Chronicles of an NF survivor

...and then there are those nights.

2012-02-24T03:30:00.000+02:00

It's 2:12am, and I am alone. Robert is probably asleep in front of the tv.
I am in pain. Surgery pain, and all sorts of extra nerve pain I didn't count on. I have been waiting from one Lyrica (nerve medicine) to the next, and it isn't enough. I take 900mg a day; it is over the "doctor recommended amount", but maybe not enough for me. The nerve pain is in a strange place, down the outer side of my thigh, seemingly not connected to the surgeries, but nerves can do that.
The caveat is that this nerve pain started before the surgery. This particular feeling, this golf-ball-under-my-thigh-skin feeling, is what prompted Dr.Z to up the Lyrica. He also thought it is a good idea before the surgery anyway.

I have been feeling fluey and have lymph-node pain.
Gapey hurts, and my whole hip feels like a meat grinder must have done the surgery.
I am wondering even, because of the pain, if the mesh in Gapey is holding up still. There are all sorts of lumps and bumps that I don't know what to make of them, except that it is ME. This... is me. All that stuff I wrote about earlier today (yesterday, officially speaking) is also me.

This, though, is the middle-of-the-night, post-surgery, alone, me.

The babysitter had her last night tonight. She baked us chocolate cookies, we ordered pizza.
We knew at the start that this was her last day, she's going into the army soon. Another babysitter (who we know well, thank Gd) is starting on Sunday.
My daughter cried so hard at seeing her go. She really liked her. More than that, though, she wanted her world to stay the same, and it isn't. This is her secondary world- the babysitter world- which she has to rely on because I am out of commission. Now that is up and changing again, and she was painfully hurt and crying tonight about that. I got into bed with her and explained to her that this is all temporary. I will be back in commission. Let's not forget that-- I haven't gone anywhere too bad. I talked her tears away, thank Gd. She fell asleep in my arms. I was in *so* much pain in her bed there in a bad position, when I knew she was a sleep, I tried to free my arm. She woke up foggy and said "can you read me a book?" It was really cute! I kissed her, and let her again take my arms (she, using lots of little redheaded strength!), and let her hold me hard until she fell asleep again. After a few minutes, I couldn't take the pain anymore, I needed to get myself into a decent position for my hip. She woke again, and she asked where am I going. I said just downstairs to say goodbye to [babysitter]. "I won't go anywhere... I am in pajamas, where can I go?"

One more melt down taken care of in the saga of

"the Klein kids handle change while seeing their mother in pain".

(this next section is actually filling in for a previous post... this is what transpired before the "three wishes" conversation-on-the-pillow happened with the same child. When I wrote the previous post, I just hadn't been ready to write about the really hard stuff yet. This is the same kid, and the huge problem that had transpired about an hour before.)

Then there was the one last night from my second son which was much worse; he had overstepped some BIG rules. I was upset at him, but I stayed there the whole time until he could feel his anger dissolve. I told him I love him even though I am upset with his decision to disobey the rules. It was hard for me to stay there with his telling me to go away. "Go away, you don't love me, you just have to say that. I won't talk to you. You make the rules just to control me. I can control myself, so go away...".

I stayed.

I listened to it all, I said that I do love him.

We talked about boundaries and why they are necessary.

(more precisely, I talked, he let me talk.)

I told him that boundaries are love,

and that Hashem gave them to us also,

Shabbat, keeping Kosher, all because He loves us.

I told him the meaning of life is love.

Rules and boundaries help us to love one another.

I broke through to him.

But it was *hard*.

I am not such great emotional shape to deal with that,

but there it was, in my face.

No choice when it is your own kid, you know?

Then comes my turn to break down from the pressure.

And the pain.

And that is what I am telling you about tonight, in the middle of an awful feeling night.

Since Robert isn't up here with me at the moment, I am going through this alone.

With the aid of a small sleeping pill, which I believe is just about ready to relieve me, Baruch Hashem.

Time's heavy voice, and three wishes.

2012-02-23T13:08:00.000+02:00

Are you wondering why I haven't been able to write? I wonder that myself, but I am just taking things one-day-at-a-time. When Robert and I, in some isolated moments, actually look at the big picture, it is just *too big* for us. It is too crazy for us to take in. What has happened here, to me, to us, to our family... it's just too heavy to look at. It's heavy to write about.

I know we will get through this. Of course we will. We are a healthy, loving family, and being together is all that counts.

Robert is awesome. He's a one-of-a-kind. Do you know that he is also stuck in this stuff with me? He has to pick up all the pieces, all of the time (well, maybe not all the time. Thank Gd our guardian angels pick up lots of pieces as well. :-))
I need lots of TLC, and mothering. My mother is very far away, and not is the best health herself. *I* wish I could go there and mother *her* (...them, actually).
Maybe in a few months, we'll see.

Robert has so much to do just to catch up, he isn't able to ever feel ahead of life. He wants things for himself, for his career, and it can't happen. Not now, anyway. I tell him that I look forward to being able to support him through a doctorate. I'd have to be really strong to do that. It means that he'd be gone lots, and studying and writing lots. He wants it very much, and it would be great for him to finally accomplish what he deserves. He'd for sure make more money with it, not to mention feel lots more inner and outer respect.

But time doesn't stop for us, does it. We are all getting older, including the kids, and we feel that life is just passing us by while we are going from surgery to recovery, then another surgery comes. "Wash-rinse-repeat"... seven times.

My 44th birthday is around the corner.
I got sick when I was 39.

OK, you see why the big picture is so hard?

Recovering from this surgery, this time, has so many emotional elements in it, and time going by at a much heavier, deeper pace.

It is hard to write about the mundane details of recovering. You already can figure out that I am doing physiotherapy for the third time, on the same tired muscles. It is going painfully, and slowly. I wonder if I will ever regain all the movement and freedom in my step, but that is not for me to ponder. I just have to keep doing it. And praying.

I spend lots of time in bed still. Probably too much. I am very, very tired. I keep thinking that I need to get myself up and out more, even just for coffee with a friend (thanks, RT- lets *do* it!). The more time I spend in bed, the more time I'll need to spend in bed-- was there something I heard once that when one is sick, for every day he spends in bed, there is a certain amount of time he will have to put in extra for his recovery?... or something like that.
Whatever. It is what it is.

The kids.... well, lets start with the good side: they are healthy and, in my assessment and prayers, deeply happy. Thank Gd.

The bad side? They aren't sleeping enough-- bedtimes are in flux with the babysitter... she's not experienced enough with strict bedtimes. Ten, ten thirty at night they are often still up. Even 11:00 isn't a fluke. Sometimes they are waiting for Abba to come home. They sleep late in the mornings and are late for school regularly. The schools know what is going on in our home, thankfully. They have each taken a day here and there to stay home. They need it; they need to decompress from all the pressure of having me sick.
I am having to deal with quite serious behavior problems sometimes toward the babysitter.
I am getting tantrums from a child who feels completely disorganized in life. Thankfully I was able to take care of that one by spending an hour on the child's bed helping organization happen.

I have recently been able to cuddle in the children's beds with them. Last week I couldn't do that because I needed my special leg pillow and my own bed or I'd be in too much pain. Last night I made rounds, and cuddled in the bed with two children. A few nights ago I made rounds to all *four*-- that was a great feeling.
Being able to get into their beds with them is a big milestone.

Last night my second son asked me, while I was laying on his pillow next to him, if I had three wishes, what would they be?
I said:
1. My parents would be healthy.
2. I would be completely healthy and never need another surgery.
3. That my kids would always and forever be healthy and at peace.

It surprised us both; all I want is health. For everyone I love.
He said I forgot to ask for money!! :)
For him, his wishes would be:
1. Health for grandma and grandpa and me (I told him those may be separate wishes, but I gave it to him)
2. A machine, which would never break down, that makes any amount of real money any time he wants.
3. a million other wishes.

Pretty smart to ask for other wishes! But when I asked him what he'd to with a million wishes, well, he said "really ima? You can't think of using a million wishes? I'd go swimming at the ocean whenever I wanted, I'd travel anywhere I wanted, I eat all the foods I like, all that stuff!"

He's onto something, isn't he! :)

Finally an update! Two+ weeks after surgery

2012-02-17T16:25:00.000+02:00

When one crutch falls, I have to figure out how to get it if nobody is around.

I am tired. There is so much of having to figure out everything.
Everyone needs things, and I need rest, but I can't always rest.
I don't even know what to write about... I am tired a lot, I often don't feel good, and my leg hurts.
I haven't wanted to write... there has been lots of rest/sleep (good), and some emailing, but mostly I have been feeling very passive, reading people's facebook updates, a very passive (but sometimes interesting) thing to do. I am reading real books with my time, too, that has been really nice.

