#chronic advice

[800-dick-pics]

Black History Month Isn't Over Just Yet, Help Me Get a Wheelchair!!!

I am a Black Chronically ill/Disabled Lesbian. I have been a mobility aid user for over a decade, and with my most recent illness flare and health set back, I desperately need a wheelchair. I have put off getting a wheelchair for years but my health is to a point where I need a wheelchair to function outside the house or I cant leave my house at all. Being stuck inside my house has done a toll on my mentally, and has prevented me from having consistent meaningful employment.

I have been saving for a wheelchair but I am nowhere close enough to buy the wheelchair I need, new adaptive tech, and the 2 ramps I need for my home. I am hoping to cr*wdfund for just the price of the chair not the ramps or adaptive tech. I need 1,120 to cover the cost of the chair.

CA: $sleepyhen

VN: wildwotko

DM: for PayPl

If you can help I would deeply appreciate it! Getting this chair would mean that I can leave my home safely, regain meaningful employment and see some of my aging elders again!

[toothtalk]

a neurodivergent spoonie's guide to having teeth

LEGAL DISCLAIMER: This blog is for educational and informational purposes only. This does not constitute providing medical advice or professional services. Information on this blog should NOT be used for diagnostics or treating a health problem. Always seek the advice of your doctor or other qualified dental health provider regarding diagnosis and treatment of a dental condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog.

this is as close to a comprehensive guide to dental care as i can make. i'm autistic/adhd/ocd/chronically ill and i've worked in dentistry for several years. i want to use my knowledge to help other spoonies struggling with dental care. i know it can be really hard, but dental health is so important and we deserve healthy mouths just as much as NT/abled folks!!

being neurodivergent and/or chronically ill can make personal care tasks incredibly difficult. so many of us struggle with washing our hair, getting dressed, and cleaning up. but remember: hair will grow back if it's damaged, clothes can be washed when they smell bad, and a dirty house can be made clean again, but we only have one set of teeth to last our whole lives. those pearly whites are worth taking care of!

these tips are based on feedback/questions i've gotten from ND folks on tumblr and facebook, patients at the practices i've worked in, and my own experience. standard disclaimer that this information will not be applicable to every single person, just take what works for you and pass the rest on to the next person. i am also a resource for further information. this is going to be pretty rapidfire, so if you want me to elaborate on anything or have a question about something i didn't address in this post, my askbox is open and anon is enabled. i love talking about teeth and i would love to help my fellow spoonies take care of theirs!

without further ado:

on homecare:

any dental professional will tell you that having good oral health starts at home. taking care of our teeth can be incredibly difficult when our spoons are low, so i've made a list of strategies to make it easier.

best practice is to brush twice per day and floss once per day. this may not be realistic for those of us who struggle with habits and/or executive dysfunction. if you can only remember to brush once per day, brushing at night is the most important.

the ideal order of operations is floss, tongue scrape, mouthwash, then brush. but flossing and brushing are the most important steps in the routine.

brushing your teeth in the shower is perfectly acceptable! personally, i keep one toothbrush in the shower and one on the sink to maximize my opportunities to brush.

if you don't have the energy to floss, a toothbrush with fine bristles like this one is a good compromise.

you should replace your toothbrush or electric brush head every three months. the bristles get worn down and become less effective over time. set a recurring event on your phone calendar to keep track!

if you find it difficult to brush your teeth at all, use a washcloth to gently scrub your teeth until you feel that you've gotten the film off, then use a fluoride mouthwash. they also make single-use waterless toothbrushes like these. i like to keep them on my nightstand for really bad days when i can't even get myself to the bathroom to brush.

this is an excellent guide on proper brushing technique.

an electric toothbrush is an excellent investment. even a cheap one at the grocery store is a huge step above a manual toothbrush. personally, i love quip because they're more affordable than brands like sonicare, and they send you replacement brush heads on a regular basis.

be careful not to brush too aggressively; your brush should glide gently over the surface of your teeth. if you feel a lot of friction, lighten your pressure. brushing too hard can wear away your enamel and damage your gums.

if the mint flavor in toothpaste triggers sensory discomfort, try kids' toothpaste! it has less fluoride than adult toothpaste, but it's still miles better than not brushing at all.

