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Live Love Laugh



Learning how to live life with my Brain Tail in tow ~ Detethered on 2/1/08 ~ Decompressed on 12/3/08. Finding humor in the valley of the shadow ~



Updated: 2018-03-14T07:25:33.505-04:00

 



Scientists Identify ‘Big Brain’ Gene in Humans, Neanderthals

2015-05-16T14:39:43.168-04:00

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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

2014-11-06T20:47:42.609-05:00

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.

(image) (image) 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

2014-10-29T21:13:20.792-04:00

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 tro[...]



I Still Have Hope

2014-08-24T22:09:58.542-04:00

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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

2014-08-10T22:15:04.912-04:00

allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/qrOotpSKOX0" width="560">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 CrownsFrom where I'm standingLord, it's so hard for me to seeWhere this is goingAnd where You're leading meI wish I knew howAll my fears and all my questionsAre going to play outIn a world I can't controlWhen I'm lost in the mysteryTo You my future is a memory'Cause You're already thereYou're already thereStanding at the end of my lifeWaiting on the other sideAnd You're already thereYou're already thereFrom where You're standingLord, You see a grand designThat You imaginedWhen You breathed me into lifeAnd all the chaosComes together in Your handsLike a masterpieceOf Your picture-perfect planWhen I'm lost in the mysteryTo You my future is a memoryOne day I'll stand before YouAnd look back on the life I've livedI can't wait to enjoy the viewAnd see how all the pieces fitOne day I'll stand before YouAnd look back on the life I've lived'Cause You're already thereYou're already thereWhen I'm lost in the mysteryTo You my future is a memory'Cause You're already thereYou're already thereStanding at the end of my lifeWaiting on the other sideAnd You're already thereYou're already there[...]



Does FEAR Wake You Up?

2014-10-29T21:27:29.100-04:00


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...
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Defenses Against The Dark Arts

2013-09-02T17:01:30.599-04:00


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

2013-07-27T11:11:38.256-04:00

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?



A Light Shines in the Dark

2013-07-04T16:51:37.461-04:00

I recently took some time out of my busy work week to spend the night at a quiet, remote retreat center. After the sun set and darkness enveloped me I was greeted by a host of busy fireflies. Never in my life have I seen such brilliantly lit creatures. Perhaps they have upgraded their bulbs to LED lights?

Fireflies have always captivated and fascinated me. They have always reminded me of fairies and heavenly spirits. Amazing to me how much light they create and yet they are so small. Since nature speaks to my heart, this is what I found about fireflies showing up in my life ~ May you have some firefly visitors this summer, too.


For those to whom the firefly appears, it is time to trust in your own rhythms--physical and spiritual. Our hopes will begin to manifest, and our ability o inspire will grow. Fireflies remind us that there are others who will respond to us and who are like us. They flash with similar creative rhythms. They will make their presence known soon, and they will make our life more creative and healthier.

Fireflies generate light without heat, a process of chemistry and physics that is still baffling to science. Whereas most electric bulbs waste 97% of their energy in heat, a firefly concentrates 90% of it's effort into light. The glow emerging from so tiny an animal is sufficient to read a printed page, reflecting wonderful opportunities to make the seemingly impossible a reality, inspiring wonders that will be flickering and manifesting around us.

When the firefly appears is a wonderful time to jot down all of those creative ideas that are flickering in our mind through this time. We needn't worry about what to do with them now, for just by taking them out of the mental realm, their creative force is released into our life and they will provide inspiration that will affect us for a long time in the future.


The firefly looks ordinary during the day, but by night they sparkle, flickering like a star. They hold the promise of accomplishing our goals. Spiritual gifts are awakening. We are on the right path, and there are strong spiritual forces around us. When fireflies appear, people begin to reassess their former opinions and perspectives. We begin to shine and sparkle. Opportunities to fulfill dreams, to inspire wonder, and to awaken greater hope will begin to flicker strongly within our life.



Where Do You Put Down Roots?

