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.

Peter/Olivia

What would life be like without your presence in the lives of others? The fourth season of FRINGE is centered around a world without Peter Bishop ~ I get it, this is part of the bigger story ~ but that doesn't mean I like it one little bit!

Actually, I've thought a lot about this theme ever since I was diagnosed with Chiari ~ what would life be like without me on this earth anymore? The concept is a hard one to embrace too closely without letting it consume me whole. I have a questions for other Chiarians and other assorted brain surgery survivors.

How did you cope with the overwhelming feeling that you just might not make it back from brain surgery?

 I used to think that I was really good at coping, pushing through very difficult times, but now I'm not so sure. The physical scars, although healed up nicely, will always remain on my skin as constant reminders of the battles I have survived. Now, almost three years post brain surgery, the emotional scars are bubbling up to the surface. Sure, I survived, I'm living, breathing, carrying on at the thing we called life...but at what cost?

I'm not the same person today that I was prior to my Chiari diagnosis. On that profound day,
September 26, 2006, I think I built an instant fortress around myself ~ guarding my emotions, protecting my heart.  I think a big part of me wants to walk away from everything prior to surgery and start a new.

The surgeons prepared me for the physical pain I would endure, the long recovery road, but they didn't prepare me for a total fall out of who I am and who I am becoming. This is probably totally gibberish to most readers out there, but I have a feeling a bunch of you know exactly what I am talking about.

Letting Go and Taking the Leap

"We must be willing to get rid of the life we've planned so as to have the life that is waiting for us."

Joseph Campbell

I watched this trailer this week and it inspired me and gave me hope ~ I hope it does the same for you.

Finding Joe


Finding Joe - Trailer V.7 from pat solomon on Vimeo.

Meant to Be

I've strayed way of course lately ~ seemingly drowning in a vortex of the unknown ~ and then I heard the lyrics to this song ~ a quiet, strong reminder that I am meant to be here on this earth ~ sharing my gifts ~ I am part of  greater plan. I hope this song speaks to you, too.



Long Before You Drew Your First Breath 
A Dream Was Coming True 

God Wanted to Give A Gift To The World 
So He Wrapped It Up In You 

Every Step That You've Taken 
Every Move That You Make 
Is Part Of His Plan 

You Were Meant To Be Touching 
The Lives That You Touch 
And Meant To Be Here 
Making This World So Much More 
Than It Would Be Without You In It 

You Were Meant To Be Bringing 
The Gifts That You Bring 
And Singing The Songs 
You've Been Given To Sing 

You Are Perfectly, Wonderfully, 
Beautifully Meant To Be 
You Were Meant To Be 

Long Before You Took Your First Fall 
You stumbled to the ground 
God started telling the story of you to the angles around 
Every failure and victory 
Everything inbetween 
Its all in his hand 

You Were Meant To Be Touching 
The Lives That You Touch 
And Meant To Be Here 
Making This World So Much More 
Than It Would Be Without You In It 

You Were Meant To Be Bringing 
The Gifts That You Bring 
SOURCE: LYBIO.NET 
And Singing The Songs 
You've Been Given To Sing 

You Are Perfectly, Wonderfully, 
Beautifully Meant To Be 
You Were Meant To Be (yeah) 
Meant To Be 
You are 
You are 
You are meant to be 
You are 
You are 
You are meant to be 

For every breath that your taking 
And every move that you make 
It's a meaningful life you've been given 
Live it well 

You Were Meant To Be Touching 
The Lives That You Touch 
And Meant To Be Here 
Making This World So Much More 
Than It Would Be Without You In It 

You Were Meant To Be Bringing 
The Gifts That You Bring 
And Singing The Songs 
You've Been Given To Sing 

You Are Perfectly, Wonderfully, 
Beautifully Meant To Be (yeah) 
You Were Meant To Be (yeah) 
You Were Meant To Be (yeah) 
You Were Meant To Be 
To Be 
You Were Meant To Be

What if

From my heart to yours ~ what if our trials are blessings in disguise ~

We pray for blessings

We pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

All the while, You hear each spoken need

Yet love us way too much to give us lesser things

‘Cause what if your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights

Are what it takes to know You’re near

What if trials of this life are Your mercies in disguise

We pray for wisdom

Your voice to hear

And we cry in anger when we cannot feel You near

We doubt Your goodness, we doubt Your love

As if every promise from Your Word is not enough

All the while, You hear each desperate plea

And long that we'd have faith to believe

‘Cause what if your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights

Are what it takes to know You’re near

And what if trials of this life are Your mercies in disguise

When friends betray us

When darkness seems to win

We know the pain reminds this heart

That this is not, this is not our home,

‘Cause what if your blessings come through raindrops

What if Your healing comes through tears

And what if a thousand sleepless nights

Are what it takes to know You’re near

What if my greatest disappointments

Or the aching of this life

Is the revealing of a greater thirst this world can’t satisfy

And what if trials of this life

The rain, the storms, the hardest nights

Are your mercies in disguise

Who's Your Guardian?

Today, we had our third snow storm in the last 7 days. The girls had a snow day today and the hubby was kind enough to lend me his SUV. Better to put the brain surgery survivor in the safest car during an ice storm. The drive to work was pretty uneventful ~ slow going, but nothing too treacherous.

