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)

Jerome and Perry, the tale of a Port-a-cath and a J-tube.

It has been two weeks since Perry got put in and Jerome changed out. I'm just starting to get my energy back and finding my groove with two new men in my life. By men, I mean tubes with boys names. The first week was a write off in terms of me being physically able to do anything. It's not like getting Perry put in was some big surgery or anything, but because of the way my body works it knocked me out. When I was talking with the surgeon beforehand, I made sure he knew that I wanted Perry put up high on my chest. The reason for it is because I didn't want the tube going into my jugular vein to be pulled, and finding comfortable clothes would be easier. When they were doing the procedure, I reminded the team of it again. Sedatives don't really do much for me. So as it stands, Perry is on my boob and the tube going into my jugular vein is always pulled and tight. Wearing push-up bras, v-neck or scooped neck shirts kind of help things. It doesn't help that I use my pectoral muscles for everything that my shoulders should be doing. Having Perry placed where he is, has been taking a lot of getting used to. I'm getting a lot better at not hitting my boob and I had to learn to hug again. The first time I hugged someone with Perry accessed, it hurt like a mofo. The incisions are healing well and the bruising is almost gone. I love the fact that it only takes 1 attempt to get him accessed and it doesn't really hurt. It's so much better than multiple attempts at digging around and blowing out veins. I'm getting 2L of fluids over 3hrs everyday. I refused a pump and have the freedom to be hooked up in my room, the living room and the front porch. The funny thing is I'm taking better care of myself at home than I was getting in the hospital. I'm so thankful that I can do things my way.


Jerome, he's healing well with some funky scaring and I've had no problems with him. Except that I still really hate the type of tube that he his. I cut those white pointy bits off the tube and have found that my skin prefers to hold Jerome in place with Tegaderm rather than paper-tape, and the red plastic attachment is sharp and scratchy. I just really dislike the fact that it's uncomfortable and I can't un-hook this tube and forget about it like I could with the mic-key button. There are bonuses with this tube, one is that I don't need the expensive extension tube for the mic-key button, which does not come with a cap or lid, so I had been putting it in a Ziplock bag. Secondly, I can lay on my stomach comfortably which I couldn't do with the mic-key. However, now that I have Perry I can't really lay on my stomach. Bleh.

Overall, I'm feeling okay if I have my fluids and pretty much everyone who sees me says I'm looking better. I still have dysautonomia spikes but they're less frequent and not as intense. GI wise, if I'm not really using my Jerome or eating I'm okay. I still have the awesome puking abilities. Lentils and quinoa that I had eaten 12 hours prior didn't want to stay down, I even get lentils stuck in my nose as part of the side show. Aren't you glad I told you? I'm refluxing pretty much everything except that plain chips, rice noodles, mangoes and coconut juice are relatively okay. I still eat other things because I need the nutrients, I love food and if I'm going to barf, it's going to be worth it.

I'm still working out a routine and efficient way to work in Perry and everything that comes along with it. After a week of fighting with home-care I finally have a care-plan that works for me. The one they gave me had to be refused and worked out a couple of times. It was well worth it. Living with EDS means a lot of loss and a lot of compromise. One thing I will not compromise is my quality of life.

I still get headaches and migraines everyday but with the fluids, being in low light or darkness, quiet and laying down are helping. I've got the brightness on my laptop turned all the way down which helps a bit, but after a while it gets too bright,things get blurry and I see double. I can get about 3-4 hrs of being upright and out & about before I'm toast.

Meds have been pretty straight forward. I'm barfing a little less with Oxycodone and it's helping with pain reduction by about 50%. I chickened out again on doing a Propranolol trial, the weekend prior was just to nice outside to be wasted on experiencing side-effects, and this past weekend I was feeling gross so I didn't want to punish myself anymore. Since I'm using Perry everyday it means I need to have it flushed with Heparin everyday. We decreased the dosage a bit because I'm a bit of a bleeder to start with and also because of the frequency that I'm using it. That's all going well, I've noticed that little cuts bleed more, and my mouth gets cut and blisters a little more easily than before but nothing crazy.

