Saturday, December 18, 2010

My Christmas message...a winter story

I remember times like this.

Back in 1979, we were living on a ranch in New Mexico, way up on the Continental Divide.
We were snowed-in that winter. The snowplow stopped 9 miles from our ranch, and our nearest neighbors lived 2 miles beyond that. This meant we had to ride out horseback to our neighbor's house.

We were 25 miles from town, so we couldn't get to the PO to get our mail. Our neighbors would get our mail for us, and every Wednesday, it was pre-planned that we'd ride the 11 miles out and pick up our mail from them.

Some weeks, we could not go because there was a snowstorm on that day. Those weeks were hard, because that meant we had to wait a whole week more to get our mail! ANd our mail was so precious to us! This was before computers and email.

My father, 3000 miles away in NH, would record messages to us on cassette tapes. How we loved getting those tapes! I still have them, and gladly so because today marks the date, 14 years ago, when he died. However, I have never gone back and listened to the tapes I have because it hurt too much to hear his voice. But I still feel glad to have the tapes and save them for my Dad's grandson, Jesse.

Anyway...

when we got to our neighbors' house, the husband, Johnny, an old Polish rancher who'd lived on that ranch every day of his life, helped us put our horses into his barn and we'd loosen the cinches and give them some hay, then we'd trudge across the barnyard to their house.

I'd be carrying the egg cartons containing the eggs I had gleaned from our hens on the ranch. Our neighbors would take these 3 or 4 cartons of eggs to the feed store in Gallup, who would then sell them for us. That was the ONLY amount of money we made during the winter, those few precious dollars from the sale of the eggs I had packed across the back of my saddle's cantle where they'd ridden snug and safe against my lower back, even when my horse had to lunge through snow drifts or had fallen through ice into swiftly running creeks.

In Johnny's house, we'd take off our boots and warm up our toes in their warm kitchen, while Ann, Johnny's wife, warmed up a lunch that often had delicious Polish sausages made from their own ranch beef.

How precious those visits were! We'd hear the news of the outside world and gossip about other neighbors and also hear old stories from Johnny and Ann. They were good folks, and good to us.

Too soon, it was time to bundle back up, take our sack of mail (letters and the Readers Digests that someone had purchased a subscription for us) and put them into our saddle bags, tighten the cinches, snug up our scarves and hug-goodbyes to Johnny and Ann, riding off down the county road until we got to where the snowplow had stopped plowing, then we'd point our horses toward the snowbanks, they'd clamber over and then seek out their own tracks that had been laid down in the snow that morning. Nine miles of hard riding lay between our horses and their warm barn; between us and our cosy cabin; between
our cold fingers on the reins, knitted caps pulled down over ears, and the joy of pouring out the saddlebags onto the big table in the cabin and feasting on news from our families.
This time of year, there'd be Christmas cards, and we'd read over and over the handwritten notes inside. My mother would send news of her family; my sister in Hawaii wrote long letters of her beginning of pregnancy and the dreams that such a blessed event promised (an experience that I would soon learn was also my own!); the Readers Digest held photos of seductive foods displayed for the camera in ways that would lure the reader to purchase Borden's Eagle Brand Condensed Milk and Land O' Lakes butter.

Could the photographers have known that a man and a woman surviving the long winter atop the Continental Divide in NM were drooling over their sumptuous presentations? Were they in New York City or Los Angeles with their cameras and lights while we were packing precious eggs over the miles and through the worst winter that mountainous area had seen in 50 years? I still can see in my recollection's eye the strawberry shortcakes that graced the small pages of the magazine not unlike the Sirens perched on rocks who would send out their song to call in unwary ships to meet their battered end upon the storm-ravaged shore.

While we were eating eating eggs which grew more scarce as the winter continued that year and drinking the milk that I gleaned from the wild Angus range cow, fighting off her hungry calf for just a cup of her precious nectar; while we had only pinto beans, eggs and milk and precious little else We had no flour or condiments, only eggs, milk, butter from a jar of cream --and cream from an Angus cow is little to nothing!-- and pintos. There are only so many ways to cook these ingredients and over the 5 months we were snowed-in, I believe we discovered them all!

We learned again that winter that blessings abound and are easily found in the little nooks and crannies of life.

A card lovingly mailed from far away; a note scribbled in haste before the stamp is licked and applied to the envelope; an extra half-cup of warm milk from the recalcitrant cow who would only allow me to touch her bag while her nose was buried in oats in a pan on the floor; the extra egg from the hens who faced bravely the cold and the tufts of snow that blew in through the cracks in the coop; the lovely, sunny day that allowed us to saddle horses and head out for a long-awaited visit over hot, strong coffee and the laughter that accompanied our visit with old-time ranch folks; yes, even the photo of strawberries and whipped cream and shortcake, that did not fill the belly but did produce the taste within our mouths.

Blessings abound. If all we have is a room, we can look around and know that blessings abound.

It's not hard for me to liken our treks through the drifts toward the shelter of our friends' home at the end of our trail to another trek near Bethlehem so long ago. I, like Mary, was expecting our first child, a son. Our destination was unknown, in that we could have arrived at Johnny's ranch gate only to find them gone to town, in which case, we'd turn our horses around and head back, empty-saddlebagged and disappointed, toward our ranch home.

I can also compare our winter adventures to the lives of us all. We struggle through rough times, find some shelter, shade or warmth once in a while along the trail, but in the end, there is the reward at the end and all troubles are solved, when we accept the offer given by our neighbors (or, as pertains to lifes' struggles, when we accept the hand of the Lord which is extended to every single one of us today). An extended Hand does no good if we do not do our part and accept it. If we'd not accepted the neighborliness of Johnny and Ann, we would have stayed, along with our horses, out in the cold snow, no warm meal and none of the last week's mail!

Merry Christmas to all.

My prayer is that all who read this will accept the extended Hand of Jesus who offers to
give to us the best gift of all: eternal forgiveness and everlasting Love! He has the best shelter of all from the
storm of Life's travails.

With love,

Tuesday, December 14, 2010

Who's smarter?


I have a small dog...well, he was supposed to be a small dog, but he's actually more of a medium-sized dog. Or, maybe he's a small dog with a big-dog personality...or perhaps he's a misfit entirely!


Anyway, Mickey is a 3 year old, standard-sized Dachshund. He's as handsome as he can be. He has so much life in that buff body of his, he can be hard to take sometimes. When he wants your attention, you listen! He's the main attaction in any room he's in! (thank you, he'll be here all week!).


I've told his story here before, how Mickey was left tied up in an orchard by some "pickers" when they had to move on. He has a scar all the way around his neck, an intermittent line of white hair against a black coat, to show how long he pulled at the rope he was tied to before some kind person saved him and he ended up in a foster home. My husband and I adopted him because we wanted a Dachshund. Not sure why. Now, I want an older, calm Australian Shepherd. But, that's another story...


I tried to give this dog away AND give him back to his foster home several times in the year after he came to live with us. He must have been meant to live with us. And I knew that IF Mickey were to live with us, I needed to learn how to teach some manners to a rambunctious dog.


And I did! I watched The Dog Whisperer on the Nat-Geo channel and applied Cesar Milan's techniques to my work with Mickey. And I am amazed at how much I can communicate with this energetic dog because of these tools Cesar teaches.


Okay...that's the background.


Over the last two years, I have diligently worked to teach Mickey to sit and WAIT when I open the door to let him and his friend, Quincy, out. Quincy is a dog we got from the rescue place in California six years ago, and despite the fact he'll bite you if you go to pick him up (and by "you" I mean "me!"), he's pretty nigh perfect.


When I say WAIT to Mickey, he is supposed to back off, sit down, and wait until the old Quincy goes first sedately out the door. And this he does, quite admirably. He doesn't do it automatically, but he'll do it all if I say WAIT.
I suspect it's all a game for him anyway.

Now, when my husband goes out the door and doesn't want Mickey to go out with him, I hear all kinds of fussing and fuming and Pete yelling out: "STAY!" "STAY!" "STAY" "I TOLD YOU TO STAY!"


I told Pete, "Don't say STAY! Say WAIT!


You see, it all makes perfect sense in my head. I didn't train Mickey to sit and back off from the door by saying STAY because STAY implies I am asking him to sit and stay there a certain period of time. Mickey is very smart, and I don't want to confuse him.


If I say WAIT, it means he is to wait a moment or two. Then he can go ahead and roar out the door. If I tell him to STAY, I use that at different times, when I actually want him to stay or stay back. Mickey's smart and he knows the difference.


