adventures in compassionate conservatism, mental hospitals and crutches


While I was in the car today on the way over to Building 5 to get my PPD read there was a commercial on the radio… I actually had to pull over by the signal because I was so struck dumb. So, NTs and nots, I quote in true MOVIEFONE guy voice, flashlight held up to my face…

“Several mental patients have escaped the state hospital. They are rumored to be hiding in an abandoned barn. Local residents have been reported missing. Neighbors of the barn have heard strange noises near the barn and believe people are being tortured there.”

:: clears throat… followed by gagging noise::

Are you fucking kidding me?!

Seriously…

No, really?! If I bang my head on the steering wheel do you think anyone driving by will notice?

I did it,

I seriously did it.

I sat there, hands at “10 n’ 2” banging my head on the wheel until I realized that I made the mistake of listening to the local pop station, which is now owned by I<3Radio…and I usually only listen to my IPOD because I can’t stand the idea of loosing any more brain cells than necessary… (how many times can anyone hear “blurred lines” anyway)

THIS IS PART OF THE PROBLEM

How do this this that this is ok?! How can you joke about that. I AM ONE OF THOSE MENTAL PATIENTS. my FRIENDS are those ‘mental patients’ … my LOVED ONES…. my BROTHERS AND SISTERS… my soul family. For Profit some STUPID, seasonal, neurotypical owned haunted attraction is going to once again stigmatize and stereotype anyone and everyone who suffers from a mental/neurological/emotional disorder.  I can’t fight every battle, I can’t take this to the streets and make people not go… I understand the power of the dollar and how many people enjoy the idea of being scared out of their shorts one month a year by a bunch of costumed assholes jumping out of doorways.

But it makes me sick… it makes me sick that the suffering of my brothers, my sisters is a joke … is a money making scheme… that will only continue to make the lives of the mentally ill community even harder. This is NOT a joke… people suffer, people die… people are ignored, isolated, broken all the way from their bodies and spirits because of things like this and what it causes the rest of the world to do. By treating all of us like escaped criminals how will anything EVER get better… it wont.

it wont. in my life time, it won’t. I don’t know if it will ever have a change unless there’s a way to cure Neurodiversity and make everyone Neurotypical we will always be the persecuted group… the joke… the laughing stock… the people who are belittled and live in silence because the majority are going to think we’re all loose cannons …

GUESS WHAT NEUROTYPICALS… WE’RE MORE LIKELY TO OFF OURSELVES BECAUSE OF YOUR BAD BEHAVIOR than we would hurt any of you lot

ok, time for a few deep breaths… and NO, I still don’t have Tuberculosis…not in my left or right arms. and I can’t say that if someone could take a way MOST of my issues I’d tell them no, because there are parts of my problems that I’d get rid of in a heart beat… but, for the most part… I value my neurodiversity… I value the perspective it gives me on life, the universe, and everything and I think that it’s something that’s helped me… when it’s not getting in my way, breaking my heard, or causing me to run away because of my constant feelings of inferiority… or when its causing me to overdraw my bank account to pay for my medications… or doctor bills… or emergency room trips… or nightmares… or …

oh hell, this whole thing sucks.

wait… I know something else I wanted to talk about… something that’s a bit off topic, but talking about my neurological  shortcomings, differences and emotional issues….

I hate those god damn, yard inflatables…You know what I mean? Those stupid, parachute noisy yard hogs that no one can seem to just have ONE of?!

they seriously cause me rage… I hate them…

so, of course my lovely husband had to buy one of them last year… I  (not-so) secretly hope it gets stolen, or blows away in a hurricane… but, since I have like … nothing better to do until I have orientation at work on the 2nd in the morning, meeting at St. Anne’s for CPE in the afternoon… and my mom is coming over tomorrow… and bread baking, house cleaning… and, not to mention being SO FAR OVERDRAWN I not only could throw up, but have the trots at the same time.

OH…but about the yard stufties….

ImageImageI now have one… and it’s still there… no one popped it or stole it… We’ll see what happens in the coming month…Oh…and if the government shuts down…that means NIH will have their research destroyed…and since movement disorder and psychological disorder aren’t considered critical… we’ll be worse off…and I won’t get my EUC…No matter what, I’ll always be a compassionate Conservative….instead of this crap we’re doing now…

“I think we should adopt the slogan of compassionate conservatism…We can be fiscally conservative without losing our commitment to the needy and we must redirect our policy in that direction.” —Rep. James Robert Jones

So, because I want to end on a more positive note… and a bit less random, and angry…  I got one of the sweetest complements of my life from a dear, dear friend (and talented 1st chair bass clarinet player circa 2002-ish) … I’m going to put that here too.

“I’d like to thank Juliet Robinson for the inspiration to do this. I find her an amazingly strong and brave woman who has no qualms of talking about her own personal struggles. More people should be putting themselves out there to vent, or ask for help.”

and with that… off to bed…time to think about a lot of the other things going on that are worth being excited over (and broke)…oh, and I love my crutches…so comfortable…and so pretty. I love feeling stable and secure and not have to worry about the crap associated with being a cripple. Oh, and only one attack today, in public… I was out this morning on the way to do my errands and I ended up having screaming tics… and shaking but it was ok. I was stable. 🙂
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::end transmission::

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? 

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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… 

 

From one bzzzagent …to the rest of the world.


Well, sometimes we have to do things for a bigger cause … like bragging… or getting free stuff… or even for advocacy. Usually I like to piss and moan about my life, my brain and my other problems … but tonight instead of my usual ‘The Daily’ I’m doing bit of a BzzzReport for points! Bwahahahah.

