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My job is something else … now there are bugs… I don’t like it … but I don’t want to say anything because I don’t want to get fired … yeah… we cant afford that no matter what Bunny says. I guess I’m still paranoid over everything… well, I know that… and money doesn’t just fall out of the sky… the neuro wants to do another EEG on me too. CRAP … I just wish there was a way for me to get insurance… all I want to do is Zumba and I cant even do that right now … 

but, the ENT helped me a lot getting to breath again and I got steroids… now if I could just lose this last 12lbs I’d be happy. 

When someones life is like an Everclear song…


God, you make me so mad sometimes … I just don’t understand. You act like such a victim sometimes… just join in the games. I left before because I was tired of your shit, and tired of you constantly putting these posts up everywhere to make EVERYTHING all about you ALL the time … because it’s not ALL ABOUT any one of us … we’re a group… we succeed and fail together through this fucked up disorder… but I swear to god… the more you keep doing shit like this and forcing yourself to the outside the worse you’re going to get. Me leaving wasn’t the answer, me leaving was a temper tantrum over not thinking I could control my mouth when I thought the way you handled WHATEVER the problem was turned out to be completely immature and pointless. 

That ‘public shaming’ thing, doesn’t work … all it does it make people mad and in the end NO BODY knows who the hell you’re talking about because you’re not telling the person with the problem … so then you feel like an asshole and end up on the OUTSIDE, again … and blame yourself. 

I get OCD, I understand depression … I have about 1/2 of the illnesses you do in my own forms … and because of that THERE WILL BE CLASHES between people… we’re not perfect… Christ on a bike…with all the problems we have I’m suprised to think that we get along at all sometimes as a unit. 

Did you forget that part?! This isn’t the outside neurotypical world… this is a different way of working together. If you want to step back, step back … but I really don’t think it’s fair you said what I NEED. You don’t know what I want, or what I need because you’re always talking all about yourself… hell, I do that a lot too… I talk about myself, and my problems WAY too much for one person…

but come on, Matt… really… we can work together to help here… but you have to stop telling yourself you don’t belong … and you don’t fit … and making it sound like high school… god…

Rude people … ignorant people … and hope for change


Damn it, I’m tired. I slept for almost 9 hours and I’m still tired. Yesterday was a really crappy day…. It’s sad I feel like I’m saying this a lot lately, I know it comes and goes it doesn’t mean I like it though, I always want there to be some regularity to my life and… I think I just always have that searching for normal. But, I did get some real sleep today … lots of it … until my mom called and woke me up… but, she was worried because she never heard from me. I couldn’t sleep all day, and most of the night anyway. Not healthy… and I need some kind of schedule… or something… whatever.

I had that neurology appointment yesterday… No let’s back up a bit, so the job I have isn’t the job I got hired for… I thought I was going to be a manager, and instead I bake overnight. I make doughnuts overnight not exactly living the dream. I made a mistake, and I make a lot of mistakes.the problem is the egg replacement and the baking soda look exactly the same and there in similar containers, and the writing is wearing off and I accidentally picked up the baking soda instead of the egg replacement and we made dark, little, soft pretzels instead of fluffy like doughnuts. nobody told us that the wholesale goes out two hours later now that it used to we didn’t think we had time to fix it.  So we left.  I’m not even home 15 min. and we had a call to come back and I got two brand-new ass holes ripped into my backside as were fixing it….  To top it off my vocal tics and my motor tics were out of this world!  So I’m sure things, squeaking, and what ever the proper name for the noises goats make, I was doing that too.so I never bothered to tell the idiots that work day shift that I have Tourette’s syndrome.  It didn’t seem important!! it didn’t seem like they needed to know because  I see them maybe once every two weeks…if that.  But because I was stressed, tired, angry, I couldn’t suppress.  Instead of being adults the budget stupid clocking little hands that work there during the day decided they were to whisper among themselves, and just keep looking at me until finally the old blond lady came in and blurted out that she wanted to know “who was making me annoying noises”. 

I have Tourette’s syndrome.  An incurable, debilitating, frustrating, and of obnoxious brain disease. the noises are me.  Okay?! the noises are me.  Keep calm, carry-on.

