When EDS kicks everyone's butts!

If you've been wondering what's been happening in EDS land over here, I have 3 big posts in the works.

*I went to the 2011 EDNF conference with most of our Toronto/Ontario bendy posse. I Had the time of my life, and I think I can speak for a lot of the zebra's who went.
*In the last month, most of our Toronto bendy posse have been on ER runs and in & out of the hospital, myself included. In the last three weeks, three of our bendy posse sista's got an ambulance ride to the ER.



*Our Toronto bendy sista Natalie passed away. She's on the left in this one. We'll all miss her kindness, compassion and those big blue eyes.


I'm so lucky to have bendy friends in my life. We all laugh at the fact that we only met a year ago and for some of us a few months ago, but we already have such a deep connection and dynamic. We each play an important role in our group that enables us to hold each other up, and provides a safe place to land when we fall. We always find a way to make the best of some very hard circumstances and know there's nothing we can't ask of each other.


Even if we ask for help to "clean" a J-tube. In all seriousness, we will leave no stone unturned in a quest to help each other out.


"To my Zebras: it started out as an exchange of information. Doctor talk. OHIP talk. Pain in the $@&! talk.... But... what grew out of it was the deepest of friendships any of us had ever known ♥ "

(Christie)

Staying at Chateau Sinai again

Bleh, I'm at Chateau Sinai for the insane reflux stuff.
It got too crazy for me to handle at home and I couldn't deal with it anymore.
I've got a lot to write about, so an epic post will be coming soon.

In the mean time you can check this out....

"Do you want me to bust you out tomorrow at lunch-time?"

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)

The simple things are really the finer things

Well, I'm still feeling really gross but I'm also finding lots of enjoyment during these really long days. Sounds contradictory doesn't it ?

Guess what? It's not. Here's why:

I've found that getting sick as given me lots of opportunities to learn to enjoy the simple things in life. Like, bare-bones simple sometimes. I've always been someone who enjoyed those simple things, but only in small quantities. I would get bored, antsy then I'd feel powerless. In hindsight, I know exactly why that would happen. It was because I had to face some really hard things and eventually work through them. When I really started to regress over the last couple of years, I had to stop everything I loved. I was someone who was always on the move, and the faster I was going, the better. I didn't have time to be still and quiet, nor did I have any interest in it. To me it was like torture. As my symptoms got crazier, I eventually had no choice but to learn to be still and quiet.

That time was also the peak of the depression fun that we all find ourselves in when we realize that this is it. Life will always be this way. If we were lucky, there might be a few things that we could do again with lots of adaptation and most importantly caution. Our lives would be filled with countless evaluations throughout the day, for us to determine the impact of our every move and the consequences that would follow.

With a lot of work and perseverance, I finally learned how to be still and quiet. I distinctly remember the first time I actually chilled out. I was camping with the guys, after what had been a really bad past couple of months. It was a beautiful, quiet afternoon in the middle of no-where and I went to lay on a rock just beside the lake. I made a conscious effort to focus on breathing and relaxing. After about ten minutes I realized that I was chilling out!!! Then I yelled to the guys that were doing their own thing, "Hey guys, I just chilled out!!". I can't say I was relaxed after that, because holy crap...I chilled out. From then on, I knew it was possible and I wanted more.

Now a few years later, and with a lot of practice I can be still and quiet almost anytime. For me, habitually taking my mind off of life and EDS for little chunks of time each day has allowed me to retain the little sanity I have left. Maybe I wouldn't say retain, because as life gets crazier I'm more at relaxed and at peace than ever before. So we'll say I'm taking back my sanity and perfecting it. It's also the one thing that helps with pain control when nothing else does. On those days when everything hurts so much that I find myself on the floor, I turn off my brain and focus on breathing. Nothing else. It allows me to get from one moment to the next and to be completely relaxed so I can ride the whole thing out. I could be yelling at the top of my lungs about pain, but for me it's counter-productive. Yelling makes for more muscle tightness, it's loud and makes me,and anyone else around panic. No thanks...

Anyway, this whole being quiet thing has given me so many opportunities to experience the world in a different way. After perfecting this skill over the last year of being sick in bed, I am finally putting it into real practice. I can now experience things simply, and there's nothing like it.

