Flu. Bleh.

I jinxed it. I knew I shouldn't have written how things are getting back to normal! Who do I think I am trying to escape the view of the evil eye? ...getting back to a schedule.... yeah right.

I got this year's version of the winter flu. A lot of coughing, laryngitis, bits of fever here and there. Not fun at all. I know my immune system well enough to know it's going to kick the flu's butt, but it's gonna have to run it's course.

What's *really* not fun is having this swollen throat and cough with the click-clack of my throat cartilage problem. When I get better I am planning on going to a cranial-sacral therapist to try to relieve the misaligned cartilage problem. It is **really** annoying.

Another side effect of coughing so much?
Gapey is killing me. I really hope I didn't rip anything apart in there. It's a large patch of thin skin graft without any layers of fat. The stomach wall muscle can be seen through the skin, it's that thin. I am worried about the supporting mesh that is in there. Every time I cough it is an experience in muscle spasm pain on my left side. Not good. I pray it goes away when the cough does. If that gets damaged, I'm in trouble. (once, when I lived in the states, I dislocated a rib when I had bronchitis. I can *really* cough...)

Another worry is that since I have canceled my physiotherapy and cannot go to the gym, I am worried that my leg progress will regress. I am exhausted from being sick, and can't do my exercises... lets pray that the leg will continue on the exact path it needs for healing.

It's more painful these days, maybe because of all the cold rain we're having, who knows.

In general, well, yeah, that's about it. I am taking care of myself, and my kids are being very helpful. And Robert brought me chocolate. It is scientifically proven to help coughing!
Today I reached out to ask a friend for driving help, so I don't have to go out. Thanks, friend!! :)

Gonna go take another hit of cough syrup.
This, too shall pass.

Two weeks after surgery

That first week after surgery was really ok! I felt strong, albeit in pain, but I felt strong. In fact, I was feeling so well, I was shocked. All the other surgeries I just remember feeling like a dish rag for months thereafter.

Now two weeks have past, I can report that on the bright side, the pain is lessening, and healing very well. I haven't started physical therapy yet (waiting for the insurance company to get it underway), but I am walking pretty well, very minimal pain. And the pain I do have is *not* where it used to be before the surgery. That specific pain is gone. What I feel now is post-surgical pain, which I am expecting will continue healing.

But O. M. G... I am so profoundly exhausted, sometimes I cannot even see straight. I am sleeping a lot. I am not doing much during the days, mostly I'm home morning/noon/night. Good -...no-wonderful friends are doing the driving. Shifra had been telling me for a while that she needed new school shirts (they have to wear any solid color shirt to school, with the school logo/emblem ironed onto it). She doesn't have much free time, she practices ballet three times a week, and is in a special science program after school also. So, yesterday I asked our friend if he had time in his afternoon to take us to the store to pick up school shirts for her and for Azriel.
That went smoothly, everyone got what they needed, and we got home. I made a fresh dinner (not just left-overs with a pot of rice), and wound up having a late night. Actually, the late night was because of all four kids- phone calls with Dov, Ya'akov, and a few organizational calls for them, test studying, and combing for lice (teachers request to all parents).

I am so insanely exhausted today, I honestly don't know how I'm going to get out of bed soon to welcome the kids home and make food. Going out is out of the question.

I had forgotten what this every-cell-in-my-body-is-drained feels like. It's post-surgical. Everything is exhausting. I don't know how long it'll last, but I am just telling myself that I need to listen to my body, rest when I can, and don't push it. I want to help this surgery to be successful. That includes starting physical therapy ASAP. Don't know when I'll be able to drive again, but when that happens, my energy level and recovery start playing on a new ball field... a harder one.

I am supposed to start taking a medicinal food-type supplement now, prescribed by my surgeon. It's for acute arthritis problems. It's powder which dissolves into a glass of water. I'm supposed to take it for 90 days... the possible side-effects are scary (a few of which are possible dizziness or exhaustion!!). I don't like starting new medicinal things, but this is supposed to help the surgery be successful, as well, so I gotta stay with the program.

OK, going to try to get it together- the kids will be busting in the door soon. Azriel has his guitar lesson, Shifra has ballet, and the beat goes on. Tomorrow I have to bring Azriel to get his braces put on...! OK, one day at a time.

Gonna make a cuppa coffee........
I really just want to go back to bed for another few hours. That is what my body wants. Planning on an early night.

Bearing scars, but doing well

One week after surgery!

