Conquer Chiari ~

Next Saturday, September 22nd is the annual Conquer Chiari Walk Across America.  

 "The Conquer Chiari Walk Across America is an annual fundraising and awareness event comprised of a series of local walks held on the same day. In 2011, the event was held at 47 different locations, involved more than 5,800 participants, and raised over $405,000. We are proud to say that 83% of the money raised will be used directly to fund research projects and that only 17% was required for overhead and expenses. This year the walk will be held on September 22nd, and it is our goal to raise at least $450,000 for research "

Each year I put off blogging about the walk ~ you see ~ fundraising is not really in my wheel house ~ but how can I give you the chance to donate and support the quest to find a cure and boost awareness for Chiari Malformation if you don't know about it? Click on the link below if you would like to sponsor me and donate to help Conquer Chiari

 

https://www.conquerchiari.org/ccwaa12/LacieHeiser/donate/
 

Post Brain Surgery 2008

I wanted to write something meaningful and inspiring about Chiari, but honestly I just don't have it in me this year. The picture to the right was taken a couple of days after my brain surgery in December of 2008. I was thankful to be alive ~ waking up from brain surgery was the toughest thing I've even done and as close to death as I ever want to be in this lifetime. I was optimistic at the time ~ after surviving brain surgery, the rest of life is cake, I can do this!

Physically, I've healed from the surgery ~ but know full well that surgery was not a cure ~ there is no cure for Chiari but there is always HOPE.  This has been my mantra, but it's been hard to believe, especially this summer. It's been a particularly difficult summer symptom wise. I've been plagued with a heavy dose of vertigo and headaches that won't go away. There's no reason for the sudden onset. My newest MRI revealed nothing new in my brain ~ just a constant reminder that Chiari is here to stay ~ like it or not!

Zipperhead 2008

Just last month my youngest daughter had an appointment with a neurosurgeon so that we can get her in an annual cycle to keep an eye on her brain tail. I am consumed with guilt for passing along Chiari to her and pray that a cure is found before the day comes when she might need surgery. Chiari has robbed me physically, emotionally and spiritually; I hope that through research they will find a cure some day soon.

Until that day ~ I have vowed to never give up living ~ pushing forward ~ experiencing as much of life as I possibly can. In the famous words of Morgan Freeman,

Get busy living or get busy dying!

I See You

So after dealing with glasses most of my life, I finally overcame my fear and DID contacts.Or as to quote my favorite Sage ~

DO OR DO NOT ~ THERE IS NO TRY

This is no small feat ~ I am so freaked out about anything getting in my eye. Every time an eyelash drops in there I freak the freak out ~ seriously! If you've seen the FRIENDS episode where Rachel must have eye drops ~ that's totally me




I think I've always rationalized that my eyes were way too squinty to ever get contacts in there. I've been trying to do something that scares me, weekly, to try and keep myself feeling alive and growing. My first visit to the doctor was a total failure. I spent an hour trying to get the contacts in ~ I was blinking like crazy and couldn't manage to get the contacts past my eyelashes. I told my doc, if you can get contacts in my eyes, then I can ~ otherwise let's just end this struggle now. Well, with some creative maneuvering, she got them in.  I was determined to do the same. Since I couldn't master putting them in and out 3 times during my appointment, they wouldn't send me home with a test pair. After waiting two weeks, I had my second appointment to prove myself once again.

The second time I was more relaxed and determined. I kept hearing in my head ~ "Lace, you got this ~ you had freaking brain surgery ~ you can put contacts in your eyes ~ press on"
So I did ~ and they let me take home a couple of pairs to practice with. My next appointment is in a week ~ if I can prove that I have mastered putting them in and out several times, they will write me a script.  I've worn them every day since, anywhere from 4 - 12 hours and have done ok. Sure, there have been some tense, curse filled moments, but I've stuck with it. Practice is making the whole process a bit easier.

I still have to wear reading glasses to work on the computer and read, but it feel liberating to not need glasses. My eyes feel so much stronger and relaxed at the same time.  I challenge you, if you've always been curious about contacts, to DO contacts ~ it's totally worth it. Good to know I don't need a passel of friends to hold me down to get my contacts in ~ but I know they would if I asked....

Change My Life

Life is a journey, not a destination ~ I keep telling myself this over and over again. There is no smooth coasting time that last more than a day it seems. I continue to face challenges each an every day. Lately, with no big event that could have possibly causes a shift within ~ I've been plagued with VERTIGO.

Sure, I'm familiar with the occasional cycle of vertigo one day ~ headache the next ~ but this isn't what's been happening. I've got it non stop ~ like I've been on a serious Spring Break ~ off the rails ~ party till you drop cycle for a month now. I would make Captain Jack Sparrow extremely jealous ~ he would think I had definitely drank all the rum.

I've done a lot more research on causes of vertigo and anything that makes senses is cranial nerve compression. How do I make it stop?! This vertigo is way worse than anything I had before decompression back in late 2008. Maybe I've just had a very long migraine and vertigo is the side effect? To top it all off, my local neuro surgeon has come to the conclusion that there's nothing wrong with me. oi!

