A beach, a wedding, an intensive care unit, and a family.

I did have that beach day, and it was **amazing**. I went to the beach alone for the first time in I-don't-know-when. I got to be alone with my thoughts, my feelings about all the heavy things that are going on in my life recently, and I swam in the Mediterranean to my heart's content. Unfortunately my leg became quite discontent with the exertion of swimming in the large strong waves, but I loved it anyway. Me and the beach, we are soul-mates. I gotta do that more often. The spiritual power of a natural body of water is so cleansing. I felt the dark cloud that was hanging over my head just dissipate with the waves, and evaporate in the blazing Israeli sun. I returned home renewed and at peace.

after a swim....

enjoying my solitude

Sunset over the Israeli flag... pure beauty.

That was Wednesday of this week.
That night I called Rabbi Fisher to get a recommendation for an orthopedist.
If he was going to recommend my recent orthopedist (who did arthroscopic surgery on my left leg twice), I'd have to tell him the whole history of why that doctor "fired me" after I became a tomato on his operating table last year. I was prepared to try once again with that orthopedist if Rabbi Fisher recommended him, especially since I am now off narcotic pain meds and am a lower-risk patient.

Instead of going through all that, though, at the outset Rabbi Fisher recommended a different orthopedist who I had never heard of! I thought my guy was THE arthroscopic hip specialist, but he wasn't the first "go to" with the recommendation. Interesting. Rabbi Fisher gave me this orthopedist's phone number. I did venture to tell him that I have had two successful arthroscopic surgeries with this other orthopedist, and even with that information he still recommended the new one. OK, then!

So I called the new guy the next day. He doesn't have an opening to see me until November! The secretary told me that if she gets a cancellation before that, she'll call me. She said there was a good possibility of that, but she couldn't promise, of course.

I *really* was hoping to get this surgery sooner. I am pain on the right side *all the time* with this, on top of the chronic pain I have from all the surgeries I've had on the left side. It's too much. Well, I am handling it without pain meds, so I guess it's not too much, right? Too much means I can't handle it. I guess what I mean is that I don't want to deal with this. I want a higher quality of life. I was actually thinking of doing the surgery at the end of August when I get back from the US, because Robert is still home for the summer before he goes back to work, and I could have good recuperation time with him home. That's not gonna happen. Well, by now, we know that Hashem makes these decisions in the end, not us. I thought I'd have this surgery last summer when I was ready for it, and got all the way to the operating table. That blog update is here, if anyone wants to look at that episode. It didn't happen then, and I wondered in the back of my head if it would ever happen.

I upped my pain meds at that point. Numbed that pain a bit more.

I'm now off pain meds. I don't plan on going back on them. I have come too far, through all the withdrawal, to reclaim my body from the side effects of Fentanyl. But I am now feeling pain much more acutely.

The newest development with the right hip is that the entire leg now has a tingling sensation all the way down to my foot. Pins and needles. almost all the time. I assume there is a nerve pinched with the impingement. It is very uncomfortable; although it's not pain. It just takes all my attention when it gets bad. All these things- pain, tingling sensations, take me away from being in the world at large, and drag me into the world of self. It takes away the entire world, and my position at any given time in the world, to have a private conversation in my head, which signals to me something going wrong. At these points, I can barely concentrate on conversations.

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

On another front... my friend who had cancer surgery last week.
She is still sedated, almost a week later, still in ICU. Her situation is fragile, and they haven't been able yet to take her off the respirator or lessen the sedation. She has undergone a series of surgeries. Without going into any more details, I'll just say that she still needs your prayers. Shoshana Chaya Bat Basie.

Because her story involves the same surgeon, the ICU, induced coma, and numerous surgeries, it has been a heavy time for me. I feel I am healthy enough emotionally to be in her life and not make myself traumatized again, but at the same time, I do struggle. There are still loose-ends in my own story, of course. I am not at liberty to discuss them here, but they do weigh heavily on my heart.

