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.

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.

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.

Too much pain- Next step MRI

 It's getting worse.

The pain is getting worse.

I am getting desperate.

I don't write this lightly.

Every step I take hurts. I have started taking pain meds so I can manage life, but I can't sustain that for a long time. I get rebound headaches from extended usage of pain medicine.

I can still go to the gym and get some of my workout and physical therapy done, but many many things hurt a tremendous amount. I am going to cut out going to physical therapy with the man, and keep going, for the time being, to PT woman. What she does is better for me than what he does.

I went to my 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.

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.

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.

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.

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.

I wake up every day depressed after a not-great-night of sleeping because of pain.

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.

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.

Post-op one month

Hip 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.

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.

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.

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.
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.

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.

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.

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

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.

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.

Steroid shots; I'm going for temporary

Looks like steroids are a way of life for some... and I'm among those in the ranks. I don't love the notion, but they work. I know it's a temporary fix, but I'm going for less pain in my life. It doesn't address root problems, but I can only do what I can do.

Last Thursday I was at Ichilov hospital in Tel Aviv to see my orthopedic oncologist about my left hip pain. I was going through my checklist of what the pain could be from, and after ruling out osteomyelitis, PVNS was next. I had that 10 years ago, and underwent a few surgeries in the hip because of it. It has a 50% recurrence rate, so I had to go check that out.

The orthopedic oncologist said he'd take a look at my MRI's that I have to do in the next few months from various other doctors, but he was almost 100% sure that what I am suffering from is bursitis of the hip. He offered to do steroid shots into my hip right then and there, and after thinking about it a little bit, and discussing it with him, I went for it. Even though steroids can lower immunity, and even though I have an open, active infection going on right nearby where those shots were going, the infection being in my skin graft. The orthopedist wasn't concerned about that infection... that concerned me. But I went for it anyway. We will go to great lengths to be out of pain. At least, that's where I've come.

The shots hurt like hell. In the Mayo clinic they were administered into my stomach wall muscle after a local anesthetic was given first. Here, it was straight into that hip joint with the needles. Two places. The rest of the day I was in intense pain, could barely walk. I slept with a heating pad on my leg, and it was a bit better the next day. Shabbat was a little better yet, and today (Sunday), I actually got myself to the gym to get working again. It hurts, but I do think the steroids are helping already actually. The injection points look pretty clean, I think I'm OK. There is one guy on my NF support list who got NF through a steroid injection into his hip. But you can't live in fear.

Interesting outcome is with the open wound on my graft- it seems to have reacted positively to the steroids, and overnight it formed a decent, tough scab. Usually it scabs, but after a shower, the scab comes off and it oozes again. I have been cleaning it like four times a day from gook. But after the steroid shots into my hip, it dried up and formed a durable scab. How interesting, right? It's been dry for three days now... life is full of surprises! I know that the staph infection in that area isn't gone, steroids don't kill infection, but not having an open wound is a good thing.

The first night after the steroid shots I didn't sleep *all night*. I didn't have that effect after the stomach steroid shots at Mayo. I was just wired awake, no matter what I tried. I've been making up for that missed night since then, headachey and tired a lot. But like I said, I got back to the gym today, did 5 km on the bike at a decent resistance, and a lot of weight training and stretches. It's hard work.

I am in pain in my hip now, but it's tolerable. I'll turn on the heating pad again when I go to sleep.

In the meantime, I saw good friends on Shabbat, and celebrated Dov's 20th birthday (!!) with a home-made cake. First home-made birthday cake I made in a long time, baruch Hashem. It was a gluten-free carrot cake, and it came out great! We had a little family party for him last night.

I hope I'm entering a new phase in ability... if the steroid shots keep warding off the pain, who knows what I am capable of! But it's gonna take time. I'm tired... a lot. But not giving up. Not giving up.

Missing my father on his would-have-been 88th birthday. I had a good cry Friday night, not even realizing it was his birthday. My soul knew, though. I just want to pick up the phone and talk to him, joke around like we always used to, tell him he's the best and wish him a happy birthday. In a few weeks, we will have closed an entire year after his passing. Hard to believe. I miss him terribly. There was never a gentler soul in the world.

