Thursday, July 26, 2012

Toe Rolls to Protect my Toes from Tics!

Ever heard of toe rolls?!?! Well I sure haven't! At least until today! Let me explain.

A little while ago (in April), I wrote a post about my toe problem in which my feet and toe tics have been damaging my toes. My feet and toe tics which involve bashing my feet up against the top of my shoe, moving and curling my toes inside of my shoe, or hitting my feet and toes against the side of a chair if i'm sitting, are causing a lot of damage to my two big toes. For more than an entire year now my two great toes have been severely discolored and bruised with large amount of blood under the toes nails. They also have ridging, which is basically when the toe nail splits horizontally. 

So in an effort to fix this problem, I've seen three different doctors! My pediatrician who referred me to a skin doctor who then referred me to podiatrist (a doctor who deals only with feet). Today was my appointment with the podiatrist. When the doctor walked into the room and saw my toes, he said "Wow you must play a lot of sports" because he assumed I had trauma from kicking a ball or having my feet kicked. 

By the end of the appointment he was convinced that yes, my feet movements must be the culprit for my toe problems and did three things for me, two of which I did not like at all! 

The first thing he did was take off half of my toenail.....This was not pleasant at all! He literally took off half of each toe nail on my great toes with pliers and with an electric nail file. My Sensory Processing Disorder did not like this! I can't even stand having manicures or pedicures or even having my finger nails or toe nails clipped, so you can image how difficult it was for me to have half on my toe nail removed!! I was clenching every muscle in my body, wincing, and digging my fingernails into my hands!! My mom thought this was funny, lol. If only she could feel what it felt like inside of my body when my toe nails were being ripped off! I can't even walk around bare foot because anything touching my feet or toes bothers me so much, so this was torture!! He told me he needed to do this though in order to remove the damaged nail which could become a breeding ground for bacteria and fungus if it was left all bruised and ridged. 

The second thing he did was give me an anti-fungal medication which I have to put on my toes two times a day for the next year because the ridging in my toes could be a place where bacteria could start to live....great. 

And then the third thing he did was give me toe rolls! lol, so toe rolls are these cushioned rolls that I now have to put on each of my great toes. He says that they will help my toes stay safe when I am doing my toe movements and that the cushions will take the blows instead of my toe nails. Hopefully I have finally found the solution to protecting my poor toes from getting all bashed up! Now for now, i'll just have to be styling these new toe rolls. Pretty snazzy, huh? 

Sunday, July 22, 2012

My Three Most Painful Tics

A friend on youtube made a video about her three most painful tics and asked others to comment on the video with their three most painful tics. I commented on the video and thought I would blog about it as well! You can see Emma's video about her three most painful tics here:

Also check out her other awesome videos about Tourette's Syndrome on her channel by following this link:

So anyway here are my three most painful tics (3 being least painful and 1 being most painful): 

3. Picking/biting/licking my lips. My lips are usually red, swollen, and sore from all the picking, biting, and licking. This combination of  tics was the very first sign of Tourette's and started when I was just three years old. I have plenty of pictures where you can see my lips are red and raw from the tics. I used to do this tic so much that my lips would bleed. There have been three times where this tic has been absolutely severe and out of control, although this tic is present year round for the most part, just not present to the extreme. The first time it was severe was when it first started when I was 3 years old. I guess it was the most painful at this time because my lips were not used to taking this kind of abuse. Then in 5th grade and 6th grade it got so bad that I would continually make my lips bleed really badly. I would have to leave class on a regular basis because my lips would start bleeding so badly and it would take at least 15 to 20 minutes to stop the bleeding in the bathroom with a paper towel held to my lips. The last time it got really bad was when the lip licking got particularly bad and it was in 11th grade. My lips and the skin around my lips were bright red and it looked like someone had maybe punched me in the face or someone had painted a red ring around my lips. It got to be really painful after about a week of continual licking, but luckily it only lasted a week or so. 
Here are three pictures where you can see the effects of my lip picking/biting/licking tic: 

This one was from when I was 3 or 4 when I first started doing this tic. You can see that my lips have been picked, bitten, and licked  raw. It was painful because my lips were not used to being torn up: 

This was my 5th grade school picture and you can see the cuts and scars on my lips from continually picking, biting and licking my lips until they bled:

And this one is a picture of me with my teacher on Halloween last year where you can still see red and raw sports on my lips: 
2. Swallowing air repetitively. When this one gets bad I have to swallow every 20 seconds or so and it makes my throat really sore and gives me bad stomach aches because of all the air that ends up in my stomach. This is probably the tic I hate the most because I have so little control over it that I can't even hold it back for more than a few seconds. I just feel like i'm going to die if I don't swallow. Die or throw up or pass out. It's really an awful feeling. The only reason this is not #1 is because I only have this tic every few months. Thank goodness I don't have this tic more often. If I had this tic on a continual basis, I really don't know what I would do. Whenever I get this tic, I just want to go curl up in a ball and feel sorry for myself. Even though other people can't see this tic from the outside, it doesn't matter to me. I would rather have many more obvious or embarrassing tics than have this one on a regular basis because its just so awful.  

