Wednesday, October 31, 2007

Holding my own...

Didn't want my friends here to think I went off the deep end! I'm still not doing great, but am much better than I was on Monday!~ Still have this swallowing thing going on. Can't do very much. Chest is fluttering a lot still. But I'm here and my attitude is good!

I sort of got word today that work comp authorized my surgery in 3 weeks! Such good news. It's not official on paper, but that should be forthcoming. Thank you Lord! what a great relief.

Sorry I don't have much to write but thank you all for your encouragement and prayers. I can feel them, and they have helped! It's just so good to know people care!

Monday, October 29, 2007

Not worth the space I'm takin' up!

That's how I felt today. I don't know why it hit me so hard today, but probably because I spent a careful 45 minutes yesterday doing a few outdoor things. Very low key. But last night, had two episodes of burning, painful calves waking me up to go to the bathroom.

Then today, what I can only describe as an effort to stay alive. It's brainstem stuff, some of my readers know what I'm talking about. My heart jumped around, inconsistent...breathing seemed like something I had to keep after myself. Diaphragm seeming to do calisthenics in my lower chest. Swallowing muscles were lazy, not moving food down very well. Yes, the back of my head and neck hurt, but not agonizingly so. I laid down often and just felt like I was takin' up useful air someone else should be using!

My husband and I can see that the fusion surgery needs to be happening soon. I'm getting worse. But first, the Tethered Cord surgery.

Right now, the scalp on my head has burning, zinging pressure. Today, my feet were painful and yet numb somehow, and my palms were the same.

I am confident tomorrow will be better.

Friday, October 26, 2007

Friday trail

You walk into a crowded room filled with strangers. Some strange, magnetic pull attracts you to others "like you." Your sense of style is the same, your level of intelligence, sense of humor all are a "match." There is a common ground that might be hard to put your finger on, but it exists just the same. You have a kinship in an unknown brotherhood and conversation flows easily.

You can talk with others, but not on the same level that you can with these people who are cut from the same cloth as you.

I thought of this today because I am this way with the trees, leaves, moss, branches and deer trails. I don't know why, but we talk the same language. I can only guess it is because I was a lonely kid, raised in the woods and I spent a lot of time climbing trees (only later did I become afraid of heights) or lying with one cheek on the earth as I observed ants carrying burdens back to their nests.

Like all of us, I have driven or walked past many homes and impressive examples of architecture, yet I am more apt to remember leaves dancing outside a window on delicate branches; Aspen leaves, coin-like, fluttering; pines almost imperceptibly swaying in the wind. I have forgotten street names and models of cars and brick facades, but the black-speckled, snowy bark of birches and the gooey sap from a climbing tree seen 45 years ago remains strong in my memory.

Today, I felt so weak and shaky but I'd promised our little dog a walk in the woods for two days and felt my word was starting to lose its meaning for him, so I snapped on the leash and we took the little loop of a deer trail across the road from our house. My toes brushed aside small rocks occasionally as I walked, clearing the path a bit for any future sojourns.

After a couple of trips this way, I am familiar with this hardly-seen trail and my instincts guided me as to which turn to take, just as they have done for decades when I traveled horseback. These little paths are covered with leaves and not that heavily used and thus, they are easy to veer away from, but some little nuance of branch, log, bush reminded my heart that here, I should turn right, there I should head west.

At the top of the little hill on the way home, I was winded and encouraged Quincy to join me sitting on the ground behind a big rock and at the base of a Ponderosa. No bed is ever so sweet as one of pine needles. I leaned against the trunk of the majestic tree and gazed through the forest. The highway traffic noise seemed intrusive and loud.

My first thought was that this would be the one reason I'd move, to get away from such drone of tires and pavement. Then, I think, "If these trees can thrive with this noise, so can I. Who am I to deserve better than what they have?"

The forest is humbling and bares my soul. And it is all good.

After twenty minutes, I knew I needed to get up and continue on home. But I didn't want to. Nothing profound was happening, but still, it was just pretty cool to be there.

My dog was ready to go; he'd had enough of this introspection.

And I recited an old favorite of mine by Robert Frost as I trudged with painful feet toward home:

Whose woods these are, I do not know
His house is in the village, though.
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake
The only other sound's the sweep
Of easy wind and downy flake.

The woods are lovely, dark and deep
But I have promises to keep
And miles to go before I sleep
And miles to go before I sleep.

Wednesday, October 24, 2007

Sitting in my CTO vest on a beautiful Fall Day...

Last night, I felt a knowledge creep into my mind concerning the lump on my chest.

Since I've been having small muscle spasms (fasciculations) right in that area and I had thought it was my diaphragm, I thought that most likely, the spasms are in muscles across my chest in that area, and the lump is the definition of a well-toned muscle, like you'd see on a weight-lifters' arm.

I know that one of the things doctors are instructed to look for when they suspect MS is extra-toned muscle. Do you remember not long ago ads on television for a device that would stick to your abdomen and shock your muscles with little electric charges (TENS units) which would tone your abs? Same thing, only due to spinal cord injury.

I stretched the skin really taught across the area, to test my doctor's theory that it is a fold of fat. The lump is still there, but flattened out much more, and less pronounced. I don't believe it is fat...and I have faith it is not a cyst or tumor. When I had the thought that it is probably a toned muscle from spasms that I experience right in that exact area, that thought really settled in as fact, or probable fact, or "Making the most sense." I'm going to accept the answer to our prayers, that this is nothing to worry about, and accept what my oncologist believes about it. At least...for now!

The radiology dept. just called and said my doctor wants to reschedule an ultrasound of the lump done with me standing up. I went ahead and booked it for Nov. 2, the next time I'm in that town (for my pamidronate treatment) but if the lump stays the same, then I will talk to the oncologist at that time, whose office gives the treatments, and tell him I've decided it's nothing to worry about.

Basically, I need to accept in faith God's answer to this, and I need to set up and prepare for the surgery in just 26 days. I still haven't purchased flight tickets because I'm just unsure that work comp is going to authorize the surgery.

As for the heavy pressure feeling I've been having in my chest which is very uncomfortable, last night, I set up my over-the-door cervical traction unit with 8 lbs of water. My NY surgeon has told me in the past several times that if I want to see if a symptom is caused by the neck instability, that I just do the traction for 15 minutes and see if it goes away.

Since I just was having that heavy pressure in the center of my chest, I sat in the traction unit for 20 minutes. Yes, the symptoms went away and I can breathe so much more easily. I did feel a bit of paresthesia in my left arm and hand, but it's gone now.

Usually, I will feel great during and immediately after traction, then I will get so much worse than I started because that big, ol' heavy head of mine is coming back to rest on all the nerves etc. So, this time after the traction, I strapped on my CTO vest, really cinching up the Aspen Collar under my chin. And so far, am feeling better, and not holding my breath subconsciously as much as usual.

Am I tired of all of this? Oh, dear yes! I am so tired of this. I'd love to just be able to putter a little around the house, or take a walk on this wonderful day. But what I want and what I can do are two different things! Just having the hope out in front of me of the surgeries in NY is my survival. And I remember when I did not have that hope. I can't imagine how I would be feeling right now if I had never met Dr. B in NY and had a clear, defined diagnosis and treatment plan.

Tuesday, October 23, 2007

Not much to tell...

First, thank you so much to all of you who have posted comments, who are praying for me, and who are checking here for updates. It touches my heart so much!

My oncologist called this morning to say that the ultrasound found nothing. At first, this does sound like a hallelujah, but...

I told him how the technician really did not ultrasound the lump, which was hard to find with me lying down and the tech not paying attention and only doing the U/S for 30 seconds!

My doctor said that it is probably a fold of fat that bunches up when I am sitting down. I said, "Well, I know my body and this is a knot. And it is much more defined when I'm standing up, not sitting down."

So, he said he'd schedule another ultrasound to be done with me standing up. I can tell he thinks I'm questioning his judgment. I think he feels that some of my symptoms are probably anxiety. I've been down this road before.

