Sunday, May 17, 2015

Jerusalem Day 2015. Music, medicine, and marijuana

Well, that is a nice (half) tikun!

(Tikun is a sort of healing the world, making something better than it was before you came into the world. It is an integral part of Jewish life, and I might even say every one's life.)

Which tikun am I referring to? Well, I wanted to practice horn again today. I took it out, and realized there was nowhere suitable to sit. I used to do most of my practicing in our bomb shelter room- I had carpets up on the walls and such. Then I converted the shelter into my "doula room", where I taught birth preparation classes to couples. For now, I am playing up in my bedroom. But, I couldn't find an appropriate chair to sit in! Which one turns out to be perfect? The plastic folding chair which I use to sit on when I shower. Since I got NF, I am not so steady on my feet in the shower, a combination of the hot water making me a bit light-headed, and having pain, makes me very nervous in the shower. I have used a plastic chair ever since. That same chair is exactly the right size and is comfortable for practicing horn! Interesting... it's a "half" tikun because I do still use it in the shower, but there is a "healthier" use for it now, too! If it's dry, that is....
I am playing long, steady pitches. Lots of them, with my tuning machine so I can retrain accurately. I realized today while playing that this is a real opportunity for me to fix some of the consistent errors I had in my playing before. I never really had the time to sit and practice long tones. Not since college. Now I can do it, and hopefully gain precision in the area I was weak before. It's a way to build up the muscles again, and gain accuracy. It feels great to be with my horn again. When I play, it feels like a long-lost appendage returned to my body.

Gapey is beginning to hurt a bit, though. I now remember from when I played the times I did after NF that it put a lot of pressure on Gapey. When you play a wind instrument, the pressure to push out the air comes from the diaphragm, and pushes against stomach wall muscle. Gapey covers a large amount of the stomach wall, and the muscle was damaged with the NF. I had forgotten that it hurt when I played. Hmmmmmm.... don't know if anything can be done about that.

I did get to see Azriel's class play on Friday. It was so nice! He had lines in the play iteself (about reuniting Jerusalem from Jordan during the six-day war), then after the play they made a special announcement that he would play guitar. He played in front of the whole elementary school "Jerusalem of Gold" on his guitar. He was cool as a cucumber. I was so proud of him! I didn't play solo in front of anyone until I was in 6th grade. He's in 3rd, and has only been playing guitar for 4 months! Next time I have to teach him to take a bow. :)

Azriel in the middle, his principal on the right, his teacher standing
in the middle (behind him), and the music teacher on the left.
Him playing... a friend holding the microphone
by the strings, and his teacher holding his music.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Last night I started the weaning process again. I have two doses to go until I am off the Fentanyl. It could be more than two doses, I'll have to see how this goes. I cut out half last night. I have a patch of 12, and I cut it in half. It is a big drop (50%), so I'm going to have to see how it goes. If it is really hard, I'll make the next six go slower.

Why did I start up the weaning again? I made the decision after this past Shabbat (Friday and yesterday) dealing with a lot of pain in the right joint where there is the impingement and torn labrum. I realized that I am going to have to get that fixed at some point. It is very painful, and it's not going away. So, I want to be off all the Fentanyl so I can do the surgery; to go under general anesthesia without having Fentanyl in my system. The main reason my orthopedist decided he will not operate on me is because I have too many drugs in me, and I am a high risk. I don't know which orthopedist will do the surgery, I have to get in touch with our "medical rav" to get a recommendation. Last I heard, though, my orthopedist is the best one around for this specific type of surgery, and he's operated on me twice (arthroscopic hip surgery). I'll be interested to see if our medical rav has someone else to recommend, or if I'll go back to the other one and hope he will operate on me in better health. I am lucky he didn't operate on me last year when it was scheduled.... my body wouldn't have been able to heal well with everything else that was going on.

I have to schedule my MRI for next month. After that, we will know if there is PVNS in that hip or not, and then I can make a proper decision about how to proceed. Did I tell you that the results of the CT were fine? It's good, of course- it rules out (in most probability) hernia, and/or cancer. It doesn't rule out PVNS, however. That can only be seen with an MRI. So after my next MRI I'll know what I need. I gotta schedule that....

