I wouldn’t wish TS on my worst enemy…BUT…

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A big thank you to those who stuck around and helped the first entry after a long break become a big success. It feels nice to be back consistently advocating for awareness, and to see that the passion of the community is as high as ever!

This entry is going to focus on the things that as someone with TS, I wish others who didn’t have it had to experience at least once in their life as someone with the disorder. Hopefully this wont come off as vindictive as it had originally sounded, but the feelings are real, and I promised when I started this blog to be as transparent emotionally about Tourette’s as I could.

As the title states, I wouldn’t wish Tourette’s on my worst enemy. I wouldn’t wish for someone to have to deal with the lack of control and all the things that go with it every day, through every stage of life.

BUT

There are a few things I do wish they could experience for a day that I feel aren’t just unique to TS, but many illnesses and disorders.

The overwhelming anxiety that this is controlling my life – It’s well documented that Tourette’s is chronic and there is no cure. With that said, TS is a 24/7 attachment to whatever it is I am doing. I think about how it effects my work, my personal relationships, my sleep, my overall health…and sometimes, it feels like the inability to not think of how it affects every part of my life makes it feel like it is controlling my life. If others knew how daunting this is, they might be more understanding of how to combat these thoughts and how just the littlest thing can have a big impact.

How it effects even the things you’d never expect as a bystander – As someone without TS, you may be able to draw the conclusion that it effects your ability to interact with others in work/school and social situations. But what if I told you TS even effects my ability/confidence to drive long distances? It also effects my ability to keep my car windows down on a nice spring day because the second I get to a red light and I feel a tic coming, I roll them up to protect myself. These are just few of many personal examples, and I think anyone reading this with TS is already creating their own list and nodding their head. Tic’s are more than what you see on the outside, and if more people understood the parallel reactions we have even doing the smallest of tasks, we might not feel the need to make up excuses and instead be honest.

What it’s like to be stared at and not be able to stop what drew their attention – Imagine you are at the grocery store when you suddenly realize you have toilet paper trailing from your shoe. You draw a few stares then look down to find the culprit and immediately disconnect the paper. When you look up, no one is staring anymore. You have eliminated anyone’s reason to and can go about your shopping trip. Now imagine that toilet paper is permanently stuck. You have to walk around the store as the guy or girl with TP hanging from your shoe. No matter what you do, you can’t lose it. This is a silly but valid representation of what it is like to draw stares for ticing in public. No matter what you do, you can’t stop doing the thing that is drawing the attention. If others knew how demoralizing it is to not only have to fight the embarrassment of being gawked at, but the way it causes a self-depreciating tone of voice inside us because we just wish we could be normal, they might think twice before looking our way.

I could probably go on and on, but I think after this, most of the items link back into the 3 I listed. The point of awareness is not just for people to understand what TS is, and to raise funds for the fight against it. Raising awareness to me is just as much about making it some people like me didn’t have to wish that others could feel the things above just so that we don’t feel alone.

Let’s be considerate, and above all, let’s be kind to each other.

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Resilience with Tourette’s

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Annnd I’m back! Thank you for all your patience in my absence. I’ve recently been dealing with a lot of stress and comorbidities that have zapped not only my positive energy, but my desire to be engaged with anything and anyone. I had to dial back and focus on fewer things and build my resilience back up to the other parts of my life I’ve been neglecting. I stepped back from the blog schedule not because Tourette’s awareness isn’t just as important to me as it was a month ago, but because I refuse to half heartedly speak on the matter just to stay on schedule. I wanted to instead wait until not only my heart, but mind were in it.

Without further ado…lets get into this entry’s main focus: Building resilience with Tourette’s Syndrome!

I recently caught up with the latest webinar held by the Tourette’s Association of America that was given by Dr Kenneth Phelps Ph.D. In this blog, I’d like to summarize some points I found most impactful.

One of the first things discussed was the difference in recovery, resistance, and reconfiguration. He used an example of a tree in the wind. It might recover by returning to it’s sill and upright position, resist by upbringing of roots in a sort of defiance, or even reconfigure the way it grows and moves to better suit it’s surrounding of high winds.