I've got some pretty insane cabin fever at times, but manage to get Jack-Jack out for an hour's walk everyday. I can finally didgeridoo again which makes me so happy, I was going a little crazy for a while. Otherwise things are getting better as I'm adjusting and wrapping my head around having two tubes. I'm starting to trust more, letting friends help and not worrying about being uppity and energetic when I'm drained. The things I'm having the hardest time with is not being able to work or being active. Those two things were my life, which means I still have a lot of work to do and need to keep trying to find new outlets and passions. When I'm laying around at home during the day I feel lazy, like I should be working and that I need to always be doing something productive. When I start my day with pain-killers or anytime I take them, I feel like someone who needs to be on Intervention. I dislike how I feel when I'm taking them, and wish so much that I didn't need them. Then I realize after not taking the meds that I am always in pain, I am chronically sick and I can't work right now. I guess I'm paranoid that people see me as someone who's taking advantage of the system and getting a free ride. It's not like having one of those "sick days" where some people skip out on work for the day. I would love to be able to work again.

Since most of our bendy posse sees a lot of the same doctors, we often are in the neighbourhood at the same time so we like to try and meet for a bite to eat. Toronto has some excellent food options for any GI or TMJ friendly diet.
Last week a bunch of us met for brunch (which we found out isn't the best idea for some of us) and later on in the week we met for Thai, and had lunch with the most delightful, almost 11yr old zebra. Right now everyone in our bendy posse seems to be holding their own, which is so nice after the insane summer we all had. A bunch of us have big surgeries coming up and I think we're all enjoying the stability and taking it easy. And just for fun, I'm going to leave you with quotes from our bendy sista' Tiffany who had her tonsils finally taken out after 3yrs of doctor fighting. I love that girl.

"I'm a bit cheeky, so I'm wearing a Dr. Pepper shirt that reads, 'Trust me, I'm a doctor' to my surgery ;-P"

"I am working on my relationship with my couch. It's important to spend quality time together."

"Rosanne is getting her own reality show. You know who would make an awesome reality show? Celine Dion. You know you would watch. You'd be ashamed and wouldn't tell anyone, but you'd watch for sure"

"I like my murse... He's taking good care of me." (In reference to her husband)

When EDS kicks everyone's butts!

If you've been wondering what's been happening in EDS land over here, I have 3 big posts in the works.

*I went to the 2011 EDNF conference with most of our Toronto/Ontario bendy posse. I Had the time of my life, and I think I can speak for a lot of the zebra's who went.
*In the last month, most of our Toronto bendy posse have been on ER runs and in & out of the hospital, myself included. In the last three weeks, three of our bendy posse sista's got an ambulance ride to the ER.



*Our Toronto bendy sista Natalie passed away. She's on the left in this one. We'll all miss her kindness, compassion and those big blue eyes.


I'm so lucky to have bendy friends in my life. We all laugh at the fact that we only met a year ago and for some of us a few months ago, but we already have such a deep connection and dynamic. We each play an important role in our group that enables us to hold each other up, and provides a safe place to land when we fall. We always find a way to make the best of some very hard circumstances and know there's nothing we can't ask of each other.


Even if we ask for help to "clean" a J-tube. In all seriousness, we will leave no stone unturned in a quest to help each other out.


"To my Zebras: it started out as an exchange of information. Doctor talk. OHIP talk. Pain in the $@&! talk.... But... what grew out of it was the deepest of friendships any of us had ever known ♥ "

(Christie)

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)

When you can't tell if it's a side-effect, or a dysautonomia crash and it scares the shit out of you.

As you can tell, it's been a blast and I've had the time of my life.

With the Zofran I only ended up with all the side effects, and no relief.
It messed up my skin and turned me into a bleeder, everything seemed so fragile.
Jerome 2.0 had finally healed and the burn on my butt was coming along. I started the Zofran, and my skin was not happy. I ended up with friction rashes from my clothes, heat rash, peeling skin on my hands, scrapes in my mouth and on my tongue from food that was "sharp", and Jerome opened up again. My skin also didn't want to tolerate IV's for more than a day at a time. There was other stuff going as well, but I don't want to get into it. Now, my skin is healing from all of it. When I was at Chateau Sinai in January, on the 2nd day my skin from the entire bottom of both feet peeled off in the shower, gross I know. It seems as though my skin hates GI meds.

Anyway, my quality of life sucked, and with symptoms being gross in a normal person; with ESD everything is so much worse on top of what we already have to deal with. For example the rate of healing is 6x's slower, and the rate of infection is 6x's higher. No to mention an incredibly low success rate with pharmaceuticals, and just about everything else. So on day 4, I decided to scrap the Zophran plan. We do have a couple other drugs that can be tried, but their side effects are more brutal. I've already tried the top 3 without success, and pretty much everything in between. This is the girl who's been taking stuff for reflux since age 11, slowly knocking them off of the list because they stop working.

