My Tourettes

This is copied from my Facebook. I did this post last year, and thought I’d share it here to kick off the posts I’m going to be doing about TS

 

So, because I’ve been asked before, I’m going to tell you about me and my Tourette Syndrome diagnosis, and what life is like, for me, living with it. I was officially diagnosed at age 10, but had shown symptoms since I was 3. This is the definition of TS from the website http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm which is the site I refer people to the most who want to read up on it. It has most of what you would want to know to somewhat understand the disorder
Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette, a French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman. The early symptoms of TS are typically noticed first in childhood, with the average onset between the ages of 3 and 9 years. TS occurs in people from all ethnic groups; males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics. Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst tic symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood.
The first symptom I had which started at the age of 3, is the most common first symptom. Eye blinking. At first my doctor thought that I had a bacterial infection in my eyes, so they prescribed a medication that my mom washed my eyelids with at night, then put a paste like medicine on afterwards. I still remember my mom “washing my eyes” every night. It was a refreshing feeling. It wasn’t until later on that my tics became more severe and prominent. I started making sounds in my throat, and had a tic in my stomach that when sitting down, would jerk me to the point my chest was almost touching my knees, then I would sit up again. I remember sitting in the pews at church, constantly ticcing forward and being embarrassed that the people around me were watching. Then came the shoulder shrugging, the head jerking, blinking, winking, honestly, I’ve had so many different tics over the years I couldn’t even tell them all to you. They start randomly, and go away randomly. We moved to Santa Maria from Fresno after I finished second grade for my dads job. I was homeschooled from 3-7th grade due to my parents work schedules, and the fact that the private school in town didn’t have any openings. Looking back on it now, I’m so grateful I was homeschooled, because the years that I did go to a normal school were horrible. I wanted to go to school for Jr High, so my parents sent me to Orcutt Jr High. I withdrew half way through the school year to do private home study, a big part of the reason being how horribly bullied I was. I had never been on medication for it until that point. I remember coming home from school every day and going up to my room and crying. It’s amazing how cruel people can be. There was a boy in particular, I still remember his name, that would follow me around at lunch and during breaks and just torment me. Constantly mocking, pointing, mimicking me. I begged my parents to put me on medication. I wanted to be “normal”. I was homeschooled again for 8th grade, but wanted to go to high school at a regular high school. I wanted to have the experience of going to dances and football games. Some of the other kids there were just as mean. I had gotten a bit of a tougher skin by then, I was used to being stared at and watched and imitated. Some people came up and asked me about it, and I was more than happy to talk about it. I actually had a few teachers ask me to do speeches on it in class. But because I was so used to being made fun of, I was painfully shy. I was the freak. I always sat in the back of the class if I had the choice. Some of the teachers were incredibly amazing, and I’ll never forget their kindness and understanding. The school had been notified of the fact that I had it, and that sometimes I would just need a few minutes if it got too bad or overwhelming to go in a conference room to sit and “tic it out” You can suppress a tic, but only for so long. Imagine having an itch. You can ignore it for a while, but eventually you need to scratch it. It’s the same with the tics. But once you let it out, it’s much, much worse. After holding them back, when they come out it’s more violent. I wanted to appear “normal” so I would hold them in as much as I could. I would hold my body as stiff and rigid as I could and try and not move at all. It’s physically painful and exhausting and often made concentrating in class difficult. One of the teachers, Mrs. Gregory, on my first day of freshman year pulled me aside before class started. She told me that if I ever needed a break, if it was a presentation day and it was a bad day for me, to just let her know, and she would be happy to let me postpone it to the next day. I’ll never forget that. She asked me if I had a preference of where I sat, to make me more comfortable and relaxed. The world needs more teachers like her. To be honest, every teacher there sans one, was incredibly kind and understanding. There was one my sophomore year who thought it was funny to watch me tic so he would stand behind me (I sat in the last seat in the row due to alphabetical order) long enough to make me uncomfortable to make me tic more. When you’re stressed or tired, your tics become worse. My mom asked him about it during parent teacher conference, and he said that he found it amusing and that’s why he did it. I was happy when the semester ended and I didn’t have to deal with him again until the next year. I had an amazing group of friends who defended me constantly. I was still bullied there, and typically let it slide until I got home and then as usual would go up to my room and cry. There was an incident senior year that hit me harder than most of them did and I ended up going into the dean of students office and crying an entire class period. High school isn’t easy for most people. It’s an awkward time in your life and you’re trying to figure out who you are. I considered dropping out and homeschooling again more times than I can count. But I’m glad I didn’t. It helped me to grow and become who I am today. I definitely didn’t enjoy it, and was glad when I was graduated and it was over, but looking back at the experiences has helped to make me more of an understanding and compassionate person. I don’t judge people for who they are or what makes them “quirky” because I know what it’s like to be the quirky one that no one understands. There have been some tics that impair my ability to do things. I worked at a yogurt shop for almost 8 years. At one point, I got one in my wrist that when I tried to pour toppings on the yogurts, would fling them instead. I learned to joke and make light of it. Because if you don’t laugh you’ll cry. My husband has been an amazing help to me. I never knew if I would find someone because I felt like I was faulty or broken and that no one would want me. He has never once in the 10 years we’ve been together, and the 13 years we’ve known each other made me feel like I was any different from anyone else. He never looked at me like I was weird or a freak. He helped me to be comfortable in my own skin. He knows that I can’t pour things well because of the tic in my wrist, and putting food into containers at restaurants can be difficult sometimes so he always does it for me. He can see when I get stressed and they get bad and if we’re in a social situation will encourage me to go somewhere and take a few to relax. I have some tics that still come and go, and that now I’m a parent scare me. I get some where I blink so much that I can hardly keep my eyes open long enough to see much of anything. I have one where I jerk my head to the side and it makes me so incredibly dizzy and I have a constant head and neck ache. Simple normal everyday things become difficult. It’s hard to read or see or walk straight when your head is constantly shooting to the left or right or jerking upward. So I get scared about carrying my son and falling and him getting injured. I had to go off of my medication to get pregnant and breastfeed because the med I was on is incredibly harmful to a baby. I was terrified even though I told everyone I was fine. I had been on medication for 17 years. I had no idea what my tics would be like being off of them since they had helped so much. It doesn’t bother me anymore when people stare at me. I honestly don’t even notice it anymore. But the fear of not knowing how bad it could be or how much pain I could be in was suffocating. My husband was so incredibly supportive. Luckily there wasn’t much of a change so I decided not to go back on them. I’m managing them ok so unless they get bad I’m ok with being off of them. People will ask if it’s painful. Yes it is. Think of it like this: you’re working out, and your muscles are tired and sore from the repetition. Naturally you would stop. Well, with this you cant. So I have days where it feels like my muscles are on fire. Over the counter medication typically doesn’t help, and I refuse prescription pain medication. Too bad massage is so dang expensive haha. As a kid I wished I didn’t have TS. That I could get rid of it. There is no cure. Now, I wouldn’t get rid of it if I could. It’s part of me. It’s made me strong and made me me. I’m a wife, daughter, sister, aunt and friend. I’m extremely sensitive. I’m a real person who has feelings that can be hurt. But because of all of it I’m compassionate and I can understand pain in others. And I’m happy with that.

