It is pain med refill day, motherfuckers. I’m so fucking glad. I really like my doctor, she’s been very cool. We’re gonna up the more-phine and take the percocet down. I wish/hope/pray/sacrifice small animals nobody likes that every one of my fellow EDSers could find a doctor who doesn’t suck, and that all of of us could have decent health care.
On a side note, I’m out 120 bucks for my meds, because my insurance won’t cover PAIN MEDICATION so I won’t be getting gas after all.
On another side note, I’m quitting smoking. For real. And I’m not going to tell anyone about it, I’m just going to do it. I’m starting chantix tomorrow and I’m just going to fucking do it. My body is falling apart fast enough without any help, I don’t need that crap.
“You owe the companies nothing. You especially don’t owe them any courtesy. They have re-arranged the world to put themselves in front of you. They never asked for your permission, don’t even start asking for theirs.”—Banksy (via freestatefeminist)
haha “lurching crippled spastic penguin” I’m there! I’ve broken down and started using the store wheelchairs and when people stare well I glare back! It is so lovely. Good Luck!
I know there’s a handful of us out there on tumblr, which is the ONLY place I’ve found any fellow EDSers. It’s nice, in a horrible sort of way. I use the wheelchairs sometimes, but I try not to. Last time I dislocated my knees, the doctor told me I was lucky because I’d walk away from it, but the next time was going to be my last. I try to walk as much as I can because of that. But the shopping cart walker? TOTALLY my friend. <3
Jaysus christ I love this disease. I wake up this morning and try to get out of bed. The second I move my legs it’s like lightning set on fire with napalm applied by screaming saliva monkeys going up my legs. No exaggeration. Ask anyone with EDS. My knees will not bend, my legs will not support my weight. I have to wake up my daughter to have her help me get her brother ready for school. She reminds me that we must go to the store. Can I drive? I can barely walk. I manage to get dressed and by that I mean put on pants and a hoodie and sandals because that’s all I can handle. My knees revolt in sergeant pepper symphony every time I try to move my legs. What did I even do in my sleep to cause this?? I can’t remember doing anything.
Down goes the morphine a bit too early but I have things to do this morning, and I can’t wait. The school does not know about my condition and I’d prefer it stay that way until I have no other choice. I limp in a pattern that can only be described as a lurching crippled spastic penguin from my car to the store, where the shopping cart once again becomes a substitute walker. People stare. I stare back violently.
Fuck you, I have a debilitating disease. Just because you can’t see it doesn’t mean it’s not there. I get my milk and her ovaltine and the three other sundries that we can’t go without and do my special penguin dance back to my car. Happy feet indeed. The soles of my feet hurt like I’ve been stomping on rocks. Was I sleepwalking in the Andes last night?? I decide to splurge my last six dollars on coffee for myself and the daughter since she was good about being substitute mom this morning. I drop her off at school and come home, wondering how anyone lives without narcotics, and then I remember that isn’t a normal monday for everyone.