I am doing a sleep clinic at the end of this week. My GP ordered it long ago, when the restless leg syndrome started, because I couldn't sleep. That was all together with the weaning, too, so that was also giving me insomnia. Now I am weaning again, and very well may have a hard sleeping week. I talked with the lady at the clinic about that, and she said that they can analyze my sleep as long as I have about three hours deep sleep there. She said the medicines I take have no effect on the clinic evaluation. How I sleep is how I sleep. The question is, I pretty much know that nothing can be done for RLS, so how would an evaluation help? Well, what I do know is that the cannabis drops can help, but I wake up with a headache when I take them, so that isn't an option. I did get in touch with a person today who specializes in medicinal marijuana (thnx Jane), so I hope that through him I'll get a direction to figure out which one is good for me.

Three steps forward, two steps back.
Last week's steps forward were great, though! I still have that one step footage... it's not lost, and never will be. We'll rebuild, one step at a time.

(PS- today, Jerusalem day, in 2007, is when I had my skin graft surgery, two weeks after I had the NF. The description of that morning is here. What happened two days after the skin graft surgery left one of the deepest traumas in me from that time period to date. Here is a very brief descripion that Robert wrote at the time. If I had written it, it'd be much more traumatic. The anniversaries this year seem to be going by with less bravado than previous years. I am grateful for that.)

Friday, May 15, 2015

Well, the horn works! ...but I broke a bit.

OK, well, as may have been predictable, I overdid it. It was an awesome few days, but- lest we forget- my nights are still really hard because of restless leg. I basically didn't sleep for two nights (the first night was insane RLS and a migraine, second night I ran out of sleeping pills). Somehow I was able to be really productive and energetic during the days, so I went for it.

Today (Thursday), however, I landed in bed. BAD pain in my hip, stomach issues, headache, and dizziness all day. I tried to get up for a bit, but my body was having nothing of it. Slept lightly most of the day. Still am feeling kinda crappy. I do hope, however, to get to Azriel's school tomorrow morning to see the play he is preforming in for "Jerusalem day" ("יום ירושלים"- the day that Jerusalem was recaptured from Jordanian control in the six-day war). He is also going to play guitar- solo!- in the song "Jerusalem of Gold" ("ירושלים של זהב") for the school. Did I tell you he has been taking guitar lessons for about four months now? His teacher says he is picking it up quickly and has talent. :)
I really hope to get there. Dare I say I am going to push myself to get there?

Speaking of pushing myself...

Yesterday, before crashing into bed, I spent two hours working on my stuck horn valves. Well, lots of the first hour was having it soak (without any of it's slides) in a warm bathtub with a few drops of liquid dish soap in each slide to hopefully help break up the corrosion and grease that was gunking up the valves.

It was quite a lot of work after it had it's bath, but my loud cheer of "YAY!" could be heard throughout the house when the last one got unstuck.

Then I [attempted] to play Mozart. Then lots of low, long tones, just to meditate a bit on the horn, and feel my muscles slowly wake-up after their long hibernation.

Then dizziness overwhelmed me, and I flopped into bed as if a crane had dropped me. The two nights of RLS and migraines caught up with me.

I still have problems to solve. My hip still needs a surgical fix, and the pain is quite strong at times. I still hope, soon (the time will become apparent to me, I am sure) to finish off the last few doses of the Fentalyl. I also need to find the right species of pot that can solve my RLS and help me sleep. Then the next project is to get off sleeping pills.

Gapey aggravates me on a regular basis, and the [painful] lymph edema is here to stay, as is the pressure garment. I still need to get the lymph draining frequently.

But, with Gd's help (and a special healer in my life), these things I will overcome.
Today was bleak, but it is within a hopeful framework.

So much has happened, and there is still so much to deal with. All I know is that I am on the right track. What is permanent may never go away. Life is at a new normal- prototype 3. But this new normal is still quite a distance from the desired goals. All I know is that I will keep desiring these goals, and work toward them whenever my body lets me.

Sound OK?

Good night. I'm blown. I need a leg massage- the nerves and muscle spasms are happening. I need the proper form of cannabis to help with that. 

