Monday, December 31, 2007

His Eye is on the Sparrow

Some of things I'm thankful for in the last year:

Our new home and town
Getting the correct diagnosis in NY last January
Finding surgeons who know and care.
A glorious time together with my husband
Celebrating 34 years of marriage
Our son doing so well
One surgery down (one to go) in NY

The snow-blanketed mountain that watches over our town. It happens to be the largest in land mass in the lower 48.
The strength and faith and confidence that knowing Jesus has given me.
The love and support of so many good friends.
My family's love and support.
My old horse doing a good job and having a good home at our old ranch.
The 8 years we had with our little dog lost, and the fact that now he's no longer in pain.
New friends made online and here locally.
Fresh opportunities.
Good and friendly doctors here.

And oh, so much more. I am blessed beyond words.

Today, I kept my appointment with the physical therapist and when he first came in and I told him that I didn't think I was ready for therapy, he gave no argument and released me from his care for now. I told him that after my fusion and the halo is removed, I will be 100% committed to his plan for treatment and recovery.

I had a very rough night last night, just sort of walking the floors because when I'd lie down, I would feel such buzzing in my legs and a lot of spasming in my calves. Finally fell to sleep about 2:30 pm.

What a gloriously sunny day today and we went for a drive to our bigger, "shopping" town and oh, my! Once again, the scenic beauty which surrounds us never becomes banal or common to me. We drive through a National Scenic Area to go shopping! How wonderful is that?

I'll just have to stop and take a picture sometime for you!

Tomorrow begins a new year. What will it hold for each of us? It is a good thing that we really do not know. That is one thing I learned the hard way: none of us knows what the future holds and we may have grandiose plans or even simple dreams, and our lives can take a U-turn or a strange-looking exit and we then find ourselves on a road not of our choosing. Yet, once down that road, it can become evident that there are blessings around every corner, treasures we'd never have experienced if we'd stayed on the rutted, shoe-weary trail.

Another thing I've been thinking about lately is also connected to my injury almost four years ago. I have learned not to fear. Oh, I might worry or be anxious. But I do not fear. Somehow, that emotion has left me, hopefully for good. No matter what the message, I trust God will handle it for me. No matter what occurs, I have learned to almost immediately let it roll off of my shoulders.

That is not to say that I do not become overwhelmed at times, but there is a difference between fretting, over-stressing, anxiety, and the fear that things won't work out for the best. Perhaps it takes a few journeys down those unexpected pathways that lead through the barren desert for us to truly comprehend that we are cared for in every dimension....that His eye is on the sparrow and therefore, most surely, He cares even more for us. That every hair upon our heads is numbered in His eyes.

His breath carries the scent of ultimate love; infinite patience; unquestionable power and unspeakable compassion. Just knowing Jesus is on our side makes the next year, and the next and the next all worth anticipating with youthful happiness, like a child who builds in excitement for the summer, county fair. He is there ready to lead us through the storms and over the mountaintops, and the view from up there is heady. All we have to do is take that exit.

Happy New Year to all of my friends and to all who read these humble words. You need a strong shoulder to lean upon; arms to encircle you with safety and warmth; and promises that tomorrow...that next week or next year will bring a brighter day. Sigh...what a gift that is right there for the taking.

Sunday, December 30, 2007

Change in plans

After a very hard night Friday, I woke up Saturday morning and said, "Okay, I'm sick here and I am going to start acting like it! I'm going to take it easy, walk slowly, sit around a lot, lie down as much as I need to, stay in my pajamas most of the day."

I started weaning off the Percocet, knowing I was running out of it. Started having a lot more pain and that all-over burning electrical feeling that I get when there isn't enough medication in me to mask it. But at least those symptoms make me stay home and lie around. Be sick. Be a person who's recovering from a surgery.

It's amazing to me that an online friend of mine who lives in Oklahoma, and myself, who lives in Washington, ended up having our surgeries at the same time on the same day. We were in adjoining operating rooms. We talked today for an hour, rehashing events. And she said, "You had an ATYPICAL tethered cord surgery and it's going to take a long time for you to get back on your feet." That really stuck in my mind. Words that I needed to hear and heed.

So, things are changing for awhile for me. I'm going back to being that recovering patient. If lazing around all day will make it so that I don't wake up with burning hips and thighs at night, then it's a good thing, Martha!

I'm over five weeks post op and my surgical site is flat as it can be when I wake up in the morning, but in an hour or two, it is again very swollen. Not the incision itself, that has healed very well, but just that large area in the lumbar region. The physical therapist looked at it and said, "So you had a fusion of several vertebrae in your lumbar spine?" and I said, "No, I only had a laminectomy of L4, then the tethered cord surgery." He said, "THAT incision is big enough for much more than that!"

Of course, I doubt the nice PT guy in our little town has dealt with TC before. In fact, I know he hasn't, because I asked him.

No, the incision is very nicely healed, it's the stuff down deeper that is taking longer. That's what they say, that you heal from the outside in. At least, I think that's what they say!

Anyway, not to worry, I'm doing better than the last post. Just readjusting my days and my medications and my way of thinking. It all seems to be working. I feel good about it.

Friday, December 28, 2007

When the meds wear off...

When the meds wear off, I get that metallic taste in my mouth again.
I feel pain and soreness in my incision area.
I feel strange, electrical pain on the insides of both sides of my waist.
I feel a sort of deep, hurting goose-bumpedness all over my body.
The outside of my left thigh goes back to being numb.

And yes, these are all new sensations since I had the surgery. I only slightly worry about these things because my tethered cord surgery was so complex. I was told at the hospital that for every hour you are under general anesthesia, it takes a week for it to get out of your system. I was under 7.5 hours. It has been five weeks since my surgery. I chalk up the metallic taste to those strong pain medications and the anesthestic...or maybe it's the medication they gave to me (thankfully) that caused me to completely forget the experience of being intubated while awake.

