Monday, April 30, 2012

A rough day and a mean teacher...

Had a rough day of tics today and I was yelping loudly and jerking my body pretty violently in a good majority of my classes. It was a long long day and not a very fun one. I only have 3 more days left of official classes as a senior at my high school and I have SOOOO much work. Tests, projects, essays, exams, and much more. It is a very stressful time, so no wonder my tics are bad right now. To make matters worse, I had an incident with one of my teachers (Ms. P) that made me feel very self conscious and frustrated.

Ms. P is very very strict and gets mad when people try to leave to go to the bathroom during class. In my specialized learning plan though it specifies that if I need to leave the room when I am having a lot of tics that I can, no questions asked. Sometimes my tics just get really bad in class and I need to walk around, get a drink of water, and/or go somewhere to really let my tics out. The problem is that Ms. P is just so used to me yelping and jerking in class that I think she must have forgotten about this accommodation. My tics were getting really bad and I needed to get up and walk around so I asked to go to the bathroom, but like I said Ms. P forgot about my accommodation. I guess my yelps and jerks are so normal for her and everyone else in the class. This  can of course be a very good thing, but in this case it had its downside. She wouldn't let me leave the class at first and kept asking "Is it an emergency??" "Is it urgent??". What kind of question is this? I am a senior in high school and I should be allowed to leave the class without asking permission, any time I want, regardless of if I have accommodations or not! I was not going to say to the entire class "My tics are really bad and I need to get out of here walk around or pretty soon I am just about going to fall over and be writhing around on your floor!" Okay so maybe I am exaggerating just a bit here, lol.

Anyway by the time she eventually let me leave the classroom I was so flustered and anxious that I wasn't really  in the clearest state of mind. She asked me to bring my phone up to her desk so she knew I wasn't leaving to text, but because I was so ticcy and anxious I brought my computer up to her desk instead of my cell phone. Computer....cell phone....same difference when you are so ticcy you can't hold your body still or stay quiet for more than 5 seconds! Ms. P proceeded to laugh at me in front of the entire class though and make a total scene out of my mistake. I was so embarrassed that she was laughing at me like this in front of the whole class and pointing out my mistake in such an obvious way. Have a heart lady...... I'm yelping and jerking my body so bad that I feel like I am going to fall over any second now....the least of my worries is if I bring the right piece of technology to your desk. I quickly told her I didn't have my phone with me and rushed out of the classroom. It took me about 5 minutes to collect myself again to the point where I was only yelping and jerking moderately, but I knew I had to get back in the classroom because Ms. P would surely be mad if I stayed out longer.

When I got back in, Ms. P said "Well look who decided to join us again....." in a very derogatory manner. I must have looked like a dog with its tail in between its legs scooting back to my seat. Not my finest moment. I was so pissed but also embarrassed at the same time! I wanted to go to my friend the learning specialist and tell her the whole story and get all my anger out, but I only have three days left of school, what would be the point? Thank god I will never have to deal with Ms. P again after these next three days.

My best friend Tie Dye made me feel better when I told her the story of what had happened. She agreed that Ms. P was totally out of line and that it was really rude of her to act that way towards me. It's not that she has it out to get me though, Ms. P has it out to get all of her students in general. She's one of those teacher who just hates teenagers I guess, no matter what their situation.

Oh and on a side note, I got my first paying job besides babysitting today!!! I am going to be an usher at the Opera Theater company in my area!!! I am so excited because all the other ushers are my age and I will get to meet new people and make new friends hopefully! Yay!

Friday, April 27, 2012

Tics damaging my toes....yikes!!

So today I went to a doctors appointment for a problem I have been having for a while. About a year ago, I noticed that both of my big toe toes had large bruises under the toe nails and ridging of the nails as well. When I first went to the doctor, we thought my shoes were too big for my narrow feet and that my toes had been bumping up against the front of my shoes so I was told that I just need to get different shoes and wait for the nails to grow out. Well it's been a year now and my toe nails are still severely bruised with blood under the nails so I went back to the doctor to see if he had any idea as to what was going on.

