The Killer Is Inside the House

 Day 20. I'm still sick. Not getting better. Not getting worse. There's no help for me apparently anywhere in the world of medicine. 

Oxygen is good, but I can't breathe. I don't need antibiotics based on my beyond extensive experience with respiratory infections. I've been checked for heart attack and blood clots. All good.

But I can't breathe or function anyway. I feel very swollen. Like there's inflammation in the smaller airways, but it's not enough to tip me over into anything medicine will care about.  I'm just biding my time until I get worse or qualify as long haul and can maybe go to a long covid clinic. 

Kiddo is still sick but not nearly as affected. I'm sure whatever is causing the fever of unspecified origin isn't helping.

The key to surviving a pandemic is to avoid infection until there's a cure. We are not quite there. The vaccines do not work as well as society (or I for that matter) needs them to and do not prevent the virus from continuing to mutate. The antivirals are not widely available; doctors are leery, they can't be used for many patients. The monoclonal antibody infusions that might help are nowhere to be found.

It would have been better for us to get sick during the Delta wave or the first Omicron wave. We would've been able to access infusions. Resources have disappeared since then.

So the other key to surviving a pandemic is to avoid infection when there's not much help for you, whether that be overwhelmed hospitals or lack of easy access to effective treatments. I got fooled by the vaccines. I thought we were good when in reality the vaccines are not as good as the hype.

I don't know what's going to happen to either me or the kiddo. I have some hope for the kiddo. I have to or else I wouldn't be able to function. For myself...I'm not sure I survive this pandemic. Not as things stand now.

I live in a multigenerational household. Two other adults in addition to myself. They are both tired. Both unwilling to take the necessary precautions. They're done. They're no longer able to care beyond how much they are tired of this pandemic. 

Meaning it's only a matter of time before I have to fight round two. I don't know how many times I can get Covid and beat it. It would appear I'm going to find out.

Ironically, the weakest links in my household appear to be the ones who get the mildest cases. Sigh.

You would be correct in thinking I am less than thrilled about this. It turns out I am unusually constant, atypically vigilant. I could mask and isolate until the end of time, but my wagon is hitched to people who are psychologically unable to do that.

Yet another key to surviving a pandemic is endurance. You're only as safe as your household's tolerance for doing what it takes to be safe. Once one person cracks, you all get infected and the chips fall where they may.

Sooo... If medicine gets better antivirals and I can actually access them and/or if new vaccines with better efficacy come out...maybe then I'm good. But until then, all I have are deadly lottery tickets.

Sorry if that's grim. It just feels realistic to me at this point. Covid is eating me alive right now. There's no way I can win this war.

Distractions and Biblical Hoes in the House of God

I still might be dead. I wrote this because I was on a roll after my last post and I'm in that miserable phase where I can't focus on much and can't do much because my lungs can't keep up unless I'm perfectly sedentary. Blogging is a good way to distract myself when I'm tired of reading.

And what a coinkydink, this post is actually all about the reading I've been doing.

Fair warning: I'm not fully oxygenated and I'm on steroids. This could be a hot mess.

So in my quest to understand what the fuck is medicine's problem, I've been going through various books on the topic. Some are interesting, some are weird. Let me tell you all about it...

How Doctors Think by Jerome Groopman is excellent. I now realize I have blogged about and experienced a lot of the biases and cognitive errors doctors have made with my health, but I didn't connect that there was a framework for categorizing them. I didn't realize someone had named them all. 

I really should have known, but I guess I had my own cognitive error going. I do have books on mental frameworks in a similar vein and I do use them in my work. I just failed to expand and extrapolate beyond my field. 

Let that be a reminder to always question the premise and examine your assumptions.

Unfortunately, there seem to be no global fixes in the works. We all know there's a problem, but no one seems to know what to do about it. AI or big data isn't yielding much help with this either, although perhaps that has changed in the last few years...I need to check to see what the current status is. 

I'd also suggest that some of the biases and ways of thinking are by design to serve a profit driven agenda. Even going so far as impacting textbooks, papers, and studies. Essentially, the Dark Money of medicine. I have some particular examples I'd like to maybe blog about at some point...I just need time to do put all my research together.

