Well, it's been a week since I've blogged. I'm sorry because I know some folks check here to see how I'm doing and, thus, I've sort of left you hanging!
The first part of last week was really pretty bad for me, but from about Wednesday on, I started feeling better than I have in a long, long time. The pain in my legs and feet started to go away, at least, the most intense part of the pain. It's still there, but not like it was. When the pain is not there, I don't feel as weak, and I feel like I could actually build up some strength in the future.
It's funny, when you are in constant, chronic pain, it's so hard to see anything very bright about the future. And if you are getting worse, it becomes very difficult to have a happy outlook. You just hold on by faith, tooth and nail, just believing that a better day will soon arrive.
But just give me one good day, or less, and my mind starts thinking immediately about how the future could be, how maybe next year I could do a little hiking again, maybe do a little work, maybe get a miniature horse for the back two acres. It's the indomitable human spirit...I have a book about ranching and it's called "Next Year Country." It tells how ranchers and farmers are always fighting the battle of bad calf crops or droughts by saying, "Next year, it'll be better." That's how I've been feeling.
But, oh, the first of the week was bad and I had thoughts of truly wishing I could be with my Dad in Heaven.
A topic hard for me to write about is depression. And antidepressants. But a discussion of my journey through injury and partial recovery would not be complete without a mention of this.
I always had such an even keel on my emotions. I never could imagine needing medications to get through a day emotionally because I was one of those people who appreciated even the most minute detail of that day. I smiled a lot, joked a lot, laughed a lot. And felt happier than I ever even let on.
Suddenly, my injury happened. And with it came brain damage, and no one to help me understand all that I was dealing with. I had no understanding of the seriousness of my injury and no one to explain, or even admit, that I had suffered brain injury. It was a very tough, lonely road.
Eventually, after extensive neuropsychological testing, I was diagnosed with Post Traumatic Stress Disorder. I was told that this is a diagnosis that is too-often given to patients, but that it applies to those who have been close to death or seen death.
I fought very hard against any diagnoses such as depression or PTSD or PCS (post concussion syndrome). I was a cowboy and I was tough. I could handle this myself. And anything like depression or anxiety was a sure sign of weakness, something I would not allow myself to believe I could have.
And besides, I'm on the edge of a generation that believes that anti-depressants are for drug seekers. Many of my peers probably still feel that way. It is a taboo subject still today. I know it is, because it is hard to write about it right now as it applies to me. I mean, I have all the compassion for someone else who needs to take ADs. But myself? Let's not mince words. There is still a bit shame.
Finally, my doctor and my therapist talked me into trying an AD. The first one wasn't right for me, but the 2nd one, Cymbalta, was. It helped me immediately. I thought it was a great drug, because I felt no side effects and only felt relief from anxiety and sadness. I could cry when the time might call for crying. I didn't feel flat emotionally like I did with the first AD.
Recently, I went off of Cymbalta. Even though I had one therapist and one neuropsychologist who both said I should stay on it the rest of my life, I was feeling very strong emotionally. I felt perhaps I'd lose weight if I went off of the drug and also, I wondered if some cognitive challenges might be eased without it.
Cymbalta is a drug that was originally created for diabetic neuropathy (nerve pain). They found it helped with depression, and then authorized it for use for those with emotional issues.
I can't believe that the improvement in my leg pain is due to the fact I'm back on this medication. After all, the legs got better the same day as I started back on a very low dose. But I do wonder if getting off of Cymbalta showed me just what pain this drug was alleviating. I think it was a lot better at relieving some nerve pain than I understood.
So, I'm back on the med....and I'm feeling much, much better. I got to revisit what my brain does without it, how the injury affected me emotionally, and I don't ever want to go back there. I'd rather have the extra weight...and admit I am taking it, than to live in that sad world without the ability to recognize the joy of each moment and the journey to a bright future.
Sunday, June 22, 2008
Sunday, June 15, 2008
Some serious hammock time`
Is it hot where you are today? Or perhaps you are in Australia or South Africa or South America, and it is early winter?
This afternoon, for an hour and a half, I laid in my hammock on the hill behind our house. Strung between a cluster of oaks and a sturdy pine tree, it is positioned parallel to our house and therefore, parallel to our view.
I love the view from the hammock, where I can see towering pines marching down nearby slopes and beyond, a wide open dry, valley stretching toward the Columbia Hills I can see in the far distance. There's a lot of haying going on in the valley now, we see the tractors and swathers heading down our road toward their job in the broad valley.
The hammock swings just a little bit, from my weight and the breezes in the trees. I brought with me a blanket and I'm wearing a flannel jacket. Still, I am slightly shivering within. The little blanket helps a lot as I read chapter after chapter of my latest read, a thriller called "WhiteOut" which I picked up yesterday at the General Store in town, on their used book shelf.
My legs are incredibly painful, and my feet. I took a Percocet before heading out, but it took a very long time for the edge to go off the pain. They still hurt now, but at least, the edge is off.
My calves are the worst. So painful. This is spinal cord stuff, linked to the Tethered Cord surgery...or maybe it's all due to the upper Cspine problems, because I have read that if you injure yourself high enough up in the Cspine, you can have symptoms in all four extremities.
My new little dog Mickey lies on the ground beside me. Occasionally, I put my bare foot down onto the oak-leaf covered earth and feel the sun soaking into the ground. A faint whiff of a skunk floats by on a breeze that comes from the south, so I think about our neighbor and his reported skunk problems. Something we haven't had at all yet. Neighbor admits he keeps dry dog food outside on the porch in a container. That must be the difference. We don't.
