Neurological S%#t Storm

It's been a very long time since I last wrote in here. I'd take that as a good sign. I have been busy living my life, daring greatly and manifesting my dream of moving to far away places.

However, I feel compelled to share my vaccine story with hopes that I'll get feed back and hear responses like 'Me too!'. Getting the COVID vaccines was a no brainer decision for me. I want to travel and felt like this was absolutely necessary for safety and good health while abroad. I had heard that if you have a good immune system you will have lots of intense side effects. So, mentally, I was prepared to feel bad for a few days, a small price to pay for COVID immunity. I was not expecting how my body reacted to the vaccine.

I had traveled an hour and a half to get my first vaccine. As soon as they gave me the injection I felt dizzy instantly. I waited the 15 minutes to make sure I wasn't going to have a seizure or go into anaphylactic shock, then drove home. Things were feeling "off" in my my body for sure. Then I developed a giant goose egg sized welt on my forehead and the nausea set in. I had a low grade fever, felt exhausted and then developed a migraine. All "expected" side effects.  This lasted for about a week. 

Then I braced myself for the second vaccine which was supposed to have worse side effects. Surprisingly, I felt a little bit better after the second shot. Nausea and fever didn't kick in for 12 hours. However, for three weeks, I had rolling migraines every 12 to 24 hours, combined with wicked insomnia and intense hot flashes. These migraines were exactly like the ones I had that led to my Chiari diagnosis in 2006. Thankfully, the headache storms passed, but left me thinking what happened in my body when the virus was introduced?

It's clear to me now that my lizard brain - cerebellum - is always on alert. Guarding, protecting me from an intruder who just might cut into my brain again. The warning system is working for sure, but maybe a little too sensitive? I wonder if with time this will settle down some or is it something I will have to get used to.

Did any other decompressed Chiarians out there experience anything like me? 

 

TEN YEARS Post Brain Surgery ~ Reflection

This time ten years ago, 12/3/2008, I was under the knife, just three hours into an eight hour brain surgery. How do you measure a year?

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year? ~ Jonathan Larson

During my early recovery days, each day that passed was a monumental feat! Less pain, more mobility, fewer headaches and vertigo. One breath at a time. Looking back, healing from the pain was the easier part. I never expected the emotional & spiritual fallout that would follow.

I have observed that Medical practices in the USA focus on the physical symptoms as a measuring stick of healing progress. Less pain and an increase in quality of life = successful surgery. I agree only slightly with this statement. My recovery was/is more complex than just the physical. Before I take a hard left turn, I do want to share with you how I am doing physically post decompression. I still get migraines from time to time, I am a living barometer and sensitive to low/high barometric swings in the weather.  My sleeping has gotten better, but I am still plagued by some sleepless nights. (Don't get me started on what theories I have to explain missing time during the night that shows up on my Fitbit).  However, my quality of life has greatly improved and my hope has been restored in knowing I will have a long and happy life.

Now for the dark side of my journey...my life has been shaken up like an earthquake since 2008.

There is no doubt in my mind that I was "re-booted", awakened, during brain surgery. I came back a different version of me. I can't say that this happens to all brain surgery patients, but it absolutely happened to me. No one warned me that this was a possibility. There's was  no way to guard against it even if I knew what was going to happen. In the wake of this knowing, I did the only thing I could do, move forward and don't look back.

For a long while, I was angry at God for letting me survive brain surgery, only to have my life as I knew it figuratively burn to the ground til there was a pile of smoldering ashes left.  I know now, this transformation had to happen so that I could embrace what was in store for me just up the road.

2018 had been a momentous year. My Daddy lost his fight with cancer in May and moved into another realm. This has stirred up an unexpected review of my life. It's been painful to sit with such heavy grief that comes with losing a father, but it's also given me a renewed joy for life.

I am so very thankful for my life post braintail surgery. If I could go back in time, I wouldn't change a thing. Brain surgery was the wake up call I needed to fully embrace and discover what my purpose is during my lifetime here on the planet.

