Update from the hospital to heal the soul

Today is my 13th day here in the psych hospital.

I am envious of all the people who can just lie down at a normal time of the evening, and maybe read a page or two of something, and drift off to sleep. Sleep is an integral part of life... without it, we get unraveled.

I got unraveled.

During the waking hours, I felt I could deal with the PTSD relapse. But the less sleep I got, the less hold I had on day-to-day life. From up-close, though, I didn't really notice. I only noticed that here's yet another night I can't sleep. Or if I did sleep, I would wake up in a screaming nightmare. Then after that, I'd be up for the rest of the night.

I got here after taking too many medicines, in desperation to sleep. "Accidental overdose". If I look back on texts I had with our counselor, I can see the pattern happening. But in the day-to-day, I didn't take too much notice of how things were getting out of control.

This PTSD is very complicated... it's been diagnosed as complex PTSD (CPTSD). It comes from more than one factor in my life's history. I won't get into details. but this "trigger" that happened about two months ago reaches far back into my childhood, it's not about the adult stuff, not the hospital/NF stuff.

My sleeping now, 13 days after intake, is still not balanced. I'm in a withdrawal process, and because of that I'm dealing more with my restless leg syndrome, also. It always appears strongly during a drug withdrawal. It's very hard to withdraw from the family of Benzodiazepines- the sleeping medicine I was taking for 11 years, as well as the Clonex which I'd been very liberally taking in the recent months. It's in the Valium family, and has hooks in a part of the brain that does not let go very easily. I've been under the impression that it's nearly impossible to withdraw from those medicines. But, here I am, doing it. No choice. There are still bumps along the road. On Shabbat I had a **super delicious** afternoon nap, not induced by any medication. That was phenomenal, in my opinion. But it came unfortunately at the expense of night time sleeping Saturday night. I took what the nurses let me have, but I felt I really needed a Clonex to get to sleep. No Clonex, I'm weaning from that. So, I was up all night. I listened to some Torah lessons, and then most of the night was my audio book. Thank G-d for audio books when it comes to insomnia.

My father (Z"L) used to say the best part about insomnia is the next night... you are so exhausted from being awake two days straight that you sleep well the next night. Well, until now that has been true for me. But not now. Last night, Sunday night, was supposed to be the one where I sleep well. Nope. Again, up most of the night. It's the PTSD, it's the weaning, it's the whole picture. At about 2am, the nurse felt so bad for me (I was crying) that she gave me something (that was OK'd by the doctor on call) that wasn't part of my usual regimen. That got me to sleep. But it can't be regular. So, we are still figuring this out. I am again tired tonight, but that has no bearing on whether or not I'll sleep.

What I hope for when I get out of here is a predictable, reliable sleeping schedule, and therapists to help me slog through the CPTSD. And the courage to do it. I closed that carton a long time ago, never really dealt with it. This relapse blew the top off the carton, and now I have to deal with it. I am praying this place will set me up with the right practitioners for me to work through it, so I will no longer be carrying that carton around with me anymore.

Today I also started dealing with some other medical issues I have to deal with. I can make one or two phone calls a day for other things.

My two youngest kids came to visit me today, it was so, so welcome and good for my heart. Also three friends came to visit today, indeed a blessed day.

Signing off from the hospital which heals the soul.

Sarah Rachel Bat Tova

Embryonic hope

Many of you wrote to me assuring me there will be better days after my last blog post... and... you were all right!

The amazing news: I had one PAIN-FREE day... I mean completely pain free, top to bottom, morning to night. And I was very active that day. I went shopping to three different stores, did a lot of food preparation and cooking, and I kept doing stuff, and I was FINE that whole day. It was really tremendous. I didn't think that would ever be possible in my life again. I was cautiously delirious with a sense of health and well being. I didn't write a blog that day because of the cautious part... I wasn't ready to buy the neon sign yet for my roof top.

The next day I did *even more* than the previous day. Lots of more. And then after doing all that more, I did some stuff in our yard that needed attention. OK, I pushed it too far, and the pain- albeit much less- started seeping back in. Was I testing my limits? Maybe, but I really think it was more like I am just dying to LIVE, and DO, and I got carried away. I paid for that, though. The following day I was immediately in pain upon awakening, and it got stronger throughout that day, the second day after the Perfect Day.

