Sunday, May 17, 2015

Jerusalem Day 2015. Music, medicine, and marijuana

Well, that is a nice (half) tikun!

(Tikun is a sort of healing the world, making something better than it was before you came into the world. It is an integral part of Jewish life, and I might even say every one's life.)

Which tikun am I referring to? Well, I wanted to practice horn again today. I took it out, and realized there was nowhere suitable to sit. I used to do most of my practicing in our bomb shelter room- I had carpets up on the walls and such. Then I converted the shelter into my "doula room", where I taught birth preparation classes to couples. For now, I am playing up in my bedroom. But, I couldn't find an appropriate chair to sit in! Which one turns out to be perfect? The plastic folding chair which I use to sit on when I shower. Since I got NF, I am not so steady on my feet in the shower, a combination of the hot water making me a bit light-headed, and having pain, makes me very nervous in the shower. I have used a plastic chair ever since. That same chair is exactly the right size and is comfortable for practicing horn! Interesting... it's a "half" tikun because I do still use it in the shower, but there is a "healthier" use for it now, too! If it's dry, that is....
I am playing long, steady pitches. Lots of them, with my tuning machine so I can retrain accurately. I realized today while playing that this is a real opportunity for me to fix some of the consistent errors I had in my playing before. I never really had the time to sit and practice long tones. Not since college. Now I can do it, and hopefully gain precision in the area I was weak before. It's a way to build up the muscles again, and gain accuracy. It feels great to be with my horn again. When I play, it feels like a long-lost appendage returned to my body.

Gapey is beginning to hurt a bit, though. I now remember from when I played the times I did after NF that it put a lot of pressure on Gapey. When you play a wind instrument, the pressure to push out the air comes from the diaphragm, and pushes against stomach wall muscle. Gapey covers a large amount of the stomach wall, and the muscle was damaged with the NF. I had forgotten that it hurt when I played. Hmmmmmm.... don't know if anything can be done about that.

I did get to see Azriel's class play on Friday. It was so nice! He had lines in the play iteself (about reuniting Jerusalem from Jordan during the six-day war), then after the play they made a special announcement that he would play guitar. He played in front of the whole elementary school "Jerusalem of Gold" on his guitar. He was cool as a cucumber. I was so proud of him! I didn't play solo in front of anyone until I was in 6th grade. He's in 3rd, and has only been playing guitar for 4 months! Next time I have to teach him to take a bow. :)

Azriel in the middle, his principal on the right, his teacher standing
in the middle (behind him), and the music teacher on the left.
Him playing... a friend holding the microphone
by the strings, and his teacher holding his music.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Last night I started the weaning process again. I have two doses to go until I am off the Fentanyl. It could be more than two doses, I'll have to see how this goes. I cut out half last night. I have a patch of 12, and I cut it in half. It is a big drop (50%), so I'm going to have to see how it goes. If it is really hard, I'll make the next six go slower.

Why did I start up the weaning again? I made the decision after this past Shabbat (Friday and yesterday) dealing with a lot of pain in the right joint where there is the impingement and torn labrum. I realized that I am going to have to get that fixed at some point. It is very painful, and it's not going away. So, I want to be off all the Fentanyl so I can do the surgery; to go under general anesthesia without having Fentanyl in my system. The main reason my orthopedist decided he will not operate on me is because I have too many drugs in me, and I am a high risk. I don't know which orthopedist will do the surgery, I have to get in touch with our "medical rav" to get a recommendation. Last I heard, though, my orthopedist is the best one around for this specific type of surgery, and he's operated on me twice (arthroscopic hip surgery). I'll be interested to see if our medical rav has someone else to recommend, or if I'll go back to the other one and hope he will operate on me in better health. I am lucky he didn't operate on me last year when it was scheduled.... my body wouldn't have been able to heal well with everything else that was going on.

I have to schedule my MRI for next month. After that, we will know if there is PVNS in that hip or not, and then I can make a proper decision about how to proceed. Did I tell you that the results of the CT were fine? It's good, of course- it rules out (in most probability) hernia, and/or cancer. It doesn't rule out PVNS, however. That can only be seen with an MRI. So after my next MRI I'll know what I need. I gotta schedule that....

I am doing a sleep clinic at the end of this week. My GP ordered it long ago, when the restless leg syndrome started, because I couldn't sleep. That was all together with the weaning, too, so that was also giving me insomnia. Now I am weaning again, and very well may have a hard sleeping week. I talked with the lady at the clinic about that, and she said that they can analyze my sleep as long as I have about three hours deep sleep there. She said the medicines I take have no effect on the clinic evaluation. How I sleep is how I sleep. The question is, I pretty much know that nothing can be done for RLS, so how would an evaluation help? Well, what I do know is that the cannabis drops can help, but I wake up with a headache when I take them, so that isn't an option. I did get in touch with a person today who specializes in medicinal marijuana (thnx Jane), so I hope that through him I'll get a direction to figure out which one is good for me.

Three steps forward, two steps back.
Last week's steps forward were great, though! I still have that one step footage... it's not lost, and never will be. We'll rebuild, one step at a time.

(PS- today, Jerusalem day, in 2007, is when I had my skin graft surgery, two weeks after I had the NF. The description of that morning is here. What happened two days after the skin graft surgery left one of the deepest traumas in me from that time period to date. Here is a very brief descripion that Robert wrote at the time. If I had written it, it'd be much more traumatic. The anniversaries this year seem to be going by with less bravado than previous years. I am grateful for that.)


  1. Thanks for sharing, prayer sent for continued healing. Love you my friend.

  2. Azriel is a nice little "acorn" - lots of nachat!!! and hope the weaning goes easily, and everything else falls into place without a ripple. HUGS!!

  3. I'll never forget when you and Peter Kashin played at our wedding party. So glad to see you're back to playing, how ever challenging it may be.
    You might want to consider working on breathing and other exercises to strengthen your abdominal muscles gradually.
    BTW have you tried magnesium of any form for the RLS?

    1. Yes, I took magnesium for a long while, it didn't help the RLS. There are a few different types of RLS- one is helped by Magnesium, and one is not. The one I have is from surgeries and severed nerves, not lack of minerals making the muscles react.

    2. You're an inspiration, Sarah! Your focused determination and sense of humor are so heartwarming. It's an honor to be your friend.

  4. Good to hear that you feel up to practicing again. Long may that last. If you ever feel up to driving to Hod HaSharon, I know an orchestra that could use a horn player...

  5. I loved seeing Azriel play!
    And I love reading you getting reconnected with your horn -
    I hope to do that with my cello one day!


  6. SO glad to hear you are playing again!