It was 13 years ago today that I got the unexpected phone call that my father had died.
The way I heard it, he and his wife went out to Friendly's for lunch, Dad had a big steak, and when they left and got into the car to drive home, Dad suffered a heart attack.
I live 3000 miles away so I didn't hear about it all until he had passed. He was 80 years old, and we had just celebrated that date in November. His birthday was actually Dec. 10, but ,because of New Hampshire winters, my stepmother decided to have his party early in order to avoid travel challenges. I'm so glad she did.
I'm so glad my Dad lived to be a good, long age.
I'm glad he did not have to go into a nursing home (not that I would have allowed that!) and suffer.
His spirit was so free, even though he walked with a walker after several debilitating strokes.
And I'm so glad that he accepted Jesus as his Savior years before, because now I know without a doubt that he's waiting there for me, to help me over.
A friend of mine passed away last Sunday from a brain tumor. Curly was an extraordinary man, like my Dad was. He was a strong family man, he lived a life of respect and honor, and he was incredibly gifted at songwriting and singing and playing the guitar. He took one of my poems and put amazing music to it, and then, together, we won an award for that collarboration.
I have a card I picked up to send to Curly's wife, and I chose it because of the unique and original thought expressed on the front of the card. In honor of Curly and my Dad today, I'm going to type it here:
What if the brilliant,
twinkling stars
that bring the dark night sky to life
are windows looking out of heaven?
and at the very moment
when we're wishing on those stars,
hoping that the loved ones we have lost are happy,
safe, and free...
maybe they are looking
at those same stars from the other side,
making the same wish for us...
sending us all their love.
Sharon Valleau
Though they did not know each other "down here," in my mind Dad and Curly are together now, strumming guitars, Dad listening to Curly and loving his deep, rich voice, his poetry in his lyrics. Every once in a while, they have to put the instruments down and go welcome one of their friends and family into Heaven. It's the way things are done up there, I've heard.
Welcome home, thou good and faithful servant.
Wednesday, December 16, 2009
Friday, December 11, 2009
The Christmas Guitar
I grew up many years living alone in the little house on Bog Road with just my Dad. My parents divorced when I was 8, and eventually, my older sister moved into Mom's house, while I stayed with Dad. This created a close relationship between Dad and I that was a treasure to me.
Dad played guitar. He had an old, F-hole guitar of some kind. I used to know the brand but I have forgotten it. He sang and played songs like "Hey, Mr. Banjo," and "The Wabash Cannonball." Dad loved listening to down-home music, and his cousins often got together and jammed on guitars, stand-up bass, fiddle, accordion and banjo.
I wanted a guitar almost as much as I dreamed for a horse growing up. But we were poor, and getting a guitar seemed much more likely than getting a horse. Dad promised me that I'd get a horse, "when his ship came in." But we lived quite a long ways from the ocean.
With parents living in different houses about 30 minutes apart, I usually spent the weekends with my Mom and her husband and their kids. Dad would drive me up there and let me off on Friday night and then pick me up on Sunday. All weekend, I'd pray for there to be a horse out in the little shed when I got home.
Though I really didn't understand the Gospel, I had faith even then, and I knew God could make a horse appear out there if He wanted to. If I asked hard enough. So, as soon as we drove into the driveway, away I'd run out to the shed to see if there was a horse tied up in there for me.
There never was, but that is another story, of how I got a job at 15 and bought my first horse, a 3 year-old, wild Buckskin gelding named Buckshot, with my saved paychecks from waitressing.
One Christmas rolled around and Dad knew I wanted a guitar. That must have seemed a much more achievable gift to him than a horse.
I was up at my mother's house and on Christmas, after lunch, the phone rang. Mom said it was Dad...for me.
I took the phone and Dad said, "Do you know what this is?"
And he strummed a chord down the strings of a guitar.
I said, "No...what is it?"
"It's your guitar," he said, his sly smile evident in his voice.
"Come get me now!!!" I demanded.
He did, and as we drove again into the driveway, I piled out of the old Hudson and ran into the house. We never locked the doors in those days so there was no reason to stop and get the old skeleton key out from under the garage eaves and unlock the door.
I opened the door and looked behind it, at the Christmas tree. No guitar or large, wrapped, guitar-shaped box! So, I ran from the living room into my bedroom, but no guitar.
"Where is it?" I shouted to Dad, who'd come into the house behind me. Our little house, he built it in 1947, one room at a time. It was very tiny, but full of our love.
He laughed out loud and said, "Right here, silly!"
I went back into the living room and there it was, lying on the couch. A brand new Silvertone guitar he'd bought for $20 at Sears. That was one-third of his paycheck. He'd tuned it all up for me, had probably played with it all weekend!
It was a black guitar with a sunburst design, a reddish-golden glow that burst out from around the sound hole. And it was the best thing I ever saw.
Over the next few days, he taught me the three chords in the key of G.
I didn't have a guitar case, but I had the cardboard box the instrument had come in, and it had fold-out, cardboard handles. When summer came, I would pedal my bike the 4 miles or so up to my best-friend, Barb's house, somehow hanging onto those cardboard handles and riding up a very steep hill past the granite First Congregational Church, up Hutchins Street.
Barb and I would spend whole days pretending we were the Beatles and now I had the guitar to add to the authenticity of our imagination. Over and over, along with our other friend, Gretchen, we'd sing "She Loves You, Yah, Yah, Yah," and "I Want to Hold Your Haaannnnd!"
Years later, I sold that guitar to my brother, Larry. I wish I still had it.
Many years after that, after moving out West, getting married and working on ranches, I picked up music again, playing guitar and mandolin and banjo. My Dad got to see some of that, and just now, while writing this, I am remembering a wonderful spiritual connection between my Dad, his guitar and me. And God.
It was in the 1980's, I was in my 30's. I had several years before (in 1978) learned about Jesus, the reason He came to earth to be born in a manger. Once I understood God's perfect plan of salvation, I accepted Him into my life, I dedicated my life to Jesus, and became what the Bible calls, "saved."
I always tried to tell my Dad about Jesus. It was important to me that he be in heaven with me. And I do believe that only by Jesus are we allowed to enter Heaven's gates and God's presence.
I believe that because that is what the Bible states very clearly. But he had never really listened or had a heart open to it.
Back in NH to visit my Dad and Mom (in separate houses!), one night I was sitting on my Dad's bed, and I picked up his old, F-hole guitar. It was in tune, like it always was. I quietly strummed and sang, "Amazing Grace."
"Amazing Grace, how sweet the sound...that saved a wretch like me.
I once was lost but now I'm found...was blind but now I see."
Dad came in and asked me, "Can you tell me what that song means?"
Dad was about 70 then. I'd told him many, many times the way to salvation through belief in Jesus in the previous 7 or 8 years. I was jaded. I didn't see then that a mighty spiritual moment was about to happen.
I put the guitar down gently on the frayed, chemise bedspread, and led the way for my Dad to follow me into his tiny living room. I sat on the same couch that had lovingly cradled my first guitar back when I was a kid. And I told him what I call the "Reader's Digest" version of salvation.
I told him that sin stood between us and God. That God can only be surrounded by good and that only good can enter heaven, or commune with God. But humans (us) are not without sin. All of us sin and "come short of the glory of God."
So, God had to create a way for us, His children, to be saved, to come to Him. He sent His Son, Jesus, on Christmas morn, to be born in that manger. The child fulfilled all the prophecies in the ancient scriptures. He came to be "The Way, the Truth and the Life." Jesus grew up to say those words, and added, "No man cometh to the Father but by me."
I told Dad that the Bible shows us that we need to believe with all of our hearts in Jesus. That He is real, that He is God, that He came to save mankind. That baby that is so cute on Christmas cards had to be born in order to die a bloody, ravaged death, the death we deserve because of our sin. Jesus did that so we can be forgiven of our sins and can then have our place with God in Heaven, at His throne.
I asked Dad point-blank, "Have you ever done that, Dad? Have you ever given your heart wholly to Jesus?"
He said (I will always remember these words precisely!), "Who, me? No, I haven't."
I then asked him simply, "Would you like me to help you do that now?"
And he whispered, "I'm ready for it."
This wise, wonderful father of mine, the man I loved like life itself, who gave so much to me and for me, who sacrificed to raise me, who gave me unconditional love no matter what bad deed I might do...this bald, bespectacled man knelt down with me in his living room and we held hands, and as I prayed the "sinner's prayer," he repeated after me.
That night, Jesus came to live in my Dad's heart. He forgave Dad of all his sins, even the times he knew to do good and didn't do it. He performed a work in Dad's heart. And gave me assurance that when it's time for me to go, my dear Dad is right there waiting for me "on the other side."
What a glorious thing to know!
So it is that the Christmas guitar ties in with the real story of Christmas. That God used that connection He'd made between Dad and I, and even used the same house that I grew up in, though our spiritual experience together happened at least 30 years after the gift of the guitar.
Jesus was born for us. He died for us.
Jesus lived for us. He became the sacrifice for our misdeeds.
His life is the key to the door that opens to God.
There is only one Key, and it is not hidden under the eaves somewhere.
The Key is right out in the open, easy to find and accessible for everyone.
Merry Christmas, all of my dear friends.
Dad played guitar. He had an old, F-hole guitar of some kind. I used to know the brand but I have forgotten it. He sang and played songs like "Hey, Mr. Banjo," and "The Wabash Cannonball." Dad loved listening to down-home music, and his cousins often got together and jammed on guitars, stand-up bass, fiddle, accordion and banjo.
I wanted a guitar almost as much as I dreamed for a horse growing up. But we were poor, and getting a guitar seemed much more likely than getting a horse. Dad promised me that I'd get a horse, "when his ship came in." But we lived quite a long ways from the ocean.
With parents living in different houses about 30 minutes apart, I usually spent the weekends with my Mom and her husband and their kids. Dad would drive me up there and let me off on Friday night and then pick me up on Sunday. All weekend, I'd pray for there to be a horse out in the little shed when I got home.
Though I really didn't understand the Gospel, I had faith even then, and I knew God could make a horse appear out there if He wanted to. If I asked hard enough. So, as soon as we drove into the driveway, away I'd run out to the shed to see if there was a horse tied up in there for me.
There never was, but that is another story, of how I got a job at 15 and bought my first horse, a 3 year-old, wild Buckskin gelding named Buckshot, with my saved paychecks from waitressing.
One Christmas rolled around and Dad knew I wanted a guitar. That must have seemed a much more achievable gift to him than a horse.
I was up at my mother's house and on Christmas, after lunch, the phone rang. Mom said it was Dad...for me.
I took the phone and Dad said, "Do you know what this is?"
And he strummed a chord down the strings of a guitar.
I said, "No...what is it?"
"It's your guitar," he said, his sly smile evident in his voice.
"Come get me now!!!" I demanded.
He did, and as we drove again into the driveway, I piled out of the old Hudson and ran into the house. We never locked the doors in those days so there was no reason to stop and get the old skeleton key out from under the garage eaves and unlock the door.
I opened the door and looked behind it, at the Christmas tree. No guitar or large, wrapped, guitar-shaped box! So, I ran from the living room into my bedroom, but no guitar.
"Where is it?" I shouted to Dad, who'd come into the house behind me. Our little house, he built it in 1947, one room at a time. It was very tiny, but full of our love.
He laughed out loud and said, "Right here, silly!"
I went back into the living room and there it was, lying on the couch. A brand new Silvertone guitar he'd bought for $20 at Sears. That was one-third of his paycheck. He'd tuned it all up for me, had probably played with it all weekend!
It was a black guitar with a sunburst design, a reddish-golden glow that burst out from around the sound hole. And it was the best thing I ever saw.
Over the next few days, he taught me the three chords in the key of G.
I didn't have a guitar case, but I had the cardboard box the instrument had come in, and it had fold-out, cardboard handles. When summer came, I would pedal my bike the 4 miles or so up to my best-friend, Barb's house, somehow hanging onto those cardboard handles and riding up a very steep hill past the granite First Congregational Church, up Hutchins Street.
Barb and I would spend whole days pretending we were the Beatles and now I had the guitar to add to the authenticity of our imagination. Over and over, along with our other friend, Gretchen, we'd sing "She Loves You, Yah, Yah, Yah," and "I Want to Hold Your Haaannnnd!"
Years later, I sold that guitar to my brother, Larry. I wish I still had it.
Many years after that, after moving out West, getting married and working on ranches, I picked up music again, playing guitar and mandolin and banjo. My Dad got to see some of that, and just now, while writing this, I am remembering a wonderful spiritual connection between my Dad, his guitar and me. And God.
It was in the 1980's, I was in my 30's. I had several years before (in 1978) learned about Jesus, the reason He came to earth to be born in a manger. Once I understood God's perfect plan of salvation, I accepted Him into my life, I dedicated my life to Jesus, and became what the Bible calls, "saved."
I always tried to tell my Dad about Jesus. It was important to me that he be in heaven with me. And I do believe that only by Jesus are we allowed to enter Heaven's gates and God's presence.
I believe that because that is what the Bible states very clearly. But he had never really listened or had a heart open to it.
Back in NH to visit my Dad and Mom (in separate houses!), one night I was sitting on my Dad's bed, and I picked up his old, F-hole guitar. It was in tune, like it always was. I quietly strummed and sang, "Amazing Grace."
"Amazing Grace, how sweet the sound...that saved a wretch like me.
I once was lost but now I'm found...was blind but now I see."
Dad came in and asked me, "Can you tell me what that song means?"
Dad was about 70 then. I'd told him many, many times the way to salvation through belief in Jesus in the previous 7 or 8 years. I was jaded. I didn't see then that a mighty spiritual moment was about to happen.
I put the guitar down gently on the frayed, chemise bedspread, and led the way for my Dad to follow me into his tiny living room. I sat on the same couch that had lovingly cradled my first guitar back when I was a kid. And I told him what I call the "Reader's Digest" version of salvation.
I told him that sin stood between us and God. That God can only be surrounded by good and that only good can enter heaven, or commune with God. But humans (us) are not without sin. All of us sin and "come short of the glory of God."
So, God had to create a way for us, His children, to be saved, to come to Him. He sent His Son, Jesus, on Christmas morn, to be born in that manger. The child fulfilled all the prophecies in the ancient scriptures. He came to be "The Way, the Truth and the Life." Jesus grew up to say those words, and added, "No man cometh to the Father but by me."
I told Dad that the Bible shows us that we need to believe with all of our hearts in Jesus. That He is real, that He is God, that He came to save mankind. That baby that is so cute on Christmas cards had to be born in order to die a bloody, ravaged death, the death we deserve because of our sin. Jesus did that so we can be forgiven of our sins and can then have our place with God in Heaven, at His throne.
I asked Dad point-blank, "Have you ever done that, Dad? Have you ever given your heart wholly to Jesus?"
He said (I will always remember these words precisely!), "Who, me? No, I haven't."
I then asked him simply, "Would you like me to help you do that now?"
And he whispered, "I'm ready for it."
This wise, wonderful father of mine, the man I loved like life itself, who gave so much to me and for me, who sacrificed to raise me, who gave me unconditional love no matter what bad deed I might do...this bald, bespectacled man knelt down with me in his living room and we held hands, and as I prayed the "sinner's prayer," he repeated after me.
That night, Jesus came to live in my Dad's heart. He forgave Dad of all his sins, even the times he knew to do good and didn't do it. He performed a work in Dad's heart. And gave me assurance that when it's time for me to go, my dear Dad is right there waiting for me "on the other side."
What a glorious thing to know!
So it is that the Christmas guitar ties in with the real story of Christmas. That God used that connection He'd made between Dad and I, and even used the same house that I grew up in, though our spiritual experience together happened at least 30 years after the gift of the guitar.
Jesus was born for us. He died for us.
Jesus lived for us. He became the sacrifice for our misdeeds.
His life is the key to the door that opens to God.
There is only one Key, and it is not hidden under the eaves somewhere.
The Key is right out in the open, easy to find and accessible for everyone.
Merry Christmas, all of my dear friends.
Days of Apathy
I have decided...
I don't care.
I don't care anymore what a neurosurgeon thinks. I've seen six now, and they all come up with something different. Some brush me off as a pain in the backside, i.e. "I've never seen anyone like you, with your complaints, after a Jefferson Fracture."
The first neurosurgeon, the one I saw when I was brought into the ER 5.5 years ago, said later on, "You've healed straight and fine. Your neck is straight and fine."
The second neurosurgeon told me, "You're lucky to be alive. Get off the internet and get on with your life."
The third neurosurgeon found that my neck (C1) is still broken, is non-union. He told me that all my ligaments must have ripped and been broken when I broke my neck. He told me he could help me. One surgery and three years later, he told me there was nothing he could do for me, without having done a single thing to my skull base/upper C spine.
The fourth neurosurgeon was the one who yelled at me and told me that he'd never seen a patient come back to him after suffering a Jefferson Fracture and have the complaints that I have. He told me he wouldn't do anything for me and wouldn't take someone like me as a patient because he had never seen anyone like me.
The fifth neurosurgeon talked to me for 20 minutes, told me he would not take care of me if I had a surgery out of state and needed emergent help, and called up the referring doctor (the hematologist who sent me to him) and complained to him about sending me there and wasting his time.
The sixth neurosurgeon is the one I am seeing now. He's probably a good guy. He might have some good observations. But I'm past caring.
I got a copy of the report he sent my primary after seeing me. I read it, saw things he got wrong, saw new things, like the fact that in my NY imaging, he had not seen any slippage in the joints between C1 and C2 when I held my head in flexion during the xray. But, then he did see some slippage in the xrays he had done, in the same position, last month after I saw him for the first time.
