Tuesday, January 26, 2010

24 hours later...

What a difference a day makes.

Yesterday, posting that I am now accepting of my situation...then, today, feeling so badly that I am to the point where I have to do something!

I admit it, I'm a sucker for illustrative stories. Here's another that hearkens back to the early 1990's when we were managing a ranch in north-central Washington.

Down the lonely road from our old, decrepit farm house was a nondescript cabin, nestled near the creek. This was the employee housing for our one ranch hand, Bob. Living with Bob was his girlfriend, Judy...they both looked to be in their 40's.

Bob never showed up to work without Judy, even in the middle of the night when they'd come in the winter to check through the calving cows. She was not on the payroll, and I loved ranch work as much as the next person, but I also loved having a chance to stay home once in a while and get caught up on the laundry and housekeeping, too.

Judy never got that opportunity and I noticed it. I had times that offered me the chance to visit with her and get to know her, and she revealed that Bob beat her often. He always brought her with him to work because he was insanely jealous and feared she would leave or tell someone about their situation.

I wasn't sure what to do. I didn't want to put her in harm's way. Never having been in that situation before, I didn't know how to handle it and neither did my husband. We decided to wait and watch. And told her we'd help her if she ever decided to leave Bob.

One time I visited her and she showed me big bruises on her arms.

I asked her, "What is your limit, Judy?"

With knitted brow, she asked me what I meant.

"I mean, what is it going to take for you to leave him? To call the police? Right now, he's shoving you around and hitting you. You must have in your mind what would be the last straw. Is it when he breaks your arm? When he threatens your life? I'm just honestly wondering what it is."

A week or so later, I looked down the county road and saw police cars parked up on the road above the cabin, lights swirling blue patterns on the aspen trees. Before we could go down there to find out what had happened, one of the patrol cars drove up into our yard, with Judy in the back seat. The officer got out and explained that Judy had asked him to bring her up to our house. She knew she could stay with us for safety and until she got things figured out.

After the cop left, Judy explained that that afternoon, Bob went into a rage and pulled a knife on her. She told me that my words came back to her mind, and she thought, "Okay, this is it! This is the point where I say no more!" And she called the police.

Bob went to jail, and Judy did some work for us on the ranch until she had some money to go back to her home and family in the eastern part of the state. Bob had purposely pocketed what little money they had when he knew the police were coming, leaving her nothing.

I thought of this story as I laid achingly in bed today.
I was too weak to get dressed....again.
I didn't step out the door once.
I was so weak, I could hardly walk the length of the house, and it was very painful to even do so.
I just wanted to stay in bed, but the pain meds were not helping and it hurt to be there.
I suffered through the day.

And I thought, "This is it. This is the point where I have to start fighting again. Maybe I could have lived the way things were a few weeks ago, but this is ridiculous!"

So, in order to feel better by just doing something, anything, I faxed a note to my attorney, asking him to request an emergency authorization for the SPECT scan that my new neurosurgeon had ordered back in November. The attorney had told me on the phone that work comp would not make that decision and it would be left to the judge at the hearing that is scheduled for Feb. 8. I told him I did not want to wait 3 more weeks.

It just made me feel like I had done something proactive.

We all have a limit. Today, I felt I'd found mine.

Monday, January 25, 2010

The Way things are

Another twenty days since I've posted.

My weakness seems to be increasing. I haven't gotten dressed out of jammies in two days and today's not looking too good either!

The reason is that I do some things in the house, light things, while I have any strength at all. When I am done those things, I have no strength to get dressed. I do try to keep clean, though, ha!

Doing the laundry, making the bed, folding and straightening and answering a few emails, it all adds up and my "spoons" are gone.

If you've never read the "spoon theory," I hope you do now. It really helps others to understand, I think, what people with neurological problems go through. Here is the link:

(I think I'll copy/paste it onto a post here, as well)

And I seem to have less and less spoons, lately.

Chronic pain continues. I deal daily with my pain medications. I am sure so many readers can relate to this! I am allotted by my PCP only 5-5mg oxycodone a day. He will not prescribe more for me. He wants me to go to pain managment, which I would be willing to do, but it is 77 miles away, one way.

