Sunday, August 30, 2015

Strength in challenges, and challenging strength.

I've been spending lots of time in the hospital with my friend- the one who was in ICU for six weeks. She is now out of ICU, and getting stronger by the day. It is nothing short of a miracle. She almost died more than a few times, and now she is healing. She still has a long way to go, but she will get home, with help. I try to go to her every day, but it doesn't always happen. It's going to be a busy week.....

I am feeling so strong these days, I feel my own miracle. I haven't felt this strong since I had NF, I think. Being off the narcotic pain meds (after six years) has changed the quality of my life many-fold. I am stronger, and not as sleepy. My digestive system is awake and working properly, and that is such a gift, you probably can't imagine. I can handle the days better. Even the jet lag wasn't as severe this time.

It's the first time since I got sick that I am not on any pain medicines. Do I have stronger pain? YES. Can I work on myself to appreciate feeling strong while dealing with pain? So far, the answer is yes. I will not go back there, to narcotic-land. I've had a taste of freedom and I like it. I even have my new licence for cannabis, all I have to do is take a trip to Tel Aviv once, and thereafter they would deliver the stuff directly to my house. But, after the two week trip to the US which we just did, I decided not to pursue that route. I want to be off medicines, [almost] at any cost. I made it through difficult days traveling, and the entire vacation without pain relief. I don't want to be reliant on drugs. It's there, though, if I change my mind.

Now, what to do about the pain? It remains the most difficult aspect of my life. 24/7 I feel all different kinds of pain: from my right thigh problem, from Gapey (I still have trouble with the pins that are holding the mesh behind Gapey), nerve pain, left thigh joint pain, and recently dealing with a bad rash around Gapey as well. The rash is because I have to wear the pressure garment every day... it is for controlling the lymph-edema. Also since it has a pocket for the prosthetic pillow, I am more comfortable in my clothes with the pillow filling in the concave hole which is Gapey. But, it is awful in the summer. It is nylon. And tight. Makes me crazy, you can't even imagine. But if I try to do a day without it, the lymph-edema pain comes right back, and I wind up swollen. Problem is that the skin around Gapey is very sensitive, and a bit of sweat can cause a heat rash. This nylon is not absorbent. The rash does not go away with anti-fungal cream. It is soothed with tea-tree oil spray, and that is what I use for the time being, but that doesn't take it away, just calms down the inflammation/irritation. I put soft cotton around Gapey in the pressure garment; it's a whole procedure. It takes longer for me to get redressed and organized with the cotton and whatnot after using the bathroom. Oh well, compared to my friend in the hospital (who is going to have a MUCH bigger Gapey) what I am dealing with is small.

Having said that, I'll tell you about what is up for me this week.

I am doing an MRA test on Monday. It differs from an MRI in that contrast dye is injected directly into the artery of the joint, and I won't be able to walk for a while. It's very un-fun and last time I had it (two years ago) it left me in strong pain for a few days thereafter. The good news is that it is being done in the one private hospital right here in Be'er Sheva (*not* Soroka). The bad news is that neither the national health fund nor our private insurance will cover the cost. I have been trying for weeks to appeal and get them to cover it. It's an expensive test- over 5,500 shekels ($1,200 US). After discussing it at length with Robert, and considering the other options which the health fund *would* cover, we decided to go for this time-and-place on Monday in Be'er Sheva. There are only four hospitals in the country that do this particular test, and I have called them all and faxed all of them my referral. The closest dates they have are in January. That would mean, if I wait to get this test until January, I won't be able to do the surgery until afterward. That is a *long* time away. Remember, I am not on pain killers, and this is quite painful. The sooner I have this test to bring to my new orthopedist (also private, but my private health insurance will cover that surgery), the sooner I can do the surgery, heal, and please Gd eliminate that source of pain. Bilateral hip pain is the PITS.

The very next day, Tuesday, hoping I am in decent shape, I am supposed to go into Tel Aviv to Ichilov hospital for my follow-up for PVNS. I think I am the only person in the world (well, maybe not the whole world, but you know what I mean) who has two different doctors for two different legs. The left is orthopedic oncology, the right thigh joint is straight-forward orthopedics. How did life get this complex? Well, yeah, we know the answer. But I will reiterate, I am, at this point in my life, after having gone through the h*llish withdrawal from Fentanyl for 10 months, the strongest physically and emotionally I have been since I got sick 8 years ago. Thank the Good Lord.

So it's looking like surgery will be in the next month or so. It depends on the surgeon's schedule. I want to get it over with already. Remember, this is the surgery that I had to put off last summer when I turned into a tomato on the operating table seconds before I was put to sleep for the surgery. I upped the Fentanyl at that point because my orthopedist "fired" me for being too high risk. I needed to cope with the pain. Then I had the cellulitis hospitalization which happened after the allergy testing for antibiotics. That was a crazy time. I think this may be the first time in 8 years that a whole year has passed without me having an infection or hospitalization. Did I tell you yet how strong I have been feeling? :)

OK, gotta get to sleep. I have a teenager in angst about starting her new junior high tomorrow. Had a long heart-to-heart with her and she went to sleep feeling good and confident. I love that. I love that I am a stay-at-home mom for my kids. Even when I'm sick or recovering from surgery, I am here, at home. It means the world to the kids, and to me. Having said that, I am looking forward to school starting and reclaiming my days and starting to play horn seriously again. I want to take up the offer my orchestra partner put on the table; that being, as soon as I am ready, he has work for me. I want to get my feet wet again with my music, I miss it so much, I ache to play again. I don't know if I can get to the level of professionalism I used to have, but I am planning on starting to practice with a goal. Pain is sometimes in the way, though. That is why I can't work. I'll take this one day at a time. Working and having surgery don't go together. That's why I get disability payments every month, because I can't work. But I am determined to try. I miss that aspect of myself... it's a huge part of my life that was cut away with Gapey. While I cannot regain the losses of having had NF, I hope to regain being an orchestra (or chamber music) musician.

