Happy Birthday to ME

Ok, well technically, it's one day until my 1st anniversary of my posterior fossa decompression, c1 and c2 laminectomy, and duraplasty.

I'll have some kind of post up if I can manage to get in front of the computer, which would involve getting out of bed Friday, which I am terrified to do, because I have now convinced myself that the ceiling will fall right on my head, shoving my skull on its unstable vertebrae down into my butt ( thanks a lot, Queli ;) ), and once everyone appreciates the irony of me having my head removed from my bum, I'll have to start all over again.

Little bit of PTSD? NEVAH!!!

I would like a rousing round of comments of "Happy Birthday" with the words changed to reflect Chiari as each of us has experienced. Or haiku. Or just prose. Who needs rhyming couplets? Not I!

So if anyone does happen to see the sky falling on November 30th, no worries. Just avoid my neck of the woods.

Hehe.
"Neck of the woods"
I'm so punny....

Concave Skull

Why the hell didn't anyone tell me my head was going to cave in?!!!

It scared me to death Saturday morning to discover my flat zipper had developed a major dip right below my handy dandy new titanium skull.

Turns out major swelling starts to subside around this time (10 weeks post-op)

This should have been written somewhere.

I thought my butt had swallowed the rest of my brain.

Anyhow, heads up for those going into surgery.

It is apparently ok to develop a crater in the back of your head.

Holy Hair Batman

Ok, so I brought up hair again.

It has been a constant concern for the last several weeks since I haven't had any from the scalp down.

The ponytail fall
Pros: worked well combining it to my existing hair in the front. It as also good because it only takes seconds to go it, and is an instant hair-do.

Cons: It is heavy, and caused some added neck dicomfort. Also I felt a little I-Dream-Of-Genie at times with a ponytail that has to hang high (since it has to attach to some kind of hair)

Wig
Pros: Slip it on, and instant hair. You can buy a couple and switch em out for different moods.

Cons: For long hair, could not work well. For me, I had to ditch the wig. I started out with long hair, so now I still have long hair on the top and sides. The wig looked odd with that much hair tucked under it. My hairdresser said I could cut the top and sides so it would fit better......but I am not ready to let go of the hair I have left.

Scarfs
Pros: Quick and easy

Cons: Not so attractive. Feels like an obvious that I am hiding the scar and baldy areas.


And finally... the one I have been waiting to be able to use
Hair tracks

Pros: I love em!!! I got the ones made of human hair, the same color as my own. They glue in, and can stay in thru washes and such, until I decide to take them out.

Cons: Made need help gluing them in. The scar is an issue also. You don't neccessarily want to glue the pieces to the scar which of course is in the center of the wreck. I glued two tracks in close to the crown, where my scar is fairly healed, and just left a small part unglued in the center, at the point of the scarline.
note: You also need some hair growth before you can use this option.

Anyhow, that has been my journey through hair options.

So far, I find the track working the best. When I go out, only the people that know me, know it isn't my hair... And most of the people who know me are amazed and confused that my hair is back.

Yesterday was my first outing with the tracks, and it was the first time I felt like I looked fairly normal......and thus the only time I felt like messing with making myself up some.........because I felt less like someone who just had brain surgery, and more like everyone else out there.

Coping Mechanisms

Exactly how DOES one get through brain surgery, recovery, and life in general? If I cut through all the seriousness, which I do love to do, here are my recommendations. I have been beta testing all of them, with varying degrees of success, and can quite honestly say they have made the past year much more bearable.

1. If you're single, sign up for an online dating site.
2. Buy a really expensive European designer scarf to cover your landing strip.
3. Plan a trip. Or trips. Or career change for when you recover. And invite along a family member you're trying to make peace with, then plot in secret to sell them once you reach North Africa, which they'll have never seen coming, because they think after brain surgery you're all calm and peaceful and forgiving.
4. Get a cute physical therapist, preferably with an accent and who plays contact sports.
5. Take up a musical instrument. The more obscure, the better. You don't have to learn to play it while recovering, just start thinking about all the covers to your favorite songs you can butcher.
6. Blog a lot. It helps to hear others voices and perspectives, especially for a condition where so little is known. But maybe do it anonymously, so your doctors don't read it and refuse to treat you any more for "slander".

