Saturday, May 31, 2008

Revelation Morning

This morning, I drove into town with my new Johnson CTO. It is incredible in the extra stability it gives me, and as I think I've written before, when something gives me better stability, my mind thinks: wow, the fusion surgery perhaps could do this for me 24/7!

I shouldn't be driving, I know, but my husband's foot is still to where he can't drive using a clutch. And as I've said, it's only a mile into town. This doesn't work too badly though because he looks both ways for me and watches backing up etc, and does all the looking off to the sides that I can't do. We went to the gas station and filled up a can, $4.09 is our price now. We went to the grocery store for a rawhide chew for Mickey (more on him, soon). We went to the old General store and I bought some used steak knives from a yard saler out front. And then we went to the post office.

Everywhere I go, I know that people are looking at me because of the "in your face" CTO jacket. The Johnson is probably even more in your face, the back of it, the part I love, is a big bowl-looking piece of plastic that cups the back of the head and that comes up high enough that a velcro strap comes across the forehead and back to the other side and this part I absolutely LOVE! I think these two features, the ones that make me look like a Storm Trooper, are exactly the ones that make me feel much better and safer. I know people look at me. I still am not totally used to it.

But I had a revelation that meant a lot to me today.

"I am who I always hoped I would be."

And I'd never have known it if I were not in the position I'm in now.

When I was strong and healthy, or even when I wasn't but wasn't going about in such large braces, I would see others in wheelchairs or in other debilitating conditions, and they would smile, they'd strive to do something, to find good in a day, to make me feel better about myself. And I always hoped that if I were ever in their position, I would be as graceful and strong as they are. But I wasn't sure I would be.

But I am that person. I do every bit of whatever I am able to do given the shape I'm in. And I do it with a smile for my fellow man so that they won't feel badly about things by seeing me. It's all glory to God.

And I like knowing that about myself. That was a gift today.

Friday, May 30, 2008

for next Monday...

I am going to ask my PCP at my appt next Monday if he thinks I should see a speech pathologist (again). I am becoming aware that without the gag reflex I could aspirate something and perhaps a speech therapist could help me learn how to get the food to the entrance to pharynx and avoid the windpipe. It's worth a shot. So far, I've been blessed that that hasn't happened.

Moving food in the mouth and chewing are controlled by the Trigeminal Nerve.
The swallowing process is controlled by the glossopharyngeal nerve, one of the cranial nerves.

Now you know the REST of the story! ;-)

Thursday, May 29, 2008

Mickey is waiting...

just got an email from the foster home that Mickey is waiting for us.

Tomorrow is the day! Here's the photo from his webpage!

He is 1.5 years old, a Dachshund mix. We think he and Quincy will make quite a pair!

PT, new hound dog, senior store

Today, I drove myself in to PT because my husband went in the senior van to Portland for the follow-up on his foot that was operated on May 16.
It's just a mile into town. What a nice day and I felt kinda good, you know? Like someone kind of free and able to go where I wanted to go.

Well, I didn't WANT to go to Physical Therapy, but I did. My history with PT has been such to create an avoidance within me to this sort of thing. But Dr. B in NY wanted me to have this, so I'm doing it. Or trying it.

We live in a small town. I just picked up our new phone book, all 12 pages of it, plus 16 pgs of yellow pages/businesses. It's nice to be just a mile from nice medical types in our little hospital, everything very low key. The PT place is a room inside the hospital and crowded into it are three curtained-off rooms for private consultations, I guess. A few stainless steel vats and tubs for icing, warm water, whirlpool, I don't know? One large, flat table/bed thing...a couple of large rubber balls, and one exercycle. All very high tech.

Rich, the therapist, is as nice as can be. Gentle and a great listener. I explained all of my weird stuff and he genuinely showed interest. Then, he began by giving me a few things to do, SO minor and low key, you would not think they could do any good whatsoever. Or any harm.

He worked a bit on my posture, and then asked me to do some rotating of my shoulders. OH, dear, that caused stabs of pain at about the C4 or 5 level. So Rich said, forget that, just lift your shoulders a few times.

Adjusting everything he suggested downward to my level, he told me to hold my chin level and then sort of glide my head forward, keeping my neck still. And back. Cue the music "Walk Like an Egyptian" here.

