We all know how EDS works, with the only constant being change.
Today, I took it upon myself to change it up on EDS, which will hopefully keep me out of the ER for longer periods of time.
My Facebook status consisted of this:
3 syringes 60cc $8.25
2 rolls of paper-tape $4.50
2 rolls of Coban wrap $9.90
1 Kangaroo pump set $16.95
5 Tegaderm patches $33.95
Staying out of the ER and kicking EDS's ass: Priceless.
I have to say that the Kangaroo via gravity for fluids is amazing. Part of the problem before, was that if my hands were being horrible, using syringes to pump enough into Jerome wasn't ideal. The Kangaroo does it all for me. I made my own mix of electrolyte minerals, sea salt and just tap water. I threw it in the Kangaroo and let gravity do the work. I got in 1L of my concoction in 15 minutes through Jerome. I had to pee like it was nobody's business after, but that happens when I make an ER trip anyway. I can hang the bag from pretty much anywhere and the tubing is long enough that I can walk around my room or lay in bed. This means, I'll be able to bring it with me when I go camping and hang it from a tree. The possibilities are endless.
Since Jerome is taking his sweet time healing, I still have a stoma. I got the Tegaderm patches because they're water-proof and will protect J from all the mingin' bacteria when I go hot-tubbing. I will gladly take epic-tape rash if I means the amazing pain relief I get from floating in hot water, there's nothing like it. The Coban wrap was surprisingly cheap but the largest they had was 3.5", so we'll see how it works. I'm planning on using it after the Tegaderm and giving my skin a chance to heal. I'm not holding my breath, but who knows it could be fantastic.
For those of you who are curious what Jerome eats, it consists of two things. I use a vegan whole food formula (meal enhancer drink). One serving contains all of the recommended daily vitamins and then some; with the Omega's, protein and everything good. It's called Vega, and I love it. It also does not contain a lot of the common allergens, sugars or chemical grossness that are found in other g-tube friendly formulas. http://myvega.com/products/whole-food-health-optimizer/features-benefits
The other stuff Jerome eats is a greens mix. That's what I started out with before I got J, to ensure I got all my vitamins and some carbs in when eating wasn't an option. I will say that the berry flavour used to enhance it, probably makes it taste more disgusting. Even the smell of it makes me gag, but that could be attributed to being sick while I was trying to choke it down and stay out of the hospital. Either way, it's vitamins and it comes in a big container like the Vega, or individual packages (which I use) so I can have access to "food" anytime, anywhere. The only down-fall, is that it doesn't do much for reducing my carbon foot print.
A lot of people have been telling me I'm looking better, and have my colour back. I guess I'm doing something right. I still get a good laugh when people find out that I've got Jerome and I'm sick with two things that don't have a treatment or cure. Then, I get the classic line we have all heard a million times,"But you don't look sick". That's when I throw in a "Surprise!" because there's nothing else one can really say.
As I was digging myself out of my latest epic funk ,and just started being interested in life again EDS had other plans for more than one of us. Last week one of our bendy friends Maria died. Thanks EDS. I never thought in a million years, that I'd be part of a club that included having to say goodbye to some really amazing, beautiful, people living as best they could; despite this monster. Every time a bendy friend looses their life to this crap, it's a slap in the face and a reminder that we need to value every moment we have. Even if diagnostically, we're not meant to leave this earth early.
Pretty awesome toque eh? Yes, I just said the words toque and eh in the same sentence,stereotypically Canadian. My bendy friend Christie gave it to me when I got Jerome put in. We put it on my IV pole, my fluids and meds looked pretty bad-ass!
So to all my bendy friends: Fight like hell, and then fight some more. Not that we really have a choice, but we can choose to make it work for us. See something for what it could be, try your damndest to make it happen, and turn it into something that is.
What doesn't kill you....
6 months ago