M!ssundaztood

"I can run just as fast as I can to the middle of nowhere, to the middle of my frustrated fears and I swear, you're just like a pill instead of making me better you keep making me ill...."  

It's perhaps ironic that the song Just Like a Pill by P!nk was one of my favorite songs to run to during the winter of 2002/2003.  The upbeat tempo combined with the lyrics were just so awesome to run to.  I'm sure P!nk didn't intend for this to be a "running song", but for me, every time Just Like a Pill came on the radio that winter, I felt this rush of adrenaline and got this endorphin high that helped me push through my workouts despite below freezing conditions.  My running got better and better.  I set a few 5k personal records that winter. I reached two of my three goals for the Lockport Y-10 in February 2003 -- clinching my age group and finishing in the top 10 for all the women in Buffalo's toughest 10 mile race.

A month later, everything started to change.  My foot cramped up, my neck went into spasm, and my body started to tremor.  As I traveled from doctor to doctor, I realized no one knew what they were doing.  Just Like a Pill took on a whole new meaning, and it wasn't positive or upbeat.  No one was making me better.  Doctors were pushing pain medications that didn't work.  A neurologist put me on steroids and Betaseron for my "multiple sclerosis".  I got so sick from the treatments, and I felt like no one cared.

No one was making me feel better... everyone just kept making me ill... I wasn't crazy; I just had dystonia.  I was finally properly diagnosed in December 2004. But to this day, no one knows what dystonia is.  It's "m!ssundaztood".

Now, nearly 11 years later, I am still "m!ssundaztood".  I can't explain what's going on with my brain and my body and the brightest medical minds can only theorize and speculate each individual case as no two people with dystonia are alike.

Coincidentally, there is literally a pill that makes me ill.  Unfortunately, it is one of the only pills that helps my dystonia.  Klonopin slows down brain chemical activity.  Some side effects of Klonopin are sedation, dizziness, weakness, unsteadiness, depression, loss of orientation, headache, and sleep disturbances.  I have been on klonpoin for nearly 10 years and experience all of these symptoms along with grogginess and anger.  Here's a YouTube clip regarding Stevie Nicks' dependency on Klonopin, prescribed by her doctor.  She describes it as "more deadly than coke".

I'm not myself while on Klonopin.  I think I function about 60% cognitively in comparison to where I was when I was 20 years old.  I get so sleepy and lack creativity.  I'm "m!ssundaztood" by so many regardless of whether it's the dystonia, the drugs or a combination of both.

A couple of years ago I attended a New Years' party with a bunch of people from Checkers AC.  Most of them were my parents age or older.  I had trouble making it to midnight.  As the crowd dispersed for the evening, a number of people asked me, "Hey, are you coming to our 'resolution run' tomorrow morning?"  I laughed -- were they kidding?  I was beat -- weren't they?  Looking back, they were serious.  I was in bed the entire next morning.  A lot of those folks got a few hours of sleep after a night of drinking and partying, and then went out running the next morning.  I was only 28 years old.  Runners in their 70's at the party didn't get me...  I'm finally understanding that they can't.  Dystonia and the drugs like Klonopin rob you of the person who you are.

For the past three years, I've attended the Niagara University President's Ball with my husband and his department.  My husband facilitates everything for the people in attendance at our table.  It's his job.  The ball is held at the Seneca Niagara Casino and is a really great event.  I always try to be on my "A-Game", but by the time the dinner and speeches are over, I'm ready to call it a night.  I need to head to the hotel room and sleep. The folks at our table understandably want to make the most of the evening by having a few more drinks while heading to the casino. This includes the director of the department, who is in his late 50's and has MS. What do they think when the account manager's wife isn't feeling well?  Nate and I retreat to our hotel room.  Nate receives text messages from concerned colleagues, "I hope Nicole feels better."  It's like I put a damper on the evening every year. I hate what I do to people... but at the same time it's not my fault.  

The anxiety depression that dystonia and perhaps klonopin cause is the most difficult thing to deal with.  I know there's an intelligent, energetic person inside me, but that person has been dormant for years now.  I wish that person would come back to be the person who isn't so difficult to understand... the person who isn't "m!ssundaztood".  Eight years ago I ran into an old high school classmate who did not recognize me at all.  After jogging his memory a bit, he said, "I remember you!  You were a runner; I remember you were really vibrant."  Yes... vibrant... that was me a long time ago now.  What I would give to have that version of myself back.         

I finally opened up...

...and then I just wouldn't shut up.  I was a quiet , soft-spoken girl who was afraid of her own shadow until about 26 years of age.  I stopped being afraid to talk to people around then.  The problem was, I just couldn't stop talking.  I still don't stop once I get started.  I've been told that it's enough to drive a saint to sin.

Not only have I been told directly, but I've had nonverbal cues and even completely lost my train of thought while trying to tell stories.  There's a supervisor in my office that I took the train in with for a while.  I'd be so excited to see him every morning that while I was yakking away, I neglected to take notice of the fact that he had a book open in front of him.  He'd always end up closing it, with the realization that he was not going to get any reading done as long as I was on the train with him.  He never complained about it, but it just hit me one day recently,  "He didn't want to talk. He wanted to read."

Today I broached the topic of how I talk too much with the new guy in our office.  I was probably on my third long-winded story with this guy since his start day on Tuesday.  I stopped in mid-sentence and laughed, telling him about the train incidents with his supervisor and how I talked to him too much as well.  His supervisor peeked his head out of his cube and said, "Now when I try to read on the subway, I just fall asleep."

I am well aware of this problem, and yet I still somehow am not conscious of the fact that I am doing it as it is happening.  Then I wonder why I don't have many close friends.  I'm nearly impossible to have a conversation with, though I do listen to people.  I do care.

I'm entering another long weekend.  My husband has to work again.  I don't want to feel sorry for myself, but I guess I kind of do.  I am not an easy person to be around, and I'm often living in a fantasy world designed in my head.  I need a reality check.  I need a new project and a reason to get out of bed tomorrow morning.  Right now I just don't have any idea what I'm supposed to be doing to keep myself occupied and happy.

It's not like the movie "13 going on 30"

It was almost ten years ago I saw the movie "13 Going On 30."  I drove my little sister and a bunch of her then middle school aged friends to the theater and decided to join them.  I was the "adult" of the group.  It's hard to believe how much time has passed.  For my 30th birthday, I had told my husband I wanted that movie on DVD.  He reminded me I already had it.... and also that he would never watch it with me.

I won't go through the whole story line of the film, but I think there are some good messages in this chick flick.  Appreciate who you are and what you have in life. Don't try to be something you're not.  Celebrate the person you are and keep a positive image of yourself, because it only gets tougher when you're older.  As adults, with women especially, it can be vicious.

I was a lot like the "young" Jennifer Garner in the movie - the 13-year-old.  I hated myself.  I didn't think I was smart.  I didn't think I was pretty.  I thought I was a terrible soccer player and a worthless musician. I focused too much on what Girls on the Run coaches call "Negative Self Talk."  Basically, putting myself down at every opportunity I had.  I actually believed these things I was telling myself.  The few close friends I had were generally guys, which girls thought was weird.  I didn't want to be me.  I wanted to be anyone but myself.

When I was 13, there was no Girls on the Run program.  In fact, GOTR has only grown in Buffalo over the past few years.  I jumped at the opportunity to be a coach at my old middle school in 2011, assuming it was just a running program.  I learned it was so much more than just running.  In fact, running was actually secondary.  GOTR is a curriculum-based program that covers a wide variety of topics including having a positive attitude, community service, bullying, eating disorders, peer pressure, stress, gossiping and so much more.  It was the kind of program I needed when I was young.

