Sunday, May 30, 2010

I finally did it!

I finally did it, I cried!!!
I am not an overly emotional person. Well, I show happiness, excitement and all the good stuff but not really anything negative. If I'm going to be upset, I like to be alone. I often slap a smile on my face, and go through the motions doing everything possible to keep it together. It's much easier to convince everyone things are fine, rather than to list everything that EDS is messing up. I also don't need any more reminders of how much EDS has taken from me because it has taken almost everything. I think one of the reasons it has taken me so long to just break down and cry about it is, because that's one of the last things I have control over. I can't control pain, regression, and everything that comes with it, but I can control my emotions. I also knew that letting myself cry would mean facing some really hard truths and things I have been consciously putting on the back-burner because I couldn't deal with it at the time.

The thing that set me off was a fighting with the cardiologists. I wanted to get the dysautonomia thing checked out, because I'm having new cardio issues and think it should be looked at. The geneticist was adamant about me getting tested for MVP and other EDS related problems every year. It has been almost a year since I was last there anyway, so I figured going back for a follow-up considering my new symptoms would be a good idea. She didn't feel a need to see me since my tests last year came back normal. My heart-rate sky rockets and I feel like blacking out while at rest, I have more arrhythmias when laying down, and I feel like I'm about to jump out of my skin. I guess that the concept of things changing over a year's time and a neck injury doesn't make sense to some. This feels like the days of pre-diagnosis. Why do I have to fight for things that have potential be life threatening? I don't feel like being a patient who was neglected and ended up as a statistic. So after holding it together, and bottling up everything that EDS has thrown at me for the last six months, I finally had a melt-down. I didn't get to let it all out, I was just getting started but had to go to work. At least I let out a bunch of tears, got to yell and throw a few things.

Since then, I've been able to let myself be upset when I feel like it. I still hold it together, but am able to let go and for me, that is huge. I'm hoping this will be something I can continue because life with EDS is getting harder each day.

I had the worst yet, one of the most important conversations with two of my work supervisors today. We had the "I shouldn't be doing this for much longer talk." I knew it was something that would eventually have to happen, but it was still a painful blow. I don't want to give up my jobs; I love them and am very lucky to wake up wanting to go to work. I had to take a lot of days off for both jobs due to feeling like crap and not being able to work. I'm still in the works for getting all my school stuff sorted out and am suck in the middle of an unwanted, horrible transition. I'm at the mercy of people who are making decisions that will affect my entire life, based on a bunch of pieces of paper. Unless they've been reading my blog, or have been talking to me for the last year, they have no idea how bad things really are. I don't think anyone really knows how bad it is. I'm at the point where I'm seeing one light fading, but not seeing the light at the end of a really long tunnel yet. I know it's there, but right now I'm stuck in darkness and it hasn't been fun. Forget the force-field super power I wanted; now I want night vision.

So that's enough of the negative happenings, I choose not to focus on it because it sucks the life out of me. I thrive on the positive, it makes me look ahead and it's exactly what I need right now.

The weather in Toronto has been HOT! Like the same temperature as Hawaii kind of hot. I have an air conditioner, but it doesn't fit in any of the windows of my current apartment. Since I could easily live my entire life outside, and have a tent I've been sleeping on my balcony at night. It's so much cooler and comfortable. The only down-fall is waking up at 5:30 each morning to the loud birds and the odd person who feels the need to yell at the top of their lungs during the night. I sleep just as well, if not better outside and my tent smells like camping.

I'm also not a fan of eating in the morning. Food is the very last thing I think about when waking up. I had been getting pretty good with eating something in the morning, but with the heat the only thing I want is something cold. I'm not a fan of smoothies, I don't like the texture, and milk mixed with fruit is gross. I came up with the idea of smoothie-sicles. I blended mangos, strawberries, with vanilla almond milk and Chia seeds (woot! Protein and omega 3's). I poured the smoothie into popsicle molds and threw them in the freezer. Now I get the benefit of a good breakfast, it's something cold and satisfying.