This amount of medication is not taking care of the pain at all. I've tried adding in ibuprofen and acetomeniphen but they don't help central (spinal cord) pain at all. I guess I will have to succumb and make the trip to pain management, but really don't like the thought of that long trip once a month. Maybe with enough meds, it won't be that bad, and it will be worth it.

I have noticed that my goals and hope for the future have changed.

I'm sure this is due to this long journey I've been on for the last "almost" six years. Some of my readers have been with me since "day one!" They, most of all, know what I mean. It's been a long haul.

I do not believe I will ever be offered surgery to stabilize my head and neck. I have come to not expect a "fix" for this challenge I have.

This is what is known, in the "six stages of grief," as the last stage, that is, "acceptance." I accept what I have, it is what it is, and every day is going to be just about the same as the last, only maybe worse in terms of pain. It's NOT defeatism, and it's not "losing hope." It's more about being realistic, learning lessons, and a sense deep inside of me.

Perhaps this is when I finally "let go and let God." Or maybe, God doesn't have a cure in mind for me. There are so many people we all know who do not get the cures, do not get the fixes, and die with the hand they were dealt. When our faith is strong, we accept things and know that they happen for the glory of God.

"How can that be?" I can hear an unbeliever thinking. "How can suffering be a good thing?"

Someone with a deep understanding of God and Jesus and things eternal knows that the main thing of importance on this earth and in Heaven is that "all should come to know Jesus Christ in a personal saving way." That all should come to Him who will.

And most people come to Him by observing the living testimony of His children.

Thus, someone suffering in pain or other disabilities, if they do so in grace, God's grace, and they give the glory to Him, the unbeliever sees that, day in and day out, year in and year out, and thus their heart tells them, "God is in [that person], of a truth!"

They see God as real, the Gospel as true, Jesus as the answer, because of how we live and show others. It's not a fake, "show" thing...it's not a performance...it's a truth-thing. If it's real.

It's not something we can cause. It's something bestowed.

An experience I had back in the mid-90's now comes to mind. Driving over a mountain pass alone, one that was snowy and icy and had several, dangerous switchbacks, I carefully watched the road and kept a steady pace.

Near the top of the pass, I noticed a pair of tire tracks that ran off the steep edge beside the road, through the snow bank caused by the snow-plows the night before. No guardrails. Just off into thin air. The slope on the other side so steep, I could not see the bottom or the car below.

I slowed carefully and pulled off the side of the road where it was safe to do so. I set the parking brake and got out of the car, walking to the edge and peering over, afraid of what I'd see.

The terrain was almost completely vertical. At the bottom, perhaps 150 ft. below, was an older, Chevy Blazer. I feared anyone in that car HAD to be dead.

Some men had also pulled over by this time, and were out of their pickups. One of them found a long rope behind his truck seat, and tied it off to the base of a pine, using it to steady himself so that he could get down to where the car was. That is how steep the hill was, one could not simply walk down there.

The Blazer was so damaged by the many rolls it had taken that its doors were battered and would not open. The rescuer below had to kick in the windshield to get the occupants out. But, amazingly, they were all alive and were able to use that rope and other men pushing and pulling them to get up to the top where I stood.

"They" were a set of grandparents, elderly folks, with a 3 year old grandson. The shaky old man also was on oxygen and carried his oxy bottle, the tube feeding precious life into his nose, as he crawled up the hill.

I took the boy into my Izuzu Rodeo and put bandaids from my emergency kit onto his many little cuts, and basically soothed him and held him because he was very shook up. Soon, an ambulance showed up. The grandparents asked me to call the mother of the little boy to let her know that they would all be at the hospital. I did so.

When she answered the phone, I told her first, "You don't know me. And first thing I want you to know is that everyone is alright! Everyone is really fine. But, an accident has occurred up on Seven Devils at Loup Loup Pass. The ambulance is taking your parents and your son to the hospital in Okanogan. You need to meet them there."

The fearful, little boy didn't want to leave me, I had become something of an anchor in his storm. He reached out to me and cried as the EMTs took him into the ambulance, and my heart broke. I offered to ride in there with him, but they told me that would be against the rules. I'm sure he was in good hands and everything worked out fine.