mouthwash is used to neutralize bacteria on soft tissues. use an antibacterial or fluoride mouthwash for healthy gums and strong enamel. listerine original is the best, but they have lots of varieties including gum health, alcohol-free, and many more.

whenever possible, use a straw to drink soda or coffee so it doesn't touch your teeth, and rinse with water after you drink it. try to not sip sugary drinks throughout the day. switching to sugar-free beverages will make a huge difference in cavity prevention.

if you have any gaps between teeth, an interdental brush will help you keep the areas between those teeth clean and prevent decay.

i like to keep a package of floss picks in the living room so that i can floss while i watch tv. the best time to floss is right before you brush your teeth, but there is no bad time to floss.

this video shows proper flossing technique. this video shows proper technique when using floss picks.

dry mouth is a lesser-known cause of cavities. saliva protects your teeth from decay, so when you don't produce enough of it, you're at higher risk. dry mouth rinses like this one are a great defense against this!

remember, something is always better than nothing. brushing once a day is better than not brushing at all. flossing once a week is better than not flossing at all. be gentle with yourself.

on finding a dental provider:

finding a new provider and making an appointment can be confusing and overwhelming when we have low executive function. there are some ways to make it just a bit easier.

if you have insurance, they likely have a tool on their website to find providers in your network. you can usually find this information on your insurance card. this should narrow down your options considerably.

the absolute best thing you can do is find a supportive provider who you can open up to about your struggles with dental care. look up your options on google reviews and ctrl+f "anxiety". if these anxious patients have a good experience, it's more likely you will too.

you can ask for recommendations in your local community's facebook group or subreddit, both of which offer anonymity. specify your needs in your post. chances are, other people in your community have similar needs, and can help you find the right people to meet those needs.

a few people expressed that they avoid the dentist because of a family history of poor dental health, and the fear of having the same problems. i want to assure you that, while dental health does have a genetic component, it is far from the only factor. the most effective thing you can do to prevent dental issues is to go in for regular maintenance. prevention is the gold standard in dentistry.

a lot of us struggle with making phone calls. luckily, it's becoming increasingly common for practices to allow online booking and communication via email. look for these options on a practice's website!

if fear or executive dysfunction is getting in your way, phone a friend for help. sometimes things that are hard for us aren't as difficult for others. maybe your roommate can call the office for you. maybe your sister can drive you to your appointment. don't be afraid to lean on your village.

in the dental office:

a big issue with dental offices is that they are basically a sensory nightmare. while it's never going to be fully comfortable, there are some things you can do to make your experience more tolerable.

be open and honest with your dental providers. if you smoke, tell them (this includes cannabis; they cannot report you for cannabis use even if you're not in a legal state). if you've never flossed before, tell them. their job is to help you, not shame you. if a provider makes you feel ashamed, stop seeing them.

so many people have mentioned they're embarrassed about their anxiety and sensory struggles in the dental office. let me assure you that your providers see so many anxious patients every single day. they're used to it, and they're not going to be judging you. to help illustrate this, i'm going to cite some examples of patients from my practice and the ways we help them manage their anxiety and sensory struggles.

probably the most common concern among patients in our practice is a fear of the numbing injection. i have a pretty severe phobia of needles myself. our dental assistants are well-trained to manage this fear. they distract patients during the shot, and help them breathe through the anxiety before and after. this training is part of the dental assistant certification process, so it should be relatively universal.

you can bring a comfort item with you. be it a stuffed animal, a video game, a book, even a comforting person who can sit with you.

you know that lead vest that they lay on you when they take xrays? you can ask to wear that during your whole visit. it acts like a weighted blanket and it feels so nice and comforting. we have a few patients who do this at my practice.

headphones or earplugs are a lifesaver to drown out all the horrible sounds. i literally refuse to get a cleaning without them. there's even a hygienist at my practice that wears earplugs while she's working because the sound of the cavitron bothers her. there's no shame in it whatsoever.

if your practice offers it, nitrous oxide is a great option for anxiety. most people know it as laughing gas. it puts you in a dreamlike state so you're more or less unaware of what's going on. no joke, this stuff had me so relaxed i fully fell asleep while getting a root canal. you can even get it when you get your cleanings!

