Power of Suggestion

So, I have been having a time!
First off, I am not sure if I mentioned this before, but police make my Coprolalia come out more. My father had always joked saying, 'you should say, f-you pig.'
Power of suggestion people. My newest vocal tic appeared while I was at SummerFest with my friends. We were walking down towards the fair grounds and I saw a police officer. I quickly put my chewy necklace in my mouth but I still managed to yell out, 'Oh my God, it's a pig!' They were luckily too busy directing traffic to react to me. My friends however got a big kick out of it.

After we were leaving the fest, I found myself banging my head forward really violently. My boyfriend waited with me for the tic to stop, as I did it at least 12 times in a row. Roughly five minutes in space. Needless to say by the end of the night my neck was in such pain. I took tylonal and put icy-hot on my neck. The next day it was nearly impossible to move my neck downward. I talked my dad into getting me a neck brace. I decided I would rather look weird than be in that much pain.
I asked people on a Tourette's Support Facebook Page what they would do. Every one of the comments mentioned Lavender. Lavender baths, lavender lotion massages... Lavender everything will calm you down and in turn calm the tics down in frequency as well as severity.

I also think I might be developing Echolalia, (repeating sounds and words) because I have been repeating words I have said and others. Honestly, I don't mind this one. I wish I could trade my Coprolalia for this. Unfortunately Tourette's does not work that way. :( oh well! Sae la vie.

The Imperfect World of T.S. And O.C.D.

I live in a world that doesn't make sense. One minute my body is under my control. Then I'll turn around and be twitching, barking and saying things that make no sense. And tapping. Always with the tapping!

My tapping has gotten worse, and gets on people's nerves. I wish I could explain why I do it, and explain how it's just as annoying to me too, if not worse. I describe it as an itch. Similar to a tic but a little different. The OCD is slightly easier to ignore but only by a hair. I don't know why I have to follow through with the tapping. Some nights I can't even go to bed without checking windows, doors and the stove and tapping them. I tell myself it's stupid and unreasonable, but it still goes on, and I can't ignore it anymore than if someone was sitting next to you whispering in your ear, 'check the door.' 'Tap seven times.' 'Did you leave the stove on?' 'Do it, do it, DO IT!' It's a wonder I haven't completely gone mad!

 The only relief I ever get aside from sleeping is signing. Some people find peace in music, dance, acting; I find peace in ASL. If I am having a conversation in sign language, sign a song, or am practicing vocabulary and grammar, I don't tic and my anxieties seem to melt away. That's one of the many wonders of this odd syndrome. Though I'm not going to question it. :)

Though the question that keeps popping up in my head: If I was deaf and had to sign all the time, would is have ever experienced symptoms?
What a strange world.

Stigma, bullies, and the sort (graphic)

Since it is currently Tourette Syndrome Awareness Month (May 15 - June 15), I have been nonstop posting awareness videos, pictures and websites on all my social media pages. Though today, I got in a few fights with some ignorant, intolerant and frankly, disgusting boys.
I put teal highlights in my hair and painted my nails teal (teal is the color of Tourette's like pink is the color of breast cancer) and took a picture. I posted it on a website called Whisper with a caption reading, "I have Tourette's, but Tourette's doesn't have me". Nothing could have prepared me for the responses. Disgusting comments came pouring in.
"I'm rock hard"
"You're sexy- more pics!"
They got worse and worse. I have never blocked more people in one hour (let alone one day) in my life! All it was was a picture of my face! I was showing off my teal hair. Apparently, going with the common misconception that everyone with Tourette's swears, it attracts more guys than milkshakes in the yard.
Though, as you may know I do have Coprolalia (swearing and offensive language), I didn't dear admit that to these boys. I tried at first to educate them. "Only about 10% of people with TS swear. It's called Coprolalia" I told them the jokes they were making were not funny to me. I asked them to stop. That just made it worse. I ignored it, but the comments kept coming in. I logged off and came back on an hour later and more disturbing comments greeted me. To say I was furious would be an understatement. I was less pleasant. I told them "Shut up", "F*ck Off", I even made a new Whisper post stating, 'I will not, nor will I ever send "sexy" or nude pictures. You have two hands, solve your own problems." Uncalled for? Perhaps. By this point though, I didn't care. I began blocking people left and right. However not fast enough to avoid a few comments to my new Whisper.
"Yeah, two hands. One for each boob." I couldn't resist. "Oh you have boobs. I'm sorry, I thought only girls had those. Maybe you should get that looked at. *BLOCK*
I never thought I'd be hassled like this for trying to spread awareness. Made fun of? Sure. I was prepared for swearing jokes and stuff like that; but sexual harassment? Good Lord.
I won't take my pictures down. I won't stop spreading awareness. I won't let these guys get the best of me. I will not let them win. I will not let Tourette's win. I will keep posting. I will keep barking and twitching till Tourette's is not the punchline of  a stupid joke.