1. A complex combination tic of falling to the ground on my knees, then hitting myself in the side or stomach with my arm and hand. Sometimes I make a grunting sound as well when I do this tic. As you can tell, this one just sounds painful! Obviously it hurts my knees to fall on them repetitively and then as if that just wasn't enough pain, I usually end up staying on the floor for a minute or two punching myself in the stomach and my side with my arm and hand. Yep, that part sounds painful as well. Trust me, it is. It hurts to get hit in the stomach! I feel like I'm a kid again when my babysitter would play that game with me when she would grab my arm and hit me with my own arm and say "stop hitting yourself! Why are you hitting yourself?" I just thought it was so funny! Except now, its not funny in the slightest. It's painful and annoying and obviously embarrassing! Luckily, I usually don't do this one out in public. I usually only have this tic when my tics get really really bad or when i've been holding back my tics for a while and have to "let it out" when I come home. This is the one I am most worried about with my roommate. If I hold back my tics in class to any extent or get really nervous or stressed out about finals or anything else that might cause stress then I might end up doing this tic in my room and if my roommate is in the room she will obviously see it. This one isn't really a tic you can hide, lol. This is the kind of tic that just freaks other people out, especially if they're not used to it. Maybe i'll get lucky and it will take a break for college. A person can hope, right? 

Sunday, July 15, 2012

Summer Tic Update

Today, I wanted to give you all an update on how my tics have been this summer. When I started out the summer with my job at opera theater, my tics calmed down a bit, but were still pretty bad for the most part. I  still had lots of vocal tics getting on my nerves and plenty of motor tics that were active as well. Like I have blogged about before, my tics were still noticeable and I had to tell pretty much everyone who was an usher or garden host about my TS because they just kept on asking!

I didn't mind telling the opera people about it at first, but after a while I got kind of annoyed with people continually asking me about it when I felt like I had pretty much told everyone! By the end, my tics were still bad and I was still annoyed with people asking me about it, but I still did really enjoy my time as an usher. In college, I think I will have to try a bit harder to not get annoyed with people's questions. I guess I just have to prepare myself mentally and realize that for the first couple weeks, yes I will be talking about Tourette's more than I usually do. 

After ushering was over though, my tics really calmed down. The ease of summer time, and lack of stress made my tics fairly mild. My vocal tics calmed down a lot, and my motor tics didn't give me any trouble with falling asleep. I really was appreciating this because I HATE it when my motor tics give me trouble with sleeping. 

Even when I started my OCD intensive program, my tics were still fairly mild. I still told the therapists and other members of the program about my TS, because even when my tics are mild, they are still noticeable as something different to some extent. I was really enjoying the mild tics. No more violent head and neck tics! No more falling to the ground on my knees! No more loud screeching and squeaking and squealing! And no more trouble falling asleep! This must be what its like to not have Tourette's and to just be able to be still! 

Even at my work in the neuroimaging lab, my tics were mild even though I was looking at videos of kids ticcing and talking about tics pretty much 24/7 when I was there. Boy do I love the waning phases! 

And then even when I went to my Art Sci weekend for school my tics were mild as well. I was pretty much only doing some minor motor tics and a little vocal tic that was quiet and sounded like a little grunt. Although people still did notice the vocal tic and ask about it. I had a few people ask me if I was "okay", but overall I only had to explain my Tourette's once to a Nem (who already knew) and to another boy I was hanging out with at the time. Yes, it was something out of the ordinary, and yes it was noticeable, but it wasn't loud and it didn't make people turn around and stare at me or persistently ask "what's wrong?" "are you okay?" "what was that?". Gosh, I did appreciate this very much. 

However as always, waning phases are short lived for me lately and my tics are back to being pretty prominent and annoying now. I only have 5 more weeks until my freshman year of college starts and I've been stressing out about it. My OCD intensive therapy is also getting more challenging as I am now doing larger exposures and two days ago after a large exposure on my way home one of my most dreaded tics came back to bite me! 

I hate the tic where my arm and hand bashes into my stomach repetitively! But that's what i've been doing for the past two days. Two days ago after my exposure I was doing it a lot, and then yesterday I ended up on the floor twice, falling to my knees, hitting myself in the stomach, jerking my body violently, and making a loud grunting/guttural noise for at least 5 minutes each time. 

