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

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

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

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

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

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

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

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

Coming down from the conference "high"

It's Thursday. I've been back from the EDNF conference, and my bendy friend's house for 4 days. I think I can officially say that it's back to stupid reality. Not everything is horrible, but I'm really missing what used to be.

One of my bendy friends on facebook asked the question: " If you could do/be/have anything you wanted, what would it be ? ". My answer involved things that I either once had, or was aiming towards. I'm not saying that I don't have any new goals, or things I'd love and can still do, but I miss my body the way it used to be. Summer isn't the same, I feel so confined in a body that does nothing but fall apart. I most definitely have nothing against relaxing in a park with a friend and having an ice cream cone, but there are things that still call my name and there's nothing I can do about it. One of my first thoughts after I woke up this morning, is that I still have money on my card at the paddle centre that isn't being used. I know I can't paddle anymore and it's just going to sit there, so I'm going to have to call and see if they can reimburse me for what's left on the card. Yeah, that conversation is going to be a blast. "Hi, I'm wondering if I can get my money back, I'm turning to mush and can't paddle anymore...Yes, I've tried and ended up dislocating like every joint in my body....No, it's not something that gets better." Going out to play soccer with a bunch of friends, that's not happening anymore either. Same goes for the climbing gym, anything that involves endurance (walking around fits in that category) or even eating without constantly choking. Thanks EDS.

When I was at the conference, I was normal. I didn't feel the need to justify everything I did, and nobody stared at me. Here, it's a whole different story. I could easily loose count of the number of people who feel the need to stare at me on the subway, or anywhere else for that matter. I'm not overly self-conscious, but seriously who raised them!! I can understand the whole curiosity thing, but you can be curious without making others uncomfortable. Especially, the subject of your curiosity. This is just me walking with my leg turned in, looking like I'm drunk with braces on my ankles. Things could get interesting when I finally have my AFO's and a wheelchair. Throw in the occasional neck brace and whatever else I'm using and I could have my own show.

I still feel like there are only a few friends who truly understand the complexities of EDS. For that, I get questioned as to what my body is doing, weather or not it merits all the braces, treatments and the wheels. Best of all, if it's just in my head, and I should work on my attitude. Granted, there are only a few who have seen me at my best (insert sarcasm here), but I have been more than honest in letting people know that I spend a lot of time in bed, and recovering for 2-3 days from doing something I used to do with no problem.

Nobody really sees me when my suspected dysautonomia is acting up, when I'm puking because my body can't process pain, when it's 4am and I'd love to do nothing more than sleep but I can't because I feel like I'm going to jump out of my skin. They don't see me tossing and turning in bed for hours trying to get comfortable without dislocating something. They don't see the effing agony of intense pain that won't go away, that has rendered me useless to myself and anyone else. They don't get what it's like to be at appointments 2-5 times each week just to be able to function independently. Most of all, they don't understand what it's like to go to sleep in agony, and wake up hoping to feel a little better but wake feeling worse knowing there's an entire day ahead.

I really try hard to maintain a positive attitude, and keep looking forward. Since returning from the conference I have been nothing but exhausted in every possible way from EDS. I'm essentially sick and tired or being bendy and tired. I'm sick of the isolation, questions, pain, unpredictability, constantly having to adapt everything and the relentless reminders that everything is getting worse as each day passes. Haha, this sounds so bitter...I promise, I'm not.

It's pretty obvious that at this moment in time, I'm not the world's happiest person. These are the days that I MAKE myself find the positive and happy times during my day before I crash at night. Here's my list of happy things for today: Got to decorate my living room with streamers and balloons, it was sunny outside, I wore one of my favourite skirts, I got to draw on the windows at work, I met some new people, I got to blow bubbles that smelled like strawberries, and lastly, it's Friday!!!!

"When I step into the light, my arms are open wide. When I step into the light, my eyes search wildly. Would you not like to be, sitting on top of the world with your legs hanging free. Would you not like to be, ok,ok,ok."

(Dave Matthews Band)

My take on the EDNF conference

I'm going to start by saying that the conference was incredible. I was surrounded by some amazing bendy friends where we could be open, honest and empowered. Unfortunately, we were brought together by something that wreaks havoc with every aspect of our lives.

