Thursday, January 29, 2009

a whispering thought

Buckled up tight in my CTO vest, not able to look left or right, up or down, I sat rigidly in the passenger seat of our car as we drove to town to do some errands. The sky was brilliantly blue, even more so since we'd had 12 days of freezing fog previous to this glorious morning.

I studied the high foothills and the snow-capped peaks, the deer trails that latticed their way up steep slopes.

And a selfish, childish part of my psyche thought, "Tell me, O Lord, what is better now than when I could be in the mountains. If I knew what it is, I could be happy in this situation."

And I felt Him answer: "I didn't promise you better."

He promises us a spiritual walk in His Kingdom, and it is true, I am with Him more now than before,

and though He didn't promise an earthly "better..." is, if I am closer to Him.

how my new Neurosurgeon visit went last Wednesday.

I had a "meet and greet" with a NS on Jan. 21. It occurred to me that I had not reported here on how it went. I have a feeling that my "neuro" friends who read this will relate to how it went and how I was treated, and how I felt.

It seemed to be a waste of my strength and energy, but God knows.

I got there and the paperwork showed me he planned to give me ten minutes. He came out to get me and we went straight into the exam room and I told him up front, I don't know why I'm here. He said, I don't know why you are here either, all I got was this appt. form!

I was in my CTO, so I explained my situation, after he first asked me why I went all the way to NY for surgery. I took my CD of my latest imaging in NY (a copy of it) and gave it to him. He took it and looked at it, and came back saying, I see no evidence of the tethered cord they say you have.

And I said, that imaging was done after the filum was cut. (duh! so yeah, there was no tethering in those images)

I'd asked him earlier, have you dealt with many people with Jefferson fractures? He looked down at his papers and said, "Oh lots of 'em."

I asked him if he performed Chiari surgery and he looked down at his papers and said again, "Oh sure, lots of 'em." (My neuro friends reading this will know the point I'm making here. No NS in the world is doing LOTS of Chiari surgeries except the full time specialists. They may do one or two a year, tops. The Jefferson Fracture thing, he might in fact see several JF's a year since he is a NS in a ski town).

Bottom line, he said, "I have no interest in working under another neurosurgeon. I've never done it before and I don't plan to."

I said, "What if I went to NY and had a halo put on and then had problems and needed local help?"

He responded, "I don't know, what WOULD happen?"

I said, "What if I went to NY for surgery, and then had a CSF leak later here at home and needed local attention?"

He said the same thing, looked me right in the eye (obviously he wanted to push this point home) and said, "I don't know. You need to ask your NY surgeon that."

I asked if he would put a halo vest on me if the NY doc said I needed one.

"No. Believe me, people have big wrecks all the time with their halo vests, and I have no interest working under another neurosurgeon!"

I said, "I am online and know many peers from all over the world who have gone to this facility for surgery, and surely they have local doctors who will work with them for small problems."

He said, "I'm not interested in doing it." So, I replied, "Well, if that does happen, and I need a doctor (I said this all very softly, right out of my heart, without any defensiveness or malice), I will have to try to find one who will think....with his heart."

This got his attention and he said, "Oh, if you came to me in an emergency situation, I would not turn you away." (Oh, thank you so much, dear doctor!)

I actually told him I understood very well how this all must make him feel. That I trained horses all my life and if someone called in another trainer while I was working with the horse, it wouldn't work. I understood. I gave him some CCI biz cards, telling him to give them to his many chiari patients (yeah right), I was crying and so I apologized and said I was sorry for getting a bit misty, and he walked out of the room saying, "That's okay. You have a lot on your plate right now."

So, that's that. I cried more in the car. One feels so rejected, I know you all know what I mean, Feeling desperate that if I had surgery, I'm lost when I come home, if I have problems. One good thing from the appt could be that for me, I learned that this is something important that I need to nail down before surgery: who would take care of me locally? I could ask Dr. B if he has a colleague in Portland, OR who might work with him and me.

I had on my list of questions (and believe me, I stroked this NS like a fat kitty cat!) to see if he'd listen to my problems that I've had since my injury almost five years ago, that I feel is indicative of autonomic dysreflexia, a very important thing to know if you have it. He said that was not something he'd talk about, I need to see a neurologist (NL) for that.

I have been to one of the NLs in that office and don't have plans to see her again...maybe I can find one in a different town. Maybe this surgeon got his feelings stepped on a bit, but maybe it convicted him of how big his ego is, and how that big ego is keeping him from truly helping people.

In the end, new NS said he is going to talk to my hematologist/oncologist Dr. Fu to see what he expected from him, since Dr. Fu set up the appt.

Tuesday, January 27, 2009

What the new endo said...

Yesterday, Dr. Madison called me from his office at OHSU in Portland, OR. He talked to me for about 45 minutes. A very kind man.

These are my notes on what he said:

"My global opinion is that stabilization will help you now more than Forteo"
"If you have surgery now, I do not believe the screws would fall out"
"Your problems are more orthopedic than they are molecular."
He will start me on Forteo and that would help a little (and not do any harm) during recovery-fusing stage. He does feel my bones would rebuild and would "fuse" in a bone graft. His words, "Fusion most likely would work."

When I told him they are going to put a halo on me after the surgery, he said, "Oh well, then, it should be no problem at all!"

He says I have mild to moderate osteopenia. He says I might not have been absorbing the pamidronate (the IV trx I had for 18 mo), though pamidronate stays in the system for five years.

I am in a little bit better shape than what he usually starts people on Forteo are, but we both decided I would start the Forteo as soon as insurance approves it and stay on it for 2 years. He compared my DEXA to one I had done in 2003, and said, "You are sorta holding your own, but you are slipping a little."

My labs (he's doing extensive testing, I have 3 more I'm doing right now) are "pretty normal, levels are acceptable, and you tested negative for malabsorption [of calcium and Vitamin D]."

Today I am doing a 24 hour urine collection, will take that in to the lab (I'm so blessed, I have a lab one mile from my house in the hospital in our little town), then on Thursday I do another 24 hour collection!

But Dr. M is definitely doing a thorough workup! I am so impressed with this guy! Imagine how down I was after that DEXA that said my bones were significantly worse and I had lost 8% of my bone mass!! Imagine if I did not push to see a different endo!! That test was all wrong! Dr. Madison called it a "technical aberration."

So...this is all very good news!

And leads me to make my big decision...

I have sent an email to Dr. B in NY to ask him if we can schedule the surgery. I'm ready. And if he doesn't want to proceed right now, then can we schedule me to go see him for a consult. I need to have this all re-imaged and considered and find out if more settling has taken place...and what to do about it.

I'll let you know.

Bits and Pieces

I've been feeling really bad. Lots of pain below the waist, legs, etc. Very weak. And especially feel like it's harder to hold my head up. I lie down several times a day in order to relieve everything, but that position flares up my tethered cord stuff.

