Medical Book Review: The Puzzling Case of the Doctor Who Wouldn't Stop Talking About Munchausen's

 

Okay boys and girls and theys and thems, I read another medical book and wow, was it weird. This one started out with a good premise. The goal was to help patients get an accurate diagnosis, or failing that, zeroing in on what else might be causing the problem. It has a fairly intelligent framework around that, and I started to get excited that maybe this book would be something special.

But then it dived into what was referred to as 'self harm'  and refused to come up for air ever again. Self harm is essentially attention seeking behavior by patients to the point of hurting themselves or undermining care. Aka Munchausen's. And I think this doc just really wanted to write a book about it because he abandoned his core premise and hyperfocused on this to the point where it got weird. 

Thus, the book doesn't end up being all that useful. If anything, it teaches people with Munchausen's how to hide it better. As I was reading, I was like, no, dude, STOP. But the author just keep going. Neatly outlining all the red flags. Like a machine. An absolute Robodoc of what to do that I'm sure the medical system would much prefer no one know about. But Robodoc's gotta robot so...

Thankfully it's an old book that I don't think too many people read.

I did get one good nugget out of it. I hadn't realized that laundry lists of symptoms were a red flag for mental illness over any actual disease process.

Looks at my laundry list o' wtf and sweats... 

I mean, I am over here working with genetics hoping to get a unified diagnosis for most of my shit, but I'm an odd duck. The online chronic illness culture these days is actually all about making videos of 100 Things That Are Wrong With Me: An Important List With a Sound Track.

And then they pull that at their appointments and are mystified when doctors don't respond well.

They pee in the pool for everyone. (And make videos about it just to make sure no doctor goes untriggered.)

Look, if it takes a half hour just to go over your symptoms--not your history, just symptoms--you might as well just wear red flags to the appointment. Get a hat with a red siren on top while you're at and let that bitch whirl. Maybe do a dance...

I mean, I'm fortunate in that most of my stuff is visible on imaging and documented and I'm an old hag so they expect my wheels to be flying off now, but still. It's very easy to push the crazy pants patient button in my experience.

I've actually coached the teen on this. Teens and tweens right now are big on these laundry lists of all the things and they don't know enough A&P to tell what's important. And to be fair, that's not their fault and medicine should be less hair triggery about laundry lists. People can't always tell what's important and the things that bother them the most are often not the most revealing in terms of diagnosis.

But I've been around and I've seen some improvement in my care with certain approaches. So the framework I try to use is as follows...

Function is what matters. What is impacting your function the most? What function have you lost? 

Don't lead with pain. Especially if you're still managing daily life despite it. No one cares about pain (they should, but they don't) and the system largely doesn't treat pain anymore either--we're in a cycle where everyone's an addict even if they're on nothing and we don't really have very good pain management. Expect very little help with pain. 

Pain is too common for too many different issues to be much of a useful data point. Extreme pain, point specific pain, obvious injury pain is a little different, but even then it's not as relevant as you'd think.

Fatigue is also too non-specific. Every illness has fatigue as a symptom. It's not really helpful to focus on it. Falling asleep in the middle of working, that's important. Being tired all the time...that's 99.999% of humanity and it's difficult to sort out what's coming from a health issue that should be treated vs. the fact people stay up too late binging Netflix.

Also, most people don't understand what clinically relevant fatigue is. I think the best example I can think of is someone who told me they thought they had adrenal insufficiency too....while training for a marathon and working two jobs. That's not illness related fatigue, guys, and it never will be. 

Fatigue is profound. You can't wake up, you can't go, you don't function. It's not doing everything and feeling tired...because of course you're tired, you're doing too much--maybe start with the obvious and take some down time, you know? 

Another example, when I had mono, I suddenly had to put my head down in class and I couldn't stay awake. My professor was the one who suggested maybe I should go to the clinic. Up to that point I'd been an enthusiastic participant in class, not a zombie crashing on her desk before the lecture even started. Marked, significant change in function...that's fatigue.

Oh look...there's that word function again.

And even with the mono, the most clinically relevant piece of information was not the fatigue. It was the golf ball sized lymph nodes bulging in my neck.

Medicine just has no ability to discern the importance of fatigue. There's no test. No tool. And everyone saying they're tired has made physicians numb...fatigue doesn't register. 

Marked fatigue that impacts function is more relevant. Even then, they'll first screen for the obvious, thyroid, iron, maybe b12, maybe d, look for infection etc... but that's not bad. Starting with the basics is useful. You should rule them out and they do affect a lot of people.

The problem is once physicians run the basic labs and they all come back normal, they pronounce you fine and then quit on you. 

My liver tumors have never thrown a bad lab level. Not once. So despite a gross anatomical deformity in my stomach that would draw commentary from physicians, no one ever investigated further. Because the labs were fine AND the thresholds for accessing imaging are so high, the system, by design, left me to fester almost to the point of needing a transplant.

I was set up to suffer with the world's healthiest blood work. It's perverse. This is medicine. Get used to it and be ready to not quit even though your physician has. Probably how to do this needs its own post...

Okay. Moving on...

Everyone has anxiety anymore. Everyone.

It's so bad there's actually a clinical psychologist on Youtube giving lectures and guided meditations about 'dark times.' She acknowledges the bad stuff happening is real and tries to help everyone synthesize and cope with the world's most expensive, slowest moving apocalypse. 

Not being anxious is what's unusual at this point. 

(Also, while I think she's very smart and very talented, I had to stop watching because it was creeping me out too much to have someone validate how real the mess we're living in is. I'd rather not confront it so frankly and directly, even couched as it is in a psychological framework. Her videos gave me a growing sense of horror as opposed to grounding and centering. Your mileage may vary on that however.)

All this to say, unless you actually intend to trigger a psych referral, shut up. Seriously. Shut up.

If those are fighting words for you, hang on a second and keep reading.

