I mean, I'm still in my old brace. We drove the 55 miles one way to the orthotics place (just one the perks when you live out in the middle of nowhere and have that fantastic scenery to drive through!) and got there and "Tom" told me that the brace had not arrived in the mail. Bummer!
But such a nice man. I told him my problems with the Aspen Collar, how it doesn't support me occipitally, and he went in the back room, I could hear grinding and sewing machine and he came back, he'd put a rounded firm foam pad under the foam rubber pad in the back at just the right place, it's attached by Velcro in case I end up not liking it, and he also replaced the worn out velcro tab that keeps the thing on.
I LOVE it. On the way home, I was able to fall asleep but not painfully. As I've written before, in the car or in a chair, my head now naturally rotates backward putting the weight of the skull even more on the occipital area and that puts me into a deep, painful sleep.
But with the customized brace, I slept on the way home in a normal sleep. It was wonderful and seemed so unusual after so many months...in fact, a year, of having it the other way.
I'll need to go back next week or something to get the new Marlin collar. I've really come to be more accepting of the brace now that I know I won't be having the fusion, at least for quite awhile. I wear it much more now.
I saw a purple crocus about to open yesterday in the front flower bed. I wish I could get down there and get out the dead stalks and leaves from last year's plants. I am thinking of getting my rolling desk chair out there and then using long handled "loppers" to cut those things loose, then use my "reacher grabber" tool to pick them up and put them into a light bucket to take to the compost heap. If I could do it normally, it'd only be a 15 minute job!
blessings abound
Thursday, February 28, 2008
Tuesday, February 26, 2008
Trips to town...
Look something like this!
Columbia River Gorge, Mt. Hood, Stonehenge at Maryhill (built in 1929 as a memorial to WWI soldiers).
New brace, slow walk, good dog
Tomorrow I go for my new Marlin neck brace. I'm psyched! Since the fusion is off for awhile, I have to accept that the brace is going to be the norm for me and be happy with that. Today, I wore my old one a lot here at home ( I've been wearing it always in the truck and only occasionally at home). I've been feeling really puny for several days and today was no exception. But the collar did seem to help.
I feel in a catch-22...when I sit down, my legs and back hurt and buzz and are more than uncomfortable. The right occipital area on the back of my head starts into stabbing pain. If I'm up, walking or doing stuff, it's all hurting some, but is also contributing to more pain when I do sit down again. And I feel so painfully weak. Thankfully, though, the meds help with some things.
I just got back from a SLOOOOWWWW walk, my normal pace. I mean, I walk SLOW! But I also notice that walking deliberately (boy, did I have a hard, hard time spelling that word! Finally had to use spell checker and me an editor once! diberately, dilbatrly, deberately....geesh!), it is a work out to some extent. You don't have any forward momentum to push you along, so every step is like starting anew, every step up is like starting from a standstill.
I learned the results of my thyroid ultrasound were very normal today. YAY!
Today I really noticed the smell of the pines and the wet earth while I was out with the Good Dog Quincy. The snow is mostly gone. I realized that snow doesn't really have a smell. Pinecones and sap and needles and little green grass and wet earth do. That's when I know Spring is definitely coming. The weatherman yesterday said we have seen our last snow of the year. I hope he's right. My little deer path is becoming more and more user-friendly, for I roll little rocks and branches from the path with my feet every once in awhile. It's the perfect length of walk for me and a place I know I'll be using a lot. What a gift! I know, I know, I've said that before!
Hundreds of crocuses are coming up! We bought this place end of March last year and every few weeks showed evidence of all the bulbs that the previous owner had planted. Irises, lilies, hyacinth, daffodils, tulips, gladiolas, on and on...blossoming blessings all spring, summer, fall. The owner had told us when we moved in on April 1st (we were greeted by profuse daffodils!) that we had just missed the crocuses. I figured she meant a few...I had no idea there would be so many, but the little green, spikey leaves poking their way up through the wet, cold ground tells me that this is going to be quite a show!
Today was about 60 degrees. My mother sent me a box of things that she'd put together for Christmas and never got around to sending it, then thought she'd send it for my birthday and that passed, so I got it today. What a delight! And one thing was a shirt that belonged to my late stepfather, it's a large, comfy cotton shirt, long sleeves, button up, with lots of hunting dogs on it. I love it! Perfect weight for this time of year. For hiking slowly through the woods with a little black-mutt-dog by my side.
I feel in a catch-22...when I sit down, my legs and back hurt and buzz and are more than uncomfortable. The right occipital area on the back of my head starts into stabbing pain. If I'm up, walking or doing stuff, it's all hurting some, but is also contributing to more pain when I do sit down again. And I feel so painfully weak. Thankfully, though, the meds help with some things.
I just got back from a SLOOOOWWWW walk, my normal pace. I mean, I walk SLOW! But I also notice that walking deliberately (boy, did I have a hard, hard time spelling that word! Finally had to use spell checker and me an editor once! diberately, dilbatrly, deberately....geesh!), it is a work out to some extent. You don't have any forward momentum to push you along, so every step is like starting anew, every step up is like starting from a standstill.
I learned the results of my thyroid ultrasound were very normal today. YAY!
Today I really noticed the smell of the pines and the wet earth while I was out with the Good Dog Quincy. The snow is mostly gone. I realized that snow doesn't really have a smell. Pinecones and sap and needles and little green grass and wet earth do. That's when I know Spring is definitely coming. The weatherman yesterday said we have seen our last snow of the year. I hope he's right. My little deer path is becoming more and more user-friendly, for I roll little rocks and branches from the path with my feet every once in awhile. It's the perfect length of walk for me and a place I know I'll be using a lot. What a gift! I know, I know, I've said that before!
