Monday, December 29, 2008

It is what it is...and faith

I haven't posted in a few days...not much to say. I'm getting weaker and weaker.

Now, I am starting to be concerned. At first, delighted that I would not be able to have the extraction fusion in order to stabilize my broken neck...thankful I would not have to deal with six months of halo...I wrote that I would be accepting of that.

But being accepting of the impossibility of having the surgery does not mean the problem goes away. And it's hard to not be concerned when things get worse.

Does true faith mean that I stop being concerned?
Does it mean I would not be trying to find answers?
That I would not notice increasing disability?

Or would God want me to keep trying to find help?
Would He want me to keep an eye on things? Try to find answers?

It seems like really honest faith would mean I'd let it all go, and trust that God has an answer
somewhere down the line. And that this is the way it's all meant to go.

I thought I had faith. I thought I had gone through tough times often in my life, and faith had gotten me through, and that I had learned faith through those events.

But if faith means that I do not notice increasing weakness and neurological, spinal cord pain; if it means I go on as if nothing is happening or wrong; if it means I do not seek something from doctors and just go ahead with a life on pain medications and experiencing decline then I'm not doing a very good job of it.

I have glimpses of that kind of faith, but, mostly, the pain keeps me beaten down. I have that strong "thing" deep inside of me that knows God has a plan and that He is in control. Without that, I couldn't survive. But closer to the surface there is concern, wishing it were not so, and a seeking for professional help.

A few days ago, I went to our shopping town 35 miles away to be with my husband and do some errands. I went in the first store, the hardware type, and after walking through it once, I asked my husband for the keys to the truck, I needed to go rest. I had my CTO vest on and my walking stick.

Next, to the Ink place for some printer ink refills. I got out and did this quick chore, then we went next to Bi Mart, a little membership store that suffices for WalMart, which is not close to us. I walked through that store and lost track of my husband. I walked across the store with the basket, looking down each aisle for a glimpse of him. This meant that I had to turn my head back straight forward to watch where I was going...walk 8 ft and look to the side again...look back straight and walk 8 ft, look to the side. About 15 rows and no sight of him, so I walked back across the store doing the same thing, very slowly and carefully turning my head. How stupid of me.

Next to Home Depot, but I stayed in the truck. Then to have lunch at Burgerville. I felt painfully weak and confused. Having something to eat helped.

Then, we drove home and all the way home, how I suffered. Just 30 minutes of driving. Once again, by the time we got home, I could barely make it out of the truck and into the house. Once inside, I peeled off the CTO and fell into bed and slept 90 minutes.

This happens every time I go to the shopping town. We used to go twice a week and it was always fun for us to do. Now, I hate going. My husband had to go there yesterday and I declined his invitation to join him, though I wanted to do it.

The world is shrinking and even the little tiny world is so painful, every day, day after day...a "good day" might have an hour in it when the pain has subsided. The medication I take, a small dose, as neurological patients go, of 5 doses a day with 5 mg each of isn't doing the job.

New symptoms evolve, old ones come back, existing ones intensify. No progress. Nothing to look at and say, "at least this is better," or "maybe this means I'm getting better!"

I'm thankfully happy in spirit with my life and my wonderful husband. In the midst of all this, I smile and laugh often.

Phone calls are so hard on me. I've written this before, but I just thought of something that adds into it. We have a small business or "paid hobby" and I get phone calls from prospective buyers. I must chat them up and if they make an order, it takes a lot of talking to get a custom order ironed out.

Then, if I need to talk to a vendor of some kind (this morning, it was Broderbund on the phone as I had downloaded - or tried to -- a Print Shop product and it doesn't work on my new computer which has Vista) and I get a nice, talkative gal on the line who wants to talk about her weather in Iowa and our weather out here and how she fell on the sidewalk over Christmas and how her mother is doing....

well, it all adds up! And I don't have the strength to visit with dear, loved ones like I want to. It doesn't seem right, but such is life. Not "right" sometimes. Right?

Well, this is one of those whining posts, but for me, it chronicles how things are going. Downhill.

It is what it is.

Tuesday, December 23, 2008

Christmas Past

I have so many memories of many, many Christmases past.

When I was young and growing up on a rural road, I was blessed to have girlfriends near my age who lived right up the road from me. Carol, Alice and Ginny. We all got into trouble as much as a group of boys!

One of the things we'd do each Christmas is stand in Carol and Alice's kitchen (they are sisters) and on the blackboard next to the phone, we'd write the lyrics out to "The Twelve Days of Christmas."

