#Medical PTSD

[4spooniesupport]

[pidgwin]

The treatment for a missed miscarriage, a miscarriage where the fetus has died but the body hasn’t realised, is abortion. Either through surgery or medication. 

I was told at my 12 week ultrasound that my baby had died 4 weeks before. I have dreamed of becoming a parent for my whole life. Those few weeks I was pregnant were the happiest of my life but the second I knew my baby had died, I felt like the living embodiment of death. I felt like a walking coffin, distinctly inhuman. Dirty down to my very soul.

I was desperate to get the beautiful child I had wished for so dearly out of my body. The 24 hours between my ultrasound and being given abortion medication were some of the hardest of my life. Abortion is healthcare. I cannot even imagine being forced to carry my baby for another moment. I also can’t imagine being forced to carry a fetus, which you do not wish to. To take that right away is disgusting and demonstrates how truly little these people know about the reality of reproductive healthcare. Pro choice always.

[mandana-the-service-pup]

Denying a patient the right to a diagnosis just bc the disorder you suspect they have doesn’t have a cure is ableist and abuse of power.

Patients have the right to know what is going on with their body. If you aren’t prepared to help them, there is an entire community who can provide them with the knowledge & skills you lack (symptom management, clinical trials, latest research, emotional support, list of specialists and treatment options, etc).

The least you can do is give them the diagnosis.

[clatterbane]

While I am evidently on a ranting roll tonight, it also really fucking bothered me that the new endocrinologist that I happened to see for a routine yearly diabetes check-in a few weeks back, after the last one moved? She apparently decided that as essentially an ethnic minority of one here, I look weird enough that it might well be pathological.

(I would probably feel a little different about it if she weren't also from anothet ethnic minority--albeit one that is MUCH more common locally and in this country at large. It doesn't hit quite the same that way, but I still found it pretty damned offensive.)

It also didn't help that my basic build helped get me treated like garbage so much under the NHS--with definite racial undertones at times. I would just as soon never hear a single word about my meat form again, which is not very directly relevant to the issue I have come in over, and in a non-fatphobic way.

But yeah, I have ended up looking like a lot of my mother's family in middle age. If one of the thinner versions these days.

Shitty crop of me with my mom, 20 years and at least 50 lbs. ago.

We have big kinda flat faces with barrel chests and big shoulders--and our arms and legs also turn skinnier-looking by comparison to the big old torso as we get older. No matter how much meat is over it (and I am still fairly scrawny now!), you are still gonna be mostly shoulders and a ribcage which is NOT dainty. Mr. C half-laughingly backed me up that half my family is just Like This, and he hasn't even seen all the extended clan together.

And the (very) extended family resemblance kinda goes farther than that. (Thus the ethnic part being very fucking relevant.) I don't always necessarily like it, but that's just how we're made.

So yeah, that new endo decided to send me to be tested for Cushing's Syndrome, entirely based on eyeballing.

Look, it's me! Go off, I guess.

(She also asked some pointed questions like whether my freakishly skinny arms made it difficult to wheel myself around in the chair. Erm, NOPE, not at all. Absolutely no symptoms other than striking her as Wrong Looking. She also recorded in the notes which I can see online, that I was getting less exercise than I said I was--very possibly mentally filtering my actual answer through that Freakish Twig Limb perception.)

What gets me even worse is that I DO totally coincidentally have experience with Cushing's, from when I got that pituitary tumor in my teens. She knew nothing about this when she brought the subject up out of the blue.

As the first medical professional to ever do so over the past 30-odd years, I might add. Nobody who has actually been aware of that history has triggered on it either.

Cushing's is very noticeable and very hard to live with! I got extremely sick, gained like 80 lbs. over a year from it, and developed the actual corticosteroid moonface then! Nobody much wanted to listen to me at the time, likely mostly because AFAB teenager! But, I do know very well what that fucking feels like!

But yeah, that thankfully got fixed and I haven't experienced symptoms for like 30 years. That whole experience was also very freaking traumatic, which is probably not helping my reaction now with it getting brought back up so bizarrely and unexpectedly. (Also, could I somehow be secretly Very Sick now without realizing it?! I do very much rationally doubt it, but doubt still keeps nagging at me.)

I guess I had better play along for now. In a way, it is good to see another demonstration that they don't seem to do the same kind of foolish pennypinching here as under the NHS. They will refer you for whatever testing they think is necessary, even if that sometimes includes a labwork wild goose chase based on some terrible assumptions! I would rather have them be thorough, even when it's dumb as hell and kinda insulting.

I am indeed pretty confident that I just look like a middle-aged $SURNAME from another freaking continent, who is also recovering from malnutrition and still pretty scrawny. (Which the doc was aware of.) I am also still feeling some kind of way about this fact setting off weird alarm bells in some new doctor that I am stuck dealing with for the foreseeable future.