I'm mostly walking without crutches. It's totally incredible. Comparing this to my two other arthroscopic procedures, in neither of them I was walking this quickly. Yes, it hurts all the time still. I'm only one week after major surgery, after all. But I am feeling strong, and feeling that I am healing every day. *That* is not to be taken for granted! There is still strong pain- surgical pain. The incisions still have the stitches, my muscles and thigh joint are very raw still. But I feel strong, and I can walk on both legs. Today I mastered going up stairs with alternating feet each step (like you do all the time), instead of bringing both feet to one step, then the next, etc. Amazing. Most painful are the incision spots and muscles.

Also the joint is popping out of place a lot. I was warned that that would be the case because there is no labrum (cartilage cup) holding it in the socket. The end result is expected to be that the joint pops out of the socket regularly, but I won't have pain. I can put it back when it pops, it's just kinda oogie to think about. In practice it's not a big deal. That is, if it doesn't hurt. That is what remains to be seen.

I am going back to my surgeon on Thursday (in Tel Aviv) to take out stitches and talk about physical therapy. I am going to push for hydrotherapy- physical therapy in a therapeutic heated pool. It works for me well, I had it after the other arthroscopic procedures.

I sometimes feel that it may have been wiser to skip this procedure and just go for the hip replacement. That is what is suggested for a calcified joint (osteoarthritis), and that is what I had, a completely calcified joint with no cartilage at all. That way I could have avoided yet another surgery. I am not sure why my surgeons thought this was the best thing to do for me, but I guess that after they went into the joint with their instruments, doing a job to save the joint made sense. They are confident that it will get me out of pain. I hope they are right. I just wonder if they were prepared then and there to do a hip replacement (which they weren't- it is a totally different surgery), if they still would have opted for this repair procedure anyway.

I had one very bad experience there with one of the nurses. You'd think that in a private hospital that wouldn't happen, but wow, I am still paying the price for her callousness.

For 18 hours after surgery, I was extremely nauseous, vomiting, and had a migraine- a very bad reaction to having been given straight morphine. That being the case, Robert was in the halls a lot looking for nurses to administer anti-nausea medication. There weren't many nurses around, and he had to ask often because they didn't do it the first time. I was in an awful state. There was one nurse who was particularly cold to us.

She had me pegged as a whining patient with my husband whining for me. (If she only knew me....)

At some point in the afternoon the physical therapist came in to see if he could help me to get up and moving. I was vomiting, I said no, I just can't.

A few hours later he came back with that nurse. It was time to get me out of bed. But I was still nauseous and had a splitting migraine. I told her I just can't. I have a migraine, and I'm vomiting. She said "I haven't seen you vomit all day". BECAUSE YOU HAVENT BEEN AROUND!!!!! It was Robert who kept giving me clean towels to barf into and wipe my face with. Did she really think that it would be fun for me to make up a story of how awful I feel?

I then said that I have the catheter, and I just can't manage it all. I couldn't manage using the bathroom all the time, I felt I still needed the catheter (half day after surgery here...).

She then said "so we'll take it out". And in two seconds she whipped it out. I screamed. She said "what? That is how to take out a catheter". I have news for you- that is NOT how we take out a catheter. I've had a catheter at least 10 times in my life, and never did this happen.

Somehow I managed to get myself up and onto the crutches (the pictures from the previous post), migraine and all. Only then, when she saw that I gotten up and was walking did she have new found respect for me. I told her I have a terrible migraine, and only then did she give me a shot for that. The shot worked, the nausea and headache abated, and I turned a corner at that point. 

Right after that my dear friend Miriam came in to visit me, and we had a lovely visit.

That whole catheter experience left me with a whole other problem, not related to the thigh surgery. Yes, I am going to write this up for the hospital on their "quality questionnaire". It just makes me so upset that these things go on- regularly- in the hospitals, no matter how hoity-toidy and private. I am so sick of it. I have had so many surgeries, there should be something written in the chart that says: 

"this patient is sincere. If she says she isn't feeling well, she *really* isn't. She's been through hell and back, cut her some slack. Believe her. Eight years ago some nurses in Soroka hospital didn't believe that she could possibly be in so much pain, and nobody gave her antibiotics. Those nurses, 8 years ago, said "she's just spoiled, she doesn't need the pain medicine"

(that really happened, btw). 

The next day she almost died. 

Smile at her, it helps her heal faster."

That stuff doesn't go into charts, though. The patients just have to bear the scars.

Home from surgery

It happened!
The surgery went as planned. Up until the minute they took me in, though, we still weren't sure. All the discussions with infectious disease docs about prophylactic antibiotics, my allergies, MRSA, etc, all happened just before the time of surgery. The docs went away for a while to discuss it and call people. The decision was to give me an antibiotic before surgery, but not one I'd ever had before. That, in and of itself, was scary because of my allergies, but that is what was recommended, and I went with it. Thankfully, it worked out fine. :)

It was a three-hour surgery, as I had been told it would be. I went in a 3:45pm, and woke up at 7:45 from anesthesia (it took an hour to wake-up).

