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)

Doule-Sick burger with a side of fries

This post doesn't have any specific direction, so I hope you can tolerate my nonsense. Here we go...

Since my last post I have been awesome enough to choke and aspirate on something. I don't know exactly what it was (other than food) because I choke on everything. Anyway, I'm pretty sure I had some kind of pneumonia starting up. I got the usual symptoms and as an added bonus: dysautonomia wanted in on the fun too. That meant, I spent 1.5 weeks walking the line between being able to kick it myself, and ending up in the hospital. I had been hooked up to my Joey-pump for the usual amount of time, but my body was in major over-response mode, and the usual 9hrs wasn't enough. I ended up needing to be hooked up for about 21 hours at a time. I hate the sound of anything mechanical,electronic or white noise when I'm sleeping. I can deal with anything else though. The Joey-pump was annoying to say the least. Never mind needing to get up and use the washroom, re-fill the fluids concoction every couple of hours and wake up to the occasional alarm. It was everything I wanted to avoid when I originally got the pump. yay. I tried to avoid it, but there was no way that was happening, because I'd wake up feeling like a complete zombie. Then, it would take me forever to get the energy to actually get myself hooked up and sorted out.

This was my first time being sick (with something that wasn't dysautonomia) since getting sick, so I had no idea what I was in for. I got pretty nervous in the beginning because I had been feeling good before and was getting what I though was enough fluids. After checking it out with my bendy friends on Facebook, I realized that this over-response stuff was normal. Getting even more sick will make dysautonomia go crazy...Strangely enough, a lot of us have been slammed lately. It all seems to happen at the same time, it's got be the moon but more likely the season change. I've been able to stay away from the ER and have avoided antibiotics. I had resisted it because just before that, I was on them for infected Jerome. I also kicked this aspiration/pneumonia thing last time without anything so I wanted to try it again. So far, so good...As much as this has sucked, I know that I can feel good again. I just have to listen to my body and ride this thing out. It's happening, just slowly...



Thankfully I've had this stuff, and some treatments to help me along (or do most of the work).
Dear: ER, I've avoided you again...buhahahaha!


I sometimes do stupid things when I'm brain-foggy... Things like this:
Can't a girl just have some tomato soup?! Epic Fail!!!


This week I also got some splints for my hands and wrists :)
I'm so excited at the thought of being able to put my hands in my pockets without subluxing them, or using my fingers without them doing nothing but bend.
I had to take a Sharpie marker to them, there's no way I can wear plain splints and braces. I put on the words that keep me going. It's derived from a Japanese proverb that says " Fall seven times, stand up eight."

Being sick again has given me a lot of time to process. I've needed to do it, and have been avoiding it like the plague. I haven't really thought a lot about my last year, maybe it's because everything has happened so fast, there hasn't been time to think. Now it's all hitting me like a ton of bricks and I'm trying to face it, but it's not fun. In the last year, I've lost my jobs from being sick and too bendable. I've ended up with AFO's, a wheel-chair, a feeding-tube, a pump and splints. I've spent the last 10 months mostly in bed and have had to face a lot of really scary things. Most of which, I don't ever talk about. I've lost friends who don't understand how bad EDS and dysautonomia can be, or who can't deal with me being this way. I get looks of pity or sadness, which drives me crazy. I don't think when I get looked at that way, the person doing it realizes how much that shit hurts, and it's the last thing someone in my shoes needs. None of that stuff does much good for building trust either.

I've pretty much lost everything that I loved and lived for. Nothing is simple anymore, I can't do anything without thinking about the consequences my body will dish out. I have to prepare for it all. My entire life has been consumed by this, and it's not a choice.

I do have the choice to make something of it though. That's where I'm trying to focus all of my energy. I've had to remove and protect myself from the things that bring me down, and really evaluate how I want to live. I have learned to accept that I will always have EDS and will always be sick. Nobody else is stuck in this body, or can fully understand the gravity of what it's like unless they're bendy, or I've trusted them enough to tell them. Even though I've lost pretty much everything, I'm happier now that I have ever been. I've learned what I need and don't need in life, and found my niche. I also found out for myself, where I fit within the grand scheme of things. This ride has been the furthest thing from easy, at times seemed impossible. The universe has always come through with truly incredible things. No matter how small or insignificant they may seem to everyone else, they are what keeps me going.

