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.

"Stand Up for What You Believe in, Even if it Means Standing Alone"

This is a post that I originally wrote in 2011. I decided to re-post it today because of a conversation I had with my mom about the night that I wrote about. I also wanted to re-post it for many of my campers from camp twitch and shout. This is something I wrote when I was only a year older than most of them! I can't even believe that! I might end up re-posting some of the other things that I wrote when I was around their age too. I think that might be interesting :) 

November 1st, 2011- 

"Today I wanted to write a post about an encounter I had with my grandpa over the summer. This summer, my grandpa took my family (my mom, my dad, brother, and me) along with my step aunt, step uncle, and two younger cousins to France. In France, we didn't eat as a large group that often, but on the last day we all ate together at the hotel's restaurant and I sat next to my grandpa, per his request. My tics had been bad that day and near the end of the meal I started shaking my legs and knocking my knees together. Everyone at the table knew I have Tourette's including my grandpa, but I was still very self-conscious about it and at the moment I really would have loved nothing more than to be able to sit still. I tried as much as I could to stop my legs, but they just weren't going to listen. I figured that this was my family, and that they understand and know it's not my fault. I tried as much as I could to reassure myself that things were alright. A few minutes later though my grandpa did something that really surprised me, especially because he's a radiologist  and went to medical school. He put his hand on my legs and said "stop that!" He even tried to hold my legs down. I said I was sorry and tried my best to keep my legs still, but after another few seconds, my tics started up again. My grandpa looked over at me again and said "Stop twitching. Your making me dizzy!" I didn't have anything to say back to him really. I just couldn't make myself stop no matter how hard I tried. After another minute, my grandpa said something that I will never forgot. He told me that I really needed to try harder and that if I really told myself to hold still, I could. He told me that if I tried, I could stop. How could my grandfather, a doctor, actually be saying this to me? At that moment, I wanted nothing more than to be able to stop.

As much as I felt surprised at his reaction, I really shouldn't have been too shocked. This was not the first time this had happened. A similar thing happened in 3rd grade when I was riding with my grandpa in his car and doing one of my first tics, sniffing. I had no idea what a tic even was, but I remember how he pulled over on the side of the road and stopped the car. I remember how he told me that we would sit there until I stopped sniffing and that until then, he wouldn't start the car back up again. I'm not quite sure how long we sat there before he realized that no matter how many times he told me to stop I wasn't going to. 

I was reminded of that moment as I sat at the dinner table thinking that I had had enough, that I couldn't stop. Remembering that moment, I decided to stand up for myself and for that child, that past version of myself, who didn't know what she had done to make her grandpa stop the car and start yelling. So, I got up from my chair and told everyone I was going back to the room and that someone else could eat my dessert. I walked back to my room and when I got back I started to cry and tic all over. After 10 minutes of ticcing and crying, my mom came to the hotel room with my dessert and tried to comfort me. She ran her fingers through my hair and told me that my grandpa had left and that everyone else wanted me to come back up. At this point I was crying and ticcing too hard to come back up though, so I stayed down in the room until I had calmed down enough to fall asleep.  

The next day my aunt stopped in my room early in the morning to say goodbye before she left for her home New York. What she said showed me that my grandpa even though my grandpa had said those things, the rest of my family accepted me and thought I had done the right thing. She told me, "I wanted to come see you before I left. Your Grandpa being a jerk last night and you really handled yourself well" and then she hugged me. I later learned that she had really defended me after my grandpa left. That night, she told everyone that I had done the right thing by leaving the table. My aunt made something that really hurt me into something that showed me that she and the other members of my family accept me for who I am even if my grandpa doesn't understand and just wants me to be normal. News for you grandpa: I'm not normal. I'm unique, creative, compulsive, and twitchy. I'm me." 

July 29th, 2014- 

Today my mom and I were walking the dog and talking. In conversation, I told her about a quote I saw that I really liked that says "Stand up for what you believe in, even if it means standing alone". She told me that she really liked the quote and that it reminds her of me and the time I stood up to my grandpa in France. She told me that I'm the only one who has ever stood up to him like that about anything and that everyone else is too afraid to stand up for him. She told me that she's so proud of me for standing up to him like that and that what I did was truly "classy" and the right thing to do. I truthfully don't know if she remembers what exactly I was standing up to him about, but I hope she does. Always stand up for what you believe in, for yourself, and for others. It might mean standing alone or stepping far out of your comfort zone, but in the end others will see your courage and strength and even more importantly you will know you did the right thing. 

How Inadequate Health Care in College and Two Untreated Conditions Triggered a Cycle of Misery

Okay major update time! I know many of you have been concerned and worried about me so I wanted to update you all to let you know that I am now on my way to recovery. If you've been following my blog or facebook page you have probably seen many posts over the past two weeks or so that start with something like "It's 3 am and I still can't sleep", "I'm itching like crazy and I don't know why", or "I'm ticcing like crazy and it's awful and I need to find something to help it get better because it's just so bad right now that I can't function". Basically I started itching like crazy two weeks ago, my tics got really really bad, my OCD got really bad, I couldn't sleep more than a few hours per night, and I was highly sleep deprived and incredibly itchy and uncomfortable on a constant never ending basis , and in a lot of pain, and couldn't think straight for a solid two weeks.

I was on the phone with my mom crying at least 3 times a day telling her I was miserable, I went into student health services at my college about 4 or 5 times begging them for an solid answer or for some kind of relief, and got behind on my school work and was legitimately considering that the only option left was to take a medical leave of absence from college.