Then I picked up Diagnosis by Lisa Sanders which seems to be a compilation of newspaper columns about difficult diagnoses. She is quick to tell us that doctors get it right 95% of the time (OMG lol lol lol LMFAO) and then proceeds to spend the rest of the book discussing all the cases the doctors got wrong and the people they killed/almost killed as a result.

I'd like to see the study that says doctors are that good. I bet I can find some flaws. I'll have to go through her sources and dig it up. Has the number of years and doctors it takes to get diagnosed with basic things like thyroid issues decreased? I bet not.

So the book is meh at best. It's a very idealized look at medicine. Where all the consults possible are made and everyone is all too willing loop in a more experienced doctor, which I've never seen happen in any of my interactions with medicine despite having some pretty rare shit.

It's interesting that even an idealized look at medicine can't escape stories where the system harms patients.

Further, most of the case studies don't give you enough information to allow you to figure out what's happening, so there's no mystery to it. You have to read until she finally gives you the diagnostic clue that made the diagnosis. But without those clues, the cases are boring because the whole time you know she's purposely holding back information. You're reading pages and pages of just noise with no payoff.

I'm thinking it probably worked better as a newspaper column.

And even as she methodically catalogs all the ways doctors fail their patients, the book somehow reads very 'there there, doctors are good, don't worry your little head about a thing, we're the grown ups here.' Patronizing ick. Very weird vibe.

But it's an easy read. I'm covid chilling and reading it to distract myself. 

There are some interesting nuggets. It's not a total waste of time. I didn't know that cancer could cause depression, for example. That was eye opening. 

And did you know? You can just drive 600 miles to Mayo's emergency room and skip making any appointments. That's kind of ballsy, though. I also roughly knew the diagnosis on that case because I once had a version of it myself.

The patient history: Systemic immunosuppressants with severe rash starting in the hands and spreading. 

Well, I had a fungal infection in my cuticles after being on prednisone for so long back before the advent of modern asthma inhalers. It was very difficult and painful to get rid of. Luckily it didn't get too serious. 

I also occasionally get intractably sick enough that I've been assessed for whacky systemic fungal infections. So far, that's always negative. Thankfully. So on the patient end of medicine, I know some of the pattern here.

The second I saw immunosuppressant in the history and the fact her hands had a weird rash, I just knew it was fucked up fungal something that had gone rogue. Fungal stuff is stubborn as hell.

My question after reading that particular case was how was Mayo--600 miles away for the patient--the only place that could figure it out? Seems like something any physician worth their salt should be able to logically work through. 

All I could think as I read was, 'God. I hope her doctor didn't bankrupt her with that 600 mile drive to Mayo advice.' Yes. That was all her doctor could think of, to send her way way waaaay out of network. She was at Mayo for a month. She will probably never be done paying that bill. I guess her doctor was the rare one who didn't have any doctor friends to consult with.

There's also a case where the patient lied to manage the system that I thought was a good illustration of how patients are left with no good choices all too often. 

For me, anymore, medicine is like a video game quest. I'm trying to find the treasure and I'll smash all the things, push all the buttons looking for it because there's no map, everything you're told to do can easily be a dead end, being on the right path means nothing. You just never know where actual help is going to be, so look everywhere.

I am also trying to read House of God, but it's very dated and quite sexist with some really gross sexual assault. Not to mention racist and ego reinforcing (doctors are gods) and all its wisdom predates the advent of the MRI among other medical advances. It's really kind of amazing to me that it's still viewed as relevant. All the doctors still seem to read it (which makes me wonder how much content like that subconsciously reinforces bias) so I thought why the hell not. 

I'm not sure if I'll finish it. It's a bit of a slog. I'm having trouble understanding why this satire is such a cultural touchstone for physicians. I found it pretty dull and pathetic. And the ick factor when I realized I've seen doctors write eroticizations of their female patients on blogs inspired by this slop in recent times...Off. The. Charts. Ew.  

I'm not sure everyone understands Roy isn't a hero.

And just in general I'm still kind of huh on why anyone wants to read about some dick being a dick in a hospital setting. They say you have to read it after you've worked in a hospital. Unfortunately, I don't have that option.

