Sunday, February 27, 2011

I might just have my life back...

I haven't written much about Jerome (my J-tube) and being hooked up to a pump for a while now. I'm going to knock on wood and say that I've set a new record for myself. I haven't been near an ER for 1.5 months. How awesome is that?!

I'm hooked up to a Kangaroo-Joey pump for 9-18 hours everyday. I love my pump, it goes in a little back-pack and I can turn it up-side down and shake it without setting off any alarms. It's totally worth the huge price-tag. The picture makes it look big, but it's small, I promise.

It sounds like a pretty big range, but it all depends on what my body is doing that day. I need about 200-300mls/hr of fluids concoction (water, electrolyte mix and salt) to be able to function. Any less will make me crash and I get all dysautonomia-y, any more than that is too much for my body and I'll start refluxing and barfing. Yes, that's suppose to be physiologically impossible, but I have EDS and the sphincters that keep everything down are pretty much shot.

Since figuring this all out and keeping on top of it, I'm feeling so much better. I will even dare to say that I'm feeling good. We know that hydration and salt are key to living with dysautonomia, and with my pump I have it all the time. Before,when I'd have to go to the ER, I'd feel so much better after getting enough fluids and I'd be symptom-free for a couple of days. Now it's like having IV fluids all the time. The hardest part of actually getting fluids concoction in, is when I get up in the morning and need to be hooked up right away. The problem is because I'm not hooked up at night, I feel gross in the morning and have to wait until my body has had enough fluids concoction before I can function. If I wait around too long before I hook myself up, then I'll feel worse and go back to where I started before life with a pump, which was horrible.

I still have the odd days when I feel gross, but it's been rare and not nearly as intense. Now I have energy, and I don't have most of the symptoms. I still reflux, sometimes like crazy but it's not nearly as bad. I can get up and go through the day without needing to lay down and rest as much. I still get tired,but it's not like when it would take me 4 hours just to have a shower and get dressed. I'm starting to get hungry again, which is sounds so weird. I'll still go 24hrs without feeling the need to eat, but now I want to eat and am starting to enjoy food again. Before, I'd look at a plate of food and want to cry, the thought of eating repulsed me. Last week I went to my parents house and had two servings of dinner. I didn't notice until there were comments about how I was eating again, it was the most I'd had during a meal in about a year. I don't really have the adrenaline rushes and insomnia until 5am anymore, I fall asleep around 1am and say asleep through the night. I'm not dizzy all the time anymore, and love the fact that I can lay down without feeling like the room is spinning. Dysphagia and choking aren't as bad either. I still choke on everything but it's less frequent and swallowing is a bit easier (when the hormones aren't crazy). I have replaced the brain-fog with an attention span, and can carry on a conversation and think again. The tachycardia, palpitations, chest-pains and low blood-pressure are still kicking around but like everything else, not nearly as bad. I can get up from sitting with only feeling a bit dizzy and seeing stars, instead of blacking out and having the room spin. I essentially don't feel like a zombie anymore and it's wonderful.

I have even dared to do my own little experiments on myself. Looking back, I've had all the dysautonomia symptoms going on for years, most of it starting when EDS started. Keeping in mind it was on a much smaller scale and didn't affect me nearly as bad. I took myself off the supplements that were helping with the insomnia, ADHD and anxiety. Interestingly enough, I've been feeling fine without them. Part of me is wondering if I've had dysautonomia all along, with it being just a lot more mild, and presenting as something else. I'm still taking all my other supplements but the whole thing is pretty amazing if you ask me.

Everyone keeps telling me how much better I'm looking, so I know it's not just me. The best is when people tell me that I've got the spark back in my eyes and I seem so much happier. I am a lot happier, I don't feel like a zombie anymore...For the first time in about 10 months I'm starting to live again. My existence isn't from my bed, and I can kind of do things like a normal person again. I'm still processing the whole thing, and have come to realize that I've pretty-much lost a year. When the dysautonomia mess started, my life stopped but the rest of the world didn't. Now that I know what I need, and what works I'm looking forward to playing catch-up and joining the rest of the world. I'm really hoping this summer will be spent outside instead of in bed.

I get a lot of flack for how I've chosen to live with EDS and dysautonomia, but it's the right choice for me. We all have to find our own way of living with this and do what works for us. Getting the j-tube, using natural and Chinese medicine lets me be able to live my best possible life. I think the fact that I'm not on any medication at all and thriving (considering) with these conditions is a testament to how vital this approach is for me.

What goes into my fluids concoction?
- Ground up sea-salt
- Natural electrolyte mix
- Just plain tap water

I also eat potato chips every day. They're gluten-free, contains carbs and salt, which is key.

It's nice to finally have something work out when everything else has been hell. Just recently, I put myself out to the universe and started asking for help. Since then, there have been some really incredible, humbling things taking place and I'm so thankful for it all. There are no words to describe it...

One cool thing that happened, is a friend bought me a package for 5 massage & hydrotherapy treatments. She knows that floating in warm water is the best thing for pain relief and one of my favourite things. The heat helps relax my muscles and sore joints, and floating means there's no gravity....when there's no gravity, I don't dislocate or sublux anything and my body stays together. When I'm floating and am not in any pain, I completely relax, and think about nothing. It's essentially like meditation for me. I have other bendy friends who speak the same about hot-tubs and floating...We're going to start our own religion where all you have to do is float. Mmmmmmm

Want to float too? Anyone can join our religion...

I was so relaxed and off in Nakki-land, I had no idea anyone took this until I saw it posted on Facebook.

If only I could find a way to avoid tape-rash all together. One day....

Here are some video's I made for another project and to raise more EDS and dysautonomia awareness/understanding.

Thank you for reading my crazy rants and other nonsense. I hope it offers encouragement to find what works for you, and gives hope that you'll find your way through all of this. I know I have, and I never thought it would be possible. Keep your chin up, and keep moving forward.

"Creativity is inventing, experimenting, growing, taking risks, breaking rules, making mistakes and having fun"
(Mary Lou Cook)


  1. Thank you for writing this blog. I have EDS as well (diagnosed 2 years ago) and I find it comforting to know that there is someone out there who understands what is like to have this life-altering condition. I wish you the very best and hope that you have happy days ahead.

  2. I'm glad things are going well! Continue kicking ass and taking names. :)


  3. YES! I am SO HAPPY to read this today! So happy that you are finally catching a break! I'm not sure I've ever been so excited for someone I've never met before. Hope things keep going your way, love! :)

  4. I can't wipe the smile off my face anytime I think about how much better I'm feeling, and now I have enough energy to do a happy-dance about it too! Thanks for the juju xx

  5. Thank you for sharing.
    Positive chi