Hey, Diana, I got your great messages, back on the post "hindsight is 20/20." I wrote you back. Hope you see this and will get back in touch with me. It would be nice to have someone else to touch base with...I've met a two others with Jefferson Frx who have contacted me through this blog: Janice and Krista. Would love to hear more of your story and get to know you better. Check out my message to you.
Chuck and Laurene, I got your email. Sometimes, when I email you, it bounces back to me. Perhaps your email inbox is full? I know you have tons of friends!!
hugs
BHG
Monday, September 14, 2009
A phone interview this morning...
As it happened, this morning I had a phone interview with one of my "agreed medical examiners" who is making a consideration/decision on if I'm "permanent and stationary" yet, and, if so, what percentage I am permanently disabled.
This doctor has been wonderful in the past; I've seen him twice before and his reports have been spot-on for me; he has reported, for example, that, for over five years, I have been searching for help. I had to explain to him everything that happened in New York, and that mess, since a report was filed with my work comp insurance that my C1 had "spontaneously healed" and whatever I have must be Lyme or something (ridiculous).
He listened to every word without interruption. He let me read, word for word, what I wrote this morning in the midst of a very painful "neuro" event. I posted this verbatim under the topic titled, Primal Voice. This doctor was so honoring.
He asked the perfect, pointed questions and did not editorialize. How much can you lift? Can you lift a gallon of milk (yes, but I feel it at the back of my skull). Can you lift two gallons (yes, but the pain at the back of the skull would make me put it right back down).
He asked me who is taking care of my neck right now (No one. All I have is my primary, who states he is "not the Mayo Clinic" and "knows nothing about anything that is going on with me, but just will keep me plugged into the resources I need") The examiner did "editorialize" at that point, just a little. He asked me, "If he knows nothing about your situation, how can he "keep you plugged into the resources you need?"
He also asked me if I had a major event with my neck, what would I do right now?
Before I replied, I told him that I feel like an airplane pilot who is always looking, as she flies, for someplace to have a crash landing. Then I told him I'd heard of an orthopedic surgeon at OHSU in Portland, OR who worked on someone I'd met and did a good job. The examiner then asked me how far away OHSU is, and I said 2 hours.
I see 3 of these AME's (the one today is an orthopedic surgeon, the others are a neuropsychologist and a neurologist). I have phone interviews with the other 2 scheduled later this month and in October.
I got a little weepy with him, telling him I desperately need a doctor, someone who really wants to figure this out, no politics etc. Of course, I still believe that everything I was told in New York in the past is what is truly happening, that it's craniocervical instability and "severe" functional cranial settling.
God has blessed me. This doctor holds my future in his hands, as he decides financially and medically what I will need in the future. And God has given me trust in this doctor from the reports he's filed before. He's very business-like, no nonsense at those times when I see him or talk to him. But when he files his reports, he really seems to "get" the bad situation I'm in.
This doctor has been wonderful in the past; I've seen him twice before and his reports have been spot-on for me; he has reported, for example, that, for over five years, I have been searching for help. I had to explain to him everything that happened in New York, and that mess, since a report was filed with my work comp insurance that my C1 had "spontaneously healed" and whatever I have must be Lyme or something (ridiculous).
He listened to every word without interruption. He let me read, word for word, what I wrote this morning in the midst of a very painful "neuro" event. I posted this verbatim under the topic titled, Primal Voice. This doctor was so honoring.
He asked the perfect, pointed questions and did not editorialize. How much can you lift? Can you lift a gallon of milk (yes, but I feel it at the back of my skull). Can you lift two gallons (yes, but the pain at the back of the skull would make me put it right back down).
He asked me who is taking care of my neck right now (No one. All I have is my primary, who states he is "not the Mayo Clinic" and "knows nothing about anything that is going on with me, but just will keep me plugged into the resources I need") The examiner did "editorialize" at that point, just a little. He asked me, "If he knows nothing about your situation, how can he "keep you plugged into the resources you need?"
He also asked me if I had a major event with my neck, what would I do right now?
