10,000 Miles

What is it about this song that is so mournful and bittersweet ~ this melody expresses my mood today as I remember my brother, Trey's, birthday. Sneaks up on me every year. You know, I don't actually even recall one memory of one of Trey's birthdays ~ but I do vividly remember the way it felt when he wrapped his arms around me and hugged me like he was never going to let go. So many years have passed since his passing and yet it still feels like he's just gone for a while ~ I know we will be together again, one day.

First Encounter Sunset

For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

Jeremiah 29:11-13

I took this picture a couple of years ago while on the First Encounter beach at sunset ~ I am in awe of the sunsets that our creator paints for us! What a gentle reminder to keep making plans for the future ~ as long as I am breathing and still on this planet I know that He has plans for me ~

Keeping the Faith

I am reading Dan Brown's Angels and Demons and I just came across a brilliantly written paragraph about terror. In light of the TCI ongoing investigation this really hit home and explains the ripple effect of terror.

"'Terrorism', the professor had lectured, 'has a singular goal. What is it?' ...'To cause terror?'
'Concisely put. Quite simply, the goal of terrorism is to create terror and fear. Fear undermines faith in the establishment. It weakens the enemy from within...causing unrest in the masses. Write this down. Terrorism is not an expression of rage. Terrorism is a political weapon. Remove a government's facade of infallibility, and you remove it's people's faith.' Loss of faith..."

Life continues to teach me many hard lessons ~ some numerous times ~ life is hard ~ the good guys don't always win ~ nothing is fair ~ pain comes from living a full life ~ there is good and evil in all situations. I thought that maybe after surviving brain surgery that I would be exempt from anymore hardships ~ clearly I had a delusional moment ~ but it's OK ~ I still have a lot of living to do and a lot to learn.

This post might seem a little cryptic, but I am sorting out something in my head. I have really had to sit and simmer for a while ~ remove myself from an emotional tornado ~ the mama bear in me wants to spring forth and play the protector. Faith has been completely shattered for many and getting that trust back is a slow and long process. I am so thankful that I am where I am in my chiari journey so that I have a clarity that comes from stepping out in faith and entrusting my life to brilliant neurosurgeons.

~Sigh~ How do I find the strength to continue to do my part to infuse the chiari community with a renewed hope and faith in surgeons who heal? One breath at a time ~ one baby step at a time. Living with Chiari is a moment by moment struggle ~ a lifelong battle ~ but there is so much more to life than living and dying. As long as I am breathing I will continue to encourage those of you who need someone to cheer you along in your journey ~ you are never alone! Finding joy and a peace that passes all understanding ~

If You Want Me To - Ginny Owens

Medium

Medium is one of my favorite shows ~ last night's season finale really got my attention when the episode focused on Allison's deteriorating mental/physical health. **SPOILER ALERT** Allison collapsed at the office one day and when they ran some tests on her they found a rapidly growing tumor on her brain stem. Ooo MRI's of Allison's brain ~ I perked right up straining to see if she has a brain tail. Do any other loyal viewers out there remember a Medium episode early on in the series where it was found that Allison and all three of her girls share the same type of brain malformation? It's been driving me nuts, because I can't recall what they found but my hunch is it has something to do with chiari.

Anyway ~ the doctor was discussing surgical options with Allison and her prognosis with the newly found tumor in her brain. They must operate immediately as the tumor was growing fast and if they didn't operate and take it out it would cause her brain to herniate ~ GASP! The doctor went on to explain the urgency of the need for surgery as herniation of the brain can cause paralysis even death! GASP again ~ I wish I had found her doc when I was diagnosed with my brain tail. It seems that the local docs don't think a brain herniation of 17mm is anything that serious!

Here's a question for you brain tails out there ~ has having a brain tail made you more extra sensitive to things that are unseen ~ thoughts that are not spoken? I completely identify with Allison from Medium ~ not to that degree, but it can really make me feel like I am not from this planet sometimes. Maybe it's the hernation or the extra room now in the back of my head that makes me more sensitive ~ thoughts ~ anyone?

What A Package Deal: Faith, Hope, Wisdom and Courage ~

A month ago, I had a bucket full of iris bulbs in my garage that have traveled all the way from Texas to New York. The story behind the traveling bulbs is that they were originally dug up out of the ground at a family property in the Texas Hill Country back in the early 1970s. Since then they have been planted ~ dug up ~ stored ~ transplanted ~ and so the cycle repeats over and over again with each move. So here we are in 2009 and I just put the bulbs in the ground. They have been sitting in our garage for almost THREE years ~ since we moved I just haven't gotten around to transplanting them ~ and finally I can check them off my list.

