I don’t have anyone like me in my life

My grandma, who is one of my best friends, showed me this website. I was excited that people like me can share stories and talk about our experiences together. I longed to have a spot on the website so I can do the same!

Tourette’s Syndrome affects my life because when I was about 6 years old, my mom noticed some eye blinking and throat clearing behaviors, not knowing they were tics. It’s stopped for a while, but resurfaced when I hit about 12.

Ever since I was in third grade, I stuttered. My speech was sometimes so bad I couldn’t get out sentences. That also stopped for a while, but has always found a way to come back. Around the time my tics appeared again, my stutter was in full swing, and hasn’t stopped since. I am now 14.

My mom was worried about me and was always looking up possibilities that could be causing these tics and my stutter. She thought it might be Tourette’s Syndrome, and I was in denial. I didn’t know what to do. This went on for years — no diagnosis, bad stutter, and tics. I’ve always had Tourette’s like symptoms as well — couldn’t ever fall asleep, OCD, as well as general anxiety and depression.

All still impact my life, and it’s very hard to deal with. So this past November, I went to University of Michigan to find out what’s happening to my body. The neurologist told us that I had Tourette’s Syndrome, and having a name to what was going on felt relieving, yet, I also was at a loss for where to go from there.

The neurologist also told me that my stutter was something along the lines of a vocal tic. It’s all connected in some way. So, being on this blog website would be a release for me to talk to other people like me, since I don’t have anyone like me in my life.

I’m back!

Hey guys, sorry I’ve been gone for so long. I’ve been so busy with school and everything, but I’m back!!! A lot has gone on since I’ve been gone. I finally turned 21 in January, which is exciting!! I absolutely love being 21 — it’s so amazing! Also, I changed my major from education to just sociology.

Now, I know I said I wanted to become a teacher, but in the end, I decided that that;s not where my heart is. I honestly want to just become a motivational speaker for what I have, which is Tourette’s, OCD and Anxiety. (By the way, I love how my internet doesn’t know what OCD is and says it’s wrong, but it knows what COD is … that’s a problem!)

Along with that, I got a new therapist. Her name is Sharon, and she is incredible. She is not like a normal therapist, as she does not go by the books. She goes more by this meditation and talking to your highest self route. I’ll make sure to write another post about her and what she teaches me because it is so helpful, and hopefully I can help you guys, too!!

Um, I dyed my hair a reddish brown at the beginning of the semester, and then I just recently dyed it back blonde — I’ll show you guys a picture of how it is naturally, how it was red and then how it is now if I can figure that out!

Oh my goodness guys, I’m graduating next year! I cannot believe this!! I am going to be on my own and hopefully fulfilling my dreams! If I could become a motivational speaker that would honestly be the most amazing job in the world!!! I think I have an idea of where I want to work or how to come about that, but if you guys have any suggestions on how to get myself out there please let me know!!

Now let;s see, I’ve really gotten into the band The Neighbourhood — they’re really good, go check them out! They sing “Sweater Weather,” which is pretty popular on the radio.
Haha, now I’m just rambling. Anyways, that’s about it for what’s new right now! I will make sure to keep you updated!!

Your words are powerful!

A little more than a week ago, I participated in a Missouri TSA event called the teen panel. Basically, it was an event where we had 4 people (including me) who were teens and college students and we talked to the group of younger kids, parents and other teens about our lives with TS, our stories and what has helped and hasn’t helped along the way.

I was nervous because I hadn’t really done anything like this before, but the chair of the TSA really wanted me to do it since I’m a sophomore in college living life successfully and to it’s fullest with TS along for the ride.

I was extra nervous when I saw that the neurologist and postdoctoral fellow who I work with in the Tourette Syndrome lab at the medical school showed up to talk about a study. They are people who I really care about how they think of me and I was so nervous to talk about my TS and associated conditions openly with them in the audience.

They of course already knew about my TS, but I had never talked about it this openly with them around. I thought maybe it would effect how they think about me in the professional setting, but I went on with the panel of course and talked as openly as I could about my life with TS, OCD, Anxiety, Dysgraphia and Dyscalculia.

Both the neurologist and the postdoctoral fellow have Tourette themselves, so I really don’t know what I was worrying so much about! They know what it’s like, they study TS and they have pretty much dedicated heir lives studying TS and treating patients with TS, so really by worrying so much I was being silly.

After the panel was over and we were done speaking, it was proved to me that truly I was worrying for no reason at all! The neurologist who I work with came up to me with the post-doc and gave me a thumbs up. He told me I did a great job and then he said to me, “If there was one person I would bet on to graduate from college and do something with their life, it would be you.”

This made my night beyond belief! To have someone who I look up to and admire so much say this to me was incredible. He is someone who is so successful, he has an MD and and PHD and he told me that he believes ME, even after I spoke openly about my TS and the struggles I have gone though with it.

And on top of all that, I was ticcing A LOT when I was speaking on the panel because I was so nervous. I was even doing my vocal tics and of course my motor tics. I think this was the most I’ve ticced around either of them, and regardless they still said I did a great job and still believe I can do great things.