Re-configuring is a form of building resilience. It not only causes you to acknowledge that something negative or counter-productive is happening, but to also take control of what you can to adapt when those things arise to the point of mastery. As someone with TS, you can’t control the way others might react when you tic, or even when you try and explain what Tourette’s is. What you can control, is how you respond in those situations. When you do something as simple as prepare a default response to hecklers, you are re-configuring yourself to the unpredictability of society.

Another note that I felt was deeply important was that resilience is about experiencing suffering alongside strength. You don’t build resilience without something to react against. The recognition of this is a step to building resilient behaviors such as focusing on something positive or easy to control in times of angst and understanding that the angst is what gives you the opportunity to do those things. Dealing with a general lack of control of my body with Tourette’s has forced me focus on the way I communicate with others, and myself. If it weren’t for that lack of control, I may not place as much importance on these things that are a critical part of success in many facets. That recognition is a building block of resilience. Taking the bad and figuring out what I can do that is good to counteract it.

Lastly, he touched on how mindfulness is a key factor in being resilient. Being mindful allows you to not react to situations, but instead respond. When a situation such as an increase in tics arises, instead of reacting in a way that might include withdrawing from activities, or self-depreciation, be mindful that these fluxes usually aren’t forever, or that overtime you will find ways to adapt by just remaining in the moment and living with it. Resilient individuals are often able to identify anxious or negative thoughts that are strictly reactionary; Step back for a moment; Then respond in a controlled matter instead, knowing that those reactions are only temporary.

Resilience isn’t something you are born with. It is somewhat forged by fire and the striking of ax on stone. It doesn’t happen overnight, and if it is something you struggle with, it can be achieved with determination. In fact, if you’re struggling to find resilience, yet still trying, you’re already halfway there.

You can watch the full webinar HERE. I highly recommend it!

TS: A look on the light side.

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Thank you to everyone who has supported, liked, commented, and shared this blog. This cause would never get off the ground if not for your enthusiasm!

This week I’d like to sort of lift out of the fog of the negatives and scary things about Tourettes, and take a moment to look on the light side. While I feel like being honest about the hard parts of the disorder and how it makes me and others feel, it is equally important to realize that sometimes…it can be quite humorous.

I’d like to disclaimer this by stating that I am not making light of TS as a whole. My previous blog content will back this up and being an adult with TS I understand how troublesome it can be in every aspect of life.

With that said, let’s get into some humor!

Have you ever felt personally victimized by a tic? I sure have!

Just yesterday my boss was kind enough to buy me lunch from my favorite Mediterranean restaurant. I don’t traditionally take a lunch breaks, so I instead was indulging at my desk with on hummus and a pita triangle when my shoulder jerk tic happened, forcing my hand upward and smearing hummus all over my nose instead. To make matters better, my boss just so happened to be walking down the hall to hand me some paperwork at that moment. All I could do was laugh because, here I was. about to construct a tax return for a corporation with hummus all over my face, and my Tourette’s was to blame.

That, however, doesn’t top what happened to me on my drive home a few years back. I rarely forget when I’m at a red light and someone in a passenger car is clearly flirting with me because, frankly it doesn’t happen often (the wedding ring on my hand that is usually out the window is usually a repellent I suppose.) So, what did I do? Start flicking my wrist, tensing my obliques, and all sorts of other random tics that made it look more like I was dancing than anything. I decided to roll with it and actually started dancing, which made the passenger in the other car dance, and we both got a good giggle out of it.

The point is, sometimes, laughing is the only thing I can do to keep from crying. And you know what? Sometimes it even completely changes my mood. Tourette’s is a serous matter and has serious impacts on individuals, but being able to laugh when a situation calls for/allows it, is something that has helped me come to terms with the lack of control in my body.

Have you ever had an incident like this? I’d love to hear them! Feel free to comment, or find the blog on Facebook and twitter!

The times they are changing

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As always, thank you to everyone who has been following, sharing, and contributing to this blog by liking, sharing, and commenting.

