One of these sorts of videos opened with me reading the inscription for the gates of hell from Dante's Inferno. At that point, not quite a year ago, it felt like I kept finding new depths for how bad things could go in my medical adventure. So just one example from the entirety of last year. I finally got in with my new general practitioner or GP after they lost the original appointment my case manager had made for me. Whoops.
Only to find out that GP is terrible, telling me to my face. You shouldn't be in pain. Terrible.
I'm not going to rehash the whole thing here. Watch that video if you're curious for that. Bottom line, it could always be worse.
Well, new year, new insurance, new doctor. The good news is things seem to have finally stopped that just constant downward trajectory. The bad news is I've entered into a different existential space.
Medical limbo. So let's talk about how we damned end up here. the systemic forces that keep us here, and some of the consequences. This video made possible thanks to the continuing support of viewers, patrons, and PayPal pals like you.
Really, these videos and this channel wouldn't be possible without your guys'support, so bottom of my heart and a furry belly, thank you. And it's open, so you can join whenever you get. All the kitties.
Oh no. Oh no. Hi, welcome back.
I'm Cass, and I will be the Virgil to your Dante as we explore this part of medical hell. I am a cognitive psychologist by training, so we will be dipping in our brains wherever we can here, but I'm also somebody dealing with assorted chronic issues, so have an ever-increasing lived experience for this stuff. There's a kitty. So much so that I had to delay filming this video a week.
The day I was set to film this, originally a week ago, my body decided it was a great time to have full trigeminal neuralgia pain flare like all day on top of just hitting me with weird recurring pain spots I have and passing out in my chair levels of fatigue. And the day after that, and the day after that. Then it kind of started getting better but I'm still not 100%. A video on medical limbo being delayed by chronic health conditions. It cannot be said that the universe doesn't have a sense of humor, dark and twisted as it may be.
Anyways, we're going to cover three main parts in this video. First, what is medical limbo? Let's define it.
Second, the sorts of things that can put a person here, including doctor biases or just the way medicine works. And finally, what it's like living in limbo and some other closing thoughts. So... let's start with what I mean by medical limbo.
I initially thought this was going to be pretty straightforward, but it can actually mean a couple different things. It can refer to a gap in health insurance coverage, which is also a pretty damn state to be in, hoping that nothing bad happens to you until coverage picks back up lest you fall into financial ruin. Or the term can be used for people who are stuck in intensive care settings for long stretches of time, on the order of months, if not longer. One funny thing it can even refer to is a thing to put over casts in the shower.
You know, a limbo. But the medical limbo I'm referring to is captured by the metafilter and some other search results. This is the temporal gap between when symptoms show up and their cause is identified, at which point some sort of next step becomes apparent.
Being in medical limbo sucks, and not just because you don't know what's wrong with you. If you've ever turned to Dr. Google and were referred out to any of the specialists, Dr. WoveMD, Dr. VeryWellHealth, or any of their colleagues, you've probably seen the stuff that comes at the bottom of the entries. Preparing for your appointment.
Have a friend or relative go with you to help remember what is said. Make sure you have a list of symptoms, including things that seem like they're unrelated and when they started, as well as other things you have going on. Some questions you might want to ask are, what might the cause be? What tests you might need, what treatments there are, and how to manage everything. Don't hesitate to ask other questions.
You can expect your doctor to ask you questions too. What is up with your symptoms? So you do what it says to do.
You have your comprehensive list of symptoms and start dates, and if you've been at it a while, you might have something as beastly as mine. And if you have certain variants of the extra gene... You might have even thrown it into a LaTeX file because the previous word version just wasn't cross-linking right and updating and it was a pain in the ass, and even left it in the default TeX font to give it that extra little impact of medical authenticity.
You do your research so your questions are specific. If you have some background in biology, this might involve diving into the medical literature. You try to have all your notes and thoughts in order so you can answer those doctor questions. You might even have a little briefing session before the appointment so the person going with you knows what your goals are. And then you walk into the appointment, document in hand, eager to discuss, but you aren't met with a doctor wanting to have a discussion about your symptoms or concerns.