Before I replied, I told him that I feel like an airplane pilot who is always looking, as she flies, for someplace to have a crash landing. Then I told him I'd heard of an orthopedic surgeon at OHSU in Portland, OR who worked on someone I'd met and did a good job. The examiner then asked me how far away OHSU is, and I said 2 hours.
I see 3 of these AME's (the one today is an orthopedic surgeon, the others are a neuropsychologist and a neurologist). I have phone interviews with the other 2 scheduled later this month and in October.
I got a little weepy with him, telling him I desperately need a doctor, someone who really wants to figure this out, no politics etc. Of course, I still believe that everything I was told in New York in the past is what is truly happening, that it's craniocervical instability and "severe" functional cranial settling.
God has blessed me. This doctor holds my future in his hands, as he decides financially and medically what I will need in the future. And God has given me trust in this doctor from the reports he's filed before. He's very business-like, no nonsense at those times when I see him or talk to him. But when he files his reports, he really seems to "get" the bad situation I'm in.
Primal Voice
This morning, I woke up weak and sorta okay, but as usual, about five minutess of being up (and the weight of my head going all upon my spine and nerves etc), I got hit bad.
I had not done anything which caused this. In fact, believe it or not, I have not been out of the yard, not even across the street to get the mail, since I got home last Tuesday!
I wrote these things in the midst of that pain:
"There's something profoundly wrong. There's a lesion somewhere that no one is seeing. I'm no expert, just living in this body. Something is WRONG from the spinal cord. The pain is so profound--this morning---like being in a microwave [oven].
I hurt so terribly-- I need help. I need help. I need a truly excellent devoted doctor to look deeply-- maybe surgery is not the answer, but something is wrong. Somehow I got mixed up in politics [with neurosurgeons]. I've fought hard for myself for five years and no one else but me. I'm to the point of pain and weakness now, I wish I had a true advocate.
I don't have strength and in too much pain to fight anymore. Some mornings worse than others, this morning BAD and I feel exactly as bad as I did right out of the Tethered Cord surgery, which shows me it's spinal cord because the TC surgery was messing with the cord. When I yawn, piercing pain to right ear. Have to have fan 6" from my mouth when I go to bed [in order to keep breathing]...it's not the oxycodone, I'm on such low dose.
*****************************************************************
They say pain is truly hard to remember. If it were not so, there would be no second children born!
I include this, just to remind myself of what I was feeling.
I had not done anything which caused this. In fact, believe it or not, I have not been out of the yard, not even across the street to get the mail, since I got home last Tuesday!
I wrote these things in the midst of that pain:
"There's something profoundly wrong. There's a lesion somewhere that no one is seeing. I'm no expert, just living in this body. Something is WRONG from the spinal cord. The pain is so profound--this morning---like being in a microwave [oven].
I hurt so terribly-- I need help. I need help. I need a truly excellent devoted doctor to look deeply-- maybe surgery is not the answer, but something is wrong. Somehow I got mixed up in politics [with neurosurgeons]. I've fought hard for myself for five years and no one else but me. I'm to the point of pain and weakness now, I wish I had a true advocate.
I don't have strength and in too much pain to fight anymore. Some mornings worse than others, this morning BAD and I feel exactly as bad as I did right out of the Tethered Cord surgery, which shows me it's spinal cord because the TC surgery was messing with the cord. When I yawn, piercing pain to right ear. Have to have fan 6" from my mouth when I go to bed [in order to keep breathing]...it's not the oxycodone, I'm on such low dose.
*****************************************************************
They say pain is truly hard to remember. If it were not so, there would be no second children born!
I include this, just to remind myself of what I was feeling.
Ligament damage; describing central pain
I have so often notice (mostly every day) that my hands do not seem to belong to me.
I see my hands out in front of me getting a bowl from the cabinet, petting the dog, and there seems to be a "disconnect" between my brain and my upper appendages. Lying in bed at night, if I stop to think about where my hands are, without moving them, I really do not know. I might have my arm up, under my pillow, or down along my side. If I do not move my arm, then I do not really know for sure where my arms are.