I always thought that the spring time wasn't the greatest time to put bulbs in the ground, but I knew if I waited much longer, I would blink and another year would have flown by. I also was not expecting any blooms this year as I thought the blooms had to sit in the ground a year before producing blooms ~ guess I was wrong! You can imagine my surprise when I noticed just the other day that we have a couple of deep purple blooms peeking out ~ just waiting to burst forth with breathtaking blooms.

Since nature always seems to be speaking to me I looked up the meaning of the Iris flower and was reassured that certainly their symbolism speaks louder than words. The iris is associated with faith, hope, wisdom and courage. I'll take two helpings of that!

There's Some Good In this World Worth Fighting For

Yesterday there was a public announcement that Dr. Bolognese ~ neurosurgeon extraordinaire has been reinstated to resume business as usual again ~ This is great news for the Chiari community. I have seen every spectrum of emotions just flooding out of bloggers across the community ~ anger, rage, fear, hopeless, dread, panic ~ I can't tell you how many of you I have talked down from the bridge ~ urging you to keep the faith in TCI ~ lean on the facts and not the feelings. Dr. B is a groundbreaking, incredible doctor ~ those are the facts ~ he has restored my health to 90% and I am forever grateful :)

Something I have learned as a brain surgery survivor and as a chiarian is that when all hope fades and all you can see is darkness enveloping you, this is when faith steps in and shines a light in those dark places. I think we all can stop holding out breaths and breathe a deep sigh of relief. I had my post op f/u appointment today at TCI ~ I have news. but more on that in another post. Just a reminder that no matter what life continues to throw me, there's always something good in this world worth fighting for ~ looking for more brighter days.

Frodo: I can't do this, Sam.

Sam: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.

Frodo: What are we holding onto, Sam?

Sam: That there's some good in this world, Mr. Frodo... and it's worth fighting for.

Leeland-Brighter Days Lyrics

Time keeps moving on
Through the sunshine and the storm
And my dreams are set in stone
And someday I’ll be who I want to be
For now I’ll wait
For the sun to shine again
And for now I’ll wait
For the rain to pass away

And I’m looking for the brighter days
When all my hurts seem to fade away
I’m looking for the brighter days to come my way

Faces come and faces go
But none seem to look my way
And walls have stood and walls have fallen
But my heart seems to wait
For now I’ll sit at the end of the road
And for now I’ll wait
At the end of the pathway

I’ll see the sun one day shine upon me
I’ll see the sun one day
And watch the night time turn to morning
But for now it all comes back around

Brain Tail Whisperer

I was so sad and sick to my stomach today as the scathing accusations ripped the headlines. I won't dignify the press here, you can find the articles on the Internet ~ but I feel as a loyal patient of Dr. B and Dr. M, I must say something.

The facts are that my incredible neurosurgeons (Brain Tail Whisperers) were recently suspended for two weeks due to a scheduling mishap with the hospital. I am still hoping that the real story will eventually come out, but my brain tail tells me that there was a family emergency and the powers that be didn't get the message to cancel a surgery. Let's face it ~ communication breakdowns happen ~ it's part of life. Recently there was a HUGE miscommunication that resulted in panic in NYC when Air Force One flew over Manhattan for a photo op and forgot to tell the Mayor of NY! It's unfortunate that this happened, but seriously, I have been a patient at North Shore Hospital three times and it's a zoo over there. My docs perform two surgeries a day ~ five days a week. I know they are way over worked and must be completely exhausted! The bright side of this is that they got a well deserved vacation!

I seriously doubt that any of the reporters or the lawyer who is filing lawsuits has ever met Dr. B in person. My Chiari journey has involved 4 local neurosurgeons. Two of which I adore and they referred me to TCI as I was a complicated case and way out of their league. The other two told me to my face that the good docs at TCI were making diagnosis up! When it comes down to it, I have leaned on faith and what my heart has told me where I should be treated.

When I had my initial consult at TCI in May of 2007 a surgery plan was proposed that involved a spinal detethering followed by a posterior fossa decompression and fusion. I was told by Dr. B that the decompression surgery was brutal and would be a long and painful recovery. He said that when surgery looked better than living with my symptoms, then I would know when to have the procedure done.