God. It reminds me of the We Are Bros, Bros that were on the transplant team for my hepatic resection. They did actually act exactly like people who somehow wanted to reflect The House of God into the world. Huh. 

The book is also a very mercenary, blunt discussion of how hospital dynamics work. I really hope there's some effort in medicine to not just be punting patients as described in the book. Where I'm at now, the story is basically telling doctors to dump patients on some other specialty as much as possible, like a game of hot potato.

Patients are called GOMERs (Get Out of My ER) in The House of God which...funny story. I started reading this on a Sunday and happened to catch the last of the TV preacher as I waited for the news. Believe it or not, their topic was the story of Gomer in the bible. So I'm reading House of God and learning about the medical Gomer and then randomly catch this sermon snippet about the biblical Gomer.

What are the odds?

The biblical Gomer was an Old Testament 'whore' and God kept making her husband bail her out of jail after 'whoring' around and telling her husband to remain faithful. The whole story is creepy as fuck. There are consent issues all the way through and was Gomer really a 'whore'? Is this story really an example of God's love for us like the preacher believed? I'm not so sure. 

Although I guess making sure fundies know God loves sex workers too is probably a Good Thing. Love all, serve all, right? Too many fundies forget that. Do doctors also forget?

But the point is, all the folks in medicine using Gomer because of House of God probably don't know they are also taking a 'whore's' name in vain.

And I can see why God did a rebrand with Jesus. If Gomer's story is any indication, the Old Testament was super codependent and dysfunctional.

Oh. Wait. So is medicine. Ha.

All right. I'm off. I hope I survive to bitch about medicine another day. Peace.

I Had a Good Run

 Welp. Covid positive. I managed to avoid it for 2+ years, but my luck ran out.

Hubby gave it to me. 

His masking isn't always great. He's been at work this whole time, and now that everyone's vaccinated, he's been getting cocky. I've talked to him about it, but the reality is the masks are uncomfortable and people are tired, even smart people who should know better. And his coworkers are a bunch of anti-vax Trump nuts so the peer pressure is intense.

Asi es la vida. C'est la vie. You can run from a pandemic, but you can't hide.

I did the best I could.

Kiddo is getting sick now too.

So of course, I start making calls trying to get an antiviral. Primary says they can only prescribe Molnupiravir, but doesn't like it, so won't order it. I mean, I read the medical literature so I get the concern with Molnupiravir but I'M HIGH RISK. Don't leave me high and dry. 

Since I'm not an idiot, I know better than to assume one doctor will help me. You have to work all the angles to keep medicine from killing ya. I called everyone who is supposed to care if I keep breathing. I have messages into the pulmonologist and looped into the FDA test-to-treat program with a CVS clinic, which was an absolute mess by the way ( more on that in a second).

I'm already on prednisone and very short of breath. I can barely talk, so the phone calls begging for medication are extra fun.

You can always count on medicine to force you to run a marathon when you're deathly ill. God forbid anyone help you.

The CVS Minute Clinic was an absolute disaster. The first red flag was the tech (or nurse, not sure which) struggled to read the phonetic uncomplicated names of my medications and had me spell all my diagnoses. I've worked with illiterate adults and I noticed it because it reminded me a lot of the folks I've helped learn to read. My employer once hired an illiterate admin who was commendably slick at covering the fact they couldn't read. As their assigned manager, I had the fun of working with HR on what to do about it. So my pattern recognition got pinged. It was...odd.

But surely it was just a one off. A bad moment. Sometimes people can't spell. 

Maybe.

But it was a harbinger of more fuckery to come.

The tech then flatly told me I wasn't going to get anything from the care providers before the provider even saw me and said a bunch of bizarre shit that made no sense and went against all the protocols for antivirals. 

I was very confused, and when I asked questions trying to clarify all her adamant finger wagging declarations, she got mad. She walked out of the room in a huff, running off like a good little mean girl to trash me to the care provider.

That was fun. Always a delightful experience dealing with power tripping psychos when you're sick. 

The provider did, in fact, prescribe Molnupiravir as I do, in fact, have Covid, and I do, in fact, meet the motherflucking criteria. I made it clear that their tech (or nurse, again not sure which) was insane in the hopes they would be able to address it. Because it was beyond inappropriate.

