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)

When OT's do the impossible, the good kind.

In between the gong-show that has been life with EDS, there have been some pretty incredible victories of sorts.

After making all the adaptive goodness for my hands, my OT wanted to know what else we could come up with. The one thing that is almost impossible for an EDSer to get is a neck-brace that fits properly, and doesn't make for more TMJ issues. So, we went for it.

I realize that I walk the line of being out of mostly everyone's scope of practice. I'm their first patient with EDS, and when you present someone with a disorder that is complicated and wildly unpredictable it's a huge challenge. Instead of us who were diagnosed and have had time to research and experience it, our doctors, specialists and everyone else gets the EDS bomb-shell dropped on their laps. Aren't they lucky?

We had to take a good look at the how's and why's of using a brace instead of surgery right now, and all of the factors that would need to be taken into consideration.

After a few attempts and many adjustments we figured it out. We still have a little bit of tweaking to do, but my new neck is incredible. It wasn't much help that I haven't been feeling the greatest with the dysautonomia, so I had some major brain-fog and a killer headache. I've been pretty hypo-sensitive with some kinds of pain lately, which has resulted in a lack of hunger and some burns. I hadn't eaten in about 20 hours, which only contributed to the problem. Luckily, with my fluids concoction the blood-pressure drops,tachycardia and obviously hydration have been okay. My ability to give feedback and carry a fluid conversation without going off into la-la land was a bit hampered. It's better than the times when I can't even finish a thought.

If it weren't for the brilliance of the OT's, a neck brace that fit ME wouldn't have been possible. The fact that my head can be supported without some major TMJ pain is incredible. EDSer's have to choose if we want to keep a killer headache/migraine or put up with TMJ pain/headache. Either way, there's still pain. Going without a brace and laying in bed is quite often what we end up doing. Today,we found a way around all of that. Today, my quality of life improved and I have one less big problem to worry about. I can use that energy towards something else that will push me further in the direction I want to go, so I can contribute to the world.

I think since it's such a huge piece of adaptive goodness, it needs some kind of a name. I don't want it to be totally off the wall (as if Jerome isn't...) but something that's easy to remember. Any suggestions are welcomed.

Without further adieu, here is my most brilliant piece of adaptive goodness that is currently nameless. Don't worry I'll also be finding a way to bling it up too!


It doesn't mess with my jaw, supports my head and neck, and is COMFORTABLE. I can also eat with it on.

I will take arm-pit rash any-day over more killer headache/TMJ pain.


Yep, there's a little pillow at the back. It was the only way we could get it to fit without restricting my airway and still be comfortable. The little pillow is fastened on with Velcro and is just batting with a sleeve. The other pro is that I can take out the pillow and throw an ice-pack in there when needed.



This is what happens when it's a beautiful sunny day, and studying isn't all that exciting.

Sunshine and flowers make any day better.


My poor OT is probably going to be harassed from bendy's looking for some adaptive head/neck goodness. There will be line-ups outside her door. That's what happens when you do the impossible.

When the world says "Give up", hope whispers "Try it one more time".

Coming back to life, it's totally possible.

I have about 5 posts that are half-written. I can't seem to spit out what I want these days, or it could also be that there's so much going on. A lot of changes have been happening, most of them really good.

I've been able to sit out in the sun and do my readings/study for school and it's been fantastic. I've also been meeting with my OT a lot, and we've been making some pretty cool writing tools. Still working out the kinks as to what works best, but I think it's also a day to day thing because our bendy bodies change so much, even throughout the day. The biggest news is that my dysautonomia has gotten so much better. I've stayed away from the ER for 3 months now, which is a new record.

Check out the video, it will explain more.



Now, this is not to say that I've been "cured" or anything from dysautonomia, but the symptoms are being managed and we've found what works. That in itself, is worthy of celebration in my eyes. Considering I lost a year and pretty much everything else in my life, I am beyond elated at the progress and now stability. It's so nice to be able to focus my energy on what I want, instead of just surviving.