If you continually put yourself down from elementary school through college, you'll have problems. Life doesn't magically change when you get out in the real world.  You can't go back in time and change things.  Things aren't magically better when you're 30!  What you can do is start accepting and appreciating the life you were given.  It's really not all that bad... even while battling dystonia.

So obviously there's a point in my writing all this.  Only over the past few years have I been able to open up a little bit.  A woman I work with was baffled when I'd visit contractor facilities, walking with my head down, barely making eye contact with anyone, and being too afraid to speak.  I was afraid of sounding stupid.  At 24 years old, inside, I was still that timid little middle schooler who disliked the person she was, despite all the good things I had in my life.  At 25, I started dating my now husband, and he and his family certainly helped me to be able to open up.

That notwithstanding, I still face the same kinds of problems I did as a middle school student.  Unfortunately, I'm dealing with supposedly adult women.  I interact with women who think I should spend a certain amount of money on my clothes, hair, and make up.  Women who can't comprehend that I'd rather wear fashionable children's clothing than spend an arm and a leg on designer petite outfits with matching shoes to go along with them.  I deal with "grown ups" who don't fully understand what I go through with my health and how materialistic things have become much less important to my overall happiness.

I'm not really okay in life, but in a strange way, that's okay.  I am living, breathing proof that people can live a life of simplicity and still be happy, even while battling an incurable neurological disorder.  So, if you're reading this and are unhappy with your jewelry, your clothes, your car, or the brand new gadget that's already outdated, you're missing out on something in life.  Wake up and take a look around you!  The world can be a cruel and unfair place, but  you have the power to make not only yourself happy, but the world a happier place.  The decision is yours.  You only live once... make the most of the time you have on Earth and do something good with your life.  Make it your mission. Don't wait until your life slips away -- choose to be happy now!

Hands

The subject of this entry is seemingly bland. In fact, if you retrieve the singular definition of the subject word from the dictionary, we'll really start to fall asleep.  So, let's start by doing just that! Here are a couple of definitions straight from dictionary.com:

hand  noun

1. the terminal, prehensile part of the upper limb in humans and other primates, consisting of the wrist, metacarpal area, fingers, and thumb
2. the corresponding part of the forelimb in any of the higher vertebrates

Exciting stuff, right?  Way to state the obvious, Nicole! But... let's think a little deeper.

There is so much to feel down about these days.  War.  The economy.  Debt.  Stories about infidelity, greed, cruelty, illness, family falling-outs, jealousy.  Honestly, the list of all of the bad things in the world today is virtually infinite.

So, what does this have to do with hands?  Well, let's start here... what can we do with our hands?  How can we positively impact the lives of others through the use of our palms and a few digits?  Why is this so important?   How can we make the world a better place through our hands?

First and foremost, we need to reference & utilize item to the left in order to put our own hands to positive use.  I'm not a holy roller, really.  I don't press my religious views upon anyone.  However, I do believe when we put God first in our lives, leaving all of our worries, problems, hopes and dreams in His hands, we'll find peace. Really.  I know that's very hard to believe most of the time, but I really think it's true. Regardless of your religious denomination, trust God.  Everything is in His hands.

"Let go and let God? What's that got to do with our hands?"

Text from husband...

Our hands. The smallest and simplest actions and expressions of love can be demonstrated through the use of our hands.  Waving hello to someone.  Holding the hand of a loved one.  Giving the peace sign.  Picking up the phone and giving an old friend or family member you haven't spoken to in a while a call.  Texting someone to tell them you love them. These simplest of gestures can be expressed through the utilization of our hands, and they can all make a huge difference in someone's life, even if we don't realize it.

Fr. Francis presiding at our wedding

Laying of hands. In July 2010, my then fiance and I were in church.  Our wedding was about two months away.  I'd had probably the most successful Deep Brain Stimulation for dystonia that my doctors had ever seen about a year and a half prior.  My dystonia was basically gone.  I didn't consider myself a medical miracle, but rather extremely fortunate to have incredible doctors and a form of dystonia that responded so well to deep brain stimulation.  That day in church, my left foot cranked in at the ankle.  I was in a near panic.  As I hobbled to communion, tears started to stream down my face.  Why was this suddenly happening?  Would I be able to walk down the aisle in October?  I'd needed a few "tweaks" now and again for back pain, but I had not experienced anything like this since pre-DBS.  The priest, Fr. Francis, a really awesome member of the clergy at our church was presiding that day.  He's very contemporary for someone of his generation.  He was also the priest Nate and I had scheduled to preside at our wedding.  He kind of sounds like Ed Wynn -- you know -- the "I love to laugh" guy from Mary Poppins.  He noticed my tears.  This 70-something-year-old man cared so much about my pain, that he asked me and Nate to please stay after Mass so he could pray with us and anoint me with oil.  After church ended, he brought us back behind the altar and asked what was going on with my dystonia.  Fr. Francis called over to another priest, Fr. Paul, and asked if he would pray with us.  Fr. Paul was/is awesome; former Air Force. He actually recently left the priesthood, but he's still just such a cool guy.  They laid hands on me and prayed, anointing me with oil.  Fr. Paul motioned for Nate to come over and join them.  The sense of peace and comfort I felt was awesome beyond words.  The love and compassion demonstrated by these men was something I did not feel worthy of, yet they offered it anyway.  It really helped me, if not physically, at the very least emotionally.      

Letter from neurologist to me & hockey ticket

My neurologist's hands. Writing a letter and sending an expensive gift is not something that many doctors would do for their patients.  My neurologist, Dr. Guttuso, knew I loved hockey.  Sometimes at my appointments, we'd chat hockey more than actually have an appointment.  In 2008, there wasn't much he could do for me anymore except for refill my medications.  I needed DBS and I was terrified. All other options had been exhausted.  I was no longer even responding well to Botox.  Dr. Guttuso was so proud of me for pulling though that surgery -- he wrote me the nicest letter and along with it, sent a pair of his season tickets to a Sabres game.  Ryan Miller shutout the Toronto Maple Leafs 5-0 on February 4, 2009.  Thomas Vanek scored a hat trick.  I threw my hat in excitement, despite my shaved head from the DBS.  The hands of my neurologist wrote me a letter and mailed me tickets, yet another act of kindness demonstrated through the use of hands.


My hands. Having dystonia is no picnic.  Today has been an extremely bad day for me.  I'm

"In the end, only kindness matters..." ~ Jewel

chalking it up to the cooler, rainy weather.  My back and neck have a mind of their own and it is extremely painful and debilitating for me at the moment.  Still, I'm trying to remain optimistic.  There are people out there who have it so much worse than I do.  These are the people I need to help.  Others can benefit from my helping hands despite my disability.  I need to keep that in mind whenever I start to feel sorry for myself.  I can donate to the poor, volunteer, advocate for dystonia, and of course use my hands to type away in my blog.  With my head, my heart and my hands combined, I know I have so much to offer in my lifetime.  I just need to be open to everything it is that I am being called to do.

The Evolution of Human Interaction via Electronic Communication

During my junior year of high school, I had to write an essay about how technology was adversely impacting our society based on a reading assignment provided.  It was an in-class assignment for English 11 that I completely bombed.  I'd never minded spur of the moment writing assignments in high school.  I've always loved flooding paper with my thoughts and opinions, but in 1999, this was a difficult assignment for me to comprehend.  Now, in 2013, this would have been a simple essay. The way people interact with each other today has drastically changed since even I was in high school.  That really wasn't all that long ago.

