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52 Weeks of TS: Week 23

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 22 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Why are we all so self-conscious? Maybe we are not all self-conscious, but I do have to say I still am. I guess that in all actuality I am still somewhat new to this. Remember, I am still only about five years fully out of the TS closet. Even though I have achieved so much in the TS community in those past five years, I still constantly feel judged.

I have a lot of respect for all those children out there who speak out and are open about theirs TS, but I still know there are so many children out the hiding and crying in corners. I’m glad I finally opened my closet door, because I have had the chance to reach out to many of those kids.

Most of what I do is somewhat for myself, to help me accept my condition, and to learn more. But the real drive behind all my motivation is the kids. In the past few months, I have met children, or parents with TS and have been able to guide them into a community that will help them grow and learn more about their disorder.

However, there are so many more still out there, confused and asking themselves, “Why am I doing this?” and still no one around them is educated enough to tell them. Even though some studies say TS is hereditary, that doesn’t mean that the person in the bloodline is even aware of what they have.

I started having tics at around 10 or 11 years old and was not diagnosed until I was 18, but I still don’t know where it came from. I could possibly see it in both my parents, but with both of them past on, I still don’t have an answer. Maybe in the future the answer might come out, but I hope not, because that means it will come out in one of my nieces or nephews. I could not imagine having one of them being diagnosed with this mysterious syndrome, and nor do I wish it on any of them, but if they were, at least they have me here to help guide them along.

This week was a great week. The TSA-NYC had our annual fundraising gala, which was a huge success. Everyone had a great time, and won some great prizes. I met a couple of new friends who are fans of my blog. It was great to speak to people and get their feedback on my work. I also meet a great kid who wants to get more involved with the TSA.

We honored the great Sue Conners, Author of “The Tourette Syndrome & OCD Checklist”. I also had the honor to interview her for the TSA-NYC newsletter. Sue is an amazing woman, and if she is ever in your city, I strongly suggest seeing her speak. Sue also runs a weekend camp in upstate NY called Ticapalooza, which I have been trying to find out more information on so I can try to volunteer this year. During our interview, I was asked to participate. I’m so excited. I know spending a weekend with a bunch of other adults with TS, and kids, is going to be a very inspirational event in my life.

This week I tried yet another attempt at reducing my tics. I did four days of the master cleanse. Not that I have heard anything about the cleanse, and the reduction of tics, but I figured I would give it a try. The whole point of the cleanse is to clean out your system of all the nasty toxins we take in, and I thought clearing these toxins might reduce my tics. Once again, another failed attempt, but I am glad I cleaned out my system. This cleanse is nothing new to me. My husband and I try to do this cleanse once or twice a year, but I’ve never paid attention to the results with my tics in the past.

My endless search for something to help is just that, an endless journey of dead end roads. Will I ever figure out something that helps? It’s a frustrating battle, and I’m sick of the pain. My shoulder still hurts, and with my arm tic I hit myself in the private area this week, which was not too pleasant. I’m not considering this a new tic, it was just where my arm landed when it decided to slam down.

I’m starting to get ready for some time away. I’m getting somewhat nervous, and dealing with an increase in anxiety. I’m leaving for two months and there is just so much to deal with before I leave. I keep on making list, but they just seem endless. I might finish two things on the list, but I add four more things that need to be done. Will it ever end?

I’m also getting nervous about being out of my comfort zone for so long. I know how to deal with my tics in NYC, but being in a new place for so long is going to be hard. When and where am I going to be comfortable enough that I don’t have to suppress my tics? I will be staying with my cousin, but still, I sometimes feel like a burden.

My husband knows how to deal with my tics, anxiety, panic attacks, and especially my OCD. I’ve spent a lot of time there, just not all at one time. Maybe this will be the time to up my Klonopin and try to relax myself a bit more. Lol, is it really possible to relax myself? I guess we will find out.

Maybe that’s what I’ll try. I keep on looking for different ways to reduce my tics, maybe I need to find a way to reduce my anxiety. I mean, it’s true, anxiety triggers my tics, so maybe the key is to reduce the anxiety. The bonus is that I will be in a relaxing beach town. This is where people go to relax, but will it help me relax? That’s the question. I am actually going out there just for the weekend this week, so maybe I will search out ways to relax. Wish me luck, and try to do it for yourself.

Until next week, “I’ll tic to you later.”

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