The sad thing is that the whole two weeks of suffering could have been avoided and would never have happened if I had had the legitimate medical care that I was denied by the student health center. All of this suffering and misery was the result of a type of common and a fairly harmless mite called Scabies which I became infected with when I visited a friend and slept on a scabies infested couch in her common room for three nights. Scabies commonly spreads through college dorms, child daycare centers, nursing homes, camps, and any other environment where there is close contact with a large number of people. It's just about as common as lice, although not many people know that, and although they cause a large amount of misery when left untreated, when treated properly they are harmless, easily eradicated from your system with the proper medication, and mostly all suffering can be avoided!

Student health services first misdiagnosed me with the scratch itch cycle, which in other words could be called "you're just itching too much for no real reason". When they did diagnose me finally with Scabies after I had been though a week or suffering already, they  gave me a non-FDA approved treatment for scabies, a very low dose or antihistamines, and told me I could not go on a higher dose and that there were no other options to relieve the constant and agonizing itching which would continue for another two weeks after treatment despite the fact that I went in about 4 times begging for some kind of relief and describing to them how I was pretty much non-functional.

In addition, I developed extreme bladder pain one week after the itching started. I had a simple bladder infection which I had gotten in the past as well. I also went to Student health services to ask them to test me for a bladder infection. They took a urine sample but once they had it they refused to test me for a bladder infection because they claimed that my symptoms were more indicative of cramps even though I was not on my period and had never had cramps like this before even when I was. So on top of everything already, I was left with an untreated and quickly growing bladder infection that went untreated for a week and a half.

The constant itching, pain from the bladder infection, deterioration of my daily functionality, helplessness, hopelessness, and the prospect of looking at another two weeks like this was too much for me to handle on my own with a limited ability to think clearly or think logically at all really due to extreme sleep deprivation, constant ticcing, and severe OCD resurfacing.  The extreme itching and sleep deprivation combined with with frustration and inadequate health care was the cause of the intense increase in tics, sensory processing difficulties, and OCD. And it all could have been avoided! Grrrr!

Basically on Sunday, I reached an ultimate low that I have only ever experienced one or two other times in my life. I called my mom crying, and she knew that the situation was deteriorating fast. Thank goodness for my mom's logical thinking skills when my own thinking and problem solving was not there. She told me she was coming to pick me up and that she was going to bring me to an urgent care facility.

The people at the urgent care facility were wonderful! They told me I did have Scabies, I had an extremely bad bladder infection, and told me that they could completely rid me of my itching within about thirty minutes and cure me of the Scabies for good in about 48 hours. And they were not lying! They gave me injection in my lower back that was very painful but I didn't even mind because I was willing to do anything to get some relief and completely rid me of all itching within 30 minutes. They also gave me the correct FDA approved Scabies treatment which is a cream that you rub all over your body and then in 24 hours you are no longer contagious. I did that last night so I should be Scabies free in another 12ish hours and then just to be safe I do one more treatment in 7 days to make sure all of them are gone. They also way upped my dose of anti-histamines (pretty much tripled the amount the student health services put me on) , gave me a large dose of Prednisone to take in the morning also for the itching, put me on antibotics for my bladder infection, and put me on Permidian to get rid of my bladder pain which took effect and made me pain free in 30 minutes. So with proper medical care, I was pain free, itch free, and free of all discomfort within 30 minutes of treatment.
I have been itch free, pain free, and free of all discomfit ever since and like I said before, this should all be over completely in 7 days, but I will experience very little to no discomfort at all from now on during the treatment. Thank goodness for the miracle of modern medicine! I slept thorough the entire night last night for the first time in two weeks and feel just like myself again. I'm playing a lot of catch up now in school and certainly would be in a better place if I was treated sooner, but I feel good again now and I am beyond thankful for that. My tics and OCD have also returned to their normal level as well. I am so glad about that! My tics are so much better and I don't feel that horrible feeling of not being able to get rid of the urge to tic no matter how many tics or how hard you do your tics. That feeling is just awful and I absolutely hate it.

I learned a lot though. I learned that my mom is there for me when I need her even though I sometimes think she isn't supportive of me or of my health concerns. She even helped me deal with my OCD on the phone when I was freaking out. I also learned that although things like this really exacerbate my tics and OCD, I am resilient and as soon as the trigger is taken away, things will go back to normal and I will bounce back. That was one thing my OCD kept forcing me to think, that even if I did figure out why I was so miserable and what was wrong with me that my tics would never go back to their regular level and that my OCD wouldn't either. I kept thinking that I would never get out from underneath that emotional warzone, but now I know that that's just my OCD talking and that I will get better and I will bounce back as soon as I am treated!

My mom is going to call the student health services and formally make a complaint to the person who is in charge and I am never going to student health services again. From now on I will go off campus whenever I have a medical problem. Fool me once, shame on you; fool me twice, shame on me.

Beware of the Itch-Scratch Cycle

Okay time for an update. Basically my huge increase in tics and inability to sleep at night was caused by the scratch-itch cycle. Be careful if you are itchy, have dry skin, or have sensitive skin, or sensory hypersensitivity not to scratch excessively!!!! You will regret it so much!!!!

The basics: I have very sensitive skin because of my sensory hypersensitivity so when I was exposed to some irritant I started scratching and scratching and didn't stop for about three days. The result= swollen nerve endings, overproduction of histamines,  and horrible horrible itching everywhere. At least that's what the Student health services people told me is going on. So they put me on 5 different types of anti-histamines all of which make me tired. So i'm pretty drugged right now, but the good news is that the medicine helps! When i'm on it, I get a reduction in the itchiness feeling by about 80-90% and then when it wares off I feel it again and take more meds.