They actually don't seem too keen to ask you many questions at all. Instead, you may be argued with about whether or not you are actually experiencing your symptoms, or if your concerns are valid. The tests which could be ordered are withheld, because your symptoms are not specific enough, or They aren't severe enough the moment you're standing in front of the doctor to warrant all the hassle of writing up the test.
Because, of course, they can't believe in something that they can't directly witness in front of them for the 30 minutes you're standing there, if that. You might be told that they're not going to find anything in those tests anyways, or that tons of people have a positive test result in some way that you have, and they're fine. Gatekeep Gaslight General Practitioner.
This is the contradiction or... paradox or whatever you want to call it of the modern medical system that I and many others have run into. It's on the patient to show up to the appointments with these symptom pieces of their health puzzle, and it's supposed to be on the doctor to help the patient figure out how those pieces fit together.
Instead, many doctors, possibly because of the impossible time constraints put on them by their bosses, possibly because of apathy, possibly maybe even because of ego, don't. So now the patient is stuck. They're still experiencing the symptoms, but now they're just left hanging with them. If you're lucky, you might be in limbo waiting for a specialist appointment half a year away, but there's still the downplaying dismissal this bitch not my problem by the GPs.
Let's look into what's driving these somewhat opposing forces. The quote on that title card comes from advice I was given last year by one of my care managers, after my concerns were flat out dismissed by a neurologist. That I just need to stand up for myself and what I need harder.
Like I hadn't been advocating for myself since this started almost 20 years ago. Heaven forbid I'd be a little bit tired of being the motherfucker trying to swim upstream all the time. That maybe I could use a little bit of help from somebody in a boat.
The idea that people need to be active in their healthcare decisions and planning isn't just coming from some bureaucratic dystopia that's trying to shove all the responsibility off onto patients, at least. Yay? Jargon incoming, don't worry, we'll break it down.
Generally, if people have an internal locus of control orientation over how much control they have over their health, they're more likely to engage in preventative measures or health-boosting activities. Now, when we're talking locus of control, we're talking about where a person feels like things are being controlled from. An internal locus of control means a person feels like they are the agent causing things to happen in their life. An external locus of control means a person feels like things are happening to them because of external forces.
There's also a subtype here of chance, where it just sort of feels random or roll the die, flip the coin for what happens to them. Now I'm going to add an interesting little wrinkle to this dichotomy. The internal locus of control being more beneficial to a person's health behaviors may be more true for acute issues than chronic.
For chronic conditions, it may actually be better for a person to have an external locus of control. For example, in multiple sclerosis, a progressive neurological disease where a person's immune system starts attacking critical neural infrastructure, an external locus of control has reportedly been associated with a better self-reported quality of life. And when you think about it, this does make some sense.
On some level, chronic conditions are out of the person's hands. Their body doesn't care how well it's being fed or rested, it's still choosing violence. Making peace with that and moving on may be the healthiest way to cope.
Back to me. Because I feel like I'm the only one who gets shit done for my health, that I'm having to force doctors to do anything, I somewhat have an internal locus. But as with that chronic conditions note, I've also sort of carved out the parts that I do actually have control over. Like this trigeminal nerve is going to do what it's going to do.
It's like a cranky toddler. I think I have a pretty good handle on what's going to keep it happy, but sometimes it's just gonna throw a tantrum. A painful, painful tantrum. But all of that is butting up against the absolute resistance from outside.
There is only so much I can do when the reality of the situation is the external medical system is what's holding me up or actively fighting against me. I'm going to throw some caveats in here before we get to the meat of this section. So I guess this is the In fairness, appetizer.
Big picture, I trust the scientific medical endeavor. I'm not intending to turn this video into a discussion on bioethics because it's a pretty open secret the amount of shady research that's been done in the name of science. And talking about that would derail this video, so just take that point as acknowledged. My point here is I trust the research that provides diagnostic and treatment information. In this video, I am not advocating for people to go searching down alternative medicine rabbit holes, especially as a substitute for conventional medicine.
