A mentorship relationship has changed my life

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 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.

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How CBIT has helped me and my tics

OK, so I promised I would write more about my experience with CBIT. 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 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 rearrange 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!

So today when looking back at blog posts I came across a list of my tics that I wrote down back when I was in my junior or senior year of high school (about 3 years ago). What I’m going to do is I’m going to paste that list here and I’m going to cross out all the tics that I no longer have.

Some of these tics have just gone away because of the fact that tics come and go, but others have directly gone away because of the work I have done through my CBIT therapy. So here we go! Let’s see how many tics I’ve gotten rid of!

  • Eye rolling to upper right corners
  • Fast blinking
  • Hard blinking/squinting
  • Hard blink and hold eyes closed in a squint as hard as possible for 3 or 4 seconds
  • Grimace with mouth combined with eye blink
  • Pursing lips silently
  • Pursing lips to make a slight and quiet kissing sound
  • Lifting upper lip
  • Pouting lip
  • Slight raising of lips into fast smile
  • Sticking tongue out
  • Chomping teeth
  • Opening mouth really wide (looks like a silent scream)
  • Twisting lips to the left or right side of face
  • Entire face squint (just-tasted-something-really-sour face)
  • Slight neck bend to left or right side
  • Neck turning which results in neck cracking
  • Violent head/neck jerking forward
  • Shaking head fast from side to side
  • Bending head backward

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Happy Valentine’s Day!

Happy Valentine’s Day everyone! What are you doing to celebrate? I’ll be spending Valentine’s Day with my amazing boyfriend who accepts me, tics and all. Although I haven’t been ticcing around him a lot (a combination of suppressing and the fact that my tics have decreased a lot because of CBIT), he knows I have tics and it doesn’t change his opinion about me.

Yesterday he gave me an amazing compliment! I was telling him about volunteering with the kids at the hospital and how they seem to like me and he said, “Of course they like you! You’re so laid back and sweet. You’re the kind of person who a child would naturally feel comfortable with and open up to”. I so appreciated his compliment! It made me feel great and so special. πŸ™‚

I finally told the guy I’m dating about my tics!

Well, I finally did it! I told the guy i’m dating about my tics. It’s a GIANT weight off my shoulders, and it ultimately wasn’t that big of a deal at all. I told him last night very casually while talking about camp.

We sat down to eat some dinner and when he asked how my day was I told him it was great because I sent in my application for my 3rd year as a counselor at the camp I’ve been volunteering at in the summer. I had told him a little about the camp before, but this time I went into more detail. I told him that I’m looking forward to seeing all my campers who i’ve made such close bonds with. I told him that I bond with them and they really look up to me because I had tics when I was younger too, know what it’s like, and am able to give them advice and be an older role model who has been though what they’ve been though.

I also told him that I still have tics, but i’m able to suppress/hold them back more than I was able to when I was younger. I told him that it’s like a cough or a sneeze, you can feel it coming and hold it back. I told him it’s kind of like when you’re in a movie theater and don’t want to make noise so you try not to cough, and then when you get out of the theater, you just cough a lot! He said he didn’t know it was like that. I told him that’s why he hasn’t really seen me do any tics and he agreed that he hadn’t noticed anything and said he didn’t know I had tics.

He was really great about everything I told him about my tics. He was very understanding, very positive, and even asked me a question ( I love when people have the courage to ask questions, instead of just sit there, smile, and nod). He tried to be compassionate and sympathetic by telling me that sometimes his eye twitches so he knows what it’s like to not want other people to see that, but that ultimately you can’t control it, so you shouldn’t be embarrassed. He also said that he understands that people might judge you when they shouldn’t because you’re twitching or moving , but they shouldn’t judge you because its not something you can control.

When I was telling him I made sure to stress that it wasn’t a big deal, that my really good friends who’ve seen my tics a lot say they don’t even notice it anymore and I also made sure to tell him it’s made me into a more compassionate person and understanding others’ differences.

After I told him, we studied together and when it was time to leave, I walked him out, he kissed me goodbye, and told me he would text me the next day. Sure enough, he texted me today and asked me if I wanted to go out to dinner with him. Dinner tonight went well and I felt much more relaxed around him.

I am so glad I told him. I feel like now I can be so much more invested in the relationship and be myself more. I also now know that he is accepting of the fact I have tics and still wants to go out with me. It’s still going to take me a while to actually feel comfortable ticcing around him, but i’m getting there!