Also the good news is that I slept pretty much all through the night last night! It was pretty great considering I hadn't slept hardly at all this week. After a long time without a good night's sleep, I really needed that. So for now i'm on the antihistamines until the itching stops. I've been on them now for almost two days and the itching continues whenever the meds wear off. I am hoping the itching will stop soon so I can get off these meds. They make me really tired and make parts of my body ache.

Wishing for A Cure Tonight. A Cure for Ignorance.

My mom made me mad again tonight. When she's not in the right state of mind all these awful things come out of her mouth. Is it that when she is dis-inhibited her real feelings and thoughts come out or is it that when she is dis-inhibited the pressures of the society she lives in that cares so much about "status" and the "norm" cannot be overcome in her mind? I really don't know. Just when I think I have actually made an impact on her and I have actually changed the way she thinks about Tourette's and differences in general she says something like this.....

Tonight she said to me in front of two of her good friends "these people with Tourette's need to get their tics under control because they are not socially acceptable". That makes me absolutely furious! Beyond dissapointed and ashamed that my own mother would say something so uneducated and ignorant! Beyond disappointed that the kind of person she is being right now is the reason my wonderful girls at camp that I feel so protective of have to work to overcome the feeling like they are "less", "different", or that it's not okay to be themselves.

I LOVED ALL OF THEM FOR EXACTLY WHO THEY ARE! I loved all of them because they are special, and wonderful young ladies who are going to change lives and make so many people care about them just by being exactly who they are. They have already changed my life, that's for sure. Their tics make no difference!

They are who they are and I NEVER want them to be ashamed of that and I NEVER want them to be ashamed of their tics or their ocd or their anxiety. I NEVER want anyone to ever tell them the kinds of things my mom tells me. I NEVER want them to hear those words because they are NOT TRUE and simply come from ignorance.

I don't want them to have to deal with unkind and untrue words, I don't want them to deal with the ignorance some people in our society still hold, and I just don't want them to have to deal with the part of society that still thinks you have to be "perfect" and "normal" to make a difference in this world and in people's lives and to have so many people who you love and who love you back.

I want every person in the world to understand what it is really like to have Tourette's. I want every person to understand what a person with Tourette's goes though when their brain is telling their body with so much power and might to do things that they really don't want to do. These things that are brain forces us to do can be physically painful, can be embarrassing, can be the exact opposite of what we want to do in a given situation and it doesn't matter, our brain is going to keep telling us to do it until there is no resisting any more. I want them to understand how hard it is to get to that point of acceptance of yourself and your tics and your differences and then to have someone you love push that down. Many people wish there was a cure for Tourette's. I too wish for this. But sometimes even more, I wish for a cure for ignorance.

My Personal Essay: "Not in Spite of My Challenges"

Hey everyone! So as promised I am posting my personal essay that I turned in today for my writing one class. It's about my experiences in the classroom with Tourette's. Some parts are not 100% the way it actually happened and there are some facts that are a little altered for the purpose the the essay. Most of it though is very true and it took a lot to actually put it all down on paper. Of course all of the details about my life in the classroom with TS couln't fit into this 4 page paper (because the limit was 4 pages) but I think it's a pretty decent summery. Let me know what you guys think and what your thoughts are about the essay!

Not In Spite of my Challenges

Second grade was the year that was rainforest themed. A good portion of the first week of school was spent making chains out of strips of dark green construction paper that we taped together in rings to put up around the classroom like vines hanging from a canopy of trees. I was pretty good at taping rings of construction paper together and I remember my teacher, her short curly hair and long fingernails painted a sudden red, smiling down at me as I sat cross legged on the carpeted floor. I felt like this year could be different. The classroom was so alive with the vines swinging above our heads as the air conditioning fluctuated and there were stuffed rainforest animals scattered about the room on bookshelves and on beanbags. At any moment I felt as if cool thick rain drops could drip down from the vines and like my favorite song they would turn into sweet gumdrops. I would even imagine myself swinging from the vines with the stuffed animals that would come to life and become my friends so easily. This fantasy world however, soon became an escape from the classroom, just as other fantasy worlds had in years before. Every year, my real friends were animals in my head and there was a much kinder and more exciting world waiting for me when I needed to get away from the disapproving stares and comments that I didn’t quite understand. Second grade was the year I figured out that I really was different than the other kids.

                In second grade, I didn’t understand much about myself or the other people around me. I didn’t understand why things changed so much after that first week. I had had so much fun helping to create our classroom rainforest and my teacher even seemed to like me at first. Had everyone suddenly decided they no longer liked me or had it taken me a week to figure out that everyone seemed to disapprove of me for some unknown reason? I wasn’t quite sure. All I knew was that after the first week of school, the kids started giving me these looks. I had seen these looks before, but this year the kids seemed to be more articulate, more willing to say what was on their mind. They told me I was annoying and when I asked why, this time they weren’t afraid to tell me exactly what was on their minds. They told me that I sniffled too much, moved my face too much, and made weird slurping sounds too much. I hadn’t even noticed that I was doing these things or that they were anything different than what regular kids do, but one thing I had noticed was that year upon year I seemed to hear one particular word from so many of my classmates: annoying.

