I woke up at 4:00 am today and, feeling kinda smarmy, I arose, took a pain pill, then laid back down in the guest room, where, suddenly, the pain washed over me in a tsunami of sensation.
I couldn't read anything and I couldn't sleep, so I finally got up and let the dogs go out for their morning ablutions.
I opened the screen-door. Within the passing of only a few seconds, as the killer-dog, Mickey, burst through the opening, I saw such an incredible scene like the flashing of a slide show upon a screen.
Over our fence, in the neighbor's yard, there was a group of about eight deer. I don't know if they were young or old or bucks or does.
But it was their ritual, performed in those haunting moments between the full moon going down and the eastern sky taking on a pale hue, that struck me and is with me still. It was, I imagine, something not usually seen by the eyes of us lowly humans.
About six deer milled around tightly in a circle, and, from the center of the circle, two other deer stood up very straight upon their hind legs. Facing each other, they were boxing -- in play, I presume. Striking out with their front hooves, perfectly balanced and facing off like Frasier and Ali.
Thrilla in Manila!
I'd seen things like this in the woods before and on Animal Planet, but what was different was how the other deer, not involved in the boxing match, were mingling in so close to the ones who were.
Then, seconds later, my murderous, standard-sized Dachshund spotted this scene and charged it for all he was worth without respect to the mystical goings-on. His loud yapping spooked the small herd which suddenly abandoned its play and took off for the woods across the road.
I'll never forget that sight!
Thursday, August 6, 2009
Yukon Bound
A month ago, I put together a vacation for my husband and myself. I know, sounds pretty silly when it's getting so hard for me to walk and do things. But, after years of hearing my husband say that he wanted to see Alaska and he wanted to go to the Klondike, I was inspired to put it all together, while I am still mobile enough to go.
We will leave in early Sept. and fly to Seattle and then to Juneau. From there, we'll ferry to Skagway, where I have rented a log cabin in the woods for five nights. I can't wait!
Our cabin sits right along the Chilkoot Trail, where thousands of poor souls started their treacherous journey to the goldfields of the Yukon. If we feel up to it, we can drive from Skagway up over White Pass, to Whitehorse and then back down to Haines, Alaska, then ferry back to our cabin at Skag.
How we will enjoy investigating the historic buildings of the Gold Rush era in Skagway and Haines and Whitehorse, drinking in the mighty mountain views, watching for whales as we sail 6 hours north of Juneau! I'll be sure to share some photos when we get back.
We will leave in early Sept. and fly to Seattle and then to Juneau. From there, we'll ferry to Skagway, where I have rented a log cabin in the woods for five nights. I can't wait!
Our cabin sits right along the Chilkoot Trail, where thousands of poor souls started their treacherous journey to the goldfields of the Yukon. If we feel up to it, we can drive from Skagway up over White Pass, to Whitehorse and then back down to Haines, Alaska, then ferry back to our cabin at Skag.
How we will enjoy investigating the historic buildings of the Gold Rush era in Skagway and Haines and Whitehorse, drinking in the mighty mountain views, watching for whales as we sail 6 hours north of Juneau! I'll be sure to share some photos when we get back.
hindsight is 20 20
Looking back now, I can see where it's been coming on for quite some time.
But I ignored it, figuring if that was my only problem, I can live with that.
I'm talking about the weakness in my hands and arms.
I knew that it was getting hard to open jar lids or bottle tops...that cutting anything like a block of cheese with a knife was getting difficult. That way of holding the knife lends itself to excerbating the weakness...really shows it up.
Now, my hands are weak all the time. Cutting a slice of cheese off a chunk is nigh impossible. Using a can opener? No can do. I've become much more aware of turning door knobs
Typing.
Holding a newspaper up to read it.
Or a book while lying in bed.
Holding the phone. When I'm done talking to someone, my hands and arms hurt so much.
It's not a stretch of the imagination and it didn't take an old Indian tracker to see this one coming. Because, when I regained consciousness after my injury, I felt the electricity zapping through my arms down into my hands, and down my legs into my feet. I prayed to not be rendered paralyzed and that prayer was answered, thank God.
