Well, I never got back the other day about the whole fiasco from the neck down … and There’s also the issues with going to Twitch and Shout… or like, anywhere… Oh, and Disney’s new disabled policy… So I guess I need to start typing haha… get all this stuff out of my system!!!!!
…oh, snap… this Clonidine is really, really messing with me today… I took a little too much to try to make myself not tic and now I’ve spend the whole day either passing out… or having other problems. Sometimes it just has to happen, after a week off of it I know that I need it … and I know that it has to be helping me but I get so tired on it, and so lightheaded and so many other things … but it kept my ticcing to a minimum, well the motors at least. The vocals have sucked as usual but at least I’m not having the seizure looking things….yeah. I needed that today. I need it all the time, but I don’t want to constantly have to be popping pills. I can accept that someday, that I need to do it… but sometimes I just look at the pill box and feel sick looking at it… I feel sick and sad and sometimes it feels like i have to take poison knowing I need these things… just to have basic functioning…
I think I’m just going to my daily in reverse… because sometimes you just have to start backwards, right? right
Tuesday: Clonidine on board… got up to get Davis ready for work and then passed back out until almost 1! But… I heard from my mom … my father was being an absolute massive JERK again.. and pretty much ruined both of our days… Turns out my father is still BATshit CRAZY… he’s always been a bit of a stalker on me. This is old news, for people who’ve just met me … well, this is something that I’ve had to deal with for my whole life. I think it’s got to be one of the reasons that I’m so messed up emotionally. My father has this psychotic tendency to stalk me. Yes. You read that correctly. He’s insane like that. He’s hired plenty of private detectives to follow me around, break into my things… read anything private… or even stalk relationships that I’ve been in. Even when I was a young girl dating in high school. He told me that my boyfriend didn’t exist because when he hired a professional to get information on him he only found his REMARRIED mother and father…. but since they didn’t share his last name he didn’t exist… so then he called his parents to tell me that my boyfriend was actually a 56 year old man pretending to be a 16 year old boy. Yep… once again… you heard me correctly.
This isn’t me. or my fault. You could write books on shit my father has done to me. He’s only getting worse too. I’m 99% positive he’s got alcoholics dementia at this point too from all the drinking, his behavior makes me think it too. and it’s taken me over 20 years to learn that this is NOT me… NOT something i’ve done… This is HIM… but it was hard to learn that as a kid…now I just get angry about it…
So, I start getting messages today, and then my mom calls me and wakes my drugged out ass up to tell me that my father has stalked my Linked-In… and my Twitter… and my Bloody-flipping blog… He decided to point out all the things that are “wrong” with them and have a fit over my MARRIED surname, instead of using my maiden name. I’m sorry, old man, I’ve been married a pretty decent amount of time at this point. OF COURSE I’m using my married name. THAT’S -MY- NAME. then he made rude comments all over the place and spouted off to family that I don’t talk to and probably ruined my job…Everyone can see the Linked-in account and that I already announced my new job on there… so, he asks my mother all these questions about the place that I work … and had the name and other information that I’ve not handed out yet. Turns out he got them from stalking me again… then got shitty when there was no answers for him… when he had them… and that I’m so presumptuous for saying that I have a job… even though my only hold us is the PPD test. Why the heck cant he just TALK to me instead of just making trouble…Why is it so hard to like… pick up a telephone and talk if you have issues! Just have to always be right, always make trouble… it’s so shitty. and he’s making my mother insane too.
So, after spending most of my day on DAMAGE control… and getting strange voice-mails from him about it… none of which I returned…Davis ended up taking a chunk of the overdraft money we have and going to get a taco for my mental health. Now we’re home… all I’ve done today is check the mail, get my LISTIA auctions and like…. sleep… and my sickie swaps! I have the best swap buddies ever. They really made me feel better today.
Oh, and my neurologists office “yelled” at me today too… this was kinda funny… it went like this:
Nurse Gail: I put in for your refill, and do you remember your follow up for August
Me: What follow up for August?
