Monday, February 15, 2010

It's 11:03 pm...

and I can't sleep...again. My legs and feet are on fire. I can't hold my right arm in the correct position to where it doesn't pull down on the skull base and hurt. I can't hold it there because there doesn't seem to be a right position. I might as well get up and catch up here a bit. I've noticed, though, that sitting here and typing is more and more uncomfortable. I guess I've mentioned that before.

Feb. 8 was the date of my work comp hearing and I was very blessed in that they found me 100% permanently disabled. Or, I should say, permanently 100% disabled. This is durn-near miraculous. I've been told by several professionals who should know that hardly anyone is found 100% disabled in California work comp. I thank God for a fair decision. It IS true, I simply cannot work in any capacity or earn any money at all. All due to the work-related injury.

So, that was a mighty "Praise the Lord!" It means, simply, that the bi-weekly paycheck I've received over the last "almost six years" will not stop, it will continue as long as I live, and also all medical care will be taken care of. If I'm not to be healed, then this is the best I could wish for. Thank You, Jesus!

I've had a rough month. It's hard to come here and write about it. About two weeks ago, I went one whole week without going out the front door. I didn't get dressed and I stayed in bed a lot, just from pain and weakness. When I did finally get out and about, just walking through a couple of stores shopping was enough to flare up all my spinal cord symptoms again.

But then, those symptoms and that spinal cord are just staying flared up. I can't really get away from it. I've decided that I am going to push for a motorized scooter. I saw one last summer at a car show, a woman who told me she suffered with MS was riding around the show on it, her husband walking beside her. It was a perfect little outfit, not big or heavy. They said it came apart into two pieces, was only 35 lbs, and was easy for the husband to pack in the trunk of the car and get out for his wife.

My husband doesn't like the sound of it and I can imagine why. To him, it's giving in. He's afraid I'll stop walking at all and then he thinks my muscles will atrophy and I will really be a mess. After 36 years of marriage, I thought he knew me better than that. I will always work to whatever capacity I am able to do so. I'll always make my beds and fill the dishwasher and keep up with the laundry and keep the floors clean in the house, to the extent I am able. I'm not sure I'll explaining this right, but I'm trying to say I'll always push myself just as far as my body will let me do it. He's not worried about the housework getting done, he's just more concerned that I'll give up too soon. I know I won't.

But it would be nice to have the scooter for trips where there are walks involved.

I fill my days and they rarely drag on. About a month ago, I went outside and cut several long branches of forsythia. They are just bare branches, but I stuck them into a dry vase on the floor behind the TV. As I brought them through the door, I thought, "I have an armload of nature," and now, it feels like I'm sitting in the woods watching television.

That caused me to look around my house and notice that, unwittingly, I have brought nature inside my house. Before my injury, I lived my life outside, in nature, more than inside. I worked outside each day for 10 or 12 hours. One of the hardest things, as long-time readers of this blog will attest, has been accepting my increasing inability to get out into the woods and walk or just "be."

So, without thinking about it, I have brought the outside in. I have lots of little bird figurines, and I have branches stuck into vases, pinecones overflow the bounds of baskets. I collect the birch bark that sloughs off the trees in front of the Sodbuster's Cafe down the road, and use it to decorate things around the house. I paint mountain scenes on the closet doors and wildlife on other doors. I can look anywhere within the bounds of this happy home and feel my senses stirred by the land that I have loved so much. And miss so dearly.

I was pleased to receive in the mail a copy of a new resource book just published titled Cougar. They used my poem about a mountain lion, the only poem in the book. That meant a lot to me. I am blessed left and right.

In order to make a dreary winter (these leaden skies are tiresome) pass more happily, I have made travel arrangements for my husband and I to visit Alaska again, this time in May. Sky Miles make the trip very reasonable. I've rented a cabin for five nights on Kenai Lake. They tell me we might be the only guests at the lodge at that time of year, and that the lake will still be frozen over. What a time we've had reading travel books and dreaming about things we'll see, while we also watch a plethora of Alaska programs on TV.

I've had a few events of food "not going down" again. One happened yesterday as we were out to eat for Valentine's Day. What happens is that I forget to pay attention to my esophagus. If I don't pay attention and I keep chewing food and "swallowing" it and the food is not going down, it all collects into a ball of food (known as a "bolus") which is stuck right at the top of my throat. I don't have any gag reflex, so I don't choke on it or spit it back up. I have learned to not panic and just allow it to go down on its own. It can take a very long time. While it is there at the back of my throat, I cannot breathe through my mouth. It would be easy to panic about it, but I know if I did, I would require the Heimlich Manuever or I would die. So, I just allow it to do its thing and so far, so good.

It also happened a few days ago while I was absent-mindedly eating half of a dry bagel. Didn't notice the first bite wasn't going down. Kept packing bites of bagel back in there until..uh, oh! Well, keep calm and surely it'll go down, like it has before. Lord Willing.

Finally, work comp sent an authorization for the SPECT Scan. But they didn't send an authorization for the lumbar MRI which had been ordered at the same time. Since I have to go 2.5 hours to Portland to get those done, I want to schedule them for the same day. So, I'm waiting for that MRI authorization to come in the mail before I set the appointments up. The SPECT scan is the one where they inject you with radioactive material and then 2 hours later, they do a scan and, supposedly, things will show up that just don't show up in any other way. By now, I would guess the neurosurgeon in Portland has forgotten who I am, since he ordered the tests back in November. Ah, the joys of working with work comp!

We've had a very mild winter here. In December, we had a few snows, perhaps a foot of snow at the most. But rains melted that away quickly and it has been much rainier and foggier here than we've had before. I love my house, love being inside of it, its walls seem to wrap me in comfort and security.

My last trip to my PCP, a funny thing happened.

My doc and I were again talking about my pain. He has been urging me to go to Pain Management and I have been loathe to do so. Finally, I gave in. He stood up and walked over to me, putting his hand and fingers on my neck and saying, "Where does it hurt? Here?"

(That was the funny thing that happened. I've been seeing him almost three years now and that is the first time he's put a hand on me or asked exactly where my pain is.)

"No, I mean, yes, that area does hurt, but that's not the bad pain. The bad pain is in the middle of the back of my head, to the right of center. I get burning, electric stabs of pain there."

He admitted he didn't have a clue about why that would hurt. I wasn't asking him to figure it out anyway. While he had the interest, though, I wanted to explain the worst of my pain, even more brutal than the cattle prod in the back of the brain.

"I feel all the time so much burning and aching in every muscle, every tendon, every bone, every nerve, every cell of my body. Surely you must have MS patients who describe pain like this? I never have found anyone who says they have this sort of pain, and I would really like to know the right words to describe it. Surely you have patients who describe this?"

My doctor said no, not really. He'd never heard anything like that.

Wanting to somehow paint a word picture I'm not skilled enough to describe, I said, "Well, you know how the worst flu is? (he nodded his head). It feels like that plus the worst menstrual pain I ever had (and, Doc, I know you can't relate to that one), and I've had that every day for almost six years!"

He didn't say anything to that.

What can he say?