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.

http://www.youtube.com/watch?v=2eINj83djQU

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

baby steps...

Hello,
Happy Friday + Long Weekend!!!

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

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

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

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

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

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

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

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

So close I can taste it

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

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

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

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

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

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

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

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

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

Three good things...

I hope this post will be really interactive. I'm curious where my blog readers are coming from, and would like everyone to put in their two cents. The last two weeks have been nothing but hard, exhausting and gross. What I find helps, is to focus on the positives in each day. There are always at least three good things that happen to us before we go to bed, and that in itself is a small victory in a horrible day.

My three good things for today:
1) Got out of the house to get some yummy food (that I hope can be eaten), scored some new pen/pencil grips, supplements and vitamins drink for plan "D" to stay out of the ER.

2) It's a beautiful day and everyone is out. It's nice to see so many smiling people enjoying the little things life has to offer.

3) Grey's is on tonight. One of my bendy friends is coming over to watch, and we're going to chow down on ice cream :)

What are your 3 things ?
Don't be a stranger....

"Life does not have to be perfect to be wonderful"
(Annette Funicello)

ER visit # 3 in 2 weeks, Holy annoying Batman!

Guess what I spent the afternoon doing?
Guess what they gave me?

I think today was a result of having a subluxed neck (slowly recovering) and dysautonomia issues at the same time, both are hard to bounce back from on their own, combined appears to be a recipe for disaster.

I thought after Friday's fiasco, that I was all sorted with some new natural liquid add-in electrolytes, and spending the entire weekend in bed. Nope.
I did improve and felt like I was on my way to feeling human again, but when I woke up this morning after sleeping 10hrs, I felt like death.

Yesterday I was able to hold down a meal's worth of food and about 2.5L of liquids.
This morning, not even the electrolytes would stay down, my heart was a little nutso any time I changed positions, dizzy, sweaty, on and on...dysautonomia.

Got 1L of fluids and 50mg of Gravol(IV)
Blood work came back normal (surprise!!!, they never believe me that it's dysautonomia and not some crazy bacteria)

Was a pretty successful trip, didn't have to fight with stupid dr's, didn't need to chew up any gross meds, scored a bed right away and.....I got to take out my own IV, it made my week :)

I got the usual "Well since you know more about this than I do, you know when you need to come back for fluids..." and was discharged.

Funny enough this morning, the GI specialist called to say that they've bumped up the gj-tube surgery (no date yet)...I'll be calling them again to see if they can move it up sooner. Just think...I can push fluids through my own tube and avoid the ER all together.

Dysautonomia has slammed the EDS community this past month. Almost everyone I know, in person and online has been in the hospital or ER because of it. I was on facebook chat this morn. with one of my very close bendy friends who's stuck in the cardiac ward of John Hopkins with POTS. They can't figure out what to do with her :( If it weren't for social networking, and us being pro-active we'd probably all be dead by now. Thank you Facebook

http://www.youtube.com/watch?v=CmyUkm2qlhA

For all by bendy friends who's asses are being kicked with POTS and whatever else, Just keep swimming and fight like hell.

2 ER visits and 1 subluxed neck in 10 days, I'm on a roll!

EDS has been kicking my ass, so in the spirit of feeling like a million dollars:
This will be another edition of copy+paste e-mail that was sent to my awesome natural doctors.

As a heads up, this e-mail isn't filled with sunshine and lollipops...instead sarcasm, which is sometimes even better.

So in the last 10 days I've managed to sublux my neck and end up in the ER twice. I'm on a roll.

Yes, you read it right...I went to the ER again on Friday aft.
Despite trying pretty much everything, the killer migraine from my subluxed neck had gotten a lot worse by day 4 and I was pretty much incapacitated.
I was attempting to get ready to go into work for 3hrs, and didn't make it that far. The dysautonomia started acting up like last time, except my HR would go crazy any time I changed positions. It took me 4 hours to grab a shower and get dressed...I kept having to lay down and take breaks. It was like having the worst hangover of my life x's 10.

Before I decided to go, I talked to a few EDS friends to make sure I wasn't being a hypochondriac about it and was glad to know that I was pretty sane. Only one bendy friend said she wouldn't go, but then when I re-phrased the question, and asked her if she'd go if she were living in Canada where she wouldn't have to pay $15,000...she told me to go. Thank you Canadian health-care.

I went in with my last ER report and some of the dysautonomia info from the EDNF conference...They got me started on fluids right away, and some other IV drugs that were suppose to help with pain and messed up stomach. I asked for the IV to be put in my hand so I could move the rest of my body to avoid dislocations, and the nurse put it in my wrist. Hahaha my wrist started dislocating after 15 min, and I couldn't put it back in because of the line. Awesome. They were also out of beds, and didn't really understand no matter how I explained it, that sitting is the worst thing I could do for myself, and it would affect my entire body. They thought since my neck was supported with my brace that I was fine...So I spent almost the entire 6hrs in a chair and being moved from place to place. I wasn't allowed to lay on the floor either :( The pain meds didn't really do anything, and all that sitting made it worse. My super-powers were getting low and it got to a point where I ended up crying because everything hurt so much. This girl doesn't cry over pain, and hasn't since age 6.

My ECG came back normal, but I think it's because they had me laying down for about 15min before they did it. Right after I got up, my heart went crazy again and anytime I changed positions after that. I let them know but who was I kidding, I was just a patient.

