The simple things are really the finer things

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

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

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

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

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

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

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

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

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

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



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


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


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


Then we stopped for some desserts in the sun.



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


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

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


Nothing better than unwinding at the beach after work.


Happiest feet on the face of the planet.


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

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

It's okay to be okay

This post has come from having old wounds opened, and new ones added to the collection. My stay at the hospital was a nightmare, and yes I will eventually be opening up a can of proverbial whoop-ass. For now, in hopes of being able to get this off my chest and maybe some sleep, I will present you with this.

It seems as though Western medicine has started to catch on to the idea of treating the whole person, and trying to include mental and emotional health into their scope of practice. I think it's a huge step in the right direction, and hopefully it will help change the way patients are treated.

While it is no secret that I have gone the route of natural medicine, and think it's the greatest thing I have done for myself, it may not be so known as to why I made the choice. 13 years ago when I started on the long road of EDS, it began with a dislocating shoulder and all over joint pain. I was referred to two surgeons, put on pain medications and told that it was no big deal. Over the years as more joints started to dislocate, pain become less manageable I ended up seeing more and more doctors. I was told that there was nothing that could be done, that I was making it all up, looking for attention, doing it to myself, blowing it out of proportion, and that I just had to learn to live with it. Nobody could explain why all the treatments I tried were failing, other than that I was sabotaging them and wasting people's time. Awesome, just what I needed.

This lead to my eventual miss-trust in pretty much everyone who practiced Western medicine, and depression. I was thrown on a few different low-grade anti-depressants and I got some anxiety meds for emergencies. The girl who was once happy-go-lucky had turned into a ghost walking around in a shell. If I could use one word to describe that time in life, it would be: numb. As a defense mechanism, I learned to turn off every emotion and not attach myself to anything. Doing that would mean I wouldn't loose anything. If I didn't feel joy, then I wouldn't need to feel sorrow. If I didn't feel optimistic, then I wouldn't feel let down either. I thought for me, that it worked. I could walk through life in a fog, not feeling anything, and eventually things would get sorted. I just needed to wait it out. I was so wrong.

It took a while, and some very honest friends telling me that no, I wasn't okay and I to make some changes. The first thing I did was find a naturalpath. My consult was 1.5 hours, we covered EVERYTHING and the thought of that baffled me. Why hadn't this been done long ago, when the whole EDS mess started? And, why was she the first person who really listened to me? I left her office feeling optimistic, and far less numb. That day, I decided to scrap Western medicine and put a bit of faith into something else. Over the years, holistic medicine has also helped me learn to think differently, which lead me to living differently.

So we'll go back a little bit to where I started. The reason I'm bringing this up, is that all of the doctors and most of the nursing staff at the hospital asked me about how I manage to keep positive. How could I be excited to get a gj-tube put in? Surely, it's not possible for me to be okay with all that's happened. Haha, if they only knew some of it. I had a neurologist consult this week to get the suspected dysautonomia sorted. He kept asking about what life was like before EDS got bad, and how I've handled it over the years. This meant that wounds that just healed, got opened. My psychologist thinks that I have trauma issues, as a result of dealing with all the negativity thrown my way from doctors over the years, and needing to fight for everything.

I won't lie, loosing the ability to do everything you live for is hard. Going to sleep and waking up in pain everyday is hard. Giving up some amazing opportunities, and even girls nights is hard. Feeling like you've been left with nothing is hard. Gaining things that will make life "easier" is hard. I don't think anyone as a child envisioned braces, wheel-chairs, endless doctors appointments and extra tubes sticking out of their bodies when they grew up. Yet, here we are, with varying degrees of disability and regression; with lives that somehow need living. I will be the first to say that going through the grief process, with a condition like this never really ends. It comes in waves, depending on what life throws at us. In the last year I've managed to get over the anger part, and am pretty much through the sadness bit I think. I have my days when I'm so tired of fighting all the time, just to be able to live. I pay insane amounts of money for treatments (which I love and think are totally worth it) to be able to work, have less pain, and possibly slow things down. Those are the days where I stop caring about everything and completely shut down. I isolate myself and just process, it's what I need to do.