Being on crutches is tiring. The leg hurts, and it has been hard-- I can't bend it more than 90°-- I think Dr Rath put an alarm system in there for whenever I do pass that 90° angle-- it hurts!! So bending down is a problem, but Robert got me this simple, mechanical picker-upperer thing that I can use. It is very cool!
I even need a special seat on the toilet that has a ramp for my left leg so it won't get to that angle. They thought of everything!

I have had lots of visitors, and that has been *great*!! I really love when people come over and sit with me. Maybe that's also why I haven't been writing; every little thing tires me out, and so many real people have been filling my life with goodness!
There have been some real Angels... one comes swooping in frequently and does all our laundry. Another also swoops in and sees to it that I have wonderful, tasty, healthy, fresh food every day. Those two Angels tend to hover at the top of the list. :-)
Another angel has been arranging dinners to be brought to the house daily for the family. This is incredible. Then there are those who are *making* those dinners every evening... too many to mention, but you know who you are, and THANK YOU!!!

There really are miracles and wonders in our world.

Like this surgery-- so much was done with only making three holes in my thigh. *THAT* is amazing. He took out tons of cartilage and scar tissue; everything written on the release form is too long to read, they did so much for the joint. The ball part of the bone was shaved down, and the cup that holds it into the joint was fixed. All with three little holes, three centimeters each. No wound to heal, less chance for infection. The holes are all scabbed over now, and looking less bruised. The skin graft, which was almost black with blood pooling behind it, has cleared up to almost it's regular color already. It is just a miracle, really.

I just hope when all the crutches and physical therapy are done, I can walk without pain!!!!
It's gonna be a long road though-- maybe up to six months before we know.

My first big outing since the surgery was a few days ago, when we went to Tel Aviv for my two-week post-op check-up.
Dr. Rath was very pleased with how the joint is healing.
I was lying on my back, he picked up my leg this way and that, and I yelped, screeched, yelled 'stop!', and he said "good!". I said that all that stuff he did just hurt like crazy, and that is *good*? He said "listen, you are two weeks after surgery, of course it's going to hurt! I wanted to check how the joint is moving, and from my point of view, it is moving great."

He answered all my questions, and it seems like things are going as they should. Baruch Hashem!!

I do have another few stories about that day-- it was pretty crazy with bureaucratic stuff and misinformation that almost sent us back on the highway going back to Be'er Sheva. But, it is almost Shabbat, and I want to get something out, even though it's not my best piece of writing :-). DB- your comment spurred me on to get something out. Love you!!!

I love all of you who are reading and thinking of me and davening for me!!!! It is awesome, really. Sometimes too awesome to write about.

Shabbat Shalom!!

No News is Good News + A Public Thank You

2012-02-14T00:56:00.000+02:00

Nothing much happening, but Sarah asked me to let everyone know she's doing (relatively) fine, and has just been too tired to update the blog.

Also, many, many heartfelt thanks to all the people who have been helping us the past couple of weeks with organizing meals, the actual cooking, cleaning, laundry, ferrying kids, etc., etc. We see all the help as a huge, amazing blessing. Todah Rabah!!!

- Robert

Life, as lived from my bed.

2012-02-09T21:37:00.000+02:00

Some of you may be confused why I took down the last post after I had it up for about eight hours (it had about 30 hits to the site before I took it down). It was a very sad, negative, and self-deprecating piece. It also wasn't totally my voice guiding me. When someone guides my writing, even on a low level, my writing ceases to be mine. My voice changes. I have to be careful of that. That post was changed back into a "draft", and I may pick worthwhile pieces of it for another time.

I am nine days after surgery. I have been spending lots of time in bed. I'd say most of my time has been in bed. Just today, at the inspiration of a good friend (and chef!), I started doing upper body strength exercises, so I won't whither away. I have two hand weights now next to me, and I use them frequently. (thanks, H! Oh, and the ball has already been kidnapped. We saw that one coming, didn't we. And food... all finished and enjoyed thoroughly! :-)

I get out of bed for the bathroom, and I do five minutes of [crutches] pacing around my room a few times a day. Beyond that, I am in bed, changing positions every 15 minutes or so. It is still very raw, and I am weakened by the pain. Dr Rath did a lot in there, it was pretty elaborate surgery. It's gonna take time... months, not weeks, as he told Robert.

The physical therapist came here to the house yesterday. She will keep coming to the house until such time when I can get myself out to go to the physical therapy institute here in Be'er Sheva. She showed me some simple exercises I am to do five times a day each.
They HURT. So much.
So where do we stand now with the "no pain, no gain" wisdom?
When do we know if it is good to keep going through the pain, and when it is time to give it a break?

This surgery, as I think I said before, was to fix damage that occurred only in two and a half years. In 2009 Dr Rath excised the PVNS. When last month he told me I'd need this surgery, I asked him if he saw any of the FAI at my previous surgery, and he said no. I'm not saying that *I* caused the damage with all my swimming and hydrotherapy, but it does raise the question of how much physical therapy through the pain is good, and at what point do you raise and eyebrow and say no, I've done enough so that this should have improved, we need a new approach?

In the meantime, I just did the exercises a few minutes ago because I am at an opportune time now, at the pique of my pain meds. When the patch is new, I get a little "buzz", and my pain is covered better. Good time to go the PT. (I think?)

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

I tried on an entire week's worth of emotions today.

The day started out as I woke up with a sadness and depression, linked to the piece I published onto the blog last last night. I had an underlying feeling that things were not right. I took it off, as I wrote above, and I started to feel better. Then I talked it over with Robert, and I felt even better yet. :-) I am still trying to figure out my book and how to actually *do* it.

There was then the visit from my friend who I mentioned above, and she not only brought the perfect food for me, not only inspired me to exercise my upper body while in bed, but also helped me with some guided imagery for healing. I closed my eyes and joined in the process, and it felt great.

The day improved after that, and actually was completely transformed after reading this very beautiful blog: http://lisajking.blogspot.com/ . It is a crazy depressing story of a family broken apart by death; first of a sick child, then of the husband four months later. So, so crazy. *Why* did I feel better after reading it-- and I spent a lot of time with it-- it just got me out of my little world, joining in their grief. I had a good cry over that story. I was reminded that many people (but *not* everyone) have grief and that there is so much strength in us as humans. How this mother, after she lost her 10 year old child, then her husband four months later, can say that she and her three boys will somehow find the strength to move on with each other. (three boys ages 12, 7, and 3).

People persevere with the most intense hardships. We keep going with the power that Hashem has installed in us to go on, and to connect with the soul of life.

I have to bring this back down to the physical world now, though. I feel that is where I am now, after this amazing day.

At one point this afternoon, my nails were being painted by Shifra, and I was reading to Azriel at the same time. I thought "ah, here I am, being a great mom."
Then the nail polish spilled all over the carpet in my room, and there was a mad dash from Robert to clean it up (he did a great job! It was not easy.)
Things kind of deteriorated after that, although I did get in a few pages of "Charlotte's Web" with Shifra before they were called to dinner.

Now me and my narkie buzz are going to bed. I am hoping on my first outing tomorrow, to see the snow in Be'er Sheva. Not snow that fell on this city, of course, I live in a desert. Apparently they brought snow by the truckloads from the Hermon, and have put it in a big clearing in our mall for the kids to play with and make snowmen. I *really* want to get to that with the kids! We are hoping to go when everyone gets home from school. We will pack the wheelchair into the car and experiment with a [short] car ride with my fragile hip. I have really been yearning to see and feel snow. It's not exactly like being there, of course, but it is as close as it's gonna get to our house any time soon!

Shabbat Shalom!

email to my doctor

2012-02-06T14:33:00.001+02:00

Hi Dr Rath,

The other night I fell with the crutches. The hip went way beyond the 90° angle [which is the maximum angle permitted until further notice]. I tried quickly to move the leg out, but it went into a funky position as I went down.
The pain is the same (not worse), but I felt the 'pop' a few (2x) times which I hadn't since the surgery. I really hope nothing is damaged! Should I do anything? X-ray? Isolation?

I'll print his answer when I get it... oof!

The "Waking Up" Chronicles

2012-02-05T04:32:00.000+02:00

Waking up after surgery this time was different.

I have some very traumatic memories of waking up from surgeries, actually starting *long* before the hernia surgery. The first traumatic waking up was... when I was seven years old, from a tonsillectomy. Yup. I remember it so vividly. Nobody was around, the had nurse just gone out "for a second". I *yelled*. Searing pain went through my throat and neck, but I kept yelling, for my Mommy. I yelled and yelled, for what seemed to me like five whole minutes, but it was probably just a a half of a minute. Finally the nurse came and told me she would immediately bring my Mommy. She did and that is the end of my memory at that point.

