#hospital talk

[thesewersofparis]

remember my weird throat thing that ive been complaining about for years

just got back from a hospital stay after it finally swelled up to like big egg size and i was finally taken seriously and diagnosed lmao

literally just a persistent thyroglossal duct cyst, not even a WEIRD thing, why did it take 7 doctors to figure out whos to say

#ill get it removed in like november or sth #cant wait to have a cool 'slit ur throat' scar lmao #uh #hospital talk #medical stuff

[crippleprophet]

hiii!! i was wondering if u have any advice on getting taken seriously and getting care in an emergency department as a chronically ill/disabled person?

i've had progressive muscle weakness, fatigue, nerve issues, and pain for like five years that hasn't been properly diagnosed (been told it was fibro but. doesn't seem to fully fit that anymore. idk if anything will show up on tests but even if it doesn't i feel like the more correct diagnosis would be ME. my current gp thinks i have [seronegative] myasthenia gravis but gps can't order emgs so can't diagnose it), and recently have been having trouble breathing that seems like it's due to muscle weakness in my chest and follows the same patterns as my other muscle weakness.

my gp can't do anything to help (and referrals always get declined because the system is overwhelmed) and can only advise that i go to the hospital, been to one hospital who sent me home because my oxygen saturation was fine (even though from what i've read shortness of breath caused by muscle weakness doesn't show in oxygen saturation til it's Very Very bad, at the time i could only speak a couple syllables per breath and my peak flow was around half of what it usually is), i asked my gp what to do and he told me to try the further away hospital and explain that i haven't been able to get care at the closer one.

my mum is going to take me in a couple days (unless i really can't breath in the mean time obviously) and i'm nervous because i usually get dismissed, or they'll do a couple tests but not the ones that would actually show the conditions that i might actually have. i don't know how to advocate for myself without getting seen as overreacting, or get care for a chronic condition that has become urgent because usually if it's been happening for a while they'll say to just talk to ur gp but. my gp can't do anything.

(note: i know ur only supposed to go to the emergency room for things that are really urgent and the fact that i'm waiting a couple days might make it not urgent. my gp has said this is the best thing i can do though because there's literally no other avenue for me to get care and with my breathing the way it is i am even more restricted in what i can do than i have been before.)

oh god, i’m so sorry you’re in this position and am sending so much love to you. obligatory disclaimer that i’m not a medical professional, just Some Guy with a couple degrees, a girlfriend in medical school, and a whole lot of medical trauma.

that being said, my only advice is to lie. lie your ass off, lie like your life depends on it, most importantly lie in an informed fashion - which is easy in this case because you pretty much know what you have, you just need them to do the test you want. the doctor thinks they’re creating a clinical picture on a blank canvas and you need to give them a paint-by-numbers.

here are the factors i would consider and the narrative i would construct if i was in your position, but it’s your body, your experiences, and your care (or lack thereof), so all of this is just my opinion and your mileage absolutely may vary:

most importantly, make sure anyone with you in the ER is on the same page. a lot of doctors assume patients are lying by default because they suck, so if somebody contradicts you, you’re probably screwed. when my gf takes me to a doctor’s appointment, we have a “what are we lying to them about” meeting ahead of time. you know your mum best, so you probably know what approaches she would/wouldn’t be on board with, but i’d initiate that conversation like “i’m concerned this hospital might dismiss me like the other one did, so i’m planning to say XYZ to hopefully get them to take me more seriously” and not “Some Guy on tumblr told me to lie my ass off” lol

next, make your symptoms match the textbook. downside to this, i definitely recommend not bringing up ME/CFS because they can’t/won’t test for or treat it (i have a friend in the UK who almost certainly has ME/CFS and just got sent to even more physical therapy). here’s where it helps that your GP is pretty sure they know what you’ve got (whether you actually have that or not): research myasthenia gravis (i recommend continuing education sites geared towards clinicians), know what’s on that list, and (with some exceptions) say you have those symptoms. my personal strategy is three-tiered:

lies of creation: unless it’s something immediately life-threatening or something they can concretely disprove, say you have symptoms of your disease even if you don’t. ER doctors don’t give a shit if they can say you need to wait it out and go to a specialist, regardless of that being unrealistic and your symptoms being unlivable, so you need something urgent and serious. (my gf says “they might be worried if you’re having trouble swallowing. maybe.”) myasthenia gravis typically waxes and wanes, so even if you’re able to do something when they examine you, it would be totally realistic for you to not have been able to a couple of hours ago (eg, when you arrived to the ER). for example, i told the NHS i totally had a positive MRI in the US that i was having delays getting access to the records of, even though my MRI didn’t show a speck of inflammation, because at least that got me a couple months of flare medication while they confirmed and an NSAID when they decided i was in remission rather than literally nothing. obviously you can’t tell them you’re seropositive because they’ve unfortunately got that record, which means you’re already fighting an uphill battle, which leads to my favorite sub-category lie of creation: anything you’ve read or believe or know that works in your favor, your GP told you. memorize what percent of people with myasthenia gravis are seronegative - don’t lead with that, because doctors hate when people are educated about our conditions or know what’s wrong with us, but if they say “we won’t do an EMG because you can’t have myasthenia gravis because of your bloodwork,” then you can be like, “my GP said that’s pretty common, like, about X% of people don’t show up on the test, and they’re really convinced i have this.”

