First, I'm excited because a reader left a comment and she also has suffered a Jefferson Fracture! I need to learn more about her, but I wonder if she has felt as alone as I have. I wonder if she thought she'd never meet another person who has gone through what she has.
Can't wait to get to know her better. Once of the reasons I titled my blog what I did was in hopes of drawing in others who have suffered with a JF. Of course, I'm not happy anyone else is dealing with this, but if they are, I hope I can help!
Swimming Up Pain's River. Well...
Lately (you've probably figured out) my symptoms are amping up. I didn't blog here for a few days because I just haven't been feeling very inspired. This is not to say that I don't have good moments in each day, because I do.
One of my problems is my memory. And I know we all can relate to that one, right? However, I forget some important things that I have stated and written over and over, I've studied it and I should be able to remember it...but pleasures override knowledge and such "files" get pushed to the back of the drawer to where they are not even present on the desk of my recall!
I'll come back to this in a moment.
Yesterday, my husband and I stained and watersealed (one great product) most of our front wheelchair ramp and railings. I sat on a green, PVC lawn chair with my bucket of product on a stool beside me so I wouldn't have to stoop down to dip in my brush, and lathered the stuff onto each railing. I thought I was being wise. I didn't feel any pain at all and thought I had "beat the system."
We took a long break for our wonderful lattes, then I went back out and taped my brush onto the end of a broom handle. There was just a bit of sealer left, so I poured it into the bucket and with the brush on the long pole, I sloshed it onto the floor of the ramp. Didn't get it all done before I ran out of stuff, but was so pleased with how well my improvised brush worked.
I came inside and was hit with the familiar and overwhelming sense that my neck could not hold my head up. I laid down on the guest bed with my dog, Quincy, and felt such pain in my brain.
By this, I do not mean a headache. It hurts in my frontal lobes very much and clouds my thinking, but not in a dumb-dumb way. Just painful to have a thought. I didn't want to fall asleep because I knew this horrid, swimmy feeling would be enhanced further by sleep.
I slept fitfully for 2 hours, dreaming of pain, waking up and thinking, "Oh, when I drag myself upright, it's going to hurt so badly and it will take an hour to feel back on this planet. I don't want to get up!" so I'd fall back to that dreaded sleep. Finally, I did force myself up and it was a struggle. I've been through this many times, I know the procedure. I also get this feeling when I wear the CTO vest in the truck.
So, what has memory got to do with this? I forgot to wear my Aspen Collar. And I forgot that Dr. B pointed to my odontoid and said that some of my issues come from that bone poking slightly into my brainstem. I just forgot it. I kept thinking to myself, "I wonder why I get this horrid
reaction to doing things. Must be the brain injury." Only many hours later did the proverbial light go on and I had an a-ha moment.
I posted about this symptom/experience on the ChiariConnectionInternational message board, just to see if anyone else there with craniocervical instability experiences this. No one has responded that they have. I am the only one there with CCI from trauma. Or at least the type of trauma I have had, the JF.
Burning pelvis woke me from my sleep early this morning, at 3:15. I got up and took a Norco at about 4 am, when I finally accepted that the pain was not going away on its own. That worked wonderfully, and I got up this morning feeling "like aces!" and have stayed that way til about an hour ago. I went 10 hours without a pain pill. Felt pretty good about that.
Just another day in Paradise, as they say. The breezes outside are tossing about rusty leaves at will. Looks like an opportune time to step outside and breathe deeply. Oh, the sun just broke through the clouds. I'm there!
Wednesday, October 10, 2007
Saturday, October 6, 2007
Up at 2 with intense pain
It's from the tethered cord, I know. I was in the midst of a very long, drawn-out dream when the burning pain in my calves woke me up. I tried to ignore it, but I know this means I need to get up to go to the bathroom. It does not hurt as bad as a spasm, or charley horse, but it dang well hurts, yet I don't want to get up because I know the walk to the bathroom will be painful and I'll have trouble with balancing my way there.