He is not "me," and doesn't know my history with doctors telling me, "You're fine! Get on with your life!" and all the while, I had a big non-union fracture of the C1. My past dealings with specialists do not make me accept things easily. Especially if I'm told a lump doesn't exist when I feel it, my husband feels it and the doctor feels it. Does this make sense?

This is what we, as patients, endure, having to make our "care" happen, having to work at self-advocacy, having to be a squeaky wheel when in fact, we are very sick and have no energy for it. Sigh...

Today, I have been very, very weak. I haven't felt up to much. Just the job of getting things ready to go for surgery in less than a month (3000 miles away) and trying to get closure on this new manifestation is enough to lay me low, I guess.

Today, I called L. who will be having surgery in NY the same time as I am. We talked easily for about an hour (our first phone chat) and I feel so much better about going there alone for this. It's not easy...but God has a plan. Just one foot in front of the other!

I keep feeling the spasms in the center of my chest. Not precipitated by anything that I notice, they are flutters that sort of interrupt my breathing. I think they are spasms or respiratory myoclonus and my prayer and hope is that when I have the fusion early next year, it will alleviate these symptoms which are not painful, but are bothersome and tiring.

Monday, October 22, 2007

Update on Doctor Appointment

REally, so far there is nothing to report. But I did go to my oncologist today, he felt the "mass" quite well, asked if it hurt me when he palpated it (it does not)...said that it is not where lymph nodes are (good)...said it could be a "fatty benign tumor." Had me go to the hospital next door to have it ultrasounded. Which I did, and I should hear tomorrow what the report was.

It was the fastest ultrasound I ever had. While lying down, the mass ("on the chest wall", is how my doctor wrote the order) is harder to ascertain. But I pointed it out to the technician, he quickly ran the thingy over it, and took it into the doctor to look at, and then came back in and said, okay, you are free to go.

I would have thought if there was nothing there, that he would have struggled to find something. The fact that it took him about a minute makes me wonder if he found it quickly and easily. He would not tell me anything (the last ultrasound I had, of my thyroid, the technician was very friendly and would tell me stuff, but this guy was very secretive. He said, "Your doctor will call you tomorrow.")

So....I'll keep you all updated! Thanks for reading.

Thursday, October 18, 2007

An Old Rope

The other day, while finishing up my project of staining the railings of our wheelchair ramp in front (it's amazing what you can get done when you do it 15 minutes a day, truly!), I needed a rope or string to tie back some vines that were laced all over part of the railing, revealing the wooden handrail underneath that was sorely in need of stain and protective coating.

I went into our shop and my eyes landed immediately on an old McCarty. A skillfully braided rope of brown and white that once served as reins for one of my bosals or snaffle bits. Alas, some forgotten horse somehow broke it in two and rendered it a poor excuse for a rope.

But old cowboys never throw away a rope, even if it's been tied less than gracefully back together with an ugly, overhand knot or two. We never have enough ropes around the place and nothing is discarded.

We are akin to sailors upon the sea with our ropes, lines and knots. We have knots we use to tie a McCarty, knots to tie up our horses, Stockmen's knots and Quick Release knots. A certain sort of knot works perfectly for latching a calf's legs together in a snappy fashion.

Individual types of ropes are only good for specific jobs. A nice silk-braided rope is perfect for tying up a hind foot if necessary because it will not rope-burn the fetlocks on a recalcitrant cow rejecting her calf. The lariat you use for catching the newborn Angus-cross to tag it and give it the vital, first vaccinations is hardly good for anything else, being too twisted and stiff.

Some folks like a big, ol' cotton rope for reins, detesting the horsehair treasured by buckaroos. And none of these ropes are appropriate for pulling the truck out of the mudbog by the windmill!

Thus, I took the old McCarty down and as I walked toward the railings and vines, I played out the bite of the line, shaking the loops out of it, even flipping it overhand a time or two to work those twists out. The braids played through my fingers and across my curled palm like the bow of a violin balancing in the hand of the fiddler.

Muscle memory instinctively took control and seemed to say: "I know how to handle this. Let me do my job!" And it was then that I became aware of how much of my life was spent with ropes in my hands. Lunging a broncy colt....feather-light feel on the lead rope of a trusted partner...using just the right kind of "twine" to do just about any job on the ranch.

We never use the word "lasso" or "lassoo" like you hear on TV. We even hardly ever said "lariat." The all-encompassing word, ROPE, worked for every occasion, that is IF the listener had the same learnin.'

If Pete told me to go get a rope from the barn when he had to lash down bales of hay on the back of the flatbed ranch truck, I knew just which rope he wanted. I didn't have to ask. After all, we'd worked together for 34 years.

The old McCarty did the job fine the other day, holding the vines back while I brushed on Thomspson's Waterseal. Savoring the sensation of the rough twists in my hands, memories poured back of the leather-tassled end of the rein tucked through a belt loop as I stepped down from the saddle at a barbed-wire gate. Reaching back for the lead, knowing that it's just plain smart to hold onto your horse when you're ten miles from home and you're struggling with a too-tight gate.

With the frayed knots in the middle of the span, it's a poor excuse for a rope. There's no arguing that I'm a poor excuse for a cowboy anymore. But there's still chores we can do...and once in awhile, I imagine the old McCarty and my paths will still cross. We don't throw away ropes on our place, remember?

Asking for Prayers, please...

I need some prayers folks...

I think you most know my situation. that I have a pre-condition for multiple myeloma. 25% of the people with this will develop into full blown MM. I have a cyst on my thyroid and nodules (considered no concern by my onc.) on my lungs.

I've posted here about pressure and fluttering in the center of my chest the last few days, and last night, I happened to notice a walnut-sized lump in that exact area. Just a bit lower than my breasts, just right of center of the chest.

I called my oncologist and asked if this was something he should take a look at. He called me back and said he wants me to come in on Monday (he'll be gone tomorrow), so I have an appt now to do that.

I looked it up on the internet and frankly did not find much encouraging. If it is infection in a lymph node, you would not see swelling in that spot. And it would be painful to the touch. There is no pain from it, no tenderness, it is hard, there is no redness.

I know Jesus is in control, and loves the prayers of His children, so I'm asking you to pls put up a few words for me. I trust in Him. But also, as I posted here, I am scheduled for spinal cord detethering surgery in NY on Nov. 21, and if something is happening with the MM, all surgeries are off, so I'd need to know. But of course, I want to hear that it's nothing.... I know the Lord hears the voices of His children, so am asking you to mention my name before His Throne. Thanks and I'll let you know.

God bless you each one. God is Good, Glory to His Name! Thank you.

Wednesday, October 17, 2007

Check this out!

This is a 3D CT scan done in NY last January (07) of my skull and neck. Obviously, this is a view of the back of my head and neck. This is what can happen when a Jefferson fracture occurs and the neck is rendered severely unstable.
I was told in NY last January that my skull has rotated backwards, coming to rest on the posterior of my C1.
You can see that here. The C1 is the horizontal bone just under the back of the skull (sub-occiput). It is longer across than all the other vertebrae, in effect it is a washer between the spine and the skull. Mine, as seen here, is tilting downward to the left, when it should be perfectly horizontal.
As you can see, this crossways bone (posterior of C1) comes to a point in the middle, on the top. In this picture of my spine, this point is seen right up under the base of my skull. My respected NY surgeon told me that there should be the width of my pinky finger between the bone and the skull. Thus, it's easy to see that the C1 is digging into the skull, and keep in mind that this was taken with me lying flat in an MRI machine, trying to keep my chin DOWN.

I had previously noticed that my MRIs did not look like others I'd seen, that my nose and chin were more pointing upward than I was seeing in imaging elsewhere (friends' and online). My surgeon told me, before I mentioned I had noticed this, this fact that my skull has rotated backwards.