lies of exaggeration: increase frequency of symptoms, impact on your activities of daily living, rank on a scale. familiarize yourself with what the numbers on the pain scale generally mean in terms of ability, and elaborate - “my pain is at an 8, it’s really hard to XYZ.”

lies of omission: this ER doctor was an asshole and still would’ve fucked me over regardless, but the instant i said “yes” when he asked if i experienced acid reflux, he stopped listening to a single word i said. i was experiencing acid reflux, and i knew that symptom happened with IBD, celiac, and a host of other serious conditions, but he instantly decided that was all that was going on with me, tried to send me home with just an antacid during the worst pain of my life, and led to me experiencing malnutrition and all my hair falling out due to the severe delays in accessing care. my recommendation for “instant dismissal” (or worse, “instant institutionalization”) symptoms to omit are: acid reflux; menstrual cramps or really anything related to menstruation; anything they could dismiss as covid - if they try to dismiss your breathing issues as covid, say you’ve tested negative this week even if you haven’t had a test. if you’ve had covid and you’re certain it’s not in your chart (assume it’s in your chart if you’ve ever said it to a doctor), say you’ve never had covid. if they still try to say it’s covid, stress that this has been going on for years before covid; anything psychiatric.

so, what i would do:

“i have X, Y, and Z symptoms. my GP thinks i have myasthenia gravis and is working on referring me, and said to go to A&E if A, B, or C got worse. A, B, and C have [measurably gotten significantly worse since the last time you went to A&E] - i’m having trouble breathing, swallowing, and [other].” hope that they decide to do an EMG on their own.

if they try to send you home or try to do useless tests, say “my GP mentioned that i really need an EMG in order to get the treatment that would help me be able to breathe, swallow, [other]. will this test also do that?” (one of the instances where you strategically ‘play dumb’ because doctors hate when we know things)

if they still won’t do anything helpful, either you or your mum say: “i’ve/they’ve had these symptoms for five years and it’s never been remotely this bad. i/they seriously can’t breathe, swallow, [other] - how do we manage these symptoms before we can get to a specialist?” i’m white and, having been super professional/polite until then, this is the point where i start crying; you know your circumstances best and whether that will incur racism, etc, upon you from the medical system.

if they still want to send you home, i (again, being white) would at that point firmly request a second opinion. they still might send you home with nothing; i did all of this shit and received 50 pills of 50mg tramadol in addition to the antacid, and probably an angry note in my file, and not a millisecond of further testing.

i say this with love and from experience, in the interest of minimizing trauma and devastation: you need, to the best of your ability, to go to the emergency department with the expectation of receiving no care. i recommend a buddy, a reminder, and a reward: message a bitter crip or someone else who Gets It throughout the process and have support in place for if/when you get home with new medical neglect and trauma; remind yourself that your symptoms are real and serious and, in my gf’s words, “if your GP thinks you have myasthenia gravis, you almost definitely have something neuromuscular going on.” i like to make posters of my reminders (example here: link); do something that will make you feel better afterwards - my go-to is buying a new stuffed animal after experiencing medical trauma. i have a lot of them lol

for more advice on coping with medical neglect before and after appointments/visits, see my post here (link). if you don’t know anyone who’ll understand or be available and helpful to support you during your trip to A&E, feel free to dm me and i’d be happy to give you my WhatsApp. i wish you so much luck and you’ll be in my thoughts, i really hope it goes as well as possible - you deserve quality, compassionate, thorough care. if you’re comfortable with doing so and feeling up for it i’d really value an update afterwards 💓💓💓

#doctor hate blog ✌️🖤 #faq #hospital talk #asks

[vanweezer]

not to be all singing killed my grandma but ever since my first time in the psych ward as a kid i can like never Ever watch the superbowl the same. i like when my parents go to the bar or whoevers house to watch it. i like seeing my friends celebrate. but for some reason it puts me back to just. lying on an ez chair pretending it was a bed. sweating through my clothes with all the lights on. the loud tv. scaring myself awake when its really just nightly check ins. its so weird. i always expect the feeling to curl its way back on the day. it goes without saying i dont care for many sports. it also goes without saying that i love when those i love are happy. its just disorienting

#problems! #srry for rambling im a lil stoned. hehehe #hospital talk

[uozlulu]

So last month we got this notice from the doctor's office that she's moving to the next town over so everyone's got to change their appointments or you'll lose them. They wouldn't call me back because somehow my cellphone was listed as the default number to call which I never want because my voicemail won't work properly.