 

 

 

 

Life the last week

Hi everyone! Hope you’re all doing well. The monkey is napping and one of the dogs is curled up with me on the couch, so I have a chance to sit down and do a post. Here’s what’s been going on here the last week.

Lots of the normal day to day; wake up, make coffee, play with the kiddo, pull my hair out, chores, food, bedtime and repeat. Sometimes I get to shower. And once in a while I put on something other than yoga pants and an old shirt. Those are the days I actually have myself together. Which lets be honest isn’t often. We had our “second parents” come up for the weekend. They did a local 10k so they stayed with us since they live a little over an hour away from us. On Sunday Brent and I made our Costco run and I met another baby wearing mama and we hit it off. We exchanged Facebook info, and are looking forward to a play date for the boys soon. Jace has gotten very good at tantrums. I keep telling him dude, you’re barely a year old! Too soon! But of course you can’t reason with a toddler. Good thing he’s so cute 😉 I’m tired, but that’s basically the normal now. He doesn’t sleep through the the night all the time yet so consistent broken sleep makes life hard sometimes. I’ve got a surprise up my sleeve for next week, so super excited for that. I’ll dish on that later 🙂 Discovered Jace REALLY likes The Lumineers, so that’s been playing a lot and he rocks out on the regular. Trying to think of what to do for Brent’s birthday next month (32!) and our anniversary 2 weeks later in June. Hoping to get over to the coast to see my friend who is on leave from the Air Force for a couple weeks. It’s been 7 years, so it’s time! Finished a book for my bo0k club on Saturday and loved it! It’s called A Discovery of Witches by Deborah Harkness. If you’re a reader, check it out. Well that’s all I’ve got for now so here’s a few pics from the last week or so. And as always, if you like what you see, feel free to share the blog!