After the wonderful neck sublux, I got back on my bike. Bike ='s freedom, nothing more to say.

Canoe and kayak season has started. I can't kayak anymore but I can still canoe (I think). I'm hoping to get back on the water this week and get to spend as much time in my happy place as possible.

I don't know if it's the placebo effect, but the new homeopathic remedy I've been taking for pain control has been working. I'm still sore, but it's not nearly as bad and it costs pennies. If it's the placebo effect, who cares!

I've discovered that I can still sleep on the floor and wake up feeling great. It takes about 6-7 pillows but it's all about positioning them to keep my body together. If I sleep on something too soft my body just collapses on itself, literally. It turns out I don't need anything fancy to sleep on, just something firm and a lot of pillows.

One of the kiddos I teach is really into practical jokes right now. I've taught him a few, but he doesn't quite understand that there needs to be an element of surprise. Yesterday I introduced him to pie in the face trick. It was epic! At first he had no idea what to think, but then thought it was the most hilarious thing in the world once he realized what happened. He then got a chance to do it on me, and we ended up having a whipped-cream fight. We also talked about why and how it worked. Yep, I get paid to have food fights and encourage this kind of behaviour. Playing practical jokes takes theory of mind, planning, patience, creativity and being okay with a potential let down. These are all skills that need to be taught and used in life. So yes, I am completely justified in having food-fights at work. Technically, it is called Natural Environment Teaching. I also get a laugh out of the things I say to the parents "Thanks for letting me smash a pie in your kid's face, it was such a great teaching opportunity."

That's enough blogging for me today, I know a lot of us are in the dark right now thanks to EDS. Remember that you're not alone in this, and there are people who truly get it. Let yourself just be, whatever that is and just keep swimming, swimming, swimming.

"Whatever tears at us, whatever holds us down, and if nothing can be done we'll make the best of what's around."

(Dave Matthews Band, The Best Of What's 'Around)

Thursday, May 27, 2010

Dysautonomia ??

We all know living with EDS is never simple and I think for me, it just got more complicated.
My typical symptoms that go along with EDS have been crazy since I subluxed my neck three weeks ago.I originally wanted to get blood work done to see if there was anything of concern. I was talking to another bendy friend of mine who suggested that it sounds like Dysautonomia, esp. after the neck sublux. I went to the GP where she didn't know what to think, other than to see if I could get genetic testing done for it. I don't meet any of the 5 criteria (being of a certain ethnic minority, no papillae on the tongue, no tears when crying and two others that I don't remember). Apparently my insanely high pain tolerance has nothing to do with my symptoms.

Interestingly enough, I did my own research and found that dysautonomia is very common with EDS and that I show almost every sign of it.
  • - Increased heart arrhythmia's when at rest or laying down
  • - Increased feelings of dizziness, seeing stars and almost passing out while at rest
  • - Increased trouble regulating body temperature
  • - Insane reflux, even with just water
  • - Depression is a big problem, more than the "EDS is ruining my life" that it was before
  • - Sleep is a mess, I either have insomnia or can't get enough sleep
  • - Increased trouble breathing and chest pains that I usually don't get

I've been taking all of my supplements as I should be, eating what I should be and not doing anything stupid or careless.

And there's always the most amazing source of info on the Facebook EDS discussion boards.

I also have a bunch of my other doctors looking to it, hopefully we'll have some kind of answer soon.

So...........I have no idea what to think, or where to start.
Any suggestions?

"Living is easy with eyes closed, misunderstanding all you see..."

(John Lennon)

Sunday, May 23, 2010

Bicycle,bicycle, I want to ride my bicycle....

What could be better than a warm sunny day on a bike?
Well a lot, but it's up there with everything that makes me happy.

Biking is still on my "can do" list. (Happy dance!)
I'm not partial to where I ride, to me it's freedom and it's wonderful.

I love the adrenaline rushes I get from riding in downtown rush-hour traffic, especially in the financial district. Something about trying to get to my destination with craziness surrounding me makes me feel full of life. I have to be quick on my toes and ready to react in a split-second. It's also fun to be the girl on the little bike making it through the intersection before anyone else in a car does.