Scientists Identify ‘Big Brain’ Gene in Humans, Neanderthals

http://www.sci-news.com/genetics/science-arhgap11b-big-brain-gene-humans-neanderthals-02547.html

This stuff is mind blowing, especially since I've been fascinated with Neanderthals ever since I got my DNA results back from 23 and me.

WE are all evolving, ever changing beings. We are composed of bone, soft tissue and fluids. Don't you think there must be a correlation between genetics and mutations that might explain how Chiari and Ehlers Danlos Syndrome came to be?

I'm wondering about other Chiarians out there ~ have you had your DNA tested? And if so, do you know what percent Neanderthal DNA you have? When I hear hoof-beats, I always think Zebras.... The Truth is Out there ~ anyone else have any far fetched ideas about this? Discuss....

Tacking

The shortest distance between two points is a straight line ~ but that's not always the path I've chosen. Tonight I've been reflecting and looking back at the path I've blazed over the past two years that's brought me to the here and now. I glance back ~ and OMG ~ what a zig zaggy path from hell I've taken. To the untrained eye it might look like complete random chaos. More like the path a rabid squirrel on crack would take ~ but I digress.

I love the water and there's no better way to spend time on the water than on a sailboat. Since learning how to sail a Sunfish at Camp Longhorn  (Heaven on Earth) ~ the art of tacking has always made me ponder. The task of going back and forth across the lake so that you catch the wind at just the right angle is fun and challenging. Sailing takes time, you are at the mercy of the wind and your tacking skills. Spending a day on the lake is a journey not a sprint.

Stay with me, I'm getting to my point...

I guess what I am trying to say is that all the detours and the seemingly unnecessary pit stops along the way in the my life are making sense now. Of course I had to zig-zag my way through the rough waters. There was no other way.

Each destination had a profound purpose, even if I couldn't see it or understand why at the time. Now the picture is becoming more clear and I can see how the parts fit together to make me more complete.

My words of encouragement to you are to hang in there when you feel frustration with how slow your journey is going. There's a whole lot of LIFE between knowing where you want to go and the journey that takes you there.

I AM A SURVIVOR

Nothing like a HTML redirect script error to remind me that I need to spend some more time blogging ~ I've been thinking a lot lately about returning and there's no perfect time like the present.

Living day to day as a brain surgery survivor can sometimes feel like a heavy burden, especially so as I creep closer to my SIX year post surgery date on December 3rd. I thought for sure I would cherish every day after surviving being a breath away from dying. Sure, some days I am thankful for being alive ~ happy for the days when I'm not battling an epic headache or trying to maintain composure and balance on a vertigo infused day. But mostly, I've gotten on with my life ~ trying to fit in and fool myself into thinking I'm normal. Then the reality check hits me ~ YOU ARE A SURVIVOR ~ YOU ARE ANYTHING BUT NORMAL! Live it ~ feel it ~ soak it up ~ then get started on your bucket list and sharing your story.

I'd like to think that I'm one of the few lucky ones who has been able to get on with my life. I've heard countless stories of other Chiarians who can't get out of bed every day  ~  live their lives a slave to pain and medications ~ have countless surgeries only to feel worse and not better for their pain and suffering.  There must be something I can do to speed along the genetic testing process to finally find a cure for Chiari. If the mutant genes can be located it would speed up the agonizing slow pace of finding a cure.