Then the next awakening from anesthesia was 32 years later, at the cesarean, when Azriel was born. Going under anesthesia, I was pregnant (duh), with the entire neo-natal resuscitation team ready and waiting for this baby to be born; the prediction was that he'd be sick. His Mommy (me) was sick, and they didn't know yet what I was sick *with*. The baby's heart rate was way high for way too long (he was in a hot tub of amniotic fluid heated by my relentless fever), and preparations were made for the worst case scenario. That is what my last sight was before I went out.

When I woke up, I was in excruciating pain, Robert was next to me (the first time of many, little did we know), and I did not have any information about the baby. The little guy was nowhere to be seen. I looked around for a bassinet next to me, and there wasn't. I got immediately terrified. This was a mere 5 or 10 second time span until panic set in. Robert, noticing I had woken up, told me the baby was fine, and he was born strong (Baruch Hashem!). But the sheer panic of not seeing my baby is a memory I will never forget.

Next was a year and a half later, at my hernia surgery in 2007.
When I woke up, Robert actually wasn't by my side yet, but my surgeon came to me when he noticed I was awake.
He said "the surgery went fine, but there was one small complication, which you don't have to worry about". "While I was in there, I saw a tumor mass which I took out. We call it a Lipoma. It is a fatty mass, nothing to worry about". "I have seen a lot of cancers in my time, and this was not a cancer. This sort of tumor forms when there is a trauma to the area, or an infection which the body is wrapping fat around to protect it from the rest of the body. Can you think of any reason there would be this sort of protective mass in your thigh"? "This one was filled with Lymph nodes. Ever have any infections in that area before?" To which I answered "nope, not that I can think of".

If that information was a little unsettling, what came immediately afterward was that I didn't have feeling down the side and front of my thigh, straight down to my knee (a condition that remains exactly the same today.). This was supposed to be a standard, small hernia surgery. I was *alarmed*. This all happened within two or three minutes from waking up after anesthesia.

Many of the readers here know about the next few awakenings. I have written about them all at one point or another, but I have never categorized them all together like this.

After the hernia surgery, 
I became infected by the Strep A bug, 

which led to Necrotizing Fasciitis.

  Life. Changed on a dime.

I was taken into exploratory surgery after I was in the hospital for three days of unrelenting pain.

In preparation for this surgery (my blood pressure already having dropped dangerously) my hospital gown had to be cut off me because I could hardly move. I do not remember going under with the exploratory surgery, but I remember waking up.

Before I will discuss waking up from a coma, I will refer to a time somewhere between exploratory surgery and finally waking from the extended coma. There was a time in there when I thought I was waking up, and that I was dying. I woke up in a CT tube, but I didn't know that. I saw a white tube, bright light, I couldn't move or feel my body, and I heard non-distinct voices. I thought to myself, this is IT. I cried; I think I felt tears down my face. I only thought of my kids, how they need me. I thought about saying "Sh',ma Yisrael" (which Jews say when they think they are going to imminently die), but I didn't. My kids were in my mind.

Waking up from the coma was traumatic. At first, I had a sort of half-wakening. I became aware of voices all around me. I wanted to talk, but the breathing tube stopped me. Confused, I took my hands to my tube and tried multiple times to take it out. Later I learned that what Robert saw was that I was ever so slightly and slowly moving my hands in the up direction, with no clear destination. Inside my head, though, my hands were violently trying to get that tube out. Isn't that wild?

I woke up more. I could see and think, but there was a tube in my throat and I couldn't talk. Robert was right there at my side, crying. He told me I am OK, that I had an infection, but that I am OK now. I didn't know what time it was... then I found out I needed to know actually what *day* it was. We had come a long way from the exploratory surgery which was my last clear memory.

Then came the next surgery, the skin graft. I was *terrified* to go under. It had been three weeks since I realized I had a huge hole in my gut, and now they wanted to close it up with skin from my other leg.
Before I went under, I actually *stood up* out of my bed to daven (pray) the morning prayers. Standing up, at that point, meant holding all the bandaging and packing that was piled onto my abdomen, with one hand, and my siddur (prayer book) in my other. I *needed* to show Gd that I am worthy of saving. I was going under again after almost dying three weeks beforehand. Nothing about this was OK.

I woke up after the skin graft surgery. My immediate sensory message was PAIN! RIGHT LEG ON FIRE! The "donor leg", where the skin was taken from, felt like it was

{{{{{{ ~b u r n i n g~ }}}}}}

It was hell. But, thank Gd, my loving, steadfast, faithful husband was right at my side. I immediately asked if we are in ICU. No, he said, we are in a normal recovery area. Everything had gone well. Then he went to call a nurse for more morphine (for me, not him. :-))

Next time I went under was for the PVNS surgery in 2009. The waking-up was again traumatic. Robert was there and witness to it all. "Where am I? What happened? Am I OK? What happened? Where am I? ICU? Am I OK? Was the surgery a success?" Over and over. I think after a while Robert started to chuckle, although he tried to hold it in. For some reason, I was stuck in a loop, deep in trauma vortex.

Six weeks later I was wheeled into emergency surgery for an acute appendicitis.

Again, the waking up was the trauma loop, not unlike what had happened last time. Robert started to get used to this. (Getting used to how your spouse wakes up from surgeries. Odd, that.) I, however, was definitely *not* used to this, the trauma feeling fresh and real each and every time. It is was so awful.

Then, a year and a half ago, in 2010, I had the surgery to put a mesh into Gapey to hold in my guts from pushing against the skin graft. The stomach wall muscle had partially been removed at the NF debridement, and was weakened such that a huge hernia had formed against Gapey (the skin graft).

Again, the waking up, a similar scene to the past few times: Trauma loop. "How did it go? Am I OK? Where am I? Is it the ICU? How did it go? Is everything OK? How long was it? What time is it? Am I OK?"... you get the picture. Robert was there, internally (and, as I remember, externally slightly) chuckling. Glad he can take it so lightly. One of us has to!

We finally get to NOW.

I'm too tired to keep writing. Going to sleep. See ya.

Stam!!! ("Just kidding!" In Hebrew)

Actually I am on a roll, and it is quite late at night.

I often get on a writing roll late at night. Problem....

I woke up from this surgery,

the one to fix the cartilage and bone problem in my thigh joint,
(Femoroacetabular Impingement, or FAI,
[I had a combination of both types])

five days ago,

*not* in the trauma loop.

I looked around, saw Robert, and he told me immediately that everything had gone extremely well. He told me the surgery was 2 1/2 hours.
I felt the urgent, intense pain in my hip, and told him so. He asked for more Morphine. I then stepped out of the loop.

I asked to have his hand on my cheek.

He put it there, sort of knuckle and finger side on my cheek.

I said no, I want it the other way,
with his hand open, full palm on my cheek.

He happily obliged. My face felt his solid, full love,
and off I went, into anesthesia blur.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Next I need to write about the hours and days after this surgery.

It was so intense and quite awful for me.
Nobody *ever* can get used to what happens next.

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

For now, I am handling it OK. Still in quite a bit of pain, but it is easily controlled.

I am enjoying quality time with my kids.

Watching "Tinkerbell", in entirety, snuggling with Shifra on Friday was *wonderful*.

It made me feel so optimistic!

I am sleeping a lot, resting well.

Navigating life on crutches after major hip surgery is *really* different than when I sprained my ankle 7 or 8 months ago!

Not easy. But "I get by with a little help from my friends".

And my family. :-)

a central theme, not-so-eloquently put into words

2012-02-03T12:29:00.000+02:00

I got this letter from a good friend who has been following everything since the beginning. These are some of the people who traveled a long distance to come visit me in the hospital when I had NF. These people were actually at our wedding, as well.
She wrote me yesterday as a comment to my blog, and I printed it in the "comments" section of the blog, with my response. But, I decided it is a good theme to print as an entire update, since I am too tired to write about how things are going (hard, painful, crying, hate surgeries, can't take it anymore, you know, standard stuff like that...).

Here is her letter, and my response:

I'm in total awe or shock that this was a problem that could actually be fixed but that it took so long to find this out and all the pain you had to endure in the meantime. and for how long?? It is just mind boggling. Let's hope this is the beginning of a full or as close as you can get to it recovery!

Love to you and all the family,

H.

Yes, H, I know. This problem is been getting worse over the years since my PVNS surgery. The same surgeon did the PVNS surgery and didn't see any impingement problem at that time. I think it started afterward when I so vigorously did all the hydrotherapy, albeit with pain. Nobody ever told me to stop; quite the opposite-- that it is good for me, even though it hurts. The entire two and a half years I have been doing intense hydrotherapy hoping for an improvement in the situation. One hundred times each exercise, pushing myself to the limit. Swimming many, many laps, freestyle, *after* I finished hydrotherapy. If it was just slightly impinged before, I very well may have been making it such a bad case all by myself. I had no guidance, only doctors who told me it's great that I am doing all that in the pool.