Cell phones. iPads. Kindels. Blackberrys. iPhones. Facebook. Twitter. Texting. When I was in high school, when someone said "cell phone" you'd typically think of a cool portable phone. Generally speaking, only wealthy people owned them.  Cell phones were large with big antennas. So large, people carried them in bags.  They were cool... but you looked like kind of a dork while using them...

 Texting? That wasn't even a word.

I have a Verizon flip phone.  It's five years old, and doesn't even have a camera.  I only pay about 50 dollars a month for use.  I can slip it in my pocket, and people can pretty much reach me any time.  I hate texting.  In the time it takes people to text me something of a complex nature, it could have been communicated verbally in less than half that time. 

That notwithstanding, I still do think smartphones are kind of cool.  You can play games, access the internet, go on Facebook, Tweet your thoughts and communicate with the world in so many awesome ways.  Hell, you can even meet new people on your phone while sitting alone in your office at work!  Yeah, definitely cool.  But at what expense?

This form of communication is replacing the most important kind of human interaction- People talking to each other vis-a-vis and being fully aware of the importance of life as it exists around them.  Human beings have become walking zombies, not paying attention to both the beauty and the suffering of the world as they pay more attention to the smartphones out in front of them.  How many people do you see walking with their heads up on a busy street, smiling and making eye contact with others?  Shouldn't that be the norm?  

In my experience, I've found if you so much as dare say "good morning" to an individual with their phone out in front of them, it's considered rude.  How dare you intrude upon the personal affairs that are literally going on in the palm of another's hand?  Portable electronic communication is now seemingly far more important than human contact.  It's sad, really.  It's like, "Hi, I'm here. Can you maybe put your phone away so we can sit and have a conversation together? Or is the phone on the table more important than the fact that I'm here with you now?"  Really, this kind of thing happens to me.  I don't think I'm being rude or unreasonable in asking this of anyone.  I'm being realistic.

Smartphones also take away from being aware of your surroundings.  Paying attention to what's going on around you is important to being human.  I feel like people need to walk with their heads upright a little more and just see the world as around them.  Imagine the difference you could make in a person's life who might be hurting inside and expressing that through tears rolling down their cheeks?  I know from experience that a simple, "Are you okay?" from a complete stranger can mean so much.  A hug from a friend who sees pain in your eyes without your even having to say a word is just so special.  Now, you could bypass a friend in pain, or maybe someone who just needs a hug because you're too busy checking out what's going on with the rest of the world on Twitter.  Twitter doesn't make us human, acting human does.  Interpret that as you will. 

With all of that being said, I still love how small the wold has become with social networking.  I've been privileged to connect with so many awesome people through my blog, my old (and new) Facebook accounts, and Twitter.  If I'm important enough to connect with someone online, especially in a dystonia community, we'll meet.  If I'm not, then so be it.  But when I'm with you, please put your Smartphone away.

Last Friday I had the privilege of accompanying a new friend I met via my blog to Frontier Field in Rochester in order to promote a fundraising event - Toss for Dystonia.  If it weren't for Facebook, Blogger, and Dystonia BloggerMania, we probably would have crossed paths at social functions through work for years and never have had said a word to each other.  It ended up being that the world was just really small and dystonia was a commonality in our lives.  What I noticed at Frontier Field as I tried to help advertise, was something a bit awkward to me... people paying absolutely no attention to anything around them... heads down... with their smartphones in front of them.  How do you approach someone like that with information about a fundraising event?  It's like... you can't.  I couldn't.  I didn't.  We met all kinds of people, but for me, personally... these smartphone folks were the most unapproachable.

I'm not anti-technology. I can't forget how important Facebook was just a few years ago, when my now husband found me. I had not seen him since high school.  Despite the fact that we lived less than a mile from each other at the time, we had not seen each other in over ten years.  Thanks to Facebook, we were able to reconnect and become close friends, and eventually husband and wife.  After that, I'm not sure how useful I found Facebook. Other than for dystonia support, I didn't really use it. That's why I have only 28 friends on my new Facebook account.  I want to live a life apart from it.

I guess what I'm trying to say is that there should be a balance between technological communication and actually acting like a real human.  What that balance is, I'm not really sure... but I do know what it's not.

Reflecting on Life and Appreciating Each Day

Oftentimes, I forget how good I have it.  It's easy to become jealous, bitter and simply angry about the hand I've been dealt.  Dwelling on my pain and disability and trying to blame someone or reverse it is a waste of time and energy.  This weekend I had a wake-up call that led me to realize how precious it is to be able to feel the warmth of the sun on my skin, a cool evening breeze, or enjoy looking up at the sky during an evening sunset.

Thursday afternoon, traffic was crazy.  I assumed it was because President Obama had been in Buffalo and that perhaps the traffic was still slow.  I had a 45 minute drive home that would normally only take 20 minutes.  I started dinner a bit later, timing it so it would be ready for my husband when he got home from work.  I got a phone call around twenty after six.  It was my husband.  "I had to get off the thruway.  There was an alert up and I saw traffic ahead at a complete standstill.  Fortunately, I got off in time, but it's going to take me a bit longer to get home.  I guess Obama wanted to go to Mighty Taco," he joked.

On Saturday, as we walked to get coffee together, Nate said to me, "Oh, by the way, I found out what that traffic was all about on Thursday."  "What was it?" I asked.  "A 12-year-old was riding his bike to football practice.  He rode out into the street as the turn signal went on.  A car driving into the intersection ran him over.  I mean, it was his fault... no drugs, alcohol, or cell phone use... and about 10 people helped roll the car off of him, but... it was too late.  It was just a terrible accident."  

I don't know what happened inside, but I just felt this overwhelming sadness.  Here I was, walking with my husband, breathing air, and enjoying the sunshine... and a child who had not yet even begun to live was killed.  Life was going on, and I knew parents, schoolmates and friends were grieving.  Who was I to ever complain about life when it's so fragile?  I later found out that my uncle had this young boy as a student at Hoover Middle School.  My uncle elaborated, "He was conscious and calling for help.  His leg was badly broken at the knee.  He was able to tell the police his name and address.  I'm guessing he just died from internal injuries.  He was a good kid... popular.  The start of this school year is going to be rough."         

I then thought about a 13-year-old girl named Erin who lived down the street from my parents.  A couple of years ago, she and two friends were playing on a school playground.  They had all just celebrated their 8th grade graduation the evening before.  Erin had a lead part in a dance recital the next day.  On their way home from the playground, the girls ran into the median of a busy street.  A car stopped to wave them on.  A woman driving a jeep didn't know why this car had suddenly stopped and quickly drove into the outside lane to avoid slamming into it.  Two of the girls were hit by the jeep.  Erin would not dance in that recital... she was killed.  The roadside memorial is still on the corner of my parent's street.  Again, just a terrible accident.

When I was 8 years old, there was a boy named Benjamin. He was a year younger than me and a student in the classroom next to mine.  He needed to have open heart surgery.  My mom explained to me, "Before the doctors put him to sleep, he told his mom and dad 'don't worry!'  But he was much sicker than the doctors thought.  He died while in surgery."  I remembered who he was back then, and can still picture his face today.  Even as an 8-year-old, I cried for him and I cried for his parents.  He was a little kid, consoling his parents before his passing.  It was just so sad.

In bringing this all together, I am 30-years-old.  I am sitting in my living room, typing on my laptop.  My husband is sitting across the room typing away on his.  It is a beautiful Sunday evening. Peeking through the window blinds, I can see the sun setting through a tree in our yard.  Beautiful.  I am alive.  I don't understand the big picture and why I am alive while innocent children have to die.  But what I do know is that I have control over what I do with whatever time I have left here, by how I treat people, by my actions and by trying to live each moment as if it were my last.       

