Ughhhh....i'm having so many tics today. I think i've had over 100 hitting tics today which is totally unusual for me since those are usually pretty rare tics for me and tops I will usually have between 1-3 hitting tics per week. Today though i'm pretty sore from all of the hitting tics in so many places.....
When this happens I start to think "Why the heck am I not on Tourette's medication?" I have been wanting to avoid the side effects really and the negative things this kind of medication could do to my health. Hopefully this is just a reaction to my excitement and nerves though about moving back into the dorms next weekend and then starting classes shortly after. That's what it probably is and when I get settled into school these tics will probably calm down a lot.
Tuesday, August 13, 2013
Blog Post From Last Night
Moving back into the dorm for my sophomore year of college next weekend. I'm excited to be living with my close friends for the first time but nervous to actually talk to my professors and classes about my Tourette's for the first time in college too. So of course between the excitement and the nerves my tics are really vamping up. Laying in bed right now trying to sleep but all my body feels like doing is spazzing out apparently. Need my weighted blanket a lot tonight! It's helping but never works 100%. I think I'm more excited than nervous and excitement seems to really get my tics going. Just wish I didn't have to deal with these darn self injurious tics like hitting my chest, arms, and stomach.....
Sunday, August 11, 2013
Moment #2: Amazing Nurses at Camp, an OCD moment
So when I was at camp twitch and shout, I wrote a list of "camp moments" on my phone so that I would remember stories from camp that I wanted to write out on my blog. I haven't written out a lot of these moments yet because I've been waiting until I felt like I wanted to write them out. For a while there writing these moments out would probably have made me cry because I missed camp so much! I still miss camp SO MUCH but I think now writing out these moments won't make me cry anymore but will make me remember the amazing times I had at camp. I am going to write another one out on this post.
Moment #2: Amazing Nurses at Camp, an OCD moment
This is another amazing camp moment that made me smile. As counselors, we weren't supposed to keep any medication in our cabin and this included Advil. I don't get headaches a lot, but I sometimes get stress headaches or I sometimes get headaches when I am doing a lot of head tics. So on about the second day I got a headache and went to the med lodge to get some Advil.
At the med lodge I told one of the nurses that I had a headache and asked for some Advil. My OCD right now is mainly focused on germs so I have a problem with anyone touching anything that I am going to eat or swallow. But before I had the chance to tell the nurse this, she touched my Advil and held it out for me to take. I of course didn't take it from her and explained to her about my OCD. I told her that because of my OCD I have a problem with people touching my medications. I expected her to give me a strange face or think I was crazy because that's what would happen in the real world if I were to tell someone about this. Instead, she gave me a warm smile, told me not to worry about it at all, understood what I was talking about pretty much 100%, and told me she was going to throw out the Advil that she had touched and get me new ones. I was so amazed by this.
She didn't even hesitate at all and didn't give me a strange look even for a second. Most of the nurses at camp have kids with Tourette's and OCD so they just understand so well. She poured me two more Advil into a cup without touching it and I thanked her of course and let her know how much I appreciated it! She then told me to remind her the next time I needed any meds to make sure she didn't touch it again.
The next time I saw the nurse and needed more Advil she remembered me and was great about it yet again! She even told me that after I told her about my OCD with the medicine she had been asking other campers if it was okay for her to touch their meds to make sure for the other campers and counselors as well. This made me so happy and made me appreciate where I was even more. What an amazing nurse and person! This kind of thing just doesn't happen in the real world :)
Moment #2: Amazing Nurses at Camp, an OCD moment
This is another amazing camp moment that made me smile. As counselors, we weren't supposed to keep any medication in our cabin and this included Advil. I don't get headaches a lot, but I sometimes get stress headaches or I sometimes get headaches when I am doing a lot of head tics. So on about the second day I got a headache and went to the med lodge to get some Advil.
At the med lodge I told one of the nurses that I had a headache and asked for some Advil. My OCD right now is mainly focused on germs so I have a problem with anyone touching anything that I am going to eat or swallow. But before I had the chance to tell the nurse this, she touched my Advil and held it out for me to take. I of course didn't take it from her and explained to her about my OCD. I told her that because of my OCD I have a problem with people touching my medications. I expected her to give me a strange face or think I was crazy because that's what would happen in the real world if I were to tell someone about this. Instead, she gave me a warm smile, told me not to worry about it at all, understood what I was talking about pretty much 100%, and told me she was going to throw out the Advil that she had touched and get me new ones. I was so amazed by this.
She didn't even hesitate at all and didn't give me a strange look even for a second. Most of the nurses at camp have kids with Tourette's and OCD so they just understand so well. She poured me two more Advil into a cup without touching it and I thanked her of course and let her know how much I appreciated it! She then told me to remind her the next time I needed any meds to make sure she didn't touch it again.
The next time I saw the nurse and needed more Advil she remembered me and was great about it yet again! She even told me that after I told her about my OCD with the medicine she had been asking other campers if it was okay for her to touch their meds to make sure for the other campers and counselors as well. This made me so happy and made me appreciate where I was even more. What an amazing nurse and person! This kind of thing just doesn't happen in the real world :)
Moment #1: Service Dogs At Camp, A Tic Moment
So when I was at camp twitch and shout, I wrote a list of "camp moments" on my phone so that I would remember stories from camp that I wanted to write out on my blog. I haven't written out a lot of these moments yet because I've been waiting until I felt like I wanted to write them out. For a while there writing these moments out would probably have made me cry because I missed camp so much! I still miss camp SO MUCH but I think now writing out these moments won't make me cry anymore but will make me remember the amazing times I had at camp. I am just going to write out one on this blog post.