My toe nails look so bad that my mom thought the doctor was going to have to do some horrible procedure and take them off or something! I was totally not convinced that this was what they were going to do though. Well the doctor didn't really have any new solutions for me right then and there, but he did give me new insight into the cause behind the chronic bruising. He said that based on the ridging and bruising, the trauma was being done to the base of each big toe nail and not to the top where we once had expected. He was baffled, lol, and actually said "This is quite a finding". We concluded that the cause must be Tourette's because that was the only thing that makes since. I must be bashing my feet up against the top of my shoe or against the side of my chair at school without being really aware of it. I have so many tics; how can I really keep track of them all?

So the doctor is sending me to a podiatrist (a doctor who specializes in feet) to see if he can come of for any type of solution for me. The doctor said the podiatrist may be able to give me specialized padding for the tops of my shoes to help soften the blows or maybe a suggest a special type of shoe.

Grrr I am so mad at Tourette's right now! My toe nails look so bruised and awful! I haven't been able to wear sandals, flip flops, or any type of shoe that shoes my toes for over a year now. My toe nails are soooo awful looking and I really don't want to keep bashing my feet up against the shoe, but I can't stop myself from doing it. Heck I wasn't even aware of that tic in the first place. Well hopefully the podiatrist will be able to come up with some type of solution. We'll see.

Thursday, April 26, 2012

Visit to an all girls school helped me make my college decision!

Well I am finally back from my college trip. I guess I didn't blog about the trip before I went because I was so busy getting ready for it. I have been off visiting an all girls college l near Boston for the past 4 days. Two days I visited the college, and two days were travel days mainly. I am so relieved because I had narrowed it down to the all girls school and another college and I have finally made up my mind.  I am finally done with the college application process, FINALLY and OFFICALLY! I am sooooo excited!

I have to say I did not like the all girls school much. The all girls environment was strange and felt rather unnerving to me. It was almost intimidating in a way. The campus was so quiet and serious. It was like a nunnery or some sort of convent in a way. I am a good student who takes themselves very seriously, but this type of environment really lacked the excitement of college and in retrospect when comparing it to other colleges seemed rather dull  and dry. It felt like any second someone was going to say "Yes, Mary Margaret let's go to the dining hall and have some crumpets and tea". Not really my thing.

I see myself as someone who is much more down to earth and although I am not much of a drinker or partier, I like my fair share of excitement and activity. And although it was not the thought at the front most of my mind,  I kept thinking, "boy would my tics stand out here". There would have been a lot of places that would have been really hard for me to go to: the main library (which was absolutely silent), the smaller dining halls (which were like the dining halls you might find in a convent almost), the science center, many of the smaller libraries, and even the main student center where almost every voice was at a soft tone or a whisper.  There was a part of me that wondered "These girls are so serious and dedicated to their work. Would they just think of me as mere distraction or disruption to their success?"

There were so many other things that I didn't like about the college though besides those that were TS related.  I wouldn’t be able to minor in Creative writing, I would have to take mandatory PE classes, oh and the fact that there were NO BOYS.

Anyway, I am soooo excited about my final decision. I think I have made the right one for many reasons. the campus I decided on has excitement, a down to earth attitude, and seriousness at the same time that is not quite taken to such an extreme. The people there seem so much more accepting. And there are boys, lol. Don't get me wrong, I like my time with my girl friends and I am certainly  not boy crazy, but the boys add an extra layer of excitement and flirtatiousness to the campus. I have grown up with a brother my whole life, I have had romantic relationships with guys and friendships with guys as well.

My tics didn't pose a giant problem for the trip or anything which was really nice. I have been having a decent amount of motor tics but my vocal tics were pretty mild this week. I had a fair amount of comments on my motor tics and some on my more mild vocal tics but I just brushed the comments off and acted normal. I got  everything from "are you cold" and "are you getting a cold" to the more concerned "are you OKAY?". But I avoiding getting into the explanation of TS  and simply answered "maybe I was getting a cold" "yes I am a bit chilly" and "I'm fine". There was only one time during the whole trip that my yelping vocal tics came out and when I decided to actually explain.

