The time EDS threw me into the epic pit of doom, and I slowly climed my way out

It's been f.o.r.e.v.e.r. since I've logged on and actually wrote something worth posting. There were a bunch of futile attempts but nothing I felt was worth hitting the "publish" button.

To sum it up, EDS kicked my ass. Royally.

The migraines and gastroparesis got out of control and basically left me unable to do pretty much anything. I had to completely stop working, and figured that I was okay because I still had school going on. Eventually that had to go too. I couldn't do any of my readings without getting slammed with a killer migraine and spent the majority of my time laying in the dark. Gastroparesis left me refluxing and vomiting anything I put in me, wether I ate it or put it through Jerome. Nothing was working.

It all began to affect every other aspect of my life, which eventually led to depression. I was done with trying beat being sick and resigned myself to being stuck in the epic pit of doom forever. I stopped caring about everything and felt like I was just existing. I didn't have anything going on besides being sick.

There were so many things I wanted to do, but there was NO way any of it could be done. I had figured if I couldn't do the school thing, I could at least volunteer. However, being that sick made it impossible. Being as sick as I was, left me with no consistency other than knowing at some point during day I would end up laying in the dark barfing. I had no idea where I was going or what was going to happen next, and it scared the shit out of me.

The one thing that did stay consistent was the unconditional support and love from my friends. I was lucky enough this time around, that most of them stuck around. They knew how sick I was, and did whatever they could to help. They were the ones who met me at the bottom of the pit of doom and helped me dig myself out. I couldn't really go out and do much of anything, so they came to me. My living room and bed became the places for us to hang out, unless it was a good day and I could lay on their couch or floor. Countless ice cream and finger-painting dates were had on my bed, and that was the very best medicine. I had friends who'd roll with the punches and make the most of whatever my symptoms were throwing at us. If I wasn't well enough to be upright, we'd lay in the dark and talk or meditate. In the evening and at night was when my body could tolerate food, so we would have picnics in the park at night. My friends would come to consults and appointments with me, knowing how hellish they had become, because no doctor would go near me. My friends are the ones who kept me participating in life, who kept me afloat when I was too tired to swim. They always picked up the phone at stupid o'clock in the morning when I was having the biggest meltdowns of my life, not knowing what to do with myself. One thing that was vastly different this time, is that I knew without a doubt that I could trust my friends. They had my back, no matter what. None of what they did was out of obligation, it was out of love. That reason alone, has been the thing that has given me the drive to climb out of the epic pit of doom. I can't thank them enough for everything they've done, but I know I don't need to thank them, because I'll have their back whenever they need me. That's just how it works.

Some of you might choke on whatever you're eating when you read this part...The other thing that made a difference is that I finally found doctors who will take me and my crazy body, and do whatever they can to make life better. It started with one doctor after an ER run, he was the first one other than Awesome GP to listen, believe me and rack his brain to find things that would help. He was the one who gave me hope, and encouraged me to hold on. He was the one who found a medication that helped the migraines, and who referred me to other doctors to get the GI insanity sorted. Interestingly enough 3 of my favourite doctors went to school with Awesome GP. Now I'm happy to say that I've got an incredible team of doctors who are also willing to take on other bendy's.

I'm going to finish this post with a bit of a happy ending...a month ago I finally got that Nissen Fundoplication done. It's been a month since I've last had reflux or vomited (for real). It took years of doctor fighting, countless tests, ER runs, hospital admissions, extra-parts (J-tube, Port-a-cath), injuries from the said barfing (I gave myself a hernia), 25lbs lost, being hooked up to a portable IV pump for a month and endless advocating. Now I'm recovering with a light at the end of the tunnel. When I'm fully recovered, I can just have a plain g-tube (I'll call it Gerome), won't need my port (Perry). I'll start being able to get some of my life back, it will be far less complicated and I can start moving on to other things while I get the cervical instability sorted. I know I'll always be needing surgeries and procedures to stay alive and well, but having surpassed the biggest hurdle yet feels great. It couldn't have been done without the endless support of my friends, family and kindness of strangers. The universe has taken me on quite the ride and brought some truly incredible people into my life. I'm excited to see where else this journey takes me and the other people I'll meet on the way.

