Sunday, January 17, 2016

Sounds a lot like regular life, right?

It's been a while since I've posted, I know. I miss you! :)

If I don't post for a while, it is usually one of two things ... either black or white. Either sadness or euphoria (Billy Joel lyrics). Either sickness or health.

In this case, it's a combination. But overall, I am in a Good place, baruch Hashem.

Lots of good, mixed with some bad, and a few so-so's thrown in there for good measure. Sounds a lot like regular life, doesn't it? I think that's what is slowly happening, I am getting back to regular life. I am starting to make myself a schedule again, after not having any schedule for many years. I joined a gym, and have a plan for going to the gym combined with writing my book. The gym is in the huge mall near my house (boasting to be the biggest mall in Israel. I hate that mall, actually- far too much walking- if you are shopping- with escalators poorly placed for handicapped). The good thing is that I can park my car near the entrace with the escalators leading to the gym, do an hour work-out (mostly physical therapy, strength-type stuff), then go to one of the cafes in the mall (one is down the same escalator that leads to the gym), to set up my laptop and write. I find I write best in a cafe. Write my book, I mean. I can blog easily from my bed at home, but for book writing, the kind of concentration I need comes easier for me when I am not at home.

I feel really good about this plan. I have re-started writing my book, and it is going really well. I was stopped for about a year. It was a combination of the hardships of going off the Fentanyl, dealing with 10 months of narcotic withdrawal, and then this surgery I went through almost three months ago.

My book was also stopped at a point where I couldn't work out a good transition. I am now deep into chapter two (of 8), and I knew that I had to introduce the main theme, and it was too big for me. I couldn't think of a transition from the details of the story to the large theme the book is based on. The theme comes from a dream I had while I was in the coma. It took me a long time of sitting with it to realize how it will all fit together. A few weeks ago, I got an inspiration... one small sentence... that catapulted me into that transition. I wrote that sentence down at midnight on pen and paper, and that was all I needed. The right thought at the right time. Thanks, Hashem! :)

So, the plan is that there will be days of gym/writing, alternating with days of gardening. Last year, I couldn't do any gardening. Not only because of the above reasons, though. It was, what is known in Judaism as a sabbatical year (שנת שמיטה). It is a Torah mitzvah that is commanded of Jewish people when they live in Israel. Someone outside of Israel cannot observe this incredible mitzvah. It literally gives a sabbatical year to the land itself. One is commanded to not do any farming, plowing, gardening, planting or harvesting of any sort. The land of Israel must remain un-worked for a year. It is the year we give back what the land gives us. There are many laws and instructions on how to deal with produce during the sabbatical year. It is basically considered holy, and disposing of the produce or it's byproducts must be handled in a certain way. It's very cool, in my opinion. It brings holiness into our entire eating/shopping experiences. It is one of the things I adore about living here.
Anyway, I didn't do any real gardening, and now the garden(s) need help. I couldn't do it last year anyway with all I was going through physically, so Hashem let me also have time off to work on what was most important for me; going off Fentanyl, and having the surgery.

I look forward to gardening in the next few months. I've already planted a few new plants near our front door and I love seeing them each time I walk in and out. And I have more plans (and plants) brewing....

I hope my hips can handle the gardening. I feel I can do it. I'll keep you posted!

A few other things:

I have been free of lymph-edema since my surgery. The surgery made me stop wearing the pressure garment because the incisions were too sore. Then I saw that I wasn't swelling as much as I used to in the NF area, so I am keeping off the pressure garment! This is *huge*... I wore it for 7 years. It's tight and hot and restricting. I am liking not wearing it. At the same time, though, I am still not used to how clothes feel without my prosthetic pillow that the pressure garment has, which fills in Gapey. I can't put the pillow anywhere without the pressure garment having the pocket for the pillow (the garments are all custom made, of course.) So without the pressure garment, I have no prosthetic pillow. I'll get used to it. Or not. We'll see.

I am also trying to get used to my throat "click" issue. I hate it, truthfully. The most frustrating part is that it wakes me up sometimes in that light sleep time before you really fall asleep... it makes a sound in my head, and that mechanical click feeling when I am just swallowing my own saliva, and it jolts me out of light sleep. Not good. So far nobody has come up with a solution (apparently it is a dislocation of tiny cartilage), so here I am trying to get used to it. Apparently it's an extraordinarily rare occurrence from my head being in a bad position during my last surgery. *Of course*,'s me. Something strange and incredibly rare was bound to happen. (my cynicism showing through!) I (we) just could not have guessed what it would be. I keep saying to myself at least it isn't painful. This is the first complication I have experienced (of so many) that isn't painful. Gotta count your blessings when you can!

With this, I am going to go to sleep.
Now, if I write less frequently, you understand why. There are actually other reasons, too. Those have to do with supporting a few friends who are having medical crises at the moment. I won't get into the details here, but I choose to give my time to support friends as much as possible in their times of need. Those times can get very dark, dealing with medical crises. I Know. I hope my experiences can help others.

Have a good week to all!
May we have good news on all fronts, and strength to handle all life hands us.


  1. yay! it seems your strength is back. So glad you wrote.
    dev from NJ

    1. Getting there, Dev, getting there.

  2. Really wonderful. May it continue. BTW, would it be possible to have a pillow holder made of a different, softer, no-cling, cool material that isn't constricting but still protects the sore spots? Just a thought.

    1. I don't know... I think it needs to be held in place by an elastic-type material. Gapey is in a strange place... very hard to keep any bandages or anything there. I can't imagine a close-fitting, breathing-type of material, but maybe there is one out there.

  3. As always - I am awed, blown-away and totally inspired by your strength, your perseverance, your self-awareness and your absolute determination to get through everything.

    Healthier and healthier, dear lady. Thank you and keep on getting stronger!

  4. you sound really good! may you continue to get stronger, and keep busy for good things! don't overdue the work, when you get tired, rest a bit. cheering you along and davening for a complete refua!

  5. Good luck we are rooting for you. Silly thought but if your throat click is from wrong position perhaps a chiropractor could help? My Pilates teacher is always talking about one who is fantastic...are you interested? Hope you can stay without your pressure garment. I wore a stomach belt for almost 2 years and still need it sometimes and this country is just too hot. Shavuah tov

  6. Great to hear good news. I love your approach. Did you try accupuncture of Homeopathy for your throat? My gut feeling says one or both of them might help
    ...or Cranio-Sacral therapy for that matter.
    (I am not qualified in any of the above but studied enough of each one of them as part of my Naturopathic training to give me that hintch)

    1. I am looking into cranial sacral therapy. My gut feeling (and recommendation from a friend) says that may be the way to correct this. Thanks!!

  7. You sound upbeat! Good for you. Progress on several fronts; you’re doing great. Keep up the great work.

    Shavua tov,

  8. This is awesome Sarah! your writing back on track, and such changes! I congratulate you and praise you and cheer you!!! YOU HAVE SO MUCH TO GIVE, SUPER MAZAL TOV!!!

  9. Glad to hear things are going pretty well. Hope it stays that way!

    BTW, have you noticed that our lovely mall has really awful benches to sit on? They seem to be chosen more for their super-modern aesthetic than for comfort.