The time EDS threw me into the epic pit of doom, and I slowly climed my way out

It's been f.o.r.e.v.e.r. since I've logged on and actually wrote something worth posting. There were a bunch of futile attempts but nothing I felt was worth hitting the "publish" button.

To sum it up, EDS kicked my ass. Royally.

The migraines and gastroparesis got out of control and basically left me unable to do pretty much anything. I had to completely stop working, and figured that I was okay because I still had school going on. Eventually that had to go too. I couldn't do any of my readings without getting slammed with a killer migraine and spent the majority of my time laying in the dark. Gastroparesis left me refluxing and vomiting anything I put in me, wether I ate it or put it through Jerome. Nothing was working.

It all began to affect every other aspect of my life, which eventually led to depression. I was done with trying beat being sick and resigned myself to being stuck in the epic pit of doom forever. I stopped caring about everything and felt like I was just existing. I didn't have anything going on besides being sick.

There were so many things I wanted to do, but there was NO way any of it could be done. I had figured if I couldn't do the school thing, I could at least volunteer. However, being that sick made it impossible. Being as sick as I was, left me with no consistency other than knowing at some point during day I would end up laying in the dark barfing. I had no idea where I was going or what was going to happen next, and it scared the shit out of me.

The one thing that did stay consistent was the unconditional support and love from my friends. I was lucky enough this time around, that most of them stuck around. They knew how sick I was, and did whatever they could to help. They were the ones who met me at the bottom of the pit of doom and helped me dig myself out. I couldn't really go out and do much of anything, so they came to me. My living room and bed became the places for us to hang out, unless it was a good day and I could lay on their couch or floor. Countless ice cream and finger-painting dates were had on my bed, and that was the very best medicine. I had friends who'd roll with the punches and make the most of whatever my symptoms were throwing at us. If I wasn't well enough to be upright, we'd lay in the dark and talk or meditate. In the evening and at night was when my body could tolerate food, so we would have picnics in the park at night. My friends would come to consults and appointments with me, knowing how hellish they had become, because no doctor would go near me. My friends are the ones who kept me participating in life, who kept me afloat when I was too tired to swim. They always picked up the phone at stupid o'clock in the morning when I was having the biggest meltdowns of my life, not knowing what to do with myself. One thing that was vastly different this time, is that I knew without a doubt that I could trust my friends. They had my back, no matter what. None of what they did was out of obligation, it was out of love. That reason alone, has been the thing that has given me the drive to climb out of the epic pit of doom. I can't thank them enough for everything they've done, but I know I don't need to thank them, because I'll have their back whenever they need me. That's just how it works.

Some of you might choke on whatever you're eating when you read this part...The other thing that made a difference is that I finally found doctors who will take me and my crazy body, and do whatever they can to make life better. It started with one doctor after an ER run, he was the first one other than Awesome GP to listen, believe me and rack his brain to find things that would help. He was the one who gave me hope, and encouraged me to hold on. He was the one who found a medication that helped the migraines, and who referred me to other doctors to get the GI insanity sorted. Interestingly enough 3 of my favourite doctors went to school with Awesome GP. Now I'm happy to say that I've got an incredible team of doctors who are also willing to take on other bendy's.

I'm going to finish this post with a bit of a happy ending...a month ago I finally got that Nissen Fundoplication done. It's been a month since I've last had reflux or vomited (for real). It took years of doctor fighting, countless tests, ER runs, hospital admissions, extra-parts (J-tube, Port-a-cath), injuries from the said barfing (I gave myself a hernia), 25lbs lost, being hooked up to a portable IV pump for a month and endless advocating. Now I'm recovering with a light at the end of the tunnel. When I'm fully recovered, I can just have a plain g-tube (I'll call it Gerome), won't need my port (Perry). I'll start being able to get some of my life back, it will be far less complicated and I can start moving on to other things while I get the cervical instability sorted. I know I'll always be needing surgeries and procedures to stay alive and well, but having surpassed the biggest hurdle yet feels great. It couldn't have been done without the endless support of my friends, family and kindness of strangers. The universe has taken me on quite the ride and brought some truly incredible people into my life. I'm excited to see where else this journey takes me and the other people I'll meet on the way.

Our Bendy Posse has grown significantly not only in numbers, but also in how much we consider eachother our own family. From a group of people who met on-line a couple years ago, then meeting for real months later at a conference in another country, we worked hard at networking, advocating and building a relationship like no other. It is fair to say that we'd do anything for eachother, with nothing being out of the question and all out of unconditional love. We take turns being guinea-pigs for surgeries and procedures, refer eachother to doctors, do fun things outside of all the medical junk we deal with and will stop at nothing to ensure our bendy brothers and sisters are taken care of. Alone we can manage, but together our strength can't be measured. And you'd better believe no one messes with this bendy posse, no one.

