Names have been erased to protect the innocent (you can click on the letter to zoom) ~ but I just had to share the letter by 2nd opinion neurosurgeon ~ what a compassionate man! I submitted my all important two letters of recommendation for surgeries at TCI today ~ now I have to wait and see what the medical director decides ~ it's out of my hands for today.
I am overwhelmed by the letter my Dr. has written for me ~ it oozes with compassion, he cares and wants the best care for me ASAP if not sooner.
If I could offer you only one tip for the future, sunscreen would be it. The long-term benefits of sunscreen have been proved by scientists, whereas the rest of my advice has no basis more reliable than my own meandering experience. I will dispense this advice now.
Enjoy the power and beauty of your youth. Oh, never mind. You will not understand the power and beauty of your youth until they've faded. But trust me, in 20 years, you'll look back at photos of yourself and recall in a way you can't grasp now how much possibility lay before you and how fabulous you really looked. You are not as fat as you imagine.
Don't worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 pm on some idle Tuesday. Do one thing every day that scares you.
Sing.
Don't be reckless with other people's hearts. Don't put up with people who are reckless with yours.
Floss.
Don't waste your time on jealousy. Sometimes you're ahead, sometimes you're behind. The race is long and, in the end, it's only with yourself. Remember compliments you receive. Forget the insults. If you succeed in doing this, tell me how. Keep your old love letters. Throw away your old bank statements.
Stretch.
Don't feel guilty if you don't know what you want to do with your life. The most interesting people I know didn't know at 22 what they wanted to do with their lives. Some of the most interesting 40-year- olds I know still don't. Get plenty of calcium. Be kind to your knees. You'll miss them when they're gone. Maybe you'll marry, maybe you won't. Maybe you'll have children, maybe you won't. Maybe you'll divorce at 40, maybe you'll dance the funky chicken on your 75th wedding anniversary. Whatever you do, don't congratulate yourself too much, or berate yourself either. Your choices are half chance. So are everybody else's.
Enjoy your body. Use it every way you can. Don't' be afraid of it or of what other people think of it. It's the greatest instrument you'll ever own.
Dance, even if you have nowhere to do it but your living room.
Read the directions, even if you don't follow them.
Do not read beauty magazines. They will only make you feel ugly.
Get to know your parents. You never know when they'll be gone for good. Be nice to your siblings. They're your best link to your past and the people most likely to stick with you in the future.
Understand that friends come and go, but with a precious few you should hold on. Work hard to bridge the gaps in geography and lifestyle, because the older you get, the more you need the people who knew you when you were young.
Live in New York City once, but leave before it makes you hard. Live in Northern California once, but leave before it makes you soft. Travel.
Accept certain inalienable truths. Prices will rise. Politicians will philander. You, too will get old. And when you do, you'll fantasize that when you were young, prices were reasonable, politicians were noble, and children respected their elders.
Respect your elders.
Don't expect anyone else to support you. Maybe you have a trust fund. Maybe you'll have a wealthy spouse. But you never know when either one might run out.
Don't mess too much with your hair or by the time you're 40 it will Look 85. Be careful whose advice you buy, but be patient with those who supply it. Advice is a form of nostalgia. Dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it's worth.
Tex Robertson 1909-2007 ~ passed away yesterday. I just got word of his passing late this afternoon. I am awestruck by the outpouring of love to Tex and his family that he has left behind. The man has touched millions of lives and made them smile. I am thankful that his passing happened after all of the camp terms were complete ~ what a blessing. There is a memorial service for Tex being held at Camp Longhorn this Saturday afternoon ~ if I didn't live so far away I would be there in a heartbeat. The gathering will be of thousands ~ I am sure ~ for just the population of campers, counselors and alumni alone could fill up Inks Lake Camp.
I posted earlier in the year a post about Camp Longhorn ~ without camp I would be a completely different person ~ seriously. Tex Robertson set the tone for camp more than 65 years ago (1939)~ celebrate life ~ today is a great day and I feel great! ~ life is punny ~ a positive attitude is contagious ~ friends made at camp are friends for life ~ make the best of every situation life throws you ~ Camp Longhorn is a timeless place ~ a place where everybody is somebody ~ a place I call home.
