Saturday, March 7, 2009

Saturday drive

Dr.B emailed me right back, saying the surgical coordinator would contact me and set a surgery date. I'm so glad. This is none too soon. In fact, it is 5 years past the date of my injury (Lisa, Laurene, can you believe it's been that long since you came to see me lying in bed and speaking v-e-r-y slowly?) and it is 1.5 years past the date I had my tethered cord surgery, when I thought I'd be going to NY in another month to get the fusion...a long wait...

His saying this shows me clearly: no more obstacles. Unless pre-surgical testing throws a wrench in the works. I was afraid he'd say he wanted me to have a few months of Forteo (I am now giving myself daily injections of Forteo) or something.

I feel right in every way about this. I know this is the time. I'm getting worse.

Today, we went for a drive and it was so incredible, the scenery while listening to a great CD, one that just came out with 50 cowboy poets and musicians from the first 25 years of the National Cowboy Poetry Gathering. The music took us back to places and times spent with so many friends. I attended this event for 13 years. I can't go now, because of my health, but oh, how I miss it. The music just transported us as we drove along with glorious Mt. Adams luring us in a north-westerly direction.

We stopped for lunch in the very small community of Glenwood, very near the mountain. The winds coming off the peak was powerful and it shook the little cafe. Mt Adams, by the way, is the US's largest mountain in the lower 48, in terms of mass. It is high (higher than Mt. Hood) and snow-covered, but it is also very wide around the base. This gives it the most land-mass. That is the old fellow in the picture above with a comet flying past. This is about how close the mountain looks to the town I live in.

We drove on home a different way and every where we look in this area we live in is breathtaking. Waterfalls were abundant...wind on the wide Columbia whipped up waves as if it were the surface of a stormy ocean we were viewing.

We were gone about 3 hours, I wore the CTO the whole time I was in the car. I have to take it off to eat, it's very difficult to try to eat in it, as it has a chin rest and limits how much the mouth can open. I knew things were hurting...I knew the instability combined with the rocking of our car (tho' it's a nice, smooth car)...going around mountain curves, it was all a bad combo.

So, as soon as I got home, I laid down for two hours. I couldn't sleep, the pain was too bad in the back of my head, even though I was loaded up on oxycodone. Then, I got a familiar sensation, and though it is familiar, I was feeling it at an odd time.

I've written here, I'm sure, about the sensation I get when I get worked up, stressed, too happy, any emotion or excitement, no matter how small. It's a burning, prickly feeling all over my head, and I get sweaty from the neck up. No other part of my body is hot or sweaty, only my head.

I always get this when I allow emotion of any kind (like when I learned the good news on my test results, I could not allow myself to do a "happy dance" or get too joyful, I had to have control over such things and smile and just be glad)...or also, when I try to do some housecleaning. I have taken my blood pressure after these "events" and it is always spiking and for no reason. This seems like a classic example of "autonomic dysreflexia" but I have not had a firm diagnosis on this yet. That is what I'd hoped to find when I tried to go to the new neurologist last week.

Well, today, it came on at a very strange time. I was lying in bed, I was awake yet very calm, not thinking anything "stirring," and I had no reason to feel stressed or happy or sad or whatever.I have had this triggered before just by thoughts of slight excitement or sadness...but this was not what was going on. I was more drowsy and resting...

And it all overcame me. Painful hair (piloerection); prickly scalp and painful burning all over my head, and that sweaty head too. I am sure my BP spiked. And there I was, I'd been lying down very still, very calm and peaceful, for 2 hours! Absolutely nothing brought it on.

When I studied AD, I found that 80% of quadriplegics have AD. Now, I really had that sense that I know what they experience. They are not moving...they are probably lying in bed, and have just a full bowel, or a contricted catheter, or even a non-toxic stimulus like I had, and the BP spikes, and these classic symptoms occur.

I got up from bed and went into the living room and sat down in the recliner, and that seemed to help.

Like I said, it is none too soon for this surgery. I think God is letting me know clearly: it's time.

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