these tumors festering being told my gross anatomy was abnormal but also you're just just fat. The fat bias needs to go and I can only (maybe) control myself (except the weight doesn't want to goooo).

God forbid I be too fat for a transplant if I should need one.

Okay, that's a complicated statement because I remain undecided about a transplant (if it ever comes up, which it may not but I'm a planner so I think ahead). That's just even more doctors and even more medications and even more infection fuckery. That is a hard sell, guys. 

But I at least want the option to decide for myself. I don't want the decision made for me as in my experience, I'm the only one who seems to care and synthesize the context of my individual situation with any degree of insight. 

And I figure I owe it to my kid to get them to adulthood without the trauma of me dying. Once they are launched, I am not so sure I'm going to care anymore. 

Sad, unfortunate, but true.

At the End of a Rainbow, There Is Mud

On June 25, 2022, I began to teach my daughter how to protect herself from her government.

On June 26, 2022, I remember, I am a forced birth baby. I was conceived too early for Roe v.  Wade but close enough for it to chafe.

I was not planned.

My mom wanted to go to college, but lost that because of the pregnancy and never forgave me for it.

I mostly don't think about it. Because it doesn't have to define me. And yet, I've found I can't escape it.

My parents were teens and not ready. Some things they did okay. Other things, well, I was called down to the principals' office to talk to CPS about those. Once, I had to have surgery.

My one gift was the ability to see the dysfunction and choose differently. Very early on, I knew I didn't want whatever it was my parents were doing. I broke all the cycles. 

I was so aware, so competent that CPS didn't have to remove me. I'd already handled it. Either put me in foster care, I told my one parent, or let me move in with the other parent. I'm not staying here. I'm out. The other parent wasn't cake, but there was less abuse so I took it as a win.

Once I was eighteen, I never lived at home again. I got out. I moved on.

But my health is crap. In some circles, they would say because of the trauma. But I never thought of my life as trauma holding me back. I always focused on the strength that those difficult experiences gave me. I understood the assignment. My instinct is to leverage what I can control, which is why health and medicine are so annoying...they are very hard to influence.

I did better for myself than my parents ever could and because of that I didn't feel held back. I thought I could fly and not crash.

I have a good marriage. Hard sometimes, but good. We did the work and built beyond anything either of our parents ever had. I have an immediate family who thinks I'm funny and good and worthy. On the whole, when my health isn't fucking me too hard, I have a solid career where I always find a way to stand up for myself and come out ahead. 

I rode the rainbow, bitches. It was fabulous.

And yet, gravity always brings you down.

Gravelly, grave, gravity. 

As my parents age, their issues become more intractable, more vicious, and oddly, it's not as easy to escape their orbit as it was when I was young. Partly because I've been caught by surprise. Partly because they have developed addictions. 

It turns out, in the end, I have been too kind. I thought I had good boundaries, but the thing about aging when you're toxic as fuck is you start spewing even harder.  There are parents who spew dark, foul things to the moon and back. 

And so, all the resentments, all the bitterness, all the things they can't stomach to blame themselves for are projected onto me. I was the great interrupter. The thing that kept them from their dreams. The thing that has left them with less in their golden years.

The thing. Like a horror movie.

And yes, sometimes they say this to me. Not often. But I'm not assuming. I've been told.

To be fair, they also sometimes apologize. But that's a temporary moment of clarity. It never lasts. Their resentments were stewing long before I could fight back, before I could counter them. They're an entrenched default.

Their baggage all stews and brews and then spews at me as my health becomes more and more precarious. I sit here in the middle of a pandemic, knowing I'm going to get covid again and again likely because of them, and there is precious little benefit anymore to having done all that hard work. It did not set me up to deal with my parents in their final form during a pandemic. 

I don't have the health for it, for one. Not anymore. I never thought I would write or say this, but in a pandemic with my health with these people, I'm not sure I can survive them. 

I didn't know this final form even existed, for two. I had some dumbass optimism that they would maybe do the work. That perhaps they could evolve. Maybe, they could slay their demons.

That would be a no. They do not have the neuroplasticity. Maybe other aging parents do, but mine don't.  If anything, their traumas have gotten stronger...insatiable demons feasting on their souls and those of anyone who dares to get too close. 

