Devin posted this on the ChiariConnectionInternational message board and I liked it so much,
I asked her if I could post it here. She said yes, so here it is, and I think some of you readers will understand her words.
Lost My Way
If you listen, I am here. We are the same in so many ways
Please listen closely as I speak at times,
I cannot make my mouth produce the right words, yet they are there.
Be patient with me. Do not assume that today I can conquer it all,
just because I slept all night through.
Walk a little slower because, like a child, I lose my footing, too.
Smile; do not feel that because I hurt
that we all have to walk around in a state of gloom.
Forgive, that I forget as I am not sure why,
I always have the best intentions, I do.
Try to understand that no, I have not become cynical.
I have temporarily lost my way.
Hold out your arms and be strong. I need a rock,
but I also can be yours in a different way.
Pain can change day to day, minute to second.
I am not complaining
I need to voice it
Inside it is still me. I am still fun, I just need to get strong.
Understand that one day, I WILL be the real me again.
Right now I am just trying to get back on the trail
but I have learned so much from the detour
Devin Kalisz
Wednesday, October 3, 2007
Not a good day...
Cherry tomatoes, Early Girl tomatoes and bulbs of garlic are vacationing upon my kitchen windowsill, stretched out on imaginary beach chairs in an effort to obtain that perfectly ripe tan.
Soon, we will wake up to frost, as even tonight, snow is predicted to fall 1500 feet higher than our elevation at home. If I find a tomato a little bit orangy, I bring it in and try to wrangle one last bit of summer out of my garden.
Perhaps because of yesterday and all I went through, today has not been good. I've felt very weak. Last night, I took my medication before bed, but the gelcap never made its way to the expected destination: my stomach. It clung, I reckon, to some folds of tissue in my esophagus all night long, finally waking me at 4:30. I got up and ate a slice of bread in an effort to coax the errant pill down the trail. Swallowing issues are common in brainstem compression. Finally, at 8 am, I tried some home-cooked oatmeal with Vermont maple syrup and that worked wonders.
The back of my pumpkin head tingles and hurts occipitally and doesn't want to stay up on the "stick" of my neck. The weakness is painful and diffuse. I take Norco every four hours and alternate with ibuprofen. I'm staying inside even though it is one heckuva beautiful Fall day outside.
And thinking? I'm just plain avoiding it!
Soon, we will wake up to frost, as even tonight, snow is predicted to fall 1500 feet higher than our elevation at home. If I find a tomato a little bit orangy, I bring it in and try to wrangle one last bit of summer out of my garden.
Perhaps because of yesterday and all I went through, today has not been good. I've felt very weak. Last night, I took my medication before bed, but the gelcap never made its way to the expected destination: my stomach. It clung, I reckon, to some folds of tissue in my esophagus all night long, finally waking me at 4:30. I got up and ate a slice of bread in an effort to coax the errant pill down the trail. Swallowing issues are common in brainstem compression. Finally, at 8 am, I tried some home-cooked oatmeal with Vermont maple syrup and that worked wonders.
The back of my pumpkin head tingles and hurts occipitally and doesn't want to stay up on the "stick" of my neck. The weakness is painful and diffuse. I take Norco every four hours and alternate with ibuprofen. I'm staying inside even though it is one heckuva beautiful Fall day outside.
And thinking? I'm just plain avoiding it!
Tuesday, October 2, 2007
Forced down the dark hallway
I am required to wear a CTO vest when I ride in a vehicle. CTO stands for Cervical Thoracic Orthotic. There is a photo of it on the right hand column of this page.
I can think of two reasons for this requirement: first, to help save my life if we are in an accident. Getting rear-ended or any other violent collision would spell death for me, given the state of my C1 and ligaments. In other words, I guess it wouldn't take much to cause it to break again.
Secondly, the orthotic is supposed to hold the weight of my head up off the compressed nerves of my Cspine. I know that it does something. It has an effect on me and not all of it is good.
Very often, while I am bundled up in the CTO, I feel an overwhelming need to fall asleep. I know from experience what will result from this, therefore I struggle against this magnetic pull. I feel like I am in a POW's cell and my tormentor comes to the door and opens it. I know what will happen when he leads me through that door and I do not want to go. He takes me down a long, long dark hallway with no light at the end. Helpless am I to prevent the inevitable from happening.