But, I had a perfect day. I thought there would never be a time in my life that I could say that.

Now I know (well, I pray) there will be more of them.

But for the time being, I have more hurdles to jump.

I'm having problems with my right kidney. Dr. F did a treatment last week which included invigorating the blood to go through my kidneys, and it seems to me that it may have been a bit too vigorous, but that's open to interpretation. My right kidney is the one with nephrocalcinosis (actually my medical charts say it's bi-lateral kidney disease, but I never had pain in the left one), and it also has some sort of "unusual" cyst which was reported from the MRE test. Anyway, my right kidney and back right flank hurt the days following the treatment (like hurt a lot). So After speaking with him about it, he made time for me to come on Sunday (yesterday). That treatment helped a lot. It was acupuncture, gentle massage, and a few other things including an entire change in my medicine regime. I left Jerusalem yesterday afternoon in much less pain (and less worry). 

(Thanks, CB, for your driving expertise and conversation!)

It seems that I may have some sort of stomach virus, too, although in the back of my head I wonder if my recent days of diarrhea have anything to do with a kidney infection. Time will tell, and I'm aware of my body and what it's doing. I seem to constantly have the infection ghost by my side. After you've been through NF and a half a dozen episodes of cellulitis and other nasty infections, the infection ghost doesn't leave your side.

After I came back from Jerusalem yesterday I had my first class of rehabilitative yoga. This is hopefully a form of body movement I can do... the Tai Chi is too hard for me- it's all on the feet, and very much belly-strength oriented. I just can't do it these days, I've tried many times, it hurts too much. And I love Tai Chi. I can't do much at a gym, so I decided to try yoga. I did a little research, and found someone who specializes in rehabilitative yoga for people dealing with difficult medical situations, and it is one-on-one. Yesterday was the first meeting, and I found I could do all the exercises I was given. I hope to continue on that path. I need to get some strength back, even though I'm still in pain. Not simple.

Overall I am improving with the direction from Dr. F. He has many modalities, and is extremely knowledgeable and uninhibited by my multi-faceted issues. My belly pain is overall less, thank Gd. Its going to take much more time, but as I keep saying, I am in the right hands. And you know what? He's my only treatment plan... all- I mean ALL- other doctors have turned me away. A few weeks ago I had a consult with one of the top surgeons in Hadassa Ein Karem hospital. I had lined up that visit months ago. It fell on one of the days I was living at the Frischman's for the intensive two weeks, but I went anyway. He listened to my story, he looked at my scans. His words were unbelievable coming from a top surgeon. He said to me "as you were telling me your story, I pictured a much bigger [בלגן was his word] problem before I looked at your CT scans. Your scans look good, comparatively to what it could be. I don't know what is causing your pain, but I have two things to say to you: I wouldn't operate on you at all. I wouldn't even do an exploratory, I wouldn't touch you. And the second thing is that I am telling you not to let anyone operate on you for any reason that's not to save your life. What you have going on in your abdomen is very delicate, and there is lots of scar tissue and adhesions, and it can't be played with. One wrong move and you could be in much more pain, and have much more serious problems for the rest of your life. I have never said this to anyone, but I am telling you- do not do any surgery for any reason other than to save your life."

It was as if his words were coming straight from G-d, not out of his mouth voluntarily. It was so uncharacteristic for a surgeon to say that, and this, from a very famous surgeon. What I heard: "I can't help you. I won't even do an exploratory. I'm sorry you are in pain, but pick up your marbles and go home".

I returned to the Frischman's house that day for my evening treatment.

Also my family doctor has no ideas for me. Nobody does. Only Dr. Frischman is extremely sure beyond the shadow of a doubt that I can fully heal while in his care. So that's my only treatment plan, and please G-d it's a good one. I consider myself fortunate to have been turned away by Western medicine, and fallen into the right hands.

I am doing very well with all the weaning from my pharmaceutical drugs, also. Today I cut back my Cymbalta again, to one dose before the end. When I started with Dr. F, I was taking 120mg of Cymbalta daily. Today I started on 30mg. And I am on half (or even less actually) of my sleeping medicine, and that is also going down. And I am sleeping well. I am so happy to be finally getting off this stuff, it's been a long time coming. I am having withdrawal symptoms, and waiting until they pass until I cut the next dose. I've been here in this withdrawal place many times, as you all know. I can do this, and I want to.

