GJ-tube drama, and a little monkey

"Dear: Jerome, I dislike your drama and have a brilliant idea to sort of replace you, and the drama. It's big and scary right now, but a thought none the less" -My facebook status this evening.

I guess it's no surprise that there is Jerome/EDS drama, so here it goes.

It's been 2mts and few days post-op and not too much has changed. Jerome is still healing, and the other day was bleeding a bit from the stoma, probably as a result of over-doing it. I still get reflux and feel sick anytime I put anything at all through J. If I have anything at all before I put something through (even two sips of juice) I will puke. The last two days have consisted of puking when there is nothing in my stomach and I'm feeding J. Whatever I put in, comes out and it's getting old.

This whole feeling sick when I ingest the food or liquids in the morning, has been going on since childhood. It's one of the biggest reasons why I hate breakfast. I'd also rather be sleeping instead.My sister has been puking first thing in her morning for years now. Maybe it's my turn ?

Here's what crossed my mind on the subway today. I need input.In theory, if I were to get a Nissen fundoplication it would stop the reflux and the puking. If I got just a plain G-tube (which is possible since I have J already, just a shorter tube) with a Mic-key button, it would be far less maintenance, I could put pureed foods in it, and I wouldn't have a tube hanging from my stomach. If I needed to puke for some reason, I'd have the G-tube. It would basically cut down all the drama, which would be very nice. Keep in mind this is just a thought, and I'm all about quality of life. Waddaya think?

Other than that, everything is good-ish.
School paperwork is coming along, and......Skating is still on the "can do" list :) The climbing gym trips with Monkey had to be replaced, so it's the beach in the summer and skating in the winter. We're more than okay with it.

Tomorrow is officially my last day as an IBI therapist. Thanks EDS.
There are a lot of mixed feelings about it, but right now I'm choosing to be greatful for all the priceless things I've learned and can take with me.

Here's a little video I made of mine and Monkey's day today...

Think about this today...

I came across this quote this morning, and found it to be quite fitting and rather empowering. I hope you get something out of this too, and continue to make your way through the crazy journey that is life with courage, resiliency and drive to do whatever you want.

"Whilst in the pursuit of a grand,wonderful dream, should you all of a sudden round a bend and see before you an enormous uncharted mountain with towering cliffs, jagged rocks and seeming impenetrable walls, just consider it a sign that your dream is considerably more worthwhile than you had previously imagined, and that you're exactly where you're suppose to be."

Write it down and keep it close.
Take that negativity!!!

Fluids, art & being a mutant/clone

I hope you all have been able to enjoy the holidays, and doing whatever makes you feel good.

In my case, there was another ER visit last week for fluids because I'm awesome.I managed to stay away from the hospital for three weeks this time. I had been feeling craptastic with the usual dysautonomia stuff going on, although not crashing nearly as bad. Thank you Jerome.

I knew I wouldn't be able to ride it out, and I had a few options.

a) Try to avoid the hospital here, and end up in the ER at the shitty Ajax hospital over Christmas, where they don't know me or have anything on file

b) Go during the day, and loose a day's pay

c) Go, when it wasn't going to be busy,where they know me and be able to work the following day.

I chose option C.
The triage nurse was initially a bitchy about the whole thing. She didn't want to listen to me, or add any of the info I brought to my chart because apparently, "they wouldn't know what EDS or dysautonomia were and wouldn't bother reading it." What a bunch of crap. After I insisted, got a little louder, and asked for a new nurse,one of the other nurses took notice and remembered me...My info was added to the chart, and bitchy nurse got put in her place :)

When will people learn not to mess with this girl?

Funny enough, all the ER nurses read my info and let me call the shots. So, I ended up getting the usual 1.5L of fluids and 50mg of Gravol.My blood-work came back normal, waddaya know. They didn't bother with any other tests.

I'm convinced the crazy dysautonomia has something to do with crazy hormones, as it happens every single time. One of my other bendy friends has been getting treatments for funky adrenal/hormonal stuff and since doing so, hasn't had any symptoms of EDS or dysautonomia. She's totally convinced it's all adrenal/hormonal related...When I win the lottery, I'll give it a shot too.

Jerome is finally healed enough for some art.He makes for a really good canvas.I have a ton of ideas but will always welcome requests and suggestions. The possibilities are endless.
Pooh is bendy too! His leg is hyper-extended, his hip and arm that's holding the balloon are dislocated.

Jerome and I were getting Christmas cards, so I thought it would only be appropriate for J to wish everyone a Happy X-mas. This Santa is bad-ass, he's zip-lining!

When I got Jerome put in, someone suggested I somehow make it into a elephant...

