tag:blogger.com,1999:blog-24641633025538277772024-03-06T22:00:54.636+02:00Chronicles of an NF survivorBuilding my life after the devastation of Necrotizing Fasciitis
(The Flesh Eating Bacteria)Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.comBlogger1107125tag:blogger.com,1999:blog-2464163302553827777.post-8074685942555787762023-09-28T18:25:00.001+03:002023-09-28T18:25:50.391+03:00Becoming, and becoming a nurse<p>It's been a whirlwind since I started nursing school. <br />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 feels like first year medical school, honestly, with the in-depth details of illnesses, syndromes, and complications we learn. Soon we start a class in pharmacology, where the level of memorization will skyrocket to heights yet unknown to me. Then pharmacological mathematics, where, if you don't get a 100 on the test, you don't pass the course.</p><p>Two more years to go.....</p><p>Today I had a test in Pathology. It was mostly about cancer tumors, post-mortem exams, various illnesses with varying and complicated names for tumors and irregular developments. What didn't I have to work too hard to learn? That which I've personally been through-- Lipomas, hypotrophic scarring, necrosis, infections that can lead to necrosis, sepsis. I am a pro in those fields of information.</p><p>Funny thing is that the test was in a classroom in Soroka hospital, the place where I went through all that stuff. Usually our classes and tests are accross the street in the teacher's center building, but it was closed today so they sent us to Soroka to take our test. Aside from not wanting to run into the doctor from the NF, I was also flooded with memories of my hospital stays there. I was in the area where it all happened, the main area. Recently, like for the past few years, if I've needed the hospital at all, I've only had to go to the out-patient building, and not experience flashbacks. And honestly, I've been so healthy that I've only been to the hospital grounds a few times, and those were to finish my series of immunizations for getting ready to be a nurse (lots of vaccinations in order to work in the hospital).</p><p>Today there was anxiety and flashbacks. It was murky. But oddly positive, too. Appealing to me in some way. I studied so hard for the pathology test, but the unexpected flashbacks weren't helping me retain my material. It's hard to describe this relationship I have with that hospital, where I'll soon (January) be doing clinicals in the wards with the nurses and doctors. In one way, that hospital is a magical place, a place where I changed, emotionally and physically, and where I survived, when death was a real possibility. It brings up all kinds of feelings for me, some challenging and some positive. I am drawn to being there, to hopefully help others who are in similar position to where I was 16 years ago. It's not going to be easy, though, I know this.</p><p>My scar still hurts often, and I might be having some kidney problems. My upper leg and half of my belly area are forever numb. I still deal with PTSD, although recently not as much, thank G-d. There are daily reminders for me of the NF. They will never go away. I hope that physically I can do the nursing that I want to do. In some ways, I wish I could train in a different hospital, clean slate. In other ways, Soroka is where my tikun lies, and I am relieved and excited that I am on track to meet it face to face. Being there today was good. I got a great parking space. And the test went well. :)</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqG7-Erii02PKunrJTEhQavyhhlYCtxmRnhQquQQpoBCZvmgB-8VZfPIGKfVOR5XfBMlzJI0HMe3vdfNzp5NiWslzy5o2km56pWvWT38D1pJq8txQJNd0PHn5q0LW5lb6GHID3cFzq849Qn3_jelABjnm0g-kuek90ZsPSYPtikYAC8j2_yvRPUxui6NU/s1701/Scrubs.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1129" data-original-width="1701" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqG7-Erii02PKunrJTEhQavyhhlYCtxmRnhQquQQpoBCZvmgB-8VZfPIGKfVOR5XfBMlzJI0HMe3vdfNzp5NiWslzy5o2km56pWvWT38D1pJq8txQJNd0PHn5q0LW5lb6GHID3cFzq849Qn3_jelABjnm0g-kuek90ZsPSYPtikYAC8j2_yvRPUxui6NU/s320/Scrubs.jpg" width="320" /></a></div>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com2tag:blogger.com,1999:blog-2464163302553827777.post-71310277258949104112023-05-05T17:58:00.000+03:002023-05-05T17:58:05.899+03:00Changing my story<p>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....</p><p>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 am pretty much able to keep the pain at bay if I take care of myself and don't overdo it. I still don't want to do a hip replacement, I don't think the hip needs it yet. I can still walk to shul and back and usually stay out of pain, and for me that is a barometer of when I'll need to do the hip replacement.</p><p>I gotta say, I'm in a really good place with my health. Baruch Hashem. I think that's why I haven't written in so long, things are pretty stable. The NF was 16 years ago, and I finally feel the equilibrium I have craved most of those years that followed. I've worked hard to get that. I still go to the gym three times a week and work hard there. I did have Corona twice, and then bronchitis just a few weeks ago, but I remain strong, Baruch Hashem.</p><p>I do still feel twangs of pain and inflexability in the Gapey area (where the NF left the large hole in my abdomen and upper thigh), which is now no longer skin grafts but a long curved scar. But the pain passes pretty quickly. Or I just stop doing what I am doing that is making that pain happen.</p><p>I have done a few births in the past months. My doula work has also been very strengthening for me. One birth happened <i>in my car</i> on the way to the hospital. That was interesting! The woman had called me three times before the actual birth happened, and each time I went to her she was in labor and then went out [of labor]. So I left. The last time however was the real deal, and boy did that baby come fast. I was riding in the back of my car while the husband was driving. I needed to be with this laboring woman, I couldn't drive, too. When her water broke (actually outside of the car as we were getting in, at her apartment), she didn't tell me. I had no idea that her water broke, so I was taken off guard when she started pushing. In the back seat of the car. I told her what to do instead of pushing when she feels the urge, and I said "your water hasn't broken yet, we have time". Then she said "yes it did...." OH! I switched modes and told her husband that the baby is coming. I told him to pull over and call the paramedics. As he was on the phone with the paramedics, I caught the baby. Then the placenta. I had found some towels in my doula backpack, and we used those to their maximum capabilities. A beautiful baby girl was in my hands. I put her on the woman's stomach, and things were happy and chill for a few minutes until the paramedics came in their ambulance. I felt a bit shaky with the rapidness of it all, but I also felt great. The couple was very very happy with how everything happened, and with my attentiveness that whole week before the birth. And they had no issues when it came time to pay for the car cleaning. 😅</p><p>The second birth was just a few weeks ago. It was wonderful. Not too long, not too crazy fast either. First birth, completely natural from start to finish. The energy in the birthing room between the couple was so positive and completely loving, that it was one of the emotionally easier births I've done. When there is a good vibe going on between the couple, it makes my job so much easier. Not to say that I didn't work my butt off, but the vibe was so positive. There were showers that I got into with her, lots of massaging and so much encouraging, over hours and hours. Baruch Hashem that went well. They, too, are a happy new family.</p><p>OK, now for the moment you've all been waiting for.... what did Sarah do to get more meaning in her life?!</p><p>Well, as you know I've been doing the jewllery making job now for over three years. It is through the rehabilitation package of the country-wide health care. It has been so good for me. Much like a greenhouse.... warm, gently enclosed , encouraging growth, and providing a little sustainance. I learned the trade, made lots of beautiful pieces, and really enjoyed it there. But at the same time I knew it wasn't fulfilling for me.</p><p>Yesterday, May 4th 2023, was the last day of that job for me. It was very special. They threw me a party to say goodbye. Everyone said they'd miss me, and that the studio won't be the same without me. They said lots of nice things to me. I was touched, a little sad, and very excited because of what I was going to.</p><p>What would that be, you ask? </p><p>I am finally fulfilling a dream I've had for many years, even before I got sick in 2007.</p><p>I am going to nursing school to become a registered nurse. Yup.</p><p>I'm going to put all this medical experience I have gotten over the past many years to good use. Eventually I want to work in the women's ward, or labor & delivery, or possibly at "tipat chalav", which is the women and baby health clinics for newborns. </p><p>The learning is going to be very intensive for me. I'm so scared, honestly. I mean, I know I want this now more than anything, but it's So Scary. Can I learn as well as I did when I was in college and grad school? Can I memorize a zillion things? (maybe if I do like I did with concertos I had to memorize, I'll be able to manage it?) Can I do the physical side of it? I'm 55... everyone else in the class is young. I don't actually know that, as classes start on Monday-- as in three days from now! But I can be relatively sure that I'll be the oldest in the class by far.</p><p>The physical side of it. I think I don't totally know what I am getting into. I'm worried. I know it can be very challenging to be a nurse, on your feet for 8 hour shifts. I pray that I'll be able to sit sometimes. I need to sit sometimes. In order to get into this course, I needed a letter from my doctor that I am in proper physical shape to do this. She happily wrote it for me. But am I? I'm scared that I'll be in pain again, but I can only take it one day at a time. This is what I want, and I am following a dream, and Hashem is with me.</p><p>I am also worried about possibly (probably) needing to work side by side with the doctor who got me into the NF problem in the first place. I sued the hospital because of him, and he very well knows it. We have no relationship, and I want it to remain that way. I still feel antagonistic about him. I'll have to really work at being totally professional in any situation, no matter what or who is involved.</p><p>At my interview to get into the nursing school program, they presented me with some ethical problems that nurses face every day. They asked what would I do. But there was no situation like this, where I have to work with the doctor who almost killed me, and who was responsible for making my life so difficult for 13 years. Nope, that situation didn't come up. I kept my mouth shut, too, when they asked me if there is anything else I want them to know. I pray Hashem will lead me through these labrynths that lie ahead. I believe this will help bring more closure on the NF, even though I can say that I do have a certain amount of closure, just by being healthy and following my dreams.</p><p>Can you believe it?</p><p>Talk about full circle. Talk about changing my story. I am not the sick one anymore. I'm healthy and strong, and I am going to start nursing school in a few short days. With the help of G-d.</p><p><br /></p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com6tag:blogger.com,1999:blog-2464163302553827777.post-24956125345641509162022-11-10T18:51:00.001+02:002022-11-10T18:51:40.678+02:00More meaning in life<p> I'm OK. </p><p>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.</p><p>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 might in a little more time, but as for now I don't feel like it's so urgent. I am not going to go anywhere for more surgery any time soon. I've had enough of surgery, and I am putting up with the pain. That is my decision. I just can't bring myself to do more surgery, so it almost doesn't matter what he says. I mean, I'd know more when he answers me, but I am not running to do another surgery (after the 14 that I have gone through). I am just at my wits end with going through surgeries. I know I need a hip replacement, but as of now that is not slowing down my life a whole lot, even though it hurts chronically. I can still get to shul every Shabbat, and that is a gauge for me of when I'll do the hip surgery. I can even sit on the floor (for a short period of time) with my granddaughter, so that is also a gauge. If it comes to a matter of stopping me from living the way I would like to live, then I'll do it. The hip replacement, that is.</p><p>As far as if anything is amiss with my belly surgeries, and maybe the pain is coming from there, less and less I think that. I am pretty sure all the pain I feel is coming from my hip problems. But that, of course, is what I am waiting on my NY doctor to evaluate for me, if there *is* anything amiss in my belly surgical areas.</p><p>In the meantime, my hand, where I broke my thumb, still hurts. I am very worried that this is going to become chronic pain, too. Next week I start occupational therapy for that. I hope it'll help me. It's been a long time, I think it should have healed by now.