Going fast makes me feel like I'm flying. I can feel the wind on my skin and my body moving faster by my own power that I wouldn't otherwise be able to do on my feet.

Riding alongside the water is refreshing and comforting. The air smells different (yes it has a smell and it's lovely), it is cool and sometimes crisp. The plant life surrounding the water is vibrant and lush. To me there is nothing more comforting than water. Anything from paddling to taking a shower makes me feel whole. I will go into the shower with a lot of thinking to do, and come out with solutions and the confidence to get started. Paddling... don't get me started. To me, the world is a better place when I'm on the water. Anyway, just imagine feeling like you're flying past the thing that makes you feel whole. Getting off the bike to sit by the water, or to get in is even better.

Paths and trails are also a favourite of mine. When there's a trail, you can relax, zone out a bit and enjoy what the surroundings have to offer. The thoughts of traffic can be put on the back-burner and you can just go. You're not forced to keep at a certain pace, and there are lots of opportunities to stop and go whenever you please.

Biking offers the freedom to choose what we want to do. Something that doesn't happen often with EDS. I can choose the direction I want to go, the intensity at what I want to ride, and I can stop and relax whenever I want. It allows me to be more mobile than I can sometimes be on my feet. It's also low-impact and one of the very few things that don't make everything sublux and dislocate.

When I went looking for a new bike there were a lot of things to take into consideration. I ended up with one of those small folding bikes. Yes, it looks like it should be on the Pee-Wee Herman show but it works well for me. The wheels are small, which means I can pick up speed with less energy, it's light, there's no cross-bar in the middle which means I won't sublux my hips when getting on and off and it's just a lot easier to get in my apartment. I've had to make some minor modifications to my bike as my needs have changed. Different seat, put on different handle bars and cut them down so my shoulders wouldn't dislocate, not having the seat as high as I should to avoid hyper-extending my knees. I also moved the gear shifter, and bell so I don't mess up my hands. If I could only find a way to make riding in the winter easier.

"If everything is under control, you're not going fast enough"

(Mario Andretti)

Thursday, May 20, 2010

Baby Steps

I'm slowly being able to get back to life and am very happy to say that the killer headaches/migraines are now gone. My neck is still a bit crunchy and needs to be supported throughout the day, but it's nothing close to what it was a week ago. I went back to taiko the other night and it was fabulous! I was really sore after-wards but it was well worth it. I'm no longer spending ridiculous amounts of time sleeping, but am back to having insomnia again. Although sleep deprivation is no fun, I come up with my most brilliant ideas and blog posts between the hours of 2-5am. That's got to count for something right?

I just started a new homeopathic remedy to hopefully help control pain, how nice would it be if it worked?

I'm on my way to getting back to school, the mountain of paperwork seems to be getting bigger, but I'm making little dents in it here and there. My funding application for my AFO's is being reviewed, crossing my fingers they approve it. I need them ASAP, my ankles are getting worse as each day goes on. Speaking of ankles, I did another modification to my ankle braces. For a while, I was taping ankles and super-gluing stick-mat to the tape for taiko, so I could have some traction. During my two weeks in bed, I had another brilliant idea and decided to give it a try. It involves Velcro, Gorilla-glue and a cut-up yoga mat. Now, I have soft, durable and removable traction whenever I need it. I still refuse to wear shoes with my braces in the summer, it's too hot. I'm hoping I might be able to do the same thing with the AFO's when I finally get them.

Other than that, not much else has changed. I'm still sick and tired of being bendy and tired. EDS is exhausting in every possible way. Ugh! I know a lot of us in the bendy world are having a really, hard time with all that EDS has to offer right now. When your entire body doesn't work properly, just trying to make it through the day can feel like an overwhelming and daunting task. Staying in bed is often appealing, but it won't get us anywhere and EDS will never go away. I came across this video and think we should all do the same thing. Especially, the little happy dance.

That's it from this end for now, sending positive thoughts with sunshine and lollipops out to the universe.

