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6:48pm
August 2, 2015
things about Hufflepuffs #468
Hufflepuffs with animal allergies are quite likely to have a “pet” plant.
This Hufflepuff with a severe cat allergy (as determined any time in my life I’ve ever been tested, as well as by the amount of Benadryl I go through)… still has a cat. And I suspect that may actually be a weirdly Hufflepuff thing as well.
Although I found out that actually unless your allergy is so severe as to be life-threatening, it can be more beneficial to keep the cat around and treat the aI still couldn’t breathe through my nose for the first several months of living around dogs. And I lived around cats all my life, but not indoor cats until I grew up. We found out I was allergic because when we brought the cats indoors, I’d fall asleep, so my mom had me tested. I was furious at the doctor because I loved cats so much and because I was a kid and didn’t know that the doctor not telling me wouldn’t have made it go away.
I had actual reason to be furious at an allergist as an adult who pretty much refused to treat me unless I “got rid of” my pets – and it turned out that the symptoms I had gone to see him for, weren’t even the result of allergies to begin with, but of a really bad lung infection that was mistaken for an asthma exacerbation that was being blamed on my allergies because what else was there to blame? But at any rate, I did some research and the allergist’s recommendation to “get rid of” the cat apparently is not even considered best practice for people with allergies, even severe allergies, as long as they’re not life-threateningly severe allergies.
Which mine aren’t and never have been – both skin and blood tests have consistently shown an allergic response to cat saliva that’s technically well into the severe range, but my actual physiological response to that isn’t to keel over and die or stop breathing, so I’m not in the category of people where “getting rid of” a cat would even make sense. My allergies have actually been improved somewhat by living with a cat, which is one reason it’s not considered good to just avoid the animal you’re allergic to (unless it’s some kind of obscure animal you’re never going to see) – it just means your response will be more severe when you do come into contact with that animal.
So that (and the fact that I love Fey and would probably not mind living with her even if it somehow did shorten my lifespan somewhat, which there’s no evidence that it does at all even a little, mind you) is why I’m a Hufflepuff with a severe cat allergy who lives with a cat. And even sits here typing this with this 16-year-old cat sitting on my chest with her fur right in my face, blocking the fan, on a hot day. She’s lived with me ever since I moved out on my own for the first time, and she’s going to go on living with me until one or both of us dies. She’s one of the closest friends I have in the entire world, and she knows things about me that nobody else knows. I sometimes have a sneaking suspicion, however, that she thinks of me as sort of like a big, none-too-bright kitten who’s never had the decency to move out in her old age, and doesn’t know enough to come in out of the rain and therefore has to be looked after all the time. People always act like the cat is the “baby” in the relationship but I’m pretty sure the reverse is how Fey actually sees it (and I’m not arguing too hard, I call her Grandma Fey a lot of the time).
But I love the idea of pet plants. Although I have plant allergies too, so that’s not necessarily going to work out any better. I guess it depends on the plant – or the animal – and the person.
139 notes
1:38am
July 27, 2015
When a doctor didn’t believe me but then test results proved I was right…
whatshouldwecallchronicillness:
[animated GIF deleted because it was giving me a headache, even though it was half the point of the post, sorry I just couldn’t reblog it… it was basically a guy looking satisfied with himself, but his head jerking over and over was messing iwth my brain functioning]
This happens to me ALWAYS.
ALWAYS.
I have so many test results proving myself right, and yet some doctors refuse to learn to trust me despite my rather extreme track record in this regard.
Just recently I said I was bleeding out of my stoma to a ridiculous degree. Showed the guy replacing my tube that the toilet was full of blood, told him there was at least ten times as much blood as was in the picture. He told me the blood was actually bile and that I was not bleeding. A week later I got an endoscopy that showed an ulcer with a giant blood vessel right in the middle of it, spewing blood and blood clots. But I know that even if I go back to this doctor and tell him this happened, he’ll laugh at me at best. Because he does that. He laughed at me when I said I knew the difference betwee bile and blood, and then he literally refused to respond to anything I said the entire rest of the time we were in a room together. Literally just ignored eery word I said as if I wasn’t talking. It was incredible rudeness. But it seems like everyone around him goes “well that’s just what he’s like” so it’s supposed to be okay, there’s like this culture of excusing it because he’s a doctor or something. IDK. I’m always afraid of running into him because I just get sick of his bullshit attitude towards me, which has always varied between condescending, contemptuous, and hostile.
Does your hospital have Code/Condition H/HELP? (It varies in terminology?) Basically, if you can’t get your doctor to listen to your concerns, you (or your family) dial the in-hospital hotline and report the code, and you’re seen by designated responders who address your concerns immediately and investigate why your doctor was ignoring/dismissing you. I’ve never had to use it, but I was made aware of it last time I was an inpatient.
It has Patient Relations, which I’ve had to use multiple times, usually when I was far too out of it to actually call them myself, so my DPA ended up doing it. It was sometimes an extreme struggle even then. Luckily my main doctors all believe me about stuff – they’d be stupid not to at this point, as I said I have so many tests backing up so much stuff I’ve said that they no longer doubt anything I say. But when I end up in different departments of the hospital, I often run into trouble of various kinds. And sometimes it’s trouble that would not be worth calling Patient Relations over. But sometimes it’s life and death stuff. And I never know which it’s going to be. But I have never been able to successfully contact them myself, it’s always been done for me.