I also realize that I have leaked quite a bit of urine during the 3 hours I've been in bed. This is another TC symptom. It's not a letting go with the correct muscles and voiding, it's a leaking and sometimes it's worse than others. I knew I had to get up and change anyway, so I got everything done and now at the computer. Waiting for the Norco to kick in and the burn to stop. I pray.
I have considered whether I wanted to add the urine leakage in my notes here, do people really want to read this? And I do worry that some of my friends who are "well" might think I dwell too much on my health, that this blog is a sign of some obsession and is not healthy.
That may or may not be true, but I know that I am only telling half the story here. It would be an even longer, more boring litany if I recorded all that I deal with. My "sick" friends reading this know what I mean, don't you! I'm sorry you do. But it IS a blessing to have e-friends like Zoe, zipperhead, Scott and others who do relate to these words. And then my friends and family who have written and said they feel closer to me for having read my updates, those comments really add a little icing to my day.
Back to the TC. I cannot wait to get this process done and have a date for the surgery. As you can see, a release of my spinal cord at the base of my spine would have to give some wonderful relief. I'm praying so, and praying that the "hoops" and red tape up ahead will be Godly-expedited. I must remember to seek His counsel and to await His timing.
I also realize that I have leaked quite a bit of urine during the 3 hours I've been in bed. This is another TC symptom. It's not a letting go with the correct muscles and voiding, it's a leaking and sometimes it's worse than others. I knew I had to get up and change anyway, so I got everything done and now at the computer. Waiting for the Norco to kick in and the burn to stop. I pray.
I have considered whether I wanted to add the urine leakage in my notes here, do people really want to read this? And I do worry that some of my friends who are "well" might think I dwell too much on my health, that this blog is a sign of some obsession and is not healthy.
That may or may not be true, but I know that I am only telling half the story here. It would be an even longer, more boring litany if I recorded all that I deal with. My "sick" friends reading this know what I mean, don't you! I'm sorry you do. But it IS a blessing to have e-friends like Zoe, zipperhead, Scott and others who do relate to these words. And then my friends and family who have written and said they feel closer to me for having read my updates, those comments really add a little icing to my day.
Back to the TC. I cannot wait to get this process done and have a date for the surgery. As you can see, a release of my spinal cord at the base of my spine would have to give some wonderful relief. I'm praying so, and praying that the "hoops" and red tape up ahead will be Godly-expedited. I must remember to seek His counsel and to await His timing.
Friday, October 5, 2007
Peripheral vs Central Nerve pain
Peripheral pain is a bummer. It's the pain you experience with arthritis, diabetes, nerve impingement in your joints. It can be never-ending and totally debilitating. I'm not taking anything away from it as I write this.
But I want to record the difference between peripheral nerve pain and pain that eminates from the spinal cord: central nerve pain. As you've heard me say before, I don't really have the words for it, but my lack of vocabulary doesn't mean that it doesn't exist.
EMGs and SSEPs (nerve conduction studies) test for peripheral neuropathy. I had these tests done this summer. Tiny electrodes are placed upon your skin ... or through your skin to test muscle reactions and how fast the impulses given the nerves travel to the brain. They hurt. The electrodes do. And they surprise you when they happen.
I had read in my support group about how bad EMGs were going to be. I was prepared for something really bad. The jolts of whatever charge they use make your muscles quiver or spasm.
But the odd thing was, even though I bled all over the paper sheet covering the table in the neurologist's examination room (she'd previously assured me there would be no bleeding), the pain was just not that bad. It was completely bearable. It was felt like stings or burns, needle pokes or little shocks like touching an electric fence. I told the doctor that none of it really bothered me too much. I believe that was because I had central nerve pain with which to compare the two sensations.
My situation is not as bad as many sufferers I've read about, but truthfully, I experience central pain every day, so those little jolts of electricity or needle stabs were not about to bother me much.
