The six week mark

Six weeks is a marking point for post surgery. It's supposed to be markedly improved at this point. I think I've made good progress, actually. I am driving again finally, and it doesn't hurt to drive. I drove the kids and I to the beach last Friday, it was awesome! I went into the Mediterranean and jumped the waves with my kids. The ocean really threw us around a lot, it was hard on my hip, but I did it. I didn't go in a second time, though, after that.

The huge bummer is this: an unexpected complication.... my rebound headaches are back. That's when I take OTC medications too often (more than twice a week, not two days in a row), and it creates headaches after dependency is established. I've been on over-the-counter (OTC) pain medicines every day for the passed 6 weeks- today was the first day I didn't take pain medicine (for my hip). I didn't take it- not because the pain is so much better- but because I spoke with my neurologist yesterday and I told him the frequency of my headaches and that I've been taking lots of OTC meds, and he told me it's rebound headaches. I hadn't realized that before we spoke. I just didn't connect the hip pain medicine with headache medicine. So I have to withdraw now, get off all pain meds. Joy. I had a nasty headache yesterday, and have one today as well, a little less severe, but it tends to get worse with the time of the day. It starts in the afternoon and gets stronger into the night. And I can't take ANYTHING for it. It really stinks. Last time I went through a withdrawal for my OTC medicines I had to be hospitalized the migraines were so bad. Last night I found myself wishing I could get an IV "cocktail" for the headache, but no way am I going to the hospital unless I am absolutely suffering awfully. I waited it out, somehow got to sleep, and woke up without it. But over the course of the day the headache has been creeping up on me. I would normally take Tylenol + Excedrin for this level of headache, but I can't now, it'll just make things drag on and be worse tomorrow (and won't help much if at all. The pain meds I was taking for the hip pain stopped being effective also). My body just rejects, or renders ineffective many medications. I have so many allergies (like anaphylactic shock allergies) and now I am reminded of the rebound headache problem. If I hadn't spoken to my neurologist yesterday (on the phone) I wouldn't have realized that I was setting myself up for this issue. Damn. It's going to be up to a week of this withdrawal from pain meds. I've done it a few times before, indeed I've done much harder withdrawals too (Methadone, Fentanyl after five years on it...), but it really stinks. I have a headache right now from it, and will have one tomorrow, too.

I had called my neurologist because I need my Cannabis licence renewed, and he is the one in charge of that. He needed a recent appointment to show that he is still my doctor, etc. So we did it by phone. He asked me how many headaches I have a month, how much OTC medications am I taking, and that's how this all came to light. Also, one of the pain medicines I was taking for my hip pain has caffeine in it, and that is also very bad for my brain dependency/headache issues. I'm bummed out about this development. I know it will pass though. It's just hard waiting for it to pass.

In other news, I am still emotionally struggling with the age-old question "who am I"? I never had this question before I had NF. I was too busy for that question. Now, I'm not at all busy, although I do plan to go back to the jewelry making job soon, possibly next week. I spoke to the manager today about it. And I haven't played horn yet for six weeks since my surgery. I haven't been up to it yet. I honestly don't even know how I feel about it, I am not chomping at the bit to go play again, I don't have much motivation to do that...or anything really these days. I think surgeries take a lot out of me, because I've been through so damn much these past 13 years. It takes so much time to get myself back. So much, and I'm weary from it all.
You know what? My head hurts too much to keep writing and looking at the screen. I'll end this here. I think I can see why I'm not working these days....

I'll take the flu over migraines...

Nine days. That's how long it's been. Nine days with no migraines or headaches. Seven of those days were with steroid treatment. I was tapering off the steroids for the week, and now (for two days) they are finished. I pray that taking the steroids broke some sort of cycle that was happening of recurring migraines. Nine days. (but who's counting.)

Somehow, though, over this past weekend of Shabbat and the holiday of Shavuot, I came down with some sort of flu or something. It honestly feel like the energy gremlins snuck into my body and stole every molecule of energy that existed. I can barely make it up the stairs in my house I'm so tired. And fevery.

A good friend has mononucleosis at the moment, I am praying I didn't catch it from her. It's pretty contagious, and the incubation period can be a month to six weeks. I did spend time with her at the infectious period of time. I've already had mono, though. I just wonder if my immune system remembers we did this already. I also wonder if being on steroids for a week possibly lowered my immune system and made me more susceptible to catching a "bug" or something? I definitely have some sort of flu. I feel so sick, my body just feels so defeated and weak.

It's been a long, hard run of months here.

I had a plan to go to the beach today, the kids have off from school, and it's a well known beach time. But not with how I feel. One of my kids went to the beach with friends of ours, the others stayed home. I *really really* wanted the beach. I need the sun and the air. I need the power of the Mediterranean sea, I need the beach. It'll happen. Just not today. Unfortunately, Robert is feeling sick, too. Uh-oh.

Low-key is the name of our present life. Gotta keep it all low-key.

School is almost over, and we hope to go to the US in the beginning of July.

I can't make any plans from one day to the next. A friend called today to see when we can make a date to go out together. We through some dates into the air, and it ended with how making appointments usually ends when I am involved... "let's talk the day before, hopefully that will work out."

Sometimes I really do talk to Gd and say "hey, look... haven't I paid plenty of dues? What is it that you want me to be doing that I am not learning? Give me a break... pick on someone else much more deserving."