Most of us have stories with loose ends, though, when you think about it. Nobody's life can be wrapped up in a neat little box. We all have deep stories, once we open up. Those stories are the ones that propel us through life. These stories happen in order to teach us our specific tikkun (improving on the world, fixing something that is wrong in your soul) for this lifetime.

I love my life, I love my husband and incredible children.

Having fun with "selfies" at a wedding we recently attended.

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

I write here because my story needs to be written. I use this space to let my soul roar when it needs to. I know, though, without a shadow of a doubt, that I am blessed beyond the depth of words. I Survived NF. Most people who confront that beast don't survive.

I get up every morning on my own two legs, and I communicate on every level with every member of my family. I get to continue mothering my children. Full time. I see them, hear them, feel them, taste them, smell them, and hold them. I am fortunate beyond measure.

May Hashem help my friend who is now in such fragile condition in the hospital, be able to walk out by the strength of her own two feet, and have all her senses open to her little girl for many, many years to come.

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

We are up north now for a few days. We're in Tzfat, and it's beautiful. It was visiting day at Shifra's sleep-away camp (she's there for three weeks) on Friday, so we made a little mini vacation out of it, and stayed with Robert's cousin Chayim, at the lovely house of his fiancee Chaya, although she is in the states for a few weeks.

Here are some pictures from visiting day, camp Amichai, 2015:

Shifra and Dov looking awfully cute here, right?

The whole gang! (yes, Azriel has his arm in a sling,
but it's not broken, and is slowly but surely healing,)

visiting day over, saying goodbye to Big Sister.

Pain. Acceptance. Faith. (eat, pray, love?)

I am honestly not sure if I can keep going with this level of pain. This is what was lurking behind all that narcotic pain medicine, and it is hitting me like a hurricane. I had hurricane warnings, so to speak, but it is much stronger than I thought it'd be. It's very nice to go off pain killers while the medicine is still actively helping with pain. I learned that we *do* forget pain. Just like they say with women and childbirth; if we didn't forget pain, we'd all only have one child. I forgot what was there at the outset of this pain-relief seeking episode 5 years ago, after the surgery to put the mesh into gapey. Either I forgot, or I was lulled into thinking that after this long, it's sure to be better than it was then.

I am presently unmedicated, thank Gd, but what does that mean for the long run?

Well, one thing I pretty much know, almost for sure, is that I will be going through with the surgery to fix my right thigh joint. I have had a lot of fears about it, understandably. What I know is that getting rid of the problem in the right side will lessen my burden of pain exponentially. It won't alleviate it altogether, because the left side bears the brunt of much damage and causes pain as well, of course. I intuitively feel, and have confirmation from the important people in my life, that fixing the right thigh will, in the end, be beneficial if I am going to live life unmedicated.

I have an important MRI on Wednesday. It is for both thigh joints, pelvis, and abdomen. It's going to be long (they told me 45 mins to an hour), and since I have to be fasting, I know it is with contrast agent intravenously, as well. I am relieved to finally have the test, and know for sure what is going on in me. The biggest question is whether or not the PVNS is in the right joint. If it is, than we have no choice but to operate and get it taken out. If it isn't, and the pain is from the impingement and labrum tear, than I have pretty much decided I will fix that, as well. So, unless there are findings of PVNS in the left thigh joint (which there was in 2008 and  has a 50% rate of recurrence), I am looking at surgery for the right thigh, probably in October, after the Jewish holidays.

Well, I can plan, of course, but whatever really happens is the Big Boss's decision.

What I do know is that now more than ever I feel that I am in category of "chronically ill". I hate that label. Since I went off the pain meds, though, it has become clear to me that I am there. You'd think I'd have admitted that years ago... all I can say is that there are differing levels of acceptance of one's situation in life over the years, and having increased pain has been an eye-opener for me. It's forcing me (and my family) to realize that the situation is worse than we had been accustomed to. A wake-up call. I am not willing to go back to narcotics- no way. The price was too high, with no end in sight.

