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)

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)

Photos of some things EDS

I am well aware that this blog is lacking in the photo department, at least I think so. So here's EDS in some of it's glory. Enjoy!


Jerome and the Holter are ready to party! Having the gj-tube and all the wires were a huge pain in the ass. Glad it was only for 24hrs. 4 days later, and my skin still isn't happy from all the tape.

Jerome and Holter...Trying to conceal a tube and all the wires was interesting. Eventually I stopped caring, and if people stared, then I hope they got freaked out, haha
A combination of a Al-Greens mix, Iron, Zen Theanine, Fish-oil and salt water. Thank you Jerome, I don't need ingest any of this nasty stuff anymore.
The one good day without any tape rashes in the last two weeks.
This was the piece of paper that has saved me from a TON of fighting with health care providers. I made EVERYONE read it, before they did anything to me or asked questions. It was a life saver.
My new best friends. I was originally going to get the Koi fish tattooed on my leg but then AFO's came along, so this is my plan "B". The Celtic tree of life didn't turn out as originally planned but I think I like it better this way. The Koi is symbolic of perseverance in adversity, and strength of purpose. Also courage and ability to attain high goals. The Celtic tree holds the meaning in balance, strength, longevity,rebirth, life force and interconnectedness with the universe.



The shoulder that dislocates a million times each day. Multi-directional instability, dislocations happening with a 20 degree flexion woot!

Apparently I angered the gods...Dislocated it typing, while yelling at my computer.


I do not enjoy having bendy fingers, it makes everything difficult and I haven't found any advantages of it yet.

I had no idea feet weren't suppose to bend that much...

The classic bending over with straight legs and palms flat on the floor
Didn't know that was abnormal either...I thought everyone could do that. Before the AFO's I walked around with my legs pretty close to looking like that, turned in a little less. Yes, my hips are a mess.
One of my favourite tricks, because the look on people's faces is priceless.
That's how I find myself standing with out supported ankles. Yes, I will forever have horrible tan-lines.



There are more pictures floating around somewhere...I'll get to it another time when I'm stuck in bed.

Moving at warp speed: AFO's, surgery and life all at once

Where to start....

Well, I've got my AFO's and they're awesome!
Originally, had wanted them to be short and hinged. When I went to pick them up, they were tall (or I guess standard size). The orthotist thought it'd be a smart idea to keep them tall and give 'em a try before cutting them down and loosing the option of going back. Stupid me, never really thought of that. I'm an impulsive and rather stubborn person. I get an idea and go for it without looking back. The idea behind keeping them tall, was to help with the knee hyper-extension. I put them on, stood up, and my knees hyper-extended. Scrap that plan, EDS had other ideas. I decided to give it a few days, sleep on it, and see if I could get used to them. Two days later, I was back getting a bunch of modifications. I had somehow managed to pull my calves, which is pretty much impossible. My legs are always tight, I'd love to be able to stretch them but I'm just too bendy. The only time they get a stretch or dug out is when I'm at the chiropractor and she goes in with the elbows. The fact that my legs were stretched and sore from the AFO's was not a good sign. We ended up cutting them down to the same height as my PUSH braces I had before hand. A bunch of padding got removed and some added to other places. I got the bottoms completely padded, along with some supports put in where my toes meet my feet. It was gross walking around feeling all the little bones slide around, they needed to stay in place. Now, I have some bad-ass AFO's. My ankles are stable, and I don't internally rotate my hip nearly as much. When I do walk with my leg turned in, I can correct it and maintain it. One of my friends noticed straight away how much better I was walking.

I only ended up with one pair of shoes that fit, and still have to part with 18 other pairs :(
Luckily, a friend went shoe shopping with me this weekend, and I came home with 2 new pairs. I'm glad she came with me, as I probably would have had a meltdown over shoes if she hadn't helped keep my head on straight. It only took 4 hours and a million fails, but we did it. The coolest part of this so far, is that I was able to walk around those 4 hours without any problems. Nothing really hurt, and I still had energy at the end of the day. There's no way I would have been able to pull that off before, my limit was about 1.5 hrs. So, even though they're bulky, hot, and sometimes bring unwanted attention, I.LOVE.MY.AFO's.

Surgery...that's happening in T-8 days. Yep, pretty soon I'll be able to "eat" anything nasty via gj-tube. I'm really excited at the thought of being able to avoid the following things: blocking my airway, insane reflux, vomiting, TMJ pain, and getting pneumonia from aspirating. 4 times in 3 years is enough for this girl. It should also help keep me out of the ER when the dysautonomia gets crazy. 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!