When I was walking with a prospective student and a current student to the science building (which was quite a long walk) I could feel my bad yelping tics building up. I suppressed and suppressed and suppressed until it actually got to the point where it became awful painful . I had no choice and I had to let it out. I tried to disguise it as much as I possibly could, but the student's reaction was "Are you okay? Was that a sneeze?". The typical reaction. I tried to brush it off by just telling her I was okay and not explaining. I didn't feel like explaining because I wouldn't be seeing her ever again really. But it just got worse and worse and when I couldn't suppress any longer, my yelps came out loudly even though they were still semi-suppressed. I was expecting a reaction which I really did not want, but that's what happens when you start yelping out of the blue. And like I predicted, the student I was standing next to reacted. She jumped a bit and said "Oh my goodness, you have squeaky sneezes". I decided to take the opportunity to see how a Wellesley student would react to my tic explanation. So I explained and said "Actually I have tics...not like the movements and sounds that just kind of happen". I didn't want to get to into the "I have Tourette's but I don't swear" explanation and this one seemed to fit better for the situation since I wouldn't really be seeing this girl again. The student was awesome about it though! She just treated it like normal which is the best reaction I can ask for most of the time. She was totally okay with it and said that she was sorry she kind of jumped and she really didn't mean to make me feel uncomfortable or anything and I told her that was totally fine because I do it all the time and sometimes even my friends still jump! She even put her hand on my back as a sweet kind of gesture letting me know everything was okay. This kind of experience really makes me feel like everything will be alright in college and that people are mature and understanding enough to really be accepting.

A good experience overall that helped me make my decision for college next year! I am soooo excited for college and I have a good feeling that I will make plenty of friends and people will accept me, tics and all, just like in high school!

Thursday, April 19, 2012

Tourette's story about my friend who is compassionate and a great listener!

Tourette's Story time! Yay! Today my best friend Tie Dye wanted to tell me a funny story after school. She told me that she was in art class and a girl came in singing the part of the "Fergalicious" song that goes like "Woo-eee". Tie Dye was talking to her art teacher and somehow the "Woo-eee" got stuck in her head and while she was talking to her art teacher she randomly out of no where said "woo-eee" really loudly. She had no idea why she did this but said it must have gotten stuck in her head unconsciously and it just popped out. A brain blip. Everyone in the class started laughing and she turned really red.

Once she was done telling the story, I laughed a bit and then said "welcome to my world". Tie Dye was quiet for a few seconds then said "Oh, right. I guess so.  Maybe I understand a bit more now".

After she got dressed into her sports outfit for her tennis, she came out of the stall and said "I feel bad now because I realize how much I don't understand about what it's like for you". I told her not to feel bad, and we got into a heart-to-heart but at the same time casual conversation about my TS. I told her about people's usual reactions and about how some people stare but some people ask me "what was that?". She asked me how I usually respond to this and I told her it depends on the situation. If its someone who is important to me or someone who I may be spending more time with in the future and I think should know then I just explain it to them and tell them not to be concerned and that its not a huge deal or anything. If its someone who I don't know like someone from a lower grade who I don't think I will ever know to well I usually just play it off, don't really respond with much, and don't really go into a long explanation or an explanation at all. Sometimes people think I am sneezing and I just say "thanks" and let them think that I was just sneezing in an odd high pitched way.

We then got talking about staring. I told her it bothered me the most when people don't ask and just stare really obviously. I told her about earlier today when a girl just turned towards me and stared for like a solid thirty seconds in a really obvious way. I told her about how this is sometimes hard for me, and Tie Dye was so great to listen and talk with me. We gave the girl who stared a me a funny nick name "Gawker" which happens to be kind of similar to her last name. This made me feel better.

Anyway, I just loved how I was able to talk about it so openly with Tie Dye. She listened to me, helped me feel better about earlier that day when I was being stared at, and truly wanted to really understand more about what it's like to live with Tourette's. She will never cease to amaze me with her incredible compassion. The other day she told me she was listening to a sad song and started crying really hard because it reminded her about how much she is going to miss me when we go our separate ways to college. Of course we will still be friends, but we won't see each other every day like we do now. I can only hope that I meet people like her in college who I can become friends with.


So between yesterday and today I have had some frustrating times. Last night my brother used my OCD against me and I really really hate that. We had a fight over the TV. I wanted to watch TV since I had almost no homework and my brother thought I was playing it too loud. He told me if I didn't turn it off he would go in my room and bathroom and mess all my stuff up, in turn putting contaminated things on non-contaminated things and contaminating my entire room. Of course this would have just been more awful for me to bear, so I had no choice but to turn off the TV so he wouldn't contaminate my room. His exact words were "I don't care if you mess up my stuff, but you would care if I messed up your stuff because you have OCD". I hate it that he used my OCD against me and used it to get his way. I am worried he will do this in the future. If he does, I hate to say it, but he will win every time.