After all that's said and done, I guess I should give myself a break and be thankful that even with my world spinning all around me, I've found the strength to keep on keeping on and even try new things that are outside my comfort zone (stay tuned for the next blog entry)

The song ~ Change My Life ~ really hit home. I keep battling with God ~ just when I feel like it's impossible to put me back together, I am greatly encourage. But please start with my heart ~ it's in dire need of  healing.

Change My Life ~ Ashes Remain

I'm still awake tonight

I'm broken up inside

I want to run

but I don't know where to go

I'm calling Your name through the pain

will You turn Your face to me?

I'm crying out

I need a miracle

If You could make the sun burn through the night

and You could make the dead man come alive

if You could make the oceans all run dry

then I know You can change my life

I know You can change my life

I wanna know who You are,

that You can fix my heart

and I don't have to run anymore

open my eyes, let me see

give me hope and set me free

'cause I don't want to be the way I was before

Chorus

give me something to believe in

something worth fighting for

something that I can't ignore

You could make the sun burn through the night

You could make the oceans all run dry

Chorus

I need You to change my life

I need You to change my life

Do You Hear What I Hear?

MRI's take fascinating pictures of the body. When perusing the my latest set of MRI's photos, this one made the most profound effect on me ~ I'm still trying to figure out why.

So, let's talk about ears....Genetics are definitely present in the shape of ears. I can see Morrison genes for many generations in the shape of my ears. For as long as I can remember, I've had freakishly acute hearing. I've made claims of hearing earthworms moving underground! Well, that might be bit of a stretch, but I've been known to be awakened from a sound sleep by a tiny noise coming from the basement of the house. Maybe this is why I'm not getting much sleep ~ EVER! I distinctly remember waking up when I was a little girl by the sound of my long haired dachshund lapping up water from his bowl. I would crawl out of my bed and sit beside him and watch him drink until he finished the last drop.

There are certain sounds that resonate louder than others ~ the crashing of ocean waves, new born puppies yipping, tires driving on a country dirt road, a bubbling creek on a hot summer day....And then there are other sounds that send me over the edge ~ the sound of motor cycles comes to mind first. I have a pretty good idea why, the sound of a moped revving preceded my brothers death ~ You can't "un-hear" something. Sounds make lasting impressions in our minds that are tattooed there forever.

Since Chiari has railroaded my life, I've notices sounds more and more. Many chiarians lose their hearing ~ but me ~ I'm a bit of a hybrid and my hearing has gotten off the charts acute. I was hoping after brain surgery that my hearing would tune down a notch or two but it hasn't. So the real questions is ~ what am I supposed to hear and why?

Completely UnRemarkable

Current Scan 2012

vs
Original scan 9/26/2006

According to the Dictionary, here's the definition for UnRemarkable: not worthy of note or attention;

Lacking distinction; ordinary. 

I was hopeful, hoping the MRI would reveal something ~ anything ~ a new revelation that would explain away the pain in my head. Most people would pray for a clean bill of health with nothing to write home about. But I'm not a part of that 'most people' crowd anymore. Brain surgery kinda stole that from me.

I was driving to my neuro surgeon this morning, looking forward to seeing the very first surgeon I met after been diagnosed with Chiari in 2006. A book on tape was playing in the car and I was thinking about my answer to a question asked: 

"When everything is stripped away from you, what gives you the strength to keep on going?"

 If you had asked me this question 6 years ago I wouldn't have hesitated before answering, my faith in God, of course. He loves us, cares for us.... but today, I'm not so sure.  One thing did come come to mind though ~ I can't just submit to the pain in my body ~ I've got Chiari friends both far and near who need me, who depend on me for friendship and guidance. As if an unspoken prayer for validation was asked, as soon as I checked in at the doctors office, I sat down and logged onto my email to pass the time as I waited for them to call my name. There at the top of the new emails in my inbox was an email from a very dear Chiari friend. We had exchanged a couple of heart to heart emails over the past week and she was concerned about me. Lil ole me ~ out of all the others out there who clamor for her attention. I immediately burst into tears. She gets me ~ we are in the same medical predicament ~ surgical candidates and yet not wanting to go back to surgery just yet.

What was I doing? Yes, I was following doctors orders by getting another baseline MRI, but who was I kidding? I'm a TCI patient ~ they are without a doubt the best of the best in the world and are celebrated Chiari gurus. How could I possibly expect anyone else to understand my complicated condition? So long story longer, I was greeted by the PA of the office and not the surgeon I was looking forward to seeing again. Nothing was found on my MRI that signaled a need for surgery. He recommended I see a pain management doc and a neurologist to help me figure out what steps to take to get an handle on my pain.