I had made up my mind yesterday morning to get rid of Mickey. He's been too much of a big, heavy puppy for disabled folks. And yesterday he got up onto the guest bed and in five minutes, destroyed the sheets to shreds in happy abandon. That had been the straw...I emailed the lady at the rescue who had placed him with us.
When we stopped at a yard sale yesterday a mile from our house, the people had signs in the driveway showing they are Dachshund fans. I asked them if they'd like to buy Mickey. They took my number down and sounded interested.
Then, last night while playing outside, Mickey must have gotten stung by a bee or something. I didn't hear him yelp, but he's been on three legs since then. He's a very courageous dog.
And he has done something that has changed my mind about giving him away. He has not relented in wanting to stay with me, no matter what room I am in, or where I am at in the yard. On 3 legs, I'd expect him to keep sleeping wherever he was comfortable. But he does not, he sticks by my side.
I've decided to keep trying with him. And he isn't in any pain...so it seems.
Finishing a chapter in my book and finally tiring of shivering, I get up and head down the little hill to our house. My feet and legs are SO painful, so weak. As I pass the thermometer on the side of the house next to the door heading inside, I notice the temperature: 110 degrees in the sun. It's probably about 80 in the shade.
Temperature regulation is controlled by the brainstem. I've been having trouble with these chills now for about the last month. It's a new symptom. It isn't a quick, little goose-flesh chill that passes momentarily. It lasts for hours.
How I love the hammock and our yard! Life is lovely and our Creator is so good!
Happy Father's Day to all the fathers reading this. Some of you might not be a biological father, but you are fathering children anyway. This includes special wishes for you.
This afternoon, for an hour and a half, I laid in my hammock on the hill behind our house. Strung between a cluster of oaks and a sturdy pine tree, it is positioned parallel to our house and therefore, parallel to our view.
I love the view from the hammock, where I can see towering pines marching down nearby slopes and beyond, a wide open dry, valley stretching toward the Columbia Hills I can see in the far distance. There's a lot of haying going on in the valley now, we see the tractors and swathers heading down our road toward their job in the broad valley.
The hammock swings just a little bit, from my weight and the breezes in the trees. I brought with me a blanket and I'm wearing a flannel jacket. Still, I am slightly shivering within. The little blanket helps a lot as I read chapter after chapter of my latest read, a thriller called "WhiteOut" which I picked up yesterday at the General Store in town, on their used book shelf.
My legs are incredibly painful, and my feet. I took a Percocet before heading out, but it took a very long time for the edge to go off the pain. They still hurt now, but at least, the edge is off.
My calves are the worst. So painful. This is spinal cord stuff, linked to the Tethered Cord surgery...or maybe it's all due to the upper Cspine problems, because I have read that if you injure yourself high enough up in the Cspine, you can have symptoms in all four extremities.
My new little dog Mickey lies on the ground beside me. Occasionally, I put my bare foot down onto the oak-leaf covered earth and feel the sun soaking into the ground. A faint whiff of a skunk floats by on a breeze that comes from the south, so I think about our neighbor and his reported skunk problems. Something we haven't had at all yet. Neighbor admits he keeps dry dog food outside on the porch in a container. That must be the difference. We don't.
I had made up my mind yesterday morning to get rid of Mickey. He's been too much of a big, heavy puppy for disabled folks. And yesterday he got up onto the guest bed and in five minutes, destroyed the sheets to shreds in happy abandon. That had been the straw...I emailed the lady at the rescue who had placed him with us.
When we stopped at a yard sale yesterday a mile from our house, the people had signs in the driveway showing they are Dachshund fans. I asked them if they'd like to buy Mickey. They took my number down and sounded interested.
Then, last night while playing outside, Mickey must have gotten stung by a bee or something. I didn't hear him yelp, but he's been on three legs since then. He's a very courageous dog.
And he has done something that has changed my mind about giving him away. He has not relented in wanting to stay with me, no matter what room I am in, or where I am at in the yard. On 3 legs, I'd expect him to keep sleeping wherever he was comfortable. But he does not, he sticks by my side.
I've decided to keep trying with him. And he isn't in any pain...so it seems.
Finishing a chapter in my book and finally tiring of shivering, I get up and head down the little hill to our house. My feet and legs are SO painful, so weak. As I pass the thermometer on the side of the house next to the door heading inside, I notice the temperature: 110 degrees in the sun. It's probably about 80 in the shade.
Temperature regulation is controlled by the brainstem. I've been having trouble with these chills now for about the last month. It's a new symptom. It isn't a quick, little goose-flesh chill that passes momentarily. It lasts for hours.
How I love the hammock and our yard! Life is lovely and our Creator is so good!
Happy Father's Day to all the fathers reading this. Some of you might not be a biological father, but you are fathering children anyway. This includes special wishes for you.
Friday, June 13, 2008
Excellent article on Occult Tethered Cord
You have to join Medscape to read this one, but it's free and easy to do.
I really have used this article quite a bit to share with people who have interest in learning about Occult Tight Filum or Occult Tethered Cord.
http://www.medscape.com/viewarticle/405672_6
I really have used this article quite a bit to share with people who have interest in learning about Occult Tight Filum or Occult Tethered Cord.
http://www.medscape.com/viewarticle/405672_6
The cerebellar cognitive affective syndrome
Friend Caroline directed me to a great study link at
http://brain.oxfordjournals.org/cgi/content/abstract/121/4/561
The cerebellar cognitive affective syndrome
JD Schmahmann and JC Sherman Department of Neurology, Massachusetts General Hospital, Boston 02114, USA.
