severe

Just now reading again that excerpt from Dr. B's report on my follow up visit, and seeing that not only did he write that I have FCS (Functional Cranial Settling) but there was that important word in there that I did not see before, so blinded was I by the bright lights of "FCS"...

"severe"

He wrote about what should be done until I can have the fusion surgery, starting with: "continue conservative management of severe FCS..."

severe....

It's odd how a word can hit you kinda hard sometimes.

Odd...

I posted before about this spot on my right calf, that feels like there is warm oil on it.

I've had some very bad Charlie Horses in this calf lately.

I'm remembering right after I broke my neck. I was lying in the hospital and was a mental mess, but I was sure the back of my head was bleeding. I felt warm fluid, like blood, in the occipital area. I begged the neurosurgeon to check back there, though he kept insisting it wasn't bleeding. Finally, he put a finger back there and it hurt so incredibly bad that I roughly pushed him away.

I also think back to that time and how badly the back of my head felt, that I spent a lot of time, when I was awake, thinking of how badly it felt when the EMTs put me onto that hard backboard. Bumping over dirt roads to leave the ranch and stopping at traffic and stop signs, I was delirious with pain, begging the EMT who was riding with me and watching over me to pray with me (he wouldn't).

I recall now that, in those days hazy with pain, I thought I had the most ingenious and revolutionary idea that, when I got all better, I would develop and it would help so many. A simple gel pad for the head to rest on while strapped onto the back board. I remember telling the neurosurgeon about this, tho he didn't seem so impressed. I suppose, now that I can think more clearly, that this is something most likely used often, just not in my case.

Anyway, I did get off track, as I was writing about my right calf. So, for a few days, I've had intermittent feelings of hot oil on the outside of the leg. Today, it has increased to feeling like that all the time. And tonight, the whole leg is hurting, the foot is throbbing and gets occasional shots of pain, and the calf feels like it's on the verge of a Charlie Horse all the time. I wonder if tonight, or early in the morning, I will get hit hard with that spasm that takes my breath away.

In reading the AME reports, the neurologist stated that, upon examination, I drag my right foot and have "mild spasicity." He was so right, it seems. Though the mild part might be in the past.

It's odd to have something so new come up now. It's not the worst thing anyone has ever experienced. It's nothing compared to the incredible headaches that my peers suffer. But it's new, it's worsening, and when you have what I do, you can't help but wonder if you might lose the use of the leg someday.

But these days, I face all of these things with a positive attitude. I know they are all pushing me willingly to the fusion. Something I dreaded has become a welcome goal. Now, I just pray Dr. B will proceed with my surgery in light of whatever my next bone scan results are. Dr. B, in his report after my follow up last May, wrote: "Patient is aware of possibility of CCF (craniocervical fusion) to be intraop aborted in case of normal DEXA scan but severe osteoporosis at C spine site."

I can't imagine going into surgery, and then waking up to find that no fusion took place, that my bones were not good enough to hold the screws that hold the hardware in place, that I will have to live like this and progressively get worse.

Trips to Town

Today, I went to town.

I actually live at the very edge, inside the city limits of a small town, 3500 pop.

So, I guess I live in town. But it doesn't feel like it here. There's a stretch of empty road between us and town without any houses, only oaks, Ponderosa Pine and wild turkey and deer.

We ARE a mile, though, from the center of town. So, today, my husband gave me a ride into town. I felt really sick and in pain, but thought I'd make myself get out and try to feel better. You know what I mean.

So, first we stop at the Community Store. This 2nd Hand shop is a great thing, they sell used items and the money goes to helping get food to the hungry in our community or to clothe them, find them a place to stay if they need it. There are no homeless in our town. I give all of my clothes I can't fit into any more to them...I took a big sack of cucumbers to them one day in late summer, too. I like supporting them.

The kind lady who received our big box and big shopping bag of stuff noticed me in the CTO vest, and said, "How long do you have to be in that?"

I know I could answer, "Oh not long" or something short, but this is a little town. To answer this way, it's just rude. It's like saying, without uttering the words, "None of your business." I'm not like that, I couldn't hurt anyone's feelings like that. And I do appreciate that people care enough to ask.

So, I quickly told her my story of how I broke my neck and when I'm going for surgery.

Leaving there, we drove to the hardware store. I picked up some gel stain and some Danish oil for an office project my husband and I are hoping to do this winter. The young lady who rang up my items said, "THAT looks uncomfortable!! What happened?"

I gave her my Readers Digest condensed version, one I know, oh so well. And thanked her for asking. I wouldn't want her to feel guilty about asking me. I want her to feel free to ask, and to not act like a disability is something you pretend doesn't exist.

We backed out of their parking lot and drove back into town to the General Store. This is such a great store, it's OLD and there is an rusty, weathered, for real, gas pump sitting on the curb outside of it. It's not sitting there as decoration (this isn't a tourist town) . It's never been painted. It's just sitting there because it was there when they used to sell gas there. Don't know how long ago that was, but the price of gas then was 39 cents a gallon.

I pick up the ziplock bags I needed and go to the cash register. I'm still wearing my CTO. The woman asked, "How long you gotta wear THAT thing?" I give her the same story as I have just related twice before in the last half hour.

We back out of there and head west on Main Street, then take a left on Columbus Avenue to drive about a half a mile to our post office. I go in to mail a book to someone in France, and the man behind the counter asked, "How is your neck doing?" I've long ago told him the "how I broke my neck" story, so I tell him not so hot and I'm ready for surgery. He asked what would they do for surgery. I described the rods that go from crown to C5 and then a halo brace.

