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)

The pain in my......

Who knew an e-mail that was to be sent to my holistic medicine peeps, would turn into a blog post...It's time for another edition of copy+paste.

So I have absolutely no intention of coming off as a drama queen, or a whinger. I've been in an insane amount of pain since the hospital (it started when I went off the supplements), and haven't really slept since. It's hard sleep when you feel like the things they use to resurface a road is rolling over you. Over the last 3.5 days of living from the hammock, couch ,bed or tub I've come to a little revelation.If I could only take my own advise...

With all of regression I've had over the years, especially with the last two being really grueling, I'm thinking it's time to start looking at using pain killers in addition to our arson of super-powers. My stay at Chateau Sinai gave me a pharmaceutical that works and doesn't make me sick like all the others. It's Percocet...It takes the edge off (I only took 1/2 dose) and I can either crush it up and put it through Jerome or chew it.

I've had a bottle of it sitting around for a couple of years and have been terrified to take it. Fear was the biggest reason why I've done dental surgery and two J-tube surgeries without any pain-killers post-op. I guess the good thing about it, is now I'm not afraid of pain, and I can handle intense/localized pain with breathing and being still. It really comes in handy when anesthetics don't work or are dangerous. At the hospital I had a lot of time to think and process, and I've realized that this shit isn't getting any better and symptomatically I'm having a lot more bad days. Pain flares that were once uncomfortable joints and muscles that lasted a couple days at most, have turned into days spent laying on the floor puking at it's worst. As my joints have become more bendable and my tissues doing their own thing, holding my body together is exhausting and painful on a good day. There are days when I can almost function like a normal human, but they don't happen often. Absolutely every movement I make results in a painful consequence, requiring me to spend unnecessary energy evaluating, organizing and using purposeful movement to make it through the day.

Dysautonomia makes everything so much harder to deal with, because of my inability to always regulate sensory input and react to it normally. Some of the tricks that helped with pain no longer work, or are contraindicated. Hot baths are the best thing in the world, but dysautonomia doesn't like it, and having temperature regulation issues, tachycardia, blood-pressure drops and black outs aren't exactly safe. Or fun. Because of my insanely high pain-tolerance I don't really get much relief from my TENS machine anymore, things like ice and heat help but they're short-lasting and I burn or freeze my skin. Adaptive goodness helps, but an exoskeleton can only do so much and after a while braces do get painful. Treatments are my favourite thing,they're really effective and have saved my life. However, sometimes they're short lasting and at most take the edge off (on those laying on the floor puking days).

I think I spend so much energy on slapping a smile on my face,moving forward and finding possibility that I forget, or rather choose not to look back. That means I can't always gauge my symptoms over long periods of time. So many crazy things are happening all the time, I forget so much of it. During consults and follow-ups when actually I listen to what I'm saying, I realize that none of it is anywhere close to normal and it's not any way to live. Because I'm always in pain (except for when I'm floating in a warm pool) it's just part of life. What I forget, is that pain and exhaustion are not a normal parts of life, never mind the days spent in agony. There isn't much left on the "can do" list, and pain essentially makes me give up being able to really live. I don't ever expect to be able to paddle, climb, play soccer, work, taiko drum or have a real girls night out again; but I would like to maybe get back some of the things that aren't so out of reach. Things like being able to propel myself in a wheelchair, walk around for a few hours, more upright and unsupported sitting ,cooking and baking from scratch, writing more than a few sentences and just going out with my friends.

One of my bendy friends compared having EDS to being tortured everyday for your entire life. She's pretty accurate...I haven't really started on the osteoarthritis thing yet or all the craino stuff, and I know I have a lot to look forward to. I'm so fortunate and lucky to be only affected the way I am, when some of my bendy friends are running out of pain-killer coctails, getting spinal-cord stimulators implanted and even thinking of amputation. All because of pain.

I think it's time to swallow my pride, take my own damn advise and do what I have to. Start with the Percocet so I can live my best life.