I guess any way we slice it (no pun intended), in May of 2007 when I got NF, I was entering into an uncharted world that would change every single molecule and centimeter of my and my family's known existence. I never dreamed of retiring early from my careers (I was 39). I thought we'd have more kids. I was in the prime of the "creative years". I never dreamed of any of this. I don't want any of this. But as I teach my children, accepting reality is the first step toward faith. I say that because usually accepting reality means accepting a circumstance that we don't want or are not happy with. Admitting that we are in a situation like that, in my eyes, naturally lends itself to striving to make it better. In my world that means turning toward Hashem, and leading a life of emunah (faith). The more connected we are with that Life Source, the more our life is blessed with what we need.

Like the Rolling Stones said, (with a beautiful horn solo in the beginning of the song) "you can't always get what you want...... but if you try sometimes... you get what you need." The "try sometimes" is where the growth is. "Try" is related to the word "trial". And that is exactly what these experiences give us, our trials that comprise our lives.

Philosophically speaking... life.

It's almost been two weeks since my last dose of Fentanyl. Nothing about this has been easy. I am waiting to learn what my "new normal" is, and I pray that it is not this, what I have today. It's been so up and down, it's hard to keep up with myself.

Last week was really good, actually! I went away on Thursday and Friday to a writer's course. It was sooooo good for me, and I wrote and learned so much. It was in Jerusalem. I drove there because it is actually less walking than public transportation, and because I am off the Fentanyl, I am not so sleepy at the wheel anymore. Thank Gd. I stayed overnight with a dear friend, and even got another social visit in that night! I met up with friends for dinner, and it was really special. If I was being cautious, I wouldn't have gone out that night, and life would be that much less fulfilling. (more on that in a few paragraphs.....)

Came home on Friday to the business of Shabbat approaching. thank Gd for awesome Robert... he cooked, drove kids around, and prepared tons of food for the kiddush we sponsored at shul. We had many guests, also, and it was a very full and busy Shabbat. I really did a ton... lots of cleaning, setting, chopping, clearing, serving, etc. It was much more than I felt was in my "comfort zone", but I just kept chugging because, well, you know, that's me. We even went out a bit Saturday night, but I was zonked and not much company. It's OK. The point is that I went way out of my "comfort zone".

That may explain why I am sooooo SPENT now. Yesterday and today have been really hard. I guess that is to be expected. But the pain levels are rising, and I am getting worried. Everywhere that I had pain before Fentanyl, is all coming back (mostly right hip and Gapey, and to a lesser extent the left hip). As I said, I have to wait to see what my real new "normal" is, and this, now, may be more intense pain than when I am well rested, but in life, one is not always well-rested. That is just a fact. And, add to that the issues that I am dealing with regarding sleep. and I am actually not faring so well. Broke down crying today because I don't know how much more of this I can take. I am exhausted mentally and physically. It is *hard* to live with pain. Add to that not sleeping well for many months, and I am deteriorating. Like usual, you can't really "see" that when you see me, but that has always been the case. I keep doing and going and doing and going. But you know what? There is a reason for that.

This is life as I know it. It has been eight years of major surgeries, pain, and medicines, and it's not going to change much. (I'm not saying any of the amazing GOOD from these years, but don't think it doesn't exist! Quite the opposite.) I am glad to be off the narcotics, and this is the "new" life as I know it, but we don't have a crystal ball to see into the future. I have to keep going and doing. I need sometimes to push myself and sometimes hold back. Yes, I push past my comfort zone. I do it a lot. Yes, I pay for it. But I am *living*. What I mean is, if this is "life as I know it", than I need to LIVE it as fully as possible. The bad days really can be very bad, like today. I wish I didn't have such peaks and valleys in my life. I'd prefer even keel, but that is not what I have. If I work to create even keel, I feel that life will be missing it's color. Even keel would mean opting out of many things that I do, putting even more of the load on Robert, and being on a general lower level for the whole family, and myself. I would have a shorter fuse, also, because I need a basic level of order and cleanliness in the house. It's not simple, by any means. Life with chronic illness is an entirely different mindset than life without. What I am saying in too many words, is that I *know* what it means to overdo it. I *know* when it is too much for me, and I do it anyway. That doesn't make it a good thing, or a bad thing, it just *is*. In the best of all worlds, I wouldn't "overdo" it, ever, and life might be more balanced. But we don't live in the best of all possible worlds. I am alive, and I want to live. And if I live, I have to live with chronic pain and exhaustion. That's just the way it is. That's the hand of cards I drew. The pain and exhaustion are better when I rest a lot. But I am not the "rest a lot" type... even though this life of the past 8 years yeilded much more resting than I could have ever pictured myslef doing.