2014-10-29T21:30:14.887-04:00

Wish I had seen this magnificent tree in person ~ a friend of mine has allowed me to share this image of courage and determination. It's clear to me that this wise old tree is firmly rooted. It began it's life as a sapling  on the banks of a lake and that's where it's stayed. No doubt, this tree has endured torrential downpours and floods, threatening it's life over and over again and yet it's proven to be resilient ~ but at what cost?

Resilience, determination, courage ~ these are all close cousins of one another. When they join hands and work together survival becomes a reality.  How does this relate to me and my life? I've never felt like a physically "rooted" person ~ ever. I've embraced the wonder and adventure of change. But, something I've learned that's essential to survival is knowing yourself and what you are deeply rooted in.

For most people, they are rooted in family, a job, a town or a house. For me, it's been my faith and intuition that have grounded me to the planet.  The aftermath of brain surgery has been a potentially catastrophic uprooting event for me. I've felt like my roots have been ripped out of the ground. Many times I've felt awash at sea, not knowing if I even had any roots left to dig in and hold onto solid ground again. The image above is a gentle reminder that, yes, I still have roots, strong roots that can grip and take hold of solid ground even in the most unlikely circumstances. How do you find your footing again and do you dare to take hold of something you believe in?



Outside the Box

2013-06-08T20:14:53.035-04:00

A picture says a thousand words, right? I've made the photo above my screen saver at work. It's a constant reminder to think outside the box and to look up every once in a while. So many times a day I find myself a victim of brain farts ~ ooo shiny! What was I just thinking about? I had a thought and just like that, poof! It's completely evaporated.

So, like I was saying, I've been thinking way outside the box ~ looking for a unicorn or a zebra in a herd of horses. I saw my most favorite endocrinologist in the world last week and after listening to me rattle off my numerous growing neurological chiari/cranial settling related symptoms, he emphatically told me that I was skating on thin ice. That's always a wake up call when you hear that from someone that you trust in the medical community. ~ sigh ~

After digesting my doctors concerns for my health, I took a deep breath and shared this bizarre, outside of the box idea with him to help validate that my idea wasn't completely off the reservation. I've been thinking lately, most of my symptoms lately: migraines, vertigo, trouble breathing, insomnia... are all related to cranial settling. After seeing my Chiari friends go through fusion surgery only to have the fusion rods re-done just a few years later, I really want no part of that routine. With that said, I vividly remember my Invasive Cervical Traction procedure that I had the day before my brain surgery.

At one point during the procedure, even through the twilight haze, I remember Dr. M discovering that when they lifted my head up and over and then down there was a remarkable change in symptoms and CSF flow. He was very intrigued since he had not seen a positive result before with that set of motions. So, I was thinking, if this procedure helped me to feel pretty good for a few years, why can't I go in for this type of surgical procedure again? Sure, I would miss a few days of work, but it's an outpatient procedure with no recovery time. How crazy would it be to at least start a dialogue with my doctors to see if this is a possibility.

Shockingly enough, my doctor totally was on board with my idea and didn't think it was crazy at all.

I feel like I keep buying time ~ waiting for technology to advance, looking for a less invasive more long lasting solution. I know there's no cure for Chiari ~ but this girl is still searching for a silver lining ~ a sliver of hope....



