Saturday, July 1, 2017

Deja Vu...It can happen to you (Um, I mean...Me!)

News Flash:  I am an addict.

There, I said it.  I need a twelve step program for addicts.

I am addicted to  Totally addicted.

I can't put two sentences on paper without using it as a reference.  I get "Word of the Day" email alerts and I thrive on acing every quiz on the website.  Maybe that makes me more of a nerd than an addict.  Either way, it's a problem I am aware of and I plan, one day, to seek help.

But, not today.

Today I referenced, deja vu.   I needed to be certain of using the term appropriately.  Here is what has to say about this term:


Psychology. the illusion of having previously experienced something actually being encountered for the first time. 
disagreeable familiarity or sameness: 

My focus is on the second definition.  Because, this is where I live right now, in a state of disagreeable familiarity about what is going on inside my skull.   I'm not happy about it.  Not one bit, but it's time to face the music. 

It's happening again.  All of it. 

Around January or February, sporadic headaches began to come in more frequency, dizziness, pressure...not continual, just subtle reminders that yes, I have a less than normal situation existing within my skull.   Slowly, these issues have increased, or perhaps morphed is a better word..into almost constant neurological issues. Pressure headaches wax and wane, but feel I have on a tight headband at all times, in varying degrees of tightness.  Vision problems hit me hard about two months ago, and now added to that is a constant high pitched hum that drowns out everything except the constant dialogue I have going on inside my head. 

The dialogue has been going something like this, "Am I dreaming this? Is it really happening? Should  I go to the doctor?  Do I need a doctor?  I don't have a doctor. This will go away in a few minutes. I have to go to work. Does anyone care?  Do I care? Should I tell someone? Who should I tell? Does anyone really care?  Will my family be annoyed? What the heck is going on here?"

Over the course of the past several weeks, I have been in touch with my neurosurgeon's office and will be going back to Houston July 10-11 for a new set of scans and a face to face with the man himself, Dr. Dong Kim.   Dr. Kim is a world-class neurosurgeon.  He does not claim to be a "Chiari Specialist", but he is a brain tumor rock star.  By definition, arachnoid cysts are considered to be a form of brain tumor.   Since I have a custom cranial combo of Chiari and Arachnoid Cyst...Dr. K is the guy for me to see first.  He performed my Chiari Decompression and Arachnoid Cyst Fenestration in 2013, then my Cranioplasty and Intracranial shunting in 2014.  He told me then that if we got to 5 years post op we were likely home free.   Now, I am three years post op and feel like I've done really well.  No complaints from me.  I've traveled all over the world.  I work a rigorous full time job. I have a full, beautiful life that would not have been as full without the last two surgeries. 

So now, here we go again.. 

I hesitated to post on my blog about this...or anywhere.  For two reasons: 1. In recent years, I've dropped out of Facebook Chiari Support groups due to so many bullies in those groups (which is really the saddest thing I've ever seen)  and in recent years, I've dropped out of the lives of many people.  

Not too long after my second surgery in 2014, tragedy hit my family.  At the time, I was busy coaching others with Chiari, helping them rebuild their lives.  I was very involved in support groups in Dallas and I felt great about being the advocate I had become for others.  Yet, when tragedy hit home (which I won't go into, but if you know me personally...then you know),  I did not get support in return.  I got lashed out at, dropped, deleted, snapped at, even slandered.  So, I just retreated from it all. 

A few months ago, when symptoms started returning, I stuck my head into a few groups and honestly, am appalled at the bullying that still goes on.  I have found only a few places that feel supportive and I am truly deeply saddened that some people have turned their own physical pain into a weapon to use against others.   Really, people that live with neurological challenges need each other.  We need the understanding of other people that have been right where we are, face the same challenges, have the same thoughts and fears. 

So, here I am.  I'm putting my thoughts and words out into the world again on this blog.  I realize there is purpose in all of this.  Writing about my experience may only help one person, but one person is enough.   

In the past, I've held back a little on this blog.  I didn't realize it until I re-read some old blog entries.  Those days are over.  Expect the writing to  be more raw,  real,  even visceral.  Remember, if you don't like what I have to say, you have the write to not read.  Exercise your rights.  I'm all for you. 

