My night with the Rocket Man (and other less important details....)

That was FUN!!!

Elton John, as seen from the stage in Tel Aviv

Elton John, 69 years old, still has it! He may have chickened out of using his upper range, or it may have betrayed him in his later years, but yes, he still has it. He can still rock! It was a great concert. He wore a blue sequined long dinner jacket, matching blue pants with sparkly stripes, and bright pink platform sneakers. Oh, and of course, sun glasses. Not the big plastic white, or red ones; no feathers or rhinestones, his glasses have mellowed over the years, but he's just as iconic as ever. Much of the concert was songs that I knew. Each piano introduction sparking immediate memories of the song coming. That was great. He has a lot of new stuff, too, and I am not familiar with that. His newer stuff is kinda bluesy, I loved it. When it came time for the encore, I yelled from the bandstand where we were sitting "Crocodile Rock!" I didn't want the evening to end till I heard that. He must have heard me... because he played it! I immediately jumped up and started grooving to the song, and even Robert joined me. It made my night!

Certainly puts a new feel to the holiday of Lag B'omer for me.

HUGE loving thank-yous go out to

Adina and Elli, Ari and Chaim, Bracha and Macky, Dov V, Emily and Andy, Gabi and Haggai, Idit and Gordon, Jodie and Ken, Judy and Joe, Linda and Cliff, Lisa and Moshe, Marne R, Miriam and Jeff , Peter Kashin, Rivka and Steven, Ruth and Moshe, Sharon and Asher, Sharon and Neil, Shlomit and David, Tom Kashin, Michael and Lisa, Hedva and Jonathan.

"I never had me a better time, and I guess I never will!" (...from Crocodile Rock)

And I learned something new...

...that blinking/flashing lights can trigger a migraine for me. This was never true until a few months ago, when my migraines were getting really bad. I had been suspicious that driving at night gave me headaches, but I had so many headaches all the time, I couldn't tell what was a trigger and what was a result of already having a headache. At the concert, just for one song (thankfully) they had flashing lights, and from that point on I had to wear my sun glasses. (OK, actually, honestly, I just wanted to be like Elton John and wear my sun glasses. This is all just a clever story designed to justify my bizarre new habit of wearing sun glasses occasionally inside and/or at night. )

Since I had seen my neurologist the same day as the concert, I was freshly equipped with the assurance that taking Excedrin (or any OTC analgesics), up to twice a week is OK. I showed him my log of headaches since the hospitalization, and we counted eight days (in three weeks) which were headache-free. Not a terrific track record, and in his Israeli accented words, he threw in the phrase "you're not yet out of da woods".

So, when I felt *it* coming on at the concert, I took Excedrin. I had brought it with me just in case. I see that stuff as if it's poison, though... like if you have had food poisoning for many months, and you get better, then someone makes you that same food that made you sick, but beautiful and freshly prepared, you just can't eat it, no matter what. It brings bad associations. But, I took it because Dr. Ezra (neurologist) said it'd be fine.

It didn't help anyway. :(
By the bus ride back I had a strong headache, and by the time I crawled into bed, a migraine. It's interesting to have a migraine *and* Elton John songs going on simultaneously in your head. Medicated myself to sleep. I tried to get up in the morning; we were supposed to go back to Tel Aviv to renew the children's American passports for our upcoming trip (July). To do that, you have to bring both parents and all the kids who need passports. I woke up still with the migraine- that is the worst. There was no way I was going anywhere. Robert took the chance and went anyway. It is not so simple for all our kids to be in the same place at the same time during the week (on Shabbat it happens a lot, but can't get any business done on Shabbat, of course). So, Robert took the four kids to the Embassy. (I have to go to Tel Aviv myself on Tuesday just to sign the forms so they can process the kids' passports. Bleh.)

