Saturday, January 29, 2011

The Importance of Fun

Sometimes you just have to do things because you can, and it's fun.

Things like...
- Puddle jumping
- Blowing bubbles
- Art
- Breaking plates for stress relief
- Singing at the top of your lungs
- Having food fights

-Turning finger-painting into face-painting and laughing about it until you cry.

Another item on that list for some, is laughing at the otherwise hard things in life. It's what keeps us sane, and allows us to have our heads where we like them.

I've been playing the avoidance game in terms of emotionally dealing with the whole needing a pump, and how it's going to change things that were not in the game plan. It's starting to catch up to me, and every stupid thing makes me want to cry. I'm not a crier...Most of the time, I choose to laugh. It reminds me to find the positives and roll with the punches.

My bendy friends are constantly coming up with some of the most hilarious and brilliant ideas. We all had a good laugh about one of them and decided to make it happen. This little project will hopefully evolve, but for now check this out....

Pretty bad-ass eh?

I want to use the same idea for something like this:

And just because this has been a popular saying among bendy friends:

One of my "best-est" bendy friends Sama posted this, and I think it's brilliant. Funny enough, we were both working on a post about the importance of fun at the same time without knowing it. It just goes to show what happens when minds think a-like.

"Us Zebras rule. Best gang of weirdo's everrrr!", "EDS Represent!", "L.A. Bitches!" "Fo Shizzle!" (Bendy friends)

Wednesday, January 19, 2011

Embracing life and kicking ass! Or at least trying to...

Wow, the title sounds like some kind of cheesy motivational speaker's infomercial. I thought I'd pass on the most important lessons I've learned on this adventure. I'd like to thank my endorphins, and fluids concoction for this post. I'm feeling particularly good and happy right now so we'll see where this goes.
I also hope this doesn't come off as too preachy, because that would be awful.

The first thing someone needs to know about EDS is that living with it is hard. Very hard. It has this amazing power to take everything away from us, and replace it with infinite hardships. It sucks in so many ways, it is painful in so many ways, and exhausting in every possible way. A lot of times, it's all we can do to make it through the day and night, with hope that tomorrow is a better one.

This is where we have a choice. We can choose to lay-down (not literally) and let all the not so good things in life take us over, or we can choose to stay standing and kick ass! I'm sure you know what I almost always choose. This train of thought wasn't always there for me, and there are still sometimes where I will lay down. Although, not for long. It took me a really long time to go through the depression fun that we all go through with this condition or with whatever else happens in life. Slowly, I started to come out of my huge funk and realize that I had a choice. EDS won't ever stop or get better, and there's nothing anyone can do about it. So, I have to accept it for what it is, and make something of it, or suffer more than I have to until I die.

I know when you're going through hell it's next to impossible to see things as a choice. Really, none of us ever choose to go through all that for fun, it happens to us. When life happens, it sucks and we want it to be over ASAP without making anymore compromises. Sadly, that doesn't happen often either. This is where we frequently start freaking out and getting really anxious. Who wouldn't ? Here's the catch, freaking out and worrying won't get us anywhere. So, chill out.

We have no idea what will happen, but we can choose to grab the anxiety, fear, anger, or whatever it is, and change it into something good. We can change it into something we want.
It takes a lot of work to be patient, and see opportunities when you're in the thick of it, but it's totally worth it. We also need faith, trust and fairy dust (Peter Pan) . Maybe not all of those, but we need to trust ourselves. Don't ever doubt yourself, you know what's right for you and that's what we should all be striving for. Don't give in to what other people think or say about how you're living your's yours. Unless it's destructive, you know what I'm getting at.

Once you have chilled out, having been patient enough to see opportunities present themselves, and maybe, found that something in there that's right for you; then, there's one last choice to make... Are you going to go for it? It's a simple yes/no question, but not so simple when it's something crazy and big. If it feels right to you, then it should be a yes. If it's a no, maybe put it on the back-burner and go back to the drawing board. But, this is very important...don't let it go, just put it away because you might need it later. So, back to the yes part... If you're feeling good about it, and are getting over-whelmed at what could be a potentially huge under-taking, chill out. Break it down into as many little bits as you need, and check things off the list as you go. Remember, keep your eye on the prize!

If your original game plan doesn't work out, make a new one. Who says you've got to stop working at it? It just means you need to find a new way to do it, that's all. Here's where you probably want to punch me in the face. I'd want to punch myself in the face too, if I didn't know that finding a new way has been my driving force in this mess we call life. What you're dealing with may be the hardest thing on earth for you, and it would feel really awful if your new game plan didn't work. There's nothing like finally finding something that could work, getting up the courage and motivation to do it, and it blows up in your face. It's awesome. No, it totally sucks!