So while I am still having too much abdominal pain regularly, we are working on my whole health. Sometimes still having to put out fires. Like yesterday when I came with the kidney pain. But even that treatment addressed, with the Chinese medicines, many ongoing issues I have, not just the kidney problem. 

I want to play horn again. I will play horn again. And I want to help women have healthy, strong births. I will do that again.

But my future is still insecure... I don't know for sure that I will regain all my health and vitality. I haven't worked for 11 years, I don't have a retirement package. I don't know that I won't need lots of health care in my not-so-old age. I still have four kids to raise and Bar Mitzvah, give weddings, help buy apartments and cars to start them off in life, as my parents and Robert's parents did for us. We pay for private schools and yeshivas, and all the other trimmings of raising kids. I want to be able to help them pay their rent if they want to learn in university while they're married. My future is much more unpredictable than most other people's (although of course nobodies life is sure). If I am going to keep seeing Dr. F, our "safe money" will be eaten up by that. The gas of going to Jerusalem once or twice a week is also extremely expensive- more than twice the prices in America. And what about our future? I need these treatments now to live, to get out of bed every morning. For a while there I couldn't even do that, I was in too much pain. He has already helped me tremendously, but there is a long road ahead of us, of that I'm sure. You all know from reading this blog for years that the medical issues I have are deep and complex. I believe I can heal, but that belief is in it's embryonic stages.

It's for these reasons that we have decided to extend the fund drive. Your contributions have been amazing, and very, very humbling. I have tried to write personally to everyone who left a name on their contribution. And for the anonymous donors, you have helped more than you know. Thank you with all my heart.

We haven't quite made the goal of $5,000 yet, but it's very close. At this point my bill is higher, of course, and Dr. F is worth every penny. Please share the website on your Facebook pages, and other organizations you may know about that could assist. And please know that all contributions are deeply appreciated.

https://thechesedfund.com/cause/restoring-talent-buried-by-pain

My mission is not only to survive.... I've been in survival mode, putting out fires for these almost 11 years. Now I want to *thrive*. And to quote something I saw on the internet today "to do so with some passion, some compassion, some humor and some style". That's me, at my best. And I think I can reach my best. With the help of G-d.

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.

living parallel

I've realized it's parallel... life. Not going in an upward direction, not heading for some point. If you are lucky, it doesn't go downward. It is parallel. Mine is, anyway. I thought I was heading for certain points... reclaiming my talents, etc. But I'm not. There is no high point to aim for. It's all parallel. There are high points in life, for sure. But we don't aim for them, they happen. They pop out of the parallel.

We (people who deal with chronic medical issues) watch the world go by, watch our kids grow up (at least, the lucky ones do), we do as much as we physically are able to do, but the goals just never seem graspable. I'm fairly sure I won't ever play in an orchestra again. That hurts my heart, but it is reality. And as far as returning to any other sort of normalcy, well, I think I have it the way I am ever going to have it, right now.

Yesterday in Tel Aviv, at my orthopedic surgeon, I got the "all clear". The healing is going well after surgery, and I can expect more, steady improvement over the course of the year. That is *good news*. My right thigh joint is on the right path. The pain is very minimal, and things are moving the way they are supposed to. I will get back to stability with regards to that leg. It will continue to get stronger, and then it will level out and no longer be a problem. Don't get me wrong, I am happy about this. It brings a "low" situation back to parallel.

Regarding other issues that NF (and Fentanyl) left me with:

Sleep problems. Big time. Awful sleep problems. Awful headaches. It started with the insomnia from the 10-month withdrawal period from Fentanyl, and hasn't gotten back on track. If I can sleep and wake up during regular hours, life will be parallel again.

Gapey: rashes and small infections on a fairly regular basis. I always wonder if this or that little painful nodule is the one that is going to lead me again to cellulitis. It hasn't recently, thankfully. That situation is a little lower than parallel. I am also always uncomfortable without the prosthetic pillow. I may have to start wearing it again, but that brings down other things about quality of life. We're looking for parallel here.