He said it has also rotated to the left. This can be seen here, where my shoulders were square against the pad of the MRI I was lying upon, my neck is veering off to the left. Follow the center line of all the vertebrae, starting at the bottom. The spine goes up sort of to the right, then veers to the left, all sort of mangled, finally trying to come back to the center. This is what happens when a horse launches you and you land like a lawn dart upon your head! And, of course, the evolution over time of instability is a big factor.
This shows so well why I need the craniocervical fusion, including the extraction upwards pre-fusion. Rods will be placed down almost the entire back of my skull, held in place by screws. The rods will then go down my Cspine to C4 or 5. The CT of Keesha's fusion illustrates what this will look like.
When I tilt my head upwards at all, it's easy to see how much worse the compression between the C1 and skull/occiput is, considering this is how it looks when I'm lying flat and trying to keep my chin down.
Also to keep in mind (for those who are medically-curious): this shows what is happening on the outside. What about the inside? What bones are in the wrong place and compressing nerves and tissue, including brainstem?
The craniocervical junction harbors all the cranial nerves, which are twelve pairs of nerves that emanate from the nervous tissue of the brain.
I post this here so others can learn and for those with Jefferson Fractures in order to see more clearly what can happen. Too often such people are told they will be fine, as was I. I was not fine, and it took 3 years to find a surgeon who truly understood. One of the tools in his arsenal is the 3D CT scan. Isn't it incredible?
By His Grace, I am alive.

Feeding at Nature's Trough

I just took the dog for a walk.

Homer's epic, The Odyssey, portrayed mythical Sirens, whose songs beckoned seafaring men such as his protagonist, Odysseus. If sailors succumbed to the bird-womens' cries, they would never see hearth and home again. If they resisted temptation, the men would live to tell the tale. Such fictional tales of seduction are present in all cultures around the world. At first, the analytical mind might suppose this is true because of such scenarios being passed from traveler to traveler, ever-changing as the stories are told, yet the basis of each tale remains the same.

Today, I think the Siren is present in all written and oral folklore because it is something that is common to mankind. That seductive call that lures us beyond what common sense whispers into our deaf ears. I know why the sailors of old gave in to reckless abandon and thus ended up with ships battered against rocky shoals. I've known it all of my life. And for the most part, I have also given in to that alluring cry.

I've written about it in poems titled, "Lure of the Leather" and "Seduced by the Hunt." And for me, this seduction is almost always about "what lies around the next bend or over that hill."
This is the very same spirit, I'm sure, that dwelled in all explorers' psyches. Lewis and Clark, Coronado, John Glenn, Dr. Christiaan Barnard, and old cowgirls all must wear a cloak of "seeking the unknown, the new trail." It's a cape marred by ragged holes, however, for though it brightly adorns the appearance of each searcher, it doesn't give protection or warmth. In fact, it often causes harm.

So, back to walking the dog. Yesterday, I took him on a short walk in "my" woods across the road and all went well. He's a wonderful companion. And what fills my mind is how he is learning just like a horse.

The little wire-haired Dachshund (with a drop of some sort of mutt-seed thrown in) tugs up ahead of me, and I have to keep after him just a bit so that he doesn't go a different way than I want to go. He's restricted by a 15 foot leash that retracts as he comes back to me. He loves the game of figuring out which deer trail I intend to take.He sweeps back and forth and if he chooses the wrong one, I tug just a tiny bit (like my outside finger on the reins leading to a snaffle bit) and say softly, "Back this way," and little Quincy returns and his little hound-nose heads down another trail hoping it's the one I intend to choose. I just marvel that a dog can learn like this. Another example of making "the right things easy and the wrong things difficult."

All day, I've felt the thing with my diaphragm going on, heavy in my chest. I figured being out in the fresh air would do me good. I was right.

Today, we walked slowly down the deer trail that weaves through the Ponderosa forest, needles carpeting the ground and muffling my tread. Stepping over the 4 strands of old barbed-wire fence that lies a foot off the ground, we gingerly picked our way down to the dry creek bottom, filled with scattered snowberry bushes. I looked across the creekbed to the hill on the other side.

The Greek author, Homer, never penned of a stronger Siren than I felt at that moment. My gaze lingered on the basalt outcroppings above me and I thought, "I can do this. I may pay for it later. No, I will pay for it later. I'll be getting out my wallet and using all my credit cards and all my spare change, you BET I'll be paying for it later, but right now, I'm okay. Come on, Quincy, let's go."

Slowly plodding like an old "been there, done that" trail horse, I made my way up, asking Quincy to wait up for me every five feet. My heart pumped hard and I thought happily, "There's nothing wrong with the ol' ticker! It's out of shape is all." It wasn't THAT steep or that far, but it was further than I've been lately, a lot lately, and it's steeper.

At the top, oh glory! I could see an outcropping that, with a spark of unoriginality, I named Rocky Point. I stepped over to it and looked out over the creek bottom, be-gifted at that moment with a slight gust of wind that tossed golden leaves and whistled through the pine needles, all with a background of our colorful "Observatory Hill" that climbs behind our house, and further, storm clouds racing in from the coast. Now, THIS is feeding at Nature's Trough. This is the nourishment I live for. And I couldn't help feeling like this was almost exactly like being in my beloved high country: rocky outcroppings, threatening storm clouds in the north over the mountains, tall pines and no sound but my own heart drumming in my ears. Talk about a gift! And all right across the road from my house and I can walk to it in 15 minutes in my own painful hobble? Oh yeah alright, God IS good!

Quincy and I stopped to rest on a boulder, then wended our way down quickly back to the creek bottom, caught another deer trail with my little scruffy dog out ahead of me scouting trails. I had to hike the hill back out of the canyon, of course, and by then, my hips burned and I was beginning to notice the foreboding "rocks" along the coast that the Sirens had lured me into, but was it worth it? I'll let you know tomorrow.

How can I complain of my troubles when I can walk like this? So many cannot and even I could not do it, in my mind, until today. And I know I can't do it every day, and I might be so nerve-injured from the hike today that I won't be able to go back out there for weeks. But I went. I am happy.

I used to have to load up my horse in the trailer and drive 20 miles to a trail-head in the mountains in order to get the "high" I achieved today. Yet, somehow, this time last year as we searched for an affordable property to buy and retire to, we were led here. Not even our first or second or third choice. Those all fell through and we "settled" for this place which we thought was too near town. It's amazing, really. In just a few minutes, I'm right where I need to be and I have hundreds of acres to be alone in.

When I die, may I sit perched up on Rocky Point and sing the seductive call of the Siren to other sojourners through this life. It's really not a bad thing to be.

Tuesday, October 16, 2007

Bitter sweet and semi sweet

Today was one of those roller coaster days. Seemed like the trolley car I was in was rumbling on the downhills abit more than teetering on the apex, but it's all just that spice of life.

I was quite emotional all day. I did find out that Shadow is fine and in fact, very happy. Which makes me happy...but makes me cry.

I found out I have surgery lined up, which makes me happy in all ways.

I am pretty sure I've lost a very good friend somehow, which makes me sad...and confuses me. I have done nothing to cause any division between us, but it seems that since I have moved, she doesn't have time for me, is too busy, but I feel that is only part of the story and something else is going on. That leaves a big, empty hole in my heart. This friend was there for me for hours every day after I broke my neck and was suffering from my brain injury. I think of her every day and miss her. This makes me cry.

Then again, the spurs my husband is making now are incredible. This makes him very happy and that makes me very happy and proud. And I took our little dog for a walk through the pine forest across the road today. I loved it, walking the deer trails and thinking of how my life has been completely comprised of trails. Quincy enjoyed the time so much. Tail curled up over his back, the little black mutt-dog was very happy.

I also made semi-sweet chocolate chip cookies. A day that ends with a chocolate chip cookie ends with a happy bow on it. For, all things considered, life is what you make of it. What you make your mind up to do about it. If you decide to mope about things or your situation, then it is a choice you've made. But if you decide to see what was good, no matter how small, you will see the blessings of the day. Like a chocolate chip cookie! think I'll go get one and then go to bed.


