Thursday, December 30, 2010

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...

Wednesday, December 29, 2010

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!!!

Sunday, December 26, 2010

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."

Sunday, December 19, 2010

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,, 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.

Monday, December 13, 2010

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.
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.

Wednesday, December 8, 2010

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!!

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."

Friday, December 3, 2010

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"

Monday, November 29, 2010

Three Good Things 2nd edition

So, there are a lot of people who check this blog out...I know this because I have super-powers. Or, it could be the stats button I just found. I need reader participation for this post.

In the past week, I've listened to a lot of stupid things people say when they see this "disabled girl". The "I don't do pity" and "Thank you for your ignorance" lines were used quite a bit. Heaven forbid I get treated normally...

I have decided that, this is going to be another edition of Three Good Things...

1) I can finally play my didgeridoo again. It doesn't hurt J anymore, I can get some really good breathing exercise in, and completely chill out.

2) Laying on my stomach is once again possible (for about 30 min). It makes my hips, back and SI joint very happy.

3) Jerome can do vodka shots. You read it right.... It burns for a minute, but then it hits and you get drunk straight away. Don't tell me that if you had a tube, you wouldn't want to try it....

P.S. I have managed to stay out of the ER (dysautonomia) for over a month!! Greens mix, salt water and acupressure seem to be key.

Now it's your turn to add your Three Good Things (in the comments section).It doesn't matter what they are, because positive anything is better than negative nothing. I know you're pressure.

Tuesday, November 23, 2010

Because it's important....

Since this is my blog, I can do what I want with it :)
This isn't exactly EDS related, but I think even more important.
Please take two minutes to check it out, and pass it on.

Saturday, November 20, 2010

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!!!"


Saturday, November 13, 2010

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.

Thursday, November 4, 2010

It's okay to be okay

This post has come from having old wounds opened, and new ones added to the collection. My stay at the hospital was a nightmare, and yes I will eventually be opening up a can of proverbial whoop-ass. For now, in hopes of being able to get this off my chest and maybe some sleep, I will present you with this.

It seems as though Western medicine has started to catch on to the idea of treating the whole person, and trying to include mental and emotional health into their scope of practice. I think it's a huge step in the right direction, and hopefully it will help change the way patients are treated.

While it is no secret that I have gone the route of natural medicine, and think it's the greatest thing I have done for myself, it may not be so known as to why I made the choice. 13 years ago when I started on the long road of EDS, it began with a dislocating shoulder and all over joint pain. I was referred to two surgeons, put on pain medications and told that it was no big deal. Over the years as more joints started to dislocate, pain become less manageable I ended up seeing more and more doctors. I was told that there was nothing that could be done, that I was making it all up, looking for attention, doing it to myself, blowing it out of proportion, and that I just had to learn to live with it. Nobody could explain why all the treatments I tried were failing, other than that I was sabotaging them and wasting people's time. Awesome, just what I needed.

This lead to my eventual miss-trust in pretty much everyone who practiced Western medicine, and depression. I was thrown on a few different low-grade anti-depressants and I got some anxiety meds for emergencies. The girl who was once happy-go-lucky had turned into a ghost walking around in a shell. If I could use one word to describe that time in life, it would be: numb. As a defense mechanism, I learned to turn off every emotion and not attach myself to anything. Doing that would mean I wouldn't loose anything. If I didn't feel joy, then I wouldn't need to feel sorrow. If I didn't feel optimistic, then I wouldn't feel let down either. I thought for me, that it worked. I could walk through life in a fog, not feeling anything, and eventually things would get sorted. I just needed to wait it out. I was so wrong.

It took a while, and some very honest friends telling me that no, I wasn't okay and I to make some changes. The first thing I did was find a naturalpath. My consult was 1.5 hours, we covered EVERYTHING and the thought of that baffled me. Why hadn't this been done long ago, when the whole EDS mess started? And, why was she the first person who really listened to me? I left her office feeling optimistic, and far less numb. That day, I decided to scrap Western medicine and put a bit of faith into something else. Over the years, holistic medicine has also helped me learn to think differently, which lead me to living differently.

So we'll go back a little bit to where I started. The reason I'm bringing this up, is that all of the doctors and most of the nursing staff at the hospital asked me about how I manage to keep positive. How could I be excited to get a gj-tube put in? Surely, it's not possible for me to be okay with all that's happened. Haha, if they only knew some of it. I had a neurologist consult this week to get the suspected dysautonomia sorted. He kept asking about what life was like before EDS got bad, and how I've handled it over the years. This meant that wounds that just healed, got opened. My psychologist thinks that I have trauma issues, as a result of dealing with all the negativity thrown my way from doctors over the years, and needing to fight for everything.

