Dr. Kim Visit Results

One of my favorite Grey's Anatomy quotes on an episode that briefly mentions Chiari Malformation: 

  

Now, I'm not saying that I'm not going to get better. I'm not giving up hope or throwing in the towel. 

Anyone that truly knows me can attest to the FACT that I am a research hound. 

When it comes to medical information, I have to be fully informed. I have to be prepared for every doctor's visit, every medication, every procedure. No matter how outlandish it may seem, if I find it on a list of symptoms that even remotely relates to something I, or anyone I love, experience, I'm going to be in the know. I detest being caught off guard. 

I like to excel under pressure, never be at a loss for words (or questions) and never, under any circumstances do I let a physician catch me off my game. 

Well, never --until this past week. 

I had an appointment with my neurosurgeon.  I fully expected a brief visit, focused on the options for shunt placement.  I had studied shunts, VP, LP, CP-anti-siphoning devices, 

This is what I expected:  A burr hole ( just what it sounds like) in the skull, incisions behind the ear, incision somewhere in the abdomen.

THIS I was prepared for.  I had my questions ready. What about shunt malfunctions? Shunt infections? Clogged shunts? Shunt revisions? 

Outpatient surgery, right? Easy breezy. 

Not that I was happy with this option, but at least I was prepared. 

Dr. Kim had other plans. First, He and I sat together and took measurements of my arachnoid cyst. Not only has it refilled, but it is actually larger than it was before surgery last year. The pressure from it is pushing my cerebellum right back down into the foramen magnum, back into the place it was before. Thank goodness it's not down quite as far as before-and Dr. Kim is really pleased with the way that portion of my brain looks. He said it's..in a word, "beautiful". (Leave it to a neurosurgeon to make a brain sound attractive.) He discussed all of the above shunt concerns and stated that he would like to avoid those complications and risks. Instead, he wants to do a different surgery, much like the one I had last year.  

He will go in through the old scar (zipper) in the back of my head and put little tubes in the cyst (like little drains) that will re-direct it into the normal cerebrospinal fluid (CSF) pathway.

This should keep the cyst drained, relieving the pressure on my cerebellum. 

While in there, he will also do a cranioplasty.  This will consist of a mesh plate being put in the little part of my skull that he cut out last time. My cerebellum is kind of slumping into that spot. 

As I'm sitting there, alone, trying to not look alarmed or dismayed, or even slightly thrown by this unexpected turn of events, he says, "Oh and you will need and ECHO (echocardiogram), because I have to go in pretty deep and will need you in the sitting position this time." 

Now, why that is so unsettling, I don't know. 

I left that appointment and drove straight back to the airport. I hopped on a plane and went to visit an old friend. This was pre-planned, as I knew I would want to get a firmer grip on things emotionally before seeing Bob, and besides, as long as I wasn't home, this wasn't real. 

My plan worked out beautifully (not to be confused with the beauty of my post-decompression cerebellum). I greatly needed the time away, just to laugh and joke around with my friend. However, it did make me a bit sad. I've moved so much over the past few years, I have literally NO close friends nearby. Trust me, at times like this-a girl wants her friends. (and her children and her mommy). Wonder what it's like for people who live in the same place with the same friends for their entire lives?  Do they see the treasure that is right before them? 

Surgery will come quickly-it will be the day after my birthday, two days after Bob's birthday, four days after our first anniversary and three days before Easter. (Do you remember enough of elementary math to figure that out?) 

So, for now, we are making plans. We have to decide what to do with our pets for a week or so, decide where to stay in Houston, what to do about Easter, coordinate travel plans with my mom, arrange our loft in a user friendly way, finish our taxes and so on. 

Honestly, I'm still in shock a little. It just doesn't seem real to me that this could be happening again. A little bit of surgery wasn't so hard to conceive of. I just didn't expect this.  

I thought the arachnoid cyst was the least of my concerns, my focus has been on Chiari..so much that I have barely skimmed the surface of the available arachnoid cyst resources.

Times like this I do miss close friends and family,  I long for a home church, and I wonder why we live so far away from everyone we love. 

