HEV MK.IV'S NUMBER ONE FAN

Tablets sink and capsules float. Separate out your tablets and capsules when you go to take them. Tip your head down when taking capsules and up when taking tablets. Liquigels don't matter, they kinda stay in the middle of whatever liquid is in your mouth.

If your pill tastes bad, coat it with a bit of butter or margarine. I learned this from my mom, who learned it from a pharmacist.

Being in pain every day isn't normal. Average people experience pain during exceptional moments, like when they stub their toe or jam their finger in a door, not when they sit cross-legged.

Make a medical binder. Make multiple medical binders. I have a small one that comes with me to appointments and two big ones that stay at home, one with old stuff and one with more recent stuff.

Find your icons. Some of mine include Daya Betty (drag queen with diabetes), Stef Sanjati (influencer with Waardenburg syndrome and ADHD), and Hank Green (guy with ulcerative colitis who... does a bunch of stuff). They don't have to be disabled in the same way as you. They don't even have to be real people. Put their pictures up somewhere if you want; I've been meaning to decorate my medical binders with pictures of my icons.

Take a bin, box, bag, basket, whatever and fill it with items to cope with. This can be stuff for mentally coping like colouring books or play clay or stuff for physically coping like pain medicine or physio tape.

Decorate your shit! My cane for at home has a plushie backpack clip hanging from the end of the handle and my cane for going places is covered in stickers. All of my medical binders have fun scrapbooking paper on the outside. Sometimes, I put stickers and washi tape on my inhalers and pill bottles. I used my Cricut to decorate my coping bin with quotes from my icons, like "I've seen enough of Ba Sing Se" and "I need you to be angrier with that bell".

If a flare-up is making you unable to eat or keep food down, consider going to the ER. A pharmacist once told me that since my eye flares can make me so nauseous that I cannot eat, then I need to go to the hospital when that happens.

Cola works wonders for nausea. I have mini cans of Diet Pepsi in my coping bin.

Shortbread is one of the only things I can eat when nauseous. Giant Tiger sells individually-wrapped servings of shortbread around Christmas or the British import store sells them year-round. I also keep these in my coping bin.

Unless it violates a pain contract or something, don't be afraid to go behind your doctor's back to get something they are refusing you. I got my cardiologist referral by getting in with a different NP at my primary care clinic than who I usually saw. I switched from Seroquel to Abilify by visiting a walk-in.

If you have a condition affecting your abdomen in some way (GI issues, reproductive problems, y'know) then invest in track pants that are too big. I bought some for my laparoscopy over a year ago and they've been handy for pelvic pain days, too. I've also heard loose pants are good for after colonoscopies.

Do whatever works, even if it's weird. I've sat on the floor of the Eaton Centre to take my pills. I've shoved heating pads down my front waistband to reach my uterus.

High-top Converse are good for weak ankles. I almost exclusively wear them.

You can reuse your pill bottles for stuff. I use my jumbo ones to store makeup sponges and my long skinny ones to hold a travel-size amount of Q-Tips.

Just because your diagnostics come back with nothing, it doesn't mean nothing is wrong. Maybe you were checking the wrong thing, or the diagnostic tool wasn't sensitive enough. I have bradycardia episodes even though multiple cardiac tests caught nothing. I probably have endometriosis even though my gynecologist didn't see anything.

You can bring your comfort item to appointments, and it's generally a green flag when someone talks to you about it. I brought a Squishmallow turkey (named Ulana) to my laparoscopy and they had her wearing my mask when I woke up. I brought a Build-A-Bear cat (named Blinx) to another procedure and a nurse told me that everyone in the hall on the way to the procedure room saw him and were talking about how cute he was. Both of those ended up being positive experiences and every person who talked to me about my plushies was nice to me. If you don't feel comfortable having it visible to your provider during the appointment, you can hide it in your bag and just know it's there, or if you're in a video appointment, you can hold it below frame in your lap.

Get a small bucket, fill it with stuff, and stick it in your bed (if you have room for it). I filled a bucket with Ensure, juice boxes, oatmeal bars, lotion, my rescue inhaler, etc. in October 2023 in anticipation of my laparoscopy and I still have it in my bed as of January 2025.

If your disability impacts your impulse control (e.g. ADHD, bipolar disorder), you should consider setting limits around your spending -- no more than X dollars at a time, nothing online unless it's absolutely necessary, and so on. Or, run these purchases by someone you trust before committing to them; I use my BFF groupchat to help talk sense into myself when I buy stuff.

this is my own flowchart I made for managing executive dysfunction and task initiation with ADHD. It’s *really* complicated so might be too overwhelming for some folks, I just like it like that myself because it’s thorough! I have this printed out in multiple places around my home that I tend to get stuck.

Counterargument: that is way too much data unless it’s on a crystal storage matrix or whatever that those Bay Area guys still have not iirc perfected. The internet is probably a vague sketch of itself, missing most video and images.

- Just about every piece of media Stratt could conceivably get her hands on, especially prioritizing scientific texts, but with no particular discretion to what might actually be useful.

- Enough of the internet (whatever that means) in addition the scientific texts that Eric could significantly advance themselves scientifically and technologically. Unclear how different this is from the science texts.

- Basically every video game that could conceivably be put on the Hail Mary and was available at time of planning. There was canonically frivolous stuff on there too. This is also evidence for them having the crazy storage required for video and images.