After my horse wreck, I did have problems with my arms. If I used them, they'd get painfully itchy, and also have lancinating pains sparking here and there throughout them.
That horrendous, central nervous system itch went away for awhile. And it didn't seem like my hands were the main problem and I was able to continue on to some extent.
How I'm wired is that I will "do" and keep on "doing" far past signs of pain or weakness. So, there is no excuse for my weakness to progress, unless it is from the spinal cord. I mean, I am my own physical therapist and I keep as active every day to the extent that I can, and even past it, some.
So, today, the pain and weakness was very evident, and I had to avoid anything where I was using my hands.
Have you ever tried that? Of course, many of you know exactly what I mean. But when you can't type or wash the counters or pull weeds or hold a book or even a water hose, then there isn't much to help the time go by.
It's been a long day.
But...I am so thankful I have this appointment coming up. I'm so happy that someone looked at my imaging and saw something he could help. I can't wait until Sept. 16.
Followers of this blog have been down this road with me before. Same ol' story, different doctor. Different city.
I'm not jaded but I'm wary.
If I were cynical, I'd not arrange the trip.
But having been through what I have so far, it takes its toll in trust and faith in mankind.
Of the medical type.
But I ignored it, figuring if that was my only problem, I can live with that.
I'm talking about the weakness in my hands and arms.
I knew that it was getting hard to open jar lids or bottle tops...that cutting anything like a block of cheese with a knife was getting difficult. That way of holding the knife lends itself to excerbating the weakness...really shows it up.
Now, my hands are weak all the time. Cutting a slice of cheese off a chunk is nigh impossible. Using a can opener? No can do. I've become much more aware of turning door knobs
Typing.
Holding a newspaper up to read it.
Or a book while lying in bed.
Holding the phone. When I'm done talking to someone, my hands and arms hurt so much.
It's not a stretch of the imagination and it didn't take an old Indian tracker to see this one coming. Because, when I regained consciousness after my injury, I felt the electricity zapping through my arms down into my hands, and down my legs into my feet. I prayed to not be rendered paralyzed and that prayer was answered, thank God.
After my horse wreck, I did have problems with my arms. If I used them, they'd get painfully itchy, and also have lancinating pains sparking here and there throughout them.
That horrendous, central nervous system itch went away for awhile. And it didn't seem like my hands were the main problem and I was able to continue on to some extent.
How I'm wired is that I will "do" and keep on "doing" far past signs of pain or weakness. So, there is no excuse for my weakness to progress, unless it is from the spinal cord. I mean, I am my own physical therapist and I keep as active every day to the extent that I can, and even past it, some.
So, today, the pain and weakness was very evident, and I had to avoid anything where I was using my hands.
Have you ever tried that? Of course, many of you know exactly what I mean. But when you can't type or wash the counters or pull weeds or hold a book or even a water hose, then there isn't much to help the time go by.
It's been a long day.
But...I am so thankful I have this appointment coming up. I'm so happy that someone looked at my imaging and saw something he could help. I can't wait until Sept. 16.
Followers of this blog have been down this road with me before. Same ol' story, different doctor. Different city.
I'm not jaded but I'm wary.
If I were cynical, I'd not arrange the trip.
But having been through what I have so far, it takes its toll in trust and faith in mankind.
Of the medical type.
Sunday, August 2, 2009
A new day, a new month, a new plan
This will be short.
I am so weak, my hands are hurting and numb and not going where I want them to. But want to update my friends.
I have an appointment with a new neurosurgeon, Dr. Fraser Henderson in Bethesda, MD
I'm quite excited to see him. I sent my package with the CD of my 2 month old imaging done in NY; a 4 page letter of my background and history; and a 2 pg symptom list. He reviewed it and had his secretary call and ask me to come see him.
I'm going on faith, believing that this man, whom I've heard wonderful things about, would not have me fly from WA state to MD if he did not feel he had something important to tell me and could offer me some help.