This would explain a lot, when I think of how I already have been diagnosed with spinal stenosis in that area (narrowing inside the spine where the cord runs), and if a bone (C1) is slipping forward when I bend my chin toward my chest (look down), I can "see" how that narrows the area for the cord even more and likely compresses the cord. But then...neurosurgeon #3 said I had no brainstem compression from the C1.
Oh, I forgot Neurosurgeon #3a, as he operated on me with NSG #3, and he was the one who diagnosed me with having also suffered dislocation of the occipital condyles and said I had "a chiari, but not Chiari Malformation." I understood what he meant. This NSG is actually #7, then. And he has seen thousands of cases of Chiari. He is one of the leading experts on Chiari in the world. If he said I have "low lying tonsils of the cerebellum" ie "a chiari," then I believe him.
NSG #6 doesn't like NSGs #3 and #3a (aka #7), so he wrote out a special paragraph in the report saying I do not have Chiari Malformation, which I already knew. But NSG#6 didn't let me speak too much to explain such things to him. I didn't have a chance to tell him I have dural ectasias in the lumbar area, too. I mean, I told him, but he talked over the top of me, so I know he didn't hear it.
Sigh...
All of this suddenly has tired me out, and I've become apathetic about it. I don't care. I've stopped hoping for a surgery to fix me. I'm at a place where it is what it is.
This attitude might all be temporary, but that's how I've been feeling lately.
And it's quite a freeing sensation. To not put so much hope into a man (NSG). To not have any expectations.
Maybe it's about time. But it's bittersweet...saying goodbye to hope.
I don't care.
I don't care anymore what a neurosurgeon thinks. I've seen six now, and they all come up with something different. Some brush me off as a pain in the backside, i.e. "I've never seen anyone like you, with your complaints, after a Jefferson Fracture."
The first neurosurgeon, the one I saw when I was brought into the ER 5.5 years ago, said later on, "You've healed straight and fine. Your neck is straight and fine."
The second neurosurgeon told me, "You're lucky to be alive. Get off the internet and get on with your life."
The third neurosurgeon found that my neck (C1) is still broken, is non-union. He told me that all my ligaments must have ripped and been broken when I broke my neck. He told me he could help me. One surgery and three years later, he told me there was nothing he could do for me, without having done a single thing to my skull base/upper C spine.
The fourth neurosurgeon was the one who yelled at me and told me that he'd never seen a patient come back to him after suffering a Jefferson Fracture and have the complaints that I have. He told me he wouldn't do anything for me and wouldn't take someone like me as a patient because he had never seen anyone like me.
The fifth neurosurgeon talked to me for 20 minutes, told me he would not take care of me if I had a surgery out of state and needed emergent help, and called up the referring doctor (the hematologist who sent me to him) and complained to him about sending me there and wasting his time.
The sixth neurosurgeon is the one I am seeing now. He's probably a good guy. He might have some good observations. But I'm past caring.
I got a copy of the report he sent my primary after seeing me. I read it, saw things he got wrong, saw new things, like the fact that in my NY imaging, he had not seen any slippage in the joints between C1 and C2 when I held my head in flexion during the xray. But, then he did see some slippage in the xrays he had done, in the same position, last month after I saw him for the first time.
This would explain a lot, when I think of how I already have been diagnosed with spinal stenosis in that area (narrowing inside the spine where the cord runs), and if a bone (C1) is slipping forward when I bend my chin toward my chest (look down), I can "see" how that narrows the area for the cord even more and likely compresses the cord. But then...neurosurgeon #3 said I had no brainstem compression from the C1.
Oh, I forgot Neurosurgeon #3a, as he operated on me with NSG #3, and he was the one who diagnosed me with having also suffered dislocation of the occipital condyles and said I had "a chiari, but not Chiari Malformation." I understood what he meant. This NSG is actually #7, then. And he has seen thousands of cases of Chiari. He is one of the leading experts on Chiari in the world. If he said I have "low lying tonsils of the cerebellum" ie "a chiari," then I believe him.
NSG #6 doesn't like NSGs #3 and #3a (aka #7), so he wrote out a special paragraph in the report saying I do not have Chiari Malformation, which I already knew. But NSG#6 didn't let me speak too much to explain such things to him. I didn't have a chance to tell him I have dural ectasias in the lumbar area, too. I mean, I told him, but he talked over the top of me, so I know he didn't hear it.
Sigh...
All of this suddenly has tired me out, and I've become apathetic about it. I don't care. I've stopped hoping for a surgery to fix me. I'm at a place where it is what it is.
This attitude might all be temporary, but that's how I've been feeling lately.
And it's quite a freeing sensation. To not put so much hope into a man (NSG). To not have any expectations.
Maybe it's about time. But it's bittersweet...saying goodbye to hope.
Tuesday, December 1, 2009
Keeping one foot in front of the other...and me and Sarah Palin.
One day progresses into the next, but the seasons outside my window show me that time is moving along regardless of my own perceptions. The rusty-colored leaves of the oaks are mostly gone and I love the opening up of the view from the front of our house. Now, I can see the hills, clad is shades of blue and green and gray, a couple of miles across the valley from us. These are called The Horse Heaven Hills, and at night, I can now enjoy the twinkling lights from the homes there, while before twilight, the westward-facing windows of those same homes reflect the brilliance of each orange or rosy-hued sunset.
Our neighbor just brought us a cord of firewood. We like supporting our neighbors in their labors of supplementing their own disability incomes. We know how much hard work it takes to go up into the mountains and cut and gather blocks of wood, split it up, bring it home and sell it, all to earn a meager amount for the amount of work involved. We did it for many years.
Medically, tomorrow is the appointment for my SPECT scan and the new lumbar MRI. However, I'm waiting for the authorization of these tests from my workers comp insurance company. If this is not forthcoming today, I will cancel the trip to Portland for tomorrow, reschedule perhaps for next week. God has a plan. I am actually looking forward to the SPECT scan with hopes it will reveal some things that no one else has been able to see.
I've been mostly staying in the house. I "think" about stepping outside, at least for some fresh air or to check on what my husband has going in his shop, but the thought of the walking and how it affects me keeps me inside. It's been a mixed-bag of weather, sunny for a few hours in the afternoons, most mornings start off cold, frosty, some fog, and some high clouds. Our weather is greatly affected by the ebb and flow of wind and water off the nearby, mighty Columbia.
On Saturday, we did drive to our shopping town over in Oregon, and I realised that was my first time out in a week.
My appetite is noticeably lessening, to me, actually a good thing. I need to lose weight and not doing much, it's hard to lose even an ounce. But with my swallowing issues now, the thought of food stuck in my throat for hours keeps me from wanting to eat much. I think I've lost a little.
Lastly, I've been reading Sarah Palin's new book, "Going Rogue."
I've always been a fan of this strong woman who had an obvious heart for serving our country. Yet, with her book, I've kept an instinctive, open mind. I didn't want to read it like a fan letter to herself. I didn't want to hear whining about treatment behind the scenes of the VP campaigns. I wanted to see the "stuff" she was made of.
She writes, obviously, without a co-author. In the first half of her book, her writing seems simplistic, colloquial and down-home. With folksy statements including phrases like "we kicked butt" and "we beat feet down to the courthouse," I wasn't sure how she would come across to the rest of the country. I mean, I love that type of talking, I talk that way too. But...I was expecting something that I thought was more academic from a person I voted for and expect to follow in the future.
I grew to love her talking style which was reflected in her writing. It "fit" me like a glove. Yet, I was also impressed when, halfway through the book, as Sarah began to write about her Governorship in Alaska, there wasn't any more of that folksy kind of communication. Subtly, Sarah got down to the business of what governing is about, serving the constituents, making things better even when tough choices must be made.
Reading her way of dealing with corrupt government and "Big Oil" has been inspiring and informative. I came away from the read with a huge respect for this woman and her family. And I consider the reported 9 or 10 investigators who have been hired to go over the facts in her book with the fine-tooth-comb. I know they want to earn their wages and come up with fabrications and fairy tales within her pages, but the book has been out a few weeks now and no one has come forth yet with any such allegations. I mean, she names names in this book in a way I, as an author, never would do. I admire her!
What they have been through, the judgments that have befallen Sarah Palin that would never have been put upon others, it all adds up to a good read. She is not whining in any sense of the word. Like me, she grew up working with men, and there is little compassion for whiners in that environment. She's just stating the facts, briefly, and then moving on.
I can understand now why she wanted to write this book, to tell "her side" of it all. I'm glad she has. I thought I liked her before. After reading this great book, I'm one of her biggest fans. One thing I've noted: during the VP campaign and even now, she doesn't have a chance to come across as intelligent as she truly is. She is not someone who really talks in sound bites. She needs time to explain her position, which I've learned from the read is basically that of Ronald Reagan, a political view she's held since high school.
I also have wondered if the interviewers, even those conservative ones, had read her book before interviewing her. There are so many fascinating questions I'd have asked her if I had the chance! The main thing is, this is a brilliant woman with good, common sense born of being raised on the Last Frontier and working at the physically-demanding jobs of Bristol Bay fishing, gutting fish at cannery plants, waitressing, putting herself through college earning her tuition herself. Her life has been one of hard knocks and she is a first-class survivor,handling each scenario with grace and aplomb.
One other thing: she has achieved and served in several ways I simply was not aware of and was not brought out in the VP campaign. For example, she held the office of President of the Alaska Mayors association when she was Wasilla mayor. And she also worked for the Governor of Alaska, before her terms in that office, as a liason with the big oil companies. This takes a tough and battle-hardened person of any gender, to stand up among these big moneyed corporations. After the assumption of the Governor's office, she caused changes throughout Alaska by causing more oil development and also initiating a watershed project of bringing natural gas to the lower 48.
Anyway....I'll get down off my soapbox now. Whether she runs for president some day or not, her book is definitely eye-opening.
Our neighbor just brought us a cord of firewood. We like supporting our neighbors in their labors of supplementing their own disability incomes. We know how much hard work it takes to go up into the mountains and cut and gather blocks of wood, split it up, bring it home and sell it, all to earn a meager amount for the amount of work involved. We did it for many years.
Medically, tomorrow is the appointment for my SPECT scan and the new lumbar MRI. However, I'm waiting for the authorization of these tests from my workers comp insurance company. If this is not forthcoming today, I will cancel the trip to Portland for tomorrow, reschedule perhaps for next week. God has a plan. I am actually looking forward to the SPECT scan with hopes it will reveal some things that no one else has been able to see.
I've been mostly staying in the house. I "think" about stepping outside, at least for some fresh air or to check on what my husband has going in his shop, but the thought of the walking and how it affects me keeps me inside. It's been a mixed-bag of weather, sunny for a few hours in the afternoons, most mornings start off cold, frosty, some fog, and some high clouds. Our weather is greatly affected by the ebb and flow of wind and water off the nearby, mighty Columbia.
On Saturday, we did drive to our shopping town over in Oregon, and I realised that was my first time out in a week.
My appetite is noticeably lessening, to me, actually a good thing. I need to lose weight and not doing much, it's hard to lose even an ounce. But with my swallowing issues now, the thought of food stuck in my throat for hours keeps me from wanting to eat much. I think I've lost a little.
Lastly, I've been reading Sarah Palin's new book, "Going Rogue."
I've always been a fan of this strong woman who had an obvious heart for serving our country. Yet, with her book, I've kept an instinctive, open mind. I didn't want to read it like a fan letter to herself. I didn't want to hear whining about treatment behind the scenes of the VP campaigns. I wanted to see the "stuff" she was made of.
She writes, obviously, without a co-author. In the first half of her book, her writing seems simplistic, colloquial and down-home. With folksy statements including phrases like "we kicked butt" and "we beat feet down to the courthouse," I wasn't sure how she would come across to the rest of the country. I mean, I love that type of talking, I talk that way too. But...I was expecting something that I thought was more academic from a person I voted for and expect to follow in the future.
I grew to love her talking style which was reflected in her writing. It "fit" me like a glove. Yet, I was also impressed when, halfway through the book, as Sarah began to write about her Governorship in Alaska, there wasn't any more of that folksy kind of communication. Subtly, Sarah got down to the business of what governing is about, serving the constituents, making things better even when tough choices must be made.
Reading her way of dealing with corrupt government and "Big Oil" has been inspiring and informative. I came away from the read with a huge respect for this woman and her family. And I consider the reported 9 or 10 investigators who have been hired to go over the facts in her book with the fine-tooth-comb. I know they want to earn their wages and come up with fabrications and fairy tales within her pages, but the book has been out a few weeks now and no one has come forth yet with any such allegations. I mean, she names names in this book in a way I, as an author, never would do. I admire her!
What they have been through, the judgments that have befallen Sarah Palin that would never have been put upon others, it all adds up to a good read. She is not whining in any sense of the word. Like me, she grew up working with men, and there is little compassion for whiners in that environment. She's just stating the facts, briefly, and then moving on.
I can understand now why she wanted to write this book, to tell "her side" of it all. I'm glad she has. I thought I liked her before. After reading this great book, I'm one of her biggest fans. One thing I've noted: during the VP campaign and even now, she doesn't have a chance to come across as intelligent as she truly is. She is not someone who really talks in sound bites. She needs time to explain her position, which I've learned from the read is basically that of Ronald Reagan, a political view she's held since high school.
I also have wondered if the interviewers, even those conservative ones, had read her book before interviewing her. There are so many fascinating questions I'd have asked her if I had the chance! The main thing is, this is a brilliant woman with good, common sense born of being raised on the Last Frontier and working at the physically-demanding jobs of Bristol Bay fishing, gutting fish at cannery plants, waitressing, putting herself through college earning her tuition herself. Her life has been one of hard knocks and she is a first-class survivor,handling each scenario with grace and aplomb.
One other thing: she has achieved and served in several ways I simply was not aware of and was not brought out in the VP campaign. For example, she held the office of President of the Alaska Mayors association when she was Wasilla mayor. And she also worked for the Governor of Alaska, before her terms in that office, as a liason with the big oil companies. This takes a tough and battle-hardened person of any gender, to stand up among these big moneyed corporations. After the assumption of the Governor's office, she caused changes throughout Alaska by causing more oil development and also initiating a watershed project of bringing natural gas to the lower 48.
Anyway....I'll get down off my soapbox now. Whether she runs for president some day or not, her book is definitely eye-opening.
Monday, November 23, 2009
Herd of elk
Yesterday, we took a drive up to a very small, mountain town. I love eating lunch at the restaurant there, it's a locals' type place and, as I listen to the old-timers sitting around the wood fire talking about the "wind last night" and the blown down trees, I am comfortingly reminded of times during childhood, listening to my Dad as he visited with the "old folks." The squeak of rocking chairs, long pauses between spoken thoughts, the ticking of the mantle clock, a deep-drawn sigh from an old hound dog lying on the twin bed that served as a couch, his head nestled on Uncle Amos' lap.
We'd had a light snow the night before. How exciting for me to notice a herd of cow elk grouped in a circle out in a white hay field. These are wild elk, not held in by fences. I snapped a few pictures, and later asked an old timer about the elk. He said that there are about 400 that winter in the valley.
Saturday, November 21, 2009
Catching up...
I'd thought perhaps the little yearling who rests on the hill behind our house and which can be seen out my guest room window (where I spend much of each day) was the same deer that was struck and killed by a truck down by our mailbox on the road. But yesterday, she was back. So good to see her munching acorns again up under the naked oaks.
I went to see my new neurosurgeon (NSG) on Wednesday. I have been feeling the worst I've felt in a long time, apparently due to the trip to California a couple of weeks ago to see our son. The pain and weakness is so consuming and the oxycodone doesn't always touch it. All I can do is lie in bed and listen to the radio and sleep. Even reading a book, now, seems too much physical work.
Wednesday, the new doctor visit was very emotional for me. It seems at times that NSGs do not always have the best, bedside manner. This one was not the worst I've seen, but to me, it seemed he was brusque, he interrupted me and didn't seem to listen too well or to care a whole lot. I became very emotional with lots of tears running down my cheeks and my nose running. I could not help it!
I wanted to be stoic and strong and speak with him on some semblance of the same intellectual level, but all I could do was sob. This seems to be a long term effect from the post-concussion syndrome I have. I hate it. I am so out of control and I know people are looking at me and making judgments but there is nothing I can do about it.
"New NSG" said that there was nothing surgically he could do for me. I did feel very brushed off, because I know it will take longer than 45 minutes (the time I spent with him) to figure this out. I thought he was giving up on me already, and since I've experienced that a few times already, I reacted as I did.
In the end, the NSG said he'd have his colleagues also look at my imaging. He sent me downstairs for a set of cervical flexion and extension xrays and I am set up for a follow up appointment for Dec. 9.
On Thursday, I was back to feeling so badly, I couldn't move from bed. I just can't describe this pain, wish I could have to the doctor.
On Friday, I tried not drinking coffee, thinking perhaps the caffeine was affecting intracranial pressure and I, in fact, did feel better yesterday. But today, it all came sweeping back again.
Yesterday, the NSG's office called and said he wanted me to be set up for a new lumbar MRI and a "SPECT" scan of the Cspine. I've set those up for Dec. 2, again at OHSU in Portland. I never had heard of a SPECT scan so I looked that up. It's a form of nuclear testing where the patient is injected with some form of chemical and in two and a half hours, an MRI is done. It is supposed to afford a deeper look at things, and I am so hopeful that it does.