When I first walked in, I will be honest and say that I was over-whelmed. It was the good kind though. I realized that there were a TON of people (about 500+) who "got it". It was like the first time I met my two bendy friends here, multiplied by 500. Holy awesome Batman! Right away, I think we were all able to approach anyone, introduce ourselves and just start talking like we've known each other for years. Now that it's over and I'm back home, I still can't believe it happened. There were people from Canada (woot!), USA, Sweden, Japan and Australia, all living with EDS. We had our own universal language and mutual understanding despite the cultural and language differences. It amazes me how greed, religion and power will tear people apart, but a chronic condition will bring people together. I wonder what John Lennon would have to say about it? Perhaps something witty and brilliant...

I had to laugh at a couple of things. I know that there were a million things that needed to be taken into consideration for this conference to happen. The EDNF did a fabulous job organizing, and making it work. On both Saturday and Sunday, the conference and speakers started around 8:30 am. Mornings and EDS don't really go together. I do know there was an insane amount of information that had to be squeezed into those two days, and doing it any other way would not have been possible. The other thing that I found funny was that one of our meals was buffet style. Mmmmm buffet. The only thing was, that we needed to carry our plates from one room to the other. Some of the food was hot. EDS+walking+breakable dishes+hot food='s a disaster waiting to happen. I liked that the following day, our lunch was already packed in bags that would be easy to carry and filled with a variety of food. 10 points for the hotel!

I went to really good presentations, and always came out with something new to try. I can't say that I learned a whole lot and that everything was new, but it re-affirmed that what I'm already doing is good stuff. I came away knowing that everything my body was doing is pretty much text-book and that I'm not crazy. It got to a point on both days were I was sick of talking and learning about all the wonderful things EDS puts us through, it eventually became depressing. Maybe it was the affirmation of everything that's been going on with my body is in-fact EDS, and that I wasn't going to be one of the "lucky ones" who suffer few symptoms with little pain and will be able to be independently mobile. While I was at the conference I stayed with one of my bendy friends who lived about ten minutes away. It was nice to go back "home" and not talk so much about EDS but to hang-out and talk about other things. I was very impressed with the doctors who presented. I know they're awesome with EDS but it is the complete opposite of what I and probably most of us have experienced. It was so nice to hear them use our bendy language and just talk about it matter-of-factly, and know that they have listened to their patients and take them seriously.

I met with so many people and had so many conversations that I'm still processing it all. One of the conversations that stuck out was one about adoption. I was lucky enough to find more than one person who made the decision to adopt for the very same reasons as me. They were successful, and are the proud parents of very beautiful children. It made my year, for two reasons. The first being, that I could pursue adoption and it was possible even with being disabled. Secondly, that I could do it, I could be a parent. I don't want kids anytime soon, but it's still a realistic possibility that I will one day make happen.

Amongst all the empowering conversations, there were times when we talked about how sad, angry, afraid and just over-all frustrated we were at what EDS has done to us. As much as I don't wish having EDS on anyone, it was nice to know that other people felt the same way and that I wasn't just being a whiner. I realized that when we go through everything we do, having these feelings is normal and healthy. What if we just denied everything, or didn't give our-selves the chance to just be ? I think the consequences of that, would be far worse than what we experience when we face it all head-on.

Before leaving for the conference I was initially nervous about the whole thing. I knew it would be good for me to go, but was feeling cautious. I was afraid of it turning into a big crying fest, and just being presented with all the doom and gloom of EDS. It was the complete opposite, and I didn't want to leave. I was in a place where I felt normal and like I belonged, where no one stared, judged my decision on how I was choosing to live with it, or told me that what I was doing was wrong. For the first time I didn't feel like a nuisance for having EDS, I was allowed to be me and it was wonderful.

I'm sure as I finish processing it all, I'll have more to say about the conference. I am forever greatful that I had the opportunity to go. I gained new information, a renewed confidence in how I'm living with EDS, and most importantly new friends. All in all, I couldn't have asked for anything better.

To all of my bendy friends wherever you are, I admire the courage and strength you all have to wake-up each morning and face the day.