Hundreds of crocuses are coming up! We bought this place end of March last year and every few weeks showed evidence of all the bulbs that the previous owner had planted. Irises, lilies, hyacinth, daffodils, tulips, gladiolas, on and on...blossoming blessings all spring, summer, fall. The owner had told us when we moved in on April 1st (we were greeted by profuse daffodils!) that we had just missed the crocuses. I figured she meant a few...I had no idea there would be so many, but the little green, spikey leaves poking their way up through the wet, cold ground tells me that this is going to be quite a show!
Today was about 60 degrees. My mother sent me a box of things that she'd put together for Christmas and never got around to sending it, then thought she'd send it for my birthday and that passed, so I got it today. What a delight! And one thing was a shirt that belonged to my late stepfather, it's a large, comfy cotton shirt, long sleeves, button up, with lots of hunting dogs on it. I love it! Perfect weight for this time of year. For hiking slowly through the woods with a little black-mutt-dog by my side.
Saturday, February 23, 2008
My OR report
I received my OR report today from my cord detethering surgery last November.
My surgeon wrote my Pre-operative Diagnosis:
"Tethered cord syndrome with elongation (53.3 mm) and downward displacement of the brainstem in association with low-lying cerebellar tonsils (3 mm tonsillar herniation); post-traumatic craniocervical instability with incompletely fixed cranial settling and posterior dislocation of the occipital condyles following a C1 Jefferson fracture (2004)"
The post-operative diagnosis states, ""Same: ultrathin dura with L3-4 and L4-5 ectasias."
[I looked up "ectasia" and it means "distention, dilation or expansion."]
I can't explain it because I sure didn't know what this would feel like before this journey I'm on, but it's really a GOOD feeling knowing exactly what was found and is known after world-class experts have performed surgery on you and taken the time and care to evaluate all the imaging done. After so many years of being shined on, often by well-meaning doctors, who really didn't know the first thing about how badly I was really injured. It seemed like they just couldn't believe anyone could be injured badly if they were walking and talking! Maybe I'm an anomaly, but I don't think so.
Anyway, to have on paper, in black ink, exactly what was seen in the best imaging anywhere (much of this was discovered while under invasive cervical traction while at the same time, CT scans were being taken), that feels pretty darn good. Odd as that may seem.
My surgeon wrote my Pre-operative Diagnosis:
"Tethered cord syndrome with elongation (53.3 mm) and downward displacement of the brainstem in association with low-lying cerebellar tonsils (3 mm tonsillar herniation); post-traumatic craniocervical instability with incompletely fixed cranial settling and posterior dislocation of the occipital condyles following a C1 Jefferson fracture (2004)"
The post-operative diagnosis states, ""Same: ultrathin dura with L3-4 and L4-5 ectasias."
[I looked up "ectasia" and it means "distention, dilation or expansion."]
I can't explain it because I sure didn't know what this would feel like before this journey I'm on, but it's really a GOOD feeling knowing exactly what was found and is known after world-class experts have performed surgery on you and taken the time and care to evaluate all the imaging done. After so many years of being shined on, often by well-meaning doctors, who really didn't know the first thing about how badly I was really injured. It seemed like they just couldn't believe anyone could be injured badly if they were walking and talking! Maybe I'm an anomaly, but I don't think so.
Anyway, to have on paper, in black ink, exactly what was seen in the best imaging anywhere (much of this was discovered while under invasive cervical traction while at the same time, CT scans were being taken), that feels pretty darn good. Odd as that may seem.
Friday, February 22, 2008
American Beauty
Here she is, the lovely doe who was visiting our backyard a couple of days ago, accompanied by her entourage of last year's twins. What a beauty she is!
Wednesday, February 20, 2008
Ultra sound today
I had my thyroid ultrasound today and it went well. The technician was much better than the one who had done the US before. She just had me lie flat on the table and didn't hyperextend my neck at all. The man who had done the US 18 months ago in CA had my shoulders up on pillows and extended my head downward and back and even crushed my windpipe enough to shut off my air. This didn't happen at all.
She asked me today what had happened to me so I told her the story briefly of having a 4 place fracture of the C1 and my skull having dislocated from my Cspine. She said that recently they have had two patients in that little hospital (and it's small, really small!) with the dislocated skull. One was a man who fell from a ladder and one was a woman who had been beaten. She remarked how amazing that was since that injury is so rare.
Recently, I talked with a waitress in town whose 32 year old son's head was run over by a tractor, fracturing his skull base. He is home with her now, wearing an Aspen Collar like I was wearing when she approached me in the restaurant. I told her to watch for brain injury and brought a book I have on it to her to borrow and read.
Awesome weather today. We aren't getting to see much of the eclipse due to clouds. This town is known as one of the optimum places to view lunar eclipses in North America.
I have the photos now of the deer and will post one here soon, I promise.
God bless, y'all.
She asked me today what had happened to me so I told her the story briefly of having a 4 place fracture of the C1 and my skull having dislocated from my Cspine. She said that recently they have had two patients in that little hospital (and it's small, really small!) with the dislocated skull. One was a man who fell from a ladder and one was a woman who had been beaten. She remarked how amazing that was since that injury is so rare.
Recently, I talked with a waitress in town whose 32 year old son's head was run over by a tractor, fracturing his skull base. He is home with her now, wearing an Aspen Collar like I was wearing when she approached me in the restaurant. I told her to watch for brain injury and brought a book I have on it to her to borrow and read.
Awesome weather today. We aren't getting to see much of the eclipse due to clouds. This town is known as one of the optimum places to view lunar eclipses in North America.
I have the photos now of the deer and will post one here soon, I promise.
God bless, y'all.