Then we'd random dial a phone number and when the person answered, we'd lay the phone down and start singing all the way through the song! At the end, one of us would pick up the phone and say, "How did you like that?"

Often, we'd hear the telltale buzz of the phone telling us the person had hung up long ago. But sometimes, people would be so pleased and excited and tell us how much they loved our phone-caroling. We all remember how one lady said, "Oh, could you sing that again so my husband can hear it!"

My father would always take me out driving on one or more evenings to see the Christmas decorations in town. I'd look forward to this so much, while we drove with my mother's stepmother ( Freda, who lived alone since Grandpa died) around the city streets, punctuating the warm air inside the old BelAir with "Oooohs" and "Aahhhs" and "Oh, look over there!"

All the neighboring children would always go caroling from house to house on that New Hampshire backroad. One of the older kids must have made up song sheets, and with mittens pinned to coat sleeves and toboggan caps with knitted balls on top, we trudged through the snow up to front doors, knocked and then stood back and began to sing and sing. We'd sing perhaps five songs at each house, and I'd guess we entertained at 15 or so houses!

I can recall, after presents were opened, running up the road with a big stuffed dog or truck-horsetrailer set to show Carol and Alice! They'd show me what they'd receive and we'd play on the floor with the new toys, the woodstove humming nearby while their mother, Martha, cooked a big dinner in the kitchen.

Do you recall those large, plastic faces of Santa that had a cord coming from behind them, and they would light up when plugged in? People would always have them on their houses, and our house was no different. I wonder if those can still be found.

In New Hampshire, it is tradition to put an electric candle on the windowsill in each window of the house, upstairs and down. Many of the houses were so big, colonial homes with many windows and I wondered who went from room to room twice each night, once to plug them in and once to unplug them before bed.

We'd usually go to my mother's father's home for Christmas dinner. When I grew up, dinner was the noon meal and supper was the evening meal. My parents were divorced, but Dad believed in tradition and so he still went up to Grampa's and Freda's for Thanksgiving and Christmas. After Grandpa died, I started dividing the day in half. The morning was spent with Dad, and the afternoon was spent with Mom and her family. It was hard for me to leave Dad alone on Christmas, I hated that part of it, even though I always looked forward to going up to Mom's and seeing what was left under the tree for me!

Oh, Christmas vacation for us kids! We loved to go sliding on Spofford Hill, up the road about a half a mile. We'd pull our steel runnered sleds up the road, with our ice skates' laces knotted and then looped over our necks. We had winter fun ahead that would last all day!

The hilly pasture, covered with deep snow, was wide and long and had a few dips and rises to it. We would slide and slide and slide ... we never called it sledding, we went "sliding." It was "our" hill, no other kids showed up to slide there. I'm not sure we ever asked permission to play there, but thankfully Mr. Spofford whose old farmhouse stood guard at the top of the hill, did not seem to mind.

When we were tired of climbing back up the hill after the red-faced rush of the pull of gravity, we'd tramp over to the little pond of water at the base of the hill. Someone brought a shovel, and we cleaned it off, slipped on our skates and whooshed around with each, girls and boys laughing so hard, getting along, icy cold toes inside tight skates and runny noses.

In certain winters, the conditions were just right for an activity not many could imagine. If we had a cold winter but little snow, the swamps around us would freeze solid, and we could skate for what felt like miles. In and out of trees and bushes, finding trails that looped through the woods, jumping over branches hanging over the ice. I didn't know then that not everyone has experienced such a thing.

One year, my Dad built from scratch a very large, very heavy double-runner sled. He worked for weeks in the garage and when he proudly pulled it out into the snowy driveway, I climbed up a snowbank and snapped a shot of the sled, with my dog, Chico, sitting on it, with my black and white Kodak.

At least once each winter, there'd be an ice storm, a dreaded condition for adults who must worry about power going out from downed lines and treacherous roads. But to us kids, in the school bus with Mr. Kirby at the helm, ice storms held one delicious facet: when the iced birches were bending down over the road, loaded down with crystals from the night before, the bus would approach them and Mr. Kirby would call out, "Get ready!"

We knew what it meant, that he'd crash through the birches and the loud clatter on the steel, uninsulated roof of the bus was thunderous! We'd all duck and scream joyously in our seats, relishing the adrenaline rush of safe danger.

more Christmas memories tomorrow, I hope.

Tuesday, December 16, 2008

Things going well...

I am really doing pretty well these days. Perhaps it is because I'm taking a good pain med at night now that seems to be helping a lot. Perhaps it is because I feel a heavy load lifted from my weary shoulders, that shadow that haunted me, the fusion surgery.