</p><p>I am finding myself needing more meaning in my life. I do the jewelry making which is good for me, and I love, but it doesn't hold anything really meaningful for me. I need to be a doula more. I have a couple who is due to give birth in January, and I'm happy about that. I don't want to put off doing my doula work until I get a hip replacement. If I was going to do it (hip replacement) soon, I'd put off doula work, but deciding to wait on that makes me want to get more into doula work. I am also not so confident, though, that I can do it with the pain I have. I'll see how it goes with this couple in January. I would take other work if it came my way, though. I can't really yet advertise because at the moment I don't have receipts to give, I haven't opened a file at the income tax office stating that I am an independent business, so I can't give out receipts yet. I think I am going to go with a third-party type of giving of receipts. I have to get on that project. I can't really work much until I have that squared away. But I am here stating that I want to work as a doula more. If I put it out to the universe, work will come my way. That's always been my experience. I just wish I trusted my body more. It's not only my hip, but my thumb (for massages) also. I wish my body didn't hurt like it does. Quandary.</p><p>Back at the home front, things are good. Thank the Good Lord. My kids are all in a good space, and my granddaughter just turned two. We went to Bet She'an for her birthday a few days ago, that was precious. But it is such a long trip, and by the end of the night, I am in intense pain after all that driving. It takes three hours to get there, we stayed for about three (or four?) hours, and three hours back. Grueling for anyone with pain to deal with. But worth it. They are such a special family.</p><p>I'm going to go now, I have a birth-preparation class to give tonight and I have a few things to prepare. </p><p>Don't worry about me, things are ok. Kind of.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com1tag:blogger.com,1999:blog-2464163302553827777.post-71323772566524551942022-10-18T20:39:00.001+03:002022-10-18T20:39:50.636+03:00Not light reading<p>There are times that I don't feel like I have C-PTSD (complex Post traumatic stress disorder), and can feel pretty normal. Then there are the <i>other</i> times. I am finding myself fighting my demons these days. Depression comes in from I-don't-understand-where, and I am down for the count.</p><p>We just had a whirlwind of holidays here in the land of Israel, all of which are good, hard, and challenging in equal portions. I also just got a cast off my hand, which was on for three or four weeks... I lost count. It was for a suspicion of a broken thumb, after I had fallen down at my gym. The floor was wet and there was no "wet floor" sign, and I slipped right there. I think the cast was on too long, but the hospital didn't give me an earlier appointment at the orthopedics clinic. Now I am dealing with pain in that hand as well, yay me. I am supposed to do occupational therapy with it, so we'll see how that goes. As of now the hospital hasn't yet given me an appointment to start the OT, but I am back at my job with the jewelry making, and that uses fine motor skills, so that should help.</p><p>The holidays we heavy, and good and hard all at once. We hosted many people for big meals over the three weeks, we were also guests by friends, and we also got to visit many friends. Best of all was the visit from my son Dov and his lovely wife and delicious baby! It was all very social. Close to the end of all the holidays, when the title of the holiday has the word "happy" in it (Simchat Torah), I got really down, and whether or not it is related, I got some sort of virus which dragged me down as well (I'm still dealing with that virus or whatever it is).</p><p>I got down about the stuff I am used to getting down about, and I couldn't stop it in it's tracks. That "stuff" is that I feel aimless, without motivation, without drive, and I mourn my losses again. Those being the losses of my music career and my doula career, both which were booming when I got NF, when it all came to a halting stop. I admit that I have not touched my horn in over two years, and I am also not advertising for my doula work. I don't feel I can commit to a couple to support them throughout their birth. I don't have it to give these days.</p><p>The pain persists. It makes me not want to do anything. I think that is the biggest downer and the reason I have no drive, no motivation. I haven't yet heard from my surgeon in NY about his opinion about the MRI's. It's now officially been a long time. I finally wrote to him today to check on the progress of that. I hope to hear from him soon. But I also know that timing and such things are in Hashem's hands. I'll get his opinion when I am supposed to get it. I am not rushing to do any surgeries any time soon, even though I am in pain. I am just blocked about going ahead with another surgery. I can't do it. I think I need my other hip replaced (three orthopedists have confirmed that), but as I don't have my doctor in NY's opinion yet, I am not going ahead with anything. It is more than that though, I think that even if I had his opinion, I would be blocked about going forth with another surgery. I just don't want to do it. I have had enough. I am at an impasse with myself. More surgery seems insurmountable at this juncture in my life. I have had 14 major surgeries, some of them quite intense, was in an induced coma, and have limped on one side or the other for many years. My body is screwed up. My soul feels screwed up too. I haven't been in any sort of therapy for well over a year, and that's OK with me. I think I've just had it. If it comes to me needing surgery and the choice is no longer a real choice, I will probably need more therapy to wrap my head around it. I have just been through too much. And I miss my life from before NF. It comes down to that, I think. I miss being driven and successful in my careers, and I miss the "me" I used to be before all the medicalization of my life.</p><p>I have been having nightmares again also. I don't know what causes them, but they are nasty. Messes up my whole night, and sometimes the day as well. I wake up yelling, and get totally freaked out, and need time awake to decompress. For a week, the week of <a href="https://en.wikipedia.org/wiki/Sukkot" target="_blank">Succot</a>, my husband was sleeping in our "upstairs sleeping succah" (to be differentiated with our "downstairs eating succah"), and I wasn't, so I was alone in bed. I had a major nightmare while he was outside and had to process it alone. I'm glad the holiday is over and he's back in our bed. The nightmares are from the PTSD of course, the content of them makes that abundantly clear for me. They get me when I'm down. The Cannabis used to be good for deterring them completely (like magic, I am telling you), but I unfortunately got sensitive to it, got headaches every morning, and had to stop taking it.</p><p>I hope this new year on the Hebrew calendar will bring me peace of mind and body, although that feels too far to grasp right now. I pray that the pain will chill out without surgery, and that I return to at least one of my previous hobbies/ careers. I'm only 54, it's too early for me to give up. But I can tell you that giving up is my constant shadow.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com8tag:blogger.com,1999:blog-2464163302553827777.post-51033999386914840112022-09-12T17:47:00.001+03:002022-09-12T17:47:09.754+03:00The entire plastic surgery department<p>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 head of the department, and blocked everyone else out. The one doctor I was hoping to meet, I noticed him from his picture on the internet, well, he was texting the whole meeting, so he obviously wasn't interested in my case. Nobody introduced themselves.</p><p>Mainly the discussion was about whether or not they think they can help with my pain. They looked at the evaluations of the MRI's, and weren't interested in looking at the discs. The main upshot is that they wouldn't do anything surgically. They admired the great job that was done by the NY surgeon, and said they have nothing to add to that. They agreed that the most likely scenario is that I need a hip replacement and that is where all the pain is coming from. I'm still not convinced that there isn't a plastics component to the pain, because I often feel it radiating from (or to?) my belly. But they said that going in again could cause more damage and not fix anything, so they'd leave well enough alone. (although *is* it well enough?)</p><p>Of course that is what I got from four other surgeons I saw four years ago, before I had the surgery done in NY. All the surgeons I saw because of the pain I was having all said they couldn't help me, and wouldn't go in there for any sort of surgery. Until I met the NY surgeon (through the Mayo clinic visit) who actually helped me tremendously. So I wasn't so surprised at this team's opinion of "do no harm", don't go into a surgery without a clear and present goal. I suggested some goals, like to take out the remainder of the mesh that is still in there, take down the adhesions and clear away scar tissue, but they weren't supportive of any of those ideas. I asked them, if I were to have hip replacement surgery, could they come in during that time and clear out scar tissue while I am having the hip replacement on the same side. No was the answer to that. They wouldn't do any procedures on me, and wouldn't do a plastic surgery during an orthopedic procedure. Again, I am used to this response. It was only different with the NY surgeon, and he actually fixed many problems at the time. I am eternally grateful for him and his ability to take the pain away for two and a half years. BTW, the pain I have now isn't at all like the pain I had then. At that time, four years ago, it was all in my belly, and I suffered tremendously. I was suicidal, actually, because all the doctors here told me they can't help me. So I saw the NY surgeon as my savior, in a way. He gave me my life back. The pain I have now isn't so clear that it's coming from the belly, or even the left side of the belly like I sometimes think. It may all be from the fact that I need a hip replacement, I'm just not sure. When I needed the right hip replacement (two years ago), the pain was very different than what I am experiencing now. That's I why I am questioning what would be helpful in this case.</p><p>Now I await the response from my NY doctor. He received my MRI discs last week. I'll write to him if I don't hear from him in another week or so.</p><p>In the meantime, I am not emotionally ready at all for hip replacement surgery. I have a block against it in my head. Surgery sucks so much, and I've been through more than my share. I may have to wait till the pain gets unbearable, or until I can wrap my head around yet another surgery. I just can't get myself to make the phone calls necessary and get a date for hip replacement surgery. Anyway I'll wait until I hear from my NY doctor before I do anything.</p><p>In the rest of life, things are good, thank Gd. We are coming up again on Rosh Hashana, which I can't believe is right around the corner. I may pull out the wheelchair to get to shul and to various friends houses during the holidays. One day of walking to and from shul often can put me in pain for the rest of the day and the next, so I'd like to avoid that. I hate using the wheelchair though.</p><p>You know, pain is so all encompassing. and constant pain is debilitating. It's just about all I can write about today. When you see me, we talk about many other things, and I don't usually show that I am in pain, though, which is still a blessing. Life is a blessing.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com4tag:blogger.com,1999:blog-2464163302553827777.post-49406245913549939342022-08-31T18:08:00.008+03:002022-08-31T18:08:41.388+03:00post-MRI happenings<p>Today I put the discs with the MRI's I've done into the mail to my New York doctor. Paid a pretty penny for express mail, and it's out.</p><p>Ironically today as well, I got a phone call from the plastic surgery department at Soroka hospital, where I first had the NF. I'll explain why...</p><p>When I went to them over a month ago to request that they write a referral for the MRI's which my NY doctor ordered, as my health fund required me to do, the doctor I saw that day had a condition in order to give me the referrals for the MRI's. That condition was that I come to a "team discussion" of my case after the MRI's. Today is when they called me to give me the appointment for that team discussion. That will take place this coming Monday at Soroka, in the plastic surgery unit. The purpose of this is to discuss the findings of the MRI's (which I don't even know yet), and I think to try to convince me to keep my care in Israel. I think the health fund doesn't want to pay again for a surgery abroad, and that's why they required me to jump through hoops to get the MRI's done. So the condition that the Be'er Sheva plastic surgeon put on the referral for the MRI's is that I hear what the opinion is of the surgeons here. While there is never anything wrong with hearing another medical opinion, I don't want to go to this team discussion in Soroka. That isn't the place where I would move my care to. I wouldn't undergo another surgery in Soroka unless my life depended on it. That being said, there is a doctor in Soroka plastic surgery that I might trust, but haven't met him yet. He has very good ratings and comments on the internet, and, although I wouldn't make this a rule of who I can trust, he is religious. I'll meet him at this team meeting. I hope they don't use the platform to tell me to go to the pain clinic, and put me on the defensive again (like the plastic surgeon did when I saw him to ask for the referral for the MRI's). Unfortunately Robert can't be with me for that team meeting, he's working at that time. I might see if I can take a friend but I'm not sure.