Sometimes, I really don't feel all that strong. I don't want to be me anymore. I don't want to know what the inside of a NY operating room looks like or what it feels like to hang from tongs in your head during invasive cervical traction. I'm thankful, certainly, for being in touch with such renowned surgeons and it's been such a long road getting here, but now, I'm in the middle of it all. And now I wish I were not.

It's akin to being pregnant and the labor begins and you know, this is it. There's simply no turning back now. Things are pretty much out of my hands from this point on. I don't know what's about to happen, but I know it's hurting. You can't say, "Okay, I don't want to have a baby. I changed my mind. Let's stop this right now and let me off this bus, okay?"

But it's not okay, because you do have to go through with it.

Getting bucked off a horse is like that. Time passes a lot quicker, but when it's happening, you know inside of you that you have lost control and you have lost your balance and from this point out, it's out of your hands and there is no going back. You're up high on top of a horse and you have no clue what he is going to do next, which way he'll turn or buck and you bravely hang on or try to ride it all out, but deep inside, you know it.

You know you are off balance. You know this isn't going to end well. You know that how you fall and where you land is completely up to Someone other than yourself. You thought you were a good cowboy and you could handle it all, but right now, you are a rag doll and at the mercies of something other than your own skill.

Yet those two analogies are different in that I could not turn back in those instances. With the upcoming surgeries and the halo placement, I actually CAN change my mind. I almost wish I couldn't, because my mind is haunted by the thoughts of upcoming surgery every day, most of the day.

The other day I got an email from an old friend and she wrote happily, "Have you made any new friends there in your new home?" A normal question to ask someone. But I have come to accept that my life is not normal on a lot of levels. I can have pleasant conversations with people in line at the Post Office or with the grocery store checker, but I don't have the strength or the energy to "make a new friend." I don't hardly have the energy to make a phone call. I wouldn't be much of a friend. Though most of my old friends and online friends are the best anyone could want or wish for. I'm blessed that way.

Then again, I do have Esther. I think God put Esther next to me here. There was a big plot of land next to our property when we bought it and we were told, in fact, that no one could build there, that it belonged to the city. That privacy barrier and lovely patch of woods was a good part of why we bought this place.

A few months after we moved in, a bulldozer was unloaded on that property and big pine trees began to fall to the chainsaw. I could hear the saw, smell the saw mix (gas), hear the crack at the base of the tree trunk when it broke loose, see the floaty branches start to fall toward the earth where they did not belong.

At first, of course, I just hated it all, but then I was able to succumb to my nature, which is to put a good spin on things, if possible.

And those trees being taken down did open up a nice view of Mt. Simcoe that we didn't have before.

We watched the slow progress of site preparation and then saw the big, light blue manufactured-home come in on a trailer and being set up in what seemed like the blink of an eye. It took me several months to walk over and say hi to my neighbor. Just because I didn't have the strength to do it. But one day, I finally did, bringing with me a batch of home-baked cookies, welcoming her to the neighborhood. And I met that spry, tiny 83 yr old cowgirl with the straight, short gray hair that looks a lot like my own.

What a gift she's been. She calls me a couple of times a week and we always end up reminiscing about cattle work, horse work, the land, ranching, things that we have intrinsically in common. I can only surmise that Esther loves these conversations as much as I do, that she knows we're talking the same language and are cut from that same bolt of colorful cloth. Yes, we are kindred spirits.

When I visited Esther on Christmas Eve day, she revealed that she really didn't like the holiday much. Her husband died a few days before it about 12 years ago, and it's been tainted for her ever since. We both agreed that Christmas is not the same without little ones around. But then I thought of how much I enjoyed the Season when I lived in a similar small town up north. Back then, I knew almost everyone in town and they knew me. I was healthy and strong, one of the local, resident cowgirls driving the roads with her horse in the trailer heading for trailheads and high mountain snowfields.

I told Esther that I used to go to various events around town during Christmas back then. I'd take our son and go to story-telling get-togethers; handbell choir presentations; plays and such. Those things really helped to breathe life into the Holiday.

And I promised Esther that next Christmas, I'll be driving again and I'll take her to those kinds of events here. She smiled. Maybe, she feels hope about it just like I feel hope about it, but for a different reason. Perhaps the odd pair we will make will bring us both life and hope and yes, joy.

I guess I was wrong. Yes, I have made a new friend. And I am blessed.

Whadayaknow? It IS up to me!

After a rough night with little sleep and a consequently rough day, I got back into the truck for the second time today to head to town for my afternoon PT appointment.

I'm feeling ragged. I only have a day or two's worth of Percoset left. I called my doctor's office and they said he can't see me until Friday. No problem, I thought, I'm trying to cut back on the medication that makes my days endurable anyway. So, I've been trying to take one instead of two at time of dosing. Usually, that doesn't cut it and an hour later, I'm getting the 2nd one out.

Stopping first at the Post Office, I crawled out of the truck's passenger-side door, intending to mail a few small packages I have ready to mail. Seeing the long line of like-minded folks, I turned around and said to my husband, "I'm mailing these on Monday."

I crawled back into the truck and just moaned. I usually can buck up and don't do a whole lot of moaning, but not today. My husband asked, "Do you want me to just take you home and you can call and cancel this PT appointment?"

Wow, my pain-fogged brain hadn't thought of that! You bet that's what I want to do.

Back at home, I called in sick (ha), and told the nurse that I am not sure PT is for me. Yes, I had the tethered cord surgery, but I still have the severe problems up at the skull base. And I've been suffering two days just from the very careful, gentle evaluation done by Bob, the therapist.
She seemed to understand. I'll try to keep my appointment on Monday and explain it to him. I also need to ask if he'll prescribe a new Aspen Collar for me. The velcro is worn out on mine and I can easily make it slip off anytime I want to.