Tex has given so much of himself to the campers and counselors at CLH ~ he knew each and every one of us by name. I will remember him forever ~ especially the time he came to campfire as Dr. Schwartz ~ he drove the station wagon right into the campfire stage ~ then proceeded to get bitten several times by the snakes he was handling ~ he was bleeding all over the place but didn't even notice because he was having so much fun. Tex, may your joy and zeal for life carry on in those whose lives you touched. We will miss you ~
Associated Press quoted Governor Rick Perry as saying: "Tex Robertson was a Texas original whose personal integrity and commitment to children touched countless lives. His legacy will live on in the hearts of thousands of campers and counsellors who were forever impacted by their time at Camp Longhorn."
"... making friends for the world to see...if your friends are there everything is all right.."
Do you ever feel like you are stuck in the middle ~ between the now and the not yet? I am there ~ waiting for a surge of forces larger than myself to push me into the next phase of my journey. How long can I bravely walk through the shadow of the valley ~ my strength ~ both physical and emotional ~ are waning.
I know ~ I shouldn't complain ~ I just got some good feedback on Friday ~ but for me ~ it's not enough! I want concrete letters in my hand ~ definite surgery dates. Enough already with the drama of the insurance dance ~ once again I am beginning to think that I am making all of this up and it's all in my head. Does the fact that I need a seat belt for my desk chair today so that I don't fall out of it indicate that I'm not 100%?
Casting Crowns released their newest CD today ~ The Alter and the Door. I have already found a new song that speaks right to me ~ Somewhere In The Middle ~ "Deep water faith in the shallow end..." ~ what an image ~ I can do deep water ~ let's go!
Somewhere In The Middle ~ Casting Crowns
Somewhere between the hot and the cold Somewhere between the new and the old Somewhere between who I am and who I used to be Somewhere in the middle you'll find me
Somewhere between the wrong and the right Somewhere between the darkness and the light Somewhere between who I was and who you're making me Somewhere in the middle you'll find me
Just how close can I get, Lord, to my surrender Cause I'm losing all control
Fearless Warriors in a picket fence Reckless abandon wrapped in common sense Deep-water faith in the shallow end We are caught in the middle With eyes wide open to the differences The God we want and the God who is But will we trade our dreams for his Or are we caught in the middle Are we caught in the middle
Somewhere between my heart and my hands Somewhere between my faith and my plans Somewhere between the safety of the boat and the crashing waves Somewhere between a whisper and the Lord Somewhere between the altar and the door Somewhere between contented peace and always wanting more
Somewhere in the middle you'll find me
Just how close can I get, Lord, to my surrender Cause I'm losing all control
Fearless Warriors in a picket fence Reckless abandon wrapped in common sense Deep-water faith in the shallow end We are caught in the middle With eyes wide open to the differences The God we want and the God who is But will we trade our dreams for His Or are we caught in the middle
Fearless Warriors in a picket fence Reckless abandon wrapped in common sense Deep-water faith in the shallow end We are caught in the middle With eyes wide open to the differences The God we want and the God who is But will we trade our dreams for His Or are we caught in the middle Are we caught in the middle
Lord I feel you in this place And I know your by my side Loving me even on these nights When I am caught in the the middle Caught in the middle
Compassion: sympathetic consciousness of others' distress together with a desire to alleviate it
Compassionis a feeling deep within ourselves —a "quivering of the heart" — and it is also a way of acting — being affected by the suffering of others and moving on their behalf. "Compassion is not sentiment but is making justice and doing works of mercy. Compassion is not a moral commandment but a flow and overflow of the fullest human and divine energies." --Matthew Fox
************************************************************************************* I went to my doctor's appointment this morning with a sense of peace ~ to HIM, the future is already history ~ This is my journey, but I won't be given more than I can handle ~ it's not going to be easy ~ I knew that when I committed to letting Jesus direct my life. Sometimes I get so distracted and loose site of the steady horizon.
