Burn, Baby, Burn

BCE and I went to Coffee Bean & Tea Leaf by the beach. It was a beautiful day, so we sat outside. I was bundled up in a warm sweater, t-shirt, gloves, jeans, 2 pairs of socks and a blanket on my lap.

It was also taken yesterday…75 degrees where we were at.

A couple of nights before, I woke up out of a dead sleep, about 4am, screaming in pain. It felt simultaneously like my arms and legs, shoulders to fingers, hips to toes, were on fire. A combination of pins and needles and cold numbness. Think, very cold feet and stepping into very hot water. I couldn’t feel or think about anything other than curling into a ball tight enough for the pain to stop.

It didn’t stop for 2 hours.

I had a prescription for gabapentin, but I had only taken it for hot flashes. It took about an hour for it to occur to me that it also worked for nerve pain. I had also forgotten that I had pain pills that could have helped with the pain. I had never felt anything that intense. Every so often, I had felt a bit of aching in my hands after knitting too much, or a shooting pain down my left side when the catheter that runs through my body would occasionally float out of the anchor in my spine. But this pain was an entirely different animal.

I’d heard of the word neuropathy, but I didn’t think the nerve pain I felt could be that intense, that long after intrathecal chemo. Oh man, was I wrong!

I’ve been using a cane for a couple of years for stability, and I had a walker for the occasional days with weakness and a wheelchair to use if I would be doing a lot of walking. I had relied on those off and on, but since that morning, a mere 4 days ago, I haven’t been able to move, stand, walk, or even roll over in bed without help due to the severe pain. The walker poses a new set of problems, aside from standing and staying upright. After just a few moments, my hands and feet start to throb with pain from the pressure of holding onto the grips and walking. Getting around the house doesn’t happen without Bee or BCE walking behind me and supporting me by my waist, essentially carrying me from this place to that. Gloves, compression sleeves, 2 pairs of sock, and using almost constant heat help with the pain. Mostly, I have stayed in the recliner, working nd trying to mask how much this sucks. My doctor offered to increase my already very strong pain medication even further. I refused. I need to fix the problem, or at least learn how to deal with it, not just put a band-aid on it.

I spent most of the afternoon crying out of mental, physical, and emotional pain. I’m frustrated and really overwhelmed. I can’t imagine that this is the rest of my life…

…and I refuse to let it be. Get busy living or get busy dying.