Then I laid down and slept an hour and a half. Just what I needed!

Earlier than they arrived yesterday evening, the small herd of yearling deer appeared again on the bank right behind our house. One looked at me through the kitchen window as I washed the dishes, showing off his 4" spike horns. The young deer have been hanging around a few days, nuzzling beneath the snow for the bounteous amount of acorns that fell from our oaks this Fall. Naturally, I love them.

Staying home and watching them did me a whole world of good more than going into the hospital today. Sometimes....I've just had enough of doctors and I just can't walk down one more hospital hallway.

Thoughts of the upcoming fusion and the halo fill my mind at least 2/3rds of the time. I know I simply have to go have it done. If it is hurting this badly, it will only get worse. But the whole scenario of the halo and possible problems with it gives many misgivings.

Wednesday, December 26, 2007

My PT appt and other stuff

Thanks, Cleo and Krista, for the encouragement about PT. You were exactly right, today was just the evaluation, as you said.

First off today, I received an email with an invitation to participate in something BIG that made me feel YIPPEE ...I was feeling just your basic joy.

On the way to PT, we stopped at the post office and a feller standing inside asked me about my neck since I was wearing my Aspen collar. He had also broken his neck and had had a regular type fusion and wanted to tell me about it. And of course, I told him my story.

I got the hospital where PT takes place, and explained my injury to a gal in a wheelchair who was there because she'd pulled a hamstring trying to get off a nervous horse real quick.

Next, I retold my entire injury and medical journey to the wonderful therapist, a man about my age and very wise, I could tell. He kept saying, "YOU are going to be a challenge!"

He had me walk for him a bit and stand on one leg, then the other, with eyes shut. He said my balance isn't that bad. Then, he had me sit up on the examining table with my legs dangling and he put his hand first on the inside of one foot, asking me to hold, with the strength in my lower leg, against his pushing hand. The therapist repeated it with the other foot, very gently, then observed that I have weakness in the legs, which I could tell, as well. But that pushing against his hand caused soreness in my surgery area, the lumbar.

Well, he set me up for twice a week, just a half hour at a time, taking it really slow and me dictating how much we do or don't do. I walked gingerly on the snowy sidewalk to join Pete in the truck, and he shared some mail with me that was good news and made me gleefully shout, "Hallelujah!"

Do you remember, gentle reader, when I told you about the difficulty I have if I bring up any energy, excitement or what I also call my "lifeforce?" How it causes all kinds of neurological pains and stuff?

I could not get home soon enough, and I grabbed two ice paks from the freezer on my way to the guest room. With the toe of my left foot, I turned on the small stove-space heater (whose buttons are down near the floor) and then crawled into bed with strategically-placed ice paks.

I couldn't take my pain meds, it was too soon for that. But the ice helped a lot. I fell asleep right there for about 90 minutes and got up and sat in the living room, where I started having horrid lancinating pains in my right forearm. My husband and I talked it over and chalked it all up to being excited and happy, plus retelling the injury/horse wreck story three times, in addition to the lower leg pressure test at physical therapy.

I'm all better now and vowing to write down a list of reasons to have the fusion surgery, adding how tragic it is that I have to pay for any joy-filled enthusiasm!

Tuesday, December 25, 2007

Benefit of the TC surgery

Yesterday, I walked next-door to my 83-yr old neighbor's house to give her the little basket of cupcakes I'd made for Christmas. We sat in her soft, well-worn living room chairs and talked for an hour or more. I love her so much. She is cut from the same cloth as we are, being a ranch woman who owned cattle and ranches all of her life with her husband in Wyoming and Nevada and then Washington.

When I stood up to leave, Esther said, "My, it's wonderful to see you standing so tall and straight!" I was so pleased, yet surprised, to hear this. I hadn't thought about my posture having changed since my surgery. Esther explained that she was used to seeing me sort of hunched over and that the change was quite noticeable.

When I later told my husband, he readily agreed and even said that I look 20 years younger since the surgery. Wow....(she says shaking her head)...this was all quite unexpected. Yet, it pleases me no end. I still hurt from the surgery and am still on pain medication, and I'm taking it very slow and following the instructions I was given from the physical therapist at the hospital in NY. But I still believe this surgery is a success. Just the near-miraculous change in my bladder symptoms is enough to cause me to tag the operation successful.

Tomorrow, at 10, I'll go to my first PT appointment. I'm not looking forward to it. I simply can't do anything that brings up any energy, things that are repetitive, or do anything that makes me sweat. That will trigger so many symptoms from the instability in my neck and whatever is being compressed there. We'll see how it goes.

Merry Christmas and Happy Whirly Gigs!

Here's a photo of the whirly gig I just completed. It's pretty rough, I guess, but it works! When we got the kinks out of it and the wind turned it for the first time, causing the woodpecker to peck up and down, I felt SO happy and so much like my Dad was with us. How he would have enjoyed this!

What gifts!

This Christmas marked a first-ever for me. I did not have one single present to open. Not one. Nada.

With a tight budget due to the NY trip for surgery, we decided not to really do the whole "presents" thing this year. Anyway, I got several presents before Christmas (our 34th anniversary was the 22nd) including 2 electric stoves that look like wood stoves, one for each end of the house.

Visiting the local dollar store, I found around ten nice little gifts for my husband to open. I always figure that the experience is about the "opening" of a gift, the surprise, and that can be provided quite inexpensively. I found nifty screwdrivers and Allen wrenches, work gloves and a motorcycle magazine. Just little morsels, little tastes of a gift-filled Christmas.

