Tuesday, September 24, 2013

Warning - Rant Ahead

I should move to Hollywood and become an actor, because I know that I would end up winning an Oscar or an Emmy.  How do I know this? It’s simple…thanks to Chiari I have become great at deceiving people, or just flat out lying.  Now don’t go condemning me to hell just yet or think that I’m a horrible person, let me explain.  There is one question that I have come to dread, it is the most benign query that someone could make…”How are you?”  I know you don’t want the real answer to that question so I will smile, look you straight in the eye and lie to you, my answer will range from good to great.  Come on, lets be realistic about that question, you don’t want to hear that my head is killing me, that I still get numbness and tingling in my arm, that the tinnitus is driving me crazy, that I still get dizzy spells, that I still have trouble finding the right word, that I still can’t seem to regulate my voice.  I had surgery so I’m supposed to be better, and you were just asking a question that we all ask without thinking, so I’m not going to tell you the truth.  Besides, even with all of the issues I still have I feel so much better than I did pre-surgery that I have days when I really do “feel good”. 

Another reason to lie when people ask me how I’m doing is that it saves me from biting my tounge and helps to keep my temper in check when I get this wonderful response… “well it could be worse”.  Yeah, no shit it could be worse.  Don’t you think I know that?  I know that I could have some other terrible disease or be dying or be totally disabled.  I know that, but thanks for totally dismissing me and making me feel like an ass for telling the truth about how I feel.  I’d rather have you tell me how you really feel and just tell me to shut up. So as you can see, lying just makes day-to-day interaction easier.  If I could find a way for other people to live just one week - hell just one day - with Chiari, then maybe they would be more understanding and not make me want to punch them when they say “well it could be worse”.  This is the problem with Chiari.  People expect you to be 100% because you had surgery and you “don’t look sick”.  Unfortunately decompression surgery isn’t a cure; it’s performed in the hope of alleviating some of the symptoms.  Some of these symptoms might go away with time others may not and new ones might emerge, everyday is a surprise when you have Chiari.

I have perfected smiling through the pain or putting on my “game face” as Michelle over at Constricted Cranium calls it.  I don’t listen to my body; it’s more like I completely ignore it.  On days I feel like crap and should be lying down in a dark room I ignore the pain and push on doing things because it is expected of me.  Not only by others but I also expect to be able to do everything I used to do, so I will push myself far past what my body is telling me I should do.  Is it smart to ignore my body on the bad days, no it’s not and I often suffer the consequences for it but I don’t want people looking at me or treating me like the sick guy, and I don’t want to be perceived as weak.  It may sound dumb but sometimes what gets me through the rough periods and helps me keep my game face on is a quote from the penguins on Madagascar “smile and wave boys, smile and wave”.

I’m not having a pity party and I’m not trying to get sympathy with this rant.  It’s just sometimes I need to vent and this blog is the only way to vent without hearing “well it could be worse”.  So do me a favor when you see me out and about, don’t ask me how I am, instead just say “what’s up?”

Friday, September 13, 2013

Been A While

Wow it sure has been a long time since my last post! What can I say it’s been a very busy summer. Its been so long since my last post that my brother-in-law Harry finally sent me a Facebook message informing me that I needed to post something because he is sick and tired of people asking him how I’m doing. A brief note about my brother-in-law Harry; not only is he a very handsome man, he’s also a talented comedian and he has the ability to install a perfectly working storm door. Oh and he’s also an engineer, but I try not to hold that against him. I would give you a link to his website highlighting his comedic stylings but he’s too busy playing video games until all hours of the morning to create and maintain one.

Let’s move on to what really matters here…me. Like I said it’s been a very busy summer filled with work, camping trips, Little League, and lawn mowing. Work and lawn mowing may be my least favorite things from this summer but I thank God everyday that I get to do them. In my last real post I talked about how my patch is leaking and what could be done to fix it. I’m happy to inform you all that the leak seems to have resolved itself or at least slowed down to a trickle. I get occasional swelling but nothing like before. It’s been seven months since I had my surgery and I’m finally feeling better. Sure I have pain everyday, but it’s nothing compared to the pre-surgical pain and it has been a joy not having my head explode every time I bend over or sneeze. The biggest culprit now is yawning. Holy crap it’s amazing how much pain a yawn can cause. A good yawn causes my head to feel like its going to explode then immediately implode, it also causes a brief shot of dizziness and sends pain shooting down my back and into my legs. Luckily even the intense pain caused by yawning goes away quickly. So overall I can’t complain about how my remodeled brain and skull are feeling these days. My answer to the question “would you go through the surgery again” is a resounding YES!

The most bizarre thing that has occurred since my surgery is pain in my legs, which I’ve mentioned before. It’s located just below my butt cheeks and makes sitting and standing painful. I mention this because it’s the one thing that has kept me from being released from the care of my neurosurgeon. I had an appointment with him last week and for the first time ever I wasn’t kept waiting, how refreshing. Anyway, he can’t determine what the problem is so now I’m heading for another MRI, this time of my pelvic area. Did I ever mention how much I hate that damn MRI machine? Oh I did didn't I. This time there will be no head cage so I should be able to get through it without freaking out. If I’m real lucky they will stick me in feet first and my head will never enter the tube.

That’s it for now. Remember, September is Chiari Awareness Month so spread the word.