I've been reading my books for school in a hammock in the sun. I'm surrounded by flowers that smell wonderful, and lots of greenery. I've been laying on the grass, looking up at the sky thinking about nothing, sweet nothing. On windy days I'll go for walks and spread my arms out so I can feel the wind on my whole body. Sometimes after work I'll walk down to the beach and hang out there for a while. I'll play in the sand, wade in the water and soak up the sun. Tonight it started raining and no, I didn't go inside. Instead, I took off my sandals and AFOs' and got to re-experience the feeling of wet leaves and grass under my feet. Then I went back to the hammock and just lay in the rain. When I'm outside doing anything, that's when I truly feel grounded and connected. Most of the time the thoughts of EDS and what it's doing to me, melt away and I get some much needed respite.

Since feeling a lot better (not right now, but on the whole), I've been able to participate in life again. I've been able to make plans and keep them for the most part. It doesn't mean that I'm doing anything crazy, but I'm really enjoying the time with my friends doing nothing in particular. Just hanging out, and enjoying each others company. Now that it's been getting warmer, we've been spending more time outside and it's been awesome. Everyone always asks what I've been up to or busy with.Other than paperwork and EDS fun stuff, I just been enjoying life. Most importantly the simple things,that are really the finer things in life, and that's what makes me happy.

This week two of our bendy's friends have gone to meet their maker. Zak and Kim won't ever get to enjoy the simple things anymore. They left this earth to soon, and none of us know when it will be our time (whatever you believe in).If you're not already doing it, make it a habit to find the simple and fine things in life, and enjoy them. It might take a lot of practice, but it's totally worth it. If I can weather the storms that life unleashes, so can anyone. You may also develop a bit of an "I don't care" attitude, and that's awesome. Because at the end of the day, does it really matter if we broke a glass, or ran out of peanut-butter or forgot to take out the garbage? Probably not... Tomorrow is a new day, and it's never a day to be wasted.



I found a backpack that is perfect for the Joey-pump, and so much better than the one that is made for the pump. It's also about $60 cheaper, and looks far more cool. I'm a bit of a MEC whore, they always have what I'm looking for and it lasts forever. http://www.mec.ca/Products/product_detail.jsp?PRODUCT%3C%3Eprd_id=845524442635436&FOLDER%3C%3Efolder_id=2534374302889522


And..............I found some sandals to cover my AFO's. From May until mid-September the man shoes are gone. It only took 3 attempts to find these and I love the fact that they're orange.


Some of our bendy posse got together. It was a beautiful sunny day, where we spent it mostly outside. First we stopped for lunch where we started with some drinks. Jerome had vodka shot, and an audience. I guess people aren't used to seeing a girl do shots through a feeding tube. They wanted me to do it again, because they thought the whole thing was hilarious, so I happily complied. Insta-drunk again, don't mind if I do.


Then we stopped for some desserts in the sun.



Later we went on our way for more food. We stuffed ourselves silly and had a fantastic time.


This is where I'm spending a lot of my time. I don't know how I ever lived without a hammock. Jerome was being fed with gravity, I just clipped the fluids bag on the top of the hammock and kicked it old school. Nothing better than fluids, brain-food and being outside. Yes, PenAgain makes hi-lighters.

This is what I see when I look up, no boring ceiling to stare at.


Nothing better than unwinding at the beach after work.


Happiest feet on the face of the planet.


Last year's birthday was spent in bed with a subluxed neck and the beginning of life with dysautonomia. It was also supposed to be my last day at the job I loved thanks to EDS. I missed both, but luckily this year I got a re-do! A b-day celebration with some of my work friends at an Ethiopian restaurant. I'm a lucky girl.

"Celebrate we will, because life is short but sweet for certain"
(Dave Matthews)

When OT's do the impossible, the good kind.

In between the gong-show that has been life with EDS, there have been some pretty incredible victories of sorts.

After making all the adaptive goodness for my hands, my OT wanted to know what else we could come up with. The one thing that is almost impossible for an EDSer to get is a neck-brace that fits properly, and doesn't make for more TMJ issues. So, we went for it.

I realize that I walk the line of being out of mostly everyone's scope of practice. I'm their first patient with EDS, and when you present someone with a disorder that is complicated and wildly unpredictable it's a huge challenge. Instead of us who were diagnosed and have had time to research and experience it, our doctors, specialists and everyone else gets the EDS bomb-shell dropped on their laps. Aren't they lucky?

