How do you measure, measure a year....

The adventures our lives can take over the course of a year, never fails to amaze me.

I've been spending a lot of time thinking about how dramatically different my life is now than it was last year.

Just over a year ago, I didn't know anyone with EDS. I lost most of my friends, and had given up almost everything I thought brought me happiness. I got sick with Dysautonomia, was going to get a wheel-chair, needed AFO's and put some serious thought into a G-tube. I had no idea what to do with myself, and pretty much lost all hope for anything good. I didn't trust anyone, felt like a total nuisance and completely alone.

Little did I know my life was going to change, and it was going to be for the better.

I was very lucky to be given the opportunity to go to the EDNF conference in Baltimore. I had no idea what to expect going into it, but figured I had nothing to lose. Those four days changed my life. It was then I realized that even if I didn't fit in with the rest of the world, there was a whole other community that I belonged to. A community with some of the most incredible people I know. A community that is pro-active, ridiculously supportive and a community of people who will never walk away. We have all walked that lonely road, and don't wish it on anyone. Bendy friends are vital to survival. I think if we didn't have each other our lives would plain horrible.

A year ago, I was just getting a wheel-chair and completely hated the idea of it. It was one more thing to add to the ever growing pile of braces and equipment. It was a reminder that I could no longer do the simple things most people take for granted. I hated everything about it. After talking to one of my best bendy friends about it, I realized that I had a choice. I could look at all my extra luggage and see it as something that is holding me down, or I could look at it as something that I can use with pride. I still hate the fact that I'm needing adaptive goodness, and I still sometimes have trouble accepting it all. There's no way someone can go through this and be excited about it every step of the way. Once I got over my pity for one, I committed to seeing it all differently. Using adaptive goodness essentially lets us participate in life. It lets us do more, conserves our energy and helps with pain, it's exactly what we need. We can use it as a canvas to express ourselves and send a message. It is something we can make our own, and wear with pride. Instead of being reclusive and passive, we are doing and being. Having adaptive goodness doesn't define us, but how we wear it does. We can do the walk of shame (in our cases probably hobble) or we can show the world that just because we're stuck in a body that's falling apart, it doesn't mean we can't truly live. This year, I'm really excited about getting some custom wheels. I know it will do a lot of good things for me, and I'm most definitely not the "poor girl in the wheel-chair".

A year ago, I was freaking out about all the things that I couldn't do anymore. One of the items on that very long list was work. I had been working 2 jobs at a time for years and loving them. I quickly started losing the energy to volunteer or take on the odd care-taking gig. Eventually I had to stop working completely and start relying on everyone else. That was a giant slice of humble pie, let me tell you that. Just recently, I have un-learned equating gainful employment with self-worth. I have learned that there is no clear definition for contribution, and the ones that aren't fiscal are the ones that make us all a better person. If we give back and do what we can, there is more self worth in those acts than a giant pay-cheque.

A year ago, I didn't think I'd ever be able to even adopt and raise my kids because of the whole EDS mess. Once again the universe gave me what I needed at just the right time. At last year's conference, I met a handful of bendy friends who've adopted their kiddos. I've always wanted to be a mum through adoption, and I was so terrified of that being taken away from me as well. I know I won't be able to do things like back-pack through Cambodia or paddle with them, but it doesn't mean they'll never have the opportunity. Now I am hopeful that being a mum is something that can happen, I'll just have to find more ways to adapt. Oh, and someone who's crazy enough to help me raise them.

A year ago I logged an insane amount of hours at appointments, in the ER and getting tests. Life with Dysautonomia began and I finally understood what being chronically sick really meant. Doctors and specialists that I originally had, started to turn me away because they didn't understand it, or thought I was beyond what they could offer. I've never fought with so many doctors in my life. Outside of all those appointments, I spent most of my days in bed. On the days when my symptoms were down to a dull roar, I could drag myself to work and barely managed to do things like grocery shopping. If I made it out of bed and was able to leave the house for 5 minutes, it was considered a good day. I resigned myself to life being that way forever and began to lose interest in everything. After months and months of trouble shooting, ER runs and hospital admissions we finally figured out exactly what my body needs. I began to start feeling better and being able to really live again. I can now say that it's totally possible to come back from a Dysautonomia crash, and riding it out is worth it.

A year ago, I had a pretty incredible 5 year plan, and was bound and determined to make it happen on my own terms despite being sick. EDS and Dysautonomia had other things in mind and wreaked complete havoc on my body. Those plans are still on hold, but now I'm really starting to see why...I needed to accept that I was disabled and sick so I could redefine my new life. I needed to grieve my old life, let it go, and start over again.