</p><p>I don't like the idea of being in the room with a bunch of doctors, and me, the patient, it sounds intimidating. I've done it before, at Ichilov hospital for the PVNS, and it was stressful. Also, being in Soroka plastic surgery is stressful. I do know some of the doctors there, and it was from a time that I got PTSD, in part, from them. But since I agreed to this condition, and the health fund paid for all the MRI's, I do have a responsibility to go. So that's on Monday. Wish me luck.</p><p>Other than all this stuff, things are going ok. Pretty stable. The pain isn't getting worse, but unfortunately not better either. I can walk to shul on Shabbat, and I usually do, but I pay for it the rest of the day and often the next day as well. Last week I decided just to stay home and not deal with more pain. But missing shul takes out a big part of my week in many ways.</p><p>I am still making jewelry every morning and enjoying it. Here is a picture of the last set that I made: (it's not in great focus, sorry)</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp8q2rhUv8c58sATgo5ym0ZEUv_9Dey8vGMf1XbqjtKAnAp1wiOxFCX648uxm1JgFY3c70A2YbOleNU64epAKkeBhYL6tcfnPMh_mYaV98Efw05M8sASJ7lHNMv175CX61o2dGLZAXka24wRxwEl9Bub4o4zfKVWIh7zVsfqydvAlWFzij4cax7XAI/s960/Blue%20set.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp8q2rhUv8c58sATgo5ym0ZEUv_9Dey8vGMf1XbqjtKAnAp1wiOxFCX648uxm1JgFY3c70A2YbOleNU64epAKkeBhYL6tcfnPMh_mYaV98Efw05M8sASJ7lHNMv175CX61o2dGLZAXka24wRxwEl9Bub4o4zfKVWIh7zVsfqydvAlWFzij4cax7XAI/s320/Blue%20set.jpg" width="180" /></a></div><br /><p>My birthing work is kind of on hold at the moment. I am willing and ready to give birth preparation courses, but not being a doula for the time being. Probably not until after I recover from whatever surgery is looming in the near future. I'm just not physically up to being there for a birthing woman. I am not actually sure if I'll ever get back to it. I can't see that deep into the future.</p><p>Thank Gd the kids and Robert are all doing fine. My youngest is starting 11th grade this year, it's a big year of national graduation competency tests (bagrut). He's a great student, he'll do fine, b'ezrat Hashem. Shifra, my 19 year old, is just starting her national service being a paramedic at Magen David Adom (red star of David, like the red cross paramedic and ambulance service), so that's an exciting new start for her. She just moved into her new apartment in Jerusalem today! Ya'akov is staying with his program of working as a gardener in and around Be'er Sheva, and going on hikes and trips with different groups he belongs to. Dovi, my oldest, married, with my beautiful granddaughter, is also starting a new job this year, teaching in the Yeshiva he learned in, in Bet She'an. It's really awesome for him, he's starting to teach Torah and gemorrah to the first year students. It's really quite an honor. My daughter in law is in college learning for her teaching degree, and my little granddaughter is very busy being a 1+1/2 year old and delightful. Thank Gd, family is stable and thriving. I don't have enough thank you's to Hashem for that. Onward and upward.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com1tag:blogger.com,1999:blog-2464163302553827777.post-51745403832728645352022-08-22T20:34:00.000+03:002022-08-22T20:34:13.114+03:00Medical therapist<p>This Thursday is the last of the MRI's, this one of my hip/thigh. The last ones were of my lower belly and pelvis. This is the series that my doctor in NY asked to see. I finally got it all approved by the health fund, and it is almost finished. Then, I send them all to the NY doctor, and he'll give me his opinion about what might be going on inside me to cause the pain I have. </p><p>It is the opinion of the orthopedist that all my pain is orthopedic, ie: I need a hip replacement, and that would solve all my pain problems. As I think that is true, I think I do need a left hip replacement, I am not sure if there is a plastic surgery element involved as well, ie: the NY doctor's realm. That is what I am waiting to hear. It'll be at least another month before I get his opinion. I have to send the MRI's by express mail, and then wait for him to go over them and get back to me. Thank Gd there is no emergency here, and I can wait. I can't make a decision without the other opinion anyway.</p><p>What has been going on in my head recently is that I am not emotionally ready to do another surgery. My last surgery was my right hip replacement, in 2020. It was a very painful surgery and recovery. VERY painful. Now, it's mostly fine. I do have some issues with it when I walk longer distances, but overall it's good. I just can't wrap my head around yet another surgery. This would make #15 if I get my left hip replaced. I am just fed up with surgeries and recovery, fed up with pain in general. I know that now I am in pain anyway, that I most likely need another surgery to get out of this pain; the physical therapy didn't solve my issues. I am doing it all anyway still, all the physical therapy, and going to the gym three times a week (in a normal week). But I am still in pain.</p><p>I *hate* that I am going to have to go through another surgery. HATE IT. I am not at all emotionally ready or willing at this point. I have just been through too much. My social worker thinks I should see a therapist to work through this, because I am going to need surgery soon, and I have to incorporate it into my well-being. There are specific therapists here that deal with medical circumstances. I saw one for a while a long time ago, (hi Shuli!) and she helped me tremendously by using EMDR. I might go back to seeing her, although she is in Jerusalem. I'd like to see someone here in Be'er Sheva, and I have a few recommendations from my psychiatrist who I highly respect and feel good with, but again, I just don't want to DEAL. I wish I had no medical issues at all. But, I do, like it or not. One never gets used to pain. It always sucks.</p><p>Last week Robert and I got away on a mini-vacation together to Jerusalem in a fancy hotel. It was SO nice. We did Jerusalem things, like a museum, botanical garden, art and craft fair, and a 3-D historical film with moving chairs ("minheret hazman" for those who know...), Mamilla, etc. It was nice just to get away without any kids and enjoy Jerusalem and each other. I was in pain for not an insignificant time through it all, and that was a drag. I just can't walk distances anymore, it hurts too much. I know I need the hip replacement, and that in the end it will help my quality of life, but in the immediate future, I am not ready to deal with another operation and all the pain that that entails. Also we have to find out from the NY doctor if he thinks there is a plastics element to the pain as well (nerve entrapment, or adhesions or something that I don't yet know is happening...). There is still part of the mesh in my belly, and I don't think anything can be done about that; it is incorporated into the tissue too much to remove. If that is causing the pain, (although the pain does seem to be over my hip), I have to just live with it. Or do a procedure that burns the nerve endings that lead to that pain. It's too much to deal with. But I have to deal with it. But I don't want to. But I have to. But I don't want to.</p><p>I feel like a 6 year old kid saying "don't wanna!!" I am just so DONE with difficult surgeries. I am also done with being in pain. Ugh. Up against that proverbial wall. I may go and see that medical therapist to help me deal with all this. I don't think I can do another elective procedure without that.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com3tag:blogger.com,1999:blog-2464163302553827777.post-61847508753233602352022-07-28T21:00:00.000+03:002022-07-28T21:00:05.888+03:00Confusion leading to clarity. That's why writing helps.<p>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.</p><p>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 candidate for pain pills or narcotic patches or any pills or elixirs. I told him that. I told him of my long-standing experience with pain medication, and that in the end of it all I get rebound headaches for months from them. Even over-the-counter ones. The last time I was on strong pain medications (my right hip replacement surgery 2 years ago) it took weeks of weaning to get off them, with debilitating headaches every day. I told him that I am not a candidate for the pain clinic. I even got sensitive to Cannabis, which everyone says is totally natural and nobody reacts to it. So I was successful in shutting that idea down, thank Gd. </p><p>I had to explain to him <i>why</i> my NY doctor wants an MRI now, to evaluate this pain (looking for possible nerve entrapment amongst other things). I really had to advocate for myself, this doctor wasn't really with me at first. But after a while, he said yes, he actually does see reason to do an MRI now. So in the end, he did write a referral for me to have the MRI's.</p><p>Then I had to submit that recommendation to my HMO, and I am now awaiting the answer from them. Their job is just to give me the payment form necessary to do these MRI's. The HMO ("Clalit" in Hebrew) told me weeks ago (months ago?) that I needed a referral from an Israeli plastic surgeon in order to get their payment form for the MRI's. Now I have that, and am awaiting the confirmation and payment form. So much red tape. The first MRI is scheduled for August 8th.</p><p>MEANWHILE....</p><p>Today I was at the orthopedic oncologist at Ichilov hospital, where I have been a patient since my left hip had the PVNS (in 2008, a year after NF). It's funny to have two different doctors for two different hips.</p><p>I showed them the CT that I had done at the beginning of July. They think all my pain, after explaining where the pain is, is from the fact that my hip is in an advanced state of osteo arthritis. They showed me where I am walking bone-on-bone in my joint. They think that all my pain with walking is due to that. Even when I explained that the pain is over my hip joint as well, near the scarred areas from NF, they said that that is a classic spot to have pain in a hip that is beyond it's time. I also have bursitis, by the way, but that alone isn't a reason to do a hip replacement. My orthopedic oncologist brought into my exam room two other doctors- one who is the head of their joint replacement department, and another guy who is his fellow. "Brilliant doctors" he said to me. OK, so they examined my hip as well, and the CT films, and came to the conclusion that I need a left hip replacement. That all my pain is from the hip. They went on to tell me that because of the surgeries and extensive scarring around the front of my hip, they would do an anterior approach to the hip replacement surgery. This is less ideal than what I had for my right hip replacement, which was a lateral (side) approach. With the anterior approach the recovery time is longer and harder. The doctor who replaced my right hip only does it with the lateral approach, so he wouldn't be able to do the anterior approach for the left one. The doctors who I saw today do both approaches, and are the ones who recommended it.</p><p>Now I'm in a quandary. Do the MRI's (assuming the HMO will cover them...), send them to my NY doctor and wait to see how that turns out, maybe fly to NY to get a plastic surgery there to possibly help the possible nerve entrapment syndrome, or skip the MRI's altogether and go for the hip replacement, where it'll take up to six months before I'll really know if the pain I've been having with walking for the past almost year is really gone? Or, do the MRI's, send it to my NY doctor, and see what he says and weigh my options.... I think that last one is the answer. This is all very confusing, but I think I've worked out what to do. Assuming that the HMO will now pay for the MRI's, I'll do them, and see what comes of that. If my NY doctor doesn't find a problem, then I'll do the hip replacement.</p><p>Either way it looks like I'm headed to a surgery. I knew it that when this pain started, I knew in the back of my head that it might lead to another surgery. It's my track record. I hoped that the physical therapy that I have been diligently doing (as recommended by today's doctor, 4 months ago) would solve the problem. Now, in physical therapy, we are working on my years-old knee problem, stemming from the same problem from the NF.</p><p>What would my life have been like if I never had NF? I just try not to "go there". No point. </p><p>I know that there is a lot of good that has happened since that horrific disease in 2007, and I prefer to focus on that. I am much more than merely my body.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com0tag:blogger.com,1999:blog-2464163302553827777.post-17778725672268073652022-07-12T18:08:00.000+03:002022-07-12T18:08:20.202+03:00Slow but steady progress...I hope<p> We are making slow progress. The campaign to get these MRI's done and sent off to my New York doctor is getting closer... I hope. If you remember, I have a recommendation for doing an MRI from the New York doctor based on my newest (7 months now) pain. However, the Israeli medical system wants a recommendation from a plastic surgeon here in Israel, not from new York. I'm supposed to get an Israeli plastic surgeon to sign off on getting me MRI's so we can evaluate this pain. Easier said than done. To make a long story short, I got a referral for an immediate plastic surgeon consult from my family doctor. Then I had to physically take it to the hospital plastic surgery clinic by hand to try to get an appointment. Today they sent me confirmation that I got an appointment for next Thursday. That is great. Now I have to hope that the surgeon I see agrees to refer me for the MRI's. They are making me jump through many hoops to get these evaluations, and meanwhile I'm in pain. It's very frustrating, but in a way I understand why they are doing it. They don't want to wind up paying for a surgery in New York. Last time they paid for the portion that my private insurance didn't cover, so I think they are trying to be cautious. But the New York doctor is the only surgeon I trust these days, and he is the most recent surgeon who has really known how to help me.