Wednesday, January 19, 2011

Feeding pumps, the bane of my existence...

I used to say that any kind of tape that held my body together was the bane of my existence, not anymore....It's the Kangaroo pump. At the hospital, we worked it out that I'd need to be hooked up for about 12-14 hours during the day. I managed to find a way to get it down to 9 hours, but it's a huge pain in the butt. I'm trying to get enough money together, so I can get a portable one and be able to live almost normally-ish.

One of the doctors at the hospital fed me the classic line "You'll just have to find a way to adapt your life to it." Yeah, if she only knew that I'm constantly giving things up, and having to adapt to live with a body like this. It's exhausting in every possible way, and this girl never really cries...That day, I was a wreck. I'm pretty sure it was from the combination of being sick for so long, not being able to eat anything they gave me, having really bad cabin fever, crazy hormones and the obvious; being wrapping my head around life with a pump. It's amazing that if you phrase something differently, it won't seem as though the world has ended. I think she could have used "You'll have to find a way to adapt it to your life." Cause' I'll be damned if I'm going to adapt my life to a machine...

When I got home, I realized that not only would I have to give up most of the spontanatiety I had (not that there was much) but I'd have to give up more....It seems rather silly, and petty but I realized that with the pump, I'd have to give up wearing 1 piece dresses. Not a big deal, I know. But it's one more thing that's been taken off the already tiny, still shrinking "Can do" list. I guess the biggest thing that's been knocked off that list has been my almost inability to really eat. I love food, there's no way around it. When you can't chew properly, choke and reflux like it's nobody's business, food stops being your friend. I mostly consume carbs, which is awesome to be able to say,but I miss everything else. Not being a picky eater does have it's disadvantages when you can't eat, and are willing to try anything at least once. Giving things up means loss of control over my body and most things in my life. I know it's unrealistic to be able to control such things, but to have a sense of power over your body is always nice.

I'm trying to use the pump as much as possible but I really hate it. The constant humming and alarms going off isn't healthy for anyone's sanity. So I'm still kicking it old school, and using gravity to get what I need. When it's not enough , I feel a bit symptomatic of the usual dysautonomia, but I can't do the full 9hrs yet. I started this post without having enough fluids in me. I know this because I felt gross and as I've been editing this post, my writing has been atrocious. I was writing in both first and third person, had awful grammar and huge chunks of it were nonsensical. Now that I've been pumping fluids into me, I'm feeling much more human and almost good. Funny how that works.

Today was a small victory of sorts as I was at Awesome GP's, and hooked up to the pump there. I also managed to take it on the subway with me, still hooked up. I only set of the alarm a hundred times, but hopefully I will perfect it, and have it become my new normal. Luckily, it's been fine at work and Monkey thinks it's the greatest thing ever. He was always eager to help put "food" through Jerome when I was using the syringes, so a machine is even more exciting in his eyes. What science minded kid doesn't like buttons, tubing and pumps that connect to a bionic-like intestine ?

Awesome GP brought up a very good point today, he wanted to know what the hospital had as a back-up plan if using the pump became ineffective. There is no plan, so this pump thing better work. I'm also not willing to give anything else up or spend more time in the hospital. One can wish right ?

The one constant in all of this mess has been the incredible support and juju coming from friends. I was lucky enough to have at least two visitors each day, friends bringing me food that I wanted to eat and things to keep me occupied & happy. And, I had a friend offer to help me find and make tube/pump friendly dresses. What more could a girl need in life? I am very thankful.

Before I forget, I got accepted to school and will be starting shortly :)
That news came while I was in the hospital, it was nice to have something to work towards. As I have to come to realize the universe has my back; anytime one door had closed and something had to be given up, an even better thing came along. It's not ever what I had envisioned, but there has always been a workable or brilliant solution with it all. These things just don't always appear, they are a result of hard work and choosing to find a way. Plan "C" is in full force, I'm taking a huge leap of faith, but am hell bent on making it happen my way. That's plan "C" for work and schooling. I'm on plan "E" for staying out of the hospital....Just like I said, not what I had ever envisioned, but sometimes just as awesome. More to come on that later.

When Monkey came to visit, my sanity was restored for a while. Nothin' like drawing roosters with jet-packs and green mo-hawks, sword fights with pool-noodles and testing the mechanics of the bed 50 million times to get some fun in an otherwise yucky situation. Oh, and another 50 million questions about how an IV pump works.

This is how you bling-up an IV pump with juju. Notice the amount of fluids I was getting, 100ml/hr...that was before I was getting enough, and at my sickest...So glad they listened and gave me more.

When you're bored out of your tree, and can't do much of anything..."Dear: Jerome, WTF is going on with you?! Smarten up!"

That's right, everyone had to read this before they really even spoke to me. Then they got a lollipop after they complied :) Not only was there more EDS awareness out there, I created lollipop addicts and am proud of it.

It was so nice to be able to stick my nose in my favourite flowers, from a fantastic person, take a big-giant sniff and forget I was in a hospital for a while. The acu-ball helps with so many different kinds of pain. The Buddha book helped me put my head back where I like it when things got crazy.

1.5 weeks later, still lookin' like a junkie. I was pretty dehydrated when I was admitted. It took them 6 attempts to find a suitable vein that wasn't on a joint to get an IV in. They were awesome about it, and wouldn't poke me more than two times before getting someone else to try.

My latest invention in the fight with dysautonomia. That night, I had enough of dealing with pumps and refused to have it going in my little sanctuary. I wanted to read in my bed, without any noise coming from medical equipment. So I made use of the stuff that could no longer be used for their intended purpose, and got to read in peace and get hydrated at the same time.

"If you're going through hell, keep going." (Winston Churchill)

1 comment:

  1. Adding my good juju to the mix! You've been in my thoughts, Flexi-girl.