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My intro - Christine from AZ

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  • My intro - Christine from AZ

    Hi everyone,

    Since I've been posting everywhere else on the forum, I thought I should stop by here and post a formal intro. :Big Grin:

    I'm about to turn 35, and was dx TS/OCD/ADD when I was 25.

    The road to my understanding and acceptance of my Tourette Syndrome has not been an easy one. As a child, I always knew something was different about me. I never understood why I made these funny faces, or blinked my eyes so hard, or had to raise and lower my shoulder in just that certain way in order to feel ?right?. But I had to.

    I never shared how I felt with anyone ? not my parents, not my doctor, not my closest friends, not my boyfriends. Eventually, not even my first husband, until we had been married for several years. As a child, and for years later, I felt a certain shame about my then-unnamed condition. I thought I was the only one who knew what was happening to me, and that there must be something wrong with me ? I must be crazy. I felt as though if I just tried harder, if I just had a little more willpower, surely I could overcome it and stop ticcing. But it was not to be overcome. No matter how hard I tried. Not ever.

    My parents, like so many of us, constantly told me to "stop it". They called these things my "habits" and it was always a huge source of humiliation for me.

    As the years went on, I got better, as most of us do, at hiding my tics. I learned ways to channel the energy, and suppress the tics for longer periods of time. When I was alone, though, they all came pouring out.

    Although I was teased a few times, I can honestly say that most people never noticed my tics, and if they did, they didn?t say anything to me. I learned to tic mostly in private, alone.

    I spent 25 years thinking I was the only person in the entire world who was going through what I was. I had never heard of Tourette Syndrome. Then one day, while watching Quincy, M.E. on television, I saw an episode about Tourette Syndrome. The character?s symptoms looked so familiar to me ? but surely, this wasn?t what I had! ? my tics and twitches were not nearly as violent as were the character?s on TV. I didn?t take action at that time, but the seed was planted in my mind.

    I saw the same episode again several months later, and this time I got curious. I sat down at my trusty computer and did an internet search for ?Tourette Syndrome?. To this day, I can still remember sitting there, sobbing out loud, while reading that website. It could have been written about me! Finally, I was no longer alone, and I was determined to dosomething about it.

    As I gathered up as much information about TS as I could find, I became more and more sure that TS was what I had. I struggled with the decision of whether or not to try and get a formal diagnosis. I was afraid to be told that I didn?t have TS, because then I?d be back where I started, utterly alone with a condition no one understood, not even me.

    After much soul searching, I decided that I would never make peace with this beast until I knew for sure. I made an appointment with a General Practice Physician, because with my HMO that was the only way I could get a referral to a neurologist. I was apprehensive about seeing the GP, because I had read that many doctors don?t know anything about TS. Thankfully, this one did. He gave me a referral.

    The neurologist was wonderful. He is a specialist in ?movement disorders?. After asking me about two million questions and doing a full exam, he told me he had no doubt that I did indeed have a ?textbook case? of TS.

    At the time, the OCD and ADD were secondary, although on any given day, any of the three can be the "worst".

    The diagnosis was a catharsis for me. I never thought I would be so happy to find out that something was actually wrong with me! My beast finally had a name. I felt more secure knowing that there are millions of others out there who are going through the same things I am on a daily basis.

    I have a ?moderate? case of TS. I have chosen not to use meds. I?ve grown more comfortable with showing my tics in public, and letting friends know about my TS. It takes tremendous energy to suppress tics, and I find that using that extra energy to live my life is far more enjoyable than using it to suppress tics.

    I have good days and bad days, good weeks and bad weeks. I have days where my face tics so badly that I end up with sore muscles and a monster headache. I have nights that I?m ticcing so bad that I can?t fall asleep for hours. I also have days that I can almost (almost!) forget I have TS.

    My son Ryan, who is 9 years old, also has TS and ADHD, and we're not quite sure yet about OCD. Sometimes I have a tough time separating my TS and OCD and so we will wait on that one. I will be sure he always fully understands TS, and that he knows that it is only one small part of who he is.

    I?m so very sad that I lived all alone with this as long as I did. Looking back, I wish I had confronted it years ago. But I had nowhere to start. I'm so glad for forums like this where we can all share and feel less alone with our common bond.

    Thanks for listening, and I'm looking forward to getting to know you all!!

    -Christine

  • #2
    Re: My intro - Christine from AZ

    Thanks for sharing your story Christine. The Dr. Quincy episode provided a grea resource for many people who, like you were unaware of Tourette before seeing that episode.

    Glad you have joined us, Christine and we'll be looking forward to your participation in the TSFC Forum.

    Steve
    TouretteLinks Forum

    Comment


    • #3
      Re: My intro - Christine from AZ


      A very big welcome to you Christine.

      Comment


      • #4
        Re: My intro - Christine from AZ

        Welcome to the forum Christine! Thanks for sharing your story.

        Comment


        • #5
          Re: My intro - Christine from AZ

          welcome Christine

          I am glad you discovered our forum and I am sure the members here will learn lots from you and your experiences.
          Janet

          TSFC Homepage

          Comment


          • #6
            Re: My intro - Christine from AZ

            Welcome to the forum and thank you for sharing your story.

            I hope you are able to visit often and jump in to topics and make your own.

            I am glad you found us!
            PJK

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