Wednesday, June 23, 2010

Thoughts on wheels

After reality had pretty much smacked me in the face, I had to start making things happen in order to make life work for me. I can't really say I'm someone who cares about quantity, I'm all about quality. I'm sure working in the field that I do, has given me a viewpoint that not many people get to see. I play the therapist role at work, but I also understand what it's like to live in a body that doesn't work. This gives me a rather unique perspective, which I am thankful for. It allows me to turn on my therapist brain, look at my situation and find ways to increase my independence and come up with multiple back-up plans to make it work for me. It also has given me resources that I could not otherwise access without a lot of research and work. Those resources are my friends. We work together, and we play together.This means they see the girl who can kick some serious ass at work, and the girl who spends a lot of time in bed and not being able to participate in life. In doing so, they have been able to turn on their therapist brains and give me input that otherwise would not have been possible with any of my doctors.

I'm now in the process of getting some new wheels. It's not the kind that we all wish for, it's a wheel chair. I'm not sure how I feel about the whole thing yet. I'm looking forward to being able to participate in life more, and have something to make life easier with injuries and bad pain days. But really, who looks forward to getting a wheel-chair? I don't think many of us as children or even adults had visions of ourselves in a wheel-chair. Even last year, it wasn't a thought that even crossed my mind. I was at the climbing gym, paddling and being insanely active. I'm going to have to learn how to live with more stares, ignorance and places that aren't accessible. It will require more planning, patience and a positive attitude. What makes me more anxious than anything, are the inevitable times when I'll run into someone I haven't seen for a while. Having to explain EDS and what it does to me gets tiring. Especially when I get told things like "You were fine before, why is this happening now?" No, I wasn't fine before. 14 years ago I was starting my little journey into the world of EDS with many, many bumps along the road. I find myself having a lot less patience for people who think they're doing me a favour by giving me their pity, claims to understand what EDS is like because they sometimes have a sore knee, or unwanted advise like getting some x-rays done. You know, because I never thought of that. It would fix all my problems!! Haha I've had so many x-rays and scans that I'm probably a bit radioactive by now. That's why my toes always glow when I'm somewhere dark. To be honest, I'm just not looking forward to the wheels at all, at least not yet. Yes, it could signify a new beginning,but for now I'm seeing a lot of things ending. Why do transitions have to suck ? I think it's time I invent some kind of extreme wheelchair something or other.

Those are my jumbled thoughts for now, maybe during the night I'll come up with a brilliant plan that involves a hover-chair. Now that would be cool! Writing these posts when I'm a little more coherent would probably make some sense too.

For now, this awesome video will have to suffice.

"Obladi Obladah, life goes on...."
(The Beatles)

Tuesday, June 15, 2010

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)

Tuesday, June 8, 2010

Food, glorious food!!!

This post is going to be all about being able to eat well with dietary restrictions, and loving your food at the same time. Who would have thought?!

I cut out a lot of food, to help with reflux as a result of having EDS and being born 2mts early; with dysphagia and a permanently subluxed jaw thrown into the mix. I’ve had reflux and swallowing issues my whole life.

About three years ago, my mum told me about trying a high-alkaline, low acid diet to help with the reflux. I had been on so many reflux medications and none of them worked. I did the research and gave it a shot. It was a lot of food to cut out at the time, but I was able to find really good substitutes. The diet I follow isn't the diet mentioned above; but I found what I need by process of elimination and re-introduction. If I pretty much avoid the following things, I'm fine...Wheat, meat, corn, dairy, oats, barley, preservatives and some fruit/veg. Also, anything fried or processed. For some reason pastries make me reflux like crazy, even if they don’t contain restricted ingredients. Then there's the list of things I can't eat from having dysphagia, woot!

I cook pretty much all of my food, I don't eat out often and if I do, it's almost always some really delicious ethnic restaurant. I cook simply, I'm single and eat the majority of my meals away from home. EDS has also been a factor in terms of being able to use my hands to cook from scratch. Keep in mind this is coming from a girl who lives in Toronto, has easy access to this stuff and isn’t a picky eater.

TIPS (I know there are a lot but it will make life easier for you)

- Adding lemon slices to your water makes it not only taste better, but the lemons help break down food to deliver the nutrients more effectively. Raspberries or strawberries are also good in lemon water too.

- Try to buy from a bulk store, they generally have a lot of basics that are hard to find and expensive in a grocery store.

- Buying produce from fruit stands is cheaper and offers more variety. You’re also supporting local economy and small businesses

- When you get home, start chopping your veg. I cut everything up one day and store it in containers, using it all throughout the week. This will be more convenient and makes meal prep a breeze, esp. when your body doesn't like you that day.

- The same goes for cooking grains, noodles, rice... cook it all!!!

- Pre-cooking veggie meat is also a good idea

- Have a lot (like an insane amount) of leak-proof containers, that way you're not limited.

- To keep celery crunchy: once it’s cut up, fill the container with water.

- Keep healthy/unrestricted foods around for snacking

- Try substituting spinach for lettuce. Spinach is packed with nutrients whereas lettuce is pretty
much just water.

