Sunday, July 26, 2015

A view into my mind

One way I get through the constant drone of pain I have is to remember that people have persevered through all sorts of orthopedic and medical problems and have achieved great things. For instance- the Ethiopian Jews who walked-- walked-- across Ethiopia to reach Israel. When I came here in 1995, I had a free ticket, and a borrowed $1000 which was meant to last, hopefully, until I got a paycheck from some orchestra. (thanks, LD. You'll never know how much that meant to me). That's it. Just got on a plane with my free ticket (paid for by the youth orchestra I was teaching at the time. They went on tour to Israel. They left after two weeks, I stayed). Two weeks later, when the youth orchestra left, I played auditions for orchestras all over Israel, and indeed got that first paycheck just as the $1000 was running out.

Some Ethiopians had the opportunity to get on a plane in Addis Ababa, but needed to walk to the capital city from their village, no matter how far. I'm quite sure they had to deal with all sorts of joint and pain problems, you know?

Sometimes the mindful act of remembering that can humble me enough to be able to put the constant drone of pain on the back burner. I will be able to have at least one source of pain taken care of pretty soon. (I hope). Sometimes I long for the [much lower] level of pain I had while on Fentanyl... but that longing gets squelched when I return to logic and remember why I went off the Fentanyl. I wonder if all chronic pain sufferers have this constant inner dialogue...

Can you believe I forgot to tell the new orthopedist that I have tingling down my leg to my foot (right side)? I just forgot to tell him. My story is so complicated with shunts of all sorts of side-issues, that it is hard to focus on the today when I also have to fill-in a new doctor with all my history. I think I was just about to tell him about it when he was doing the physical exam, and he saw the pressure garment I wear, and I had to explain the lymph-edema issue, which distracted me. The tingling sensation is actually sometimes more annoying than the pain. Sometimes it feels cold, like in a confused-nerve sort of way. The pain is pretty localized, but the tingling thing is down to my foot. I can't get comfortable.

Anyway, enough complaining.

My friend in the ICU in Soroka still needs your prayers: Shoshana Chaya bat Bassie. She is in about the same condition, still sedated and on a respirator, still with a fever of unknown origin. Today marks three weeks. Her five-year-old daughter is well-adjusted and doing very well, thank Gd, but she wants to see her mommy. Please keep them both in your prayers.

Shifra holding my friend's daughter, beach in Ashkelon, last week
(Azriel heading toward them in the distance on the right)
This day of fasting (called Tisha B'av) is almost over. I have been fasting now for a bit more than 24 hours. It has been a difficult, but meaningful fast for me. May the power of communal prayer and fasting not only impact the future of Am Yisrael as a people and a nation, but also heal the ill and infirmed among us.

Sarah Rachel bat Tova

Friday, July 17, 2015

New orthopedist

Yesterday (Thursday) started with a great session of Tai Chi.
From there, instead of getting my lymphatic system drained, because the physical therapy place canceled my appointment, I went to the ICU to be with my friend.

From there I picked up my friend's dog. Her dog had been staying with someone else, and they wanted to switch her to another house. I have taken her dog many times in the past, and she and Emma get along well. She is a very sweet big black dog. So, we now have two dogs for the foreseeable future. I pray my friend will be well soon and can go home to be with her dog, and her daughter. Things are starting to look better, thank Gd, but there is a long way to go still.

After settling her dog into our house, I headed off to tel Aviv for my orthopedist appointment.

I left on the 4pm train and got home at 9:45. LONG day.
But good.

I feel I am in the right hands with this doctor.
Interesting, because he is actually the colleague of the doctor that Rav Fisher recommended for me. Turns out that this colleague is actually a thigh joint specialist. My luck!