That one comment has made a difference for me. It has given me more confidence recently and I feel like I’m important. Never underestimate the power of your own words! They have power beyond what you think, so choose your words carefully and don’t hesitate to tell people the things you appreciate about them. :)

10 reasons I LOVE Tourette’s!

Like the title says, these are 10 reasons why I love having Tourette Syndrome! Of course, there are times when I get frustrated with my tics and wish I could just stop the things that I say and do. I have come to find reasons to absolutely love my Tourette’s and be thankful that I have TS. Here is my top 10:

  1. Something more serious is not wrong and causing the things I do. I had tics as a kid, but they reared their big, ugly head once again as a teenager and adult. They were subtle at first, but got so bad that I could not stop moving and twisting and contorting. It hurt. I had no idea what was causing me to do what I was doing. I think back now and am grateful that something more serious was not the cause of the sudden, severe outburst of my Tourette’s. I am not saying that TS is not serious. It should be taken very seriously. There are things that would have been much more devastating that my imagination came up with during those times before my diagnosis, though.
  2. It has taught me some great lessons in life, such as acceptance, kindness, not to judge people for what I observe of them. Of course, these are lessons we are all taught (hopefully) throughout our lives. However, when something like being diagnosed with a chronic illness or a traumatic experience happens to you, you tend to understand and implement these lessons in your own life even more (again, hopefully). Having dealt with mental illness such as depression and anxiety in my own life and struggled with self-injury, I had very strong feelings about not judging people by what you see or hear, but when my tics kicked in and started evolving into what they are now and what they were when they first became a real problem, I noticed the judgment and stigma around me even more. People stare, make fun, and can be downright rude at times. It can really hurt. I never want to be one of those people who misjudge someone because of what I merely observe about them. You never know why someone is doing something or why they look the way they do. Get to know a person before you judge them. You may make assumptions about someone and miss out on a great opportunity to learn, make a new friend or enjoy a great new experience that will never come again.
  3. It is so freakin’ hilarious! I have never laughed harder in my life than I have at some of my tics! In fact, I even wrote a post about funny tics and hilarious moments that have happened because of a tic! Great memories have been made because of a funny tic or situation that occurred because of a funny tic. These are memories that I will have forever. They will probably be some of my fondest, even. Continue reading

Top TS moments from the Camp Twitch & Shout counselor reunion, No. 1

These are not in any particular order! I just wrote them down as I thought of them. These are the top 5 moments that relate to Tourette’s that happened during the Camp Twitch and Shout counselor reunion weekend. Here’s No. 1:

At the end of the trip last Sunday, I was scheduled to fly back home. My plane was canceled, though, because of the weather. Luckily, though, the airport I flew into to make my connection is where Tasha lives! This meant that my trip got to be extended and that I got to spend more time with Tasha.

My anxiety went crazy, though, with having the flight canceled. When my flight was canceled and when I was alone in the airport before Tasha came to pick me up, I was shaking, having major obsessive thoughts and panicking. My anxiety is pretty irrational, but it takes over my body and mind when it hits, and it can be pretty brutal.

I called my mom and cried, but as soon as Tasha came to pick me up I calmed down pretty much immediately. I feel safe with her. So ultimately, even though I had some bad anxiety and got pretty upset, I got to spend more 1-on-1 time with her.

It was like a big sleepover! I went back with her to her apartment and she introduced me to her dog. Her dog is a Chihuahua-Dachshund mix and is so sweet! She is such a lap dog and will sit in your lap and sleep with you. She has such a personality and loves to play, too! She also understands English and listens to her owner better than any other dog I’ve met.

So we went out to dinner to a really nice restaurant talked and then when we got back we laid in bed and watched two great movies together, “Untraceable” and “The Butterfly Effect.” Kind of like how I let Tasha do my nails, even though it bothered my sensory processing disorder, she watched two semi-scary movies with me even though it bothered her OCD and anxiety.

The movies were psychological thriller movies, which are pretty much my favorite types of movies, and she really liked them even though they were scary and wanted to share them with me. We had a great time watching the movies together. Afterward she was a little scared, but she said because I was there with her she was OK.

My flight wasn’t scheduled to leave until 10 p.m. on Monday night, so that meant we got to spend the whole day together the next day, too. We slept in late, ate lunch and then watched the movie “Date Night.” Then we had dinner where we talked more, too, and had more good conversations!

She drove me to the airport and we hugged and said goodbye! She told me that she really enjoyed our time together. I often worry and obsess about what other people think of me, but when I’m with Tasha and the other counselors from camp I know they accept me — always.

I don’t have to worry that they think I’m weird or that they don’t accept my differences. They know my differences personally because they live with them every day. To them, stomping your feet on the ground, twitching your face, hitting yourself and making noises is normal. To them, going into panic/anxiety mode because your flight was canceled or having to avoid touching certain things because you think touching them will make you sick is normal.

It’s incredible to be understood on this level. Being at camp and being with the people from camp is the most understood I have ever felt in my life. I feel like they are all living my life. Even though we don’t have the same tics, same obsessions or same things that trigger our anxiety, it doesn’t matter — we get it, and we get each other.

That’s my complete list! In case you missed any of the others, here they are: