Saturday, September 27, 2014

You Know You Live In A TS House When.....

This post is one of the lighthearted posts that I love to make! Sometimes we just need to laugh about our tics and the unusual and sometimes very humerus situations that Tourette's puts us in. These quotes come from families who live with Tourette's everyday and who know all too well that more times than not, laughter can be the best medicine :) 

"You know you live in a TS house when kid #3 keeps burping and kid #1 is getting annoyed by it, but you know #3 can't help it, so the whole family just starts burping to lighten the mood." 

"You have one kid cussing up a storm, another kid making chirping noises, and another one clearing her throat ALL at the same time, and you still manage to hear your baby nephew crying over all the other noise."

"When your son is tired of hearing all the noises and yells "Shut up! Not a tic!""

"You know you live in a TS house when one person sets off the other person & we laugh at each other afterwards."

"The pics in the living room fly off the walls after bedtime. (The thrashing at night) ...when he opened a Christmas gift in front of family that were unaware of his "cop" and screams "S*** F*** F*** D***!" Yup I'm pretty sure they still pray for me!"

"You know you live in a TS house when the neighbors think you own a drum set!! Nope, it's just the banging on the walls, table and chairs!!"

"When you walk two steps forward and one step backwards, shake your hand and do it again all the way through the house...then suddenly realize your TS daughter isn't even there!! But your so use to doing it with her it's now become your own habit!! LOL" 

"When the neighbor/ good friend( thank God) texts you at midnight asking,"Did you hear that?", only to realize you have to inform her it's your lil' ticcer banging her hands against the walls and rod iron bed as she sleeps!! She was glad to know it wasn't an intruder!! lol Nope, just the TS house!!" 
"When you grow to enjoy hearing your child tell every street sign  "shut the f--- up" as you're driving" 

"When shoe shopping for an 8 year old involves making sure the perfect pair is not too high on the ankle but not too low, tight enough but not too tight, and doesn't involve velcro - because he it not only has to have shoes that feel right but has also been known to spend over 30 minutes fastening velcro to make sure it's lined up perfectly."

"You know you live in a TS house when it always sounds like looney toons and they haven't been watched in 4+ months... "Wooo-Hoo!" 

"Asking "do you know you just said _____?" The random echolalia leads to word play and my daughter doesn't even realize what she's said sometimes!" 

"When you wake up in the middle of the night because an arm tic is knocking on your bedroom wall..." 

"When you have to Explain to offended women that "no, she doesn't really think you're pregnant, and she's not saying you're fat... She heard 'baby doll dresses make girls look pregnant' and now she can't help saying 'you look pregnant' whenever she sees one."

"When you know your a fish because your son constantly says "my mom's a fish"

"When you are greeted with "welcome to staples" when you walk into a room...When you find yourself saying "fubble nuggets", just because you got so used to hearing it."

Thursday, September 25, 2014

Talking at the Medical/Nursing School about Tourette's

Today was the day! I spoke on a panel with a neurologist and nurse to about 50 medical school students and nursing students! I was originally told there were going to be about 200-400 people there and was relieved when I got there to see there were only 50. The fact that there were less people made it easier and less stressful for me, but at the same time it would have been great if I could educated even more people. That's okay though, 50 people is a lot and educating people about Tourette's ins't simply a one day thing! I educate people on a regular basis! 

Anyway, today I was excited to help future doctors and nurses understand more about Tourette's! I got tons of great questions and answered them as honestly as I could. I talked about my diagnosis process, CBIT, medication, how I tell my classes about my TS, my experience in school with TS, and more! One lady asked me if I could drive, and even though I told her I could, the neurologist wasn't so sure that I convinced her, lol. 

Afterwards , an older man came up to me and told me that he enjoyed the talk, that he now knows TS is so much more than swearing which he didn't know before, that he thought I was really in control of my life, was doing great a great job dealing with living with Tourette's, and that he loves the way I live my life. That made my day! 

At the end, my neurologists nurse told me that she thinks everyone really enjoyed having me there and that I was really helpful. I felt really confident on stage and like I could just be myself. I'm proud of myself for spreading awareness and talking openly and confidently about my Tourette's in front of such a large group. Hopefully I made a difference :) 

Monday, September 15, 2014

Being Rejected by Someone Else With Tourette's

I haven't written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven't felt secure enough to write about it until now. It was too painful and made me too upset to even think about writing about. But it's been a full year and I feel like I have enough distance from it now and strength to let let it hurt me anymore. 

A year ago, I was a sophmore in college who had come back to school after break. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself. Of course I was coming back to incredibly accepting friends. 

On campus this year, I met another person with Tourette's. This was the the first person I had met at my college who also has Tourette's. The girl was a year older than me and I was so excited to meet another person with TS on campus! I told her I have TS too! 

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about my experiences with TS, but after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong? Now that I had opened my mouth did she think for some reason that I was just a really lame person who she didn't want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as "cool" as she is.

Later on, I decided to send her a message. This message was kind and nothing intrusive at all about TS or anything else. It was just a friendly message. Even though she had seen the message though, she never responded. When I saw her on campus, she looked the other way, and she never talked to me again. Instead she purposefully avoided me. I had been rejected for the first time since middle school and not by just anyone, by someone else who has Tourette's. It reminded me of all the rejection I had faced when I was young because I was "different". It reminded me of the girls at sleep away camp in middle school who had bullied me and made fun of me. It was very hurtful to feel these feelings again. When I told my friends, they tried to comfort me and tell me that the girl I had met was the one who was missing out. They told me I was a great friend and that it was her loss that she didn't want to get to know me. Even with their comforting words, I still felt so hurt. To be rejected by someone who knows what it's like to be different and who knows what it's like to have TS was hard.

This year, I have seen her on campus a few times already. I feel different about it though this year. There's a building on campus where I like to get food, but it's one of the buildings where she has a lot of classes and i've seen her there twice. A year ago, I would have stopped going there to get lunch just so I didn't have to see her. I wanted to hide from her. Now though, I'm not going to give her that kind of power over me. I went to get food in that building today anyway even though I knew I might see her there. I did in fact see her from a distance, but it didn't stop me or make me feel as if I was "less" because she had rejected me.

I am confident in who I am. I have so many friends with and without TS who love me, care about me, and value my friendship. They like me for who I am. They spend time with me because they enjoy my company, like my personality, and they don't mind my tics either. They see me for who I am and don't find anything wrong with that. One person, regardless of if they have Tourette's or not, is not going to have the power over me to make me feel bad about myself because i'm not going to let them.

Today I had a thought that I had never thought of before. When I saw this girl from afar I thought "Thank god it was me who she rejected, and not one of my campers". I know how strong my campers are and how resilient and beautiful they are, but it still made me want to cry thinking of them being rejected by this girl like I was. I thought of each of them and how I would never do something like that to one of them or any other child who had Tourette's or was "different" in some way. Thank god it was me and not one of my girls is all I could think. It would hurt me to much to think of them being rejected by someone else with Tourette's. I know many of them have been through what I have and have been bullied or not included by their peers at some point in their life. To think of them having to go through this and then later on as mature young adults to have all those feelings brought back by someone like them who also has Tourette's and has also felt rejection made me very emotional. I never want this to happen to them. I can only hope it never does.

Thursday, September 11, 2014

Answering Questions about Tourette's!

Today was my annual meeting with my RA. Every year the RA's at my college do something called a 1 on 1 with each of the students on their floor where they meet with them and get to know them. I had already e-mailed my RA about my Tourette's and I did my little 1 minute Tourette's speech for my floor last week. At the end I said "if anyone has questions, feel free to ask!" Today during my 1 on 1, my RA took me up on the offer and told me she wanted to learn more about Tourette's. We talked about regular things first like how i'm liking my Junior year, what classes i'm taking, and what other things i'm involved with on camous. Then she asked me several questions about Tourette's such as "does everyone with Tourette's have vocal tics?", "is it genetic?", and "is there treatment?" I was more than happy to answer all of her questions and was really glad she asked them. I love it when people want to learn more about TS, and I love spreading awareness!

After I was done answering her questions she said she was really glad that I was open about my Tourette's and willing to talk about it. She had a friend in high school who had Tourette's but never got the opportunity to ask him questions about it really and was really glad to learn more about it.She said she really likes getting to know more about people and the experiences they've had in their life. I just love people like that! :)

Monday, September 8, 2014

Mouth Splint for relief from jaw tics

Got my mouth splint today! I'm excited to finally have something to give me some relief from my jaw clenching tic. My orthodontist explained it as a bandaid for my mouth. I'll start wearing it every night to give my jaw some relief when I sleep(I clench and grind my teeth even more in my sleep apparently) and if I ever really need to I can wear it for relief during the day too. I'll probably only ever wear it at night or on weekends (even though its transparent/clear colored, it's pretty notifiable). It feels good to have it in because I know my teeth are protected. My dentist told me if I didn't get the splint, I could end up with permanent damage to my enamel and have to end up getting crowns on most of my teeth. This is the first tic that has done damage to my body, and while its a tough realization that one of my tics is actually doing real damage, its important I know so that I can take the proper steps to protect myself and my body.

Thursday, September 4, 2014

Funny TS moment of the Day

Today I was doing homework in my suite when my suite mate and good friend came back to the room. When he walked in he said "I could hear your tics from the hall! Guess I know your home!" LOL funny Tourette's moment of the day :)