The sliding scale of "Normal"

I am beginning to realize that "normal" is going to have to take on a new meaning for me. I thought I had come to this conclusion before, but after reading the information that I have seen so far about PVNS, I can't set my expectations too high. I think I really have to start accepting that my normal, regarding living with pain, will be quite different than what most people would expect for themselves.

Believe it or not, even though the occurrences of PVNS are only 2 in a million, there is a *support group* for it! I stumbled on it while doing searches and some research into this disease. So funny. Yeah, I joined. Why not. From what I can tell so far, there are about 20 people on the list (based in America), and nobody has it in the hip. Almost everyone has it in the knees (most common), and there is one guy with it in his ankle. The alarming part is that what I have read so far is that it seems like everyone has had multiple surgeries. The tumor keeps returning, sometimes more aggressively than it was originally. There are stories of getting radiation therapy along with surgery. I also read a study of treating PVNS with radiation after surgery, and the conclusion was actually quite positive. You can take a look at it here if you are interested. I'll have to raise that with Bikels when he calls me back. He is now on vacation for a week. ...wish *I* was....

So, normal for me might be that my hip probably will never be as good as new. I am trying to look at it this way, and if it turns out that I am wrong, and it will be like new, than bully for me. But I feel that if I set my expectations lower, then I will be able to deal better.

I still know deep down that I will find my work that I have to do on myself to heal. I thought I had found it after the NF. I really thought that I understood myself and what I was supposed to learn, and improve, from that. No physical thing is without it's emotional component. Body & soul work together.

I have to deal with pain and problems in my hip, maybe for life. But maybe I am supposed to value life more, so the pain problems aren't insurmountable. Maybe I can love better. I think that is what Gd wants from all of us.

I don't know... just shooting from the hip here.... [sorry ;-)]