I mean really, all these people are grown ass adults… They keep going back behind the mixer and chittering at each other about where the noise is coming from, does she know she’s making this noise, why is she making this noise… But nobody had the balls to say anything… until the first one blurted something out. she then decided she was going to compare her rosacea to my Tourette’s… How in the fuck can you even compare that?!?!?!? I understand it’s ignorant, I understand it’s let people don’t know what this disorder even look’s like! you don’t have to be rude.  I think that was the thing that bothered me the most about it.  You just don’t have to be rude… Then others of them kept coming over to me and asking questions and telling me how they “had no idea there was anything wrong” 

do you really think the first thing out of my mouth is going to be ‘hi, I’m Juliet I have life-threatening allergies, and Tourette’s…’ That’s like painting a gigantic target on my back and just waiting for something to happen!! I already learned that once!!!

doughnuts got redone, I didn’t get written up yet, when all had Taco Bell for breakfast and then there was the three hour neurologist appointment… The TBZ was not approved.  The pharmaceutical company won’t get it for me… The REQUIP didn’t arrive yet, so I didn’t even get to start it…and they want me to get a new primary care physician to handle my medication refills which is really stupid to me because I’ve always had my neurologist handle my medication for my brain.  And now they want somebody else to take care my medication!! .  It just seems like a way to screw things up so that way I get sick again.  I don’t want that!!! but again me refills the two of them so that way I can at least get through until I can get in… But I have to pay money to go see this other doctor and I don’t do that kind of money.  If that I pay all this out of pocket!!! yeah, you heard me!! .  I don’t have insurance! the affordable care act failed me because my state didn’t expand Medicaid… It blows…so they ordered another EEG, but this one is a 48 hour one.. So I get to go to work with my head wrapped up like a gigantic Q-tip/tampon for two full days while they study the electricity in my brain to see if the floaters that I’m having are actually seizures again or are from migraines.  They don’t feel comfortable giving me anything until after they know what the actual problem is… Kind of scares me.  What else can I do though, I need to have tests done…we need a few answers at least.  It’s just sad because I’ve had to come to the acceptance that there’s nothing that can make my Tourette’s better.  So were just looking at other ways to make me comfortable… sucks. 

I don’t want to have seizures again, Luca had seizures so I know there’s always a possibility for me too… Well, again… I guess I’m just finding myself… Wishing for a moment of normalcy… Where I’m tired of medical expenses, the bills, the dental work, everything else and I wish we could just go play…I know it’s not about being well… It’s about the quality of life that you have being sick… I just had my hopes up for change and I know it wont happen, but I can deal. I will… I think so…

 

oh well, I’m sure there was more I wanted to say earlier… but I can’t think of it now… Like I’m sure there was more I wanted to say about the walking Princeton last week but, I don’t care now.  And once there’s more pictures I can share Post I might do that… Until then to go back to looking at service dogs, drinking my tea, and probably go back to bed in an hour. 

 

::end transmission::

Reality is hard, but I think my dreams make it harder


I understand I can be touchy, and overreact to things … and the fact that one of my favorite songs is called “Let your freak flag fly” from Shrek the musical … but when someone tells me to “Let your tic flag fly” I just want to go out and yell “how about let your go f*** yourself flag fly”… Don’t tell me to be proud of this … all I want to do is go to the mall on a weekend, or have friends face to face I can do things with… or have made a life for myself…that’s not working 3rd shift in someone elses bakery because I WILL NEVER make enough money in my entire life…

So, yesterday Davis and I went to the mall today, together …. because I can’t go alone since I always end up having either dystonic storm, or a Status Tic episode … and I thought I was okay …we’re there for a few minutes and get to the store I REALLY wanted to see and I end up hitting the floor up on the upper level and have an attack… after that one we take the elevator and then I hit the floor AGAIN in the store I wanted to see…I hate it. I can’t go ANYWHERE because of this … Davis is cool about it, and I adore him because he’s really amazing with my problems … but … I just hate it it’s not fair I can’t just be normal for one day … and I really hate touching the floor, they’re dirty.

but… it makes me so mad… because I want to go to the mall and not be on my face, or need a wheelchair, or crutches… or an escort just to be in public because I cant hold my shit together…I want to have a job that actually pays more than $11 an hour for the rest of my life, I want to succeed… I wanted to go to college and then do something with my life I could be proud of, instead I went to college and got a degree in an area I could do because of my TS … and its useless.

