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.

Confusion leading to clarity. That's why writing helps.

Remember back in April when I re-opened this blog because of pain? It had been around for over a half year at that point. It's now almost a year since the pain started. We are making some progress as to the nature of the pain and what can be done about it.

First the news on the progress of getting an MRI for my NY doctor. I went to the plastic surgeon here in Soroka last week, and I had to really be my own lawyer. He wasn't convinced that I needed an MRI and at first didn't want to recommend one. He wanted me to go to the pain clinic for pain control. I ***hate*** that answer. I am no longer a candidate for pain pills or narcotic patches or any pills or elixirs. I told him that. I told him of my long-standing experience with pain medication, and that in the end of it all I get rebound headaches for months from them. Even over-the-counter ones. The last time I was on strong pain medications (my right hip replacement surgery 2 years ago) it took weeks of weaning to get off them, with debilitating headaches every day. I told him that I am not a candidate for the pain clinic. I even got sensitive to Cannabis, which everyone says is totally natural and nobody reacts to it. So I was successful in shutting that idea down, thank Gd. 

I had to explain to him why my NY doctor wants an MRI now, to evaluate this pain (looking for possible nerve entrapment amongst other things). I really had to advocate for myself, this doctor wasn't really with me at first. But after a while, he said yes, he actually does see reason to do an MRI now. So in the end, he did write a referral for me to have the MRI's.

Then I had to submit that recommendation to my HMO, and I am now awaiting the answer from them. Their job is just to give me the payment form necessary to do these MRI's. The HMO ("Clalit" in Hebrew) told me weeks ago (months ago?) that I needed a referral from an Israeli plastic surgeon in order to get their payment form for the MRI's. Now I have that, and am awaiting the confirmation and payment form. So much red tape. The first MRI is scheduled for August 8th.

MEANWHILE....

Today I was at the orthopedic oncologist at Ichilov hospital, where I have been a patient since my left hip had the PVNS (in 2008, a year after NF). It's funny to have two different doctors for two different hips.

I showed them the CT that I had done at the beginning of July. They think all my pain, after explaining where the pain is, is from the fact that my hip is in an advanced state of osteo arthritis. They showed me where I am walking bone-on-bone in my joint. They think that all my pain with walking is due to that. Even when I explained that the pain is over my hip joint as well, near the scarred areas from NF, they said that that is a classic spot to have pain in a hip that is beyond it's time. I also have bursitis, by the way, but that alone isn't a reason to do a hip replacement. My orthopedic oncologist brought into my exam room two other doctors- one who is the head of their joint replacement department, and another guy who is his fellow. "Brilliant doctors" he said to me. OK, so they examined my hip as well, and the CT films, and came to the conclusion that I need a left hip replacement. That all my pain is from the hip. They went on to tell me that because of the surgeries and extensive scarring around the front of my hip, they would do an anterior approach to the hip replacement surgery. This is less ideal than what I had for my right hip replacement, which was a lateral (side) approach. With the anterior approach the recovery time is longer and harder. The doctor who replaced my right hip only does it with the lateral approach, so he wouldn't be able to do the anterior approach for the left one. The doctors who I saw today do both approaches, and are the ones who recommended it.

Now I'm in a quandary. Do the MRI's (assuming the HMO will cover them...), send them to my NY doctor and wait to see how that turns out, maybe fly to NY to get a plastic surgery there to possibly help the possible nerve entrapment syndrome, or skip the MRI's altogether and go for the hip replacement, where it'll take up to six months before I'll really know if the pain I've been having with walking for the past almost year is really gone? Or, do the MRI's, send it to my NY doctor, and see what he says and weigh my options.... I think that last one is the answer. This is all very confusing, but I think I've worked out what to do. Assuming that the HMO will now pay for the MRI's, I'll do them, and see what comes of that. If my NY doctor doesn't find a problem, then I'll do the hip replacement.

Either way it looks like I'm headed to a surgery. I knew it that when this pain started, I knew in the back of my head that it might lead to another surgery. It's my track record. I hoped that the physical therapy that I have been diligently doing (as recommended by today's doctor, 4 months ago) would solve the problem. Now, in physical therapy, we are working on my years-old knee problem, stemming from the same problem from the NF.

What would my life have been like if I never had NF? I just try not to "go there". No point. 

I know that there is a lot of good that has happened since that horrific disease in 2007, and I prefer to focus on that. I am much more than merely my body.

Hi. I'm back.

"...I felt that the trip [blog] had ended itself; had reached some psychological conclusion, had simply become complete, like the last page of a novel." (from the book "Tracks" by Robyn Davidson)

I stopped writing because life was much more simple after I healed from my big New York surgery. I was working at the gold/silver smithing job, and I wasn't in pain. I wasn't in pain after that very successful surgery. It was quite literally a miracle in my eyes. I didn't need the blog anymore to get out the hard stuff that plagued me for so many years after I had NF. Life had become better by a lot.

Fast forward to about six months ago.... yes, we are skipping lots of time in the life of Sarah and family, but that's OK. You understand. Life went on pretty smoothly. My kids are doing great, all of them, my grand daughter is now a year and a half old, my husband Robert is in a good space, and we are truly blessed.

But pain has re-entered my life sphere. My body, to be exact.

It's about three years since my life-changing surgery, and pain has slowly been creeping back into my life. It's been downright depressing and difficult again. I can still do my work-out at the gym (where I try to go three times a week), but some things are more painful.

I had thought my left hip was going, as my right one had done two years ago when I had it replaced. But it's not joint pain. It's nerve pain, or scar pain right at the top of the hip bone, where the painful part of the skin graft always was. I went to my orthopedic-oncologist about a month ago, and he diagnosed me with bursitis and advanced arthritis. He prescribed three months of rigorous physical therapy, then to come back to him to re-evaluate the situation. So I am now in physical therapy with two different physical therapists, both young, both had not heard of Necrotizing Fasciitis or PVNS. They both have different ideas of what might be wrong. But I'll do what both of them say as long as it doesn't contradict one another.

But I don't think physical therapy will solve this problem. I think a few things:

1. that I have adhesions from the big abdominal surgery which went to the hip

2. that the remainder of the mesh is what is causing part of the the pain again

3. that the hip bone pain might be referred pain from my belly where lots of things were moved around and cut and sewn up again.

I am going to ask my GP for a CT scan of the area and send it to my surgeon in New York. I might even go see him this summer if we decide that is what is needed. I think he is going to want an MRI, and I'll have to jump through hoops here, again, to use a referral from him to get an MRI here in Israel.

That's the plan... physical therapy for the time being, and diagnostic testing.

I feel like I've been around this block too many times. It's downright depressing. So far I've managed to keep my spirits up because a lot of good is happening in our lives, but pain really puts a damper on life.

Once again NF is the gift that keeps on giving. I think it will never come to a real end, that pain is always right around the corner, if not this year then next, or the next. I write to people on my NF support group, when they talk about their issues and pain, that I'm not going to lie, pain and troubles follow us after we've had this disease. But I always write to them with an upbeat tone, that it gets better as time goes on. I'm one of the people who have been the longest- term survivors, so I often try to write words of wisdom. Sometimes all I can do is commiserate, and that has it's therapeutic place, too.

I have totally given up horn playing. Forever? Who knows. There are many reasons for it. I'm just too much of a perfectionist when I pick up my horn, its not emotionally feasible. I still fanaticize about my 13 years in the orchestra.

I am trying to restart my doula practice. It's going slowly, but that's OK, because...pain.

I am still doing the silver/gold smithing job, and I usually really like it. It gives me a good framework to get up every morning and go to work.

So, life is complicated again, and I feel depressed about the pain, but lots of things are really good. 

Lots of things. 

Baruch Hashem.

Hip replacement

As we know, my belly pain problems, although prominent over these past few years, are not the only issues in this war-torn body. My hips are another source of problems.

In this case, we are talking about the left hip, the one that had the PVNS in the joint the same year I had NF. I think I am the only person in the history of the world who had NF and then the rare and destructive tumor disease in the same year. The orthopedist said they are not related. I don't know about that. The PVNS was not part of the lawsuit, that much we know, so the doctors from our lawyer must have also thought it was unrelated.