</p><p>Robert did a little research on plastic surgeons in my city, and seems to have found one that has a great reputation and ratings. He's the one with whom I got the appointment for next week. So, we'll see.</p><p>In the meantime, I had a CT scan done last week, and I got the results from that already. Today I sent the scan to my New York surgeon for his evaluation. The results show lots of deterioration in my left hip joint in many junctures (the right one is the one that is bionic), cysts in the joint, and it also reported on the clips in my belly that are holding in the mesh. I am supposed to see my orthopedic oncologist at the end of the month with these results. I think he is going to suggest a hip replacement for the left, but I don't want to do it. And, I honestly think that the pain I have now is from nerves in my scar areas, not the joint itself. When my right hip needed to be replaced, it hurt very differently than the pain I have now. And my physical therapist is working on the fascia and scar areas and it is getting a little better. Not enough better to abandon this ship I set sail to get the MRI and evaluate things, but a little better. Recently the physical therapist is helping me with my knee problems, which also stem from all the injuries and surgeries I've had on that side. My knee always hurts with stairs...and there are lots of stairs in my life.</p><p>Physical therapy hurts sooooo much. I am willing to do it because usually the pain doesn't last past one or two days thereafter, but it's not fun in the slightest. But I am sticking with it because my orthopedist said to do it diligently before I return to see him, which is at the end of this month. And because it helped my hip pain a little. I am also still going to the gym three times a week, like it or not. I have had 14 surgeries in as many years, and was in a coma, and have serious pain issues, I have to keep moving. I'm always afraid of Gd forbid winding up in a wheelchair. That's one of my biggest fears. So I go with the adage "use it or lose it" and keep on truckin'. I want to keep being able to sit on the floor with my granddaughter to play with her. That's the real goal. So far, so good, pain and all.</p><p>Last week we had a mini vacation in the north of the country. It was a welcome excursion, I was very happy to get out of Be'er Sheva and be with the kids at a beautiful bed and breakfast. We swam in a lovely pool, and also in the Kineret (Sea of Galilee), and went to the Australian park that has kangaroos that you can pet and feed. It was topped off by Shabbat in Bet She'an with Dovi and his wonderful family. Got a good dose of my incredibly cute granddaughter.</p><p>Blessings abound, they just have to be sought out and recognized, right?</p><p>All-n-all, I'd rather live life without constant pain, though. Let's hope that the appointment next week with the plastic surgeon will be fruitful and he will give the green light to get the MRI's.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com3tag:blogger.com,1999:blog-2464163302553827777.post-73538019512768769872022-07-03T20:08:00.003+03:002022-07-03T20:29:18.535+03:00realizations and questions<p> I am slowly realizing that the pain I am dealing with these days, for many months now, and in some cases years, is a result of the reconstruction surgery I had done three years ago. In my physical therapy we are now addressing my knee pain on the same side as my thigh pain, on the same side where the NF was. You see, at the NF surgery they took out a large portion of skin and fascia, and some muscle in my lower belly and upper thigh. This we knew. Then they put a skin graft over the whole area to cover it up again because the skin and fascia was gone. </p><p>At the reconstruction surgery I had in NY three years ago, the surgeon removed the skin graft (and some of the mesh that was under it) and pulled together the healthy skin from the upper thigh and lower belly, making a large scar in the fold of my leg area by my lower left abdomen. The scar was a line instead of a skin graft. This pulled the leg skin, and part of a muscle that the surgeon moved, up toward the belly to meet the healthy skin from the belly. He literally took out the "patch" (graft), and pulled the skin together to cover the hole.</p><p>At the time, it helped tremendously. I was out of pain for a few years. I think it was the taking of the mesh that helped my pain, but taking away the graft also solved some problems. But, what I am suffering from now in my thigh and my knee is a result of pulling everything upward and sewing it together that way. My thigh is hurting around the joint and the scar, but manipulating the scar and fascia (very very painful at PT) seems to be helping a little. My knee has also gotten messed up by this pulling upward of the skin and fascia. It hurts every time I go up or down stairs (which is a lot if you know my house), or get up from sitting.</p><p>The physical therapist is addressing this, but we are not sure if we can alleviate all the pain. We have succeeded in alleviating some of the hip pain, which I am thankful for, but the knee is pretty messed up, and it has been so for a few years, so we are not sure if we can correct that.</p><p>Meanwhile I am still needing to jump through hoops to try to get this MRI of my abdomen, pelvis, and thigh. It is actually three MRI's. I went to see a random surgeon on Friday, and he said I am not talking to the right specialty, I need a plastic surgeon to deal with soft tissue problems. He wouldn't re-write the MRI recommendation that I have from my New York doctor (who himself is a plastic surgeon). </p><p>I tried to get an appointment with a plastic surgeon for this purpose, and the appointments are way into October before anything is available. So today I got an "urgent" referral for a plastic surgeon, which I was told is what I need in order to get a sooner appointment. If I find out this week that it won't be early enough, I'll find a plastic surgeon privately and go through the private insurance. Mind you, this is all to *rewrite* a recommendation for an MRI, which I technically have already from my New York surgeon. The appointments for the MRI's are supposedly in August. At some point I may just throw up my arms and not fight for the MRI anymore. I mean, it will just point to more surgery if I send it to my NY doctor, right? Is that the right move? He got me out of pain once, can he do it again? But will I pay for that surgery in pain later on as well?</p><p>Being in pain is depressing. It's getting to me. Over Shabbat I walked to synagogue (shul), then to a friend not too far away, but farther than my home, then back home. We had a lovely lunch with very close friends, and that was <i>so</i> good for me. But the walking, and going up their three flights of stairs wasn't good for me. I am in a lot of pain today, and today I also had PT, which often puts me back in strong pain, if only temporarily.</p><p>But really, what can be done? The PT is helping for the thigh pain but not the knee pain (yet?), which we just started to address. I have to keep the faith that it will help me with my knee too. But is getting the MRI a necessary goal? I am needing to jump through hoops to get the insurance to pay for it, and when I send it to my NY doctor he'll devise a surgical plan I'm almost sure. Knowing what I know now about the other prices for surgery to the body, is that my goal? Yet *another* surgery (to date there has been 14)? But maybe it can get me out of pain like the last one did, although we see it was temporary, but two and a half years pain free is something, not nothing. You see my dilemma? It's complicated. I don't want to wind up in a wheelchair, that's my biggest fear, along with having constant pain.<br />I pray for answers.<br />(CT scan of lower abdomen and pelvis tomorrow)</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com2tag:blogger.com,1999:blog-2464163302553827777.post-61377965296588292522022-06-24T17:49:00.001+03:002022-06-24T17:49:13.466+03:00Nope, no good fairy, and so far, no MRI<p> 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 here in Israel. I'm not really in contact with any surgeons here, so I had to just choose an anonymous surgeon and hope he will write the recommendation after I explain everything. I will show him the recommendation from my doctor in New York and pray that he'll write the same thing, but in Hebrew, from Israel. If he won't, then I have to look for a plastic surgeon who might. The doctor in New York is a plastic surgeon, so I'm not sure if a general surgeon will do it. In short, I'm back to square one.</p><p>In the meantime, I do think the physical therapy is helping a bit. I think the pain in my hip is overall less. I'm being diligent about doing it at home as well as at the gym, and I think it's paying off. The physical therapists I work with are concentrating breaking up huge, hard adhesions (which they point out to me so I can feel, too) and working on massaging on the scars. I think much of the nerve pain I am feeling is from the scars. It hurts like hell while they are doing it, but I think it's helping overall. Maybe I can avoid more surgery after all...we'll see how things develop.</p><p>It's been a hard week. I had a week-long headache, mostly that I could work through, but on Wednesday night it became a migraine. And I mean the worst migraine I've had in years. It hurt so much I thought my head would just literally split open. I was wailing and moaning in pain, rolling around my bed. It was B A D. I threw-up a few times as well. Somehow by the grace of Gd, I got to sleep a bit after the second throw up, but the pain didn't totally go away. I fitfully slept through the rest of the night, and stayed home the next day, nursing a migraine hangover. It was really really awful. I managed to stay out of the hospital, just out of sheer distain for the hospital and all that entails. I'm OK now, Friday, but still laying low. Well, I did go to the gym today, but I took it easy.</p><p>I'm going to rest a bit now before Shabbat. I'm exhausted.</p><p>Shabbat Shalom to all!</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com1tag:blogger.com,1999:blog-2464163302553827777.post-19842199755123356842022-06-02T21:31:00.005+03:002022-06-02T22:07:35.301+03:00The Good Fairy with pain?<p>I played the part of the Good Fairy in a play in third grade, and I had a solo song I had to sing which I stressed over for weeks before the production. I still remember that song! It was about waving your magic wand.... "You just start waving your magic wand, waving your magic wand, wave your wand with me and you'll see everything will be alright!" I right now at this moment have the exact tune running through my head. Some things we never forget.</p><p>I'm telling you about this because someone waved a magic wand- maybe my regular doctor- with regards to my MRI. When I first asked for the referral from my health clinic, based on the recommendation of the New York surgeon, the answer I got the next day was that I needed a recommendation from an Israeli surgeon, an American one wouldn't do. I thought 'what a bother, I don't have an Israeli surgeon to ask'. My doctor in the US for a well-deserved vacation, but she told me I can Whatsapp her if I needed anything. So, I did. I told her that they are not accepting the New York recommendation, and can she help me somehow. I don't know, but she may have waved her magic wand, because the very next day I got the approval from the Health fund that they will pay for the MRI, with the recommendation 'as is'. Great. So now I am waiting to hear back from the MRI company to give me a date. It will surely be quite a bit in the future, and I'll have to work on getting it at a closer time. We're getting there.</p><p>In the meantime I am continuing with life as best as possible. I'm still doing the gold-smithing jewelry-making every day. We have a lovely workshop that engaged couples come in and we make their rings together with them. We (I) "teach" them what to do with our machines and fire burnishers, and they take part in the making of their rings. Sometimes the man works on the woman's ring, sometimes the opposite, sometimes they work on their own rings. It's a really nice workshop, and I enjoy getting to know new couples a few times a week. I always work it into our conversations somehow that I am also a doula... for their next stage in life after the wedding. :) So if anyone out here in blog land knows of an engaged couple that may be interested in doing this, we are booked months in advance, but you can give them my number or email.</p><p>I am still going to the gym three times a week, and feel pretty strong regardless of having pain, thank Gd. I just could do without the pain. I managed to go to an out-of-town party last night; the son of good friends of ours got engaged, mazal tov! That was fun, but I was in a lot of pain by the time I crawled into bed. Then today I had physical therapy and it hurt a lot, and I got some new exercises to do.