My main message is:

"Listen to me when I say something's wrong!!

Take me seriously when I take lots of serious, narcotic pain meds just to get out of bed!

I *know* my body." It has happened time and time again that I wasn't taken seriously,

and I was written off.
after I had hernia surgery, this was said three days before I had total system failure and almost died: "we see no reason for her to be in pain."
one nurse even said "she is just spoiled needing all that pain medicine"
Cellulitis infection: from my [then] GP: "take acamol for the fever, and go to the gyn if you have pain there. No worries".
before the PVNS diagnosis: "it is just residual pain from all you've been through. That little thing on your synovium is nothing. You are fine."
(ps- I *felt* 'that little thing' on my synovium. I felt the tumor in my joint.)
Before this most recent diagnosis (femoralacetabular impingement): "your joint has been through a lot. This is how we can help, with these pain meds,
not much more to say about it."

"We don't always understand pain"...

well guys, trust the people who have it and find out why.

That's what *I* have to say.

By the way... I have already been told by my GP that Trudy (here) is nothing.

It is hurting lots, especially with the crutches I am now on.

Again, I feel a big protrusion in my shoulder. I know it is NOT nothing.

Another fight around the corner...

thank you to Y & H Mb. I love you guys, and your undying support is a warm stream flowing inside me. Sarah

There's no place like home.

2012-02-01T21:15:00.000+02:00

I'm home. One day after surgery, and I'm home. It certainly wasn't in the plan this way, was it?!

I honestly have no strength to write and to think coherently at the moment, just to say that the surgery was very successful, Baruch Hashem. The orthopedist/surgeon (Dr. Rath) said that he went all around the entire hip and saw no PVNS at all. He then fixed the Labrum, which is the cup that holds the ball joint in the hip. It was broken and torn, so that is why the bone was impinged. The ball couldn't stay in the socket because the cup was torn. The cup is made of cartilage, like the nose, for instance. Having that cup broken for so long and having the joint slip out of the socket all the time was like walking on a broken nose with each step. No wonder it hurt!!!

It's all fixed. Thank the Good Lord.
I am going to sleep now, I'm so exhausted.
I have lots more to say, but no strength. Not today.
Maybe tomorrow!

Notes on The Day before.

2012-01-30T01:50:00.000+02:00

I am in "doing" mode. If I think about it too much, I won't be able to do. Thinking would get me stuck.

My paperwork is in order, and my bag is packed. I procrastinated *so much* this evening, I am thoroughly exhausted. Truthfully, I was totally exhausted at 5pm (well, all day actually), but I couldn't rest. There is so much to take care of before a mother can leave her house of four kids. We are training a new babysitter which is *great*. So, I'll have our current babysitter for three weeks, and the new one will take over after she leaves. It is a nice situation, Baruch Hashem. There were so many phone calls today from well-wishers, and there was [trying to] train the new babysitter, and not having dinner made until almost 7, and so much talking. "Ima!" "Ima!" "Ima, Ima, Ima" coming at me from every direction, from every kid, at every minute. They know I'm leaving.

I have a 7:30am train to Tel Aviv tomorrow, then I'm meeting my sister-in-law at the train station so we'll go together to the hospital. I am really glad she'll be able to come with me. Robert will come later in the evening and then sleep over because surgery is in the morning (Tuesday). Robert's brother (otherwise known as my brother-in-law, other half of sister-in-law) is sleeping over with the kids. Then Tuesday night each child will have a sleep-over with a friend, and nobody will be at the house. Robert will actually be staying over two nights, which is awesome for me.

After that, it's babysitters and Robert (home when he's home). He'll come to Tel Aviv I guess on Thursday, possibly to take me home, possibly not, we don't know yet. I may be there until Friday, but if so I am almost positive I'll come home Friday. The surgery is arthroscopic, it is minimally invasive, not usually requiring a long hospitalization. We'll see.

Going to a recovery/rehab facility is up in the air, but I am leaning toward no. It is hard on everyone when I'm not home. Although, I am torn. I feel that I need some quiet time afterward; it's been such a long, arduous road. This will be my seventh surgery in 4 1/2 years. [I wonder if it will always feel so... so... outrageous/shocking/impossible/incredible, (pick your adjective), that this is my life I am writing about. Like... what???].

I want to be taken care of. I want a place that will give me meals and have a nurse or other type of helper be there at the ring of a bell. But, the reality is that my children are still young, and in this phase of life, it can't be all about me. It has been hard on them. It has been hard on Robert. Oh, Lordy, don't get me started down this road.

We'll see what happens.

We'll see what happens.

Robert will update when he can.

I will see you soon.

I have a new desk which I really adore,

so I have to get back to writing soon!!!

B'ezrat Hashem.

love,

Sarah Rachel Bat Tova.

Introducing Trudy

2012-01-27T02:23:00.000+02:00

I woke from a dream last night. I had entered a room in which I knew there were 'bad guys'; their backs were towards me. I had believed that they knew I was coming in innocently. Well, they didn't even let one second pass before they turned around and shot me, bullets penetrating both my shoulders at once.

I woke up startled and scared. Simultaneously I was checking my surroundings to confirm that I was safe, and realizing that my arm was cold and numb, circulation cut off (hence My Maker sending me that dream to wake me up to DO something about it).

Being that I was asleep on my right side, I turned onto my back, urgently shuffling pillows so that my arm would receive blood circulation once again. Thankfully, I soon felt warmth and tingling in the arm, and stayed with my half-asleep senses until I felt the arm completely normal.

This is happening very frequently recently, at all hours. It is a result of my new, hopefully temporary shoulder bone malady, Trudy.

You know how we are always doing strange things, like naming the deformities I have with my body? (Gapey, Scrapey, and Shapey to name the most famous examples.) So, since we have learned what is causing this circulation issue in my arm, and nagging pain on the top of my shoulder bone, we decided it *needed* a name.

Last week when I saw Dr. Z, I took the opportunity to ask him about the strange, hard bump I have on my shoulder. I told him it is quite painful at times, and that my arm circulation gets cut off several times a day. He felt for it, and then said, (and I quote) "what the heck is *that*"?! He ordered an x-ray ASAP.

The x-ray showed a slight protrusion (remember that word when you are trying to figure out why we call the problem by the name "Trudy") in a certain bone in my shoulder... of course, that would be the bone I feel as a lump. It is exactly where my undergarment rests, which creates uncomfortable pressure for Trudy. Hence, it hurts.

We actually decided to send the pictures by email (they are just jpegs) to Dr, Rath because he is also a renowned shoulder expert. How convENient!
He wrote back saying that this is an entirely different issue than my hip (duh), so we must treat it as such, and that I could call his secretary to make an appointment for a consult.

Trudy is born, and will be dealt with *after* I recover from my surgery.
I really don't want to bug Dr. Rath about it; his answer to me felt very final, and that in no way is he interested in stepping out of the role as 'hip guy' for me until I make an appointment for a consult for another issue.
OK, there you have it.

In other not-so-earth-shattering news, my visit with the kidney doctor the other day was pretty good. My kidney function has pretty much remained the same, Baruch Hashem. My liver function, however, is not as great as it was last time. I have a lot of drugs pumping through my system every day, it is a wonder that up until now my liver has showed no signs of deterioration. The solution? Go off the drugs.

We're working on it.

That is the goal here with this surgery, B'ezrat Hashem.

So, having pulled of- quite successfully might I add- a PINK and *very* girly birthday party with 12 nine-year-old screechy girls, that makes us five days until surgery. Four days until I leave for hospitalization (As Azriel pointed out tonight while we were cuddling at bed time).
Tomorrow morning I have to go pick up a prescription, get an E.K.G. done, and make sure I get in contact with the secretary at Ichilov hospital with questions I have about some paperwork.

Then I come home and organize the house and the children to have Shabbat spread it's light over us. Oh, beloved Shabbat, what would I *do* without you? I honestly don't know how I survived much of my life without you.

I will, most likely, post something again before I leave. I'll find something to say. ;-)

Shabbat Shalom from Be'er Sheva, Israel.

the star of the day

the cake of the day

and might I add... Mommy of the day, too. :-)

And then she wept...

2012-01-25T00:48:00.000+02:00

I long to feel that my world is how it should be. I mean, I know it *is* how it should be, but I have this feeling of disquiet... or even perhaps agitation, about my life. About our life, actually-- our life as a family.

On the one hand, I know I am so profoundly blessed. When that feeling comes over me, I am astonished at the depth of my love for my children and my husband. I also love my house (although the four flights of stairs are much more of a challenge than they were when we purchased it). I often feel it is the perfect house for us, and I bless Hashem, from the center of my being, for everything.