Have you ever noticed how much of your neck muscles you use when you turn over in bed, or get out of bed? I knew after I broke my neck. I used to have to put a flat hand on both sides of my head, and manually lift and turn my head to turn over in bed. And to get out of bed or out of a chair, I put my right hand behind my head, cupping the occipital area, and helped carry the weight of my head to an upright position.

Today, I am still doing the same thing to get out of bed. I don't put hands on the sides of my head to turn over, but it hurts to strain those neck muscles like that. There's a lot of pressure on those muscles, you might stop to think about it tonight as you roll over in bed!

I finally bought a medical bracelet, in case I am ever in the presence of an EMT again. I like this bracelet, it's kind of pretty, it's slim, and has about an inch and a half long door that opens up and you can put a folded piece of paper into it, or write something onto a small slip of paper, that an EMT or medical professional should know in the case of emergency.

On mine, I wrote, "C1 frx, severe skull base issues. Do not intubate unless life and death. Do not hyperextend neck. Possible autonomic dysreflexia."

These are the only things I think are most important in an urgent scenario. One of the first things EMTs do is tilt the head backward in order to open the airway. Doing that to me could cause my C1 to slice through my spinal cord, or some other stuff I'm not sure of.

Intubating someone calls for this hyper extension of the neck as well. When I have my surgeries, they have to have what they call "awake intubation." I've heard this is a horror show to experience, to be intubated awake (having the tube put down your airway to your lungs). For some reason, they need me awake to help them do the job right, I guess, but using the least amount of hyperextension. In the OR setting, they give you "Versid" so that you forget about all this stuff. You experienced it, but you have no recollection of it.

The autonomic dysreflexia, I need to have that verified by a good neurologist. I hope, next time I got to TCI, I can have this confirmed, or not. It's a condition that affects people with spinal cord injuries. If you get stressed, in pain, excited etc, your blood pressure goes up. In "normies," you have a message that gets sent up the spine to the brain that tells the brain that the BP has spiked and to slow down the heart, get the BP down. In some spinal cord injured patients, this system is interrupted and the message never gets to the brain. The BP spikes, but nothing gets it to go back down.

It's necessary for emergency medical personnel to know this, because they might see a very high BP (I had one spike the other day of more than 181/152. I figure it was more because it took me a couple of calm minutes to get the BP monitor out and set up before I got the reading), try to give me a med to lower it, and I guess autonomic dysreflexia does not respond to regular BP meds. In fact, I learned on one website that people with verified AD should carry a med called Procardia at all times.
I have had several phone calls I've needed to make for about a week. I've written here often about my situation with making calls. It's so hard for me. I think I figured out why yesterday.

When I finally feel pretty good on a certain day, and there are not other things really pressing to be done, I might think, "I feel like calling so and so!" Then I'll think: "But first, while I feel okay, I'll do the dishes and put a load of laundry in, and make the beds. THEN I'll call."

And by the time I'm a little bit into those chores, I feel the neuro symptoms creeping back in, and I know I won't be calling anyone.

When people call ME, and catch me unaware, I so often enjoy the call because I perhaps have not already done any household chores!
I was thinking about how my prayers have changed. My desires. My wants.

When I first got hurt, and for a few years afterward, I wanted to be back to normal. I wanted my normal life back. I wanted horses and to be able to ride again. I wanted to be able to travel, and to perform again. I just wanted to be the normal, old me again.

Slowly, time creeps by and you learn to settle for less. Okay, I can't do my job anymore and I never will, but I'd like to have just one horse, just for me to ride and only at a walk through the woods. Please Lord.

That fades away, and I readjust and think, "Well, I'll be happy gardening. All I want is to be able to take care of my yard and enjoy it. Yeah, that's it."

Things keep declining and dreams start changing, too.

I find myself happy if I can do light yard stuff, and keep my house clean. Without pain. Maybe never have to wear a CTO or collar again, yeah, that too! Yeah, I can give up everything else, if I could have a life with these things in it, I'd be happy. Oh, and being able to ride in a car to travel a bit though the western states. Okay, Lord?

Next, without thinking of it, I find myself adjusting again. Okay, if I can keep the house clean, and drive half a day's drive away (I mean "ride", not drive. I haven't really driven in 2 years) and work in my yard without leaning over, okay, I can live with that...

Dreams get dialed in again. Right now, I feel like, If I could get up in the morning and not hurt so much. If I could go through the whole day without debilitating pain and weakness, I can live like that. I can learn to do with that.

I guess survival depends upon lowering expectations when necessary.

Saturday, January 24, 2009

Looking Back

Today, I "thought" I might try some sorting through old papers in my office. How I love my office! My husband built the whole office system for me, it's rustic and cowboy-looking. I am truly blessed with it. I need to find an old file cabinet at a 2nd hand store, however. I don't have one, and I have my files in old U-Haul boxes, set up with the hanging folders end-clips over the sides of the boxes to hold the folders.

I found two, large 4-subject notebooks filled with journals I'd written from 2005 through late 2006. I had hoped to read a journal entry in the later one that would tell me the last date I rode a horse. I don't know when it was because I kept trying to ride (I'd ride, but would go shorter distances and then pay dearly when I got back) until I saw Dr. B in NY in Jan. of 2007, and he told me that riding was suicidal for me. "If you fall off, you die." I went home and never rode again. I've only truly been tempted to break my rule once, and that was last summer.

I read a few entries in my journals and I became a bit blue after reading my words. Because I could see true evidence in front of me, in my own handwriting, that I have been suffering pretty much the same way for far too long a time! I was better off back then than I am now, I could do more, but the perspective was the same.

April 2005..."much of my work is at ground level (landscaping) and when I work bent over, I feel energy sucked out of me, I feel headaches and lightheaded."
May 1, 2005..."Didn't sleep that great and felt wide awake with looping thoughts, so decided to get up early and write. I guess I'm upset that even after more than a year, I am still plagued by so many problems." (My injury was April 9, 2004)

As I read through the entries, I'm seeing how confused I was all the time about what exactly was wrong (the docs knew I had suffered the C1 frx...but were telling me it had healed straight and fine...)

May 16, 2005 "Later in the day, felt very fatigued all day. At times, I felt shaky. It seems like I am right back feeling the way I did before." (After my injury, I convalesced 7 months before being allowed back to work (I begged to be sent back to work) training horses. That would have been in about Nov. of 2004. Back on horses, the movement of the horses caused chronic flare ups in neurological symptoms, but I couldn't reason through that because I was being told everything had healed fine, and sometimes was told my symptoms were "emotional." At this writing, where I'm saying I feel worse than before, I'm saying I am feeling worse than closer to the injury date! Before I went back to riding horses. Though at that time, I didn't really understand the impact of riding upon me.)