</p><p>We are coming up on the holiday of Shavu'ot. It is the holiday that the Jews, wandering in the desert, came to Mount Sinai and received the Torah. It is also the holiday of dairy, lasagna, cheesecake, Ben and Jerry's ice cream, and....well, I made that part up, but it is famous for eating dairy. It comes this year on the heels of Shabbat going out. So we have a lot of cooking to do tomorrow for Shabbat as well as Shavu'ot. We have staying with us still Robert's brother Larry, and our friend Ayala who just returned from six months in Nepal and India. So, full house again. The Klein hotel is active.</p><p>Things are stable in an unstable pain kind of way. I am grateful for what is.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com3tag:blogger.com,1999:blog-2464163302553827777.post-64423255710200006742022-05-26T19:52:00.000+03:002022-05-26T19:52:02.754+03:00No despair<p> After sending him another gentle reminder, my NY surgeon finally sent me the recommendation for an MRI with contrast. Now I have to go to the health clinic tomorrow and get a referral based on the recommendation. Then the referral has to go through the system to get an approval for the health fund to pay for it. So much processing before I can even make an appointment for the MRI.</p><p>Meanwhile I am using Voltarin medicine for the pain. It helps a little.</p><p>There is still physical therapy and my amended work-outs at the gym, but nothing is helping in any significant way. The other day I thought that a certain "light traction" maneuver my PT used actually helped, but it didn't last, and things are right back to where they were before.</p><p>It gets depressing not being able to walk to synagogue; that is a primary way for me to see my friends and community while also praying and hearing the Torah. My PT suggested I use my crutches to get there, but it doesn't really help much. I could use the wheelchair, but I *hate* using the wheelchair. Emotionally it's not good for me. I've written about that before. But I might do it to get to shul (synagogue) on either Shabbat or the holiday of Shavu'ot coming up. It really is good for me to be in shul, and depressing when I can't be there.</p><p>Recently I have taken two of my kids out shopping....no small feat with this pain. I can't say it was easy, but it was important to me. They both really needed some things, and while they are old enough to shop themselves, having me, my opinion and my car to go places is very helpful for them. Especially Shifra. She is right now on a "Birthright" (Taglit) tour as an Israeli accompanying them. She really needed some things before her trip, and I was happy I could do it. I took the Voltarin and girded myself for a few hours of going around shopping. We got what she needed, and I went home, made dinner for everyone, and went immediately out again to see a concert about an hour away. A friend was playing solo horn for part of the concert, so I wanted to go to support her. The Voltarin effect was still working, so away I went. I was really in pain during the concert, but I made it through and drove home (another hour drive) to collapse into bed.</p><p>Then yesterday I took Ya'akov out for an impromptu shopping trip. Many tried on shoes at many stores later, and he had two new pairs of shoes. I was spent, though, afterward. I didn't make dinner. Nobody went to bed hungry.</p><p>Oh, and did I tell you that the week before this we had a ton of guests for Shabbat? It was all of Robert's brothers (a rarity considering that two of them live in the US, but were here visiting), his niece and nephew, my brother, Robert's sister-in-law....the whole gang, including also all my 4 kids, daughter-in-law and wonderful granddaughter. It was actually very beautiful to have everyone over, but between the two big meals, it was...well... a lot. 11 people for dinner, and 15 people for lunch the next day (26 meals). And many of those people sleeping in our house. I don't know how I did it; the Voltarin helps, but not that much. I was running on adrenaline. Robert cooked a lot, I cooked also, Shifra mopped the floors, I took care of bedding and linens for everyone, and generally kept telling myself to thank Gd that I am well enough to have everyone over. Was I in tremendous pain? Yes. But my soul felt at once overwhelmed, and also at peace. It's hard to explain. This bout of pain isn't giving me the despair that I felt for the two years before my big reconstruction surgery. That was real despair. I didn't know if anyone would ever be able to help me. Now that I know this extremely special surgeon in New York, and he is supporting me with the MRI recommendation and whatever comes next, I do not feel the despair I felt last time I was in lots of pain.</p><p>There are times of depression, but not despair.</p><p>I only wish the cogs of the national health care system could work faster. Well, once I get the approval for the health fund to pay for my MRI, I can possibly get it done privately. I have private insurance, that we bought into a mere nine months before I got NF, so everything related to the NF is not considered pre-existing conditions, thank the Good Lord. There is a co-pay, where if I went through the health system it would be absolutely free, but sometimes it's worth it. Appointments for MRI's are often quite a few months away. My hope is to go to New York this summer some time to see my doctor (and my 101 year-old aunt, and my cousins and friends!). One step at a time. Got the recommendation, now need the referral and approval.</p><p>In the meantime, I'm being the best "me" I can be. For me, my husband, and my family.</p><p>With the help of God.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com4tag:blogger.com,1999:blog-2464163302553827777.post-43829294376754096612022-05-18T17:22:00.002+03:002022-05-18T17:23:39.543+03:00On the eve of my coma-versary<p>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 enough to get what I need (a referral for a CT scan, for instance). I mean, how much can a person discuss their pain? It's not really a conversation starter.</p><p>But yeah, I'm hurting big time. It sometimes wakes me up at night if I zig instead of zag, or roll onto that side by mistake. When I wake up in the morning, the first thing I feel is pain. When I walk, get dressed, do the stairs in either direction, get into the car, get out of the car, sit in a chair, stand up from a chair, you name it, that pain is always with me. And it's not getting any better with the intensive physical therapy I am doing. I may actually stop the physical therapy if it's not going to work. Not sure yet about that.</p><p>I gotta say here, on the blog that I opened for saying the hard stuff, it SUCKS to have constant pain. My fellow NF survivors can relate, I'm sure. Many of them are also in pain much of the time.</p><p>I had two and a half good years of no pain. (I'm 15 years after NF). That was after my reconstruction surgery in New York. But it's back. It's not the same pain I had before that surgery, though, it's totally different. I described it to my surgeon in New York when I wrote to him asking for an MRI.</p><p>He wrote back saying that he remembers that I had a "subcutaneous femoral..." hurdeehur........ I don't remember how he said it (I could go back and quote his email, but isn't it funnier to say hurdeehur)? Amazing that he remembered that from almost three years ago; he has a busy thriving practice, and I was a long time ago. He said he remembered that hurdeehur thing, but he wanted to go over my surgical records again and he'll get back to me. I'm now waiting for him to get back to me. If I don't hear from him this week, I'll gently remind him of my letter at the start of next week.</p><p>"But you're healthy" said my dear friend Miriam while we were drinking tea by the moonlight in my garden. "This time, you're healthy". Yes, it's true. I feel like I'm in a good place emotionally, and my body is strong. Thank the Good Lord for that. But the pain. It is <i>awful </i>to be in constant pain. It's almost all I can think about because it's always there. I'd be much healthier without it.</p><p>So we wait to hear from Dr. Margiotta, the New York doctor. The not knowing is the hard part. Not knowing what the pain is from, not knowing if he can help me, not knowing if we're going to New York this summer to see him, not knowing if I'd go for an exam, or for surgery, or... both?</p><p>Thanks for letting me confide in you. It makes a big difference that I can get this out here.</p><p>PS- the title refers to this date being the day that I woke up after the induced coma from having NF.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com2tag:blogger.com,1999:blog-2464163302553827777.post-8159349319422242032022-05-12T20:18:00.002+03:002022-05-12T20:18:24.664+03:00Too much pain- Next step MRI<p> It's getting worse.</p><p>The pain is getting worse.</p><p>I am getting desperate.</p><p>I don't write this lightly.</p><p>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.</p><p>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.</p><p>I went to my psychiatrist yesterday just for a check-up, and told her about the pain problems. She asked me why I'm not immediately in touch with my New York doctor to ask him for a referral for an MRI. I had convinced myself that I first need to get a CT done, then send it to him, and then he will recommend me to get an MRI. But I don't need a CT....for what? It won't show the issues of scar tissue and nerve damage going on now. So I wrote to Dr. Margiotta, my New York surgeon, last night and asked him for a referral for an MRI. I hope to hear back from him soon.</p><p>That's the plan... to get an MRI as soon as possible, send it to him, and maybe travel this summer to go see him. I'm glad I renewed my American passport, but now we have to renew our Israeli passports.</p><p>This is getting quite depressing. At first I thought I could avoid surgery and just do lots of physical therapy and I'll get better. I started doing the physical therapy, and things didn't get at all better, they got worse. I can't imagine what is wrong at this point....the remainder of the mesh that he left in last time is irritating me? It took a long time to raise it's ugly head if that's the case. It took two years. Maybe it's the adhesions that took that long to accumulate until they caused pain. I don't know. Something is definitely wrong though, in the gapey area and upper hip joint. It's all where the NF was.</p><p>What if I go through another surgery to fix whatever this is? Then I'll be back in the same position again in another few years with adhesions and pain? A person can't go on like this. At some point it has to stop. That's why I don't want another surgery, I think we'll just be repeating the cycle over and over again. But I don't know what else to do.</p><p>I'd like, I think, to kill the nerve(s?) that is causing this pain. It's possible to burn it from the source so it will no longer cause pain. I just don't know if it's actually one nerve, or the mesh, or muscle or other tissue that is causing all this pain. I simply have no answers. It's a hard place to be.</p><p>I wake up every day depressed after a not-great-night of sleeping because of pain.</p><p>I am still going to work at the silver/gold smithing job. It makes me happy. I make pretty things to sell. I am not taking any more births yet for the time being, I just can't, that's way too much work on my feet. Something has to change.</p><p>Things are not going well. Let's hope the New York doctor writes back and refers me for an MRI. That's the next step.</p><p><br /></p><p><br /></p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com6tag:blogger.com,1999:blog-2464163302553827777.post-73352163492014937242022-05-04T22:55:00.004+03:002022-05-04T22:57:57.185+03:00Celebrating the good, and living with the bad<p>Happy 74th birthday, Israel. It's the eve of Yom Ha'atzma'ut, Israel's independence day. One of the most beautiful holidays of the year. We just got back from the prayers with singing and dancing. It's very very special.</p><p>Unfortunately I was in pretty severe pain the whole time. I walked a lot today, partly enthusiastic because of my physical therapist who told me to walk a little bit each day. I walked a lot more than a little bit.</p><p>I have two physical therapists, PT man and PT woman. One is through the health fund, and one is private. I went to the private one when the health fund couldn't give me enough time with the PT from there. So I am more with PT woman. I think she zeroed in on where the pain is coming from, and how to deal with it (after the standard shock reaction as I retold my medical history). I am, at the same time optimistic, and depressed. It's a hard balance. If I get too optimistic I overdo it. Then I get depressed and feel this pain will never go away. Mind you, overdoing it is not hard to do. One circle around the park near my house and going to the mall today was way overdoing it. It'd be nothing for most fit people my age.</p><p>She thinks that the pain is partially referred pain from my belly, where all the hard surgeries were (and half the mesh remains), and partially from the piriformis muscle and nerve around my hip. Also my gluteus muscles are very painful. All around my hip area and left side of my stomach hurts. Also there are adhesions all around that area. PT woman (Dina) is doing a mixture of deep tissue massage (very painful even though she says she isn't using much pressure), ultrasound (not at all painful) and exercises. PT man (Itzik) is doing exercises and dry needling. The dry needling is SOOOO painful, I hate it. I'm not sure it's helping, but I have to give it time I guess.