I'm not ready to stop grieving him, as per tradition after the year is over. Well, not really "stop grieving him", but go back to resuming all the "normal" things one does when they are not in the year of mourning. Going to live music concerts (I miss those), buying new garments, going to public parties. For me, it's been over two years that I have been basically out of the swing of doing these things. My mom died, then after her year of mourning was finished, four months later my father died. It's been pretty intense. I'll get back into activities as I feel I can. I just keep making paths around the big hole that is in front of me all the time, and I go on. Sometimes I fall into that hole... the hole of losing both my parents in what feels like one-fell-swoop. Hard to incorporate.

Happy 88th in Gan Eden, Dad. I love you and miss you.

I can't do this too much longer

You know, I can handle a lot of stuff. I mean, a lot. You guys read my blog, you know what I am capable of. But piling on a lot of pain, I can't do that too long. I'm out of the game.

I'm in too much pain. This belly problem has not yet been solved. Things have been found, but no decisions have been made. Yes, there is a gall stone, that could be the cause. There is some gynecological stuff going on, but I really don't think that is what is causing all this pain. I see that as "the devil we know"... endometriosis, fibroids, cysts.... it couldn't cause this kind of pain, or loss of appetite. I've known the endometriosis pain for years, I know what it feels like. I know what the cysts feel like. The fibroid is new, but I don't think that is the cause of this pain, I just don't think that's it.

I saw a gastro doctor last week before Rosh Hashana and he wrote a list of a whole bunch of other tests to get done. I'll get to those this week. Most of them tomorrow- blood test, poo, and an upper abdominal ultrasound, also tomorrow. I hope (in a weird way) that we get some answers from that. I can't go on like this with no answers. I'm really functioning at a low level. I'm treading water so long that I completely forgot that I actually love swimming. Soon I'm going to forget how to.

I can get up and get around. But with pain. I got to shul (synagogue) on Rosh Hashana, once, for a few hours, but barely could pray. Too much pain. My prayer book barely got used this holiday. I did make it to our friend's house, and we also did have friends over, and I was around, but not really. One meal we hosted good friends and I had a migraine on top of the belly pain so I wasn't there at all. I missed sharing our traditional Rosh Hashana meal with them. It made me so sad.

Speaking of migraines, lately it seems that my headaches are winning the tug-of-war with the Topomax.... I don't know if that means we'll have to raise to dose or what. Every day now for four or five days I've had some sort of a strong headache. Twice I could call it a migraine, but not Large Scale. For a while there the Topomax was totally winning the tug-of-war. I can't help but wonder if whatever is going on in my belly is connected to headaches as well.....

It's really true what they say that if you don't have your health, not much else matters.

I mean, of course life matters. My family, it all matters intensely. But living in pain 24/7-- THIS level of pain, I didn't sign up for this. I'm used to low level pain, in my hips, my knee, on my skin graft, pain from the mesh- localized, deal with-able. I can't do this too much longer. I don't seem to have much choice, though, do I. I haven't even started the game of trying to see which pills may or may not take it away, because that is a slope that I have lots of experience with.... that could also land me in the hospital with rebound headaches, and my body getting too used to analgesics. Been there, done that. I am just waiting out these waves- tidal waves - often just steady gushes of pain in my belly. Today is the first day that lying down is not fully taking the pain away. NOT GOOD.

It's very lonely.

We just have to keep doing tests and hope we find an answer. And pray that the solution to FIX it is relatively simple.

But knowing me....not much on my journey to health has been clear or simple in the least.

I'm kind of losing my cool about this, though. It's too much pain, for too long.

An update from hibernation

The wind and rain has been so cold, and the sun rarely warming anything during the day. I have been taking the opportunity to hibernate. I am so cold, always. I wear three layers to everyone else's one or two. I put the heater on, but it takes too long to warm the rooms. I've always been more of a summer/heat/beach person.

I'm stying right in here, thank you very much.