I think what she wanted to say was that the antivirals aren't safe to use in some cases and that not everyone qualifies and I would have to be evaluated to see if they were an option for me, so just be aware there's no guarantee. 

That would have been fine. 

Instead I got a bunch of weirdness beyond her scope. 'Your specialist should prescribe this, not us, the providers here won't give it to you, we don't have to treat anything, you don't qualify, you can't take this with your medical history, you're just here for the test, we're not giving any meds.' 

From. A. Med. Tech. Slash. Maybe. A. Nurse.

Who. Can't. Read. Fluently.

It was just unprofessional. I was so confused and any attempt I made to clarify what the fuck was going on just made her more aggressive. I didn't register that she was likely nuts until well after the whole thing went down. Classic case of hindsight is 20/20. I'm not quick right now. I'm tired and my breathing sucks. It was dumb to let her suck me into her dysfunction, but I'm not 100%. 

Anyway, if I never post again, I probably died. It was nice knowing ya. 

Ha. As I was writing this, primary called me back. They seem to be reconsidering.  For whatever reason, they're more concerned now. I sound absolutely terrible (it reminds me of the time my throat tried to swell shut with strep, I'm barely audible) and I emphasized all my medical fuckery as best I could on the last call, so maybe the nurse said something persuasive. I don't know.

They don't like the Molnupiravir and I get it, but like, rock meet hard place. What am I supposed to do? End up in the hospital? Is that a better outcome? I can wait a bit to take it, see if I turn the corner on my own. All my options are kind of sucky here.  

At least I have the Molnupiravir now, which was stage one of this quest. Now stage two. Do I take it or not? I don't know. I'm on day 3 of prednisone and can't tell if I'm turning the corner so... I don't know.

I'm properly spooked by all the hassle, though. I've lost trust. I no longer have faith.

Aaaand ha #2...apparently a report came out today saying an expert panel ruled that Molnupiravir doesn't even work.  Which we all kind of already know, right? It's only about 30% effective to begin with. But I guess all that drama trauma is probably for nothing even more so than it was before. Sigh.

 Maybe pulmo will get back to me and have some ideas. I'm hearing from other patients that sometimes their specialists are still having them take Paxlovid even if it's contraindicated due to drug interactions.

The irony with Paxlovid is I'm told it can cause adrenal suppression when steroids are on board, which is why it's contraindicated for me. But if I end up on steroids for weeks and weeks because this spins out of control, I'll probably suppress anyways. Like, I don't have a win here. I'm just sort of doomed.

I can only hope it all ends well on its own. The only outcome I can't directly influence. It's up to my bizarro pile o' cells.

I'm just trying to be proactive, you know? I wish it wasn't such a gauntlet. This isn't turnkey. I've got med techs/nurses insisting they don't have to follow any protocols on this. Primary who doesn't feel the antivirals are safe. Specialists who aren't calling me back. I'm sick and somehow supposed to make sense of all this on my own.

Am I doing rare disease and high risk wrong somehow? I don't understand why I'm so out in the cold on this. 

Up Down Up Down Round and Round

Lungs are tanking. I'm dragging because breathing is sucking me dry, but other than that, I don't feel terrible. I really don't. It's just the lungs being giant dick-taints (That's a new word. I just made it up. I like it.). 

I pant pant pant. Why why why. Ugh ugh ugh.  I took some prednisone this morning on top of Pulmicort. I'm trying, man.

We saw Infectious Diseases a few weeks ago for a second opinion on the kiddo. That's really why I'm here. To process that. Because it's been on my mind a lot.

No one wants to hear about your sick kid; the six weeks of fever log we've kept because the rheum told us to, the joint pain and swelling that is somehow never clinically relevant, the constant angst of where the line is on the level of activity, the diagnostic limbo, trying to make life work, be a good parent when there's a fever every day. You just don't talk about these things even if they consume your life.

And we don't have a good diagnosis yet, which means there are no patient communities I can seek advice in, not without feeling like a poser or risking a mistake.

And the Lyme groups are just insane. I did poke at them and then quickly exited when I saw the phrases adrenal fatigue and medical medium and ozone IV.

The only woo I'm interested in is woo that's had some good clinical studies. Beyond that, no, just no. 