I did that twice.

Remember that. I did that little 1 inch manuever twice.

I liked Rich a lot, he really had some good points. I told him that I notice when I stand, that my hips sort of rotate forward and my belly sticks out. Then, standing with my brace on, my posture is very good. He said that is because without the collar, my body is trying to find the position that will balance and hold up my head, since I have no use in my ligaments. I thought this made a lot of sense.

Very honoring, gentle man.

Next, I drove to the post office, where I parked in the handicapped spot and checked the mail. Only got the electric bill.

Well, there I was in our big, exciting town alone in the truck, the world was my oyster! What to do? I drove a couple of blocks over the Senior Citizen's Center.

Wow, everything was 50% off! I got two shirts for summer, 4 glasses that will be so perfect to make lattes at home with; 2 glasses with wild birds etched into them with silver rims that I intend to frosty-up in the freezer and pour half an O'Doul's into sometime. A great find were two matching light fixtures, hanging type, leaded glass, older and very Craftsman style, both for only $2.50! A little dark green bud vase. Life was good!

But I was pooped from my big excursion, so I drove the one mile home, cinched up tight in my Vista brace. Passing the little trail along the river that I keep wanting to go for a walk down, but never have the oomph to do it. Didn't have it today, either.

At home, the phone rang from the dog rescue folks up north in the city where I'll be going tomorrow for my new Johnson CTO. We are going to adopt Mickey, a Dachshund mix, sweet little guy who had belonged to some fruit pickers but when they moved to another orchard, they left Mickey. The foster mom told me Mickey is bi-lingual. Hola, Mickey!

[Note, to those who follow this blog, we never did get a look at Speckles. He is still at the rescue, but we can't drive down there, and they would not lower the adoption fee anyway. At $150, it was too steep for retired, disabled folks. I think it was meant to be, Mickey is more the breed of Quincy. And Quincy really, really needs a buddy to play with!]

This evening, I started up with some yucky symptoms. My skull base hurts badly. It's not muscular, it's from whatever is misaligned and rubbing up against whatever it's not supposed to! And it hurts and is scary. I took a Percocet and am icing it.

But worse, the swallowing issue is very bad! This is, as you readers have heard me say before, brainstem compression stuff. And all because I did 2 little one-inch manuevers, which, by the way, I'm never going to do again.

Eating soft food for supper, the food sits at the back of my throat and isn't gagging me at all. What makes it down into the pharynx is moving very slowly, painfully slow. While at the same time there is that lump going microscopically slow, there is the sensation of the food up at the top of the entrance to the pharynx. I know what I have to do and just wait for things to move down to where they are supposed to. This has nothing to do with not chewing enough, nor with the consistency of the food.

My throat is sore like I have the flu. And jagged, lancinating pains light up here and there, like in a hand, or a foot, or my side. Compressed, angry nerves that are asking me, "What were you thinking?"

Also, the secretary from the PT office called me to say that work comp authorized me for ONE visit to the physical therapist. One visit. Well, maybe that's good of them to be so generous, it's already killing me anyway.

Tomorrow, or soon, I'll post some "Meet Mickey" photos.

And life goes on.

Tuesday, May 27, 2008

Chimes of Spring

Nothing really to write about, so thought I'd slip in another Springtime photo of my windchime

with roses not yet blooming...

No pamidronate treatment tomorrow. The cancer center called and said they had two gravely ill people who needed to come in and would need my "chair." Of course, I was glad to be able to reschedule for next week.

Friday, May 23, 2008

Johnson CTO

I have my appt to go pickup my new CTO vest next Friday. This is a photo of what it should look like. I don't like it already, but then, I'm feeling grumpy tonight! ;-)

Sad Visitation

Happily I sat today at my computer, absorbed in some advocacy for Chiari patients, when I heard my husband call out, "Mom! Look out the window!"

Swivelling the office chair to the east, a vision appeared on the other side of our chainlink fence, between it and the road. The most beautiful grey-white horse! He was loose and just grazing along.

It's been well over a year since I've been near a horse. This sight was like a magnet pulling me up out of my chair and out the door. My husband queried, "What are you doing?" and I said, "I'm going to open our gate to let him in so he won't get hit on the road!"