                From that point on, I used our rainforest classroom as an escape more and more. In my mind, I would curl up in the immense canopy of the rain forest to take a nap or to read with my two best friends, Duke and Duchess, the giant black Great Danes who could roam from tree to tree like the spider monkeys I had learned about in class. When the other kids told me to stop sniffling so much or told me time and time again that I was annoying, I would pretend to pet Duke and Duchess, whose fur felt as soft as powdered sugar.  I told myself that Duke and Duchess would never say such things to me. Duke and Duchess were always my friends, and even if I couldn’t stop myself from doing things that seemed annoyed the other kids so much, Duke and Duchess didn’t mind one bit.

                Each year of elementary school I told myself things would be different, Duke and Duchess wouldn’t be my only friends, and class would be easier for me. Each year however, I seemed to be wrong.  I had a few friends each year, but it was difficult for them to understand why I couldn’t stay still in class or why I couldn’t stop myself from making annoying noises.  I didn’t blame them though, because I didn’t really understand it myself either. As I got older, the classroom was no longer decorated with colored construction paper, and it was no longer a mysterious rainforest or a magical dessert.  There were now overhead projectors, desks lined up in straight rows, and a layer of pressure and silence that seemed to hang over the classroom. The kids weren’t the only ones who seemed to disapprove of me anymore, the teachers did too. My teachers were convinced that I wasn’t paying attention in class because I was moving around too much or using my fingers to write out “fake words” on my desk during class. To them I was a disruption for the other students in the classroom and a hassle for them to deal with. I was always moving and making noises, my handwriting was impossible to read, I didn’t understand math, I started having severe anxiety and panic attacks, and I was obsessive. For me, the classroom became a narrow vacuum of space in which the air was often sucked out pocket by pocket.

 Neither my teachers nor I knew it at the time but I had something called Tourette’s Syndrome, a lifelong neurological disorder that causes involuntary movements and sounds called tics, learning disorders, and anxiety disorders. At the time however, Tourette’s wasn’t understood by most people and certainly wasn’t understood by my peers or teachers. At the time, everyone perceived Tourette’s to be a disorder that just caused people to swear uncontrollably. Only highly trained neurologists knew that only 10% of people with Tourette’s actually have swearing tics and that more times than not the physical tics could be less severe than the other conditions it came along with like learning disorders, obsessive compulsive disorder, anxiety disorders, and sensory processing disorder. It wasn’t until high school that I would actually have a certain diagnosis, and that people would begin to have a more accurate understanding of Tourette’s, but it was a long time before high school when realized I needed to stop waiting for someone to give me an answer. I was convinced that I was the only one with these problems and sometimes this was a rather lonely and hopeless kind of thought. Most of the time I tried not to think about the fact I was different than the other kids, but sometimes I would slip into a stream of consciousness in which I considered myself to be just a weird, nervous, annoying kid who no one understood.

I can pinpoint the point in time in which I promised myself that I would no longer slip into the mindset of feeling hopeless and sorry for myself. I only allowed myself to cry in the shower, when I was surrounded by stark white walls and the heavy falling water coming from the shower head. I could cry as much as I wanted to, because no one would hear me over the sound of the gushing water. It was in 7^th grade however, that I let myself do this for pretty much the last time. I remember crying in the shower and thinking to myself how much I wanted to be a person who was smart, confident, and just someone that other people liked. I knew at this point that I couldn’t control what my body did at times, I couldn’t control what my mind worried about at times, and school was just a lot harder for me than it seemed to be for other people. Crying and feeling sorry for myself in the shower this time was not so different than the many times before it, but this time something in my mind just clicked. I made a decision that night. I made a decision that I would no longer feel sorry for myself because I was going to be the one in control from now on. I couldn’t change the fact that my body seemed to have a mind of its own, but I could change how I dealt with it.

From that point on I promised myself that I was going to succeed in whatever I set out to do, not because of luck or because I was just that kid who didn’t have to try to get an A on a test, I was going to succeed because I would push myself to succeed no matter what it took. I wasn’t going to be that twitchy kid who sits in the back of the classroom and has trouble in school anymore. One day, I was going to be a smart successful woman who people admired and liked even if I had tics and twitches and an obsessive nature that I couldn’t really control. I knew this change wasn’t going to happen overnight, and it didn’t, but I didn’t mind or even notice the wait that much because I was too busy pushing myself forward in every way I knew. I wish I could put into words how I was able to force this change upon my life and upon myself, how I was able to change my grades from C’s to all A’s, gain the respect of my peers and teachers, and begin to exude confidence in a way that I never had before. All I really know is how much I desperately wanted and needed this change in my life. The classroom became a place in which I excelled and was no longer afraid of and most importantly my view of myself changed. I no longer saw myself as a weird, annoying, twitchy kid who no one understood. Instead, I saw myself as a determined and resilient person, not in spite of my challenges, but because of them.

A Message for Diva

Today my beautiful dog passed away. She has been battling Addison's Disease all her life, and bladder cancer for these past four months. Her last dose of chemo wiped out her defense system and so when she caught a virus, she could not fight back. Diva was such a fighter, but it was her time and her body was ready to rest. I loved every moment I had with her, except for maybe those times when she jumped up on the table and ate my lunch or when she had an accident on the carpet! Diva loved to carry socks all over the house, loved eating ice on hot summer days after her walks to Starbucks, loved jumping up on the couch or on our big yellow chairs, would always be waiting at the door and wagging her tail when we came home at the end of the day, and would talk to us by growling playfully and making her adorable "talking sounds". We are known by our pizza delivery man as the house with the friendly standard poodle. 


