a day off, medication acquired… and Questions on Brain surgery


Todays been pretty nice for me … other than the chomping tic… Have I mentioned the chomping/chattering tic lately?

I hate that thing…

I’ve been so hard on my teeth because of my motor tics that I broke a filling! I’m so upset, well… not really. I say that and start to crank myself up and then it’s a big freak out. I can’t afford to have a big freak out. I still have to carry on. I’m glad I have Valium so I can take it when I get home from work and Bunny can take me to the dentist. So, assuming I don’t sleep the whole afternoon away (not like Valium even makes me tired anymore) … you’ll either hear how well it went, or how bad it went… I’m going to guess for well. 

And Today I was asked about my feelings on DBS. For all of you who don’t know what it is… that the surgery that has shown promising results for Dystonia, OCD, Depression and Tourette’s. A long time ago I told my friend Sara that I’d never have it … That it was too dangerous… too risky… well, now that I think about it I said that like… in  the summer…this summer. I thought that  if they can manage this for me with just the medication why would I want to try for that. My mom begged me never to go for it either, she told me her little voice said not to do it … and I trust her little voice. There’s just so much that could go wrong… and infection… and disappointing. What if it doesn’t work… what if it isn’t the answer I needed it to be? What about the dangers to my personality. The whole process sounds like it scares me… it’s not a promise fix, there’s no promise that it will work. I’ve seen too many people who’ve not had positive results, or even were worse off than they were before. 

Those things are always on my mind … but… I’ve started working again… I’ve had a breakdown, my body and my mind are not what they were before that event… 

I thought about my reasons for why I’d even look into DBS … why I’d want to go for that magical consult with the doctors up in New York City to see what they’d have to tell me.

 I’d want to walk without crutches or a wheelchair, I never had to use them as a young girl even though there were times when I probably should have … I want to be able to go out alone and not have to be terrified of having an attack and ending up on the floor looking like a grand mal seizure anywhere. I’d like to not have the stares, the looks, the questions … I mean the ones I give the people who I feel are looking at me. I always have this paranoia about that. I can’t control other people, I can only control the way I feel towards them … and I feel like the eye of Mordor is staring down at me when I cant control it alone… speaking of alone…

I’d like to go out alone, drive alone, be alone and not be constantly on edge… or in pain… I’d like to have anonominity.  I’d like the fear of tics to be out of my life… I’d like the trauma of suppression to be taken away from me … I’d like to be able to not wake my husband up in the middle of the night because my tics are so severe…. I’d like to not be scared my body is going to fail me. 

I’d like to go to work and not have constant motor or vocal tics (or both at the same time) and scaring my coworkers with them, or echoing the residents, or everyone else making odd noises… I want to not constantly be cutting myself because of my tics… I’d like to have the anonymity of being “neurotypical” even if its for a few minutes… even if I’d be ticcing, or contorting… I’d be able to fool a few people sometimes… I’d like to not be scared of attacks at work, have to make contingency plans for where I can go in-case of an attack, or a trigger… I could just have ‘tics’ not this monster inside me 

I’d like to hope that my OCD could be better controlled because I wouldn’t have to worry about the medications making my tics worse…. oh, I’d like to not have to worry about interactions … I’d love to be able to drink alcohol at a party, or not pass out  during the afternoon because i have to take medication so much at such doses that my body has all these side effects that cause me to sleep constantly…

I’ve had so many concussions, I’ve broken so many bones because of this, The most recent was January when I fractured my Tibia and broke my ankle. It’s never healed right.

… I’ve lost friends, hurt family, and really feel like all of my dreams have died… leaving me with a shell of a life that has me working a job that has nothing to do with my education, or my desires, my hopes, my prayers or… my deepest dream. I had to leave a school I wanted to be at because of my tics and my OCD and my …my stupid body… and my own fears…

 …. but, I am thankful that I do have a job… and it was found for me by the Office of Vocational Rehab because of the amount acceptance for hiring disabled people … I want to feel differently Abeled, not disabled… I am thankful for my mom who supports and helps me … and happy that I have a wonderful husband and because of all his years as a CNA knows how to take care of me, and beyond that loves me and keeps me for who and what I am. 

 

it’s all a way of thinking … it’s a way of perspective…I know this is a fleeting moment of insanity where I dream about finding some magic bullet that would take this crap away. There is no such thing. I am just having DBS envy the same way I did over tamagotchi’s when I was a girl… or someones new car, or house that that I’m grown (not that the hot pink tamagotichi wasn’t totally the shit). I know, tomorrow, when I’m not so locked into being supportive for others who need this more than I do … and I get my green eyed monster under control I will see how silly it is for me to want something like that instead of feeling gratitude for all the things I can do, and will always be able to do.  

 

So.. my goal tonight is to stay up to watch Top Gear US… and make sure I wake up in enough time to get off to work early and get home for the valium to kick in, and get to the dentist in time. 

I dreamed a dream… and it was flipping twisted


So, I don’t normally remember my dreams… in theory I =have= to dream because I sleep…. but normally I have no idea what gets left behind. Except… a few days ago, and it keeps coming back to bother me. 

 

I’m in the car… and we’re driving towards my moms from Clinton but everything around us is on fire. It looks like the scene from Sonic 3 after you fight Fire Breath? 

Image

 

But, New Jersey…we were heading to her house … and everything around us was flames…So, when we went to my parents house for the Old Mans birthday on the 25th, I actually couldn’t have Davis drive that way to get to their house… I was so freaked out. I kinda thought it was like what nuclear war would look like or something… I don’t know. It freaked me out. I’ve been too lazy to go and get my dream dictionary and see what it has to say about that. Part of me doesn’t want to know, just because it’s always something so benign and like (why was I worried about it?! or scared by it?!) 

I think it’s just the idea of doom about having to go see the old man for his birthday, I’ve still not recovered from the last fiasco with him where “bakers are a dime a dozen, why would I need you” … granted, he’s always been a dick…but STILL…

Imageyep, happy family right there

 

Wait… where was I? Oh yeah… A totally different topic! Like last nights picture showed I got my crutches!! I’m so excited to use them! So far they’re red… my chair was red too when I got it but we took care of THAT little problem… I think i’ll paint them to match my chair… I love that paint it’s amazing… and there’s always spray for plastic stuff too, or I could make a cover… the past few days my tics and stuff haven’t been too too bad… that’s been a perk… I think… it’s always weird when my med doses change again …even if its just a little adjustment it makes a big difference… like taking the Clonidine at 4-6 hours instead of 8… it’s back to doing the stupid charting of symptoms….seeing when it wears off… what I need to do about it… when to take a whole or a half… once that’s over it makes life easier…maybe. 

 

My optimism fails constantly. So, today is baking, beading and crutch dis-assembly and painting… photographic evidence to follow… and potentially more of my oddities and ramblings … 

 

Oh, and the lovely Margie has finally convinced me that I need to turn Confessions of a Girl into a real book … more information to follow…