I got a call from the surgical coordinator for The Chiari Institute this morning and I have surgery dates! Praise God!

I'll fly into Great Neck, NY on Nov. 18
have presurgical testing on Nov. 19
have ICT (invasive cervical traction) on Nov. 20 (this is a pre-fusion testing I'll write more about later)
Then go into the hospital and have the detethering of my spinal cord on Nov. 21.

I was told to expect to be in hospital for about 4 days and then to stay in the Great Neck area for 2 days, then I can fly home, if all goes well. That would be about Nov. 28.

I'm so excited. The SFT (Section Filum Terminale, the medical term for the detethering of my cord) is a painful, invasive surgery/recovery, but I have heard SO many successful reports. People tell me the first symptoms to "go" are the bathroom/bladder issues, and the leg/foot pain also is alleviated for the most part. I've read women say they are able to go for walks again, as far as they want to. THAT is exactly what I need.

Of course, now I have to wait to see if CA work comp will authorize all of these procedures, but I feel confident they will. My surgeon says they are necessary before having the fusion, and WC has already authorized the fusion.

Here is a neat story! As you readers know, I've been fretting about the timing on this surgery. It was like "I" had MY timeline of the tethered cord surgery so I could have the craniocervical fusion at the correct time (in my mind) and thus be done with the 3 months of halo early summer next year. Howver, I posted here that I'd read in my Bedside Blessings (thank you, Kim) book awhile back that I needed to seek God's counsel about this, and to await his timing. Anything that is done not in His timing would go awry.

In the meantime, an online friend, Grma Lee (yes, that's how she spells it!) was telling me that her ICT and fusion are coming up and wouldn't it be great if we could be in NY for our surgeries at the same time? She was also posting on our support group board to see if anyone else would be there at the same time as she will be.

This morning, when the surgical coordinator called, she said first, we needed to set the dates. She asked when would be good for me. Well, ANYTIME is good for ME! So, I said, "Anytime in November."

She looked at her schedules and then said, "How about Nov. 20 for the ICT and Nov. 21 for the detethering?" I said, "Fine" without even looking. But when I did look at my calendar, I already had the letters "ICT" on box for Nov. 20, and the word "surgery" on Nov. 21. I thought, "Huh? Is this weird? Did I write this down in my sleep or what?"

Then, above the word "surgery", I saw, lightly written, the words, "Grma Lee" and I understood. Those are the same days as her ICT and surgery!! Incredible! And I never write down the surgery dates of those I know online.

I don't have to look far to see more blessings! Grma Lee has already had the detethering, so she can guide me along abit. And she is having the craniocervical fusion, the same one I'll have in early 2008, so I can learn a lot from being with her during this. We can support each other, learn from each other. I don't know what I can do for her, but I'll think of something. Maybe just keep her laughing.

We can hang out together for our pre-surgical testing, and our tractions....this is unbelievably perfect! God is so good!

Incredible story, huh? We're going to see if there is any way we can be in the same room at the hospital.

And to think way back, when I broke my neck, and none of the doctors were getting it that my C1 fracture was "non-union." And I was led to TCI...and asked to help moderate at the Chiari Connection International support group board...and met Lee, who also has a copy of my book. It all matches up and shows God's divine plan. As the kids say (or do they still?), "I'm psyched!"

Monday, October 15, 2007

Monday, Monday

Bet no blogger ever used those lyrics to title her Monday post before, huh?

Well, today had good things about it, but sad to say, there was a whole lot of pain goin' on. When I woke up during the night to go to the bathroom, my feet were horribly painful. This is pretty normal, but some nights are worse than others...and last night was just one of those nights.

Today, we went to Walmart, about 53 miles away, got some more curtains for the living room (needed more panels to match the ones I got on Friday). But all day, I felt such an odd pressure sensation in the middle of my chest. And often, I found that I was not breathing and needed to make an effort to take a breath. Just quit breathing after an exhale, not like I was holding my breath.

Several times, while riding in the truck, I would fall asleep and experience that pain in the brain stuff. I got to wondering if my brain hurts because I sort of doze off and am not breathing, so I'm oxygen deprived. I kept dozing and waking up and it really wasn't a good feeling.

When I woke up this morning, it was from a bad dream. I dreamed that I went to visit Shadow, my horse I left back on the ranch when we moved 7 months ago, and that he was tied up in a stall that was full of manure, and the snow was blowing in on him. I let him out of the barn, and he began rolling and I knew he was colicking. I spoke to the woman taking care of him and she said that I obviously didn't care because I never came to visit him.

I hated that dream. I don't very often dream of my old friend, Shadow, my partner for 12 years. But I miss him every day.

But then there was lots of good stuff. My husband said, as I went to bed last night, that he loved his home and me and our dog and he kept listing all the stuff he loved.

And again, that view out of the living room window is magnetic. I can't take my eyes off of it. The oaks filling the picture, so golden and orangy.

My husband switched recliners with me. The leather one is just too hard on the back of my head. I love the soft one I'm using now, and oh...what a picture I get to enjoy! And I can already see in my mind's eye the barren branches artistically coated with winter's snow.

Life and love are good indeed.

Sunday, October 14, 2007

The Peter Principle or "I shouldn't write at night when I feel awful!"

The Peter Principle, one of the early New Age thinking books, was summed up as meaning "I'm Okay, You're Okay."

Thus, I thought I'd better write tonight that I'm okay, and I HOPE you are okay. After my last few posts, you all might think I've headed for a long walk off a short pier!

I had a great day today. Got my grocery shopping done for the week, and watched some PBR (bullriding) on TV, and then finished up, finally, staining the railings in front of the house. I am not feeling melancholy or blue at all, but we all know that those blues come and go. And this blog is about being open and honest.

I am having a lot of the middle of the chest fluttering tonight. I keep thinking it is the diaphragm and did a tad of research tonight, reading about diaphragmatic flutter (respiratory myoclonus). Probably most people have experienced myoclonus at some point, when your arm or your head or your leg jerks involuntarily. I have this a lot since my injury...and so it does make a perfect picture in my mind's eye to describe these flutters as involuntary spasms.

And it is connected to brainstem injury. But I have simply made up my mind not to worry about it. If I wrote my doctor and he's not worried, not worried enough to write to me about it, then I'm not going to worry either. I'm not a big worrier by nature so I am not going to fret over this.

I can think of lots of things to write about, but I'm too tired tonight. I'm headed off to bed. This week is supposed to be rainy, so perhaps I'll have more time to write.

big hugs to all dear friends

Saturday, October 13, 2007

Brilliant day, melancholy night, a symbolic pillow

Ah, what a day. Just the view out our living room window was enough to suffice me today. The oak tree on the front lawn has finally started to turn color. There are actually two of them on the lawn, and they have stayed green longer than the others that are scattered about our property, I figure that is because of being watered as I kept the lawn green this summer.

The temperature was at least 70 degrees today. I did a little bit of staining on our front wheelchair ramp railing. I have found I can do things by just puttering at doing it. Do 15 minutes at a time. With the staining, I taped a paintbrush to the bottom of a broom handle, put the bucket of stain on the floor of the ramp and dipped and brushed, dipped and brushed. I enjoyed it.

I put up new curtains in the living room, taking down the shorter, off-white damask drapes with valance and sheers, replacing them with country style curtains, on a black, wrought-iron-type rod with matching steel hold-backs. The curtains are a red-wine color and they frame that view of the golden oaks perfectly!

I also tried a little bit of engraving on a piece of brass, with a Dremel engraver. I would love to be able to make some accent pieces and customized plates for my husband's spurs that he makes and sells. It would feel good to be a part of that.

All in all, it was a good day.

Tonight, though, I feel melancholy. I think of some friends who seem to have given up on me, not answering my emails. Some I worked with at my last job and because of my injury, I had to stop working. We were really close. I thought we'd remain that way and I endeavor to keep in touch, but they do not reply.