He backed away from the desk and held his stomach and said, "I'm sorry, but I can't hear anymore. I feel like I'm going to faint." He told me that he could not take hospitals or hear stories about sick people, it always makes him want to faint. I told him he must have "sympathetic anxiety." I just made that up and felt quite proud of myself, but also stupid for making an elderly gent almost faint.

I walked out of the PO and put my mail on top of the Sentinel newspaper box, to look inside my purse for a couple of quarters for the paper. I didn't see a young black lab tied to the post behind the box until she lunged at me suddenly with treacherous barks and show of teeth! I jumped back and said to the woman who owned the dog, "Oh, that scared me!"

The woman said, "She never does that! It must be that thing you're wearing!"

I got into the truck and told my husband the story, and said, sardonically, "Oh, that made me feel so good! I love going to town!"

One more stop, at an antique store to find a birthday present for my new daughter in law. I wore the CTO inside...the woman at the counter asked about it....I briefly told her and thankfully, she didn't faint or own a dog.

No wonder I stay home!

A Snake's Belly

I feel lower than that.

My legs are just so weak, with the pain not that bad due to the pain meds. But the weakness, I feel like I've been poured into my skin...a snake skin about to be shed.

I've not been able to even walk outside at all today. The compost bin is 100 ft away, and I couldn't get out there, though I wanted to. Sunny, nice day. Just could hardly move all day.
The weakness is diffuse throughout my body, hands seem too weak to type.

Why today? Usually when I have something like this (called a paroxysm, or sudden onset of symptoms), I can pinpoint what caused it.

One thing that I think will sound perhaps unlikely. Last night, I had a nice time picking out the music for the playlist I put on this site. And then listening to it. Now I understand why people like IPOD and such, they can listen to just their favorites. It's addictive, intoxicating.

And as I listened, I sang. I used to sing on stage with a couple of different bands, one a cowgirl band I helped found, and another a bluegrass band. I loved singing, but now, it's something I have to avoid. I have found that the act of singing greatly affects the skull base area.

It might be the opening and shutting of the jaw, or the resonator effect of the skull when one sings, I don't know. But my singing and harmonizing last night, I feel, caused this today. I'll try not to give into the temptation of singing again.

Tonight, I have that bruised feeling on top of my head where I landed so long ago. It's odd that this should still happen, obviously it's damaged nerves. I move my hair and the movement of each hair hurts at the scalp. If I touch the scalp, it feels like I knocked my head into something recently.

I also have a patch on the outside of my right leg, at the calf. It feels like it has hot oil on it, a liquid warmth, about 6x8 inches. I know this is from the spasicity I have in that right leg which causes me to drag it (according to the neurologist) and to have such painful Charlie Horses at night there.

Now, I'll slither off back to the recliner.

Alas, an additional diagnosis: Cranial Settling

What a surprise. I was reading a report written by an "Agreed Upon Medical Examiner" who saw me in his office last month for evaluation. He included pages and pages of detailed references he'd read and studied from my voluminous medical history. He caught something I never was told.

He read the report from my follow up in NY last May. I have not asked for a copy of this report, it just slipped my mind. And I have an additional diagnosis. Surprise.

"Functional Cranial Settling" per the good doctors at TCI.

So, I've done some investigation into FCS. I did not know that Cranial Settling is the same thing as Basilar Invagination. That is where the bony finger that sticks up from the C2, known as the odontoid or dens, sticks up through the foramen magnum into the brain. It's something of a big deal. I didn't realise I had this.

Here are some internet quotes I've found on FCS:

Cranial Settling The uppermost bony portion of the neck is called the dens or odontoid process. The skull rests on this process and rotates. Cranial settling occurs when this bone protrudes into the hole in the base of the skull called the foramen magnum. This can be congenital (from birth) or from conditions such as Paget's disease or arthritis. Cranial settling can cause pain in the lower part of the skull and upper neck. It may also cause compression of the spinal cord, which may cause extremity weakness and numbness. This condition can be treated by surgical removal of the dens followed by instrumented cervical fusion. http://www.bcm.edu/neurosurgery/defs/def_a-d.htm (Baylor)

tip of odontoid process, which may be expanded by surrounding pannus, is brought into contact with the cervicomedullary (brainstem) junction; http://www.wheelessonline.com/ortho/atlanto_axial_impaction_basilar_invagniation

The C-1 ring continuity prevents horizontal spreading caused by the wedging of C -1 between the occiput and C-2 and thus prevents cranial settling. www.aans.org/education/journal/neurosurgical/june99/6-6-7.asp-46k - (this shows me exactly what happened to me. I do not have C-1 ring continuity. I have a one inch gap between bone ends at one fracture site. Certainly it spread and allowed my skull to settle where it should not be.

Cranial settling is described in conjunction with rheumatoid basilar invagination and atlanto-axial instability, possibly representing the most life-threatening abnormality associated with rheumatoid arthritis. (however mine is not RA related by due to trauma) http://www.ncbi.nlm.nih.gov/pubmed/8303459

"Cranial settling, also called superior migration of the odontoid or basilar invagination"

This is something serious. I knew my skull had rotated backwards, but did not realise that I had basilar invagination, though it is something I have suspected for a couple of years. Dr. B had told me in May that my brainstem compression was due to the C1 and where the brainstem goes through it.

However, it is also GOOD in a way and I thank God I saw it. It gives me more, very clear and firm reasons to feel confident in moving forward in getting the fusion. I actually am confident now...but this just seals the deal.

Who I am

I know that there are many, many people in much worse pain than I.

I know that many of them also have challenging home situations: small children to care for and sick spouses to care for or ones who are not supportive.

What I write below is not a comparison. It's not meant to say I am better or worse than anyone else. I'm just stating who I am.