 

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Tourette Syndrome

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Ok, so Tourette Syndrome awareness month starts next month. I wanted to open this up to any questions anyone may have about the disorder. Anything at all, and I’ll answer them to the best of my ability. Every year I ask if anyone has any questions or things they may be curious about. Education and awareness is key to understanding  🙂

 

Truths about Motherhood

So there’s a lot that comes with being a mom. Everyone knows about the sleepless  nights, sick kiddos, never ending laundry.  Here’s some other facts about being a mom that I’ve learned in the past year

 

Teething will be the bane of your existence. It sucks. Majorly. For everyone involved. You hate that they hurt and there’s not much you can do about it. You’ll be exhausted. They’ll be exhausted. Everyone will be grumpy, and you’ll snap at your partner. But it will pass

 

There will be poop. Lots of it. Everywhere.  And at the most inconvenient times. And if you’re a mom to boys, pee too. Always cover the junk when changing diapers. ALWAYS

 

There will also be lots of puke. After a while you don’t even notice the fact that you’ve been walking around all day wearing a shirt that has puke, and probably poop on it too. Noseblind-ness is a thing

 

You will live for nap time. A chance to shower, go to the bathroom alone, breathe for two seconds, chew your food instead of inhaling it. And eat that candy bar you’ve been hiding like its the last one on the planet

 

Your house will be in a constant state of disarray. Sadly it probably won’t change till they leave for college, so just accept it

 

You’ll fight with your partner. A lot. About who gets more sleep, does more household duties, gets more downtime. But you know what? One day you’ll see them playing with your child, and your heart will completely melt. You’ll see the love they have for their baby, and you’ll forget all the fights.

 

The first time they laugh and smile, you pretty much die. And the first time they say mama, you turn to mush.

 

The smile you get every time they wake up and you walk into the room, or when you get home from work or running errands makes you forget all the frustrations of the day. The way your child looks at you will never compare to anything else

 

Motherhood is tough. It’s emotionally, physically and mentally exhausting. It’s sticky kisses and handprints on the windows. And it’s the best damn job in the world

 

 

 

 

 

A little about me

Hi! Ok, here’s a bit about me and my little family for those of you who don’t know me. I’m a 28 year old SAHM of a little boy. I have Tourette’s Syndrome, and was diagnosed at age 10. Since then, I’ve become an advocate and educate about it as much as I can, trying to rid people of the common misconceptions of the disorder and the stigma around it. I learned to read at the age of 4, and haven’t stopped since. Those who know me best know that my life isn’t complete without books and music. My music tastes lean toward Rock and Alternative, but I do like pop and Indie. I can’t stand country music, and I’m not a huge fan of rap though I do like some. I’ve always liked coffee, but since I became a mom, it’s a necessity if everyone in my house wishes to remain alive 😉 I have a lot of dreams and aspirations. I want to be a photographer, start a non profit to help the people of Africa, become an American Sign Language interpreter. Someday I’ll accomplish them all. I’ve always loved sign language since I was young, and when I took my first class in 2007, I was hooked. I had planned to finish school and get certified when life got in the way. Someday I will go back and finish, but for now I’m teaching my son and studying when I can. I have an intense love for the culture and language. It’s so incredibly beautiful, and the Deaf community is amazing. I look forward to the day I can finally do what I’ve dreamed about for the last 9 years.

My husband and I met in 2002 working at a summer camp up in Yosemite for kids with asthma. We were friends right away, but didn’t start dating until 2005. That camp had such a huge impact on our lives. It’s honestly one of the greatest things I’ve ever done, and the memories from there are some of my most treasured. Our camp family is still in our lives to this day and I don’t know what we’d do without them. We lived 3 hours apart from each other, and were long distance for 5 years, until we got married in 2010.  I lived on the Central Coast, and he was in the Central Valley. He’s pretty much the best person ever. He helped me through some dark times, and I don’t know what I would have done without him. We have one son born in 2015. He’s an incredibly happy baby and has such a personality. He makes everyone around him happy. I think of him as sunshine in human form.

 

Well, that’s all for now, nap time is almost over. I hope you like what you see, come back and say hi!!