The Hurt and the Healer

2013-05-19T11:09:34.413-04:00

What a profound message - I'm alive, even though a part of me has died....what a great comfort this message brings allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/mxqfDs-64I0" width="420">The Hurt And The Healer ~ MercyMeWhy?The question that is never far awayBut healing doesn't come from the explainedJesus please don't let this go in vainYou're all I haveAll that remainsSo here I amWhat's left of meWhere glory meets my suffering(Chorus)I'm aliveEven though a part of me has diedYou take my heart and breathe it back to lifeI fall into Your arms open wideWhen the hurt and the healer collideBreatheSometimes I feel it's all that I can doPain so deep that I can hardly moveJust keep my eyes completely fixed on YouLord take hold and pull me throughSo here I amWhat's left of meWhere glory meets my suffering(Chorus)I'm aliveEven though a part of me has diedYou take my heart and breathe it back to lifeI fall into your arms open wideWhen the hurt and the healer collideIt's the moment when humanityIs overcome by majestyWhen grace is ushered in for goodAnd all the scars are understoodWhen mercy takes its rightful placeAnd all these questions fade awayWhen out of weakness we must bowAnd hear You say "It's over now"(Chorus)I'm aliveAnd even though a part of me has diedYou take this heart and breathe it back to lifeI fall into your arms open wideWhen The hurt and the healer collideJesus come and break my fearAwake my heart and take my tearsFind Your glory even hereWhen the hurt and the healer collide Jesus come and break my fearAwake my heart and take my tearsFind Your glory even here When the hurt and the healer collide Jesus come and break my fearAwake my heart and take my tearsFind Your glory even here[...]



Tears

2013-05-13T21:24:52.011-04:00

Tears ~ I've been thinking about them a lot lately. I taught myself at a very tender age of TWO, to try my hardest to stuff my tears way down deep to the pit of my stomach. Hey, I  put on a smile that stretched from ear to ear and that worked for decades!

But once I allowed myself to feel my feelings as they bubbled up to the surface ~ there's no stopping the tears. They show up out of no where ~ on a sunny day when I think everything is right in the world. Recently, for the first time in my life I awakened myself out of a dead sleep to the sound of my own sobbing. We are talking crying so hard I can't stop ~ and I just might need a dry pillowcase cover and a full box of tissues.

I don't know exactly WHY this is happening now ~ but I have to say it gives me a  great sense that I am really alive and I haven't felt that way in a very long time. The most recent occurrence was this morning at 5 am. I remember the dream well ~ it wasn't a particularly emotional dream, but when I felt the e?motion swell within me like a tsunami ~ I could feel the ache in my chest as I tried desperately to hold back the swell of tears ~

When I think about it, most of my most favorite movies and TV shows have tearful moments. I've gotten a lot more comfortable with watching those scenes again and allowing myself to be swept up in the moment and cry alongside the characters.

Here are a few of my favorite tearful scenes ~ What are yours?

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What Grace Has Given Me ~ Let It Pass to Him

2014-10-29T22:33:02.268-04:00

allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/VlEhEw52kBg" width="420">This has been a heart breaking week ~ I've always felt ever since my Chiari diagnosis that it was my burden to bear, my dark forest to walk through . I grew comfortable with that feeling very early on. I felt like a ring bearer myself. I always have known that for me, it's easier to be in pain and struggle than to watch someone else I love go through the same thing. How right I was!My Dad's been in a great deal of pain over the past couple of months. And for him to feel pain this must have been some kind of Jurassic pain from hell. You see, he's got this incredible tolerance to pain ~ luckily he passed that DNA onto me. The trouble with this is that by the time he feels pain, he's in real trouble. He finally went to the doctor and underwent a battery of tests. Well the results are in and they aren't good.Dad's been given a chance to fight like a rabid lion ~ the fight of his life! Cancer has invaded and it's time to kick it the hell out of Dodge! This news has been shocking and earth shattering for all of us, but I know we will get through this. When the call came in ~ I stepped outside my office for a couple of minutes. The sun was shining, the cold air hit my face and I braced myself to hear the 'C' word. My body went numb, I crumpled to the ground in a crouch. While I was listening to Dad dispel this not so good news, a movie scene immediately was rolling through my head ~ and from the Fellowship of the Ring ~ no doubt. Shocked you are, right? This quote was rolling over and over in my head: "What grace has given me, let it pass to him.  Let him be spared.  Save him."What I would do to take this from Dad ~ I feel so helpless ~ I can't stand by and watch ~ I have to do something to help take the pain away...Sending a band of angels to surround you Dad, protect you better than a She Elf of Middle Earth ~ you will beat this ~ I know in my heart that you will ~ love you much!Arwen and Frodo  In Tolkien's novel, Glorfindel's horse Asfaloth bears Frodo alone to the Ford of Bruinen, and Frodo collapses after resisting the will of the Nine Riders.  In Jackson's movie, Arwen bears him across the Ford and is the agent of resistance.  There she speaks Words of Power to make the river rise against the Nine.  Here, Jackson's choices establish Arwen as one of the most potent powers in Middle-earth, capable of employing the same kind of powers that Gandalf and Saruman use at Caradhras.  (In the novel, the flood is the work of Elrond's wielding of one of the three Rings of Power, with flourishes provided by Gandalf.)  Arwen then kneels over the fading Frodo and says, "What grace is given me, let it pass to him.  Let him be spared.  Save him."To whom is Arwen speaking?  What's this "grace" she's talking about?If Jackson holds true to Tolkien's intent, it is the grace extended to Arwen by the Valar (Middle-earth's pantheon) to pass into the Blessed Realm.  As one of the children of Elrond, the Halfelven, she is allowed the choice of leaving Middle-earth to dwell in immortality with the Valar, or to remain in Middle-earth as a mortal and suffer death.  In the eventual passing from the Grey Havens, Frodo takes Arwen's place in paradise.  Arwen's "grace," then, is the gift of immortality.[...]