But when it comes down to it, there's still simplicity in it all. It didn't work, are you doing to do something about it, or lay down ? You could lay down for a little bit, get the energy to re-group, and start again. Sometimes that's exactly what we need, so don't be afraid to do it.

I should eat Reeces' cups every time I write a post, I'm on a roll...Chocolate and peanut-butter is one of the best combinations ever! The choking is so worth it.

Ahem...back to the post. After you've gotten over your latest plan not working, it's important to not regret, but learn from it and grow. We can't change anything about the past, but we can learn from it, make a new plan and use the whole experience to help us grow. Don't be afraid to get creative, because it's often where we find the thing that works. Corny, I know. When this happens, I like to tell myself that I'm acquiring wisdom. Sometimes it's convincing. Repeat this entire cycle until you find what works for you. It could take anywhere from 1-100 attempts, and along the way you will surprise yourself.

When you've finally found what works for you, you will look back and either laugh, cry or wonder how you made it through. My best advise for this, would be to take a deep breath, be thankful and let your confidence grow because you will undoubtedly go through this all over again, a lot.

The most important thing to remember is to always have fun and find the positives. Fun is very important and so over-looked. Every single one of us has to navigate our way through this world, which sadly is filled with negativity and repression. Really, who doesn't like having fun ? Who said when we grew up, that it all had to stop? Nobody...society tells us that. When we have fun, we're allowed to be ourselves, and find some enjoyment in a time that is really difficult and heaven forbid, it releases endorphins and we get a dose of much needed happy. So, do whatever it is that turns your crank. For me, it can be anything from finger-painting, to a night of recklessness with friends. Singing at the top of your lungs is always a good one too. Who doesn't like doing that?

As for finding the positives, it is vital to your survival. Yes, I said vital. There's nothing worse than feeling like the world has ended and there's nothing left. Did you know, that once you scratch the surface of finding the good things, you will find a lot ? There's always something good in the hard things life throws at us, it's just cleverly disguised as what we call hard work. Choosing to find the good things isn't always easy, but once we've grasped it, we have hope and a renewed confidence that in time, we'll find a way and figure it out. Even the smallest, most silly sounding positive thing counts. These little positives add up and all count for something far greater than any negativity.

Finally, know that once you've found what works for you, you don't need permission to be awesome at it. Be yourself and you will see the awesomeness that's in you just waiting to get out. We all have it in us. Take your choices in life and make them yours. Hold yourself accountable for your decisions knowing that it was you who made the choices. It's going to be you who makes things turn out the way you want when presented with what we'll call opportunities. We can't choose what happens in life, but we can choose to make something of it, and kick ass!

"Happiness is not about what happens to you, but how you choose to respond to what happens. That's why it's called happiness, not happenness. Though, it could always be called hope-ness. You must always leave room for hope that all happened for a good cause."
(How to be Happy Dammit!)

Feeding pumps, the bane of my existence...

I used to say that any kind of tape that held my body together was the bane of my existence, not anymore....It's the Kangaroo pump. At the hospital, we worked it out that I'd need to be hooked up for about 12-14 hours during the day. I managed to find a way to get it down to 9 hours, but it's a huge pain in the butt. I'm trying to get enough money together, so I can get a portable one and be able to live almost normally-ish.

One of the doctors at the hospital fed me the classic line "You'll just have to find a way to adapt your life to it." Yeah, if she only knew that I'm constantly giving things up, and having to adapt to live with a body like this. It's exhausting in every possible way, and this girl never really cries...That day, I was a wreck. I'm pretty sure it was from the combination of being sick for so long, not being able to eat anything they gave me, having really bad cabin fever, crazy hormones and the obvious; being wrapping my head around life with a pump. It's amazing that if you phrase something differently, it won't seem as though the world has ended. I think she could have used "You'll have to find a way to adapt it to your life." Cause' I'll be damned if I'm going to adapt my life to a machine...

When I got home, I realized that not only would I have to give up most of the spontanatiety I had (not that there was much) but I'd have to give up more....It seems rather silly, and petty but I realized that with the pump, I'd have to give up wearing 1 piece dresses. Not a big deal, I know. But it's one more thing that's been taken off the already tiny, still shrinking "Can do" list. I guess the biggest thing that's been knocked off that list has been my almost inability to really eat. I love food, there's no way around it. When you can't chew properly, choke and reflux like it's nobody's business, food stops being your friend. I mostly consume carbs, which is awesome to be able to say,but I miss everything else. Not being a picky eater does have it's disadvantages when you can't eat, and are willing to try anything at least once. Giving things up means loss of control over my body and most things in my life. I know it's unrealistic to be able to control such things, but to have a sense of power over your body is always nice.