I read this week that the cause of ALS has been found ~ wouldn't it be miraculous if the same amount of research was being done to find the cause of Chiari Malformations? I don't know what the statistics are for Chiari related deaths annually, but I am hearing more and more stories of Chiarians dying post surgery. Take this for example:

Sudden unexpected nocturnal death in Chiari type 1 malformation and potential role of opioid analgesics

Abstract

Background: Chiari malformation type 1 (CM1) is a common congenital anomaly of the craniocervical junction. CM1 is reported to run a usually benign course and patients typically experience no symptoms or chronic, slowly progressive symptoms. However, recent reports indicate that a subset of patients with CM1 may present with acute deterioration and sudden unexpected death (SUD). We report a case of SUD during sleep in a young man with CM1, which we believe was related to the administration of common and therapeutic doses of narcotic analgesics for the management of pain. We will clarify the pathophysiology of acute deterioration and SUD in CM1 and the possibility that the adverse effects of opiate analgesics likely were the leading cause of death in our patient.
Case Description: In this review, we present a 29-year-old male with worsening headache secondary to previously diagnosed CM1. The patient died suddenly and unexpectedly after administration of common and therapeutic doses of narcotic analgesics for the management of pain. 

Conclusion: The mechanism(s) of acute neurological deterioration and sudden death in patients with CM1 remains poorly understood. We believe the rapid fatal deterioration in our patient following administration of opioids suggests that this category of medication may cause sudden unexpected "neurogenic" cardiac death in CM1 patients by inducing sleep-related breathing difficulties and associated hypercapnia. Hypercapnia by further increasing intracranial pressure can result in a sudden pressure-induced decompensation of the cardiopulmonary control centers in the brain stem and cause instantaneous cardiorespiratory arrest.

 This is serious stuff and yet this is the first time I've even seen the term hypercarpnia. Probably not a coincidence at all that when I was a teenager my general practitioner told me that I had too much carbon monoxide in my blood. He told me to breathe more ~ WHAT? Really? I just thought I was a stressed out teen prone to panic attacks. Now I'm thinking the signs were there all along. I've always had trouble remembering to breathe. I SIGH heavily and frequently ~ not due to boredom, I just need more O2 in my system due to holding my breath subconsciously for too long between breaths. So who's tasked with studying chiarians who don't breathe enough?

What about this theory of mine ~ I recently found out that I have measurable Neanderthal DNA.

I can't be the only one who's looked at how different Neanderthal cranial vaults looked compared with modern humans. We are all evolving as the generations pass along DNA from the previous generation. A common phrase heard in the Chiari community is:

My Brain's Too Big For My Head!

 or

 Too Much Brain To Contain

Soft tissues change quicker than bone ~ do the math ~ connect the dots. Just saying ~ there are answers out there.

I could go on for hours ~ but I'll save it for another post. Glad to be blogging again even if it's just for me. My hope is that I've lit a spark in just one of you out there to look into your medical background and dig. The answers are there ~ we just need to figure out who to share these ideas with so that someone with a brain can find a way to shut off that lethal mutating Chiari gene.

I Still Have Hope

I have no explanation ~ why and how can I have a shred of hope left after the week I've had. My brain tail continues to try and kick my ass and now Vertigo is back for an extended stay ~ completely uninvited ~ all I can do is continue to press through it all ~ One Day At A Time. I am sure there are many of you out there in various places in your chiari journey and this might not be the best of news you might want to read ~ but it's the truth. Dealing with Chiari is a life long process ~ but something I am learning more and more is to take better care of myself and give myself down time when my body is screaming for rest. IF I don't listen ~ I pay the price. This morning I had to surrender to vertigo and was grounded on the floor of my bathroom for a few hours as I tried to draw some strength from my reserves so that I could go spend some time reconnecting with a local Chiari friend. We all need love and support of other chiarians who understand how it feels to be a brain surgery survivor and a struggling chiarian. These connections give us strength and HOPE.

To You my future is a memory

I heard this song last week and it really spoke to me ~ gave me renewed perspective. I've been off line for a while in the blog world and hope to be writing again. I've really had to dig deep and sort a lot of things out in my life. I am shocked and amazed at all the trials that get thrown into my life path ~ but with one breath at a time I keep moving through it with high hopes of healing.