Alas, my husband just does not have the imagination to believe that a dorky, little 99-cent doodad would be worth wrapping up and gifting to anyone at this holiday, and I knew that from the get-go. As I said, we've been married 34 years. But I anticipated a box of stuff would arrive from my mother....and probably one from our I wanted to add to the experience by buying those little "nothings" for my husband. Those expected boxes did not arrive, but I wasn't shocked about that, it's pretty expected and you get used to it when you live across the country from your family.

Last night, Christmas Eve, we had a wonderful time. After dark, we loaded up the dog and went for a drive around our rural town to look at holiday decorations. We stopped at Dairy Queen right before it closed to get a hot fudge sundae to share, me spooning soft-serve ice cream and chocolate sauce into my guy's mouth as he drove. As we headed east, we saw the best decoration of all: a huge, golden moon was coming up over the hills! It was incredibly beautiful!

When we got home, I played Santa and, picking up the little wrapped presents from under the tree with my reacher-grabber tool (remember, I'm not supposed to be bending over), I'd hand them one by one to my husband. Even the dog got two wrapped gifts of rawhide chew-toys. Pete felt bad, he said, because I had nothing to open, but I was completely okay with it. And I was very happy because it was a fun watching him open those "made in China" trinkets, and I had wonderful gifts already, the stoves and the two lamps I'd picked out for our anniversary.

Today, after an enchanting night's sleep with the electric stove glowing in our bedroom, the day turned out to be perfect! Let me tell you how.

First, I didn't wake up in a lot of pain. I slept til 8:30! My husband then made us pancakes and bacon, a real Vermont breakfast, from the gift set sent to us from my sister who lives in VT. It was delicious and I almost forgot to mention the REAL VT. maple syrup!

I checked my email and received a really nice letter from our past employer in CA, the one who owns the ranch we left last March. It was such a heart-felt letter and let us know that we were missed. It meant a lot to both of us.

Next, our son called from California to visit and we had a great visit. He is doing so well.

Then, we watched "A Christmas Story" on TV. You know, the one where Ralphie dreams of a Red Ryder BB gun, the one with a compass in the stock? Once that was over, we took off for a drive, down through the Columbia Gorge to look at the weather because it is predicted for there to be snow in the Gorge, a unique event, I take it, from the tone of the Portland channel's weatherman.

We ended up going to the Roadhouse Restaurant which had a nice crowd of people out enjoying a Christmas meal without all the work of cooking and cleaning. We joined them for a tasty turkey meal with all the fixings. My husband and I shared a big platter of food, later topping it off with a slice of real pumpkin pie!

On the way home, driving down Hanging Rock Road and, as if on cue, it began to lightly snow. YAY!

Back at the house, I called my Mom to wish her a Merry Christmas and we talked for over an hour. Snow continued to fall and covered the bare ground outside. All in all, it was the perfect Christmas and I marveled at my blessings and NOT ONE of them had to do with a present, or even the process of opening one and the grand surprise factor!

Go figure!

Merry Christmas, gentle readers.

Thursday, December 20, 2007

another traction photo

Here's another shot of me in the traction in NY,
without the CT scanner in the way. What I notice
most is my neck stretched up nicely, something
it hasn't looked like in a long time. Talk about
sucking it up for a photo op! Some people have
looked at these and said, "Hey, you're smiling!"
That's just my need to keep other folks from
feeling bad about it all.
But I do look at this photo and it gives me that
mental push toward fusion. How I'd love to have
my neck look like this without having to endure
painful pins in my skull and 45 lbs of traction!
I've been thinking, and my philosophical musings have led me to an analogy that goes like this: idle words are like a road map.

You look at a map of highways and cities and it all looks flat. You see mountains and their elevations listed, but the words and numbers don't carry the weight that a picture might. You might tell someone that you are going to walk from Kansas to the Pacific Ocean, and they, in turn, might look up your intended route in a handy atlas in the magazine rack by their recliners.

And that scanning of a one-dimensional map, spider-webbed with highways, crisscrossed with creeks and rivers, and titled with canyons and valleys might deliver a rather twisted image of your journey.

Perspective is one problem. Have they been down that road themselves?

Relativity is another. Gee, from the looks of this atlas, you're only going to hike about ten inches. How hard can that be? Have a nice trip! Send me a postcard!

And that mono-dimensional outlook is really the main culprit. "Looks like a bunch of left and right turns to me! You ought to do it! Yes, my advice is to go for it!"

Idle words are so like that. "You should go for that fusion. You'll feel so much better!"

While I, the journey-woman, am left with worries and doubts.

Will I be rendered worse than I am now?

Will I have pain and infections like I've seen others deal with?

Has anyone had these cranio-cervical rods for 20 years and how are they doing today?

I jokingly tell myself, "You should climb Everest! It's only a couple of inches of flat, smooth territory."

But I know better than that and I can't fool myself.

So, this is what I find myself doing these days. I'm wrapping my mind around the whole deal. I'm affirmatively voicing my future plans: "I'm going to go have the fusion early next year. Then I'll have a halo on for three months. Within six months or so, I'm going to be feeling SO good." Also, yesterday, I told my NY surgeon that, yes indeed, I will be coming back for the fusion.

Maybe my words are idle, but it's a way for me to "try it all on and see how it fits." Stand in front of the mirror, look back over my shoulder and assess the whole outfit.

The New Testament counsels: "Let every man be fully persuaded in his own mind."

We have often been taught that each advancement, every great exploration began with a tiny step. But that's not true. Before the tiny step comes the firmly-held belief that we CAN do this. Before that "one small step for man, one giant leap for mankind" came the self-convincing of one person's mind that this is indeed possible. Without the strongly-committed mind of a once-doubting explorer, nothing would commence.