a lot of our patients request a specific doctor, dental assistant, and hygienist for their appointments. this is incredibly common. if you find someone that makes you feel safe, let the scheduling staff know that you'd like to see that person each time you come in.

dress comfy. there's no dress code for the dental office; show up in sweatpants if you want.

remember at the end of the day, your dental providers are not there to judge you if you don't have perfect homecare. their ultimate goal is to get your mouth healthy no matter your starting place. i can't speak for every dentist obviously, but the dentists at my practice are incredibly patient and sympathetic and have nothing but their patients' best interests in mind.

again: if you feel disrespected or shamed by your provider, find a new one who will be compassionate with you. you don't owe any provider loyalty, even if you've been going there since you were a toddler.

on recovery:

one of the hardest things to do is build healthy habits when you're starting from an unhealthy place. if you're dealing with poor dental health, getting your mouth healthy again can seem impossibly daunting. i'm here to tell you it is possible, but it takes work.

it starts in the dental chair. your provider should communicate what treatment is the highest priority, and they will start there. rather than overwhelming yourself with the big picture, focus your attention on the next step.

things like root canals, crowns, and periodontal treatment can be very expensive. unfortunately, in the united states at least, dental insurance is quite lacking across the board. if expenses are a concern, dental schools are a great option for having treatment done at a low cost. keep in mind that treatment will often take significantly longer due to the dentists being supervised students.

my job in the practice is treatment coordinator. this means that i work one-on-one with my patients to help them understand their treatment plans and make the process as easy and comfortable as possible for them. ask your practice if they have a treatment coordinator. if they don't, suggest that they create the role, and reach out to me here. my dream is to be able to help people manage their oral health. i will be a resource to anyone that doesn't have a treatment coordinator available to help you navigate your course of treatment.

any restorative work (fillings, crowns, etc.) that you have done has to be cared for, just like virgin teeth. cavities can still form underneath fillings and crowns. make sure you are keeping your regular hygiene appointments, and use the above strategies to effectively care for your restorations at home.

if you have a lot of treatment to work through, it may take a long time. we have patients that have spent 2-3 years working through their treatment plans with us. this can feel daunting and depressing. but remember, it's not forever. the majority of these patients who continue to see us for regular visits only have 1-2 new cavities at a time, if anything, once we finish their initial work.

there are very few dental problems that cannot be fixed. cavities can be filled, crowns placed, root canals done to save teeth that are severely decayed. gum disease cannot be cured, but it can be very effectively managed. i see patients all the time that come in expecting to lose all their teeth and need dentures, only to be relieved when we tell them only a few teeth are truly not restorable.

my job revolves around patient education, and it's always shocking to me how little we are taught about caring for our teeth. please be kind to yourselves; it is NOT your fault for not knowing or having the resources to take care of them yourself. once again, my askbox is open and anon is enabled if you have more questions after reading this guide.

[thebibliosphere]

Ugh, yesterday I had a blessedly short migraine attack (only 13 hours in the acute pain stage instead of 29) and now today I’m rebounding.

It’s not fair :(

——

This is a vent post; do not offer unsolicited advice. I do not want advice. Anyone disregarding this request will be blocked.

[incorrectbatfam]

One thing I rarely see in injury and chronic pain fics is the grief that comes with missing out on stuff you love because you can no longer do them without hurting yourself. Writers who have been disabled their whole lives (or at least a long time) tend to forget that not all disabled people are used to being disabled. For able-bodied characters, especially athletic ones like vigilantes, a serious injury could mean a jarring change that includes giving up the things that mean the most to them.

I was physically fine until I was 18. Back then, my sense of self was entwined with interests that required a lot of movement and dexterity. I started doing MMA in middle school for self-defense. I loved parkour and even had a few hundred subscribers on my old YouTube channel. I learned to shoot and was gifted my first gun when I was 16. I took up multiple instruments. You get the idea.