So we're a bit homeless over here at the moment.

Anyway, this ID Doc was the bomb. Very knowledgeable. More proactive than anyone else to date. 

We finally got bloodwork ordered for what they called the 'full fever of unknown origin workup.' I have no idea if that's an actual thing throughout all of medicine or just what this doc does, but I'm here for it either way. I'm always a fan of hard data.

We're doing another month of doxycycline in case this is some kind of Lyme rebound. The thinking being maybe the first round didn't get it all. There's mention of a second round of antibiotics in the medical literature so I was aware of it, and it seems like a reasonable thing to try. Doc told us it's 1-2% of patients and very rare. (If only they knew how much experience we have with the R word...What? My kid an outlier like their momma? Shocker!)

They referred us to their pain clinic for the joint pain. We will also be looped into the long haul covid clinic potentially for chronic fatigue syndrome. Apparently, that's no longer such a fringe woo woo diagnosis. Doc said since SARs and now Covid, the thinking has changed, and they send everyone to the long haul clinic in their system for anything chronic fatigue.

We've got blood work to do. They're starting to look more deeply at different things.

We will potentially see immunology depending on where things are after the doxy.

I don't know what's going to shake out. I have no idea if this is Lyme or Chronic Fatigue or a juvenile arthritis of some kind or something else. I don't think the doctors know either. But the relief that we're finally starting to collect concrete data in an effort to sort it out is immense. Even just ruling things out is helpful.

I've prepared my teen that nothing may show up. That they may have to wait for science or symptoms to evolve. That this can be a bitch of a process. But if we're lucky, we'll get an easy win. 

I hope. I hope. I hope. 

Baby Cobra Bitch

 You know, I'm not here to be cute. I'm no longer able to try to inspire quality medical care by being sweet and nice and cute. I've been through too much. Medicine has done me dirty. I'm salty af.

I notice a lot of women try to be soooo nice and positive and all things love and light while dealing with chronic and/or rare disease.

It's a mask. We save puppies, right? We coo over babies. Cute gets help. Cute has appeal. 

No one rescues a cobra. Baby or not.

Anger, boundaries, demanding quality...that's just a bitch, and bitches don't get shit.

But I'm a bitch. A baby cobra bitch.

I'd rather be cute, but cute didn't get me diagnosed. Cute only causes harm.

I'll be respectful if you're respectful and probably even if you're not, but do NOT come at me with your gatekeeping medicine bullshit. I don't play that anymore. I know you're only as smart as your bias, only as effective as your pattern recognition, which is useless for me since most doctors will never see more than one patient like me and no one researches shit on my crap. 

There is no knowledge base for me. My crap isn't taught widely. Physicians hear about it in passing (maybe),  learn it (maybe) for the test, and quickly forget it.

So why is the default of medicine to cause me more harm?

Why isn't it test, image, KNOW?

That's my mantra now. Get on board or get out. Provide data. Data is the roadmap, not what you or I think. I WILL do the testing privately if I have to. I will complain. I will get second, third, fourth opinions. Because I have to live with what happens when all the doctors are dipshits.

I'm not here for what you think. I'm here for what we can empirically prove is real. You cannot guess on things you've never seen. You must default to hard data.

My Weird Stardust

Sometimes the universe is wild and wonderful. In the midst of all the medical shit and drama, I am blessed with a neighbor who randomly gives me art. Art that I love. Original, signed art. Fancy art. 

I have no idea why the universe saw fit to create this dynamic in my life, but he just shows up at random intervals and hands it over. He's slowly purging what his late wife collected and is just happy to give it a good home. So on Mother's Day, he was at my door, original art in hand.

Sometimes I get the good stuff.

As for Mother's Day...I either talked too much, or despite all our precautions, I picked up a bug. I can barely talk, my throat is road rash sore. I'm just drinking all the hot tea and taking it easy. I feel okay overall. A touch of asthma but nothing to where I don't want to go outside and weed.

Yes, weed. My iris patch is a hot mess. It's crying for help. And there are bugs everywhere. The asparagus has beetles and I saw a nasty looking bug in the strawberry beds. Last night, an absolutely massive bee spewed out of the hose faucet scaring the bejeesus out of me. And it didn't even come out right away! It came out after half the bucket was full...so it was DEEP in there. Do bees swim??? It must've been underwater!