Absolutely not. That said, at this point I can definitely understand the temptation to do so. On one side, you have everything I'm talking about in this video and all of the frustration and uncertainty that goes with it. On the other side, you have people who seem interested in helping you, telling you that they can treat if not cure what's wrong with you. Year after year being worn down by the doctor man, embracing the woo can be really tempting.
The medical system can work well when the diagnosis is straightforward. A person walking into the ER with a broken bone is probably going to get the treatment they need. Although even with that example, I can think of a friend who broke his collarbone who was initially sent home with orders of rest by the ER because they didn't think it was necessary to do an x-ray to see if it was broken or not.
So I'm already failing my script reviewer's request to Not just shit on things. But even that eventually illustrates the system working. Once they figured out that was broken, treatment was straightforward. Related to that, Chubby Emu, MD, has loads of videos of people presenting to the emergency room with symptoms and the process of figuring out the cause and treatment, with interesting explanations for the what's and why's of everything.
Good stuff. But bodies are complex, and troubleshooting them for more complicated health problems is rarely easy. Some conditions can be found with a blood test or diagnostic scan.
A lot can't. Adding difficulty onto that, the diagnostic process itself can be fuzzy. Some things that seem like they should be rather black and white aren't.
Like, there doesn't seem to be a universal standard for normal ranges for some of the blood test measures. So for instance, my creatinine levels and red blood cell count are on the high end, sometimes peaking into officially high from the labs. But those labs are using one range of normal values.
The CDC, Mayo Clinic, or specific disease websites have different ranges. So my values may be clinically high, they could just be on the high end, or they could be fine. The same value is indicating different things depending on what standard you're using. Getting past that and into making a diagnosis, there can be point systems, where a person needs a certain score to meet the diagnostic criteria, or logic tables.
or just symptoms plus at least however many other conditions. And then a person could meet most of the diagnostic criteria, but be missing a key feature. For example, a lupus diagnosis requires the presence of anti-nuclear antibodies, or ANAs. But some people who are eventually later, much, much later diagnosed with lupus, have atypical serology and be missing those antibodies.
Getting a proper diagnosis and treatment is going to be much more difficult because the criteria are working against them. A consequence of these diagnostic criteria and their inherent rigidity is that a person could be feeling unwell, trying to find out what's wrong with them, and functionally have some condition, but until they accumulate enough points, as far as the medical system is concerned, they don't have the condition. Said another way, the development of a health condition may be a gradual continuous process, but on the paperwork, medicine side of things.
It can be a more discrete binary, you don't have it, and then you do process. And some doctors are willing to work through that ambiguity. Try treatments that would be a good fit if the person met the diagnostic criteria, especially if they're relatively low risk or non-invasive, but it certainly isn't a universal trait. Okay, hopefully that hors d'oeuvre didn't fill you up too much.
Time for the main course. There is a long-standing idea that doctors know best, that we need to put our blind trust in them as we metaphorically to literally put our lives in their hands. And if the last couple years have taught us anything, some people could err more on the trusting experts side of things instead of the research they found on whatever social media site. But those sorts of edge cases don't necessarily mean that the doctor is omniscient when it comes to your health. The modern general practitioner under many U.S. insurances.
is having to act as both a doctor as well as a gateway and gatekeeper to the broader medical network. This means they are functionally in charge of deciding when a problem is worth referring out to a specialist, but this also means that they are the ones who should be integrating what specialists are saying for more complex situations. situations, and this can lead to problems. It has been several years since my primary care provider, PCP, has talked to me about how a specialist appointment went or what a certain test indicated.
And it was my doctor nurse who earned that title because he was a registered nurse practitioner and the only healthcare provider in town who would take me on as a patient. The other doctors in town rejected me. Trigeminal neuralgia?
Percocet? Nope. Every.
PCP since then. All six of them. I've been the one to bring up the test results or specialist notes, which they then read in front of me in the appointment if they look at it at all.