Being okay takes a lot of work in being really creative, resourceful, brave,stubborn,patient and having confidence that all will get figured it out. I find ways to make whatever has been thrown at me, work. I've learned not to have any expectations, but to go along for the ride and enjoy it as much as possible. It can mean jumping in with both feet, or taking a step back to think about if something feels right. That's the other thing that has really helped. If it doesn't feel right, then I won't do it but, I will fight for what feels right for me and so should everyone else. It means slowing down, and not taking anything for granted. As a rule for myself, I have to find at least three good things about my day before I go to sleep. There are always good things in each day, no matter how bad the day was. For me, it also means having faith that the universe has my back and that I'll always somehow make it through to the other side even if I have no clue what's in store. Who does anyway?

I have lost pretty much everything, but have gained in so many other ways, that I wouldn't trade my experiences for the world. Those are the things that help shape and push us to go further than we ever could imagine. Sure, the journey is hard and at times just plain horrible, but we can always look back with pride at what we overcame and accomplished. For those of us who are young and were once ready to take on the world, being thrown into the land of EDS has probably knocked our entire lives off kilter. We were forced to grow up and mature quickly. A lot of us facing, or coming to terms with our own mortality. When that happens, everything seems to take on a new definition, with a deeper meaning. We measure life in the little things that make life wonderful, rather than what is quantifiable.

I came to realize, that these are the same lessons that takes almost everyone a lifetime to learn. In a way, I'm glad to have learned these things now, so I can live life to the fullest and not sweat the small stuff. It has essentially saved me a lot of unnecessary pain, wasted time and sweating the over petty things.

Living with something like we do, is far from the norm of most people. When they learn about how we live, with the insane amount of complexities; it's not how they picture living life. It's not what they want for life, and it may just be a bit scary. Think of how it was for us being freshly diagnosed or just starting on this road. I'm sure I wasn't the only one scared shit-less. If someone hasn't even been able to experience the symptoms (although I'm jealous), having to see what EDS can do isn't pretty. Knowing there's nothing that can be done to make this beast of a condition go away, and not having a clue how to help is probably intimidating, even if you're not living it. Maybe the best thing they can think of to help us is to see if we're okay, because it is something, and it's something they can do for us, when everything else is beyond anyone's control. Sometimes, that is the best gift we can get. It doesn't happen often that someone is willing to check in with us mentally and emotionally. Because so much of it is physical, it takes a lot of work to be able to move past that, and get into the the one of the most important aspects in living with the monster we call EDS. (Please correct me if I'm wrong)

This is the little revelation I had over the weekend. I started this post earlier in the week, rather annoyed that I felt it wasn't okay to be okay. Now, I may see why someone may wonder if we're okay and if we are, how the hell we managed.

Some of us are further along this road than others. Some of us are in the thick of it and can't quite see the little spec of light at the end of the tunnel. Some of us have just come out on the other side and are ready to live, laugh, love and fight for what is right for us. Regardless, if we face the things that are haunting us, and don't back down, in time we'll be okay.

I guess all we can say is that, it's okay to be okay and it's awesome. It just takes a lot of work.

"I've got a lot of lemons and am trying to make lemonade. Now, if I could only find the vodka!"
(Tiffany, a fellow bendy friend)

When family can start seeing a chronic condition for what it is, and the person beneath it all

This weekend was Thanksgiving way up here in Canada,eh!
I spent it at my awesome grandma's house with some of my immediate and extended family. I had a good time, but am glad to have things back to normal.

Usually spending time with family has meant overwhelming stress and anxiety. The idea of having everyone take notice and let me know how much worse they think I've gotten is always a blast. The looks of pity when I walk, lay on the floor, have a new brace, or pretty much anything else, isn't fun knowing they're directed at me. I hate having to answer "yeah, I can't do that anymore" to a lot of questions about what would have been a normal part of life, six months ago. I'm glad the visits to the ER didn't come up, and I was able to pretty much avoid the gj-tube conversation. That would have been the last thing I needed...I can just picture the conversation now "I'm getting a feeding tube put in my stomach because eating is a pretty big problem now". This time though, something felt different. Very different, and I liked it.