I only thought to record this tonight because, as I was sitting tonight watching TV, I got a sudden, lancinating pain in my right, smallest toes. It straightened my leg out and I felt that direct access to the brain. As if I were having dental work done and the dentist hit a nerve in my toes. It only lasted four seconds, and I can breeze through them now because I know they only last a very short time. But the experience reminded me of the difference between that intense sensation and the EMGs/SSEPs testing.
Yes, those lancinating pains are perhaps just like the dentist hitting a nerve in one of your teeth and we ALL know what that feels like.
But for me, the lancinators are not the worst thing I deal with. The worst thing is the long, deep, black tunnel that my brain can start down, which is always connected with sleep. Going to sleep or coming out of it.
Maybe because I walked across the road to take a picture today, maybe that was the reason I had painful sleep this afternoon. Prior to falling asleep, again I had the heavy, painful feeling that my neck could not hold up my head.
I laid down and had, once again, the sensation that something is wrong with my breathing. Not my lungs though. I can fill them deeply and fine. But perhaps my diaphragm? I can't find any peers who also have these sensations. It is a scary thing, but I fell right to sleep anyway.
And I woke up in that painful, black, brain place. The good thing was that I was lying flat. I forced myself up from bed (it had only been a 45 minute nap) and started supper and that really helped to clear things up. I wish I had better words to describe these events. It is my lack, not our vocabulary's.
But I want to record the difference between peripheral nerve pain and pain that eminates from the spinal cord: central nerve pain. As you've heard me say before, I don't really have the words for it, but my lack of vocabulary doesn't mean that it doesn't exist.
EMGs and SSEPs (nerve conduction studies) test for peripheral neuropathy. I had these tests done this summer. Tiny electrodes are placed upon your skin ... or through your skin to test muscle reactions and how fast the impulses given the nerves travel to the brain. They hurt. The electrodes do. And they surprise you when they happen.
I had read in my support group about how bad EMGs were going to be. I was prepared for something really bad. The jolts of whatever charge they use make your muscles quiver or spasm.
But the odd thing was, even though I bled all over the paper sheet covering the table in the neurologist's examination room (she'd previously assured me there would be no bleeding), the pain was just not that bad. It was completely bearable. It was felt like stings or burns, needle pokes or little shocks like touching an electric fence. I told the doctor that none of it really bothered me too much. I believe that was because I had central nerve pain with which to compare the two sensations.
My situation is not as bad as many sufferers I've read about, but truthfully, I experience central pain every day, so those little jolts of electricity or needle stabs were not about to bother me much.
I only thought to record this tonight because, as I was sitting tonight watching TV, I got a sudden, lancinating pain in my right, smallest toes. It straightened my leg out and I felt that direct access to the brain. As if I were having dental work done and the dentist hit a nerve in my toes. It only lasted four seconds, and I can breeze through them now because I know they only last a very short time. But the experience reminded me of the difference between that intense sensation and the EMGs/SSEPs testing.
Yes, those lancinating pains are perhaps just like the dentist hitting a nerve in one of your teeth and we ALL know what that feels like.
But for me, the lancinators are not the worst thing I deal with. The worst thing is the long, deep, black tunnel that my brain can start down, which is always connected with sleep. Going to sleep or coming out of it.
Maybe because I walked across the road to take a picture today, maybe that was the reason I had painful sleep this afternoon. Prior to falling asleep, again I had the heavy, painful feeling that my neck could not hold up my head.
I laid down and had, once again, the sensation that something is wrong with my breathing. Not my lungs though. I can fill them deeply and fine. But perhaps my diaphragm? I can't find any peers who also have these sensations. It is a scary thing, but I fell right to sleep anyway.
And I woke up in that painful, black, brain place. The good thing was that I was lying flat. I forced myself up from bed (it had only been a 45 minute nap) and started supper and that really helped to clear things up. I wish I had better words to describe these events. It is my lack, not our vocabulary's.
