Dad is home! Camp is one week away!

My dad is officially home from the hospital! I'm his "babysitter" tonight lol! Camp Twitch and Shout is just one week away!!!! I'm beyond excited to be at my favorite place on earth with the best kids ever in just one week!!

Dad's Surgery

Yet another tic injury....tomorrow my dads heart will be stopped for a whole 5 hours and he will be placed on a heart/lung machine. Oh yeah, and the whole chest cracking part. It really does sound awful. My tics were through the roof today as is to be expected. On the more humorous side of things I kicked the elevator wall so hard that it triggered the emergency call button to go off....oops! Anyway, please with my dad luck tomorrow. He should be out of surgery by 1pm, and I'll try to post an update around them. 

We are also getting a kitty as well. At least I have something to look forward to tomorrow! Her name is Sadie and she is just precious. Can't wait for her to join our family! She's going to have to get used to my tics! My dog is used to all sorts of noises and movements in the house. She usually doesn't react but tonight my tics were loud and she thought I was trying to play with her and she started barking and digging! lol!

Beginning of Summer

My tics have been a bit more intense today than they have been lately. I think it's because i'm so excited for my 3rd year as a counselor at camp twitch and shout! Cannot wait to see my camp family in a little over a month. My dad will be having open heart surgery about 2 weeks before I head to camp, which may be another reason my tics are acting up. Between my dads surgery and camp, I think this summer may prove to be a ticcy one, but no where close to last summer or the one before it. CBIT and medication has helped a lot and I know that without these interventios my tics would be much much worse with this extra stress and excitement. Today I am thankful for CBIT and my neurologist. I am thankful I am not screaming and hitting myself for a good majority of the days like last summer.

Every year I go to camp, I seem to gain at least a couple new vocal tics, at least temporarily. My motor tics tend to stay the same. I'm interested to see what this year at camp brings, and I am hoping it doesn't bring anything too crazy! Today an old camp tic showed up out of the blue, the tic where I say "no". I only did it a couple of times, but it's clear camp must be on my mind :) 

The Importance of Support for Individuals with Tourette's: An Incredible Professor

I know I haven't blogged in a while, but there has been a lot happening in my life and things have been pretty great. I want to update you all about something that has given me a lot of inspiration and hope about my future (and write this for myself to chronicle my college journey).

I signed up for a course I was very interested in at the beginning of the semester and was very nervous going into it. I was particularly nervous because the professor of the class is very prominent in the field I want to go into . I was nervous about how she would react to my tics and I was worried that my tics would influence what she thought I was capable of achieving (something my parents told me would happen when I was first diagnosed) . I KNOW that my tics don't effect my ability to be a student, to write, do research, or succeed and move forward with my goal of getting a PhD in a very research oriented area in ANY way. But that thought of "what if she doesn't understand"was in the back of my head. This class and my relationship with this professor has officially proved my parents so WRONG!

Every relationship I have had since my diagnosis, with a professor, a teacher, a mentor, a friend, or a boyfriend has shown me that my tics will not effect what other people think of me or what they think I am capable of achieving. This relationship/ mentorship however, has blown me away.

Putting things in perspective for my readers a little: my  professor (who I will call Dr. Brown) is a is a full professor at a university that is ranked #14 in the country, is the principle investigator of a prominent research lab, has published coutless instrumental papers, and is as I have said a prominent and well known researcher in her field. In other words, she's awesome and anyone who is anyone in this field knows how she is.

In the beginning of the semester I went to meet with her to tell her about my Tourette's/ tics and how it would effect me in the classroom. I do this with all of my professors (especially for smaller classes) in which my tics might be more noticeable to those around me and to the professor. She reacted very well, like all of my other professors have. She was very relaxed about it and didn't seem concerned at all.

Even though I was nervous about her seeing my tics in class, I was able to be relaxed and just be myself. I loved how she taught the class and was so fascinated by the material. Every class period I had with her, I felt more and more confident that this is exactly the field I wanted to go into. Every lecture held my attention for the entire 2 1/2 to 3 hours in a way that sparked my interest beyond that of any other class I have taken. I started speaking up more in class and asking questions about the material. I wanted to know more and loved the discussions her material sparked in class. I also particularly enjoyed the writing assignments! Since this was a writing intensive class we had a paper abstract due almost every week and a midterm and final paper.

I stopped focusing on my tics in class, and more and more they weren't even a thought in my mind during class because I was so interested and focused on what I was learning and how it applied to my independent research I do at the medical school.

When it was time to write my midterm paper, I was excited. I picked one of my favorite topics, a topic related to sensory processing disorder, Proprioception! Although I actually knew very little about Proprioception going into the paper, I did a lot of research and learned so much out of the experience of writing the paper. I turned it in and then went on spring break.

When I came back from spring break, I was excited to get my paper back and to hear what Professor Brown thought of it. I value her option and insight so much and was very curious what she thought of my paper. Sure, enough when I got it back, I got an A! She had written on the paper, "excellent paper! great transitions as well as content!". Then she said to the class "I'm going to ask a few of you to stay after class because I would like to get some of the papers you referenced in your paper to use in some of my other classes". I figured she was not talking about me since my paper topic was very specific and probably would't directly relate to the content she was teaching in any of her other classes. However, at the end of class she asked another student in the class and me to stay after.