I just don't how much more I can deal with sleep problems and higher pain levels. It's getting me.
But we're waiting this out, and coping as best we can.

Six days after, doing better.

My doctor gave me a standing ovation. 

Literally... she stood up from her chair and clapped. I told her nobody has done that for me since I played in the orchestra. She said she had never done it before, either, but this was such a monumental occasion, me telling her I did it, the weaning is over, she was so proud of me. That was nice, indeed.

So, the anvil was slowly lifted off my chest, and my free-breathing returned yesterday. That was one BAD experience. And, it's behind me.

I am dealing with lots more pain, mainly in my right hip, actually, the one which almost got fixed last summer (but the surgery got canceled because of my allergic reaction to the antibiotic on the surgery table). The left one hurts, too, but it's a different kind of pain. They are two totally different types of pain. My wonderful physical therapist yesterday decided to tackle some weak muscles in the left side. Wow, am I sore today. Easy exercises for some... but my body took it hard. I'll tell her next time and we'll have to tailor it a bit.

I am still doing Tai Chi, and that is perfect for me. Slow, rounded moves, moving muscle groups slowly and systematically. I can shape it to my own body, taking smaller steps for instance. The instructor is very special... lucked out on that one.

Sleeping is still off, but on Shabbat I actually slept through the night. Medicated, yes, but the medicine let me sleep. The insomnia I experience from weaning, no amount of medication put me to sleep. Then the RLS came on strong, and is still strong at night. Even so, I feel that slowly I will be able to get off the sleep medicine, too, but it's going to take time. I've been taking it for 7 years. It started because of having PTSD (post-traumatic stress disorder) after NF. I couldn't sleep because of the trauma, nightmares, pain. My body got used to the pills, and the pills granted me a good night's sleep. I haven't gotten off them since. It's going to be a lot of bad nights to get off them, and I am nowhere ready to start down that path. I am still very weak as a result of the last part of the weaning. everything in it's own time.

The substitute, if necessary, will be the Cannabis. I am now in the process of changing providers so I can get the right type for me. The levels of substances (THC:CBD) have to be tweaked so that it helps me relax (relaxes the RLS), sleep, and have less pain overall. It's going to take another few months before I get it, though, because of bureaucracy and needing to renew my licence. That is frustrating, since I know it is the only thing that helps my RLS.

Going to sleep... please Gd.
We're getting there. It's never going to be 100%, but I am doing what I can to get healthier. I am not yet reaping many benefits I look forward to, but a few of the side effects from the Fentanyl are fading away. That's awesome.

Many complicated issues to deal with, and feeling stronger pain is going to be a big adjustment. One day at a time. Quite literally.

It was good to get that standing ovation, though, you know? :)

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.

I. am. narcotic-free.

It started here. September 21st, 2011. Go read it, it's worth the read.

It ended today.
I took off the last half of that little piece of "clear tape" this morning. Fentanyl and me, we are

D O N E .

Left-overs.

I am still having withdrawal. It is unknown how long that will last. I am fuzzy-headed, tired and sleep-deprived because of insomnia all the time. I have to get off the sleeping pills, too. That is my next goal to conquer. I know now that I can do it.

