I haven't posted in a few days...not much to say. I'm getting weaker and weaker.
Now, I am starting to be concerned. At first, delighted that I would not be able to have the extraction fusion in order to stabilize my broken neck...thankful I would not have to deal with six months of halo...I wrote that I would be accepting of that.
But being accepting of the impossibility of having the surgery does not mean the problem goes away. And it's hard to not be concerned when things get worse.
Does true faith mean that I stop being concerned?
Does it mean I would not be trying to find answers?
That I would not notice increasing disability?
Or would God want me to keep trying to find help?
Would He want me to keep an eye on things? Try to find answers?
It seems like really honest faith would mean I'd let it all go, and trust that God has an answer
somewhere down the line. And that this is the way it's all meant to go.
I thought I had faith. I thought I had gone through tough times often in my life, and faith had gotten me through, and that I had learned faith through those events.
But if faith means that I do not notice increasing weakness and neurological, spinal cord pain; if it means I go on as if nothing is happening or wrong; if it means I do not seek something from doctors and just go ahead with a life on pain medications and experiencing decline then I'm not doing a very good job of it.
I have glimpses of that kind of faith, but, mostly, the pain keeps me beaten down. I have that strong "thing" deep inside of me that knows God has a plan and that He is in control. Without that, I couldn't survive. But closer to the surface there is concern, wishing it were not so, and a seeking for professional help.
A few days ago, I went to our shopping town 35 miles away to be with my husband and do some errands. I went in the first store, the hardware type, and after walking through it once, I asked my husband for the keys to the truck, I needed to go rest. I had my CTO vest on and my walking stick.
Next, to the Ink place for some printer ink refills. I got out and did this quick chore, then we went next to Bi Mart, a little membership store that suffices for WalMart, which is not close to us. I walked through that store and lost track of my husband. I walked across the store with the basket, looking down each aisle for a glimpse of him. This meant that I had to turn my head back straight forward to watch where I was going...walk 8 ft and look to the side again...look back straight and walk 8 ft, look to the side. About 15 rows and no sight of him, so I walked back across the store doing the same thing, very slowly and carefully turning my head. How stupid of me.
Next to Home Depot, but I stayed in the truck. Then to have lunch at Burgerville. I felt painfully weak and confused. Having something to eat helped.
Then, we drove home and all the way home, how I suffered. Just 30 minutes of driving. Once again, by the time we got home, I could barely make it out of the truck and into the house. Once inside, I peeled off the CTO and fell into bed and slept 90 minutes.
This happens every time I go to the shopping town. We used to go twice a week and it was always fun for us to do. Now, I hate going. My husband had to go there yesterday and I declined his invitation to join him, though I wanted to do it.
The world is shrinking and even the little tiny world is so painful, every day, day after day...a "good day" might have an hour in it when the pain has subsided. The medication I take, a small dose, as neurological patients go, of 5 doses a day with 5 mg each of oxycodone...it isn't doing the job.
New symptoms evolve, old ones come back, existing ones intensify. No progress. Nothing to look at and say, "at least this is better," or "maybe this means I'm getting better!"
I'm thankfully happy in spirit with my life and my wonderful husband. In the midst of all this, I smile and laugh often.
Phone calls are so hard on me. I've written this before, but I just thought of something that adds into it. We have a small business or "paid hobby" and I get phone calls from prospective buyers. I must chat them up and if they make an order, it takes a lot of talking to get a custom order ironed out.
Then, if I need to talk to a vendor of some kind (this morning, it was Broderbund on the phone as I had downloaded - or tried to -- a Print Shop product and it doesn't work on my new computer which has Vista) and I get a nice, talkative gal on the line who wants to talk about her weather in Iowa and our weather out here and how she fell on the sidewalk over Christmas and how her mother is doing....
well, it all adds up! And I don't have the strength to visit with dear, loved ones like I want to. It doesn't seem right, but such is life. Not "right" sometimes. Right?
Well, this is one of those whining posts, but for me, it chronicles how things are going. Downhill.
It is what it is.
Monday, December 29, 2008
Tuesday, December 23, 2008
Christmas Past
I have so many memories of many, many Christmases past.
When I was young and growing up on a rural road, I was blessed to have girlfriends near my age who lived right up the road from me. Carol, Alice and Ginny. We all got into trouble as much as a group of boys!
One of the things we'd do each Christmas is stand in Carol and Alice's kitchen (they are sisters) and on the blackboard next to the phone, we'd write the lyrics out to "The Twelve Days of Christmas."
Then we'd random dial a phone number and when the person answered, we'd lay the phone down and start singing all the way through the song! At the end, one of us would pick up the phone and say, "How did you like that?"
Often, we'd hear the telltale buzz of the phone telling us the person had hung up long ago. But sometimes, people would be so pleased and excited and tell us how much they loved our phone-caroling. We all remember how one lady said, "Oh, could you sing that again so my husband can hear it!"
My father would always take me out driving on one or more evenings to see the Christmas decorations in town. I'd look forward to this so much, while we drove with my mother's stepmother ( Freda, who lived alone since Grandpa died) around the city streets, punctuating the warm air inside the old BelAir with "Oooohs" and "Aahhhs" and "Oh, look over there!"
All the neighboring children would always go caroling from house to house on that New Hampshire backroad. One of the older kids must have made up song sheets, and with mittens pinned to coat sleeves and toboggan caps with knitted balls on top, we trudged through the snow up to front doors, knocked and then stood back and began to sing and sing. We'd sing perhaps five songs at each house, and I'd guess we entertained at 15 or so houses!
I can recall, after presents were opened, running up the road with a big stuffed dog or truck-horsetrailer set to show Carol and Alice! They'd show me what they'd receive and we'd play on the floor with the new toys, the woodstove humming nearby while their mother, Martha, cooked a big dinner in the kitchen.
Do you recall those large, plastic faces of Santa that had a cord coming from behind them, and they would light up when plugged in? People would always have them on their houses, and our house was no different. I wonder if those can still be found.
In New Hampshire, it is tradition to put an electric candle on the windowsill in each window of the house, upstairs and down. Many of the houses were so big, colonial homes with many windows and I wondered who went from room to room twice each night, once to plug them in and once to unplug them before bed.
We'd usually go to my mother's father's home for Christmas dinner. When I grew up, dinner was the noon meal and supper was the evening meal. My parents were divorced, but Dad believed in tradition and so he still went up to Grampa's and Freda's for Thanksgiving and Christmas. After Grandpa died, I started dividing the day in half. The morning was spent with Dad, and the afternoon was spent with Mom and her family. It was hard for me to leave Dad alone on Christmas, I hated that part of it, even though I always looked forward to going up to Mom's and seeing what was left under the tree for me!
Oh, Christmas vacation for us kids! We loved to go sliding on Spofford Hill, up the road about a half a mile. We'd pull our steel runnered sleds up the road, with our ice skates' laces knotted and then looped over our necks. We had winter fun ahead that would last all day!
The hilly pasture, covered with deep snow, was wide and long and had a few dips and rises to it. We would slide and slide and slide ... we never called it sledding, we went "sliding." It was "our" hill, no other kids showed up to slide there. I'm not sure we ever asked permission to play there, but thankfully Mr. Spofford whose old farmhouse stood guard at the top of the hill, did not seem to mind.
When we were tired of climbing back up the hill after the red-faced rush of the pull of gravity, we'd tramp over to the little pond of water at the base of the hill. Someone brought a shovel, and we cleaned it off, slipped on our skates and whooshed around with each, girls and boys laughing so hard, getting along, icy cold toes inside tight skates and runny noses.
In certain winters, the conditions were just right for an activity not many could imagine. If we had a cold winter but little snow, the swamps around us would freeze solid, and we could skate for what felt like miles. In and out of trees and bushes, finding trails that looped through the woods, jumping over branches hanging over the ice. I didn't know then that not everyone has experienced such a thing.
One year, my Dad built from scratch a very large, very heavy double-runner sled. He worked for weeks in the garage and when he proudly pulled it out into the snowy driveway, I climbed up a snowbank and snapped a shot of the sled, with my dog, Chico, sitting on it, with my black and white Kodak.
At least once each winter, there'd be an ice storm, a dreaded condition for adults who must worry about power going out from downed lines and treacherous roads. But to us kids, in the school bus with Mr. Kirby at the helm, ice storms held one delicious facet: when the iced birches were bending down over the road, loaded down with crystals from the night before, the bus would approach them and Mr. Kirby would call out, "Get ready!"
We knew what it meant, that he'd crash through the birches and the loud clatter on the steel, uninsulated roof of the bus was thunderous! We'd all duck and scream joyously in our seats, relishing the adrenaline rush of safe danger.
more Christmas memories tomorrow, I hope.
When I was young and growing up on a rural road, I was blessed to have girlfriends near my age who lived right up the road from me. Carol, Alice and Ginny. We all got into trouble as much as a group of boys!
One of the things we'd do each Christmas is stand in Carol and Alice's kitchen (they are sisters) and on the blackboard next to the phone, we'd write the lyrics out to "The Twelve Days of Christmas."
Then we'd random dial a phone number and when the person answered, we'd lay the phone down and start singing all the way through the song! At the end, one of us would pick up the phone and say, "How did you like that?"
Often, we'd hear the telltale buzz of the phone telling us the person had hung up long ago. But sometimes, people would be so pleased and excited and tell us how much they loved our phone-caroling. We all remember how one lady said, "Oh, could you sing that again so my husband can hear it!"
My father would always take me out driving on one or more evenings to see the Christmas decorations in town. I'd look forward to this so much, while we drove with my mother's stepmother ( Freda, who lived alone since Grandpa died) around the city streets, punctuating the warm air inside the old BelAir with "Oooohs" and "Aahhhs" and "Oh, look over there!"
All the neighboring children would always go caroling from house to house on that New Hampshire backroad. One of the older kids must have made up song sheets, and with mittens pinned to coat sleeves and toboggan caps with knitted balls on top, we trudged through the snow up to front doors, knocked and then stood back and began to sing and sing. We'd sing perhaps five songs at each house, and I'd guess we entertained at 15 or so houses!
I can recall, after presents were opened, running up the road with a big stuffed dog or truck-horsetrailer set to show Carol and Alice! They'd show me what they'd receive and we'd play on the floor with the new toys, the woodstove humming nearby while their mother, Martha, cooked a big dinner in the kitchen.
Do you recall those large, plastic faces of Santa that had a cord coming from behind them, and they would light up when plugged in? People would always have them on their houses, and our house was no different. I wonder if those can still be found.
In New Hampshire, it is tradition to put an electric candle on the windowsill in each window of the house, upstairs and down. Many of the houses were so big, colonial homes with many windows and I wondered who went from room to room twice each night, once to plug them in and once to unplug them before bed.
We'd usually go to my mother's father's home for Christmas dinner. When I grew up, dinner was the noon meal and supper was the evening meal. My parents were divorced, but Dad believed in tradition and so he still went up to Grampa's and Freda's for Thanksgiving and Christmas. After Grandpa died, I started dividing the day in half. The morning was spent with Dad, and the afternoon was spent with Mom and her family. It was hard for me to leave Dad alone on Christmas, I hated that part of it, even though I always looked forward to going up to Mom's and seeing what was left under the tree for me!
Oh, Christmas vacation for us kids! We loved to go sliding on Spofford Hill, up the road about a half a mile. We'd pull our steel runnered sleds up the road, with our ice skates' laces knotted and then looped over our necks. We had winter fun ahead that would last all day!
The hilly pasture, covered with deep snow, was wide and long and had a few dips and rises to it. We would slide and slide and slide ... we never called it sledding, we went "sliding." It was "our" hill, no other kids showed up to slide there. I'm not sure we ever asked permission to play there, but thankfully Mr. Spofford whose old farmhouse stood guard at the top of the hill, did not seem to mind.
When we were tired of climbing back up the hill after the red-faced rush of the pull of gravity, we'd tramp over to the little pond of water at the base of the hill. Someone brought a shovel, and we cleaned it off, slipped on our skates and whooshed around with each, girls and boys laughing so hard, getting along, icy cold toes inside tight skates and runny noses.
In certain winters, the conditions were just right for an activity not many could imagine. If we had a cold winter but little snow, the swamps around us would freeze solid, and we could skate for what felt like miles. In and out of trees and bushes, finding trails that looped through the woods, jumping over branches hanging over the ice. I didn't know then that not everyone has experienced such a thing.
One year, my Dad built from scratch a very large, very heavy double-runner sled. He worked for weeks in the garage and when he proudly pulled it out into the snowy driveway, I climbed up a snowbank and snapped a shot of the sled, with my dog, Chico, sitting on it, with my black and white Kodak.
At least once each winter, there'd be an ice storm, a dreaded condition for adults who must worry about power going out from downed lines and treacherous roads. But to us kids, in the school bus with Mr. Kirby at the helm, ice storms held one delicious facet: when the iced birches were bending down over the road, loaded down with crystals from the night before, the bus would approach them and Mr. Kirby would call out, "Get ready!"
We knew what it meant, that he'd crash through the birches and the loud clatter on the steel, uninsulated roof of the bus was thunderous! We'd all duck and scream joyously in our seats, relishing the adrenaline rush of safe danger.
more Christmas memories tomorrow, I hope.
Tuesday, December 16, 2008
Things going well...
I am really doing pretty well these days. Perhaps it is because I'm taking a good pain med at night now that seems to be helping a lot. Perhaps it is because I feel a heavy load lifted from my weary shoulders, that shadow that haunted me, the fusion surgery.
What changed everything for me was receiving the written report from the doctor who evaluated my bone scan. He said that I lost 8% of my bone mass in less than a year. He also wrote that I am "significantly worse."
It's all out out of my control, and I just can't be having the surgery any time soon. In fact, in contrast to my last post, I am not pushing now to figure out a way to have the surgery. I've let go, and am going to "let God," as they say. I now am accepting who I am, and what I can do...and what I can't. And instead of wishing for better days, right now, I'm able to be in the moment and enjoy those moments as they come.
Today, we drove 55 miles to the town where my husband had an appointment. The snow-covered hills against a bright blue sky were entrancing. I noticed deer trails criss-crossing already the tree-less side hills. Bound up in my CTO, I kept working with the heater and defroster in order to keep the windshield and windows clear in our little truck. It was about 2 degrees this AM.
By the time we got to the appointment, I was feeling horrid from the painful head-sleep of the CTO. But inside, I had such a pleasant visit in the lobby, while waiting, with a couple of local, elderly men, who told me hunting stories, and the one man, now retired from firefighting, has played Santa in the community for 48 years! This year, he was 2 weeks past surgery and using a walker, but he still climbed up onto the fire engine for the parade through town the night after Thanksgiving.
At Walmart, I went in with my CTO and my walking stick, and for the first time, I was just happy being me. What I look like, well, I know it's comical. Especially with the knitted, snow hat on over the wide body of the cranial helmet of the CTO. But that was okay. I'm just me...and it ain't gonna change.
Years ago, I learned a saying: If you don't like your situation, change it. If you can't change it, change your attitude about it.
Well, I spent over 4 years trying to change it. Now, God has changed my attitude. It's a beautiful thing, because I know I don't have the strength or power or will to change my attitude. That is a God-thang.
Dr. Fu's office is proceeding with putting in a recommendation to work comp that I be seen by the endocrinologist in Portland. If it happens, I'll go. I do need to find out how to stop this bone loss. But even if he took new tests and found me ready for the fusion/hardware surgery, I am pretty sure I would not go for the surgery.
I'm not ready to risk it. I've read too many stories of fusion failures, especially from those with osteoporosis. And when it fails, it's a very bad thing. They will go in and take the hardware out, if necessary, but that definitely means a permanent halo.
I gave up my dreams to fly up to Alaska, to drive to Vancouver, BC, to even ever drive again myself. I gave up the plan of getting a travel trailer and going back down to NM to see old stompin' grounds. I'll never get a mini horse or two and train them for the county fair. I won't be able to go to National Cowboy Gathering in Elko, NV to sell spurs with my husband. I won't be hiking through the woods across the road. I will have to get help with my gardening next year.
If I get so sick and pained after riding 35 miles in a nice car, I can't take trips, not even short day trips.
So, I'm going to be happy in my home, with my wonderful husband and best friend. And let go and let God.
What changed everything for me was receiving the written report from the doctor who evaluated my bone scan. He said that I lost 8% of my bone mass in less than a year. He also wrote that I am "significantly worse."
It's all out out of my control, and I just can't be having the surgery any time soon. In fact, in contrast to my last post, I am not pushing now to figure out a way to have the surgery. I've let go, and am going to "let God," as they say. I now am accepting who I am, and what I can do...and what I can't. And instead of wishing for better days, right now, I'm able to be in the moment and enjoy those moments as they come.
Today, we drove 55 miles to the town where my husband had an appointment. The snow-covered hills against a bright blue sky were entrancing. I noticed deer trails criss-crossing already the tree-less side hills. Bound up in my CTO, I kept working with the heater and defroster in order to keep the windshield and windows clear in our little truck. It was about 2 degrees this AM.
By the time we got to the appointment, I was feeling horrid from the painful head-sleep of the CTO. But inside, I had such a pleasant visit in the lobby, while waiting, with a couple of local, elderly men, who told me hunting stories, and the one man, now retired from firefighting, has played Santa in the community for 48 years! This year, he was 2 weeks past surgery and using a walker, but he still climbed up onto the fire engine for the parade through town the night after Thanksgiving.
At Walmart, I went in with my CTO and my walking stick, and for the first time, I was just happy being me. What I look like, well, I know it's comical. Especially with the knitted, snow hat on over the wide body of the cranial helmet of the CTO. But that was okay. I'm just me...and it ain't gonna change.
Years ago, I learned a saying: If you don't like your situation, change it. If you can't change it, change your attitude about it.
Well, I spent over 4 years trying to change it. Now, God has changed my attitude. It's a beautiful thing, because I know I don't have the strength or power or will to change my attitude. That is a God-thang.
Dr. Fu's office is proceeding with putting in a recommendation to work comp that I be seen by the endocrinologist in Portland. If it happens, I'll go. I do need to find out how to stop this bone loss. But even if he took new tests and found me ready for the fusion/hardware surgery, I am pretty sure I would not go for the surgery.
I'm not ready to risk it. I've read too many stories of fusion failures, especially from those with osteoporosis. And when it fails, it's a very bad thing. They will go in and take the hardware out, if necessary, but that definitely means a permanent halo.
I gave up my dreams to fly up to Alaska, to drive to Vancouver, BC, to even ever drive again myself. I gave up the plan of getting a travel trailer and going back down to NM to see old stompin' grounds. I'll never get a mini horse or two and train them for the county fair. I won't be able to go to National Cowboy Gathering in Elko, NV to sell spurs with my husband. I won't be hiking through the woods across the road. I will have to get help with my gardening next year.
If I get so sick and pained after riding 35 miles in a nice car, I can't take trips, not even short day trips.
