#*this is kind of centered on chronic pain because that’s what i have and i don’t want to say anything bad or uneducated!

[gargalezthesia]

you know what !

shoutout to the physically disabled lees. the lees that “have less spots” because of paralysis or it hurts/is uncomfortable there. the lees that tap out quicker because of exhaustion. the lees that cant get tickled roughly because it hurts them. the ones that can’t get pinned because it’s too rough and leads to pain later or immediately.

i luv u, me too <3

[drdemonprince]

I don't think I have it in me to be an abolitionist because I read that horrible story about the trans teen murdered in South Carolina and my knee jerk reaction is, those people should rot in jail, ideally forever, or worse. No matter how I look at it I can't make myself okay with the idea that you should be allowed to steal someone's life in such a horrible way and then just go back to enjoying your life. Some stuff is just too over the top evil.

You can have whatever emotions you want about that person's murderous actions, but the reality is that the carceral justice system is one of the largest sources of physical, emotional, and sexual torment for transgender people on this planet.

Transgender people are ten times more likely to be assaulted by a fellow inmate and five times more likely to be assaulted by a corrections officer, according to a National Center for Transgender Equality Report.

Within the prison system, transgender people are frequently denied gender-affirming medical care, and housed in populations that do not match their identity, which increases their odds of being beaten and sexually assaulted.

The alternative to being incorrectly housed with the wrong gendered population is that transgender people are also frequently held in solitary confinement instead, often for far longer periods on average than their non-transgender peers, contributing to them experiencing suicide ideation, self harm, acute physiological distress, a shrunk hippocampus, muscculoskeletal pain, chronic condition flare-ups, heart disease, reduced muscle tone, and numerous other proven effects of solitary confinement.

The prison system is also one of the largest sites of completely unmitigated COVID spread, among other illnesses, with over 640,000 cases being directly linked to prison exposure, according to the COVID prison project.

We know that number is rampantly under-estimated because prisoners, especially trans ones, are frequently denied medical care. And even basic, essential physical care. Just last year a 27-year-old Black man named Lason Butler was found dead in his cell, having perished of dehydration. He had been kept in a cell without running water for two weeks, where he rapidly lost 40 pounds before perishing. His body was covered in rat bites.

This kind of treatment is unacceptable for anyone, no matter who they are and what they have done, and I shouldn't have to explicitly connect the dots for you, but I will. One in six transgender people has been to prison, according to Lambda Legal. One in every TWO Black transgender people has been to prison. One in five Black men go to prison in America.

THIS is the fate you are consigning all these people to when you say that prisons must exist because there are really really bad people out in the world. We should all know by not that this is not how the carceral justice system works. Hate crime laws are under-utilized, according to Pro Publica, and result in few convictions. The people who commit transphobic acts of violence tend to be given softer sentences than the prisoners who resemble their victims.

We must always remember that the violent tools of the prison system will be used not against the people that we personally consider to be the most "deserving" of punishment, but rather against whomever the state considers to be its enemy or to be a disposable person.

You are not in control of the prison system and you cannot ensure it will be benevolent. You are not the police, the judge, the jury, or the corrections officers. By and large, the people who are in these roles are racist, transphobic, ableist, and victim-blaming, and they will use the power and violence of the system to terrorize people in poverty, Black people, trans people, "mad" people, intellectually disabled people, women, and everyone else that you might wish to protect from harm with a system of "punishment." Nevermind that incaraceration doesn't prevent future harm anyway.

You can't argue for incarceration as the tool of your revenge fantasies, you have to argue for it as the tool that it actually is. The purpose of a system is what it does. And the prison system's purpose has never been to protect or avenge vulnerable trans people. It has always been to beat them, sexually assault them, forcibly detransition them, render them unemployable, disconnect them from all community, neglect them, and unperson them.

[the-moon-loves-the-sea]

As someone about to be 24 in a few months, does it really get better the older you get? Genuinely confused and wondering because I feel like everyday I'm dragging my feet to just catch up to my peers -Sun

I promise, it really does. Our twenties are rough. That’s our very first decade on our own! You’re just getting started. And your peers who seem like they’re miles ahead of you aren’t really on the same path as you — not any more, not like when we were all in school and we had the same things to learn and the same few years to learn them in, and someone else would tell us when we were through. Now it’s all up to you what comes next.

So all of the ones who have lovers now, or their own place, or a bank account or a couple of dogs or a sense of personal style — none of them are on the same paths either. One of them will raise three kids and then years later start again with two more and do everything differently, and the first kids won’t know how to forgive them for it. And the one going on to their second degree will realize ten years later that they really hate the field they studied for. And they’ll decide to drink less or work less and have to live with the quiet when they slow down, and they’ll move in with their lovers and learn they don’t know anything yet about what they want in love or how to get it. Everyone starts over, over and over again. It’s not a race, it’s a rhythm.

But maybe you really are spinning your wheels and you don’t know how to get traction. How’s your depression? I needed meds, not the anti-anxiety meds they recommended me but proper adhd meds that took years to get. I needed my own space too. I needed new ideas. How kind are the people around you? Do they think good things about you? Are they constantly in crises? Does hearing them stop you from hearing yourself? I had to leave my hometown. I had to unlearn a lot. If you can’t leave, can you find one new person? One quiet place to think? One new author, one new song that’s angrier or lovelier that you can dance to at night or sing to yourself through a long day?

Did things get bad when you were still a kid? You might need extra time with the part of your mind that got stuck young and scared. Somatic therapy is really good. Music helps, and green space, and time working with someone who needs your company — kids or animals or older patients. Most schools and hospice programs need helpers. Making things for yourself helps too — trying until you learn what you like to write or eat or plant, not because it’s mature but because it’s yours.

And maybe you’re actually quite good at some things that you haven’t noticed because they feel easy to learn. How’s your photography, your writing, your memorization, your patience with small kids or spreadsheets or cleaning the little corners of a place? Maybe you don’t know; maybe it’ll take time to find out. If you’ve been diagnosed with anything like neurodivergence or chronic pain, the nearest town to you might have a vocational rehab center that’ll work with you to find your strengths and work you can do.

Anyway, I’m proud of you. You’re looking for hope. There is as much that’s good in the world as all the bad, and some of it is near you. I hope you know you belong here and we need you.

[pokemonshelterstories]

Recently a houndoom has been wandering around my farm, which in itself is odd because there are no wild houndour or houndooms around here. It's covered in what looks like old scars and it even has a broken off horn, so between that and how skittish it is I think it might have been abused. I leave food at it at night, and the camera I set up tells me that it does up come up sometimes to eat it, which I think is good because it's so skinny and clearly not eating enough, and I want to try and befriend it so I can take it to a pokemon center because looking at it breaks my heart. Do you have any advice on what to do about this?

call the rangers to handle it. you shouldn't be leaving food out for a wild houndoom regardless of how skinny it looks. this is a pokemon that is intensely territorial and has the ability to burn down your house, and they often shoot off fire to claim territory or scare off other pokemon. all it takes is one other pokemon showing up to eat the food you're leaving, and this could end very badly. rangers know how to safely remove and rehabilitate pokemon that are struggling. it's impossible to know a pokemon's backstory from just looking at it, but it's more likely that this guy was just released in an area it has no idea how to survive in. houndoom are pack pokemon and tend to be skittish when left alone.

pokemon that are sick, hungry, or stressed often become reactive as a survival mechanism, so the best thing to do here is to let the professionals take care of it. they'll happily give you updates on how it's doing if you give them a call later, too. as someone who has a chronic pain issue because of a houndour bite, you don't want to risk the kind of injury that can be inflicted by a houndoom.

[cripplecharacters]

Hiya, I'm hoping you can help me understand if an idea I have is problematic. I'm writing a fantasy novel at the moment where the main character (who is overcome by guilt for something she did by accident), undergoes a ritual to make herself look as awful as she thinks she is. I'm not 100% sure on the details of what this looks like yet, but at the moment I'm considering something like having the bones of small animals embedded under her skin. Running out of text so will continue in another ask.

Continued from first ask. The idea is that she wants people to be disgusted when they see her, because she can't tell anyone about the accident she caused, but still wants to feel punished. I'm partly inspired by my own experiences of self harm, of wanting to see a visual representation of pain. I'm wondering if this kind of disfigurement is problematic, especially considering it's not reflecting a real condition and that its not a villain. Any insight would be greatly appreciated!

Hi dearest asker!

It doesn't mimic anything of a disability nor is it a fantasy disability in your setting so I think it's good! It is more Body Horror than anything but what I would do is while you're figuring the aspect of the character, is research extensively and make sure it doesn't align with any real conditions. This does kinda balance on the edge of Disability As Punishment because of just the concept, but using your own experiences is what matters here!

Also here is a good post about body horror and disability that makes some good points and has good ideas too!

I actually want to reiterate from the post on how they cite stuff like Junjo Ito and Kafka on a way of expression though Body Horror which (to my understanding, if not feel free to correct me) is like you're doing. Others I would recommend is Frida Kahlo, where she does this in some of her paintings (Here & Here) and in many others.