Some I'm willing to be more charitable and assume that they're just not given time to prep between patients, but others, I don't think they could be bothered. Whatever it actually is, this tells me that I am the one who's now in charge of integrating these different streams of information, and at figuring out what trees I should be barking up to tell them where I need referrals to. But that leads us to the next problem. There's a general vibe with doctors, where they're at the very least leery and kind of suspicious of information patients come in with, be it potential treatment options or diagnoses. Going back to people doing research by way of podcasts, I understand the skepticism.
I really do. But patients are the best expert on themselves and what's going on inside their body. You would- think that a patient's input on their symptoms and even what Dr. Google spit out as a possibility should at least be entertained.
And it's not like I haven't seen some doctor screens googling things themselves, like a couple times at the ER, you can see, and they were googling this certain nerve pain because it's weird. I get it. I understand bodies are complicated. There's a lot of things going on. There's a lot of things to remember.
I would prefer somebody check and double check and look into things and be curious about it instead of just assuming that they can diagnose it on the spot and possibly be wrong. Ignoring patients being ignored, for now, doctors typically aren't given the time anymore to be well-versed on what's going on with any particular patient, so critical information could be slipping through the cracks. For example, my medical situation could be considered, and pardon the medical jargon here, a hot mess.
If you only look at one piece of the puzzle, things might look more fine than they are. Like, sure, a positive anti-nuclear antibody or ANA result can happen in people without an autoimmune situation. Going off the high range for the estimate I saw online, 15% of people will have a positive ANA and be totally fine, as my new GP tried to assure me last month in my intake appointment with her.
But I also have a sun and heat sensitivity, what basically amounts to a cold allergy, sometimes bad fatigue, and so on. But she didn't ask for clarifying information about the other things, she just latched onto that small piece she had and proceeded from there. Which brings us to, even with all the info in front of them, doctors can make mistakes.
Possibly out of cognitive biases like premature closure, anchoring, or the confirmation bias. Then refuse to adjust course. Let's talk about these biases. And just as a note before we get into them, they can kind of be intertwined or overlap with each other, especially when it comes to the impacts on medical decision-making.
When we're coming into making a decision, we frequently will estimate an outcome based on any number of factors. Anchoring occurs when we have difficulty adjusting far from the initial estimate, even if it ends up being completely wrong. So in my example, my doctor may have anchored.
on the 15% chance I don't have anything autoimmune going on and is resistant to changing that opinion. Premature closure comes more from social psych than cognitive, but it's a related idea. In this case, a person arrives at a decision and closes the metaphorical door on other possibilities, not even wanting to hear other evidence or support for the others.
Again, my doctor may view me as healthy enough and may be resistant to incorporating all the blood work and symptoms inconsistent with that view. Then there's a confirmation bias. This refers to our general tendency to seek out evidence supporting, or confirming, our sense of what's going on or a decision we made, as opposed to information that might contradict it.
On the doctor's side of things, this can happen when doctors arrive at a diagnosis, then gather information that would support that diagnosis rather than check for symptoms or test results that would indicate it isn't what they thought it was. So in my case, the positive ANA was probably compared with some other negative autoimmune test results, confirming her belief I'm fine instead of running a couple different follow-up tests which could provide more information and i'd really like her to do before i see the rheumatologist so i don't have to wait another half year for all of that to be processed but it's not just doctors who can fall prey to the confirmation bias Patients can too. Again, illustration by way of me example. The previous diagnosis tree we were barking up was multiple sclerosis, or MS for short, because some of the symptoms I have fit.
And so I was sent the MS specialist, we talked about the symptoms, and they read through my symptom thing, which I am forever grateful for. And we talked about the symptoms that fit, and the ones that don't. Like my brain scan.
I don't have the characteristic lesions that you would expect for MS. It's still lesioned, but it's the wrong kind of lesions. Honestly, all of this is part of why I have a differential notes section to my write-up, just so all of this information is on hand should a doctor ever care to use it. There are other biases or cognitive shortcuts that can lead a doctor away from an appropriate and accurate diagnosis, such as implicit biases that impact the care of women, people of color, and or people above average weight receive, but hopefully these illustrate the idea.
