New bionic hip next week!

Remember in my last blog I said I was going to the orthopedist the next day?

Yah, well, he looked at my x-rays and asked me what I take for pain. I told him nothing, except the random Percocet here and there when it gets bad. He couldn't believe I was walking without a walker, according to my x-ray it should be too painful to use my hip.

Then he says he has an opening in his surgical schedule next week! Aaaaack! I wasn't expecting that. But I took the opening. I've been in pain for so long, here is the opportunity to fix it. I just have to take what little time I have to get used to the idea and get myself ready physically and emotionally. It could be good this way, I have less time to worry about it, just jump in and get it done.

It will be at the private hospital here in Be'er Sheva, Assuta, with my private insurance paying for it. And the good thing is that they have no Corona patients because it is a private hospital. Until the public hospital (Soroka) is full, they won't use the private hospital for Corona patients, so that is one good thing about going private.

The orthopedic surgeon told me that the other day he put a new hip into a 90 year old, and two hours after surgery he was up and walking, and later that day he went home. I told him about all the stairs in our house, and I might want to stay the night just to make sure things are ok, he said no problem.

I can't *believe* I'm going in for another surgery less than a year from my last one- the reconstruction surgery- (it's been 10 months). I can't believe I'm going in for another surgery at all. I mean, I knew this was going to have to happen, I knew last summer's big surgery wasn't going to be my last ever (even though people blessed me that it would be my last surgery ever). I have two bum hips and a bum knee. Sometimes, when I'm going up or down the stairs, I wonder which hurts more, my knee or my hip. The doctor said he'd give me a shot of cortisone for my knee while I'm under. Hopefully that will help some.

We are still putting Humpty Dumpty back together again. My right hip is bad because of all the surgeries I've had on my left side, and all the limping I've had to do over the years, favoring the left, it destroyed the right hip. The surgery I had to fix it without hip replacement was not quite five years ago, and at the time, the orthopedist (not the same one who is doing my surgery now) said that he feels he bought me another five years before I'd need a total hip replacement. And....here we are.

The surgeon who is doing this is a complete specialist in joint replacement; people come from all over the country to have him do their surgeries (Dr. Benkovitch). I feel good with him. I just can't believe I'm doing this. Another surgery. Like I said, I knew I'd need this, but, well, ...here it is upon me, next Tuesday (5/5/20).

This will be my fourth hip surgery. Fourth, yup. Two on my left hip for the PVNS tumors (a year after NF), one on my right hip almost five years ago to try to minimize the pain. So it's not new to me, but that isn't comforting. I know how much it hurts. But having a new hip put in, that is supposed to be less painful, please G-d.

So, how do I feel about this? So many mixed feelings, heart and logic are at odds with each other. Logic is clear: it's time, I'm in pain, he magically had an opening coming up very soon, I am strong and healthy, it's a good time to do this.

Heart: Exploring why my body keeps falling apart. I mean, this is a genetic problem, also, my dad (z"l) had bad hips, one of them was replaced. But I have been through *So Much*. And I believe this is not my last surgery...like I said, the other hip is going to go at some point, and I don't yet know what's up with my left knee. OK, but that's not the heart talking.

I am scared of yet another surgery. I am not as scared of the surgery as I am of the post-op infections...that's my worry, as we know. He's putting a foreign body into me, and it is worrisome. I know he does this every day of his life, and his ratings are very high. But these things happen....as we know.

I am not unfamiliar with the psychological profession's opinion of possibly why my body falls apart, and that my abuse memories only came back to me when I had the NF trauma. They were put away in a neat little box with the top tightly put on for most of my younger life. When I got NF I was 39, that is when all the memories of childhood sexual abuse came rolling back into my life. One can say that keeping it bottled up for so long and not dealing with it took it's toll on my body, but what about now? I am dealing with the trauma, in therapy. So this hip stuff is just wear and tear? But I'm only 52.... my Dad was about 80 when he had his hip replaced. I don't know, it's a complicated package, this Sarah package.