I've told Pete over and over not to yell STAY at Mickey when he is going out the door, but to say, firmly, WAIT. I tell Pete over and over how the dog is trained. It does no good. Pete keeps yelling STAY at Mickey.


Finally, it hit me, yesterday. Since there is no "The Husband Whisperer" on Nat-Geo or any other channel, I just do not have the skills to teach Pete the difference in Stay and Wait.


So, I need to change how I train Mickey. I need to teach him that STAY means WAIT when he is wanting to go outside, but STAY also means STAY when I use it at other times and want him to sit and stay a longer period.


It's confusing, but I think Mickey is smart enough to get it.

At least until Nat-Geo comes out with a new show...

Nausea, a gift from the brainstem...and thoughts on Medicare

I wrote down a note to mention nausea that comes from the brain here. I have this almost every day or evening (usually it comes at bedtime, but can sometimes come earlier). And last night, it came to my attention that this nausea feels different from nausea that is a result of an upset stomach.

There is no upset stomach. There is no reason to take a TUMS or whatever because the stomach is simply not involved.

Due to brainstem compression, this type of nausea attacks many of my online friends who have Chiari Malformation. It's all in the brain. Do you know what I mean? Do you have this as well?

Now, there are times I do feel like throwing up and if I could throw up, I think I'd feel better.
But, I never "can" throw up (sorry). But the nausea comes with that type of thought.

Ginger in a glass with some sugar helps a lot. Or a few sips of ginger ale. I kind of like the glass of ice water, with cubes and a tablespoon of ginger in it, along with some Equal or sugar, it's not too bad.

And lying down and keeping really still.

This type of "brain" nausea is common with people who suffer from dizziness or movement disorders. Chiari is a condition of the cerebellum. In my case, the "chiari" (small "c") is a result of my injury. I've been shown by the neurologist at TCI in New York that the herniation of the cerebellum is pressing against the posterior of my brainstem. And the cerebellum, "they" believe, controls movements. Somehow it all comes full circle and the nausea results. I don't feel like I easily get dizzy, however ever since my injury six years ago (my, how time flies), I must be careful to move my head slowly in grocery stores and not allow my gaze to go back and forth looking for things on crowded shelves...that's a sure producer of nausea and dizziness. I know others who have Chiari Malformation experience this same thing.

Right now, I'm trying to figure out my health insurance. I did have a Medicare Advantage Plan (I have Medicare because I am disabled) and was happy enough with that. But this year, due to the new Health Care Law, a Medicare Advantage Plan is no longer available to us.

I spent some time this morning on the phone with a woman from Medicare as she tried to explain some of this to me, and she stated, "The problem is, a lot of doctors are now no longer taking Medicare. There are no health insurance companies offering Medicare Advantage plans in the NW, in Oregon and WA, any more. And that is true of several states."

This is such a sad state of affairs. The people who needed the help, the disabled and the seniors, who were willing and able to pay a reasonable premium, now do not even have that option. Now, our fees will be greatly increased as our only options become a combination of Medicare Part D (drug plan) and a MediGap/supplemental insurance plan. My own costs will go UP from $120 to $229 a month.

And, I might add, right when my Social Security benefit took a nose-dive with a $400 a month decrease.

We're okay...we can keep plugging along. But I truly feel badly for those people who are living more on the edge than we are. I expect their only options will be to go with just Medicare Part A and suffer the high costs of clinic visits and diagnostic testing, IF they can find a doctor who will take only Medicare.

Medicare has a website, www. medicare.gov, and we are told encouragingly to go to that site where they have an interactive program that will give you the names of doctors in your area if you provide your zip code. I did this. I selected to be shown the name of doctors taking Medicare only...and Medicare plus a MediGap plan.

Guess what? No matter what I put into the box, the results came up...

ZERO!

Zero doctors in my area, or within 25 miles of my area, who will accept new patients who are covered by Medicare along, or a MediGap plan. I have a family practice doctor now, but what about when he retires or if he moves? What about people moving into this community?

Only an echo serves as reply.

Thursday, November 25, 2010

Thursday, November 18, 2010

An incredible day outside. We've had a lot of rain, some snow, mucho clouds and occasional wind. But today.... ah!! Cool, but very sunny and azure skies.

I know it's cool because when I've opened the door to let the dogs out, the unexpected chill has hit my face. I look at the outside thermometer and it reads 40 degrees at the warmest part of the day. But...the blue skies and golden sun is definitely alluring.

However, I couldn't go out today. Too weak. And too much pain in spite of the oxycodone I keep popping.

I guess I raised too much heck yesterday and today, have to pay the price. I dared to ride my little Wrangler scooter over 100 ft. of bumpy yard to reach the smooth, paved driveway of my next door neighbor, Esther. And I dared to sit there for 3.5 hours with my neck brace off, talking wildly and with great abandon (insert a bit of sarcasm here) with my 87 year old, dear friend.

I normally would not stay so long, I know an hour is my limit, but I agreed to do a story on Esther. I recently succumbed to a request that has been repeated often over the last five years, and finally, I agreed to do it. Not because I was made to feel guilty or bound by some duty to do it. But because writing it would be a wonderful way to bless the requester (the editor of the magazine) AND the subject of the tale.

I haven't written a story for publication for several years, probably those same five years that I mentioned before.

What a time we had, Esther and I! Our visit and my purpose allowed me to gracefully ask nosy questions in order to fill in all the gaps of this dear lady's life. At least, the gaps in MY knowledge of her life. Esther is simply incredible, a survivor and Western pioneer who deserves an entire book devoted to her story.

I know that talking for very long is going to cause my skull base to hurt. But sometimes, it's hard not to talk when the reward is a beguiling tale of livestock, long winters, trailing herds and even going out with the "wagon." (ie the chuckwagon used in trail drives way back when)

I know that riding the Wrangler over even the most gentle of dirt trail is going to also aggravate the skull base area, particularly behind my left ear. And not only is the pain amped up, but the aggravation of spinal cord and nerves makes me incredibly weak. I went back to bed after getting up for an hour this morning and slept til 11:30 am. Then I crawled out of bed and have not gone back to bed for the rest of the day. At least, not yet.

I know when I can't go out and enjoy the fallen leaves, the crisp, Fall air, the birds on wing, the sounds of neighbors' dogs barking, the whisper of a breeze in the Ponderosa treetops. My body restricts me as strongly and firmly as a barred door.

It must sound like the proverbial broken record when I write that I need to pursue surgery. The loyal reader must think: "What is stopping you? Why haven't you done that yet?"

But, setting up an appointment is just more cognitive work that comes so hard for me. I've finished the letter to the surgeon. It is basically a cut-and-dried listing of the injury and doctors I've seen and diagnoses I've been given. A cold timeline. So much "flesh and blood" is missing from the sterile words. However, this surgeon seems to be a caring sort. He writes of his devotion to his patients and his commitment to help them and to spend all the time necessary with them. A rare breed to me! I had one neurosurgeon like that...once. But he gave up on me and that is a whole, "in the past" story. A whole 'nother story.

I need to copy the CDs I have of the imaging I had done in 2009. And just that process looms large for my brain. You all know how that is, how you put things off that seem too big to complete sometimes. And after copying the CDs, I need to check them to be sure they copied correctly. I've finished the cover letter to the surgeon, so for that, I am grateful. I want to write a list of my symptoms, and a list of things I've been told I have. Like arachnoiditis and osteopenia and tethered cord and such.

Now that I've written here, perhaps I'll make a stab at copying a CD. Or at least, FINDING them and then laying them out on the desk above the computer. Or...maybe not.

Did I finish the interview with Esther yesterday? No, I did not. This is to be a small article and definitely does not warrant a full-day interview, but when dealing with a precious friend who is 87, I find it a pleasant experience to watch her reach back into the recesses of her memory and drag out recollections long unaccessed. I smiled as she lifted wrinkled, bony, hard-working fingers to count back years as I asked her questions. I marveled silently about her ability to bring forth hazy images of relatives, fleshing them out with phrases she'd possessed for 80 years.

Things like that deserve respect and take time. It takes the time it takes, like working with a wild colt or grafting an orphan calf onto a new mama cow. You don't rush in a situation like that.

You listen.

So, I'll go back on Saturday and most likely spend another 3 or 4 hours in remembered reverie.

Even if it does cause me to stay abed a day or two.

Some things are worth the price.

Tuesday, November 9, 2010

First snow, 2010!


