Im Down When Do We Start

THIS its so important to understand that while yes absolutely we need support and funding for sick kids - these same kids will likely still be sick as young adults and need support then too.

I feel like people forget that pediatric illnesses generally last into adulthood like…childhood cancer survivors often have medical complications for the rest of their (adult) lives. My juvenile arthritis will be around when I’m 75. Crohn’s disease, cystic fibrosis, congenital heart defects - all of these things, when acquired in childhood, have lifelong complications. Childhood diseases aren’t just cute, happy kids smiling from hospital beds. Theyre pain and suffering and learning to live differently forever.

yea..

It’s hard not to feel alienated sometimes by your friends, even if unintentionally, as a physically disabled person.

“Oh, let’s go to this place!”

“How far away is it?”

“It’s only a three-minute walk.”

But you can’t do that three-minute walk. And it’s uncomfortable speaking up that you can’t do that three-minute walk. And maybe you’re well enough that day to push through it, but you pay for it afterwards. The worst part, your friends think they’re being accommodating because it’s such a short walk. However, a short walk to them isn’t a short walk for you. But eventually, you simply start saying no to hangouts because you don’t want to be a burden because you can’t engage in basic activities that are easy for everyone else.

Sometimes you do speak up, and you’ll ask something like, “Can we drive there?” and there’s always pushback. “Oh, it’d take longer to drive there than to walk” or “walking is good for you!” You regret mentioning anything at all; the discomfort and guilt linger.

Structural inaccessibility adds another layer to this problem. You’re forced to say no to countless hangouts that aren’t wheelchair-accessible. Even if you can walk, you might not be able to walk far enough to enjoy the planned outing. People start noticing you always say no, and before long, they stop inviting you at all. Maybe it’s better this way. It still feels lonely.

I PAINTED FOR LIKE 20 MINS TODAY WOOOOO!! first time in over a month

i have so much art i need to get out of my brain its all stuck in there while i cant do any 😭😭😭😭😭

exactly 😭😭 its always like “aw im so sorry i get it ive been through the same” and then ur like ah shit not another one.. :((

it hurts hearing other disabled people talk about medical mistreatment.

like i am partly grateful to not be alone of course, but i really wish it wasnt a common or even standard occurrence.

breaks my heart.

losing yourself in world events is extremely easy right now. reminder that its okay to take a step back and rest. you need to be able to breathe before you can help others to.

im desperate to paint but im away and didn’t bring anyyy

Terrarium Life collection~

I painted these way back during the pandemic (hence the hoard of toilet paper and Switch that I wish I had, but they were all sold out) No pandemic now but the chimney smoke from all the neighbors have made the air unbreathable and I'm stuck inside again 😭 cuddling my dog, drinking tea

tending to my fish tank and my plants

its really confusing when youve had a traumatic childhood, but your adult life has been really traumatic too.

because on the one hand i have so much nostalgia for my childhood and i long for it, but on the other hand it really wasnt that great.. i just had less responsibility for my health.

i feel like im constantly searching for when i felt safe, but im not even sure if there was really a time where i truely felt safe.

i think thats why i love engaging with media from my childhood so much, its what helped me escape as a kid and im still running after that feeling.

okay but why are so many medical professionals focused solely on getting their patients back to their jobs and not actually helping the patient feel better. like you will be literally unable to digest food or eat or do anything and they'll be like "that's not good we gotta get you BACK to WORK!!!!!!!!" and so they drag their heels and take up a bunch of time and give you treatments that don't work or take forever to give you ones that do and when you tell them. hey i still don't feel good the first thing is "BUT YOUR JOB!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"

fuck my stupid job. i'm dying. i'm a person not a walking job. help me. a lot of medical professionals will refuse to do their job and instead lecture you about being unable to go to your job instead. unreal.

hello to my physically disabled friends. if you, like myself, spend a lot of time in bed and stick to one particular spot it might be worthwhile to see if your mattress needs rotating. i got mine shifted and it became immediately obvious that it had developed an indent and wasn't supporting me well. i could feel the difference immediately after lying down