Roaming through the night to find my place in this world...

Okay, the subject of this entry is utter cheese, unless you're a girl (and a Christian music aficionado).  When I was in high school, I heard this song on the radio, and I had to find it on (then legal) Napster.  I remember listening to the lyrics and thinking "this is me."  I knew so deeply that I needed to hear this song, and find a reason to keep searching for my place in this word...



Somehow I ended up being office coordinator for the United Way Day of Caring in Buffalo, NY a few years back.  I kind of felt "special" when my former supervisor asked me to take the reigns of a guy who retired.  I was reluctant, and even mentioned someone else in the office who I thought would do a better job with this event.  My supervisor pushed me a bit, and I reluctantly accepted her proposition.  I can honestly say at this point in my life, I'm glad she asked me to do this.

This year was my 4th year in charge of our office's volunteer activity -- my 7th Day of Caring in total.  We spent the day at Cradle Beach Camp in Angola, NY, painting a maintenance shed and staining a couple of decks.  I hadn't gotten much sleep last night, due to my sleep patterns being way out of whack and my lower back killing me.  I couldn't sleep for one real reason: depression.

As we painted the shed, a guy from my office and I began reminiscing about our on-campus interviews with Federal Recruiters with the Workforce Recruitment Program for Students with Disabilities.  I told my co-worker how I'd left my interview holding back tears.  Seven years ago, while opening my transcript, a Federal recruiter smiled and said, "Wow!  Look at all these A's."  He proceeded to ask me what my career interests were as he glanced through my resume.  I told him that I was interested in safety and security.  His demeanor changed and he went on to say, "I don't understand how your interests have anything to do with what you went to school for."  He then went on to criticize my resume (which a career counselor helped me put together.)  "Well, we only place about 10% of all applicants.  I'll circulate your resume, but I don't think anything will come of it."  I recall being in a trance as a walked out of the Student Union at UB.  I was stunned and offended.

Here I am, over 6 years later. The recruiter was wrong, but I'm still not happy.  I feel as though my life is slipping away as time passes me by while I sit in front of a computer.  I never wanted a desk job.  I hate sitting in front of a computer.  I knew what I wanted to do with my life and this is not it.  Don't get me wrong, I am extremely grateful for the job I have and I always try my best, but I feel it's not what I was meant to do with my life.  Jobs tend to define people... and I do not want this job to define me because it's not who I am.  I wanted to be a patrolman in the Amherst Police Department.  I wanted to work with kids.  I wanted to coach.  Dystonia robbed me of all of those dreams.  Forgive me for being bitter.

Who am I, then?  I think I'm supposed to be the person I am when I'm my happiest, doing my best, and being the best version of myself.  When I'm working on a project where I can see the impact is has on people, I know that's where I'm supposed to be.  When I'm out for a long run, meditating, dreaming and brainstorming... I'm me.  When a bunch of 10-year-old girls eagerly raise their hands to participate in a GOTR activity, share a story, or run up to me and give me a hug while participating in Girls on the Run... I know that's when I'm at my best.  These activities that make me feel so alive are in stark contrast to what I do day in and day out.  I need to somehow get out of this funk.  I need more of these positive "projects" and activities in my life.  But how?

My job isn't that difficult and honestly, I am grateful.  But my heart is not in it.  My heart is in being a Girls on the Run coach, spending extra hours at home planning activities, watching the girls grow as people and athletes.  It's in coordinating activities like Day of Caring.  I enjoy volunteering in atmospheres where I get to meet a wide variety of people.  I love both spectating and volunteering at road races.  I always, always, always like to help people who are trying to do something good.

Right now, I just have my job.  I do not have running.  I do not have coaching.  I just have my job and a house to come home to.  I know all of that is more than so many people have, but I am not where I am supposed to be in this world...

The Loneliness of the Long Distance Runner

I've recently been thinking much about the possibility of psychogenic dystonia/conversion disorder.  I have been tested for every gene possible.  My dystonia is worsening and I would like some peace of mind.   I am going to write an entry a bit haphazardly, and much of it may seem like whining.  In reality, I am simply writing about things that happened to me growing up.  One person can only take so much stress before reaching a breaking point.  We're taught to bottle up our emotions, to stay strong and not cry, even if we're screaming inside.  Did the emotional center of my brain overload and manifest itself as dystonia?  I'm not really sure, and I may never know...

I've known my husband (casually acquainted)  for over over 15 years now.  Actually, our first real date was only five years ago. When Nate walked through the door of Starbucks, the evening sunset seemed to radiate in behind him.  I recall thinking, "I am going to marry him someday."  I wasn't actually quite sure if this was even a date.  Was it two people with common interests and some fond memories of our high school getting together to reminisce, or more?  I had no clue.

Nate is awesome with faces -- too good, almost.  Since he recognizes people and remembers names so well, he used to feel offended when people could not remember him.  Some time after we had been together, he admitted he never would have recognized me that evening if he had not known that we were meeting.  I looked so different. I looked different because I was sickly, shaking, and barely 90 lbs.

Nate remembered a few things about who I was: I played saxophone, I wore Beatles t-shirts, and I was a cross country runner.  He also said he remembered I was nice (debatable now, I'm sure).  I remembered he was really skinny, played trumpet, and he wore tie-dyed t-shirts.  Nothing else.

Nate and I had very different high school experiences.  In fact, our experiences growing up in general were very different, despite how much we have in common.  Both of us were actually kind of bewildered after talking for a bit, "How is it that I didn't know you back then?"  We had so much in common.  The only practical and perhaps spiritual answer I could offer to both of us was, "It just wasn't the right time."  From my point of view, I had to add one thing on, tears filling my eyes, "I really needed a good friend back then... but God doesn't put us through anything we can't handle in life"

Growing up, I completely lacked self-confidence.  I could not look people in the eye while conversing.  I was soft-spoken.  I never stood up for myself.  I let people copy my homework as they giggled behind my back, gossiping about what an ugly dork I was.  I imploded.  I had no dignity.

I recall in 7th grade, a huge pool party being thrown, and invitations being passed around.  The invitations came with specific instructions - "Nicole is weird.  Don't tell her."  Never mind the fact that the party was being hosted by a girl who lived just two doors down from me.  I've since forgiven her, but I don't think anyone there could possibly understand how much all of this hurt me.  It's like I wasn't human.

Gossiping sucks, especially when things get back to the person, regardless of what is being said is true.  There was an entire school bus my freshman year of high school that talked about me, and it got back to me.  "Nicole sucks at the saxophone.  Why doesn't she just quit?"  Now, that was a milder rumor that went around in the late 90's.  "Nicole is ugly, how could anyone date her?"  Really, it only gets worse.  Things I simply cannot post here.  By the end of my sophomore year, I begged my parents to let me switch high schools.  The mean, subtle pranks became too much.  I didn't know who to trust.

I realized by my junior year that I wasn't just a cross country runner... I was a damn good one.  I was ranked 6th fastest in Erie County Division II Women's XC.  No one cold take that away from me.  I knew the harder I worked, the faster I'd get.  So, I ran and I enjoyed.  I tried to ignore the "Run Forrest, run" comments.  If people wanted to pull that, then they needed to race me.  Running was my escape from EVERYTHING bad.  If someone hurt me, I ran.  More people were using instant messenger, so that meant online pranks and bullying.  On one occasion, I had to file a police report.  I hated my life.  I could only run to escape.  If I didn't do well on a test, I ran.  I just ran.  I ran to combat my problems and momentarily escape from them.  