I am finally at peace, and I wouldn't trade it for the world.

"I like nonsense, it wakes up the brain-cells."
(Dr.Seuss)

Embracing life and kicking ass! Or at least trying to...

Wow, the title sounds like some kind of cheesy motivational speaker's infomercial. I thought I'd pass on the most important lessons I've learned on this adventure. I'd like to thank my endorphins, and fluids concoction for this post. I'm feeling particularly good and happy right now so we'll see where this goes. I also hope this doesn't come off as too preachy, because that would be awful.

The first thing someone needs to know about EDS is that living with it is hard. Very hard. It has this amazing power to take everything away from us, and replace it with infinite hardships. It sucks in so many ways, it is painful in so many ways, and exhausting in every possible way. A lot of times, it's all we can do to make it through the day and night, with hope that tomorrow is a better one.

This is where we have a choice. We can choose to lay-down (not literally) and let all the not so good things in life take us over, or we can choose to stay standing and kick ass! I'm sure you know what I almost always choose. This train of thought wasn't always there for me, and there are still sometimes where I will lay down. Although, not for long. It took me a really long time to go through the depression fun that we all go through with this condition or with whatever else happens in life. Slowly, I started to come out of my huge funk and realize that I had a choice. EDS won't ever stop or get better, and there's nothing anyone can do about it. So, I have to accept it for what it is, and make something of it, or suffer more than I have to until I die.

I know when you're going through hell it's next to impossible to see things as a choice. Really, none of us ever choose to go through all that for fun, it happens to us. When life happens, it sucks and we want it to be over ASAP without making anymore compromises. Sadly, that doesn't happen often either. This is where we frequently start freaking out and getting really anxious. Who wouldn't ? Here's the catch, freaking out and worrying won't get us anywhere. So, chill out.

We have no idea what will happen, but we can choose to grab the anxiety, fear, anger, or whatever it is, and change it into something good. We can change it into something we want. It takes a lot of work to be patient, and see opportunities when you're in the thick of it, but it's totally worth it. We also need faith, trust and fairy dust (Peter Pan) . Maybe not all of those, but we need to trust ourselves. Don't ever doubt yourself, you know what's right for you and that's what we should all be striving for. Don't give in to what other people think or say about how you're living your life...it's yours. Unless it's destructive, you know what I'm getting at.

Once you have chilled out, having been patient enough to see opportunities present themselves, and maybe, found that something in there that's right for you; then, there's one last choice to make... Are you going to go for it? It's a simple yes/no question, but not so simple when it's something crazy and big. If it feels right to you, then it should be a yes. If it's a no, maybe put it on the back-burner and go back to the drawing board. But, this is very important...don't let it go, just put it away because you might need it later. So, back to the yes part... If you're feeling good about it, and are getting over-whelmed at what could be a potentially huge under-taking, chill out. Break it down into as many little bits as you need, and check things off the list as you go. Remember, keep your eye on the prize!

If your original game plan doesn't work out, make a new one. Who says you've got to stop working at it? It just means you need to find a new way to do it, that's all. Here's where you probably want to punch me in the face. I'd want to punch myself in the face too, if I didn't know that finding a new way has been my driving force in this mess we call life. What you're dealing with may be the hardest thing on earth for you, and it would feel really awful if your new game plan didn't work. There's nothing like finally finding something that could work, getting up the courage and motivation to do it, and it blows up in your face. It's awesome. No, it totally sucks!

But when it comes down to it, there's still simplicity in it all. It didn't work, are you doing to do something about it, or lay down ? You could lay down for a little bit, get the energy to re-group, and start again. Sometimes that's exactly what we need, so don't be afraid to do it.

I should eat Reeces' cups every time I write a post, I'm on a roll...Chocolate and peanut-butter is one of the best combinations ever! The choking is so worth it.