When it was time to go home around 5 today, it took a good 15 minutes to de-ice the car that was completely encased in a day's worth of sleet and ice. Seat belt securely fastened, defroster on, snow button depressed, windshield wipers wiping away, said my prayers asking for a band of angels to protect me and others on the road, I was finally ready to join the other crazy drivers on the freeway.

The roads were challenging ~ the sleet/sneet mixture had changed over to rain which was quickly freezing the slush on the road. No lane lines could be seen on the road in front of me ~ 18-wheelers and trucks were flying down the highway like it was a dry winter evening. I was a bit annoyed, but not frightened. What's an ice covered highway compared to brain surgery? I thought, as a motored towards the safety of my house ~ surely there would be a fire lit in the fireplace by the time I safely arrived. See what I did there ~ positive thinking ~ transporting me out of the not so comfy place that I was presently.

The exit signs seemed to come into vision at a snails pace ~ shouldn't I be getting closer by now? Just then, I focused on the Exit number sign just ahead ~ only two more exits until I am home ~ but wait ~ a cluster of yellow flashing lights caught my eye as a parade of three plows were entering the highway just a quarter of a mile in front of me. Like leading a charging cavalry, they forged abreast all three lanes on the highway ~ clearing the way for all the cars behind them. Some folks would be completely exasperated if this happened to them on their way home ~ me ~ I was happy to slow down and enjoy the slush free ride to my exit.

I breathed a sigh of relief and knew that I would make it home for certain. Those three snow plows were like brave soldiers leading their people into battle ~ leading the charge must take great strength and courage. All those people are looking up to them to lead, take charge, protect them. Reminds me of a scene from Return of the King when Gandalf rides out with his staff as he thwarts the Nasgul and safely leads his people to the safety of Gondor.

You see ~ all along I was protected by guardians ~ but it wasn't until I saw the lights of the snowplows til I realized I was completely safe from harms way. Who do you turn to when you need a guardian?

Hold On To HOPE!

Skull Design & Root Causes of Neurodegenerative Diseases

(Yeah ~ you've seen that gorgeous skull before ~ it's my very own) I stumbled upon the coolest blog this week ~ It's actually titled:

Alzheimer's, Parkinson's and Multiple Sclerosis, Getting to the Root Causes of Neurodegnerative Diseases

I did a search for Chiari within the blog and found numerous posts. Just glancing through some of the blog posts awakened the researcher in me like Rip Van Winkle after he snoozed way to long!

Here are a few snippets from the blog ~ Seriously, I think I could read the whole blog in one sitting and only grasp one-eighth of the meaning ~ it's deep and scientific and he's talking about us Chiarians ~ very interesting ~ what are your thoughts on the matter?

all humans are predisposed to the brainstem sinking into the foramen magnum due to its location beneath the skull.

Typically, the brainstem is surrounded by cisterns filled with cerebrospinal fluid (CSF) which allows the brain to float above the foramen magnum and base of the skull thus preventing contact with the bones of the base and foramen magnum. In a Chiari malformation, it is typically the tonsillar portion of the cerebellum that gets trapped in the foramen magnum.

the location of the brainstem and cranial nerves in relationship to the base of the skull and foramen magnum. Their location makes them highly susceptible to compression by either an increase or a decrease in CSF volume in the cisterns.

A short length in the base from the front to the back of the cranial vault, predisposes the brain to crowding and a condition called Chiari malformations in which the cerebellum or brainstem gets pushed down into the foramen magnum. Chiari malformations can block both venous blood and cerebrospinal fluid (CSF) pathways causing CCSVI and hydrocephalus type conditions. Chiari malformations used to be considered as a childhood problem for the most part. However, recent studies show that trauma can cause Chiari malformations in adults. What’s more, Chiari malformations have also been associated with multiple sclerosis.

And did I mention all of the pictures and diagrams on the site? Amazing!

Rogue DNA

One of my resolutions for 2011 is to start actively blogging again. I have about 80 drafts of blogs just waiting to be posted ~ many a time I have started with great intentions only to loose my train of thought in mid sentence...

About a year ago I found a website looking for Chiarians for a genetic study. Of course I definitely wanted to be included in the study and inquired as to what was involved. After a long conversation with the study's coordinator I found out that there would be some paperwork inquiring about the medical history of me and my family and a phone interview. Then, there would be a traveling phlebotomist that would eventually be in my area, come to my home and take blood samples from all family members.

Given the chance to contribute to research and science for the chance in finding a cure for Chiari ~ I was beyond thrilled to share my DNA. Although many doctors are in denial, Chiari couldn't possibly be genetic! Where's the proof? ~ WE know that it most certainly is and this genetic study will further prove the connection.

The Genetics of Chiari Type I Malformation is still looking for volunteers ~ you, too, could contribute to science and possibly help us find a cure for CHIARI! I have printed the details below ~ If you have any questions, please feel free to contact me.

Genetics of Chiari Type I Malformation

The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations, with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. At the current time, we are not able to enroll families in which the only diagnosed members are a parent and child. If the family meets these criteria and wants to receive study participation information, please contact the study coordinator at 1-877-825-1694 orchiari@chg.duhs.duke.edu. More information can be found on our website

http://wwwchg.duhs.duke.edu/diseases/chiari.html.