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.

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

 

Oh, Chiari, you shouldn't have.

Dear Chiari,

You shouldn't have.  No, really, you shouldn't have.  You have given me such thoughtful gifts. They are, um...., incredible. Really, they are. They have taught me so much. The intricate details of these presents are truly mind numbing. They continually amaze me. They touch me in ways I didn't even know existed. You have opened my eyes to so many wonders.  My life has been transformed by all the things I have learned from you.  I didn't know it was possible to feel this way.  It makes me realize that you must really think I am special and I appreciate the passion with which you pursue my attention.  I mean, it's really commendable and it really does make me feel unique. I thank you so very much for the focus you have been giving me lately.  But you really shouldn't. You have been so dedicated to me, personally, for so long now.  You must be getting weary of being so attentive to little ol' me.  I'm so ordinary.

By the way, some of your closest pals have been coming around.  I assume you sent them to reassure me, as if I doubted your intentions.  Trust me, it's not necessary to bother them. There is no need to remind me of your devotion.  I am well aware of your feelings for me.  Surely, they would prefer to pursue their own interests.  They shouldn't feel obligated to hang around me all the time.  I appreciate the courtesy they have shown to me.  I really do.   They, obviously, really care about you; they know everything about you.  They are great at picking up right where you left off.   I didn't even have a chance to miss you because their habits are so similar to yours.  It's cute.  No, really it is.  Trust me.  I am sure they will be there for your through thick and thin.   It must be great to have such dedicated friends.  Thank them for me and tell them I'll be fine.

You must really think I am special since I am getting so much of your time.  I'm flattered.  Really, I am.  So look, I know this will be difficult to hear.  It's difficult for me to say and I hate that this will hurt you.  If I were interested in being involved, you would be my first choice.  Really, you would. You are really fascinating. Honestly!  You are captivating, mysterious, and eccentric.  You know, they should write novels about someone like you.  You re so interesting! You'd make a fascinating research subject. You're so perplexing and complex.  You could blaze new trails, create new ideals. Whereas, I'm just an average Joe.  Just a simpleton, looking for a normal, quiet life.  What I am looking for is so boring and mundane. I just need time, for myself.  I need to figure out who I am, without you. I shouldn't be involved, right now, especially with someone as rare as you.  We just wouldn't be any good together. I would just hold you back.  I'm nowhere near as fascinating as you are.  You really would be better off without me.  I am sure it just wouldn't work out; we're just too different.  So you see, its me; its not you. 

Wishing you all the best, sincerely.

Happy birthday to my baby boy

Brendon, Being your Mom has been the most amazing experience. Thanks for teaching me so much about life. I hope that you always find something to laugh at, great people to laugh with and inspiration to keep you moving forward. Happy birthday, kiddo. I love you! 

Possibilities on the Horizon

Boyet is still not yet eligible to apply for work here in America.  In spite of that, he is beginning the process by sending out applications and attending job fairs.  Today, he had a very exciting opportunity.  He attended a job fair for a restaurant located on top of the new Devon Energy tower here in Oklahoma City.  The restaurant is looking to hire staff to prepare for their opening in late October. Now Boyet won’t be eligible to work for approximately 90 days while we wait on his paperwork to be adjusted from that of a visitor on a visa to a permanent resident.  But we felt that it was important for him to attempt to make an impression so that they would retain his resume for future possible job openings.  My darling husband worked his magic.  The executive chef was so impressed that he was prepared to set up meetings with the other executives at Devon in order to begin the hiring process.  However, since Boyet is not yet eligible for employment they were not able to proceed.  The executive chef explained to Boyet that he would have been at the top of his list of prospective employees for hire.  So, he gave Boyet his personal cell phone number and asked Boyet to call when his paperwork has been completed.  We are very anxiously awaiting Boyet’s status to be adjusted so that he can proceed with employment at the top of the Devon Energy Tower. The restaurant is currently being eagerly awaited as Oklahoma City’s premiere dining experience boasting breathtaking views of the city.  We feel very blessed for Boyet to have such an exciting opportunity waiting for him. Until then, we will continue to say our prayers.