PUT IT ON THE BACK BURNER
People ask me how I deal with this phenomenon called Superior Vena Cava Syndrome (SVC). Some days I don't. Most days I just put it on the back burner of my life. Sometimes it is so on the back burner that I forget to tend to it and I get myself into trouble.
I'm not supposed to do anything that might scratch my arms because they are so swollen and the risk of infection is high. I get out into the garden (sitting and sometimes lying on it to work) and get scratched without realizing it until I come in to clean up. It just doesn't occur to me that I might have done something dangerous. Other times I forget to not bend over very long and I come close to passing out. We live on a steep hillside, so passing out is not a good idea.
The thing I think I will never quite get used to is the constant sense of pressure in my chest and neck and the pain that it creates. Sometimes I make myself forget about the pain and to think of it as the way everybody feels, but it is always there.
What I think about this illness that is like so many others is that we GET to continue to live despite the illness. I try to never lose track of that glorious fact that I am alive today.

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