Thursday, November 27, 2008

Bone on to the next thing

Up early waiting for the pain to subside. It's Thanksgiving. It will be just the two of us, as usual, minus our son who is married and 900 miles away. I'm sure his holiday will be happy and filled with laughing family, that they will be with his wife's family who live close. This gives us much to be thankful for. A happy child. And so much more.

Yesterday was the bone density test. It was quite strange, how it went, due to a snarky technician.

As we drove the 35 miles through very dense fog that morning, I suffered silently in so much pain. Deep, central nerve pain throughout my body, especially in my hips and legs. I had taken a pain pill at 6:30 am, and at 8, while on the drive, I took a 2nd one, since the first was not working. As I struggled out of the car at the "bone scan place," I was hurting so badly, and the weakness was profound.

I was the first one in to be tested that day, and never saw another patient in there while I was there. I chatted with the woman at the desk, who was quite nice. And we happened to visit about how nice people were, in general, in the northwest and this area in particular.

I was called back by a middle-aged, blond woman and asked to remove my shoes, place my things on a chair and stand to be weighed. I've not gained a pound in a year, very thankful for that. With the ebbing ability to do much of anything at all, I work each day to eat healthy, cook healthier. The hoped-for payback would be weight loss, but I've chosen to find victories where they hide.

Then I was shown into the room for the scan, and asked to sit on the table. The woman (she never told me her name and I didn't see a name tag) at first could not find me in her system on the computer but I assured her I'd been there before.

She found my name, clicked on it, and immediately turned to me and said, "I won't do this scan today."

Of course, I asked why, and Nameless said, "It hasn't been a year since your last scan. Your insurance will NOT pay for this."

I opened my mouth to explain, but Nameless sniped, "You will have to pay for this yourself. You have to know that. I won't do this scan today."

Again, I tried to tell her that this is a pre-surgical test, but she interrupted me again. To me, it felt like she was cramming my words right back into my mouth.

I asked, "How much are these scans?"
"One hundred and eighty five or more. They've gone up."
"Okay, I'll pay for it."
"But you have to see that you will not be reimbursed! Insurance demands that bone scans are taken at least a year apart, and most insurance requirements are two years."

I said, "This is workers' comp."
"Work comp is worse!" came the return volley.

Certain that I was talking into the wind without my words reaching her brain, I kept trying to gently break through that wall of "know-it-allism" while Nameless avoided my eyes while looking right into them.

Each time, she headed me off at the pass without a bit of caring for my situation. I could not help it, I started to cry. She did not recognize it however, did not hand me the kleenex box on the counter behind her, even when I pulled a rough, paper hand towel from the dispenser to blow my nose.

Finally, thinking that I could break through to her, I sobbed, "With the brace off, everything crushes down and it's hard for me to handle this and I'd like a little sympathy from you about it."

("Sympathy" was the wrong word for me to use, but it is what came to my brain. I would have said "understanding." Sympathy really demotes you to a woman like this.) And it was so odd, because she had such a controlled way of talking, same decible level, so unemotional. She was a Stealth Snark, the worst kind.

Each time, over and over, I tried to tell her it was okay, this was a different situation, I wasn't just having a bone scan for a lark. Once, she snipped, "Okay, enough of this. I don't have time for this, I'm busy. I'll do the scan but you have to be aware that insurance will not pay for it."

I said I was aware.

She said, "Dr Fu would never order this scan now, he'd know your insurance would not pay for it."

To me, it was if, with this statement, I was on the defense stand. She felt I was lying about Dr Fu, even though Dr. Fu wrote the order and his secretary made the appointment for me.

I replied, through tears, "I was just in his office last week! He DID order this test. I need this test and the results in order to move ahead with a surgery I really need immediately!"

Nameless Stealth Snark couldn't have cared less. "Dr. Fu would not have ordered this test in normal situations."

"Yes, that is what I'm trying to tell you! This is not normal."

With a cloud of dismissiveness around her, NSS looked at the screen and said, "All I need is to hear that you were told by me that your insurance will not pay for this and you have to pay for it yourself, and then we'll do the scan."

"I told you I understood ten minutes ago!" I sobbed.

We proceeded with the painless scan, a test I've had several times and had expected to proceed easily. I dabbed at my nose with the paper towel while she put foam blocks under my knees and instructed me on how to place my legs and so forth. I held it all in, the only sign of my emotional pain seeped out of my eyes while I silently coached myself not to cry.