As for the hospital stuff I'm getting a referral to a surgeon who does the fundo at Toronto General or Western I think...I don't know, I'm at them all for one thing or another. And I'm also getting a referral to a new GI specialist who I've been told is fantastic. I'm pretty sure I want to go with the surgeon on Hamilton though because he's bad-ass at fundo's and takes EDSers. That means he's educated in it and can keep me pretty safe. I'm hoping I won't need to advocate and be on top of things as much. This last stay there were 3 dangerous mistakes that could have been avoided if they took things more seriously and paid attention. 1) I wasn't getting enough fluids for until I raised all hell 2) They wanted to give me blood thinners (because they give them to everybody to prevent clotting), I'm a bleeder, spend just as much time in bed and am ambulatory. It was offered everyday. 3) Gave me test results that were from when I was inpatient in January and wanted to start a treatment plan from it.

I do NOT give the hospitals consent to:
1) Give me medication without informing me what it is, and asking if I want it.
2) Put anything up my ass.

Jerome is back to normal and taking the 300mls/hr and feeds with a little refluxing, but not the craziness it was before. Dysautonomia has calmed down as well.

I think what happened was the medications didn't do anything for symptoms and I reacted to them which made the dysautonomia even more crazy. Sound logical?
And now I just re-opened the wound, woot! At least this didn't happen in the hospital...

A bendy friend Barbra passed away this week. Our Toronto bendy posse friend Michele is fightin' like it's nobody's business, her intestine ruptured and most of it had to be removed. During surgery her spleen got knicked and bled out, so it had to go as well. The EDS and Dysautonomia community has been slammed in the last month, so in the words of my bendy friend Tiffany:

"Dear: EDS, FUCK YOU! YOU FUCKER!!"

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 :)

Coming back to life, it's totally possible.

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

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

Check out the video, it will explain more.



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

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

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

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

When you're neglected by a gastroenterologist...

I'm opening up a can of proverbial whoop-ass and writing this for the world to see. This is what happens as a result of being neglected too many times by a gastroenterologist (who will remain nameless right now). Let's' also not forget his unprofessional remarks.

I know that doctor's offices, especially specialists' offices and ER's are very busy places. I also know that I have really rare and pretty much un-heard of conditions. I'm all of my doctors first patient with Ehlers Danlos Syndrome and Dysautonomia. Because of the awesomeness of these two invisible conditions, they're really hard to diagnose and treat. I get that, all of it.

What I don't understand is how these people can just brush off patients and their symptoms, even when the patient provides information (also knows more about it than the doctors) and evidence that things aren't right.

Sadly I'm used to fighting with doctors. It has only happened a few times where I actually get listened to and not immediately dismissed. The only two people who've listened without a fight, and who are doing an incredible job advocating for me are: Awesome GP and the inpatient nutritionist at Mt.Sinai.

If you've been reading, I guess it's not news that I recently spent 6 days inpatient because of dysautonomia and J-tube issues. My gastroenterologist knew what was going on but didn't do anything. Awesome GP wanted me admitted to get it all sorted but when I went to the ER with a letter from him, I was sent home and spent the weekend getting worse. That case of neglect ended with me back in the ER on the Monday where I ended up being admitted after crashing pretty bad. You can read about it here: http://flexabilityandcreativity.blogspot.com/2011/01/day-mtsinai-was-joke-still-feeling-ass.html

After getting everything sorted part of my discharge plan was to follow-up with my gastroenterologist. I called and asked to book an appointment, where I was told that he felt no need to see me. I called back the following week and explained that it was part of my discharge plan, and that I also needed to get my tube changed and needed the go-ahead from him. The receptionist called back and said that he still didn't feel the need to see me, and that my tube was in the right place and didn't need to be changed.

It amazes me how he could use his x-ray vision and know this without even looking at me. No wonder he's doctor, he's got super-powers! Funny enough, every single doctor, tech and nurse I saw since getting my J-tube put in 3 months ago, said that it should get changed every 3ish months. A lot of people have looked at my tube since I've had 3 ER visits, a bunch of tests and a million appointments in that time. They all said the same thing....get it changed every 3ish months. This gastroenterologist of mine thinks that the tube can stay in for 5-6years. So, that's why he wouldn't put the papers through so I could get it changed.