So, for all of you looking for insight into my life… well, not so much here…But, if you want to actually have my opinion about like … a really amazing, allergy friendly, making my issues better product that’s marketed to Neurotypicals!

Ever since July when the lovely Saroar told me about it, I’ve been a member of BzzAgent, and they sent me products to review and stuff to eat and this time I got 6oz of Curel Intensive healing daily cream for extra dry or sensitive skin. Well, When they were looking for the perfect person to send this stuff too… they couldn’t have picked someone better than me. Like most people know (except Jono) I’ve not only got super sensitive skin, 10,000 allergies and Dermatillomania. 

According to the smart-asses at Wikipedia= Dermatillomania: AKA: excoriation (skin-picking) disorder, neurotic excoriation, pathologic skin picking (PSP), compulsive skin picking (CSP) or psychogenic excoriation. An OCD/Anxiety related disorder that causes a severe picking of skin all over the body, often to the extent that damage is caused.

Well, I pick at my legs, my arms, my face the worst of all, rip the skin off the cuticles of my nails and blah blah blah… Also, I have the fantastic Tourette’s related scratching until you bleed tic.

Like I said, They must have had some good idea to send this to me…. and I started to use it over a week ago… after a bit of paranoia at if it would work, would it work well, would it somehow be contaminated and make me sick… would it be magical… could I even afford this with coupons afterwards. But, I had a rinse, exfoliated with my green tea-sea salt and Olive oil scrub and whip out the pot of Curel and remembered Sara telling me how heavy and greasy she feels that it is.

I went carefully… I went slowly… just dipped the pad of my index finger into the pot and started slowly. I was a little turned off right away with the fact that I actually had to touch it at all… my sensory issues get overwhelmed with anything like that …

At first, my cranky skin felt like it was on fire from it because it was so irritated and inflamed all over … but slowly the flames began to go out and using a little bit at a time I hit all the important parts….as long as I went lightly with it the consistency didn’t bother me too much, as long as I went slow I didn’t start to freak out.

For the rest of the day the incredible scratching was kept to a minimum…which was amazing. I didn’t have the trigger (whatever that is) to make myself do that… it was amazing and kinda relaxing in a disturbing way. Also, by the end of the day I started to see small subtle changes in my skin… it was kinda nice to not be so red all over either.

So… its been a while and slowly but surly as long as I remember to put it on regularly/daily I might be able to keep the sensory torture down to a minimum… 🙂

I like this stuff. it’s good!

A letter from a Special needs parent


I originally posted this on my facebook back in June in a Tourette Syndrome group. This is from my mom addressing the whole way she raised me. 

Images a TS mother… something that until recently I don’t think I ever said out loud…. I agree that not only does my adult daughter have TS but that I wear it also every day. — its always there, its always on my mind I always want to hear she had a good day, that things went well for her. I am sad my remarkable daughter has TS. and yes, some days I cry. I cry because I feel I brought this perfect being into the world and then one day I realized there were some issues. since nobody was talking about TS then and no doctors had any answers to anything I just knew I would treat my perfect little girl like I would any other child in my care. 

This was my daughter and with or without issues my mission was to teach her from day one everything and anything I could. 

I wanted to make sure she could be able, capable, smart, articulate, involved, interesting and interested in life. and so the years went by and she blossomed — there wasn’t really anything she missed – the awards came, the activities mounted. she graduated from High School with honors, was accepted to a conservatory for her excellence in music, later transferred to another college where she got sick and its too long to go into here and then on for a Master’s Degree while working all the way. she insisted on taking a job at a local bagel shop at a very young age. she is now married….

SO what I think is important for any TS parent to remember…… we the parents are not going to live forever. our children are a bit different…..NOT LESS CAPABLE just different…. so it is important to EMPOWER them, don’t limit them with your fears. 

When they are young get them involved, activities are excellent, keep them busy, let them experience anything that seems of interest to them, teach them how to stand up for themselves, and you as parents get involved…and yes I know often both parents cannot accept TS so you be the parent who does make sure the school knows who you are and that you stand BEHIND YOUR CHILD – give your child the power, the words and the knowledge to allow them to speak up for themselves knowing you are in the wings as backup.. get yourself involved and if you have a day where you just feel overwhelmed and want to cry go right ahead – I do. 

whatever is wrong with your kid u have to help them have a life not only as long as the parent is alive but as long as the offspring is alive….. Then I wipe my face and remind myself how lucky we all are because TS can knock you down but isn’t fatal. 

Nobody ever said parenting is easy – but the choices with TS are deal with it, or deal with it. SO, LETS DEAL PEOPLE… SO LETS DEAL PEOPLE …the absolute best way we can!!!

From the next down … and a CLASS C motorhome


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… 

“What IS going on from your neck down?”


I think in my old age part of me wants to turn into a mall rat….I’m kinda enjoying getting to go now that I have my chair… the mall is usually kinda scary…. I always have to worry about whats going to happen if I have an attack and no one is there that knows me or can help me…

 

Ugh… I wanted to talk about the lady at the clinique counter… but… I have to get back to it … its going to have to be my post for tomorrow… the only thing I want to say right now is that my body is very, very tired… but… I’m doing good with my sample collecting… and 

 

The only thing going on from my neck down is pure, concentrated awesome. Thank you for asking.

 

::End transmission… more in 12 hours, now… shower::