Our Bendy Posse has grown significantly not only in numbers, but also in how much we consider eachother our own family. From a group of people who met on-line a couple years ago, then meeting for real months later at a conference in another country, we worked hard at networking, advocating and building a relationship like no other. It is fair to say that we'd do anything for eachother, with nothing being out of the question and all out of unconditional love. We take turns being guinea-pigs for surgeries and procedures, refer eachother to doctors, do fun things outside of all the medical junk we deal with and will stop at nothing to ensure our bendy brothers and sisters are taken care of. Alone we can manage, but together our strength can't be measured. And you'd better believe no one messes with this bendy posse, no one.

As dark as these times have been, they've also been a time of significant growth with lessons that couldn't have been learned otherwise. I have so much gratitude for the people who've helped me out in the last year, no matter how big or small their contributions have been, none of it has gone un-noticed and I am truly grateful for it all. I never thought in a million years that a crazy disease would bring many people together from all different walks of life, to help out a girl who just wanted to give peace, compassion, creativity, love and empowerment to those in our world who needed it most. I guess the universe figured that it was my turn to be on the receiving end this time, so I could take what I learned this time and apply it to my previous work, to create something more powerful and filled with love and compassion that could be given to whoever needs it next.

As this journey gets more wild and crazy, bigger things are happening with regards to awareness and treatment of those with connective tissue disorders or other rare diseases. I couldn't be more proud to be part of this revolution, knowing we're in it together and changing things for good. I guess it goes to say that we should never underestimate the power of bendy people and the people behind them, because we make big things happen.

Thanks for sticking around, when this blog has gone silent for the past while. I'm hoping that this is the beginning of regular updates and good news to follow.

These pictures are in no particular order, but I've been wanting to share some of them so here we go....

This Soctopus's name is Juju, given to my by a bendy sista' who came to visit after I got fundo'ed. On the back of it, the phrase I constantly use "Just keep swimming" was embroidered. Juju made recovery so much happier. Interestingly enough this bendy sista', was a friend of mine in high-school who also had wacky health related stuff going on too. After learning about EDS on my Facebook and doing a little research, we got her in with Awesome GP and the same geneticist. Turns out, not only are we high-school friends, but officially bendy friends too! I'm so happy she finally got a diagnosis, but sad it was EDS...You know how it goes. She's a regular at my house, we spend hours hanging out in my bed, finger-painting and eating cookies. Because at least if it tastes good going down, it's worth it coming back up! Isn't gastroparesis awesome?!

This was fundo day, and Tiff and I made sure to make it FUN as possible. We busted out the Sharpies in pre-op to kill some time and cover me in juju. She drew everything lucky she could think of on me before they wheeled me in the OR and started chopping. After I got out of recovery and back in my room, the colouring continued and my entire leg was covered. She was the recipient of foot and calf massages while she coloured, as her dislocated metatarsals weren't happy and needed to be elevated. It was yet another opportunity for me to trust (something I've been working VERY hard on) and she took such excellent care of me since I couldn't do anything myself. She made sure my head/neck were supported when I was re-positioned, she re-located joints for me, got me drinking sips of juice, and gave the team of dr's hell (I mean educated them) when I didn't have adequate pain control. She was my "person" and I wouldn't have wanted anyone else for this round but her. When she get's fundo'd I'll be her "person" and will do whatever it takes to make it FUN cause that's how we roll.

 A very dear friend of mine gave my this Tibetan Buddha she got while she was in Burma a while ago. There's a pretty incredible story behind the whole thing, and she was sure the universe wanted me to have it. I loves that Buddha!!! The crystal he's holding is from another one of my favourite people and dear friend. It comes in my pocket to all my appointments and is packed with juju to work it's magic whenever I need it. Those beautiful flowers are from one of my "other mummy's" who's been a constant source of love and encouragement for years. She always finds the coolest healing/encouraging things to send and those flowers came to me one day when I was feeling extra-poopy. She has a magical way go getting things to me when I need them  most. I love how I was able to capture all of these beautiful things together in one picture, that makes me so happy every time I see it. As it's jam packed with nothing but LOVE.