I hope you can all find something that works for you, where you can feel good in every possible way. There's nothing like coming back to life...nothing....

p.s. Jerome 2.0 says "Hi". I still can't lay on my stomach and because of my awesome proprioception, high pain tolerance and poor wound healing, I keep hurting myself. It doesn't help that last week someone caught their bags on my tubing and yanked it out while I was going down the stairs. Here's to hoping Jerome fully heals soon. I'd like to be comfortable again as it's been almost a month, but it took forever to heal before so I'm not surprised.

"Develop an attitude of gratitude, and give thanks for everything that happens for you, knowing that every step is a step toward achieving something bigger and better than your current situation."
(Brian Tracy)

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)

So close I can taste it

To be feeling human again, I'm so close.
It's been nice to be able to play my didgeridoo and sing at the top of my lungs again.

Although the last two weeks have been nothing but miserable, my recovery from the neck sublux has been rather quick. I had to wear my c-collar for about a week and a half, and it took about 8 days for the migraine to leave. For me, that's a new record. The previous two subluxes have taken more time to recover both lasting about 3 weeks. My neck is still crunchy and the muscles in my back and neck get tight but that's about it. Things are still a little unstable but it's gotten to the point that wearing the c-collar is uncomfortable (which is a good sign) and I'll take it.

As for the dysautonomia, things are progressing, just very slowly. I'm now able to eat and hold down a meal's worth of food and a snack for the day. I won't say it's easy to eat, because it's not. I get hungry but dread eating because I still feel gross after putting anything in my stomach. At least I can keep it down with only a bit of a struggle. That's huge considering I'd go 24 hours without food before I'd realize that I hadn't eaten. I never thought in a million years that I'd have to make myself eat, I love food. For the first time I think I fully understood what it was like to look at a plate of food, feel the need to cry. Yep, food can be overwhelming....weird eh? Knowing your favourite thing is sitting there waiting to be eaten, and all you can think of is how you're not the least bit hungry, even though it's been over 12 hours since you last put anything in your mouth. Or, how you know eating anything will make you want to barf no matter how good it tastes. Lastly, how consuming a normal portion of food seems like an insurmountable task with some major consequences.

My eyes have always been bigger than my stomach, but now it's become very apparent. On two occasions, I've gone out for Thai. Mmmmmmm my favourite thing in the world. I figured it would be a good motivator which it was, kind of. I'd order the usual spicy coconut soup (it's soooo good) and a main dish. Well, I can down most of the soup and about 8 bites of whatever else and that's it. After that, the thought of eating any more churns my stomach, but it's soooo good. The added bonus in all of this is that my grocery bill is a lot lower and I've got less dishes to wash.

In other dysautonomianess, my heart still likes to go all over the place, I still get the occasional bout of spins, feeling faint or like I need to jump out of my skin. The good thing is, that I don't feel like death anymore and haven't dragged my body from the couch to bed and back in a few days. My naturalpath suggested trying a greens vitamins powder mix to at least keep my body going with that. It tastes pretty gross, and mixing it with juice is a must, but my body was very happy to have some vitamins. I know that if I don't eat enough fruit or veg. my body starts to turn on me, I feel gross, get very cranky and will demand vegetables at any cost. Strange, I know.... That greens mix is currently my best friend. It also dissolves pretty well which will be nice for when I finally get the gj-tube.

Speaking of which... I called the GI specialist's after the 3rd ER visit to see what they could do. They've already got the ball rolling, and I've got a consult with the anesthesiologist soon (no actual date yet) then they can go ahead and put the tube in. In a sick and twisted way, I'm so excited to get it in, it will make life so much easier. I feel like a kid in a toy store, with thoughts of not having to chew up and swallow anything that tastes gross. I can just put it through the tube!