Be that as it may, that joint where the disease was is not doing well. I am looking at a total hip replacement, sooner rather than later. (But not before the wedding in January!)

I just saw my orthopedic oncologist on Sunday. He looked at my x-rays, and told me the joint is very badly damaged, and that is what is causing me the pain. Last time I saw him he gave me a steroid shot that helped for months with the pain. This time he said it's a different story, it's not the bursitis, it's the joint worn down. There is no cartilage in that joint, I'm walking basically bone-on-bone. Yes, that would hurt, and it does. He ordered an MRI to see if the tumor disease (PVNS) is back in the joint- it has a 50% recurrence rate. He said, either way, even if the disease is back, he'd recommend a THR (total hip replacement). I can no longer go with arthroscopically removing the tumors because the joint wouldn't heal well.

How do I feel about all this?
Terrible.
I don't want more surgery, like ever. I have been through enough to cover my entire community ever needing surgeries. I hate surgery, and recovery. But I also hate being in pain, don't we all. I feel it's not fair, I've been through so much. Maybe I'm feeling a bit sorry for myself, but it's just too much. I just had a massive body and mind-altering surgery only four and a half months ago, I was just beginning to feel free from more surgeries, than this came up. One day a few weeks ago I did Tai Chi (which I do frequently), then with my hip already hurting I took Shifra shopping in the mall, and that was it- I was in so much pain I could barely walk. I started sleeping with a heating pad on my whole hip, but it didn't really help. Nothing helped, and I won't take pain pills, or patches, or anything like that. But maybe I should just take something to get through the wedding, I don't know. It's all so confusing for me, all my feelings about medicating pain, surgeries, pain in general. I have had such a long history with pain of all kinds, from mild to the most horrendous pain I could ever imagine (when I had NF). I am DONE with it. I just want to live my life with no surgeries looming over me. I have been thinking about my future for the first time in a long time, and now I feel like that needs to again go on hold. What is the message here? Why do I have these things come up all the time? What am I doing wrong? I am just beside myself with dismay at needing another [serious] surgery.

Everyone has stories about their parent or relative or friend who has had a hip replacement and it was the best thing that ever happened to them. I have heard many stories. My father had a hip replacement when he was about 80, but his was not done correctly and he continued to walk with a limp for the rest of his life. He had scoliosis, and because of the curvature of his spine, they made the hip the wrong size. Instead of going in for a revision, he left it that way. He wore one shoe built up higher than the other, but it didn't work to stop his limp. I know that I won't have that particular complication, I don't have scoliosis thank G-d. But there can be other complications, we don't have to name them all. I've already been through one of the worst that can happen (NF), and that can happen again. There is no immunity against that once you've had it. But a million other complications can also happen.

I've already been through three hip surgeries- two on the left (the one which hurts now), and one on the right. I know what it is like to recover from them.

And even if the complications don't happen (I didn't have any complications with this passed surgery, although it was huge), I don't want more surgery! I feel depressed about it, but with my hip in pain, there is not much choice. I wish I could see the divine roster that G-d holds about what is in store for each person. I just don't understand why I keep having all these trials. I can't seem to move on from this medicalized life. I can't do nursing school in this condition, although I haven't been so sure about nursing school anyway. I haven't been sure about anything these days.

I did two trial days at the jewelry making place, and I am interested in continuing. Since it is through the rehab "umbrella" in the national health insurance, I have to wait three weeks to a month before the approval (and insurance) to do this job. That is a bummer, just to sit at home and wait, but that is how it works there. That is a job with much less responsibility than going back to university to learn. I can take as many days off as I need, and it is only four days a week in the mornings until 12:30. That is a job I can do while I need another surgery, it's also mostly sitting. I'll start there as soon as the approval comes in.

So I'll keep you posted about what is going on with my hip replacement saga. For me it's as much emotional as physical. I just can't believe that I am looking down the barrel of another surgery. Even though I know it will ultimately be for the good (no more painful hip), I wish there was no pain or other surgeries to worry about at all. I enjoyed that while it lasted.

I hope I don't sound too complain-y. I don't want to complain. I am just a bit forlorn at this prospect, on the heels of what I just went through not even five months ago.

Everything at the right time, I always say. I guess I have to be consistent, and maybe this is at the right time. Maybe Hashem wants me to be free of problems after this successful hip surgery takes place. We can hope. We can pray.

Medical inventory and other stuff

As I sit with my laptop I realize I am writing fewer and fewer blogs. Life has gotten to that even keel that I always prayed for when things were crazy. When I was sick all the time and going through hoops to get the health care I needed. There were some very very crazy times in there, we all know. I see other people on my NF support group going through it all now. I'm telling you, this reconstruction surgery I had four months ago was like magic. I feel so much better than I ever felt physically since I had NF. I still get twinges and pain from the surgical areas of muscles, though. It reminds me that I'm healing still. This week I thought I had a UTI (urinary tract infection). The urine test I did at the health clinic showed possible signs of a UTI, so we decided to do antibiotics. It was a one shot antibiotic that is supposed to cover you for three days, specifically tailored for UTIs. But then yesterday we found out that the culture came out negative, so I don't have a UTI. It must be pain from the surgery I guess. I pray I'm not getting more adhesions already; that is partially what caused my two years of pain before the surgery. They do come back after surgery, but I don't know how soon. So we are leaving it alone for now.

My legs are each having their problems... each a different problem. Right leg is suffering terribly from restless leg syndrome. It's always jumping at it's own volition. I can control it if I really concentrate on it, but it doesn't last long. It makes it hard to sit for a long time, including driving. It doesn't interfere with driving, but it is there. The worst part of RLS for me is with the horn playing. I need to concentrate on what I am playing, and the leg is just jumping around. It is very uncomfortable. The worst part is that I can't play with the horn bell on my leg (right leg), I have to play with my horn up, off the leg. That is fine for a while, but I don't like always having to practice that way, it is slightly easier to play with the bell on the leg. But as long as I have this RLS, I can't use the leg for anything. I think the RLS is from a medicine I take, which I recently cut in half, but the cutting in half hasn't made the problem easier. I'd like to cut the medicine out totally, but I have to talk to my doctor about that. I have an appointment in two weeks. In the meantime, my leg jumps. The Cannabis at night helps it to calm down so I can sleep at night, but I can't really take it during the day, it makes me spacey.

The other leg, my left leg which has been through so much, is having big time hip problems. I've had two surgeries on that side, and it's hurting again, like all the time when I walk. I think I need another MRI, but I couldn't get an appointment with my orthopedic oncologist until January! I have to keep calling to see if there is a cancellation, but I'm not likely to do that a lot. It's not an emergency. I pray the PVNS has not returned, that would mean more surgery and a larger problem possibly needing radiation afterward. But I'm going to think positive. I think that the joint is very arthritic and may need to be replaced. I slept with a heating pad on it all night last night and it helped only marginally. Oy.

I am going to be starting to learn jewelry making soon! With soldering and everything. It is a program that I can choose based on my "sal shikum" which is rehab for after my hospitalization last winter/spring in the psych hospital ("The Center for Mental Health"). It's most likely going to be short term, until I start the mechina program which will lead me into another career field. It'll be interesting to learn the jewelry making, and also be a creative outlet for me. I desperately need something to get me out of the house, for the first time in my life I feel bored. Sure there is enough house work to keep me busy every day all day, but I need more. So while I have applied to bituach leumi  (national health insurance) for the mechina program (which is the readiness program for honing learning skills for older people changing careers), it's going to take time before that all goes into effect and I can start. So in the meantime I'll work on jewelry making. Sounds nice, right? I'll even make some money at it, they sell the items we make.

I honestly don't know if I can be a nurse. If I can 1) get through the university level classes in Hebrew, and 2) depend on my body to put in those hours also learning, but also for practical nursing practice. My hip hurts after a shopping trip to the mall with my child, how can I do what nurses do? Unless it was at a health clinic or a private doctor who needs a nurse, that could be easier work. I just have such low self esteem with this all. But my horn playing isn't going to be something I can rely on to play full time anywhere anymore, I've just lost the sparkle that I used to have and the control of the instrument I used to have in my playing. It might come back if I work hard on it, but these days I do practice, but don't enjoy it. I am not at the level that I can enjoy my own playing. It's depressing. And doula work, well, I did take on one client to be her doula in December. That will be a good indicator if I can keep doing births or if I'm left in bad shape afterward. And above all this is that I've always wanted to be a nurse. It fascinates me. I'm just not sure I can do it. But I'm only 51 and have a lot of years to get a new career going, and if I don't do that I'll stay unsatisfied with life. By the end of the mechina program, they will tell me what they think would be a good career path for me based on my work at the mechina. That will also help guide me to what would be the right thing for me.