I never quite know how I am going to tell my story... it has to be told to new doctors, of course, but I never know how to start. This time it was pretty easy. He started out by asking if I have any allergies to medicines. I rattled off my list. Then he asked me if I take any medications regularly. Told him those, too. That was when he asked why do I take Cymbalta- that is for nerve pain usually. And why am I allergic to so many antibiotics? Enter... Sarah's story. A bit of eyebrow raising, but mostly he was cool and collected and writing down what I said. He's pretty young, but really did seem to know his stuff. When I told him I had PVNS in the left thigh joint, I could almost see him searching his brain file drawers- it is a very rare disease- and then the light dawned on him. Of course, he then asked how it was taken care of, and I told him about my previous orthopedist, and the surgeries I had with him, and why he fired me and didn't want to fix my right thigh. If he was looking for an interesting case to cross his desk yesterday, he got it. :)

He ordered the tests I need to do. I need an MRA- which is like an MRI but with dye injected directly into the joint. It's painful. The "A" stands for arterial. The most recent one I had of that kind was from two years ago. He looked at that, and saw something he thought was questionable, so he ordered a new one. Also a few x-rays, one in "frog" position... that's gonna be fun... not!

I love being at the orthopedist... "does this hurt?"  Yeowww! Ya THINK?

Came home quite sore, but optimistic that I found a doctor who cares, and wants to help, and also has a healthy dose of caution because of my history. The secretary said that as soon as I have dates to do the tests, tell her, and she will schedule me to see both doctors- the main one and his colleague- together. She said that the November date is not relevant anymore, she'll get me in as soon as I have the tests. Hopefully late August or September. I am going to the US for the first two weeks of August, so probably the tests will be after that. I'd be surprised if I can get in for the MRA before my trip, but ya never know. It is a whole procedure, not "just" like an MRI. And the health insurance has to approve it first.

So the wheels of progress are turning.
And so are the wheels of the clock... it's almost Shabbat!

Shabbat Shalom and chodesh tov (new Jewish month) to all!

Wednesday, July 15, 2015


My friend is still in the ICU on a respirator. It is really heavy, I can't go into it all. She has short amounts of "wakeful" times, where her eyes open, and yesterday I was privy to one of them. I saw her open her eyes. I was so happy to see her eyes. As soon as she could focus, her face registered stress and fear, and a few tears fell down her cheeks (which I wiped away). I wondered if maybe she was in pain. I told the nurse my concern, and she raised the pain meds a little (...Fentanyl). I tried to comfort her. I spoke healing, soothing words. I asked her to blink her eyes if she understands me, and she didn't blink. Doesn't mean she didn't understand me, though, just that she couldn't control her eye lids just yet. I do believe she understood me.

After spending three hours there yesterday, talking to the doctors, and coordinating things with her other friend, I took today off. It's really intense being in intensive care. I am taking care of myself.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

We had a great vacation up north, from Friday until Monday. Awesome family time. 

Dov & I back-to-back with a Wazi on my lap
Me & Ya'akov in Tzfat

Four dudes on horses L- Rt: Dov, Azriel, Ya'akov, cousin Howard
Dov's silhouette in a fortress look-out

yours, truly

Wazi on his horse
I went around and did stuff, and also had to pass on doing some nice things because of my pain situation. I would have liked to go horse-back riding with the kids and cousin Howard, but that is something that just isn't in the cards these days. It was after a day of walking a lot, and I know my limits. Thing is, though, how much *more* pain would I have been in had I gone? I mean, as it was, driving home that night was pure torture. Robert was driving, and I was in the passenger seat. I had to take off my seat belt on a number of occasions and try to squirm into a position that could provide relief for a minute or two. I didn't get one blink of sleep. If I *had* gone horse riding, would I have been in more pain? Would it have done damage? Probably not. It's just that pain is never a background noise. It is always front-and-center, it's just a matter of how strong it is at any given time. It is NOISE. I have all sorts of internal dialogues going on in order to just deal in the normal world.

If it was just one side of my body, maybe it'd be easier to deal with. The drive home from Tzfat on Monday night featured the left side acting up. Gapey hurt, as did my thigh joint. I could not get comfortable the entire three hour drive. I wanted to scream. (but I didn't. I did complain quite a bit, though, poor Robert).

Usually on a day-to-day basis, if I am well rested, the main source of pain is the right side thigh joint.

