Monday, May 25, 2015

The Cannabis saga... and playing dress-up.

So they say that the definition of insanity is when you keep trying the same thing, getting the same results, yet keep trying anyway. It is like your mind keeps saying "this time it'll be right/different".

Well, it never turns out differently!

I am referring to the cannabis oil which I occasionally take to control pain and restless leg syndrome. I think that I have been in denial that I need any medicine at all. I don't *want* to need any medicines at all. Indeed, I am nearly off Fentanyl- just ONE last dose to take away.... at an undisclosed date, meaning I am taking only 6mmg of a patch!!!!! I made it through the last dosage cut. It's been nearly a week of insomnia and other withdrawal symptoms, and the RLS getting more intense. Since I cut that dose last week, my RLS feels like a constant low humming vibration in my entire left leg. Sometimes I have to slam it on the bed if I am lying down because it makes me CRAZY!! You really can't imagine. Doing that doesn't work to end the creepy feeling, just to let out a bit of frustration. Sometimes if I can lie on my left side and put my body pressure on the leg, it covers the annoying niggling vibration going on through my nerves, but then, inevitably, Gapey starts to hurt because I am lying on the edge of the skin graft- VERY uncomfortable. Lying on my left side has a staying-time of about 10 minutes. Then, when I have to turn over because it hurts too much, the RLS is right where I left it before I tried to smother it.

So, yeah, I took the only thing in the world which has the strength to quiet these misfiring nerves- a few drops of cannabis oil. It worked, and I got to sleep, bless the Good Lord. But, as usual, today I have been nursing a medium-pain-level headache all day, and dizziness as a side effect from taking the drops. This species of pot is not the right one for me. I spoke to a specialist (Jane- he is *awesomely* helpful!! How can I thank you?!) and he helped me figure out what to try instead of the one I have. I need one with less THC and more CBD; those are the two basic ingredients which go into medical marijuana. The chemicals, if I understand correctly, come from separate flowers- one species of flower is called "Sativa" and the other is "Indica". They produce different effects, and one needs to figure out where one's comfort level lies, with the greatest amount of medicinal effect for that person's problem. So, it took me long enough, but because of having yet again the negative after-effects of taking the cannabis oil, finally today I got in touch with the company which this advocate recommended, because of their variety of different percentages of each ingredient available in their oils. The website is impressive, and I am pretty sure I will find what suits me for the pain, and the RLS. Gotta pray on this one, that I don't have to go through too many trials and negative outcomes to discover what works best with my body. But then we gotta ask ourselves; what is too many trials? Hashem knows how many trials we need. Gotta trust The Boss.

What I know, is that right now, in bed with my laptop, my leg is hopping internally and externally. You can even feel the disembodied out-of-control vibration if you put your hand on the part of my leg I am feeling it strongest. It's so oogie!! How am I going to get to sleep? Pray. Withdrawal sucks. I am almost done. Just another few weeks of this. But the RLS, according to my research and what the doctors have told me, is quite possibly here to stay. I want a neewwwww drug... (remember that song by Huey Lewis and the News?)

I cancelled the sleep clinic test last week because there was no point in doing it the way my sleep is these days. I will do it when the weaning is completely finished (it's gonna happen! Soon I will be FENTANYL FREE!!!!). I wonder how much worse the RLS can get- nervous to remove the last 6mmg of patch.

So, I hope the new cannabis company will get back to me tomorrow (I just wrote them today) and we can get more suitable stuff for me *fast*. In the meantime, the patient advocate guy who I consulted suggested I cut the oil I have now in half with regular olive oil so it'll be less potent, but hopefully still effective. I'll try that.

In other news, today was a free day that the kids were off school. Nothing to do with American Memorial day, though... it's because it is the day after a major holiday in which the world outside of Israel celebrates two days straight of this holiday (Shavuot), and in Israel we only do one day, with the second day being a play day. So what did we do today? Played! While I was silently dealing with a nagging headache and dizziness, I sat on the floor and played Lego with the kids for a long time, in our pajamas. Maybe an hour? two? Lost track of time. We made all sorts of neat stuff. Then I let Shifra do a make-over on me. Hair, make-up, the works. (she gave me a pedicure on Friday before Shabbat... I still have flowers and sparkles on my toe nails from that!) Then she went into my closet and played dress-up. Dressing me up as well as herself, in my clothes. And she tried to make herself look like me with my brown curly-haired wig and one (or two or three) of my hats. She's such a card! Here are some of the results:

My redhead with my brown curly wig on! My hat! My dress! My earrings! My make-up!
My daughter. :)

Striking a pose
Did I mention she also dragged out the pumps
I wore for my wedding?
She's got [over-sized] style, that one!


I'm grateful that today I could laugh with my kids (all of them with their own shenanigans), sit on the floor to play Lego's and get up without drama, make healthy food for them, and have an intelligent, important conversation with all of us together. Me & Robert began discussing an important (philosophical/political) issue, and the kids got very involved and interested in what we were discussing. It turned into a real educational discussion with the whole family (well, except Dov, he wasn't home). Good things to be grateful for. Gratitude is necessary. I have lots of it. Don't let my complaining overshadow that. :)

16 comments :

  1. the one where she is looking off to the side and a close up she TOTALLY looks like you. kinda freaky!
    Jane

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    1. honestly Jane, I don't see it! What I see is Shifra dressed up, but looking like Shifra dressed up! She looks funny wearing my brown hair wig, so out-of-place. Also her dimples give her away- I don't have a punim like that one!

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    2. same shaped eyes. and I have seen that expression on you a million times.

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  2. I just opened your fb to write the same comment as Jane - in the picture you call "striking a pose" she looks exactly like you!! it's amazing just how much. and the fact that you are focussing on "but she has red hair" is just that you can't see the resemblance cause you see red, but believe us, it is so

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    1. and in addition, great writing as usual!

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  3. Sarah, I'm so happy to find you here, and so sorry to hear about your illness. I hope you make a full recovery! Your children are beautiful.

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    1. Suzanne, it's wonderful to connect with you again! I have a beautiful picture of us together holding our horns, all gussied up for a concert. I'll try to reproduce it here for you. I am playing horn again, after a 7ish year break because of illness. But, I'm playing. It's coming back so quickly! After one week of long tones and lip slurs, I have some range to work with. It's an amazing, amazing reunion. Wish you were here to play duets with me (ok, 6th grade level slow ones, but no matter!) A little wine and it's all the same anyway.

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    2. Sarah, I'm so glad you are reconnecting with your horn! Duets and wine sounds great.... Skype? I so wish I could come to Israel.

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  4. Ok, I went back to the picture ("strike a pose") and yes, I can see it now. It is kinda freaky!

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  5. Whoa, she knows how to mimic your body language perfectly! So glad you and the kids shared genuine fun. Um, could a water bed alleviate the Gapey-Scrapey pain when you rest on a mattress? I wonder what it might do to alleviate the RLS, too.

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  6. Glad you had a kids day...enjoy them they grow up way too fast! We are having an adult get away...no kids. Hope your experimenting works out.

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  7. Those clothes change Shifra's appearance entirely. Amazing. Glad you were able to enjoy playtime with your kids.

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  8. May you continue to have much nachas from and fun with your kids!

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  9. Had to have another look to figure out who it was...cute ! Enjoy them all.

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  10. I have great hope for you, Sarah. I believe it will get sorted out. Great photos!!!

    Jackie

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