Friday, May 22, 2020

Post-op day 16

This 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.

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.

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!

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.

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.

Friday, May 8, 2020

Post-op day three

It hurts a lot more than I was led to believe. Wow.
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!

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.

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.

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.

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.

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.

I just don't ever want to go through another surgery. Never. Please G-d. It's just so, so hard.
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.

Just no more surgeries. Amen.

Thursday, April 30, 2020

New bionic hip next week!

Remember in my last blog I said I was going to the orthopedist the next day?

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.

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.

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.

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.

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 at all. 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.

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.

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).

This will be my fourth hip surgery. Fourth, yup. Two on my left hip for the PVNS 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.

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.

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.

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.

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.

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.

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.

(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 Tikun- 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.)

Sarah Rachel bat Tova

Sunday, April 26, 2020

The Corona chronicles

Long time no see!

I haven't written since February, and here it is almost May. I have thought about writing many times, but for many reasons I just felt I didn't have anything to say.

I re-read my last entry. I was talking about all the things I am up to, and how I'm not finding satisfaction in them. Well, they all got taken away during this Corona crisis shut-down, and all new levels of how to spend my days are presenting themselves. It's been a problem to invent structure to these unstructured days.

I had started the bituach Le'umi career assessment, but it got cancelled in the middle because of the shut-downs from Corona Virus. Things are slowly re-opening at this point, so I'll await a phone call from them regarding when we will continue/finish the evaluation.

I think the place where I have been doing the jewelry making is going to re-open soon, so that'll be nice to get back to.

In the meantime, days have been slow over here. I've been sleeping late, and resting a lot. I tried doing a walk every day, but my right hip hurts so much that I have to rest so much after a walk, and sometimes take a Percocet for the pain. Not worth it. Tomorrow morning I'm going to the orthopedist to see what he says about a hip replacement. Last time I saw him I was thinking the left hip needs replacement, but I started taking that supplement called Cetyl Pure and it helped, so I pushed that off. I am still taking the supplement, but it isn't helping my right hip now. The left one hurts much less, but the right one is causing me trouble. I'll know more tomorrow.

I am still practicing horn almost every day, going through exercise books which I went through in College & grad school. They are challenging me all over again. I'm still finding it hard to feel inspired to practice when there is nothing to practice *for*. I need an immediate goal that I can practice for. I wish there was an opening in an orchestra nearby.

We're all trying hard not to get the Corona virus. We wear masks outside, but I gotta say I haven't been so good at that. I find it so hard to breathe if it covers my nose and mouth, I often don't wear it unless I know I am going to be in close-ish contact with other people (like at the grocery store). We mostly stay indoors, though, that is the best way not to catch it. Robert is the one who usually goes to the grocery stores, and he wears a mask there. What strange, apocalypse-like times we're living in. My two younger kids are distance learning in the mornings, and occupying themselves in the afternoons/evenings with computer games, communicating with friends, playing guitar, Shifra is painting a lot, she paints beautifully. Ya'akov kind of has his days and nights turned around, gets up around 4 or 5 in the afternoon and stays up late into the night. I hear that about other late-teens early 20-ers also. He needs a lot of support and understanding for wading through these strange times when everyone is home all the time. I think he's trying to avoid too much family together time. Everyone handles it in their own way.

I have been feeling so lost, honestly. And my motivation to change it is very low. Lathargic, I'd say. I will hopefully look at life after things re-open (jewelry making, the gym/pool) more positively when it happens. I certainly will appreciate having a schedule and order to the day after this odd time period!

Today is the anniversary.... of the original hernia surgery which lead to the NF. Truth is, I learned from the lawsuit that there may not have even been a hernia. The pre-op time period didn't have any testing which would tell us if there was a hernia or not. No ultrasound, CT, nothing. The surgeon did a hernia repair anyway, but according to the post-operative notes, it wasn't so clear that there was a hernia. It's so messed up when I think about all the mistakes that were made which turned my life upside down, and now I don't know if I can ever get back to feeling good. Last summer in New York I had the reconstruction surgery, and I am out of belly pain now. Only my hip remains as a trouble source these days. It is pretty miraculous when you think about all the illnesses and pain I've been through over 12 years....and now it's boiled down to only one problem spot, not having to do directly with the NF. (But it could be an indirect effect because of all the years of limping, favoring my left leg, the right one took a beating. When I had the right hip surgery about 5 or 6 years ago, the orthopedist told me that there was no cartilage at all in the joint, and he did a fix that should buy me about five years before I'd need a hip replacement.)

Actually, I do still have one small but sharp belly pain when I play horn sometimes- not all the time though. I think that is probably not going away, it's been almost a year since the surgery (9 months). I can still hope it'll go away, I just have a feeling I'm stuck with it. Robert's theory is that it is the part of the mesh that the surgeon left in which is causing me the pain. Could be. (the surgeon last summer said that he took out 60% of the mesh, the other part was too integrated with the tissue to remove it successfully.) It might just need more time to form more scar tissue inside in order for it to stop hurting?