So, I'm going to be happy in my home, with my wonderful husband and best friend. And let go and let God.
Friday, December 12, 2008
The Day After
So the journey goes...it never ends, even when you think you've written the ending.
This morning, I woke up with the strong feeling that this is not the end. Not yet. Maybe this is what God wants, for me not to have the fusion. But I'm not getting that signal yet. So, until then, I will keep on pushing toward the goal.
I wrote up a letter and faxed it to Dr. Fu. I told him how the bone scan technician had been mean and rude to me, and perhaps she had diverted herself from inputting information into the program or setting up the scan machine, or who knows? I also told him that I'd learned that a scan can be done of the forearm to get additional, bone mass readings.
I knew this because I received, last night, a helpful email from an online friend who lives east of Portland, OR. She is also a TCI patient, and she told me that she had wasted lots of time taking drugs that did not help, and then she went to a Dr. Dana Madison of OHSU (Oregon Health and Science Univ.). He put her on Forteo shots for six months, he communicated with Dr. B in NY and he scanned her forearm. She was well enough for the surgery, which she had not too long ago.
The phone rang and it was Dr. Fu. He is remarkable! He talked with me, looked again at the bone scan I had recently, compared it to the last one I'd had, and felt that the mean technician probably didn't change anything, and that there was no reason to do it over. He had looked up the neurosurgeon for a spinal injury center who actually comes once a week to a town 35 miles from me, and he is going to refer me to him. Dr. Belza.
I told him about Dr. Madison and he was interested right away. He is going to call Dr. Madison and tell him about my situation. I feel so good about this, that I wasn't just given up on, that others are fighting for me, too.
Dr. Fu said, "We didn't get the results we wanted, but I really want to help you."
So, I'm back on the wheel again, nothing has really stopped yet. Maybe we'll find something new, and at the same time, Dr. Fu will learn something to use with his cancer patients.
Thanks for your responses, I appreciate those who care so much, more than I can say.
Thank God.
This morning, I woke up with the strong feeling that this is not the end. Not yet. Maybe this is what God wants, for me not to have the fusion. But I'm not getting that signal yet. So, until then, I will keep on pushing toward the goal.
I wrote up a letter and faxed it to Dr. Fu. I told him how the bone scan technician had been mean and rude to me, and perhaps she had diverted herself from inputting information into the program or setting up the scan machine, or who knows? I also told him that I'd learned that a scan can be done of the forearm to get additional, bone mass readings.
I knew this because I received, last night, a helpful email from an online friend who lives east of Portland, OR. She is also a TCI patient, and she told me that she had wasted lots of time taking drugs that did not help, and then she went to a Dr. Dana Madison of OHSU (Oregon Health and Science Univ.). He put her on Forteo shots for six months, he communicated with Dr. B in NY and he scanned her forearm. She was well enough for the surgery, which she had not too long ago.
The phone rang and it was Dr. Fu. He is remarkable! He talked with me, looked again at the bone scan I had recently, compared it to the last one I'd had, and felt that the mean technician probably didn't change anything, and that there was no reason to do it over. He had looked up the neurosurgeon for a spinal injury center who actually comes once a week to a town 35 miles from me, and he is going to refer me to him. Dr. Belza.
I told him about Dr. Madison and he was interested right away. He is going to call Dr. Madison and tell him about my situation. I feel so good about this, that I wasn't just given up on, that others are fighting for me, too.
Dr. Fu said, "We didn't get the results we wanted, but I really want to help you."
So, I'm back on the wheel again, nothing has really stopped yet. Maybe we'll find something new, and at the same time, Dr. Fu will learn something to use with his cancer patients.
Thanks for your responses, I appreciate those who care so much, more than I can say.
Thank God.
Thursday, December 11, 2008
I'm crushed
Dr Fu called this morning, and my bones are actually worse than they were a year ago. After 18 months of IV pamidronate treatments. Actonel every week for five years. I am in tears.
I was so counting on having the fusion, getting the weight of my head up off my spine and brainstem. Having a life again. I had so many high hopes. You have to have that when you are prepping yourself for a surgery like this fusion surgery is. You have to build it up as a savior of some kind, you have to see brighter futures down the road which includes immeasurable pain.
My husband and I planned on getting a camper, putting a hitch on the car, traveling all over, flying up to Alaska to see it for the first time. I pushed those hopes ahead, post-surgery, post-halo. For me and now for him, it won't happen because I can hardly stand riding in the car to town and back, one mile away. My condition is holding him back, his happy retirement back.
I can't fly down to see my son, I will have to rely upon him taking the time to come see us. I had such plans...
I'm afraid if my head keeps settling, I will be in a halo for life.
I look to the Lord for my help for vain is the help of man. Oh, boy, do I know that one! Vain is the help of man. The first neurosurgeon who should have put me in traction and into a halo, who gave me "less than the minimum standard of care. Who sent me home with a small, flexible collar and made me take that off in six weeks. His "help" was certainly vain, and so far, no human has helped me to get this fixed yet.
I know the Lord has a plan. I survive on that thought.
And I prayed to him several times that if I am not supposed to get the fusion, if the fusion would fail and cause me to be worse, please let it never start...let Dr. Fu say that "no surgery."
I should be rejoicing, but I am grieving, tempered with the knowledge that God answered my prayers.
Dr. Fu said no more pamidronate because it is not working, that he would have work comp approve Avista for me, a daily pill, and perhaps Forteo, daily shots. He would also refer me to a spinal cord injury center.
In time, I will grasp this and be fine with it, but right now, tears course down my cheeks. I knew today would be momentous, it would either mean "go" or "no." But I never expected a "no." I had that whole Tethered Cord surgery in preparation for a fusion I'll never have! I'm much worse off in below the waist symptoms since the TC surgery a year ago. I'm confused and grieving and yes, worried about my future.
Lots of new symptoms started up in the last few months. And I turned my head a certain way a couple of months ago, felt a clunk, and have had a lot more occipital pain and symptoms since then.
Sigh...
For me and so many others, when will it end? Oh Lord, when will it end.
I'm sorry, dear readers, some of you (well, one of you) gets so upset when I show my honest face here, and I'm so sorry to cause you heartache too. I wanted so badly to come here with a happy post, I'm on my way to "better."
Quite possibly for me, better comes when I cross over.
I was so counting on having the fusion, getting the weight of my head up off my spine and brainstem. Having a life again. I had so many high hopes. You have to have that when you are prepping yourself for a surgery like this fusion surgery is. You have to build it up as a savior of some kind, you have to see brighter futures down the road which includes immeasurable pain.
My husband and I planned on getting a camper, putting a hitch on the car, traveling all over, flying up to Alaska to see it for the first time. I pushed those hopes ahead, post-surgery, post-halo. For me and now for him, it won't happen because I can hardly stand riding in the car to town and back, one mile away. My condition is holding him back, his happy retirement back.
I can't fly down to see my son, I will have to rely upon him taking the time to come see us. I had such plans...
I'm afraid if my head keeps settling, I will be in a halo for life.
I look to the Lord for my help for vain is the help of man. Oh, boy, do I know that one! Vain is the help of man. The first neurosurgeon who should have put me in traction and into a halo, who gave me "less than the minimum standard of care. Who sent me home with a small, flexible collar and made me take that off in six weeks. His "help" was certainly vain, and so far, no human has helped me to get this fixed yet.
I know the Lord has a plan. I survive on that thought.
And I prayed to him several times that if I am not supposed to get the fusion, if the fusion would fail and cause me to be worse, please let it never start...let Dr. Fu say that "no surgery."
I should be rejoicing, but I am grieving, tempered with the knowledge that God answered my prayers.
Dr. Fu said no more pamidronate because it is not working, that he would have work comp approve Avista for me, a daily pill, and perhaps Forteo, daily shots. He would also refer me to a spinal cord injury center.
In time, I will grasp this and be fine with it, but right now, tears course down my cheeks. I knew today would be momentous, it would either mean "go" or "no." But I never expected a "no." I had that whole Tethered Cord surgery in preparation for a fusion I'll never have! I'm much worse off in below the waist symptoms since the TC surgery a year ago. I'm confused and grieving and yes, worried about my future.
Lots of new symptoms started up in the last few months. And I turned my head a certain way a couple of months ago, felt a clunk, and have had a lot more occipital pain and symptoms since then.
Sigh...
For me and so many others, when will it end? Oh Lord, when will it end.
I'm sorry, dear readers, some of you (well, one of you) gets so upset when I show my honest face here, and I'm so sorry to cause you heartache too. I wanted so badly to come here with a happy post, I'm on my way to "better."
Quite possibly for me, better comes when I cross over.
Tuesday, December 9, 2008
Saturday, we drove to our bigger town to do a small bit of Christmas shopping.
The sky punctuated by gilded, rugged clouds, the river down below hemmed by basalt
cliffs which all fed my soul as I realised how long it had been since I'd been "out."
A week.
The Columbia Hills are greening with tiny blades of grass that will soon be "comfortered" by a
blanket of snow. Cattle nibbled on old scrub and fresh delights, and I dined on the sights.
We went to one small store, a discount membership store we shop at a lot, and I got lost
in scanning each aisle, thinking specifically of the people on my mental list, their likes and
dislikes, what I know of them and mourning the things I don't know.
Gift giving does not take us away from the true meaning of Christmas. In a way, it puts us into a mode of dwelling on the hearts of loved ones, if we allow those gentle nudgings.
Next, we parked in the handicapped spot in front of the discount grocery outlet and walked through for a few items. I reveled in the visual feel of the checker placing my items into the cloth, reusable bags I brought in for my carry-outs.
We stopped for a casual lunch, amiably visiting over french fries and turkey sandwiches and milkshakes.
Lastly, to the hardware store. I elect to go inside with my husband, to experience the sights,
the sounds of Sawyer's True Value and their chosen decorations of the season. While Pete
browsed through tools and accessories, in my Johnson CTO I went up and down aisles looking for sales on discontinued items.
Ah, the "Christmas lights and decorations" aisle. My viewpoint may have been reined in like a work horse in blinders, but I was determined to experience the joy of the glitter and the fascination with the sparkle.
As I rounded the corner, I saw four big kids in the aisle which caught my attention.
And I stopped and drifted over to look at something else. I was finely aware of how I looked in the big brace, and I just didn't have the strength or courage at that moment to endure questioning looks. I didn't have the energy to smile and take away their embarrassment, their discomfort. Doing so can be such a job sometimes.
My feet started zinging, the strength drained away in waves, the profound bone-pain swelled through me. I found my husband and asked for the keys to the car. I couldn't get out there fast enough to hide in the car away from looks, inquisitive, sympathetic or otherwise.
Previously, I had readjusted the straps on my CTO, thinking perhaps they were holding me a nano of a millimeter in the wrong spot, causing the dreaded pulling-down into painful neuro-sleep. But the ride home proved things were still all wrong and by the time I got there, I struggled out of the passenger side of the car to open the gate, weakly climbed the small hill up to the house. I feebly unsnapped the four clasps that hold the CTO on, as well as the wide velcro'd band around my forehead and sloughed off the brace like a snake weary of dragging around his old skin.
Stumbling down the hall to the guest room, I carefully slid into bed and slept 90 minutes, a scenario played out every time these days that I go to our shopping town.
The world narrows, the aperture tightens.
The sky punctuated by gilded, rugged clouds, the river down below hemmed by basalt
cliffs which all fed my soul as I realised how long it had been since I'd been "out."
A week.
The Columbia Hills are greening with tiny blades of grass that will soon be "comfortered" by a
blanket of snow. Cattle nibbled on old scrub and fresh delights, and I dined on the sights.
We went to one small store, a discount membership store we shop at a lot, and I got lost
in scanning each aisle, thinking specifically of the people on my mental list, their likes and
dislikes, what I know of them and mourning the things I don't know.
Gift giving does not take us away from the true meaning of Christmas. In a way, it puts us into a mode of dwelling on the hearts of loved ones, if we allow those gentle nudgings.
Next, we parked in the handicapped spot in front of the discount grocery outlet and walked through for a few items. I reveled in the visual feel of the checker placing my items into the cloth, reusable bags I brought in for my carry-outs.
We stopped for a casual lunch, amiably visiting over french fries and turkey sandwiches and milkshakes.
Lastly, to the hardware store. I elect to go inside with my husband, to experience the sights,
the sounds of Sawyer's True Value and their chosen decorations of the season. While Pete
browsed through tools and accessories, in my Johnson CTO I went up and down aisles looking for sales on discontinued items.
Ah, the "Christmas lights and decorations" aisle. My viewpoint may have been reined in like a work horse in blinders, but I was determined to experience the joy of the glitter and the fascination with the sparkle.
As I rounded the corner, I saw four big kids in the aisle which caught my attention.
And I stopped and drifted over to look at something else. I was finely aware of how I looked in the big brace, and I just didn't have the strength or courage at that moment to endure questioning looks. I didn't have the energy to smile and take away their embarrassment, their discomfort. Doing so can be such a job sometimes.
My feet started zinging, the strength drained away in waves, the profound bone-pain swelled through me. I found my husband and asked for the keys to the car. I couldn't get out there fast enough to hide in the car away from looks, inquisitive, sympathetic or otherwise.
Previously, I had readjusted the straps on my CTO, thinking perhaps they were holding me a nano of a millimeter in the wrong spot, causing the dreaded pulling-down into painful neuro-sleep. But the ride home proved things were still all wrong and by the time I got there, I struggled out of the passenger side of the car to open the gate, weakly climbed the small hill up to the house. I feebly unsnapped the four clasps that hold the CTO on, as well as the wide velcro'd band around my forehead and sloughed off the brace like a snake weary of dragging around his old skin.
Stumbling down the hall to the guest room, I carefully slid into bed and slept 90 minutes, a scenario played out every time these days that I go to our shopping town.
The world narrows, the aperture tightens.
I'm as good once as I ever was...
...but what if you're not.
And how hard does the curtain crash down when you finally get the message: you are not a part of a world you once dwelled in. The show is over, at least for you. You've already taken the final bow and didn't even know it at the time.
Just how hard does that curtain fall? Does the thick, luxurious velvet even make a sound? Did anyone else notice it?
It's one of those things we don't like to talk about. We say we treasure honesty and baring of the soul, but when it hurts too much, we change the channel. I know I do. I can't do anything about Somalia so I better not think about it too much. Ah, there's "What Not to Wear!"
Click.
It is not an overt thing on the part of that circle of friends that went on spinning while I had to step off for awhile. It wasn't something of which they were aware, their thoughts or actions were never intentional.
No, I have learned it goes far deeper than that, an achingly slow evolution of inclusion or exclusion, of thoughts, of heart, of desires to even be with me, such things that dwell in the folds of the curtain backstage and of which most, if not all, are unaware.
So, off that planet whirls into the horizon and I remain behind, treading water, and looking for the path that will lead me to satisfaction and fulfillment in a different land which lay before me the moment a big, Paint horse stopped in his tracks and I tilted forward over the saddle.
And how hard does the curtain crash down when you finally get the message: you are not a part of a world you once dwelled in. The show is over, at least for you. You've already taken the final bow and didn't even know it at the time.
Just how hard does that curtain fall? Does the thick, luxurious velvet even make a sound? Did anyone else notice it?
It's one of those things we don't like to talk about. We say we treasure honesty and baring of the soul, but when it hurts too much, we change the channel. I know I do. I can't do anything about Somalia so I better not think about it too much. Ah, there's "What Not to Wear!"
Click.
It is not an overt thing on the part of that circle of friends that went on spinning while I had to step off for awhile. It wasn't something of which they were aware, their thoughts or actions were never intentional.
No, I have learned it goes far deeper than that, an achingly slow evolution of inclusion or exclusion, of thoughts, of heart, of desires to even be with me, such things that dwell in the folds of the curtain backstage and of which most, if not all, are unaware.
So, off that planet whirls into the horizon and I remain behind, treading water, and looking for the path that will lead me to satisfaction and fulfillment in a different land which lay before me the moment a big, Paint horse stopped in his tracks and I tilted forward over the saddle.
Monday, December 1, 2008
On Runnin' Out
So now I know.
I know how badly I need surgery.
I know 2 Tylenol don't help the pain.
I know 3 Advil don't help either.
I know another prescribed pain medication, taken in a double dose, doesn't touch it.
What I didn't know.
I didn't know that my doctor was going to be away from Wednesday night last week until Tuesday morning this week.
I didn't know that I was going to be running a few days short on my pain med of choice, oxycodone.
I didn't know, when the clinic called on Wednesday to ask if I'd mind pushing my doctor appointment out one day, from Monday to Tuesday, that I'd be out of my medication. I readily agreed because, hey, I'm agreeable.
I didn't know, when I faxed my request on Friday for a few pills to get me through until I see my doctor, that no one was in the whole clinic to see it.
I didn't know just how bad the pain was, or how well the oxy was taking care of it.
So, it has been one heck of a last 36 hours, and I have 14 or so more hours to go.
I also know that I would not really be having withdrawals at least at this point in no pain med that I'm used to. That particular delight has not hit me at all: no buzzy head, loss of balance, dizzy, etc.
just pain. I am not going through withdrawals, I'm just hurting in all the places that the oxy was helping, even if only a little bit.
Today, I called twice to the clinic to see if they had some pills to get me through until I see my doc tomorrow morning ( and then somehow get the 35 miles to the pharmacy). Finally, at 4 pm they called. I was in bed with four ice gel paks under me, dark room, trying to survive. They said they would not give the meds to my husband, so I got up and rode with him down to the clinic.
Once there, I find they are giving me a script for 5 pills! I can't get to the pharmacy that late and as bad as I feel. We just drove home with a piece of paper.
I'll make it though. I'll cowboy up. And tough it out.
Speaking of "cowboy up," tonight I watched "8 Seconds" on TV, the first time I'd seen it. When it first came out, I wanted so badly to see it, but we were way out in the middle of nowhere on a ranch, and movie theaters were a faint memory. I'd heard of Lane Frost's death after he rode the bull, Redrock, at Cheyenne. The movie is his story.
I was so surprised at the great acting in the movie, even Stephen Baldwin starring as Tuff Hedeman. Luke Perry played the role of Lane. The movie kept me riveted for two hours, and completely took my mind off my central pain. But I cried so much at the end. Even though I knew the ending, the movie was just too real. And all the shots of the real Lane Frost at the end, about ten minutes of photographs and riding clips.
So, anyway, now I know. I hope this never happens again, this running out of meds. It's been pretty darn rugged.
I know how badly I need surgery.
I know 2 Tylenol don't help the pain.
I know 3 Advil don't help either.
I know another prescribed pain medication, taken in a double dose, doesn't touch it.
What I didn't know.
I didn't know that my doctor was going to be away from Wednesday night last week until Tuesday morning this week.
I didn't know that I was going to be running a few days short on my pain med of choice, oxycodone.
I didn't know, when the clinic called on Wednesday to ask if I'd mind pushing my doctor appointment out one day, from Monday to Tuesday, that I'd be out of my medication. I readily agreed because, hey, I'm agreeable.
