Wednesday, May 25, 2011

It's a EDS Zebra Sleep-Over Party!

Once upon a time, princesses from the Ontario EDS posse got together for a sleep-over party. It was their girls night in, since going to the ball was not something they could do anymore. That's okay, because princesses can party like it's nobody's business in their own EDSy way.

Our wonderful hostess princess Chuckles decorated the ballroom with flowers, balloons, a whole bunch of disco-balls and accessories for everyone. It was also the night of the supposed "rapture", so the princesses wanted to make sure their fate was sealed.

She also made grab-bags filled with the perfect items for a zebra princesses spa.

The princesses were served the most delectable gluten-free cupcakes, they all had at least three.

Candy was also on the menu, commonly known as princess fuel.

There was talk of bacon flavored cupcakes and lip-gloss, all essential in a princesses day.

In a few weeks, these princesses will be going to Nakki's orthotist for a consult and casting to get some glass-slippers for Chuckles. Everyone else in the kingdom calls them AFO's. They aware that princess Nakki knows her stuff and won't take any crap. Hopefully, it will make finding those slippers much easier for princess Chuckles. Otherwise, they're going to have to deal with the wrath of princess Nakki and it's not pretty !!!

In the land of Baltimore last summer, the princesses were introduced to the Apples to Apples game. It was very popular among the other zebra royalty.

Guess which princess came out of nowhere and beat everyone. She's really a ninja in disguise.

Tiara's are a MUST at royal balls such as these.

The term "night out" is used loosely among these princesses. A night out to us, is a night out of bed and somewhere else besides the couch. (Read the label on the bottle)

Being a princess is hard, it takes some major dedication and team work to polish off all of those Jello-shots, there were a ton.

Princess Nakki met Princess Smiles last year after they both had appointments at the royal hospital. These princesses don't need much of anything in order to be comfortable, just a floor. They have laid down pretty much everywhere, including the time they went to see the Dalai Lama. When they were in the land of Baltimore for the EDNF conference, the princesses we so excited to see lots of other bendy friends laying on the floor. Cause' that's how we roll!

Bendy princesses firmly believe that hysterical laughter can fix anything, or at least make pain more manageable.

Then it was time to play a game called: Is This Normal?!
Princesses Nakki and Chuckles are definitely royalty as their feet were starting to turn a nice shade of purple. Blood pooling is awesome!!

Some of us lived off of cupcakes the entire time. This princess couldn't get enough of the strawberry icing, and thought it would be even better with bacon.

She wanted to fill the cupcake bling with bacon grease so it could be lip-gloss.

No longer a princess, but instead the Queen of Bacon!!

I constantly asked how I manage to stay positive and laugh at pretty much everything, when stuck in a body that is falling apart. Bendy friends are instrumental in keeping each other from going insane and giving up hope. There are always bendy friends to talk to at stupid o'clock in the morning because none of us really sleep. Going to bendy posse events, has got to be one of the best things we can do for ourselves. We don't have to try to pretend everything is sunshine and lollipops,we don't have to shield people from some of the really ugly stuff EDS can do, and we don't have to stand or sit in a chair. Being with bendy friends is the one time where we feel completely understood and are accepted as a whole package without any judgment,comments or criticism of how we're choosing to live. Bendy friends need each other because otherwise, we'd be totally lost and very grumpy. Not to mention being in the hospital a lot more. We essentially rely on each other to get info and advise so we can advocate, when nobody else knows what to do with us.

I think everyone in the Ontario bendy posse would want the same for other bendy's out there. Please go out and start your own bendy posse and get together regularly. Having support like this is priceless. It's like the conferences but smaller, a lot less overwhelming and more fun. Alcohol is also much more affordable, since it doesn't need to be purchased from the posh bar at the hotel. I don't think the posh bar serves Jello-shots either...

If this post doesn't make sense right now, it's because dysautonomia wanted in on the party and I'm super brian-foggy.

"We are all a little weird and life's a little weird, and when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual and call it love."
(Dr. Seuss)

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