Hey Y'all

Every parent has spoken these time honored words to live by, “If you don’t have anything nice to say, then don’t say anything at all”.  That’s pretty much why I haven’t updated the blog in almost 10 months.  The pain, the exhaustion, the non-answers, and a bad case of writers block got the best of me and anything I tried to write was so negative or felt so impossible to describe that I gave up trying to write anything.

A whole lot has happened since the last post, so let’s get all caught up… As I mentioned in the previous post, the neurologist put me on the diuretic Acetazolamide which made food taste weird and did nothing but make me pee A LOT!!!!  Although looking back at it I guess I got quite a bit of exercise because of the drug, my office was in the very back corner of our building and the bathroom was in the front.  I’d make that walk about every half hour, sometimes it seemed like the building was a mile long, especially when you’re doing the “I gotta pee” walk.  Up next was the Spinal Tap (not the most pleasant experience) which showed that my pressure was normal.  They also tested the spinal fluid for every aliment imaginable and I got a clean bill of health…woohoo!  For a normal person this would be great news, but when you are hoping against hope for a solution and just want the pain to go away finding out everything else is normal just kind of pisses you off.  This is when Chiari started to get the best of me, the bully was kicking my butt and it seemed there was no way to stop it.  I was losing the fight and becoming increasingly angry about the cards I had been dealt.  Every single time I tried to write something I would end up staring at a blank page and could feel my temper begin to seethe. 

This song captures the conversations I’ve had with myself and my dear friend Chiari.  If I looked at my iTunes song list I’m pretty sure I’d find that it’s got more plays than any other song. Go ahead and click the link...Slipknot - Duality

Then I had a follow-up appointment with my neurologist and things got interesting.  He had one more trick in his doctor’s tool kit that he wanted to try…Botox! Yes that wrinkle smoothing Botox!  He was having great success with his patients that suffer from chronic migraine and wanted to try it on me.  At this point I was willing to try anything so I agreed to give it a try, even after he explained that each treatment involved 31 injections in various parts of the head and neck, administered every 12 weeks.  He warned me that the first round might not do anything and that it can take 2 or 3 rounds before I would see any results.  He certainly knew what he was talking about, the first round did nothing.  Even though he warned me that it might not work I still felt let down and discouraged.  After what seemed like forever the appointment for the second round of treatment finally came around.  Within 2 days I was feeling different, you could even say better.  I still had a headaches 24/7 but they were becoming less severe and I had greatly decreased the amount of pain killers I was taking.  Within 2 weeks the pain was becoming manageable enough that I only needed an occasional Advil.  Even the numbness and tingling in my left side had decreased.  Things were looking up!

So why didn’t I start writing again? Well you see, around this time my wife and I made a major life changing decision…it was time to sell the house in New York and move south.  We had just had one of the worst winters we could remember and had no desire to deal with another one.  Heat may not be the best for us Chiarians but the cold is so much worse for me.  Plus it was a great move for my wife’s career.  We got so busy getting our house ready to sell and looking for a new home in South Carolina that there wasn’t any time to think about writing, much less taking the time to sit down and try to write.

Let’s fast-forward our journey to today… we have settled into the new house and have been enjoying the beautiful upstate area of South Carolina.  I am in the process of finding new doctors so I get to explain the wonderful world of Chiari to them, which means I’ll have more stories to share.  Unfortunately I took too much time in between the big move and finding doctors so the effects of the Botox have completely worn off and I’m right back where I started.  Even though the headaches are some of the worst I’ve had in years there really is light at the end of the tunnel so the anger and frustration is being kept at bay.  I have found another neurologist that offers Botox for pain management so as soon as I get the referral process completed I hope to be back on track.  And now that I feel like writing again I will keep the blog updated on a regular basis.  Besides, now that I’ve had time to reflect on the past 10 months I’ve realized that there are a bunch of stories to be told from the time between these two posts.