cilantroodon

[cilantroodon]

Butter PIE! 🧈🥧

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bye gongeous (seals you in the tomb forever)

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Literally any show can be improved by adding more older women. Not many know this, but it’s true.

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thanks for posting things for me to look at

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*sweating, whole body shaking while I stare at a google doc* would he fucking say that????

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does anybody else have a discord server thats only yourself and nobody else exclusively used to send images from your mobile phone to your tablet or computer

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with rare disease day coming up, i want to say a little about some of the obstacles that i have faced specifically because of the rareness of my disease. i am the 64th case in recorded medicine of my condition.

i do not feel safe naming my condition publicly due to its rarity. as in, this is my most well-documented disability, meaning that it appears on all my medical paperwork and my disability paperwork. my employers all know about it, and how rare it is. my mom tells everyone who will listen about my condition. i've had to tell pretty much every medical professional i interact with all about it. for that reason, if i were to name it online, anyone who rode in a lyft with my mom, or any pharmacy tech who's ever processed even unrelated meds, or my irl former boss, would immediately know it was me. i don't have any privacy about my condition irl. i'm visibly disabled, and it is very hard for me to avoid the kinds of assumptions that people make about my body.

i have to be an ambassador for my condition to every doctor i meet. they look at my chart, and ask me what that name means. i have to explain what it is, how it works, what the impact is on my life, what causes it, and what the treatments are. this includes with specialists in the organ system it effects, because...

because there are no specialists in my condition! there is a specific research hospital that has treated some patients with my condition, but even the doctors who treated me there were actually specialists in a totally different disease! i was actually nearly turned away from their clinic because my tests were negative for their actual specialty, and my mom and i had to repeatedly explain that no we weren't there for that, we were there for one specific doctor that had done some research ten years ago on a condition that nobody else in the hospital had even heard of before. again, being an ambassador for my condition that i was hospitalized for, on the verge of dying from it

insurance. my condition does not have an insurance code. insurance codes are used to approve treatments for each disease. for example, if you have the code for iron deficiency anemia written in your chart, then you can get approved for iron infusions. but there isn't a code for my condition. so when i became iron deficient due to complications of my condition, they couldn't approve me for infusions until my iron deficiency became severe enough that it could be diagnosed as full blown anemia. they basically had to list one of my complications as its own condition in my chart, because at least that had an insurance code, to get me in to see any doctors at all.

medications. medications in the USA, where i live, are protected by patent and developed to be shared on the free market. that means that if you don't have enough "consumers" for your medication, there's no demand, and therefore no motive to sell it. when a medication was developed for my condition, that improved QOL and helped slow progression, it was never even submitted to the FDA, because there was no demand. this means that not only is this medication not listed as covered by literally any insurance company, but it is not produced commercially. i have to order a thirty day supply from a "compounding pharmacy" where they make the medication custom for each order, and then ship it to me every month. i have to pay out of pocket for it every single month.

being a specimen. frankly this part doesn't bother me, because if i can contribute to research, then hopefully other people won't have to suffer from it like i have, but part of my treatment has always been participation in research. i make living tissue donations, where whenever biopsies are taken to check progression/if my meds are working, i donate extra to be used for research purposes. when i die, i plan to donate my body to the specific research team that wrote the one paper on my condition that exists. but there's not much research on my condition at all. when i met with the research team, they gave me a ton of materials for the more common condition that i do not have. i'm worried that when my current doctors retire or move on, nobody will continue the research, and my condition will remain difficult to treat and mysterious to medicine.

i have a condition that i will never see in a positivity post. i have never met another person with my condition, and i don't ever expect to. there are no support groups for people with my condition, no discord servers, no facebook pages. but i'm not in this alone. there are lots of people who also have "case study level" illnesses (illnesses that aren't common enough to do larger scale research on). and hopefully with healthcare reform and disability activism, we can lift each other up.

other people with rare diseases, i love you!

[cilantroodon]

me making my oc a worse person

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Hospital Lengths of Stay

I think people outside the USA severely overestimate how long hospital stays are here.

Like, appendectomy, right? That's maybe 24-36 hours door-to-door if there's no complications. If the appendix actually burst it might be 3 days, but only because they're giving you IV antibiotics and setting up home care to do that at home would take longer than just keeping you in the hospital.

A scheduled surgery like a hysterectomy, cholecystectomy, mastectomy, or anything else they can do laparoscopically (though small "keyhole" incisions)? You're probably not staying overnight at all.