There was no pity, staring, questioning and insistence that I needed help when I didn't. After the last year of trying to get my family to understand EDS in all of it's glory, but with a positive outlook, I think they are starting to see it like it is. Or, at least like it is for me. It has taken a lot of e-mails filled with information, resources and many phone calls. My family is pretty tight-knit and we keep in touch pretty well. I've always been open and honest about the whole EDS thing, more than willing to answer any questions, and there have been a lot. I guess it's not everyday your niece or daughter ends up having some crazy-rare-genetic-condition. One of the hardest things for me to deal with was the constant comparisons between my twin sister and I. Nobody really understood why our bodies were so different (mine falling apart more than hers) yet genetically we are the same. I know there's been speculation about why it's just me "suffering" and that I might be looking for attention and whatever else. Yeah, furthest thing from the truth. My sister and I live life very differently, and it also means we deal with life differently. Yes, she also has EDS, and yes, she has a lot of the same symptoms and pain issues. No, she's not as open about it as I am, and our symptoms are different as well. This comes from lifestyle differences, and the fact that we've had our own lives for the last 9 years. Oh yeah, minor detail; there are very small genetic variances even with identical twins which mean huge differences to the outside world. A good example of this, would be with a set of identical twins who have different sexual orientations. The nature vs. nurture argument can easily be blown out of the water, the same goes with the EDS thing. Just because we're identical, it doesn't mean that EDS is going to present exactly the same with us. When I was at the conference I met a few people who are twins, and they've experienced the same thing in regards to differences in symptoms. That was so nice to know...I wasn't crazy it was happening to other people who had another half as well. I've always been sure to let everyone know that I don't do pity, I'm independent and it will not change. They are starting to understand that there's not really anything they can do to make symptoms better and that it's a completely different way of life. They know that I'll ask for help when I need it, and that making a big deal out of an ER visit isn't constructive for anyone. What I think it's coming down to is, something along the lines of acceptance, that although my body is broken and falling apart, I am not.

I feel like they are starting to see me for me again, and not the EDS as much. I hope they see the girl who instead of falling apart and giving up, is the girl who despite all the crap, is always finding a way to make something work. We'll take today for example, I was peeling potatoes. My hands are very bendy, which makes everything difficult. I used a peeler that was great for my grip it was nice and wide, but the handle included a little lemon zester. That meant the handle was a bit "sharp" if you have EDS. I quickly found a way to remedy that problem. Next came the task of getting out all the little nobs and little bits. Any normal person would use a paring knife. The idea of holding a wet, slippery potato in one hand and a knife in the other didn't sit too well with me. I had visions of cutting myself a million times to complete a simple task. I ended up using a little melon-baller and it worked perfectly. Both times I had someone say that they could do it, and not to worry about it. I'm glad it gave them opportunities to see how instead of giving up, or not even trying anything won't yield any success. But trying something new, might just work.

My parents are also learning that freaking out about this whole EDS thing, is a complete waste of energy and doesn't get anybody anywhere. They know that there are things I leave out, and that I down-play a lot, but if I'm not loosing it, then they shouldn't either. Hopefully, they see all of this regression is also producing a lot of other opportunities, and that life is super-unpredictable. So we need to ride out the crappy bits, and enjoy the finer things whenever possible. We've had the "I might need to move home if I get worse" conversation, but we've also had the "I'm not tied down to anything anymore, so I'm going to do what I want until I can't" conversation. I know they're crapping themselves over my plan "C", but they know that I'm happy with my plan and can't wait to make it happen. Between both discussions I think we've come to an agreement that with me, living life predictably is over-rated and making long-term plans is a waste of time. So, we deal with life as it comes, and live from one moment to the next. I wouldn't have it any other way.

