fibromyalgic

[fibromyalgic]

diagnostic criteria. a personal vent piece about growing up physically disabled (& autistic)

[fibromyalgic]

I forgot to update here , but my surgery yesterday went just as we expected ! ! ! I've been dealing with a wicked headache as well as burning pain in my nose , BUT according to the surgeon I should start feeling a lot better by day four ( 4 ) ^_^

[fibromyalgic]

[fibromyalgic]

anyway isn't it awesome when you relax too much and your esophagus collapses in on itself. so you accidentally snore while you're awake

[fibromyalgic]

I also had an appointment at the sleep clinic for my sleep apnea & I'm still kind of emotionally processing that whole thing . So I'll talk about it more in the future , BUT that being said , I'm doing at least 1 sleep study ( the doctor said they might want me back for an in-hospital study ) & then I'll be getting a CPAP as soon as possible ! ☆⌒(ゝ。∂)

[fibromyalgic]

surgery in 11 days . . . blows up

I've had 2 major surgeries before ( osteochondroma removal , inguinal hernia repair ) but I've never had surgery like . in my face . I don't wanna delve into another rant about my nose and how severely affected I've been by medical neglect right now so I'm just gonna leave it at Oggghhh muy complicated emotions .

[fibromyalgic]

so far dental braces have been really easy to adjust to ! they haven't felt tight or made my mouth sore at all , it's just extremely annoying to get food stuck in the wires .

I also had a follow-up appointment at neurology ! another neurologist agrees my spasm attacks suggest FND / FMD , but wants me to undergo more imaging before settling on a diagnosis so 💃

[fibromyalgic]

mimic octopus (thaumoctopus mimicus) | source

[fibromyalgic]

Oh and I am ALSO getting my braces put on tomorrow ! I'm going to get the first bands in alternating pink & blue , but I'm definitely going to play around with matching the bands to my outfits in the future hehe .

I've been terrified of getting braces for a long time due dentophobia & what I was told by my previous dentists , so this is a massive step for me both phobia-wise & health-wise ! I might have to wear them for a bit longer than average because of THIS guy -> ( my connective tissue ) but I don't mind honestly , I think the additional splash of color I can use for coordination is very fun . . . ^_^

[fibromyalgic]

I finally got a date for my surgery ! ! !

I will be having a septoplasty with donor cartilage grafts , submucuous resection of my inferior turbinates , & nasal valve collapse repair with lateral wall implants , on the 23rd of next month ( May ) !

Now I really gotta keep this blog updated haha . It's meant as a journal of sorts for people who might be going through something similar to me , so I'm excited to share the details of my recovery for those like me who felt incredibly alone with their nasal abnormalities . I've heard the recovery from the surgery hellishly rough , & if that's the case for me , then that's absolutely still a journey worth posting . 🧃

[fibromyalgic]

little update since I went to the neurologist yesterday !

went to the ER again the other night so that's fun . I'm okay , I've just suddenly developed near-24/7 jerks making my entire trunk spasm constantly & we can't figure out why 🤙

[fibromyalgic]

the thing about disability is it really does sometimes boil down to "wow i wish i could do that" and then you can't. and it sucks.

[fibromyalgic]

physically disabled people should be allowed to do activities that might cause a flare up or illness without other people acting like the time they need to recover is no longer owed to them.

[fibromyalgic]

went to the ER again the other night so that's fun . I'm okay , I've just suddenly developed near-24/7 jerks making my entire trunk spasm constantly & we can't figure out why 🤙

[fibromyalgic]

the “can you get me xyz accessibility tool please” “nah u dont need that i’ll just help you” type conversation is so frustrating to me

i appreciate that people want to help but i want to be able to do things even when you don’t feel like helping me. i want to be able to do things when you’re not around to help me. by refusing me accessibility aids, you are limiting me in a way i dont want or need to be limited, whether intentionally or not

[fibromyalgic]

medical gaslighting is crazy . imagine telling a 17 yr old that because they've " only " had one ( 1 ) inguinal hernia , not two ( 2 ) , means it doesn't count as an hEDS symptom

[fibromyalgic]

on a more serious note tho. abled people don’t seem to get how Frustrating it is to be in pain all the time.

i mean, obviously nobody wants to feel like shit 24/7, but the fact that ‘resting’ isn’t restful, that no matter what i do it’ll hurt, that even taking five different prescription pain meds multiple times a day will often barely touch the pain i constantly experience.

after a while, it becomes largely background noise unless it’s a particularly bad pain day. but when the distractions go away it just feels like shit. & it is so incredibly frustrating.

i don’t have the spoons but i want to cry because there isn’t a single position i can lay in that will allow me to comfortably fall asleep. i can deal with the pain but my god it is so frustrating that I have to.