Second opinion surgeon came into the exam room, looked my in the eye, and asked me what I needed for him to do so that I could go ahead and get my surgeries taken care of. He told me he doesn't do the tethered cord surgery, but said that he would write a good letter stating that TCI needed to take care of all of my surgeries. He totally understands the connection between the brain and the spine and he reiterated that I need to go ahead and get this taken care of, NOW! He told me he was going to write 2 separate letters for me, one for the decompression and one for TC. They will be ready for me to pick them up next week.
What an answered prayer ~ and thank God for a compassionate doctor!
Day by day, dream by dream I fight to find the way to go Every day opens a different door Every dream shadows the one before But slowly I can see the way You've made for me
[Chorus:] Straight ahead I can see your light Straight ahead through the dark Straight ahead there's no left or right Straight ahead to your heart
Carry on through the night When the road is hard to find Lying lights tell me to turn around Lying thoughts tell me I'm lost not found But feeling I can see You're waiting there for me
When I think about all that is riding on my appointment this week I can't help but hear: "This is our most desperate hour. Help me, Obi-Wan Kenobi; you're my only hope." So ~ my appointment with Second Opinion neuro-surgeon is tomorrow morning. I am not sure what my expectations are other than the desperately needed 2nd letter of recommendation to get the decompression done at TCI.
Anything else is frosting ~ but ~ I will have to do my happy dance (think hands raised high in the air, a grin from ear to ear on my face and spinning around in circles until I fall down ~ it's my classic happy dance) if the doctor believes me when I tell him that I also need the tethered cord surgery. My doc is not only a brain doc but spinal issues are also his specialty.
It would be awesome if he totally agreed and said that he could easily perform the TC surgery in a couple of weeks ~ as you can tell I am a dreamer ~ but I also believe in miracles.
I have been given pretty strict orders from my neuro surgeon to hang up my running shoes ~ but of course, anyone who knows me knows that it's not a good idea to tell me that I can't do something. So I have listened to my docs advice ~ OK ~ I hear you ~ put aside any dreams of competing in a marathon or triathlon any time soon ~ I can do that. But cease running altogether ~ seriously ~ not gonna happen.
I have felt pretty wrotten this week ~ most of the time I have felt much like a drunk sailor with a killer headache on rough seas ~ it's not a pretty picture! The turkeys have really getting me down ~ so when I had a small burst of energy tonight, I thought I would try out my sea legs on land and try to squeak out a run. I haven't been running in a couple of weeks and the last time I could only muster a mere mile at a snails pace.
Tonight, I set my iPod to my favorite running mix ~ cue the Training Montage from Rocky IV ~ and started out on my run. For the moment, I felt happy that my body wasn't completely failing me. Just a year ago I could occasionally run 6 miles ~ today, I would settle for a slow 5K. Having a positive attitude and pushing myself beyond my limits has always been an internal mantra for me. I'm no Wonderwoman ~ but pushing through the pain and fatigue gives me great strength. I need to give my brain more growth opportunities so that it remembers how to be a survivor. I will need those skills finely tuned so that my recovery from surgery is speedy.
Tomorrow ~ I will probably pay for shaking my brain up and down for half an hour ~ but the training exercise was necessary and a little bit of my sanity is once more restored.
Last night, we were out of napkins. We were using neatly folded paper towels as proxy napkins. When I can actually accomplish something in a days time I see it as a small victory. So, when I was out shopping for school supplies at lunch ~ does anyone carry those #$%$^ 3-hole punched/2 pocket folders?!!??~ I bought some napkins. Who knew there were so many choices ~ I just want some plain, functional, disposable napkins, please.
Anyway ~ mission accomplished ~ a small sense of satisfaction has washed over me for the time being. Funny thing about napkins ~ after seeing the movie, The Holiday, I can't hear the word napkin and see Jude Law doing his Mr. Napkin thing....
Feeling bleak ~ my mood matches the foggy air ~ skies heavily laden with gray clouds. A killer Chiari headache pounds at the base of my head, again, today ~ pulsating to the beat of my heart ~ like a hammer slamming into the back of my head.
Press on ~ have faith that relief is on the horizon. Lean by faith, not by feelings. It's how I have learned how to cope with pain. I don't need anyone to fix it for me ~ just sharing where I am today ~ it's the nature of the brain tail beast. Queli's post really helped me put words to what I have been feeling lately ~ reminding my that I do have a greater purpose on Earth that is greater than the bounds of my human body.