Chiari is:

Fill in the blank.

I am doing a fundraiser for my upcoming surgeries in Sept. and want to give a flyer to the guests on Chiari. Part of it would be nice to put it into Chiarians words.

So fill in the blank on one of these questions:
Chiari is:
A Zipperhead is:
Chiari effects me by:

Or come up with your own.
I am only taking a day or two of comments because I am getting these flyers printed......so help!!!

Velveteen Rabbit

(reposted from other blog- regarding spiritual jouney towards surgery next month)
Ruffled, worn, and falling apart, the veveteen rabbit rest speachless on the floor.
The trip has been exhausting, and the journey long.
Each gentle guiding stroke, is now obvious from the prevailant bare areas where fur once lay, soft and clean.
The fur that remains is now dull and blemished.
The process of becoming real is not so pretty :(

I can't help but look towards surgery, and be reminded of the velveteen rabbit.
My body is worn, ruffled, and falling apart. And it will only feel and look worse in the weeks to come.
What will come from it though is one more step towards what God planned for me to be.
A lot of people think Chiari falls outside of the grace of God; outside of His original plan for me; not what He wanted for his child.
I don't agree.
Although the journey has been long, and its trials evident in my worn fur.........it has all been a series of AFGOs leading me to the raw realness of who I am to become.
AFGOs for those who don't know me, stand for Another Freakin Growth Opportunity. Ofcourse the original version of that I was given has been cleaned for all eyes and ears to take, but either works.
Life is full of AFGOs.
Ugly, painful, wonderful, AFGOs which both make and breaks us.
Yes make AND break.
Not either or.
Refinement burns out the ugly dark pieces. It isn't a gentle process that you come out of unscathed.
The brakes and tears are important; they are Gods wind for us, making our root in Him stronger.
Never feel sorry for me for having this condition. It isn't as debilitating as it is abilitating.
It has taught me far more than words or teachings ever could.
It has planted me stronger in my faith, and brought me closer to God.
But don't expect me to face each new AFGO with a grin on my face.
I don't like 'em.
There, I said it.
AFGOs stink.
They are uncomfortable, usually painful, undisirable times.
They are meant to shed off that next layer to get to the core. And like on onion, as they layers are removed, tears may result.
And this week(or next, I am sure) "How are you?" isn't the best way to greet me if tears make you uncomfortable.
I am emotional, almost bipolar in my degrees of emotion in fact.
I'm am smack dab in the middle of an AFGO, and I ain't happy about it.
But I do still have joy. Joy in the fact that I am held to a greater purpose than this body can possibly restrict me from.
I know that there is good on the otherside of this mountain.
So a better way to greet me perhaps it to just say "keep climbing".
I am almost at the peak, where I will be able to see the road for miles ahead.
Until ofcourse, I hit the next mountain. Unfortunately our lives are not made of one big test, but a series of 'em....... us humans are quick learns as we think we are.
So feel free to join me on this journey ahead............just know you might see tears along the way........and that's okay.
I gotta mountain to climb.
Ofcourse, if someone has a drill to go right through it, I will take that too.........
But for now, I'll keep climbing, loosing some fur along the way (Huge hunk from the back of my head to be exact) Each step to becoming more authentic in my walk.
Sorry this blog is so full of metaphors...........just thought you all could relate more than you could to brain surgery. We haven't all had someone drill into our sculls, but we have all been on this journey.
Take care of you,
Q

Defining Self Post-Diagnosis Pt 2

Queli has a post up about defining self post diagnosis. This one has been my struggle of late. I am 8 months post surgery, and in the throes of a mid-mid life crisis that any maudlin poet would envy.