Surprise, Surprise there's always a bendy in the hospital. I had an idea one day to make a Bendy-Bag O' Fun & Survival for whoever was inpatient. I told another bendy sista' about it, and she jumped on board and we filled that bag with so many awesome things before heading to visit Christie at Chateau Sinai. When she gets discharged, her job is to add another item to the bag, and send it to whoever is inpatient next. We hope the Bendy Bag evolves into something far beyond what we could ever imagine, since we're pretty good at doing things like that in crappy situations. It's one of our posse's super-powers.

Some more awesomeness that came when I was sicker than ever, was multiple hair-cuts from a friend of a friend who thought I needed a pick me up. Darlene does such an excellent job with my cave-man hair!!! I also got a package from another bendy sista' Brooke who sent me the coolest surgery pants ever. Of course they didn't let me wear them during surgery, but they were the first things I put on when I got to my room. These pants make me so happy!!

Right now, Christie is stuck at Chateau Sinai with a host of GI craziness very similar to what I had, and pretty much every EDSer who's got gastroparesis. We managed to bust her out one afternoon for some fresh-air and sanity, which is the best medicine ever. She perked right up, and looked so good after getting out for a bit. Poor girl is still stuck there, so our posse tries to make frequent visits to make sure the doctors are doing their jobs, and restoring sanity along with some much needed silliness. 

 No, I promise we don't need to be moved to the psych floor. This is part of our dx...This photo is a bit old, I was still recovering and couldn't sit, constantly needing ice-packs on my swollen stomach.

 Miss Brooklyn has been through HELL and back, not only is she the first in our group to get spinal fusions, a Chiari decompression, she's getting a fundo now too. I'm excited for her because there will finally be an end to all the GI insanity, but this girl needs a break!!! She's my J-tube and port-a cath buddy. It's hard to see, but in this pic we're both hooked up and getting infused at a bendy get-together. She's one of the toughest cookies the world has yet to see. Nobody ain't got nothin' on her! Yet, sweet as pie. We loves you Brooke!!

 Ted had surgical craziness around the same time as well. A simple procedure resulted in insane bruising from his hips to his toes, along with a hospital admission. Thanks to dr's and tech who decided not to listen, and had a bit of the god complex goin' on. This is why we have to fight so much, dangerous things happen to us so easily when we're not taken seriously. Sadly we end up having to prove them wrong, by enduring the consequences of horrible judgment. Soon our guitar playin' brotha' will be back at school, composing and playing some incredible jazz for the world to hear.

Tiff, my sista' from anotha' mista'! I can't wait to take care of her when it's chop-chop-fundo time for her. We make a great team and I'm so happy that we found eachother. Neither of us believe to this day that it was at a medical conference in Baltimore, when I randomly offered to tape her ankles, and we both realized that we lived in the same city. Never in a million years....Thank you universe for bringing us together!

So now that I've got this post hot off the press, to say....There will be more to come. Thanks for the reminders to write, and the encouragement to "keep swimming" when I felt the only thing I could do was drown. Thank you for keeping me afloat. Nak is back!

I think my next post will be about our 80+ member strong real-life support group we've worked so hard at creating for ourselves in Ontario. We had a mission, and boy did we deliver!! It's cause we're awesome... If you are someone in Ontario who's got Ehlers Danlos Syndrome and are looking for support look here :Ehlers Danlos Syndrome Ontario (EDSO)

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)

It's all good. New J-tube, adaptive goodness and testing theories.

* This post contains some potentially gross looking pictures of feeding tube stuff, don't tell me I never warned you*

It's not any news that life has been on the verge of insanity. Wait, that's pretty normal around here.

I guess I'll start with the introduction of Jerome 2.0

Yup, it's a Mic-Key button and I love it.
Getting it put in was a bit of an ordeal and expensive, but totally worth it. I got it done under sedation and a ton of locals. The tube didn't go in easy, it involved a lot of poking, digging and expanding. It also hurt. A lot.


For the most part, the swelling has gone down, it's stopped bleeding and far less sore. Balloon stomach wasn't so much fun.