I've noticed this while picking berries this fall, as well. Someone else's hands seem to snake out in front of me and start doing things! It's truly very strange!
While flying to New York in June, I watched the flight attendant reach up into a high cabinet for something, her arms and hands a graceful part of her body. And it reminded me strongly of how different the feeling is for me.
When I saw one of the neurosurgeons in NY (not the one I've seen for three years), though he had just met me and had not studied my imaging, though he had not done a personal neurological evaluation, he lashed out at me that I did not suffer any ligamentous injury when I broke my neck (thus defying the diagnosis of my main neurosurgeon at the time).
Such an experience left me very upset and defensive (this was only a small part of this surgeon's accusations), so I remember going back to the hotel and getting onto the internet and looking up cervical ligamentous injury. I was most surprised to see that one of the symptoms of damage to the cervical ligaments is this sensation that your hands and arms are not connected to the rest of your body!
In Jan. 2007, I was told (at The Chiari Institute) that I had "ripped, tore, ruptured, broke" ALL of my ligaments when I broke my neck. Of course, this made perfect sense because this explained why the C1 was allowed to spread and was not pulled back into place after the injury, why it has stayed "apart" and not healed.
I write this now just to record for myself this interesting finding. I have not heard from others I know on the internet that they suffer from this strange sensation (not to say that they don't), but found it very enlightening that this particular symptom is actually a symptom of ligament damage.
I'm going to try to find this information again on the net, and when I do, I'll post it here.
***************************************************************
I've written here many times that I struggle to find the words to describe the pain and strange sensations I deal with every day from this injury. The other day, as I prepared to lean down to turn off the faucet outside that was watering the lawn, the familiar burn from deep inside of me started to come to the surface; the sweat popped out in beads on the back of my neck and scalp; my hair follicles became painful (piloerection); and I felt overcome with painful weakness.
And the thought came to mind: I'm in a microwave oven, sizzling from the inside out. I'm like that proverbial poodle of urban legend. Every day, several times a day, I'm being "nuked!"
*******************************************
The weakness in my hands and arms is progressing, and I made notes about some of the things I'm struggling with. Doorknobs, typing, opening jars, water faucets, pressing buttons, squeezing things with fingers. And writing. I noticed I now do not write the two "dots" that come between the hour and the minutes when you write down a note of "time." I do this time recording five to six times a day, when I take an oxycodone, and one of the things that has made this easier is to eliminate the two "dots." Is there a name for those dots? Ah, I remember: a colon!
**********************************************
When you are in therapy, you are always self-diagnosing. It's sort of funny. You wonder if what you say, even as you are defending your sanity, is the very thing that is causing the therapist to believe you are crazy. When you are having difficulty getting a physical diagnosis, getting doctors to pay attention that there is a physical and anatomical reason why you are hurting, you worry that anything you say to them or to therapists is giving them fodder to believe that you're nuts, and all of your symptoms come from that level of nuttiness you have.
I remember when I was in the midst of my six months of speech therapy immediately following my injury. I finally admitted to my ST something that I knew would cause her to believe I needed to be straight-jacketed and hauled to the State Hospital, do not pass Go, do not collect $200!
I told her, "I play about ten games of Spyder Solitaire on the computer every day."
She said, in obvious shock, "REALLY?"
...
...
...
....
"I play about fifteen games of Spyder a day!! What level are you at?" she cried.
I had to admit to her then that I was really downplaying my weakness and at the time, I was playing more like 20 games a day.
I guess it goes to show that the ones who sit in judgment of us are just as apt as we are to have their own stages of looniness!
;-)
I see my hands out in front of me getting a bowl from the cabinet, petting the dog, and there seems to be a "disconnect" between my brain and my upper appendages. Lying in bed at night, if I stop to think about where my hands are, without moving them, I really do not know. I might have my arm up, under my pillow, or down along my side. If I do not move my arm, then I do not really know for sure where my arms are.