As I read during this time, I'm amazed at how much I was doing, and to ME, I was doing so little! I'd always worked so hard and fast, loved working, and so as I listed the things I'd done in a day, to me, I was doing little, and I was wondering why I was getting so tired.

May 17, 2005..."I started off kind of okay. Did some housework and practiced half of the May 28 set [I was in a bluegrass band]. I did feel a bit weary, but went out and worked Jedi [the horse I was riding when I broke my neck] a little bit. I was so happy with his willingness and how he's progressing.

"Then I cleaned corrals and filled fly traps and watered fenceline plants. Came in for a quick lunch, then went over to the orchard, put up "Scare Eyes" and mylar on cherries and almonds [to keep birds away] and treated lake [for weeds].

"Came home and painted some on the wainscoting. Made green chile for supper, but started feeling worse and worse. Sleepy, worn out, yet antsy. I went out to the barn and brought in horses and fed them, and then just broke down. Completely. Cried and cried. Felt so much worse than I have felt in a very long time. I still feel terrible as I write this.

"My head is tight and burning. Off and on, my scalp crawls and off and on, I feel numbness in my lips.

"I need to see some kind of specialist! I want to be well. I was so happy on Friday and Saturday, felt strong and clear-headed. I slipped so easily into my old self."

How my words reflect my inner struggles! I didn't want to be replaced on the ranch. I worried about my job and if I couldn't do it, how we could live without both incomes. I worried about not keeping up with all the chores I had done pre injury. Worrying about the band and letting them down if I could not do a gig with them. Worried about watching another horse trainer do my job, watching them riding "my" horses out my bedroom window.

June 7, 2005 "By the time I came inside from mowing weeds, everything seemed to deteriorate. While mowing, I had burning pain on the outsides of my upper arms. Later, I hardly had any grip, and my feet were the worst! Weak, especially on the bottoms and at my ankles. Hands weak. Strong burning and tingling in right ankle, leg and foot."

June 15, 2005 "I felt pretty good all day. I did work Jedi, though I felt pretty weak. During the riding, I felt very weak and uncomfortable, sometimes painful. Now, trotting feels painful and tiring, and cantering is worse. I always like to ride a horse "outside" after arena work, usually riding across the river or across the road. Today, all I can muster is a quick trip around the house.

"It is hard to see what you love slipping away."

June 18, 2005
"Hate to report it, but how awful I feel just now. My bosses will be here in 30 minutes to ride. I have Jedi and Shadow saddled and in their stalls eating hay. I am sitting under the porch of the barn where I catch the northern breeze which is rustling through the fruitless pear trees.

"I probably did too much yesterday. I felt good enough to do it all and I felt it needed to be done. This morning, I did saddle four horses and four children took some lessons. I did tell my boss that I was just too weak to stand in the arena [to give lessons].

"Now, I feel very weak in my feet and legs, my feet now are painful and I feel fatigue all over.I feel too tired to even write. Normally, at a point like this where I'm waiting for riders, I'd be "making good use of my time," cleaning corrals, pulling weeds, straightening up. But my legs and feet have progressively gotten so much worse. I do worry that whatever this it going to become worse and worse to where I'm in a wheelchair? "

Back to the present, and what hit me as I read this journal earlier today was: I've been suffering for a long time! That was four years ago, and I'd been hurt over a year earlier. And what I thought was suffering back then, it was nothing compared to today.

What will my journal read in another five years?

more testing...more questions

It's been a rough few days.

Today, besides pain that took 3 doses of oxycodone to finally get under control, I just felt off. My head feels heavy on my neck, and when I sit down to rest, the back of my head hurts as I lean against the soft recliner.

Dr. Bolognese describes the instability in a verbal picture of a pumpkin balancing on top of a pencil.

I spent most of the day in bed. When out of bed, I was restless. Standing up hurt, moving hurt, sitting and resting hurt and in my brain, everything felt off.

Late in the afternoon, I laid down for 90 minutes and when I got up about 15 minutes ago, what a difference. Still weak, but the pain in the skull base is gone, my brain feels clear.

This is my self-treatment every day, lying down several times to take the weight of my head off of my spine. It serves much the same as sitting in traction, except I don't end up in as much pain after lying down as I do post-traction.

One thing new I've noticed is I experience nystagmus now. Officially, after some research, I'd say I am experiencing Spontaneous downbeat nystagmus. Nystagmus is involuntary movement of the eyes. You can see this on American's Funniest Home Videos when they twirl the cat on the office chair and when the chair stops, the cat's eyes continue to go back and forth.

There seems to be various kinds of this condition, some are congenital and some are related to head trauma and various neurological conditions. I never gave it any thought, although I have noticed lately some big changes in my vision. I have lightning flashes off to the sides, I have trouble with blurriness at times (and not at all at others), floaters, and now this.

I know I have it because a couple of times now, out of the blue, what I'm looking at quickly dips down in my field of vision, and then back up. It will go a couple of times. And then it is over.

Lately, I've also had an ocular migraine, something I've had before injury, but not in a long time.

I just read this quote on Wikipedia about pathological nystagmus:
"If the pathologic nystagmus is based in the central nervous system (CNS), such as with a cerebellar problem, the nystagmus can be in any direction including horizontal. Purely vertical nystagmus is usually central in origin."

What I have experienced has been "purely vertical." I'm not surprised that it would be a sign of CNS damage since that is what I have (spinal cord).

I have thought, back there in the ol' brain, lately about going to a neuro-opthamologist. I almost wonder if I am now experiencing some CSF flow issues, with different sensations I've been feeling lately. More pain up on top of the head, more actual headaches, and the vision situation.

Actually, the plan I have formed right now, is: as soon as I get the report from the new endocrinologist, I will go ahead and schedule another consult in NY. I need to talk to my surgeon. I have feared that he will insist I go home in a halo...but lately, even a halo is starting to make sense.

Speaking of the endocrinologist...I saw him on Jan. 15 and he had another DEXA scan done, and also pulled 8 vials of blood. I am anxious to find out what he finds in these test results. I called OHSU and was told that they will mail me the report and results as soon as they come in.

Today in the mail, I received 3 more lab orders from Dr. Madison at OHSU. I can have these done here, don't have to travel to Portland. They are for a 24-hour urine test to test calcium. I'm used to these, I do these every year for the pre condition to mulitple myeloma I have.

Another one is for creatinine, which I would have thought he'd have tested with the blood they took in Portland, that is pretty common to test for.

And the other is another 24 hour urine to test for telopeptide.

I know what the calcium test is for. If they find too much calcium in your urine, then it is evident that you are losing bone either due to bone cancer or osteopenia/porosis.

I feel good about this endocrinologist being thorough, though I wish I knew what the call for extra testing "means." Does it mean he is just being thorough as he makes a decision for me to get surgery or not? Or does it mean he's found something of concern, and that is why he needs to take more blood and urine? I'm not concerned about it, I've been through too much to not have learned that there is no sense in being worried about something I'll not learn until I learn it!