As dark as these times have been, they've also been a time of significant growth with lessons that couldn't have been learned otherwise. I have so much gratitude for the people who've helped me out in the last year, no matter how big or small their contributions have been, none of it has gone un-noticed and I am truly grateful for it all. I never thought in a million years that a crazy disease would bring many people together from all different walks of life, to help out a girl who just wanted to give peace, compassion, creativity, love and empowerment to those in our world who needed it most. I guess the universe figured that it was my turn to be on the receiving end this time, so I could take what I learned this time and apply it to my previous work, to create something more powerful and filled with love and compassion that could be given to whoever needs it next.

As this journey gets more wild and crazy, bigger things are happening with regards to awareness and treatment of those with connective tissue disorders or other rare diseases. I couldn't be more proud to be part of this revolution, knowing we're in it together and changing things for good. I guess it goes to say that we should never underestimate the power of bendy people and the people behind them, because we make big things happen.

Thanks for sticking around, when this blog has gone silent for the past while. I'm hoping that this is the beginning of regular updates and good news to follow.

These pictures are in no particular order, but I've been wanting to share some of them so here we go....

This Soctopus's name is Juju, given to my by a bendy sista' who came to visit after I got fundo'ed. On the back of it, the phrase I constantly use "Just keep swimming" was embroidered. Juju made recovery so much happier. Interestingly enough this bendy sista', was a friend of mine in high-school who also had wacky health related stuff going on too. After learning about EDS on my Facebook and doing a little research, we got her in with Awesome GP and the same geneticist. Turns out, not only are we high-school friends, but officially bendy friends too! I'm so happy she finally got a diagnosis, but sad it was EDS...You know how it goes. She's a regular at my house, we spend hours hanging out in my bed, finger-painting and eating cookies. Because at least if it tastes good going down, it's worth it coming back up! Isn't gastroparesis awesome?!

This was fundo day, and Tiff and I made sure to make it FUN as possible. We busted out the Sharpies in pre-op to kill some time and cover me in juju. She drew everything lucky she could think of on me before they wheeled me in the OR and started chopping. After I got out of recovery and back in my room, the colouring continued and my entire leg was covered. She was the recipient of foot and calf massages while she coloured, as her dislocated metatarsals weren't happy and needed to be elevated. It was yet another opportunity for me to trust (something I've been working VERY hard on) and she took such excellent care of me since I couldn't do anything myself. She made sure my head/neck were supported when I was re-positioned, she re-located joints for me, got me drinking sips of juice, and gave the team of dr's hell (I mean educated them) when I didn't have adequate pain control. She was my "person" and I wouldn't have wanted anyone else for this round but her. When she get's fundo'd I'll be her "person" and will do whatever it takes to make it FUN cause that's how we roll.

 A very dear friend of mine gave my this Tibetan Buddha she got while she was in Burma a while ago. There's a pretty incredible story behind the whole thing, and she was sure the universe wanted me to have it. I loves that Buddha!!! The crystal he's holding is from another one of my favourite people and dear friend. It comes in my pocket to all my appointments and is packed with juju to work it's magic whenever I need it. Those beautiful flowers are from one of my "other mummy's" who's been a constant source of love and encouragement for years. She always finds the coolest healing/encouraging things to send and those flowers came to me one day when I was feeling extra-poopy. She has a magical way go getting things to me when I need them  most. I love how I was able to capture all of these beautiful things together in one picture, that makes me so happy every time I see it. As it's jam packed with nothing but LOVE.

Surprise, Surprise there's always a bendy in the hospital. I had an idea one day to make a Bendy-Bag O' Fun & Survival for whoever was inpatient. I told another bendy sista' about it, and she jumped on board and we filled that bag with so many awesome things before heading to visit Christie at Chateau Sinai. When she gets discharged, her job is to add another item to the bag, and send it to whoever is inpatient next. We hope the Bendy Bag evolves into something far beyond what we could ever imagine, since we're pretty good at doing things like that in crappy situations. It's one of our posse's super-powers.

Some more awesomeness that came when I was sicker than ever, was multiple hair-cuts from a friend of a friend who thought I needed a pick me up. Darlene does such an excellent job with my cave-man hair!!! I also got a package from another bendy sista' Brooke who sent me the coolest surgery pants ever. Of course they didn't let me wear them during surgery, but they were the first things I put on when I got to my room. These pants make me so happy!!

Right now, Christie is stuck at Chateau Sinai with a host of GI craziness very similar to what I had, and pretty much every EDSer who's got gastroparesis. We managed to bust her out one afternoon for some fresh-air and sanity, which is the best medicine ever. She perked right up, and looked so good after getting out for a bit. Poor girl is still stuck there, so our posse tries to make frequent visits to make sure the doctors are doing their jobs, and restoring sanity along with some much needed silliness. 

