Buckled up tight in my CTO vest, not able to look left or right, up or down, I sat rigidly in the passenger seat of our car as we drove to town to do some errands. The sky was brilliantly blue, even more so since we'd had 12 days of freezing fog previous to this glorious morning.
I studied the high foothills and the snow-capped peaks, the deer trails that latticed their way up steep slopes.
And a selfish, childish part of my psyche thought, "Tell me, O Lord, what is better now than when I could be in the mountains. If I knew what it is, I could be happy in this situation."
And I felt Him answer: "I didn't promise you better."
He promises us a spiritual walk in His Kingdom, and it is true, I am with Him more now than before,
and though He didn't promise an earthly "better..."
...it is, if I am closer to Him.
Thursday, January 29, 2009
how my new Neurosurgeon visit went last Wednesday.
I had a "meet and greet" with a NS on Jan. 21. It occurred to me that I had not reported here on how it went. I have a feeling that my "neuro" friends who read this will relate to how it went and how I was treated, and how I felt.
It seemed to be a waste of my strength and energy, but God knows.
I got there and the paperwork showed me he planned to give me ten minutes. He came out to get me and we went straight into the exam room and I told him up front, I don't know why I'm here. He said, I don't know why you are here either, all I got was this appt. form!
I was in my CTO, so I explained my situation, after he first asked me why I went all the way to NY for surgery. I took my CD of my latest imaging in NY (a copy of it) and gave it to him. He took it and looked at it, and came back saying, I see no evidence of the tethered cord they say you have.
And I said, that imaging was done after the filum was cut. (duh! so yeah, there was no tethering in those images)
I'd asked him earlier, have you dealt with many people with Jefferson fractures? He looked down at his papers and said, "Oh lots of 'em."
I asked him if he performed Chiari surgery and he looked down at his papers and said again, "Oh sure, lots of 'em." (My neuro friends reading this will know the point I'm making here. No NS in the world is doing LOTS of Chiari surgeries except the full time specialists. They may do one or two a year, tops. The Jefferson Fracture thing, he might in fact see several JF's a year since he is a NS in a ski town).
Bottom line, he said, "I have no interest in working under another neurosurgeon. I've never done it before and I don't plan to."
I said, "What if I went to NY and had a halo put on and then had problems and needed local help?"
He responded, "I don't know, what WOULD happen?"
I said, "What if I went to NY for surgery, and then had a CSF leak later here at home and needed local attention?"
He said the same thing, looked me right in the eye (obviously he wanted to push this point home) and said, "I don't know. You need to ask your NY surgeon that."
I asked if he would put a halo vest on me if the NY doc said I needed one.
"No. Believe me, people have big wrecks all the time with their halo vests, and I have no interest working under another neurosurgeon!"
I said, "I am online and know many peers from all over the world who have gone to this facility for surgery, and surely they have local doctors who will work with them for small problems."
He said, "I'm not interested in doing it." So, I replied, "Well, if that does happen, and I need a doctor (I said this all very softly, right out of my heart, without any defensiveness or malice), I will have to try to find one who will think....with his heart."
This got his attention and he said, "Oh, if you came to me in an emergency situation, I would not turn you away." (Oh, thank you so much, dear doctor!)
I actually told him I understood very well how this all must make him feel. That I trained horses all my life and if someone called in another trainer while I was working with the horse, it wouldn't work. I understood. I gave him some CCI biz cards, telling him to give them to his many chiari patients (yeah right), I was crying and so I apologized and said I was sorry for getting a bit misty, and he walked out of the room saying, "That's okay. You have a lot on your plate right now."
So, that's that. I cried more in the car. One feels so rejected, I know you all know what I mean, Feeling desperate that if I had surgery, I'm lost when I come home, if I have problems. One good thing from the appt could be that for me, I learned that this is something important that I need to nail down before surgery: who would take care of me locally? I could ask Dr. B if he has a colleague in Portland, OR who might work with him and me.
I had on my list of questions (and believe me, I stroked this NS like a fat kitty cat!) to see if he'd listen to my problems that I've had since my injury almost five years ago, that I feel is indicative of autonomic dysreflexia, a very important thing to know if you have it. He said that was not something he'd talk about, I need to see a neurologist (NL) for that.
I have been to one of the NLs in that office and don't have plans to see her again...maybe I can find one in a different town. Maybe this surgeon got his feelings stepped on a bit, but maybe it convicted him of how big his ego is, and how that big ego is keeping him from truly helping people.
In the end, new NS said he is going to talk to my hematologist/oncologist Dr. Fu to see what he expected from him, since Dr. Fu set up the appt.
It seemed to be a waste of my strength and energy, but God knows.
I got there and the paperwork showed me he planned to give me ten minutes. He came out to get me and we went straight into the exam room and I told him up front, I don't know why I'm here. He said, I don't know why you are here either, all I got was this appt. form!
I was in my CTO, so I explained my situation, after he first asked me why I went all the way to NY for surgery. I took my CD of my latest imaging in NY (a copy of it) and gave it to him. He took it and looked at it, and came back saying, I see no evidence of the tethered cord they say you have.
And I said, that imaging was done after the filum was cut. (duh! so yeah, there was no tethering in those images)
I'd asked him earlier, have you dealt with many people with Jefferson fractures? He looked down at his papers and said, "Oh lots of 'em."
I asked him if he performed Chiari surgery and he looked down at his papers and said again, "Oh sure, lots of 'em." (My neuro friends reading this will know the point I'm making here. No NS in the world is doing LOTS of Chiari surgeries except the full time specialists. They may do one or two a year, tops. The Jefferson Fracture thing, he might in fact see several JF's a year since he is a NS in a ski town).
Bottom line, he said, "I have no interest in working under another neurosurgeon. I've never done it before and I don't plan to."
I said, "What if I went to NY and had a halo put on and then had problems and needed local help?"
He responded, "I don't know, what WOULD happen?"
I said, "What if I went to NY for surgery, and then had a CSF leak later here at home and needed local attention?"
He said the same thing, looked me right in the eye (obviously he wanted to push this point home) and said, "I don't know. You need to ask your NY surgeon that."
