It's Over

I did my best.  I keep playing that late afternoon at the gym last week over and over again in my head.  What if I'd had my foot positioned differently?  What if I didn't stretch quite so hard?  Hell, what if  I'd decided I was in a hurry to get home and didn't have time to stretch?

I spoke with the woman in charge of Dystance4Dystonia today, Debbie Durrer.  I explained how I pulled my hamstring and how it felt like it was on fire.  We agreed that it would be best if DMRF pulled my page and turn off donations.

I tried very hard and made it so far.  I felt like I was making a dream come true while supporting a cause close to my heart.  I will not be running the Buffalo Marathon.  I am injured.

I guess all that's left is to say  "thanks" to everyone who believed in me and donated to the Dystonia Medical Research Foundation.  My body will not allow my to run anymore.  I don't know when I'll be able to do so again.  I'm taking care of the injury, but after 3 days off, it hurts a lot.  I can't say with any degree of certainty that I will be running so much as a mile on May 26th.

Injuries happen and that's life... I just wish there was a convenient time to be injured. :-(

Only 8 weeks to go and...

I have an upper hamstring strain.

There is a terribly painful knot under the right side of my butt.  Last week, after a treadmill workout I went to stretch.  I felt kind of an odd sensation in the back of my upper leg as I stretched.  It was kind of painful, but I wrote it off.  Nothing more than a quick "ouch" that I continued to run through over the next few days.  In fact, I didn't really notice any pain.

After my 13 mile run on Sunday, I knew something wasn't right.  Something hurt.  My husband helped me find the source of the pain and it hurt like you wouldn't believe.  I had him massage some Topricin into the back of my leg that evening.  On Monday I decided to do my easy 35 minute stationary bike ride.  The muscle spasm and knot got bigger.

I called my doctor today to see if I could get an appointment to verify my suspicions.  He confirmed my diagnosis over the phone and told me to take Extra Strength Tylenol with two Aleve, twice daily.  He also advised that I do not overstretch, but stretch my hamstring lightly as I recover.  That was all fine and good... but... the running?

I told him I'd been training for a marathon for months... and that it was in 8 weeks.  Holding tears back along with my breath, he told me to take 3 days off from running and to return slowly. Okay, I could handle that...

It was 46 degrees and sunny when I got home from work. I though to myself, "my doctor didn't even examine me", "what if he is wrong?", and "What if I take 3 days off and don't improve?" Oh, and my personal favorite, "You shouldn't ever stretch without at least a nice warm-up."

I am a fool.  You can't tell a runner not to run unless it becomes physically impossible.  I am a foolish runner.  I am a fool who did my entire scheduled 6-mile run.  My husband was disappointed in me... and a little angry after I sheepishly told him, "I was bad..."

This run could have hurt me terribly - am such an idiot!  An idiot who is sitting on an ice pack because my ass hurts!

"I've Got My Philosophy"

Endomondo Running Workout: Nicole was out running 16.02 miles in 2h:17m:09s using Endomondo.

I re-read the Catholic Mass readings for today.  I was actually quite happy with what I got out of church today.  Not just the sermon, but the readings as well.  The Old Testament, New Testament, and Gospel readings had one theme in common: Forgiveness.  But I especially enjoyed the New Testament passage, Phil. 3:8-14.

All too often, Catholics are chastised by priests about not going to confession, not taking things seriously enough, and so obviously not following the catechism of our Church.  Frankly, I've sometimes left Mass feeling worse about myself rather than spiritually nurtured.  That's not always the case, but when it is, I just feel awful about myself.

Christians will tell you we need evil in the world because of the need for free will.  While this may be true, today I learned something even more moving.  We need to have evil, recognize when we've done something wrong, and then pick ourselves up and move forward in life by both learning from our mistakes and not dwelling on the past.  Most importantly, when we commit evil acts, the fact that we turn to Jesus for comfort reminds us of how important He is to us.  It really makes sense.  How can you move forward in a human or spiritual manner if you beat yourself up over your sins for months or even years?  God doesn't want us to beat ourselves up - He wants us to turn to Him for comfort and forgiveness.  In turn, we need to stop whatever that bad thing is we're doing.  We'll inevitably stumble because we're human, and that's okay... but it's just so important that we have God as our rock to help us move closer to him.

