Friday, January 31, 2014

Clonidine. Back to the Lower Dose.

I had to go down to a lower dose of Clonidine since the higher dose was making me moody and affecting my motivation. The higher dose wasn't having much of an affect on my tics anyway, so no loss there. The lower dose helps me sleep at night, but that's about it. Finding out I am this sensitive to medication isn't great news, but at least I know now and at least I tried. Also it does help me sleep which is a win considering before I was on the medication it would take me about three hours some nights to fall asleep because of my tics. So I get some benefit at night from the medication which is better than nothing. My neuro suggested trying another medication, Guanficine, otherwise known as Intuniv. But knowing how sensitive I am to medication, I'm not going to risk it. My mom agrees; my grades are just to important right now to experiment with my brain chemistry. I know how to deal with my tics, but I don't know how to deal with all these side effects when the medication doesn't even help me tics in the first place. I'll probably stay on the lower dose of Clonidine just for the sleep benefits, but I may too go off of even that if my mood doesn't improve. We'll see.

Wednesday, January 29, 2014

Housing for Junior Year

So I know my past couple of posts have been on the more negative side, talking about how my tics have been bad so far this semester and how i'm fed up with it. So I decided it's time for a more positive post! Anyway, a little while ago (the summer after my Freshman year of college) I wrote about my friend Ivy. For those of you who didn't read that post, I'll summarize it here. Basically, my freshman year I started two year freshman program about the mind and brain. It's basically an intro program for my major. In that class, I ticced a lot, just like I did in every other class. Freshman year I didn't really tell my classes about my TS because I was too afraid to. So once people noticed something was wrong, they usually tended to take one of two positions. They either stared at me in a very obvious way or ignored me so as not to get caught staring. However, in my mind brain program there was this one girl who kept making it a point to sit next to me every day. I didn't really notice though until one day she decided to start talking to me. The first time she talked to me I thought she was talking to someone else, so the first time she said Hi to me and tried talking to me I pretty much ignored her because I thought she was talking to someone else lol! Then she kept persisting and I realized she was talking to me and I responded and started talking to her as well.

Since Freshmen year, we've become friends. We've met up to each lunch and dinner together quite a few times. We've had other classes together, considering we're the same major. And we've kept in touch, at some points more than others, but none the less, we've remained friends. 

Last summer I told her briefly about my TS and about camp twitch and shout and she told me she has an older brother who has autism and is non-verbal. I know a lot about autism since i've worked with autistic children quite a lot as a result of my senior project with a class of high functioning autistic middle school students and my mom's job at a special school. In fact, i'm soon going to start helping out with their Friday after school social skills group this semester! 

Anyway, back to the point of this post. Ivy texted me about a week ago asking me if I would want to room with her and her suite-mate next year. In the text she said that she thinks I would be a really nice person to live with and rooming together would work really well! My two other suite mates from this year who i'm very close to and I all want to stay together, so we've decided on a preliminary plan of having the 5 of us (Ivy, her suitemate, me and my two suitemates) room together in an on campus apartment! I'm very excited about this idea and can't wait to room with Ivy and her friend. 

We're going to meet on Sunday morning as a group so that the people in the group who haven't met yet can meet and so we can discuss things in person. I think it will be really great to live with Ivy, her friend, and my two other friends. I think we'll all get along really well and in particular i'm excited to get even closer with Ivy. 

The only thing i'm worried about though is that Ivy has never seen my tics to their full extent. I worry that she will have a different opinion of me once she sees my tics in full force. But then I just think how my good friends who I have now have all seen my tics in full force. They all at one point had never met a person with Tourette's and now they just ignore my tics and very them as something that's just normal. I think if anyone would be the kind of person to accept my tics, it would be Ivy. Even though i'm worried about it, I know in reality that Ivy and her friend will both get used to my tics fairly quickly, just like everyone else has. And once they get used to my tics, they will see me for who I am and not for my tics. They will see my tics as just one small part of me, and get to know the person I really am. Even though I don't yet know Ivy's roommate, I trust that she is a good and accepting person. I could never imagine Ivy being friends with anyone who is not this kind of person. I think this will only bring new friendships and more support into my life. That I am exited for :) 

Tuesday, January 28, 2014

A Rough Day of Tics

Just when I thought my new dose of tic medication was working, I have a day of very bad tics. My tics have been bad all day pretty much and now i'm having a pretty rough night. I'm hanging in there for now, but I think i'm probably going to miss my first class in the morning in hopes that that will give me enough recovery time to attend my second class of the day. Today was one of those days where I feel trapped in a body that I can't control. Hopefully tomorrow will be a better day.