If this is what a 60% decline in insect population looks like (so they say) I'm not sure I want to see what 100% population is like! 

But dealing with all that is now the big goal. May is our designated yard work month. So we are trying to get the garden, the flowers, our pest control, and our little pool set up.

The pool...kind of a funny story. I was having increasing issues with my hip and had dislocated my knee trying to deal with it. I didn't yet know the root cause was a cyst on my spine, but I was panicking because this body requires exercise to have even a shot at health and I was really struggling physically. I knew I wasn't going to be able to walk and do a lot. A pool was the only way I could think to stay active, and with COVID I didn't want to go to a public pool.

So I bought one.

In December. 

At 2 a.m. because it was 50% off.

With all the predatory arbitrage out there, that was the only way I could afford it. Indeed, after I bought it, the price went up a thousand dollars. By spring, I could have flipped it for about $4k in profit...an option we seriously considered.

I made it a Christmas present and gave everyone pool test strips because no way was I wrapping pallets or dragging them under the tree. Several people mistook them for pregnancy tests and thought I was announcing a baby (OMG). So that was a whole lot of fast explaining lol. They were like, 'it's a...pool...not a baby? Are you sure?'

And, me being me, it turned out that a pool made everything worse. After swimming, I would lose my reflexes and stumble around unable to lift my feet. Weightlessness destabilized my spine for some reason. Thankfully, while the surgery didn't fix everything, it managed to fix that.

And at least I have a neighbor who gives me art.

My life is weird, but I'll take all the good I can get.

No Answers, Only Time and Suspicion

Can't sleep. 

I'm pretty sure I know at least one thing genetic testing will show. I've discovered I probably actually have macrocephaly. I got curious and read up on things and then measured thinking surely I don't. Welp. It seems like I do. I'm somehow perfectly proportional so it doesn't stand out. 

Not even the geneticist measured, although they did ask. I, of course, said no lol. Welp. I think I was wrong.

I found this right before bed and my brain has been chewing on it ever since. So no sleep.

I'm trying not to get ahead of myself and give the testing time, but there's so much obvious alignment with a particular thing--the moles, the growths, the tumors, the family history--it's difficult to be patient. 

I also found the pre-eminent geneticist for what I think this is and I can see them. So that's a possibility. I like all my current specialists, we have good working relationships, and I actually have a competent primary for once. I am loathe to leave them, but I might have to.

I am still properly terrified of my liver transplant surgeon. If more liver surgery is in the cards, I am going to need to force myself out of my comfort zone anyway. I don't think I should work with them again. 

One thing I notice on the surgery front, I had a laproscopic hepatic resection and I had way more pain than any of the other patients I talk to, including open resections. Maybe it's just my body, but between the sociopathic God Complex and the We Are VIPs Dude Bro Squad masquerading as residents, I'm guessing I was a surgical guinea pig. 

And no, I don't want to believe the bad things I think, but I also know I need to listen to my gut. I might be wrong in my conclusions, but the worry and instinctive aversion to this guy isn't coming from nothing. 

I only ever get bitten by the snakes when I convince myself I'm being silly and that they're just friendly caterpillars.

Anyhoo...on deck right now, trying to figure out what testing is needed to reveal if what's going on is what I think it is. Will the first round of testing catch it or will I need the exosome whatsit stuff?

In real life...we are preparing to host our annual Mother's Day bash. I hate crowds and Mother's Day is the worst, so clearly the answer is to cram a bunch of people into my house lol. At least we all know each other. I've been surprised that this has caught on. I guess I'm not the only one who dreads the hordes of Mother's Day.

Kiddo has been awarded her college credits from the state for dual enrollment. We are trying very hard to keep her moving forward despite her health issues. She has a part-time summer camp as well, her last because after this year she'll be too old (ah what happened to my baby? sob). And we've got her earning a little bit of money mowing a neighbor's lawn (on the riding mower, so very low impact). It's tricky because we don't want to push her too hard, but we don't want to not push her at all. She's also learning to knit from the local knitting guild.

