Wednesday, July 30, 2014

"Well, Bless Your Heart" (Uber post)

Last night, I had a lengthy visit to a neurological ophthalmologist, Dr. McHenry in Dallas.
Due to the appointment timing and my eyes being dilated--I had to call on Uber to pick me up and transport me home. (YAY- LOVE UBER!!- Get your own Uber account using my promo code for a FREE  first ride: michelec79 at or use the app store)
Anyway, my Uber driver, Scott, was awesome.  He picked me up within 5 minutes of me ordering a car and whisked me home.  Making small talk, he asked about the doctors office being open so late.  I dropped the brain surgery bomb.  I am fascinated with the different reactions I get from strangers.  Sometimes I get a blank stare. Other times a gasp. Last night, "Oh you poor thing!"
Really?  "You poor thing?"
Now, Scott was a wonderful guy, a great driver and for goodness sakes, he's from Tennessee (so he really knows how to talk .."whiiiiite, briiiight, niiiight, liiiight"- Which honestly is music to my ears--I get a little homesick from time to time (except for the life of me, I can't determine where home really is?).

SO anyway, amid the Dallas traffic and the droning voice of the navigation system, I educated good ol' boy Scott on Chiari Malformation Type 1, Arachnoid Cysts, Ehlers-Danlos Syndrome, Craniotomies, Posterior Fossa Decompressions- the differences in neurologists, neurosurgeons, opticians, ophthalmologists and neurological ophthalmologists.   I daresay- this, Scott's first night driving for Uber...will be his most educational one. AND- possibly his most opinionated one.

See after Scott declared me a "poor thing", he also blessed my heart.   It had to stop there.  I refuse to be victimized or pitied. Now seriously, do I seem like the kind of girl that wants pity?   Granted, I believe a certain amount of respect is due to any person that faces life's challenges head on and continues to daily rally and do it again...but pity is where he was headed..and where he was promptly stopped in his tracks.

Starving, shoeless orphans in Cambodia---they can be pitied.  Chiari Warriors - we are to be revered, applauded and hailed as the victors of our daily battles. Arachnoid cyst/arachnoiditis patients--no pity required.... We just wake up and do it again and again and again.  We know what works for us, we know what doesn't.  We know when to crawl in bed, we know when to push ahead.  Fighters for normality of life...Life is to be lived, not merely survived.

Survival of the fittest?  Not this chick- Living Life Carte Blanche--Why not?   Why the heck not?

Please know--this little pep rally comes on the heels of me being in bed for over a kidding- over a week!  I flew to Orlando over a week ago- then I flew home.  I had multiple plane changes on the long route home and my head couldn't keep up with the altitude changes.  So my ears didn't finally completely clear until about two hours ago.  So that was- 10 days of stasis of fluids in my head--- which led to sore throat, cough, fever, headache, fatigue, eustachian tube dysfunction, laryngitis, and bronchitis. I still feel like I'm swallowing razor blades and I sound horrible.  I've slept more than I've been awake and every cough is like someone hitting me in the head with a hammer.  - However-- I went to work at my RN job two days, attended my grandson's birthday party, strolled the Bishop Arts District of Dallas for a few hours with my mom and managed to make 10-20 calls each day for our home business (left lots of voice mails that may or may not be understood by the recipients).  I don't say this to brag...or to dishonor those that are in worse physical condition than myself.   I say it to really set the scene for what life is like for some of us..and how we keep living normal lives regardless.

Now, I know, Scott-the Uber driver, meant no harm.  I did not chop his legs off and put him in his place.  But- I did kindly and gently lead him down a path to understanding my weird brain thing and I  told him-without telling him- I am no victim.   We all have a choice in how we handle our physical deficits.  My choice is to live well in spite of mine  I hope you will choose the same.