So along with the weather changing, I am making changes. There are some really beautiful days we are having now, fall is here in the desert. It's a little cooler during the days, and the nights are heavenly. Don't need the air conditioner or the heater. I love that. Let's hope my changes will also be blessed!

Really God? More pain?

I walked into the ER on Sunday with unexplained belly pain and loss of appetite which had been going on for a week. I walked out, about 11 hours later, after being poked and prodded, having x-rays and a CT scan done, and a gynecological ultrasound as well, not much closer to an answer to the riddle. A few things showed up, but it just pointed to needing more tests.

Here I am still with the same problem. My appetite is all but gone, and the pain and pressure in my belly really only subsides when I lie down. But we can't live our lives that way... at least I am trying not to. But it's very, very hard.

I can't really explain what it's like to try to incorporate even more pain into my life. I go between saying to myself that this is all temporary to hearing that little voice in my head that says "no, honey, it's going to take a long time until this is worked out... if ever". I am dealing with a *significant* increase in pain here. And it's not as if I wasn't dealing with pain beforehand. With this, too, let us not forget that my knee is still acting up and hurts me constantly, and I have yet to clarify issues with that. Everything takes time, phone calls, waiting for calls back, paperwork, and waiting for appointments that are hard to get.

This is my life.
I lost out on being on the same planet as the working people at age 39. The doctor who I sued for malpractice, however, gets to keep his profession happily, and even throw me a big smile as we pass in the hallway of the hospital as he leads a band of residents he is teaching, Lord save them. "Hi Sarah" pleasantly surprised to see me. I did not respond. I could have said a thing or two to those residents at that moment. He's very lucky I'm not that person.

The community orchestra I had started to volunteer with last spring starts up again this week. I would love nothing more than to be there... but not this week. I can barely lift myself I am so weak, no less my french horn. My degrees and accolades hang on the wall making me long for those days. I am a ghost of that Sarah.

I may need some pain medicine, I don't know how I'm going to get through this if I have to be more active. I want to be more active, I can't let myself lose it. You know the expression "use it or lose it"...that's what I mean. Pain- it makes one "lose it". But you lose other stuff when you take pain medicine. We need to figure out what is wrong. My mind is going to the dark things- I try to stop myself from going there, it's a waste of energy. Unexplained pain is often a path to the dark things... I've seen so much cancer in my life. Many of us have, I know. I just have to keep it together and try to get in to see a gastroenterologist and get tests done. It all takes so much time. Weeks, months.

And I've put in a call to my orthopedic oncologist about my knee, hopefully we will get to the bottom of my knee problem. It may be PVNS (like a cancer, but not deadly, only deadly for the joint itself). I had that in the same leg, in the thigh joint. I hope it's not because that's pretty bad news.

And the infection on my skin graft is about to win the Guinness's Book of World records prize for the longest lived infection that won't go away and doesn't spread, just hangs out there. I went to the plastic surgeon the other day (yes, with the belly pain, in my condition, with Robert driving, dropping me off at the door, parking the car, etc). The surgeon hem'd and haw'd looking things over, pulled at it a bit (owww), and decided that it does need a scar revision procedure. He wants to cut away the whole pocket of infection, about 3-4 cm's, and stitch it straight. It would be local anesthesia, no new grafting, so it sounds OK. About a month recovery. Thankfully we have no date for that yet, and I am in NO rush to do that, as long as the infection isn't budging, it's on a back burner.

I have an ultrasound for my kidneys and urinary tract tomorrow. Nah, that won't be painful in my situation, not at all. :( Who knows, maybe it'll lead so some discovery of what may be going on here. There was some enlargement of the bile duct seen in the CT the other day, and I think I have (or used to have) gall stones, and that would be seen on the ultrasound tomorrow as well, so I don't know if any of that means anything as far as this pain is concerned, but it might.

The "chagim" or "high holy days" are coming up here next week- Rosh Hashana, followed by Yom Kippur and Succot. Very busy times, very important times. Times that I want to be in the synagogue to pray, and to be with my community. I haven't been able to go since I've been back in Israel, I've been too sick. Also with my knee the way it is I don't think I could walk that far. Although I keep thinking about that amazing hike I did in the Poconos in Pennsylvania! I hiked for about 5 hours, did 1,264 steps up and down (the people who keep Bushkill Falls counted, I didnt!), and that was just a month ago. Yeah, my knee was as swollen as a loaf of bread for a week thereafter, but I did it! And I have the tee-shirt to prove it. :) But with this belly problem, no way. I'm having a very hard time getting around. We'll rent a wheel chair for the holidays. That comes with it's own issues for me, but if it means the difference between being cooped up at home or being out, I do need to get out if I can. The question is if I am in too much pain to even get out for that long, even in the wheel chair.

One day at a time.
That's all I can do.
Let's pray for answers and solutions. I just have a sneaking feeling it's going to take a long time. And I am not happy with that feeling. This pain... it's just not OK. But I don't have much choice.

Mornings are the hardest

The mornings are the hardest.
I just cannot get out of bed, no matter if I've slept decent hours at night or not. It's partly due to depression, partly, well, me. This is the product of these past nine years of surgeries, illness and heavy medicines.

Can I hope that this will change?
Recently I don't hope for much of anything, to tell you the truth. I have it pretty bad.

I can still put on the happy face, though. But I know my kids feel the difference, I've been laughing less, enjoying life less, doing less for myself and them.

It is what it is.

It definitely could be partially the side effects from my migraine medicine. I take it every day, it's preventative. The good news is that it works; I haven't had a migraine in a good long stretch. Barely even a headache. The bad news, like always, is the side effects. It could be dragging me down emotionally and also making me feel so tired all the time. Those side effects are known about the medicine. At this point I do need the medicine, nothing else worked. The migraines, as we all remember, were horrific.

I kind of feel recently that my writing is useless... doesn't matter if I write or not. Goes with how I've been generally feeling about life, I guess. Useless. I know it's not true, it's just my mourning. My mother is gone, and I just watched Sabrina die. It's been a hard time.

they say that sometimes seeing a butterfly can remind you of a deceased person you loved

My physical health issues, for the most part, are much more under control than they have been since I had NF. Took a long time. The pain I deal with now is from two different places in my right hip... we don't know what is what. Endometriosis is one possibility, but un-diagnosable, and the other possibility is that my hip needs to be replaced. This is the right hip, from the surgery a year and a half ago. It's just hurting more and more every week. The success of that surgery didn't last very long, and although I need another MRI, I think it's completely arthritic, as it was at the surgery.

Tomorrow I head to Tel Aviv, to Ichilov, to my orthopedic oncologist for a follow-up for PVNS. That's the left hip... two different doctors for two different problems in two hips of the same person. I don't feel much pain with the left hip, so hopefully he'll just release me for another MRI in another year follow-up.

Skin grafts on Gapey are not happy- all dry and cracking, no matter how much I put creams on them.

I'm off to the northern beautiful city of Tzfat after my Tel Aviv doctor's appointment tomorrow. It's for my dear friend, Miriam Devora's wedding. Since I am in the year of mourning for my mother, I can only go to the ceremony part of the wedding (chuppah) and not the party, but I wouldn't miss it for the world. Robert and a few of the kids will come on Thursday for the wedding, too. Then we'll make our way back down south for Shabbat... and help other friends celebrate their engagement.

I am happy for everyone who I love and care for with the good things happening in their lives... and at the same time, the Jewish laws of mourning feel so right to me now (no public displays of celebration). I need that protection, mourning is an integral process of life and I feel fragile. So, I continue, as we all do, to search for balance in our lives, however that comes for us individually.

No plan, actually.

