Monday, April 6, 2015

Neurology at it's finest, Passover 2015

Shortly after I wrote last, I put myself in my neurologist's office. I didn't have an appointment, and couldn't get one, but I was desperate. I had remembered from when I was in the meditation/relaxation course that he was always in his office around 3:00pm Wednesday's, which was when the meetings were. So, I decided to go his office at 3pm on Wed and take a chance that his schedule hadn't changed. I walked down the corridor of Soroka's neurology ward, with my head spinning, feeling like it was shifting in my skull, toward the end... where Dr. Ezra's office is.  His  door was wide open... I peeked around the door frame, and there was his calming face, sitting behind his desk, with *nobody* else with him. That almost never happens. He looked up, smiled a big smile at me, and welcomed me in. What a relief, even before I even sat down.
I asked him if I could steal a few minutes. He said "of course, come in". That was only the first of an entire half hour of positive doctoring he freely gave me. Remember, this is socialized medicine, he doesn't get paid for that.

Dr.: "How are things going"?
S: "it's hard. It's been very hard lately." [tears start pooling in my eyes]
Dr.: "have you been able to practice the relaxation techniques from the group sessions?"
S: Not so much. Only if I find myself in a lot of pain and trying to fall asleep.
Dr.: OK, well, let's do that.
(Sarah, not sure what is going down here....)
(Dr. gets up, turns down lights, invites me to go sit in the large, leather recliner in the corner of his office)
(Sarah, settling into the chair, starts to feel a wave of gratitude while pulling up the handle at the side of the chair, reclining and stretching legs out)
Dr.: close your eyes, relax, and listen to all the sounds going on. Tune into the now: the air conditioner, the voices outside my office, the sounds outside the window.
Let yourself relax; your facial muscles, your forehead, your cheek muscles, your neck muscles, all relaxing.
(Dr. continues with a guided meditation to relax body and spirit. 15 minutes pass by before He counts "5-4-3-2... you are coming back to full wakefulness... 1")
I can't tell you how grateful that made me feel. Gratitude is a small word in comparison. Can you begin to understand, after so many experiences with insensitive and arrogant doctors, how having this experience- without even a formal appointment- made me feel? Like warm cascades of honey flowing inside me.

Dr.: Come sit back on this side of the room and I'll go back to my desk.
"So tell me what's going on."
S: I have been able to wean off Fentanyl until 12mmg in five months.
Dr.: wow, that's significant. Realize that you have accomplished a lot.
"How is it going with the Cannabis?"
S: Well, yeah, I want to talk about that. I brought it here- take a look [showing bottle of drops]. I took
it in the evenings for about two weeks. Only in the evenings, because it makes me spacey and             detached from my words. It does stop the restless leg syndrome, though, and that helps me sleep,     so I took it for a while.
What was happening, though, was that I was getting a headache every day, all day, so I stopped. [I began crying.] I told him that everything has been so confusing, and I've been doing this without        enough medical follow-up.
Dr.: Should I open up your file on the computer and record a formal doctor visit, or is this a                  conversation?
S: I dunno.

(The doctor then called his secretary and asked her to open my file and record a formal visit.)(Remember, no appointment. He didn't *have* to do any of this. Warm honey.)

Dr.: How are the pain levels?
S: I have had significantly more pain, but I can handle that a lot better than the dizziness; that is the     worst. For weeks now I haven't seen the world straight, and all I want to do is lie down. Then at           night I don't sleep. No matter how tired I am, insomnia hits and it is brutal. Every single night.
Dr.: what sort of dizziness? Spinning? Is it when you lie down that the room is spinning? Or is it like  side-to-side shifting?
S: Side-to-side shifting, all the time. It never lets up.
Dr.: How are  you doing the weaning? At what rate?
S: 6mmg every two weeks or so.
Dr.: The problem with that is that the lower you get in dosage, the more, percentage-wise, is being       taken off. Taking 6mmg from 100mmg is very different than taking 6mmg from 18, which you
  just did a little while ago, right?
S: Yes, almost two weeks ago, and that is when the awful dizziness got to this unbearable point.
Dr.: Yes. Of course.
Dr.: Ideally, the Cannabis should help you with these side effects.
 Maybe you should try diluting it in water and drink that cup of water in the evening?
S: I didn't know you could do that. I mean, it makes sense, but that's what I mean about having no    medical support person to consult. That is why I came here today. I just am at my breaking point.
Dr.: I am thinking that maybe I should start you on a low dose of "Lyrica". Have you ever taken       Lyrica?
S: I have taken it, many years ago. It was one of the first medicines I took. It would work, then stop working, and Dr. Z would have me raise the dosage. It went like that until I got to a pretty high           dosage. Then, my GP, as well as Dr. Z, decided that being on such a high dose of Lyrica can be           contraindicated with me already being on [another one of my medicines called] Lamictal. So, I           weaned off the Lyrica and switched to another medicine for nerve pain. I didn't have any particular     side effects.
Dr.: OK, so I think it's a good idea to start it again, only for a temporary time period, on a low dose. It will help with pain in general, and help the weaning, and hopefully help you sleep.
S: OK. I was hoping not to start more meds, but I understand the logic.
Dr.: That, along with the diluted Cannabis should get your sleep straightened out. Hopefully the     dizziness will go away, too. Stay on this dose of Fentanyl. Nobody is chasing you to go off of it           fast. You can stay this way for a month or so, then try again, a very small reduction of the dose.
S: Agreed.
Dr.: Come see me in three weeks.
S: I can never get an appointment with you, you're booked until November.
Dr.: I'll call my secretary and tell her to get you in.
S: Thank you. Thank you, thank you, thank you. If it was appropriate to hug him, I would have. I'm sure he understood that. My eyes said it as the meeting was ending.

