I am taking IV infusions of pamidronate once a month. This is one of the bone enhancement drugs they give to patients with cancer. When I went to TCI in NY, my surgeon was concerned about the fact that I have osteoporosis. This could negatively affect the craniocervical fusion that I need. Therefore, he stated that he wanted me to have six months of some kind of bone enhancement therapy.
I now have a wonderful hematologist/oncologist. He is one of the many reasons that moving to our new home was obviously the thing God wanted us to do. He's very caring and I trust him completely. We discussed the three choices for therapy. One, Zometa, is very popular right now because it only takes an hour to infuse. The other, Forteo, we decided against because it is contraindicated if you have jaw pain, which I do. Zometa was out because the manufacturer states not to take it if you have bone disease. So, we settled on the pamidronate which is something of the old standby med, I'm told. It takes about 2.5 hours to infuse.
My husband drives me to the beautiful cancer center that features an amazing waterfall. It must be fifty feet long, and a couple of feet high with lots of water recirculating over it, and faux petroglyphs carved into the faces of some of the rocks to mimic a Native fishing area nearby, for which the center is named.
The people here are extraordinary. The staff, every one of them, is kind and compassionate. I am so impressed with the level of care offered here. I sit in one of the comfy, blue leather recliners and visit with the nurses or perhaps other patients while the drip above pours into my veins the hope for a successful head/neck fusion. It causes me to feel sleepy and I usually take a nap. If I push the recliner all the way back into a more reclining position, I can taste the medication, which is bearable but unpleasant.
A lovely and polite elderly woman comes by and offers snacks after awhile. Little plates of crackers and cheese or cookies, if you prefer. And juice, water or coffee. One time, a massage therapist came and gave me a foot massage and we had a friendly visit.
If I have a question, I fax it to the office there, and within a day's time, my oncologist himself will call me and always open with, "What can I do for you?"
This center should be a model for all medical clinics everywhere. The doctors are wise and respecting of their patients, involving them in their own choices for care, showing CTs on the computer to them. Even though I am going there to get poked for an IV and because of my thin blood and strong heart, there's always a bit of "blood letting," the time is pleasantly spent. All it takes for doctors and medical staff to have a winning relationship with their patients is to honor and respect them, and to care. What a concept!
This was my third infusion. I will have 3 more. If, for some reason, my skull/neck fusion is delayed for a month or more past the sixth pamidronate infusion, I will ask my doctor if it would make sense for me to have more treatments. I trust him, and I want the best chance possible for a successful craniocervical fusion.
Friday, September 28, 2007
Thursday, September 27, 2007
News about my surgery
Today, I finally found out that yes, Dr. B at TCI in NY wants me to have the detethering of my spinal cord. He looked at my urodynamics test results and still wants to proceed. So, now I know.
The day before the surgery, I'll have the ICT (invasive cervical traction) which will help the wonderful surgeons there to see how much fusion will benefit me. But the fusion will be down the road in about 4 months. I have to finish up the six months treatment of pamidronate that I'm receiving to enhance the strength of my bones (due to my osteoporosis) first. And when I have the Tethered Cord Surgery (TCS), I need to have a 1-3 month wait before going back for the fusion. I'm suspecting the fusion will be about next Feb. or March.
I'll look for some good websites describing TCS and post them in my favorite links column to the right.
I'm not writing well tonight. I'm in the dead zone, I think. After I got the news of the surgery, I decided to take the dog and go walk across the road again. I really did not go far, but lifting my weak legs up over logs and rocks in the trail, and climbing the slight hill was all it took. I wasn't huffing and puffing, but it felt like my chest was burning. I stopped to sit on a rock and rest several times. I was having a rugged time getting home and boy, my neurological stuff flared up with a vengeance. My hands are painful, my feet hurt, my neck, and I'm so painfully weak all over. I can't seem to think straight. I guess I get the point: I can't go where I went the other day very often. I'll have to give myself a lot more time between walks. And maybe I can't go that far again, I'm not sure. It wasn't far by any stretch of the imagination, but I've learned "far" is a relative term.
The view of our house coming back up the hill though was so pretty. The oaks are turning on the hill behind the house and we are so blessed to be here.
Tomorrow I go to the cancer center to get the IV infusion of pamidronate.
The day before the surgery, I'll have the ICT (invasive cervical traction) which will help the wonderful surgeons there to see how much fusion will benefit me. But the fusion will be down the road in about 4 months. I have to finish up the six months treatment of pamidronate that I'm receiving to enhance the strength of my bones (due to my osteoporosis) first. And when I have the Tethered Cord Surgery (TCS), I need to have a 1-3 month wait before going back for the fusion. I'm suspecting the fusion will be about next Feb. or March.
I'll look for some good websites describing TCS and post them in my favorite links column to the right.
I'm not writing well tonight. I'm in the dead zone, I think. After I got the news of the surgery, I decided to take the dog and go walk across the road again. I really did not go far, but lifting my weak legs up over logs and rocks in the trail, and climbing the slight hill was all it took. I wasn't huffing and puffing, but it felt like my chest was burning. I stopped to sit on a rock and rest several times. I was having a rugged time getting home and boy, my neurological stuff flared up with a vengeance. My hands are painful, my feet hurt, my neck, and I'm so painfully weak all over. I can't seem to think straight. I guess I get the point: I can't go where I went the other day very often. I'll have to give myself a lot more time between walks. And maybe I can't go that far again, I'm not sure. It wasn't far by any stretch of the imagination, but I've learned "far" is a relative term.
The view of our house coming back up the hill though was so pretty. The oaks are turning on the hill behind the house and we are so blessed to be here.
Tomorrow I go to the cancer center to get the IV infusion of pamidronate.
Wednesday, September 26, 2007
Two Visions
This morning, in a quiet time, I saw a vision of myself performing again.
This has been something I've been unable to picture. I've been willing to let it all go forever.
Performing, bringing up that life-force in order to entertain, brings too much physical pain.
And putting myself "out there," trying to make people laugh...or cry...it seemed too hard.
Even though I once traveled about and spoke to large audiences with great confidence, it became just another thing I don't do anymore.
I haven't felt sad about that really because I know my brain and my body need the rest and I have faith that if I'm to return to the stage, it will happen. And if not, so be it. I have learned well to go with the flow.
Yet, this morning, out of nowhere, I saw myself after my surgery, and able to perform in a more, low-key yet meaningful way. Perhaps a reinvention of my former stage self. A parallel to the reinvention of my life.
Later, I happily sat out on our little front deck just soaking in the view. Lips closed and gazing toward the mountains in the north and just accepting thought to take me where it wanted to. The lawn spread out in front of me, and then, I saw ME, riding Shadow across the lawn.
Usually, my dreams are of me astride the horse, looking between those sweet brown ears down the trail. But today, the fleeting vision was of me and what I'd be doing, and what I'd look like, if I could ride again, if I lived here with Shadow.
Does it mean that I will ride again someday just like the first vision perhaps means I will once again perform? I didn't get that sense of it. It was more like a juxtaposition, the old me...the future me...both good. Both acceptable. Both a blessing.
Going with the flow.
This has been something I've been unable to picture. I've been willing to let it all go forever.
Performing, bringing up that life-force in order to entertain, brings too much physical pain.
And putting myself "out there," trying to make people laugh...or cry...it seemed too hard.
Even though I once traveled about and spoke to large audiences with great confidence, it became just another thing I don't do anymore.
I haven't felt sad about that really because I know my brain and my body need the rest and I have faith that if I'm to return to the stage, it will happen. And if not, so be it. I have learned well to go with the flow.
Yet, this morning, out of nowhere, I saw myself after my surgery, and able to perform in a more, low-key yet meaningful way. Perhaps a reinvention of my former stage self. A parallel to the reinvention of my life.
Later, I happily sat out on our little front deck just soaking in the view. Lips closed and gazing toward the mountains in the north and just accepting thought to take me where it wanted to. The lawn spread out in front of me, and then, I saw ME, riding Shadow across the lawn.
Usually, my dreams are of me astride the horse, looking between those sweet brown ears down the trail. But today, the fleeting vision was of me and what I'd be doing, and what I'd look like, if I could ride again, if I lived here with Shadow.
Does it mean that I will ride again someday just like the first vision perhaps means I will once again perform? I didn't get that sense of it. It was more like a juxtaposition, the old me...the future me...both good. Both acceptable. Both a blessing.
Going with the flow.
As Time Goes By
So, more time has gone by since I last reported the results of my little walk yesterday. I noticed throughout this day another impact. Normally, I need to urinate about 10x a day, and 2-3 times a night. This is due to the trauma done to my spineToday, I am sure I have had to go about 15x. I imagine this is the irritation done to my tethered cord from the walk. I can look at all symptoms today and from my experience of the last few years, I can say that they are the result of over-doing it yesterday.
Right now, I have very painful, weak legs, especially in my thighs. But it's not a muscle or bone pain, it is neurological.
This is something to be learned about central nerve pain resulting from spinal cord damage. If you do something that is going to flare up symptoms, you won't feel the results immediately. It will take 24 hours to 2 full days before the symptoms will kick in.
If you hike a mountain and you are out of shape, that night, you will feel the pain in your muscles. And it will last a day or two. With central nerve pain, you might not feel the results of your "joy ride" right away. You might wait even two days before the flare kicks in. Long enough for you to have forgotten about your misdemeanor and you find yourself wondering "Why am I feeling so rotten?"
Today, I did a little chore that required me to hyperextend my neck (chin upwards). This will always be my downfall because of my bifocals and trying to see through the bottom part of my lenses. I should not have even attempted to do what I did today (a household chore), which also really overtaxed my deltoids...and I knew better, but when I want something done, I know I am going to do it, if I can.
I expect the flare up of neurological symptoms to arrive in a couple of days, maybe sooner. Til then, I have the payback I'm experiencing from my little "hike" to deal with.
Needless to say, I did not venture even to the front gate today. That walk of perhaps 100 feet seemed like the Iditarod to me!
Right now, I have very painful, weak legs, especially in my thighs. But it's not a muscle or bone pain, it is neurological.
This is something to be learned about central nerve pain resulting from spinal cord damage. If you do something that is going to flare up symptoms, you won't feel the results immediately. It will take 24 hours to 2 full days before the symptoms will kick in.
If you hike a mountain and you are out of shape, that night, you will feel the pain in your muscles. And it will last a day or two. With central nerve pain, you might not feel the results of your "joy ride" right away. You might wait even two days before the flare kicks in. Long enough for you to have forgotten about your misdemeanor and you find yourself wondering "Why am I feeling so rotten?"
Today, I did a little chore that required me to hyperextend my neck (chin upwards). This will always be my downfall because of my bifocals and trying to see through the bottom part of my lenses. I should not have even attempted to do what I did today (a household chore), which also really overtaxed my deltoids...and I knew better, but when I want something done, I know I am going to do it, if I can.
I expect the flare up of neurological symptoms to arrive in a couple of days, maybe sooner. Til then, I have the payback I'm experiencing from my little "hike" to deal with.
Needless to say, I did not venture even to the front gate today. That walk of perhaps 100 feet seemed like the Iditarod to me!
Ah, the price...
This morning, I'm suffering from that little walk yesterday. Experienced a bad "charlie horse" in my right calf this morning upon awakening. My lower back is painful and numb, as is my...ahem...bottom. My heels of both feet are burning. And oh, the pressure on the top of my head. Next time, I'll remember to wear my Aspen collar! I'm weaker by far, painfully weak.
Was the walk worth it?
What do YOU think?
Was the walk worth it?
What do YOU think?
Tuesday, September 25, 2007
Almost too sacred to write about...
Well...
Out of nowhere, today I heard the still, small voice telling me to go for a walk.
This would sound mundane, except I have not been able to really go for a walk in a very long time. My feet are too painful and my legs too weak.
Yet, walking and being in the woods is something my spirit has always craved. Even when I was riding every day, I felt a need to be walking, too. To be even closer to the ground, the earth.
Thus, this summer I have felt doubly-deprived: no riding. No walking or hiking.
For six months, we've lived in a new home and across the road is a forest that I have only gazed upon. I have reflected, briefly, from time to time about how odd that I am right across from this wonderful bunch of woods and rocks, and I can't even go explore over there because I just don't have the "oomph" to do it! Thoughts like that cause wistfulness. Usually, I just don't allow myself to nurture them.
Then, today, I get this old familiar calling. The woods across the road beckoning me, sinful sirens who will only bring pain. And my lifelong instinct won out. I put on my shoes, I put the leash on my dog and I went. It had been so long, it seems, since I've gone for a walk that a sense of the extraordinary was not lost on me.
We picked our way carefully through the dry, low bushes and volcanic rubble, through an old garbage dump that promised future explorations, and happened upon a well-trod deer trail. I've dogged many a deer trail in my day, in probably seven western states. My feet felt strange, though, as always. Neuropathy refused to give sway to pleasures that filled my soul. My soles hurt and they felt numb (I always wonder how something can both be numb and painful at the same time). But there was no way that my spirit was going to give in to something I am so used to. I knew I'd pay the price, but for this moment, it will be worth it.
I had no idea what might lay behind the first few trees that I'd been savoring from my picture window view in my house all these months. What an awe-inspiring surprise! Volcanic outcroppings and cliffs. High-traffic deer trails. No sign of contemporary mankind. Thick stands of tall, red-barked Ponderosa pine. Needle-covered forest floor. Snowberry bushes turning golden with the newly arrived season. All seeming to say: "What took you so long?"
And a dry creek-bed with dehydrated mosses and algae, tumbled rocks and waterlines which foretell of running water next springtime. In the creek bottom, I couldn't hear anything but happy frogs. And wind whistling in the pinetops. No highway noise. Nothing human-made. I sat down in the middle of the trail where a dissecting tree-root made a handy step/resting spot. My dog cuddled up close. And I simply couldn't believe that this treasure is right across the road from my house! I can be here in five minutes. It is, in every way, exactly the right gift for me. Everything about our new home is perfect. My mantra throughout my last few years has been: "God has a plan." And this is such a cool plan for me!
What this means to me? Dear reader, if you found across the road from you, a big stash of money and it was yours for the keeping, then you could imagine how I feel about this incredible find. To think I've been drinking in the views of those roadside trees and not allowing myself to even dream of walking over there, only to find that it has everything I could ever want. More acres to explore, if I can do it. At the least, a five-minute walk with my dog will take me to peace, solitude, the earth and the nature of my very soul. I am blessed. And it is almost too sacred to share.
Out of nowhere, today I heard the still, small voice telling me to go for a walk.
This would sound mundane, except I have not been able to really go for a walk in a very long time. My feet are too painful and my legs too weak.
Yet, walking and being in the woods is something my spirit has always craved. Even when I was riding every day, I felt a need to be walking, too. To be even closer to the ground, the earth.
Thus, this summer I have felt doubly-deprived: no riding. No walking or hiking.
For six months, we've lived in a new home and across the road is a forest that I have only gazed upon. I have reflected, briefly, from time to time about how odd that I am right across from this wonderful bunch of woods and rocks, and I can't even go explore over there because I just don't have the "oomph" to do it! Thoughts like that cause wistfulness. Usually, I just don't allow myself to nurture them.
Then, today, I get this old familiar calling. The woods across the road beckoning me, sinful sirens who will only bring pain. And my lifelong instinct won out. I put on my shoes, I put the leash on my dog and I went. It had been so long, it seems, since I've gone for a walk that a sense of the extraordinary was not lost on me.
We picked our way carefully through the dry, low bushes and volcanic rubble, through an old garbage dump that promised future explorations, and happened upon a well-trod deer trail. I've dogged many a deer trail in my day, in probably seven western states. My feet felt strange, though, as always. Neuropathy refused to give sway to pleasures that filled my soul. My soles hurt and they felt numb (I always wonder how something can both be numb and painful at the same time). But there was no way that my spirit was going to give in to something I am so used to. I knew I'd pay the price, but for this moment, it will be worth it.
I had no idea what might lay behind the first few trees that I'd been savoring from my picture window view in my house all these months. What an awe-inspiring surprise! Volcanic outcroppings and cliffs. High-traffic deer trails. No sign of contemporary mankind. Thick stands of tall, red-barked Ponderosa pine. Needle-covered forest floor. Snowberry bushes turning golden with the newly arrived season. All seeming to say: "What took you so long?"
And a dry creek-bed with dehydrated mosses and algae, tumbled rocks and waterlines which foretell of running water next springtime. In the creek bottom, I couldn't hear anything but happy frogs. And wind whistling in the pinetops. No highway noise. Nothing human-made. I sat down in the middle of the trail where a dissecting tree-root made a handy step/resting spot. My dog cuddled up close. And I simply couldn't believe that this treasure is right across the road from my house! I can be here in five minutes. It is, in every way, exactly the right gift for me. Everything about our new home is perfect. My mantra throughout my last few years has been: "God has a plan." And this is such a cool plan for me!
What this means to me? Dear reader, if you found across the road from you, a big stash of money and it was yours for the keeping, then you could imagine how I feel about this incredible find. To think I've been drinking in the views of those roadside trees and not allowing myself to even dream of walking over there, only to find that it has everything I could ever want. More acres to explore, if I can do it. At the least, a five-minute walk with my dog will take me to peace, solitude, the earth and the nature of my very soul. I am blessed. And it is almost too sacred to share.
My ongoing symptoms as of today!
I used to make symptom lists for my doctors every time I visited them. I'm not sure how much good it did, but I felt like I was doing my best to get their attention, and helping them not have to rely upon their notes. I would recommend everyone to do this, especially with new doctors.
I just posted my symptoms as a response to a post at my support group. I thought, since I did that, that I'd paste them here:
******************
My craniocervical instability symptoms are:
* Top of head pain and feeling that my head is pressing hard on my neck.
*Daily my head feels too heavy and I have to lie down.
*Occipital pain that can radiate over ears to eyes.
*Slight balance problems
*Cognitive dysfunction, but could be due to MTBI (mild traumatic brain injury).
*Vision disturbances.
*Tremors in fingers and jaw
*Nausea
*Very diffuse weakness
*Pain and change of sensation in hands
*Sleep changes: I have abnormally high events of "unexplained arousals" (wake up for no reason) during sleep, meaning not too much deep, REM sleep.
*An intense feeling of being "Neurologically off"...I've not yet found the words to describe it
*Pain suboccipitally when biting down/chewing/yawning/sneezing/coughing/laughing/crying.
*Breathing difficulties: forced shallow breathing and a sensation like my diaphragm is sticking and when that happens, I can't breathe.
*sore throat
*swallowing difficulties in that food and pills can take a really long time to "go down."
*Lancinating pains (Get-your-attention stabs of pain that go directly, immediately to the brain, happens on feet and in arms, mostly).
*If I work or something using my arms, I get very bad neuropathic itch.
*occasional myoclonus, muscle jerking
* Loss of knowing where my feet and hands are positioned
* L'Hermittes if I am in a certain position and cough or sneeze.
I have other symptoms, that "could" be due to tethered cord, or the trauma to my upper C spine (?)...I read online once that if you are injured high enough in your Cspine, you can have lower extremity symptoms. So, I'm not sure.