I didn't know, when I faxed my request on Friday for a few pills to get me through until I see my doctor, that no one was in the whole clinic to see it.
I didn't know just how bad the pain was, or how well the oxy was taking care of it.
So, it has been one heck of a last 36 hours, and I have 14 or so more hours to go.
I also know that I would not really be having withdrawals at least at this point in no pain med that I'm used to. That particular delight has not hit me at all: no buzzy head, loss of balance, dizzy, etc.
just pain. I am not going through withdrawals, I'm just hurting in all the places that the oxy was helping, even if only a little bit.
Today, I called twice to the clinic to see if they had some pills to get me through until I see my doc tomorrow morning ( and then somehow get the 35 miles to the pharmacy). Finally, at 4 pm they called. I was in bed with four ice gel paks under me, dark room, trying to survive. They said they would not give the meds to my husband, so I got up and rode with him down to the clinic.
Once there, I find they are giving me a script for 5 pills! I can't get to the pharmacy that late and as bad as I feel. We just drove home with a piece of paper.
I'll make it though. I'll cowboy up. And tough it out.
Speaking of "cowboy up," tonight I watched "8 Seconds" on TV, the first time I'd seen it. When it first came out, I wanted so badly to see it, but we were way out in the middle of nowhere on a ranch, and movie theaters were a faint memory. I'd heard of Lane Frost's death after he rode the bull, Redrock, at Cheyenne. The movie is his story.
I was so surprised at the great acting in the movie, even Stephen Baldwin starring as Tuff Hedeman. Luke Perry played the role of Lane. The movie kept me riveted for two hours, and completely took my mind off my central pain. But I cried so much at the end. Even though I knew the ending, the movie was just too real. And all the shots of the real Lane Frost at the end, about ten minutes of photographs and riding clips.
So, anyway, now I know. I hope this never happens again, this running out of meds. It's been pretty darn rugged.
Thursday, November 27, 2008
Bone scan...now on to the next thing
Up early waiting for the pain to subside. It's Thanksgiving. It will be just the two of us, as usual, minus our son who is married and 900 miles away. I'm sure his holiday will be happy and filled with laughing family, that they will be with his wife's family who live close. This gives us much to be thankful for. A happy child. And so much more.
Yesterday was the bone density test. It was quite strange, how it went, due to a snarky technician.
As we drove the 35 miles through very dense fog that morning, I suffered silently in so much pain. Deep, central nerve pain throughout my body, especially in my hips and legs. I had taken a pain pill at 6:30 am, and at 8, while on the drive, I took a 2nd one, since the first was not working. As I struggled out of the car at the "bone scan place," I was hurting so badly, and the weakness was profound.
I was the first one in to be tested that day, and never saw another patient in there while I was there. I chatted with the woman at the desk, who was quite nice. And we happened to visit about how nice people were, in general, in the northwest and this area in particular.
I was called back by a middle-aged, blond woman and asked to remove my shoes, place my things on a chair and stand to be weighed. I've not gained a pound in a year, very thankful for that. With the ebbing ability to do much of anything at all, I work each day to eat healthy, cook healthier. The hoped-for payback would be weight loss, but I've chosen to find victories where they hide.
Then I was shown into the room for the scan, and asked to sit on the table. The woman (she never told me her name and I didn't see a name tag) at first could not find me in her system on the computer but I assured her I'd been there before.
She found my name, clicked on it, and immediately turned to me and said, "I won't do this scan today."
Of course, I asked why, and Nameless said, "It hasn't been a year since your last scan. Your insurance will NOT pay for this."
I opened my mouth to explain, but Nameless sniped, "You will have to pay for this yourself. You have to know that. I won't do this scan today."
Again, I tried to tell her that this is a pre-surgical test, but she interrupted me again. To me, it felt like she was cramming my words right back into my mouth.
I asked, "How much are these scans?"
"One hundred and eighty five or more. They've gone up."
"Okay, I'll pay for it."
"But you have to see that you will not be reimbursed! Insurance demands that bone scans are taken at least a year apart, and most insurance requirements are two years."
I said, "This is workers' comp."
"Work comp is worse!" came the return volley.
Certain that I was talking into the wind without my words reaching her brain, I kept trying to gently break through that wall of "know-it-allism" while Nameless avoided my eyes while looking right into them.
Each time, she headed me off at the pass without a bit of caring for my situation. I could not help it, I started to cry. She did not recognize it however, did not hand me the kleenex box on the counter behind her, even when I pulled a rough, paper hand towel from the dispenser to blow my nose.
Finally, thinking that I could break through to her, I sobbed, "With the brace off, everything crushes down and it's hard for me to handle this and I'd like a little sympathy from you about it."
("Sympathy" was the wrong word for me to use, but it is what came to my brain. I would have said "understanding." Sympathy really demotes you to a woman like this.) And it was so odd, because she had such a controlled way of talking, same decible level, so unemotional. She was a Stealth Snark, the worst kind.
Each time, over and over, I tried to tell her it was okay, this was a different situation, I wasn't just having a bone scan for a lark. Once, she snipped, "Okay, enough of this. I don't have time for this, I'm busy. I'll do the scan but you have to be aware that insurance will not pay for it."
I said I was aware.
She said, "Dr Fu would never order this scan now, he'd know your insurance would not pay for it."
To me, it was if, with this statement, I was on the defense stand. She felt I was lying about Dr Fu, even though Dr. Fu wrote the order and his secretary made the appointment for me.
I replied, through tears, "I was just in his office last week! He DID order this test. I need this test and the results in order to move ahead with a surgery I really need immediately!"
Nameless Stealth Snark couldn't have cared less. "Dr. Fu would not have ordered this test in normal situations."
"Yes, that is what I'm trying to tell you! This is not normal."
With a cloud of dismissiveness around her, NSS looked at the screen and said, "All I need is to hear that you were told by me that your insurance will not pay for this and you have to pay for it yourself, and then we'll do the scan."
"I told you I understood ten minutes ago!" I sobbed.
We proceeded with the painless scan, a test I've had several times and had expected to proceed easily. I dabbed at my nose with the paper towel while she put foam blocks under my knees and instructed me on how to place my legs and so forth. I held it all in, the only sign of my emotional pain seeped out of my eyes while I silently coached myself not to cry.
You know what? When I got up from the table, I apologized to HER. I guess, instinctively, I know what I need to survive, and I did not need to walk out of there mad, things unresolved. I wasn't going to be teaching her any lessons. She was probably about 50 and had many years behind her, learning her behavior. I apologized for my own good.
And she said she was sorry. But it was insincere.
As I walked down the hall and toward the safety of my loving husband waiting in the parked car outside, there was not another soul in the office waiting for a bone scan.
She said that Dr. Fu would not get the scan and evaluation until the middle of next week. And she said that if I would call in TCI's fax number, she would fax the scan immediately to Dr. B. I thanked her profusely and left.
Yesterday was the bone density test. It was quite strange, how it went, due to a snarky technician.
As we drove the 35 miles through very dense fog that morning, I suffered silently in so much pain. Deep, central nerve pain throughout my body, especially in my hips and legs. I had taken a pain pill at 6:30 am, and at 8, while on the drive, I took a 2nd one, since the first was not working. As I struggled out of the car at the "bone scan place," I was hurting so badly, and the weakness was profound.
I was the first one in to be tested that day, and never saw another patient in there while I was there. I chatted with the woman at the desk, who was quite nice. And we happened to visit about how nice people were, in general, in the northwest and this area in particular.
I was called back by a middle-aged, blond woman and asked to remove my shoes, place my things on a chair and stand to be weighed. I've not gained a pound in a year, very thankful for that. With the ebbing ability to do much of anything at all, I work each day to eat healthy, cook healthier. The hoped-for payback would be weight loss, but I've chosen to find victories where they hide.
Then I was shown into the room for the scan, and asked to sit on the table. The woman (she never told me her name and I didn't see a name tag) at first could not find me in her system on the computer but I assured her I'd been there before.
She found my name, clicked on it, and immediately turned to me and said, "I won't do this scan today."
Of course, I asked why, and Nameless said, "It hasn't been a year since your last scan. Your insurance will NOT pay for this."
I opened my mouth to explain, but Nameless sniped, "You will have to pay for this yourself. You have to know that. I won't do this scan today."
Again, I tried to tell her that this is a pre-surgical test, but she interrupted me again. To me, it felt like she was cramming my words right back into my mouth.
I asked, "How much are these scans?"
"One hundred and eighty five or more. They've gone up."
"Okay, I'll pay for it."
"But you have to see that you will not be reimbursed! Insurance demands that bone scans are taken at least a year apart, and most insurance requirements are two years."
I said, "This is workers' comp."
"Work comp is worse!" came the return volley.
Certain that I was talking into the wind without my words reaching her brain, I kept trying to gently break through that wall of "know-it-allism" while Nameless avoided my eyes while looking right into them.
Each time, she headed me off at the pass without a bit of caring for my situation. I could not help it, I started to cry. She did not recognize it however, did not hand me the kleenex box on the counter behind her, even when I pulled a rough, paper hand towel from the dispenser to blow my nose.
Finally, thinking that I could break through to her, I sobbed, "With the brace off, everything crushes down and it's hard for me to handle this and I'd like a little sympathy from you about it."
("Sympathy" was the wrong word for me to use, but it is what came to my brain. I would have said "understanding." Sympathy really demotes you to a woman like this.) And it was so odd, because she had such a controlled way of talking, same decible level, so unemotional. She was a Stealth Snark, the worst kind.
Each time, over and over, I tried to tell her it was okay, this was a different situation, I wasn't just having a bone scan for a lark. Once, she snipped, "Okay, enough of this. I don't have time for this, I'm busy. I'll do the scan but you have to be aware that insurance will not pay for it."
I said I was aware.
She said, "Dr Fu would never order this scan now, he'd know your insurance would not pay for it."
To me, it was if, with this statement, I was on the defense stand. She felt I was lying about Dr Fu, even though Dr. Fu wrote the order and his secretary made the appointment for me.
I replied, through tears, "I was just in his office last week! He DID order this test. I need this test and the results in order to move ahead with a surgery I really need immediately!"
Nameless Stealth Snark couldn't have cared less. "Dr. Fu would not have ordered this test in normal situations."
"Yes, that is what I'm trying to tell you! This is not normal."
With a cloud of dismissiveness around her, NSS looked at the screen and said, "All I need is to hear that you were told by me that your insurance will not pay for this and you have to pay for it yourself, and then we'll do the scan."
"I told you I understood ten minutes ago!" I sobbed.
We proceeded with the painless scan, a test I've had several times and had expected to proceed easily. I dabbed at my nose with the paper towel while she put foam blocks under my knees and instructed me on how to place my legs and so forth. I held it all in, the only sign of my emotional pain seeped out of my eyes while I silently coached myself not to cry.
You know what? When I got up from the table, I apologized to HER. I guess, instinctively, I know what I need to survive, and I did not need to walk out of there mad, things unresolved. I wasn't going to be teaching her any lessons. She was probably about 50 and had many years behind her, learning her behavior. I apologized for my own good.
And she said she was sorry. But it was insincere.
As I walked down the hall and toward the safety of my loving husband waiting in the parked car outside, there was not another soul in the office waiting for a bone scan.
She said that Dr. Fu would not get the scan and evaluation until the middle of next week. And she said that if I would call in TCI's fax number, she would fax the scan immediately to Dr. B. I thanked her profusely and left.
Tuesday, November 25, 2008
rejection, good day, bad morning
I just woke up with pain so bad that it played a starring role in the dream I was having.
I was young, vibrant, strong and healthy. I worked on a dude string, and I couldn't saddle a small pony because of the horrific pain and weakness I was experiencing.
When I awakened, the pain was so intense, below the waist and all the way down to my feet. I stumbled into the kitchen and took one oxycodone, walked away and then turned back and took another. I had to hit this one where it hurt, literally.
Why? Something like this is always caused by activity. It must have been that long mountain trail ride I went on yesterday, oh, how glorious with the surrounding peaks dusted in snow. I knew I'd pay for it but it would be worth it.
Or it was the relaxing swim I enjoyed at the neighborhood pool a mile away. First time there, I was able to soak off all the aching muscles from my great ride earlier in the day. I didn't swim too much, but it DID feel so wonderful to feel normal again. I took it slow, knowing I needed to build my muscle mass back up...oh, do I ever!
Or it was the nice little walk through the woods I took when I got home from the swim. I knew I shouldn't go far, so I took it easy, and was so blessed by the smell of the damp woods. I was not lonely ... I had deer tracks and turkey feathers and the nearby "gobble" from a tom when I whistled a bit. A perfect ending to a perfect day!
It was probably due to all of these things I did, this pain that caused me to writhe a bit and to gasp aloud, so intense, so deeply profound and breathtaking...I prayed for respite through tears. And waited for the drugs to kick in.
Or, it wasn't due to any of these things because I didn't do any of them. I didn't vacuum yesterday...I didn't sweep...I didn't clean house...I didn't play ball on the lawn with the dog, I didn't walk over to my neighbor's to chat, I didn't I didn't I didn't I didn't I didn't I didn't!
What I DID do was go grocery shopping. We drove in our comfy car to our shopping town, I walked through one small store, a hardware type store...and I walked through the large Grocery Outlet store because the prices are so cheap there and we need cheap!
All concrete surfaces. In very comfy walking shoes. Didn't I think first? Why didn't I realise I can't do something like the extreme sport of grocery shopping on a day when I feel halfway good! I mean, that is right up there with kite surfing, rock climbing, skateboarding, cross country skiing, I should have known better!
Sorry for the sarcasm. It's hard to choke down some sort of anger or bitterness when it hurts this much.
Rejection? I went to the drug store while in our shopping town 35 miles away from home, and once again drove up to the drive up window and asked if work comp had authorized my Lidoderm patches...yet. The pain I feel this morning is exactly the pain that the patches really work on. I can put them on at night and not have to wake up in quite this bad a shape.
I first asked for a refill in early October, on the 2nd. I was told work comp would not authorize the refill (even though the box says it has a refill on it). I was told it would have to go into review. I waited until 3 weeks later when I got the rejection letter from work comp, saying the patches were denied.
I asked my PCP to file an appeal, so he wrote a letter explaining that when I use the patches, I don't have to take as many oral meds. That was 2 weeks ago.
Yesterday, the pharmacist told me that he could refill the RX, so we went and participated in the extreme sport of grocery shopping and then returned. I walked in this time, needing to use the rest room. Braced up in my CTO, I expected I was picking up the patches that would help me so much.
What I was expecting and what I got were two different things, of course. The gal said the patches were still being denied. I wanted to cry. I was so weak standing there in the vest. I felt so vulnerable, so tender, holding up the line behind me (couldn't look behind me, but when I finally looked after feeling so guilty for ten minutes, I saw no one there). I felt such a "nothing" as I waited for some pencil pusher in an office in CA to decide if I should suffer or not. Obviously, he has never experienced this sort of pain.
Tears started to form because the rejection pushed so many buttons previously installed by neurosurgeons, neurologists, doctors of all kinds who disrespected me and told me I had emotional problems (until Dr. B so easily found that my neck was still broken). I walked out of the drug store feeling stepped upon, a ratty old door mat no one notices anymore, that ought to be replaced because it is worn out, used up and ugly.
In spite of all of this, however, I did have a nice day yesterday, with less pain than usual. Perhaps the pain this morning is also because I took less pain meds yesterday...so, as they leeched out of my body, the true tenants, the ones who sub-let to pain meds on a temporary and ephemeral basis, began to rock it on out in a no-holds-barred parte'. One I didn't like being invited to.
pardon all the metaphors and analogies this morning!! Sometimes, for a writer, they bottle up and then blow the cork...uh oh...here I go again!
I was young, vibrant, strong and healthy. I worked on a dude string, and I couldn't saddle a small pony because of the horrific pain and weakness I was experiencing.
When I awakened, the pain was so intense, below the waist and all the way down to my feet. I stumbled into the kitchen and took one oxycodone, walked away and then turned back and took another. I had to hit this one where it hurt, literally.
Why? Something like this is always caused by activity. It must have been that long mountain trail ride I went on yesterday, oh, how glorious with the surrounding peaks dusted in snow. I knew I'd pay for it but it would be worth it.
Or it was the relaxing swim I enjoyed at the neighborhood pool a mile away. First time there, I was able to soak off all the aching muscles from my great ride earlier in the day. I didn't swim too much, but it DID feel so wonderful to feel normal again. I took it slow, knowing I needed to build my muscle mass back up...oh, do I ever!
Or it was the nice little walk through the woods I took when I got home from the swim. I knew I shouldn't go far, so I took it easy, and was so blessed by the smell of the damp woods. I was not lonely ... I had deer tracks and turkey feathers and the nearby "gobble" from a tom when I whistled a bit. A perfect ending to a perfect day!
It was probably due to all of these things I did, this pain that caused me to writhe a bit and to gasp aloud, so intense, so deeply profound and breathtaking...I prayed for respite through tears. And waited for the drugs to kick in.
Or, it wasn't due to any of these things because I didn't do any of them. I didn't vacuum yesterday...I didn't sweep...I didn't clean house...I didn't play ball on the lawn with the dog, I didn't walk over to my neighbor's to chat, I didn't I didn't I didn't I didn't I didn't I didn't!
What I DID do was go grocery shopping. We drove in our comfy car to our shopping town, I walked through one small store, a hardware type store...and I walked through the large Grocery Outlet store because the prices are so cheap there and we need cheap!
All concrete surfaces. In very comfy walking shoes. Didn't I think first? Why didn't I realise I can't do something like the extreme sport of grocery shopping on a day when I feel halfway good! I mean, that is right up there with kite surfing, rock climbing, skateboarding, cross country skiing, I should have known better!
Sorry for the sarcasm. It's hard to choke down some sort of anger or bitterness when it hurts this much.
Rejection? I went to the drug store while in our shopping town 35 miles away from home, and once again drove up to the drive up window and asked if work comp had authorized my Lidoderm patches...yet. The pain I feel this morning is exactly the pain that the patches really work on. I can put them on at night and not have to wake up in quite this bad a shape.
I first asked for a refill in early October, on the 2nd. I was told work comp would not authorize the refill (even though the box says it has a refill on it). I was told it would have to go into review. I waited until 3 weeks later when I got the rejection letter from work comp, saying the patches were denied.
I asked my PCP to file an appeal, so he wrote a letter explaining that when I use the patches, I don't have to take as many oral meds. That was 2 weeks ago.
Yesterday, the pharmacist told me that he could refill the RX, so we went and participated in the extreme sport of grocery shopping and then returned. I walked in this time, needing to use the rest room. Braced up in my CTO, I expected I was picking up the patches that would help me so much.