From the window in my office today. The picture doesn't show the snow coming down. They were great big fat fluffy flakes coming straight down and added up to about 3"...but it will all melt tomorrow when the sun is expected to come back out.

Tuesday, November 2, 2010

A cozy picture


Here's a cute picture of our little dog, Quincy. He's been with us six years, and is about 9 years old. He's a very good natured, calm little dog (unlike our other dog who is a torpedo with hide!).








A potential candidate...

A few weeks ago, a young man contacted me through this blog. He had suffered a 4 place Jefferson Fracture last summer, and he lives in the same state I do.

He suggested his neurosurgeon, the one whose care for this man started when he was brought into ER. The young man was put into a halo brace for several weeks, and thankfully, right now, several of his fracture sites have healed (are "union," as they say).

I'm so happy for him, that this fine doctor knew enough to place him into a halo right away and due to that wise decision, his fracture/C1 seems to be healing well.

I looked up this neurosurgeon (it would take me 5 or 6 hours to get to this hospital) and I really like his bio material. If I decide to go see him, I will post here more information about him.

This neurosurgeon wrote that his special interest is in how bisphosphonates affect union of bone after surgery. I might be a candidate he'd take interest in since I've had several years of oral bisphosphonates (Actonel); 18 months of IV infusion of pamidronate; six months of daily injections of Forteo, another bisphosphonate, all prescribed due to my osteopenia and in preparation for the craniocervical fusion I never had (back in NY in 2009).

I need to get my material together, my imaging and radiologists' reports and also a list of symptoms, after I first call his office to see if he would look through my material before making an appointment for me. I just am having a hard time getting this done. For a few weeks now, I've been especially weak and in pain. I do keep up the house with keeping things straight, doing dishes, making beds, doing laundry, sweeping, light vacuuming, dusting. That seems most days all I have strength for.

Most days, I am in bed for two hours in the afternoon, due to my head feeling heavy and me feeling unable to hold it up. Faithful, longtime readers of this blog are familiar with this same ol' song and dance. Sorry.

my new wheels!


Hi dear readers!

Here is a picture of my new scooter, or The Blue Mule, as I affectionately call it.
We took it, and my husband's little off-road "Hawg Ty" to a spot by a lake up in the mountains, and then we drove around the lake a bit and exploring campsites and such.

The second I took off after taking this picture, I was on a lovely, pine-needle-strewn backroad. It was a place I'd have loved to ride along on my horse. And I was in so much bliss to be out and about again!

In the picture, you can see my Aspen (rigid) neck brace on the seat. I definitely have to wear that while driving the Mule. And even at that, it doesn't seem to give my unstable neck much support. I have to go slow, and not be "out" too long. But it was fun while it lasted!

In the back of our pickup you can see the wonderful hoist that I also got to load the scooter. That is so much neater than I had imagined! Just which way it needs to go, up and down and left or right, into the bed of the truck or out, it's all in the computer for the hoist and it literally takes only a minute to unload the scooter.

I think I've mentioned before, but there is one thing: getting a scooter. And there's another thing: feeling well enough, strong enough to go out in it. I see so many people out with their own scooters, and I have to wonder about their level of disability or energy or something. I just don't feel UP to doing much with the scooter.

We have gone to two car shows since I got it, and both times, I took the Blue Mule and it worked really well and allowed me to have a nice time. My husband likes it better, too, because he says I'm not complaining all the time about how much my feet and legs hurt. ;-)

Earlier in the Fall, I used it a little bit in the yard, when I felt up to digging up some irises that were no longer performing, splitting up the tubers and then replanting them elsewhere. The Mule worked good for that. I haven't felt well enough, however, to do anything outside in several weeks now.

This scooter is built by Pride Mobility and is a Wrangler, in case you are curious.

Monday, October 4, 2010

Alaska: The Great Bear's Cub


This is a picture I took last May when we took a trip up to the MatSu valley in Alaska. This is an old mine (The Independence Mine) on a back road near Wasilla)
I recently picked up an old book in town, called Alaska: The Great Bear's Cub, by Mary Lee Davis. I didn't know what to expect, but I love Alaska, and knew I'd enjoy reading more about this majestic state, and knew I'd like to have the old book, dated 1930, in my collection.


I have read a couple of chapters so far, difficult to do since the pages are loose and easily fall out. But what a wonderful read! Here's a couple of quotes I like:


It's young hearts for adventure, and the hard work that always waits on true adventure but which is afterward forgotten. Of course, I was rather young myself when I first went to Alaska. Yet even now I can say truly (and this is in the nature of a confession!) I've seldom seen a real grown-up, even in my own mirror...


...Only those who have far-sighted eyes, only those with forward-looking faces, only those whose feet itch for the touch of trails unblazed and soil unbroken, will glory in The North...


...If you know bears, then you will understand the mettle of Alaska. Alaska is an unlicked bear cub, young and half-grown and wild yet, though in first cubhood the Russians put an iron ring in his nose and made him dance to a rough music.


At the end of one chapter, Davis quotes a verse from Robert Service's "Spell of the Yukon:"


Walk lightly,

Hands upon your eyes;

For he who looks on wild earth once

Looks until he dies.


Another book I recommend for readers who are hungry for words of the West in a novel that is hard to put down is called "The Last Cowgirl" by Jana Richman. This one reeks of the West, the good and pleasant odors and the stenches that we like to deny exist. The title doesn't do justice to the book, for I was afraid it would be a book about a drugstore cowgirl in short skirts, short boots, tops that have been worked over with a BeDazzler and make-up that wouldn't last past the first drop of sweat that inevitably cascades down from the brow beneath that Ralph Lauren hat.


Happily, I was wrong. The writing in this book touches the soul someplace deep and sometimes dark. I know if you like good, well-crafted writing, you will like this book. Look it up on Amazon and check out the used book prices. It'll be worth it. One caveat: there are a few obscene words in the book, not enough to detract from the story, but if that sort of thing bothers you, don't pick this one up.


Thursday, September 30, 2010

a picture I like...


Here's a picture of me that I like.


And like many people, finding a picture of myself that I like is danged hard.


This one was taken by my husband where we last went camping. We were out in a field walking the dogs, in the rain, and I was wearing his bulky but comfy and secure flannel shirt. For me, I see myself out in the woods, in the mountains, a high mountain meadow, with my animals, and I feel like "me." It's been a long time since I've felt that way.

Monday, September 27, 2010

Life is just too hard...

I hate to complain here, but truthfully, life is becoming too difficult for me. Just little things are a burden to do...returning emails, calling my mother, grinding the dogs' toenails, watering the tomatoes outside...mailing a letter or card.

Anything extra seems so onerous and I think it's because just keeping up with the daily duties of household life take up all the energy and time that I have. I'm getting to where I often have to empty the dishwasher (and fill it) in parts and pieces...empty the top drawer and then close it all up and come back later and do the bottom drawer.

Typing has become harder, my fingers and my brain are not talking to each other as well as they could. And typing things you don't mean, and going back to correct them, just a little thing like that tires me out no end.

I've been doing some reading of medical articles on my C1 fracture etc, and seeing how weakness is a big part of the broad spectrum of symptoms that accompany spinal cord injury/brainstem injury. I am sure I've read that before, but I read it like its new, and I think, "All those years of trying to get doctors to understand that my weakness is not because I am out of shape; it's not because I need to get back to exercising and build up strength. I used to try so hard to convey to them the type of person I am and that I will "do" just as far (and even further) as my body will allow me to do, each and every day."

Maybe those doctors knew all along that profound weakness is part of SCI, but they would not tell me, and they'd let me try to plead my case that I'm not malingering, I'm not lazy, I'm not so much out of shape as I am profoundly weak.

I know I need to have the surgery. But I am at such a loss to make it all happen. I thought there was a skull base specialist in Seattle, but I looked more closely at his bio online, and he is a plastic surgeon. I did not trust the doctor who offered me surgery in Portland and I can't put my finger on why. It's so hard when you have something rare and you don't know where to turn. But I'm getting worse and worse.

I've learned that you can have a shiny, new mobility scooter and want badly to ride/use it, but you have to feel well enough to do that first. Whatever is hammering away at my brain and body usurps my strength and pours on the pain, like coal being shoveled to a steam engine.
Pour it on! Chug, chug, chug. This painful weakness rules every single day of my life, and the only thing that keeps me going is knowing that from time to time, I will have a few minutes where I'll feel good enough to empty half of the dishwasher...or call my mom.