 No, I promise we don't need to be moved to the psych floor. This is part of our dx...This photo is a bit old, I was still recovering and couldn't sit, constantly needing ice-packs on my swollen stomach.

 Miss Brooklyn has been through HELL and back, not only is she the first in our group to get spinal fusions, a Chiari decompression, she's getting a fundo now too. I'm excited for her because there will finally be an end to all the GI insanity, but this girl needs a break!!! She's my J-tube and port-a cath buddy. It's hard to see, but in this pic we're both hooked up and getting infused at a bendy get-together. She's one of the toughest cookies the world has yet to see. Nobody ain't got nothin' on her! Yet, sweet as pie. We loves you Brooke!!

 Ted had surgical craziness around the same time as well. A simple procedure resulted in insane bruising from his hips to his toes, along with a hospital admission. Thanks to dr's and tech who decided not to listen, and had a bit of the god complex goin' on. This is why we have to fight so much, dangerous things happen to us so easily when we're not taken seriously. Sadly we end up having to prove them wrong, by enduring the consequences of horrible judgment. Soon our guitar playin' brotha' will be back at school, composing and playing some incredible jazz for the world to hear.

Tiff, my sista' from anotha' mista'! I can't wait to take care of her when it's chop-chop-fundo time for her. We make a great team and I'm so happy that we found eachother. Neither of us believe to this day that it was at a medical conference in Baltimore, when I randomly offered to tape her ankles, and we both realized that we lived in the same city. Never in a million years....Thank you universe for bringing us together!

So now that I've got this post hot off the press, to say....There will be more to come. Thanks for the reminders to write, and the encouragement to "keep swimming" when I felt the only thing I could do was drown. Thank you for keeping me afloat. Nak is back!

I think my next post will be about our 80+ member strong real-life support group we've worked so hard at creating for ourselves in Ontario. We had a mission, and boy did we deliver!! It's cause we're awesome... If you are someone in Ontario who's got Ehlers Danlos Syndrome and are looking for support look here :Ehlers Danlos Syndrome Ontario (EDSO)

Awesome GP does it again!!

I went to see Awesome GP yesterday to see what he could do,so I could get help with this GI stuff ASAP.

I won't bore you with details, but let's just say I've got it good!!!

Awesome GP didn't like the idea of me be being suck in the hospital getting fluids and things while I waited to get the fundo surgery. So he set up for home-care to come and hook me up. I'm at home with fluids and Zofran while he finds a young, open-minded surgeon who will take on me and my crazy body.


Another pump?! There's no way I'm going to use this gigantic dinosaur. I'm sure it's just as loud and obnoxious as the hospital pumps. I'm kicking it old school and using gravity! Then I can take my fluids anywhere in the house, and even hang the bags from a hammock. The poor delivery man was so confused when I wouldn't take the IV pole either.


Some needles, tubing, canula's, Zofran and fluids! I'm going to look like such a junkie after this...



I just finished packing up at box of supplies I don't need, and then got another one. Anyone want gauze? I have about 4yrs worth of it.


I got an "I'm proud of you" from my nurse today. I guess they're not used to having patients who are independent and can advocate like it's nobody's business. I didn't have to fight for anything today, after we cleared up the fact that I refuse to use the pump and IV pole, and we're doing this MY way.

The bendy posse is getting together again this weekend, so there will most definitely be a very entertaining/messed up post with pictures to come.

I also want to thank all my bendy friends for their advise and support. I've decided to scrap the TPN but still push for the fundo surgery. There's no way we'd make it through without each-other. It was so nice to talk with a bendy friend who's also getting fluids & Zofran at home, and kicking it old-school with gravity. It's because we're awesome :)

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".

Coming back to life, it's totally possible.

I have about 5 posts that are half-written. I can't seem to spit out what I want these days, or it could also be that there's so much going on. A lot of changes have been happening, most of them really good.

I've been able to sit out in the sun and do my readings/study for school and it's been fantastic. I've also been meeting with my OT a lot, and we've been making some pretty cool writing tools. Still working out the kinks as to what works best, but I think it's also a day to day thing because our bendy bodies change so much, even throughout the day. The biggest news is that my dysautonomia has gotten so much better. I've stayed away from the ER for 3 months now, which is a new record.

Check out the video, it will explain more.



Now, this is not to say that I've been "cured" or anything from dysautonomia, but the symptoms are being managed and we've found what works. That in itself, is worthy of celebration in my eyes. Considering I lost a year and pretty much everything else in my life, I am beyond elated at the progress and now stability. It's so nice to be able to focus my energy on what I want, instead of just surviving.

I hope you can all find something that works for you, where you can feel good in every possible way. There's nothing like coming back to life...nothing....

p.s. Jerome 2.0 says "Hi". I still can't lay on my stomach and because of my awesome proprioception, high pain tolerance and poor wound healing, I keep hurting myself. It doesn't help that last week someone caught their bags on my tubing and yanked it out while I was going down the stairs. Here's to hoping Jerome fully heals soon. I'd like to be comfortable again as it's been almost a month, but it took forever to heal before so I'm not surprised.