*Painfully weak legs
*Foot pain
*Change of sensation in feet
*Burning in hips/thighs/calves/feet at night upon need to urinate
*Frequent urination (at least 10x per day, about 3 x per night)
I was told that I do have pressure on brainstem from odontoid (part of the C2), due to my skull rotating backwards due to instability post injury.The back of my skull rests on the posterior of my C1.
These are the main ones that I can think of right now.
I just posted my symptoms as a response to a post at my support group. I thought, since I did that, that I'd paste them here:
******************
My craniocervical instability symptoms are:
* Top of head pain and feeling that my head is pressing hard on my neck.
*Daily my head feels too heavy and I have to lie down.
*Occipital pain that can radiate over ears to eyes.
*Slight balance problems
*Cognitive dysfunction, but could be due to MTBI (mild traumatic brain injury).
*Vision disturbances.
*Tremors in fingers and jaw
*Nausea
*Very diffuse weakness
*Pain and change of sensation in hands
*Sleep changes: I have abnormally high events of "unexplained arousals" (wake up for no reason) during sleep, meaning not too much deep, REM sleep.
*An intense feeling of being "Neurologically off"...I've not yet found the words to describe it
*Pain suboccipitally when biting down/chewing/yawning/sneezing/coughing/laughing/crying.
*Breathing difficulties: forced shallow breathing and a sensation like my diaphragm is sticking and when that happens, I can't breathe.
*sore throat
*swallowing difficulties in that food and pills can take a really long time to "go down."
*Lancinating pains (Get-your-attention stabs of pain that go directly, immediately to the brain, happens on feet and in arms, mostly).
*If I work or something using my arms, I get very bad neuropathic itch.
*occasional myoclonus, muscle jerking
* Loss of knowing where my feet and hands are positioned
* L'Hermittes if I am in a certain position and cough or sneeze.
I have other symptoms, that "could" be due to tethered cord, or the trauma to my upper C spine (?)...I read online once that if you are injured high enough in your Cspine, you can have lower extremity symptoms. So, I'm not sure.
*Painfully weak legs
*Foot pain
*Change of sensation in feet
*Burning in hips/thighs/calves/feet at night upon need to urinate
*Frequent urination (at least 10x per day, about 3 x per night)
I was told that I do have pressure on brainstem from odontoid (part of the C2), due to my skull rotating backwards due to instability post injury.The back of my skull rests on the posterior of my C1.
These are the main ones that I can think of right now.
Monday, September 24, 2007
My Brain
I am feeling like this this morning:
pain, mild in my head
a feeling of pressure across the top of my head
Sensation that my head is pressing heavily down onto my Cspine.
burning pain occipitally
I can't think my way through things.
My email is not working and I need to contact the service provider, yet I can't deal with talking to anyone right now.
I can't "wrap my brain" around things.
I've not taken any pain medication, so that is not it.
I am just struggling to think! This has been coming on for a few days. I deal with this every day, but find good, clear lucid moments at times.
I'm like a tiger, caged up, and the door is open for a bit each day where I can take tentative steps outside and look around, but I get pulled back into the cage later on.
My brain used to work like a well-oiled machine, I could access parts of it, bring to the front the things I want to work on, and then store away for later on. But now and since my injury, I hit blank walls and I can't battle past it. The more I might fight against it, I've learned it just gets worse.
I've seen horses like this, worked with them. Shadow was one. YOu couldn't fight him, you could only out-stubborn him. But I can't out-stubborn my brain. I simply have to wait til all the cells and neurons and axons and molecules and nerve endings and tissue and all the planets are aligned just right before I can proceed.
I don't tell my brain what to do. IT tells me what to do and when. And there is no argument. Case closed. There is no pushing my way on through. I've tried that, but that wall comes up, and it is formidable.
It's not a Puissance wall, where a good enough horse can jump it. It goes all the way up into the sky and as far to the left and right as the eye can see and it is even buried down deep into the dirt, that wall is. As you can see, right now, all I can do is write about the Wall. And I can't really envision the Wall unless I'm right up against it.
I'm not spinning my wheels fighting against the wall. I am not banging my fists in frustration against the wall. I am not crying. I am just stalled out....like treading water getting nowhere but not that much activity. Just a strong, brain burn that is humming, humming, idling against the wall.
I can only write of the Wall when I am in the idling position against it. Because when my brain starts to soften that wall, allowing me to move through it a little bit, then I can't remember what it was like. That is why I am writing stream of consciousness here, to try to record what this Wall feels like. Burning...idling.....no backing up or climbing up or turning left or right...just that burning idling feeling.
Waiting.
pain, mild in my head
a feeling of pressure across the top of my head
Sensation that my head is pressing heavily down onto my Cspine.
burning pain occipitally
I can't think my way through things.
My email is not working and I need to contact the service provider, yet I can't deal with talking to anyone right now.
I can't "wrap my brain" around things.
I've not taken any pain medication, so that is not it.
I am just struggling to think! This has been coming on for a few days. I deal with this every day, but find good, clear lucid moments at times.
I'm like a tiger, caged up, and the door is open for a bit each day where I can take tentative steps outside and look around, but I get pulled back into the cage later on.
My brain used to work like a well-oiled machine, I could access parts of it, bring to the front the things I want to work on, and then store away for later on. But now and since my injury, I hit blank walls and I can't battle past it. The more I might fight against it, I've learned it just gets worse.
I've seen horses like this, worked with them. Shadow was one. YOu couldn't fight him, you could only out-stubborn him. But I can't out-stubborn my brain. I simply have to wait til all the cells and neurons and axons and molecules and nerve endings and tissue and all the planets are aligned just right before I can proceed.
I don't tell my brain what to do. IT tells me what to do and when. And there is no argument. Case closed. There is no pushing my way on through. I've tried that, but that wall comes up, and it is formidable.
It's not a Puissance wall, where a good enough horse can jump it. It goes all the way up into the sky and as far to the left and right as the eye can see and it is even buried down deep into the dirt, that wall is. As you can see, right now, all I can do is write about the Wall. And I can't really envision the Wall unless I'm right up against it.
I'm not spinning my wheels fighting against the wall. I am not banging my fists in frustration against the wall. I am not crying. I am just stalled out....like treading water getting nowhere but not that much activity. Just a strong, brain burn that is humming, humming, idling against the wall.
I can only write of the Wall when I am in the idling position against it. Because when my brain starts to soften that wall, allowing me to move through it a little bit, then I can't remember what it was like. That is why I am writing stream of consciousness here, to try to record what this Wall feels like. Burning...idling.....no backing up or climbing up or turning left or right...just that burning idling feeling.
Waiting.
Sunday, September 23, 2007
What IS Arnold Chiari Malformation?
I promised in an earlier post to explain about ACM, a condition I do not have. As I explained, I have so many friends online who are suffering with this and related conditions, AND my surgeries will be happening at The Chiari Institute in New York. Unless someone you know has ACM, you probably don't know what it is. I know I certainly did not. And for my friends who
have this and are battling to get the word out, I will paste here an article I wrote for ChiariConnectionInternational members. I felt this article could be used to send to their hometown papers and hopefully generate enough interest that a story might be requested.
Here is my article:
LITTLE-KNOWN SPINAL DISORDER SHOWS FEW OUTWARD SIGNS
Vicki is a 28 year old mother of two rambunctious children both under the age of six. She appears healthy as she enters through the doors of the gym where she works as a personal trainer. Pony-tail swinging and accompanied by the muffled sounds of her cross-trainer shoes upon the sidewalk, she greets her clients with a smile.
Yet, Vicki is holding on by a thin thread, for she is fighting a number of debilitating health issues which belie her appearance of "normal." In spite of a broken spinal fusion for which she is seeking surgical help, she is also battling a rare condition known as syringomyelia which developed after a motor vehicle accident 2 years ago.
Once healthy, strong and outgoing, Josh earned his living as a hardworking power lineman. An onset of debilitating symptoms and subsequent diagnosis of syringomyelia now keeps him mostly homebound, advocating for improved working conditions for those dealing with high-intensity electrical wire atop dizzying power-poles.
Vince, a renowned radio-controlled airplane competitor, now stays home to watch his children and suffers in pain after an auto accident injured his spine and left him battling syringomyelia (SM) instead of downdrafts and demanding landings. His wife works full time to pay the bills.
Keesha is also a mother of young children. In her late 20's, she has earned three college degrees and is a qualified teacher. She should be continuing her teaching career, working in her Arizona yard or riding on amusement park rides on the weekends with her young family. Instead, she is filling out forms for Social Security Disability Insurance, traveling to hearings and doctor appointments while she faces the challenges of knock-you-to-your-knees headaches, weakness and pain throughout her body. Keesha suffers from not only syringomyelia, but also a related condition called Arnold Chiari Malformation (ACM), or simply "Chiari."
Once these patients receive the news that they suffer from one or both of these incurable conditions, their lives will never be the same. They may appear "normal" to the world around them, yet they deal with neurological pain and diffuse weakness which prohibits them from living any kind of normal lifestyle.
Chiari was discovered in 1898 by Professor Hans Chiari during his postmortem studies in Germany. Long before the advent of MRIs and radiological imaging, Dr. Chiari found that a part of the cerebellum (which lies at the back of the head and is believed to control movement) can herniate into cone-shaped "tonsils" which then fill up the hole located at the junction between the bottom of the skull and the top of the cervical spine. When the tonsils dip far enough down into this hole, the ebb and flow of cerebral spinal (CSF) fluid is obstructed.
One hundred years later, in 1998, Dr. Thomas Milhorat, along with his colleagues, released a study where he redefined ACM as being not just the length of herniation of the cerebellar tonsils. It was discovered that the ectopic tonsils are pushed into the spinal canal because the posterior fossa (the compartment which houses the cerebellum) is too small. Dr. Milhorat founded The Chiari Institute.
Betsy, an artist in Pennsylvania, knows well the symptoms caused by obstructed CSF flow and the subsequent pressure upon vital nerves. She has lived with Chiari for 30 years and endured 12 surgeries. Her symptoms run the gamut from simple "pins and needles-type" tingling, numbness, impaired cognitive function, inexorable headaches which radiate out from the base of the skull toward the eyes and ears and then radiate down through the neck to the shoulders, arms and hands. Tremors are typical, along with bladder and bowel dysfunction, sleep apnea syndrome and a diffuse, painful weakness that defies description.
Many people are often misdiagnosed before finding out they have Chiari, a condition which afflicts women 3 to 1 over men. They are told they have multiple sclerosis, fibromyalgia, restless leg syndrome or chronic fatigue syndrome. Or, worse, in the case of women, some have been told their symptoms are attributable to PMS. Men and women alike are often chided that it is all "in their heads" and are given prescriptions for antidepressants or psychological evaluations.
Patients begin to believe those doctors respected within their community and thus question their own sanity or work ethic. Until one day, a bright, young neurologist; an older, compassionate GP; or even a licensed homeopathic-practitioner recognizes the symptoms and urges the sufferer to have an MRI done of their brain.
The good news is that with the correct knowledge and expertise in Chiari, it is easy to diagnose the condition with a simple look at the patient's films. The bad news is there simply is no cure. Surgery can be performed but the best that can be promised is a slowing of the progression of symptoms.
Neurosurgeons enter the back of the head at the base of the skull and remove bone and tissue to increase an opening for spinal fluid flow. Some surgeons will also cauterize the cerebellar tonsils in order to encourage the hole-plugging tissue to back away from the vital opening at the top of the spine.
Linked to Chiari Malformation is another spinal cord condition known as syringomyelia (SM), a disease where a fluid-filled cyst or syrinx occurs within the spinal canal. CSF moves up and down through the space around the cord with each heartbeat. The fluid inside the syrinx can compress the cord out against the adjacent bony rings of the spinal vertebrae, thus compressing and damaging the nerve-laden interior of the cord . Some surgeons elect to divert any fluid from reaching the syrinx through use of a shunt inserted into the cord.
75% of syringes are found to be caused by the obstructed CSF flow from a Chiari condition. At other times, a syrinx is brought on by head or spinal trauma such as whiplash incurred during a motor vehicle accident, and no Chiari is present.
"While research into the causes of the severe, nerve-damage-related pain is progressing, the actual mechanisms involved are still poorly understood. Current medications are not effective in many cases or only partially successful in dampening down the pain and other symptoms of Chiari and syringomyelia," says Sarah Bates of Paradise, CA, herself a CM sufferer and advocate for her peers through her role as board member of the Wishes and Rainbows organization, which "educates, encourages and assists" those with CM and/or SM.
To Betsy, Vicki, Vince and others like them, the hardest things to face are often outside the doctors' offices. Families think they look fine and healthy so they must be lazy or obsessed unnecessarily with their health. Employers cannot understand why a previously outstanding employee begins to decline and cannot keep up an adequate standard of work. Insurance case-managers and disability examiners cannot comprehend the pain and weakness inherent to syringomyelia and Chiari because, though these conditions are not really rare, they are not widely-known or understood. The average doctor may not encounter a single case in his career.
The results are the misdiagnoses and judgment that these sufferers must deal with in conjunction with their symptoms.
A person can be born with Chiari Malformation and lead a full life never knowing their condition exists. Such a person may only become symptomatic when trauma is experienced: an accident, fall, difficult childbirth or even a lengthy bout of sneezing.
"Education and awareness are key in finding treatment and a cure for those afflicted," Sarah Bates states.
To read more about Chari Malformation, go to www.chiariconnectioninternational.com.
To learn from those who suffer, go to CCI's message board and support group:
http://health.groups.yahoo.com/group/ChiariConnectionInternational/messages
Visit this site for more information and a chance to help Chiarians, especially children at Christmas time in their "Santa Smiles" project.
www.wishesandrainsbows.org.
have this and are battling to get the word out, I will paste here an article I wrote for ChiariConnectionInternational members. I felt this article could be used to send to their hometown papers and hopefully generate enough interest that a story might be requested.
Here is my article:
LITTLE-KNOWN SPINAL DISORDER SHOWS FEW OUTWARD SIGNS
Vicki is a 28 year old mother of two rambunctious children both under the age of six. She appears healthy as she enters through the doors of the gym where she works as a personal trainer. Pony-tail swinging and accompanied by the muffled sounds of her cross-trainer shoes upon the sidewalk, she greets her clients with a smile.
Yet, Vicki is holding on by a thin thread, for she is fighting a number of debilitating health issues which belie her appearance of "normal." In spite of a broken spinal fusion for which she is seeking surgical help, she is also battling a rare condition known as syringomyelia which developed after a motor vehicle accident 2 years ago.
Once healthy, strong and outgoing, Josh earned his living as a hardworking power lineman. An onset of debilitating symptoms and subsequent diagnosis of syringomyelia now keeps him mostly homebound, advocating for improved working conditions for those dealing with high-intensity electrical wire atop dizzying power-poles.
Vince, a renowned radio-controlled airplane competitor, now stays home to watch his children and suffers in pain after an auto accident injured his spine and left him battling syringomyelia (SM) instead of downdrafts and demanding landings. His wife works full time to pay the bills.
Keesha is also a mother of young children. In her late 20's, she has earned three college degrees and is a qualified teacher. She should be continuing her teaching career, working in her Arizona yard or riding on amusement park rides on the weekends with her young family. Instead, she is filling out forms for Social Security Disability Insurance, traveling to hearings and doctor appointments while she faces the challenges of knock-you-to-your-knees headaches, weakness and pain throughout her body. Keesha suffers from not only syringomyelia, but also a related condition called Arnold Chiari Malformation (ACM), or simply "Chiari."
Once these patients receive the news that they suffer from one or both of these incurable conditions, their lives will never be the same. They may appear "normal" to the world around them, yet they deal with neurological pain and diffuse weakness which prohibits them from living any kind of normal lifestyle.
Chiari was discovered in 1898 by Professor Hans Chiari during his postmortem studies in Germany. Long before the advent of MRIs and radiological imaging, Dr. Chiari found that a part of the cerebellum (which lies at the back of the head and is believed to control movement) can herniate into cone-shaped "tonsils" which then fill up the hole located at the junction between the bottom of the skull and the top of the cervical spine. When the tonsils dip far enough down into this hole, the ebb and flow of cerebral spinal (CSF) fluid is obstructed.
One hundred years later, in 1998, Dr. Thomas Milhorat, along with his colleagues, released a study where he redefined ACM as being not just the length of herniation of the cerebellar tonsils. It was discovered that the ectopic tonsils are pushed into the spinal canal because the posterior fossa (the compartment which houses the cerebellum) is too small. Dr. Milhorat founded The Chiari Institute.
Betsy, an artist in Pennsylvania, knows well the symptoms caused by obstructed CSF flow and the subsequent pressure upon vital nerves. She has lived with Chiari for 30 years and endured 12 surgeries. Her symptoms run the gamut from simple "pins and needles-type" tingling, numbness, impaired cognitive function, inexorable headaches which radiate out from the base of the skull toward the eyes and ears and then radiate down through the neck to the shoulders, arms and hands. Tremors are typical, along with bladder and bowel dysfunction, sleep apnea syndrome and a diffuse, painful weakness that defies description.
Many people are often misdiagnosed before finding out they have Chiari, a condition which afflicts women 3 to 1 over men. They are told they have multiple sclerosis, fibromyalgia, restless leg syndrome or chronic fatigue syndrome. Or, worse, in the case of women, some have been told their symptoms are attributable to PMS. Men and women alike are often chided that it is all "in their heads" and are given prescriptions for antidepressants or psychological evaluations.
Patients begin to believe those doctors respected within their community and thus question their own sanity or work ethic. Until one day, a bright, young neurologist; an older, compassionate GP; or even a licensed homeopathic-practitioner recognizes the symptoms and urges the sufferer to have an MRI done of their brain.
The good news is that with the correct knowledge and expertise in Chiari, it is easy to diagnose the condition with a simple look at the patient's films. The bad news is there simply is no cure. Surgery can be performed but the best that can be promised is a slowing of the progression of symptoms.
Neurosurgeons enter the back of the head at the base of the skull and remove bone and tissue to increase an opening for spinal fluid flow. Some surgeons will also cauterize the cerebellar tonsils in order to encourage the hole-plugging tissue to back away from the vital opening at the top of the spine.
Linked to Chiari Malformation is another spinal cord condition known as syringomyelia (SM), a disease where a fluid-filled cyst or syrinx occurs within the spinal canal. CSF moves up and down through the space around the cord with each heartbeat. The fluid inside the syrinx can compress the cord out against the adjacent bony rings of the spinal vertebrae, thus compressing and damaging the nerve-laden interior of the cord . Some surgeons elect to divert any fluid from reaching the syrinx through use of a shunt inserted into the cord.
75% of syringes are found to be caused by the obstructed CSF flow from a Chiari condition. At other times, a syrinx is brought on by head or spinal trauma such as whiplash incurred during a motor vehicle accident, and no Chiari is present.
"While research into the causes of the severe, nerve-damage-related pain is progressing, the actual mechanisms involved are still poorly understood. Current medications are not effective in many cases or only partially successful in dampening down the pain and other symptoms of Chiari and syringomyelia," says Sarah Bates of Paradise, CA, herself a CM sufferer and advocate for her peers through her role as board member of the Wishes and Rainbows organization, which "educates, encourages and assists" those with CM and/or SM.