One example was the time they said that because I had a developmental disability, I would need an outside staff person with me 24/7 before they’d agree to admit me, even though I’d been hospitalized there many times before and had never caused any trouble or needed anything that different from any other patient because of being DD. My DPA called Patient Relations and I was admitted immediately. But then they immediately started trying to throw me out, and it took the combined efforts of several of my regular doctors to keep me there. And then it was a fight to get life-saving medical treatment, where even Patient Relations couldn’t help us and we had to turn to the Internet and the threat of bad publicity. (They conceded, when pressed, that I needed the treatment in order to survive. They just kept coming into my room every day, several times a day, trying to persuade me not to accept the treatment. Once people started calling the hospital, they suddenly said “You’re getting your feeding tube tomorrow.” And I only got one more bizarre visit trying to dissuade me, and even that was half-hearted on the part of the doctor.)
Then when I got the feeding tube and there were complications, they ignored my pain levels (because a part of the tube was lodged in the wrong part of my body, causing excruciating pain any time I moved at all) and ignored the fact that something could be wrong, and treated me like I was just complaining too much and that if heart patients could stand up then I could surely stand up even though I couldn’t roll over in bed without sobbing my eyes out. Meanwhile my roommate got tons of pain meds thrown at every twinge she had no matter how minor, and told stories of a procedure similar to the one I’d had, and talked about how wonderful it was that any time she squeezed their hand they’d give her more anesthesia so she wouldn’t feel the pain. (I had my procedure screaming in pain due to non-working anesthesia and was simply told “hold on” for the entire hour or so the procedure took. I was also told “You won’t remember this later so it doesn’t matter that it hurts.” I still remember that, all of it. Nobody gently held my hand and told me to squeeze if I felt pain so they could adjust the anesthetic. They just treated me like my yelling and squirming was bad behavior.)
And that was all in one hospital stay, a couple years ago. So Patient Relations was helpful for parts of it but couldn’t do anything about other parts. And this is far from the only time I’ve had to involve Patient Relations. There was the time they decided that I could eat just fine, gave me a giant fish dinner, and I puked it all up of course, but they said I was good to go home even though I couldn’t keep down any of my meds and needed IV replacements so I wouldn’t die. And then when I refused a med that was on my chart as something I was allergic to, threatened to stick it up my butt if I “refused” it. My DPA called Patient Relations and suddenly I was given a week to recover and start eating on my own, given new nausea meds, etc. (That was my first gastroparesis hospitalization, but we didn’t know back then that I had gastroparesis. They just thought I was randomly extremely nauseated.)
And there was the time I belonged in the ICU – one of many times probably – but my doctor said he would only treat pneumonia, not any of the other conditions I had, because pneumonia was what I was brought in for, therefore… none of my other conditions mattered. (Those conditions were eventually found to be gastroparesis, myasthenia gravis, and adrenal insufficiency, all of which were messed up either by the pneumonia or by the treatments for pneumonia or both.) Nobody put me in the ICU, although they did transfer me to a better ward after someone kicked up a fuss about them ignoring my needs when I was on the cardiac ward (as overflow, not as a cardiac patient – they didn’t like the fact that I was violently ill and making their quiet, sedate ward too noisy – so they simply closed my door and pretended I didn’t exist and that my call bell didn’t exist either). I was severely delirious and in no state to explain everything that was happening to anyone, and I’m lucky I didn’t die. (I know what death looks like, and it was sitting patiently next to my bed for weeks.)
And on, and on, and on. I could tell so many stories, and Patient Relations only helps sometimes, in some situations, to some degree.
11:55pm
July 26, 2015
When a doctor didn’t believe me but then test results proved I was right…
whatshouldwecallchronicillness:
[animated GIF deleted because it was giving me a headache, even though it was half the point of the post, sorry I just couldn’t reblog it… it was basically a guy looking satisfied with himself, but his head jerking over and over was messing iwth my brain functioning]
This happens to me ALWAYS.
ALWAYS.
I have so many test results proving myself right, and yet some doctors refuse to learn to trust me despite my rather extreme track record in this regard.
Just recently I said I was bleeding out of my stoma to a ridiculous degree. Showed the guy replacing my tube that the toilet was full of blood, told him there was at least ten times as much blood as was in the picture. He told me the blood was actually bile and that I was not bleeding. A week later I got an endoscopy that showed an ulcer with a giant blood vessel right in the middle of it, spewing blood and blood clots. But I know that even if I go back to this doctor and tell him this happened, he’ll laugh at me at best. Because he does that. He laughed at me when I said I knew the difference betwee bile and blood, and then he literally refused to respond to anything I said the entire rest of the time we were in a room together. Literally just ignored eery word I said as if I wasn’t talking. It was incredible rudeness. But it seems like everyone around him goes “well that’s just what he’s like” so it’s supposed to be okay, there’s like this culture of excusing it because he’s a doctor or something. IDK. I’m always afraid of running into him because I just get sick of his bullshit attitude towards me, which has always varied between condescending, contemptuous, and hostile.
8:36am
June 22, 2015
Has this, or a similar study, ever been done?
I know that vaguely similar studies have been done with psychiatric conditions. But this would be specifically for physical conditions that can be easily confirmed if you do the right laboratory testing. The conditions may range from rare to common, but should not be, in and of themselves, highly controversial. (1) If they were highly controversial (whether real or quack-created, since both can be controversial for different reasons) that would mess up the experiment. If they were not able to be confirmed by laboratory testing, then that would mess up the experiment too.
So you’d have a bunch of patients go to a doctor’s office. The group you’re actually studying, would be patients who already have a legit diagnosis, through a combination of laboratory testing and symptom history, of at least one medical condition. I’m not sure how the control groups would be worked out, but someone with more brain than me could put this together.