One thing is that because of the Corona virus lock-down, all my family will be home- even Dov said he hopes to come home from the army because of the surgery. And we'll also have his lovely wife of course, so I have a good support network for when I come home afterward. I won't be driving for a month, but my daughter just got her licence, so she can drive me anywhere I have to go. She's very happy about that.

Well, we're doing this next Tuesday. Getting a brand new bionic hip. Please G-d it's the right thing at the right time. All we can do is make informed decisions and hope they are blessed by G-d.

(oh, did I mention that this is the anniversary time period of when I got NF? I know I mentioned it last blog. May 2nd is when I was in the hospital, blood pressure dangerously low, surgery for NF, coma, skin graft surgery, month in hospital, etc... that was all in this time period, now 13 years ago. So here is my next chance at Tikun- rectification of an event in life. It's all about tikun, isn't it? Fixing what is wrong in the world? Still, though, the timing is a little freaky for me.)

Sarah Rachel bat Tova

The present, the past, and the passed (away)...

I don't want to tempt the evil eye here, but it's looking like I may be over the hardest part of this weaning process. I did have to go back to the hospital on Saturday night, with a killer migraine, though. That was the last migraine I've had (but it's only Tuesday). I had to go to the ER because I had no medicines to help with the migraine. It got really, really bad again Saturday night. This time, there was a neurologist on duty in the ER, and he made a plan about how to "break the cycle" of migraines and rebound headaches. They gave me a choice to be hospitalized again, but I didn't need that, they gave me what I needed to stop the pain. More importantly, I have some meds to deal with it if it happens again. They aren't great medicines for me, but it'll get the pain down without putting the medicines into my body that I just got off of. We still have a lot to do to figure out if there is a known cause of the migraines, but whether or not we figure that out, the fact remains that I have to manage them when they happen. I'll see my neurologist next week, and probably have an MRI... which could take a while in this country.

Currently, we're counting two and a half days with no headache.

To make matters a little more (but not terribly more) complicated, the company which is supposed to deliver my medicinal Cannabis messed up my order, and I am now completely out of CBD until next week, if I want it delivered to my house. I can get it earlier if I want to travel into Tel Aviv to get it, but of course, that could very well cause a migraine (especially in the present heat wave- high yesterday hit 111F!!). So, now I get to see if I have a withdrawal from *that*. So far, I haven't. Interesting, right? I just had to stop taking it, cold turkey since Sunday, and no withdrawal symptoms. I don't know where I stand on the whole issue of the Cannabis.... it never helped my headaches, and I felt that I am just needlessly putting another medicine into my body which I have to keep up with and spend money on. And my body is so clearly telling me to get off everything, I have allergies to a ton of medicines. I actually need two red bracelets when I am in the hospital because one doesn't have enough space for all my allergies. I feel that I need to try to clear my system of it all. It's NINE years now since I had NF. Now is the anniversary. I've been on and off many, many medicines over these years. I feel that it would be not just a physical freedom to be off of them, but an emotional one, also. In a big way. That is, at least as many of them that are wise to get off of. So do I need the Cannabis? I haven't gotten off sleeping pills yet, that is my next hurdle (but not at least for a few months. I am hardly stable yet from the migraines). Maybe it'd be good to have the Cannabis to help that weaning, but then, well... then I am on Cannabis. But maybe Cannabis can be the absolute last thing I'll go off of? Question is, how much is it helping me? It's the first time I've ever gone off a medicine cold-turkey and not had a withdrawal. I was on it for about a month. Well, I'll get the delivery on Monday. I'll take it for the next month. One thing at a time. It does help me sleep, actually.

Thanks for thinking this all out with me. I'm getting there.

I'm getting there.

Next Thursday is the anniversary of when I woke up from the coma. It's the holiday of “Lag b'Omer”, traditionally for me a day mixed with gratitude, sorrow, pain, and yes, trauma. All I have to do is picture me back there, and picture how it felt when I first saw my body after NF ravaged it, and hundreds of different flashbacks come flooding in. I choose not to dwell on them, and am grateful that I have that choice now. One cannot always choose when to open the gate to trauma and when to keep it closed. I worked hard for that choice.