To Betsy, Vicki, Vince and others like them, the hardest things to face are often outside the doctors' offices. Families think they look fine and healthy so they must be lazy or obsessed unnecessarily with their health. Employers cannot understand why a previously outstanding employee begins to decline and cannot keep up an adequate standard of work. Insurance case-managers and disability examiners cannot comprehend the pain and weakness inherent to syringomyelia and Chiari because, though these conditions are not really rare, they are not widely-known or understood. The average doctor may not encounter a single case in his career.
The results are the misdiagnoses and judgment that these sufferers must deal with in conjunction with their symptoms.
A person can be born with Chiari Malformation and lead a full life never knowing their condition exists. Such a person may only become symptomatic when trauma is experienced: an accident, fall, difficult childbirth or even a lengthy bout of sneezing.
"Education and awareness are key in finding treatment and a cure for those afflicted," Sarah Bates states.
To read more about Chari Malformation, go to www.chiariconnectioninternational.com.
To learn from those who suffer, go to CCI's message board and support group:
http://health.groups.yahoo.com/group/ChiariConnectionInternational/messages
Visit this site for more information and a chance to help Chiarians, especially children at Christmas time in their "Santa Smiles" project.
www.wishesandrainsbows.org.
Making special moments`
There are so many things I can't do anymore and my husband is in a lot of the same situation.
We used to ride horseback and hike, ride bicycles, go to church and to other events, travel to see things. Now, just walking from one end of the house to the other tires me out and I have to work up the steam sometimes to walk the few feet out to the compost bin!
The way I'm dealing with it is to make the things I can do special. With that in mind, this morning, I baked with local apples an apple cobbler that ended up with the heavenly taste of pure ambrosia. With two bowls of this manna topped with "lite" whipped topping and then two cups of home-made lattes, we head out to our favorite "chat room," our chairs on the lawn. Our dog trots excitedly alongside, he's even come to know the word "latte" and knows that smell means a special treat for him, as well. At the very least, he'll get to wash the dishes.
Fall is here and the oaks are subtly changing hue. Night-time temperatures are just above freezing and there is always a crisp breeze in the air. I love the freshness of this time of year, and the imaginations of snows to come. Our local carousers, the deer, must have partied in our small backyard last night, for I found my pole-bean vines (beans and leaves) all nibbled up as high as their outstretched necks could reach. Yet, they left me enough to pick another large bowl-full today, which I easily blanched and froze in quart-sized ziplocks. This winter, we will enjoy tastes of this first summer in our new home by way of pickles, salsa, frozen green beans and lots of berries.
Making a common moment uncommon. It's an easy way to love life, which I do.
We used to ride horseback and hike, ride bicycles, go to church and to other events, travel to see things. Now, just walking from one end of the house to the other tires me out and I have to work up the steam sometimes to walk the few feet out to the compost bin!
The way I'm dealing with it is to make the things I can do special. With that in mind, this morning, I baked with local apples an apple cobbler that ended up with the heavenly taste of pure ambrosia. With two bowls of this manna topped with "lite" whipped topping and then two cups of home-made lattes, we head out to our favorite "chat room," our chairs on the lawn. Our dog trots excitedly alongside, he's even come to know the word "latte" and knows that smell means a special treat for him, as well. At the very least, he'll get to wash the dishes.
Fall is here and the oaks are subtly changing hue. Night-time temperatures are just above freezing and there is always a crisp breeze in the air. I love the freshness of this time of year, and the imaginations of snows to come. Our local carousers, the deer, must have partied in our small backyard last night, for I found my pole-bean vines (beans and leaves) all nibbled up as high as their outstretched necks could reach. Yet, they left me enough to pick another large bowl-full today, which I easily blanched and froze in quart-sized ziplocks. This winter, we will enjoy tastes of this first summer in our new home by way of pickles, salsa, frozen green beans and lots of berries.
Making a common moment uncommon. It's an easy way to love life, which I do.
Saturday, September 22, 2007
Flashback 2: Ambulance ride to first hospital
This is the second installment looking back at the day of my injury, April 09, 2004. You can read the first one if you scroll back through older posts, it is titled: "So how did this all happen?"
*******************
After I went into the office and called 911, I returned to the tiny, very old, bow-back chair in our kitchen, first stopping at the freezer for a bag of frozen peas. Every injury I've ever had, I've put ice on it and had great success. Just like with horses. If I had a trauma to a horse's leg, I'd run cold water on it from a hose, several times a day.
I sat down with the peas (and remember, I had to remain bent over at the waist and allow my head to hang down because I could not hold the weight of my head up at all) and attempted to put the bag on the back of my neck, but that was over-the-top painful and I knew that wasn't going to happen. I just sat there with my head hanging down about to my knees, praying and worrying about what had happened to me. My husband came back in the house from putting the horse back in the barn. I can only imagine how worried he was. He expected to drive me to the emergency room but I told him that there really wasn't a chance that I could walk out to the pickup and climb up into it and then endure the ride to the hospital. I let him him know I'd called the ambulance, and then I remember sitting there saying out loud, "Why don't they get here? Why don't they get here?" It seemed SO long before he told me that they had arrived.
Several responders came into the kitchen and asked me some questions. I remember they asked me if I had been knocked out, and I'd answered no. It was a month later that the neurosurgeon told me that he felt I had lost consciousness, and since then, several other specialists have questioned me and all have come to the same conclusion: that I was knocked out. Since I was alone when it happened, we had to reconstruct events and what I did remember. One neurologist asked me if I remembered seeing stars or crashing through the fence, but I do not. My last memory is the horse stopping in front of the jump and my body tilting forward over the pommel of the saddle.
I've also read that the victim is not a reliable witness of whether loss of consciousness (LOC) occurred. Even so, "No LOC" appears on the paramedic's report.
The medics put a rigid neck collar on me, and then lifted up the tiny, antique chair with me in it, leaning it backwards to lower me down to the floor onto the backboard. I remember worrying whether that rickety chair would break with my 148 pounds in it, but thankfully, it held up. Once my back was on the backboard, they slipped out the chair and brought my legs down to a flat position.
They buckled me in and kept taking my blood pressure. Like all good medics everywhere, they asked me questions that would help them understand how lucid I was: the date of my birthday and what was the President's wife's name (Laura Bush).
Each step jolted even more the pain in my neck as the men carried me out to the open doors of the ambulance. Before they closed the door, I told the medics to ask my husband to bring my glasses. My sunglasses were still back at the jump where I fell, mangled from being caught between my face and the hard ground. I didn't have any glasses on when I led Jedi and walked back to the house, and still hadn't thought to put them on while in the house waiting for the ambulance to arrive. I am very near-sighted.
There was only a short quarter-mile of dirt road before we would hit pavement, but those 1300 feet were rutted by "washboard" and the pain was excrutiating. At that moment, I asked the medic who was attending to me if he was a Christian. He said something that was blatantly honest yet strange to tell someone in my position. He did not believe in God. I asked him to pray for me anyway.
Whenever the ambulance would come to a stop sign, the pain again was agonizing and I know I yowled in response. The driver would call back to me that he was trying to get there as quickly as he could. Finally, they backed into the ER and unloaded this broken horsetrainer, strapped to a hard and more-than-uncomfortable backboard. I am guessing now that they did not put me into a softer, cushioned gurney because of the unstable neck.
I was taken into an examining room and there was my husband and our 22 year old son. My husband told me later that he called our boy at work and told him to come to the hospital. I remember asking my son to please pray for me, and he said he would. I was in so much pain, particularly the very back, middle part of my skull. It hurt from being on the solid board, I thought (in retrospect, I am sure the back of my head would have hurt if it'd been nestled in a feather pillow!). A nurse came in and wiped off my face from the "wreck" and gave me a wet sponge on a stick to suck on. Someone took off my riding boots (naturally, I was still in my riding breeches and tall, black boots and spurs) and gave them to my husband.
I had a large scrape on the back of my left arm that had bled, but by this time was scabbed over. No one paid much attention to that, understandably. It was decided that I needed a CT scan. I had never had a CT or MRI up to this point, and they wheeled the gurney with the backboard on it (and me) down to wherever the CT machine was. The technician there was not the friendliest fellow, I thought (though in retrospect, I probably wasn't thinking anyone was nice for several days because of the effects of my brain injury). I told him I was in such incredible pain, and when he put me into the CT, I threw up while in there. I told him I felt like throwing up and he coldly instructed me not to do so while in the machine, but if I needed to later, to turn my head to the side. How was I going to turn my head with a broken neck?
I threw up several times after that. I didn't know it then, but vomiting is very indicative of brain injury. I felt so badly that my son had to see me like that, all messy from throwing up while lying flat, when they rolled me back into the room I'd been in before.
At some point, after the films were read, it was determined that what was wrong with me could not be taken care of at that hospital, and that I needed to have another ambulance ride to a larger city and another hospital.
Through all of this, the biggest and only thing I could think about was how much it hurt. To have trauma that close to the brain, it's indescribable. There is no time to worry about this or that, there is only being in the moment, in the arms of pure and deep pain. I am sure I prayed a lot. I am imagining the medics gave me something for the pain, but whatever it was, it was not enough to even make a difference.
I think I remember they gave me something like morphine for the ride south to the next hospital, and then they loaded me back up into the ambulance.
Flashback Part Three will be upcoming and will cover my stay at the second hospital.
*******************
After I went into the office and called 911, I returned to the tiny, very old, bow-back chair in our kitchen, first stopping at the freezer for a bag of frozen peas. Every injury I've ever had, I've put ice on it and had great success. Just like with horses. If I had a trauma to a horse's leg, I'd run cold water on it from a hose, several times a day.
I sat down with the peas (and remember, I had to remain bent over at the waist and allow my head to hang down because I could not hold the weight of my head up at all) and attempted to put the bag on the back of my neck, but that was over-the-top painful and I knew that wasn't going to happen. I just sat there with my head hanging down about to my knees, praying and worrying about what had happened to me. My husband came back in the house from putting the horse back in the barn. I can only imagine how worried he was. He expected to drive me to the emergency room but I told him that there really wasn't a chance that I could walk out to the pickup and climb up into it and then endure the ride to the hospital. I let him him know I'd called the ambulance, and then I remember sitting there saying out loud, "Why don't they get here? Why don't they get here?" It seemed SO long before he told me that they had arrived.
Several responders came into the kitchen and asked me some questions. I remember they asked me if I had been knocked out, and I'd answered no. It was a month later that the neurosurgeon told me that he felt I had lost consciousness, and since then, several other specialists have questioned me and all have come to the same conclusion: that I was knocked out. Since I was alone when it happened, we had to reconstruct events and what I did remember. One neurologist asked me if I remembered seeing stars or crashing through the fence, but I do not. My last memory is the horse stopping in front of the jump and my body tilting forward over the pommel of the saddle.
I've also read that the victim is not a reliable witness of whether loss of consciousness (LOC) occurred. Even so, "No LOC" appears on the paramedic's report.
The medics put a rigid neck collar on me, and then lifted up the tiny, antique chair with me in it, leaning it backwards to lower me down to the floor onto the backboard. I remember worrying whether that rickety chair would break with my 148 pounds in it, but thankfully, it held up. Once my back was on the backboard, they slipped out the chair and brought my legs down to a flat position.
They buckled me in and kept taking my blood pressure. Like all good medics everywhere, they asked me questions that would help them understand how lucid I was: the date of my birthday and what was the President's wife's name (Laura Bush).
Each step jolted even more the pain in my neck as the men carried me out to the open doors of the ambulance. Before they closed the door, I told the medics to ask my husband to bring my glasses. My sunglasses were still back at the jump where I fell, mangled from being caught between my face and the hard ground. I didn't have any glasses on when I led Jedi and walked back to the house, and still hadn't thought to put them on while in the house waiting for the ambulance to arrive. I am very near-sighted.
There was only a short quarter-mile of dirt road before we would hit pavement, but those 1300 feet were rutted by "washboard" and the pain was excrutiating. At that moment, I asked the medic who was attending to me if he was a Christian. He said something that was blatantly honest yet strange to tell someone in my position. He did not believe in God. I asked him to pray for me anyway.
Whenever the ambulance would come to a stop sign, the pain again was agonizing and I know I yowled in response. The driver would call back to me that he was trying to get there as quickly as he could. Finally, they backed into the ER and unloaded this broken horsetrainer, strapped to a hard and more-than-uncomfortable backboard. I am guessing now that they did not put me into a softer, cushioned gurney because of the unstable neck.
I was taken into an examining room and there was my husband and our 22 year old son. My husband told me later that he called our boy at work and told him to come to the hospital. I remember asking my son to please pray for me, and he said he would. I was in so much pain, particularly the very back, middle part of my skull. It hurt from being on the solid board, I thought (in retrospect, I am sure the back of my head would have hurt if it'd been nestled in a feather pillow!). A nurse came in and wiped off my face from the "wreck" and gave me a wet sponge on a stick to suck on. Someone took off my riding boots (naturally, I was still in my riding breeches and tall, black boots and spurs) and gave them to my husband.
I had a large scrape on the back of my left arm that had bled, but by this time was scabbed over. No one paid much attention to that, understandably. It was decided that I needed a CT scan. I had never had a CT or MRI up to this point, and they wheeled the gurney with the backboard on it (and me) down to wherever the CT machine was. The technician there was not the friendliest fellow, I thought (though in retrospect, I probably wasn't thinking anyone was nice for several days because of the effects of my brain injury). I told him I was in such incredible pain, and when he put me into the CT, I threw up while in there. I told him I felt like throwing up and he coldly instructed me not to do so while in the machine, but if I needed to later, to turn my head to the side. How was I going to turn my head with a broken neck?
I threw up several times after that. I didn't know it then, but vomiting is very indicative of brain injury. I felt so badly that my son had to see me like that, all messy from throwing up while lying flat, when they rolled me back into the room I'd been in before.
At some point, after the films were read, it was determined that what was wrong with me could not be taken care of at that hospital, and that I needed to have another ambulance ride to a larger city and another hospital.
Through all of this, the biggest and only thing I could think about was how much it hurt. To have trauma that close to the brain, it's indescribable. There is no time to worry about this or that, there is only being in the moment, in the arms of pure and deep pain. I am sure I prayed a lot. I am imagining the medics gave me something for the pain, but whatever it was, it was not enough to even make a difference.
I think I remember they gave me something like morphine for the ride south to the next hospital, and then they loaded me back up into the ambulance.
Flashback Part Three will be upcoming and will cover my stay at the second hospital.
Friday, September 21, 2007
No news is not good news...
Well, it's been another week and I still have not heard from TCI if I am to have the TCS surgery or not. This is becoming more and more frustrating. I've been diagnosed with Tethered Cord. But Dr. B wanted to review some test results before moving ahead with a firm plan for detethering. He's had those results 3 weeks. I want things to move along, get the authorization from work comp and get this wagon on the road. So that my fusion will not be pushed further into 2008 than February.
A week ago, I read a Bible lesson one night which said I should seek God and wait upon His timing. That is so hard to do. I hate not hearing anything back when I email.
Painwise, yesterday was not a good day. Had a lot of head/neck pain and painful legs, and very, very weak. And one of my worst cognitive days in a long time.
A week ago, I read a Bible lesson one night which said I should seek God and wait upon His timing. That is so hard to do. I hate not hearing anything back when I email.
Painwise, yesterday was not a good day. Had a lot of head/neck pain and painful legs, and very, very weak. And one of my worst cognitive days in a long time.
Thursday, September 20, 2007
The deer are helping me....I think!
This morning, I did some more deadheading of flowers and collecting seed-heads to scatter elsewhere. This is my plan: I know that next year, I will not be able to do a whole lot while I heal up from my fusion and gather back my neck strength post-halo. So, I am scattering, scattering seeds to the four winds around the place, with the expectation that next spring/summer, I'll be inundated with colorful flowers that will thrill my heart and soul. And I will not expect myself to weed these areas, they will "come as they are," all dressed up for the party and escorting a few less-than-savory and uninvited friends!
I noticed lots of deer droppings on my lawn. I thought, "Great fertilizer!" and then realized another added benefit to their presence. I've seen them outside the window, chomping on dropped acorns. This is so beneficial to me since every acorn seems to readily sprout into little oak trees in the spring and summer. Each one they enjoy is one less "weedy" tree growing in my yard.
I congratulated myself on having such wild friends helping me out until I approached my two barrels of petunias. The does and fawns must have extended their helping teeth to those planters and sadly, they don't seem to know or care the difference between fresh flowers and ones "gone by." Sigh...well, none of our friends are perfect, right?
Now, I'll struggle out, after a rest, to take a small container of coffee grounds to the compost bin. Yesterday, I watched while my husband stirred the bin with a pitchfork and added more leaves and dirt. And the smell of the decomposing material made me feel a part of the land again, as if we are farming in some, small way. The dried grasses carried the scent of hay and caused me to remember that it's not that long ago we were still feeding a stable-full of horses 2 times a day. I doubt those smells will ever NOT remind me of ranching. After all, I still think of my Dad and myself as a little girl whenever I pick raspberries!
I noticed lots of deer droppings on my lawn. I thought, "Great fertilizer!" and then realized another added benefit to their presence. I've seen them outside the window, chomping on dropped acorns. This is so beneficial to me since every acorn seems to readily sprout into little oak trees in the spring and summer. Each one they enjoy is one less "weedy" tree growing in my yard.
I congratulated myself on having such wild friends helping me out until I approached my two barrels of petunias. The does and fawns must have extended their helping teeth to those planters and sadly, they don't seem to know or care the difference between fresh flowers and ones "gone by." Sigh...well, none of our friends are perfect, right?
Now, I'll struggle out, after a rest, to take a small container of coffee grounds to the compost bin. Yesterday, I watched while my husband stirred the bin with a pitchfork and added more leaves and dirt. And the smell of the decomposing material made me feel a part of the land again, as if we are farming in some, small way. The dried grasses carried the scent of hay and caused me to remember that it's not that long ago we were still feeding a stable-full of horses 2 times a day. I doubt those smells will ever NOT remind me of ranching. After all, I still think of my Dad and myself as a little girl whenever I pick raspberries!
Pumpkins and other stuff
Did you know that pumpkins are berries? I didn't, and I just read that in this month's BH&G magazine
I also read something in there that I thought applied to how I feel. The section was comprised of tips for friends of women diagnosed with breast cancer. The first tip felt like it was speaking to me. It read that if you get a curt answer to the question, "How are you feeling?" that you should just accept that and not bring it up anymore. The friend will bring up how she feels or what is going on health-wise with her later on if she wants to talk about it. I think the tip was titled something like "Rely on your friend for timing."
I (and I may be different than other spinal cord injury patients) feel this same way. I will always answer "fine" when someone asks how I am. And I don't know how to avoid their question if they continue to press me for how I'm feeling, so I always end up giving a litany of what's going on with me. Which sort of depresses me, in a way.
I appreciate so much that you care, but just let me say "Fine" and let's move onto more pleasant topics!
********************
Yesterday, when my new magazine arrived in the mail, it was like a small gift I'd gotten for myself (I usually do not subscribe to magazines and this was a minor splurge). It was sunny, breezy and cool outside, but I took my treasure outside with a home-made latte, pulled my resin Adirondack chair into the sunlight, fluffed the pillows for my back and neck and sat down, wrapping my legs in my "moose blanket" that my sister gave me years ago. I sat out there for 45 minutes and soaked up nature.