I won't lie, loosing the ability to do everything you live for is hard. Going to sleep and waking up in pain everyday is hard. Giving up some amazing opportunities, and even girls nights is hard. Feeling like you've been left with nothing is hard. Gaining things that will make life "easier" is hard. I don't think anyone as a child envisioned braces, wheel-chairs, endless doctors appointments and extra tubes sticking out of their bodies when they grew up. Yet, here we are, with varying degrees of disability and regression; with lives that somehow need living. I will be the first to say that going through the grief process, with a condition like this never really ends. It comes in waves, depending on what life throws at us. In the last year I've managed to get over the anger part, and am pretty much through the sadness bit I think. I have my days when I'm so tired of fighting all the time, just to be able to live. I pay insane amounts of money for treatments (which I love and think are totally worth it) to be able to work, have less pain, and possibly slow things down. Those are the days where I stop caring about everything and completely shut down. I isolate myself and just process, it's what I need to do.

Being okay takes a lot of work in being really creative, resourceful, brave,stubborn,patient and having confidence that all will get figured it out. I find ways to make whatever has been thrown at me, work. I've learned not to have any expectations, but to go along for the ride and enjoy it as much as possible. It can mean jumping in with both feet, or taking a step back to think about if something feels right. That's the other thing that has really helped. If it doesn't feel right, then I won't do it but, I will fight for what feels right for me and so should everyone else. It means slowing down, and not taking anything for granted. As a rule for myself, I have to find at least three good things about my day before I go to sleep. There are always good things in each day, no matter how bad the day was. For me, it also means having faith that the universe has my back and that I'll always somehow make it through to the other side even if I have no clue what's in store. Who does anyway?

I have lost pretty much everything, but have gained in so many other ways, that I wouldn't trade my experiences for the world. Those are the things that help shape and push us to go further than we ever could imagine. Sure, the journey is hard and at times just plain horrible, but we can always look back with pride at what we overcame and accomplished. For those of us who are young and were once ready to take on the world, being thrown into the land of EDS has probably knocked our entire lives off kilter. We were forced to grow up and mature quickly. A lot of us facing, or coming to terms with our own mortality. When that happens, everything seems to take on a new definition, with a deeper meaning. We measure life in the little things that make life wonderful, rather than what is quantifiable.

I came to realize, that these are the same lessons that takes almost everyone a lifetime to learn. In a way, I'm glad to have learned these things now, so I can live life to the fullest and not sweat the small stuff. It has essentially saved me a lot of unnecessary pain, wasted time and sweating the over petty things.

Living with something like we do, is far from the norm of most people. When they learn about how we live, with the insane amount of complexities; it's not how they picture living life. It's not what they want for life, and it may just be a bit scary. Think of how it was for us being freshly diagnosed or just starting on this road. I'm sure I wasn't the only one scared shit-less. If someone hasn't even been able to experience the symptoms (although I'm jealous), having to see what EDS can do isn't pretty. Knowing there's nothing that can be done to make this beast of a condition go away, and not having a clue how to help is probably intimidating, even if you're not living it. Maybe the best thing they can think of to help us is to see if we're okay, because it is something, and it's something they can do for us, when everything else is beyond anyone's control. Sometimes, that is the best gift we can get. It doesn't happen often that someone is willing to check in with us mentally and emotionally. Because so much of it is physical, it takes a lot of work to be able to move past that, and get into the the one of the most important aspects in living with the monster we call EDS. (Please correct me if I'm wrong)

This is the little revelation I had over the weekend. I started this post earlier in the week, rather annoyed that I felt it wasn't okay to be okay. Now, I may see why someone may wonder if we're okay and if we are, how the hell we managed.

Some of us are further along this road than others. Some of us are in the thick of it and can't quite see the little spec of light at the end of the tunnel. Some of us have just come out on the other side and are ready to live, laugh, love and fight for what is right for us. Regardless, if we face the things that are haunting us, and don't back down, in time we'll be okay.

I guess all we can say is that, it's okay to be okay and it's awesome. It just takes a lot of work.