Tuesday, January 21, 2014

Trying 1 and a half of a pill of Clonidine

Called my neurologist early this morning as soon as the office opened to talk about the side effects that made my day miserable yesterday. Got the okay not to take the extra dose in the morning but to instead take 1 and a half doses at night. I had a much better day today! Only a little bit of drowsiness and no "sick all over" feeling or muscle weakness/pain. Thank goodness! We'll see how it goes talking the 1 and a half dose tonight.

Monday, January 20, 2014

Upping my Clonidine dose...not the best decision

My neurologist and I decided to up my dose of clonidine because even though it was helping me sleep, it wasn't having any effects on my tics during the day. So yesterday and today I took half of an extra dose in the morning. I am having so many side effects and I don't really understand why half more of a dose would do this to me. I'm tired, apathetic towards seemingly everything, don't want to talk to anyone or do anything, and I've been experiencing muscle pain and weakness as well as lightheaded upon standing. I am going to call tomorrow to see how I can get off of this extra dose ASAP. I'm supposed to be having fun today since today is bid day for my sorority, but instead I'm sitting by myself hoping no one tries to talk to me....

Sunday, January 19, 2014

Camp Twitch and Shout 2014 Summer Applications for Counselors and Campers are Up!

Camp Twitch and Shout -- One of the few places where it's cool to have Tourette's Syndrome! One of the only places where you're the odd one out if you don't tic. It's an experience beyond words. Sign up as a camper or a counselor and I promise you, it will be a life changing experience. So glad my counselor application is in for this summer!

Saturday, January 18, 2014

A bad week of tics and telling more people about Tourette's

My tics have been really bad for the past week or so. The stress of the start of the semester, being in all new classes with all new people and having to explain my Tourette's to them all makes my tics so bad! Right now just about everything is setting them off, including the awful cold I have....perfect timing. I'm also supposed to be doing sorority recruitment which is another thing that's making my tics worse. Today though with my cold, my tics, the total over stimulation caused by the cheering and screaming and crowded rooms of recruitment, and the fact that I was feeling feverish earlier, I had to leave recruitment after about half the day and come back to my dorm. I feel like i'm missing out, but I really didn't have a choice.

Last night, I went to our last sorority recruitment workshop and our pledge family gathering. I stuck through all of that even though it proved to be too much for me. At the recruitment workshop I was ticcing so much. My grand big sister is the sweetest person ever and kept checking in with me at various points during the night when she noticed me ticcing a lot to make sure I was okay. Each time I told her I was fine, even though I was really pushing my limits by not stepping out of the room to take a sensory break and to fully let my tics out. I told my grand big and my big sister in my sorority about my Tourette's during this recruitment officially, even though they both had already suspected I had it. It was interesting because for the most part I tend to tell people about my Tourette's before they notice my tics or after they see just a few of my tics, but for my big and grandbig I had kept it from them for a long time. I have always been very afraid to tell people in my sorority for some reason. Anyway they both had seen me ticcing far to often in the past so they wouldn't have really asked about it on their own, but I thought that they should know since I was getting so close to them. I told my big when we were walking to get lunch together when I was ticcing a lot by saying in a light hearted way "Walking long distances in the cold always seems to set of my tics. Have I told you about my tics before?" I knew I hadn't told her about it obviously, but it just seemed like a light hearted way to say it and not make a big deal about it. She said "no" and so I proceeded to tell her. Then she told me she had noticed them before in psyc class when we sat next to eachother which is interesting to hear because while I of course know that my tics are very noticeable to others, people rarely say it out loud.