Life is not a journey to the grave with the intention of arriving safely in a pretty well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming "Wow! what a ride."
(unk own)

Friday, May 14, 2010

Choosing to out-crazy the crazy.

I often find myself thinking what life would be like if it weren't so crazy and unpredictable. I'm not sure if I'd like it. I don't like stress, anxiety and insomnia just as much as the next person but I also don't do boring. This last week has been crazy and boring with nothing in the middle apparently just the way I like it. My body appears to be a reflection of that. I've been needing some kind of treatment (chiropractic, massage or acupuncture) about every two days for the last 1.5 weeks to keep my body moving forward and myself along for the ride. Thank you subluxed neck. I'm sick and tired of being bendy and tired.

My messed up neck has given me a lot of time to think, which has lead me to be on opposite ends of my emotional spectrum. I'm usually about to drown myself in a puddle of tears or I'm care-free. I prefer the later and that's what I'm trying to focus on. I'll be honest, avoidance sometimes works for me. It's not that I'm trying to avoid letting myself just "be", but rather putting it on hold. I have enough days where I could care less about what happens next, I might as well do something about it when I'm on the up-swing.

After trying to work this week with my neck, I have come to realize that this might be a good time for change. A change from a lot, firstly from work. I love my jobs but can't do them forever. I'm on to plan "C" and filling out the mountain of paperwork required to apply to school as a student with a disability. While at my geneticist appointment earlier this week, the topic of "what next" came up. I have my idea, and know that I'd be good at it but apparently I should be a genetic councilor. No thanks. Yes, experience counts for a lot that is not learned from a book or a lecture but I like being able to finger-paint and play at my job. The world already moves too fast, and we forget to just have fun with no strings attached. How much literature is out there saying that we need to let our creative juices flow, play outside like a kid again and take time to have fun ? There's a ton. Imagine that being a huge part of your job, and being able to share that with a kid who's stuck in a hospital and just needs to be a kid. That's my plan "C" and I can't wait to start. Mainly because I've been at home bored out of my tree and feeling like chewed gum for almost two solid weeks. I've had to let myself be upset about this but I'm trying to see it as a new opportunity and a place to grow.

I failed to mention in my last posts that because of my insane reflux I'm at a high risk for esophageal cancer.yay. Scopes, biopsies and countless appointments are part of this new-ish reality that I was hoping would be rare. Once again, avoidance helps. It helps me to forge my own trail and not look back to often. I know it's something I need to be aware of, but it's not something worth stopping life over, even if the outcome of those tests aren't favourable. Life with EDS can often suck, but I choose to keep moving.

Our bodies are in a constant state of change and most often it's not the good kind. It forces us to either sink, or evolve and swim. I choose to evolve and swim. That means finding new things to keep me happy, inspired and focused. Spending countless hours in bed made me really think about what I would be doing with myself this summer. Kayaking and climbing are of the question, it makes me want to vomit. Those are some of my favourite things in the world. I was inspired, had goals and couldn't have been happier doing them. Now what? Maybe a few more days in bed (which will be sadly happening) will lead me to some more opportunities. Crossing my fingers for something just as exciting.

I've had to go through a change in friends. It hasn't been fun and I wish it didn't have to happen. The reality is, we're on different trails and it has been felt that it should remain that way. The feeling isn't mutual but it's happening for a much greater reason than what I am aware of right now. That's what I'm choosing to think anyway.

A lot of negativity has crept in these past couple of weeks. I can feel it, and it's gross. I don't necessarily think negativity is something horrible but I'm happier with out it. Finding the positives in everyday life with EDS isn't easy. Everything is a choice but negativity doesn't count. It sucks up our ability to see things as a choice and makes us fall victim to pessimism and irrationality. I choose not to be a victim of negativity and see things for what they have the potential to be, not for what they couldn't be.

Just when you think life is crazy enough, something else pops up. I have chosen to out-crazy the crazy and just roll with it.

"Life's like a movie, write your own ending."
(Kermit, the Frog)

Tuesday, May 11, 2010

It's been worth it!