There's nothing wrong with needing mental healthcare BUT medicine uses it as an easy out. Focus on function or you'll have a missed diagnosis and gain a bunch of weight on antidepressants that you probably don't need (and research is increasingly showing mostly don't work). And once the mental health box is ticked off it can be very difficult to get medicine to see anything else. 

The nasty trick with this is once you gain fifty pounds because of the antidepressants, medicine will blame everything on your weight while refusing to recognize the fact they caused it, and further deny and delay care. And they won't help you with the weight gain to boot (although, with the advent of medications like Ozempic, maybe that will change). Some do no harm, right?

Tread carefully. You should be open to the idea that your issues could have roots in mental health, but you don't want medicine to immediately punt you to psych, either. You want a full work up. A thoughtful analysis. Don't cheat yourself out of it. 

Your symptoms are like a Find the Difference picture. You need to highlight the things that will help reveal a diagnosis, not dwell on symptoms that occur in a huge percentage of issues. Learning what's relevant is tricky though. Which is why everyone who can manage it should learn as much A&P, Biochem, Microbiology, and Pathophysiology as possible.

 

Get your symptoms down into a thirty second explanation. Be succinct. Don't spiral. Frame things well. One of the things I say now is 'I'm following up on some genetic test results.' That gives everyone the macro view and it establishes the legitimacy of what I'm going to say next.

Important caveat: If it's not textbook, it'll take forever to get diagnosed. I mean, just look at what happened with my liver, right? 

If you happen to fall into a blind spot of medicine...same problem. What's a blind spot? It's dismissing an adrenal tumor as an incidentaloma and then refusing to investigate an endocrine cause of medication resistant hyptertension for ten years. 

They can't see what they're told not to see, and where no one is looking, nothing will be found. Unfortunate, but true. (One of the weird things about me is I often look for what's not said, for what's missing, for what's not there. It's been a useful mental model in business and it would work well in medicine, but it's not a way of thinking that typically occurs to people.)

If you fall into either of these categories, expect it to be a major cluster. 

Sometimes you have to go to a doctor for a while so they can see you enough to think differently about your case. You almost need to show them you're not completely insane or lit. Which is annoying because they are often dismissive to the point of gaslighting, but it can be effective to just keep showing up. Yes. I took the med, did the therapy, and it did nothing, I still can't xyz.

Other times, you have to wait and tough it out until more wheels fall off and something they deem clinically relevant emerges or you somehow meet the threshold for ordering more advanced imaging or testing. The unfortunate reality of this is it often requires patients to suffer some degree of damage or harm. 

I stumbled onto the genesis of this framework from my experiences as a patient who was also a mom. It started primarily because opiates don't work for me and I was often in the ER by myself (with a small kid and no help, hubby would be on baby duty) and I wanted to be able to drive home if I wasn't admitted. I expressly did not want opiates from the ER because I still had to mom, you know? Advil and Tylenol (or IV Toradol) work great for me so I'm never in the ER to treat the pain itself.

This 'don't want opiates, not here for opiates' is what led me to focus on function and it has ended up being one of the most helpful approaches to engaging with the medical system.

The spiel that evolved as a result was I don't care that I have pain, I care why I have pain. This isn't normal. I can't tell if I'm okay. I can't x,y,z <--list of activities I couldn't do. Sleep. Lay down. Walk. Eat. Etc... 

When one of my liver tumors went nuclear, I could barely talk or breathe and I couldn't stop shaking. There was pain, but I was so distracted by my body's reaction to it, I didn't really feel the full brunt of it. And I felt like something was ripping inside me (the tumor was internally hemorrhaging). I couldn't even drive myself to the ER--I can usually drive even when pretty sick, this was beyond that. 

Fuck pain meds, fuck the pain, tell me what the fuck is going, know what I mean?

(So naturally they gave me morphine for the liver tumor lol. That just made me tipsy for a few minutes and was of no use at all and I was discharged with no diagnosis. See the part about not being textbook. Sigh.)

Part of the reason why it's so hard to get a diagnosis is patients don't know what they don't know so they think everything is important. The doctor gets overwhelmed by the sheer amount of information taking up the small amount of time they are allowed to spend with the patient and it impacts their ability to think their way through the noise unless there's something that signals a clear pattern. The defense mechanism is to either get dismissive or suggest you need an antidepressant.

Patients then get more and more anxious, more and more upset. They have no idea how to improve the situation so they read stuff online or watch Tik Tok videos full of laundry lists. It sounds like a great idea and they start writing their own lists and bringing them to appointments. The doctors only see red flags, and no one has a good time and it's a giant mess.

So kill the laundry lists. They aren't helping. It registers as attention seeking. Pain and fatigue don't matter to medicine like they do to you. Focus on function. Get the spiel down to your top three symptoms that aren't pain or fatigue. Everything else you let come out as the doctor asks questions. That will maaaaybe help them focus and improve your odds of a diagnosis, or at the very least, the dumpster fire you end up with will be very efficient.

Reality of Oxygen

Don't listen to me. I'm being way too optimistic.

My oxygen is still not right.

(Oh and note, these posts are not chronological. Like, I posted yesterday about the asthma, but I'm not posting in real time. Things are disconnected from date. The asthma is under control. It's been a few days.)

My oxygen is really 95.  I am mostly that when I check. It'll bump up to 97, but not nearly as often as I say it does. And I am dropping lower way more than I'd like a lot more than I'd like.

So my question is, do I really have sleep apnea or do I have some covid fuckery because it's normal for oxygen to drop at night (to a point) and if I'm not normal going into sleep, what happens while I'm asleep?

Is it apnea or is it covid?

Inquiring minds want to know.

But no wonder I'm so tired all the time. Things aren't right. Still.

Asthma is behaving now that I'm back on Symbicort. I also took 10 mg of prednisone in part because the asthma was spiraling and in part because I wanted to see what it did for this bone tired fatigue.

 Without the Symbicort, I started having sinus infection type symptoms. Very very very gunky deep deep deep up there. I was a little worried I was actually getting sick, but the Symbicort stopped it so it must've been the asthma gone wild.

