disabled-is-not-a-dirty-word

[disabled-is-not-a-dirty-word]

[disabled-is-not-a-dirty-word]

hii it's been a bit since i've seen a post from you, i just hope you're well. love your blog :]

Thanks for checking in! We've finally been able to move into our house, so I've been super busy with moving and just generally caring for myself and my home.

I've had a few new health issues pop up over the last year, but I haven't had the energy to pester my current doctors / find new doctors to deal with them. For example, I got a referral to opthamology from my PCP months ago, and I still haven't gotten to see anyone because of insurance company bs.

It's so easy to tell people to "see a doctor" when they are having an issue, but the reality is that if it's anything beyond what a PCP can recognize and handle, the process of getting treatment is going to be multiple complicated steps that would be hard enough to juggle if you weren't already struggling. It doesn't help that doctors' fragile egos can't handle a patient who knows more about their own condition (that they live with!) than they do.

I have a bit of a mandatory break this weekend, so I might schedule some posts then!

[disabled-is-not-a-dirty-word]

Can we erase the idea that low-wage workers being visibly human on the clock is "unprofessional." It does not hurt customers to see cashiers drinking from water bottles or sitting on chairs. But water deprivation and forced standing are both established forms of torture. Hope this helps 😘

[disabled-is-not-a-dirty-word]

i find it hard talking to abled people because so many of them can’t comprehend not having the energy to do the dishes or brush your teeth

[disabled-is-not-a-dirty-word]

heyy guys could we please not use alt text for funny extra comments. grits teeth

[disabled-is-not-a-dirty-word]

Disability acceptance ≠ forgetting being disabled can suck btw.

[disabled-is-not-a-dirty-word]

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

[disabled-is-not-a-dirty-word]

POTSie poll because I'm curious, but 21+ please because heart rates are often higher for people younger than that!

[disabled-is-not-a-dirty-word]

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.

[disabled-is-not-a-dirty-word]

[ID: A screenshot of a tweet that reads

" 'hey, I would like to buy a candy bar with my membership card.'

'Sure thing. that will be $345'

'WTF?! $345?!!!!'

'Well, without the card it's $5,450 dollars.'

'Oh... that's not bad I guess.'

^ That's the American Healthcare system." /End ID]

[disabled-is-not-a-dirty-word]

If you're a disabled young person, you've most likely been hit with the "pfft you think you're in pain now? Just wait til you're my age" bullshit from older people at least once. Everyone talks about how invalidating it is

But I haven't seen anybody mention how it's terrifying, too. Yes, I know health deteriorates with age. I know that old age is a disability unto itself. I know that the healthiest person alive will start getting aches and pains past the age of 40 and may even need mobility aids

I know all this stuff. And it always makes me think "yeah, if I can't walk without joint pain even while using mobility aids AT AGE 21, how painful will life be for me at the age where it gets painful for everyone?"

And it's hard not to feel like I'm doomed, y'know? Where most people get a period of health that they wish they appreciated more when they start to lose it, my starting point was a body that doesn't work properly and it's only gonna get worse from there. It's worse every fucking year.

TLDR stop telling disabled young people that their pain will only get worse to the point of being unimaginable as they age, WE FUCKING KNOW

[disabled-is-not-a-dirty-word]

i get happy whenever i see posts from u :>

So glad to hear that! I know I don't post as much at the moment (work, wedding, and moving houses are all going on at once), but I hope to be more active again in the coming months.

I've made a lot of strides recently in the non-profit that I work for. I am itching to share details, but I fear it would allow people to easily identify me IRL. So please settle for knowing that I am working directly with a large organization to make changes in accessibility for young people in my community and I am very happy to be doing it.

[disabled-is-not-a-dirty-word]

[disabled-is-not-a-dirty-word]

It's funny having a very high tolerance for pain but a very low tolerance for other forms of discomfort. Like yea tattoos piercings cramps shots cuts bruises whatever thats nothing. But I better not get nauseous or hear a loud sound. Or I'll die

[disabled-is-not-a-dirty-word]

"Disabled people can do everything abled people can!1!1!!" I'm gonna have to ask you what you think disabled means

[disabled-is-not-a-dirty-word]

23, 33, and 35 for disability asks ? :3

23. Do you have any tricks for living with your specific ability/symptoms?

I have several!

Hygiene Tips: A shower chair is a must for POTS. Lower the temperature of your showers too, if you can stand it. I highly recommend getting a handheld shower head with a button on it to pause the water flow. I find that I can tolerate showers with much warmer water since I started turning the water off when I'm not actively using it. I also recommend putting your head down to rinse your hair. Face wipes and bath wipes are very helpful when you feel gross or stink, but you can't bathe. Using a bidet instead of toilet paper has made the time between showers much less unpleasant for me. Try your best to keep your underwear clean. Change them regularly even if you haven't bathed

Preservation Tips: Don't always work up to your breaking point. There are times when it is necessary, but it isn't ALWAYS necessary, and if you keep pushing, you will push yourself into a flare. Additionally, don't wait until you are already in a bad place to use tools that might help you, like disability aids and medication.

Community Tips: Meet up with IRL disabled people if possible. Having online disabled friends is great, but it isn't always an accurate portrayal of day-to-day life as a disabled person. People come online to share the best and worst moments of their lives, not their mundane experiences. That can be very intimidating. Certain support groups online make it seem like becoming disabled is the end of your life, and it's not! At the same time, it's ALSO not something that you should be constantly fighting against to achieve the same feats as abled people. Living your life to the fullest doesn't mean climbing Mount Everest "in spite of your disability," it means taking care of your mind and body as best you can.

Misc: Cooling products are your best friend!!! Also, firm mattress + tons of pillows for positioning is the best way to sleep with EDS!

33. What is one story related to your illness/disability that you'd like to tell?

I recently had a spine MRI that received such rave reviews as: “Why does it look like that?”, “I've never seen a spine shaped like that before”, “did you break your spine and not notice??” and “what the hell are you even supposed to do about this?” 10/10 would spine again. Also, they didn't find what they were looking for IN SPITE OF HOW WACK MY SPINE LOOKED, so now I have to go for a brain MRI on Saturday 🥲👍

35. How do you find small moments of happiness when you're struggling?

I have to compartmentalize my mind. Of course, there is a part of my brain that is very scared about the new symptoms that I don't have explanations for yet as well as my normal nonsense, but there is also a part that is getting ready for Christmas, and another part that is preparing for my wedding, and another part that is enjoying the work that I do… and all of these things are happening simultaneously. If I let my fear and pain be all that I experience, I would be missing out on so many amazing things!

[disabled-is-not-a-dirty-word]

29 for the chronic illness asks?

29. What is your most positive moment related to your illness/disability?

Meeting my fiance! She said that one of the first things that attracted her to my dating profile was my mobility aids. She had recently been in a relationship with a sporty lesbian and said it was relieving to find someone who wasn't going to force her into doing activities that she couldn't handle. I later found out that she has been volunteering for a local disability advocacy group for many years. I've met so many great people through her, and we've managed to build up an amazing group of friends. We frequently go to the theme parks together, and it's so nice to be with a group where nobody is offended when someone says "I need a break" or "I can't do that."

She's so supportive of me, and it is an honor to now be helping her through her own diagnosis journey!