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."