Tuesday, September 21, 2010

Flowers from my August flower garden







Our campsite at Lower Creek Falls

My husband and our restored vintage trailer on its first outing!

The photo below is of Lower Falls on the Lewis River in WA state. The picture doesn't have much reference for size, but the falls are about 50 ft. high.



Fall is here!

Tomorrow night, Autumn arrives! What a wonderful year it has been. The weather has been just the way we like it, mostly cool-ish!

Since I last wrote, we took our trailer on another little camping trip and had another great time. It rained all of the first day as we enjoyed a great campsite in the empty "Mt. Adams Horse Camp." We were all alone there. What a great setup this is for horseback riders. High-lines to tie your horses safely, without damage to trees, are set up at each of the campsites. What a great place that I would have enjoyed with my horses "back in the day."

We are planning to go back there in a couple of days. This time, we hope for blue sky and fair weather so that we can see the mountain looming over the campground, a view that was hidden by low-lying clouds when we were there 3 weeks ago.

This time, we'll take our "recreational vehicles." I finally have my scooter, which I call my "buggy." It is a Wrangler, by Pride Mobility. And it is perfect for country livin'. I have not tried it out much because I just have not felt very good. Lots of the usual pain and incredible weakness, just doesn't allow me to feel foxy enough to go out and play.

My husband bought last weekend a "Hawg Ty." Now, I don't expect my readers to know what that is, as we surely didn't know. But it's a squatty, fat-tired tundra motorcycle. It's light enough to go on the rack on the back of the trailer (my buggy fills up the entire truck bed. I forgot to mention that I also got, thanks to work comp, a hoist that is all programmed exactly to move the right way and amount of forward and back and side to side to gracefully and quickly put my big buggy into the pickup bed, or take it out). The Hawg Ty has a small stationery gas engine, something like a little Honda power plant, it is 5.5 hp. It has a pull rope start, like a lawn mower.

My husband has felt like a big kid with this new bike. He used to race bikes, including flat tracking, and also has been a motorcycle lover all of his life. He also has a "V-Max" motorcycle that is a fast hunk of iron! The Hawg Ty is so cute and my husband drives it around and around our house, looking like he has a little track already, and he always is wearing a big, ol' smile.

So, we'll take the Hawg Ty and the buggy, which has all-terrain tires, to the campground and maybe we can drive around the dirt roads that flank the open meadow there a bit. My scooter is electric/battery and so whisper quiet.

On last Saturday, we took it into town to see the car show, and it was so easy to unload and then drive a bit. Due to having the scooter, I didn't have to walk the 4 blocks to see the antique cars, so that is really a God-send!

Oh, other news is that I'm losing weight. Such a blessing!

I hate to admit it, but the last time I was weighed at the cancer center, I weighed 192.6. I've been inching my way up gradually over the last few years and attributing it all to not being able to exercise. I felt like I really couldn't lose weight, and that I was just doomed to being "obese" (as the doctors so rudely put in their reports!).

I've never really been overweight in my life because of my career in training horses. But I had accepted my weight and the fact that I kept having a harder and harder time finding clothes in my closet that would fit!

Suddenly, one day, I felt inspired to go on a diet. It was like I was given the diet to do, from God. And the will to do it. Because I know first hand that my will power is not worth a hill of beans! But God gave me the direction and the staying power, and I knew it. As I stuck to the "plan" for one, then two, then three whole days, each day I thanked God for it, and asked Him to keep me going.

So, what the "plan" is is simple. I write down everything I eat and the calories that food item runs. And I keep to 1000 (or a little more or less, but never over 1200) calories a day.

I had read somewhere that it takes 2500 cal. for someone to simply maintain their weight. So, I figured that even without exercise, I should be able to lose some. I'd be happy with any weight loss.

And my goal is to lose a significant amount by Oct. 1 when I next go to the cancer ctr for my pain mgmt. appointment, where they always weigh me.

Well, I didn't weigh myself until I had been on the "plan" for two weeks. I didn't want to be discouraged if I wasn't losing. When I did weigh myself, I was shocked to see that I was down ten pounds in just two weeks! I was at 182! I had already met my goal, because in my mind, a significant weight loss would have been ten pounds. What a blessing!

So, I weighed myself the other day in the thrift shop where there was a nice set of scales for sale. And I was shocked to see I was down to 170 already! I'd lost 22 lbs in three and a half weeks, without being able to exercise!! Thank You Jesus!!

What fun it has been to be able to wear my clothes and they are loose and comfortable. And shirts that I wasn't wearing because they were too snug now fit easily. This has been such a big thing, a big blessing in my life, as I'm sure it is to anyone who loses weight.

My goal is to get down to my "riding weight"... the weight I was when I got hurt back on April 9, 2004. I was 148 lbs then, and that was a good weight for me. I never thought I was thin back then, but when I looked at old pics of me then, I WAS thin and didn't know it.

So, I have 22 more lbs to go and I know, with the help of Jesus, I can do it.

I have not been feeling well, as I said. Lots of neuropathic pain, and pain in my head and upper neck, shoulders and upper arms, legs and feet. Same ol', same ol'.

But I can tell that it is easier for my body to carry me around with less weight to deal with. I can now step up onto the cottage-stone wall/flower bed in our back yard, and when I do it, I can literally feel I am lighter to get up there. Nice to have this reward of a job well done when there is so little I can do.

Each day that I can, I have been digging up irises that were planted by the previous owner of this place up on a hill behind our house. Which would be nice, but it's too hard for me to keep that area watered or to go up there to tend any landscaping. So, it's my plan to work when I can, and only for as long as I can, and move any plantings up there down to the flower bed in the back yard or ones in the front yard close to the house. I feel this makes a lot of sense: it's so much easier for me to tend these plants, and they are more visible and more likely to be enjoyed when they will be closer to the house. It's very rewarding, but I just work 30 minutes at it, and the sweat pours off my forehead and my arms become amazingly weak and I get to feeling like I have a wicked flu, all over my body. I should be used to it, it's been six years...

One of my readers, Lisa, lost her good horse Fancy the other day to colic. Lisa, I'm so sorry about your loss. I wish I could have come down and watched you ride her. I know your heart aches with emptiness and I pray God will get you through, as I know He will.

I will post a few pictures here now. And hope to have some nice pictures in a few days when we get back from camping with our "Casbah" (the model of our 1969 Alladin trailer).

Thanks, dear readers! And thanks to all who have posted comments here...your comments keep me going!

Wednesday, August 25, 2010

Mt. St. Helens, the south face





A couple of weeks ago, we took our restored camp trailer for its maiden cruise, camping for 3 nights up in the mountains not far from our home. We took a little day-drive up to the south face of Mt. St. Helens and it was magnificent. This lower photos shows a 30 year old forest, since it was 30 years ago that the volcano erupted. All of the forestation was blown down and covered in rocks and mud where you now see pine and fir trees growing.
The middle and top pictures show a "lahar," the river of mud, rocks and trees that happens when volcanoes erupt.
Not many people visit the south side of the mountain, which has a primitive road to access the area. Even on a nice, August weekend, we were virtually alone up there.

Wednesday, July 28, 2010

Berry Pickin' time in the foothills

We are blessed to have a prolific raspberry patch about ten feet from our back door. Mixed in with the raspberries are quite a few "thornless" blackberries. I had thought these to be the same wild blackberries that are a noxious (though edible and delightful) weed in this area, but a friend who was visiting a week or so ago pointed out that mine do not have thorns, and therefore are not identical to their wild and reckless cousins which reach out to scratch across arms and wrists and knuckles with great abandon.

In the front yard, I have a line of "black raspberries" which resemble little thimbles to me when they twist easily from their core and are best when eaten in a bowl of cold milk and cereal. I like these tiny, tasty treasures better than the red raspberries (for cereal) and I think it is the sweet flavor of the cereal juxtaposed against the tartness of the little, black berries.

The berry patch in back gives forth its fruit by big bowl-fulls every night. The little black raspberries produce only half a cereal bowl-full every few nights.

I used to pick blueberries with my Dad, so berry pickin' always brings back fond memories of our time together in the rural backroads of New Hampshire. I'm sure that, as a gangly, skinny kid and as a busy teenager, I took my time with Dad for granted and did not deeply appreciate those special moments where a lot more than berry-pickin' was taking place.

Stories were being told, tales of Dad growin' up out on a farm. Ghost stories and funny experiences were interrupted by the appreciative "mmmmm's" and "that was a good one!" that burst from our blue mouths and blue teeth.