Other movies like Swan Lake (2010) and Annihilation (2018), also take this concept and do really well with it in my opinion. (Both centered around self-harm and other things) Pain Exhibit is a non-profit online library where people who are disabled or have chronic pain all share their artwork depicting it and is another great example.

This article What Is Body Horror? makes so many good points and it cites a lot of good books, novels, and short stories. It goes into the different aspects of it and really breaks it down into sections. (I want to warn before anyone clicks on that link that it talks about extensive body horror in details). A lot of people's perception of Body Horror has long been associated with people with disabilities. So I think more stories written on actual depictions of what is and people's personal experiences it is so good!

Happy writing! (and I hope the story goes well it sounds really good!)

~ Mod Virus 🌸

[i-still-mask-because]

ok so i read a lot of things from other Covid conscious people about masking as community care and why it’s important to steer the conversation away from individualism, and I really do believe in that, and I worry so much about the people I see who don’t wear masks or take covid precautions

BUT i’m also absolutely petrified of developing any other health conditions because I already have several (not immune related & they don’t make me super high risk for covid) chronic pain/disabilities and i can barely deal with them as it is. & i feel like because i mask around literally everyone including housemates, there’s such a low risk of me passing anything on to other people that i don’t really need to worry about it? which only kind of makes sense so i try to check that thought when it comes up

I’m worried that my Covid precautions are just coming from a place of individualism anyways and maybe if I really cared about community care as much as i should, I wouldn’t be so focused on my own personal health?

and sometimes i feel like i’m “better” than my friends who won’t mask Anywhere (except in a car with me bc i asked them to) but if it’s all just coming from self-preservation, i worry i’m just as bad. (& obviously this is nuanced too, like i’m trying to talk to them abt this and understand their points of view in a way that makes space for them to join me in being covid-conscious but it’s arguably not accomplishing shit. too early to tell)

sorry this is very longg but basically i’m just wondering if you have any advice or thoughts on that, & how to be less individualist in my covid safety? thank u for everything you do on this blog, it means so much to me <3

Hey there 👋🏾

I don't think it's individualist if the main reason you mask is for self-preservation. There's a lot of people that are masking because they need to for their own self-preservation. And that doesn't make the choice to mask a self-centered, every-man-for-himself decision. It's just self-preservation, which is necessary. I'd rather hang out with someone that's masking because they know they cannot risk another covid infection over someone that dropped masking because, "It is what it is man, I just wanna live my life!". I think the fact that you want to survive is important, and you should give yourself credit for that. And from the outside looking in, you going out in public with a mask is community care in and of itself because there's without a doubt someone that needed the protection you're giving them.

In regards to you feeling like you're better than your friends; I honestly get it. I don't necessarily think I'm more superior than anyone for masking, but I get the feeling of feeling proud of myself for still staying strong in keeping up masking despite all the odds and alienation. And I get feeling good about being well-informed and prepared. You mentioned that you've been trying to get them on the same page as you, but it's been feeling like pulling teeth; I absolutely get how you're feeling. If you feel like this is impacting the way you perceive your friends, I think taking time to sit with and process the kind of dynamic you want with your friends could be helpful, and working from there. I wish I could suggest some covid-cautious counselors who may also understand for you to talk to, but I'm really not sure of anyone right now 😭 (if someone happens to know, please feel free to share!)

Anyone else is free to share their thoughts and suggestions, of course!

[lady-harrowhark]

If anyone remembers/still cares about my bizarro jaw bone spur debacle from this summer, I have an update for you! I'm fine now, this is all past tense, but probably don't read this if you don't want to hear about dental/bone stuff.

So to recap, earlier this summer I felt some irritation in my mouth and when I checked it out in the mirror, there was a tiny little off-white shard of something sticking out of my gums on the inside of my lower molars. I figured it was a little piece of food that poked me, but when I touched it, it 1) was hard and sharp, 2) would not move, and 3) hurt so bad that it about knocked the wind out of me. Even in the moment I knew this sounded dramatic and highly improbable, but I was immediately Very Sure that it was a little shard of bone.

By the next morning it was so swollen that I couldn't see if it was still there, and after four or five days I ended up calling around and found a dentist who could get me in to take a look because my usual dentist at the student health center didn't have any immediate openings. By that point I was taking Tylenol + ibuprofen around the clock as well as using Orajel numbing gel and icing it, but nothing was touching the pain. Also, the side of my face and down into my neck was starting to swell, and sleeping and eating was extremely difficult due to the pain.

The dentist I ended up seeing was very friendly and pleasant but ultimately pretty dismissive. Nothing showed up on an X-ray but he could see a spot of "hyper-irritation" where I'd had the little shard, and he said it was possible that a "bone spur" worked its way out through my gums. Usually that only happens after oral surgery or an injury, but I'd also had a dental cleaning a few weeks prior that was weirdly aggressive and left that part of my gums bleeding and sore for several days, so it was possible that was enough to dislodge something left over from when I had my wisdom teeth removed years and years ago. Or maybe it was just a little cut. He then told me to alternate the Tylenol and ibuprofen instead of taking them simultaneously and to call back in two weeks if it wasn't better or if it started getting hard to eat or sleep. I reiterated that it already was hard to eat and sleep, and asked if I was understanding him correctly that he wanted me to take LESS pain medication. He paused, and then said to call back in one week if it wasn't better.

So obviously I went out to my car and cried. I have a very skewed pain tolerance from a lifetime of chronic illness experiences and I'm a very smiley and friendly person in general, so I do acknowledge that I don't usually LOOK like I'm in pain, especially to someone who's only just met me. But for me, the fact that I even made an appointment for it is a giveaway that this is like, off the charts levels of pain. I called my dad since he's a doctor and he was able to prescribe some antibiotics for me just in case, and walked me through how to adjust the ibuprofen dose to be the equivalent of prescription strength. I'd decided that if it wasn't any better by the next day, I was going to urgent care. Thankfully it was a smidge better, and over the next maybe two or three weeks it mostly went away, although for while I could still feel sort of a divot on my gum where the bone spur had been.

ANYWAY yesterday I had my regular dentist's visit, the first time I'd been in since then. I told the hygienist about it, and she seemed kind of alarmed, especially because she could also still feel the little spot on my gum. The dentist ALSO seemed pretty shocked and could feel where it was as well.

So here's the update: I apparently have a little bit of extra bone built up around my back lower molars, which is unusual but not unheard of, and mine is very very mild in comparison to what you see when you Google "mandibular tori" - mine is really just that it's slightly rounded or mildly bowed right below my molars rather than going straight down to the bottom of my mouth as is typical, minor enough that no dentists have ever mentioned it to me. I never even realized that wasn't what everyone's were like until this spring when a massage therapist I saw for TMJ stuff mentioned that she noticed it. So in general that's not any sort of issue for me, EXCEPT that the dentist yesterday said that the gum tissue can be pretty thin where it has to stretch over the extra bone, which can also be kind of pointy or sharp.

Given that plus the fact that I hadn't had any sort of recent injury or surgery in the area like you would expect for a bone spur, she said it was more likely that I somehow scraped or cut the gum right down to the bone.

It wasn't a bone spur. That was my literal, actual jaw bone showing through my gums.

[wheelie-sick]

a conversation I had dug some shit up. growing up with a severe chronic illness is extremely fucking hard and sometimes I feel like the only one here who had serious problems as a kid.

I do not remember a time before I was sick. I do, unfortunately, remember exactly how sick kids are treated in hospitals. it is not with kindness or compassion or care it is by being held down while you scream and sob from fear and pain while medical procedures are done on you against your will because you are 5 and have no rights and therefore everyone disregards your opinions on treatment. and all this is happening while your parents, who are supposed to protect you, watch. in fact, holding you down was their suggestion. no one bothers trying to get you to consent to treatment by actually telling you what the fuck is happening they just assume that because you need it there is no reason to ask or explain. it is being touched and looked at without permission, it is having your privacy violated time and time again, it is going through experiences that would traumatize adults without any coping mechanisms because you are a kindergartner and are still just trying to learn to be a person. I had no support, no knowledge, and no say. it was awful.

I was not treated in a children's hospital, I was treated in the medical center in my small town. I was expected to behave like an adult about treatment while I was still learning my ABCs. there were no child life specialists, no pediatricians, no one who knew a single fucking thing about how to treat a child like a person. I was treated like a medical doll.

[wellplacedbanana]

I’ve seen a few posts recently talking about how important it is for us to share our tips for dealing chronic illness with each other, and I’ve realized that as a freakishly avid community enthusiast, I’ve been falling down on the job. So, I present

Wellplacedbanana’s Ridiculously Long List of Tips for All Things Chronic Illness (Curated Over 8+ Years):

Infusion Centers

Headed to an infusion center to get that sweet sweet (expensive as hell) live-saving medication pumped directly into your veins? Here’s what I do.

Bring headphones or earplugs. Most infusion centers try to maintain a semblance of quiet for the patients, but it can get loud fast—beeping IVs, pulse ox monitors, loud families, codes. Some infusion centers do pods of multiple people and some do individual bays, so this can affect noise levels.