</p><p>Part of me thinks that the PT has a chance of working, and part of me thinks that I'll need another surgery after all this hard work I'm putting in. It can't be bad to put in the work, that's for sure. And I want to avoid surgery like the plague. It would just leave me with more adhesions later on. But, a procedure that might be worthwhile is one that can disconnect the painful nerves, then they won't hurt me anymore. I don't know.</p><p>I'm continuing to go to the gym, and Dina wants me to get on the elliptical machine also. I don't usually get on the elliptical, it hurts. She said to do 6 minutes, taking breaks if I need to. Those are muscles I need to build up. I always do 10 to 12 kilometers on the exercise bike, that doesn't hurt thankfully, then use the weight machines alternating between upper and lower body exercises. Then for the last 20 minutes or half hour I do stretches and floor exercises. I've added in the physical therapy exercises. I have to keep going to the gym, except if I am in too much pain.</p><p>At the end of each PT session Dina tapes up the whole area with kenesio-tape. I feel that that helps a lot, actually.</p><p>I see my orthopedic oncologist at the end of the month. I might put that appointment off for another month to give the PT more of a chance to hopefully influence the severity of the pain..</p><p>I cancelled my appointment with my general practitioner; I didn't want to ask for a CT scan. I just don't want to emotionally invest more into this pain than I already have to. I don't want to involve my New York surgeon yet. I'm not sure if ever. Just not sure. Until I know if the PT is going to really help or not, I'm not going to pursue another avenue.</p><p>Going up north tomorrow to see Dov and his family to celebrate Yom Ha'atzma'ut together with the whole family, plus extended family. It's going to be very special. Looking forward, especially to holding my little granddaughter! Thank Gd for holidays, and for family.</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com3tag:blogger.com,1999:blog-2464163302553827777.post-84545787728490971012022-04-25T21:06:00.006+03:002022-04-30T20:48:19.197+03:00Hi. I'm back.<div class="separator" style="clear: both; text-align: center;"><br /></div>"...I felt that the trip [blog] had ended itself; had reached some psychological conclusion, had simply become complete, like the last page of a novel." (from the book "Tracks" by Robyn Davidson)<div><br /></div><div>I stopped writing because life was much more simple after I healed from my big New York surgery. I was working at the gold/silver smithing job, and I wasn't in pain. I wasn't in pain after that very successful surgery. It was quite literally a miracle in my eyes. I didn't <i>need</i> the blog anymore to get out the hard stuff that plagued me for so many years after I had NF. Life had become better by a lot.</div><div><br /></div><div>Fast forward to about six months ago.... yes, we are skipping lots of time in the life of Sarah and family, but that's OK. You understand. Life went on pretty smoothly. My kids are doing great, all of them, my grand daughter is now a year and a half old, my husband Robert is in a good space, and we are truly blessed.</div><div><br /></div><div>But pain has re-entered my life sphere. My body, to be exact.</div><div><br /></div><div>It's about three years since my life-changing surgery, and pain has slowly been creeping back into my life. It's been downright depressing and difficult again. I can still do my work-out at the gym (where I try to go three times a week), but some things are more painful.</div><div><br /></div><div>I had thought my left hip was going, as my right one had done two years ago when I had it replaced. But it's not joint pain. It's nerve pain, or scar pain right at the top of the hip bone, where the painful part of the skin graft always was. I went to my orthopedic-oncologist about a month ago, and he diagnosed me with bursitis and advanced arthritis. He prescribed three months of rigorous physical therapy, then to come back to him to re-evaluate the situation. So I am now in physical therapy with two different physical therapists, both young, both had not heard of <a href="https://en.wikipedia.org/wiki/Necrotizing_fasciitis" target="_blank">Necrotizing Fasciitis</a> or <a href="https://familydoctor.org/condition/pigmented-villonodular-synovitis/#:~:text=Pigmented%20villonodular%20synovitis%20(PVNS)%20is,the%20bone%20around%20the%20joint." target="_blank">PVNS</a>. They both have different ideas of what might be wrong. But I'll do what both of them say as long as it doesn't contradict one another.</div><div><br /></div><div>But I don't think physical therapy will solve this problem. I think a few things:</div><div>1. that I have adhesions from the big abdominal surgery which went to the hip</div><div>2. that the remainder of the mesh is what is causing part of the the pain again</div><div>3. that the hip bone pain might be referred pain from my belly where lots of things were moved around and cut and sewn up again.</div><div><br /></div><div>I am going to ask my GP for a CT scan of the area and send it to my surgeon in New York. I might even go see him this summer if we decide that is what is needed. I think he is going to want an MRI, and I'll have to jump through hoops here, again, to use a referral from him to get an MRI here in Israel.</div><div><br /></div><div>That's the plan... physical therapy for the time being, and diagnostic testing.</div><div><br /></div><div>I feel like I've been around this block too many times. It's downright depressing. So far I've managed to keep my spirits up because a lot of good is happening in our lives, but pain really puts a damper on life.</div><div><br /></div><div>Once again NF is the gift that keeps on giving. I think it will never come to a real end, that pain is always right around the corner, if not this year then next, or the next. I write to people on my NF support group, when they talk about their issues and pain, that I'm not going to lie, pain and troubles follow us after we've had this disease. But I always write to them with an upbeat tone, that it gets better as time goes on. I'm one of the people who have been the longest- term survivors, so I often try to write words of wisdom. Sometimes all I can do is commiserate, and that has it's therapeutic place, too.</div><div><br /></div><div>I have totally given up horn playing. Forever? Who knows. There are many reasons for it. I'm just too much of a perfectionist when I pick up my horn, its not emotionally feasible. I still fanaticize about my 13 years in the orchestra.</div><div>I am trying to restart my doula practice. It's going slowly, but that's OK, because...pain.</div><div>I am still doing the silver/gold smithing job, and I usually really like it. It gives me a good framework to get up every morning and go to work.</div><div><br /></div><div>So, life is complicated again, and I feel depressed about the pain, but lots of things are really good. </div><div style="text-align: center;">Lots of things. </div><div style="text-align: center;">Baruch Hashem.</div>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com3tag:blogger.com,1999:blog-2464163302553827777.post-90089466481662295922020-11-04T19:43:00.004+02:002020-11-04T19:43:41.226+02:00I'm back, and I'm a grandma<div class="separator">One thing this world can count on is that changes will happen. Nothing stays the same for too long!</div><p>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.</p><p>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 I wouldn't get there before 9pm or so. I got there at 9:15pm.</p><p>The contractions had been coming since the night before, so when I got there, 24 hours after she had already been having contractions, she was very tired and getting discouraged. But she was strong and the baby (from the monitor) was doing well, thank Gd. Achinoam's mother was there, too, and because of Corona the midwives wanted one of us out of the room, only two people accompanying the laboring woman. Since one of them was obviously Dov, the mothers had to sort of take turns being in the room. They didn't want us to switch off; they wanted it so that they are exposed to as few people as possible. I knew that Achinoam wanted her mother there really more than me, so I kept back a lot. I waited in the hallway, or in my car, a lot. I wanted to give her the space and privacy she wanted. I was in there for a few hours here and there, I did some massaging, and reflexology, but much of the time I was supporting by just being there, even from behind a wall. It was a learning experience for me.</p><p>The baby is a beautiful girl. She seems to have Achinoam's black curly hair and Dov's big puppy dog eyes. I'm completely in love. I can't wait to see them again! I think we are going up on Thursday when they name her.</p><p>I think I haven't updated about my newest undertaking, which I've been doing for about a month now... I joined a college called "michlelet laledet"; birthing college. I decided that I wanted to renew my doula license, to get certified for childbirth education, and learn more about supporting breastfeeding moms. I signed up for a course. It was a big step for me, to finally make a decision that will move me forward, but I realized that I can't do anything with my birthing knowledge and career until I recertify, and get certification for teaching pre-natal classes. You see, I gave my pre-natal classes many, many times in the past. But 13 years ago when I was actively working (before NF got me, and even afterward for a while), the national health insurance wasn't giving any cash back for private birth prep classes or doula care. Now they are. Things have changed, couples can get a refund for private birthing care now. So, I really need certification if I am going to be able to provide couples with the care they need and have them be able to get their money back from the national health insurance. So, actually Robert found this college on-line, and even called up the founder of the program to see if it's right for me. It was, and is. I've had three classes already. It's on Mondays, and will go on for about a year. At the end I'll get all my certifications I am looking for. Then I can get back into business! One step at a time, gradually, I am coming back. </p><p>That reconstruction surgery I had last summer at New York University in Manhattan was a miracle for me. I am not in any abdominal pain except twinges every now and then. And my scars, well they aren't skin grafts anymore! They are large, but just scars. And out of all of the scarring, only one inch of it (one inch!!) keeps getting rashes and itchy. It's the same place that there used to be rashes on the skin grafts. Interesting, there must be something active under it that is making it get a rash on it a lot. I just treat it topically and go on my way. Compared to what it used to be, this is small potatoes!</p><p>And my hip is getting much better. It still hurts with certain movements or overuse, but it is getting better. When I go out for a long walk it is actually the *other* hip that winds up hurting me, not the one I had replaced five months ago. I am not going there. I know that one has to be replaced also, I just can't handle another setback and all that pain again. I will put it off for as long as I can.</p><p>I am still doing the silversmith training, and very much enjoying it. I made a silver engagement ring with a cubic zarconia over the last few weeks, and now I am working on making a case for a mezuzah (the tiny scroll that Jews put up in their doorways) out of brass and silver. It is a very nice work environment, it's theraputic for me. It is very much like ongoing occupational therapy, just very focused on one skill- silver (and gold and all other metals) smith-ing. Here are pictures of the ring I just made:</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrHqtCCOExRyUCMUR-4ejv0NxTVv2G-MRoC6EIUa9PFfhY_3K0TdZrIY6emdTHxHE_dWUChjCWV80GbFt6AbwCebJCnErhXFNwkkq0iUlndLxsfPyITLLsP-GmtegaliBXPxt-CXhrij8/s2048/silver+zarconia+ring2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrHqtCCOExRyUCMUR-4ejv0NxTVv2G-MRoC6EIUa9PFfhY_3K0TdZrIY6emdTHxHE_dWUChjCWV80GbFt6AbwCebJCnErhXFNwkkq0iUlndLxsfPyITLLsP-GmtegaliBXPxt-CXhrij8/w300-h400/silver+zarconia+ring2.jpg" width="300" /></a></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFRCFF8VbSB1gJSlrQE6Z_QdGFGD4uaydQDv8Fsjw0GtRyfcCwSgIfOgCm-SJVLQXiZWxJNu5G5aR89qoRFdGFmxg8gPpko_E1iTLfda_hR7iXJkAv7JX0O6uFFbdI4bhYxIdNMxnVWfI/s2048/silver+zarconia+ring.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFRCFF8VbSB1gJSlrQE6Z_QdGFGD4uaydQDv8Fsjw0GtRyfcCwSgIfOgCm-SJVLQXiZWxJNu5G5aR89qoRFdGFmxg8gPpko_E1iTLfda_hR7iXJkAv7JX0O6uFFbdI4bhYxIdNMxnVWfI/w300-h400/silver+zarconia+ring.jpg" width="300" /></a><br /><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;">And here are pictures of the new baby! Be still, my heart. She is gorgeous, the photos don't do her justice. These were taken about fifteen minutes after birth. She was born 3.3 kilo (about 7 pounds).</span></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuKCbakqHEs_aSKLP5tgNfmCeRVOf4HlHBhOCz0c4vWqnQ2iSwKaQhKCMQ6dWkP1MRJ6l5EWxgEey_yWaCyK6_ge6UbcEP_GpIK7Tq8rJmVeaLCYS-bUx2NwT5tQw1P1EfXCMEM_YiUhM/s1600/baby+girl.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuKCbakqHEs_aSKLP5tgNfmCeRVOf4HlHBhOCz0c4vWqnQ2iSwKaQhKCMQ6dWkP1MRJ6l5EWxgEey_yWaCyK6_ge6UbcEP_GpIK7Tq8rJmVeaLCYS-bUx2NwT5tQw1P1EfXCMEM_YiUhM/w300-h400/baby+girl.jpg" width="300" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Princess just chilling on daddy's chest<br /></td></tr></tbody></table><span> </span><span> </span><span> </span><span> </span><span> </span><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRwLtIz0d90maNAoKtS3u0O9PWqQkgsKTrU3kSo652lbrwTU4wxPNkwjb_W6g4Ajjx2IfGVtVODfi-rN5VAmCpf-wUdxinCsGzMjyZhibUyb57F1_BNK1cTi_CuGb795F2FeEr01l0tKo/s1600/Dov+and+baby+girl.