Thursday, June 14, 2012

about nerves. and drugs. and surgery.

Man what a week it's been. Pain, a day of respite (which I wrote about in "Crisis ended"), Then.More.Pain. I *didn't write about that. I was too consumed to write any cohesive thoughts. It's nerve pain, and it's bad.Can you **believe** this?!

Now? Back to the regular higher dose with the patches. Going down by 30% from the Fentanyl patch, it turns out, is not a good thing for me. I called Dr. Z while I was in *hard* nerve pain, and he said, without hesitation, to return to the higher dose... immediately. So, I did. Problem is the nerve pain hasn't resolved. Something happened; the delicate balance-- the cocktail of substances-- was thrown off.

Long and short of it?
I have some strange, very unwelcome pain going on. The bottom of my thigh feels like it's been punched in a few places. It bleats loudly with round, fist-size pain, in a few places in the thigh. There is also a feeling like a tight belt tugging all around my thigh.

The area of my mesh, where the surgeon told me he had to screw the anchor in tight, is freshly painful again. I feel everything going on there under the graft. Earlier, before I went down by the 30%, that nerve pain was covered by the Lyrica and Fentanyl combo. Now, something got thrown off course.

I need new nerve medicine. I have spoken with Dr. Z about it. He said that he has some ideas, but we have to get the Fentanyl dose balanced first.

Or should I just get the reconstruction job done and close it all up? Hmph... just... as if it is a quick decision. It is, however, a decision I have been writing about for many years. It is the "end of the road" for me as far as planned surgeries having anything to do with the NF. Sounds good when I put it that way, right? Even Dr Szold, who did my mesh surgery so successfully, said that it is one step closer to reconstruction. You may also remember (or may not) that he used a type of mesh that would be easier tolerated with the skin the way it would be after reconstruction. That was because I originally told him that I am coming to him to do the mesh as the step necessary before reconstruction. The mesh surgery was part of a bigger plan, not an end in and of itself.

That reconstruction, as I've been told by more than one trustworthy doctor, will solve the nerve pain. Now, for whatever reason, the nerve pain is present all the time.

But reconstruction is two complicated surgeries.
I am gun-shy. I am reluctant to volunteer for more surgery. I am going away from it, out of tiredness and an aversion to ...the whole thing... again. I would need to again rely on people to help out in a very big way. I don't want to need that again.

The end of the road for the NF damage.
Sounds like someone offering a child a lollipop.
Just that I am not a child, and that ain't no lollipop.

Getting off pain meds, though, is an idea that feels awesome.
Maybe I should go with that?

(to my generous, loving, humble help-staff... food, laundry, childcare... can we do this again? Am I nuts? Well, it's actually the NF and the illnesses that are nuts, though, you know?
Is there a possibility of being in this together again?)


  1. I want SO MUCH for you not to be in pain, (or if that is too much to ask then for the pain to be relatively mild.)We're here to help you in every way with whatever decision you make vis a vis surgical procedures.

  2. It's your life, create it the way you want it to be. You know that the people who love you will support you in whatever decision you make.

    1. I agree completely ♥♥♥

  3. before I scroll down to read your blog, I am always stopping to look at those sweet sweet smiles of your children. your decision should be the right one and I am sure that all your friends and neighbors will help out in your time of need. rochel.

  4. Yes we can!!
    Love, Miriam

  5. Me too! and will pray that you have the wisdom to make the best decision for yourself.

  6. Dear Sarah, may Hashem help you make the right decision. We all want to share the happiness of you enjoying life without pain BE"H.

  7. Sare, XXXOOO. May Hashem grant you clarity very soon on this issue. We send lots o'love.

    Dev from NJ, USA