Anatomical, physiological and functional neuroimaging studies suggest that the cerebellum participates in the organization of higher order function, but there are very few descriptions of clinically relevant cases that address this possibility. We performed neurological examinations, bedside mental state tests, neuropsychological studies and anatomical neuroimaging on 20 patients with diseases confined to the cerebellum, and evaluated the nature and severity of the changes in neurological and mental function. Behavioural changes were clinically prominent in patients with lesions involving the posterior lobe of the cerebellum and the vermis, and in some cases they were the most noticeable aspects of the presentation. These changes were characterized by: impairment of executive functions such as planning, set-shifting, verbal fluency, abstract reasoning and working memory; difficulties with spatial cognition including visual-spatial organization and memory; personality change with blunting of affect or disinhibited and inappropriate behaviour; and language deficits including agrammatism and dysprosodia. Lesions of the anterior lobe of the cerebellum produced only minor changes in executive and visual- spatial functions. We have called this newly defined clinical entity the 'cerebellar cognitive affective syndrome'. The constellation of deficits is suggestive of disruption of the cerebellar modulation of neural circuits that link prefrontal, posterior parietal, superior temporal and limbic cortices with the cerebellum.
*****************************************************************
So, you may be thinking, what in the world does that all mean? Some of my readers understand this "med speak" much better than I do, and I suspect some of you might be baffled at why this article has interest to me.
Well, let's see. I have an "acquired, post traumatic chiari" which means that part of my cerebellum has herniated or been pulled down into the spinal canal (the same is true of my brainstem).
Since my injury, I have had so many cognitive challenges and they are so hard to explain, even to myself! I just didn't understand why and I didn't have words to explain just what my challenges were. All I could say was, "It's hard for me to talk on the phone." It's hard for me to do several things at once like I used to. "I find it hard to do things that have multiple steps."
For example, a friend ordered 3 books from me. All I had to do was take those books, inscribe them and wrap them up, put them into a box, address the box and take them to the PO and send them on their merry way.
But it took me a week to do it and I finally had to make myself get it done. The night before I knew I had to knuckle down and package up these books, I went to the closet and got the three books from a box. I got the address book, the packaging tape and put them with the books onto the kitchen island. This felt good. I had gotten a few of the steps out of the way.
how could this be hard to do? It's simple as it can be. But it's a struggle for me. Finally, the next day, I accomplished this task.
When Caroline shared this link, it helped me so much. Listen to the problems that people with this newly-named syndrome have: "These changes were characterized by: impairment of executive functions such as planning, set-shifting, verbal fluency, abstract reasoning and working memory; difficulties with spatial cognition including visual-spatial organization and memory"
I looked up "set shifting" and found this information fascinating. It means that when you are working on a project with multiple steps (and what project doesn't have multiple steps?), you must go from one step to the next. But for people with this syndrome, they find difficulty with forgetting about the previous step so that they can move to the next step. The previous memory stays with them and clutters the mind.
I can SO relate to this! And it caught me broadside because I thought, "This is why I can't play a muscical instrument anymore!" I thought about how you must forget one step immediately and move onto the next, and how my struggles with playing, besides the obvious physical challenges, caused me to feel "brain-fried" after playing my mandolin, banjo or guitar.
Once again, I can't explain why I feel better just knowing there's a reason for why I experience things the way I do. It's not very often that we find doctors who will explain these things to us, if they even know. And yet, it's something we live with, day in and day out and if we can say, "This is normal for someone with damage to the cerebellum...this is expected for someone who has suffered these traumatic injuries," it all affords some sense of understanding and normalcy and awareness that is healing on a different level.
Caroline also shared this link, to Dr. Oro's blog:
http://www.chiaritimes.com/ChiariTimes/Blog/Entries/2007/11/16_The_New_Cerebellum.html
Thanks, my Canadian friend!
http://brain.oxfordjournals.org/cgi/content/abstract/121/4/561
The cerebellar cognitive affective syndrome
JD Schmahmann and JC Sherman Department of Neurology, Massachusetts General Hospital, Boston 02114, USA.
Anatomical, physiological and functional neuroimaging studies suggest that the cerebellum participates in the organization of higher order function, but there are very few descriptions of clinically relevant cases that address this possibility. We performed neurological examinations, bedside mental state tests, neuropsychological studies and anatomical neuroimaging on 20 patients with diseases confined to the cerebellum, and evaluated the nature and severity of the changes in neurological and mental function. Behavioural changes were clinically prominent in patients with lesions involving the posterior lobe of the cerebellum and the vermis, and in some cases they were the most noticeable aspects of the presentation. These changes were characterized by: impairment of executive functions such as planning, set-shifting, verbal fluency, abstract reasoning and working memory; difficulties with spatial cognition including visual-spatial organization and memory; personality change with blunting of affect or disinhibited and inappropriate behaviour; and language deficits including agrammatism and dysprosodia. Lesions of the anterior lobe of the cerebellum produced only minor changes in executive and visual- spatial functions. We have called this newly defined clinical entity the 'cerebellar cognitive affective syndrome'. The constellation of deficits is suggestive of disruption of the cerebellar modulation of neural circuits that link prefrontal, posterior parietal, superior temporal and limbic cortices with the cerebellum.
*****************************************************************
So, you may be thinking, what in the world does that all mean? Some of my readers understand this "med speak" much better than I do, and I suspect some of you might be baffled at why this article has interest to me.
Well, let's see. I have an "acquired, post traumatic chiari" which means that part of my cerebellum has herniated or been pulled down into the spinal canal (the same is true of my brainstem).
Since my injury, I have had so many cognitive challenges and they are so hard to explain, even to myself! I just didn't understand why and I didn't have words to explain just what my challenges were. All I could say was, "It's hard for me to talk on the phone." It's hard for me to do several things at once like I used to. "I find it hard to do things that have multiple steps."