This year I have a special event that will help change the face of the holiday for me... the Elton John concert! The gift from so many of my friends who have seen me through all this, through thick and thin... it is no coincidence that it is on Lag B'omer. It's another “tikun”... a repair for the damage done in the past.

(did I tell you that my friends also collected enough for a pre-concert dinner? I am sooooo excited!!!)

And also no coincidence, the concert is after my neurologist appointment, on the same day. Please Gd, my brain nerves will cooperate with my plans for the day.

It's all good. It's all about repair.

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

Update, on Wednesday:

Headache.

First major-ish one since Saturday night. I took the steroids that hopefully will help soon, and I have another line of pain management as well, but not ideal for me.

I had the beginnings of this headache yesterday, but it didn't grow bigger... I didn't take anything for it, and used my meditation recording to go to sleep. Tonight it grew bigger. :(

Not at epic levels, but it makes me so nervous, which of course makes pain higher.

This update also includes some very sad news: Robert's aunt, who was really an aunt to us all, passed away this morning. She had been sick, and we expected it was going to happen, and she went quietly in her sleep, at the ripe old age of one-month-short-of-her-90th-birthday. We were planning a trip to NY to celebrate her 90th birthday with her next month.

Now Robert is on his way to the US for her funeral. His aunt Ahuvah (his mother's sister) was a very major part of the family. In many ways a matriarch, although she never had kids of her own. My kids are very sad about her passing, and that they hadn't seen her for over two years (except Shifra & I, who saw her when we were in America in August). She is the last one of her immediate family.

Tonight, as we were walking the dog, Azriel asked me "what if, Gd forbid, you get sick while abba is gone?" It was a poignant question. Just last week I was in the hospital. My unspoken words were that I am nervous of that, too. They depend on Robert for the backbone of the family. I can very much be that, also, but things are much more fragile with me. Let's hope things will be stable. I am strengthened knowing I have a tremendous loving, caring community, and many friends surrounding me. Everything's going to be OK. Whatever OK means at any given moment.

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.

One neurologist can turn it all around

Wow, talk about tikun (תיקון). That word- tikun- is a very important word for me. It is a Hebrew word; a concept. It's a philosophical concept as well as a spiritual one. I could link a Wikipedia article explaining it, but that wouldn't really do it justice. Simply put, the meaning of life is for the service of tikun. It's the concept that we are here to fix the spiritual flaws in the world. There, now you know that I know the meaning of life. :)

I go into it quite a bit deeper in my book, so I'm not going to delve into it here. I want to use this space today to tell you about what happened at the neurologist appointment I had this morning.

This appointment was a follow-up for the migraine evaluation. It took many months to get this appointment; this particular doctor is in high demand. I started having powerful, intensely painful, immobilizing migraines after I recovered from NF. I had a normal MRI & head CT (thank Gd). Over the past year, I decided to get the migraine situation evaluated to see if anything can be done, I was given a few different medicinal options, but none of them worked consistently.

What happened at this appointment is an exact tikun to what happened at my orthopedist appointment; written up in my last post.

The orthopedist and the neurologist, in essence, said the same things, but I walked out of the orthopedist in tears and feeling defeated with no hope, and from the neurologist appointment with optimism and an entirely new approach to my chronic pain. I did cry while sitting with the neurologist, but it was tears of HOPE.

I have so much to tell you, I don't know where to start.

I'll do a little juxtaposition here, so you can understand by example.

Orthopedist: You have a very low pain tolerance, and you take narcotics for a problem that should not need any pain killers. No other patients who have this problem take narcotics. You take too many medications, making surgery and general anesthesia are too dangerous for you. I am not going to treat you anymore. [what I heard: you are a hypochondriac and a nut case who wants more and more narcotic medicines, and I am not having any part of it].
Do physical therapy for your problems. There are no solutions.

Neurologist: People who go through heavy medical traumas often have a heightened sense of pain. It is a reaction of the nervous system after an experience like you had, where the body went into shock.
We all search for a way out of pain, it is a natural human reaction. Opiates can help us find relief from pain. The problem is that they also lower the overall pain tolerance. That, in turn, causes us to use higher doses of the opiate. It is a viscous cycle.