Guess I feel a little lonely. And my doctor hasn't responded to me at all since I wrote him over a week ago about the fluttering in my chest. All in all, just feeling a little lost at sea.

Right after my injury, my sister sent me a sweet, little tapesty pillow, with a picture of a horse's head on it, and the saying: "Life without Horses? I don't think so."

I really clung to that pillow, figuratively. I would keep it displayed out where people could see my philosophy in life. I remember my first neurosurgeon telling me that I'd never return to riding professionally, and I said, "I bet I do!"

Then, the NY neurosurgeon I have now told me in January that riding for me would be suicidal.

And the pillow began to haunt me. For months, I would turn it over so I wouldn't read a line that I could not live up to. I'd look at it and think sarcastically, "Yeah, right."

The other day, I put it in a box in my closet along with a lot of other little horse things. I'll send them to a friend who rides and has students she can share these things with.

Isn't it strange how an innocuous, decorative pillow could bother me?

My friend online who has so many challenges, medically in her life, was a life-long dancer. I asked her if she could watch the dance competitions that are on these days. She said no, that they hurt too much for her to watch. She knows I understand. I don't watch horse shows either.

How do we survive having to give up so large an integral piece of who we once were? I know it takes a lot of coping skills, it helps if we have a supportive partner or family. Faith plays a big part in it all. But it takes years to master it.

Another friend wrote and described how she went riding with a friend, ponying two colts for training. There was a lot of detail. And my heart just cried, "I wish I'd been there. That was my kind of thing. That was ME!"

Someone else wrote about going to a bluegrass festival and wishing I could have gone, too. My banjo sits in its case in the closet and at least once a week, I think about taking it out, but I know if I do, I will experience some very bad symptoms from positioning my neck while playing. I can't play the banjo anymore...I can't go to festivals....I can't ride even a decrepit old horse anymore.

Yes, there is so much that I CAN do, and I'm thankful. But every once in awhile, I succumb to a bit of melancholy.

Losing those things we love is harder than it looks.

Thursday, October 11, 2007

Symptoms today

Okay, I know I said I was headed to bed, but I just thought, while it is fresh in my mind, that I'd like to list all the symptoms I have been having today. This is for my own records. Today, my husband had a doctor appointment and asked me to go with him. I decided not to because I had the creepy crawly skin all over my scalp and down my neck. Decided I shouldn't be riding in a pickup for an hour.


Prickly feeling on scalp and neck
Extra pain in neck and occipitally
Lancinating pains in arms, paraesthetic itch
Painful aching in calves and thighs
Painful feet
Flutters in chest which stop my breathing
Very weak, painfully so
Difficulty swallowing: pills won't go down all the way, other food moving slowly down
Balance issues
Frequent urination, leaking bladder
Night-time painful burning in hips and calves
Low back pain

With all of this, you'd think I would be a basket case but I'm really not. Perhaps I'm just used to dealing with it all. But something has made me much worse the last few days and I'm noticing
now some things are escalating. I'll have to take it easy again tomorrow, hopefully rest will make things better.

Keesha's CT

In case you didn't happen to see it, if you scroll down the page and look on the right hand side, I just added a new photo, a CT scan of our friend, Keesha's Craniocervical Fusion hardware. I didn't want you to miss it! Thanks, Keesh! (check out her blog at

Telling myself not to worry, but...

something's going on again in my chest...and it's not going away.

Right after my injury, I felt this flip flopping or fluttering in my chest...right in the center. Anyone with heart palpitations, can you tell me if they feel like this? Or are they something different and over on the left side of the chest?

Anyway, I had this 3 years ago and was sent thru the gamut of cardiac tests, wore a Holter for God-knows-how-long, and pressed the button for "events" 20x a day, and lo and behold, the readings came out that nothing was going on in my heart. There were no recorded arrythmias or palpiations. Docs just said it was anxiety.

Today, I have no anxiety, I know that for a fact. But this flip flopping has started up again...just had an episode that lasted about 5 seconds...a long time, at least to me. Any ideas?

Seems to me it's brainstem stuff...I hate the thought of going thru a cardiologist again. Don't want to wear a Holter when I figure it won't register anything. I don't have a good neurologist (the one I was sent to here looks about 25 and she doesn't listen to me...I have osteoporosis and a pre-condition for multiple myeloma, and I told her I did but could tell she wasn't listening...then she prescribed Topamax for me and at home, I read the label and it said to not take it if you have bone disease! My hematologist/oncologist agreed: Don't take it! I just don't have any faith in her). I wrote to my surgeon in NY last Saturday about this but no reply yet. I am having trouble with my emails coming and going, so tomorrow, I'll fax a letter to him. does scare me, a little.

No wonder I'm so weak and tired. God has a plan, I know He'll reveal to me which direction I need to go next.

maybe I shouldn't blog late at night when everything looks the worst, huh? I should be like Scarlett O'Hara: "I'll think about it tomorrow, when I'm stronger."

On that note, off to bed I go. Thanks to all who read here. I feel somehow supported by your
scanning eyes.


The Lost Chronicles

I typed up a whole entry here and folks, I hit "Publish Post," and it was lost, gone into the netherlands of all worthless words, never to be remembered!

Been in some pain (right now a lot) and so I can't rethink it through or type it out, but not to worry, I'll be back soon. I'm holding my own and praying for my surgery date soon. Life is good in
so many

Wednesday, October 10, 2007

Swimming Up Pain's River

First, I'm excited because a reader left a comment and she also has suffered a Jefferson Fracture! I need to learn more about her, but I wonder if she has felt as alone as I have. I wonder if she thought she'd never meet another person who has gone through what she has.
Can't wait to get to know her better. Once of the reasons I titled my blog what I did was in hopes of drawing in others who have suffered with a JF. Of course, I'm not happy anyone else is dealing with this, but if they are, I hope I can help!

Swimming Up Pain's River. Well...

Lately (you've probably figured out) my symptoms are amping up. I didn't blog here for a few days because I just haven't been feeling very inspired. This is not to say that I don't have good moments in each day, because I do.

One of my problems is my memory. And I know we all can relate to that one, right? However, I forget some important things that I have stated and written over and over, I've studied it and I should be able to remember it...but pleasures override knowledge and such "files" get pushed to the back of the drawer to where they are not even present on the desk of my recall!

I'll come back to this in a moment.

Yesterday, my husband and I stained and watersealed (one great product) most of our front wheelchair ramp and railings. I sat on a green, PVC lawn chair with my bucket of product on a stool beside me so I wouldn't have to stoop down to dip in my brush, and lathered the stuff onto each railing. I thought I was being wise. I didn't feel any pain at all and thought I had "beat the system."

We took a long break for our wonderful lattes, then I went back out and taped my brush onto the end of a broom handle. There was just a bit of sealer left, so I poured it into the bucket and with the brush on the long pole, I sloshed it onto the floor of the ramp. Didn't get it all done before I ran out of stuff, but was so pleased with how well my improvised brush worked.

I came inside and was hit with the familiar and overwhelming sense that my neck could not hold my head up. I laid down on the guest bed with my dog, Quincy, and felt such pain in my brain.
By this, I do not mean a headache. It hurts in my frontal lobes very much and clouds my thinking, but not in a dumb-dumb way. Just painful to have a thought. I didn't want to fall asleep because I knew this horrid, swimmy feeling would be enhanced further by sleep.

I slept fitfully for 2 hours, dreaming of pain, waking up and thinking, "Oh, when I drag myself upright, it's going to hurt so badly and it will take an hour to feel back on this planet. I don't want to get up!" so I'd fall back to that dreaded sleep. Finally, I did force myself up and it was a struggle. I've been through this many times, I know the procedure. I also get this feeling when I wear the CTO vest in the truck.