Ahem...back to the post. After you've gotten over your latest plan not working, it's important to not regret, but learn from it and grow. We can't change anything about the past, but we can learn from it, make a new plan and use the whole experience to help us grow. Don't be afraid to get creative, because it's often where we find the thing that works. Corny, I know. When this happens, I like to tell myself that I'm acquiring wisdom. Sometimes it's convincing. Repeat this entire cycle until you find what works for you. It could take anywhere from 1-100 attempts, and along the way you will surprise yourself.

When you've finally found what works for you, you will look back and either laugh, cry or wonder how you made it through. My best advise for this, would be to take a deep breath, be thankful and let your confidence grow because you will undoubtedly go through this all over again, a lot.

The most important thing to remember is to always have fun and find the positives. Fun is very important and so over-looked. Every single one of us has to navigate our way through this world, which sadly is filled with negativity and repression. Really, who doesn't like having fun ? Who said when we grew up, that it all had to stop? Nobody...society tells us that. When we have fun, we're allowed to be ourselves, and find some enjoyment in a time that is really difficult and heaven forbid, it releases endorphins and we get a dose of much needed happy. So, do whatever it is that turns your crank. For me, it can be anything from finger-painting, to a night of recklessness with friends. Singing at the top of your lungs is always a good one too. Who doesn't like doing that?

As for finding the positives, it is vital to your survival. Yes, I said vital. There's nothing worse than feeling like the world has ended and there's nothing left. Did you know, that once you scratch the surface of finding the good things, you will find a lot ? There's always something good in the hard things life throws at us, it's just cleverly disguised as what we call hard work. Choosing to find the good things isn't always easy, but once we've grasped it, we have hope and a renewed confidence that in time, we'll find a way and figure it out. Even the smallest, most silly sounding positive thing counts. These little positives add up and all count for something far greater than any negativity.

Finally, know that once you've found what works for you, you don't need permission to be awesome at it. Be yourself and you will see the awesomeness that's in you just waiting to get out. We all have it in us. Take your choices in life and make them yours. Hold yourself accountable for your decisions knowing that it was you who made the choices. It's going to be you who makes things turn out the way you want when presented with what we'll call opportunities. We can't choose what happens in life, but we can choose to make something of it, and kick ass!

"Happiness is not about what happens to you, but how you choose to respond to what happens. That's why it's called happiness, not happenness. Though, it could always be called hope-ness. You must always leave room for hope that all happened for a good cause."
(How to be Happy Dammit!)

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.

Because it's important....

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

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."

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)

That's how I roll

I just found something new to add to my "Can Do" list, and couldn't be more excited.
Taiko drumming. Yeah, those really huge Japanese drums...that's my newest thing and I love every second of it. Who doesn't like banging on a huge drum?

I sometimes wake up in the morning and wonder what life will throw at me that day. EDS is a careful balancing act with constantly changing variables thrown into the mix. We have little choice other than to accept it, adapt and make it work.

Firstly being honest about everything and accepting it, is what has allowed me to find things that work. Being honest with myself has been the most important thing. I had to learn to really listen to my body and follow it's lead. My pain tolerance is ridiculously high and trying push through it, will not always make things worth it. I've had to change expectations of myself and what I could still do without major consequences. That ranged from choosing to stay up an extra couple hours at night to choosing not to have my own children. I've also chosen to be completely upfront and honest with my employers about EDS as well. It took some guts and a leap of faith, but I have been lucky to have employers who really try to understand and accommodate me as much as possible. I think part of that success has come from them knowing that I work hard at making things work for myself, and trying to be flexible with them as well. EDS has also messed me up the head . I knew that it wasn't something I could work out for myself and needed to get help. After avoiding it like the plague, and having a harder time with it as the days went on,I finally went and got help. Being miss independent wasn't working for me and I just had to accept it.