P.S. My awesome friend Julie (my bendy friend's wife) made this video. Her timing couldn't have been more perfect. You may want to pass it on to your family and friends.

http://www.youtube.com/watch?v=2eINj83djQU

"Life just is. You have to flow with it. Give yourself to the moment, let it happen."

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."

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)

Choosing to out-crazy the crazy.

I often find myself thinking what life would be like if it weren't so crazy and unpredictable. I'm not sure if I'd like it. I don't like stress, anxiety and insomnia just as much as the next person but I also don't do boring. This last week has been crazy and boring with nothing in the middle apparently just the way I like it. My body appears to be a reflection of that. I've been needing some kind of treatment (chiropractic, massage or acupuncture) about every two days for the last 1.5 weeks to keep my body moving forward and myself along for the ride. Thank you subluxed neck. I'm sick and tired of being bendy and tired.

My messed up neck has given me a lot of time to think, which has lead me to be on opposite ends of my emotional spectrum. I'm usually about to drown myself in a puddle of tears or I'm care-free. I prefer the later and that's what I'm trying to focus on. I'll be honest, avoidance sometimes works for me. It's not that I'm trying to avoid letting myself just "be", but rather putting it on hold. I have enough days where I could care less about what happens next, I might as well do something about it when I'm on the up-swing.

After trying to work this week with my neck, I have come to realize that this might be a good time for change. A change from a lot, firstly from work. I love my jobs but can't do them forever. I'm on to plan "C" and filling out the mountain of paperwork required to apply to school as a student with a disability. While at my geneticist appointment earlier this week, the topic of "what next" came up. I have my idea, and know that I'd be good at it but apparently I should be a genetic councilor. No thanks. Yes, experience counts for a lot that is not learned from a book or a lecture but I like being able to finger-paint and play at my job. The world already moves too fast, and we forget to just have fun with no strings attached. How much literature is out there saying that we need to let our creative juices flow, play outside like a kid again and take time to have fun ? There's a ton. Imagine that being a huge part of your job, and being able to share that with a kid who's stuck in a hospital and just needs to be a kid. That's my plan "C" and I can't wait to start. Mainly because I've been at home bored out of my tree and feeling like chewed gum for almost two solid weeks. I've had to let myself be upset about this but I'm trying to see it as a new opportunity and a place to grow.

I failed to mention in my last posts that because of my insane reflux I'm at a high risk for esophageal cancer.yay. Scopes, biopsies and countless appointments are part of this new-ish reality that I was hoping would be rare. Once again, avoidance helps. It helps me to forge my own trail and not look back to often. I know it's something I need to be aware of, but it's not something worth stopping life over, even if the outcome of those tests aren't favourable. Life with EDS can often suck, but I choose to keep moving.

Our bodies are in a constant state of change and most often it's not the good kind. It forces us to either sink, or evolve and swim. I choose to evolve and swim. That means finding new things to keep me happy, inspired and focused. Spending countless hours in bed made me really think about what I would be doing with myself this summer. Kayaking and climbing are of the question, it makes me want to vomit. Those are some of my favourite things in the world. I was inspired, had goals and couldn't have been happier doing them. Now what? Maybe a few more days in bed (which will be sadly happening) will lead me to some more opportunities. Crossing my fingers for something just as exciting.

I've had to go through a change in friends. It hasn't been fun and I wish it didn't have to happen. The reality is, we're on different trails and it has been felt that it should remain that way. The feeling isn't mutual but it's happening for a much greater reason than what I am aware of right now. That's what I'm choosing to think anyway.

A lot of negativity has crept in these past couple of weeks. I can feel it, and it's gross. I don't necessarily think negativity is something horrible but I'm happier with out it. Finding the positives in everyday life with EDS isn't easy. Everything is a choice but negativity doesn't count. It sucks up our ability to see things as a choice and makes us fall victim to pessimism and irrationality. I choose not to be a victim of negativity and see things for what they have the potential to be, not for what they couldn't be.


Just when you think life is crazy enough, something else pops up. I have chosen to out-crazy the crazy and just roll with it.