Hope and faith in the Lord is the only thing holding my up today.
I am reading the Chronicles of Narnia again. I read the books as a child, but thought they would be a fun, easy read this summer. Since the first movie, The Lion, the Witch and the Wardrobe was released the other six books are in the process of being made into movies, too.
C.S. Lewis is such an incredible story teller. his words are both magical and spiritual. I just finished The Magicians Nephew. Chronologically, it is the first book in the Narnia series. The book tells the tale of how Aslan created Narnia and breathed life into the plant life and animals. It also focuses on how the witch came to Narnia and how a lamp post ended up in the middle of the forest.
But, back to the title of the blog, I want Aslan as my Ambassador. I would take him with me to my doctors appointments. One look at him and I am sure that I would get the green light for surgeries ~ no questions asked. Aslan has been know to put the fear of God into people just by being present. On the other hand, he is a gentle giant. A girl can dream ~ right?
I recently bought a t-shirt to help raise Chiari awareness. Needless to say, I am getting all kinds of reactions. Most people laugh ~ how clever, they say. But, seriously, who wears something like that? A bragging brainiac? A nerdlette? I am thinking that maybe I should put on the back "TRUE STORY!"
I wish it was a laughing matter ~ my brain is 2 big 4 my head so I get to have surgery to make more room for it ~ let's call it brain renovation ~ awesome ~ can't wait... I am hoping that despite my twisted humor I will do my part to help educate the general public on Chiari Malformations. Education is half the battle. Thousands of people are walking around out there who have unexplained dizziness, brain fog, headaches and all kinds of other symptoms. My hope is that I will shine the light for someone who has been searching for years for a diagnosis.
It takes a lot to spook me lately ~ I am facing brain surgery ~ what could be more scarier than that, you ask? Well ~ something really bizarre happened on my way home yesterday. I drive the ever so environmentally friendly Prius ~ I get roughly 50 miles to the gallon, I have had no complaints in the past 3.5 years (unless you count the obnoxiously loud beeping noise that would come on when in reverse ~ had it de-activated a while back).
Back to the weirdness ~ I was listening to a CD and all of the sudden there was no more sound coming out of the speakers. This happened right in the middle of a song. So I pushed the power button for the sound system ~ nothing. I pushed the climate control and although my AC was on and blowing out the vents, the console said that my AC was disconnected. Then, the music comes back on and the console says that the power is off. Since my car is a hybrid and there are a lot of high tech electrical things going on ~ it gave me cause for concern. I am a little annoyed that I will have to take it into the dealership for diagnostic testing ~ but this isn't what freaked me out.
Today, I do some research on line ~ type in Prius and electrical problems and I find this article. The title read ~Prius Battery Accessory for EMF Problem ~ does anyone else sense some red flags here??? I do some more searching and it appears that the battery emits unsafe levels of EMF ~ nice. I go on to read that people who have corrective brain surgery for Chiari Malformations sometimes have shunts inserted in their heads to regulate spinal fluid flow. Stay with me ~ I do have a point. There are magnets inside these shunts and they interfere with electromagnetic fields. So ~ if I did get one of these neat shunts, then drove around in my hybrid car, there would be the possibility of death.
It's all becoming clear to me ~ why it's taking so long to have the surgeries scheduled ~ more research to be done ~ it's not time yet ~ but HOLY HEAT!!! SERIOUSLY ~ can this really be true????
FEAR is real ~ FEAR can be paralyzing or give you the strength to do the impossible. Rosa Parks was quoted as saying, "I have learned over the years that when one's mind is made up, this diminishes fear; knowing what must be done does away with fear." I totally agree with her statement and can reflect that my initial fear has diminished now that I know what must be done.
Here I go ~ I am going to fly my Lord of the Rings (LOTR) freak flag high, again, brace yourself. Mount Doom ~ it's an ominous, scary place that reeks of fear. I could cower, shield my eyes, look away ~ but that's not me ~ I'm headed toward the very place that others run from.