The 10 mg of prednisone was nice. Effective for the asthma ( no doctor will agree with this but experience shows I can get high impact from low doses if it's not too far gone). I stopped panting like a dying dog every time I climbed the stairs and I had a more normal level of energy. I have no idea if it means anything though. 

I did finally haul my sorry ass in for the cortisol/acth blood work (before the 10mg) so we'll see if any of my weird medical spidey instincts have any basis in reality.

(And I don't know what my oxygen was while off the asthma inhalers. I really thought I was fine. I randomly checked one day just for shits and giggles because I found the pulse ox in my drawer and it was at 91 and I was like, whaaat? Why? So then I started checking more frequently. Even with the asthma meds on board, it's not normal.)

Oh. Ha. Ha. So Funny.

 

Asthma is coming back.

Just like that.

Boo.

We'll see. 

Maybe this is as bad as it gets. 

Maybe I still don't need inhalers. 

Maybe I need more menopause.

Maybe let me dream a little longer?

Funny how it just spins on a dime. I thought there'd be a ramp up. Nope. Just suddenly full on asthma. 

Where's My Virtual Race Medal?

 

(This post is a brain dump. Probably of no interest to anyone. I'm chasing focus today. Thought some word vomitus here might help.)

I finally did it. Spent a full eight hours doing medical shit. Good Lord. I feel like someone forced me to participate in one of those virtual race exercise thingies. Where's my medal? I want a medal.

It's just appointments. Nothing exciting. Schlep an hour here for this for the teen, drop teen at home, slurp a quick lunch, schlep back out an hour in a different direction, do a bunch of testing stuff. 

Bah.

Our hell month is almost over. All I have looming is maybe the colonoscopy and upper GI scope. Well, not really. I'm telling myself August won't be a bunch of medical mess, but that's magical thinking. I'll still have stuff. Teen still has some different weekly appointments, but hopefully August will be overall slower. Maybe. I am dreaming...

Someone asked me about following up the kidney stone. I...don't know? No one said boo to me about doing anything. I'm not looking for more to do. I seem fine. The docs don't care. My GFR is amazing. Can I ignore it? I'd like to ignore it? So I'm ignoring it. If I get some monster stone or something changes, I'll reassess.

I'm still really tired, but I assume I'm not having oxygen drops anymore. I haven't felt the need to check the pulse ox the last few weeks. The covid joint and nerve pain has pretty much resolved now...I'm sleeping better because the pain isn't waking me up. 

I read in the medical literature that covid stuff usually phases out within 2-3 months so I used that as my benchmark for whether to seek care for long haul or not. The fatigue is the only remaining symptom, although I imagine it would be blamed solely on the sleep apnea which...eh. We'll see.

My foot isn't super pissed at the moment so it's not disrupting my sleep.  Maybe triggering it/reinjuring it with better shoes offering more support got it to heal more fully this time? We'll see. I'm swimming a bit, but not doing anything super strenuous that would freak it out.

Yeah. I should exercise. But it seems so futile when I know something will drop me right back to zero again. I have lost my interest in fitness. I'm burned out. Maybe it'll pass. I don't even want to resume dancing lessons. I'm not sure I can right now. I'm just so tired.

Asthma still holding steady without any meds. That's a miracle. Very interesting. I'm super curious to see what happens with this. But of course, this now means I need a rescue inhaler on me at all times in case it spins out of control without warning and I'm super not used to that--with daily inhalers, I didn't typically need to worry about acute attacks out of nowhere, and if things flared, I had enough pre-installed protection that I could limp along until I got home.

I mean, I did/do sometimes carry albuterol with me just in case, but it's not been a hard core must have every day carry thing. It's been more knowing I'm going to be somewhere that presents some risk or where it won't be easy for me to access my meds.

With stopping all my inhalers, I don't know what's going to happen next, but I do know I don't want to be caught by surprise. I'm trying to arm myself for bear. Trying to be proactive here.

How strange. Stopping meds has caused the problem of remembering to keep emergency meds with me. Ha. Not really what I was going for, guys. 

Garden stuff... no one cares but it makes me happy so shush and read. Harvested green beans twice so far. They are SO fresh. Oooo. Highly recommend. They are happy growers, almost fail proof. I'm just not sure my succession planting is going to pan out. I started running out of both seeds and space. I'd like to try to plant around twelve more plants, but we'll see if I get to it or if I can even find seeds. Need to research if I can just use the fresh seeds from the beans I'm growing...

I'm getting antsy because I have garlic coming to plant this fall and no idea where I'm going to put it. And I want to get twice blooming irises and make this massive iris bed of pretty for next spring. So much to do... I don't have the energy, but hubby will spot me.

Writing wise...this got long. Probably not super interesting, but I bet there's stuff in here you haven't thought of before. 

I'm going through a huge creative period that is far outpacing my ability to work. I have a trickster imagination. It likes to produce when it knows I don't have time to work. Ergo, I'm bursting with millions of good ideas...some I've started, some are brewing, everything is gold, which is rare. It's important not to waste the treasure trove that's popping up in my head. It won't last. I need to get stuff down so I can leverage it later.

And I'm doing a ton of reading and watching different shows in my genre which is fueling all this. The market has shifted a lot and I'm finally feeling like I'm getting a sense of the voice/angles/tropes that are most marketable now as well as spotting some untapped opportunities. Hopefully my health will let me have a productive working period for a while. 

I've also been reading more lgbtqia+ bipoc fiction and it's been very helpful as I'm looking for ways to represent diversity in my work without being a dumbass. 

 So it was interesting to be reading an lgbtqia+ bipoc anthology and see a slur just casually dropped in there and not for characterization, just as a word to add flavor. Hooligans. We all use it. It's very common but it's actually a pejorative directed at the Irish.  

