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.

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. :)

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.

building bridges

There have been a lot of holidays happening around here, it's that season. We've had lots of guests and have also been hosted. It's been mostly good, thank G-d. It's been a lot of shopping for food, cooking, setting up, cleaning up, repeat. (...and it's not over yet.)

I've also been practicing horn, and also put an ad out for my birth preparation course. I am realizing I can't just pick up where I left off, there are bridges to build. I put ads all over Facebook, and haven't yet gotten any responses. I'm going to have to work harder on advertising. And as far as my horn practicing... oy. There are problems in paradise.

I always dreamed for the time and ability and health to return to my horn. Well, I have those things now, and am returning to my horn, but I sound *awful* most of the time, and don't enjoy myself playing because I don't have the control of the instrument I used to have. I don't have the range I used to have, or finesse. I know that will come with time, but like I said, I have bridges to build. It's not going to come easily.

Also, unfortunately it seems that strengthening my stomach muscles (for playing horn) after my big surgery isn't going to go as smoothly as desired, either. My lower left belly (where Gapey used to be) hurts when I do any strenuous playing-- like working on my high register. I just can't do it, my surgeon doesn't want me doing anything that could cause pain, and this is causing pain. So I take a lot of breaks, but I'm not sure if it's just a matter of time before the pain will stop, or if This Is It, I can only play horn to a certain extent until it hurts, then I have to stop. It's nothing like the pain I had before the surgery, it's just a little sharp twinge-y feeling. But it's pain and it's here to tell me something. Take a break. It could be that with time this will also go away, I don't know. I hope so. I'm not rushing to any orchestra work, I can't, I don't have my level of playing back. But I would like to get to that level again, some day.

It's holiday season so many things have to wait until all the holidays are over. Seeing any of my counselors has to wait, which means the mechina course I am considering taking has to wait, also. That's the pre-nursing school plan course for five months, to hone learning skills again to get ready to go back to school. I don't know if I'm going to do it- nursing school. It seems almost too challenging for me. My kids tell me I can do anything (they are mimicking back to me what I tell to them when they are discouraged), but I'm not so confident. I told them that I say that to them because they are young and just starting out in life. But then my daughter said back to me that if she was 50 and I was 85 wouldn't I tell her the same thing? Yes, I would.... so why am I not listening to myself? I don't have the confidence that I can do this nursing school program. I don't actually have the confidence that I can do anything these days... that's my main problem. That's the main bridge I have to start building- the one that I believe in myself more.

My sleeping is a bit better, but still not what it should be (and has been up until recently). I saw my psychiatrist about the sleeping problems, and she didn't want to change any of my medicines at all, just suggested to use my Cannabis for help sleeping. OK so I've been doing that, and it has helped a bit, but it's not predictable enough. It kicks in at different times (I'm taking the oil at the moment, not smoking it- it makes me cough too much), and isn't a reliable source of a good night's sleep. I have to keep experimenting with it. I also need to ask my neurologist to renew my licence, it's expiring soon. Anyway, that's what I have at my disposal for the while. I guess it's good not to add new pills, and side effects, but the cannabis isn't so reliable either.

My restless leg syndrome (RLS) is acting up something fierce. It reacts with changes in my medicines, or as a side effect to one of my medicines. Robert and I discovered that RLS can definitely be a side effect from a specific medicine I take, so I decided to cut it in half and see if it makes a difference. It'll take three or four weeks before I know if that's helping.

All-n-all, I'm struggling with self-confidence that I can start up anything these days. That's just the stage I'm at I guess. It's frustrating. I got so sick at such a young age, and stayed sick for so long, that starting up anything now seems too hard, but I'm still young. My days are quite unstructured and aside from taking care of the kids my days are pretty empty. I need to build bridges from where I left off my working days, to twelve years later. Not simple at all. Day by day, I'll get better at this, I hope.

Dealing again with loss of a loved one

I'm going to New York in the morning (Thursday morning). My cousin passed away, at the young age of 64. I was with her for her birthday in July, she was so alive, then the cancer took over. We were close. Things fell into place here regarding timing, so I'm going. I feel the important need to support my 98 year old aunt, who is her mother. It's just awful awful awful. My aunt is my father's older sister, 100% lucid and lived long enough to see this tragedy unfold before her eyes. It's horrible, just horrible. A parent should never bury a child, especially at her age.

~ ~ ~ ~ ~ ~ ~ ~ ~

My abdominal pain is gone. I can't thank the Good Lord enough for that fact. That's why I can fly tomorrow. My surgeon said we'd have to wait at least until four months after surgery to pass to know if the abdominal pain is really gone, but I can tell now that it's gone. There is no more Gapey, no more mesh and clips, my body looks normal. I still admire it in the mirror when I catch a glimpse.

I am 11 weeks after the massive reconstruction surgery now, and I am not in pain. Well, I'll preface that with the fact I'm not in abdominal pain. I have been getting increasing hip pain, where I had the PVNS. I probably need another MRI for that, and perhaps another steroid shot into my hip. My knee on the same leg is also hurting when I go up and down stairs (which is a lot if you know my house). I made appointments with the appropriate orthopedists, but they are not soon.... a regular orthopedist for my knee is in December, and orthopedic oncology isn't available until January. That's a lot of waiting with pain, but I'll push through.We have a wedding to plan and dance at!

I do have other news, about the nursing school dream...

I spoke with my social worker about it, and she told me about a program that starts in November, and goes for five months, specifically for people who want to return to university later in life, to hone learning skills and train yourself to sit and learn again. It's called "mechina" in Hebrew, which is simply a "preparatory course" for the next step, whatever that might be. It doesn't count towards nursing credits, but rather helps hone general skills. I am very enthusiastic to do this program, I think it would be a good stepping stone for me before diving back into university. At the end of the course is a career counseling exam, where you find out what careers are suited to you. It sounds perfect for me. It's also paid for in full by Bituach Le'umi- the national health service, as a career re-training step. I'll know more after I meet with the person who runs the mechina, which might not be until after Rosh Hashana. Everything at the right time.

That's my life in a nutshell....mostly good things to report with a tragic thing happening parallel. I am very torn up that my cousin is gone. I can't believe it, honestly. I'll believe it soon enough.

Hashem works in mysterious ways. I just can't wrap my head around it.

To dream the impossible dream?

Truth is I'm daring to dream again.

I have recently been dreaming about going back to school and becoming a nurse.
I've had awesome nurses and some awful ones. I know the difference better than most people.
Can I do shift work?
Can I be on my feet that long during a day?
Can I learn again in school, like do I have the capacity to go back to school and learn?
Will I get a job at this juncture in my life?
Really, nursing?

Yes, I do want that, but those questions remain unanswered. I mean,

how much of my health am I regaining? All of it? Part of it?

I know I'd be a great nurse, but I also know the education is brutal (I have a friend who did it at around my age), can I learn in a university in Hebrew? How active is my brain, what is my potential? It could be that going from here, from this point in my life, leads me to a big question mark.

Daring to dream... it's been so long. Will I actually do it is a whole other question.

I've had this post cued up to publish for two days now...it's scary to put your dreams out there! I feel in my gut that I need to do this but I'm so scared. There is a program at my local university to learn four years of nursing in two years. It's a tough program, my friend did a similar program. I can do tough, though, I've done lots of tough. I think I can do this. But I'm not sure.

I've had this dream since before I had NF actually, I wanted to become a midwife, which means first you have to be a nurse. I looked into it 13 years ago. Now I'm older and wiser....... and I have no pain. I can do anything.

(in two weeks I start playing horn again...my surgeon said I can begin playing after the 12 week point, that's in two weeks. :)