Drink lots of water before if you have to get an IV placed. Don’t worry too much about bringing a water bottle because they’ll give you one when you get there. (Of course, if you have something like POTS and need more intense hydration, bring the damn water bottle.) If you’re not hydrated and they can’t find a vein, they’ll call in the ultrasound tech, and they’ll bring the longest IV needle you’ve ever seen. It hurts. Drink water.

Bring a book or your Switch or something else to entertain you, but don’t expect to actually do it. I tried bringing papers to edit the first time because I was like “Oh it’s an hour and a half of uninterrupted free time. I can get so much done!” I was wrong. The nurses are constantly checking in for vitals, the unit can be loud, and I spent the whole time trying not to vomit everywhere. Different infusions will have different side affects. Knowing what yours might be will help you plan for what you want to bring. Knowing how long your infusion will be can also help. Most infusion centers have to keep you 20-45 minutes after your first dose of a new medication to make sure you don’t have an allergic reaction, so factor that into your time too.

If you’re in a pod with other patients who’re friendly and if you feel up to it, don’t be afraid to talk with them. Lots of them are lonely, bored, interested in other people, etc. I met an elderly Thai lady one time who had been there for three hours and would be there for another four AFTER I left. We talked about her husband and her kids, and she listened to me talk about punctuation as style in prose. It made me feel less alone in the medical system and helped distract me from the nausea.

Conversely, if you don’t want to interact with anyone, snap on those headphones and block everything out. The nurses will get your attention if they need you. Don’t worry about staying lucid. Your job is to get the infusion and do what’s best for you.

You can bring snacks if you want, but most units/centers will have something to munch on or can order you something from the cafeteria if you’re at a hospital. Also the medication and the smells in the unit always make me nauseous, so it’s kind of a waste for me to bother pulling together food before I leave. You can always eat before or plan to get something on the way back. Going through a drive thru to get something with protein is my go to.

If possible, schedule your next appointment while you’re there. I have to go every three months, so I schedule the next one while I’m there, and then I never have to make any fucking phone calls. Phone calls are the worst.

My last and most important tip: ask the nurses when you need something. Blankets, water, snacks, pain meds, the lights turned off. If they can’t do it, they’ll tell you. They’d rather have you ask and have to say no, then you be uncomfortable. Don’t suffer if there might be a solution.

Dealing with Shitty Doctors

There are shitty doctors everywhere, in every specialty and every hospital system. It sucks, and you can do your best to avoid them, but most chronically ill patients will have to put up with one at some point. Here are my suggestions:

If they’re refusing to acknowledge one of your symptoms is a problem (won’t order tests, won’t refer you out, won’t ask any questions), tell them it’s affect your Activities of Daily Living. ADLs are one of the ways doctors measure severity of symptoms and quality of life. ADLs are the absolutely essential things you need to do to be a functioning human: eat, shower, get dressed, brush your teeth. ADLs are a trigger word for most doctors. Physical therapists and occupational therapists were created specifically to help patients achieve their ADLs. If you’re having severe joint paint, say it’s affecting you’re ability to shower and dress in the morning. If you have intense fatigue, say you’re too tired all the time to cook food to eat or even brush your teeth before bed. Tell them your symptoms are affecting your quality of life and your ability to function daily. This won’t always work, but it’s a good starting place. (A side note: if you have have to submit an insurance appeal for something that was denied, citing ADLs as a reason to receive the treatment/medical equipment/doctors visit, will often spur them into action. Sometimes, it’ll just make them ask more questions, but questions are better than flat out denial. This was a very helpful tactic when I was trying to get my manual wheelchair approved. I told them I was unable to complete my ADLs and it was affecting my quality of life, and they eventually came around. It’s also important to remember that ADLs are only the most base tasks that you need to live. Driving, working, socializing—those aren’t included in ADLs, and insurance especially will laugh in your face if you try to say you need medical equipment for something like that.)

Lots of doctors, consciously or unconsciously, will judge how you’re actually feeling by your mood in an appointment. I had a pediatric neurologist who couldn’t be convinced that my pain was at an 8 because I would laugh with my mom in the waiting room. Eight months in, I started getting real quiet, not talking, crying when he talked, all that shit, and he was so fucking flummoxed. He was like “what changed?? Are you depressed??” And I had to remind him that I was thirteen with a severe shoulder inure that hurt every time I breathed. Doctors will judge you based on how you look and how you present. It’s horrible, but it’s true. Present to them in the way that represents what they’d expect to see for your symptoms.

Whatever you do, don’t say anything (or send any snappy messages) that might be considered aggressive until you are absolutely, 100% positive you will never ever have to see them again. I’ve had a few doctors that said ridiculously horrible things to me. It’s tempting to send them a message about how shitty they’ve been or how much they’ve hurt you, but it won’t help. Shitty doctors have fragile egos and they don’t like to be challenged. They won’t take this well, and they’ll mark you as attention seeking, emotional, mentally unstable—you name it. When your other doctors call to ask questions about symptoms, etc, they’ll start talking shit, and everything gets complicated. This might sound dramatic to anyone who hasn’t seen it happen, but honestly, the medical system abuses emotion and mental illness to discard patients that aren’t afraid to advocate for themselves, and this is one of the least immoral ways they do it.

Remember that you don’t owe your doctors anything (except basic human decency). If they ask you to do something and you can’t or don’t want to, don’t. My psychiatrist was really fixated on me getting a light box to cure my depression. I did Not want to do that, so I didn’t. Sometimes, your doctors won’t move on to further treatment or tests until you try it, but most of the time you can say, “that’s not something I’m able to do right now. Let’s explore further options,” and they’ll move on.

Remember that learning to advocate for yourself takes years of practice. Just do your best, and try not to blame yourself for the ways you get mistreated. Therapy is the best investment I’ve ever made for this. It’s helped me learn how to advocate and how to process medical trauma.

Medication

For gods sake, take the as needed medication when you have a migraine or if you’re nauseous. Don’t punish yourself.

This might seem like a no brainer, but if you’re traveling and you’re going to take your medication bottles with you, put them in a ziplock bag. They will definitely open in your suitcase, and you’ll have to pick Levothyroxine out of your socks.

If a medication gives you icky side effects, tell your doctor and ask if there’s something that doesn’t do that. For me personally, it’s hard to find medication that works at all, so I often get stuck with things that make me feel like shit. But it doesn’t hurt to ask. Sometimes new medications come out or they dig up old ones.

Some medications come in dissolvable tablets or suppositories. They’re not fun, but if you have trouble swallowing pills, this is a good way to go. Again, communicate with your doctor about these things. I know that there are Scopolamine patches for nausea too. I’ve never used them before, but it might be worth looking into if need easy nausea relief.

All Things Wheelchair

Man, wheelchairs suck, but they’re also amazing. If you find yourself using one, you’ll encounter a steep learning curve.

If you’re not super buff when you first start, it’ll seem impossible to go up even a slight incline. Your arms will get stronger the more you move around, but it might take time. I eventually bit the bullet and started doing personal training. I’m lucky that I can afford it, and I know it’s not an option for everyone, but if you can, find a trainer who won’t saying anything shitty and who’s willing to accommodate. I worked with a queer-owned gym to find someone I was comfortable with. We do upper body strength training, and it gives me a chance to move my body more often. I still can’t go up big hills, but I feel infinitely more mobile. Give yourself time to adjust to the new strain on your body, even if you don’t do training for it. You’ll be sore in the beginning. Ice and heat will be your friends after long days. If your wrists start hurting a lot, you’re not wheeling correctly, and you should ask your doctor for a referral to PT or OT. Oh and your hands will be fucked for the first few weeks. I bought special wheelchair gloves to try to combat this, but it just made it harder for me to maneuver. Now I only use the gloves if it’s cold, if I’m going down hills, or in the rain/snow. (But seriously, if you’re going down steep hills, use traction gloves.)

Learn to pop a wheelie as soon as possible. It’s such a helpful skill. If you get good enough, you’ll be able to get up over single steps and traverse shitty pavement.

If your wheelchair has a cushion, then it has a cushion cover. Wash it.

Time for the grossest part: cutting hair out of your caster wheels. I hate this. I hate it so much. It’s fucking disgusting, but you have to do it. It’ll fuck up your wheels and make it harder to maneuver. Also it’s just gross to have all that nasty hair hanging out by your feet. Get yourself a long pair of thin scissors and cut all that hair out every week or every two weeks. If you don’t have long hair or live with people who have long hair, then you might be able to wait longer. You should also sanitize your hand rims while you’re at it. Hand sanitizer or Clorox wipes are great for this.

You’ll notice that it’s fucking impossible to carry shopping baskets or suitcases if you use a manual chair. Some people try to balance them on their laps or wedge them onto their footplates, but it’s pretty precarious. I got these weird peg things that attach to the frame. You can place a basket or your bag on it and still keep your hands free. Here’s the link for the ones I got, but it depends on your make and model, so do some research and call some different companies before buying anything. Also, make sure to measure the distance between the two sides of your frame to make sure a basket will be able to balance on the two pegs. Your frame might be too wide for this. Mine is, but I bought a special basket to take to the store that’s wide enough to reach across.

