Thursday, February 19, 2015

Intense sleep-deprivation (and a surgical consult coming up, to boot.) Long post, make a cuppa tea.

There have been some very good days, and some awful ones. Mostly, I am very, very tired. I haven't gone down another dose in over two weeks because the last time I did it was so difficult, I am honestly scared to do it again. I will, but I don't want to. I really wish I could hide away from life the first week of a dose lowering. But, life needs me in it, no matter what other personal work I am doing in the background. The plan is to do the next dose-lowering on Sunday. I just want to be off this Fentanyl already. On the one hand, going slow is necessary, and I am doing that, and on the other hand, I want to be free from this stuff.

The nights are the worst. I battle insomnia and restless leg syndrome, and they both are enough to make someone honestly go crazy. Both effects of the weaning. I don't get much sleep at night, and am sill trying to get up in the mornings before the entire morning goes by. I dread nights. They go like this: I am extremely exhausted, have taken sleep medicine, and I lay awake for hours. Take more sleep medicine, and if I'm lucky, I doze off. I don't automatically go for the two doses of sleep medicine because I don't want to change one medicinal dependence for another.

If I have restless leg. I don't know how to explain it, it makes me so crazy I honestly want to just scream... jumping out the window has come to mind. Not to kill myself, just to have a distraction from the restless leg- that is how annoying it is. I can be almost drifting off to sleep, then bleep-bleep-bleep-bounce-bubble-ants crawling up my nerves.... my leg starts jumping around on it's own. Then I'm up and searching frantically for a solution, where there isn't one (I try Xanax, sometimes it helps, sometimes a leg massage helps, but nothing *really* takes it away consistently). Robert has also been looking for sulotions, but I don't want to introduce any new meds now. I've even tried sleeping in my very tight pressure stockings I wear for flights, and it didn't help.

Waiting for the approval for the Cannabis. That will change the whole structure of my night. I will soon check with my neurologist to find out if he can give me an updated time table on that. I wish I didn't need it- I want a drug-free life. I want it more than anything. But, I need decent night's sleep, and having been through all I've been through, it seems, for now, my body does not know how to calm down enough to do that. Oh, I should listen to the meditations I've done in my course- I forgot about those!

It's a far cry from a year ago when I said I couldn't not sleep. I would need 12-14 hours a day. We all remember that. yes? From one extreme to another. All because of the Fentanyl.

The woman who does my lymphatic draining every week (Dianna with a beautiful Argentinian-accented Hebrew) told me to drink two cups of soda water a day and it'll go away. Sounds like a "bubameisa" (Yiddish for "grandma's tale") to me, but I'm willing to give it a go.

I'm So Tired. 

I'm not in much pain, though, interestingly! The one thing I was most worried about hasn't happened.
I'm having lots of good time with the kids, making healthy foods, being with them all afternoons. This is the first year I have no helper at all- no nanny, babysitter, no help with the driving, nothing. The kids are old enough not to have a babysitter anymore, thankfully. I've just been very "present" with them these days. There is still way too much driving on my plate, but I am handling it.

I can't even write more I am so tired. Gonna close my eyes....

(Next day now.... Thursday.)

Another horrible night. Slept from about 4 [I think] until 11. It feels awful, and depressing.
The problem is that I am so profoundly exhausted that I can't even read when I have insomnia, I just lay in bed, with my [pink, silky-soft] eye shades on, half conscious. I wish I could be productive during that time, but no chance. My mind is mush.

Life is very, very hard when sleeping is thrown off. I have learned not to underestimate that. The effects seep into every aspect of life. Every Aspect. Been getting many more headaches, too. :(

Next week I am going for a consult with a surgeon.
I don't know if you remember, but last summer when we were on our vacation up north, something in my right groin area started hurting with stabbing pains. I thought I had another hernia- couldn't imagine what else it could have been. My doctor ordered an ultrasound, and all that was seen was enlarged lymph nodes (it was a few weeks after the cellulitis hospitalization from last summer), which is when I started to go for lymphatic draining. Well, that pain still comes and goes. A few weeks ago, though, I woke up with it stabbing again, acute, like the first time I felt it. Doubled over in pain. I happened to have an appointment for lymph draining the same day, so Dianna (lymph lady) tried to work on it. She could barely touch it because it made me jump with pain. Turns out that she is sure it is not lymph-related. It is some part of anatomy which seems inflamed (sometimes I feel it radiating out, as well). I went back to my doctor (GP) and she checked it again, and agreed that it's not lymph nodes. It's some sort of inflamed ligament or something. She said she wants a CT scan of it, but she'd like a surgeon to look at it first, and have the surgeon order the CT. She said that if she knew what to suspect, she'd order the CT. But, since she (my GP) has no idea, she wanted a surgeon to have a look. We're talking about the right side here, the "unaffected" side (which actually carries many effects, but was never operated on).

So that is the 25th of Feb. I don't recognise the name of the surgeon, and it isn't at the hospital, rather at a clinic, which is good. I'll let ya know. Another weird, inflamed, unknown thing hurting me. Boohoo. I tried to ignore it for months, I always fear over-reacting about every little thing, but it is giving me stabbing pains again, so my body is telling me not to ignore it.

(This, because I don't have enough on my plate, Hashem? Really?)

OK, I gotta rest- I have a migraine coming on, which I pray will go away with the medicine I took, because we are going out tonight- all six of us!!! We are going to an English theater performance of the oldie-but-goodie "Fiddler on the Roof"! We splurged on six tickets so all the kids could see it. We had to explain the whole story line, the kids having never heard of it. Live English theater is a rarity here! Looking forward- but please, Lord, take away this migraine.


  1. When I can't sleep, I think to myself that I am really resting and that's OK. Maybe I am just rationalizing, but it helps while I just lay there.
    Have you tried exercising the leg while you lay there? Improving the circulation? I will look at restless leg syndrome after I finish.
    Have you heard of Meir Schneider?
    Love, Joan
    p.s. Josie is a joy. And doing nicely. Likes to eat, but I put her on a diet.

    Joan Elizabeth Avigur

    1. yes, I agree that resting is better than nothing. I say the same thing to myself, but even with that, there is no substitute for sleep.
      No, who is Mair Schneider?
      Glad to hear Emma's puppy is happy! Interesting about the eating, beecause Emma is not such an eater. Half a bowl a day, usually.
      Thanks for your input! Be well!