She asked the other student first if she could use one of her references, and then when the other student left the room, Professor Brown asked me if I would send her my whole paper. She told me that she would like to use my paper as an example of an excellent paper to show to students when she taught this class in the future. I of course was not expecting his! I saw that my paper got an A and had really enjoyed writing it, but I would have never imagined that it was so excellent that she would want to use it as an example. Of course I said yes, told her I was honored, and sent her the paper.

Later on I had scheduled an appointment to meet with her to get her advice about applying to PhD programs next year. During the meeting, time and time again I was blown away by how much she believed in me. She told me how impressed she was with my writing and that she thought my writing was at an even higher level than some of her graduate students (wow!!) and during the course of the meeting stressed that I should focus on research in graduate school instead of clinical work because she believes I have what it takes to succeed in the highly competitive research field and I have what it takes to publish and teach, allowing me to make a larger scale difference and one day take on a position like hers. This is essentially my dream. This is what I have dreamed of for years. There is nothing that I would want more than to make this kind of difference in the lives of children, to have my own lab, and to do research at that level. Professor Brown, someone who I admire and look up to so much,  was sitting in front of me not only saying that it was possible for me to do this, but that she believed in me and believed I could not only achieve my dream but excel in it.

When I asked her if she would write me a letter of recommendation for graduate school, she said she would be glad to. I think her letter could make a huge difference. She then asked me if I planned to tell the people whose labs I will be applying to/ interviewing with about my TS. I told her I was unsure at this point. She then proceed to tell me that if any of the professors whose lab's I was applying to had questions about my TS, she would be happy to talk with them. I thought this was so incredibly sweet and amazing of her to offer. I felt taken care of, and so supported. I felt like I had someone rooting for me, someone in my court, someone witting to stand up for me if anyone questioned me or wondered how my TS might affect me in a lab / research setting. I told her because of how my tics have been on the more moderate/ mild side lately that this probably would't be necessary, but I can't even put into words how supported it made me feel.

Someone who I was so nervous to tell about my TS is now willing to stand up for me and to help others understand what TS is and how it effects me. For me, I cannot even tell you how much of a huge deal this is. Because of how my parents handled my TS, I have had very few adults in my life who have been able to stand up for me and make me feel so safe and understood. While this has made me my own best advocate, it's an incredible feeling to know I do not have to carry this weight all by myself and to know that if I need help advocating or am in a situation where I need a little extra support, I have someone willing to be there for me :)

Junior Year First Semester! Prove them Wrong :)

Well i'm back home for winter break. Overall, I had a great semester!

I was appointed to two leadership positions on campus. I'm now on the Executive Board for my university's chapter of Psi Chi, the National Honorary Society for Psychology and I was also appointed to be on the University Policy & Practice Affecting Students with Disabilities Committee.

I continued with the research i've been doing on Tourette's Syndrome and Traumatic Brain Injury on the medical school campus, and am working towards a number of publications for next semester. Hopefully at the end of next semester I will be able to say i've published a full paper on Tourette Syndrome and presented a poster on Traumatic Brain Injury at the National Conference of American Clinical Neuropsychology.

I also got two final grades back for the semester. One is an A and another is an A+ ! I'm pretty sure that the rest of my grades will also be A's as well. So far it's looking like I'll meet my goal for this semester which was to make the Dean's List at my University again.

Last thing I promise, I'm moving into a new dorm for next semester! I not only get a much bigger dorm room, but I also get to be closer to my classes, closer to the Starbucks on campus, and I'm right above the dining hall so I won't even have to go outside to get food. I get to be in a new dorm environment, meet new people, and live across from one of my friends in my sorority. I have a feeling next semester is going to be great!

Anyway, that's my semester in a nut shell. Don't ever let Tourette's hold you back! Make goals and work towards achieving them. Don't ever let someone make you think that you can't do something because of your Tourette's. If anyone ever does tell you something like this, prove them wrong :)

Mouth Splint for relief from jaw tics

Got my mouth splint today! I'm excited to finally have something to give me some relief from my jaw clenching tic. My orthodontist explained it as a bandaid for my mouth. I'll start wearing it every night to give my jaw some relief when I sleep(I clench and grind my teeth even more in my sleep apparently) and if I ever really need to I can wear it for relief during the day too. I'll probably only ever wear it at night or on weekends (even though its transparent/clear colored, it's pretty notifiable). It feels good to have it in because I know my teeth are protected. My dentist told me if I didn't get the splint, I could end up with permanent damage to my enamel and have to end up getting crowns on most of my teeth. This is the first tic that has done damage to my body, and while its a tough realization that one of my tics is actually doing real damage, its important I know so that I can take the proper steps to protect myself and my body.

