52 Weeks of TS: Week 29

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 28 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Oh to be back in New York City! Anxiety is here at full force, and OCD is crazy. What is it with this city? I’m here for a week, but I can’t wait to get back to Martha’s Vineyard. I think I need to move to a dessert island. The time I spent on Martha’s Vineyard was so relaxing, and now I’m trying to acclimate myself back to my New York state of mind. It’s hard. This whole week feels like a nonstop nightmare. I’m only here for a week, so I’m trying to get everything done that I need to. Work, doctor’s appointment, meeting, and the social events, it’s never ending.

I’m going to reflect a little on my last week’s entry, mainly my OCD’s. I complained about coming back to my house and it being in disarray. I know it was just me who thought it was in disarray, but it got me thinking. I have spent my whole life dealing with my OCD, but there are other people around me who have to deal with my craziness.

I give my husband a lot of credit to have the patience to deal with some of my weirdness. I look back and think, I have had quite a few different roommates in my adulthood, and I know they have all had to deal with my OCD. I feel rather bad for them, but I have to say, none of them have been too overwhelmed dealing with me.

Finally having some alone time this week gave me a lot of time to think. Even though I had a rather busy week it was nice to have some alone time to think. The only problem is, some of the thoughts that rolled through my mind were a little obscure.

One of my thoughts was that TS is a neurological disorder and animals have brains, is it possible for an animal to have TS or Parkinson’s? Animals get tumors, seizures and cancer like a human does, why not other things? What exactly would a dog look like if it had tic, or what would their OCD come out as? I guess it’s just one of those weird things that goes through my mind.

These strange mental journeys bring me to other places, too, the thought of the struggling countries all over the world. We in the United States have a pretty good medical institution where money is always being put into different medical studies in hopes to learn more. However, there are places all over the world where families struggle to feed their children or themselves and a medical system is close to nonexistent.

Children are losing their battles to different diseases every day, not saying that TS is a life threatening disease, well my life insurance company thinks it is, but it’s not. I think of a little nine year old in, say a tribe in Africa who starts developing vocal and motor tics. Depending on the tribes’ beliefs, do they perhaps think this innocent child is possessed by some evil spirit? What do they do about the situation?

I think it’s just that the on/off switch in my brain is broken, and I can never turn it off. I love to watch a lot of different national geographic programs and animal planet programs, and with my ADD, my mind wanders off. There are thousands of people diagnosed with TS a year in the United States alone, but what about the undiagnosed all over the world. All those poor little kids, without medical treatment, have no idea what’s going on in their heads and bodies. There could be little bunnies hopping around screaming out bunny profanities. You never know.

Anyway, I’m back in NYC. I am instantly reminded of the reason that I hate the city during the summer. I had to subject myself to the hot, humid cesspool of the city, and the crowded subway system filled with sweaty strangers rubbing their bodies up against each other with no cares. It’s so gross, and to top it off, I came home to no more Purell. Really?

I have used more than 15 bottles of antibacterial in just a few months. I’m not sure if I should be more worried about the fact I have no more antibacterial, or the amount I’ve used in such a short time. OK, maybe my OCD might be a little out of control. I did go to the doctor this week to fill my Klonopin prescription and I had a brief thought to talk about the OCD, but I couldn’t gather up the strength to bring it up.

I have been taking .5 milligrams of Klonopin for years, and actually did discuss that with him. I feel like I might be immune to it by now, so I brought that up to him. He decided to up my dosage to one milligram twice a day, so maybe that will help me relax and I will not be so OCD, but I doubt it. This is the second time we have tried the increased dosage this year. I guess I’m all right with the increased dosage of the Klonopin, but I still worry, in 20 years, am I going to be taking ten milligrams just to feel calm?

A good thing that happened this week is that I organized a TSA-NYC dinner, as part of our monthly social hour events, and it was a huge success. I love producing and being part of these social events every month. Each event, I meet another person who has been touched by TS, either having it themselves, of having a family member with TS.

Conversing with these new individuals brings a much-needed sense to each other. We’re not alone, and there are others out there going through the same things as we are. They are experiencing the same feelings and same confusion as we are. Someone who can relate to us. It’s a good feeling.

It’s things like these events that are why I got involved with the TSA. I don’t want to toot my own horn, but I have gotten many new people involved with the TSA, and coming to the social events. Meeting other people like yourself can be a powerful thing in someone’s life. With this said, I will continue to be tenacious, and will never distill my action of getting awareness out there. “We’re here, we tic, deal with it.”

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

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