Let's not forget that I have Ehlers Danlos and am at a risk for a lot of things. Part of my condition includes poor wound healing, issues with bleeding and anything else crazy. I am well aware of the fact that I'm his first EDS patient with a tube. I also know my shit about this condition and have had to advocate for myself every step of the way for the last 13 years.

Below is some writing from past posts about the difficulties and neglect I've encountered with this doctor.

This is when I finally convinced him that a tube would be a good idea
"His first response was this: "Well putting a g-tube in you will be difficult because you're fat, to put it nicely". Then I laughed in his face, and listed all of the reasons of why it would be a good idea. I think he got served a piece of humble pie because he agreed to not only do a g-tube, but that a g-j tube would be a better option (because of aspiration and autonomic issues). I think he realized he was not god, when he also said "This is a very strange request, but you have Ehlers Danlos, so it will be a first for me and is very interesting".

He was ready to book the procedure which is normally done in radiology, until I reminded him that people with EDS do not benefit at all from local anesthetics. He forgot (neglected to read over his notes) that when I had the gastroscophy/biopsy done I had to be sedated after 4 attempts with a local anesthetic. So now he's on a wild-goose chase to find a way to get it done under general anesthesia (which is my best friend), with someone who is comfortable dealing with EDS and all of the complexities that come with it.

He's still not convinced that I need to get the gastroscophy done every 6mts despite that it was requested from my geneticist at my last follow-up, and I have a family history of esophageal cancer..."

This is from when we were getting the pre-op paper work done, which made things a little complicated because of EDS.
"I will also be honest and say I'm a little terrified. The GI specialist doesn't really seem to get the seriousness of EDS and the issues that come with it. I feel like he completely discounts the fact that autonomic disorders are secondary to EDS, which is extremely frustrating. When I went to fill out the pre-op paperwork, he had already completed some of it. Apparently, I'm not at risk for having bleeding, cardio. and neuro. issues from the surgery. Hahahaha. That all had to get fixed. I made an info. pack for the anesthesiologist, so I'm hoping they do some reading, and keep a good eye on me. They're using general anesthesia, since locals don't work on this girl and I'd rather be completely knocked out and have the best nap of my life, than to feel everything and loose more trust in the medical community. I guess one of the things that really makes me nervous is potentially waking up with a subluxed neck (I just got over my last one) or more TMJ issues which is very probable from intubation. Barf!"

Apparently the paperwork didn't go through because I wasn't on any food restrictions, and it didn't get done under general anesthesia
"I was still being offered food today, even 10 minutes before the procedure. I didn't end up getting it done with general anesthesia, but instead with sedation and some locals. The techs putting in the tube were nothing but awesome. They read the info I gave them and were more than willing to do what made me comfortable. I could still feel a lot of it, as the locals don't really work on this girl, no matter what. I will say that having your stomach and jejunum poked and cut through feels really gross"

This was from the post-op follow-up that I had to fight for. He didn't feel the need to see me, despite it being in my discharge plans.
"I guess I'll start with the Jerome (gj-tube) drama.
Well it got infected, but I got antibiotics straight away and it's cleared up. The GI specialists said it was because A) I am "a little bit chubby". Hey, it's better then last time when I was "fat". What an ass. B) I have EDS. I say we're professional slow-wound healers."

Today I went to see Awesome GP because gastroenterologist won't take me. Last night I had blood (not a lot) coming from my tube and it was sore. It wasn't because of any abrasions, it was coming from the inside where it's still draining. I have an insanely high pain tolerance, when something hurts it means something is wrong. I spent the night on my back (which hurt the rest of my body) and it was the same this morning. Still bloody and sore, gross I know. Awesome GP put me on antibiotics and sent off the paperwork for another gastroenterologist and to get a tube change at a different hospital. I called this hospital, and they need paperwork from my gastroenterologist. He won't see me, how the hell am I suppose to get the paperwork, never mind a tube change. Are we suppose to forget that with Ehlers Danlos there are issues with tissue break-down, organ ruptures and bleeding? I'm also suppose to be able to trust these people? Yeah right....