Lots of people will offer to push you. Some won’t even offer; they’ll just grab on and take you in whatever direction. It’s insanely invasive and dehumanizing. Don’t be afraid to put on your breaks if someone does this. I can stand and take small steps, so sometime I just get up and stare at them. You can also buy covers for your handles that have spikes so people can’t grab them. I know some wheelchair users who like it when people offer to push them. That’s good too! Take the help if you want it. Just remember to prioritize your safety and comfort. I had a big debate with another disabled person about whether it was infantilizing for someone to offer to hold open the door for us. I’m firmly on the side that they can offer, and I can say no, and they can listen, and then we can both appreciate the moment of shared humanity between us. They did not agree. Disabled people fight and disagree all the time because we’re not all carbon copies of each other. That’s okay! Just be respectful.

Getting a customized manual wheelchair was one of the single most stressful things I had to deal with. Insurance doesn’t like to pay for them because it’s about 3-12k, depending on the specifications and add-ons. But it’s also been the most liberating thing I’ve done since getting my mobility stripped from me. I’m not sure how it works for everyone, but I got a referral from my doctor to a custom wheelchair company. From there, they took measurements, discussed needs, and showed me different models. It’s going to be really really difficult to know what you want the first time. There’s a lot of different brands and customizations, so do your research and talk in depth with whoever’s making your chair. Ultra lite rigid frames are my favorite because they’re usually only 15-40 pounds, and the wheels can come off to make it even lighter. However, rigid frames don’t fold together in the middle like classic manual wheelchairs that you might find at a hospital or get at a rental company. They can be difficult to fit in the backseat of a car or in some trunks, so make sure to measure any cars you ride in regularly. Some people prefer to have tilted wheels so they can turn easier. Some people don’t want anything to do with that. Depending on your mobility and the people in your life, you might choose not to add push handles to your chair. I added some to mine because I often get dizzy, and it’s helpful to have handles in case I need someone to push me out of the crosswalk or into the shade. People who are highly independent and extremely strong might not want push handles because they won’t need help up steep hills. I like my handles a lot; however, my chair back is shorter than a standard wheelchair because it helps increase range of motion when I’m wheeling, so my push handles are lower than normal, and anyone who wants to push me has to hunch a bit to reach. Again, do your research and talk to your rep before making final decisions. Some companies will let you test out the chairs they have on hand to see what you like. It’s important to work with a wheelchair company you really like because you’re literally putting you life in their hands. I’ve had better luck with smaller, locally-owned companies, but you can’t always get referrals there, and not every town has them. Here’s my tip to you: Numotion sucks ass. Avoid them. My branch of Numotion seems to be an outlier; I’ve had really good experiences with them. But most of the time, its impossible to get ahold of anyone, their hours are few and random, and their customer service reps are rude. But! After you’ve completed your order form—gotten measurements and found customizations—they’ll submit it to insurance. This is the tricky part. I went through four appeals, before I got mine approved. Luckily, I had insurance through my mom’s job, and after the last appeal, her company told the insurance that they had to pay for it. This won’t be the case with everyone. Be diligent with your appeals. Have your doctors write specific, clear letters about why you need it, including information about all the customizations and add-ons. It’s likely that they’ll only pay for the base chair, and you’ll have to pay out of pocket for any extra things. Another note: most insurance companies will only pay for a new chair once every five years (if they approve the first one at all), so be sure that the chair you pick out will work for you for at least the next five and a half years.

I had an advisor in college tell me something devastating once: there is no AAA for wheelchairs. I’d broken a caster wheel and gotten stuck on a university sidewalk in 102 degree heat, and she was telling me about her own experiences getting stranded after one of her tires popped. She’s right; if you’re wheelchair breaks, you’re stuck wherever you are without any backup. Carry your phone with you. Tell your friends or family where you’re going before you leave. Familiarize yourself with the wheelchair repairs shops in your area. Sometimes places like bike shops will be able to help you fix smaller things. I always carry an Allen wrench with me in case I need to take a part off. And don’t worry; you’ll find that if something does go wrong, people are far more willing to help than you’d expect. One of the sculpture professors in the art department found me that day and went back to his workshop to get all his tools. He brought me water and sat in the sun while he tried to fix my wheel, and when he couldn’t, he offered to drive me wherever I needed to go. This man was a tenured professor with a prestigious MFA, and he was running late for a party where he was supposed to be handing out awards. You’ll find lots of good people when things inevitably go to shit.

Going along with the last point, your wheelchair will break, and you will have to send it into the shop to get repairs. If you can, invest in a cheap manual chair that you can use in emergencies. If you live with other people, you can buy a transport chair for cheaper, but you’ll need someone around to push you because it won’t have hand rims.

If you’re new to wheelchair use, give yourself space to feel all the emotions. When I first started, I had been using an office chair(!) to get around. My mom would push me from my bed to the bathroom and then back to bed while we waited to get a rental. I was so relieved when I got my own chair that I pushed everything else down. It took months to allow myself to be sad about all the things I couldn’t do anymore and be angry about all the inaccessible infrastructure that America has. Don’t push it down. Talk to a therapist or find people in the community to discuss it with. (If I choose to talk about my frustrations with friends, I always start with “I need to vent right now, and I’m grateful you’re willing to listen to me, but I’m not looking for any solutions to this at the moment,” or “can you give me some suggestions to work around these things that are frustrating me?” This gives my friends insight into what I need, instead of making them guess. It keeps us both from getting frustrated, and I highly suggest it, especially if you or your friends have trouble navigating social situations/expectations.)

Hand Controls

Hand controls are great option for your car if you’re unable to use your feet to drive. I got mine about a year back, but it was tricky and really confusing at first.

First thing you need to know: you can’t get hand controls without a prescription from a specialist. Usually a certain type of occupational therapist. You can look up driving rehab OTs in your area, but there aren’t many of them, and lots of the time you’ll have to drive several hours to see one. There’s usually a long wait list as well. (And of course, a lot of them don’t take insurance.)

If you’re able to find someone who’s certified, they’ll do an intake appointment and assess your physical abilities and needs. Sometimes, they’ll do the assessment and decide you aren’t fit to use hand controls. This can be for a multitude of reasons, including impaired mental cognition and slow reaction time, issues with hand or arm mobility, or there might be a better way to adapt a car for you. Again, it varies greatly on the person, and I’m not an OT, so I don’t know all the ins and outs. If you pass the assessment, and they view you got to drive with hand controls, you’ll be required to do a certain amount of training where you practice using different equipment. Some OTs will know what you need to use right away, and others will have you try different things out to see what fits best. There’s a lot of types of hand controls and a lot of adaptations that can be done to a car, so it really depends on the person. My training was only about 15 hours (plus independent driving practice), but it’ll depend on whether this is your first time ever driving, if you’ve driven without hand controls before, and if you have any other medical issues that might make it hard for you to adapt. Once you’ve completed the training and received your certificate from the OT, they’ll write a prescription to send to a shop that does specialty car adaptation. Kind of like wheelchairs, the shop you go to is very important. Ask your OT if they have any favorites in the area. Insurance never covers this, and some shops will way overcharge you if you’re not careful. My hand controls were about 3k out of pocket, but it was definitely worth it. It would’ve been a lot more to add other adaptations like a lift or a ramp, but sometimes you can buy used accessible vans for cheaper than adding it to your own car. Something to know: you’re usually able to turn your hand controls on and off. So if your friend needs to borrow your car, or you need to let a mechanic test drive it, you can disable to hand controls and allow someone else to use the foot pedals as normal.

Overall, it’s a very long, very expensive process, so plan ahead and be prepared to wait and pay.

Navigating Raising a Kid with Chronic Illnesses

I don’t have any kids, but my mom was my sole caretaker growing up, and I can offer you some of her thoughts. You have to remember that no matter what age your kid is, chronic illness is an impossible thing for them to deal with, and yet they have to deal with it anyways. Sometimes, there’s no good way to comfort a child who’s in 10/10 pain, or who’s about to undergo a life-altering procedure. All you can do is your best. Communicate. Offer support. Give affection. Make your love unconditional. I was a very angry teenager. I was angry with my mom that she couldn’t fix it, and I was angry with my doctors for the way they treated me. There were days where I would yell and sob and refuse to take my meds, and there where days where I would stare at the wall and not respond to anything. It drove my mom up the wall. She’s used to fixing things, and this was one of those things she couldn’t even help. I know she stills holds a lot of guilt for this, but she shouldn’t. She did her best. You’re doing your best too. You can’t fix everything. That being said, here are her suggestions:

Therapy, therapy, therapy. They might hate it, but some day, they’ll thank you. Remember that not every therapist is right for every patient. If your kid wants to switch to a different therapist, let them. It’s better than them sitting and not speaking the whole session.

Lots of kids with developing rare undiagnosed diseases will go through this vicious cycle where they get a new symptom, get sent to a specialist, get dismissed, and then develop a new symptom and start the process all over again. It’s not easy. My mom was a fan of throwing Pity Parties. Every once in a while, when the grind of it all started making us feel hopeless, she’d take me to the store and say, “pick out snacks and drinks. We’re going to throw a pity party, gorge on sugar, watch Lord of the Rings, feel bad for ourselves, and tomorrow, we’ll dust ourselves off and try again.” It helped. It was good to know that sometimes you can let life feel unfair, and it was even better to know that the next day it would be easier to try again.

