Muscles and Bones

Last night I started taking my muscle relaxers again.  My shoulders and lower back of my neck muscles have been really tight lately, making my neck pop every time I lean my chin down toward my chest.  It totally and completely grosses me out to feel it pop, with all the disgusting little cartilage noises and feelings, and freaks me out too, wondering if something is wrong with my fusion or if something could potentially go wrong with it.  

In the process of trying to feel those muscles there, I became aware that there is a place at the top of my fusion scar, right at the bottom of my neck, almost between my shoulder blades, where you can feel either the bones of my spine or the metal hardware through my skin, there's not enough muscle layer covering it up, and this so completely revolted me when I felt it that I almost became sick.  I don't know if the muscle will eventually build back up over it, or if it will keep building on each side as it seems to have been doing so far and still leave this little valley in the center where you can feel that alien, bony hardness under the skin.  

All I know is in those few seconds, I really wished this would all go away and I could just be normal again.  And then I reached for that bottle of muscle relaxers, hoping desperately that if I could just release those muscles enough, the eerie popping and grinding would stop.  I have a CT scan and consult with my neurosurgeon tomorrow, and I will definitely ask him about it then.

Hot Mama

Temperature is serious business when you have a spinal cord injury.  I like to joke about it, haha, I don't sweat anymore, but in reality it can be very serious and it doesn't take extreme temperatures to make a problem.  

Here's an example:

Our electricity went out the other day, in the hottest part of the late afternoon/early evening.  It was 102F outside, but with air conditioning we'd kept the inside of the house in the low 70s.  The power was out for less than two hours, and during that time the internal house temperature crept up to around 77F.  When the power came back on, it took the thermostat another three hours or so to cool the house back down to around 74F.  Not too bad, really.  But for me, it almost was; during the time the a/c was out and the period needed to cool the house back down, my internal temperature went from my normal 96.5F to 99.5, and we had to use cold wash cloths on my skin to help cool me back down.  

If a couple of hours in temps in the high 70s can do that to me, imagine what could happen outside in the real heat, or on 30 minute car rides where it takes 15 minutes to get the vehicle cooled down, or in crowded buildings where the a/c can't keep up with the quantity of people coming and going.  My body's natural responses to temperature change don't work; I not only don't sweat appropriately, my blood vessels don't dilate to allow my body to cool off.  The temperature signals either aren't reaching my brain, or the responses from my brain aren't reaching the rest of my body.  It's something I have to constantly be watchful for, and the same will be true when it turns colder, and the risk of hypothermia replaces the risk of heat stroke.  I found that out in the cool of early spring, when I realized that my brain, being accustomed to not getting the right sensation signals from my feet and lower legs, essentially ignored them as I got colder while sitting outside, so they got less and less blood circulation and became deeply chilled and sluggish.  They would take hours to warm back up after I came inside, so I learned to be careful to keep them warm when I was out and not to stay out too long.  The last thing I need to add to my problems is frostbitten toes!

Supper Sitting Up

Tonight I decided that, thanks to that stomach flu, I'd been spending quite entirely too much time in my bed lately, and that I would eat my dinner sitting up in a chair instead of sitting up in bed.  This might seem like a "duh" sort of moment to most people, but most people don't experience the kind of pain I usually have when I'm sitting up in a chair.  Several days of only getting up for potty trips were making my tailbone cranky, though, so a foray to a dining room chair was in order.  

I sat up for the duration of my meal, and as long as I could tolerate it afterward, and for a pleasant change, it wasn't pain that drove me back to bed, it was being too chilly and needing to get under my blankets!  So this was a victory for pain-free eating, and I hope, a sign of more meals that I'll be able to enjoy sitting up like a normal person.  Plus I got to half-way dance with my husband while I shuffled around from the chair to the bed, holding onto him instead of using my walker.  And of course, showing off a few more of my new hands-free stand-ups.  :)

Acceptance

At some point on this journey, apparently, I have accepted certain realities about my illness.  I realized it today when I had two particular thoughts (I know, two thoughts! In one day even! My brain is on overdrive...): 

1) I wish I didn't still need so much help; and 

2) Wow, I used to wish none of this had happened to me.  

Somewhere along the line, without my realizing it, there has been a subtle shift, so that wishing I never had cancer or never injured my spinal cord now feels about as useless and silly as wishing a cup of water didn't get spilled yesterday or wishing it would rain.  There's nothing you can do about the past and things you can't control.  My wishes and hopes now reflect things that maybe I can change, and actively pursue, like becoming more independent so that other people's lives don't have to be restructured around me and my needs.  Finding a ranch-style house, and a way to afford it, so that my family and I can live on the same floor, with a bigger kitchen so I can get in and out of it with a walker and/or chair and be able to make some simple meals again.  So that my husband and I can share the same bedroom, without having to make elaborate plans for energy conservation and trips up and down stairs being part of the equation.

Lest you think I've completely abandoned unreasonableness, though, I must admit to spending much of the past three days fervently wishing I didn't have the stomach flu, despite knowing that wishing wouldn't change it.