Since then I have been doing the meditation/relaxation more. It helps. Helps all the systems calm the heck down.
I am pleased to announce that Today, Sunday the 5th of April, 2015, is the first day that I had a perfect night's sleep (with pills at the beginning, but OK, the sleep continued on it's own all night), woke up looking forward to the day, had NO PAIN, and my head was screwed on straight- no dizziness at all. I cannot *remember* at all the last time I felt this way. I had normalcy return, if only for half the day.
We packed up the kids in the car and headed north today. We are spending the week of Passover away seeing family and friends. (spring vacation for the kids- all the vacation days in all the schools here are built around the Jewish holidays. This is the only place in the world that is that way. That's one thing I love about living here. On another, unrelated note, but related to loving living here: while traveling on the highway today, there was one of those electronic signs above the highway which is used for warnings about traffic and whatnot, but today it said "מועדים לשמחה" (translates to: "have a happy [intermediary] week of Passover!") Right there on the main highway. That is what is called "an Israel moment". That's when living here reminds us that we are home. OK, my "Israel is the best and only place for the Jews" comments are over.)

I was going to say that I did start getting the daily headache today, in the car, late afternoon, when it usually starts. I took Excedrin and it was staved off, thankfully. (Dr. Ezra said it'd be better not to take the Excedrin every day, but as long as I have these headaches, I don't see any other choice.)

I was less fortunate on the night of seder (first night of Passover). It was a lovely seder; inspiring, thought-povoking, interesting and tasty. I was going great until about 2am when I had a migraine descend upon me like a hail cloud. Boom. It was strong and wicked. I took some medicine my hostess gave me, but it wasn't strong enough. We got home from seder (which was at our friend's house) at about 3:30am. Everyone flopped to sleep except me. I wound up tossing and turning in the grips of an insane migraine until 5:30am when the Cannabis and another sleeping pill saved me. I slept much of the next day, and recovered.
Today, I can say that the headaches remain the hardest part of the withdrawal. I've been taking the Lyrica for only four days, and today was the first day of virtually no pain, until the headache moved in late in the afternoon. That's pretty good.

We're on vacation, and have fun things planned. I believe I'll be able to enjoy it all with my family, with Hashem's help. Not to underestimate the help from the neurologist. Not at all.
This is the doctor, if you will remember, who said to me that when he knows that I am back to playing horn again, he will know he has done his job. From his words to Gd's ears. I miss playing so much. I want to sink my teeth into beautiful symphonic literature. That day will come. Again, yes, with Hashem's help.

In the meantime, I'm taking life easier, staying on a low dose of Fentanyl until the time comes to reduce it again. I will get off of it. Just don't know when, and I don't have to know when, right? I've come a long way. I can do this. I will do this.
Happy Passover, Easter, and spring to everyone out here! And I humbly thank you all, again, for your undying support. How on earth can you put up with me for so damn long?

Coming up on the 8th year anniversary of NF. Seems so long ago, but the fact that I am still caught in the mire of "nuclear fallout" from it makes it seem, actually, not very long ago at all. In fact, I still don't have much distance between my soul (not to mention my body) and it. Not a day goes by without some sort of memory- either body memory or intellectual- passing through my head. Quite often more than once a day. That's OK. I can accept the way things are. There is a reason for everything. Each time these memories and thoughts come, a little more of me gets healed.

Good night.
And thank you, Dr. Ezra, for being the mentch that you are. You are a gem among doctors.

(My attempt at a sunset with a computer drawing program.
I know it looks like the artist is 2.)


  1. לשרה - מאוד ריגשת אותי. ב"ה שד"ר עזרא מושיט לך עזרה! מאחלת לך רפואה שלימה במהרה בימינו אמן - כי בא מועד!! מועדים לשמחה!

  2. How do we put up with you? We worry for you and wish you only good health!!! Interesting about the % of meds getting larger. I would never have thought of that. Have a great vacation with your family. Getting them all together starts to get harder and harder.

  3. I'm SO glad you took the initiative to see your doctor and to tell him you can't wait 6 months to see him. Enjoy the chag.

  4. What a wonderful doctor. A truly loving man. And I'm glad that things are starting to look up a bit, Sarah. You so deserve a break.

  5. Yay for that doctor! And the drawing doesn't look like a two year old. It just looks like a very stylized painting and I like it!

  6. Good for you! You recognized what you needed and did it. Continue your great progress.

  7. Be well and enjoy the Chag and I'll see you next week, bli neder.

  8. wishing you a complete refua, and very happy that maybe the yeshua is here and you will have healthy days and nights. brachot for the doctor!! chag samaech!! rochel.

  9. Ok. Second try. I am so happy to hear you are feeling well. Enjoy every minute of this vacation! Family is everything. Here's a quote from a booklet a friend gave me for caregivers: "The ebb and flow of changes caused by illness affect not only the people who are sick, but also the lives of everyone entrusted to their care." Your ups are our ups. Love you! Miriam

    1. Miriam, that was a beautiful thing to say. Thank you so much, my friend!