Today I ran 16 miles.  Those who know me well understand that I do not run with music for safety reasons.  People often wonder how I can tolerate it or what I can possibly be thinking about to pass the time.  There are all sorts of things I think about during my runs!  Today, I had a few lines from a Ben Folds Five song going through my head to the point where it actually started to irritate me.  The song is Philosophy and the lines were as follows: "I see that there is evil, and I know that there is good, and the in-betweens I never understood."  It became sort of a mantra after 8 miles, and I wondered why it was just stuck there. 

For the last half of my run, I tied the lines from this tune into what I'd learned in Mass today.  There are so many "in-betweens" in life.  There sure the heck is a lot of evil.  There is evil that I have tried to wrap my brain around for years now and just make sense of it all.  There have been things I've done in life that were wrong, and I often look back with both anxiety and disappointment in myself.  I ask myself, "Why did I do that?" or "How could I have been so stupid?"

The thing is, God does not want us to try to figure out all the evil in the world.  Evil will always exist. Good will always exist.  The "in-betweens" - those too.  When we fail to do what God expects of us, acknowledge it, stop the sinful behavior, but don't dwell.  Move forward towards the prize, Jesus Christ.

A Sentimental Gift, Sabres, and St. Patrick's Eve Fun!

I don't know what's been with me lately.  I came home from work on Wednesday and I just felt a void inside of me that couldn't be filled.  "I don't even feel like running today", I told my husband. He insisted that I get to the gym.  So many folks out there have generously contributed to Dystance4Dystonia on my behalf and are depending on me to complete this for the DMRF.  "It's not about you anymore," he reiterated.  I understood this completely and went to change into my running clothes.

"What's with you?  Aren't you even excited about the Sabres game on Saturday?"

"No, not really."

In my mopey little way, I went through the dresser drawers to try to find something suitable to wear to the gym.

I'm generally not a materialistic person, and I am happy keeping things simple in life.  I don't want the bells or whistles on new gadgets and I am not keen about expensive jewelry; you get my drift.  In short, if it's something I don't absolutely need, out of practicality, I will not particularly want it.  When you think about it, a $400 piece of jewelry could be a month's worth of groceries.  But on this particular day, I received a gift that lifted my spirits immediately.

As I was changing into my gym shorts, my husband poked his head into the bedroom door and said, "Would you be more excited if you went to the game wearing this?"  He held up an authentic, vintage, Pat LaFontaine jersey!  I was giddy.  I wanted to be angry but I couldn't be.  LaFontaine has been my favorite hockey player since I was nine years old!  Sure, it probably cost a month's worth of groceries, but I didn't care.  I was suddenly that 9-year-old girl again - the girl who would have graciously accepted this gift and insisted on wearing it to school every day.  In fact, I almost wore it to work the next day... but thought that might be pushing it a little...  While it had a price and was maybe a possession I didn't need, per se, it was a gift from the heart to a little girl who had a favorite hockey player of all time.  It was a gift of sentiment that brought me back to my childhood.

So, yesterday I got dressed up for the Sabres game and St. Patrick's Day Eve - as happy as could be in my new attire!  We sat in our seats until my former assistant coach/friend Jenna sent me a text message asking if we could get together between periods.  Her boyfriend, Kevin, had four tickets for four seats in the 200-level that belong to his law firm.  Two of the tickets weren't being used, so we sat the rest of the game in the firm's seats! Kevin bought us all a beer, and we enjoyed some conversation between periods.  The Sabres lost, but we had a nice time.  We went straight to my parent's house for a pre-St. Patrick's day dinner.  My mom took some pics of me.  I can honestly say I  was as happy as I looked in the picture above!  As silly as it seems, this gift from my husband ended up being more meaningful than I ever thought it could have been. :-)    

Dystonia, DBS, Running and Weight Struggles

Left, September 2008, 3 months pre-DBS.
Right, June 2011 2.5 years post-DBS.

Would you believe those two gorgeous young ladies above are the same person?

Between 2003 and 2008, it was quite clear to anyone who knew me that I had issues maintaining a healthy weight.  I could outrun most women in local 5k races in the early to mid-2000s, but I could also out-eat just about anyone - and not gain an ounce.  To this day, there are many who believe I chose to look the way I did - weighing 90 lbs. soaking wet.   I maintain to this day that this was never the case.  I loved running, and I loved food - but the two had little to no connection with regards to my weight and tiny, fragile stature.  Dystonia was a 24 hour a day workout, and I was wasting away from the nonstop uncontrollable movements.

