Thursday, May 30, 2024

Reluctantly revisiting the world of pain

School is so all-encompassing that I really don't have much time to be with myself and write. I do miss that, but I'm doing something important- learning to become a nurse- and it really is all encompassing. I have a year left.

But that year may need to be stretched a bit. Time is not always in our hands, you know? Hashem makes timing for things. I used to say that to my birthing women a lot, and it helped them with labors that were long and slow. Helped me get through them with the women, also (long labors, as their doula). Hashem controls timing of things.

I decided to write now because I have a health issue I am dealing with, and it's not simple. And it could put off my graduating with my class. But, health comes first, and I have to remember that. 

It is looking like I need another hip replacement. On the opposite side from the last one. It started hurting deep into the joint some time in March, and I did some physical therapy to try to make the pain go away. It just got worse and worse over the months, and at this point, at the end of May, I am in so much pain on a 24/7 basis that I am having a hard time functioning. My 7 hour lectures in school are seriously difficult for me to make it through. In January and February I did clinicals in the hospital. It was four, sometimes five days a week, 8 hour shifts, mostly on my feet. It was extremely challenging on my body. But I made it through, and shortly thereafter my hip started to hurt. 

Dressing, bending, getting up from sitting, getting into and out of the car, and a hundred other things are very painful. Sitting at my desk at home to do my studying has become impossible. I now study in my bed, with the back up and the legs up (it is an electric adjustable bed, one of my wiser purchases in life...) I don't like spending so much time in bed- hours in the afternoon/evening- and then of course at night to sleep. But at this point, it is the only way I can study after these long days in the classroom.

The left hip is complicated though. This is why I am nervous about having the replacement. Even though I need it. Last week I went to a private hoidy-toidy orthopedist who I had never met before. Turns out that the orthopedist who did my right hip replacement has changed his practice in that he now only sees patients who have a recent recommendation for a hip replacement. Even though I was his patient 4 years ago, his secretary said he won't see me unless I have this referral from another orthopedist. OK, a bit of an ego trip here, but OK. I know he's the best. So I went to a different orthopedist so that I could get the referral for a hip replacement, so that I could see my surgeon. Crazy. But yeah, that other orthopedist was fabulous (he doesn't do hip replacements, he specializes in knees), and wrote me the referral I needed. After I sat down and told him I am in tremendous pain, and some of my background story, he said "so it seems you know you need a hip replacement, what can I do for you?" So, he did examine me, and came to the same conclusion that I have come to. I am now waiting to see my surgeon, on June 9th. At that point, I hope I will get a date for surgery that isn't too far in the future.

The left hip is where all the intensive scarring is from the NF (and from the reconstruction surgery in New York in 2019), and from the PVNS. That hip has been through two arthroscopic surgeries- one for PVNS, and one for a labrum tear, with FAI (google it if you want to know what FAI is). I am nervous about this surgery because of the possibility of adhesions that have formed, and because it is a hip that has had lots of trauma before. I don't know if this is possible, but are there old lymph nodes there that are hiding the Strep infection? The orthopedist who I saw last week was concerned about that possibility. And then there is the fact that my whole lower left belly and upper left thigh are totally numb. I do feel deep pain, but it's numb to the touch. The nerves there are all messed up, and it makes me nervous. More cutting through skin and many muscles to transplant the hip. I really really don't want to do that. The recovery, as I remember it from the right hip, is painful, and arduous.

This is only getting worse with time. Not better. I do still manage to get to the gym semi-regularly, but what I can do is limited these days. I am doing everything I can to stay strong in every other way. After having had 14 surgeries already, I need to stay strong.

I am supposed to spend July and August in clinicals; some in hospital and some in community nursing. I just wrote an email to my principal of the nursing school telling her what is happening, and that it is looking like I won't be able to do those clinicals. I will probably be having surgery then. And if, for some reason, I can't schedule the surgery over the summer, I highly doubt that I would be able to do the clinicals on this very painful hip. So, see what I mean by timing problems? I'll have to do them at the end probably. I really hope that this surgery doesn't put me back so much that I will have to join the class that began after mine. I really want to stay with my class. But we'll have to see how things go. When I have a date for surgery I'll know more about the timing of everything. 

I'm bummed out. We are also planning a trip to the US in August for a week. Don't know yet if that will happen. And I have no more vacation time other than two weeks at the end of August.

I don't want to do this surgery. But I do want to have a pain-free hip, like the right one is. But surgery is SO SCARY for me. Too many things can go wrong. But if it all goes right, then I can do nursing wth no pain. Goal.

I don't want to do ANY surgery. Surgery sucks. It sets life back. But oh, the pain. It all comes down to that. I'll write more after my June 9th appointent with my surgeon.

Thursday, September 28, 2023

Becoming, and becoming a nurse

It's been a whirlwind since I started nursing school.
Classes almost every day, tests all the time. Memorization, memorization, memorization. Learning and studying constantly. When I'm not in class I am home studying and making summaries in English of the classes (which are all in Hebrew of course). (I do try to get to the gym still, but it's more like once a week...) To say it's been challenging is an understatement, it's been so intensive and difficult for me I feel like I am just scraping by. But I've passed all the tests (so far?), and am keeping my head above water. The amount of learning 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.

Two more years to go.....

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.

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).

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.

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. :)

Friday, May 5, 2023

Changing my story

How appropriate that the last time I wrote in this blog I said "Searching for more meaning in life". That was November 2022. My search has come to a very important and exciting conclusion indeed. But before I break that news....

I did finally hear back from my New York surgeon. Finally, after a long wait. He said that the pain I have is from needing a hip replacement, that what he saw in the MRI's- his plastic surgery- all looks good. Everything is where he left it, and it really looks fine. That is good, I don't know what I would have done if he said we needed a revision. In the meantime, I 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.

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.

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.

I have done a few births in the past months. My doula work has also been very strengthening for me. One birth happened in my car 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. 😅

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.

OK, now for the moment you've all been waiting for.... what did Sarah do to get more meaning in her life?!

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.

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.

What would that be, you ask? 

I am finally fulfilling a dream I've had for many years, even before I got sick in 2007.

I am going to nursing school to become a registered nurse. Yup.

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. 

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.

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.

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.

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.

Can you believe it?

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.

Thursday, November 10, 2022

More meaning in life

 I'm OK. 

After my last blog post I got a lot of messages and calls from concerned friends and loved ones. I didn't mean to scare y'all, not to worry, I'm OK. Things are tough sometimes, but isn't it that way with everyone? C-PTSD makes things harder, for sure, but I'm doing relatively OK with that this week.

I still haven't heard from the doctor in NY. It is quite frustrating, I sent them both (the doctor and his secretary) emails reminding them that I exist and am here waiting for the doctor's evaluation of my MRI's. At the same time, I haven't called. I don't feel like calling. I 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.

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.

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.

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.

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.

I'm going to go now, I have a birth-preparation class to give tonight and I have a few things to prepare. 

Don't worry about me, things are ok. Kind of.

Tuesday, October 18, 2022

Not light reading

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 other 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.

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.

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).

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.

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.

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 Succot, 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.

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.