52 Weeks of TS: Week 49

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just THREE weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

OK, this is really it. We are coming so close to the end of this series. I really can’t believe how fast this year has flown by. Is it really already the end? I spent the evening in a minor anxiety attack. I guess the fish oil does not help with all anxiety. I tried to keep distracted with TV, but it was not helping that much. I did end up having to take a Klonopin just to relax myself so I was able to go to sleep. By the time I woke up the next morning, I pretty much forgot about the events of the night before, but I was quickly reminded.

I was walking along the area rug in my bedroom when I heard and felt a crunch under the rug. This is usually no big deal. I am always finding something that the cats got a hold of and have hidden under the rug. I have found pencils, matches, pen caps and whatever they get a hold of, but I never expected to find a mouse. Yep, a mouse. I felt and heard the crunch, and without thinking, I just lifted the corner of the rug to find out what they put under there this time. There it was, lying lifeless but its germ and disease slowly spreading through my home.

After a minor freak out, I knew I had to remove the deceased body myself. I went into the kitchen, and retrieved a pair of tongs and a garbage bag. After picking up the mouse with the kitchen tongs and putting the mouse and the tongs in a large kitchen garbage bag, I threw everything down the garbage shoot and went on to Lysol almost every square inch of my apartment.

I have spent most of the past 48 discussing different ways and options that I was attempting to help with any of my symptoms of TS. One of the most effective things is fish oil for my anxiety, but it is definitely not working on OCD and Germaphobia. I have tried many different paths, a lot of them with no outcome, but that’s just my case.

People with TS are all different, so something that doesn’t work for me, might actually work for someone else. I have been trying acupuncture and Chinese herbs and I am closely approaching the six-week period where I should be seeing some type of change, but I haven’t seen much of a change so far. I have tried to pay attention to any differences in my body, but all I can notice is maybe more tics, or just a harder time trying to suppress my tics. I don’t know if this is the Chinese herbs, or just the comfort and acceptance that has grown inside me.

I have grown a lot this year, and become very comfortable with myself and who I am. That’s what life is for, to grow. Even though the year is close to the end, I still plan to continue on my journey of growing and educating and I hope you do, too. Until next week, “I’ll tic to you later.”

52 Weeks of TS: Week 42

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 10 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

Welcome to the wonderful world of TS, a world that brings on strange and mysterious underlying disorders. Additions to our state of mind that we might never expect, this week is depression. I don’t suffer from this much, but when I do, it hits me like a brick wall. Earlier this week that brick wall hit me out of nowhere.

It was a normal day, and by 5:00 pm, I felt the brick wall of depression crumbling around me. I ask myself, “why?” I have been working so hard to try to make changes to better my life. I just released a book, that I hope will help people all over, I changed jobs to get out of the negativity and immaturity of the previous job setting, but still the depression finds its way inside me.

On this night, I sat there and watched mindless TV with my husband, but I just sat there in a funk. The whole night I was on the verge of tears, but there was no explanation for it. My husband asked me a few times why I was so crabby, in which I responded, “I’m not crabby.” I couldn’t tell him that I was depressed, and had feelings of just not wanting to be here anymore. If I had said those words, he would have just asked why I was depressed.

How do you explain to someone that you have no idea why you’re going through this, but to link it back to this TS thing I have. We finally did go to bed and he still pushed me for an answer as to why I was acting so weird. As I sat there in the darkness of our room, the tears quietly rolled down and I still said nothing was wrong. By this point, he knew something was up, but I was still unable to explain it.

It scares me sometimes, because I don’t want to scare him. Maybe it’s the OCD inside me, but all I could think of is what was he thinking, “Did he think something is wrong with our relationship?” No, that’s not it. I don’t know why I am this way. It’s somewhat funny, ironically half way through the night he showed me an article about the creativity in writers with mental illness. As we laid there, he asked me if what I was going through had anything to do with that article. I told him, “No, ironically it started before I even read the article.”

The little bout of depression lasted just a couple days, as it always does. In the midst of my depression, I did have my acupuncture appointment. The anxiety and fear built up as the appointment approached. I actually tried to come up with excuses to cancel the appointment, but sucked up my fear and went to the appointment.

The appointment started with an interview about my medical history. I filled out a form checking off all my medical history. One of the things I did check off was depression. When the acupuncturist came back in the room, and looked over my form, she started asking about everything I checked off. When she asked about the depression I told her I go through it once a year for a couple days, and before I could even finished the sentence I burst into tears.