My concerned spouse said, "Don't do that! We don't want him in here and you will get hurt."

So I stood on the deck and gazed at him, noticing he was a gelding. I whistled to him and he looked at me between rambling bites of green grass. I wanted so badly to scratch above his eyes, to talk to him. But I'd just been scolded like a child and told I'd get hurt. By something I worked with for 40 years.

I came back in the house and he walked back north. I called the police dept. to report him on the road, they told me to call the Sheriff's office, and suddenly, it was too much and it hurt way too much. I hung up the phone, told my husband that the horse was gone from my sight and not my problem now. And I didn't look back out the window.

But ever since, stings of sadness brim my eyes with tears when I think of him. That was the closest I'd been to a horse in so long, even though it 100 feet away. Now I know why I avoid them. I miss them beyond words and the crying hurts so badly at the back of my head.

He was so incredibly beautiful.
He was, simply put, a vision.
A lost connection.
A glimpse into something I'll never have again.
Something I dare not think about.

Deer in the Window yesterday morning

After the Rain

It's a full time job being sick...

Today I:

1)set up an appointment with the orthotics place to pick up my Johnson CTO (72 miles away)
2) Called the local senior transportation place to arrange travel to Orthotic appt on next Friday, plus the cancer center in different direction next Wed, plus for my husband's surgeon appt in Portland for next Thursday.
3) Called the local PT people to schedule appt for next Thursday while my dh is in Portland
4) wrote these all down on the 2 calendars we use at home, plus wrote them down in list form (easier for me to use for some reason)
5) Call the cancer ctr to get instructions again on the procedure for the 24 hour urine collection I will have to do next Tuesday before I go in next Wed for the 3 hour IV drip
6) Got together the scripts written by tCi for the PT and still need to find the authorization for it all, in preparation for next Thursday's PT appt.
7) called my PCP to get an appt for June to discuss all of this, plus he needs to see me again before he will fill more pain meds.
8) Located the bag with the stuff needed for the 24 hour urine collection so that is ready
9) called cancer ctr to see if they got work comp authorization for the pamidronate trx on the 28th.

All of this requires PHONE (blech), turning back and forth on my desk which makes me very dizzy and confused. Each one also takes multiple steps. I learned this from my wonderful speech therapist 4 years ago. You might say, I only had to set up an appt! And it really wreaked havoc with me!

And she would point out, "well, what steps did you have to take?
1)find the doc's number
2) close office door to keep noise out while calling
3) dial phone and listen to messages and then talk with receptionist.
4) look at and consider calendar for appt date
5) firm up appt
6) enter onto calendar

I had to use abstract thinking and reasoning, too, not my strong suit since my TBI.

So...keeping track of this stuff is alot of work!! pant, pant.... Those of you with these conditions PLUS you have children with this stuff, too? NO wonder you are stressed! God bless you!

Sunday, May 18, 2008

Mt. St. Helens Day

Today was the day, 28 years ago, that Mt. St. Helens erupted. 57 people lost their lives.

Everyone in the Pacific Northwest remembers this day. It's like asking, "Where were you when you heard Kennedy was shot?"

Last week when I drove 70 miles north to the orthotist's to get my new brace, Mt. St. Helen's dominated the skyline, easily recognizable with her upper "quarter" missing. She is heavily covered with snow right now after quite a winter.

Above are some photos of her before the eruption and after.

I mark May 18 every single year, I always remember that date.

Vista Brace

I wanted to share a picture from the internet of the new Vista brace I have now. It helps SO much. Mine is adjusted differently than this one you see. This woman has a nice long neck, mine is like a turtle's head coming out of its shell, so the brace is adjusted on the absolutely shortest setting possible, and then the yellow button in the front is turned somehow which locks it into place so that only the orthotist can change the adjustment. That was the first time I'd seen something like that, like we don't have the right to change something on our own bodies! But I know better than to make adjustment anyway. I've tried and they never improve things or make the dang braces any more comfortable or fashionable!

And now to the weather...

What's it been like where you are?

Saturday, it was 100 degrees here in paradise. Today, it was 95. We have Air Conditioning and it was conditioning a lot of our air the last two days!

