Speaking Out About Chiari Awareness

I'm having a rough time of it.
I'm not going to lie.
And I'm sick, sick, sick of putting on my game face.
I'm tired of smiling when I don't want to.
I'm tired of saying I feel great when I don't.
And I'm uber tired of people that don't get it.
How did I get this way?
Hmmmmm....
Let me count the ways.

So, I'm working 12 hour shifts at work on a busy, busy, busy unit.
My feet hit the door of the hospital and I don't stop until I walk out 12, 13 or 14 hours later.
No breaks..and maybe, if the planets are aligned and all is right with the world, I get to eat lunch.
That's nursing, folks..nursing with all the glitz and glam.
I'd like to say, "That's why they pay us the big bucks.".. But I'd have to say that with the fake smile I'm tired of  wearing..
All of you nurses get the humor in THAT statement.

It's not that I don't like my job.  I do like it. I like the people I work with and I actually like being busy as hell.
So what's my point?
My point is:  My body doesn't like it.
I get home, where dinner is usually waiting on the table for me..scarf it down..walk to my room, shower, sit on the bed and the next thing I know the alarm is going off and it's time to do it again.
I realize this is regular for every nurse, and I'm not saying I'm being treated unfairly. I knew this would be my life when I took on these 12's.
The problem is, my brain is rebelling.
Sometimes I think I audibly hear it laughing in the back ground, scoffing at my plans.
And sometimes, it's more than I can bare.
Sometimes, I give in..and spend my days off in a dark room, racked with sobs and dismay.
Other times I just file away the symptoms that are thrown at me (blurred vision, hearing loss, headaches, random numbness, tinnitus, etc) and don't focus on them.
Then, the next thing I know, I'm in the shower and my hand goes numb...so I crumple to the shower floor and cry. Then I realize I can't hear the water hitting the floor of the shower, so I cry harder..and I can't find a towel because my vision is blurred, I stifle the sobs and grope blindly for  a towel.  I calm myself down, wash my face and emerge from the bathroom shaky and exhausted.
My sweet husband typically looks at me at these times and says, "you don't feel good do you?"
Nine times out of ten--I look him straight in the eyes and I do what all Chiarians do..
I lie.
"No, I'm fine, I'm just a little tired"
He doesn't buy it, but goes along with it....and I love him for that.

 Am I looking for sympathy?
No Way!
I'm verbalizing what many Chiarians deal with every day.
This is our life..we all choose how we cope (or don't cope).
Our disorder doesn't define us, but it does control and effect us continually.

Last weekend, I was feeling particularly over-stressed and under the weather.
I worked several extra shifts, had lots of school work, and I had not spent even a few minutes on my personal business..PLUS--I've had no time to write..and writing keeps me grounded.
Anyway, Bob surprises me with last-minute tickets to a Ball, which, meant I HAD to go find something to wear. He shopped with me, we found my outfit..and stopped off for lunch at one of our favorite places, B. J.'s Brewhouse.

Bob and I at Freedom Ball 2013 at Downtown 301, Waco, TX

So we are there, feasting on Ahi Tuna (I'm a fish-a-holic) and a few seats down from us a guy sits  down.  I glance at him, like one normally glances at someone they don't know and I had to do a double-take...there on the back of his head, emerging from his cap was a well-healed, yet very prominent ZIPPER.

I mulled over the situation for 10 or 15 minutes..then finally approached him and asked the question:
"Would you mind telling me about your scar?"
He did.
And I was, in a word... Delighted.
Not that he said anything I didn't know.
But here he was, looking like a tough guy, shaved head, cap, watching football..and he spilled his guts to me about his Chiari experience since the mid-80's.
Now permanently disabled by it (because of his frequent vertigo and diminished critical thinking skills)--He said so many things that made me feel, at least for a little while...NORMAL.

Bob and I sat there and talked with him, heard his struggle and co-commiserated with  many points.

He said he was "done" with people that don't get it.
So called "friends" that say things like, "but you look okay" or "you don't seem sick".
He said he "cut them all loose".
Or "friends" that disappeared during his surgeries to only resurface later.
He said, "I'm not bitter about it...I just can't go there, real friends will be there no matter what-and through this, I found out I don't have many".
I told him I had similar experiences and felt very isolated.
I know my friend Katrina feels the same.
It's hard and it's lonely.
And it doesn't stop.

We exchanged phone numbers and have even exchanged a few texts since.  We are hoping to meet for dinner sometime soon and I really need that.
I need someone to walk through this with me..and not someone I want to lie to because I want so badly to feel good for them.
I despise the look on people's faces when I tell them I'm having symptoms again.
I despise it when  people say, "but you had surgery to fix it right?"
I despise it when I have to explain why surgery is not a cure.
But I despise it even more when I'm left to my own devices, when no one asks and when I realize that in reality, no one really cares.

Am I wallowing in self-pity?
Maybe
At the same time, this is Chiari Awareness Month..
Maybe the truth is....I just want others to be aware.
If you are a family member or friend of a Chiarian..give them a platform to talk about how they feel.
If not..and you found this randomly..go find a Chiari friend..you won't have to look far..there are more of us than you think.
And if you happen to be in that population of friends that dropped off the planet when your friend started dealing with this enemy we call Chiari-
-Shame on you!
You have no idea how you may have hurt them by your neglect.

September is Chiari Awareness Month....Forward my blog.....create awareness.....donate to a Chiari association or help a Chiarian with their financial needs...Just do something.
Little things mean a lot.