What I was expecting and what I got were two different things, of course. The gal said the patches were still being denied. I wanted to cry. I was so weak standing there in the vest. I felt so vulnerable, so tender, holding up the line behind me (couldn't look behind me, but when I finally looked after feeling so guilty for ten minutes, I saw no one there). I felt such a "nothing" as I waited for some pencil pusher in an office in CA to decide if I should suffer or not. Obviously, he has never experienced this sort of pain.
Tears started to form because the rejection pushed so many buttons previously installed by neurosurgeons, neurologists, doctors of all kinds who disrespected me and told me I had emotional problems (until Dr. B so easily found that my neck was still broken). I walked out of the drug store feeling stepped upon, a ratty old door mat no one notices anymore, that ought to be replaced because it is worn out, used up and ugly.
In spite of all of this, however, I did have a nice day yesterday, with less pain than usual. Perhaps the pain this morning is also because I took less pain meds yesterday...so, as they leeched out of my body, the true tenants, the ones who sub-let to pain meds on a temporary and ephemeral basis, began to rock it on out in a no-holds-barred parte'. One I didn't like being invited to.
pardon all the metaphors and analogies this morning!! Sometimes, for a writer, they bottle up and then blow the cork...uh oh...here I go again!
Sunday, November 23, 2008
Now an ear
I'm sitting here in my CTO brace (feels good) because I have another new symptom now. I had this last night pretty badly, too.
As I said before, something started when a few weeks ago, I turned my head right and looked slightly up. I started getting different and more acute pain in the occipital area. Well, now it's affecting my right ear ... my right eye.... even the sole of my right foot.
That's right, early this morning, I had it for the second time (it's premier appearance was yesterday). And not only was it burning pain in my right ear, the pain went into my eyes again, and I noticed my right arm and hand were also hurting, as well as my right foot.
Tonight, while eating supper, the chewing action set off the pain in my ear. And it didn't go away. So, as I usually do, I put my CTO on for awhile, and it "helps." Quotation marks around "helps" because I can still feel the stabs from time to time in that ear while sitting here, writing. Swallowing makes it hurt worse. Chewing, too. Talking, too. Something has gotten "loosey goosey" in my skull base area that wasn't before.
Last night before bed, I felt like every muscle in my body was tight, "wound up like an 8 day clock," my Dad would say. I took a small tablet of Flexeril, and that caused me to sleep in the same bed all the way through the time I woke up at 5:45.
After getting up and having 2 cups of coffee and watching TV, I fell asleep in the recliner and woke up 90 minutes later! I started to move around, cleaning up dishes in the sink, making the bed, answering a couple of emails, and my hands started tremoring and I felt like all the stuffing was knocked out of me. I laid down on the guest bed with the dogs, and slept another 90 minutes.
It's all due to the Flexeril. On the one hand, I feel it is good to catch up with sleep, since I operate on only about 4 hours of sleep every night. My brain has felt quite clear today, on the times I've been awake, ha!
But I do not think I'll take Flexeril again, unless I'm post surgery and really need it. I hear the neck spasms mercilessly after the fusion surgery, when muscles and skin and such are pulled up into a position they've not been in for oh, so many years.
I'll take Ativan instead. That never puts me out...and should help to relax muscles.
What a lovely day outside today. I'd have liked to have been out in it, the sun was trying to warm up the air but it being almost Thanksgiving, there was still a lot of coolness to the air. I barely stepped out to take a warm, big, chocolate chip cookie to my husband who was waxing our new car in the shop.
Yes, a new car! I can't recall if I mentioned this here or not, but I'll write it out anyway. When my son and daughter in law were here last July, we drove around a lot, and my DIL said to me, "You need to have a bigger, more luxurious car! And an automatic. All that shifting done by your husband is rocking the vehicle, the truck is too rough riding."
That got me to thinking for six months, and I really noticed how rough our little truck is. And going around corners, I'm all the time tense and holding onto handles to keep myself upright while in the CTO. So, I broached the subject with my husband, and we found, our first day out looking, a nice 2000 Buick Regal LS. It is a regal car indeed! We are not ones to have had a luxury car in the past. But to have all the bells and whistles, and a Monsoon Concert sound system, too!! And the leather seats wrap around me to where they hold me in place around corners, factoring in the suspension made for cornering.
We only paid $2500, a true gift from God when the Kelly Blue Book says the car is worth $5200.
And from a very nice, farming family. I plan to ride in the old truck as little as possible!
As I said before, something started when a few weeks ago, I turned my head right and looked slightly up. I started getting different and more acute pain in the occipital area. Well, now it's affecting my right ear ... my right eye.... even the sole of my right foot.
That's right, early this morning, I had it for the second time (it's premier appearance was yesterday). And not only was it burning pain in my right ear, the pain went into my eyes again, and I noticed my right arm and hand were also hurting, as well as my right foot.
Tonight, while eating supper, the chewing action set off the pain in my ear. And it didn't go away. So, as I usually do, I put my CTO on for awhile, and it "helps." Quotation marks around "helps" because I can still feel the stabs from time to time in that ear while sitting here, writing. Swallowing makes it hurt worse. Chewing, too. Talking, too. Something has gotten "loosey goosey" in my skull base area that wasn't before.
Last night before bed, I felt like every muscle in my body was tight, "wound up like an 8 day clock," my Dad would say. I took a small tablet of Flexeril, and that caused me to sleep in the same bed all the way through the time I woke up at 5:45.
After getting up and having 2 cups of coffee and watching TV, I fell asleep in the recliner and woke up 90 minutes later! I started to move around, cleaning up dishes in the sink, making the bed, answering a couple of emails, and my hands started tremoring and I felt like all the stuffing was knocked out of me. I laid down on the guest bed with the dogs, and slept another 90 minutes.
It's all due to the Flexeril. On the one hand, I feel it is good to catch up with sleep, since I operate on only about 4 hours of sleep every night. My brain has felt quite clear today, on the times I've been awake, ha!
But I do not think I'll take Flexeril again, unless I'm post surgery and really need it. I hear the neck spasms mercilessly after the fusion surgery, when muscles and skin and such are pulled up into a position they've not been in for oh, so many years.
I'll take Ativan instead. That never puts me out...and should help to relax muscles.
What a lovely day outside today. I'd have liked to have been out in it, the sun was trying to warm up the air but it being almost Thanksgiving, there was still a lot of coolness to the air. I barely stepped out to take a warm, big, chocolate chip cookie to my husband who was waxing our new car in the shop.
Yes, a new car! I can't recall if I mentioned this here or not, but I'll write it out anyway. When my son and daughter in law were here last July, we drove around a lot, and my DIL said to me, "You need to have a bigger, more luxurious car! And an automatic. All that shifting done by your husband is rocking the vehicle, the truck is too rough riding."
That got me to thinking for six months, and I really noticed how rough our little truck is. And going around corners, I'm all the time tense and holding onto handles to keep myself upright while in the CTO. So, I broached the subject with my husband, and we found, our first day out looking, a nice 2000 Buick Regal LS. It is a regal car indeed! We are not ones to have had a luxury car in the past. But to have all the bells and whistles, and a Monsoon Concert sound system, too!! And the leather seats wrap around me to where they hold me in place around corners, factoring in the suspension made for cornering.
We only paid $2500, a true gift from God when the Kelly Blue Book says the car is worth $5200.
And from a very nice, farming family. I plan to ride in the old truck as little as possible!
Friday, November 21, 2008
Hands and eyes
To again record symptoms I perhaps have not listed here yet, I have had these two for a while now, but the hands are getting much, much worse.
With my eyes, when I wake up in the night and then awake for awhile, I'll sit at the computer and play Spyder Solitaire or read blogs...and I find that my pupils do not close for the longest time. They must be wide open, and it hurts terribly for 30 minutes or so until they finally adjust to the light. Reminds me of when I've had my pupils dilated at an opthamologist's and how painful my eyes were even with sunglasses on as I was driven home. In fact, I have tried sunglasses on in the middle of the night and dimming my computer screen to almost black, and still, my eyes are burning and almost impossible to see through.
I looked this up, finally, yesterday. This is called "sluggish pupils." And either occurs in those over 70 years old, or those with MS, or someone with pressure on the optic nerve. My symptoms, in some areas, greatly resemble those of MS, a nerve demylineating disease. In fact, I was told once by a medical professional (this was about a year post injury) that she thought I had MS. Because her mother had MS, she even called herself an expert.
I researched MS online and even joined for many months an MS support group. Until, God led a woman to post on that group about Chiari Malformation, which led me to learn about The Chiari Institute and meet many strong and beautiful, long-lasting friends. I do not have congenital Chiari, but I have an acquired chiari due to the trauma.
My hands...this is the worsening symptom. They are becoming very weak in their grip to where it is painful and difficult to open a doorknob or use a spoon to stir a cake mix together. Every morning (or in the middle of the night....I never wake up in the morning having slept all night), I wake up with my hands burning, feeling like they are asleep. I wonder if I have my hands clenched in fists while I sleep. The palms start to itch and the pain stays in them (the entire hand and all fingers, both hands) for a very long time, sometimes all day.
We all know that hand pain is often linked to upper Cspine. That is where all those nerves originate.
Again, it all tells me I must risk this surgery.
You might wonder (as I would, if I were not me) why I keep stating over and over, "It's time."
"I must do this." "This tells me I must have this surgery." ad naseum, I'm sure, to the umpteenth degree.
It's because having the surgery is on my mind 24 hours a day. Well, perhaps not during the 3 or 4 hours of sleep I get each night. As I lie in bed awaiting sleep, I think of it. I reason it out. I think of so many others who have done worse since the fusion. Of their hardware coming loose. Of having to redo it all in a few years. Because online support groups are only visited by those who are suffering, that is pretty much all I hear. The ones who went on to lead incredible lives are not on the internet, really not even in a mentor-type position. They are off having fun.
I have the names of two people only who have done well with the fusion. One just wrote to me that her fusion, done two years ago, is failing.
What do I do if I choose not to follow through? What if mine fails? A halo for the rest of my life? My doctor says no, just the Johnson CTO. Heaven forbid.
What do I do if I do nothing, and things just worsen and worsen? I really don't think, even though I have the histories of so many patients who are suffering post fusion, that I have the option not to do it.
It's like Butch and Sundance at the end of the movie. In front of them is a steep cliff, with a shallow river at the bottom, a hundred feet below. Behind them are the Bolivian police with shotguns aimed and hammers back.
They jumped.
Some historians believe they survived.
The other thing that I deal with is my husband. A wonderful man, as I've written. But his life has become just staying home and being here for me. He has many fruitful years ahead of him. So, when it's possible, I force myself to drive in the car with him to get the mail in town. I bake him cakes. I sit in the recliner and watch shows not so interesting to me (Homicide and Cops etc) because I love him so, and I feel badly that his retirement years are not traveling and sightseeing as he had hoped. He never mentions this to me, and he never will. He might not even think it. But it haunts me.
Well, time to take the cake out of the oven and get dressed and go along for the ride to the Post Office.
With my eyes, when I wake up in the night and then awake for awhile, I'll sit at the computer and play Spyder Solitaire or read blogs...and I find that my pupils do not close for the longest time. They must be wide open, and it hurts terribly for 30 minutes or so until they finally adjust to the light. Reminds me of when I've had my pupils dilated at an opthamologist's and how painful my eyes were even with sunglasses on as I was driven home. In fact, I have tried sunglasses on in the middle of the night and dimming my computer screen to almost black, and still, my eyes are burning and almost impossible to see through.
I looked this up, finally, yesterday. This is called "sluggish pupils." And either occurs in those over 70 years old, or those with MS, or someone with pressure on the optic nerve. My symptoms, in some areas, greatly resemble those of MS, a nerve demylineating disease. In fact, I was told once by a medical professional (this was about a year post injury) that she thought I had MS. Because her mother had MS, she even called herself an expert.
I researched MS online and even joined for many months an MS support group. Until, God led a woman to post on that group about Chiari Malformation, which led me to learn about The Chiari Institute and meet many strong and beautiful, long-lasting friends. I do not have congenital Chiari, but I have an acquired chiari due to the trauma.
My hands...this is the worsening symptom. They are becoming very weak in their grip to where it is painful and difficult to open a doorknob or use a spoon to stir a cake mix together. Every morning (or in the middle of the night....I never wake up in the morning having slept all night), I wake up with my hands burning, feeling like they are asleep. I wonder if I have my hands clenched in fists while I sleep. The palms start to itch and the pain stays in them (the entire hand and all fingers, both hands) for a very long time, sometimes all day.
We all know that hand pain is often linked to upper Cspine. That is where all those nerves originate.
Again, it all tells me I must risk this surgery.
You might wonder (as I would, if I were not me) why I keep stating over and over, "It's time."
"I must do this." "This tells me I must have this surgery." ad naseum, I'm sure, to the umpteenth degree.
It's because having the surgery is on my mind 24 hours a day. Well, perhaps not during the 3 or 4 hours of sleep I get each night. As I lie in bed awaiting sleep, I think of it. I reason it out. I think of so many others who have done worse since the fusion. Of their hardware coming loose. Of having to redo it all in a few years. Because online support groups are only visited by those who are suffering, that is pretty much all I hear. The ones who went on to lead incredible lives are not on the internet, really not even in a mentor-type position. They are off having fun.
I have the names of two people only who have done well with the fusion. One just wrote to me that her fusion, done two years ago, is failing.
What do I do if I choose not to follow through? What if mine fails? A halo for the rest of my life? My doctor says no, just the Johnson CTO. Heaven forbid.
What do I do if I do nothing, and things just worsen and worsen? I really don't think, even though I have the histories of so many patients who are suffering post fusion, that I have the option not to do it.
It's like Butch and Sundance at the end of the movie. In front of them is a steep cliff, with a shallow river at the bottom, a hundred feet below. Behind them are the Bolivian police with shotguns aimed and hammers back.
They jumped.
Some historians believe they survived.
The other thing that I deal with is my husband. A wonderful man, as I've written. But his life has become just staying home and being here for me. He has many fruitful years ahead of him. So, when it's possible, I force myself to drive in the car with him to get the mail in town. I bake him cakes. I sit in the recliner and watch shows not so interesting to me (Homicide and Cops etc) because I love him so, and I feel badly that his retirement years are not traveling and sightseeing as he had hoped. He never mentions this to me, and he never will. He might not even think it. But it haunts me.
Well, time to take the cake out of the oven and get dressed and go along for the ride to the Post Office.
Thursday, November 20, 2008
The time is now
part of me hates to post when I am in the throes of suffering.
Yet, this blog is not just an idle journal or a way to keep records for me. It is my way to chronicle what I am going through medically, and as I look ahead, I see quite a journey that will need recording. If I wait until I feel better, I will not remember what this feels like. Please read no further if you want to read only the pleasant accounts of my trail.
I've been working up to this day. A quick glance through past posts can easily tell that I have been slipping downhill through the mud and underbrush of this dangerous nerve compression.
It's not all a pretty sight.
Today is the worst I have had in a very long time.
When I get up in the morning, I have my usual lumbar area pain and hurting feet and legs. I get my coffee and sit down in the recliner to watch the news with my husband. And when the weight of my head starts crushing on what it is crushing on, what I go through is hard to bear and harder to describe.
The all-over "neuro" feeling, the buzzing at the ends of my fingers of both hands, my 24-hour jaw tremors amp up so I can't keep my mouth closed.
I've described this to women before as feeling like the worst day of a really bad period, that very deep and profound achiness, combined with all the other stuff. Scalp hurts, hurts to move my hair, occipital pain, eyes hurt.
The profound itchiness (I know, you've heard it all before! So have I, for so many years now!) which kept me from going to sleep last night. My eyeballs itch, the insides of my eyelids itch.
Organs inside my belly seem to itch.
Finally, I put on my CTO vest, something I don't need to wear (per Dr. B) when I'm "hanging out" around the house. This helps immediately to some extent, and ANY extent is better than NO extent! I can breathe a little better, swallow better.
I laid down with the CTO on, not an easy or comfortable thing to do, but as I keel slowly over toward the pillow, I easily sense how much better it feels with my neck stabilized by the CTO than without it on. Something is holding my head up. Thank you!
Nauseous, oh goodness, I have felt so sick to my stomach today. Common for folks with this sort of nerve compression. I sucked on a ginger drop, but that didn't work this time. Later in the day, I ate three saltines and sipped a tiny bit of O'Doul's and that really did help.
I fell asleep, rigid in the CTO, with my two mutts on the bed with me. It's been one of those days. Very very weak. Dr. B calls them "pajama days" but this is the worst one I've had in years.
So, I finally wrote to my neurosurgeon and told him that I'll be getting my DEXA scan next week, and Dr. Fu will be making his evaluation about me and a fusion surgery. I'm ready.
Yet, this blog is not just an idle journal or a way to keep records for me. It is my way to chronicle what I am going through medically, and as I look ahead, I see quite a journey that will need recording. If I wait until I feel better, I will not remember what this feels like. Please read no further if you want to read only the pleasant accounts of my trail.
I've been working up to this day. A quick glance through past posts can easily tell that I have been slipping downhill through the mud and underbrush of this dangerous nerve compression.
It's not all a pretty sight.
Today is the worst I have had in a very long time.
When I get up in the morning, I have my usual lumbar area pain and hurting feet and legs. I get my coffee and sit down in the recliner to watch the news with my husband. And when the weight of my head starts crushing on what it is crushing on, what I go through is hard to bear and harder to describe.
The all-over "neuro" feeling, the buzzing at the ends of my fingers of both hands, my 24-hour jaw tremors amp up so I can't keep my mouth closed.
I've described this to women before as feeling like the worst day of a really bad period, that very deep and profound achiness, combined with all the other stuff. Scalp hurts, hurts to move my hair, occipital pain, eyes hurt.
The profound itchiness (I know, you've heard it all before! So have I, for so many years now!) which kept me from going to sleep last night. My eyeballs itch, the insides of my eyelids itch.
Organs inside my belly seem to itch.
Finally, I put on my CTO vest, something I don't need to wear (per Dr. B) when I'm "hanging out" around the house. This helps immediately to some extent, and ANY extent is better than NO extent! I can breathe a little better, swallow better.
I laid down with the CTO on, not an easy or comfortable thing to do, but as I keel slowly over toward the pillow, I easily sense how much better it feels with my neck stabilized by the CTO than without it on. Something is holding my head up. Thank you!
Nauseous, oh goodness, I have felt so sick to my stomach today. Common for folks with this sort of nerve compression. I sucked on a ginger drop, but that didn't work this time. Later in the day, I ate three saltines and sipped a tiny bit of O'Doul's and that really did help.
I fell asleep, rigid in the CTO, with my two mutts on the bed with me. It's been one of those days. Very very weak. Dr. B calls them "pajama days" but this is the worst one I've had in years.
So, I finally wrote to my neurosurgeon and told him that I'll be getting my DEXA scan next week, and Dr. Fu will be making his evaluation about me and a fusion surgery. I'm ready.
Wednesday, November 19, 2008
Thankfulness!
I write here mostly about medical issues...doctor appointments and decline and such.