Also sub-parallel regarding gapey is that my bronchitis is back. The internal bleeding episode from last time (two weeks ago) has barely fully drained (there are still purple marks), and the pain is coming back again because of the coughing. That one clip inside gapey- the one of many- the one I feel strongest- is again getting irritated. I am taking cough medicine to try to keep on top of not coughing, but I am still coughing.... hard. Kept me up last night, made a migraine get harder. That was after I returned from Tel Aviv. Gapey hurt so much. So yes, it is good that my right thigh joint healed well, I am eternally grateful, and I mean that with all my heart and soul. I don't take anything for granted. But the rest, the fallout from NF, I just try to maintain parallel. I am a very strong woman, and can handle A Lot. And I fight these things that hold me back because of the deck of cards that I was dealt.

But maybe fighting isn't what we are here to do. Maybe just parallel is OK.

I recently changed the subtitle of the blog- I doubt anyone noticed, except the person who encouraged me to take his suggestion. Instead of "Rebuilding my life...", it's now "Building my life..."
That is a subtle, but powerful change. I realize I am no longer trying to piece together what was. I have to let go of that. I am just living parallel after what I could build out of the rubble. I built, it got built, and now I try to maintain parallel. Does that make any sense?

I have to go get more cough medicine, and Excedrin for the impending headache. And put more antibiotic cream on my skin grafts, hoping that the raw, thin skin won't get angrier.

I am strong, I have what it takes to live a long, good life. Parallel will be just fine. I guess.

Third day of withdrawal: struggling to breathe

Oh My Gd.
I had no idea this was going to be so insane. Nobody could have guessed.

From that one little 6mmg patch of Fentanyl... hardly visible on my arm... a little piece of tape...
removed from my arm, and my body is in total shock. I really feels like I went cold-turkey from a large dose. I should have, if this is what I had to look forward to, anyway. I even left that half patch on for two more days than I normally would have; I usually change patches every two days. The last one I left on for four days, so it would taper off. Exactly three hours after i took it off, I was hit with "brain zaps" (feels like electric synapses firing at random) and pain. OK, I expected that. I'd get that every time I went down a dose.

But the pain got worse and worse, the brain zaps were hell.
Over the next few days I was functional. Not on a high level. but functional.

Last night (which was Thursday- I took off the patch on Tuesday) was AWFUL. It was Robert's birthday, and I had high hopes to spoil him and have a little party. I even bought him a new bottle of 14 year old whiskey, and a chocolate cake. But, no party was to be had. I was a Mess. So much pain, migraine coming on strong. Also incredible weakness has been a feature of this whole weaning process. Even going up stairs winds me. My heart beats fast all the time and I feel it is labor to breathe. So instead of spoiling him and going out for dinner, I dumped the kids on him and went to bed to wallow in my misery. We did manage to have a happy birthday song with sparklers on the cake, and had cake. Can't leave a good chocolate cake un-birthday-song'd! At least that.

The migraine was strong and fierce last night. I slept with a cold pack on one eye, because it was actually an eyegraine- all behind one eye. It is often that way for me. I slept fitfully, but since I was so over-exhausted and wrung out, I slept, medicated. I woke at 3am, still with the headache, but less strong. I took another medicine to sleep. I slept heavily from that point on until 3:30pm today (Friday). I woke up today so weak I could hardly breathe and walk at the same time!

This is so crazy. The whole time, my brain is giving me strong messages that all I need is that small piece of celo-tape (clear tape) with Fentanyl on it, and things will be fine again. It is so crazy! I never thought that it would be this way. Such intense and weakening withdrawal.

It actually feels like when I was just recovering from NF. I had many doses of morphine in the hospital, and was sent home without it. I completely remember this feeling of being so weak that it is hard to breathe. Morphine depresses the respiratory system, and I guess withdrawal from it does the same thing somehow. I don't understand, but I relate to this feeling as how it was then.

I will get over this. It will pass. My body WILL find it's equilibrium.
But until then. ...whoa. I can't walk and breathe at the same time. Just walking across the room makes me winded. I can barely talk, it makes me so weak.

But I can write. And write I am. :)

Shabbat Shalom.
May you all enjoy the strength you have... never take it for granted. And for those who need more strength, may Hashem give you exactly what you need exactly when you need it.

perspective

I spoke too soon it seems. Or call it just riding the waves of this withdrawal.