The surgery went a little differently than was expected. When they got in and saw my hip joint, the surprise was that it was completely calcified. There was no labrum tear, because there was *no labrum*. It had calcified and turned completely to bone. It was basically bone impinging on bone, no cartilage. It was an advanced case or osteo-arthritis. No wonder I was in so much pain.

So, instead of delicately stitching up the labrum, they had to shave and file bones so that the hip won't be impinged. Eventually I will need a hip replacement (likely on both sides), but my orthopedist said this should buy me more time before that needs to happen.

I woke up from anesthesia without Robert by my side. I think it is the first time he wasn't there when I woke up from a surgery. The staff and nurses didn't let him in until I was more awake. I guess that is their protocol.

The worst part of the entire experience was the awful after-effects I had from the anesthesia. When I woke up, I immediately started throwing up, and it lasted all through the night. The next morning I was still intensely nauseous, and had a migraine. NOT a happy camper. It was really, really awful. Apparently they had given me lots of straight morphine at the end of the surgery so I won't be in too much pain. Problem is, I know that straight morphine isn't good for me. I have had that reaction before to straight morphine. The Fentanyl I used to take is a morphine derivative. That is OK with my system, but straight morphine is bad. Now I know to add that to my list of meds to stay away from. It was about 18 hours before I got relief from the extreme nausea and migraine. Robert stayed by my side in the hospital room the entire time, bless him.

When that ordeal was over, I was finally ready to try out my new wheel. I got out of bed, the first time with a physical therapist, and walked around my hospital room with crutches. That was less than 24 hours after surgery.

first step on the ground after surgery

walking in the room... not even 24 hours after surgery!

Interestingly enough, because the surgery wasn't as delicate as it was meant to have been, ie fixing the labrum tear, the post-op instructions are different than they were with the two other times I had hip arthroscopy, on the left side. (that was a long and kind of crazy sentence! Never could have predicted that one.) I don't have to avoid sitting at a 90° angle. I can also step down with the leg, lightly, already, using the crutches. The other surgeries on my left hip were more delicate, and I was told not to bear any weight for quite a while. So, in a way, because the hip was in worse condition than was expected, the recovery will [hopefully] be a bit easier. Easier, also, on my left leg which doesn't have to bear all the weight now. Gd plans these things very wisely, don't you think?

I go back to Tel Aviv next week to get the stitches out.

Pain killers: over the counter analgesics, and a prescription NSAID. That's it. With Gd's help.

Now I am just sort of passively waiting for the 4-5 day window for post-operative infections. When that passes safely, I'll feel that much freer. I had three doses of antibiotics while in hospital, and that's all, and I'm sure things will be fine. ...and again I say, with Gd's help.

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

It is Thursday now, and I didn't get to post this yet. Just wanted to say that what they say about the third day after surgery being the hardest? Yeh, I had forgotten about that. It HURTS today. So much. Can't move much. It's a problem when a crutch falls, you know? One has to get creative. Other things I leave on the floors. Not very "me" to leave things on the floors!

Anyway, just like I got through the horrible after-effects from the anesthesia and morphine, telling myself that this will pass soon, I will keep telling myself that. The goal- to be out of pain with this leg. This will pass.

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.

Are you as scared as I am?

A year ago July, when I was supposed to have this right hip surgery done and it got canceled at the last second because of my allergic reaction, I wasn't in that much pain. It could have been (may well have been) because I was on the Fentanyl. That being the case, I remember thinking "this isn't hurting so much, tell me why again I am having this surgery done?" Then the other 'I' would say "because you were given medical advice not to let it get too bad, because then the surgery gets more complicated. The hip is in worse shape the more it hurts. Get it fixed when you know there is already a problem, but it's not awful".

Well, that surgery didn't happen, as we know, and I upped the Fentanyl so I wouldn't feel the pain. I did get the allergy testing for antibiotics done shortly thereafter, but [presumably] from those needles I got cellulitis again and another hospitalization. That was early August last summer, I believe. By the time I went back to my [then] orthopedist, and told him the saga of the allergy testing and cellulitis, that together with the higher Fentanyl tipped his scales and he decided he won't operate on me.

Why reiterate this when we already know the story?
It's a roundabout way of saying... now I'm in a *lot* more pain than I was in last year! It hurts all the time, walking or resting, even first thing in the morning after a night's sleep. It's distracting all the time, and I am constantly more tired these days because of being in more pain. It stinks.

I don't have anything to compare it to as far as last year's situation, because I was on Fentanyl. I assume that the joint is more worn down, and in fact my new orthopedist had to decide if there is enough cartilage to do the repair successfully. Thankfully he decided there is, and I have the surgery date for... three weeks from now. October 19th.