Today I am sitting in my regular hang out place but there are a few new girls in the room who don't usually hang out here at this time. Of course I am ticcing like usual and every time I do my yelping vocal tic this girl is looking over at me and just staring. I am fed up with it. It's so rude to stare is such an obvious way. A part of me just wants to say "I have Tourette's. You can stop staring now." but right now I just don't feel like getting into it. I feel weakened from last night and not too confident right now. I guess I will just let her stare. I hate it when people stare at me when I'm ticcing, but that's life. 

Monday, April 16, 2012

Three more Videos in the Tourette Vlog Chain Today! 23 year old Laura from the Netherlands!

So today we have three more videos in the Tourette Vlog chain! 23 year old Laura from the Netherlands made three Tourette vlogs. Her English is superb and she was in a Dutch TSA documentary as well. Soheck out her three new vlogs for the vlog chain! I promise they are worth watching! I hope to be getting even more vlogs in the next couple of weeks.

Tourette Vlog 1 by Laura- 

Tourette Vlog 2 by Laura-

Tourette Vlog 3 by Laura -

Also here is a trailer to the Dutch TSA documentary Laura was in:

Sunday, April 15, 2012

A Message From A Student In My Class! :)

As most of you know, I presented the Tourette documentary that I made to my senior class a few weeks ago. Today a girl in my class sent me this message:

"Hi. I know this is super delayed but I wanted to say how incredible your documentary was. My brother has a really mild tic from his add medication and I never knew what to say to make it easier for him. Your video showed me how acting normal is the key."

I was soooo happy that she told me about this and it was fantastic to hear that my documentary made a difference in another person's life. :)

Friday, April 13, 2012

End of the Week Update

Well today is Friday and I can happily report that I had a whole week of lightish tics. Today my tics have gotten worse, but from Monday until Thursday my tics were relativity mild. My dropping to the ground tic was minimal and I only dropped to the ground twice this week. It seems to be tapering off and I hope that means it is going to go away, but we'll see. I have also been getting lots of sleep, as my tics have not been interfering with my sleep this week. After 4 days of light tics though, my tics are beginning to get worse today. I have had lots of vocal tics, jerking tics, and arm tics today.

Besides this, I ordered a book about Tourette's Syndrome from The book is kind of old and was published in 1992, but I think it will still be good. It came in the mail yesterday and it's called "Dont think about Monkeys". Lol, I don't exactly know why it was given this title. I have also been reading Marc Elliott's "What makes you tic?" book which I am really enjoying! What strikes me about Marc's book is how many countless times a day he has to explain his Tourette's to people who he might not even know. Now my TS isn't so bad that I would have to tell this many people per day, but I do get get questions probably on a weekly basis and I get a little tired of explaining it myself! I don't mind explaining it to friends or people who I know I will be getting to know well, but when it comes to strangers or people who don't know me well, I try to avoid having to explain myself simply because of the fact that it gets annoying for me. How in the wold did Marc Elliott stand it? I have no idea really.

Well I am having a hard time with this post because my tics are bad right now. I keep having to stop writing to jerk my body, arms, and head. My hands do not seem to be cooperating so well for typing this out. I would keep writing, but I just don't think I am up for it right now with my tics the way they are. The more I type, the more frustrated my body is getting. So I will post again later this weekend.

I just did my loud yelping tic and a girl sitting near me from another grade said "are you okay?". I didn't feel like explaining, so I put on the most confident and content appearance that I could and said that I was okay. I know people are just trying to make sure I'm okay, but truthfully I just wish sometimes they could just ignore it and let me be.