Anyway, they would go in and tell their symptoms, and their histories, to these doctors. The doctors would of course not know whether the patient has been diagnosed, or with what. Then we’d see how many doctors dismissed the patients out of hand, and in what circumstances.
Circumstances I can think of that would be relevant: Being other-than-male, being a person of color, having an obvious developmental or psychiatric disability (or appearing as if you do), mentioning (or having it in a chart written up specifically for the purposes of the experiments) not being believed by other doctors, being poor, not speaking English well or speaking with a thick accent, being unable to speak at all.
And that’s just off the top of my head. Specific variants of the experiment could be created to test those things out. And I know that many of those things have been tested. The thing that’s especially relevant about this particular experiment, however, is restricting it to people who could be easily diagnosed on the basis of a blood test, a brain scan, or something along those lines. Because that makes it especially appalling when you see that a doctor has not bothered to even think in the general direction of said tests. Or has refused to do any testing at all. (Maybe there could even be a variant where, if a doctor doesn’t mention wanting to do any testing, the patient could say “an old doctor had suggested I get Test X done, what do you think?” and see what happens.)
At any rate, I’d love to see a truly complex set of experiments designed to show under what circumstances doctors are and are not willing to:
1. Test patients for conditions that fit the symptoms they are describing.
2. Acknowledge that a patient may have two or more (still easily testable) conditions causing their symptoms, rather than one condition that explains everything.
3. Run more than one test for a condition if one of the tests comes back negative. (2)
4. Delegate diagnosis, or parts of diagnosis, to competent specialists where necessary.
5. Continue to take patients seriously even if they haven’t guessed at the right diagnosis yet. (As in, not write off patients as “hysterical” the moment they can’t figure it out.)
All of these are things doctors should be doing with any of their patients, but my own experiences and the experiences of many other people with long-term chronic illness, especially relatively rare (or simply not well-known) diagnoses, do not bear out that these things are consistently happening for us, even when the stakes are life and death. It pissed me off enough that it was happening to me, but watching it happen to family members and friends pissed me off even more. And I’d love to see what circumstances make doctors take us more and less seriously when showing the exact same damn symptoms. (And I’d love to see the study done on people who are already known to have the conditions, and the laboratory testing that goes with them, so that when a doctor orders tests, they’re getting back genuine results that they then have to think over and make decisions about.)
Oh and all links to medical information in this post are at the Mayo Clinic website, because while I don’t think they’re infallible (and I know in certain areas they can be just as messed up as other medical establishments), they’re generally consistently better at understanding complex, not-well-known, and rare disorders than the average website is. I was very happy when I found out my mom was going there, because I knew that even if they couldn’t find anything or treated her badly, at least they wouldn’t be leading her in the direction of quackery. And also I knew that any results she got from there, would be taken way more seriously by my own doctors treating me for similar symptoms, than if she were just going to her random local doctor.
She and I have, despite having diseases that turned out to be very easily testable when the right tests were done, been put through an unimaginable array of bullshit by the medical profession (as well as by laypeople who Don’t Get It in a huge way) before finally getting diagnosed (and sometimes after as well… she wouldn’t have coded in the ICU last year if they’d listened to her about needing a bipap in order to breathe).
Things are even worse for people with diseases that don’t have names yet, or aren’t yet separated out from generic garbage-pail diagnoses, or don’t have lab tests yet that can confirm or deny the presence of any particular disease.
And believe me they’re bad enough even if you have things that can be tested easily once you know the right test to do. (And wow are tests nervewracking under these circumstances… you don’t want the test to show that you have something awful that’s going to kill you before your time, and yet you don’t want the test to come up totally negative and leave you back at square one with some really bad doctor saying “See, that one test came back negative so you can’t possibly have anything related to Disease X.”) I also notice that things get complicated when you have more than one disease that cause overlapping symptoms (or symptoms that seem to overlap if you don’t understand you’re looking at two or more diseases with slightly different symptoms). Because doctors like things neat and tidy, so they like to have one disease they can trace back other diseases to.
I’ve taken to answering “What is your primary medical condition?” with “Are you actually serious?”
TL;DR: I’d like to see a study that studies how doctors decide what testing to do, and how much testing to do, and what to do with the results of testing, on people who have a seemingly undiagnosed condition – but one that (unbeknownst to the doctors in question) is already diagnosed and can be diagnosed easily using laboratory testing if they only guess the right tests to do, and when to give up a line of inquiry, and when not to give up, and etc. I’d like to see who gets discriminated against the worst in these scenarios, I have my guesses but I’d like to see.
3:35am
June 15, 2015
Here’s a shoutout to the people who have gotten more sick or injured because of doctor’s error. Society puts doctors on a huge pedestal because they save lives but they’re human and they make mistakes. It’s okay that’s you don’t trust doctors. It’s okay if you get scared when someone tells you that you need to go. Your feelings are absolutely valid.
Also shout out to all the people who are suffering or have suffered without treatment because doctors didn’t even believe your symptoms are real, let alone that they have a real medical cause. It’s okay to not trust doctors’ opinions and think they’re just gonna gaslight you or right you off as a drug seeker. Your feelings are absolutely valid.
If your doctor won’t listen or you don’t feel comfortable around them, get a new doctor! Doctors are supposed to work FOR you to get you the help and care you need. If they aren’t then you have every right to be upset and find a new one. You always have a right to a second opinion. What you feel is real.
Shoutout to those of us who have been cycled through dozens of doctors because they consistently refuse to treat you.
Shoutout to everyone who has spent months waiting for an appointment with their new specialist only to get to the visit and be told they can’t help you.