Getting there is hard ~ the air is oppressive ~ it's going to get very uncomfortable during my journey ~ but it's a means to an end. My brain tail is broken ~ the longer I hold onto it the worse I feel. I want to throw it into the fire ~ be rid of it! This is my journey to take ~ my burden to bear. It feels like I am moving at a snails pace just getting there ~ but I am still in motion ~ still standing ~ still breathing.
Frodo: "I cannot do this alone."
[Galadriel turns back.]
Galadriel: "You are a Ring bearer, Frodo. To bear a Ring of power is to be alone."
[Galadriel lifts her hand up. A ring adorns her finger.]
Galadriel: "This is Nenya, the Ring of Adamant, and I am its Keeper. This task was appointed to you, and if you do not find a way, no one will."
Frodo: "Then I know what I must do. It's just… I'm afraid to do it."
[Galadriel bends down to meet him at eye level.]
Galadriel: "Even the smallest person can change the course of the future."
Psalm 27:1 [ Of David. ] The LORD is my light and my salvation— whom shall I fear? The LORD is the stronghold of my life— of whom shall I be afraid?
Psalm 112:7 He will have no fear of bad news; his heart is steadfast, trusting in the LORD.
Jeremiah 29:11 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.
A wise friend of mine, having already survived brain surgery, recently gave me some sage advice. She told me to plan a trip to help me get through this rough time and give me something to focus on when I am consumed by the enormity of brain surgeries!
Scotland has always been calling out to me ~ more recently, the Isle of Skye. I have no idea how I am going to make a trip like this happen, but I have faith that everything will come together.
I can definitively say that I have arrived at the rising action point in my Chiari journey. After waiting for a reply from the local neuro-surgeon ~ it only took him five weeks to draft a letter reeking of cowardice and ignorance ~ I can check off another task off my list.
So ~ what next??? I have followed orders from the insurance company to the letter, including seeing idiot local surgeon so that he could completely discount my condition and requested tethered cord (TC) surgery. Not only has he refused to do the TC surgery, he has so kindly offered to the 'rather routine' (his words no mine) decompression for me. How kind ~ what a nice guy ~ of course he didn't even do an examination when I saw him, unless you consider following his finger back and forth and testing the reflexes on my knees an accurate examination. Does he thinks he is doing ME a favor?!?
If there is a silver lining in here ~ the one good thing is that come hell or high water, the village idiot surgeon won't lay one hand on me. I would rather perform my own brain surgery!!! So ~ I have to let the anger and disbelief die down a bit ~ regroup. I will run to the shelter of my 2nd surgeon next week ~ whom I absolutely adore ~ and have him write my second required recommendation letter for decompression at TCI. Maybe I will get the decompression before the TC ~ at this point ~ I just want to get a surgery date on the books. At this rate, the earliest date would be in November.
This past weekend I went camping with some friends. To some, the thought of sleeping outside in the woods, in the dark, with nothing but a tent and sleeping bag to serve as a barrier between you and night creatures can be absolutely terrifying. I, on the other hand, absolutely love the simpleness of solely relying on a campfire and a flashlight. I had a chance to quiet the clamor in my mind for a few days and listen to what messages mother nature would deliver.
The first night, the temps got down in the low 40's. After late night tales of black bears and creatures licking the outside of tents, I tried to no avail to get to sleep. My body was tired but my mind was stimulated. I wasn't scared of the dark veil that had shrouded the forest, my senses were alert and listening to all of the night creatures that were wide awake and communicating.
After the loud din of cicadas died down around 2am, I had the rare opportunity to be serenaded by great horned owls. I didn't know what kind they were until I looked them up today ~ you can listen to their calls on text links.
The owl has strong symbolism as a Native American Totem. I wasn't surprised to read about the symbolism of the Great Horned Owl, because the message that they delivered couldn't be more perfect for me and where I am in my life's journey.
The Great Horned owl is known to have clairaudience ~ the power or faculty of hearing something not present to the ear but regarded as having objective reality. They also symbolize: insight into the Shadow Self ~ timing ~ protection of the unseen ~ sister to the red tailed hawk ~ able to hear what is not spoken ~ harbinger of new cycles. Owls have excellent vision in the darkand this uncanny vision has earned the owl the reputation of being able to pierce beyond the veil that separates the physical world from the spirit world. Since they filter out light from the darkness, they remind us that both exist at the same time. The owl totem gives us greater insight into life lessons and experiences.