But I must make it known that I do lead a happy life, though that may not be apparent from my posts! I try here to write the reflections of someone chronically ill, with chronic central pain, so that others may read this and relate. Other readers will understand and have insight through a window they perhaps might have never seen.
But it can all end up sounding like a bit of whining and complaining, I fear.
I do have smiles and giggles and happiness in my life. I have so much for which to be thankful. I am reminded every day that I should not be alive, and such a close brush does cause a constant state of gratitude...a constant feeling of walking in grace....
Though I must humbly state that I was always one to be filled with awe and gratitude. A mountain view seen each time I drove into town never became banal to me. I have always gasped and gushed many times at the view we see when we drive to our shopping town. For twenty five miles of our journey, we pass through a National Scenic Area.
How thankful I am for my husband. Together for 35 years so far, we are best buddies and finish each other's sentences. We say something and the other says, "I was just about to say those very words!"
He is funny and witty and keeps me laughing and trying to come up with ways to cause him to smile, as well. We are compadres, partners in crime, peas in the pod, BFFs, and we know we will always be there for each other, through thick and thin, because we've already stuck through all the various "viscosities!"
I'm so appreciative of my home, which is good because I spend an awful lot of time in it. I love each wall and door, floor and ceilings and the spot it sits in; the view out each window; even the sound of cars passing by on the country road below us.
I love our town. I don't know hardly anyone in it, but I always comment on the beauty of our broad valley, the views of Mt Adams looming nearby and the far-off, snow-capped tops of Mt. St. Helens and Mt. Rainer to the west and north, and then Mt. Hood reigns over the vista to the south. The valley is flat and wide and sights of grazing cattle, wind towers on the Columbia Hills, tractors in the fields tending their winter wheat, dusty, muddy pickups in the parking lot of the grocery store with stock dogs in back, perched on top of fuel tanks that service those tractors, all pull at my heartstrings and make me feel warmly at home.
Victorian homes grace the streets. Well, some streets. There are also many small, poor homes on our streets, too, for unemployment in our little town is sky high since the aluminum plant shut down. Old cars, unrestored ones you'd never see on the streets of California with its strict emissions laws, park in front of the $1 store (The General Store); the thrift store; the senior center; the hardware store; the Chinese/American restaurant; or one of two lackluster bars on Main Street.
How I love our court house. Here, in a poor, farming county, we have a fascinating piece of art deco architecture that simply amazes me. I'll take a photo some time and share it here.
Our road as it leads from town delights my soul. The Ponderosa Pines and the oaks, always in a state of flux, frame the paved road and, right now, wood smoke rises from many of the homes' chimneys, and the sight and smell of this makes me take a deep, grateful sigh. I am at home.
I have so much for which to be thankful, each moment of the day. And I am, pretty much, in that state of gratitude. Thank You, Lord!
And I just want my friends to know that.
But I must make it known that I do lead a happy life, though that may not be apparent from my posts! I try here to write the reflections of someone chronically ill, with chronic central pain, so that others may read this and relate. Other readers will understand and have insight through a window they perhaps might have never seen.
But it can all end up sounding like a bit of whining and complaining, I fear.
I do have smiles and giggles and happiness in my life. I have so much for which to be thankful. I am reminded every day that I should not be alive, and such a close brush does cause a constant state of gratitude...a constant feeling of walking in grace....
Though I must humbly state that I was always one to be filled with awe and gratitude. A mountain view seen each time I drove into town never became banal to me. I have always gasped and gushed many times at the view we see when we drive to our shopping town. For twenty five miles of our journey, we pass through a National Scenic Area.
How thankful I am for my husband. Together for 35 years so far, we are best buddies and finish each other's sentences. We say something and the other says, "I was just about to say those very words!"
He is funny and witty and keeps me laughing and trying to come up with ways to cause him to smile, as well. We are compadres, partners in crime, peas in the pod, BFFs, and we know we will always be there for each other, through thick and thin, because we've already stuck through all the various "viscosities!"
I'm so appreciative of my home, which is good because I spend an awful lot of time in it. I love each wall and door, floor and ceilings and the spot it sits in; the view out each window; even the sound of cars passing by on the country road below us.
I love our town. I don't know hardly anyone in it, but I always comment on the beauty of our broad valley, the views of Mt Adams looming nearby and the far-off, snow-capped tops of Mt. St. Helens and Mt. Rainer to the west and north, and then Mt. Hood reigns over the vista to the south. The valley is flat and wide and sights of grazing cattle, wind towers on the Columbia Hills, tractors in the fields tending their winter wheat, dusty, muddy pickups in the parking lot of the grocery store with stock dogs in back, perched on top of fuel tanks that service those tractors, all pull at my heartstrings and make me feel warmly at home.
Victorian homes grace the streets. Well, some streets. There are also many small, poor homes on our streets, too, for unemployment in our little town is sky high since the aluminum plant shut down. Old cars, unrestored ones you'd never see on the streets of California with its strict emissions laws, park in front of the $1 store (The General Store); the thrift store; the senior center; the hardware store; the Chinese/American restaurant; or one of two lackluster bars on Main Street.
How I love our court house. Here, in a poor, farming county, we have a fascinating piece of art deco architecture that simply amazes me. I'll take a photo some time and share it here.
Our road as it leads from town delights my soul. The Ponderosa Pines and the oaks, always in a state of flux, frame the paved road and, right now, wood smoke rises from many of the homes' chimneys, and the sight and smell of this makes me take a deep, grateful sigh. I am at home.
I have so much for which to be thankful, each moment of the day. And I am, pretty much, in that state of gratitude. Thank You, Lord!
And I just want my friends to know that.
Monday, November 17, 2008
Yesterday, I was telling my husband a funny story of how I had mixed up, while talking on the phone to my mother about vacuums, the word "Eureka" and "urethra." It was hysterical and I laughed so hard, that right away, the top of my scalp went taut, my scalp burned and tingled all over, and also down the back of my neck. My arms started to ache, my hands and fingers. Extreme and diffuse weakness. And when I ran my hand through my hair, the follicles were particularly painful. And I also started to sweat and feel very flushed.
I can't allow myself that kind of abandon. I will always pay for it neurologically. I turned on my little fan, and then gave up trying to feel better and laid down and fell right to sleep for 90 minutes.
Last night, while sitting in the recliner, I awoke to become aware that I had drifted off to sleep. The time was 11:45 and my head had lolled off to the left and down, with my chin on my chest.
Not a good position for me to have held for an hour. Knowing what I have come to learn about our anatomy and the position of my odontoid (C2) bone next to my brainstem, a position like that is...well... to be avoided.
Today, I noticed a lot of extra symptoms and added pain. In the morning, even after two doses of oxycodone, the right back side of my head stabbed with pain, the pain ran up over my head into my eyes, particularly the right one. I had pain in my right arm, my right hand, my right leg and stabbing pains in my right foot.
I also have had trouble with typing, letters all mixed up and I have to try over and over.
Lots of extra weakness today. And tonight, severe, burning itching all over, most of all on the outside of my right elbow. Deep, penetrating, lancinating stabs of pain that take over my whole body and brain, stop me in my tracks, take my breath away. I've been sitting with ice gel paks on my arm a lot tonight, scratching my back and shoulders and arms with the spaghetti tool.
I had asked the pharmacist if I could take Benadryl when these parasthetic itchings come on, and he said he did not recommend it, combined with the oxycodone I'm taking. He was afraid it would suppress my respiration. That blue tablet, Benadryl Severe Allergy and Sinus Headache, used to do a good job on the itching.
One thing I've not written about but has been common for me for the last 4.5 years is that if I stop to notice (and I do several times a day), my body is very tense all the time. I might find my right hand clenched in a tight fist, or my "glutius maximus" muscles extremely tense, even though I'm relaxing in the recliner or in the car. I have no idea what this means, whether it is evidence of the Post Traumatic Stress Disorder, or something else.
Early tomorrow morning, I have an appointment with my hematologist/oncologist. First, at 8 am, they will pull blood for tests; next I will meet with Dr. Fu; and finally, I will have the 3.5 hour IV drip of pamidronate, the bone strengthening regimen I've been on for 18 months.
I intend to tell Dr. Fu that I am very anxious to move ahead with the fusion, and that I want him to schedule me for the new Bone Density Scan (DEXA). From this, he will tell me if he thinks it's finally time to schedule the fusion surgery, and I will pass this all on to Dr. B, and hopefully will move ahead.
I say I'm " anxious" to have the surgery. I'm very nervous about it. But I have studied and researched and interviewed patients with this surgery, I am getting much worse and quickly, if I'm going to do it, I need to bite the bullet, cowboy up, set my jaw and get 'er done.
Bet Larry the Cable Guy never expected his slogan to be used in an instance like this.
I can't allow myself that kind of abandon. I will always pay for it neurologically. I turned on my little fan, and then gave up trying to feel better and laid down and fell right to sleep for 90 minutes.
Last night, while sitting in the recliner, I awoke to become aware that I had drifted off to sleep. The time was 11:45 and my head had lolled off to the left and down, with my chin on my chest.
Not a good position for me to have held for an hour. Knowing what I have come to learn about our anatomy and the position of my odontoid (C2) bone next to my brainstem, a position like that is...well... to be avoided.
Today, I noticed a lot of extra symptoms and added pain. In the morning, even after two doses of oxycodone, the right back side of my head stabbed with pain, the pain ran up over my head into my eyes, particularly the right one. I had pain in my right arm, my right hand, my right leg and stabbing pains in my right foot.
I also have had trouble with typing, letters all mixed up and I have to try over and over.
Lots of extra weakness today. And tonight, severe, burning itching all over, most of all on the outside of my right elbow. Deep, penetrating, lancinating stabs of pain that take over my whole body and brain, stop me in my tracks, take my breath away. I've been sitting with ice gel paks on my arm a lot tonight, scratching my back and shoulders and arms with the spaghetti tool.
I had asked the pharmacist if I could take Benadryl when these parasthetic itchings come on, and he said he did not recommend it, combined with the oxycodone I'm taking. He was afraid it would suppress my respiration. That blue tablet, Benadryl Severe Allergy and Sinus Headache, used to do a good job on the itching.
One thing I've not written about but has been common for me for the last 4.5 years is that if I stop to notice (and I do several times a day), my body is very tense all the time. I might find my right hand clenched in a tight fist, or my "glutius maximus" muscles extremely tense, even though I'm relaxing in the recliner or in the car. I have no idea what this means, whether it is evidence of the Post Traumatic Stress Disorder, or something else.
Early tomorrow morning, I have an appointment with my hematologist/oncologist. First, at 8 am, they will pull blood for tests; next I will meet with Dr. Fu; and finally, I will have the 3.5 hour IV drip of pamidronate, the bone strengthening regimen I've been on for 18 months.
I intend to tell Dr. Fu that I am very anxious to move ahead with the fusion, and that I want him to schedule me for the new Bone Density Scan (DEXA). From this, he will tell me if he thinks it's finally time to schedule the fusion surgery, and I will pass this all on to Dr. B, and hopefully will move ahead.
I say I'm " anxious" to have the surgery. I'm very nervous about it. But I have studied and researched and interviewed patients with this surgery, I am getting much worse and quickly, if I'm going to do it, I need to bite the bullet, cowboy up, set my jaw and get 'er done.
Bet Larry the Cable Guy never expected his slogan to be used in an instance like this.
Thursday, November 13, 2008
Twisting
I was up until 1 am last night, battling fire ants.
Wondering if I should take a big dose of oxycodone, if that would help me at least sleep through their attack. Pain medications do not work on central pain, that peculiar torture that emanates from the spinal cord. But sometimes, I still try. But last night, I didn't.
A stab of burning itch hit me on the outside of my left knee; on my collarbone; on the top of my right hand; the top of my left foot; here, there, never twice in the same location; burning itch that seems to have immediate access into the deepest caverns of my brain, which must be popping and misfiring like an old Chevy truck runnin' on 3 cylinders. The hot poker stabs only lasted a couple of seconds. Although I knew it doesn't help, I reflexively kept reaching to scratch the outside of a knee, the sole of my foot. Over and over. Even on the inside of my eyelids.
This morning, I am weak beyond words and the tortuous process seems to have settled into my right eye.
The other day, while in town, I looked up just a tad to look at a display of windchimes on sale at the hardware store, that were hanging at about 7 ft. high. My neck at the C1 area was shot through with stabbing pain. This is rare for me. Usually, the skull base area throbs all the time, but I don't often have harsh stabs of pain upon movement, for the most part.
[When I was hanging in the Invasive Cervical Traction a year ago in NY, the doctor reached up and grabbed hold of the chain or cable or whatever I was hanging from, the pins of the halo pinching my skull. He turned my head by twisting the chain so that they could get the view in the CT they wanted. He turned it to the left and I felt, wow, such an electrifying pain, I told him to stop. And I know I had pain like this right after I broke my neck.]
I took an Ativan the other day, all I had with me that I thought might calm my muscles or something. We went to a movie, but if I moved, I still felt that stab at the skull base again.
This morning, I feel this again, though not as intense. Along with a watery right eye and that neurological pain within it. This is trigeminal nerve stuff. Pain that starts at the back of the head, goes up over the ears and into the eyes is following the trigeminal nerve.
I have been staying home and inside all week. Yesterday, I did not step out once. I did do some hand-sewing beside an open window as a rainy, stormy breeze swept across our yard and set leaves dancing. The fresh air was wonderful.
And I felt a poignant twist in the gut about where my life is now. I didn't cry about it, it was more like fact. I used to conquer the mountains, the rough trails or no trails, the secret, hidden places where others cared not to ride. I breathed more fresh air than inside air. I was blessed and knew it.
Now, I look out the window at the mountains, the storm clouds gathering...I open it to taste the elixir of air wet with decaying leaves, the neighbor's woodstove, glistening rocks.
Many years ago, after my elderly father had suffered several strokes, I remember him sending me photos he'd taken of each room in his single wide trailer house. With his walker to steady him, he creaked from room to room, stopping, finding his balance while he straightened up, righted the camera, checked the settings, and snapped the shot. My heart at that time twisted for the man who used to send me pictures he'd snapped, a few years earlier, through his windshield of Wyoming highway, prairie, antelope....rushing waterfalls....to see him limited to taking pictures withing the confining walls of a small, wood-paneled home, it hurt the heart.
Now, 20 years younger than he was then, I am almost as limited. Maybe more so, because Dad was able to drive up until the day he died at 80 years of age. My arms and hands are becoming tremendously weak. I am worse than I was two months ago. I would leave today for the fusion if I could.
I read a report from a neuropsychologist who interviewed me in September. He said that I am reclusive. If I could change that, I would, through determination and guts, just like I and my horse struggled up rocky cliffs or through thick brush, up over mountain passes or across deep rivers. But sometimes, I am learning, guts, will, determination, all will not get you far.
I am ever-learning. I always thought they made up for everything.
Wondering if I should take a big dose of oxycodone, if that would help me at least sleep through their attack. Pain medications do not work on central pain, that peculiar torture that emanates from the spinal cord. But sometimes, I still try. But last night, I didn't.
A stab of burning itch hit me on the outside of my left knee; on my collarbone; on the top of my right hand; the top of my left foot; here, there, never twice in the same location; burning itch that seems to have immediate access into the deepest caverns of my brain, which must be popping and misfiring like an old Chevy truck runnin' on 3 cylinders. The hot poker stabs only lasted a couple of seconds. Although I knew it doesn't help, I reflexively kept reaching to scratch the outside of a knee, the sole of my foot. Over and over. Even on the inside of my eyelids.
This morning, I am weak beyond words and the tortuous process seems to have settled into my right eye.
The other day, while in town, I looked up just a tad to look at a display of windchimes on sale at the hardware store, that were hanging at about 7 ft. high. My neck at the C1 area was shot through with stabbing pain. This is rare for me. Usually, the skull base area throbs all the time, but I don't often have harsh stabs of pain upon movement, for the most part.
[When I was hanging in the Invasive Cervical Traction a year ago in NY, the doctor reached up and grabbed hold of the chain or cable or whatever I was hanging from, the pins of the halo pinching my skull. He turned my head by twisting the chain so that they could get the view in the CT they wanted. He turned it to the left and I felt, wow, such an electrifying pain, I told him to stop. And I know I had pain like this right after I broke my neck.]
I took an Ativan the other day, all I had with me that I thought might calm my muscles or something. We went to a movie, but if I moved, I still felt that stab at the skull base again.
This morning, I feel this again, though not as intense. Along with a watery right eye and that neurological pain within it. This is trigeminal nerve stuff. Pain that starts at the back of the head, goes up over the ears and into the eyes is following the trigeminal nerve.
I have been staying home and inside all week. Yesterday, I did not step out once. I did do some hand-sewing beside an open window as a rainy, stormy breeze swept across our yard and set leaves dancing. The fresh air was wonderful.
And I felt a poignant twist in the gut about where my life is now. I didn't cry about it, it was more like fact. I used to conquer the mountains, the rough trails or no trails, the secret, hidden places where others cared not to ride. I breathed more fresh air than inside air. I was blessed and knew it.
Now, I look out the window at the mountains, the storm clouds gathering...I open it to taste the elixir of air wet with decaying leaves, the neighbor's woodstove, glistening rocks.
Many years ago, after my elderly father had suffered several strokes, I remember him sending me photos he'd taken of each room in his single wide trailer house. With his walker to steady him, he creaked from room to room, stopping, finding his balance while he straightened up, righted the camera, checked the settings, and snapped the shot. My heart at that time twisted for the man who used to send me pictures he'd snapped, a few years earlier, through his windshield of Wyoming highway, prairie, antelope....rushing waterfalls....to see him limited to taking pictures withing the confining walls of a small, wood-paneled home, it hurt the heart.
Now, 20 years younger than he was then, I am almost as limited. Maybe more so, because Dad was able to drive up until the day he died at 80 years of age. My arms and hands are becoming tremendously weak. I am worse than I was two months ago. I would leave today for the fusion if I could.
I read a report from a neuropsychologist who interviewed me in September. He said that I am reclusive. If I could change that, I would, through determination and guts, just like I and my horse struggled up rocky cliffs or through thick brush, up over mountain passes or across deep rivers. But sometimes, I am learning, guts, will, determination, all will not get you far.
I am ever-learning. I always thought they made up for everything.
Sunday, November 9, 2008
Indicators
Someone told me once that if something is wrong inside the body, it will come out to the surface one way or another. It wasn't a doctor, it was more like a health-food-guru of some kind.
Something I've never chronicled for myself, probably among many things, is an indicator that something hugely stressful is going on with me. Since my injury, I've had two small areas where blood will rise to the surface and look like a glaring, red birthmark or something, if I have been under some stress.
It will show up exactly in the same spot under my right eye, or at the bottom, right side, of my lower lip. It doesn't hurt. It's just blood rising up to the skin level but not all the way, there is no bleeding. I would describe in crude terms as the same as a "hickey" that teenagers give to each other on the neck. But these are not that large.