I already had an appointment for Feb. 17 with my hematologist/oncologist for the lab work I get every six months for the MGUS (monoclonal gammopathy, the MM precondition). And I am sure they will test for creatinine then. But on Monday, I'll go ahead and set up to have blood drawn...when I will take in the cute jug filled from my 24-hour urine collection. Such fun!

I try not to get my hopes up. I WANT to think that Dr. Madison has talked to Dr. B in NY. That my labs and DEXA looked pretty good and there's a chance I can go for the fusion. That Dr. M is being cautious and thorough by ordering these extra tests, and that I will receive a phone call soon that will say, "Your bones are great! I talked to Dr. B and we both agree, you are a good candidate for the fusion, so he's setting you up within the month!"

Dr. B told me last May that when I was ready for the fusion, he'd fit me into his surgical schedule within 30 days.

I WANT to think those things...

but I know better than to dream of all.

Wednesday, January 21, 2009

That tender, broken place

"For a broken and contrite heart, God will not refuse."

It's funny how God works sometimes...

Last night, having fun typing up names of horses that for the most part, it's their photos I recall. Horses that, for the most part, are no longer grazing the good, green pastures of earth.

Just now, a close friend who'd read that post sent a poem to me by a tender-hearted cowboy poet, a piece about his father listing the names of the horses he'd known. The poem, perfect in every letter, hit too close to the bone...too close to the nerve, and I know something about nerves.

I started to cry a bit, you know what I mean...that part of you that you call your heart, the Bible calls your heart, but it feels deeper than that invaluable organ, and it, that fragile and very real place inside you that rarely is felt, seems to arise from the center of your brain, not your chest, just like pain, which scientists say starts in the brain, not in the wound. Like lightning amazingly starts in the ground, not in the heavens the way our eyes tell us is true.

Tender-hearted, I left the page that poem lay upon, needing to step away from the precipice of falling into that place, that cavern of what is real and pure. It hurts too much, physically. So, I came here to this blog, to read those horses' epithets again, but God had holy plans.

The music on this site began to play, and Casting Crowns sang their annointed words, "Who I am." And I suddenly stopped reading the mundane words I'd written.

And something tugged at something deeper.

And I didn't step back this time.

I allowed it, I heard the lyrics, the instruments, the harmonies, the power in the notes, the blendings of the strings, piano, drums, all voices coming together in something deep but High.

Deep...but High.

Heavenly music, words about me. I am nothing. I am nothing, my brain cried from behind my burning eyes. I know the truth of that, but to feel it again...I am a flower quickly fading, a wave tossed in the ocean, a vapor in the wind, still You hear me when I'm calling, You catch me when I'm falling and told me who I am....I am Yours....

deep...but high.

Then the next song, Casting Crowns again, "I will praise you in this storm." Listen to the words...FEEL them....t r y

deep...but high

...and holy.

I thought by now You'd have come down and wiped away our tears. Yet I am left here crying, and after I say Amen, it's still raining, and yes, I will lift my hands, I will praise You in this storm, and though my heart is torn, I will praise You in this storm...

My aching throat whispering the lyrics because singing brings pain, my aching arms lifted to Him, worthy, the "maker of heaven and earth," my nose runs, my tears run, my hands hold up my heavy head which my weak neck cannot hold, so that I feel my tears running down my forearms to my elbows, to the desk, and I see myself, being rolled into surgery, that lonely, lonely road down whitewashed, cold halls with staff joking with each other but not with you, not with you, you are heading for no-man's land and uncertainty and it takes faith to do it, and knowing He is there, in the power of these words...

Jesus take the me from this road I'm on....I'm letting go, so give me one more chance oh, Jesus take the wheel....

and words I'd sung cut deep

deep...but high

and voices given by God ring out His praises and, in that tender moment, I thought of you, and prayed that every reader here hears this music, has their volume turned up, hears these words, and no, they may not cut deep this time, but you too will someday be in that tender spot...

deep...but high...

I listened to them so many times when their words held truth for me, but not from inside that deep, tender place that we avoid yet we long for

I prayed, please Lord, let them hear this, let them hear find that deep deep profound place, broken, tender, pure, honest, bare, painful, beautiful, intense, unearthly, surreal yet real, what truly, oh God, what Heaven must be, what Heaven is, this place deep inside all of us, in that brain, where all the time, we think and think and think, and our thoughts own us, but once in a spiritual moment, we touch heaven and it is there, there, behind our eyes...

deep but high

Tuesday, January 20, 2009

The list we can't forget

It's been said that we old time ranchers and cowboys can't remember our phone numbers or our birth dates but ask us the names of the horses that have graced our days, and we have no problem at all remembering an equine partner of 40 years ago.

Last week, my husband and I started listing the names of horses in our history as we drove home from shopping. It's a 30 minute drive and it took all that time and I still think we missed some.