For no reason, I was sitting there crying in front of a woman I had known for about five minutes, how embarrassing… She said not to worry about it. I told her besides the depression I was also dealing with many OCD issues and increased anxiety about being there and having acupuncture. In actuality, it was not that bad. A few light pokes from clean, unused needles and I was quite relaxed.

I have to go back next week and do the acupuncture again, I think it might be a once a week thing. We’ll see how well it works with the tics and anxiety. I did tell her that I was on a new regimen of multivitamins, fish oil, and that I felt that it was working on my anxiety. She explained that fish oil could help with anxiety. I do have to say, I really feel like the fish oil has been helping. I usually have such horrible anxiety about leaving my apartment and getting on the subway, but now it’s not that bad of an event. There is still a little anxiety, but the level has dropped dramatically.

I hate talking about going to the bathroom, but I have discussed this a few times in the past weeks. Since the event back in august at the airport, I’ve been really trying to pay attention to my bathroom behavior. I have notice I actually do tic more during and after going to the bathroom. It’s one more strange realization, but it does put me into a small tic attack.

It’s a funny thing that we can walk through life but if we’re not paying attention, we might not realize certain things about ourselves. How are we supposed to educate others about a disorder that we have, if we don’t even know ourselves? This year has been a great year, and I have learned so much about my body, and my unwelcomed guests Tourette Syndrome, OCD, anxiety disorder, etc.

I’m glad I’m learning more about myself, and am now able to educate people about what I’m going through. Before coming out of the so-called, “TS closet”, I was uneducated about what I was going through. However, through research, asking questions, educating myself, and just looking into myself, I feel like I know my body more than ever.

While I was in the “TS closet”, I spent much of my time blaming others. I have stopped blaming others now. We can’t blame the world for our problems. We are the solution. If we educate ourselves, we can educate others. I think that we all will have to deal with experiences of ignorance, and all we can do is open our mouths and try to educate. If they are unwilling to learn, that is their own ignorance. We just have to remember that we are the solution.

Until next week, “I’ll tic to you later.”

Happily Ticked Off — The Book, Part 4: Chapter 1

At long last, here is Chapter 1 of my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.

As always, I’d love to hear from you, too!

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Chapter 1 — UnrealisTIC

Your dreams are not your kid’s dreams. Listen to well meaning educators, even if it’s scary, and trust your instincts. Oh, and get some real friends – the ones that will listen to you cry, make you laugh, and call you on your crap. Trust me on that last part.

I am not the first parent in the world to feel insecure about parenting, nor will I be the last. Special needs or not, giving birth is one big lottery ticket. You are literally making a bargain with the universe that you will do everything in your power to keep your kid safe, to make him strong, to give him values and a sense of self, but at any time he could come down with some devastating illness or get hit by a taco truck. And just like that, all those years of telling him to pick up his socks or shut the fridge to save five cents would be wasted. And you’d never be able to eat Mexican food again.

The above statement sounds so fatalistic. Most people prefer not to even think about it, and who can blame them? It’s scary. It’s unnerving.  And it’s exactly these terrifying fears that drive today’s marketing.

Rich ad execs everywhere are mortgaging their mansions based on Just In Case advertising:  Bank that cord blood just in case your kid comes down with some terminal illness.… Spend the extra hundred and fifty dollars on the Britax car seat just in case you’re hit by an out of control taco truck… Buy the brand name diaper cream just in case your baby’s butt breaks out in hives and ruins your Disney Cruise.  For that matter, book that Disney Cruise whether or not you can afford it just in case your kid grows up to hate you. You can show him, and the grandkids, those pictures of the four of you in Mickey hats coughing up a lung with laughter on the lido deck. Now how could you be a bad parent with proof like that?

Like most people, I wanted the best for my toddler. While I prided myself in not falling prey to every Mommy and Me Groupon that promised to make my son smarter than Einstein, I was also on a pretty strict budget. I couldn’t afford a four hundred dollar car seat or a fancy vacation even if I wanted one. But I did want the best for his education.

As the product of Catholic school myself, I was sure my son would enjoy the same benefits of a private Christian environment – and it was never too early to start. Nicky was three – a year away from his Tourettes diagnosis. As far as I was concerned, his educational career would be nothing but smooth sailing, so why not start him off right?