"Stand Up for What You Believe in, Even if it Means Standing Alone"

This is a post that I originally wrote in 2011. I decided to re-post it today because of a conversation I had with my mom about the night that I wrote about. I also wanted to re-post it for many of my campers from camp twitch and shout. This is something I wrote when I was only a year older than most of them! I can't even believe that! I might end up re-posting some of the other things that I wrote when I was around their age too. I think that might be interesting :) 

November 1st, 2011- 

"Today I wanted to write a post about an encounter I had with my grandpa over the summer. This summer, my grandpa took my family (my mom, my dad, brother, and me) along with my step aunt, step uncle, and two younger cousins to France. In France, we didn't eat as a large group that often, but on the last day we all ate together at the hotel's restaurant and I sat next to my grandpa, per his request. My tics had been bad that day and near the end of the meal I started shaking my legs and knocking my knees together. Everyone at the table knew I have Tourette's including my grandpa, but I was still very self-conscious about it and at the moment I really would have loved nothing more than to be able to sit still. I tried as much as I could to stop my legs, but they just weren't going to listen. I figured that this was my family, and that they understand and know it's not my fault. I tried as much as I could to reassure myself that things were alright. A few minutes later though my grandpa did something that really surprised me, especially because he's a radiologist  and went to medical school. He put his hand on my legs and said "stop that!" He even tried to hold my legs down. I said I was sorry and tried my best to keep my legs still, but after another few seconds, my tics started up again. My grandpa looked over at me again and said "Stop twitching. Your making me dizzy!" I didn't have anything to say back to him really. I just couldn't make myself stop no matter how hard I tried. After another minute, my grandpa said something that I will never forgot. He told me that I really needed to try harder and that if I really told myself to hold still, I could. He told me that if I tried, I could stop. How could my grandfather, a doctor, actually be saying this to me? At that moment, I wanted nothing more than to be able to stop.

As much as I felt surprised at his reaction, I really shouldn't have been too shocked. This was not the first time this had happened. A similar thing happened in 3rd grade when I was riding with my grandpa in his car and doing one of my first tics, sniffing. I had no idea what a tic even was, but I remember how he pulled over on the side of the road and stopped the car. I remember how he told me that we would sit there until I stopped sniffing and that until then, he wouldn't start the car back up again. I'm not quite sure how long we sat there before he realized that no matter how many times he told me to stop I wasn't going to. 

I was reminded of that moment as I sat at the dinner table thinking that I had had enough, that I couldn't stop. Remembering that moment, I decided to stand up for myself and for that child, that past version of myself, who didn't know what she had done to make her grandpa stop the car and start yelling. So, I got up from my chair and told everyone I was going back to the room and that someone else could eat my dessert. I walked back to my room and when I got back I started to cry and tic all over. After 10 minutes of ticcing and crying, my mom came to the hotel room with my dessert and tried to comfort me. She ran her fingers through my hair and told me that my grandpa had left and that everyone else wanted me to come back up. At this point I was crying and ticcing too hard to come back up though, so I stayed down in the room until I had calmed down enough to fall asleep.  

The next day my aunt stopped in my room early in the morning to say goodbye before she left for her home New York. What she said showed me that my grandpa even though my grandpa had said those things, the rest of my family accepted me and thought I had done the right thing. She told me, "I wanted to come see you before I left. Your Grandpa being a jerk last night and you really handled yourself well" and then she hugged me. I later learned that she had really defended me after my grandpa left. That night, she told everyone that I had done the right thing by leaving the table. My aunt made something that really hurt me into something that showed me that she and the other members of my family accept me for who I am even if my grandpa doesn't understand and just wants me to be normal. News for you grandpa: I'm not normal. I'm unique, creative, compulsive, and twitchy. I'm me." 

July 29th, 2014- 

Today my mom and I were walking the dog and talking. In conversation, I told her about a quote I saw that I really liked that says "Stand up for what you believe in, even if it means standing alone". She told me that she really liked the quote and that it reminds her of me and the time I stood up to my grandpa in France. She told me that I'm the only one who has ever stood up to him like that about anything and that everyone else is too afraid to stand up for him. She told me that she's so proud of me for standing up to him like that and that what I did was truly "classy" and the right thing to do. I truthfully don't know if she remembers what exactly I was standing up to him about, but I hope she does. Always stand up for what you believe in, for yourself, and for others. It might mean standing alone or stepping far out of your comfort zone, but in the end others will see your courage and strength and even more importantly you will know you did the right thing. 

TS Awareness Month Project Filming Instructions

REMEMBER, when filming, if you are filming with a phone or tablet please turn it sideways so that when it is transferred to the computer it will take up the whole screen! Also try to film in an area with good lighting and with minimal background clutter. It's sometimes a good idea to film against a wall, sitting in a chair that's against a wall, or sitting at a clean table or on a couch with minimal clutter. Also be aware that if you are filming outside (which can be a very good backround!) that if there is wind , cars driving by, or a lawn mower going, the audio will not come though!

Uploading Instructions: Once you are done filming, upload the video(s) to youtube and click the box that says unlisted. Then send me the link to your videos! If you have specific uploading questions, feel free to ask me!

There are three ways you can help out! You can do one of these options, two of these options, or all three!

1. Answer the questions below in a video
2. Take a video of your tics or your child's tics

Questions For Kids: (In terms of lighting, background, closeness to the face your video should look something like this: https://vimeo.com/93571299. Film close up to the face, try to make the video as pretty and professional looking as possible!!! Look at the questions ahead of time and plan out a background/ place to film.) 

State your name, age and that you have Tourette Syndrome

How would you describe what Tourette's Syndrome is to someone who doesn't know much about it?

What would you say to another kid who was recently diagnosed with TS?

What are some bad things about having TS?

What are some good things about having TS?

How does having TS make you feel/ If you had to describe what it's like to have TS in one sentence how would you describe it?

Do you ever get bullied because of your TS?

Has something funny ever happened because of one of your tics?