One thing I know for sure: Whining never got me anywhere.   I know that over the next week or so, things will fall into place.  As soon as plans are in order, I will feel more confident  and will be ready for whatever comes my way.   Having a set agenda, a checklist, a schedule of events is comforting to me.  As a matter of fact, I just scratched off one item: Write a new blog post.---CHECK!

Below are pictures of the last few weeks..and  links to info on arachnoid cysts, Chiari, surgical positioning and my CaringBridge site. 

Thank you for reading and for caring. --M

Links:

Positioning: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265668/

Arachnoid Cysts: 

Webinar by my neurosurgeon: https://memorialhermann.adobeconnect.com/_a976765836/p6tcaue0xgc/?launcher=false&fcsContent=true&pbMode=normal  (this is lengthy, but if you scroll to about 17 minutes in the arachnoid cyst portion starts)

Basics:   http://www.columbianeurosurgery.org/conditions/arachnoid-cysts/

Fenestration:  http://arachnoidcystawareness.com/tag/fenestration/

Chiari: 

http://www.conquerchiari.org
 http://www.chiariassociation.org
CaringBridge:
 http://www.caringbridge.org/visit/michelerobinson

Bob and I in London, March 2014

Katrina and I earlier week in Houston. We finally met face-to-face!

Rosalyn and I catching up in Louisiana earlier this week. We've been friends since high school

A Little Lesson In MRI's

I wish I had some great take on a blog post right now.
You know, some comical slant to make the story flow a little better.
But really...I just don't.
Not that I'm negative.
I'm just out of ideas.
I got the call from Dr. Kim on Friday that, as I suspected, the cyst is back.
I will fly down to Houston to meet with him 3/25/2014  to discuss options.
Remember, when I had surgery last year, he told me if the cyst came back I would need a shunt.
I expect this to be a CP shunt..cysto-peritoneal.
My best info on this is that a burr hole is drilled in the skull, maybe a few incisions behind the ear, then a tiny tube (shunt) is inserted, then it is fed through the body and into the peritoneal cavity (where all of the gushy organs live). There will be at least one abdominal..or maybe on the side somewhere..incision.
The purpose of this is to allow excess CSF, which fills the cyst, to drain into the peritoneal cavity, keeping the cyst from over filling too much, which pushes my cerebellum downward.
How about a brief anatomy lesson.

Today at the Perot Museum, I snapped this photo of a normal brain:

Normal Brain

Now this isn't a fabulous photo, but should be good enough to show the differences.  Here is my brain before surgery last year:

My brain before surgery last year. 

See how in the normal MRI the re is a dark space at the bottom of the brain..this is cerebrospinal fluid (CSF) that the brain floats around in, it cushions the brain and it flows easily from the spine opening (foramen magnum). Compare it to last year's MRI..see how the cerebellum is wedged into the spinal column-THAT is the Chiari Malformation and there is excess dark space (CSF) on top of the cerebellum..THAT is the cyst area (Arachnoid Cyst). 

You can see how this would cause many problems as many cranial nerves originate in the foramen magnum..there is constantly a pressure build up and many body functions are affected..vision, hearing, balance, numbness, headaches, nausea, swallowing problems..and the list goes on and on.   For the sake of comparison, here is  my MRI from a few weeks ago:

MRI  Feb. 2014

Here you can see that dark space is back, marginally larger than before surgery and the cerebellum is not wedged in there, but is tucked down there pretty good,  putting pressure on all of the same cranial nerves and pushing the brain stem forward.  So now the big question--what to do?  Shunts do allow for alleviation of symptoms, but come along with shunt revisions, clogged shunts, shunt infections..and so on. 

None of my Chiari friends have this type of shunt, they mostly have LP  (lumbar-peritoneal) shunts, a few having VP (Ventricular-Peritoneal) shunts..so I would appreciate any information you may have on CP shunts.