But I am unsettled inside. I constantly feel that I am behind in a hundred things at once. We are often late for things... like almost everything. We catch buses and trains at the last minute. We are one of *those* people ( yes, we are one... I meant that.). I help kids with homework, but another kid inevitably needs me, and all-of-a-sudden, I am not enough.

Agitated. Impinged. (to use my hip analysis)

One week till d-day.

Then the recovery, which is a wild card as to how long that will be. It doesn't look like I'll go to the rehabilitation center, unless, for whatever reason, I'll be in the hospital more than six days; then the insurance will pay for it. We could pay to go privately, that is actually an option. We are going to just see how it goes and how I feel after a few days.

I have a nanny. Not the one I interviewed last week, but a regular babysitter of ours who committed to us that she can be here daily, for three weeks (except for a few days here and there which she told us of already). That is a relief. I also have a warm recommendation for another woman who I haven't met yet. I plan on calling her tomorrow.

Things are more-or-less in place. I still have a prescription to fill, an E.K.G to do, and a nine-year-old's birthday party to pull off on Thursday (that'd be Shifra. Her birthday was on Chanukah... as I said, we are habitually late...)

All of this agitation stuff, unsettled feelings, and even the lateness: all of it can be pushed aside with Emunah. Faith that everything is for a good reason. And with that faith, getting to places on time is more important. It is about respecting others time. It is about respecting ourselves, isn't it.

I experienced an *amazing* example today of such deep emunah, from an encounter with someone else. it was actually her emunah that I was privy to.

She was our babysitter when Dov and Ya'akov were babies. We lived in our first apartment, and she was unmarried and in her early twenties. As time went on, she got married and moved to another town. She had children, and moved back to Be'er Sheva, where we met occasionally out and about. We always talked eagerly when we saw each other... how are the children, how are we personally. She is a special person; always kept up with my health situation each time we met.

She now has a daughter in Shifra's class.
Anyway, we met today on the sidewalk picking up children from the class Azriel takes called "robot-kid". (they construct robots, it's really cute!)

I told her about my upcoming surgery, and to my surprise, she wept. I was taken aback, I am not used to spontaneous displays of deep-seated compassion. She told me that I am such a special woman, I don't deserve this. She cried for my hardships. Can you believe that? We see each other at most once every three months or so, and she is crying for me.

Then she gave me a bracha that all these tears that are falling from her should be counted by Hashem, one-by-one, for my complete recovery and freedom from pain.

Now *that's* emunah.

I am going to see "The Rebbitzen" tomorrow if I am feeling up to it. She is always good for an infusion of faith and simplicity.

I could use some of that right about now!

Sunday afternoon Hip-hop

2012-01-22T16:51:00.000+02:00

Shifra came home today from her "hip-hop" dance class, and she went straight to the computer to find the song they were dancing to. SHe found it, put the volume up, and started showing me her moves.

I danced along.

Of course, my hip doesn't hop like hers, but I improvised.

Three more songs and we were still dancing and having a blast.

It's not all gloom and doom, really!

I slept nineteen hours straight.

2012-01-19T23:29:00.000+02:00

The pressure has finally gotten to me. The toll has been taken.
I've come to a grinding stop from all the running around I have been doing.
I have been doing the work of a whole, healthy person, and it is breaking me.

It started with a complete and total emotional breakdown at the ultrasound clinic yesterday. The paperwork for my ultrasound wasn't correct, and the attempts to call my health clinic resulted in twice getting disconnected by the automatic menu system. I finally got through and had the proper paperwork faxed, and it turned out that it wasn't the proper paperwork-- it was for a CT, not an ultrasound. (I need the ultrasound of the kidneys for the nephrologist next week). Then I broke. B R O K E.

Huge loud sobs, regardless of the fact that this was a place that one usually wants to be just a normal citizen. I called Robert and sobbed on the phone to him. What came out, over and over, was "I can't take it anymore".

In the meantime, the secretary, apparently feeling sorry for me, called the health clinic and got the proper papers faxed. I was just about to tell her to forget about it, set up another appointment, when lo-and-behold, she had my forms in her hand.

I went through the ultrasound, puffy-eyed and trying hard not to cry again.
I always hate the part where I have to be on my left side, directly on the hip bone, on the hard table, with my legs straight-- it is *THE* absolute worst position I could be in for my hip. That is the position they can most easily see the kidneys.

Well, with that over, I still couldn't go home. I had to go to another place; a place which helps people with disabilities get their benefits. I am in the middle of trying to get us more money from the government for after surgery, so we can pay hired help for longer periods of time. I had to go there with more papers to shuffle. I had to wait about a half hour for the director to call me in.

With that done, I had to rush home in time to interview a woman interested in the job of being our nanny after surgery. I had to put on a happy face and talk when all I wanted to do was go to bed. I wound up sharing my story with her, totally honest and open. I was supposed to be finding out about who *she* is for the job, and she just seemed so open, I just walked right in. I think I was trying to justify why I am looking for help. I mean, you walk into my house, see me, and everything looks just wonderful! I have turned into a person who likes to tell my story. I pour it out, and feel justified to feel what I feel about my life when I see the shock on people's faces.
She is lovely and I hope she'll come back for a day of "training". I am waiting to hear from her. I hope I didn't scare her away with all the intensity of my life, and of our needs as a family.

When the babysitter for the day finally came, and I could finally go to sleep. I was planning on going to my shuir (Torah class) at that time, but I used the babysitting time instead to sleep. It was the only thing I really needed.

I slept from about 5pm to..... NOON the next day (today).
Yeah, it was all getting to me and took it's toll.

Today I stayed in bed ALL DAY. I am still in pajamas.
I feel slightly sick, like flu-ey, but no fever. I just feel very run-down and have no energy for anything. Robert took care of the kids this afternoon and evening.
I have increased pain in my thigh, both inside the joint and nerve pain going down the outside of my thigh.
Dr Z increased my Lyrica.

Hospital in 11 days.

It's looking like I may not be going to a rehab facility after surgery. The ones covered by insurance require a minimum of a six day hospital stay, and this hospitalization is not going to be more than four days, probably.
To go to a private facility is way out of our budget.
So, I'll come home to my family. Everyone will be happy to have me home.

But I am scared. What am I scared of?
surgery. waking up. pain. (you'd think I am used to it by now, but I don't think one EVER gets used to pain.).
I am also scared of the recovery.
scared that I won't have healthy food. I *need* healthy food.
scared of never getting better.

I saw my results for the blood and urine tests I did last week.
There were some red marks on them, like things were too low or too high. Hemoglobin low, protein low, magnesium quite high (what does that mean? Well, I just put into Google "high Magnesium", and got this. Kidney problems...). I haven't been eating so well as of late... a few months of not having energy to cook and prepare on a daily basis. Then the nose swab came back (needed for hospital stays, checking for traces of MRSA), and it is positive also. I don't know if I'll need antibiotics.

11 days. Today, that feels very scary.

I *know* that this surgery is supposed to fix my hip, but I am having a hard time believing it. It was such good news at first, and then it turned into this thing that I don't believe will help much. I have to go in believing it will help. I don't really know which one is true, so I might as well take the more positive one.

I think it's just the word "Surgery" that makes me go into a depression, never mind that it is for fixing something that needs fixing.

I'm sure you all understand that.

Plans for healing, or healing plans

2012-01-16T00:01:00.000+02:00

Approaching another surgery, I am feeling like a body without a soul.
The doctors only see the body part they are responsible for fixing.

The danger is when I forget to see my soul, also.

For the surgery, as well as for the appointment with the kidney doctor next week, I need an obscene amount of tests.

All I am doing is going to DOCTORS!

I need quiet time before this surgery. The time leading up to the 30th is *packed* with doctors appointments and tests, if not for me than for the kids.

I need to hammer out time for myself, and it has to be away from the house.
It is nearly impossible to get it before the surgery (I go in on the 30th),
so I am thinking about taking it afterward.

There are post-op rehabilitation centers which are subsidized by cupat cholim (Israeli medical system).
I need "free rest". I need meals brought to me at regular intervals during the day, and a doctor/nurse on-call 24/7 to take care of me. I don't yet know for how long.
I feel guilty for wanting this.

The hospital stay itself is only for about two days, and I know how coming home afterward can be wonderful and stressful at the same time.

I am working on getting a nanny, we don't have one yet.
I need the kids, cooking, and laundry taken care of.

I can't do this!!!

I have had so many surgeries-- Me, Sarah Klein. The one who didn't plan on any of this.
I am pounding the keys on the computer!!! Can you hear how stressful this is?

All these surgeries, all these medical issues, all the appointments with doctors who only see you for the part they are responsible for.

I am not strong enough to handle all this, I want to run away.

I would come back for the surgery, though... I need the doctor to fix my leg.

Asking "why?", even though I know not to.