I agree with Billy Collins, all dogs become poets after life, or at least they should. Please write me lots poetry Diva, so that maybe one day I can read it with you. Rest in peace, beautiful girl. I love you, and I miss you already. 


"Now I am free of the collar,
the yellow raincoat, monogrammed sweater,
the absurdity of your lawn,
and that is all you need to know about this place


except what you already supposed
and are glad it did not happen sooner--
that everyone here can read and write,the dogs in poetry, the cats and the others in prose."
-Billy Collins

A rough day and a mean teacher...

Had a rough day of tics today and I was yelping loudly and jerking my body pretty violently in a good majority of my classes. It was a long long day and not a very fun one. I only have 3 more days left of official classes as a senior at my high school and I have SOOOO much work. Tests, projects, essays, exams, and much more. It is a very stressful time, so no wonder my tics are bad right now. To make matters worse, I had an incident with one of my teachers (Ms. P) that made me feel very self conscious and frustrated.

Ms. P is very very strict and gets mad when people try to leave to go to the bathroom during class. In my specialized learning plan though it specifies that if I need to leave the room when I am having a lot of tics that I can, no questions asked. Sometimes my tics just get really bad in class and I need to walk around, get a drink of water, and/or go somewhere to really let my tics out. The problem is that Ms. P is just so used to me yelping and jerking in class that I think she must have forgotten about this accommodation. My tics were getting really bad and I needed to get up and walk around so I asked to go to the bathroom, but like I said Ms. P forgot about my accommodation. I guess my yelps and jerks are so normal for her and everyone else in the class. This  can of course be a very good thing, but in this case it had its downside. She wouldn't let me leave the class at first and kept asking "Is it an emergency??" "Is it urgent??". What kind of question is this? I am a senior in high school and I should be allowed to leave the class without asking permission, any time I want, regardless of if I have accommodations or not! I was not going to say to the entire class "My tics are really bad and I need to get out of here walk around or pretty soon I am just about going to fall over and be writhing around on your floor!" Okay so maybe I am exaggerating just a bit here, lol.

Anyway by the time she eventually let me leave the classroom I was so flustered and anxious that I wasn't really  in the clearest state of mind. She asked me to bring my phone up to her desk so she knew I wasn't leaving to text, but because I was so ticcy and anxious I brought my computer up to her desk instead of my cell phone. Computer....cell phone....same difference when you are so ticcy you can't hold your body still or stay quiet for more than 5 seconds! Ms. P proceeded to laugh at me in front of the entire class though and make a total scene out of my mistake. I was so embarrassed that she was laughing at me like this in front of the whole class and pointing out my mistake in such an obvious way. Have a heart lady...... I'm yelping and jerking my body so bad that I feel like I am going to fall over any second now....the least of my worries is if I bring the right piece of technology to your desk. I quickly told her I didn't have my phone with me and rushed out of the classroom. It took me about 5 minutes to collect myself again to the point where I was only yelping and jerking moderately, but I knew I had to get back in the classroom because Ms. P would surely be mad if I stayed out longer.

When I got back in, Ms. P said "Well look who decided to join us again....." in a very derogatory manner. I must have looked like a dog with its tail in between its legs scooting back to my seat. Not my finest moment. I was so pissed but also embarrassed at the same time! I wanted to go to my friend the learning specialist and tell her the whole story and get all my anger out, but I only have three days left of school, what would be the point? Thank god I will never have to deal with Ms. P again after these next three days.

My best friend Tie Dye made me feel better when I told her the story of what had happened. She agreed that Ms. P was totally out of line and that it was really rude of her to act that way towards me. It's not that she has it out to get me though, Ms. P has it out to get all of her students in general. She's one of those teacher who just hates teenagers I guess, no matter what their situation.

Oh and on a side note, I got my first paying job besides babysitting today!!! I am going to be an usher at the Opera Theater company in my area!!! I am so excited because all the other ushers are my age and I will get to meet new people and make new friends hopefully! Yay!

Sometimes I am Thankful for OCD

Someone close to me made a very stupid choice last night. I can't go into much detail, but I really thought he was smarter than that. Guess everyone does things you don't expect. People have the amazing ability to hide things, and just when you think you know them so well, they do something that you would never have thought they would do. Thank god he is physically alright. I am thankful for that, but I know it could have gone the other way. It's times like this that I am actually kind of thankful to have OCD. OCD keeps me from making stupid decisions like that. Although I really hate having OCD some days, other days I realize the good things it gives me. I am an excellent student, I am precise and have the need to finish everything, and I never put myself in situations or do anything that may harm me or do any kind of damage to by body. OCD makes me careful, precise, and wary of the things around me and sometimes this can be a good thing. My boat is a little rocked from last night, but ultimately with time everything will go back to normal.

Just So Frustrated with Tics!

First day of March! My mom's birthday is tomorrow too! It's going to be a busy birthday for her though because my Aunt is coming to town tonight. We're all going out to eat tonight so that will be fun!

Yesterday I got very frustrated with my tics. I had been ticcing like I usually do throughout the day but at the end of the day they spiked after writing club. My mom was supposed to pick me up at 4:00, but she had to deal with my grandma so she told me she would be late. Changes in my schedule, especially unexpected changes really erk me and always have in the past as well. I didn't know how late she was going to be so I decided to stay put where I was. I usually get picked up at a different part of the school when I don't drive myself to school, but since I had just had writing club my mom was going to pick me up at a different spot. I had to stay inside because it was crazzyy windy and stormy outside, but I soon realized that the room echoed.....great.