Friday morning when we left for the hospital/surgery, all of our oak forest was still pretty "see-through." The new leaves were still curled-up balls.

When we came home, the heat of the day had brought the leaves to fullness and the trees were back to being leafy and bedecked in green.

Incredible what a difference a few hours of high temps can make.

Weather is supposed to start cooling back down and becoming more seasonable now.

So, now back to the news desk!

Thinking of expanding the family

Lately, we have been considering getting another dog. No, not to replace the one we have (Quincy) but to give him a companion. Quincy is getting fat since I'm unable to walk him across the road anymore. And life seems to short for him to be sleeping on the guest bed for the most part of each day.

I looked up on the internet at our local rescue place (30 miles away) and found "Speckles." My California friends will appreciate that I keep referring to this dog as "Spreckles!" Here he is above.
He's two years old and they say he is small and think he is a Cocker Spaniel/Terrier mix. Now, isn't he a cutie? I think he'd make such a nice fellow for Quincy to play with. We have such a neat place for two little dogs, with our 3 acres all fenced with chainlink.

I wrote to the rescue because the adoption fee is $150. We can't spend that on a dog. So, I told the man our story and wondered if there is any way they could reduce the price to someone disabled? The answer was, "usually, no, but I will ask my boss on Tuesday."

I'm giving it to the Lord, if Speckles is supposed to come join us here then He will make it happen. If not, then it's not the right time or the right dog.

I'll keep you posted! can do!

In my mind, it had been so long since I'd posted here. I felt so remiss about not being better at updates. But as I came here to post, I see the last date I wrote was just last Thursday. Not that long ago. I guess it feels like a lot has gone on.

My husband had his foot surgery on Friday. The hospital is 2.5 hours of mostly freeway from where we live, and both of our vehicles are standard shift. Husband's surgeon said no driving a stickshift for four weeks.

How to get him home? I simply don't drive anymore. I did drive into town a couple of months ago (town is one mile away and a very, very small town!). As I considered how to get my husband home from surgery, I figured I could drive if I had to. I could cowboy up and get 'r done.

And part of me wondered if I'd maybe gotten lazy or more dependent on him driving me around than was necessary. I figured I'd learn something if I went ahead and drove.

Firstly, it hurts like hell to turn my head to look up streets for oncoming traffic. And not only does it hurt, but there is the sensation that things deep are being compressed and making me nauseous and dizzy.

Outfitted in my neck brace, I can't turn and look at my blind spot anymore. So, as we drove east on the freeway in the midst of a whole herd of big rigs, I depended upon my mirrors to make decisions on whether to change lanes or not. This is very hard for me to do, I realise now. In order to make that judgment, I look in the rearview, then I look in the panoramic rearview above it because that WILL show any cars in my blind spot...then I look back in the regular rearview...then I look in the outside mirror and then one last check of the rearview, and all the time, processing, I missing anything? Is it clear?

I can honestly say that not once did Dr. B's words ring in my memory: "Avoid a motor vehicle accident at all costs. Your C1 could slice through your spinal cord." I was too occupied with other things.

My arms felt "neuro" and achy and were weak on the steering wheel. I could tell that pushing the clutch and brake and accelerator were firing up every nerve in my Tethered Cord surgical area. Nothing about this felt right at all.

But , hey, all of my life, I knew how to push past pain and fear and weakness and fatigue. This was nothing new...and this was something I HAD to do. But about ten miles away from home, I heard my husband yell and felt his hand on the steering wheel. "Wake Up!"

My eyes flew open to see us heading for the guard rail where on the other side was a steep downslope into a canyon. It seemed to come out of nowhere, like a "black out." My hands were firmly grasping the steering wheel, my head wasn't nodding, but I was out for a nano-second.

Thankfully, my husband had been awake even though he'd been under general anesthesia just earlier that day! Thank You, Jesus!

We made it home and I vowed never to drive any distance again. Unless things change for me after the fusion I hope to someday have.

Now, we are home, but still, I need to drive into town to get groceries and such. I went on Saturday and have been suffering so much. Turning the head even though I park in places that allow me not to need to look over my shoulder (an impossibility) to back out is something that throws my whole system out of whack. Pushing the pedals likewise.