I've noticed this while picking berries this fall, as well. Someone else's hands seem to snake out in front of me and start doing things! It's truly very strange!
While flying to New York in June, I watched the flight attendant reach up into a high cabinet for something, her arms and hands a graceful part of her body. And it reminded me strongly of how different the feeling is for me.
When I saw one of the neurosurgeons in NY (not the one I've seen for three years), though he had just met me and had not studied my imaging, though he had not done a personal neurological evaluation, he lashed out at me that I did not suffer any ligamentous injury when I broke my neck (thus defying the diagnosis of my main neurosurgeon at the time).
Such an experience left me very upset and defensive (this was only a small part of this surgeon's accusations), so I remember going back to the hotel and getting onto the internet and looking up cervical ligamentous injury. I was most surprised to see that one of the symptoms of damage to the cervical ligaments is this sensation that your hands and arms are not connected to the rest of your body!
In Jan. 2007, I was told (at The Chiari Institute) that I had "ripped, tore, ruptured, broke" ALL of my ligaments when I broke my neck. Of course, this made perfect sense because this explained why the C1 was allowed to spread and was not pulled back into place after the injury, why it has stayed "apart" and not healed.
I write this now just to record for myself this interesting finding. I have not heard from others I know on the internet that they suffer from this strange sensation (not to say that they don't), but found it very enlightening that this particular symptom is actually a symptom of ligament damage.
I'm going to try to find this information again on the net, and when I do, I'll post it here.
***************************************************************
I've written here many times that I struggle to find the words to describe the pain and strange sensations I deal with every day from this injury. The other day, as I prepared to lean down to turn off the faucet outside that was watering the lawn, the familiar burn from deep inside of me started to come to the surface; the sweat popped out in beads on the back of my neck and scalp; my hair follicles became painful (piloerection); and I felt overcome with painful weakness.
And the thought came to mind: I'm in a microwave oven, sizzling from the inside out. I'm like that proverbial poodle of urban legend. Every day, several times a day, I'm being "nuked!"
*******************************************
The weakness in my hands and arms is progressing, and I made notes about some of the things I'm struggling with. Doorknobs, typing, opening jars, water faucets, pressing buttons, squeezing things with fingers. And writing. I noticed I now do not write the two "dots" that come between the hour and the minutes when you write down a note of "time." I do this time recording five to six times a day, when I take an oxycodone, and one of the things that has made this easier is to eliminate the two "dots." Is there a name for those dots? Ah, I remember: a colon!
**********************************************
When you are in therapy, you are always self-diagnosing. It's sort of funny. You wonder if what you say, even as you are defending your sanity, is the very thing that is causing the therapist to believe you are crazy. When you are having difficulty getting a physical diagnosis, getting doctors to pay attention that there is a physical and anatomical reason why you are hurting, you worry that anything you say to them or to therapists is giving them fodder to believe that you're nuts, and all of your symptoms come from that level of nuttiness you have.
I remember when I was in the midst of my six months of speech therapy immediately following my injury. I finally admitted to my ST something that I knew would cause her to believe I needed to be straight-jacketed and hauled to the State Hospital, do not pass Go, do not collect $200!
I told her, "I play about ten games of Spyder Solitaire on the computer every day."
She said, in obvious shock, "REALLY?"
...
...
...
....
"I play about fifteen games of Spyder a day!! What level are you at?" she cried.
I had to admit to her then that I was really downplaying my weakness and at the time, I was playing more like 20 games a day.
I guess it goes to show that the ones who sit in judgment of us are just as apt as we are to have their own stages of looniness!
;-)
Meanderings....
I've kept notes the last few months, things I'd write in my blog if I only had the energy or felt well enough. Maybe I'll throw one of those out here now.
One thing I want to emphasize is that even if I write so often about poor experiences with doctors and tremendous pain, I want you to know that I also have incredible beauty within my life each day.
There is much I view outside our living room window that blesses me, like the little goldfinches, born here in birdhouses built by my husband. I see them clinging with clenched, tiny feet to tall mullein spikes in the garden, to glean the seeds (and spread them, invasive weeds that they are) throughout the county and wherever goldfinches go in the winter!