Potentially Employed

I have gotten a call from a local pet store for a job interview. I am so excited but so scared. My Tics have been really enthusiastic. I went back and forth if I should just wait to tell my potential boss about my TS. The American's with Disabilities Act (ADA) forbids them from asking and discriminating me for it and we can only discuss it if I bring it up or my disability makes my ability to do my job difficult.
After a while of thinking I decided to be open and honest with theme even bring in my Medical ID cards. I even looked up some common interview questions and wrote down how I might answer them, and waved in positive things about my TS.
When asked to describe myself, I explain how my TS has helped shape me into a positive person, made me sensitive to other's disabilities and very empathetic, not to mention able to laugh at myself.
I say a weakness of mine is I take a little longer to do some tasks such as cleaning because my OCD makes me want things just so. On the plus side, I have been known to be a very thorough cleaner!
If they ask me if I have any questions for them, I plan on asking if they have ever hired anyone else with Tourette's or any other disability, and how they got along in the store. Mostly, I just want to see if they have had any positive or negative past with a disabled person of any kind. If it's negative, I will aim to be better. If the answer is positive, well, I have some big shoes to fill!!! :)
Well, my interview is in 10 hours. Wish me luck!!!

Recent Stories of a Tic-tastic Life

Remember when I told you that some of my "friends" weren't so tolerant? Well I recently added another to that unfortunate list. It started with a trip to the grocery store.
I was having a bad day, but just couldn't stand being in the apartment any more so Dad took me to the local super market. We go there often and roughly 60% of the staff know me. So I feel pretty safe there.
During check out a woman was ahead of us, and I began Ticing. I yelled "F*ker" a bit and the woman stopped dead in her tracks. My Dad looked at her and told her I have Tourette's. She looked right at me and said, "no you don't." I was stunned. I'd heard of people going through this before; a stranger not believing they had it, but I never was told that.
"Actually, I do." I told her, a little annoyed.
"No, you don't." She scoffed and walked away.

More than a little bothered by that encounter, I went on Facebook and told the story on my timeline. Right away, my FB family told me to not worry, she is just ignorant and I'll probably never see her again. Then my now ex-friend, (let's call her Jane Smith) commented.
'Im sorry, but I don't think you really have Tourette's either.'
I was stunned. Though not entirely surprised, she had been a little more than rude to me before at an anime convention earlier this year. I just never thought she'd say something like that on the Internet where all our friends could see.
'It's not unheard of to experience tics later in life Jane.'
'Alle, you self diagnosed your mutism last year and now you suddenly have severe Tourette's? I don't think so.'
I'd like to take a minute to clear up a few things. Yes I had problems talking in school, I had been through some trauma, and had to suddenly move half way through my senior year. My physiologist knew it was a temporary thing and I worked hard to be able to talk by the end of the year, and I did. I never 'self diagnosed' anything. And I explained that to her. Second I don't have severe Tourette's. I am able to work, able to go to school, able to do anything. I just tic and sometimes need a little extra time to complete tasks. No big deal. I explained this to her as well.

By now my friends from the TS page I joined on Facebook had caught hold of this thread and began giving Jane their two cents as well. 'Where's your support?' 'She met a Nerologist, he diagnosed her, she doesn't need to prove anything to you.'

Jane slowly dug herself a deeper hole by trying to sound smart. She argued that people who see Neurologists have physical handicaps and the proper doctor to diagnose Tourette's is a Speech Tharipist. Yeah. I laughed a little at that.
I then was curious and asked her what she thought the definition of Tourette Syndrome was.
She never replied, but she did unfriend me.

I was sad to loose another friend to ignorance and unwillingness to understand, but I don't have room for people like her in my life

If you have had any similar experiences or comments, please feel free to leave a comment. I look forward to hearing from you!

Have a tic-tastic day!

My Diagnosis and my Doctor visit and other

Diagnosis concludes that it is Tourette Syndrome.
I'm excited to have a diagnosis. My tics have been a little enthusiastic lately. My Nerologist was SO nice. He gave me the idea to do power lifting. He says, 'this is a movement disorder. I treat it with movement.' :)
My friend and I are going to go shopping for her birthday. She has been the friend who was the coolest about my tics. She jokes with me about them, but I know she will defend me if someone takes  the joke too far. She knows the boundaries and when it's not funny anymore. I could not ask for a better friend!
I love you A.W. <3

Good news!?