What happens within my brain as I slip into sleep, I cannot tell. Once again, words fail me to express what I am going through. I doze in a sort of straight up posture within the vest and apparatus which, with the help of four aluminum rods, holds my head in a position that must not be altogether good.
My metaphorical tormentor leads me down that dark hallway until we pass through a garden of rest and light dreams but next, we cross the courtyard and enter through the doorway to pain that is indescribable. That doorway is the reason I never wanted to fall asleep in this device in the first place. Because, within the walls of the room I enter, incredible torture awaits and there is nothing I can do but deal with it.
What I'm referring to here is the moment I wake up from the light sleep within the CTO. My brain hurts in a way that is nothing like a headache at all. It's neurons misfiring, circuits shorting, eyes that cannot focus, the world and I are not a part of each other. The earth is spinning one way, and I'm spinning the opposite but I do not mean you to take this literally. It isn't like anything is spinning actually, it's a burning, painful (but "pain" is not really the right word for what I feel--it is beyond pain, a hurting in a foreign way) out-of-body experience. I am weak beyond words. My legs and feet are electrified. But my biggest torture, perhaps the "Rack" of all the devices of Medieval treachery, is the misfiring of my brain cells.
I tell my husband at times like this, "I really don't feel good." But he says nothing. He has heard me voice such things several times a day every day for years. He knows that this moment will pass and in a little bit, I'll be okay, or at least, will appear much better to his eyes. There is no way that he can "get it." I hold him blameless.
I know the situation will pass. My captor will take me out of the chamber and down the dark hallway, thrust me back into my cell where I can lie on the rotted floor, catch my breath, allow cells to realign and reposition, and eventually drag myself back up to my knees and onto the dirty cot in the corner.
This must sound quite dramatic to the reader. But I can say with pure honesty that how I'm painting this is not even close to what it feels like to go through. Again, "there are no round words to fit into a square vocabulary." (www.painonline.com)
I resist falling asleep at these times (obviously, I do not drive. I have not driven since February, when I got the Draconian device). But succumbing to this slumber is not within my control. Something is physically compressed and something neurologically occurs and no doctor listens or tries to understand. I had someone ask my surgeon for me why this happens and he said that many people sleep in the CTO because the neck and head can finally relax when the orthotic takes over the job of holding things up, battling against gravity. But that doesn't explain the painful misfiring that forces me unwillingly into the loneliest of places: a no-man's land where no one has been and no one understands.
I can think of two reasons for this requirement: first, to help save my life if we are in an accident. Getting rear-ended or any other violent collision would spell death for me, given the state of my C1 and ligaments. In other words, I guess it wouldn't take much to cause it to break again.
Secondly, the orthotic is supposed to hold the weight of my head up off the compressed nerves of my Cspine. I know that it does something. It has an effect on me and not all of it is good.
Very often, while I am bundled up in the CTO, I feel an overwhelming need to fall asleep. I know from experience what will result from this, therefore I struggle against this magnetic pull. I feel like I am in a POW's cell and my tormentor comes to the door and opens it. I know what will happen when he leads me through that door and I do not want to go. He takes me down a long, long dark hallway with no light at the end. Helpless am I to prevent the inevitable from happening.
What happens within my brain as I slip into sleep, I cannot tell. Once again, words fail me to express what I am going through. I doze in a sort of straight up posture within the vest and apparatus which, with the help of four aluminum rods, holds my head in a position that must not be altogether good.
My metaphorical tormentor leads me down that dark hallway until we pass through a garden of rest and light dreams but next, we cross the courtyard and enter through the doorway to pain that is indescribable. That doorway is the reason I never wanted to fall asleep in this device in the first place. Because, within the walls of the room I enter, incredible torture awaits and there is nothing I can do but deal with it.
What I'm referring to here is the moment I wake up from the light sleep within the CTO. My brain hurts in a way that is nothing like a headache at all. It's neurons misfiring, circuits shorting, eyes that cannot focus, the world and I are not a part of each other. The earth is spinning one way, and I'm spinning the opposite but I do not mean you to take this literally. It isn't like anything is spinning actually, it's a burning, painful (but "pain" is not really the right word for what I feel--it is beyond pain, a hurting in a foreign way) out-of-body experience. I am weak beyond words. My legs and feet are electrified. But my biggest torture, perhaps the "Rack" of all the devices of Medieval treachery, is the misfiring of my brain cells.
