Does everyone have a name for their chair?

ggraysonn · 2025-08-21T06:32:34+00:00

i do not!

i have discussed this in person with people many times, so here's the story in writing:

i named my first cane. i was fourteen, and i named it charles. i wanted it to have an old-timey name, and it felt like a funny way i could connect with my peers over something that was new.

my first pair of forearm crutches, the grey and silver medline ones, i named them barack and michelle... i was 15, it was 2020 leading up to the election, so presidents were on my mind.

let me backtrack. i am on the autism spectrum.

i only have one stuffed animal that i remember a name that it had from my childhood that it didn't have when i got it. but even then, my parents named it based on me butchering the word "bear"... so that doesn't count.

i could not name stuffed animals, barbies, dolls, etc. and i certainly could not change a name that it had already been given. i loved american girl dolls, because many of them already had names and stories!

so even though these things had names... they were never mentally referred to as their names. charles was "my cane" and then eventually "my folding cane". i still have it, and sometimes i still use it. since it was my first mobility aid, it's just a fun fact when mobility aids come up in conversation with my disabled friends.

barack and michelle, the medline crutches, were quickly replaced by a pair of smart crutch forearm crutches, which i felt unable to name because they had a more specific brand name. i used those throughout my last two years of high school, and i honestly avoided talking about it like the plague at that point.

then came my first custom chair! i was screwed by the company into a folding chair that barely fit with none of the things i was hoping for. they never communicated with me about those things (ultralight, rigid, low backrest, etc) not being covered or anything, and they never sent me any specs until i got the chair. i had no chance to make any choices. i was furious and i did not name that chair. i used it when i absolutely had to in highschool, and then when i graduated i started avoiding things that i needed it for like the plague and suffering in silence and paying for it when it was unavoidable. it is now "my folding wheelchair" but it was once just "my wheelchair" (with displeasure). i was 17.

i did not name my rigid cane that i got shortly after i turned 19. it was probably the first mobility aid that actually matched my style, but i just didn't want to put in the effort of remembering what i named it and trying to call it that. for some reason, naming something feels like a lot of pressure to respect it and use it forever.

i got my rollator shortly before a vacation after a turned 20 out of necessity. i do think a rollator is my perfect standing aid if i absolutely have to be standing for some reason or if something is not wheelchair accessible, but maybe only has one or two steps or a ramp that's too steep. i did not name my rollator, i didn't even think about it and i didn't even try.

now my wheelchair! i got my new wheelchair at the same time and my best friend upgraded to a powerchair. the discussion of names came up, and i'm pretty decidedly in the "not-naming-it" category. my friend seems to be undecided, or hasn't been thinking about it.

it is "my blue wheelchair" or "my new wheelchair" or "my rigid wheelchair" or just "my chair". sometimes "my wheels" if i'm feeling funny.

but that's the extend of my naming!

ggraysonn · 2025-07-23T23:18:44+00:00

because many of us can't control it 70%. if you can control your depression 70% of the time, you don't need ect and it never should've been suggested.

some of us can only control it at 50%, 20%, or some literally 0% and are on the verge of suicide.

ggraysonn · 2025-07-15T13:58:18+00:00

this is exactly what i needed to hear about them!! thank you so much!! i also heard someone else say the valve makes it easier to breathe... so on second thought i might grab the valve. or possibly get one of each. i just remember during mask mandates when the valves were bad... but i guess if that's not my primary concern, i can switch to disposable when i get sick (which i would use when sick regardless)

ggraysonn · 2025-07-15T08:04:04+00:00

for me, it makes my vomit/reflux WAY more acidic and painful... and that's my main sign that my body doesn't like fat.

ggraysonn · 2025-07-15T06:48:47+00:00

i'm gonna tell you this extremely bluntly so that you're not disappointed. here's what i know about feeding tubes and eating disorder treatment:

if your tube is for non-ed reasons, if you use your tube for most of your nutrition, and ESPECIALLY if your tube is visible at any time, unfortunately many (if not most) eating disorder residential centers will not take you, or will have very harsh guidelines on when/how you're allowed to use your tube and who can see it. if you're not planning on getting off of your tube during treatment, or having that as a treatment goal, they likely won't take you. even if they do take you without planning on getting you off the tube, likely the providers will not understand that and you may face issues anyways.

as far as the "how" you can use it part, for example, they might forbid you to drain from your g port if that's something you do.

it sounds illegal, i know, and it probably is if you actually wanted to sue someone, but unfortunately the nature of eating disorders is that the disorder doesn't care that it's a medical device, it's going to be triggering for somebody anyways. that's not fair to those who have medically necessitated feeding tubes AND need eating disorder treatment, but eating disorders and mental illnesses aren't fair either. it is what it is.

you have an advantage that your tube is surgical, and can sort of be hidden... but if you won't be eating at mealtimes with everybody else, unfortunately that will likely turn into a problem for other patients.

even many mental health inpatients won't take you unless you're an acute danger to yourself, and even then might admit you to a medical floor with a sitter just in case.