What changed everything for me was receiving the written report from the doctor who evaluated my bone scan. He said that I lost 8% of my bone mass in less than a year. He also wrote that I am "significantly worse."

It's all out out of my control, and I just can't be having the surgery any time soon. In fact, in contrast to my last post, I am not pushing now to figure out a way to have the surgery. I've let go, and am going to "let God," as they say. I now am accepting who I am, and what I can do...and what I can't. And instead of wishing for better days, right now, I'm able to be in the moment and enjoy those moments as they come.

Today, we drove 55 miles to the town where my husband had an appointment. The snow-covered hills against a bright blue sky were entrancing. I noticed deer trails criss-crossing already the tree-less side hills. Bound up in my CTO, I kept working with the heater and defroster in order to keep the windshield and windows clear in our little truck. It was about 2 degrees this AM.

By the time we got to the appointment, I was feeling horrid from the painful head-sleep of the CTO. But inside, I had such a pleasant visit in the lobby, while waiting, with a couple of local, elderly men, who told me hunting stories, and the one man, now retired from firefighting, has played Santa in the community for 48 years! This year, he was 2 weeks past surgery and using a walker, but he still climbed up onto the fire engine for the parade through town the night after Thanksgiving.

At Walmart, I went in with my CTO and my walking stick, and for the first time, I was just happy being me. What I look like, well, I know it's comical. Especially with the knitted, snow hat on over the wide body of the cranial helmet of the CTO. But that was okay. I'm just me...and it ain't gonna change.

Years ago, I learned a saying: If you don't like your situation, change it. If you can't change it, change your attitude about it.

Well, I spent over 4 years trying to change it. Now, God has changed my attitude. It's a beautiful thing, because I know I don't have the strength or power or will to change my attitude. That is a God-thang.

Dr. Fu's office is proceeding with putting in a recommendation to work comp that I be seen by the endocrinologist in Portland. If it happens, I'll go. I do need to find out how to stop this bone loss. But even if he took new tests and found me ready for the fusion/hardware surgery, I am pretty sure I would not go for the surgery.

I'm not ready to risk it. I've read too many stories of fusion failures, especially from those with osteoporosis. And when it fails, it's a very bad thing. They will go in and take the hardware out, if necessary, but that definitely means a permanent halo.

I gave up my dreams to fly up to Alaska, to drive to Vancouver, BC, to even ever drive again myself. I gave up the plan of getting a travel trailer and going back down to NM to see old stompin' grounds. I'll never get a mini horse or two and train them for the county fair. I won't be able to go to National Cowboy Gathering in Elko, NV to sell spurs with my husband. I won't be hiking through the woods across the road. I will have to get help with my gardening next year.

If I get so sick and pained after riding 35 miles in a nice car, I can't take trips, not even short day trips.

So, I'm going to be happy in my home, with my wonderful husband and best friend. And let go and let God.

Friday, December 12, 2008

The Day After

So the journey never ends, even when you think you've written the ending.

This morning, I woke up with the strong feeling that this is not the end. Not yet. Maybe this is what God wants, for me not to have the fusion. But I'm not getting that signal yet. So, until then, I will keep on pushing toward the goal.

I wrote up a letter and faxed it to Dr. Fu. I told him how the bone scan technician had been mean and rude to me, and perhaps she had diverted herself from inputting information into the program or setting up the scan machine, or who knows? I also told him that I'd learned that a scan can be done of the forearm to get additional, bone mass readings.

I knew this because I received, last night, a helpful email from an online friend who lives east of Portland, OR. She is also a TCI patient, and she told me that she had wasted lots of time taking drugs that did not help, and then she went to a Dr. Dana Madison of OHSU (Oregon Health and Science Univ.). He put her on Forteo shots for six months, he communicated with Dr. B in NY and he scanned her forearm. She was well enough for the surgery, which she had not too long ago.

The phone rang and it was Dr. Fu. He is remarkable! He talked with me, looked again at the bone scan I had recently, compared it to the last one I'd had, and felt that the mean technician probably didn't change anything, and that there was no reason to do it over. He had looked up the neurosurgeon for a spinal injury center who actually comes once a week to a town 35 miles from me, and he is going to refer me to him. Dr. Belza.

I told him about Dr. Madison and he was interested right away. He is going to call Dr. Madison and tell him about my situation. I feel so good about this, that I wasn't just given up on, that others are fighting for me, too.

Dr. Fu said, "We didn't get the results we wanted, but I really want to help you."

So, I'm back on the wheel again, nothing has really stopped yet. Maybe we'll find something new, and at the same time, Dr. Fu will learn something to use with his cancer patients.