About that last post... ten year plan.... well, honestly I realize that there can be no plan. There can be no time line. I have days where I am closer to accepting that these changes I had in my "life plan" are here to stay, and days when I feel I am waiting for that past-tense Sarah to come back.

They say that you either get better or you get bitter. I used to be bitter about this all... all of it... the victim mode of how I got NF, all the diseases, pain, and surgeries that followed, everything. I don't think I am bitter at all anymore. And yes, I am better, but not all better, and I am pretty sure I'll never be all better. I have to accept reality, and not keep hoping to return to being the active professional musician and doula I was. It doesn't mean to give up hope, I have not given up hope. And I know I am a trillion times better than I used to be health-wise. Reading back in my journals, especially the CaringBridge ones (which I do often for writing my book), I am constantly *astounded* with how sick I was, for many many months; years, actually, and in so much pain. It is mind boggling.

My yearly follow-up for the PVNS in my left thigh brought with it a question mark the other day in Ihcilov hospital. I have been having knee pain. No injury, just some pain, going upstairs sometimes, and when I do Tai Chi or work out. Left knee. I told my doctor this, because he asked how my other joints are doing. He examined my knee, and then ordered an MRI. Suspicion of PVNS spreading to the knee of the same leg. It does that. PVNS acts like a cancer in that it can regrow new tumors whenever it wants, and in any joint. The difference is that it can't kill you directly. It can destroy a joint to the point of needing amputation if it is not taken care of early, but it doesn't have potential to take over the body. It's an oncological giant-cell tumor disease, but thank Gd not directly deadly.

So, now I have to take care of getting an MRI test for the knee. My personal gut feeling is that it isn't PVNS, but we have to check.

On another front- the headache world tipped the scales yesterday.
I had been nursing a headache for a few days with analgesics. Since the weaning from them, I am "allowed" to take them twice a week, but not two days in a row. I had taken them twice already, a little less than two full days apart, and yesterday a headache developed that I knew I couldn't medicate. Well, yeah, you guessed it. It got worse and worse until I almost exploded. I thought "maybe I should just ride this out, see how long it takes to go away on it's own". But, as the day went on, I was in so much pain, I could barely see, and I was moaning and writhing in my bed. It just kept escalating. It is so frightening. I threw up, too.

I took a cab to the hospital when I just couldn't take the pain anymore.

It took longer than usual, but I did finally get the IV "cocktail" that I need to break the migraine. Thankfully there was a good neurologist on call, and she remembered me from last time. She also agreed to shut off the lights in the room we were in, even though she needed to write on the computer. I so appreciated that.

I am home today, but still with a headache. Not a migraine, but I'm laying low.

I started the new migraine medicine today. I had been avoiding it. The reason I started weaning off the Lamictal (which I am still doing) was to start the medicine which is supposed to help the migraines. I hadn't started the new medicine, though, because I just didn't want to. I don't want more medicines in my body. You all know this has been a long-term goal for me. I hadn't had a really epic migraine since I was in NY a few months ago, so I was thinking maybe I just won't start the new med, and I'll wean off Lamictal, and my body has less medicines in it! Sounded great... until yesterday. Truthfully, it was like a two-day headache already by yesterday because I had been medicating it at home. The fact that it is lingering today makes it a four day headache. Even if this is "only" going to happen every few months, it is horrendous. And there is no telling when it will hit. I keep a journal of my headaches and trigger factors. There is no rhyme or reason any of us can see as to when they come. So, as I continue to wean off the Lamictal, I started the Depilept today. Let's pray this will help. I am sad about starting a new medicine. Side effects... what will happen now? I hate it all so much.

I have to close the computer now, my eyes are bothering me because of the headache.

Hopefully better news next time.

Not in a good space after an Epic migraine. Soldiering on anyway.

All I want is stability. Life is so crazy, and I am so tired of being in the world of the not-well.
At the moment I am sitting in a hallway which I have sat in, wasting time, all too often. It is the hallway where people wait to prove they need disability benefits, specifically for walking problems. It's a specific hallway, a specific disability. I'm here to prove again that I am worthy of receiving money from the state for having limited walking issues. I hate all this. I'd gladly give up the disability payments, the handicapped parking tag, everything, just to get a normal life back. I may not be back in time to take Azriel to basketball practice, the appointments for people waiting in this hallway are already an hour behind.

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I had to order him a cab for him to get to basketball. He's 10, told me he was scared to ride alone in a cab. I told him to call me and we'd talk the whole way he was in the cab. He did. I did. He got there.

I had my disability hearing. The doctor there had me lie on the exam table, he literally grabbed my legs, one by one, and threw them around to see if they work. I yelped, gasped in a breath. Now I'm in pain. Thanks, dude.

There is so much going on. I am so stressed out. I never know when a horrendous migraine is going to take over my brain. Like, take Friday night, for example... (5 days ago).

I felt that pain behind my eyes when I woke up on Friday. I knew I was "at risk".
But there is no medicine I can take to stave it off, I knew, like watching two cars getting into an accident, that it was going to happen, and there was nothing I could do about it. I prayed.
But like those two speeding cars you are helpless to stop from ramming into each other, the inevitable happened; a huge migraine. No medicines I can take. Total head-in-a-vice.

I finished making the kinoa stuffed zucchini for Shabbat, and an awesome gluten-free chocolate cake with white chocolate /banana/ whiskey frosting for Robert's birthday. It was outrageously delicious!

I said to Robert I'm going to need the IV of steroids at the hospital. This was about 5pm on Friday. We were thinking about asking a friend to take me to the ER because the kids were alone, and Shabbat cooking was in high gear. Robert called a friend or two, didn't get anyone available, then I told him to forget it, I made a plan. I'd drug myself to sleep with sleeping pills and Zanax, sleep it off until the next day. I did NOT want to go to the hospital. I hate that place.

OK, he called it off.

I took the pills and Cannabis oil, and waited it out in a darkened room, moaning in pain.

The migraine intensified so much that I was yelling in pain. This was two hours after medicating myself. It was 50 on a pain scale of 1 to 10.

Robert took me to the ER.

Before I got my IV cocktail, I actually passed out. I don't remember it, but Robert told me. I was writhing in pain on the hospital gurney in the ER, clutching Robert's hand, and at some point Robert said my hand went limp in his, and it got quiet. I passed out from pain. For the third time in my life. First one was the night I went back to the hospital in pain, four days after the original hernia surgery. Second time was when I had the cellulitis 4 months after NF. Now I passed out from a migraine. It's *that* bad.

I got the steroid/nerve relaxer IV cocktail, and the migraine subsided. Pain level went from a 50 back to a 5 or 6. I was grateful. (not sure if the little Beduin nurse who inserted my IV lock was so grateful when she could barely get it in; I couldn't stay still because of the pain. Foul language may have flown out of me...).

We went home. The guest we had invited for Shabbat dinner was just leaving. Turns out he came over, had Shabbat dinner with the kids, and he was just leaving when we returned. Life is so strange sometimes. But I was glad he was there with the kids. Really glad, actually.

Shabbat day (Saturday) I slept in the morning, and we had guests for the afternoon. It was a heat wave- 105 fahrenheit. Our friends stayed all day; it was their last day in Israel for at least two years, we wanted to squeeze all the togetherness we could with each other before they leave. My 10 year old, Azriel, is very close with the children in that family, so we drew out our time together as much as possible.

But I was not in great shape, I gotta say. I have to be more careful. I really needed to rest after the insanity of the night before, but I pushed myself. I am so much about connection with people, it is hard for me to even hear my own needs sometimes, until they scream at me.

The one thing that kept another migraine from blooming was that I was still on the steroids. There was a migraine in my head, but it didn't bloom because of the steroids. I don't know how else to explain it. That is exactly what it felt like.

I am on the steroids all this week, by pills. I am tapering off from getting the huge dose on Friday night. What happens when I am off them? Only Gd knows.

I am waiting for a date for an MRI scan. It is now in the system as "immediate action necessary", but I don't have a date yet. We are going to the states July third, I really hope to have the scan before then. My neurologist says he can't continue with a treatment plan until he sees an MRI. I feel this is the first time he dropped the ball... he's really been excellent for me. But he didn't order scans early on, and now I have weaned off all the headache medicines, and the migraines are in full force, and I have no medicines to take and no treatment plan. The ER is the treatment plan. It sucks.