Wednesday, April 11, 2012

Talk about your Tourette Syndrome on video! (Vlog Chain Campaign)

I can be very self-conscious about video, which I partly blame on the fact I have Tourette. But I’m willing to do a video of myself talking about my life with TS anyway to help out get this vlog chain started. Would you guys be willing to do the same of yourself or your child talking about or being interviewed about Tourette?
Even though I am self conscious about it, talking openly about Tourette on video both spreads awareness and creates more understanding. Here is how to do it:
  1. Pick out the questions you want to answer from the list below! The more the better! You can upload more than one video, so if you want to answer all the questions, go for it! More power to ya!
  2. Film yourself answering the questions you picked from the list.
  3. Upload the video either to YouTube, and put a link to it on this blog by posting a comment, or load it directly onto the A Little Bit Different Tourette's Syndrome Facebook Page
That’s it! Remember the goal is to really bring us into your life with TS! Put us in your shoes as much as possible. Tell stores from your life, and do whatever you can to show other people what it is like to be you.
We already have received five responses, including my own video! Here are the links to them on YouTube:
And now, without further ado, here are the questions:
General questions for everyone with TS
What is your name and how old are you?
What conditions do you have? (TS, OCD, ADD, SPD, etc.) What is it like to live with these conditions? What is the hardest condition, in your opinion, or the one that interferes with your life the most and why?
When were you diagnosed with Tourette, and what was it like for you and your family? How has your Tourette progressed since your diagnosis? How did the diagnosis affect you, and how are you now that you have the diagnosis versus when you did not have a diagnosis?
What tics do you have? What motor tics/what vocal tics?
Is there anything that is harder for you because you have TS? (e.g. going to movie theaters, taking tests, reading, etc.)
Tell one or more personal TS stories that are funny, sad, inspirational, moving or one that just gives us a look into your life with TS!
How do your friends react when you tic? Do you tic around them often? What have they said in the past about TS? Are they supportive? Are they OK talking about it, or would they prefer to ignore it?
Do you prefer to ignore TS or talk about it from time to time?
Are there certain people you feel okay ticcing around and others you supress around?
Where and in what situations do you supress the most? Let it go the most?
What does a tic feel like to you? How do you describe it to other people?
What do you think people should know about Tourette?
A lot of time — out in public on in school, if you have a tic — will people look or ask you about it? How much patience do you have with people who ask about it?
Most of the time, do you try to explain your Tourette to people or do you prefer to mask your tics and not tell people out in public or people that you are not that close to?
Any specific struggles you face every day with TS? With associated conditions?
How can other people make you feel more confident about your TS?
What is the strangest tic you have had or the one that has bothered you the most?
What do you want others to know about your life with TS?

Kid Specific Questions: (For a parent interviewing their child or a child doing a video on their own)

What is your name and how old are you?
What other conditions do you have besides TS?
What is it like to be a kid with TS? Do you feel different than the other kids in your class?
Do you remember being diagnosed? If so how old were you and what was it like?
What are your tics?
What tic bothers you the most or is the one you dislike the most at the moment?
When are your tics the worst? The best?
If you had to pick a favorite tic what would it be?
Is there anything that is harder for you to do because you have TS or other conditions? Going to the movies? Taking tests in quiet rooms?
What do you dislike the most about having TS?
What do you like the most about having TS?
Is there anything about TS that you think makes you special or unique? Do you think there is anything positive about having TS?
Do you have any funny stories about Tourette’s you can tell? If so, tell it!
Do you tic when you are in public a lot? How do you feel when you tic out in public at stores, restaurants, or at the super marker? Do people look at you/stare? If they do, how does this make you feel? Do you do anything about the people who stare or does your mom?
Do you tic more or less at school? How do you feel when you tic at school and around your friends or classmates?
Do you tell your friends and classmates about your TS? If so, do you think they understand?
What do your friends and classmates say about your TS?
Who do you feel the most confortable ticcing around? Why?
Who understands your TS the most?

Have you ever met other kids with TS? If so what was it like? Did you become friends or like spending time with them? If so why?
Do you have siblings or cousins? How are they about your tics? Do they understand?
What would you want to tell other kids who have TS who were maybe just diagnosed? What advice would you give them? What would you tell them to be prepared for in the future?
What is one thing you think everyone should know about TS?
What do you want to be when you grow up?
What is your favorite part of school?