I tell my husband at times like this, "I really don't feel good." But he says nothing. He has heard me voice such things several times a day every day for years. He knows that this moment will pass and in a little bit, I'll be okay, or at least, will appear much better to his eyes. There is no way that he can "get it." I hold him blameless.
I know the situation will pass. My captor will take me out of the chamber and down the dark hallway, thrust me back into my cell where I can lie on the rotted floor, catch my breath, allow cells to realign and reposition, and eventually drag myself back up to my knees and onto the dirty cot in the corner.
This must sound quite dramatic to the reader. But I can say with pure honesty that how I'm painting this is not even close to what it feels like to go through. Again, "there are no round words to fit into a square vocabulary." (www.painonline.com)
I resist falling asleep at these times (obviously, I do not drive. I have not driven since February, when I got the Draconian device). But succumbing to this slumber is not within my control. Something is physically compressed and something neurologically occurs and no doctor listens or tries to understand. I had someone ask my surgeon for me why this happens and he said that many people sleep in the CTO because the neck and head can finally relax when the orthotic takes over the job of holding things up, battling against gravity. But that doesn't explain the painful misfiring that forces me unwillingly into the loneliest of places: a no-man's land where no one has been and no one understands.
The taste of Pamidronate
I had my infusion at the cancer center of pamidronate last Friday, four days ago. When I pushed back the recliner as I watched the clear drip, drip, drip that is supposed to help strengthen my bones in preparation for my future craniocervical fusion, the burning taste of the chemical leached into the back of my mouth and throat. I know the sensation well, as I've felt it several times when being infused with contrast for an MRI or CT scan.
Today, I still have this taste all the way down my esophagus. A sort of slightly-burning presence and a bitter flavor that is not sensed by the taste buds in my mouth, but absorbed into my brain through the esophagus. In other words, I can't taste the chemical on my tongue or inside my mouth, but it's a taste that is powerfully present nonetheless. It creates an ever-present nausea, as well.
I just called the nurse and asked her, and she is going to question the doctor and get back to me. I imagine it is normal, but always think it's good to make sure.
Today, I still have this taste all the way down my esophagus. A sort of slightly-burning presence and a bitter flavor that is not sensed by the taste buds in my mouth, but absorbed into my brain through the esophagus. In other words, I can't taste the chemical on my tongue or inside my mouth, but it's a taste that is powerfully present nonetheless. It creates an ever-present nausea, as well.
I just called the nurse and asked her, and she is going to question the doctor and get back to me. I imagine it is normal, but always think it's good to make sure.
Monday, October 1, 2007
Lancinating Pains- "It's a brain thing"
We who suffer with Central Pain all share one challenge. We cannot find the words to describe what we are dealing with. How can I use words to describe something to someone who has never experienced this?
How can I illustrate to a man, blind from birth, what color the sun is? What words will get the message across as to just what "yellow" means?
One of the CP symptoms I suffer from are lancinating pains. Now, "lancinating" is an excellent word. It has that visual effect right from the start. Lance. A sharply-pointed stick meant for pain or death.
I think that as humans, we all have something that "pushes our buttons." Something in our history has installed a device that when pushed immediately evokes some reaction. Fear. Pain.
Anger.
That is what a lancinating pain does to me. I can get them in various places and they tend to change around at their will, but I have had a spot on my upper, right deltoid muscle that has had one for the longest time. There is a small skin lesion there, a seeming eruption from the unseen fire deep within. And when it hits, immediately it "pushes my buttons." I used to call it "immediate access to the brain," but learned recently that pain begins in the brain. So, the lance, the spot on the arm, the nerve and the brain are all connected, sympatico with each other and sing in unison a tortuous tune. The lance will fade away until the next time and ice applied to the area does help.
I learned from a friend awhile back that the brain can only recognize one sensation for the same area at a time. Consider your big toe and you stub it on the coffee table and it hurts incessantly. Then, for some ungodly reason, you stick that toe into the glowing fireplace. There will be only one sensation that the brain will assign for that toe, not two. You will not feel the pain of the stubbing AND the burning of the fire. You will feel one or the other and my guess is you'll feel the burn.
Thus, icing helps a lot with these tortures the body and brain dish out. That is, if you have enough ice and are able to stay still long enough to apply several ice paks to the areas in question. But it really does help and I thank God for that.