Of course, this made me feel much better about new NSG. If I could only have a doctor who WOULD look deeper and would take me on and try to figure out the source of these problems and pain, oh what a gift that would be!
I went to see my new neurosurgeon (NSG) on Wednesday. I have been feeling the worst I've felt in a long time, apparently due to the trip to California a couple of weeks ago to see our son. The pain and weakness is so consuming and the oxycodone doesn't always touch it. All I can do is lie in bed and listen to the radio and sleep. Even reading a book, now, seems too much physical work.
Wednesday, the new doctor visit was very emotional for me. It seems at times that NSGs do not always have the best, bedside manner. This one was not the worst I've seen, but to me, it seemed he was brusque, he interrupted me and didn't seem to listen too well or to care a whole lot. I became very emotional with lots of tears running down my cheeks and my nose running. I could not help it!
I wanted to be stoic and strong and speak with him on some semblance of the same intellectual level, but all I could do was sob. This seems to be a long term effect from the post-concussion syndrome I have. I hate it. I am so out of control and I know people are looking at me and making judgments but there is nothing I can do about it.
"New NSG" said that there was nothing surgically he could do for me. I did feel very brushed off, because I know it will take longer than 45 minutes (the time I spent with him) to figure this out. I thought he was giving up on me already, and since I've experienced that a few times already, I reacted as I did.
In the end, the NSG said he'd have his colleagues also look at my imaging. He sent me downstairs for a set of cervical flexion and extension xrays and I am set up for a follow up appointment for Dec. 9.
On Thursday, I was back to feeling so badly, I couldn't move from bed. I just can't describe this pain, wish I could have to the doctor.
On Friday, I tried not drinking coffee, thinking perhaps the caffeine was affecting intracranial pressure and I, in fact, did feel better yesterday. But today, it all came sweeping back again.
Yesterday, the NSG's office called and said he wanted me to be set up for a new lumbar MRI and a "SPECT" scan of the Cspine. I've set those up for Dec. 2, again at OHSU in Portland. I never had heard of a SPECT scan so I looked that up. It's a form of nuclear testing where the patient is injected with some form of chemical and in two and a half hours, an MRI is done. It is supposed to afford a deeper look at things, and I am so hopeful that it does.
Of course, this made me feel much better about new NSG. If I could only have a doctor who WOULD look deeper and would take me on and try to figure out the source of these problems and pain, oh what a gift that would be!
Monday, November 16, 2009
The way the mind works...
The way my mind, challenged by constant, chronic central pain, works is this:
For most of the time, I hurt in such a deep way, it's nothing I can push past or ignore or even put a nice face on.
But, sometimes, the meds kick in just right and I get a few moments of "no pain." Like today.
I've sure been suffering since getting home from California. I'm not sure I can ever make that trip again. But, this afternoon, my pain meds seemed to be working for about 15 minutes.
When they did, my mind filled with things I'd like to do around the house, but I know enough not to start anything. I know this is a small window of opportunity and I don't want to drag out a bunch of stuff only to feel too poorly to put it all away.
I happened to remember a business I saw advertised down in central Oregon called "Cowgirl Cash." This woman bought and sold used cowboy boots and clothes and such. I remembered all the incredibly beautiful cowgirl shirts hanging in my closet...the ones I used to wear on stage back when I performed cowboy poetry around the West. I thought of the money I could raise selling these colorful, embroidered shirts.
I then looked into the closet and reasoned that I ought to try on the shirts to see if they fit me in any sense. Perhaps I'd wear them again somewhere, if so.
I started trying on shirts and was so happy to see that they all did fit, though some were sure tighter than I'd have liked. If I were to lose a few pounds...and if I were to have surgery one day and were to see improvement, maybe...well, maybe I would dare to think about returning to the stage again. You see, my level of pain was masked enough to allow those fleeting thoughts to cross my mind. Returning to the stage is something I never allow myself to think about, but today, I did.
But only for a few minutes. Then, the deeply seated physical pain came back and the incredible weakness, and it wasn't hard for me to lay that idea aside.
But, I'm still hanging onto the shirts.
For now.
While I was in California, I constantly thought about visiting the ranch where we'd lived and where my old horse, Shadow, still abides. He'd be 18 now. And I was only 13miles away.
But, I also imagined how bad I'd hurt (physically) IF the sight of my old friend caused me to cry really hard. Since that was not hard to imagine happening, I did not allow myself to entertain the idea of going to see him.
As if to affirm my reasoning, while I was there I received an email from the owners of the ranch, and who now own Shadow. They did not know I was in CA that weekend, and had sent me several pictures of him and his owner, with notes about the training they are doing together. Those wounds are somewhat fresh yet. What a silly child I can be, unable to get over this grief of losing horses, and that one Paint horse in particular.
Wednesday this week, I go see the new NSG. I guess I mentioned this yesterday. I do have hopes that this doctor will be able to help me, even if he IS the 6th NSG I have seen.
Some words rolled off my tongue this evening as I spoke to my husband, words I had not said before. I told him of my hopes to become "better" due to something (anything) this neurosurgeon has to offer, because, "It's not going to get better on its own. I know that now. It's been 5 and a half years. Things are simply not going to get better unless something is done."
Today, I had another "autonomic dysreflexia" event. They come every day. I think what prompted this one was the fact that I was wearing sweat pants. All day, I suffered through up-and-down temperature changes. I was either chilled or sweaty all day, putting on a jacket inside the house, or peeling it off in a rush.
I think it was during one of the "over-heated" times that I felt that burning crawl up the back of my neck, the burning "scalp crawl" that seems to set my head on fire, especially over my ears and on the back of the head. The skin on my head felt tight, and I was awash in that familiar weakness and I simply could not stand any clothing on.
By the time I'd peeled off the hot clothing and put on a tank top and shorts and turned on the fan in the office and gotten the BP monitor out of the closet and turned it on and got the cuff on, pumped up the cuff, etc, the reading was down to 130/109. I know it had to have been higher before I took the reading and was on its way back down.
Today, as every day, the swallowing is a tough issue. It is all getting worse. I'm praying for help, an SOS sent from a lonely island.
Yet, as I write this, I am so blessed because my frame of mind is good. I know my blessings, and I know they are so many. I do have an inner peace and happiness and am so thankful that I am not also battling depression.
However, at the same time I write this, I also must be truthful and say that at the times when the pain is the worst, at those times I do hope for the relief and release of death. I'm ready to go. I will not cause it to happen. That is all up to God. Oh, what joy to not fear death. To not be controlled in any way by a fear like that. Definitely, there were times in my life when I did own that fear. But not anymore. And that is a big, big gift in itself.
What an oxymoron I am! What a spiritual conundrum! How can one hurt so much that she wishes for death, yet still be able to say with all honesty and openness that she is not depressed and loves her life? I honestly did not have any comprehension that something like that is possible, never before in my life. But I do now.
and I speak of it here so that you can understand for yourself about loved ones you may know who are the same way...or perhaps yourself. I take no credit for it, it's just a frame of mind and a way of LIFE that came to me NOT of my doing, it's a gift given from God and perhaps that is what is meant when He said, "yea, though I walk through the valley of the shadow of death, I fear no evil, for thou art with me."
when you have your feet planted on the firm foundation of Jesus and you know what comes after this life, it kinda does some neat stuff in your mind and psyche. It all might not make sense to the human-ness of the world, but it makes perfect sense in a Godly way.
Pardon me for working through this as I write. I think I've figured it all out.
It all seems sort of confusing, yet now I've centered on what it is. The Spirit of God through Jesus has long ago been my companion. So, my days are filled with Him and all that He has taught me over these last 30 years.
Momentarily, when during the course of a day I am overcome with a pain so central and deep that I am consumed, I do not curse Him, but I give myself to Him. I yield to the promise of His Gift, the promise He will never leave me, nor forsake me.
How do earthly words describe spiritual, heavenly things? There are these things we cannot understand nor comprehend until we walk down that path. How do you describe the feeling of love, the sensation of love that you have for another human being? Is it even possible, even though the poets have struggled since time began to do so? Better lyricists than I have tried to capture the essence of His Spirit, His Peace.
So, I hope you can "see" what I am trying to write. That, in spite of physical pain or so many stories of grieving, still the sunshine of God's Love makes so many moments in my days beautiful.
It may not make much sense, but it is the way the mind works.
For most of the time, I hurt in such a deep way, it's nothing I can push past or ignore or even put a nice face on.
But, sometimes, the meds kick in just right and I get a few moments of "no pain." Like today.
I've sure been suffering since getting home from California. I'm not sure I can ever make that trip again. But, this afternoon, my pain meds seemed to be working for about 15 minutes.
When they did, my mind filled with things I'd like to do around the house, but I know enough not to start anything. I know this is a small window of opportunity and I don't want to drag out a bunch of stuff only to feel too poorly to put it all away.
I happened to remember a business I saw advertised down in central Oregon called "Cowgirl Cash." This woman bought and sold used cowboy boots and clothes and such. I remembered all the incredibly beautiful cowgirl shirts hanging in my closet...the ones I used to wear on stage back when I performed cowboy poetry around the West. I thought of the money I could raise selling these colorful, embroidered shirts.
I then looked into the closet and reasoned that I ought to try on the shirts to see if they fit me in any sense. Perhaps I'd wear them again somewhere, if so.
I started trying on shirts and was so happy to see that they all did fit, though some were sure tighter than I'd have liked. If I were to lose a few pounds...and if I were to have surgery one day and were to see improvement, maybe...well, maybe I would dare to think about returning to the stage again. You see, my level of pain was masked enough to allow those fleeting thoughts to cross my mind. Returning to the stage is something I never allow myself to think about, but today, I did.
But only for a few minutes. Then, the deeply seated physical pain came back and the incredible weakness, and it wasn't hard for me to lay that idea aside.
But, I'm still hanging onto the shirts.
For now.
While I was in California, I constantly thought about visiting the ranch where we'd lived and where my old horse, Shadow, still abides. He'd be 18 now. And I was only 13miles away.
But, I also imagined how bad I'd hurt (physically) IF the sight of my old friend caused me to cry really hard. Since that was not hard to imagine happening, I did not allow myself to entertain the idea of going to see him.
As if to affirm my reasoning, while I was there I received an email from the owners of the ranch, and who now own Shadow. They did not know I was in CA that weekend, and had sent me several pictures of him and his owner, with notes about the training they are doing together. Those wounds are somewhat fresh yet. What a silly child I can be, unable to get over this grief of losing horses, and that one Paint horse in particular.
Wednesday this week, I go see the new NSG. I guess I mentioned this yesterday. I do have hopes that this doctor will be able to help me, even if he IS the 6th NSG I have seen.
Some words rolled off my tongue this evening as I spoke to my husband, words I had not said before. I told him of my hopes to become "better" due to something (anything) this neurosurgeon has to offer, because, "It's not going to get better on its own. I know that now. It's been 5 and a half years. Things are simply not going to get better unless something is done."
Today, I had another "autonomic dysreflexia" event. They come every day. I think what prompted this one was the fact that I was wearing sweat pants. All day, I suffered through up-and-down temperature changes. I was either chilled or sweaty all day, putting on a jacket inside the house, or peeling it off in a rush.
I think it was during one of the "over-heated" times that I felt that burning crawl up the back of my neck, the burning "scalp crawl" that seems to set my head on fire, especially over my ears and on the back of the head. The skin on my head felt tight, and I was awash in that familiar weakness and I simply could not stand any clothing on.
By the time I'd peeled off the hot clothing and put on a tank top and shorts and turned on the fan in the office and gotten the BP monitor out of the closet and turned it on and got the cuff on, pumped up the cuff, etc, the reading was down to 130/109. I know it had to have been higher before I took the reading and was on its way back down.
Today, as every day, the swallowing is a tough issue. It is all getting worse. I'm praying for help, an SOS sent from a lonely island.
Yet, as I write this, I am so blessed because my frame of mind is good. I know my blessings, and I know they are so many. I do have an inner peace and happiness and am so thankful that I am not also battling depression.
However, at the same time I write this, I also must be truthful and say that at the times when the pain is the worst, at those times I do hope for the relief and release of death. I'm ready to go. I will not cause it to happen. That is all up to God. Oh, what joy to not fear death. To not be controlled in any way by a fear like that. Definitely, there were times in my life when I did own that fear. But not anymore. And that is a big, big gift in itself.
What an oxymoron I am! What a spiritual conundrum! How can one hurt so much that she wishes for death, yet still be able to say with all honesty and openness that she is not depressed and loves her life? I honestly did not have any comprehension that something like that is possible, never before in my life. But I do now.
and I speak of it here so that you can understand for yourself about loved ones you may know who are the same way...or perhaps yourself. I take no credit for it, it's just a frame of mind and a way of LIFE that came to me NOT of my doing, it's a gift given from God and perhaps that is what is meant when He said, "yea, though I walk through the valley of the shadow of death, I fear no evil, for thou art with me."
when you have your feet planted on the firm foundation of Jesus and you know what comes after this life, it kinda does some neat stuff in your mind and psyche. It all might not make sense to the human-ness of the world, but it makes perfect sense in a Godly way.
Pardon me for working through this as I write. I think I've figured it all out.
It all seems sort of confusing, yet now I've centered on what it is. The Spirit of God through Jesus has long ago been my companion. So, my days are filled with Him and all that He has taught me over these last 30 years.
Momentarily, when during the course of a day I am overcome with a pain so central and deep that I am consumed, I do not curse Him, but I give myself to Him. I yield to the promise of His Gift, the promise He will never leave me, nor forsake me.
How do earthly words describe spiritual, heavenly things? There are these things we cannot understand nor comprehend until we walk down that path. How do you describe the feeling of love, the sensation of love that you have for another human being? Is it even possible, even though the poets have struggled since time began to do so? Better lyricists than I have tried to capture the essence of His Spirit, His Peace.
So, I hope you can "see" what I am trying to write. That, in spite of physical pain or so many stories of grieving, still the sunshine of God's Love makes so many moments in my days beautiful.
It may not make much sense, but it is the way the mind works.
Friday, November 13, 2009
just a quick note
I know I should write more. I will soon, I hope.
I was gone for a week, we drove south to visit our son. I wasn't able to see any of my old friends down there, a few of whom read this blog. We were only there 3 days and I felt my strength wan and decrease as each hour went on. I had to ask that we go home sooner than I'd planned, just because of this. I didn't want my son to see me in really bad shape. So, we left early and I was so glad to get home. I spent all day today in bed in a lot of pain. It is so hard to describe how this affects every cell in my body. I can only lie in bed and pray for sleep. I feel better tonight, though, so will go to bed soon with prayers that tomorrow will be better.
I wanted to post about Lyrica. I am going to go off of it. I only got up to the "starting dosage" of 150 mg, but I started to experience some real problems in thinking. Perhaps the Lyrica, mixed with the Cymbalta I take plus the oxycodone, all add up together to give me problems with thinking...or maybe it shouldn't be given to someone with a brain injury. Whatever the situation, I'm going to wean myself off of it. I had a few times when I was awake and struggling with comprehension of where I was in the world. I don't need that!
I hope to post more soon, I have a lot I want to record and share. I am just praying for strength enough to do it. You've probably noticed that I sometimes post a lot. Those are the times I feel pretty good, and want to catch up with lots of thoughts.
Next Wednesday, I'll be in Portland, OR to see the new neurosurgeon at OHSU. I'm trying hard not to allow myself any expectations. But....those "hopes" still come!
thanks for reading!
I was gone for a week, we drove south to visit our son. I wasn't able to see any of my old friends down there, a few of whom read this blog. We were only there 3 days and I felt my strength wan and decrease as each hour went on. I had to ask that we go home sooner than I'd planned, just because of this. I didn't want my son to see me in really bad shape. So, we left early and I was so glad to get home. I spent all day today in bed in a lot of pain. It is so hard to describe how this affects every cell in my body. I can only lie in bed and pray for sleep. I feel better tonight, though, so will go to bed soon with prayers that tomorrow will be better.
I wanted to post about Lyrica. I am going to go off of it. I only got up to the "starting dosage" of 150 mg, but I started to experience some real problems in thinking. Perhaps the Lyrica, mixed with the Cymbalta I take plus the oxycodone, all add up together to give me problems with thinking...or maybe it shouldn't be given to someone with a brain injury. Whatever the situation, I'm going to wean myself off of it. I had a few times when I was awake and struggling with comprehension of where I was in the world. I don't need that!
I hope to post more soon, I have a lot I want to record and share. I am just praying for strength enough to do it. You've probably noticed that I sometimes post a lot. Those are the times I feel pretty good, and want to catch up with lots of thoughts.
Next Wednesday, I'll be in Portland, OR to see the new neurosurgeon at OHSU. I'm trying hard not to allow myself any expectations. But....those "hopes" still come!
thanks for reading!
Tuesday, November 3, 2009
Today's autonomic "event"...
So, as I've written previously, I've been having a lot of symptoms lately that really tell me the compression on my brainstem is increasing.
And I've just discussed dysautonomia and autonomic dysreflexia.
Today, while making our bed, I felt a very deep cold inside the core of my body, while at the same time, I was sweating on my head, above the C1 level of injury. I was not exerting at all at the time...no breath-holding...nothing out of the ordinary.
I've always been a good one to ignore pain and such, and to press on. So, I naturally went ahead with some light vacuuming. Very light, with a very light vac.