It has taken me a long time to get to where I am now.
Through the past 13 years of finding my diagnosis I was told that I was looking for attention, nothing was really all that wrong, and I was a hypochondriac. Then I found EDS and my whole world started to change. I no longer felt lost in the medical world, and pieces of my crazy puzzle began to fit together. Everything finally made sense as my body slowly fell apart. It started out with dislocating shoulders, joint pain and two doctors. I had GP and an orthopedic surgeon. With a diagnosis and a TON of work I have a great team of people who consist of the following: Geneticist, Orthopedic surgeons, sports medicine specialist, cardiologist, gastroenterologist, speech and language pathologist, brace specialist, physiotherapists, massage therapists, acupuncturist, chiropractors and a natural-path. There are a few others in the mix as well.

Getting all of these people on the same page wasn't easy. Natural medicine seems to be very misunderstood and lacking in the respect it's getting. My choice to go to natural medicine was an easy one, and was one of the greatest decisions I've ever made. Before I was officially diagnosed, I got a lot of flack for going the natural route. Even after trying a boat-load of medications, joint injections, seeing countless doctors there was little faith in it. My entire world changed after seeing the geneticist for the first time last year. They (geneticist and genetic councilors) were the first people I met who knew what EDS was (obviously), but they truly understood everything it involved. It was the first place outside of natural medicine that I was listened to, believed and essentially understood. I came in armed with copies of my files, a ton of research and ready to advocate for myself. The greatest thing was that I could finally let my guard down, they knew why everything was happening to my body,and I finally didn't feel like I owed anyone an explanation. Lucky for me, I got referred to a really good GI specialist, and cardiologist. Both of them are working with me in my goal to keep away from medications and chemical grossness. They don't completely understand it, but accept it for what it is and that it has had a very positive impact on me. "She is on a number of homeopathic and natural remedies, which include calcium-based products, iron-based products and a few other things that are not clear to me." (consult notes from GI specialist) I love his honesty, that he isn't resistant to it and has let me call the shots.

I was back at the geneticist yesterday for a follow-up and another test. The DNA tests to rule out classical EDS came back negative, but they wanted to do a skin-biopsy to see what that showed. I know it won't change anything, except maybe the type of EDS. When I was there last year, I had already decided that I wasn't going to have my own children, and didn't want anything to do with all the risks involved. It didn't seem to go over well with the geneticist who thought I was making a bad decision. After discussing it rather intensely we agreed to disagree. He essentially wanted me to know all my options, and I guess wasn't expecting someone who already had a decision. This time around, they wanted to know if there was anything else I wanted help with. They suggested a pain clinic, which I wasn't too sure about in the beginning but found out that I'd meet other people who "get it". I got up the courage and asked to see a female OBGYN (yeah I'm sure you all wanted to know that) but there's a reason... I want my tubes tied ASAP. No bendy children for this girl! I thought I was going to get a lot of resistance this time but there was none. I know this does not guarantee me anything but it's a big step in the right direction. I'd like to think my being insanely pro-active and doing research had something to do with it. I also have the option of getting more referrals to even more orthopedic surgeons but I'm going to avoid seeing them as long as possible. I have major issues with orthopods'...I kind of hate them and already see enough doctors as it is.

On another note, that neck issue is still going strong, but seems to be getting a little bit better each day. I've been to the chiropractor, acupuncturistx2 and had a massage in the last week. When I goofed my neck like this last year, it took me about a week to get help for it and recovery was a long road. This time I decided to try and be smart about it, and it's been working. I don't like spending my b-day weekend in bed (the weather was gross so it worked out), and missing work but it's all about the baby-steps. I'll be making up for the lack of a b-day later on, and will party like it's nobody's business! Ice-packs and my neck brace have been my best friends. My acupuncturist introduced me today to these amazing Chinese medicine patches used for muscle pain. They're on the stinky side, but the greatest thing in the world!