T-8 days until I get my new "legs" or rather AFO's!!! I'm really excited to be able to walk and stand with everything in it's place and not stretching the crap out of the tendons and ligaments. The only thing that makes me a little nervous is having to adjust to another brace, and dealing with even more gawkers, or people who will feel the need to tell me that jesus loves me or some crap like that. Ya know, cause I'm the poor disabled girl. I know they have the best intentions at hand, but doing that is ignorant and rude. I'm sure they'd be offended if I told them my pretty liberal thoughts about the world. I bet if I were a visible minority, nobody would say anything like that to me. I guess the other thing I'm not excited about is having to look in the mirror for the first time with the AFO's on and get a smack in the face with reality, knowing that it's not something temporary like all my other braces . Just another piece in the acceptance puzzle I guess. Getting rid of my current shoes, and having to find some new ones wont' be fun either. Options are already limited, so trying to find something that will work with huge hunks of plastic and metal will be a major undertaking. I've got some friends who said they'd come find shoes with me which is most awesome of them. I just hope I don't have a melt-down in the store when I see a pair that I love but can't wear anymore. The stupidest things set me off.

I'll just throw this in here, because it's rather interesting. One of my friends who worked with me, just got diagnosed with Loeys Dietz Syndrome. When we were working together, we both knew something funky was going on with our bodies and it strangely ended up that we both have a connective tissue disorder. This is what kind of makes me laugh. The odds of having a EDS III are 1/5,000-20,000. The odds of getting stuck my lightening are 1/6,250. Seriously?! I got the idea for this statistic from watching Grey's last week with my bendy friend. One of the characters pulled out the stat. of getting struck my lightening, we both looked at each-other and laughed. I looked into it and yes, the odds of getting struck by lightening could potentially be higher than ending up with EDS type 3.

" When written in Chinese, the word "crisis" is composed of two characters. One represents danger, the other opportunity."

In All Honesty

This is a long and honest post, I hope you’ve got a drink and some time.

In all honesty, I'm so done with EDS, I've had enough and don't want to play anymore.
I hate cold and rainy days. This is why.............
Those are generally the days when I feel both physically and emotionally exhausted.
The combination of cold and rain is always killer. It feels like my bones are being mashed together and I'm being chewed on by some big invisible jaws. It doesn't seem to matter if I get 3 hours of sleep or 11 hours, it all feels the same. There's not much that can relieve the pain other than heat, sleep and acupuncture. The clock seems to tick at a much slower pace, most likely because I'm counting down the minutes until I might be able to get some relief.
Sleep is often hard to come by, everything hurts and nothing feels remotely close to comfortable; it doesn't matter how tired I am. If I do get relief, it is often temporary but enough to allow sleep. A lot of these days are spent in bed, when I could be working and doing things I love.

For the most part, I think I deal fairly well with this whole EDS thing. On the cold and rainy days, not so much. It reminds me of how much I really hate EDS. I hate how complicated it makes everything. I'm all about keeping it simple so I can truly enjoy the other things life has to offer instead of worrying about details. With EDS nothing is simple, and nothing is ever the same, even from day to day.

Eating isn't simple anymore. I have to think about what I'm eating and weather it will make me reflux, if I am able to chew it, and finally if I can swallow it without choking. Some days are better than others. If I slept too long in a certain position then my jaw will be subluxed more than normal which will make chewing and swallowing even more difficult. If my hormones are crazy, my whole entire body becomes a loose mess and then I lack in the swallowing department because my muscles are a little more weak and everything is loose. That's at least 4 things I have to take into consideration just to eat. When I finally get to eat, I really have to concentrate on what my body is doing so I don't choke. I've got dysphagia, and have had pneumonia 3 times from choking and aspirating. Never mind about what I feel like eating. I live in Toronto, one of the best places to eat food from anywhere in the world and a lot of it is on my "restricted" list, because there will be definite consequences. Luckily Toronto is also a mecca for Nakki friendly foods.

I don't know about you, but comfort is my #1 priority when I'm not feeling well. On the cold and rainy days I will often be walking around in sweats or pj's. Oddly enough it makes me sometimes feel worse. It could be that whole "look good, feel better" phenomena; whatever it is, I still have yet to find something that is just as comfortable as pj's but looks like I could leave the house in it. For me, what I'm wearing is a pretty accurate reflection of how I'm feeling both physically and emotionally each day.

