Jaws

So....

The nerve damage moved into my jaws on Monday, January 18, 2016.

It has now taken up residence in both legs and feet including knees and toes, both arms and hands including fingers, part way up my back on either side of my spine, the back of my neck, and both my jaws. At least both sides of my body are synchronized in their malady.

I can still chew and swallow. My back teeth don't touch when I chew; the strength isn't there to fully clamp down. My jaws feel weak. Chewing feels...clumsy. So, I take smaller bites and chew longer. (That means more take-home when we eat out.) I had already employed those tactics in the fall of 2014 due to heart burn and to what felt like my esophagus becoming more narrow.

The pain isn't bad; it's a strain-type pain similar to a long dental visit when I've had to keep my mouth open a long time and the after-pain of getting dental injections in the inside back jaw areas. The pain is similar to the pain in my neck now, and in my back. There is no shooting pain like used to happen as this unwelcome guest has invaded more corridors in my body.

Upon opening my eyes that Monday morning, and proceeding to yawn, my jaws didn't comply fully. They stopped short, with pain and inability to fully stretch. I don't recall my first thought, but it was probably "fuck" or "shit," with the tone of "I'm fucked now." Like I wasn't already.

I massaged my jaws as I lay on my back staring at the ceiling. Okay Carol. It might just be you slept wrong. Maybe you ground your teeth more than usual. Don't jump to the conclusion that it's nerve damage spreading again.

But it was post-week 5 since my last epidural. That's when the damage typically spreads. Then and sometime between post-weeks 8 to 10.

It always spreads while I'm asleep. I awake and a section of my body lets me know almost immediately that the antagonist has taken more space. I don't really like calling the nerve damage an enemy or antagonist. Because it is so much a part of my life and my body. I can't view my body as an enemy and I know factually it is not the enemy. I just can't dwell on the enemy aspect because then I'd constantly be in fight mode with my own self. That is not helpful to me. I could write a few blog posts on that subject, how I come up with analogies and how I flip the situation to see something, anything, in a more positive light.

I told only Hubby on Monday. I knew I was fooling myself to come up with other reasons for my jaw impediment. But I wasn't going to accept more damage, yet. I was quite depressed, and fearful. If my jaws were still lameish on Tuesday morning, I'd be 99% sure that was the problem.

Tuesday morning after I hobbled to the kitchen with my crippled body and stood at the sink leaning my hip area against the counter for support sipping water from a straw in a cup held by my crippled hands, my mind reeled with fear, bordering on terror. Is it ever going to quit spreading?!? Where will it spread to next? What if it is ALS? Stop it Carol. Stop it. You've got to keep it together.

I paused. More tears. Deep breaths. No you don't. You don't have to keep it together. You need to grieve the loss. Grieve. Grieve. Grieve. 

And I wailed loudly for a good hour. As is often the case, the walls were my only witnesses. There were no humans or pets around. I wasn't outside, so no trees. But I gazed at the trees out the kitchen window, as my heart again pleaded for healing. I've grown very fond of trees.

After my wailing session, I began that thing that I'm becoming better and better at in regard to this unwelcome guest. I entered acceptance mode. Not defeat. But acceptance, which opens my thinking to possible solutions and how to cope.

I reluctantly let a few folks know over the next couple days and gathered some moral support. I get tired of this news; I know others do too. It's wearing, to say the least.

I saw my neurologist a week later on Monday, 1/25/16. I got about 15 shots in my neck and across my back directly under my neck. We moved my next epidural from 3/07/16 to 2/24/16.

There are positives in 'all this' (besides more take-home food), including that the hemp oil is still working. I found out just how much after going off of it and resensitizing my endocannabanoid system. 'All this' includes other things that have happened the past 6 weeks since my 50% reduction in my epidural. But those are subjects for possibly another time. Quite a bit has happened, and I have my notes.

I'm grateful for friends and family and my medical team.

Ha. I'm on a team! I guess I'm the captain.

Which brings to mind Grand Funk Railroad's "Closer to Home." Another significant song for me...




The word 'home' brings to mind my science fiction hero, Mark Watney, and my adaptation of some of his lines which I have taped on my refrigerator for this 12-week (now 10-week) round...

At some point everything is going to go south on you.
Everything.
And you'll say, "This is it. This is how I end."
Now you can either accept that, or you can get to work.
That's all it is.
You just...begin.
You solve one problem and you solve the next one, and then the next.
And if you solve enough problems, you get to come home.
And if you don't make it home? You had a helluva ride trying.