You know what? When I got up from the table, I apologized to HER. I guess, instinctively, I know what I need to survive, and I did not need to walk out of there mad, things unresolved. I wasn't going to be teaching her any lessons. She was probably about 50 and had many years behind her, learning her behavior. I apologized for my own good.

And she said she was sorry. But it was insincere.

As I walked down the hall and toward the safety of my loving husband waiting in the parked car outside, there was not another soul in the office waiting for a bone scan.

She said that Dr. Fu would not get the scan and evaluation until the middle of next week. And she said that if I would call in TCI's fax number, she would fax the scan immediately to Dr. B. I thanked her profusely and left.

Tuesday, November 25, 2008

rejection, good day, bad morning

I just woke up with pain so bad that it played a starring role in the dream I was having.

I was young, vibrant, strong and healthy. I worked on a dude string, and I couldn't saddle a small pony because of the horrific pain and weakness I was experiencing.

When I awakened, the pain was so intense, below the waist and all the way down to my feet. I stumbled into the kitchen and took one oxycodone, walked away and then turned back and took another. I had to hit this one where it hurt, literally.

Why? Something like this is always caused by activity. It must have been that long mountain trail ride I went on yesterday, oh, how glorious with the surrounding peaks dusted in snow. I knew I'd pay for it but it would be worth it.

Or it was the relaxing swim I enjoyed at the neighborhood pool a mile away. First time there, I was able to soak off all the aching muscles from my great ride earlier in the day. I didn't swim too much, but it DID feel so wonderful to feel normal again. I took it slow, knowing I needed to build my muscle mass back up...oh, do I ever!

Or it was the nice little walk through the woods I took when I got home from the swim. I knew I shouldn't go far, so I took it easy, and was so blessed by the smell of the damp woods. I was not lonely ... I had deer tracks and turkey feathers and the nearby "gobble" from a tom when I whistled a bit. A perfect ending to a perfect day!

It was probably due to all of these things I did, this pain that caused me to writhe a bit and to gasp aloud, so intense, so deeply profound and breathtaking...I prayed for respite through tears. And waited for the drugs to kick in.

Or, it wasn't due to any of these things because I didn't do any of them. I didn't vacuum yesterday...I didn't sweep...I didn't clean house...I didn't play ball on the lawn with the dog, I didn't walk over to my neighbor's to chat, I didn't I didn't I didn't I didn't I didn't I didn't!

What I DID do was go grocery shopping. We drove in our comfy car to our shopping town, I walked through one small store, a hardware type store...and I walked through the large Grocery Outlet store because the prices are so cheap there and we need cheap!

All concrete surfaces. In very comfy walking shoes. Didn't I think first? Why didn't I realise I can't do something like the extreme sport of grocery shopping on a day when I feel halfway good! I mean, that is right up there with kite surfing, rock climbing, skateboarding, cross country skiing, I should have known better!

Sorry for the sarcasm. It's hard to choke down some sort of anger or bitterness when it hurts this much.

Rejection? I went to the drug store while in our shopping town 35 miles away from home, and once again drove up to the drive up window and asked if work comp had authorized my Lidoderm patches...yet. The pain I feel this morning is exactly the pain that the patches really work on. I can put them on at night and not have to wake up in quite this bad a shape.

I first asked for a refill in early October, on the 2nd. I was told work comp would not authorize the refill (even though the box says it has a refill on it). I was told it would have to go into review. I waited until 3 weeks later when I got the rejection letter from work comp, saying the patches were denied.

I asked my PCP to file an appeal, so he wrote a letter explaining that when I use the patches, I don't have to take as many oral meds. That was 2 weeks ago.

Yesterday, the pharmacist told me that he could refill the RX, so we went and participated in the extreme sport of grocery shopping and then returned. I walked in this time, needing to use the rest room. Braced up in my CTO, I expected I was picking up the patches that would help me so much.

What I was expecting and what I got were two different things, of course. The gal said the patches were still being denied. I wanted to cry. I was so weak standing there in the vest. I felt so vulnerable, so tender, holding up the line behind me (couldn't look behind me, but when I finally looked after feeling so guilty for ten minutes, I saw no one there). I felt such a "nothing" as I waited for some pencil pusher in an office in CA to decide if I should suffer or not. Obviously, he has never experienced this sort of pain.