By my senior year, I continued to run competitively.  I played two instruments in three different bands and was running on empty.  One evening I was waiting for my mom to pick me up.  With a backpack, a bassoon, a saxophone, and an Adidas duffel bag, I had my hands full - literally.  I heard someone offer to hold the front doors of the school open.  As I stepped out the door saying "Thanks", the door slammed in my face and I dropped everything.  I looked to see who it was. He just laughed.  I got my things together and bottled it all up inside.  All the anger.  Soon it would be over and I'd be out of that hell hole and away at college.

Really, my escape to SUNY Albany was just okay.  I was afraid to socialize.  I studied all the time and never missed Sunday evening Mass.  If I had time I ran. Drunken floormates would pass me walking back from the library at 1 in the morning, "Nicole, are you coming from church?"  The stress bottled up.  My neck felt unusually stiff.  Stress?  One evening I was gagging.  Some concerned floormates called 911.  At the hospital, I was diagnosed with a "headache".  Not that I could blame them.  I got to the E.R. and whatever was causing the gagging disappeared.  I believe it was dystonia.

One year away at college, I decided dorming wasn't for me.  I enrolled at UB.  Seven months later, I couldn't walk.  The rest is history.

On that first date at Starbucks, I told Nate much about all of this.  I don't know why.  I guess I needed to get it all out to someone.  Some of the people who he was associated with back then, well, the way they treated me was... well, it sucked.  He just shook his head and said "fools."  I still had my one true passion - running.  Nate loved reading.  He recommended a book to me,  The Loneliness of the Long Distance Runner.  I pulled a notepad out of my purse and wrote it down.  To this day, he reminds me of how impressed he was that I did that.  I never read the book, and I even own the movie!  Maybe one of these days I should watch it... or buy the book... and read it.

Still, I wonder... is my dystonia psychogenic?  After over ten years of suffering, I just wish I knew why this happened to me.  I was supposed to be victorious and leave my shitty past behind.  I was confident I'd have a successful law enforcement career and I'd never let anyone push anyone else around if I could help it.  That would never happen.

Hardware Upgrade & fully Bionic Once Again!

I had obviously been a bit down lately.  The right side of my body had a mind of its own and I just couldn't function normally.  Sure enough, one of my batteries was dying.  My old Soletra batteries lasted over four and a half years!  In fact, my right iPG was still really strong!  Despite my strong iPG, the technology changed so much over the past few years that they needed to upgrade both for compatibility reasons.

Preparing for Surgery 7/22/2013

Yesterday morning, my husband drove me to Strong Memorial Hospital in Rochester, NY  for a bilateral battery replacement.  The procedure went smoothly and on time - 1:00 p.m.  What was killing me was not being able to eat or drink anything after midnight the night before!  Fortunately, upon arriving at the hospital around 10:00 a.m., they got an IV in me pretty quickly to keep me hydrated.  With this brutal heat and humidity we've had lately, it was certainly imperative.

Gauze pads taped over incisions,
and covered in iodine!

There is certainly a night and day difference between yesterday morning and yesterday afternoon after having the surgery.  I remember one of the first things I asked when I woke up was, "are my batteries on?"  I felt like hell.  They were not on.  The Medtronic representative turned them on for me and WOW.  My dystonia is substantially better already.  I'm actually managing my pain from my new batteries with Tylenol.  I don't do well with Hydrocodone so I have no intention of getting that filled.  My chest hurts - a lot actually - but that's to be expected.  I need to make an appointment to go back to Rochester in a couple of weeks to make sure everything is healing up nicely.  Right now it hurts to even lift up my laptop!  I have a 10 lb. lifting restriction for the next month!   Argh!

So, with all this, I'm putting my running career into perspective.  I absolutely love running to the point where it's irrational.  I was supposed to have arthroscopic surgery last Thursday.  I am so glad I fell on that knee, scraping it up, because I kept telling myself I could "tough it out" with the dystonia and that my knee surgery was more important.

I'm taking it one day at a time now.  I don't mind having to put off the surgery on my knee.  I can get to the gym and bike.  I can weight lift.  My knee is in pretty bad shape but there are things I haven't tried yet, or tried only  haphazardly (aside from surgery).  I'll get there.  As for now, I'm not going to rush things.  One day at a time!

Sometimes we fall for a reason... literally!

I am a distance runner, in case I forgot to mention that anywhere.  Last November I decided to train for the Buffalo Marathon.  I ran hundreds of miles, weight lifted, cross trained, and felt more confident in myself than ever.  I wasn't running fast, but I was running farther distances than I ever had in my fifteen years as a runner.  I was also running with a purpose - to raise money for the Dystonia Medical Research Foundation.  I couldn't wait to line up on race day in my Dystance4Dystonia singlet, but that wouldn't happen.

My biggest obstacle throughout my training was my left knee.  I'd had chronic pain in it for about four years.  After my longest training run three weeks prior to the marathon, my knee became extremely unstable, leaving me in terrible pain. Two weeks before the marathon, I knew it was over.  I was more disappointed than I can find words to describe.

I went to my orthopedic surgeon who couldn't tell me much without an MRI.  We let it rest with a steroid injection into the joint to get the inflammation down.  I just recently was able to start walking normally again.  Back at the doctor's office a couple of weeks ago, we made the decision to schedule arthroscopic surgery to remove any loose cartilage and smooth out the back of my patella.  

Then a fluke thing happened.  The day after my appointment, I tripped and fell, scraping up the knee I was supposed to have surgery on.  I panicked, "Oh my God, why this knee?"  I tended to my knee and did everything humanly possible to help restore the broken skin so I could be cleared for the surgery.  Despite my efforts, my primary care physician couldn't clear me.  When you have arthroscopic surgery, the skin needs to be completely clear of abrasions to reduce the risk of infection. I still have a scab.

As of recent, my dystonia has been acting up on the right side of my body as well.  I attributed my flare-ups mostly due to lack of exercise; however, over the past week or so, it's been pure hell.  I've been feeling worse than I did before even having Deep Brain Stimulation.  The fixed positions became tighter and more unbearable each day.

Today, I saw my neurologist/programmer in Rochester.  The voltage in my left iPG is 3.66.  3.64 is where the insurance companies will clear you for a new battery, but clinically, I am ready at 3.66.  My neurologist didn't even want to tinker with the settings for fear of "sucking out whatever juice is left in it."  Providing my insurance doesn't give them a hard time, I could be in the OR as early as next Monday.  The hang-up might be my right iPG, which is holding strong at 3.71.  They need to make a convincing argument that having two pieces of different hardware in me is not conducive to treating my dystonia. My '08 Soletra batteries aren't even made anymore.  The technology is much more sophisticated now.

So, my point?  What if I didn't take a tumble and scrape up my knee?  In a month or so, I'd still be recovering from knee surgery instead of having new batteries.  Treating my dystonia and replacing my hardware is much more important than scoping out my knees.  I suppose I fell for a reason... and a darn good one!

As the storm passed through...

For the first time since I had deep brain stimulation (DBS), I had a storm at work.  I was the spectacle of the office, especially to the folks who started there in more recent years.  I could barely talk through it.

Right ear to right shoulder, right arm curling in, and writhing in discomfort, I barely put a dent in my workload today.  At first I ignored the worsening.  If you don't think too much about symptom worsening or occupy your brain in a way that draws your mind away from an exacerbation, the discomfort sometimes dissipates.   This just wasn't the case for me today.

As I noticed my symptoms start to get worse, I went into our conference room and just put my head down on the table and closed my eyes in the dark. Sometimes a good cry helps.  The next time someone tells you crying won't solve anything, tell them it just might help a dystonic storm!  After a five minute "good cry" I felt a little better and went back to my desk.  I started working again, trying to just ignore all of this.