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRwLtIz0d90maNAoKtS3u0O9PWqQkgsKTrU3kSo652lbrwTU4wxPNkwjb_W6g4Ajjx2IfGVtVODfi-rN5VAmCpf-wUdxinCsGzMjyZhibUyb57F1_BNK1cTi_CuGb795F2FeEr01l0tKo/w225-h400/Dov+and+baby+girl.jpg" width="225" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">When the midwife handed Dov his baby, <br />he opened his shirt<br />so she could rest her face on his bare chest<br /> and feel comforted.</td></tr></tbody></table><div style="text-align: center;"><br /></div><p style="text-align: center;"><b>~.~.~.~.~.~.~.~.~.~.~.~.~.~.~</b></p><p>I don't know when I'll write again, it is very sporadic at this point as you've noticed. My needs are very different now, and keeping the blog is becoming less and less necessary for me. Thank Gd my medical dramas and traumas have *vastly* decreased, and as you can read here I am getting some new goals and directions in my post-NF life. It took 13 years of not working, and lots of blood, sweat, and tears, lots of surgeries and pain (so. much. pain.) to get through the aftermath of NF, but I <i>think</i> I can finally say I have turned a big corner in my recovery. Sarah is coming back. Different than before, and not playing horn (at least not now), but delving into the birthing work. This, I can do.</p><p>I will bid you farewell for now. No promises on when the next blog will come out. I'm playing it all by ear. 😉</p></div>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com3tag:blogger.com,1999:blog-2464163302553827777.post-39625371504430625902020-09-03T21:12:00.004+03:002020-09-03T21:27:26.716+03:00The stairs and the anguish<p> We just had a really hard conversation. We've had this particular conversation before, but not in a while. It's about our house, and it's about my health. Our house is, in my opinion, beautiful. It's large- 10 and a half rooms. It's on four levels, lots of stairs. In the passed 13 years, after numerous surgeries, I have gone on the stairs on my tush (after four hip surgeries), with crutches, a folded-up walker, a cane, and sometimes, in tears. Our bedroom is at the very top of the house- we finished off the attic when we bought the house, and it is a beautiful parent's suite complete with skylights, a large walk-in closet and luxurious bathroom. I really do love this house, but the stairs... my hip is still hurting me and at some point I'll need the second hip done (not any time soon!!), and I'm having some serious problems with my knee mainly on stairs or when I am working out. For years, since I had the ongoing abdominal pain, I have been saying to Robert that we need a one-level house. He is not on the same page as me, but he's also not in pain. He believes in fixing my body so it won't hurt instead of moving house. I half-agree with fixing my body, but I don't believe that I will be out of pain. True, the abdominal surgery I had last summer in New York worked to alleviate that intense pain, and I am grateful for that. In the middle of it I thought it'd be forever.</p><p>One main thing is that I am four months after hip replacement surgery, my hip still hurts, and my knee hurts....I've been through SO MUCH health-wise, I can't deal with the idea of another surgery. Robert thinks that if the orthopedist says I need knee surgery (I'll see the orthopedist in a few weeks with my MRI) then I'll just do that and all will be fine, I'll be out of pain. I know this is not necessarily so, especially with knees. I'll reiterate- I can't deal with another surgery. I just can't. I don't know if I'll go do a knee surgery if the orthopedist says he can do some procedure and the pain will go away. Nobody can promise the pain will go away. It's not for certain I'd go do another surgery. I'm really traumatized by having been through so much, I just can't do it anymore. I've had like 13 surgeries or something- I lost count (only three were life saving surgeries, and one had an induced coma afterward). Some time I'll list them in a blog in chronological order. The point is that this hip replacement surgery was kind of the straw that broke this camel's back. No. More. Surgery. (unless it's life threatening G-d forbid). I am doing all sorts of things to prevent having to do more surgery, but it's not helping my knee problem (which I'm not even sure what the problem is yet). I go to the gym three times a week (once I work out with a personal trainer, once by myself, and once in the pool), each time I do 10 kilometres on the stationary bike with resistance. I also take vitamins and a healthy joint supplement, and I eat healthily. I'm doing what I can.</p><p>We started talking about moving cities, if we're already going to look for another house. We love it here in Be'er Sheva, and we love our house, so it's a hard conversation to have. My oldest son and his wife are living up north, about a three hour drive from here, we could move closer to them, but who knows if they will stay there or not. Anyway, I'll see the orthopedist in a few weeks and take it from there. We could maybe install an elevator in our house, or a stair-chair thing. I don't really want to do that, but it's an option.</p><p>Meanwhile I am going three to four mornings a week to silversmith training, and I just finished my first thing that will be sold in the center where I work- a silver ring decorated with silver twisted rope (which I also made). I am proud of all the things I make, it is so much work, you'd be surprised. I like it though- especially soldering. Hand me a blow torch any day!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuEDknRjtgGfCJJMVS5-UpqJLNZJsmcFnx7WPSo79bOrHzuUUkTfzwilUPMlmoEuygFVMY5kJwgd0PrwbQYMggWVZUbNc5vBx8pR2USvvAzXHVYrW3i6adNyufEOXQsTRd2_ZzMU_GgIw/s2048/silver+rope+ring.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1152" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuEDknRjtgGfCJJMVS5-UpqJLNZJsmcFnx7WPSo79bOrHzuUUkTfzwilUPMlmoEuygFVMY5kJwgd0PrwbQYMggWVZUbNc5vBx8pR2USvvAzXHVYrW3i6adNyufEOXQsTRd2_ZzMU_GgIw/s320/silver+rope+ring.jpeg" /></a></div><br /><p>That's it for now. Well, there's more, but I'm not at liberty to discuss it-- issues with one of my kids. I'm very worried about this child. Hashem give us clarity and strength! </p><p>Azriel is starting to dorm next week (9th grade), that will be interesting. Never a dull moment around here. Well, increasingly there are dull moments, but that's OK too. He'll be home Wed nights, and learn on Zoom Thursdays. No school Fridays for him anymore. (But the first day of our work/school week here in Israel is Sunday).</p><p>Signing off for now. I can't believe Rosh Hashana is around the corner. I'm not ready. But I'll get ready!</p>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com5tag:blogger.com,1999:blog-2464163302553827777.post-34853959892392518692020-07-31T17:52:00.000+03:002020-07-31T17:52:26.810+03:00Time to just beI have been trying to start this blog post for some time now. I've been looking for a way to say something really hard for me.<div><br /></div><div>First of all I'll start off by saying that the hip replacement surgery/recovery is going pretty well. I still have pain, but it is less and less every week. I stopped physical therapy, it was not right for me- it hurt me too much and the physical therapist wasn't listening to me. My doctor said I didn't need it anyway, it was my idea to do some physical therapy. If I can be consistent in going to the gym that will be enough. Thing is, I haven't been consistent about going to the gym. Truth is I've been practically inactive. I'm fed up with my leg hurting, although I know I need to work on it, but it keeps me feeling like I just don't want to bother anymore with getting in shape and staying healthy. I don't know if it's because of Corona that I am feeling so non-mobile, tired all the time and slightly depressed. I should get my blood tested, often after surgeries I'm anemic, that could be influencing me.</div><div><br /></div><div>I am back to my Jewelry making course/job. It's a course and a job. My training is almost finished then I start to work on things that the center will sell. I recently finished a set of a pendant and earrings; it was very challenging! I made it from scratch, with sterling silver this time. Here's a picture:</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibjI4QZWvrUiSTPOuvtHNNs6-4f706jwYxDbkhkClrmfSYWfayCOq-pdyEOVvB_bWZYIF94_8qP1PUwfXQiU5mFWvzdTbSbpQQ0TsCwT-NH9DL-wEpc7dAe8EpWo3nAeWpmnMzQpBjaJ0/s2048/pendant+and+earrings.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="512" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibjI4QZWvrUiSTPOuvtHNNs6-4f706jwYxDbkhkClrmfSYWfayCOq-pdyEOVvB_bWZYIF94_8qP1PUwfXQiU5mFWvzdTbSbpQQ0TsCwT-NH9DL-wEpc7dAe8EpWo3nAeWpmnMzQpBjaJ0/w384-h512/pendant+and+earrings.jpg" width="384" /></a></div><div>All kinds of soldering and filing and soldering again. And all the solders have to be a different melting point because there is a risk of loosening other earlier solders while doing more than one solder. This was a hard project, but I did it! I had a couple of mistakes along the way, but my teacher helped fix them. I'm kinda proud of my creation. :)</div><div><br /></div><div>I don't know how long I'll be in this job, I see it as temporary, but it could be longer term. It's up to me. At this point it's only three days a week, mornings until 12:30. That's OK though, I don't want to work full-time. This body has been through so much, I need to rest more than other people, I think. It leaves plenty of time for me to go to the gym, though, I just have to *get* there.</div><div><br /></div><div>The hard thing I've been avoiding writing about is this....</div><div><br /></div><div>I've decided to quit playing horn.</div><div><br /></div><div>It's been one of the hardest decisions of my life; I always go back to horn playing no matter how long the break. I did quit once before for two years after I finished undergraduate school. I needed a break from the pressure of being a scholarship student and needing to play for a jury once every three months to keep my scholarship. Lots of pressure there. I started again though after two years, and was quite successful. Then I went to New England Conservatory for graduate school. From there with my fresh master's degree in hand, I made aliyah to Israel and got an orchestra job here within the first two weeks of being in the country. I only left the orchestra to concentrate more on my doula practice, which was booming at the time. Two weeks after I tendered my resignation, I got sick with NF after a hernia surgery. I had to stop all work eventually, and totally stopped playing horn *and* my doula work because of my health problems. I started and stopped a few times within these 13 years that I've been dealing with health problems. I joined a volunteer orchestra, and that was good for me for a while. But honestly it's not enough to keep me going. </div><div><br /></div><div>Last summer I had my big abdominal surgery and things have never been 100% right since. I mean, in the big picture there has been tremendous improvement in quality of life; my abdominal pain I had day-in-day-out is gone, but I still have some abdominal pain when I play, and that's not going away, I've felt it for a year now. I have resigned myself to that fact that it's not going away.</div><div><br /></div><div>I was playing consistently through the Corona lock-down and everything, and then I stopped playing the day before my hip replacement surgery two and a half months ago. I have been just avoiding starting up again. I've been doing a lot of soul-searching about this, and I realized that for a long time now I haven't enjoyed practicing at all. It is a burden to me, and I watch the clock when I do practice. I've decided not to start up again. It is just so hard for me with no real goals to play for. It feels like a marriage that is breaking up, not because the two parties don't like each other, but there is no love. It's friendship on the good days, but loveless. I have decided not to do the things that don't give me joy. Thing is it leaves a big hole for something else to come up. I did the two week bituach le'umi (national health insurance) professional evaluation, and on Sunday I have a meeting to see what their suggestions are for what direction a possible new career can take. I'm not sure what I'm going to do. I have a lot of free time on my hands, and I rest a lot. Life is certainly different than how it used to be. Before I got sick, I would have never guessed that I'd be 52 with no career and not much work. It's very strange, and can be disorienting.</div><div><br /></div><div>But stopping playing horn is the big news. I'm sad about it, and relieved at the same time. Sad just like someone going through an amicable divorce. Me and my horn have been together since I was 10. It got me places, got me many things. I was respected at the job, and I felt self respect also. In a way I wish I never left the orchestra. But getting sick I might not have been able to play anyway. In fact I know I wouldn't have been able to. Many years I dealt with health issues and one surgery after another after I had NF. </div><div><br /></div><div>So here I am, open to possibilities, but at the moment satisfied to have a lot of time to rest and just <i>Be</i>. Sometimes I feel a little unhinged by it all, though.</div>Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com7tag:blogger.com,1999:blog-2464163302553827777.post-11299828443762397202020-06-16T19:33:00.000+03:002020-06-16T19:38:43.573+03:00The six week markSix 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.<br />