I'm trying to use the pump as much as possible but I really hate it. The constant humming and alarms going off isn't healthy for anyone's sanity. So I'm still kicking it old school, and using gravity to get what I need. When it's not enough , I feel a bit symptomatic of the usual dysautonomia, but I can't do the full 9hrs yet. I started this post without having enough fluids in me. I know this because I felt gross and as I've been editing this post, my writing has been atrocious. I was writing in both first and third person, had awful grammar and huge chunks of it were nonsensical. Now that I've been pumping fluids into me, I'm feeling much more human and almost good. Funny how that works.

Today was a small victory of sorts as I was at Awesome GP's, and hooked up to the pump there. I also managed to take it on the subway with me, still hooked up. I only set of the alarm a hundred times, but hopefully I will perfect it, and have it become my new normal. Luckily, it's been fine at work and Monkey thinks it's the greatest thing ever. He was always eager to help put "food" through Jerome when I was using the syringes, so a machine is even more exciting in his eyes. What science minded kid doesn't like buttons, tubing and pumps that connect to a bionic-like intestine ?

Awesome GP brought up a very good point today, he wanted to know what the hospital had as a back-up plan if using the pump became ineffective. There is no plan, so this pump thing better work. I'm also not willing to give anything else up or spend more time in the hospital. One can wish right ?

The one constant in all of this mess has been the incredible support and juju coming from friends. I was lucky enough to have at least two visitors each day, friends bringing me food that I wanted to eat and things to keep me occupied & happy. And, I had a friend offer to help me find and make tube/pump friendly dresses. What more could a girl need in life? I am very thankful.

Before I forget, I got accepted to school and will be starting shortly :)
That news came while I was in the hospital, it was nice to have something to work towards. As I have to come to realize the universe has my back; anytime one door had closed and something had to be given up, an even better thing came along. It's not ever what I had envisioned, but there has always been a workable or brilliant solution with it all. These things just don't always appear, they are a result of hard work and choosing to find a way. Plan "C" is in full force, I'm taking a huge leap of faith, but am hell bent on making it happen my way. That's plan "C" for work and schooling. I'm on plan "E" for staying out of the hospital....Just like I said, not what I had ever envisioned, but sometimes just as awesome. More to come on that later.

When Monkey came to visit, my sanity was restored for a while. Nothin' like drawing roosters with jet-packs and green mo-hawks, sword fights with pool-noodles and testing the mechanics of the bed 50 million times to get some fun in an otherwise yucky situation. Oh, and another 50 million questions about how an IV pump works.

This is how you bling-up an IV pump with juju. Notice the amount of fluids I was getting, 100ml/hr...that was before I was getting enough, and at my sickest...So glad they listened and gave me more.

When you're bored out of your tree, and can't do much of anything..."Dear: Jerome, WTF is going on with you?! Smarten up!"

That's right, everyone had to read this before they really even spoke to me. Then they got a lollipop after they complied :) Not only was there more EDS awareness out there, I created lollipop addicts and am proud of it.

It was so nice to be able to stick my nose in my favourite flowers, from a fantastic person, take a big-giant sniff and forget I was in a hospital for a while. The acu-ball helps with so many different kinds of pain. The Buddha book helped me put my head back where I like it when things got crazy.

1.5 weeks later, still lookin' like a junkie. I was pretty dehydrated when I was admitted. It took them 6 attempts to find a suitable vein that wasn't on a joint to get an IV in. They were awesome about it, and wouldn't poke me more than two times before getting someone else to try.

My latest invention in the fight with dysautonomia. That night, I had enough of dealing with pumps and refused to have it going in my little sanctuary. I wanted to read in my bed, without any noise coming from medical equipment. So I made use of the stuff that could no longer be used for their intended purpose, and got to read in peace and get hydrated at the same time.

"If you're going through hell, keep going." (Winston Churchill)

Monday, January 17, 2011

A kangaroo and plan "E" to stay out of the hospital

So I'm home from Chateau Sinai, after being discharged yesterday afternoon. 6 days was more than enough for this girl.
We have a new game plan, and I'm still working on wrapping my head around it.
Jerome, or rather my jejunum can't handle a lot of anything at one time, so I'm the lucky winner of a pump that needs to be attached to me for 9hrs-ish/day.