I can't decide if they didn't know it was a slur--it's not one you'd think of as being a slur--or if it was a commentary on colonization? Which would be an interesting spin although probably I'm overthinking it. And also some people don't consider it a slur at all, and do we even consider it a slur anymore, has usage evolved past its origin? 

I'm not sure how to evaluate it and I'm all aflutter trying to sort it out lol.  I've tried to remove pejoratives and slurs based on a nation or ethnicity from my work as much as I can. I don't think many people realize how many words and phrases used to add 'flavor' are actually slurs with a pretty awful history. 

And then you have ancient slurs that have lost their punch. Vandal. Barbarian. These were used in ancient times and it's hard to feel like they refer to any group negatively, but originally they did. (I tend to let the ancient ones that are pretty well disconnected from their true spirit slide. It's hard to decide how far to take it. However, I'm pretty sure if I used the word vandal, Germans wouldn't take it personally.  And barbarian hasn't been a slur tied to race or ethnicity for a thousand years or so.)

Some people may think this is overkill, but a lot of words we use every day literally come from colonization and the othering of people in ways that led to massacres and horrible abuse. Same as sexism is embedded in our day-to-day language and patterns of speech...you can't unsee it once you look. And if we want to do better, to be better, we might need to use better words too.

And probably I've written a bunch of dumb shit here by the way. Used words that I wouldn't now. I will probably slip up and forget in the future. This stuff ends up hardwired and you don't think about it, you just write it or say it. It's very hard to untangle it from your neurons and yank it out of the language centers of your brain. It's a default by and large. With editing I can catch a lot of it, but we don't go around editing our daily lives so cleaning up that part is more of a challenge.

Interesting Developments

 

All right, Scooby gang. This week, we reveal a new villain. One no one saw coming. Is it THE villain? No one knows. Hopefully, we figure that out before all the guests are dead.

Anyway, I apparently have sleep apnea now. Huh. I am guessing it's a parting gift from Covid because I have never felt like this before. Not unless my adrenal glands weren't functioning.

Which I still haven't tested those. I have the order, just don't have the time and energy. I'll get to it...eventually. 

(For those who are like if you think your cortisol is low why the fuck don't you haul ass and test you faker...ha. Well. The thing is. I can't haul ass. I don't got the ATP for that, guys. And I'm sorry, but I just can't get excited about anything. I could lose a limb and be spurting arterial blood and I would just yawn. There is no adrenaline left for medical stuff. It's always big bad fuckery. It can't scare me anymore. Decapitate me and attach my head to a healthy horse (poor horsie) and keep me alive...that would impress me.)

Oh, and follow up to the last post...I actually did not gain weight. I lost more. Supposedly that's not how sleep apnea works, but whatever. Maybe the Ozempic is doing a thing now. Maybe my adrenal glands are garbage. 

I am still undereating which is frustrating. I'm just not hungry, and if I'm busy, I'll forget to eat anymore. The other day, around 3 I thought I was going to pass out and that was when I realized I'd eaten only 250 calories for the day. I don't always get hunger cues. My body will let me go straight to 'going to die' and still not tell me I'm hungry.

I am attempting to pay more attention and make sure there are calories are regular intervals. I'm not trying to be mean to my body and I need to keep myself upright.

(Okay. So yes, obv my calories are low hence the weight loss right? Eh. Do you know how many times I've starved and not lost weight? Eaten perfectly and not lost weight?  Did a diet with the husband, ate less than he did and he lost five pounds while I lost nothing? Like, doing everything perfectly with no results is my baseline. To the point where undereating doesn't even connect in my brain as a cause and effect for weight loss. I only noticed the disconnect when reviewing what I'd written. Is it possible that's why I lost weight? Sure. But I've also seen a lot of really fucked up metabolic patterns in this body so I'm reserving judgement.)

The other bizarre thing that happened to me is I stopped my asthma medications. So...when you have to start with a new pulm, this is a thing they do--making you prove you have asthma. You stop your inhalers, do pulm function testing, maybe a methocholine challenge, and then, if it plays out the way they need it to, you get your inhalers back.

I've done this dance many times. I have never been able to stay off the inhalers. The asthma immediately kicks in without the inhalers. Except...this time it's not. 

Now this. This has my full attention. Why the whaaaat now? Did Covid cure my asthma? Is menopause making improvements? Did aliens kidnap my lungs and give me good ones?  Like, what the fuck is this?

I'd be delighted to be off inhalers. To have lungs as strong as steel. I am not convinced this will last, but I'm willing to give it some rope to play out.

My pulm function tests showed inflammation, but lung capacity was 110% of predicted. I feel okay. Granted, I'm not exactly doing anything aerobic these days (maybe the weight loss is muscle loss), but still. I've never felt like this off inhalers. It's been 6 days. We'll see. It's not an all clear yet. I have to get through different seasons and different triggers first. And I did have a small asthma attack last week...inhaled some particulates. 

(Who knew gardening had so many little particles to inhale? I wear a mask 95% of the time when I know there's going to be stuff in the air. The other 5% I play roulette and lean back, turn my head, and hold my breath...I lost that round last week.)

Okay so looping back around to apnea...the CPAPs are all backordered. I have no idea when I'll get treatment. So that'll have to just wait I guess.

Lastly (on the me front) I've started a colonoscopy contest with the husband. God. We are so middle aged lol. But I'm trying to motivate both of us to get the butt stuff done. Whoever gets a colonoscopy first wins. What the prize is, we are still negotiating. So far, I'm in the lead as I actually have an appointment in a few weeks and hubby's got nothing.

As for the teen, we had an interesting ped appointment. We've lucked into a very progressive specialist team at a major hospital and they have an integrative clinic that incorporates massage, acupuncture, chinese medicine etc... All the woo stuff, but administered by physicians in a big hospital system. 

But also mild cerebral palsy was suggested as a possibility for the first time. Me being me, it was already on my radar, but it's interesting when a physician sees it too. I don't know if that's part of the problem. I don't know if we'll ever get that diagnosis or any actual accurate diagnosis. 