Meanwhile, I have four kids to care for. Each one of them is a world in his/her own, and I am their mother. And I'm not even referring to the tip of the iceberg of cooking and cleaning and laundry. That's nothing. I have three teens and a 10 year old. Dov (17.5 yrs old) is knee-deep in matriculation exams and is stressed out, Ya'akov (16) is switching schools and is struggling on a daily basis with life. Shifra... Shifra is 13. Need I say more? Ten hours of ballet a week, school work, heart-to-heart talks on a regular basis, problems with friends, clothes, contact lenses, braces.
Azriel is my easiest kid... I deserve one, don't I? :)

There is seemingly no end to the medical paperwork we need to fax here and there on a daily basis. Referrals for the two MRI's I need: one is my yearly left hip MRI for the PVNS follow-up (coming up in a few weeks), the other is my head/brain. I need paperwork for those. I need to fax receipts from the doctors I see privately to our private insurance if we are to get reimbursed. But, since those receipts were lost, I had to go to the clinic today and get them to reprint them and I had to physically go to the doctor to have him sign them and stamp his rubber stamp on it. And the phone calls.... constantly organizing things with phone calls. I know you all have to do that, too, but today it is just all too much for me.

BUT......

I paid for a series of ten massages from my favorite masseuse... I hadn't gotten a real therapeutic massage in many years. So, doctor's orders, I called her and signed up. I've had two already. This woman is so strong, and MAGICAL. She thought I was calling to pay for ten massages for Ya'akov; we did that for him in the past because his tics from Tourette's make his body very tense. I told her they were for *me*... that felt good. And feels good.

And I still did Tai Chi this morning.
And I plan on going to the gym tomorrow.
And I am taking care of my friend's 6-year-old daughter all afternoon tomorrow.

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I saw my neighbor today and she asked me if I am bored not working. She said she is so bored at home with her 1 year old, she can't stand it. I was literally tongue-tied for what to say to her. We've known each other for 15 years... I told her I'd do anything to be healthy and be at home with my baby.

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The appearance of MRSA

You haven't heard from me in a long time, I know. I miss writing. I've been so insanely busy, I have literally not had any time to myself in which I wasn't trying to sleep. Raising four kids takes so much mental and physical energy... school conferences, doctors of all sorts, activities... I mean, thank Gd. But it's hard, and it's especially hard with pain.

Things have been crazy, but mostly OK, personally and in my family's corner of the world. I say it that way, because we all know that things in Israel have been anything but OK, with the terrorist attacks going on. But I am not going to write about them, or how we have been effected.

I need my blog for other intense, pressing things in my life.

So, even though I still don't completely believe it is going to happen, my surgery is still scheduled to happen on Monday (the 19^th). Why do I say that I still don't completely believe it is going to happen? There have been two times I've had surgeries scheduled, I showed up as scheduled, and for different reasons they didn't happen on that day. The first one was for the PVNS excision. My parents had come from the US to help out with the kids after surgery. I showed up in Ichilov hospital at the appointed time, and went through the check-in process. When I got to the orthopedist, he apparently wasn't aware of the skin grafts and scars covering the hip where he needed to operate. He said he wasn't properly prepared, and that we'd have to postpone until he “maps out” his plan to operate. The surgery wound up happening about three weeks later, with the partnership of another orthopedist, but my parents couldn't stay to help out.

The second time I went in for surgery and it wound up not happening was, of course, last summer with the whole allergic reaction thing. That is the procedure which is supposed to be Monday.

Do I have any reason to think it may not go forward? Well, ...yeah.

I got a call from my doctor a few days ago. She told me that the nose swab culture test I did as part of the pre-op tests came out Bacteria Positive. Positive for MRSA. Yeah, I was shocked. MRSA is another hospital superbug. I asked her how that could be. She asked me if I'd been in the hospital recently, and, of course, the answer is a big yes. I spend most of a month in the ICU with my friend who was on a respirator. She said “Bingo”. I am carrying the bug, but it's not making me sick. It is in the mucus membranes of my nose. I remember doing these swabs every time I was preparing for surgery, but until now it never came back positive.

One thing that this means is that doing that test may have actually saved my life. I am now using antibiotic cream to eradicate the bug, and I have a few other antibacterial instructions, as well. If I went in for surgery with this bug active in my system, I could have gotten very very sick after surgery. AGAIN.

Yesterday I had pre-op with the anesthesiologist.

Today I had my pre-op with the orthopedist.

Both were at Assuta hospital in Tel Aviv. Lots of traveling, very, very hard for me. I had scheduled both appointments for the same day, but something messed up- I'm not sure if it is the hospital, or my cell-phone scheduling program, but after begging and pleading with the orthopedist's secretary yesterday, there was no way to change it. So I came twice. It is what it is.

Today I had a talk with the orthopedist regarding the whole issue of MRSA, and pre-op antibiotics. He said he's going to consult with an infectious disease doctor. As of yet, we don't know if we'll use pre-op antibiotics or not. The orthopedist said he usually does do pre-op (also called prophylactic) antibiotics, but is not convinced that it actually makes a difference. I won't go into his whole explanation of that, but it sort of made sense. Except that this is me, and that means everything is not usual. On the one hand, prophylactic antibiotics caused me a huge problem last time, and in fact caused the surgery to be canceled. Now my antibiotic "repertoire", if you will, is smaller. I don't want to risk that happening again. On the other hand, I am MRSA positive, and treating it with topical antibiotic cream. What if it's not eradicated by the cream, and having surgery will cause it to bring on a full-fledged infection? It's very, very scary to me.

Does that mean things are still up in the air? I think not. I think the surgery will proceed on Monday. The orthopedist didn't seem overly concerned (but that doesn't make me confident). What I do know is that if Hashem wants it not to happen, it won't.

I am ready to do the surgery on Monday. I want it over, I want to be on the other side already. I want to get on with life. I am scared, and nervous, and this whole MRSA thing (which the orthopedist says he's seen about 50% of the time, but articles I have read say only 2 people in 100 carry MRSA) is making me feel more pressured.

I want to get rid of the pain, and I want to play horn again. That's my plan.

What is Hashem's plan?

This is scary. But I want a chance like anyone would to have a life with less pain. I have tried many ways to deal with it, and nothing can make the tear correct itself. It only hurts more and more as time goes by.

I want my life back. Pain is a very lonely way to live life. Most people don't have full-time pain, and most people would not withstand what I am going through. So why should I? I want an experience that fixes what we set out to fix. Then I can move on.

Can I move on without this procedure? Of course. With pain. But can I do what my heart wants to do to enrich my life (play music)? No. Living with pain is too all-encompassing. It takes triple the amount of energy to get through the day as it would (I imagine) getting through the day without pain. 

There is a fix for this problem. I want it fixed. Why am I faced with this infectious disease thing again? What am I supposed to learn from it? The phrase "no good deed goes unpunished" pops into my head. Spending time in the ICU with my friend this summer left me with this problem, even though I was *so* careful about hygiene all the time.

Another challenge for my emmunah (faith in Gd). What ever is supposed to happen is what will happen. I have to be satisfied with that for now.

Compartments

My world these days seems fragmented; compartmentalized. I have two different doctors for my two different thigh joint issues.

I go into the hospital (Soroka here in Be'er Sheva) on a daily basis to support my friend who is going on her third month there. I see her doctor often. That would be no big deal if he wasn't the same surgeon of my own NF history, but he is. I'm compartmentalizing that. No other way to deal with it. So, I deal.

I leave the hospital world behind me when I walk out of there, but things ruminate in my head when I am with my children. Still, I work on closing that door when I am not in that world.