Questions for those in elementary, middle or high school
Do you tic more or less in class?
Do people in your classes know about TS, and are they understanding?
Do you feel more self-conscious in class or feel that you are disruptive? How do you feel as a student with TS, and how does this impact you?
Do people in your classes ever comment about your TS, or do they just ignore it?
How have teachers been now and in the past about it? Are you accepted? Have they been helpful and understanding?
Have you ever talked to your classes or grades about TS?
Have you ever been bullied? What was it like?
Questions for college students
How was your transition from high school to college? Did it affect your tics in a negative way or positive way?
Do you or have you ever had a roommate? Did you tell your roomate you have TS? When did you decide to tell your roommate? How did you tell your roommate? What was his/her reaction?
How does your roommate deal with your tics? How does your roommate feel about your tics? Are they OK if you are making noises or ticcing? How accepting and understanding are they?
How does your roommate deal with your associated conditions? How does your roommate feel about your associated conditions?
Do the people in your college classes know you have TS? How obvious are your tics in college classes, and how did you tell your class about your TS, if you did?
Do you choose to tell friends in college? How did you tell them, and how do they react and/or feel about your TS?
How do college professors feel about/react to your TS, if they know?
Questions for adults
Do you have a job/career, and if you do, do you tic at work?
Do your co-workers or boss know you have TS?
How do the people you encounter while at work react to your TS?
Has your TS ever caused a problem in the workplace?
Has it ever created something beneficial for you in the workplace?
Talk about what it is like for you to be an adult in the workpace with TS. Bring us into your life with TS as an adult in the workplace.
What is your life like as an adult in terms of social life outside of work? How do friends and people you come across in your everyday life react to TS?

Sunday, April 8, 2012

2nd and Final Part of the Tourette's Study! :)

Yesterday I went down to the medical school campus once again to meet up with one of my favorite people with TS, Dr. G, and to do the second part of the Tourette's study, the MRI. I met Dr. G in the waiting room and then we went back to the MRI control room. There was another woman in the MRI control room to help out with the MRI screening and such. She was very friendly and of course Dr. G was amazing as usual. I took out my earnings and then we went into the MRI room.

I couldn't believe how big the MRI machine was!! It looked huge! I was told to lay down on the laying part of the machine and they got everything set up to make sure I was conferrable. They put pillows on either side of my head to help me keep my head still and put this mask cage looking thing over my face. They also put large earphones over my ears which they would later play music in so the noise of the machine wasn't too loud. I was a little nervous but not too much surprisingly and I wasn't ticcing to much just yet.

When they sent me into the machine, it wasn't really too bad. It just looked like I was in a big white tube and I was only doing some leg and feet tics. First they did some set up scans were I only had to stay still for about 30 to 40 seconds and they tested out the music. It took a little bit to get the music volume right but eventually we found the right volume. Dr. G talked to me through the earphones and they could hear me as well. Just the little things she said in between scans made all the difference and made me feel less nervous.

For the first long scan I had to stay still for 5 minutes and look at a plus sign on a screen. Before the scan, Dr. G made sure I was conferrable, ready, and alright. She told me to stay as still as I could, but made it clear that I just needed to stay as still as was reasonable for me. I was actually able to stay still for the five minutes but was doing A LOT of blinking and eye darting. I couldn't quite get my eyes to stay on that plus sign. After I was done, Dr. G told me I did a good job staying still and said that they were setting up for the next scan, so I could get all my "wiggles out". I jerked my arms, legs, and did a lot of facial tics in between the scans.

I did about 4 more of these 5 minute scans where I look at the plus sign and each time in between I would have time to let out my tics, so it really wasn't all too bad. The cushions on either side of my head, under my legs, and under my arms put pressure on me, kind of like my weighted blanket, which helped my tics not be awful. Like I have said before, this MRI screening was obviously designed for people with Tourette's.

The longest scan I had the whole time was an 8 minute scan, but they put music on and I was allowed to close my eyes which helped. I was able to stay pretty still for all the sections of the scan and let my tics out in between the scans so I was very happy about this! It was over soon enough and Dr. G told me that she was coming in to get me.  I was relived that it was over and so glad I could now tic freely.

I was ticcing a lot more when I came out of the scanner than when I went in, but it wasn't all that bad. I was doing a bit more of my hand shaking tics and facial tics, but overall even though I was a little nervous in the beginning  the whole experience turned out just fine. And after I was done, Dr. G printed out some awesome pictures of my brain for me to keep! Yay! Check out my brain! Pretty cool, huh? A part of me can't even really believe that this is what the inside of my head looks like!!!