Shoutout to everyone who calls a new doctor every month to ask if they will take you on as a patient, only to be told they are full, don’t take your insurance, or don’t treat People Like You and then get told you are not trying by your other doctors or family because you’ve failed to get in anywhere.
Shoutout to the chronically ill who have been abused by their doctors or therapists consistently their whole lives and still have to go and see them because opting out of medical care all together could kill you.
Shoutout to people who have been raped by gynocologists and forced into invasive exams and reliving trauma because if you try to get out of it you can’t get your medication.
Shoutout to everyone who’s only available support systems believe doctors can do no wrong and get yelled at if you try to talk about your trauma, because you are clearly an outlier, and speaking out gets you accused of hurting other patients by discouraging them from seeing anyone.
Shoutout to everyone who has been accused of faking things despite having a longer list of positive medical test results for the conditions they’re supposedly faking, than the people accusing them of doing the faking – and much of this accusation coming from the fact that you don’t automatically trust medical professionals, and say so publicly a lot, which annoys people who have some weird vested interest in making medical professionals seem infallible.
Shoutout to everyone who has been told that you shouldn’t be allowed to take part in self-advocacy/disability rights unless you show everyone proof of your diagnoses – and then if you do, having even that proof used against you somehow.
Shoutout to everyone who has referred to any doctor as less than perfect, who has then been told something like “You only dislike doctors who don’t tell you everything you want to hear” – by complete strangers who know nothing of your actual medical history or history with the doctors in question. (For instance, I referred to a particular doctor as a jerk because he had tried his hardest to convince me that I wasn’t a real adult, and tried to manipulate my parents into controlling my life in a quasi-guardianship type way, until both me and my parents got sick of his BS, at which point he actually threw a massive tantrum on the telephone when my parents wouldn’t automatically do what he told them to do to me. But apparently the only reason I didn’t like him, according to people on the Internet who knew nothing of this history, is because he preferred using -NOS diagnoses to actual diagnoses (because -NOS “avoided labeling people”…how!?!), even when you met the criteria for the actual diagnosis in question. Which is something I disagreed with him on, but is hardly grounds I’d use to call a doctor a jerk. The best psychiatrist I ever saw had similar biases about “labeling”, and was not ever what I’d call a jerk, even when he was wrong about a lot of things.)
Shoutout to anyone who has ever posted something even passingly negative about a doctor, only to have people online respond in any context with the phrase “the good doctor” (like “Given that you’re probably lying about all this, I think we should hear from the good doctor about this matter before dismissing what he has to say”), used unironically, and entirely to piss you off.
(For context, I got that response when I mentioned that a psychiatrist had unilaterally decided what I was thinking and what motivated me and then written it into my record as fact. In particular, he said that the reason I was upset at a certain point in time was because I wanted to be out on romantic adventures like other teenagers instead of stuck at home with my parents. Which was completely false, but made it into my permanent record as true, because he had a habit of declaring what I was thinking, and then painting it as “We figured this out in the course of therapy,” regardless of whether I had agreed with him at any point in the course of said therapy or not. But apparently I’m not even competent to know whether I was upset about being stuck at home with my parents or not. According to bizarre Internet trolls anyway. But using the phrase “the good doctor” in this kind of context is pretty much always manipulative and nasty.)
Shoutout to anyone who’s been considered a bad patient entirely because a sufficient number of doctors have not gotten along with you for reasons that have nothing to do with what kind of a patient you are or aren’t. Even when you followed their directions to the letter and were as submissive as is humanly possible to be, in an attempt not to be labeled a “bad patient” again. Because there exist doctors out there for whom nothing you can do, save for dying and/or moving away and not being under their care anymore, will ever be good enough, but you have to go back to them anyway because you have literally no other choices to get survival-level care. And for every doctor you don’t get along with, you get a reputation for being “difficult”, even if you have done less to be considered difficult than most patients otherwise demographically similar to you.
Shoutout to anyone who’s ever literally been told, by one of their better doctors, that they were a difficult patient because they were delirious when sick and hospitalized. (For anyone who doesn’t know, both illness and hospitalization are risk factors for delirium, as is previous delirium. So like, hospitalizing someone with a long and well-known history of delirium for being sick and then calling them difficult because of delirium-related problems is a very bizarre thing to do.)
2:52pm
June 13, 2015
So I finally got an endoscopy.
They wanted to do plasmaphoresis, but without knowing the extent of my stomach bleed, they couldn’t. So they finally decided that (now that the adrenal insufficiency and myasthenia gravis have been properly diagnosed) it was safe for me to be put under for an endoscopy, they got a good look at what’s going on in my stomach.
Their assessment pretty much agreed with what I thought was happening: The first time the tube had pulled out, it created an ulcer, with a visible blood vessel opening into it that’s been creating all the blood clots. Then the ulcer never healed because the j-tube was constantly rubbing on it, so I was getting blood clots or liquid blood on a daily basis, but not enough to be worrisome. It could be a problem if they do plasmaphoresis, though.
So they clamped it off, and they’re recommending that I talk to my doctor (yet again, it’s not like I never brought this up ages ago) about having a j-tube surgically implanted, separately from my g-tube. I like the idea of it being over and done with. I’m not so fond of the idea of going through the healing process of creating another stoma, more infection risk, pain, etc. Especially given that apparently j-tubes move more due to peristalsis. Plus the risk of anesthesia combined with bronchiectasis.