A Hopeful Sign

2013-01-06T11:39:02.381-05:00

If you've been following my blog ramblings over the past 4 years, you know that music and nature speak to me on profound levels. I've always looking for 'signs' ~ a language that speaks to my heart when words have fallen on deaf ears.New Years Day, we were driving home from spending the night out. We were driving down a highway that I travel on daily. Sitting in the passenger seat, I gazed out the window to my right, looking at how wistful the freshly fallen snow looked as it hung on the tree branches like an Ansel Adams painting. Just then, something, actually two creatures caught my eye. I'm always on the lookout for Red Tailed Hawks, they are common in our region and are easy to spot perched high in a tree along the highways. The white coloring on their chests always gives them away. But these creatures I had spotted were definitely not hawks. They were much larger in size and quite magnificent. I had spotted a couple of Bald Eagles!!! I had heard of sightings, but this was the first time I had seen them. What message was the universe sending me to have spotted TWO Bald Eagles on New Years day....The sky is the limit in 2013 ~ no boundaries ~ no limits ~ soar above it all ~ According to the Native Americans, Bald Eagles have great symbolism:(http://www.whats-your-sign.com/symbolic-eagle-meaning.html)Size does matter to the Native mind. It is the mammoth size of the eagle that, in part, wins its title as the King of the Birds in myth and lore. In spite of its enormous size, the eagle still takes flight, seemingly effortlessly. This is the first of many symbolic cues from the eagle about perception (not judging a book by its cover) and, not allowing the illusion of limitation to ground us in our flight.What else matters when considering symbolic eagle meaning? Here are a few attributes and keywords associated with Eagle Medicine:OpportunityProtectionGuardianshipMasculinityDominanceControlFreedomCommunityCommandActionAuthoritySkillFocusDeterminationVisionPowerLiberationInspirationRulerJudgmentcontemplate the power cased in the heart of the eagle.Synchronize your own heart beat with that of the eagle's - visualize each pulse as a flash of lighting - an impulse of divine thought.Picture the power of the gods clapping like thunder with each flap of their wings. With each crack of thunder consider barriers and blockages in your life being shattered.Then see the great 7 foot wingspan of the eagle growing even longer in your vision in order to swipe away the rubble - making all trace of limitation disappear.Look into the eyes of the eagle, and see the dawning sun shine clarity upon the dawning of your own awareness. These eyes are like a light into your own contemplative vision - let them illuminate your from the inside out.A representation of prime matter, the start of an alchemical operation. The eagle spreads its wings over the step into creation and fans the fire, encouraging growth of new matter.The eagle carries the veil of night and dark over our existence and awareness. It's affiliated with the dawning sun, and is a magnificent celestial power, able to shine light into our world.Associated with the symbolism of water, and the intuitive oracle water serves as. Perhaps because our Celtic kin observed their magnificent ability to see into waters with miraculous clarity. Associated with the Christ himself. Because the eagle seems to easily ascend the skies, looking into the sun with unblinking focus, we relate symbolism of Christ's unblinking faith in the Way, the Truth, and the Light. We also see themes of renewal (baptism) as the eagle plunges the soul of man into the sea, and lifts them out renewed a[...]