I dislike constantly going to doctors appointments. It's time consuming, I don't get income when I'm there because I'm not working, and it's always bad news. It's not like I'm looking for some kind of cure, but to maybe have something figured out would be nice. It would be a great change from the usual, not knowing what to do with me. I hate that I'm not really listened to, and that I automatically have to switch into self-advocacy mode to get anywhere. I hate that my decisions to use natural medicine aren't respected. I get told it's a bunch of crap,handed a prescription for all kinds of pills and told "good luck" because there's nothing that can be done.

I hate how everything gets worse each day with no plateau in sight. My ankle braces are shot. I've blown through them and they don't work anymore. I went to a consult to get some AFO's and it was interesting to say the least. The person assessing me had no idea what EDS was, (I don't expect anyone to know...) or where to start. I walk with my right leg turned in, as a result from countless hip subluxes and dislocations. She knew what to do with my left leg, but the right one was causing problems (very understandable) . She wanted me to come back the following week for another opinion. I think it's great that she didn't jump in head first and wanted to learn more about EDS. What is annoying, is that it has to happen in the first place. Really, why can't it be simple ? Next comes the application forms to fund these stupidly expensive braces. I have to hope that my diagnosis warrants enough merit to get the funding from people who probably have never heard of EDS. Haha that's just for my ankles, forget about the rest of my body that doesn't work.

I hate how much money I have to spend to keep symptoms at bay. I don't have a job with insurance, and most policies won't cover natural medicine. If they do, it's usually only a small percentage. Chiropractic and acupuncture treatments are expensive when you're getting one every week. Then there's the costs of seeing a psychologist and a natural path. The cost of vitamins and supplements add up, and don't get me started on food. Trying to find things that don't contain meat, wheat, dairy, corn, or preservatives isn't hard, but it's expensive. I will say that I eat like royalty, and food is a huge priority for me. When I eat what I'm suppose to, I feel so much better. It's a good thing I'm not picky and love to cook.

I love what I do for a living. Who wouldn't want to be able to play at work? I'm really having a hard time with the fact that it probably won't be lasting much longer. I know I should give up one of my jobs but I'm not ready. It's also hard to find an employer who will take someone on who needs a flexible schedule. I need to take time off for appointments, flare-up and injury days. I don't ever want to start at a job where my employer has no idea of my EDS. Also, who's going to hire someone who will have all kinds of needs that keep changing. I can't get a desk job because I'm not qualified for anything, and sitting is one of the worst things I can do for myself. I have no choice but to go back to school, which I will gladly do. I'm hoping that I will have the same passion and drive for my next career as I do now.

I hate how much EDS has affected my relationships with people. I've lost friends, because they don't agree with how I've chosen to live with it. That's pretty epic on my "things that upset me" list. There aren't many people who actually "get" it, and it just plain sucks. I feel so miss-understood and frustrated. I don't want to give up opportunities to be with my friends, but I don't have a choice when I'm not feeling well. I know that when I've had a pj day, getting out and doing something isn't going to happen. I'd love to do anything but stay in and lay around but it's not an option and it sucks. Dating, well that's become a bit complicated too. It's not like I can leave EDS out and not have it come up. I walk with my leg turned in and I wear braces on my joints....It's pretty obvious things aren't right with me.

I hate feeling powerless and just having to ride things out. I have no control over what's happening to my body and I have to deal with it as it comes up. It would probably be easier if pain flare-ups were less frequent and intense but that's not the case. I decided that I won't have my own children. I did the research and it's not a risk I'm willing to take. I don't like the idea of genetic Russian-roulette. Additionally, it has the potential to be really dangerous for baby and me. I know how my body reacts when hormones change, and it's not pretty. All hell breaks loose, and I feel like I've been hit by a truck. I don't even want to think about what being pregnant would do to my body. Even though, I chose not to have babies, it wasn't something that was easy. It's a primal instinct to want to have children, but I feel like it was also choice that I had to let go. It wouldn't be fair if I took the risks and they didn't work out in everyone's favour.

I hate how my entire life has been taken over by EDS. There are always consequences to every action. I miss the days of minimal joint pain, few dislocations, and simplicity. I essentially miss my old life. It was the one that didn't restrict me in what I could do, the one that didn't revolve around appointments and the one where I could be spontaneous.