For now I'm still feeling the same, and trying not to get discouraged...but am getting a little bit of respite here and there. The rest of my body is okay, my joints aren't happy but it's hurting Jerome to put them all back and I really want it to heal. I guess you should also know that my body is tolerating alcohol much better than food and fluids. I have NO idea why. I said "eff it" and went to a bendy party where vodka was my friend. I figured since I wasn't feeling any better, I might as well make it worth it so J had a few drinks. To think of it, I've never refluxed on it. Hmmmmm.

Then I tried the Scopolamine patch . It was a complete disaster, I only had the side-effects and no relief. Surprise!!!! It ended up being really scary because I thought I was having a bad dysautonomia crash, and was very close to calling an ambulance. I've never had to do that, and have never felt that shitty before.

Drowsiness, confusion and disorientation hit me pretty hard. I felt like I was in a constant state of coming out of sleep paralysis and really had to fight to stay conscious and oriented. I have sleep paralysis all the time, but I couldn't come out of it no matter what I did. I was also really shaky and weak.

Dry mouth was horrible, no matter what I drank, how much fluids I put through J, or how many tic-tacs, lollipops I consumed, I had insane pasties. It also made my secretions really thick and I was constantly choking on it. It wasn't just dry mouth, it went all the way down my throat and esophagus. I thought I had food stuck in there and nothing made it go away.

Blurred vision and dilated pupils were interesting. I woke up, and couldn't see in front of me. Everything was so blurry, I was seeing double and my depth perception sucked. I was really light sensitive and had a hard time looking at anything. The dark was my best friend. I had the brilliant idea to decorate my new neck brace with Sharpie markers, it looks horrible hahaha.

I was retaining fluids like it was nobody's business. I think I finally had to pee after 2L of fluids concoction...yeah a bladder isn't suppose to hold that much but I'm stretchable...

The spins and blood-pressure drops were insane. I had a really hard time going from laying to sitting, or sitting to standing. As soon as I did any of that my BP would drop, I'd black-out, sometimes fall, and was really dizzy. Then the tachycardia would start and I'd get really bad pain in my brain as my body was trying to get the blood back. Then I ended up with a killer migraine. I crawled everywhere I went, because getting up was so difficult.

All of those were side effects, but they present exactly like a dysautonomia crash and some of them like a neuro issue. Since EDSers are prone to blood-vessel rupture and all kinds of crazy neuro things, I didn't know what to think and was scared shit-less. When you've seen your bendy/dysautonomia friends go into complete autonomic failure ending up on life-support, or dying from ruptures, it doesn't take much to shake you up. I had 3 days of that fun stuff, and I never want to do it again. It's a good thing I woke up today feeling better, otherwise I would have gone to the ER.

As for the GI stuff, it's still all the same. Constant reflux, upset stomach and if I'm lucky I can get food to stay down. So it's looking like it's back to the drawing board, however I think taking a break from the pharmaceuticals would be a good idea right now. We've pretty much tried everything, and I'm tired of feeling extra-gross, it doesn't do anything for my quality of life. How strange is it that I actually get excited for surgery, that fundo can't come soon enough! First we have to find someone to do it, haha.

"Jerome just probably needs some more vodka."
(Bendy friend Tiffany)

It's a EDS Zebra Sleep-Over Party!

Once upon a time, princesses from the Ontario EDS posse got together for a sleep-over party. It was their girls night in, since going to the ball was not something they could do anymore. That's okay, because princesses can party like it's nobody's business in their own EDSy way.

Our wonderful hostess princess Chuckles decorated the ballroom with flowers, balloons, a whole bunch of disco-balls and accessories for everyone. It was also the night of the supposed "rapture", so the princesses wanted to make sure their fate was sealed.

She also made grab-bags filled with the perfect items for a zebra princesses spa.


The princesses were served the most delectable gluten-free cupcakes, they all had at least three.


Candy was also on the menu, commonly known as princess fuel.


There was talk of bacon flavored cupcakes and lip-gloss, all essential in a princesses day.



In a few weeks, these princesses will be going to Nakki's orthotist for a consult and casting to get some glass-slippers for Chuckles. Everyone else in the kingdom calls them AFO's. They aware that princess Nakki knows her stuff and won't take any crap. Hopefully, it will make finding those slippers much easier for princess Chuckles. Otherwise, they're going to have to deal with the wrath of princess Nakki and it's not pretty !!!


In the land of Baltimore last summer, the princesses were introduced to the Apples to Apples game. It was very popular among the other zebra royalty.