I asked if he would put a halo vest on me if the NY doc said I needed one.
"No. Believe me, people have big wrecks all the time with their halo vests, and I have no interest working under another neurosurgeon!"
I said, "I am online and know many peers from all over the world who have gone to this facility for surgery, and surely they have local doctors who will work with them for small problems."
He said, "I'm not interested in doing it." So, I replied, "Well, if that does happen, and I need a doctor (I said this all very softly, right out of my heart, without any defensiveness or malice), I will have to try to find one who will think....with his heart."
This got his attention and he said, "Oh, if you came to me in an emergency situation, I would not turn you away." (Oh, thank you so much, dear doctor!)
I actually told him I understood very well how this all must make him feel. That I trained horses all my life and if someone called in another trainer while I was working with the horse, it wouldn't work. I understood. I gave him some CCI biz cards, telling him to give them to his many chiari patients (yeah right), I was crying and so I apologized and said I was sorry for getting a bit misty, and he walked out of the room saying, "That's okay. You have a lot on your plate right now."
So, that's that. I cried more in the car. One feels so rejected, I know you all know what I mean, Feeling desperate that if I had surgery, I'm lost when I come home, if I have problems. One good thing from the appt could be that for me, I learned that this is something important that I need to nail down before surgery: who would take care of me locally? I could ask Dr. B if he has a colleague in Portland, OR who might work with him and me.
I had on my list of questions (and believe me, I stroked this NS like a fat kitty cat!) to see if he'd listen to my problems that I've had since my injury almost five years ago, that I feel is indicative of autonomic dysreflexia, a very important thing to know if you have it. He said that was not something he'd talk about, I need to see a neurologist (NL) for that.
I have been to one of the NLs in that office and don't have plans to see her again...maybe I can find one in a different town. Maybe this surgeon got his feelings stepped on a bit, but maybe it convicted him of how big his ego is, and how that big ego is keeping him from truly helping people.
In the end, new NS said he is going to talk to my hematologist/oncologist Dr. Fu to see what he expected from him, since Dr. Fu set up the appt.
Tuesday, January 27, 2009
What the new endo said...
Yesterday, Dr. Madison called me from his office at OHSU in Portland, OR. He talked to me for about 45 minutes. A very kind man.
These are my notes on what he said:
"My global opinion is that stabilization will help you now more than Forteo"
"If you have surgery now, I do not believe the screws would fall out"
"Your problems are more orthopedic than they are molecular."
He will start me on Forteo and that would help a little (and not do any harm) during recovery-fusing stage. He does feel my bones would rebuild and would "fuse" in a bone graft. His words, "Fusion most likely would work."
When I told him they are going to put a halo on me after the surgery, he said, "Oh well, then, it should be no problem at all!"
He says I have mild to moderate osteopenia. He says I might not have been absorbing the pamidronate (the IV trx I had for 18 mo), though pamidronate stays in the system for five years.
I am in a little bit better shape than what he usually starts people on Forteo are, but we both decided I would start the Forteo as soon as insurance approves it and stay on it for 2 years. He compared my DEXA to one I had done in 2003, and said, "You are sorta holding your own, but you are slipping a little."
My labs (he's doing extensive testing, I have 3 more I'm doing right now) are "pretty normal, levels are acceptable, and you tested negative for malabsorption [of calcium and Vitamin D]."
Today I am doing a 24 hour urine collection, will take that in to the lab (I'm so blessed, I have a lab one mile from my house in the hospital in our little town), then on Thursday I do another 24 hour collection!
But Dr. M is definitely doing a thorough workup! I am so impressed with this guy! Imagine how down I was after that DEXA that said my bones were significantly worse http://jeffersonfracture.blogspot.com/2008/12/im-crushed.html and I had lost 8% of my bone mass!! Imagine if I did not push to see a different endo!! That test was all wrong! Dr. Madison called it a "technical aberration."
So...this is all very good news!
And leads me to make my big decision...
I have sent an email to Dr. B in NY to ask him if we can schedule the surgery. I'm ready. And if he doesn't want to proceed right now, then can we schedule me to go see him for a consult. I need to have this all re-imaged and considered and find out if more settling has taken place...and what to do about it.
I'll let you know.
These are my notes on what he said:
"My global opinion is that stabilization will help you now more than Forteo"
"If you have surgery now, I do not believe the screws would fall out"
"Your problems are more orthopedic than they are molecular."
He will start me on Forteo and that would help a little (and not do any harm) during recovery-fusing stage. He does feel my bones would rebuild and would "fuse" in a bone graft. His words, "Fusion most likely would work."
When I told him they are going to put a halo on me after the surgery, he said, "Oh well, then, it should be no problem at all!"
He says I have mild to moderate osteopenia. He says I might not have been absorbing the pamidronate (the IV trx I had for 18 mo), though pamidronate stays in the system for five years.
I am in a little bit better shape than what he usually starts people on Forteo are, but we both decided I would start the Forteo as soon as insurance approves it and stay on it for 2 years. He compared my DEXA to one I had done in 2003, and said, "You are sorta holding your own, but you are slipping a little."
My labs (he's doing extensive testing, I have 3 more I'm doing right now) are "pretty normal, levels are acceptable, and you tested negative for malabsorption [of calcium and Vitamin D]."
Today I am doing a 24 hour urine collection, will take that in to the lab (I'm so blessed, I have a lab one mile from my house in the hospital in our little town), then on Thursday I do another 24 hour collection!
But Dr. M is definitely doing a thorough workup! I am so impressed with this guy! Imagine how down I was after that DEXA that said my bones were significantly worse http://jeffersonfracture.blogspot.com/2008/12/im-crushed.html and I had lost 8% of my bone mass!! Imagine if I did not push to see a different endo!! That test was all wrong! Dr. Madison called it a "technical aberration."
So...this is all very good news!
And leads me to make my big decision...
I have sent an email to Dr. B in NY to ask him if we can schedule the surgery. I'm ready. And if he doesn't want to proceed right now, then can we schedule me to go see him for a consult. I need to have this all re-imaged and considered and find out if more settling has taken place...and what to do about it.