As far as my doula work, that must remain on hold. It is too challenging to be the person that people will rely on. It is too physically draining, and I have too many physical restraints stopping me from doing a good job. Helping out my friend in the hospital is like being a doula. Now that she is awake and aware, no longer in ICU, she needs lots of emotional support. Each time I am there with her I massage her feet, and speak soothing words, much like I did with pregnant women. I need to give, it is in my nature. I am searching for balance, and am creating a plan about how to achieve that. With Gd's help.

Good night, a new week is around the corner. Let's pray I feel as strong at the end of it as I do now.

Please continue praying for my friend, Shoshana Chaya Bat Bassie. She is getting stronger, but is not out of the woods.

May this week bring health, strength, and loving kindness to all of us!!

Sunday, August 23, 2015

A photo journal of a special vacation

On the plane, before take-off to New York, via Istanbul...
Since I've had a bit of writer's block recently, I decided to do some photo-journalism about our trip to New York over the past two weeks. It was a wonderful trip, and we are gratefully back home now in Israel. It may not be as lush and majestic as the beauty of the part of Long Island where I grew up (North Shore, Nassau county), but, as it is written in the song "Eishet Chayil" (words in Hebrew, English transliteration, and English here), "Grace is deceitful, and beauty is vain; but a woman that has a reverential awe of the Lord shall be praised." What does that mean to me? It means that beauty and grace are misleading... that spirituality is what we are striving for. That is the difference in the types of beauty I am describing. I really feel that Hashem gave an extra dose of splendor to the land of Israel, beyond the breathtaking beauty of many other countries of the world.

My own Eishet Chayil, my mom.
me & my mom, circa 1977
My Dad and Shifra with the "Ben's Kosher Deli" guy...

Shifra with grandma and grandpa. (but who's??)

The nuclear family, My father, my mother, me and my two brothers.
Me, my brother peter in the middle, my other brother Tom on the right.
(I'm the youngest.)

Thursday, August 13, 2015


Writing to you from my parent's house in Glen Head, Long Island, New York. :)
That is one good reason why you haven't heard from me in a while.

Well, actually, that is the whole reason. It's really been busy, but mostly in a good way. I am traveling with an awesome travel buddy, my daughter Shifra. It's her Bat Mitzvah trip. She wanted to see grandma and grandpa. Just the girls... left all the men in Israel. Robert is taking the boys on trips and vacation spots while we are here, so everyone has their vacations. Just not together. I think this is the first summer in... ever... that we didn't do a vacation together. Ah well, things change. It's the nature of things.

There is an ongoing theme whenever I come here to visit my parents. That theme is that a zillion family and friends want a piece of me being here, on the same hemisphere as them. I get that, and I want to see people, too. But my heart feels torn and spread thin, between visits with relatives who I love and my parents who the trip is in honor of. This trip is also mixed up with what Shifra wants from her special vacation. There is a lot to do, and important things to take care of, and when I am spending time with my parents I don' want to make the phone calls, I just want to be with them.

This evening I was talking to my brother-in-law on the phone. We had spoken at length, and I told him that I wanted to get off the phone so I could say goodnight to my parents, the whole evening went by with me making up for missed phone calls. I also told him that I wanted to check in on Shifra, I had no idea what she was into for the past hours, and I have to make sure she's getting to bed soon. As soon as I said those things, I remembered that Robert and his brothers have no parents anymore. They both left this world. And, this brother-in-law I was talking to has no kids. I decided to shut my mouth and be deeply grateful. Just gratitude.

My parents are pretty stable. Not getting worse, but also not getting better. This is how it's going to be... them living in this house, until it changes... like things do. I'd like to bring them to Israel. That is what would make everyone happy (my family/kids in Israel, I mean). We have had some important conversations about it. My brothers (both) are coming in from Manhattan and Indiana this weekend, so that is wonderful. Hopefully more positive and important conversations will happen.

In general it's been very little shopping (by design), a handful of cousins and my Aunt on my father's side, my brother treating us to a Broadway show which was *awesome!!!*, and a handful of phone conversations with people who are enjoying being able to speak with me while I'm in the same time zone.

I honestly can't stay up anymore. I keep falling asleep.

I am doing well, holding up to the pressures and busyness, thank Gd. Pain factor is higher than I expected, but I have been handling it, and for the most part, trying not to talk about it.

Getting back to Israel next week on Wednesday, the 19th.

Good night! You may not hear from me in a while. It's busy! But good. All good. Well, mostly good. ;)

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!