But you didn't come here to read about the weather in Be'er Sheva. I just don't know how to start writing. I'm going for calmness, equilibrium, and quiet spaces. Things have been possible lately. I say it that way because during the time period that Sabrina was getting sicker and passing away, things were impossible on every level. I stepped away from everything after she died... well, after my father (who had pneumonia) left after she died.... well, after Ya'akov's hernia surgery after she died.... you get my drift. No more drama. I almost couldn't bear to see the hospital any more. My soul needs calming. It's been through so, so much. So I think I am able to give it calming now. I am able to step away from, or avoid loudness, or take it in small quantities if I am up to it. Like shopping with my 14 year old girl. The stores today's girls want to go into... makes me crazy with the loud music and perfumed air. She knows I have a half-hour limit there. I'm so old. :)

I am sorry to report that I am in pain all the time... again.

That hip surgery I had October 2015? It's effects are gone. Osteo-arthritis in full bloom. Very painful, practically every step. I have been following a low-inflammation diet, taking cartilage supplements, and... it's back anyway. At the time my orthopedist said he didn't know how much time be "bought" me before needing a hip replacement, but now we know.

Thing is... hip replacement surgery? Now?

Next month I finally have my appointment with the throat/swallow guru of the country to finally [hopefully] correct my dislocated cartilage in my throat from that last surgery. I have waited six months to see this guy, my throat clicking away with each and every swallow.

Now I need to do another surgery, and intubation, and all the pain of recovery and physical therapy and no driving and and and and and??? (actually driving is already getting hard for me... I feel it creeping into my life- cutting out quality of life things because of pain. I've been here before too many times.)

I can wait, it's not an emergency, of course. The arthritis gets worse, but not that quickly. But I know I will not go on pain meds, so I don't have much to rely on as this is worsening. I just am doing less. Even playing ping-pong with Azriel kills my hip, and that's really not so strenuous. But he's so cute and loves it so much, I hate {{again}} having to say no to him because of my physical or emotional shortcomings at any given time. The kid barely ever knew me not sick.... or I should say, as strong as I was before I got sick in 2007.

Shabbat is approaching. I'm glad I got to write a bit... thanks for hanging in there with me.

Love from cold and rainy (and hail-y!!) Be'er Sheva.

Withdrawal: MOH (medication-overuse headache)

I was sure I could handle the withdrawal without assistance. I did it with the Fentanyl, how much harder could this be?

Yah, well, it is harder. It's "cold turkey" instead of slowly tapering. That makes a big difference.

Just spent three days in the hospital neurology unit dealing with my horrendous withdrawal headaches.

The second day of no meds was on Shabbat (this past Saturday).
By Saturday night, my pain level was way past 10. It had gotten to 10 at about 4PM that day.
My neurologist said that the hospital could give me an IV "cocktail" to help the withdrawal and the pain if I needed it.

We went into the hospital at 8:30pm.

In the ER, they didn't know what to do for me; I was supposed to be going off over-the-counter medicines, and I was there in terrible pain, they didn't know what they could give me to help. They actually took initiative to call my neurologist at his home, at 10:45 at night.  Dr. Ezra (my neurologist) answered. That is also not to be taken for granted. He told them about me, and what to give me.

I got the "cocktail" IV only at about 11:30. I was in so much pain all I could do was lie in the hospital bed in fetal position and groan. I could barely see straight- my eyes were very effected with this withdrawal. It was hell.

So I was hospitalized at the advice from my neurologist. I couldn't do it alone, afterall.
Sometimes Hashem reminds us that there are things we just cannot do alone. We were not put in this world in a vaccuum; that, part of Tikun Olam (repairing the world) is realizing that people are here to connect and help other people. Ultimately this leads us to strengthen our connection with Gd.

At the hospital they gave me some steroids for the pain and a muscle relaxer medicine. It helped ease the pain a bit, but not a tremendous amount. For the most part I had to just slog through it, praying for Hashem to release me from the pain in my head.

My neurologist is really a gem. I have said it before, and it is only more and more true each time I see him. The morning after my intake, he came to my bed to visit and see how things are going. I said its been hard, but I'm plowing through. He asked me if I am doing any relaxation techniques, the kind I learned from his course on meditation for chronic pain sufferers. I told him I wasn't. At that moment, during busy morning rounds, he invited me to come into his office to do a relaxation session. Right then and there. I got comfortable in his big lounge chair with the leg rest and reclining back. He took my phone and recorded a whole meditation for pain session (in his voice). It took about 15 minutes. He asked me if I have less pain, and I said I didn't, but I am definitely more relaxed. He said to listen to it on "loop" (repeating over and over) to try to help overcome the pain.