He has to go back for his post op appointment on Tuesday. We are taking the Senior van. No if's, and's or but's!

Thursday, May 15, 2008

Spring Fever

More springtime flower pictures

Ah, a Cascade Mountain Spring!

Feeling some improvement

I am not sure why, but I am starting to feel "some" improvement in my recovery from my spinal cord detethering. Even though it is minimal, I'll take all I can get!

I am going on six months post op. Anyone reading here regularly knows it's been a tough road for me. However, the last three nights, I have slept all night in the same bed (usually get up and ramble around the house after taking a pain med, then go fall asleep in the guest room so as not to wake up my husband). Three nights in a row! Must be a record of some kind!

Also, I am not feeling that horrible burning on the sides of my hips like I was. I am still doing things, especially some stuff outside gardening, pulling a weed or two. I expect to feel that hip-burning at night....but I haven't been! Perhaps it is a sign things are healing. Perhaps it's because I stopped walking across the road in the woods, because Dr. B told me I should be walking on hard surfaces. Whatever it is, it is definitely a welcome improvement!

New collar, great help

I wrote this last Monday, but never got a chance to post it here:

Um, wow...I just got back from the orthotists. Praise the Lord. I have been using a reg. Aspen collar for well over a year now and I know it's been not the greatest, but I had no idea how bad it was!

When I saw Dr. B May 2, he told me to junk the old Aspen and get the new Aspen Vista and wrote me an rx for one (plus the new Johnson CTO)... The orthotist is 75 mi away. I figured I had to go there, get fitted and come home, then go back (who knows when I could do that because of my husband's foot surgery this week) and get my new collar.

I so messed up getting there, I've never been there before and don't know the city that well. I googled the place and printed out directions and a map, and we ended up in a residential district-- all houses. I didn't even write down the orthotist's phone number! And I forgot to bring my prescriptions! And the claim adjuster's phone number!

I pulled over (well, my dh did) at a gas station to use their phone book. Holding my cell phone in my hand, I dug for quarters for the pay phone. My injured brain has been doing this a lot lately, going to the "old way" of doing things. I got the number and called and got directions, we were close.

And thank you Lord, everyone was so nice and professional in the office, the orthotist came in with the new Vista collar!! Unbelievable! I thought I'd just get a fitting! The Johnson will have to wait. Anyway, even tho I didn't have the scripts or authorizations, they treated me royally and I came out with the new Vista collar. My complaint of the old Aspen was NO occipital support and I need that so badly since I had atlanto occipital dislocation.

The old collar seemed to cause my head to "schlump" backwards onto the posterior of the C1 and then put me into a painful sleep, or just make me feel neuro and horrid all over! This new collar is a breath of fresh air! It's lighter, looks neater, has a bigger hole in front for air flow, is a prettier color (green) but best of all, it supports my head exactly the way it needs to be.

I've had it on now for three hours and I love it. I'm not saying it is comfortable! But I can stand that if it keeps all the neuro feelings at bay. And so far it does. My biggest hopeful thought is this: If this good collar can make this big a difference, how much better will I feel with the hardware of a fusion, with the extraction having taken place first? I'm really thrilled! Anyone in the old Aspen, ask your doctor about the new Vista, it's all that and a bag of chips (well, at least for me.) thank you Lord Jesus!

Today, as I post this, it is 4 days later and the collar is still a big hit. Tomorrow, my husband goes to the big city to get his foot/toe operated on, and I know this collar is going to help me a great deal.

Sunday, May 11, 2008

No there's time

A dozen or more years ago, I suspended a green, woven hammock between two trees in our backyard in Washington state. It was the fourth year in a row I'd hung up that hammock.

It was also the last year I strung it up.

To a fault, I worked too hard all of my life. My father used to say about me, in front of me, "She worked like a man all of her life."

I stopped hanging up hammocks because I simply never once laid down in one. I dreamed of doing so and knew the dreamy state awaiting me if I'd only succumb, but somehow, built into me, was a satisfaction in hard work, a job well done, the instant gratification and reward of looking upon something completed.

We all know ourselves better than anyone else possibly can. I knew that I would never start a job but what I'd finish it. I'd never ask someone else to do something I could do myself (chalk that one up to Yankee upbringing). I'm sure it took years off of my life, but it also added a wealth of experience and memories. So, I guess you could say it's a wash.

