Thursday, April 30, 2009

A Good Change of Reason

We have reasons for everything we do, don't you think?

All the time, we are making choices. And, even in the little things, as we prepare to do something, we have a reason why we want to do it in the backs of our minds.

I have kept symptom lists for five years, ever since my injury. (Note: I rarely call the event when I broke my neck an "accident." I "choose" to call it an injury and not an accident, since I don't believe in circumstance or coincidence).

With what I have going on, it is manifested in many ways. And a symptom list is usually at least two pages long, single-spaced.

With every new doctor visit, I've given them a list of my present symptoms. I suggest every patient with a complex case do the same. Handing these sheets to disinterested doctors year after year didn't seem to make a lot of sense to me, but I felt strongly driven to do it. My thinking at the time was always: "At least, Mr. Doctor, you have this in your file. You can never say that I didn't tell you what I was experiencing. You may never read this, but at least it's 'on the record.' "

And after five years, I was blessed to see at least one reward for my efforts.

I've written here about being evaluated by 3 "Agreed Medical Examiners"-- three specialists (an orthopedist, a neurologist and a neuropsychologist) who occasionally see me and keep track of my situation and give their reports to Workers Comp. This allows for consistency and unbiased management of my care. Both sides, the patient and the insurance company, have agreed to accept the word and opinion of each of these specialists.

After seeing these AMEs last September, I requested copies of their lengthy reports (patients, remember you have the right to have copies of ALL reports, test results, and even notes that pass between doctors concerning you, a right given to you by the Freedom of Information Act).

The last one to come in was from the orthopedic surgeon. And he mentioned the symptoms lists. That I have been consistent in stating my symptoms over all this time. And the fact that I was turning in lists made it clear to the educated examiner that, all this time, I've been searching for an answer to the question of why I keep deteriorating in spite of doctors telling me it was all "emotional" or that I am a "perfectionist who can't accept less than 100% of recovery from my injury."

He stated that it was not until I was seen by The Chiari Institute that I finally received the obvious answers.

So...I know the answer now. Why do I prepare a symptom list to take with me and give to the nurse practitioner in NY before my fusion surgery in June? She will be asking me for all of my symptoms, so having a list with me will ensure that I do not forget.

But, I just thought of a new reason for keeping this list-document open on my computer, ready to accept additions of the big and small pains and physical events that I experience each day.

A new reason.

After my fusion, I'll be able to go back, look at this list, and realise just how bad I used to be. I'll be able to say, "This is gone...check! This is gone...check!" It's all too easy to forget how bad things used to be when we are out of that situation. Just watch an abused wife whose husband dies and notice how she forgets the bad and remembers only the good about the man who gave her so much misery for so long.

I remember another quote: if we could remember pain as it really is, there would be no more second children in a family.

It's a good, positive reason-change. I feel good about it.

Wednesday, April 29, 2009

It must be mating season

...for across the road this morning, we watched five or six wild tom turkeys, puffed up and fanned out, strutting back and forth in competition for the hens' attention. What a treasure to watch such wildlife activity right through the front window!

I have been incredibly sick the last two days. All kinds of brainstem stuff. Lots of pain in my legs and occipitally. Very weak, and I'm back to feeling too weak to step outside, even though my lovely tulips and daffodils are beckoning loudly for me to come view their beauty.

I figure it is because on Friday, Saturday and Sunday I felt well enough to go out in the yard for an hour to an hour and a half and do some light gardening stuff. Setting sprinklers on some plants...sprinkling some mulch on a front bed...spraying Miracle Gro on the irises.

As ever, whenever I feel halfway good and do things, it takes a couple of days for the inevitable flare up to manifest itself. I have felt like my head can't stay on top of my spine...I've spent most of my time in bed reading or napping.

Too weak to talk even. I hardly say a word to my husband throughout the day.

As I've written before, it all confirms that I need to get this surgery done on June 4th. No doubts, no fear.

I really don't have much to write about since I haven't been doing anything, and also because sitting here at the computer wears me out. My arms and hands are weak and they ache. So, I'll close. Wish I had better news...but I gotta write it like it is!

Wednesday, April 22, 2009

Monday morning, 8:20 am

April 20, six days before leaving for New York, the phone rang.

I was still asleep and the phone woke me up, as well as my husband telling me to take the call.

"Who is it?" I asked. I didn't want to talk to anybody! Not before my first cup of coffee!

"A woman's voice, a nurse or something."