I was always "out in nature" all day every day in my (what doctors call) "premorbid state." Today, I grab time outside whenever I can muster up the energy. Either deadheading my cosmos and nasturtiums or lightly watering a few thirsty hydrangeas, I revel in every moment of fresh air, orchestral birds, and growing plants.
I read little yesterday, out in the back yard in my chair. I kept being drawn to the sight above me of towering pines, azure sky and clouds skating westward. September winds whistled through the pines and rustled the oak leaves. I felt dreamy and wanted to nod off, but when I shut my eyes, they'd fly open in a few seconds. The moment was just too precious to waste on sleep.
I also read something in there that I thought applied to how I feel. The section was comprised of tips for friends of women diagnosed with breast cancer. The first tip felt like it was speaking to me. It read that if you get a curt answer to the question, "How are you feeling?" that you should just accept that and not bring it up anymore. The friend will bring up how she feels or what is going on health-wise with her later on if she wants to talk about it. I think the tip was titled something like "Rely on your friend for timing."
I (and I may be different than other spinal cord injury patients) feel this same way. I will always answer "fine" when someone asks how I am. And I don't know how to avoid their question if they continue to press me for how I'm feeling, so I always end up giving a litany of what's going on with me. Which sort of depresses me, in a way.
I appreciate so much that you care, but just let me say "Fine" and let's move onto more pleasant topics!
********************
Yesterday, when my new magazine arrived in the mail, it was like a small gift I'd gotten for myself (I usually do not subscribe to magazines and this was a minor splurge). It was sunny, breezy and cool outside, but I took my treasure outside with a home-made latte, pulled my resin Adirondack chair into the sunlight, fluffed the pillows for my back and neck and sat down, wrapping my legs in my "moose blanket" that my sister gave me years ago. I sat out there for 45 minutes and soaked up nature.
I was always "out in nature" all day every day in my (what doctors call) "premorbid state." Today, I grab time outside whenever I can muster up the energy. Either deadheading my cosmos and nasturtiums or lightly watering a few thirsty hydrangeas, I revel in every moment of fresh air, orchestral birds, and growing plants.
I read little yesterday, out in the back yard in my chair. I kept being drawn to the sight above me of towering pines, azure sky and clouds skating westward. September winds whistled through the pines and rustled the oak leaves. I felt dreamy and wanted to nod off, but when I shut my eyes, they'd fly open in a few seconds. The moment was just too precious to waste on sleep.
Tuesday, September 18, 2007
Painfully joyous
I've always loved oxymorons...two ideas that do not really go together, words that are opposites. Some people joke and say "military intelligence" is an oxymoron, or "postal service." Painful joy is something like that. How can joy hurt? Do we have a different sense of pain when joy causes it than when short-circuited nerve endings do the damage?
Today, we drove to our bigger shopping town, across the mighty Columbia River. As we rounded a bend in the road, a vast panorama spread across a living canvas in front of us. We've seen this same scene once or twice a week for the last five months. Today, it was much the same as it had been every other day. I've always known this spot will greet me at this point in the highway. I've even had my husband pull over and allow me to take a photo here.
Mt. Hood, ringed by foggy clouds, reigned in the distance, awaiting new snows that will not deny the rugged peak much longer. Foothills protected its flanks while flowing below is an abundance of water that is hard to describe. This river abounds with so much water in spite of many dams that dissect its length. Columbia Gorge winds whipped up white caps beneath the railroad trestle far below our own track.
Hard tears salted my eyes and I had to squint hard to prevent an unexplainable and overwhelming instinct to cry. Not from sadness but from a momentary, fiery, consuming sense of Creation and beauty. Me, sitting there in the passenger seat of our little truck, imprisoned by the CTO vest, four aluminum rods keeping me from turning my head or lifting it up or down. These rods also keep me from becoming distracted by roadside diversions. Because I wear bifocals, my vision is blurred except for one horizontal segment through my glasses, for I cannot look up or down to find the right strength within the lenses like I can without the vest on. I can only see clearly looking out...straight ahead...and God brought into that narrow viewpoint a most inspiring scene. Perhaps more than some, I could appreciate with a deepness of soul, without distraction, that postcard setting and the burn of acknowledged blessing filled my throat and painfully moistened my eyes.
It was a good thing.
Today, we drove to our bigger shopping town, across the mighty Columbia River. As we rounded a bend in the road, a vast panorama spread across a living canvas in front of us. We've seen this same scene once or twice a week for the last five months. Today, it was much the same as it had been every other day. I've always known this spot will greet me at this point in the highway. I've even had my husband pull over and allow me to take a photo here.
Mt. Hood, ringed by foggy clouds, reigned in the distance, awaiting new snows that will not deny the rugged peak much longer. Foothills protected its flanks while flowing below is an abundance of water that is hard to describe. This river abounds with so much water in spite of many dams that dissect its length. Columbia Gorge winds whipped up white caps beneath the railroad trestle far below our own track.
Hard tears salted my eyes and I had to squint hard to prevent an unexplainable and overwhelming instinct to cry. Not from sadness but from a momentary, fiery, consuming sense of Creation and beauty. Me, sitting there in the passenger seat of our little truck, imprisoned by the CTO vest, four aluminum rods keeping me from turning my head or lifting it up or down. These rods also keep me from becoming distracted by roadside diversions. Because I wear bifocals, my vision is blurred except for one horizontal segment through my glasses, for I cannot look up or down to find the right strength within the lenses like I can without the vest on. I can only see clearly looking out...straight ahead...and God brought into that narrow viewpoint a most inspiring scene. Perhaps more than some, I could appreciate with a deepness of soul, without distraction, that postcard setting and the burn of acknowledged blessing filled my throat and painfully moistened my eyes.
It was a good thing.
Dances with Wolves dark humor
There is a scene in Dances With Wolves in which Kevin Costner's character, Lt. Dunbar, is traveling westward toward his post, riding along with freightmaster, Timmons (Robert Pastorelli), a rough-hewn personality who had hauled cargo over those isolated and dangerous trails for many years. Timmons was the antithesis of Dunbar, a straight-laced officer, each button upon his uniform polished to a high gleam.
Driving the rickety freight wagon, pulled by a team of mules, Timmons navigates down through a grassy coulee, where there is clear evidence of a tragic ending to the dreams of a traveling homesteader's family. Their mules lie dead in the harness and the tall stalks of grass wave over the bodies of the interlopers, savagely killed by marauding Indians.
Timmons and Dunbar dismount and walk through the carnage. At one point, Dunbar hears Timmons laughing uproariously, looking down at something. Dunbar strides over to discover that what Timmons finds so humorous is a skull with an arrow sticking out of it. Dunbar asks Timmons why he is laughing, and Timmons, in a memorable example of dark humor, says through rotted teeth: "Someone's back home wond'rin' why she don't write!"
*****************************
This scene came to me today, as I struggled as I do each day with my conscience. I need to call my family and visit with them. I have relatives who will not linger many years more. I love them and want to hear their voices. I know they love me and are "back home wond'rin' " why I don't call.
I have friends who are very dear to me, living far away, and whom I find it very important to keep a relationship going with. Yet, I battle with the idea of calling them. Every day, my conscience haunts me about this.
Such a simple thing as a phone call. Why wouldn't I just easily pick up the phone and dial?
I've searched my heart about this and find several reasons:
*I have so little energy and so when I find I have some energy during a day, I will use it to get things done around my home.
*Visiting with people on the phone tires me so much. Since my head injury, I struggle with "abstract thinking," which is precisely what chatting on a phone requires.
* Most people want to talk about me. About how I feel. What my surgery plans are. I am so tired of thinking about me, that I try hard to steer the conversation toward THEIR news, their plans. I don't like revisiting all of medical stuff I live with each day. I know that friends are asking because they care, and calling and just talking about themselves seems positively rude and thoughtless. I felt the same way, before my present situation. Now, I want to think about something new, about others' plans...
* But that is an iffy subject because certain plans make me sad. If I hear about a friend going to a cowboy poetry gathering or a trail ride or horse show, it saddens my heart. Instead of just sorting out what I DO want to talk about, it's easier to just not talk at all!
*Physically holding the phone causes pain, and holding my head/neck perfectly still in order to hold the receiver steady at my ear will really cause symptoms to flare.
However, when someone calls me, I always enjoy the visit! If I have to initiate the call, sometimes I wonder if I ever would. Making a call seems like such a chore! But when a friend or
family member calls me, I so enjoy chatting and hearing their news.
Yet there are certain days when I feel like there's that symbolic arrow in the back of my head, and I worry about folks back home "wond'rin' why I don't write (or call)!"
Driving the rickety freight wagon, pulled by a team of mules, Timmons navigates down through a grassy coulee, where there is clear evidence of a tragic ending to the dreams of a traveling homesteader's family. Their mules lie dead in the harness and the tall stalks of grass wave over the bodies of the interlopers, savagely killed by marauding Indians.
Timmons and Dunbar dismount and walk through the carnage. At one point, Dunbar hears Timmons laughing uproariously, looking down at something. Dunbar strides over to discover that what Timmons finds so humorous is a skull with an arrow sticking out of it. Dunbar asks Timmons why he is laughing, and Timmons, in a memorable example of dark humor, says through rotted teeth: "Someone's back home wond'rin' why she don't write!"
*****************************
This scene came to me today, as I struggled as I do each day with my conscience. I need to call my family and visit with them. I have relatives who will not linger many years more. I love them and want to hear their voices. I know they love me and are "back home wond'rin' " why I don't call.
I have friends who are very dear to me, living far away, and whom I find it very important to keep a relationship going with. Yet, I battle with the idea of calling them. Every day, my conscience haunts me about this.
Such a simple thing as a phone call. Why wouldn't I just easily pick up the phone and dial?
I've searched my heart about this and find several reasons:
*I have so little energy and so when I find I have some energy during a day, I will use it to get things done around my home.
*Visiting with people on the phone tires me so much. Since my head injury, I struggle with "abstract thinking," which is precisely what chatting on a phone requires.
* Most people want to talk about me. About how I feel. What my surgery plans are. I am so tired of thinking about me, that I try hard to steer the conversation toward THEIR news, their plans. I don't like revisiting all of medical stuff I live with each day. I know that friends are asking because they care, and calling and just talking about themselves seems positively rude and thoughtless. I felt the same way, before my present situation. Now, I want to think about something new, about others' plans...
* But that is an iffy subject because certain plans make me sad. If I hear about a friend going to a cowboy poetry gathering or a trail ride or horse show, it saddens my heart. Instead of just sorting out what I DO want to talk about, it's easier to just not talk at all!
*Physically holding the phone causes pain, and holding my head/neck perfectly still in order to hold the receiver steady at my ear will really cause symptoms to flare.
However, when someone calls me, I always enjoy the visit! If I have to initiate the call, sometimes I wonder if I ever would. Making a call seems like such a chore! But when a friend or
family member calls me, I so enjoy chatting and hearing their news.
Yet there are certain days when I feel like there's that symbolic arrow in the back of my head, and I worry about folks back home "wond'rin' why I don't write (or call)!"
Monday, September 17, 2007
Elegant Blessings
Yesterday morning at about 7 am, I looked out our front window to see a lovely doe standing on our lawn about 20 feet from where I was watching. She looked directly at me when she noticed the movement behind the glass, and after staring for a few seconds, she arced her neck downward to go back to her search for acorns. Finding one, the doe lifted her head a couple of feet from the ground and chewed the morsel a tad less than daintily. She had no one to impress.
Behind her, I noticed a couple of large fawns haltingly walking through a little grove of oaks just beyond the grass. All of the deer walked with a pause between each stride, as if this space of time would allow them to wheel about and sprint into the woods if they perceived any alarm. And I believe it would. This "pause" gave the deer that halting appearance.
More and more deer came down from the hill to our front yard, totaling 15 or more. The acorns must be easier to forage from our short-cut lawn and weed-pulled dry areas than up in the leaf-littered forest floor, as there are many more oaks on the hill behind us.
The group was comprised of all does and fawns. The bucks are off alone in their bachelor bands. I have generously applied "Not Tonight Deer" to all of the plants and trees that I do not want the deer nibbling, a product made of emulsified rotten egg products. It works, I've used it for 20 years. Yet, even so, I watched carefully to see if they tried to taste my precious pine trees, the ones that will offer so much privacy from the road in five years or so. They avoided the trees and eventually all jumped easily over our 3 foot chain link fence. Even the small fawn that limped on her right front foot.
It was all such a diorama to watch and I felt gifted to be watching it all. Hmmmm...I hear the words "oysters on the half shell" and somehow it twists in my mind to voicing, "Blessings on the cloven hoof."
Behind her, I noticed a couple of large fawns haltingly walking through a little grove of oaks just beyond the grass. All of the deer walked with a pause between each stride, as if this space of time would allow them to wheel about and sprint into the woods if they perceived any alarm. And I believe it would. This "pause" gave the deer that halting appearance.
More and more deer came down from the hill to our front yard, totaling 15 or more. The acorns must be easier to forage from our short-cut lawn and weed-pulled dry areas than up in the leaf-littered forest floor, as there are many more oaks on the hill behind us.
The group was comprised of all does and fawns. The bucks are off alone in their bachelor bands. I have generously applied "Not Tonight Deer" to all of the plants and trees that I do not want the deer nibbling, a product made of emulsified rotten egg products. It works, I've used it for 20 years. Yet, even so, I watched carefully to see if they tried to taste my precious pine trees, the ones that will offer so much privacy from the road in five years or so. They avoided the trees and eventually all jumped easily over our 3 foot chain link fence. Even the small fawn that limped on her right front foot.
It was all such a diorama to watch and I felt gifted to be watching it all. Hmmmm...I hear the words "oysters on the half shell" and somehow it twists in my mind to voicing, "Blessings on the cloven hoof."
Sunday, September 16, 2007
To paraphrase Tina Turner, "What's Chiari got to do with it?
Today, I help moderate a wonderful support-group's message board online. I participated for a couple of years at another message board. Both of these boards are for people with Arnold Chiari Malformation, Syringomyelia and related disorders.
I have many friends now all over the country who have these conditions. I am a patient of The Chiari Institute in Great Neck, NY, over 3000 miles away. Yet, I do not have Chiari. So, what's Chiari got to do with me?
After I broke my neck in April, 2007, I went on full-time disability with work-comp for seven months before I went back to work training horses.
My neurosurgeon who took care of me immediately post-injury later counselled me that I could never jump horses again. He said, "It's too hard on the spine." I remember that day in his office, him saying, "I doubt you will ever ride professionally again." I looked him straight in the eye and said, "I bet I do!" I thought that he didn't know me, who I was, my will and drive to work and to keep on keeping on. I'd prove HIM wrong!
How little I understood then. In retrospect now, it's turned out that he was 100% correct.
When I went back to riding horses, I noticed I started getting much worse. Even though I was taking it easy and not jumping, even though I was so happy to be back training horses, I still went into a state of decline which continues to this day, three years later. None of my doctors seemed to understand why I wasn't getting better. My own doctor managing my care often told me, "Your case puzzles me." It seemed to puzzle any doctor I was sent to. I was told that my C1 fracture had healed fine and "straight."
Suffering with major fatigue and weakness, numbness and tingling in my extremities and other assorted symptoms, I asked to see a neurologist. I didn't understand much about anything really, but I knew my situation was neurological. The neurologist who saw me did tell me first that my brain injury was much worse than anyone understood because the doctors had been dwelling on the severity of the Jefferson fracture.
After seeing me three times, the neurologist surprised me at the fourth visit when he said, "I won't see you again until you are evaluated by a neuropsychologist. This could all be emotional!" I cried so hard when he said that. I KNEW my problems were not due to emotions or depression. I knew they had a physiological cause. But...what?
Someone, a professional, told me off the record that he thought I had MS. I started researching MS on the internet and joined a support-group's message board. Many, if not most, of the symptoms for MS seemed to apply to my situation, but something did not ring quite true.
One day, a woman came onto the MS board and said that her daughter had been diagnosed with Chiari Malformation and that she had been misdiagnosed for years with MS. The author wrote that she'd read that many people who are diagnosed with MS or fibromyalgia or chronic fatigue syndrome actually do not have those conditions, but instead, they have Arnold Chiari Malformation (ACM).
In the background of all of this, I was still hearing from various doctors that they did not know what was wrong with me. All I could think was maybe I had something congenital going on that the injury exacerbated. I began to research ACM and was surprised to find so much in common symptom-wise with these patients. I began to study my own MRIs and compare them to the images I found online. To me, it looked possible that I might in fact have something called Chiari Zero. [I will create another post that will more explain ACM and Chiari Zero, rather than going into that here.]
Looking back on all of this, I can see God's Hand in using this condition to bring me to the doctor who would understand what was going on with me, and who knows better than anyone in the world how to help me. But of course, in the middle of it all, taking those little tentative steps, I couldn't know the future, I could only muddle along in uncertainty as I self-advocated, as I researched and printed out medical articles. I joined a Chiari support-group online, where I was
welcomed and mentored.
Someone from that community suggested I seek out evaluation from an ACM expert in California. Seeing this expert became my goal, my dream, my ticket (I believed) to true diagnosis and the end to anyone telling me ever again that my symptoms were due to emotions.
I bravely took my MRIs with me to my primary injury doctor and I launched into my hypothesis that I might in fact have ACM. I give him credit: he respected me as a researcher. He looked at the MRI's that I clipped up onto his light box. I showed him the printed out MRIs of patients with ACM0 and together, we compared them my images.
There just might be something to this, we both thought. I asked to be sent to the expert to be evaluated.
Kudos to my primary, he requested the evaluation, and eventually, I made the trip. However, I ended up leaving that doctor's office crying, having once again been told by a doctor that he did not know what was wrong with me. I also heard that I did not have Chiari.
This neurosurgeon did look at my Jefferson Fracture on the CT scans taken the day of my injury, and shaking his head, stated, "Not too many people walk away from that one!" But he also told me that I should not trust anyone who might say they knew what was wrong with me, and I was also lectured: "You are lucky to be alive. Get off the internet and get on with your life." I was given isometric neck exercises to strengthen my neck muscles, told to stop wearing my soft-foam collar, and sent home.
It was a tough drive home. My friend Dolores, who drove me there, let me cry and helped me through the thought process to find my way through so vast a disappointment. I felt rejected, I felt I had been ill-treated. And I had no idea where next to go.
**************************
That visit to the ACM expert took place in February, 2006. I continued on the ACM message board because I just did not have any peers who had suffered a Jefferson Fracture with whom to communicate. These good folks allowed me to stay in their group and I continued to learn about Chiari. I still thought that I might have Chiari Zero, and if I could only get to The Chiari Institute that I read about on the board, I somehow knew that I would have the answers, whatever those answers might be.
I learned that people with similar conditions are so helpful, so big-hearted. Women I never have met before but who I grew to trust through emails networked to get me in touch with the specialist at TCI via email. I was shocked that Dr. Bolognese would email me when I was not even his patient, and when he seemed like such a superstar to me. I told him of my symptoms and my story, and he suggested that I get an "at-home traction unit" and follow his instructions with its use.
I first asked my primary if this was okay, and he authorized the use of the unit. Following Dr. B's instructions, I started the traction, and Dr. B told me soon that I could stop, that the traction had served its purpose, and that he felt I have craniocervical instabililty.