Anyway, I lost my appointment. Then they rescheduled me for Thursday. I get online to reschedule it yesterday and find out I don't have an appointment for Jan 25, 2024 but for January 24, 2025 (wtf)

So I canll them today and start out all "I need to move my Thursday appointment because I'm sick," and they're like "I don't see a Thursday appointment, but I see a Friday appointment for the 26th, do you think you might make that one?" and it's like no, friends, I will not I'm still congested.

So now I don't get to have my physical until September (bleh), but I did score a med refill appointment for Feb (yay)

#this has been such an unnecessary mess omfg #hospital talk #for lack of a better tag

[writinandcrying]

I had to do a medical procedure today and had anesthesia for the first time, I’ve always wondered what it would be like to go under the effect of it, I’d like to talk about some of my highlights according to my aunt

I bonded with a girl doing crochet at the patient waiting era, I said I loved crochet and did it too but I could only make one long piece and called it a “Barbie rug”

I poked 2 people next to me (I don't know who they were) To ask if everything was okay (they were also under the effect of anesthesia) and I remember that I got up to catch those hanging blood thingies (idk the name in English for that) for one of them, they weren’t taking anything but wanted to hold it none of the less, I stood up and took one when the nurse wasn’t looking LMAO

I didn't want to leave without hugging and saying goodbye to my nurse

Chief nurse: “who’s the nurse? Do you know their name?”

Me: “no, I know she had a baby in her forties and doesn’t have any wrinkles in her face, can I hug her goodbye?”

(I did not find the nurse and didn’t hug them goodbye which made me super sad tbh)

I asked for a cup of Coca Cola more than 3 times and got upset once again when there wasnt any. At a hospital.

there’s a bubblegum brand in my country that sells sort of like a little cup with several flavored type of gums in it, apparently my aunt had it in her car and according to her I held it close to my chest/heart the whole way to my place and told her repeatedly how much I love tutti-frutti bubblegum (I do love it a lot LOL)

When I got home I accidentally dropped a whole bowl of salad (whoopsie) and wanted to eat the bubblegum’s with regular food

Feed my dog ground beef with a spoon cuz it was “too hot” for her

If you ever feel afraid of doing anything that requires anesthesia, don’t worry!! you literally don’t… idk you don’t see anything happening? I was afraid I would wake up during the exam, i remember asking “will it take long to have an effect on me?” And the next thing I remember was the nurse saying “oh the procedure is already over :)” you can’t even recall falling asleep, and Literally going through the aftermath is so freaking fun lmao

#anesthesia #made me want to be a nurse for a hot second cuz dealing with this anesthesia phase must be so freaking funny lol #hospital #hospital talk #I’m afraid someone might have a Tw with this kind of subject so Imma tag a lot of thing #nurse #anesthetic #medical procedure #funny moments #giulia writes #personal #needless to say #I’ll write about this

[faofinn]

So I (Ev) have this thing that whenever we have Sicktember or Whumptober or literally any writing challenge, I end up in hospital. I've been here since Friday and Sicktember is fast approaching, whumptober prompts have just been released, and I'm staring at the same four walls going mad with zero inspo.

I feel sorry for Shiv, my long suffering partner, and partner in crime. Nothing ever changes, and it's not disappointed (in terms of consistency, I'm very disappointed in my health) us in the four years we've known each other.

Maybe next year, my body will understand that just because the boys get whumped, I don't need to be too.

...i doubt it...

#ev talks #ev rants lbr #hospital talk #ev goes meta

[doyouevermakeasound]

Febuwhump Prompt Day 9: Voice Loss CW: Post-surgery talk, aspiration, hospital talk, vomiting mention

A/N: Admittedly, this one is going to hit closer to home since I’ve got a paralyzed vocal cord.  So, here ya go.  It’s a little more real whump than fictional whump but good to write down. 

The worst was the inability to yell for help.  The fear of being so close to everyone but being silenced, not by a gag, but your own body failing you was something they thought that they would never experience.  Now it was their reality.

How do you deal with your voice being snatched away like that?  How do you go to work once you’re recovered and find your limits have drastically changed?

Some spoke to them in a whisper back.  They were only mirroring what they heard.

Some got frustrated with them.  Speaking took longer.  It took breath that leaked away easily.

They grew increasingly uncomfortable even going out to order food.  If it was loud at the restaurant they relied on others to order for them.  For someone who tried to be independent, it hurt.  

Eating came with its own challenges.  Having aspirated once, the fear stood at the back of their mind.  They were alone when they had aspirated the first time and it was terrifying.  They gasped for air in between bouts of vomiting and coughing.  When they finally had the ability to catch their breath, they laid on the bathroom floor, not even crying because that brought their own challenges after their surgery.

