Tuesday, July 17, 2007

Balancing on the Edge

July 17, 2007
I am a little over two weeks post major thoracic surgery to enable me to eat soft foods and maybe even a more normal diet. The surgery was far more extensive and difficult than the doctor and thus my husband and I ever expected. The first few days were filled with unrelenting pain and discomfort - wishing to be somewhere else; not knowing how to get what I needed to reduce my pain or find comfort. I was dealing with medical technology that I'd never experienced - chest tubes and central lines. I went home eight days after surgery, still in a considerable amount of pain. Finally able to deal with my acquired knowledge of pain management from the past three and a half years of living with severe migraines and working with a pain management doctor, my husband and I figured out the dosage that finally brought my pain under control.

Living on the edge - the edge of pain; the edge of wondering if I can physically make it through the days that lie ahead; wondering if it will get worse before it gets better. The edge - not being able to cry because it hurts way too much. Not wanting to feel the depth of my fear because I might not be able to handle how far down it could take me. And even if I felt the depth, what good would it do me? What were my options? I had to go through the awful first five days after two successive days of surgery. Infection set in my blood system - I did not cause it nor could I cure it. I could only hope and pray that the round the clock - three high-powered antibiotics they were pouring into my central lines would nip the infection early on. I could not imagine dealing with any more pain than was already with me.

The hospital is a lonely place. My husband is a dear man. He loves me more than I deserve. We own our own business so we are blessed with a lot of freedom in his ability to be with me. Yet the reality of our hospitals being an hour and a half away from home (because we chose to work with the best specialists in our area) it is still difficult for him to be with me when I am in the hospital and keep the business running. He is there every day. But what do you do when he's with you? You want him to take care of you - to be kind and tender and make you feel better. But there really is only so much he can do. He can do everything within his power to make things better but he can't take away the pain, or the fear. No one can. It is what you are left with to deal with on your own.

That edge - do I collapse into myself and push the outside world away from me. Or, do I reach out to God and in the midst of my despair find God and ask Him to be with me in the midst of this. He can't fix these things for me. He can't take away my fear or pain. He can be here with me - is that enough. Is it better to have Him with me than to be alone? How is He with me? How do I feel Him with me? There was a meditative station on the TV - music, photos and some words. It was simple. But it really brought me into the hands of God. I could feel Him. Did I physically feel better - was the pain gone? No. I guess I just felt calmer - like maybe I could make it through the next fifteen minutes and that His presence was there with me. That one five minute meditation on the TV led to another 55 minutes which completely changed my experience of the morning. I didn't feel so on the edge.

It wasn't an automatic cure. The pain was still there - not quite so loud. The fear came back. I felt like I was back on the edge - I wanted my husband to hurry up and arrive - the discomfort still bugged me. But there was also bits of peace and calm coming and going.

That same on the edgeness has been with me today. I'm at home recovering. At times the pain gets so intense. But rather than give in to it - which sorta happened last night - and it did take over big time; I'm trying to acknowledge that it's happening but trying to find a way to deal with it without going over the edge. So I got up and moved around slowly. Even went for a short walk. I didn't necessarily want to do it, but I knew it was probably the best thing to do. And it did help, for a while.

For today I'm learning that with the pain I have from surgery, there is nothing I can do to make it go away completely. Pain meds are temporary; meditation, walking, heat - all these things are temporary. They take my mind off the immediate pain and allow me to shift sometimes for 10 minutes, sometimes for 30 and then I have to do it again. It's a lot of work to deal with pain. It takes conscious work - choice - will above immediate desire. Standing and balancing on the edge of giving in to weakness, crying, hurt doesn't help. The edge is only good for reminding me that on the other side of that edge is the choice to do things that are more likely to help me and that I have that choice each and every time I reach my limit of dealing with my limits of pain. I don't do it perfectly. I often have to step and slip before I can pick myself up to choose to do what helps me. It's an hour by hour thing - trite as that sounds it's true. And, if by chance, I'm lucky, I may even end up smiliing - like I am right now. Smiling because in writing this maybe, just maybe, someone else will get what I'm experiencing and I won't feel quite so all alone in this little part of the story of my lupus journey.

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