All the same, I’m glad to finally have this verified. Last time I talked to my tube-changing doctor about this he accused me of not knowing the difference between blood and bile, laughed at me when I took offense to this, and ignored me when I pointed out that bile doesn’t clot (in fact ignored everything I said from there on out, acted like I wasn’t saying a word – and then tried to interfere with the timing of my tube changes again, because he likes to do everything he can to avoid changing my tube, even if the things he proposes make frequent tube changes more likely).
Anyway now I have yet more concrete proof of things I’ve been saying for years. I’m not even surprised anymore.
10:08am
May 29, 2015
autism problem #183
when people think if they carefully explain to you why being disabled is socially inappropriate, you will stop being disabled
It extends far beyond the “socially inappropriate” reasoning, too.
If you just understand well enough why you have to do this thing, then you will be able to do it, is some of the scariest reasoning of medical personnel that I have ever encountered.
Yes, this.
And at least in medical contexts, this increases the more disabilities you add in (or the more things your disability affects). No, I can’t stop being developmentally disabled just because it’s outside your specialty.
“No I can’t stop being developmentally disabled just because it’s outside your speciality.”
Oh. Those are the words. Thank you.
The most dangerous “outside your specialty” one I ever encountered was when I wasn’t yet diagnosed with myasthenia gravis or adrenal insufficiency. My mom was literally about to be diagnosed with myasthenia gravis while I was still in the hospital. I was about to be diagnosed with gastroparesis, but even that hadn’t happened yet (it would later on in the same hospitalization). I’d been hospitalized for pneumonia so bad that even my friends could sense death hanging around in the room – one of my friends took one look at me on a video chat and burst out crying, and then told me to go to the ER immediately.
So I had pneumonia, and that’s what I was admitted for. I was put on a cardiac ward as overflow. Cardiac wards are generally pretty quiet places, I’ve been on them before for actual cardiac reasons. People there may be seriously ill, but it’s not generally messy, violent illness. They put me on medications that, combined with the undiagnosed gastroparesis, had me vomiting so constantly that they moved my roommate to another room so she wouldn’t have to hear it. Then they closed my door so they would have to neither hear nor respond to it. They were cardiac people, they didn’t want to deal with vomiting, so they just… didn’t.
Myasthenia gravis means that as you use a muscle, it weakens, often dramatically. The muscles used in throwing up are remarkably close to the muscles used in breathing, which were already overworking from the pneumonia. I started breathing very shallowly and my oxygen levels went way down, but they refused to put me on continuous oxygen monitoring.
Meanwhile I was heading into adrenal crisis, which causes a severe overall physical weakness. I became too weak to get out of bed, too weak to roll over onto a bedpan, eventually too weak to move. I shat the bed, and because I had a developmental disability, their response to this was not “OMG you’re really sick we should look into this,” it’s “You shouldn’t get away with that, because if we let you shit the bed you’ll get used to it and never want to use a toilet again.” Which just added insult to humiliation.
Just before I got too weak to move, I curled myself up on the bed in a really weird position. I lifted up the top of the bed as high as it would go, and then I curled up so my back was facing the top of the bed and my face was pointed downwards. I reasoned that this way if I threw up I’d be the least likely to aspirate. It came in handy. Given that nobody was willing to clean me up, let alone help me stop vomiting.
At one point I heard a huge commotion in the hall and then a voice shouting “IF YOU KILL HER I WILL HAVE EVERY LAWYER IN BURLINGTON ALL OVER THIS PLACE!” My DPoA had sent her staff person, a cancer survivor and survivor of that hospital (which does have to be survived at times, because they’re as likely to, deliberately or inadvertently (it’s really hard to tell malice from severe incompetence sometimes), kill you as the illness is on some of the worst wards), come up to check on me. What she found was that they’d shut my door so they could ignore the puking. So she’d throw it open and they’d shut it again and after awhile she started screaming at them and that’s what I was hearing.
I went delirious shortly after that and don’t remember a lot of reality.
But one thing that happened that was utterly horrible: My first hospitalist got into an argument with my DPoA. My DPoA said I belonged in the ICU because the severe weakness combined with the nausea meant I needed a level of vitals monitoring that didn’t exist in the cardiac ward. The hospitalist told her – and I vaguely remember the conversation – “She came in for pneumonia. I’ll treat the pneumonia. That’s all I need to treat. I don’t really care what else she has or whether she’s been eating or any of that. People have survived pneumonia without eating just fine.” (I’d been either not eating, or eating only broth and crackers, for about a month before I came in, and had lost about 40 pounds. But because I was still fat, they didn’t believe me until they measured my weight, later, themselves. So he ignored how long I hadn’t been eating, and treated the “not eating” as if it began when I entered the hospital.)
My actual doctor, who wasn’t there at the time, tells me now that I not only belonged in the ICU, but that I’m lucky to have survived that first few weeks of that hospitalization at all given how little support I was given. I really needed steroids, breathing support, Mestinon, and constant monitoring, but I didn’t get any of those things. I knew I was near death, but I was lucky enough to be just far enough outside the event horizon to claw my way back to life with nothing other than stubbornness. But I was also close enough to death that if I hadn’t been fighting to stay alive, I would have died easily, and could have died easily, without anyone knowing I had a choice in the matter. There’s a weird limbo zone where you do have a choice, and I’ve encountered it more than once in these situations.
But yeah. “I’m only treating pneumonia, I don’t give a shit if something else kills you” is the worst sort of this thing I’ve ever gotten. When it was pneumonia, gastroparesis, myasthenia gravis, and adrenal insufficiency. I don’t know why I’m alive, because this sort of thing has happened more than once, although that was the most blatant example. My doctor isn’t quite sure why I’m alive either.