It was the surgical coordinator at TCI. My surgery for April 28 was off. Due to "unforeseen circumstances."

Shocked....I stumbled through the decision of when to have the surgery rescheduled, and we decided on June 4.

Since then, I learned that it's a family emergency for Dr. B that caused the cancellation of all surgeries at TCI that involved him and Dr. M.

I cried so hard. I don't know why I couldn't just accept what had happened. I have faith things will work out for the best. I've lived that way for a long, long time. I think it's the brain injury...the need for things to be routine and the "known."

I felt like I was just getting most of what I needed to get done...well, done! And now I'd have to backtrack, cancel flights and hotel reservations and also talk to my caregivers and see how this affected them...AND THEN go back and choreograph the whole thing again! It seemed insurmountable.

Took me a whole day to get through the depression that resulted from that tender "button" that had been pushed by the news of cancelled surgery. Seems silly to me now.

I've talked about this before because I've been in this situation before, though not to the point of having a scheduled surgery cancelled. But I've been where Dr. B told me to wait 18 months for fusion and dealing with that let-down....I went through that 18 months of bone-enhancing drug therapy and then had the infamous bone scan (the one that told me in error that my bones were significantly worse) and that dismay that I'd probably never have the fusion ever.

Then, on Monday, it felt like deja vu all over again. Would I ever get this fusion? Will I?

So, I've written before how I have to build myself up and tell myself over and over how much better my life will be after this fusion....why I need to have it much less pain I'll little carrots thrown out in front of me on the trail, keeping me putting one foot in front of the other toward the goal of this surgery....a tough, "not for the faint of heart" operation.

So, after having those inner cheerleaders rah-rah'ing their routines day in and day out, the sound of a secretary 3000 miles away telling you, "Uh, not next week!" just opened the gate and seated me on that roller coaster again, the one that rides up and down and swerves from side to side, climbs and struggles along the cogs as it inches up a hill, then scarily drops the bottom out from under you as you swing your arms in the air and scream!

Today, I'm all better. The weather has been great, the daffodils are blooming, the tulips also.
Golden forsythia at the end of the house blazes in glory; leaves are sprouting forth on the berry vines...and there's a lot I can do in the yard, puttering around, and now, I have 45 more days to get it all done and ready for the time I can't do much.

Others had it tougher. I know of at least two people who were actually there in NY, had had their pre surgical testing done and then got the call the night before, that their surgeries were also cancelled. I had it much easier.

Hang in there with me, folks, I might just get this surgery done yet!

Sunday, April 19, 2009

more Sunday PM thoughts

Just for the record... case you've never thought of it, taking a shower takes a lot of strength and energy!

I find it so hard most of the time to take a shower. It all just seems like too huge a job, along with brushing my teeth. I just feel that weakness in my arms and neck and legs, when I think about taking a shower.

Now, I assure you, I do force myself to keep up with some semblance of dental hygiene, and I also am thankful for the invention of baby wipes!

Throughout my life, going back to when I was a kid and we had no running water, when I took baths in a "#2 tub" on the kitchen floor while my Dad heated up the same water to take his bath later on...on up to many years later and in many places in the west, living in cow camps and mountain cabins without water, I know full-well how to take an effective "spit bath."

Which is also a good thing because with the halo on for 3 to 4 months, no showers! Can't get the pin sites wet!

I'm really liking my shaggy-boy hair cut I gave myself last week. A lot. Probably because I'll be losing that this coming week when Pete gets out the dog clippers and I sit in the kitchen under the light with a towel around my shoulders.

I've a permanent notice on this site about Healing Friends ( ) , a faith-based message board I created over a year ago for those who suffer with neurological conditions. The woman who first had this idea for a support group and then mentioned it to me, Gale from North Carolina, will be in NY at TCI while I am there! Thus, I will be getting to meet Gale and our other HF friend, Karen, who will be the one who is helping me in the hospital and also flying home with me to help me with that. I believe God knew in March, 2008 when he inspired Gale about a Christian message board, that I would be blessed by their help now in April and May of 2009.

Like I so often say, my Dad knew I would need my sister Susan when he urged us to meet back in 1992. God knew I'd need a friend like that, too. Susan is my half-sister and we'd never really met until we both were in our 40's. Dear readers, love and hug your family and friends. I don't know if you've had times when you were in dire need, and someone stepped up to fill in the gap and take a stand and BE there for you. If not, then you don't know YET what it's going to mean to you when it does happen.