A lot of being chronically ill as a kid is getting decisions stripped from you and having unexpected negative experiences. My mom would try to do spontaneous things every once in a while to remind me that not all surprises are bad. Instead of driving straight home after school one Friday, she took me to Starbucks without saying anything. After an MRI, she stopped at an art fair and let me pick out a necklace. We would go to the library after I spent the day in the hospital. Sometimes, she’d call my aunts while I was at school to come over and play card games on the weekends. And she was really big on giving me choices in everything. She never made me agree to new (non-lifesaving) treatment. Ever. If she really wanted me to do it, we’d talk it over and come to an agreement that made us both happy. Sick kids are forced into adulthood early; they know how to make calculated, logical decisions when needed. Let them be a part of their own healthcare. (They should also be given the chance to make rash, stupid decisions that have no bearing on their health.)

Keep track of everything. Doctors, meds, ER visits, PT exercises, diets they’ve tried for GI issues, everything about the surgeries they’ve undergone. Some day, you’ll need it. Or your kid will grow up into a chronically ill adult, and they’ll need it.

Talk to their school counselor about getting a 504 or IEP. Even if they’re not struggling. I was a super academically minded kid; I didn’t struggle to understand new concepts or complete homework correctly. But eventually it became hard for me to attend class and finish assignments. Having an IEP saved me. 504s are a lot easier to get (a lot less paperwork, less testing, less pushback from admin), but they’re not legally binding. If you want something concrete and all-encompassing, go for the IEP. IEPs are also really helpful when trying to get accommodations in college. You can also start with a 504 and switch to an IEP later. While we’re on the subject of school: remember that education is important, but school is not the end all be all of your child’s life. What should matter the most to you is that they end up safe and happy. I didn’t graduate high school; I took a proficiency test my junior year and dropped out. It was the best choice I could’ve made at the time, but it was still tough for my mom. I ended up going to college, and now I have a pretty solid job, but every kid will be different. Their mental and physical health is the most important. School is a huge huge huge stressor. Don’t make it harder for them than it already is.

Dating

God dating sucks enough on its own, but adding in chronic illness and disability just makes it a shit show. I don’t have a lot to offer on this other than you shouldn’t settle for anyone who doesn’t respect you, treat you with love and compassion, and accept every part of you for what it is. People will say rude shit. They’ll be nasty, fetishizing, infantilizing, dismissive. Some won’t be able to put up with all the things that come along with being ill. I sound like a broken record, but find a good therapist who can help you voice your needs and expectations clearly. Remember that you never have to go on a date if you don’t want to. Participate as you see fit. Throw it all out if you want.

I don’t have enough time to go into my tips for intimacy/sex and disability, but I’ll give you the highlights.

Communicate. Make it very clear what you’re able to do, what you’re interested in doing, and what you don’t want.

There are lots of ways to have sex. If you’re both having fun, being safe, and engaging consensually, then you’re doing it right. Don’t let abled bodied people tell you the way it should be done. There are lots of accessibility friendly toys to invest in, too.

As weird as it might sound, don’t be afraid to take breaks. Keep water near by. If you have POTS, keep salt or electrolyte tablets on hand. If you have to stop to vomit or go to the bathroom, don’t let it shame you. Go at your own pace and take care of your body.

Misc

Having seizures on a college campus: Most universities have a policy that if you lose consciousness while on campus, they have to call an ambulance. You are not required to ride in the ambulance. You can decline, and the paramedics will make you sign a form before leaving. If you’re still actively having seizures, then they’ll take you anyways, but you probably won’t be in any shape to try to decline. If you’re having seizures regularly, tell your professors. It’ll freak them the fuck out, so warn them ahead of time. It makes the whole thing a lot less awkward when you collapse in the aisle during a lecture. Related to that: communicate with your professors about all your accommodations and emergency health needs. They really honestly appreciate it when you talk to them about this stuff. Even if they have a big class and don’t remember you, it’s good to send them an email and introduce yourself. Hopefully, you’ve also talked to your college’s Disability Resource Center. If not, go do that. Now. (There’s a whole lot of shit that I have to say about campus accessibility and disability resource centers, but I’m not gonna go into it right now.) Also, wear your medical alert bracelet. I know they suck, but it sucks more for someone to be digging through your pants pocket while you’re seizing to try to find your wallet. And keep your emergency contact info pinned up somewhere in your dorm. I used to put mine on the fridge and point it out to my roommates at the beginning of term. It can take a while for RAs to pull yours up, so it’s best to make sure it’s easily accessible.

Remember that you do not function like a normal person. There is no wrong way to solve one of your problems. If you need to put a stool in your bathroom to sit at while you brush your teeth, do it. I got an extra tall stool to sit at while I cook at the stove because my wheelchair is too short. (Cooking in a wheelchair is another thing I could talk about forever.) If you need to wear a sleep mask on the bus because the light makes your migraine worse, do it. People can look at you funny all they want. Like I said, I rolled around my house in an office chair while I waited for a rental wheelchair. What I’m trying to say is find things that work and implement them, even if they’re non traditional.

Here’s what I pack in my bag for an ER visit: headphones, phone charger, book, zofran, Naproxen, water bottle, wallet with cash, socks, and sleep mask to block out the waiting room lights. If I’m expecting to be admitted, then I’ll pack more, but I try to keep it light if it’s just triage and a visit with the ER doctor. Sometimes I’ll stuff a granola bar or some almonds in there too.

My biggest tip for surviving hospital stays is to get out of your room (if possible). Go on walks around the unit. Some hospitals have little courtyards patients can sit in. If you’re in peds, go visit the rec room, even if it’s awkward. Their activities are usually meant for the younger kids, but it can be fun to connect with other people your age, and you’ll thank yourself later when you’re stuck in bed at 3am. Also, tell your friends to come visit you. Not everyone will be able to, but most people are happy to come hang out for an hour or two. It’ll help; I promise.

Clean your room every few weeks. Dear god, clean your room. I have trouble with executive functioning and finding energy to do housekeeping type stuff, but I get more depressed when my room is gross. So clean your room. Especially if you have hypersomnia/sleep excessively.

Don’t force yourself to use a pill organizer. I know everyone says it makes it easier, but I get overwhelmed when I have to refill it, and then I just don’t end up taking my meds. If it doesn’t work for you, don’t do it. If it does, then do it!

Don’t buy the self help books your therapist recommends unless you’re actually interested in reading them. It’ll just sit on your shelf and make you feel guilty for not being good enough.

Mental illness is tightly bound to physical illness. Try to be an active listener in your body. Sometimes, when I’ve been feeling really nauseous, my PSTD symptoms will get triggered over nothing, and it’ll frustrate the fuck out of me because it seems like it’s happening over nothing. I try to track when my emotional state is worse to see if it’s correlated to my physical symptoms. This helps curb the frustration and guilt. Sometimes it makes me dissociate more. It’s a balancing act. Just do your best.

Hobbies are so so so important. Make sure to give yourself time to work on them! And there are a million ways to adapt the activities you love if you’re having trouble, so don’t afraid to do some research. I know they have crochet hook grips for people with arthritis or loose grips, and there are super intense magnifying glasses for people who like to cross stitch and are having trouble seeing the tiny ass holes. I have a color blind friend who sends us pictures of paint to see if it’s the shade he wants. Very occasionally, you’ll come to the conclusion that there’s a hobby you can’t adapt. Let yourself be sad. I can’t hike anymore and it sucks. I can’t go tide-pooling either, and its not like if I just work really hard I’ll be able to do it some day. Life is shit, and sometimes you have to let things go. Be angry, be sad, tell people to fuck off if they try to turn you into inspiration porn, but also remember that there are lots of other cool things out there to try.

Going along with the hobby thing: take the time to learn ASL if you’re having trouble with your hearing or if you often go nonverbal. One of my friends had to get hearing aids last year, and we offered to learn with them, but they were hesitant because it feels like a non necessity to them. Something selfish that would take up all our time. If you think it’ll help, you should grant yourself the time to learn. Capitalism makes us think that we shouldn’t engage in activities unless we gain money or power from them, but that mindset will kill you. Your life will be infinitely easier if you learn ASL online with your partner or friends or siblings.

Look up Spoon Theory. It’s not a helpful metaphor for everyone, but most people in the community talk about it, so it’s good to be familiar with it.

Don’t be afraid to go out and find community! Find support groups, look up wheelchair sports if you’re into getting sweaty, brave the awkwardness of starting conversations with other patients in the clinic. I’m wholly and completely of the idea that humans are innately good. There are lots of interesting chronically ill/disabled people who’re looking for connection. Insurance companies and other medical entities rely on us feeling isolated, alone, and uniformed to continue making money and hold power. It’s important that we share with and support each other.

I know a lot of this is basic stuff, but it’s helpful to have reminders, and if you’re new to the whole song and dance, then it’s nice to get a sneak peak. There are a million things I didn’t get to, but this was what was on the top of my brain.