This is a new plan, a new direction. After 3 years as a The Chiari Institute patient, I did not want to leave their care. Dr. B is a brilliant neurosurgeon, a lovely man, and I was honored to be his patient for that time. But...but...he does not offer me any hope or help or surgical treatment. His opinions have changed. But my symptoms have not, except that they are increasing and intensifying quickly.
I feel I need stabilization at the skull base. He does not feel I need it. I'm choosing to seek another opinion. I could write pages on why I feel I need it, why I am unstable, etc...but that can be found in the time since this blog began, on every page.
It's been hard for me to post this here because I do not want to throw any disparagement upon TCI or Dr. B. This is my personal situation, my choice. It has nothing to do with anyone else's situation.
So, I'm looking forward, not back. My appointment in MD is Sept. 16.
Again, it's a journey of faith. I don't need to spend the money on another flight and hotel. I don't know where I'll find the strength to make this trip alone. But I know God knows, and I know I can't continue on this way, getting worse each week. The implications of this direction are too foreboding. And I don't feel ready to give in and give up.
Besides, the pain is just too awful. I need some help.
I was launched off that big, speedy jumping horse over five years ago. No one has helped me yet. No stabilization whatsoever. No surgery at the skull base/C1 level. In the beginning, I was given a small, flexible collar and told to take it off in 6 weeks. Later, as a TCI patient, I was prescribed rigid collars and cervical thoracic orthotics (CTO). But these do not keep my skull from settling, and, settled, it has!
God must have a plan for me. I'm just trying to follow this, one step at a time. This really doesn't feel to me like I've gone back to square one. I am not upset with anyone. I just feel God had a change of direction in store for me, and so I'm off and running. Well, metaphorically, that is.
Wish me well, say a few prayers for me. I will let you know what Dr. H says. I know I'll be in good hands, I have a sense of strong trust in this man, though I have not met him before.
Thanks for coming along for the ride!
I am so weak, my hands are hurting and numb and not going where I want them to. But want to update my friends.
I have an appointment with a new neurosurgeon, Dr. Fraser Henderson in Bethesda, MD
I'm quite excited to see him. I sent my package with the CD of my 2 month old imaging done in NY; a 4 page letter of my background and history; and a 2 pg symptom list. He reviewed it and had his secretary call and ask me to come see him.
I'm going on faith, believing that this man, whom I've heard wonderful things about, would not have me fly from WA state to MD if he did not feel he had something important to tell me and could offer me some help.
This is a new plan, a new direction. After 3 years as a The Chiari Institute patient, I did not want to leave their care. Dr. B is a brilliant neurosurgeon, a lovely man, and I was honored to be his patient for that time. But...but...he does not offer me any hope or help or surgical treatment. His opinions have changed. But my symptoms have not, except that they are increasing and intensifying quickly.
I feel I need stabilization at the skull base. He does not feel I need it. I'm choosing to seek another opinion. I could write pages on why I feel I need it, why I am unstable, etc...but that can be found in the time since this blog began, on every page.
It's been hard for me to post this here because I do not want to throw any disparagement upon TCI or Dr. B. This is my personal situation, my choice. It has nothing to do with anyone else's situation.
So, I'm looking forward, not back. My appointment in MD is Sept. 16.
Again, it's a journey of faith. I don't need to spend the money on another flight and hotel. I don't know where I'll find the strength to make this trip alone. But I know God knows, and I know I can't continue on this way, getting worse each week. The implications of this direction are too foreboding. And I don't feel ready to give in and give up.
Besides, the pain is just too awful. I need some help.
I was launched off that big, speedy jumping horse over five years ago. No one has helped me yet. No stabilization whatsoever. No surgery at the skull base/C1 level. In the beginning, I was given a small, flexible collar and told to take it off in 6 weeks. Later, as a TCI patient, I was prescribed rigid collars and cervical thoracic orthotics (CTO). But these do not keep my skull from settling, and, settled, it has!