So, what has memory got to do with this? I forgot to wear my Aspen Collar. And I forgot that Dr. B pointed to my odontoid and said that some of my issues come from that bone poking slightly into my brainstem. I just forgot it. I kept thinking to myself, "I wonder why I get this horrid
reaction to doing things. Must be the brain injury." Only many hours later did the proverbial light go on and I had an a-ha moment.

I posted about this symptom/experience on the ChiariConnectionInternational message board, just to see if anyone else there with craniocervical instability experiences this. No one has responded that they have. I am the only one there with CCI from trauma. Or at least the type of trauma I have had, the JF.

Burning pelvis woke me from my sleep early this morning, at 3:15. I got up and took a Norco at about 4 am, when I finally accepted that the pain was not going away on its own. That worked wonderfully, and I got up this morning feeling "like aces!" and have stayed that way til about an hour ago. I went 10 hours without a pain pill. Felt pretty good about that.

Just another day in Paradise, as they say. The breezes outside are tossing about rusty leaves at will. Looks like an opportune time to step outside and breathe deeply. Oh, the sun just broke through the clouds. I'm there!

Saturday, October 6, 2007

Up at 2 with intense pain

It's from the tethered cord, I know. I was in the midst of a very long, drawn-out dream when the burning pain in my calves woke me up. I tried to ignore it, but I know this means I need to get up to go to the bathroom. It does not hurt as bad as a spasm, or charley horse, but it dang well hurts, yet I don't want to get up because I know the walk to the bathroom will be painful and I'll have trouble with balancing my way there.

I also realize that I have leaked quite a bit of urine during the 3 hours I've been in bed. This is another TC symptom. It's not a letting go with the correct muscles and voiding, it's a leaking and sometimes it's worse than others. I knew I had to get up and change anyway, so I got everything done and now at the computer. Waiting for the Norco to kick in and the burn to stop. I pray.

I have considered whether I wanted to add the urine leakage in my notes here, do people really want to read this? And I do worry that some of my friends who are "well" might think I dwell too much on my health, that this blog is a sign of some obsession and is not healthy.

That may or may not be true, but I know that I am only telling half the story here. It would be an even longer, more boring litany if I recorded all that I deal with. My "sick" friends reading this know what I mean, don't you! I'm sorry you do. But it IS a blessing to have e-friends like Zoe, zipperhead, Scott and others who do relate to these words. And then my friends and family who have written and said they feel closer to me for having read my updates, those comments really add a little icing to my day.

Back to the TC. I cannot wait to get this process done and have a date for the surgery. As you can see, a release of my spinal cord at the base of my spine would have to give some wonderful relief. I'm praying so, and praying that the "hoops" and red tape up ahead will be Godly-expedited. I must remember to seek His counsel and to await His timing.

Friday, October 5, 2007

Peripheral vs Central Nerve pain

Peripheral pain is a bummer. It's the pain you experience with arthritis, diabetes, nerve impingement in your joints. It can be never-ending and totally debilitating. I'm not taking anything away from it as I write this.

But I want to record the difference between peripheral nerve pain and pain that eminates from the spinal cord: central nerve pain. As you've heard me say before, I don't really have the words for it, but my lack of vocabulary doesn't mean that it doesn't exist.

EMGs and SSEPs (nerve conduction studies) test for peripheral neuropathy. I had these tests done this summer. Tiny electrodes are placed upon your skin ... or through your skin to test muscle reactions and how fast the impulses given the nerves travel to the brain. They hurt. The electrodes do. And they surprise you when they happen.

I had read in my support group about how bad EMGs were going to be. I was prepared for something really bad. The jolts of whatever charge they use make your muscles quiver or spasm.

But the odd thing was, even though I bled all over the paper sheet covering the table in the neurologist's examination room (she'd previously assured me there would be no bleeding), the pain was just not that bad. It was completely bearable. It was felt like stings or burns, needle pokes or little shocks like touching an electric fence. I told the doctor that none of it really bothered me too much. I believe that was because I had central nerve pain with which to compare the two sensations.

My situation is not as bad as many sufferers I've read about, but truthfully, I experience central pain every day, so those little jolts of electricity or needle stabs were not about to bother me much.

I only thought to record this tonight because, as I was sitting tonight watching TV, I got a sudden, lancinating pain in my right, smallest toes. It straightened my leg out and I felt that direct access to the brain. As if I were having dental work done and the dentist hit a nerve in my toes. It only lasted four seconds, and I can breeze through them now because I know they only last a very short time. But the experience reminded me of the difference between that intense sensation and the EMGs/SSEPs testing.

Yes, those lancinating pains are perhaps just like the dentist hitting a nerve in one of your teeth and we ALL know what that feels like.

But for me, the lancinators are not the worst thing I deal with. The worst thing is the long, deep, black tunnel that my brain can start down, which is always connected with sleep. Going to sleep or coming out of it.

Maybe because I walked across the road to take a picture today, maybe that was the reason I had painful sleep this afternoon. Prior to falling asleep, again I had the heavy, painful feeling that my neck could not hold up my head.

I laid down and had, once again, the sensation that something is wrong with my breathing. Not my lungs though. I can fill them deeply and fine. But perhaps my diaphragm? I can't find any peers who also have these sensations. It is a scary thing, but I fell right to sleep anyway.

And I woke up in that painful, black, brain place. The good thing was that I was lying flat. I forced myself up from bed (it had only been a 45 minute nap) and started supper and that really helped to clear things up. I wish I had better words to describe these events. It is my lack, not our vocabulary's.

Exquisite Reading

I am finishing up a book that I have been swept up in the last few days. I found it on the Loan-out shelf at the cancer center, a bookcase wedged between two recliners where patients come to fill up on toxic fuels which will, God willing, kill off the bad cells and leave some good ones to hang around and carry on life.

The book is called, "Tapestry: The Journey of Laurel Lee." It's a spare book, in a way, because Laurel Lee could describe a situation, event, emotion or thought in one or two sentences instead of several paragraphs. She was the queen of simile and metaphor! Her life was one of those incredible journeys that needed to be shared with the world. I feel like Laurel, who passed into the arms of Jesus on August 10, 2004, has taken up residence somehow within some deep place I own.

I never knew Laurel, but now, I miss her.

Weakness and Glory

I've given up the search for superlatives and adjectives for this glorious Fall weather. I'm just reveling in it as much as my health will allow.

Wanting to snap a photo of our home from across the road, thereby showing the flaming hillside behind the house, I stepped through the dried grasses and trod along damp deer paths. It's not far. I only walked perhaps 150 feet. I snapped the photos.

Then I looked wistfully behind me, back toward the bewitching creek bottom that I had explored briefly last week. I thought to also take a photo of those Fall colors and maybe the pine-needle-covered part of the trail that is guarded by Ponderosas.

I walked another 100 feet to the point where the trail sloped downward slightly. I took two shots, but I knew the one I wanted was where the path entered the mysterious darker woods. I looked and saw the exact place I wanted to record for my personal history. It was only about 150 more feet, down a slightly sloping trail. And I thought, "No, that would not be good. I would pay with some bad symptoms if I tried that."

So, I looked away, back toward our house, but the Siren Song called me back, and like Lot's wife, I looked again down the path, just toward the object of my affection, the piney woods. My thigh muscles ached and my bones all flushed with weakness and though my body sort of tilted in that direction, good sense won out and I turned back up the hill toward home.

I'm down to walking only 250 ft away from my house...and back...and that trip will put me under.

Thursday, October 4, 2007


Loverly day today, Eliza Doolittle!

"All I want is a room somewhere
Far away from the cold night air
With one enormous chair...
Oh, wouldn't that be loverly?

Lots of chocolate for me to eat
Lots of coal making lots of 'eat
Warm face, warm 'ands, warm feet...
Oh, wouldn't that be loverly?

Oh, so loverly to be absolutely bloomin' still!
I would never budge 'til Spring...
Crept over-me windowsill!

Someone's 'and restin' on my knee
Warm and tender as 'e can be...
Who'll take good care of me...Oh!
Wouldn't that .... be loverly!"