I could easily make some of my own unflattering speculations based on her appearance, which was very different from my own. Sorta Marfanoid, with buggy eyes possibly indicating thyroid issues? (Maybe there's also some wider ethnic thing going on there too, for all I know. I have seen a lot more folks from her part of the world than basically anyone here has from mine!)

But yeah, that really really would not go over too well. And it's not my place either.

[shitcomscriptwriter]

Growing up in and out of psychiatric hospitals and offices really ruins your sense of self.

There was very little I could hide. Every bit of me was picked apart and scrutinised, used as a teaching tool for eager students with no regard for my own feelings or opinions.

I have very few genuine emotions now, because of how many realities were constructed for me and how they presented me like I was their newest accomplishment. No part of my brain was my own.

I am a psychological cyborg.

It feels like they took my humanity and all natural reactions, but I know they didn’t. There is still a human in here, and she is screaming.

[disabled-culture-is]

disabled culture is having medical ptsd and sobbing even at the possibility of going to the hospital again

-+-

[nerium-aquifolium]

Sweet perpetually abused Melora. That post traumatic sure does stress.

[amusementofaprincess]

I should be sleeping-I have a psych appointment at 8am tomorrow and it’s 11:45 and I have to get up at like 6. My psychiatrist isn’t far but I’m not a fan of get up and leave immediately.

Why I took an 8am appointment I don’t know.

But I am regretting my choices every minute my clock gets closer to midnight. At least one topic I want to bring up is how much I have not been sleeping lately. But that doesn’t help me now. I’ve been gotten maybe 10 hours sleep in the last 4 days.

[foor-beem]

having medical PTSD from my emergency surgery earlier this year is fucking ruining my life, every time i get stomach pain or cramps or anything vaguely similar to what i felt before i went to the hospital and my brian just goes YOU’RE DYING AGAIN YOU’RE DYING AGAIN YOU’RE DYING AGAIN until i just short circuit

[4spooniesupport]

[little-pissbaby]

as always, we're complaining under the cut. tw for medical PTSD, mentions of medical procedures, personal/graphic descriptions of my fucked up little body, extremely privileged whining, it's worth it for the cat at the bottom tho

I am exhausted by the number of appointments I have. I've become the kind of person who has multiple appointments every single week. This week and next week are three appointment weeks, and those appointments always lead to scheduling MORE test/procedures/office visits.

I had an appointment with my urogynecologist. Given my history of neurogenic bladder and severe stage IV endometriosis, she's in agreement with me that it might be time to at least consider a bowel diversion, if not a total colonoscopy. This would be done in addition to a bladder diversion because self-catheterization has proven unsustainable and, frankly, dangerous for me to try to continue. I'll likely have a foley placed tomorrow morning that will stay in until I can get in to the urological surgeon, who has not called to schedule yet. I have the colorectal surgery consult next month and the neurourology consult a month after that. Just thinking about it gives me a headache.

I also have an EEG in a few days to see if the blackout episodes I've been having are epilepsy, and if it is, I'm not sure what we'll do since I'm already on a good amount of anticonvulsants. I have a feeling I'm going to leave that test with a migraine and no answers, which was exactly how the EMG/NCS I had done in my hand last Friday went.

Other things I've started include using a CPAP machine. I thought this shit was supposed to help you sleep better, but instead I'm waking up many many times in a two hour window, the pressure being pushed into my lungs is dislocating my ribs, I'm getting bloated from wearing it, and the pressure is coming out of my eyes and ears too due to a deformity in my inner ears called patulous eustachian tubes, so now my constant migraine is back in full force. I'm nothing but bloated and irritable as hell, but if I don't use it for at least four hours a day for at least 24 days a month, medicaid won't pay for it and I will have to pay out of pocket to buy the machine. My mother price checked it, it costs ~$1300 to buy the machine I have. I might just give up and give it to my brother, who also needs a CPAP but who doesn't also have EDS and is, therefore, not prone to ribs dislocating.

I met with my 4th electrophysiologist and that was a frustratingly and dangerously nonproductive appointment. He did not speak or understand spoken English well enough to be allowed to practice medicine in an English-speaking country imo. I don't give a shit about an accent, I don't think people need to "go back to where they came from" or that they need to speak English exclusively, but man it is so important in the field of medicine to be able to actually understand what your patient is saying to you. He had no idea what the condition I have even was, and he assumed I made all of these diagnoses for attention but would "humor me" and wrote IN HIS NOTES that I "insisted" on a holter monitor and tilt table test. I got these orders from Duke university, the closest university to me that has a genetic electrophysiology department and a dysautonomia clinic, both of which I was being seen at until Duke stopped taking my insurance. I was trying to tell this absolute worm brain that I was telling him what the top specialists GLOBALLY told me to have done, but I was just being young and attention-seeking I guess, I'm so dangerously angry about it, it makes my chest hurt to try and articulate just how badly this EP fucked it up for me.