God must have a plan for me. I'm just trying to follow this, one step at a time. This really doesn't feel to me like I've gone back to square one. I am not upset with anyone. I just feel God had a change of direction in store for me, and so I'm off and running. Well, metaphorically, that is.
Wish me well, say a few prayers for me. I will let you know what Dr. H says. I know I'll be in good hands, I have a sense of strong trust in this man, though I have not met him before.
Thanks for coming along for the ride!
Tuesday, July 21, 2009
Waitin' for the meds to kick in...
So many of the dear ones I know online who suffer with neurological conditions such as Chiari Malformation post on message boards or update their blogs in the wee hours of the morning.
Like me, they are up, in pain, waiting for a pill to be absorbed in the bloodstream and carried somehow to the brain and those pain receptors that need numbing, at least for a little while.
I was up at 1:15 am, two hours after I went to bed. My feet were hot and burning and I could not go back to sleep. I got a drink of water and crept into the guest room bed, debating whether to take a 5 mg of oxycodone or not.
I hate taking them in the middle of the night, since I'm allotted only 5 per day and that is never enough to cover the pain that haunts all my hours. I laid down and read some, but knowing that foot and leg pain wasn't going to do anything but intensify, I opted to go back to the kitchen for the oxy.
Back in bed, I finished a great book I've been reading, titled IceBound. This put me 2.5 hours past the time I took the oxy...and back in pain, especially at the back of my head now.
I just got up and took a 500 mg tab of acetomenophen. I know the news says it ruins your liver or kidneys or something. But that is in extra high doses. One or two tabs a day, I don't believe, will send me down the river. Though there are certainly days I'd like to make the trip!
I turned on the desk lamp which allows my eyes to adjust to the glow of the monitor, deciding to type an update here. Everything hurts, everywhere. Hopefully, I'll feel relief soon and head back in to bed, perhaps getting 2 hours of sleep to add to the 2 hours I had earlier and that should be enough.
The neighbor just left home in his log truck, climbing through the gears as he passes my house. He and I have an intimate relationship and he doesn't even know it. I don't even know his name. But I do know that he leaves every morning except Sundays at 3 am and he returns home at 5 pm.
He also starved one of his dogs to death, but that's a different story.
Yesterday, Monday, I had an appointment with my local doc. I put in a request for a motorized scooter. He told me that they are very hard to get approved, and worse so with work comp.
I said, "What about all those ads on TV that guarantee Medicare will pay for it, or the scooter is free?" and he replied, "That's the problem. It's never like that, and people come in with high expectations."
I feel a scooter would be so helpful in large stores. Later today, for example, we are planning to go to our shopping town in Oregon for a grocery run. And a Kmart run. Kmart has scooters there. The grocery store doesn't. And it's a big store. Almost every time there, I have to quit halfway through and go sit in the seats by the pharmacy and let my husband finish the shopping alone.
I suppose that it will take my work comp three years to decide on a scooter for me, since it takes them 3 months to decide on Lidoderm patches. The wheels of indecision turn slow. Oh Lord, don't let a new, national health care plan be worse than this!
I also shared with my small-town doc that I mailed a package to the specialist in Bethesda containing a CD copy of all the imaging I had done in NY in June; a list of my symptoms which takes two pages and the lines are double-spaced; and a 3 page letter of background. An e-friend told him, one night while she was at his hospital with her daughter about to have surgery, about me and my situation, and he encouraged me to contact him. I have done some research on him and like so very much what I read. He definitely is an expert in the craniocervical junction.
And I am back ready for surgery again. With things worsening, I hate to imagine me in ten years, when I'll be 67. I can't imagine I'd be ambulatory. Better to take the horse and do a little "plow reining" to get the show on the road...if I can.
Especially if there is a surgery often done for elderly patients with rheumatoid arthritis, whose spines and ligaments cannot hold up their heads either.
Our raspberry bushes are prolific this year. I pick a large, stainless-steel mixing bowl of red raspberries and some sort of smaller blackberries every day. I freeze them, sticking the baggies of fresh berries into the chest freezer in the shop. I know that all winter, I'll find pleasure in my bowl of raisin bran each morning, adorned with red morsels born of the hot summer days of July.