Moment #1: Service Dogs At Camp, A Tic Moment
So at camp there were a few service dogs. At counselor training we were told that there were going to be service dogs that a few of the kids were going to bring to help with their tics/Tourette's. I am a huge dog lover! We were told at counselor training though that we were not allowed to pet or touch the service dogs while they are working. This is completely understandable. I knew I would have to keep an extra distance from the dogs though since my one and only touching tic seems to be associated with dogs and other animals. I've always had this thing about NEEDING to touch dogs noses when i'm petting a dog and just in general needing to touch their fur if they are close to me. So I just knew I would need to keep an extra safe distance from the service dogs at camp and then I would be fine. I seemed to be doing a really good job with keeping my distance from them, even though it was hard because I love dogs so much! But, the second to last day of camp I was talking with some campers and counselors and one of the girls with a service dog came up and started talking with us too and stood right next to me with her dog. I didn't want to move away as soon as she came to join the group because they would have probably seemed rude, but as she stood there I felt the tic building up in my arm. It just kept getting stronger and stronger pretty quickly and I knew I was going to have to do something soon about the situation. In any similar situation like this at home, I would have been forced to take myself out of the group. But I was at Tourette's camp! Why not explain myself I thought? So I spoke up and told her about my touching tic with dogs. I was planning on just telling her and then backing up from the group myself but she backed up with her dog first. As soon as she backed up and brought the dog out of arms reach, I relaxed my arm and let my tics go. So my arm jerked out in front of me about 6 or 7 times and then after my tic was done the girl said to me "Thanks so much for telling me about that. I really appreciate it!" She was so sweet about it and not mad or offended at all. She was just glad I told her and competently understood. That's a moment that only happens at camp twitch and shout :)
A note to anyone reading this from camp twitch and shout: No need to worry about this in the future with service dogs! I am always aware when I reach the point at which I just have to let the tic out and will always be able to either tell the person with the dog or step back from the dog. So there is no need to worry about putting a camper with a service dog in my cabin in the future if you need to because I will not interrupt the service dog from working! The tic does not happen every time I see a dog or am near a dog and when I do feel it coming I will be able to step back so that I don't end up touching the dog or interfere in any way with the dog's job.
Moment #1: Service Dogs At Camp, A Tic Moment
So at camp there were a few service dogs. At counselor training we were told that there were going to be service dogs that a few of the kids were going to bring to help with their tics/Tourette's. I am a huge dog lover! We were told at counselor training though that we were not allowed to pet or touch the service dogs while they are working. This is completely understandable. I knew I would have to keep an extra distance from the dogs though since my one and only touching tic seems to be associated with dogs and other animals. I've always had this thing about NEEDING to touch dogs noses when i'm petting a dog and just in general needing to touch their fur if they are close to me. So I just knew I would need to keep an extra safe distance from the service dogs at camp and then I would be fine. I seemed to be doing a really good job with keeping my distance from them, even though it was hard because I love dogs so much! But, the second to last day of camp I was talking with some campers and counselors and one of the girls with a service dog came up and started talking with us too and stood right next to me with her dog. I didn't want to move away as soon as she came to join the group because they would have probably seemed rude, but as she stood there I felt the tic building up in my arm. It just kept getting stronger and stronger pretty quickly and I knew I was going to have to do something soon about the situation. In any similar situation like this at home, I would have been forced to take myself out of the group. But I was at Tourette's camp! Why not explain myself I thought? So I spoke up and told her about my touching tic with dogs. I was planning on just telling her and then backing up from the group myself but she backed up with her dog first. As soon as she backed up and brought the dog out of arms reach, I relaxed my arm and let my tics go. So my arm jerked out in front of me about 6 or 7 times and then after my tic was done the girl said to me "Thanks so much for telling me about that. I really appreciate it!" She was so sweet about it and not mad or offended at all. She was just glad I told her and competently understood. That's a moment that only happens at camp twitch and shout :)
A note to anyone reading this from camp twitch and shout: No need to worry about this in the future with service dogs! I am always aware when I reach the point at which I just have to let the tic out and will always be able to either tell the person with the dog or step back from the dog. So there is no need to worry about putting a camper with a service dog in my cabin in the future if you need to because I will not interrupt the service dog from working! The tic does not happen every time I see a dog or am near a dog and when I do feel it coming I will be able to step back so that I don't end up touching the dog or interfere in any way with the dog's job.
A bit of an apology from my mom
Hey! I just wanted to let you guys know that my mom did apologize to me the other day about saying "people with tourette's should get their tics under control because they are socially inappropriate". She did not offer up the apology on her own but I brought it up and told her how much hearing her say that hurt my feelings. After a bit of a conversation, my mom admitted that she should have never said that to me. Makes me feel better at least to some extent to her her say she should have never said that.
Thursday, August 8, 2013
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.
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.
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