So far, the hospital seems to be taking this EDS thing seriously, and for that I am thankful. It's going to be really inconvenient and I'll probably go crazy from boredom at one point, but it's better than being neglected. I've got to go in 24hrs before to be admitted...They don't need to run any labs or tests since they have everything on file from my ER visits. No complaints about avoiding blown-out veins. I hope the nursing staff understand that I'm not a princess when I ask for 5 pillows, to keep my joints in place. I almost managed to give myself a little panic attack when I realized that going outside as I please, won't be an option. It's going to feel like jail. I need to be able to go outside, it's the one thing in life that keeps me sane. Maybe my friends can help me escape when they come visit.

I've been very fortunate to have friends offer their help with whatever I'd need. I've got one friend who's going to be my "person" when I'm in surgery. I'm going to leave her with a bunch of EDS info, and I know she'll advocate and raise hell if need be. I've got some other friends who are going to bring me some yummy, non-hospital, wheat-free food. Mmmmm. So far, it looks like my bases are covered from visitors, to food and everything in between. This weekend will consist of pre-cooking meals and getting everything together. I am determined to recover comfortably with minimal stress and good food. It's a bit ironic how I keep obsessing over food, when I'm getting a tube put in me because food isn't much of a friend. The one thing I'm not worried about (yet) is pain control. I know that if it can't be controlled with meds, which shouldn't be a problem, I'll still have my super-powers and juju coming from my friends.

The year seems to have flown by, and now I'm thinking about my plan "C" and what it will entail. It's a new beginning which I am very excited for, but it also means another end to something I love but have had to give up. I'm really going to miss my current job. There is so much magic that happens, and I've never gone a day without learning something. Every work day contains fun, discovery, mastery of a new skill, a good laugh and some of the most innocent moments life has to offer. I wish I could bottle the stuff that my work is made of, the world would be a happier place. I get paid to play, finger-paint, teach, eat ice cream, go to the beach and so many other awesome things. I have no interest in a desk job, none at all. Not only will I be sad to leave the kiddo I've been with almost every day for 2.5 years, but it will also signify that I have officially given up the last thing that was still on the "can do" list from before things got bad. Thanks EDS.

I'll have some pictures of the new bad-ass AFO's and body-piercing. I've already come up with some ideas to make the tube look cool, and if not, funny. Life is too short to dwell on the silly things, we need to find the fun and run with it.

P.S. T-2 days until I see the Dalai Lama. I'm going with a bendy friend, we scored accessible seating, a first for both of us, should be interesting. He's doing his talk on Approaches to World Peace. Sooooo excited. The place is going to be packed with juju and everything good!

baby steps...

Hello,
Happy Friday + Long Weekend!!!

I've managed to avoid the ER for the last 9 days and it's been wonderful.
Things in the land of Nicole have been a bit crazy, but when isn't it?

My neck is almost healed, it's still a bit crunchy, unstable and sore but nothing like it was last week. I'm not using my c-collar as it's painful, which is a good sign. This time around, recovery has been rather quick as the previous neck subluxes took 3 weeks and this time it was about 2 weeks. I think it may be like the rest of my joints in that the first bunch of times I injure something, recovery is a lot more slow. Maybe I don't really recover but somehow learn to adapt.

Dysautonomia....it's coming along...slowly.
I can handle about a meal's worth of food and 2 snacks in a day and that's about it for now. It's a huge improvement from before, when I'd go 24 hours without anything before I realized that I hadn't eaten. Anytime I do eat, I still feel nauseous and gross but at least it stays down. I still sometimes feel dizzy/faint and my heart is a bit funky still. Apparently palpitations and high heart rate are my new normal when I go to bed. I'm also better able to regulate my temperature. There have been major improvements in the fatigue department. I'm no longer dragging myself from bed to the couch and back again, and can almost function like a normal person (who has EDS).

Sleep, it's a work in progress.
The neck sublux and dysautonomia completely threw that off. I have a bit of hard time winding down and getting comfortable enough to fall asleep. It hurts my neck still, my heart goes a little nutso on top of the normal pain that keeps me up. It takes about 1-2hrs to fall asleep and I'm up between 3-5 am for a while. My room mate thinks I've been sleepwalking again as she found crayons in the middle of the living room floor, I say it's house trolls. I found out there's a family history of sleepwalking on both sides of the family. Awesome.