Surely there must be within the uninformed brain of a child, shakily holding to the living room coffee table and reaching for her Daddy's outstretched arms, some nuance speaking to the heart which says, "This is possible. Go for it."

Tuesday, December 18, 2007

The ol' homestead...

Not much going on around the ol' homestead these days. It's cloudy a lot of the time. We've had rain and the snow is all gone. Which is fine with me.

In order to enjoy a little, ongoing project, I am building my first whirligig. It's a large woodpecker pecking at a notch in a tree with the tree acting as the rudder of the whirligig. I'm now working on the wooden propeller, which will drive the woodpecker. I never knew whirligigs were so much work! I bought a book on how to build them and thus I stand at the woodworking bench in our shop, the wood fire humming in the woodstove, and feel strongly that my Dad is working along with me.

He loved whirligigs and made several of them. I remember one he made was a blacksmith shoeing a horse, each spin of the propeller causing the blacksmith's arm and hand with hammer to go up and down. I can imagine my Dad joking that that guy was never gonna get that "hoss" shod.

In his later years, after several strokes, he wasn't able to make things as well as he used to, but he never quit. He made several, very simple whirligigs, all cut out with a jigsaw with his good right hand, no propeller mechanism, just carved wooden props that would spin out on the end of a squirrel's front paws, the squirrel sitting as if he were praying.

I'm still feeling really good and I'm really taking it easy. We take short backroad drives almost every day. Today we drove down Badger Gulch Road to Woodland Road, then home via Hanging Rock Road. Wonderful views of the snow-clad Simcoes.

I told a friend online last night that my skull/neck issues are still around and are definitely not going to allow me to overdo!

Are you ready for Christmas? We are about done. We are not really getting anything for each other, though I did buy several little things for Pete to open at the dollar store. I sent off a box to our son in CA filled with home-baked goodies, some store-bought candies and cookies, and a small check. Everything has to be small this year, due to expenses forked out for the surgery trip.

How do I feel about going back for the fusion? I'm a tad ambivalent but more and more leaning toward the fact that I do need to go have the fusion done, since I have found such world-class surgeons to do the work. They say I will experience a great amount of relief when I have the fusion, so I need to trust them.

I absolutely don't like thinking about wearing the halo. I know someone who is having a horrid time with her halo right now. And like most people, I worry about being worse post-op than before. I don't want to be one of those people who seem to be continually having re-do's and revisions.

But the one statement that rings in my heart is the one my son told me on the phone. I was describing to him what must be done and my fears about it. We've always had such a blessed relationship and friendship. And he said, "But if you have the fusion, you would be so much more safe in the event of a car accident."

And that kind of reasoning is hard for me to argue with. For my family, getting the fusion done is probably the best thing I can do. But it all rolls off the tongue so easily, when in reality, it means months of pain and debilitation.

Have almost all of my cards sent out, so guess I'll close here and go finish up that project, and at the same time, continue gluing the wooden prop blades into the hub I built for the whirligig. A fun, winter project. I can only work an hour in the shop, but it's a nice hour, spent thinking about the wood and listening to Christmas carols on the local radio station.

Saturday, December 15, 2007

Inspirational thought

When she selflessly drove 275 miles through a snow/rain/sleet/hail storm to be by my side for my traction and surgery, my loving sister brought me a pewter angel with a saying engraved on one wing.

I want to share this with my readers today. To me, it felt like it was the message my angel of a sister was bringing to me just at the time I needed it.

"The world is round and the place which may seem like the end may also be the beginning."
Ivy Baker Priest

The ethereal angel is holding a globe. And reminding us all that the times that seem the worst may also be the old door creaking wide open to allow us to enter a blessed, hallowed place.

God bless you all.

Wednesday, December 12, 2007

I don't know...why?

Coming back from surgery last month, I was in Seattle in a wheelchair, taken by elevator with an elderly woman also wheelchair-bound to the ground level, outside.

Cold, spitting snow. Dark of night. Strange, new world. We were told to climb into the back seats of one of those electric airport vehicles. If my new companion felt anything like I did, she felt belittled, less of a person, damaged goods, different than the other healthy folks who were well-able to walk outside to the awaiting regional jet.

Up for a good surprise?

The driver climbed into the front seat behind the steering wheel. She was obviously an immigrant with an accent that would led me to place her birthplace somewhere south of our southern border.

With a big smile, she turned around to back up the vehicle, right arm over the top of her bench seat and she asked us, "Why do cripples travel?"

Was this a joke? Is there a punch line? Was she serious? Was she trying to say something in a new language that meant something else in her native tongue? My companion was speechless. I think I asked the driver, "Are you serious?"

Well, bless her, she definitely tops the list I have mentally stored away for the most bizarre question I've ever been asked!

Things I learned about going for surgery

I really have never had surgery before, unless you count when I was 8 years old and had a case of tonsillitis. I remember my Mom got me a fuzzy lamb at the hospital gift shop (The Hospitality Shop), and waking up with a tad of blood on the white fleece and crying for ginger ale, the promise the nurses made to me about post-surgery rewards.

So, when I went last month all the way to NY for surgery, so much of it was new to me, if not all of it. So, I thought I'd post here a few things and ideas and advice tips that could help other surgery-phytes like myself.

*Be sure, ahead of time, that you list all of your diagnoses and allergies. Don't count on your memory at a time of high stress and likely confusion.