- Heroin

- Gun

Other Counterpoint: Stratt REALLY didn’t want people getting it on on the Hail Mary. She originally wanted the crew to be all straight men she was so worried about this. It’s possible porn would be the one area of media she WOULD exercise restraint for.

If “enough of the internet” is a direct quote then it was presumably scraped or stored without porn as a priority, so it’s possible that VERY basic website categorization filters were used to screen for pornography/adult sites as irrelevant to the scientific endeavor. I will allow this (since too much utterly irrelevant stuff would at some point compromise the archive’s utility/indexing/searchability).

For those curious it’s Sylvester McCoy

but i have never in my life seen a post saying to support masculine trans girls and trans women or trans girls and trans women who like traditionally masculine things and its really important to understand that showing support for trans women in any form is just as important as showing support for trans men so please, please reblog this.

For reference, here's a full bibliography of bad* [tumblr]* posts which were incorporated into the above comment:

@velvetdemon I'm doing a full reply because I want to give this question the time and space it deserves, and I really do appreciate your curiosity about this.

The short answer: It is deeply unethical. There are nowhere near enough willing patients in the world to be able to do this, and it would be criminal to put them through this.

The long answer: The one side of the equation you're focusing on is: how much of a drug is too much, to the point where it will cause negative side effects or even death? And this is crucial to know. But it's not just a matter of finding out the lethal dosage of a heart cholesterol medication, you need to know that it can actually lower the cholesterol of any living thing. There is no way to know this without giving it first to...a living thing.

But beyond this, I need to emphasize: The goal of a drug trial is to effectively cure people who are already suffering from disease, who are living on limited time.

Drug trials don't just happen on any member of the public, they need to happen specifically on people affected by the disease you're trying to treat. There is at any time a very limited and very marginalized population of the world affected by early onset, familial Parkinson's disease. Because you cannot ethically induce disease in a human being, you are working with, speaking with, and helping patients and their families who are hopeful and desperate for a cure.

If you were to jump straight to human trials from petri dishes, not knowing absolutely anything about how the drug functions in a living, breathing animal body, it would look like this:

We didn't know that minute quantities of the drug interact lethally with x, y, z medication that people are commonly also taking. X number of patients have died as a result.

We didn't know that the drug is fatal to people with [common variant] in their genetics. X more patients have died.

We didn't know the drug exacerbates x, y, z chronic illnesses. X number of people have acquired permanent, lifelong disabilities.

We didn't know the best way to deliver the drug, so we tried multiple ways: the people who received it intravenously are now suffering from a painful, costly, and debilitating condition that did not happen with the ingested form.

I could go on, and on, and on.

The vast majority of these problems can be nearly or almost entirely averted by testing other animals first.

These are all people who possibly could have waited for the normal progression from animal testing to human testing and thus received better outcomes. Some people will pass away in the time it takes to get to that point, and that's heartbreaking, and we all wish science could be faster.

animal research is not the mad scientist wild west that PETA wants you to think it is. there are extremely strict federal laws in place to protect the well being of these animals. animal welfare organizations like AAALAC ensure that lab animals are treated with dignity & respect and are given enough specialized care & enrichment to be happy and content in captivity, just like AZA accreditation with zoos.

not a single animal from a zebrafish to a mouse to a dog to a macaque goes unaccounted for. if an animal gets moved to a new cage, paired for breeding, has a procedure performed on it, gives birth, gets sick or injured, dies, etc. it is legally required that this information is recorded and kept on file for the US federal government to access. failing to record & retain this information is very much punishable by US federal law.

let me tell you - if you abuse or kill an animal, even a mouse - you are almost certainly getting both fired & blacklisted from the industry. if you abuse or kill a more ‘advanced’ animal, such as a dog or monkey, you will likely face criminal charges. killing a monkey is as serious and disastrous as a nuclear meltdown. you are expected to reasonably explain every illness, injury, or death of an animal under your care. you must record all of this information. animals that are clearly suffering with low QOL are required to be euthanized according to AVMA guidelines.

research animals are highly expensive. yes, even the "lesser" animals like mice. the cheapest mice will run you a few hundred $ per individual, with some of the most expensive mice i've cared for being $25,000 per individual. in research we have the "three Rs" - reduction (reduce amount of necessary animals to a minimum), refinement (refine processes to ensure research is accurate and animals feel no pain or distress), and replacement (replace animals with non-living research models as they become available). i can assure you no proper research team is wasting animals (*do not* say "b-b-but elon musk--" his research team is actively being investigated for animal abuse by the government).

research methods that do not require live animals are currently being looked into & efforts spearheaded by - you guessed it - the animal research industry itself (notice how the animal rights people are strangely silent & unhelpful when it comes to this?) but current technology is rudimentary and does not compare to live animal models.

some research animal fun facts (US edition):

all species of animals are only allowed to have one single major surgery performed on them in their entire lifetime.

institutions with nonhuman primates must have a behavior program in place (run by knowledgeable primate specialists) to ensure that they are happy and receiving enough daily enrichment and social interaction.

institutions with dogs are required to have physical exercise programs in place. this means every individual dog gets a substantial amount of leashed AND free-roaming exercise daily, including playgroups with other dogs.

a majority of nonhuman primates get to retire to sanctuaries like peaceable primate sanctuary, and almost all dogs get retired and adopted out by organizations like homes for animal heroes. some institutions will also adopt out unneeded young rabbits, guinea pigs, rats, etc.

some strains of mice glow neon green (or orange or blue) under UV light. this is not harmful to them and is commonly seen in cancer research.