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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.<br />
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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.<br />
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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.<br />
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....<br />
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<br />Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com1tag:blogger.com,1999:blog-2464163302553827777.post-9323838954665151432020-06-01T20:25:00.000+03:002020-06-01T20:25:22.019+03:00Post-op one monthHip replacement recovery is going pretty well. I am still having pain, and taking medicines against the pain, but it is improving. I can do stairs much easier now, too, and I just started to walk around without the cane. What is the reward for improvement? Harder physical therapy.... my physical therapist worked me much harder and longer today, and I'm so sore.<br />
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I am back to making dinners though when I can. I can stand and cook for a half hour or so, and having cooked meals around is very important with three kids home. They are constantly hungry.<br />
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I am getting better, and it's time to revisit what am I going to do for the rest of my life. I wish I still had my careers, but the truth is I just don't. I can't live for who I used to be, I have to focus my eyes forward and go from here. Truthfully I feel like I've just lost all my ambition, all my strive. Nothing interests me anymore, and I feel awful about that. I have spent too many years out of the work force, and I lost my ambition. I have had so many health challenges that it just kept me out of the game.<br />
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I plan to go back to finish the two-week evaluation at the national health service (Bituach Leumi), then go back to the Jewelry making job. But that's not for the rest of my life. It can be for a number of years if I want it to be, though. I will get back to practicing horn, but somehow between these last 13 years of not playing professionally I lost my drive. I need a goal to play for something specific. I will re-join the Gedera community orchestra that I was playing in before Corona hit, but that's a few hours once a week, and not on a high level. It is fun, though. I like the people.<br />
I cannot work full time at this point in my life. My body has just been through too much to make that happen. Robert keeps encouraging me to go back to my birthing classes, but like I said, I lost my ambition.<br />
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I do plan on doing birthing classes for one very special couple, though, in the coming months... Dov and Achinoam are expecting. :) I'm going to be a grandma, please G-d! That is exciting.<br />
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Life is so complicated. On the one hand I still have three kids at home, but they are of the age that I don't have to take care of them all the time. On the other hand, I have lost my careers to health crises, and I can't ever get them back. There are twists and turns to life that can be very upsetting and depressing, but there is also so much goodness. I can't live for who I used to be. I can't work full time anymore, and I have no ambition to get things going for myself. That's where I'm at, and owning it will hopefully help me to move on. Healing more from this hip replacement will also help me move on. Everything at the right time. I look forward to getting back to the schedule of the Jewelry making job in the morning, the gym and practicing in afternoons, making dinners every day and feeling like my life is worthwhile every day. Right now it's challenging to remember that my life is worthwhile. It's challenging.Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com1tag:blogger.com,1999:blog-2464163302553827777.post-70566493455247822292020-05-22T18:23:00.002+03:002020-05-22T18:23:42.894+03:00Post-op day 16This is a hard surgery. I don't know if it's particularly hard for me because my body has been through so much, or it's hard because it's just hard. I'm still taking regular pain medications. But I'm still in a lot of pain. It's early still, though, I have to be patient with myself. I'm really not great with patience.... I worry that something is wrong when I get specific pains. Also I fell down the stairs (in my house) a few days ago. I was worried that I damaged something, so I called my doctor to report the fall. He wanted to see a video clip of me walking, and I sent that to him. He said I wouldn't be able to walk that well if something happened, so he thinks I'm fine. When I go in for my post-op appointment in June I'll need an x-ray, so I'll be more at ease when he looks at the x-ray and tells me everything is OK. The hip replacement itself feels loose, I don't know how else to describe it. I feel it sort of wobbling around inside me. I don't know if that's a normal feeling or not, I've been trying to find out on the internet, but not getting clear answers. But like my doctor said, I probably wouldn't be able to walk if it really came loose, maybe it's just a feeling I have to get used to, that that is the new hip feeling.<br />
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Mainly I have to get stronger. I've lost a lot of strength between Corona lock down with the gym (my swimming) being closed down, and then this surgery. I had physiotherapy today- Thursday- and it was hard. I rode the stationary bike for 15 minutes and did stairs without holding onto the banister (spotted by the physiotherapist) one foot each stair. It's not as easy as it sounds these days. My right leg- the one that had the hip replacement- was shaking with muscle work by the time I was done.<br />
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Many friends have come to visit, I so appreciate that. Sometimes we chat while I'm chilling out in my bed, and sometimes I'm downstairs or sitting with a guest outside. I really do better when people come visit. It's a real thing, what is called "bikur cholim" in Hebrew, it means visiting the sick or infirmed. It makes a big difference!<br />
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I am very tired of being in pain and needing to recover. I know it's only been a few weeks, and I need to be more patient, but it is so hard to not be able to do the things around the house that I want to be doing. Now it's Friday, and Fridays are notorious for the cooking and cleaning that has to be done for Shabbat. I have given up on a lot of my standards, and that feels bad too. I remember when my mother was sick in bed for four years- she didn't walk at all and only went from her bed to her chair and back again, by use of a hoyer lift -a mechanical contraption that holds the patient in a sling while transferring the patient. I remember visiting and seeing the house in a state that she would not have allowed.... books and papers all over the place, the kitchen not organized how she had it organized, etc. I realized that she doesn't know, had to let it all out of her hands. She didn't know that the house was in disarray, and I think she needed not to know. I, however, know. I am downstairs more now, and yes, the floors need to get cleaned and so does the kitchen. The table needs to be set, salads made, etc. It is so hard to be out of commission, and I have compromised on many, many things about how I want the house (and food) to be, especially on Fridays. But it's soooooo hard. I have been through SO much these past 13 years, this has been a hard-learned lesson. And each time it comes around again it's hard all over again. Surgery sucks. Pain sucks. I want to be in control of my life, and I am very restricted.<br />
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I know I have to look at the half glass full, and believe me I try most of the time. To look at a white table cloth and see that it's white, ignoring the stain in the middle. I can pep talk my kids to keep their chin up and look at the bright side, but here, on my blog, I am here to say that it is *hard*. But it's all a life lesson. Sometimes I have very deep life lessons to learn, it's overwhelming. But that is what we are here in this world to do, learn and share with others life's lessons. These surgeries and recoveries teach me a lot about patience, listening to my body (not as simple as it sounds), and compromising on how I think things should be. It's a constant reminder to let things go that aren't the most important. My family is healthy, there is no fighting in the house, and I am calm. That is what is most important.<br />
<br />Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com3tag:blogger.com,1999:blog-2464163302553827777.post-57094965345179347062020-05-08T14:39:00.000+03:002020-05-08T14:39:54.115+03:00Post-op day threeIt hurts a lot more than I was led to believe. Wow.<br />
But I have a new hip. Hopefully the pain will go down quickly. But many people said that the pain is minimal and the benefits outweigh the initial pain.... I'm counting on that!<br />
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The hospital stay was fine. I went to a private hospital where there are no Corona patients, and that was the right decision. The nurses were so nice, except one who got mad at me for not wearing my mask. You see, what happened was that after I got out of the operation, I immediately had a sneezing and stuffy nose cold. It's freezing in the O.R., and I got a snuffle from that. I was sneezing non-stop, and I couldn't keep my mask on. I had a shared room, and they got annoyed with me for sneezing and not wearing a mask, so they transferred me to a private room. Oh, the shame. Snoring lady was then on her own. :) So I had a private room and that was nice. I still didn't sleep much, who does in hospitals? But I had a quiet night at least. I went home the next day. My oldest son who is in the army got a 36 hour leave because of my surgery, so it was great to see him and his lovely wife. Too short a visit, but a treat nonetheless.<br />
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I had this surgery under local anesthesia (spinal block) and a "twilight sleep", and it was a very good combination. I highly recommend it, actually, if it is an option. I don't have that medicine from the general anesthesia in me, and the spinal block took it's time wearing off, so I had good pain relief after surgery. I think it's a healthier option. I was worried I'd wake up, but no way. It was good.<br />
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The pain started pretty much as soon as the spinal wore off, though, obviously. I was home by then, walking on a walker. It is quite painful, and I've gone through trial and error with pain meds, but in the end what the doctor recommended is what is working...today. I didn't add anything to the mix and my pain is less today. I mean, it has to get less eventually, right? Today I am three days after surgery...not a lot of time. I have to be patient.<br />
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I truly truly hope this is my last surgery. It is so hard. I mean, I know my left hip may need a replacement at some point too, but Hashem can preform miracles and make that not happen, right? I don't have to think about that.<br />
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Soon I'll be out of the post-op infection window-- around four or five days after surgery. That will be another level of relief. I've been keeping close tabs on my symptoms, and the pain is not infection, it's regular post-op pain.<br />
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I just don't ever want to go through another surgery. Never. Please G-d. It's just so, so hard.<br />
The kids have been great, though. Last night Azriel made me sushi because I said I was in the mood for it! And he came up here and ate with me, that was really lovely. He's such a great kid, B"H.<br />
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Just no more surgeries. Amen.Sarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com1tag:blogger.com,1999:blog-2464163302553827777.post-73507313306143603872020-04-30T17:01:00.000+03:002020-04-30T19:09:52.857+03:00New bionic hip next week!Remember in my last blog I said I was going to the orthopedist the next day?<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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 <i>at all</i>. 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.<br />
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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.<br />
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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).<br />
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This will be my fourth hip surgery. Fourth, yup. Two on my left hip for the <a href="https://en.wikipedia.org/wiki/Pigmented_villonodular_synovitis" target="_blank">PVNS</a> 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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(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 <a href="https://en.wikipedia.org/wiki/Tikkun" target="_blank">Tikun-</a> 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.)<br />
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Sarah Rachel bat TovaSarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.com2