Thursday, September 6, 2012

How are you?

"How are you?"  It's a question I ask dozens of times a day when I am at work.  But I don't really expect an honest answer.  I don't really have time to listen to everyone's answer.  People don't really want to explain to me what they are really feeling.  Likewise, when people ask me that same question I realize that they don't want a truthful answer.  They want a quick, polite answer.  Truthfully, I don't want them to know what I deal with.

But today I am going to give you the truth.  These truths may seem ugly, these words may seem harsh, these thoughts may seem negative.  Honestly, they exist and every day I battle these things.  Most days people never know how intense the battle is or even that it exist at all.  But in my world, it does exist and it's difficult.  I just refuse to allow it to overtake what I have worked so hard to build for myself.  Please don't judge me based on this post. This is not who I am or what I truly believe but these are the demons that I face on a daily basis. I'd like to think that I am pretty good at keeping them at bay and that the love I have for myself and others can overcome them.  I believe that my life is so much more than this and so much richer than just my battle with the demons of Arnold Chiari Malformation.

"How am I?"

• I have a headache.  This isn't your average "Not tonight, honey, I have a headache" kind of headache.  It hurts to blink and we don't even want to talk about turning my head.   There might be a mad dash to the toilet to vomit, so don't be offended if I suddenly run off.  The light is launching darts of pain into my brain and noise bounces around my skull like a racquetball.  I'm fine and thanks for asking.

• I am dizzy.  My balance system has been completely trashed and sometimes it feels like I'm falling even when I know I'm completely still.  My adorable new wedges have suddenly become my sworn enemy. It, also, tends to make me nauseous.  So suddenly, our expensive dinner reservations seem absurd and pretentious.  I'm fine and I'm looking forward to dinner.

• I am overly emotional for no apparent reason.  Of course, my new parking neighbor has left six inches between my car and his huge SUV. I will admit that I thought about slashing his tires or at the very least telling him why his custom vanity plate (Single 4 Life) is correct in predicting the fact that no one would ever want to be with such an #!@%&$*.  Luckily for Mr. Single, I don't carry a knife.  I'm fine and I can manage.

• I experience sensory overload.  The fantastic new CD you've waited for weeks to download sounds like a someone has released a cat in heat into my head through my ears.  The laser light show at this sold out concert seems like a twisted torture device slicing my brains to microscopic bits. This 'raw' style cinematography of the latest and greatest movie feels like fingers are poking through my eyes and swirling my brain inside my skull.  I'm fine and its really awesome.    

• I experience panic attacks while the rest of the world sleeps.  Just as my brain is drifting all to lullaby land, a  bolt of terror seizes my body.  It's as if I am terrified that I die at any moment, but I am equally terrified that I will continue to live.  I need to get out of my own body, but I usually just end up in a freezing cold shower or wandering outside in the dark. I'm fine and I can wait for the sun to come up.

I could continue this list for days.  All of us that suffer from Chiari realize that the symptoms are endless and the ways in which they effect are too numerous to mention.  Usually, I try to stay positive and not let all of these thing bombard me.  Sometimes, I feel like I put on a show to convince people how well I am doing.

Today, I am telling the truth.  The thoughts above haunt me.  I refuse to let them win.

Saturday, September 1, 2012

Chiari Awareness Month

September has been proclaimed as Chiari Awareness month in a few states now.  Sadly, my state is not a that has not made that proclamation.  However, I am not going to allow that to stop me from doing what I can to spread awareness for my condition.


20 Things about my Chiari
1. Diagnosed when? August '05 at age 36

2. Decompressed, if so when? November '05

3. Other additional conditions, if so which ones? Dysequalibrium, Degenerative Disk Disease, Diastolic Dysfunction (that's a LOT of Ds), Depression, Gloves and Stockings syndrome and Chronic Migraines

4. Have you personally met someone else with Chiari? Not yet.

5. Most challenging symptom(s)? Pain, of course!
6. Most embarrassing Chiari moment? I get clumsy and drop things easily. I once made a beautiful banana split at a friends house and then dropped the entire thing breaking her dish. :(

7. Biggest Chiari frustratsions(s)? Having to explain to a doctor what Chiari is.

8. Number of medications in your personal medicine cabinet? 19 including OTCs

9. Number of Doctors/Therapists stored in your phone? 6

10. Do you attend Dr appointments solo or with support? With my new hubby who is great at supporting me.

11. Biggest regret that Chiari has created? Missing once in a lifetime events due to symptoms.

12. Biggest lesson that Chiari has taught? That every moment that I feel okay is a gift, don't abuse it or let it slip away.

13. Favorite non-medicinal therapy? Yoga. Oh and music.

14. Worst medicinal side effect? Having the taste of all of my favorite foods changed.

15. Biggest change in your life since diagnosis? I had to quit my beloved job as a travel agent.

16. Worst medical test? It's a toss up between an electromyogram and the nerve conduction velocity.

17. Hardest thing to give up because of Chiari? Rollercoasters!!!

18. Have you become more or less religious since diagnosis? I have found more ways to become centered which has increased my belief that God is everywhere and not just in church.

19. Where do you find enjoyment now, that you didn't before? Now, I enjoy more down time, reading, talking with friends/family, etc.

20. Favorite Chiari websites? Chiari Carnival