Wednesday, May 18, 2016

The present, the past, and the passed (away)...

I don't want to tempt the evil eye here, but it's looking like I may be over the hardest part of this weaning process. I did have to go back to the hospital on Saturday night, with a killer migraine, though. That was the last migraine I've had (but it's only Tuesday). I had to go to the ER because I had no medicines to help with the migraine. It got really, really bad again Saturday night. This time, there was a neurologist on duty in the ER, and he made a plan about how to "break the cycle" of migraines and rebound headaches. They gave me a choice to be hospitalized again, but I didn't need that, they gave me what I needed to stop the pain. More importantly, I have some meds to deal with it if it happens again. They aren't great medicines for me, but it'll get the pain down without putting the medicines into my body that I just got off of. We still have a lot to do to figure out if there is a known cause of the migraines, but whether or not we figure that out, the fact remains that I have to manage them when they happen. I'll see my neurologist next week, and probably have an MRI... which could take a while in this country.
Currently, we're counting two and a half days with no headache.

To make matters a little more (but not terribly more) complicated, the company which is supposed to deliver my medicinal Cannabis messed up my order, and I am now completely out of CBD until next week, if I want it delivered to my house. I can get it earlier if I want to travel into Tel Aviv to get it, but of course, that could very well cause a migraine (especially in the present heat wave- high yesterday hit 111F!!). So, now I get to see if I have a withdrawal from *that*. So far, I haven't. Interesting, right? I just had to stop taking it, cold turkey since Sunday, and no withdrawal symptoms. I don't know where I stand on the whole issue of the Cannabis.... it never helped my headaches, and I felt that I am just needlessly putting another medicine into my body which I have to keep up with and spend money on. And my body is so clearly telling me to get off everything, I have allergies to a ton of medicines. I actually need two red bracelets when I am in the hospital because one doesn't have enough space for all my allergies. I feel that I need to try to clear my system of it all. It's NINE years now since I had NF. Now is the anniversary. I've been on and off many, many medicines over these years. I feel that it would be not just a physical freedom to be off of them, but an emotional one, also. In a big way. That is, at least as many of them that are wise to get off of. So do I need the Cannabis? I haven't gotten off sleeping pills yet, that is my next hurdle (but not at least for a few months. I am hardly stable yet from the migraines). Maybe it'd be good to have the Cannabis to help that weaning, but then, well... then I am on Cannabis. But maybe Cannabis can be the absolute last thing I'll go off of? Question is, how much is it helping me? It's the first time I've ever gone off a medicine cold-turkey and not had a withdrawal. I was on it for about a month. Well, I'll get the delivery on Monday. I'll take it for the next month. One thing at a time. It does help me sleep, actually.

Thanks for thinking this all out with me. I'm getting there.
I'm getting there.

Next Thursday is the anniversary of when I woke up from the coma. It's the holiday of “Lag b'Omer”, traditionally for me a day mixed with gratitude, sorrow, pain, and yes, trauma. All I have to do is picture me back there, and picture how it felt when I first saw my body after NF ravaged it, and hundreds of different flashbacks come flooding in. I choose not to dwell on them, and am grateful that I have that choice now. One cannot always choose when to open the gate to trauma and when to keep it closed. I worked hard for that choice.

This year I have a special event that will help change the face of the holiday for me... the Elton John concert! The gift from so many of my friends who have seen me through all this, through thick and thin... it is no coincidence that it is on Lag B'omer. It's another “tikun”... a repair for the damage done in the past.

(did I tell you that my friends also collected enough for a pre-concert dinner? I am sooooo excited!!!)

And also no coincidence, the concert is after my neurologist appointment, on the same day. Please Gd, my brain nerves will cooperate with my plans for the day.

It's all good. It's all about repair.

Update, on Wednesday:

First major-ish one since Saturday night. I took the steroids that hopefully will help soon, and I have another line of pain management as well, but not ideal for me.

I had the beginnings of this headache yesterday, but it didn't grow bigger... I didn't take anything for it, and used my meditation recording to go to sleep. Tonight it grew bigger. :(
Not at epic levels, but it makes me so nervous, which of course makes pain higher.

This update also includes some very sad news: Robert's aunt, who was really an aunt to us all, passed away this morning. She had been sick, and we expected it was going to happen, and she went quietly in her sleep, at the ripe old age of one-month-short-of-her-90th-birthday. We were planning a trip to NY to celebrate her 90th birthday with her next month.

Now Robert is on his way to the US for her funeral. His aunt Ahuvah (his mother's sister) was a very major part of the family. In many ways a matriarch, although she never had kids of her own. My kids are very sad about her passing, and that they hadn't seen her for over two years (except Shifra & I, who saw her when we were in America in August). She is the last one of her immediate family.

Tonight, as we were walking the dog, Azriel asked me "what if, Gd forbid, you get sick while abba is gone?" It was a poignant question. Just last week I was in the hospital. My unspoken words were that I am nervous of that, too. They depend on Robert for the backbone of the family. I can very much be that, also, but things are much more fragile with me. Let's hope things will be stable. I am strengthened knowing I have a tremendous loving, caring community, and many friends surrounding me. Everything's going to be OK. Whatever OK means at any given moment.


  1. Randomly found your blog and I'm totally with you on the wrong cannabis thing. Tikun olam told me that it was a very wet winter and some stains didn't grow well. They didn't have one of my strains this month which is super annoying because it's my daytime one. Also I don't find cannabis helps with my migraines at all but I smoke it so maybe it's different.

    1. wow, it's very unprofessional to just not have a certain strain that they sell on a regular basis. Do they have a silimar one to recommend?
      I was clearly told it is supposed to help with migraines. How it is delivered might make a difference, who knows. I'm not convinced it'll help with migraines. Remains to be seen.
      Thanks for popping in.

  2. You are in my daily prayers. You're a true fighter and doing great. Sorry there is so much pain involved. הי ישמור אותך

  3. Remember that you are making progress. I know, when you're in the midst of it all it's hard to remember. Keep on going ...

  4. Hi Sarah,

    I am glad that you have not suffered unduly from being without your daily dose of cannabis oil.

    However, be warned. I have read (please correct me if I am wrong) that cannabis has an affinity for fat so that it can store itself in the fat cells in your body. Because of this, I have read, it can take up to a month to clean the stuff out of your system.

    I certainly very much hope that your body will go on as it started when you quit cannabis for good, and that you do not have to go through the miseries of withdrawal again for that.

    Shabbat shalom, and may you sleep well and have a lovely, pleasant Shabbat.

    All the best,


  5. so sorry for the loss of your loved aunt. hamokom yenachem etchem.

    wishing you a complete refua, and stay strong and healthy.

  6. Baruch dayan emet. May you gain strength and courage in memory of Aunt Ahuvah. And I'm available for the concert should you need a chaperone.

  7. Hi Sarah,

    I was really sorry to hear about the passing of Robert's aunt. If you need help with any thing while Robert is away, let me know.

    Shabbat shalom!

  8. Hi Sarah. You are a true fighter and deserve the concert big time
    He always makes me feel better and you will enjou it. Saw you at the nail place and you looked amazing.You are an inspiration.Debbie

    1. It was nice to see you there! The pedicure was so lovely.
      Good also that seeing you reminded me to take care of my ENT doc stuff, being that my ENT is your husband. :)
      We started to try to figure out how to deal with my misplaced cartilage in my throat from my recent intubation. I really want to try to get my neck things back in place so I don't have this click every swallow of my life. It got prioritized on a lower part of the totem pole when other issues became more painful.
      Thanks for the encouragement!