In a conversation with my Rav of many years ago, Rabbi Aharon Batt (ztz'l) when I said to him "it's gonna be good" (In Hebrew), he responded with "it's gonna be better". We are headed for better. I miss you, Rav Aharon. Ayelet, you are always in our hearts. :)

Tuesday, May 12, 2015

A few of my favorite things... a true landmark day.

My body is back 'on-line'. Things are going much better again! So glad I went off Lyrica. I am back to feeling great again!!!!!

Here are a few recent pictures of the children, me and Robert, and a few special surprises at the end....

Dovie, 16 years old
Me, Ya'akov (15) and Robert, a few months ago [a bit blurry]

Shifra, 12... Smile!
Shifra, 12, attitude ("get real, ima")

And now for the big surprise!!! 

                                I said I am feeling great, right?

Guess what I did today?!?!

                         First this....

opened my horn for the first time in over five years

                        T h e n .............................................................. 

T H I S !

Not so easy to take a "selfie" while poised to play horn.
I couldn't get too far with playing because a few valves are stuck.
I have to go to work on un-sticking them. It's a project.
No public sound bytes until I can play at least a bit better than
the sounds of, let's say, a dying camel.


And if that wasn't enough, then I went to THIS..........................

An afternoon chamber music concert at Ben Gurion University.
Shubert and Brahms... ahhhhhh.....

And to top it all off, me and my 9-year-old, Azriel, did THIS together!!!!!!!!!!!!!!!!!

We went bike riding together! First time EVER.
I don't have a bike, but I raised the seat on Shifra's bike and made do.
We went all around the neighborhood and parks!
Yes, I'm sore, but we were so happy.
(I hope I can walk straight tomorrow.....)
One very happy mommy & son duo.
Today was MY mother's day.

Friday, May 8, 2015

De-bugging prototype 3

Sarah, prototype 3, can never return to prototype 2, but the debugging process can be quite a setback.

OK, no energy or interest in writing a third person narrative today.

Remember when my neurologist suggested I go on "Lyrica" to help ease the Fentanyl withdrawal? Well, I did that. A very low dose, only once a day, even though the prescription was for twice a day. I didn't forget the digestive problems I had last time I was on Lyrica, but I reasoned that then, it was a much higher dose, (I maxed out on dosage), and it was combined with a high dose of Fentanyl. Or was that the Methadone time period? I gotta go back and look it up. The point is, I thought things would be OK this time, with a low dose, and low dose Fentanyl.


My digestive tract was (and still is) a disaster. Nothing's working well. (This even with the changes in diet). I decided, on my own with no doctor's visits or advice, to go off the Lyrica. I knew that was causing it. I have experience. The day before the holiday of Lag B'omer- this past Tuesday night- was the first time I just dropped the pill out of my routine. It was a low dose anyway, so no weaning necessary. Sleepless night. SLEEPLESS. My body does *not* do well with stopping medicines. Going on them is just fine, but going off? My body says "you're gonna pay for this, girl."

As most of you know, the holiday of lag B'omer is an anniversary for me... the day I woke up out of the coma. This year, it was OK. I didn't feel a huge need to talk about it, and going off the Lyrica and the sleepless night trumped the anniversary for me emotionally.

The next night, the night of Lag B'omer, we had a very nice barbecue and bonfire in celebration of the holiday. That was Wednesday night. That was followed by another sleepless night. Restless leg is back, I guess the Lyrica had been helping that. Last night, Thursday night, desperate, I don't know if I took three or four sleeping pills- honestly. Restless leg was making me INSANE. I didn't take the pills all at once, mind you- I do have my wits about me. I just kept trying desperately to fall asleep. My system didn't want anything to do with being forced to sleep. I was awakeawakeawake. Till about 5. Today is a total loss.

I WILL get through this. The Lyrica must stay out of my system. The main side effect for me is completely unmanageable. I dread having to start up the Fentanyl weaning again to get off those last two doses. The right time will present itself to me.