Gail: Exactly, you didn’t schedule it….
me: oh crap…
Gail. I made you an appointment for November ____. I’d love to get you in sooner, but we just cant now… and you know you come every 3 months… what happened
me: my fish ate my reminder card?
Gail: LOL… actually, I can believe that.
Yesterday… well… I had a major tic fiasco in the Walmart… that was pretty epic. I had a blood curdling scream so loud the whole store pretty much went silent and looked around to see where it came from. Oh, and I was copying all the other little children that were making funny noises too… and the machinery. So glad Davis was there with me. He knows how to do something with the back of my neck to get it to mellow out temporally. That was kinda funny in a sick way…so, I shrieked my way around the Walmart with Davis. He said that I really needed to get out of the house. When my movements start getting really, really bad then I try not to leave… I just hide in the house until …well… forever…so he took me out, we got drugs and did a few other things. It was really sweet of him. I love this man. I called to make a makeup appointment too so I can learn how to do it with my hands all bad and shaking… OH, and I got my coupons for TruMoo from Bzzagent, and I got all my Curel things from them too. Can’t wait to use them. I have to do blog posts for the campaign! So… there’s going to be some pointless advertising!
Oh, and no… I’m not mad at Disney… but I am very mad at all the people who destroyed the chance of doing to Disney for people like me. It’s bad enough having to live with this every day, but as much as I would ADORE to go to the magic kingdom now that I’m an adult… the idea that I’d not be able to do anything or enjoy myself because my ocd and anxiety would be too bad… and then there’s the paranoia… and the panic. Davis and I were talking that because of all my issues the only real way to go anywhere is for us to get our own camper… and that way I can make sure its set up and safe and prepared the way I need it to be… so I have the sense of security that I desperately need in order to enjoy anything. I want to go to camp Twitch and Shout… but i cant be anywhere without a safe zone… its impossible… it’s so frustrating to not be able to go and stay in a hotel or anything else…. because of the hygiene and the bathroom and the pillows and nothing makes it better. I just… i just cant do it. and no amount of medication can help me… i wish i was normal sometimes… like… a neurotypical so I can see what kind of life I would have and places that I could be…
And… and now onto the whole fiasco I said I was going to post about yesterday… but I ended up… spending the whole day not wanting to post, and trying to process the whole thing… and really just feeling sorry for myself and eating crap to make myself feel better for the fact that my body doesn’t do most of what I want it to do. This is how I ended up with the “Whats going on from your neck down”
I’m at the store … I can’t remember what one now… but I was in my wheelchair talking about either a ring I needed sized, or a makeup product I was interested in and I’m making small talk with the lady working when from out of nowhere I hear blurted AT ME “And WHAT IS going on from your neck down?” I’m useto people staring at me. That’s not a problem … my problem is that usually people are at least too shy to say something, or if they do it’s not like … like THAT… so the only thing out of my mouth is a smart ass comment. “Awesome, THAT is what i’m doing from my neck down… being AWESOME”. And then I had to politely excuse myself. I really was like … fuck the ignorance. I’m not a teacher… I don’t care about “advocacy” anymore. I just want people to shut up and leave me alone. I’m in a wheelchair for GODS SAKE… I have a movement problem and so many other issues so why do you have to so RUDLY come up to me like I’m not even a person and ask something like THAT?!
It just makes you look like an idiot. It makes me understand why other countries think so poorly about Americans! Rude as hell. OH, and feel free to slam the door in my face too! I really appreciate that… That’s so awesome. and PLEASE don’t touch me… and if you offer to “help” me and I say no… DON’T TOUCH ME. I had my PA-works-for-me backpack on my chair and I can get it off to put what I needed in there myself … PLEASE DON’T TOUCH THE BAG… i said no. that’s my purse today. would you touch a random woman’s purse. do why do you think that this would be ok??
and with that… I was up too late yesterday… now I slept most of the day so i’m awake now but I should go to bed… or not. Whatever. Davis is off tomorrow so we have a day together AND I know I’m getting my EUC check 😀 it’ll be nice to be LESS poor. we =should= go over to my parents tomorrow for the old mans birthday and have cake… but after the recent performances… we’ll see…