Also, I’m not the collective voice of every chronically ill person in the world. My experiences are not yours and they’re not everyone else’s. What works for me, might not work for you. Be kind.

[akindplace]

yo!

i love your blog & it's been a safe space for me lately 🥰

in your latest reblog you wrote "went through" the pandemic, referring to the ongoing pandemic in the past tense.

as i'm sure you know, COVID is still one of the leading causes of death for many people & is still disabling thousands on a daily basis.

i'm sure it wasn't malicious, but referring to the pandemic in the past tense when so many are still directly affected by it & testing positive to this day is ableist language, because it centers those who have the luxury of health to falsely think of the pandemic - and, as a consequence, vulnerable folks - as a thing of the past.

please consider the language you use when referring to the ongoing pandemic, which many (including myself) are still masking to protect our health to this day 😷

thank you! 🤍

Hey I know youre not coming from a bad place saying this, and I know you’re trying to call me out but it’s kind of bold to assume that i was not one of the people with disabilities that was affected by the pandemic while this is a blog that’s openly about living with disabilities. i have eds, caught covid even while masking, lost people in my life over it, was left seriously sick after, went through every type of doctor, and ended up doing experimental treatment because no one really knew what happened to me and they still don’t know, and i still haven’t recovered (probably never will, tho who knows) in 2024. i am a person with a disability left in terrible conditions after having it. i still mask. i am one of the people you refer to while also calling my language ableist because i used the past tense. I don’t really know what tense to use while talking about it. And it seems a lot of people disagree on it too, so i honestly don’t quite know what to think I should use because it’s honestly confusing. i am extremely aware covid is very very real, and it has changed my life forever ever since i had it.

I do not have the false luxury of that belief that you seem to assume i do. It’s quite hurtful, and I’ve been pretty open about it on this blog, and it’s one of the reasons I even made this blog. I’m literally disabled.

Not only I survived covid in terrible condition with awful levels of chronic back pain + chronic migraines + pots but i also survived a dengue epidemic this year in brazil and I haven’t been doing well ever since getting sick months ago.

unfortunately, hmo has declared covid to no longer be a pandemic. It was still a pretty controversial decision, I don’t know if people are unaware that covid isn’t serious, I certainly am not, and I don’t personally think it is “over” or in “the past” because this is honestly my present and it will be my future.

I know you don’t mean it, but the assumption still feels weird because you’re sending this to a person who has a blog about living with a disability, and it even says so on my description and pinned post.

I don’t know what language to use to describe this anymore, and I know it will be controversial either way. But just please, please, please, don’t assume that I’m not a disabled person who doesn’t mask and didn’t have their lives and health fall into crumbles after having covid and then having dengue which is a very serious epidemic in Brazil right now. My country was one of the most affected by covid, and I saw my life change completely after having it, and I knew people who were left extremely sick and died because of it. On top of that we had another epidemic virus outbreak (dengue). On top of that I already had a chronic illness (EDS). Then on top of that this is a blog about living with a disability and chronic pain.

And it seems specialists don’t know what language to use either, but most of these specialists are aware the disease is still very serious:

When I asked Dr. Mandy Cohen, director of the U.S. Centers for Disease Control and Prevention (CDC), she didn’t give a direct answer. “Rather than getting caught up in the semantics of it,” she says, people should feel confident that “we are outside of the emergency [phase]. But I don’t want folks to forget that COVID is still here and still poses a risk.”

Even Maria Van Kerkhove, director of epidemic and pandemic prevention and preparedness at the WHO, admitted that the issue is a “confusing” one. The WHO continues to describe COVID-19 as a pandemic on its website. Van Kerkhove says that’s reasonable given the virus’ continued global presence, even though we are no longer in the crisis state we were in 2020—but, she says, there’s no definitive, yes-or-no conclusion about whether that’s the right term to use.

(Source)

Just please, please, don’t assume things like this because I used past tense. Whatever tense I use, it feels like there will be people who don’t agree, I get that. I don’t know what language to use, and I don’t want to be stuck on the semantics of it, because I feel quite stuck still to the awful things that have happened to me these past years, the ones that are happening right now. But that does not mean I don’t think covid isn’t serious or deadly or that it leaves people with chronic illnesses even worse or that it didn’t cause mental health issues or economic issues or social issues. because I have lived through the very serious ramifications of having it.

[wyrm-mlm]

Yooooo I just had an idea for a modern Witcher AU that has latched my brain and won’t let go so I gotta just get it out:

Kaer Mohren Animal Hospital

Geralt, Lambert and Eskel all grew up, adopted by Vesemir and somehow all became Veterinarians. Then they decided to open an animal hospital together

Eskel is usually who you see if you bring in a cat or dog, handling the general practice. He’s kind with animals and people alike, sitting with clients as long as it takes to make sure they understand everything.

Lambert takes care of exotics, the weirder the better to him. If Eskel’s schedule is tight he’ll examine a dog or two but he refuses to work with cats. They hate him, he’s sure.

Geralt is usually on the road, tending to livestock. Horses are his favorite of course, and he has some of his own. When he’s at the clinic he will see dogs and cats too.

Yennifer is the lead Tech. She’s hard on her techs but they all know she does it for the good of the animals. She’s not great with clients.

Triss is basically her right hand and takes over if it’s Yen’s day off. She’s great with people and is usually the one to take scheduled euthanasias. It takes a lot out of her but she pretends it doesn’t effect her.

Letho is the muscle, and usually tags along with Geralt to help restraint with larger animals. He tends to intimidate people in the clinic so he’s happy to stay on the road most the time.

Coen is also the muscle but tends to stay at the clinic as he’s better with people. He can get a mastiff on the surgery table with little help. Though it’s catching up to him and he has chronic back pain. He has a hard time asking for help. Yen tends to scold him for that.

Iorveth runs a wildlife rehabilitation center and often brings in things to Lambert. They have to make sure his appointments are on different days from Roche(who helps Foltest with his show and hunting dogs. Basically a glorified assistant.) or the two will argue for hours in the waiting room if they run into each other.

Jaskier fosters animals constantly (he has a big heart and a deep wallet, what can he say?) so he’s commonly bringing in dogs and cats and the occasional exotic to make sure that they are healthy and can be rehomed. He flirts with everyone. All the time. Also a lot of business comes from people who he refers to the clinic.

Aiden is another tech. He has a way with cats that no one else does. Even clients are surprised. A lot of cat owners ask for him by name because of it.

Gaetan is a kennel tech that wants to become a vet some day. He dreams of opening an all cat hospital and roped Aiden into the idea. Lambert thinks they’re crazy.

Vesemir used to be a large animal vet but now works the books for his boys.

Ciri is Geralt’s god child and dreams of becoming a zoo vet some day and spends most of her time not at school at the clinic with Geralt.

That’s all I got for now, may add to it. If anyone has suggestions or head canons let me know. Also PLEASE if this inspires fanart or fanfics tag me.

[cookinguptales]

ooooh love that 4 am chronic illness venting

sometimes I think the worst part about having a chronic illness is accepting that, in many ways, it will never be as good as it is now. I can be in awful pain, I can be exhausted, I can be barely functional at work and I still know things are only going to get worse. like. god. if I'm this bad at 34 how the fuck am I going to be when I'm 50?

I couldn't even get through one film festival. my hormones have been acting up since I got back to Philly, probably brought on by all the travel and stress about work, and I spent a solid two weeks with my ribs and hips dislocating and the first three days at the festival were just me being in so much pain that I would go to the restroom and cry between movies.

that's what having a good time apparently looks like these days!

and then my ribs start calming down just in time for a heat wave. 85 degrees. god knows I can't go out in that anymore, because this body can't do fucking anything right. okay, fine, whatever. then my period finally comes a week early, seems about par for the course with whatever the fuck is going on this month, and the endometriosis is so bad that I could barely get out of bed yesterday, much less make it to center city.

so in the end, I have so far made it to 4 of the 10 days of the festival, and I don't have much hope about the last two. I have to come to terms with the fact, now, that maybe I can't even handle film festivals anymore. I can't handle going into the city and sitting in a dark room for a week now???

I feel like I've wasted all this money on something I was really excited about, because I used to really love going to the film festival. but have we devolved to the point where I can't even do this anymore?

like I know that this month is irregular, for several reasons, but I can never depend on a month to be regular anymore! I can't plan a trip three months in advance because I don't even know how I'm going to be three days in advance anymore! do I just give up on making plans in the future? do I give up on looking forward to fucking anything anymore?

and I know that the mood swings are part and parcel of having pmdd (I had ~three~ panic attacks yesterday) but also like. god. at a certain point how can you handle balancing work and trying to have fun while your rib is literally sticking out of your fucking back. you can feel it! when you touch! my back!

and at what point does a mental breakdown become inevitable, dealing with that kind of pain? when you're also dealing with about five different work deadlines and you still want to make art but you have no time for it and when you finally have time, nothing you write is any good.

all that and I'm supposed to have fun, too? I feel like every time I carve out the least little bit of fun for myself this october, the month I am supposed to enjoy the most, I spend the next three days paying for it.