I can sit up and stand straight now, but can't bend enough to put my back and SI joint where it belongs. Laughing, coughing, didgeridooing all still hurt and laying on my stomach is dodgy. Soon this will all be a thing of the past and Jerome 2.0 will be fantastic. I've been rocking the natural and Chinese medicine for this, and it all seems to be going well. My most current issue, is that my skin doesn't seem to like having the button too much.
I think it's a matter of compression from the swelling, irritation because the button is right on my skin and we can't forget about tape-rash. For now, I cover Jerome with Tegaderm while I'm in the shower to keep it dry. The button is bigger in diameter than the tube so the stoma had to be expanded. That was a blast! Wow, it looks like I've got a baby in there too. Yeah, no chance of that happening with this girl.

I love home-care. When I got out of the hospital, I was officially declared permanently disabled needing on-going care. There's a nurse that comes, asks me what I need and then a couple days later I get a box of supplies. It's a pretty sweet deal. Today's box included the Tegaderm patches I asked for, so I could cover up Jerome. I got them alright, they're the size of my head! My independence sometimes baffles a lot of people in the medical profession. I think having patients who take initiative and use other methods of healing freak them out a bit.

While we're on the subject of the tube, I had other interesting happenings going on just before I got Jerome 2.0 put in. Whatever was draining out of the stoma was irritating my skin. It was making it itch, crack and blister. Otherwise, everything else felt fine. I chalked up this theory that it was a PH issue in my stomach. Normally, or rather I used to be on an high-alkaline diet to control the reflux. When I had the pneumonia thing going on, I was hooked up to my pump pretty much all the time, with the exception of a few hours during the night. That meant, I wasn't getting anything alkaline in to help neutralize all the acid that likes to live in my stomach. My tube goes through my stomach to my jejunum, so whatever is brewing in there was I guess burning my skin. I decided to cut out anything acid forming and push the alkalines to see what would happen.

My theory was right!! Lemon water is my best friend. I can't taste the electrolytes I mix in, and the lemons which are an acid, turn to an alkaline when they get digested in your stomach. They help to break down food and absorb nutrients. It also tastes delicious, what more could anyone want?

Part of my package that involves home-care includes giving me access to other services I need. So now I've got some fantastic Occupational Therapists. I'm their first patient with EDS, like everyone else and they've been nothing but awesome about the whole thing. Every time I come out of an appointment with them I'm still baffled. It's the good kind though. In my last post, I wrote about the CMC/wrist splint we made. I love that thing, I can use my hands again without hurting myself.
I took a Sharpie marker to it because braces shouldn't be plain....ever. The writing is derived from a Japanese proverb that says "Fall seven times, stand up eight." Yesterday I checked to make sure I had written it correctly. Boy, was I glad to know that I didn't insult an entire culture or make an ass of myself.

I also got a few ring splints. At the conference this summer, I got to try on different kinds and was amazed that such things existed. I could use my fingers, and they wouldn't bend backwards... I'm still not sure exactly what I want yet and don't want to make any hasty decisions about them before I apply for the funding, the silver ones are insanely expensive.

This is what happens when I push on anything with my fingers. I think it grosses people out on the elevators when I'm pushing the buttons, hahaha.

Check that out!! Look how straight they are! It took a few days to get used to having fingers that didn't bend so much, but having more use of them is priceless.

Last week we made some adaptive awesomeness for my syringes. The surface area is small, and requires a lot of fine-motor skills. I don't have that anymore, and with bendable fingers it's a recipe for disaster sometimes. When you've got a syringe full or greens mix waiting to go in a tube and you're fingers slip, greens mix ends up every else but in the tube...When you sublux your fingers at the same time, it's a party!!

The pieces are easy to take on and off the syringes and make it so much easier to use.

Ta Da!!

Cool eh?! I'll have to get pictures of it in action, so you can get the whole idea.


When everything seems impossible and I want to surrender myself to EDS, I realize that I'm surrounded by truly incredible people who give me that extra push when I need it, in their own little way. They put wind back in my sails, so I can continue on with my own adventure and live my best possible life. I am continually blown away and so thankful for it all.

"Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world."

(Harriet Tubman)

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)

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.

Digging out...

So I'm slowly working my way out of this epic funk. It's been a while since I've felt that helpless, scared shit-less and hopeless. Wasn't that classy?