GJ tube is becoming more of a reality and getting closer. After the 3rd ER visit I called them again and asked if there was a way to get it bumped up. Well 8 days after, I've got a consult with the anesthesiologist. Kind of terrified that they won't know what to do with me, or will not take this EDS/autonomic stuff seriously and mess up (because it's happened). But am very excited to be able to push anything that tastes gross through the tube, along with avoiding pneumonia from aspirating. How cool would that be?!

I ran across this stat in last week's episode of Grey's Anatomy and did a little research. The odds of getting struck by lightening is 1/6,250 and the odds of having EDS III 1/5,000-20,000. I should start playing the lottery.

I'll have my new legs (AFO's) in T-5 more sleeps, and am going to see the Dalai Lama in 15 more sleeps! Take that negativity!!

"Duct tape is like the Force, it has a dark side, it has a light side and it holds the universe together."

So close I can taste it

To be feeling human again, I'm so close.
It's been nice to be able to play my didgeridoo and sing at the top of my lungs again.

Although the last two weeks have been nothing but miserable, my recovery from the neck sublux has been rather quick. I had to wear my c-collar for about a week and a half, and it took about 8 days for the migraine to leave. For me, that's a new record. The previous two subluxes have taken more time to recover both lasting about 3 weeks. My neck is still crunchy and the muscles in my back and neck get tight but that's about it. Things are still a little unstable but it's gotten to the point that wearing the c-collar is uncomfortable (which is a good sign) and I'll take it.

As for the dysautonomia, things are progressing, just very slowly. I'm now able to eat and hold down a meal's worth of food and a snack for the day. I won't say it's easy to eat, because it's not. I get hungry but dread eating because I still feel gross after putting anything in my stomach. At least I can keep it down with only a bit of a struggle. That's huge considering I'd go 24 hours without food before I'd realize that I hadn't eaten. I never thought in a million years that I'd have to make myself eat, I love food. For the first time I think I fully understood what it was like to look at a plate of food, feel the need to cry. Yep, food can be overwhelming....weird eh? Knowing your favourite thing is sitting there waiting to be eaten, and all you can think of is how you're not the least bit hungry, even though it's been over 12 hours since you last put anything in your mouth. Or, how you know eating anything will make you want to barf no matter how good it tastes. Lastly, how consuming a normal portion of food seems like an insurmountable task with some major consequences.

My eyes have always been bigger than my stomach, but now it's become very apparent. On two occasions, I've gone out for Thai. Mmmmmmm my favourite thing in the world. I figured it would be a good motivator which it was, kind of. I'd order the usual spicy coconut soup (it's soooo good) and a main dish. Well, I can down most of the soup and about 8 bites of whatever else and that's it. After that, the thought of eating any more churns my stomach, but it's soooo good. The added bonus in all of this is that my grocery bill is a lot lower and I've got less dishes to wash.

In other dysautonomianess, my heart still likes to go all over the place, I still get the occasional bout of spins, feeling faint or like I need to jump out of my skin. The good thing is, that I don't feel like death anymore and haven't dragged my body from the couch to bed and back in a few days. My naturalpath suggested trying a greens vitamins powder mix to at least keep my body going with that. It tastes pretty gross, and mixing it with juice is a must, but my body was very happy to have some vitamins. I know that if I don't eat enough fruit or veg. my body starts to turn on me, I feel gross, get very cranky and will demand vegetables at any cost. Strange, I know.... That greens mix is currently my best friend. It also dissolves pretty well which will be nice for when I finally get the gj-tube.

Speaking of which... I called the GI specialist's after the 3rd ER visit to see what they could do. They've already got the ball rolling, and I've got a consult with the anesthesiologist soon (no actual date yet) then they can go ahead and put the tube in. In a sick and twisted way, I'm so excited to get it in, it will make life so much easier. I feel like a kid in a toy store, with thoughts of not having to chew up and swallow anything that tastes gross. I can just put it through the tube!