I wouldn't stop for a swing in a hammock and I wouldn't take the time to put conditioner in my hair during a shower. Now, how pathetic is that?

However, consider the way I am today. A forced state and one at times that I truly appreciate.

Some of the things I now notice more than ever before are birds. Oh, I always noticed a covey of quail as it trooped across my path, the children with "question marks on their heads" gossiping amongst themselves and spooking my horse. I took note of the buzzards over a far ridge and felt the urge to ride over and check out why they were circling. I listened with awe to the night owls in the cottonwoods outside my window.

[side note: here's something I learned recently. You country folks probably recognize the fur balls left behind by owls, right? Well, my neighbor tells me that there is a lab near here which will purchase all the furballs you will bring them. Hmmm. You must wonder why, as I also did. Lee told me that they buy them because inside will be intact skeletons of mice and other little animals that the owl critters feed on and swallow whole, and these skeletons are used in classrooms. Now THAT'S not something you expected to learn today!]

I am not walking across the road for little hikes anymore. I will again someday, but my surgeon told me that's probably not what I need to heal. So, if I can't go to Nature, Nature comes to me!

Little chickadees are here now. They were not at our feeder this winter, but they are back now, along with goldfinches and hummers and a couple of varieties of small birds for which I do not have a name. And the occasional Stellar Jay, looking monstrous next to the wee wingers that usually inhabit the oaks outside our living room window.

I now notice the courting dances of the smaller birds as they loop and swirl quickly chasing each other and playing hard to get. I see them next inspect my birdhouses, though I'm not sure any have taken up residence yet. Their forms flit outside my peripheral vision and cause me to turn my head painfully to catch a glimpse of something that has somehow become important to me.

A treasure found.

Saturday, May 10, 2008

The Old Days

Here's a few photos from my checkered past. That's my horse, Shadow, when he was young and we worked hard in the mountains. That was my life for a long, long time!

The other is of me driving a vis-a-vis carriage pulled by a registered Percheron mare named Lady. I used to drive that carriage or a wagon pulled by a team around the ranch most weekends, and also in parades in town.

The old days.

I am starting to again have new insight and compassion for older people, as they cling to the old and have trouble grasping the new.

I can only attribute the following to my brain injury. I am starting to notice that my mind jumps to things of the past, the way things "were" done. It's not something I plan to do, it's where I end up, and then sometimes must struggle through.

For example, in my mind's plan, when I arrived in New York and needed to call a cab, I saw myself going to a pay phone to call. In the end, I didn't need to call because my sister met me at the airport, but later, I realised that of course, I have a cell phone. I'd done a lot in my trip-preparation to order new minutes for it and pack the charger and be sure it was charged up!

I also would forget that I could use a credit card, and worried about cash on hand.

This is a fun one. The other day, folding my pajamas after they'd dried, I placed them under my pillow! I have not done this in many, many years. But it was fun to remember when, as a kid, I used to keep my PJs folded neatly under my pillow after getting dressed in the morning.

Ah, the good old days. I'm old enough to remember when there was no toothpaste. Yes, there was such a day! I recall we had "tooth powder" and would shake some of it into the palm of the hand, wet the toothbrush, and the make a paste with the brush, powder and water in the hand.

I grew up with an outhouse out back. There was a time when I was behind ANYONE in line in the checkout who was writing a check, that this really seemed to slow me down. That was not because, as it is today, I could use my credit card. It was because most everyone used cash.

I used to be a grocery checker when I was young, and there were no scanners. One needed to remember the prices and then manually punch them into the machine.

Anyway, just some fun musings back in years and time.

Happy Mother's Day, one and all. Don't forget to call your Mom!

Wednesday, May 7, 2008

Meeting with Dr. Fu

Today, I met with my hematologist/oncologist to discuss my super-dooper-Binford2000-new&improved bone enhancement treatment plan. I actually use the old stuff, pamidronate via 3 hour IV drip, for my bone-buildup. It is what works for me in my situation with the pre condition to multiple myeloma.

I explained what Dr. B had requested when I saw him last week. Dr. Fu is right on the ball with what we'll do in order to give me the best bones that I can have.