2012-01-13T00:54:00.001+02:00

While doing my hydrotherapy exercises at the pool the other day, I realized that the fact that it hurts has a new meaning to me now. I have been doing these exercises for two and a half years now. The logic behind it was that it hurts because it needs to be worked on more. If I only did the right exercises enough, it may stop hurting finally.

That mentality may be true for physical therapy directly after surgery, for rehabilitation, but two and a half years later is no longer logical, you know? When I was released from PT and hydrotherapy two years ago, a few months after my PVNS surgery, I was told that there is no more that they can do. It still hurts me, they knew, so I should keep up the exercises at home as much as possible. I understood that to mean that there is a hope the pain will go away if I do these physical therapies enough.

I did the hydrotherapy in the pool all this time with the pain. "Of course there is pain", I think to myself, "my hip needs this, it will help the pain". My thought process usually ended with my destiny in life is to have hip pain. I kept doing the hydrotherapy for "maintenance". It didn't occur to me that I have been doing the same thing for a long time now with no positive change, only for the worse. I would never dream that all that exercising could have been damaging.

My pain meds have been slowly creeping up. Pain was increasing.
Nobody thought to ask "why"? My famous doctor at Ichilov could only tell me that he isn't sure that all that pain is from my joint, when I TOLD him I know it is.

Listen to the patient!!
OK, they finally passed my file onto Dr Rath, to their credit. They couldn't figure me out, maybe he could. But it took two years of doing the same thing before they did.

It never occurred to me, or anyone, that I may be damaging the hip. I always proudly told my doctors that I am a swimmer ("don't worry, I take care of my hip!").
Not until the other day, that is. Now I know that it hurts because it is damaged; the bones are impinging upon each other, and all these exercises are, in fact, NOT GOOD for it.

A hundred frog kicks while holding onto the pool wall, a hundred one-leg-up-and-down movements in water with a weight, thigh-twisting exercises and then sometimes up to 20 laps, and the hip bones were grinding and impinging with each count; with each kick.
Two and a half years of working it. Nobody told me not to. Quite the opposite.

Nobody could answer the question of why my pain meds were increasing.

The MRI's were ordered without contrast. Dr. Rath said it needs to be with contrast in order to see the real damage, or to see if there is actually any PVNS in the joint. Why weren't the MRI's preformed without contrast? The damage may have been caught earlier.

Doing the exam on my hip was enough for him to see exactly what is going on; any other damage he'll see and fix after he gets in there.

In one completely random day, this doctor finally told me why my hip hurts.

Is he REALLY going to fix it?

Loose emotions, on the run.

2012-01-10T02:04:00.001+02:00

Getting news from the doctor *other than* what I had been used to hearing for years now:

"we know you are in pain... we don't understand pain... we're not sure your pain is all from the joint (even though I said it most certainly is), there isn't much we can do for you..."

"Double Bursitis. Lots of physical therapy, cortisone shots".

This new syndrome, the tremendous confidence Dr. Rath had telling me about it; it all really excited me. I couldn't believe that someone is offering a whole new perspective, and a promising treatment! There is a name for this disease, and there is a cure! Woo-hoo!

I wasn't even ten feet out of the familiar ward (where I have spend many, many days and nights), when I called Robert with the exciting news. He was at the time on the phone with our good friend, so he put me on speaker so that friend could hear, too.

I was so excited!! I said "great news!!" Robert was completely caught up in the excitement with me. "He said that I have this disease which I can't pronounce, and the he can fix it!!!" "OK, It means more surgery, but then I have a chance at the pain going away, and no more pain medicines!!!"
We were giddy with the possibility, the new chance. Our friend on the other phone was right there with us. It was just good vibes everywhere.

Hard to believe that was just yesterday. Wow, just yesterday I was happy with the news of brand new hope, possibility. Just *yesterday*.

Today I went into a depression.

The roller coaster.
I want to embrace it as all part of the process, but in my prayers? I pray for only middle ground, with a few ups, and a few dips.
The roller coaster is back.
I put on my seat belt. I invite you to, also.

I am so scared. Am I crazy to agree to go under the knife again????
Seventh time in four and a half years?!
I looked back at a blog, specifically looking for time periods when I knew surgery was close.

The year was 2009. The post that caught me was written on the eve of going in for the PVNS surgery; the one which ultimately didn't happen.
I was scared of dying, and wrote good-bye brachot to my family.

Please re-read it here? ...for me.

I want to bring you into my heart so you can start carrying me through my fears.

I *know* how much hip surgery hurts. I've been through it before. This time, it'll be both hips at once. Filing down bone, removing damaged tissue, repairing torn cartilage.
New mantra: getting off Fentanyl... getting off Fentanyl...

I want my Mommy. I want to hop on a plane and feel safe curled up in her bed with her.

MM- when you said you wish we lived closer, I yearned for that, too. You are my dear friend, and you are a beautiful, talented mother. Want a job for a week here with us?

I want to go to one of those healing-type hotels where there is a doctor if you need one. They have spas, and only healthy, beautiful food. I'd stay there for a week after surgery. Anyone know of such a place?
Who will take care of my kids?
(Robert mentioned calling an agency for a nanny for a month. We'll plan on that.)

My daughter has her hopes and dreams set on me being able to bike ride with her. She *loves* to ride, but can't ride alone yet. She's nine, and we live in a city. Her brothers aren't interested in hanging out with her much, and Aba works so much. She asked me if I'll be able to ride a bike with her. I said I really really hope so.

My youngest son... he's six. He asked me if this surgery means

that I can finally have another baby.

Robert and I looked at each other...

Poignant. P a i n f u l.

I'll set my sights on bike riding.

Medical Update: the Three Week countdown.

2012-01-08T23:41:00.000+02:00

My head is spinning, aching, overflowing with today's brand-new reality. My brand new reality.

Our brand new reality.

I'm really gonna need you all. You have no idea how much you mean to me. "My" readers... I count on you to carry me and encourage me to keep the faith.

I'll get right to trying to write an account of what happened today when I was in Tel Aviv seeing Dr. Rath. (Previously spelled "Rot". I know, the name-- you just have to keep remembering that it is actually "Roth", but he spells it this way in English. Just get it out of your systems. :-))

I've been up since 5am. I'm desperate for sleep, but I first have to write this out of me.

So in case you don't remember, Dr. Rath is the one who was called in to assist on my PVNS surgery when the doctor from the orthopedic oncology department at Ichilov discovered that he couldn't do the surgery on the day It was scheduled (and I was already hospitalized and ready for the surgery, then abruptly sent home.). I'll refresh your memories here.

So, I hadn't seen him since the actual surgery. It was nice to reunite three years later. He is considered now the number one hip specialist in Israel, especially known for his success with arthroscopic procedures like the kind I had with the PVNS excision.

He took my most recent MRI to look at. He looked, he consulted with another doctor, he looked some more, all the while with me waiting in the waiting room, listening to the secretary do her very busy job. Finally they called me in.

A few questions, where is my pain, when does it mostly happen, what helps, etc. I talked. All the gory details.
Came time to do the physical exam. Left thigh first. Lying on my back Dr Rath pushed, pulled, twisted, pressed on spots all over my thigh. It was AWFUL. He was hurting me so much I almost cried. Everything he did while asking "does this hurt? How 'bout this? Oh, sorry, just what about this? Mm Hmm, Now do this please"... you get the picture. OMG I haven't felt such concentrated, deep, searing pain in a long time. Just when the torture ended, he wanted to test the right thigh. Same thing, and although it did hurt, it was MUCH less than the left side.

We sat down to talk after this all.
Turns out that he is so impressed that I could be a textbook case for a brand new (to me) disease.

Yes, you read correctly, I have a new disease in my thigh joints. Both of them.
More letters to add to my CV of diseases I've survived.

Femoral Acetabular Impingement, or FAI.

Just pop it into Google and you'll get lots of articles about it.

Here is an explanation, and here is a video, not for the weak of heart (J.O.- if there's one thing you're not, that'd be weak of heart ;}).

Dr. Rath said lots of things about this all to me. I can't write it all at once, it'll come out slowly over the next few weeks. One thing which has HUGE implications for my father is that this is a genetic disposition. My father has been suffering terribly for about a year with hip pain. Any of you who saw him at Dov's BarMitzvah in November saw how difficult it is for him to walk. I called them as soon as I could with this diagnosis, and now my father will discuss it with his orthopedist. My grandmother on his side also needed a hip replacement. This all means that I may have gotten it anyway, not having anything to do with the NF, or even the PVNS. The whole genetic thing can explain why the right side is joining the party. However, the case with my left thigh is MUCH worse. It's in quite bad shape. That *is* partly due to the scar tissue from the NF, growing into the joint, pushing the bone, displacing it much more than it may have been without that issue. He also says there may well be PVNS lurking inside the joint which we can't see. Why couldn't we see if there was more PVNS with the MRI? Because the MRI wasn't done with contrast dye. My other doctor did not order it with the contrast dye.