But you know what? I immediately realize that all of our trials in life are tailor made just for us. I don't know why I seem to get so many more than other people, but maybe I just don't know their lives intimately enough to see their trials. Then I usually come to gratitude. I have been the receiver of immeasurable, priceless gifts. So many gifts have been sent our way which many people who Hashem loves have not received. I realize that and I remind Hashem that I am grateful. So, so grateful.

I just wish I didn't feel sick while telling Him I am grateful. I'd love to run around in the ocean waves and show Him my love. I'd love to see beautiful sunsets on a lake while telling Him I am grateful, and thanking Him for everything. So, I'll do it from my bed. I may have the flu or something, but I am still grateful. At the very least I am grateful for nine days without a migraine. At the very most; boundary-less gratitude.

But having good health would help. I'll get there.

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.

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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.

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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.

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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.

Bedside Tehillim (Psalms)

ב"ה

תהלים

From the book of Psalms 

(יב through) לח:ד

38:4-12

"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.

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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.

Let Go and Let God- the Mediterranean ocean today

So much nice life has happened since I had the opportunity not to have surgery last week. We had a beautiful holiday together (Shavuot), and I even walked late at night to go to Torah classes. I also got to shul the next morning... all by foot. Baruch Hashem. Everything can be turned around as a blessing in disguise. I truly believe that... everything.
Today we spent some awesome time at the beach! We (just me with Shifra and Azriel) went to meet up with friends who were already there. See?

From Left to right: 3-year-old Sar'El Quinn, Azriel, 8-year-old Adiyah Quinn, and Shifra (strike a pose).

playing ball on the beach

selfie. :)

The secretary of the orthopedic department called me today, offering me an earlier surgery date because someone cancelled. 

I thought about it for a few seconds, then took it. I still want earlier rather than later, taking into account that I want to be healed fairly well to do family outings in August. Together with that, the date of the 17th (did I tell you that is the new date?) happens to be Ya'akov's graduation from junior high ceremony. Not good timing. He'd be very sad if one of us wasn't there. So, I took the 10th. A few seconds after that, Robert reminded me about Shifra's dance recital. That is the 12th. She has been talking about it non-stop, and would quite likely crumble into a heap of dust of I told her I won't be there (the hospital said it's a two night stay, not one.) Graduation or dance recital? Sarah's choice. Well, it wasn't actually a hard choice (yes, it is, Sarah)... Shifra really really wants me at the recital, and the graduation isn't so important to Ya'akov... except that I know it is. I did wind up calling the secretary back to restore the later date of the 17th. I am not at peace with it, but neither one is a great choice. So, as I already said that all disappointments are a blessing in disguise, I have to have faith that I am doing the right thing. Ya'akov's graduation is exactly *on* the 17th, the day of surgery. I can't imagine waking up from surgery and not having Robert there, even if a close friend took his place. I need him there. Well, "need"... I know I'd get by without him as long as a close friend was there, but he's my husband. You know what I mean, right? But I feel awful about keeping him from Ya'akov's graduation. So what, nobody will be with Ya'akov? Or a stand-in will be with him? Neither scenario works well. Hmmmmm, now I am thinking of taking the date of the 10th again (if it is still available). Shifra's recital is one day after I'd get home from surgery. That is insane for me to go out of the house, wheelchair or not. I don't want to risk infection. I know that in the scheme of life, each kid would get over their disappointments, and build character through it, but I don't want to disappoint them for either of these things. There are enough character building experiences in life. I want to build them up, and I have to disappoint them time and time again because of my health, since I got NF.

Mothering the kids through all this makes them different. They know what their mother has been through, and it's not easy for them to accept my limitations. Each kid has their own way of dealing with it, but it has been a very rough road for them. My book will go into detail about this, of course.I mean, this is not, by far, the first time they would be let down because I am sick, or recovering from surgery. There is a long line of disappointments. I know every kid (and every person, for that matter) has to deal with disappointments, but that knowledge doesn't make me feel any better. It happens very often for them. I also know that I do so much great stuff for and with them, and I am not discounting that. (For example, refer to above pictures. I am presently in heavy pain for being at the beach.... but I did it for them, and for me. I *need* the beach sometimes. It's where I "let go and let God". I spent a lot of time in the water today, which was awesome, but the strong Mediterranean undertow and high waves made my hips and whole body work hard while I was thrashed around, playing with the kids. It hurts so. much. now. 

Entire thigh joint and pelvis, both sides equally, that is how bad it is. It is actually getting worse as the evening continues. Tonight, I'll only be able to sleep after taking a sleeping pill. Too much pain to fall asleep naturally.)I keep going back and forth with this decision (which there may not even be, if the earlier date was given away already). I just gotta use my faith here to guide me.If the surgery *was* on the 10th, and Shif's recital is on the 12th, Robert could go to the recital. *But*, if the surgery is on the 17th, there is [almost] no way for Robert to be at Ya'akov's school graduation. So, are we going for the 10th now?I'll sleep on it. If I can sleep, that is. I hurt so much, each tiny movement in bed catches my breath because of the searing pain. Next time I go to the beach, I should stay at the shallow place where the ocean starts. But that is so hard for me, I LOVE going out to the waves! Maybe after this surgery, I will again be able to have a day at the beach and not be in agony afterward. And so we pray.

Please God the pain and inflammation will be better tomorrow, and we'll have a nice Shabbat together. I hope to make it out to go to friend's for Shabbat lunch.

Shabbat Shalom!