But soft braces for knees and ankles are being suggested now. And we've never been able to stay away from PT for long. We're always bouncing back (ha) to PT because of falls. I don't know. We'll see. It fits, but also doesn't so...

As for the woo stuff, the teen is willing to try some Chinese herb stuff. I don't know what else she's willing to do. They offered body work and accupuncture but she's got sensory issues and hate needles so...

We already do CBT and neurofeedback, which she really really likes the neurofeedback for the ADHD. It's a little woo-y but there's some science on it and it's not dangerous, just expensive. I'm not sure how much longer I can swing paying for it to be honest. We're currently looking for a lower cost diy option she can do instead. 

The heart stuff checked out. Pots-y teen stuff. Unpleasant but largely benign. Cardio offered medication, but I suggested to the teen that she try to manage it with salt and water first as meds tend to add second, third, fourth order effects. Make meds a last resort. Never take meds lightly. Cardio was cool with DIY salt and water and we'll revisit in a few months.

PT is not going according to Doctor's orders and has been very 'pain is okay, you're supposed to hurt after therapy' when this is not a thing where pain should be required. So I've had the joy (not) of writing polite wtf emails, trying to advocate and also not piss people off, because the teen is a wreck after PT. The PT we've done in the past has not been this difficult and the Doctor expressly told us it wasn't supposed to nuclear level. But it is.

And I've had to remind them that her baseline isn't normal so it's making the issues she has now worse. They need to factor in her history. I don't know if they will or if they even can. I doubt that there's much nuance in the frameworks for PT or just medicine in general. It's like the liver surgeon who couldn't absorb the fact I have (had?) asthma and discharged me with an oxygen of 84 like 'oh, well if she dies, she dies but it won't be on my record.'

Why Get Medical Care in the US?

Because of the state of the US, we are more seriously considering relocating overseas. We'll see what actually happens, but in evaluating different countries, I've started to think maybe we should've left a long time ago. It might have actually improved my healthcare.

In many countries overseas, most prescription meds are over-the-counter. There's a lot less gatekeeping. If you know what you're doing, know what you need, you can DIY the whole damn thing.

Better quality of life, lower costs, less medical stress (just the time savings alone omg). I know my meds. I know my labs. I don't need help at this point, just access to MRIs every so often.

But I was trying to think if a specialist ever did anything...well, special? Because what if I have a blind spot? What if there's some magical procedure they do that I might need?

I've not seen much that impresses me to date, however.

What I have experienced... 

Argue with me? Yes 

Deny testing? Yes. 

Deny medications for established diagnoses*? Yes. 

Scream at me**? Yes. 

Not read my labs and stubbornly refuse to diagnose me? Yes.

Misdiagnose me? Yes yes yes. Constantly.

Not be available in an emergency? Always. 

Cost too much time and money to do all the above? Yes.

When I had an adrenal crisis, it was because of the specialist. Hell, when my adrenal glands suppressed, it was because of the specialists. When I developed Exogenous Cushings trying to treat the adrenal insufficiency, it was because of the specialists. 

When my endocrine tumor didn't get diagnosed for ten years even though I knew what it was because it was that obvious...it was because of the specialists. My liver tumors were left to fester because of the specialists.

What do specialists do exactly? When are they special? (Note to the universe: I am NOT inviting you to personally show me. It's a rhetorical question. Don't come at me. Thanks.)

So, like...why stay in the states? I can do it better and cheaper elsewhere. I'm fairly stable. I largely know what I'm doing. I go to all these specialist appointments only because this system forces me to in order to access meds and testing. They look at me and prescribe medication I can figure out I need by reading a Healthline article. Where's the expertise?

So why am I here again? What's the point? It costs a fortune to get treated like shit in the US. Why bother?

For the longest time I thought having a good relationship with good specialists was key. That I should stay put for that. Then they all left their practices within a six month period driving home the lesson that it's only a transient relationship. There is only the illusion of continuity of care. Or that a specialist will do anything. It's all a fever dream. All of it. A fever dream that serves profits not patients.

I hadn't thought of living overseas as a hack to improve my care and cut the hassle before. Now I'm utterly tantalized by the idea that I can stop the hamster wheel of appointments, and in one pharmacy visit and one lab order, I can take care of everything for the whole year.

One and done.

Can you imagine how amazing that would be?

I could be free.

At this point, all the Americans are probably angry. I mentioned my thoughts to a few folks and they were deeply, deeply insulted. America is the greatest nation on earth. We have the best healthcare in the world.

Oh, honey. No. That's propaganda, not reality. 

Well, they say, anger steaming out of their ears, how do you know the medications are good? If the doctors are good?

Well, one of my degrees is in geopolitics and I worked in international business, am multilingual, have traveled extensively, and have already had to navigate care in some pretty dodgy places while travelling (thanks to asthma pretty much everywhere I go and my greater saphenous vein completely and randomly failing while in rural E. Europe. Ever shop for compression stockings in a hole in the wall in the former USSR? I have. And yes, I literally can go nowhere without some kind of health clusterfuck. It's a curse.). 

I've also had friends and family who've lived overseas, and believe it or not, medical care is often better than the US in some pretty poor places. The corporatization of health care has done a lot more damage than people realize.

They don't want us to know that, though, because that would interfere with the profits. We are purposely not told how poorly the US ranks across several key health metrics. They put that information in print media because they know no one reads. You'll hardly ever see it on TV news. At most, people might have a vague awareness that our maternal fetal mortality rate is unacceptably high.

Anyway, moving on...I know where the good democracies are,  where the world's largest rising middle class is, who's got water I can drink without getting the shits, even know how to avoid pit vipers, and failing that, there are large expat communities online for any country you can think of. It's doable. I just never seriously considered doing it until I got hit by the confluence of losing all my specialists right when women's healthcare was being criminalized.

I've already been coaching the teen to make sure her education is appealing to other countries as I could see there probably wasn't much of a stable future here with all the polarization. So we've been slowly inching toward this for a while. The switch really flipped after we lost Roe.