On 2/1/08 I had my spinal detethering surgery ~ remember this was only diagnosed by TCI. They had explained that my spinal cord was tethered and responsible for causing my chiari malformation. The constant downward pulling of my brainstem had caused all kinds of horrible side effects. I was willing to believe in the unseen and put my faith in my surgeons. When I came to after my detethering Dr. M stopped by the recovery room ~ held my hand ~ looked me in the eye and told me that I was incredibly tethered. He wanted me to cancel my brain surgery that was scheduled for the next month as he was certain that the detethering would reduce my brain herniation.

After the detethering, my symptoms were greatly improved, no more gait problems, my constant nausea was gone ~ but truth be known, my brain tail measured at 17mm ~ it was going to take an act of God to make me feel up to 100% again. I scheduled my decompression for 12/3/08 as it seemed evident that my brain definitely needed more room. I wasn't disappointed that the detethering didn't 'fix' me ~ I understood the complexity of my case. I couldn't continue to live with the constant swirling vertigo, brain fog, trouble swallowing, trouble breathing. I know that my docs at TCI are not super heroes ~ although they come pretty close in my book. The day before my decompression I found out that between Feb and Dec 2008 my brain tail had shrunk from 17mm to 10mm due to my detethering! The surgery absolutely improved my condition.

I know I have rambled on, but I am almost finished ~ So I had my brain tail decompression done on 12/3/08 and I am so thankful that I was decompressed. Sure, I have Chiari pressure headaches on a rainy day, but compared to how I felt prior to surgery I would say I am close to 95% now! TCI takes patients who have no where to turn ~ patients turned away from other surgeons who claim they need to be locked in a padded room as all their symptoms can't possibly be related to Chiari! Their bedside manner is incredible ~ how many neurosurgeons do you know that will hold your hand, look you in the eye and put your fears to rest?

I could go on for another hour, but the point I am trying to make is ~ please don't lose faith in TCI. Please don't be quick to judge before all the facts are in. These are good, hard working, caring surgeons who have saved thousands of people! They need our support now more than ever. This too will pass ~ take the higher road with me ~ I still believe.

Our Lil Maple Tree

Last year we adopted a pair of maple trees ~ or maybe I should say that they were the targets of a rescue mission operation. They were living in a vastly overpopulated grove of trees and by transplanting them to our yard we gave them a second chance at starting over again with a longer life expectancy. Needless to say I have been watching the trees closely to see if they would survive their first NY winter without the protection of other larger trees around them. 

Letting mother nature take it's course has been difficult for me. I kept wanting to cover up the trees to shelter them from the harsh winter ice and snow storms. With each passing winter day I kept preparing myself to see one or both of the sappling broken in two or uprooted ~ but thankfully this never happened. Now that spring is here I waited with great expectation to see which tree would grow leaves first. 

One of the trees I am more attached to ~ you see ~ this particular tree is about a foot shorter than the other one. Maybe she's the runt of the forest. Regardless of her size, she sprouted leaves before the taller, healthier looking tree! She's a fighter for sure and this has reminded me that just because the outside might look smaller it doesn't indicate that everything is going according to plan on the inside ~ sigh ~ Do you hear a parable coming????

Working out in the backyard this weekend I was reminded that weeds grow like crazy as soon as the weather is warmer and they will completely destroy any healthy plants in their path. I spent about two hours on my hands and knees uprooting dandelions. I was so focused on the task at hand that I forgot to put on gloves. About an hour later, the seering pain in the palm of my hand nudged me to go ahead and put on the gloves to avoid further blistering! Whenever I choose to purge something unhealthy out of my life, whatever I am removing will fight back with the power of a thousand lions. Duly noted!

So back to the parable of my favorite maple tree ~ she needs a strong, hearty name, don't you think? Perhaps Eowen ~ As I look back over my Chiari journey I have often felt a bit like the tree weathering harsh weather. No one else has been able to 'share the load' ~ shout out to Samwise Gamgee ~ This path that I have endured is mine alone and my burden to bear. Although I have many supportive friends out there ~ especially you fellow 'brain tails' ~ it's up to me to stand tall, press on and encourage others who are somewhere along the winding road on their Chiari journey. 