They stay a day or two and then they go. I have one now right at the edge of my bottom lip, right side. My husband told me I had some food there to brush away, but I told him, no, it's just a stress indicator. One of many, I'm sure. Like when my arms itch so badly (as they are right now). And hot pokers stab at my feet. Or nausea floods over me like an angry, ocean wave.
Something I've never chronicled for myself, probably among many things, is an indicator that something hugely stressful is going on with me. Since my injury, I've had two small areas where blood will rise to the surface and look like a glaring, red birthmark or something, if I have been under some stress.
It will show up exactly in the same spot under my right eye, or at the bottom, right side, of my lower lip. It doesn't hurt. It's just blood rising up to the skin level but not all the way, there is no bleeding. I would describe in crude terms as the same as a "hickey" that teenagers give to each other on the neck. But these are not that large.
They stay a day or two and then they go. I have one now right at the edge of my bottom lip, right side. My husband told me I had some food there to brush away, but I told him, no, it's just a stress indicator. One of many, I'm sure. Like when my arms itch so badly (as they are right now). And hot pokers stab at my feet. Or nausea floods over me like an angry, ocean wave.
Everything but the smell of sulphur
It's been a rough few days. Today was really bad.
I woke up at 3 am in pain, took a pain pill and went back to bed, woke up at 8:20 am, then fell asleep in the recliner again for another 90 minutes. I woke up and made myself get up and moving. And I went outside and did a few light, slow things...raked, slowly, some leaves for my husband to put into the compost bin (very few leaves)...I walked about 50 ft up the hill directly behind our house and I thought I was gonna die before I got back.
In the house, I took a pain med and laid down and slept another two hours. But before I did that, I finally came up with a description for what it feels like when I'm really bad. I told my husband that my whole body feels like I was hit by lightning 30 minutes ago. Ends of fingers buzzing; burning electrical sensation throughout all of my body. It drains me of absolutely everything, and that is why I slept so well for 2 hours in the middle of the day.
Right now, it seems too much to type. I am only doing so because I don't want to lose the thought of how to describe the neuro feeling I get every day.
I woke up at 3 am in pain, took a pain pill and went back to bed, woke up at 8:20 am, then fell asleep in the recliner again for another 90 minutes. I woke up and made myself get up and moving. And I went outside and did a few light, slow things...raked, slowly, some leaves for my husband to put into the compost bin (very few leaves)...I walked about 50 ft up the hill directly behind our house and I thought I was gonna die before I got back.
In the house, I took a pain med and laid down and slept another two hours. But before I did that, I finally came up with a description for what it feels like when I'm really bad. I told my husband that my whole body feels like I was hit by lightning 30 minutes ago. Ends of fingers buzzing; burning electrical sensation throughout all of my body. It drains me of absolutely everything, and that is why I slept so well for 2 hours in the middle of the day.
Right now, it seems too much to type. I am only doing so because I don't want to lose the thought of how to describe the neuro feeling I get every day.
Thursday, November 6, 2008
Christmas in November
I experienced a fun thing this morning....
Want to brighten up a cloudy day? Been feeling blue and need your spirits lifted a bit?
Last week, I received in the mail an envelope of coupons for a bunch of junk made in China, all worth about 50 cents but selling for the remarkable price of $1 to $8 !! What a steal! I thought, "Hey, these are some things I can use! A garlic chopper, a tool to reach up and clean the ceiling fan blades, some screen patches to fix torn window screens. These things are cheap! I thought.
Well, I ordered them online and my four cheap items, with shipping, added up to $29! Oh well, I just went ahead with the order.
Today, the box arrived.
Being brain injured, I'd forgotten I'd ordered these things at all. When I saw the box, I remembered then that I'd placed the order, but could not remember anything I'd bought.
Wheee! Christmas! What fun I just had opening up my cheap plastic bunch o' junk! But really, some of these things are going to be really handy. Like the 10" tweezers! (Did I ever mention my eyebrows?)
In life, we all gotta look at the fun that is out there available. I could have been so disappointed at the garlic chopper with the cap that didn't even screw on, or the screen patches and I could have brought myself down with thoughts of "what a rip off!" But I've always been that "beer mug half full" kinda gal, and I did have a lovely time.
In fact, I've already cleaned my fan blades! And that one tool is actually really well-made!
Surprise!
Want to brighten up a cloudy day? Been feeling blue and need your spirits lifted a bit?
Last week, I received in the mail an envelope of coupons for a bunch of junk made in China, all worth about 50 cents but selling for the remarkable price of $1 to $8 !! What a steal! I thought, "Hey, these are some things I can use! A garlic chopper, a tool to reach up and clean the ceiling fan blades, some screen patches to fix torn window screens. These things are cheap! I thought.
Well, I ordered them online and my four cheap items, with shipping, added up to $29! Oh well, I just went ahead with the order.
Today, the box arrived.
Being brain injured, I'd forgotten I'd ordered these things at all. When I saw the box, I remembered then that I'd placed the order, but could not remember anything I'd bought.
Wheee! Christmas! What fun I just had opening up my cheap plastic bunch o' junk! But really, some of these things are going to be really handy. Like the 10" tweezers! (Did I ever mention my eyebrows?)
In life, we all gotta look at the fun that is out there available. I could have been so disappointed at the garlic chopper with the cap that didn't even screw on, or the screen patches and I could have brought myself down with thoughts of "what a rip off!" But I've always been that "beer mug half full" kinda gal, and I did have a lovely time.
In fact, I've already cleaned my fan blades! And that one tool is actually really well-made!
Surprise!
parents and their little boys
Our son is turning 28 soon.
He was conceived when we were snowed in for five months during the worst winter "since the 30's" in New Mexico. We lived 9 miles from where the snowplow stopped, literally on the Continental Divide on a beautiful, old ranch.
He was born in the Indian Capital of the World. We were by then working on a little ranch 40 miles south, where we were provided housing, a single-wide trailer set up on cinder blocks in a hidden canyon. We had electricity and water, but not much money. His father made $300 a month, working from the time in the mornings before the sun came up and he was milking the boss's cow until the dark of night when the cow needed milking again. I was hugely pregnant and waddled around the ranch visiting his father where I could.
One morning, I was washing out our clothes by hand, and hanging them outside to dry on the lariat rope we'd stretched between the trailer house and a pinon tree. Mostly, the line held heavy work jeans, dripping wet and already frozen in the November chill. I suddenly felt my water break, and so I finished hanging up the clothes, then walked down the hill to the "Cowboy Stopover," a local, convenience-type store that had a payphone. I called my doctor 40 miles away, and he said to shake a leg and get in to the hospital.
I trudged back up the hill to where my husband was up high on the roof of a new barn he was building and told him he needed to quit and come down and take me to the hospital. Then, I walked back back down a different dirt road to our trailer, my hips slipping out of place as I took each step.
He came home and collected me and my little suitcase, we drove the pickup down to our boss's saddle shop, to let him know that we would be gone and why. He asked, "Do you really have to go now? How long will you be gone?" My husband told him to take a flying leap (actually, I'm sure a much more obscene phrase was directed the boss's way) and we drove on in to Gallup, the town in which we'd been married eight years earlier.
28 years ago. Now, our son has recently married and his life seems really good. They have their struggles, but God has answered my prayers and given him a good life partner, and he has work, and they do a lot of fun things together.
I think it's so important for people to have what I call, "Yahoo Fun." I've called it that for years. And from what I hear from my son, they are doing that, out on boats and ATVs in the dunes. This lovely woman has brought him that.
To us, he's still our boy. How do you get out of the habit of thinking of him that way, when you've done it for 28 years? When his happiness is still first and foremost in your minds even though you are a thousand miles away? We don't try to change that thinking. We believe it's a good thing.
So, what to give this kid for his birthday? All we could come up with at first was a simple check so they could all go out to dinner. But my husband had a brilliant thought yesterday morning. He suggested we find a remote-control boat, for the whole family to enjoy out on the lake when they are out there boating. Or, if the weather is too cold for boating, they can play with it from the shore. They live in California, where the weather is pretty nice through the winter.
I found one online that was perfect. A boat 3 feet long! And free shipping! How perfect this all turned out. I can see him opening it and saying, "Oh, cool!" He always appreciates gifts, no matter what they are. He has a 13 yr. old stepson now, and both he and his mom will find this a lot of fun, too.
And that parent of the little boy who was born in the Indian Capital of the World, who grew up on ranches and played out in the hills and rode a small motorcycle when he was five along all the ranch roads, who started flying when he was 13 and owned his first plane when he was 16, who earned his commercial helicopter rating and became an FAA certified airplane mechanic...the parent of that little boy inside of us is well-satisfied, too.
He was conceived when we were snowed in for five months during the worst winter "since the 30's" in New Mexico. We lived 9 miles from where the snowplow stopped, literally on the Continental Divide on a beautiful, old ranch.
He was born in the Indian Capital of the World. We were by then working on a little ranch 40 miles south, where we were provided housing, a single-wide trailer set up on cinder blocks in a hidden canyon. We had electricity and water, but not much money. His father made $300 a month, working from the time in the mornings before the sun came up and he was milking the boss's cow until the dark of night when the cow needed milking again. I was hugely pregnant and waddled around the ranch visiting his father where I could.
One morning, I was washing out our clothes by hand, and hanging them outside to dry on the lariat rope we'd stretched between the trailer house and a pinon tree. Mostly, the line held heavy work jeans, dripping wet and already frozen in the November chill. I suddenly felt my water break, and so I finished hanging up the clothes, then walked down the hill to the "Cowboy Stopover," a local, convenience-type store that had a payphone. I called my doctor 40 miles away, and he said to shake a leg and get in to the hospital.
I trudged back up the hill to where my husband was up high on the roof of a new barn he was building and told him he needed to quit and come down and take me to the hospital. Then, I walked back back down a different dirt road to our trailer, my hips slipping out of place as I took each step.
He came home and collected me and my little suitcase, we drove the pickup down to our boss's saddle shop, to let him know that we would be gone and why. He asked, "Do you really have to go now? How long will you be gone?" My husband told him to take a flying leap (actually, I'm sure a much more obscene phrase was directed the boss's way) and we drove on in to Gallup, the town in which we'd been married eight years earlier.
28 years ago. Now, our son has recently married and his life seems really good. They have their struggles, but God has answered my prayers and given him a good life partner, and he has work, and they do a lot of fun things together.
I think it's so important for people to have what I call, "Yahoo Fun." I've called it that for years. And from what I hear from my son, they are doing that, out on boats and ATVs in the dunes. This lovely woman has brought him that.
To us, he's still our boy. How do you get out of the habit of thinking of him that way, when you've done it for 28 years? When his happiness is still first and foremost in your minds even though you are a thousand miles away? We don't try to change that thinking. We believe it's a good thing.
So, what to give this kid for his birthday? All we could come up with at first was a simple check so they could all go out to dinner. But my husband had a brilliant thought yesterday morning. He suggested we find a remote-control boat, for the whole family to enjoy out on the lake when they are out there boating. Or, if the weather is too cold for boating, they can play with it from the shore. They live in California, where the weather is pretty nice through the winter.
I found one online that was perfect. A boat 3 feet long! And free shipping! How perfect this all turned out. I can see him opening it and saying, "Oh, cool!" He always appreciates gifts, no matter what they are. He has a 13 yr. old stepson now, and both he and his mom will find this a lot of fun, too.
And that parent of the little boy who was born in the Indian Capital of the World, who grew up on ranches and played out in the hills and rode a small motorcycle when he was five along all the ranch roads, who started flying when he was 13 and owned his first plane when he was 16, who earned his commercial helicopter rating and became an FAA certified airplane mechanic...the parent of that little boy inside of us is well-satisfied, too.
Thursday, October 30, 2008
severe
Just now reading again that excerpt from Dr. B's report on my follow up visit, and seeing that not only did he write that I have FCS (Functional Cranial Settling) but there was that important word in there that I did not see before, so blinded was I by the bright lights of "FCS"...
"severe"
He wrote about what should be done until I can have the fusion surgery, starting with: "continue conservative management of severe FCS..."
severe....
It's odd how a word can hit you kinda hard sometimes.
"severe"
He wrote about what should be done until I can have the fusion surgery, starting with: "continue conservative management of severe FCS..."
severe....
It's odd how a word can hit you kinda hard sometimes.
Odd...
I posted before about this spot on my right calf, that feels like there is warm oil on it.
I've had some very bad Charlie Horses in this calf lately.
I'm remembering right after I broke my neck. I was lying in the hospital and was a mental mess, but I was sure the back of my head was bleeding. I felt warm fluid, like blood, in the occipital area. I begged the neurosurgeon to check back there, though he kept insisting it wasn't bleeding. Finally, he put a finger back there and it hurt so incredibly bad that I roughly pushed him away.
I also think back to that time and how badly the back of my head felt, that I spent a lot of time, when I was awake, thinking of how badly it felt when the EMTs put me onto that hard backboard. Bumping over dirt roads to leave the ranch and stopping at traffic and stop signs, I was delirious with pain, begging the EMT who was riding with me and watching over me to pray with me (he wouldn't).
I recall now that, in those days hazy with pain, I thought I had the most ingenious and revolutionary idea that, when I got all better, I would develop and it would help so many. A simple gel pad for the head to rest on while strapped onto the back board. I remember telling the neurosurgeon about this, tho he didn't seem so impressed. I suppose, now that I can think more clearly, that this is something most likely used often, just not in my case.
Anyway, I did get off track, as I was writing about my right calf. So, for a few days, I've had intermittent feelings of hot oil on the outside of the leg. Today, it has increased to feeling like that all the time. And tonight, the whole leg is hurting, the foot is throbbing and gets occasional shots of pain, and the calf feels like it's on the verge of a Charlie Horse all the time. I wonder if tonight, or early in the morning, I will get hit hard with that spasm that takes my breath away.
In reading the AME reports, the neurologist stated that, upon examination, I drag my right foot and have "mild spasicity." He was so right, it seems. Though the mild part might be in the past.
It's odd to have something so new come up now. It's not the worst thing anyone has ever experienced. It's nothing compared to the incredible headaches that my peers suffer. But it's new, it's worsening, and when you have what I do, you can't help but wonder if you might lose the use of the leg someday.
But these days, I face all of these things with a positive attitude. I know they are all pushing me willingly to the fusion. Something I dreaded has become a welcome goal. Now, I just pray Dr. B will proceed with my surgery in light of whatever my next bone scan results are. Dr. B, in his report after my follow up last May, wrote: "Patient is aware of possibility of CCF (craniocervical fusion) to be intraop aborted in case of normal DEXA scan but severe osteoporosis at C spine site."
I can't imagine going into surgery, and then waking up to find that no fusion took place, that my bones were not good enough to hold the screws that hold the hardware in place, that I will have to live like this and progressively get worse.
I've had some very bad Charlie Horses in this calf lately.
I'm remembering right after I broke my neck. I was lying in the hospital and was a mental mess, but I was sure the back of my head was bleeding. I felt warm fluid, like blood, in the occipital area. I begged the neurosurgeon to check back there, though he kept insisting it wasn't bleeding. Finally, he put a finger back there and it hurt so incredibly bad that I roughly pushed him away.
I also think back to that time and how badly the back of my head felt, that I spent a lot of time, when I was awake, thinking of how badly it felt when the EMTs put me onto that hard backboard. Bumping over dirt roads to leave the ranch and stopping at traffic and stop signs, I was delirious with pain, begging the EMT who was riding with me and watching over me to pray with me (he wouldn't).
I recall now that, in those days hazy with pain, I thought I had the most ingenious and revolutionary idea that, when I got all better, I would develop and it would help so many. A simple gel pad for the head to rest on while strapped onto the back board. I remember telling the neurosurgeon about this, tho he didn't seem so impressed. I suppose, now that I can think more clearly, that this is something most likely used often, just not in my case.
Anyway, I did get off track, as I was writing about my right calf. So, for a few days, I've had intermittent feelings of hot oil on the outside of the leg. Today, it has increased to feeling like that all the time. And tonight, the whole leg is hurting, the foot is throbbing and gets occasional shots of pain, and the calf feels like it's on the verge of a Charlie Horse all the time. I wonder if tonight, or early in the morning, I will get hit hard with that spasm that takes my breath away.
In reading the AME reports, the neurologist stated that, upon examination, I drag my right foot and have "mild spasicity." He was so right, it seems. Though the mild part might be in the past.
It's odd to have something so new come up now. It's not the worst thing anyone has ever experienced. It's nothing compared to the incredible headaches that my peers suffer. But it's new, it's worsening, and when you have what I do, you can't help but wonder if you might lose the use of the leg someday.
But these days, I face all of these things with a positive attitude. I know they are all pushing me willingly to the fusion. Something I dreaded has become a welcome goal. Now, I just pray Dr. B will proceed with my surgery in light of whatever my next bone scan results are. Dr. B, in his report after my follow up last May, wrote: "Patient is aware of possibility of CCF (craniocervical fusion) to be intraop aborted in case of normal DEXA scan but severe osteoporosis at C spine site."
I can't imagine going into surgery, and then waking up to find that no fusion took place, that my bones were not good enough to hold the screws that hold the hardware in place, that I will have to live like this and progressively get worse.
Trips to Town
Today, I went to town.
I actually live at the very edge, inside the city limits of a small town, 3500 pop.
So, I guess I live in town. But it doesn't feel like it here. There's a stretch of empty road between us and town without any houses, only oaks, Ponderosa Pine and wild turkey and deer.
We ARE a mile, though, from the center of town. So, today, my husband gave me a ride into town. I felt really sick and in pain, but thought I'd make myself get out and try to feel better. You know what I mean.
So, first we stop at the Community Store. This 2nd Hand shop is a great thing, they sell used items and the money goes to helping get food to the hungry in our community or to clothe them, find them a place to stay if they need it. There are no homeless in our town. I give all of my clothes I can't fit into any more to them...I took a big sack of cucumbers to them one day in late summer, too. I like supporting them.
The kind lady who received our big box and big shopping bag of stuff noticed me in the CTO vest, and said, "How long do you have to be in that?"
I know I could answer, "Oh not long" or something short, but this is a little town. To answer this way, it's just rude. It's like saying, without uttering the words, "None of your business." I'm not like that, I couldn't hurt anyone's feelings like that. And I do appreciate that people care enough to ask.
So, I quickly told her my story of how I broke my neck and when I'm going for surgery.
Leaving there, we drove to the hardware store. I picked up some gel stain and some Danish oil for an office project my husband and I are hoping to do this winter. The young lady who rang up my items said, "THAT looks uncomfortable!! What happened?"
I gave her my Readers Digest condensed version, one I know, oh so well. And thanked her for asking. I wouldn't want her to feel guilty about asking me. I want her to feel free to ask, and to not act like a disability is something you pretend doesn't exist.