Hubby and I are continuing with our dance lessons. We are making some progress and are discussing learning more styles...maybe tango a la True Lies for the Boomers and GenXers out there. We are looking at doing a big dance bash next year as we both have milestone birthdays in 2023. We'll see. 

I'm working on setting up a small orchard on our property. I love the physical activity, although these days other people have to do the heavy lifting for me. The downside is, I am not the best gardener. Nor am I the worst. I'm just okay. A lot of things die. But at least that makes it exciting when I actually harvest anything. 

Right now I'm watching my asparagus come up and trying to figure out how many of the plants are going to produce and how many have mysteriously gone to Glory. That and who's eating the leaves off my blueberry bushes. Scintillating garden CSI over here. 

On the business side...I still write but I've not published anything new in a while. I have another business set up that's doubling this year and I'm hoping to drive it to six figures in the next 1-2 years. Then I have a new passive revenue stream I'm trying to set up as well, but I have to learn Wix, which you think would be easy but I'm all thumbs at it. Ergo, I've been procrastinating terribly on it.

Ripping

This week was supposed to be quiet. No one has any doctor's appointments! Because I don't just manage medical stuff for myself, but for the whole family. The kiddo continues to have a daily fever but we don't have any appointments to address it for a while. My usually healthy hubby managed to have an urgent medical thing that's going to take several months to work through. So I've been to the doctor even more than usual because now there's three of us orbiting the medical industrial complex looking for a place to land. 

I'm everyone's medical coordinator.

Momming and marriage are a whole other level when there's medical fuckery.

So I was excited to see I finally didn't need to go within six feet of a stethoscope this week. 

And then...

And then something in my liver started ripping. A ripping sensation generally means it's ER time because a tumor's gone off the rails. I was on pins and needles, texting my husband to be on the alert, dreading the idea of throwing myself into the ER grinder again. I stopped eating completely and was so very very careful about how I moved and what positions I was in. Thankfully, after twelve-ish hours, it seemed to resolve instead of escalate. It went to the line, but didn't cross it.

Unfortunately, I'm still skittish and spooked and more symptomatic than usual. My liver has been irritated since my ultrasound a few months ago. Up to that point, I'd improved a lot. I could pretty much eat consistently. My energy is/was better. My liver didn't constantly feel like it was rotting inside me (a terrible feeling). Car rides stopped causing the bile ducts to painfully spasm (I assume that's what it is that's boinging like it's been zapped with a cattle prod).

Except the ultrasound brought some of that back. I don't know why the hepatologist ordered it. I really can't handle pressure on my liver like that. The tumors have a hair trigger and freak out. We're going to have to discuss it when I see them next. 

I need medicine to not be making things worse. 

And speaking of not making things worse, I'm watching the news on Roe v. Wade and wondering if I should get my tubes tied. I shouldn't be able to get pregnant and we are careful, but never say never. I'm not looking to compound things and risk jail if somehow my bizarre body manages to pull off a pregnancy that, at this juncture, wouldn't end well for anyone involved. And maybe I should do it before even that becomes illegal.

We seem to be determined to live in a dystopian hellscape anymore, don't we?

With regards to the genetics testing, I'm finding people assume there's something dire going on and I can't talk about it without causing some alarm. I know enough now to assume nothing dire until the test results come in. 

There IS actually a point at which you stop worrying about test results. You can only be scared for so long, and in reality, medicine moves so slow, you run out of scared long before they get back to you. (I've also lost all anxiety about anesthesia, but am still terrified of most surgeons...they have a particularly toxic subculture in my experience). 

The most likely culprits will generally just mean more testing and imaging anyway. 

It's not going to be that exciting, as I understand things now. There's no imminent death sentence. At least not from the genetic testing. Even with some of the more serious possibilities, it would appear, from what I've read and the patients I've talked to, that I'm on the mild to moderate end of the spectrum of things. Just my swamp hag age means it's probably not something that's super deadly. Deadly stuff gets you long before the swamp hag stage.

If whatever it is was going to be dangerous, I'd be much worse off than I've been.

This is more about finally having an answer for myself and my family. Finally being able to make sense of my body. Finally having magic words that will hopefully cut through bias and obstructions in the medical system so I can waste less time on this shit. And actively giving my kid a chance for a better outcome.