BTW:  If you sign up for Uber, use my code to get a FREE ride: michelec79

Tuesday, July 8, 2014

Thoughts That Appear In the Middle of the Night

In addition to my efforts to raise awareness and education in the medical community, I seek to encourage and empower others. My passion is to offer the needed extra hand of help and a shoulder of encouragement. 
Lately, I have had many sleepless nights. Many moments of praying, "God..How will you use me? How will you use this in my life?  What can You reveal in my life that shows Your hand in all of this?" 
I'm not having a faith crisis.
My faith is steadfast. 
The lens through which I view the world has been altered. 
My questions come from what I now see through this new lens. 
Skewed and distorted images have become frighteningly clear.
I do not like what I see. 

I see men and women raw with the emotion of their illness lashing out at others. 
Bullies have arisen in our small communities of hope. 
Prejudice actually exists due to number of surgeries, presence of syrinx, symptomology, ability to work, decisions about having children, even minor grammatical errors. 
Communities of hope become necrotic at their core. 
Clarity of sight is not a gift. 

Many live in situations with supposed loved ones who daily berate and belittle due to their lack of understanding. 
Intolerable cruelties are spewed forth and the sting of harsh words fall on precious shoulders and stick, never to be scrubbed off. 

Financial ruin lurks at every turn. Every moment filled with the "what-if's" of life. 
Fear of failing health and lack of resources nag at the silent places in souls. 
Taking steps to secure our financial futures is criticized by those who are just like us. 
As if they don't have the same fears. 
Or maybe the problem is that they have given up and are jealous of our ability to rally  and continue to fight and press forward. 

Relationships change. 
Friends disappear.
Families disengage.
We become less lovely to be around. 
We know this is not the game of life.
This IS life.
We do not take it for granted.
We may go into our cave of quiet and dark out of necessity-
and blessed is the friend or relation that  ventures into that cave with us.
The cave need not be massive.
Only a few will enter.

We cry alone in the night. 
We cry out loud at the injustice of it all. 
We cry silently for what has been lost-for what never was- and what will never be again.

How is it that we never saw this clearly before?
For myself, I have a running mental list of people who need their lenses cleaned.
Surely they just do not see clearly.
For if they did, their actions would be more carefully chosen.
Words would contain less venom. 
Shallow, petty complaints would subside. 

Life would be grasped full force. 
Amends would be made. 
Excuses would no longer be offered for bad behavior.
Excuses are but empty boxes
meant to fill in the vacancies left by hurt, failure, dishonesty. 
They are a poor substitute for what is really needed. 


I have two life threatening neurological disorders that affect every moment of my life.
Every moment.
I refuse to go quietly and humbly into  a place of defeat.
I refuse to accept ill-treatment from others. 
I refuse and reject many things these days. 

I boast to stand strong and proud. 
Then in the next instant- I'm alone again crying in the shower or hiding in the bathroom texting the only two people in the world that care enough to live every moment of this with me. 
The only people that can handle the truth.
The ones I don't have to muster up a smile for and say, "I'm fine". 
I realize how clear my lens of life really is. 
And how all of this clarity still offers no real answers - yet urges me forward . 
I realize what a contradiction of emotions I am and I despise myself for it. 
I ache. 
My head aches. 
I reach up to touch it and feel the new deformity there. 
A tear rolls down my cheek. 

Anne Lamott's quote comes to mind, "My heart was broken and my head was just barely inhabitable."

I pick up my laptop in the middle of the night and I write. 
I write for no one in particular, yet for everyone.
I write for myself. 
I write because the blank page makes no judgements, has no expectations and has never let me down.
I write and once again- I am free. 

Monday, July 7, 2014

I am so sad and heartbroken I can't even write about it. I have no words.

Friday, July 4, 2014

Independence Day

As I scroll through my Facebook, I see flags and Thank-you's to our military. 
I see families cooking out and enjoying the day together. 
I see lots of water. 
Tonight, I expect there will be lots of fireworks. 