A girl from the office made this incredibly delicious cake and I decided I'd try a piece in lieu of having my lunch.  I poured myself a cup of coffee and went back to my desk.  My sideways head kind of missed the cup, and I spilled coffee all  over the front of my (fortunately black) dress.  I was slightly irritated at this point.  

The guy who sits in the cube next to me kept asking what he could do to help.  I couldn't even tell him "nothing" as the muscles strangled the right side of my neck.  Some sort of strange sounds came out of my mouth, but not words.   As I used all of my physical and mental strength to force my head upright, the vertebrae in my neck cracked loudly. "Don't do that!" he exclaimed.  

Okay, how about a joke?  I was able to agree to that.  He proceeded to tell a really bad, cheesy joke.  I burst out laughing.  I suppose laughter is the best medicine.  I was able to then, in a strained voice, tell him that I felt like I was being strangled and that this used to happen to me often, but not since having DBS.  He asked when it would stop.  I told him I didn't know... that eventually I'd pass out from the exhaustion of fighting it.

When I got home from work, that's exactly what I did.  Now here I am again.  Fighting this never ending battle.

Hope is a liar, a cheat and a tease

The above video is a Ben Folds song, Picture Window, lyrics written by poet Nick Hornby.  I told my neurologist how moved I was by Ben Folds when I first saw him perform back last October.  My neurologist and I then had a long discussion about how powerful music is. Since the concert, my husband has been buying me Ben Folds (and Five) CDs and sheet music.  I have really grown to appreciate the music of this talented artist.

One particular CD my husband bought me was released during Folds' solo career.  It is called Lonely Avenue.  Ben put music to a number of poems written by Nick Hornby.  Picture Window is a song that touches me deeply, though probably not in the way that Nick Hornby meant for it to do so.

The following lyrics strike me so deeply:

You know what hope is 
Hope is a bastard
Hope is a liar
a cheat and a tease
Hope comes near you, kick its backside 
Got no place in days like these...

When I finished college and landed a decent job with excellent health benefits, I had so much hope. In my twisted body withering away from the constant movement, I still had one thing: hope.  At 24 years old I was still very much dependent on my parents, but I kept moving forward in life.  Despite tremendous amounts of sedative medications, I was a pretty good competitive 5k runner.  I would place in my age group and win a handful of races here and there, despite my physical disability.  I just loved running.

I didn't think much about my trophies and medals.  Nor did I pay much attention to my "slightly better than average" 5k race times.  I found out from a sports writer with the Buffalo News that my accomplishments as a disabled runner were worthy of a full page article that ended up looking like something out of Sports Illustrated.  I was 25 when it was published.  During that time, I had also been approved for deep brain stimulation.

It was because I was in such great physical condition that I was an excellent candidate for this invasive surgery.  While my worries and pain melted whenever I started out on a run, I could not for the life or me sit upright in a chair or sit and eat a meal normally.  I was a mangled, twisted, train wreck of a person.  Still, I had hope.  I was going to have DBS.

In December 2008, I underwent surgery for Deep Brain Stimulation at Strong Memorial Hospital in Rochester, NY.  Within two days of my having the surgery, even before my batteries were turned on, the spasm, the tugging, pulling and twisting were just completely gone.  I didn't even need my medications.  The doctors were amazed.  My neurologist back home in Buffalo would laugh in amazement and joy as I walked upright and passed basic neurological tests with flying colors.  By the end of March 2009, I was on the roads again, running and racing in a body that was no longer held captive by its own muscles.

I'd trek to Rochester to fine tune my programming, but I was generally well.  Slowly, and unfortunately, this amazing response to stimulation began to lose its efficacy.  First in my left foot, then in my right foot, then in my neck.  Four and a half years later, here I am again, trapped inside my body and heavily medicated.  I can't keep up with the housework, my job, and simple daily tasks I could perform just a couple of years ago.  The only explanation given was simply that "sometimes this happens"  and "I'm so sorry."  I sometimes cry because of the loss of hope.  All of this coupled with the struggles of everyday life are at times too much to take.

Now?  What am I clinging onto?  Where is there hope for me?  I know I'm not alone.  I always strongly encourage people who are considering DBS to really understand that it might not work at all, it may take a long time to work, or like my case, it may work briefly and lose its effectiveness.  Only in best case scenarios will it work great for life.

It's actually been a very shitty past couple of years.  Putting up a strong front seems to grow harder every day.  I really do try.  I am going through the motions of life, but barely.  I am at the mercy of my muscles, Botox, and my medications.  I am grateful for what I have, but I want to live before I die... if that makes sense.  Right now I'm just stuck.  I'm losing hope.

Hope is a bastard.

Celebrating New Beginnings and pursuing new and old interests

The past few days have been exceptionally busy and I have needed some serious down time.  I am tired and wired at the same time, which is a weird combination.  But I do need sleep. 

As depicted in item to the left, we had a wedding to attend last Saturday.  My cousin Julie tied the knot.  I honestly could not wait to wear this dress!  My little sister was concerned it wasn't quite age appropriate...      

The wedding ceremony was beautiful.  Julie hired the same vocalist that Nate and I used at our church.  He's like Josh Groban, only better. The reception was pretty good as well, even though I shouldn't have been dancing.  Now, my cousin has most of the movie Mrs. Doubtfire memorized.  Since she seemed to have the DJ playing a lot of modern rap mixed with some slow country I had this crazy idea.  I requested House of Payne's Jump Around.  I mean, the only other Mrs. Doubtfire alternative would have been Dude Looks Like a Lady, which I'm pretty sure wouldn't fly at a wedding. So... there was a lot of jumping.  Did I mention I'm having knee surgery sometime this summer? 

Today I turned 30 years old. Last night I went to Duff's with my cousin Steve.  We met my husband there after he wrapped up his Bazillian Jiu Jitsu class at the training center.  My sister was waitressing, which was cool.  Pretty wired, we called it quits and went home around 9:00.  Nate and I stayed in and watched some TV for the rest of the evening.  I didn't sleep well...

This morning I was woken to my husband bearing gifts.  I first opened two Ben Folds CDs.  Then I was presented with what appeared to be an 8x10 framed picture... when I opened it, it was a picture of Micky Dolenz, autographed and personalized to me!  I had to laugh.  I loved The Monkees and was really surprised by this.  It's the first celebrity picture I have that's autographed and personalized to me!   

We decided to head out to the Original House of Pancakes in Williamsville.  I got a blueberry waffle and Nate got a strawberry crepe.  Then my grandparents walked in.  We motioned for them to come over and join us.

I also did something huge today, given how frugal I am.  Nate and I went to this little music shop in Niagara Falls.  Twelve years ago, for just a year, I picked up my 5th instrument to play in the high school Wind Symphony my senior year.  I didn't get very far in only a year, but I learned to appreciate how cool it could be.  The thing is, I just never got back into it...  but...

I BOUGHT A BASSOON!  The owner thew in a couple of reeds and a beginner's lesson book when I told him my story, mentioned it was my birthday and how I really wanted to learn this instrument to the best of my ability.  I have only completed a couple of lessons, but... here we are!  I need to name her... hmmm...  

I am going to get my pro-model alto saxophone fixed up there when I have the time to drive it out there.  Nate will be able to pick it up on his way home from work during the week.

On the topic of music, I have been very happy slowly getting back into it.  I've been running some very basic scales on my keyboard and have been playing some old tunes just for fun.  This is going to take a lot of time and patience, but I am trying to learn some Ben Folds stuff.  I really shouldn't be surprised that it's a bit difficult.  As much as  wanted to jump into Philosophy... I made it through two measures and realized I wasn't anywhere near that level.