For example, a friend ordered 3 books from me. All I had to do was take those books, inscribe them and wrap them up, put them into a box, address the box and take them to the PO and send them on their merry way.
But it took me a week to do it and I finally had to make myself get it done. The night before I knew I had to knuckle down and package up these books, I went to the closet and got the three books from a box. I got the address book, the packaging tape and put them with the books onto the kitchen island. This felt good. I had gotten a few of the steps out of the way.
how could this be hard to do? It's simple as it can be. But it's a struggle for me. Finally, the next day, I accomplished this task.
When Caroline shared this link, it helped me so much. Listen to the problems that people with this newly-named syndrome have: "These changes were characterized by: impairment of executive functions such as planning, set-shifting, verbal fluency, abstract reasoning and working memory; difficulties with spatial cognition including visual-spatial organization and memory"
I looked up "set shifting" and found this information fascinating. It means that when you are working on a project with multiple steps (and what project doesn't have multiple steps?), you must go from one step to the next. But for people with this syndrome, they find difficulty with forgetting about the previous step so that they can move to the next step. The previous memory stays with them and clutters the mind.
I can SO relate to this! And it caught me broadside because I thought, "This is why I can't play a muscical instrument anymore!" I thought about how you must forget one step immediately and move onto the next, and how my struggles with playing, besides the obvious physical challenges, caused me to feel "brain-fried" after playing my mandolin, banjo or guitar.
Once again, I can't explain why I feel better just knowing there's a reason for why I experience things the way I do. It's not very often that we find doctors who will explain these things to us, if they even know. And yet, it's something we live with, day in and day out and if we can say, "This is normal for someone with damage to the cerebellum...this is expected for someone who has suffered these traumatic injuries," it all affords some sense of understanding and normalcy and awareness that is healing on a different level.
Caroline also shared this link, to Dr. Oro's blog:
http://www.chiaritimes.com/ChiariTimes/Blog/Entries/2007/11/16_The_New_Cerebellum.html
Thanks, my Canadian friend!
Not a pretty face time...
Sometimes, it's hard to keep putting a pretty face on it.
Like today, we drove the 35 miles to our closest doctor/shopping town. We intended it to be a good day. I was dressed up in my CTO and doing what I should to make things go okay for me. We made a few stops. Each time, I take off the CTO in order to go into the store. I feel like I need the break from restriction, and also, I still hate the looks from people. I wear it in to our local, small town stores and smile broadly to everyone as if to say, "I'm having a better day than you are! Don't feel sorry for me!"
But you know, it's all a ruse. It's all a bluff. I can trick even myself into believing that is true...for awhile. But the truth is, I'm not having a good day. I'm having a crappy day. I just don't want it out in the wide open for everyone to see and give me sympathetic looks!
How can I "move on" and think about normal things when I'm in this brace and yes, it gives me some relief at times, though at others, it's just like my old brace, the Aspen. The Johnson feels really good at first, but eventually, my cranium slumps back and starts compressing things and I get to thinking that I don't know if I could live with myself if it ever progressed to feeling like this all the time.
These braces are good but only up to a point. And I fear getting a halo. It's so permanent, there's no taking it off for breaks. And I fear the restrictiveness of it.
Anyway, we had planned to go grocery shopping after my husband's doctor appointment. We always try to go shopping in that town if we can because the prices are so much better than they are in the little stores locally.
I sat in the waiting room, had to tell my story to the doctor because he saw me out the window when we drove up to park and I had the brace on. I visited some with the secretary, then I nodded right off sound asleep in the midst of our conversation. The doctor came in and invited me into the room with my husband and I got up, feeling really badly. I sat and listened to what the man had to say, but then I had to say (surprisingly to me) that we needed to leave, the doctor needed to wrap it up or give my husband another appointment because I felt so weak, so much in pain, so dizzy and nauseous. That was fine, the doctor was done anyway.
We got out to the truck and I said I could not go grocery shopping after all. It's a hard decision to make, we'd been waiting to shop at this particular store. But, the right situation and it's easy to make hard decisions. We headed home and when we got here, I laid down and fell right to sleep.
Well, it was to be expected. Yesterday, we had to drive to Portland for another doctor appointment. Again, this was meant to be a fun trip. We don't get to go anywhere because of how I feel and my husband is recovering from foot surgery...so, in the spirit of a post I made a few messages back about making the little things special, we had plans for a wonderful lunch, and a lovely drive through the Columbia Gorge.
And it was, but at the doctor's office, I needed to leave my husband and go outside into a larger waiting area and lie down on two adjoining benches, just to get the weight of my head off of my spine. The arrangement was uncomfortable for lying down, but eventually doing so helped a lot. Yet, back in the car, with the CTO on, again, things just felt compressed that shouldn't be, or maybe it was due to the rolling back and forth, side to side, of just being in a vehicle.
We stopped for gas and at the station was one of those small McDonald's. We discussed that we might like to share a little dish of ice cream. But I decided easily not to go in. I didn't have the energy to unstrap the CTO, and I didn't have the strength to bear people looking at me. I don't need ice cream anyway.
This all reinforces how badly I need the fusion...but of course, I'm not going to get one for at least a year and naturally, as badly as I need to keep thinking positively, I know the truth is, they might "open you up and do a test screw and if your bones are no good, we'll close you back up and not do the fusion." (according to Dr. B a month or so ago). How easily this all rolls off the tongue! Except it directly affects ME and how I can deal with life for what's left of it.
So, I have a love/hate relationship with the CTO. I love the sporty straps on it and the headband that gives so much stability (Mendelbaum!) but I hate the clumsiness of it, the restriction of it, and most of all, the looks from people, even tho they are sympathetic.