Losing their voice took something from them.  It made them frustrated.  It made them anxious.  It made them depressed.  It made them feel vulnerable.

Vulnerable. 

@febuwhump

#febuwhump #febuwhumpday9 #voice loss #whump prompt #post-surgery talk #fox writes #aspiration #vomiting mention #hospital talk #febuwhump 2023

[talkfastromance4]

My grandma is back in the ER again. Please send healing thoughts and/prayers her way if you feel inclined🩷

#personal #hospital talk #ER mention #hospital mention

[boldlyvoid]

7 years ago today i was in the hospital with sepsis, on my literal death bed, being pumped full of Dilaudid while i had to wait 13 hours for a surgeon to become available to take out my appendix. free healthcare is lit because i didn't have to pay but waiting that long and almost dying has fucked up my whole life

#death tw #hospital talk #tw medical issues

[jevsterchester]

Hello, everyone

It takes a lot for me to ask for help, but even though I'm a little scared I would still like to just kinda toss my hat on the floor and ask for a favor.

As some of you may know, two weeks ago my mom got gravely ill to the point that she had to be hospitalized.

Every single day I went over to the hospital and stayed with her all day to make sure she was doing well and to stay informed.

She had me jotted down as her personal caretaker and decision maker so I didn't go to work at all these past 2 weeks, almost three now @v@

I had some financial help from my family and also thankfully had quite a bit in my savings as well.

Driving back and forth, bills, and eating out did kinda help lower what I had saved up though, hehe;;

Even though she has been discharged from the hospital, she still has difficulty walking without support, let alone being able to like, cook and do other basic necessities, so I'm going to stay with her until she can at least manage that much.

I don't know how long this will take- at the rate she's recovering probably not that long but still, rather than let it get to a bad point I'd like to ask now for some financial help.

I'm...very embarrassed, and I know it's silly, but really if any of you can donate something, that would help a lot.

I'll be opening up commissions soon too when I feel a little more mentally stable so if you want to wait for that as well that's okay.

Thank you so much for...well, everything.

JevsterChester's Ko-fi

#emergency funds #donations #financial help #commissions will be opening soon too #hospital talk

[soniabigcheese]

Well ... hubby has been told that he could go into hospital to have his heart restarted and hopefully rest his heart rhythm.

We are still in negotiations about it and have been given a couple of weeks to think about it.

So that's good news ... sort of

#hospital talk

[sevenoctober7]

Don't stop talking about Palestine 🇵🇸

#palestine #gazaunderattack #gaza #free palestine #gaza hospital #israel is a terrorist state #غزة تحت القصف #فلسطين #طوفان الاقصي #غزة #Don't stop talking about Palestine 🇵🇸

[crippleprophet]

hi lmao i might. be panicking a little bit. also if you figure outnwho this is no you didnt. uhh but basically i have constant chronic pain right. and its awful all the time. so when i get a random new pain i just sort of . leave it. well this time i decided to get massage. now it turns out. i mightve dislocated/subluxed my shoulder. and then got a massage on it. and im in so much pain that i now have to go to the ER. uhhhh i dont know the purpose of sending this i just hurt and i guess i wanted to geel seen bc ERs terrify me last time i was there they told me i wasnt mentally ill enough to help lmao

oh fuck i’m so sorry you’re going through that, i really hope they’re able to help and that you receive adequate pain relief. i definitely experience a lot of stress around ERs due to medical neglect so i’ll be thinking of you and hoping you receive quality, compassionate, comprehensive care (+ that your wait isn’t too long!)

#asks #hospital talk #medical neglect

[sleepytboysblog]

Bleeds so so sadly. I hate bloodwork, my arm hurts 😞

#chronic illness #hospital #cw blood #bloodwork #hospital talk

[uozlulu]

Can’t stop thinking about the new doctor I saw today suggesting a love coach.

Like just

1. I’d rather take the friends to lovers path rather than strangers trying too hard dating path 2. I am unkissed and almost 40. Which is why again, friends to lovers seems the more apt route. Let them get to know I’m a little weirdo first. They can unlock my backstory and then decide if it’s worth it 3. The level of pity that it was said with? Like I appreciate she doesn’t see me the way my peers and classmates did at school but like this lack of kissing isn’t due to a lack of trying

That said, it came from a place of respect in a way which isn’t a bad thing but I’m still just perplexed by it. Imagine wasting all that money on something that might not even pan out

#personal romance #hospital talk #for lack of a better tag

[extroadinarily-empty-headed]

I'm so sick of going to the hospital. Over and over for the same issue. The surgery the medications, none of it worked anyway. Some made it worse. Months in the making of this build up of pain.

#hospital talk #hospital tw