"Develop an attitude of gratitude, and give thanks for everything that happens for you, knowing that every step is a step toward achieving something bigger and better than your current situation."
(Brian Tracy)

The Importance of Fun

Sometimes you just have to do things because you can, and it's fun.

Things like...
- Puddle jumping
- Blowing bubbles
- Art
- Breaking plates for stress relief
- Singing at the top of your lungs
- Having food fights

-Turning finger-painting into face-painting and laughing about it until you cry.


Another item on that list for some, is laughing at the otherwise hard things in life. It's what keeps us sane, and allows us to have our heads where we like them.

I've been playing the avoidance game in terms of emotionally dealing with the whole needing a pump, and how it's going to change things that were not in the game plan. It's starting to catch up to me, and every stupid thing makes me want to cry. I'm not a crier...Most of the time, I choose to laugh. It reminds me to find the positives and roll with the punches.

My bendy friends are constantly coming up with some of the most hilarious and brilliant ideas. We all had a good laugh about one of them and decided to make it happen. This little project will hopefully evolve, but for now check this out....



Pretty bad-ass eh?

I want to use the same idea for something like this:


And just because this has been a popular saying among bendy friends:


One of my "best-est" bendy friends Sama posted this, and I think it's brilliant. Funny enough, we were both working on a post about the importance of fun at the same time without knowing it. It just goes to show what happens when minds think a-like.

"Us Zebras rule. Best gang of weirdo's everrrr!", "EDS Represent!", "L.A. Bitches!" "Fo Shizzle!" (Bendy friends)

Because it's important....

Since this is my blog, I can do what I want with it :)
This isn't exactly EDS related, but I think even more important.
Please take two minutes to check it out, and pass it on.

A lot of firsts, and Clothes & braces part 2

Sitting in the world's most comfortable bed, and eating a bowl of ice cream.... I am doing that right now and it's wonderful.

I guess I'll start with the Jerome (gj-tube) drama.
Well it got infected, but I got antibiotics straight away and it's cleared up. The GI specialists said it was because A) I am "a little bit chubby". Hey, it's better then last time when I was "fat". What an ass. B) I have EDS. I say we're professional slow-wound healers. Tape is driving me INSANE, even paper-tape leaves epic rashes. A week after J got put in, I started sleeping without any thing on my skin to let it air out and heal. It was all fine until one morning, I woke up around 2:30am with the tube pulled down to my knees. There was a brief "holy shit!" then I cleaned J off, and put it back in. I was tempted to go back to my nice warm bed, but decided the ER would be a sensible idea. It was already infected, kept coming out, and I wasn't sure if it was back in place. The last thing I needed was to mess up the rest of my GI system. The ER doctor was excellent, we tried to flush it but it felt really weird. He ended up ordering a new gj-tube to get replaced a few days later, but I was not allowed to use the tube. Having to go back and ingest things that tasted gross wasn't fun. I went in to get the tube replaced and was ready to fight after my disaster of a hospital stay for the tube. It turned out that the doctor doing the procedure was a vascular surgeon, who knew a lot about EDS but I was his first type 3. He did a fleuroscophy first to see where J was, and what the problem was. Well we found out there were no problems. Apparently I was thinking straight when I cleaned up J and put it back in. Take that EDS!!

I've learned that I still can't eat anything in before at 1pm at the earliest. Also, that I need to put stuff through tube before anything in my stomach. Otherwise I end up puking, and whatever was in my stomach will not stay down.


Now for braces and clothes part 2.
A friend of mine had an extra ticket to the ballet tonight and thought I'd like to go. He was most definitely right. Yes, I can be a total girl. I used to go to the orchestra quite regularly. Trying to find clothes that could still fit was an adventure to say the least. I have three pairs of shoes that I can wear with the AFO's. The pair of skateboard and purple shoes would not be worn to the ballet. That left me with some black, but good looking men's shoes. Long gone are the days of wearing a cute dress and heels. I had lots of pants to wear, but they were all too big because I lost weight from dysautonomia, and they were too long as I used to wear heels with them. I found a pair that was once too small (so glad I had them) but they were too long. The Leuko-tape that sometimes holds my joints together was put to good use. This was the first time that I got really anxious and self-conscious about my braces. Luckily I got a quick pep-talk from one of the most awesome bendy friends and I was ready to take on the ballet. The show was amazing, I'm glad I didn't chicken out.

I have complied a pretty big list of all the different places that I've laid on the floor. It even included the time when I went to see Dalai Lama. The ballet is not a place for that. Staying upright for that length of time was difficult and uncomfortable. Maybe my body isn't cut out for that kind of thing anymore.