And I'm not sure how I got this way. But I suspect it is from over 35 years of hard work on western ranches. During that time, I not only "broke colts" and trained horses, but I bucked hay bales in from the field, stacking them into barns; I fixed fence and dug post holes; I worked at squeeze chutes and head catches doctoring cattle; I "calved out" cows, helping those in need with the process. I walked through the dark with a flashlight checking for cows in trouble during calving season. I drove truck and hauled horses. I drove draft teams. I rode lawn mowers and tractors. I cleaned the boss' house. I led out trail rides and I taught kids and dudes to ride.

I cleaned stalls and hauled feed. I did not ask a man to do what I needed done, unless it was welding or fixing a truck. I doctored spooky, wild horses when they wanted to kill me. I worked with calves to suck on new mamas who wanted to murder both the calf and me. I rode high mountain trails to find cattle and busted through brush far past where the trail ended.

Through it all, I learned instinctively to push past pain, cold, hot, tired, sick. To push past hard and sometimes to push past impossible. If a rattlesnake was in the way, I killed it. If a big rock was in the way, I moved it. My back was strong, my arms sinewy.

If it was 112 degrees outside, if the job had to be done, I still kept on.

If the temperature was 20 below or lower, with the wind blowing, it did not matter. I just put on more layers.

If I cut myself and was bleeding, I did not head to the emergency room. I kept working. One time, my husband was cutting down trees to build fence and I was pushing one as he cut it down, to make it fall a certain direction. His chainsaw bucked out of the cut and cut across my right knee. I have a 4 inch scar to prove it.

He looked up at me after seeing the tattered state of my jeans at the knee and blood starting to flow. I looked back at him, still pushing on the tree, and told him to finish the job. I never went to the ER for that. I never sewed it up. It healed on its own wonderfully.

I was no different than most ranch folks. This is how they work and live. Environment, equipment, animals, weather all pose challenges every day. If you only worked when conditions were perfect, you would never work. It was always either too dry, too hot, too wet, too cold.

And quite honestly, if I felt I had the flu or a bad cold, getting out on a horse would usually stir up enough endorphins that I felt better. I wrote a poem about this, called "Lure of the Leather." The last verse says,

"So you ask, why do I go when there is bad weather,
When I'm tired and weak and not feeling well.
But it's the lure of the lone woods, the draw of the leather,
And those places I've seen of which I cannot tell."

Now, there is today. Today, I can do virtually none of these things.

But still, I am that person. So, in my small way, I see how I operate. Today got me to thinking about it. I'm folding clothes from the dryer and I take stock of how I am feeling. My legs are throbbing and painful and weak. My feet are hurting. My arms are the worst, they are burning and tingling from the repetitive action of folding clothes. All over and throughout my body, I feel like the flu in a way, painfully weak (sorry to keep repeating this, it is the best to describe it all), burning, tingling itchy arms from spinal cord impingement in my neck, thighs that hurt as if I am having the worst day of period (though I am long past that), burning and often stabbing pain at the back of my head. What am I doing, having just made a peach cobbler, made beds, put the dishes into the dishwasher and wiped the counters, gotten dressed, and now folding clothes?

I have to think if I were, as I should be, somewhat normal, I'd surely be in bed. If I were not in chronic spinal cord pain and this sort of feeling suddenly came on, I'd be down to the ER in a split second. But there is no need to go, since this is how I feel every second of the day, week after week, month after month, year after year.

If I were only going to get things done when everything was perfect, I would not exist.

I know this speaks to so many who are reading this. I hope one of the things I can still do is to put words to what you feel and deal with. Because I certainly did not understand chronic pain until I began to go through it.

And anyway, just like that ride on a damn good horse up over the far ridge, maybe folding the clothes is stirring up a few endorphins.

hypothermia

I mentioned a few posts back that I have experienced hypothermia, that euphoric drifting off to sleep which ultimately, if not checked, results in death. I thought I might share my story.

28 years ago, my husband and I took care of a high mountain ranch in New Mexico. We had some cows there and a bunch of horses, we hauled our drinking water from a spring a quarter-mile away, bucketed wash-water up from the hand-dug well behind the cook shack, and survived well without a telephone.

As winter came on, we laid up supplies, though I had certainly never bought groceries for a whole season before. We had laying-hens on the property to provide our eggs, we had plenty of hay in the barn and feed in the bins. I remember spending $200 on groceries, a princely sum back then, on foodstuffs I felt would last 120 days or more.

As the snows started, the beauty of the mountain valley we lived in, 12 miles from our nearest neighbors, cloaked the pines, bare aspen trees and subirrigated fields. We parked our Chevy pickup across the dirt "Forest" road that led to the ranch, on the other side of the little creek that promised muddy crossings in early Spring. The four-wheel-drive was chained up on all four tires, with extra weight in the bed and a full gas tank.

But the snow continued to pile up that year, without melting in between. The wind blew the snow into tall drifts which arced around the old log cabins on the place, including the one that once served as a post office long ago. We kept feeding the fire, feeding the livestock, and enjoying each others' company.

Feeling it was safest to set a certain day that we'd ride out to gather our mail from our closest neighbors (who'd been picking up our mail for us another 13 miles away in the small town of Ft. Defiance), we agreed upon the day of Wednesday. This way, we'd know our neighbors were home when we arrived after a tough ride through the deep snow. This was before cell phones, and we didn't own a snow machine. Weeks before, the truck proved useless in so much snow. After all, our ranch, Twin Springs, was a whole 9 miles from where the snow plow stopped.

I rode a big, rawboned Appaloosa named Amigo, a tank of a horse who marched and lifted his big knees up high to break trail through the snow. Amigo had eaten loco weed before we bought him, and was never reliable, but he worked well for me that winter.

