Thursday, December 4, 2014

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?

50 comments :

  1. Hi, Sarah,

    Funny, I was just listening to a podcast yesterday, and thinking that it might prove helpful to you: http://drdrew.com/151/ . Among other things (e.g. the futility of using opiates for chronic pain), it mentions treating PTSD with a technique called EMDR. Perhaps you can find out if your neurologist is familiar with it, or get a recommendation from the medical psychiatrist? Best wishes,

    --Lee

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    1. Thanks, Lee. Actually, I did do some EMDR treatments a few years ago, with large success. It helped with some specific memories that kept coming back to haunt me. It is an awesome technique.
      Thanks for the podcast... I love listening to podcasts, I'll plug this one right in. :)

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  2. This sounds so positive. I'm happy for you.
    Tamar

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  3. One more link that is referred to in the above podcast: http://www.fsaprotocol.com/pain-release-technique.html -- the first PDF there has a full workbook, and the second PDF is just a slight revision to pages 12-13 in the first. Be sure to read the warnings in the workbook. Hope this helps!

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  4. I have goosebumps (and yes, tears). So awesome. As for cannabis, I think we have a lot to learn about it and I really hope it helps you.

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  5. Sarah, this was great to read, I am so glad to hear that this neurologist is actually helping! On the list that I am on for the jaw pain disease that I have (trigeminal neuralgia) there are several people that use cannabis and say that it really helps with their pain. It's also nerve pain like I think you experience a lot of it, so that gives me more reason to hope that this will work for you. (Aimee from Oct98)

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    1. Woow Aimee, I didn't know you had this problem. I looked it up, and.... Ow! Do you do anything to help the pain? Sorry for you, sounds so unpleasant, to say the least.
      We'll we'll let ya know how it goes! I have been hearing so many people telling me now about other ppl they know on Cannabis for all sorts of different problems. The more I learn about it, the more I need to learn.
      I wish for you all the best, and I hope you can have relief from the jaw pain.

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    2. Thanks - it is definitely a pain (literally!) Right now things are early and I can control it with carbamazepine (epileptic drug, slows down nerve impulses). But it only gets worse over time, thus some of the people on the forum have tried many other types of relief. There is also a surgery that can fix it, but it's a brain surgery and not 100% guaranteed to fix the problem. So I'm taking it one day at a time; for now the pain is controlled enough. I hope you are able to find something, whether cannabis or anything else, that helps!

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  6. It seems to make sense after reading this: Why even discuss pain with an orthopedist? Seems kind of futile. Sounds like you have a good direction now. Go for it!

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    1. Well, supposedly orthopedists are supposed to listen to the patient when they describe where the pain is. The orthopedist has to know what they are dealing with, and if pain is in a certain area, then further investigation is warranted. This particular orthopedist happens not to be so up on the are of listening. Thankfully, a neurologist who specializes in hypnotherapy and holistic medicine listens, asks questions, and CARES. I am still floored by this whole thing, you know?

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  7. Oh, Sarah, this is such an uplifting post. Hope is such an essential element to healing. I applaud your decision to try the new protocol, plants are amazing. I am optimistic for your future.

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    1. Thank you, dear! It's wonderful to have others be optimistic with me. Awesome. :)

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  8. Sounds very promising. Be"H this should be the beginning of good news.

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  9. Funny what he said about the horn because I have been thinking since I commented on you last blog....here goes... You write often about playing again in the orch...but never say you miss horn playing. Sort of like an athlete who says if they accept me for the Olympics I will start running again....instead of running for the pleasure of running. Stop making playing horn Dependant on having an orch. job!!! I play because I love to play and make music. Isolating myself from all the craziness to sit and practice is like meditation. I find it clears my head gets out my tension and I am sure the full breathing is very healthy. Sounds like a wonderful new doctor...good luck

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  10. Yes, Tzippi you hit the nail on the head. My horn playing is very much wrapped up in the orchestral playing aspect. My best practicing is when I have an important concert coming up. I deeply love orchestral playing, and it is has always been parallel with my learning and development. I intensely *WANT* to play in an orchestra again. It is totally linked with my enthusiasm, or lack thereof, to start playing again. (and having Roman pop into my life semi-frequently feeds my dream)
    Everything you say makes sense. It's just that yes, I LOVE playing horn, but it is so wrapped up in orchestra playing, that is what i miss the most. It would be cool to play 4tets or trios, so I hope that is enough to get me the jump start I need. I think it will be.
    That is also why I don't really enjoy teaching music. I have the perorming bug, and teaching winds up with me frustrated. I am a perfectionist when it comes to music . Not in everything in my life, but with music. It is not good teaching to impose my professionism onto the student. I've taught many times, and I saw the result of my perfectionism. It just isn't congruous to teaching with patience and acceptance.