Tears started to form because the rejection pushed so many buttons previously installed by neurosurgeons, neurologists, doctors of all kinds who disrespected me and told me I had emotional problems (until Dr. B so easily found that my neck was still broken). I walked out of the drug store feeling stepped upon, a ratty old door mat no one notices anymore, that ought to be replaced because it is worn out, used up and ugly.

In spite of all of this, however, I did have a nice day yesterday, with less pain than usual. Perhaps the pain this morning is also because I took less pain meds, as they leeched out of my body, the true tenants, the ones who sub-let to pain meds on a temporary and ephemeral basis, began to rock it on out in a no-holds-barred parte'. One I didn't like being invited to.

pardon all the metaphors and analogies this morning!! Sometimes, for a writer, they bottle up and then blow the cork...uh I go again!

Sunday, November 23, 2008

Now an ear

I'm sitting here in my CTO brace (feels good) because I have another new symptom now. I had this last night pretty badly, too.

As I said before, something started when a few weeks ago, I turned my head right and looked slightly up. I started getting different and more acute pain in the occipital area. Well, now it's affecting my right ear ... my right eye.... even the sole of my right foot.

That's right, early this morning, I had it for the second time (it's premier appearance was yesterday). And not only was it burning pain in my right ear, the pain went into my eyes again, and I noticed my right arm and hand were also hurting, as well as my right foot.

Tonight, while eating supper, the chewing action set off the pain in my ear. And it didn't go away. So, as I usually do, I put my CTO on for awhile, and it "helps." Quotation marks around "helps" because I can still feel the stabs from time to time in that ear while sitting here, writing. Swallowing makes it hurt worse. Chewing, too. Talking, too. Something has gotten "loosey goosey" in my skull base area that wasn't before.

Last night before bed, I felt like every muscle in my body was tight, "wound up like an 8 day clock," my Dad would say. I took a small tablet of Flexeril, and that caused me to sleep in the same bed all the way through the time I woke up at 5:45.

After getting up and having 2 cups of coffee and watching TV, I fell asleep in the recliner and woke up 90 minutes later! I started to move around, cleaning up dishes in the sink, making the bed, answering a couple of emails, and my hands started tremoring and I felt like all the stuffing was knocked out of me. I laid down on the guest bed with the dogs, and slept another 90 minutes.

It's all due to the Flexeril. On the one hand, I feel it is good to catch up with sleep, since I operate on only about 4 hours of sleep every night. My brain has felt quite clear today, on the times I've been awake, ha!

But I do not think I'll take Flexeril again, unless I'm post surgery and really need it. I hear the neck spasms mercilessly after the fusion surgery, when muscles and skin and such are pulled up into a position they've not been in for oh, so many years.

I'll take Ativan instead. That never puts me out...and should help to relax muscles.

What a lovely day outside today. I'd have liked to have been out in it, the sun was trying to warm up the air but it being almost Thanksgiving, there was still a lot of coolness to the air. I barely stepped out to take a warm, big, chocolate chip cookie to my husband who was waxing our new car in the shop.

Yes, a new car! I can't recall if I mentioned this here or not, but I'll write it out anyway. When my son and daughter in law were here last July, we drove around a lot, and my DIL said to me, "You need to have a bigger, more luxurious car! And an automatic. All that shifting done by your husband is rocking the vehicle, the truck is too rough riding."

That got me to thinking for six months, and I really noticed how rough our little truck is. And going around corners, I'm all the time tense and holding onto handles to keep myself upright while in the CTO. So, I broached the subject with my husband, and we found, our first day out looking, a nice 2000 Buick Regal LS. It is a regal car indeed! We are not ones to have had a luxury car in the past. But to have all the bells and whistles, and a Monsoon Concert sound system, too!! And the leather seats wrap around me to where they hold me in place around corners, factoring in the suspension made for cornering.

We only paid $2500, a true gift from God when the Kelly Blue Book says the car is worth $5200.
And from a very nice, farming family. I plan to ride in the old truck as little as possible!

Friday, November 21, 2008

Hands and eyes

To again record symptoms I perhaps have not listed here yet, I have had these two for a while now, but the hands are getting much, much worse.

With my eyes, when I wake up in the night and then awake for awhile, I'll sit at the computer and play Spyder Solitaire or read blogs...and I find that my pupils do not close for the longest time. They must be wide open, and it hurts terribly for 30 minutes or so until they finally adjust to the light. Reminds me of when I've had my pupils dilated at an opthamologist's and how painful my eyes were even with sunglasses on as I was driven home. In fact, I have tried sunglasses on in the middle of the night and dimming my computer screen to almost black, and still, my eyes are burning and almost impossible to see through.