I often had eggs stashed behind me in the saddle bags, which I gave to my neighbors to deliver for me to the feed store in town. I sold them for 90 cents a dozen, and if I was lucky, I made $1.80 a week.

In true, neighborly fashion, these ranchers closest to us would always invite us to put our horses in their barn, and then to step inside their old house to the smells of ranch bacon frying and fresh coffee.

As soon as we returned home, following the trail we'd just broken through hours before, we curried off the horses, fed them a good pile of mountain-meadow hay, and then headed to the cook shack where we were living, and enjoyed our mail.

Food started to become sparse, but we always had eggs from the chickens, and when one of the range cows calved, I coaxed her into the barn and trained her to allow me to milk her. We went at least a month with only pinto beans, eggs and milk to eat.

It turned out to be the worst winter on record since 1933. Snow kept building up, eventually too deep even for old Amigo. The snow crusted over, making it even worse for horses to try to get through. We eventually started walking the nine miles out, leaving early in the morning to enjoy the relative ease of walking on crust. Often, we led a Shetland pony named Chubby, who was tacked up with a pack saddle and ready to bring home the dog food we'd asked our neighbors to pick up and have ready for us, or maybe a sack of potatoes.

I wasn't aware of it at the time, but I was pregnant when in the Spring we were hiking out, 18 miles round trip in one day, struggling through deep snow and weak crust that our weight would often break through, joltingly and adding to our fatigue. Often, the snow had drifted to where we didn't have a clue where the road was, so we followed the small power line that led to our ranch. We'd stop along the way, sit under a tree, and maybe open up a letter or two, to eagerly digest word from the outside, a world that seemed so far from where and how we lived.

One thing I recall is that every Wednesday, we had to decide if we were going to go out to the neighbors or not. Was it snowing? Was it going to snow? What was the weatherman on our radio predicting? Is it safe to try to go?

But...if we don't go, then it is a whole week until we can try to get out again! Because we must travel on a Wednesday, otherwise we might find an empty, locked house when we got to our neighbors'. With sadness, we called off the trip for that week due to bad weather. Then the next Wednesday, again, the weather was bad. I remember how sad it was when we had to forego traveling out 3 weeks in a row. How we wanted our mail and craved other people's voices!

Hiking back one time, with my backpack laden with mail and goodies, I felt weaker and weaker. It was cold, spitting snow, and we were following the power line, not giving thought to where the road actually lay. I felt extremely sleepy and weak, and unable to lift another leg. I stopped and told Pete, with all sincerity and solemnity, "Go on ahead to the ranch, feed the stock. I am going to go lie down under that pine tree where there is no snow. I'll be happy there. I'll sleep the night and then you can come back for me in the morning."

This made perfect sense to me and I was dead-on serious. Thankfully, Pete had his wits about him and urged me to press onward, saying the ranch was only one mile away. I did, and he was right, we were almost within shouting distance of the old log cabin.

Five months total, we were snowed in on that ranch. We had many experiences that I will never forget, most of them fun and laughable. We inner-tubed on a nearby hill; we fashioned skiis from old wooden bed-slats, and using mop and broom handles for ski poles, we swooshed around the valley, marveling as we glided over places where the barbed wire fences were unseen, but we knew they were there. We played cards, guitars and got along amiably well. I was afflicted with boils on the back of my neck, and Pete lanced them for me with a rattlesnake-bite kit. We were warm, we had plenty of protein to eat, and I don't recall any feelings of hopelessness or helplessness. When the snow melted and the mud dried up enough for us to drive our Chevy out and go to town, we loaded up the loco'ed Appaloosa and sold him in town. When the horse trader asked us how much we wanted for him, Pete told him just enough to buy a large pizza!

Later, I read the classic symptoms of hypothermia and realised that they were exactly what I had experienced that night as I begged to go to sleep under a tree.

Blue and Gold Days

Here is a poem written and published by my mother, for October.

THE BLUE AND GOLD DAYS

'Oh, its a beautiful blue and gold day,
A patch of the bluest sky
Is seen through the autumnal haze
of golden leaves before they die.

A purple aster sways in the breeze
A brave and lovely bloom
Its beauty we will treasure
For yes, the soul has room.

Far away the old hills dressed in splendor
Where God must surely dwell,
Await whatever winds may blow
And seem to whisper "all is well. "

Jean Brannigan--

Ginger drops for nausea

A good friend read one of my blog posts that mentions I'd like to find some ginger drops for nausea, and sent me a box of some the other day.

I tried them and was amazed how much it helps with nausea, motion sickness, and also gives a little energy, too!

Here is the link to this product where you can order it online. I know lots of people reading this probably deal with nausea from their spinal cord/chiari/brainstem issues.

http://www.gingerpeople.com/order_gingins.html

Storm's movin' in

Weatherwise...dark clouds...call for snow on the mountain passes. The colors and hues of Fall are delicious and sense-inducing. Acorns on the lawn draw in wild turkey and deer that were gone all summer come back to nibble and taste. Are they all there? The big bucks we saw often in our yard 2 weeks ago have fled somewhere since hunting season was in full force. I hope they made it, too.

The weekend was slow and quiet and nice. Last evening, I picked the last two gladiola spikes from my garden and placed them in an old milkshake can with lots of maroon mums...then a cluster of bright yellow mums for the top of the mantle and a clear vase full of Japanese lanterns and Autumn, my favorite time of year, is fully present in our household. A colorful, autumnal colored saddle blanket set at a diagonal in the middle of the large living room thrills my heart. Little tiny things, making the environment beautiful and luring the senses and eyes, it's the way I've always been and it helps me love the day.