This week’s topic is related to my recent neurologist appointment…my first in 17 years! If you’ve been putting off an appointment as well…maybe I can help ease your mind.

Boy…let me tell you…a whole lot has changed in that amount of time.

First and foremost, I met with a very kind, soft spoken neurologist whose demeanor instantly put me at ease. I cannot stress how important that is for anyone in the medical field, or who may be considering it. When a patient is dealing with something that is not only scary (It’s still scary some days) but riddled in stereotypes and horror stories of misdiagnosis, it is that immediately established personal connection that allows the defenses to come down.

Now…to get to all that change I was talking about. From the second I uttered that I was meeting the doctor for TS, it became apparent to me how far research has come in understanding how the disorder really works. The doctor had a respectable list of questions that felt extremely relevant to not just TS, but what it is like to have TS continue to be influential in adult life. She took time to explain that the way we treat Tourette’s has, and continues to change. While there aren’t many FDA backed and verified studies, there have been enough done to offer patients a wide range of medications, as well as CBIT.

Each medicinal option was laid out for me by class, whether it be anti-psychotics, anti-seizure, muscle relaxer…etc. Not only did she have a full list of options, but also explained how each one works to reduce tics, and the possible side effects. We ended up deciding on an anti-seizure medication, but after doing a little polling and research, I decided the brain fog side effect is too much of a risk with my job. I plan to follow up and consider other options.

Of course I still got to do the Nerve check test where you close your eyes and touch your nose, walk on your toes and heels, and all sorts of other things that make you feel absolutely silly. We discussed my neck tic and she agreed it could be causing my headaches, but that the headaches themselves are probably migraines that are triggered/aided by the movement. It was a relief to know that there is no physical injury at this time, and I am still working hard to fight that tic every step of the way.

It was also a relief to come out of the fog a little bit and join the new era of TS treatment and Neurologist relation. Sometimes it’s just nice to have a professional remind you that you’re not crazy, you can live with this, and that they are there to help you along the way.

The puzzle of Tourette’s may not have a solution, but we are getting closer. Keep up the good fight!

It feels easier to let them think I’m weird: Telling others about TS

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As always, thank you so much to everyone who has read, shared, and commented. The last entry was an astronomical success, and I was so grateful to have others reaching out to me with their stories.

As mentioned in the last post, I recently saw my doctor and finally came clean about my TS and my concerns. I am happy to say I have one FANTASTIC doctor who actually listens with a compassionate and ear. She did refer me to a neurologist who I will see in a few weeks regarding my tic issues and what may or may not be going on with my neck/headaches. Mid appointment, I stumbled upon this week’s topic.

Why is it so hard to tell people I have Tourette’s?

My TS diagnoses came when I was 12 years old, and until recently, I’ve spent most of the last 17 hiding it. (You are allowed to do the math) But why? Even as the world pushes towards universal acceptance for everyone and every condition?

I’ll admit, for most of my young adulthood, I kept expecting the “You’ll eventually grow out of it” to kick in. Mind you, my diagnoses came at a time where TS was far less researched and understood even compared to just a decade later. I wasn’t given many treatment options because they simply didn’t exist on an accessible scale. When I didn’t grow out of it, I assumed it was something I did wrong, which brought on a lot of shame. Shame that was only amplified by the memories of being bullied and having people who were supposed to have my back not believe me.

I held on to that anger, and it swallowed so many years whole. Years I could have been honest and spreading awareness in my little community were wasted, all because I couldn’t admit that I even HAVE TS. When that sunk in…it sunk in hard. At 25 years old,  I finally made a post on FaceBook that was sort of my coming out party. It felt nice, and eventually, years later, I started this blog.

By now I figured I was cured of that anxiety, but as I sat in the waiting room ready to discuss having TS with my doctor, I realized I was wrong. Sure, I went through with it, and that is something even just a few years ago I would have never considered, but I was still very torn up about doing so. You see, sometimes it’s easier to let someone think you’re just weird and not dealing with some sort of health issue. The second I tell someone about my TS, I feel like they start looking at me differently. Like they suddenly notice every little tic and every closet of my comorbidities are cleaned out. Even when there’s no indication, I start to put that strike on me and the insecurity can be so heavy sometimes I wonder why I even bothered.