" Some people think that holding on is what makes one strong; sometimes it's letting go"
(Sylvia Robinson)

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)

Mixed Nuts

This post doesn't really have any one theme I'm just rambling, or reflecting I should say.
I'll start with the junk, because ending on a positive is always better.

I have a consult with an ENT just after I get back from Baltimore (more on that later) .
When reading this, keep in mind I have a twin sister. When I write "we", it's not because I've gone crazy...The combination of being born early and having ESD is one of the reasons my ears have been messed up my entire life. I had a tubes, tonsils and adnoids surgery very early on. Like before 1.5 yrs old, and have had 3 more tubes surgeries with constant ear infections and hearing issues. Pair that with GI issues and ADHD/learning issues I saw a lot of dr's growing up. Not nearly many as now, but a lot for a child. My ENT as a child was a HORRIBLE DR. He would poke things in our hurting ears, and yell at us for being jumpy or getting upset. We got a poked with a lot of needles, had x-rays done ect...the whole bit. By the time we were 5 anything, or anyone who resembled a doctor would send us into a panic. Part of that is also that they didn't know how intense the twin bond was. We both generally had issues at the same time and that meant watching your other half go through it too. I once remember waking up in the recovery room with my sister on the other side of the room (yeah we did the 2 for 1 surgery...) and the nurses and doctors not letting us be together. That was before we screamed until we were beside each-other :) By the way, you don't want to mess with a set of twins...you're asking for trouble.
I think that was what initially started my mistrust for doctors. As I grew up, I slowly learned to trust again. When the EDS started up, and I saw more and more doctors; I started trusting less. I've had to be so proactive, and really fight hard to get to where I am now. I've learned to take nothing less than what I want and if they want to fight with me after the initial consult, I won't have any of it. There have been doctors and specialists who have said some pretty mean things, enough to get through this thick skinned girl.As a result I have become hyper-vigilant of new doctors and want them to know what they're working with (EDS) before we start anything. I've had over-confident, ignorant doctors who have messed up my body even more. Most of them have dismissed almost everything I've said, with reading in hand. I'm going to try something called Muscle Activation Techniques, and am not sure how to approach the whole thing. They say that it has huge potential to help joint instability, pain and arthritis. I know I have nothing to loose, and won't know until I try it, but that also means trusting which I don't do very well. The one thing that has helped, is the switch to natural medicine. It is the complete opposite, and it's wonderful.

Speaking of opposites, in the last week my EDS itself hasn't gotten any better. But.....living with it has become easier. To keep it short and sweet this was my facebook status today: extremely humbled and greatful that in the midst of EDS hell, the universe still has my back. My entire trip to Baltimore and a set of wheels have not cost me $ 1.00 Sending out the positive ju-ju to everyone else. Take that negativity !!!

I'm so excited for the EDNF conference in Baltimore. Getting info. for my doctors will be good but I'm most looking forward to meeting the people I've been talking with for the last year. Just imagine, a ton of us bendy people all in one place, where everyone "gets it". As for my wheels, it's a collapsible and second hand. It needs some work but will pretty much end up being a custom job by the time it's ready to roll. I've become a pro. at adapting braces and other things to make them EDS friendly. I'll be getting a lot of good use of it, and am looking forward to reducing injuries and being able to participate in life more.

I still can't say that I'm excited at the actual prospect of needing wheels, but I can't change it. I can only find a way to make it work for me. The same goes for the AFO's that I needed like last month. I'm still waiting on funding. Ugh. The weekly fight with doctors and people who say I can't get funding still continues. I'm hoping this will all change soon. It's exhausting and is the biggest thing that sucks the life out of me.

The key to getting through all the hard things in life is doing things that you love. This weekend will include: paddling and going to the Pride Parade with my two bendy friends :) Now that the stupid G20 is gone I can start enjoying the city again. (Don't get me started on what I think about how it all went down, I could write a novel. Let's just say I am one of the people pushing for an independent review of the security )

p.s. I have no idea why I'm getting these underlines going on with some of the text above. We're going to call it interpretive art....

"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 happeness. Though it could always be called hope-ness. You must always leave room for hope that all happens for a good cause."

(From the book: How to be Happy Dammit!)