IV pamidronate treatment once every 3 months.
A Bone Scan again in a few months (I had one a few months ago).

So, combining this with what Dr. B told me, we'll see how it looks after a year, see if progress continues on the scan or if it plateaus. Watch how I'm doing. It's the best we can do. Dr. B says I will benefit, as well, from the new hardware they are just now beginning to use.

My life right now feels to be starting to spin faster than I want it to. Lots of doctor appts again (I had a few quiet months); new braces and equipment and therapies; plus my husband is having foot surgery soon. I don't know, suddenly my brain seems over full and I wonder if I can deal with it all.

But from past experience, I know I just need to take baby steps with the Father holding my hand and trust, trust, trust.

It's odd, but since my tethered cord surgery, I compare everything to that. If I need to do something I'm unsure of, I remind myself that I went to NY alone to have a major surgery and I survived, I got through it. It was rough, but I made it. I can hardly believe I did! So, I know I can make it through all of what's ahead.

Do I attract them or what?????

What a story this will be to follow the one I wrote previously.

Today, I was in the grocery store. I was wearing my Aspen collar. I slowly worked my way through the aisles (grocery shopping is a challenge because of the shelves and people and thing, I get nauseous and dizzy and confused easily) and as I came down one aisle, it ended at the FRONT of a check out line. My choices were to go back way up the aisle, across two, to end up back at the proper place in the checkstand, or...

There was a woman in the line at the checkstand. She'd already checked out because her daughter (or whoever she was) in front of her with a different basket was paying for all of it. The woman had one small rolled up carpet in the basket.

No one was behind her. She looked healthy, about 75.

I smiled and asked her if she could just back up a step or two, then I could squeak past her.

You won't believe this.

She said, "Why don't you just go back up that aisle and back the way you came?" But it wasn't a question, it was a statement. The words said, "I'm not moving." No, the words said a lot more than that to me, but I'm trying to be gracious here.

I admit it, I snapped back to her, "Because I am disabled and that's a long way! But never mind!" I turned my basket around and on my painful feet, went back up the aisle and ended up right behind her to begin checking out.

I wasn't sneaking in front of anyone in line. I wasn't trying to cheat her out of her place. Her daughter had already paid for the carpet in her basket. She only had to take one step backward (because her daughter's cart was blocking any forward movement) for me to slip past her and save who knows how many steps for me. I had asked with a nice smile.

I can't believe it! She had a grandson who worked there, I guess, he came up and "Oh grandma, I love you," all sweet and she was so sweet back to him. I was incredulous. I asked the checker when he was taking my credit card, "Can you believe what that woman said to me?"

I'm still so unbelieving. How could someone be so cruel?

Yes, later on, I prayed for her, but it took me awhile. I'm still (inwardly) shaking my head over it.

Monday, May 5, 2008

Somewhere between Minneapolis and Seattle

When I first boarded the airplane and walked back to 45E with the other folks who needed "extra time boarding," I saw that my seat, selected as a window seat at purchase, was actually in the middle. Arranging things and hoping for the best, I sat and waited for my seat mates.

A nice gentleman came up with that look we all know: "that's my seat" as he looked from me to the window seat next to him. I asked if he would mind switching with me since I am handicapped. Graciously, he said no, of course not, and I moved over into the window seat, leaning my cane against the wall tidily...taking off my Aspen collar for a cooling moment before takeoff, stowing my rolling backpack under the seat in front of me.

However, another woman interrupted my thoughts asking, "Are you supposed to be in that seat?" It turned out that the gentleman next to me was in the wrong line of seats. I asked her if I could switch with her (I was already settled into her seat) since I was disabled, etc. She said, quite unbelievably, "I'd rather have the seat I chose for myself."

I couldn't believe the heartlessness of someone who had been pleaded with by a disabled person. I had to put my collar back on, strain my neck area and skull base area (remember I'd just been told by my surgeon that my Cspine could slice through my spinal cord during an MVA) to reach down and get my backpack, slide it back down under the middle seat in front of me...pick up my things, including my lunch I was trying to eat....cane etc...and then slide out and stand up so that this person could get into the seat she had selected for herself.