Then he carried on with his rounds. Amazing.

He also had a special "protection" assigned to me... the nurses never woke me up to take blood pressure or temperature. After all, I am not sick, I just needed some back-up for a withdrawal. I never got woken up (by nurses or doctors) the whole time I was there. That, I think, is a miracle in and of itself.

I came home on day 5 of withdrawal. The hard part was over, but the headaches still hung around.

Today, the end of day 7, when Dr. Ezra said withdrawal would be finished with, I still have a dull, consistent hum of a headache. I went out with my family to celebrate Israel's 68th birthday, though, thankfully I was well enough to go to that-- our yearly cook-out with friends from all over the country.

My eyes are really effected by this withdrawal. The first two days I had a white light behind my eyes, no matter how dark I made them. I was also seeing strange visions, icons sort of, inside my closed eyes, for days. It was so strange. Now I still have some of that white light effect (kind of nerve-wracking, in a way) when my eyes are closed, and they are still over-sensitive to light. I am looking forward to a headache-free days (I have had one, yesterday), and taking off my sunglasses.

selfie from my hospital bed
Ya'akov calls it "gangsta momma"

What is unknown is what to expect about the migraines which triggered this whole cycle to begin with. I am supposed to start charting them, dates, times, rating of pain on a scale of 1-10. My current instructions are that I can take Excedrin/Advil if I feel a headache coming on (after this initial withdrawal period), but not more than once a day. Also, up to twice a week is OK, but not two days in a row. I see my neurologist again in a few weeks to follow-up, and see what comes next in evaluating the migraines. Probably an MRI first. I haven't ever had scans to evaluate the migraines.

This is all so "one-day-at-a-time".

Did I tell you my right hip (recent surgery, 6 months ago) started acting up also? It hurts these days. It had stopped hurting for like 4 months. I thought I was healed, but now I realize that all those analgesics I was taking were also helping cover that pain. Hopefully when I get back to the gym, and start working out slowly, it will be better. I hope.

As they say in Israel, "פרה פרה" (para-para, literally "cow-cow", like, we'll milk one cow at a time, no matter how many there are. It's a great expression.) Actually Dr. Ezra used an expression taken from Arabic- "שואי שואי" (shway shway) meaning "little-by-little".

I'm getting there.

migraines

For whatever reason, Hashem has decided that I have more work to do regarding pain.
He and I don't share the same opinion on that, though.

While my hip pain, on both sides, is almost completely gone (I never thought the day would come that I could say that), it feel like I just switched one pain for another.

My migraines have gotten so bad, it's almost too much to bear. I sat in a darkened room yesterday evening, crying, my head feeling like it is splitting open. That was day two of the migraine, including all night. And again, all night last night. The only thing that can help me sleep when it hurts this bad is Percocet. It doesn't really do much for the pain (Percocet is a narcotic, which don't work for migraines), but it does take a bit of the edge off, and helps me to be able to settle into sleep. You can imagine I must be *very* desperate, for me to put any narcotic into my body. I also listen to soothing music in earphones when I am trying to sleep with pain.

My migraine medicine (Zomig) does not work *at all* anymore. I can take a pill, not feel an effect, take another an hour later, and still no relief. Completely useless. It *used* to work. My migraines have become immune to it.

They have been getting worse over the past few months. I don't (yet) know why. Yesterday I went to my optometrist to see if my new glasses prescription I got about six weeks ago is a problem. He tested my eyes again. He did find one possible thing that may need to be corrected, but I am supposed to use eye drops three times a day for a week then tell him if that helped. I may need to have my glasses revised, but I am not convinced that the intense migraines are from that.

Today is day three of the headache (except for Saturday daytime, when I didn't have it at all, thankfully- I got to really enjoy our guests! But the Saturday night migraine was *horrific*). Today I called my Tai Chi instructor who also does acupuncture and Shiatsu, and asked if he has experience with migraines. He said yes, and came today to do a treatment. It was interesting, but of course, not magic- you have to do a series of treatments to see results. I'll do another on Wednesday.