Thanks for your responses, I appreciate those who care so much, more than I can say.

Thank God.

Thursday, December 11, 2008

I'm crushed

Dr Fu called this morning, and my bones are actually worse than they were a year ago. After 18 months of IV pamidronate treatments. Actonel every week for five years. I am in tears.

I was so counting on having the fusion, getting the weight of my head up off my spine and brainstem. Having a life again. I had so many high hopes. You have to have that when you are prepping yourself for a surgery like this fusion surgery is. You have to build it up as a savior of some kind, you have to see brighter futures down the road which includes immeasurable pain.

My husband and I planned on getting a camper, putting a hitch on the car, traveling all over, flying up to Alaska to see it for the first time. I pushed those hopes ahead, post-surgery, post-halo. For me and now for him, it won't happen because I can hardly stand riding in the car to town and back, one mile away. My condition is holding him back, his happy retirement back.

I can't fly down to see my son, I will have to rely upon him taking the time to come see us. I had such plans...

I'm afraid if my head keeps settling, I will be in a halo for life.

I look to the Lord for my help for vain is the help of man. Oh, boy, do I know that one! Vain is the help of man. The first neurosurgeon who should have put me in traction and into a halo, who gave me "less than the minimum standard of care. Who sent me home with a small, flexible collar and made me take that off in six weeks. His "help" was certainly vain, and so far, no human has helped me to get this fixed yet.

I know the Lord has a plan. I survive on that thought.

And I prayed to him several times that if I am not supposed to get the fusion, if the fusion would fail and cause me to be worse, please let it never start...let Dr. Fu say that "no surgery."

I should be rejoicing, but I am grieving, tempered with the knowledge that God answered my prayers.

Dr. Fu said no more pamidronate because it is not working, that he would have work comp approve Avista for me, a daily pill, and perhaps Forteo, daily shots. He would also refer me to a spinal cord injury center.

In time, I will grasp this and be fine with it, but right now, tears course down my cheeks. I knew today would be momentous, it would either mean "go" or "no." But I never expected a "no." I had that whole Tethered Cord surgery in preparation for a fusion I'll never have! I'm much worse off in below the waist symptoms since the TC surgery a year ago. I'm confused and grieving and yes, worried about my future.

Lots of new symptoms started up in the last few months. And I turned my head a certain way a couple of months ago, felt a clunk, and have had a lot more occipital pain and symptoms since then.


For me and so many others, when will it end? Oh Lord, when will it end.

I'm sorry, dear readers, some of you (well, one of you) gets so upset when I show my honest face here, and I'm so sorry to cause you heartache too. I wanted so badly to come here with a happy post, I'm on my way to "better."

Quite possibly for me, better comes when I cross over.

Tuesday, December 9, 2008

Saturday, we drove to our bigger town to do a small bit of Christmas shopping.

The sky punctuated by gilded, rugged clouds, the river down below hemmed by basalt
cliffs which all fed my soul as I realised how long it had been since I'd been "out."

A week.

The Columbia Hills are greening with tiny blades of grass that will soon be "comfortered" by a
blanket of snow. Cattle nibbled on old scrub and fresh delights, and I dined on the sights.

We went to one small store, a discount membership store we shop at a lot, and I got lost
in scanning each aisle, thinking specifically of the people on my mental list, their likes and
dislikes, what I know of them and mourning the things I don't know.

Gift giving does not take us away from the true meaning of Christmas. In a way, it puts us into a mode of dwelling on the hearts of loved ones, if we allow those gentle nudgings.

Next, we parked in the handicapped spot in front of the discount grocery outlet and walked through for a few items. I reveled in the visual feel of the checker placing my items into the cloth, reusable bags I brought in for my carry-outs.

We stopped for a casual lunch, amiably visiting over french fries and turkey sandwiches and milkshakes.

Lastly, to the hardware store. I elect to go inside with my husband, to experience the sights,
the sounds of Sawyer's True Value and their chosen decorations of the season. While Pete
browsed through tools and accessories, in my Johnson CTO I went up and down aisles looking for sales on discontinued items.

Ah, the "Christmas lights and decorations" aisle. My viewpoint may have been reined in like a work horse in blinders, but I was determined to experience the joy of the glitter and the fascination with the sparkle.

As I rounded the corner, I saw four big kids in the aisle which caught my attention.

And I stopped and drifted over to look at something else. I was finely aware of how I looked in the big brace, and I just didn't have the strength or courage at that moment to endure questioning looks. I didn't have the energy to smile and take away their embarrassment, their discomfort. Doing so can be such a job sometimes.