A year ago, my family didn't understand EDS and the concept of me being sick. I had a really hard time being around them, it felt so awkward and uncomfortable. I was getting looks and statements of pity, told that I didn't have EDS and was being lazy. I was told to be glad that I was born with it, instead of it just happening. My favourite one was that I had thrown away my money using natural medicine and that doctors were always right. The absolute worst was the constant comparisons between my twin and I. It never ended. To this day, there are still questions about why I "suffer more" but the answer will never change. I think the really big turning point was when the constant trips to the ER started happening, when I got a wheelchair, AFO's, Jerome and I finally gathered the courage to introduce them to this blog. I have learned to speak up when someone says something out of line, or still tries to "help" me when I have clearly expressed that if I need it, I will ask. The one thing that still drives me absolutely insane is that they can't step back to let me do things for myself. There is always insistence that I can't do something because I'll hurt myself, leaving them feeling guilty. News flash!!!! I hurt myself sleeping, injuries can't be avoided. Get over it. I know they have the best intent for me, but what they think is best and what's really best are sometimes two completely different things. Showing them that I'm okay, and that I have my bases covered all the time is what seems to have made the difference. Being banned from the hospital when I'm inpatient probably has something to do with it too. There's no way I could ever put up with it, so they get one phone call a day until they learn to chill out.

A year ago, I didn't think it would be possible to make new friends who would be accepting of me and my EDS. Forget about any relationships, I was certain that no one would be interested in a girl who was sick. I know EDS doesn't define who I am, but I won't deny that it plays a role in absolutely every decision and action I make. I was most terrified that if I made new friends, they'd walk away like almost everyone else, because having a sick friend was to much to handle. I am so glad to say that I was completely wrong. I've made a bunch of really good friends. Friends who haven't walked away despite all the EDS induced craziness. They understand it as much as anyone can, and are always going out of their way to make my life easier. There is no judgment, criticism of how I'm choosing to live, or hard feelings when I have to cancel plans. The best part is that for the first time in my life, I feel like I truly belong. I am with the right people. I have learned to trust again albeit very slowly, understand that people want to help me, and that it's not out of obligation. I've learned that there are guys out there who will see me for me, and all the EDS stuff is a minor detail. It still blows my mind, but that's for another post. The friends in my life now only dish out love, kindness, compassion, respect, honesty, humor and positive thoughts.

As I reflect on my past year and the gong show that it was, I wouldn't change anything about it. This road has most definitely not been easy or fun, but it has been filled with the lessons in life that I desperately needed to learn. When something goes "wrong", I've realized that it's actually going right and there's a reason for it. The most important lesson I've learned is to trust my instincts and not to worry about what the rest of the world is doing. My life appears to be in shambles and despite that, I am happier now than I have ever been. Take that negativity!!

"You have brains in your head.You have feet in your shoes.You can steer yourself in any direction you choose.You're on your own.You know what you know. And YOU are the one who'll decide where to go."

(Dr.Seuss)

GJ-tube drama, and a little monkey

"Dear: Jerome, I dislike your drama and have a brilliant idea to sort of replace you, and the drama. It's big and scary right now, but a thought none the less" -My facebook status this evening.

I guess it's no surprise that there is Jerome/EDS drama, so here it goes.

It's been 2mts and few days post-op and not too much has changed. Jerome is still healing, and the other day was bleeding a bit from the stoma, probably as a result of over-doing it. I still get reflux and feel sick anytime I put anything at all through J. If I have anything at all before I put something through (even two sips of juice) I will puke. The last two days have consisted of puking when there is nothing in my stomach and I'm feeding J. Whatever I put in, comes out and it's getting old.

This whole feeling sick when I ingest the food or liquids in the morning, has been going on since childhood. It's one of the biggest reasons why I hate breakfast. I'd also rather be sleeping instead.My sister has been puking first thing in her morning for years now. Maybe it's my turn ?

Here's what crossed my mind on the subway today. I need input.In theory, if I were to get a Nissen fundoplication it would stop the reflux and the puking. If I got just a plain G-tube (which is possible since I have J already, just a shorter tube) with a Mic-key button, it would be far less maintenance, I could put pureed foods in it, and I wouldn't have a tube hanging from my stomach. If I needed to puke for some reason, I'd have the G-tube. It would basically cut down all the drama, which would be very nice. Keep in mind this is just a thought, and I'm all about quality of life. Waddaya think?

Other than that, everything is good-ish.
School paperwork is coming along, and......Skating is still on the "can do" list :) The climbing gym trips with Monkey had to be replaced, so it's the beach in the summer and skating in the winter. We're more than okay with it.