The absence of me in the blogging world hasn't been because my symptoms have returned. Truth be known I am feeling really great and only have an occasional pressure Chiari headache, but compared to all the symptoms I had prior to brain surgery ~ I have nothing to complain about. I still feel like I am coming out of a very long coma ~ seeing life through new eyes again ~ remembering what it feels like to feel alive again. For those of you Chiarian's out there who are paralyzed with fear with even the thought of brain surgery ~ know that from my perspective, the surgery absolutely works. My quality of life has been restored to almost 95%. There is always hope ~ dig deep and find your courage and draw strength from those of us who have gone before you.

Always Looking Up

Last week I DVR'd an Oprah episode when Michael J Fox was the guest. Today I finally got around to watching it and wasn't prepared for the profound effect the show had on me. It's been a rough couple of days. The sky has been dense with grey clouds and the rain and some snow flakes have been falling. As a chiarian these weather conditions can cause those lovely barometric pressure headaches from hell, not to mention the feeling that an elephant has camped out on my chest making it difficult to breathe. On top of it all I have been hunkered down in my study bunker trying to cram for my SQL 2005 test that I took yesterday. I passed the multiple choice ~ 35 question section that I have been studying for, but I totally failed the application part of the test that I had no idea existed! Needless to say I was feeling defeated and disappointed yesterday. All that studying and I have to take the whole thing all over again ~ sigh
Anyway, while I was sulking around last night I was thinking about the aftermath of my brain surgery. I do survival mode really well ~ I know my path and I slog through it. But what now? After brain surgery there isn't anything anything harder in life ~ right? Wrong ~ I am learning that my perspective on things have totally changed post surgery. I can't even begin to explain it yet ~ maybe it's a feeling I have deep down in my heart ~ like I need to be doing something profound ~ making a difference. But honestly, I just don't have the energy yet ~ I am getting there, but slower than I would like. That brings me to the point I was trying to make all along.

I have always been a big Michael J Fox fan ~ ever since Family Ties. How could you not love the guy?! Remember Back to the Future (the flux capacitor is fluxxing) and Secret of My Success? Classic movies of the 80's. Fox was diagnosed with Parkinson's Disease about 18 years ago. I have kept up with his condition and I am amazed at how he has continued to live his life despite all of the odds stacked against him. Oprah's interview with Fox was inspiring to say the least.

When my Chiari symptoms were at their worst I thought I just couldn't continue to live with the constant tilt-a-whirl effect of vertigo and the crushing headaches. Then I hear Michael talk about feeling like he's got a four year old constantly tugging on him ~ pulling his body in every direction. I can't even to begin to imagine how difficult his struggle must be ~ but he does it and is making a difference in this world by raising awareness and helping to find a cure.

I saw a quick one minute promo for the special and was intrigued by the fact that Michael's symptoms were lessened when he was in the high altitude of the Himalayas. Sounds like my intuition about going to Everest just might be more than a passionate desire! Again, I am inspired by Fox's great positive attitude, proof that even when you can't change your circumstance, you can choose to be positive. Adventures of an Incurable Optimist is on May 7th, 10pm on ABC. ~ put it on your calendar and watch with hopes that you just might find a glimmer of hope and renewed faith. too. Thanks to Michael for awakening my blogging muse who has been slumbering for way too long!

Barometric Pressure Headaches ~ still

They say it takes about a year to be healed from a brain decompression and here I am thinking I feel pretty good so I must be healed already ~ until I get whacked with the stealth barometric headaches again. My surgical report did state that I had absolutely no flow at all in my 4th ventricle prior to surgery. The decompression restored the flow to that of the 'jet stream', but I wonder how much time I must wait until the pressure headaches are gone. Maybe I will always be plagued by them due to too much damage from 38 years of ventricle squashing in my brain?!

I was reading up on what causes these pressure headaches. I must fall into the category of 'weather sensitive' individuals. There is a feature on http://www.weather.com/ where you put in your zip code and it will tell you on a scale of 1-10 what the Aches and Pains index will be for the area where you live. They are predicting a 6 for today and a 7 for next Monday. This might be a good idea to keep track of when planning activities for the week ~ to not expect much when the numbers creep above 5. But then again, I usually can tell at least 24 hours before the pressure is coming.

Maybe those ancient memories ingrained in my DNA about sailing across the ocean serve me well. I would have been be very handy on a ship since I can tell if there's bad weather coming ~ sigh. Now where's my Excedrine Migraine medicine?!!