T-8 days until I get my new "legs" or rather AFO's!!! I'm really excited to be able to walk and stand with everything in it's place and not stretching the crap out of the tendons and ligaments. The only thing that makes me a little nervous is having to adjust to another brace, and dealing with even more gawkers, or people who will feel the need to tell me that jesus loves me or some crap like that. Ya know, cause I'm the poor disabled girl. I know they have the best intentions at hand, but doing that is ignorant and rude. I'm sure they'd be offended if I told them my pretty liberal thoughts about the world. I bet if I were a visible minority, nobody would say anything like that to me. I guess the other thing I'm not excited about is having to look in the mirror for the first time with the AFO's on and get a smack in the face with reality, knowing that it's not something temporary like all my other braces . Just another piece in the acceptance puzzle I guess. Getting rid of my current shoes, and having to find some new ones wont' be fun either. Options are already limited, so trying to find something that will work with huge hunks of plastic and metal will be a major undertaking. I've got some friends who said they'd come find shoes with me which is most awesome of them. I just hope I don't have a melt-down in the store when I see a pair that I love but can't wear anymore. The stupidest things set me off.

I'll just throw this in here, because it's rather interesting. One of my friends who worked with me, just got diagnosed with Loeys Dietz Syndrome. When we were working together, we both knew something funky was going on with our bodies and it strangely ended up that we both have a connective tissue disorder. This is what kind of makes me laugh. The odds of having a EDS III are 1/5,000-20,000. The odds of getting stuck my lightening are 1/6,250. Seriously?! I got the idea for this statistic from watching Grey's last week with my bendy friend. One of the characters pulled out the stat. of getting struck my lightening, we both looked at each-other and laughed. I looked into it and yes, the odds of getting struck by lightening could potentially be higher than ending up with EDS type 3.

" When written in Chinese, the word "crisis" is composed of two characters. One represents danger, the other opportunity."

In All Honesty

This is a long and honest post, I hope you’ve got a drink and some time.

In all honesty, I'm so done with EDS, I've had enough and don't want to play anymore.
I hate cold and rainy days. This is why.............
Those are generally the days when I feel both physically and emotionally exhausted.
The combination of cold and rain is always killer. It feels like my bones are being mashed together and I'm being chewed on by some big invisible jaws. It doesn't seem to matter if I get 3 hours of sleep or 11 hours, it all feels the same. There's not much that can relieve the pain other than heat, sleep and acupuncture. The clock seems to tick at a much slower pace, most likely because I'm counting down the minutes until I might be able to get some relief.
Sleep is often hard to come by, everything hurts and nothing feels remotely close to comfortable; it doesn't matter how tired I am. If I do get relief, it is often temporary but enough to allow sleep. A lot of these days are spent in bed, when I could be working and doing things I love.

For the most part, I think I deal fairly well with this whole EDS thing. On the cold and rainy days, not so much. It reminds me of how much I really hate EDS. I hate how complicated it makes everything. I'm all about keeping it simple so I can truly enjoy the other things life has to offer instead of worrying about details. With EDS nothing is simple, and nothing is ever the same, even from day to day.

Eating isn't simple anymore. I have to think about what I'm eating and weather it will make me reflux, if I am able to chew it, and finally if I can swallow it without choking. Some days are better than others. If I slept too long in a certain position then my jaw will be subluxed more than normal which will make chewing and swallowing even more difficult. If my hormones are crazy, my whole entire body becomes a loose mess and then I lack in the swallowing department because my muscles are a little more weak and everything is loose. That's at least 4 things I have to take into consideration just to eat. When I finally get to eat, I really have to concentrate on what my body is doing so I don't choke. I've got dysphagia, and have had pneumonia 3 times from choking and aspirating. Never mind about what I feel like eating. I live in Toronto, one of the best places to eat food from anywhere in the world and a lot of it is on my "restricted" list, because there will be definite consequences. Luckily Toronto is also a mecca for Nakki friendly foods.

I don't know about you, but comfort is my #1 priority when I'm not feeling well. On the cold and rainy days I will often be walking around in sweats or pj's. Oddly enough it makes me sometimes feel worse. It could be that whole "look good, feel better" phenomena; whatever it is, I still have yet to find something that is just as comfortable as pj's but looks like I could leave the house in it. For me, what I'm wearing is a pretty accurate reflection of how I'm feeling both physically and emotionally each day.

I dislike constantly going to doctors appointments. It's time consuming, I don't get income when I'm there because I'm not working, and it's always bad news. It's not like I'm looking for some kind of cure, but to maybe have something figured out would be nice. It would be a great change from the usual, not knowing what to do with me. I hate that I'm not really listened to, and that I automatically have to switch into self-advocacy mode to get anywhere. I hate that my decisions to use natural medicine aren't respected. I get told it's a bunch of crap,handed a prescription for all kinds of pills and told "good luck" because there's nothing that can be done.

