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)


  1. I'm glad you're able to let out some of the frustration and resentment. The next step is to stop bottling... I haven't gotten that far...

    As far as the doctors go, fight as hard as necessary to get tested. Have you thought about POTS (Postural Orthostatic Tachycardia Syndrome) being the cause of your heart issues? It seems to also be a common thing with 'bendys.'

    Also, on the YEARLY testing front... Bendy people change a LOT faster than non-bendy people. That' why it's recommended to get your YEARLY testing done, well... YEARLY... Regardless of how normal the last tests were.

    See if they'd agree to attaching you to a 24 hour heart-rate monitor, so it can record what's going on throughout an entire day.

  2. If you don't mind sharing your secrets, what exactly is this new homeopathic remedy you've been using for pain control? I've been seeing a pain management doctor, which has been helping some, but I'm on about 10 different medications about a 1000 times a day, and I HATE being that drugged up. I'd love to be less reliant on all the narcotics.