Then I told my grand big in a quick and joking kind of way a few days later. My grand big and big were both upset about how some things were being run in sorority recruitment so I made a joke that both my big and I could get out of recruitment if we wanted to because of our medical issues. My grand big then said "Right, Jen has Chron's disease..." and I added in "and I have Tourette's Syndrome, but I don't know if you knew that already". She responded in a similar way my big did by saying "I know. I've spent enough time around you to know." This caught me kind of off guard. I was expecting her to say that she didn't know, or maybe had noticed but didn't know what it was. I'm glad though that she had enough previous knowledge about what Tourette's was to identify my tics for what they were. Not very many people can do that! She said it in a way like it was no big deal and then we moved on. I really liked how she handled it. She seems to handle everything so well.

Anyway back to the first story, when I had pushed my body way to far, I stepped out of the room and sat outside and let my body throw its little fit. My body was jerking out of control and my vocal tics were nearly constant. I prayed no one would walk by because I didn't want anyone to see me like that. Eventually my body calmed down, but I was probably sitting out there ticcing like that for at least 15 to 30 minutes. I know that might not seem that long to you, but when your body is jerking at a constant rate for that long it's really exhausting. When I had calmed down, my friend Roxy walked by to go to the bathroom. All I was thinking was thank god she didn't come by 5 minutes earlier. When she came out she could tell something was wrong so she sat with me and talked with me for a few minutes. I told her I was just taking a little break, and she didn't ask about it further. Then she asked if I wanted to go back in and we went back in together.

I debated whether I should skip out on the pledge family dinner in order to give my body a rest, but I decided that I really didn't want to miss it and that I wanted to bond with my pledge family. So I decided that I was going to make a trade off. I would go even if it meant ticcing in front of them. I am hardly ever afraid to tic in front of people, but like I said my sorority has challenged my ability to be okay with my tics. In a social environment where it's about fitting in a lot of the time, my tics stand out so in the past I have tried my best to hold them back in front of my sorority sisters. During recruitment though because I was spending so much time with them, holding my tics back for that long really wasn't an option for my body if I was going to participate in recruitment. So I told my self what I usually tell myself in these situations which is something along the lines of "I can't help it, I have a neurological disorder, and if they don't accept me because I have a medical condition that I can't control then they aren't worth my time anyway." So I have been ticcing around them all a lot more. I have told a lot of them about my Tourette's, and I have been plesently surprised. They have all been accepting, which deep down I already knew. So I went to the pledge family gathering, I ticced a lot, none of them asked questions, the night was good, and they all made me feel like I was part of the family. It was so sweet how one of the girls in my pledge family assured me I would be one of the girls to get a little sister and that she would personally make sure of it! It was also so sweet how when I told her that I had run for activities chair and didn't get it she suggested that I might be able to take over alumnae relations chair when my grand big graduated. She told me she would personally push for me to get the position since she has some power in the sorority. Overall it was a great night even though my tics were bad, even though I had pushed my body too far, and even though I had a cold. My grand big kept checking in on me to make sure I was alright, wasn't too tired, and didn't need to go home yet. She is so sweet to look after me like that. She truly acts like my big sister and the fact that she and a lot of other people in the sorority officially know about my Tourette's doesn't change how they feel about me or act around me. I feel so glad that I opened up to them and participated in the weeks activities. It would have been so much easier to hide in my room all week, but I am so glad I participated in recruitment even though it meant my sisters would have to see my tics at a more intense level and even though it meant I would have to tell a lot of them about my Tourette's.

Thursday, January 16, 2014

One of those days.....