I looked this up, finally, yesterday. This is called "sluggish pupils." And either occurs in those over 70 years old, or those with MS, or someone with pressure on the optic nerve. My symptoms, in some areas, greatly resemble those of MS, a nerve demylineating disease. In fact, I was told once by a medical professional (this was about a year post injury) that she thought I had MS. Because her mother had MS, she even called herself an expert.

I researched MS online and even joined for many months an MS support group. Until, God led a woman to post on that group about Chiari Malformation, which led me to learn about The Chiari Institute and meet many strong and beautiful, long-lasting friends. I do not have congenital Chiari, but I have an acquired chiari due to the trauma.

My hands...this is the worsening symptom. They are becoming very weak in their grip to where it is painful and difficult to open a doorknob or use a spoon to stir a cake mix together. Every morning (or in the middle of the night....I never wake up in the morning having slept all night), I wake up with my hands burning, feeling like they are asleep. I wonder if I have my hands clenched in fists while I sleep. The palms start to itch and the pain stays in them (the entire hand and all fingers, both hands) for a very long time, sometimes all day.

We all know that hand pain is often linked to upper Cspine. That is where all those nerves originate.

Again, it all tells me I must risk this surgery.

You might wonder (as I would, if I were not me) why I keep stating over and over, "It's time."
"I must do this." "This tells me I must have this surgery." ad naseum, I'm sure, to the umpteenth degree.

It's because having the surgery is on my mind 24 hours a day. Well, perhaps not during the 3 or 4 hours of sleep I get each night. As I lie in bed awaiting sleep, I think of it. I reason it out. I think of so many others who have done worse since the fusion. Of their hardware coming loose. Of having to redo it all in a few years. Because online support groups are only visited by those who are suffering, that is pretty much all I hear. The ones who went on to lead incredible lives are not on the internet, really not even in a mentor-type position. They are off having fun.

I have the names of two people only who have done well with the fusion. One just wrote to me that her fusion, done two years ago, is failing.

What do I do if I choose not to follow through? What if mine fails? A halo for the rest of my life? My doctor says no, just the Johnson CTO. Heaven forbid.

What do I do if I do nothing, and things just worsen and worsen? I really don't think, even though I have the histories of so many patients who are suffering post fusion, that I have the option not to do it.

It's like Butch and Sundance at the end of the movie. In front of them is a steep cliff, with a shallow river at the bottom, a hundred feet below. Behind them are the Bolivian police with shotguns aimed and hammers back.

They jumped.

Some historians believe they survived.

The other thing that I deal with is my husband. A wonderful man, as I've written. But his life has become just staying home and being here for me. He has many fruitful years ahead of him. So, when it's possible, I force myself to drive in the car with him to get the mail in town. I bake him cakes. I sit in the recliner and watch shows not so interesting to me (Homicide and Cops etc) because I love him so, and I feel badly that his retirement years are not traveling and sightseeing as he had hoped. He never mentions this to me, and he never will. He might not even think it. But it haunts me.

Well, time to take the cake out of the oven and get dressed and go along for the ride to the Post Office.

Thursday, November 20, 2008

The time is now

part of me hates to post when I am in the throes of suffering.

Yet, this blog is not just an idle journal or a way to keep records for me. It is my way to chronicle what I am going through medically, and as I look ahead, I see quite a journey that will need recording. If I wait until I feel better, I will not remember what this feels like. Please read no further if you want to read only the pleasant accounts of my trail.

I've been working up to this day. A quick glance through past posts can easily tell that I have been slipping downhill through the mud and underbrush of this dangerous nerve compression.
It's not all a pretty sight.

Today is the worst I have had in a very long time.

When I get up in the morning, I have my usual lumbar area pain and hurting feet and legs. I get my coffee and sit down in the recliner to watch the news with my husband. And when the weight of my head starts crushing on what it is crushing on, what I go through is hard to bear and harder to describe.

The all-over "neuro" feeling, the buzzing at the ends of my fingers of both hands, my 24-hour jaw tremors amp up so I can't keep my mouth closed.

I've described this to women before as feeling like the worst day of a really bad period, that very deep and profound achiness, combined with all the other stuff. Scalp hurts, hurts to move my hair, occipital pain, eyes hurt.