Morphine

2013-01-02T21:37:24.310-05:00

New Year's Day a discovery was made while cleaning out cabinets in the kitchen:  an old and tattered paper bag. You see, this wasn't any ordinary bag.  The contents were infused with pain ~ both physical and emotional. There were 6 unopened boxes of liquid Morphine and an opened bottle that was almost full. Additionally, I found a hand-full of hospital bracelets from North Shore Hospital ~ 2008. The expiration dates on the boxes told me to throw them out, but I have a strange attachment to them.How sick and twisted is that!?! I still remember going cold turkey when I got home after my brain surgery. I had a bag of morphine with many refills. I was set for feeling no pain for several weeks if not months if I stretched out my doses. Me, I'm a bit on the stubborn side of life, the docs gave me pain relief, I wanted to get off the high powered drugs and tough it out on my own. I know ~ CRAZY LOCO ~ she is!!!I've never thought of this before, but perhaps I see the unused drugs as a badge of survival ~ a sign that I could recover without any extra assistance from the pharmaceutical companies. Still ~ twisted ~ Did you know that Morphine has been around since 1805. Detoxing from Morphine is just like detoxing from Heroin ~ it's not fun at all! Morphine withdrawal symptoms (or Opiate withdrawal symptoms in general) are as follows: Sweats, Chills, Muscle Aches, Diarrhea, Vomiting/Nausea, High Blood Pressure, Fatigue, Restless Leg Syndrome (leg aches), Insomnia, Severe Depression, Heightened Sensitivity to Pain, Dysphoria, Muscle Spasms, Allergy Symptoms (yawning, watery eyes, sneezing).They generally last for 5-10 days, with some symptoms lasting longer (insomnia, depression, fatigue). Morphine withdrawals are exactly like Heroin withdrawals, because they are almost exactly the same drug. In fact, the proper chemical name for Heroin is Diamorphine. When heroin is ingested and reaches the brain, it is turned into morphine.So back to the conundrum of what to do with an expired bag of Morphine. I know I should get rid of it ~ can i burn it in the fire pit maybe? I think my idea of making Morphine laced martinis for my next Oscar Party might not be a super great idea. There must be some kind of ritual, rite of passage ceremony. Any readers out there share my same feelings or am I the only coo coo one. Don't be shy...[...]



Mending

2012-11-11T10:49:34.561-05:00

You see, ever since that hospital bed, I had wanted to be fixed. Physically, emotionally. And right here, at 29,030 feet, as I staggered those last few steps, I was mending.The spiritual working through the physical. Mending.- Bear Grylls from Mud, Sweat and TearsI recently read Bear Bear Grylls book  Mud, Sweat and Tears.  I've always admired him for his survivor skills demonstrated on his show Man VS Wild, but the book showed me a whole new layer of the real Bear. I already knew a bit about his history/background. I knew that he climbed Mount Everest at age 23, but I didn't know what incredible hurdles he surpassed to get there.You see, Bear was parachuting and his chute failed ~ he ended up hitting the ground on his back and broke his spine ~ narrowly escaping with his life! He was laid up in a hospital for several months, unable to move, not knowing for sure if he would ever walk again. But he had a dream of climbing the tallest mountain in the world. He had pictures of Mount Everest on the wall next to his bed and he focused his mind on the images, knowing that one day he would climb the mountain. The quote I posted really spoke to me on so many levels. I feel like I have been mending for a long time now. No one prepared me for the emotional and spiritual mending that would need to happen after brain surgery. Bear's words have given me new hope ~ a good daily reminder that although I might feel like I am staggering forward, gasping with each breath, each step forward is evidence of mending. One day I will feel mended and whole again...[...]



