Hi. I'm back.

"...I felt that the trip [blog] had ended itself; had reached some psychological conclusion, had simply become complete, like the last page of a novel." (from the book "Tracks" by Robyn Davidson)

I stopped writing because life was much more simple after I healed from my big New York surgery. I was working at the gold/silver smithing job, and I wasn't in pain. I wasn't in pain after that very successful surgery. It was quite literally a miracle in my eyes. I didn't need the blog anymore to get out the hard stuff that plagued me for so many years after I had NF. Life had become better by a lot.

Fast forward to about six months ago.... yes, we are skipping lots of time in the life of Sarah and family, but that's OK. You understand. Life went on pretty smoothly. My kids are doing great, all of them, my grand daughter is now a year and a half old, my husband Robert is in a good space, and we are truly blessed.

But pain has re-entered my life sphere. My body, to be exact.

It's about three years since my life-changing surgery, and pain has slowly been creeping back into my life. It's been downright depressing and difficult again. I can still do my work-out at the gym (where I try to go three times a week), but some things are more painful.

I had thought my left hip was going, as my right one had done two years ago when I had it replaced. But it's not joint pain. It's nerve pain, or scar pain right at the top of the hip bone, where the painful part of the skin graft always was. I went to my orthopedic-oncologist about a month ago, and he diagnosed me with bursitis and advanced arthritis. He prescribed three months of rigorous physical therapy, then to come back to him to re-evaluate the situation. So I am now in physical therapy with two different physical therapists, both young, both had not heard of Necrotizing Fasciitis or PVNS. They both have different ideas of what might be wrong. But I'll do what both of them say as long as it doesn't contradict one another.

But I don't think physical therapy will solve this problem. I think a few things:

1. that I have adhesions from the big abdominal surgery which went to the hip

2. that the remainder of the mesh is what is causing part of the the pain again

3. that the hip bone pain might be referred pain from my belly where lots of things were moved around and cut and sewn up again.

I am going to ask my GP for a CT scan of the area and send it to my surgeon in New York. I might even go see him this summer if we decide that is what is needed. I think he is going to want an MRI, and I'll have to jump through hoops here, again, to use a referral from him to get an MRI here in Israel.

That's the plan... physical therapy for the time being, and diagnostic testing.

I feel like I've been around this block too many times. It's downright depressing. So far I've managed to keep my spirits up because a lot of good is happening in our lives, but pain really puts a damper on life.

Once again NF is the gift that keeps on giving. I think it will never come to a real end, that pain is always right around the corner, if not this year then next, or the next. I write to people on my NF support group, when they talk about their issues and pain, that I'm not going to lie, pain and troubles follow us after we've had this disease. But I always write to them with an upbeat tone, that it gets better as time goes on. I'm one of the people who have been the longest- term survivors, so I often try to write words of wisdom. Sometimes all I can do is commiserate, and that has it's therapeutic place, too.

I have totally given up horn playing. Forever? Who knows. There are many reasons for it. I'm just too much of a perfectionist when I pick up my horn, its not emotionally feasible. I still fanaticize about my 13 years in the orchestra.

I am trying to restart my doula practice. It's going slowly, but that's OK, because...pain.

I am still doing the silver/gold smithing job, and I usually really like it. It gives me a good framework to get up every morning and go to work.

So, life is complicated again, and I feel depressed about the pain, but lots of things are really good. 

Lots of things. 

Baruch Hashem.