If the lyrics above are a bit off, well, I typed them from memory. I used to love musicals and show tunes as a kid. Across the road from the tiny house my Dad built room by room was a great expanse of woods that years before had been logged. Running and skipping through the forest, I would sing to the top of my lungs, arms spread wide like Julie Andrews in a mountain field in the Alps, springing up to a stump to finish the song in a resounding crescendo. I knew lyrics to songs like "I'm a Yankee Doodle Dandy," "Shall We Dance?" (I performed a particularly memorable "stump" rendition of that one, if I do say so myself!), and "We Got Trouble Right Here in River City!" What do kids today do without musicals to provide dance and lyrics in which to express their exuberance for nature and life?

What a loverly day today. We had a dusting of snow on the mountains behind us last night. Mt Hood is now blanketed in a pristine eyelet cover of white that sparkles even more in its setting against the cobalt skies. The oaks here in the foothills are ruddy, yellow and red and the air akin to an effervescent elixir. The scene simply could not be more addictive to gaze upon, and my love for this area we've been led to for our home is multiplied a thousand-fold. There is absolutely nothing about our town, our house, our property, our neighbors and our townsfolks that we do not like. Well, there IS one neighbor who could clean up his yard a bit more, but who are we to tell him?

It is interesting to me that we "fit" here so well. These are our kind of folks and I realise more than ever that we really were fish out of familiar waters in California. People here drive old, beat-up trucks, something rarely seen in that southern eco-friendly state we left. And we love it! They dress in flannel shirts and old, torn jeans (which were not ripped on purpose!) and dusty hats or oily ball-caps. Hair is worn naturally and make-up sparingly. These are our kind of people, just good ol' country folks who work hard for a living and help each other. Though this area sports a year 'round jacket of breathtaking scenery, it has very little for tourists to flock to if they are not into sightseeing, natural recreation... and nothing else.

This leads me to another thought. I've been blessed to have lived in some of the West's most scenic areas: Aspen, Jackson Hole, coast of California and other places of awe-inspiring vistas.
All of those places depend upon tourism and, in fact, have lost their rustic character due to that catering attitude. However, would those visitors who claim to come for those natural offerings still spend time there if there were no "shops?" Where we live now, our little town of 3500 has no "shops" of chi-chi souvenirs or furnishings.

So, which came first, the tourist or the shops?

I hope our community never changes. If my prayers are answered, this county will always be grass-roots, down-home, warm and comfy and inviting as a broken-in, overstuffed chair next to a flickering hearth.

Oh, did I forget to mention that the celery-crisp air is permeated with the pungent smoke from all of our neighbors' woodfires?

Take a deep breath......ah!


Wednesday, October 3, 2007

Post concussion stuff or what?

As I remember from my studies online, the symptoms you have at 18 months post-concussion, they will be there permanently from then on. All the healing and getting better you are going to do must be done within those first 18 months. After that, you are stuck with 'em.

When you land hard enough on the top of your head that you break a bone into four pieces, the doctors feel you have suffered a pretty bad concussion. After my horse accident, I went through six months of speech therapy. The damage done was mild by many comparisons and I am truly blessed to be doing so well today and I know that. But, and there always is a "but," there are many challenges that linger.

One is emotionalism. I am overly emotional. I find it hard to pray because when I sincerely focus in on something or someone, I start to cry and it's something I can't stop. That is why I am up now, at 11:30 pm, writing this. Praying for good things for my son, I was struck with an over-abundance of emotion. And when I cry, I set off a bunch of neurological jabberwocky. Legs burn and tingle, hands tingle and go numb, the scalp crawls, my right deltoid suddenly starts sparking and like fingernails on a chalkboard, these things pierce into the deepest, darkest and least patient part of my brain.

There, right there, is an analogy for Central Pain: it's like fingernails on a chalkboard. Yeah, that's it. Anyone agree?

Lost My Way

Devin posted this on the ChiariConnectionInternational message board and I liked it so much,
I asked her if I could post it here. She said yes, so here it is, and I think some of you readers will understand her words.

Lost My Way

If you listen, I am here. We are the same in so many ways
Please listen closely as I speak at times,
I cannot make my mouth produce the right words, yet they are there.
Be patient with me. Do not assume that today I can conquer it all,
just because I slept all night through.
Walk a little slower because, like a child, I lose my footing, too.
Smile; do not feel that because I hurt
that we all have to walk around in a state of gloom.
Forgive, that I forget as I am not sure why,
I always have the best intentions, I do.
Try to understand that no, I have not become cynical.
I have temporarily lost my way.
Hold out your arms and be strong. I need a rock,
but I also can be yours in a different way.
Pain can change day to day, minute to second.
I am not complaining
I need to voice it
Inside it is still me. I am still fun, I just need to get strong.
Understand that one day, I WILL be the real me again.
Right now I am just trying to get back on the trail
but I have learned so much from the detour

Devin Kalisz

Not a good day...

Cherry tomatoes, Early Girl tomatoes and bulbs of garlic are vacationing upon my kitchen windowsill, stretched out on imaginary beach chairs in an effort to obtain that perfectly ripe tan.

Soon, we will wake up to frost, as even tonight, snow is predicted to fall 1500 feet higher than our elevation at home. If I find a tomato a little bit orangy, I bring it in and try to wrangle one last bit of summer out of my garden.

Perhaps because of yesterday and all I went through, today has not been good. I've felt very weak. Last night, I took my medication before bed, but the gelcap never made its way to the expected destination: my stomach. It clung, I reckon, to some folds of tissue in my esophagus all night long, finally waking me at 4:30. I got up and ate a slice of bread in an effort to coax the errant pill down the trail. Swallowing issues are common in brainstem compression. Finally, at 8 am, I tried some home-cooked oatmeal with Vermont maple syrup and that worked wonders.

The back of my pumpkin head tingles and hurts occipitally and doesn't want to stay up on the "stick" of my neck. The weakness is painful and diffuse. I take Norco every four hours and alternate with ibuprofen. I'm staying inside even though it is one heckuva beautiful Fall day outside.

And thinking? I'm just plain avoiding it!

Tuesday, October 2, 2007

Forced down the dark hallway

I am required to wear a CTO vest when I ride in a vehicle. CTO stands for Cervical Thoracic Orthotic. There is a photo of it on the right hand column of this page.

I can think of two reasons for this requirement: first, to help save my life if we are in an accident. Getting rear-ended or any other violent collision would spell death for me, given the state of my C1 and ligaments. In other words, I guess it wouldn't take much to cause it to break again.

Secondly, the orthotic is supposed to hold the weight of my head up off the compressed nerves of my Cspine. I know that it does something. It has an effect on me and not all of it is good.

Very often, while I am bundled up in the CTO, I feel an overwhelming need to fall asleep. I know from experience what will result from this, therefore I struggle against this magnetic pull. I feel like I am in a POW's cell and my tormentor comes to the door and opens it. I know what will happen when he leads me through that door and I do not want to go. He takes me down a long, long dark hallway with no light at the end. Helpless am I to prevent the inevitable from happening.

What happens within my brain as I slip into sleep, I cannot tell. Once again, words fail me to express what I am going through. I doze in a sort of straight up posture within the vest and apparatus which, with the help of four aluminum rods, holds my head in a position that must not be altogether good.

My metaphorical tormentor leads me down that dark hallway until we pass through a garden of rest and light dreams but next, we cross the courtyard and enter through the doorway to pain that is indescribable. That doorway is the reason I never wanted to fall asleep in this device in the first place. Because, within the walls of the room I enter, incredible torture awaits and there is nothing I can do but deal with it.