What's something you've said in the past about having TS such as a quote or a statement? Or make up your own quote now! Say it in the video. (if you need to think on this one for a little while that's okay!) Some examples from some other kids are "when my tics first appeared they were very bad. I thought I was dying. My whole body hurt from the inside out" and  "My tics make my special, that's how I like to think of it"

Tell a story of something that happened because of your tics. It could be a funny story, a sad story, something that made you smile, or any other type of story that relates to your tics and something you have experienced as a result.

Do you have any associated conditons with your TS like ADHD, OCD, or anxiety? What is that like for you? What are some of the things you have to deal with because of that?

How do other people react to your tics?

What is it like for you to tic in public?

What is it like for you to tic in school?

What are some of your hobbies? What are you passionate about? What are some of your accomplishments? 

These are suggested questions! Try to answer them all, but feel free to skip over any, add in your own questions, or talk about whatever you like!

How does having TS make you feel/ If you had to describe what it's like to have TS in one sentence how would you describe it?

Are your friends understanding about your TS? Are your teachers? Are your other family members?

What's something you've said in the past about having TS such as a quote or a statement? Or make up your own quote now! Say it in the video. (if you need to think on this one for a little while that's okay!) Some examples from some other kids are "when my tics first appeared they were very bad. I thought I was dying. My whole body hurt from the inside out" and  "My tics make my special, that's how I like to think of it"

Tell a story of something that happened because of your tics. It could be a funny story, a sad story, something that made you smile, or any other type of story that relates to your tics and something you have experienced as a result.

How do other people react to your tics?

What is it like for you to tic in public? How do you deal with ticcing in public? 

Also if you are a girl, answer these questions: 

"What's it like being a girl and having TS?" 

"Do you think it's important to let others know that girls have TS too? Why?

Add in anything you think you should say about being a girl and having TS!

Questions for Teens/Adults (Try to make the video as pretty and professional looking as possible!!! It might be a good idea to look at the questions ahead of time and also plan out a background/ place to film ahead of time. Also try to film close up to the face. For a good example of what your video should look similar too click here: https://vimeo.com/93571299): 

Say your name, and that you have Tourette’s Syndrome

What was it like for you when you were first diagnosed with TS?

What are some of your tics?

Do you have any tics that hurt you? 

What does a tic feel like to you?

What do you want other people to know about having TS? 

 Do you have any associated conditions? If so, what are they?

  How do your associated conditions affect you?

How do you stay positive when you are having a difficult time in school or in general with your TS?

Have you had any negative reactions? What were they? 

How do you deal with negative reactions?

What is it like for you to tic in public? How do you deal with ticcing in public?

What was school like for you when you were a kid (elementary school, middle school, high school, college)?

What is the hardest part of having Tourette’s?

 What is the best part? 

What are some of your successes you have had?
 
What are some of your challenges you have had? 

What is your profession/job now?

What advice would you give to someone who was just diagnosed with TS?

Tell a story of when someone had a reaction that you did not expect 

Tell a story about a time when your TS caused a particularly funny, interesting, upsetting, or surprising situation.

What would you want other people who don’t have TS to know about having TS?

Anything else you want to say about having TS?

Also if you are a girl, answer these questions: 

"What's it like being a girl and having TS?" 

"Do you think it's important to let others know that girls have TS too? Why?

Add in anything you think you should say about being a girl and having TS!

My New Hitting Tic

My newest tic is a rough one I have to admit. I've had it for three days now and it's not the easiest to deal with. I hit myself in the chest with my hand which makes a loud slapping noise and I also have a fairly loud vocal tic that usually happens at the same time as well. Besides leaving my chest sore, it's also made my friends jump a few times because it's so sudden, loud, and forceful.

It hasn't stopped my from having a good weekend though or doing the things I normally do. On Friday I went to an outdoor concert on campus with five of my friends and today I went to an on campus carnival and went shopping at the mall with two of my friends. I was doing my new tic at pretty much all of these events and although I got quite a few stares, I'm used to it for the most part so it didn't bother me.

I also felt a lot more comfortable and okay with the fact that I was ticcing a lot in public because I had my TS medical ID card with me. I haven't had the need to pull it out or use it in any other way yet because no one has approached me about my tics in public, but I still felt better having it. I knew that if I needed to, I could pull the card out and also explain my TS verbally and they would understand or at least leave me alone. Knowing this made my confidence lever better than it would have usually been in public this weekend which was really helpful.

I don't know how long I'll have this tic and I'm not too thrilled with going back to classes on Monday with it, but I know my classmates and teachers will understand. They have all been so understanding and make me feel comfortable in the classroom regardless of my tics.

Also this is kind of unrelated, but on Friday one of my friends commented on another tic that popped up and told me it was cute and she liked it. It was a vocal tic where I said "rawr". My other friend said I should do it in class, and I laughed and said I probably will end up doing it in class at some point. I like when my friends are able to talk with me and make light of my tics. It makes me feel like it's not this big elephant in the room. It makes me feel like it's something we can talk about and it's not such a big deal.

A bad week of tics and telling more people about Tourette's

My tics have been really bad for the past week or so. The stress of the start of the semester, being in all new classes with all new people and having to explain my Tourette's to them all makes my tics so bad! Right now just about everything is setting them off, including the awful cold I have....perfect timing. I'm also supposed to be doing sorority recruitment which is another thing that's making my tics worse. Today though with my cold, my tics, the total over stimulation caused by the cheering and screaming and crowded rooms of recruitment, and the fact that I was feeling feverish earlier, I had to leave recruitment after about half the day and come back to my dorm. I feel like i'm missing out, but I really didn't have a choice.