Well, my head is just too heavy for me to sit here any longer. Not sure if my feet will feel okay when I get back in bed, or if the back of my head will throb as I strive to find a spot on the pillow that works, but I need to get away from this position and give it a try.
God bless!
Like me, they are up, in pain, waiting for a pill to be absorbed in the bloodstream and carried somehow to the brain and those pain receptors that need numbing, at least for a little while.
I was up at 1:15 am, two hours after I went to bed. My feet were hot and burning and I could not go back to sleep. I got a drink of water and crept into the guest room bed, debating whether to take a 5 mg of oxycodone or not.
I hate taking them in the middle of the night, since I'm allotted only 5 per day and that is never enough to cover the pain that haunts all my hours. I laid down and read some, but knowing that foot and leg pain wasn't going to do anything but intensify, I opted to go back to the kitchen for the oxy.
Back in bed, I finished a great book I've been reading, titled IceBound. This put me 2.5 hours past the time I took the oxy...and back in pain, especially at the back of my head now.
I just got up and took a 500 mg tab of acetomenophen. I know the news says it ruins your liver or kidneys or something. But that is in extra high doses. One or two tabs a day, I don't believe, will send me down the river. Though there are certainly days I'd like to make the trip!
I turned on the desk lamp which allows my eyes to adjust to the glow of the monitor, deciding to type an update here. Everything hurts, everywhere. Hopefully, I'll feel relief soon and head back in to bed, perhaps getting 2 hours of sleep to add to the 2 hours I had earlier and that should be enough.
The neighbor just left home in his log truck, climbing through the gears as he passes my house. He and I have an intimate relationship and he doesn't even know it. I don't even know his name. But I do know that he leaves every morning except Sundays at 3 am and he returns home at 5 pm.
He also starved one of his dogs to death, but that's a different story.
Yesterday, Monday, I had an appointment with my local doc. I put in a request for a motorized scooter. He told me that they are very hard to get approved, and worse so with work comp.
I said, "What about all those ads on TV that guarantee Medicare will pay for it, or the scooter is free?" and he replied, "That's the problem. It's never like that, and people come in with high expectations."
I feel a scooter would be so helpful in large stores. Later today, for example, we are planning to go to our shopping town in Oregon for a grocery run. And a Kmart run. Kmart has scooters there. The grocery store doesn't. And it's a big store. Almost every time there, I have to quit halfway through and go sit in the seats by the pharmacy and let my husband finish the shopping alone.
I suppose that it will take my work comp three years to decide on a scooter for me, since it takes them 3 months to decide on Lidoderm patches. The wheels of indecision turn slow. Oh Lord, don't let a new, national health care plan be worse than this!
I also shared with my small-town doc that I mailed a package to the specialist in Bethesda containing a CD copy of all the imaging I had done in NY in June; a list of my symptoms which takes two pages and the lines are double-spaced; and a 3 page letter of background. An e-friend told him, one night while she was at his hospital with her daughter about to have surgery, about me and my situation, and he encouraged me to contact him. I have done some research on him and like so very much what I read. He definitely is an expert in the craniocervical junction.
And I am back ready for surgery again. With things worsening, I hate to imagine me in ten years, when I'll be 67. I can't imagine I'd be ambulatory. Better to take the horse and do a little "plow reining" to get the show on the road...if I can.
Especially if there is a surgery often done for elderly patients with rheumatoid arthritis, whose spines and ligaments cannot hold up their heads either.
Our raspberry bushes are prolific this year. I pick a large, stainless-steel mixing bowl of red raspberries and some sort of smaller blackberries every day. I freeze them, sticking the baggies of fresh berries into the chest freezer in the shop. I know that all winter, I'll find pleasure in my bowl of raisin bran each morning, adorned with red morsels born of the hot summer days of July.
Well, my head is just too heavy for me to sit here any longer. Not sure if my feet will feel okay when I get back in bed, or if the back of my head will throb as I strive to find a spot on the pillow that works, but I need to get away from this position and give it a try.