Buckshot, my first horse, a 3 yr old bucksin gelding.
Spacey, a cute little cowpony I owned for one night, because my Dad told me to take him back, two horses were enough!
Navajo Tom, an Appaloosa gelding I showed in Western Pleasure and barrel racing
Bar None, my wonderful mare who helped me set arena records all over Arizona back in the early 1970's
Blue Wing Penelope (Penny), an Appy mare we bought and broke to ride and turned out to be a very trustworthy mount.
Misty, her daughter, sired by a reg. Thoroughbred stallion, a grandson of Man O' War.
Joker, a tough, ugly Appaloosa gelding and a darn good ranch horse.
Jackson, a grandson of a Million Dollar Futurity Race winner at Ruidoso Downs, I broke him to ride at 5 years old.
Hank, an older bay gelding who kept up on the ranch with any cowhorses we rode with.
Rocky, bought for $550 at a horse sale in Las Vegas, NM, and a nice fellow but had lots of "baggage" and never made a good horse, too nervous.
Blue (#1), half quarter horse and half Percheron, he was a good and big rope horse for Pete.
Knight, a black ex-cutting horse that couldn't cut it on the ranch and we sold at an auction where he turned out to be the high selling horse of the day.
Blue (#2), a son of Impressive, he was beautiful like his daddy, but would buck any chance he got, and he got a lot of chances.
Misty #2, one of my best horses, I bought her as a 3 yr old from an auction, where her dark, dapple grey color made her a stand out. What a cowhorse she turned out to be!
Cody, a flashy paint horse with big, pie-pan feet and a great heart.
Molly, a little Palomino mare our son rode many miles. Hard to shoe, we had to lay her down on the grass to "get 'er done."
Smokey, a bay gelding I traded for when we worked on a Wyoming ranch. He was fair...a good boy but not exceptional.
Jubilee, a little black mule we just packed.
Applejack, a medium sized black mule I broke to ride. He was a great ride in the mountains, but once you stepped off, he sure didn't want to let you back on.
Shadow, he was the horse I owned the longest, 12 years. A pretty "Medicine Hat" Paint, he and I became such close partners as we rode more miles than I could estimate in the high country of Washington State wilderness.
Amigo, a 1500 lb. Appaloosa who turned out to have been "loco'ed" (he'd ingested locoweed) and thought yer grandma could ride him most of the time, he was a maniac at the most unsuspecting moments.
Chubby, a dapple gray Shetland pony and
Fancy, Chubby's team mate.
Sugar, a sorrel mare who'd been owned by Kris Kristofferson for the first five years of her life, I traded out $500 worth of yardwork for her, and she turned out to be the most amazing cowhorse I could ever hope for.
here's one whose name I can't recall, a fancy, large Paint pony my husband picked up for $50 at a horse sale in NM, and though he never really worked out well for kids, I rode him a lot leading out dudes and liked him a lot.
Sis, a dun mare who came off the track, I bought her and didn't like her much, so sold her and made a tidy profit.
Another Hank, a big grulla ranch horse
Primo, a black gelding I bought and trained out, sold for a profit, nice little boy.
Another one I can't recall the name of: a nice bay gelding I took on trade for the mule, Applejack.
A nice, safe ride, I'd took him because he'd be good in our dude string. But ended up selling him to a Spanish friend who was 78 yrs old and needed a dependable gelding to keep a check on his cattle.
Oh, another one whose name allludes me, a sorrel gelding owned by a guy named Sheldon, who owed us $200 for hay he'd borrowed. I knew we'd never get the $ from him, so when he offered the monorchid (one testicle) horse that was too wild for him to handle, I took him. In a day, I was riding him down the road to check the mail and soon sold him to a good home as a riding horse.
And a pony whose name I can't recall, we bought for our son when he was six months old! A pretty chestnut color with a blond mane and tail, I guess he didn't hang around long enough to burn his name into my brain cells.
Pete owned a few before I met him, in his previous life. I don't recall those names even though he told them to me the other day...
[I had to come back on today because last night, I thought of another good Buckskin gelding we had awhile down in NM named Pecos. He was Pete's horse, he thought the world of him. Pete started him and I rarely rode him. I couldn't resist, so I counted them up: 36 horses over the years. Not counting the ranch horses and horses I took in to train.]

That's all I can remember, these horses that we actually owned. Soon, I'll add on a list of ranch horses we didn't own, but seemed like ours in spite of a lack of bill of sale. And colts I broke, the ones I can remember. It would not show my respect for them if I didn't name them as well, some of them, at least.

There's not a photo album out of the many, many we have from our 35 yrs of marriage, which doesn't contain at least one horse photo, except those from the last two years.

Monday, January 19, 2009

My theory on breathing: it's not optional!

Since Sept 10, 2007, I have been blogging here. A lot of water has passed under the proverbial bridge since then, and yet, so many things are much the same.

Back on Oct. 2, 2007, I wrote of being drawn into a painful sleep almost daily, but especially while in the car or pickup.

When I blogged about it, it surely wasn't the first time I'd experienced it. In fact, I've probably been dealing with this for a three years or more. However, lately, it happens much more often.

A couple of months ago, my husband and I decided to go see a movie called "Appaloosa." It looked to be a good, ol' cowboy flick, and we hadn't been to the movies in a couple of years. We were looking forward to it.

Before the start of the movie, we were at a discount store and, walking in, I noticed a display of windchimes up and to my right. I wondered if they were on sale, and if so, for how much, so I carefully looked up...and to the right...and I felt a stab of pain on that side at the skull base, and heard a clunk. I continued to feel pain in the occipital area, but didn't allow myself to worry about it, or it to ruin the day.

I took a little pillow into the theater with me, watched a few movie trailers on the screen, and the next thing that I knew, everyone around me was getting up from their seats. The movie was over. I was confused and it was still dark, and I fumbled around for my pillow and wondering what happened.

I remember nothing about that movie! And I never once saw an Appaloosa.

Since that day, I've wondered often what happened. I know I sort of passed out-slept. But what happened in my neck to cause a 2 hour event of it?

And since then, I've found this happening more and more. And also, pain in new, rather significant areas: underneath and a bit behind both of my ears. I know this is the bottom edge of the skull, and I am wondering if I experienced more cranial settling.

Functional Cranial Settling. I have it, and according to my neurosurgeon, it's severe. I didn't get to talk to him about it much, and I have a lot of questions. But it stands to reason that just a very small amount of settling can have impact. Millimeters.

When the skull settles, the odontoid bone of the C2 which points up into the skull through the foramen magnum HAS to go up further. Skull down; odontoid bone of the spine up. It's not rocket science.

The odontoid bone, when it is up where it should not be, compresses against the brainstem, especially when one bends their head forward or backward.

My surgeon told me also that I have brainstem compression "from where the brainstem goes through the C1."

My muddied brain has thought a lot about these painful passing out/sleeps. Naturally I would, they happen every day. I've wondered if they could be seizures but that just hasn't seemed right. Is it cranial nerve compression? Or one of the thousands of things I know nothing about. How I wish I could ask.

However, the other day, it all seemed to come together for me. It's deprivation of oxygen.

My O2 levels are falling because I'm not breathing regularly and when I do, it is shallow. I also find myself holding my breath unwittingly and often.

Time goes on and the deprivation builds up until I rest my head back against a seat, or the recliner in the living room, or the shell protecting the back of my head in the CTO. Perhaps the relaxation of suddenly being supported factors in (which is what Dr. B has said) as well.

But the lack of O2 really explains the way my brain feels. It burns in the temporal lobes, my eyes refuse to focus. One time I had this while sitting at the computer, and my vision started to darken from the outsides going in. Then I had a brown-out in my vision. Which woke me up and I started to breathe more deeply.

Yesterday, we drove to our shopping town, I wore the CTO, and I focused on breathing deeply. I didn't have the passing out thing. However, the position the CTO puts me in causes deep aching pain in my palms and in the soles of my feet and then it just spreads out, making me very weak, and I did arrive home with that.

So...I think I'm onto something here. I need to think more about breathing and breathing deeply. Right after my injury, I had a wonderful speech therapist train me for six months and she taught me diaphragmatic breathing, and I can do that too.

When I've felt it the last couple of mornings, I've forced myself up and walking around and breathing, breathing. It takes quite a while to feel less weak and wobbly, but it does help and also evades the passing out.

And this all might explain why my balance has been much more "off" of late, as well.

This also explain memory problems.

Some might read this and wonder, "Get thee to the ER! What are you doing not at the hospital?" But other readers will relate to what I write, when I say it's hopeless. There's only one place for me to get answers and it is 3000 miles away.