Monday, February 18, 2008
Deer caught in sunlight
Right now, there is a small band of deer grazing on fallen acorns on the bank right above our house, about 40 feet away. I got out the camera with the long lens and took some photos. When they come back, I'll post a few here. It's a gloriously sunny day here and I intend to make myself a latte and go sit on the Adirondack chairs (sitting on one, feet up on the other) in the sun on the patch of bare ground on the front lawn and read some of my book. It's an interesting saga of Oregon Trail pioneers called All Together in One Place. It moves as slow as the wheels of the ox-pulled wagons, but the writer is surprisingly gifted in how she has put herself into the place of the main character, Mazy, who has been ripped from her beloved farm in Wisconsin to follow her adventure-seeking husband, Jeremy.
I'm in very bad shape today. Must be the walking and all of it has accumulated. I had no wrenching experiences or falls. I haven't really been lifting or even going overboard on housework. All of my tethered cord symptoms are back in full flare. A strong feeling of "neuro" in my feet, legs extremely weak, brain not working well and pain in my lower back. I've upped the pain meds slightly. And taking it easy on the front lawn with a blanket to keep me warm sounds like a good plan. Besides, the Vitamin D from the sun is so good for the bones.
I know I'm feeling bad when my husband offers to help me build a small set of shelves for the bathroom and I decline!
Today, I am 56 years young. My mother tells me I was born during a raging New Hampshire blizzard. I also made my entrance into this beautiful world on my half-brother's 9th birthday.
I feel no need for celebrations or cake or presents. My husband already purchased three items for my birthday which I picked out last week. My mother has called, a few friends have emailed their birthday greetings...I'm good!
Now, I'm going to warm up that espresso machine and go watch that little band of deer. What birthday gifts I have!
I'm in very bad shape today. Must be the walking and all of it has accumulated. I had no wrenching experiences or falls. I haven't really been lifting or even going overboard on housework. All of my tethered cord symptoms are back in full flare. A strong feeling of "neuro" in my feet, legs extremely weak, brain not working well and pain in my lower back. I've upped the pain meds slightly. And taking it easy on the front lawn with a blanket to keep me warm sounds like a good plan. Besides, the Vitamin D from the sun is so good for the bones.
I know I'm feeling bad when my husband offers to help me build a small set of shelves for the bathroom and I decline!
Today, I am 56 years young. My mother tells me I was born during a raging New Hampshire blizzard. I also made my entrance into this beautiful world on my half-brother's 9th birthday.
I feel no need for celebrations or cake or presents. My husband already purchased three items for my birthday which I picked out last week. My mother has called, a few friends have emailed their birthday greetings...I'm good!
Now, I'm going to warm up that espresso machine and go watch that little band of deer. What birthday gifts I have!
Self-control...do I have enough?
I know I don't have any willpower and self-control is the same thing, isn't it?
I can recall in 1978 when I first came to the Lord, I was a smoker. And I wanted to quit smoking, it felt like a calling put upon my heart. Yet, I knew I'd tried many times before and couldn't make it until noon before I would grouchily demand my husband give me a cigarette!
It's a story for another time, but suffice it to say that I learned I have zero willpower and only through the power of God was I able to quit smoking 30 years ago. And I'm so thankful that I did. Cigarettes are terribly expensive these days.
For the last six days, I've been taking little walks across the road with my dog. I've only been gone 20 minutes tops and that is walking very slowly and stopping to train the dog or sit on my prayer rock. I've felt, as you have read here lately, like this area is a gift to me and I should be content with the proximity of such beauty to enjoy.
But I've also been getting worse and worse with pre-surgery symptoms. Tonight, it's gotten a lot worse, so I will simply have to stop walking over there every day. Do I have the self-control? Nature becomes an addiction for me very easily. Quincy will be terribly disappointed. But I have to get back to feeling better physically, even though the walks made me feel wonderful mentally and emotionally. It's like I can't have both, at least not if it involves daily walks.
Last night (it's 4:30 am now and I've been up an hour) I woke up twice with so much pain below the waist including burning hips and calves. Old, familiar stuff. And I remember the words from my NY nurse: "If it causes a flare up, stop doing it." I hope I haven't done any permanent damage.
I also wanted to record here for my own purposes that I have started developing a stabbing pain under the right shoulder blade. It's not a sore muscle and it's been going on for maybe a month. I can feel it now as I write and the meds aren't touching the pain.
I think I might go back to making a whiry gig. The one I made late last year is working like a champ, the woodpecker pecking like crazy at the notch in the tree. We are getting some nice breezes and since my husband doctored my creation for balance and added some clear fin extensions on the propeller blades, it's an engineering marvel!!
I can recall in 1978 when I first came to the Lord, I was a smoker. And I wanted to quit smoking, it felt like a calling put upon my heart. Yet, I knew I'd tried many times before and couldn't make it until noon before I would grouchily demand my husband give me a cigarette!
It's a story for another time, but suffice it to say that I learned I have zero willpower and only through the power of God was I able to quit smoking 30 years ago. And I'm so thankful that I did. Cigarettes are terribly expensive these days.
For the last six days, I've been taking little walks across the road with my dog. I've only been gone 20 minutes tops and that is walking very slowly and stopping to train the dog or sit on my prayer rock. I've felt, as you have read here lately, like this area is a gift to me and I should be content with the proximity of such beauty to enjoy.
But I've also been getting worse and worse with pre-surgery symptoms. Tonight, it's gotten a lot worse, so I will simply have to stop walking over there every day. Do I have the self-control? Nature becomes an addiction for me very easily. Quincy will be terribly disappointed. But I have to get back to feeling better physically, even though the walks made me feel wonderful mentally and emotionally. It's like I can't have both, at least not if it involves daily walks.