Pre-diagnosis, I had studied theater professionally and was a trained pastry chef. Two years ago I left NYC and moved closer to my family because I just wasn't feeling very well, and needed a better support system. When the Chiari was diagnosed, everyone who was close to me seemed to have their worlds turned upside down. I'd been "sick" since my late teens, with episodes going father back..some linked to confirmed auto immune disease, some unexplained..until we learned about Chiari and syringomyelia.

I then entered into the realm of a "brain surgery patient" one in which I've been settling into for the past 8 months. There was an unexpectedly difficult surgery, and a physical recovery which went slower than I was told, and the emotional recovery I am still going through. And I find myself asking.."Who am I now?"

I am not the same person.

I will never BE the same person. For one, I am minus the bunny stomping pain headaches and myriad of bizarre symptoms, plus I have that awesome scar running down my neck. I'm gleefully torturing my physical and occupational therapist twice weekly, but I don't know if I'll ever have the same stamina that made working in a professional kitchen possible. And I don't even know if I have that drive anymore.

My journey lately has been a reclamation of self, and a moving away from my biggest definer being brain surgery ( though that's still my trump card when anyone questions me. Try it..they have no comeback). I'm finding that the fear and overwhelming awareness of being someone with a brain malformation is not what I want the biggest impact in my life to have been. I am not a parent, I am not a spouse, so my sense of impact on the lives of those around me is limited in a different way.

I've gone through my life thus far as seeing myself as more of an artist..a chef, an actor, a blogger and aspiring writer, a person with a need to tell some sort of story, illicet some sort of emotional response out of others, and a pathological need to be understood. And suddenly, I am not scared of life anymore, I'm simply scared of not living it enough.

I do not claim that my story has more merit, my experiences more worth, or that my journey has been harder. I do claim that the catalyst for searching and self inventory has been different than those without tonsillar herniation may have had. Sometimes, in all this, I feel very alone. I can google my condition, I can download abstracts and PDFs, I can peruse support groups, and again I can learn what I am in term of a medical standpoint. But I still can't figure out who I am now.

I'd love to hear what others have experienced with this, and how their lives changed for the better, how their choices changed..not from a physical limitation, but from an emotional upheaval.

An Introduction, Puglet Style

I'm not sure the best way to introduce myself here, in this new forum. I've blogged since 2004 about various aspects of my life, the good, the bad, the misspelled, and when Chiari entered the picture last year I started to write about that. It was a way for me to make sense of everything, to reconcile myself with everything..a fast and furious diagnosis, a surgery I was unprepared for, a recovery I was even less prepared for, and the aftermath of a life and body changed. It's still something I'm working out. I told Lace when she found me months ago that I worried how my "voice" could impact others, and I told Queli today when she graciously invited me to this blog that it was still a concern.

So who am I? This is pulled from a post I did on May 1st, Blogging Against Disablism Day.

"I am a 30 year old woman who stands 5'5, a bit less since my last surgery. I have legs that are strong, a stomach that is soft, arms that once could easily hoist 50 lb bags of flour and fingers that could crimp dough and shape fondant into rose petals and dip quickly into hot sauces to bring it to my lips to taste. My hands are less steady now, my arms struggle to lift two lb dumb bells, my shoulders are less muscle and more scar tissue but I'm fighting and slowly winning the battle to come back and plunge my arms back into bowls of batters. This incarnation of a brain surgery patient is only the latest. It will not be the last time I come back and rebuild.

I am a woman who has had more surgeries and emergency room visits than I have had years on this earth. I am a girl who is still scared that her past, present, and future will all come to a screeching halt in one of those curtained cubicles, who will be left a footnote in a chart, a diagnosis code, tucked away into someones computer and not into anothers heart. I do not want to go gently or quietly into that dark night. I want to write my own history, experience my own present, and plan and shape a different future.