Today is one of those days where I worry and feel like others view me as simply a collection of my symptoms or "that girl in our class who has Tourette's". Sometimes I feel proud to have Tourette's because it makes me different and unique and I feel proud of how I have handled the cards I have been dealt. Today though I don't feel this way. The first week of the first semester of college is always a rough time for me. I have to tell my classes and professors about my Tourette's before they know anything else about me. Telling group after group, person after person that I have Tourette's and explaining what it is to a bunch of people who know nothing else about me really takes its toll. I know it's something I have to do to make my semester easier in the long run, but during this first week I just feel like "that girl in our class who has Tourette's". It's pretty rare that I feel this way but I just don't know how to shake this feeling....I try to think of all my amazing friends here at college and back home who see me as so much more than my tics, who support me so much and love me for who I am. I try to think of my co-counselors and campers from camp twitch and shout and how grateful I am that having Tourette's has given me my amazing camp family, but today nothing seems to be helping. Today is just one of those days where I don't feel just a little bit different, but a lot different. Today is one of those days where I feel alone.

Monday, January 13, 2014

Guest Blog- Living With the Puppet Master

Living With the Puppet Master
By: Coleen Root 

            Throughout my life I have been in various situations where I felt like I had no control. However, I never really knew what feeling completely powerless was like until my middle child was diagnosed with Tourette’s syndrome, a little-understood neurological disorder with no cure or treatment.

           Jayden squeezed his eyes shut so hard it seemed as if he was trying to make his eyes disappear altogether. I had seen other people with this particular habit so I didn’t speculate on it too much. It wasn’t until he started shrugging his shoulders repetitively that I took notice. I turned to my good ol’ friend, Google. The words I typed into the long rectangular box were “child with shoulder tic”. A page flooded with informational sites and forums of concerned parents looking for answers in regards to their own child’s tics appeared. One word connected each entry: “Tourette’s”. I thought to myself, “Tourette’s? But isn’t that a foul language disorder? My son doesn’t do that.” I did another search with different wording. Then another. And another. Every single time, I got the same results; the kindling that ignited the fire inside me to do everything within my power to help my son.

         I educated myself on TS so extensively that I couldn’t extract any new information on the subject. The more I learned, the more I noticed Jayden’s more subtle tics that had previously gone unnoticed. As soon as I came to the conclusion that he did in fact have Tourette’s syndrome, it vanished without a trace. It wasn’t until two years later when he started 1st grade that the TS decided to return. The eye blinking brought a new friend with it, which caused Jayden’s eyes to roll into the back of his head. His hands felt left out and decided they wanted to join the party with a little bit of fist clenching. This made holding a pencil decidedly difficult. All of a sudden TS was interfering with my child’s life! Something had to be done. 

        It took over a year of jumping though the school board’s and my medical insurance company’s hoops to get a diagnosis. With that, the school transformed into one of Jayden’s most important support systems. His education has been saved. His life, on the other hand, could be an entirely different story.

        Jayden is fairing exceptionally well despite his constant companion. He is highly intelligent and quickly wins the hearts of anyone who has the pleasure to converse with him; conversations that are becoming increasingly difficult and drawn out. Some of his new tics interfere with his speaking, kind of like a stutter, but more like a breath blown out, silently stealing his voice. As time goes by and adolescence draws nearer, the tics become more complicated, frequent, and intense. Sometimes I can hear a quiet whispering of the word, “Ow.” escape his mouth as he succumbs to his puppeteer. There is nothing I can do about it. I am powerless against the puppet master that has taken my son hostage.

Tuesday, January 7, 2014

Top 5 Tourette Moments from the Camp Twitch and Shout Reunion Weekend

Note: These are not in any particular order! I just wrote them down as I thought of them.These are the top 5 moments that relate to Tourette's that happened during the camp twitch and shout counselor reunion weekend. 

1. I have a tic where I say the word "No" forcefully. My friends at college usually just ignore my tics which sometimes I certainty like, but other times I like it when people joke with me about my tics. So on the reunion one of my fellow counselors at camp who does not have Tourette's herself and who is super sweet and who I got to know a lot better this weekend, would say something funny to make light of the situation when I did my "No" tic. I loved this! It took all the pressure off and let me know that she accepted me tics and all. A lot of times my "No" tic comes at funny times, like right after someone asks a question or right after someone says something, so it sounds like i'm disagreeing with them very strongly! In reality, thoguh it's just a tic ! The first time I did my "No" tic around her it came at a funny moment in the conversation. In response, she laughed and exclaimed "I love Tourette's" Then many other times she would say "yes!" right after I did the tic or say something else like "but we do have to turn this way!". This made me feel really comfortable around her because not only did I know she accepted me for who I am, but I also got a kick out of the fact that my "No" tic was amusing to her.