The profound itchiness (I know, you've heard it all before! So have I, for so many years now!) which kept me from going to sleep last night. My eyeballs itch, the insides of my eyelids itch.
Organs inside my belly seem to itch.

Finally, I put on my CTO vest, something I don't need to wear (per Dr. B) when I'm "hanging out" around the house. This helps immediately to some extent, and ANY extent is better than NO extent! I can breathe a little better, swallow better.

I laid down with the CTO on, not an easy or comfortable thing to do, but as I keel slowly over toward the pillow, I easily sense how much better it feels with my neck stabilized by the CTO than without it on. Something is holding my head up. Thank you!

Nauseous, oh goodness, I have felt so sick to my stomach today. Common for folks with this sort of nerve compression. I sucked on a ginger drop, but that didn't work this time. Later in the day, I ate three saltines and sipped a tiny bit of O'Doul's and that really did help.

I fell asleep, rigid in the CTO, with my two mutts on the bed with me. It's been one of those days. Very very weak. Dr. B calls them "pajama days" but this is the worst one I've had in years.

So, I finally wrote to my neurosurgeon and told him that I'll be getting my DEXA scan next week, and Dr. Fu will be making his evaluation about me and a fusion surgery. I'm ready.

Wednesday, November 19, 2008


I write here mostly about medical appointments and decline and such.

But I must make it known that I do lead a happy life, though that may not be apparent from my posts! I try here to write the reflections of someone chronically ill, with chronic central pain, so that others may read this and relate. Other readers will understand and have insight through a window they perhaps might have never seen.

But it can all end up sounding like a bit of whining and complaining, I fear.

I do have smiles and giggles and happiness in my life. I have so much for which to be thankful. I am reminded every day that I should not be alive, and such a close brush does cause a constant state of gratitude...a constant feeling of walking in grace....

Though I must humbly state that I was always one to be filled with awe and gratitude. A mountain view seen each time I drove into town never became banal to me. I have always gasped and gushed many times at the view we see when we drive to our shopping town. For twenty five miles of our journey, we pass through a National Scenic Area.

How thankful I am for my husband. Together for 35 years so far, we are best buddies and finish each other's sentences. We say something and the other says, "I was just about to say those very words!"

He is funny and witty and keeps me laughing and trying to come up with ways to cause him to smile, as well. We are compadres, partners in crime, peas in the pod, BFFs, and we know we will always be there for each other, through thick and thin, because we've already stuck through all the various "viscosities!"

I'm so appreciative of my home, which is good because I spend an awful lot of time in it. I love each wall and door, floor and ceilings and the spot it sits in; the view out each window; even the sound of cars passing by on the country road below us.

I love our town. I don't know hardly anyone in it, but I always comment on the beauty of our broad valley, the views of Mt Adams looming nearby and the far-off, snow-capped tops of Mt. St. Helens and Mt. Rainer to the west and north, and then Mt. Hood reigns over the vista to the south. The valley is flat and wide and sights of grazing cattle, wind towers on the Columbia Hills, tractors in the fields tending their winter wheat, dusty, muddy pickups in the parking lot of the grocery store with stock dogs in back, perched on top of fuel tanks that service those tractors, all pull at my heartstrings and make me feel warmly at home.

Victorian homes grace the streets. Well, some streets. There are also many small, poor homes on our streets, too, for unemployment in our little town is sky high since the aluminum plant shut down. Old cars, unrestored ones you'd never see on the streets of California with its strict emissions laws, park in front of the $1 store (The General Store); the thrift store; the senior center; the hardware store; the Chinese/American restaurant; or one of two lackluster bars on Main Street.

How I love our court house. Here, in a poor, farming county, we have a fascinating piece of art deco architecture that simply amazes me. I'll take a photo some time and share it here.

Our road as it leads from town delights my soul. The Ponderosa Pines and the oaks, always in a state of flux, frame the paved road and, right now, wood smoke rises from many of the homes' chimneys, and the sight and smell of this makes me take a deep, grateful sigh. I am at home.

I have so much for which to be thankful, each moment of the day. And I am, pretty much, in that state of gratitude. Thank You, Lord!

And I just want my friends to know that.