We've been so busy with the Jewish holidays, I haven't been able to take care of any of the paperwork or pre-op testing. I'm getting started on that now, but it's still the holiday of Sukkot here and I can't get any appointments accomplished until next week. The week after next is my cousin's much-anticipated wedding, in Tzfat (3 hour drive north), and we'll be gone for that for two days. Then I have the pre-surgical day at the hospital right after the wedding, then a few days later the surgery. Not so much time! That's what I wanted, though. What's that saying... be careful what you wish for?

Oh, and one thing I found out by reading some of my medical papers late last night was that the hospitalization could be up to three nights (in Tel Aviv). I had thought it would be one night. Oy. It makes life so complicated.

The holidays have been great- honestly great. But very, very tiring. I wanted a quick surgery date, and I got one. I'm just plain nervous. There is a lot to organize before the surgery. The main thing is that I need a person who can chauffeur my kids around for six weeks, I spoke to a good friend yesterday and it looks like he'll be able to do it much of the time, but I need a back-up for the times he can't. (Anyone reading this who may fit the bill of being a back-up driver afternoons for my kids, please let me know. You can have use of our car.)

I also need to arrange meals because I'm going to be on crutches and very limited movement for about three weeks at least. I'll have my two younger kids home afternoons, and need to make sure there are salads and foods ready for them for dinners and snacks. They can make things, but when they are hungry, decent food needs to be available. Also I will need someone to come early afternoons to help me make my lunch. On crutches, you can't take something from the fridge, put it on the counter top or in a pot. It's complicated even to make a sandwich. Non-weight bearing pretty much means the hands are occupied with the job of bearing weight on one leg. And, since my "good" leg is not what it used to be, having gone through this surgery twice already, with it's own disease history, I'm going to be limited in mobility in the best of circumstances.

This logistical arranging helps keep my mind off of the fact that surgery is around the corner.
I need to have this leg fixed, and if all goes well I'll be really happy that one major source of pain is reduced, if not eliminated (the orthopedist said that pain will be reduced, he never said eliminated). The question which festers in my mind is "what if it doesn't all go well"? It's so mind-numbingly scary, knowing what I know, and bearing the scars (and pain) of surgery gone awry already.

But, I have to try to improve my quality of life. I went much of the way by going off the Fentanyl. This surgery is the next goal. Please Gd, let it be the right thing at the right time, with the best possible result.

Are you as scared as I am?

Hospital-a-thon... never a dull moment.

OK, I have officially spent too much time in Soroka hospital, and too much time with medical stuff in general. I'd like a change of scenery. Or a pay check... one or the other.

Yesterday I wracked up eight hours on my invisible time card at that place. All of those hours, except for sporadic times in between, were spent walking around. Any sitting which happened was in hard, uncomfortable chairs, and limited time periods. Needless to say, my leg is acutely hurting, and I am tremendously exhausted. Did I mention that yesterday was a day of fasting for the Jews (it wasn't Yom Kippur- it was a "minor" fast day- the fast of Gedaliah), so I was fasting the whole time, too?

About three hours at Soroka were with my friend who I try to see as close to daily as possible, and the other five or so were in the ER with my lively and adorable son, Ya'akov (15), who managed to break two fingers flying off his bike yesterday. Never a dull moment around here, no sirree!

I arrived home from the hospital after visiting with my friend, and after 10 minutes of being home I got a phone call from someone who I don't know, telling me that he was with my son, who had a bad fall off his bike, and I needed to come. First I asked "which son?" You see, Dov (16.5) had taken a bad fall from his bike the evening before, and I patched up his cuts and scrapes, so this phone call less than 24 hours later caught me off-guard. The man told me where they were, and I came five minutes later; thankfully I was at home when this happened! I arrived there to find five or six adults with him (people had come out of their houses to help), glasses of water, a bowl of Moroccan cookies (Israel!!), and my son shaking, crying, and bleeding. Poor guy.

After hiking hither-thither-and-yon to the different departments of the emergency room, the final result is that he broke two fingers, and got pretty banged up, but he's doing OK, thank Gd.

A few interesting observations about this "adventure" yesterday:

It was the first time since I had NF that nobody in the ER recognised me or knew my history, and that it wasn't about me. It was awesome to feel that I am just another concerned mother taking her son through the ER. My kids have never broken anything (till now), and haven't had any trips to the ER since they were babies, and that was a *long* time ago. It was freeing to be anonymous in that world which is as familiar to me as my own home, strangely enough. Even though my Ya'akov was a mess, I felt oddly light-hearted and, well, anonymous. Usually that is not a good thing, to be an anonymous person in a big hospital emergency room, but in my case, it was a rare blessing.