Last night (it's 4:30 am now and I've been up an hour) I woke up twice with so much pain below the waist including burning hips and calves. Old, familiar stuff. And I remember the words from my NY nurse: "If it causes a flare up, stop doing it." I hope I haven't done any permanent damage.
I also wanted to record here for my own purposes that I have started developing a stabbing pain under the right shoulder blade. It's not a sore muscle and it's been going on for maybe a month. I can feel it now as I write and the meds aren't touching the pain.
I think I might go back to making a whiry gig. The one I made late last year is working like a champ, the woodpecker pecking like crazy at the notch in the tree. We are getting some nice breezes and since my husband doctored my creation for balance and added some clear fin extensions on the propeller blades, it's an engineering marvel!!
Saturday, February 16, 2008
Give 'em an inch...
The old adage: Give 'em an inch, and they'll take a mile. We all know it. And we know it's true.
I thought of that today as I slowly, yet nimbly, walked the muddy deer trails across the road. My little dog is learning quickly about staying with me, that this is a time of companionship between us, and not just time for him to sniff all things natural! I walk very slow and have done so for some years now. Anyone walking with me, even my husband who has a broken hip and one-inch lift on his left shoe, feels his journey is stilted if I'm along. But this way, I'm not overtaxing my surgical area and not falling down.
And I see more!
(One time, while managing a ranch up north, we had one of our thoroughbreds brought back from the track to "lay up." He'd broken part of his leg while training and had spent some time at the vet's in stalled isolation. Finally, he was ready to come home and as I led him down to the box stall, filled with fluffy, clean straw with a bucket of fresh water hanging from the ring in the wall, I thought of how much more interesting this would be to him rather than the high walls, no windows, of the "solitary" he'd had for months at the vet's.
I led the big, dark bay into the stall, turned him around to remove his halter and stroked his neck a bit, saying, "You still have to stay in a stall for a long, long time, but at least here, with the top half of the door pinned open, you can stick your head out and see more."
Ever after that, I called him "Seymour.")
Back to my little hike today. I found a sheltered place of big, lichen-covered boulders with one sitting dry in the sun, just the right height for a prayer rock. I sat down, invited Quincy to join me, and said some prayers. Thanking God for the wonderful woods so close to my home, the sound of the wind in the pines and the gurgle of the snow-melt creek down below, it hit me.
"And you wanted more? You have a home you love, a grand place to commune with nature and God, a husband who couldn't be more loving and supportive, your son is happy with a new-found love, and you wanted more?"
Reflecting upon the things I'd conjured up that would be the result from the now-cancelled fusion, the rewards and the wellness and the return to more ability to get out and about, I had to laugh at what God was probably thinking right now!
"Give 'em an inch...."
Life is good here at the Gorge. Very good.
We went to the hardware store this morning and ended up in a visit with the young woman working there. A long-time local, Kari drew us a map of how the locals get up into the public lands and the mountains right above us. We'd been wanting to find the way to drive up there for all last summer and were only told, "There is no way. It's all gated up." And we found that to be true when we ventured forth to find our own way. Now, we have a golden map leading to the treasure of mountainous delights.
Life is very good.
I thought of that today as I slowly, yet nimbly, walked the muddy deer trails across the road. My little dog is learning quickly about staying with me, that this is a time of companionship between us, and not just time for him to sniff all things natural! I walk very slow and have done so for some years now. Anyone walking with me, even my husband who has a broken hip and one-inch lift on his left shoe, feels his journey is stilted if I'm along. But this way, I'm not overtaxing my surgical area and not falling down.
And I see more!
(One time, while managing a ranch up north, we had one of our thoroughbreds brought back from the track to "lay up." He'd broken part of his leg while training and had spent some time at the vet's in stalled isolation. Finally, he was ready to come home and as I led him down to the box stall, filled with fluffy, clean straw with a bucket of fresh water hanging from the ring in the wall, I thought of how much more interesting this would be to him rather than the high walls, no windows, of the "solitary" he'd had for months at the vet's.
I led the big, dark bay into the stall, turned him around to remove his halter and stroked his neck a bit, saying, "You still have to stay in a stall for a long, long time, but at least here, with the top half of the door pinned open, you can stick your head out and see more."
Ever after that, I called him "Seymour.")
Back to my little hike today. I found a sheltered place of big, lichen-covered boulders with one sitting dry in the sun, just the right height for a prayer rock. I sat down, invited Quincy to join me, and said some prayers. Thanking God for the wonderful woods so close to my home, the sound of the wind in the pines and the gurgle of the snow-melt creek down below, it hit me.
"And you wanted more? You have a home you love, a grand place to commune with nature and God, a husband who couldn't be more loving and supportive, your son is happy with a new-found love, and you wanted more?"
Reflecting upon the things I'd conjured up that would be the result from the now-cancelled fusion, the rewards and the wellness and the return to more ability to get out and about, I had to laugh at what God was probably thinking right now!
"Give 'em an inch...."
Life is good here at the Gorge. Very good.
We went to the hardware store this morning and ended up in a visit with the young woman working there. A long-time local, Kari drew us a map of how the locals get up into the public lands and the mountains right above us. We'd been wanting to find the way to drive up there for all last summer and were only told, "There is no way. It's all gated up." And we found that to be true when we ventured forth to find our own way. Now, we have a golden map leading to the treasure of mountainous delights.
Life is very good.
Wednesday, February 13, 2008
onward and upward
thanks, my dear friends and readers, for your comments and emails. I am doing much better.