This was a huge step for me, and I’m so glad it turned out so well. Thank you to everyone (shout out to Brandy especially!! You helped me so much in terms of taking this step!) for supporting me through this and helping me to have the courage to tell him. I feel so relieved and happy. Everything in my life is just going right! πŸ™‚Β I am in such a good place right now, I couldn’t ask for anything more. I feel so blessed! πŸ™‚

I SAID YES!

Last night the guy I have been going on dates with asked me if I would like to go out with him officially. I said yes! πŸ™‚

So now I can say that we’re officially going out and that for now I am no longer single. I like so much about him. I really like how open he is with me and that he is not afraid to show me who he truly is. I also really like his personality in general and how he is a really great conversationalist.

We always have something to talk about and it’s always engaging and thought provoking to be around him. I like that he wants to spend time getting to know me and he really seems to like me. He gives me so many complements and tells me how cute I am, how much he likes spending time with me, and how happy he is that he met me.

Today he opened up to me about some things that were more on the personal side, and even though I was hesitant to, I opened up to him more too. I told me that I have sensory issues and OCD traits. He seemed really OK with it and didn’t seem to think much of it at all. It didn’t seem to affect how he feels about me and after I told him that he asked me to get ice cream later tonight and hang out more.

This gives me more confidence that if I told him about my tics, it wouldn’t affect how he feels about me either. There is still that nagging thought in the back of my head though, that fear that he will not accept me. I know it’s just the fear that has been instilled in me by my parents that is making me feel this way. I know intellectually that he probably won’t reject me because of my tics. The fear and the emotion is so real though. I think at this point I just have to take a leap of faith and plunge off the diving board. I think the sooner I make the leap, the easier it will be to be myself around him.

I’m not sure when exactly i’m going to take that leap and tell him, but I am hoping I will have the courage to do it soon, maybe even tonight when we get ice cream together. I plan on telling him in a very casual way and not making a big deal about it. I’ll keep you guys updated on what I decide to do! Please wish me luck! πŸ™‚

OCD IS REAL!!!

It hurts so much to be told by the ones who you love the most that your OCD isn’t real and you should just “get over it”. It hurts so much when I try to explain that OCD is just as real as any other disorder and when my mom tells me that that’s complete BS. She screams at me that it’s my fault and makes me feel so much shame over something I wouldn’t wish on my worst enemy.

This isn’t the first time this has happened, and I’m sure it won’t be the last, but it hurts just as much every time. Mental illness is real. I live with it every day and I know all too well how real it is.

It’s that time of year again …

Well, it’s that time of year again that every ticcer seems to look forward to and dread at the same time — the holiday season. With all the commotion, excitement, preparation and family, tics always seem to run rampant this time of year. Today is the day of my family’s yearly Hanukkah party and my tics are getting pretty darn forceful.

After 5 months of CBIT treatment for my tics, my tics have been steadily decreeing, and i’ve started to get used to having less tics. However, coming home for winter break and having the holiday season has not been great for my tics.

Being around my family members is very stressful for me (tic wise), and I’m sure those of you who have been following my blog for a while know why. For those of you who have not been following my blog, I’ll just say this: I come from a family who values perfection and social status, and Tourette’s doesn’t really fit into that mold very well. Don’t get me wrong, I love my family and I really do enjoy being home and spending time with them, but it’s very rough on my tics and anxiety.

Being in my home environment has quickly made my tics increase. When I saw my CBIT therapist last week, she immediately noticed how much I was ticcing and told me she hadn’t seen my tic this much in months. We discussed new strategies to try to decrease my tics in the home environment, such as taking “tic breaks” where I excuse myself to go to the bathroom while i’m around my family and just trying to spend less time around my family members (spending time with them in 30 min increments).

These strategies seem to be helping to some extent, but my tics are still much worse than they have been over the past few months. As soon as i’m able to escape to a place where I can let my tics out, I start having so many facial tics, vocal tics, head and neck tics, and even full body tics. The other day I spent a solid period of time parked in a parking garage kicking, vocal ticcing, and jerking my body so hard that I felt my brain rattling around in my skull and got pretty dizzy.

