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