I am an actor, a writer, a pastry chef, a slacker, a comedienne, a dreamer, an idealist, a humanist, highly intelligent yet ridiculously stupid and a ball of raging fury and fight and one liners and balloon whisks and prescription bottles and tattered plays and dog eared books. And beyond all else, I am a fighter.

I have fought my immune system, my thyroid, my womb, my kidneys, my joints, my neurological system, my colon, my brain, my genealogy, my genetics. I have fought my parents, my friends, my lovers, my employers, my co-workers, my teachers, my classmates, my doctors, and myself. I have warned others to not limit me, or judge me, or change me, or try and make me safer or quieter. Sometimes they listen. Sometimes they ignore. And when they make that choice, I make mine, which is to fight louder and harder and longer and more dangerously, to show that I can, and that I have no limitations.

I am a person who embraces being unique and seeks out what's different. I am not standard. My hair is too short, my laugh too loud, my speeches too long, my silence too deafening, my IQ too high, my potential oft ignored, my choices questionable, my decisions irrational, my fears insurmountable, my passions all consuming. I use humor as a defense, I equate food with love, I'd rather read a book than talk to people, I'm scared of making friends, I hate being exposed, and yet all I want is to be understood and embraced and have someone look at me in amazement and wonder the same way I look at this world. So time after time, I choose to lay myself open in a theater, or kitchen, or on paper, my ways to show you who I am, because I'm not just a patient under a scalpel, an image on a CT scan, an appointment in a book, and while you can tell me what I am, you will never tell me who I am.

I do not know how to define myself, or define my disabilities. All I do know is that I will not let anyone else try and do it for me. My damage is mine. I have earned it."

And now? I am still that woman. But now, at 8 months after my surgery, I am pulling up to 70 lbs at physical therapy. I am going to Spain in October. I am going to teach for two months in India. And I'm finally learning all the meanings behind " decompressed."

Who Am I Today?

I was diagnosed with Chiari on 9/26/06 and I am amazed at how much my health has declined in only a year's time. I have had all kinds of battles in my head as I desperately try to grasp a tiny thread ~ trying to remember who I was, who I am and who I am becoming. Chiari has forced me to take a good, hard look at myself ~ will I fall or stand in the face of trials and hardships? My colors are true ~ my faith in the Lord, strong ~ but it's still a struggle.

My life journey has not been an easy one, but it has defined who I am and has made me strong. Several near death experiences ~ numerous surgeries ~ witness to the death of my brother ~ a child of divorced parents ~ survivor of two miscarriages ~ and now, Chiari. I AM a SURVIVOR ~ I won't go quietly into the night without a fight. Eye of the Tiger ~ Once again, I am facing my Goliath, but I know that God has incredible plans for my life. He will use this bump in the road for good.

Romans 8:28 And we know that all things work together for good, to them that love God, to them who are the called according to his purpose.

I feel incredibly blessed that God has placed this struggle in my life so that I have the opportunity to draw closer to Him.

Defining Self- post Diagnosis

Yesterday, I was talking to someone about redefining myself after Chiari.
Thought it would be an interesting topic for discussion here.

I know for me, I had already had to go through that awkward adolescent phase after I came into recovery for my eating disorder 10 years ago. I had to figure out who I was without the anorexia.

So I thought I was fairly confident in who I was by the time the news of Chiari came.

But once it got to the point I couldn't work anymore, I found myself once again, undefined.

Prior to Chiari, I was a student, a therapist, an intern, and strived to be the best at all my roles.

Then in what seemed like an instant, it all faded. I stayed in school to keep my insurance, but my drive was no longer there and my grades went to mediocre at best.

I had no identity.

I was stripped of everything, and left with only two roles in life; being sick, and a child of God.

And believe me, I wasn't like "WooHoo! It's just you and me God! How awesome!!"

No, I was far from it. Even though I clung to my relationship with my Lord, I still could help feeling somewhat abandoned.

How lonely that time was.