When you are lonely and desperate, when you are out of options, when you hurt and you are helpless, then God works through certain people in ways you wouldn't believe. It makes me question whether I've ever really obeyed the Lord and filled the gap and sacrificed for others the way these people have and will do. They are obeying God and I pray their rewards will be great.

Not one of us likes being helpless. We have survived this tough world because we feel strong in ourselves. We walk out in big, confident strides and never think we'll ever be struck down, we'll be the needy ones. And we can't imagine what being like that would feel like. I know because I never thought about it.

I look at notes I wrote a year and a half ago on my journey back to NY for the tethered cord surgery. I mentioned how I hated being pushed around the airport in a wheelchair, people looking at me.

Now, those feelings are gone. I've grown accustomed to appearing the weak one.

Here at home, I take off the CTO sometimes before I go into a store, giving myself a break from it. And when I come back out to the car and am going to put it back on, I must stand outside of the car to do it. I can't get it on from a sitting position.

So, I stand in the parking lot at the grocery store and the post office and the burger joint, and I have grown used to just not looking at people at all. I stare ahead through unseeing eyes and do my thing. If I look at people, then I have to use my energy, mentally, emotionally and physically, to smile at them and make them feel better by letting them know I'm fine, don't pity me!

So, I don't look at them...and I get my brace on and I get into the car, buckle up and away we go, my husband my driver...

Just thank God as you read this for your family, for your friends, for your e-friends, because when you need them, the true ones really be there for you. And you will learn a lot about need, and feeling useless and helpless, and about graciously receiving. And you will be a better person for it all.

A week from tonight

...I'll be in New York. It'll be another Sunday night and I'll be expectedly exhausted from my trip.

What a long trip it is to get to my neurosurgeon. I leave my house at 3 am to get to the Regional Airport and then fly a commuter flight to Seattle...then get onto a plane that will stop in Minneapolis and then fly into LaGuardia at 7 pm eastern. My dear sister will be waiting for me (again) when I arrive.

I haven't posted in the last week because I just don't feel well at the computer. Tonight, I sat down and within ten minutes, I felt the familiar flush feeling over my scalp and neck, sweaty and weak and brain is scattered and fingers typing seems like it takes more effort than I have.

So, this is short. I've been getting things organized for the trip, typing up phone numbers and lists and schedules...I still have to type up my questions for Dr. B when I see him Monday night (27th)...I have to round up some photos that I want to take with me so I can "see" my beloveds: my husband and our son.

Forms arrived in the mail on Friday for me to sign and fill out. This is for the nerve monitoring done during surgery so that they know if they are touching a nerve that could cause damage and paralysis. I've seen it done on Discovery Health and it's a wonderful thing.

I've been trying to do a few small things, like putting Miracle Grow on plants, bushes and flowers in my garden, because I know I will be done with these things for this summer by the time I come home. And still trying to finish the simple drip line I've started...I put in 9 emitters (drippers) last night and it caused me so much pain, all over flushing, but I figure I'll get over that, and if I get this done, it will help me to keep some plants going during the upcoming hot summer.

I want to thank the group of people who sent me a love offering last week! I was so surprised and so blessed. It turns out God showed me right where that money was supposed to be used: work comp will not pay the entire hotel bill, I've learned. Not for the hotel I want that is near the hospital. So, this helps me so much and I thank you all for your generosity your displayed through your love of our Lord and Savior.

I'm feeling really good about things, but also have this strong emotion in the background that something HUGE is looming. Looming is the perfect word. It's like I have this big river to swim across, I know it's out there and I know I have to do it and I don't know what will happen while I'm trying...but I KNOW that it's coming.

Other than this, I feel positive. And full of faith.

Thanks to you all for your prayers and support. I'll try to be better about blogging once I get back, I hope I'll have lots of wacky halo stories!

Sunday, April 12, 2009

Two weeks, countdown begins

I seem to be doing so badly lately. My life is so simple, so slow, and yet, I can't keep up with it. I have emails piled up to be answered, I have tasks to be done, and I just can't complete it all. But I know what needs to be done WILL get done, or it wasn't important to begin with.

But this is the thing...

Have you ever carried something really heavy for a long distance? Perhaps it was a bucket of water out to the horses, or a bale of hay, or whatever it might be, I wonder if you've had that challenging experience and, when you get close to the finish line, to the spot where you can stop and rest, or you will finally reach your goal, the last few feet are the worst part of the whole journey?