We backed out of their parking lot and drove back into town to the General Store. This is such a great store, it's OLD and there is an rusty, weathered, for real, gas pump sitting on the curb outside of it. It's not sitting there as decoration (this isn't a tourist town) . It's never been painted. It's just sitting there because it was there when they used to sell gas there. Don't know how long ago that was, but the price of gas then was 39 cents a gallon.
I pick up the ziplock bags I needed and go to the cash register. I'm still wearing my CTO. The woman asked, "How long you gotta wear THAT thing?" I give her the same story as I have just related twice before in the last half hour.
We back out of there and head west on Main Street, then take a left on Columbus Avenue to drive about a half a mile to our post office. I go in to mail a book to someone in France, and the man behind the counter asked, "How is your neck doing?" I've long ago told him the "how I broke my neck" story, so I tell him not so hot and I'm ready for surgery. He asked what would they do for surgery. I described the rods that go from crown to C5 and then a halo brace.
He backed away from the desk and held his stomach and said, "I'm sorry, but I can't hear anymore. I feel like I'm going to faint." He told me that he could not take hospitals or hear stories about sick people, it always makes him want to faint. I told him he must have "sympathetic anxiety." I just made that up and felt quite proud of myself, but also stupid for making an elderly gent almost faint.
I walked out of the PO and put my mail on top of the Sentinel newspaper box, to look inside my purse for a couple of quarters for the paper. I didn't see a young black lab tied to the post behind the box until she lunged at me suddenly with treacherous barks and show of teeth! I jumped back and said to the woman who owned the dog, "Oh, that scared me!"
The woman said, "She never does that! It must be that thing you're wearing!"
I got into the truck and told my husband the story, and said, sardonically, "Oh, that made me feel so good! I love going to town!"
One more stop, at an antique store to find a birthday present for my new daughter in law. I wore the CTO inside...the woman at the counter asked about it....I briefly told her and thankfully, she didn't faint or own a dog.
No wonder I stay home!
I actually live at the very edge, inside the city limits of a small town, 3500 pop.
So, I guess I live in town. But it doesn't feel like it here. There's a stretch of empty road between us and town without any houses, only oaks, Ponderosa Pine and wild turkey and deer.
We ARE a mile, though, from the center of town. So, today, my husband gave me a ride into town. I felt really sick and in pain, but thought I'd make myself get out and try to feel better. You know what I mean.
So, first we stop at the Community Store. This 2nd Hand shop is a great thing, they sell used items and the money goes to helping get food to the hungry in our community or to clothe them, find them a place to stay if they need it. There are no homeless in our town. I give all of my clothes I can't fit into any more to them...I took a big sack of cucumbers to them one day in late summer, too. I like supporting them.
The kind lady who received our big box and big shopping bag of stuff noticed me in the CTO vest, and said, "How long do you have to be in that?"
I know I could answer, "Oh not long" or something short, but this is a little town. To answer this way, it's just rude. It's like saying, without uttering the words, "None of your business." I'm not like that, I couldn't hurt anyone's feelings like that. And I do appreciate that people care enough to ask.
So, I quickly told her my story of how I broke my neck and when I'm going for surgery.
Leaving there, we drove to the hardware store. I picked up some gel stain and some Danish oil for an office project my husband and I are hoping to do this winter. The young lady who rang up my items said, "THAT looks uncomfortable!! What happened?"
I gave her my Readers Digest condensed version, one I know, oh so well. And thanked her for asking. I wouldn't want her to feel guilty about asking me. I want her to feel free to ask, and to not act like a disability is something you pretend doesn't exist.
We backed out of their parking lot and drove back into town to the General Store. This is such a great store, it's OLD and there is an rusty, weathered, for real, gas pump sitting on the curb outside of it. It's not sitting there as decoration (this isn't a tourist town) . It's never been painted. It's just sitting there because it was there when they used to sell gas there. Don't know how long ago that was, but the price of gas then was 39 cents a gallon.
I pick up the ziplock bags I needed and go to the cash register. I'm still wearing my CTO. The woman asked, "How long you gotta wear THAT thing?" I give her the same story as I have just related twice before in the last half hour.
We back out of there and head west on Main Street, then take a left on Columbus Avenue to drive about a half a mile to our post office. I go in to mail a book to someone in France, and the man behind the counter asked, "How is your neck doing?" I've long ago told him the "how I broke my neck" story, so I tell him not so hot and I'm ready for surgery. He asked what would they do for surgery. I described the rods that go from crown to C5 and then a halo brace.
He backed away from the desk and held his stomach and said, "I'm sorry, but I can't hear anymore. I feel like I'm going to faint." He told me that he could not take hospitals or hear stories about sick people, it always makes him want to faint. I told him he must have "sympathetic anxiety." I just made that up and felt quite proud of myself, but also stupid for making an elderly gent almost faint.
I walked out of the PO and put my mail on top of the Sentinel newspaper box, to look inside my purse for a couple of quarters for the paper. I didn't see a young black lab tied to the post behind the box until she lunged at me suddenly with treacherous barks and show of teeth! I jumped back and said to the woman who owned the dog, "Oh, that scared me!"
The woman said, "She never does that! It must be that thing you're wearing!"
I got into the truck and told my husband the story, and said, sardonically, "Oh, that made me feel so good! I love going to town!"
One more stop, at an antique store to find a birthday present for my new daughter in law. I wore the CTO inside...the woman at the counter asked about it....I briefly told her and thankfully, she didn't faint or own a dog.
No wonder I stay home!
Wednesday, October 29, 2008
A Snake's Belly
I feel lower than that.
My legs are just so weak, with the pain not that bad due to the pain meds. But the weakness, I feel like I've been poured into my skin...a snake skin about to be shed.
I've not been able to even walk outside at all today. The compost bin is 100 ft away, and I couldn't get out there, though I wanted to. Sunny, nice day. Just could hardly move all day.
The weakness is diffuse throughout my body, hands seem too weak to type.
Why today? Usually when I have something like this (called a paroxysm, or sudden onset of symptoms), I can pinpoint what caused it.
One thing that I think will sound perhaps unlikely. Last night, I had a nice time picking out the music for the playlist I put on this site. And then listening to it. Now I understand why people like IPOD and such, they can listen to just their favorites. It's addictive, intoxicating.
And as I listened, I sang. I used to sing on stage with a couple of different bands, one a cowgirl band I helped found, and another a bluegrass band. I loved singing, but now, it's something I have to avoid. I have found that the act of singing greatly affects the skull base area.
It might be the opening and shutting of the jaw, or the resonator effect of the skull when one sings, I don't know. But my singing and harmonizing last night, I feel, caused this today. I'll try not to give into the temptation of singing again.
Tonight, I have that bruised feeling on top of my head where I landed so long ago. It's odd that this should still happen, obviously it's damaged nerves. I move my hair and the movement of each hair hurts at the scalp. If I touch the scalp, it feels like I knocked my head into something recently.
I also have a patch on the outside of my right leg, at the calf. It feels like it has hot oil on it, a liquid warmth, about 6x8 inches. I know this is from the spasicity I have in that right leg which causes me to drag it (according to the neurologist) and to have such painful Charlie Horses at night there.
Now, I'll slither off back to the recliner.
My legs are just so weak, with the pain not that bad due to the pain meds. But the weakness, I feel like I've been poured into my skin...a snake skin about to be shed.
I've not been able to even walk outside at all today. The compost bin is 100 ft away, and I couldn't get out there, though I wanted to. Sunny, nice day. Just could hardly move all day.
The weakness is diffuse throughout my body, hands seem too weak to type.
Why today? Usually when I have something like this (called a paroxysm, or sudden onset of symptoms), I can pinpoint what caused it.
One thing that I think will sound perhaps unlikely. Last night, I had a nice time picking out the music for the playlist I put on this site. And then listening to it. Now I understand why people like IPOD and such, they can listen to just their favorites. It's addictive, intoxicating.
And as I listened, I sang. I used to sing on stage with a couple of different bands, one a cowgirl band I helped found, and another a bluegrass band. I loved singing, but now, it's something I have to avoid. I have found that the act of singing greatly affects the skull base area.
It might be the opening and shutting of the jaw, or the resonator effect of the skull when one sings, I don't know. But my singing and harmonizing last night, I feel, caused this today. I'll try not to give into the temptation of singing again.
Tonight, I have that bruised feeling on top of my head where I landed so long ago. It's odd that this should still happen, obviously it's damaged nerves. I move my hair and the movement of each hair hurts at the scalp. If I touch the scalp, it feels like I knocked my head into something recently.
I also have a patch on the outside of my right leg, at the calf. It feels like it has hot oil on it, a liquid warmth, about 6x8 inches. I know this is from the spasicity I have in that right leg which causes me to drag it (according to the neurologist) and to have such painful Charlie Horses at night there.
Now, I'll slither off back to the recliner.
Tuesday, October 28, 2008
Alas, an additional diagnosis: Cranial Settling
What a surprise. I was reading a report written by an "Agreed Upon Medical Examiner" who saw me in his office last month for evaluation. He included pages and pages of detailed references he'd read and studied from my voluminous medical history. He caught something I never was told.
He read the report from my follow up in NY last May. I have not asked for a copy of this report, it just slipped my mind. And I have an additional diagnosis. Surprise.
"Functional Cranial Settling" per the good doctors at TCI.
So, I've done some investigation into FCS. I did not know that Cranial Settling is the same thing as Basilar Invagination. That is where the bony finger that sticks up from the C2, known as the odontoid or dens, sticks up through the foramen magnum into the brain. It's something of a big deal. I didn't realise I had this.
Here are some internet quotes I've found on FCS:
Cranial Settling The uppermost bony portion of the neck is called the dens or odontoid process. The skull rests on this process and rotates. Cranial settling occurs when this bone protrudes into the hole in the base of the skull called the foramen magnum. This can be congenital (from birth) or from conditions such as Paget's disease or arthritis. Cranial settling can cause pain in the lower part of the skull and upper neck. It may also cause compression of the spinal cord, which may cause extremity weakness and numbness. This condition can be treated by surgical removal of the dens followed by instrumented cervical fusion. http://www.bcm.edu/neurosurgery/defs/def_a-d.htm (Baylor)
tip of odontoid process, which may be expanded by surrounding pannus, is brought into contact with the cervicomedullary (brainstem) junction; http://www.wheelessonline.com/ortho/atlanto_axial_impaction_basilar_invagniation
The C-1 ring continuity prevents horizontal spreading caused by the wedging of C -1 between the occiput and C-2 and thus prevents cranial settling. www.aans.org/education/journal/neurosurgical/june99/6-6-7.asp-46k - (this shows me exactly what happened to me. I do not have C-1 ring continuity. I have a one inch gap between bone ends at one fracture site. Certainly it spread and allowed my skull to settle where it should not be.
Cranial settling is described in conjunction with rheumatoid basilar invagination and atlanto-axial instability, possibly representing the most life-threatening abnormality associated with rheumatoid arthritis. (however mine is not RA related by due to trauma) http://www.ncbi.nlm.nih.gov/pubmed/8303459
"Cranial settling, also called superior migration of the odontoid or basilar invagination"
This is something serious. I knew my skull had rotated backwards, but did not realise that I had basilar invagination, though it is something I have suspected for a couple of years. Dr. B had told me in May that my brainstem compression was due to the C1 and where the brainstem goes through it.
However, it is also GOOD in a way and I thank God I saw it. It gives me more, very clear and firm reasons to feel confident in moving forward in getting the fusion. I actually am confident now...but this just seals the deal.
He read the report from my follow up in NY last May. I have not asked for a copy of this report, it just slipped my mind. And I have an additional diagnosis. Surprise.
"Functional Cranial Settling" per the good doctors at TCI.
So, I've done some investigation into FCS. I did not know that Cranial Settling is the same thing as Basilar Invagination. That is where the bony finger that sticks up from the C2, known as the odontoid or dens, sticks up through the foramen magnum into the brain. It's something of a big deal. I didn't realise I had this.
Here are some internet quotes I've found on FCS:
Cranial Settling The uppermost bony portion of the neck is called the dens or odontoid process. The skull rests on this process and rotates. Cranial settling occurs when this bone protrudes into the hole in the base of the skull called the foramen magnum. This can be congenital (from birth) or from conditions such as Paget's disease or arthritis. Cranial settling can cause pain in the lower part of the skull and upper neck. It may also cause compression of the spinal cord, which may cause extremity weakness and numbness. This condition can be treated by surgical removal of the dens followed by instrumented cervical fusion. http://www.bcm.edu/neurosurgery/defs/def_a-d.htm (Baylor)
tip of odontoid process, which may be expanded by surrounding pannus, is brought into contact with the cervicomedullary (brainstem) junction; http://www.wheelessonline.com/ortho/atlanto_axial_impaction_basilar_invagniation
The C-1 ring continuity prevents horizontal spreading caused by the wedging of C -1 between the occiput and C-2 and thus prevents cranial settling. www.aans.org/education/journal/neurosurgical/june99/6-6-7.asp-46k - (this shows me exactly what happened to me. I do not have C-1 ring continuity. I have a one inch gap between bone ends at one fracture site. Certainly it spread and allowed my skull to settle where it should not be.
Cranial settling is described in conjunction with rheumatoid basilar invagination and atlanto-axial instability, possibly representing the most life-threatening abnormality associated with rheumatoid arthritis. (however mine is not RA related by due to trauma) http://www.ncbi.nlm.nih.gov/pubmed/8303459
"Cranial settling, also called superior migration of the odontoid or basilar invagination"
This is something serious. I knew my skull had rotated backwards, but did not realise that I had basilar invagination, though it is something I have suspected for a couple of years. Dr. B had told me in May that my brainstem compression was due to the C1 and where the brainstem goes through it.
However, it is also GOOD in a way and I thank God I saw it. It gives me more, very clear and firm reasons to feel confident in moving forward in getting the fusion. I actually am confident now...but this just seals the deal.
Sunday, October 26, 2008
Who I am
I know that there are many, many people in much worse pain than I.
I know that many of them also have challenging home situations: small children to care for and sick spouses to care for or ones who are not supportive.
What I write below is not a comparison. It's not meant to say I am better or worse than anyone else. I'm just stating who I am.
And I'm not sure how I got this way. But I suspect it is from over 35 years of hard work on western ranches. During that time, I not only "broke colts" and trained horses, but I bucked hay bales in from the field, stacking them into barns; I fixed fence and dug post holes; I worked at squeeze chutes and head catches doctoring cattle; I "calved out" cows, helping those in need with the process. I walked through the dark with a flashlight checking for cows in trouble during calving season. I drove truck and hauled horses. I drove draft teams. I rode lawn mowers and tractors. I cleaned the boss' house. I led out trail rides and I taught kids and dudes to ride.
I cleaned stalls and hauled feed. I did not ask a man to do what I needed done, unless it was welding or fixing a truck. I doctored spooky, wild horses when they wanted to kill me. I worked with calves to suck on new mamas who wanted to murder both the calf and me. I rode high mountain trails to find cattle and busted through brush far past where the trail ended.
Through it all, I learned instinctively to push past pain, cold, hot, tired, sick. To push past hard and sometimes to push past impossible. If a rattlesnake was in the way, I killed it. If a big rock was in the way, I moved it. My back was strong, my arms sinewy.
If it was 112 degrees outside, if the job had to be done, I still kept on.
If the temperature was 20 below or lower, with the wind blowing, it did not matter. I just put on more layers.
If I cut myself and was bleeding, I did not head to the emergency room. I kept working. One time, my husband was cutting down trees to build fence and I was pushing one as he cut it down, to make it fall a certain direction. His chainsaw bucked out of the cut and cut across my right knee. I have a 4 inch scar to prove it.
He looked up at me after seeing the tattered state of my jeans at the knee and blood starting to flow. I looked back at him, still pushing on the tree, and told him to finish the job. I never went to the ER for that. I never sewed it up. It healed on its own wonderfully.
I was no different than most ranch folks. This is how they work and live. Environment, equipment, animals, weather all pose challenges every day. If you only worked when conditions were perfect, you would never work. It was always either too dry, too hot, too wet, too cold.
And quite honestly, if I felt I had the flu or a bad cold, getting out on a horse would usually stir up enough endorphins that I felt better. I wrote a poem about this, called "Lure of the Leather." The last verse says,
"So you ask, why do I go when there is bad weather,
When I'm tired and weak and not feeling well.
But it's the lure of the lone woods, the draw of the leather,
And those places I've seen of which I cannot tell."
Now, there is today. Today, I can do virtually none of these things.
But still, I am that person. So, in my small way, I see how I operate. Today got me to thinking about it. I'm folding clothes from the dryer and I take stock of how I am feeling. My legs are throbbing and painful and weak. My feet are hurting. My arms are the worst, they are burning and tingling from the repetitive action of folding clothes. All over and throughout my body, I feel like the flu in a way, painfully weak (sorry to keep repeating this, it is the best to describe it all), burning, tingling itchy arms from spinal cord impingement in my neck, thighs that hurt as if I am having the worst day of period (though I am long past that), burning and often stabbing pain at the back of my head. What am I doing, having just made a peach cobbler, made beds, put the dishes into the dishwasher and wiped the counters, gotten dressed, and now folding clothes?
I have to think if I were, as I should be, somewhat normal, I'd surely be in bed. If I were not in chronic spinal cord pain and this sort of feeling suddenly came on, I'd be down to the ER in a split second. But there is no need to go, since this is how I feel every second of the day, week after week, month after month, year after year.
If I were only going to get things done when everything was perfect, I would not exist.
I know this speaks to so many who are reading this. I hope one of the things I can still do is to put words to what you feel and deal with. Because I certainly did not understand chronic pain until I began to go through it.
And anyway, just like that ride on a damn good horse up over the far ridge, maybe folding the clothes is stirring up a few endorphins.
I know that many of them also have challenging home situations: small children to care for and sick spouses to care for or ones who are not supportive.
What I write below is not a comparison. It's not meant to say I am better or worse than anyone else. I'm just stating who I am.
And I'm not sure how I got this way. But I suspect it is from over 35 years of hard work on western ranches. During that time, I not only "broke colts" and trained horses, but I bucked hay bales in from the field, stacking them into barns; I fixed fence and dug post holes; I worked at squeeze chutes and head catches doctoring cattle; I "calved out" cows, helping those in need with the process. I walked through the dark with a flashlight checking for cows in trouble during calving season. I drove truck and hauled horses. I drove draft teams. I rode lawn mowers and tractors. I cleaned the boss' house. I led out trail rides and I taught kids and dudes to ride.
I cleaned stalls and hauled feed. I did not ask a man to do what I needed done, unless it was welding or fixing a truck. I doctored spooky, wild horses when they wanted to kill me. I worked with calves to suck on new mamas who wanted to murder both the calf and me. I rode high mountain trails to find cattle and busted through brush far past where the trail ended.
Through it all, I learned instinctively to push past pain, cold, hot, tired, sick. To push past hard and sometimes to push past impossible. If a rattlesnake was in the way, I killed it. If a big rock was in the way, I moved it. My back was strong, my arms sinewy.
