Reluctantly revisiting the world of pain
Chronicles of an NF survivor
by
4M ago
School is so all-encompassing that I really don't have much time to be with myself and write. I do miss that, but I'm doing something important- learning to become a nurse- and it really is all encompassing. I have a year left. But that year may need to be stretched a bit. Time is not always in our hands, you know? Hashem makes timing for things. I used to say that to my birthing women a lot, and it helped them with labors that were long and slow. Helped me get through them with the women, also (long labors, as their doula). Hashem controls timing of things. I decided to write now because I ha ..read more
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Becoming, and becoming a nurse
Chronicles of an NF survivor
by
1y ago
It's been a whirlwind since I started nursing school. Classes almost every day, tests all the time. Memorization, memorization, memorization. Learning and studying constantly. When I'm not in class I am home studying and making summaries in English of the classes (which are all in Hebrew of course). (I do try to get to the gym still, but it's more like once a week...) To say it's been challenging is an understatement, it's been so intensive and difficult for me I feel like I am just scraping by. But I've passed all the tests (so far?), and am keeping my head above water. The amount of learning ..read more
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Changing my story
Chronicles of an NF survivor
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1y ago
How appropriate that the last time I wrote in this blog I said "Searching for more meaning in life". That was November 2022. My search has come to a very important and exciting conclusion indeed. But before I break that news.... I did finally hear back from my New York surgeon. Finally, after a long wait. He said that the pain I have is from needing a hip replacement, that what he saw in the MRI's- his plastic surgery- all looks good. Everything is where he left it, and it really looks fine. That is good, I don't know what I would have done if he said we needed a revision. In the meantime, I a ..read more
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More meaning in life
Chronicles of an NF survivor
by
2y ago
 I'm OK.  After my last blog post I got a lot of messages and calls from concerned friends and loved ones. I didn't mean to scare y'all, not to worry, I'm OK. Things are tough sometimes, but isn't it that way with everyone? C-PTSD makes things harder, for sure, but I'm doing relatively OK with that this week. I still haven't heard from the doctor in NY. It is quite frustrating, I sent them both (the doctor and his secretary) emails reminding them that I exist and am here waiting for the doctor's evaluation of my MRI's. At the same time, I haven't called. I don't feel like calling. I ..read more
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The entire plastic surgery department
Chronicles of an NF survivor
by
2y ago
Accompanied by my dear friend Miriam, I went to the team discussion at the plastic surgery clinic last Monday. I'm pleased to say that it wasn't as bad as I imagined it might be. Although there were at least 15 or more men in that room (yes, all men), all crowded around a conference table, I wasn't shaken. Much. It freaked me out a little when the leader of the pack, the head of the plastic surgery unit, asked to see my scars, in front of the whole crowd, but according to Miriam, I handled it all very well. I indeed lifted my skirt and showed off my badges of honor. I was mainly talking to the ..read more
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Confusion leading to clarity. That's why writing helps.
Chronicles of an NF survivor
by
2y ago
Remember back in April when I re-opened this blog because of pain? It had been around for over a half year at that point. It's now almost a year since the pain started. We are making some progress as to the nature of the pain and what can be done about it. First the news on the progress of getting an MRI for my NY doctor. I went to the plastic surgeon here in Soroka last week, and I had to really be my own lawyer. He wasn't convinced that I needed an MRI and at first didn't want to recommend one. He wanted me to go to the pain clinic for pain control. I ***hate*** that answer. I am no longer a ..read more
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Nope, no good fairy, and so far, no MRI
Chronicles of an NF survivor
by
2y ago
 Well, I was wrong. There was no good fairy. The approval I thought I had from the national insurance for the MRI didn't actually happen. I mistook the approval that did come through for the approval for the MRI. Instead, it was only the approval for the contrast material *for* the MRI. So the contrast material is approved but the MRI isn't. Lovely system. So, in short, I don't yet have approval for the MRI. We can't begin to investigate this pain problem until we have an MRI. The insurance wants me to get a recommendation for the MRI's (there are supposed to be 3 of them) from someone he ..read more
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On the eve of my coma-versary
Chronicles of an NF survivor
by
2y ago
My friend said "I hope your pain is better, you didn't talk about it at all" at our dinner together last night. No hun, it's not better, I just don't like to talk about it. I write about it in this blog, but I don't talk about it much. If I'm "on-line" with other NF survivors (I am part of a support group of people who have had Necrotizing Fasciitis, all over the world) I talk about it if I'm asked how am I doing. But in general, if you're not my husband or physiotherapist, you won't hear about it much, if at all. I don't even talk about it much with my family doctor. I only talk about it enou ..read more
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Too much pain- Next step MRI
Chronicles of an NF survivor
by
2y ago
 It's getting worse. The pain is getting worse. I am getting desperate. I don't write this lightly. Every step I take hurts. I have started taking pain meds so I can manage life, but I can't sustain that for a long time. I get rebound headaches from extended usage of pain medicine. I can still go to the gym and get some of my workout and physical therapy done, but many many things hurt a tremendous amount. I am going to cut out going to physical therapy with the man, and keep going, for the time being, to PT woman. What she does is better for me than what he does. I went to my psychiatris ..read more
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I'm back, and I'm a grandma
Chronicles of an NF survivor
by
4y ago
One thing this world can count on is that changes will happen. Nothing stays the same for too long! The biggest change I have just experienced is that Dov and Achinoam ("DnA") had a baby, and made us grandparents! Not only that, but I was present at the birth. What an experience. Dov called me Saturday night directly after Shabbat to tell me they were already in the hospital with good strong contractions. So I hung up the phone, got a bag together, took my doula "bag of tricks", and started heading up to T'veria (Tiberius) to meet them at the hospital. It's a three hour trip for me, so I knew ..read more
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