I have been trying to reach my neurologist, but he is so hard to reach. I am going to try to catch him in his office like I have done in the past, but I'm no longer sure of his office hours, and his clinic says he's not in until next Wednesday, and it's booked solid, for months. I have an appointment in June, but my problem is Now. He'll probably just prescribe another migraine medicine (a few of which I am already allergic to). I think it is all stemming from the sleeping problems and sleeping pills, but at this point, I have so many migraines, that I am not sure. I'm interested to see if he has a suggestion to help getting off sleeping pills, but probably not a suggestion I want to try (like substituting it for another medicine).

Yesterday after the optometrist, with a raging migraine, I drove a half hour to see the doctor I have been seeing regarding vitamins and supplements... Dr. Litman. We will "tweak" some of my vitamin etc regimen, see if that helps. There is something I've been taking (amino acids) that may be effecting my nervous system in the brain, so I'm going to cut that out. It's all a long process to get healthy.

As someone who has had the flesh eating bacteria understands intimately- it takes one tiny bacteria to take a whole life down in a matter of hours... it takes many many years to build it back up.
Once the body loses it's inner balance of health, it seems as if it will never be the same.
Now it's the migraines and needing to address the sleeping pill problem. It seems just too hard.

Will I ever be "me"?

The surgery is over.

The lawsuit is over.

I'm exhausted. There are times I'm not, but pretty infrequent. Today (Friday, a notoriously busy day) it was all I could do to get out of bed to eat and drink. I am back in bed now, and Robert went out to buy stuff for Shabbat because I won't be baking or cooking today. He cooks the meats, and side dishes as well. I usually do a few side dishes and all the baking (challah, deserts). "Usually" means since after NF, of course. The usual before that was entirely different.

I've been trying to work hard on physical therapy myself. I want to badly to be stronger. I think I may have hurt myself, though, so I gotta take it easy. The leg muscles are so weak that my knee buckled (while I was doing pt on the stairs) and now hurts when I go up or down stairs. I just have to rest it. I am back to doing Tai Chi also, which is so good for me in so many ways, but it is really hard on the thigh joints. It seems, from my perspective, that it is mostly thigh joint. Lots of slightly bending knee, and leaning all your weight on one foot. Strenuous, but oddly balancing. My teacher tells me ways to make it less strenuous, and I do that when I remember.

My thoughts recently are ambiguous. I wonder if I can ever get back to playing horn, or doing birth training, or writing my book. I am just. So. Tired. I want all of those things, though. I want to feel productive again after all these years. I just can't pick myself up to start anything, though.

Shifra helped me clear out my practice room. It's our bomb shelter, but I painted it (a while ago, not now) and used it as my doula room where I'd meet couples for classes. It's really a lovely room. I also practice horn in there when I needed to. I practiced in my room, too, though. In the mean time, I said to everyone that it is no longer a dumping ground, it is to be a sacred space that gets respected and kept clean. I have intentions to start doing birth classes, and start to play horn again, and continue my book. But so far I am just too tired. I am just trying to keep up with the needs of my kids and my house (and myself... physical therapy, hydrotherapy, etc). I guess that's really all I can do for now.

I guess the question is, when does recovery end and I get my activities back?

I could have had horn playing work next week- my partner from the orchestra called and asked me if I am ready to play. Had to turn it down. I'd need at least a month to be at a decent preforming level.

I want to set a goal, like at the six month mark after surgery (April), but I am afraid to let myself down. It's happened a lot. Yes, I have been through a lot. But it is still hard not to feel I am letting myself down when I can't do what I want, and love, and am good at, and can make a difference doing.

I still have pain, but less than I had before the surgery, thank Gd. But still have pain. In both hips. And nerve pain acting up recently. And a bad rash on my skin grafts because of the winter dryness (I am trying to take care of it). And the clicking thing in my throat when I swallow, some sort of scar tissue or something since my last surgery (from the breathing tube. I haven't checked it out with my doc yet). And lots of headaches because I am often so tired. And an occasional inflammation and low-grade fever, on schedule with my monthly cycle.

I don't mean for that to be complaints, just like a inventory of sorts.

I guess we can all see why I am not doing the things I love.

I am sad about that. I am really good at what I do. I just can't do it.

Yet?

(ps- please don't tell me that this is my "new normal"... I don't want to settle for that.)