I'll let you know.
Bits and Pieces
I've been feeling really bad. Lots of pain below the waist, legs, etc. Very weak. And especially feel like it's harder to hold my head up. I lie down several times a day in order to relieve everything, but that position flares up my tethered cord stuff.
Have you ever noticed how much of your neck muscles you use when you turn over in bed, or get out of bed? I knew after I broke my neck. I used to have to put a flat hand on both sides of my head, and manually lift and turn my head to turn over in bed. And to get out of bed or out of a chair, I put my right hand behind my head, cupping the occipital area, and helped carry the weight of my head to an upright position.
Today, I am still doing the same thing to get out of bed. I don't put hands on the sides of my head to turn over, but it hurts to strain those neck muscles like that. There's a lot of pressure on those muscles, you might stop to think about it tonight as you roll over in bed!
**********************************************
I finally bought a medical bracelet, in case I am ever in the presence of an EMT again. I like this bracelet, it's kind of pretty, it's slim, and has about an inch and a half long door that opens up and you can put a folded piece of paper into it, or write something onto a small slip of paper, that an EMT or medical professional should know in the case of emergency.
On mine, I wrote, "C1 frx, severe skull base issues. Do not intubate unless life and death. Do not hyperextend neck. Possible autonomic dysreflexia."
These are the only things I think are most important in an urgent scenario. One of the first things EMTs do is tilt the head backward in order to open the airway. Doing that to me could cause my C1 to slice through my spinal cord, or some other stuff I'm not sure of.
Intubating someone calls for this hyper extension of the neck as well. When I have my surgeries, they have to have what they call "awake intubation." I've heard this is a horror show to experience, to be intubated awake (having the tube put down your airway to your lungs). For some reason, they need me awake to help them do the job right, I guess, but using the least amount of hyperextension. In the OR setting, they give you "Versid" so that you forget about all this stuff. You experienced it, but you have no recollection of it.
The autonomic dysreflexia, I need to have that verified by a good neurologist. I hope, next time I got to TCI, I can have this confirmed, or not. It's a condition that affects people with spinal cord injuries. If you get stressed, in pain, excited etc, your blood pressure goes up. In "normies," you have a message that gets sent up the spine to the brain that tells the brain that the BP has spiked and to slow down the heart, get the BP down. In some spinal cord injured patients, this system is interrupted and the message never gets to the brain. The BP spikes, but nothing gets it to go back down.
It's necessary for emergency medical personnel to know this, because they might see a very high BP (I had one spike the other day of more than 181/152. I figure it was more because it took me a couple of calm minutes to get the BP monitor out and set up before I got the reading), try to give me a med to lower it, and I guess autonomic dysreflexia does not respond to regular BP meds. In fact, I learned on one website that people with verified AD should carry a med called Procardia at all times.
********************************************************
I have had several phone calls I've needed to make for about a week. I've written here often about my situation with making calls. It's so hard for me. I think I figured out why yesterday.
When I finally feel pretty good on a certain day, and there are not other things really pressing to be done, I might think, "I feel like calling so and so!" Then I'll think: "But first, while I feel okay, I'll do the dishes and put a load of laundry in, and make the beds. THEN I'll call."
And by the time I'm a little bit into those chores, I feel the neuro symptoms creeping back in, and I know I won't be calling anyone.
When people call ME, and catch me unaware, I so often enjoy the call because I perhaps have not already done any household chores!
**************************************************
I was thinking about how my prayers have changed. My desires. My wants.
When I first got hurt, and for a few years afterward, I wanted to be back to normal. I wanted my normal life back. I wanted horses and to be able to ride again. I wanted to be able to travel, and to perform again. I just wanted to be the normal, old me again.
Slowly, time creeps by and you learn to settle for less. Okay, I can't do my job anymore and I never will, but I'd like to have just one horse, just for me to ride and only at a walk through the woods. Please Lord.
That fades away, and I readjust and think, "Well, I'll be happy gardening. All I want is to be able to take care of my yard and enjoy it. Yeah, that's it."
Things keep declining and dreams start changing, too.
I find myself happy if I can do light yard stuff, and keep my house clean. Without pain. Maybe never have to wear a CTO or collar again, yeah, that too! Yeah, I can give up everything else, if I could have a life with these things in it, I'd be happy. Oh, and being able to ride in a car to travel a bit though the western states. Okay, Lord?
Next, without thinking of it, I find myself adjusting again. Okay, if I can keep the house clean, and drive half a day's drive away (I mean "ride", not drive. I haven't really driven in 2 years) and work in my yard without leaning over, okay, I can live with that...
Dreams get dialed in again. Right now, I feel like, If I could get up in the morning and not hurt so much. If I could go through the whole day without debilitating pain and weakness, I can live like that. I can learn to do with that.
I guess survival depends upon lowering expectations when necessary.
Have you ever noticed how much of your neck muscles you use when you turn over in bed, or get out of bed? I knew after I broke my neck. I used to have to put a flat hand on both sides of my head, and manually lift and turn my head to turn over in bed. And to get out of bed or out of a chair, I put my right hand behind my head, cupping the occipital area, and helped carry the weight of my head to an upright position.
Today, I am still doing the same thing to get out of bed. I don't put hands on the sides of my head to turn over, but it hurts to strain those neck muscles like that. There's a lot of pressure on those muscles, you might stop to think about it tonight as you roll over in bed!
**********************************************
I finally bought a medical bracelet, in case I am ever in the presence of an EMT again. I like this bracelet, it's kind of pretty, it's slim, and has about an inch and a half long door that opens up and you can put a folded piece of paper into it, or write something onto a small slip of paper, that an EMT or medical professional should know in the case of emergency.
On mine, I wrote, "C1 frx, severe skull base issues. Do not intubate unless life and death. Do not hyperextend neck. Possible autonomic dysreflexia."
These are the only things I think are most important in an urgent scenario. One of the first things EMTs do is tilt the head backward in order to open the airway. Doing that to me could cause my C1 to slice through my spinal cord, or some other stuff I'm not sure of.