I have these episodes quite a bit. In fact, I've recorded some of them here on this blog. So, I immediately recognized that I was having an "autonomic episode." I walked calmly into my office, where I keep my BP "machine" and, slipping on the cuff, I pumped the bulb and waited while the reading came down to the point where it was ready to give me the reading. My normal BP is 120/70.
The reading came up 144/84. I knew this showed that I was indeed having fluctuations in my autonomic system. There was nothing I had been doing that would cause someone without problems or imbalances in the autonomic system to have a spike in BP. As I said, I have these episodes all the time. I can recognize when the symptoms are occurring. A few months ago, while just beginning to make the bed, I felt the old, familiar feeling of my head sweating, pain above the ears, a tight scalp, pilo-erection (hair follicles on end), flushed face, painful scalp "crawl"...so I took my BP and it read at that time 184/152! And that was a couple of minutes after the worst of the symptoms while I set up the BP machine.
So, this reading did not cause me concern, as I'm used to this. But it continues to "prove" that this stuff is going on.
After taking this first reading today, I went back and finished the little bit of vacuuming I was doing (I told you, I'm bullheaded) and then came back in to the office, sat in a resting position, and re-took my BP. This time, it was 137/87, with a pulse of 101, as before. This made sense. Things were evening out.
I turned around to my computer monitor then and for five minutes, I answered a non-emotional email. Out of nowhere, however, I felt that painful scalp crawl, the piloerection, the tightness and pain above each ear. I turned back around to my desk and slipped on the BP cuff that was right there after taking my last reading.
It read 149/91! With a pulse of 94. I have a feeling it had to have been higher before I got hooked up and ready to go with the BP monitor.
Five minutes before, it was 137/87. Five minutes of very calm resting (the reduced pulse showed that)...then the feeling I know oh-so-well...the symptoms that tell me things are wacky in my brainstem, quite frankly. I'm sort of shocked to see my BP has jumped up, just like that...for no obvious reason.
Next, I rested a good 10 minutes of typing emails. And, again, just for a baseline, I took my BP. No further symptoms were happening now. And my BP showed it. In 10 minutes, my BP had dropped to 128/84 and my pulse was 85.
And 30 minutes later, I took it again (just to record that baseline...to also prove to myself the monitor was working correctly) and my BP was pretty normal for me, 127/87, pulse 85 like before.
This all would be bad enough if this were a rare experience, but it happens to me every day, several times throughout the day. It can be brought on by leaning over to fill the dishwasher, or too-tight waistband on a pair of jeans, or allowing myself to experience too much humor or happiness...or witnessing something that might cause me to feel some anxiety, tension or stress (a car crossing lanes in front of us, for instance). Just every-day, common things, like making the bed, can trigger it.
I have no idea how dangerous this is. I mean, for it to be happening this often, every day. There is no cure, all I can do is try to avoid the things that trigger it. Perhaps, if it is caused by my cerebellar tonsils pressing against my brainstem, if THAT was decompressed, maybe these episodes would end? How wonderful that would be!
Until then, I have learned to live with it by God's Grace. It is what it is.
Let's get on with living.
And I've just discussed dysautonomia and autonomic dysreflexia.
Today, while making our bed, I felt a very deep cold inside the core of my body, while at the same time, I was sweating on my head, above the C1 level of injury. I was not exerting at all at the time...no breath-holding...nothing out of the ordinary.
I've always been a good one to ignore pain and such, and to press on. So, I naturally went ahead with some light vacuuming. Very light, with a very light vac.
I have these episodes quite a bit. In fact, I've recorded some of them here on this blog. So, I immediately recognized that I was having an "autonomic episode." I walked calmly into my office, where I keep my BP "machine" and, slipping on the cuff, I pumped the bulb and waited while the reading came down to the point where it was ready to give me the reading. My normal BP is 120/70.
The reading came up 144/84. I knew this showed that I was indeed having fluctuations in my autonomic system. There was nothing I had been doing that would cause someone without problems or imbalances in the autonomic system to have a spike in BP. As I said, I have these episodes all the time. I can recognize when the symptoms are occurring. A few months ago, while just beginning to make the bed, I felt the old, familiar feeling of my head sweating, pain above the ears, a tight scalp, pilo-erection (hair follicles on end), flushed face, painful scalp "crawl"...so I took my BP and it read at that time 184/152! And that was a couple of minutes after the worst of the symptoms while I set up the BP machine.
So, this reading did not cause me concern, as I'm used to this. But it continues to "prove" that this stuff is going on.
After taking this first reading today, I went back and finished the little bit of vacuuming I was doing (I told you, I'm bullheaded) and then came back in to the office, sat in a resting position, and re-took my BP. This time, it was 137/87, with a pulse of 101, as before. This made sense. Things were evening out.
I turned around to my computer monitor then and for five minutes, I answered a non-emotional email. Out of nowhere, however, I felt that painful scalp crawl, the piloerection, the tightness and pain above each ear. I turned back around to my desk and slipped on the BP cuff that was right there after taking my last reading.
It read 149/91! With a pulse of 94. I have a feeling it had to have been higher before I got hooked up and ready to go with the BP monitor.
Five minutes before, it was 137/87. Five minutes of very calm resting (the reduced pulse showed that)...then the feeling I know oh-so-well...the symptoms that tell me things are wacky in my brainstem, quite frankly. I'm sort of shocked to see my BP has jumped up, just like that...for no obvious reason.
Next, I rested a good 10 minutes of typing emails. And, again, just for a baseline, I took my BP. No further symptoms were happening now. And my BP showed it. In 10 minutes, my BP had dropped to 128/84 and my pulse was 85.
And 30 minutes later, I took it again (just to record that baseline...to also prove to myself the monitor was working correctly) and my BP was pretty normal for me, 127/87, pulse 85 like before.
This all would be bad enough if this were a rare experience, but it happens to me every day, several times throughout the day. It can be brought on by leaning over to fill the dishwasher, or too-tight waistband on a pair of jeans, or allowing myself to experience too much humor or happiness...or witnessing something that might cause me to feel some anxiety, tension or stress (a car crossing lanes in front of us, for instance). Just every-day, common things, like making the bed, can trigger it.
I have no idea how dangerous this is. I mean, for it to be happening this often, every day. There is no cure, all I can do is try to avoid the things that trigger it. Perhaps, if it is caused by my cerebellar tonsils pressing against my brainstem, if THAT was decompressed, maybe these episodes would end? How wonderful that would be!
Until then, I have learned to live with it by God's Grace. It is what it is.
Let's get on with living.
Dysautonomia
I was diagnosed with dysautonomia in June, 2009. I was shown where my "acquired chiari" (cerebellar tonsils/herniation) is pressing against my brainstem. It was explained that if I do much activity or get too excited about things, it causes my blood pressure to rise, and that causes even more pressure inside of my head including the cerebral spinal fluid (CSF) and blood. That rise of fluid pressure inside my head causes tissue compression.
Here are some links regarding dysautonomia:
http://en.wikipedia.org/wiki/Dysautonomia
http://www.ndrf.org/ans.html
http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm
Here is an excerpt from another website:
Dysautonomia
The autonomic nervous system is the "automatic" or "unconscious" nervous system. It controls and regulates virtually all of our body functions and systems, such as blood pressure, pulse, body temperature, breathing, sweating, bowel function and sleep patterns. The autonomic nervous system is made up of two parts: the sympathetic nervous system tends to increase and accelerate or speed up body functions, the parasympathetic nervous system tends to slow down, relax, and put the breaks on body functions. In a normal situation, the two divisions of the autonomic nervous system work together to control these functions in a continuous manner reacting normally to stimulus.
When the autonomic nervous system becomes "out of balance," it is similar to a car that needs a tune-up. When this occurs, these body functions may either speed up or slow down at inappropriate times with a very noticeable effect on the person. This may occur for no apparent reason. You may be sitting quietly at home reading or watching television, driving down the highway or shopping for groceries in a store. The autonomic nervous system suddenly decides to send out a burst of signals to speed up all body processes. When this occurs the symptoms may be extremely severe and frightening. This faulty regulation of the autonomic system is referred to as "dysautonomia." It may also occur as a response to stress whether it be emotional or physical. Such things as a severe illness, job stress, family problems, buying or building a house, a move cross country, going off to college, having a child and similar type occurrences in our life may trigger the autonomic system to react inappropriately. While these symptoms are extremely frightening, frustrating and uncomfortable, it is not life threatening. However, if left untreated, it may become lifestyle threatening.
There is also something called Autonomic Dysreflexia.
So, what is Autonomic Dysreflexia?
Most patients who are paraplegics and quadraplegics suffer AD. Here is some information on it...
Mild Dysreflexia:
Sweating. The first sign is usually profuse sweating on the face and neck - that is, above the level of the injury.
Mild Increase in Blood Pressure (Up to 140/90). Since the typical resting blood pressure (BP) for a quadriplegic is 90/60 (which is low normal), even a BP of 120/80 could suggest dysreflexia. Until the blood pressure reaches higher levels, the situation is not urgent, but it is important to try to identify and eliminate the cause before this happens.
Severe Dysreflexia - A Medical Emergency!
Hypertension. When the BP reaches 200/100 or higher, it should be considered an emergency because the sudden change from very low to very high blood pressure can lead to convulsions, stroke, hemorrhage or even death. The BP can rise quickly during an episode of dysreflexia, so it is important to check the BP frequently, at least every 5-10 minutes until the cause has been found and eliminated.
Pounding Headache. The headache is due to the sudden elevation of blood pressure; however, the severity of the headache is not necessarily related to the severity of the hypertension. Therefore, headache is not a reliable indicator of when the BP is dangerously high. A headache associated with normal blood pressure is not due to dysreflexia.
Heart Rate Changes. The heart rate can either be very slow (bradycardia) or very fast (tachycardia) during an episode, so heart rate alone does not help to make the diagnosis.
Flushing (Reddening) of the Face and Neck (above the level of SCI) associated with pale, cold skin on the trunk and extremities (below the SCI).
Less common symptoms include nasal congestion, anxiety, nausea, blurred vision, difficulty breathing, increased spasticity, chest pain and "goose bumps." However, these symptoms alone do not suggest dysreflexia. http://www.spinalcord.ar.gov/Fact%20Sheets%20html/dysreflexia.html
I would be somewhere between mild and severe. My symptoms from this list are: sweating, mild to high increase in blood pressure; heart rate changes; flushing; nasal congestion; anxiety; nausea; blurred vision; difficulty breathing; goose bumps.
Another site mentions "pilo-erection," the painful feeling on the scalp as the hair follicles go erect. If I brush against my hair at those times, it is quite painful.
What's the difference between the two, Dysautonomia and Autonomic Dysreflexia?
Well, I'm not sure. What I've read describes the former as being an out of balance autonomic system. Certain connective tissue diseases, like Marfans, Ehlers Danlos Syndrome and POTS are included as causes for Dysautonomia. Along with brain injury.
The AD, the causes are more trauma-related, and information explains that it is an interruption in the signals that are flowing up and down the spinal cord.
So, I think the two are at times related and have things in common...but at other times, you cannot simply substitute one for the other. I haven't seen anyone who seems to care enough to listen to figure this out for me. Oh, the nice neurologist who told me I have dysautonomia seemed to listen, and he did show me how the cerebellar tonsils are compressing the brainstem on my MRIs, BUT...I wasn't exactly sure that he understood what the AD was...and how that might relate to me.
Most of the time, I would say that it is AD that I suffer from.
My next post will explain why I was researching this out today...
but certainly, the episode I experienced today would fall right into line with the increased brainstem compression symptoms I've been having lately...
and perhaps...it really doesn't matter.
Again...I don't know. Someone knows out there. Some brilliant neurosurgeon who cares enough to listen to me and dig deeper and listen longer and care enough...
I haven't met him yet, though.
Here are some links regarding dysautonomia:
http://en.wikipedia.org/wiki/Dysautonomia
http://www.ndrf.org/ans.html
http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm
Here is an excerpt from another website:
Dysautonomia
The autonomic nervous system is the "automatic" or "unconscious" nervous system. It controls and regulates virtually all of our body functions and systems, such as blood pressure, pulse, body temperature, breathing, sweating, bowel function and sleep patterns. The autonomic nervous system is made up of two parts: the sympathetic nervous system tends to increase and accelerate or speed up body functions, the parasympathetic nervous system tends to slow down, relax, and put the breaks on body functions. In a normal situation, the two divisions of the autonomic nervous system work together to control these functions in a continuous manner reacting normally to stimulus.
When the autonomic nervous system becomes "out of balance," it is similar to a car that needs a tune-up. When this occurs, these body functions may either speed up or slow down at inappropriate times with a very noticeable effect on the person. This may occur for no apparent reason. You may be sitting quietly at home reading or watching television, driving down the highway or shopping for groceries in a store. The autonomic nervous system suddenly decides to send out a burst of signals to speed up all body processes. When this occurs the symptoms may be extremely severe and frightening. This faulty regulation of the autonomic system is referred to as "dysautonomia." It may also occur as a response to stress whether it be emotional or physical. Such things as a severe illness, job stress, family problems, buying or building a house, a move cross country, going off to college, having a child and similar type occurrences in our life may trigger the autonomic system to react inappropriately. While these symptoms are extremely frightening, frustrating and uncomfortable, it is not life threatening. However, if left untreated, it may become lifestyle threatening.
There is also something called Autonomic Dysreflexia.
So, what is Autonomic Dysreflexia?
Most patients who are paraplegics and quadraplegics suffer AD. Here is some information on it...
Mild Dysreflexia:
Sweating. The first sign is usually profuse sweating on the face and neck - that is, above the level of the injury.
Mild Increase in Blood Pressure (Up to 140/90). Since the typical resting blood pressure (BP) for a quadriplegic is 90/60 (which is low normal), even a BP of 120/80 could suggest dysreflexia. Until the blood pressure reaches higher levels, the situation is not urgent, but it is important to try to identify and eliminate the cause before this happens.
Severe Dysreflexia - A Medical Emergency!
Hypertension. When the BP reaches 200/100 or higher, it should be considered an emergency because the sudden change from very low to very high blood pressure can lead to convulsions, stroke, hemorrhage or even death. The BP can rise quickly during an episode of dysreflexia, so it is important to check the BP frequently, at least every 5-10 minutes until the cause has been found and eliminated.
Pounding Headache. The headache is due to the sudden elevation of blood pressure; however, the severity of the headache is not necessarily related to the severity of the hypertension. Therefore, headache is not a reliable indicator of when the BP is dangerously high. A headache associated with normal blood pressure is not due to dysreflexia.
Heart Rate Changes. The heart rate can either be very slow (bradycardia) or very fast (tachycardia) during an episode, so heart rate alone does not help to make the diagnosis.
Flushing (Reddening) of the Face and Neck (above the level of SCI) associated with pale, cold skin on the trunk and extremities (below the SCI).
Less common symptoms include nasal congestion, anxiety, nausea, blurred vision, difficulty breathing, increased spasticity, chest pain and "goose bumps." However, these symptoms alone do not suggest dysreflexia. http://www.spinalcord.ar.gov/Fact%20Sheets%20html/dysreflexia.html
I would be somewhere between mild and severe. My symptoms from this list are: sweating, mild to high increase in blood pressure; heart rate changes; flushing; nasal congestion; anxiety; nausea; blurred vision; difficulty breathing; goose bumps.
Another site mentions "pilo-erection," the painful feeling on the scalp as the hair follicles go erect. If I brush against my hair at those times, it is quite painful.
What's the difference between the two, Dysautonomia and Autonomic Dysreflexia?
Well, I'm not sure. What I've read describes the former as being an out of balance autonomic system. Certain connective tissue diseases, like Marfans, Ehlers Danlos Syndrome and POTS are included as causes for Dysautonomia. Along with brain injury.
The AD, the causes are more trauma-related, and information explains that it is an interruption in the signals that are flowing up and down the spinal cord.
So, I think the two are at times related and have things in common...but at other times, you cannot simply substitute one for the other. I haven't seen anyone who seems to care enough to listen to figure this out for me. Oh, the nice neurologist who told me I have dysautonomia seemed to listen, and he did show me how the cerebellar tonsils are compressing the brainstem on my MRIs, BUT...I wasn't exactly sure that he understood what the AD was...and how that might relate to me.
Most of the time, I would say that it is AD that I suffer from.
My next post will explain why I was researching this out today...
but certainly, the episode I experienced today would fall right into line with the increased brainstem compression symptoms I've been having lately...
and perhaps...it really doesn't matter.
Again...I don't know. Someone knows out there. Some brilliant neurosurgeon who cares enough to listen to me and dig deeper and listen longer and care enough...
I haven't met him yet, though.
Monday, November 2, 2009
God's Grace and living with this instability!
Last night, lying in bed, I could feel every millimeter along the edge of the back of my skull, stretching from ear to ear. Like a big smiley face painted on the back of my head, this etching revealed itself in precisely-located pain.
And I know what I did...and I know the price is too high to pay, even for time spent in those woods that beckon me in those wiley whispers too hard to resist.
I've now been "upped" to 150 mgs of Lyrica, which I take at bedtime. This is not a high dose; it is, in fact, the starting dosage recommended. It seems to work to a small degree, but I'll take any improvement I can get!
Feeling a little better, on Saturday I snapped the leashes on the dogs and walked slowly down the woodsey trail, stopping at one point to lie in the sun on warm pine needles and watch a crow fly overhead. The dogs looked at me curiously, as if to question what was wrong that I would stop in the midst of a walk to recline upon a carpet of pine needles; once they were sure I was fine, they also laid down at my side though Mickey stayed alert and watched the woods, his wariness producing a regal posture, indeed.