The bottom line here is if a doctor comes to a determination about a person's diagnosis, it can be pretty difficult to convince them otherwise. If you want to drive that dagger in just a little bit deeper, this is a known issue in the medical community. There is no shortage of continuing education resources or published articles trying to spread awareness and Just get people to be careful about these sorts of things. Speaking of known issues, potentially driven by cognitively biased decision-making by doctors, something that can be included in news stories when a celebrity gets diagnosed with something is the delay in getting that diagnosis.
As with Selma Blair and MS. This delay between when symptoms show up and finally getting that best fit diagnosis is known for many conditions. And before we get into the specifics, something to keep in mind here is we're talking about an average delay. So for some lucky people, it'll be quicker, but for some people, it'll be longer than average. For MS, the published delay is on the order of a decade. For endometriosis, the estimate is roughly six years.
And for lupus, the delay in the UK is on average almost seven years. That last reference hopefully includes advice to doctors to listen and believe their patients on symptoms they're bringing up as ignoring or dismissing them does have a fucking health cost to the patient, which could have been avoided had they been listened to in the first fucking place. Yes, I'm mad. Which is to say nothing of the psychological toll. Especially when doctors misdiagnose or misattribute those very symptoms to a psychological cause, as I had done to me last year.
Somehow, a severe trigeminal neuralgia flare was labeled moderate depression. One story from that lupus paper stood out to me. The rheumatologist sent me to see a psychiatrist because I complained that I felt ill even though the blood results were okay. The previous results were positive. Psychiatrist said I was okay and I should get a new rheumatologist who knew more about lupus.
Ugh, the number of times I've been told to find a better doctor, case manager, specialist in the past decade is too damn high. Back on point. People experiencing delays and getting a crucial diagnosis is a known problem.
One that can be laid squarely at the feet of doctors not listening to their patients or taking their symptoms seriously. What the fuck is a patient supposed to do about this? Well, wouldn't you know it, there's a Society to Improve Diagnosis in Medicine, and they have a handy-dandy list that's supposed to help. First, ask the doctor what it could be, or what else it might be. You know, I'm just gonna pop in here and say from personal experience, this advice doesn't work.
I've gotten shrugs from specialists with no indication of who to talk to next, even when asked, and I've been told by generalists that everything's fine. These sorts of questions don't work when the doctor's already checked out because it's not their specialty or they're just not engaged. Try to find a medical practice you can trust. Right, yeah, I'll just do that because my time and money are unlimited and it's not already hard enough to get in to see people.
In my experience, this is a systemic issue. It's not just isolated to a doctor here or there. The one doctor I've had who would take the time to have these sorts of discussions with me, his contract was not renewed by his bosses because he wasn't getting through enough people in a day.
Ask for a referral or second opinion. Again, time and money argument. But also, how are you supposed to get a referral from a doctor who doesn't believe you or your symptoms? I can't get a referral for coordinated care despite being approved for that program last year.
Even after I told her that. And I'm just having to try to make my peace with that because she's not hassling me about my pain medication. Figure out how to best describe your symptoms. Clicking.
True here, and it says to write down the full what's when's hows and practice saying them so it comes out quick. And this falls apart when you have any sort of non-trivial list. Like, my second appointment with my new GP, this time in person, she was still kind of pushing me to drop my autoimmune concerns, so I pushed back. That I have more wrong with me than her misunderstanding of my experienced pain.
So she asked me to talk about that. So I started going through this document, especially because she wasn't going to take it from me. Got hit with some, oh, that's...
non-specific. More hints that I should drop the autoimmune concerns because some of the test results were fine. Got hung up for a bit on her answering a question I wasn't asking until we finally get to the pictures.
That caught her attention and it finally slightly changed the vibe in there, but it was slight. We went from her seeming to think I didn't need to see the rheumatologist at all to absolutely needing to show him these pictures when, if, that appointment finally happens. Quote, learn what tests should be done routinely for you, and if they refuse, find a new practice.
That link doesn't go to anything useful, by the way, just a summary of a report of how healthcare could be made more equitable. Yeah, no. For one, when we are out into the medical weeds, the types of tests you need probably aren't going to be routine.