Why are we here when we could probably be happier and healthier and freer someplace else?

Hmm. We'll see. I've got to get the teen through college, but after that, and assuming we don't have to flee the country in order to access healthcare before then, we may very well pack our bags and go. 

*The most egregious example continues to be that completely unhinged allergist who told me I didn't have asthma, refused to prescribe maintenance meds, told me I had blood clots instead and then refused to actually treat me as if they really thought I had blood clots...such an interesting choice given how malpractice laws work.

Oh wait. I forgot the nut who told me they could cure my rare tumors but wouldn't tell me how because I didn't do a weight for the nurse. Can you imagine being that fucking petty and grandiose?

**The irony is I'm most often screamed at when my oxygen is so low, I'm barely talking. I'm pretty sure I'm not somehow being offensive because I'm not saying much. 

I'm always bemused by those physicians who lose it on me when I've said maybe ten words total. I think the most famous incident (which I believe I mentioned years ago here) was when I'd lost twelve pounds from weeks of out of control asthma...I was barely hanging on and stuffing my face with insane calories only to lose even more weight every time I turned around. After weeks of going to the primary over and over because I was just getting worse and worse, I was finally referred to a jackass of a specialist. 

The pulm screamed--literally screamed--at me 'who said you had asthma, who gave you a nebulizer' and all I could do was just blink at that horror show of a dumbass and then strain like a strongman trying to life a car to heave the next tiny sip of air into my lungs.

My theory is they know I can't fight back and the baseline for them is likely asshole so I get drop kicked because they had a bad day or need to use someone as a whipping post. Acute asthma is a gag that just makes me easy pickings.

CHEK2 Clarity

 

All right. We did a mammogram instead of an MRI so I could talk to the staff more about my special snowflake ass.

Mammogram is clean.

Without CHEK2, my risk for breast cancer would be ridiculously low as there's no family history across multiple generations.

But with CHEK2 it can be as much as 40%.

Boo.

However, a mastectomy isn't in the cards as things stand now. Which was the absolute best news. OMG. 

They suggested Tamoxifen but I'm undecided. Someone shared with me that it caused people in their family to grow tumors, which I know, I know, it's anecdotal. I don't care. I find that anecdotal stuff can link up with evidence quite often. And I'm not looking to give my tendency to grow beaucoup tumors a boost. We'll see. 

The really nice thing is I don't have to make any decisions now, so I'm not. I'm tabling it. I have enough going on as it is, and in reality, the colonoscopy I need is more critical as I'm late on that screening no thanks to the liver and the pandemic.

As for the MRI...I would like to do one and then maybe again every few years instead of yearly. They said I could do a second mammograms with ultrasound in lieu of an MRI. At the moment, I'm thinking (things could change) I will do one initial MRI as it's way more accurate than a mammogram (65% vs 95% I was told). It seems prudent to have a good look and then switch to mammogram with ultrasound.

They did offer me the option of something called a fast MRI which uses less contrast, but I don't know if that matters when there's an allergy. And of course, insurance won't cover it.

The oncologist had actually heard of CHEK2 which was refreshing. I've been surprised by how few physicians know what it is. But while the Onc knew what CHEK2 was, none of the risk assessments they do take it into account. Everything is BRCA focused, from the paperwork, the risk assessments, even the techs talked to me about 'your BRCA mutation' lol.  

The upshot: It's difficult to really understand my actual risk. Everything is a guess. Am I the full 40% risk or less? Who knows?

Hmmm. I get why people might find a medical medium useful. There's just so much guesswork and shooting in the dark that Tarot cards and good vibes and spirit guides might just have some insight. It's not like anyone else knows...

On the what's life like post-covid front...I'm still really fucking tired. I've actually started napping. Like, more than once. Jesus. I never nap. This is highly unusual. On the upside, the sleep feels healing. Maybe it'll be a net positive. I'm trying to pay more attention to pacing myself and building in more down time, which isn't easy right now. But I'm trying. 

Eating is going better. Weight loss has stopped. I think I've even gained some back. I beefed up my calories for a bit to aid recovery and now that things seem stable, it's time to tighten up again.

In other news... some mom posting for ya.

The teen took her English placement test for dual enrollment and placed at college level, which was good. Writing is her strong suit, but she's not a pressure performer so it could have gone either way. And I feel vindicated as a homeschooler (yes, we did, in fact, provide a good education for our kid) but also my mom instinct was that she was ready for college and look, here she is proving it.

Next up, we have the Math placement test which is even more of a wild card in terms of performance under pressure. She might do great and end up placed at a level she's not actually ready for (not good), or she'll bomb and be in remedial math (not good but doable). I'd prefer she not inadvertently outpace her actual skill level, and I'd be fine if she came in at a level a bit below her capabilities as it'll allow her to learn what college is like without also feeling like she's drowning. 

Being naturally mathy but not consistently so is a tough mix. It's like being a brilliant chef but you can only cook with your hands tied behind your back. She can intuit a lot of math on her own, but not all of it and then that pisses her off so she gets distracted by her emotions and it turns into a cluster. Finding a math curriculum that works for her has been a bitch. Right now, she's teaching herself algebra using a textbook and it seems to be working well for once.

Anyway, two paragraphs on math...can you tell I'm worried? Aaaaaaah.

I don't know if anyone remembers, but she has a neuromotor disorder (which because nothing can ever be simple is, of course, grossly underserved in the US) with an ADHD/anxiety comorbidity. The way Lyme went after her joints (and is apparently never leaving, and reminder that it was diagnosed at a major, nationally ranked medical center, not at some woo BS clinic) has magnified her issues with coordination. Soooo testing and choosing levels can get hairy.

Aside from placement testing, I've been working to gain access to the accommodations she'll need at school. It's all moving along. I've been super behind because of Covid and then whatever that whacky shit was my body did a couple weeks ago (aka suspected kidney stone). We'll be lucky if classes still have openings by the time we're finally able to register.