* Create a small notebook of information such as family and friends' phone numbers, who you want contacted immediately after the surgery; taxi phone numbers; hotel phone number; your schedule (Pre-surgical admissions....invasive cervical traction....consult with your time)

*Think through the following: when you are admitted the morning of your surgery, you will not be able to have with you any personal items. They even took my glasses and gave them to my sister to keep. You will go through surgery, then go to the recovery room, then possibly ICU, and when you finally are taken to "the floor" and are ensconced in a regular hospital room, you will want some things there with you. So, it would be best to pack those things up for your companion to bring to you in the room. You could have a small bag with toothbrush, toothpaste, your little notebook of information, a pen, a light robe or a pajama top for walking through the halls, several pair of underwear, maybe a sleep mask, definitely some chapstick. The hospital will provide great non-slip socks for you, and you can even do without the robe since they encourage you to wear two hospital gowns, bottom one opening at the back, and the top one opening in front, like a robe.

*If you go a long ways to a hospital alone, like I did, for surgery, you have to figure out what to do with your luggage. You can't take luggage into your room, nor should you have valuables there with you, like money or a camera. I ended up renting my room for the entire stay, even for the days/nights I'd be in the hospital. I could keep my luggage locked up safely in my motel room, and any visitors I might have were welcome to use the room for free.

*Take a couple of those disposable cameras with you and carry them around with you, even to the traction. I did have a problem with this, in that one of the cameras ended up giving me only one picture, the rest just did not come out. But that's okay, I'd rather not lose or have my digital camera stolen.

*I didn't take my next suggested item, but I sure will next time I go!
A small, battery operated personal fan! The rooms in a hospital can be so stuffy, and I was really wishing for a little fan. They are very quiet, easy to pack, mine works on on D cell. I love air moving across my face, and OH, how I'd have loved having my little fan there!

*I bought at Big K (K mart) a bottle of Aloe Vesta Cleansing Foam, they had it behind the counter at the pharmacy. It is a no rinse cleanser, you can even wash your hair with it. At North Shore, no one offered to help me clean up (you can't take a shower post op, but it would have been nice to have some help cleaning up every day). So, if you want this, you will have to ask. I will next time!

*Bring ear plugs in case your roomate snores or you end up next to the door opening onto the nurses' station!

*As far as bringing something to read, I did not feel up to that at all. Nor did I feel like listening to music. I did not even hunger for a magazine to read and I'm an avid reader. But maybe that was just me.

*After surgery, you will be very bloated from the "gas" you receive during the surgery. The longer you are in surgery, it stands to reason, the more bloated you will be. It's good to know up front that this is normal.

*At the hospital I was at in NY, when I went off of the pain pump and onto oral pain meds, I did not understand that the nurses would only be bringing me those meds when I asked for them. They do not bring them every four hours (or perhaps it's all done per doctors' orders and mine said that I should only have them "PRN" or "as needed"). So, I waited a few hours and finally asked where my pain meds were and then learned that they would not bring them until you asked. This is probably not true for every patient or for every hospital.

*Get the bed next to the window if you can. You will have more privacy and a view out the window! The first few days, you won't care, but that last day or two, it would have been nice to be able to gaze out the window a bit. I was really missing the outdoors!

*If you walk in the room or the hallways, wear those slipper socks. I'm preaching to myself here. I'm a total barefoot person and I walked in my room all the time barefoot until another patient pointed out to me all the sicky germs in a hospital. She really got my attention when she said, "All that has to happen is a nurse drop a needle and then you step onto the contaminated substance on the floor!" Great visual...I "got it" then!

*If you are going to the North Shore hospital, a good thing to know about the menu for meals is that there is an "alternative" menu on the back. My room mate and I ordered from the main menu each day and wished we could have a bagel for breakfast...basically wished we could have more choices. The last day I was there, we found on the back of the menu that "alternative menu" with hamburgers and bagels and all kinds of good-sounding food.

*If you are going to North Shore and TCI, I highly recommend the Floral Park Motor Lodge. They have a fabulous TCI rate, and ask for a room on the 3rd floor of the main building. It's very safe, very quiet, very clean. I was very pleased. I got a room with 2 queen beds in it for only $65 a night! That might have been a reduced rate because I got the room for 11 nights, too, though.

*I think the next time I go (for the fusion), I will have a better frame of mind because I will know this: it may hurt may feel imprisoned in the hospital NOW...this may all seem horrid NOW, but it only lasts a few days and as soon as you get out, you will start feeling better and like your old self real quick!

* Do NOT schedule your surgery close to a big, national holiday! The hospital runs on a skeleton crew at that time and doctors are few and far between. Imagine tumbleweeds blowing down the halls of the neurosurgical floor and the wind whistling through the swinging doors of the linen closets. Shutters flapping and hinges creaking. 'Nough said?

*Do NOT go have surgery alone. You might think you can do it and you probably can, but if one thing goes wrong, you are alone and having to make decisions yourself, when you are not in any kind of shape to make decisions. Have friends take shifts being with you, whatever it takes to have an advocate there to be sure that things are happening as they should.

Saturday, December 8, 2007

The Surgery

Here I am during the traction the day before surgery. Note
the tongs attached to the big pins in my head, and I am
surrounded by an innovative CT machine so that the
procedure was done not only under flouroscopy but CT,
as well.

My Tethered Cord surgery was scheduled for 7:30 the next morning. I can't remember being awakened but I do remember two women pushing me on my hospital bed into the "netherlands" of the operating room area. It had to be quite early, yet there were many people here and there and the gals pushing my bed were saying hi to friends. This area that is off-bounds to non-medical personnel looked almost factory-like. No borders or pictures on the walls here. And if my "guessing" was right, there are several operating rooms in that area.

They pushed me up to two big double doors, pushed a button from the outside which would cause the doors to swing open, and then they moved the bed up beside the operating table.

