Monday, November 2, 2009

God's Grace and living with this instability!

Last night, lying in bed, I could feel every millimeter along the edge of the back of my skull, stretching from ear to ear. Like a big smiley face painted on the back of my head, this etching revealed itself in precisely-located pain.

And I know what I did...and I know the price is too high to pay, even for time spent in those woods that beckon me in those wiley whispers too hard to resist.

I've now been "upped" to 150 mgs of Lyrica, which I take at bedtime. This is not a high dose; it is, in fact, the starting dosage recommended. It seems to work to a small degree, but I'll take any improvement I can get!

Feeling a little better, on Saturday I snapped the leashes on the dogs and walked slowly down the woodsey trail, stopping at one point to lie in the sun on warm pine needles and watch a crow fly overhead. The dogs looked at me curiously, as if to question what was wrong that I would stop in the midst of a walk to recline upon a carpet of pine needles; once they were sure I was fine, they also laid down at my side though Mickey stayed alert and watched the woods, his wariness producing a regal posture, indeed.

Mickey is not yet well-trained to the leash and he is still young. So, I must gently jerk the choke chain back in order to remind him to stay beside me, or behind me if the trail is narrow. I KNOW that this action with my arm is NOT good for my skull base. Though it's not too uncomfortable at the time I do it, I know it is kinetically affecting the nerves in my upper C-spine...but I do it just the same. They are small jerks, not even "jerks" really. And remind me of the gentle tugs on the reins I'd given snaffle bit horses for most of my life. Such thoughts cause slight smiles to cross my face, and that feels good.

Sunday was another sunny, Autumn day, and I succumbed once again. Two days in a row. Yes, I succumbed and went the 15 minute loop through the oaks and Ponderosa Pine, needles and cones and wet leaves beneath my shoes.

Sunday night....the bill came.

Last week, I had a couple of episodes that surpassed the normal swallowing difficulties I experience. In one, I was eating, absent-mindedly, some Triscuits. Watching TV and breaking off little bites and putting those into my mouth, I failed to notice that the food wasn't going "down."

As I've written here before, one bite of food will usually move the previous bite on down the esophagus, but this time, it was all bunched up at the back of my mouth. Without a gag reflex, I was not choking or gagging and was completely oblivious to the accumulation of food, perhaps the equivalent of one and a half crackers.

By the time I became aware of it, it was a wet bolus of chewed-up cracker that was in the neverland between my mouth and the top of my esophagus (forgive me of there is a medical term for this area!). I could not swallow it, and I could not easily make it come back into my mouth. (for the squeamish, I apologize).

I was afraid to try to cough it back up, for fear that I would set off a spasm I could not control. I found that I could not breathe through my mouth and that caused a bit of anxiety, as nose-breathing wasn't doing too well, either. I got a little bit of water, and took tiny sips of it, which, thank God, started the food moving downward, a little bit at a time.

I could feel every bit of its journey south.

On Saturday, I aspirated. I have not done this in a long time. I was eating a small bit of licorice and when I swallowed, it went "the wrong way." We all know what that feels like! I did cough with this situation, coughing and coughing until I felt like I had coughed up whatever was possible to retrieve.

Aspiration is serious stuff. They say this is the #1 cause of death in stroke patients. Due to their brain injury, they also have difficulty swallowing, and some end up aspirating fluid into the lungs and develop pneumonia, which is becomes fatal. With no gag reflex, this is something I need to be on guard against. But whoever is 100% aware of the food they are eating and fluids they are swallowing 100% of the time?

Then, Sunday night. Last night, after the walk in the woods, which left me in so much painful weakness I was a blob in the recliner until the pain meds kicked in, I started noticing food was not "going down." Late in the evening, after taking the tiny oxycodone pill, it was lodged at the top of the esophagus, and wasn't going anywhere. I tried drinking water but that wasn't helping. I thought to take a small piece of bread or something to try to move the pill on down, but I was out of options. I knew the food wouldn't go down either. Finally, I (futilely, I mistakenly thought) took a little sip of water and that moved the pill south. I was able to go to bed, but as I wrote at the start of this post, I was SO hurting around the whole back-edge of my skull. After an hour, I finally did fall asleep.

1) This is brainstem stuff. No gag reflex. Swallowing problems like this. Having to sleep with a portable fan about 10" away from my face so it blows air into my open mouth and will keep me breathing all night.... I've continued to have this sore throat (since my injury...a long time!) but it is so much worse with talking. And I feel "sticking" of my diaphragm, but that has been a long-time complaint, as well.

2) If I feel up to walking in the woods again, I need to wear my CTO. I'm ashamed to say that I did not wear it because I can't handle a walking stick AND dog leashes, and with a CTO, I absolutely need a walking stick to feel my way so I don't take a tumble. This is just a deer trail with lots of limbs to step over, rocks in the trail, etc. I know falling would be disastrous for me. But, I need to be firm with myself about this: CTO if I go for walks! Even if it means I don't get the little endorphins from working with the dogs and being a trainer again.

God's Grace. The Bible tells us that the Lord gives us all the grace necessary in our time of need. We are told "His Grace is sufficient for us." And I believe this is true. I got to see it first-hand the other day...

I was talking to my Mom on the phone. And explaining to her again about how I have to be careful to control my emotions, to not allow myself to get "riled up," or too excited, or too happy, any sort of "high" emotion, because when I do, as I've written here before, I get very distinct symptoms including a jump in blood pressure which causes a flushed feeling all over my head, a painful "pilo-erection" of my scalp-hair follicles, sweating above the C1 level and over all painful weakness.

She commented, "How sad that you cannot allow yourself to feel exuberant joy!" and I truthfully replie, "Oh, that's okay, Mom. By this time, I've come to accept this as just the way things are. I have learned to deal with it as best I can."

I had my last phone interview with one of my work comp medical examiners, and this time it was the neuropsychologist. He asked, "Are you depressed? Do you feel sad when you think about your situation?"

And I honestly answered, "Is there a difference between emotionalism and depression? Because I do not feel depressed. I am very happy with my home and my life and my wonderful life partner/husband and the woods and scenery that surrounds us. I feel my blessings are abundant! But I do get emotional and even cry when I think about certain things, like my horse I left in California because I am too weak and sick to ride or care for him."

The doc said that he did feel there is a difference between depression and emotionalism. Maybe he was just being kind.

But I feel that this is all a sign, to me, of God's Grace at work. He has given me the Grace to accept things as they are, He has given me the strength to not be burdened with self-pity. If I can handle some of this with a smile, then it's all due to Him.

Every day that I am able to venture out of the yard to town, and I am wearing the CTO vest (which is every time I leave the yard), I must reply to various comments from the friendly folks in our town. Today, I heard from a passerby, "That musta hurt!"

I just smiled and said, "It was a long time ago."

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