My dad finally got me an appointment with a Nerologist!
For the past week they have been saying stuff like, 'we got a referral from your primary care doctor, but nothing explaining why.'
-_-# Why do you think? I'm asking to see a specific Nerologist who specializes in TS and has TS himself... Hmmm time to call in Sherlock Holmes, huh?
But anyway, I am excited to see him. The sooner I get a diagnosis the better. I still tell people, when they ask, that I have Tourette's and... I'd really rather not, unless that's really what I have. The Nameless Disorder is harder to deal with, and live with than what I hope having a name will be.

A side note: We have a new employee at my job. We'll call him Jay. He has been really cool about my tics. Though he's never asked me and I never told him a word about what's going on, he has been really awesome. Especially when 'Mary' tells him to "shut up". I really give him props for that.

So, that's my good news. I put a question mark because some people are surprised I'm happy to see a Nerologist. Well, like I said before living with a nameless disorder is tough, and I'm hoping putting a name to it will make life a little easier. Am I nervous? Of corse! Though I am used to seeing doctors by now. I see a Tharipist/Phsycologist every other week. I see a Phsyciatrist once a month and my primary care doctor once every 2 months. Along with an occasional ER visit which is usually unrelated to my tics. (I have other health problems)
Seeing doctors regularly, I know the drill pretty well and am learning the lingo they use. I just worry he won't come up with anything wrong and think I'm making it up. I keep telling myself that won't happen because I'm not faking it. It's impossible to fake it. You'd have to focus on it 24/7. You'd have to remember to tic.
On good tic days I won't tic too much, but I have bad days where I won't hardly have a minute without it. Though it still worries me. Irrational as it may be.
Well, thanks for reading. Catch you later!

Tics in Public

I am beginning to not really like going out, purely for the looks I am getting.
I was out to dinner today with my dad, and there was three separate families aside from us and the looks I got made me uncomfortable.
The children were obviously just as uncomfortable, if not more. The parents tried to get them to ignore me, but shot me looks that spelled out, "shut up."
Which ironically was the tic I was doing. I couldn't stop yelling, "SHUT UP!" and jerking my head and tapping the table. I also yelled, "Nark." A few times.
Dad told me that if they don't say anything to me, I shouldn't say anything to them. I wanted to though. I wanted to explain to them why I was shouting and twitching. Anything to get those cold eyes to stop drilling holes in my skull.

On a happier note, tomorrow... er... Today I guess technically; my dad is going to call a Nerologist and set up an appointment. Since dad works for Aurora, and we heard of an amazing Nerologist who has Tourette Syndrome and both his children have it too, and works for Aurora; we are calling him. Of corse the only down side is he is located roughly two hours away from where I live, but hey, I heard from multiple families at a Tourette's meet-up that he is the best doctor that they had ever had, so two hours seems worth it for guaranteed good hands. 

I am very excited about this, because I am about this close to getting a name for whatever is causing my tics. Having a nameless problem is not all it's cracked up to be. I sort of feel like Wonderer/Wanda from the movie 'The Host', where she is sitting on the mountain kissing a boy and Melanie yells at her to stop. The boy leaves and Wanda is sitting there and says, "It's weird being in a body that won't let me use it." Yes it is. It sucks. 

Honestly, I don't know if anyone is reading this, but just posting my story helps me feel like someone out there, besides my handful of family and friends who are still with me actually cares. So if you are reading, thank you.

Have a Tic-Tastic Day!!!

Venting and Analyzing

This post is probably mostly going to be a vent. Sorry.
Lately I have been having mood swings from excited and loving life to wanting to scream, cry and die.
Part of my moodiness probably has a lot to do with the events I've been attending. I went to an anime convention with a few friends and was excited for that and did have a good time, but there were some complications as well. Some from my stupid tics and some were from unpleasant in counters with friends and fellow con-attendees.
I have three new tics (been having them a while) one is a high pitched squeaking noise. Another I raise my hand like I'm in class. And last the F word, (this doesn't happen often, just like the S word, but it does happen and is always followed with a 'sorry'. It's almost like its part of the tic.
I am attending a Tourette's get together in a few weeks and am very excited. When I'm agitated in any way my tics become more... enthusiastic! My therapist asked me to try something where I don't talk for a little while; to see if my vocal tics would at least calm down. Just as an experiment. I didn't try it yet, mostly because of my history with mutism. Silence is addicting and I don't want to slip back into my silent world.