We had a tall blueberry bush out in the back field, that stood at least 8 ft. tall. It was thick from a multitude of stalks that grew up from the roots and one had to carefully reach way over the top branches to snag the perfect, delectable morsel of nature's fruit. We always had old lard cans which featured a bail, or swinging handle, over the top, and no one who has spent any time at all pickin' blueberries can forget the "ding" you'd hear when you first started dropping the berries into the can. Raspberries are much too soft to make a sound, and you treat raspberries differently than blueberries, anyway. They are tender and fragile and must be lifted using the lightest of touches from the bush to the bowl or can and placed, almost with reverence and love, into the group of delicious, juicy bits that have already made the sacrificial journey from bush to bowl.

I remember the stories and the telling, but not the exact day the stories were told. I just grew up with them, and probably heard the same one over and over. Maybe my Dad was like Jim, our old horseshoer years ago, who loved to tell jokes he'd garnered while traveling all over the county shoeing horses. Once, I remember he launched into a humorous tale, and I told him with a smile, "Jim, you told me that one already!"

And Jim replied, "That's okay. It's a good story and I want to hear it again too!"

I thought blueberries and Dads would last forever. My Dad made his trip to the other side in 1996, but just a few months before he died, he made an offhand comment that I never forgot.

He said, "There's not a day goes by that I don't think about my father."

He was 80 years old when he made that observation, and his father had died of a cerebral hemorrhage while he was out in the NH woods cutting firewood at least 40 years earlier.

It's been 14 years since I've seen Dad, and I know exactly what he meant. I'm guessing anyone reading this who has lost a dear Dad or Mom knows what he meant, too.

Sunday, July 18, 2010

Something to shout about!


Well, I'm just plumb excited!


With the autonomic dysreflexia, I can't let myself jump up and down and say YIPPEE, but that's what I feel like doing, so you can just imagine it.


My work comp has authorized me to get a power mobility scooter. The ones I've seen have been less of what I'd think I'd want or need, but I figured those were my options. But the wonderful fellow who runs the scooter store showed me a link to one called a "Wrangler."


Now, with a lifetime of wranglin' horses and cows and dudes, doesn't that sound like a rig that is meant for me to ride? You can see the photo I'm posting of it, above.


It's got 13" pneumatic tires and high clearance and rugged terrain tread.

It's got a high seat back with a head rest, which I simply have to have.

It'll go 10 mph, tho I doubt I'd do that. I used to be a risk-taker, but no more!

The batteries have a range of up to 20 miles!!


I can just see me tooling along somewhere in the beautiful woods, down an old logging road,

leading my dog alongside. I am starting to cry just thinking of the chance to be out in the woods again, on a quiet electric scooter!
tee hee! I even asked for "Viper Blue!" I guess I'll have to get a helmet for riding it...
yahoo!

Saturday, July 17, 2010

And a few more!







One can never get enough American flags and rodeo queens, can they?

Our local parade
















We live in a small town.

3500 people. Not a stop light in the whole county. Not a movie theater, either. We have to go to the next state to watch a movie. Really! Of course, we live just ten miles from the Oregon line, which is a huge river known as the Columbia.

Last weekend was Community Days here, and here are a few photos from the parade!

All the news that's fit to print

Early this week, the fellow came to have me try out a mobility scooter. When he arrived in a his Subaru wagon, I was surprised to see him heft out of the passenger seat up front the pieces of a small wheelchair! Chris is paraplegic and so cute he'd make a fine actor! He told me he is 39 and I told him, I was guessing you were 23! He said his wife just had twin boys 10 months ago, and he spoke during his time at our house of things he does outside of work, like boating and skiing.

I figured out that he is a motor-head, so I told my husband to show Chris his V-max motorcycle in the shop. We had a nice visit in the shade of the shop, next to the motorcycle and our "new" car and all of Pete's tools and such. Chris said he got his spinal cord injury when he was 14 and was in a car wreck. He understood so much of the things I was talking about, that usually folks don't "get." He asked me if I could do hippotherapy and I told him that I think being near the horses would be too hard for me emotionally. He said he understood that because he can't play wheelchair softball even though he was passionate about baseball when he was growing up...for the same reason.

I was fine with the scooter he brought, but asked for one with suspension, an obvious need for anyone with an upper-C-spine injury or broken neck. I'm thinking this will be something I could go down trails a-ways on....that once more I'll be able to see "what's around the corner."

I was always a "what's around the bend?" kinda gal....a drive that kept me out way too long on rides and causing me to come home late, thus resulting in worry for my family. What's around that corner? What does it LOOK like? what am I missing? Maybe this trail will end soon and I can feel like I saw all that I could this day?

So, I'm thinking perhaps I can use the scooter for a small bit of "bein' out in the woods" again, and also perhaps I can walk my dogs that way, though it would be a hassle to haul the thing down into town. Where we live, it's all pretty rough and hilly and on the road, there are no shoulders to walk down.

I had my six-month appointment with Dr. Fu, my oncologist. Something spoke to me that day, warning me that my tests were not going to come back "fine" this time. And so, I wasn't shocked when Dr. Fu said that my M-proteins had spiked. They've never spiked before, so in 6 months, they went from an undetectable level to 19.5 mg/24 hour urine. I don't know what that means. Dr. Fu said "You are still a long way from a myeloma diagnosis." But all multiple myeloma starts with MGUS (which is what I have, an anacronym for Monoclonal Gammopathy of Undetermined Significance." But not all MGUS ends with Multiple Myeloma. Most MGUS increases at a rate of 1% per year, though the ones that evolve into myeloma increase at a rate of 20% per year. How my stats, of increasing from nothing to 19.5 mg, fall into that ratio, I don't know. I'm not really worried about it. It is what it is, and if there is nothing else that my journey with my injury has taught me, it is that there is no use in worrying.

I am scheduled for another 24-urine and blood labs in six months to see if the spike leveled off or is continuing to climb.

My pain mgmt team at the cancer center is awesome! I am now taking an oxycontin (long-lasting oxycodone) in the AM and PM along with 4-5 oxycodone during the day for breakthrough pain. I'm taking nortriptyline at night, which helps with the pain in a tremendous way, and also helps me sleep.

I've had a lot of company, which I've really enjoyed this year. Tomorrow, a dear friend is coming to see me from her home in Oregon. I have not seen her in almost 4 years! She and I played together in a little bluegrass band in California when I lived there. The injury has taken away my ability to play music, but my friend still packs her guitars around in her trunk as she drives, ready in nan0-seconds for a jam session.

Did I tell you already that we have a fun project this summer? We bought, a couple of months ago, a 1969 camp trailer. What a project!! It's 41 years old and looks like it feels every one of those years! Well, I should say, "looked" because we've been working on it almost daily. Too much to describe, but it's been such a labor of love, and as I work, I think of us living in this trailer next year when we drive up to Alaska with the dogs, hopefully staying a couple of months this time.

It's an Aladdin "Casbah" (model) that is 16 ft. long, and has a full bath and shower in the back. I love everything about it! We bought it from the coastal part of Oregon and now, that was just plain stupid! Dry rot? Yes! Rusted everything, including every single staple in the lovely birch paneling? YES! I have taken off all the cabinet doors and Pete buffed up the hinges to get the rust off of them, and I have painted them all, along with the knobs and other hardware. I painted the doors, too....and put them all back on. We had to pull out pieces of the wall to remove the dry rot and put in new support beams and new paneling and such. We have painted the 4-burner stove black and the front of the nice, big fridge black, as well.

And anyone who knows me knows that I have already painted silhouettes of moose and bear on some of the cabinet doors. Oh, and pine trees, too!

I also am hoping we can pull it down to CA to see our son in a couple of months and park at the beach, and have him and his wife join us at times. I'd love that! Making campfires at night, making S'mores, and visiting and getting reacquainted with each other.

Our spring was nice and cool here and oh, how I loved that. Now, the days are heating up and the AC is cranking out the cool air. I'm so thankful for the AC! I've had alot of times "paying the fiddler" for the work I try to do in the garden, especially when people are coming for a visit and I want things to look as good as I can. Perhaps that is something I've learned this year, learned the hard way: that loved ones come to see us and not our flowers and don't even notice the weeds. Or if they do, they don't mention it. That is why we LOVE them!

God bless you, dear reader!

Thursday, July 1, 2010

What I learned today...

at pain management.

It helps to write it down so I might remember later.

My wonderful pharmacist/co-pain-manager told me that I still need to rest. Even if I feel better because of the meds, I need to still lie down, get the weight of my head off my spine and rest.

