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.