Where are we going with this?

Back. Into. The. Operating room.

On January 30th, 2012.

In just about three weeks.

Am I scared? Yes.
It'll most likely be fixing both sides at once.

In the end, though, the hope and prayer is that I will be able to get off the Fentanyl and have a better quality of life.

B'ezrat Hashem.

More on this soon. I have to go to sleep now, I'm so entirely wiped out. Maxed out.
We'll get through this.
Together. You, me, Robert, the kids, and Gd. Not necessarily in that order.

Curious George meets the gym...

2012-01-05T16:26:00.001+02:00

There was one point a few years ago when I felt that I was getting very physically strong. It was after my PVNS excision surgery, and I was following a strict regimen of physiotherapy, hydrotherapy, and I was also going to a personal trainer a few times a week doing general strength training. This is the link to that post. It was almost exactly two years ago.

When the PT and hydrotherapy ended, I didn't do anything to replace them. I was supposed to continue on my own with the PT myself, but I didn't. Then, when the personal trainer I was working with stopped working because she was about to have a baby, I bought a few "props" I'd need for the exercises she taught me. Needless to say, I don't think I used them even one time.

I took to swimming again a year and a half ago. That has been going great. I have been able, mostly, to stick to a schedule of twice a week. There have been lapses of a month a few times, but I got back to it. I have been swimming at a lovely gym right here near my neighborhood, with deep gratitude going to my parents for the gift of membership there. I had always looked at the equipment longingly; I wanted to do other strength training, also. Something kept me from doing it, though. I think I had to feel strong enough to start strength training. Odd, right? I felt safe with the swimming.

I honestly don't know why, but recently I decided that it's time to start the strength training.
I need to be strong, even if I am going to have health issues, right? The gym offers a personal trainer for free a few times a year. Last year I didn't use it. This year I decided to take advantage of the offer. I met with the personal trainer a few days ago- Tuesday (the same day that I saw Dr Z and raised the dose of the Fentanyl patch, actually).

The trainer listened while I explained the issues of my left hip. I also explained that I am pretty weak all around because of all the time spent un-well. He got it. He helped plan for me a work-out routine, and taught me about all the machines and which muscles they are for. He wrote it all on a card for me, so I can refer to it each time I go to work-out.

Enthusiastically, I went back today. The plan was to do the work-out with the strength training machines. I want to do twice a week there; once swimming, and once strength training.

Well, yeah, you guessed it. I overdid it. I am in such pain now. It didn't hurt while I was doing it, but now, a few hours thereafter, I am very sore. I went beyond what he planned for me to do. I tried a few of the other machines as well. Now I see that he didn't do those machines with me because it causes strain to the hip.
I was like Curious George in there... trying everything, feeling like I can do anything, then getting in trouble.

What was going through my mind was "I'm really OK. Nothing hurts at the moment. Most people who have gone through rare and complicated diseases (?!) aren't even well enough to get to a gym, no less do all this stuff I can do. What do I need all the doctors for, I'm really so OK!".

Never mind the fact that I was feeling OK because of the higher dose of the Fentanyl! That didn't occur to me. When I am feeling well, I honestly have this amnesia thing. It's like I suddenly see this medical stuff as some other altered reality, not *me*. I act as if I have no restrictions, and it's almost like I think of "all that other stuff" as a farce. That *this* now is the real me.

It's GOOD that I am going to the gym and starting to train in ways other than swimming. I have to remember, though, that if I feel well, and am having no strong sense of pain, it's because of the medicine, it's not ME-- there is no unmedicated me any more. Unmedicated me would probably be in bed all day.

I gotta take it easy. Medicated me has to take it easy.
Now that I think about it, it's likely that unmedicated me (in days of yore) also should have taken it easier. I was so hard on myself. Can you tell?

Still learning lessons about what my body can and cannot do. I just pray that this pain I've caused will go away quickly. I'm resting for the remainder of the evening.
This could last a while.
My hip is pretty mad at me at the moment.

Raising the patch

2012-01-04T21:20:00.000+02:00

Just like a vessel on a long voyage needs to refuel, my body, on it's journey, needs more pain medicine. Specifically, Fentanyl. For a few months now my pain level has been creeping up. It happens so slowly that I don't realize it. I don't have a fuel meter with an indicator light on my dashboard.
Eventually, though, my brain does flip on the light of realization: low on pain medicine.

That happened today in Dr. Z's office. Now I once again am reminded how nice it is to have less pain! It doesn't take long for the higher dose to kick in. I put on the new patch at around 3pm, and later that night (this evening) I started noticing that I had less pain. It's actually the *absence* of pain which catches me by surprise more than the pain itself does. Interesting.

The dosage went from 37.5mmg (micromilligrams) up to 50mmg. This also means that I get to go from two patches to one, which I like as well. The skin under the patch often itches, so having only one patch to deal with is nicer.

I am enjoying the relief of less pain. I realize that it's far from ideal to need higher doses of strong medicines (Fentanyl is stronger than Morphine), but as the shrink said a while ago, "none of this is ideal". If that's the case, than I'd rather be out of pain.

Out of curiosity, Robert was interested to know how much Fentanyl our friend who passed away from cancer last year was taking. We went onto her blog. She had breast cancer metastasis, all over her body, and in her bones. Pain was a big problem.
As it turns out, she was taking 50mmg also. I had thought it was much higher.

It was a poignant point of reference.

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

The other medical update for me today is that I got a call from Prof Meller's office that my next consult has been scheduled. It is with Dr. Rot (the Israeli way of spelling and saying the name "Roth") who was on the team of surgeons who did my PVNS excision surgery. It is scheduled for this coming Sunday morning at 8:30am... in Tel Aviv!!! That means I will have to leave here at 6:30am. They couldn't make it later, and, if I didn't accept the date, it would be another few months before I got to see him. Once these appointments with the famous doctors are scheduled, there isn't much room to move around.

When they say "jump", "how high" is the general idea. However, my mind sasses back to me "if I could jump, I wouldn't need this appointment, would I."

Balance.

2012-01-01T15:50:00.000+02:00

"The logical thing to do", says my psychiatrist, "is to go back up on the Lamictal, to the dose you were on when things were more balanced emotionally".
I cried the whole 45 minutes I was in her office.

The most important thing is to regain emotional balance. Without that, nothing can happen.
I have been spending so much time brooding and crying, scrapping with my husband, and being short with the children. It is so clear to me that I can't go on this way. It isn't "me". The "me" I got to know post- nf has lots more patience and tolerance for my loved ones, and saves brooding and mourning for my blog.

OK, then, that's what we'll do; slowly go up on the Lamictal to my original dose.

I need to go back on the Lamictal-- I was a pretty good prototype of "Sarah: post-nf" when I was on it. My main problems were the physical pain and trying to solve that. The emotional side of things had been OK. It's a pity we tampered with it. It was awful trying to wean off of it. Now, going back on it includes the side effect of fatigue. Just what was missing in my life.

Speaking of tired, I want to write about a few things that my kids have said in a joking manner that have actually really hurt me.
In making caricatures of everyone in the family (most of them really funny), my oldest son said in a girly sort of voice and hands fluttering about: "I'm Ima, I need to go rest, I need a babysitter to help me, I'm too tired". Ouch.
Then yesterday my second son comes out with "Abba works hard and makes the money and you sleep all the time, too lazy to work". OK, I *know* this seems AWFUL to you readers who aren't familiar with the joking banter that goes on with me & the kids. We are always joking with each other. It's always done in a certain type of voice that we know we are joking. I call them "fatso" if they want me to lie in bed with them and I need them to move over. We joke around *A LOT*. That's a good thing. I think, though, that they don't understand which things cannot be joked about. I privately cried about these "jokes" from my kids. I told Robert about it. I hope he'll find some time to talk to them about it.

Just this morning Robert was telling me about some serious financial problems we are having.
I got depressed that I am not working and pulling in a good salary. I am getting 100% disability, and that pays the mortgage every month, but we are in significant minus. It is **hard** for me that I can't work. A few people recently have been asking me why I don't play [horn, in orchestras] any more. I tell them that I really don't want to. Partly that is true, but deep down, I wish I could have the pain-free stamina to practice and play again. I wish I was up to the difficult scheduling they have at the orchestra I used to play with. I did it for 12 years, through all four pregnancies & nursing and everything. I miss it; the good parts of it. I like to play symphonies, and I am pretty good at it. Hashem blessed me with that. But my horn now sits in the corner of my room, untouched.
I also wish I was up to doing births on a regular basis. That used to give me so much gratification and *fullness*.
I'm 43, I'm supposed to be in the working world.

But, I'm not.
I do mourn that. I lost so much when I got NF.

Hashem never lets us fall all the way down, though. He showed me that I can write.