I would guess now that this all happened toward the end of the summer of 2006. After going through the diagnostic traction, I wanted more than ever to go TCI and see Dr. Bolognese. But...how? My injured brain could not wrap around how I could get there. I wasn't getting authorization from work comp to go there. In fact, my doctor told me that work comp never sent anyone out of state for treatment or evaluation. When he said that, I thought of the power of my God, and blurted out, "That's okay. I don't mind being the first one!"
But that didn't seem to be happening, so in January of 2007, I stepped out in faith and went on my own. Flying to NY was not easy for me. I was hurting so badly. My brain was so confused and tired. A Chiari friend I met online met me there and acted as my companion for the entire trip. She was a God-send and also a TCI patient.
Finally, there I was in his office, meeting Dr. Bolognese! He wasted no time in pointing right to my new CT scan to show me that my C1 is still broken. It never fused on its own. He used the term: "non-union" fracture.
When he said that I was a surgical candidate and he would be my surgeon, I believe my heart had wings. I felt like a schoolgirl along the wall at a high-school dance, being asked to waltz for the first time by the most popular boy in the class. It seemed like a knight in the proverbial shining armor was offering to help me...was honoring me...was SEEING me finally and seeing clearly what was wrong. Was seeing what was so evident and easy to see, IF someone just would look.
Dr. B said I do not have Chiari. But he said my skull has rotated backwards to where it is resting on the posterior part of my C1, where there should be the space of (and he held up his hand to demonstrate...) "a pinky finger" between the two. He showed this to me on the incredible 3D CTs that are done for TCI at Manhasset Diagnostics. I do have low-lying tonsils, but hopefully, once my head and neck are extracted upwards, all the angles and measurements within my brain will come back more into normal alignment.
I now can imagine what Columbus felt like when he spotted land in the West Indies. What Balboa must have experienced when he first sighted the Pacific Ocean. I had reached my Promised Land. After years of suffering and feeling disrespected and misunderstood, I was now being told and shown that all of my pains and neuropathy had a reason, a valid reason to exist.
I have many friends now all over the country who have these conditions. I am a patient of The Chiari Institute in Great Neck, NY, over 3000 miles away. Yet, I do not have Chiari. So, what's Chiari got to do with me?
After I broke my neck in April, 2007, I went on full-time disability with work-comp for seven months before I went back to work training horses.
My neurosurgeon who took care of me immediately post-injury later counselled me that I could never jump horses again. He said, "It's too hard on the spine." I remember that day in his office, him saying, "I doubt you will ever ride professionally again." I looked him straight in the eye and said, "I bet I do!" I thought that he didn't know me, who I was, my will and drive to work and to keep on keeping on. I'd prove HIM wrong!
How little I understood then. In retrospect now, it's turned out that he was 100% correct.
When I went back to riding horses, I noticed I started getting much worse. Even though I was taking it easy and not jumping, even though I was so happy to be back training horses, I still went into a state of decline which continues to this day, three years later. None of my doctors seemed to understand why I wasn't getting better. My own doctor managing my care often told me, "Your case puzzles me." It seemed to puzzle any doctor I was sent to. I was told that my C1 fracture had healed fine and "straight."
Suffering with major fatigue and weakness, numbness and tingling in my extremities and other assorted symptoms, I asked to see a neurologist. I didn't understand much about anything really, but I knew my situation was neurological. The neurologist who saw me did tell me first that my brain injury was much worse than anyone understood because the doctors had been dwelling on the severity of the Jefferson fracture.
After seeing me three times, the neurologist surprised me at the fourth visit when he said, "I won't see you again until you are evaluated by a neuropsychologist. This could all be emotional!" I cried so hard when he said that. I KNEW my problems were not due to emotions or depression. I knew they had a physiological cause. But...what?
Someone, a professional, told me off the record that he thought I had MS. I started researching MS on the internet and joined a support-group's message board. Many, if not most, of the symptoms for MS seemed to apply to my situation, but something did not ring quite true.
One day, a woman came onto the MS board and said that her daughter had been diagnosed with Chiari Malformation and that she had been misdiagnosed for years with MS. The author wrote that she'd read that many people who are diagnosed with MS or fibromyalgia or chronic fatigue syndrome actually do not have those conditions, but instead, they have Arnold Chiari Malformation (ACM).
In the background of all of this, I was still hearing from various doctors that they did not know what was wrong with me. All I could think was maybe I had something congenital going on that the injury exacerbated. I began to research ACM and was surprised to find so much in common symptom-wise with these patients. I began to study my own MRIs and compare them to the images I found online. To me, it looked possible that I might in fact have something called Chiari Zero. [I will create another post that will more explain ACM and Chiari Zero, rather than going into that here.]
Looking back on all of this, I can see God's Hand in using this condition to bring me to the doctor who would understand what was going on with me, and who knows better than anyone in the world how to help me. But of course, in the middle of it all, taking those little tentative steps, I couldn't know the future, I could only muddle along in uncertainty as I self-advocated, as I researched and printed out medical articles. I joined a Chiari support-group online, where I was
welcomed and mentored.
Someone from that community suggested I seek out evaluation from an ACM expert in California. Seeing this expert became my goal, my dream, my ticket (I believed) to true diagnosis and the end to anyone telling me ever again that my symptoms were due to emotions.
I bravely took my MRIs with me to my primary injury doctor and I launched into my hypothesis that I might in fact have ACM. I give him credit: he respected me as a researcher. He looked at the MRI's that I clipped up onto his light box. I showed him the printed out MRIs of patients with ACM0 and together, we compared them my images.
There just might be something to this, we both thought. I asked to be sent to the expert to be evaluated.
Kudos to my primary, he requested the evaluation, and eventually, I made the trip. However, I ended up leaving that doctor's office crying, having once again been told by a doctor that he did not know what was wrong with me. I also heard that I did not have Chiari.
This neurosurgeon did look at my Jefferson Fracture on the CT scans taken the day of my injury, and shaking his head, stated, "Not too many people walk away from that one!" But he also told me that I should not trust anyone who might say they knew what was wrong with me, and I was also lectured: "You are lucky to be alive. Get off the internet and get on with your life." I was given isometric neck exercises to strengthen my neck muscles, told to stop wearing my soft-foam collar, and sent home.
It was a tough drive home. My friend Dolores, who drove me there, let me cry and helped me through the thought process to find my way through so vast a disappointment. I felt rejected, I felt I had been ill-treated. And I had no idea where next to go.
**************************
That visit to the ACM expert took place in February, 2006. I continued on the ACM message board because I just did not have any peers who had suffered a Jefferson Fracture with whom to communicate. These good folks allowed me to stay in their group and I continued to learn about Chiari. I still thought that I might have Chiari Zero, and if I could only get to The Chiari Institute that I read about on the board, I somehow knew that I would have the answers, whatever those answers might be.
I learned that people with similar conditions are so helpful, so big-hearted. Women I never have met before but who I grew to trust through emails networked to get me in touch with the specialist at TCI via email. I was shocked that Dr. Bolognese would email me when I was not even his patient, and when he seemed like such a superstar to me. I told him of my symptoms and my story, and he suggested that I get an "at-home traction unit" and follow his instructions with its use.
I first asked my primary if this was okay, and he authorized the use of the unit. Following Dr. B's instructions, I started the traction, and Dr. B told me soon that I could stop, that the traction had served its purpose, and that he felt I have craniocervical instabililty.
I would guess now that this all happened toward the end of the summer of 2006. After going through the diagnostic traction, I wanted more than ever to go TCI and see Dr. Bolognese. But...how? My injured brain could not wrap around how I could get there. I wasn't getting authorization from work comp to go there. In fact, my doctor told me that work comp never sent anyone out of state for treatment or evaluation. When he said that, I thought of the power of my God, and blurted out, "That's okay. I don't mind being the first one!"
But that didn't seem to be happening, so in January of 2007, I stepped out in faith and went on my own. Flying to NY was not easy for me. I was hurting so badly. My brain was so confused and tired. A Chiari friend I met online met me there and acted as my companion for the entire trip. She was a God-send and also a TCI patient.
Finally, there I was in his office, meeting Dr. Bolognese! He wasted no time in pointing right to my new CT scan to show me that my C1 is still broken. It never fused on its own. He used the term: "non-union" fracture.
When he said that I was a surgical candidate and he would be my surgeon, I believe my heart had wings. I felt like a schoolgirl along the wall at a high-school dance, being asked to waltz for the first time by the most popular boy in the class. It seemed like a knight in the proverbial shining armor was offering to help me...was honoring me...was SEEING me finally and seeing clearly what was wrong. Was seeing what was so evident and easy to see, IF someone just would look.
Dr. B said I do not have Chiari. But he said my skull has rotated backwards to where it is resting on the posterior part of my C1, where there should be the space of (and he held up his hand to demonstrate...) "a pinky finger" between the two. He showed this to me on the incredible 3D CTs that are done for TCI at Manhasset Diagnostics. I do have low-lying tonsils, but hopefully, once my head and neck are extracted upwards, all the angles and measurements within my brain will come back more into normal alignment.
I now can imagine what Columbus felt like when he spotted land in the West Indies. What Balboa must have experienced when he first sighted the Pacific Ocean. I had reached my Promised Land. After years of suffering and feeling disrespected and misunderstood, I was now being told and shown that all of my pains and neuropathy had a reason, a valid reason to exist.
Saturday, September 15, 2007
The Beauty of Math
My friend Cleo sent this to me today and I wanted to share it here. It was just too astonishing!
Beauty of Math!
1 x 8 + 1 = 9
12 x 8 + 2 = 98
123 x 8 + 3 = 987
1234 x 8 + 4 = 9876
12345 x 8 + 5 = 98765
123456 x 8 + 6 = 987654
1234567 x 8 + 7 = 9876543
12345678 x 8 + 8 = 98765432
123456789 x 8 + 9 = 987654321
1 x 9 + 2 = 11
12 x 9 + 3 = 111
123 x 9 + 4 = 1111
1234 x 9 + 5 = 11111
12345 x 9 + 6 = 111111
123456 x 9 + 7 = 1111111
1234567 x 9 + 8 = 11111111
12345678 x 9 + 9 = 111111111
123456789 x 9 +10= 1111111111
9 x 9 + 7 = 88
98 x 9 + 6 = 888
987 x 9 + 5 = 8888
9876 x 9 + 4 = 88888
98765 x 9 + 3 = 888888
987654 x 9 + 2 = 8888888
9876543 x 9 + 1 = 88888888
98765432 x 9 + 0 = 888888888
Brilliant, isn't it?
And look at this symmetry:
1 x 1 = 1
11 x 11 = 121
111 x 111 = 12321
1111 x 1111 = 1234321
11111 x 11111 = 123454321
111111 x 111111 = 12345654321
1111111 x 1111111 = 1234567654321
11111111 x 11111111 = 123456787654321
111111111 x 111111111=12345678987654321
Now, take a look at this...
101%
From a strictly mathematical viewpoint:
What Equals 100%? What does it mean to give MORE than 100%?
Ever wonder about those people who say they are giving more than 100%?
We have all been in situations where someone wants you to GIVE OVER
100%.
How about ACHIEVING 101%?
What equals 100% in life?
Here's a little mathematical formula that might help answer these
questions:
If:
A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
Is represented as:
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26.
If:
H-A-R-D-W-O-R- K
8+1+18+4+23+15+18+11 = 98%
And:
K-N-O-W-L-E-D-G-E
11+14+15+23+12+5+4+7+5 = 96%
But:
A-T-T-I-T-U-D-E
1+20+20+9+20+21+4+5 = 100%
THEN, look how far the love of God will take you:
L-O-V-E-O-F-G-O-D
12+15+22+5+15+6+7+15+4 = 101%
Therefore, one can conclude with mathematical certainty that:
While Hard Work and Knowledge will get you close, and Attitude will
get you there, It's the Love of God that will put you over the top!
Beauty of Math!
1 x 8 + 1 = 9
12 x 8 + 2 = 98
123 x 8 + 3 = 987
1234 x 8 + 4 = 9876
12345 x 8 + 5 = 98765
123456 x 8 + 6 = 987654
1234567 x 8 + 7 = 9876543
12345678 x 8 + 8 = 98765432
123456789 x 8 + 9 = 987654321
1 x 9 + 2 = 11
12 x 9 + 3 = 111
123 x 9 + 4 = 1111
1234 x 9 + 5 = 11111
12345 x 9 + 6 = 111111
123456 x 9 + 7 = 1111111
1234567 x 9 + 8 = 11111111
12345678 x 9 + 9 = 111111111
123456789 x 9 +10= 1111111111
9 x 9 + 7 = 88
98 x 9 + 6 = 888
987 x 9 + 5 = 8888
9876 x 9 + 4 = 88888
98765 x 9 + 3 = 888888
987654 x 9 + 2 = 8888888
9876543 x 9 + 1 = 88888888
98765432 x 9 + 0 = 888888888
Brilliant, isn't it?
And look at this symmetry:
1 x 1 = 1
11 x 11 = 121
111 x 111 = 12321
1111 x 1111 = 1234321
11111 x 11111 = 123454321
111111 x 111111 = 12345654321
1111111 x 1111111 = 1234567654321
11111111 x 11111111 = 123456787654321
111111111 x 111111111=12345678987654321
Now, take a look at this...
101%
From a strictly mathematical viewpoint:
What Equals 100%? What does it mean to give MORE than 100%?
Ever wonder about those people who say they are giving more than 100%?
We have all been in situations where someone wants you to GIVE OVER
100%.
How about ACHIEVING 101%?
What equals 100% in life?
Here's a little mathematical formula that might help answer these
questions:
If:
A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
Is represented as:
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26.
If:
H-A-R-D-W-O-R- K
8+1+18+4+23+15+18+11 = 98%
And:
K-N-O-W-L-E-D-G-E
11+14+15+23+12+5+4+7+5 = 96%
But:
A-T-T-I-T-U-D-E
1+20+20+9+20+21+4+5 = 100%
THEN, look how far the love of God will take you:
L-O-V-E-O-F-G-O-D
12+15+22+5+15+6+7+15+4 = 101%
Therefore, one can conclude with mathematical certainty that:
While Hard Work and Knowledge will get you close, and Attitude will
get you there, It's the Love of God that will put you over the top!
A note from a friend
My friend Keesha wrote this to me after the night I wrote about Central Pain. I thought it was so poignant.
Central Pain Syndrome.
I see your words.
I hear you.
It is true. Just as I have found there is no way to reach the deep roots of Central Pain, there are no words to describe it. The waters run too deep.
For the same reason, I sit here at 12:33 a.m. I am sorry this is the life we are in--but remember you are not alone.
See her blog at www.chiarian.blogspot.com. Learn about Arnold Chiari Malformation, Ehlers Danlos Syndrome, Tethered Cord and other related conditions. And send up a prayer for her, too!
Central Pain Syndrome.
I see your words.
I hear you.
It is true. Just as I have found there is no way to reach the deep roots of Central Pain, there are no words to describe it. The waters run too deep.
For the same reason, I sit here at 12:33 a.m. I am sorry this is the life we are in--but remember you are not alone.
See her blog at www.chiarian.blogspot.com. Learn about Arnold Chiari Malformation, Ehlers Danlos Syndrome, Tethered Cord and other related conditions. And send up a prayer for her, too!
Friday, September 14, 2007
My least favorite household chore
I love to keep house. I enjoy a very clean house and having things look nice. It's not drudgery for me, it's rewarding. But my least favorite thing to do is to empty the dishwasher. Ever since I broke my neck, this has been something that has subtly been irritating. The reason? That bending over and looking left and right, up and down, it causes me to feel dizzy, even a little nauseous. I can't think of any other way to get the job done than to just do it, but I always hate it.
To me, it was interesting in the summer of 2006 when Dr. Bolognese had me first try the "over the door" cervical traction unit. He had me try this for diagnostic purposes, to see if traction would make me feel any better. I worked my way up to 8 lbs on the traction (when they perform the traction for the fusion surgery, they will use up to 30 lbs) for 15 minutes, once a day.
My results were, according to Dr. B, "spectacular." I kept a log and turned it in to him to review. And he did review it and told me that the fact that for 45 minutes after doing the traction, I felt
almost normal was a spectacular result. I remember feeling so good, being able to breathe and think clearly, and I remember today that back then, after traction, I could empty the dishwasher without feeling dizzy. Of course, after those good feelings wore off and the weight of my skull settled back down onto my C1 and whatever nerves it is pinching, I felt much worse and ended up in bed for days.
I wanted to note here for my own journaling purposes that one symptom is definitely gaining strength and frequency. That is the little "losing balance" episodes that I experience several tims a day. I lean slightly to flush the toilet and have to catch myself from falling. I step flat-footed up to a cupboard on an even floor, and I will often have little "off balance" episodes.
Some of the symptoms I've dealt with since my injury have fallen by the wayside, some are still with me, and a few have amped up. The latter include, besides balance stuff, weakness in my legs, painful nerviness all over, painful feet/legs/hips, difficulties with thinking, poor judgment, and suboccipital pain.
To me, it was interesting in the summer of 2006 when Dr. Bolognese had me first try the "over the door" cervical traction unit. He had me try this for diagnostic purposes, to see if traction would make me feel any better. I worked my way up to 8 lbs on the traction (when they perform the traction for the fusion surgery, they will use up to 30 lbs) for 15 minutes, once a day.
My results were, according to Dr. B, "spectacular." I kept a log and turned it in to him to review. And he did review it and told me that the fact that for 45 minutes after doing the traction, I felt
almost normal was a spectacular result. I remember feeling so good, being able to breathe and think clearly, and I remember today that back then, after traction, I could empty the dishwasher without feeling dizzy. Of course, after those good feelings wore off and the weight of my skull settled back down onto my C1 and whatever nerves it is pinching, I felt much worse and ended up in bed for days.
I wanted to note here for my own journaling purposes that one symptom is definitely gaining strength and frequency. That is the little "losing balance" episodes that I experience several tims a day. I lean slightly to flush the toilet and have to catch myself from falling. I step flat-footed up to a cupboard on an even floor, and I will often have little "off balance" episodes.
Some of the symptoms I've dealt with since my injury have fallen by the wayside, some are still with me, and a few have amped up. The latter include, besides balance stuff, weakness in my legs, painful nerviness all over, painful feet/legs/hips, difficulties with thinking, poor judgment, and suboccipital pain.
Are you aware of the Life Force within you?
The Spanish have a word for it: Brillo. Pronounced BREE-ohhh.
The English word, Brilliance, must come from the same Latin derivative. Thus, for us "brilliance" gives an understanding of our life force within us. Vivacity. Vitality. Latin "vita" means Life....Latin "Viva" means Life. We can now comprehend that Life has something to do with vivacity and vitality, and vice versa!
When the Spanish wish to describe the energy and exuberance they'd like their horses to exhibit, they use the word "brillo." American Western Pleasure riders? Your horses are the exact opposite of "brillo." You train them to be subdued, to hang their heads low, to have a glassy look in their eyes, to appear robotic.
Once, on a ranch in Colorado, I took our Mexican ranch-hand out with me to look for cows. Julio had not ridden with me before and I had no idea of his skills, if any. The horse I chose for him was Sunny, a gentle Palomino who I trained and worked with to become quiet and calm for his novice rider, our boss-lady.