Yesterday, I made an apple crisp and after being outside watching my husband transplant some more little bushes for me and then walking inside, the assault of appley-cinnamony-nutmeggy odors on such a pleasant day, ah such a delight.

Today, I head to my local doctor to discuss my pain meds. I am off the morphine altogether. Taking Percocet every four hours even when I don't want to, meaning, I will always try to push as long as I can between pills. This way, I feel, it does keep me from being dependent on them, and it usually helps to cut down on one pill in the day. But Percocet has acetomeniphen in it and that is hard on the liver, I guess. So, I'm going to discuss if I can get oxycodone, perhaps a stronger dose of it, and no tylenol in it. We'll see.

I am feeling less of the really bad pain because I am doing so little and not walking. This is nice to wake up in the middle of the night and not have that really bad, hip/leg/foot pain. But the last two mornings, I've been alarmingly awakened with a severe charley horse on my calf. I hold my knee and pray to God that it will pass, it feels so severe. And then the leftover pain keeps me awake from then on. But last night, I had an almost solid 6 hour sleep, a gift.

Don't mess with your compression

I dodged a bullet yesterday even though I took a bit of shrapnel.

I bent over to the ground to place a little bit of dirt into a six inch hole where my husband had placed a bush he'd dug up for me. A transplanting project I have gradiose ideas about. To move 28 little bushes, each one stem about a foot tall at the most to an area closer to the house where I can take better care of them.

My poor husband! I have so many ideas yet I can't do any of them anymore. He tries to help.

That little bit of bending over (about two times) were enough that I could feel I shouldn't be doing it. I stopped. Didn't feel too badly yesterday but after 5 hours of sleep tonight, I've awakened with burning feet that won't allow me to go back to sleep. They burn like they are freezing, though they are not cold, if that makes sense. And my legs have the "restless legs" thing going on.

I mentioned in the previous post that I sat in cervical traction for 15 minutes yesterday. I really should know better. The traction works (for me) for one thing only: when I'm feeling really strong symptoms, I can sit in it and what goes away while the weight of my head is off of my spine are things that will resolve with the fusion, and are related to the instability.

But what goes up must come down, and when the traction UP goes off, the weight, all 25 pounds of it, goes back DOWN, pressing important nerves. Dr. B calls it "rebound."

And I know dearly what the weight of the head feels like. While in the BIG invasive traction deal in NY last November, I hung by pins in my skull with 45 lbs of traction pulling it up, and when they took it all off and I was left sitting normally, no traction, it felt like someone had a 50 lb feedsack on top of my head. IN fact, I asked the technician, what did you do, put all that weight ONTO my head? He laughed and said, "No, you have no weight, no traction now."

So, I am waiting for meds to kick in so I can go back to bed. I am so thankful that, as I go through this, I have such a great partner in life, and also, that I do not have small children. I know women online (they have instability not due to broken necks but due to a connective tissue disorder) who have little children and they deal with all of this. I can't imagine how. God bless them.

A better day

After a couple of posts like the most recent, I realise I need to write here that I am feeling a tad better today. I'm very weak, I hurt when I bend over (like to fill dishwasher or get clothes from the dryer), but on the other hand, I don't hurt near as bad as yesterday.

Today, we went for a short drive into the forest. My husband is picking up big rocks and making a stone wall in front of our raspberries. The woods were so lovely and near the spring, the aspen were bright gold.

When we got home, I didn't feel so hot, so I sat for 15 minutes in the traction, then I laid down for a nap. My two dogs joined me, and an hour later, I woke up from such a sweet sleep. I felt no pain, my hound dog was nestled up close to me (and the little terrier x doxie was nearby) and I felt very clear headed. I am imagining it is the traction effects. And things like this help me to nudge forward in planning the surgery.

More hard stuff

Right now, I am feeling incredibly well.

Last night, I took some new medication and I slept wonderfully...never woke up with pain, even in the morning. It's something I am just not used to.

We drove to our shopping town, after first stopping to pick up another prescription for Percocet for me at my local doctor's office. I did not wear the CTO vest. I wore my old Aspen collar, with an iced gel pak under it in the occipital area. I also put another iced one in the cooler in the back of the truck. I wanted to feel lighter, I guess, than I do wearing the CTO. I also feel so weak in the arms, and taking the CTO on and off, it gets old.

Yet, I could tell that I was experiencing a lot more movement in the pickup as we drove down the hill to follow the Columbia River and head west. More than I feel while braced in the CTO. But I leaned back against two mittens I'd found behind the seat and fell asleep listening to Rush Limbaugh.

In town, we had a few stops besides the pharmacy, but getting in and out, it was wearing and I felt so sick to my stomach. Was this due to the rocking in the truck, bones pressing brainstem tissue inside my head? We stopped to eat and I ate more than I wanted to, but it seemed to be what my body wanted to settle my stomach.

Heading home after grocery shopping, I had put the cooler ice gel pak under my Aspen Collar, and I looked up at the Columbia Hills, very large grassy mountains with pockets of pines. I thought of lying in a grove of pines on a bed of pine-needles and never waking up, and I loved the thought.

We got home, I opened the gate at the bottom of our driveway and then could barely make it up the slight hill to the house. Inside, I quickly set up my "over the door" traction unit, and sat in it for 15 minutes at 8 lbs. While the weight of the water was lifting the weight of my skull from my spine, I never let on to my husband how badly I felt. He asked if I was okay and I answered yes.

But I was bawling in the traction unit. Crying for how badly I felt all over and just what I felt was the image of me in this traction unit, and noone knows.

Imagine waking up every day for almost five years and having the flu: the weakness, the soreness, the achiness. Add into that, you galfriends, the worse period you've had, the deep nerve pain deep in your hips and legs and waist. That's what I've had...and more. And it's wearing me out.

