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)

G-tube-a-licious? And other EDS fun

To start, I want to send a big-huge THANK-YOU to my bendy friends for helping me put my head on straight when EDS is getting best of me. Having a psychologist helps, but it's nowhere near talking to other bendy people who really "get it", especially at 2am. What would we ever do without the internet? It makes me laugh that the only people online at 2am are my bendy friends, and last night there were six of us. If any of you are regularly up at stupid o'clock in the morning with the awesome symptoms we have, there's always someone on Facebook.

So I sent an e-mail to the paddle centre explaining that I can't paddle anymore because of EDS. The following morning, they replied and were most excellent about it. They refunded me, no questions asked and still offered to involve me in their bbq's after the evening paddles that I used to be able to participate in. This is the same place that has encouraged me take the kiddo's I teach on the water, worked around the kiddo's needs and wouldn't let me pay for it. So if you're ever in Toronto and looking for something to do, I suggest going for a paddle. http://www.paddletoronto.com

I'm still really struggling with having to give paddling up. Just imagine having to give up the thing that makes you feel whole and the place where you're happiest for a wheelchair. *bangs head on wall* I think the combination of having to give up a lot, coming down from the EDNF conference high, and getting wheels all within a couple weeks of each other hasn't been the greatest thing for this girl.

Okay, on to the g-tube thoughts. Excited?
This is something I've been thinking about for about the last 1.5 years. I have both pharyngeal and esophageal dysphagia, along with some pretty crazy reflux and throw in some TMJ issues for fun. For the reflux, pharmaceuticals haven't helped at all and with natural medicine and diet modification it's gotten a bit better. However, when my hormones are crazy or my suspected dysautonomia is acting up nothing helps. Forget the food, water makes me reflux. The choking, yeah it's a mess. To put it this way, I choke on all foods including liquids. I often block off my airway, or aspirate. This has resulted in pneumonia 4 times. When the hormones are crazy or the "dysautonomia" is in full force, I do nothing but choke or puke, which makes me avoid eating all together. After getting a bunch of tests done and an evaluation by a Speech and Language Path, they said there wasn't really anything the could do. They told me that I needed to get checked every 6 months for esophageal cancer due to the reflux, to avoid eating alone and keep doing what I'm doing. This was pre-neck sublux for the second time and pre-"dysautonomia". So here's my rationale for the g-tube. It will safely provide me with adequate nutrition when reflux and choking are out of control, it's a lot more safe than eating alone and it would ideally help decrease the chances of esophageal cancer if I'm not refluxing from eating orally. It would also give my jaw a break. As an added bonus, I already have training and experience. Waddayathink?

And just for fun, I found this and think you may get a kick out of it! It's kid-friendly virtual surgery!!! http://www.edheads.org/activities/hip2/swf/index.htm how cool is that?!

That's it from this end of the pond, more to come later.

"When life smacks you in the face, smack it back!"

EDS Hang-overs

We'll see how long I can write before this post stops making sense. I've been feeling gross, and the melatonin (my best friend) is kicking in.

This weekend I over-did it. Still learning to take it easy and not really liking it.
Saturday morning I got up to go for a paddle. This came with much excitement and anxiety. I wasn't sure if it was still on the "can do" list. Shortly after getting on the water (like five minutes) I realized that it was no longer on the list of things I can still do. I was hoping I'd get one more summer out of a canoe and go out with a bang like I did last year with kayaking. From the get-go, I could feel the tendons pulling in my arms and wrists. My hands weren't happy with the paddle, they got cramped and my fingers started subluxing. Shoulders started to dislocate and then my hip followed suit. It was really frustrating knowing that I used to easily be able to spend the entire day on the water, in different conditions and now I can't last 20 minutes on flat water. One more thing I have to let go..ugh! The one positive thing that came out of it, is that I can still have some of the most excellent naps in a canoe. There is nothing more relaxing.....nothing.

Sunday, I met with a bendy friend and 4 other friends for the Pride Parade. What could be better than celebrating peace, acceptance and love ? We started with chilling out in a park then migrated to a sushi restaurant. My bendy friend and I both have TMJ issues, and I've got the awesomeness that is dysphagia. I couldn't eat any of the seaweed, and a bunch of other things on the menu. There was also a lot of choking involved. yay. Eating took a lot of effort and energy from both of us, we were tired just from eating. We then walked around for a while finding a good place to stand for the parade. With over 1 million people, sitting wasn't really an option unless you had some wheels. Not to mention, that it was HOT out. The parade was fabulous, in addition to my bendy friend and I being so excited that we lasted as long as we did. Sadly, it wasn't long enough and we had to go find somewhere to sit. After the parade we all went to another park to relax in the shade and cool down. By then, my body had enough. I had a massive headache, everything was dislocating and hurting. Walking was hard, I looked really drunk...Sadly there was no alcohol involved. After a while, we got up and walked around some more. By then my bendy friend hit her threshold and needed to go home. Ten minutes later I was in the same boat.
I stumbled home (literally) feeling like I had been hit by a truck. By then, my headache was killer, and everything hurt more. That's when the puking started. When I over-do it, I don't always realize it because of my insanely high pain tolerance. Instead of feeling pain, I puke... that lasted about 8hrs. 30 hours later, I'm still feeling gross. I've done everything possible to help but I think it's something that I need to just ride out.