Yesterday the compartments overlapped a bit, and it was weird. what happened was that since Shifra's new junior high school is right across the street from the hospital, and since she was finished early because it is the first week of school, I told her to come meet me in the hospital. She knows my friend and also wanted to see her. On our way into my friend's room, Shifra and I holding hands, we ran into the surgeon in the hallway. He noted that she is not 4 years old anymore, comparing to the last time he saw her, when I had NF. Yeh, that was weird. Our visit with my friend was fine, and Shifra was fine with the "sick world". For better or for worse, it is not foreign to her, obviously (I think she may have "doula" running her veins, too). But then my friend started to have an attack of tremors from fever, and it got scary quickly, and Shifra needed to leave the room and wait for me outside. Then I called her doctor from my phone... she wanted him to know she was in trouble [again] and that I have to leave to go pick up my own kids, and could he be with her because I didn't want to leave her alone..... my compartments got all tangled up. I called him from my phone. It is just beyond strange. I need to step back, it's too tangled. I need stronger compartments. I need stronger boundaries.

I want to start playing horn again. I am vividly dreaming about it. I need to structure time to do that.
I have my own complicated health things to take care of, which often means making phone calls and sending faxes and being organized. I need boundaries, to take care of myself and my family, and compartmentalize my friend's needs, but at the same time give to her when I am with her, with all my heart. Many hours have been spent in the hospital over the months. That is my choice. I am now beginning to see that it is going to be a long haul. I have many priorities, and I am readjusting my compartments.

OK, now a bit about my own health stuff; my "compartments", as it were.

Right leg: Monday. I had the MRA test privately, paid many thousands of shekels out of pocket. I didn't want to wait until December to get the test and schedule surgery. We are planning to bill our private insurance for it, and planning that they will pay. They say they pay for private MRI's, but not MRA's (arterial). We'll see about that.

It is an awful test. This is the second time I have done it on my right leg. First time was two years ago and it was awful then, too. It involves sticking a large needle with radioactive dye into the femoral artery, through the joint itself, in the groin. It hurts like hell. That is, until the Lidocaine (local anesthetic) takes effect. All this for the privilege of seeing what damage lurks in the arterial areas of the joint itself. Or something like that. Then, after the shot takes effect, the test is a regular MRI, in the white tube, with lots of jackhammering and pounding noises. My PTSD hates those noises.

I limped back into the car (Robert was with me, thankfully), and spent the rest of the day in bed, proverbially licking my wounds. Apologized to my friend that I couldn't see her in the afternoon. I had thought I could. Yeh, right.

Left leg: Tuesday. I went into Tel Aviv with my right thigh joint still aching, but not in acute pain. I stopped by my friend in the hospital in Be'er Sheva before I got on the train to Tel Aviv. She wanted ice pops, so I put those in the freezer for her and sat with her for only about 15 minutes before I had to go catch my train.

I got GOOD NEWS about my left thigh joint! Not only did the last MRI (in June) prove to be PVNS-free, but the fluid that had been around the joint for the past three years has mostly gone away. My doctor (orthopedic oncology) said he could have never imagined that three+ years after PVNS, and another surgery thereafter, that my joint would looks so clean. He said my MRI was pretty. Aw, gee, thanks, doc. ;)

My follow-ups at ortho-oncology used to be every three months. Then it went to every six months; the bi-annual MRI. Now, he said he doesn't need another MRI until next year. I've been sprung for a year! It's good news. Less traveling into Tel Aviv. fewer MRI's, more quality time for good life.
I told him I am planning the surgery for the right thigh joint, and he said he feels confident that I can depend on my left joint to carry the weight during healing the right one. That was also comforting. He said to listen to my body, and give lots of rests for my left leg after surgery- it still has scar tissue and will tire easily. I said "OK, boss".

Then as good fortune would have it, dear friends were in Ichilov the same day I was, with their daughter for a medical visit. We met up after our appointments and went out for sushi! It was such a treat to have a positive day at Ichilov and enjoy life together with my friends. Entirely memorable. :)

Now, as you can see, I took the morning off from going to Soroka, to my friend, so I can relax and write. I also will be starting to play horn soon. I gotta write about it first, though, right? :)

Now to sum up all these different compartments, I have one very important thing to say:

I am so happy to be off the Fentanyl.

I got my life back.

I feel active, alert, and

ALIVE.

I am positive that it is better to live with the level of pain that I have than to be doped up.

Thank you, Gd, for bringing me to this place in life.

Strength in challenges, and challenging strength.

I've been spending lots of time in the hospital with my friend- the one who was in ICU for six weeks. She is now out of ICU, and getting stronger by the day. It is nothing short of a miracle. She almost died more than a few times, and now she is healing. She still has a long way to go, but she will get home, with help. I try to go to her every day, but it doesn't always happen. It's going to be a busy week.....

I am feeling so strong these days, I feel my own miracle. I haven't felt this strong since I had NF, I think. Being off the narcotic pain meds (after six years) has changed the quality of my life many-fold. I am stronger, and not as sleepy. My digestive system is awake and working properly, and that is such a gift, you probably can't imagine. I can handle the days better. Even the jet lag wasn't as severe this time.

It's the first time since I got sick that I am not on any pain medicines. Do I have stronger pain? YES. Can I work on myself to appreciate feeling strong while dealing with pain? So far, the answer is yes. I will not go back there, to narcotic-land. I've had a taste of freedom and I like it. I even have my new licence for cannabis, all I have to do is take a trip to Tel Aviv once, and thereafter they would deliver the stuff directly to my house. But, after the two week trip to the US which we just did, I decided not to pursue that route. I want to be off medicines, [almost] at any cost. I made it through difficult days traveling, and the entire vacation without pain relief. I don't want to be reliant on drugs. It's there, though, if I change my mind.

Now, what to do about the pain? It remains the most difficult aspect of my life. 24/7 I feel all different kinds of pain: from my right thigh problem, from Gapey (I still have trouble with the pins that are holding the mesh behind Gapey), nerve pain, left thigh joint pain, and recently dealing with a bad rash around Gapey as well. The rash is because I have to wear the pressure garment every day... it is for controlling the lymph-edema. Also since it has a pocket for the prosthetic pillow, I am more comfortable in my clothes with the pillow filling in the concave hole which is Gapey. But, it is awful in the summer. It is nylon. And tight. Makes me crazy, you can't even imagine. But if I try to do a day without it, the lymph-edema pain comes right back, and I wind up swollen. Problem is that the skin around Gapey is very sensitive, and a bit of sweat can cause a heat rash. This nylon is not absorbent. The rash does not go away with anti-fungal cream. It is soothed with tea-tree oil spray, and that is what I use for the time being, but that doesn't take it away, just calms down the inflammation/irritation. I put soft cotton around Gapey in the pressure garment; it's a whole procedure. It takes longer for me to get redressed and organized with the cotton and whatnot after using the bathroom. Oh well, compared to my friend in the hospital (who is going to have a MUCH bigger Gapey) what I am dealing with is small.

Having said that, I'll tell you about what is up for me this week.

I am doing an MRA test on Monday. It differs from an MRI in that contrast dye is injected directly into the artery of the joint, and I won't be able to walk for a while. It's very un-fun and last time I had it (two years ago) it left me in strong pain for a few days thereafter. The good news is that it is being done in the one private hospital right here in Be'er Sheva (*not* Soroka). The bad news is that neither the national health fund nor our private insurance will cover the cost. I have been trying for weeks to appeal and get them to cover it. It's an expensive test- over 5,500 shekels ($1,200 US). After discussing it at length with Robert, and considering the other options which the health fund *would* cover, we decided to go for this time-and-place on Monday in Be'er Sheva. There are only four hospitals in the country that do this particular test, and I have called them all and faxed all of them my referral. The closest dates they have are in January. That would mean, if I wait to get this test until January, I won't be able to do the surgery until afterward. That is a *long* time away. Remember, I am not on pain killers, and this is quite painful. The sooner I have this test to bring to my new orthopedist (also private, but my private health insurance will cover that surgery), the sooner I can do the surgery, heal, and please Gd eliminate that source of pain. Bilateral hip pain is the PITS.

The very next day, Tuesday, hoping I am in decent shape, I am supposed to go into Tel Aviv to Ichilov hospital for my follow-up for PVNS. I think I am the only person in the world (well, maybe not the whole world, but you know what I mean) who has two different doctors for two different legs. The left is orthopedic oncology, the right thigh joint is straight-forward orthopedics. How did life get this complex? Well, yeah, we know the answer. But I will reiterate, I am, at this point in my life, after having gone through the h*llish withdrawal from Fentanyl for 10 months, the strongest physically and emotionally I have been since I got sick 8 years ago. Thank the Good Lord.