Other passengers rolled their eyes at me, also unbelieving at what they'd just witnessed. When I sat back down, I did say to her, "I chose a window seat as well, but when I got my ticket, that's not what I got." She chose to completely ignore me.

I sat all the way (3 hour flight) with my arms pinched forward holding onto my cane so it wouldn't bother my seat mates and because she was fidgeting constantly turning pages in a magazine with that left elbow of hers poking me so much I got bruised.

I wrote this poem on the back of an envelope on top of my tray:

I was once strong like you.
I strode out with arms swinging
I helped my elders and weaker others
I lifted heavy things, for me and for
those who needed burdens lightened.
I was thin and strong and no mountain
looked too high for me to climb.
No distance too far
but what I knew I could do it.

I was smart once, too. I am still, but my disability clouds who I am in your eyes.

And now, I am weak and need your help.
Need you to see me, to understand without pity
or disdain or superiority.
Need you to see me as your peer, only slower than you.
Need you to smile at me and not look through me.
Need you to slow down, to be in step with me--
not carry me or wheel me, but just
slow down

Because life here in the slow lane is not all bad
And in this world of pain and confusion and
nausea and weakness and crawling,
strength can be found...enough for both of us.

I am no hero, but I am a champion.
Each minute, I must find a way
to stand on weak legs,
to squelch nausea,
to understand my surroundings,
to breathe, to swallow, to think,
to see
to put on a good face

I might be stronger now than I was back then,
when my world sped by and each minute full of throbbing
life, pounding hooves, big hearts, steep trails.

I might be stronger than you.

Back from my Neurosurgeon consult/testing

Well, first, it's great to be back. I was very sick one day while there...then very sick on Sat and Sunday. Feel like a million today so far, thank God.

In a nutshell (though it took at least an hour for me to grasp/gather it all while talking to Dr. B)... The tethered cord release allowed my brainstem and cerebellum to move back up into normal! Good news!

We talked a lot about my situation with the C1 frx and occipital condyles dislocation. Dr. B showed me what those are in his anatomy book, I was glad to learn. He warned me to avoid MVAs, said my C1 could slice thru my spinal cord.

He said MY brainstem compression comes from the C1 ring (the brainstem/spinal cord runs thru that), not anything to do with my odontoid/C2 pressing against it. That was new and interesting and I also learned a lot of other things, even about CM etc.

I am to work with my local bone doctor and get my bones up to what he feels is the best shape they can be given my osteopenia...THEN when I feel I'm up to the risk (and Dr. B says I will reach that point), we will do the fusion. He said he may open me up and try a screw into the bones and if they are poor, he'd just close me up and no fusion for me.

He said, tho I am a surgical candidate from now til eternity, I'm not getting any younger, and also we want him to be around to do it (AMEN!)

I asked why the more I do, the less I can do. His answer was brilliant in its simplicity: you are doing the wrong things. I came away with six scripts for inversion table therapy; an air type cervical traction unit; a new Aspen Vista collar; a Johnson CTO; PT therapy. He wants me to try ellyptical and water therapy. I am willing to try it all. He said they are trying now to get people more into shape in their cervical areas before doing fusions now. Makes good sense to me.

He said several times that my situation was special and once he said it was "off the charts unusual." He said that when someone's OR report is longer than 3 pages, that means it was a very difficult, and mine was six pages. He highlighted all the things that gave the surgeons big headaches and made the TC surgery 7.5 hours...including a very thin dura so they had to take autogenous paraspinal muscle tissue from various places and beef up the areas where the dura was so thin.

It was well worth the trip and agony after the trip to get things firm in my mind. We took him some NH white chocolate! My sister gets it in NH, where I grew up.

So, for me, bottom line: don't walk on hard surfaces etc, only do elyptical training and water therapy. Do cervical core strengthening (hope I can do these things, I've not been able to in the past and I've done a lot of Cervical core exercises!). Work with my hematologist/oncologist to get my bones into the best shape they can be.

Then, when I am ready, try the fusion. I have an appt for Wed. to share this with my hemo...I want so badly to be better and will work as required to get there, if it's possible.

thanks for your prayers for me for my trip. They worked, all went very well and no lost luggage! I so love Dr. B, he restored my hope in being fixed in the future. I got a lot of HOPE back after talking to him!