After slipping out of the unit, I laid down on the bed, thinking I'd sleep. The dogs jumped up to join me, but sleep was far from possible. I thought again of a bed of pine needles and never having to leave them. I cried and blew my nose and cried again. And I begged God to take me.

I can't remember having done this ever before, but I begged for Him to take me home. I could finally see good in my being gone, not only an end to the suffering, but my dogs could have someone healthy to walk them; my husband could find someone healthier and not have to worry about me (and I wasn't thinking these things in a martyr sense, more in a pragmatic way that was perfectly plausible and sensible to me); my son is married and will be well cared-for and would no longer have to think of me getting worse.

Then I started to feel bad enough that the thought of the Invasive Cervical Traction done at TCI sounded good to me. I could handle it. Bring it on. The idea of surgery and rods in my head and a halo for months, it all sounded good. If God didn't want to take me, then please let me proceed with the surgery. I started to think of emailing Dr. B tomorrow and asking him to set me up a surgical date, good bones or not. I'm there. I can't take this anymore. Let me die in NY on the operating table or whatever, it doesn't matter. It all sounds better than this, the way I feel right now.

I laid on my side and my little hound dog laid his long, Dachshund body right along my spine, the heat of his body warming my back right where I needed it. Perhaps the effects of the traction began to work, I don't know. I could not sleep, and so I got up, stuck a portable fan right up against my face to bring air to my lungs, and sat at the computer doing the easiest level of solitaire, intentionally diverting myself. My suffering continued for another hour or two, but eventually, everything sort of leveled off. I sat in my recliner in front of our electric fireplace, bundled up in a comfort blanket, looked at the trees outside the window and started feeling much, much better.

Thank you, dear Jesus. Thank you for the good moments, for the times of feeling almost normal. Thanks that you do not always answer our prayers.

I am thinking I will continue watching this, and if I keep on having such bad episodes, I will go ahead and ask Dr. B about proceeding with surgery.

I also had a great idea, I think, in the midst of my suffering. I think I will ask my local nurse if there is a nurse here locally, connected to a home nursing program or hospice program, who perhaps could go with me to NY for my surgery and back. I think this is a great idea, she can get to know me a bit on our trip, and she can watch over me in the hotel room when we must hole up for a few days post discharge. She can watch over all my medications in the hospital and really be there for ME. IF I can get work comp to pay for such a thing. This is something I think would really work.

It's funny the progression one goes through. When I first moved here, I dreaded the thought of "only" being a gardener (when my lifelong calling had been horse training). As time went along, I learned to settle for gardening, and learned to love it and allow it to be enough.

Then, more recently, I have not been able to garden. So, I hope for feeling well and yet to be able to keep up my house and enjoy the reward in that.

Now, I am praying for and will settle for just feeling okay HOLDING STILL. Either in bed or in a chair, or even in my CTO. Just to feel okay and not suffer while BEING, I'll settle for that, you can be certain.

The whole story

Okay, my dear friends, the one who know me personally, please do not freak out. I am fine.

Last weekend, a man fell 45 feet as he climbed up a steep trail at Triple Falls near Multnomah Falls in the Columbia River Gorge. A rescuer climbed down to him in time to see him take his last breaths.

Right now, a hiker is lost on Mt. Adams. He inexplicably left his sleeping bag on the ground near his car in the trailhead parking lot. This will have been his 3rd night up there. He is dressed less than ready for snow and cold.

And I, in the midst of pain, think about this. I think about all the time I have spent in the high country with my horse. How I did not fall and be injured or die up there.

My nephew said, when he called right after my injury, "Aunt, how many thousands of miles you have been through the wilderness alone, and when you get seriously hurt, you are only a few yards from your house!"

But, I, in the midst of my pain, think of those people who die on the mountain. And I think it's not a bad way to go. I mean, it really isn't. To succumb within minutes of falling to the effects of your head bouncing off of rocks, is that really bad? To perish in the beauty of the high country, with hypothermia overtaking your mind and body (I have experienced this and remember it very clearly. It's very euphoric), ah, there are worst ways.

And to not have to undergo recovery, treatment, pain that never ends, stares from people in the grocery store (today, I went thru the market, and as I rounded a corner in my CTO vest, I surprised a young mother in the middle of the aisle with her young son in the basket seat. She surprisingly jumped and said, "Oh, I'm sorry." Over what? No one jumps simply because they need to move their basket a foot for you to pass. I know what happened. She turned around and saw me in the vest and it spooked her.) To not have to endure surgeries and added pain, not have to go through fears of "will this surgery fix me or make me worse?" It's not all bad.

Of course, my reasoning tells me truthfully that every tiny second I survive to be with my husband, the love of my life, is worth it all. And to be here to have seen my son married. Yes, it's worth it. But to avoid all the years of battling pain, battling the brain, it's not a bad thing. It didn't happen to me, I am grateful for that, but I am also cognizant of the fact that someone perishing in the woods, there are worse things, far worse.

I'm sorry if this is hard to read, but the story is not honest if it does not include all of the reasoning, all of the thoughts of the one going through the journey.

I am better today, I took a bit more meds after a really bad morning, and got to feeling better. This is the deal. I need to learn to be someone new. Someone who is just happy not to hurt. That's it, pure and simple. I need to remember what that pain feels like and then not do things that causes that pain to flare up. I need to be the person who will save my energy and create pain-less (not free from pain, but having LESS pain) days to take drives with my husband. I need to somehow fashion someone new. Someone who is not worried about her weight. Who will not give into temptation to climb a ridge, clean a carpet or try a leg lift on the floor when I suddenly am overtaken by the "old me."