Doctors in emergency rooms do not know what to do with people like me. They would take O2 levels and say I was fine. I would be wishing I'd never gone. I'd be wishing I could get off the table and run home and say it never happened.

I am seeing a new neurosurgeon on Wednesday. God will show me why I need to go. Because I don't want to go. As I've written before, I already have a perfectly good NS, but my hematologist/oncologist wants me to see someone for a second opinion on whether I am ready for surgery or not. I do not believe that any neurosurgeon but the one I see in NY could look at MRIs and say, "Your head is falling off! You need a fusion and you need it now!"

One gets an attitude like that when they have seen other neurosurgeons and been mistreated by them. Neurologists? I give them no respect whatsoever. That is so sad, but for me, it's true. I haven't visited with a NL yet who did me any good. My friend, One Sick Mother, keeps a tab on how many doctors she's seen and she calls them by number. I don't know how many docs I've seen, but only one "got it right."

Maybe seeing this new NS will be good for me in that he can document my decline. But most NS I know, if you are not having surgery, they don't want to see you. Which leads me back to a NL again.

Some of my readers know this spin cycle well.

Saturday, January 17, 2009

Trip to Portland

On Wednesday last, we drove to Portland, Oregon, where we spent the night in a shabby, cheap motel, managed the incredibly tangled streets on both sides of the 405, and found our way to my appointment on Thursday at Oregon Health and Sciences University (OHSU).

An endocrinologist there had been recommended to me by another TCI patient, and this doctor had done well in getting her bones into shape for the fusion surgery, and also had discussed the patient with Dr. B, her neurosurgeon (and mine) at TCI. I felt good going into the appointment, knowing he already was familiar with the type of fusion I needed, and my surgeon.

Dr. Madison was great, speaking to me without condescension, asking many questions which sparked better answers than I had given on the questionairre I'd filled out at home. He cared, he was business-like and he was decisive in a way that really gave me confidence in him.

Basically, Dr. Madison feels that my bones are not "that bad." He feels the report from my recent density scan was in error (I think he called it a "medical artifact"). I've written previously that one statement on my report claimed that I had lost 8% of my bone mass at the lumbar region in less than a year.

Dr. M felt that was "virtually impossible," unless you have a severely aggressive bone cancer, in which case, you'd know that. [Knowing this now, I wonder why such an error is allowed out the door! Why did the radiologist who wrote that in my report not double check and understand that such a classification is likely in error?]

He told me that the lumbar region, in his opinion, is not the best place to determine the density of the bone throughout the body because so much is usually happening in the lumbar region on most people. He feels the hip gives a more accurate picture. And my hip bones look good.

He felt I had been given way too much pamidronate, and that it was not necessary for me to have kept on the Actonel for the last 18 months while I've also been on the pamidronate treatment. I asked if this excessive dose of pamidronate would harm me, and he said no.

I was smitten with him over one particular comment he made. I have mentioned before that one of the benefits of my Tethered Cord surgery was the surprising elimination of my TMJ problems. All of my life, my jaw has locked into a position that would not allow me to eat a normally sized sandwich, because it was too wide. I grew used to it, but in the hospital after my TC surgery, I noticed right away that I was able to open my mouth to eat and not have my jaw lock and not allow me to open any further. I've mentioned this to a few doctors and not had any good theories bounced back. When I mentioned this to Dr. M, he said, "That is probably because you were intubated for 7.5 hours during surgery and your mouth was held open for a long time."

Such common sense is so hard to find these days, and always surprises me when I hear it. That made perfect sense! And I so like understanding the how's and why's of these things.

He scheduled me right away for more labs and another DEXA scan. Before I left, he ventured, "I might change my mind after seeing your labs and new DEXA, but right now, I'd say that your bones are not that bad. That you have mild to moderate osteopenia. As far as the surgery goes, the only way to determine for sure how your bones are in the area of surgery is to take a bone biopsy. I will not do these because they are so painful for the patient."

"I might put you on six months of Forteo shots after I see your labs and scan. In that case, you would come back in to see me in about three months."

I went on ahead to the lab where they pulled 8 vials of blood, then my husband and I got lost, trying to find where the DEXA's are done. This is a huge university with many buildings, old ones and new ones and old ones more recently added on to. Where I needed to go, the building had 3 elevators, but only one, the C elevator, would take me to the floor where the bone scans were done. Eventually, lost in ICU, we were rescued by a kind doctor who led us far out of his way to the elevator that would take us to the correct floor.

By this time, my brain was fried. Too many new people, talking too much, thinking too much, getting lost, following that after the DEXA was done, the technician told me to get dressed and I could leave. I walked to the chair where my clothes were, and put on my shoes and started to walk out from behind the curtain, with just the gown still on. Thankfully, I recognized my mistake before going too far!

We got lost leaving Portland, as well, and ended up going a bit further south than we needed to, but we saw some different communities and streets, and the sky was bright blue with the snow-covered tops of Mt. St. Helens and Mt. Hood shining close by.

Going over to Portland and coming home, except for the times we were in the busiest traffic, I did not wear a collar or CTO vest. Those things just cause me so much "brain pain." I figured I'd survive the trip better without that painful passing-out feeling (I've since figured out, I think, what this is, which I'll address in another post). I just prayed, "Lord, if we get into an accident, let me die outright rather than be paralyzed."

I came away feeling very good about the new endocrinologist. It looks like I might have the option of having the fusion I so desperately need, yet it looks like it could be a year before I could get it done. I like having another year to make up my mind about this, to be sure. I keep going up and down, on a roller-coaster. Like a trainer in the corner of the ring before his boxer is about to step back into the fight, I have been coaching myself and cheering myself on about this surgery.

"You can do it! You'll be so much better! Don't listen to the failed fusion stories! You have no choice!"

Then something happens, and I can't have the surgery at the time I have pumped myself up into expecting. So then, in survival mode, I tell myself the surgery would have made me worse, the Lord knew what was best for me, I just have to get used to not having the option of getting better.

Then...the bell rings, the wooden stool gets swept away, the trainer pats me on the back and I stumble forward back into the center of the ring, arms up and swinging, "You can do this! You'll be so much better..."

Tuesday, January 13, 2009

Letter to those without Chronic Pain

I read this online and thought the author did a wonderful job. I'm sharing it here, along with the link to the migraine site it was featured on.

Now, I do not post this for MY friends and family. I honestly am blessed with loved ones who truly do understand my situation, and who care immensely.

But I am posting this for those who are suffering, and perhaps this letter, printed out, could help your family and friends to understand, if that need exists.

Letter to people without chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

That's what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!”

If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has included failure, which in and of itself can make me feel even lower.

If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.”

I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

Monday, January 12, 2009


New Year's Resolutions

I don't make them.

Because I don't like not keeping promises, even to myself.