As I rode ahead of Julio, I looked back occasionally to see how he was doing. Just a ways down the old ranch road, I looked back, and Julio had taken the ends of his long reins and was snapping them back and forth, side to side, of his horse, Sunny. At a walk, the bombproof gelding was prancing, neck arched, head up, ears up, excited but controllable.
I sort of yelled, "What are you doing!" and Julio said, "I'm waking him up."
I told him, "Don't do that! Our boss-lady would never be able to control that horse if he pranced like that."
Julio was doing what he had learned in his homeland: To bring up the "brillo" in the horse.
**************************************
Humans have "brillo." I was really not aware of it until I broke my C1. But in order to even get up, get dressed and go to the store takes a modicum of it. To visit with friends, laughing, takes more. And to get onstage to perform takes a ton of it!
I have learned, the hard way, that every single thing that we do goes directly through the upper Cspine and skull base. There is nothing we do that does not start or begin there. Any straining, even in your legs, will impact that area. Walking impacts the skull base area. Moving an arm. Laughing. Chewing. Talking. Crying. Even thinking!
We are wondrously made, and so in the undamaged person, these things do not negatively affect the skull base. Things work as they should, and this is no problem...if everything is in good working order.
Bringing up the life force, the Brillo in us goes directly through the skull base area. I can attest to that. If doctors want to know about this, they can ask me.
Now, I'm not feeling sorry for myself, please understand that, but imagine living where you cannot bring up that vitality. I suppose I could but I would pay immediately for this. If I work up some of this life force to play with my dog, for example....briskly working my arms back and forth and my voice getting some excitement in it: "You're such a good dog! You're a good dog! Go get the ball! You wanna play?" I will immediately feel the effects.
My arms will tingle, my feet will go painfully numb, my brain will feel fried (burning and hard to think), and I will be overcome with weakness that is also painful. I asked my surgeon about this, if it would be better after my extraction fusion. He suggested I try my over-the-door traction unit when I feel this sort of reaction. See if it feels relieved. He is a smart man (oops, I've said that before) and he was right...it does relieve it. (however, the traction unit is simply diagnostic for me. When I use it and then take it off, I get total "rebound," meaning that nerve compression is back with even worse afects.)
But the relief while in the traction means that when I have the rods screwed into the back of my skull and going down my Cspine to C5, this should take the compression off whatever nerves are being pinched, and hopefully, I would not have this reaction to the core and center of our existence, our brillo.
The English word, Brilliance, must come from the same Latin derivative. Thus, for us "brilliance" gives an understanding of our life force within us. Vivacity. Vitality. Latin "vita" means Life....Latin "Viva" means Life. We can now comprehend that Life has something to do with vivacity and vitality, and vice versa!
When the Spanish wish to describe the energy and exuberance they'd like their horses to exhibit, they use the word "brillo." American Western Pleasure riders? Your horses are the exact opposite of "brillo." You train them to be subdued, to hang their heads low, to have a glassy look in their eyes, to appear robotic.
Once, on a ranch in Colorado, I took our Mexican ranch-hand out with me to look for cows. Julio had not ridden with me before and I had no idea of his skills, if any. The horse I chose for him was Sunny, a gentle Palomino who I trained and worked with to become quiet and calm for his novice rider, our boss-lady.
As I rode ahead of Julio, I looked back occasionally to see how he was doing. Just a ways down the old ranch road, I looked back, and Julio had taken the ends of his long reins and was snapping them back and forth, side to side, of his horse, Sunny. At a walk, the bombproof gelding was prancing, neck arched, head up, ears up, excited but controllable.
I sort of yelled, "What are you doing!" and Julio said, "I'm waking him up."
I told him, "Don't do that! Our boss-lady would never be able to control that horse if he pranced like that."
Julio was doing what he had learned in his homeland: To bring up the "brillo" in the horse.
**************************************
Humans have "brillo." I was really not aware of it until I broke my C1. But in order to even get up, get dressed and go to the store takes a modicum of it. To visit with friends, laughing, takes more. And to get onstage to perform takes a ton of it!
I have learned, the hard way, that every single thing that we do goes directly through the upper Cspine and skull base. There is nothing we do that does not start or begin there. Any straining, even in your legs, will impact that area. Walking impacts the skull base area. Moving an arm. Laughing. Chewing. Talking. Crying. Even thinking!
We are wondrously made, and so in the undamaged person, these things do not negatively affect the skull base. Things work as they should, and this is no problem...if everything is in good working order.
Bringing up the life force, the Brillo in us goes directly through the skull base area. I can attest to that. If doctors want to know about this, they can ask me.
Now, I'm not feeling sorry for myself, please understand that, but imagine living where you cannot bring up that vitality. I suppose I could but I would pay immediately for this. If I work up some of this life force to play with my dog, for example....briskly working my arms back and forth and my voice getting some excitement in it: "You're such a good dog! You're a good dog! Go get the ball! You wanna play?" I will immediately feel the effects.
My arms will tingle, my feet will go painfully numb, my brain will feel fried (burning and hard to think), and I will be overcome with weakness that is also painful. I asked my surgeon about this, if it would be better after my extraction fusion. He suggested I try my over-the-door traction unit when I feel this sort of reaction. See if it feels relieved. He is a smart man (oops, I've said that before) and he was right...it does relieve it. (however, the traction unit is simply diagnostic for me. When I use it and then take it off, I get total "rebound," meaning that nerve compression is back with even worse afects.)
But the relief while in the traction means that when I have the rods screwed into the back of my skull and going down my Cspine to C5, this should take the compression off whatever nerves are being pinched, and hopefully, I would not have this reaction to the core and center of our existence, our brillo.
How do you keep that smile on your face?
No one asks me that, really, but I often hear people telling me that I have a positive attitude. They remark, "You are dealing with THAT and yet you are smiling?"
In town, I smile at people on the street over the hard chin piece of my CTO jacket.
So what is up with that smile or the absence of dwelling on the pain and loss of way of life?
I can say honestly that that smile is not phony or a facade.
First of all, I have my faith. I am a strong believer in the Lord Jesus Christ. I believe He is God in the flesh, the only way to God ("I am the way, the Truth and the Life; no man cometh to the Father but by me" He said). Faith in Him is the number one thing that keeps me going. Faith that God has a plan.
I smile because I don't want anyone to feel sorry for me. For this same reason, if someone casually asks, "How are you?" I most often will say "Fine." What other words would do? What words would describe that deep invasive pervasive diffuse painfully OFF, out of kilter, not myself nor any other creature I know of? And the kind person inquiring, do they really want to know? Perhaps a few do...but for me, it's a smile and a "Fine." Somehow, I do feel a little more "fine" for having stated it.
I can smile because I know many others now so much worse off than I am. Who am I to complain? When you are a healthy cowgirl, all of your friends are healthy cowgirls, strong women who drive big trucks and throw bales and who pity the poor man who might try to hurt them. When you get hurt and become less than what you were, you suddenly find this whole community of hurting people out there, a social club no one wants to belong to. This is the beauty, in a strange, perverse way, of being injured. You come to know people you never would have encountered before. You have more time to get to know them. You can even relate more to them than to healthy people. So, I can smile because I know some folks who have it really bad!
This blog is the place for honesty, otherwise, what is the point? To a healthy person, this might seem like focusing on the bad, concentrating on the pain. But this is not what writing here is about.
To survive at all, I have learned instinctively to avoid. I'm the Queen of Avoidance. I avoid horses. I avoid songs and poems about horses. I had to put my dog to sleep a month ago, and I do not have his picture where I can see it. I avoid the pain I CAN avoid. That is pain I CAN control.
I've become like Miss Scarlett. "I won't think about that today. I'll think about it tomorrow, when I am stronger." If I start to think about the things I can't do anymore; if I stop to think about things worsening ("progressing" seems like an anti-meaning to the word. Progress is a good thang, Martha!); if I allow myself to "go there," then I lose. I would feel worse. To win, I must avoid. To control the pain I can control (aka the emotional pain), I avoid what causes that pain. That leaves me some energy left to deal with the pain I can't control. Go figure.
Thus, this place can be the place where my smile is always welcome, but I can also present things like they are. IF only I had the vocabulary!
In town, I smile at people on the street over the hard chin piece of my CTO jacket.
So what is up with that smile or the absence of dwelling on the pain and loss of way of life?
I can say honestly that that smile is not phony or a facade.
First of all, I have my faith. I am a strong believer in the Lord Jesus Christ. I believe He is God in the flesh, the only way to God ("I am the way, the Truth and the Life; no man cometh to the Father but by me" He said). Faith in Him is the number one thing that keeps me going. Faith that God has a plan.
I smile because I don't want anyone to feel sorry for me. For this same reason, if someone casually asks, "How are you?" I most often will say "Fine." What other words would do? What words would describe that deep invasive pervasive diffuse painfully OFF, out of kilter, not myself nor any other creature I know of? And the kind person inquiring, do they really want to know? Perhaps a few do...but for me, it's a smile and a "Fine." Somehow, I do feel a little more "fine" for having stated it.
I can smile because I know many others now so much worse off than I am. Who am I to complain? When you are a healthy cowgirl, all of your friends are healthy cowgirls, strong women who drive big trucks and throw bales and who pity the poor man who might try to hurt them. When you get hurt and become less than what you were, you suddenly find this whole community of hurting people out there, a social club no one wants to belong to. This is the beauty, in a strange, perverse way, of being injured. You come to know people you never would have encountered before. You have more time to get to know them. You can even relate more to them than to healthy people. So, I can smile because I know some folks who have it really bad!
This blog is the place for honesty, otherwise, what is the point? To a healthy person, this might seem like focusing on the bad, concentrating on the pain. But this is not what writing here is about.
To survive at all, I have learned instinctively to avoid. I'm the Queen of Avoidance. I avoid horses. I avoid songs and poems about horses. I had to put my dog to sleep a month ago, and I do not have his picture where I can see it. I avoid the pain I CAN avoid. That is pain I CAN control.
I've become like Miss Scarlett. "I won't think about that today. I'll think about it tomorrow, when I am stronger." If I start to think about the things I can't do anymore; if I stop to think about things worsening ("progressing" seems like an anti-meaning to the word. Progress is a good thang, Martha!); if I allow myself to "go there," then I lose. I would feel worse. To win, I must avoid. To control the pain I can control (aka the emotional pain), I avoid what causes that pain. That leaves me some energy left to deal with the pain I can't control. Go figure.
Thus, this place can be the place where my smile is always welcome, but I can also present things like they are. IF only I had the vocabulary!
Thursday, September 13, 2007
The words escape me
A longtime wordsmith, it bothers me so much that I can't describe what central nerve pain feels like.
Yes, I am back up tonight, again with central pain, this time in my feet, which I so often have. How to describe? The words allude me. Somewhat burning. But more like it's a burning aliveness, an offbeat throbbing but not exactly throbbing. Nerves on end, never ending, end to end, end all to end all, when will this ever end? It's not a stabbing, crying out kinda pain. It's a silent, still waters run deep kinda pain.
It cannot be ignored. It will not go away. There are no medications that seem to help.
I take Cymbalta which is for depression and also for nerve pain. Some people write that it helps a lot for that. I wonder what it does for me in that department. I could only find out by quitting it, and that's a thankless experiment I'll do without, thank you.
I talk to doctors and friends, trying to explain, believing, wrongly, that they actually want to know. That they might want to understand. With doctors, I hope they will fill in the blanks, but instead, they give me blank looks. I hope they will say, "Ah yes," as they thoughtfully chew on a pencil. "I've heard this aptly described before, it goes like this:"
But instead, I get looks of disinterest.
So, words do not exist for something so existential. No words are in the vocabulary for this sensation that erupts from the very core of our anatomical being. The Central Nervous System. Central to Life. Central to being. And when it is disrupted through spinal cord injury, it is wires-crossed, sparking and shorting out.
www.painonline.com gives a very intellectual look at CP. The following is from their site:
You cannot fit a square word into a round vocabulary.
_____________________________________________________________________
Insulting
by Elizabeth Mitchell
Let me introduce myself
I’m a very insulting person
You might not put me on that shelf
But trust me, you won’t meet a worse one
I offended my mate and keep doing it
My minister can hardly face seeing me
The parents who raised me frown “Please quit”
Citizens of the world hate nonsense, don’t we.
Well, ions overflow in channels
The acids get out of hand
Growth factors light burning hells
Can’t you see, don't you understand?
It won't work. I can't make it plain
They’re people, not chemical nerds
And my greatest insult was to central pain
to think I could frame it with words
A contest, a battle, Job’s awful game
and Nature’s hardest hit.
Stifled, my tongue finds terror and flame
But cannot speak a word of it
Humans can say how subtle is love
have language for piques and for teases
But only devils and God above
can be fluent in dysesthesias
Yes, I am back up tonight, again with central pain, this time in my feet, which I so often have. How to describe? The words allude me. Somewhat burning. But more like it's a burning aliveness, an offbeat throbbing but not exactly throbbing. Nerves on end, never ending, end to end, end all to end all, when will this ever end? It's not a stabbing, crying out kinda pain. It's a silent, still waters run deep kinda pain.
It cannot be ignored. It will not go away. There are no medications that seem to help.
I take Cymbalta which is for depression and also for nerve pain. Some people write that it helps a lot for that. I wonder what it does for me in that department. I could only find out by quitting it, and that's a thankless experiment I'll do without, thank you.
I talk to doctors and friends, trying to explain, believing, wrongly, that they actually want to know. That they might want to understand. With doctors, I hope they will fill in the blanks, but instead, they give me blank looks. I hope they will say, "Ah yes," as they thoughtfully chew on a pencil. "I've heard this aptly described before, it goes like this:"
But instead, I get looks of disinterest.
So, words do not exist for something so existential. No words are in the vocabulary for this sensation that erupts from the very core of our anatomical being. The Central Nervous System. Central to Life. Central to being. And when it is disrupted through spinal cord injury, it is wires-crossed, sparking and shorting out.
www.painonline.com gives a very intellectual look at CP. The following is from their site:
You cannot fit a square word into a round vocabulary.
_____________________________________________________________________
Insulting
by Elizabeth Mitchell
Let me introduce myself
I’m a very insulting person
You might not put me on that shelf
But trust me, you won’t meet a worse one
I offended my mate and keep doing it
My minister can hardly face seeing me
The parents who raised me frown “Please quit”
Citizens of the world hate nonsense, don’t we.
Well, ions overflow in channels
The acids get out of hand
Growth factors light burning hells
Can’t you see, don't you understand?
It won't work. I can't make it plain
They’re people, not chemical nerds
And my greatest insult was to central pain
to think I could frame it with words
A contest, a battle, Job’s awful game
and Nature’s hardest hit.
Stifled, my tongue finds terror and flame
But cannot speak a word of it
Humans can say how subtle is love
have language for piques and for teases
But only devils and God above
can be fluent in dysesthesias
Full moons remind me of Shadow
Shadow is now 16 years old. How does it happen that the horse I love so much is 900 miles away?
I got this 14.5 hand Pinto gelding when he was 4 years old. I'd bought him about a year earlier for a ranch we worked on. He was recovering from a bout of "shipping fever" and when I tried him out, he was one gentle horse! And he had a fast, ground-eating walk. I bought him, with ranch money, for $2000.
However, when I got him home and healthy, his true nature came through. Shadow was opinionated. He was a rascal and blatantly cantankerous. Stubborn? Hell, yes. I mean, he would NOT leave the barn with me on his back at first. He reared and reared and spun around and backed up and was spoiled rotten. One time, he skittered across the ranch road right in front of the boss in his car, totally out of control (the horse, not the boss!). I got him settled a bit and yelled out to Lou, "I'll keep ridin' him til he's worth what we paid for him!"
And I did. I also started hauling him up to trail-heads, unloading him, and riding him up challenging trails to high mountain lakes. It took about 3 years before I started to feel a bit proud of him. Before he'd cross a little stream of water willingly. But in the 12 years I owned him, he never lost his edge. Shadow challenged me in ways that eventually taught me to be a much better horsewoman than if I'd never met him.
A year after I bought him for the ranch, the ranch owners gave Shadow to me. Signed over his registration papers where his name is listed as "Kiko's White Shadow." Said, "He's been yours all along, but we're just making it official."
I used him alot "chasing cows." And other riders would always comment on the great little cowhorse I had. I knew he did not have a background of working cattle. But he liked "doing" and "going" and making cows do something they didn't want to do? Now that fit right into Shadow's idea of a fun time.
After six years on that ranch, we moved almost 1000 miles away to manage another ranch for six years. Shadow came along and added so much that was positive to the dynamic of the stable-full of horses. He gave confidence to the other horses as we led out trail rides. He was not afraid in any way of natural things, like deer popping out of the brush or a bobcat crossing our path. He'd been a thousand miles in the high country and he'd seen it all. And he trusted me. My confidence in him fed his confidence in me, and thus we nurtured that circle of trust together.
Full moons remind me of him. I remember jumping him over obstacles in the fields, stacked hay-bales and logs. Shadow never liked formal jumping. If it was a log to jump because we were on the tail of an errant, yearling steer, okay, now this was fun. In English tack and jumping for precision and depth of communication, he never cared for that. But he'd do it for me.
So often I'd not want to come in when the moon rose early in the east and the frogs started their cacophony in the river bottom. I'd want to keep jumping, under the moon, in the dim light when things look far different from reality and when your trust in your horse, and his in you, is put to the real test.
At other times when we'd have those October moons, I'd swing my cowboy riggin' on Shadow's back, we'd take off about 8 pm and ride up through the canyons, my fingers loosely holding the braided leather of my romal reins. My awesome horse eating up the road in his swinging walk, packing a heavy Sleister bit with ease. We'd climb through the tall brown grass and enter the secret world of the darkness abiding under tall oaks in the arroyos. Again, trust upon trust making the experience not one of fear but of exhilaration. Climbing up out of the dry wash to the ridgetop where the moon lights up the golden grass with an ethereal eeriness.
Then back down, past the grazing cows who barely look up, for Shadow is on his way home and his fast walk quickens even more. At the bottom, where the road forks and the commitment to go home, back to the ranch must be made, I yield to youthful impulse and say, "No, Shadow ol' boy, I'm not ready to give this up yet. There won't be another October moon like this for another twelve months!" and I rein him up the other road, away from the barn and stall with green hay awaiting. Shadow shows clearly his dislike for this decision, but he is a broke horse, and in seconds, he gives in to the notion, in his own mind clearly understanding that if he walks fast, even away from the barn, it will eventually get him home that much faster. Now, that is a smart horse!
With my injury, what I want and what I can do have become two different things. My neurosurgeon in New York who found that my C1 is still hugely broken told me, "To ride a horse is suicidal for you. If you fall off, you die."
Some people think they will ride til they die or until they are of such a ripe old age they cannot climb onto a horse's back. No matter what anyone might say. I used to think that. But after hearing this statement from a very smart man, I knew what I must do. I could disregard his warning and continue to ride, but first of all, since my injury, I have no strength to ride. Secondly, when I did ride, I always ended up feeling much worse and in bed for days.
And thirdly, I would not put my family through that. Horsemen know that if you ride, you fall off. Done deal. And if I fall off, I will die, according to my doctor, whom I do not believe would be melodramatic or insincere.
