salt-baby

[salt-baby]

yes, doctors suck, but also "the medical ethics and patient interaction training doctors receive reinforces ableism" and "the hyper competitive medical school application process roots out the poor, the disabled, and those who would diversify the field" and "anti-establishment sentiment gets applications rejected and promotions requests denied, weeding out the doctors on our side" and "the gruesome nature of the job and the complete lack of mental health support for medical practitioners breeds apathy towards patients" and "insurance companies often define treatment solely on a cost-analysis basis" and "doctors take on such overwhelming student loan debt they have no choice but to pursue high paying jobs at the expense of their morals" are all also true

none of this absolves doctors of the truly horrendous things they say and do to patients, but it's important to acknowledge that rather than every doctor being coincidentally a bad person, there is something specific about this field and career path that gives rise to such high prevalence of ableist attitudes

and I WILL elaborate happily

[salt-baby]

"how's your health?" HIPAA protected, thanks

#i got sent a shitty email asking me to justify my absence and decided to cause problems #responded back like #so sorry i wasnt in touch i almost died but next time ill send an email #quickest 'NO ITS FINE' reply ive ever gotten #but now one of em sends me an email biweekly asking about my health #babes you are part of the problem not the solution #its fine im gonna wave something shiny and throw it and ill escape answering that today #disability #salt baby talks #chronic illness

[salt-baby]

I think the take-away from my near death experience is that I am simply unkillable

#its either laugh or cry and i choose laugh #i have become extremely cautious since then #in case this post is concerning #i honestly never felt i was in that much danger #i wasnt able to check my skin at the time even though i knew i had hives #only once i had been admitted and set up in the ER did it start to feel severe #esp after i saw my vitals #and looking at it from the ERs point of view #patient walks in after driving three hours in anaphylaxis for two of them #epipen a foot away and unused #HR 144 BP 150/100 and PMH of uncontrolled severe asthma #and also reporting difficulty swallowing and asthma #yeah okay i get it #there was a moment i decided between going into my home after a long drive or restarting the car and driving five min to the ER #thats a crossroads #i had no clue i had a life threatening allergy disorder #i thought i had a nearly gone childhood peanut allergy #good call i suppose #i did get scolded for the epipen tho #heres the mystery to me tho: where did the hypertension come from? #im normally hypotensive #bp technique wasnt ideal but not enough to cause that kind of distortion #anaphylactic shock is supposed to cause hypotension #maybe one of the many medications im on #or a unique feature of mcas #ramble over #although I'll never be done treating my medical records like an interesting puzzle #disability #chronic illness #salt baby talks

[salt-baby]

[Image ID: A screenshot of an Xbox achievement notification, which has been edited to say "Achievement Unlocked MCAS" ./. End ID]

shout-out to MyChart for letting me get on the wait-list for cancellations

#its not funny but its funny #i just have hives all the time now #and im allergic to pasta? #rip to the people who followed me for intellectual breakdowns of systemic issues #i dont think the pictures are funny to anyone but me #but i enjoy it #disability #ehlers danlos syndrome #salt baby talks #chronic illness #postural orthostatic tachycardia syndrome #mast cell activation syndrome #mcas

[salt-baby]

yknow I think I was just tempting fate at this point

[Image ID: A discord screenshot, reading "10/10 anaphylaxis, would react again" with reply "whoops." The reply was sent "Yesterday at 10:33 PM" and "March 17, 2024" is cut off at the bottom. The profile picture and username have been scratched out in white. ./. End ID]

[Image ID: A screenshot of a Tumblr tag, reading "#ER speedrun any%". Other tags have been cropped off. ./. End ID]

[Image ID: An edited screenshot of an Xbox notification, reading "achievement unlocked ER visit" ./. End ID]

I'm fine now but that was a thing

#is it funny? probably not #am i gonna enjoy being able to laugh about it before the bill and my allergists next steps hit me? #absolutely #I cannot fucking believe i foreshadowed this that hard #salt baby talks

[salt-baby]

[Image ID: An edited screenshot of an Xbox notification, reading "achievement unlocked ER visit" ./. End ID]

I'm fine now but that was a thing

#anaphylaxis was the cause #they admitted me so quickly too??? #i dont think they realized how much i understood about the medical jargon and screens around me #but they did think i was very polite. so. #lets hope my allergist knows what the fuck is going on because i dont and now im reintroducing foods to my diet #by having a very small portion waiting two hours for a reaction and then deeming it safe #i wasnt there for very long at least #i did get the 'thats odd' from a medical professional tho which was fun #i didnt realize how severe it had gotten until i was changing into the gown #scary. #anyway #disability #chronic illness #salt baby talks

[salt-baby]