You might see the Ironmen on TV, they are carrying big boulders to a finish line, and as they approach the line, they are shaking, losing their grip, faces are red with exertion, and sometimes, they even drop the boulder right before they make it across.

It seems like those last few feet, when you have your goal in sight, are the hardest to hang on.

That is how I feel lately. My skull seems so loosely attached to my spine. It seems new symptoms keep popping up. I have a hard time swallowing, food gets lodged in the top of my esophagus yet my gag reflex is not triggered at all...I feel much weaker....ANY talking seems to cause such pain at the back of my head. (I am very quiet these days even around home)

I can't imagine feeling this way and NOT having the hope of the surgery coming up.

On the other hand, I am anxious, to some extent, about it all. I know I will do it, and I will take one step at a time and I will do it, I will get it done and I will return home. I will keep taking that next step.

But...there are still some little, niggling concerns that arise much of the time. I am sure this is natural and to be expected. I must have felt this way before my last surgery. I also feel better than last time because this time, when they push my bed down a hall, or push me around in a wheelchair, I will have a much better idea of what is going on.

So, these are just my thoughts leading up to D-Day....

Eggs...and signs of hope

Here it is, Easter night.

I am two weeks out from leaving for NY for this big surgery.

I boiled some eggs today, no, not for hiding in bushes for kids and egg hunts, but for egg salad sandwiches for lunch.

The egg carton, holding 18 eggs originally, became empty, so I put it on a pantry shelf with a couple of others I've saved.

The cartons represent hope for me.

Because I have hopes that I will be able to have a small barn on the hill someday, which would house a couple of rabbits, a goat or two, and most of all, Rhode Island Red hens. Just about six of them should be enough.

We've usually had chickens throughout our lives and I've loved caring for them. The last time we had them, I painted a sign that read "Egg Plant" and tacked it on the side of the chicken house.

I swoon with the sounds of cooing hens, their little private songs of happiness are treasures to me. I enjoy caring for them, and looking for eggs every day, after hearing the proud cackles of hens who've just laid a few of their gifts in golden nests of straw.

So, I save the cartons for when my future hens will be producing eggs enough for us and our neighbors. I might sell cartons of fresh eggs down on the Main Street of our little town on Saturdays in the summer, next to baggies filled with homemade cookies and maybe a pair of spurs.

My little barn will smell of leafy green hay, the only type goats will eat. Grain will be stored safe from mice in cans with sturdy lids. I'll run water to it, too, to keep the rabbits' water dishes full and the goats' buckets. And I'll be reminded of my lifetime of living with livestock. I'll coo to my hens, sing to my bunnies, lead my little goats out to stands of luscious summer grasses on the hill, teach my dogs to respect my small group of animals.

Things to look forward to and to plan for. God willing.

Thursday, April 9, 2009

Happy Anniversary!

5 years ago today, at about 10 in the morning, I fell from a horse that stopped in front of a jump and started this journey.

I had no idea I would be at this point five years later!

But, I am happy because I survived. Because I am still surviving and fighting the good fight. Because I have been drawn much closer to my Lord. Because I have met such wonderful people through all of this. Because God has been able to use me in ways I'd have never imagined.

I have not posted in over a week. Week. Weak is what I've been. Too weak to write. I do get some good half-days sometimes, but when those moments hit, I'm trying to do things that need done around the house or even the yard.

After I do those things (for example, an hour of very light, slow yard stuff - maybe pruning a rose bush), I am wiped out physically and mentally and I fall into bed and sleep for an hour or so.

And, most importantly has been getting the testing and paperwork ready for the surgery. It not that much to do, but it has taken me a week just trying to get 3 documents ready to fax to TCI, and be ready to pack and take with me to pre-op testing before the surgery.

And there is no obstacle to getting this docs except my own brain and stamina. One was in my own I had to go to the hospital a mile away to pick up...and now I'm just waiting on the letter written by my PCP. All of the pre-op testing I needed here locally is done.

Since I wrote, I got a "wild hair" one night and cut my hair down to one inch or less all over my head...a real "boy" cut. I figured this would familiarize me with the lovely shape of my head and having my hair shaved before I leave for NY won't be that much of a shock. I actually like this really short hair!

I bought a few hats to wear on the way to NY, and a cute ballcap to wear now when I want to.

I've had several episodes of what I believe is Autonomic Dysreflexia. They especially come when I set my mind to do something that has multiple steps, for some reason. My scalp prickles from the back of the neck and up all over my scalp...I get very hot and sweaty in my scalp....I get weak and flushed. My arms get tingly and my palms too.