I told my husband today that the next time I am wearing the CTO and someone asks me, "What happened?" I'm going to look at them very seriously and say, "Nothing! Why?" Of course, after that, I'd smile and let them know I was having an absolutely fabulous day.
The other little observation I have had is that when I am talking to strangers in the CTO, I talk very fast and try to dominate the conversation, or at least, control the direction it takes, so that I can avoid being asked that question.
This is all so, so hard. Most of the time. Sometimes, it's so hard, it is so serious, I have no words for it and my facade comes crashing down. Like today. And yesterday.
Like today, we drove the 35 miles to our closest doctor/shopping town. We intended it to be a good day. I was dressed up in my CTO and doing what I should to make things go okay for me. We made a few stops. Each time, I take off the CTO in order to go into the store. I feel like I need the break from restriction, and also, I still hate the looks from people. I wear it in to our local, small town stores and smile broadly to everyone as if to say, "I'm having a better day than you are! Don't feel sorry for me!"
But you know, it's all a ruse. It's all a bluff. I can trick even myself into believing that is true...for awhile. But the truth is, I'm not having a good day. I'm having a crappy day. I just don't want it out in the wide open for everyone to see and give me sympathetic looks!
How can I "move on" and think about normal things when I'm in this brace and yes, it gives me some relief at times, though at others, it's just like my old brace, the Aspen. The Johnson feels really good at first, but eventually, my cranium slumps back and starts compressing things and I get to thinking that I don't know if I could live with myself if it ever progressed to feeling like this all the time.
These braces are good but only up to a point. And I fear getting a halo. It's so permanent, there's no taking it off for breaks. And I fear the restrictiveness of it.
Anyway, we had planned to go grocery shopping after my husband's doctor appointment. We always try to go shopping in that town if we can because the prices are so much better than they are in the little stores locally.
I sat in the waiting room, had to tell my story to the doctor because he saw me out the window when we drove up to park and I had the brace on. I visited some with the secretary, then I nodded right off sound asleep in the midst of our conversation. The doctor came in and invited me into the room with my husband and I got up, feeling really badly. I sat and listened to what the man had to say, but then I had to say (surprisingly to me) that we needed to leave, the doctor needed to wrap it up or give my husband another appointment because I felt so weak, so much in pain, so dizzy and nauseous. That was fine, the doctor was done anyway.
We got out to the truck and I said I could not go grocery shopping after all. It's a hard decision to make, we'd been waiting to shop at this particular store. But, the right situation and it's easy to make hard decisions. We headed home and when we got here, I laid down and fell right to sleep.
Well, it was to be expected. Yesterday, we had to drive to Portland for another doctor appointment. Again, this was meant to be a fun trip. We don't get to go anywhere because of how I feel and my husband is recovering from foot surgery...so, in the spirit of a post I made a few messages back about making the little things special, we had plans for a wonderful lunch, and a lovely drive through the Columbia Gorge.
And it was, but at the doctor's office, I needed to leave my husband and go outside into a larger waiting area and lie down on two adjoining benches, just to get the weight of my head off of my spine. The arrangement was uncomfortable for lying down, but eventually doing so helped a lot. Yet, back in the car, with the CTO on, again, things just felt compressed that shouldn't be, or maybe it was due to the rolling back and forth, side to side, of just being in a vehicle.
We stopped for gas and at the station was one of those small McDonald's. We discussed that we might like to share a little dish of ice cream. But I decided easily not to go in. I didn't have the energy to unstrap the CTO, and I didn't have the strength to bear people looking at me. I don't need ice cream anyway.
This all reinforces how badly I need the fusion...but of course, I'm not going to get one for at least a year and naturally, as badly as I need to keep thinking positively, I know the truth is, they might "open you up and do a test screw and if your bones are no good, we'll close you back up and not do the fusion." (according to Dr. B a month or so ago). How easily this all rolls off the tongue! Except it directly affects ME and how I can deal with life for what's left of it.
So, I have a love/hate relationship with the CTO. I love the sporty straps on it and the headband that gives so much stability (Mendelbaum!) but I hate the clumsiness of it, the restriction of it, and most of all, the looks from people, even tho they are sympathetic.
I told my husband today that the next time I am wearing the CTO and someone asks me, "What happened?" I'm going to look at them very seriously and say, "Nothing! Why?" Of course, after that, I'd smile and let them know I was having an absolutely fabulous day.
The other little observation I have had is that when I am talking to strangers in the CTO, I talk very fast and try to dominate the conversation, or at least, control the direction it takes, so that I can avoid being asked that question.
This is all so, so hard. Most of the time. Sometimes, it's so hard, it is so serious, I have no words for it and my facade comes crashing down. Like today. And yesterday.
Saturday, June 7, 2008
Big Brown and Bullriding
Today, we watched a sad day in racing as Big Brown, in everyone's book slated to win the Belmont and therefore become the first Triple Crown winner in 30 years, came up short in that bid. The bay stallion, having suffered a "quarter crack" in one of his forefeet since the Preakness, had been unable to train due to the crack, and it looked that, without having the chance to build up his stamina for the incredibly long Belmont, and given the 93 degree heat, the horse with the big heart wasn't going to fulfill his incredible promise.
Big Brown became the first horse ever to go into the Belmont having won the Preakness and Kentucky Derby to then come in last. His jockey wisely had pulled him up to save stress on the horse. I admired him for that.
Tonight, I watched my favorite sport, the Professional BullRiders' tour from Orlando. One of my favorite riders is Brazilian Paulo Crimber. And no, it's not because he has the same first name as my neurosurgeon! He's just so much fun with his wacky robot dance he does after he successfully rides a bull, his faith of which he is not ashamed, and just his good nature.