Transformation

2012-10-16T19:20:06.352-04:00

You must live in the present, launch yourself on every wave, find your eternity in each moment. Henry David Thoreau Saturday was my birthday, I woke up contemplating the beauty of the life cycle. (I know ~ how Thoreau of me.)  I set out for a long walk and was fully aware that this was one of those days when nature would speak to me. How fitting that I would cross paths, twice, with the hairy fellow pictured to the left. When I saw him/her slowly inching across the path I stooped down and moved him over to the grass so that he wouldn't be squashed.  Just the other day I was discussing with a friend how amazing the transformation of a caterpillar to a butterfly is.They crawl around on this earth until it's time to build a cocoon and when they emerge they are completely changed. Transformed into a new being with the 'sky' package that comes fully equipped with wings! When I got done with my walk I looked up the fuzzy creature and was amazed to see what he would look like come springtime! Behold the Tiger Moth. This is what symbolism moths bring: MOTHKeywords: Strong healing abilities. Ability to perceive with clarity. Ability to guide from the dark to the light.Moth’s Wisdom Includes:The power of the whirlwindEase of movement in darkness/shadowTransformationAbility to confuse enemiesAbility to find light in darknessAt the end of my walk I was serenaded by two Red Tailed Hawks who screamed and circled above my head for 5 minutes. I've never understood the power they have on me, but when I hear them cry or see them soaring above me it stirs something deep in my soul. I've often had the urge to stick my arm out as a willing perch for them to land on. Where can I learn the art of tethering? Must put that on my bucket list!Hawk:Hawk teaches visionary power and clear sight with strong observation habits while using patience. He is a sign showing how to ride the winds of change, creativity and the power to surrender oneself to Spirit's guidance. Hawk clarifies reality and reiterates that one is on the correct life path. He aids in truth and illumination, gives a sense of guardianship and watchfulness and reiterates wise and important of opportunities are opening up. His swiftness, wisdom, leadership and strength in actions will guide with honor, integrity with grace and beauty. He will show how to see more in life from a higher perspective of truth. Hawk will show you how to fulfill your soul's purpose. Be ready for a greater intensity to life for Hawk will guide you in the mind, body and spiritual aspects of your journey.[...]



Conquer Chiari ~

2012-09-15T16:08:34.374-04:00

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 2008I 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 2008Just 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

2012-08-18T18:33:37.843-04:00

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

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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

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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....


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Change My Life

2012-08-18T11:55:51.709-04:00

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. allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/_xR0h6FGCBY" width="420"> 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. allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/smoQkJF26C0" width="560">Change My Life ~ Ashes RemainI'm still awake tonightI'm broken up insideI want to runbut I don't know where to goI'm calling Your name through the painwill You turn Your face to me?I'm crying outI need a miracleIf You could make the sun burn through the nightand You could make the dead man come aliveif You could make the oceans all run drythen I know You can change my lifeI know You can change my lifeI wanna know who You are,that You can fix my heartand I don't have to run anymoreopen my eyes, let me seegive me hope and set me free'cause I don't want to be the way I was beforeChorusgive me something to believe insomething worth fighting forsomething that I can't ignoreYou could make the sun burn through the nightYou could make the oceans all run dryChorusI need You to change my lifeI need You to change my life[...]



Do You Hear What I Hear?

2012-07-07T15:36:08.712-04:00

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

2012-06-20T22:44:04.164-04:00

Current Scan 2012vsOriginal scan 9/26/2006According 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

2012-06-10T10:29:37.117-04:00

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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

2012-06-03T12:29:37.273-04:00

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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 ~