I hate how everything gets worse each day with no plateau in sight. My ankle braces are shot. I've blown through them and they don't work anymore. I went to a consult to get some AFO's and it was interesting to say the least. The person assessing me had no idea what EDS was, (I don't expect anyone to know...) or where to start. I walk with my right leg turned in, as a result from countless hip subluxes and dislocations. She knew what to do with my left leg, but the right one was causing problems (very understandable) . She wanted me to come back the following week for another opinion. I think it's great that she didn't jump in head first and wanted to learn more about EDS. What is annoying, is that it has to happen in the first place. Really, why can't it be simple ? Next comes the application forms to fund these stupidly expensive braces. I have to hope that my diagnosis warrants enough merit to get the funding from people who probably have never heard of EDS. Haha that's just for my ankles, forget about the rest of my body that doesn't work.

I hate how much money I have to spend to keep symptoms at bay. I don't have a job with insurance, and most policies won't cover natural medicine. If they do, it's usually only a small percentage. Chiropractic and acupuncture treatments are expensive when you're getting one every week. Then there's the costs of seeing a psychologist and a natural path. The cost of vitamins and supplements add up, and don't get me started on food. Trying to find things that don't contain meat, wheat, dairy, corn, or preservatives isn't hard, but it's expensive. I will say that I eat like royalty, and food is a huge priority for me. When I eat what I'm suppose to, I feel so much better. It's a good thing I'm not picky and love to cook.

I love what I do for a living. Who wouldn't want to be able to play at work? I'm really having a hard time with the fact that it probably won't be lasting much longer. I know I should give up one of my jobs but I'm not ready. It's also hard to find an employer who will take someone on who needs a flexible schedule. I need to take time off for appointments, flare-up and injury days. I don't ever want to start at a job where my employer has no idea of my EDS. Also, who's going to hire someone who will have all kinds of needs that keep changing. I can't get a desk job because I'm not qualified for anything, and sitting is one of the worst things I can do for myself. I have no choice but to go back to school, which I will gladly do. I'm hoping that I will have the same passion and drive for my next career as I do now.

I hate how much EDS has affected my relationships with people. I've lost friends, because they don't agree with how I've chosen to live with it. That's pretty epic on my "things that upset me" list. There aren't many people who actually "get" it, and it just plain sucks. I feel so miss-understood and frustrated. I don't want to give up opportunities to be with my friends, but I don't have a choice when I'm not feeling well. I know that when I've had a pj day, getting out and doing something isn't going to happen. I'd love to do anything but stay in and lay around but it's not an option and it sucks. Dating, well that's become a bit complicated too. It's not like I can leave EDS out and not have it come up. I walk with my leg turned in and I wear braces on my joints....It's pretty obvious things aren't right with me.

I hate feeling powerless and just having to ride things out. I have no control over what's happening to my body and I have to deal with it as it comes up. It would probably be easier if pain flare-ups were less frequent and intense but that's not the case. I decided that I won't have my own children. I did the research and it's not a risk I'm willing to take. I don't like the idea of genetic Russian-roulette. Additionally, it has the potential to be really dangerous for baby and me. I know how my body reacts when hormones change, and it's not pretty. All hell breaks loose, and I feel like I've been hit by a truck. I don't even want to think about what being pregnant would do to my body. Even though, I chose not to have babies, it wasn't something that was easy. It's a primal instinct to want to have children, but I feel like it was also choice that I had to let go. It wouldn't be fair if I took the risks and they didn't work out in everyone's favour.

I hate how my entire life has been taken over by EDS. There are always consequences to every action. I miss the days of minimal joint pain, few dislocations, and simplicity. I essentially miss my old life. It was the one that didn't restrict me in what I could do, the one that didn't revolve around appointments and the one where I could be spontaneous.

I’m a believer that the world offers so many incredible and enriching experiences, waiting to be explored. I also think it is up to us to leave some kind of foot print; a positive one. All the places I want to go involve a back-pack, and are off the beaten path. I always dream up these adventures that would give the essence of how people live off the land and simply, but happy. I want to explore different cities, country-sides, and isolated communities to just take it all in, and experience it as locally as possible. I want to volunteer and provide hope for people who are stuck. Now, here’s the reality check of what’s really happening. The majority of what I just talked about will not be possible. It’s a hard pill to swallow and it happens all the time. I know there are ways to make things work, and that other doors are open but I don’t want to go through them. This is one of the biggest things I get hung up on. I have been dreaming of doing things like this since child-hood. This is where simplicity would be nice.