2. On Saturday night the same counselor who would respond to my "No" tic decided to make dinner for all of us since she likes to cook. So we all went to the grocery store to get the ingredients. On the way to the grocery store the music in the car accidentally got turned up really loud. One of the other counselors we were with who does have Tourette's is very sensitive to loud noise because it always sets his tics off. So as soon as the music got turned up he started ticcing pretty severely. When we parked in the grocery store parking lot he was still ticcing a lot so we waited a few minutes before going in. He started to insist that we not wait in the car for him though so we went in together and he was still ticcing a lot. It was so sweet how one of the other counselors (the one who does not have Tourette's who would make light of my "No" tic) said "Tell me what I can do" to him to try to help in any way she could. She is so incredibly caring. She doesn't have Tourette's, had no idea what Tourette's even was before she came to camp 5 years ago, and she is such a strong Tourette's advocate. She has two bumper stickers on the back of her car, one says "Tourette's Syndrome Awareness" and the other says "Camp Twitch and Shout" and she even has a Tourette's tattoo. Anyway back to the story, when we went into the grocery store the other counselor was still ticcing badly which made me start ticcing badly too. The other people in the grocery store didn't say anything but both of us were going up and down the isles jerking and making noises like crazy! I was doing a high pitched noise that kind of sounds like a squeak or something like that while at the same time stomping my foot on the ground really hard. They could probably tell I was nervous about being in the grocery store so two of them, the guy who was originally ticcing and the girl who makes comments after my "No" tic made me feel better by saying that I looked like I was throwing the most adorable little temper tantrum and that my tics were so cute. I would usually be so nervous ticcing this much in a grocery store, but surrounded by these amazing people from camp I felt so safe and accepted.

3. On the last day when we were getting ready to leave, I was doing by stomping tic a lot. The same person who comments after my "No" tic asked me if I live in the dorms in college. I told her that I do and described how I live in a suite with three of my closest friends in college. Then she asked if I live on the second floor. I said I do. She then said "I was asking because of that tic (she was referring to my stomping tic)" and then said something like I must be friends with the people who live under me. I told her I actually don't know the people who live under me! The stomping tic was more frequent on the trip than it really has ever been at school. It will be interesting to see what happens if the tic will stick around and be as frequent when I go back to school..... Anyway the reason this is #3 is because she was curious about my tic and how it affected me at school and she just asked me so casually which is something that may seem so small to other people but in reality it is not for me! My friends from school or other people hardly ever do this. If they are curious about my tics or any other things that relate to my Tourette's they are to worried that asking would offend me somehow even though I tell people to ask me questions if they want to know anything. I wish people in the regular world were able to just ask me when they are curious about my Tourette's. It makes me so much more relaxed when other people are able to ask questions, it makes me feel like its not this huge elephant in the room.

After the grocery store we went back to the hotel/ suite and we all ate a home cooked meal together at the table like a family. It was so sweet and special :)

4. Another highlight of my tic was spending time with my co-counselor from camp. Two of my co-counselors from my cabin ended up coming on the trip and I love both of them!  The one that I am especially close to  is the one who has Tourette's, I'll give her the pen name of Tasha for my blog. Tasha's tics aren’t very noticeable but they're there. She also has bad anxiety and OCD like me. Tasha and I had the best conversations together this weekend! Of course we had great regular conversations talking about things like our dogs, things we did as little kids that got us in trouble, and talking about boys or jobs or school, but we also had a lot of great conversations about Tourette's, OCD, and anxiety. What I love is that we talk about it like its so normal, like we're talking about anything else that's a part of our life. We talk about it like it's normal because it's normal for us. I feel like I have so much in common with her and she is certainly the closest thing I've had to an big sister. I told her about my OCD and how I'm so embarrassed by it. She is the only person who is not a therapist who I have told specifics to about my OCD and I told her this. She asked why and I told her that it's because it just feels so embarrassing for me. Her response was she doesn't think it's embarrassing because she has such similar things. That really made me feel comfortable. I feel so comfortable around her and tell her things about myself that I never ever tell other people. She is also an incredibly open person and shared so much about her tics, OCD, and anxiety with me over the course of the weekend. And of course when I tic  she treats it like its 100% normal because ticcing is so normal for her. We bonded even more than we had previously bonded at camp as co-counselors and she told me many times that she was so glad I came.  We got to spend a lot of 1 on 1 time together since we got to hang out at the airport together during my layover and since we got to ride on the second plane together. When we were at the airport she painted my nails. I never let anyone paint my nails because of my sensory issues, but I wanted her to paint my nails so I put up with the bad smell of the nail polish and the initial discomfort of the polish on my nails. I felt like this was special.