Young bluebirds and goldfinches and others enjoying the water in our birdbath, looking glad they don't have to make the arduous flight to the river each day.
The garden-fresh salsa I make and freeze. Tomatoes that burden drooping branches, garlic dug up in the back flower bed, cilantro, onion, green chiles growing in the garden, all combine to make a flavorful concoction that gifts me time and time again. When I see it overflowing from the blender; when I see jars full and in the freezer; when I thaw it out and savor it on corn tortilla chips.
Breezes when they pour through the open windows and signal that they have come from the ocean to the west of us.
Late night winds that toss the American flag hung proudly from our front deck.
Soft ears on a dog lying on my lap while I watch TV.
The sight of a small deer, born in our back yard, bedding down out there under the oaks during a storm.
Deadheading flowers, a chore that has always been so quietly therapeutic for me.
***********************************************************************
Please keep in mind that I write what I do, sometimes allowing the "primal voice," so that others who are living with this chronic central nervous system pain can read something with which they relate, and so that those who do not understand this condition can have reasonable understanding and compassion on the ones in their lives who suffer with this, be it Multiple Sclerosis, Chiari Malformation, Syringomyelia, spinal cord injury etc.
PS, the photo above is one I took at Chilkoot Lake in Alaska, just one of those little blessings while we were waiting and hoping for big brown bears to come up the salmon-filled river.
The wound still runs deep...
My husband makes beautiful custom spurs. I handle the "people" part of the business, talking with customers and figuring out what they want. I love doing it, but it also is quite tiring on me. But that's okay. It's a very small business so I don't have to do much of it.
Above is a photo of a pair of spurs that my husband made (not necessarily for me) while I was in the hospital in Nov. 2007. They became my favorites of his creations because they are small and lady-like, and feature bears. I kept them on the windowsill knowing the right woman would come along and love them like I do.
Two years later, the spurs have found a home. Cliff came to our house to order some spurs, bought a fancy bit, headstall and set of matching spurs that we had for sale (E. Garcia, not one of Pete's). And I showed him those little bear spurs. He bought them for his wife.
He said when she got them, that she adored them, took them to Grange and showed them off. He next brought over her new, small pink boots (Justins) for Pete to fit the spurs to the boots, add heel chains and jingle bobs.
What a sweet little set-up that is! I know, a working cowgirl would never wear pink boots, and neither would I back in "the day." But now, I am older and can't ride and that outfit looks so darn cute!
I needed to call Cliff to let him know that CJ's spurs and boots were ready, and I got to talk with CJ herself. Instantly, we found out we are kindred spirits.
She is 63, and rides 3-4x a week, she said. She described a recent ride where she and her riding friend got lost and rode up onto a peak to call Cliff and let him know they'd be late getting home, and then... things all started burning behind my eyes. She and I talked about breeds of horses (she has Peruvian Pasos) and training methods, and everything I know about horses surged to top like cream rising from the mouth of an old milk bottle left on the doorstep years ago on a frosty morn.
We talked about 45 minutes and I knew this was someone I clicked with. But...out of nowhere, I was overcome with hot tears and an inability to talk. I tried to hint that talking about this was hard for me. CJ, bless her heart, didn't get it right away and laughed and continued to talk about riding various horses and "keeping them rode," and such. I tried to speak but was choked up with emotion.
I finally had to tell her, "I'm sorry, but I can't talk about this anymore. You are who I always planned to be, growing old, feisty and foxy and free to ride the hills."
After hanging up, I guess part of the reason might be those little bear spurs. And also, the woman who purchased my dear horse, Shadow, when I realised I'd never be able to ride him, just emailed me and sent me lots of photos of him and her, she expressing her obvious affection for him.
Or...
it's just that some wounds are too deep to heal.
Saturday, September 12, 2009
I must apologize for not posting here in so long. I know I have many followers here who check often to see what is going on, and when I do not post, they think the worst. I appreciate that!