Mickey is not yet well-trained to the leash and he is still young. So, I must gently jerk the choke chain back in order to remind him to stay beside me, or behind me if the trail is narrow. I KNOW that this action with my arm is NOT good for my skull base. Though it's not too uncomfortable at the time I do it, I know it is kinetically affecting the nerves in my upper C-spine...but I do it just the same. They are small jerks, not even "jerks" really. And remind me of the gentle tugs on the reins I'd given snaffle bit horses for most of my life. Such thoughts cause slight smiles to cross my face, and that feels good.
Sunday was another sunny, Autumn day, and I succumbed once again. Two days in a row. Yes, I succumbed and went the 15 minute loop through the oaks and Ponderosa Pine, needles and cones and wet leaves beneath my shoes.
Sunday night....the bill came.
Last week, I had a couple of episodes that surpassed the normal swallowing difficulties I experience. In one, I was eating, absent-mindedly, some Triscuits. Watching TV and breaking off little bites and putting those into my mouth, I failed to notice that the food wasn't going "down."
As I've written here before, one bite of food will usually move the previous bite on down the esophagus, but this time, it was all bunched up at the back of my mouth. Without a gag reflex, I was not choking or gagging and was completely oblivious to the accumulation of food, perhaps the equivalent of one and a half crackers.
By the time I became aware of it, it was a wet bolus of chewed-up cracker that was in the neverland between my mouth and the top of my esophagus (forgive me of there is a medical term for this area!). I could not swallow it, and I could not easily make it come back into my mouth. (for the squeamish, I apologize).
I was afraid to try to cough it back up, for fear that I would set off a spasm I could not control. I found that I could not breathe through my mouth and that caused a bit of anxiety, as nose-breathing wasn't doing too well, either. I got a little bit of water, and took tiny sips of it, which, thank God, started the food moving downward, a little bit at a time.
I could feel every bit of its journey south.
On Saturday, I aspirated. I have not done this in a long time. I was eating a small bit of licorice and when I swallowed, it went "the wrong way." We all know what that feels like! I did cough with this situation, coughing and coughing until I felt like I had coughed up whatever was possible to retrieve.
Aspiration is serious stuff. They say this is the #1 cause of death in stroke patients. Due to their brain injury, they also have difficulty swallowing, and some end up aspirating fluid into the lungs and develop pneumonia, which is becomes fatal. With no gag reflex, this is something I need to be on guard against. But whoever is 100% aware of the food they are eating and fluids they are swallowing 100% of the time?
Then, Sunday night. Last night, after the walk in the woods, which left me in so much painful weakness I was a blob in the recliner until the pain meds kicked in, I started noticing food was not "going down." Late in the evening, after taking the tiny oxycodone pill, it was lodged at the top of the esophagus, and wasn't going anywhere. I tried drinking water but that wasn't helping. I thought to take a small piece of bread or something to try to move the pill on down, but I was out of options. I knew the food wouldn't go down either. Finally, I (futilely, I mistakenly thought) took a little sip of water and that moved the pill south. I was able to go to bed, but as I wrote at the start of this post, I was SO hurting around the whole back-edge of my skull. After an hour, I finally did fall asleep.
1) This is brainstem stuff. No gag reflex. Swallowing problems like this. Having to sleep with a portable fan about 10" away from my face so it blows air into my open mouth and will keep me breathing all night.... I've continued to have this sore throat (since my injury...a long time!) but it is so much worse with talking. And I feel "sticking" of my diaphragm, but that has been a long-time complaint, as well.
2) If I feel up to walking in the woods again, I need to wear my CTO. I'm ashamed to say that I did not wear it because I can't handle a walking stick AND dog leashes, and with a CTO, I absolutely need a walking stick to feel my way so I don't take a tumble. This is just a deer trail with lots of limbs to step over, rocks in the trail, etc. I know falling would be disastrous for me. But, I need to be firm with myself about this: CTO if I go for walks! Even if it means I don't get the little endorphins from working with the dogs and being a trainer again.
God's Grace. The Bible tells us that the Lord gives us all the grace necessary in our time of need. We are told "His Grace is sufficient for us." And I believe this is true. I got to see it first-hand the other day...
I was talking to my Mom on the phone. And explaining to her again about how I have to be careful to control my emotions, to not allow myself to get "riled up," or too excited, or too happy, any sort of "high" emotion, because when I do, as I've written here before, I get very distinct symptoms including a jump in blood pressure which causes a flushed feeling all over my head, a painful "pilo-erection" of my scalp-hair follicles, sweating above the C1 level and over all painful weakness.
She commented, "How sad that you cannot allow yourself to feel exuberant joy!" and I truthfully replie, "Oh, that's okay, Mom. By this time, I've come to accept this as just the way things are. I have learned to deal with it as best I can."
I had my last phone interview with one of my work comp medical examiners, and this time it was the neuropsychologist. He asked, "Are you depressed? Do you feel sad when you think about your situation?"
And I honestly answered, "Is there a difference between emotionalism and depression? Because I do not feel depressed. I am very happy with my home and my life and my wonderful life partner/husband and the woods and scenery that surrounds us. I feel my blessings are abundant! But I do get emotional and even cry when I think about certain things, like my horse I left in California because I am too weak and sick to ride or care for him."
The doc said that he did feel there is a difference between depression and emotionalism. Maybe he was just being kind.
But I feel that this is all a sign, to me, of God's Grace at work. He has given me the Grace to accept things as they are, He has given me the strength to not be burdened with self-pity. If I can handle some of this with a smile, then it's all due to Him.
Every day that I am able to venture out of the yard to town, and I am wearing the CTO vest (which is every time I leave the yard), I must reply to various comments from the friendly folks in our town. Today, I heard from a passerby, "That musta hurt!"
I just smiled and said, "It was a long time ago."
And I know what I did...and I know the price is too high to pay, even for time spent in those woods that beckon me in those wiley whispers too hard to resist.
I've now been "upped" to 150 mgs of Lyrica, which I take at bedtime. This is not a high dose; it is, in fact, the starting dosage recommended. It seems to work to a small degree, but I'll take any improvement I can get!
Feeling a little better, on Saturday I snapped the leashes on the dogs and walked slowly down the woodsey trail, stopping at one point to lie in the sun on warm pine needles and watch a crow fly overhead. The dogs looked at me curiously, as if to question what was wrong that I would stop in the midst of a walk to recline upon a carpet of pine needles; once they were sure I was fine, they also laid down at my side though Mickey stayed alert and watched the woods, his wariness producing a regal posture, indeed.
Mickey is not yet well-trained to the leash and he is still young. So, I must gently jerk the choke chain back in order to remind him to stay beside me, or behind me if the trail is narrow. I KNOW that this action with my arm is NOT good for my skull base. Though it's not too uncomfortable at the time I do it, I know it is kinetically affecting the nerves in my upper C-spine...but I do it just the same. They are small jerks, not even "jerks" really. And remind me of the gentle tugs on the reins I'd given snaffle bit horses for most of my life. Such thoughts cause slight smiles to cross my face, and that feels good.
Sunday was another sunny, Autumn day, and I succumbed once again. Two days in a row. Yes, I succumbed and went the 15 minute loop through the oaks and Ponderosa Pine, needles and cones and wet leaves beneath my shoes.
Sunday night....the bill came.
Last week, I had a couple of episodes that surpassed the normal swallowing difficulties I experience. In one, I was eating, absent-mindedly, some Triscuits. Watching TV and breaking off little bites and putting those into my mouth, I failed to notice that the food wasn't going "down."
As I've written here before, one bite of food will usually move the previous bite on down the esophagus, but this time, it was all bunched up at the back of my mouth. Without a gag reflex, I was not choking or gagging and was completely oblivious to the accumulation of food, perhaps the equivalent of one and a half crackers.
By the time I became aware of it, it was a wet bolus of chewed-up cracker that was in the neverland between my mouth and the top of my esophagus (forgive me of there is a medical term for this area!). I could not swallow it, and I could not easily make it come back into my mouth. (for the squeamish, I apologize).
I was afraid to try to cough it back up, for fear that I would set off a spasm I could not control. I found that I could not breathe through my mouth and that caused a bit of anxiety, as nose-breathing wasn't doing too well, either. I got a little bit of water, and took tiny sips of it, which, thank God, started the food moving downward, a little bit at a time.
I could feel every bit of its journey south.
On Saturday, I aspirated. I have not done this in a long time. I was eating a small bit of licorice and when I swallowed, it went "the wrong way." We all know what that feels like! I did cough with this situation, coughing and coughing until I felt like I had coughed up whatever was possible to retrieve.
Aspiration is serious stuff. They say this is the #1 cause of death in stroke patients. Due to their brain injury, they also have difficulty swallowing, and some end up aspirating fluid into the lungs and develop pneumonia, which is becomes fatal. With no gag reflex, this is something I need to be on guard against. But whoever is 100% aware of the food they are eating and fluids they are swallowing 100% of the time?
Then, Sunday night. Last night, after the walk in the woods, which left me in so much painful weakness I was a blob in the recliner until the pain meds kicked in, I started noticing food was not "going down." Late in the evening, after taking the tiny oxycodone pill, it was lodged at the top of the esophagus, and wasn't going anywhere. I tried drinking water but that wasn't helping. I thought to take a small piece of bread or something to try to move the pill on down, but I was out of options. I knew the food wouldn't go down either. Finally, I (futilely, I mistakenly thought) took a little sip of water and that moved the pill south. I was able to go to bed, but as I wrote at the start of this post, I was SO hurting around the whole back-edge of my skull. After an hour, I finally did fall asleep.
1) This is brainstem stuff. No gag reflex. Swallowing problems like this. Having to sleep with a portable fan about 10" away from my face so it blows air into my open mouth and will keep me breathing all night.... I've continued to have this sore throat (since my injury...a long time!) but it is so much worse with talking. And I feel "sticking" of my diaphragm, but that has been a long-time complaint, as well.
2) If I feel up to walking in the woods again, I need to wear my CTO. I'm ashamed to say that I did not wear it because I can't handle a walking stick AND dog leashes, and with a CTO, I absolutely need a walking stick to feel my way so I don't take a tumble. This is just a deer trail with lots of limbs to step over, rocks in the trail, etc. I know falling would be disastrous for me. But, I need to be firm with myself about this: CTO if I go for walks! Even if it means I don't get the little endorphins from working with the dogs and being a trainer again.
God's Grace. The Bible tells us that the Lord gives us all the grace necessary in our time of need. We are told "His Grace is sufficient for us." And I believe this is true. I got to see it first-hand the other day...
I was talking to my Mom on the phone. And explaining to her again about how I have to be careful to control my emotions, to not allow myself to get "riled up," or too excited, or too happy, any sort of "high" emotion, because when I do, as I've written here before, I get very distinct symptoms including a jump in blood pressure which causes a flushed feeling all over my head, a painful "pilo-erection" of my scalp-hair follicles, sweating above the C1 level and over all painful weakness.
She commented, "How sad that you cannot allow yourself to feel exuberant joy!" and I truthfully replie, "Oh, that's okay, Mom. By this time, I've come to accept this as just the way things are. I have learned to deal with it as best I can."
I had my last phone interview with one of my work comp medical examiners, and this time it was the neuropsychologist. He asked, "Are you depressed? Do you feel sad when you think about your situation?"
And I honestly answered, "Is there a difference between emotionalism and depression? Because I do not feel depressed. I am very happy with my home and my life and my wonderful life partner/husband and the woods and scenery that surrounds us. I feel my blessings are abundant! But I do get emotional and even cry when I think about certain things, like my horse I left in California because I am too weak and sick to ride or care for him."
The doc said that he did feel there is a difference between depression and emotionalism. Maybe he was just being kind.
But I feel that this is all a sign, to me, of God's Grace at work. He has given me the Grace to accept things as they are, He has given me the strength to not be burdened with self-pity. If I can handle some of this with a smile, then it's all due to Him.
Every day that I am able to venture out of the yard to town, and I am wearing the CTO vest (which is every time I leave the yard), I must reply to various comments from the friendly folks in our town. Today, I heard from a passerby, "That musta hurt!"
I just smiled and said, "It was a long time ago."
Monday, October 26, 2009
Update on Lyrica and new doctor
The Lyrica is working very well! I am taking only 100 mg, at bedtime, and am sleeping great. No bad dreams, and I don't feel too "druggy" when I wake up. It seems to help the oxycodone to be more effective...somehow.
The other thing that I noticed is that the Lyrica seems to have the most effect on the tethered cord symptoms (below the waist). It is very helpful for that. I am still very weak, and if I start to walk or "do" much, I feel the TC pain. But just sitting, resting, lying down, the TC pain seems alot more controlled.
I still have to take the 5 or 6 doses of 5 mg oxycodone throughout the day, however, for the continued pain at the back of my head. (I am going to get an appt. this week, I think, to ask my primary to up my dosage on the Lyrica since I am still below the recommended starting-dose).
That back-of-the-head pain, in fact, seems to have amped up. I do not know exactly what that pain is from. I think I've written that the pain is higher than the occipital pain (under the bottom of the skull in back) that I also have. There is a strong pain that is higher, middle of the skull but just to the right of center, that haunts my days and cause me to spend hours each day with ice paks under my head.
It seems to fade in, get strong for a few seconds, then fade out...coming and going, a slow "pulse." I don't know what this pain is. I know from my MRIs that one of my cerebellar tonsils is pressing right up against the brainstem and that is on the right side (of course, posterior or "in back" of the brainstem). So, I don't know if this pain is from that pressing...or the blockage of CSF flow that that tonsil causes...I just don't know. I DO know it is too high to be the C1.
The pain I feel "sub-occipitally" IS from the C1, I think. I always have a very tender spot right in the center. You know...if you feel the back of your neck/head and you can feel those two tendons going up to the back of your skull and you can feel a deeper spot right in the middle. THAT is "sub occipital" which also is right where the back of the C1 is.
I remember when I broke my neck, I never thought that the neck, or cervical spine, went way "up there." I thought of my neck as just being what I saw from the front, under my jaw down to my shoulders. It never had dawned on me that the c-spine actually extends way up to the back of the skull!
I was lying in the hospital bed and my lackadaisical neurosurgeon (and my concerned husband) were at my bedside. My NS was telling me that it would take a long time, but I'd "be fine." I did not need surgery, he told me. In my drug-induced cloud of a mind, I was surely happy that I did not need a surgery (so I was told) nor a halo. That I could go home in the little collar he'd given me and in a month, I'd be "fine."
Right at that time, I told the NS that I hurting so badly at the back of my head that I was sure I was bleeding there. He scoffed at that. "No, you are not bleeding back there!" he said.
I demanded he put his finger back there and see if there was blood, it was hurting so badly. He did, and when his finger just touched that "spot" that I just described as being that deeper "hole" under the skull that you feel when you touch that area, I YOWLED with pain and yelled at him to take his finger away! Just that light touch was incredibly painful.
He didn't explain why it was hurting nor what it was, but later, through research online, I learned that that is the area you find the C1.
And today, 5.5 years later, I still have tenderness in that spot. It can be very tender, or just mildly so. Perhaps it is affected by times when my central nervous system is riled up. When the higher-up pain is slowly pulsing, that is when that deep spot is the most tender. If I touch it, I "feel" it. If I were to scrape it a bit with my finger nail (which I really avoid doing), I would YOWL with pain again just like I did right after my injury. Why it is so painful still is something I'd love to know...but one never, ever goes in to see a neurosurgeon and has enough time to ask such trivial questions.
I have an appointment with the new NS.
After being brushed off as being "spontaneously healed" by my NS of 3 years in NY, AND after being told there was nothing he could do for me by Dr. Henderson in MD (he said this on a phone message a week before I was to fly there for a consult. He'd never actually seen me when he offered this opinion, for whatever reason), I was rendered "neurosurgeonless."
My psyche was so jaded that I said I'd never go see a NS again. I expected to live with this the rest of my life, perhaps 30 more years.
BUT, my primary felt I needed to have someone "in charge of my neck." And then my work comp medical examiner also felt that it was strange I didn't have a NS to manage my care. So, my primary sent a request for a NS to the OHSU (Oregon Health and Sciences University) neurosurgical division.
How it works, I learned, is that the OHSU NS dept. (forgive my abbreviations, my hands and neck and brain are tiring) has many NS's there. They receive the initial request from my primary, they look it over and delegate it to one of their doctors.
I don't believe they received very much of my file. I believe it is a simple form that is filled out on my primary's part. There are 2 "skull base" experts in this department, and I expected I would be assigned to one of them. But I was not.
I have an appointment with Dr. Brian Ragal on Nov. 18. From his brief resume online, I do not really see any expertise in the area I am having problems with. But, I firmly feel God is in control of all of this, and who I see is up to Him.
I also am not going there with any expectations or Hope at all. I have seen the LORD allow me to go 3000 miles away, have a tethered spinal cord surgery, have nothing done for the instability of my skull base area, I've cried really hard many times over disappointment, including the cancellation of my appt. in Bethesda in September (such deep and painful disappointment to be cancelled without even being seen), that I am not going to allow myself to go to the place of Hope ever again.
I'm not going to build up Hope about being understood, being "fixed," or anything at this time. I hate the idea of going there and having to talk so much about my situation and what has happened and what I am experiencing, etc. I'm tired of talking about it, and talking causes me pain in the throat. But...it seems God has set this all up, it's not anything I have sought...so perhaps that IS the idea, isn't it. That God works when we give up and let Him do the "doing." I don't know.