9:46pm
May 8, 2015
Autistic Catatonia
Progressive movement disorder that sometimes goes with autism, features of both Parkinson and catatonia among other movement disorders.
DSM-V code: 299.00 293.89.
ICD-10-CM code: F84.0 F06.1.
299.00 = Autism Spectrum Disorder
293.89 = Catatonia Due To A General Medical Condition
F84.0 = Autism, Autistic (Childhood, Infantile)
F06.1 = Catatonic Disorder Due To Known Physiological Condition
Just in case anyone else’s doctor wanted to know the way to code autistic catatonia under DSM-V or ICD-10-CM. You can change the first number to fit your diagnosis if you’ve been, say, diagnosed with atypical autism, which is F84.9 for instance under ICD criteria.
I got all the codes of the DSM-V criteria at the Autism $peaks website (which is all they’re good for really). I’ll be emailing them to my doctor who’s been asking for years how to code this.
ETA I messed up the DSM-V autism code so look at it again if you’re gonna use it. It’s 299.00 not 299.80. I’m apparently remembering my atypical autism days too vividly with the forms I had to fill out.
4:13am
March 22, 2015
Hoofbeats in your stethoscope
“When you hear hoofbeats,
Think horses, not zebras.”
That’s what the doctors say
They mean think of obvious diseases
Before the obscure ones
But my life has been a testament
To when this doesn’t work
So I have some lists
To guide doctors on their way
When you hear hoofbeats
The first thing you need to do
Is discern what country you are in
And what country your patient is in
As well as what country your patient is from
What country their parents are from
How far they have traveled
And where
So when you hear those hoofbeats
Galloping up your stethoscope
Here are some things to look out for:
Horses, cows, pigs, sheep, goats, donkeys, mules —
The farm animals and beasts of burden
Familiar to Western doctors
Llamas, alpacas, camels, dromedaries
Asses of all sorts
And not just horses’s asses —
Like some of you
Oxen, buffalo, tapir, rhinoceros
Yaks, wild hogs, deer, antelope
Peccary, chevrotain, and of course zebras…
Can I stop now?
Do you get the idea?
Do you know how many times
I’ve almost died
Due to doctors thinking
“It’s either horses or psychiatric”?
I have a list of non-horse medical diagnoses
Some rarer than others
All confirmed by rigorous testing
Performed by standard medical practitioners
And so does my whole family
So when you hear hoofbeats
Think ungulates
Then try to figure out which ungulate it is
That is, after all, your job
And whether you find horses, zebras, or miniature deer,
You will save lives.
5:58am
February 26, 2015
That disturbing moment when…
….you realize that you, your mother, and your father have all been told by doctors, “I’m not sure how you’re still alive, with test results like that.”
And now your father is, actually, dead.
Luckily the conditions my mom and I were told that about (central and obstructive sleep apnea in my mom’s case – I have those but I think not as severe as her; and adrenal insufficiency in my case) are highly treatable, unlike my father’s cancer. He lived longer than anyone expected, though. I think he held out for my and my mother’s birthdays, but not his own, which shows you what kind of a person he is.
(I still can’t do “was” in the past tense for my father. It feels like he’s still around, just not somewhere anyone living can get to.)
9:15pm
October 6, 2014
A docling!
I don’t know how it got into my house but it was sitting in my bathroom.
Background for those who don’t know: I spend a lot of time hospitalized lately. In a teaching hospital. This means that when doctors make rounds, there’s the one big doctor in the front, followed by a row of residents and med students following the big doctor like ducklings. So I started calling them ducklings.
And then someone on here – I’d give them credit if I remembered their name – said “ducklings, you mean doclings”.
I still say ducklings mostly.
But seriously I own a rubber ducky docling and I didn’t even know it.
8:10pm
September 18, 2014
Rant #1: Literature to Practice Inconsistency in Medicine
you know what really gets me? you read all these pubmed studies from doctors, doctors you’re going to see, and there are always lines about EDS patients like
- “it should not be underestimated how hypermobile these patients are,”
- “extra care should always be taken in surgery or invasive procedures because of various fragilities,"
- "high risk of complications in procedures or dangerous side effects to medications that are more common in these patients should be taken into consideration."
And then you go see these doctors WHO WROTE THAT LITERATURE, and they’re like
- "Are you sure you’re having dislocations? Maybe it’s just regular joint pain?”
- "oh you’ll be fine we don’t need to worry with this procedure”
- "Nah, side effects with this are rare, I’m sure you’ll be fine.” *proceeds to think you’re making it up when you complain about side effects*
Like these people are supposed to be at least reasonably intelligent, do they really not see a problem with this?!I did this once.
Though technically the doctor in question didn’t take patients so I just went to their practice that they worked at.
I went in for erythromelagia and the doctor poked me with a sewing pin and whacked me with a tuning fork a couple times. He then focused on treating my migraines and blood pressure for 2-3 visits then decided I had fibro and told me to come back if “anything changed” even though nothing had been attempted to treat the thing I came in for.
I don’t have fibro I have mitochondrial disease. Despite the blood pressure focus the doctor failed to notice that both the blood pressure and the erythromelagia are symptoms of autonomic dysfunction.
This was a highly regarded neurologist from one of the best hospitals in the country.
I don’t get my hopes up for any doctor knowing what they are doing anymore.