I tell this story because it changed something in me, something I think about every time I get into a car.

How did these people survive? They said the Blazer rolled three times going down that hill before it was stopped by a tree. Yet, although they were weak, sick, elderly, very young, battered and bruised, they were able to crawl up a rocky, steep cliff-face to safety, in the snow, one of them carrying an oxy bottle!

They had each been kled in safely in their seat belts!

This was back in about 1995, and I was not yet one of those who was wearing a seat belt every time I got into the car. In fact, I never wore one. We were working on a ranch, as ever, and ranchers and cowboys just didn't use seat belts then. We had to get out and open barbed wire gates too often.

But this spectacle, the one where the Blazer went off the cliff, it changed all of that for me. I began buckling up every single time I got into a vehicle and, of course, have remained that way ever since.

You see, the fact that these people survived in good condition BECAUSE they had been wearing seat belts made more of an impact on me than if they had all died because they had NOT been wearing them. Do you know what I mean? I believe this all made a much stronger statement, than if I had found them all dead and the reports came out that none of them had been buckled up. Yes, the police might have said that the family would have probably survived IF they'd been in their seat belts, but that would have just been a big "IF" to me. But, to see them in such good shape after a wreck that I would have thought no one could have survived, it simply had to be attributed to God and those seat belts!

Anyway, it made an impression on me.

And I can use this story as a metaphor for what I was trying to say far above. God can use us to speak to people and cause them to do something to save their lives for eternity, if we allow Him to do so. It's not something we can fake. It is something that comes from God and lasts for ever and ever, never failing. And people who observe us can see this in our lives. And they know that He, our precious "Seat Belt," is the reason we survive with grace no matter what the world throws at us.

Maybe I won't have strength to get dressed again today. But that's okay. He gave me strength enough to write this so that you can read it. And that's good enough.

PS, having written all that I have, especially at the beginning of this missive, I want to also add something very important.

I may be in the midst of this constant pain, I may be getting weaker, I may have lost sight of any sort of surgical fix, but I want you all to know that I AM very happy. I am happy in Him, in my humble home and spot in this world, and in my partner and husband of 36 years. God has blessed me far beyond my dreams, and there is much each day that makes me smile. How I thank Him for it! God bless each of you!

Tuesday, January 5, 2010

Testing still on hold

Just a note in case some faithful readers are wondering about my SPECT scan and new lumbar MRI.

I am still awaiting work comp authorization. The order from the doctor is dated Nov. 20, 2009. Such a long wait. I still think this SPECT scan could be very helpful.

Over the river...

I crossed over the big bridge at The Dalles, OR yesterday, noticing the dam seemed to be shut, allowing the level of the river below the dam to be lower than usual and the rocks showing where they usually are not. Several rickety fishing platforms built by local Indians are situated below the dam, and a few old sheds with signs of "dried salmon" for sale adorn the roadsides.

I went to see my oncologist, Dr. Fu. He is my favorite doctor.

As I've mentioned before here, I have something called MGUS. Doctors call it like this: M...Gus (like the cowboy in Lonesome Dove). It stands for Monoclonal Gammopathy of Undetermined Significance. This means it doesn't have any significance if it never evolves into Mulitple Myeloma. A very serious bone cancer. But, I guess if it does evolve, then it IS considered significant, huh?

I am in a pattern of being monitored twice a year. Once a year, I have all the blood labwork, which is what I had recently. Then, six months later, I do a 24-hour urine test. And both times, I have a consult with the fabulous Dr. Fu.

It occurred to me yesterday that perhaps this MGUS stuff is more important than I'd been giving it credit it for, focusing as I have been on my broken neck and cranial settling etc. I mean, if I am to be tested twice a year for the rest of my life, this is "something." But, knowing I'm being tested that often gives me great faith that if this were to ever evolve to MM (which I have a 25% chance, statistically, that it will), we'd catch it early on and treatment would be very effective. AND, I have Dr. Fu. He'll take care of me.