Against my husband’s wishes on the matter, who figured the local community college co-op would be just fine for our active and friendly tyke, I signed Nicky up for an elite preschool ten miles away. Distance was no barrier to my son’s learning.  He deserved the best.  And that “best” just happened to reside on a campus adjacent to the very grammar school I had attended.

The day I turned in his registration – an intense intake form that was more detailed than his hospital exit papers – I ran into women I hadn’t seen in 20 years. Those freckle faced school girls of my memories had morphed into botoxed 30-something women. Ugg boots replaced saddle shoes.  Flat-ironed hair replaced ponytails and braids. The only thing familiar was the uneasy pit in my stomach.

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Answering your questions

I have received some messages filled with questions! I appreciate all the questions and the supportive messages sent on Kane’s behalf!

I was recently asked, what is it like to live with a child who has high anxiety? Well just like anyone else, the attitudes will differ depending on the day. We monitor everything that Kane watches; we found out recently that if he watches something that may be a little scary, it has to be in the morning if at all (Like Goosebumps).

Neither of my children are allowed to watch any movies that are not an appropriate rating for their age groups. When Kane does watch something that is a little scary for him, it will usually send him into a anxiety attack before bed, when his mind is racing and thinking of everything he had done that day. Sometimes the anxiety attacks are every night and sometimes they are gone for days. It all depends on Kane and the amount of stress him mind is under.

Another question that was asked is: How often does Kane have tics and when do they seem worse for him?

Kane has tics everyday, there is not a single day that he does not have a tic. Some days will be better and of course some will be worse. Kane went through a tic a couple weeks ago where he was holding his breath and sucking in his stomach at the same time. This would happen 20-30 times a day, resulting in his stomach muscles hurting. This particular tic has slowed down and now he only does it maybe 3-5 times a day.

We are new to TS … need some help!

Hi, my name is Valeria and I’m from Cali, Colombia. Recently, my 8-year-old brother Jose Alejandro started having TS symptoms. At first, it started with very small head shakes, but in the last 2 or 3 weeks it has becomes gesticulations and some noises like “eee.” It has started to worry my family and I.

We originally thought it was Jose’s joke to annoy us, and we told him not do that, but he can’t stop and still does all of the movements. One night my mother, who is a nurse, saw a TV show that talked about Tourette Syndrome and she associated it with the things that Jose was doing. So then we started searching on the internet.

Jose has still not been diagnosed by a neurologist, but we are assuming he has TS. It would mean a lot to us if anyone here could help us about by giving us more information about TS, sharing their experiences and giving us some tips on how to deal with this. Also, is there any information about medicine and recent studies about TS?

We are very new to this, so any help would be very much appreciated. Thank you!

52 Weeks of TS: Week 32

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 31 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

This week I have been doing a lot of thinking; well, I guess my brain is always thinking, but this week I guess, I’ve been listening to my thoughts more. I’ve been trying to listen and understand why my body does the things it does. Even at 37 years old, my body still confuses me.

I’ve been doing the back and forth trips between New York City and Martha’s Vineyard. In the beginnings of my time in Martha’s Vineyard, I said my anxiety levels were at an all time low, but my tics had stayed the same. With all the back and forth trips, I have realized that my tics might have calmed down a bit in more relaxing situations.

There is always something going on in my head, whether it’s my OCD, my anxiety, tics or ADHD. It often feels like Grand Central in my head, so sometimes it’s hard to notice if something has calmed down, like my tics. Sometimes you just don’t realize when the tics are calm outside of a stressful situation, until you’re back in a stressful situation.

For the most part, people don’t realize I have TS, unless they are with me later in the day or early evening when my body is tired of suppressing. My TS affects me in many ways, but I would probably have to say the actual tics are on the bottom of the scale. Even though I tic throughout the whole day, they are usually very mild. It’s really all of the underlying disorders that affect me almost every moment of the day.

There is usually not a moment in the day that there is not some sort of OCD thought racing through my head, which then triggers the anxiety. I know I need to pay more attention to my triggers, and focus on what helps. I take my Klonopin, but I’m beginning to wonder, how much is it really helping? I know the one mg that I take at night helps quiet my mind and helps me sleep, but I’m not sure how much the .5mg that I take in the morning is really helping.