 The fact that I had to wait for my mom when I can drive perfectly well combined with the fact that I couldn't wait outside and had to wait in an echoing room made me incredibly frustrated. My tics were bad in the first place, and as the frustration just came back to bite me. I was making a pretty decently loud "reh" "reh" noise and a "wu" "wa" noise and the room was echoing and I was just so darn frustrated! I felt so stuck and dependent in the moment. I was hoping sooo much that someone who I didn't know wouldn't come out of their office and yell at me for making such a racket with my noises.

I kept calling my mom on the phone and asking her when she would be coming, but all she kept saying was soon. I ended up deciding that I didn't care if my mom had to come find me in the school when she got here, and that I was just going to get out of the echoing room next to all the offices. My tics were way to loud too sit inside because anywhere in the school was fairly quiet since only a few people were left over studying at this time of day. So I just sat outside at a picnic table making my noises even though it was so windy and storming that I felt like any second a tree branch or a telephone wire would come flying at me.

It took my mom an hour to come pick me up and even though I had tired myself out by ticcing so loudly for so long I was still just so incredibly frustrated. Thank god that nothing hit me or a tornado didn't come sweep me up, lol. I wanted to sit inside, and I wanted to be able to chat with some people, and I wanted to be able to get some work done but none of that was possible at the time thanks to Tourette's.

When I have times like these that really get me down, a part of me just wants to cry or sit and not do anything and not think about anything, but I know better than to give in to this part of me. I try to think, tomorrow will be a better day and try to think about how many people love and support me through this.


Something else that helps me is to just go through and read quotes that inspire me and help to make me feel better. Here are some of the quotes that I have been reading today to help me not feel so hopeless.

"In order to be irreplaceable one must always be different" -Coco Channel 


"Sometimes people let the same problem make them miserable for years when they could just say, "So what." That's one of my favorite things to say. "So what." - Andy Warhol


"What lies behind us and what lies before us are tiny matters compared to what lies within us."
-Ralph Waldo Emerson 


"Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.”
-Dr.Seuss 


"If I respect myself and believe in what I'm doing, no one can touch me."
~ Fiona Apple


"Intelligence can disguise disabilities and disabilities can disguise intelligence" - Kathy Giordano.

"Imagine getting bitten by hundreds of fire ants all at once then trying not to scratch the bites. That is what fighting a tic is like. Imagine trying to hold in a sneeze or a yawn all day. You just can’t do it. It’s the worst feeling in the world – having your brain tell you to do something you do not want to do but being unable to not do it." -Anonymous 


"Life has meaning only in the struggle. Triumph or Defeat is in the hands of the gods….So let us celebrate the struggle!" -Swahili Warrior Song

"Be kinder than necessarily, for everyone is fighting a great battle" -Plato 

"The only disability in life is a bad attitude" -Scott Hamilton 

“Whether you think you can or think you can’t, you’re right.” ~ Henry Ford


“Nothing is predestined: The obstacles of your past can become the gateways that lead to new beginnings.” ~Ralph Blum


“Never regret. If it’s good, it’s wonderful. If it’s bad, it’s experience.” ~ Victoria Holt 


What doesn't kill you makes you stronger!!! 

My Experience with Bullying and Jaylen's Challenge

So today I thought I would share my experience of bullying as a child. I was talking about this earlier today with a friend and we both agreed that today as teens it only takes one word. Tourettes. And then the person who was staring, or mocking shuts up real fast and becomes very very apologetic. They genuinely feel bad. It only takes one word. Although it usually only takes one word now as I am a senior in high school, I think almost everyone with Tourettes deals with being the target to bullying at one point or another in their experience, especially if they had TS as a kid. And yes, this is something I dealt with as well. The fact that I wasn't diagnosed as a kid made being bullied for something I didn't even understand so much harder. 

Starting in 4th grade my tics seemed to get more complex. I had a pretty decently long list of tics through these years but I didn't know what they were. I knew I did weird things at this point, but I didn't even know Tourettes existed. I just thought I was really weird. I still had the sniffling tic pretty frequently which in 4th grade seemed to be combined with a slurping sound that I made with my mouth. Sometimes I would just do the slurping sound on its own though. A


Also I started a squeaking sound which I usually only did while just waking up, trying to go to sleep, or sometimes while watching TV. My friends would say "What are you doing?" and my response at the time was "I'm stretching my voice". I think this is a pretty cute response and explanation for a tic for someone who had no idea what a tic even was at the time. 


I also started having more motor tics at this age. I had a motor tic where I had to hold my breath, tighten all my muscles in my stomach and chest. It essentially just look like I would freeze for a few seconds. I also had a tic where I would twitch my eye brows up and down and people would regularly say to me "you're really expressive with your eye brows" when I was doing that tic a lot. 


This is also when copropraxia showed up. Copropraxia is a type of motor tic that consists of inappropriate gestures or inappropriate touching. I started grabbing at my crotch area, which caused me a lot of trouble in terms of bullying. 

So 5th and 6th grade were the only times in my life that i've ever been bullied for having Tourettes. There were two boys in my class who spread rumors around that I grew up in a trailer park and that my parents never taught me that grabbing at my crotch area was inappropriate. They would give me nasty looks, spread rumors, and tell me that I was gross to my face. 