Last night, I went to our last sorority recruitment workshop and our pledge family gathering. I stuck through all of that even though it proved to be too much for me. At the recruitment workshop I was ticcing so much. My grand big sister is the sweetest person ever and kept checking in with me at various points during the night when she noticed me ticcing a lot to make sure I was okay. Each time I told her I was fine, even though I was really pushing my limits by not stepping out of the room to take a sensory break and to fully let my tics out. I told my grand big and my big sister in my sorority about my Tourette's during this recruitment officially, even though they both had already suspected I had it. It was interesting because for the most part I tend to tell people about my Tourette's before they notice my tics or after they see just a few of my tics, but for my big and grandbig I had kept it from them for a long time. I have always been very afraid to tell people in my sorority for some reason. Anyway they both had seen me ticcing far to often in the past so they wouldn't have really asked about it on their own, but I thought that they should know since I was getting so close to them. I told my big when we were walking to get lunch together when I was ticcing a lot by saying in a light hearted way "Walking long distances in the cold always seems to set of my tics. Have I told you about my tics before?" I knew I hadn't told her about it obviously, but it just seemed like a light hearted way to say it and not make a big deal about it. She said "no" and so I proceeded to tell her. Then she told me she had noticed them before in psyc class when we sat next to eachother which is interesting to hear because while I of course know that my tics are very noticeable to others, people rarely say it out loud.

Then I told my grand big in a quick and joking kind of way a few days later. My grand big and big were both upset about how some things were being run in sorority recruitment so I made a joke that both my big and I could get out of recruitment if we wanted to because of our medical issues. My grand big then said "Right, Jen has Chron's disease..." and I added in "and I have Tourette's Syndrome, but I don't know if you knew that already". She responded in a similar way my big did by saying "I know. I've spent enough time around you to know." This caught me kind of off guard. I was expecting her to say that she didn't know, or maybe had noticed but didn't know what it was. I'm glad though that she had enough previous knowledge about what Tourette's was to identify my tics for what they were. Not very many people can do that! She said it in a way like it was no big deal and then we moved on. I really liked how she handled it. She seems to handle everything so well.

Anyway back to the first story, when I had pushed my body way to far, I stepped out of the room and sat outside and let my body throw its little fit. My body was jerking out of control and my vocal tics were nearly constant. I prayed no one would walk by because I didn't want anyone to see me like that. Eventually my body calmed down, but I was probably sitting out there ticcing like that for at least 15 to 30 minutes. I know that might not seem that long to you, but when your body is jerking at a constant rate for that long it's really exhausting. When I had calmed down, my friend Roxy walked by to go to the bathroom. All I was thinking was thank god she didn't come by 5 minutes earlier. When she came out she could tell something was wrong so she sat with me and talked with me for a few minutes. I told her I was just taking a little break, and she didn't ask about it further. Then she asked if I wanted to go back in and we went back in together.

I debated whether I should skip out on the pledge family dinner in order to give my body a rest, but I decided that I really didn't want to miss it and that I wanted to bond with my pledge family. So I decided that I was going to make a trade off. I would go even if it meant ticcing in front of them. I am hardly ever afraid to tic in front of people, but like I said my sorority has challenged my ability to be okay with my tics. In a social environment where it's about fitting in a lot of the time, my tics stand out so in the past I have tried my best to hold them back in front of my sorority sisters. During recruitment though because I was spending so much time with them, holding my tics back for that long really wasn't an option for my body if I was going to participate in recruitment. So I told my self what I usually tell myself in these situations which is something along the lines of "I can't help it, I have a neurological disorder, and if they don't accept me because I have a medical condition that I can't control then they aren't worth my time anyway." So I have been ticcing around them all a lot more. I have told a lot of them about my Tourette's, and I have been plesently surprised. They have all been accepting, which deep down I already knew. So I went to the pledge family gathering, I ticced a lot, none of them asked questions, the night was good, and they all made me feel like I was part of the family. It was so sweet how one of the girls in my pledge family assured me I would be one of the girls to get a little sister and that she would personally make sure of it! It was also so sweet how when I told her that I had run for activities chair and didn't get it she suggested that I might be able to take over alumnae relations chair when my grand big graduated. She told me she would personally push for me to get the position since she has some power in the sorority. Overall it was a great night even though my tics were bad, even though I had pushed my body too far, and even though I had a cold. My grand big kept checking in on me to make sure I was alright, wasn't too tired, and didn't need to go home yet. She is so sweet to look after me like that. She truly acts like my big sister and the fact that she and a lot of other people in the sorority officially know about my Tourette's doesn't change how they feel about me or act around me. I feel so glad that I opened up to them and participated in the weeks activities. It would have been so much easier to hide in my room all week, but I am so glad I participated in recruitment even though it meant my sisters would have to see my tics at a more intense level and even though it meant I would have to tell a lot of them about my Tourette's.

Tics and Anxiety Interfering with A Participation Assignment

Today in my poetry class it was my turn to lead class discussion. Everyone in my class had to lead discussion one day and then we would receive a grade for our discussion that we lead. I was already nervous about this because I had overheard two people in the class saying that the professor had given them really bad grades on this assignment. So today I went into the discussion feeling very nervous. I was extra nervous knowing I have already had some issues with this professor and my Tourette's/accommodations.