I'm hoping this post will yield some results in terms of finally being able to get the appropriate care I need, and that others won't have to do the same. What if I were a patient who didn't advocate for myself? I would have ended up dead, no joke. If need be, I will start using the real names of hospitals, doctors and people who have been neglecting their duties as "medical professionals". Maybe the media would be interested in this...

My point in all of this long drawn out rant, is that everyone deserves a healthy life. This is the only way we can, so this is what we have to do. We don't expect anyone to know everything, but we really hope, you would be open to learning and being awesome.

"No one can make you feel inferior without your consent"
(Elanor Rosevelt)

Dear: Chateau Mt.Sinai 14th floor nurses and GI team,

Just so you know, you were fantastic and I really appreciate it.

Thank you for all of these things.

1) Taking time to learn about EDS in all of it's glory.
2) Joking around with me about it.
3) Being patient with my crazy body.
4) Listening to me.
5) Making good things happen.
6) Bringing me big cups of apple juice with lots of ice in it.
7) Using paper-tape.
8) Being gentle with my body.
9) Making me comfortable as possible.
10) Singing in the hallways.
11) Stopping in to say hi and have a lollipop.
12) Letting me be independent as possible.
13) Being open-minded.
14) Being compassionate.
15) Seeing me as me, and not just the girl with EDS.
16) Letting me see some of you, and not just the staff.
17) Speaking up for me.
18) Giving me space to hate the world when I needed it.
19) Letting me sleep in, mmmmmmmm sleep.
20) Bringing me 50 million blankets so I could hold my body together.
21) Helping whenever possible, even with my stubborness.
22) Respecting my decisions.
23) Teaching me.
24) Sending juju.
25) Being ninjas.

P.S. Thank you for taking part in my lollipop revolution :)

"Don't ask yourself what the world needs; ask yourself what makes you come alive. And then, go do that because what the world needs, is people who come alive" (Howard Thurman)

No room at the Mt.Sinai inn. What a joke. Still feeling ass-tastic.

Photo by: Angela Perry

All of those Dysautonomia and Jerome issues I was having didn't really resolve and instead just ended up getting worse. I'm still feeling really gross and vomiting when I put anything through J, especially first thing in the day and have reflux up to my ears, literally. The adrenaline rushes that were lasting until 5am every day were followed by almost constant tachycardia and low BP. I exhausted all of my options at home but was still trying to ride it out. For the life of me, I can't figure out how the hell I manage to vomit the exact same thing that I put directly into my small intestine? It doesn't make sense (not that EDS or dysautonomia do) and should physiologically not be able to happen at all.

I was at Awesome GP's today for him to fill out some paper-work for school, and to see what he thought of the J situation. He had been reading my blog, and asked around seeing what his colleagues thought of the whole thing. He thought pretty much the same, in that the Fundo is do-able but finding someone to actually do it would be next to impossible, and that considering EDS and all the other fun I have, it wouldn't be a good idea. But in theory it would work, thanks EDS.

I had been feeling gross with dysautonomia and we were talking about that too. He asked what I thought about it all.Last night, the thought did cross my mind, to get admitted to the hospital in order to get all the Jerome and dysautonomia stuff sorted out. I shouldn't forget to say that I had been calling the GI specialists' and have not got a response yet. Today instinct told me it was a good idea to get admitted and Awesome GP agreed, he was also lost for answers and wanted me to fight hard if necessary to get in. It would have been insane if they didn't take me.

He was nice enough to draft up a letter that consisted of something like this: "This letter is to certify that (blankity-blank-blank) has been unable to keep down fluids for almost 2 weeks. She is Ehlers Danlos Syndrome. She has recently had a J-Tube inserted but has been unable to put fluids through without emesis. In clinic today she presents with hypotension, tachycardia, and as such I think she warrants admission to reesestablish fluid status but to also further investigate her J-Tube digestion issues."

So I went home, to pack for a few days at hotel Mt.Sinai. On yeah, on the way home I realized that one of my AFO's broke. Awesome. When I got J put in, the hospital was not at all equipped to handle me, and everything that helps me is here. I was scared shitless at the idea of another stay there, as last time was horrible. I still have to finish writing about that big mess.