Also, I have been looking for things to do over the summer and one of the things I really want to do is either get a paying job or do some volunteer work. So at the end, when Dr. G was walking me back to where she had met me, I asked her if there were any volunteer opportunities that I could participate in in the lab. I was kind of expecting her to say, no sorry but we only let adults work on these kind of studies, but to my surprise when I asked she looked super excited!!! She was really excited that I wanted to help out in the lab, and almost immediately came up with the perfect job for me! While the kids and adults with Tourette's participating in the study are in the MRI machine, parts of their body like their eyes and their legs are video taped and the sound is also recorded. Every recording has to be played back, watched, and each tic needs to be written down with the time stamp and type of tic that was displayed. Dr. G thought she should be the one to do them since she is so good at identifying tics since she too has Tourette's, but there are so many of them! So she thought this would be the perfect job for me to help out with!

She was super excited that I wanted to help out and I was super excited that she was offering me this volunteer position! She will be calling on Monday to get my social security number (since I forgot to bring it with me :P) and I think we will talk more about me helping out in the lab then! I just have to let her know when my last day of school is and then we can start setting things up. I am soooooo excited!!!! I will be participating in doing real research on Tourette's!! What more could I ask for?

I also hope to get a job as an usher at my state's Opera Theature, and I will probably be doing lots of intensive OCD therapy in a summer program and some Cognitive Behavioral Therapy (CBT) to help lessen some of my more painful joint cracking tics. So I hope to have lots to do this summer, but I am most excited about working in the lab with Dr.G. She is pretty much my idol and getting to work with her on Tourette research is going to be my idea of a perfect summer.

Friday, April 6, 2012

New dropping to my knee's tic....ehhhh its not fun.

Since Monday night I have been dealing with a new and incredibly difficult tic. I basically have to tighten all the muscles in my legs, drop to my knees, and have my knees hit the floor to cause a certain pain level. This tic is just awful. I get the feeling and urge to drop to the floor all over my body and it just overwhelms me to such a great extent. The worst thing is that sitting down doesn't even help because my body just needs to do the tic to its full extent. I have dropped to the floor many times since Monday but so far have been trying my best to hold it back while around people at school because it is just so embarrassing. It also hurts my knees really badly so my strategy for now is to just avoid doing it for as long as possible until I just have to. I also don't want to worry my friends or freak them out. Of course they all know I have Tourette's, but regardless of that, seeing someone suddenly drop to their knees would still be reason for concern. They are used to my squeals, squeaks, yelps, facial tics, and my other motor tics like arm tics and head tics but they have never really seen a motor tic this severe from me.

Yesterday near the end of the day, the urge of needing to drop got really bad and I was just doing everything in my power to stop it from happening. My amazing friend Tie Dye noticed that something was up. She asked me if I was okay and said that I looked really uptight. I hesitated for a moment but then decided to tell her the truth because after all she pretty much my best friend and always understands. So I told her about my new tic and how I was trying to suppress it the best I could. She then replied that I should just do it if I need to and asked me what it looked like. I told her that it looked like I was just basically dropping to the floor, that it was really embarrassing and that at least for now I was going to try to suppress it for as long as possible. She was so great and really understood me the best anyone can who doesn't live with Tourette's.  She is the best friend I could ever really ask for. 

After I was safe and alone,  I dropped to my knees many times. It was such a relief to let it go, but it really hurt my knees to do it so many times in a row even though it was on a carpeted floor. 

Today yet again I am battling with the tic. I have been suppressing it pretty much all day every time I feel the need to do it, but of course I am doing all my other usual tics. Tie Dye was great today yet again when she asked "Can I ask you about how your new tic is? Is that okay?". She is such a caring friend to have asked about it to make sure I am okay and of course I told her that it was totally okay to ask me about it, and that it was really sweet of her to ask. I told her that the tic has been okay for a majority of the morning and she kind of laughed and said "the 'majority'" of the morning. I told her that it was nice to talk about it sometimes for me because it makes me feel better to talk about it with those who care. I told her that my new tic is embarrassing and that my strategy for now was just to avoid doing it as long as possible until I have to. She told me that she had run across the phrase "I have Tourette's, but Tourette's doesn't have me" and wanted to know if I had heard it. I told her it was from a great documentary and that I love that phrase!!!   

