#this is about chronic illness meds

[9ofspades]

It’s disability pride month, and if you are disabled in the U.S. from Long Covid I want you to know that you’re not alone, and you’re valid in whatever you feel. Whether that’s sorrow at your new problems or rage at society for failing you, you are valid, and it is truly messed up that society is continuing to fail you.

[fightthereality]

Hey I know people more eloquent and better suited than me have said this but why the FUCK haven’t we normalized using disability aids yet?

I don’t mean for people who rely on them day to day—though, that too, but it really ought to have its own post—but specifically: people who are otherwise able bodied using disability aids as needed

This is coming from being someone whose body swings wildly from “extremely agile” to “ow my bones and ligaments hurt if I put all my weight on my legs” and as such, I use a cane when my hips are popping out of socket and I know I’m going to have a bad day. otherwise I’m climbing and biking to my hearts content, which makes people suspicious, for lack of a better word, of my cane when I do need it.

And I’m tired of it

Why should I subject myself to even one day of excruciating pain if I have a way to ease it? Just because it’s not a constant doesn’t mean I should just muscle through it and make my body hurt more in the long run, so why do people get so offended by a seemingly able bodied person using a stability device?

I have a friend who, after a series of sports related leg injuries, uses a wheelchair or crutches on occasion to deal with leg spasms. She’s been accosted on several occasions by complete strangers who see her get up from her wheelchair to reach something or to stretch her legs as her doctor directed her. So many people assume she’s lazy or faking because they’ve seen her before without the aids

I don’t know how to succinctly wrap up where I’m going with this but like

Sometimes people have not only invisible but inconsistent disabilities, sometimes people get temporarily injured, etc. I don’t understand why there’s so much stigma behind pain management for people who seem able bodied

And being able bodied is temporary for most people anyway

I dunno

[vicetrevni]

Ok, what the actual fuck is going on?

I just got a letter in the mail today, and it's a supposed 'good faith estimate' on an appointment I haven't even been to yet. And for treatment I haven't even gotten yet either.

It says I supposedly have no insurance and I haven't sent a claim to my insurance for this yet anyways, but I can dispute this claim or pay the $250 in the next 120 days for these 'services'.

I haven't even had the appointment or treatments yet, I have *never* gotten a letter like this my entire life and now suddenly they're saying I have a bill even before the appointment?

Just what the actual fuck?

[lavendarneverlands]

One of my favorite things about chronic illness is not realizing your sick because you just always feel like shit and assume it’s normal 🙃

[vanillabat99]

I am preparing for a Big Trip in a few months, and one of my concerns is navigating airport security as a disabled transgender person. I do not have my name and gender marker legally changed, I am many years into HRT, and to the average person I am visibly transgender but not in any identifiable "direction". I am physically disabled and use mobility aids. I will be flying to America, if that makes any difference.

What should I expect from airport security as a transgender person?

Should I try to present as closely as possible to what my government paperwork says?

What should I expect from airport security if I am getting disability assistance through the airport?

The name printed on my prescriptions is not my legal name, will that be an issue with security?

I will likely be transported in a wheelchair through the airport, what will they do with my walker/other mobility aids?

Will I have to take out any piercings/change to non-metal jewellery beforehand?

I am working with my doctor and my therapist on my other concerns for the trip, but these are things we haven't been able to sort out (or that I simply forgot to ask about at my last appointment). However, any additional advice and information is greatly appreciated!! I want to be as prepared as possible and I am determined to make this trip happen :3

[kirby-the-gorb]

[rosesandthorns44]

Idiopathic Hypersomnia Life Hacks I Am Currently Field Testing:

Putting my shoes on and not taking them off so I can't get back in bed or lie down on the couch. (Roommate's genius suggestion I wish I had thought of. I don't like wearing my street shoes in the home, so perhaps I need separate indoor anti-sleepytime shoes. I'm not a crocs kind of gal, but perhaps just for at home)

Washing my bedding on my days off from work so my blankets cannot beckon me with their siren song (also, I get horrible night sweats. I wake up DRENCHED, so my bedding needs the extra washing anyway. Anyone else with IH or Narcolepsy have this???)

Not sitting down to watch TV or play video games unless I have finished my to-do list first.

Post-it notes everywhere. For everything. I wouldn't even remember to brush my own teeth if I hadn't put a post-it note on my bathroom mirror

Other Hypersomniacs of any breed, please feel free to add your tips and tricks.

[trans-axolotl]

so had my neurology appointment today and they want me to admit to the hospital for epilepsy monitoring 👎i'm calling to schedule it in a couple minutes and i am just. aaaa. they said i'll be in for 3-5 days and like. as much as i know the fact that Medical admission to a hospital is so different than psych admission and that I'll be able to have my phone and stuff like that i'm still sort of panicking. the thought of having to spend time in the hospital like that is like. v scary to me.

[aintgonnatakethis]

whenever i see the view of 'always be 100% honest with the medical professionals providing you with healthcare' i just... how much privilege do you have to have to not see the pitfalls with that statement?

i understand 'always tell first responders what drugs you've taken'. but when it comes down to trans healthcare or people who're disabled or have "scary" mental health conditions. do you really think being honest the entire time is safe?

[vampiresblog]

this time of year is so exhausting. the pressure of needing to make all of my christmas presents within the next 2 weeks (I'm short on money for gifts so I decided to make art for family and friends this year) would be enough on its own to make me crumble, but on top of that, the weather is so intense its making my pain flare up and I can't afford to be running the air conditioning all the time. I feel like I'm flaring up badly again because I keep ignoring my body and pushing past the signs that I need to rest because I can't afford to! I might just pass out on december 22nd and sleep until the new year. I want to skip it all. the clock is going too fast for me- apparently thats just what happens as you get older. but its not supposed to be this fast. my clock is going at double the speed of every able bodied persons because I get maybe 5 hours of the day where I can actually do things when everyone else gets 12 or more. I'm trying my hardest and am still falling behind. I just can't rest until everything is ready. I don't want to be a dissapointing friend or brother or son because I couldn't do anything for anyone this christmas

[greencloakedfae]

Its the final few weeks of uni and i have a fuck ton to do and im already sick of it. I just wanna write nellfia fanfic and sew my stupid cosplay shit.

[sonofsin]

my doctor is putting me on another medication. I'm taking 6 different meds now, and I still have a bunch of shit that probably also needs medication that I haven't brought up yet. my pain is still unmanaged. my mental health is largely still unmanaged. I'm not looking forward to how many pills I might be taking in a year or two for now

[salt-baby]

how concerning is it that your doctor responds to your MyChart message in 30 minutes and has you in for an office visit two hours later? asking for a friend

[queenofbaws]

i know this has been said before but MAN. it really is astounding how many times i, a person with painfully-tired-all-the-time syndrome disorder disease, think to myself:

(≖_≖) ...why in god's name am i so painfully tired today???

like girl please. we know this one. no need to pull out the conspiracy board and string, i think we've solved this particular riddle.

[sparkylurkdragon]

Man.

I've just been having A Month this August.

Hopefully September will be better.

[s0fter-sin]

is there an actual medical reason why my body just doesn’t respond to medication and if there is please tell me it can be fixed bc this some bullshit