I still have to sort out the mess that went down at the hospital for my gj-tube placement, and for a few other things.The whole experience has pretty much sucked the life out of me. Apparently western medicine still really messes me up in the head. There are a handful of people in that group that I do still trust and they know it. Haha, no pressure for them! Awesome GP has gained about 10,000 points this month, I'm so glad to have him.

"Do you know the muffin man?"
"The muffin man?"
"The muffin man!!!"

(Shrek)

EDS + unnecessary night at the hospital ='s hell.

Well, I have to say this has probably been one of the longest nights of my life. Yesterday, I was suppose to be admitted around 12:00 to hang out until this afternoon until my surgery. Why? Who knows, I'm still trying to figure that one out. My friend and I got to the hospital on time and were told that there wasn't a bed ready yet. They told us it would be a couple hours, luckily my friend lives down the street so we ended up going to hers. Two more hours passed and they still didn't have a bed. We said screw it, and decided to go out and enjoy the beautiful warm sunny weather and ended up hanging out in Chinatown while we waited. I'd take that any day over sitting for hours in a waiting room. We both ended up with fun accessories before there was a bed ready. I got admitted and everything in place.They did some blood work and got a line started, then the resident came to check things out and find out more about me. She was fabulous, much better than the GI specialist who isn't too keen on listening to me and asking my opinion of things. I was able to eat the food I brought and just made myself comfortable for the night.

That's when it all went down hill. I wasn't allowed to take my supplements because they don't know enough about them to know if there will be drug interactions or anything else. Wonderful. That left me screwed. The stuff I take helps with pain, insomnia, anxiety, muscle cramps and just about everything else. Hospital pillows suck. They're thin, covered in plastic and filled with air. Not what someone with EDS needs. There were a million nurses in and out of the room (which is no problem, they're doing their job) but when sleep helps with pain control and you're not getting it, life isn't fun. Luckily, my night nurse kicked ass and managed to get me some Advil, ice packs, more pillows, fluids and did whatever she could to make things more comfortable. She also took the time to understand EDS in all of it's glory.

I ended up having a meltdown at one point. I was so tired, sore and frustrated that I was stuck in a place that was suppose to be taking care of me, but it was the complete opposite. If I were home, I would have been comfortable, in far less pain and probably would have slept pretty well. I'm essentially running on a nap, so the anesthesia is lookin' pretty good right now.

The tube is suppose to go in this afternoon. I'm not on any food or liquid restrictions, WTF? I haven't had anything to eat or drink since midnight last night and plan to keep it that way. I think someone forgot to write a few things down. How is it that I'm restricted for a gastroscophy but not a gj-tube placement?

The need to self-advocate never ends, but I'm okay with it if it means better care.

I ended up back in the ER the other day for dysautonomia, I managed to make it a month between visits so kind of proud...much better than the 3 times in 2 weeks last month. After the first time, I e-mailed the patient relations department with a link to my blog about how awesome the ER team was. Last week they let me know they sent the link to the ER department, which was pretty cool. The doctor who treated me this time, recognized me from my blog. Yep, he read it and I got to tell him what I needed, not the other way around...Epic Win!

"So you have Elhers....I don't know how to say it Syndrome and Dys-what?"
(Pretty much everyone who's taking care of me here)

Moving at warp speed: AFO's, surgery and life all at once

Where to start....

Well, I've got my AFO's and they're awesome!
Originally, had wanted them to be short and hinged. When I went to pick them up, they were tall (or I guess standard size). The orthotist thought it'd be a smart idea to keep them tall and give 'em a try before cutting them down and loosing the option of going back. Stupid me, never really thought of that. I'm an impulsive and rather stubborn person. I get an idea and go for it without looking back. The idea behind keeping them tall, was to help with the knee hyper-extension. I put them on, stood up, and my knees hyper-extended. Scrap that plan, EDS had other ideas. I decided to give it a few days, sleep on it, and see if I could get used to them. Two days later, I was back getting a bunch of modifications. I had somehow managed to pull my calves, which is pretty much impossible. My legs are always tight, I'd love to be able to stretch them but I'm just too bendy. The only time they get a stretch or dug out is when I'm at the chiropractor and she goes in with the elbows. The fact that my legs were stretched and sore from the AFO's was not a good sign. We ended up cutting them down to the same height as my PUSH braces I had before hand. A bunch of padding got removed and some added to other places. I got the bottoms completely padded, along with some supports put in where my toes meet my feet. It was gross walking around feeling all the little bones slide around, they needed to stay in place. Now, I have some bad-ass AFO's. My ankles are stable, and I don't internally rotate my hip nearly as much. When I do walk with my leg turned in, I can correct it and maintain it. One of my friends noticed straight away how much better I was walking.