This is how it's going to happen:
Fluids concoction, approx. 400-500mls/hour to cover 4000ml/4L. Consisting of: sea-salt, magnesium (tricks of the trade) and just plain tap water.
Jerome will get fed 60mls of the Vega mix very slowly through a syringe after every 1L of fluids mix. ( Vega,60ml/1L fluid concoction x's 3-4)
I've "lucked out" in that a lot of people with J tubes are on a pump for up to 24hrs.
The Vega mix is too gritty to go through the pump, and I refuse to use any of those nasty-chemical filled tube feeds, so it's through a syringe.

I don't want it hooked up at night because I move so much, pull on tubes and really don't want to deal with having to re-fill the bags, needing to pee like crazy and beeping alarms in the middle of the night. I need as much sleep as I can get, and good sleep is vital.

By doing it this way, I shouldn't have nearly as intense or frequent dysautonomia symptoms and will continually be hydrated with everything good. This also has huge potential to make recovery from hang-overs much easier.

It's essentially the same amount of stuff I was getting before, but now through a pump. I'm still eating about 1-2 meals in a day and drinking about 2L of water, or at least trying to.

I enlisted the help of some bendy friends, and found an awesome portable pump, and got a hilarious demonstration on how to use it,I'll hopefully be getting it soon. Dear:Bendy friends and Skype at stupid o'clock in the morning, I love you. Nobody at the hospital or home-care believed me that portable pumps existed until I busted out the info. the next morning. Buhahahahaha.

It's a Kangaroo pump, the Joey....

It's an expensive piece of machine, and I'd rather spend the money on something more fun, but that's the way it is. For now, as part of my discharge plan, they set up home-care to make sure everything's working properly and providing the same pump/supplies that were in the hospital. I got it today, and have used it for 1L. We are not friends yet. I'm trying to get as much as I can through with the gravity feeds and drinking. I should really be hooked up more, but I need a break from the beeping and humming of machines. My little one will be much quieter, easier to use and far less of a pain the ass.

Having to go this route totally sucks, and I hate it, but there's not choice other than to kick ass ass at it. It's a good thing Jerome can still have vodka :)

Wednesday, January 12, 2011

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)

Sunday, January 9, 2011

When you're sick and can't do much of anything, this is what ensues

That's where things with Jerome are standing right now. We are not friends. The same goes for dysautonomia, it's been a blast around here.

I'm still tachycardic and it hasn't really gone away at all. My HR has been sitting around 88-92 since Friday. If I'm really lucky it will go back down to my usual 65 for a bit. Doing anything will make it spike though, standing still in the shower got me up to 132. After sitting for about 10 min it went down to 120. I put 500mls of fluids concoction through J and my HR went down some more to the high 80's. Thank you sea-salt and magnesium. Then I started feeling pukey and refluxing like a mofo. By then it was 2pm and I hadn't had anything in me for 13 hrs. I knew I'd feel gross regardless of what I did, so Jerome had some Vega mix and 500mls of water. I managed to keep it down but there was a lot of heaving and reflux up to my ears and out of my nose. Like you wanted to know eh?

3 hrs later and I'm still refluxing and feeling pukey. I might try to eat in a few hours and see what happens. Last night it resulted in a lot of pain and had me feeling more ass-tastic. It also took forever to get anything down because of good ole' dysphagia which gets worse with dysautonomia. I figure if I can get 1.5L of fluids, Vega mix and some food in every 24hrs then it's not too horrible. Although I should be trying for more. Oh yeah, while drinking my little sips of water as per. ER doctor's orders, I managed to choke on it and aspirate. I'm hoping it won't turn into pneumonia because that stuff really knocks me out.

This weekend has been pretty uneventful in terms of actually doing anything like a normal human. However, I've been able to finger-paint which makes me happy. I hope you're ready for an onslaught of photos. They're all "art" and finger-paintings. Hahaha I have way better things to do with my time, but can't. Thanks EDS.

My interpretation of an collagen cell affected by EDS.

Monkey and I did this a while ago, it lives on my back-door.

I started this one last night, laying while laying on the floor. I guess I was feeling ass-tastic enough for a nap, because I fell asleep for about 2hrs, while still on the floor with paint on my hands. The red is suppose to be orange, it looks kinda morbid don't you think?

Here's to hoping tomorrow is going to be a better day.

-"When Jerome starts behaving himself, we'll have to have some drinks over Skype or something. It will be awesome. You can drink with your new neck brace on and I can do vodka shots through my tube."
-"YOU ARE ON!!!, We need to set a name it, I'll be there. Shots for you, and wine for me. Wait, I'll do a shot!"

(Facebook bendy friend Jennifer)

Friday, January 7, 2011

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)

Tuesday, January 4, 2011

Photos of this, that, and everything else EDS related

Happy New Year!!

