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.