Disability & AAC Blog @dustbunnyaac - Tumblr Blog

[ID: A brown cartoon bunny with a cream chest and belly uses a black AAC device on a stand. End ID.]

Hello! My name is Dusty. I use just my name, no pronouns. I am a disabled adult who uses a wheelchair, crutches, and an AAC device.

Last Updated: 3/18/2026

#pinned

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i realized something while feeling awful right now

my PCP needed to submit a form to the medicaid cab company to justify why he was sending me out to a rheumatologist two hours away instead of literally any rheumatologist closer to me.

the front desk worker told me she had been trying to get me in with a rheumatologist for two and a half years before finding this place, because all other rheumatologists reject people with my specific connective tissue diagnosis. this place (two hours away) happens to have several practitioners who specialize in it.

that form allegedly doesn't have a good enough reasoning on it, and according to the guy on the phone, the only reason they listed on the form to send me so far away was "personal preference" - meanwhile their in network rheumatologist discharged me when i was diagnosed with my connective tissue disease, explicitly because it was my diagnosis.

i was feeling awful because i had to reschedule the appointment to two months from now (it was booked three months ago) because the form wouldn't be approved in time, if it's approved at all!

but then it kind of clicked for me.

it's not my fault that i am going so far away, and it's not my fault if the form gets denied, because my PCP should! have a very strong justification for making me travel over two hours away!

i need the cab because i literally cannot afford the gas to get there one way. if a doctor is sending a patient that far out, they SHOULD have a very good reason that they can articulate clearly!

it is not my fault that my PCP is failing to provide me with appropriate referrals and appropriate care! it is not my fault that my PCP did not do this until less than a week before the appointment! and it is not my fault my PCP has decided to say that the only reason he is sending me two hours away, hundreds of miles total, is because *i* have a "personal preference."

i need a new PCP and i need to stop being so hard on myself!

#bunny talk #actually disabled

phleb0tomist

it’s such a basic part of the reality of disabled people as a whole but it’s STILL so hard to get ppl to understand that some people will simply die without 24/7 care. their care is not for comfort, it’s not for fun, it’s literally a matter of life and death. “if their care was taken away i’m sure they’d learn to suck it up like the rest of us!” – something ive heard time and time again. no they wouldn’t, they would die. they HAVE died. they continue to die as cuts are made to welfare and health. why is this so impossible for people to grasp.

I've also started messing up my schedule more 😔 that or my PT/OT/speech office has been moving around appointments without telling me!

#bunny talk #showed up two hours early to an appointment #oops

Having dreams again :/

#bunny talk #I'm taking meds for PTSD dreams #they're supposed to stop my dreams #I always have bad dreams or nightmares no matter what #so this concerns me

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shamebats

The whole concept of migraine triggers is just perfectly suited for making disabled people who are already suffering waste time & energy obsessing over every single thing they do every day, especially their diets, and to then blame themselves for their attack like their problem is a lack of discipline & willpower and not the fact that they have a chronic illness. If you get migraines, that isn't because your lifestyle & diet isn't sufficiently optimized, it's because you have a migraine disorder.

shamebats

My neurologist didn't waste any time trying to get me to identify triggers and just got me on the right meds as soon as she could and I'm so glad she never made me feel like it was somehow my fault.

I'm now finally on a preventative that works for me & I literally don't do anything differently but I went from having daily migraines to sometimes not having a single one for over a week. I could do & consume every supposed trigger & still not get a migraine, when before the medication, I could do everything "right" every day for a week & still get a migraine every single day.

It's always like it's a medical disorder that causes your body to react badly to certain normal daily things & the goal should be to make it do that less, not to find ways to totally avoid all those normal daily things.

shamebats

Yeah...they're caused by migraine disorders. Because people without them don't get migraines on a regular basis.

The chocolate advice is probably bullshit too. Unless you specifically identify it as something that makes your migraines worse (unlikely), it's way more likely to just be a common craving people have during the prodrome phase before the pain starts. If it's your body signaling you that it wants chocolate, there's no reason not to eat it.