If it was 112 degrees outside, if the job had to be done, I still kept on.
If the temperature was 20 below or lower, with the wind blowing, it did not matter. I just put on more layers.
If I cut myself and was bleeding, I did not head to the emergency room. I kept working. One time, my husband was cutting down trees to build fence and I was pushing one as he cut it down, to make it fall a certain direction. His chainsaw bucked out of the cut and cut across my right knee. I have a 4 inch scar to prove it.
He looked up at me after seeing the tattered state of my jeans at the knee and blood starting to flow. I looked back at him, still pushing on the tree, and told him to finish the job. I never went to the ER for that. I never sewed it up. It healed on its own wonderfully.
I was no different than most ranch folks. This is how they work and live. Environment, equipment, animals, weather all pose challenges every day. If you only worked when conditions were perfect, you would never work. It was always either too dry, too hot, too wet, too cold.
And quite honestly, if I felt I had the flu or a bad cold, getting out on a horse would usually stir up enough endorphins that I felt better. I wrote a poem about this, called "Lure of the Leather." The last verse says,
"So you ask, why do I go when there is bad weather,
When I'm tired and weak and not feeling well.
But it's the lure of the lone woods, the draw of the leather,
And those places I've seen of which I cannot tell."
Now, there is today. Today, I can do virtually none of these things.
But still, I am that person. So, in my small way, I see how I operate. Today got me to thinking about it. I'm folding clothes from the dryer and I take stock of how I am feeling. My legs are throbbing and painful and weak. My feet are hurting. My arms are the worst, they are burning and tingling from the repetitive action of folding clothes. All over and throughout my body, I feel like the flu in a way, painfully weak (sorry to keep repeating this, it is the best to describe it all), burning, tingling itchy arms from spinal cord impingement in my neck, thighs that hurt as if I am having the worst day of period (though I am long past that), burning and often stabbing pain at the back of my head. What am I doing, having just made a peach cobbler, made beds, put the dishes into the dishwasher and wiped the counters, gotten dressed, and now folding clothes?
I have to think if I were, as I should be, somewhat normal, I'd surely be in bed. If I were not in chronic spinal cord pain and this sort of feeling suddenly came on, I'd be down to the ER in a split second. But there is no need to go, since this is how I feel every second of the day, week after week, month after month, year after year.
If I were only going to get things done when everything was perfect, I would not exist.
I know this speaks to so many who are reading this. I hope one of the things I can still do is to put words to what you feel and deal with. Because I certainly did not understand chronic pain until I began to go through it.
And anyway, just like that ride on a damn good horse up over the far ridge, maybe folding the clothes is stirring up a few endorphins.
Saturday, October 25, 2008
hypothermia
I mentioned a few posts back that I have experienced hypothermia, that euphoric drifting off to sleep which ultimately, if not checked, results in death. I thought I might share my story.
28 years ago, my husband and I took care of a high mountain ranch in New Mexico. We had some cows there and a bunch of horses, we hauled our drinking water from a spring a quarter-mile away, bucketed wash-water up from the hand-dug well behind the cook shack, and survived well without a telephone.
As winter came on, we laid up supplies, though I had certainly never bought groceries for a whole season before. We had laying-hens on the property to provide our eggs, we had plenty of hay in the barn and feed in the bins. I remember spending $200 on groceries, a princely sum back then, on foodstuffs I felt would last 120 days or more.
As the snows started, the beauty of the mountain valley we lived in, 12 miles from our nearest neighbors, cloaked the pines, bare aspen trees and subirrigated fields. We parked our Chevy pickup across the dirt "Forest" road that led to the ranch, on the other side of the little creek that promised muddy crossings in early Spring. The four-wheel-drive was chained up on all four tires, with extra weight in the bed and a full gas tank.
But the snow continued to pile up that year, without melting in between. The wind blew the snow into tall drifts which arced around the old log cabins on the place, including the one that once served as a post office long ago. We kept feeding the fire, feeding the livestock, and enjoying each others' company.
Feeling it was safest to set a certain day that we'd ride out to gather our mail from our closest neighbors (who'd been picking up our mail for us another 13 miles away in the small town of Ft. Defiance), we agreed upon the day of Wednesday. This way, we'd know our neighbors were home when we arrived after a tough ride through the deep snow. This was before cell phones, and we didn't own a snow machine. Weeks before, the truck proved useless in so much snow. After all, our ranch, Twin Springs, was a whole 9 miles from where the snow plow stopped.
I rode a big, rawboned Appaloosa named Amigo, a tank of a horse who marched and lifted his big knees up high to break trail through the snow. Amigo had eaten loco weed before we bought him, and was never reliable, but he worked well for me that winter.
I often had eggs stashed behind me in the saddle bags, which I gave to my neighbors to deliver for me to the feed store in town. I sold them for 90 cents a dozen, and if I was lucky, I made $1.80 a week.
In true, neighborly fashion, these ranchers closest to us would always invite us to put our horses in their barn, and then to step inside their old house to the smells of ranch bacon frying and fresh coffee.
As soon as we returned home, following the trail we'd just broken through hours before, we curried off the horses, fed them a good pile of mountain-meadow hay, and then headed to the cook shack where we were living, and enjoyed our mail.
Food started to become sparse, but we always had eggs from the chickens, and when one of the range cows calved, I coaxed her into the barn and trained her to allow me to milk her. We went at least a month with only pinto beans, eggs and milk to eat.
It turned out to be the worst winter on record since 1933. Snow kept building up, eventually too deep even for old Amigo. The snow crusted over, making it even worse for horses to try to get through. We eventually started walking the nine miles out, leaving early in the morning to enjoy the relative ease of walking on crust. Often, we led a Shetland pony named Chubby, who was tacked up with a pack saddle and ready to bring home the dog food we'd asked our neighbors to pick up and have ready for us, or maybe a sack of potatoes.
I wasn't aware of it at the time, but I was pregnant when in the Spring we were hiking out, 18 miles round trip in one day, struggling through deep snow and weak crust that our weight would often break through, joltingly and adding to our fatigue. Often, the snow had drifted to where we didn't have a clue where the road was, so we followed the small power line that led to our ranch. We'd stop along the way, sit under a tree, and maybe open up a letter or two, to eagerly digest word from the outside, a world that seemed so far from where and how we lived.
One thing I recall is that every Wednesday, we had to decide if we were going to go out to the neighbors or not. Was it snowing? Was it going to snow? What was the weatherman on our radio predicting? Is it safe to try to go?
But...if we don't go, then it is a whole week until we can try to get out again! Because we must travel on a Wednesday, otherwise we might find an empty, locked house when we got to our neighbors'. With sadness, we called off the trip for that week due to bad weather. Then the next Wednesday, again, the weather was bad. I remember how sad it was when we had to forego traveling out 3 weeks in a row. How we wanted our mail and craved other people's voices!
Hiking back one time, with my backpack laden with mail and goodies, I felt weaker and weaker. It was cold, spitting snow, and we were following the power line, not giving thought to where the road actually lay. I felt extremely sleepy and weak, and unable to lift another leg. I stopped and told Pete, with all sincerity and solemnity, "Go on ahead to the ranch, feed the stock. I am going to go lie down under that pine tree where there is no snow. I'll be happy there. I'll sleep the night and then you can come back for me in the morning."
This made perfect sense to me and I was dead-on serious. Thankfully, Pete had his wits about him and urged me to press onward, saying the ranch was only one mile away. I did, and he was right, we were almost within shouting distance of the old log cabin.
Five months total, we were snowed in on that ranch. We had many experiences that I will never forget, most of them fun and laughable. We inner-tubed on a nearby hill; we fashioned skiis from old wooden bed-slats, and using mop and broom handles for ski poles, we swooshed around the valley, marveling as we glided over places where the barbed wire fences were unseen, but we knew they were there. We played cards, guitars and got along amiably well. I was afflicted with boils on the back of my neck, and Pete lanced them for me with a rattlesnake-bite kit. We were warm, we had plenty of protein to eat, and I don't recall any feelings of hopelessness or helplessness. When the snow melted and the mud dried up enough for us to drive our Chevy out and go to town, we loaded up the loco'ed Appaloosa and sold him in town. When the horse trader asked us how much we wanted for him, Pete told him just enough to buy a large pizza!
Later, I read the classic symptoms of hypothermia and realised that they were exactly what I had experienced that night as I begged to go to sleep under a tree.
28 years ago, my husband and I took care of a high mountain ranch in New Mexico. We had some cows there and a bunch of horses, we hauled our drinking water from a spring a quarter-mile away, bucketed wash-water up from the hand-dug well behind the cook shack, and survived well without a telephone.
As winter came on, we laid up supplies, though I had certainly never bought groceries for a whole season before. We had laying-hens on the property to provide our eggs, we had plenty of hay in the barn and feed in the bins. I remember spending $200 on groceries, a princely sum back then, on foodstuffs I felt would last 120 days or more.
As the snows started, the beauty of the mountain valley we lived in, 12 miles from our nearest neighbors, cloaked the pines, bare aspen trees and subirrigated fields. We parked our Chevy pickup across the dirt "Forest" road that led to the ranch, on the other side of the little creek that promised muddy crossings in early Spring. The four-wheel-drive was chained up on all four tires, with extra weight in the bed and a full gas tank.
But the snow continued to pile up that year, without melting in between. The wind blew the snow into tall drifts which arced around the old log cabins on the place, including the one that once served as a post office long ago. We kept feeding the fire, feeding the livestock, and enjoying each others' company.
Feeling it was safest to set a certain day that we'd ride out to gather our mail from our closest neighbors (who'd been picking up our mail for us another 13 miles away in the small town of Ft. Defiance), we agreed upon the day of Wednesday. This way, we'd know our neighbors were home when we arrived after a tough ride through the deep snow. This was before cell phones, and we didn't own a snow machine. Weeks before, the truck proved useless in so much snow. After all, our ranch, Twin Springs, was a whole 9 miles from where the snow plow stopped.
I rode a big, rawboned Appaloosa named Amigo, a tank of a horse who marched and lifted his big knees up high to break trail through the snow. Amigo had eaten loco weed before we bought him, and was never reliable, but he worked well for me that winter.
I often had eggs stashed behind me in the saddle bags, which I gave to my neighbors to deliver for me to the feed store in town. I sold them for 90 cents a dozen, and if I was lucky, I made $1.80 a week.
In true, neighborly fashion, these ranchers closest to us would always invite us to put our horses in their barn, and then to step inside their old house to the smells of ranch bacon frying and fresh coffee.
As soon as we returned home, following the trail we'd just broken through hours before, we curried off the horses, fed them a good pile of mountain-meadow hay, and then headed to the cook shack where we were living, and enjoyed our mail.
Food started to become sparse, but we always had eggs from the chickens, and when one of the range cows calved, I coaxed her into the barn and trained her to allow me to milk her. We went at least a month with only pinto beans, eggs and milk to eat.
It turned out to be the worst winter on record since 1933. Snow kept building up, eventually too deep even for old Amigo. The snow crusted over, making it even worse for horses to try to get through. We eventually started walking the nine miles out, leaving early in the morning to enjoy the relative ease of walking on crust. Often, we led a Shetland pony named Chubby, who was tacked up with a pack saddle and ready to bring home the dog food we'd asked our neighbors to pick up and have ready for us, or maybe a sack of potatoes.
I wasn't aware of it at the time, but I was pregnant when in the Spring we were hiking out, 18 miles round trip in one day, struggling through deep snow and weak crust that our weight would often break through, joltingly and adding to our fatigue. Often, the snow had drifted to where we didn't have a clue where the road was, so we followed the small power line that led to our ranch. We'd stop along the way, sit under a tree, and maybe open up a letter or two, to eagerly digest word from the outside, a world that seemed so far from where and how we lived.
One thing I recall is that every Wednesday, we had to decide if we were going to go out to the neighbors or not. Was it snowing? Was it going to snow? What was the weatherman on our radio predicting? Is it safe to try to go?
But...if we don't go, then it is a whole week until we can try to get out again! Because we must travel on a Wednesday, otherwise we might find an empty, locked house when we got to our neighbors'. With sadness, we called off the trip for that week due to bad weather. Then the next Wednesday, again, the weather was bad. I remember how sad it was when we had to forego traveling out 3 weeks in a row. How we wanted our mail and craved other people's voices!
Hiking back one time, with my backpack laden with mail and goodies, I felt weaker and weaker. It was cold, spitting snow, and we were following the power line, not giving thought to where the road actually lay. I felt extremely sleepy and weak, and unable to lift another leg. I stopped and told Pete, with all sincerity and solemnity, "Go on ahead to the ranch, feed the stock. I am going to go lie down under that pine tree where there is no snow. I'll be happy there. I'll sleep the night and then you can come back for me in the morning."
This made perfect sense to me and I was dead-on serious. Thankfully, Pete had his wits about him and urged me to press onward, saying the ranch was only one mile away. I did, and he was right, we were almost within shouting distance of the old log cabin.
Five months total, we were snowed in on that ranch. We had many experiences that I will never forget, most of them fun and laughable. We inner-tubed on a nearby hill; we fashioned skiis from old wooden bed-slats, and using mop and broom handles for ski poles, we swooshed around the valley, marveling as we glided over places where the barbed wire fences were unseen, but we knew they were there. We played cards, guitars and got along amiably well. I was afflicted with boils on the back of my neck, and Pete lanced them for me with a rattlesnake-bite kit. We were warm, we had plenty of protein to eat, and I don't recall any feelings of hopelessness or helplessness. When the snow melted and the mud dried up enough for us to drive our Chevy out and go to town, we loaded up the loco'ed Appaloosa and sold him in town. When the horse trader asked us how much we wanted for him, Pete told him just enough to buy a large pizza!
Later, I read the classic symptoms of hypothermia and realised that they were exactly what I had experienced that night as I begged to go to sleep under a tree.
Thursday, October 23, 2008
Blue and Gold Days
Here is a poem written and published by my mother, for October.
THE BLUE AND GOLD DAYS
'Oh, its a beautiful blue and gold day,
A patch of the bluest sky
Is seen through the autumnal haze
of golden leaves before they die.
A purple aster sways in the breeze
A brave and lovely bloom
Its beauty we will treasure
For yes, the soul has room.
Far away the old hills dressed in splendor
Where God must surely dwell,
Await whatever winds may blow
And seem to whisper "all is well. "
Jean Brannigan--
THE BLUE AND GOLD DAYS
'Oh, its a beautiful blue and gold day,
A patch of the bluest sky
Is seen through the autumnal haze
of golden leaves before they die.
A purple aster sways in the breeze
A brave and lovely bloom
Its beauty we will treasure
For yes, the soul has room.
Far away the old hills dressed in splendor
Where God must surely dwell,
Await whatever winds may blow
And seem to whisper "all is well. "
Jean Brannigan--
Ginger drops for nausea
A good friend read one of my blog posts that mentions I'd like to find some ginger drops for nausea, and sent me a box of some the other day.
I tried them and was amazed how much it helps with nausea, motion sickness, and also gives a little energy, too!
Here is the link to this product where you can order it online. I know lots of people reading this probably deal with nausea from their spinal cord/chiari/brainstem issues.
http://www.gingerpeople.com/order_gingins.html
I tried them and was amazed how much it helps with nausea, motion sickness, and also gives a little energy, too!
Here is the link to this product where you can order it online. I know lots of people reading this probably deal with nausea from their spinal cord/chiari/brainstem issues.
http://www.gingerpeople.com/order_gingins.html
Monday, October 20, 2008
Storm's movin' in
Weatherwise...dark clouds...call for snow on the mountain passes. The colors and hues of Fall are delicious and sense-inducing. Acorns on the lawn draw in wild turkey and deer that were gone all summer come back to nibble and taste. Are they all there? The big bucks we saw often in our yard 2 weeks ago have fled somewhere since hunting season was in full force. I hope they made it, too.
The weekend was slow and quiet and nice. Last evening, I picked the last two gladiola spikes from my garden and placed them in an old milkshake can with lots of maroon mums...then a cluster of bright yellow mums for the top of the mantle and a clear vase full of Japanese lanterns and Autumn, my favorite time of year, is fully present in our household. A colorful, autumnal colored saddle blanket set at a diagonal in the middle of the large living room thrills my heart. Little tiny things, making the environment beautiful and luring the senses and eyes, it's the way I've always been and it helps me love the day.
Yesterday, I made an apple crisp and after being outside watching my husband transplant some more little bushes for me and then walking inside, the assault of appley-cinnamony-nutmeggy odors on such a pleasant day, ah such a delight.
Today, I head to my local doctor to discuss my pain meds. I am off the morphine altogether. Taking Percocet every four hours even when I don't want to, meaning, I will always try to push as long as I can between pills. This way, I feel, it does keep me from being dependent on them, and it usually helps to cut down on one pill in the day. But Percocet has acetomeniphen in it and that is hard on the liver, I guess. So, I'm going to discuss if I can get oxycodone, perhaps a stronger dose of it, and no tylenol in it. We'll see.
I am feeling less of the really bad pain because I am doing so little and not walking. This is nice to wake up in the middle of the night and not have that really bad, hip/leg/foot pain. But the last two mornings, I've been alarmingly awakened with a severe charley horse on my calf. I hold my knee and pray to God that it will pass, it feels so severe. And then the leftover pain keeps me awake from then on. But last night, I had an almost solid 6 hour sleep, a gift.
The weekend was slow and quiet and nice. Last evening, I picked the last two gladiola spikes from my garden and placed them in an old milkshake can with lots of maroon mums...then a cluster of bright yellow mums for the top of the mantle and a clear vase full of Japanese lanterns and Autumn, my favorite time of year, is fully present in our household. A colorful, autumnal colored saddle blanket set at a diagonal in the middle of the large living room thrills my heart. Little tiny things, making the environment beautiful and luring the senses and eyes, it's the way I've always been and it helps me love the day.
Yesterday, I made an apple crisp and after being outside watching my husband transplant some more little bushes for me and then walking inside, the assault of appley-cinnamony-nutmeggy odors on such a pleasant day, ah such a delight.
Today, I head to my local doctor to discuss my pain meds. I am off the morphine altogether. Taking Percocet every four hours even when I don't want to, meaning, I will always try to push as long as I can between pills. This way, I feel, it does keep me from being dependent on them, and it usually helps to cut down on one pill in the day. But Percocet has acetomeniphen in it and that is hard on the liver, I guess. So, I'm going to discuss if I can get oxycodone, perhaps a stronger dose of it, and no tylenol in it. We'll see.
I am feeling less of the really bad pain because I am doing so little and not walking. This is nice to wake up in the middle of the night and not have that really bad, hip/leg/foot pain. But the last two mornings, I've been alarmingly awakened with a severe charley horse on my calf. I hold my knee and pray to God that it will pass, it feels so severe. And then the leftover pain keeps me awake from then on. But last night, I had an almost solid 6 hour sleep, a gift.
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