Never Ever Ever

Never Ever Ever
Brad Choen

Saturday, March 29, 2014

My Diagnosis and my Doctor visit and other

Diagnosis concludes that it is Tourette Syndrome.
I'm excited to have a diagnosis. My tics have been a little enthusiastic lately. My Nerologist was SO nice. He gave me the idea to do power lifting. He says, 'this is a movement disorder. I treat it with movement.' :)
My friend and I are going to go shopping for her birthday. She has been the friend who was the coolest about my tics. She jokes with me about them, but I know she will defend me if someone takes  the joke too far. She knows the boundaries and when it's not funny anymore. I could not ask for a better friend!
I love you A.W. <3

Thursday, March 20, 2014

Good news!?

My dad finally got me an appointment with a Nerologist!
For the past week they have been saying stuff like, 'we got a referral from your primary care doctor, but nothing explaining why.'
-_-# Why do you think? I'm asking to see a specific Nerologist who specializes in TS and has TS himself... Hmmm time to call in Sherlock Holmes, huh?
But anyway, I am excited to see him. The sooner I get a diagnosis the better. I still tell people, when they ask, that I have Tourette's and... I'd really rather not, unless that's really what I have. The Nameless Disorder is harder to deal with, and live with than what I hope having a name will be.

A side note: We have a new employee at my job. We'll call him Jay. He has been really cool about my tics. Though he's never asked me and I never told him a word about what's going on, he has been really awesome. Especially when 'Mary' tells him to "shut up". I really give him props for that.

So, that's my good news. I put a question mark because some people are surprised I'm happy to see a Nerologist. Well, like I said before living with a nameless disorder is tough, and I'm hoping putting a name to it will make life a little easier. Am I nervous? Of corse! Though I am used to seeing doctors by now. I see a Tharipist/Phsycologist every other week. I see a Phsyciatrist once a month and my primary care doctor once every 2 months. Along with an occasional ER visit which is usually unrelated to my tics. (I have other health problems)
Seeing doctors regularly, I know the drill pretty well and am learning the lingo they use. I just worry he won't come up with anything wrong and think I'm making it up. I keep telling myself that won't happen because I'm not faking it. It's impossible to fake it. You'd have to focus on it 24/7. You'd have to remember to tic.
On good tic days I won't tic too much, but I have bad days where I won't hardly have a minute without it. Though it still worries me. Irrational as it may be.
Well, thanks for reading. Catch you later!

Tics in Public

I am beginning to not really like going out, purely for the looks I am getting.
I was out to dinner today with my dad, and there was three separate families aside from us and the looks I got made me uncomfortable.
The children were obviously just as uncomfortable, if not more. The parents tried to get them to ignore me, but shot me looks that spelled out, "shut up."
Which ironically was the tic I was doing. I couldn't stop yelling, "SHUT UP!" and jerking my head and tapping the table. I also yelled, "Nark." A few times.
Dad told me that if they don't say anything to me, I shouldn't say anything to them. I wanted to though. I wanted to explain to them why I was shouting and twitching. Anything to get those cold eyes to stop drilling holes in my skull.

On a happier note, tomorrow... er... Today I guess technically; my dad is going to call a Nerologist and set up an appointment. Since dad works for Aurora, and we heard of an amazing Nerologist who has Tourette Syndrome and both his children have it too, and works for Aurora; we are calling him. Of corse the only down side is he is located roughly two hours away from where I live, but hey, I heard from multiple families at a Tourette's meet-up that he is the best doctor that they had ever had, so two hours seems worth it for guaranteed good hands. 

I am very excited about this, because I am about this close to getting a name for whatever is causing my tics. Having a nameless problem is not all it's cracked up to be. I sort of feel like Wonderer/Wanda from the movie 'The Host', where she is sitting on the mountain kissing a boy and Melanie yells at her to stop. The boy leaves and Wanda is sitting there and says, "It's weird being in a body that won't let me use it." Yes it is. It sucks. 

Honestly, I don't know if anyone is reading this, but just posting my story helps me feel like someone out there, besides my handful of family and friends who are still with me actually cares. So if you are reading, thank you.

Have a Tic-Tastic Day!!!