I feel like I just. I'm at the point now where I physically cannot leave the house ten days in a row anymore. I can barely handle three days in a row. I'm not even doing anything. I'm just sitting there, but apparently the act of taking a bus to a building and sitting in that building is too much for me now.

I know I've been kind of irritating to be around for the past few weeks, but I am just exhausted. and today I'm finally clearing the joint pain, I'm finally clearing the nausea and inability to eat (which of course makes me sicker), and I'm just. I'm so fucking tired. I can't even enjoy not being in (as much) pain for a few days.

and of course trying to scrape all this together, I haven't been able to clean the house, so it looks like shit and I feel like shit about that, too.

I don't know. some days when you have an incurable illness that you know is just going to get worse over time it's just. I don't know. it's hard to have any hope at all. I feel like I'm going to die alone in a filthy house because I don't have the energy to be a real person anymore.

like I go visit my parents and I'm always so glad to get home because I love them but I also need my space but there's always that realization that like. oh right, living alone is really fucking hard. some days I can barely even feed myself. I feel so useless.

I know that withdrawing from my friends is probably the opposite of what I should be doing right now, but it's also. I don't know, sometimes I feel almost ashamed to let them see me when I can't even pretend that I have my life together. like usually I can at least pretend that my body isn't weighing me down too much. letting people see me when it's very, very clear that I am hanging on by a thread feels far too vulnerable.

I guess some piece of me feels like if I let people see the awful underbelly of what it's like to actually be disabled, they'll be disgusted with me. like. sometimes disability is just we have to walk a little more slowly at the museum or I can only eat certain foods when we go out or I get way too chatty because I'm exhausted and I lose my filter when I'm exhausted. but sometimes disability is not showering for a week and a living room that's covered in garbage and unpacked suitcases and sitting in your bed and crying for hours. like. there's nothing glamorous about it.

I feel like I have to work so hard and pretend so much to even reach "tolerable" to other people but I'm not even tolerable to myself right now. even on my best days, when I can go out and hang out with people and pretend that I'm okay, I know that I will be going home to a messy house that I will never invite people to because it's embarrassing to admit that I live like that, not because I want to, but because I have to.

but I can't even do that anymore, I can't even go out for a few hours and pretend that I'm normal and well-adjusted and not at all a burden to my friends and my family and my community.

I don't know. I don't know. I'll be okay. I always end up okay. but I feel like having a chronic illness means mourning a thousand different opportunities you had to give up because you were home puking or whatever, and right now I'm mourning a film festival.

or at least the me that could go to film festivals.

[lifewithchronicpain]

Dr. Charles LeBaron is a medical epidemiologist who worked for 28 years at the Centers for Disease Control and Prevention. LeBaron was not directly involved in the development of the CDC’s 2016 opioid prescribing guideline, but knew colleagues who were and largely supported their efforts.

Then LeBaron developed crippling pain from a meningitis infection and learned firsthand how the CDC guideline was harming patients. While hospitalized, he screamed into his pillow at night because a nurse -- following the CDC’s recommendations -- gave him inadequate doses of oxycodone. The pain relief only lasted a couple of hours, and then he had to wait in misery for the next dose.

“I hadn't experienced the pain so that many patients feel, so I hadn't had the level of sensitivity to the issue that would have benefited me. It took full personal experience to straighten me out,” said LeBaron. “You'd rather be dead than in pain. In that bubble of pain, it really is life changing.

“Once you experience that, you tend to view things very differently through a very different lens. At least that was my experience. There was nothing like being in acute pain.”

LeBaron eventually recovered from the infection and no longer needed oxycodone. But his experience made him wonder if the CDC -- his longtime employer – made mistakes in developing the opioid guideline. That’s when he saw the CDC’s push to limit opioid doses was based on weak evidence and the false presumption that many patients quickly become addicted.

Most of all, he was shocked at how quickly the CDC’s guideline was adopted throughout the healthcare system. He’d never seen anything like it, in all his years at the agency.

“Most of the recommendations we come out with, that people should eat right, exercise or whatever, no one ever bothers doing. We have a tough time getting people to do things. This recommendation? They just had remarkably fast implementation,” LeBaron told PNN…

…“The problem here was not the motivation, the notion that if you can kind of reduce prescription opioids, maybe you'll reduce subsequent addiction. The problem was not looking at the thing sufficiently quantitatively and then not checking the consequences, or at least responding to the consequences when they're brought to your attention.”

People working in public health are normally careful about tracking the outcomes of their policies. But before and after the CDC guideline, the agency turned a deaf ear to a chorus of complaints that it was forcing patients on long-term opioids into rapid tapers that resulted in uncontrolled pain, withdrawal and even suicide.

Worst of all, the number of fatal opioid overdoses doubled to over 80,000 annually after the guideline’s release, an outcome that demonstrated CDC had gone after the wrong target at the wrong time and with the wrong solution.

“The typical person who's having an overdose is a 30-year-old male taking illicit medication. The most typical person who's getting chronic opioids for pain would be a 60-year-old woman with a variety of rheumatological conditions. So you're aiming at a completely off-center target,” LeBaron explained.

“Then subsequently the data started coming in that, in effect, you are worsening the situation. If you take people who really need pain control off their meds, in a sense, it normalizes illegal acquisition. (Read full article at link)

I don’t generally wish chronic pain on other people. But I tell you what, if doctors having an experience with under treated chronic pain is what it takes to give them some fucking perspective and empathy on the opioid crisis, then so be it. I hope they all do.

[jlhynde-insanitybrilliance]

UDLTTOM Worldbuilding rambles: UNFORGIVABLE CURSES—Why are the so unforgivable?

This is a thought that’s been bouncing around in my head for awhile. (It’s going to be a little rambling.) You know that saying that a person dies twice, first when they die, and second when the last time someone says their name. Well, this thought is sort of a mix of that and some sort of personal philosophical views on death that I have. I’ve reasoned to myself that there are 3 different sides to death, not just two. Essentially, when I think of death, I separate it into the following 3 parts:

Death of the Body: The most visceral and visible of the three, it’s the physical process of the body wearing out and shutting down. It’s a disconnecting from one’s own flesh, an inability to do what you once could, aches and pains, paralysis, etc.

Death of the Mind: Not as noticeable as the body shutting down, but the mind also shuts downs during death slurred speech, loss of awareness/memories, in ability to distinguish reality from disillusions, etc.

Death of the Soul/Spirit/Will-to-Live: Most common example of this I can think of is chronic depression or someone suffering through extreme, physical, emotional, or psychological trauma. Essentially it’s someone who’s given up on life spiritually, but might still mentally and physically still be able to function.

Over the last year, I’ve been thinking a lot about these 3 facets of death. I’ve watched my mother go through them as she battles terminal cancer. And I guess maybe I had a sort of epiphany when I started thinking about this in relation to the Unforgivables in HP.

Why are they so unforgivable?

At the surface level they seem like kind of basic spells, right? The killing curse kills, the torture curse causes pain, the mind control curse controls peoples’ minds, yada… And I think most people agree that killing, torturing, and controlling people is morally reprehensible and just on that context alone we as the reader can understand why they are illegal. But then you see other spells or potions that kill, and torture, and control people and you wonder why these sort of spells aren’t treated with the same severity as the Unforgivables.

So why? I asked myself: What makes the Unforgivables so Unforgivable? And then I thought about Neville’s parents and the after effects of the Cruciatus and how they had to be held in St. Mungos for the rest of their lives. On the surface my first assumption was that they were obviously driven to madness from the hours of torture, and suffering from severe PTSD, paranoia, etc. But what if the cruciatus has physical symptoms? What if the reason Neville’s parents had to be kept in a wizard equivalent to a psychiatric ward was not only because the trauma but because the spell altered something fundamentally about their bodies in relation to pain?

Which brings me to my first theory. That the cruciatus curse’s intention is not to cause pain. I propose that, in fact, it does the exact opposite under long durations. Cause think about it, the body can only handle so much pain before a person goes into shock or passes out, right? And a person’s tolerance to pain can also increase with repeated exposure to it. So following that logic, I think the cruciatus curse would only hurt for like a few minutes at most before the body would go into shock. And once the body is in shock I think something funny would happen with the pain and pleasure centers in the brain (I’m no neurologist btw, but what little I know of this sounds plausible to me) that the wires could get crossed and the body would start associating pain for pleasure. And afterwards I feel like when your nerves get fried in a fire and it creates a numbness in the body, a detachment from one’s own flesh that can only be relieved by experiencing intense pain. Except the person doesn’t actually associate the pain as being painful, but with pleasure and so they develop a compulsion for self-harm and self-mutilation. Which adds such a horrific context on to this curse. Because this compulsion is incurable. The brain has been irreversible rewired to associate pain in this way, so either you go through life being physically numb unable to feel your own body or chasing some kind of feeling through torturing yourself.

And jumping off of this thought, I then considered if the cruciatus disconnects you from your body, the Imperius curse has to disconnect you from your mind, right? I think you have some sort of awareness when you’re under the imperius to be able to resist it. But again maybe that’s only for the particularly resilient wizards? It makes sense to me that for most it would be like a total blackout, dissociative state. So prolonged exposure I think would not only effect short and long term memory, but also a persons ability to be fully present in their day to day life. I think of the after effects being similar to a dissociative disorder where the person is constantly being disconnected from their own conscious reality.