Intubating someone calls for this hyper extension of the neck as well. When I have my surgeries, they have to have what they call "awake intubation." I've heard this is a horror show to experience, to be intubated awake (having the tube put down your airway to your lungs). For some reason, they need me awake to help them do the job right, I guess, but using the least amount of hyperextension. In the OR setting, they give you "Versid" so that you forget about all this stuff. You experienced it, but you have no recollection of it.
The autonomic dysreflexia, I need to have that verified by a good neurologist. I hope, next time I got to TCI, I can have this confirmed, or not. It's a condition that affects people with spinal cord injuries. If you get stressed, in pain, excited etc, your blood pressure goes up. In "normies," you have a message that gets sent up the spine to the brain that tells the brain that the BP has spiked and to slow down the heart, get the BP down. In some spinal cord injured patients, this system is interrupted and the message never gets to the brain. The BP spikes, but nothing gets it to go back down.
It's necessary for emergency medical personnel to know this, because they might see a very high BP (I had one spike the other day of more than 181/152. I figure it was more because it took me a couple of calm minutes to get the BP monitor out and set up before I got the reading), try to give me a med to lower it, and I guess autonomic dysreflexia does not respond to regular BP meds. In fact, I learned on one website that people with verified AD should carry a med called Procardia at all times.
********************************************************
I have had several phone calls I've needed to make for about a week. I've written here often about my situation with making calls. It's so hard for me. I think I figured out why yesterday.
When I finally feel pretty good on a certain day, and there are not other things really pressing to be done, I might think, "I feel like calling so and so!" Then I'll think: "But first, while I feel okay, I'll do the dishes and put a load of laundry in, and make the beds. THEN I'll call."
And by the time I'm a little bit into those chores, I feel the neuro symptoms creeping back in, and I know I won't be calling anyone.
When people call ME, and catch me unaware, I so often enjoy the call because I perhaps have not already done any household chores!
**************************************************
I was thinking about how my prayers have changed. My desires. My wants.
When I first got hurt, and for a few years afterward, I wanted to be back to normal. I wanted my normal life back. I wanted horses and to be able to ride again. I wanted to be able to travel, and to perform again. I just wanted to be the normal, old me again.
Slowly, time creeps by and you learn to settle for less. Okay, I can't do my job anymore and I never will, but I'd like to have just one horse, just for me to ride and only at a walk through the woods. Please Lord.
That fades away, and I readjust and think, "Well, I'll be happy gardening. All I want is to be able to take care of my yard and enjoy it. Yeah, that's it."
Things keep declining and dreams start changing, too.
I find myself happy if I can do light yard stuff, and keep my house clean. Without pain. Maybe never have to wear a CTO or collar again, yeah, that too! Yeah, I can give up everything else, if I could have a life with these things in it, I'd be happy. Oh, and being able to ride in a car to travel a bit though the western states. Okay, Lord?
Next, without thinking of it, I find myself adjusting again. Okay, if I can keep the house clean, and drive half a day's drive away (I mean "ride", not drive. I haven't really driven in 2 years) and work in my yard without leaning over, okay, I can live with that...
Dreams get dialed in again. Right now, I feel like, If I could get up in the morning and not hurt so much. If I could go through the whole day without debilitating pain and weakness, I can live like that. I can learn to do with that.
I guess survival depends upon lowering expectations when necessary.
Saturday, January 24, 2009
Looking Back
Today, I "thought" I might try some sorting through old papers in my office. How I love my office! My husband built the whole office system for me, it's rustic and cowboy-looking. I am truly blessed with it. I need to find an old file cabinet at a 2nd hand store, however. I don't have one, and I have my files in old U-Haul boxes, set up with the hanging folders end-clips over the sides of the boxes to hold the folders.
I found two, large 4-subject notebooks filled with journals I'd written from 2005 through late 2006. I had hoped to read a journal entry in the later one that would tell me the last date I rode a horse. I don't know when it was because I kept trying to ride (I'd ride, but would go shorter distances and then pay dearly when I got back) until I saw Dr. B in NY in Jan. of 2007, and he told me that riding was suicidal for me. "If you fall off, you die." I went home and never rode again. I've only truly been tempted to break my rule once, and that was last summer.
I read a few entries in my journals and I became a bit blue after reading my words. Because I could see true evidence in front of me, in my own handwriting, that I have been suffering pretty much the same way for far too long a time! I was better off back then than I am now, I could do more, but the perspective was the same.
April 2005..."much of my work is at ground level (landscaping) and when I work bent over, I feel energy sucked out of me, I feel headaches and lightheaded."
May 1, 2005..."Didn't sleep that great and felt wide awake with looping thoughts, so decided to get up early and write. I guess I'm upset that even after more than a year, I am still plagued by so many problems." (My injury was April 9, 2004)
As I read through the entries, I'm seeing how confused I was all the time about what exactly was wrong (the docs knew I had suffered the C1 frx...but were telling me it had healed straight and fine...)
May 16, 2005 "Later in the day, felt very fatigued all day. At times, I felt shaky. It seems like I am right back feeling the way I did before." (After my injury, I convalesced 7 months before being allowed back to work (I begged to be sent back to work) training horses. That would have been in about Nov. of 2004. Back on horses, the movement of the horses caused chronic flare ups in neurological symptoms, but I couldn't reason through that because I was being told everything had healed fine, and sometimes was told my symptoms were "emotional." At this writing, where I'm saying I feel worse than before, I'm saying I am feeling worse than closer to the injury date! Before I went back to riding horses. Though at that time, I didn't really understand the impact of riding upon me.)
As I read during this time, I'm amazed at how much I was doing, and to ME, I was doing so little! I'd always worked so hard and fast, loved working, and so as I listed the things I'd done in a day, to me, I was doing little, and I was wondering why I was getting so tired.
May 17, 2005..."I started off kind of okay. Did some housework and practiced half of the May 28 set [I was in a bluegrass band]. I did feel a bit weary, but went out and worked Jedi [the horse I was riding when I broke my neck] a little bit. I was so happy with his willingness and how he's progressing.