Now for the genetic mutant & clone segment of this post. My sister and I are monozygotic (identical) but there are some differences. For one, I don't think we look a-like but apparently we do...We have a lot of the same EDS issues and similarities but she doesn't have dysautonomia, and her range of motion isn't as crazy as mine. Those differences have been attributed to lifestyle differences. Here are some pictures of our "sameness"...
We both have a hard time using our hands, rubbery fingers are pretty useless.

Our hands are turned a full 360 degrees along with some elbow hyper-extension thrown in.


We used to think everyone could turn their legs like that...those crazy normals.


Standing with flat-feet is so over-rated.

Me on the left, my other half on the right. Don't even try to tell me we look alike...Because we don't. End of story.

Before I forget, I had a little Christmas miracle happen :) One of my really good friends has been hearing about my plan "C" for a while now, knows how bad I want it, and thinks it would be perfect for me. I got a pep-talk, and was given a few things to get the ball really rolling the way I want. Moving in with my parents will hopefully be avoided.

And.......skating is still on the "can do" list!!!! I took Monkey in hopes that it would be something we could still do. Last year I had to give up climbing, so we couldn't do that anymore and we were both kind of crushed over it. I tried skating last year and it was a success for both of us. I could still do it, and he got to really work on his balance, co-ordination and gain some confidence. We slapped on some skates and hit the ice last week, without injuries. I use hockey skates, they support my ankles like AFO's and it's a low-impact activity. I was nervous about my really unstable hips, but they were fine. Needless to say, we'll be going again until the rink closes in the spring.

"Here comes the sun, do,do,do,do...I say, it's alright."
(Beatles)

You just gotta, it's plan "C" or bust!

Do you ever have an incredible opportunity that only comes around once, where you want it so bad, but it scares the crap out of you?

I'm in that boat right now. I've got the most amazing and brilliant opportunity to cease, or it's move home with my parents in suburban hell. I want to make this happen, and it's very possible to make it work with EDS. I've essentially got it all figured out, but can't get myself to actually make it happen. I feel stuck and essentially paralyzed by fear.I used to think I was invisible from that part of EDS, stupid me. Instead of doing what I need to do, I'm writing a blog post at 2am.

I'm scared that I'll get everything together, it will all fall into place, then EDS will turn uglier and it won't be able to happen. That's exactly what happened when I applied to a specialized program in England. I got accepted during my interview, and scored a huge scholarship. I had everything I needed to go, with the most important things being passion and drive. EDS got worse, and there was no way I'd physically be able to do the program. I had to give it up. Some people think I just walked away from it, and blamed it on EDS. This was just after I officially got diagnosed and wasn't nearly as bad, but I was quickly falling apart. Instinct told me that EDS wasn't going to stabilize anytime soon, and would get worse. I don't blame or resent anyone for thinking how they did, but when I tell someone about my newest opportunity and they bring up how I chickened out of England....that's not fun. I sure as hell didn't back out because I wanted to stay here, and it really wasn't a choice. I'm terrified of it happening again, I'm tired of having my little world that I worked so hard to create, come crashing down. The irrational and pessimistic part of me is saying "don't even bother", "it's going to happen again", "EDS is bigger than you"...Isn't negative self-talk fantastic?

Apparently I'm sleepwalking again. My room-mate said that instead of just walking around the apartment doing random stupid things, I've managed to leave the house. I wake up with everything exactly where I had left it before I went to sleep , including myself in my bed. Apparently, I managed to throw on a pair of shoes, somehow remembered my keys, walk down a flight of steep stairs and make my way around outside. Now, she didn't actually see me do it, but she heard clomping shoes, she heard me talking to myself, the door open and me go down the stairs. She thought I was just taking another trip to the ER. So, I have absolutely no idea what I did, or where I was. Holy scary Batman! I'm convinced it was house trolls.

I could very well be sleep-walking again. I thought that because I was doing really well in the sleep department (well the sleepwalking and anxiety part) I stopped taking one of my supplements that helped with it. It's expensive and it would have been one less thing I'd have to keep track of. I tend to sleep-walk as a grief-loss response. I'll be unemployed in about two weeks, and leaving one of the greatest jobs on the planet. One of my bendy friends died and I'm coming to terms with the very real possibility of moving home. I just love it when my worst nightmares come true, thanks EDS. I've gotta go back on those supplements but I'm still blaming it on the house trolls.

