Eight days. And today is a beautiful day. On days like this I have been wondering,if I were teaching right now, what excuse would I have used to get my classes outside...
I have time for "recess" this morning so I am drinking coffee with my laptop out on the patio - while the kids from the daycare play on the other side of the yard. I took a chance coming down to the Tim Hortons; now that I am self-propelled I can't carry a coffee and move my chair at the same time. When I got downstairs I happened to run into Jean, my social worker, who graciously agreed to help carry my coffee outside for me. So know I have to consider whether or not to put my hat on, the plastic surgeon doc suggested I not let my scars get any sunlight - but it feels so good on my face.
So aside from a bit of pain in my back, I am feeling well today. I am hoping that the pain in my back (it's kind of new) is caused by the back rest of the chair that I am trialing right now. It is too high; it comes to the bottom of my shoulder blades. This afternoon I am supposed to be meeting with Cliff from Motion to hopefully try a different backrest. Right now I have the TiLite ZRA, which is supposed to be the best titanium chair out there. Being told to choose a wheelchair is like being give a bunch a of money and told you have three days to go and buy a car - except you have never even ridden in a car before, let alone know have to drive one. Not easy.
Doctors and spinal cord patients talk about "level of injury". My level of injury is T4. What happens for me and most other patients is like a really tight rope tied around my chest. That rope is right below my breasts, exactly on the line where my bra sits (T4). It is also in the same spot where my chest tubes were inserted during my stint at Victoria. I have never really had a good explanation about what causes the pain (that tight rope) but I imagine that all the nerves at that level just get cut off, so they kind of go haywire, sending out impulses all the time, but with no purpose. This is what they refer to as nerve pain.
So throughout most of the day I am distracted enough to be able to ignore the pain, pretend it is just the annoying elastic of my bra, but at the end of the day when the clothes come off it is there. Like a fire burning around my chest. Lately, in the past couple of weeks, and not every night, that fire seems to be entering my lungs. So I finally said something about it to my nurse a couple of nights ago. She checked my vitals, all good. She listened to my lungs, all clear, no crackles. She offered me a couple of tylenol, which I took, but it didn't really change. I went to bed and felt better in the morning. But later in the day that feeling came back. It is so hard to describe. It's not heartburn, it's not fluid in my lungs that I need to cough up. It feels like the rope is tighter, like there is pressure in my chest that gets worse with a deeper breath. Pressure increasing as the day goes on.
So when I told Lisa about it yesterday and she suggested it was anxiety, I was quiet doubtful. That is not the type of person that I am. But then I saw Stephanie who said the same thing - and explained why anxiety was a very plausible explanation. Then when I saw Kristen and she listened to my lungs and felt how well my chest expands for breath - she agreed. I started to believe, and to talk about it. Anxiety makes sense. Not that I am having a panic attack, but I have a major change coming up in eight days. There are very few things that I am able to plan for or have control over for this change - and that is not something I am used to. I am a teacher, I plan for a living. So this is going to be hard for me, not being able to be in control. But what I can control is how tight I let that rope get. Talking about it helps, so hopefully it won't get too tight today.