I got to the ER with my bags, the letter, my past-reports and some EDS/dysautonomia reading. I had the most fantastic triage nurse who was also awesome enough to joke around with me about EDS. I'm glad other people can see the humor and make light of it. I was still tachycardic and had low BP. She went to put an IV in, but had a hard time finding a vein that wasn't on a joint or in my hands that could be used. The dehydration didn't really help things either. She asked one of the other nurses for help, who ended up knowing me. And that IV got put in no problem! I still laugh at the fact that a most of them know me now...

When I got a bed, they were really quick. I saw the doctor right away. He kind of listened and ordered x-rays to see if Jerome was blocked, and I got some anti-nauseants. The x-rays came back negative and I was sent home. I still felt like ass and nothing got solved. Since he didn't know what the problem was and it wasn't am emergency, I couldn't stay. Awesome eh?

I did find the idea of hanging out in the ER for a really long time difficult. The usual time isn't a huge problem but this would have been longer if I were to have been admitted. There was a guy who was loosing his mind because he wanted Oxycontin, and a poor old lady who was really upset, but didn't have any functional communication. I wanted to sit with her, and hold her hand, but wasn't allowed. I'm sure screaming guy didn't help her feel any more safe...geese.

I mentioned again that I have dysphagia and choke on EVERYTHING, need lots and lots of fluids to keep the dysautonomia at bay, and that the J-tube problem was still there. I put most things through the tube!! What was I suppose to do? This is the answer I got... "Take little sips of water to keep you hydrated, and see your GI specialist." Holy negligence Batman!! Did he forget that I have dysphagia and that I've had aspiration pneumoina? So this drinking sips business, how is that more safe than getting fluids through an IV, for both dysautonomia and dysphagia?

My blood-work came back normal, which is no surprise at all considering I have dysautonomia. I told the doctor that almost all tests come back negative, but that doesn't mean that something isn't happening, it's dysautonomia. He wasn't buying it. Oh, I also got a prescription for some more anti-nauseants. Yeah, because that was going to fix everything...holy band-aid solution Robin!

I left very livid, but too tired to fight. These last three weeks have been nothing but fighting with Jerome, dysautonomia, and what EDS has taken away. I'm exhausted in every.possible.way. Yesterday, I officially took a break from being "tough stuff" which is one of my nick-names. I am so tired, need to just "be" and maybe break some plates for fun. Finger-painting, and breaking shit is the best therapy ever!

So, I'm currently sitting in bed finishing off this post, still feeling like complete ass. I managed to eat and drink for the first time in 24hrs, and yes I did choke a bunch of times. Yes, I still feel barfy and yes, I'm going to still try to feed Jerome. I don't really have any other choices except the hospital,but there's no room at the inn for this girl. At least not tonight. Really, do I have to crash hard enough to come in by ambulance to get this stuff sorted with out negligence? So, this weekend will be spent in bed. Wonderful. I'll be back there soon enough, it's not like it will magically get better on it's own, although that would be pretty incredible.

" I would like to point out that Stan Lee's new TV show would classify us with Ehlers Danlos as Superhuman. We would be Mr.Fantastic, I checked it out."
(A bendy friend)

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)

A lot of firsts, and Clothes & braces part 2

Sitting in the world's most comfortable bed, and eating a bowl of ice cream.... I am doing that right now and it's wonderful.

I guess I'll start with the Jerome (gj-tube) drama.
Well it got infected, but I got antibiotics straight away and it's cleared up. The GI specialists said it was because A) I am "a little bit chubby". Hey, it's better then last time when I was "fat". What an ass. B) I have EDS. I say we're professional slow-wound healers. Tape is driving me INSANE, even paper-tape leaves epic rashes. A week after J got put in, I started sleeping without any thing on my skin to let it air out and heal. It was all fine until one morning, I woke up around 2:30am with the tube pulled down to my knees. There was a brief "holy shit!" then I cleaned J off, and put it back in. I was tempted to go back to my nice warm bed, but decided the ER would be a sensible idea. It was already infected, kept coming out, and I wasn't sure if it was back in place. The last thing I needed was to mess up the rest of my GI system. The ER doctor was excellent, we tried to flush it but it felt really weird. He ended up ordering a new gj-tube to get replaced a few days later, but I was not allowed to use the tube. Having to go back and ingest things that tasted gross wasn't fun. I went in to get the tube replaced and was ready to fight after my disaster of a hospital stay for the tube. It turned out that the doctor doing the procedure was a vascular surgeon, who knew a lot about EDS but I was his first type 3. He did a fleuroscophy first to see where J was, and what the problem was. Well we found out there were no problems. Apparently I was thinking straight when I cleaned up J and put it back in. Take that EDS!!