I feel like a college grad who was sent back to Kindergarten again ~

Brain‍ MRI

Tomorrow I'm spending my morning lying very still in a MRI machine for two hours. I have made my peace with the noisy, magnetic machine ~ but I don't like them poking around in my head and spine, looking for something out of the the ordinary. Since Chiari is usually an "invisible disease" ~ a closer look is needed to find out the source of my pain. I have scheduled an appointment with a neurosurgeon the following week to go over the results of the MRI.

Approaching Storm

Elfin language:

Pres'tinin-The world is changing.

Hauranen bithnin-I feel it in the water.

Hunuthra meyahi-I feel it in the earth.

Ahustinin benilingi-I smell it in the air.

Storms in life seem to roll in and out like the tide. There's no stopping the endless thundering motion. Friday,
I found myself in a haze of deja vu as I sat patiently, waiting to hear my name called by a neuro-surgeon.

I've been putting off making an appointment ~ for about a year now ~ until my intrepid endocrinologist made an appointment for me.  I'm not a whiner or complainer, it's my first nature to grin and bear it ~ so that's what I've been doing for a while now. My doctor thought it would be a good idea for a local surgeon to get a baseline on me and keep an eye on me and my symptoms. Fair enough ~ but I wasn't really wanting to open Pandora's box, again.  

When the nurse walked in to gather my medical history I braced myself for a barrage of questions. I had to be thorough and brief at the same time or the appointment would have lasted several hours. I've got medical history and lots of it.! When she started questioning me about my surgery for Chiari I almost laughed at her when she innocently said, "your Chiari Malformation was removed during your surgery?" Seriously? It's not a tumor you can simply remove and go on with your life. I really wish the staff at neurosurgery offices would be a bit more educated on the afflictions of the patients.

I digress ~ after a battery of basic neuro tests, it was deemed that there wasn't anything noticeable wrong with me. Duh ~ a two hour MRI with and without contrast has been scheduled for a few weeks down the road. It will be good to check in and see what my Braintail has been up to. I'm not sure what to hope for. A part of me wants them to find a tumor that's been responsible for turning my life upside down. Another part of me wants them to find evidence of syringomyelia. My biggest fear is that the MRI will reveal nothing out of the ordinary. At this point I am needing something concrete ~ something to focus my anger on for causing pain again and again.

The irony of my invisible disease ~

Stand in the Rain

This song speaks to me on so many levels ~ and I identify with Olivia from FRINGE on so many levels, too. How perfect that someone put these two together. Why is it that I keep finding myself standing in the pouring rain ~ figuratively of course ~ I can't seem to get to my happy place. Toss and turn ~ kick and scream  ~ wrestling within. Is there inner peace anywhere in my near future?

What's lost will be found...I'm placing a lot of hope on this...

"Stand In The Rain" ~ Super Chic(k)

She never slows down.
She doesn't know why but she knows that when she's all alone, feels like its all coming down
She won't turn around
The shadows are long and she fears if she cries that first tear, the tears will not stop raining down

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

She won't make a sound
Alone in this fight with herself and the fears whispering if she stands she'll fall down
She wants to be found
The only way out is through everything she's running from wants to give up and lie down.

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

So stand in the rain
Stand your ground
Stand up when it's all crashing down
Stand through the pain
You won't drown
And one day, whats lost can be found

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

If You Want Me To

What inspires you to write, to share life's struggles? For me it's pain ~ pain~pain~pain.  For reasons I can't explain, I keep coming back to the same crossroad. For two weeks now I've been plagued with crushing Chiari headaches. The yo-yoing barometric pressure is mostly to blame along with stress of life. 

But what's the solution?  Unfortunately, there is no grand cure-all solution for me as a Chiarian. I'm still not convinced that a fusion surgery is the way to go either. Entertaining the idea of going to see a local neuro-surgeon to discuss the options of shunt surgery to relieve CSF pressure in me head...if you want me to...

Keep Looking Up

If you've been following my blog over the past 4 years, you know that I am a firm believer in signs. They can lead me in an unexpected direction, present clarity, be uplifting or just make me laugh until I cry.  I've been confiding lately in a wise friend of mine who has given me great counsel. Most recently, at the end of an encouraging email, a very simple yet profound message was conveyed ~

KEEP LOOKING UP

This wasn't a suggestion, but more of a wake up call ~ I've been looking down way too much lately and really can't remember the last time I lifted my head to the heavens and looked up. As a Chiarian, looking up isn't something we do much, because it physically hurts to look up and can cause a wicked case of vertigo. But I digress ~ God commands us to put our trust in HIM, search for that guiding light that shows us the way to go when we have lost our way.

Three times in two days I lifted my head to the skies after a torrential downpour and saw double rainbows. I was even able to capture them on my iPhone. The photo above was taken last night at the football field before the game. The rainbow is a promise that God will never flood the earth again ~ and HE always keeps his promises. But seriously, three times in two days? How many double rainbows have you seen in your lifetime. I've seen a couple but never been able to capture them on film to share with others.

The rainbow sightings have been humbling ~ giving me new perspective and hope. May you been blessed with the sighting of a double rainbow, too.