Guess which princess came out of nowhere and beat everyone. She's really a ninja in disguise.

Tiara's are a MUST at royal balls such as these.


The term "night out" is used loosely among these princesses. A night out to us, is a night out of bed and somewhere else besides the couch. (Read the label on the bottle)


Being a princess is hard, it takes some major dedication and team work to polish off all of those Jello-shots, there were a ton.


Princess Nakki met Princess Smiles last year after they both had appointments at the royal hospital. These princesses don't need much of anything in order to be comfortable, just a floor. They have laid down pretty much everywhere, including the time they went to see the Dalai Lama. When they were in the land of Baltimore for the EDNF conference, the princesses we so excited to see lots of other bendy friends laying on the floor. Cause' that's how we roll!


Bendy princesses firmly believe that hysterical laughter can fix anything, or at least make pain more manageable.

Then it was time to play a game called: Is This Normal?!
Princesses Nakki and Chuckles are definitely royalty as their feet were starting to turn a nice shade of purple. Blood pooling is awesome!!


Some of us lived off of cupcakes the entire time. This princess couldn't get enough of the strawberry icing, and thought it would be even better with bacon.


She wanted to fill the cupcake bling with bacon grease so it could be lip-gloss.


No longer a princess, but instead the Queen of Bacon!!

I constantly asked how I manage to stay positive and laugh at pretty much everything, when stuck in a body that is falling apart. Bendy friends are instrumental in keeping each other from going insane and giving up hope. There are always bendy friends to talk to at stupid o'clock in the morning because none of us really sleep. Going to bendy posse events, has got to be one of the best things we can do for ourselves. We don't have to try to pretend everything is sunshine and lollipops,we don't have to shield people from some of the really ugly stuff EDS can do, and we don't have to stand or sit in a chair. Being with bendy friends is the one time where we feel completely understood and are accepted as a whole package without any judgment,comments or criticism of how we're choosing to live. Bendy friends need each other because otherwise, we'd be totally lost and very grumpy. Not to mention being in the hospital a lot more. We essentially rely on each other to get info and advise so we can advocate, when nobody else knows what to do with us.

I think everyone in the Ontario bendy posse would want the same for other bendy's out there. Please go out and start your own bendy posse and get together regularly. Having support like this is priceless. It's like the conferences but smaller, a lot less overwhelming and more fun. Alcohol is also much more affordable, since it doesn't need to be purchased from the posh bar at the hotel. I don't think the posh bar serves Jello-shots either...

If this post doesn't make sense right now, it's because dysautonomia wanted in on the party and I'm super brian-foggy.

"We are all a little weird and life's a little weird, and when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual and call it love."
(Dr. Seuss)

Awesome GP does it again!!

I went to see Awesome GP yesterday to see what he could do,so I could get help with this GI stuff ASAP.

I won't bore you with details, but let's just say I've got it good!!!

Awesome GP didn't like the idea of me be being suck in the hospital getting fluids and things while I waited to get the fundo surgery. So he set up for home-care to come and hook me up. I'm at home with fluids and Zofran while he finds a young, open-minded surgeon who will take on me and my crazy body.


Another pump?! There's no way I'm going to use this gigantic dinosaur. I'm sure it's just as loud and obnoxious as the hospital pumps. I'm kicking it old school and using gravity! Then I can take my fluids anywhere in the house, and even hang the bags from a hammock. The poor delivery man was so confused when I wouldn't take the IV pole either.


Some needles, tubing, canula's, Zofran and fluids! I'm going to look like such a junkie after this...



I just finished packing up at box of supplies I don't need, and then got another one. Anyone want gauze? I have about 4yrs worth of it.


I got an "I'm proud of you" from my nurse today. I guess they're not used to having patients who are independent and can advocate like it's nobody's business. I didn't have to fight for anything today, after we cleared up the fact that I refuse to use the pump and IV pole, and we're doing this MY way.

The bendy posse is getting together again this weekend, so there will most definitely be a very entertaining/messed up post with pictures to come.

I also want to thank all my bendy friends for their advise and support. I've decided to scrap the TPN but still push for the fundo surgery. There's no way we'd make it through without each-other. It was so nice to talk with a bendy friend who's also getting fluids & Zofran at home, and kicking it old-school with gravity. It's because we're awesome :)

The simple things are really the finer things

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

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

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

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

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

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

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

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

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

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



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


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


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


Then we stopped for some desserts in the sun.



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


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

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


Nothing better than unwinding at the beach after work.


Happiest feet on the face of the planet.


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

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