I'm a dish on the damned buffet and I don't even understand how I got there. I said no. I refused to go. It doesn't matter.

I didn't even know that was a thing. Did you? Did everyone else know aging can magnify all the wrong things? That it's not always graceful or good? Guys, did I miss a memo?

My biggest failing was having too much optimism, I guess. The other, not breaking all contact sooner. And now, I think I'm stuck up to a point. 

All I can do is help my daughter never do that to any other baby, for both her sake and theirs.

I think she understands the assignment. If nothing else, her grandparents have served as a terrible warning. We have had limited contact her whole life, even though one does technically live with us at they moment, but believe it or not, I maintain good distance particularly between her and them. Unfortunately, they've just never been able to be good people for her.

But they think I owe them. That she owes them. 

They are mistaken.

I have tolerated them out of misguided optimism. Given them grace they never fucking earned. I don't know if I can completely unravel my mistake, but I will do my best to fix what I can.

I've inoculated my child as clearly and directly as I can. I've told her to never, ever do anything for my parents or even me for that matter if I ever dare try what's been done to me, or anyone who behaves like my parents have. That she does not owe us or anyone her happiness. That no one gets to speak to her like that or suck up her time and energy like that. 

Ever.

Walk away, I tell her. Run if you have to. Leave me behind and don't look back. 

This legacy of forced birth, of broken people forced into situations they can' t handle, doesn't belong to her. It ends with me. 

And for the first time I understand what Roe v. Wade meant. It meant never having to be me. It meant not having them. 

For all the babies like me to come...walk away. Run if you have to. They were forced to have you, but you don't have to keep them.  Don't make the mistake I did. Burn the fucking bridges to the ground.

And then the beat drops...

Oxygen drop today. 

For no reason.

Got woozy and felt really off. 

Checked pulse ox out of curiosity as something similar had happened to me a few days ago and... I don't know, I was just suspicious. 

93.

I'm barely functional. My head is whirling. I feel super weird.

I ate. I didn't eat a lot yesterday and hadn't eaten much today yet. Probably short some calories. So I got some food in me hoping that would help.

Nope.

I think I'm going to end up in bed all day.  The geneticist is trying to call me and I don't even feel capable of holding a conversation with anyone. Typing this is some Olympic level gymnastic feat. I've pushed them off to tomorrow in the hopes I'm synapsing better.

WTF Covid? Is this just how I oxygen now? Is this how it's going to be?

Holding On

 Holding on. Hanging in. Still tired af. Still lots of nerve and joint pain. Still pt-ing and stretching my ass off. Still getting some oxygen drops, although they aren't too severe...around 95. Trying, trying, trying.

And looking for a cut off point for medical appointments this year. I am hoping by September we can be done for a while. I would like a break. I'm ready to be done. A lot of it is basic stuff, nothing special. Maintaining relationships with different specialists. Setting up care to replace those I've lost. A little bit of extra cancer screening because of CHEK2. Nothing exciting but oh so very time consuming.

Things that are going well...

I am easing back into regular activities. I just tire out quickly. I had an interesting resurgence of the inappropriate fight or flight response during a really stressful doctor's appointment. It was way too hot, the office had moved and not told me leaving me scrambling to navigate a massive medical campus in order to arrive on time. Suddenly I was jumping and flinching at every little noise and my heart turned into a jackhammer. I haven't had that since the 2nd week of covid. Interesting to see it flare back to life to kick my ass due to stress. I was useless the rest of the day after that--to be fair the stupid appointment took five hours from start to finish, there wasn't much day left anyway. (Also this can just go away already. K? Thx. Byeeee.)

But I am overall more active. So that's moving in the right direction.

My mental capacity is good though. Wrote ~1/2 a book in two days. My hands are about to fall off, but the productivity is awesome. Sometimes stories show up and just need me to type. This was one of those times. I love it because the story is usually pretty clean when this happens. It's like it marinates in my subconscious and then surfaces all at once, almost fully formed.

I just don't know what goes on in the other half of the book yet lol. I have vague ideas though. It'll work out. Books that start like loose fire hoses, tend to keep spewing even if they sputter here and there.

Got the teen volunteering with the city so they've got something to do this summer. They're also going to help out an antique dealer with an eye to maybe doing a paid internship.

