Thursday, September 3, 2015


My world these days seems fragmented; compartmentalized. I have two different doctors for my two different thigh joint issues.

I go into the hospital (Soroka here in Be'er Sheva) on a daily basis to support my friend who is going on her third month there. I see her doctor often. That would be no big deal if he wasn't the same surgeon of my own NF history, but he is. I'm compartmentalizing that. No other way to deal with it. So, I deal.

I leave the hospital world behind me when I walk out of there, but things ruminate in my head when I am with my children. Still, I work on closing that door when I am not in that world.

Yesterday the compartments overlapped a bit, and it was weird. what happened was that since Shifra's new junior high school is right across the street from the hospital, and since she was finished early because it is the first week of school, I told her to come meet me in the hospital. She knows my friend and also wanted to see her. On our way into my friend's room, Shifra and I holding hands, we ran into the surgeon in the hallway. He noted that she is not 4 years old anymore, comparing to the last time he saw her, when I had NF. Yeh, that was weird. Our visit with my friend was fine, and Shifra was fine with the "sick world". For better or for worse, it is not foreign to her, obviously (I think she may have "doula" running her veins, too). But then my friend started to have an attack of tremors from fever, and it got scary quickly, and Shifra needed to leave the room and wait for me outside. Then I called her doctor from my phone... she wanted him to know she was in trouble [again] and that I have to leave to go pick up my own kids, and could he be with her because I didn't want to leave her alone..... my compartments got all tangled up. I called him from my phone. It is just beyond strange. I need to step back, it's too tangled. I need stronger compartments. I need stronger boundaries.

I want to start playing horn again. I am vividly dreaming about it. I need to structure time to do that.
I have my own complicated health things to take care of, which often means making phone calls and sending faxes and being organized. I need boundaries, to take care of myself and my family, and compartmentalize my friend's needs, but at the same time give to her when I am with her, with all my heart. Many hours have been spent in the hospital over the months. That is my choice. I am now beginning to see that it is going to be a long haul. I have many priorities, and I am readjusting my compartments.

OK, now a bit about my own health stuff; my "compartments", as it were.

Right leg: Monday. I had the MRA test privately, paid many thousands of shekels out of pocket. I didn't want to wait until December to get the test and schedule surgery. We are planning to bill our private insurance for it, and planning that they will pay. They say they pay for private MRI's, but not MRA's (arterial). We'll see about that.

It is an awful test. This is the second time I have done it on my right leg. First time was two years ago and it was awful then, too. It involves sticking a large needle with radioactive dye into the femoral artery, through the joint itself, in the groin. It hurts like hell. That is, until the Lidocaine (local anesthetic) takes effect. All this for the privilege of seeing what damage lurks in the arterial areas of the joint itself. Or something like that. Then, after the shot takes effect, the test is a regular MRI, in the white tube, with lots of jackhammering and pounding noises. My PTSD hates those noises.

I limped back into the car (Robert was with me, thankfully), and spent the rest of the day in bed, proverbially licking my wounds. Apologized to my friend that I couldn't see her in the afternoon. I had thought I could. Yeh, right.

Left leg: Tuesday. I went into Tel Aviv with my right thigh joint still aching, but not in acute pain. I stopped by my friend in the hospital in Be'er Sheva before I got on the train to Tel Aviv. She wanted ice pops, so I put those in the freezer for her and sat with her for only about 15 minutes before I had to go catch my train.

I got GOOD NEWS about my left thigh joint! Not only did the last MRI (in June) prove to be PVNS-free, but the fluid that had been around the joint for the past three years has mostly gone away. My doctor (orthopedic oncology) said he could have never imagined that three+ years after PVNS, and another surgery thereafter, that my joint would looks so clean. He said my MRI was pretty. Aw, gee, thanks, doc. ;)

My follow-ups at ortho-oncology used to be every three months. Then it went to every six months; the bi-annual MRI. Now, he said he doesn't need another MRI until next year. I've been sprung for a year! It's good news. Less traveling into Tel Aviv. fewer MRI's, more quality time for good life.
I told him I am planning the surgery for the right thigh joint, and he said he feels confident that I can depend on my left joint to carry the weight during healing the right one. That was also comforting. He said to listen to my body, and give lots of rests for my left leg after surgery- it still has scar tissue and will tire easily. I said "OK, boss".

Then as good fortune would have it, dear friends were in Ichilov the same day I was, with their daughter for a medical visit. We met up after our appointments and went out for sushi! It was such a treat to have a positive day at Ichilov and enjoy life together with my friends. Entirely memorable. :)

Now, as you can see, I took the morning off from going to Soroka, to my friend, so I can relax and write. I also will be starting to play horn soon. I gotta write about it first, though, right? :)

Now to sum up all these different compartments, I have one very important thing to say:

I am so happy to be off the Fentanyl.
I got my life back.
I feel active, alert, and
I am positive that it is better to live with the level of pain that I have than to be doped up.
Thank you, Gd, for bringing me to this place in life.


  1. Thank you G-d. Now ask that He continue to shower you with His benificence!

  2. wow girl, you are a teacher, Im sure that for many, bur certainly for me...!!
    have a blessed shabbat!!

  3. Sarah what a powerful piece. Our resilience has so many levels. May the promise of Elul give you strength

  4. You are very brave and very busy. All summer the CBC news was dealing with Fentanyl deaths from overdoses as it is getting mixed with street drugs ..very scary. Glad you are over it. Hope you will find something to relieve the pain. Keep well and keep enjoying your great family.