My late 2008 deep brain stimulation changed my body in many positive ways.  I was in control of my movements again.  I could sleep at night without muscle relaxants and/or alcohol.  Walking bent over at a 45 degree angle or being thrown out of my chair at work became a thing of the past.  I wasn't fighting my muscles anymore.  I was finally free from my 5-year-long "workout."  Two months post-op I found myself having to buy new clothes.  I had gained 10 lbs and was still "expanding."

Now, going on my 5th year of being a "bionic woman", I am fighting to feel comfortable in my own skin (and body) again.  DBS isn't a cure for dystonia.  I knew it wasn't going into the procedure, but the results far surpassed everyone's expectations.  I felt and looked "cured."  I started running again as soon as I was allowed to do so.  By April 2009, 4 months post-op, my left knee started to hurt.  That month, I also got engaged.  I decided to back off the running for a while to work on wedding plans.  I saw an orthopedic surgeon, and a little physical therapy helped my knee, but not enough to get me back to running before I got married.  After things started to settle down, I began to train and race a little bit again, but not without knee pain...

It's 2013 now. At my last doctor's appointment I weighed 113 lbs.  I have been marathon training and keeping my diet high in protein and carbohydrates.  I try to keep away from fast foods, sweets and I really try to eat healthy as time permits.  While I am not overweight, I am certain my weight gain was in some ways a result of having successful DBS.   I also strongly believe my knee problems are in part due to my 20-25 lb. weight gain over the past few years.  I'm sure that running with the extra few lbs. isn't helping matters... but the natural antidepressant effects of running are difficult to give up.  

Being a runner is just such a huge part of how I define myself.  Since I not long ago had to go back on medications like klonopin, I have been tired to the point where there are no words to fully describe the level of fatigue I experience. Part of it is dystonic spasm returning and part of it is drug-related.  The best way I can explain it to people is, "You know that feeling where you're so tired that you feel like you're going to throw up?"  I haven't met anyone yet who understands this.

Still, I am making the best with what I have.  Anti-inflammatory medications, extra sleep, bracing, taping and ice have become part of my daily routine.  Klonopin, baclofen, artane and Botox are ways of life.... as are the two generators in my chest.  I'm confident life will get better... sometimes it's just hard to keep my chin up... literally.

A Surprising Long Run

Endomondo Running Workout: Nicole was out running 15.64 miles in 2h:12m:18s using Endomondo.

I deviated from my training schedule.  Heaven forbid! Despite the fact that Sundays are my "Long Slow Run" days (not Saturdays), today I took full advantage of the beautiful suburban Buffalo, NY weather.  I ran over 15 and a half miles!  The last time I ran (almost) that far was nearly 7 years ago when I got lost.  That summer day in 2006 was one of the worst and most disastrous runs of my life.  I got lost and walked a good portion of that. I worried the heck out of my parents. Dehydrated and sick, I could barely walk when I got back to my parent's house.

Today was nothing like that!

I knew as soon as I stepped out the door this afternoon I wasn't going to do my scheduled six-miler.  Every ounce of my body, mind and soul told me I was going to run far... and so I did.  While my legs do not move as quickly as they used to, and I get cravings for weird food products on my long runs (it was honey, today), it simply doesn't matter.  Running is my true passion.  Running is a means of meditation, prayer, and alone time.  I think about all sorts of things... except for running, and I truly believe that's the way to do it!  I feel healthier and happier than I have in years.  I will never be the competitive runner that I could have been had I not gotten sick; however, I have accepted this and am okay with it.  Today I ran farther than I ever have, and I finished feeling strong.

With each long run that I complete, the more confident I become in knowing I will be able to finish the Marathon this May.

When I walked in the door, my husband looked up at me from the couch and asked how I did.  I let my Garmin speak for itself, excitedly sticking my arm out while saying "look!"  I had run 15.64 miles and I was still standing, dripping sweat. "Wow, I'm proud of you!" he told me.  I wasn't thinking about my accomplishment... I quickly realized I needed food.  I ran right back out the door and up to Tim Horton's.  I needed calories, and quickly.  I gulped down iced coffee with chocolate milk flavoring, and two oatmeal raisin cookies.  I breathed and relaxed before walking back home.

