A number of people have asked me whats goin' on in re: doctoring right now, and expressed hopes that I got over it soon. Y'all have been much better than I expected. I don't generally tell people when things are wrong with me, because A) most people don't care, and B) people who do care will suddenly swarm all over me because they think that's helpful. It probably is for other people, but I'm a hermit most of the time, and if I constantly have to explain to a crowd of people that no I'm not going to die and no you really can't do anything to help, other than just believe me when I say I can't do that right now, I end up wanting to punch people in the face to make them go away. Then I feel bad about it, because it seems really ungrateful to punch people who are trying to help. But all y'all have been really good about it, so thanks.
A couple people have expressed concern about my heart. A lot of people with Ehlers-Danlos (or other connective tissue things like Marfan's syndrome) have heart problems; EDS patients in particular have a high rate of mitral valve prolapse, which might be no biggie, or might kill you without warning. There isn't any significant history of heart disease in my family; everyone I know COD for has been stuff like 'lung cancer from constant lifelong smoking' or 'kicked to death by a horse in a parade' or 'iatrogenic staph sepsis' or 'complications of being a thousand million years old and senile'. My maternal grandmother, morbidly obese and nuttier than a squirrel's holiday potluck dessert, spontaneously stroked out at 74, and everyone was horrified at how young she was.
I happen to know my heart is fine, because I once managed to freak out an intake nurse.
The last time this all happened was about three-ish years ago, not coincidentally when another landlady decided to toss everyone out of an apartment rented per room so she could rent it as a full flat. (I hate threats of homelessness.) I let the status panickus go on for about two days, which is a conscious limit I've set. I figure if I can't keep food down for two days because I have gastroenteritis, I would hit the urgent care, and not being able to keep food down because I have too much adrenaline isn't really that different.
Anyway, I dragged myself out of bed and took the train down to MGH. Why MGH? Because I'd gone to volunteer for a clinical trial there once. It was hot, I was too poor to be eating much -- hence volunteering for clinical trails -- and the doctor had a lab tech do the blood draw instead of a phlebotomist. She had issues finding a vein, which puzzled me because I'm so pale you can practically spot a vein on me from across the room, and sat there for a while, rooting around in my arm with the needle. I made the cardinal mistake of looking down, went all vasovagal, and evidently flopped over in the chair. The doctor did let me talk my way out of an ER admission (I knew exactly what happened, and that it could in fact be fixed with a combination of me not looking and getting a proper phlebotomist to do the draw) but also gave me a cab voucher and called later to make sure I wasn't dead.
(I honestly figured that was a silly reason upon which to base my choice of ER, but given what happened in Cambridge the last time, it might not have been. Things you learn the hard way.)
One of the things that really weirds out ER people is that I am absolutely, totally, 100% cognizant of what is going on with me. I know it's a panic reaction. I know that it is not per se deadly; I come in because I don't eat or sleep like that, and after a long enough time those things are dangerous. Other people put up a fight on that point, I guess? The symptoms include 'feeling of impending doom' or however they phrase that, and I gather that most people experience that in both the physical sense of an adrenaline dump and the emotional terror of imminent death. I only get the first one. So, while I do get the shaking and the hyperventilation and that awful ice-water feeling right down my back, I'm not actually convinced I'm going to die. My body is reacting like I'm in the middle of a pack of starving dire wolves, but for the most part, my consciousness is going, '...the fuck? why are we doing this? hello, is this thing on?' It is genuinely aggravating and not a textbook presentation of anxiety disorder,
(The only times I've ever been intellectually convinced that the panic was correct and I was going to die are when a panic attack wakes me up. My brains are pretty scrambled when I first come to, and various neurons spend a while slapping around for valid reasons why I should be in mortal terror until the dreaming center shuts off and I regain full consciousness. It tends to result in logic only a paranoid schizophrenic could love. Once I wake up all the way and can parse language again, I just go back to being fucking annoyed at the phenomenon for interrupting my sleep.)