What I'm referring to here is the moment I wake up from the light sleep within the CTO. My brain hurts in a way that is nothing like a headache at all. It's neurons misfiring, circuits shorting, eyes that cannot focus, the world and I are not a part of each other. The earth is spinning one way, and I'm spinning the opposite but I do not mean you to take this literally. It isn't like anything is spinning actually, it's a burning, painful (but "pain" is not really the right word for what I feel--it is beyond pain, a hurting in a foreign way) out-of-body experience. I am weak beyond words. My legs and feet are electrified. But my biggest torture, perhaps the "Rack" of all the devices of Medieval treachery, is the misfiring of my brain cells.

I tell my husband at times like this, "I really don't feel good." But he says nothing. He has heard me voice such things several times a day every day for years. He knows that this moment will pass and in a little bit, I'll be okay, or at least, will appear much better to his eyes. There is no way that he can "get it." I hold him blameless.

I know the situation will pass. My captor will take me out of the chamber and down the dark hallway, thrust me back into my cell where I can lie on the rotted floor, catch my breath, allow cells to realign and reposition, and eventually drag myself back up to my knees and onto the dirty cot in the corner.

This must sound quite dramatic to the reader. But I can say with pure honesty that how I'm painting this is not even close to what it feels like to go through. Again, "there are no round words to fit into a square vocabulary." (

I resist falling asleep at these times (obviously, I do not drive. I have not driven since February, when I got the Draconian device). But succumbing to this slumber is not within my control. Something is physically compressed and something neurologically occurs and no doctor listens or tries to understand. I had someone ask my surgeon for me why this happens and he said that many people sleep in the CTO because the neck and head can finally relax when the orthotic takes over the job of holding things up, battling against gravity. But that doesn't explain the painful misfiring that forces me unwillingly into the loneliest of places: a no-man's land where no one has been and no one understands.

The taste of Pamidronate

I had my infusion at the cancer center of pamidronate last Friday, four days ago. When I pushed back the recliner as I watched the clear drip, drip, drip that is supposed to help strengthen my bones in preparation for my future craniocervical fusion, the burning taste of the chemical leached into the back of my mouth and throat. I know the sensation well, as I've felt it several times when being infused with contrast for an MRI or CT scan.

Today, I still have this taste all the way down my esophagus. A sort of slightly-burning presence and a bitter flavor that is not sensed by the taste buds in my mouth, but absorbed into my brain through the esophagus. In other words, I can't taste the chemical on my tongue or inside my mouth, but it's a taste that is powerfully present nonetheless. It creates an ever-present nausea, as well.

I just called the nurse and asked her, and she is going to question the doctor and get back to me. I imagine it is normal, but always think it's good to make sure.

Monday, October 1, 2007

Lancinating Pains- "It's a brain thing"

We who suffer with Central Pain all share one challenge. We cannot find the words to describe what we are dealing with. How can I use words to describe something to someone who has never experienced this?

How can I illustrate to a man, blind from birth, what color the sun is? What words will get the message across as to just what "yellow" means?

One of the CP symptoms I suffer from are lancinating pains. Now, "lancinating" is an excellent word. It has that visual effect right from the start. Lance. A sharply-pointed stick meant for pain or death.

I think that as humans, we all have something that "pushes our buttons." Something in our history has installed a device that when pushed immediately evokes some reaction. Fear. Pain.

That is what a lancinating pain does to me. I can get them in various places and they tend to change around at their will, but I have had a spot on my upper, right deltoid muscle that has had one for the longest time. There is a small skin lesion there, a seeming eruption from the unseen fire deep within. And when it hits, immediately it "pushes my buttons." I used to call it "immediate access to the brain," but learned recently that pain begins in the brain. So, the lance, the spot on the arm, the nerve and the brain are all connected, sympatico with each other and sing in unison a tortuous tune. The lance will fade away until the next time and ice applied to the area does help.

I learned from a friend awhile back that the brain can only recognize one sensation for the same area at a time. Consider your big toe and you stub it on the coffee table and it hurts incessantly. Then, for some ungodly reason, you stick that toe into the glowing fireplace. There will be only one sensation that the brain will assign for that toe, not two. You will not feel the pain of the stubbing AND the burning of the fire. You will feel one or the other and my guess is you'll feel the burn.

Thus, icing helps a lot with these tortures the body and brain dish out. That is, if you have enough ice and are able to stay still long enough to apply several ice paks to the areas in question. But it really does help and I thank God for that.

I've had these lancinating pains for years now. One is very common in my left foot and when it hits, I could easily believe I have broken a bone in that foot. I've broken the metatarsal bone in my right foot so I do know what it feels like. That lancer is just like that, and I have to limp to get the weight off the foot, but then, as steathily as it arrived, it leaves and the foot is good as normal. These days, I go with the flow. I can also say that the lancer in the foot is not the same, not as bad as the one in the right arm.

Giving shots to a nervous dog, one technique that is useful is to scratch the dog behind the ear very vigorously. She will be more aware of the thing happening closest to the brain. This must be the reason why the lancer in the deltoid has a much greater impact than the one in the foot. Time and distance to travel?

What having fun does to ya!

We noticed our neighbors walking up to visit. I had just fallen to sleep when my husband called that company was coming. We had a wonderful two-hour visit with them. I should have put on my Aspen collar, but this is why I didn't: I didn't want them to feel my discomfort and I didn't want them to feel uncomfortable seeing me in it.

Sitting on the side of the dining room table, I looked left and right as different people talked, and I nodded my head, as you do when listening to or telling stories. I laughed a lot, too.

After they left, we drove into town and I forgot to wear the collar again. We only live a mile from town, so I figured I could get by without it. What fun that was, looking to the side out the window and seeing houses and yards that I usually do not see because the vest or collar keeps me so restricted.

Late in the afternoon, back at home, I've been hit with nausea and tremors, losing balance, having chills, and extreme weakness. Gotta stop that partying!

Movin' kinda slow at the Junction...

Only us old timers remember where the title lyrics came from: the show Petticoat Junction, back when all of TV was displayed in black, white and shades of gray. I always remember the gals swimming in the wooden water-tank near the railroad tracks, clothes draped over the sides to suggest (dare we think it!) impetuous nudity, and the sweet Southern belles peeping over the rim of the tank during the song and waving!

Rained all day yesterday and I took the dog for a walk in the dripping forest. Loved it, but paying for it. I think maybe that I can't go for walks. It really irritates the tethered cord. So, in a way, finding the woods area across the road to walk in might be something of a sad tease.

Woke up from the burning hip/lower back pain, so got up. Usually, I do not take pain meds right away when I get up. I wait till I have to take them, figuring I will take less through the day that way. I have friends who tell me that is the wrong way to take them, and my husband tells me this, too. But I have an anvil for a head.

This morning, though, I did take a pain pill first thing and it did help some. I hate waking up and sitting in the living room and feeling that horrid, tortuous neurological malaise come over me, the all-over feeling of painful "offness." When the weight of my skull needs to be carried by my spine and compresses whatever nerves are caught in the way, what results!

I just noticed cars on our road heading for work and slowing down to a crawl past our place. Looking out our window, I spotted the flock of our neighborhood's wild turkeys making their morning rounds. Half the flock is across the road, and some are in our yard, all seeking the seemingly delicious acorns that is the staple of their Fall diet. This year, with an abundant crop from all the oaks here, these "beauty is in the eye of the beholder" birds should be deliciously fat soon. I think they are beautiful.

Yesterday, I had some fun with a rainy-day project. I have a mirror that I bought for $2 at Goodwill, it is about 18" square, just flat glass with a blue-painted border. Using the hot-glue gun, I stuck on pieces of forsythia branches and buttons and old keys, old rings and necklace crosses that had been rummaging around in the bottom of my little-used jewelry box for years. I added little pine cones, an old green-painted hinge, the drawer pull from an antique dresser. I love how it came out! It is back hanging in the hallway now and I stop to look at it often, wishing the reflection of myself in this adorned mirror was a whole lot prettier. Results of a self-hair-cutting adventure combined with dark circles around the eyes stare back at me, and so I move over to the side, where the reflection disappears and I can admire my handiwork of day before.

God bless you today, dear reader.