"Then I cleaned corrals and filled fly traps and watered fenceline plants. Came in for a quick lunch, then went over to the orchard, put up "Scare Eyes" and mylar on cherries and almonds [to keep birds away] and treated lake [for weeds].
"Came home and painted some on the wainscoting. Made green chile for supper, but started feeling worse and worse. Sleepy, worn out, yet antsy. I went out to the barn and brought in horses and fed them, and then just broke down. Completely. Cried and cried. Felt so much worse than I have felt in a very long time. I still feel terrible as I write this.
"My head is tight and burning. Off and on, my scalp crawls and off and on, I feel numbness in my lips.
"I need to see some kind of specialist! I want to be well. I was so happy on Friday and Saturday, felt strong and clear-headed. I slipped so easily into my old self."
How my words reflect my inner struggles! I didn't want to be replaced on the ranch. I worried about my job and if I couldn't do it, how we could live without both incomes. I worried about not keeping up with all the chores I had done pre injury. Worrying about the band and letting them down if I could not do a gig with them. Worried about watching another horse trainer do my job, watching them riding "my" horses out my bedroom window.
June 7, 2005 "By the time I came inside from mowing weeds, everything seemed to deteriorate. While mowing, I had burning pain on the outsides of my upper arms. Later, I hardly had any grip, and my feet were the worst! Weak, especially on the bottoms and at my ankles. Hands weak. Strong burning and tingling in right ankle, leg and foot."
June 15, 2005 "I felt pretty good all day. I did work Jedi, though I felt pretty weak. During the riding, I felt very weak and uncomfortable, sometimes painful. Now, trotting feels painful and tiring, and cantering is worse. I always like to ride a horse "outside" after arena work, usually riding across the river or across the road. Today, all I can muster is a quick trip around the house.
"It is hard to see what you love slipping away."
June 18, 2005
"Hate to report it, but how awful I feel just now. My bosses will be here in 30 minutes to ride. I have Jedi and Shadow saddled and in their stalls eating hay. I am sitting under the porch of the barn where I catch the northern breeze which is rustling through the fruitless pear trees.
"I probably did too much yesterday. I felt good enough to do it all and I felt it needed to be done. This morning, I did saddle four horses and four children took some lessons. I did tell my boss that I was just too weak to stand in the arena [to give lessons].
"Now, I feel very weak in my feet and legs, my feet now are painful and I feel fatigue all over.I feel too tired to even write. Normally, at a point like this where I'm waiting for riders, I'd be "making good use of my time," cleaning corrals, pulling weeds, straightening up. But my legs and feet have progressively gotten so much worse. I do worry that whatever this is...is it going to become worse and worse to where I'm in a wheelchair? "
Back to the present, and what hit me as I read this journal earlier today was: I've been suffering for a long time! That was four years ago, and I'd been hurt over a year earlier. And what I thought was suffering back then, it was nothing compared to today.
What will my journal read in another five years?
I found two, large 4-subject notebooks filled with journals I'd written from 2005 through late 2006. I had hoped to read a journal entry in the later one that would tell me the last date I rode a horse. I don't know when it was because I kept trying to ride (I'd ride, but would go shorter distances and then pay dearly when I got back) until I saw Dr. B in NY in Jan. of 2007, and he told me that riding was suicidal for me. "If you fall off, you die." I went home and never rode again. I've only truly been tempted to break my rule once, and that was last summer.
I read a few entries in my journals and I became a bit blue after reading my words. Because I could see true evidence in front of me, in my own handwriting, that I have been suffering pretty much the same way for far too long a time! I was better off back then than I am now, I could do more, but the perspective was the same.
April 2005..."much of my work is at ground level (landscaping) and when I work bent over, I feel energy sucked out of me, I feel headaches and lightheaded."
May 1, 2005..."Didn't sleep that great and felt wide awake with looping thoughts, so decided to get up early and write. I guess I'm upset that even after more than a year, I am still plagued by so many problems." (My injury was April 9, 2004)
As I read through the entries, I'm seeing how confused I was all the time about what exactly was wrong (the docs knew I had suffered the C1 frx...but were telling me it had healed straight and fine...)
May 16, 2005 "Later in the day, felt very fatigued all day. At times, I felt shaky. It seems like I am right back feeling the way I did before." (After my injury, I convalesced 7 months before being allowed back to work (I begged to be sent back to work) training horses. That would have been in about Nov. of 2004. Back on horses, the movement of the horses caused chronic flare ups in neurological symptoms, but I couldn't reason through that because I was being told everything had healed fine, and sometimes was told my symptoms were "emotional." At this writing, where I'm saying I feel worse than before, I'm saying I am feeling worse than closer to the injury date! Before I went back to riding horses. Though at that time, I didn't really understand the impact of riding upon me.)
As I read during this time, I'm amazed at how much I was doing, and to ME, I was doing so little! I'd always worked so hard and fast, loved working, and so as I listed the things I'd done in a day, to me, I was doing little, and I was wondering why I was getting so tired.
May 17, 2005..."I started off kind of okay. Did some housework and practiced half of the May 28 set [I was in a bluegrass band]. I did feel a bit weary, but went out and worked Jedi [the horse I was riding when I broke my neck] a little bit. I was so happy with his willingness and how he's progressing.
"Then I cleaned corrals and filled fly traps and watered fenceline plants. Came in for a quick lunch, then went over to the orchard, put up "Scare Eyes" and mylar on cherries and almonds [to keep birds away] and treated lake [for weeds].
"Came home and painted some on the wainscoting. Made green chile for supper, but started feeling worse and worse. Sleepy, worn out, yet antsy. I went out to the barn and brought in horses and fed them, and then just broke down. Completely. Cried and cried. Felt so much worse than I have felt in a very long time. I still feel terrible as I write this.
"My head is tight and burning. Off and on, my scalp crawls and off and on, I feel numbness in my lips.
"I need to see some kind of specialist! I want to be well. I was so happy on Friday and Saturday, felt strong and clear-headed. I slipped so easily into my old self."