But I do make notes to myself, and around the first of the year, I wrote "Notes to Self," in long-hand, seriously, knowing that if I would do these things, I would do better.

Do not kneel down....ever! I've already broken this one, the other day.
Do not shovel snow....ever! You can be a wimp inside looking out at the work that you are leaving your husband to do...or you can be a HURTING wimp, for days and days, inside looking out. Either way, you are inside looking out. I've sort of kept this one so far, though I did "push" a little bit of melted ice with the snow shovel, but that doesn't count, does it?
Focus on what you CAN do instead of wanting to hold onto pieces of what you used to do. Your husband will be exponentially happier the more often you are not in pain. I've kept this one really well. Maybe philosophical changes are easier for me than physical ones!
Wear collar. Several times throughout the day. Collar use makes posture better. Better posture means less Tethered Cord symptoms. Collar assists both head pain and below the waist. Fusion would also do the same, according to Dr. B. The posture is the key thing. don't want to know....I have stopped wearing the CTO in the vehicle and can travel a little bit better. I don't have that "put me into painful passing out thing" going on when I'm not wearing the CTO. I do wear the collar in the vehicle now, that seems to work okay for me. I wear it into the stores...and to the movies yesterday (saw "Gran Torino"...great movie). But around the house...not so much.
Pain meds. Take less when you can. The less you take, the better they work! Embrace pain sometimes and skip pain med so that when you do take it, it works. This absolutely works!
Don't give up on fusion. Think of people you know who say fusion was helpful. Kara, Kathymichelle, Grma Lee, Lisa. You do not have EDS. Many people, if not most of the ones you know online who are struggling post craniocervical fusion have Ehlers Danlos Syndrome. You have instability from severe trauma. Your situation is different. Don't forget it. Absolutely!
Quit Caffeine. It's bad for bones. Done!
The less you weigh, the easier on your feet and legs, and possibly you will have less pain. Ah, this one is harder. It's durn near impossible to lose weight when you can't do any activity. The snow is gone and I perhaps could start walking across the road, something I so love to do...but when I do it the first time, I'll find out how that works for me. Just walking through Home Depot makes me pay dearly for days.
Lay down often, rest your head, take the weight of your head off of your spine. I try. Most days, I do this.
Well, I didn't do as badly as I'd thought I'd do. It never hurts to remind ourselves of what must be done to get along as best we can. We all have our challenges.

Sunday, January 11, 2009

Daily Messages

A couple of months ago, I felt inspired to send out daily messages to those online whom I felt would enjoy them and appreciate them. I've been doing it almost every day now since then, and it has become something ritual for me, and a great blessing.

These messages that I type up (not copy-paste or forward) from the little book, Bedside Blessings by pastor-teacher Chuck Swindoll, are emailed each day to about 80 people. Right after I started sending them out, I did write everyone giving them ample invitation to "opt out," and only 3 people out of the 80 or so decided not to receive the messages. That was okay with me, and still is.

But oh what blessings I've had from having this opportunity to "connect" daily with so many people! God must have known what He was doing (of course, He did!) to lead me to this activity. No one can send something meaningful to so many people each day, but through this experience, I have been able to do just that!

The messages are short and sweet, contain commentary by Pastor Swindoll, and then a short Scripture. From these, so many people have written to me to tell me on certain days that a specific message was meant just for him/her! I might be typing up the message from my little book, thinking, "This message is pretty basic. I don't know if it will be that meaningful for anyone," when immediately comes an email back, telling me that the words touched a heart, told the same story they had lived with and struggled with. God just gifts me with these "feedback blessings" almost every day, and I love it.

One lesson went out with a plea to the reader that "you are not accidental! God has a plan for your life!" and I wondered, who might that speak to? Then a woman friend who has great suffering in her life wrote to me that she'd always been demeaned throughout her childhood with just those words!

A crusty, old cowboy-friend writes me almost every week telling me how these messages have touched his heart, telling me in a self-deprecating way that, "I need them more than most." I get to see a part of him that I never expected, that soft and tender, spiritual side. And I am blessed.

Lord, You knew what I did not. Today, I look back and think, "What a silly thing to do?! Why did I have that idea? That nudge?"

And then I reread the precious notes sent back to me that have nothing at all to do with surface observations or facades. They have everything to do with hurt, grief, deep thinking, the basest level of their being where they yearn for God, hunger for what is real. I can look into those hurting hearts, those honest spaces within the readers, when they reflect back to me how a message touched them, for a brief moment, and I relish the true spirit of mankind.

Thank You, Jesus for this immeasurable and unspeakable Gift.

And thank you, Pastor Swindoll.

If anyone reading this doesn't receive these daily messages but would like to, please just give me your email...

Saturday, January 3, 2009

New Appointments

Well, my dear Dr. Fu felt quite badly about my bones being so much worse after 18 months of pamidronate IV treatments.

An online friend who lives on the other side of Portland, OR, told me about her endocrinologist at OHSU, a Dr. Madison. She said that she went to him after she'd undergone 2 years of a treatment and her bones were worse...

Dr. M put her on daily Forteo shots (at home) and in six months, scanned her forearm (bone density scans always scan lumbar region and hip bone), pronounced her fit for the extraction fusion done at TCI, he even conversed with Dr. B on the phone about the case. Dr. B did proceed with her fusion, so her bones must have been acceptable to all sounds like a possibility for me.

I still want the fusion. I'm not afraid of the halo anymore. I'm afraid of NOT getting the surgery, and I know the 4 months of halo are part of that. I'm back on the white horse and joining the cavalry.

My online friend told me it takes months to get in to see the great Dr. M.

I told Dr. Fu about Dr. M, and he said he wanted to get me in to OHSU, and he'd talk to Dr. M.

He must have done so, because the other day, I received a call and I have an appointment in Portland at OHSU with Dr. M for Jan. 15. This should be interesting.

Dr. Fu also wants me to see a local neurosurgeon for a 2nd opinion on my skull/neck. He put in to work comp for authorization and they approved it.

I'm so conflicted now. I don't want to see another surgeon. I like the surgeon I have, except he is 3000 miles away. But, this surgeon is from a spinal cord injury center, and I've never been evaluated by such a specialist (except Dr. B, of course)...maybe this is something good. Maybe it'd be good to have someone local who would be on board to help in the event I needed local help, post a possible surgery in NY. Another surgery in NY.

I guess I will go with the flow. I finally received approval for the Lidoderm patches after over 3 months! So, on Friday, that was our main reason to drive the 35 miles to town, to get the patches.

And deja vu all over again, the gal at the pharmacy drive through window says, "Your Lidoderm patches are permanently denied." I said, "No, I got word they are authorized." Well, in the work comp computer, they are still "permanently denied," and those words humiliate me and make me feel like a criminal. 70 miles round trip and I don't get the patches which do help me so much! I was so mad, really I was. What kind of game is this?