"Life's like a movie, write your own ending."
(Kermit, the Frog)

The school of hard knocks

I believe it is a fact that we never stop learning.
Our experiences are sometimes wonderful, others are just hard. It can be a lonely road doing it all by yourself, and even lonelier when you feel as if you have the weight of the world on your shoulders. Through it all, we learn and grow. Sometimes, we find our niche and thrive.

Some of my hardest yet, most valuable lessons have taught me to be patient. I had a lot of a certain kind of patience. I teach kids who have autism..I didn't have patience for anything else. I learned that getting stressed or anxious will not get you anywhere. In fact, it makes things worse. We can't change the past, and can't predict the future, so is there really a point in dwelling on something we can't change, or have no control over? We can have an idea of what we think might happen and hope is always something we can hold close. But what happens when our hope and assumptions of what we thought might happen, don't work out like we thought it would? The only thing we can do next is live in the now. Take each moment as it happens, live though it and move on to the next moment. This has taken me a long time to learn. After spending the day at the hospital getting tests, going to consults and all the other fun things involved with EDS, the last thing we want to do is wait for an answer. I found it pretty common among the EDS community, that most of us looked and waited years for an answer. Yes, we just want to know what the dealer will give us in our next hand of cards, so we can have an idea of how to play them. (Hahaha what a cheesy metaphor. As you can tell, I don't play cards.) The fact is, that after those long hospital days, there is nothing more we can do about it other than to just wait. Stress and anxiety won't make the phone ring any earlier. The wait, can be agonizing and torturous. I'm a big fan of keeping busy. I like to sometimes loose myself in a good book, take my bike for a ride, play my didgeridoo and eat ice cream. When the answer does finally come, we usually end up having to change our game plan anyway.

This is when adaping to whatever happens becomes handy. EDS is discustingly unpredictable, and it's the story of my life. Instead of sweating it, I've learned to adapt. There will always be a differnt way to accomplish something. It may not be what we wanted, but new doors will always be open, it's up to us to go through them. I'm the girl who'se suppose to be going to school in England right now for something that I love doing. EDS happened, and it was one of the hardest decisions I've had to make. Giving up something you love, and worked hard for is never easy. I had to change my game plan, and after a lot of searching I've found something worthy of a new persuit. It wasn't what I had originally invisioned, but now it's possible and I want it.

I have Scottish and Irish blood. That gives me an iron liver for drinking, but a horrible temper.
I could go from being care-free to livid in about 5 seconds. Even the thought of EDS would make my blood boil. I would get angry that it has taken so much of my freedom and ability to be spontaneous away. I hated that I could no longer do what I loved, and that I was stuck in a body that hurt all the time. I'm not saying that I don't feel that way anymore; not every day is sunshine and lollipops around here. I learned that anger is a visious cycle. We get angry at our current situation which would seem justifiable. But what can we really get angry at? We can't be angry at our parents for giving us crappy genes, we can't be angry at our bodies and we certainly can't be angry at ourselves for making the choices we did to try and cope with everything. I've learned to sit back and take a minute (or a lot) to think about wether or not it would be worth getting angry over something. Getting angry won't change anything, I think it would make it worse and the most we would get out of it is an adrenaline rush. I will be the first to admit there's nothing like screaming like a three-year old and throwing things. It feels great for that moment, but what happens when you're done screaming and have to clean up whatever you broke? You're back to where you started, angry. Having a good cry can sometimes help, aside from the stupid crying headache afterwards.

Tips on LIVING with EDS

- It's spring time, literally stop to smell the flowers. It's wonderful.

- Go through the 80% off bin at your local Chapters, there are a ton of good books that will be welcomed on days when you're stuck in bed. Don't be afraid to stock-up.

- We all need some kind of outlet. If you've had to give one up because of EDS, don't give up on trying to find a new one. You never know what you'll find.

- Experience sometimes hurts, learning feels great. Blaze your own trail because there will always be another way.

"Finish each day and be done with it. You have done what you could; some blunders and absurities have crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it scerenly and with too high a spirit to be encumbered with your old non-sense." (Ralph Waldo Emerson)