I saw my healer on Sunday (Miriam Maslin), and we worked a lot together to come up with plans and resources to help me regain [more of] my health and strength. I also have a working plan to get off sleeping meds. Oddly enough, I have a gut feeling that I will start sleeping normally when I do. Eight years of sleeping pills is a long time. Enough. Once I get the sleeping back on track, life will be so much easier! It is ****so**** hard to live with insomnia. Life is always out-of-whack, 24/7. I can't even nap anymore. I can lay down, exhausted, but deep sleep does not come.

I will work my way out of this.

I got off of 100mmg of Fentanyl in... what... 7? 8 months? I can do *anything*.

My body will be less toxic. (It already is!) My digestive tract is slowly coming back "on-line" after being assaulted with narcotic pain relief for five years. Slowly. But surely.

And the pain?

yeah, it's there. Sometimes lots of it is there.

We borrowed a wheelchair to get to a BarMitzvah on Shabbat, and I was in pain the whole time. (I danced at my cousin's wedding on Thursday, and my entire pelvis was totally seized up and in pain Friday... could have something to do with that).

The newest question is whether or not I should fix my right thigh or not. Not fixing it means I will live with the pain, as I am now, and as it gets worse I will re-evaluate. Many people have told me, however, to not let these things get worse... it makes the surgery more complicated. My physical therapist said to me yesterday that if it hasn't gotten better in the three years since it was diagnosed, and indeed has gotten worse, there isn't much of a chance for it to get better on it's own, no matter how well I take care of myself and it.

I have an MRI scheduled for the end of June. I plan to wait to see those results and then decide. First we have to know if I have PVNS in either joint. We already know (from numerous MRI's) that there is a tear in the Labrum of my right thigh. That isn't an emergency. PVNS is. So, much like a cancer (but NOT cancer), each scan holds tension and question marks until results are obtained. PVNS is a rare tumor disease in which the tumor(s) grow on the synovial duct- the ducts which bring the synovial fluid (likened to the oil for the joint) around the joint. The disease itself can, Gd forbid, cause one to loose a leg. In that way it is like a cancer in it's destructiveness, but it does not grow outside of the joint, so it is not deadly. (Actually in one case we saw on the internet, PVNS *did* grow outside the joint, but it was an isolated case).

I had that in my left thigh joint in 2008. The surgery to get rid of it is called a "synovectomy", which was successfully done in that year. Then the next year (or two years later? I don't feel like going through the blog at the moment to look for it...) I had another surgery on the same left thigh to fix the tear in the labrum, like I have now in the right thigh. Is this confusing? Yeah, I know it is.

So, the left thigh, with it's NF "hole" (Gapey), skin grafts, massive scar tissue, mesh holding in my innards, and two orthopedic surgeries afterward is often where I have pain. Obviously. Now, without the Fentanyl, I feel it much more sensitively and more often. OK, I can cope... usually (not always, as we saw this weekend after I danced at the wedding). The right thigh only has a tear in the labrum and impingement (the condition is known as FAI). That has it's own steady pain, but different than the left. Fun, right?

All I know for sure is that me and narcotic pain relief are FINISHED.

Whatever the future holds will be guided by Hashem, as it always is. And I thank Him for giving me the strength do this monumental task of getting off the Fentanyl.

I can hardly believe it myself. I'm done with Fentanyl. THANK G-D.

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

Post-script: I wrote that in the morning... now it is evening, and it's been an awful, awful day. Such strong withdrawal, I feel like I went off a huge dose, cold turkey. My body is in shock. I have brain-zaps, shaking, tremendous weakness and shortness of breath. I am functioning, though. I have been making healthy food for the kids, holding conversations, and driving to activities. No choice, right?

I pray that this will pass soon and I can enjoy my accomplishment. One thing I did enjoy this morning, before things got hard, was this: taking a shower without having to worry about my sponge rubbing off the patch on my upper arm. I have wanted that for a long time. It was a small, yet triumphant feeling.

I am nervous about how the night will go. At this exact moment, my left leg is vibrating and shaking from the RLS. Send up a prayer, if you have one to spare. And thank you, as ever.

Sarah Rachel Bat Tova