Thursday, September 30, 2010

a picture I like...

Here's a picture of me that I like.

And like many people, finding a picture of myself that I like is danged hard.

This one was taken by my husband where we last went camping. We were out in a field walking the dogs, in the rain, and I was wearing his bulky but comfy and secure flannel shirt. For me, I see myself out in the woods, in the mountains, a high mountain meadow, with my animals, and I feel like "me." It's been a long time since I've felt that way.

Monday, September 27, 2010

Life is just too hard...

I hate to complain here, but truthfully, life is becoming too difficult for me. Just little things are a burden to do...returning emails, calling my mother, grinding the dogs' toenails, watering the tomatoes outside...mailing a letter or card.

Anything extra seems so onerous and I think it's because just keeping up with the daily duties of household life take up all the energy and time that I have. I'm getting to where I often have to empty the dishwasher (and fill it) in parts and pieces...empty the top drawer and then close it all up and come back later and do the bottom drawer.

Typing has become harder, my fingers and my brain are not talking to each other as well as they could. And typing things you don't mean, and going back to correct them, just a little thing like that tires me out no end.

I've been doing some reading of medical articles on my C1 fracture etc, and seeing how weakness is a big part of the broad spectrum of symptoms that accompany spinal cord injury/brainstem injury. I am sure I've read that before, but I read it like its new, and I think, "All those years of trying to get doctors to understand that my weakness is not because I am out of shape; it's not because I need to get back to exercising and build up strength. I used to try so hard to convey to them the type of person I am and that I will "do" just as far (and even further) as my body will allow me to do, each and every day."

Maybe those doctors knew all along that profound weakness is part of SCI, but they would not tell me, and they'd let me try to plead my case that I'm not malingering, I'm not lazy, I'm not so much out of shape as I am profoundly weak.

I know I need to have the surgery. But I am at such a loss to make it all happen. I thought there was a skull base specialist in Seattle, but I looked more closely at his bio online, and he is a plastic surgeon. I did not trust the doctor who offered me surgery in Portland and I can't put my finger on why. It's so hard when you have something rare and you don't know where to turn. But I'm getting worse and worse.

I've learned that you can have a shiny, new mobility scooter and want badly to ride/use it, but you have to feel well enough to do that first. Whatever is hammering away at my brain and body usurps my strength and pours on the pain, like coal being shoveled to a steam engine.
Pour it on! Chug, chug, chug. This painful weakness rules every single day of my life, and the only thing that keeps me going is knowing that from time to time, I will have a few minutes where I'll feel good enough to empty half of the dishwasher...or call my mom.

Tuesday, September 21, 2010

Flowers from my August flower garden

Our campsite at Lower Creek Falls

My husband and our restored vintage trailer on its first outing!

The photo below is of Lower Falls on the Lewis River in WA state. The picture doesn't have much reference for size, but the falls are about 50 ft. high.

Fall is here!

Tomorrow night, Autumn arrives! What a wonderful year it has been. The weather has been just the way we like it, mostly cool-ish!

Since I last wrote, we took our trailer on another little camping trip and had another great time. It rained all of the first day as we enjoyed a great campsite in the empty "Mt. Adams Horse Camp." We were all alone there. What a great setup this is for horseback riders. High-lines to tie your horses safely, without damage to trees, are set up at each of the campsites. What a great place that I would have enjoyed with my horses "back in the day."

We are planning to go back there in a couple of days. This time, we hope for blue sky and fair weather so that we can see the mountain looming over the campground, a view that was hidden by low-lying clouds when we were there 3 weeks ago.

This time, we'll take our "recreational vehicles." I finally have my scooter, which I call my "buggy." It is a Wrangler, by Pride Mobility. And it is perfect for country livin'. I have not tried it out much because I just have not felt very good. Lots of the usual pain and incredible weakness, just doesn't allow me to feel foxy enough to go out and play.

My husband bought last weekend a "Hawg Ty." Now, I don't expect my readers to know what that is, as we surely didn't know. But it's a squatty, fat-tired tundra motorcycle. It's light enough to go on the rack on the back of the trailer (my buggy fills up the entire truck bed. I forgot to mention that I also got, thanks to work comp, a hoist that is all programmed exactly to move the right way and amount of forward and back and side to side to gracefully and quickly put my big buggy into the pickup bed, or take it out). The Hawg Ty has a small stationery gas engine, something like a little Honda power plant, it is 5.5 hp. It has a pull rope start, like a lawn mower.