    Bottom line, just for me to pick up my horn again will be a HUGE step over my block. What happens thereafter is whatever feels right. I am pretty sure that will include getting together with you and your group and enjoying playing harmonies together. There is *nothing* like horn chords, you know?

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  11. This is wonderful news and a wonderful reinterpretation of what you heard before! Wishing you all the best with your new direction.

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  12. Amazing. Hope this new direction helps you control your pain. If you want to talk to someone I have a friend who has used it for years to control pain from a childhood hip disease. Today he owns his own business. You are correct, it doesn't matter what others think. Anyone who says differently is an aspirin consuming hypocrite.

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  13. Sarah this is wonderful, what a great doctor, what a turnaround meeting. It's really exciting and hopeful.

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  14. Sounds like you have a great doctor and a great plan to move forward! I've been thinking for a whole that canabis might help you, but didn't know how to suggest it

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  15. No judgement comin' from here in Colorado. I know a doctor who prescribes cannabis for a living... Like all medicinals, it can be abused, but I can't think of a more appropriate situation than yours to try it.

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  16. Is this the form of hydrotherapy (Vincenz Priessnitz, Sebastian Kniepp, etc.) that was all the rage in the 19th century? OK, I admit that I realize the answer is Probably not. But a lover of anachronism and of the odd can still hope.

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    1. I don't know what you are referring to Richard. Elaborate....

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    2. https://www.facebook.com/l.php?u=https%3A%2F%2Farchive.org%2Fstream%2F39002086176733.med.yale.edu%23page%2F8%2Fmode%2F2up&h=4AQE1JQlL

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    3. http://www.ndhealthfacts.org/wiki/Hydrotherapy

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    4. http://www.facebook.com/l.php?u=http%3A%2F%2Fmemory.loc.gov%2Fcgi-bin%2Fquery%2Fr%3Fammem%252Flhbum%253A%2540field&h=QAQHPSjJB

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    5. Rich, thanks for the interesting articles. I never knew that older stuff. Each time I have gone through hydrotherapy, it's been in *heated* pools. It has to be heated to a certain temp- body temperature- in order to really be effective. That tem has to do with helping the lymphoedema as well as joint inflammation. I'd hate to have to get into freezing cold water! I also can't imagine that it'd be good for the muscles, they'd have to constrict- exactly the opposite of what helps a cure, I'd think. Anyway, when it starts, I'll be writing about it!

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    6. Sounds like a different hydrotherapy. In a sense, too bad, as it would be fun to have some of those flamboyant theories revived. In a sense not bad, since the 19th century hydrotherapy did not work.

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  17. I'm speechless, so much of this applies to me. Keep writing because I love it. I may not comment every time but I do read it and you are an amazing writer.

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  18. What a bracha to have found a doctor who is compassionate, knowledgeable, innovative, and NICE. This holistic approach is exactly what was missing, together addressing the needs of both body and soul. As for cannabis, in the right dose it should be fine, but it's important to be aware of and control possible side effects of this too. (put away the cookies, :-)) So happy for you, IYH this will be a derech for good things to come. Lots o love, Devorah

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    1. Hey Dev, yes, it is amazing to have found this doctor. My "medicinal" neurologist who I had been seeing a few times referred me to this one, feeling intuitively that this type of approach, mainly the hypnosis, is a good fit for me. B'ezrat Hashem.
      About cookies- here, they used to sell Cannabis cookies as a way for people who need medicinal cannabis to take it without smoking it. Recently I heard they are no longer available. Seemed like a good plan to me, though- Cannabis pain control and the munchies all on one!

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  19. Sounds like a fantastic doctor and person--no wonder he is in such great demand! Good luck with what sounds like a very thoughtful and holistic plan for healing--onward and upward, And may this bring you much peace, happiness, and good health all around!

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  20. One of Chekhov's stories mentions radishes in hemp oil as being a gourmet food. http://www.online-literature.com/anton_chekhov/1271/ It does seem surprising that the medically active components of cannabis have not yet been identified, which would make it possible to measure the strength and know what dose a patient is getting. This also seems to me to give the treatment a 19th century feel.

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    1. I agree with you, Rich, that the dosages for Cannabis have not been controlled scientifically. I think that is part of the stigma that much of the medical world has about the stuff, that it won't fund research for it. If they can serarate out the part of the plant which causes the "high", tetrahydrocannabinol (THC), then why not continue on to separate the individual elements that give pain relief and begin to control doses. That is one frustrating thing with this that there seems to be no real dosage, just experimentation until it helps.

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  21. What a positive, inspiring post, Sarah. I'm so glad you have found a doctor who can treat you holistically, and I am praying hard that this sets you on a course to healing.

    And I completely get it wrt the horn playing. I love singing in any context, but what really sets me off is singing solos (preferably in church). Once that bug has hit you, nothing else quite satisfies.