The dr. was a bit of an ass. I'll give him 50 points for knowing the basics of EDS, but other than that he was useless and wouldn't listen to me. He didn't know anything about autonomic disorders esp. with EDS, and wouldn't let me explain, or read any of the info I brought because he had a god complex. He then tried to refer me to a rhumeatologist after I told him they would be useless to me and that I've gone the natural medicine route.He thought I needed x-rays of my neck, after I told him they'd come back normal, just like the millions of other x-rays, and scans I've had. Guess what? They came back normal, surprise!!! He said there wasn't really anything he could do, didn't know what to do, and sent me on my way when the fluids were finished. He did say that the gj-tube was a good idea and would help a lot.

So.......I ended up leaving in worse shape than when I went in....awesome.
As far as meds, I know they gave me Gravol (IV) and Advil (in a yummy pill that needed to be chewed and swallowed).
I have no idea what the other two IV meds were, I can't read the dr's writing on the report. They were kind of useless anyway.

2 days later, and I still don't want anything to do with food, I'm not hungry at all, but am forcing myself to eat. Never, thought I'd say that...
My neck is still crunchy, feels unstable and I'm on day 6 of migraines (which is finally starting to feel a bit better).
That awesome new sleep pattern that we just got started has been thrown out the window. I've been wide awake at 4am for the last two nights. Gotta get back on it...

The one benefit of that epic failure of an ER visit, is that I'm going to use it as ammo. to get the gj-tube surgery moved up asap. At least when it's done, getting fluids, electrolytes and food in me shouldn't be a problem, and the ER visits will hopefully be non-existent.

I'm not sure if it's the weather change, but EDS and dysautonomia has been horrible to a lot of my bendy friends lately. There needs to be a way to do body transplants...one day...

That was written on yesterday afternoon. As of now, I still have the migraine/crunchy/unstable neck and am still "POTSy". Who need to run the track, when you can just stand up and get your heart pumping like mad that way. Running is over-rated.

"To be kind, honest and have positive thoughts; to forgive those who harm us and to treat everyone as a friend; to help those who are suffering and to never consider ourselves superior to anyone else; even if the advise seems rather simplistic, make the effort of seeing wether by following this you can find greater happiness."
(Dali Lama)

Trust n' stuff...

I don't know about the rest of you, but this is something I'm having a lot of trouble with. Like a lot.

Sounds so scholarly and academic doesn't it?

Not only have I developed a strong ability to bottle things up, but with it comes the ability to trust no one. Yeah, I make them sound like some very cool super-powers but they're clearly not. In fact, it's the opposite and it really needs to be worked on. The reality of it is, I'm the only one who can change that. Anyone could tell me until they're blue in the face that I can trust them, and I still won't. Not at least until I let down my guard, forget the past, and just do it. Out of all the people I know, there are only a handful of people who I can feel comfortable enough with to say what's really on my mind, and know that I won't regret it, or get stung.

I feel like the people I should be able to trust the most, are the ones that I trust the least. I really don't like it when I say something, and it gets misconstrued then assumptions are made. When I say "I wouldn't say it if I didn't mean it", or "I say what I mean, and I mean what I say", I don't think people trust in me enough to actually believe it. I'd like to think that when I say something, it's pretty direct and I'm always more than happy to elaborate if necessary.

What drives me absolutely insane, is when people assume. Argh! There's nothing worse. Just think, if we all spoke openly and honestly, things would sting a little bit. However, the sting would hurt a lot less than if we were to shove it all under a doormat and go along as if nothing had happened. Assuming doesn't get us anywhere. We can't expect someone to know something without telling them, and they cant' expect us to feel or think something unless we say it. Even if you have twin-powers.

I strongly believe, it is up to us create our own paths in life, and find our own way. Nothing can make us happy besides ourselves. It's a lot of really hard work to be able to take the cork out of that proverbial bottle and let whatever is inside flow. Yes it's scary and it hurts that's why we bottled it in the first place. Just think of it as some kind of wine. We put it on a shelf to age and with age, it gets stronger. That's how all the bottled stuff we didn't want to deal with works, except it gets stronger in terms of being painful and scary. Now just think that whatever is in our bottles is carbonated and they get shaken up....We all know what happens....The pressure builds, and builds. When our bottles are opened, even just a little bit, it's a mess of epic proportions.

I feel like each time I put some trust into someone and they do something that causes me to loose trust in them, it's a few shakes in that carbonated bottle. At this point my bottle has really been shaken up. Picture a pop bottle on a trampoline with about 10 people jumping on it...That's a lot of shakes, big shakes.

I know that there are a few people who can start turning the cap on the bottle and release all that pressure. I can feel the gasses release (not literally) and the painful, scary stuff starts to surface...I immediately put the cap back on, and turn it tight. I know it's an opportunity for me to trust someone, but it doesn't feel safe, I feel vulnerable and end up hyper-vigilant. Definitely not the most productive thing.

I also try not to let negative things people say, get to me. Most of the time I like to think it rolls off my back, but nope...I put it in the bottle, the one that's been shaken. I guess it's because I speak with honesty and truly mean what I say, that I expect everyone to do the same. Why would we say something if we didn't mean it? So when it comes down to it for me, if they've said something hurtful, it's not that they didn't mean it, they meant it. Now the confusing thing is wether they meant it in a loving, honest, wholehearted way, or if they meant it out of spite, anger or whatever else they may be feeling. That, I can't tell, but it stings none the less.

I'd love to be able to open my bottle, and get the stale grape juice out, and put in something like rum, which is yummy and won't get gross. I hope you catch my drift. I know some day, I'll be able to trust again. But for now, I need to open those bottles bit by bit and learn to trust in myself that I can deal with whatever is inside those bottles. Can't say I'm looking forward to those crying headaches, but my heart will feel lighter, so I'm okay with that, Kind of. Maybe.

"No one can make you feel inferior without your consent"

(Elanor Rosevelt)