I'll let you know.
The other thing that I noticed is that the Lyrica seems to have the most effect on the tethered cord symptoms (below the waist). It is very helpful for that. I am still very weak, and if I start to walk or "do" much, I feel the TC pain. But just sitting, resting, lying down, the TC pain seems alot more controlled.
I still have to take the 5 or 6 doses of 5 mg oxycodone throughout the day, however, for the continued pain at the back of my head. (I am going to get an appt. this week, I think, to ask my primary to up my dosage on the Lyrica since I am still below the recommended starting-dose).
That back-of-the-head pain, in fact, seems to have amped up. I do not know exactly what that pain is from. I think I've written that the pain is higher than the occipital pain (under the bottom of the skull in back) that I also have. There is a strong pain that is higher, middle of the skull but just to the right of center, that haunts my days and cause me to spend hours each day with ice paks under my head.
It seems to fade in, get strong for a few seconds, then fade out...coming and going, a slow "pulse." I don't know what this pain is. I know from my MRIs that one of my cerebellar tonsils is pressing right up against the brainstem and that is on the right side (of course, posterior or "in back" of the brainstem). So, I don't know if this pain is from that pressing...or the blockage of CSF flow that that tonsil causes...I just don't know. I DO know it is too high to be the C1.
The pain I feel "sub-occipitally" IS from the C1, I think. I always have a very tender spot right in the center. You know...if you feel the back of your neck/head and you can feel those two tendons going up to the back of your skull and you can feel a deeper spot right in the middle. THAT is "sub occipital" which also is right where the back of the C1 is.
I remember when I broke my neck, I never thought that the neck, or cervical spine, went way "up there." I thought of my neck as just being what I saw from the front, under my jaw down to my shoulders. It never had dawned on me that the c-spine actually extends way up to the back of the skull!
I was lying in the hospital bed and my lackadaisical neurosurgeon (and my concerned husband) were at my bedside. My NS was telling me that it would take a long time, but I'd "be fine." I did not need surgery, he told me. In my drug-induced cloud of a mind, I was surely happy that I did not need a surgery (so I was told) nor a halo. That I could go home in the little collar he'd given me and in a month, I'd be "fine."
Right at that time, I told the NS that I hurting so badly at the back of my head that I was sure I was bleeding there. He scoffed at that. "No, you are not bleeding back there!" he said.
I demanded he put his finger back there and see if there was blood, it was hurting so badly. He did, and when his finger just touched that "spot" that I just described as being that deeper "hole" under the skull that you feel when you touch that area, I YOWLED with pain and yelled at him to take his finger away! Just that light touch was incredibly painful.
He didn't explain why it was hurting nor what it was, but later, through research online, I learned that that is the area you find the C1.
And today, 5.5 years later, I still have tenderness in that spot. It can be very tender, or just mildly so. Perhaps it is affected by times when my central nervous system is riled up. When the higher-up pain is slowly pulsing, that is when that deep spot is the most tender. If I touch it, I "feel" it. If I were to scrape it a bit with my finger nail (which I really avoid doing), I would YOWL with pain again just like I did right after my injury. Why it is so painful still is something I'd love to know...but one never, ever goes in to see a neurosurgeon and has enough time to ask such trivial questions.
I have an appointment with the new NS.
After being brushed off as being "spontaneously healed" by my NS of 3 years in NY, AND after being told there was nothing he could do for me by Dr. Henderson in MD (he said this on a phone message a week before I was to fly there for a consult. He'd never actually seen me when he offered this opinion, for whatever reason), I was rendered "neurosurgeonless."
My psyche was so jaded that I said I'd never go see a NS again. I expected to live with this the rest of my life, perhaps 30 more years.
BUT, my primary felt I needed to have someone "in charge of my neck." And then my work comp medical examiner also felt that it was strange I didn't have a NS to manage my care. So, my primary sent a request for a NS to the OHSU (Oregon Health and Sciences University) neurosurgical division.
How it works, I learned, is that the OHSU NS dept. (forgive my abbreviations, my hands and neck and brain are tiring) has many NS's there. They receive the initial request from my primary, they look it over and delegate it to one of their doctors.
I don't believe they received very much of my file. I believe it is a simple form that is filled out on my primary's part. There are 2 "skull base" experts in this department, and I expected I would be assigned to one of them. But I was not.
I have an appointment with Dr. Brian Ragal on Nov. 18. From his brief resume online, I do not really see any expertise in the area I am having problems with. But, I firmly feel God is in control of all of this, and who I see is up to Him.
I also am not going there with any expectations or Hope at all. I have seen the LORD allow me to go 3000 miles away, have a tethered spinal cord surgery, have nothing done for the instability of my skull base area, I've cried really hard many times over disappointment, including the cancellation of my appt. in Bethesda in September (such deep and painful disappointment to be cancelled without even being seen), that I am not going to allow myself to go to the place of Hope ever again.
I'm not going to build up Hope about being understood, being "fixed," or anything at this time. I hate the idea of going there and having to talk so much about my situation and what has happened and what I am experiencing, etc. I'm tired of talking about it, and talking causes me pain in the throat. But...it seems God has set this all up, it's not anything I have sought...so perhaps that IS the idea, isn't it. That God works when we give up and let Him do the "doing." I don't know.
I'll let you know.
Tuesday, October 20, 2009
I look to find the doe on the hill...
I just looked thru the slats of the blinds at the window in my "rest room" (as opposed to what it is supposed to be, a "guest room") to see if the little doe is resting herself, under the oaks. I strained to see her silhouette, waiting for my eyes to adjust to the brighter sunlight, the constant color of dried grasses on the ground and orange leaves on the trees. I don't see her.
I relate to her, my weakness is outwardly personified in her body. My elderly neighbor called yesterday and we visited about the little deer. My neighbor looks, with a ranch woman's eyes, at the legs of the doe and notices a large lump on one leg, a leg she "stands on but favors," according to Esther.
I easily imagine that the little, crippled doe embodies Esther's own feelings of increasing debilitation, for, at 83 and counting, the once-rowdy, vibrant cowgirl is but a dim memory of her former self.
I'd been doing well on the Lyrica, so well, I was surprised. Day before yesterday, I even walked across the road to the Ponderosa-filled, little canyon which has been seductively calling to me every day since I have lived here. I took the dogs and we saw the local flock of turkeys, who ground-flew away from us at first, nervous sight of our perceived predatory presence.
Yesterday morning, I felt "like a million bucks." Like my normal self, almost.
I've been taking about half the amount of pain killers since I take them only PRN, "as needed."
But this morning, it all crashed down and again, every cell in my body pained in such a way that I ended up back in bed in the guest/rest room and waited for the oxycodone to take the edge off the episode.
All morning, I've noticed I've been stopping breathing. In other words, my brain is not signally my body to breathe automatically and when I stop thinking about it...I stop breathing. I become aware that I've not taken up the inhalation, then purse my lips to draw in sweet breath of life.
It was a grand few days!
I knew this might happen. I remember the sweet release of morphine in MSContin for about a week, then it seemed to lose its effectiveness.
With spinal cord/central nervous system damage and issues, this is the sport we're involved in. The meds can mask the pain, which then allows us to do more, to give in to siren calls, and then, payback comes no matter the medications. Because the damage is always there, lurking lesions on the cord that never go away and can only be hidden for brief interludes.
When the meds kick in, I get up and move about a little. Most of the time, this helps but when it's really bad, like today, movement makes it worse.
Perhaps the little doe got hit by a car...suffered spinal cord damage herself. Rests when she must, stands up and walks a little when she is restless...she is in as good a place as she can be, surrounded by acorns. Perhaps I'll ask Pete to take her a bucket of water.
I relate to her, my weakness is outwardly personified in her body. My elderly neighbor called yesterday and we visited about the little deer. My neighbor looks, with a ranch woman's eyes, at the legs of the doe and notices a large lump on one leg, a leg she "stands on but favors," according to Esther.
I easily imagine that the little, crippled doe embodies Esther's own feelings of increasing debilitation, for, at 83 and counting, the once-rowdy, vibrant cowgirl is but a dim memory of her former self.
I'd been doing well on the Lyrica, so well, I was surprised. Day before yesterday, I even walked across the road to the Ponderosa-filled, little canyon which has been seductively calling to me every day since I have lived here. I took the dogs and we saw the local flock of turkeys, who ground-flew away from us at first, nervous sight of our perceived predatory presence.
Yesterday morning, I felt "like a million bucks." Like my normal self, almost.
I've been taking about half the amount of pain killers since I take them only PRN, "as needed."
But this morning, it all crashed down and again, every cell in my body pained in such a way that I ended up back in bed in the guest/rest room and waited for the oxycodone to take the edge off the episode.
All morning, I've noticed I've been stopping breathing. In other words, my brain is not signally my body to breathe automatically and when I stop thinking about it...I stop breathing. I become aware that I've not taken up the inhalation, then purse my lips to draw in sweet breath of life.
It was a grand few days!
I knew this might happen. I remember the sweet release of morphine in MSContin for about a week, then it seemed to lose its effectiveness.
With spinal cord/central nervous system damage and issues, this is the sport we're involved in. The meds can mask the pain, which then allows us to do more, to give in to siren calls, and then, payback comes no matter the medications. Because the damage is always there, lurking lesions on the cord that never go away and can only be hidden for brief interludes.
When the meds kick in, I get up and move about a little. Most of the time, this helps but when it's really bad, like today, movement makes it worse.
Perhaps the little doe got hit by a car...suffered spinal cord damage herself. Rests when she must, stands up and walks a little when she is restless...she is in as good a place as she can be, surrounded by acorns. Perhaps I'll ask Pete to take her a bucket of water.
Monday, October 19, 2009
The dog lets me know...
The dog lets me know that the yearling deer is once again on the hill behind our house, nuzzling for acorns under the rusty-haired oaks.
This, of course, is not the same yearling I wrote about last Fall and Winter. This is 2008's fawn, pushed out by Mom so she can raise her newest baby.
I've seen this one in the front yard, drinking from the birdbath. I noticed the petunias and geraniums, the leaves of the frosted cherry-tomato plants and the wide leaves of the lingering green beans all have been nibbled by some fearless, young deer.
She (or he, I'm not sure) should be fearless, for she was born here, up under the oaks. All of her mother's fawns have slithered out of her in the safety of our upper acres, which are fenced from dogs, even ours, by sturdy chainlink.
This one noses around in the wet leaves that have been dropped by recent storms, and finding what she is seeking, she lifts her head slightly and chews on the acorns that will help to sustain her all winter. As long as it is a mild winter without several feet of snow which would prevent her from being able to paw down to the tasty morsels.
She treads lightly down the ancient deer path and settles quietly into the spot she favors because it is sheltered by the small oaks and because her mother's amniotic fluids have soaked into the earth over the years, her mother's...and her grandmother's most likely as well.
I see her silhouette, just her slim neck and her large ears, as she rests, watchful yet secure in a spot that speaks to her spirit in ways she will never contemplate or care to understand.
This, of course, is not the same yearling I wrote about last Fall and Winter. This is 2008's fawn, pushed out by Mom so she can raise her newest baby.
I've seen this one in the front yard, drinking from the birdbath. I noticed the petunias and geraniums, the leaves of the frosted cherry-tomato plants and the wide leaves of the lingering green beans all have been nibbled by some fearless, young deer.
She (or he, I'm not sure) should be fearless, for she was born here, up under the oaks. All of her mother's fawns have slithered out of her in the safety of our upper acres, which are fenced from dogs, even ours, by sturdy chainlink.
This one noses around in the wet leaves that have been dropped by recent storms, and finding what she is seeking, she lifts her head slightly and chews on the acorns that will help to sustain her all winter. As long as it is a mild winter without several feet of snow which would prevent her from being able to paw down to the tasty morsels.
She treads lightly down the ancient deer path and settles quietly into the spot she favors because it is sheltered by the small oaks and because her mother's amniotic fluids have soaked into the earth over the years, her mother's...and her grandmother's most likely as well.
I see her silhouette, just her slim neck and her large ears, as she rests, watchful yet secure in a spot that speaks to her spirit in ways she will never contemplate or care to understand.
Friday, October 16, 2009
more thinking about Morphometrics...
...actually, more thinking about what the data is showing.
I wrote in my last post that my C1 must have slipped forward...but I'm realizing now that I was wrong. The C1 must have slipped BACK, which allowed the skull to slip forward as Dr. Milhorat said it had.
Which would really account for what I was shown in my 3D CT scan, where the back of my skull is actually resting on the back of the C1 (there should be something like half an inch between the two).
IF the C1 slipped back, that would place it further from the basion or clivus bone. And that is what the morphometrics state...
And if the C1 slipped back, it would allow the skull to slip forward, which would place the clivus closer to the tip of the dens (C2)?
As I said, it's all so convoluted. Nothing applies to me. And I just can't be that person who says, Oh well, it is what it is! I have this drive inside me to understand, to KNOW where things are. I don't know why. Perhaps other patients reading this can relate to what I'm saying. I have this deep NEED to know what is going on and why.
I feel that striving for that understanding will help me if surgery is ever offered to me. I will know the right questions to ask, and I will have more information on which to base my decision.
That is, IF I can remember what I learn. That is not a joke. I seem to be in a constant state of relearning. I learn something, I have those AHA moments...then get all "AHA'd" again a few months later, learning the exact thing again! I take notes, I write here and print it out, I try to keep it all organized, but I can't seem to keep it all in my memory.
What I also got from studying these morphometric findings is a clearer understanding that my anatomical situation IS something that baffles all doctors. It's simply not in the medical journals and studies and articles online. Oh, info on Jefferson Fractures can easily be found...but what happened with my skull and all of that, it's almost unheard of. So, who would know what to do for it?
The graphic on my last post, which is right below this, shows a Jefferson Fracture with 2 breaks. Mine had four breaks. You can see that "dens" or odontoid bone of the C2, sticking up through the C1.
Okay, dear readers, any questions? You'll be tested on this in a few days, so study hard!!
I wrote in my last post that my C1 must have slipped forward...but I'm realizing now that I was wrong. The C1 must have slipped BACK, which allowed the skull to slip forward as Dr. Milhorat said it had.
Which would really account for what I was shown in my 3D CT scan, where the back of my skull is actually resting on the back of the C1 (there should be something like half an inch between the two).
IF the C1 slipped back, that would place it further from the basion or clivus bone. And that is what the morphometrics state...
And if the C1 slipped back, it would allow the skull to slip forward, which would place the clivus closer to the tip of the dens (C2)?
As I said, it's all so convoluted. Nothing applies to me. And I just can't be that person who says, Oh well, it is what it is! I have this drive inside me to understand, to KNOW where things are. I don't know why. Perhaps other patients reading this can relate to what I'm saying. I have this deep NEED to know what is going on and why.
I feel that striving for that understanding will help me if surgery is ever offered to me. I will know the right questions to ask, and I will have more information on which to base my decision.
That is, IF I can remember what I learn. That is not a joke. I seem to be in a constant state of relearning. I learn something, I have those AHA moments...then get all "AHA'd" again a few months later, learning the exact thing again! I take notes, I write here and print it out, I try to keep it all organized, but I can't seem to keep it all in my memory.
What I also got from studying these morphometric findings is a clearer understanding that my anatomical situation IS something that baffles all doctors. It's simply not in the medical journals and studies and articles online. Oh, info on Jefferson Fractures can easily be found...but what happened with my skull and all of that, it's almost unheard of. So, who would know what to do for it?
The graphic on my last post, which is right below this, shows a Jefferson Fracture with 2 breaks. Mine had four breaks. You can see that "dens" or odontoid bone of the C2, sticking up through the C1.
Okay, dear readers, any questions? You'll be tested on this in a few days, so study hard!!
Morphometics Part II
The next measurement on my morphometrics sheet of interest to me is the
"basion-atlas interval."
The first installment of this series dealt with the measurement between the basion, the part of the skull in front of the big hole (foramen magnum) that your spinal cords travels up through to your brain, becoming your brainstem, AND the tip of the dens (pointy finger of bone sticking up from the C2). That was the basion-dens interval.
But now, we are looking at the basion-atlas interval. The distance between the basion (described above) and the atlas, or C1. Normies average 1.8 mm in this distance with a span of 0 mm and 3.0.
This measurement is so small because, in normies, your skull is sitting right on the C1!! Remember, I said in the last installment that the C1 and the occipital bones mesh together? That that was what became dislocated in my anatomy when I fell onto my head? That is why, in the normal range, you see it starts with 0 mm and runs up to only 3.0 mm.
What is MY distance between the basion, the area in front of the foramen magnum (big hole) and my C1 (atlas)?
12.0
Lying down. Supine.
When I am sitting up, under CT, the distance becomes even larger: 12.1, 12.6, 12.8.
I'm struggling to wrap my mind around this, to understand what this means. I know I'm no doctor...but I've been studying this for over five years as I've been my sole advocate for my care, as I've battled my way through various neurosurgeons who have not always had my best interests at heart.
My NY neurosurgeon told me many times that I was a pain in the ass patient. He told me that most neurosurgeons would have nothing to do with me but that he was willing to take me on as a patient and to help. He meant that I was a pain in the ass to other neurosurgeons who have never seen anyone in my situation before and would not know what to do with me. But I was not a "PIA" to him.
So, my skull is very, very close to the tip of the C2, the odontoid. Much closer than normal, much closer than the lowest control study patient.