It is believed that the Great Horned Owl is a messenger heralding new cycles and change. They alert us that change and growth opportunities are on the way, encouraging us to step out into the light of a new day. The owls tufted feathers resembling ears make them good listeners. Music is deeply stirring to the horned owl soul and can often elicit healing experiences. I could go on and on about how the owl serenade impacted me ~ more will be revealed in time. For now, I feel incredibly blessed to have spent time in their presence for two nights.
I am patiently standing in line at the grocery store, feeling somewhat content for nearly completing my task of shopping for a camping trip this weekend. Suddenly, a jolt of panic rips through my brain ~ holy heat ~ I have no freaking idea where I parked my car!
Seriously, this short term memory failure is so not funny any more. At first, I'll admit, it was a little humorous. How could I possibly have forgotten where I parked my car. I just parked it not 10 minutes ago. I have a Bachelors of Science degree and they didn't teach any classes on how to regain your short term memory when your rouge brain tail has hidden it from you in the dark recesses of your mind!
Last thing I remembered when I was pulling into the parking space was seeing two surprised nuns dressed in royal blue habits. Thank goodness I still have my photographic memory in tact! It must not be stored in the cerebellum, otherwise, I would be in big trouble.
Mam ~ can I help you find your car?
Why certainly officer ~ I parked it over there where the scared nuns were standing. I nearly ran over them in my stealth hover craft.
Mam ~ I guess it would have been more helpful if you had run over them, then we could locate your car a little easier~
Did I tell you that my brain tail makes me a little snarky at times?!?
All is forgiven ~ humbles me to no end ~ Jesus, can you show me just how far the east is from the west ~turn my darkness into light ~ can't live by what I feel ~ I'm not holding onto you ~ you are holding onto me ~
East to West by: Casting Crowns
Here I am Lord and I’m drowning In Your sea of forgetfulness The chains of yesterday surround me I yearn for peace and rest I don’t want to end up where You found me And it echoes in my mind Keeps me awake tonight
I know You’ve cast my sin as far As the East is from the West And I stand before You now As though I’ve never sinned But today I feel like I’m just one mistake away From You leaving me this way
Jesus, can You show me just how far the East is from the West? Cause I can’t bear to see the man I’ve been Rising up in me again In the arms of Your mercy I find rest You know just how far the East is from the West From one scarred hand to the other
I start the day, the war begins Endless reminding of my sin And time and time again Your truth is drowned out by the storm I’m in Today I feel like I’m just one mistake away From You leaving me this way
Jesus, can You show me just how far the East is from the West? Cause I can’t bear to see the man I’ve been Come rising up in me again In the arms of Your mercy I find rest Cause You know just how far the East is from the West From one scarred hand to the other
I know You’ve washed me white Turned my darkness into light I need Your peace to get me through To get me through this night I can’t live by what I feel About the truth Your word reveals And I’m not holding onto You But You’re holding onto me You’re holding onto me
Jesus, You know just how far the East is from the West I don't have to see the man I’ve been Come rising up in me again In the arms of Your mercy I find rest (mercy I find rest) You know just how far the East is from the West From one scarred hand to the other
(Just how far, the East is from the West, Just how far) From one scarred hand to the other (You know just how far, the East is from the West, Just how far) From one scarred hand to the other
So ~ there I was ~ soaking up the sun on the beach. The endless thundering motion of the ocean was helping me to untangle the thoughts in my head. The fact that I was officially on vacation was beginning to sink in ~ I've only got a week to relax so hurry up and start unwinding already!
One of my favorite things to do while spending time on a beach is to go for a long walk ~ ALONE. So, the first chance I got ~ I was off for a long, thought provoking walk down the beach. I walked down where there were no umbrellas, kids playing in the surf with boogie board, beach blankets and no people ~ just me, sand, waves and rocks. Now ~ spending my childhood summers on beaches off the Gulf of Mexico was a much different experience than this beach on Cape Cod ~ WAY DIFFERENT ~ but a good different. The main difference, besides the water temps ~ was that on Texas beaches, there are shells strewn all along the coastline. Cape Cod beaches on the Atlantic side have rocks ~ weird phenomenon ~ took me three years to get used to it ~ but the rocks are amazing.