Second thing is, that it was the first time that *I* handled the bureaucracy and hiking around to different departments. All the times I have been in the emergency room it was *me* who was the one in trouble and Robert dealing with the what, where and who of it all. I was usually being wheeled or carted around wherever Robert directed us. Yesterday I honestly didn't know where the next "stop" is in the emergency room maze- check-in, nurse, doctor, x-ray, back to doctor, orthopedist, back to admission, etc. It was interesting asking for exact directions. Even with directions I messed up with not giving our name to one of the clerks, and had to wait a longer time because of it. I thought the name would magically show up on their computer. Nope. Who knew?

Third thing was the affirming feeling that I can be the person who handles trauma well. It's like when I am a doula for a laboring women- I have no trouble, and don't panic when medical things get hard, heavy pain is involved, or a bloody situation, or a person in shock. I'm right there, not at all squeamish  about, really, anything medical. Even with my own kids. Approaching the scene where Ya'akov had his bad spill off his bike, I saw lots of blood, his bike and broken glasses all over the pavement, and a shaking, shock-stricken kid. The adults around him said to me "don't panic, he's OK, don't get scared" in their own panicky voices... they obviously didn't know who they were dealing with. I was cool as a kitten, taking an inventory of Ya'akov's body, assessing how much blood is coming from where. I was completely not panicking. Just trying to comfort him, and get him to the car to go to the ER. A nice man there put his bike into the car for me.

Gd somehow knew that I'd be the right one for these medical challenges. My own, and recently my friend's difficulty story of three months in the hospital, and many others. I am easily drawn to assist when the most difficult of medical situations presents itself. My own growth, on so many levels, happens in these situations. Got a crisis? I'll help!

So....

About my own upcoming surgery: October 19th is the day.

Speaking with my doctor's secretary, discussing the options as far as available dates, she said "I have to find large spaces in the schedule- it is a big surgery you are having- hip arthroscopy is a major, big surgery". I said "really?" I told her I had it already twice on the left side, and compared to all the other surgeries I went through aside from those, they were fairly quick regarding time in surgery itself, and the recovery was about 6 months until I started to feel actual improvement. She said "I don't know your surgical history, but yes, we consider this a big surgery". I guess it's all relative. I have been seeing large, open abdominal wounds for months now with my friend in the hospital, and my own Gapey in all of it's stages, going from large, deep, gaping wound to healing skin grafts, to the stage it is in now, which is pretty stable, thank Gd. It's all about perspective. But I gotta say, all heroics aside, the secretary did made me a little more nervous about the surgery.

My friend is home from the hospital. I brought her home this afternoon. She is grateful to be at home. We are all a bit nervous about her still tenuous (but improved) situation, but she needed to be home. Too long in hospital. I can relate to that! She lives alone, so it makes us (her friends) nervous, but she has a phone if/when necessary. Her daughter isn't yet coming home. Probably in about a week. One day at a time.

I'm going to sleep... exhausted out of my mind and in acute pain. But I still am, and am constantly moreso, grateful for what I have, and what I am able to give.

Looking forward to Shabbat tomorrow night!!
Shabbat Shalom to all, and to all a good night.

News and thoughts

What a week.
I got the x-rays done, and brought them back to Tel Aviv yesterday (Thursday) to the orthopedist.

He studied the x-rays back and forth clicking here and there quietly with his mouse, keeping me in suspense.

End result: he didn't see what he was hoping not to see, and he said he would operate on me. The amount of cartilage loss/arthritis is not too advanced, so he can do the repair surgery!

Then I asked would it be a matter of months or weeks, and he said "weeks", after the holidays.

Then what happened? Well, after we talked a bit more, and I said "so, I'll see you then, in the operating room..." And he said, yes, see you then.

Then what happened?

I left, and as I was walking to the main road, I got really nervous.
I have been waiting for this surgery for so long, went off pain medicines to make myself a better surgical candidate, went through a zillion doctor's appointments and painful procedures to get imaging of what specifically is going on in my leg, I finally arrived at the right doctor, and I am scared.

I talked with the doctor about this repair surgery as opposed to a total hip replacement (THR), which would be better in the long run for me. I asked if it wouldn't be smarter to go straight to the THR instead of mucking around doing the repair first, having the possibilities of complications, then another one in a few years time for a THR.

He said that there is no indication that I need a THR at this time, and this surgery could hold for many years. He was quite confident that it will alleviate the pain.

So that's it. I'm going to do this, after waiting two years.