Exquisite Reading
I am finishing up a book that I have been swept up in the last few days. I found it on the Loan-out shelf at the cancer center, a bookcase wedged between two recliners where patients come to fill up on toxic fuels which will, God willing, kill off the bad cells and leave some good ones to hang around and carry on life.
The book is called, "Tapestry: The Journey of Laurel Lee." It's a spare book, in a way, because Laurel Lee could describe a situation, event, emotion or thought in one or two sentences instead of several paragraphs. She was the queen of simile and metaphor! Her life was one of those incredible journeys that needed to be shared with the world. I feel like Laurel, who passed into the arms of Jesus on August 10, 2004, has taken up residence somehow within some deep place I own.
I never knew Laurel, but now, I miss her.
Weakness and Glory
I've given up the search for superlatives and adjectives for this glorious Fall weather. I'm just reveling in it as much as my health will allow.
Wanting to snap a photo of our home from across the road, thereby showing the flaming hillside behind the house, I stepped through the dried grasses and trod along damp deer paths. It's not far. I only walked perhaps 150 feet. I snapped the photos.
Then I looked wistfully behind me, back toward the bewitching creek bottom that I had explored briefly last week. I thought to also take a photo of those Fall colors and maybe the pine-needle-covered part of the trail that is guarded by Ponderosas.
I walked another 100 feet to the point where the trail sloped downward slightly. I took two shots, but I knew the one I wanted was where the path entered the mysterious darker woods. I looked and saw the exact place I wanted to record for my personal history. It was only about 150 more feet, down a slightly sloping trail. And I thought, "No, that would not be good. I would pay with some bad symptoms if I tried that."
So, I looked away, back toward our house, but the Siren Song called me back, and like Lot's wife, I looked again down the path, just toward the object of my affection, the piney woods. My thigh muscles ached and my bones all flushed with weakness and though my body sort of tilted in that direction, good sense won out and I turned back up the hill toward home.
I'm down to walking only 250 ft away from my house...and back...and that trip will put me under.
Wanting to snap a photo of our home from across the road, thereby showing the flaming hillside behind the house, I stepped through the dried grasses and trod along damp deer paths. It's not far. I only walked perhaps 150 feet. I snapped the photos.
Then I looked wistfully behind me, back toward the bewitching creek bottom that I had explored briefly last week. I thought to also take a photo of those Fall colors and maybe the pine-needle-covered part of the trail that is guarded by Ponderosas.
I walked another 100 feet to the point where the trail sloped downward slightly. I took two shots, but I knew the one I wanted was where the path entered the mysterious darker woods. I looked and saw the exact place I wanted to record for my personal history. It was only about 150 more feet, down a slightly sloping trail. And I thought, "No, that would not be good. I would pay with some bad symptoms if I tried that."
So, I looked away, back toward our house, but the Siren Song called me back, and like Lot's wife, I looked again down the path, just toward the object of my affection, the piney woods. My thigh muscles ached and my bones all flushed with weakness and though my body sort of tilted in that direction, good sense won out and I turned back up the hill toward home.
I'm down to walking only 250 ft away from my house...and back...and that trip will put me under.
Thursday, October 4, 2007
Loverly!
Loverly day today, Eliza Doolittle!
"All I want is a room somewhere
Far away from the cold night air
With one enormous chair...
Oh, wouldn't that be loverly?
Lots of chocolate for me to eat
Lots of coal making lots of 'eat
Warm face, warm 'ands, warm feet...
Oh, wouldn't that be loverly?
Oh, so loverly to be absolutely bloomin' still!
I would never budge 'til Spring...
Crept over-me windowsill!
Someone's 'and restin' on my knee
Warm and tender as 'e can be...
Who'll take good care of me...Oh!
Wouldn't that .... be loverly!"