So, the last time I rode was in January of 2007. I'm glad that on that ride, whatever or wherever it was, I was not aware that it was my last one.
And Shadow stayed at the ranch we worked on when we gave in to disability and retirement and moved away in April. He has a great life and he is well-loved. He could not be better taken care of. But...will anyone ever again succumb to the moon and saddle him up and head for the dark canyons?
I got this 14.5 hand Pinto gelding when he was 4 years old. I'd bought him about a year earlier for a ranch we worked on. He was recovering from a bout of "shipping fever" and when I tried him out, he was one gentle horse! And he had a fast, ground-eating walk. I bought him, with ranch money, for $2000.
However, when I got him home and healthy, his true nature came through. Shadow was opinionated. He was a rascal and blatantly cantankerous. Stubborn? Hell, yes. I mean, he would NOT leave the barn with me on his back at first. He reared and reared and spun around and backed up and was spoiled rotten. One time, he skittered across the ranch road right in front of the boss in his car, totally out of control (the horse, not the boss!). I got him settled a bit and yelled out to Lou, "I'll keep ridin' him til he's worth what we paid for him!"
And I did. I also started hauling him up to trail-heads, unloading him, and riding him up challenging trails to high mountain lakes. It took about 3 years before I started to feel a bit proud of him. Before he'd cross a little stream of water willingly. But in the 12 years I owned him, he never lost his edge. Shadow challenged me in ways that eventually taught me to be a much better horsewoman than if I'd never met him.
A year after I bought him for the ranch, the ranch owners gave Shadow to me. Signed over his registration papers where his name is listed as "Kiko's White Shadow." Said, "He's been yours all along, but we're just making it official."
I used him alot "chasing cows." And other riders would always comment on the great little cowhorse I had. I knew he did not have a background of working cattle. But he liked "doing" and "going" and making cows do something they didn't want to do? Now that fit right into Shadow's idea of a fun time.
After six years on that ranch, we moved almost 1000 miles away to manage another ranch for six years. Shadow came along and added so much that was positive to the dynamic of the stable-full of horses. He gave confidence to the other horses as we led out trail rides. He was not afraid in any way of natural things, like deer popping out of the brush or a bobcat crossing our path. He'd been a thousand miles in the high country and he'd seen it all. And he trusted me. My confidence in him fed his confidence in me, and thus we nurtured that circle of trust together.
Full moons remind me of him. I remember jumping him over obstacles in the fields, stacked hay-bales and logs. Shadow never liked formal jumping. If it was a log to jump because we were on the tail of an errant, yearling steer, okay, now this was fun. In English tack and jumping for precision and depth of communication, he never cared for that. But he'd do it for me.
So often I'd not want to come in when the moon rose early in the east and the frogs started their cacophony in the river bottom. I'd want to keep jumping, under the moon, in the dim light when things look far different from reality and when your trust in your horse, and his in you, is put to the real test.
At other times when we'd have those October moons, I'd swing my cowboy riggin' on Shadow's back, we'd take off about 8 pm and ride up through the canyons, my fingers loosely holding the braided leather of my romal reins. My awesome horse eating up the road in his swinging walk, packing a heavy Sleister bit with ease. We'd climb through the tall brown grass and enter the secret world of the darkness abiding under tall oaks in the arroyos. Again, trust upon trust making the experience not one of fear but of exhilaration. Climbing up out of the dry wash to the ridgetop where the moon lights up the golden grass with an ethereal eeriness.
Then back down, past the grazing cows who barely look up, for Shadow is on his way home and his fast walk quickens even more. At the bottom, where the road forks and the commitment to go home, back to the ranch must be made, I yield to youthful impulse and say, "No, Shadow ol' boy, I'm not ready to give this up yet. There won't be another October moon like this for another twelve months!" and I rein him up the other road, away from the barn and stall with green hay awaiting. Shadow shows clearly his dislike for this decision, but he is a broke horse, and in seconds, he gives in to the notion, in his own mind clearly understanding that if he walks fast, even away from the barn, it will eventually get him home that much faster. Now, that is a smart horse!
With my injury, what I want and what I can do have become two different things. My neurosurgeon in New York who found that my C1 is still hugely broken told me, "To ride a horse is suicidal for you. If you fall off, you die."
Some people think they will ride til they die or until they are of such a ripe old age they cannot climb onto a horse's back. No matter what anyone might say. I used to think that. But after hearing this statement from a very smart man, I knew what I must do. I could disregard his warning and continue to ride, but first of all, since my injury, I have no strength to ride. Secondly, when I did ride, I always ended up feeling much worse and in bed for days.
And thirdly, I would not put my family through that. Horsemen know that if you ride, you fall off. Done deal. And if I fall off, I will die, according to my doctor, whom I do not believe would be melodramatic or insincere.
So, the last time I rode was in January of 2007. I'm glad that on that ride, whatever or wherever it was, I was not aware that it was my last one.
And Shadow stayed at the ranch we worked on when we gave in to disability and retirement and moved away in April. He has a great life and he is well-loved. He could not be better taken care of. But...will anyone ever again succumb to the moon and saddle him up and head for the dark canyons?
Oh, this feeling of being so "off"
I woke up this morning at 6 am and as usual, I sit in my recliner deciding if I feel bad enough to take a pain med. Some people say it's best to take pain meds on a schedule. Patients, I mean. But I try to figure out how I am feeling first. Almost always, I feel terrible and end up caving in and taking one...tho two days ago I felt so good I didn't take one until noon.
But today, oh the horrible feeling in my brain of feeling off. Like all my circuitry is mixed up and misfiring and connections are not being made. Back of my head is painful, bottoms of feet have a strange sensation, I feel such generalized fatigue and weakness. Again, the old truck analogy just seems the best. But it's so hard when you can't think straight.
Someone reported on CCI that when they had the extraction fusion (which I am slated to have early next year) that their thinking really cleared up. I am so hopeful when I think of this.
I've also read about these surgeries that you will know it's time to have them when you get the feeling that you can't live without them. I'm at that point. For a long time, I've gone back and forth about proceeding with surgery, but now, I worry about having to wait.
But today, oh the horrible feeling in my brain of feeling off. Like all my circuitry is mixed up and misfiring and connections are not being made. Back of my head is painful, bottoms of feet have a strange sensation, I feel such generalized fatigue and weakness. Again, the old truck analogy just seems the best. But it's so hard when you can't think straight.
Someone reported on CCI that when they had the extraction fusion (which I am slated to have early next year) that their thinking really cleared up. I am so hopeful when I think of this.
I've also read about these surgeries that you will know it's time to have them when you get the feeling that you can't live without them. I'm at that point. For a long time, I've gone back and forth about proceeding with surgery, but now, I worry about having to wait.
Wednesday, September 12, 2007
Observing others turning their heads...
Those of you reading this who have already had the fusion, or perhaps have a broken neck, know what I mean. While watching TV, I see a lady fling her long hair this way and that, and I think, "I'll never do that again!" Ha! Or someone wrenches their heads upwards quickly to look at something in the sky, and I think of how badly THAT would hurt if I tried that!
I notice this in people on the street, too. When I see people doing natural movements with their heads and necks, it seems to jump right out at me! It's okay that I'll never twist my neck like that again, that's not that hard of a thing to give up, compared to other things, but it's just something I notice, one of those little, seemingly insignificant things that I used to take for granted before I broke my neck.
And it reminds me to not take for granted the fact that I can walk (even if only for a few yards) and talk. Everything is relative and we all know someone worse off than we are. I'm not writing this blog to complain or whine about anything. I know I'm blessed and I'm a walking, talking miracle on earth! I praise my Lord for that every day. I am just writing here to record the journey, and to give some background.
I notice this in people on the street, too. When I see people doing natural movements with their heads and necks, it seems to jump right out at me! It's okay that I'll never twist my neck like that again, that's not that hard of a thing to give up, compared to other things, but it's just something I notice, one of those little, seemingly insignificant things that I used to take for granted before I broke my neck.
And it reminds me to not take for granted the fact that I can walk (even if only for a few yards) and talk. Everything is relative and we all know someone worse off than we are. I'm not writing this blog to complain or whine about anything. I know I'm blessed and I'm a walking, talking miracle on earth! I praise my Lord for that every day. I am just writing here to record the journey, and to give some background.
Will have to wait a little longer
I talked to my nurse at TCI today, and she said they did not get my urodynamics test results at all. I kind of knew that the urologist was sending it to the wrong address. But I had sent them myself 2 weeks ago. So, she called back to say she found them, and my doctor will review them probably next Monday, Sept. 17 and it could take a week to find out if Dr. B does want me to have the Tethered Cord release surgery.
Last night, I was awakened at 2 am by such pervasive burning pain below the waist all the way to my toes. I got up and took a pain pill and then sat up reading for a couple of hours. I think the tethered cord symptoms are getting much worse, and as anyone who has "been there, done that" knows, when you see progression with spinal cord injury, it's a bit scary. I have faith, however, and know the God has a plan. All things will fall into the place at the right time!
Last night, I was awakened at 2 am by such pervasive burning pain below the waist all the way to my toes. I got up and took a pain pill and then sat up reading for a couple of hours. I think the tethered cord symptoms are getting much worse, and as anyone who has "been there, done that" knows, when you see progression with spinal cord injury, it's a bit scary. I have faith, however, and know the God has a plan. All things will fall into the place at the right time!
Tuesday, September 11, 2007
My upcoming surgical plan
Right now, I am having monthly IV drip infusion treatments of pamidronate for a total of six months. When this is done, my surgeon at The Chiari Institute in NY will do the craniocervical fusion necessary to finally stabilize my head and neck. This surgery means there will be rods placed on the back of my skull, under the scalp, and there permanently, and they will travel down the C spine to about C4 or C5.
At the Chiari Institute, they extract the head and neck upwards to align the spine and put things back into place before they fuse you. However, if you have Tethered Cord Syndrome (TCS),
they have found it is counter productive to pull up in the cervical traction and then fuse while your spinal cord is still tethered.
My surgeon has reported that I have TCS. Thus, I must have the spinal cord detethered before I can have the long-awaited fusion done.
So, the plan is this:
Go to The Chiari Institute, hopefully soon.
Have the ICT (Invasive Cervical Traction) which will determine how much my neck needs to be
extracted upwards.
Next day, have the TCS surgery done.
Go home for 3 months.
Then go back, hopefully in Feb. of 08, to have the craniocervical fusion done.
Then, wear a halo for 3 months.
I am right now awaiting the firm decision by my surgeon, Dr. Bolognese, that we will be proceeding with the TCS surgery. I am hoping that the decision is yes. My feet have been so painful for so long, and continue to get worse. Also, my legs are painful and very weak. I have heard the TCS surgery will really help to lessen these symptoms.
It seems that when I suffered spinal cord injury from my horse wreck/Jefferson frx, this injury also affected a congenital condition (but unknown to me) of TCS.
At the Chiari Institute, they extract the head and neck upwards to align the spine and put things back into place before they fuse you. However, if you have Tethered Cord Syndrome (TCS),
they have found it is counter productive to pull up in the cervical traction and then fuse while your spinal cord is still tethered.
My surgeon has reported that I have TCS. Thus, I must have the spinal cord detethered before I can have the long-awaited fusion done.
So, the plan is this:
Go to The Chiari Institute, hopefully soon.
Have the ICT (Invasive Cervical Traction) which will determine how much my neck needs to be
extracted upwards.
Next day, have the TCS surgery done.
Go home for 3 months.
Then go back, hopefully in Feb. of 08, to have the craniocervical fusion done.
Then, wear a halo for 3 months.
I am right now awaiting the firm decision by my surgeon, Dr. Bolognese, that we will be proceeding with the TCS surgery. I am hoping that the decision is yes. My feet have been so painful for so long, and continue to get worse. Also, my legs are painful and very weak. I have heard the TCS surgery will really help to lessen these symptoms.
It seems that when I suffered spinal cord injury from my horse wreck/Jefferson frx, this injury also affected a congenital condition (but unknown to me) of TCS.
Diagnoses
Up until I fell from the horse in April, 2004, the only diagnosis I had was osteoporosis. I had never had a surgery except a tonsillectomy when I was 8 years old. I was strong and healthy as the proverbial...well...horse.
Since then, these are my diagnoses:
Osteoporosis
Jefferson Fracture (4 place frx of the C1) resulting in
Craniocervical Instability
Tethered Spinal cord
My skull has rotated backward and come to rest on the posterior of my C1, where there should
be the width of a pinky finger separating the two. I guess there is no name for this.
Post Traumatic Stress Disorder
Post Concussion Syndrome
Mild Traumatic Brain Injury
Monoclonal Gammopathy, a pre-condition to multiple myeloma
Mild carpal tunnel in the right wrist
Glossopharyngeal nerve damage
Mild mitral valve prolapse/stenosis
Since then, these are my diagnoses:
Osteoporosis
Jefferson Fracture (4 place frx of the C1) resulting in
Craniocervical Instability
Tethered Spinal cord
My skull has rotated backward and come to rest on the posterior of my C1, where there should
be the width of a pinky finger separating the two. I guess there is no name for this.
Post Traumatic Stress Disorder
Post Concussion Syndrome
Mild Traumatic Brain Injury
Monoclonal Gammopathy, a pre-condition to multiple myeloma
Mild carpal tunnel in the right wrist
Glossopharyngeal nerve damage
Mild mitral valve prolapse/stenosis
me and horses...today
I know there are many, many people who loved and worked with horses all of their lives, and when they became unable to ride for whatever reason, they continue on with whatever they can do with these alluring animals.
I worked with horses for over 40 years. Pete and I counted up today all of the horses we've owned, and there were over 40. My life was pretty much consumed by them. Then, my injury took away my ability to ride and to even be around horses.
Do I read about them now? No.
Do I watch shows on TV about them now? No.
Do I write about them? No.
All of our artwork in our home is horse-related. No matter what I look at, I see horses.
But they have lost their life for me. I am not drawn to them anymore. In fact, I avoid them.
Pete, years ago, bought me a beautiful, silver-engraved snaffle bit, saying, "Every good horse trainer deserves a good training bit." I still have this bit. When I look at it, I remember how Pete surprised me with it. That remembrance warms me. But it also reminds me of something I can't do anymore. So, I want to sell it. Get rid of it.
In one of the rooms of our new home, there is a row of hooks from which hang our chaps, chinks, bridles and spurs. They have a long wait ahead of them, if they are waiting to be taken down, strapped on, ready for a hard day's work.
I don't go to horse shows. I do get lured back into my old life when I find myself talking with horse people. We talk about training and all of what took me a lifetime to learn comes bubbling forth from my heart and from my lips. But when THEY turn to go, they have horses to train and ride. I turn away, buckle on my CTO vest, get in the truck and Pete drives me home.
I LOVE my life now and my new home. And in order to survive, I don't think about horses. Until I lie awake before sleep, and then I think of the minute movement of my right little finger and the barely perceptible sliding back of my left heel as I nudge my horse into a right lead, collect him by sitting deeper, melding into his back, my eyes up and looking forward into the future, where I'm headed. Where I was headed.
40 horses. 40 years. Why would I be so bold, so greedy to think I deserve more?
I worked with horses for over 40 years. Pete and I counted up today all of the horses we've owned, and there were over 40. My life was pretty much consumed by them. Then, my injury took away my ability to ride and to even be around horses.
Do I read about them now? No.
Do I watch shows on TV about them now? No.
Do I write about them? No.
All of our artwork in our home is horse-related. No matter what I look at, I see horses.
But they have lost their life for me. I am not drawn to them anymore. In fact, I avoid them.
Pete, years ago, bought me a beautiful, silver-engraved snaffle bit, saying, "Every good horse trainer deserves a good training bit." I still have this bit. When I look at it, I remember how Pete surprised me with it. That remembrance warms me. But it also reminds me of something I can't do anymore. So, I want to sell it. Get rid of it.
In one of the rooms of our new home, there is a row of hooks from which hang our chaps, chinks, bridles and spurs. They have a long wait ahead of them, if they are waiting to be taken down, strapped on, ready for a hard day's work.
I don't go to horse shows. I do get lured back into my old life when I find myself talking with horse people. We talk about training and all of what took me a lifetime to learn comes bubbling forth from my heart and from my lips. But when THEY turn to go, they have horses to train and ride. I turn away, buckle on my CTO vest, get in the truck and Pete drives me home.
I LOVE my life now and my new home. And in order to survive, I don't think about horses. Until I lie awake before sleep, and then I think of the minute movement of my right little finger and the barely perceptible sliding back of my left heel as I nudge my horse into a right lead, collect him by sitting deeper, melding into his back, my eyes up and looking forward into the future, where I'm headed. Where I was headed.
40 horses. 40 years. Why would I be so bold, so greedy to think I deserve more?
Going to town in a CTO vest
I posted this a few weeks ago on the CCI site:
Everywhere, people look or stare. I always smile back, over the rigid chin-frame of the Aspen collar built into the vest. This probably looks idiotic, but I feel guilty if people feel sorry for me. I want to alleviate their discomfort with the situation, so I smile, a big toothy grin, no matter how bad I am feeling.
We park in front of the clinic and while I wait in the truck, on the passenger side, a neighbor stops to say hi. Again, imprisoned in a fashion which only allows me to look forward, I slide my eyes painfully to the right to see who is approaching the truck. He is in his mid-20's and it's nice of him to stop to say hi. But he stands opposite my right shoulder, so I cannot see him at all. I wonder if he is doing that because if he stood straight ahead of me, I could see his discomfort with the situation.
Entering the grocery store, an elderly woman holds the door open forme. I feel odd about this. I know she is being kind and thoughtful,but I am 30 years younger than she is, and that briefly saddens me.Walking down one of the aisles in the market, a man is standing in the middle of the aisle. He is concentrating on some product on a lower shelf. I want to get past him by walking behind him, that way he wouldn't see my vest and I wouldn't see his understandable "double-take." But he is too close on that side of the aisle, so I must cross in front of him, and just ignore his looks.
At the Post Office, people hold the doors open for me, and allow me to go first in line. I smile again, as always, not wanting to cause any sympathy. It feels important to me that they do NOT feel sorry for me, and I don't know why.We live in a small town, so people here feel free to ask, "That looks restrictive. How long must you wear that?" "What happened to you?" I always give honest answers, wanting to educate them about a Jefferson fracture, the importance of wearing a helmet while horseback riding, about the wonderful doctor in NY who took the time to find out that my C1 is still broken even after 3.5 years. Thus, a quick run into the building to check the mail will always last 15 minutes or more. My husband, who drives for me because I cannot look right and left in a CTO vest, has learned to be very patient.
Little kids always stare, and often ask questions. I have found thatI am not yet capable of making this an educational experience. None of my answers quite satisfy a curious child. There are always more questions. Some have suggested that I just tell kids that I'm a super-hero, but frankly, I don't feel very gallant or possessing of super-human powers. It's always the hardest with little kids...but I've become pretty good at just ignoring them, too.
At the gas station, we end up parked at the pump facing directly toward another car there to fill up on "cheap" $2.75 per gallon fuel. The driver must have no social skills, because he stares at me the whole time. I could smile and wave at him, but by this time, I am too weak, and I don't care. If he doesn't care how I feel when he stares, then I don't care if he's feeling sorry for me or not. Somehow, I don't think that he is.
