Sunday, May 29, 2011

When you can't tell if it's a side-effect, or a dysautonomia crash and it scares the shit out of you.

As you can tell, it's been a blast and I've had the time of my life.

With the Zofran I only ended up with all the side effects, and no relief.
It messed up my skin and turned me into a bleeder, everything seemed so fragile.
Jerome 2.0 had finally healed and the burn on my butt was coming along. I started the Zofran, and my skin was not happy. I ended up with friction rashes from my clothes, heat rash, peeling skin on my hands, scrapes in my mouth and on my tongue from food that was "sharp", and Jerome opened up again. My skin also didn't want to tolerate IV's for more than a day at a time. There was other stuff going as well, but I don't want to get into it. Now, my skin is healing from all of it. When I was at Chateau Sinai in January, on the 2nd day my skin from the entire bottom of both feet peeled off in the shower, gross I know. It seems as though my skin hates GI meds.

Anyway, my quality of life sucked, and with symptoms being gross in a normal person; with ESD everything is so much worse on top of what we already have to deal with. For example the rate of healing is 6x's slower, and the rate of infection is 6x's higher. No to mention an incredibly low success rate with pharmaceuticals, and just about everything else. So on day 4, I decided to scrap the Zophran plan. We do have a couple other drugs that can be tried, but their side effects are more brutal. I've already tried the top 3 without success, and pretty much everything in between. This is the girl who's been taking stuff for reflux since age 11, slowly knocking them off of the list because they stop working.

For now I'm still feeling the same, and trying not to get discouraged...but am getting a little bit of respite here and there. The rest of my body is okay, my joints aren't happy but it's hurting Jerome to put them all back and I really want it to heal. I guess you should also know that my body is tolerating alcohol much better than food and fluids. I have NO idea why. I said "eff it" and went to a bendy party where vodka was my friend. I figured since I wasn't feeling any better, I might as well make it worth it so J had a few drinks. To think of it, I've never refluxed on it. Hmmmmm.

Then I tried the Scopolamine patch . It was a complete disaster, I only had the side-effects and no relief. Surprise!!!! It ended up being really scary because I thought I was having a bad dysautonomia crash, and was very close to calling an ambulance. I've never had to do that, and have never felt that shitty before.

Drowsiness, confusion and disorientation hit me pretty hard. I felt like I was in a constant state of coming out of sleep paralysis and really had to fight to stay conscious and oriented. I have sleep paralysis all the time, but I couldn't come out of it no matter what I did. I was also really shaky and weak.

Dry mouth was horrible, no matter what I drank, how much fluids I put through J, or how many tic-tacs, lollipops I consumed, I had insane pasties. It also made my secretions really thick and I was constantly choking on it. It wasn't just dry mouth, it went all the way down my throat and esophagus. I thought I had food stuck in there and nothing made it go away.

Blurred vision and dilated pupils were interesting. I woke up, and couldn't see in front of me. Everything was so blurry, I was seeing double and my depth perception sucked. I was really light sensitive and had a hard time looking at anything. The dark was my best friend. I had the brilliant idea to decorate my new neck brace with Sharpie markers, it looks horrible hahaha.

I was retaining fluids like it was nobody's business. I think I finally had to pee after 2L of fluids concoction...yeah a bladder isn't suppose to hold that much but I'm stretchable...

The spins and blood-pressure drops were insane. I had a really hard time going from laying to sitting, or sitting to standing. As soon as I did any of that my BP would drop, I'd black-out, sometimes fall, and was really dizzy. Then the tachycardia would start and I'd get really bad pain in my brain as my body was trying to get the blood back. Then I ended up with a killer migraine. I crawled everywhere I went, because getting up was so difficult.

All of those were side effects, but they present exactly like a dysautonomia crash and some of them like a neuro issue. Since EDSers are prone to blood-vessel rupture and all kinds of crazy neuro things, I didn't know what to think and was scared shit-less. When you've seen your bendy/dysautonomia friends go into complete autonomic failure ending up on life-support, or dying from ruptures, it doesn't take much to shake you up. I had 3 days of that fun stuff, and I never want to do it again. It's a good thing I woke up today feeling better, otherwise I would have gone to the ER.

As for the GI stuff, it's still all the same. Constant reflux, upset stomach and if I'm lucky I can get food to stay down. So it's looking like it's back to the drawing board, however I think taking a break from the pharmaceuticals would be a good idea right now. We've pretty much tried everything, and I'm tired of feeling extra-gross, it doesn't do anything for my quality of life. How strange is it that I actually get excited for surgery, that fundo can't come soon enough! First we have to find someone to do it, haha.

"Jerome just probably needs some more vodka."
(Bendy friend Tiffany)

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