- Brown rice noodles taste just like regular noodles, they’re softer and are more nutritious.

- Chia seeds are also something that can be added to any meal. They’re full of Omega 3’s, protein and fibre. It can be cooked with things like rice and quinoa easily. When in liquid they turn into little balls like tapioca.

- Sol Cuisine makes really good gluten-free veggie meat products that can be added to any meal

- Always have a snack with you...My best friend is peanut butter and rice/almond crackers. That way it can live in my backpack and I can break out a restriction free snack anytime.

- Don't be afraid to experiment. None of what I make is from a recipe, except the basics that don't need a recipe.

-Don't be afraid to try new foods. Who knows, you might end up loving it and will wonder why you’ve been missing out your entire life!

- Change it up! Eating the same things over and over gets boring really quickly then, you lose motivation to eat what you should.

- Some ethnic foods you just might love : Thai, Ethiopian (my top two favourites), Korean, Japanese, Chinese (real Chinese), Greek, Indian, Middle Eastern and anything else the world has to offer.

- Lastly, don’t use Xanthan Gum as a thickener...It gets too thick and turns into gross-looking slime that coats everything. Adding water to thin it back out, or trying to rinse it off veggies doesn’t work either. Learn from me.


Peanut butter on celery...An awesome classic. It's healthier if you use almond butter or raw peanut butter instead of the yummy Kraft brand.

Cheese and crackers...Another classic. I use Almond Thins rice and nut crackers with goat cheese.

Almost nachos...Almond Thins with a layer of shredded goat cheese, chopped veggies and a dash of hot sauce. Nuke it for about 30 seconds and you're done! Another yummy variation includes using soft goat’s cheese and salsa to dip.

Crackers and/or veggies with hummus or baba-ghanouj is always good.

Fruit salad My favourite combination is mangos and mixed berries.

Peanut butter on a banana. I don't use bread just put a small scoop of PB on the banana before you take each bite. Just think of it as veggies and dip, when you don't have to share and are technically not double-dipping.

Cereal with fruit and almond milk (or any milk substitute) is always good. I add a tsp of chia seeds to get the omega's in too. Mmmmm rice crisp cereal with vanilla almond milk and raspberries is my favourite. I eat it on the subway, and get the "I'm jealous" looks especially in the mornings (Yeah that's right, keep eating that muffin...)

Smoothie-sicles.. it’s just a smoothie in popsicle from.
Throw the following things in the blender:|
- Chunks of your favourite fruit
- 2 tsp’s of chia seeds
- Almond or preferred milk substitute
- Blend, pour into popsicle moulds and freeze.

Peanut butter and banana smoothie
- Throw the following things in the blender:
- 1 banana
- 1 tbsp of peanut butter (or other healthy nut equivilant)
- 1 tsp of chia seeds or 1 tbsp of flax seed oil
- 1.5 cups of almond milk or preferred milk substitute

Meals and Side Dishes

Roasted Sweet Potatoes...So simple, healthy and delicious! This can be added to anything.

- Pre-heat oven to 350 degrees
-Use a large cassrole dish, coat bottom with olive oil.
- Wash and cut up potatoes into 1/4 inch slices
- Throw them in the dish dish, and mix it up to get the oil on top. If you like spice add crushed chillies
- Keep an eye on it, and stir about every 20 min
- Cook until soft, and golden around the edges.

Quinoa is full of protein and contains other deliciousness. It goes well with anything too.
- Cook as per-instructions. I'm lazy and cook it just like rice.
- I eat it in salads, soups, and use it like rice.

Coconut rice is also good with almost anything, and it makes meals less boring.
- I cook it like normal rice, except substituting one part of the water for one part coconut milk
- If you have trouble swallowing, try sushi rice. The shape is more rounded which can help.

Pizza, it's pretty easy to find spelt crusts or alternatives. It is very possible to make the dough from scratch but it's messy, time consuming and hard on the hands. I haven't quite mastered it, without having a funky texture and falling apart. I just use the spelt crusts.
- Don't forget to brush some olive oil on the bottom so it doesn't dry out in the oven.
- I use spaghetti sauce instead of going out and buying pizza sauce, I think it tastes the same.
- I then sprinkle chillies on top of the sauce, then add a thin layer of goat cheese.
- I like to throw on spinach, tomatoes, yellow peppers, mushrooms and pineapple.
- Throw on second layer of cheese and stick it in the oven.
- Cook until the cheese is melted and the bottom is a golden brown.

Best Sandwich Ever!!!
- Toast two slices of Kamut bread (or whatever other bread you want to use)
- Break out the hummus and soft goat cheese, spread one slice with hummus the other goat cheese.
- Throw some spinach, tomato slices and red/yellow pepper slices in the middle.

Grilled Cheese
-Kamut bread
- Block goat cheese
- Goat butter or lactose free margarine
- Do the same as you would for a normal grilled cheese.

Peanut butter and spinach sandwich...It’s full of nutrients and doesn’t taste boring. I won’t bother with the instructions.