I'm still 11 miles away from being a marathoner, but I'll get there.  I know it.    

Why I Chose to Leave Facebook

Last year for Lent, I decided on Ash Wednesday (literally, that day) to deactivate my Facebook account.  Initially, it was going to be a 40 day challenge to prove to people that I could do it; however, it proved to be something much more than that.  It was a decision that ultimately lead me to stay off of Facebook indefinitely.

During my time away, I became aware of the amount of time I had been spending on this social network.  I spent hours a day logging in and logging out – checking to see who "liked" a status update or a picture.  I looked through "friends" pages, sifting through pictures and seeing what everyone was up to in life.  Heaven forbid someone "defriend" me!  I would obsess in my mind about what I had done wrong to not be worthy of remaining a “Facebook friend.”  I had become jealous of everyone else's life.  Despite the old saying that a picture is worth a thousand words, it's not.  It’s a picture – nothing more, nothing less.

I also realized how I'd tended to become involved in pointless drama and debates.  Whether it was about a news story, a television show, or a political or religious debate, I was spending an unhealthy amount of time trying to prove points to people who didn't even know me.  When I got heated up about a topic, you couldn't pull me away from the computer.  The time and energy wasted in becoming so emotionally involved in arguments that just didn't matter was in a word – stupid.

At first I thought it was just me, but Facebook seemed to be taking over everything!  Whether there was an advertisement in a newspaper or magazine, or a commercial on TV, all sorts of industries seemed to have something to the effect of "check us out on Facebook!"  Seriously?  Is this what our society has become?  Are we completely dependent on this form of social media?  It was truly an eye-opener.

Last but not least, the concept of truly living and having real friends came to fruition.  Were all of my 400-some Facebook friends really "friends?"  Not really.  The people who cared about me and were my true friends managed to keep in touch; for the most part, anyway. In fact, it was kind of nice to receive a few phone calls from people wondering why I had "removed" them from Facebook.  I keep in touch with those people – they are the friends that matter.  They can call or e-mail me anytime.

I'm not saying Facebook is all bad, but for some folks out there, it can be.  I networked with so many people who have dystonia.  I was able to find old friends I hadn’t seen in years.  I had runner friends commend me on my accomplishments.  The whole world became a little smaller.  The problem is, how small is too small? 

The irony of my posting this is that I'm still into social networking and not opposed to it.  Just count me out of Facebook.  And MySpace.  I have Google+, AIM, and Twitter (though I do not have a smartphone).  Heck, I even have Pinterest.  I maintain my LinkedIn account for professional reasons.  Clearly I also maintain this blog.  The difference is I now have balance in my life that I didn’t have when I had Facebook.  I have more time and pay attention to the things that matter most to me in life rather than drama going on in the lives of others.  Staying away from Facebook has made me a healthier, happier person.

My Tenth Anniversary

Today was a simple, ordinary day.  I thought I would write something profound and meaningful.  But today was a day like any other.  It wasn't overly emotional, and it certainly wasn't boring, but March 2nd, ten years later was like any other Saturday.

You see, exactly 10 years ago today - March 2nd, 2003 - I woke up with the strangest cramp in my right foot.  I was just a few months shy of my 20th birthday, a distance runner, an ice cream server, an aspiring police officer and a college sophomore.  I "stood tall" at 5 feet and weighed 112 lbs.  Introverted, serious, and both physically and mentally strong, nothing would stop me from doing the things I wanted to accomplish in life.  Ah, the joys of being young.  But I still wonder... what if I knew what was truly going on that morning back in '03?

My right foot became useless...

The days turned into weeks.  The weeks turned into months. I aced a summer school class.   Clay Aiken won season two of American Idol. My foot itched inside of a cast... then it screamed uncontrollably to get out.  I started to lose weight.  I started having trouble handwriting.  Then standing upright.  Swallowing.  Teary-eyed and scared, I hobbled from doctor to doctor.  I changed primary care physicians.  Specialist to specialist.  What the hell was wrong with me?  