But...my skull is further away from the C1, A LOT further than away than normies's skulls are from their C1s. Remember, you normies have your skulls about 1.8 mm on average from your atlas bone, C1, because the skull does sit on the atlas bone. At the occipital condyles.
But...MY occipital condyles were dislocated due to the injury/fall. And now, my skull is almost 13 mm (upright) from MY C1.
Hhhmmmm....
there's the skull, C1, C2, working consecutively from the top down.
My skull is closer to the C2 than normal, but further away from the C1 than normal.
How is this even possible?
The only premise that makes sense is that my skull slid forward and downward. Moving the skull further from the C1...but closer to the C2.
In fact, my other NY neuro told me, when these morphometrics were done and after several doctors stood around the computer screens for an hour while I hung in the invasive traction, that when I broke my C1 into four pieces, that was not the only injury I incurred.
I also had my skull break loose from my C1 and slide forward and down. He told me that my skull had, in fact, fused back into place in that position. A wrong position, but hey, it works, sort of.
This doesn't really answer ALL of my questions. I'm not exactly "getting it." But it is giving me more of an understanding of just how messed up my "cranio cervical junction" is!
Morphometrics Part I
Hmmm, what is that?
Well, it seems to be a field of study where angles, lengths, relationships, patterns of organisms are recorded and compared, then used in various scientific data recording. It can serve a variety of purposes.
In medicine, at times, it is used for diagnosis. Where I have been going for treatment in New York, morphometrics is used for just this reason.
I have the print out of these measurements, taken from viewing various CT scans I had done in New York.
There is a section for data titled "Cranio-Cervical Junction." Those not into medicalese can probably figure out that this is right where my problems lie: cranio: skull....cervical is the upper part of the spine. With my Jefferson Fracture of the C1 and "dislocation of the occipital condyles"....this is exactly the area that causes my ongoing problems (except for the pain and weakness in my lower extremities and lower back, which results either from anamolies at my "CCJ" or my tethered cord surgery area (L4, L5, L6, or both).
On this sheet, I see a measurement listed as the "Basion-Dens Interval." I know what this is, but can I explain it? The Dens is the finger-like bone that sticks upward as part of the C2 (axis) vertebra. The C1 (atlas) is a ring which sits over the C2 and together they articulate so that the head and neck can turn in many, many different positions. In fact, this articulation and action is the most varied joint in the body. Just think of how much you can move your head and turn it in so many different positions! (not me, but hopefully, you can! ha!)
Okay, that was the "dens." Now, what's the "basion?" The basion is the clivus bone, and the clivus bone is the part of the skull that is just forward of the foramen magnum. Got it? No?
The foramen magnum is the hole in the bottom of the skull which allows the spinal cord that runs up inside your spine to enter the skull. In fact, when the cord gets up high toward the brain, it becomes the brainstem. The dens (or odontoid) of the C2 should NOT be poking up through the foramen magum.
Your skull rests upon C1. The portions of the bony skull that sits upon C1 and which surround that big hole, the foramen magnum, are: the clivus bone (or basion)which is anterior, or toward the front of that big hole, the foramen magnum...
the occipital condyles which are lateral to the big hole, or to each side. These two occipital condyles actually mesh together with the C1. This is what broke loose on me when I fell from the horse and broke my C1...
and...the occipital bone, which is behind the big hole (foramen magnum). Reach up behind the base of your skull and cup it with your hand...that is the occipital bone.
So...this particular measurement on my morphometrics sheet, the "basion-dens interval," is measuring from the bony part of the skull in front of the foramen magnum down to the tip of the dens, which is, you recall, the bony finger (or "tooth" ie dens) that sticks up from C2.
The specialists take these measurements and compare them to the control study of measurements taken on people without problems at the cranio cervical junction. (we call them "normies.")
My own personal data states that the "normal" readings are an average of 7.4 mm (5.8 - 9.0)
Again, the normal readings run 5.8 to 9.0 mms as a distance between the basion and dens, with an average of 7.4.
The distance between MY basion and dens?
2.4 mm.
This was when I was lying down, without the weight of my head on my spine.
There is data here from when I was upright under CT, and the space closes even more! 2.2, 2.1 and 2.9 mm are recorded.
So, this seems to project, obviously, that the dens is much closer to the basion or clivus than it is supposed to be! No brag, just fact.
I mean, a lot closer.
So that I won't fry your brain with this I will close here and start a new post, a continuation of what I see in my morphometrics. If your eyes haven't glazed over, that is!
Tuesday, October 13, 2009
Lyrica and new doctor search and snow! Oh my!
I received authorization from my work comp insurance to seek out a new neurosurgeon at Oregon Health and Sciences University in Portland, OR. I am so relieved! Since a bogus report was filed by my NY neurosurgeon with my insurance, I wondered if they'd believe him, or me. It seems they believe me. Thank God.
I will call OHSU tomorrow and see if they'd like me to send the CD of imaging that was done in NY last June. There's a lot of cool imaging there to be seen, CINE MRI (shows the flow of cerebrospinal fluid); 3D CT scans; MRIs and CTs and xrays.
So, it's starting all over now, with me explaining once again my entire situation and how I got to where I am now, and hopefully, I will have a caring physician who will listen to me, who will think wisely and deeply and will honor what I know, what I've experienced, and what I'm dealing with now.
I saw my primary today and we talked about the new NS search. I also talked to him about how much pain I am in. Even though I'm taking the maximum dose of oxycodone that he has prescribed, I am always in pain, and usually, most often, in a LOT of heavy duty pain.
He thought I should try Lyrica, which is an anti-convulsant but has been found to be effective in central nervous system pain such as is found in spinal cord injury. I think I've been reluctant to try it because I've heard what a "weight gainer" it is, but I'm going to try it. Tonight will be my first, small dose.
The other day, I snipped the last gladiola, a graceful, pink one, and brought it in the house, placing it in water in the antique, rose-garden vase I have.
This morning, we had our first snow of the season! Big flakes came down steady for about 30 minutes. A dusting of snow is still hanging around. My nurse told me that she was born and raised here, and has never seen snow this early. Confirming her memory, the Portland weatherman said that this snow certainly did set a new record for early snow. The previous record was snow on Oct. 26, I believe.
Well, I won't stay here long. Pain starts in the back of my head, even tho I recently took a pain pill. This is why I don't post too often, but I think of my readers all the time! I make notes of observation, ideas to post about, but the times comes and goes and the thought seems irrelevant.
Wild turkey and deer abound in our yard each day. The deer must have come up on our little front deck and eaten the pink petunias that were still, hardily blossoming in a big, decorative pot. The other day, a lovely fawn was drinking from the birdbath, melting a hole in the ice with her warm, black nose.
I will call OHSU tomorrow and see if they'd like me to send the CD of imaging that was done in NY last June. There's a lot of cool imaging there to be seen, CINE MRI (shows the flow of cerebrospinal fluid); 3D CT scans; MRIs and CTs and xrays.
So, it's starting all over now, with me explaining once again my entire situation and how I got to where I am now, and hopefully, I will have a caring physician who will listen to me, who will think wisely and deeply and will honor what I know, what I've experienced, and what I'm dealing with now.
I saw my primary today and we talked about the new NS search. I also talked to him about how much pain I am in. Even though I'm taking the maximum dose of oxycodone that he has prescribed, I am always in pain, and usually, most often, in a LOT of heavy duty pain.
He thought I should try Lyrica, which is an anti-convulsant but has been found to be effective in central nervous system pain such as is found in spinal cord injury. I think I've been reluctant to try it because I've heard what a "weight gainer" it is, but I'm going to try it. Tonight will be my first, small dose.
The other day, I snipped the last gladiola, a graceful, pink one, and brought it in the house, placing it in water in the antique, rose-garden vase I have.
This morning, we had our first snow of the season! Big flakes came down steady for about 30 minutes. A dusting of snow is still hanging around. My nurse told me that she was born and raised here, and has never seen snow this early. Confirming her memory, the Portland weatherman said that this snow certainly did set a new record for early snow. The previous record was snow on Oct. 26, I believe.
Well, I won't stay here long. Pain starts in the back of my head, even tho I recently took a pain pill. This is why I don't post too often, but I think of my readers all the time! I make notes of observation, ideas to post about, but the times comes and goes and the thought seems irrelevant.
Wild turkey and deer abound in our yard each day. The deer must have come up on our little front deck and eaten the pink petunias that were still, hardily blossoming in a big, decorative pot. The other day, a lovely fawn was drinking from the birdbath, melting a hole in the ice with her warm, black nose.
Saturday, October 3, 2009
Central Pain Syndrome
I just thought I'd post here, from the NIH website, the definition of Central Pain Syndrome. Many of the readers here have this, but do not know the name for what they are dealing with.
What is Central Pain Syndrome?
Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's disease.
The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage.
Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of "pins and needles;" pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve.
Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, especially if it is related to post-stroke pain.
Is there any treatment?
Pain medications often provide some reduction of pain, but not complete relief of pain, for those affected by central pain syndrome. Tricyclic antidepressants such as nortriptyline or anticonvulsants such as neurontin (gabapentin) can be useful. Lowering stress levels appears to reduce pain.
What is the prognosis?
Central pain syndrome is not a fatal disorder, but the syndrome causes disabling chronic pain and suffering among the majority of individuals who have it.
http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm
What is Central Pain Syndrome?
Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's disease.
The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage.
Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of "pins and needles;" pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve.
Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, especially if it is related to post-stroke pain.
Is there any treatment?
Pain medications often provide some reduction of pain, but not complete relief of pain, for those affected by central pain syndrome. Tricyclic antidepressants such as nortriptyline or anticonvulsants such as neurontin (gabapentin) can be useful. Lowering stress levels appears to reduce pain.
What is the prognosis?
Central pain syndrome is not a fatal disorder, but the syndrome causes disabling chronic pain and suffering among the majority of individuals who have it.
http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm
Thursday, October 1, 2009
Semantics and Complaints
When doctors write down your symptoms, they list them as "complaints."
They write in their reports: "patient complains of .... "
Yet, as I noted in the last post here, most of us were conditioned by our parents and teachers not to complain.
"Complain" has such a negative connotation. It conjures up whining little kids, crying because big brother took her lollipop!
"Buck up!" "Cowboy up!" I've heard some people say, "Put on your big-girl panties!"
Which is all well and good, serves some useful purposes, I know. But when you are in deep, chronic pain, the kind that emanates from the spinal cord, you perhaps can "buck up, little buckaroo" at home, among your family and friends, but when you are with your doctor, you need to present those "complaints."
I always take a detailed symptom list to a new doctor. I save it on my computer, as well. Since I've been dealing so long with this now, it has proven valuable, as I've been able to tell a doctor, "Look, I reported this swallowing problem five years ago!" (Time does go by fast when you're having fun, they say.)
So....what does a doctor think when he hears the word, "complaint."
He was probably raised the same way we were. And when a patient presents a list of symptoms or tells of a problem, does this doctor instinctively judge the patient before him or her, remembering their own upbringing, perhaps a teacher telling them to stop crying and go back onto the playground and push that bully back?
Does he or she care enough to battle those instincts?
There's a book out called "How Doctors Think" or something like that. I need to get that book. I have a feeling this issue might be in it.
Up north, the old cowboys have a saying.
A horse might run into the corral with the rest of the remuda, but she is limping and presenting with a gaping, bleeding wound.
The crusty, old-timers will often say, "Ah...it's a long way from 'er heart!"
Meaning, it's a simple thing not worthy of worrying about. It won't kill her ( how often they've been proved wrong is not known, however).
They write in their reports: "patient complains of .... "
Yet, as I noted in the last post here, most of us were conditioned by our parents and teachers not to complain.
"Complain" has such a negative connotation. It conjures up whining little kids, crying because big brother took her lollipop!
"Buck up!" "Cowboy up!" I've heard some people say, "Put on your big-girl panties!"
Which is all well and good, serves some useful purposes, I know. But when you are in deep, chronic pain, the kind that emanates from the spinal cord, you perhaps can "buck up, little buckaroo" at home, among your family and friends, but when you are with your doctor, you need to present those "complaints."
I always take a detailed symptom list to a new doctor. I save it on my computer, as well. Since I've been dealing so long with this now, it has proven valuable, as I've been able to tell a doctor, "Look, I reported this swallowing problem five years ago!" (Time does go by fast when you're having fun, they say.)
So....what does a doctor think when he hears the word, "complaint."
He was probably raised the same way we were. And when a patient presents a list of symptoms or tells of a problem, does this doctor instinctively judge the patient before him or her, remembering their own upbringing, perhaps a teacher telling them to stop crying and go back onto the playground and push that bully back?
Does he or she care enough to battle those instincts?
There's a book out called "How Doctors Think" or something like that. I need to get that book. I have a feeling this issue might be in it.
Up north, the old cowboys have a saying.
A horse might run into the corral with the rest of the remuda, but she is limping and presenting with a gaping, bleeding wound.
The crusty, old-timers will often say, "Ah...it's a long way from 'er heart!"
Meaning, it's a simple thing not worthy of worrying about. It won't kill her ( how often they've been proved wrong is not known, however).
Who's this for?
Oh, the pain this morning!
It gets me frustrated sometimes that just doing things that are simple ends up with me enduring this all-over, central pain.
I mean, it's not like I'm out riding roller coasters or anything! I wonder how I'd feel if I rented a horse and went for a ride? Couldn't feel worse, I don't think. Don't worry, I am too weak to climb on a horse anyway.
The other day, a fellow "Chiarian" (not to be confused with my fellow "Martians!") came over to spend the night. I enjoyed her visit so much. She stayed about 21 hours, all tolled, and at least 7 hours of that, we were sleeping.
But, oh, all that talking! We had so much to catch up on, it was so needful for us to talk. She has had the craniocervical fusion that I have been expecting to have for so long. But she wants to have her skull rods removed. She says they cause her so much pain.
At one time, she felt very sure her problems, post-fusion, were due to a tethered spinal cord. She considered seeking surgery for it. Since I've had the TC surgery, I am now able to tell her, "I'm so glad that you didn't have this surgery! It didn't resolve any pain issues for me and in fact, I have more pain than ever now."
So, it seems interesting that she had a surgery I have longed for, and she wishes she hadn't had it. And I had a different surgery that she wished for, and...well, I can't say I wish I hadn't. My faith won't let me say that. But I sure couldn't push her toward it!
After her drove from my driveway and I closed the gate at the road, I laid down and suffered so badly for the next 24 hours with pain behind the head. I had tried to keep things low key and not laugh much...I attempted to let her to do more talking than me (very hard, I know!)
Then, yesterday, I went to our shopping town and, yes, I admit it, I dared to walk straight through to Home Depot's paint department and select some paint, and then carried that gallon out to the truck where my husband/driver awaited. How dare I!! Last night...this morning...my body is letting me know that I rebelliously had pushed past my pain-inflicted restrictions.
Ah, someone just sent me an email. An old friend, asking for my phone number so that he can call and "catch up." Now, I'm in the position of having to tell him that I just don't "do phones." It's the "talking thing," you see. Though I'd love to visit with him and see how he's doing, I won't.
I posted on the Chiari support group site (where I help moderate) a question concerning others experiencing occipital pain from talking. I was surprised at how many took the time from their hurting days and told me that, yes, this is a common complaint for them.
I know it's been an evolutionary thing. Right after I broke my neck, with a raging spirit straining against the harness to return to "normal," I went back to playing music and singing in a little bluegrass band I was in. Finally, 5 months after my injury and after hosting a little show (and singing/playing), I knew it was my last time on stage.
Such a big thing for me to give up, just like horses. I played mandolin, banjo, rhythm and lead guitar and sang lead and harmony vocals. We mostly sang Gospel music and entertained at churches. But, I found that the singing led to such debilitating pain. I felt like the back of my head was a sound chamber and the act of singing and bouncing those notes around was the reason for the backlash of pain and whole body weakness. I knew, on that September night in California, that I could no longer perform on stage.
I often think of visiting cowboy poetry shows to see old friends. But, first, the talking and laughing would do a number on me. And I'd have to explain over and over why I was not performing. And everyone wouldn't recognize me anyway. Oh, they'd probably know my face, even though I weigh 40 lbs more than the last time they'd seen me. But they would not recognize my outward personality, I suspect.
So, it started with singing...and has now evolved into talking, as well.
I saw my primary doctor the other day, and he is starting the "ball rolling" on getting me a new neurosurgeon at Oregon Health and Sciences University. I already go there to see my endocrinologist, Dr. Madison, who is excellent. My primary feels I need someone to take care of my neck. One of my AMEs (agreed upon medical examiner) also feels I need a specialist. Sounds like when I gave up seeking help, some of these doctors became willing to show compassion and seek help for me.
I don't know if I want surgery or not. It will depend on what the surgeon says. I guess that I have been bashed around by neurosurgical specialists so much lately that I have finally given up hope of being "better." And I sure don't want to go through that and be worse. So, we'll see.
And it will depend upon how I progress or decline as time goes along.
I have received so many emails from folks I don't know, who follow this blog and tell me that they get so much from it, that I give voice to their own pain, frustrations, fears, etc. Those notes really keep me going.
It also helps me because I was taught, like most of us were, not to complain or whine. To put a smile on and face the world. To "not" give a voice to that pain! Cowboy up!!
And that gives me a little guilt about writing here about the pain.