Monday, November 17, 2008

Yesterday, I was telling my husband a funny story of how I had mixed up, while talking on the phone to my mother about vacuums, the word "Eureka" and "urethra." It was hysterical and I laughed so hard, that right away, the top of my scalp went taut, my scalp burned and tingled all over, and also down the back of my neck. My arms started to ache, my hands and fingers. Extreme and diffuse weakness. And when I ran my hand through my hair, the follicles were particularly painful. And I also started to sweat and feel very flushed.

I can't allow myself that kind of abandon. I will always pay for it neurologically. I turned on my little fan, and then gave up trying to feel better and laid down and fell right to sleep for 90 minutes.

Last night, while sitting in the recliner, I awoke to become aware that I had drifted off to sleep. The time was 11:45 and my head had lolled off to the left and down, with my chin on my chest.

Not a good position for me to have held for an hour. Knowing what I have come to learn about our anatomy and the position of my odontoid (C2) bone next to my brainstem, a position like that is...well... to be avoided.

Today, I noticed a lot of extra symptoms and added pain. In the morning, even after two doses of oxycodone, the right back side of my head stabbed with pain, the pain ran up over my head into my eyes, particularly the right one. I had pain in my right arm, my right hand, my right leg and stabbing pains in my right foot.

I also have had trouble with typing, letters all mixed up and I have to try over and over.

Lots of extra weakness today. And tonight, severe, burning itching all over, most of all on the outside of my right elbow. Deep, penetrating, lancinating stabs of pain that take over my whole body and brain, stop me in my tracks, take my breath away. I've been sitting with ice gel paks on my arm a lot tonight, scratching my back and shoulders and arms with the spaghetti tool.

I had asked the pharmacist if I could take Benadryl when these parasthetic itchings come on, and he said he did not recommend it, combined with the oxycodone I'm taking. He was afraid it would suppress my respiration. That blue tablet, Benadryl Severe Allergy and Sinus Headache, used to do a good job on the itching.

One thing I've not written about but has been common for me for the last 4.5 years is that if I stop to notice (and I do several times a day), my body is very tense all the time. I might find my right hand clenched in a tight fist, or my "glutius maximus" muscles extremely tense, even though I'm relaxing in the recliner or in the car. I have no idea what this means, whether it is evidence of the Post Traumatic Stress Disorder, or something else.

Early tomorrow morning, I have an appointment with my hematologist/oncologist. First, at 8 am, they will pull blood for tests; next I will meet with Dr. Fu; and finally, I will have the 3.5 hour IV drip of pamidronate, the bone strengthening regimen I've been on for 18 months.

I intend to tell Dr. Fu that I am very anxious to move ahead with the fusion, and that I want him to schedule me for the new Bone Density Scan (DEXA). From this, he will tell me if he thinks it's finally time to schedule the fusion surgery, and I will pass this all on to Dr. B, and hopefully will move ahead.

I say I'm " anxious" to have the surgery. I'm very nervous about it. But I have studied and researched and interviewed patients with this surgery, I am getting much worse and quickly, if I'm going to do it, I need to bite the bullet, cowboy up, set my jaw and get 'er done.

Bet Larry the Cable Guy never expected his slogan to be used in an instance like this.

Thursday, November 13, 2008


I was up until 1 am last night, battling fire ants.

Wondering if I should take a big dose of oxycodone, if that would help me at least sleep through their attack. Pain medications do not work on central pain, that peculiar torture that emanates from the spinal cord. But sometimes, I still try. But last night, I didn't.

A stab of burning itch hit me on the outside of my left knee; on my collarbone; on the top of my right hand; the top of my left foot; here, there, never twice in the same location; burning itch that seems to have immediate access into the deepest caverns of my brain, which must be popping and misfiring like an old Chevy truck runnin' on 3 cylinders. The hot poker stabs only lasted a couple of seconds. Although I knew it doesn't help, I reflexively kept reaching to scratch the outside of a knee, the sole of my foot. Over and over. Even on the inside of my eyelids.

This morning, I am weak beyond words and the tortuous process seems to have settled into my right eye.

The other day, while in town, I looked up just a tad to look at a display of windchimes on sale at the hardware store, that were hanging at about 7 ft. high. My neck at the C1 area was shot through with stabbing pain. This is rare for me. Usually, the skull base area throbs all the time, but I don't often have harsh stabs of pain upon movement, for the most part.