I'm getting my wheels sometime this week. I'm not excited that I need it and can't even walk around for the afternoon anymore. I will say looking forward to surviving a night out with the girls, and just participating in life without the EDS hangover.

My bendy friend is also going to the EDNF conference, we're really looking forward to it. Just imagine, a whole bunch of people just like you where you're "normal"...Can't wait, T-8 days!!

" I bet if we drink enough we would start walking like we're sober"
(From a conversation I had with a fellow bendy)

Empowerment, just learning and growning.

"Don't regret, just learn and grow."
Those are words that I try to live by, I find then empowering. I've had to start wheel-chair shopping and I can't say it's been much fun. I know that by using some wheels for places where I would be out walking a lot, it would save me a lot of energy, and would reduce injuries. It would also help with big injuries, and days when I'd be feeling like chewed gum.

I think we all wonder what our bodies would be like if we hadn't done this, that or the other thing. Would we have saved ourselves from more injuries, surgeries and pain?
Do you know what? No one knows.

Since I'm a big fan of trying to see everything as a choice, here's how I look at it. Living with EDS makes us question everything, we constantly plan ahead and constantly adapt those plans. That's just the way it is. Even with that said, we still have a choice. We may try to compare risks and benefits, and probably often think about what kind of injuries we could acquire. In the end, we still always make a choice.

I choose not to always go out with the girls, or do something that requires a lot of walking around. It always results in needing to take the weekend to recover (even if there isn't alcohol involved) and I feel like I missed out on life when I'm stuck in bed. I do choose to ride my bike, it's something that makes me very happy, it's healthy and it's freedom. Those are things that empower me. I haven't gotten any injuries from it *knock on wood* and feel great afterwords.

I choose not to eat food that makes me feel sick (most of the time). I choose to participate in activities and work that will probably result in an injury. Why?
To put it this way, I don't want to look back on life and regret not taking advantage of those opportunities. What if we took them on and stayed fine? What if we didn't take them and ended up in worse shape? We just don't know, and there's no way to know. Well, unless it's something like skydiving without a parachute.

I had to give up kayaking last summer and this summer will probably be the last summer of canoeing. I've been paddling with dislocating shoulders for the last 7 years. Was it a good idea ? Sure it was! I've had an innumerable amount of priceless experiences, none of which I would trade for a million dollars. Who else can say they've taken a canoe on the subway, paddled down the river just off the subway station, into white-water and then to calm water on the lake while watching an air-show over-head ? There's also nothing else like throwing your camping gear in a canoe and paddling into the middle of no-where, just you, your friends and nature. I've never had any big injuries from paddling, no more than sore tight muscles and the odd dislocation. That was until last summer, but still no regrets.

Do I regret going to the climbing gym even though it was probably one of the worst things for me? Not one bit. I saw it as an opportunity to test limits, and see how far I could push myself.
I also know that I need to call it quits for myself, when I feel like it's time. I always know that I tried as hard as I could to keep going, and had a blast doing it. When it hurts too much and stops being fun, then I walk away.

When I started with Taiko, a lot of people thought it wasn't a good idea. They thought I would hurt myself even more, and that I would be setting myself up for disappointment. I've had to adapt a few things, and will need to keep changing things up to make it work for me. I have loved every second of Taiko and will keep playing until I can't do it anymore just like everything else.

Here's something else to chew on...I think a lot of the time, one of the big things we consider when making a decision is how disappointed we could be. We get hung up on a negative that doesn't yet exist. When something "bad" happens we say "I knew this wasn't a good idea", "I shouldn't have done this", "What was I thinking?". When these things happen, how often do we think "I will definitely learn from this", "Next time, I will try to do (blank) instead" or do we just laugh at it knowing we will find it funny later on. Probably not too often. I used to think that it wasn't about setting myself up for disappointment, but that I would expect something "bad" to happen and thus be "prepared". Not the world's most brilliant idea for this girl. Very slowly I learned that yes, there was a chance that things wouldn't work out the way I wanted, and that the experience might not be a pleasant one. But I know that I always learn from it, and take away something new each time. Who am I kidding, that's how life goes. We can plan all we want and it will never work out that way. Those unplanned, unwanted experiences are the ones that make us grow and become wise beyond our years. I think we need to be like kids again, and get excited more often. Children don't make decisions with anticipation of something bad happening. They still see the possibility in everything and get excited about what could happen. They live in the moment and have the creativity to adapt and make something "bad" into something fun.

With all of that said, even though I'm getting a set of wheels and can't do nearly half of what I could do last year, I don't regret anything. If I go to bed with an injury, I still know that I tried and found out for myself that it might not have been a great idea. I didn't go to bed wondering if I could have done something and missed out. I don't regret, I just learn and grow.

" Be curious always! For knowledge will not acquire you; you must acquire it."

(Sudie Back)