About 2.5 months ago, Paulo came off a bull, landing on the top of his head and "cracking" his C1.
You can imagine how close to home this felt to me. The Justin Sports Medicine surgeon, Dr. Tandy Freeman, reported at the end of that fateful event that Paulo would be back in about 3 weeks.
I did something I never do. I found the bullrider's website. I emailed him that he should NOT return to riding bulls that soon, and told him a bit of my story. I didn't expect to hear back from him and I didn't. No big deal.
Then, tonight, at Orlando, there is Paulo, back and ready to ride. He said to the interviewer, Leah Garcia, that he had not gotten on any practice bulls. That the bull he was about to ride in the competition would be the first one he'd be back riding since "cracking" his C1.
My husband and I watched unbelievably, on live TV, as Paulo came off the bull in almost the same manner as the night he'd broken his neck. Then, the 1200 lb. bull fell on top of him.
The cowboy struggled to his feet and crossed the arena holding on to the back of his head, an area I know all too well. He knelt against the doctor with his head into the doctor's chest, looking for comfort. I knew how he must be feeling. There is NO feeling, nothing to compare, to pain in that area that is millimeters from your brainstem.
Dr. Freeman asked him where he hurt and Paulo said, "My neck." The doctor asked him if he thought he could walk out of the arena and Paulo said yes. Dr. Freeman said, "Well let's do that then."
Paulo stood up and walked out, wincing with each step in a way that cut me to the bone. I know so well what that wincing represents.
I was simply incredulous. I knew he should not be returning to bullriding, not this year, if ever again at all. And to see this horrific wreck, it hit me strongly.
Later, reporter Leah Garcia stated that Dr. Freeman said that Paulo had broken his collar bone.
The commentators and we, ourselves, breathed a sigh of relief. JW Hart said, "Hey, it's bad he broke his collarbone, but a collarbone is better than a broken neck any day!"
But...from my own experience...they really do not know yet what happened to Paulo in this subsequent wreck. The doctors didn't know I had suffered atlanto occipital dislocation until 3. 5 years after my injury! I am praying for Paulo and for his doctors and that they will go to the lengths necessary to discover the extent of this accident tonight, especially as it relates to his C1.
How sad to see a youthful athlete at the top of his game cut down like this.
The picture above is of Paulo, swiped from his website.
Little things mean a lot
I cannot travel much, unless I really have, like when I go to New York to see my neurosurgeon. I can't go to small events even nearby, it's all just too much.
So, I have discovered that to make even small things very special will go a long way to meet my personal needs. The sight of a new-to-me throw pillow I picked up at the thrift store for $1 gives pleasurable feelings. Instead of just making a sandwich, I "do it up grand" with one of my homemade pickles on the side, a little bit of cut-up watermelon, half of a non-alcoholic beer in a pretty, etched glass picked up at the senior's thrift shop and frosted in the freezer, maybe a few chips or crackers on the plate, then head outside to a little table and listen to the wind chimes and birds in the trees and I swear I'm at a resort someplace.
I could just lie down on a bed and read, or better yet, take some pillows and a blanket, a footstool and sit outside in the shade and I think I'm at the beach, only better!
Each day, you can be inspired to make the banal and commonplace special, extraordinary and sublime. Without spending a bit of money extra, you can trick your brain into thinking you are on Maui or up in the mountains at a ski lodge. Light a pine-scented candle at night while you watch television...turn on a lilting symphony of music while you do at-home PT or other therapy.
If you cannot go to the ocean or a lake, take a pan of water out on the back porch and good book, and soak your feet and splash them around and imagine being on a dock with your legs dangling in the cold water. Endorphins are there for the taking and it takes very little to release their power.
The other day, I ordered on ebay (for $12) a hammock. The glorious yet unassuming package arrived at our rural mailbox across the road, and I hung it between a pine and some oaks up on the hill behind our house where I can see it beckoning to me. And I can thank God for chronic illness because now I have time to sit in a hammock!
Try not to focus on the negative and what you can't do...I can't take care of my flower garden and yard like I used to, even last year. So what? There will be more weeds for the pulling, but then again, I can walk past and reach down and pull a weed once in awhile, and hey, I can be thankful I have something to do!
Well, I need to go get my novel and try out that new hammock!
So, I have discovered that to make even small things very special will go a long way to meet my personal needs. The sight of a new-to-me throw pillow I picked up at the thrift store for $1 gives pleasurable feelings. Instead of just making a sandwich, I "do it up grand" with one of my homemade pickles on the side, a little bit of cut-up watermelon, half of a non-alcoholic beer in a pretty, etched glass picked up at the senior's thrift shop and frosted in the freezer, maybe a few chips or crackers on the plate, then head outside to a little table and listen to the wind chimes and birds in the trees and I swear I'm at a resort someplace.
I could just lie down on a bed and read, or better yet, take some pillows and a blanket, a footstool and sit outside in the shade and I think I'm at the beach, only better!
Each day, you can be inspired to make the banal and commonplace special, extraordinary and sublime. Without spending a bit of money extra, you can trick your brain into thinking you are on Maui or up in the mountains at a ski lodge. Light a pine-scented candle at night while you watch television...turn on a lilting symphony of music while you do at-home PT or other therapy.
If you cannot go to the ocean or a lake, take a pan of water out on the back porch and good book, and soak your feet and splash them around and imagine being on a dock with your legs dangling in the cold water. Endorphins are there for the taking and it takes very little to release their power.
The other day, I ordered on ebay (for $12) a hammock. The glorious yet unassuming package arrived at our rural mailbox across the road, and I hung it between a pine and some oaks up on the hill behind our house where I can see it beckoning to me. And I can thank God for chronic illness because now I have time to sit in a hammock!