It took a few days to get enough motivation, to even think about attempting another start at life. It doesn't change the fact that I'm still really tired and just sick of it. Before I was ready to get back up and keep moving, I needed to process and just be. This happy-go-lucky girl needed to put away the positive attitude, and face a lot of hard, scary shit. There is something good to be said about sitting alone on a beach in the dark, having a good cry and a talk with the universe. Maybe because I like to do that stuff alone, or maybe it's because when I'm near the water, I feel whole. Either way, it was where I needed to be at the moment, and it felt good.

None of it means my situation has changed, or suddenly become better, but it means that I took a long hard look at EDS, and decided that I was still going to kick it's ass. Not that there's really a choice.

A huge part of being able to start digging out has been the incredible support of friends. These are the people who accept the whole package that is me, even when I'm not all smiles with sprinkles and a cherry on top. They offer to come visit, go out for a bite, and do things that make me happy. They find ways to keep me engaged in the world, and let me be alone when I need it. There's always a listening ear along with a laugh and encouragement to keep moving forward. Really, what else do we need in life?

I think I may have found another game plan to avoid the ER for a while. Since I can't seem to handle anything by mouth before I put something through Jerome without puking, and always feel gross waking up, I'm pretty sure it's a dysautonomia thing. I'm going to see if getting 500mls of some home made natural electrolyte/saline type concoction on a gravity t feed will work,.Hopefully if I do it first thing when I get up or am feeling extra gross, it will yield some results. I guess the bonus is that I can still lay down and just chill out instead of trying to fight with feeding J, because sitting makes things worse. Not to mention, if I feel like I'm going to pass out, I'm already laying down.

I found this awesome vegetable peeler over the weekend and love it! My fingers don't dislocate!!
http://www.chefn.com/Product.aspx?id=51

In the midst of this funk, I realized that even though things are crappy I'm still really lucky. I may not be one of the "lucky ones" who we all had hope of being in the beginning of our walk with EDS, but I think I fall into a different "lucky ones" category. Sure, I feel like ass every single day, I need a braces, a wheelchair and a million other things to function. However,I have avoided a lot, and have been able to live a pretty damn good life. Aside from getting Jerome and fluids, I haven't needed any other medical intervention. None of my organs have prolapsed, I haven't needed any othro. or neuro. surgery, or crazy meds to be able to function. Everything else has been tests, consults and fighting so I can do it my way. I am lucky because I have found awesome people who always try to find ways to make life work with natural and Chinese medicine, who have never given up when everyone else has. I'm still scared shitless at what could happen and what will most likely happen, but sitting and waiting around for it to happen is so unproductive. So, I say eff it. I'm going to do it my way because you only live once, and there's only one way to find out if something will work. If plan "Z" doesn't work there's still room to come up with something else.

I hope for any of you that may be in a funk; that you can face the scary shit, decide that you're going to kick it's ass and can start moving forward with a new plan. Remember to do it in your own time, and in your own way, because that's really the only way.

"When I find myself fading, I close my eyes and realize my friends are my energy."

Waving the white flag

Today, my facebook status consisted of "Dear: EDS, fuck you. that is all".
It was followed by a whole bunch of "likes" and similar comments from fellow bendy friends.

I've been really trying to focus on the positives, with a whole bunch of transitions happening at once. Some days are better than others, but it's been hard. There have been many moments this week where I have wanted to wave my white flag and just give up. I only have so much fight in me.

The biggest trigger for my current low is probably the ER visit earlier this week. Holy letdown Batman! Dysautonomia got the best of me, despite my efforts to stay away from the hospital. It was the usual over-response crap, minus the barfing (thank you Jerome). Although I was refluxing on water, it was gross. I had been pushing liquids, salt-water and supplements through J, and drinking lots of water, but to no avail. I had been really dizzy, with brain fog and completely exhausted when I had my follow-up with Awesome GP. He told me to get fluids if it got worse and it did, so I spent the afternoon in the ER again.