Post-traumatic stress disorder on the level you suffered also takes it's toll on the nervous system and raises the level of chronic pain, as well as a myriad of other possibilities, including migraines.

Your body and nervous system, along with psychological issues, must be treated together.

Therefore, here is what I purpose:

1. Wean off the Fentanyl, it is destructive to your overall healing. (He was so pleased that I am on that path already).

2. I am setting you up with my best physical therapist so we can get you moving- really moving-again. This particular physical therapist is someone I work with and knows my methods. It is a woman, also, if that is an issue. (the doctor is religious, also, as I noticed because he wears a kippa) The sessions will be here in Soroka, unless it is too much of a trigger for you to be here. We can do another venue if you need. (I can't describe the emotions I have about him saying this- someone who *completely understands* what post-trauma is about. It is nothing short of a Godsend. Fortunately, I am fine with having appointments in Soroka, as long as I don't have to go near the surgical ward "A".)

3. Along with the physical therapy, I am writing a referral for hydrotherapy. Are you OK with pools and water? (what a question, right? I am a Pisces!! Pour it on!).

4. After a period of time, to be suggested by the physical therapist, I'd like to you join a walking group here in Soroka. Walking is not only for the body, it's also for spiritual well being. (remember- this is a neurologist here...) We have daily walking groups lead by a physical therapist in my program.

4. I run a group meditation course. The goal is to be able to self meditate to overcome pain, including when you feel a migraine coming on. It is 8 sessions of two hours each, and it is a very specialized program which I built. It works. You'll have to practice three times a day to incorporate the method. You'll have a recording, and eventually you won't need to listen to it. I want you to join my next group forming at the end of this month.

5. Since you take psychiatric medicine and have no psychiatrist at the moment [I haven't had a psychiatric follow-up in years. I don't like the person I had so I stopped going], I'd like you also to have therapy sessions with a "medical psychiatrist"- a psychiatrist who is trained to specifically help patients who have had medical traumas. There is a long wait for these practitioners, so I can't get you in until June. In the meantime, you will be doing these other things, and you will be able to start real healing.

----are you, my dear reader, crying yet? Wait- there is more.----

I then told him about Dr. Davidson, that not only am I lowering the dose of the Fentanyl, but the plan is to go on a new medicine for the pain.
Firstly, he knows Davidson very well, turns out they are good friends from when this neurologist worked in the same hospital as Davidson does now (Hadassa Ein Karem).
Secondly, he is completely on board with the new medicine plan. I am going to share that with you now. I have been waiting for the right time, and I know that the time is now.

I will be starting to use medicinal Cannabis.

There is a lot I want to say about it. I want to tell you that researchers and developers working with the Cannabis plant have isolated the chemical that causes the familiar "high" that people think of when they think of Cannabis, and have been able to remove it, in large portion, from the medicinal Cannabis. That means that one can get the pain control benefit, without the "high". This is an incredible development because the high prevents one from driving, and in general can change a person's reactions and general functional abilities. I am going to be taking it in the form of oil drops, no need to smoke.

Dr. Davidson actually suggested it to me four years ago when I first saw him. At the time, I couldn't let in the idea of taking any sort of narcotic, or anything that has dependency and/or addiction possibilities. Shortly thereafter I started seeing Dr. Z (my other current pain doctor) and started on Methadone. From there, as you know, it was long months and years of experimentation to try to control the pain. The Fentanyl, at varying doses, and it's side effects, has been my constant companion for 3 years.

I want to tell you that I am very nervous about starting Cannabis. It is not like Fentanyl, or any other medicine, in that the dosage is arbitrary, and one has to sort of experiment until the desired pain control is achieved. I am afraid of Cannabis in general. (I wasn't afraid in college, but that is for another book. :) I am afraid that I'll be in pain for too long with no way to control it.

I want to tell you that I am afraid of the stigma that medical Cannabis has, and how you are going to react to me. I am afraid of judgement, although I know it doesn't matter what anyone else thinks of it.

Lastly, I want to tell you that I am *optimistic* after this amazing appointment today. Can you believe it? When was the last time you heard me say I am optimistic about the future of my health situation?