He could tell that from my telling of the events of last week, that I am an over-doer (being a past over achiever and work-a-holic).

I had somehow thought that the meds would take the pain away and I could do more...get out and do more...achieve and accomplish more...do those things that produce those good ol' endorphins that naturally deal with the pain, though only for a moment and then the fiddler must be paid.

I learned that the things I so love to do are my enemies. I learned that those things I love to do cause my pain. Perhaps like a woman who is obsessed with a man who is no good for her, I need to learn to walk on the easy side of the street and avoid that fatal attraction.

And now, I've forgotten the other important things I learned in their office today. I'm sure it will come back to me later and I will add it to this post. I remember it was an epiphany, just as the one I just mentioned was.

Pain Management

Today I went to my new PM folks. They are simply wonderful.

As I've written before, I see a Physician's Assistant (PA) and a Pharmacist together each time we meet, and they ask me pointed questions which, in the end, make a world of sense to me. Nina and Eric are their names. Good folks.

I am now taking Oxycontin with oxycodone for breakthrough pain, along with nortriptyline at night for sleep (and controls the pain during the night). I also take 90 mg of Cymbalta.

I had a rough two weeks since the last time I'd seen them. I had a good visit with my mother (from NH) and my sister (from Hawaii), and then a very close friend from Maine came to visit, along with her husband.

I would have been okay and recovered from that, but I did a "number" on myself when someone locally wanted to trade his property for ours. I love where his property lies, in a pine forest with no lawn or flowerbeds to care for, only pine needles. Just what I need.

The yard here is too much for me to take care of. My husband mows the lawn, but I try to take care of the watering and light weeding. I love gardening, but it's truly too much for me. When I try to do some weeding, I lie down next to the flower bed and pull weeds that way sometimes.

So, I think having a yard in the middle of some pines would be just what I needed. That any energy or strength I might have could be used for some easy walking. And that's another thing, we don't have any easy walking here. The road is too busy, and it has no shoulder to walk on. And across the road is a great place to hike, as it leads down into a canyon and back up the other side, but all of that is beyond what I can do now.

Back to the other day and how it affected my pain level.

I weeded in the yard one whole day and I did housework for one day as I prepared the place to be seen by a potential "trader." The one night, I was up at 9:30 pm weeding!

My hands swelled up and were so weak and painful!

As it turned out, though the other guy did want to trade, we did not. We loved the land at his place but the house was a triple-wide manufactured home and that was simply too big for me to take care, vac the carpets, etc.

As I looked back, though, on the days I spent preparing to show our place, I realized that I was obsessed and was having a serious lack of good judgment when I worked so hard. The pain is still with me, though it lessens each day, as I pay the fiddler for overdoing.

I asked my husband to strongly tell me to stop working so hard if I ever go into that mode again. He said I've worked that way all of my life, which is true. But "no can do" anymore!

So, the pharmacist today decided that we should keep on with my meds and dosages the way they are for now, because it is hard to measure their failure or success when the last two weeks were not the "norm" for me. I thought that made good sense.

I began to cry big ol' juicy tears at the end of our session, just because they are so nice. So caring. I am so labile any more. I cry at anything, almost. And especially when I am around people who are sincerely kind to me.

Wednesday, June 30, 2010

Long time, no write

Okay, this has been terrible....soooooo long since I've written. Now, I have a good reason. My hands have gotten really bad, painful and weak. But, I will just write some short updates and that way, for those who follow here, if you are still around, you get updated.

The results of the sleep study were that I have Central Sleep Apnea. I knew I did, but this was the first official diagnosis of it because the other sleep study I had done, the techs were very inefficient and the sleep clinic closed down two weeks after I was there, so I never got a true analysis.

From the Mayo Clinic website:

Central sleep apnea is a disorder in which your breathing repeatedly stops and starts during sleep due to lack of respiratory effort. Unlike obstructive sleep apnea, in which you can't breathe normally because of upper airway obstruction, central sleep apnea occurs when your brain doesn't send proper signals to the muscles that control your breathing. Central sleep apnea is less common, accounting for less than 5 percent of sleep apneas.

Central sleep apnea occurs when your brain fails to transmit signals to your breathing muscles. Central sleep apnea can be caused by a number of conditions that affect the ability of your brainstem — which links your brain to your spinal cord and controls many functions such as heart rate and breathing — to control your breathing.

The doctor offered me the CPAP machine, said what I have warranted it. But also said if I didn't want it, he wasn't going to push it on me. I didn't want it!

Thursday, May 6, 2010

Scenes on the way to Sleep Study appt.







Quick notes

I have written down a few notes of things I want to publish here, but never seem to get around to doing. So, here are a few of them in random order, for whatever they are worth.

It was while I was sitting in the waiting room awaiting my consult with my new NSG that I read in a neurological magazine about tau. I will not try to explain anything about tau here, but I trust the reader will do so for him/herself if they are intrigued.

I read that the presence of tau in the cerebral spinal fluid (CSF) indicates traumatic brain damage.

This can be relevant for the patient who has suffered a concussion or brain injury, yet the MRIs are not showing any (or enough) lesions to impress the doctors. If you are up for a lumbar puncture and if the doctor would okay this test, and if tau is found, it can be the evidence you need.

But, keep in mind that LPs for many people are a risk, especially if you have arachnoiditis or Chiari Malformation. Check with your doctor.
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I have stumbled upon the best home-vacuum for someone who has weight-lifting restrictions. The name of the vac is LiNK cordless by Hoover. It comes with a lithium battery, and has suction that outperforms any other vacuum I have tried. The battery lasts long enough to do a full room or two, so it's not for someone who is professionally housecleaning. However, for those of us with disabilities, we should probably be resting between rooms as we vacuum anyway. If you are like me, I vacuum one room, then leave the vac waiting in the next room until I have the energy or "spoons" ( http://tinyurl.com/ybn8a6z ) to do more, which means the vacuum sits in that room for two weeks or a month!

This vacuum doesn't use bags so you don't have to purchase those. It has a plastic cone that creates a tornado of suction that fills the clear plastic cup quickly of debris and dirt, pet hair, etc, from your carpet or rugs. You don't have to touch the stuff to dump it into the trash either, you just hold it over the trash can and press a button and the contents spill out into the trash. I love it!

No cord to mess with so you don't have to bend over to plug into outlets. The appliance is relatively light in weight. I think it'd make a great gift for an elderly loved one, or someone who is disabled. The cost, I believe, was about $130-150 retail.

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A blog reader and e-friend sent me a great book, titled The Bear's Embrace; A story of survival written by the late Patricia Van Tighem.

Do you know of someone who has experienced a "near-death" experience? Or perhaps you have, yourself? Look for this book on the internet. It has been re-printed many times with various covers, I noticed. It's a fascinating read especially for someone who has suffered Post Traumatic Stress Disorder.

As Ms Van Tighem wrote and described her symptoms after the vicious attack by a grizzly bear while she and her husband hiked in Canada, I knew before she related the tales of the eventual diagnosis by her doctors that the author was suffering from PTSD.

This is a tragic tale, especially if you find out (as I did, later, when I looked up the author on the web) that eventually, Ms. Van Tighem committed suicide due to her condition 7 years, I believe, after the bear attack.

This is a great book for family and friends who believe that once a person has gone a certain time after his or her "near death" event, they should pick themselves up by their bootstraps and move on. They should "get over it!" This book emotionally and graphically tells the tale of our struggles with the mind.

If you are the PTSD-sufferer, then this book will put into words your story.

And, if nothing else, it's simply a great read!

Thanks, Lisa!
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Also related to this topic is a thought I had and wrote on my list of things to add to this blog.
The thought came to me, after reading the above book, of the fact that when cougars, big cats of all kinds, bears and wolves go "for the kill," they most often go for the skull base area. The back of the head.

I have so often felt and oft-mentioned to people that I believe that region to be the center of all life in the body. Injuries there can and do affect every part of the body and all systems. (Often, less-than-knowledgeable doctors will say that injuries in that area cannot cause symptoms in the lower extremities, but they are wrong. My new NSG ... or I should say "ex-new-NSG" said the same thing to me...and he is wrong. I have read medical articles that state if someone has injuries high enough up in the Cspine, they will cause "below the waist" symptoms...and I know it from my own experience.)

The wild predators of this world know where the source of life is within the bodies of their prey. And we can take that to the bank.
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Another note I made while sitting in the waiting room for my NSG (he was four hours late for my appt that time due to an emergency surgery) came from reading another short piece in Neurology Now, I believe.