I'm not sure wether to laugh or cry over the fact that there are people on the ER team who know that I'm the girl with EDS, know my name, and know that I know my stuff, and let me call the shots. Ya know? It's come to a point where it's almost patient directed care. There's a bit of routine...I go into triage telling them I need fluids and Gravol, they do the standard evaluation, I hand them my past ER reports, info on EDS and dysautonomia and we get started. I can tell them where my good veins are, not to waste time doing any tests, and that I'll be fine after 1-2L of fluids and 50mg of Gravol. I change into my pj's, they put the line in and push the Gravol through. I lay down, throw on the mp3's, and take a nap. A couple hours later I'm feeling better, and am ready to get the hell out of there. I'm sent off with the usual "you know when you need to come back" and "good luck" every.single.time.

I'm usually asked a million questions, which I don't mind. They're wanting to learn, cool! This time, it upset me a bit. I think it's because I'm actually listening to what I say and it's not fun to hear when your conversation goes like this:
- So is there are there any treatments or anything they can do for the EDS?
- Nope, it's treated as things come up, although a stem-cell transplant would be nice.
- Oh.
- What about the dysautonomia?
- Yeah, nothing for that either, you can kind of treat the symptoms as they come up.
- Wow, that sucks. Good luck.

The positive, optimistic, idealist in me says "It's not all that bad, I could be needing to live on a ventilator, and not be able to move or talk" but there's been a huge part of me saying "Yep, it really sucks". I've exhausted pretty much every possible resource, and can't be anymore pro-active. When I ask about other options, and the answer is "I don't think there's anything else we can do". It's like being kicked while you're down.

One of the biggest reasons for me getting Jerome (gj-tube) was to avoid the ER. Yeah, that plan failed. Just like every other plan. I think I've got one last trick up my sleeve, but who am I kidding, it's EDS. You can plan all you want, come up with 6 different back-up plans and it will still find a way to win. With each failed attempt at trying to re-gain some control over your life, and this stupid disease, it doesn't leave much room for hope that things will eventually get better. That means that the constant appointments and visits to the hospital will continue. Perfect.

I know I am sick. I know that it's not ever going away, and I know that it will probably get harder. What I don't know is, what I'm going to do next, how the hell I'm going to manage, and what EDS will take from me next. I have very few things left and don't think I can deal with loosing anything else. Really, I'm a month away from being unemployed. Physically, I can't do my job anymore. I can't get a desk job, or anything that requires me to be upright for long periods of time. So for now, my options are going back to school and see what happens or, go on disability. I'm not ready for it, but I feel like that might be my only option soon. My worst nightmare is essentially coming true. I'm having to give up everything I've worked so hard for, including my independence, which is one of the most important things for me. I'd have to move back to my parents house in suburban hell with no job, no friends there, nothing to do and nothing to contribute. I will be relying on other people, yeah... not my thing. I've spent the last 10 years teaching people skills to be independent as possible, I try my damndest to practice what I preach and now I'm needing help with everything. Barf.

It drives me absolutely crazy when people ask me what's new, and I can't come up with anything but my most recent medical drama that has consumed my life, and what I can't do anymore. Then I get the usual "take care of yourself and stay out of the hospital" for a farewell. I'd love to stay out of the hospital. As one of my bendy friends said today "I'm sorry my life is nothing more than a giant freaking broken record. I can't help it and trust me, I'd change it in a second." She summed it up perfectly.

I don't know if it's because I've always had a game plan, but everyone asks what I'm going to do next. To be perfectly honest, I don't know what to do anymore. I'm tired of fighting all the time and constantly loosing. I'm just sick of this shit, all of it. I'm not going to ask "why" and try to come up with some philosophical reason for it. I'm also not going to pretend that everything is sunshine and lollipops. I might slap a smile on my face and pretend that living with this shit isn't a big deal, but it is. It's a big, complicated, painful mess that nobody can figure out,and there's a lot of us stuck in the same exact mess with the same crappy options. How uplifting.

So for now, I will continue doing what I can, eat ice cream, and play my didgieridoo. Maybe I'll somehow have an epiphany that will find me a way out of this mess.

My apologies for the negativity, but it was honest. Pretending all is well would be a big giant lie.

"Truth is like the sun. It may go in for a while, but it ain't goin' away"
(Elvis)

It's okay to be okay

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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