Yesterday was so emotional for me. I realize now that I hinged everything that I want (my health, no pain, being able to travel someplace beyond 30 minutes away, being able to perhaps raise some chickens and goats, being able to hike, to drive, to lose weight, to play my banjo again) all on the surgery. I had been told way back in January of 07 that I needed the fusion. I'd been told to have six months of bisphosphinate treatment and then we'd have the fusion. I'd gone through the tethered cord surgery and heard that the fusion would come next and do me a lot of good. All of these things were true, but the timetable was not what it all sounded like to me. When you don't have the best communication, you tend to fill in the blanks yourself.
I psyched myself up for the surgery, as evidenced in these pages. I knew it would be hard to endure so, in order to move ahead with it, I had to mentally list, every day, all the good things that would come out of it, most of all, that my life would be safer (while in a car) if I would just suck it up and go through with the surgery. Like a coach screaming from the sidelines of a major game, my psyche was cheering me on, talking me into it, leading me toward victory.
I have no idea what my neurosurgeon wants for scores on my DEXA scans, but if he wants 100% of normal, my hematologist already told me that I would never get there. That is the reason I am very skeptical that I will ever have the surgery.
I do understand. I've heard that you can have one reading at a certain part of your spine, and have something much worse in another part. My lumbar spine was tested and it came out 88% of normal for someone my age (I mis-wrote before when I said that it was 92%). It is entirely reasonable to assume that my Cspine could be worse. Especially when my C1 never fused.
It was my job to talk myself into the surgery, but it's my surgeon's job to use common sense and to keep me from experiencing a failed fusion. That was always my fear anyway. I know people who have had their hardware removed, and one patient I've been told of, who went through the fusion, also experienced failure and will be in a halo the rest of her life.
After I wrote last night, I went to bed and slept really well. Waking up in my own bed in the morning is such a joy. Not sitting up for a couple of hours in the middle of each night is unusual. I felt very blessed this morning. And I felt (and still do feel) at peace with it all. And I feel happy that I'm not going for the fusion next month, and I'm not going to be in a halo. I have a good life, a wonderful husband and partner, a comfortable home. Much to be thankful for. God has a reason for all of this.
I put my hope too much in one man, my surgeon. When my hope should always be in my eternal Father. Of course, I was sure God was using the good doctor. And my praise was always for Him. But when we take away ALL that man can do for us, that is when God can work. Now that I have reached the end of my road in terms of treatment for my broken neck and dislocated skull, now is the time for God to perform miracles. He already has, so why should I ask for more?
I need to research online about the pamidronate treatment, as I've learned some new information on it recently and I'm not sure another course of it would be healthy for me. I need to talk to Dr. Fu and let him know what was said by my surgeon. However, I am imagining that what the surgeon asked for, 12-18 more months of bone therapy, will simply mean me continuing the Actonel I've been taking for over 4 years.
I need to cancel the gig in California. I was silly to get my hopes up over that. It all seems so silly now. To say yes to it and then write that it was a goal for me to work toward. That part of my life must be done.
Life is good, but it can also be so hard. To be in such pain and to be in danger and yet, to feel rejected and set adrift, it's emotionally a challenge to deal with. It's an adjustment. It's just one of those curve balls we get thrown in life and we try with grace and dignity to get past it. And to always always say, God has a plan. God has a plan.
Yesterday was so emotional for me. I realize now that I hinged everything that I want (my health, no pain, being able to travel someplace beyond 30 minutes away, being able to perhaps raise some chickens and goats, being able to hike, to drive, to lose weight, to play my banjo again) all on the surgery. I had been told way back in January of 07 that I needed the fusion. I'd been told to have six months of bisphosphinate treatment and then we'd have the fusion. I'd gone through the tethered cord surgery and heard that the fusion would come next and do me a lot of good. All of these things were true, but the timetable was not what it all sounded like to me. When you don't have the best communication, you tend to fill in the blanks yourself.
I psyched myself up for the surgery, as evidenced in these pages. I knew it would be hard to endure so, in order to move ahead with it, I had to mentally list, every day, all the good things that would come out of it, most of all, that my life would be safer (while in a car) if I would just suck it up and go through with the surgery. Like a coach screaming from the sidelines of a major game, my psyche was cheering me on, talking me into it, leading me toward victory.
I have no idea what my neurosurgeon wants for scores on my DEXA scans, but if he wants 100% of normal, my hematologist already told me that I would never get there. That is the reason I am very skeptical that I will ever have the surgery.
I do understand. I've heard that you can have one reading at a certain part of your spine, and have something much worse in another part. My lumbar spine was tested and it came out 88% of normal for someone my age (I mis-wrote before when I said that it was 92%). It is entirely reasonable to assume that my Cspine could be worse. Especially when my C1 never fused.
It was my job to talk myself into the surgery, but it's my surgeon's job to use common sense and to keep me from experiencing a failed fusion. That was always my fear anyway. I know people who have had their hardware removed, and one patient I've been told of, who went through the fusion, also experienced failure and will be in a halo the rest of her life.
After I wrote last night, I went to bed and slept really well. Waking up in my own bed in the morning is such a joy. Not sitting up for a couple of hours in the middle of each night is unusual. I felt very blessed this morning. And I felt (and still do feel) at peace with it all. And I feel happy that I'm not going for the fusion next month, and I'm not going to be in a halo. I have a good life, a wonderful husband and partner, a comfortable home. Much to be thankful for. God has a reason for all of this.
I put my hope too much in one man, my surgeon. When my hope should always be in my eternal Father. Of course, I was sure God was using the good doctor. And my praise was always for Him. But when we take away ALL that man can do for us, that is when God can work. Now that I have reached the end of my road in terms of treatment for my broken neck and dislocated skull, now is the time for God to perform miracles. He already has, so why should I ask for more?