I only ended up with one pair of shoes that fit, and still have to part with 18 other pairs :(
Luckily, a friend went shoe shopping with me this weekend, and I came home with 2 new pairs. I'm glad she came with me, as I probably would have had a meltdown over shoes if she hadn't helped keep my head on straight. It only took 4 hours and a million fails, but we did it. The coolest part of this so far, is that I was able to walk around those 4 hours without any problems. Nothing really hurt, and I still had energy at the end of the day. There's no way I would have been able to pull that off before, my limit was about 1.5 hrs. So, even though they're bulky, hot, and sometimes bring unwanted attention, I.LOVE.MY.AFO's.

Surgery...that's happening in T-8 days. Yep, pretty soon I'll be able to "eat" anything nasty via gj-tube. I'm really excited at the thought of being able to avoid the following things: blocking my airway, insane reflux, vomiting, TMJ pain, and getting pneumonia from aspirating. 4 times in 3 years is enough for this girl. It should also help keep me out of the ER when the dysautonomia gets crazy. I will also be honest and say I'm a little terrified. The GI specialist doesn't really seem to get the seriousness of EDS and the issues that come with it. I feel like he completely discounts the fact that autonomic disorders are secondary to EDS, which is extremely frustrating. When I went to fill out the pre-op paperwork, he had already completed some of it. Apparently, I'm not at risk for having bleeding, cardio. and neuro. issues from the surgery. Hahahaha. That all had to get fixed. I made an info. pack for the anesthesiologist, so I'm hoping they do some reading, and keep a good eye on me. They're using general anesthesia, since locals don't work on this girl and I'd rather be completely knocked out and have the best nap of my life, than to feel everything and loose more trust in the medical community. I guess one of the things that really makes me nervous is potentially waking up with a subluxed neck (I just got over my last one) or more TMJ issues which is very probable from intubation. Barf!

So far, the hospital seems to be taking this EDS thing seriously, and for that I am thankful. It's going to be really inconvenient and I'll probably go crazy from boredom at one point, but it's better than being neglected. I've got to go in 24hrs before to be admitted...They don't need to run any labs or tests since they have everything on file from my ER visits. No complaints about avoiding blown-out veins. I hope the nursing staff understand that I'm not a princess when I ask for 5 pillows, to keep my joints in place. I almost managed to give myself a little panic attack when I realized that going outside as I please, won't be an option. It's going to feel like jail. I need to be able to go outside, it's the one thing in life that keeps me sane. Maybe my friends can help me escape when they come visit.

I've been very fortunate to have friends offer their help with whatever I'd need. I've got one friend who's going to be my "person" when I'm in surgery. I'm going to leave her with a bunch of EDS info, and I know she'll advocate and raise hell if need be. I've got some other friends who are going to bring me some yummy, non-hospital, wheat-free food. Mmmmm. So far, it looks like my bases are covered from visitors, to food and everything in between. This weekend will consist of pre-cooking meals and getting everything together. I am determined to recover comfortably with minimal stress and good food. It's a bit ironic how I keep obsessing over food, when I'm getting a tube put in me because food isn't much of a friend. The one thing I'm not worried about (yet) is pain control. I know that if it can't be controlled with meds, which shouldn't be a problem, I'll still have my super-powers and juju coming from my friends.

The year seems to have flown by, and now I'm thinking about my plan "C" and what it will entail. It's a new beginning which I am very excited for, but it also means another end to something I love but have had to give up. I'm really going to miss my current job. There is so much magic that happens, and I've never gone a day without learning something. Every work day contains fun, discovery, mastery of a new skill, a good laugh and some of the most innocent moments life has to offer. I wish I could bottle the stuff that my work is made of, the world would be a happier place. I get paid to play, finger-paint, teach, eat ice cream, go to the beach and so many other awesome things. I have no interest in a desk job, none at all. Not only will I be sad to leave the kiddo I've been with almost every day for 2.5 years, but it will also signify that I have officially given up the last thing that was still on the "can do" list from before things got bad. Thanks EDS.

I'll have some pictures of the new bad-ass AFO's and body-piercing. I've already come up with some ideas to make the tube look cool, and if not, funny. Life is too short to dwell on the silly things, we need to find the fun and run with it.

P.S. T-2 days until I see the Dalai Lama. I'm going with a bendy friend, we scored accessible seating, a first for both of us, should be interesting. He's doing his talk on Approaches to World Peace. Sooooo excited. The place is going to be packed with juju and everything good!

EDS+ Dysautonomia + Mt.Sinai ER ='s AWESOME!!

I guess, you weren't expecting my title to be so enthusiastic, considering it's contents.