We had to take a good look at the how's and why's of using a brace instead of surgery right now, and all of the factors that would need to be taken into consideration.

After a few attempts and many adjustments we figured it out. We still have a little bit of tweaking to do, but my new neck is incredible. It wasn't much help that I haven't been feeling the greatest with the dysautonomia, so I had some major brain-fog and a killer headache. I've been pretty hypo-sensitive with some kinds of pain lately, which has resulted in a lack of hunger and some burns. I hadn't eaten in about 20 hours, which only contributed to the problem. Luckily, with my fluids concoction the blood-pressure drops,tachycardia and obviously hydration have been okay. My ability to give feedback and carry a fluid conversation without going off into la-la land was a bit hampered. It's better than the times when I can't even finish a thought.

If it weren't for the brilliance of the OT's, a neck brace that fit ME wouldn't have been possible. The fact that my head can be supported without some major TMJ pain is incredible. EDSer's have to choose if we want to keep a killer headache/migraine or put up with TMJ pain/headache. Either way, there's still pain. Going without a brace and laying in bed is quite often what we end up doing. Today,we found a way around all of that. Today, my quality of life improved and I have one less big problem to worry about. I can use that energy towards something else that will push me further in the direction I want to go, so I can contribute to the world.

I think since it's such a huge piece of adaptive goodness, it needs some kind of a name. I don't want it to be totally off the wall (as if Jerome isn't...) but something that's easy to remember. Any suggestions are welcomed.

Without further adieu, here is my most brilliant piece of adaptive goodness that is currently nameless. Don't worry I'll also be finding a way to bling it up too!


It doesn't mess with my jaw, supports my head and neck, and is COMFORTABLE. I can also eat with it on.

I will take arm-pit rash any-day over more killer headache/TMJ pain.


Yep, there's a little pillow at the back. It was the only way we could get it to fit without restricting my airway and still be comfortable. The little pillow is fastened on with Velcro and is just batting with a sleeve. The other pro is that I can take out the pillow and throw an ice-pack in there when needed.



This is what happens when it's a beautiful sunny day, and studying isn't all that exciting.

Sunshine and flowers make any day better.


My poor OT is probably going to be harassed from bendy's looking for some adaptive head/neck goodness. There will be line-ups outside her door. That's what happens when you do the impossible.

When the world says "Give up", hope whispers "Try it one more time".

Dropping the F-bomb

This post contains language that is not appropriate for children or anyone who is uncomfortable with swearing. For anyone else, I think you may like it.

While there are many times when swearing is inappropriate (especially around little ears), there are definite opportunities where it makes for good expression.

One of those times is when you're trying to describe your pain. I think most of us are well educated when it comes to EDS (if you have it) and can "talk doctor", because we've all gone through years of advocating and fighting for what we need. It's always nice to be able to throw in a little F-bomb as it makes for a really good adjective. Especially because pain is subjective and let's face it, those pain-scales are crap. A lot of us have a really high pain tolerance, but when something hurts it really effing hurts.

The other day I was getting changed after my acupuncture treatment and was feeling fantastic! I bent over and did something to my shoulder/back/neck. It really effing hurts anytime I use my neck or am holding my head up. Same with using my arms...Thinking it's a subluxed rib or vertebrae. Either way, holy fuck does it hurt. I've been incapacitated from pain for the last 3 days. Jerome is still taking his sweet time healing, I can't lay on my stomach, and getting an adjustment with the chiropractor would hurt J even more. This is rather annoying since I've been doing so well. The weather this weekend is absolute crap so I'm not missing out on too much. I was hoping to get a ton of studying done and more organizing. I can't do much of anything...Fak!

This has been a popular saying among the FB bendy community. I say it all time...

Here are some comments I got on it:
-I hope you do feel better tomorrow! :( EDS sucks!

-I am having a crappy pain day too-and you made me smile-so thanks love!

-Feel better soon! We are matching right now! :p Well me with my vista anyway. :(

-I spy a neck collar?

-You spied right...had an awesome treatment, got dressed, bent over and now I've
funky neck/traps woot! At least the rest of me feels okay.

-Lots of soft hugs, and I couldn't agree more with the message!

-You really shouldn't be so shy, speak up when something ticks you off.