Sure I had a lot of support, and people who cared about me. But I still felt alone inside, not sure of what was to be expected.

And I even avoided the Chiari boards online. I didn't want to know what others were going through because I was afraid to know what my future looked like.

It came to the point that I realized that I had to redefine my definition of self.

Who am I?

Who am I with this?

This started a new journey.

One where I had to define myself my God's standards, not the worlds.

And the Christian community was not always supportive.

There are Christians out there that believe that illness is a direct result of sin, or separation from God.

How bogus.

God made this body, with the malformation.

So what do you do with that?

My redefining came from the struggle of life with Chiari.

I found myself in situations where I had to trust God solely to get me through.

And found through it, that my relationship with Him grew stronger.

I no longer felt alone, because He helped me feel the touches of all the hearts around me wanting to help......

Which I balked at first.

Miss Independent couldn't have someone help her with basic self care.

But I had no choice really.

And out of that lack of choice, I found that I had prided myself on something so selfish. I loved to help, but couldn't receive it. Which, when you think about it is crazy!

Anyhow, I babble sometimes relentlessly.

The point is, that through this process I found myself in a new place where I feel more in my own skin than ever before.

My roles, and who I based myself on before, did not give me the satisfaction that I sought.

But I didn't realize it, until I finally let go.

The Big ?: How much hair will they take?

I know when my sister faced a very serious brain surgery (Non-Chiari), involving a good chance of possible death, or further stroking, or rupturing of her anuerysm. She had only one question:
How much hair are you going to shave?

Sadly, this is a concern for many of us. I know it was one of my first questions when I faced my first surgery (decompression). And this concern came from someone who actually shaved her head in college to make a few more bucks for rent.

Surgery is important.

But hair loss is personal.

And especially since it is out of your control. You aren't going to the hair dresser, and saying go ahead and shave it. You are going under, knowing you will wake up with less hair.

It is a legitimate concern.

Experience has taught me, that surgeons aren't into shaving more than they have to.

I am sure the amount of hair is based on the surgeon, and the person......and possiblly based on what kind of mood the surgery prep guy is in at the time of hair removal.

For me it has been as followed:
PF Decompression: on the back of my head from the indent down was shaved.
Shunt: A small patch on the front right side, directly in line with my right eye on the very top of the scalp (it was completely not noticable on me)

Ironically, as I face sugery, I am thinking again: How much hair?

I am scheduled to have the ICT, which means two bolts in the sides of my head.
Then I have the PFR, which is the decompression in the back;
Plus they are using a skin graph, which is going further up the back.
And then they are putting in a drain (which mostly likely will go in the upper right side where my old shunt was, and there is already a hole in the scull)
And possiblly a shunt added to the mix.

It sorta sounds likemy head will be more shaved than not.

Anyhow, I sort freaked out the other day when I realized this could be the case......(when I was already in tears from pain, and pain anticipation, if you read my post on my other blog)

But now I am thinking I might turn this uncertainy around around.

I am asking the docs at TCI how much, and if more hair is being shaved than not, I might have it shaved the day before I go up so the hair could be donated.

It is a meek way to gain some control in the situation I am sure.........but it feels better to do it that way, then to wake up with crop circles.

If the hair removal will be minimal, I will just let my hair dresser deal with it post-op.

There is nothing quite as refreshing as post-op hair cut :) Specially since my hair is usually dry and dull the months after surgery.

Introductions

ok, so I am starting this blog to create a place to ask questions, get answers, and share experiences.

Feel free to jump in at any time :)

If you would like to be able to submit your own posts to this site, please send me your email address to queli.is@gmail.com I welcome Chiarians to do this. It would just make this blog more enriched with ideas other than my own.

about me:

I am Queli, 33 female diagnosed in 2001.....my 1st of 5 surgeries was in June of 2002 (PF decompression), I have had a shunt, and then had it removed. I am scheduled for a revision on Sept 10th at TCI.

What about you?