I used to collect rocks from Texas rivers ~ I was attracted to their smooth, round shape. Knowing that the rocks endured years of weathering in the cold rivers was facinating. Where did the rocks start out? How far up stream? What did it look like when it fell into the water? The rocks on the Cape tell a simiar story. They have spent years tossing around in the ocean being battered and blasted by the waves and time. Their journey has been long.
Anyway ~ when I go on a thought provoking walk, my only objective is to let my mind relax and pick up objects that 'speak to me'. Don't worry ~ first I hear voices and now rocks are talking to me ~ holy heat! ~ I'm really losing her mind now!!! SERIOUSLY ~ you have got to know what I am rambling about ~ it's happened to you on a walk ~ right? If not ~ you have got to try it some time!
Rocks ~ speaking to me ~ back on track ~ my point ~ I do have one ~ let me get to it ~ On this one particular walk, I picked up several rocks that spoke to me ~ that's them at the top of the page. I call them my 'brain tail rock collection'. Just look at them ~ they look like my brain tail ~ every one of them! If you turn your head to the right, it even looks like my spinal cord ~ freaky ~ I know it's weird ~ just thought it was humorous that of all the rocks out there ~ these are the ones that I hand picked!
If you know what you are looking for, you can see the images, clearly. But to the untrained eye, if I told you that I saw horses in this picture you would think I was a kook! My medical situation has morphed into an enigma ~ some things just can't be explained and/or understood by anyone but an expert. Take for example the ever elusive Occult Tight Filum Terminale ~ Apparently, I have baffled my latest neuro-surgeon. Today, I called to get an update on his findings from his extensive scrutiny of my MRI films (he's had 4 weeks to mull over the information). His medical assistant told me that he had just drafted a letter to send to me.
A letter??? So ~ he's going to dismiss me as a patient due to his expertise ~ he finds no tethered cord and no need for surgery. I don't have that in writing, yet, but I am pretty sure that's the verdict. So that means that I have a week to plot out my next steps and plan of attack. I sense that an appeal is just around the next bend in the road.
You guessed it ~ spinning out of control ~ again! You know that feeling you get when you have gotten onto a ride at the fair and realize after the ride has started that you really weren't sure what you were getting yourself into until it was too late. You just shut your eyes and hold on for dear life and tell yourself that it will all be over in a couple of minutes. The spinning will stop soon. Well ~ shutting my eyes really tight and holding onto my desk does not work that well while I am at work. It doesn't bode well for a very productive Monday!
So ~ how do I really feel about all of this??? I am not a happy camper ~ I never realized how closely emotions are linked ~ like MAD & SAD. When I am having a lot of symptoms, I tend to be angry most of the day ~ which is a really bizarre phenomenon ~ because I am really feeling sad. It's confusing, even to me ~ it's like everything in my brain has been put in a blender and mixed up. Then, I am supposed to look at what's left and make some sense out of it ~ SERIOUSLY makes me feel like a crazy person! So ~ a word of advice to friends and family ~ if I say something mean ~ don't take it personally ~ it's my brain tail talking and not me! But, seriously, in advance ~ 'I am sorry!'.
You've heard me say it a thousand times ~ but I'm going to say it again ~ MUSIC INSPIRES ME ~ I heard a new song this morning that really spoke to my heart ~ I wanted to share it with you. Click here (Play SCC's New Song) to hear the song. Just when I thought that there couldn't possibly be a new song out there that would resonate with me ~ a breath of fresh air appears and breathes hope into my life, again.