It spoke to those of us with skull base issues (ie Chiari Malformation or someone with cranial settling, cranio-cervical instability, retroflexed odontoid, basilar invagination, traumatic injuries to the area) stating the importance of not-trying to get the last sip from a bottle or soda can.

Lifting your head up and back is exactly what you should not do if you have skull base issues.

Rather, use a straw to get that last sip, or forego the delectable pleasure of stealing that last, delicious sip!

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When I got my dog, Mickey, I was driven north to a town 80 miles away for an appointment with an orthotist, to get my new (at the time) CTO (cervical thoracic orthotic) (or "big honkin' brace"). I asked before I went (who drove patients to doctor appointments for the county) if it would be possible for me to carry home a rescue-dog that the shelter volunteer would bring to the doctor's parking lot.

I was told that it was against policy for the driver to take a patient anywhere except to the actual doctor appointment, and that pets were not allow. However if it was to be a service-dog, then it would be allowed.

The kind lady on the phone (ours being a small and scarcely-populated county) told me, "I'm sure that new dog qualifies as a service dog in some way! Yes, we can do it!"

I've had that dog for two years now and he's been such a blessing to me. Heck yes, he's my service dog! He follows me everywhere I go, from room to room. I simply cannot go from a room without him at my heels, even two years after we picked him up.

I blogged about this when I first got him, but to refresh, this dog had been left in an orchard after the fruit pickers had moved on. When found, he had a scar almost all the way around his neck/throat. Most likely, someone had neglected to exchange a too-small collar for a larger one as the dog began to grow too big for the puppy-sized one. That's my guess, anyway. He has a white-hair line around his throat to remind me, but I doubt he remembers. He's the most forgiving and loving dog I've ever had.

Mickey is a standard-sized Dachshund, and people who see him often remark they've never seen one like him. Most people think of Dachshunds as the miniatures most often seen these days. Mickey weighs 35 lbs. and is black and tan in color. I think he's the most handsome thing going!

When I lie down for my naps each day, Mickey is instantly at my side. He crawls under the covers and stretches out and places his warm body all along my back or side. This is so comforting, I can't describe it! Often, my pain is centered at the small of my back, where I had the tethered cord surgery, and Mickey seems to instinctively know that.

Yes, he's my service dog. He's smart enough he'd do anything I might have the energy and strength to train him to do. That, however, is the rub! But what he knows and shows that comes straight from his loyal heart is "just what the doctor ordered!"

random updates

I need to get updates on here, but being at the computer has become more and more painful.
So, I will just copy/paste a note in here that I just rushed off to my sister. It won't be very prettily-written, but it is an update of sorts.
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Being on the computer just seems so much harder than it used to. My husband has suggested a laptop, too...but I think looking down at the screen and typing with arms moving will be hard no matter where I'm at. But in the future, that might be something I'd like to look into.

I thought that the atty was talking like he'd get me anything to make my life better, after they found me 100% disabled, but I sent in a scooter proposal and have heard nothing yet. I wished I had had one when we went to the car show in town a couple of Saturdays ago!

Let's see...I went for the sleep study a week ago, last Thurs night. The tech gal told me I do have apnea, both central and obstructive. I go back to talk to the sleep doctor when I get back from AK.

I was surprised to hear them say I do have apnea since these tests always seem to show up with nothing. I guess that proves the brainstem compression that [the new NSG] denies I have. And Dr. Shelat in NY showed us very clearly on the MRIs...

Friday, [my husband] picked me up early at the hospital and we went home and I think I went right to bed.

I think the weekend was uneventful, I can't remember any of it now.

Monday, both [my husband] and I went to our primary to get new RX for our pain meds since we'll be getting back after the RX runs out.

We went to town yesterday to fill the RX, and met with opposition because we were told it was too early to fill it, insurance wouldn't allow it. We went to our reg. pharmacy and they were willing to fill one. So it goes.

It was sooooo windy and stormy all weekend and then yesterday too, big black storm clouds all across the plains and occasional squalls we drove thru.

The hills are lovely and green and covered with flowers!!

Friday, April 23, 2010

"Thinking in Pictures"

I picked up a book in the lending library on the neurosurgical floor at OHSU. The title is "Thinking in Pictures: and other reports from my life with autism," by Temple Grandin.



Those who have children with autism are probably familiar with this author and perhaps this book. If not, then I highly recommend it, but the author is so well-known, it's hard for me to believe that parents of autistic children are not aware of her work.



She is also well-known to livestock producers, and hence, to me. I became aware of this remarkable woman at least 20 years ago as my husband and I started on a journey of enlightenment on the topic of cattle handling.



Ms. Grandin is a heroine in so many senses, but especially so since she turned what might have been perceived as a curse (autism) into a blessing. Her way of looking at things and experiencing life has given her insight into the way animals see the world. With this knowledge, instinctual and profound, Ms. Grandin began to investigate the way cattle were being handled through steel alleys, corrals and chutes. I won't go into the theories of her radical ideas here, but will mention that over the span of time and decades, her changes to livestock facilities have proven to work and result in much less-stressed cattle. Her curved alleys, sweep tubs and squeeze chutes have less impact on the cattle and cause less frustration and labor for the handlers. In the cases of slaughter facilities, less stress and impact on the cattle means a better product, and most of all, a more humane way of doing things.



However, having said all of that, I'm writing about this book in this blog for a different reason.



As I began to read about Ms. Grandin's life, due to my interest in handling livestock, I became aware that so much of what she was describing of challenges for those who are autistic seem to relate, at various levels, to my own struggles with traumatic brain injury. I have not finished reading the book, and already I plan to read it again as soon as I am through. I have marked a few places that really speak to me, and which I want to chronicle here.



As we all know, when someone writes and describes something that we are dealing with yet lacks the words and skill to describe, it is a wide-eyed discovery. I feel as though I have found something that truly applies to me, that someone is speaking my language. I definitely feel less alone.



Could it be that certain, acquired brain-injury defects actually resemble the congenital defects found in the brains of those whose challenges lie found on the autistic spectrum? I've never thought of it before, but why not?


Ms. Grandin suggests as much in her quote from page 137 the book:

According to Antonio Damasio, people who suddenly lose emotions because of strokes often make disastrous financial and social decisions. These patients have completely normal thoughts, and they respond normally when asked about hypothetical social situations. But their performance plummets when they have to make rapid decisions without emotional cues. It must be like suddenly becoming autistic.

I have made many notes from Thinking in Pictures and hope to make a follow-up post soon here to reflect upon the many similarities between various, high-functioning levels of autism and Mild Traumatic Brain Injury.

Tuesday, April 13, 2010

Update since my NSG appointment yesterday

As you know, the last time I went to Portland, OR (OHSU), the neurosurgeon (NSG) surprised me by saying I needed to have screws put in place to hold my head more solid on my spine, that he was advising me to do this, that it has been six years and no one has done anything to help me and I need to go ahead and get this done. (this was surprising to me because I have not had anything happen for me, surgically, to correct the problems of my non-union breaks in the C1, and because this surgeon had told me on my first visit to him that there was no way he'd perform surgery on me).

I felt very positive about surgery and life in general since he said that. On March 22, I had a new CT scan of my C-spine done at OHSU, so I went back yesterday to hear if they had found anything new on the CT, and to ask a few questions about surgery, and then I planned to tell him to schedule me for surgery.

Why this happens to me, I just don't know. But yesterday, the NSG was very different. He was nice enough, but he spent a lot of time (and kept coming back to it) telling me that there is a risk I could die from the surgery or I could have a stroke and be paralyzed, or I could go through it all and come out worse than I started. I don't know if he felt, in retrospect, that he had previously been too encouraging about the surgery or what. But this time, he was the opposite. And he seemed kind of ignorant of the whole thing.

So, I ended up not feeling as confident with him as I had been before, and he instilled a lot of doubt in me from telling me over and over all of his caveats. "I DO make mistakes sometimes," he even said!

Obviously, I didn't schedule surgery!

He mentioned that I should have an injection at the back of the head to see if that alleviates any pain back there. That would indicate what the surgery might do for me, he said. I had been wary of having any epidural shots due to my arachnoiditis, but he said these shots are into the muscles and nerves only, not in the spinal canal. So, I am thinking I might try these injections. Maybe they will be successful and the way I should go.

As he panned over the mid-sagittal image of my entire Cspine, I saw something that looked out of place. He was panning quickly, as the imaging program allows. As he panned past that place again, I noticed it again. When he, for the third time, panned past it, I called attention to it.