If you recall, they have their health stuff too. I am trying to keep them oriented with regards to illness only adds work, not removes it, you still have to build a life, do the work, move forward and also take extra special care of yourself. No one is coming to save you. Illness isn't a fairytale. It's a clusterfuck and you still have to pay taxes.

And then I attempt to balance that with whatever accommodations they need. The tricky part is teens are pretty emo (our exchange students were a master class in this and one will forever hate me because I wouldn't let them get into cars with kids I didn't know) and I've noticed this generation likes to wallow in dysfunction and hyperfocus on illness as a status symbol. It's a huge part of online culture for teens. We don't want to feed that, but we don't want to be giant dicks either.

So that's a fun new parenting game. Are they channeling the internets or do they actually need some help? If you get it wrong, your kid hates you forever. No pressure!

We had a good consult with Infectious Diseases and there's a treatment plan coming. I am not sure I agree with the diagnosis but it doesn't matter. The treatment is going to be pretty one size fits most things anyway. I think the kiddo is betwixt and between. Not sick enough to get a good diagnosis, not healthy enough to sail off into the sunset.

The fever has been going up, though. I am guessing it'll hit 101 soon. At that point I wonder what they will think. They've made a cognitive error imo in the decision tree. They forgot the fever has been going up. They've been telling us the set point changed. Except...it's not set. Not at all.

The kiddo was rather upset with the diagnosis, they also felt it missed the mark, and I told them 'Your doctor is really sincere and really trying so I don't know that we benefit from jumping to someone else right now. Your job now is to do everything they ask of you so that when you're back in their office and the fever is going up and nothing has improved, they know you did the work and they'll start thinking about what they might have missed. And we'll re-evaluate too and see if there's something else we need to do on our end.'

And there's something going on with their heart. I'm guessing it'll be benign? Maybe Covid enhanced dysautonomia...although the cardiologist says the data history predates our covid infections. So I'm not totally sure just yet. We have more testing to do. More serious stuff would have been serious by now, so I'm fairly optimistic about it. Or naive. Time will tell.

Information Isn't an Answer

The first round of genetic testing came back. It was...interesting.

First, the geneticist has lost all interest in me. We went from 'we're gonna do this and then we're gonna do exosome testing and then we even have thoughts on what to do after that' to 'meh, you can do exosome testing if you wanna'. Always fun to realize you were just a physician's bright new shiny and now the shiny's gone and you're of no use to them. The light just goes out of their eyes... and I realize I was just a novelty. A plaything. And I've failed to satisfy.

Some things did come back. It wasn't a total loss. My parent will be getting tested. I'm supposed to have some additional testing, but no one has followed up with me on it yet.

There were some things that were just plain confusing.

And it looks like they didn't test all the genes for the hepatic adenomatosis. Just the ones associated with glycogen storage disease which isn't everything. Sigh. There I go again, assuming a physician will actually be a topic expert and nooope. So I have to work up the energy to go back and be like 'yo, did you hear about this gene and can we test it?' which has a 50/50 shot of being well received, or marking me forevermore as the most annoying patient ever. God. The medical minefield is so exhausting. I always have to be on top of all the things and I never know what will blow up in my face. 

No one's education or expertise is as good as a patient's own self interest, but woe to the person who tells the doctor that.

Anyway...I'm a recessive carrier for GSD 7, which isn't supposed to mean anything, but in the patient world, we have folks who are symptomatic carriers who compare notes. It'll be interesting to see if science ever connects the missing dots between data and patient experience. I'm not sure, at my age, if I get to live to see it though. 

I came back positive for CHEK2 which is interesting because it's more common than BRCA, which I think most everyone has heard of, but it gets no press. It's big enough for patient communities to spring up, but it's far from common knowledge when it probably should be.  The other interesting thing is I have very little cancer history in my family, so it's kind of wild to somehow have a genetic increased risk of cancer.

It makes no sense.

There's something going on with the hyperaldosteronism which is why my parent is being tested. I'm confused on why I didn't get any genetic information on that. Did it not pop on testing and we're proceeding based on family history? I left the appointment and was like, wait a minute. One of those head smack things you think to ask about well after the fact.