In August 2003, I was inaccurately diagnosed with MS.  I had to leave college for a semester.  I saw my future, my dreams and my ambitions fall to pieces.  Hadn't I put up with enough?  My doctor was wrong.  I had to go back to school per an agreement I had with the University at Buffalo that was based on an inaccurate diagnosis.  I didn't have MS.  I had dystonia and no practical means of treating it at that point.  I couldn't think straight. I flunked a midterm.  UB had been kind of a joke prior to all of this.  I did my work, but it's not like I had to work very hard.  High school had been tougher.  I finished one class that semester, dropping the rest.

Dr. Thomas Guttuso.  He basically saved me.  After losing practically a year of school, he accurately diagnosed me with idiopathic torsion dystonia.  A part of my brain was misfiring by telling my muscles to twist and contract for no apparent reason.  After 13 months of pain and misery, I began taking two medications that worked like a charm.  Baclofen and klonopin.  Then a 3rd drug called Namenda.  I started to receive botox injections.  I had flare ups while under stress, but I went back to school having to work a bit harder.  I finished one semester as a full-time student and did relatively well that semester in 2004.  I went back to work scooping ice cream.  I eventually finished undergrad as a part-time student.  It took me 5 and a half years.  I was ashamed of who I was and what I had become.  How I had handled it.  I had no idea who I was.  At 23 years old I looked like a pre-teen, weighing about 90 lbs.  I drank to ease the physical and emotional pain.  I would have done anything legal to make the vicious contractions stop.   

I landed my first job as a receptionist at a law firm less than a month after my degree was conferred.  I was fired 3 weeks later.  No compassion.  No mercy.  My hand-eye coordination sucked.  I actually don't blame them for letting me go.

My second job was a temp position at UB.  I assisted in planning the College of Arts and Sciences commencement ceremony.  I loved it.  It ended.  

I received a phone call regarding an interview I'd had with a recruiter from the US Federal Government.  I was offered a temporary position helping out a Federal Agency for the summer.  I couldn't have been happier.  Six years later, I'm still there.  I received permanent tenure a year ago.

In between all of that:

• I reconnected with a young man in 2008.  We'd gone to high school together.
• A sports writer named Amy Moritz did an amazing full page article featured in the Buffalo News about me.  Apparently my distance running was pretty good.  I guess I'd never really thought about it.  All the more fascinating was that I had this rare disorder.
• I underwent Deep Brain Stimulation.  The results were miraculous.  I started to wean off of all of my medications and become the "old Nicole" I used to be.
• I got engaged to the aforementioned young man.  
• I bought a condominium in Amherst. 
• I got married.  
• My symptoms returned.  I went back on medications.  I'm on some new drugs.  I don't have much of a brain and have trouble organizing my thoughts.  It's very difficult to concentrate.
• I became a coach with Girls on the Run.  I worked with 5th - 8th grade girls for 3 seasons.  I found a new passion in life - working with kids.  They made me feel young again.  I meticulously planned each lesson with pride.  I had to give it up this season for a new goal - a marathon.
• I decided I would marathon train despite limited time, fatigue, and an arthritic knee with cartilage damage.  I have yet to finish the 26.2 mile race.

This morning I woke up - March 2nd, 2013 - my husband and I went to Tim Horton's.  I had a peanut crunch donut and a medium coffee, cream and sugar.  Though I'd slept well the night before, the klonopin kicked in and I became groggy and irritable very quickly.  I'd learned the President had ordered sequestration cuts.  A man in his mid-30s in Florida was in bed one moment, and sucked into a sinkhole the next; presumed dead.    

I ran for 45 minutes on the treadmill at Fitness 19, completing 5.42 miles.  During my run, I thought about the roller coaster ride of life over the past ten years.  Things I want to hold onto and memories I want to forget.  Goals I still want to achieve.  Tears filled my eyes as I felt stuck in a twisted situation, much like the symptoms of dystonia.  Much of it actually due to dystonia.  I came home and showered.  I was so tired.  Nate and I went to the Sabres game.  I got a burger, fries and a cherry coke. The Sabres won in a shootout.  Nate offered to take me out for dinner after the game, but I was just too tired by the end of the game.  It was just another day in the twisted roller coaster ride of life. 

Life is still good, but it could be better.  I just need a little extra help, a little extra time, and a lot of sleep.  I used to think sleep was overrated...