-Fuck You seems to be your favourite expression. Nothing like a swear word to release some frustration. Keep expressing yourself, Nakki

-My shoulder is dangling out of the socket as I write this. Hope you feel better and get that collar off soon! Hugs

-I hope your shouler goes back where it belongs soon. I love your dedication ♥ Gawd, we sound so effed up...boring is over-rated anyway.

-We call it dedication... others call it mental illness.

- I hav a pretty bad cold mixed with pots...still i Send u a few spoons my dear!

-Tomorrow........... ♥ Your pic sums it up nicely. ♥

-Say it loud! Say it proud!

-keep it coming ! :) That is what I think too!

-my sentiments exactly. love, hugs and nothin' but good Ju Ju coming your way! ♥

Then one of my friends sent this my way: http://www.good.is/post/why-swearing-is-good-for-you/
It made my day :)

I think it's important to be able to have some deliciousness when feeling gross. We go through enough everyday and really, being able to eat something yummy is a right! Or at least it should be. What do you like to eat when you're feeling like ass?

You've got to check this video out, it's brilliant!

"Be who you are, and say how you feel because those who mind don't matter, and those who matter don't mind."
(Dr.Seuss)

There ain't no party like a tattoo tea-party!!!

Once upon a time, there was a group of bendable princesses. They had met in a far away land called Baltimore,where they promised to always remain friends. Finally one day,they reunited and got dressed up for a tea-party. Now,this wasn't any tea-party... It was a tattoo tea-party!!!!

That's right, not only were there scones, cucumber sandwiches and clotted creme...There was ink!


After they had enough of being all dainty and lady-like, they busted out the bendy tricks.

Who wouldn't want to ride off into the sunset with these princesses?


Some opted for the temporary option, as those princesses could slay any dragon with their eyes closed.


Then it was time to get down to important royal matters. The needles came out, and three princesses were ready to commit themselves to a lifetime of wonderful self-expressive art.

Princess Giggles wanted to go first. She may look innocent, but don't let that pretty face fool you.


She took those needles like a champ! Especially on the underside of her arm.

Ta Da!! Princess Giggles had the brilliant idea to combine sign language and text to say:"Zebras exist", with a lovely border from her favourite CD. This is based on the adage a lot of doctors are told "When you hear hoof beats, think of horses." Meaning, look for the most obvious symptoms and signs first. EDSer's say that "When you hear hoof beats, think zebras" or "Zebras exist." Meaning, don't just go after the obvious.


Next it was Princess Chuckles' turn. She wanted to try some Emla creme from the apothecary, complete with a frilly white glove.


Yes, a princess can have her tea and a tattoo. She can have it all!

We weren't sure if Princess Chuckles super-powers were at work or it was the creme, but it was a nice time to talk about the happenings around the kingdom.


With some new ink, Princess Chuckles can take down any knight in a jousting match.

Especially with her Endless Determination & Strength. Princess Chuckles wanted to bring new meaning to EDS, and do it her way!!

Next Princess Nakki's turn came. She was ready, especially since getting her shoulder put back together was no longer part of her royal duties. Ink was far better than any battle scars.


She also had a lovely time talking about those crazy unicorns running amok throughout the kingdom.


Oh my word! Princess Nakki isn't all sugar,spice and everything nice... Just kidding.


Princess Nakki was very happy with the final product. Especially since the blue ink glows in the dark! Also, that she can always carry a reminder about how far she has come on her journey,and to never lose sight of what's important.


Then it was time to have some more happy juice. All the princesses found their lack of proprioceptive awareness rather entertaining, since it was no different after some of that juice.


Court-jester Jerome provided some entertainment. Princess Nakki learned that she would rather stick to letting Jerome have vodka or rum instead. Red wine stained Jerome and his props.

The princesses laughed and laughed about breaking things, because they felt like they were the only ones in their kingdom who had such talent.


Princess must always be dainty, and dressed their best.

Until they get tired of it, throw on some pj's and apply more ink.

Since bendy princesses spend lots of time on the floor, they decided to compare toes to see who would fit in a glass slipper. Would it be a hyper-mobile, classical or vascular princess?


The stroke of midnight had passed, and the prince rode off in his carriage without a princess. Too bad for him. These princesses had the time of their lives and rocked that tea-party!

"And they all lived happily ever after....."