[Photo ID: an Xbox notification reading "Achievement Unlocked" that has been edited to read "Achievement Unlocked: Adverse Reaction" ./.]

this asthma has HANDS and my newly prescribed inhaler was just a potion of instant sick

#'paradoxical bronchospasm' apparently #starting to get real nervous about this #i think the doc will go for prednisone next #and after that? then what? #ER speedrun any % #im miserable but life is ok because i am NOT allergic to my cat #disability #ehlers danlos syndrome #chronic illness #postural orthostatic tachycardia syndrome #salt baby talks

[salt-baby]

canes are really good for people who don't have shoulder or wrist problems, but do have a "bad side" or balance issues

I do own one, but because my knees are equally bad, I use it only on days when I've done damage to one side or my POTS has me feeling a little unsteady.

instead, knee braces and an si belt have been most beneficial for me. those can be more expensive than a cane, and therefore less accessible, but my knee orthotics were worth every penny and then some.

EDS havers who use aids

How many of you use canes and do they help? I'm really anxious about the one I just bought since most my pain is in my hips and knees. I want input from the masses if at all possible

#if youre looking at otc knee braces i used to use BodyProx ones #with the metal hinge and kneecap donut #this isnt to say a cane isnt the best option for you #it very well might be #but for me knee braces suited my problems better #salt baby talks

[salt-baby]

how concerning is it that your doctor responds to your MyChart message in 30 minutes and has you in for an office visit two hours later? asking for a friend

#ive been informed my allergies are 'robust' #poor little med student looked at me like it was crazy when i ran them through how i control my allergies #mask outdoors wipe off pollen everytime i go inside change clothes and shower as soon as i get home #that doctor also has me on actually five different allergy medications not including the epipen #and i cant even be mad about it because they're very competent #oh yeah and allergy shots #people around me really dont seem to understand the severity or how much this impacts me #allergies just seem to be especially brushed off #ive been a little bummed about the whole allergy thing tbh #it sucks #disability #chronic illness #salt baby talks #oh yeah and i was mysteriously tachycardic at rest again #120 bpm after sitting for a while is NOT my normal

[salt-baby]

Putting my joints back in place and calling it EDSMR

[salt-baby]

figured out wiggly text so updated the eds meme lol

[wiggly text/word art that says "ehlers danlos syndrome? more like loosey goosey ligament predicament amirite? 😎" with some tangled spaghetti noodles that say "this is u". starry pastel ombre background]

#oh the group chat is gonna LOVE this one

[salt-baby]

my elaboration on ethics is here, and my elaboration on the selection process is here.

regarding financial stressors, I've reblogged a response from a doctor on that.

I've addressed a few of the others briefly in the comments or reblogs, but I felt those were relatively straightforward or that I didn't have much to add to that conversation. I'm happy to clarify or answer questions if you have any, though.

yes, doctors suck, but also "the medical ethics and patient interaction training doctors receive reinforces ableism" and "the hyper competitive medical school application process roots out the poor, the disabled, and those who would diversify the field" and "anti-establishment sentiment gets applications rejected and promotions requests denied, weeding out the doctors on our side" and "the gruesome nature of the job and the complete lack of mental health support for medical practitioners breeds apathy towards patients" and "insurance companies often define treatment solely on a cost-analysis basis" and "doctors take on such overwhelming student loan debt they have no choice but to pursue high paying jobs at the expense of their morals" are all also true

none of this absolves doctors of the truly horrendous things they say and do to patients, but it's important to acknowledge that rather than every doctor being coincidentally a bad person, there is something specific about this field and career path that gives rise to such high prevalence of ableist attitudes

and I WILL elaborate happily

#salt baby talks

[salt-baby]

I think maybe something I didn't make clear enough with the original post is that, really, I'm not talking about the broader systemic issues (of which there are many) but instead of the specific phenomena of doctors being far more ableist than the general population.

That kind of ableism isn't the "my clinic visit cost a lot and that places undue burden on the disabled" or "my doctor had only fifteen minutes with me, and treated me briskly". though those are important problems to address!

but I meant more "I can't walk anymore and nobody can tell me why and my doctor just told me it's because I'm lazy" or "hysteria was recorded in my chart" or "my doctor scoffed at me and called me a Google doctor/doctor shopper" or "my doctor has this ideology about as few drugs as possible but I need all of mine to survive".

this specific problem, in which doctors hold the false views that disabled people are lazy, unproductive, hysterical, liars, and not in as much pain/strife as they say they are, that's the ableism I'm getting at. when I worked retail I got tons of shitty comments from customers - but they pale in comparison to what doctors have dared to say to me, despite the fact that they really should know better.