I know so much about surgeries, and what can go wrong. *I know*. I'm not only talking NF. All the time I am spending with my friend in the hospital now, ...I just know so much. There is no comparison, at all, between what she is dealing with and the arthroscopic surgery I am going to do. Arthroscopy is an orthopedic procedure like laproscopy is for an abdominal procedure. It's done with small holes and cameras in the body; the incisions remain small. Other surgeries are called "open" surgeries- basically anything not arthroscopic or laproscopic. (the original hernia surgery which lead to NF was an open surgery)

I've had two arthroscopic procedures already, on my left hip. Both successful, no infections following either procedure.

But, as one of our friends has said, "a minor surgery is something someone else is having".

When it's personal, there is no such thing as minor surgery. In my opinion, those two words shouldn't even be in the same sentence.

I'm exhausted.

Thank Gd it's Friday! :)

Each time I went to Tel Aviv this week I did two separate trips within the one trip... the first trip I took my father's violin to a luthier to get fixed up, then to my doctor appointment, and yesterday I went to the doctor appointment first, then afterward I went completely across Tel Aviv, to Bat Yam, to go Dov's yeshiva for a parent's meeting. Taking taxi's, buses, and trains each leg of each trip, I got home last night at 11:45pm. I was also at our local hospital almost every day this week with my friend.

After Shabbat, on Sunday evening, is Rosh Hashana, the Jewish new year.
May all of you be blessed to have a new year full of health, love, family, and Torah.

Sorry my spirits are a little low here, there's lots going on. The holiday will do me good. I look forward to being with family and good friends, and hearing the shofar blasts! It is magical, always.

Medical update, possible bad news

Where do I start? I have been spreading my eggs in so many baskets these days that I am forgetting things I need to take care of for myself.

I showed up to my doctor's appointment today in Tel Aviv with MRA in hand.
He asked for the other x-rays, and my face must have flushed; I actually had forgotten to take care of the other x-rays he ordered. I couldn't believe it, I have never forgotten to carry through with tests. It just completely slipped my mind. I know you are saying "no biggie, happens to all of us". While that is true, the difference here is that I traveled to Tel Aviv for this appointment (arranged kids to get rides to activities, go home with friends, etc), and I am paying out-of-pocket for this doctor. My insurance should reimburse most of it, though.

So, without those particular x-rays, he cannot decide whether or not he can fix my hip. He looked long and hard at the MRA, and told me what that bit was which I read on the evaluation that I didn't understand. Apparently the hip has more problems than "just" a tear in the labrum and impingement. Apparently there is a lack of cartilage, and that cannot be fixed. Cartilage does not grow back, and cannot be repaired. He called it "early onset arthritis". So, when he gets the x-rays he can decide if it is worthwhile for me to undergo surgery or not. They gave me an appointment on Thursday evening, if I can get the x-rays done tomorrow or Thursday morning. I have to trudge back to Tel Aviv.
The fact that the hip is in worse condition than it was a year ago when I was going to do the surgery is depressing. The fact that it may be inoperable is depressing. The only solution, in that case, would be total hip replacement, and he advised against that because I am too young. Honestly, though, I'd rather be young and out of pain than living with this pain for more years, biding my time waiting for a hip replacement to being me better quality of life.

Oh, and the tingling I have in my right foot frequently? He says it's not from the impingement, but rather, indicative of a possible disk problem, or lower back issue. He wants that investigated, too. To be honest, I don't want that investigated. I am aware of too many issues, and I can't deal with another.

He also addressed the issues that I have about my general health. I had thought that, aside from skeletal and nerve pain issues, that I was a pretty healthy person. That I have been through a lot, but am pretty strong on the other side. I told him that I didn't think I was in any higher risk category than the next guy. That what happened to me was a one-in-a-million lottery toss, but I am pretty healthy since then. He disagreed. He pointed out all my allergies to antibiotics (including one of the best- Vancomycin- which is not good to be allergic to. It is the antibiotic of choice for nasty hospital bugs). Hospitalizations, cellulitis multiple times... lymph edema and pressure garments... yeah, that's me, too. But since I went off the pain meds I have been feeling much stronger. Although, of course, in more pain. I told him that honestly I don't know if I can stay off pain meds if this problem is un-fixable.

So, he's waiting to see the x-rays. I hope I can get them done tomorrow or Thursday morning. Then it's back to Tel Aviv, tiring myself out just before a big Shabbat and holiday to prepare for.

Even though the answer is not [yet] "no", I feel really down about this. I feel like damaged goods, and I feel up against a brick wall. That there is no way to help me to have a pain-less life. I have been *counting* on this surgery as one of the reasons I went through the whole withdrawal from the Fentanyl. It was a solution to a problem. If I was to be off pain meds, than I can fix the source of the problem. But early onset arthritis was not part of the plan.

I may have to go for the Cannabis after all. I don't want it. I don't want any drug controlling my body.