The upshot of this is that I am capable of telling everyone I talk to that I am not an emergency case. I've been like that for two days; hanging on for two hours will not make it worse. It makes the two hours interesting, however, because if I've dragged myself to the ER, that means I'm stuck at the part where innocuous parts of the environment can set me off again. MGH has an LED ticker over the front desk with announcements. The crawl started with ATTENTION or WARNING or something like that, and I got the oh shi- feeling again every time I glanced up and saw it, even though I knew perfectly well that the rest of the announcement was just that if you were coughing and/or sneezing you should come up to the desk to get a mask, so as to avoid contaminating the rest of the waiting room. At one point I asked if there were any other places I could wait, because every single TV in the place was tuned to CNN, and the only thing CNN had on its tiny repetitive mind was that North Korea -- proud winner of Looniest Dictator In The World for 50 years running -- was testing nuclear weapons, and that is exactly the kind of distant-but-legitimately-concerning thing that does not fucking help.
I am able, to an extent, ignore it. That is to say, I have a ridiculous ability to walk around and do stuff without anyone else ever noticing anything is wrong with me. I am not able to ignore stuff in the environment. GABA generally controls inhibition in the nervous system, and that includes the subsystem of the brain that inhibits processing of sensory signals which are not currently germane to survival, i.e., the part that is normally responsible for you 'getting used' (in technical terms, 'habituating') to stimuli that have hung around long enough. Once something becomes a normal, expected part of your environment, your brain goes 'well, it hasn't eaten us yet, so it's probably not going to', and turns its attention to other things. When I am stuck in status panickus, that part does not work. I can't just hear something, evaluate it once and go, 'oh, that's just the asshole neighbor with the pickup truck', and then just ignore it in the future. Every single time the truck noise happens, it grabs my attention by the back of the coat and slams it face-first into a wall. It is the most obnoxiously paranoid drunk imaginable, who used to box for a living and assumes any muttering it couldn't quite make out is a crude slight against its mother. Nor can I pre-evaluate things like that. I can know that I'm expecting a package and therefore doorbell at 3pm == good!, but it doesn't matter at all, because by the time I have managed to have any actual thoughts about the ding-dong noise, I have already hit the ceiling.
Basically, I sit there and freak out very quietly while trying not to freak out anyone around me. A visible freakout would not make me feel better, nor does it generally elicit any helpful reactions from others, and on top of that I learned early on that some people apparently feel that you're having a panic attack at them out of malice and start shouting. I don't see the point in bothering.
So I parked it in the waiting room at the MGH ED, trying and failing not to hear all the babble about North Korea and whether various people thought it was a good idea to pre-emptively nuke them into a glassed-over parking lot, until the hospital staff called my name. Generally what they do at that point is take you to a desk or a cubicle and take your vitals while asking you about your chief complaint and getting a basic history and rundown of stuff you're allergic to. The intake nurse walked me back to a place that mercifully did not have any television sets, stuck a pulse oximeter on my finger, and sat down a few feet away at the computer, where as it happened she couldn't see the display screen for the finger widget. She asked a bunch of questions, which I answered, and then stepped back around to take a look at my vitals.
The nurse's expression flipped into one that I recognize as the 'this is me not making the oh shit face' face. I don't remember exactly what my heart rate was. I seem to recall it was up in the vicinity of 140 bpm, which is unusual but not impossible, and would definitely account for her reaction; I know it was up over 120 bpm, and that 100 bpm is the cutoff between normal and tachycardia.
I was unperturbed by this. I've never bothered to take my pulse while in the throes of a panic attack, so I don't know if I hit such ambitious highs much, but some amount of tachycardia is pretty standard. It doesn't radiate pain or involve a precordial catch, I don't feel short of breath, and I don't feel like it's skipping any beats, plus virtually everything ever written about panic attacks says that people freak out over things their heart does even though no seriously you are not having a heart attack you hypochondriac twit. Usually I mention 'tachycardia' as a symptom just to be completionist and don't bother to complain any further about it. It's not the most magically wonderful thing to happen to your heart, but jogging isn't the most magically wonderful thing to happen to knees either. All other things being equal, and you not having any underlying pathology, it's not going to kill you.