Last I wrote I was at 18mmg. I stayed on 18 only for about a week, then went to 12. I am getting very impatient to end this already. Each reduction is a Whole Production. My body goes haywire, I roll with the waves, I level out to a higher level of pain. Then I cut another dose. Now I've been on 12 for about a week, and for some strange reason, now, at the end of that week, I am having bad withdrawal symptoms. Usually the worst of the withdrawal is at the beginning of the dosage reduction, but this one is having the side effects hanging onandonandonandon. Headache every day. All day. Better or worse depending on when I last took Excedrin.

It's now clear to me that I will not be off the Fentanyl by Pesach, which is in less than a week. I can't make myself sick over it. Have I told you how HARD this withdrawal is? My support system is not happening recently, either. I was supposed to see my GP last week, and when I showed up for the appointment, turns out the secretary had misinformed me, that my doc wasn't in, and the appointment is for *this* Monday rather than last. I needed the support last week, but apparently Hashem decided I'd be fine without it. Then, I had this appointment with the naturapath that I spoke about last time. I organized places for my kids to be while I go out of town, and took the bus into Jerusalem with a friend. We got to the office of the naturapath, and the door was locked. We were early, so we waited. 4pm, the time of my appointment, came and went, so we called. Turns out that they had canceled the appointment without actually confirming with me. They knew I was coming from Be'er Sheva. I know I had one "missed call" on my cell phone. I was in physical therapy at the time and couldn't get to the phone. After that, I didn't hear back from that number. No text, no voice mail. So when I called them and they told me they had tried to cancel with (with 5 times calling) me before I came in to Jerusalem, it was quite unpleasant; the whole "I did this, you did that", "no I didn't receive more than one missed call, my phone recorded one call from your number", "why didn't you send a text?", blah blah blah negativity. I said "look, I am not interested in arguing. How can we proceed now?"

But, the rest of the day was saved anyway. My friend and I ate a scrumptious lunch in a favorite restaurant in Jerusalem, and we laughed a lot. There is good in every disappointment.

This brings me to:

I smile, I laugh (baruch Hashem), I walk, drive, make food for the family, clean house, and all the normal things that mothers do. Thank Gd I can keep it up. But wow, sometimes I feel like shouting from the rooftops how hard this all is! In the background of my chemically challenged brain all sorts of unsavory feelings (physical feelings) are constantly being triggered, and I keep a poker face.

Then, I think about the terrible house fire that happened last week to a family in Brooklyn.
It was a religious Jewish family of 8 kids and two parents. On Friday night a week ago, their hot plate which was on for the purpose of heating up food for Shabbat, malfunctioned and set the house on fire while the family slept. The mother and one daughter jumped out of a window and are still in the hospital now in critical condition. The father wasn't home. He came home to the unspeakable tragedy of seven of his children having perished in the house fire. His house which he confidently paid for to protect his precious family burned to nothingness.

When I learned about this horrendous tragedy, I, or course, realized that my struggles are so trivial.

All four of my kids are home this Shabbat; Dov hadn't been home for three weeks, because of Yeshiva and B'nei Akiva Shabbats (he is a teen counselor for the youth movement "B'nei Akiva"). I have all of my kids under my roof. Pesach is coming in a week, my favorite holiday of the year (besides the work involved in getting to the holiday). My little family will be together with friends for seder night. We have wonderful plans for the week of Pesach, visiting loved ones up north. I have everything to look forward to. I am on a good transitional path; albeit profoundly challenging. (What transition *doesn't* include challenge? But coming off narcotics over the course of five months has honestly been one of the hardest things I have ever done.)

Two days ago, that bereft father came to Israel to bury his seven children (they lived in Jerusalem for some years, and flew the bodies back to here for burial). It is, well... unthinkable. Unimaginable.

Am I having a harder time than some of my friends living my life since I got sick? Yeah. We all have our burdens, we all have our stories. Mine is public, so it may stand out a bit, but if you talk to anyone and ask the right questions, everyone has an interesting, important story. Everyone.

Big week ahead of Pesach cleaning. I have a big house, and many dirty, disorganized problems to take on. My kids and husband will be home, helping. I will need to take many rests, I tire so easily.
I hope to see the naturapath either this week or next. He said he'd call me with possible appointment times. As for my GP, the appointment that was supposed to be last Monday is not this Monday. There are a lot of things I have to discuss with her about this weaning/withdrawal. I'm on the right track, i just need medical support at this time. I am in a bad way. The insomnia, eating problems... it's gotta be addressed. It will be. Everything at the right time.