Tomorrow is officially my last day as an IBI therapist. Thanks EDS.
There are a lot of mixed feelings about it, but right now I'm choosing to be greatful for all the priceless things I've learned and can take with me.

Here's a little video I made of mine and Monkey's day today...

You just gotta, it's plan "C" or bust!

Do you ever have an incredible opportunity that only comes around once, where you want it so bad, but it scares the crap out of you?

I'm in that boat right now. I've got the most amazing and brilliant opportunity to cease, or it's move home with my parents in suburban hell. I want to make this happen, and it's very possible to make it work with EDS. I've essentially got it all figured out, but can't get myself to actually make it happen. I feel stuck and essentially paralyzed by fear.I used to think I was invisible from that part of EDS, stupid me. Instead of doing what I need to do, I'm writing a blog post at 2am.

I'm scared that I'll get everything together, it will all fall into place, then EDS will turn uglier and it won't be able to happen. That's exactly what happened when I applied to a specialized program in England. I got accepted during my interview, and scored a huge scholarship. I had everything I needed to go, with the most important things being passion and drive. EDS got worse, and there was no way I'd physically be able to do the program. I had to give it up. Some people think I just walked away from it, and blamed it on EDS. This was just after I officially got diagnosed and wasn't nearly as bad, but I was quickly falling apart. Instinct told me that EDS wasn't going to stabilize anytime soon, and would get worse. I don't blame or resent anyone for thinking how they did, but when I tell someone about my newest opportunity and they bring up how I chickened out of England....that's not fun. I sure as hell didn't back out because I wanted to stay here, and it really wasn't a choice. I'm terrified of it happening again, I'm tired of having my little world that I worked so hard to create, come crashing down. The irrational and pessimistic part of me is saying "don't even bother", "it's going to happen again", "EDS is bigger than you"...Isn't negative self-talk fantastic?

Apparently I'm sleepwalking again. My room-mate said that instead of just walking around the apartment doing random stupid things, I've managed to leave the house. I wake up with everything exactly where I had left it before I went to sleep , including myself in my bed. Apparently, I managed to throw on a pair of shoes, somehow remembered my keys, walk down a flight of steep stairs and make my way around outside. Now, she didn't actually see me do it, but she heard clomping shoes, she heard me talking to myself, the door open and me go down the stairs. She thought I was just taking another trip to the ER. So, I have absolutely no idea what I did, or where I was. Holy scary Batman! I'm convinced it was house trolls.

I could very well be sleep-walking again. I thought that because I was doing really well in the sleep department (well the sleepwalking and anxiety part) I stopped taking one of my supplements that helped with it. It's expensive and it would have been one less thing I'd have to keep track of. I tend to sleep-walk as a grief-loss response. I'll be unemployed in about two weeks, and leaving one of the greatest jobs on the planet. One of my bendy friends died and I'm coming to terms with the very real possibility of moving home. I just love it when my worst nightmares come true, thanks EDS. I've gotta go back on those supplements but I'm still blaming it on the house trolls.

So on to more positive things....
My plan for the Kangaroo pump has worked out well. *knock on wood*. I've been putting 500mls of my concoction through when I wake up and go to bed, and have been feeling great. I think it's helping prevent crashes during the night, and it definitely kick-starts things in the morning. I throw in my Vega mix through a syringe, and I'm good to go. If I do that, then I usually have a close to normal appetite and can eat throughout the day. If I don't do the mix or Vega, then I'm back to not wanting anything to do with food or liquids. I still choke and aspirate on everything, but I love food too much to completely give it up, and am nowhere near ready.I'm eating peanut butter on celery right now, mmmmmmmmmmmm.

Yesterday, was spent with the Toronto and area bendy posse. It's always nice being in the presence of people who truly get it, where you can ask anything and no one will get freaked out, and where you're "normal". We went hot-tubbing for two glorious hours. Well the three of us who are POTSy, had to switch between the hot-tub and pool quite often and drink a ton of cold water but it was awesome. There's nothing like floating, and having ALL of your joints stay where they belong, not to mention the most wonderful pain relief. Gravity is over-rated. The Tegaderm patches were brilliant, Jerome stayed happy and dry. The epic tape rash wasn't so wonderful, but well worth it.

I know there are a lot of us who are just plain stuck. It sucks, and we all want to move forward. I was introduced to this book this past summer, life was pretty awful, and it really helped me put my head back where I like it. If you see the world like I do, (in terms of beliefs) the book is brilliant, and just might be the thing that motivates you to get back in the game. It's called The Four Agreements, http://www.miguelruiz.com/index.php?p=Books., and yes, I will be reading it before I go to bed and reminding myself what I need to do.