I got to meet another bendy friend yesterday and I don't think I'll ever get tired of it. She had a pre-op appointment at the same time I was meeting with the geneticist. We figured it would be a good idea to meet after our appointments and vent, because they're usually crappy. She's a super-cool girl, and we had a ridiculous amount of things in common. Sadly, a lot of it was all the negative things that EDS has done to us. It was also very nice to feel comfortable enough to let my guard down and just talk about it. I think at one point we were both about to cry while eating dinner, but it was nice. There wasn't any judgment, or stupid comments about not being positive enough. We went out for tea after wards and both of us literally sunk and melted into the chairs. Our bodies had enough and were worn out, we knew the other person was feeling it too and didn't have to say anything, or try to explain ourselves. It sucks that we're meeting on these terms, but someone else really "gets it" and that's amazing. One day we'll round up everyone in the bendy world and start a revolution!!!

Tips on LIVING with EDS

Don't settle for something you don't want, be pro-active and keep on it!

Did you know a lot of Thai food is soft, gluten-free and nutritious? Perfect for EDS!

Try to find the positives in all of this. It can be really hard, but it makes life a lot easier when everything seems to be going wrong. What's worked for me, is finding three good things about my day before I let myself fall asleep at night. It could be something simple like a delicious sandwich you had for lunch, but it was something and that counts for a lot. It also helps you fall asleep in a better mood, rather than crying yourself to sleep over stupid EDS.

" What you are is what you bring, you've gotta cry before you sing."
(Chances by Five for Fighting)

Friday, May 7, 2010

Things that make my crunchy kinda day better

Guess what?
It's a pj day here.
The weather as been strange this past week, very sunny and warm mixed with cold rain.I feel like a weather reporter, but I probably make a better human barometer.

At some point early this week, I goofed my neck. The crazy weather hasn't been helping either. As the week went on, my headache (which I never really get) got worse.The muscles in my neck, shoulders and jaw got really tight. This morning I woke up with a massive headache and a crunchy neck. I don't know how many of you get this but, my neck felt really unstable trying to hold up my head that now feels heavy, and with any movement....crrrrrrrrrrrunch. It feels so gross.

I got a little relief after seeing the chiropractor earlier today. It's amazing how everything can tighten up even after getting acupuncture three days prior. Holy annoying Batman!
Ice packs, neck braces and my TENS machine are my best friends today.

I think my blog is lacking in the photo department, and I have decided to do something about it. All the pictures in this post are going to be of things that make me feel like a million dollars.

Cold beers on the beach with friends

The best dog in the world. Really, who else has a dog who will come paddling?

Chilling with Irish cows in a forest while a storm passes

Reading a good book in the warm sun

Didgeridooing and Kayaking

Camping on a quiet lake in the middle of no-where

Hiking in breath taking scenery

A night out with the girls

More hiking in the rain

A dog who will do anything for cheese.

Urban paddling at sunset

Team Canada

Here's to hoping tomorrow's better.

"It's never the end of the world, it's already tomorrow in Australia."
(Charles Schultz)

Monday, May 3, 2010

There are benefits

So my last post pretty much sucked in terms of inspiration and positivity. However, it was honest. I don't want to pretend I'm protected by a bubble that surrounds me from all of what EDS has to offer. A force field, like Violet in the Incredibles would be cool though.The geneticist also wants be back for a follow-up and some more tests. yay.

As we all know, EDS makes us put up with a lot and the majority of it,we could easily live without.There are some benefits to being bendy. Here is a list of things that have benefited me.
  • Go-go Gadget arms (Inspector Gadget). I can usually reach things that otherwise couldn't be reached for. With the exception of things that are up high, as I'm pretty short.
  • I can scratch my own back.
  • I can fit into very small spaces, great for hide and seek as a kid.
  • Fitting into small widows is great for watching the Santa Clause Parade
  • I don't have to bend over to shave my legs
  • Monkey toes are awesome. I can pick up almost anything.
  • I'm awesome at yoga without trying.
  • Being able to do things with other body parts; like open doors with feet
  • After not being able to use my arm for about a year, I can almost do anything with one arm.
"Obstacles don't have to stop you. If you run into a brick wall, don't turn around and give up. Figure out how to climb it, go though it or work around it."