I spent Monday afternoon in the ER due to dysautonomia craziness.
The weekend was fabulous, I had energy, low pain levels and felt like a relatively normal person. The exception was that I didn't really sleep the entire weekend. My body wouldn't let me, with the almost constant adrenaline rushes.Monday morning, I woke up feeling gross. I had the text-book EDS type 3 autonomic (over-response) issues. Upset stomach, dizzy, feeling faint, exhausted,sweaty, elevated heart-rate, palpitations and just all around gross. I decided to go into work and was sure I could make it through. Definitely thought wrong.

On way to work... barf! So that was the end of work,I knew it it wasn't going to get any better. Last time I felt that way, it lasted more than a week. My suspicions of an ANS disorder were totally confirmed at the EDNF conference. I figured I would be smart about it, and head to the ER to get myself sorted out. I ended choosing the hospital where my geneticist and GI specialist worked out of, figuring they'd already have some of my stuff on file. I went in, and didn't have to wait. Handed the triage nurse my OHIP card, my card from the hospital and the EDS info card form the EDNF. http://www.ednf.org/index.php?page=shop.product_details&flypage=flypage2.tpl&product_id=18&category_id=12&option=com_virtuemart&Itemid=88889131.

The triage nurse was eager to take the card,do some quick reading and let me explain it to her. They got me a bed, and I saw the ER nurse to get vitals and blood work taken soon after. My HR was 114 and my BP was 138/96.My ECG synus rhythm came back irregular, and my WBC's were a bit elevated. I asked the nurse if the IV could at least be done in my hand, so I was free to move my arm and wouldn't dislocate everything. She said she'd try it, and also take a shot the blood-draw through the line too. She totally rocked it and did the it all in one shot! In the meantime, the Dr. was doing some quick EDS research and saw me shortly after. He asked me all about the symptoms, how it's normally treated and what I wanted to do. How awesome is that?! I ended up getting 1L of non-saline fluids and 50mg of Gravol through the line too. I had a little laugh to myself, when there were people thinking the world was over because of a sprained ankle. At one point asked an other nurse if there were any extra pillows I could use to position my body, so everything wouldn't dislocate. They didn't have any, but offered me as any blankets as I wanted, and we'd fold them up. After I got myself positioned, I had a bit of a nap and woke up to realize that my fluids were only 1/3 done. The fluids and blood draws took forever...EDS thing? A bunch of text message conversations and a nap later, my fluids were done and I was ready to go home. I finally felt human again and was ready to jet. They took my vitals again and my HR got back down to 65 and my BPwas 111/63. The Dr. thanked me for my patience, and for knowing about my stuff with EDS.

Not once in the 5ish hours that I was there, did I have to fight, make any request more than once or try to prove myself. I was listened to, taken seriously and treated with such awesome care. That was the first time in 13 years of dealing with this EDS mess, that any of this good stuff has happened. It was incredible, and may have renewed my faith (just a little) in the western medicine community. I had the best sleep of my life that night!!

The next day, I ironically had an appointment with Awesome GP so we got to catch up on everything post-conference. He was really interested in the whole thing and I think finally understood the complexities of EDS and autonomic issues. I gave him a print out of the Sleep/ ANS disorder discussion from the conference, he seemed pretty excited to check it out and learn more.

So when a cardiologist refuses to see you and says "there's nothing wrong with you, you were fine last year, so you're fine now", your body will eventually prove them wrong. Synus rhythms don't come back irregular for nothin'.

Know that despite all the horrible experiences we encounter day in and out with doctors and other medical professionals, there are some awesome ones out there and they kick ass!

Thank-you Mt.Sinai ER!!!

"No one can make you feel inferior without your consent"
(Elanor Rosevelt)

Out of the poopy stuff comes enrichment

Loss, it's been a big thing around here. I won't lie, it hasn't been easy. There are many days when I really miss my old life. A huge list of things I miss could be placed right here, but it's unnecessary. Making a list won't bring any of it back, or make it any easier to deal with. Instead, I'll go on about the enriching experiences that have come from this mess, and all the things that make me come alive.

I don't think I need to talk about how important the switch to natural medicine has been for me. I'm sure you all know by now my thoughts on it, and how important it is to my overall well-being.

Because I love food, we'll start there. When I first gave up eating wheat,dairy,corn,oat,grains and caffeine the whole idea of living without these things looked daunting. How would I get by without all of it ? The first while was a little hard. I had to replace pretty much everything I was eating and find a new way of doing it. Almost right away, I noticed how much better I was feeling. I didn't have insane reflux or stomach upset instead, I had energy and felt like a million dollars.

I used to spend a lot of time on the water, I'd be in a canoe or kayak as much as possible. I've made some incredible memories and wouldn't trade them for the world. Finding new outlets to replace paddling was hard. I didn't think there was anything that would come close, and there hasn't been. It may be that I don't want to believe there's anything better, or abandoning that idea would somehow make me loose that part of my life's story. Either way, I have had many new and brilliant things come into my life that otherwise wouldn't have happened. For that, I am thankful.