The anesthesiologist greeted me with a big smile. He was Jamaican, a strong-looking, large guy with a big, toothy grin. I remembered him from the Invasive Cervical Traction the day before. He looked at the hospital bracelets encircling my right wrist, including the orange one that declares I am allergic to Sudafed. He asked me my birthday to be sure it corroborated the bracelets. He told me that I would need to be intubated awake, and I remember slightly wondering how ugly that would be. Someone injected something into my IV line and I was told that I would feel sleepy soon. I noticed one of the nurses as she unbundled stainless steel instruments, big ones, from a folded up, white towel. Another man came in and said something to me, but soon....

I woke up in ICU. I can't recall now if I was in a great lot of pain, I don't think so. But I was SOOOO dry. A nurse brought a little pan of ice chips to me and I gobbled them down and they brought a lot of relief.

My sister told me later that both neurosurgeons went to speak to her in the waiting room, telling her that my surgery had lasted 7.5 hours (usually, these tethered cord surgeries are 2.5 to 3 hours long). The reason for the great length, they said, was the fact that I had a LOT of tissue that was paper thin and needed to be carefully dissected in order to detether my cord.

One surgeon said to my sister that if I should choose to come back for the craniocervical fusion, it would help me a lot, and "dare we say it, but perhaps she could ride again. Others have." The other surgeon remarked, "Wouldn't that be a wonderful thing. Horses were her life."

It pleases me now to think that these surgeons were talking about me while they worked so diligently to cut away the paper-thin tissue that was holding the end of my cord down so tightly and sucking my brainstem and cerebellum into the spinal canal. To think that the doctorwho knows me better was filling in the other surgeon on how I was hurt, what happened and why, and that "horses were her life."

The following days are hard for me to pinpoint what happened when. At some point, I was rolled up to the neurosurgery "floor." My sister was there a lot. I think I remember one morning waking up and the room was dark and my sister was sitting there alone in the dark, waiting for me to wake up. That really touched me, although I probably couldn't express it.

As I wrote before, I had not seen my sister in six years, and it would have been nice to think of these days as a time to visit and catch up. But I don't remember any of that going on. I hardly remember her being there at all. She did bring me a Starbuck's latte that I requested. I remember it as delicious, but she tells me now that later, I complained about it being lousy.

In the bed next to me was a woman, but I have no recollection of what was wrong with her. I do remember on Thursday, which was Thanksgiving but I had no understanding of that, many members of her family came to help her celebrate the day. All I knew was that it was very noisy. Maybe they came on Wednesday too because it seemed they were there very late. But again, my perception of everything was skewed because I was using that pain pump as often as possible. It helped with the pain, but it also triggered hallucinations, crankiness and who knows what else.

That night, I heard intermittent clicking and I imagined that the woman next to me, her sons were playing with cap guns out in the hall. I pressed the button for the nurse and when she came, I angrily asked if there were boys in the hall with cap guns. She said no, then said, "Maybe it is the closing of the binders you are hearing." Later on, I noticed that in the middle of the night, the nurses must go through all the charts for all the patients, which are kept in binders. That sound happened every night and later on, in a more lucid state of mind, I noticed how they did sound like toy cap guns.

One night, I hallucinated that the TVs up on the wall were buffalo. Below them were two clocks which in the dark, became feed pans, one under each of the buffalo's noses. I imagined that I had to ready them for a fundraising auction.

On top of the closet to the left was a basket of flowers that my sister brought to me, with a mylar balloon with the words, "Get Well Soon." In the dark, these became the head of a Massai warrior, bedecked with feathers around his throat. I also imagined that I was not really at a hospital. I felt I was in a room that had been tacked on, shed-fashion, to the back of a factory where they were laundrying money. I feared this very much, that I wasn't really in a hospital, because that hallucination was very real to me.

Eventually, the med that was causing the visions and dreams was taken away from me. That was the last day my sister was going to be there. How I wish I could have those hours back and be able to really TALK to her, but I was in such a state that I couldn't. Or if I could, I don't remember it.

Speaking about not remembering...about the awake intubation, I found out later that they give you a drug that causes you to forget events during the time the drug is active, and thus I have no recollection of that process which I hear is very difficult and even terrorizing. It IS an odd sort of feeling though, to know your psyche and body went through something so terrifying as awake intubation...I HAD to be aware of it at the time, but I just don't remember it. It's strange to think about.

The morning after my rough night, a PA came in to assess my situation and noticed that my IV port was ripped off. He asked, "Who took that off?" and I said that I had. He asked why. I remember trying to think of something to say besides the truth, but in the end, just said, without apology, "I thought it was a bracelet and I wanted it off." He seemed to understand that it was all just a part of the hallucinations and did not scold me for ripping it out.

On Friday night, my sister bid me goodbye with tears and hugs. She had brought me a lot of snacks to leave there. I felt so alone with her gone. Yet I was so thankful that she chose, at the last minute, to come down to help me. I know now without a doubt that no one should go through a surgery and hospital stay without a clear-headed advocate to be with you. I hate to think how things would have gone if my sister had not been there. She truly saved my life and I will be forever thankful.

The day after she left, I was moved to a room up by the nurses' station. My mother tells me she talked to me on the phone and I told her that I was really hurting and needed the nurse, but no one was coming to help me. She said she hung up and called the nurses' station (my mom worked as a unit secretary at a nurses' station in her local hospital for many years) and asked why no one was helping her daughter. Way to go, Mom!

Monday, December 3, 2007

Dear readers, I'm back!!

Thank you all for your prayers, believe me, I needed each and every one of them!

Where do I start? It seems the wisest thing to do if I start at the beginning, even though the writer in me wants to avoid such cliched and over-used technique. However, starting at the beginning is just what I shall do, simply because it's easiest and I want to!

I left home very early, at 3 am on Nov. 18. I had one funny thing happen as I headed toward my gate. I approached the security area, loaded down with Aspen collar and cane, and removed my shoes and assorted accessories so that I could make it silently through the "arch." The TSA guy came up to me and said, "How are you today?" and I said cheerily, "Fine! How are you?" and he said (oddly), "Hey, I'm probably not doing any better than YOU are! I have my aches and pains."