I've learned that I still can't eat anything in before at 1pm at the earliest. Also, that I need to put stuff through tube before anything in my stomach. Otherwise I end up puking, and whatever was in my stomach will not stay down.


Now for braces and clothes part 2.
A friend of mine had an extra ticket to the ballet tonight and thought I'd like to go. He was most definitely right. Yes, I can be a total girl. I used to go to the orchestra quite regularly. Trying to find clothes that could still fit was an adventure to say the least. I have three pairs of shoes that I can wear with the AFO's. The pair of skateboard and purple shoes would not be worn to the ballet. That left me with some black, but good looking men's shoes. Long gone are the days of wearing a cute dress and heels. I had lots of pants to wear, but they were all too big because I lost weight from dysautonomia, and they were too long as I used to wear heels with them. I found a pair that was once too small (so glad I had them) but they were too long. The Leuko-tape that sometimes holds my joints together was put to good use. This was the first time that I got really anxious and self-conscious about my braces. Luckily I got a quick pep-talk from one of the most awesome bendy friends and I was ready to take on the ballet. The show was amazing, I'm glad I didn't chicken out.

I have complied a pretty big list of all the different places that I've laid on the floor. It even included the time when I went to see Dalai Lama. The ballet is not a place for that. Staying upright for that length of time was difficult and uncomfortable. Maybe my body isn't cut out for that kind of thing anymore.

I still have to sort out the mess that went down at the hospital for my gj-tube placement, and for a few other things.The whole experience has pretty much sucked the life out of me. Apparently western medicine still really messes me up in the head. There are a handful of people in that group that I do still trust and they know it. Haha, no pressure for them! Awesome GP has gained about 10,000 points this month, I'm so glad to have him.

"Do you know the muffin man?"
"The muffin man?"
"The muffin man!!!"

(Shrek)

ER visit # 3 in 2 weeks, Holy annoying Batman!

Guess what I spent the afternoon doing?
Guess what they gave me?

I think today was a result of having a subluxed neck (slowly recovering) and dysautonomia issues at the same time, both are hard to bounce back from on their own, combined appears to be a recipe for disaster.

I thought after Friday's fiasco, that I was all sorted with some new natural liquid add-in electrolytes, and spending the entire weekend in bed. Nope.
I did improve and felt like I was on my way to feeling human again, but when I woke up this morning after sleeping 10hrs, I felt like death.

Yesterday I was able to hold down a meal's worth of food and about 2.5L of liquids.
This morning, not even the electrolytes would stay down, my heart was a little nutso any time I changed positions, dizzy, sweaty, on and on...dysautonomia.

Got 1L of fluids and 50mg of Gravol(IV)
Blood work came back normal (surprise!!!, they never believe me that it's dysautonomia and not some crazy bacteria)

Was a pretty successful trip, didn't have to fight with stupid dr's, didn't need to chew up any gross meds, scored a bed right away and.....I got to take out my own IV, it made my week :)

I got the usual "Well since you know more about this than I do, you know when you need to come back for fluids..." and was discharged.

Funny enough this morning, the GI specialist called to say that they've bumped up the gj-tube surgery (no date yet)...I'll be calling them again to see if they can move it up sooner. Just think...I can push fluids through my own tube and avoid the ER all together.

Dysautonomia has slammed the EDS community this past month. Almost everyone I know, in person and online has been in the hospital or ER because of it. I was on facebook chat this morn. with one of my very close bendy friends who's stuck in the cardiac ward of John Hopkins with POTS. They can't figure out what to do with her :( If it weren't for social networking, and us being pro-active we'd probably all be dead by now. Thank you Facebook

http://www.youtube.com/watch?v=CmyUkm2qlhA

For all by bendy friends who's asses are being kicked with POTS and whatever else, Just keep swimming and fight like hell.