Yeah I saw a specialist for a condition that I absolutely have, like I have very clear test results, and he spent the entire visit telling me why I probably just looked like I had this condition because I had two other conditions that could cause the same symptoms. (Except that treating those conditions didn’t treat the symptoms, which we already knew, and except that I tested positive for the actual condition in question, which we also already knew, but which he disregarded for reasons that are like… in the literature as not reasons that you ever disregard the test results. Like he literally didn’t know the basic literature on how to read the test in question in a certain circumstance, so he insisted on misreading the test in a way that like… a rookie wouldn’t.
And this was supposed to be a serious expert, not just a specialist. It completely deflated my expectations of medical experts, like he didn’t even barely talk to me, he didn’t read my file beforehand, he didn’t read my doctor’s letters to him, in fact he insisted my doctor hadn’t written letters to him, and he barely asked me any questions, including questions that would’ve revealed that he was wrong about the assumptions he was making. And these were basic basic questions that anyone evaluating for the condition would ask, and in fact other doctors much less renowned than him had asked and actually listened to the answers. He just really didn’t impress me as even paying attention, it was like he hadn’t had his coffee or something. I mean everyone has off days but when so much is riding on something, it’s important not to have that off a day. He wrote kind of a generic letter of generic recommendations to my doctor and we’ve made use of that but we both decided there was no reason for me to see this guy again.
1:19pm
August 31, 2014
Oh and the other thing about ‘bad social skills’.
Offline, I see a lot of people say ‘bad social skills’ when they really mean someone is mean or nasty or cruel.
It’s like it’s becoming a euphemism for something it’s not.
Which is disturbing, because I have actual problems with social skills. Like the real actual thing. At least, I lack a lot of the social skills that nonautistic people seem to be born knowing, or pick up in the first five years of their lives. And I will probably never have some of those social skills no matter how old I get. I am always learning, mind you. But it’s discouraging sometimes to learn something when you’re 34 years old and realize that everyone else knew it when they were 4 years old. It’s like you feel like you’ll never catch up, ever.
And sometimes the things you’re learning are important things to know. Like they’re not just cosmetic social skills that make you look good. They’re things about how to be considerate to other people, and things like that. And you learn something in your thirties and realize that most people already knew it when they were in kindergarten. And it’s just really discouraging, because you wonder “What else don’t I know?”
And then people go and describe people as “lacking social skills” when they really mean the person is an asshole.
And you wonder if people think you’re an asshole too because you really lack certain social skills.
I know that social skills and language skills are two of my biggest social problems. I don’t talk about social skills problems a lot because in terms of autism, they’re not my biggest problem and never will be. But I have just as many social skills problems as the next autistic person. And I find myself wondering if I can go through life and not be considered an asshole.
I know that some people do think I’m an asshole, and that this has put my life in danger at times – when your doctors think you’re an asshole, they don’t treat you very well, and when you have life-threatening medical conditions, this is a huge problem. I really need to come up with some autism cards for medical situations explaining various social and communication problems. Because it's always either a social problem or a language problem that makes them dislike me.
Like one of my social things is I don’t do social hierarchies. And it’s not a choice. I can’t do it. I can’t perceive people as above or below me in a hierarchy. And I can’t show the proper deference or dominance that is expected to be shown to someone above or below me in a social hierarchy. Now personally I don’t see this as necessarily a problem in and of itself. But it causes me problems, especially among medical professionals.
The local hospital has some doctors and nurses who have formed a culture where they are better than everyone else in the hospital – better than patients, better than janitors, better than respiratory therapists, just better. The doctors who are like this are worse than the nurses who are like this, but the nurses who are like this can also be pretty bad sometimes.
And anyway, I don’t show the “respect” that they think they are due. It’s not that I don’t respect them on the level that they are human beings and deserve respect. But I don’t show the other kind of respect. I don’t show the kind of respect where you are sending off signals showing deference to the other person, like telegraphing every few seconds “I know you’re better than me.” I don’t think I could do it even if I was trying to do it. (And in a few fits of desperation I’ve tried to do it before, it comes off wrong. Very wrong.)
So then they think I don’t respect them, and then they don’t think I deserve their respect. But the kind of respect they don’t give me, is the basic human kind of respect that everyone deserves. I do give them basic human respect, but they don’t give me any kind of respect.
So like:
- I don’t give them deference-respect. [And they want me to.]
- I do give them basic human respect. [And they don’t notice or care.]
- They don’t give me deference-respect. [And I don’t want them to.]
- They don’t give me basic human respect. [And I need them to, in order to survive.]
Meanwhile, they are above me in a power hierarchy and have control over things that have life and death consequences for me.
So that’s an example of how lacking certain social skills gives me serious trouble. And the thing is, I don’t really think that having to give them deference-respect should be a required social skill. In fact, I think the arrogance that makes them demand that kind of respect and confuse it with basic human respect, is something that should be stamped out of them at the earliest opportunity. When they act like that towards patients, it should be evaluated as part of their professional evaluations as a really bad thing that results in penalties somehow.
But the truth is that right now as things are, lacking that social skill is a serious problem for me. And it’s not fair, and it’s not right, but it’s reality. And people should have to understand that I do lack that kind of social skills, and therefore that I should not be penalized for lacking that kind of social skills. I’m fucking autistic, good grief, cut me a tiny bit of slack here?
And it’s not just that social skill that causes me problems. It’s a whole lot of social skills that I lack, that make people decide that they don’t have to respect me on a basic human level. That somehow, by being socially inept, I have forfeited my right to basic human dignity and being treated as well as people who are not socially inept.
Also frustrating: I know some bullies who are autistic who claim that their bullying behavior is simply “a lack of social skills” or “a problem with communication skills”. They have managed to tie my brain into knots before by:
- Bullying me.
- Claiming that their bullying was a lack of social and communication skills.