[When I was hanging in the Invasive Cervical Traction a year ago in NY, the doctor reached up and grabbed hold of the chain or cable or whatever I was hanging from, the pins of the halo pinching my skull. He turned my head by twisting the chain so that they could get the view in the CT they wanted. He turned it to the left and I felt, wow, such an electrifying pain, I told him to stop. And I know I had pain like this right after I broke my neck.]

I took an Ativan the other day, all I had with me that I thought might calm my muscles or something. We went to a movie, but if I moved, I still felt that stab at the skull base again.

This morning, I feel this again, though not as intense. Along with a watery right eye and that neurological pain within it. This is trigeminal nerve stuff. Pain that starts at the back of the head, goes up over the ears and into the eyes is following the trigeminal nerve.

I have been staying home and inside all week. Yesterday, I did not step out once. I did do some hand-sewing beside an open window as a rainy, stormy breeze swept across our yard and set leaves dancing. The fresh air was wonderful.

And I felt a poignant twist in the gut about where my life is now. I didn't cry about it, it was more like fact. I used to conquer the mountains, the rough trails or no trails, the secret, hidden places where others cared not to ride. I breathed more fresh air than inside air. I was blessed and knew it.

Now, I look out the window at the mountains, the storm clouds gathering...I open it to taste the elixir of air wet with decaying leaves, the neighbor's woodstove, glistening rocks.

Many years ago, after my elderly father had suffered several strokes, I remember him sending me photos he'd taken of each room in his single wide trailer house. With his walker to steady him, he creaked from room to room, stopping, finding his balance while he straightened up, righted the camera, checked the settings, and snapped the shot. My heart at that time twisted for the man who used to send me pictures he'd snapped, a few years earlier, through his windshield of Wyoming highway, prairie, antelope....rushing see him limited to taking pictures withing the confining walls of a small, wood-paneled home, it hurt the heart.

Now, 20 years younger than he was then, I am almost as limited. Maybe more so, because Dad was able to drive up until the day he died at 80 years of age. My arms and hands are becoming tremendously weak. I am worse than I was two months ago. I would leave today for the fusion if I could.

I read a report from a neuropsychologist who interviewed me in September. He said that I am reclusive. If I could change that, I would, through determination and guts, just like I and my horse struggled up rocky cliffs or through thick brush, up over mountain passes or across deep rivers. But sometimes, I am learning, guts, will, determination, all will not get you far.

I am ever-learning. I always thought they made up for everything.

Sunday, November 9, 2008


Someone told me once that if something is wrong inside the body, it will come out to the surface one way or another. It wasn't a doctor, it was more like a health-food-guru of some kind.

Something I've never chronicled for myself, probably among many things, is an indicator that something hugely stressful is going on with me. Since my injury, I've had two small areas where blood will rise to the surface and look like a glaring, red birthmark or something, if I have been under some stress.

It will show up exactly in the same spot under my right eye, or at the bottom, right side, of my lower lip. It doesn't hurt. It's just blood rising up to the skin level but not all the way, there is no bleeding. I would describe in crude terms as the same as a "hickey" that teenagers give to each other on the neck. But these are not that large.

They stay a day or two and then they go. I have one now right at the edge of my bottom lip, right side. My husband told me I had some food there to brush away, but I told him, no, it's just a stress indicator. One of many, I'm sure. Like when my arms itch so badly (as they are right now). And hot pokers stab at my feet. Or nausea floods over me like an angry, ocean wave.

Everything but the smell of sulphur

It's been a rough few days. Today was really bad.

I woke up at 3 am in pain, took a pain pill and went back to bed, woke up at 8:20 am, then fell asleep in the recliner again for another 90 minutes. I woke up and made myself get up and moving. And I went outside and did a few light, slow things...raked, slowly, some leaves for my husband to put into the compost bin (very few leaves)...I walked about 50 ft up the hill directly behind our house and I thought I was gonna die before I got back.

In the house, I took a pain med and laid down and slept another two hours. But before I did that, I finally came up with a description for what it feels like when I'm really bad. I told my husband that my whole body feels like I was hit by lightning 30 minutes ago. Ends of fingers buzzing; burning electrical sensation throughout all of my body. It drains me of absolutely everything, and that is why I slept so well for 2 hours in the middle of the day.

Right now, it seems too much to type. I am only doing so because I don't want to lose the thought of how to describe the neuro feeling I get every day.

Thursday, November 6, 2008

Christmas in November

I experienced a fun thing this morning....

Want to brighten up a cloudy day? Been feeling blue and need your spirits lifted a bit?