I’m a believer that the world offers so many incredible and enriching experiences, waiting to be explored. I also think it is up to us to leave some kind of foot print; a positive one. All the places I want to go involve a back-pack, and are off the beaten path. I always dream up these adventures that would give the essence of how people live off the land and simply, but happy. I want to explore different cities, country-sides, and isolated communities to just take it all in, and experience it as locally as possible. I want to volunteer and provide hope for people who are stuck. Now, here’s the reality check of what’s really happening. The majority of what I just talked about will not be possible. It’s a hard pill to swallow and it happens all the time. I know there are ways to make things work, and that other doors are open but I don’t want to go through them. This is one of the biggest things I get hung up on. I have been dreaming of doing things like this since child-hood. This is where simplicity would be nice.

Now that I’ve got that out of the way, there have been good things happening as well. This is where I’m focusing my energy, or at least trying to.

I think it was in the last post, that I was talking about taping my ankles for Taiko. It totally worked! My ankles get tired after about an hour, but other than that it’s awesome. I’m so glad I took the opportunity as there have been a bunch of really good benefits. They’re kind of hard-core about form, posture and how you’re moving your body. I have the world’s worst proprioception, form and posture, it’s been great when the instructor will compliment these things. That my friend; is progress and I’m and going to enjoy it because it doesn’t happen often. It’s also a lot of fun, and very therapeutic. I can bang out my frustrations, and feel like dancing at the same time. I always leave in a great mood, energized and refreshed.

I had a consult to get AFO’s two week ago. Initially, it started like all the rest of my consults. EDS had not been heard of, and I would have to come back for another opinion. I had e-mailed the orthotist with info. on EDS and the link to my blog. I hoped she didn’t think I was a crazy woman, and took some time to learn about it. When I came back, I wasn’t sure what to expect. It soon became clear that she did the research and read my blog. I didn’t have to answer any stupid questions, I was listened to and taken seriously. Needless to say, I was very impressed. I also found out that I could get my braces customized. I thought my options were the fun patterns like the kiddos at work get on theirs. However, I can get pretty much anything I want on there, as long as it in a jpeg. I’ve always wanted tattoos on my ankles and calves but that not happening because I’ll have the AFO’s covering them. Here’s my brilliant idea: I’m going to get the images I want, photo shopped to look like tattoos and put that on the AFO’s. I walked out of that appointment in a great mood, and nothing could ruin my day.

Later that day, I met with a bendy (EDS) friend, and his girlfriend who live about an hour and a half from here. We’ve been talking on facebook for about a year now and finally got our schedules sorted enough to meet. I’m sure we looked classy comparing notes and bendy tricks at the bar. It was so incredible to finally meet someone who is going through the same things, and knows exactly what it life with EDS is like. We both couldn’t believe that we met someone who “got it”, and that we could talk openly without any criticism or judgement.

Hot tubs have also become my best friend. Warm, relaxed muscles + weightlessness=’s the most wonderful pain relief. Yes, I know hot tubs can be gross, but it’s well worth it!

Tips on Living with EDS

- Be proactive and advocate for yourself it really does pay off.

- Don't take "no" for an answer, keep going until you find what works for you.

-Let yourself enjoy the times when things work out, and go well.


"Risk, risk anything. Do the hardest thing on earth for you. Act for yourself, face the truth."

Take that bendy ankles!!!

I've been known to blow through braces. My latest victims are my ankle braces. They've managed to last 9 months and are currently being held together with super-glue.

I'm so fortunate to live in Canada where health-care doesn't cost a million dollars. What's very annoying is waiting for funding. I've got to get AFO's, and no one really knew where to start so it's been a lot of running around trying to figure it out.

I got a consult at the orthopedic clinic to see if I meet physical criteria for funding, then have to wait two weeks to get a prescription from one of my specialists. After that, the orthopedic clinic has to fill out and send the paperwork and I will wait even longer. If I do get the funding, then it means waiting to get molds, and having them made into AFO's. Total wait time: 50 million years. However, it's a step in the right direction and I'll take it!