I'm home today. My husband is working. 
I've spent the day in silence.
A couple of phone calls to update on a sick family member, one brief business call, but mostly--silence. 

I like silence. 
There was a time when I didn't like silence.
Silence meant I was alone, with myself, with that tape that plays in my head. 
The tape was detrimental for the majority of my life. 
Some of it's greatest hits were, "you aren't good enough" "you are worthless" "you are a financial burden" "you don't deserve love" "there is nothing wrong with you-your illness is all in your head" "you are lazy" "you have a head full of useless knowledge'...
The majority of these were placed in my head by my former spouse. 
Words hurt, they maim, they cripple. 
They are not biodegradable.
Words are styrofoam.
They last forever. 

Now, after a few years of healing emotional wounds, learning to love and trust again and being diagnosed with two neurological disorders (and the diagnoses that come with them)--
I've learned to welcome the silence. 
As much as Chiari Malformation and Arachnoid Cysts have impacted my life in negative ways, they have also been very positive. 
I've written a few times about the incredible people I've met as I walk this path. 
But I don't think I've ever written about how the validation has healed part of me that I didn't realize was broken. 

Being chastised for years for the many physical ailments that came my way caused great damage to my self-esteem. 
I knew I was not exaggerating things or making them up.
I knew the doctors were missing something.
I just knew it. 

Validation came when my diagnosis led me to research symptoms. 
That's when I found out I am not lazy, there was something wrong with me all along, I was not a hypochondriac, any of 28 different doctors could have diagnosed me if they had not dismissed me.
The worthless, financial burden, undeserving part...well, I guess that depends on someone else's opinion of me.
Certainly not my opinion of myself. 
I have always known my Father is a King. He said I am fearfully and wonderfully made, so how is it possible for His creation to be worthless?  

So, for me- Validation = Independence. 
I have been set free of the old mindset, of the old tape playing in my head. 
Some days, I hear the volume of the old tape increasing. Usually, this is because a headache has zapped my defenses and I can't wrestle the volume switch back down. 
However, most days are victorious. 
Most days I'm waving the flag of Independence. 
Most days I am overjoyed with my life and my happiness. 
Most days.  

This past week I had the pleasure of hanging out with a sweet young girl. 
I fear she may be in bondage to a bad tape.
I made a new friend-in bondage to a bad husband and my same neurological disorders.
I fear she may not have the strength to withstand both.
I want to set these people  free. 
I want to validate their lives. 
Everyone should live free. 
Everyone should be comfortable with silence. 

Today-on this Independence Day-
Listen to that tape in your head. 
We all have one. 
If it is lying to you..
Declare your Independence. 

You are not defined by your illness.
You are not defined by someone else's opinion of you. 
You are not defined by your financial status, the balance of your medical bills, your dress size, marital status  or your ethnicity. 
Do whatever it takes to validate your existence, 
recognize you are the son/daughter of a King. 
Hold your head high (even if it hurts) and declare today your Independence Day. 

Thursday, July 3, 2014

At FL 330 Without A QRH: My First Flying Adventure After Brain Surgery

You may ask yourself..."Self, What the heck is she talking about? Isn't there enough acronyms in my world without adding another? Already I have the learn NS, NL CM1, EDS, AC, POTS, IIH, CCI...and here we go again! 

Stay with me..I will explain.

Remember, I aspire to be a shining day, I will solo.
I plan to pick my lessons up again as soon as the air begins to chill here in Texas...
Then watch out!

In the meantime, my adventures in aviation are limited to those that require me to fasten my seatbelt and stow my electronics at take off.
However, I feel I take that to the next level. I feel I fly more frequently than most. I've gone from being an occasional flier  to a virtual globetrotter.
I love it and I refuse to be limited by a little pain.

That being said, I thought I would share my first adventure in flying after my second surgery.
Again, as passenger, not pilot.