I need to research online about the pamidronate treatment, as I've learned some new information on it recently and I'm not sure another course of it would be healthy for me. I need to talk to Dr. Fu and let him know what was said by my surgeon. However, I am imagining that what the surgeon asked for, 12-18 more months of bone therapy, will simply mean me continuing the Actonel I've been taking for over 4 years.
I need to cancel the gig in California. I was silly to get my hopes up over that. It all seems so silly now. To say yes to it and then write that it was a goal for me to work toward. That part of my life must be done.
Life is good, but it can also be so hard. To be in such pain and to be in danger and yet, to feel rejected and set adrift, it's emotionally a challenge to deal with. It's an adjustment. It's just one of those curve balls we get thrown in life and we try with grace and dignity to get past it. And to always always say, God has a plan. God has a plan.
Tuesday, February 12, 2008
Utterly crushed
Yesterday, the trip to my hematologist went well and he thought my bones were in "not bad" shape. He agreed there was improvement and said my bones right now are in the best shape they will be in, unless I were to undergo a very long course of additional treatment.
In my gut, I feel like my bones are strong. I couldn't wait to get home and write Dr. B, my neurosurgeon in NY, to tell him the good news and to get the go-ahead on scheduling the fusion surgery. Which is what I did.
Had a great night's sleep, waking up at a normal time in the morning with no pain and in my same bed. Then, all day, I just felt great, and when our son called to visit and we heard how happy he is, that was the proverbial icing on the cake.
Then, I checked my emails and there was one from Dr. B. He said that I will need to take 12-18 more months of bone enhancement therapy before another discussion about the fusion. I was shocked. And am still crushed.
I don't understand why I was allowed to go down this road of sure hope only to find it dashed. I wouldn't want a failed fusion, that's for sure...but I just felt so strongly that I would be okay, and that my neurosurgeon was on board with me having surgery if improvement was found in the bone scan.
This affects just about everything for me. I am grieving hard for the death of a vision of wellness. I feel hope is gone. Things are getting worse and worse for me and now I have to endure this for another year or year and a half? I can't drive at all, haven't in a year. I suffer each time we drive 35 miles from the house and spend the rest of the day in pain and deep suffering. I can't go to visit my mother in NH now, who is 83. I will have to cancel doing the gig down in CA in December. I can't go down there and meet my son's new girlfriend. I guess I can just stay home and take pictures of rooms.
I'm so dismayed, broken hearted, discouraged, disheartened. I feel beat down again and again. I do everything I'm required to do, I jump through all of the hoops and then I get stepped on like this.
I do appreciate my doctor being careful and conservative. And in the long run, I'll settle back into life such as it is. Unable to think without pain, pain with talking on the phone to family and friends,
up most nights with pain
unable to exercise and get fit again. I hate my body, the rolls of fat, but before now, I could look at it all and tell myself, soon, very soon, I'll get to hike again and I can work this off. Now, it sickens me to look in the mirror and what I see represents who I am now, and I just wanted so dang much to be myself again.
It's a dark day for me. Crying has created a lot of pain and the tears continue to flow. My hope feels so dashed. Now, I know better. If I go jumping through the hoops again, I am now jaded. I am not expecting that Dr. B will allow me the surgery even then, 18 months out in the future.
I just so wanted this weight of my skull, which is incredible, off of my nerves and all the things that cause me problems and pain with thinking...
I'm sorry...this is very, very rough on me.
In my gut, I feel like my bones are strong. I couldn't wait to get home and write Dr. B, my neurosurgeon in NY, to tell him the good news and to get the go-ahead on scheduling the fusion surgery. Which is what I did.
Had a great night's sleep, waking up at a normal time in the morning with no pain and in my same bed. Then, all day, I just felt great, and when our son called to visit and we heard how happy he is, that was the proverbial icing on the cake.
Then, I checked my emails and there was one from Dr. B. He said that I will need to take 12-18 more months of bone enhancement therapy before another discussion about the fusion. I was shocked. And am still crushed.
I don't understand why I was allowed to go down this road of sure hope only to find it dashed. I wouldn't want a failed fusion, that's for sure...but I just felt so strongly that I would be okay, and that my neurosurgeon was on board with me having surgery if improvement was found in the bone scan.
This affects just about everything for me. I am grieving hard for the death of a vision of wellness. I feel hope is gone. Things are getting worse and worse for me and now I have to endure this for another year or year and a half? I can't drive at all, haven't in a year. I suffer each time we drive 35 miles from the house and spend the rest of the day in pain and deep suffering. I can't go to visit my mother in NH now, who is 83. I will have to cancel doing the gig down in CA in December. I can't go down there and meet my son's new girlfriend. I guess I can just stay home and take pictures of rooms.
I'm so dismayed, broken hearted, discouraged, disheartened. I feel beat down again and again. I do everything I'm required to do, I jump through all of the hoops and then I get stepped on like this.
I do appreciate my doctor being careful and conservative. And in the long run, I'll settle back into life such as it is. Unable to think without pain, pain with talking on the phone to family and friends,
up most nights with pain
unable to exercise and get fit again. I hate my body, the rolls of fat, but before now, I could look at it all and tell myself, soon, very soon, I'll get to hike again and I can work this off. Now, it sickens me to look in the mirror and what I see represents who I am now, and I just wanted so dang much to be myself again.
It's a dark day for me. Crying has created a lot of pain and the tears continue to flow. My hope feels so dashed. Now, I know better. If I go jumping through the hoops again, I am now jaded. I am not expecting that Dr. B will allow me the surgery even then, 18 months out in the future.
I just so wanted this weight of my skull, which is incredible, off of my nerves and all the things that cause me problems and pain with thinking...
I'm sorry...this is very, very rough on me.