I had been reflecting on the insanity that 2010 brought me. It was a wild ride, and far from boring.It was packed with some really difficult realities that had to be faced and in all of that mess, there were countless little miracles and incredible learning experiences. 2010 made me realize the universe has my back, and that was the greatest feeling ever.

Jerome is still playing the same games. Hopefully now that all the doctors offices are open, we can get down to the bottom of this stuff. A bunch of bendy friends gave me their two cents on the whole thing. It's nice to know that I haven't gone crazy, and that yes, with EDS surgeries fail. The thought of doing another couple procedures doesn't bother me, either does the pain and recovery. What does scare the crap out of me, is having to stay at the hospital and put trust in a system that made some dangerous, completely avoidable mistakes the first time. This girl already has enough trust/trauma issues from dealing with hospitals. So, I'll do what I feel is right for me, when it feels right for me. Take that negativity!

My application for school has been submitted. Now I'm in the process of filling out scholarship and funding applications like a mad-woman. Watch out school, here I come!!

This post is going to contain a lot of pictures, hope you're ready. Maybe some of the things I use to help me, will give you ideas on how to navigate life being bendy.

Since the Leuko-tape tears at my skin too much it's great for brace repair. Yoga mats make for great cushioning and traction on ankle braces when you don't want to wear shoes. Velcro and Gorilla glue are my best friends.

Living with EDS and a tube as spontaneously as possible, involves being a bit of a nomad. It all lives in zip-lock bag in my backpack. That way, I can "eat" and take care of J wherever I am.

What Jerome eats, and what keeps me mostly out of the hospital. It's so nice to push it through a tube and avoid having to gag while getting it down. The stuff works brilliantly, and is wonderful but tastes horrible.

EDS + GJ-tube can be high maintenance, with very slow healing... 2 mts later, and J is still not healed. Whoever came up with the idea of alcohol in a spray bottle is my hero. Calendula works well on minor rashes but the best thing ever is the Plaintain Salve. It takes care of wounds, bad rashes and helps take the adhesive off skin.Tape...the bane of my existence. Transpore works well if you really want something to stick but it leaves epic rashes. Paper-tape (Micropore) is much better and easier on the skin. The only down-fall is that it doesn't stick for long and sometimes Jerome runs away.

Some of the wonderful stuff that brings pain relief. I don't use the Deep-cold, heat patches or Bio-freeze as much but I like to have it around. The Chinese herbs have to be my favourite things though, along with the Acu-Ball.

When your hands are bendable, it's hard to hold on to anything. I mostly use a normal pen with a grippy thing for writing, but sometimes use the PenAgain. When my hands don't feel like holding on to my utensils I have a grippy that makes it a lot easier. The vegetable peeler is amazing. You put the ring bit on your finger and the blade in your palm, no holding necessary. When I can't open things, using stick-mat is key. I can't imagine life now without an indestructible water bottle with a spill-guard and a lid that opens easily.

Multi-tasking at it's best. Didgeridooing and drinking at the same time, while in the world's most comfortable bed. It's totally possible.

Dear: Jerome, you can have all the nasty fluids concoction you want. Drink up!!

Fluids concoction in the Kangaroo pump set. Consists of Calcium, Magnesium, sea salt and water. The sea salt maintains BP, Magnesium helps with pain, muscle tightness, keeping HR and arrythmias under control. Calcium, well because we need it more than the average person.

Then there's the times when bendy friends get together. We're not just a bunch of pretty faces...

Some of the Toronto and area bendy posse.

Funny enough, we drank all the other alcohol except for the zebra wine....we'll save that for next time. Maybe Jerome would like it.

Then we went swimming and hot-tubbing for 2.5 glorious hours. Pain relief at it's best.

And just hung-out being all bendable...

And played a game of "let's do bendy tricks!"

Which consisted of this...

And's not impossible to lick your elbow.

More wonderful carelessness, you just gotta sometimes. Please excuse the cave-man hair.

You can't see it but there were at least two hyper-extended knees and really messy hips.

If only this picture showed the epic-ness of that rash. The rash on the left side of the Tegaderm is from where I tape Jerome. It's not healed enough for me to use the other side of my stomach so I have to stick with moving it around on that one side. I do love Tegaderm though, it's so much better than using Leuko-tape or duct tape with a sandwich bag to cover J up. Coban wrap and plantain salve were my best friends for the next two days.

Holly, the brains behind the newest EDS research, her boyfriend Ted is bendy.

"Creativity comes from trust. Trust your instincts."
(Rita Mae Brown)

And the one that's keeping me going this week:

"Divide each difficulty into as many parts as is feasible and necessary to resolve it"
(Rene Descartes)