Participation in class is definitively a weak point for me because of my anxiety and tics. I am good at everything else, just not class discussion/participation. I tried my best to hide my anxiety, but my ability to lead the discussion was highly affected by my anxiety. The first half was already shaky seeing that my anxiety was so high, but then about half way through my body reacted to the anxiety with one of my least favorite tics. I've had this tic since I was in 6th grade and it cases all the muscles in my chest and throat and around my lungs to contract so forcefully that it makes it very difficult to breathe. So in the middle of when it was supposed to be my turn to lead discussion, my chest locked up and I ended up gasping for air and having to leave the classroom. The tic calmed down once I left the classroom and started walking around and letting myself relax, but by the time I could breathe normally again and came back to the classroom, class discussions time was over and we had moved on to the writing activity part of class.

After class I sent the professor an e-mail explaining why I had to leave class (even though I already have permission to leave class at any time) so that hopefully he will understand and not take points off for my grade.

I really hope he doesn't take points off from this grade because of my anxiety and tics and the fact I had to leave the classroom during my turn in leading discussion.....but I have to say if he does take off points or give me a really bad grade, I will be taking up this issue with disability services at my school who always supports me and backs me up with anything I need really. I don't want to have to make this into an ordeal though, but because the professor is just so young and new (this is his first semester teaching), I am not too hopeful that he will know what to do with the situation/ how to grade me fairly by not taking off points for something I can't control. So we'll see about this one. All I know for now is that he has not responded to my e-mail, which is not a great sign. We'll see though. Maybe he will respond to my e-mail tomorrow.

Setting Up an Appointment with my Neurologist for the Colondine Patch (check!)

Well it's official now. I set up an appointment with my Neurologist to get information about/try out the Clonodine Patch as medication for my tics. I'm nervous but a small part of me is excited too. I am starting to like the idea of a decrease in my tics more and more. I think at first I was just nervous about the change. Now that i've had a little time to mentally adjust to the idea, I feel better about taking this step. My appointment is November 20th at 3:00, less than a month away. Wish me luck!

Called My Neurologist

Well I did it. I called my neurologist this morning to set up an appointment to get information about the Clonodine patch that helped my cousin become tic free. My neurologist technically is a pediatric neuro, but the scheduling person is going to e-mail him to see if he will see me even though I am 19. The movement disorders clinic will call me back after they find out if my old neuro will see me. 

I never thought I would be seriously inquiring into medication. I am certainly surprising myself. We'll see where this goes from here. I think I am getting more used to the idea of medication and also more used to the idea of my tics getting better. 

Busy Weekend!

Busy busy weekend for me!! This weekend is parents weekend at my university so my parents will be on campus tonight for a special parents Shabbat dinner. Then tomorrow I get to hang out with other awesome ticcers like me at a teen/young adult TSA event! Then that night I am going to game 3 of the world series with my grandparents and younger cousins who are in town for the word series from New York. Then on Sunday I'm having brunch with my grandma and my cousin who is my age and also has TS, and then I have a business formal sorority event that night. And on top of all this I have an essay due Monday! Yikes! Lots to do this weekend. Hope I can do it all :) 

On another note, my tics have calmed down a bit from a few days ago when I posted about my hitting tics. Thank goodness for that! I will need to save all the energy I can so that I can use it productively this weekend :) 

A Text that Gives me Hope About My Cousin!

I am feeling really good right now for a number of reasons. First, I am finished with all my midterms for now. I had about five major midterms last week and finished them all on Thursday. Then I got to come home on Thursday night since it's fall break and I got to spend three days at home with my parents, my dog, and my brother. It was such a nice break from all the stress of college life.

Most of all though I am very happy right now because my grandma made my night earlier tonight. As those of you who follow my posts know, my cousin who is my age and who also has Tourette's and OCD and it's other various co-occouring conditions was in the hospital for three days last week. She came back home five days ago and the day she came home my grandma told me she sounded good over the telephone but I was still not convinced. I was really worried about her even though I knew she was home. I was worried she would go back to the hospital and wouldn't be able to stay home. I was almost waiting from a text from my grandma or a post on facebook from her brother saying she was back in the hospital. I was worried she wouldn't recover and that things would just go downhill from here.

My grandma texted me tonight though and her text gave me so much hope! I have been trying to reach out to my cousin and connect with her on a stronger level ever since I found out we both have a Tourette's + (tourette's and all the co-couriering conditions that come with it) diagnosis. I thought of how amazing it was that there was someone else in my family who was my exact same age and also has Tourette's +. I thought how neat that we both are going through similar things and how great it would be if we could have a strong relationship and really be there for eachother. I had been alone for so long with my struggles, had had no one to talk to about what I was going through, and felt like no one understood me. I thought if she felt anywhere near the same way that I did that she would want to have someone to talk to and confide in as much as I did. It would have meant so much to me to have someone like that in my life when I felt like no one around me could understand. It didn't quite work out though. I'm not sure why. I reached out to her at first and we had a huge heart to heart conversation over text. I felt like finally I was going to have that person in my life who would understand me, but somehow the closeness we had those few days when I told her about my diagnosis did not transfer to closeness in real life. I wasn't sure why, maybe it was my fault. Maybe I didn't communicate what I felt in real life as well as I did through text. So we took a break from talking for a while, and only saw each other briefly at family events.