This will be short. I wrote a long blog update on Microsoft Works, intending to use "copy paste" to put it all here. However, in the last few days, and several times tonight, something is wrong with my system or something. When I hit "paste"...internet explorer shuts down.
So, briefly, I'm here.....we went to Alaska and had an incredible time. Even had a close encounter (safe kind) with a grizzly bear! I hope to write more about it later.
I am not going to Bethesda, MD, as it turns out. When I got home from AK, I checked my messages and there was one from the Bethesda doctor telling me, a week before my trip, to cancel my trip, he doesn't see anything on my imaging that shows anything he can surgically do for me.
I cried hard that night. I was so shocked. I had made the appt six weeks before! A dear friend in Maine had purchased tickets for herself and her husband to be there to help me get around. I felt hopeless, and lost all faith in the medical system. I was angry too. And yes, I asked God, "Why?" Why have me make these appointments only to be let down like this?
I questioned, to myself, why did this happen, why did the surgeon say he saw something in my imaging that made him want to see me, only to, a week before my trip, call and tell me he was cancelling my appt? I could only believe that something happened that had nothing to do with my imaging or what could be done for me...something happened to where he did not want me for a patient.
So, I know many of you are writing to me, wishing me well on my trip, but it happens I'm not going. At this point, I'm without a doctor in terms of a neurosurgeon. And mentally, I'm at the point where I'm going to just live with what I have, if it all continues to decline, I have to accept that this is my lot in life.
Of course, I might change my mind later, I might decide I need to see a surgeon, but in order to carry on, to pick myself up and dust myself off, I need to think that I'm just going to stay home and deal with what I have the best way I can. That there just isn't a "fix" for me. Short of a miracle.
So, good night and I hope I can get back on here soon. I think often of posts I want to make, of beautiful things I get to enjoy out the window. I want to share about Alaska, it is completely "as advertised!"
If I owe you an email, I'm sorry. I think of each of you all the time, truly I do. But answering emails seems continue to be difficult. But I'll try.
love to you
"By His Grace"
This will be short. I wrote a long blog update on Microsoft Works, intending to use "copy paste" to put it all here. However, in the last few days, and several times tonight, something is wrong with my system or something. When I hit "paste"...internet explorer shuts down.
So, briefly, I'm here.....we went to Alaska and had an incredible time. Even had a close encounter (safe kind) with a grizzly bear! I hope to write more about it later.
I am not going to Bethesda, MD, as it turns out. When I got home from AK, I checked my messages and there was one from the Bethesda doctor telling me, a week before my trip, to cancel my trip, he doesn't see anything on my imaging that shows anything he can surgically do for me.
I cried hard that night. I was so shocked. I had made the appt six weeks before! A dear friend in Maine had purchased tickets for herself and her husband to be there to help me get around. I felt hopeless, and lost all faith in the medical system. I was angry too. And yes, I asked God, "Why?" Why have me make these appointments only to be let down like this?
I questioned, to myself, why did this happen, why did the surgeon say he saw something in my imaging that made him want to see me, only to, a week before my trip, call and tell me he was cancelling my appt? I could only believe that something happened that had nothing to do with my imaging or what could be done for me...something happened to where he did not want me for a patient.
So, I know many of you are writing to me, wishing me well on my trip, but it happens I'm not going. At this point, I'm without a doctor in terms of a neurosurgeon. And mentally, I'm at the point where I'm going to just live with what I have, if it all continues to decline, I have to accept that this is my lot in life.
Of course, I might change my mind later, I might decide I need to see a surgeon, but in order to carry on, to pick myself up and dust myself off, I need to think that I'm just going to stay home and deal with what I have the best way I can. That there just isn't a "fix" for me. Short of a miracle.
So, good night and I hope I can get back on here soon. I think often of posts I want to make, of beautiful things I get to enjoy out the window. I want to share about Alaska, it is completely "as advertised!"
If I owe you an email, I'm sorry. I think of each of you all the time, truly I do. But answering emails seems continue to be difficult. But I'll try.
love to you
"By His Grace"
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