God bless!
Wednesday, July 8, 2009
livin' in the city
Yes, we live in the city...at least, within the city limits. For the first time in my life, I "pay" for water. City water, that is. That bothered me a lot at first, paying for water, until I realised that everyone pays for water, even if they have a private well, they have to pay for the electric pump to get it out of the ground.
Well, of course, we have lived several places where our water was indeed free, because we had to throw a bucket down the well and bring it up on the end of a rope.
Our "city" has 3500 people in it, and they seem like good, honest folks. I like towns where there isn't any tourism stuff going on, or, at least, not much. And our town is like that. We don't have a stoplight in the town, nor is there one in our county. The county doesn't have a movie house either.
In fact, we have to drive to the next state to get to our nearest movie theater. But that sounds worse than it is....that theater is across the Columbia River and only 35 miles away. We don't go to the movies that much, anyway.
But, oh the joys of living here in the "city!"
Tonight, my husband waved me frantically to the window to look at the yearling deer in the front yard drinking from our birdbath. It so reminded me of a children's poem I wrote titled, Deer Outside My Window, and the one line states that we have so many deer in our yard, they are "drinking from my birdbath making bubbles with their noses!"
This little fella was having a nice, cool sip of water without hoofing it down the hill to the seasonal creek at the bottom of the canyon across the road. Can't say I blame him. But then, his brother or sister walked up behind him and starting to eat the leaves on a small, transplanted maple tree I've been nurturing, and then, no more thoughts of cuteness! I swung open the door and "shhh'd" at them to get the heck out of my yard.
To my credit, I didn't let the little hound dog out, he would have traumatized them!
A week or so ago, we had a nice Tom Turkey come up close to the living room window to get the crackers and dried bread we leave out there at the edge of the railing for the birds. My husband built six birdhouses this spring and set them out and about the front and back yards. We have received so much entertainment and joy from the bird families that took up residence in those houses.
Bluebirds, gold finches, and nuthatches galore! In fact, we can often look at the birdbath and see about ten little goldfinches out there watering at the same time, and know they hatches from eggs inside the houses we provided this spring. We all feel like one, big family!
Ah, the joys of city livin'!
Well, of course, we have lived several places where our water was indeed free, because we had to throw a bucket down the well and bring it up on the end of a rope.
Our "city" has 3500 people in it, and they seem like good, honest folks. I like towns where there isn't any tourism stuff going on, or, at least, not much. And our town is like that. We don't have a stoplight in the town, nor is there one in our county. The county doesn't have a movie house either.
In fact, we have to drive to the next state to get to our nearest movie theater. But that sounds worse than it is....that theater is across the Columbia River and only 35 miles away. We don't go to the movies that much, anyway.
But, oh the joys of living here in the "city!"
Tonight, my husband waved me frantically to the window to look at the yearling deer in the front yard drinking from our birdbath. It so reminded me of a children's poem I wrote titled, Deer Outside My Window, and the one line states that we have so many deer in our yard, they are "drinking from my birdbath making bubbles with their noses!"
This little fella was having a nice, cool sip of water without hoofing it down the hill to the seasonal creek at the bottom of the canyon across the road. Can't say I blame him. But then, his brother or sister walked up behind him and starting to eat the leaves on a small, transplanted maple tree I've been nurturing, and then, no more thoughts of cuteness! I swung open the door and "shhh'd" at them to get the heck out of my yard.
To my credit, I didn't let the little hound dog out, he would have traumatized them!
A week or so ago, we had a nice Tom Turkey come up close to the living room window to get the crackers and dried bread we leave out there at the edge of the railing for the birds. My husband built six birdhouses this spring and set them out and about the front and back yards. We have received so much entertainment and joy from the bird families that took up residence in those houses.
Bluebirds, gold finches, and nuthatches galore! In fact, we can often look at the birdbath and see about ten little goldfinches out there watering at the same time, and know they hatches from eggs inside the houses we provided this spring. We all feel like one, big family!
Ah, the joys of city livin'!
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