I figured my appointment would only last five minutes. That he'd say the tests look fine, how are you, goodbye. But we visited for 45 minutes. He told me that the bloodwork looked fine, and he did not have the actual MGUS test back yet, and that if there was anything of concern when it does come back, he will call me. I know he will. I know he won't forget me. He's a very good doctor.

He opened the door and about rushed across the little examining room to give me a hug. And most of the time, we talked about my neck and surgery and he advised me to try to live without surgery as long as I could. He didn't seem very positive about good results from a surgery.

When it was time to leave, he hugged me again. Reminded me to take my walking stick with me, which I was almost forgetting, and I teased him, knowing he collects walking sticks, telling him I have to watch him closely or he'll steal it.

As we walked down the hallway and I was leaving, he said, "You are now past the point of making things happen. You are now at the point where you are making something good of what is."

I liked his observation.

I also do not have the strength anymore to "make things happen."

The Alone Zone

Sometimes, I think I have changed a lot, but then I look at things around me and realize that I might be a lot the same and my days and surroundings all still reflect the me I used to be.

The me I used to be.

One thing I pondered recently is that my house satisfies the artist in me.

The artist in me.

I used to write and perform and train horses and play music and do many creative things. Now, most of those things are gone. But the Lord has given me a house that serves as a blank canvas. How I enjoy doing little things in this place where I spend so many days and hours, day after day, within its walls.

I remember how, when I was healthy, there was not a single day that I did not go outside, take care of the horses in the barn, and other animals. Now, I can go days without stepping outside. And a week can go by without leaving the yard.

This house, a manufactured home, was all white walls and white trim and white doors and ceilings when we moved in. Over the last three years, we have been doing little by little to change some of this. As I've mentioned before, we are "going for" a lodge-type feel to our house. Not a big fancy resort lodge, but a small, lakeside camp would better describe our taste. We have some mounted deer antlers on the walls, artwork that reflects mountains and lakes and trees, all which work well with our horsey/cowboy art that we have collected over our lifetime of working on western ranches.

I have been painting the doors and it's been very fulfilling. To me, each door is a work of art. They are a poly-type material with four recessed panels in each door, each side, and a nice wood-grain throughout. I paint the doors and panels until they look antiqued and aged then I step back and feel like I've just created a piece of art on a canvas. It's very rewarding.

And I'm alone as I paint. I'm in my "Alone Zone." Mouth closed, concentration on the colors and avoiding places I don't want to paint, I know this is a good place for a brain to be.

I've always known that a brain needs those times when we just "zone out" and don't think much, just live in that very moment. It's restful and cleansing for the brain. Riding horseback down long trails or brushing horses in the corral, I had hours each day of my life in this sort of activity. Cleaning corrals with manure fork and wheelbarrow; working in an arena to create the balanced trot I was "feeling for;" gardening and much more, pretty much all of my work life has been spent in the Alone Zone. I've loved every minute of it.

My progress is exceedingly slow. It takes me a couple of weeks to finish both sides of one door. I can only work on them for about an hour or two a day, but then I can't do it every day because I pay the price bigtime for doing it. But it's my choice to do it and I'll do it if I want!

I counted 14 doors, inside, in our house, including closets. I have painted, so far, one side of 5 different doors. It has taken me almost 3 years. I can easily see many years ahead that there is plenty of resting-brainwork for me to do here. I don't mind.

I have been feeling pretty badly lately, even though my days are very slow going and I get times of rest and napping each day. My oncologist asked me yesterday if I could see obvious decline, neurologically, and I said absolutely yes. Just walking a block looks monumental to me lately.

I have many, many thoughts to blog about, but being at the computer has become harder and harder. I had my narrow mind focused on the reason as being only my head position while looking at the monitor. Then, it dawned on me yesterday that it's not that as much as it is the movement of my arms and fingers at the keyboard. As you, dear reader, type, you might take notice of how much arm movement is going on. I'm pretty docile as I type, but I can see my elbows and arms flying about, and I know that it all travels right up my arms right to my skull base. Voila!

So, yes, I'm still horribly far behind on emails. I'm getting used to it and not letting it bother me so much any more.