Over the summer I really wanted to get together with her and talk with her because I knew she was going through a rough time. I wanted to be someone who she could trust, confide in, and talk to. I wanted to be there for her when she was having a rough time just like I would have wanted someone to be there for me when I was going through my rough time. We both know what it's like to struggle as a result of Tourette's and it's co-occurring conditions. Although I don't know the specifics of what she is going through, I have gone through a lot of hard times myself and I know what it's like to go through those hard times alone. I know what it's like to have those who love you surrounding you but still to feel like they don't understand and you can't talk to them about what exactly is going on. I don't think she was ready though to connect with me at that point and time because of what she was going through. I know what it's like as well to be so overwhelmed by everything that anything else on top of what you already have to deal with, even connecting with someone who is trying to reach out to you, would be too much.

My grandma's text tonight is the first thing that's given me hope in a while that we will be able to connect and form that relationship that I always hoped we would have,  She texted me ironically while I was in the middle of writing a poem for my poetry class about my Tourette's. The texted me and said that she had talked to my cousin and she is doing very well and that they had talked about the three of us having brunch on a sunday (my grandma, my cousin, and me). This made me so excited! The idea that she is actually wanting to get together with me and hopefully having my grandma there with us will make her more comfortable because she has a close connection with her. Then she said something that really told me that my cousin is actually doing really well! She told me that my cousin had mentioned today that she wants to go back to camp twitch and shout and be a counselor there. This is huge! And I mean really huge! The fact that she wants to go back to camp and be a counselor tells me that she is actually doing  really well and not just putting on a happy face for her grandma. This makes me think that going to the hospital was a good thing for her. I think things may be turning around for her for the better if she really is considering going back to camp! It would make me so happy to go to camp with her and to both be counselors there. I know that that would make us closer than anything else could. Maybe if we both went to camp together, we would finally have that relationship that I have been hoping we could have. This made my night! I wish my cousin knew I felt this way. I may text her and let her know that I am so happy to hear she is doing better. Even if she doesn't respond to my text message, hopefully she will get it, so at least she knows how I feel. I think she knows somewhat that I really care about her though because I know my grandma has told her that.

Post from Last Week: Joining my College's Disability Awareness Campaign Club!

I joined my college's disability awareness campaign/ club officially yesterday and attended their first meeting! I'm very excited to be involved with this and am looking forward to helping plan their events. Our next event is in November and we will be showing a disability related movie (yet to be decided on yet. we will do that at our next meeting) on the campus in a popular hang out area called Ursa's. I'm excited that i'm getting involved with this and that my university even has this club/campaign. Gives me hope! 

Tourette's Poem: Not Letting Her Go

Hey guys! Here is a new poem I wrote for my poetry class about Tourette's. The firrst part of the poem is based on and about when I was holding a young girl's hand at camp twitch and shout who also had Tourette's and I felt like I was holding the hand of a younger version of myself. The second part of the poem is based on this video I have of myself ticcing in dance class from when I was little: http://www.youtube.com/watch?v=9kbKhUk2GsU 

Not Letting Her Go

Passing by the gates of the pool her hand was in mine
squirming like a wet fish.
She bounced as she walked,
her bare feet playing games with the freshly
cut grass that smelled like broken avocados
and dusted peanut shells to me.

She tapped her fingers against my palm like a song
and I held her hand tight so she wouldn’t run.
It was my first time holding a hand so small
a hand so much like my own and
I didn’t want to let her go.

She didn’t know my fear yet.
She didn’t know the fear
burning blue like sulfur flames
pulling air from my lungs,
the fear that suffocates.

I didn’t want to let her go.

It would come later, this knowing,
later when she watched the videos
that her mother had filmed of her in dance class
wearing the pink leotard, the black tutu.

Standing in the line with the other girls,
they would be singing and blowing kisses,
spinning in fluid motions like little pink
wind up dolls in painted music boxes
and she would be trying,
trying to be that little pink wind up doll too.

But she would be interrupted,
interrupted by her own eyes that couldn’t help
opening and closing,
opening and closing.

Interrupted by her hands that were no longer
gracefully rising and falling
but instead had found their way up to her face
on their own,
instead were hitting themselves against her cheeks
and her mouth
and her tongue.

She would taste the salt of her hands
unexpectedly.
Her palms would taste sour like grapes
picked off the vine, still small and green.
Her lips would pucker from the taste
and she would wonder
why she couldn’t keep dancing
why she couldn’t be that wind up doll in the music box.

Then her legs would tighten,
she would fall,
unwillingly,
crumple beneath the weight of her moving body
and the other girls, they would look
and she would feel
ashamed.

Having to Convince Myself that Others Do Not View my Negatively Because of My Tourette's

Today my creative writing seminar had a guest poet, Professor B. She is such an inspiration! I love her poetry and how she explained her process of writing and the different ways she goes about writing poetry. After listening to her speak I just wanted to go back to my dorm room and write poetry, but unfortunately I had a lot of homework and studying for classes that I just now finished. Anyway, as I mentioned in a previous blog, my creative writing seminar professor e-mailed me about if I would like her to inform guests about my Tourette's. I told her that she has my permission to educate all future guests about my Tourette's and that it will be very helpful! I also gave her some suggested language to use when telling the guests about Tourette's which she found helpful as well.