I have been doing a little research for what my nameless disorder could be. I'm not sure if I mentioned before, but I have 3+ "possible diagnosis"
1) Tourette's Syndrome
2) Conversion Disorder
3) A Tic Disorder
4) Some Movement Disorder
I doubt it's a tic disorder as my Symptoms are Motor and Vocal and have been present for almost nearly two years
I also doubt it's a movement disorder purely because I have vocal tics also. And they are strong/loud/persistent and hard to ignore.
It can possibly be Conversion Disorder as the tics did appear during a traumatic and stressful point in my life, and I fit most of the signs and symptoms.
It has the possibility of being TS also though because the symptoms began before I turned 18, I had simple head, eye and arm tics and followed by simple vocal tics shortly after. Common signs. I also have OCD symptoms. Things must face a certain way (ie. the toothbrush and toothpaste must face forward and be located on the left side of the sink. Every time I pass the tree in front of my house I must knock on the branch seven times. If I make a mistake when I type or write a word, I have to erase the whole word then rewrite it.) things like that. And I MUST avoid the number nine at all costs. I don't even like wring that word here. It's stressful. I must do things in sevens. I must do things in sevens. I must do things in sevens. I must do things in sevens. I must do things in sevens. I must do things in sevens. I must do things in sevens. It lowers my stress levels enough to move on and distract myself.
Anyway, this is long enough and it's late. I need to get some sleep. I just felt the need so vent and analyze the information. If you're reading this and have any feedback at all, please feel free to comment. I don't bite!!! :)
Talk to you later!

How Mary Came To Be

When I try to picture my tics, I always tend to picture a fight. I picture a duplex in my headache where me and another person live and each of us are fighting to be the landlord. I named the other person Mary. (My first vocal tic was shouting out, "BAH!", and I always made a comment of 'Mary had a little lamb' or 'Bah bah black sheep')
Each of us wants to have control over my movements and vocalizations and thoughts. It's a tiring war and unfortunately sometimes Mary wins a battle. I give up and tic like crazy, I don't leave the apartment that day, for fear of being stared at, judged and mocked. I'll cry and ask, 'why me?'.
I however refuse to let her win the war. I have strong, brave days where I go out to dinner. I'll see a movie in the theater. I'll go to a museum and have a good time. I haven't been kicked out of a place so far *knock on wood*.
My newest tic is the F word. Though it hasn't happened often, when it does it is loud and clear. The first time it happened it was a full sentience (shut up f-ck face!) no one was in the room with me (thank god) but it scared me a bit. It happened once after that a few days later. My father was on the phone and I was drawing. I just yelled 'f-ck F-CK!'. It was a family friend on the other end and I heard laughing. I smiled shyly but was embarrassed. I wanted to cry.
Mary won that one, but I refuse to stop fighting till the day I meet my maker! I will win.
:)

Up To This Point (my tic history)

Hey guys,
I have never blogged before so bear with me. :)

My tics started in high school. Somewhere between Sophomore and Junior year. It was different in some ways than stereotypical first tics of Tourette Syndrome. I started shrugging and jerking my arms every which way. As time went on I graduated to kicking and stomping my feet along with clapping my hands. It was worse in the car. By the time I graduated from high school I began my first vocal tic. 

"BAH!" I also began tapping things. I just HAD to touch certain things, and I had to touch them a certain way. Seven times.
By this point my father (I only live with my dad) was very understanding. He never scolded me. Though, I think he might have thought about it when I first yelled, but saw right there that I hadn't meant to do it. Instead he gave me a hug. I'm lucky to have such an understanding father.
That following summer my tics flourished. I began rolling my eyes, sniffing, gasping and frowning exaggeratedly. I also turn my head or shake it as if I'm saying 'no'. I added new sounds and words to my Tic Vocabulary. 
* Bah
* Bwah
* Chop
* Shop
* Drop
* Sss
*Shh
And within the last two months:
* Shut Up 
and *The S word had gotten added to that list. -_-#

Most of my friends are tolerant. Some aren't, but that just shows they aren't true friends.
Well, I just wanted to tell my history first so if you are reading this and I make a reference to a past event or tic, you would understand it.
Thanks! Bye!
PS I had not yet been diagnosed with Tourette Syndrome nor any tic disorder. I am waiting for an appointment with a neurologist. ;-)