****************
If the lyrics above are a bit off, well, I typed them from memory. I used to love musicals and show tunes as a kid. Across the road from the tiny house my Dad built room by room was a great expanse of woods that years before had been logged. Running and skipping through the forest, I would sing to the top of my lungs, arms spread wide like Julie Andrews in a mountain field in the Alps, springing up to a stump to finish the song in a resounding crescendo. I knew lyrics to songs like "I'm a Yankee Doodle Dandy," "Shall We Dance?" (I performed a particularly memorable "stump" rendition of that one, if I do say so myself!), and "We Got Trouble Right Here in River City!" What do kids today do without musicals to provide dance and lyrics in which to express their exuberance for nature and life?
What a loverly day today. We had a dusting of snow on the mountains behind us last night. Mt Hood is now blanketed in a pristine eyelet cover of white that sparkles even more in its setting against the cobalt skies. The oaks here in the foothills are ruddy, yellow and red and the air akin to an effervescent elixir. The scene simply could not be more addictive to gaze upon, and my love for this area we've been led to for our home is multiplied a thousand-fold. There is absolutely nothing about our town, our house, our property, our neighbors and our townsfolks that we do not like. Well, there IS one neighbor who could clean up his yard a bit more, but who are we to tell him?
It is interesting to me that we "fit" here so well. These are our kind of folks and I realise more than ever that we really were fish out of familiar waters in California. People here drive old, beat-up trucks, something rarely seen in that southern eco-friendly state we left. And we love it! They dress in flannel shirts and old, torn jeans (which were not ripped on purpose!) and dusty hats or oily ball-caps. Hair is worn naturally and make-up sparingly. These are our kind of people, just good ol' country folks who work hard for a living and help each other. Though this area sports a year 'round jacket of breathtaking scenery, it has very little for tourists to flock to if they are not into sightseeing, natural recreation... and nothing else.
This leads me to another thought. I've been blessed to have lived in some of the West's most scenic areas: Aspen, Jackson Hole, coast of California and other places of awe-inspiring vistas.
All of those places depend upon tourism and, in fact, have lost their rustic character due to that catering attitude. However, would those visitors who claim to come for those natural offerings still spend time there if there were no "shops?" Where we live now, our little town of 3500 has no "shops" of chi-chi souvenirs or furnishings.
So, which came first, the tourist or the shops?
I hope our community never changes. If my prayers are answered, this county will always be grass-roots, down-home, warm and comfy and inviting as a broken-in, overstuffed chair next to a flickering hearth.
Oh, did I forget to mention that the celery-crisp air is permeated with the pungent smoke from all of our neighbors' woodfires?
Take a deep breath......ah!
Loverly!
"All I want is a room somewhere
Far away from the cold night air
With one enormous chair...
Oh, wouldn't that be loverly?
Lots of chocolate for me to eat
Lots of coal making lots of 'eat
Warm face, warm 'ands, warm feet...
Oh, wouldn't that be loverly?
Oh, so loverly to be absolutely bloomin' still!
I would never budge 'til Spring...
Crept over-me windowsill!
Someone's 'and restin' on my knee
Warm and tender as 'e can be...
Who'll take good care of me...Oh!
Wouldn't that .... be loverly!"
****************
If the lyrics above are a bit off, well, I typed them from memory. I used to love musicals and show tunes as a kid. Across the road from the tiny house my Dad built room by room was a great expanse of woods that years before had been logged. Running and skipping through the forest, I would sing to the top of my lungs, arms spread wide like Julie Andrews in a mountain field in the Alps, springing up to a stump to finish the song in a resounding crescendo. I knew lyrics to songs like "I'm a Yankee Doodle Dandy," "Shall We Dance?" (I performed a particularly memorable "stump" rendition of that one, if I do say so myself!), and "We Got Trouble Right Here in River City!" What do kids today do without musicals to provide dance and lyrics in which to express their exuberance for nature and life?