She must have done a very good job educating our guest poet, for today because I had no troubles at all. Professor B didn't even bat an eye when my vocal and motor tics became pretty frequent only about 5 minutes into class and pretty much stayed that way for the rest of class. I was doing lots of motor tics, but the ones that seem to draw the most attention are my vocal tics. The ones I was doing in class today were my high pitched squeaks, a sound that sounds like "uh" "uh" or "ah" "ah", and my tic where I say "woof". I really appreciated this positive experience with a new professor who I had never even met before personally and was very impressed with my professor's ability to advocate for me so that there were no problems at all with the guest poet.

Sometimes I have a nagging feeling though when i'm having a lot of tics in a class or when I meet a new professor or adult that I haven't previously talked with about my Tourette's that the professor or adult has an automatic negative feeling towards me and my tics or is annoyed by them or doesn't like me because of my Tourette's. I think I have this nagging feeling not because it is true in any way, but because of what my parents told me around my initial time of diagnosis. They told me that I shouldn't tell anyone about my Tourette's because it will close doors for me, those who I tell will look down on me, and that it will effect the way people view me and cause them to look at me in a negative way.

 Since my initial time of diagnosis I think my parents have changed their attitude about Tourette's a lot. They now know that most people do not react in that way and it is very rare to find anyone who will react in that way. I know though that especially my mother and my grandparents, although they have made a lot of progress, still harbor feelings like this that others will look down on me for having Tourette's. For a 16 year old who was just diagnosed, hearing this from my parents was very damaging and hard to take in. It has taken a lot of time, thought, persuasion by others, and positive examples of others who have TS, and positive experiences of my own for me to overcome the effects that was caused by the things my parents initially told me.

Their words still affect me though, even now, even after I have had so many positive experiences that tell me the exact opposite of what they initially told me. I have had many professors and other adults tell me that they are inspired by my ability to advocate for myself and others, that they admire my strength, and that my Tourette's does not change the person I am. The fact that I tic, even when I am ticcing a lot, does not change who I am as a person and does not change how others view me. I have to remind myself of this a lot though and it is not something that I naturally know or feel. Since my first experiences with my Tourette's and adults in my life was so negative, I have to almost constantly remind myself of this. I frequently have to call to mind the exact positive experiences and exact positive words that others have said to me about my Tourette's to convince myself that others do not look down upon me or view me negatively because of my tics. This may also be my OCD coming into play here, especially the trying to convince myself part and having to "replay" positive events in my head as well, because those tend to be typical aspects of the mental compulsions of OCD.

 I just wish though that I knew in my heart that others do not look at me negatively because of my tics and that I did not have to try to convince myself  that others see me for who I am and not just for what I have. I feel like I know intellectually that it's not true that others see my tics and my Tourette's as something negative or look down on me for it, and I have so many experiences that confirm this. I just wish I knew this with more conviction emotionally as well.

My Cousin is Back Home!

My cousin came home from the hospital tonight! She is at her dad's house. My grandma talked to her on the phone and says she sounds good. I don't know anything else besides this really, but I am so glad she is no longer in the hospital and is in a much better emotional state. I am so glad she is doing better. I was worried that she would be in the hospital for a long time or not be able to get out for some reason. My anxieties about this have been quelled and I really really hope that things only get better for her from here! Thank you all for your thoughts and prayers :) 

My Cousin Needs Your Thoughts and Prayers Right Now

Hey everyone. Please keep my cousin in your thoughts/prayers right now. She needs courage and strength right now as she is going through a very rough time and is in the hospital because of her Tourette's/OCD/Anxiety/Depression. She is going thorough a lot and while I do not know the specifics, I do know she is struggling. I'm worried about her and am keeping her in my thoughts and prayers right now and I am asking you to please do the same. I was just updated by my grandma that she is doing a bit better and is in a better emotional state now, but she is still in the hospital and is still going through a difficult time. My grandma says that we are lucky to have such a close and caring family during these difficult times. 

My cousin is someone who I really care about not only because she is family and because I feel like I know at least some of what she is going through based on my own experiences with TS/OCD/Anxiety, but also because I know beneath all of the things she's had to deal with she is a good and strong person who just needs some help right now. 


I often wonder what leads a person on their path of life? We were both born into such similar situations, such similar lives, and with such similar genetics and disorders. We both are the same age, both have TS/OCD/Anxiety, and both come from similar families. Why does she have to struggle so much and feel so hopeless, while I am able to attend a highly rigorous university and feel like I have so much to live for and so much to be hopeful about? Why do I feel like I am exactly where I want to be in life while she cannot get to a place where she feel this way? 

I want her to know how much I care about her, although I am not sure that she knows this. I want to be able to reach out to her and help her even though my attempts to reach out to her in the past haven't really worked out. I wish I could be there for her and be a person she could talk to who understands some of the things she is going though. Someday maybe we will have this kind of relationship, but I really am not sure that will ever happen.

I just wish she could be in the place where I am now in my life. I wish she could feel the hope I feel and know that no matter what you have or what you have to do through on a daily basis with the cards you've been dealt, you can have a fantastic life and there is so much to be grateful for. I wish she could know happiness, success, and hope.
 
Once again please keep her in your thoughts and prayers. I would really appreciate it.

This is a picture of us together when we were little. We used to love to play Polly Pockets together. We both look so happy together in this picture. I wish things could have stayed this way. Who would have known things would be so different now?