I also think of my friends who come here for updates. And, I feel badly that all they get to read is how bad I feel! But then I've come to the understanding that these posts are for fellow sufferers. And friends and family can read if they wish...if they can stand it (!)....but mainly, this one's for those who suffer with pain every minute,
who have families who do not understand...
who have doctors who belittle them or disbelieve them...
who cling to hope while facing reality....
who question their faith and wonder if they can hold on....
who pray for a doctor that will understand, listen, have new ideas, validate their symptoms...
who wish for normalcy...
who understand what it's like not to be able to call your mom as often as you'd like...
who would never consider suicide and are not depressed,
yet who sometimes look forward to heaven where there is no pain...
who need a friend, a compatriot in this struggle.
It gets me frustrated sometimes that just doing things that are simple ends up with me enduring this all-over, central pain.
I mean, it's not like I'm out riding roller coasters or anything! I wonder how I'd feel if I rented a horse and went for a ride? Couldn't feel worse, I don't think. Don't worry, I am too weak to climb on a horse anyway.
The other day, a fellow "Chiarian" (not to be confused with my fellow "Martians!") came over to spend the night. I enjoyed her visit so much. She stayed about 21 hours, all tolled, and at least 7 hours of that, we were sleeping.
But, oh, all that talking! We had so much to catch up on, it was so needful for us to talk. She has had the craniocervical fusion that I have been expecting to have for so long. But she wants to have her skull rods removed. She says they cause her so much pain.
At one time, she felt very sure her problems, post-fusion, were due to a tethered spinal cord. She considered seeking surgery for it. Since I've had the TC surgery, I am now able to tell her, "I'm so glad that you didn't have this surgery! It didn't resolve any pain issues for me and in fact, I have more pain than ever now."
So, it seems interesting that she had a surgery I have longed for, and she wishes she hadn't had it. And I had a different surgery that she wished for, and...well, I can't say I wish I hadn't. My faith won't let me say that. But I sure couldn't push her toward it!
After her drove from my driveway and I closed the gate at the road, I laid down and suffered so badly for the next 24 hours with pain behind the head. I had tried to keep things low key and not laugh much...I attempted to let her to do more talking than me (very hard, I know!)
Then, yesterday, I went to our shopping town and, yes, I admit it, I dared to walk straight through to Home Depot's paint department and select some paint, and then carried that gallon out to the truck where my husband/driver awaited. How dare I!! Last night...this morning...my body is letting me know that I rebelliously had pushed past my pain-inflicted restrictions.
Ah, someone just sent me an email. An old friend, asking for my phone number so that he can call and "catch up." Now, I'm in the position of having to tell him that I just don't "do phones." It's the "talking thing," you see. Though I'd love to visit with him and see how he's doing, I won't.
I posted on the Chiari support group site (where I help moderate) a question concerning others experiencing occipital pain from talking. I was surprised at how many took the time from their hurting days and told me that, yes, this is a common complaint for them.
I know it's been an evolutionary thing. Right after I broke my neck, with a raging spirit straining against the harness to return to "normal," I went back to playing music and singing in a little bluegrass band I was in. Finally, 5 months after my injury and after hosting a little show (and singing/playing), I knew it was my last time on stage.
Such a big thing for me to give up, just like horses. I played mandolin, banjo, rhythm and lead guitar and sang lead and harmony vocals. We mostly sang Gospel music and entertained at churches. But, I found that the singing led to such debilitating pain. I felt like the back of my head was a sound chamber and the act of singing and bouncing those notes around was the reason for the backlash of pain and whole body weakness. I knew, on that September night in California, that I could no longer perform on stage.
I often think of visiting cowboy poetry shows to see old friends. But, first, the talking and laughing would do a number on me. And I'd have to explain over and over why I was not performing. And everyone wouldn't recognize me anyway. Oh, they'd probably know my face, even though I weigh 40 lbs more than the last time they'd seen me. But they would not recognize my outward personality, I suspect.
So, it started with singing...and has now evolved into talking, as well.
I saw my primary doctor the other day, and he is starting the "ball rolling" on getting me a new neurosurgeon at Oregon Health and Sciences University. I already go there to see my endocrinologist, Dr. Madison, who is excellent. My primary feels I need someone to take care of my neck. One of my AMEs (agreed upon medical examiner) also feels I need a specialist. Sounds like when I gave up seeking help, some of these doctors became willing to show compassion and seek help for me.
I don't know if I want surgery or not. It will depend on what the surgeon says. I guess that I have been bashed around by neurosurgical specialists so much lately that I have finally given up hope of being "better." And I sure don't want to go through that and be worse. So, we'll see.
And it will depend upon how I progress or decline as time goes along.
I have received so many emails from folks I don't know, who follow this blog and tell me that they get so much from it, that I give voice to their own pain, frustrations, fears, etc. Those notes really keep me going.
It also helps me because I was taught, like most of us were, not to complain or whine. To put a smile on and face the world. To "not" give a voice to that pain! Cowboy up!!
And that gives me a little guilt about writing here about the pain.
I also think of my friends who come here for updates. And, I feel badly that all they get to read is how bad I feel! But then I've come to the understanding that these posts are for fellow sufferers. And friends and family can read if they wish...if they can stand it (!)....but mainly, this one's for those who suffer with pain every minute,
who have families who do not understand...
who have doctors who belittle them or disbelieve them...
who cling to hope while facing reality....
who question their faith and wonder if they can hold on....
who pray for a doctor that will understand, listen, have new ideas, validate their symptoms...
who wish for normalcy...
who understand what it's like not to be able to call your mom as often as you'd like...
who would never consider suicide and are not depressed,
yet who sometimes look forward to heaven where there is no pain...
who need a friend, a compatriot in this struggle.
Monday, September 21, 2009
No more tiny needles
Today, I went to the acupuncturist and told him that I didn't want to come there anymore.
It's too far, 35 miles one way, and I feel nothing whatsoever from the treatment.
I told him that probably it's my fault, I can't come every week and perhaps it would have helped some if I'd been able to. But it's too painful for me to go that far each week. I don't even go "into town" that often, and I live inside the city limits!
We discussed a bit about what acupuncture has done for his other patients. I asked him if he ever treated anyone with "central pain."
He said, "Meaning?"
"Central Nervous System stuff...spinal cord damage," I answered.
He curtly replied, "Pain is pain." [From this, I could tell he was not familiar with the Central Nervous System]
Not in the mood or the mode to argue, I let him insert a few needles. As usual, he dimmed the lights and walked out, leaving me on the hard table. I lay there praying he'd come back soon, because the one, lifeless pillow under my head was no padding for the back of my skull. I gave myself some loose perameters ("If I start getting the lightning pains in the back of my skull, I'll get up, needles or no").
He usually leaves me there for 15 minutes but I'm sure I was there at least 30 minutes this time. I listened to any activity outside the door, and I'm sure he had no other patients.
When the lights were switched on, his friendly voice asked how I was doing.
"Okay, I guess, though the back of my head was sure hurting on this uncomfortable pillow," I told him.
His manner had changed, he treated me with more deference and respect. After apologizing, he told me that with what I have going on, acupuncture would only offer some palliative results, not curative.
Meaning it might help lessen the pain, but it was too late to think it would take away the pain altogether.
I rather think he left me in the dark room for so long because he was on the internet studying the difference between peripheral pain and central pain.
If so, I give him credit for that.
I won't go back, but he was a nice man.
For that, at least, I am thankful.
It's too far, 35 miles one way, and I feel nothing whatsoever from the treatment.
I told him that probably it's my fault, I can't come every week and perhaps it would have helped some if I'd been able to. But it's too painful for me to go that far each week. I don't even go "into town" that often, and I live inside the city limits!
We discussed a bit about what acupuncture has done for his other patients. I asked him if he ever treated anyone with "central pain."
He said, "Meaning?"
"Central Nervous System stuff...spinal cord damage," I answered.
He curtly replied, "Pain is pain." [From this, I could tell he was not familiar with the Central Nervous System]
Not in the mood or the mode to argue, I let him insert a few needles. As usual, he dimmed the lights and walked out, leaving me on the hard table. I lay there praying he'd come back soon, because the one, lifeless pillow under my head was no padding for the back of my skull. I gave myself some loose perameters ("If I start getting the lightning pains in the back of my skull, I'll get up, needles or no").
He usually leaves me there for 15 minutes but I'm sure I was there at least 30 minutes this time. I listened to any activity outside the door, and I'm sure he had no other patients.
When the lights were switched on, his friendly voice asked how I was doing.
"Okay, I guess, though the back of my head was sure hurting on this uncomfortable pillow," I told him.
His manner had changed, he treated me with more deference and respect. After apologizing, he told me that with what I have going on, acupuncture would only offer some palliative results, not curative.
Meaning it might help lessen the pain, but it was too late to think it would take away the pain altogether.
I rather think he left me in the dark room for so long because he was on the internet studying the difference between peripheral pain and central pain.
If so, I give him credit for that.
I won't go back, but he was a nice man.
For that, at least, I am thankful.
Friday, September 18, 2009
Learning to live with disappointment...
...and seeing the big picture...the reward later on.
Seems like my psyche has had a lot of disappointments lately.
I'll look up "disappoint" in my old "American College Dictionary," dated 1948.
To fail to fulfill the expectations or wishes of (a person);
2)to defeat the fulfillment of (hopes, plans, etc)
thwart; frustrate
A craniocervical fusion set for April 28 at The Chiari Institute in New York, only to be postponed due to situations there beyond my control.
That surgery re-scheduled for June 3. Thwarted.
A trip to Bethesda, MD to see a new doctor, an appointment that seemed filled with bright hope for the future. Cancelled by the doctor a week before I would leave to go see him.
A visit from my mother who lives 3000 miles away (and whom I've not seen in four years) and my sister who lives in Hawaii, I guess another 3000 miles in the opposite direction. They planned to meet here, something they've never done. I was full of expectation about their visit. Over the months since I'd bought my mother her first class ticket, I primped and preened our house and garden as much as my health would allow.
I looked at everything in my environment through my family's eyes. I planned on how to fix up a comfy room for my sister to stay in, and I made small changes to our guest room as I remembered my mother's wishes and likes, and her needs.
Suddenly, yesterday, a week before they were to arrive, we, as a group, agreed to cancel the trip altogether. My mother was filled with anxiety about leaving her home, and about flying. It seemed best to remove those anxieties and hope for a time in the future when we two daughters can fly back to her home and spend time with her that will be more relaxed for her.
I thought, as I suggested the change of plan, "No problem. I'm glad with just being home in my routine without company."
But almost everything I do reminds me of my excitement, my expectation of their arrival. How they would "see" my home, how much I knew they'd like it. It will take some time.
I'm still working my way through my grief at the loss of my appointment in Maryland, at the unexpected loss of a surgical plan, a future that would be a promise of less pain and more mobility. I know from experience there is nothing I can do to hurry myself through this process.
I put on a brave face and tell people I'm okay staying home and learning the lessons God has for me, about trusting Him fully. I talk to myself in convincing tones that I am so much happier NOT heading into a hospital operating room, not needing to become acclimated to long, titanium rods reaching from my upper skull to my C5.
I tell myself that, but deep down, my emotions are still linked to that hope I carried for so long. Not just the 3 years that I was a TCI patient, but longer than that, back to when I first contacted TCI...back to when I studied about fusions (and continued to do so even up to as recently as a month ago). And that link doesn't instantly dissolve in the bitter liquid of rejection (from doctors). It must be stronger than that.
At my age, I know that this feeling will pass. I know that I will get into a new direction and I'll be fine. And that I'll look back and know "it all worked out for the best." But right now, I'm still grieving that.
And my sister and mother not keeping their commitment to come visit (even though I know I was the one who suggested the cancellation) seems to irritate that same "nerve" of rejection that has been riled up by 3 neurosurgeons lately.
How fragile are we! How tender our spirits as we move from day to day, playing the part of the strong and stolid adult, making wise decisions, speaking the right words, speaking of Faith and "Letting go and letting God." When deep inside, we are frightened children so in need of comforting arms.
For me, it's a doctor I need. One who validates all that I've been through, and who promises to be there for me through the tough stuff.
A friend of mine just reported back to me on her visit with the same neurosurgeon I'd hoped to see in Maryland. Her outcome was so much different. He gave her honor and respect, he gave her a full evaluation. She was astounded by his wisdom and experience and he validated all of her pain and suffering with various diagnoses that he has plans with which to help her.
And I am honestly happy for her, but there's a hurting place inside of me where I feel like the kid that didn't get picked until last for a ball game on the playground. Only this is a much more important game, and not really a game at all.
I can't help wistfully thinking, "I wish I'd been able to go and come home with that validation, with a surgical plan so that there is hope for the future. With a caring neurosurgeon."
With a stoic demeanor, I hide these childish emotions. I have Faith that all will work out for me. I have Faith that what happened to me is what was meant to happen. I know, from experience, that I will go through these emotional valleys (especially when they are part and parcel of Post Traumatic Stress Disorder).
I know that at some point in the near future, my heart and my brain will wrap itself all around this, and I will forget the disappointment and despair I felt from abruptly-changed plans and unintentional rejection.
Given out by our local tire store, my calendar on the wall shows a New Hampshire-type, September scene, the old white farm house with black shutters, the red barns and outbuildings, nestled in a green valley surrounded by colorful maples, oaks and fir.
And below the picture, an inspirational note I'd not seen before:
Change is difficult but often essential to survival.
Seems like my psyche has had a lot of disappointments lately.
I'll look up "disappoint" in my old "American College Dictionary," dated 1948.
To fail to fulfill the expectations or wishes of (a person);
2)to defeat the fulfillment of (hopes, plans, etc)
thwart; frustrate
A craniocervical fusion set for April 28 at The Chiari Institute in New York, only to be postponed due to situations there beyond my control.
That surgery re-scheduled for June 3. Thwarted.
A trip to Bethesda, MD to see a new doctor, an appointment that seemed filled with bright hope for the future. Cancelled by the doctor a week before I would leave to go see him.
A visit from my mother who lives 3000 miles away (and whom I've not seen in four years) and my sister who lives in Hawaii, I guess another 3000 miles in the opposite direction. They planned to meet here, something they've never done. I was full of expectation about their visit. Over the months since I'd bought my mother her first class ticket, I primped and preened our house and garden as much as my health would allow.
I looked at everything in my environment through my family's eyes. I planned on how to fix up a comfy room for my sister to stay in, and I made small changes to our guest room as I remembered my mother's wishes and likes, and her needs.
Suddenly, yesterday, a week before they were to arrive, we, as a group, agreed to cancel the trip altogether. My mother was filled with anxiety about leaving her home, and about flying. It seemed best to remove those anxieties and hope for a time in the future when we two daughters can fly back to her home and spend time with her that will be more relaxed for her.
I thought, as I suggested the change of plan, "No problem. I'm glad with just being home in my routine without company."
But almost everything I do reminds me of my excitement, my expectation of their arrival. How they would "see" my home, how much I knew they'd like it. It will take some time.
I'm still working my way through my grief at the loss of my appointment in Maryland, at the unexpected loss of a surgical plan, a future that would be a promise of less pain and more mobility. I know from experience there is nothing I can do to hurry myself through this process.
I put on a brave face and tell people I'm okay staying home and learning the lessons God has for me, about trusting Him fully. I talk to myself in convincing tones that I am so much happier NOT heading into a hospital operating room, not needing to become acclimated to long, titanium rods reaching from my upper skull to my C5.
I tell myself that, but deep down, my emotions are still linked to that hope I carried for so long. Not just the 3 years that I was a TCI patient, but longer than that, back to when I first contacted TCI...back to when I studied about fusions (and continued to do so even up to as recently as a month ago). And that link doesn't instantly dissolve in the bitter liquid of rejection (from doctors). It must be stronger than that.
At my age, I know that this feeling will pass. I know that I will get into a new direction and I'll be fine. And that I'll look back and know "it all worked out for the best." But right now, I'm still grieving that.
And my sister and mother not keeping their commitment to come visit (even though I know I was the one who suggested the cancellation) seems to irritate that same "nerve" of rejection that has been riled up by 3 neurosurgeons lately.
How fragile are we! How tender our spirits as we move from day to day, playing the part of the strong and stolid adult, making wise decisions, speaking the right words, speaking of Faith and "Letting go and letting God." When deep inside, we are frightened children so in need of comforting arms.
For me, it's a doctor I need. One who validates all that I've been through, and who promises to be there for me through the tough stuff.
A friend of mine just reported back to me on her visit with the same neurosurgeon I'd hoped to see in Maryland. Her outcome was so much different. He gave her honor and respect, he gave her a full evaluation. She was astounded by his wisdom and experience and he validated all of her pain and suffering with various diagnoses that he has plans with which to help her.
And I am honestly happy for her, but there's a hurting place inside of me where I feel like the kid that didn't get picked until last for a ball game on the playground. Only this is a much more important game, and not really a game at all.
I can't help wistfully thinking, "I wish I'd been able to go and come home with that validation, with a surgical plan so that there is hope for the future. With a caring neurosurgeon."
With a stoic demeanor, I hide these childish emotions. I have Faith that all will work out for me. I have Faith that what happened to me is what was meant to happen. I know, from experience, that I will go through these emotional valleys (especially when they are part and parcel of Post Traumatic Stress Disorder).
I know that at some point in the near future, my heart and my brain will wrap itself all around this, and I will forget the disappointment and despair I felt from abruptly-changed plans and unintentional rejection.
Given out by our local tire store, my calendar on the wall shows a New Hampshire-type, September scene, the old white farm house with black shutters, the red barns and outbuildings, nestled in a green valley surrounded by colorful maples, oaks and fir.
And below the picture, an inspirational note I'd not seen before:
Change is difficult but often essential to survival.
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