5.At the end of the trip on Sunday I was scheduled to fly back home. My plane was canceled though due to weather. Luckily though the airport I flew into to make my connection is where Tasha lives! This meant that my trip got to be extended and that I got to spend more time with Tasha. My anxiety went crazy though with having the flight canceled. When my flight was canceled and when I was alone in the airport before Tasha came to pick me up, I was shaking, having major obsessive thoughts, and panicking. My anxiety is pretty irrational but it takes over my body and mind when it hits and it can be pretty brutal.  I called my mom and cried, but as soon as Tasha came to pick me up I calmed down pretty much immediately. I feel safe with her. So ultimately even though I had some bad anxiety and got pretty upset, I got to spend more 1 on 1 time with her. It was like a big sleepover! I went back with her to her apartment and she introduced me to her dog. Her dog is a Chihuahua dachshund mix and is so sweet! She is such a lap dog and will sit in your lap and sleep with her. She has such a personality and loves to play too! She also understands English and listens to her owner better than any other dog I've met. So we went out to dinner to a really nice restaurant talked and then when we got back we layed in bed and watched two great movies together, Untraceable and the Butterfly effect. Kind of like how I let Tasha do my nails even though it bothered my sensory processing disorder, she watched two semi-scary movies with me even though it bothered her OCD and anxiety. The movies were psychological thriller movies which are pretty much my favorite types of movies and she really liked them even though they were scary and wanted to share them with me. We had a great time watching the movies together. Afterwards she was a little scared, but she said because I was there with her she was okay. My flight wasn't scheduled to leave until 10:00pm on Monday night so that meant we got to spend the whole day together the next day too. We slept in late, ate lunch, and then watched the movie Date Night. Then we had dinner where we talked more too and had more good conversations! She drove me to the airport and we hugged and said goodbye! She told me that she really enjoyed our time together. I often worry and obsess about what other people think of me but when I'm with Tasha and the other counselors from camp I know they accept me, always. I don't have to worry that they think I'm weird or that they don't accept my differences. They know my differences personally because they live with them every day, to them stomping your feet on the ground, twitching your face, hitting yourself, and making noises is normal. To them going into panic/anxiety mode because your flight was canceled or having to avoid touching certain things because you think touching them will make you sick is normal. It's incredible to be understood on this level. Being at camp and being with the people from camp is the most understood I have ever felt in my life. I feel like they are all living my life. Even though we don’t have the same tics, same obsessions, or same things that trigger our anxiety it doesn’t matter; we get it and we get each other.  

Monday, January 6, 2014

Small Update about the Camp Twitch and Shout Counselor Reunion Weekend

Sorry about the slight absence from my blog and facebook page! I have been in South Carolina for the camp twitch and shout counselor reunion! I'm flying back home tonight. I will write more about my amazing time later! I had so much fun seeing my fellow twitch and shout counselors for the weekend. Now i'm staying with my co-counselor from last year due to the cancellation of my flight last night and we have been having a great time. Luckily she is here for me and has been amazing enough to open up her department to me. She says its no trouble at all and is actually glad my flight got canceled because we to to spend an extra day together. She is so sweet! Okay time to catch up with blog posts, facebook posts, etc!