Second, this just doesn't work. I have a list of some blood tests that could be run to give the rheumatologist a more complete picture when I finally do get into that appointment, but I couldn't get the doctor to sign off on them. That's for the specialist to decide. And it's not like I was asking for the world here, just a couple other autoimmune blood tests and a more comprehensive kidney test to just see what's going on, but I may as well have been asking to go to space. Quote, speak up.
Just tell the doctors what's wrong with you. Don't be afraid to talk about your symptoms. Quote, eventually. That's really fucking easy to say if you haven't been medically gaslit to keep your mouth shut for years.
It's like the advocate for yourself advice I got from somebody who theoretically was supposed to be my advocate. Don't go thinking you have some rare disorder you haven't been diagnosed with. Be polite, but firm. With everything I've said up to this point, I'm pretty sure I don't need to say why this last item, why this list, is pissing me off. It's like, oh, if the doctors aren't taking you seriously enough, it's because you've been doing it wrong.
So, you got your symptoms, which may have been going on for some time. Doctors who aren't taking them seriously for whatever reason dis- despite this being a known issue in the field, and the advice to just keep trying. They'll maybe eventually listen. Someday. Well, I didn't call this limbo for nothing.
I am stuck. My new GP, while thankfully not hassling me about the pain medication prescription, tends to err on the side of the everything is fine mindset. In the intake appointment, which happened over video, she anchored on me having constant widespread pain, which I'm not sure where she got that idea from. She also tried to assuage my concerns about the positive ANA result, saying that tons of women will have a positive ANA test and be just fine.
Missing the part where I'm not just fine. Week later, had the second appointment in person this time, and she didn't want the write-up from me and rejected it. in the nicest way it's been rejected so far so that's something. The appointment was to talk about pain I get in my ribs in the back.
I'm not sure what's up with it but of course it's going off right now. Majority of the appointment where she was looking at me aside from listening to my lungs was spent on my cold ass hands. Significant blood work results were fine no cause for concern.
I tried to ask further about the creatinine levels and maybe doing a 24-hour test but got cut off. It was fine. Again, I tried to say it doesn't seem fine, but again, I got interrupted this time with an explanation of what creatinine is, and some people have higher levels of whatever, and I was probably dehydrated, so it's fine.
I did clarify I almost certainly wasn't dehydrated. I had had a liter of water in the hour and a half before that blood draw. I wasn't dehydrated.
I could have tried to explain that while my memory for my physio class isn't perfect, I do remember that problems with the kidneys can somewhat be compensated for by increasing the fluid throughput. And hey, if I don't drink three liters of water a day at least, I don't feel right. And sometimes kidney problems can go with lupus, as does renalds, sun and heat sensitivity, positive ANA, etc, etc.
But you go through this enough times and you sort of have a sense on when you aren't going to be heard. That said, in her exam with me, I brought up the chill blings I had on my hands at the time, mostly in an effort to get her to mark it on the chart, which she said she would, but they're not on the chart, so whatever. She couldn't get over how cold my hands are.
Like, yes, they are very cold. They are clinically cold even. While there, she noticed some red splotching is happening on my neck and asked if that's normal and finally redirected her to the picture of the red thing that comes and goes on my face.
Like I said earlier, to her credit, that did seem to make an impact. Although just that I should show it to the rheumatologist when that appointment happens. An appointment I'm not even sure is going to happen at this point because the chaotic uncertainty in my life is a fucking universal constant.
I think people new to hearing about my situation will underestimate the force of this. Like, surely I must be exaggerating things. It can't be that bad. I can't be that unlucky.
And then the things just... Pile up and keep piling up and don't stop. Like, my new case manager, I think, is starting to grasp this.
My rheumatology appointment was made back in October after a referral from my old GP on the old insurance. So new insurance, new referral, right? Get all those ducks lined up. Intake appointment with the new GP.
