Sunday, January 18, 2015

we are growing apart... I need you less. For today.

I have started writing my next blog entry twice already. Just hasn't felt right. My blog writing style is changing, and I have to learn its changes. We're growing together.

Actually, I am feeling like I am growing apart from my blog a bit, at least for now.

Gone are the days of agony and anguish, many hours and entire days in bed. I do still have the occasional day in bed, but it is much more rare. I do feel the need to give medical updates every now and then, if for nothing else than the chronicling aspect of my health journey. Though of course, each medical trial brings with it its emotional counterpart. That is, if I give emotional meaning to it. I find I am doing that less; giving emotional responses to medical setbacks. It is all commentary to the facts. I can choose to create that commentary or not. Recently- I don't know- like the past few months maybe?- I am just having less running commentary in my head about the medical stuff I go through. So that is why, for now, maybe even just for today, I am going to give an occasional medical update without much commentary about it.

I am learning "mindfulness" training, together with meditation to help chronic pain. This is part of the program that the neurologist set forth for me to help deal with chronic pain, and from migraines. The rest of the program is to start physical therapy with a special neurological physical therapist, and also start psycho-therapy with a medical-oriented therapist. The physical therapist appointments start at the beginning of February.

This neurologist is starting to be at the forefront of my story. I intuitively feel that the program he has started me on is the right direction for me. That, combined with me going off the Fentanyl, is the future of my healing. Dr. Ezra (the neurologist) also agreed to be the one to submit the request for the medical Cannabis, so I will be monitored here instead of having to go to Jerusalem, which is what I wanted the whole time. I just didn't know who the doctor was going to be to do that for me here in Be'er Sheva. He actually tried to send in the request for me last week, but the computer crashed at the website. (I could make lots of jokes about a computer that crashes at the website which is for requesting medicinal Cannabis!) He said he'll do it this week- I will see him on Wednesday when I go to the meditation group.

In short, I will just try to list here some of the medical problems I have come up against lately, but without a lot of commentary about it. It is what it is, right?

1. restless leg syndrome (RLS) getting worse. It is a result of going off the Fentanyl.
2. The solution I found for the RLS was to wrap a heating pad around my leg and I could fall asleep with that.
3. The solution got nixed when we saw that it made my lymphodema swell up terribly.
4. The RLS messed up my sleeping at nights.
5. Even on the nights I don't have RLS, I haven't been sleeping deeply- or at all- almost all night.
6. This has led to increased migraines and exhaustion.
7. I have lost my appetite for some reason, and my hair is coming out in clumps in the shower. Don't know why that is happening, but I will talk to my doctor about it. I feel that the sleeping problems, appetite loss and hair loss is all connected, but we don't know how yet.
8. My doctor put in a request for me to do a sleep clinic night, but it hasn't yet been approved.

That's about it, in a nutshell!
How is it to read my "stuff" without commentary?

PS- I am writing less, also, because I have decided to not be on the computer for the hour before I go to sleep. Since I am going for early bed times, I don't often open my computer at night for anything more than looking at email or occasional Facebook for a few minutes. My kids need me in the evenings, 100% of me, until about 10PM. Then I try to end my own day as well. Since the sleeping problems have crept in recently, I will be even less on the net to give myself ample opportunity to sleep when it is night time.
Remember my "new year's resolutions" from Rosh Hashana? That I want to go off narcotic pain medicine, and go to sleep early so that I can write and work on my book in the mornings? Well, I'm getting there on both fronts. I'm getting there. :)


  1. Kol hakavod to you for heading to your goals! Do the stretches described in the EMPOWER Yourself book. They help lots of people to defeat RLS or simple leg cramps.

  2. It is refreshing to see a list like that from my point of view!
    You sound like you are coming 'home' to your soul.
    I am glad for you, and I am glad for your soul. You are good company ;-).


    1. "Refreshing" though- what do you mean, "from my point of view"? Ya lost me. How is that list refreshing? Because it is just a list with no commentary?
      And I like the idea of coming home to my soul. It's a beautiful idea.

    2. From my point of view - I wrote to emphasize that it is how I perceive it. My way of seeing things, not necessarily a 'truth'.

      And it is refreshing to read it for me because it states the facts without attaching meaning to it. It is what it is - and you are mindful to it. You notice it, acknowledge it, and you are looking into it.

      Does that make sense? I wrote you because you asked how it was to read a list like that - so I answered :-).

  3. Congratulations – you have managed to remove the emotional aspect of your medical issues. Great progress.

    I recently read something related to getting to sleep more easily. A friend noted that it helped her RLS since she managed to fall asleep before it became a big problem. The procedure? Believe it or not – inhale to the count of 4, hold that breath for a count of 7, then exhale for a count of 8. Yes, you will feel as though you are exhaling more air than you are inhaling. The whole idea is to get your heart rate to slow down. Repeat until you’re asleep. I hope it helps.

    I am very glad to read that the meditation etc. is helping you.

    All the best,

    1. I know of 4-7-8. I have given that tool to my children. it works for me sometimes, but not when the RLS is strong.
      Thanks, as always, for the encouragement!

  4. I've discovered that singing and dancing with friends helps heal whatever ails :)
    Miriam Devorah

    1. Yes, yes, yes! We had such a great time dancing to 80's music at your place. It's good for the soul. Music can transport people, for sure. I had forgotten how nice it can be. We gotta do that again soon.

  5. Lovely to read that some peace is coming to you! Now we just need health as well x

    1. Rachel, yes, but as much as that is true, that we need more health in the equation, I have come to a realization that *this* is my life, post NF. There is a good chance that from now on, there will be health issues to deal wiith. I have felt since i got sick that once the body gets thrown off in such a big way, it is hard, if maybe not possible, to get it back on total equalibrium again. There is too much cause and effect to stop that sysle. Does that make any sense? The way I see it is that as llong as the issues don't put me in the hospital, i am doing OK. They do interrupt quality of life (sleeping issues especially, as well as the chronic pain), but I deal with these things as they come up, and try to maintain regular life as much as possible.
      Thanks for your encouragement!!

  6. Read it and I am so sorry for your suffering, May Ha Shem send you a complete and perfect healing.