Sunday, February 10, 2008
More and better
I don't write as much here as I'd like. There's a lot of things I don't do as much as I'd like, like most folks, I suspect. But once I have done the everyday duties such as making the bed, doing the dishes, sweeping floors perhaps, my strength and energy are gone and I have little of "me" left to write...
or worse yet...
to think. It hurts to think lately. This is something that scares me a little, that my brain is so pained when called upon to retrieve, to explore, to create. To me, it is totally different than a headache (which is not to say that it hurts worse than a headache). The pain comes from the thinking part of my brain.
Sometimes I get some great flashes of brilliance, if I do say so myself. I have ideas that are "spot on" and which seem to be of unique origin. But then, the fewer the epiphanies, the lower the bar is set.
Last week, I accepted the invitation to perform at a large venue this coming December. It's a stage I know very well and I am confident that I can do this. In fact, just the action of accepting the gig and knowing that it is upcoming turned out to be something very positive in my life. That gig has become an icon of faith for me...faith that I will BE better in 11 months. I do believe it.
But right now, it's not so good. The suboccipital pain is worse than ever, a glaring reminder that I need surgery and I need it soon.
Tomorrow, I head to my hematologist/oncologist. There, I will finally hear his assessment of my latest DEXA scan and also the blood tests done a couple of weeks ago to check my protein levels and see how the pre-myeloma condition is doing. I feel very strongly that the assessment will be positive and Dr. Fu will give me the green light to schedule the fusion. I feel it in my gut. And God didn't bring me this far in the process of working with the TCI doctors in NY to have it all change now.
I took a bunch of photos of the inside of our home and emailed them to family and friends. I am reminded of my Dad in his later years. Debilitated by the effects of multiple strokes, this once vibrant and active man found his boundaries narrowed just like I am experiencing. He once sent me photos of highways, ports of call, fun destinations in his journeys around the US and, I remember thinking later on, when I received the snapshots of his kitchen, the bedrooms, the living room of his single-wide trailer in a quiet senior park how bitter-sweet and poignant it was that his horizons had been harnessed.
I used to send him photos of high mountain tops, my horse's ears in the foreground and a trail ahead which looked like it would lead into thin air....images, appearing as if they were aerial photos but in truth were snapped from the back of a good horse, of a turquoise lake far below, ringed by pine and fir. Shale slides and pack strings. Cattle loading up ramps into semi's. Sweaty horses and rocky outcroppings. Snow-covered trails and trackless passes.
Now, I circle through the house, capturing design and color. Fences have ringed my views and hedged my observations. Yet, beauty abounds through a window, upon a wall, within a heart that puts on a good show, but yearns and kicks against the traces. Thankful for what I have, grateful for the disabilities I don't, I still and ever will want my freedom back, if not to ride again (oh, how can that be?), then to drive again and to hike. To putt around a lake in our little fishing boat and toss a lazy line into placid waters. God is good. It will happen.
Such longings must be what is needed for the strength to agree for steel rods to be bolted into the back of the skull and down the spine. Strong yearnings and the will to be "more" must give me courage to again face the tongs on each side of my head, lifting me skyward with painful release.
There has to be a promise or hope of "better" before one would allow the four sharp pins of a halo brace to be fixed for months through the skin, into the bone of the cranium. Why else would one make this journey and submit to this torture?
For, yes, I do now know something of what torture feels like. I know that intensity of pain mixed with the uncertainty of the future. Pain that clouds the mind and renders me to the basest of beings. And I feared that I'd never go back, that I wasn't strong enough. But time eases the memory of the pain, just as it does for a mother having her second child. Common sense can rule the day and then hope opens the doorway just enough to show me a glimpse of an alpine meadow, mountain goats on the cliffs, trout leaping for flies and waterfalls cascading down through a canyon chute choked with downed trees and undergrowth.
or worse yet...
to think. It hurts to think lately. This is something that scares me a little, that my brain is so pained when called upon to retrieve, to explore, to create. To me, it is totally different than a headache (which is not to say that it hurts worse than a headache). The pain comes from the thinking part of my brain.
Sometimes I get some great flashes of brilliance, if I do say so myself. I have ideas that are "spot on" and which seem to be of unique origin. But then, the fewer the epiphanies, the lower the bar is set.
Last week, I accepted the invitation to perform at a large venue this coming December. It's a stage I know very well and I am confident that I can do this. In fact, just the action of accepting the gig and knowing that it is upcoming turned out to be something very positive in my life. That gig has become an icon of faith for me...faith that I will BE better in 11 months. I do believe it.
But right now, it's not so good. The suboccipital pain is worse than ever, a glaring reminder that I need surgery and I need it soon.
Tomorrow, I head to my hematologist/oncologist. There, I will finally hear his assessment of my latest DEXA scan and also the blood tests done a couple of weeks ago to check my protein levels and see how the pre-myeloma condition is doing. I feel very strongly that the assessment will be positive and Dr. Fu will give me the green light to schedule the fusion. I feel it in my gut. And God didn't bring me this far in the process of working with the TCI doctors in NY to have it all change now.
I took a bunch of photos of the inside of our home and emailed them to family and friends. I am reminded of my Dad in his later years. Debilitated by the effects of multiple strokes, this once vibrant and active man found his boundaries narrowed just like I am experiencing. He once sent me photos of highways, ports of call, fun destinations in his journeys around the US and, I remember thinking later on, when I received the snapshots of his kitchen, the bedrooms, the living room of his single-wide trailer in a quiet senior park how bitter-sweet and poignant it was that his horizons had been harnessed.
I used to send him photos of high mountain tops, my horse's ears in the foreground and a trail ahead which looked like it would lead into thin air....images, appearing as if they were aerial photos but in truth were snapped from the back of a good horse, of a turquoise lake far below, ringed by pine and fir. Shale slides and pack strings. Cattle loading up ramps into semi's. Sweaty horses and rocky outcroppings. Snow-covered trails and trackless passes.