And last but not least, she's thriving in her volunteer work with the city this summer. She's learning a lot, manages her own schedule, and is taking initiative, growing her independence. 

Since we've established, as best we can, that her health stuff isn't imminently dangerous, I've been nudging her out of the nest as much as possible and letting her see what she's capable of. She gives me a lot of teen 'tude about it lol, but at the same time, she's volunteering more and more of her own volition. I'm delighted. Finally a thing goes well.

The List

 

1. We did test the one gene for the liver. It's called one thing if you have it but the actual gene goes by something else, which was why I thought we didn't test it.

So no known genetic link to the liver tumors to date. We'll see if there's any further insight to be gleaned from the exosome testing.

2. I realized we have appointments every day this month. Either for me or the teen. No wonder I'm so fucking exhausted. These appointments take hours. Some locations are an hour transit each way plus however long the appointment and labs are. It's easy to lose half a day and it takes so much energy.

So that's my life for the next several weeks. I have no idea how I'm going to work. Normally, I would have the energy to function around the time suck, but right now I don't. 

I've been thinking about whether to go to the covid recovery clinic here, but honestly, I don't have time for it. Maybe in September.

Mostly I want the medical stuff to stop. Yes, I started a lot of it. Doesn't mean I like it. I also didn't know how it was going to play out. They warned me about how I might be uninsurable from genetic testing, not anything else. (Spoiler: I'm already uninsurable. Asthma will do that to you.) And I certainly didn't give myself covid and whatever this forever recovery shit is.

3. I'm watching the news on the latest covid variant and just shaking my head. While I'm doing better, my oxygen still yo-yos. I think about all the people like me, coming into another covid infection already impaired from the last one and I wonder what keeps those of us already hit from being completely obliterated? 

Like, if I get covid again, I'm coming in with a 95 average oxygen level. I'll bounce up to 97 but I won't stay there. And I'll still get drops that go pretty low. So what does covid round 2 or 3, or 4 do? It's going to drop me into the 80s instead of bottoming out at 90 (like it did with the first round) since I'm already down?

I made some noises about being concerned about the drop in my oxygen baseline to the new pulmo. They blew me off. 95 is still good, I was told. You're good. You're fine. Such lovely toxic positivity.

But I'm extrapolating. Try to keep up. If my baseline has dropped, it means I get my ass kicked faster when the bugs hit my lungs. You want to be at 100 when a bug comes for you, not have oxygen already half way to needing to be hospitalized. 

Ideally, I get my oxygen to stop visiting 97 and actually stick there, which is as high as I can go ever since the 2010 infection that tried to kill me. And if I don't, I'm going to crash that much faster. Sorry, but I'm not positive about or thrilled with 95. It needs to go back up or I'm going to be in trouble.

Anyway, back to covid. The vaccines are fairly useless with this latest variant, although they are keeping up the theater that they'll keep you out of the hospital. I'm skeptical they'll do anything since it's been months since most of us have had a booster and we know the efficacy decays significantly and this new strain gives not one shit about any previous immunity. 

They say the vaccines would have saved only about 20-25% of those who died. How is that a rip-roaring success? It's better than nothing, but it's not close to being enough. It's definitely not great. Would you buy a car that only worked 20-25% of the time?  Only if you were desperate, only if it was your only option, right?

We still don't have a vaccine for Omicron. Our logistics are far too slow. We can't formulate, produce, distribute, or administer nearly fast enough. We'll all have had Omicron by the time there's a vaccine. Probably this new strain too.

Like, it's not working. None of it is working. And no one wants to think about it. Everyone wants to believe it's over, we've handled it, it's fine, blah blah blah. And then we all get covid again. Magical thinking killing us slowly over here.

I don't know. Maybe Paxlovid will save us. Assuming they can get their heads out of their asses and actually prescribe it and we have enough of it to go around.

Working Theory

 The working theory from the hepatologist is this:

Right sided pain means right kidney stone and the right kidney is right there by the liver. Ergo this particular Rube Goldberg session was likely the kidney bitch slapping the liver.

Conclusion: It was a kidney stone.

Meanwhile, I've continued to drop weight. I am eating. I had that steak--it was delicious. I had a big bowl of ice cream. The liver didn't like it, but I ate it all anyway. 

I'm not exercising, not burning any calories, because I made my foot-issue-that-we-thought-was-because-of-the-spine-cyst-but-it's-not worse by trying to garden and ramp up to more of my regular activities. I've had to be on complete bed rest for the last two days to ensure I would even be able to walk to make it to my appointment with the hep.

I've also continued to be very tired. I actually napped the other day. I never nap. Not unless something's wrong.

I'm either recovering from the world's smallest kidney stone, or something else is brewing. Or maybe it's just some Ozempic fuckery. I have no idea.

I'm working on the out-of-pocket lab work to see what my cortisol and acth are doing.

And the hep is also retiring. So I will be losing all my cornerstone specialists in the span of six months. There is at least more of a coordinated effort to hand me off to another hep and not leave me flailing so hopefully it'll work out. 

Also on the board...my upcoming CHEK2 breast MRI uses contrast. The contrast is listed as an allergy in my records and no one has said jack shit about it. Because of the total silence on the subject, I assumed there would be no contrast, but I've since learned otherwise. This has resulted in me trying to contact them to make sure they know and that this whole thing doesn't devolve into some clusterfuck of stupidity.

Because I'm going to need someone to prescribe me 150 milligrams of prednisone or we're just wasting everyone's time.

There doesn't seem to be any process flow for MRI contrast allergies. They're rare (oh look, more rare shit is happening to me) so I guess the decision was to do exactly nothing for it because rare means it doesn't exist all too often in medicine. Or I'm somehow entering the process sideways and don't even know it.

Anyway, they sent me a bunch of paperwork about the treatment options to prevent breast cancer which includes prophylactic mastectomy and from the research I've read, there's a lot of those happening for CHEK2. 