I chuckled to myself and shook my head, wondering what brings such things forth. Did it sound good in his brain before he uttered the words? oh well....

I flew into LaGuardia with no problem, going through 2 changes of planes and guided along capably by wheelchair assistants. At LGA, waiting for my baggage to come gliding around on the turnstyle, I met the wonderful folks who offered to come pick me up. Matt and Becky, and along for company was Beth from Australia. Becky was heading into surgery the next morning to receive her fusion. I learned she is quite the horsewoman and loves them as much as I do, and her husband turned out to be one of my mainstays through my hospital experience.

They drove me straight to the Floral Park Motor Lodge, which I found to be very nice, inside and out. I was very glad to stay there and also, glad to meet "Grma Lee," the lovely member of our support group who was going to have her fusion done the same day as I would get my cord detethering.

I remember sleeping well that night, and the next morning, Grma Lee and I headed over to the hospital for presurgical testing, and then we took a cab over to our doctors' offices. I had a wonderful visit with my surgeon and came away feeling very confident that I was in excellent hands.

Nov. 20, Tuesday, was the day for my "Invasive Cervical Traction." My sister was driving down to be with me through the surgery and for a few days. Not having had the chance to be together in six years, I eagerly awaited the sound of her voice as I sat in the pre-surgical waiting room.

Imagine not seeing your sister for six years, and then you only get 30 minutes before you are taken off for the OR and traction! Still, we are so close in spirit that I felt much loved knowing she was there waiting for me.

Traction...well, for me, it wasn't that much fun. The patient is supposed to be put under anesthesia while the halo is affixed to the skull, but I came awake before the process was done. I can still remember the pain and pointing up to pin sites and crying for help and hearing, "We're almost done." In fact, that part "was" soon over and I was awake and not in too much discomfort when the doctors started the traction process. This is to test for craniocervical instability, and to prove if a craniocervical fusion would be beneficial.

The doctors kept putting on more weights until they reached 45 lbs. Most of the people I know felt a real relief of symptoms when the weight of their skull was lifted off of their Cspine and all the nerve tissue involved in that area. But I really didn't. And I had a massive amount of weight on the other end of the pulleys. I told the chief surgeon that I did not feel "Nirvana" but that I did feel "better."

The doctors conferred over the imaging on their screens while I sat upright with the halo apparatus still hooked to the 45 lbs. They used a CT machine during my traction, something new and I was told I was one of the first to have the CT during traction. Finally, the chief surgeon told me his deductions. They actually surprised me, as I learned something totally new about my condition.

He told me that when I fell from the horse and landed on my head, thereby breaking my C1 into four pieces, another thing also happened. My skull slid sideways somewhat off of my C1 and then, over time, it fused itself there. This is why the traction did not cause a Nirvana result for me, because my skull and C1 were fused together (in the wrong places) and not allowing "decompression" of nerves, even with 45 lbs. applied.

[I have done some internet research on this and I believe this must be called "Atlanto-occipital dislocation." The other words used for this occurrence are much scarier: "internal decapitation." I always knew I was blessed to be alive after the Jefferson Fracture I suffered, but this news showed another injury that very few survive! I read that 90% of people suffering the atlas/skull displacement die. Of the 10% who survive, 9% are paralyzed. I am beyond thankful!]

The surgeon continued, saying that I definitely have Tethered Cord because the MRI shows that I have an elongated brainstem, being pulled down into the spinal canal by the TC. And he said, "You do have part of your cerebellum descending into the spinal canal, about a 5.7 mm of descent from normal. You have a chiari but you do not have chiari."

I understood what he meant. That the TC had also pulled down my cerebellum, and that the tonsillar descension was due to that downward pull, not due to a small posterior fossa which is the landmark for Arnold Chiari Malformation. My tonsillar herniation was known to him as "a chiari" but did not signify that I "have chiari" or ACM.

He mentioned that these things probably are obstructing cerebral spinal fluid flow at my craniocervical junction and that the TC release surgery the next day will do me a world of good. But, he said, the fusion was something else. I do test positive for craniocervical instability, but because of the bone-fusing done by my body between the skull and C1, he was not sure how much the fusion would help. He told me they could not go into such an area and break where the fusing had been done.

He said that perhaps I would experience enough relief from the TC surgery alone that I would not want the fusion, but if I do choose to go back for the fusion, that I would see relief, but not the "Nirvana" that I might hope for.

When I heard these words uttered by so respected a surgeon, tears poured out of my eyes. Here I was, sitting with the halo and traction apparatus on, and rivers of tears flowed from both of my eyes. I wasn't sobbing or "crying," but the tears flowed forth anyway and they were NOT happy tears. The doctor removed the 45 lbs from the traction, and it felt just like he was putting 45 lbs onto the top of my head. I continued to cry as they wheeled me into ICU.

While I was in the traction, they sent a nurse out to get my sister to be with me and to experience the traction deal. However, they came back saying they couldn't find her. It turns out she was given the wrong "beeper"...and perhaps was indeed sitting right there in the waiting room waiting for me...but I guess it wasn't meant to be. When I get my pics developed, I'll insert one here.

In ICU, the tears continued to flow bigtime. I think this happened because of my brain injury and because it was all so overwhelming. They finally brought my Sis in, and that was the best! And I told her, "It's all just too much to take in."

I was supposed to be let out after ICT and spend the night in the motel, coming back to the hospital at 5:30 the next morning to be admitted for surgery. But, given my mental status, they admitted me then and I spent the night in ICU.

I will continue with the surgery story etc soon. Thanks for reading!