While I was calling the specialist to book my appointment the receptionist who happens to be a chiropractic student asked me my diagnosis. She was the very first person in the medical field to know exactly what EDS was! I was floored, but in a good way.

After Taiko last week I knew wearing the ankle braces was not an option. We have to either wear bare feet or socks in the studio and my braces slide on the floor. I hate wearing shoes so I was pretty happy about that. I ended up having to take off the braces because I had no traction. That meant my ankles were a stretchy mess and all over the place. This week, I have a new game plan. I resorted back to using Leuko-tape for the stability, and super-glued that stick-mat stuff I was talking about on the bottom of my feet. Hopefully it will provide stability and traction. If it doesn't work, I'll find a different way. Take that bendy ankles!!!

"Do not go where the path may lead, go instead where there is not path and leave a trail."

Clothes and braces, a horrible combination.

I'm out of my funk and ready to kick some blog-ass again!

Classy, I know.

Over the years I've found a bunch of things to make life with EDS a little easier. When you have EDS and are stuck wearing braces, your clothing options can be limited. Braces have the amazing capability to wreck your clothes and give you horrible tan-lines. Mine were epic. It's hard to find something that is comfortable, practical and button, zipper, snap free. This also goes when your hands don't like to work. As a heads up, I will refer to Mountain Equipment Co-op as the MEC (they should pay me for this) .

When you've got to wear a brace like this:

You become a pro. at over-heating, sweating and becoming miserable. Not to mention, the brace itself will wreck ALL of your shirts. Quick-dry, breathable shirts are your saving grace. I have about 10, and spent the majority of the 1.5 yrs in that brace wearing those shirts. They are very comfortable, no buttons, snaps or zippers and are durable. You can get them from the MEC.

I don't know about you, but I HATE WEARING SOCKS AND SHOES IN THE SUMMER!
When it came time to get the ankle braces, I still refused to wear socks and shoes. Bad idea, you need some kind of socks. I found the greatest solution!!! I went the MEC and got some sock liners. Here's what I did to them...I cut off the toes and a little more. That way I could wear sandals, or "bare feet", my toes could still breathe and I wouldn't draw as much attention to myself. They're very light, quick dry and pretty durable.
Here's what the final product looks like:


Summer is also not the time to be wearing a huge shoulder brace and a long-sleeved shirt. I couldn't get away without anything between my arm and the brace, because the velcro would tear away at my skin. So.............I took a black sock (to match) and cut off the foot. Before putting on the brace I'd pull the sock up my arm, put on the brace and fold half the sock over the arm-section of the brace. It was a win-win situation. I could wear whatever shirt I wanted and the brace too.
You'll have to look hard but here it is:


I used to love, love, love going shoe shopping. I had "too many" shoes, as any man would say. After getting the ankle braces, I had to get rid of most of my shoes. It was a very sad day.
Now, I loathe trying to find shoes that fit. I have yet to find a pair of fun-girly shoes that fit well with the braces. I refuse to buy anything that costs more than $45 for a pair, because they'll get destroyed from the braces in about 2 months. Once again because I'm a MEC whore, I have found some really good wide, supportive, practical, water-proof, durable EDS friendly shoes/boots.The brand is called Keen (I have their paddle sandals too, but can't wear 'em anymore)I've had them for 6months, and yes the braces have eaten the insides of them but they're still in really good shape. For sandals it took forever to find a pair that would fit with the braces and stay on my feet, but I found a pair. They're Teva's I also have the pair of their shoes (middle pic.) that are brace friendly.


I know I'm not anywhere close to being a fashionista (not that I care), but I am comfortable. Everything fits, my skin is still intact and it works for me! Finding fun clothes that work with EDS has been a chore, but I've been lucky to find things I like.

Tips on LIVING with EDS

Comfort should be your #1 priority. We're already uncomfortable enough with the pain, why make it worse with clothes?

When shopping find clothes that are practical. When I say practical, it means that it should be practical for you, forget everyone else you're the one wearing it.

Don't get hung-up on what you can't wear, it's better than wearing a moo-moo.

Don't EVER be ashamed, be proud that you made it work!

"When life gives you lemons, clone them and make super-lemons!!"
(Clone High)