Thursday, October 28, 2010

EDS + unnecessary night at the hospital ='s hell.

Well, I have to say this has probably been one of the longest nights of my life. Yesterday, I was suppose to be admitted around 12:00 to hang out until this afternoon until my surgery. Why? Who knows, I'm still trying to figure that one out. My friend and I got to the hospital on time and were told that there wasn't a bed ready yet. They told us it would be a couple hours, luckily my friend lives down the street so we ended up going to hers. Two more hours passed and they still didn't have a bed. We said screw it, and decided to go out and enjoy the beautiful warm sunny weather and ended up hanging out in Chinatown while we waited. I'd take that any day over sitting for hours in a waiting room. We both ended up with fun accessories before there was a bed ready. I got admitted and everything in place.They did some blood work and got a line started, then the resident came to check things out and find out more about me. She was fabulous, much better than the GI specialist who isn't too keen on listening to me and asking my opinion of things. I was able to eat the food I brought and just made myself comfortable for the night.

That's when it all went down hill. I wasn't allowed to take my supplements because they don't know enough about them to know if there will be drug interactions or anything else. Wonderful. That left me screwed. The stuff I take helps with pain, insomnia, anxiety, muscle cramps and just about everything else. Hospital pillows suck. They're thin, covered in plastic and filled with air. Not what someone with EDS needs. There were a million nurses in and out of the room (which is no problem, they're doing their job) but when sleep helps with pain control and you're not getting it, life isn't fun. Luckily, my night nurse kicked ass and managed to get me some Advil, ice packs, more pillows, fluids and did whatever she could to make things more comfortable. She also took the time to understand EDS in all of it's glory.

I ended up having a meltdown at one point. I was so tired, sore and frustrated that I was stuck in a place that was suppose to be taking care of me, but it was the complete opposite. If I were home, I would have been comfortable, in far less pain and probably would have slept pretty well. I'm essentially running on a nap, so the anesthesia is lookin' pretty good right now.

The tube is suppose to go in this afternoon. I'm not on any food or liquid restrictions, WTF? I haven't had anything to eat or drink since midnight last night and plan to keep it that way. I think someone forgot to write a few things down. How is it that I'm restricted for a gastroscophy but not a gj-tube placement?

The need to self-advocate never ends, but I'm okay with it if it means better care.

I ended up back in the ER the other day for dysautonomia, I managed to make it a month between visits so kind of proud...much better than the 3 times in 2 weeks last month. After the first time, I e-mailed the patient relations department with a link to my blog about how awesome the ER team was. Last week they let me know they sent the link to the ER department, which was pretty cool. The doctor who treated me this time, recognized me from my blog. Yep, he read it and I got to tell him what I needed, not the other way around...Epic Win!

"So you have Elhers....I don't know how to say it Syndrome and Dys-what?"
(Pretty much everyone who's taking care of me here)

1 comment:

  1. You are doing AWESOME :) You forgot to mention how everyone at the hospital thinks we are sisters!! :) :) sista from another mother! :)