First, I'm excited because a reader left a comment and she also has suffered a Jefferson Fracture! I need to learn more about her, but I wonder if she has felt as alone as I have. I wonder if she thought she'd never meet another person who has gone through what she has.
Can't wait to get to know her better. Once of the reasons I titled my blog what I did was in hopes of drawing in others who have suffered with a JF. Of course, I'm not happy anyone else is dealing with this, but if they are, I hope I can help!
Swimming Up Pain's River. Well...
Lately (you've probably figured out) my symptoms are amping up. I didn't blog here for a few days because I just haven't been feeling very inspired. This is not to say that I don't have good moments in each day, because I do.
One of my problems is my memory. And I know we all can relate to that one, right? However, I forget some important things that I have stated and written over and over, I've studied it and I should be able to remember it...but pleasures override knowledge and such "files" get pushed to the back of the drawer to where they are not even present on the desk of my recall!
I'll come back to this in a moment.
Yesterday, my husband and I stained and watersealed (one great product) most of our front wheelchair ramp and railings. I sat on a green, PVC lawn chair with my bucket of product on a stool beside me so I wouldn't have to stoop down to dip in my brush, and lathered the stuff onto each railing. I thought I was being wise. I didn't feel any pain at all and thought I had "beat the system."
We took a long break for our wonderful lattes, then I went back out and taped my brush onto the end of a broom handle. There was just a bit of sealer left, so I poured it into the bucket and with the brush on the long pole, I sloshed it onto the floor of the ramp. Didn't get it all done before I ran out of stuff, but was so pleased with how well my improvised brush worked.
I came inside and was hit with the familiar and overwhelming sense that my neck could not hold my head up. I laid down on the guest bed with my dog, Quincy, and felt such pain in my brain.
By this, I do not mean a headache. It hurts in my frontal lobes very much and clouds my thinking, but not in a dumb-dumb way. Just painful to have a thought. I didn't want to fall asleep because I knew this horrid, swimmy feeling would be enhanced further by sleep.
I slept fitfully for 2 hours, dreaming of pain, waking up and thinking, "Oh, when I drag myself upright, it's going to hurt so badly and it will take an hour to feel back on this planet. I don't want to get up!" so I'd fall back to that dreaded sleep. Finally, I did force myself up and it was a struggle. I've been through this many times, I know the procedure. I also get this feeling when I wear the CTO vest in the truck.
So, what has memory got to do with this? I forgot to wear my Aspen Collar. And I forgot that Dr. B pointed to my odontoid and said that some of my issues come from that bone poking slightly into my brainstem. I just forgot it. I kept thinking to myself, "I wonder why I get this horrid
reaction to doing things. Must be the brain injury." Only many hours later did the proverbial light go on and I had an a-ha moment.
I posted about this symptom/experience on the ChiariConnectionInternational message board, just to see if anyone else there with craniocervical instability experiences this. No one has responded that they have. I am the only one there with CCI from trauma. Or at least the type of trauma I have had, the JF.
Burning pelvis woke me from my sleep early this morning, at 3:15. I got up and took a Norco at about 4 am, when I finally accepted that the pain was not going away on its own. That worked wonderfully, and I got up this morning feeling "like aces!" and have stayed that way til about an hour ago. I went 10 hours without a pain pill. Felt pretty good about that.
Just another day in Paradise, as they say. The breezes outside are tossing about rusty leaves at will. Looks like an opportune time to step outside and breathe deeply. Oh, the sun just broke through the clouds. I'm there!