Finding things that work for my hands hasn't been overly horrible and I'd like to keep it that way. I don't wear too many clothes with buttons, zippers or snaps because it slows my old-man hands down. I use a rubbery/sticky sheet of plastic (cut to 4"x4" pieces) to help me open jars/containers or hold on to things. I use a lot of Nalgene (http://www.nalgene-outdoor.com) containers and dishes because they're virtually indestructible and I'm constantly dropping them. I use a pen/pencil grip for writing, so fingers won't bend so much or sublux. It also helps decrease the intensity and duration of writing cramps. Keeping my hands warm is key. If they're cold, they just won't work. My bendy friend Sama did a great You-Tube post on writing tools http://www.youtube.com/watch?v=UvqJLW1IXpA

Keeping warm has been key for me. If I get cold, my joints feel like they're being crushed together, then the rest of my body feels like it's being gnawed on by big invisible jaws. In the winter I walk around the house wearing polar fleece pants/hoodies and wool slippers. I have polar fleece bed sheets (sooooooo comfortable) and put two heating pads in my bed that have an automatic shut off. I take really hot showers/baths and don't let my hair air dry. If I catch a chill, then I pay for it, for the next 2-3 days. When at work, or anywhere else I wear wool socks, long-johns under my pants and usually a sweater with a layer underneath. My coat is a combination of two coats. The inside layer is a wool/polyester jacket from the MEC which keeps in the warmth and is breathe able. The outer layer is a raincoat from the MEC that is waterproof and wind resistant. With that combination I don't get wet or cold.

I'm pretty sure you know by now that using natural medicine has been the best decision I've ever made. I take a bunch of supplements and vitamins (msg. me if you want the list) , use natural balms for sore muscles/joints, get acupuncture, massage and chiropractic treatments. I cut out a lot of foods, caffeine, preservatives and any other chemical grossness.
This link is full of info. on the subject: www.ukiahclinic.com

Instead of going through life at warp speed I learned to slow down. It definitely wasn't easy, it was a long road and I'm still working on it.The thing that makes me the happiest is being outside. I know I can't paddle, hike or play contact sports anymore but I can still take short walks, and literally stop to smell the flowers. Now I can stop to feel and smell the leaves on the trees, I can watch the shadows from the leaves dancing in the wind, I can take a deep breath and just enjoy it for what it is. I can sit in the warm sun on my balcony and read or take a nap. Best of all, I can play my didgeridoo. I've always hated yoga and any kind of breathing exercises. They were the most boring thing on the planet, so boring that it used to stress me out. With my didgeridoo, I'm getting all the benefits of the breathing exercises but it's disguised and I fall for it every time. I end up relaxing, zoning out and getting completely distracted from pain. It's also very possible to play a didgeridoo laying down. Some of my best times playing the doo' is when I'm stuck in bed and tired of reading.

When I can anticipate a bad EDS day, I do it my way.Last month ,I had simple GI day surgery. We all know it's not so simple when you've got EDS. I knew I'd be feeling like crap as soon as I woke up. I had to fast the night before, be up early (mornings don't work well for this girl, they hurt) and have to deal with a whole slough of doctors who had no idea what EDS was. Not to mention the whole pre. & post-op bit. After trying local anesthetics 5 times they gave in and sedated me. It was wonderful. I had an awesome nap and didn't feel a thing. Upon coming home, I felt like I was hit by a truck. Luckily I had done a pre-emptive strike and was ready to make it work for me. I had a bucket of vanilla ice cream, a variety of pop and a frosted glass ready for a ice cream float. After polishing off that delicious float, I took some Po-chic (Chinese medicine for upset stomach), grabbed a hot shower and crashed in bed for a nap. A couple hours later, I woke up ready for an acupuncture treatment which is about a 30 second walk from my front door. That's right, I made my crappy surgery day work for me! What could be better than coming home to an ice cream float, hot shower, nap then acupuncture?

Tips on LIVING with EDS

Don't be afraid to try new things. Something may not work one way, but who says it can't work another way?

Be honest. It's not always easy but it makes life a lot easier when you're not trying to convince yourself of something else.

If you're having surgery, plan ahead to surround yourself with everything you like when you get home. Recovery is so much more pleasant that way.

Don't ever stop trying to make it work for you. Lift your chin up, and keep going.

"Do what you can, with what you have, where you are."

(Theodore Roesvelt)