When I first started taking the .5mg in the morning it would make me so zombie like, so I started taking it with a coffee to somewhat level me out. I think it’s time to cut out the coffee part of it. Within 10 minutes of drinking the coffee, the caffeine is racing through my blood stream, causing more anxiety feeling. HELLO, why am I taking something for anxiety, but mixing it with something that brings out my anxiety? It’s time to cut the caffeine.

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52 Weeks of TS: Week 24

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 23 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

I’m tired. I think that can explain my week right there. This has been an extremely busy, anxiety, and tic-filled week. I went out of town for a few days for work, which wasn’t too bad. The trip actually started off somewhat cool. I was on the plane with Michael J. Fox, and I did actually approach him.

We ended up having a short discussion comparing Tourette Syndrome and Parkinson’s Disease. I do have to say, I was excited to talk to him. He has done so much awareness for Parkinson, as I am trying to do for TS. Even though I knew I’d never hear from him, I did invite him and his family out for dinner. (I didn’t hear from him). Either way, it was an interesting experience.

I was only out of town for three days, it was quick in and out work, not too stressful. The flight back was not as exciting, just me and my Sky Mall. Don’t judge me, we all know we do it, look through the Sky Mall shopping for things that we don’t need. However, have you ever really looked through it, I mean really looked through it!? I think the magazine might be created by a germaphobe.

There are so many different kinds of antibacterial things in there. There are lights you can shine on your hands to kill the germs, lights you can shine on your bed to kill bugs. They even have different types of travel ones. By the time the plane landed, I wanted to purchase half the magazine.

It seems like my TS loves to try new things, it’s like a kid in a candy store. I have all my normal everyday tics, but every now and then, a new one will pop up. It might last for a day or two, or stick around for a while. This week I’ve had some interesting echolalia tics. Echolalia is the repeating of words that either you have said or something someone else has said. I know I have had a touch of this anyway, but it usually only happens with commercial jingles. I constantly sing along with commercials.

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I need my 15 minutes each day

So, I’m not going to lie to you. I’m in love with another man. His name is Sam Heughan. He plays Jamie in the Starz series, Outlander. Have any of you been watching? Or, prior to the series, have any of you read the series by Diana Gabaldon?

In a nutshell, a world war 2 nurse, Claire Randall, gets reacquainted with her husband, Frank, in a boarding house in England. To pass the time while he works, she falls through some Stone Henge-esque stones and lands in 1848 Scotland during the clash between the Scots and the English. A clan takes her in for her own protection. Soon they realize she has lots of medicinal powers. Is she a witch? An English spy? We don’t know. But, to keep her safe, they marry her off to a hot highlander to keep her out of the arms of a nasty lieutenant who finds rape, flogging and all smacking the crap out of people child’s play. This highlander is none other than an outlaw – Jamie Fraser – who is six foot four, sassy and manly as the day is long.

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The problem for her is that while she must accept the new reality she is in, she misses her old one also. And yet, after consummating her marriage to Jamie, she finds that despite less than perfect circumstances, she just might be able to adjust to her new life.

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Clearly there is only one answer to my tic conundrum this month: To get over my grief of what was a nice, quiet run sans tics, I must simply be used as a sex slave to a caring, protective Highlander. Yes, that would make it all better, do you not agree?

Outlander 2014

Until tomorrow, may God grant you the serenity to accept the tics you cannot change, change the tics you can, and have the wisdom to know the difference.

Dr. Phil to misrepresent Tourette Syndrome on Thursday?

Just heard and saw some disturbing information. This Thursday, Dr. Phil is having on a girl with Tourette Syndrome. The description of the show is so disturbing. What’s even more disturbing is his description of TS symptoms on his website. It has made me so angry and sick to my stomach. He lists crotch touching and inappropriate sexual behavior as symptoms of TS. How are people like him allowed to misinform the public?

It’s all right here: http://drphil.com/articles/article/509/

Did some research on this. The definition he is using on his website is from a book published back in 1988. So he is using research done in the 80’s to educate people about TS. Have called CBS to complain about the use of old, outdated research on TS.

I just got interviewed and shared about my TS!

Whew! So I just got done doing an interview with the wonderful Ms. Angelica Carrillo from KCBY news, as she was looking for someone who wanted to share how they’ve overcome suicidal thoughts — so I volunteered! I shared how I have Tourette Syndrome and how I dealt with the depression that came from it and the thoughts of suicide in my teen years. I’ll post a link to the interview as soon as it becomes available!!