So, here is an excerpt of my personal journal entry from yesterday: 

My ears ring so loudly I can barely hear over the deafening hum. 
When I stand too quickly (which is normal pace for the rest of the world) I can hear almost nothing for 5-10 seconds.  The pressure in my head is so strong and forceful on standing that I have to stop in my tracks.  There is no choice.  I have to stop. I can't even speak at these times, only pause, wait then slowly, press on.
I’m back where I was 4 years ago. I feel like I am constantly wearing a very tight headband. 
Very tight. 
Pain…ever constant in my head, neck, shoulders.  Dull pain, or sharp pain.  Some pain- 98% of the time. 
I’m mad about it. 
I don’t know how to not be mad about it.  Or frustrated. Or sad.  I am all of these things. 
The thought, the mere thought of another brain surgery makes my insides wince.  I don’t know if that will be the answer, but if so, I don’t know how I will get through it a third time.  I also don’t know what I will do if Dr. K says there is nothing to do about it, just live with it.  I know nothing at this point.  In 10 days I will be in Houston looking at scans with him.  He will be hugging me and kissing my cheek like every time I’ve seen him before.  
Whatever the outcome, I will rally and face it boldly.  My face may be tear streaked, but my chin will be held high and I will not give in to pain or fear.  
I’ve changed over the past three years.  I’m stronger now. Stronger for myself. Stronger because I had to be.  I realize the only person that can advocate for me is me.  
So, I’ve got a lot of work to do. 

Deja Vu...A disagreeable familiarity or sameness.   The word totally fits. 

My Constricted Cranium...the Saga Continues. 

Tuesday, February 21, 2017

Sometimes I forget I have Chiari...and how remembering brings me JOY!

Sometimes I forget I have Chiari.
How is that possible?
Living with a disorder so relevant to my daily activities, it seems its presence would smack me in the face all day, every day.
Yet, it doesn't.
Many days, Chiari, or my brain, or brain surgery never comes to mind (no pun intended).
Then, other days, I am overwhelmingly aware of its presence, of my uniquely shaped skull and those things that once screamed out at me as limitations.

Today has been one of those days.  Having the flu, with coughing, body aches and chills really is not so fun.  Not fun at all.  As I reached my aching arms out from under my bedspread this morning, willing myself out of bed--it hit me. Hard.  Vertigo.  I fell back on the bed and braced myself until it subsided,  just head congestion, I thought. Eventually, I fell back to sleep.  Hours later, I shivered myself awake.  Freezing, I attempted to roll over and snuggle up to my husband when it hit me again. Debilitating vertigo.  Spinning, can't-move-so-hold-on-until-its-gone vertigo.

Then I remembered.  Last time I had the spinning dizziness this bad,  I was diagnosed with Chiari. Now almost five years later, again- the room kept spinning.  I allowed my body to go limp as I laid in my husband's arms and sobbed. The nurse in me knows this is likely brought on by the flu virus my body is busy fighting.  Rationally, I know the odds of this being some problem that could require another surgery are super slim.  Yet, just for a few minutes, I allowed myself to become a victim again.

My mind raced back over the past few years of diagnosis, the search for treatment, surgery, recovery, pain, losses, wins, physical therapy, massage, work, writing, loving, losing, supporting, giving up, giving in, letting it be, hating Chiari, hating my body, loving my body, the people I've met through this, the people I've lost through this, financial loss, financial gain, travel, headaches, MRIs, choking, walking, fatigue, energy work, body work, inner work....then I slept.

Upon waking, the tears had dried on my face making my eyes feel tight, my damp shirt clung to my body as I slowly and purposefully turned over, sat, then stood. On shaky legs, I steadied myself against the wall, crept slowly to the door and down the stairs.  The room never started to spin, I did not get dizzy. I did not fall down.

I did, however, drink a glass of water, make my way to the sofa, snuggle under a blanket, watch the sunrise and shed precious tears of gratitude.  Appreciation flooded my body as I realized, nothing has changed. I am still beating the odds.  My body is up to the task of living, loving, thriving (not merely surviving).

As my tears once again dried up,  I realized that I had forgotten for a brief time that I had Chiari. Like the way one forgets for awhile they they were abused, raped, abandoned or betrayed, stumbling intrepidly forward in life, with each feeble step putting distance between what was and what currently is.

Often, I am asked (sometimes angrily)  why I delve into the past, examine my life, dissect minute details and question, question, question everything.  "Can't you just be happy to have survived? Can't you just move on? Be grateful? Don't you realize that other people have things so much worse?  Well, you should just count your blessings." 

Don't get me wrong, I am not opposed to counting blessings. I do not write these thoughts in a manner of comparison or competition with the wins and woes of others.  I write, I ask and I examine because it feeds my soul.

Examining the why of it all, the wonder of it all, the pain of it all catalyzes the meaning of it all. Understanding leads to acceptance.  Acceptance soothes the barbs of sadness. Soothing evokes easy movement. Movement leads to increased energy flow. Increased energy flow ignites endorphins and soon there is an eruption of joy.

Having the flu reminded me I have Chiari and that my neurological system is delicate. Understanding that because of this, the flu and its remedies (like Tamiflu) affect me differently.  Accepting this helps me give into the process of healing, even the moments of sobbing defeat.  Soothing and being gentle with myself makes moving through the process easier.  As the movements occur, my energy is increased, I feel better and more invigorated...and I use that energy to spill my thoughts onto this page.  Writing brings me great joy.

So, yes!  Sometimes I forget  I have a Chiari Malformation... and remembering that I forgot brings me great joy.