None of the tumorgenic stuff they looked for popped and I was told it's still hard to get reliable testing for some things, that they still can't see all of the gene. So all the tumors and cysts are still one big giant question mark. Still. Jesus. That was a surprise to me. I thought genetics was further along than this. Guess not. All this effort and still no answers. Suckage.

There's one specific thing that fits with my family history that can be established with clinical criteria, though. I don't know if I have it, but I want to be sure since it has some risk if left to hide. So I'll be eventually pursing things from that angle instead of genetic testing.

I will proceed with exosome testing at some point too, despite the geneticist's newly minted total lack of enthusiasm. I'm waiting for my parent's testing and then the follow up testing they wanted me to do and then I'll start getting the exosome stuff going.

I'm still recovering from Covid. My heart rate is normalizing. I'm getting an average resting heart rate in the 70s and the spikes aren't much more than 20 beats over baseline. Oxygen is wobbling but at a higher vibration (to sound New Agey). Instead of 93-95, my O2 now vascillates between 95-97 which is progress. 

I still get very light headed and feel like I'm going to pass out with activity...I do a lot of leaning or scrambling to sit until my vision clears. I had this before Covid but to a much lesser, much more mild degree and it makes doing anything an interesting Olympic event. This is as close as I've ever gotten to passing out.

I am also tired. So. Very. Tired. I hear this is common. I'm trying to roll with it and chill, but I'm kind of tired of the treadmill that is illness recovery in this flesh bag. I don't have the heart for it anymore. It almost feels pointless given that it's just a matter of time before people in my household re-infect me.

Covid is also still eating my nerves and joints. It's not that the pain is bad--during the day I deal with it just fine--it's that it disrupts my sleep. My brain thinks I'm being attacked, sounds the alarm, and I am woken up to defend myself against a non-existent boogeyman over and over and over again. 

I got a Fitbit to track my recovery, and I'm waking up 15-20 times a night. I don't always remember them all, but when I wake up in the morning, my overall impression of my night is that I was in pain the whole time. It's not pleasant or restful sleep. 

I'm doing stretches, PT exercises, massage etc, etc, etc... I like sleep so I'm really hustling for it, but I can't seem to win on this.

I'm tired, man. So tired.

A Chance to Cut Is a Chance to Ghost

 

There's a Reddit thread where physicians are pretending to rate patients  like patients rate doctors, and this post from an alleged neurosurgeon caught my eye, particularly in light of the recent shooting in Tulsa.

(If you want to be really demoralized, go find the thread and see the miles of physicians making fun of patients who can't pronounce their medications. They want us ignorant. They mock us for doing any research. You'd think not being able to pronounce weird names of medications would be a good thing. Patients are just never dumb or smart enough for doctors. We can't win.)

This physician encapsulates a lot of what I experience with surgeons. Once they cut you, you no longer exist. If you have an issue, you're a problem patient. The best patient is an invisible patient.

My first reaction to that shooting was to wonder how much had been explained to the patient. Did they even know how bad recovery was going to be? I find I am often underprepared for the pain of recovery, intentionally so in my opinion, by the surgeon. After my liver resection, I just assume recovery is going to be absolute agony and am pleasantly surprised if it's not.

Obviously the shooter's approach to problem solving was unacceptable. I'm not suggesting it was, but when I contemplate a root cause, I have some questions.

In my experience, surgeons will promise you the moon to get you into surgery and then disappear never to be seen again after the surgery. They don't care about pain. They don't want to know about your problems. They're did their job which means you're fine. The patient is not allowed to have any experience outside the surgeon's expertise and authority.

I have a vivid memory of the liver transplant surgeon visiting me after surgery along with someone who was never introduced to me, but I sensed that it was a tour of some kind and I was on display. He came to my bedside, I can't remember what he was talking about, but it wasn't addressed to me. When I tried to ask him a question about my surgery, he sternly cut me off and told me that wasn't his job and then left.

I'd never been formally introduced to any other surgeon and told they were in charge. He'd been in the operating room when I was wheeled in. He'd also been the only one who ever spoke to me before surgery, the physician I made appointments with. WTF?

When I had my spine surgery, I was not warned that nerves really don't like to be touched and would be very painful as part of the normal recovery process.  At one point, I could barely walk and when I brought that up at my follow-up appointment with the neurosurgeon I was given the brush off. No attempt was made to try and improve my functionality (which was a real fall hazard) or comfort. 