On top of an all-consuming sense of being painfully, neurologically off; on top of constant neck pain and a CTO vest that gives me a sense of choking, claustrophobia at times; on top of feet that don't feel the ground and arms that burn and itch and suffer lancinating pains, there is this facet of dealing with a well-meaning public. Like anyone dealing with a deformity, I would guess, it can be tiresome, funny, or embarrassing at varying times. I am blessed that I can take off my "deformity" when I get home. In about six months, after my fusion at TCI, I will be wearing a halof or 3 months. I should be well-practiced by then about how to handle those I see when out in the public.
Everywhere, people look or stare. I always smile back, over the rigid chin-frame of the Aspen collar built into the vest. This probably looks idiotic, but I feel guilty if people feel sorry for me. I want to alleviate their discomfort with the situation, so I smile, a big toothy grin, no matter how bad I am feeling.
We park in front of the clinic and while I wait in the truck, on the passenger side, a neighbor stops to say hi. Again, imprisoned in a fashion which only allows me to look forward, I slide my eyes painfully to the right to see who is approaching the truck. He is in his mid-20's and it's nice of him to stop to say hi. But he stands opposite my right shoulder, so I cannot see him at all. I wonder if he is doing that because if he stood straight ahead of me, I could see his discomfort with the situation.
Entering the grocery store, an elderly woman holds the door open forme. I feel odd about this. I know she is being kind and thoughtful,but I am 30 years younger than she is, and that briefly saddens me.Walking down one of the aisles in the market, a man is standing in the middle of the aisle. He is concentrating on some product on a lower shelf. I want to get past him by walking behind him, that way he wouldn't see my vest and I wouldn't see his understandable "double-take." But he is too close on that side of the aisle, so I must cross in front of him, and just ignore his looks.
At the Post Office, people hold the doors open for me, and allow me to go first in line. I smile again, as always, not wanting to cause any sympathy. It feels important to me that they do NOT feel sorry for me, and I don't know why.We live in a small town, so people here feel free to ask, "That looks restrictive. How long must you wear that?" "What happened to you?" I always give honest answers, wanting to educate them about a Jefferson fracture, the importance of wearing a helmet while horseback riding, about the wonderful doctor in NY who took the time to find out that my C1 is still broken even after 3.5 years. Thus, a quick run into the building to check the mail will always last 15 minutes or more. My husband, who drives for me because I cannot look right and left in a CTO vest, has learned to be very patient.
Little kids always stare, and often ask questions. I have found thatI am not yet capable of making this an educational experience. None of my answers quite satisfy a curious child. There are always more questions. Some have suggested that I just tell kids that I'm a super-hero, but frankly, I don't feel very gallant or possessing of super-human powers. It's always the hardest with little kids...but I've become pretty good at just ignoring them, too.
At the gas station, we end up parked at the pump facing directly toward another car there to fill up on "cheap" $2.75 per gallon fuel. The driver must have no social skills, because he stares at me the whole time. I could smile and wave at him, but by this time, I am too weak, and I don't care. If he doesn't care how I feel when he stares, then I don't care if he's feeling sorry for me or not. Somehow, I don't think that he is.
On top of an all-consuming sense of being painfully, neurologically off; on top of constant neck pain and a CTO vest that gives me a sense of choking, claustrophobia at times; on top of feet that don't feel the ground and arms that burn and itch and suffer lancinating pains, there is this facet of dealing with a well-meaning public. Like anyone dealing with a deformity, I would guess, it can be tiresome, funny, or embarrassing at varying times. I am blessed that I can take off my "deformity" when I get home. In about six months, after my fusion at TCI, I will be wearing a halof or 3 months. I should be well-practiced by then about how to handle those I see when out in the public.
Tuesday, Sept. 11
Strange thing happened today. Every morning, I wake up feeling like the proverbial truck has run over me ("did you get the number off that truck?") but today, out of nowhere, I felt oddly ... well, normal! It was great and it's also fascinating to me that I still remember what normal feels like! I didn't have any neurological pain at all.
It only lasted three hours, then the truck realised it had forgotten to make its morning stop at my house, and came back to do its job. But those three hours, it felt great to feel pretty good.
Went shopping, wearing my CTO vest (cervical thoracic orthotic, which I must wear in the car/truck. It is the reason I had to stop driving. I haven't driven since Feb. when I got this vest/jacket). Again, ignoring the looks of people and children as they notice my predicament.
It only lasted three hours, then the truck realised it had forgotten to make its morning stop at my house, and came back to do its job. But those three hours, it felt great to feel pretty good.
Went shopping, wearing my CTO vest (cervical thoracic orthotic, which I must wear in the car/truck. It is the reason I had to stop driving. I haven't driven since Feb. when I got this vest/jacket). Again, ignoring the looks of people and children as they notice my predicament.
Monday, September 10, 2007
So, how did this all happen?
April 9, 2004, Good Friday
Paso Robles, CA
Even if I had not told this story many, many times (especially to various specialists!), I would never forget this day. Changed my life? Heck yes. In fact, I felt like in the blink of an eye, I switched my life for someone else's.
What a spring we had that year! The weather was deliriously beautiful. I remember riding horseback through the hills of the ranch, the grass was so tall and green, especially under the oak trees where it had been watered by drops of heavy dew falling from the branches.
I had four horses to keep ridden and trained. Jedi, a big, tall, dark-brown and white paint gelding. Duke, a nice little sorrel Quarter Horse. Dennis, an old campaigner who really didn't need much riding, just enough to keep his muscles loose. And of course, my horse, Shadow. I'll write more about Shadow in another post.
I rode, at this time, mostly English, loving the freedom of the lightness of the saddle and the reward of being close and balanced with the horse.
That spring, I found a mystical new canyon which I named Dead Calf Canyon because of the carcass I found lying along the dry creek bank. Each time I passed the bones and stretched hide, I'd see the evidence of ongoing play and chewing on the part of local coyotes. Soon, the skull would be way down the canyon, while a leg bone would have been dragged north. I could tell what the calf died of from the chewed[up ball of hay twine that lay on the sand near the throat area. He choked and died from his own curiosity.
Wild pigs would startle my horse as they raced on ahead down narrow gulches, and I'd spur forward to chase them, yelling like a wild banshee to scare the destructive pigs from the ranch. I remember telling my sister in NH about doing this and she wrote back, "You and I sure do lead different lives!"
But those halcyon days were nothing different for me and the way my life went. Working on ranches, training horses for over 30 years, this was just status quo and yet, I never took it for granted.
One day in early 2004, I remember riding up Bobcat Canyon and seeing a bobcat crouching up ahead on a hill. I stopped my horse. The bobcat crouched, trying to become invisible. Shadow stomped his impatience to either be on our way or to go home to the ranch. When the cat realised that I'd seen her, but did not intend any harm, she turned and slinked up a deer trail. I put Shadow right on that track like someone in NY grabbing a taxi and yelling, "Follow that cab!"
That was what my days were like. And jumping. Oh, how I loved jumping and I was riding a horse, Jedi, who loved it too. We had a lot of jumping to do in order to ever become the team I envisioned we'd be. I knew that. So, I saddled up Jedi several times a week and we either worked in the arena near the stables on the ranch, or we'd go out and canter over some jumps I'd set up outside in various places, or we'd go find some logs to jump in the hills. I was feeling very confident of Jedi and I trusted him. He was improving in all of his work, even his dressage work. His owner was very enthusiastic with the big horse I'd just bought him six months before.
So, on one of those specious days, I saddled up Jedi with every intent to do as I'd done most days. We warmed up in the arena, and then we went for a nice little trail ride. I remember thinking how blessed I was to be in that space in time. I remember thinking, though it probably wasn't that exact day, that if Saddam Hussein and all the other tyrants of the world could just come ride with me through this lush, green grass on these enchanted hills, they would see all that was right with the world and peace would prevail.
I had two jumps set up near the house. They were "related distances," meaning that they were close enough that a certain number of strides from the horse would fit between the two fences. They were set at about 3'3" tall. The second was an oxer (made with two fences beside each other, an oxer is wider than a single, vertical jump).
I cantered Jedi over the first jump, no problem. As he reached the perfect take off spot in front of the oxer, he "ran out." He avoided the jump by running to the side. But he was honest about it, I could handle it, so I spanked him lightly with the crop, letting him know that this was not acceptable, and then I circled him back around between the two jumps and cantered him back strongly to the oxer again. He jumped with a huge pop. But it was fun, freeing, exhilirating and my heart silently sang.
We landed in the correct lead and then circled back around the sumacs toward the oxer again. I thought that it felt SO good, we just had to do it again and besides, it would reinforce in Jedi's brain that he had to go forward over jumps.
Everything was smooth. Nothing felt wrong. He had just jumped this jump, I had no reason to believe he wouldn't do it now. I rode him strongly forward with my legs on his sides to show him there was no doubt about what I wanted him to do. I let my right hand bring the crop up just high enough out to the side so that his right eye could see it, and he'd know: Go forward.
The last thing I remember is him stopping hard and my body tilting forward over the pommel of the English saddle. I don't remember crashing through the fence rails, I don't remember hitting my head, I don't recall how I landed, or seeing stars, or the pain of striking the ground.
[I have learned since that when someone loses consciousness, there is often no recollection of the events immediately leading up to blacking out. The brain needs time to file events into memory, and when events happen but then instantly the brain is unconscious, it has not had the time to input the event into the memory. Thus, family and friends should not try to get someone to remember what led up to the injury/loss of consciousness. It is not amnesia. It is simply not there because the brain did not have time to file it. In my case, I will never know certain things, because I was out there training the horse all alone. No one observed the wreck. And my brain never recorded it.]
The next thing to come to my awareness was that I was on the ground in some position, just what, I do not recall. Any horseman knows that you are often injured and when you are, the first thing you do is assess the damages. What is broken, if anything?
But I felt electricity zinging through my extremities. I feared this meant paralysis, so I called out to God, "Please don't let me be paralyzed! Please don't let me be paralyzed!" At that time, I was not thinking broken neck, or landing on my head or passing out. I was only "in the moment." The things going on were enough to fill my brain.
I got up somehow onto my hands and knees. I must have taken off my riding helmet at that time and my bent-up glasses. And I realised that my neck could not hold the weight of my head one iota. I don't think, as I think back now (and the many times I've told this story) that I was aware at the time that my neck was broken. Just DEALING WITH IT, all alone, filled my mind.
I stood up, but had to bend over at the waist and let my head hang down. There was simply nothing that was going to hold my head up. Not muscles or ligaments and certainly not my spine.
I saw Jedi nearby, head down and grazing on dried grass. Fearing that he'd step through his reins, I walked over to him, took the reins over his head, and tugged at them to get him to follow me. The tugging of the reins sent such pain through to my neck! But he came along with me and I walked him, me bent over at the waist, head hanging down, the couple of hundred feet to the door of my house.
The door was under the carport, and just the day before, I had led Jedi under the carport and past that door for the first time, proudly telling Pete, "See how much he trusts me! He'll follow me right through this scary stuff!"
So, I had confidence that he would follow me right up to the door, which I opened and called to Pete inside to come help me. When he heard me and came to the door, I said, "I have to go to the hospital. Jedi stopped in front of a jump and I fell off and I'm really hurt."
Pete asked, "What do you want me to do first?" And I said, "Put the horse away for me."
He took the reins, and I went into the house and sat down in an old chair in the kitchen. I wondered if I should wait 'til he returned, and he could take me to the ER himself. Or wait and he could call the ambulance. I sat there with my head hanging down between my knees and in a great lot of pain. I realised that I could not climb into the truck and endure the ride to the ER. And I could not wait for Pete to come back, so I struggled up and into the office and dialed 911. Something I had never done for myself. My first ride in an ambulance. I told the woman, "I fell off my horse and need an ambulance." I am not sure, but I might have told her I thought I'd broken my neck. But I'm not sure. I don't seem to have a remembrance of exactly when I learned for sure that my neck had broken. Maybe I instinctively knew it from the get go.
More about the ambulance ride and the hospital stay in another post.
Paso Robles, CA
Even if I had not told this story many, many times (especially to various specialists!), I would never forget this day. Changed my life? Heck yes. In fact, I felt like in the blink of an eye, I switched my life for someone else's.
What a spring we had that year! The weather was deliriously beautiful. I remember riding horseback through the hills of the ranch, the grass was so tall and green, especially under the oak trees where it had been watered by drops of heavy dew falling from the branches.
I had four horses to keep ridden and trained. Jedi, a big, tall, dark-brown and white paint gelding. Duke, a nice little sorrel Quarter Horse. Dennis, an old campaigner who really didn't need much riding, just enough to keep his muscles loose. And of course, my horse, Shadow. I'll write more about Shadow in another post.
I rode, at this time, mostly English, loving the freedom of the lightness of the saddle and the reward of being close and balanced with the horse.
That spring, I found a mystical new canyon which I named Dead Calf Canyon because of the carcass I found lying along the dry creek bank. Each time I passed the bones and stretched hide, I'd see the evidence of ongoing play and chewing on the part of local coyotes. Soon, the skull would be way down the canyon, while a leg bone would have been dragged north. I could tell what the calf died of from the chewed[up ball of hay twine that lay on the sand near the throat area. He choked and died from his own curiosity.
Wild pigs would startle my horse as they raced on ahead down narrow gulches, and I'd spur forward to chase them, yelling like a wild banshee to scare the destructive pigs from the ranch. I remember telling my sister in NH about doing this and she wrote back, "You and I sure do lead different lives!"
But those halcyon days were nothing different for me and the way my life went. Working on ranches, training horses for over 30 years, this was just status quo and yet, I never took it for granted.
One day in early 2004, I remember riding up Bobcat Canyon and seeing a bobcat crouching up ahead on a hill. I stopped my horse. The bobcat crouched, trying to become invisible. Shadow stomped his impatience to either be on our way or to go home to the ranch. When the cat realised that I'd seen her, but did not intend any harm, she turned and slinked up a deer trail. I put Shadow right on that track like someone in NY grabbing a taxi and yelling, "Follow that cab!"
That was what my days were like. And jumping. Oh, how I loved jumping and I was riding a horse, Jedi, who loved it too. We had a lot of jumping to do in order to ever become the team I envisioned we'd be. I knew that. So, I saddled up Jedi several times a week and we either worked in the arena near the stables on the ranch, or we'd go out and canter over some jumps I'd set up outside in various places, or we'd go find some logs to jump in the hills. I was feeling very confident of Jedi and I trusted him. He was improving in all of his work, even his dressage work. His owner was very enthusiastic with the big horse I'd just bought him six months before.
So, on one of those specious days, I saddled up Jedi with every intent to do as I'd done most days. We warmed up in the arena, and then we went for a nice little trail ride. I remember thinking how blessed I was to be in that space in time. I remember thinking, though it probably wasn't that exact day, that if Saddam Hussein and all the other tyrants of the world could just come ride with me through this lush, green grass on these enchanted hills, they would see all that was right with the world and peace would prevail.
I had two jumps set up near the house. They were "related distances," meaning that they were close enough that a certain number of strides from the horse would fit between the two fences. They were set at about 3'3" tall. The second was an oxer (made with two fences beside each other, an oxer is wider than a single, vertical jump).
I cantered Jedi over the first jump, no problem. As he reached the perfect take off spot in front of the oxer, he "ran out." He avoided the jump by running to the side. But he was honest about it, I could handle it, so I spanked him lightly with the crop, letting him know that this was not acceptable, and then I circled him back around between the two jumps and cantered him back strongly to the oxer again. He jumped with a huge pop. But it was fun, freeing, exhilirating and my heart silently sang.
We landed in the correct lead and then circled back around the sumacs toward the oxer again. I thought that it felt SO good, we just had to do it again and besides, it would reinforce in Jedi's brain that he had to go forward over jumps.
Everything was smooth. Nothing felt wrong. He had just jumped this jump, I had no reason to believe he wouldn't do it now. I rode him strongly forward with my legs on his sides to show him there was no doubt about what I wanted him to do. I let my right hand bring the crop up just high enough out to the side so that his right eye could see it, and he'd know: Go forward.
The last thing I remember is him stopping hard and my body tilting forward over the pommel of the English saddle. I don't remember crashing through the fence rails, I don't remember hitting my head, I don't recall how I landed, or seeing stars, or the pain of striking the ground.
[I have learned since that when someone loses consciousness, there is often no recollection of the events immediately leading up to blacking out. The brain needs time to file events into memory, and when events happen but then instantly the brain is unconscious, it has not had the time to input the event into the memory. Thus, family and friends should not try to get someone to remember what led up to the injury/loss of consciousness. It is not amnesia. It is simply not there because the brain did not have time to file it. In my case, I will never know certain things, because I was out there training the horse all alone. No one observed the wreck. And my brain never recorded it.]
The next thing to come to my awareness was that I was on the ground in some position, just what, I do not recall. Any horseman knows that you are often injured and when you are, the first thing you do is assess the damages. What is broken, if anything?
But I felt electricity zinging through my extremities. I feared this meant paralysis, so I called out to God, "Please don't let me be paralyzed! Please don't let me be paralyzed!" At that time, I was not thinking broken neck, or landing on my head or passing out. I was only "in the moment." The things going on were enough to fill my brain.
I got up somehow onto my hands and knees. I must have taken off my riding helmet at that time and my bent-up glasses. And I realised that my neck could not hold the weight of my head one iota. I don't think, as I think back now (and the many times I've told this story) that I was aware at the time that my neck was broken. Just DEALING WITH IT, all alone, filled my mind.
I stood up, but had to bend over at the waist and let my head hang down. There was simply nothing that was going to hold my head up. Not muscles or ligaments and certainly not my spine.
I saw Jedi nearby, head down and grazing on dried grass. Fearing that he'd step through his reins, I walked over to him, took the reins over his head, and tugged at them to get him to follow me. The tugging of the reins sent such pain through to my neck! But he came along with me and I walked him, me bent over at the waist, head hanging down, the couple of hundred feet to the door of my house.
The door was under the carport, and just the day before, I had led Jedi under the carport and past that door for the first time, proudly telling Pete, "See how much he trusts me! He'll follow me right through this scary stuff!"
So, I had confidence that he would follow me right up to the door, which I opened and called to Pete inside to come help me. When he heard me and came to the door, I said, "I have to go to the hospital. Jedi stopped in front of a jump and I fell off and I'm really hurt."
Pete asked, "What do you want me to do first?" And I said, "Put the horse away for me."
He took the reins, and I went into the house and sat down in an old chair in the kitchen. I wondered if I should wait 'til he returned, and he could take me to the ER himself. Or wait and he could call the ambulance. I sat there with my head hanging down between my knees and in a great lot of pain. I realised that I could not climb into the truck and endure the ride to the ER. And I could not wait for Pete to come back, so I struggled up and into the office and dialed 911. Something I had never done for myself. My first ride in an ambulance. I told the woman, "I fell off my horse and need an ambulance." I am not sure, but I might have told her I thought I'd broken my neck. But I'm not sure. I don't seem to have a remembrance of exactly when I learned for sure that my neck had broken. Maybe I instinctively knew it from the get go.
More about the ambulance ride and the hospital stay in another post.
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