this problem is an invisible one. if you're not disabled yourself or very close to someone who is, this isn't a side of the medical system you see. to the average person, your doctor may be an ass, but has never obliquely implied you'd be better off dead. the scale of this is horrifyingly severe - people are surprised when I tell them disabled people don't have full human rights.

you're right, in that the system probably needs a pretty extensive overhaul. but I think we both would agree that's an impractical solution, too expensive and too radical to be feasible. instead, the hill i die on is telling as many people as possible this problem exists, and trying to give disabled people the medical education and political understanding they need to navigate this broken system safely.

yes, doctors suck, but also "the medical ethics and patient interaction training doctors receive reinforces ableism" and "the hyper competitive medical school application process roots out the poor, the disabled, and those who would diversify the field" and "anti-establishment sentiment gets applications rejected and promotions requests denied, weeding out the doctors on our side" and "the gruesome nature of the job and the complete lack of mental health support for medical practitioners breeds apathy towards patients" and "insurance companies often define treatment solely on a cost-analysis basis" and "doctors take on such overwhelming student loan debt they have no choice but to pursue high paying jobs at the expense of their morals" are all also true

none of this absolves doctors of the truly horrendous things they say and do to patients, but it's important to acknowledge that rather than every doctor being coincidentally a bad person, there is something specific about this field and career path that gives rise to such high prevalence of ableist attitudes

and I WILL elaborate happily

#also this isnt to say that you missed the point of the post or anything #just that the scope of the conversation im trying to have is much narrower #and rather than a massive tumultuous expensive overhaul of the medical system #i instead want to make change in a grassroots sort of way by helping the people directly around me #thats my ideology for this kind of thing

[salt-baby]

yes, doctors suck, but also "the medical ethics and patient interaction training doctors receive reinforces ableism" and "the hyper competitive medical school application process roots out the poor, the disabled, and those who would diversify the field" and "anti-establishment sentiment gets applications rejected and promotions requests denied, weeding out the doctors on our side" and "the gruesome nature of the job and the complete lack of mental health support for medical practitioners breeds apathy towards patients" and "insurance companies often define treatment solely on a cost-analysis basis" and "doctors take on such overwhelming student loan debt they have no choice but to pursue high paying jobs at the expense of their morals" are all also true

none of this absolves doctors of the truly horrendous things they say and do to patients, but it's important to acknowledge that rather than every doctor being coincidentally a bad person, there is something specific about this field and career path that gives rise to such high prevalence of ableist attitudes

and I WILL elaborate happily

[salt-baby]

this video was helpful to me:

https://youtu.be/sFMEmG6YKDI?si=Zb-NOZA47nx1qrCk

Hey um, how do you walk with a cane?

#very rarely do i use a cane because very rarely are my problems unilateral #but i like having it as an option esp for when my orthotics are refurbished #theyre so much cheaper than i thought theyre like 20$ #salt baby talks

[salt-baby]

stretched and the little trainee behind me went "oh my god are you double-jointed or something?" and somehow they picked up I was disabled but had evaporated the whole hypermobility part of it from their memory

#i turned around and was so bewildered #bestie i have talked about this constantly #tbf it was a really striking example #stretching my shoulders which are my most stable and therefore im most reckless with em #disability #ehlers danlos syndrome #chronic illness #salt baby talks #hypermobile ehlers danlos syndrome #heds

[salt-baby]

your medical post made me think about anti-VCUG activism happening now /pos are you familiar with the procedure?

I was not before you mentioned it to me!

it's a difficult situation. on the one hand, the concept of children undergoing the kind of trauma described in that kind of activism is blatantly horrific. especially because I've undergone traumatic imaging tests myself. but on the other hand, as someone who fully understands the application of cystometry, it's extremely difficult to do away with the test entirely.

even then, I think there are ways to mitigate the associated trauma. in many cases doctors don't explain what's about to happen well enough to adults, much less to children. part of the problem is I didn't know what I was in for when I agreed to the exam, and was completely unprepared for what it entailed. to my doctor, it was just the next step, their favorite diagnostic method for my symptoms. how a test feels to undergo never factored in.

and yet, for me, a supportive nurse there to hold a bucket out for me and apologize for the discomfort made a world of difference. and so I think if this is a test we cannot remove completely, then the attitude around it and the way people are followed up with afterwards needs to change. if, in the days after, someone had called me and said "many people are upset by this test, are you alright?", I think it would have helped. even if only to make sense of what I was feeling.

I think this activism is good, and beneficial. patients or their parents should be informed that many people go on to later uncover trauma from this test, so they can more accurately weigh whether it's worth the answers they're trying to get. with my experience as the basis, I don't trust hospitals to be invested in disclosing this.

thanks for bringing this to my attention!

#salt baby talks #salt baby answers