I hope to write next week, but if not because things got too busy, i wish all of my Jewish readers a beautiful holiday of Passover! Think freedom. What does freedom mean for you at the seder this year?

from Be'er Sheva Israel, lilah tov; good night.

About withdrawal and God.

I'm still doing it.... on course with my withdrawal from Fentanyl.

The first week is awful, and then I can deal better the next week, then we go around and do it again. My sleeping is medically induced because of the insane restless leg syndrome which is a result of going off the Fentanyl, but at least I am sleeping.(-ish)
In some ways it is getting harder each time because now it is playing with my emotional balance; making me quite unbalanced. I have days of crying now for no known reason. Only in that first week, though.... so far.

I don't need to go into any more detail. I am staying with the program, and I have TOTAL faith that everything is in the right place at the right time. My body has been toxic for a long time. I'm dropping the doses much faster than I went up. It takes however much time it is going to take. I will have the Cannabis when I will have it. For today, that is enough.

The piece below is purely beautiful. It exactly speaks my language as to how I feel about God. It is about how we can, if we want to, just trust that there is a God. God is not a thing. God is not over there, or in existence, rather *is* existence. Torah teaches us that God is the space, the place of the universe, the Soul of all Souls. Torah says that there is nothing *but* God. So where are we? Just an illusion? We exist within God- we are facets of God. As a rabbi who I once learned with (Rav David Aaron) explained, there is none but "the One". We are part of The One. We are SomeOne.

I am a doula. I love everything about babies and bringing them into the world. It is miraculous. They go from growing in a small "god", and literally get born into the existence of the bigger God. It is mind-blowing when you think about it. This piece says it for me. Enjoy.

(I don't want a whole ideological discussion here, or a debate about whether or not God really exists, I just want to share something very, very special to me.)

~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~

In a mother’s womb were two babies. One asked the other: “Do you believe in

life after delivery?” The other replied, “Why, of course. There has to be

something after delivery. Maybe we are here to prepare ourselves for what

we will be later.”

“Nonsense” said the first. “There is no life after delivery. What kind of

life would that be?”

The second said, “I don’t know, but there will be more light than here.

Maybe we will walk with our legs and eat from our mouths. Maybe we will

have other senses that we can’t understand now.”

The first replied, “That is absurd. Walking is impossible. And eating with

our mouths? Ridiculous! The umbilical cord supplies nutrition and

everything we need. But the umbilical cord is so short. Life after delivery

is to be logically excluded.”

The second insisted, “Well I think there is something and maybe it’s

different than it is here. Maybe we won’t need this physical cord anymore.”

The first replied, “Nonsense. And moreover if there is life, then why has

no one has ever come back from there? Delivery is the end of life, and in

the after-delivery there is nothing but darkness and silence and oblivion.

It takes us nowhere.”

“Well, I don’t know,” said the second, “but certainly we will meet Mother

and she will take care of us.”

The first replied “Mother? You actually believe in Mother? That’s

laughable. If Mother exists then where is She now?”

The second said, “She is all around us. We are surrounded by her. We are of

Her. It is in Her that we live. Without Her this world would not and could

not exist.”

Said the first: “Well I don’t see Her, so it is only logical that She

doesn’t exist.”

To which the second replied, “Sometimes, when you’re in silence and you

focus and you really listen, you can perceive Her presence, and you can

hear Her loving voice, calling down from above.”

(apparently an unknown author, if anyone finds out who to attribute it to, please let me know.)

Rosh Hashana and Yom Kippur 5775

Three of my six Rosh Hashana challot (before baking)

With the new Jewish year always comes introspection and thoughts of how to do things differently in the coming year. We just passed Rosh Hashana, so the new year has officially begun!

About doing things different in the year to come, I have some big, important, life-changing decisions underway. I have built the foundation for basically two decisions, and I pray that I will be able to follow through with them both. 

Doing so, however, will truly limit my blogging. It has been limited, already, and I haven't even put these life changes into place, or even gotten the ball rolling. Until now, my blogging has been limited since I returned from the states because of jet lag, then Rosh Hashana & Shabbat, and generally catching up with the lives of my kids and the rhythms of our life here. Tonight marks two weeks to the day since I returned from my trip! When I was there it seemed like I was there for so long, like months, and now that I have returned, I have the same feeling, like I've been home for much longer than two weeks. It's just enough time to shake off the jet lag. Coming from the states always takes me about two full weeks before jet lag is over. Going there, however, I am usually straightened out in two or three days. Coming back is when you lose time, and it makes things harder.

