Maco: cupcakedingus: I really wish I had EDS friends in real life. There... →
I really wish I had EDS friends in real life. There have to be more of my kind in the Washington DC area. We could have sleep overs at my house and lounge around in our pjs all day and make my fiance make us snacks and then when we get super sore we can get in my hot tub or…
You are a SAINT! Any other info you can give me on this would be absolutely amazing.
I learned about the meetups while browsing the EDNF’s message boards.
The unintended consequences of bike lanes
The Boston area is working hard to add bike lanes wherever they can. As a biker, in principle, I like the idea.
But as I’ve watched a busy stretch of road convert from no bike lanes to bike lanes, here’s what I’ve noticed most: more people park illegally. Somehow the bike lane operates as a permission to “temporarily” park at the side of the road. This morning, for example, I had to weave around 5 different illegally (but “temporarily”) parked cars; before the bike lanes were added, I literally never encountered a similarly parked car.
Weaving doesn’t sound terrible, except I worry that drivers are less attentive when there’s a bike lane than when there isn’t one. There’s a subconscious sense of “that’s your space, and here is mine” that I fear makes them less attentive.
Of course, this doesn’t mean cities shouldn’t install bike lanes. But they also need to adjust the rules about temporary parking. And schmucks need to learn that walking an extra half block to get your double tall carmel latte won’t kill you. Indeed, and as an extra bonus, it would make it even less likely to kill me (or a bigger concern, my kids).
Bike lanes should be physically separated from other lanes. There should be a curb there (hell, with bollards!) preventing cars from doing dickish things like that.
Shitty Ehlers Danlos Syndrome Moment, and Finger Splint Rant
When you dislocate a finger trying to open a stubborn jar. I left my jar opener at home, and a queso craving has left my ring finger all out of sorts. Thanks, queso! Your cheesy goodness better be worth the digital agony, dammit.
I don’t have Oval 8s for all my fingers yet, because I wear my Oval 8s on my DIP joints (I have major boutonniere deformity when I apply any pressure to my fingers, not swan neck), and sadly, with size 2 - the smallest size - being on index and ring fingers, my pinkies don’t have a finger splint that is small enough. Fail. And then, size 3, the next largest size, is too big on my middle finger and always slides off. (The difference between the two sizes is massive! You’d think there’d be an intermediate size.) The Oval 8 sizing sucks, y’all. I don’t wear any on my thumb, because I wear a thumb spica splint, which seems to keep my thumb from misbehaving!
I want to try Silver Ring splints because they probably have better sizing, especially for my small fingers, but they are expensive! My hand doctor is looking for a way to get them covered by insurance. I’m so tired of dislocated and subluxed fingers! Opening jars, scrubbing, cutting things with knives, all things that can cause some major finger woes.
Could be prevented with finger splinting on all my fingers, but Oval 8’s sizing sucks donkey balls.
There’s someone (9/9 on Beighton) who makes metal ring splints for waaaay cheaper than the prescription ones http://www.edsringsplints.com/swan-neck-splints.html
Sometimes I forget dislocating things isn’t common for “normal” people so when someone makes a big deal about it I get really confused.
I’m the same way about fainting. I was really confused when I was at a conference and someone fainted, and an ambulance was called. Like “why would you need an ambulance for fainting? Just get up and move on, happens all the time!”
I really wish I had EDS friends in real life. There have to be more of my kind in the Washington DC area. We could have sleep overs at my house and lounge around in our pjs all day and make my fiance make us snacks and then when we get super sore we can get in my hot tub or the pool for strengths!
The DC-area EDS meetup happens quarterly. Next one is June 1 at the Tenleytown Library. And yes, there are TON of us in this area. People keep moving to the DC/Baltimore area to be closer to Francomano.
im-sherlocked-in-my-mindpalace:
socially-awkward-supervillian:
Fun fact: Cheetahs only attack pray that runs
jesus that is good to know.
Yup, that’s the point you just stay still and let it do whatever the fuck it wants that doesn’t involved you getting eaten.
REALLY FUN FACT for big cats cheetahs are fucking docile as shit
my grandfather ran a cheetah sanctuary in south africa and he’d just lie with them and sleep among them and they’d rub against him and chirp at him they’re big fucking babies
Another Fun Fact: Cheetahs are incredibly nervous animals. One of the (many) reason’s they’re going extinct is that cheetahs are so sensitive and nervous, some of them are literally too nervous to breed. Other’s will breed, but stress themselves out so much that they’ll loose their cubs.
So zoo’s with breeding program’s had to figure out how to make Cheetahs comfortable enough to:
A. Get laid and
B. Not spazz themselves into miscarrying.
So what’d they do?
They gave the cheetahs their very own Service Dogs!
The dogs make them feel safe, protected and secure!reblogging for fucking cheetahs with service dogs!
Reblog if you know who Patrick Stewart is
Please, I’m trying to win a bet with my friends
20? I don’t believe it
RE: Success Story
The story was great and I am so, so happy for you! But everyone with EDS has it presented differently and are in different situations. Some people are unable to do PT, physically or situationally. Your story was great in hearing that this worked for you, but I do not think this should be looked at as an inspiration story. It does work as a success story though.
I am happy for you but the way this was written implies that everyone should have the same experience and that is completely false. So definitely congratulations. For others who were offended, it’s okay if this doesn’t work for you. We’re all very different and I hope that too many people weren’t discouraged or angered like the last poster.
I sort of got lucky on finding an exercise that works for my pain (upper back) and I enjoy. I do archery. I’d had this pain for years, and I’m a medieval reenactor, and I picked up archery, and at first I could only pull a child’s bow. I asked what exercises would get me up to using an adult bow, and I was told to do rows. So I did. And then I noticed that after each session of rows or of shooting, I was feeling better than before. Soon, I will have a back yard where I can shoot archery whenever I want, and that will be amazing. Also, I might start being a little more consistent about those bulls eyes (really, I shoot like I bowl: strikes and gutters).
But I’m also lucky in that I’m at the super duper early stages of the switch from “I’m flexible, weee! Look what I can do!” to “goddamnit knee!”, so I actually *can* try to exercise without hurting myself, if I do it right. Some of my other friends that have EDS? I can see why most forms of exercise are not an option. Maybe in the magical someday land where folks with EDS get the correct diagnosis, the first time, caught early, instead of going through wrong diagnosis after wrong diagnosis as it gets worse, exercise would be an option for most of us to stop hurting.
In response to the racist/islamophobic ads that have recently come up;
The MYG of the ICSC presents:
My Jihad Is…
this needs more notes.
I hear you so hard on not snickering at “69”
THANK YOU FOR THIS.
The word Jihad basically means the internal struggle against evil (or the number 69, apparently). It’s NOT a mission to kill christians or white people.
Every faithful Muslim is on a Jihad. It’s about finding the balance between what you want to do and what you know you need to do. It’s good and evil, right and wrong.
Take a history of religion class and you’ll find out that Islam is a beautiful religion.
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