I realized in the middle of a visit with my PCP on the 30th that I am not working towards a goal. Most people go to the doctor with the goal of Get Better Enough To Work, or Get Better Enough To Take Care Of The Kids. I don't have that. I'll never be able to hold down a job and I can't and don't want to have children.

I feel like the shittiest friend on Earth too because a good friend of mine only lives four hours away, but as much as we'd both like to visit, I have to schedule everything in my life around what's starting to look like a year packed with surgeries. I can't just pack up and go visit him, I come with medical equipment now. Between meds, splints, incontinence supplies, and the CPAP, I have to basically haul around a small urgent care center everywhere I go. I hate that I have to be planned around.

For a few wins, I do not have carpal tunnel, and when I had my A1C checked at my last PCP appointment, it was 4.9! Every doctor who finds that out informs me even their own A1C isn't that good because they like some specific sweet treat too much. My secret? No one has said they liked something that doesn't have dairy in it, and I've had a dairy allergy since birth.

anyway. I turned 26 just over a month ago and my beloved medical advisor turned 1 year old the same day. she's my birthday buddy :) it's weird having an Adult Cat in the house now, she's not the teeny tiny kitten that sneezed in my eye and gave me pinkeye anymore.

thanks 4 reading, besties. until my next frustratingly whiny and Packed Full of Info update <3

pictured: my big adult girl and medical supervisor 🥰

[pidgwin]

As someone who has had a very traumatic miscarriage of a very wished for baby, I am still pro choice. I still support people who choose that for themselves. I still think people should have safe access to reproductive choices. I am sick of seeing people who have experienced miscarriage projecting their feelings onto people who are not in their shoes. Your infertility has no place in the discussion of anothers reproductive rights. Get the fuck out of the conversation.

[mandana-the-service-pup]

Some appointments are scarier than others. Waiting for the appointment is scary. Going to the appointment is scary. Waiting for results is scary. Doesn’t matter how many times you do it or what your past results were. I’ll never judge anyone for being nervous about an appointment 🥺

[clatterbane]

Me, due for another outpatient full general anesthesia gastroscopy session in the morning. 😩

[shitcomscriptwriter]

TW Psych trauma

Throwback to when I was nine years old and involuntarily sent to the ER for having an imagination, put on an incorrect dosage of medicine, separated from my mother because it’s “policy”, and was left to scream for two fucking hours by nurses who looked at me like I wasn’t even human.

I was treated like a goddamn animal, put in these paper thin scrubs that made my autistic self feel overwhelmed, vulnerable, and exposed, and kept in a curtained off alcove in an ER that basically resembled a dark parking garage.

The only person who even attempted to comfort me was a CNA who was very obviously trying her best, asking me “don’t you want to go to sleep now, honey? You have bags under your eyes.”

(The eye comment may have been rude, but she meant well and even my hysterical child self knew that so leave her alone. Hope she’s doing well 💖)

To think this happened at one of the top ten hospitals in the United States of America. Shame.

[imaginarylungfish]

after recovering from my chronic illness (ie. i only have flares like 1-2x/yr instead of symptoms every day), i see how damaging it was to my psyche to not be believed as sick by doctors and my family at first. that set my recovery back so much. it made me second guess myself and dismiss my pain so much so that even to this day (about 3 years since daily symptoms) i don't have a good idea of when i'm too sick to go to work. (ie. i just push through when i should probably rest.)

that experience of people invalidating my pain just made me default to always believing someone when they say they are hurting. physically or emotionally. sure, they may not realize their pain isn't as bad as others' pain but why do we need to compare? their pain is still bad enough. their reality matters. their pain matters.

comparing pain seems really useless ~most of the time~. (of course, there are instances where we must triage or put someone's needs above our own, but that's not ~most of the time~.)

example: at my work this week (i work at a nature center where we lead field trips for elementary school kids), my coworker asked if someone else could greet the school when they arrived because her asthma was bad. my asthma was also bad that day and i was having an mcas flare, so i turned to see if another coworker would step up. one did and things worked out fine.

my coworker with asthma and i did not need to compare our pain to see whose was worse and more "worthy" of sitting out. we just passed the job onto someone else. our other coworker helped out and picked up the slack (as will we when someone else needs us to step up).

so, i just don't see that much good come from comparing pain. i've had people over the years try to tell me their pain is worse than mine, as if it's a contest. that feels super shitty and invalidating. (i understand those people are probably just trying to get their pain validated, but sometimes i don't have the capacity for that when i am also in pain.)

pain isn't a zero-sum game. just because i'm in pain doesn't mean you aren't. we can both be in pain. and we can both help each other in/with our pain.

so, i guess what i'm trying to say is that it seems like validating people's pain is better than the alternatives. i don't know what other people feel unless they tell me. so, if someone is telling me they are in pain, who am i to tell them they are wrong?