So, we board the plane.
Already, we are in a state of fatigue.  Due to rain we were bumped and re-routed to another airport.
We were assigned seats in First this time it's 11 p.m. and we've been at the airport since 1 p.m.  Our flight is to take two hours.

I settle in the leather seats of the AirBus A319.  As the other passengers board, a wave of panic hits me.  In all of the packing, prepping and planning for the trip, the fact that this was my first flight since surgery had not crossed my mind.  I grab for my bag of "just in case" meds and pop a Flexeril,  three Valium (6 mg total NOT 15 mg) and four Ibuprofen (800 mg).  I mentally berate myself for not bringing my travel pillow.  Open the blanket and prepare for the worst.
I mean.
I have flown post op before..but NOT with shunts.
My mind is a flurry of "what if's "--"What if they clog? What if they move? Can they move? What if the pain is so severe I can't take it and I can't get out of this plane? What if I have a seizure? What if....?"

You will be glad to know that I think I dodged all of the "What If" scenarios that came to mind.
So what happened?
Something I totally did not expect. Something I did not find in the QRH, something no one warned me about...but given the fact that I'm very verbal with my physicians that I fly frequently, perhaps they could've mentioned and avoided a panic.
First, my ears got stuffy...normal occurrence when flying.
Swallowing didn't correct I just went with it.
My head began to ache..not terribly.
My muscles spasmed in my neck and shoulders..not a new thing for me. skull caved in.
I mean it sunk in.
Or medically, a large indention appeared at the base of the skull at the site of the craniotomy defect and cranioplasty.
It was freaky.  I felt as if I instantly looked like E.T. with his misshapen head.

See that indention on the back? -Just call me E.T.! 

I kept this too myself..not wanting to be a whiner. 
We landed, found a hotel..I took a real pain pill..we slept. 
Next morning, we are out the door to grab a rental car and make our way to our target destination. 
The headache builds.
And builds.
And builds. 
The spot sinks, and sinks and sinks. 
We finally get to Bob's sister's home. One sister is a nurse. I ask her to check out my creepiness. 
She sort of gasps. 
Yay.  That's reassuring! 
She gets my husband to look to see if it's normal. 
The verdict.."NO!" "Not Normal!" 
Headache is continually building. 
I'm chugging water and start medicating. 
Laying down..while everyone else visits downstairs. (I despise this feeling- like I don't get to be a part of the fun club--and they all whisper about know, "She looks good"-- or "She looks really bad" Or "I'm really worried about her." 
So I call the doctor.  Of course he's in surgery. (I guess that's what neurosurgeons do). 
I am told to hydrate and rest...and of course..go to the ER if I feel it's necessary. 
This furthers the worry in the house. I stay upstairs as long as I can..and finally make my way down to the living.  Whispering subsides but concerned looks remain.  "I'm fine!" I blurt out. "I do this EVERY's new to you..not to us." 
I supposed the agitation in my voice rocked everyone back into their normal state of being and we focused on the task at hand: eating dinner. Sometime during dinner, as I swallow, my ears finally clear..about 15 hours after the flight.
At long last, when the nurse finally calls back - I am able to scribble a note in my own personal QRH, 
"Swelling and depression at surgical site with changes in altitude can be perfectly normal, especially for the first six months after surgery." 

So- the rest of the story is that I flew three more times, so a total of 4 flights in 7 days. Each time I had the swelling and sinking, but no more headache.  
I guess my body got the message I silently sent it as I laid in bed with a headache the first day, 
"You will NOT beat me. I will NOT stay home. I will NOT hide--You do NOT win!"

So yes, I found my self at FLT 330 (on an airplane at 33,000 feet) without a QRH (Quick Reference Handbook)--but I did what most pilots, nurses, moms, dads and Chiari, Arachnoid Cyst and really all neurological patients do. I made the best choice I could at the time, with the resources and information available.  
Life comes with no instruction manual. 
Just live it and roll with the changes.