On top of this, there are serious issues I have to take care of with my children. I have been spending so much time in the hospital, or doing things for my friend, that I haven't been on top of taking care of my own kids. And today is Azriel's 10th birthday. I missed it. We will celebrate, don't worry.
Ya'akov also needs a lot of things worked out for him, and I have to be on top of that, and I haven't been. I know this means I have to pull back from being with my friend in the hospital so much, but that is going to be hard on her. She is alone. She said today was extremely depressing because nobody came until 9PM. Nobody came or called (except a few messages from me throughout the day). Today was only the second full day that I didn't go in to see her in over a month. I can't keep doing it this way, but I don't want to leave her alone in that place. I'll work out boundaries. Just writing about what my recent stressors are.

So, let's hope I can get these x-rays done very soon, and that whatever decision the doctor makes based on what he sees will be a decision I can cope with. It's all from Gd, I know that, and you know that, but sometimes it's so hard when we have a plan. You'd think I'd have learned that by now.

How long can I remain off pain meds with this pain, if it is unfixable?

I don't know. 

Only time will tell.

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!!

New orthopedist

Yesterday (Thursday) started with a great session of Tai Chi.
From there, instead of getting my lymphatic system drained, because the physical therapy place canceled my appointment, I went to the ICU to be with my friend.

From there I picked up my friend's dog. Her dog had been staying with someone else, and they wanted to switch her to another house. I have taken her dog many times in the past, and she and Emma get along well. She is a very sweet big black dog. So, we now have two dogs for the foreseeable future. I pray my friend will be well soon and can go home to be with her dog, and her daughter. Things are starting to look better, thank Gd, but there is a long way to go still.

After settling her dog into our house, I headed off to tel Aviv for my orthopedist appointment.

I left on the 4pm train and got home at 9:45. LONG day.
But good.

I feel I am in the right hands with this doctor.
Interesting, because he is actually the colleague of the doctor that Rav Fisher recommended for me. Turns out that this colleague is actually a thigh joint specialist. My luck!

I never quite know how I am going to tell my story... it has to be told to new doctors, of course, but I never know how to start. This time it was pretty easy. He started out by asking if I have any allergies to medicines. I rattled off my list. Then he asked me if I take any medications regularly. Told him those, too. That was when he asked why do I take Cymbalta- that is for nerve pain usually. And why am I allergic to so many antibiotics? Enter... Sarah's story. A bit of eyebrow raising, but mostly he was cool and collected and writing down what I said. He's pretty young, but really did seem to know his stuff. When I told him I had PVNS in the left thigh joint, I could almost see him searching his brain file drawers- it is a very rare disease- and then the light dawned on him. Of course, he then asked how it was taken care of, and I told him about my previous orthopedist, and the surgeries I had with him, and why he fired me and didn't want to fix my right thigh. If he was looking for an interesting case to cross his desk yesterday, he got it. :)

He ordered the tests I need to do. I need an MRA- which is like an MRI but with dye injected directly into the joint. It's painful. The "A" stands for arterial. The most recent one I had of that kind was from two years ago. He looked at that, and saw something he thought was questionable, so he ordered a new one. Also a few x-rays, one in "frog" position... that's gonna be fun... not!

I love being at the orthopedist... "does this hurt?"  Yeowww! Ya THINK?

Came home quite sore, but optimistic that I found a doctor who cares, and wants to help, and also has a healthy dose of caution because of my history. The secretary said that as soon as I have dates to do the tests, tell her, and she will schedule me to see both doctors- the main one and his colleague- together. She said that the November date is not relevant anymore, she'll get me in as soon as I have the tests. Hopefully late August or September. I am going to the US for the first two weeks of August, so probably the tests will be after that. I'd be surprised if I can get in for the MRA before my trip, but ya never know. It is a whole procedure, not "just" like an MRI. And the health insurance has to approve it first.

So the wheels of progress are turning.
And so are the wheels of the clock... it's almost Shabbat!

Shabbat Shalom and chodesh tov (new Jewish month) to all!

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.

Jerusalem Day 2015. Music, medicine, and marijuana

Well, that is a nice (half) tikun!

(Tikun is a sort of healing the world, making something better than it was before you came into the world. It is an integral part of Jewish life, and I might even say every one's life.)