There is nothing better than hanging out in a park with friends on a warm, sunny afternoon. Throw in some alcohol and other deliciousness, and life is good. Drum circles on a summer's evening with a whole bunch of people just chilling out, dancing and jamming with their own instruments is also a blast. Let's also not forget all of the festivals that happen with a bunch of friends.

If I were still able to paddle, I would have left the city for the G20 and gone to play in the water somewhere else. Looking back, I'm glad I was there to experience it and see more of the real problems that are happening in my back yard. What happened to this city during the G20 summit was horrible. There was a disgusting amount of police brutalization that thousands of people had to endure for no reason. So many of our rights were violated. The police force, and the government were caught lying on multiple occasions trying to make Toronto's diverse group of advocates look bad. People who are responsible for the mess keep passing the blame and pussy-footing around the subject. They're cowards to say the least. This has allowed me to be one of the thousands of people who's voice won't make the problem just go away, or let the public and the country forget what happened. We're in it for the long-haul and it will eventually get dealt with, justice will be served for all of the people who suffered at the hand of the police and the government. Nobody ever got anywhere by being quiet.

Having to give up climbing has lead me to start taking Taiko lessons. I miss scaling the walls, but banging on a huge drum with a bunch of cool people is just as awesome, maybe even better.

I'm going back to school. I can't do my jobs anymore and need something different. As much as I love what I do, it's time for a change and I've found two things I'd love to do. Being an Art Therapist or a Child-life Specialist will allow me to continue working with a holistic approach and give me more opportunities to work with different populations of people. What could be better than playing and doing art for a living while helping others become okay with what's happening to them ?

I guess the most enriching thing that's come from all this EDS poop is figuring things out spiritually. I found something that makes sense, is practical and something I put into practice all the time. It's allowed this transition to happen probably a lot less painfully than what it could have been if Buddha had not been my home boy. A lot of people ask how I can stay positive as often as I do, how I manage to chill out and get back up when I get knocked down. Well that's my answer....

The other priceless experiences are the ones I see everyday. A lot of people think that living in a big city means I'm at risk for ending up on the 11pm news. I'm glad to say that's not the case. I've met some of the most incredible people while living in this city. One of the things that I love is all the diversity that surrounds me each day. I've been able to check out the incredible cultural neighbourhoods and get a little glimpse of life from all over the world. I've met people from different socioeconomic backgrounds and have had some amazing conversations. The biggest commonality with everyone I've met is kindness and it's humbling. Sure, there are still all the things that happen in a big city and a few bad apples, but I see kindness everyday from all the people who make up the place where I love living.

"Don't ask yourself what the world needs, ask yourself what makes you come alive. And then, go do that, because what the world needs, is more people who come alive."

(Howard Thurman)

Vicotry is mine!!!!

So I went back to the GP with the intention to fight it out again and get what I needed.
I printed off a bunch of dysautonomia info. and was more than willing pull out those fightin' words.

However, I was in for a nice surprise I didn't need to fight for anything. This is the GP who took me on last year, or was it the year before? Anyway, no one else would take me or would even really listen to me except him. I'm talking about Western medicine here... It's been a fight every step of the way.

After my failed attempt with the first GP last week, I called the cardiologist to see if I could get in. I'm suppose to be going back every year anyway to get tests and a follow-up. Since it had almost been a year and I'm having these awesome cardio symptoms I figured going back would be a good idea. Apparently, not. The cardiologist refused to see me because "Last year you were fine, and it doesn't matter if you have new symptoms because you're fine." I brought up the fact that I need to be going each year anyway to keep an eye on everything "No you don't need to come in for a follow up, because last year you were fine." No amount of persuasion worked, and we eventually ended up in a very heated discussion. If I wanted to see her again, I would have to get a new referral and would have to wait a while. I was not impressed at the cardiologist's neglect and today went back to the GP to get a referral to a new one. I refuse to see any doctors that I have to fight with after an initial consult, it doesn't do any good for my mental health and I'm just sick of fighting with doctors.

This time, I saw the awesome GP as last week he was on vacation. I explained everything and he was on board with what I wanted. He did a bunch of blood work to look at everything (CBC, kidneys, thyroid, iron etc.) and make sure we haven't left anything out. He also said that way it would get me into the cardiologists faster. He ordered an echo which I need to do this week, and....thought it was important for me to see a neurologist considering everything that's going on. He's also more than willing to fill out my paperwork to go on disability and back to school since I am now pretty much unemployed (as of Sunday). Thanks EDS.

I'm still not anywhere close to seeing that light at the end of the tunnel. In fact, it's getting darker but it was nice to not have to fight today because I'm just plain tired of it all.
I'll be headed to appointment #4 later this week, so it could end up being a blog-post on it's own. I'm hoping not.

"I'm a mog.Half man, half dog. I'm my own best friend!"

(John Candy is Space Balls)