With pen pointing to the questionable area in the CT, I asked, "I know this is the odontoid, this is the anterior of the C1 and this is the clivus, but what is this bone? I've never seen that there before?"

He replied, "Oh, that is bone that is not supposed to be there. It is probably something grown by your body to try to stabilize your skull."

Indeed, it did look like chinking, a pretty big piece of bone lying in the "V" between the front of the C1 and the front of the skull (clivus). I asked my NSG if that could be causing any problems and he said no, "There are no nerves in that area." I am wondering now if this blob of bone could be affecting my swallowing perhaps, as an actual obstruction (instead of brainstem compression).

I also noticed how much closer the tip of the clivus (part of skull in front of the foramen magnum or "hole" in the skull that allows the nerves and spinal cord to run down from the brain through the vertebrae of the spine) is to the tip of the odontoid.

The odontoid is the front piece of the C2, around which the C1 rests and it all acts as a joint/cog that allows the head and neck rotation we are used to. It looks like a big finger sticking up and it is supposed to be quite a few millimeters away from the clivus/front of skull. I have been watching this with interest over these last years, whenever I get new imaging done, because as that space narrows, it indicates cranial settling, ie that the cranium/skull is settling down onto the C2/odontoid. I have watched as that space narrows on me. No doctor is as interested as I am, and quite frankly, they don't like it when you point things out to them anyway. THEY have hundreds of patients to think about and recall their imaging. I only have MINE. And I know it very well.

I did ask my NSG yesterday about that space narrowing and without any deliberance, he stated simply, "You did not break the C2." I knew that. But I am also very familiar with some of the signs of settling, which does not have to have anything to do with a C2 break.

oh well....insert long, drawn-out sigh here...

All in all, I have lost faith in this doctor. I liked how congenial he was, but that is not enough. And I didn't like how he started to rush me out after 15 minutes, which he has done the other two times I've seen him. How can I figure these things out and help my NSG to do so, when he only wants to spend 15 minutes with me? Such as my questions about the new blob of bone that is "not supposed to be there?" A blob of bone that he did not see and I was able to point out to him?

So, I'm sort of in limbo-land about that right now. I had built up a lot of hopes about surgery (again!) but I guess I've learned not to invest too much until the deal is sealed!

What a turn about, huh? anyway, I wanted to let you know, and I'll keep you posted. Thanks for caring and for your prayers. I'm doing just fine, it's just another jog in the road and I'm used to that!!

Sunday, March 21, 2010

Delk?





We have these deer in our back yard lately. The little one, last year's fawn, is running with a doe from the previous year's crop of fawns.
We've never seen a deer colored like this. She is not shedding off, and doesn't have mange or something. I know because she came right up under my window and I took photos through the glass of the window, sneaking the camera between the slats of the mini-blind. This lighter colored hair is fluffy and long.
She has this striking pink-hued hair over the middle and back part of her body. And I didn't get it on camera, but the white under her tail is amazingly white, even when compared to the white under the tail of her friend.

The front half looks just like a normal deer in this region.
We do have elk here, though have not seen any in our yard yet. This yearling almost looks like a cross between an elk and a deer, since the back part of the body is lighter than the front. I am probably way off, that probably doesn't happen. But it is fun to watch her! I'm afraid she may not last long, colored the way she is. She will stick out to predators like a neon arrow!
And we DO have predators here! A couple of weeks ago, a cougar was killed 3 houses north of us, and the newspaper is reporting a cougar hanging around town (we are at the very end of the city limits of this little, country town). Across the road from our home, there are miles of wooded canyons with rocky cliffs and dense brush. I've often thought it would make an ideal habitat for a cougar.
My feelings about cougars is this: if they are coming right into your yard, looking in your windows, hanging out under the porch to sneak a bite of your dog, then they need to be shot and killed. You can't hardly "relocate" a mt. lion, their range is 100 miles radius. The local big cats need to be "trained" to stay away from humans and homes and shooting one to do that is probably the only way to do it. The lion shot in our neighbor's yard came into a yard full of lion-hunting dogs, so confined dogs don't seem to scare them away.
But I am absolutely against killing cougars in the wild, away from town. I guess if I had a herd of sheep and one was coming in and killing the sheep, again, I'd want to shoot one. But just to go out and hunt and kill one because it is a cougar, no way. I love them so much and they are just part of nature, a sign of a healthy ecosystem.
I've only sighted 3 cougars in my life. So much of my life, I've ridden alone or with a riding partner up high in the mountains or in the desert. At other times, my horses have left their tracks on lonely plateaus or crossing canyon streams. I have watched the cliffs and rocky outcroppings for cougars, and rode for 30 years before I spotted one, and it was just a quarter mile, if that, from my home in north-central Washington state.
A few weeks later, I saw the same cat hunting a deer on a sage-blanketed hillside about a half mile from our ranch.
And, we saw one last year crossing the road in front of our car about twenty miles from our house here in south-central WA.
I love these elusive animals!

Thursday, March 18, 2010

The NSG report

I remember clearly when my old NSG in NY told me in January of 2007 that if I were in a car accident, my C1 would slice through my cord and kill me. He also told me if I fell off a horse again, I'd die. That was the day I gave up horseback riding. I never rode a horse again when I got home and still haven't.

When I sat in his office last June with my sister beside me, and he was telling me that my C1 was all healed, that bone had grown into the empty spaces in my C1 ("spontaneously healed", he wrote in the report), my sister asked if there was still a concern about my being in a car accident. He answered, "No, that has all healed, has all filled in with bone."

My sister asked that, I'm sure, because she is always so nervous driving me anywhere, feeling like she has my life in her hands. You know, the white-knuckled ones gripping the sweaty steering wheel!

When I saw Dr. R in Portland on March 8, he told me that if I fell off a horse, I would not be killed, I would not break my C1 again (how can it break again, it's still in 4 pieces, he tells me). He said I wouldn't die of a broken neck in a car wreck, either. My husband had told him what the NY NSG had said, and he'd asked the Portland NSG if he agreed with that. Dr. R was quick to disagree with the NY guy.

"Naw, that's not true!" he said.

Then, I got my hands on a copy of his report to my PTP today. I read, "She asked about cervical spine instability, I explained that the flexion extension views of her cervical spine from 11/09 did not show any evidence of instability, so I believe her chronic bone non-unions of her old fractures of C1 are not grossly unstable, but could potentially be at risk of catastrophic failure under the right conditions (e.g. MVC)[sic]."

Did he tell me that and I have forgotten it? My husband doesn't recall it either. I suppose he reported that he told me something he didn't because he was so busy. Remember, he was in surgery that day and I had to wait four hours to see him. I know all the other patients there must have backed him up late into the night and then to dictate his reports from the consults, it all probably means fatigue was a factor.

But it looms kinda dark in my mind: "catastrophic failure" under the right conditions, e g motor vehicle crash.

Catastrophic Failure of the C1. Vivid imagery indeed!

I have to admit, yesterday, I remembered the NSG saying I would not necessarily die from falling from a horse and my husband was sitting right there, so he heard it too. In my brain yesterday, that meant (I must be slow, since I was connecting the dots ten days after seeing the NSG) that I could get a horse some day! If I got better and stronger and could take care of one, I could get a broke horse and ride again!

My mind leapt from possibility to gleeful possibility. The door seemed to open into a whole new future and it included HORSES again. I'd forgotten the doctor said that, and now I could take those words out and have fun with them, glean future hopes from them. And I did so, with gusto, sharing my feelings with my husband who just remained silent as we were driving along.

This morning, I considered our fenced, back 3 acres and how great they'd be for a horse!

I got to enjoy those hopeful thoughts for about 15 hours, until I read the NSG's report and saw the words "catastrophic failure." I know my husband will not want me riding horses again because of those 2 words.

Up until now, nothing had been put into writing. Though the NSG in NY had said those words about hypothetical car accidents and horse wrecks 3 years ago, he'd never written it out.

I am leaning more and more toward having the surgery. I don't know this doctor much at all, though I did a bit more research about him online and did find he authored a paper on occipital-cranial fusions in infants. He's authored a lot of other medical articles, as well.

I perhaps don't have the faith in HIM that I had in my last nsg. Maybe that's a good thing. Having a ton of faith in the last one didn't do me a whole lot of good, frankly speaking. And I need to be having faith in God above, need to keep my priorities straight.

I'll let you know what I decide, you can be sure of that.