I wanted them to stop saying these things so much, and I wanted to be able to stop myself from doing these things that made them make fun of me, but I just wasn't able to stop. I couldn't help it. I tried to ignore them the best I could, but what they said really hurt me. I just couldn't stop myself from ticcing no matter how much I tried to control it. Looking back I realize that my tics got worse at this time because I was being bullied. The extra stress and greater attention to the tics only made them worse.

The worst thing was that I wasn't even able to tell anyone about the tics or about the bullying. The boys in my class and the things they said to me made me feel so ashamed of the things I did and because of this I was ashamed to tell anyone about it. A lot of the time I felt like I was just a weird kid and that I deserved to be picked on. 


I wasn't even able to tell anyone that these boys bullied me until years later and even then I lied to my parents and said that the boys spread rumors about me growing up in a trailer park for no reason and just because they were bored. I never have told them that it was because of Tourettes because even today there is a 5th grade me inside that is still ashamed. I have declared war against this 5th grade version of myself since I was diagnosed, and this blog is part of that war. 


Everyday I tell myself not to be ashamed of the fact that I live with Tourette's, and I try to show the people in my life this as well. Even though my friends are incredibly acccepting and supportive of TS, I still have to make an effort to convince that 5th grader inside of me to be okay with the fact that everyday I will wake up twitching and making noises and won't be able to stop. It's just a part of me, and even though it sucks sometimes, I'm going to have to deal with it. The other alternative is to hate TS and be miserable about it all the time and i've tried that before and trust me it doesn't work so well. 


Anyway I thought this would be the perfect post to introduce you all to Jaylen Arnold. Jaylen is a kid with Tourettes who is spreading awareness for TS and is on a mission to stop bullying. He's a very inspiring kid and I wish he had been around when I was being bullied in school. Visit Jaylen's Challenge and join Jaylen in helping to stop childhood bullying. Watch some of Jaylen's awareness videos as well. Way to go Jaylen! Bullying NO WAY!  


Click here to go to Jaylen's website: http://www.jaylenschallenge.org/

Here's how Jaylen says you can help his cause: 

• Donate as much as you can. Dont forget, donations over $10 gets an exclusive 'Bullying No Way!' glow in the dark wristband.

• Spread the word about this cause. I am trying to change the world, one classroom at a time.

• Don't bully people for ANY reason. When you bully someone, it is because you are insecure with yourself in some way.  If you can't help yourself, talk to a parent, a teacher, or another adult about receiving help.

• If you are a parent and you know your child "picks" on other kids, don't laugh and think it's merely "child's play" or harmless. This is serious. Kids are losing their lives. Talk to your children, educate them. Let them watch my videos under the video links tab.

• Take up for someone when you see bullying. Just as I'm trying to do in a sense, 'Pay It Forward'.  Stick together. A bully will pick on an individual, but a bully will not bully 5 kids standing firm together.

• If you are getting bullied, you HAVE to tell someone. I know you don't want to tattle and make it worse, but tell someone. Tell me and I will try my best to do an 'in-service' to your school if we have the funds available. The bully will never know it had anything to do with you.

• Come back to my website often. I am going to try and receive a strong rally of supporters in order to get help to children.

Some of Jaylen's Video's: 

Jaylen was also recently in a documentary about TS that showed on discovery health channel called Tourettes Uncovered. Here is most of the documentary which features 4 kids who have Tourettes (Jonah, Jaylen, Collin, and Marques).

Part 1:

Part 2: 

Part 3: 

Tourette's Syndrome Makes me Unique- My Grandpa's Reaction to TS

Today I wanted to write a post about an encounter I had with my grandpa over the summer. This summer, my grandpa took my family (my mom, my dad, brother, and me) along with my step aunt, step uncle, and two younger cousins to France. In France, we didn't eat as a large group that often, but on the last day we all ate together at the hotel's restaurant and I sat next to my grandpa, per his request. My tics had been bad that day and near the end of the meal I started shaking my legs and knocking my knees together. Everyone at the table knew I have Tourette's including my grandpa, but I was still very self-conscious about it and at the moment I really would have loved nothing more than to be able to sit still. I tried as much as I could to stop my legs, but they just weren't going to listen. I figured that this was my family, and that they understand and know it's not my fault. I tried as much as I could to reassure myself that things were alright. A few minutes later though my grandpa did something that really surprised me, especially because he's a radiologist  and went to medical school. He put his hand on my legs and said "stop that!" He even tried to hold my legs down. I said I was sorry and tried my best to keep my legs still, but after another few seconds, my tics started up again. My grandpa looked over at me again and said "Stop twitching. Your making me dizzy!" I didn't have anything to say back to him really. I just couldn't make myself stop no matter how hard I tried. After another minute, my grandpa said something that I will never forgot. He told me that I really needed to try harder and that if I really told myself to hold still, I could. He told me that if I tried, I could stop. How could my grandfather, a doctor, actually be saying this to me? At that moment, I wanted nothing more than to be able to stop.

As much as I felt surprised at his reaction, I really shouldn't have been too shocked. This was not the first time this had happened. A similar thing happened in 3rd grade when I was riding with my grandpa in his car and doing one of my first tics, sniffing. I had no idea what a tic even was, but I remember how he pulled over on the side of the road and stopped the car. I remember how he told me that we would sit there until I stopped sniffing and that until then, he wouldn't start the car back up again. I'm not quite sure how long we sat there before he realized that no matter how many times he told me to stop I wasn't going to. 