Last week, I received in the mail an envelope of coupons for a bunch of junk made in China, all worth about 50 cents but selling for the remarkable price of $1 to $8 !! What a steal! I thought, "Hey, these are some things I can use! A garlic chopper, a tool to reach up and clean the ceiling fan blades, some screen patches to fix torn window screens. These things are cheap! I thought.

Well, I ordered them online and my four cheap items, with shipping, added up to $29! Oh well, I just went ahead with the order.

Today, the box arrived.

Being brain injured, I'd forgotten I'd ordered these things at all. When I saw the box, I remembered then that I'd placed the order, but could not remember anything I'd bought.

Wheee! Christmas! What fun I just had opening up my cheap plastic bunch o' junk! But really, some of these things are going to be really handy. Like the 10" tweezers! (Did I ever mention my eyebrows?)

In life, we all gotta look at the fun that is out there available. I could have been so disappointed at the garlic chopper with the cap that didn't even screw on, or the screen patches and I could have brought myself down with thoughts of "what a rip off!" But I've always been that "beer mug half full" kinda gal, and I did have a lovely time.

In fact, I've already cleaned my fan blades! And that one tool is actually really well-made!


parents and their little boys

Our son is turning 28 soon.

He was conceived when we were snowed in for five months during the worst winter "since the 30's" in New Mexico. We lived 9 miles from where the snowplow stopped, literally on the Continental Divide on a beautiful, old ranch.

He was born in the Indian Capital of the World. We were by then working on a little ranch 40 miles south, where we were provided housing, a single-wide trailer set up on cinder blocks in a hidden canyon. We had electricity and water, but not much money. His father made $300 a month, working from the time in the mornings before the sun came up and he was milking the boss's cow until the dark of night when the cow needed milking again. I was hugely pregnant and waddled around the ranch visiting his father where I could.

One morning, I was washing out our clothes by hand, and hanging them outside to dry on the lariat rope we'd stretched between the trailer house and a pinon tree. Mostly, the line held heavy work jeans, dripping wet and already frozen in the November chill. I suddenly felt my water break, and so I finished hanging up the clothes, then walked down the hill to the "Cowboy Stopover," a local, convenience-type store that had a payphone. I called my doctor 40 miles away, and he said to shake a leg and get in to the hospital.

I trudged back up the hill to where my husband was up high on the roof of a new barn he was building and told him he needed to quit and come down and take me to the hospital. Then, I walked back back down a different dirt road to our trailer, my hips slipping out of place as I took each step.

He came home and collected me and my little suitcase, we drove the pickup down to our boss's saddle shop, to let him know that we would be gone and why. He asked, "Do you really have to go now? How long will you be gone?" My husband told him to take a flying leap (actually, I'm sure a much more obscene phrase was directed the boss's way) and we drove on in to Gallup, the town in which we'd been married eight years earlier.

28 years ago. Now, our son has recently married and his life seems really good. They have their struggles, but God has answered my prayers and given him a good life partner, and he has work, and they do a lot of fun things together.

I think it's so important for people to have what I call, "Yahoo Fun." I've called it that for years. And from what I hear from my son, they are doing that, out on boats and ATVs in the dunes. This lovely woman has brought him that.

To us, he's still our boy. How do you get out of the habit of thinking of him that way, when you've done it for 28 years? When his happiness is still first and foremost in your minds even though you are a thousand miles away? We don't try to change that thinking. We believe it's a good thing.

So, what to give this kid for his birthday? All we could come up with at first was a simple check so they could all go out to dinner. But my husband had a brilliant thought yesterday morning. He suggested we find a remote-control boat, for the whole family to enjoy out on the lake when they are out there boating. Or, if the weather is too cold for boating, they can play with it from the shore. They live in California, where the weather is pretty nice through the winter.

I found one online that was perfect. A boat 3 feet long! And free shipping! How perfect this all turned out. I can see him opening it and saying, "Oh, cool!" He always appreciates gifts, no matter what they are. He has a 13 yr. old stepson now, and both he and his mom will find this a lot of fun, too.

And that parent of the little boy who was born in the Indian Capital of the World, who grew up on ranches and played out in the hills and rode a small motorcycle when he was five along all the ranch roads, who started flying when he was 13 and owned his first plane when he was 16, who earned his commercial helicopter rating and became an FAA certified airplane mechanic...the parent of that little boy inside of us is well-satisfied, too.