I've had these lancinating pains for years now. One is very common in my left foot and when it hits, I could easily believe I have broken a bone in that foot. I've broken the metatarsal bone in my right foot so I do know what it feels like. That lancer is just like that, and I have to limp to get the weight off the foot, but then, as steathily as it arrived, it leaves and the foot is good as normal. These days, I go with the flow. I can also say that the lancer in the foot is not the same, not as bad as the one in the right arm.
Giving shots to a nervous dog, one technique that is useful is to scratch the dog behind the ear very vigorously. She will be more aware of the thing happening closest to the brain. This must be the reason why the lancer in the deltoid has a much greater impact than the one in the foot. Time and distance to travel?
How can I illustrate to a man, blind from birth, what color the sun is? What words will get the message across as to just what "yellow" means?
One of the CP symptoms I suffer from are lancinating pains. Now, "lancinating" is an excellent word. It has that visual effect right from the start. Lance. A sharply-pointed stick meant for pain or death.
I think that as humans, we all have something that "pushes our buttons." Something in our history has installed a device that when pushed immediately evokes some reaction. Fear. Pain.
Anger.
That is what a lancinating pain does to me. I can get them in various places and they tend to change around at their will, but I have had a spot on my upper, right deltoid muscle that has had one for the longest time. There is a small skin lesion there, a seeming eruption from the unseen fire deep within. And when it hits, immediately it "pushes my buttons." I used to call it "immediate access to the brain," but learned recently that pain begins in the brain. So, the lance, the spot on the arm, the nerve and the brain are all connected, sympatico with each other and sing in unison a tortuous tune. The lance will fade away until the next time and ice applied to the area does help.
I learned from a friend awhile back that the brain can only recognize one sensation for the same area at a time. Consider your big toe and you stub it on the coffee table and it hurts incessantly. Then, for some ungodly reason, you stick that toe into the glowing fireplace. There will be only one sensation that the brain will assign for that toe, not two. You will not feel the pain of the stubbing AND the burning of the fire. You will feel one or the other and my guess is you'll feel the burn.
Thus, icing helps a lot with these tortures the body and brain dish out. That is, if you have enough ice and are able to stay still long enough to apply several ice paks to the areas in question. But it really does help and I thank God for that.
I've had these lancinating pains for years now. One is very common in my left foot and when it hits, I could easily believe I have broken a bone in that foot. I've broken the metatarsal bone in my right foot so I do know what it feels like. That lancer is just like that, and I have to limp to get the weight off the foot, but then, as steathily as it arrived, it leaves and the foot is good as normal. These days, I go with the flow. I can also say that the lancer in the foot is not the same, not as bad as the one in the right arm.
Giving shots to a nervous dog, one technique that is useful is to scratch the dog behind the ear very vigorously. She will be more aware of the thing happening closest to the brain. This must be the reason why the lancer in the deltoid has a much greater impact than the one in the foot. Time and distance to travel?
What having fun does to ya!
We noticed our neighbors walking up to visit. I had just fallen to sleep when my husband called that company was coming. We had a wonderful two-hour visit with them. I should have put on my Aspen collar, but this is why I didn't: I didn't want them to feel my discomfort and I didn't want them to feel uncomfortable seeing me in it.
Sitting on the side of the dining room table, I looked left and right as different people talked, and I nodded my head, as you do when listening to or telling stories. I laughed a lot, too.
After they left, we drove into town and I forgot to wear the collar again. We only live a mile from town, so I figured I could get by without it. What fun that was, looking to the side out the window and seeing houses and yards that I usually do not see because the vest or collar keeps me so restricted.
Late in the afternoon, back at home, I've been hit with nausea and tremors, losing balance, having chills, and extreme weakness. Gotta stop that partying!
Sitting on the side of the dining room table, I looked left and right as different people talked, and I nodded my head, as you do when listening to or telling stories. I laughed a lot, too.
After they left, we drove into town and I forgot to wear the collar again. We only live a mile from town, so I figured I could get by without it. What fun that was, looking to the side out the window and seeing houses and yards that I usually do not see because the vest or collar keeps me so restricted.
Late in the afternoon, back at home, I've been hit with nausea and tremors, losing balance, having chills, and extreme weakness. Gotta stop that partying!