My motorcycle accident fucked up the joints on my left side—my knee and shoulder especially, but also wrist to an extent. When it first happened, I thought I'd be on crutches for a bit but things would eventually get back to normal. The pain didn't go away even after I got rid of the crutches but I figured it was just residual and I should do what I'd been doing before. It's why I turned to substances—to block the pain and do what I love, but that's another topic. I didn't recognize my injury as a disabling thing until the end of the pandemic, when I put my parkour channel on an indefinite hiatus because it was seriously wearing my body down. It might sound silly to you but I was devastated. It's like if Spider-Man wasn't allowed to swing from buildings. It took me a long time to make peace with losing that part of me.

Another piece of that grief is even when you can do stuff, it's not the same because you have to exclude certain aspects of it for your own health. It's like the Robin that died and came back wrong. I can't use certain gym equipment and I have to tell my sparring partners what to avoid. I don't go to the shooting range much now because I can't extend my arm and hold a rifle for the amount of time it takes to aim without it starting to hurt. I'm a drummer, but I need breaks throughout the setlist and I can't do anything too fast or complex with the pedals, which means I can't play some of my favorite songs and my band is limited in what we write and perform. I can't take my motorcycle on road trips without frequent rest stops. Making accommodations helps physically, but emotionally, they're not always easy to accept because that means accepting the pain as a long-term disability rather than a temporary setback.

This got super long because I think it's unexplored in fics so some tips for creators:

First, learn how the body works and how stupidly fast and easy it is to get hurt. Mine was on a residential road because I didn't pay attention for 0.2 seconds

Learn the difference between internalized ableism and being upset over becoming disabled. I think a lot of writers skip over the feelings someone would naturally experience because it can be construed as ableism. Let them be in denial, sad, angry, etc. upon finding out because acceptance almost never happens right away. That's different from being a dick to themselves or others based on disability

Also, not everyone uses the same labels or has the same vocabulary to describe themselves. Different characters will have different ways of describing depending on their personality, level of knowledge, where they come from, and their relationship with their disability. I still don't really call myself disabled since I don't have it as bad as others so I tell people what happened instead (anyone who says "differently abled" will receive a different ability from me in the Denny's parking lot)

Think about how they cope with their new disability. Do they realize it's a disability right away? Do they talk to someone? Search desperately for a cure? Numb the pain? Turn to alternative methods? Do they worry about something else first, like money? Do they develop something else because of it, like a mental illness? Again, coping poorly is not ableism

What stays the same and what changes? I think about the difference between Forrest Gump and Lieutenant Dan after they were both wounded in battle

If they have a passion they can no longer pursue, it doesn't make much sense for them drop it so readily. Maybe they find a way to continue with accommodations (a good place to get creative!). Maybe they try and push through anyway. If they do ultimately resign, include the thought process and internal conflict behind it

[cosmicredcadet]

I don't think a lot of people realize that lot of their advice to disabled people often boils down to "Get over it." they are trying to be helpful but their idea of helpful is "Just do the thing" because that's what they do. for them they just do things. It comes naturally to just do it.

They don't know how to bridge the gap between you and the task. For them the bridge is already pre-built and stable. For disabled people the bridge is run down, not well kept, it feels unsteady and is hard to get across without being slow and cautious - hell for some people there is no bridge and we need to build it ourselves but we don't have the bridge building tools and no one gives them to us.

"Just cross the bridge." They say before walking over their pre-built bridge. They never gave you the tools to build a bridge to cross.

[spread-positivity-everywhere]

[lifewithchronicpain]

If you don't need a cane, but you get one to signal disability because sometimes you get faint and need to sit, or whatever, as a cane user for years, go ahead. Please, if it makes claiming accomodations easier for you, even if you don't need it to walk, I don't care. This is your permission if you needed it.

Can I suggest that you can get a foldable one at CVS (they're great) so it's there when you need it? Shits fucked up, do what you need to do. Just beware there are assholes that won't care about the cane. But overall, it does make things easier and is easily purchased. Go for it.