Already There ~ Casting Crowns

From where I'm standing

Lord, it's so hard for me to see

Where this is going

And where You're leading me

I wish I knew how

All my fears and all my questions

Are going to play out

In a world I can't control

When I'm lost in the mystery

To You my future is a memory

'Cause You're already there

You're already there

Standing at the end of my life

Waiting on the other side

And You're already there

You're already there

From where You're standing

Lord, You see a grand design

That You imagined

When You breathed me into life

And all the chaos

Comes together in Your hands

Like a masterpiece

Of Your picture-perfect plan

When I'm lost in the mystery

To You my future is a memory

One day I'll stand before You

And look back on the life I've lived

I can't wait to enjoy the view

And see how all the pieces fit

One day I'll stand before You

And look back on the life I've lived

'Cause You're already there

You're already there

When I'm lost in the mystery

To You my future is a memory

'Cause You're already there

You're already there

Standing at the end of my life

Waiting on the other side

And You're already there

You're already there

Does FEAR Wake You Up?

FEAR seems to be a word that continues to reverberate in mind. Although I haven't shared much here lately about the complete change and upheaval that I'm going through in my life right now ~ believe me when I say that I come face to face with FEAR several times a day. But the funny thing is, FEAR is no longer FEARED ~ if that makes any sense to you.

Instead of a menacing, skulky foe ~ FEAR has become a beacon to me ~ signaling me to WAKE UP ~ this is yet another opportunity to become stronger ~ to become more REAL ~ to change a behavior that no longer fits in my life. FEAR is a wise teacher if you can take a deep breath and let it wash over you. This is NO easy task.

I saw DIVERGENT this weekend ~ I read the book at least a year ago so all the details of the story weren't fresh in my mind. Again and again throughout the film I got the chills from my head all the way down to my toes. Memories were stirred from many years ago ~ over and over again like a long lost friend. Brave, primal, dauntless, memories. I sooo identify with the character Tris.

"Who's going to jump first?" ~ "I will!"

Growing up in TEXAS, I had many opportunities to face FEAR and test my BRAVERY. I went rappelling, zinged down zip lines, when cliff jumping ~ At the time I'm not sure if I did it because I was chasing that adrenaline high or if I was eager to squash FEAR before it could manipulate me. Nevertheless, FEAR in one form or another has shaped and molded me into the woman I am today and I will be forever grateful for my menacing companion.

My question for you, dear reader, how will FEAR define you? Will you cross over the line from letting FEAR control you to seeing FEAR as an ally? Let the fear in for FIVE seconds and see what happens...

Defenses Against The Dark Arts

Texas skies ~ I think miles and miles of blue skies covered with billowy clouds ~ or beautiful sunsets painted with brilliant pinks, oranges and reds. This photo was taken by my Mom shortly after touching down on Texas soil. Hauntingly beautiful it is. Enveloped me completely ~really. 

I don't know how to explain it but the color BLUE has been coming up more and more in my life. Blue reminds me of water and sky ~ this blue is very inky and seems to hold many treasured secrets. Reminds me of a section in Brene Brown's book ~ Daring Greatly ~ If you want to read the whole piece ~ click on this link ~ otherwise ~ here's my favorite passages about shame and Harry Potter:

 Sirius told Harry to listen to him very carefully, then he said, 

 ‘You’re not a bad person. You’re a very good person who bad things have happened to. Besides, the world isn't split into good people and Death Eaters. We've all got both light and dark inside us. What matters is the part we choose to act on. That’s who we really are.’”

“We all have shame. We all have good and bad, dark and light, inside of us. But if we don’t come to terms with our shame, our struggles, we start believing that there’s something wrong with us – that we’re bad, flawed, not good enough – and even worse, we start acting on those beliefs. If we want to be fully engaged, to be connected, we have to be vulnerable. In order to be vulnerable, we need to develop resilience to shame.”

Reading this was a good wake up call for me to embrace the dark and the light ~ they are both a part of who we are ~ what do the dark, inky night skies tell you?

Insightful Dino

I had to take a picture of this display at Barnes and Noble ~ so perfect and true! Has it only been a few months since the end of  Game of Thrones ~ Season 3?