She sent out referrals to pain management and the rheumatologist. Pain management got back to me relatively quick. And after some confusion, because they thought I was a new patient and needed to make an appointment, I was like, no, I already have an appointment in March. Like, we're good. That was good.
And the second appointment with the GP, she let me know that the rheumatologist had rejected her referral. No reason given, which I guess is weird. They usually give a reason. She offered to send me to a different rheumatologist, but I was like, hang on. I have an appointment with them already.
I just need insurance to be okay with this. Her response was just... a shrug and follow up with them, she guesses. So I sick my case manager on the situation because, as I mentioned a little bit earlier, the GP doesn't think my case is complex enough to warrant me being referred to coordinated care. So the whole reason for us switching to this insurance is out of reach again.
So as a way of trying to cope with that, I called and got myself another case manager. From what she could see, the rejection was actually for my initial referral back in October. It was a rejection for the doctor I had initially requested, which fine, he is beyond overbooked.
In scheduling they were able to find me a different rheumatologist and booked me that. First available was still April, but I have an appointment on the books. Again, reiterating that there's no reason given for this rejection.
So her official advice to me, which I at least have in writing because it's in a message, is to just go in April and figure out the insurance part later. Cool. I love being on the hook for half a grand to see a rheumatologist after already having to have been on the hook for over a hundred dollars for my pain medication refill because apparently I needed to get prior authorization for it.
Ideally, this is the sort of thing a GP would know and send off the prior authorization for, but to be fair to her, looking at her bio, it looks like she is right. out of her residency and this is like her first real job. So she's probably learning a lot of the bureaucratic insurance bullshit through me.
And now an addendum from this extra sick week, uh, the pain in my back ribs was bad enough. I went to urgent care. Love video visits.
I love that that's a thing. Um, talked with the doctor, described my concerns, got a urinalysis done, and hey, good news is at least for the measures that they did run, my kidneys are fine. Med news is... don't know what's causing this. Fucking typical news was the urgent care doctor, who did seem to care and listen, suggested I look into Chinese or Ayurvedic medicine because Western medicine only really becomes useful once a disease date has reached a certain threshold.
Which, cool. Kind of funny hearing one of my arguments from this video being said back to me by the doctor who's treating me, but... You would think a doctor associated with fucking medicine wouldn't recommend those sorts of things. But all of that is just the latest snapshot on the medical drama that has engulfed my life. I feel like I'm drowning, just doing everything I can to keep my head above water and I'm exhausted.
Even though I try to keep this from happening, it will just consume my mental and emotional resources. It's always in the back of my mind, if not more towards the front. that I need to document things, pay attention to my body, maybe do some more research, and maybe this time I'll get lucky with the keyword and find an answer that will release me from this purgatory.
One of the frustrating things with medical limbo is if things finally do reach a clinically significant threshold, it may be after a point where damage, permanent damage, is incurred. I feel like if I could be listened to now, we could do some other tests and see if there's something going on. And maybe there isn't, and I could at least feel better, but maybe there is something going on and we could do something, anything, to try to head off damage before it happens. But... I am not part of the 1% who will have doctors to just do that.
I know too many stories from people who are either dismissed or ignored and are now suffering the consequences of that. A friend has permanent hearing loss because Kaiser doctors fumbled enough calls when he was in the ICU. A loved one probably lost a couple years because he trusted his care team on their decision that he wasn't showing the early signs of Parkinson's, despite my pleas for him to get a second opinion. Now, when the symptoms are too obvious to miss, now is when the diagnosis is made. Even here on YouTube, Abelina Sabrina has possibly lost the ability to have kids and almost fucking died because she wasn't taken seriously enough until it was almost too late, and even then they tried to send her home.
We're talking about this because I'm fucking tired of being made to feel like I'm overreacting and having my concerns dismissed out of hand. We're talking about this because I don't want to be stuck in limbo. Paradoxically hoping for things to get worse just so I can get some progress on figuring out what's wrong with me.
We're talking about this because it's been talked about since at least the 80s and things haven't improved. If anything, it seems like it's getting worse. We're talking about this because I want things to change.
And this is the only platform I have where the damned can be heard.