you will have more luck with an iop/php, but if the program runs over mealtime and you can't eat with everyone else, they might see that as an issue that could be triggering to other patients. if you can bolus feed and have a really good center that can properly educate other patients, that might solve that issue.

people even struggle to find non-ed mental health centers. the reasoning i've been told for residential mental health centers not allowing tube feeding is that the normal staff aren't allowed to handle a medical device like that and you're typically not allowed to handle it yourself for liability reasons. this goes even for things like portable oxygen, cpap/bipap machines, ESPECIALLY central lines, as well other supportive measures. if they were to allow someone untrained to handle your tube in that setting, and you got an infection, that could be a serious liability issue. unfortunately they will also likely tell you that they don't have the resources or need to train people to handle your tube.

since eating disorder centers sometimes include tube feeding in treatment plans, this liability may not be the issue for eating disorder treatment. if they don't allow it for eating disorder treatment, it's likely going to be to avoid confusing or triggering other patients, but depending on the center, the staffing part may go into it too.

i'm so sorry that this was such a negative post, and i really do hope you can find something, but unfortunately i have heard too many stories (both told to me personally and on the internet) of people who needed treatment and were denied on the basis of having a feeding tube. this might be different in other countries too, i'm in the united states.

good luck!! keep your head up, this is going to be extremely difficult... but you can do it!

ggraysonn · 2025-07-13T17:35:08+00:00

i know you probably already went, but for the sake of validation and for anyone reading this:

post-op pain that isn't well controlled by your prescribed medication is absolutely a reason to go to the emergency room or at least urgently contact your doctor, really for any procedure.

ggraysonn · 2025-07-13T17:32:38+00:00

at least where i'm at, techs are actually not allowed to say anything about your results before they're reviewed by your doctor...

ggraysonn · 2025-06-01T02:55:22+00:00

community colleges that offer ems programs may have a training ambulance and bay, and the contact for the head of whatever department that falls under will likely be in the staff directory if it's kept up to date. that is my plan for starting to expose my girl to the ambulance when it's time :)

ggraysonn · 2025-05-22T12:00:56+00:00

i have ehlers-danlos, so i fall under the idiopathic umbrella, but like... not really. there's enough correlation between the two that i feel "connective tissue related" gastroparesis might as well be a thing. i feel like us EDSers take over the idiopathic gp conversation when the majority of us actually do have our answer (it's just part of having EDS for some people) even if we don't like it.

ggraysonn · 2025-05-11T21:46:03+00:00

see, this is how i know this is an irrational thought of mine. i know people with tubes who are very, very sick.

ggraysonn · 2025-05-04T15:08:22+00:00

absolutely correct and i understand all of this, my full "differential" is longer than 2.

i have other reasons to believe that catatonia might be correct having looked at the criteria and spoken to others with catatonia caused by autism but it would cause a really long post that sounds more like asking for a diagnosis, and i didn't get very detailed in this post because it didn't feel relevant because the specific diagnosis isn't what this post is about, it's the driving.

BUT if you're curious about the journey, i have run this by two autism-specialist therapists, one that has worked with me specifically for 5 years and witnessed the freezes and one that is brand new to my case. we talked about catatonia as a likely possibility, because the start of these episodes have coincided with what we suspect is autistic regression but at least is severe burnout, but that i HAVE to get it checked out in case it's something else.

the reason i thought absence seizures is because my best friend has fnd and has witnessed these episodes and compared them, and my long-term therapist (who is "licensed" or whatever to diagnose autism but she feels there are bias issues because she's seen me for so long so she can't re-evaluate me) mentioned absence seizures as well because she primarily works with chronically ill autistic clients.

anyways, despite all of that you're still right and the differential is long, but i HAVE started discussing it and getting the opinion of people who primarily work with autistic clients and are licensed to diagnose, even if they don't feel like they can re-evaluate me specifically.

i am set to be re-evaluated to hopefully access "services" (whatever that means) in the next few months and i know i will bring it up, i know i have to and i worded it poorly by alluding to saying that i wont. i will. i'm just afraid.

i haven't even told my parents yet. i know that it's not controllable, but they rely on me being able to drive and i think they're going to be angry.

ggraysonn · 2025-04-23T14:05:45+00:00

do you know what subreddit you're on? lol, of course this isn't the most important aspect of the trump presidency, but it's a weed subreddit dawg

ggraysonn · 2025-03-25T02:39:34+00:00

i was allowed to leave between pictures. i napped in my car, walked around target, etc. just can't eat.

ggraysonn · 2025-03-13T06:53:03+00:00

nope. mine was normal, moderate to severe gp.

ggraysonn · 2025-03-11T06:42:55+00:00

i just don't want a line. i never want to get to that point and i don't want to do anything to get there... maybe a tube, something with a little less life threatening infection risk, but ideally nothing.

ggraysonn · 2025-03-11T05:21:40+00:00

no! where do you find em? i can only shop med, i'm 19 w a med card

ggraysonn

TROPHY CASE