Phad Thai!
I never make as good as the restaurants but it's not bad either.
-Cook thick rice noodles the same way as pasta
-Cut up tofu into 1/2 inch chunks, and stir-fry 'em with a little bit of olive oil
-Because I'm lazy.........I totally cheat and use the pre-mixed stuff you can get at the store

- I used the Sol Cuisine veggie ground for my “meat”
- Chop up spinach, and any other veggie you’d want and mix it over low heat with spaghetti sauce (My hands don’t like to make the sauce from scratch anymore, so I buy the organic stuff)
- If you like it spicy add crushed chillies to the sauce when you’re warming it with the veggies
- Serve over brown rice noodles

* This is where all the prep-work comes in very handy, you can have a healthy/delicious meal in about 5-10 minutes*

Mango and Spinach salad

- Cut up a mango into small slices, using desired amount in salad

- Add spinach, chopped red onion and cashews

- Mix balsamic vinegar and a little bit of olive oil for dressing

- You can also add some stir-fried tofu chunks for added protein

- Warmed rice noodles is really good with this

Strawberry and Spinach salad

- Cut up strawberries into quarters

- Add spinach, red onions, mushrooms and yellow pepper

- Mix balsamic vinegar and agave nectar for dressing

- That pre-cooked quinoa, rice noodles or tofu chunks go well in this salad

Quinoa and veggies

- Cut up tomato, yellow peppers, bean sprouts, mushrooms, small pieces of goat cheese and throw in some spinach

- Add desired amount of quinoa (good both hot and cold)

- Mix balsamic vinegar and agave nectar for dressing

- Sol Cuisine T-Ribs are great in this, and you won’t need any dressing

Coconut rice, mandarin and spinach salad

- Heat up some coconut rice (because you are awesome and already pre-made some)

- Cut up desired amount of mandarin oranges into ½ slices

- Add spinach, red onion and cashews or almonds

"Did you ever stop to taste a carrot? Not just eat it, but taste it? You can't taste the beauty and energy of the earth in a Twinkie."
~Astrid Alauda

Tuesday, June 1, 2010

When reality smacks you in the face...

I seem to have gone post-crazy this week. Whatever, it helps me deal with everything that's been thrown at me. Blogging costs so much less than seeing a psychologist. It's also convenient, as most of my posts are written at stupid o'clock in the morning. Hopefully, you are getting something positive out of this too. Even if I'm writing about what some of you are going through, I know it's exhausting and the furthest thing from fun. But, the positive in all of this mess, is that someone truly "gets it". I get it, and so does every other bendy person who reads my crazy rants. For anyone else reading this, thank-you for trying to "get it", it is very much appreciated when you feel like the rest of the world doesn't want to even try.

On top of seeing awesome GP today, I had an appointment to be put back together (literally) with my chiropractor. There is nothing like the feeling of having everything back where it belongs. It's wonderful. We were talking about the insanity of my past couple weeks, and what my body has decided to put me through. Yes, I think my body and I are separate things...forget the whole mind and body connection, there is no connection when you feel like chewed gum only resentment.

To get back on topic... She asked me something that I have been thinking a lot about, but have never really talked about until now. Aren't you lucky?! She wanted to know where I see myself in five and ten years. *insert panic, fear, anger and sadness here* I guess that's what happens when you haven't yet fully accepted life with EDS. I've accepted that I have it, and it won't go away, but definitely have not accepted that it will most likely get worse. I'm not saying it will get worse because there needs to be some optimism and hope in all of this. I will say that I'm having a really hard time accepting the big physical changes that comes with EDS. I've been comparing myself last year to this year. There's a big difference and I don't like it. What I hate most, is that I have absolutely no control over it. That's the biggest thing I'm learning to deal with right now, my lack of control over my body which also means I can't control what will happen to me in life. I keep thinking that if I did this, or if I did that, my body would get better or would plateau and everything would fall into place. Stupid reality.

I was talking with my bendy friend Sama about all of this and she helped put me back in my place. She explained the why's and how's of life with EDS and it all made sense. There are some things only a bendy friend can explain. Some of what we talked about is here, I really suggest checking it out if you're having a hard time like I am.

Where do I see myself in five years...I have no idea. I know that I will most-likely be in a wheel chair because even now, there are days when I would love to have one. I know that I will not be working my jobs that I am now, and that probably any kind of physical activity will be a thing of the past. I see myself being an awesome child-life specialist because I "get it" and being a pro-star advocate for the kiddo's I'd be working with because I've been there. I don't know about relationships, new outlets or even where I'd be living. In ten years, I won't even go there it's too far beyond what I could even imagine. I know where I would love to be in five and ten years but I need to be realistic and find new goals that I can achieve. What I do know for sure, is that I'm going to try my damnedest to make it all work for me. It will require a ton of adaptation, learning how to swallow my pride and ask for help. It's a good thing I'll be able to put my super-power (being stubborn) to good use. The last thing that I know of, is that at the end of the day I will take away something that makes me grow as a person, and that tomorrow isn't far away.

" To fear is one thing. To let fear grab you by the tail and swing you around is another"

(Katherine Peterson)

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)