Thanks to Chris Prevatt for sharing his story with me...and to Katrina Powell for being honest about her isolation since surgery (and to Misty for being her steadfast friend).

And to the handful of people that have emailed, text, or FB'd me because I haven't posted in awhile-Thank you for your concern.  Just know I'm doing all I can to beat Chiari every day. Your support means so much.

Possibilities

Well, sports fans..it's been a heck of a week.
I pulled off another week of  three back to back 12 hr shifts.
I was exhausted, but still decided to pick up an extra 4 hr. shift on Thursday morning.
Which seemed like a great idea until about 3 a.m. Thursday morning.
I felt something, I'm not sure what but something jolted me awake.
In the dimness of my bedroom, I opened my eyes.
Something was very wrong.
Something was not right.
I had no vision from my left eye.
None.
I covered my right eye, nothing.
I covered my left eye..I could see everything.
I closed both eyes, whispered a prayer..and waited.
Slowly, vision returned, by noon, it still looked as though my left eye were seeing through a tinted window.  Dimmed vision, dull pain, mixed with intermittent ice pick headaches.
If you've never had an ice pick headache..it's exactly what it sounds like and it stops you in your tracks. Nothing else in the world matters until the ice pick goes away.
This sent me to bed immediately after lunch, around 1:30 pm.
I managed to rally for dinner with my husband..whom I did my best to hide this from.
I guess we all know that feeling.
You're so damned sick and tired of complaining, whining, being the "sick" person...So you are just embarrassed to even say the words out loud.
Eventually, it all spilled out..but that made it no better.
I spent all day Friday in bed...this was the day I had earmarked for getting my homework done...a total waste.
I finally took enough narcotics to knock it out, and knocked myself out in the process.
I did call the doctor who said the usual.."You should probably go to the emergency room--if it get's worse, please go".
I, of course, ignored this warning.
I have had a month without insurance..and honestly, just didn't want to go.
It's like being a science project to people.
If they've heard of Chiari (which is rare), they pull up a chair and pick your brain...If they haven't, you are in for the time of your life, either being treated like you have a glorified migraine OR like you are having a stroke OR like you are insane.
So, anyway, I woke up yesterday feeling good, conquered a little schoolwork then went to the grocery store with my sweet husband..Of course, like an unwanted friend..Chiari smacks me right there in the cheese section.
Jab! Jab! Jab!  Ice pick headache.. vision loss..blurred vision.
I steady myself against Bob, we finish our shopping and head home.
Every minute task becomes a major chore-putting away the groceries, washing the few dishes that were in the sink..by the time I finish, I have tears on my cheeks.
I go to the shower, climb in and turn it on as hot as possible.
I stand there and wail loudly, hoping my sobs are drowned out by the sounds of the shower.
I'm sick of this.
Sick sick sick!
Why?
Why does it have to be like this?
Why me?
Why?
I'm broken, my tough exterior cracked, the Wonder Woman persona I try to evoke and project shatters to the shower floor.  I sit there in the corner of the shower, like a child..all of the possibilities going through my head.."Maybe my surgery has failed, maybe my arachnoid cyst is back, maybe I am having a stroke, maybe I should go to the hospital, my left foot HAS been numb for over a week-that CAN"T be a good sign, maybe my ex husband was right, I'm damaged, I'm broken, I CAN"T BE FIXED"... I finally pull myself out of the shower, crawl into bed, sobbed some more.
I text my friend Kelly, she's always there to encourage..
I'm pretty sure she was text yelling at me..
Telling me I'm strong and tough and blah blah blah...
She even threw in the "You is smaaart, you is kind..."  You know the line, right?
 I was not hearing it.
I was knee deep in self-loathing, tears falling so fast, my hair was wet and sticky..My head throbbed even worse, but I couldn't stop. This isn't fair, this isn't MY life.. I'M tired of being THIS person!
At some point, I fell asleep, alone in my dark room. No television, no Bob..just me and my freaking constricted cranium.
Bob eventually came to bed. I woke up, but couldn't move. My left hand and fingers were asleep, and no, I wasn't laying on them..they were just numb and tingly..my right fingers were tingling, my left foot was mostly numb, my head throbbed and I just wanted, for a brief moment, to disappear.  To be painless, to not have the weight of the world on my shoulders..to not wonder what surprises await me next or if I'll be able to handle full time work and/or school.
I just wanted to be someone different. Someone whole. Someone worthy of being loved.
Then, God very kindly allowed me to sleep.
This morning, I woke up pain free. Snuggled beside me was my sweet husband, still loving me in spite of it all.  The headache has waxed and waned all day, ice picks have poked me a few times..but all in all it's been a good day. School work completed and I'm preparing for work tomorrow...3 more 12 hour shifts to tackle.
Yes, I still have the possibilities running through my head, tomorrow I will make Dr. appts and take a real look at the problems that could be lurking deep in my skull.
But for now, I'm better..and I keep singing this song I learned as a kid in children's choir,
 "I am a promise..I am a possibility..I am a promise.."
Well, here..I found a clip of it.. And no, I don't know these little kiddos..BUT yes, I cried listening to it..I don't know why God wants me to walk this path..But..I'll buck up and keep walking.

  http://www.youtube.com/watch?v=Qo7Kh5zhdUY

September is Chiari Awareness Month..Talk to people about Chiari.
If you are a Chiarian..Welcome, Friend-You are not alone.