Thursday, August 6, 2009

Livin' in the city, part two

I woke up at 4:00 am today and, feeling kinda smarmy, I arose, took a pain pill, then laid back down in the guest room, where, suddenly, the pain washed over me in a tsunami of sensation.

I couldn't read anything and I couldn't sleep, so I finally got up and let the dogs go out for their morning ablutions.

I opened the screen-door. Within the passing of only a few seconds, as the killer-dog, Mickey, burst through the opening, I saw such an incredible scene like the flashing of a slide show upon a screen.

Over our fence, in the neighbor's yard, there was a group of about eight deer. I don't know if they were young or old or bucks or does.

But it was their ritual, performed in those haunting moments between the full moon going down and the eastern sky taking on a pale hue, that struck me and is with me still. It was, I imagine, something not usually seen by the eyes of us lowly humans.

About six deer milled around tightly in a circle, and, from the center of the circle, two other deer stood up very straight upon their hind legs. Facing each other, they were boxing -- in play, I presume. Striking out with their front hooves, perfectly balanced and facing off like Frasier and Ali.

Thrilla in Manila!

I'd seen things like this in the woods before and on Animal Planet, but what was different was how the other deer, not involved in the boxing match, were mingling in so close to the ones who were.

Then, seconds later, my murderous, standard-sized Dachshund spotted this scene and charged it for all he was worth without respect to the mystical goings-on. His loud yapping spooked the small herd which suddenly abandoned its play and took off for the woods across the road.

I'll never forget that sight!

Here I yam!

Here's a photo taken of me near Great Neck New York last June.

Yukon Bound

A month ago, I put together a vacation for my husband and myself. I know, sounds pretty silly when it's getting so hard for me to walk and do things. But, after years of hearing my husband say that he wanted to see Alaska and he wanted to go to the Klondike, I was inspired to put it all together, while I am still mobile enough to go.

We will leave in early Sept. and fly to Seattle and then to Juneau. From there, we'll ferry to Skagway, where I have rented a log cabin in the woods for five nights. I can't wait!

Our cabin sits right along the Chilkoot Trail, where thousands of poor souls started their treacherous journey to the goldfields of the Yukon. If we feel up to it, we can drive from Skagway up over White Pass, to Whitehorse and then back down to Haines, Alaska, then ferry back to our cabin at Skag.

How we will enjoy investigating the historic buildings of the Gold Rush era in Skagway and Haines and Whitehorse, drinking in the mighty mountain views, watching for whales as we sail 6 hours north of Juneau! I'll be sure to share some photos when we get back.

hindsight is 20 20

Looking back now, I can see where it's been coming on for quite some time.

But I ignored it, figuring if that was my only problem, I can live with that.

I'm talking about the weakness in my hands and arms.

I knew that it was getting hard to open jar lids or bottle tops...that cutting anything like a block of cheese with a knife was getting difficult. That way of holding the knife lends itself to excerbating the weakness...really shows it up.

Now, my hands are weak all the time. Cutting a slice of cheese off a chunk is nigh impossible. Using a can opener? No can do. I've become much more aware of turning door knobs


Holding a newspaper up to read it.

Or a book while lying in bed.

Holding the phone. When I'm done talking to someone, my hands and arms hurt so much.

It's not a stretch of the imagination and it didn't take an old Indian tracker to see this one coming. Because, when I regained consciousness after my injury, I felt the electricity zapping through my arms down into my hands, and down my legs into my feet. I prayed to not be rendered paralyzed and that prayer was answered, thank God.

After my horse wreck, I did have problems with my arms. If I used them, they'd get painfully itchy, and also have lancinating pains sparking here and there throughout them.

That horrendous, central nervous system itch went away for awhile. And it didn't seem like my hands were the main problem and I was able to continue on to some extent.

How I'm wired is that I will "do" and keep on "doing" far past signs of pain or weakness. So, there is no excuse for my weakness to progress, unless it is from the spinal cord. I mean, I am my own physical therapist and I keep as active every day to the extent that I can, and even past it, some.

So, today, the pain and weakness was very evident, and I had to avoid anything where I was using my hands.

Have you ever tried that? Of course, many of you know exactly what I mean. But when you can't type or wash the counters or pull weeds or hold a book or even a water hose, then there isn't much to help the time go by.

It's been a long day.

But...I am so thankful I have this appointment coming up. I'm so happy that someone looked at my imaging and saw something he could help. I can't wait until Sept. 16.

Followers of this blog have been down this road with me before. Same ol' story, different doctor. Different city.

I'm not jaded but I'm wary.
If I were cynical, I'd not arrange the trip.
But having been through what I have so far, it takes its toll in trust and faith in mankind.

Of the medical type.

Sunday, August 2, 2009

A new day, a new month, a new plan

This will be short.

I am so weak, my hands are hurting and numb and not going where I want them to. But want to update my friends.

I have an appointment with a new neurosurgeon, Dr. Fraser Henderson in Bethesda, MD

I'm quite excited to see him. I sent my package with the CD of my 2 month old imaging done in NY; a 4 page letter of my background and history; and a 2 pg symptom list. He reviewed it and had his secretary call and ask me to come see him.

I'm going on faith, believing that this man, whom I've heard wonderful things about, would not have me fly from WA state to MD if he did not feel he had something important to tell me and could offer me some help.

This is a new plan, a new direction. After 3 years as a The Chiari Institute patient, I did not want to leave their care. Dr. B is a brilliant neurosurgeon, a lovely man, and I was honored to be his patient for that time. But...but...he does not offer me any hope or help or surgical treatment. His opinions have changed. But my symptoms have not, except that they are increasing and intensifying quickly.

I feel I need stabilization at the skull base. He does not feel I need it. I'm choosing to seek another opinion. I could write pages on why I feel I need it, why I am unstable, etc...but that can be found in the time since this blog began, on every page.

It's been hard for me to post this here because I do not want to throw any disparagement upon TCI or Dr. B. This is my personal situation, my choice. It has nothing to do with anyone else's situation.

So, I'm looking forward, not back. My appointment in MD is Sept. 16.

Again, it's a journey of faith. I don't need to spend the money on another flight and hotel. I don't know where I'll find the strength to make this trip alone. But I know God knows, and I know I can't continue on this way, getting worse each week. The implications of this direction are too foreboding. And I don't feel ready to give in and give up.

Besides, the pain is just too awful. I need some help.

I was launched off that big, speedy jumping horse over five years ago. No one has helped me yet. No stabilization whatsoever. No surgery at the skull base/C1 level. In the beginning, I was given a small, flexible collar and told to take it off in 6 weeks. Later, as a TCI patient, I was prescribed rigid collars and cervical thoracic orthotics (CTO). But these do not keep my skull from settling, and, settled, it has!

God must have a plan for me. I'm just trying to follow this, one step at a time. This really doesn't feel to me like I've gone back to square one. I am not upset with anyone. I just feel God had a change of direction in store for me, and so I'm off and running. Well, metaphorically, that is.

Wish me well, say a few prayers for me. I will let you know what Dr. H says. I know I'll be in good hands, I have a sense of strong trust in this man, though I have not met him before.

Thanks for coming along for the ride!