Right now, I’m up in my room while my parents prepare for the party. I’ve been helping prepare for the party quite a bit, but I had to escape to my room to tic and also to avoid the onion cutting. When my mom cuts onions for the Latkes for this party, my sensory processing issues go into overdrive as soon as my eyes feel any small amount of onion.

It feels as if the onions are going in through my eyes and are filling my entire head with this sour and tingling feeling. The feeling will last for hours after the onions have been cut. Even though i’ve been avoiding the downstairs as much as I can, I’ve still gotten a bit of the onion feeling in my eyes. It’s not nearly as bad as last year, but it’s definitely still contributing to my tics.

I’m having a lot of tics right now. I hope they calm down for the party, but I kind of doubt they will. Luckily one of my very good friends will be coming to the party. Having her there will help me feel better, and like the previous years i’ll be able to come upstairs with her to let out my bigger tics.

Anyway, I will probably make a post after the party is over about how it went. Happy Holidays to everyone, and good luck to everyone trying to manage the holidays with tics!

Treat others the way you would want to be treated

I know I have shared this pic before, but I’m sharing it again. How a person treats you truly reflects more about them than it does about you. Don’t ever let someone else make you feel like you are less. Instead, understand that the way they are treating you says everything about the kind of person they are.

If you feel someone is treating you poorly, trust your instincts and know it’s time for to move on and find different people to surround yourself with. Let these people you are leaving behind find someone else to put down, because trust me if they are putting you down, you are not the first one they have done this to and you will not be the last.

Thank you to everyone who offered me encouragement on my page

Thank you so much to those of you who commented on my post from the other day by coming over to my Facebook page and offering encouragement! Everyone who commented brought light to my day and encouraged me so much. I am so glad to hear that I have helped so many people though my page.

One of my absolute favorite things to hear is that a parent is sharing my posts with their child who has TS. Some of you commented to say that your child looks forward to my posts and that my posts encourage them and make them feel less alone. I cannot express how good this makes me feel and how much I love making a difference in your children’s lives.

I also love hearing how your kids are doing and about how my site is helping them, so please comment on my posts to let me know how things are going or send me a message and it will probably make my day!

Also thank you to those of you who are adults with TS who commented letting me know my posts have helped you! I love to hear that my stories and posts about my “adventures” as a college student living with TS are helpful and inspiring to you.

Today is a much better day. Even though my ticcing is still pretty bad, my body seems to be less sore and seems to have gotten used to the increased ticcing. Also my OCD thoughts are better and I’m moving though my day with a better attitude. I know that all of your comments have contributed to the fact that today has been a lot better .

Need some encouragement today please

I need some positivity and encouragement today, so if you could, I would really appreciate any comment on this post to let me know how this page has helped you or how I have helped you and your family.

I have one week left of classes, reading week and finals, which leads to a lot of stress, but on top of all that I have extra anxiety going on because of something I found out about a family member over Thanksgiving break. I can’t go into much detail about that situation, but it is pretty devastating and life-changing for this person and the rest of our family to say the least.

Yesterday and today my muscles have been extremely sore from ticcing (mainly muscle tics in bed, and even when half asleep). Every time I sneeze, cough or do any type of vocal tic, I am in pain because of the pressure and aggravation the ticcing puts on my already very sore muscles. I was sore and exhausted all day.

My best guess was that I was ticcing through most of the night and didn’t get a lot of deep sleep, hence the sore muscles and exhaustion. A few times I woke myself up from ticcing last night and the night before. My tic where I hit myself in the chest has come back as well, and that’s a rough one.

What is happening is affecting me because not only is this person a member of my family, but my OCD/anxiety is acting up about the situation as well. It’s making my OCD thoughts worse and is making my compulsions worse as well.

Even though it’s very upsetting, one positive is that it’s made me even more grateful for the life I have. It has put a lot of things into perspective and even though my tics are bad right now, I am grateful for my life, all the opportunities I have been given, and for my ability to take full advantage of these opportunities and work hard to finish my college education, apply to grad school (next year), and hopefully use this education I have been given to make a difference in the lives of others through research and clinical work in my future.

I am also grateful that I am able to make a difference in the lives of others now. I love volunteering at my local Children’s Hospital, forging long-term connections with the patients, volunteering at Camp Twitch and Shout, and making a difference in the lives of all of you through this page.

So if you could, please comment about how my Facebook page has helped you and anything else you can think of that you would like to see on the page to help further.