Which brings me to tomorrow...
Remember that the orthopedist who was recommended to me couldn't get me in until November? Well, I still can't get in to see him until November. *But*, I called back his secretary to tell her that I may need another MRA, because the last one was two years ago. I asked her how could I have the test done before I see the doctor in November. She then told me that his colleague, who happens to be a thigh joint specialist, sees patients every Thursday. I can get referrals for the tests I need from him, and be prepared with all the tests when I go see the orthopedist in November (or earlier, perhaps, if I'm lucky). So, I'm going to do that. I'm going to see the colleague tomorrow, in Tel Aviv.

I'll let you know how it goes.

In the meantime, I am appreciating being able-bodied, and being in the world with my children. I don't take it for granted for one minute. I pray that my friend gets to appreciate that too, very soon.

Sunday, July 12, 2015

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.

Wednesday, July 8, 2015

Bedside Tehillim (Psalms)

From the book of Psalms 
(יב through) לח:ד

"There is no soundness in my flesh because of Your wrath, no peace in my bones because of my sin. For my iniquities have inundated me; like a heavy load they are burdensome beyond me. Putrid and rotted are my sores because of my folly. I am bent and bowed exceedingly, all day long in bleakness I go about. For my loins are full of a loathsome affliction and there is no soundness in my flesh. I am faint and crushed exceedingly. I roar from the groaning of my heart. My Lord, before you is all my yearning, my sighing is not concealed from you. My heart is engulfed, my strength has forsaken me; and the light of my eyes, they, too are no longer with me. My friends and companions stand aloof from my affliction, and my close ones stand at a distance.

...continuing with (38:18)...לח:יח
For I am prone to crippling pain, and my ache is always before me.

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

These verses caught my eyes as I was reading the Tehillim by my friend's bedside today in the ICU of Soroka. You can see why these particular verses gave me pause. I was once in that position, and my skin was indeed dead and afflicted. My youngest child was 1, the oldest a mere 8.

There I was, sitting (or standing) beside her, looking at her, holding her hand. She, on a respirator, anesthetized, in a deep sleep. I read Tehillim (psalms), in English this time, so the meaning can sink in on a deeper level. It sure did. I felt deeply that I was beseeching God to save her from more cancer. She's younger than me, her daughter 5 years old.

Just a few short weeks back I was reciting the same tehillim for my other friend who passed away last week.

It's tremendously heavy to be in the ICU watching my friend breathe, her lungs expanding and contracting with the clicks and beeps of the respirator. I actually remember those sounds; they are embedded into deep recesses of my soul. It is all very familiar. Freaked me out a bit, but I just kept praying, saying the psalms, there by her side. I was in trauma-land, and Soroka land, and surgeon land. A very hard place for me to be, personally, but I felt I needed to be there with her. I stayed for a few hours until my Tehillim reading was finished. It took me a long time because of breaks to talk to nurses and doctors about her, and because I was really, deeply connecting with the poetic, but sometimes incomprehensible words and meanings of the text. I did what people had done at my bedside 8 years ago. It awakened my PTSD, but I am stronger now, and I can give without being sucked into the vortex. Hovering around the trauma vortex, however, is not where I want to be. I have to be careful not to fall in, to be too drawn in to her story.

Changing the channel abruptly, the rest of the day was spent at the science museum for children. With me was Azriel, his friend, my friend-in-the-hospital's five year old daughter, and the woman who is temporarily taking care of her. The kids learned, played, laughed. The older ones watched out for the little one. We talked a lot. While we were lazing on the thick, plush grass of the science museum's campus, the woman taking care of our friend's daughter texting with the surgeon, and our friend's brother overseas. Yes, it is the same surgeon. From his texts he seems confident that our friend will get through this, and her situation is not so precarious. I'm not comforted by his confidence.

Walked a lot, talked a lot, prayed a lot.

Tomorrow morning is the neurology clinic at Soroka to take care of the Cannabis paperwork, then I have decided I am going off to the beach. Alone. I need the ocean, and I need time and space to grieve losing two friends a few weeks ago, and to organize my feelings about my other friend's situation. It's been heavy, and I feel a dark cloud hanging over me wherever I turn. Being at the sunny Mediterranean ocean will give me exactly what I need. It always does.

Me & God, we meet there. We always have.