It's time for letting go All of our "if onlies" For we don't have a time machine
And even if we did Would we really want to use it Would we really want to go change everything
Cause we are who and where and what we are for now And this is the only moment we can do anything about
So breathe it in and breathe it out And listen to your heartbeat There's a wonder in the here and now It's right there in front of you And I don't want you to miss the miracle of the moment
There's only One who knows What's really out there waiting And all the moments yet to be And all we need to know Is He's out there waiting To Him the future's history
And He has given us a treasure come right now And this is the only moment we can do anything about
So breathe it in and breathe it out And listen to your heartbeat There's a wonder in the here and now It's right there in front of you And I don't want you to miss the miracle of the moment
And if it brings you tears Then taste them as they fall Let them soften your heart
And if it brings you laughter Then throw your head back And let it go Let it go, yeah You gotta let it go
And listen to your heartbeat
And breathe it in and breathe it out And listen to your heartbeat There's a wonder in the here and now It's right there in front of you And I don't want you to miss the miracle of the moment
And breathe it in and breathe it out And listen to your heartbeat There's a wonder in the here and now (here and now) It's right there in front of you And I don't want you to miss the miracle Of the moment
Sometimes, I wish I had been gifted with MRI-vision so that I could catch a glimpse of what's going with my brain tail. The experts claim that a herniated brain tail can remain in the same spot for years and never move OR it could rapidly descend into the spinal column. The only way to find out is by having a MRI done.
This week I have had increasing numbness in my fingers, hands, arms and face. Maybe I have decreased CSF flow (cerebral spinal fluid)? When I found out that I have an occult tethered cord, the doc told me that my chances of getting a "spinal bubble of doom" (term created by the spinal bubble expert, herself) were increased. So without MRI vision, I really have no way of knowing what's going on inside my spine ~ but I do know that things are a changing.
Ever feel like someone sent you out to the end of the dock to wait for the next boat to pick you up? You sit there ~ hang you legs off the edge ~ take in the tranquil scenery ~ you feel at peace knowing that you are in transition. The next leg of your journey is about to begin ~ you have a sense of accomplishment, because you know what the next step is and where you are going. Then you notice that several hours have passed ~ you look around and there is no one in site ~ just you, the dock and the water. No boats on the water~ the sun is slowly sinking into the horizon ~ you get a clutch in the pit of your stomach. It is then that you realize that you are all alone ~ What do you do? Panic ~ yell ~ call out for help? Or do you take a deep breath, steady your racing heart and just breathe and enjoy the calm and stillness of the moment ~ knowing that the boat will come ~ when the timing is right.
One of the nice side effects of Chiari is an unquenchable thirst. Apparently, the cerebellum is in charge of my thirst meter.
I drink probable more than 100 oz if water a day and yet I am still thirsty! There is evidence to suggest that the cerebellum is responsible for a number of cognitive tasks. Here are a few of them: sensory processing and discrimination, mental imagery, motor learning, classical conditioning, non-motor learning and memory, linguistic processing, timing estimation, emotion perception and experience, visual spatial memory, executive function (including verbal working memory, strategy, reasoning, and verbal fluency) , and autonomic functions including the experience and anticipation of pain, thirst, hunger, and smell.
So ~ in summary ~ all of the above mentioned functions go haywire when the cerebellum is being squished into the spinal column!
Matthew 5:14 “You are the light of the world—like a city on a hilltop that cannot be hidden.
"I wanna be in the light as you are in the light I wanna shine like the stars in the Heavens Oh, Lord be my light and be my Salvation 'cause all I want is to be in the light." ~ DC Talk
This morning, I looked out the back window noticed that there were men in hard hats walking around in my back yard! I knew that they were coming, I just didn't know the exact day and time. The power company was cutting tree branches away from the power lines ~ preventative maintenance ~ protecting us and our house from any power outages or fires. And an extra perk ~ by cutting away harmful branches, we now have more light in the backyard!
Is it just me or is the symbolism so thick that it doesn't need any explaining! An expected event at an unexpected time ~ Cutting away things that are in the wrong place to prevent further damage ~ Light restored to a place that had fallen into shadow. I am taking this as a good sign of life restored at the most unexpected moment.
Names have been erased to protect the innocent (you can click on the letter to zoom) ~ but I just had to share the letter by 2nd opinion neurosurgeon ~ what a compassionate man! I submitted my all important two letters of recommendation for surgeries at TCI today ~ now I have to wait and see what the medical director decides ~ it's out of my hands for today.
