52 Weeks of TS: Week 17

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 the first 16 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

The brain is often compared to a super computer — the body’s computer, which not even the smartest person has been able to duplicate. Computers get viruses that attack their systems, and just like a computer my brain has a virus called Tourette Syndrome. I’m not saying that Tourette syndrome is a virus, I’m just trying to explain how I feel. I feel like there is a virus attacking my computer/brain, and no one has developed an antivirus. Computer specialists find antiviruses for computers just as fast at the virus is released, but we are still here waiting for some type of fix for our body’s computer.

Doctors try to give us a pill. Is this our antivirus? Well let me tell you something, you had better get back to the drawing board because it’s not working. I’m on Week 4 of my medication trial, and honestly I don’t feel much of a difference. As I have described in the past few weeks, I have been off my normal schedule, working on many different and stressful freelance jobs.

This week I am finally starting to get my normal schedule back and this is also the week that I have reached my full-prescribed dosage of my Klonopin. Three .5 mg pills a day, one when I wake up, one in the afternoon, and one at bedtime. Guess what? I feel the same, I’m still as anxious as usual, and crazy stressed out.

I was somewhat hopeful that this new medication regimen would relax me without making me into a walking zombie. I’d love to be more relaxed but I really think it is impossible with anxiety disorder, and I’m really getting sick of people telling me to, “Just relax!” I swear one more person tells me to relax, I’m going to punch them in the face.

Imagine you’re stuck in traffic on your way to the airport and you’re cutting it close to missing your flight — that’s how I feel. Imagine you’re strapped to a bungee cord about to jump over a bridge to the rocky cliffs below — that’s how I feel. Imagine that second before you’re about to get into a car accident — that’s how I feel. It’s a non-stop nagging feeling that won’t go away. Twenty-four hours a day, I’m always worried.

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52 Weeks of TS: Week 16

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 the first 15 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Here we go. I said last week that this week would be an interesting and special entry. I didn’t quit smoking once again, but I’m conquering some fears — or at least trying. I’m on a four-hour bus ride to Boston from New York for work. I have practically bathed in Purel and Lysol, and have taken extra Klonopin.

A gentleman sat down next to me and within about five minutes, I warned him I have TS, and besides the four-hour bus ride, he will also have to deal with my ticcing. He was actually very responsive and thanked me for my honesty. Suppression is usually our first agenda, but not today. I’m completely out of my comfort zone. There will be no suppression on this four-hour bus ride. I’m just pretty much praying he doesn’t start sneezing, or coughing.

I’ve done this ride dozens of time, but always in the comfort of my own car where I can tic with no problem. We’re ten minutes into the ride, and I have an overwhelming feeling to just burst out crying. We’re actually going to pass by my house in about 10 more minutes, and I’m trying to control the urge to just get off of the bus, get out, and go home, but I won’t. If I do that, I’m just giving in to my disability. I think I’m going to try to channel that super hero inside of me and make my way through this.

I’m trying to suppress my tics as much as I can, I mean I don’t want to punch the guy next to me. My neck shoulder and throat clearing are the ones I really can’t suppress, so those are the ones he has to deal with. In all honesty, I could of just triple dosed myself on Klonopin and passed out, but I think writing about my experience will be more interesting — especially for all of my readers.

Speaking of Klonopin, I guess the big question on hand is, three weeks of medication, but are they working? It’s still somewhat hard to say. This week has been so crazy with work I’m confused on what I’m actually felling. This week I have been doing a freelance job doing hair for a musical. Besides being a very stressful situation, I’m also just overly exhausted.

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52 Weeks of TS: Week 15

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 the first 14 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

So I guess this week is really like a results show. How was my week with my new medication regimen? Did my tics change with the void of smoking? Did my new work out schedule change anything with my tics and anxiety? These are all difficult questions to answer, especially after only one week. I’m sure with all the changes going on in my body it will take time to see any results, and I’m well aware of that.

I guess I can start by saying that as for the quitting smoking, I’m a failure. I did not quit. I will be 38 years old this year and I have been smoking for almost 20 years. About five years ago, I did quit cold turkey for three years. I can’t really say if I noticed any differences in the tics at that point, but I wasn’t really paying attention at that point.

When I quit five years ago, I read a book “The Easy Way to Quit Smoking” by Allen Carr. The book points out many facts of smoking, and is almost like a hypnotism book to make you stop smoking. You read the book, and by the time you finish the book, you don’t want to smoke again. For me, the book did what it said it would. I quit for three years.

As I said last week, there are many studies out there that says, nicotine helps reduce tics, but nothing is actually proven. This concept confuses me seeing that nicotine is a stimulant and studies say that stimulants actually trigger tics. Is there anything out there that will actually help us? I guess we all just have to try different things for ourselves, but I am going to make another attempt to quitting smoking this week.

Maybe next week I will actually have some more info for you. I have been smoking for so long, and honestly, I HATE it. It’s gross and expensive, so I hope to not let you down and actually defeat the nicotine addiction and say farewell to the evil beast.

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List of all NJCTS webinars, including August 13 on 10 ways to make a great school year

THIS WEEK’S WEBINAR

10 Ways to Make a Great School Year

August 13, 2014
Presented by Dr. Michael Osit

Along with an extremely early Labor Day comes a rapidly approaching return to school for your children. Some of you might be dreading it because there are homework, scheduling and chauffeuring challenges that accompany the school year. Others are excited both for your child’s new adventure in learning and for the ensuing break you may need from them. Either way, there are 10 things you can be doing over the final few weeks to help ensure a great school year.

REGISTER FOR THIS WEBINAR »

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52 Weeks of TS: Week 13

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 the first 12 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Me: I can’t breathe, not sure if I want to scream, or cry. Oh, hello panic attack, nice of you to stop by.
Panic Attack: No problem, I thought I’d stop by and stand on your chest.

Can that sum up my week? Yeah, somewhat. I have a problem saying no, I say yes too much. Sometimes I think I am a super hero, and I’m able to do everything, but I can’t, and I have to face the fact that I need to learn how to say no for my own sanity. I keep on saying yes to different people for different things that I end up giving myself a panic attack.

Why do we find it so hard to say no? It has one less letter than yes, so you think it would be easier. At least I’m not blaming any, or everyone else. I know it’s my own fault, but every time I say yes to something I feel like it’s a whole other planning process. More for my screwed up mind to organize and I get to a point where I feel like my head is going to explode.

I think that’s another one of my problems, organization, it’s one of my OCD’s. No matter how organized something is, it’s not organized enough. I organize everything, time, bills, events, clients, work, books, and food. Oh the list can go on. The problem is that there is no time to rest. That annoying OCD works 24/7, I’m tired and all I want to do is rest, but my mind won’t let me.

This is where the good old chain reaction comes in. The OCD triggers the anxiety, and the anxiety triggers the tics. Round and round the wheel spins. STOP!!! I want to get off this ride. But wait a second, why do I say yes? I say yes because I want to, I want to bring happiness to others however I can.

So yes, I will come out to Brooklyn and do your hair, yes I will design the hair for a show in two weeks, and why not? Sure I can do the TSA national walk, and yes I’m going to continue writing about my life every week, letting you into my life with TS!

If I really look at it, there are definitely things I can stop saying, but why stop saying yes? Yes is a positive word and no is negative. I don’t want to be a negative person. What I really need to stop saying is sorry. I paid close attention to how much I say sorry about my tics, mostly in public, or social setting, but I apologize for my tics all the time. Why do I do this? I’m not sorry!

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