I was reminded of that moment as I sat at the dinner table thinking that I had had enough, that I couldn't stop. Remembering that moment, I decided to stand up for myself and for that child, that past version of myself, who didn't know what she had done to make her grandpa stop the car and start yelling. So, I got up from my chair and told everyone I was going back to the room and that someone else could eat my dessert. I walked back to my room and when I got back I started to cry and tic all over. After 10 minutes of ticcing and crying, my mom came to the hotel room with my dessert and tried to comfort me. She ran her fingers through my hair and told me that my grandpa had left and that everyone else wanted me to come back up. At this point I was crying and ticcing too hard to come back up though, so I stayed down in the room until I had calmed down enough to fall asleep.  

The next day my aunt stopped in my room early in the morning to say goodbye before she left for her home New York. What she said showed me that my grandpa even though my grandpa had said those things, the rest of my family accepted me and thought I had done the right thing. She told me, "I wanted to come see you before I left. Your Grandpa being a jerk last night and you really handled yourself well" and then she hugged me. I later learned that she had really defended me after my grandpa left. That night, she told everyone that I had done the right thing by leaving the table. My aunt made something that really hurt me into something that showed me that she and the other members of my family accept me for who I am even if my grandpa doesn't understand and just wants me to be normal. News for you grandpa: I'm not normal. I'm unique, creative, compulsive, and twitchy. I'm me.

7/29/14- Today my mom and I were walking the dog and talking. In conversation, I told her about a quote I saw that I really liked that says "Stand up for what you believe in, even if it means standing alone". She told me that she really liked the quote and that it reminds her of me and the time I stood up to my grandpa in France. She told me that I'm the only one who has ever stood up to him like that about anything and that everyone else is too afraid to stand up for him. She told me that she's so proud of me for standing up to him like that and that what I did was truly "classy" and the right thing to do. I truthfully don't know if she remembers what exactly I was standing up to him about, but I hope she does. Always stand up for what you believe in, for yourself, and for others. It might mean standing alone or stepping far out of your comfort zone, but in the end others will see your courage and strength and even more importantly you will know you did the right thing. 

A post that I forgot to post! One awful SAT class...

Here is a post that I wrote a while ago but forgot to post. The SAT class took place sometime in September before my official diagnosis.

A three hour SAT class. One teacher, four students, my best friend, Tie Dye Socks, (obviously not her real name) sitting next to me, three hours of trying to suppress my tics, and I knew it wasn’t possible. I knew I couldn’t hold back for three hours, not in such a small room feeling like everyone was looking at me, especially Tie Dye Socks. No one had seen my tics at  their worst and that made them come fast and hard. Tie Bye Socks called to me from across the room as soon as I walked in the door. She wanted me to sit next to her; of course, so I slowly sat down in the desk next to her, took out the SAT book filled with all my doodles and scratches, and began to fight the relentless urge. At first it was just uncomfortable, but after a few minutes I began to suffer in that unbearable way that always comes with suppressing my tics. Imagine an itch on the bottom of your foot. In the beginning it’s just a little itch and maybe you can ignore it at first. Now image that with every minute that you resist scratching it, the itch gets worse and worse and worse. What started out as a little itch now feels like fifteen or twenty itches all in the same spot, all on the bottom on your foot. And now that itch spreads, that insufferable itch climbs up your legs, works its way through your arms and solders, to your eyes, to your mouth, until there is nothing else, nothing else in the entire world besides that agonizing itch. That is what It feels like to have Tourettes and to suppress it. It doesn't feel like an itch in the since that it's that itchy feeling we all know but it feels like an itch in the since that I have an urge to do something (tic), I know what I need to do to get rid of the feeling, and its soooo hard and unbearable to ignore it and try not to "scratch".  I gripped my pencil so hard that I thought it was going to beak, buckled my knees, and tightened my muscles as hard as I possibly could. I began to run my nails, hard, against the palms of my hands and I couldn’t hold back any longer. I just couldn’t. I rolled my eyes up to the corners and it was like I was an alcoholic sticking their tongue in a glass of blood red Merlot. There was nothing else besides that need to tic, nothing else, nothing else. I had no choice, so I released the pencil I had been gripping, unbuckled my knees, loosened by muscles, and let it out. I began to tic and tic and tic and I told myself I didn’t care. I didn’t care what they all thought because I didn’t have a choice. I had to give in.  

            “Excuse me. Do you have a question?..........Excuse me; I said do you have a question?” I didn’t even realize that Stupid Potato Farmer SAT Teacher was talking to me. I bucked my knees again.

            “Me?” I asked.

            “Yes you, the one making all the strange movements over there.” He was talking to me, and the strange movements he was talking about were my tics. My eyes rolled again.No one and I mean no one had ever said anything to me about my tics in this way, in front of an entire class and in such a way that had so clearly singled me out. They had never been as bad as they had been these past few months. No one had ever addressed them so openly, so matter of factly as if I was the kid in the back of the classroom sharpening her brand new pencil as the rest of the class was trying to listen to the teacher. As if I was the nuisance, the distraction, the one who had to stay inside while the rest of the children went to recess.

            “No”, I whispered almost inaudibly.

            “What did you say?”

            “No, I don’t have a question”, I said a little louder and Stupid Potato Farmer SAT teacher gave me a snide look and went back to teaching his lesson. I wanted with my entire being to punish him somehow, to tell him how ignorant he was, how I couldn’t help it. Then it hit me; I needed something to say to him, and to anyone else who asked in the future. I needed something to explain these “strange movements” as the teacher called them. I needed to know why I couldn’t control my own body, and my own mind.