The two things I set forth to accomplish in this year of 5774. I almost don't want to commit to them through writing, but it is important that I do. Some big, big changes are going to be made, and they will turn my life around.

One is that I plan to wean off of the narcotic pain meds: Fentanyl (morphine-like patches I wear, and have worn for five years). Each time I put a new set of patches on my body, I have many, many thoughts and emotions come up. My soul is not OK with this. I know I take it for chronic pain. That is why I haven't yet weaned; the fear of the pain. There is also fear of withdrawal- the symptoms- as well. It is awful, not unlike any other narcotic withdrawal. I have done it in small doses a few times, and I hallucinate, I have awful, awful, dark dreams, I shake uncontrollably, and vomit.

This medicine, however, is poison. The two biggest life-hindering side effects I deal with from it are being sleepy all the time, and digestive problems. I can no longer drive distances anymore because I am too tired, and it is dangerous for me at the wheel. I have come very close, many times, to falling asleep at the wheel. It never happened, thank Gd, but I know how to take a hint. I also suffer from brain power outages; that is when I forget words and even say words sometimes that have no connection whatsoever to what I meant, but it comes out of my mouth. I am extremely forgetful in an unnatural way. This narcotic, it effects every facet of my life. I need 12 hours of sleep at night as a rule. If I don't get it, I will most often wind up with a migraine. Coming off the meds has the hope of gaining some more normal waking hours.

I want my life back. The Fentanyl rules everything. It insidiously meddles it's way into every corner of my life and subtly undermines any efforts I make to forward my life or succeed.

The question remains, how much pain do I have? I know how much I have now, even being on the Fentanyl. How much would I have without it? An unknown. I'd need to play that by ear, so to speak. There is a possibility of going on something more natural instead of the Fentanyl, if the pain gets too bad. We all know that there is no way my life will improve if I am just exchanging drug dependence for extraordinary pain. I am in the early stages of getting in touch with some key people who research specific natural genre of pain medicines, and plan on consulting with them before I make my decision. That decision, to start consulting and researching, is made. Now it is just planning how, when, and where. I made an appointment with my pain management doctor (Dr. Z), to consult with him. I have a lot of questions. That is the first step. Next step is setting up an appointment with this person who is at the head of her field here in the above-mentioned natural form of pain control. A cousin is putting me in touch with her. It will go as it will go.

Over the Rosh Hashana holiday our guests were Robert's cousin from Beria, and his friend from Tzfat. In one our many talks together, his friend, Chaya, offered her place in Tzfat as a place to land for the detox period. It would be way too hard for me to be at home and going through that. I've done that before-- you can journey with me through that again in this post. I will plan this medicine withdrawal together with this special friend, in her lovely house (where she lives alone), so she can hold my hands and catch me when I am falling into the pit of withdrawal. It is *scary*. The hallucinations are awful. The vomiting is awful. With her offer, I see this goal as attainable.

I also have ordered a "power drink", but it hasn't been delivered. I ordered it after I saw it recommended on a blog I read; the one written by the woman who was in a plane crash, and suffered burns over 80% of her body. This is her blog entry about her experience weaning off narcotic pain meds. She recommended this stuff, and we researched it a bit, and it seems really good. I ordered it. Drinking it is supposed to help the chemical brain changes that occur with withdrawal, and give more energy when the "brain zaps" knock it all out of you. Unfortunately, it didn't arrive before I left the states, so I wasn't able to bring it here with me. I hope that someone coming here on a trip soon, will be able to bring it for me. I feel it would be a helpful aid with the withdrawal.

The other change, which I already have implemented, is setting my bedtime bottom line at 9:30pm. What has been happening for many years is that since I need to sleep at least 12 hours a night, and usually go to sleep at 12 or 1, in effect I lose my mornings. Every day. I wake up, and the morning is gone. This is the MAIN reason I have not been able to write my book.