Try not to focus on the negative and what you can't do...I can't take care of my flower garden and yard like I used to, even last year. So what? There will be more weeds for the pulling, but then again, I can walk past and reach down and pull a weed once in awhile, and hey, I can be thankful I have something to do!
Well, I need to go get my novel and try out that new hammock!
Friday, June 6, 2008
redemption
Well, my PCP certainly did redeem himself. I guess I just need to get used to his style of doctoring. He's not a warm, fuzzy feeling kinda guy. Just give me the facts, m'am! He took notes and he did understand what I wanted because he has already addressed my concerns.
Yesterday I got a script for liquid calcium (however, my pharmacy cannot find this product available for them to order and they changed it to chewable calcium, over the counter). This is for my problems with swallowing.
My doctor's assistant has already sent off a request to my insurance to authorize a swallowing study.
And today, I got a copy of the letter written by him and sent to the insurance company requesting that they reconsider and allow me to have an inversion table for therapy at home. He recorded that Dr. B had firmly stated that I am to avoid a car accident (though there is one error in my PCP's letter, in that he says I am to avoid "another" car accident, when in truth, I've never been in one). at all costs.
So, I'm thankful. He addressed these things before the end of the week and that is also commendable.
I am doing much better with swallowing since a nurse friend online shared with me some tips to avoid the "food stuck in the back of the throat" scenario. I'm crushing my calcium up in an antique, cast iron mortar-and-pestle and mixing that with applesauce. It works well, actually.
But my Tethered Cord stuff still seems to be causing most of my pain and suffering. I ache and hurt from my waist down, particularly at the lumbar region, the buttocks and behind the knees.
The new dog is doing well. He's much more "puppy" than we had expected and he wants to chew all the time and has way too much energy. But he's very smart and really wants to please. He's bonded tightly to me, goes from room to room wherever I go. He comes when I call him, and I've started working with him just a little bit on the leash in the house in order to affirm "stay" and "sit" with him.
I got the new Pronex cervical traction unit in the mail yesterday. It is something that works with air, pumping up through a bulb like the cuff/blood pressure units. I tried it once today and laid in it for five minutes and got up in a lot of pain. I figure it will take some time getting used to.
Yesterday I got a script for liquid calcium (however, my pharmacy cannot find this product available for them to order and they changed it to chewable calcium, over the counter). This is for my problems with swallowing.
My doctor's assistant has already sent off a request to my insurance to authorize a swallowing study.
And today, I got a copy of the letter written by him and sent to the insurance company requesting that they reconsider and allow me to have an inversion table for therapy at home. He recorded that Dr. B had firmly stated that I am to avoid a car accident (though there is one error in my PCP's letter, in that he says I am to avoid "another" car accident, when in truth, I've never been in one). at all costs.
So, I'm thankful. He addressed these things before the end of the week and that is also commendable.
I am doing much better with swallowing since a nurse friend online shared with me some tips to avoid the "food stuck in the back of the throat" scenario. I'm crushing my calcium up in an antique, cast iron mortar-and-pestle and mixing that with applesauce. It works well, actually.
But my Tethered Cord stuff still seems to be causing most of my pain and suffering. I ache and hurt from my waist down, particularly at the lumbar region, the buttocks and behind the knees.
The new dog is doing well. He's much more "puppy" than we had expected and he wants to chew all the time and has way too much energy. But he's very smart and really wants to please. He's bonded tightly to me, goes from room to room wherever I go. He comes when I call him, and I've started working with him just a little bit on the leash in the house in order to affirm "stay" and "sit" with him.
I got the new Pronex cervical traction unit in the mail yesterday. It is something that works with air, pumping up through a bulb like the cuff/blood pressure units. I tried it once today and laid in it for five minutes and got up in a lot of pain. I figure it will take some time getting used to.
Tuesday, June 3, 2008
Doctors and IVs and stuff
Yesterday I went to my PCP here locally and I was quite dismayed. I started to explain my problems and told him I had a list of questions (I've never asked much of him before) and he said, "You have an appointment for 15 minutes so you might not have time for that."
I've NEVER had a doctor tell me this before. I should have called him on it, but instead, I got myself wound up trying to explain my swallowing issues and other concerns to him. Telling him I need this test or some help urgently. I was rapid0firing thru my questions and forgetting some of them. I made a comment about, "maybe I need to make another appointment," and he said, "Maybe you should!" but in a way that sounded a bit sarcastic to me.
I thought I'd learned enough about doctors and how to handle them and deal with them that I wouldn't allow a doctor to do this to me anymore. I thought I'd have his respect, and maybe, just maybe, his compassion. Even today as I write this, I still have a feeling of rejection about it.
So, he said he's going to see when the specialist next comes all the way here from Spokane to help stroke victims in the hospital learn to swallow...so I have to wait, and also wait for the assistant to type up a letter and send it to work comp and of course, work comp will take "at least five business days." Meanwhile, I am in a situation that could be pretty dire. Aspiration of food into the lungs causes pneumonia and death. I have no gag reflex and I'm winging it on my own.
Today, I went to the cancer ctr to have my IV drip of pamidronate. It was nice to see the nurses there again. I filled them in on my situation since I'd last seen them in December. The treatment made me feel sick, it caused stabbing pains here and there and made me fall asleep "painfully" in my brain. When you get fast but long IV drips like that, you feel like you have to go to the bathroom often, as if you were standing at a bar drinking beer after beer. I get up and pull the IV pole along with me and it works.