Mainly what I realized is that I should try to be proactive in getting the right form of Cannabis. The one I have is clearly not good for me. But I need that help with the restless leg- that problem is also unmanageable. Nothing takes it away, and I cannot sleep as long as my leg is twitching. I think what I have to do is change my provider- there are a few medical Cannabis providers in the country. I need to get in touch with a specialist (Jane- I haven't yet gotten in touch with your suggestion person yet- I was thinking of letting the whole issue drop, but now am changing my mind) and get the type of Cannabis that is good for me. The one I have effects my brain too strongly.

It may seem like tweaking, but, as we know, I am not a computer program. (L.D.- I am reminded of "Sara.h" :] ). Each tweak throws me for a loop, and usually costs a few (if I'm lucky, only a few) precious nights of sleep. And when a night is lost, the day is lost, too. It's not good.

May this Shabbat spread it's healing light and soul over all of the ill and hurting of Am Yisrael, and over the people of the world (especially in India)!

Shabbat Shalom.

Pictures from lag B'omer:

My face wasn't really on fire.... :)
me & my little guy, Azriel

Azriel enjoying the rare chance to be a big brother to a friend's child

Dov & his friends enjoying the bonfire
(Dov is the third from front, wearing the dark tee shirt with the blue lettering)

Sunday, May 3, 2015

Turning over a new leaf

Sarah, prototype A was before NF.
She was a powerhouse. Her power source, however, burned out unexpectedly, and it crashed. The team then went to work on launching Sarah, prototype B. It took lots of time, lots of technicians, lots of false starts, debugging, and sensitivity. Many specialists were brought in to consult on this project. Finally, after some immeasurable period of time, prototype B was created. I wouldn't exactly say "launched", because that prototype kind of emerged instead of launched. Here is the day it sprouted it's tiny sprout into existence: April 11th, 2011. It grew to a healthier sprout thereafter, but the steamroller that Sarah kept trying to stay ahead of did roll over it a few times. It needed speed, more nutrients, more vitality, and it needed an earlier start to the day so it can stay far ahead of the steamroller, which is how it viewed what we call life.

After many years of being back at the blackboard, so to speak, Sarah, prototype B made a conscious attempt to reboot. She went to a naturapath, who many reliable people told her would be able to help her bust through and emerge from the spout to a stronger, more nourished plant.

Her hopes were dashed with the first attempt because the naturapath didn't come to the meeting. That day she was more depleted, but the ever-present steamroller was not close to catching up, thankfully. She had more time. Hopes renewed, she traveled the distance again to see the naturapath, energy bank temporarily restored, even without proper nutrition and care.

The naturapath rejected the entire premise of the plan! He told her, in no uncertain terms, that prototype 2 has too many bugs, and he is no miracle worker. He called her a "victim", the exact word that slows her down and allows the steam-roller to catch up. That word, to this unbalanced sprout called prototype 2, equals malnutrition. The naturapath dashed her spirits, and she even cried after the meeting, spilling precious water supplies from the source of her being.

Spirits dashed, drooping with sleepiness, and malnourished, Sarah prototype 2 went to hibernate again. The rains (all the little prototypes called kids) came, so it was enough to sustain her. But sustenance from the outside is more temporary than inner sustenance. We know this from vast experimentation over many years, really since prototype 1 crashed.

One very sunny and beautiful day, after all the rains had passed, she again garnered her strength and decided to go another distance. Not as far as the first distance, but the difference here is that since she cut way down on the use of pesticides and chemicals, she was less sleepy and more able to drive her own car to this special place, to this special technician... a Healer, and a dear friend, who she has known for many years, friends from the old days as prototype 1.

The last time Sarah saw this healer/friend was two years ago. She had stopped going to her because of those pesticides and chemicals; they made her dangerously sleepy to drive long distances. Now, with the new energy granted from cutting down on the chemicals, Sarah was happy to resume healing sessions with this comforting, soothing, gentle, loving woman.

There was a new element to these sessions, though, that Sarah didn't expect, and didn't know what to make of. Her friend, Miriam Maslin, had new training and new techniques for healing. It wasn't like it used to be. Sarah, of course, was resistant. She had had enough of new things; she wanted only the simple, wholesome, enveloping energy that her friend always had on hand. But the friend was quite sure that this new technique was the way to help Sarah flourish.