Planned surgeries that need some kind of after care (like bariatric surgery, knee replacements, hip replacements, total vaginal hysterectomies, bladder lifts, etc...) would be usually 1-3 days.

Minor heart attack? 2-3 days.

Fracture and surgical repair of a large bone (like the femur)? About 2-3 days.

What about the exacerbation of a chronic illness like asthma, COPD, heart failure, or hypertension? IF they admit you (not just stabilize and discharge from the emergency department), it will be generally less than about 3-5 days.

Gunshot wound to the abdomen with surgery to repair things? 3-5 days.

And a stroke, sepsis, gunshot wound to the chest, or major heart attack? That would be somewhere in the 5-7 day range.

Severe trauma with multiple severely broken bones and relatively extensive surgery? This might be somewhat longer, but usually for nursing and pain control reasons rather than the surgery or injuries themselves. 1-3 weeks would be usual.

In the hospital for a mental health reason like decompensated schizophrenia or major depression? A little less than a week is normal, though some people stay several weeks if medications aren't working well.

The people who stay in hospitals for weeks or months typically have whole systems that don't work, or are waiting for a major organ transplant. For example, I had a patient once whose entire abdomen was open and couldn't be closed surgically. She was on TPN (IV nutrition) and IV antibiotics and needed massive amounts of wound care done every hour or so because her intestinal contents were spilling out of her open abdomen. She was there for months and ultimately didn't make it.

Are there people who stay longer than these cases? Of course! These are just averages pulled from medicaid data and personal experiences, based on patients who are coming in relatively healthy. Patients who have other significant health problems usually stay longer than patients who come in with a single problem.

But if you are otherwise healthy except for the reason you came into the hospital, unless you fell off a building or were in a massive car accident you are probably not staying in the hospital very long at all.

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rambling again abt sensationalization of cults because this comes up whenever i discuss the fact that I was raised in one, but... like many other forms of abuse, i think there ends up being a popularly conveyed idea of an "outside world" where there's going to be unambiguous freedom. and don't get me wrong, being outside a cult or any other abusive environment is way better than being inside one, but you get outside and if you have eyes you notice the ways that society is abusive and coercive. you notice the ways your personhood gets curtailed by things by school & work & government. the idea of the cult being a sensational, unique outlier is at best a comforting lie told by people who don't want to notice parallels, and at worst, I can't help but see it as an intentional scapegoating of cults and of abusers to distance broader society from being implicated in having caused similar harm. don't fall for it. a cult is an intensifier of patterns that already exist. abuse is an intensifier of patterns that already exist. it is absolutely not unique lol!

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kind of getting sick of this (honestly kind of masturbatorial at this point) insistence that STEM students are bad at [analyzing the news/undertsanding history/thinking about the consequences of their actions/INSERT YOUR OWN CRITIQUE HERE!] because they Didn't Pay Attention In English Class. come on now. i know plenty of people who paid attention during the class reading of Lord of the Flies and 1984 and Catcher in the Rye and still came out the other end repping crypto and Elon Musk, and i know even more people who didn't and didn't, respectively. stop idolizing 10th-grade-level literacy and accept that "smart" people do dumb shit on the reg or your worldview is going to get increasingly warped until you do something totally off the wall like imply that "knowing about the existence of unreliable narrators" would stop people voting republican

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Kitty ❤️

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I think it'd be neat if during discussions about schizophrenia and psychosis more people made a point to mention how psychotic episodes themselves can be deeply traumatizing. because they sure can. experiencing a break from reality like that is traumatizing. delusions, even though they aren't real, are traumatizing. believing you're being prosecuted by God himself and not knowing how to cope with that just to later realize none of it was real is probably traumatizing. experiencing frightening hallucinations can be traumatizing. people talk about how psychotics suffer from their disorder but let's talk about why we do. and I haven't even mentioned the inherent trauma of living with a stigmatized disorder in a world where psychotics are despised and shunned and kicked out of homes. lets not forget that one.

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people who enter my home will be shown an assortment of objects

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leg day & the second day of your period should NEVER coincide. it should be cosmically prevented by benevolent spirits & the like

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[ID: A makeup look with lines radiating around the eyes and over the eyebrows to look like huge lashes, and fake eyebrows drawn over that. The lipstick and blush are bright red and appear to be painted on and peeling. End ID.]

Vivienne Westwood Spring 2015