I must be in denial, because I didn't even allow myself to really research shunt placement until I heard back from Dr. Kim. (anyone that truly knows me, knows I'm a research hound, I must be fully informed at all times)
 I knew what he would say, and thought I would be prepared, but I wasn't. 
When I found out I needed Chiari surgery..I felt first validated, then elated to find treatment. I had done the research, knew the options, the methods..the madness..then the reality hit and I hit an emotional wall. 
This time, not at all the same.  Validation and elation haven't shown up..just this sick feeling in my chest that signals uncertainty. My professional life as a nurse, my ability to build a new business that I can work around my lifestyle, the ever-playing tape in my head that says Bob should return me to Wal-Mart (they will take anything back-one time I was in there returning something legitimate  and a lady was in front of me returning half of a loaf of bread..REALLY???)..He really has been so great to me and I know this must be as hugely disappointing to him as it is to me. ----Not to mention that I'm now digging in to research so I can make the best most informed decision when given options. I'm not worried about the pain..I guess it's the idea of having a shunt placed..giving up more of myself, what if Dr. K just wants to wait and watch..what if he wants to proceed immediately, what do I do? what do I not do? -- just the whole ball of wax. 

Thank you so much for your kind emails and posts. If I haven't gotten back with you personally yet-Don't worry, I will..If I haven't returned your calls and/or texts..please call or text again. I can't seem to get it all done. Please don't take it personally.  I need you. You keep me writing, even when I feel I have nothing to say.
 Your prayers, your comments and your encouragement are treasured.

I will update you when I know more. 

And Then It Came Back

"And then....it came back..."

I remember reading this words on someone else's Chiari blog, speaking of her post operative experience.
I thought, "How horrible, to go through that awful surgery, to have the elation of beginning to feel great, then the disappointment of symptoms slowly coming back--that would never happen to me-that must be REALLY RARE."
As I type this, I can hear the voice over from ABC's Wide World of Sports: "THE THRILL OF VICTORY....THE AGONY OF DEFEAT!!".   (I always wanted to research and find out how many broken bones that poor guy had in the commercial.)

I guess what I'm dealing with right now is the "agony of defeat".
The past few weeks have been particularly troublesome.
Headaches, Muscle Spasms, decreased hearing, blurred vision, trouble speaking, trouble swallowing, Dizziness...vertigo...weird numb sensations..numb face, fingers, back, pelvis.. I shouldn't type "pelvis"..that is very risque for a good Baptist girl...but, hey...it' s the truth. (and at least I'm not posting a picture.).  These are all intermittent, yet they can all be present at once, and can all be gone at once, usually it's just the same 4 or 5 things.

I know I shouldn't be.-but I'm a little angry about it.   I have been on this "positive in..positive out" mindset for  about 4 weeks...and I'm telling you..when I made that declaration-it's like I threw down the gauntlet and my brain said, "We will see just how positive you can be, Little Missy!"  (My brain uses the  Wizard of Oz voice when it says this, you know, the "I'll get you My Pretty!" voice) 

I try..I mean a really think I try to be encouraging. The whole reason I started this blog is to encourage others to fight this thing...to get down and dirty with it...to not let it win, rob our joy or run our lives.  Well, my friend--my fight is waning. I'm tired of it, I've had enough and I'm full. When the first few symptoms reared their ugly head this past July, I think I handled it pretty well...then again in October when a few more popped back up...I still looked for the positives. And now, while I do look for the positives...and feel blessed in many ways...I still have to get out what and how I'm feeling and I just feel...in a word...BAD.

I've become a liar. I make no apology for it. I'm a stinking liar.  When someone says, "How are you feeling?"  I say, "I'm fine"  or "I feel good".  Who really wants to hear, "I feel like crap, I can't feel the left side of my face and everything you are saying to me sounds like the voice of Charlie Brown's teacher (wah wah wah wa wa wah), the back of my head is pulsating with every heartbeat and my right hand has been  numb since 6 pm last night (time now..10:26 a.m.), about every other hour I think,"maybe I should go to the emergency room" , remind myself of all the Chiarians that have recently passed away (9 this year that we know of), then brush it off by saying to myself-"Quit whining-it could be soooo much worse".    I KNOW no one wants to hear THAT.  So, "I'm fine" basically covers it.