They'd cut me and were very clearly DONE with me. I was dismissed. I went home and muddled through on my own, making up my own regimen of pain management with whatever I had on hand since no one else would. (In the future, I've resolved to just get some pot so I can control pain on my own...just have to test it to see if it even works since I get so little relief from opiates anyway.)

I hope I'm never as desperate as that shooter. I'm really thankful my nerve pain largely expresses as burning and is generally tolerable. Outside of surgery making everything way worse, the main problem for me was how it interrupted my sleep and the loss of function. My brain felt a need to constantly alert me to the burning or numbness in a loop. Like a malfunctioning alarm that can't be turned off. Even the tripping and falling wasn't as big of a problem as the impact on sleep.

No one should go on a shooting spree, but given the circumstances on this latest tragedy, I do wonder whether the patient was adequately prepared for how hard the recovery can be after spine surgery and whether better communication and more robust care would have made a difference. It's a significant surgery, with a lot of pain. That someone was so hopeless just days after surgery seems to signal that perhaps the patient didn't have the information they needed to have realistic expectations.

I see such a lack of communication and a lot of ducking of responsibility among surgeons I've had to work with that it has to be systemic. I can't be that unlucky. It seems they've created an echo chamber that justifies and rationalizes all their behavior as lawful good, and yet somehow they were also able to drive a patient over the cliff. 

And clearly this guy wasn't in a good place and quite possibly something else would've triggered him, but the fact is it was this surgery that was the final straw. I don't want to victim blame, I'm not trying to do that, but I also don't want to ignore that there are systemic communication and care issues that can push desperate people to do desperate things. And if we continue to let them fester, we will continue to reap what we're currently sowing.

A terrible tragedy all around.

Ghosting 84

 My oxygen plunged to 84 today and it's struggling to get back to the more normal 95-96, which is a decline from my precovid 97-98, which was a decline from my pre 2010 virus level of 99-100.

It didn't stay at 84 for long, but it took a chunk out of me. I'm tired and dizzy and loopy. My chest hurts.

No one cares, though. Trust me, I know. If anyone reads this, you don't care. I get it. It's not happening to you, right? You don't have to figure out how to drive to the dentist appointment later today while your head is spinning like a fucking whirly gig.

At least I seem to be over the most acute phase of covid. I'm trying to get back to regular life with varying levels of success. Today, covid wins.

I especially enjoy the part where the lone person (my live-in parent) in my household still refusing to take any precautions is snarky and butthurt that I'm not doing the dishes.  Like, what the fuck did you think was going to happen if I got covid?

I haven't cleaned anything in almost 4 weeks. Like, it's not happening. I'd like to do all the usual things, but I can't right now. At the moment, all I'm doing is keeping various medical appointments for the teen and me and trying to keep up at work.

And here's the kicker, the insult to add injury, my pulmonologist of 16 years would have given me Paxlovid, BUT didn't bother to check their messages during their last two weeks in the office.

Yes, that's right, my pulmo is gone. Just like that. All the hugs and giving me their kid's phone numbers (for work things) was just a psy op to make me think someone had my back. They didn't. They flaked when it counted. 16 years and thanks for nothing.

And yes, that's right, I could have had Paxlovid and maybe avoided the long ass recovery I'm battling now. It was just pure bureaucracy and laziness. Can you imagine how many people this happens to? And the system doesn't capture their poor outcomes and connect them to these failures of attention, of effort, of common decency.

There was no place else that was going to give me Paxlovid. Not my primary. Not CVS. No one. I had no back up position. I tried. I tried so hard despite being so sick. But I can't make the world do what I want. I have no power.

This sucks. It really sucks. I always try to be a 'good' patient. I follow directions. I do what I'm told. I disclose when I go off the map. I largely keep myself out of the ER for asthma (only 1 ER visit in the last 11 years). I forge what I think are good relationships.

And none of it can fucking save me.

How does someone like me survive a pandemic? I don't know that I do.

I only stayed out of the hospital because of my meds. The vaccines didn't make the difference, the prednisone, albuterol, and pulmicort did. People like me...we need more science faster. We need access to resources without excessive barriers.

But we're just ghosted, what we need isn't there, much like my oxygen these days.