What’s helped (not cured) this issue is remembering all the good that comes with spreading awareness. What better way than to be a walking, living representation of a disorder surrounded in stereotypes and misquoted facts? If each person I talk to about the issue takes away just one fact, then I have done more good in the TS community, than all the bad I think I could do to myself.

I may not wave my TS around proudly, but I refuse to wave it around shamefully

Tourette’s is a pain. Literally.

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As always, I would like to thank everyone who has continued to support this blog and this cause. You are the vessels of awareness that the TS community so desperately needs.

This week’s topic is as the title alludes to. PAIN.

I have said it before, I’ll say it again, and probably 100 more times: Tourette’s is more than tics. It is more than what people see on the surface, and sometimes, even more than what they may observe about your comorbidities.

Sometimes Tourette’s is straight up painful.

Physical tics can cause fatigue and even wear and tear on certain muscles, and even lead to injury in some cases. Vocal tics can put a strain on the vocal cords and cause sore throats or voice loss.

Imagine you go and work out and after doing something such as squats repeatedly; your muscles are sore the next day. You’d probably skip squats the next day, right? With TS, you don’t get a say in when you stop these proverbial ‘squats’ and this can lead to more soreness and eventual injury.

What made me bring up this little nugget of truth is that recently, my neck tic has really started to cause me a lot of issues. I am getting headaches that range from the back of my neck where it meets my skull, and up around my temple. Sometimes they last for days with very little response to OTC pain killers, and it took me a while to connect the two events. At first, I’d get one maybe once a month and then they’d disappear for a long while. Now, I’m getting them multiple times a month and the duration and stress they are causing has reached a level that I am going to bring them up to my doctor this week.

Part of me wanted to do this blog for the usual reason, which is to spread awareness. The other part, admittedly, wants to see if anyone else reading has brought up a tic related injury or concern to a doctor, and if they were able to give them any decent referrals? Is there something I should be looking for in response to this? I’m nervous about it, despite the fact that my GP is very personable and has never brushed aside a single issue I’ve brought up.

This is Tourette’s, my friends. It’s a cycle of tic, react, stress, adjust, rinse and repeat.  I wanted to let you in on that as I feel it, again, is real. It’s the personal side of the disorder that need’s to be brought to the world’s attention just as much as the definition of the disorder itself.

It’s like batting with a strike against

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Once again, I’d like to thank everyone who has supported this blog in any way. Without you, this movement for awareness would simply stall out in cyberspace.

This week’s blog is going up a little early because I’ve come to find that if I don’t capture these things as they happen, I shy away, which does the community no justice. Today’s blog is not going to be written with a smile. It isn’t going to be a joyous occasion, but it will be real. And after all, isn’t that what the world really needs? Someone to stop sugar coating every thing?

Have you ever heard someone go into a situation where they weren’t confident and say they were “batting with a strike against”? This could practically be the moto of my life some days (more days that I’d like to admit.) Tourette’s has always made me feel like I’m stepping in the batter’s box down a strike, and that I have to be razor sharp in every way just to be successful/likeable. Any mistake feels like it holds the weight of twenty and takes me right to the edge of striking out. This happens at work, in my marriage, and my friendships.

The worst part? I know it’s happening!

I know that when my Tics are bad that I am more susceptible to being easily over stimulated, sensitive, and moody. I know my brain is just looking for a reason to get down on myself and remind me that I will never be normal. I will never be pure and perfect. And to make matters even worse, I also know in my heart of hearts that none of those things are true! (Yea, I’m a hot mess) Knowing that gives me a false sense of security. It gives me a reason to think I can control myself when in reality, I feel like I am absolutely at my least controlled, and I end up doing the very thing I don’t want to do, and I hurt someone. I hurt myself.