I've stopped checking my blood pressure at these times, I know already the signs that it is spiking. And with AD, the contacts between the heart and the brainstem is disrupted, so the BP spikes and stays there, unless I stop the activity. Get a fan going on my face. I get these even just writing about it. It's part of the sympathetic nerve system.

Dr. B said I can get this confirmed when I see the neurologist and him the day before surgery.

One thing I've learned is that the Invasive Cervical Traction (ICT) will be done right before surgery. I had it done the night before when I had the TC surgery. But that was because that time, it was a separate test being done to see if I needed the fusion.

This time, it is a part of the fusion process.

Wednesday, April 1, 2009

Preparations and stories

First of all, a comment was left a few posts ago by "Janice." Janice, if you are reading this, I left you a message under your comment. I'd love to get in touch with you!

Today, it is snowing, sometimes heavily and sometimes lightening up. But it is not sticking. I woke up to my husband calling me to look at the wild turkeys in our back yard. About ten of them were looking for acorns left behind by the deer this winter. I hated to do it, but Mickey and Quincy needed to go do their morning ablutions, so when I opened the door, the exurberant black doxie took off to rid the "ranchito" of the menacing birds.

Turkeys fly very well, so they were in no danger. Mickey spent about an hour sniffing out the trails and tracks of the wild birds, using his natural-born instincts. He's a hound-dog!

I've been whittling on all that needs done before my departure on April 26. I still need to reserve our hotel rooms and buy my flight tickets. I don't know why this seems hard for me to do, but I'll get there. Perhaps today, I will get one of those things done.

Monday, I did the 24-hour urine collection thing, for the 4th time since late February. And when I took that into the hospital yesterday, they also drew blood for more tests and asked for another cuppa. Interesting.

I don't need another echocardiogram! My local doctor felt it was not necessary since I'd had one in Nov. of 2007. I asked TCI and they said if I have had one within 18 months, I do not need another one. I'm glad! I'll been overdosed from doctors by this time next month. One less, I'm glad to cull that one out!

While in town yesterday, I bought a light, white robe for the hospital and in the hotel room after. I also bought two hats to wear TO New York with my shaved head. One is a soft knit, blue, very simple one, called a "Soother." That name works for me! The other was a floppy black one that looks like a fishing hat. I look forward to wearing that someday while I'm actually fishing!

Coming home from NY, if I have a halo, the hats won't work. But going to....I'd like to keep my head warm.

I also bought a disposable camera. I took one last time, it was great for photos of me during the traction.

Good news, I have a traveling partner! My friend from Seattle, who came and rescued me last time, flying unexpectedly to NY to help me get home, is able to fly there and be with me the last 6 days and then fly home with me. Phew!! What a load off my mind this is!

Kathy and I get along great and she is a patient at TCI as well, so she knows the ropes, has had this same surgery herself. In fact, she is my inspiration. It's taken her quite a long time to really feel good post-fusion, but she says now, she is feeling really good. And she's been pretty active and busy during this time, too.

I think I'll take some of my husband's Hawaiian shirts for the loose-fitting, button in the front shirts I need to go over the halo vest.

Want to know how sweet this guy is? This morning, he told me that the other day, he found a big, long earthworm in the middle of the driveway. He said he scooped it up and then laid it gently into my flower bed.

He watched it awhile and it wasn't doing much, so he poked a hole into the dirt with his finger in front of the worm (how did he know which end was the front?). The worm didn't crawl into the hole, so Pete then covered the worm with earth and watched the dirt move with the worm underneath it.

What a guy! I'm sure he was thinking of it because yesterday, there were about 20 robins on our front lawn.

So, the clock ticks down, it is April 1 and in 27 days, I'll be 3000 miles east and going through some major stuff. I feel so confident, so peaceful about it.

In fact, I feel peaceful about everything right now. The situation with the economy and the government....the future....even if I were to die during the surgery, I feel very at peace about it all. It's a wonderful place to be, in the palms of God, safe and protected.

People say to me, "You're NOT going to die during this!" and I agree, I probably am not. I don't have a sense that I will not survive it. I feel very confident that I will come home...and eventually, I will be a lot better.

BUT, no one really knows, now, do they? And I feel very peaceful about however it all goes.
For to me, "to live is Christ and to die is gain." I have said, for five years, "God has a plan." And that mantra has obviously settled into my psyche after saying it for so long.