Which tikun am I referring to? Well, I wanted to practice horn again today. I took it out, and realized there was nowhere suitable to sit. I used to do most of my practicing in our bomb shelter room- I had carpets up on the walls and such. Then I converted the shelter into my "doula room", where I taught birth preparation classes to couples. For now, I am playing up in my bedroom. But, I couldn't find an appropriate chair to sit in! Which one turns out to be perfect? The plastic folding chair which I use to sit on when I shower. Since I got NF, I am not so steady on my feet in the shower, a combination of the hot water making me a bit light-headed, and having pain, makes me very nervous in the shower. I have used a plastic chair ever since. That same chair is exactly the right size and is comfortable for practicing horn! Interesting... it's a "half" tikun because I do still use it in the shower, but there is a "healthier" use for it now, too! If it's dry, that is....
I am playing long, steady pitches. Lots of them, with my tuning machine so I can retrain accurately. I realized today while playing that this is a real opportunity for me to fix some of the consistent errors I had in my playing before. I never really had the time to sit and practice long tones. Not since college. Now I can do it, and hopefully gain precision in the area I was weak before. It's a way to build up the muscles again, and gain accuracy. It feels great to be with my horn again. When I play, it feels like a long-lost appendage returned to my body.

Gapey is beginning to hurt a bit, though. I now remember from when I played the times I did after NF that it put a lot of pressure on Gapey. When you play a wind instrument, the pressure to push out the air comes from the diaphragm, and pushes against stomach wall muscle. Gapey covers a large amount of the stomach wall, and the muscle was damaged with the NF. I had forgotten that it hurt when I played. Hmmmmmm.... don't know if anything can be done about that.

I did get to see Azriel's class play on Friday. It was so nice! He had lines in the play iteself (about reuniting Jerusalem from Jordan during the six-day war), then after the play they made a special announcement that he would play guitar. He played in front of the whole elementary school "Jerusalem of Gold" on his guitar. He was cool as a cucumber. I was so proud of him! I didn't play solo in front of anyone until I was in 6th grade. He's in 3rd, and has only been playing guitar for 4 months! Next time I have to teach him to take a bow. :)

Azriel in the middle, his principal on the right, his teacher standing
in the middle (behind him), and the music teacher on the left.

Him playing... a friend holding the microphone
by the strings, and his teacher holding his music.

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

Last night I started the weaning process again. I have two doses to go until I am off the Fentanyl. It could be more than two doses, I'll have to see how this goes. I cut out half last night. I have a patch of 12, and I cut it in half. It is a big drop (50%), so I'm going to have to see how it goes. If it is really hard, I'll make the next six go slower.

Why did I start up the weaning again? I made the decision after this past Shabbat (Friday and yesterday) dealing with a lot of pain in the right joint where there is the impingement and torn labrum. I realized that I am going to have to get that fixed at some point. It is very painful, and it's not going away. So, I want to be off all the Fentanyl so I can do the surgery; to go under general anesthesia without having Fentanyl in my system. The main reason my orthopedist decided he will not operate on me is because I have too many drugs in me, and I am a high risk. I don't know which orthopedist will do the surgery, I have to get in touch with our "medical rav" to get a recommendation. Last I heard, though, my orthopedist is the best one around for this specific type of surgery, and he's operated on me twice (arthroscopic hip surgery). I'll be interested to see if our medical rav has someone else to recommend, or if I'll go back to the other one and hope he will operate on me in better health. I am lucky he didn't operate on me last year when it was scheduled.... my body wouldn't have been able to heal well with everything else that was going on.

I have to schedule my MRI for next month. After that, we will know if there is PVNS in that hip or not, and then I can make a proper decision about how to proceed. Did I tell you that the results of the CT were fine? It's good, of course- it rules out (in most probability) hernia, and/or cancer. It doesn't rule out PVNS, however. That can only be seen with an MRI. So after my next MRI I'll know what I need. I gotta schedule that....

I am doing a sleep clinic at the end of this week. My GP ordered it long ago, when the restless leg syndrome started, because I couldn't sleep. That was all together with the weaning, too, so that was also giving me insomnia. Now I am weaning again, and very well may have a hard sleeping week. I talked with the lady at the clinic about that, and she said that they can analyze my sleep as long as I have about three hours deep sleep there. She said the medicines I take have no effect on the clinic evaluation. How I sleep is how I sleep. The question is, I pretty much know that nothing can be done for RLS, so how would an evaluation help? Well, what I do know is that the cannabis drops can help, but I wake up with a headache when I take them, so that isn't an option. I did get in touch with a person today who specializes in medicinal marijuana (thnx Jane), so I hope that through him I'll get a direction to figure out which one is good for me.

Three steps forward, two steps back.
Last week's steps forward were great, though! I still have that one step footage... it's not lost, and never will be. We'll rebuild, one step at a time.

(PS- today, Jerusalem day, in 2007, is when I had my skin graft surgery, two weeks after I had the NF. The description of that morning is here. What happened two days after the skin graft surgery left one of the deepest traumas in me from that time period to date. Here is a very brief descripion that Robert wrote at the time. If I had written it, it'd be much more traumatic. The anniversaries this year seem to be going by with less bravado than previous years. I am grateful for that.)