So this is the time period, coinciding with the time period in the Jewish calendar of Sefirat HaOmer- the counting of the "Omer", 50 days between Passover and the next holiday of Shavu'ot, the time period when I had the hernia surgery and then septic shock and NF four days later, in 2007. It is an intense time period for me, and my body and soul remember. I no longer hold anger for the surgeon who messed up, but he's not high on my list of people I want to have contact with. I am a survivor. My whole life was changed in this one day 13 years ago. You never know what is around the corner, especially when it comes to medical things. I thank G-d for my health, and grieve what I lost to NF and everything that followed it. And now that I have 9 months of a "new normal", I find myself grieving even more because I am free to feel my feelings, I'm not "busy" with being sick anymore. And I feel lost. I don't know what the future holds, but I pray that it includes me and my family staying healthy, and finding meaning for myself and my family in this strange Corona-stricken world.

Sunday, February 23, 2020

The soul's time to heal

Well, the dust has settled after the wedding. The young couple is settling in to their new apartment in Bet She'an, and Dov is back in the army during the week. They have Shabbats together, sometimes by themselves, sometimes by her family, and sometimes here with us.

I still have some lumps and swollen places from my fall down the stairs, those are going to take time. I got really lucky with that- it was 11 hard marble stairs, and I went tumbling down all of them, couldn't catch myself. I'm totally OK, thank Gd.

Life these days remains confusing.
One large surgery healed my body... what can heal my soul now? Things are so different than they were before I got sick. I know that is the understatement of the century (for those of you who knew me before I got sick, you know what I mean).

I am playing horn, practicing almost every day, and playing in the Gadera orchestra once a week.
I am also swimming at the pool a few times a week. Problem is that I am not enjoying these things (and I keep getting swimmer's ear). I do them because I have a make-believe checklist in my head of things I have to get done. Also making dinner for the kids; I used to enjoy that. It seems like the enjoyment is out of these things I do. I keep doing them, but it is hard to motivate myself when I don't really get enjoyment out of them. This is part of depression.

I am doing the jewelry making four times a week, mornings until 12:30. I like that, it gets me out of bed and doing something. I need a reason to get out of bed or else I don't get out of bed. (truly- it's not good). I've made three rings so far and am in the middle of making a small round silver box (these things are not for selling, I am still learning. Soon I will make things to sell there). I like the skills I'm learning. Especially soldering.

My health is good. Baruch Hashem. I have a few things to tend to, but nothing too serious. I've never been in this position- that my health is good, and I'm not working at my careers. I'd have to practice a lot more if the orchestra I used to play with is going to hire me as an extra sometimes. They haven't told me that, I just know. And as far as birthing work, I have no motivation. Like I said, nothing in life feels motivating. I have a child who also has nothing going on all day, and I see us as mirrors for each other. He went downhill when I did a few years ago when my abdominal pain got really bad. Now he is stuck in quite a terrible rut, and I don't know how to get him out of it. He just turned 20, but....it's complicated. I don't want to talk about him too much in the blog. It's not fair to him. But it is a source of *a lot* of heartache for me.

I am still getting used to life healthy. It was twelve years of health troubles, then one big surgery last summer, and now about seven months of being healthy. I still get twinges of pain in my abdomen, especially when I play horn, but it's nothing like what it used to be. And my hips still hurt me from time to time, but I'm taking this stuff for them is really helping. It's a supplement called CetylPure, for joint health. It is really working, my hips hurt less when I take this stuff twice a day. It works on the collagen in the joints. I highly recommend this stuff for anyone with hurting joints, especially from surgeries and arthritis. I am postponing my hip replacement because of it. This supplement is buying me time.

In a few weeks I start the two week evaluation from Bituach Leumi (National health care). I have no idea what to expect. I'll miss two weeks of the jewelry making. It is supposed to be an evaluation to see what career options are best suited to me. Should be interesting learning the results. What are they going to do for two weeks? Must be some thorough evaluation.

To sum it all up, I am still suffering from depression, and complex-PTSD, and I don't know where to turn anymore. I have a decent therapist, and I take my medication. I sleep most nights with the help from the Cannabis. I'd hate to think this is my lot for the rest of my life. I think I need to be busier doing productive things. Isn't that what every human needs, to feel they are a contributing member of society and not just a body taking up space? I feel awful. I gotta stop writing, it's making it worse. I think that is why I am not writing my blog much anymore, it no longer helps me to feel better. This stuff is too deep to write about and feel better afterward. Some things don't have "feel better" solutions. Taking care of my soul (and my children's) is much harder than focusing on my body's [medical] problems that I used to have.