To My Amazing Camp Twitch and Shout Campers

To my amazing camp twitch and shout campers: 

I know this time of year before school can be tough. I myself am having a fair amount of anxiety about starting my Junior year of college. Tics can be rough this time of year. Remember that is normal and we're all going through it with you  

You are never alone. Even though we may not be there physically, your camp family is always with you, supporting you and sending you lots of love. As one of my campers last year said, camp lasts all year because of the memories you made at camp and the support from your fellow campers and counselors who now care about you so much.

I just wanted to let you all know that I love you, stay strong, know that I am thinking of you, and you are going to do great things this year! 

Missing Camp Twitch and Shout Today :(

Missing all my campers and fellow counselors from camp twitch and shout today! Today was the first day I could even bring myself to watch the videos I took at camp. Watching them any sooner would have been too much for my post camp depression (PCD). Every year after camp I miss my girls and fellow counselors all too much after camp. This year was a bit less of an emotional roller coaster ride compared to last year, but my PCD was still strong for a little while. Thank you everyone at camp twitch and shout for all you do to make that week so amazing for so many kids. Missing you all and a special shout out to my amazing campers (you know who you are!) Stay strong, know that I am thinking of you, and good luck with starting school. I know you all will do great things this year 

My Professor this Semester is on the TSA Scientific Advisory Board!

Today I was looking around on National TSA's website and since i'm starting to look into PhD programs I was looking at the Medical and Scientific Advisory board. I was scrolling down the list looking at the various universities the board members are affiliated with when I saw the name of my university! 

The woman's picture looked very familiar too! It took me a few seconds to remember where I had seen her before and then it hit me, she's one of my professors this semester! I've never actually met her in person, but I had seen her picture when I looked up her e-mail. I'm taking her Biological Psychology class this semester and I was ecstatic that I had just come across the fact that she's on the TSA's scientific advisory board!

Well I guess this means I won't be needing to explain to her what TS is! Of course I'll still e-mail her and tell her I want to meet with her before classes start to explain my accommodations and let her know about my TS, but it will be so nice to have a professor who really understands TS and did long before she met me! This is going to make my first week of school this semester just a little easier, and anything that makes my first week even a tiny bit easier makes a big difference considering how rough that first week can be with the seemingly constant explaining I end up having to do. By the end of the week i'm usually exhausted, frustrated, and thinking "if I have to explain Tourette's to one more person I think i'm going to explode!!". Lol, I get through it every year though and this year i'll have one less professor i'll have to explain it to 

This is the second thing that's happened that's given me a really good feeling about this year. First my RA e-mails me back telling me she had a friend in high school who had Tourette's and now one of my professors is on the TSA Scientific Advisory Board! I think my first week of school is going to be a lot easier this year with all this and with my amazing friends standing by my side 

Feeling Better Thanks To A Friend

Feeling a little better about my new swearing tic thanks to my amazing friends! I was texting one of my best friends in college who is going to live in my suite this year and I told him about it. He was so amazingly supportive like always. We're going to be in a class this year together and so he texted me back saying "if you do it in class, i'll give a mean glare to whoever looks at you!" he also said "I was going to say that I would swear with you, but then I realized that would cause more problems. haha, if we aren't in class I'll definitely join in  "

I have the best friends in the world! I was feeling so nervous about starting school with this new tic earlier today before I talked to him, but now I'm feeling so much more confident and less nervous about it. Out of all the things I can try to do to make myself feel better when i'm ticcing or nervous about ticcing, nothing helps more than when other people make me feel at ease about my tics by standing up for me when people stare, joining in with me, or joking with me/making light of my tics. Accepting and supportive friends truly make such a huge difference in my life that I can hardly put it into words. Thank you to all those friends out there who are our first line in emotional support. You do more for us than you could ever imagine 

My Annual TS Message to my RA

Sent my annual message to my RA (the student who is technically in charge of our floor in the dorms) letting her know about my TS. I do this every year. My tics have never caused a problem in the dorms, but I still tell my RA each year just to make sure she is aware of it on the front end. 

I have no idea if there would have been problems or not if I had not told my RA each year about my TS, but I really prefer to be safe about it rather than putting myself in a difficult or uncomfortable situation (which has happened a few times when a professor/teacher/or other person i'm around hasn't been told about my TS). Anyway, my RA responded to my e-mail, and like all of my RA's in the past, she sounds amazing and accepting.

Here was her response " Thank you so much for getting back to me! I had a friend in high school who also had Tourette's so I am familiar with it, but there are definitely more things I can learn from you! Looking forward to meeting you soon!"

It always makes me so happy when someone i'm trying to educate ends up already having known someone with TS

CBIT for Tics

Today was my first day meeting with the CBIT therapist I'm going to work with. My neurologist recommended I try CBIT for tics before trying a different medication. I don't know if it's going to help, but i'm sure hoping so! I can tell you one thing, it was so nice to not have to educate the therapist about TS like I usually have to do! She was teaching me new things instead of the other way around. She is very kind and I really like her and her approach. I'm cautiously hopeful! A reduction of my tics would be so nice :) 

To learn more about CBIT, click here: http://www.tsa-usa.org/imaganw/CBIT_TSA_Brochure_English_web_version.pdf 

An Update about CBIT and how it has affected my tics after 8 months of therapy (on and off) (this update is from April, 2015): 

CBIT is not a cure for TS, but is has helped me manage my tics a lot better. I have far fewer days that end in exhaustion and frustration, and I have managed to get rid of a lot of my previous tics completely. Don't get me wrong, I still have plenty of tics, but I now have fewer tics and the tics I do have are less frequent, less severe. One thing that's helped a lot is having a therapist who is so understanding and who is willing to re-work the therapy based on what works for me and what doesn't. We've had to make a lot of adjustments to the original CBIT protocols because #1 paying attention to the premonitory urge for me makes my tics A LOT worse (and paying attention to the urge is supposed to be a big part of awareness training with CBIT). So we have had to get rid of that part competently, and also re-arrange a lot of other things as well. With a lot of tweaking though, we have found what works best for me! All and all CBIT has worked better and has improved my tics more than any medication i've been on and the best part is NO SIDE EFFECTS!

Now that's not to say some of the tics i've worked on with CBIT will never come back or start up again or become more active when I get stressed or am around others with TS, but in my normal everyday life I am living with a lot less tics! I'd say that's pretty darn good! The ones I am most happy i've targeted with therapy of are the ones that were painful such as hitting myself in the chest and stomach. I still have tics that get painful sometimes, but I have a lot less tics that cause me pain and they happen less frequently.

 I still have tics every day and they are still noticeable, but they are much more manageable and much less painful.

I am still continuing to work with my therapist on my tics in order to help them become even better than they are now hopefully. It's still a work in progress, but we have moved our appointments to be less frequent now that my tics are under better control and now that i'm more independent with doing my CBIT homework/ competing responses. 

"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.