Also, my neurologist said if you take triptans, take them during the headache phase immediately when it starts, not during the aura.

shamebats

This isn't just my opinion btw, it's the current state of migraine research that shows that a) evidence for the belief that specific foods can trigger an entire migraine in someone who would've otherwise not had it is just not there and b) people are prone to misidentifying "triggers" and c) some "common triggers" have been shown in research to have protective qualities against migraines in some people and finally, d) the most up to date approach is to, instead of chasing possible triggers, raise your migraine threshold, which for some people can be achieved only with medication, but stuff like exercise & a nutritious diet could possibly also help you become more resistant too, once your threshold has been raised enough that you have the spoons for it, that is.

Learn more about how “triggers” may actually be signs of migraine prodrome and why identifying migraine triggers is not always easy.

Sometimes when people attempt to carefully track and avoid all their triggers, it creates a sense of guilt. When we think about it this way, the burden is on the person with migraine to avoid their triggers, and people may feel that if they experience an attack, it’s because of their own behavior. “Many times it is just the disease,” says Dr. Halker Singh. “This is the unpredictable nature of migraine. I think we carry enough on our shoulders as it is without the added stigma or guilt [around triggers].” Instead, we can shift to a healthier conversation about awareness in migraine management by learning to recognize prodrome symptoms and early signs of a migraine attack. This puts the focus on a deeper, more personalized understanding of each individual’s own unique experience with migraine. “I think making that shift is a little bit freeing and allows us to separate ourselves from migraine,” says Dr. Halker Singh. “My personal relationship with my migraine changes a little bit—I can separate from my own guilt and say, ‘OK, this is happening, what can I do about it?’” This kind of shift enables someone with migraine to focus more on self-care and addressing what their body needs in the moment during an attack.

New research reveals that 82% of suspected migraine triggers may be false. Learn how science is challenging traditional beliefs about migrai

Your diet can sometimes impact your migraine. Learn which foods are suspected triggers and how to adjust what you eat to help prevent or rel

One study compared headache activity between two groups of people living with migraine while they followed different diets. One diet eliminated foods commonly thought to trigger migraine attacks, and the other diet required patients to eat those same foods. Interestingly, headache frequency improved on both diets. This suggests that particular foods are not likely to trigger an attack, but rather that following a consistent, healthy diet may itself be therapeutic. In other words, feeling that you have control over your headaches may improve your headache symptoms. It also suggests that no single food is a trigger for all people living with migraine.

shamebats

There's lots of people in the tags going well my dad's uncles grandma cut X out of her diet & it cured her migraines.

If you're a chronic migraine haver please please learn to ignore all of that. There's always going to be people claiming that doing keto/paleo/gluten-free or cutting out seed oils/sugar/MSG and taking 15 different supplements cured their chronic illness and migraine is much the same. I'm not saying they're lying, they can absolutely believe that's what happened but it doesn't mean any of that is going to work for you nor do you have to try it.

shamebats

I had some of my worst most painful headaches while on strong painkillers, at the hospital, eating only bland low sodium vegan hospital food and getting fluids straight into my veins because apparently, the stress of surgery & recovery made my migraine disorder worse. Despite me being on Emgality. That's just what being chronically ill is like sometimes, there's not much you can do. Some of us can't self-optimize ourselves out of it, despite what every armchair neurologist & dietitian seems to think.

shamebats

Sometimes the stress of constant headaches & migraines is what's causing your migraines because it's an evil disorder.

#undescribed

I meditate and pray to a different god every time I get a longer medical scan that makes me stay still and it's been nice

#bunny talk

First successful trimming of my own dead ends!!

Haven't historically taken care of my hair for many reasons and I still don't but I broke the task up over many days doing different parts of my mohawk at a time

Finished off with my crown area a few days ago :) hair feels a lot better to run my fingers through now, I'm excited to see how it feels next time I can wash it!