So it's looking like surgery will be in the next month or so. It depends on the surgeon's schedule. I want to get it over with already. Remember, this is the surgery that I had to put off last summer when I turned into a tomato on the operating table seconds before I was put to sleep for the surgery. I upped the Fentanyl at that point because my orthopedist "fired" me for being too high risk. I needed to cope with the pain. Then I had the cellulitis hospitalization which happened after the allergy testing for antibiotics. That was a crazy time. I think this may be the first time in 8 years that a whole year has passed without me having an infection or hospitalization. Did I tell you yet how strong I have been feeling? :)

OK, gotta get to sleep. I have a teenager in angst about starting her new junior high tomorrow. Had a long heart-to-heart with her and she went to sleep feeling good and confident. I love that. I love that I am a stay-at-home mom for my kids. Even when I'm sick or recovering from surgery, I am here, at home. It means the world to the kids, and to me. Having said that, I am looking forward to school starting and reclaiming my days and starting to play horn seriously again. I want to take up the offer my orchestra partner put on the table; that being, as soon as I am ready, he has work for me. I want to get my feet wet again with my music, I miss it so much, I ache to play again. I don't know if I can get to the level of professionalism I used to have, but I am planning on starting to practice with a goal. Pain is sometimes in the way, though. That is why I can't work. I'll take this one day at a time. Working and having surgery don't go together. That's why I get disability payments every month, because I can't work. But I am determined to try. I miss that aspect of myself... it's a huge part of my life that was cut away with Gapey. While I cannot regain the losses of having had NF, I hope to regain being an orchestra (or chamber music) musician.

As far as my doula work, that must remain on hold. It is too challenging to be the person that people will rely on. It is too physically draining, and I have too many physical restraints stopping me from doing a good job. Helping out my friend in the hospital is like being a doula. Now that she is awake and aware, no longer in ICU, she needs lots of emotional support. Each time I am there with her I massage her feet, and speak soothing words, much like I did with pregnant women. I need to give, it is in my nature. I am searching for balance, and am creating a plan about how to achieve that. With Gd's help.

Good night, a new week is around the corner. Let's pray I feel as strong at the end of it as I do now.

Please continue praying for my friend, Shoshana Chaya Bat Bassie. She is getting stronger, but is not out of the woods.

May this week bring health, strength, and loving kindness to all of us!!

Short update, MRI results

There is too much cancer in the world. What's up with that? So many people are sick in our society, and not enough people are doing anything about it. It's weighing heavily on my heart today after a friend, already post cancer, had surgery today to remove a new tumor. There is just too much damn cancer. I've lost too many loved ones to it.

May my friend who had surgery today recover fully and live a long, fulfilling life ...amen. (her name is Shoshana Chaya bat Basiya, for anyone who can put in a good word with the Big Guy)

The good news, is, however, that it is looking like I don't have PVNS. I got the results from the MRI. The person who read the scan did not report any synovial inflammation, or tumors, but that person isn't an orthopedic oncologist. I have to give the disk in to my ortho-oncologist to get the "all clear". I am optimistic, though. The initial reading is good.

I was surprisingly perturbed to read that there is no tear in the labrum reported. The person who read the scan reported no tear on the right side. I realized later, though, that my orthopedist said it can only be seen in an arterial MRI (MRA), and he diagnosed it by the MRA I had two years ago.

I was perturbed because it hurts so much, I couldn't imagine a report of "fine". I know it's not fine, and it is important for me to know that there can be name for it, and a fix. It is about Hope. I need to hold on to hope that I can live a good life without pain meds.

I need to find another orthopedist (not to be confused with orthopedic-oncologist; there are only four ortho-oncologists in the country, and they handle the PVNS). It's the "regular" orthopedist who deals with impingement and labrum tears. Two different specialties for two different problems. Anyway, we're going to call the medical rav and get a referral.

I can't write more. It's been an exhausting day, and my feelings are so mixed up.
I just want to be out of pain and off medicines. Today, what makes me sad is that I'm not sure if that is ever going to be realistic.

A Sarah sandwich in a tube

We are on our way to the MRI now. I am typing in the car. Robert is accompanying me, I'm happy about that. I don't have to do the driving.

I've been fasting for four hours, and living in the desert, my mouth is completely dry.
I'm looking forward to this being over, and receiving the results, whatever they are. I need to know what is going on, I feel like I can't  move on with anything until I know what is with all the pain.