- Accusing me of discriminating against them or being “abusive” to them on the basis of their “communication skills problems”.
- Encouraging other people to bully me on the basis of my own communication skills problems. As in, real communication skills problems.
And I think they do it on purpose, which is maddening. I mean, they do the thing on purpose where they do these bad things, blame them on poor social skills, then encourage people to bully me based on my actual poor social skills, while at the same time telling me and everyone around me that I don’t actually have any social skills problems at all and that I am an “eloquent communicator” and therefore have no misunderstandings based on language problems.
(Even though misunderstandings based on language problems are the fucking story of my life. These misunderstandings don’t go away just because you’re a superficially eloquent writer. In fact, the superficial eloquence can make people even less aware of the language problems, causing the misunderstandings to simply grow and grow the better you get at communication in some ways.)
Anyway, it is frustrating to see assholes described as having 'bad social skills’, while at the same time, being assumed wrongly to be an asshole because you have actual bad social skills.
And here I’m mostly not talking about people saying of themselves “I have bad social skills” when they’re really just being an asshole, although I have seen that happen sometimes (see bullies above). I’m talking about totally nonautistic people who’ve started using 'bad social skills’ as a euphemism for 'asshole’ when talking about other people.
And the fact they use it as a euphemism for asshole, makes me wonder what they think of those of us who really do lack social skills. Do they think we’re just assholes?
Anyway sorry for rambling all over the place.
tl;dr: Some people are starting to use 'bad social skills’ (when describing people other than themselves) as a euphemism for being an asshole. I really don’t like this trend. Meanwhile, I have actual bad social skills and it makes people treat me like I really am an asshole, and like I don’t deserve basic human respect. This is frustrating. And scary, when I need that basic human respect for survival reasons.
8:45am
August 27, 2014
Medical shout-outs
Because seriously, some people deserve them.
To my pulmonologist, who did an actual CAT scan of my lungs in anticipation of a hospitalization she knew was coming, so that they’d see the unmistakable signs of pneumonia and know they’d have to take me even though they very much did not want me in their hospital no matter how sick I was. Who has never failed to recognize medical discrimination for what it is, and who has encouraged me when I’ve fought back.
To my GP, who has stuck with me since I moved here in 2005. Who has dealt fairly gracefully with the fact that my body pushes him to do things that, as someone who normally advocates conservative treatment, he is highly uncomfortable with, but knows will mean my survival. Who has tried his best to talk my ‘good side’ up to doctors who see nothing but “bad social skills, rude patient” when they meet me, no matter how nice I try to be. Who has stood by me when I desperately needed treatment that nobody wanted to give me, and has argued for that treatment even when it was treatment he would rather have not had to give. Who has done his best to smooth my way with other doctors when the other doctors really disliked me.
To my endocrinologist, who is new to me, but is shaping up to be a pretty awesome doctor. He is guiding me through the process of learning how to manage adrenal insufficiency. This involves a lot of judgement calls. He answers my emails. He answers all of my questions about stress-dosing (adjusting your dose of hormones to deal with physical illness and emotional stress). And I am finally, thanks to him, beginning to become confident that I know what I am doing.
To my neurologist. Who is methodical and thorough. He asks detailed questions and listens in detail to your answers. Then he writes everything down, taking equally detailed notes. Then he thinks up what conditions, no matter how obscure, might cause your symptoms. Then he thinks up the tests for those conditions. And he figures out which ones to do in what order, and which ones may not be worth doing at all depending on how invasive they are. He is also, throughout this process, quite respectful.
To the entire nursing team on the neuro ward. When I had meningitis, you made what should’ve been a completely awful experience (which it still was, in a lot of ways) way more tolerable. You were professional, you were respectful, you did your best with my meds despite how complicated my med schedule is, you were nice to me, everything went about as well as a hospital stay for meningitis can go. Even being in isolation wasn’t all that bad. The nursing staff can make or break a hospital stay, and you guys made me as comfortable as you could given the raging headache and stuff.
The neurology team: I know it’s a teaching hospital, so I often see a doctor walking down the hall with a gaggle of med students trailing behind them like ducklings. Both the doctors and the ducklings were very nice and respectful during that hospital stay. And they did their best to help me go home as soon as I wanted to go home. They let me decide when I was feeling well enough, and then they helped make it happen. They neither told me I was well when I wasn’t, nor told me I was still too sick when I was fine. (Although they did insist on making sure I wasn’t contagious before I left. But that actually makes sense.)
The Housekeeping team: Because you come into everyone’s room at the hospital room and clean it, and half the time you look like you’re just trying to be invisible. And you look startled when anyone talks to you or thanks you. Even though you’re keeping all their rooms clean for them.
tl;dr: I really appreciate my pulmonologist, my GP, my endocrinologist, and my neurologist. And also, many of the people on the neuro ward from my last hospital stay: the nursing team, housekeeping, and the neurologist and his team. All of these people have made my life better, some of them have saved it many times. And with all I complain about the medical profession, I figured I should mention the ones I have to thank, too.
4:32pm
August 26, 2014
➸ Almost Alike: A Medical Cautionary Tale
If you have ever had problems because your doctor was looking for one underlying condition, when you really had two, three, four, or even fifteen, then the above post is one you should probably click on and read, and pass on to the medical professionals in your life. I really wish I’d known all this before I almost died a bunch of times, which is why I wrote it. A lot of doctors think they’re looking for one condition, and miss the fact that they’re really looking at a bunch of conditions with potentially contradictory symptoms. And a lot of patients die or become very ill before the doctors realize their mistake, even when it’s a good doctor.