So on to more positive things....
My plan for the Kangaroo pump has worked out well. *knock on wood*. I've been putting 500mls of my concoction through when I wake up and go to bed, and have been feeling great. I think it's helping prevent crashes during the night, and it definitely kick-starts things in the morning. I throw in my Vega mix through a syringe, and I'm good to go. If I do that, then I usually have a close to normal appetite and can eat throughout the day. If I don't do the mix or Vega, then I'm back to not wanting anything to do with food or liquids. I still choke and aspirate on everything, but I love food too much to completely give it up, and am nowhere near ready.I'm eating peanut butter on celery right now, mmmmmmmmmmmm.

Yesterday, was spent with the Toronto and area bendy posse. It's always nice being in the presence of people who truly get it, where you can ask anything and no one will get freaked out, and where you're "normal". We went hot-tubbing for two glorious hours. Well the three of us who are POTSy, had to switch between the hot-tub and pool quite often and drink a ton of cold water but it was awesome. There's nothing like floating, and having ALL of your joints stay where they belong, not to mention the most wonderful pain relief. Gravity is over-rated. The Tegaderm patches were brilliant, Jerome stayed happy and dry. The epic tape rash wasn't so wonderful, but well worth it.

I know there are a lot of us who are just plain stuck. It sucks, and we all want to move forward. I was introduced to this book this past summer, life was pretty awful, and it really helped me put my head back where I like it. If you see the world like I do, (in terms of beliefs) the book is brilliant, and just might be the thing that motivates you to get back in the game. It's called The Four Agreements, http://www.miguelruiz.com/index.php?p=Books., and yes, I will be reading it before I go to bed and reminding myself what I need to do.

This is where I need to take my own advise...
A lot of people ask how I manage to keep it together and work my way through life with such a positive attitude. Just so you know, it's not easy and not always positive. I just had a nice little melt-down tonight. But, I am living with EDS my way. Not anyone else's way. This is my body, and my life. I've had to fight hard to get to where I am now, and not everything has worked out the way I planned, but I'm still doing it my way. We should all do what works for us, and do it our way. If it feels right, do it. If you're not sure about something, take your time and think about it. If it still doesn't quite feel right, then don't do it. That also goes with dealing with stupid doctors who think they're god. Don't take any crap, you're allowed to fight back and you're allowed to get rid of them if they're not helping. No one has consent to make you inferior, and it's always nice to serve someone like that a piece of humble pie. I guess the most important part, is to be completely honest with yourself, and trust yourself. Have confidence that you know what is right for you....because you do.

P.S. Jerome says "hi" and that he likes vodka.

Plan "D" to stay out of the ER and other babble

We all know how EDS works, with the only constant being change.
Today, I took it upon myself to change it up on EDS, which will hopefully keep me out of the ER for longer periods of time.

My Facebook status consisted of this:
3 syringes 60cc $8.25
2 rolls of paper-tape $4.50
2 rolls of Coban wrap $9.90
1 Kangaroo pump set $16.95
5 Tegaderm patches $33.95
Staying out of the ER and kicking EDS's ass: Priceless.

I have to say that the Kangaroo via gravity for fluids is amazing. Part of the problem before, was that if my hands were being horrible, using syringes to pump enough into Jerome wasn't ideal. The Kangaroo does it all for me. I made my own mix of electrolyte minerals, sea salt and just tap water. I threw it in the Kangaroo and let gravity do the work. I got in 1L of my concoction in 15 minutes through Jerome. I had to pee like it was nobody's business after, but that happens when I make an ER trip anyway. I can hang the bag from pretty much anywhere and the tubing is long enough that I can walk around my room or lay in bed. This means, I'll be able to bring it with me when I go camping and hang it from a tree. The possibilities are endless.


Since Jerome is taking his sweet time healing, I still have a stoma. I got the Tegaderm patches because they're water-proof and will protect J from all the mingin' bacteria when I go hot-tubbing. I will gladly take epic-tape rash if I means the amazing pain relief I get from floating in hot water, there's nothing like it. The Coban wrap was surprisingly cheap but the largest they had was 3.5", so we'll see how it works. I'm planning on using it after the Tegaderm and giving my skin a chance to heal. I'm not holding my breath, but who knows it could be fantastic.
For those of you who are curious what Jerome eats, it consists of two things. I use a vegan whole food formula (meal enhancer drink). One serving contains all of the recommended daily vitamins and then some; with the Omega's, protein and everything good. It's called Vega, and I love it. It also does not contain a lot of the common allergens, sugars or chemical grossness that are found in other g-tube friendly formulas. http://myvega.com/products/whole-food-health-optimizer/features-benefits
The other stuff Jerome eats is a greens mix. That's what I started out with before I got J, to ensure I got all my vitamins and some carbs in when eating wasn't an option. I will say that the berry flavour used to enhance it, probably makes it taste more disgusting. Even the smell of it makes me gag, but that could be attributed to being sick while I was trying to choke it down and stay out of the hospital. Either way, it's vitamins and it comes in a big container like the Vega, or individual packages (which I use) so I can have access to "food" anytime, anywhere. The only down-fall, is that it doesn't do much for reducing my carbon foot print.