Whatever my heart rate was, the intake nurse decided that I had just won myself a bonus EKG and scurried off to get a tech. They had someone sticking leads to my chest within a few minutes, so I assume the number was impressively worrying. The verdict was that everything looked normal, aside from me being in a state of adrenaline-soaked misery. They underscored this by then leaving me totally unattended in an exam room and then a completely different waiting room for another couple of hours before anyone bothered to give me any Valium. Mitral valve prolapse is exactly the sort of thing that would show up on an EKG, so I evidently have not got it. The staff was considerably more concerned when I later had to tell them that I thought the orderly gave me about a fuckload and a half of Valium, rather than the quarter-fuckload I actually needed, and that I was now so relaxed I wasn't sure I could walk straight. That got me my second meeting with Mr Pulse Oximeter, although no more talk of EKGs, so I assume the Valium at least did its job correctly there.
So, in conclusion, you can all stop worrying about my ticker. My normal heart rate at rest is ~65 bpm, which is at the low end of normal. Apparently being so poor you hike everywhere to save on subway fare is a great way to get in some aerobic exercise.
A couple people have expressed concern about my heart. A lot of people with Ehlers-Danlos (or other connective tissue things like Marfan's syndrome) have heart problems; EDS patients in particular have a high rate of mitral valve prolapse, which might be no biggie, or might kill you without warning. There isn't any significant history of heart disease in my family; everyone I know COD for has been stuff like 'lung cancer from constant lifelong smoking' or 'kicked to death by a horse in a parade' or 'iatrogenic staph sepsis' or 'complications of being a thousand million years old and senile'. My maternal grandmother, morbidly obese and nuttier than a squirrel's holiday potluck dessert, spontaneously stroked out at 74, and everyone was horrified at how young she was.
I happen to know my heart is fine, because I once managed to freak out an intake nurse.
The last time this all happened was about three-ish years ago, not coincidentally when another landlady decided to toss everyone out of an apartment rented per room so she could rent it as a full flat. (I hate threats of homelessness.) I let the status panickus go on for about two days, which is a conscious limit I've set. I figure if I can't keep food down for two days because I have gastroenteritis, I would hit the urgent care, and not being able to keep food down because I have too much adrenaline isn't really that different.
Anyway, I dragged myself out of bed and took the train down to MGH. Why MGH? Because I'd gone to volunteer for a clinical trial there once. It was hot, I was too poor to be eating much -- hence volunteering for clinical trails -- and the doctor had a lab tech do the blood draw instead of a phlebotomist. She had issues finding a vein, which puzzled me because I'm so pale you can practically spot a vein on me from across the room, and sat there for a while, rooting around in my arm with the needle. I made the cardinal mistake of looking down, went all vasovagal, and evidently flopped over in the chair. The doctor did let me talk my way out of an ER admission (I knew exactly what happened, and that it could in fact be fixed with a combination of me not looking and getting a proper phlebotomist to do the draw) but also gave me a cab voucher and called later to make sure I wasn't dead.
(I honestly figured that was a silly reason upon which to base my choice of ER, but given what happened in Cambridge the last time, it might not have been. Things you learn the hard way.)