I will call work comp on Monday and they will make the notes in the computer and my husband can make the trip to town to get the patches...sigh...

On the other hand, what fun today watching the birds coming to our little feeder tray on the outside railing: Stellar jays and blue jays and several little birds I don't know the name of. And one big female woodpecker.

A glimpse of normal

So, Friday, we went to our shopping town to do errands. It seems about all I write about here is my little jaunt 35 miles to go shopping, but guess that shows you how big my world is.

I decided to go and have a fine time. The sun was out, and the sky was brilliantly blue. The Columbia Hills, which are treeless and very tall, had snow on the upper reaches and green grass below. It was so enchanting to me, someone who had not been out of the house for awhile.

I did not wear the CTO vest. I decided the vest causes me so much brain-pain and the dark tunnel sleep, that I would try the Aspen collar, cinched up snug, instead.

Once into town, I took off the collar to go into the drug store, and decided NOT to put it back on when I got back into the truck. It also was creating the brain-pain (so different than a headache, it's a swimmy, foggy pain that results into almost passing out), so I left it off and left it to God. Please don't let us get hit by another car, Lord! I prayed.

We next drove to Home Depot and I told my husband jauntily, "I'm going in with you!" Once inside, sans neck brace, I started looking at lighting by myself and this overwhelming sense of euphoria came over me. I felt entirely WELL. I did a mental check of my usual "complaints" and, nope, they were not hurting. It's true. I feel good. Little Richard would be proud.

I felt like skipping through the big store. I didn't....but I felt like it.

The gift of normalcy lasted 30 minutes. Can I emphasize that to those who are reading this and do not suffer 24/7 chronic, central pain? That you get up and go about your business in the morning and throughout the day and of course, you have your problems and your times of suffering, but you still have a pretty normal body that feels pretty normal most of the time.

Just imagine every day, day in, day out, nighttime, every breath, for over four years, no normalcy. Not feeling that "well being" inside your bones and your muscles and your brain? Every second, it hurts deep and profound, and limitations are endless. Then, a window opens and you honestly feel pain...strong...want to skip, of all things! It's a totally different thing than that "find good in every day" and "count your blessings" and that "be happy in spite of your suffering" kind of feeling good.

It's a feeling of GOOD as deep and profound and diffuse as the PAIN you are used to.


I knew it would not last. I have had these glimpses perhaps four times since my injury. I know they do not last. For me, I ate it up. I looked left and right and up and down at store items. I went into four different stores, and also a restaurant. I kept my collar off until we headed onto the highway for home.

'Bout that time, things started to come back. Crushed nerves started to win out over fooled brain cells which had thought for a few minutes that, hey, she's not wearing the collar, she must be healed.!

and I felt healed! I actually had a touch of healing, for a half an hour, I knew what it would feel like to be healed, touched by God, receiver of a miracle! I thought that, even. "I'm healed."

And I also wondered if I were to get the fusion and have the bracing from my mid-Cspine up to the back of my skull, would I have more days like this?

Today, the day after this delightful excursion, I paid dearly. I wanted to die. How could I hurt this deep for the rest of my life? This is so deep...that words fail me so badly. I know people in excrutiating pain...that is not this...I'm not on the floor of a dark closet in a fetal position. But whatever this is, why don't they have a name for it, a word for it?

and why do I keep trying to define share it? I don't know...

Where to start?

I have had a lot of thoughts I've wanted to blog lately.

But I've felt too weak. Too weak to type. And if I have strength to type, there are some other important things I need to type, like support group stuff.

Tonight is no better, but I better give it the ol' college try or another week will pass and I'll have forgotten anything and everything.

My husband has a custom spur-making business (since we are old cowboys). I get to meet the most fascinating people, horse-lovers all, from around the world (I can say truthfully because one pair of our spurs went to France). A particularly nice horsetrainer/clinician called from Oregon a few days ago and we chatted a long time about a variety of ranch-related things.

He wrote to me a couple of days ago with a price question on the spurs he'd like built. We love every order that comes in, and every one is a nice little pick-me-up to the pocketbook. In my mind, I'd replied to his email, a long letter with particulars listed. He called today and asked if I'd gotten his email? I said yes, did he get my reply. No, he had not.

I was quite sure it was HIS computer's fault, not mine, as I looked a tad frantically through my two email programs for his email which would show I had replied. Or my answer to him in my SENT box. Nothing in the Sent box in either program. Ah, there was his email to me and completely unanswered...the little arrow on the envelope to the left of the subject title was missing. I had hallucinated all of that, I guess...glad he called back!

When we first moved here almost two years ago, I was so anxious for one of my dearest friends to come visit me. It was one of the main things that seemed to draw me back to this wonderful state, to be closer to this particular friend. Of course, out West, closer can be factored as five hours apart, which we are.

Finally, she mentioned recently that she and her husband would like to come visit us. I was so thrilled that finally, she'd be seeing my home and I could laugh and visit with her. I told her to come as soon as she'd like, they could stay a night or two, whatever would work for them.

Lately, I have been really bad off. Again, I hate to sound complaining, but like I said in the last post, it is what it is and I can't paint a good face on it right now.

If only there were a way to describe central pain, which emanates from the spinal cord. I thought of a way last night, in the deep throes of this pain. Think of the worst flu you've ever it affects every single fiber or cell of your entire body. Central Pain is like that. It is so diffuse, yet with specific body parts that light up for whatever reasons (crawling scalp; burning arms; itching arms; painful feet and legs, etc) But I can't separate the specific points from the rest of my body because it hurts in every single cell.

Yet, it's not a hurt like I've felt before (except in the last 4.5 years). And I have had some really painful experiences. It's so dang deep, but it's not a "screaming with pain" sort of thing. It's bad pain but the bad part is it's all encompassing, and this wears you out, makes you too weak to think straight.

On New Year's Day, I called my mother and we had a lively visit for 78.5 minutes, my cell phone told me. And I suffered through so much of it with pain in the back of the head, and a very painful throat.

Hanging up the phone, I knew.

I knew I'd have to cancel my friend's longed-for visit. If she lived down the road and could come visit for an hour, great. But all day? Overnight? The next day?

And she really loves to laugh. As do I. As I used to be able to do. But not anymore, or I suffer greatly.

Laughing, talking, singing, it's all connected somehow to the back of the head. And the glossopharyngeal nerve damage I suffered causes the painful throat when talking. Talking and laughing are what this friend and I are ALL about! Asking her not to laugh would be like asking the Israelies not to invade the Gaza Strip right now.

I wrote and told her we must postpone the visit and she was very saddened. As was I. is what it is.

I joined for a brief period a brain-injury support group, though I quit after a week. It was too confusing for me. But one woman said that in order to organize her life, she had to realise what was too much for her, make it smaller or get rid of it. I think she called it "define, diminish and delete."

I had to delete the visit.