[the-archenlandian-court]

Things I wish I knew before I got diagnosed with a chronic illness

You’ll forget - Sometimes you’ll straight up forget you have a condition, that you have a disability, and that others don’t feel like you

Your most important job is to stay alive - Everything else is secondary, as long as you stay alive you have achieved something

It’s okay to cry - It’s normal, chronic illness is sucky, but don’t cry for too long or focus too hard on everything that’s wrong because it will make things worse

Your body is in a war, be kind - Your body is constantly fighting against itself, give it time to rest and heal, eat food and drink, do what you can to aid in the battle

If you feel like you can’t do it, you can - Have a cry, eat some ice cream and have a nap, when you wake up you’ll find the strength to keep going

Some advice from younger me; January of 2021 (I just found it stashed away)

[hypokeimena]

it makes me so so crazy when people are like the existence of magic means that you need to do science to the world harder. this is common in portal power fantasies and also i'm back to reading dogshit hp fic for the fascism essay and it's so common there too. but.

if magic is real i don't know why you'd double down on science (a worldview which doesn't account for magic being real) instead of trying to come up with something interesting to say

scientific rationalism is an incredibly modern worldview and while it's challenging to take yourself out of it bc it's how the vast majority of us were. raised and educated and acculturated. it does feel genuinely disrespectful to the. humanity of people who lived in the past, to me.

like there's plenty of things where historical people were incorrect about the causes or effects of things. but an attempt to make sense of the world that accounts for "things we don't fully understand" is maybe a reasonable approach to bring to things we don't understand yet. including things that are obvious metaphors with some component of truth to them. so like.

do i have ptsd bc of biological changes to my brain. do i have ptsd bc spirits are attacking me. is there a difference.

and it's not like people don't still engage in magical thinking all the time but they pretend it's based on science. like the way people (general people, popular science, not subject matter specialists) talk about chemicals in the brain is absolutely not supported by the actual science, which is a lot better at admitting when it doesn't know something than the popular imagination would like to believe. humans rely on metaphors and stories and things that Feel true in order to make sense of the world and we always have and we always will.

tl:dr you are not better than a peasant from the 1600s because you are lucky enough to have been required to attend a school that taught you the scientific method.

[neurotichunter]

Why shit like this is so hurtful to people with chronic illnesses:

I get it, if you're having a (light) depressive episode, things like this will definitely help, but ppl treat them as if they were The Cure™️ for everything, regardless of factors like severity of symptoms etc, making ppl like me feel bad bc they can't do it (like "it's your own fault that you're feeling bad, go read a book, it'll help" - no, it won't).

[davidzochi]

serperior for the new years! my first time drawing serperior too

[poorly-drawn-mdzs]

There's nothing he can't do. Yet.

(Thank you to everyone who participated in the poll!)

[buried-dog]

Just a reminder that although "my body my choice" is about women [edit: and anyone with the ability to get pregnant] this rule also applies to disabled people refusing treatment and aids.

It's my choice I don't take painkillers for my chronic pain and rather just stay home most of the time and skip lectures.

It's my choice I don't use a cane, even though I have access to one, despite the fact I could walk further with it and not limp.

It's my choice I don't do hearing rehabilitation or wear hearing aids for my APD despite the fact I can't hear lectures or my friends properly.

It's my choice I don't go to therapy or take meds for my disorders.

It's my choice and I don't care what you think. It's my right to choose those things. I know my body the best, you have no say in this.

"But you could hear better! You could not be in pain and walk normally! You could be better!" I don't care. I'm fine being the way I am. I know what's good for me. I know painkillers would hurt my body more then help for at least three reasons. I'm not a child, I know what I want and the consequences of not doing something. My health, my rules.

[chronic-lee-lizard]

Here are some filling foods for when you feel nauseous or not wanting to eat!!!

Eggs

Greek yogurt

Rice

Cottage cheese

Pastas (always a good option)

Chicken (maybe a plain rotisserie if you are needing something not overwhelming)

Potatoes, especially mashed

Soups, the broth helps :))

Overall anything protein-rich will help you feel full quicker. I know on nights when I’m feeling super nauseous but I know if I don’t eat it’ll get worse these foods have saved me lol.

[chronicillnesshumor]

[multifariousmayhem]

does anyone else with chronic fatigue feels like the day goes by very quickly? in between the non negotiable rest breaks and stuff like meals suddenly is the end of the day and there was no time at all to do anything