#bunny talk #haven't showered since the hospital #yes it's causing health issues #yes this is why I need to get into supported housing

itastelikesand

emortal-l-deactivated20250308

[ID: a screenshot of a comic speech bubble. The black text in it reads "No matter how open-minded, socially conscious, anti-racist I think I am, I still have old learned hidden biases that I need to examine. It is my responsibility to check myself daily for my stereotypes, prejudices and, ultimately, discrimination." /ID end]

anarchistmemedistro

pupucino

antiracism is a constant process. i was raised in a racist village and it's not easy to get rid of it. i moved away over 10 years ago but those ideas are still haunting me.

genderkoolaid

also keep in mind that shame + guilt are not conducive to growing as a person. when it comes to "checking yourself" it should be a non-judgemental process. it's not about flagellating yourself for every bad thought or trying to purify your mind of all corruption. it's only when acknowledging your own racist thoughts doesn't fill you with dread that you can really progress past the white guilt of it all.

radical self-acceptance & genuine self-critique are not opposites. they need each other. do not let obsessive-compulsive behaviors colonize your desire to grow as a person.

No farmers market haul today, too fatigued for it 😔

Taking a quiet afternoon. I think my nerve blocks are not working (?) this time? Any pressure on the back of my head makes my occipital lobes Throb which is bad! That! Is what they usually feel like the week or two leading up to my nerve blocks when the blocks are at their weakest. It's only been like two weeks!

#bunny talk #I had a nightmare about the pain!#despite! my anti nightmare meds!#what the hell!#as in the nightmare was influenced by having pain in that area of my skull

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nostalgia-is-a-bitch-ah

A brief guide on when it's okay to touch someone's mobility aid:

"When am I allowed to touch someone's mobility aid?" -> you are allowed if you have the owner's full consent, i.e. if they need it and it's far from reach or cannot grab it themselves and ask you specifically to grab it for them

"Can I take someone's mobility aid for a brief joke?" -> no, you can't

"Can I hide someone's mobility aid as a prank?" -> you absolutely cannot

"Even of they're my best friend/partner/coworker/relative?" -> yeah im (not) sorry you still need consent

"I did it before and my friend/partner/relative/coworker didn't say anything!" -> probably because they're so used to this kind of microaggressions they rather spend their energy on something else, this kind of reaction does not make your action okay. Silence does not replace consent.

(This includes ableds using disabled parking spaces and bathrooms and ableds petting service dogs when they shouldn't)

What could have been really bad turned out really good :)

Thank you stranger with a cool shirt and amazing AAC etiquette idk what I'd do without you (yes I do I'd still be stranded on the sidewalk because I can't do all the "verbal" prompts the AI for the para transit service to get to the main phone menu (ableism))

#bunny talk #they probably use Tumblr from the looks of them #hope their day goes well

wizardarchetypes

it's also so funny (in that it's not funny at all) the way everyone becomes Number One Allergy Advocates when a service dog enters the room. Ableist people see a service dog and suddenly they're concerned: What if someone here is allergic? Why should the needs of a service dog handler be prioritized over the needs of others?

But if you tried to do something like enforce bans on perfumes and peanuts in public spaces because of common allergies, those are the same people who would say the world can't be catered to your needs.

covid-safer-hotties

#us pol #I feel the need to emphasize how hard this is to get #every stakeholder who knows my living situation agrees I need this #and agrees that if I got it I wouldn't need to move in to the residential program I need to #despite that and despite my support needs #despite repeatedly ending up in the ER in ways I wouldn't if I had this in home care #I still do not qualify by their rules #please know that people who are on record as fall risks #who repeatedly end up in the ER due to failure to do I/bADLs #do not qualify #and consider the people who do #and consider what even a reduction in support will do for them

No gods

Hamburger breakfast before OT

#bunny talk

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Gross migraine description

BELGH I feel like my occipital loves are rattling around my skill and against my teeth !!!

#bunny talk #yes it'll get better if I put down my phone #but I'm very very stuck

WOW. Okay. Extremely lucky dog alert.

Got approved for community based residential housing!

This means that I'll be living in an apartment building with staff also in the building who can help me make sure I take my meds and shower and stuff.

Down side is. I qualify for the long term program and there's nothing wrong with that except the average person there is 30+ years older and in the skills based program it's closer to my age range. Plus indefinite is dormitory style while skills based is apartment style.

I have a lot of conflicting feelings about it. But. It's good because I know I need it. And my support team agrees it would be good for me. So. We'll see?

#bunny talk #for those who are unaware also #my fursona is a rabbit #I am a dog #hope this clears things up

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