One of the things that really weirds out ER people is that I am absolutely, totally, 100% cognizant of what is going on with me. I know it's a panic reaction. I know that it is not per se deadly; I come in because I don't eat or sleep like that, and after a long enough time those things are dangerous. Other people put up a fight on that point, I guess? The symptoms include 'feeling of impending doom' or however they phrase that, and I gather that most people experience that in both the physical sense of an adrenaline dump and the emotional terror of imminent death. I only get the first one. So, while I do get the shaking and the hyperventilation and that awful ice-water feeling right down my back, I'm not actually convinced I'm going to die. My body is reacting like I'm in the middle of a pack of starving dire wolves, but for the most part, my consciousness is going, '...the fuck? why are we doing this? hello, is this thing on?' It is genuinely aggravating and not a textbook presentation of anxiety disorder,
(The only times I've ever been intellectually convinced that the panic was correct and I was going to die are when a panic attack wakes me up. My brains are pretty scrambled when I first come to, and various neurons spend a while slapping around for valid reasons why I should be in mortal terror until the dreaming center shuts off and I regain full consciousness. It tends to result in logic only a paranoid schizophrenic could love. Once I wake up all the way and can parse language again, I just go back to being fucking annoyed at the phenomenon for interrupting my sleep.)
The upshot of this is that I am capable of telling everyone I talk to that I am not an emergency case. I've been like that for two days; hanging on for two hours will not make it worse. It makes the two hours interesting, however, because if I've dragged myself to the ER, that means I'm stuck at the part where innocuous parts of the environment can set me off again. MGH has an LED ticker over the front desk with announcements. The crawl started with ATTENTION or WARNING or something like that, and I got the oh shi- feeling again every time I glanced up and saw it, even though I knew perfectly well that the rest of the announcement was just that if you were coughing and/or sneezing you should come up to the desk to get a mask, so as to avoid contaminating the rest of the waiting room. At one point I asked if there were any other places I could wait, because every single TV in the place was tuned to CNN, and the only thing CNN had on its tiny repetitive mind was that North Korea -- proud winner of Looniest Dictator In The World for 50 years running -- was testing nuclear weapons, and that is exactly the kind of distant-but-legitimately-concerning thing that does not fucking help.
I am able, to an extent, ignore it. That is to say, I have a ridiculous ability to walk around and do stuff without anyone else ever noticing anything is wrong with me. I am not able to ignore stuff in the environment. GABA generally controls inhibition in the nervous system, and that includes the subsystem of the brain that inhibits processing of sensory signals which are not currently germane to survival, i.e., the part that is normally responsible for you 'getting used' (in technical terms, 'habituating') to stimuli that have hung around long enough. Once something becomes a normal, expected part of your environment, your brain goes 'well, it hasn't eaten us yet, so it's probably not going to', and turns its attention to other things. When I am stuck in status panickus, that part does not work. I can't just hear something, evaluate it once and go, 'oh, that's just the asshole neighbor with the pickup truck', and then just ignore it in the future. Every single time the truck noise happens, it grabs my attention by the back of the coat and slams it face-first into a wall. It is the most obnoxiously paranoid drunk imaginable, who used to box for a living and assumes any muttering it couldn't quite make out is a crude slight against its mother. Nor can I pre-evaluate things like that. I can know that I'm expecting a package and therefore doorbell at 3pm == good!, but it doesn't matter at all, because by the time I have managed to have any actual thoughts about the ding-dong noise, I have already hit the ceiling.
Basically, I sit there and freak out very quietly while trying not to freak out anyone around me. A visible freakout would not make me feel better, nor does it generally elicit any helpful reactions from others, and on top of that I learned early on that some people apparently feel that you're having a panic attack at them out of malice and start shouting. I don't see the point in bothering.
So I parked it in the waiting room at the MGH ED, trying and failing not to hear all the babble about North Korea and whether various people thought it was a good idea to pre-emptively nuke them into a glassed-over parking lot, until the hospital staff called my name. Generally what they do at that point is take you to a desk or a cubicle and take your vitals while asking you about your chief complaint and getting a basic history and rundown of stuff you're allergic to. The intake nurse walked me back to a place that mercifully did not have any television sets, stuck a pulse oximeter on my finger, and sat down a few feet away at the computer, where as it happened she couldn't see the display screen for the finger widget. She asked a bunch of questions, which I answered, and then stepped back around to take a look at my vitals.
The nurse's expression flipped into one that I recognize as the 'this is me not making the oh shit face' face. I don't remember exactly what my heart rate was. I seem to recall it was up in the vicinity of 140 bpm, which is unusual but not impossible, and would definitely account for her reaction; I know it was up over 120 bpm, and that 100 bpm is the cutoff between normal and tachycardia.