I wanted to put this out there because I’m also aware enough to know I’m not alone, and still know that there was a time when that knowing wasn’t a reality. If you are in that place, please know that this is not some false “I’m just doing this to make you feel better” confession. We are human. We are flawed and as beautiful as flaws can be, they are still flaws. That is HEAVY, but it doesn’t have to be a burden.

There is help, and often it’s the help you’d offer to someone else, and if you’re like me, not offer yourself. Help comes when you value yourself enough as others, look in the mirror, and tell yourself it is ok to reach out. It is ok to get help. It is ok to talk to someone. It is ok to admit you’re not doing ok, because there are no strike outs in life. There is no score. There is only another chance to swing.

Knock it out of the park.

The carousel of Tourette’s daily impact

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Thank you all for your support of this blog and cause. Awareness is nothing without the individuals willing to fight for it.  A special shout out to Ben at Tourette’s podcast for featuring our blog “Some days it has you” on their brand spanking new (and awesome) official webpage. Check it out here: https://www.tourettespodcast.com/

This week I’d like to touch on the impact, or lack thereof of TS on daily life, and the inability to predict when those impacts are going to spike.

Imagine you have a bum knee…maybe tendonitis or arthritis. It bothers you enough to see a doctor and get a diagnosis and possibly a treatment. For a solid week you’re feeling better. Steps, grocery shopping, and other daily tasks cause you no pain. Then one day you wake up and you can hardly walk without tinges of discomfort. You shake your head and go “Darn arthritis” then adjust how you go about your day in order to accommodate your body’s current needs.

Tourette’s is not so different in the way it can wax and wain into your daily life at the proverbial drop of a dime. Sure, there are situations and times where I would expect my tics to increase such as times of high stress or after dealing with any sort of adverse event. But some days, for no apparent reason, I can’t seem to stop ticing to save my life. To the point where I’m ready to call a doctor and try medication (that is not a shot at anyone who is medicated currently. I’m lucky enough to have gotten along without it, but I understand its importance in so many cases.)

It’s absolutely exhausting and unnerving to never know when I’m going to have a bad tic day. It’s hard to explain to family and friends the mental toll it takes when we were bubbly and energetic the day before, but tired and down now. We are not the only ones on this crazy ride and keeping honest lines of communication up is absolutely key in all the chaos.

Sometimes, all we can do is chalk it up to the old cliché, expect the unexpected. Trying to predict TS is like trying to predict the weather here in the Midwest (Seriously, why do we even have meteorologist here?) But remember, if you go days where your tics are barely noticeable, then wake up the next day and it feels like you’re never going to gain control of your body again, you’re not alone. If you also find it frustrating, you’re not alone there either

They can’t all be good days, but they all won’t be bad either. We are all in this together. One tic at a time.

Tourette’s, Humiliation, And letting go.

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Thank you to everyone who has stopped by this blog. Your interest in ,and dedication to Tourette’s Awareness is truly appreciated. This cause is very near and dear to my heart, and I can’t thank you enough for embracing it.

Today I’d like to talk about something a bit unnatural to freely bring up, and that is humiliation. I’m willing to bet that, regardless if you have TS or not, you have been humiliated at least once in your life. Maybe you left your zipper down in front of the whole class during a presentation. Maybe when the waiter said “enjoy your food” you said “Thanks, you too” These are usually sparse incidents in ones life, but with TS, these situations multiply tenfold.

When you leave your fly down, you probably double check that thing the next time you head out, but when you have TS, there is no way to double check your tics. There is no way to get around the eventual taunting and teasing and embarrassing moments. So how can you learn to cope? Is that really even a possibility. In my journey I’ve found out that the answer is both yes….and no… I know; How poetic? Let me explain…

All of my earliest Tourette’s memories revolve around humiliation. Whether it was a family member telling me I needed to go to another room if I was going to make noises, or the kids at school mocking me and saying I was possessed, I dealt with my fair share of it. The unfortunate truth was, I learned early on that it’s going to happen. And it’s going to happen a lot. I’m not going to claim to be perfect. I have harbored and still do harbor a lot of anger around this issue, but I have learned to let some of it go. Here’s how.