EDS+ Dysautonomia + Mt.Sinai ER ='s AWESOME!!

I guess, you weren't expecting my title to be so enthusiastic, considering it's contents.

I spent Monday afternoon in the ER due to dysautonomia craziness.
The weekend was fabulous, I had energy, low pain levels and felt like a relatively normal person. The exception was that I didn't really sleep the entire weekend. My body wouldn't let me, with the almost constant adrenaline rushes.Monday morning, I woke up feeling gross. I had the text-book EDS type 3 autonomic (over-response) issues. Upset stomach, dizzy, feeling faint, exhausted,sweaty, elevated heart-rate, palpitations and just all around gross. I decided to go into work and was sure I could make it through. Definitely thought wrong.

On way to work... barf! So that was the end of work,I knew it it wasn't going to get any better. Last time I felt that way, it lasted more than a week. My suspicions of an ANS disorder were totally confirmed at the EDNF conference. I figured I would be smart about it, and head to the ER to get myself sorted out. I ended choosing the hospital where my geneticist and GI specialist worked out of, figuring they'd already have some of my stuff on file. I went in, and didn't have to wait. Handed the triage nurse my OHIP card, my card from the hospital and the EDS info card form the EDNF. http://www.ednf.org/index.php?page=shop.product_details&flypage=flypage2.tpl&product_id=18&category_id=12&option=com_virtuemart&Itemid=88889131.

The triage nurse was eager to take the card,do some quick reading and let me explain it to her. They got me a bed, and I saw the ER nurse to get vitals and blood work taken soon after. My HR was 114 and my BP was 138/96.My ECG synus rhythm came back irregular, and my WBC's were a bit elevated. I asked the nurse if the IV could at least be done in my hand, so I was free to move my arm and wouldn't dislocate everything. She said she'd try it, and also take a shot the blood-draw through the line too. She totally rocked it and did the it all in one shot! In the meantime, the Dr. was doing some quick EDS research and saw me shortly after. He asked me all about the symptoms, how it's normally treated and what I wanted to do. How awesome is that?! I ended up getting 1L of non-saline fluids and 50mg of Gravol through the line too. I had a little laugh to myself, when there were people thinking the world was over because of a sprained ankle. At one point asked an other nurse if there were any extra pillows I could use to position my body, so everything wouldn't dislocate. They didn't have any, but offered me as any blankets as I wanted, and we'd fold them up. After I got myself positioned, I had a bit of a nap and woke up to realize that my fluids were only 1/3 done. The fluids and blood draws took forever...EDS thing? A bunch of text message conversations and a nap later, my fluids were done and I was ready to go home. I finally felt human again and was ready to jet. They took my vitals again and my HR got back down to 65 and my BPwas 111/63. The Dr. thanked me for my patience, and for knowing about my stuff with EDS.

Not once in the 5ish hours that I was there, did I have to fight, make any request more than once or try to prove myself. I was listened to, taken seriously and treated with such awesome care. That was the first time in 13 years of dealing with this EDS mess, that any of this good stuff has happened. It was incredible, and may have renewed my faith (just a little) in the western medicine community. I had the best sleep of my life that night!!

The next day, I ironically had an appointment with Awesome GP so we got to catch up on everything post-conference. He was really interested in the whole thing and I think finally understood the complexities of EDS and autonomic issues. I gave him a print out of the Sleep/ ANS disorder discussion from the conference, he seemed pretty excited to check it out and learn more.

So when a cardiologist refuses to see you and says "there's nothing wrong with you, you were fine last year, so you're fine now", your body will eventually prove them wrong. Synus rhythms don't come back irregular for nothin'.

Know that despite all the horrible experiences we encounter day in and out with doctors and other medical professionals, there are some awesome ones out there and they kick ass!

Thank-you Mt.Sinai ER!!!

"No one can make you feel inferior without your consent"
(Elanor Rosevelt)