I flipped though the book and decided that Brick would be easy to learn.  Honestly, it's almost too easy... but I haven't played it perfectly yet.  Music makes me feel alive... it's not running, but it's something productive that makes me happy.  I just cannot come home every day feeling sorry for myself...

This evening my mom had us over for a lovely dinner and dessert.  I don't like cake much, so she made this strawberry thing.  She made me a beautiful book of my first 30 years of life on mixbook.com.  I absolutely love it.  My sister got me a Duff's t-shirt and gift card.  My grandparents got my a Tim Horton's mug with a Lebro's gift card.  My grandmother gave me a dollar for each year of my life!  My closest cousin, Steve came and joined us too!  It really just made my evening...   

In any event, I am so excited that I likely will not sleep tonight.  But today is a day I will remember forever.  Life isn't perfect, but it's good.   I truly believe that every time God closes one door, another is opened... I just have to be open to running through it... even if I can't run anymore...

  

The Challenge of Living a Balanced Life with Dystonia

The past few weeks have been brutal.  Since I blew my knee out last month while marathon training, I've been living a very sedentary lifestyle.  Slowly, I have been building up my energy level and boosting my mood by trying to take short walks around the block during the workday, but I end up in a limp by the time I get back to the office.  It's been a tough past few weeks, and even when I have my knee scoped and my IT band elongated, I am going to be in for a long recovery.

I do not think there is a withdrawal that is much worse from the high one gets from exercise.  Whether it's a "runner's high" or an endorphin rush from some other physical activity, going from a rigorous training program to doing absolutely nothing is not the greatest feeling.  I am on edge and not able to think as clearly as I normally can.

If you have any type of disorder that causes fatigue, I cannot emphasize enough how much exercise can help one naturally battle fatigue that stems from the stress of daily living.  Exercise combined with living a balanced lifestyle is just so conducive to feeling healthy, even if you're not a generally healthy person.  I've tried numerous vitamins/supplements, extra sleep, avoiding alcohol and drinking water.  None of this seems to help.

I think it all boils down to one thing:

Living a balanced life - with or without exercise.

HA.  I can talk the talk, but can I walk the walk?  It's been years since I've felt I've had a good handle on life.  Of course, I have gone though a number of drastic life and lifestyle changes - including brain surgery, marriage, weight gain, injury, medication changes, plus working full time in front of a computer screen.  Having a desk job for several years now has been psychologically stressful, but it's a job that is conducive to my well-being as a dystonia sufferer.

Okay, so the first step is identifying some stressors:

1. Work
2. Family 
3. Friends
4. Housework
5. Managing Finances
6. Doctor's appointments

Now, we identify WHY are the above stressing me?

1. Work - who likes work?  It's 8+ hours of a day where I could be doing something fun/relaxing.
2. Family - Having a big family is great, but good lord.  We're being pulled in all sorts of directions.
3. Friends - This is where I just feel guilty.  With the family thing and work, I can't fit in time for friends.
4. Housework - res ipsa loquitor.  (Google it.)
5. Managing Finances - Slacking on this one.  With a shoddy economy, I have very few investments.  Banking/mattress stuffing is safe.  In a couple of weeks, I will be losing a substantial amount of money per paycheck due to the sequester.  Yes, I've been furloughed. 
6. Doctor's appointments - Time and money.  Lately, there hasn't been much good news for me on this end either... so that sort of speaks for itself. Oh yes, and of course, sedative medications.

Finally -- what can I do?

• If you're not fighting a disability, the above won't seem like anything out of the ordinary.  But if you have a neurological disorder, such stressors can seem overwhelming and potentially catastrophic.  I need to organize and prioritize everything above.  What can give?  What's a priority? What am I blowing out of proportion?  I need to answer all of these questions and I need a game plan.  I need a life with balance in it.  It's up to me to figure this all out, and over the course of the next few weeks I will have to do this.  The answers aren't going to be black and white, and it's not going to be easy, but it has to be done.

A Dystonia Awareness Week Thank You Message!

Happy Dystonia Awareness Week 2013 - Nicole Oliver

Lessons learned in the race of life...

It started out during the fall session of Girls On The Run.  I was the new head coach at Mill Middle School in Williamsville, and I couldn't find a committed assistant.  As fate would have it, an awesome woman - a marathon runner named Jenna - called the council.  She was in between jobs and sitting at home with nothing to do.  She wanted to help GOTR out in some way.  I was the lone coach whose assistant had just quit.

Jenna and I clicked pretty quickly.  She became more than an assistant coach, but a good friend.  I became turned on to the idea of marathon training and asked for her help and advice.  I had only run one 5k race that year and wasn't training at all.  I'd put on a lot of weight and just needed a new goal.  Why not a marathon?  I went to my orthopedic surgeon and told him my plans.  He was supportive - even though my knee was likely damaged and arthritic.  During the past 6 months I had a lot of ups and downs, bowed out of family gatherings, I completely let the house go and barely made any decent meals.  I grabbed fast food  many evenings and crashed on the couch after evening workouts.

Though I didn't even make it to the starting line of the Buffalo Marathon, the past 6 months have been quite a journey.  I pushed my body harder than ever.  My legs carried me longer distances than they'd ever traveled and I was changing as a person in the process.  My belly fat melted away without my even realizing it.  I am under 110 lbs again - a healthy 108.  My energy levels and sleep patterns have improved.  I used the meditation time during my long runs to sort out different problems in my life.  I felt good about myself for the first time in a long time.  I certainly tested my husband's patience - his support meant the world to me.

I am sorting out my priorities in life.  I'm identifying my strengths and weaknesses.  I know where I need to make some major improvements.  Life is going to be good... it is good... there's much more to it than running... there's friends, family, and of course my musical abilities that have gone to waste. Though I do want to run and race again, I need to focus on the more important things...

Feeling Defeated

There comes a time when you need to just give up.  The "I'm injured/I'm better" rollercoaster ride finally came to a screeching halt with "I'm VERY injured."  Nearly 6 months of training and hundreds of miles and dollars later, I am facing a tough reality.   I am not going to be able to run the Buffalo Marathon this weekend.  I will be lucky if I can walk up the stairs when I get home.

I don't know exactly what's wrong.  I know I have a bad knee, but the entire outside of my leg is in a painful, massive knot.  I strained something while trying to stretch my illiotibial band last week.  I thought rest and ice would help it.  Not so much.  I can barely bend my knee and bearing any weight on my leg causes extreme pain on the entire side of my upper leg and into my hip.  It's completely in spasm.

My mom did some damage control on Facebook in regards to Dystance4Dystonia.  This morning, The DMRF posted that I was running the marathon this weekend and encouraged people to donate in my honor.  I'd shot the DMRF an e-mail last night about my situation, but apparently it wasn't soon enough.  My mom wrote something on my behalf to express my gratitude as well as my most sincere apologies for getting hurt.  I took on Twitter, and in 140 words or less tried to explain I was injured and very sorry that I wouldn't be running.

Of course the DMRF was understanding but...  

I know it's not entirely my fault, but I feel like an idiot.  I am the type of person who follows through on commitments, and I didn't on this one.  I tried so hard.  I even got that 20 mile run in less than 3 weeks ago.  When my Garmin beeped at 20 miles, it was such an awesome feeling and sense of accomplishment.  I could only imagine how much better completing my first marathon was going to be... and for a cause I believed in... and now...   

I called my orthopedic surgeon's office this morning.  I can get in to see his physician's assistant next Wednesday.  Meanwhile, I am in excruciating pain.  Ibuprofen is not helping at all.  I'm at work, eating lunch and just cannot think straight.