I can do it. I have to do it. With the grace of God, I will do it. If I'm here, then I will work the hardest I can to make it endurable.

What a day!

Yesterday was a sweet day. I felt relatively good, except for episodes of nausea and the usual stuff, but I've grown well-used to trying to ignore those and hope, in ways, they will pass away. The nausea, which often comes when I'm in the CTO and in a car or moving vehicle (plane or boat), often is settled with a granola bar or cookie which I try to remember to keep on hand.
I also learned from my sister that gum can help, though it is hard to chew when one's chin is shoved up hard against the part on the brace designed to do just that. But I do try gum at times, too.

I think the nausea happens because I don't have that flex and give at the neck while wearing the brace. So, the horizon looks floaty, plus looking through bifocals which are usually at the wrong level for where my chin is being held. In the car, I could use a 3-point harness, I suspect. I can't fight gravity around corners with my upper body because of being held competely stiff "up top."

At any rate, it all combines to cause me to feel nauseous and a cookie will usually help. Which accounts for why I can't lose any weight, but that's a different story.

Speaking of harness, I've begun to think of my CTO vest as a draft horse harness. As if I need to put it on before going to work. This reasoning helps. For years, I worked with drafts, and slung heavy leather and steel harness parts up over their backs almost every day. If they could stand for it, I guess I can. Besides, it might just be karma.

We drove down the Gorge using back roads which allowed us glimpses of fishermen on the "wild and scenic" river and hunters standing around campfires, clad in orange vests and caps and tales of missed shots.

By the time we stopped for lunch in a mountain community, I was pretty woozy. But lunch did the trick and I popped a pain med and started for the first time in the day to feel like "this was a fun thing." Next, we visited a small antique shop, one we'd visited before a few times.

Wind River Trading Post, I have to hand it to you for being the best antique store ever. Your 2 medium-sized and unassuming rooms (the sign on your door reads you've been in business there over 25 years) are clean and dusted, items are priced and I've never seen such organization! Hawaiian items such as an old Don Ho album, paintings with palms and pretty hula girls, beaded leiis, all are displayed in their corner, while down the aisle are all the cowboy items, then well-marked and lovingly-cleaned are shelves of tools: wrenches and apple corers; Model T wrenches; hand drills; horseshoer hammers and old cans of grease and multi-oil.

Only a good, old western jacket or two hang in this place, no junkie clothes or paperback books to take up the space where "good stuff" could be displayed.

I watched a couple of deer hunters go through quickly and pick out several dainty-looking dishes and lamps, gifts for the wife left at home, no doubt. Rusty thermometers which hung once on back porches now lie on shelves with $1 price tags and announce that it's a chilly 50 degrees in the store. But, over by the blazing pellet stove, it's not too bad and a well-worn leather chair faces the flames with piles of old magazines on the floor beside it.

I can well picture the old man who owns and runs this place to spend long winter days comfortably ensconced next to the stove, head nodding once in a while as he pores over tattered LIFE magazines or meticulously organizes vintage post cards and family photos into tabbed albums.

We liked him so much, we both decided separately to spend $5 on something whether we wanted it or not. I found a "what looks to be old" rusted cricket (like the bug) toy for $6. My husband liked a piggy bank he found for $6. A lamp with a moose on the base for $10 (we only had $9.75 in our possession by the time we bought that and the kindly proprietor said that was good enough). Our total added up to over $30!

Happily, we drove home along the banks of the Columbia, strong winds causing ocean-like whitecaps and inviting a myriad of windsurfers to enjoy the Sunday. Taking another back road home, we were treated to the sight of 5 wild turkeys by the side of the road. Once home, we unveiled our treasures, which had been purposely wrapped in local newspaper by the knotted hands of the old guy at the antique store. Oh, by the way, my husband mentioned that in talking with the gent, he learned that he is 3 years younger than my husband!

A lovely Sunday. We had spent $30 on a lunch at a local's place, the food was great, the atmosphere the best as a table-full of Yakima Indian girls chattered away loudly from their chairs near the wood stove and hunters stopped for a cheeseburger before heading back out into the chilly woods.

I was just so mad...

Writing this is hard.

Yesterday morning, I was just so mad. Oh, I held it at bay so the world would not know (the world being my husband and our two dogs) but I was just frustrated and mad. My husband feels horrible, has all-over pain which keeps him in the recliner much of the time and sometimes contributes (like it does to me) to a depressed state. And with all the economical crisis news on TV, people losing their homes, questions whether we will be able to keep our home, whether our loved ones will have a home, whether social security and disability will stay solid enough to help us through these painful times (they are the only income we have), well, it's easy for it all to boil over sometimes.

Even though we have faith. Even though we appreciate the sky and the clouds and Fall colors.
Even though we know God has a plan.

But it was more than that yesterday. I was just mad at my brain and at my situation and fretting about a surgery I'm not sure will help and which could make me worse.

So, I was feeling halfway good, given the level of narcotics in my system at that moment. I asked my husband to go for a walk in the woods with me, but he felt bad and sad. So, I went anyway.

With two exuberant dogs on leashes (bad idea), I bundled up in a warm jacket, gloves and winter cap and headed across the road to the deer trails which I have not visited in months and which always lift my spirits. No collar for me or brace. I just wanted to be normal and okay for a while.

Following deer trails down to the dry creek bottom, I thought at first (and wisely) to turn toward home, but I was bundled up with frustration as well as warm clothing, and I stepped across the creekbed where the trail immediately became steep, climbing a hill to the ridgeline on the other side.