How my words reflect my inner struggles! I didn't want to be replaced on the ranch. I worried about my job and if I couldn't do it, how we could live without both incomes. I worried about not keeping up with all the chores I had done pre injury. Worrying about the band and letting them down if I could not do a gig with them. Worried about watching another horse trainer do my job, watching them riding "my" horses out my bedroom window.
June 7, 2005 "By the time I came inside from mowing weeds, everything seemed to deteriorate. While mowing, I had burning pain on the outsides of my upper arms. Later, I hardly had any grip, and my feet were the worst! Weak, especially on the bottoms and at my ankles. Hands weak. Strong burning and tingling in right ankle, leg and foot."
June 15, 2005 "I felt pretty good all day. I did work Jedi, though I felt pretty weak. During the riding, I felt very weak and uncomfortable, sometimes painful. Now, trotting feels painful and tiring, and cantering is worse. I always like to ride a horse "outside" after arena work, usually riding across the river or across the road. Today, all I can muster is a quick trip around the house.
"It is hard to see what you love slipping away."
June 18, 2005
"Hate to report it, but how awful I feel just now. My bosses will be here in 30 minutes to ride. I have Jedi and Shadow saddled and in their stalls eating hay. I am sitting under the porch of the barn where I catch the northern breeze which is rustling through the fruitless pear trees.
"I probably did too much yesterday. I felt good enough to do it all and I felt it needed to be done. This morning, I did saddle four horses and four children took some lessons. I did tell my boss that I was just too weak to stand in the arena [to give lessons].
"Now, I feel very weak in my feet and legs, my feet now are painful and I feel fatigue all over.I feel too tired to even write. Normally, at a point like this where I'm waiting for riders, I'd be "making good use of my time," cleaning corrals, pulling weeds, straightening up. But my legs and feet have progressively gotten so much worse. I do worry that whatever this is...is it going to become worse and worse to where I'm in a wheelchair? "
Back to the present, and what hit me as I read this journal earlier today was: I've been suffering for a long time! That was four years ago, and I'd been hurt over a year earlier. And what I thought was suffering back then, it was nothing compared to today.
What will my journal read in another five years?
more testing...more questions
It's been a rough few days.
Today, besides pain that took 3 doses of oxycodone to finally get under control, I just felt off. My head feels heavy on my neck, and when I sit down to rest, the back of my head hurts as I lean against the soft recliner.
Dr. Bolognese describes the instability in a verbal picture of a pumpkin balancing on top of a pencil.
I spent most of the day in bed. When out of bed, I was restless. Standing up hurt, moving hurt, sitting and resting hurt and in my brain, everything felt off.
Late in the afternoon, I laid down for 90 minutes and when I got up about 15 minutes ago, what a difference. Still weak, but the pain in the skull base is gone, my brain feels clear.
This is my self-treatment every day, lying down several times to take the weight of my head off of my spine. It serves much the same as sitting in traction, except I don't end up in as much pain after lying down as I do post-traction.
One thing new I've noticed is I experience nystagmus now. Officially, after some research, I'd say I am experiencing Spontaneous downbeat nystagmus. Nystagmus is involuntary movement of the eyes. You can see this on American's Funniest Home Videos when they twirl the cat on the office chair and when the chair stops, the cat's eyes continue to go back and forth.
There seems to be various kinds of this condition, some are congenital and some are related to head trauma and various neurological conditions. I never gave it any thought, although I have noticed lately some big changes in my vision. I have lightning flashes off to the sides, I have trouble with blurriness at times (and not at all at others), floaters, and now this.
I know I have it because a couple of times now, out of the blue, what I'm looking at quickly dips down in my field of vision, and then back up. It will go a couple of times. And then it is over.
Lately, I've also had an ocular migraine, something I've had before injury, but not in a long time.
I just read this quote on Wikipedia about pathological nystagmus:
"If the pathologic nystagmus is based in the central nervous system (CNS), such as with a cerebellar problem, the nystagmus can be in any direction including horizontal. Purely vertical nystagmus is usually central in origin."
What I have experienced has been "purely vertical." I'm not surprised that it would be a sign of CNS damage since that is what I have (spinal cord).
I have thought, back there in the ol' brain, lately about going to a neuro-opthamologist. I almost wonder if I am now experiencing some CSF flow issues, with different sensations I've been feeling lately. More pain up on top of the head, more actual headaches, and the vision situation.
Actually, the plan I have formed right now, is: as soon as I get the report from the new endocrinologist, I will go ahead and schedule another consult in NY. I need to talk to my surgeon. I have feared that he will insist I go home in a halo...but lately, even a halo is starting to make sense.
Speaking of the endocrinologist...I saw him on Jan. 15 and he had another DEXA scan done, and also pulled 8 vials of blood. I am anxious to find out what he finds in these test results. I called OHSU and was told that they will mail me the report and results as soon as they come in.
Today in the mail, I received 3 more lab orders from Dr. Madison at OHSU. I can have these done here, don't have to travel to Portland. They are for a 24-hour urine test to test calcium. I'm used to these, I do these every year for the pre condition to mulitple myeloma I have.
Another one is for creatinine, which I would have thought he'd have tested with the blood they took in Portland, that is pretty common to test for.
And the other is another 24 hour urine to test for telopeptide.
I know what the calcium test is for. If they find too much calcium in your urine, then it is evident that you are losing bone either due to bone cancer or osteopenia/porosis.
I feel good about this endocrinologist being thorough, though I wish I knew what the call for extra testing "means." Does it mean he is just being thorough as he makes a decision for me to get surgery or not? Or does it mean he's found something of concern, and that is why he needs to take more blood and urine? I'm not concerned about it, I've been through too much to not have learned that there is no sense in being worried about something I'll not learn until I learn it!
I already had an appointment for Feb. 17 with my hematologist/oncologist for the lab work I get every six months for the MGUS (monoclonal gammopathy, the MM precondition). And I am sure they will test for creatinine then. But on Monday, I'll go ahead and set up to have blood drawn...when I will take in the cute jug filled from my 24-hour urine collection. Such fun!