Now, I circle through the house, capturing design and color. Fences have ringed my views and hedged my observations. Yet, beauty abounds through a window, upon a wall, within a heart that puts on a good show, but yearns and kicks against the traces. Thankful for what I have, grateful for the disabilities I don't, I still and ever will want my freedom back, if not to ride again (oh, how can that be?), then to drive again and to hike. To putt around a lake in our little fishing boat and toss a lazy line into placid waters. God is good. It will happen.
Such longings must be what is needed for the strength to agree for steel rods to be bolted into the back of the skull and down the spine. Strong yearnings and the will to be "more" must give me courage to again face the tongs on each side of my head, lifting me skyward with painful release.
There has to be a promise or hope of "better" before one would allow the four sharp pins of a halo brace to be fixed for months through the skin, into the bone of the cranium. Why else would one make this journey and submit to this torture?
For, yes, I do now know something of what torture feels like. I know that intensity of pain mixed with the uncertainty of the future. Pain that clouds the mind and renders me to the basest of beings. And I feared that I'd never go back, that I wasn't strong enough. But time eases the memory of the pain, just as it does for a mother having her second child. Common sense can rule the day and then hope opens the doorway just enough to show me a glimpse of an alpine meadow, mountain goats on the cliffs, trout leaping for flies and waterfalls cascading down through a canyon chute choked with downed trees and undergrowth.
Thursday, February 7, 2008
found treasures
"Heaven preserve my identity
on some forgotten shelf
And one day give it back to me
my long lost self."
excerpt from a poem by Elizabeth Mitchell
found at www.painonline.com
on some forgotten shelf
And one day give it back to me
my long lost self."
excerpt from a poem by Elizabeth Mitchell
found at www.painonline.com
Wednesday, February 6, 2008
I'm still here...and a bit about HOPE
I know folks check the blog regularly and I'm sorry I haven't written anything lately. Sigh...I'm here, I'm okay, just sort of uninspired and frankly, lacking strength and energy. But I do have plans to write some stories soon for you of past ranching experiences, including some photos. One such story I may start with is when a dead calf came back to life by my using prayer and CPR!
I read something this morning. Someone had written, "Pain is the sixth sense." Those five words hit home for me. Pain, anymore, has become as innate as my sense of touch, hearing, seeing. It's just always there. That unwelcome house guest who I need to realize is not going anywhere. I might as well write it in as a dependent on my tax forms!
But along with pain, and what makes pain bearable, is gratefulness. In fact, gratitude far outweighs the pain because I've been living with it much longer and it is a part of my inner being much deeper, much more entrenched than pain will ever be. I'm glad for that. I'm glad (though it is through no work of my own) that I can sit in the passenger seat of our truck, tucked snugly and restrictively into the Aspen collar, and gasp at the beauty of a mountain I've seen a couple hundred times already. I can't turn my head to follow the view, but the image stays with me, just like images of the past linger in my psyche.
And I know with confidence there will be another drive soon when I will revel in the nature outside my car window, just like I know there will be a future where I can once again be a part of that outside world which blessed all of my days.
Yesterday, while driving, we listened to Rush Limbaugh on the radio. He litanized about the differences between faith and hope, saying that hope means you do nothing, you just "hope" things will work out. Faith means you know things will work out and you act upon that faith.
Poor Rush. Though I often agree with his political leanings, he is dead wrong in his use of this often-misunderstood word. "Hope" means, by definition, "something you place your confidence in." The Bible tells us that "faith is the substance of things hoped for."
My vision of a healthy future is my hope. Which doesn't mean that it's something I wish will work out. My hope is a firm goal, a place that already exists based upon my faith and my confidence in the Lord. "All things work together for good to those who love God and are the called according to his purpose" (Romans 8:28).
I don't wish that I'll do fine, I move toward to that shining hope just up ahead over the hill.
I read something this morning. Someone had written, "Pain is the sixth sense." Those five words hit home for me. Pain, anymore, has become as innate as my sense of touch, hearing, seeing. It's just always there. That unwelcome house guest who I need to realize is not going anywhere. I might as well write it in as a dependent on my tax forms!
But along with pain, and what makes pain bearable, is gratefulness. In fact, gratitude far outweighs the pain because I've been living with it much longer and it is a part of my inner being much deeper, much more entrenched than pain will ever be. I'm glad for that. I'm glad (though it is through no work of my own) that I can sit in the passenger seat of our truck, tucked snugly and restrictively into the Aspen collar, and gasp at the beauty of a mountain I've seen a couple hundred times already. I can't turn my head to follow the view, but the image stays with me, just like images of the past linger in my psyche.
And I know with confidence there will be another drive soon when I will revel in the nature outside my car window, just like I know there will be a future where I can once again be a part of that outside world which blessed all of my days.
Yesterday, while driving, we listened to Rush Limbaugh on the radio. He litanized about the differences between faith and hope, saying that hope means you do nothing, you just "hope" things will work out. Faith means you know things will work out and you act upon that faith.
Poor Rush. Though I often agree with his political leanings, he is dead wrong in his use of this often-misunderstood word. "Hope" means, by definition, "something you place your confidence in." The Bible tells us that "faith is the substance of things hoped for."
My vision of a healthy future is my hope. Which doesn't mean that it's something I wish will work out. My hope is a firm goal, a place that already exists based upon my faith and my confidence in the Lord. "All things work together for good to those who love God and are the called according to his purpose" (Romans 8:28).
I don't wish that I'll do fine, I move toward to that shining hope just up ahead over the hill.
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