    I have to admit to the same prejudices against orthopods that I'm sensing from some others here. I think of them as glorified wrestlers, who occasionally use a saw. I do think that different specialties have very different culture and that is often reflected in the practitioners.

    And how wonderful too that your new doctor is able to incorporate your spirituality into your treatment (and understand it and respect it and share it). Our hellish experience with the psych for my son a few months ago was compounded when she asked about religion and I told her that we were practicing Catholics. You could see her immediately tick the "irrational superstitious rednecks" category on her mental list and that was that. Having someone who understands where you're coming from and can help you tap into the support you get from your faith is priceless.

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    1. Yes, yes, yes! About all the stuff you wrote. The music preformance understanding, the spiritual support. Until this happened, I didn't have any hard feelings toward orthopedists. I just needed to go see them because of my hip issues, and that was their specialty. I now also see that certain professions can attract certain types of people.
      I will still need the follow-ups with the orthopedic oncologists because of the risk of PVNS returning, but that is less frequent, and also those guys are a different sort of orthopedist. They deal in oncology, so it has a different twist.

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  22. This feels like all of a sudden being on the right train, and on the right track while going in the right direction. as opposed to the previous doctor throwing you OFF track (literally derailing you) while you were trying to get on track and finally going in the right direction.

    Unbelievable.

    Hadassah

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  23. Dear, dear Sarah,
    Shavua Tov!
    It's all about peeling the layers of the onion. One layer at a time. Yes, incredible physical and emotional pain, and yes, look at the woman that you are today... :-) somehow, we just can't shorten the process, because it is a process.
    (I wanted to open this with "Yes, Virginia, there is a Santa Claus")
    I just want to remind you that if it's ever possible for you to get over here,as I've mentioned before, I do trauma release work.
    Xoxo,
    Miriam

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  24. So happy to hear you've found a doctor who gets you and relates to your unique medical challenges. A door closed but another one opened. Amazing.

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  25. Sarah, this was a wonderful post with wonderful news. Your two doctors remind me of the two taxi drivers I met in Jerusalem when I was on a trip here at age 11. How amazing one's "mabat" is! Your first doctor had a rock from a mine and only saw the black, the second one saw the diamond through the film and sounds like he's an expert at polishing. May the plan now arranged begin and may the results help you shine like never before! Absolutely wonderful!

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  26. So pleased to read this, Sarah.

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  27. Why is using cannabis to control pain any different from using methadone or even heroin to control pain? Heroin is (as you probably already know) still the best thing available for controlling "breakthrough pain" in cancer patients. In addition, I have known people who were prescribed heroin by their doctors to control chronic back pain. They got a physical addiction - which warned them if their heroin pump was empty - but no high and no psychological addiction. (Not that I would wish you another physical addiction, but I think you can see my point.)

    If you have not already seen it, you might find this article of interest:


    ‘Designer strains’ of cannabis could cure more ills
    An Israeli crop developer aims at maximizing marijuana's medical benefits while reducing its high.

    http://www.timesofisrael.com/designer-strains-of-cannabis-could-cure-more-ills/

    May all your new appointments come soon and may things go smoothly for you, with the minimum of bureaucratic annoyance.

    I also pray that, this time, something works and pain goes back to being the warning it is supposed to be, instead of an all-too-common misery.

    All the best,

    Jeannette

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    1. Jeanette, yes, I actually have seen that article recently. Two other people sent it to me!
      What you are talking about above is not addiction, but dependence. Physiological dependence. Addiction is a combination of physiology with psychological aspects. At least that is how I understand it.

      Thanks for the good wishes.

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  28. Nothing I can say about the session with the orthopedist that you haven’t already thought or said. Glad you are no longer involved with such an insensitive person.

    Your neurologist, on the other hand, sounds like someone who truly understands and wants to help. Great recommendations, especially the meditation! Good to know he is here at Soroka, rather than Tel-Aviv or Jerusalem. Medical cannabis is a non-addictive pain med. Why would you expect people would think less of you for using it? If they do, maybe you don’t need those people around you.

    Way to go, Sarah!

    All the best,
    Edna

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  29. Z&I could not be happier!!! G-d bless and heal you, and may you continue to find those that can and will help! Rise & Ze'ev

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  30. Hi, I have been following your blog for awhile. After all the insensitive people you've had to deal with, it brought tears to my eyes that you have found a doctor who is understanding, and who wants to treat you in a holistic manner, looking at all of you, not just the specific body part that his specialty officially treats. The use of medicinal form of cannabis is becoming more and more popular and accepted here in the U.S. Hashem should bring you a refuah shleimah b'karov.

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    1. Thank you, Elisheva, what a lovely response. I so appreciate you being with me here! :)

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