I switch-backed up, with dogs pulling forward, getting hung up in their leads (they have not been walked in a long time) and stumbling about my feet. I took my time getting to the top, stopping to rest and deal with these oxygen/breathing problems I've been talking about (I know, I'm stupid). At the top, I walked eastward in a direction I had not walked before and found lovely
Ponderosa forests, new pinecones on the forest floor and lots of pine needles freshly shed from the pines above. My time was scarred a bit by the tussling of the dogs, but it was still glorious, the golden and russet colored oaks and the very brisk mountain air all feeding this secret little spot inside of me which has always been fed by the high country and new trails.

As I headed home, I knew I'd made a mistake. I'd come too far. I had only come perhaps a half mile, but it was rough going and sometimes steep. And the dogs added their complications with my back and tethered cord surgery area all screaming in pain as I bent time after time to untether the leashes and limbs of my Dachshund-cross buddies who wanted so badly to sniff rocks and trees and bushes for the signs of transient coyotes.

I stumbled on home, in SO much pain and so weak. I could barely bend down, and in such pain, to deal with the dogs and once, Mickey's snap came loose and he was suddenly loose along the road!

I got home, cursing myself for allowing myself to do much more than I should. Somewhere inside of me, I still have this thing that thinks I can push past hard, tired, steep, cold, pain and I will be better and okay once I push past it. That was okay for most of my life, but not now.

Last night and today, already, the neurological pain is reminding me of my folly. Was it worth it? Not really. I should have stayed home and allowed myself to continue feeling well and to keep on healing. So, I'm kinda mad at myself for giving in to the Siren's Song of the wistful trail.

This morning, I went to the local hospital for a CT scan, follow up, of my lungs. This is just an annual follow up for some lesions they found last year on my lungs. I am expecting no problems.

I am now realizing that morphine is just not for me. It causes me to feel too sad, to cry for no reason, and it isn't helping that much with pain. I am going to start weaning myself off. Which I've already been doing and have seen "some" improvement with the breathing issues.

thanks for reading. Here's praying for each of you reading this, and for our country.

Breathing is not an option!

I am having escalated problems with an old issue. Since my injury, I have experienced slight problems with breathing. Usually, it was the feeling that diaphragm is sticking when I'm asleep.

I would feel like I had simply stopped breathing on the expiration phase, and my diaphragm had not gone on and taken in the next breath. I woke up out of breath, realising I needed to breathe, and then cognitively taking in a breath to get things going, which was pretty uncomfortable to do.

Now, I am experiencing something new, yet it seems along the same lines as the apnea I've had. I breathe out, then on breathing in, I take a normal breath in, not filling my lungs all the way up, just normally breathing in, but something stops me after I've taken in a bit of a breath, and I can't breathe any air out or in, then my instinct is I have to continue breathing ALL the way in, deeply filling up my lungs before I can comfortably let the air out. It's hard to explain.

My problems used to be only at night. I started sleeping with my CTO vest on and it seems like the breathing is much more normal and comfortable then. I can only stand the CTO being on through half the night. I must, subconsciously, press down hard on the chin brace which, to me, is a sign that I go into a natural position which is bad for the compression of my brainstem. I might fall into a fetal position of sorts and bending the neck/head forward is compressing the brainstem as it passes through the "now too narrow" area of my C1 (according to my doctor in NY). Difficulties with breathing and apnea are definitely signs of brainstem compression.

Today, however, this breathing problem is very pronounced while I'm awake and standing, even just doing dishes (thought I know that doing dishes means leaning over time after time to load the dishwasher.) I can be doing what feels like "no" activity at all, and I breathe in shallowly, and something stops my inspiration...I can't expirate either...so I go ahead and take a deep, deep breath, something I didn't think I'd need and didn't intend to do.

I am now on MSContin (extended release morphine) 30 mgs, twice a day. I heard from my pharmacist that morphine can repress respiration. So, this morning, I took only half a dose and will do the same tonight. Although I felt the MS Contin was very good for the pain issues, I might be seeing that it is exaggerating the issue with breathing that I have.

I am hoping these "in your face" breathing problems will go away. I don't want a problem with my lungs on top of brainstem compression!

But as I've written before, I am really lined out in my mind to have the fusion/halo. I remember the picture of me in the invasive cervical traction halo in NY last November and how young I looked! And I know that I was in a lot of pain and had just gone through what felt like incredible torture before the picture was taken.

A year ago July, I had a very bad bout of food poisoning. When they CT'd my belly, they found lesions on the lower part of my lungs. I am to have my lungs scanned once a year now, just to keep an eye on the lesions. I have my appointment for this Friday to have the scanning done. I don't see this being connected to my breathing problems, I'm not sure why I feel confidently that it is not. But I'm glad I'm having this test done anyway.

If the problems persist or get worse, I will go to a respiratory specialist.

I'm still not me!

A friend wrote to me, asking how I felt about my trips in the last three weeks. She said after her trip, "I'm still not me." I thought, that's it! That's how I feel. Still not me. Just hanging in here until my life settles back into my "normal." I'll write more when I can. Thanks for visiting.

A lot has happened...

Since I last wrote.

On Sept 25, my husband and I flew down to California for me to be seen by 3 "agreed medical examiners." A neurologist, neuropsychologist and an orthopedist. They were supposed to be giving an opinion on what percentage of disability I am at this time, and if I can be moved to "permanent and stationery."

They all said the same thing: they can't make a determination for P&S if I have a surgery upcoming. I guess it was important that I go and see them in person, but it sure made for an "assault" of a month upon my body and brain!

Right now, I'm typing with difficulty thinking and therefore typing. So, I guess I will close this for now and continue writing later, little bits at a time. My eyes feel cross eyed and it is a struggle to "look" right now.

Happy October, everyone!