My feet started zinging, the strength drained away in waves, the profound bone-pain swelled through me. I found my husband and asked for the keys to the car. I couldn't get out there fast enough to hide in the car away from looks, inquisitive, sympathetic or otherwise.

Previously, I had readjusted the straps on my CTO, thinking perhaps they were holding me a nano of a millimeter in the wrong spot, causing the dreaded pulling-down into painful neuro-sleep. But the ride home proved things were still all wrong and by the time I got there, I struggled out of the passenger side of the car to open the gate, weakly climbed the small hill up to the house. I feebly unsnapped the four clasps that hold the CTO on, as well as the wide velcro'd band around my forehead and sloughed off the brace like a snake weary of dragging around his old skin.

Stumbling down the hall to the guest room, I carefully slid into bed and slept 90 minutes, a scenario played out every time these days that I go to our shopping town.

The world narrows, the aperture tightens.

I'm as good once as I ever was...

...but what if you're not.

And how hard does the curtain crash down when you finally get the message: you are not a part of a world you once dwelled in. The show is over, at least for you. You've already taken the final bow and didn't even know it at the time.

Just how hard does that curtain fall? Does the thick, luxurious velvet even make a sound? Did anyone else notice it?

It's one of those things we don't like to talk about. We say we treasure honesty and baring of the soul, but when it hurts too much, we change the channel. I know I do. I can't do anything about Somalia so I better not think about it too much. Ah, there's "What Not to Wear!"


It is not an overt thing on the part of that circle of friends that went on spinning while I had to step off for awhile. It wasn't something of which they were aware, their thoughts or actions were never intentional.

No, I have learned it goes far deeper than that, an achingly slow evolution of inclusion or exclusion, of thoughts, of heart, of desires to even be with me, such things that dwell in the folds of the curtain backstage and of which most, if not all, are unaware.

So, off that planet whirls into the horizon and I remain behind, treading water, and looking for the path that will lead me to satisfaction and fulfillment in a different land which lay before me the moment a big, Paint horse stopped in his tracks and I tilted forward over the saddle.

Monday, December 1, 2008

On Runnin' Out

So now I know.

I know how badly I need surgery.

I know 2 Tylenol don't help the pain.

I know 3 Advil don't help either.

I know another prescribed pain medication, taken in a double dose, doesn't touch it.

What I didn't know.

I didn't know that my doctor was going to be away from Wednesday night last week until Tuesday morning this week.

I didn't know that I was going to be running a few days short on my pain med of choice, oxycodone.

I didn't know, when the clinic called on Wednesday to ask if I'd mind pushing my doctor appointment out one day, from Monday to Tuesday, that I'd be out of my medication. I readily agreed because, hey, I'm agreeable.

I didn't know, when I faxed my request on Friday for a few pills to get me through until I see my doctor, that no one was in the whole clinic to see it.

I didn't know just how bad the pain was, or how well the oxy was taking care of it.

So, it has been one heck of a last 36 hours, and I have 14 or so more hours to go.

I also know that I would not really be having withdrawals at least at this point in no pain med that I'm used to. That particular delight has not hit me at all: no buzzy head, loss of balance, dizzy, etc.

just pain. I am not going through withdrawals, I'm just hurting in all the places that the oxy was helping, even if only a little bit.

Today, I called twice to the clinic to see if they had some pills to get me through until I see my doc tomorrow morning ( and then somehow get the 35 miles to the pharmacy). Finally, at 4 pm they called. I was in bed with four ice gel paks under me, dark room, trying to survive. They said they would not give the meds to my husband, so I got up and rode with him down to the clinic.

Once there, I find they are giving me a script for 5 pills! I can't get to the pharmacy that late and as bad as I feel. We just drove home with a piece of paper.

I'll make it though. I'll cowboy up. And tough it out.

Speaking of "cowboy up," tonight I watched "8 Seconds" on TV, the first time I'd seen it. When it first came out, I wanted so badly to see it, but we were way out in the middle of nowhere on a ranch, and movie theaters were a faint memory. I'd heard of Lane Frost's death after he rode the bull, Redrock, at Cheyenne. The movie is his story.

I was so surprised at the great acting in the movie, even Stephen Baldwin starring as Tuff Hedeman. Luke Perry played the role of Lane. The movie kept me riveted for two hours, and completely took my mind off my central pain. But I cried so much at the end. Even though I knew the ending, the movie was just too real. And all the shots of the real Lane Frost at the end, about ten minutes of photographs and riding clips.

So, anyway, now I know. I hope this never happens again, this running out of meds. It's been pretty darn rugged.