Bah.

Here's the thing, I am likely in the last decade of being half way functional. I might go longer. I might go less. But I'm struggling more and more with mobility because of my spine (which is holding the line right now) and whatever is going on with my foot (and I have no idea how long that diagnostic process is going to take and also the problem is both joint and muscle which means it'll be a bitch to treat--my expectations of major improvement are low, but I invite medicine to prove me wrong). 

I'm not going to get better. There is no cure. I'm aging at what seems like an accelerated rate. I have a lot of tumors. My lungs are dodgy. Covid will eat me alive. I might hold the line for longer than I think, but my sense is these are the last years where I have any ability to count on anything functioning.

The point being, I'm not looking to spend them doing lots of heavy surgery. If I don't have breast cancer, I don't want a prophylactic masectomy. I don't think I'll have the life span to accrue much of the benefit from that. 

Also, post surgical pain management is a fairy tale, one that lies to patients, and I have so little relief from opiates that I come out of recovery looking like someone who uses a lot of drugs at home, which then means I get treated as an addict the whole time I'm in the hospital while also being told I can't have Advil or Toradol which are the things that actually work for me. And the asthma doesn't like anesthesia. And I have no interest in being sliced and diced and then having to feel like death and also advocate my ass off to improve my care in a system that can't seem to absorb patients like me on top of it.

That's a big ask. It's too much.

But the problem is the MRI contrast allergy, which usually pushes you into a prophylactic mastectomy. Or I take 150 milligrams of prednisone twice a year, once for the ta-tas, once for the liver.  Dude, that's a lot of fucking prednisone and contrast. Jesus. The prednisone is very hard on my liver.

That speaks to the point I'm trying to make, though. I'm getting to where my health is backing me into a corner. I can do x but it'll impact y or I can do z, but it'll impact a. Everything is a precarious tradeoff. It's not sustainable and it's going to eat too much of my time and energy.

I'm trying to find the balance between not being totally irresponsible with my health while also minimizing the disruption, risk, and the number of invasive procedures. There's no map. I don't know what the hell I'm doing. I don't want to accidentally kill or maim myself, but I'm not jumping into bed with the first surgeon swearing surgery will be awesome. 

I know better.

Whaaaat the what?

 More boring minutiae but I think the last two paragraphs are kind of interesting...

Another oxygen drop. I thought I was past these. It's not that it's some awful health emergency, it's that is just sucks me dry. It's like an asthma attack without asthma and it really tires me out. I was useless for most of the day.

One good sign, I did recover enough to get outside toward the end of the day and weed the garden for the first time in a week. And I chased Japanese Beetles around and sprayed a lot of organic stuff to get rid of them and other issues--we have a large field that I've planted around the edges so that's a decent amount of activity.

Man, I'd like just one year where my health isn't a dumpster fire in the spring/summer so I can actually do the gardening as planned. This is year three of garden interruptus. The weeds are about to take over. I hope the stuff I've been doing to make this all more turn key and less labor intensive pays off. Clearly I'm not going to be a master gardener. I need to adjust (and have been adjusting, but it's never enough) my goals to compensate for my health.

I'm eating more. The one thing I'm gleaning from the dietician inspired calorie tracking (which is approximate since none of the foods ever seem to be in the database) is that I have probably been undereating more than I realized. I'm not even sure how. I mean, yes Ozempic, but that's not a complete explanation. 

Have I even been this bad for long? I'm not sure. 

I don't normally track my calories. I usually set up a menu plan and then follow it so I don't have to do that.

But I got to the end of the day yesterday and had only had 900 calories. Which isn't right. Pushed it to 1300 and called it good. 

As I feel better, I'll start fine tuning the macros. I'm not sure I can eat like the dietician wants, but I will track it and evaluate and see what there is to learn. However, right now I'm not being too strict, just aiming for low carb-ish until I'm out of whatever this hole is.

My teen is horrified by all the tracking. Just horrified. It feels like an eating disorder to her, which who knows, maybe our culture has crossed the line. I'm not particularly interested in doing any of this, but my health and the fact the technology exists push me there anywhere.

I explained this ability to micromanage your food data like you have OCD is new and only because of smart phones. Then I tried to explain ancient weight loss techniques like Richard Simmons' Deal a Meal and Weight Watchers points and the grapefruit diet. 

And the teen was just...whaaaaat the what. Same, girl, same. But for different reasons.

Oh, Right

 I forgot.

This kind or rapid weight loss has happened with an adrenal crisis. That was a pound lost every other day up to ten pounds. This has been faster.

In theory, it couldn't be that. In practice, who knows what my body is capable of?

I have been a bit hrmmm about my adrenal glands lately. Just an intuitive sense. Meaningless.

But you know, probably not the worst idea I've ever had to check my am cortisol.

The fatigue fits. Like a glove. I'm whatever is slower than a sloth would be. Comatose?

I'll probably do it out of pocket. None of my doctors know me anymore and I don't have the energy it will take to persuade them I'm not a lunatic.

The Looming Horizon

 I lost ten pounds. In six days.

That doesn't happen unless whatever illness is severe.

But I'm not really sure if this was all that severe.

And that kind of illness associated weight loss is very rare for me. It took me several months of sub 1000 calories with the initial liver implosion to lose 15 pounds. I once had an asthma episode bad enough to knock off 12 pounds in two weeks.

It has been bad though. I don't know if covid is compounding things, but the exhaustion is really awful right now.

I wish I knew what's going on. I have a hepatologist appointment in a few months. While peeing blood confuses things, it seems to be done now and I think it makes the most sense to see what the liver is or isn't doing. 

I had 800 calories for breakfast. Feeling queasy now. But I'm working to stop the starving.

If things keep going like this, I'll zombie shuffle to the PCP and see what things they think might be important to do sooner. If anything. Usually when shit goes sideways, medicine's gut instinct is to deny deflect delay dismiss and damn me to a poorer, more invasive outcome.