So, Sarah, being the basically trusting and open sprig that she is, agreed to be analyzed by this strange machine Miriam Maslin introduced her to, called "Bio-tensor". (there isn't a Wikipedia article for that, even!)

The machine went about analyzing her physical structure, damages, and shortages of chlorophyll and other enzymes. Liver- weak. Needs enzymes. Kidneys/spleen/skin/hair- in desperate need of enzymes and nutrients in order to thrive. Scar interference with skin (from the huge steamroller that managed to trap her underneath- temporarily- when she had NF), Anemia. She also tested positive for a fungus called Candida. That is a fungus that grows on and inside many plants and beings. It can become systemic, spreading it's yeast spores all over delicate internal organs and wreak havoc. Part of the solution is to stop feeding it sugars. Sarah used sugars as fast energy, but it's not real energy. No life force can survive for an extended period of time only on sugars. Miriam also suggested that Sarah put drops in her soil twice a day to help eradicate the Candida.

It was a lot for Sarah to take in. And all from this strange machine. Sarah was still resistant, but decided to try to cut down sugars to see if it helped. The drops stayed on her table beside her for some time- a few days- before she decided to give those a try. She cut down a bit on sugar, but it was so hard. Mostly because she didn't feel strongly that this machine could possibly help her situation. Nobody else in the world (her world, anyway) used it on her before. She had never even seen one before. She didn't think it was worthwhile to rely on this information from the machine, or to base any dietary changes on it's analysis. So, she kept eating the Oreos. :)

The next week she went back to Miriam Maslin. She was honest about her resistance, and told her that it won't help to do these treatments that she recommended. She missed therapy with the "old Miriam Maslin", What made her go back, though, is that she trusts Miriam thoroughly and unconditionally. Somewhere, in Sarah's being, she knew that this Miriam healer woman was the right address for her. She felt sustenance from her.

That next meeting they discussed where the resistance is coming from. Why was Sarah resistant to taking proper care of herself? That was the base line question. We again worked with the strange bio-tensor thing. It was an eye-opening session.... Sarah learned some amazing things about herself, and her fears, with prompting from that machine! Miriam helped Sarah integrate each and every one of these 15 fears that we discovered. It was nothing like she had ever experienced before. She went home feeling unusually light and optimistic.

That day, Sarah, prototype 3 emerged. Why is it a whole new prototype? Well, Miriam explained it to her this way: We all have immense knowledge. Sarah had all the knowledge she needed to be nourished and cared-for. She could very well care for herself in an ideal way based on her knowledge. There wasn't much Sarah didn't know about a proper diet and nutrients. Even Sarah's main doctor in the health clinic told her she has Candida. That was a year ago!

So, we can have this knowledge, and not have it sink into our beings. Miriam said that it is a long way from our brains to our hearts. And on that long way, there is the throat... it is like a narrow straight that is very hard for knowledge to pass through. What made it even harder is that prototype two had lots of hard knocks. Surgeries, medicines, and trying to mother her four little sprouts. Fast and easy sugar/white flour were the shortcuts She depended on, and had no energy to think about changes.

So, prototype 3 has had a week of treating herself for Candida, both dietary and with the special drops. She also now takes other nutrients and supplements, and has drastically cut down on sugar, yeast, and white flour. That week was the First Week of the rest Of her Life. She felt it in every cell of her being. She cannot go back to what was. She feels GREAT, She completely had forgotten what that felt like. She has tremendous energy to flourish, and even is beginning to wake up in the mornings earlier to greet the day. Hard to believe, but true. (the headaches, although not completely gone, are getting much better, also!)

This is the first time since she stopped being prototype 1 that she felt great, consistently, for more than one or two days. And she knows how it happened; it wasn't by a roll-of-the-dice. She has a formula that she understands, on a very deep level, that diet+nutrients+supplements+ CARING FOR ONESELF is her KEY to blossoming! Oh, and lots of TLC. All plants and animals need TLC. Thank you, Miriam Maslin, for the TLC, the bio-tensor machine, and your warmth and
See you when you return from your travels.