This is where I need to take my own advise...
A lot of people ask how I manage to keep it together and work my way through life with such a positive attitude. Just so you know, it's not easy and not always positive. I just had a nice little melt-down tonight. But, I am living with EDS my way. Not anyone else's way. This is my body, and my life. I've had to fight hard to get to where I am now, and not everything has worked out the way I planned, but I'm still doing it my way. We should all do what works for us, and do it our way. If it feels right, do it. If you're not sure about something, take your time and think about it. If it still doesn't quite feel right, then don't do it. That also goes with dealing with stupid doctors who think they're god. Don't take any crap, you're allowed to fight back and you're allowed to get rid of them if they're not helping. No one has consent to make you inferior, and it's always nice to serve someone like that a piece of humble pie. I guess the most important part, is to be completely honest with yourself, and trust yourself. Have confidence that you know what is right for you....because you do.

P.S. Jerome says "hi" and that he likes vodka.

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!

On loosing a lot...

My new heading picture kind of makes me laugh.

It could be just me but I see EDS written all over it. Some things are more obvious than others, and I wasn't doing anything particularly bendy in it.

Ironically, my bendy friend took it. We were at the Pride parade, this was before the EDS hangover.

To start, I'm pretty much the only one sitting on the ground. Yes, I'll just plunk myself down in the middle of a side walk, or anywhere for that matter. When my legs have had enough, I need to sit or lay down. No shame. The wheels are on their way, soon I won't be needing the ground or a floor so much. Those lovely tan lines on my shoulders are from Leuko-tape two.summers.ago. I can't get rid of them, even with the gross fake'n bake creme. It was the only way I could be out on the water without major consequences. Yes, I know it was a crappy tape-job but I got to the point where I just didn't care anymore. It did the job, and I was more concerned about getting on the water ASAP. I would have had my toe nails painted in a fun colour, but bending over causes my neck to start subluxing; the rubbery fingers don't do well with colouring in the lines either. The ankle braces are just a little bit visible and I kind of like it.

It wasn't too long ago that I had completely lost all hope of anything good in this mess. To be completely honest, I didn't care if I woke up the following morning. I didn't care about anything, and walked around like a zombie for a couple months. There is a lot that's been taken from me in such a short time. These days seem to be a litter easier in dealing with it all, but last night I realized how much I really lost in such a short time. The whole not being able to paddle anymore and needing a wheelchair hit me like a Mac truck. I will say that I've very saddened by it and wish it never had to be like this. I don't know if it's just me, or how people generally look at things we have lost, but it seems like the things that are gone, are the things I treasured most. I loved the jobs I had, there was nothing better than being on the water or just taking my dog for a nice long walk. Being able to walk for myself is currently a big one. I could do simple things like cook and bake from scratch, I could paint my toe nails, and use chopsticks. Bigger things like having to turn down scholarships at a school overseas, and loosing friends has been nothing but horrible. I'm not a material person, but I need to experience my world physically. I look back and as much as I hate EDS and what it's done to me with a passion ,I've come to realize that I have also gained.

I've learned to slow down. Funny enough, it's never worked for me. Slowing down meant stress. I still hate things like yoga, deep breathing, and generally moving slowly. Especially walking...All of those things make me want to jump out of my skin and scream. Hence the Taiko lessons, and bike-riding in traffic that I love so much. I have come to love the following things more than before: chilling in a park with friends on a sunny day, reading, blogging, taking naps in a canoe, didgeridooing,laying in a hammock in the shade, just listening to music or the water in my rock garden.

I've also gained a plan "C" that is looking very possible right now :)
Can't wait to just go back to school and do what I want to do.

The most important thing I've learned on this insane ride is to just chill. We can't make most things happen any faster, or change it. So, we can either get ourselves all worked up over things we can't control or, we can choose to control ourselves and how we respond, save some sanity, and just chill. The latter is starting to work well, funny how it took so long for me to figure it out.
When we chill out, it seems as though everything else does as well. Maybe not, but it makes it easier to handle. Especially the negative junk that comes so easily with EDS. I'm not trying to tell anyone how to live with this, we need to do it our own ways, but this is what's worked for me. Maybe if you're still looking for ideas, this may be one worthy of considering. Cause' you won't know unless you try.

I'm really hoping to not loose anymore than what's been lost already. It would essentially mean loosing my independence and that isn't an option for this girl as I don't plan on being locked in a padded room.

"You can't stop the waves, but you can learn to surf."