A rough couple of days with this new tic, but I am dealing with it the best I can. I don't know how long I will be able to suppress it in front of my friends like this, but we will see. Tonight I am going to my cousin Twitch's house for a Passover sader. I will be super glad to see my cousins Twitch, Kitty, and Lipstick again this week! I already saw them once this week because my little cousins were in town this week and now I get to see them again! I am especially excited to see Twitch because we had the best heart-to-heart over text about Tourette's the other night. She is an amazing person to reach out to when I am having really hard times with Tourette's like this. She basically said that she cares about me so much and feels really protective towards me. She said that we have this amazing bond because we both have Tourette's and that out of everyone in the family she feels she is closest to me. Twitch and I have never been this close before but I can tell you for sure that it made me feel so fantastic to hear her say these things. I feel like we do have this amazing bond because of Tourette's. You can talk about how crazy that party was last night with just about anyone, but you can't talk about how painful it is to suppress tics or how it feels to not want to go to school when your tics get really bad with everyone and have the other person completely 100% understand. It means so much to me that I have a member of my family who is my age and who has Tourette's. She not only has helped me so much to feel more confident about my Tourette's, but also whenever I am having a rough time with tics I know I can reach out to her and talk about it so that I feel i'm not so alone. When I talk to her, I feel like I am not the only person who has to deal with this. Gosh I just do not know what I would do without her throughout all this.   

Wednesday, April 4, 2012

The Tics Attack!

Well I think yesterday proved to be a bit too much excitement for me. Being back at school and being able to just let my tics out and tic freely was great! But I think the stimulation got to me because when I got home my tics got so bad that my leg and muscle tightening tics  brought me to the ground twice in a period of only 5 minutes. Both times I ended up in a odd position sitting on the floor with all my muscles constricted and tensing. 

This kind of thing has never really happened before for me and new tics/ things like this always kind of scare me because I don't know if they will stick or how frequent they will become. I was a bit scared a first and worried that this would become a regular thing that would happen at school or out in public. My dog is looked concerned enough, lol, and I think my friends would be highly concerned too if this kind of thing started happening regularly. I  stayed sitting on my chair for a good while and working on my lap top before trying to get up and walk around again, but the feeling of needing to tighten all my muscles and drop to the floor just kept nagging at me with a vengeance. 

I stayed sitting and doing homework on my laptop for most of the night, but when I got into bed I ran into real problems. It took me until midnight to actually fall asleep because of how bad my tics were in bed, and I woke up again at 2am ticcing like crazy. All my muscles in my body were tightening, tensing, and contracting which was pulling me into odd postures and position and making me squirm all over my bed. Then my leg muscles and arm muscles would tighten and my joints would just lock in a stick straight position.  My weighted blanket was of no help and my tics just kept throwing the blanket off of me. I was trying so hard to go back to bed, but the tics just kept coming and coming with no sign of letting up. The premonitory urge I get before ticcing was SO strong that I couldn't even believe it and it just felt like I was going to explode if I even tried keep my body still. Staying still was simply not an option. I got so frustrated during the night with my tics and wanted more than anything to just be able to lie still and go to sleep. I tried getting up and walking around, getting a snack bar, reading, getting on my laptop, and getting water but nothing worked. 

I was wide awake and ticcing like crazy trying to go back to sleep from 2am to 6am. And my alarm for school goes off at 7am.....great. So that was pretty much the worst night I have ever had with my tics as far as I can remember. I have had many first days back to school after break, but I have never quite had this severe of a reaction as far as tics are concerned.

I was determined to go to school today though and I figured if I was just so tired that I couldn't make it through the day that I could go home. So I drove to school and I was surprisingly not as tired as I thought I was going to be. I was still of course very tired, but never so tired that I thought I needed to go home. My friend Steam Punk thinks I wasn't all that tired today because I never went into deep REM sleep last night and the hours I did get were spaced out. I had pretty bad tics all day, but nothing compared to last night. The good thing was that I never dropped to the floor. A few times I had the urge to tighten all my muscles and drop to the floor but I had enough control to find a seat and sit down before I fell. I think the dropping to the floor tic may become a tic that do when my tics get really really bad but since my tics were not really really bad today I had control over it enough to avoid falling on the ground. I really hope I will sleep well tonight. I so need a good night's sleep!