Sunday, June 17, 2012

Getting up the nerve

Thursday in Jerusalem was awesome. I met this woman who I mentioned in the last blog entry- the "medical coach". Her name is Shulamit. I went to her house, which is a pretty place with vaulted ceilings right in the middle (practically) of the Jerusalem open market, known in Hebrew as "the shuk".

Going to her place, walking through the shuk, I knew I couldn't stop because I needed to be on time for the meeting. Coming back, however, was another story... but more on that later.

The meeting was *so interesting*. Shulamit works with all sorts of methods to help people live their lives without trauma, in order to go on with the regular business of life. Quite a concept! I came to her saying that I have been 'stuck' with all my medical "stuff", not able to go forward with my book, or with any other plan I wistfully dream of.  So, our first meeting together was on Skype. I took time to tell her about some of the traumas I have been through, and she introduced a technique to me for releasing trauma. The technique didn't really speak to me, but I'm for sure not ruling it out. So our next meeting was this past Thursday, and we met face-to-face. She taught me another trauma-releasing technique, and she guided me through it, using one of the traumas from when I was in the hospital for NF. I chose the one that happened when the surgeon opened up the fresh bandage from the donor leg. It is (was) a *big one*.

I left her place feeling *lighter*. It was a wonderful feeling. When I thought about that story (the bandage story), it no longer felt heavy, or scary. It has become just another story I have to tell, without all the trauma surrounding it. Each time I have thought about it in the days since, it has been like a neon sign which was turned off. The shapes and letters still exist, but the electricity is missing. Quite a burden we lifted off Sarah that day! I look forward to doing this work with *more* traumas! (said tongue-and-cheek style, for those of you who don't know me so well yet. :)

Then I went to play in the Jerusalem shuk on my way back. I felt so great!
I bought some wonderful cherries, and some other scrumptious treats, and the long-and-short-of-it is that I spent toooooo much time on my feet. Perhaps if I had more discipline (but I so *love* Jerusalem!) I would've been better off.

To make matters worse, I didn't listen to my body on Friday, either. I felt bad that I took so much time in Jerusalem, making Robert work harder because of it. (note to self-- no unplanned-time away from family!) I knew I had pain and needed to rest, but I also didn't want to leave all the cleaning/preparing/childcare to Robert. It feels awful on two levels-- one level is that I had already been away all Thursday, and the other is that I need the house clean, and there is only so long one can say "well, the clean house doesn't matter, just take care of yourself". It *does* matter to me that house gets cleaned, and sheets changed. Our house cleaner has a sick mom who she has to take care of for a while, so she hasn't been able to come. That was a hard blow for me, I had finally felt that we had the most perfect one for us. So, that means, until further notice, the cleaning is up to the whole Klein family to do. I don't do any of the heavy lifting or mopping, but believe me, there is plenty of cleaning to do aside from the heavy lifting and mopping! So, that falls in between the cracks, and I find myself doing a lot of it.

My nanny has just offered to help change children's sheets when she is here, so that will help. As far as other stuff, well, we have to find another wonderful house cleaner. I have put out feelers. Until that happens, I have to try to be more organized about cleaning so it doesn't all fall on Friday.

It won't come as such a shock when I say I had SO. MUCH. PAIN. by the time Friday night came around. It was actually unbelievable how much pain I was in. The nerves all around my leg were just going crazy. I had to take Percocet on Friday night- together with my high dose of Fentanyl-- to get some relief.

We are wondering what happened between the time I tried to reduce the Fentanyl (when the nerve pain started to be much stronger), then increased it back to the normal dose. It seems the nerves didn't return back to the way they had been before we reduced it (mind you, that as it was, was hardly nerve-pain-free!). They got all jangled and angry, and didn't get better when we gave them more medicine again. I think that nobody really understands much about nerve behavior.

When I finally crawled into bed on Friday night, it was... yeah... pretty darn bad. It was nerve pain plus Gapey/mesh pain. I did a little experiment, though. I decided to try to figure out if the nerve pain is at all connected with gapey. To figure this out, I just pushed around on the different parts; center, sides, corners, all around gapey's little world. There were a few times that when I pushed, it was like an electric 'zap' to another part of my leg-- even far down the thigh, near the knee. This is very interesting, right? There was a **direct** correlation from gapey to nerve pain in my thigh. It was like a little switchboard (with no "unplug" feature). Needless to say, there was also direct correlation with pressing on gapey to the pain that I have from the mesh which is under it.

Conclusion: To go ahead and do the reconstruction surgery.
(I wrote that small because it is big and scary, so I am making it smaller.)

There was a doctor three-and-a-half-years ago who Robert & I liked very much in the ortho-oncology dept at Ichilov (where Prof. Meller is the head). When he examined me, he said to me a sentence which has stayed in my ears the whole time: "Your pain won't go away until you get this [referring to gapey] closed up."

I want now for the next plan of action to be to decide who will do the surgery. I have two options (on my radar): one is here in Be'er Sheva- the head of plastic surgery in Soroka. I have had consults with him before- he knows lots about my case. I saw him a while ago before the mesh surgery. The second one is also wonderful- he's in Ichilov. I've had a few consults with him, too. He also knows my case.

I may just go with the one here. It is a few surgical procedures over a month's time, and there are a lot of visits in that month. Then there are all the follow-ups, etc. For this, I think I should be closer to home. Oh, *and*, this doctor comes with a recommendation from Rav Firer. Not to be underestimated!

Really, I'm going to do this?


  1. I'm glad to hear you are making progress with your medical coach; that is going to help a lot. And a decision! You go for it. With your positive attitude, you will come through this surgery with a minimum of difficulty. Continue visualizing the results you want. Your friends are here for you.

    1. Thank you!
      I really do think the decision is from a combination of me figuring out that there is a direct correlation bewtween gapey and my nerve pain, (even pain that is far from gapey), and realizing that with the coach, and release of trauma, I'm gonna get through this with my "eyes on the prize". :)
      I just wasn't ready before. I have talked about it for the whole five years; that doctors recommend I do it, that I know it would help but I just can't bring myself to mess around with gapey. Now, for these reasons I've been talking about, I am ready. I AM READY!
      Oh, and Robert has been on board the whole time-- all of the years, supporting that I do it whenever I mentioned it.
      It seemed that each time I was considering doing it (but not feeling ready), something came up. Right at the beginning the plastic surgeon (who I plan to go with for the surgery) said that the graft is ready for me to do it, let's do it.... but then I got cellulitis, and the whole immune system problem came up, so any ideas of further surgery was out. Then, we had to deal with the PVNS. Then the mesh, then the hip... geez, what a "long, strange trip it's been".
      We've been around a lot, now let's bring it home. :)
      Shulamit... you gave me the optimism and eye-opening possibilities. I look forward to continuing on our path together!

  2. You sound terrific. Sometimes things just click, in the right time and place. B"H, it's time to get your circuit board rewired properly.:-)

    Shulamit sounds like a great find.

    lots o love,
    dev from NJ