Sunday, April 22, 2012

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)