Friday, January 7, 2011

No room at the Mt.Sinai inn. What a joke. Still feeling ass-tastic.

Photo by: Angela Perry

All of those Dysautonomia and Jerome issues I was having didn't really resolve and instead just ended up getting worse. I'm still feeling really gross and vomiting when I put anything through J, especially first thing in the day and have reflux up to my ears, literally. The adrenaline rushes that were lasting until 5am every day were followed by almost constant tachycardia and low BP. I exhausted all of my options at home but was still trying to ride it out. For the life of me, I can't figure out how the hell I manage to vomit the exact same thing that I put directly into my small intestine? It doesn't make sense (not that EDS or dysautonomia do) and should physiologically not be able to happen at all.

I was at Awesome GP's today for him to fill out some paper-work for school, and to see what he thought of the J situation. He had been reading my blog, and asked around seeing what his colleagues thought of the whole thing. He thought pretty much the same, in that the Fundo is do-able but finding someone to actually do it would be next to impossible, and that considering EDS and all the other fun I have, it wouldn't be a good idea. But in theory it would work, thanks EDS.

I had been feeling gross with dysautonomia and we were talking about that too. He asked what I thought about it all.Last night, the thought did cross my mind, to get admitted to the hospital in order to get all the Jerome and dysautonomia stuff sorted out. I shouldn't forget to say that I had been calling the GI specialists' and have not got a response yet. Today instinct told me it was a good idea to get admitted and Awesome GP agreed, he was also lost for answers and wanted me to fight hard if necessary to get in. It would have been insane if they didn't take me.

He was nice enough to draft up a letter that consisted of something like this:
"This letter is to certify that (blankity-blank-blank) has been unable to keep down fluids for almost 2 weeks. She is Ehlers Danlos Syndrome. She has recently had a J-Tube inserted but has been unable to put fluids through without emesis. In clinic today she presents with hypotension, tachycardia, and as such I think she warrants admission to reesestablish fluid status but to also further investigate her J-Tube digestion issues."

So I went home, to pack for a few days at hotel Mt.Sinai. On yeah, on the way home I realized that one of my AFO's broke. Awesome. When I got J put in, the hospital was not at all equipped to handle me, and everything that helps me is here. I was scared shitless at the idea of another stay there, as last time was horrible. I still have to finish writing about that big mess.

I got to the ER with my bags, the letter, my past-reports and some EDS/dysautonomia reading.
I had the most fantastic triage nurse who was also awesome enough to joke around with me about EDS. I'm glad other people can see the humor and make light of it. I was still tachycardic and had low BP. She went to put an IV in, but had a hard time finding a vein that wasn't on a joint or in my hands that could be used. The dehydration didn't really help things either. She asked one of the other nurses for help, who ended up knowing me. And that IV got put in no problem! I still laugh at the fact that a most of them know me now...

When I got a bed, they were really quick. I saw the doctor right away. He kind of listened and ordered x-rays to see if Jerome was blocked, and I got some anti-nauseants. The x-rays came back negative and I was sent home. I still felt like ass and nothing got solved. Since he didn't know what the problem was and it wasn't am emergency, I couldn't stay. Awesome eh?

I did find the idea of hanging out in the ER for a really long time difficult. The usual time isn't a huge problem but this would have been longer if I were to have been admitted. There was a guy who was loosing his mind because he wanted Oxycontin, and a poor old lady who was really upset, but didn't have any functional communication. I wanted to sit with her, and hold her hand, but wasn't allowed. I'm sure screaming guy didn't help her feel any more safe...geese.

I mentioned again that I have dysphagia and choke on EVERYTHING, need lots and lots of fluids to keep the dysautonomia at bay, and that the J-tube problem was still there. I put most things through the tube!! What was I suppose to do? This is the answer I got... "Take little sips of water to keep you hydrated, and see your GI specialist." Holy negligence Batman!! Did he forget that I have dysphagia and that I've had aspiration pneumoina? So this drinking sips business, how is that more safe than getting fluids through an IV, for both dysautonomia and dysphagia?

My blood-work came back normal, which is no surprise at all considering I have dysautonomia. I told the doctor that almost all tests come back negative, but that doesn't mean that something isn't happening, it's dysautonomia. He wasn't buying it. Oh, I also got a prescription for some more anti-nauseants. Yeah, because that was going to fix everything...holy band-aid solution Robin!

I left very livid, but too tired to fight. These last three weeks have been nothing but fighting with Jerome, dysautonomia, and what EDS has taken away. I'm exhausted in every.possible.way. Yesterday, I officially took a break from being "tough stuff" which is one of my nick-names. I am so tired, need to just "be" and maybe break some plates for fun. Finger-painting, and breaking shit is the best therapy ever!

So, I'm currently sitting in bed finishing off this post, still feeling like complete ass. I managed to eat and drink for the first time in 24hrs, and yes I did choke a bunch of times. Yes, I still feel barfy and yes, I'm going to still try to feed Jerome. I don't really have any other choices except the hospital,but there's no room at the inn for this girl. At least not tonight. Really, do I have to crash hard enough to come in by ambulance to get this stuff sorted with out negligence? So, this weekend will be spent in bed. Wonderful. I'll be back there soon enough, it's not like it will magically get better on it's own, although that would be pretty incredible.

" I would like to point out that Stan Lee's new TV show would classify us with Ehlers Danlos as Superhuman. We would be Mr.Fantastic, I checked it out."
(A bendy friend)


  1. A lot of times doctors will do a "direct admit" from the clinic/office with patients at the hospital I work at, which bypasses the whole ER process... Not sure if thats an option where you live.

    I'd be curious about the results of a gastric emptying scan when you feed jerome.. or some such test to visually see what is going on.. Obviously the sphincters all along the way arn't doing their job in the slightest.

    ....if the fluid thing continues to be such an issue, what about a PICC line and IV Fluids at home you can do yourself? Course your still having the whole, nutrition-emesis issues but it may help the fluid side/dysautonomia of things at least... (esp if that is all that the ER seems to do for you anyway).

    Sorry your having such troubles with everything, that GI specialist office needs to get their act together and follow up dangit! I hope you get some answers soon!

  2. I love the idea of doing my own IV's at home, and have been curious if that would be a possibility. I also wasn't sure why they just did an x-ray and didn't follow-up with more tests. Thanks for the heads up, and the juju. :)