This feels significantly worse than the 6 hours of brain surgery I went through.

"Got Toenails?" and other running ailments...

The Buffalo Marathon is only 3 weeks away and I'm dealing with some nasty ailments.  The most discouraging point in my training so far occurred this past Sunday when I couldn't finish my 20 mile run.  My knee was killing me and I had to walk 3 miles home.  I wanted to cry.   This ailment is nothing new, but it seems to have become worse over the past 2 years.  I can't even seem to get it to "pop" into place anymore.  At my wits end, I decided to stop by Eastern Mountain Sports on my way home from work and buy some KT Tape to use underneath my knee brace while I run.  I bought the new Pro version and I really like it.  It seemed to really help during my 6-miler today, and now I'm just using the tape for general stability as well.  I'm worried about my knee in general, but hoping this will get me through the end of the month.

I know that this isn't uncommon in marathoners, but I'm dealing with losing my toenails and ingrown toenails. I have a black toenail and one toenail that's completely gone.  My big toe on the left has undergone some "bathroom surgery" to remove a huge chunk of nail, but it's healing up decently.  Overall, my feet problems are nasty.  My left foot also has a pretty gross blister...

In any event, I'm still plugging away at my training.  The thought of possibly not being able to run anymore due to this knee thing is killing me.  Nate is worried.  Frankly, I am too.  It's such a huge part of who I am...  I need this...

Endomondo Running Workout: Nicole was out running 6.21 miles in 49m:04s using Endomondo.

Angered by events surrounding the Boston Marathon Tragedy

The United States has been aiding asylum-seeking Chechan refugees (though in small amounts) for a number of years now.  This is the thanks our country gets for educating and giving two young men every opportunity to be successful here.  Sorry, but I think it's time to close the doors to Chechnya and a number of other countries who don't respect our way of life.  To anyone who doesn't believe this was an attack perpetrated by radical Muslim terrorists - wake up!

This act of violence had my eyes welling with tears - not just because it's been the worst terrorist attack on U.S. soil since 9/11, but because I am a runner, I support my fellow runners, and just the fact that this was potentially preventable.  

Tamerlan Tsarnaev was questioned by and under the surveillance of the FBI in 2010. They let him go as they did not believe he was a threat.  A statement was released that the Government simply doesn't have the manpower to keep tabs on everyone seeking asylum in the United States.

I'm sorry, that's not good enough for me!

Federal Employees are being furloughed and/or laid off. The United States Justice Department was the first department to have employees receive furlough notices, reducing manpower and therefore productivity. I have to wonder how many of these were FBI or CIA employees.  So, we reduce the Justice Department's workforce, and use the excuse that they don't have enough employees to look out for all potential threats?  Logic at it's finest.

God, please help our country... 

Boston Marathon Tragedy

My grandmother remembers where she was during the Pearl Harbor attack. My parents knew where they were when we landed on the moon and when Kennedy was assassinated.  Is the world becoming a more dangerous place?

For folks of my generation:

What were you doing when the LA Riots took place?

Where were you when a bomb exploded in a van underneath the World Trade Center in '93?

Where were you when Timothy McVeigh bombed the Alfred P. Murrah Federal Building in Oklahoma City? 

Can you remember where you were when the US came under attack as terrorists flew jets into the twin towers in NYC and the Pentagon, killing thousands?

Last but not least...

Where were you when you learned that two bombs went off at near the finish line of the Boston Marathon, killing 3 and injuring over 170 innocent people?

As a distance runner of over 15 years, I cannot comprehend such a senseless act.  I am hesitant to say this was a terrorist act.  I do not know how it could possibly be politically motivated as the Boston Marathon is simply a wonderful event that allows "Joe Shmoe" who has worked so hard to qualify for this race to compete alongside world-renowned athletes from all over the world.  It is an honor to qualify for Boston, which is why it draws so many spectators from all over the country.  Still, the questions remains... why?  Why the Boston Marathon?

My husband and I were in a cab in Washington, D.C. heading back to our hotel when we heard of the explosions.  I thought I'd misheard the report.  When we got back to our hotel we turned on CNN.  I asked Nate to log into the Checkers AC Facebook page to see if members were providing updates on the status of club members running in Boston.  As the number of injures jumped from "dozens" to 60, to 100, and finally to "over 170 injured"...  I felt nauseated.  Jenna texted me from Buffalo to tell me she felt sick.

As the graphic pictures and personal accounts came in I was overwhelmed with sadness.  I thought of all of the times my family members and friends have waited at finish lines for me.  Not athletes.  Not anyone with any agenda other than to applaud and cheer on runners who crossed the finish line.  In Boston on Monday, these were the people who the attacks were aimed at.

Hamstring injury #2 was suddenly put into perspective.  It hurt, but the emotional pain I felt for all those innocent victims heavily outweighed my ace-bandaged leg.  If I were a marathoner, it could have been one of my family members who was hurt or killed.  I simply cannot comprehend this senseless act...  the pain will last for years to come... road racing will never be the same....

    

It sucks to grow up...

Okay, when one begins to receive personalized coffee orders from Tim Horton's, that could mean a few things.    I did some quick math to determine that I spend about $1,500 per year there!  This is not factoring in Nate's daily stop there.  I've been trying to cut back simply because we can't really afford this, but it's tough.  We live so close that we've literally rolled out of bed and walked there in our pajamas.  It's not the norm for us, but I won't lie.

It's cool, though.  The people who work there are great.  Mostly college kids.  From my point of view, it's still odd to consider these folks "kids."  The one girl joined us on her break this past weekend.  She's a senior English major at Canisius College.  I am sincerely amazed at how much college students who are passionate about their studies know.  It truly blows my mind and I wish I had passion when I was in college.  I was a somewhat lost soul who majored in Legal Studies because it was something interesting to study.  I was completely indifferent to what I was learning and simply working my darndest to get good grades.  Nate struck up a conversation with the aforementioned girl about a book she was reading.  Since Nate minored in English and is still always reading a book or two, he's interested in books that people out there are reading.  They had a lengthy, intelligent conversation.  I sat and smiled.  Apparently the author of the particular book she was reading was going to be giving a talk at Kleinhan's Music Hall.  

The conversation shifted gears, thank God.  Music.  When had we been to Kleinhan's last?  We went and saw Ben Folds Five last October. "Who is that?"  We explained he was popular when we were in high school, but not really, likely because he was competing with musicians like Dave Matthews at the time.  "So he's like Dave Matthews?"  "No... we're actually not really Dave Matthews fans; he's more of an Elton John or Billy Joel contemporary.  He's an extremely talented pianist."  What else did we see?  Mozart's Birthday.  BPO performing the music of Led Zeppelin.  I could handle this without looking like an idiot.      

 In the meantime, I'm going through a premature midlife crisis - unless I die at 60.  I've not accomplished things I feel I should have by now.  That's the way I feel, anyway. To counter the aging process, one will often find my right hand with children's jewelry.  Work, home, whatever the occasion... I'm not growing up.  I didn't party or drink in high school.  I skipped the whole 20-something bar hopping scene.  I still feel that I'm too young to go to bars.  I don't wear make-up.  I think of myself as more of a responsible 13-year-old than someone who's my actual age.  I handle our mortgage and car payments. When people ask how old I am, I tend to forget.  I sometimes blurt out a number that's 3 or 4 years younger than my actual age.  It just happens...

Well, this blog entry turned into something I didn't intend for it to be.  I have Forever Young on in the background which is a complete distraction.  I can't stand reality TV.  But I also cannot believe how dumb the under-30 crowd is on this show!  It's embarrassing!  How did they pick these kids?  People never fail to disappoint me.