I try not to get my hopes up. I WANT to think that Dr. Madison has talked to Dr. B in NY. That my labs and DEXA looked pretty good and there's a chance I can go for the fusion. That Dr. M is being cautious and thorough by ordering these extra tests, and that I will receive a phone call soon that will say, "Your bones are great! I talked to Dr. B and we both agree, you are a good candidate for the fusion, so he's setting you up within the month!"
Dr. B told me last May that when I was ready for the fusion, he'd fit me into his surgical schedule within 30 days.
I WANT to think those things...
but I know better than to dream of it...at all.
Today, besides pain that took 3 doses of oxycodone to finally get under control, I just felt off. My head feels heavy on my neck, and when I sit down to rest, the back of my head hurts as I lean against the soft recliner.
Dr. Bolognese describes the instability in a verbal picture of a pumpkin balancing on top of a pencil.
I spent most of the day in bed. When out of bed, I was restless. Standing up hurt, moving hurt, sitting and resting hurt and in my brain, everything felt off.
Late in the afternoon, I laid down for 90 minutes and when I got up about 15 minutes ago, what a difference. Still weak, but the pain in the skull base is gone, my brain feels clear.
This is my self-treatment every day, lying down several times to take the weight of my head off of my spine. It serves much the same as sitting in traction, except I don't end up in as much pain after lying down as I do post-traction.
One thing new I've noticed is I experience nystagmus now. Officially, after some research, I'd say I am experiencing Spontaneous downbeat nystagmus. Nystagmus is involuntary movement of the eyes. You can see this on American's Funniest Home Videos when they twirl the cat on the office chair and when the chair stops, the cat's eyes continue to go back and forth.
There seems to be various kinds of this condition, some are congenital and some are related to head trauma and various neurological conditions. I never gave it any thought, although I have noticed lately some big changes in my vision. I have lightning flashes off to the sides, I have trouble with blurriness at times (and not at all at others), floaters, and now this.
I know I have it because a couple of times now, out of the blue, what I'm looking at quickly dips down in my field of vision, and then back up. It will go a couple of times. And then it is over.
Lately, I've also had an ocular migraine, something I've had before injury, but not in a long time.
I just read this quote on Wikipedia about pathological nystagmus:
"If the pathologic nystagmus is based in the central nervous system (CNS), such as with a cerebellar problem, the nystagmus can be in any direction including horizontal. Purely vertical nystagmus is usually central in origin."
What I have experienced has been "purely vertical." I'm not surprised that it would be a sign of CNS damage since that is what I have (spinal cord).
I have thought, back there in the ol' brain, lately about going to a neuro-opthamologist. I almost wonder if I am now experiencing some CSF flow issues, with different sensations I've been feeling lately. More pain up on top of the head, more actual headaches, and the vision situation.
Actually, the plan I have formed right now, is: as soon as I get the report from the new endocrinologist, I will go ahead and schedule another consult in NY. I need to talk to my surgeon. I have feared that he will insist I go home in a halo...but lately, even a halo is starting to make sense.
Speaking of the endocrinologist...I saw him on Jan. 15 and he had another DEXA scan done, and also pulled 8 vials of blood. I am anxious to find out what he finds in these test results. I called OHSU and was told that they will mail me the report and results as soon as they come in.
Today in the mail, I received 3 more lab orders from Dr. Madison at OHSU. I can have these done here, don't have to travel to Portland. They are for a 24-hour urine test to test calcium. I'm used to these, I do these every year for the pre condition to mulitple myeloma I have.
Another one is for creatinine, which I would have thought he'd have tested with the blood they took in Portland, that is pretty common to test for.
And the other is another 24 hour urine to test for telopeptide.
I know what the calcium test is for. If they find too much calcium in your urine, then it is evident that you are losing bone either due to bone cancer or osteopenia/porosis.
I feel good about this endocrinologist being thorough, though I wish I knew what the call for extra testing "means." Does it mean he is just being thorough as he makes a decision for me to get surgery or not? Or does it mean he's found something of concern, and that is why he needs to take more blood and urine? I'm not concerned about it, I've been through too much to not have learned that there is no sense in being worried about something I'll not learn until I learn it!
I already had an appointment for Feb. 17 with my hematologist/oncologist for the lab work I get every six months for the MGUS (monoclonal gammopathy, the MM precondition). And I am sure they will test for creatinine then. But on Monday, I'll go ahead and set up to have blood drawn...when I will take in the cute jug filled from my 24-hour urine collection. Such fun!
I try not to get my hopes up. I WANT to think that Dr. Madison has talked to Dr. B in NY. That my labs and DEXA looked pretty good and there's a chance I can go for the fusion. That Dr. M is being cautious and thorough by ordering these extra tests, and that I will receive a phone call soon that will say, "Your bones are great! I talked to Dr. B and we both agree, you are a good candidate for the fusion, so he's setting you up within the month!"
Dr. B told me last May that when I was ready for the fusion, he'd fit me into his surgical schedule within 30 days.
I WANT to think those things...
but I know better than to dream of it...at all.
Wednesday, January 21, 2009
That tender, broken place
"For a broken and contrite heart, God will not refuse."
It's funny how God works sometimes...
Last night, having fun typing up names of horses that for the most part, it's their photos I recall. Horses that, for the most part, are no longer grazing the good, green pastures of earth.
Just now, a close friend who'd read that post sent a poem to me by a tender-hearted cowboy poet, a piece about his father listing the names of the horses he'd known. The poem, perfect in every letter, hit too close to the bone...too close to the nerve, and I know something about nerves.
I started to cry a bit, you know what I mean...that part of you that you call your heart, the Bible calls your heart, but it feels deeper than that invaluable organ, and it, that fragile and very real place inside you that rarely is felt, seems to arise from the center of your brain, not your chest, just like pain, which scientists say starts in the brain, not in the wound. Like lightning amazingly starts in the ground, not in the heavens the way our eyes tell us is true.
Tender-hearted, I left the page that poem lay upon, needing to step away from the precipice of falling into that place, that cavern of what is real and pure. It hurts too much, physically. So, I came here to this blog, to read those horses' epithets again, but God had holy plans.