Since September's writer's conference in the states, I committed to myself that I will do three days a week of three hours a day, in the morning. I usually have to get kids at either 1:30 or 3:15, depending on the day, so there should be no problem getting in three solid hours of writing. All I have to do is be able to get up. The way to do this is go to sleep at 9:30. It is not going to be an easy decree to keep, but I know that the decision has been made, and no part of me feels unclear on this necessary change. I have done it for three nights already, and the kids are getting used to it. I simply tell them that if they want me to sit with them on their beds to say the night time "sh'ma", it must be by 9:15. Showers at 8:30 and 8:45 (remember I only have the two younger kids home with me during the school week- Dov & Ya'akov are in high schools out of the city, and sleep there during the week, coming home for Shabbats). If they are not ready (usually it is Shifra who is puttering around and not paying attention to time, going to bed at 10 or 10:30 quite often) by 9:30, they will not have me to tuck them in. I will go upstairs, and put myself to sleep. I can do it, and have done it.

My goal for the book is that the first draft manuscript will be complete by the writer's conference in Baltimore next year. I plan for it to be done before Rosh Hashana next year. I know that is a totally doable goal, if I am organized enough to eek out the time to write. Three mornings a week of three hours a morning. Bedtime 9:30. It's good for the kids also, not just me, of course. We'll all benefit, and all our lives will feel more fulfilling because of being able to get up in the morning, not dragging one's self out of bed, like the kids do almost every morning. And me, I will hopefully avoid the not-enough-sleep terrible migraines with this plan. It is RIGHT, and I feel it in my whole being.

These two decisions are so strong in me, I know it with all my being. The narcotic pain medicine withdrawal will have it's own planned structure, made clear to me in time. The early bed time resonates with every cell of my being, this is the exact right time to implement it. I know I will be happier having my mornings to write, and the kids will be happier for two reasons- one because they will not be so tired during the day, and be able to get out of bed easier, and two- they will see that *I* am happy, and writing my book, and excited about life. It will make our whole little cosmic corner of the planet happier, and healthier.

I am taking control of the things that have given me such sadness. Well, I am making decisions, the control part is up to The Big Guy. I ask for Him to bless these important decisions. Only time will tell. But, I think that at this point, I am pretty sensitive when it comes to figuring out if Hashem has blessed a decision or not.

Starting tomorrow evening, Yom Kippur, we basically have 15 hours of praying to Hashem for our lives. 15 hours is not that long when you consider what it is you are actually praying for! But it is very long when you take into account that we are fasting 25 hours while doing it.

It's currently slightly past my 9:30 bed time, and I am closing the computer. This is the third time I have stopped working on it before it was finished, because of my new bed time. If I weren't being strict with this timing, I'd now proof read, edit, and find a picture or two to add in. Then I'd publish it, as well as publishing the new blog post on Facebook (my two pages on facebook... if you haven't seen the new one for the book, go here and give it a "like"!) as well as posting it to the Yahoo list with our Anglo group in Be'er Sheva (where I live), to reach a larger audience by inviting people to read my new post. So, there is at least another half hour work here, or more, even though the content is written at this point. That is often what kept me up late if I was writing- the inability to cut-off and not finish until the next day. I have been given the gift of removing the urgency. My priorities are set, and I feel such strength from that.

On that note, good night! I'll post this tomorrow before Yom Kippur. :)

Didn't get to it before Yom Kippur. We are on Saturday night here, after surviving the 25 hour fast. It's *hard*. I am spent. but I did it. I think that probably the Rabbis would be lenient with my situation, because I am on heavy medicines, that I wouldn't have to totally fast. But I don't ask. I don't ask for a leniency. I can't imagine not fasting on Yom Kippur. If I was told that I didn't have to, I'd be at odds with myself as to whether or not to follow the leniency, or listen to my soul, which wants, and needs, to fast on Yom Kippur. So, I don't ask. Yes, it is hard. It takes everything out of me. But I made it to and from shul (walking, of course) three times in the 25 hours, prayed my heart out, and joined the Jewish people in communal prayer. I'll rest tomorrow.

OK, ending here. This blog spans over about 9 days. I don't know when I'll write again- things are crazy busy, and with an early bedtime, things are getting whittled down to the essence. And we have another holiday in four days!!

May this Jewish new year really be a time of renewal of spirit and peace!

It's going to be a good one. I can feel it in my bones. Thanks, bones. :)