"I've got a lot of lemons and am trying to make lemonade. Now, if I could only find the vodka!"
(Tiffany, a fellow bendy friend)

Thursday, October 28, 2010

Introducing Jerome, my gj-tube

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

I'm still not allowed to have any of my supplements, so my body hates me today. I'm getting some pretty insane muscle cramps and joint pain. One of my nurses, thought it was because I had been laying down all day. Little did she know, I had been upright for most of the day, and the cramps are caused by lack of calcium and magnesium.

I'm hoping to be discharged tomorrow as I've managed to eat 3 slices of pizza (no gross hospital food for me) and have been up & about. If they don't let me go, this girl will no longer be sugar and spice, but instead will not be nice.

Without further adieu, I will introduce Jerome...

My stomach is still bloated and filled with air. It hurts to fart and burp. The tape from my IV's and Jerome are so itchy and driving me a bit insane. I'm anticipating some pretty crazy rashes and blisters. Oh, EDS you make life so interesting.

"She totally did her hair before surgery in case there was a McDreamy or McSteamy around"

EDS + unnecessary night at the hospital ='s hell.

Well, I have to say this has probably been one of the longest nights of my life. Yesterday, I was suppose to be admitted around 12:00 to hang out until this afternoon until my surgery. Why? Who knows, I'm still trying to figure that one out. My friend and I got to the hospital on time and were told that there wasn't a bed ready yet. They told us it would be a couple hours, luckily my friend lives down the street so we ended up going to hers. Two more hours passed and they still didn't have a bed. We said screw it, and decided to go out and enjoy the beautiful warm sunny weather and ended up hanging out in Chinatown while we waited. I'd take that any day over sitting for hours in a waiting room. We both ended up with fun accessories before there was a bed ready. I got admitted and everything in place.They did some blood work and got a line started, then the resident came to check things out and find out more about me. She was fabulous, much better than the GI specialist who isn't too keen on listening to me and asking my opinion of things. I was able to eat the food I brought and just made myself comfortable for the night.

That's when it all went down hill. I wasn't allowed to take my supplements because they don't know enough about them to know if there will be drug interactions or anything else. Wonderful. That left me screwed. The stuff I take helps with pain, insomnia, anxiety, muscle cramps and just about everything else. Hospital pillows suck. They're thin, covered in plastic and filled with air. Not what someone with EDS needs. There were a million nurses in and out of the room (which is no problem, they're doing their job) but when sleep helps with pain control and you're not getting it, life isn't fun. Luckily, my night nurse kicked ass and managed to get me some Advil, ice packs, more pillows, fluids and did whatever she could to make things more comfortable. She also took the time to understand EDS in all of it's glory.

I ended up having a meltdown at one point. I was so tired, sore and frustrated that I was stuck in a place that was suppose to be taking care of me, but it was the complete opposite. If I were home, I would have been comfortable, in far less pain and probably would have slept pretty well. I'm essentially running on a nap, so the anesthesia is lookin' pretty good right now.

The tube is suppose to go in this afternoon. I'm not on any food or liquid restrictions, WTF? I haven't had anything to eat or drink since midnight last night and plan to keep it that way. I think someone forgot to write a few things down. How is it that I'm restricted for a gastroscophy but not a gj-tube placement?

The need to self-advocate never ends, but I'm okay with it if it means better care.

I ended up back in the ER the other day for dysautonomia, I managed to make it a month between visits so kind of proud...much better than the 3 times in 2 weeks last month. After the first time, I e-mailed the patient relations department with a link to my blog about how awesome the ER team was. Last week they let me know they sent the link to the ER department, which was pretty cool. The doctor who treated me this time, recognized me from my blog. Yep, he read it and I got to tell him what I needed, not the other way around...Epic Win!

"So you have Elhers....I don't know how to say it Syndrome and Dys-what?"
(Pretty much everyone who's taking care of me here)

Tuesday, October 19, 2010

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!

Sunday, October 10, 2010

When family can start seeing a chronic condition for what it is, and the person beneath it all

This weekend was Thanksgiving way up here in Canada,eh!
I spent it at my awesome grandma's house with some of my immediate and extended family. I had a good time, but am glad to have things back to normal.