I feel like there is no one to tell (thank you, Katrina Powell for FB chatting with me enough to get me out of that funk for a few hours) that I can be real with.   Whether that is reality or my skewed perception--I have no clue. I just feel horrible. I'm sad. I'm disappointed and I literally do not know what to do next.

Current doctor standings..picking up MRI tomorrow to Fed Ex to Dr. Kim.  Concerned that this has recurred because my Ehlers-Danlos Syndrome issues were not addressed prior to first surgery which may have resulted in the re- accumulation of fluid in the arachnoid cyst area and my cerebellum settling right back down where it was)..so also sendiing fillms to EDS specialist in Bethesda, Maryland,..Honestly-I don't want to be my own advocate anymore. I want someone else to do it. (Thank you, Desiree Twait for all of the info you have provided me on EDS and CCI (cranio-cervical intability). 

Tonight, my husband looked at me and said, "Are you depressed?" I said, "no".. but am I ?  Desiree suggests that I haven't gone through the "grieving process" for my old life..maybe that's true-but since I've had issues my entire life..what did I really lose?  Some friends......yes. I grieve for that, friends are really important and I truly envy people with long term illnesses that have people that are there with them-in the trenches-fighting the fight-crying for the disappointments and cheering for every victory (Misty Daley..your bestie is truly blessed).  I feel sad that I don't want to go to movies  and am not up for running upstairs to the gym to work out.  I'm sad that I know working full-time as an RN is so challenging that I'm afraid of it. I'm embarrassed that I say the wrong thing A LOT and people always point it out and I feel stupid.   I'm disappointed that I have to explain this ridiculous condition to the same people over and over because I want them to do their own research...to come along side me and guide me to the next step, whatever that is.I'm mad at myself for being disappointed with them.
And I really feel bad that my husband has to deal with all of the above, every day. I'm sure if he were completely honest, he would admit the relief he would feel if he could simply send me back in for a refund.
So..yes..maybe I am depressed.  Maybe I shouldn't be sharing this in an open forum.
Maybe I should just continue the lie.

But then again...maybe you, or someone you love feels the same way..so maybe it needs to be said.
Maybe just having a voice makes a difference.  Maybe this is just an elaborate pity party on my part.
But do me a huge favor..Don't tell me to put on my "big girl panties" and deal with it (I've always despised that expression).  I might have to knock you smooth out--or in the words of Bon Qui Qui-- "I will cuuut you".

Just let me whine and lick my wounds. The fighter in me will return- I'm sure of it.
And when she does...she will track down that meek little voice whispering, "And then...it came back", wrestle it to the ground, slap a muzzle on it and lock it away for a good long while.
After all, I am from Mississippi.

Thoughts on my 1 Year Zipperversary: Chiari Vs. Karma

Jan 23, 2014 will mark my One Year Zipperversary!

Can you believe it?

One year since the brain surgery that altered my anatomy and changed my world drastically.

On the same day, my husband's mother was laid to rest, however, my husband (in agreement-and even the urging of his sisters-) was steadfastly at my side throughout surgery, making certain I heard his voice as soon as he was allowed near me in ICU. 

Since then, we have endured a lengthy recovery..which spanned six long months..a beautiful wedding at the ten week post-op mark and a lovely trip to Paris. 

I've run the gamut of emotions in the past year, or really, I guess since my diagnosis about a year and a half ago. I've delved into research, embedded myself in Chiari, Chiari nutrition, treatments, neurologists, neurosurgeons, meds, you name it..I've read about it, tried it, written about it..chewed it up and spit it out. I've gain friends through this disorder, I've lost friends by the same token. 

I've learned that Chiari takes lives and that I need to live mine to the fullest today and everyday. 

Recently, someone told me, "it's not Chiari, it's Karma"...obviously this person doesn't like me very 

much-and she is ignorant about the disorder. 

Chiari doesn't just show up like a bad omen. We are born with it. It lurks around within us waiting to reveal itself at the most inopportune times. 

For myself, it tends to show up when I'm busiest, under the most stress or desperately NEED to be well. Dizziness, fatigue, Chiari-headaches, Ice pick headaches, tinnitus, vision loss..they NEVER show up when I'm just hanging out writing or taking a nap. 

