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.