Usually spending time with family has meant overwhelming stress and anxiety. The idea of having everyone take notice and let me know how much worse they think I've gotten is always a blast. The looks of pity when I walk, lay on the floor, have a new brace, or pretty much anything else, isn't fun knowing they're directed at me. I hate having to answer "yeah, I can't do that anymore" to a lot of questions about what would have been a normal part of life, six months ago. I'm glad the visits to the ER didn't come up, and I was able to pretty much avoid the gj-tube conversation. That would have been the last thing I needed...I can just picture the conversation now "I'm getting a feeding tube put in my stomach because eating is a pretty big problem now". This time though, something felt different. Very different, and I liked it.

There was no pity, staring, questioning and insistence that I needed help when I didn't. After the last year of trying to get my family to understand EDS in all of it's glory, but with a positive outlook, I think they are starting to see it like it is. Or, at least like it is for me. It has taken a lot of e-mails filled with information, resources and many phone calls. My family is pretty tight-knit and we keep in touch pretty well. I've always been open and honest about the whole EDS thing, more than willing to answer any questions, and there have been a lot. I guess it's not everyday your niece or daughter ends up having some crazy-rare-genetic-condition. One of the hardest things for me to deal with was the constant comparisons between my twin sister and I. Nobody really understood why our bodies were so different (mine falling apart more than hers) yet genetically we are the same. I know there's been speculation about why it's just me "suffering" and that I might be looking for attention and whatever else. Yeah, furthest thing from the truth. My sister and I live life very differently, and it also means we deal with life differently. Yes, she also has EDS, and yes, she has a lot of the same symptoms and pain issues. No, she's not as open about it as I am, and our symptoms are different as well. This comes from lifestyle differences, and the fact that we've had our own lives for the last 9 years. Oh yeah, minor detail; there are very small genetic variances even with identical twins which mean huge differences to the outside world. A good example of this, would be with a set of identical twins who have different sexual orientations. The nature vs. nurture argument can easily be blown out of the water, the same goes with the EDS thing. Just because we're identical, it doesn't mean that EDS is going to present exactly the same with us. When I was at the conference I met a few people who are twins, and they've experienced the same thing in regards to differences in symptoms. That was so nice to know...I wasn't crazy it was happening to other people who had another half as well. I've always been sure to let everyone know that I don't do pity, I'm independent and it will not change. They are starting to understand that there's not really anything they can do to make symptoms better and that it's a completely different way of life. They know that I'll ask for help when I need it, and that making a big deal out of an ER visit isn't constructive for anyone. What I think it's coming down to is, something along the lines of acceptance, that although my body is broken and falling apart, I am not.

I feel like they are starting to see me for me again, and not the EDS as much. I hope they see the girl who instead of falling apart and giving up, is the girl who despite all the crap, is always finding a way to make something work. We'll take today for example, I was peeling potatoes. My hands are very bendy, which makes everything difficult. I used a peeler that was great for my grip it was nice and wide, but the handle included a little lemon zester. That meant the handle was a bit "sharp" if you have EDS. I quickly found a way to remedy that problem. Next came the task of getting out all the little nobs and little bits. Any normal person would use a paring knife. The idea of holding a wet, slippery potato in one hand and a knife in the other didn't sit too well with me. I had visions of cutting myself a million times to complete a simple task. I ended up using a little melon-baller and it worked perfectly. Both times I had someone say that they could do it, and not to worry about it. I'm glad it gave them opportunities to see how instead of giving up, or not even trying anything won't yield any success. But trying something new, might just work.

My parents are also learning that freaking out about this whole EDS thing, is a complete waste of energy and doesn't get anybody anywhere. They know that there are things I leave out, and that I down-play a lot, but if I'm not loosing it, then they shouldn't either. Hopefully, they see all of this regression is also producing a lot of other opportunities, and that life is super-unpredictable. So we need to ride out the crappy bits, and enjoy the finer things whenever possible. We've had the "I might need to move home if I get worse" conversation, but we've also had the "I'm not tied down to anything anymore, so I'm going to do what I want until I can't" conversation. I know they're crapping themselves over my plan "C", but they know that I'm happy with my plan and can't wait to make it happen. Between both discussions I think we've come to an agreement that with me, living life predictably is over-rated and making long-term plans is a waste of time. So, we deal with life as it comes, and live from one moment to the next. I wouldn't have it any other way.

P.S. My awesome friend Julie (my bendy friend's wife) made this video. Her timing couldn't have been more perfect. You may want to pass it on to your family and friends.

"Life just is. You have to flow with it. Give yourself to the moment, let it happen."

Thursday, October 7, 2010

baby steps...

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.'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."

Tuesday, October 5, 2010

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."