Movin' kinda slow at the Junction...
Only us old timers remember where the title lyrics came from: the show Petticoat Junction, back when all of TV was displayed in black, white and shades of gray. I always remember the gals swimming in the wooden water-tank near the railroad tracks, clothes draped over the sides to suggest (dare we think it!) impetuous nudity, and the sweet Southern belles peeping over the rim of the tank during the song and waving!
Rained all day yesterday and I took the dog for a walk in the dripping forest. Loved it, but paying for it. I think maybe that I can't go for walks. It really irritates the tethered cord. So, in a way, finding the woods area across the road to walk in might be something of a sad tease.
Woke up from the burning hip/lower back pain, so got up. Usually, I do not take pain meds right away when I get up. I wait till I have to take them, figuring I will take less through the day that way. I have friends who tell me that is the wrong way to take them, and my husband tells me this, too. But I have an anvil for a head.
This morning, though, I did take a pain pill first thing and it did help some. I hate waking up and sitting in the living room and feeling that horrid, tortuous neurological malaise come over me, the all-over feeling of painful "offness." When the weight of my skull needs to be carried by my spine and compresses whatever nerves are caught in the way, what results!
I just noticed cars on our road heading for work and slowing down to a crawl past our place. Looking out our window, I spotted the flock of our neighborhood's wild turkeys making their morning rounds. Half the flock is across the road, and some are in our yard, all seeking the seemingly delicious acorns that is the staple of their Fall diet. This year, with an abundant crop from all the oaks here, these "beauty is in the eye of the beholder" birds should be deliciously fat soon. I think they are beautiful.
Yesterday, I had some fun with a rainy-day project. I have a mirror that I bought for $2 at Goodwill, it is about 18" square, just flat glass with a blue-painted border. Using the hot-glue gun, I stuck on pieces of forsythia branches and buttons and old keys, old rings and necklace crosses that had been rummaging around in the bottom of my little-used jewelry box for years. I added little pine cones, an old green-painted hinge, the drawer pull from an antique dresser. I love how it came out! It is back hanging in the hallway now and I stop to look at it often, wishing the reflection of myself in this adorned mirror was a whole lot prettier. Results of a self-hair-cutting adventure combined with dark circles around the eyes stare back at me, and so I move over to the side, where the reflection disappears and I can admire my handiwork of day before.
God bless you today, dear reader.
Rained all day yesterday and I took the dog for a walk in the dripping forest. Loved it, but paying for it. I think maybe that I can't go for walks. It really irritates the tethered cord. So, in a way, finding the woods area across the road to walk in might be something of a sad tease.
Woke up from the burning hip/lower back pain, so got up. Usually, I do not take pain meds right away when I get up. I wait till I have to take them, figuring I will take less through the day that way. I have friends who tell me that is the wrong way to take them, and my husband tells me this, too. But I have an anvil for a head.
This morning, though, I did take a pain pill first thing and it did help some. I hate waking up and sitting in the living room and feeling that horrid, tortuous neurological malaise come over me, the all-over feeling of painful "offness." When the weight of my skull needs to be carried by my spine and compresses whatever nerves are caught in the way, what results!
I just noticed cars on our road heading for work and slowing down to a crawl past our place. Looking out our window, I spotted the flock of our neighborhood's wild turkeys making their morning rounds. Half the flock is across the road, and some are in our yard, all seeking the seemingly delicious acorns that is the staple of their Fall diet. This year, with an abundant crop from all the oaks here, these "beauty is in the eye of the beholder" birds should be deliciously fat soon. I think they are beautiful.
Yesterday, I had some fun with a rainy-day project. I have a mirror that I bought for $2 at Goodwill, it is about 18" square, just flat glass with a blue-painted border. Using the hot-glue gun, I stuck on pieces of forsythia branches and buttons and old keys, old rings and necklace crosses that had been rummaging around in the bottom of my little-used jewelry box for years. I added little pine cones, an old green-painted hinge, the drawer pull from an antique dresser. I love how it came out! It is back hanging in the hallway now and I stop to look at it often, wishing the reflection of myself in this adorned mirror was a whole lot prettier. Results of a self-hair-cutting adventure combined with dark circles around the eyes stare back at me, and so I move over to the side, where the reflection disappears and I can admire my handiwork of day before.
God bless you today, dear reader.
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