What a loverly day today. We had a dusting of snow on the mountains behind us last night. Mt Hood is now blanketed in a pristine eyelet cover of white that sparkles even more in its setting against the cobalt skies. The oaks here in the foothills are ruddy, yellow and red and the air akin to an effervescent elixir. The scene simply could not be more addictive to gaze upon, and my love for this area we've been led to for our home is multiplied a thousand-fold. There is absolutely nothing about our town, our house, our property, our neighbors and our townsfolks that we do not like. Well, there IS one neighbor who could clean up his yard a bit more, but who are we to tell him?
It is interesting to me that we "fit" here so well. These are our kind of folks and I realise more than ever that we really were fish out of familiar waters in California. People here drive old, beat-up trucks, something rarely seen in that southern eco-friendly state we left. And we love it! They dress in flannel shirts and old, torn jeans (which were not ripped on purpose!) and dusty hats or oily ball-caps. Hair is worn naturally and make-up sparingly. These are our kind of people, just good ol' country folks who work hard for a living and help each other. Though this area sports a year 'round jacket of breathtaking scenery, it has very little for tourists to flock to if they are not into sightseeing, natural recreation... and nothing else.
This leads me to another thought. I've been blessed to have lived in some of the West's most scenic areas: Aspen, Jackson Hole, coast of California and other places of awe-inspiring vistas.
All of those places depend upon tourism and, in fact, have lost their rustic character due to that catering attitude. However, would those visitors who claim to come for those natural offerings still spend time there if there were no "shops?" Where we live now, our little town of 3500 has no "shops" of chi-chi souvenirs or furnishings.
So, which came first, the tourist or the shops?
I hope our community never changes. If my prayers are answered, this county will always be grass-roots, down-home, warm and comfy and inviting as a broken-in, overstuffed chair next to a flickering hearth.
Oh, did I forget to mention that the celery-crisp air is permeated with the pungent smoke from all of our neighbors' woodfires?
Take a deep breath......ah!
Loverly!
Wednesday, October 3, 2007
Post concussion stuff or what?
As I remember from my studies online, the symptoms you have at 18 months post-concussion, they will be there permanently from then on. All the healing and getting better you are going to do must be done within those first 18 months. After that, you are stuck with 'em.
When you land hard enough on the top of your head that you break a bone into four pieces, the doctors feel you have suffered a pretty bad concussion. After my horse accident, I went through six months of speech therapy. The damage done was mild by many comparisons and I am truly blessed to be doing so well today and I know that. But, and there always is a "but," there are many challenges that linger.
One is emotionalism. I am overly emotional. I find it hard to pray because when I sincerely focus in on something or someone, I start to cry and it's something I can't stop. That is why I am up now, at 11:30 pm, writing this. Praying for good things for my son, I was struck with an over-abundance of emotion. And when I cry, I set off a bunch of neurological jabberwocky. Legs burn and tingle, hands tingle and go numb, the scalp crawls, my right deltoid suddenly starts sparking and like fingernails on a chalkboard, these things pierce into the deepest, darkest and least patient part of my brain.
There, right there, is an analogy for Central Pain: it's like fingernails on a chalkboard. Yeah, that's it. Anyone agree?
When you land hard enough on the top of your head that you break a bone into four pieces, the doctors feel you have suffered a pretty bad concussion. After my horse accident, I went through six months of speech therapy. The damage done was mild by many comparisons and I am truly blessed to be doing so well today and I know that. But, and there always is a "but," there are many challenges that linger.
One is emotionalism. I am overly emotional. I find it hard to pray because when I sincerely focus in on something or someone, I start to cry and it's something I can't stop. That is why I am up now, at 11:30 pm, writing this. Praying for good things for my son, I was struck with an over-abundance of emotion. And when I cry, I set off a bunch of neurological jabberwocky. Legs burn and tingle, hands tingle and go numb, the scalp crawls, my right deltoid suddenly starts sparking and like fingernails on a chalkboard, these things pierce into the deepest, darkest and least patient part of my brain.
There, right there, is an analogy for Central Pain: it's like fingernails on a chalkboard. Yeah, that's it. Anyone agree?
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