I had so many dreams my life would be so different… and I keep getting told not to be so hard on myself either, that there is always hope and things can get better and my attitude is why things are like this … well, maybe things are like this because its out of my control … because I’m not depressed, or suicidal. I’m just frustrated and a bit sad that all my dreams will only be dreams… I just wanted so much more

Keep your problems to yourself, 20% don’t care, 80% are happy you have them…


I hate when I feel like the theme of the day is “OFFICIAL AIRING OF GRIEVANCES” …. because I look back in my journal and all I see is negative crap … but, then I realize it’s not that it’s all negative it’s that I’m not scared to talk about it, or brush it under the rug. Everyone deals with idiots, and people who feel so sorry for themselves they bring everyone else down around them. So, I think you all know where I’m going with this. 

 

I have friends. 

(shocker, right?) 

 

Like everyone else with friends, I tend to flock towards other people like me … people with neurological problems, people with disabilities, and people who like the same things I do. There’s a small problem with that…. most of my friends have neurological problems, or are disabled. 

Yes, I know. That sounds bad, especially coming from me…. You’ll get it in a minute. 

Everyone I know has OCD, Anxiety, Panic, C-PTSD, Depression, Tourette’s, Dystonia, Learning disabilities, processing issues, visual disturbances … and… are touchy as sin. I know I can be too… and it was worse BEFORE I got my meds adjusted again … but sometimes I just wonder how any of us with all these problems can even WANT to know each other… and GOD KNOWS the internet (as much as it makes things easier to connect to the aforementioned groups of people) doesn’t help when you’re trying to make someone understand a sensitive or emotionally charged topic. 

… this is what got me off on this today … 

 

There’s this person who I thought wasa friend of mine… and I really think he’s actually a jerk. We were talking about a mutual friend who hit finantial trouble … and he was talking smack about her… then made a comment about SSD and other people who have TS and who are on it and are lazy for not trying to work… so I asked if he thought I was lazy because of what he said… and then he got all touchy over it!! Said he’s not using social media anymore because of everything he does. 

 

I’m sorry… but I asked for clarification and now you’re acting like everything is a personal attack. I mean, I know I have a ton of problems … like, more then I should have … but they’re all coherant…they’re all the same list of things… not a random list of disorders that just sounds like… hypochondriac to me. . but I think you have more problems then just that… I’m getting through because I’m captain of my own ship… if I can’t make myself get through this after owning this body for almost 30 years … no one else can. and I know when I need help and then deciding you don’t want to be on social media anymore because someone called bullshit on your bullshit… take it and be a man. I’m allowed to ask a question when you make a rude blanket statement. 

 

so… yeah… can’t stand it… there’s more… I’m tired…

New Jersey walks for Tourette Syndrome at Princeton


I’ve not been back to Princeton in 6 years… Mariel would be 10 this year… All I could think on the miserable drive down there with my father was this song… so… here are the highlights of the day, but… the way I actually was feeling them.

 

Good morning, son. 
I am a bird 
Wearing a brown polyester shirt 
You want a coke? 
Maybe some fries? 
The roast beef combo’s only $9.95 

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It’s okay, you don’t have to pay 
I’ve got all the change 

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Everybody knows 
It hurts to grow up 
And everybody does 
It’s so weird to be back here 
Let me tell you what 
The years go on and 
We’re still fighting it, we’re still fighting it 
And you’re so much like me 
I’m sorry 

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Good morning, son 
In twenty years from now 
Maybe we’ll both sit down and have a few beers 
And I can tell you ’bout today 
And how I picked you up and everything changed 

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It was pain 
Sunny days and rain 
I knew you’d feel the same things 

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Everybody knows 
It sucks to grow up 
And everybody does 
It’s so weird to be back here. 
Let me tell you what 
The years go on and 
We’re still fighting it, we’re still fighting it 


You’ll try and try and one day you’ll fly 
Away from me 


Good morning, son 
I am a bird 
It was pain 
Sunny days and rain 
I knew you’d feel the same things 
Everybody knows 
It hurts to grow up 
And everybody does 
It’s so weird to be back here. 


Let me tell you what 


The years go on and 
We’re still fighting it, we’re still fighting it 
Oh, we’re still fighting it, we’re still fighting it 


And you’re so much like me 
I’m sorry