So after they left, I thought I'd sleep till noon, headache would pass, and I'd be Tinkerbell making everything perfect and sparkly for a surprise when they came home. I thought I'd have Shabbat food prepared, house cleaned, table set up for Shabbat when they returned.
Ummmmm....

~~~~~~~NOT!~~~~~~~~

Slept all day. I don't even know when they came home, I was sleeping. I never even got out of bed. Didn't eat, drink, nothing.
Again, Robert was able to rise to the occasion, made some quick chicken and green beans, threw together a soup, and planned on using left-overs. Remember, he had only returned from the US two days beforehand. Again... my hero. Thank Gd.

Since then, I've had a low hum of a headache. It's almost always there, kinda hiding out, but peeking. I am not taking anything for it, I am honestly at a loss for what to take. I could try Advil. But that is bad for kidneys. But my kidney tests came out mostly normal(ish). Dr. Ezra said I could take anything I wanted, but not more than twice a week, and not two days in a row. Maybe regular Tylenol. Or maybe nothing, I am getting used to the low hum of the headache. (but it makes me irritable) I hate taking more stuff. I know my body doesn't want it.

Don't yell at me, but I forgot to ask him about doing an MRI. He didn't mention it, and I forgot to ask. There were so many things to deal with, I just forgot. It's usually impossible to see him, unless I again perch myself outside his door on Wed at a certain time, so I guess I'll have to do that again. My next appointment isn't until August. I feel I need the peace of mind to know that there is nothing structurally visibly wrong with my brain to cause these headaches. Can't believe I forgot.

He wants to raise two of my medicines. I wasn't happy about that. I thought we were going toward getting off all the meds except the Cannabis. He said that's not his goal. His goal is for me to be functioning at a level that I can start playing horn again. I was surprised to hear that. I mean, when I met him over two years ago, I told him about myself, but haven't talked about that ever since. He had it in his mind the whole time. He wants to raise my nerve pain medicine (which I have taken for 8 years already for the nerve pain in my leg from NF), as well as another one which also works on nerve pain. I reminded him that we tried that already and it didn't work, and he answered with saying that I was on opiates at that time (Fentanyl), my body will react differently now to it. OK. I guess. He says that medicine that works on nerve pain will help my headaches. Makes sense, it's all the nervous system, but I just have a dream to be medication free. I don't think that's going to happen. When I asked him about the sleeping pill issue, he said to be patient. It's not time for that.

Sometimes we have to amend our dreams. If I can be headache free, and free from daily pain, I will be a better "me". I would like very much to start playing again. Life is short.

I've decided to splurge on a series of 10 massages with my favorite masseuse. Doctor's orders.
First one is tomorrow. Can't wait.

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:

Headache.

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.

Withdrawal: MOH (medication-overuse headache)

I was sure I could handle the withdrawal without assistance. I did it with the Fentanyl, how much harder could this be?

Yah, well, it is harder. It's "cold turkey" instead of slowly tapering. That makes a big difference.

Just spent three days in the hospital neurology unit dealing with my horrendous withdrawal headaches.

The second day of no meds was on Shabbat (this past Saturday).
By Saturday night, my pain level was way past 10. It had gotten to 10 at about 4PM that day.
My neurologist said that the hospital could give me an IV "cocktail" to help the withdrawal and the pain if I needed it.

We went into the hospital at 8:30pm.

In the ER, they didn't know what to do for me; I was supposed to be going off over-the-counter medicines, and I was there in terrible pain, they didn't know what they could give me to help. They actually took initiative to call my neurologist at his home, at 10:45 at night.  Dr. Ezra (my neurologist) answered. That is also not to be taken for granted. He told them about me, and what to give me.

I got the "cocktail" IV only at about 11:30. I was in so much pain all I could do was lie in the hospital bed in fetal position and groan. I could barely see straight- my eyes were very effected with this withdrawal. It was hell.

So I was hospitalized at the advice from my neurologist. I couldn't do it alone, afterall.
Sometimes Hashem reminds us that there are things we just cannot do alone. We were not put in this world in a vaccuum; that, part of Tikun Olam (repairing the world) is realizing that people are here to connect and help other people. Ultimately this leads us to strengthen our connection with Gd.

At the hospital they gave me some steroids for the pain and a muscle relaxer medicine. It helped ease the pain a bit, but not a tremendous amount. For the most part I had to just slog through it, praying for Hashem to release me from the pain in my head.

My neurologist is really a gem. I have said it before, and it is only more and more true each time I see him. The morning after my intake, he came to my bed to visit and see how things are going. I said its been hard, but I'm plowing through. He asked me if I am doing any relaxation techniques, the kind I learned from his course on meditation for chronic pain sufferers. I told him I wasn't. At that moment, during busy morning rounds, he invited me to come into his office to do a relaxation session. Right then and there. I got comfortable in his big lounge chair with the leg rest and reclining back. He took my phone and recorded a whole meditation for pain session (in his voice). It took about 15 minutes. He asked me if I have less pain, and I said I didn't, but I am definitely more relaxed. He said to listen to it on "loop" (repeating over and over) to try to help overcome the pain.

Then he carried on with his rounds. Amazing.

He also had a special "protection" assigned to me... the nurses never woke me up to take blood pressure or temperature. After all, I am not sick, I just needed some back-up for a withdrawal. I never got woken up (by nurses or doctors) the whole time I was there. That, I think, is a miracle in and of itself.

I came home on day 5 of withdrawal. The hard part was over, but the headaches still hung around.

Today, the end of day 7, when Dr. Ezra said withdrawal would be finished with, I still have a dull, consistent hum of a headache. I went out with my family to celebrate Israel's 68th birthday, though, thankfully I was well enough to go to that-- our yearly cook-out with friends from all over the country.

My eyes are really effected by this withdrawal. The first two days I had a white light behind my eyes, no matter how dark I made them. I was also seeing strange visions, icons sort of, inside my closed eyes, for days. It was so strange. Now I still have some of that white light effect (kind of nerve-wracking, in a way) when my eyes are closed, and they are still over-sensitive to light. I am looking forward to a headache-free days (I have had one, yesterday), and taking off my sunglasses.

selfie from my hospital bed
Ya'akov calls it "gangsta momma"

What is unknown is what to expect about the migraines which triggered this whole cycle to begin with. I am supposed to start charting them, dates, times, rating of pain on a scale of 1-10. My current instructions are that I can take Excedrin/Advil if I feel a headache coming on (after this initial withdrawal period), but not more than once a day. Also, up to twice a week is OK, but not two days in a row. I see my neurologist again in a few weeks to follow-up, and see what comes next in evaluating the migraines. Probably an MRI first. I haven't ever had scans to evaluate the migraines.

This is all so "one-day-at-a-time".

Did I tell you my right hip (recent surgery, 6 months ago) started acting up also? It hurts these days. It had stopped hurting for like 4 months. I thought I was healed, but now I realize that all those analgesics I was taking were also helping cover that pain. Hopefully when I get back to the gym, and start working out slowly, it will be better. I hope.

As they say in Israel, "פרה פרה" (para-para, literally "cow-cow", like, we'll milk one cow at a time, no matter how many there are. It's a great expression.) Actually Dr. Ezra used an expression taken from Arabic- "שואי שואי" (shway shway) meaning "little-by-little".

I'm getting there.

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.)