Speak up: Humiliation isn’t always related to a direct tease or mocking. Sometimes it’s the way someone looks at you when you tic; Or it’s them asking you in public if you’re ok even though they know darn well you’re just ticing and now half the store/room is looking at you. It isn’t always intentional, and that is why you must make your feelings known, and don’t apologize for feeling that way, or get routed into thinking you are over-reacting.

It’s not ok. So, don’t say that it is: If someone is moved to apologize, accept that apology, but do not recognize anything about humiliation as OK. It gives off a mixed signal and gives others the idea that humiliation can be fixed with an “I’m sorry” like some sort of band-aid.

Forgive ignorance: Ignorance doesn’t equal intent. While we are currently working towards raising Tourette’s awareness, it is still somewhat of a well-kept secret outside of the misconceptions that surround it. It seems unfair to have to forgive someone for using something you have no control over against you, but it is a crucial step in spreading awareness and educating others about TS. I’ve found it amazing the bite it takes out of the humiliation if you are able to push through the anger and pain and use it as a teaching moment. Maybe, just maybe, you can stop them from unintentionally (or unfortunately, intentionally) making the same mistake with someone else.

Please understand that this is not a perfect science. People process every human emotion differently within themselves, even changing situation to situation. Comorbid disorders also play a role in this. This is simply a personal guideline that has helped me find a light in one of the darker corners of TS. If it helps even just one person, I’d be ecstatic 😊

Thank you!

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The reason for the season: TS awarness month.

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Thank you to everyone who has followed, liked, and shared this blog. Your support of Tourette’s Awareness means the world to me, and so many others. I am forever grateful.

As some of you may know, Tourette’s awareness month officially kicks off May 15th, and being that this is the last scheduled blog before it starts, I wanted to play hype-person and give you all some of the reason I feel like TS awareness is so important.

Here we go…

Social Acceptance: I think this is one of the roots of most awareness efforts, but it’s as vital as a pulse regarding TS. I was scrolling through my FaceBook feed the other day when I came across a story about a 15-year-old girl who was forced to leave a screening of Avengers: Endgame due to her tics. She was labeled as disruptive and rude by other moviegoers, and the whole thing broke my heart. At first, I sat there and said “THIS is why I don’t go see movies.” Then I thought…wait…why should I have to feel like this over something I can not control? Why should anyone have to be singled out and denied basic joys in life for something they can’t control?  Because Tourette’s is not something that can be seen by the naked eye aside from Tics, we must find a way to give it a voice. We’ve all seen how fast misconceptions can spread regarding any one thing these days. Let’s use those same channels to promote the right message so that more people can identify TS for what it really is.

Research and development: This is where I’m going to pass around the dish a little bit and ask that you consider donating to the Tourette Association of America during TS awareness month. The reason is as simple as being able to fund not only more vessel of awareness, but research that helps even the medical community better understand TS. For a long time, it was nearly a medical mystery. We knew what it did, and what it affects, but had no rhyme or reason or a chain to link it to a post with. In recent years many breakthroughs have been made, and important studies done that are related to genetics and prognosis. The more we know, the better we can fight this.

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Yes, people still call it the swearing disorder: I know I’ve touched on this in blog’s past, particularly after the Sharon Osbourne incident, but it continues to be the biggest and most harmful misconception about TS. It isn’t so much the swearing part of it. 10 percent of people with TS experience coprolalia and it is unfair to deny this. What is most damaging about this is that people think TS is ONLY swearing and will deny that you have TS if you do not swear. It’s hurtful to those with TS, and the community as a whole. It all loops back around to using channels of informing for the good of something besides ourselves. It feels pretty good to do so 😊

If you missed my last entry, I had to postpone my TS Awareness virtual walk event due to flooding in my home and the financial burden of it…I promise I WILL reschedule this ASAP and post the new date here.

There are is many ways to spread awareness. Whether it be sharing a blog such as this, sharing an informative article, sharing a story of you or anyone else who has TS and how the lack of information has had an effect, or by donating to TAA. It isn’t a competition of who can do more.

All that matters, is that we each do something.