What I do know, and it makes itself blatantly clear on a hourly basis, is that the Fentanyl still isn't completely out of my cells. A few days ago I almost went straight to my doctor. I felt that I didn't have enough oxygen to breathe. I felt that feeling of a cinder block on my chest, and it is scary. When I walked, unless I went really slowly, I would feel out of breath. That medicine is serious stuff. I told Robert that I needed to go to the health clinic, I felt I needed an oxygen mask. He did his thing... going down to check the internet again about Fentanyl withdrawal. He came up with studies that show that since Fentanyl is stored in the fat cells, it can take up to six weeks to exit the body, because apparently fat cells detox at a slow rate. I'm sure it's some "survival of the fittest" thing, but whatever it is, it did comfort me some that this is just another expression of more withdrawal. I just didn't expect it to carry on for so long, and to repeat a stage I thought was finished. Now I know. I waited it out, and indeed, it passed by the next day. What I know now is that I am not done with withdrawal. I wonder if more pain, on a deeper level, is also going to make an appearance? Let's hope not. I don't think I could handle that.

~~~~~~~~~~~~~~~~~~~~~~

OK, the MRI is done. But W O W, it was the longest one of my LIFE. I've had an MRI every six months for 8 years now, and never has it been this long. At the end of it, when I couldn't move myself from the stiff position I was in for an entire hour, the technician told me that he needed to be very thorough, making sure everything is clear and visual for diagnosing PVNS, and for the impingement and labrum tear. He did the same on both thigh joints, and he said he also scanned the lower abdomen. He commented on the amount of clips around Gapey, holding the mesh there. Apparently he was impressed.

I prefer CT scans to MRI's although health-wise CT's are much more problematic because of the amount of radiation. MRI's don't use radiation, so they are a completely safe diagnostic tool. But, while a CT is like a doughnut or bagel around the area to be scanned, with all other parts of the body not in the doughnut, the MRI is a big white tube, where if you have your eyes open, all you see very close up is that you are in a very snug tube. I feel quite claustrophobic if I open my eyes. I'd rather just keep them closed and ponder things. if I'm lucky, I get to disassociate and be somewhere else entirely.

Then there are the heavy "antennas" they put under my back and on top of my entire middle- heavy "H" frames that are velcro'd together, front and back, making me feel like a Sarah sandwich. My arm has an iv in it so they can push the contrast dye through my veins at the appropriate times. In this particular MRI, I felt that stuff being released into my vein four times. Each time the fluid gets released into the vein, one starts to feel weird, burning in the throat, hot in the face, then the whole body, especially the middle, gets cold/hot feeling all at the same time. It is not altogether awful, but not pleasant either.

Then, there is the noise of the machine itself. I decided (having much time to ponder the sounds) that it is like being inside a video game with your head as the amplifier, with random jackhammer pounding whenever it wants. One has to wear small foam earplugs (they give everyone their own, fresh pair), and a large foam headset to protect the ears from the volume of the noise. And even with those, it feels like your head is a video game being occasionally overrun by jackhammers. Anyone want to add their personal experiences to this description? I wonder if other people experience it differently.

Home now, still feeling icky from the contrast dye, but it'll pass. You are supposed to drink a lot in the next 24 hours to wash it out of your system.

In the meantime, you know what?

Hashem is showing me perspective. We have one dear friend fighting for her life for 6 weeks already in hospital after a stage 4 cancer diagnosis. Today I heard of another friend who is pregnant with twins (which I didn't know, L.E.!), and simultaneously got a diagnosis of breast cancer.

I have another friend we are worried about... make that another two friends- who have cancer scares looming over their heads, waiting for diagnoses.

So I had a hard MRI? Ill get over it by tomorrow. I don't know what to expect in the evaluation, but for now I have perspective that as hard as things sometimes feel, right next to you is someone who needs your urgent prayers.

Please pray for Chava Yehudit bat Rivka.

yours, truly... Sarah Rachel bat Tova.

Addendum: it is with great saddness that I must notify you that my friend Eva Weil, written above with her Hebrew name- Chava Yeuhudit Bat Rivka, passed away today. Baruch Dayan Emet (blessed is the True Judge).

Pain. Acceptance. Faith. (eat, pray, love?)

I am honestly not sure if I can keep going with this level of pain. This is what was lurking behind all that narcotic pain medicine, and it is hitting me like a hurricane. I had hurricane warnings, so to speak, but it is much stronger than I thought it'd be. It's very nice to go off pain killers while the medicine is still actively helping with pain. I learned that we *do* forget pain. Just like they say with women and childbirth; if we didn't forget pain, we'd all only have one child. I forgot what was there at the outset of this pain-relief seeking episode 5 years ago, after the surgery to put the mesh into gapey. Either I forgot, or I was lulled into thinking that after this long, it's sure to be better than it was then.

I am presently unmedicated, thank Gd, but what does that mean for the long run?

Well, one thing I pretty much know, almost for sure, is that I will be going through with the surgery to fix my right thigh joint. I have had a lot of fears about it, understandably. What I know is that getting rid of the problem in the right side will lessen my burden of pain exponentially. It won't alleviate it altogether, because the left side bears the brunt of much damage and causes pain as well, of course. I intuitively feel, and have confirmation from the important people in my life, that fixing the right thigh will, in the end, be beneficial if I am going to live life unmedicated.

I have an important MRI on Wednesday. It is for both thigh joints, pelvis, and abdomen. It's going to be long (they told me 45 mins to an hour), and since I have to be fasting, I know it is with contrast agent intravenously, as well. I am relieved to finally have the test, and know for sure what is going on in me. The biggest question is whether or not the PVNS is in the right joint. If it is, than we have no choice but to operate and get it taken out. If it isn't, and the pain is from the impingement and labrum tear, than I have pretty much decided I will fix that, as well. So, unless there are findings of PVNS in the left thigh joint (which there was in 2008 and  has a 50% rate of recurrence), I am looking at surgery for the right thigh, probably in October, after the Jewish holidays.

Well, I can plan, of course, but whatever really happens is the Big Boss's decision.

What I do know is that now more than ever I feel that I am in category of "chronically ill". I hate that label. Since I went off the pain meds, though, it has become clear to me that I am there. You'd think I'd have admitted that years ago... all I can say is that there are differing levels of acceptance of one's situation in life over the years, and having increased pain has been an eye-opener for me. It's forcing me (and my family) to realize that the situation is worse than we had been accustomed to. A wake-up call. I am not willing to go back to narcotics- no way. The price was too high, with no end in sight.

I guess any way we slice it (no pun intended), in May of 2007 when I got NF, I was entering into an uncharted world that would change every single molecule and centimeter of my and my family's known existence. I never dreamed of retiring early from my careers (I was 39). I thought we'd have more kids. I was in the prime of the "creative years". I never dreamed of any of this. I don't want any of this. But as I teach my children, accepting reality is the first step toward faith. I say that because usually accepting reality means accepting a circumstance that we don't want or are not happy with. Admitting that we are in a situation like that, in my eyes, naturally lends itself to striving to make it better. In my world that means turning toward Hashem, and leading a life of emunah (faith). The more connected we are with that Life Source, the more our life is blessed with what we need.

Like the Rolling Stones said, (with a beautiful horn solo in the beginning of the song) "you can't always get what you want...... but if you try sometimes... you get what you need." The "try sometimes" is where the growth is. "Try" is related to the word "trial". And that is exactly what these experiences give us, our trials that comprise our lives.

I. am. narcotic-free.

It started here. September 21st, 2011. Go read it, it's worth the read.

It ended today.
I took off the last half of that little piece of "clear tape" this morning. Fentanyl and me, we are

D O N E .

Left-overs.

I am still having withdrawal. It is unknown how long that will last. I am fuzzy-headed, tired and sleep-deprived because of insomnia all the time. I have to get off the sleeping pills, too. That is my next goal to conquer. I know now that I can do it.

I saw my healer on Sunday (Miriam Maslin), and we worked a lot together to come up with plans and resources to help me regain [more of] my health and strength. I also have a working plan to get off sleeping meds. Oddly enough, I have a gut feeling that I will start sleeping normally when I do. Eight years of sleeping pills is a long time. Enough. Once I get the sleeping back on track, life will be so much easier! It is ****so**** hard to live with insomnia. Life is always out-of-whack, 24/7. I can't even nap anymore. I can lay down, exhausted, but deep sleep does not come.

I will work my way out of this.

I got off of 100mmg of Fentanyl in... what... 7? 8 months? I can do *anything*.

My body will be less toxic. (It already is!) My digestive tract is slowly coming back "on-line" after being assaulted with narcotic pain relief for five years. Slowly. But surely.

And the pain?

yeah, it's there. Sometimes lots of it is there.

We borrowed a wheelchair to get to a BarMitzvah on Shabbat, and I was in pain the whole time. (I danced at my cousin's wedding on Thursday, and my entire pelvis was totally seized up and in pain Friday... could have something to do with that).

The newest question is whether or not I should fix my right thigh or not. Not fixing it means I will live with the pain, as I am now, and as it gets worse I will re-evaluate. Many people have told me, however, to not let these things get worse... it makes the surgery more complicated. My physical therapist said to me yesterday that if it hasn't gotten better in the three years since it was diagnosed, and indeed has gotten worse, there isn't much of a chance for it to get better on it's own, no matter how well I take care of myself and it.

I have an MRI scheduled for the end of June. I plan to wait to see those results and then decide. First we have to know if I have PVNS in either joint. We already know (from numerous MRI's) that there is a tear in the Labrum of my right thigh. That isn't an emergency. PVNS is. So, much like a cancer (but NOT cancer), each scan holds tension and question marks until results are obtained. PVNS is a rare tumor disease in which the tumor(s) grow on the synovial duct- the ducts which bring the synovial fluid (likened to the oil for the joint) around the joint. The disease itself can, Gd forbid, cause one to loose a leg. In that way it is like a cancer in it's destructiveness, but it does not grow outside of the joint, so it is not deadly. (Actually in one case we saw on the internet, PVNS *did* grow outside the joint, but it was an isolated case).

I had that in my left thigh joint in 2008. The surgery to get rid of it is called a "synovectomy", which was successfully done in that year. Then the next year (or two years later? I don't feel like going through the blog at the moment to look for it...) I had another surgery on the same left thigh to fix the tear in the labrum, like I have now in the right thigh. Is this confusing? Yeah, I know it is.

So, the left thigh, with it's NF "hole" (Gapey), skin grafts, massive scar tissue, mesh holding in my innards, and two orthopedic surgeries afterward is often where I have pain. Obviously. Now, without the Fentanyl, I feel it much more sensitively and more often. OK, I can cope... usually (not always, as we saw this weekend after I danced at the wedding). The right thigh only has a tear in the labrum and impingement (the condition is known as FAI). That has it's own steady pain, but different than the left. Fun, right?

All I know for sure is that me and narcotic pain relief are FINISHED.

Whatever the future holds will be guided by Hashem, as it always is. And I thank Him for giving me the strength do this monumental task of getting off the Fentanyl.

I can hardly believe it myself. I'm done with Fentanyl. THANK G-D.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Post-script: I wrote that in the morning... now it is evening, and it's been an awful, awful day. Such strong withdrawal, I feel like I went off a huge dose, cold turkey. My body is in shock. I have brain-zaps, shaking, tremendous weakness and shortness of breath. I am functioning, though. I have been making healthy food for the kids, holding conversations, and driving to activities. No choice, right?

I pray that this will pass soon and I can enjoy my accomplishment. One thing I did enjoy this morning, before things got hard, was this: taking a shower without having to worry about my sponge rubbing off the patch on my upper arm. I have wanted that for a long time. It was a small, yet triumphant feeling.

I am nervous about how the night will go. At this exact moment, my left leg is vibrating and shaking from the RLS. Send up a prayer, if you have one to spare. And thank you, as ever.

Sarah Rachel Bat Tova