The music on this site began to play, and Casting Crowns sang their annointed words, "Who I am." And I suddenly stopped reading the mundane words I'd written.
And something tugged at something deeper.
And I didn't step back this time.
I allowed it, I heard the lyrics, the instruments, the harmonies, the power in the notes, the blendings of the strings, piano, drums, all voices coming together in something deep but High.
Deep...but High.
Heavenly music, words about me. I am nothing. I am nothing, my brain cried from behind my burning eyes. I know the truth of that, but to feel it again...I am a flower quickly fading, a wave tossed in the ocean, a vapor in the wind, still You hear me when I'm calling, You catch me when I'm falling and told me who I am....I am Yours....
deep...but high.
Then the next song, Casting Crowns again, "I will praise you in this storm." Listen to the words...FEEL them....t r y
deep...but high
...and holy.
I thought by now You'd have come down and wiped away our tears. Yet I am left here crying, and after I say Amen, it's still raining, and yes, I will lift my hands, I will praise You in this storm, and though my heart is torn, I will praise You in this storm...
My aching throat whispering the lyrics because singing brings pain, my aching arms lifted to Him, worthy, the "maker of heaven and earth," my nose runs, my tears run, my hands hold up my heavy head which my weak neck cannot hold, so that I feel my tears running down my forearms to my elbows, to the desk, and I see myself, being rolled into surgery, that lonely, lonely road down whitewashed, cold halls with staff joking with each other but not with you, not with you, you are heading for no-man's land and uncertainty and it takes faith to do it, and knowing He is there, in the power of these words...
Jesus take the wheel....save me from this road I'm on....I'm letting go, so give me one more chance oh, Jesus take the wheel....
and words I'd sung cut deep
deep...but high
and voices given by God ring out His praises and, in that tender moment, I thought of you, and prayed that every reader here hears this music, has their volume turned up, hears these words, and no, they may not cut deep this time, but you too will someday be in that tender spot...
deep...but high...
I listened to them so many times when their words held truth for me, but not from inside that deep, tender place that we avoid yet we long for
I prayed, please Lord, let them hear this, let them hear You....to find that deep deep profound place, broken, tender, pure, honest, bare, painful, beautiful, intense, unearthly, surreal yet real, what truly, oh God, what Heaven must be, what Heaven is, this place deep inside all of us, in that brain, where all the time, we think and think and think, and our thoughts own us, but once in a spiritual moment, we touch heaven and it is there, there, behind our eyes...
deep but high
It's funny how God works sometimes...
Last night, having fun typing up names of horses that for the most part, it's their photos I recall. Horses that, for the most part, are no longer grazing the good, green pastures of earth.
Just now, a close friend who'd read that post sent a poem to me by a tender-hearted cowboy poet, a piece about his father listing the names of the horses he'd known. The poem, perfect in every letter, hit too close to the bone...too close to the nerve, and I know something about nerves.
I started to cry a bit, you know what I mean...that part of you that you call your heart, the Bible calls your heart, but it feels deeper than that invaluable organ, and it, that fragile and very real place inside you that rarely is felt, seems to arise from the center of your brain, not your chest, just like pain, which scientists say starts in the brain, not in the wound. Like lightning amazingly starts in the ground, not in the heavens the way our eyes tell us is true.
Tender-hearted, I left the page that poem lay upon, needing to step away from the precipice of falling into that place, that cavern of what is real and pure. It hurts too much, physically. So, I came here to this blog, to read those horses' epithets again, but God had holy plans.
The music on this site began to play, and Casting Crowns sang their annointed words, "Who I am." And I suddenly stopped reading the mundane words I'd written.
And something tugged at something deeper.
And I didn't step back this time.
I allowed it, I heard the lyrics, the instruments, the harmonies, the power in the notes, the blendings of the strings, piano, drums, all voices coming together in something deep but High.
Deep...but High.
Heavenly music, words about me. I am nothing. I am nothing, my brain cried from behind my burning eyes. I know the truth of that, but to feel it again...I am a flower quickly fading, a wave tossed in the ocean, a vapor in the wind, still You hear me when I'm calling, You catch me when I'm falling and told me who I am....I am Yours....
deep...but high.
Then the next song, Casting Crowns again, "I will praise you in this storm." Listen to the words...FEEL them....t r y
deep...but high
...and holy.
I thought by now You'd have come down and wiped away our tears. Yet I am left here crying, and after I say Amen, it's still raining, and yes, I will lift my hands, I will praise You in this storm, and though my heart is torn, I will praise You in this storm...
My aching throat whispering the lyrics because singing brings pain, my aching arms lifted to Him, worthy, the "maker of heaven and earth," my nose runs, my tears run, my hands hold up my heavy head which my weak neck cannot hold, so that I feel my tears running down my forearms to my elbows, to the desk, and I see myself, being rolled into surgery, that lonely, lonely road down whitewashed, cold halls with staff joking with each other but not with you, not with you, you are heading for no-man's land and uncertainty and it takes faith to do it, and knowing He is there, in the power of these words...
Jesus take the wheel....save me from this road I'm on....I'm letting go, so give me one more chance oh, Jesus take the wheel....
and words I'd sung cut deep
deep...but high
and voices given by God ring out His praises and, in that tender moment, I thought of you, and prayed that every reader here hears this music, has their volume turned up, hears these words, and no, they may not cut deep this time, but you too will someday be in that tender spot...
deep...but high...
I listened to them so many times when their words held truth for me, but not from inside that deep, tender place that we avoid yet we long for
I prayed, please Lord, let them hear this, let them hear You....to find that deep deep profound place, broken, tender, pure, honest, bare, painful, beautiful, intense, unearthly, surreal yet real, what truly, oh God, what Heaven must be, what Heaven is, this place deep inside all of us, in that brain, where all the time, we think and think and think, and our thoughts own us, but once in a spiritual moment, we touch heaven and it is there, there, behind our eyes...
deep but high
Subscribe to:
Posts (Atom)