My husband has felt like a big kid with this new bike. He used to race bikes, including flat tracking, and also has been a motorcycle lover all of his life. He also has a "V-Max" motorcycle that is a fast hunk of iron! The Hawg Ty is so cute and my husband drives it around and around our house, looking like he has a little track already, and he always is wearing a big, ol' smile.

So, we'll take the Hawg Ty and the buggy, which has all-terrain tires, to the campground and maybe we can drive around the dirt roads that flank the open meadow there a bit. My scooter is electric/battery and so whisper quiet.

On last Saturday, we took it into town to see the car show, and it was so easy to unload and then drive a bit. Due to having the scooter, I didn't have to walk the 4 blocks to see the antique cars, so that is really a God-send!

Oh, other news is that I'm losing weight. Such a blessing!

I hate to admit it, but the last time I was weighed at the cancer center, I weighed 192.6. I've been inching my way up gradually over the last few years and attributing it all to not being able to exercise. I felt like I really couldn't lose weight, and that I was just doomed to being "obese" (as the doctors so rudely put in their reports!).

I've never really been overweight in my life because of my career in training horses. But I had accepted my weight and the fact that I kept having a harder and harder time finding clothes in my closet that would fit!

Suddenly, one day, I felt inspired to go on a diet. It was like I was given the diet to do, from God. And the will to do it. Because I know first hand that my will power is not worth a hill of beans! But God gave me the direction and the staying power, and I knew it. As I stuck to the "plan" for one, then two, then three whole days, each day I thanked God for it, and asked Him to keep me going.

So, what the "plan" is is simple. I write down everything I eat and the calories that food item runs. And I keep to 1000 (or a little more or less, but never over 1200) calories a day.

I had read somewhere that it takes 2500 cal. for someone to simply maintain their weight. So, I figured that even without exercise, I should be able to lose some. I'd be happy with any weight loss.

And my goal is to lose a significant amount by Oct. 1 when I next go to the cancer ctr for my pain mgmt. appointment, where they always weigh me.

Well, I didn't weigh myself until I had been on the "plan" for two weeks. I didn't want to be discouraged if I wasn't losing. When I did weigh myself, I was shocked to see that I was down ten pounds in just two weeks! I was at 182! I had already met my goal, because in my mind, a significant weight loss would have been ten pounds. What a blessing!

So, I weighed myself the other day in the thrift shop where there was a nice set of scales for sale. And I was shocked to see I was down to 170 already! I'd lost 22 lbs in three and a half weeks, without being able to exercise!! Thank You Jesus!!

What fun it has been to be able to wear my clothes and they are loose and comfortable. And shirts that I wasn't wearing because they were too snug now fit easily. This has been such a big thing, a big blessing in my life, as I'm sure it is to anyone who loses weight.

My goal is to get down to my "riding weight"... the weight I was when I got hurt back on April 9, 2004. I was 148 lbs then, and that was a good weight for me. I never thought I was thin back then, but when I looked at old pics of me then, I WAS thin and didn't know it.

So, I have 22 more lbs to go and I know, with the help of Jesus, I can do it.

I have not been feeling well, as I said. Lots of neuropathic pain, and pain in my head and upper neck, shoulders and upper arms, legs and feet. Same ol', same ol'.

But I can tell that it is easier for my body to carry me around with less weight to deal with. I can now step up onto the cottage-stone wall/flower bed in our back yard, and when I do it, I can literally feel I am lighter to get up there. Nice to have this reward of a job well done when there is so little I can do.

Each day that I can, I have been digging up irises that were planted by the previous owner of this place up on a hill behind our house. Which would be nice, but it's too hard for me to keep that area watered or to go up there to tend any landscaping. So, it's my plan to work when I can, and only for as long as I can, and move any plantings up there down to the flower bed in the back yard or ones in the front yard close to the house. I feel this makes a lot of sense: it's so much easier for me to tend these plants, and they are more visible and more likely to be enjoyed when they will be closer to the house. It's very rewarding, but I just work 30 minutes at it, and the sweat pours off my forehead and my arms become amazingly weak and I get to feeling like I have a wicked flu, all over my body. I should be used to it, it's been six years...

One of my readers, Lisa, lost her good horse Fancy the other day to colic. Lisa, I'm so sorry about your loss. I wish I could have come down and watched you ride her. I know your heart aches with emptiness and I pray God will get you through, as I know He will.

I will post a few pictures here now. And hope to have some nice pictures in a few days when we get back from camping with our "Casbah" (the model of our 1969 Alladin trailer).

Thanks, dear readers! And thanks to all who have posted comments here...your comments keep me going!