A lot of people have been telling me I'm looking better, and have my colour back. I guess I'm doing something right. I still get a good laugh when people find out that I've got Jerome and I'm sick with two things that don't have a treatment or cure. Then, I get the classic line we have all heard a million times,"But you don't look sick". That's when I throw in a "Surprise!" because there's nothing else one can really say.

As I was digging myself out of my latest epic funk ,and just started being interested in life again EDS had other plans for more than one of us. Last week one of our bendy friends Maria died. Thanks EDS. I never thought in a million years, that I'd be part of a club that included having to say goodbye to some really amazing, beautiful, people living as best they could; despite this monster. Every time a bendy friend looses their life to this crap, it's a slap in the face and a reminder that we need to value every moment we have. Even if diagnostically, we're not meant to leave this earth early.



Pretty awesome toque eh? Yes, I just said the words toque and eh in the same sentence,stereotypically Canadian. My bendy friend Christie gave it to me when I got Jerome put in. We put it on my IV pole, my fluids and meds looked pretty bad-ass!

So to all my bendy friends: Fight like hell, and then fight some more. Not that we really have a choice, but we can choose to make it work for us. See something for what it could be, try your damndest to make it happen, and turn it into something that is.

Digging out...

So I'm slowly working my way out of this epic funk. It's been a while since I've felt that helpless, scared shit-less and hopeless. Wasn't that classy?

It took a few days to get enough motivation, to even think about attempting another start at life. It doesn't change the fact that I'm still really tired and just sick of it. Before I was ready to get back up and keep moving, I needed to process and just be. This happy-go-lucky girl needed to put away the positive attitude, and face a lot of hard, scary shit. There is something good to be said about sitting alone on a beach in the dark, having a good cry and a talk with the universe. Maybe because I like to do that stuff alone, or maybe it's because when I'm near the water, I feel whole. Either way, it was where I needed to be at the moment, and it felt good.

None of it means my situation has changed, or suddenly become better, but it means that I took a long hard look at EDS, and decided that I was still going to kick it's ass. Not that there's really a choice.

A huge part of being able to start digging out has been the incredible support of friends. These are the people who accept the whole package that is me, even when I'm not all smiles with sprinkles and a cherry on top. They offer to come visit, go out for a bite, and do things that make me happy. They find ways to keep me engaged in the world, and let me be alone when I need it. There's always a listening ear along with a laugh and encouragement to keep moving forward. Really, what else do we need in life?

I think I may have found another game plan to avoid the ER for a while. Since I can't seem to handle anything by mouth before I put something through Jerome without puking, and always feel gross waking up, I'm pretty sure it's a dysautonomia thing. I'm going to see if getting 500mls of some home made natural electrolyte/saline type concoction on a gravity t feed will work,.Hopefully if I do it first thing when I get up or am feeling extra gross, it will yield some results. I guess the bonus is that I can still lay down and just chill out instead of trying to fight with feeding J, because sitting makes things worse. Not to mention, if I feel like I'm going to pass out, I'm already laying down.

I found this awesome vegetable peeler over the weekend and love it! My fingers don't dislocate!!
http://www.chefn.com/Product.aspx?id=51

In the midst of this funk, I realized that even though things are crappy I'm still really lucky. I may not be one of the "lucky ones" who we all had hope of being in the beginning of our walk with EDS, but I think I fall into a different "lucky ones" category. Sure, I feel like ass every single day, I need a braces, a wheelchair and a million other things to function. However,I have avoided a lot, and have been able to live a pretty damn good life. Aside from getting Jerome and fluids, I haven't needed any other medical intervention. None of my organs have prolapsed, I haven't needed any othro. or neuro. surgery, or crazy meds to be able to function. Everything else has been tests, consults and fighting so I can do it my way. I am lucky because I have found awesome people who always try to find ways to make life work with natural and Chinese medicine, who have never given up when everyone else has. I'm still scared shitless at what could happen and what will most likely happen, but sitting and waiting around for it to happen is so unproductive. So, I say eff it. I'm going to do it my way because you only live once, and there's only one way to find out if something will work. If plan "Z" doesn't work there's still room to come up with something else.

I hope for any of you that may be in a funk; that you can face the scary shit, decide that you're going to kick it's ass and can start moving forward with a new plan. Remember to do it in your own time, and in your own way, because that's really the only way.

"When I find myself fading, I close my eyes and realize my friends are my energy."

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)