Now that I’ve got that out of the way, there have been good things happening as well. This is where I’m focusing my energy, or at least trying to.

I think it was in the last post, that I was talking about taping my ankles for Taiko. It totally worked! My ankles get tired after about an hour, but other than that it’s awesome. I’m so glad I took the opportunity as there have been a bunch of really good benefits. They’re kind of hard-core about form, posture and how you’re moving your body. I have the world’s worst proprioception, form and posture, it’s been great when the instructor will compliment these things. That my friend; is progress and I’m and going to enjoy it because it doesn’t happen often. It’s also a lot of fun, and very therapeutic. I can bang out my frustrations, and feel like dancing at the same time. I always leave in a great mood, energized and refreshed.

I had a consult to get AFO’s two week ago. Initially, it started like all the rest of my consults. EDS had not been heard of, and I would have to come back for another opinion. I had e-mailed the orthotist with info. on EDS and the link to my blog. I hoped she didn’t think I was a crazy woman, and took some time to learn about it. When I came back, I wasn’t sure what to expect. It soon became clear that she did the research and read my blog. I didn’t have to answer any stupid questions, I was listened to and taken seriously. Needless to say, I was very impressed. I also found out that I could get my braces customized. I thought my options were the fun patterns like the kiddos at work get on theirs. However, I can get pretty much anything I want on there, as long as it in a jpeg. I’ve always wanted tattoos on my ankles and calves but that not happening because I’ll have the AFO’s covering them. Here’s my brilliant idea: I’m going to get the images I want, photo shopped to look like tattoos and put that on the AFO’s. I walked out of that appointment in a great mood, and nothing could ruin my day.

Later that day, I met with a bendy (EDS) friend, and his girlfriend who live about an hour and a half from here. We’ve been talking on facebook for about a year now and finally got our schedules sorted enough to meet. I’m sure we looked classy comparing notes and bendy tricks at the bar. It was so incredible to finally meet someone who is going through the same things, and knows exactly what it life with EDS is like. We both couldn’t believe that we met someone who “got it”, and that we could talk openly without any criticism or judgement.

Hot tubs have also become my best friend. Warm, relaxed muscles + weightlessness=’s the most wonderful pain relief. Yes, I know hot tubs can be gross, but it’s well worth it!

Tips on Living with EDS

- Be proactive and advocate for yourself it really does pay off.

- Don't take "no" for an answer, keep going until you find what works for you.

-Let yourself enjoy the times when things work out, and go well.


"Risk, risk anything. Do the hardest thing on earth for you. Act for yourself, face the truth."

Take that bendy ankles!!!

I've been known to blow through braces. My latest victims are my ankle braces. They've managed to last 9 months and are currently being held together with super-glue.

I'm so fortunate to live in Canada where health-care doesn't cost a million dollars. What's very annoying is waiting for funding. I've got to get AFO's, and no one really knew where to start so it's been a lot of running around trying to figure it out.

I got a consult at the orthopedic clinic to see if I meet physical criteria for funding, then have to wait two weeks to get a prescription from one of my specialists. After that, the orthopedic clinic has to fill out and send the paperwork and I will wait even longer. If I do get the funding, then it means waiting to get molds, and having them made into AFO's. Total wait time: 50 million years. However, it's a step in the right direction and I'll take it!

While I was calling the specialist to book my appointment the receptionist who happens to be a chiropractic student asked me my diagnosis. She was the very first person in the medical field to know exactly what EDS was! I was floored, but in a good way.

After Taiko last week I knew wearing the ankle braces was not an option. We have to either wear bare feet or socks in the studio and my braces slide on the floor. I hate wearing shoes so I was pretty happy about that. I ended up having to take off the braces because I had no traction. That meant my ankles were a stretchy mess and all over the place. This week, I have a new game plan. I resorted back to using Leuko-tape for the stability, and super-glued that stick-mat stuff I was talking about on the bottom of my feet. Hopefully it will provide stability and traction. If it doesn't work, I'll find a different way. Take that bendy ankles!!!

"Do not go where the path may lead, go instead where there is not path and leave a trail."