Coming home, the service van driver told me that his late wife, who bore the same first name as me, had died 3 years earlier of cancer, and what had started her progression toward death was aspiration of food into her lungs. I had not told him about my swallowing issues! And then to hear she had the same name as I, not THAT common of a name, it kind of felt like a warning sign being sent to me.
Tonight, I'm feeling a bit down. It will pass.
I've NEVER had a doctor tell me this before. I should have called him on it, but instead, I got myself wound up trying to explain my swallowing issues and other concerns to him. Telling him I need this test or some help urgently. I was rapid0firing thru my questions and forgetting some of them. I made a comment about, "maybe I need to make another appointment," and he said, "Maybe you should!" but in a way that sounded a bit sarcastic to me.
I thought I'd learned enough about doctors and how to handle them and deal with them that I wouldn't allow a doctor to do this to me anymore. I thought I'd have his respect, and maybe, just maybe, his compassion. Even today as I write this, I still have a feeling of rejection about it.
So, he said he's going to see when the specialist next comes all the way here from Spokane to help stroke victims in the hospital learn to swallow...so I have to wait, and also wait for the assistant to type up a letter and send it to work comp and of course, work comp will take "at least five business days." Meanwhile, I am in a situation that could be pretty dire. Aspiration of food into the lungs causes pneumonia and death. I have no gag reflex and I'm winging it on my own.
Today, I went to the cancer ctr to have my IV drip of pamidronate. It was nice to see the nurses there again. I filled them in on my situation since I'd last seen them in December. The treatment made me feel sick, it caused stabbing pains here and there and made me fall asleep "painfully" in my brain. When you get fast but long IV drips like that, you feel like you have to go to the bathroom often, as if you were standing at a bar drinking beer after beer. I get up and pull the IV pole along with me and it works.
Coming home, the service van driver told me that his late wife, who bore the same first name as me, had died 3 years earlier of cancer, and what had started her progression toward death was aspiration of food into her lungs. I had not told him about my swallowing issues! And then to hear she had the same name as I, not THAT common of a name, it kind of felt like a warning sign being sent to me.
Tonight, I'm feeling a bit down. It will pass.
Sunday, June 1, 2008
Want to understand Chiari?
Friends and loved ones, guests and searchers,
Here is a really good video, it lasts about 28 minutes. It comes from North Shore University Hospital in Manhasset, NY, where I went for my tethered cord surgery and invasive cervical traction, and where I will be returning for my craniocervical fusion.
In an interview-style, Dr. Thomas Milhorat explains Arnold Chiari Malformation, and also mentions "acquired chiari," which is what I have. Dr. Milhorat was my neurosurgeon, along with Dr. Bolognese, when I had my spinal cord surgery last November (2007). Also, Dr. Milhorat was the one to discover that when I broke my C1 in 2004, the injury also included "atlanto occipital dislocation" (the skull came loose from the spine). He also said that I have "a chiari but not Chiari." Meaning my tonsillar herniation is not due to anything congenital but to the trauma.
I think an awful lot of this man!
Dr. B, another one of my heroes, is also shown in this video explaining how the surgeons at The Chiari Institute use color doppler during surgery to measure and keep track of cerebral spinal fluid flow. This also allows them to know what the CSF flow is like pre op, and then post op.
I hope you will be interested enough to watch this. You will also see Dr. M make a brief mention that many people diagnosed with Chronic Fatigue Syndrome and Fibromyalgia actually have Chiari Malformation.
http://www.nslij.com/workfiles/video/medicalupdate/mu17.html
[note, I will admit to one thing Dr. M says in this video with which I'm not in agreement. He states, in answer to the interviewer's query, that once the chiari surgery is done, symptoms are resolved. Sadly, I have not found this to be true in my readings of posts by Chiari sufferers, or from people I know personally. Perhaps Dr. M was making a quick answer or perhaps he was referring to pediatric patients, or maybe I misunderstood him.]
Here is a really good video, it lasts about 28 minutes. It comes from North Shore University Hospital in Manhasset, NY, where I went for my tethered cord surgery and invasive cervical traction, and where I will be returning for my craniocervical fusion.
In an interview-style, Dr. Thomas Milhorat explains Arnold Chiari Malformation, and also mentions "acquired chiari," which is what I have. Dr. Milhorat was my neurosurgeon, along with Dr. Bolognese, when I had my spinal cord surgery last November (2007). Also, Dr. Milhorat was the one to discover that when I broke my C1 in 2004, the injury also included "atlanto occipital dislocation" (the skull came loose from the spine). He also said that I have "a chiari but not Chiari." Meaning my tonsillar herniation is not due to anything congenital but to the trauma.
I think an awful lot of this man!
Dr. B, another one of my heroes, is also shown in this video explaining how the surgeons at The Chiari Institute use color doppler during surgery to measure and keep track of cerebral spinal fluid flow. This also allows them to know what the CSF flow is like pre op, and then post op.
I hope you will be interested enough to watch this. You will also see Dr. M make a brief mention that many people diagnosed with Chronic Fatigue Syndrome and Fibromyalgia actually have Chiari Malformation.
http://www.nslij.com/workfiles/video/medicalupdate/mu17.html
[note, I will admit to one thing Dr. M says in this video with which I'm not in agreement. He states, in answer to the interviewer's query, that once the chiari surgery is done, symptoms are resolved. Sadly, I have not found this to be true in my readings of posts by Chiari sufferers, or from people I know personally. Perhaps Dr. M was making a quick answer or perhaps he was referring to pediatric patients, or maybe I misunderstood him.]
One dog, two dogs, old dog, new dog
Here's some photos of Mickey, the shiny black and tan Dachshund mix we just adopted,
and Quincy, the black and grey Doxie mix we rescued 3 years ago. They are getting along pretty well!
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