And finally there’s the Killing curse, which rips the soul from the body causing the person to just drop dead. And obviously because the person dies there’s no real after effect, right? But then I remember that scene with Slughorn and TMR discussing horcruxes:

TMR: And how does one split his soul, sir?

Slughorn: I think you already know the answer to that, Tom.

TMR: Murder.

Slughorn: Yes. Killing rips the soul apart. It’s a violation against nature.

Which my first thought seeing this scene is that if Slughorn thinks killing is a violation against nature, he’s clearly never watched a nature documentary. I mean if Casual Geographic has taught me anything is that the animal kingdom is naturally violent and the kind of shit animals get up to in their spare time is what would put any human in prison on a life sentence, but I digress. So I had to think about this from a different perspective. So then I think about what the purpose of Horcruxes is, to split the soul and place it into object and tether yourself to the physical world. And what curse do we know that severs the soul?

The killing curse. Slughorn says killing rips the soul. But I think Tom misinterprets this to mean murder, when the professors is in fact talking about the killing curse itself. And what we know from the Unforgivables is that you have to mean them to successfully cast them. So following that line of thought, in relation to LV’s horcruxes, Tom would’ve had to cast the killing curse on himself repeatedly. Which means that Tom Riddle had to have an incredible sense of self-loathing, and there had to be something—a personality trait or the like—that he despised so much that he wanted to kill it and cleave it from himself forever. Which in that context, suddenly Slughorn’s words make a bit more sense because suicide is going against that inate survival instinct that all animals have. And for Tom in particular, it squaring up and facing the one thing he is most afraid of (which might explain why it took him so long to make the first horcrux to begin with.)

And the degradation of Tom Riddle into Lord Voldemort as he makes more and more horcruxes is the effect of the killing curse & why it is so unforgivable.

I have so many thoughts on this topic of horcruxes & Tom’s deeply ingrained feelings of self-loathing, but I’ll probably save those for another post.

[elysia-nsimp]

TWST Headcanons!

Hello everyone! I'm starting a new series where I infodump about my headcanons for twst characters. Feel free to request certain characters if I haven't done them already. To start off, here's Jamil Viper! Please ignore the awful quality I swear I tried to fix it

So to start off, what changed physically?

His right eye isn't grey--it's muted green with red in the center. This is the eye his signature spell primarily comes from, which is where the red came from.

he has an eyebrow cut because i have one and its COOL

He has a widow's peak! (That's the point in his hairline, if that term is unfamiliar to you)

He has long, pointed ears. I will elaborate later.

He also has several gold earrings! He has 3 hoops on his other ear.

His tongue is split at the edge. It's not super visible in this card, though.

He also has a tongue piercing, it's a teardrop-shaped Ruby. He takes very good care of it.

Lastly, he has LONG fangs. They poke out of his mouth a little bit.

Elysia, what are these changes for?

Great question! Almost all of these have an explainable reason (except the eyebrow cut and the split tongue thing I just decided he would do that just because), and I'm here to explain them!

So to start off, what is Jamil? In canon, he's a human, pretty simple, but I decided humans are BORING and Jamil deserved to be non-human like the other super cool epic characters like the twins and Malleus (personal opinion alert). In this AU, Jamil is still partially human--mostly human, even--with both his parents being human (mostly), but further up his family tree, there are traces of both gorgon and genie ancestry. How'd he get those in his family tree? Well, long long time ago, an ancestor of Kalim found a lamp that Jafar used to inhabit. As their final wish, they freed the genie. As thanks, the genie decided to stick around and continue to offer help here and there. That genie found a partner out of their lamp, and thus, began the Viper family. Somewhere along the line, one of Jamil's relatives fell in love with a gorgon. Does this mean Jamil can grant wishes? Absolutely not. However, it IS why his family has been serving the Asims for generations.

What new abilities does this grant Jamil?

Honestly, not many changes about him. He isn't even aware he's not fully human, though he has questioned why he looks different than others. Here are a couple things that have been added or changed, though.

He's more inclined to want to help you if you preface whatever you want with "I wish" (he does not even notice this, do not mention it)

He's venomous! If he bites you, it'll paralyze you for about a half an hour, maybe an hour at the worst. He doesn't use this ability much... only if he feels like he or Kalim is in danger or he just REALLY wants someone to shut up.

He reall.y likes lamps.... he has no clue why he just likes lamps

His emotions are slightly easier read, because his ears tilt up or down depending on how he feels and he has zero control over that.

He has a slight lisp that he has spent YEARS training himself out of because of the fangs. It's barely noticeable if you're not listening for it.

Some other headcanons!

These are unrelated to the species change, but still worth mentioning!

Jamil's bisexual, but he was in HEAVY DENIAL for a DAMN long time. He just prefers he/him.

oh boy here's some diagnoses for you: Major clinical depression, anxiety/paranoia (lesser impact), C-PTSD, AUTISM!!!!!!! (he just like me frfr) (also he lives in his mask so it took him a while to figure that out), POTS, assorted other CHRONIC PAIN that hasn't been diagnosed yet

He collects gold jewelry because Kalim used to always want to buy him gold things. Its kind of just become habit to collect anything that looks gold because it was one of the nicer things in his childhood.

He takes EXTREMELY good care of all his jewelry! Especially the tongue gem, since it's the most likely to get infected.

Jamil has joint issues. It's not so substantial that he can't function, but sometimes his arm will pop out of place or ache like all HELL if he overworks himself too much. This is what he uses the arm brace for and why you see him rubbing his arm often. (this is partially based in canon, partially projection because I too am in chronic pain)

mention whipped cream around him and he will go insane (/neg/hj) (based on other RPs he's been in where it's a running gag revolving around him)

He and Najma both don't have great relationships with their parents. Especially after Book 4 and some mandated therapy, Jamil grew bitter of how much his parents pulled him back and made him fear just... talking to Kalim (ofc a lot more went into his blaming of Kalim, but his parents' influence was extremely damaging).

Jamil is extremely overprotective of Najma, even if he acts like she's a major nuisance in his life.

One time he passed out in front of Najma (which made her panic), only for him to sit the fuck back up, walk to the kitchen, and down an entire thing of salt in front of poor Najma's very eyes. She was HORRIFIED, but started laughing once he confirmed he was okay. (This is related to the POTS)

Jamil knows how to pick up fingerprints and has done so on several occasions (mostly to catch Najma after she stole his food)

This is all I can think of off the top of my head. This post may be edited in the future, but for now, thanks for reading my first in-depth headcanon post!!!

[heartshapedgreen]

re: last rb, i have so much to say about the demonization of androgens & the way hyperandrogenism intersexies are kind of regurgitating that by taking their diagnosis and biased researches for granted. dyadist research will usually mention androgen excess and estrogen excess in isolation from the other hormone, nothing about progesterone or estrone, or the fact we all have these hormones working together in different ways, we all have a menstrual cycle (yes, even those who don't bleed - that's just one symptom of a period - and the "male cycle" which centers testosterone cycling every 24 hours is bs cause everyone's testosterone - usually - does that) AND your menstrual cycle is as unique to you as your fingerprint. that's why we all look so different.

like i grew up with high levels of androgens, had a precocious puberty & i'm now going thro puberty no. 2. i suspect high levels of estrogen (relative to my progesterone, everyone forgets her) with androgens prolly decreasing because My God The Pain™️ (& i have very high pain tolerance). i recently developed incontinence issues and really bad pelvic floor dysfunction with chronic pelvic pain. testosterone deficiency leads to chronic pain btw & testosterone is known to help with cfs and fibro. personally increasing my probiotics & fiber has helped immensely (you poop out excess estrogen, and i have ibs-c LOL).

having dealt with dysfunction with both the 'mones, i have to say i much prefer my baby days of growing body hair at 7y/o rather than severe pelvic pain where i can't move and have to do postnatal physiotherapy for it. & knowing i'm just going to get worse and worse with age. my fertile family members would pop out babies every year to stop the symptoms of hyperestrogenism btw. what financial insecurity and no medicalcare does to a bitch.

anyways. what they don't tell you is that androgens and estrogens are both pro inflammatory & anti inflammatory + they work in tandem, and estrogen dominance can be a Bitch. & the virilization that comes with, for ex, PCOS? that's from androgen secreted from the ovarian cysts (which can secrete estrogen too & that's also not good). the androgen excess is a consequence, not a cause. acne, hirsutism, menstruation irregularities are consequences of the inflammatory processes.

and those cysts? most likely caused from various dysfunctions in the body. i'm not a doc (thank god), but something something metabolic dysfunction something. the thing about androgen (and estrogen) being pro iflammation? it becomes a feedback loop of inflammation > high levels of androgen/estrogen secreted > More inflammation. working on the root cause, decreasing inflammation (whatever this means for you) is more likely to help than the way fatphobic and interphobic docs will tell you to lose weight or reduce your testosterone. you also need your testosterone. hirsutism is not the be all end all.