One misconception that bothers me at times is that some people think that once you have the surgery, you are magically CURED. 

I guess what has disappointed me the most is that initially, I felt cured. I had pain, but it was surgical pain, not Chiari pain. I could hear clearly, my brain fog had lifted, blurred vision gone, tinnitus gone, trouble with word-finding greatly reduced. 

To have these symptoms recur has been disheartening and honestly at times has brought me to tears. 

I have had enough of this ride and am ready to get off. 

But I can't. SO I stay on an make the best of it..like when I was a kid on this ride at the county fair.."The Spider", it looked like a giant spider with little cars on each "leg" that spun around in circles individually as the legs rotated and rose and fell. Every time I rode it I was glad when it stopped..one year I got on and it was just about over. I had kept my eyes tightly closed the entire ride, as it slowed, I warily opened my eyes and peeked out just to hear someone in my car shout, "One More Time!!!" 

Much to my dismay, the ride operator gave a thumbs up and started us up again, by the end this time, tears where just streaming down my face. I was hot, nauseated and my long hair stuck to my cheeks. 

I WANTED OFF!!!

I remember the relief as my shaky legs hit the solid ground and a walked to a bench where I sat until once again all was right with the world. 

Sometimes I long for that, for all to be right with the world. 

To not fear a headache, to be able to run without head pain, for my glands that are still squished and in shock to kick back into action and my metabolism to get going, to not mangle about every other sentence I say by finding the wrong word, to not say, "What? I didn't hear you" constantly  and to have just one person whom I can explain it all to that totally gets it (one that is NOT a Chiarian). 

So, I guess being here at the one year mark, I look back at the year to see what the take away is. 

What do I take away from the experience? What did I learn? What can I share? 

A friend told me just prior to surgery to, "Give in to the process.." 

To just accept all that went with surgery, not be anxious and just flow through the steps as a process. 

That is my take away. 

Still, a year later, I'm merely giving in to the process. 

This doesn't mean that I don't cry or get angry or feel self-loathing. 

I feel all of those things and then some. I feel them fully. I don't hide them or stuff them down inside.. 

THEY are part of the process. I give into them. When I try to wrestle them away..it's more difficult. 

When I try to work through a headache or read with blurred vision-things just get worse. 

I give in to the process. 

No, I don't let Chiari win..I just decided to quit hating it and to welcome it like a friend. It is part of me...and I am "fearfully and wonderfully made".  

With the support of my loving husband, precious family and truly incredible friends...the past year was really a cake walk.  Just a process to go through. 

I'm thankful for that. I'm thankful that I don't hide behind false bravado or give in to self pity. 

I take every day for what it is..a priceless gift. 

So to my reader that spat at me: "It's not CHIARI..IT"S KARMA"...

My answer is..IT"S BOTH!

According to Dictionary.com the definitions of karma are:

                                  karma

1.Hinduism, Buddhism. action, seen as bringing upon oneself inevitable results, good or bad, either in this life or in a reincarnation: in Hinduism one of the means of reaching Brahman.

2.fate; destiny. Synonyms: predestination, predetermination, lot, kismet.

3. the good or bad emanations felt to be generated by someone or something

So, I'll take all three definitions: 

Chiari yields inevitable results, good and bad.  Since I was born with it..it is my fate, my destiny and it does emit good and bad feelings. 

So, could one say that perhaps 'karma" is a PROCESS? 

Thank you to the reader that put me on this path of discovery. I love being  challenged to learn and explore my own knowledge, thoughts and feelings.

So with this new knowledge I forge ahead into my second year of recovery. My surgical scar long since healed and my hair grown back in, and I smile. 

Wherever you are in your Chiari journey, I urge you to give in to the process..but never give up the fight. This is your body--the one God gave you by His choice..His design.  This is your fate, your destiny...your KARMA...
Embrace it. 

Chiari may be the Culprit

DO You think it could be Chiari? Are you looking for answers?
Review this comprehensive list of Chiari Symptoms and see if you should consult your doctor.

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.