Tikun is an awesome, phenomenal experience when one experiences it in day-to-day living. What I mean is that usually these kinds of things, experiences that have undertones and overtones of being a witness to the repair of the spiritual universe, aren't available to a regular person like me every day.

Almost every hurtful thing my orthopedist said to me, was turned around today by the neurologist.

• "You have a low pain tolerance" = heavy medical traumas, and opiates, have the effect of heightening pain.
• "go do physical therapy" = we're going to get your body moving with very talented physical therapists and a specific program to get you back to health. Eventually you will be going on long walks.
• "You take too much [unnecessary] medicine" = reducing the Fentanyl will be beneficial for your body. It is possible that you experience more pain because of it. It's great that you already started the process.

The last thing he said to me, at the end of the appointment, was
"I want to know you are playing your horn again by the time we finish here".

Are you crying yet?

Mania cannot cloud the Real Purpose of life.

Gardening, cleaning, laundry, painting walls, hanging pictures, hand laundry, mending clothes, cooking, shopping for children's and household needs, and endless organizing.

Trying to control outside because I feel so chaotic inside.

Even though my mistake of when the surgery was supposed to be, bought me a few more weeks, it didn't help calm my nerves. I mean, anyone going in for surgery would be nervous. But, me? Just imagine. Actually, you can't. Nobody can imagine anyone else's emotions. In my case, though, I feel even more removed from most people's experiences because most people haven't had any of my experiences.

Sometimes, when I am walking on a leg so sore that each step becomes a concious decision, or when I crawl into bed at night with a pelvis hurting so much that I can hardly move, I am grateful that I decided to do the surgery and fix what can be fixed in there. Our electrician recently had shoulder surgery. He came the other day to do a job for us, and I asked hom how his shoulder is. He responded that it is great. No pain, working well. He asked me why I seemed surprised... he said "you do surgeries to fix things that hurt, then they don't hurt anymore". "True", I said to him (he doesn't know my story). "Yeah", I said to myself, "keep that message as truth". Surgeries are to fix things, and one can come out with less pain and the problem fixed. That is the goal.

It is just scary when one shoots for the goal, and misses. I know of so many stories, and so do you (well, you know my story, and I'm sure others as well).

So, the "mania" of doingdoingdoingdoing things, ending up over exhausted and in pain, unable to sleep until 2 or 3 am is what has been happening these past few weeks. Yesterday I had a low-level migraine, and my babysitter did, too! She didn't come, and I had a frenetic, frustrating day with driving, shopping, and kids. Each of those three things challenged me to the frustrating maximum. By the end of the day, with my body, also, challenging me in many more ways than pain, I had *nothing* to give to my last child to go to bed. Thankfully by then Robert was home, and he took over getting her to bed.

There was one completely awesome, Godly moment that happened yesterday that I hold in my heart as the reason yesterday was hard. I had the opportunity to do a REAL "tikkun", which is Hebrew for the concept of fixing the wrongs of history. History can, and does, repeat itself. That is true of parenting, also. Yesterday, I got the gift of fixing my own history. I was thrown into an exact replica of what I experienced... exact... and I got to fix it. And I did. And therein lies hope. (The concepts of tikkun and faith are THE central themes in my book, weaving understanding, sense and wit throughout my story of medical trauma).

Maybe that's why I got the gift of rest today. I am quite sure that Tikun Olam, the concept of correcting the world, *is* why I was thrown into this chaotic and traumatic road of being a survivor of NF. It has been an invitation.

Yesterday I got sucked into a traumatic day, and was given the gift of doing a tikun with one of my children.
Today I got to rest. The Maker of the Universe gave me a day off (Robert was supposed to be out-of-town today, it got canceled, and my babysitter already told me she couldn't come...). Is it because of recognising the importance of snatching the moment to do a tikkun? Maybe. I know that that moment yesterday, when I decided to apologize to my son and tell him about this tikkun, it was when things turned around. He loostened up, and it was a relief.

I connected with God yesterday, and I did His work. *That* was yesterday's purpose, and through all the frenetic frustrations the day carried, nothing else matters except that tikkun.

Thank God.