Now I am getting really nervous about college, and this certainly doesn't help! It also doesn't help that my nervousness is coupled with extreme excitement! Even though i'm nervous about it, i'm also just so excited for college! Nerves and excitement however, equal more tics for me and i've also been having more trouble sleeping lately because of this. My tics have been bad in bed for the past week or so, and its so hot that I can't even use my weighted blanket to help my tics calm down at night. 

So pretty much, I haven't been getting enough sleep, i'm stressed and nervous about starting school, and i'm super excited about started school as well, and i'm stressed about my OCD therapy. This all makes for an increase in tics. Well at least I had a month or two of calm tics as a little bit of a break from it all. That's pretty much all there is to the update about my tics this summer so far. 

Wednesday, July 11, 2012

OCD Intensive Program Sucessful So Far!

Well, I've been in the OCD intensive program for a couple of weeks now and I am already improving so much. I'm doing things that I've been avoiding doing for so years now and I feel live this program is really a success. When I started the program, I never thought I would get to where I am now. I didn't even think I was going to make any progress at all truthfully. OCD can seem so overwhelming and all consuming that getting out from underneath it just a bit seemed so daunting just a month ago. 

Believe it or not though, I've been doing countless exposures a day, overcoming my fears, and proving to myself that OCD really does lie. I've done so many exposures now that I really am beginning to feel like I can do this and I can get out of OCD's grip. I feel like even though the OCD tells me that something is dangerous or not safe, I can confront the fear and deal with the OCD feelings and thoughts that come along with it. I was never able to deal with this before. Before the OCD feelings and thoughts were just too much for me to tolerate or even think about tolerating. Now, I face these feelings and thoughts straight on for hours each day, and slowly but surely I am proving to myself that OCD feelings and thoughts are not facts, they are just my OCD and I can tolerate them. 

This is huge for me. My OCD has been controlling my life in a very severe way for three years now. I have had OCD all my life, but the intense rituals and compulsions that have been controlling me and impacting my life got started to become severe three years ago. 

I have made so many accomplishments and have done so many things that I wouldn't be able to do a month ago. Before are some of these accomplishments that I am proud of. Keep in mind that while doing these things might not be a big deal for most people, they are a huge deal for me because I have been avoiding these things for three whole years. 

1. Eating food with my hands after washing my hands
2. Touching the inside of my shirt 
3. Touching my stomach and area above my pants line 
4. Touching washing machines and dryers 
5. Touching folding tables at laundromats
6. Toughing the door handle in and out of laundromats
7. Eating Carpaccio (a form of raw meat)  
8. Driving my grandma's car 
9. Touching the door area above the laundry room door handle in my house

This is all really to get me prepared for college so that in college OCD doesn't have a large impact on my life there. I don't want it to be a challenge for me in college or to impact my life there negatively. I probably won't be 100% OCD free when I go off to college, but the work I'm doing now is important and will help me to have an easier time with my OCD in college. Hopefully my OCD will be even better than it is now when I go off to college! 

Sunday, July 8, 2012

My Roommate for College Next Year!

Yesterday I got an e-mail back from my roommate next year for college. She will be my first real roommate and I am both excited and scared. I'm excited because she seems like an awesome person! She is the captain of  her soccer team and loves soccer, is very smart, seems totally friendly and excited about college next year, and seems just about as excited as I am to have a roommate! But i'm also scared as to how she will react to my Tourette's and OCD. I have no idea if she has even the smallest idea of what Tourette's or OCD is. She may have never even heard of it for all I know or may only know the stereotypes. I don't even know how I am going to tell her. Not sure if I will get the guts to tell her before I meet her in person or if I'll wait to tell her until I meet her. She has been kind of slow to respond to e-mails and texts, and I know if I sent her an e-mail or text about my TS/OCD, I would rack my brain and worry like crazy until she responded. Like I would be freaking out until she responded and maybe even after she responded as well. I mean its totally fine that she hasn't been responding quickly. I'm anxious to meet her and have more conversations with her, but I understand that summer is a very busy time for people and I also understand and some people don't spend a lot of time online or at a computer. I actually totally respect that and sometimes wish I was more like that as well, but it's certainly not ideal for telling someone something very personal about yourself, so this is why I may just wait until I meet her in person to tell her. Wish me luck with telling my roommate when I do choose to tell her! I don't know when I'll end up telling her, but I do know that I will eventually tell her, probably at the very latest sometime in the first few days I meet her in person., I hope she accepts me for who I am and I hope she isn't too freaked out by the prospect of living with someone who twitches, jerks their body, makes noises, and obsesses. My goal will be to explain it to her and help her to understand it without freaking her out or worrying her too much about what its going to be like rooming with me next year. Again, wish me luck. I'll tell her when the time is right. Right now, the time isn't right quite yet.

Thursday, July 5, 2012

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