I was unperturbed by this. I've never bothered to take my pulse while in the throes of a panic attack, so I don't know if I hit such ambitious highs much, but some amount of tachycardia is pretty standard. It doesn't radiate pain or involve a precordial catch, I don't feel short of breath, and I don't feel like it's skipping any beats, plus virtually everything ever written about panic attacks says that people freak out over things their heart does even though no seriously you are not having a heart attack you hypochondriac twit. Usually I mention 'tachycardia' as a symptom just to be completionist and don't bother to complain any further about it. It's not the most magically wonderful thing to happen to your heart, but jogging isn't the most magically wonderful thing to happen to knees either. All other things being equal, and you not having any underlying pathology, it's not going to kill you.
Whatever my heart rate was, the intake nurse decided that I had just won myself a bonus EKG and scurried off to get a tech. They had someone sticking leads to my chest within a few minutes, so I assume the number was impressively worrying. The verdict was that everything looked normal, aside from me being in a state of adrenaline-soaked misery. They underscored this by then leaving me totally unattended in an exam room and then a completely different waiting room for another couple of hours before anyone bothered to give me any Valium. Mitral valve prolapse is exactly the sort of thing that would show up on an EKG, so I evidently have not got it. The staff was considerably more concerned when I later had to tell them that I thought the orderly gave me about a fuckload and a half of Valium, rather than the quarter-fuckload I actually needed, and that I was now so relaxed I wasn't sure I could walk straight. That got me my second meeting with Mr Pulse Oximeter, although no more talk of EKGs, so I assume the Valium at least did its job correctly there.
So, in conclusion, you can all stop worrying about my ticker. My normal heart rate at rest is ~65 bpm, which is at the low end of normal. Apparently being so poor you hike everywhere to save on subway fare is a great way to get in some aerobic exercise.
i didn't realize that EDS messes with your heart. it makes sense, when i think about it, though. thank you for teaching me something new.
ReplyDeleteaside from that, i also have an anxiety disorder and have had the local hospital flip out because i was having issues. it really doesn't help the panic when the nurse is doing their best 'i'm not going to lose my sh*t' face as they quietly call a boatload of people over. it's one of the reason why i hate hospitals, honestly. in my case it was an anxiety attack that set off an asthma attack. took them a while to figure out i really was having a problem with anxiety and it wasn't just asthma. :P anxiety disorders suck in all their florid suckiness.
how is the costuming stuff going? it's been really cool to read about what you have going on with that. :)
Seconding the costuming curiosity. I am boggled that you have managed to accumulate such a huge clothing stash ( ? it sounds like a large personal stash, anyway).
ReplyDeleteAlso, the 'relative kicked to death by a parade horse' story sounds like it could be interesting to hear at more length.
Ehhh, it's not huge, I wouldn't say. What's happened is that I have a very small basic everyday wardrobe, and then a lot of odd pieces that come in very handy for being dramatic, either on stage or just for the hell of it. Mainly, I have a lot of weird vintage and period accessories. I get most of it at thrift shops, or I've made it for something and then took it home with me afterward. (I wear it, but the pieces are implicitly borrowable by the company whose show I made them for, obvs. I get away with it because, while they don't technically have a set membership, they haven't failed to call me back for something in any show since I started turning up to auditions.) Technically I've paid retail for things, but only because there's a Forever 21 and an H&M downtown.
DeleteAnd aside from that, I got paid for a shoot a while ago in tote bags full of gowns. I'm hostessing a weekly show on a paddlewheeler in the harbor this summer, and I can easily do the entire run without repeating a dress.
Sadly, I don't know any more about the horse story. He was in a parade, he fell off the horse, the horse kicked him, he died. It was long enough ago that "death by horse kick" was a thing that happened with some regularity, so nobody thought much of it. He was already fairly old at the time, IIRC.
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