Welcome to my book. Walk with me, I can't do this alone.

off balance

2011-12-29T03:00:00.000+02:00

MRI report: inflammatory Bursitis in both hips. The left joint, my "bad" joint, has fluid on it as well.

There is no evidence of tumor re-growth in comparison with the last MRI.

Please don't write that you are so happy to see the *good* news. I always feel like that negates my feelings about the bad news.

I am having a hard time recently. With LIFE, not just this MRI. I get so may medical reports with all kinds of results, I am getting inured to the whole experience.

Seeing the glass half full instead of half empty is where I'm stuck. It's an emotional thing, not so much physical.

The truth is that for the past 6 weeks or so, I have been having generally a hard time. Painting Shifra's room was *great*... I think it was the greatest accomplishment in this time period. Except for maybe going to see the writing mentor (S.D.).
Other than that, I have been under a cloud, and behaving like I am a pressure cooker about to blow.
Noise is also bothering me, like when I was at the height of my post-traumatic stress disease.

My medications are off. It is clear to me & to Robert, but not clear what to do about it. I am seeing the shrink in the morning (Thursday) and I'll hopefully have a clearer picture of how I may get help.

I am in more pain, too. The Fentanyl & Lyrica, my main pain meds, aren't covering me.

In the aftermath of necrotizing fasciitis and PVNS, a balanced life seems so unattainable.
When balance depends on medicines, can it *ever* really be attained?

A survivor begins at the end.

2011-12-26T02:22:00.002+02:00

S.D. was looking at my latest blog entry; the one about initiating contact to go meet her. That entry seemed to have it all. "Let's just start here", she said.
"I am clearly making a new beginning", I think to myself, so let's go with that. That blog entry actually reads very nicely like a beginning of a book..

Then I thought how wonderfully poetic and perfect for me, to start from the end. I mean, if I am feeling ready to write the book, and traveling to have professional guidance, then let's just draw a line in the sand and call all that other stuff "behind me".

In the beginning I often ruminated about how will it ever be behind me; how will I ever be able to go on. I've had two serious and rare diseases, within one year of each other. It is the human condition to need to draw lines, right? To need to say "now I am moving on".

Today, actually, looked like such an amazing "moving on" day, nobody would ever believe that I had NF, or PVNS, or that I am taking heavy narcotics in order to function. It looked like that because I...

Goodbye light green walls I painted while pregnant with Shifra, hello periwinkle bluish-purple! See those waves painted on the wall in the green behind me? They had little yellow ducks floating on them. It was a lovely nursery. But my little girl just turned 9! She wants a more sophisticated room. I completely understand her.

...painted Shifra's room! I was up (high!) on ladders, I was bending and stretching to paint around the huge closet, I pushed myself to the limit today. I [painfully] crouched to tape up baseboards and windowsills. With the help of Shifra and Ya'akov, we finished it in one day!! (Oh, and I won't leave out Robert's help-- taking down the ceiling fan by himself, including a slight electrocution-- and generally taking care of business in the house while I painted. The kids have Chanukah vacation let's not forget). I amazed myself, really. It was HARD.

Actually I have lots of experience painting rooms in this house... almost all the bedrooms were painted by me, usually when I was pregnant. I like to paint. I hadn't done it, though, since I got sick 4 years ago. Today showed me that I am back; that with these pain meds, I can do this once again.
Not only that, but the traveling that I did on Thursday and Friday (to see friends and then go to the meeting) wiped me out only for Friday evening. By Shabbat day I was almost fine. I was very tired, but I got out of bed and got to shul, hosted a family for lunch, and then took a nap. It was quite normal, actually.

So in a way, it is a good idea of S.D's to start at the end. Actually, those are my superimposed ideas. She only suggested to start there. With that entry. *I* am choosing to call it "the end". It doesn't have to be that way, though. Can a beginning be a beginning if there wasn't an end before it? Sounds like birth, doesn't it. :-)

Truth is, in my mind, there has been no real end. My medical issues are strongly in my daily life. For example, at this point in time, a few big things are going on. At almost *every* point in time, I have medical issues going on. I have to go pick up the results from my MRI. They are ready, I just haven't had time to go get them, and the secretaries are not permitted to fax them. I am anxious to know already. I also have to start the process for all the tests for my kidney doctor appointment coming up. I am still a patient, and most likely always will be.

Honestly, if I were going to try to explore why saying "it's behind me" feels so threatening, I'd have to say that it has something to do with feeling that I am a victim. The 'margin of human error' fell on me, and I paid the price with my body and my soul. I don't ever want that forgotten.

It's survivor mentality. I am nothing if not a survivor.

The water wheel and The Mentor

2011-12-21T01:56:00.000+02:00

Until I picked up the phone, I wasn't sure what I'd say. I honestly thought I was going to back out. I have no confidence in my ability to follow through on anything because of my health.

I am still not sure if I can follow through, or to what extent, but I decided that I am going to start the wheel in motion.

That idea of setting the wheel in motion makes my brain have an image of one of those giant water wheels-- the wooden sort-- getting set into motion with that first bucket of water... loudly creaking. The water wheel generates energy when it is working properly. It's a positive image.

I made a meeting with a literary mentor to help me get my book going.

The book has been stuck... stuck in it's creator... for a long time. I need to write it-- I need to get my story out.

I met this mentor last year when I attended the literary conference. We talked for quite a while (long past the ten minutes she allotted for the meeting), and we had a really great chemistry. She said that she'd love to work with me, and that I should be in touch.

Then I dropped the ball, and never picked it up.
Until last week. I wrote her an email after my therapy session last week.
In the session I was talking about the careers I've had in my life (and to some extent still have), and that what I really want is to write my book. I feel that my career these days is taking care of my health issues. I certainly wouldn't call it satisfying. Between that and mothering, I don't have much left for anything else.
But what can I do? I really want to write my book.

I wrote to this mentor (we'll call her S.D.), and I re-introduced myself. I wasn't sure if she would remember me after so long, so I wrote some details as well. Turns out she definitely remembered me, and was happy to hear from me.

HI Sarah, I remember everything about our meeting. You didn't need to refresh my mind but I thank you for your re-intro anyway. I'd be happy to work with you. I really enjoyed our meeting and would love to help you bring your thoughts and writing into the world as your published book. It would be my pleasure.

Nice, right?
She gave me her phone number, and said to call to make an appointment.
I dropped the ball again. I waited a whole week before I called. Yesterday when I picked up the phone, it wasn't actually to make an appointment. I thought I was going to apologize and postpone... again. When we started talking, though, I remembered how comfortable I felt with her, and my thoughts surprised me by turning completely around and making a day to meet with her, at her home in Jerusalem. This Friday. I am **very much** looking forward to it! When I have a structure for my writing I will have the freedom I need to write. Isn't it interesting how structure gives freedom? It's that way with religion, also. In knowing what to expect, and what is expected of us by Our Creator, the freedom lies in the security of the "known", as opposed to the unknown, which is what we get without structure. My book writing has no space in my life at the moment. I'm not talking about time. I'm talking about space in reference to following a set of laws. That is what makes space for the things in our lives, the fact that there are rules. Without the rules, creativity can cease to exist.

The publisher said they want a table of contents, and a few chapters. That is the goal.

On being awake

2011-12-18T01:13:00.000+02:00

There's a new medicine on the scene.
You know I love adding new medicines to the fold. It just makes life so.... so..... Interesting.

This one has been needed for a while, but I've been afraid of it. It's been on my shelf for about a month, patiently waiting for me. Yesterday I opened it for the first time.
Turns out it delivers what it promised to deliver... alert wakefulness.

Ritalin. Yes, the drug that people, young and old, take for ADHD. It is an "upper", which seems counter-intuitive if it is supposed to help people with attention and hyperactivity problems. Well, I read about it, it is explained simply here:

Ritalin is a prescription drug that is sometimes given to people with Attention Deficit Hyperactivity Disorder (ADHD). People with ADHD might have difficulty concentrating and might be unable to stay still for any length of time. So if Ritalin is a drug that might improve the concentration and attention-span of people with ADHD, how could it be an upper? It might not seem to make a whole lot of sense.
The chemical balance in the brain of someone with ADHD will be different from someone who does not have ADHD. Research suggests that people with ADHD have low levels of a chemical called dopamine, which can motivate people and increase joy. So in simple terms, Ritalin can help increase the dopamine levels for people with ADHD. If someone has regular levels of dopamine already, then Ritalin will increase those levels even more, and can make someone “high”, or bring them “up”. (taken from here)

Dr. Z gives this to his patients who suffer from sleeping too much as a result of the pain medicines. I decided that, although I believe that sleeping can be healing, too much of it, in my case, is devitalizing. I just wish I knew what constitutes "too much".

I guess I am going to have to play a bit with it and see what feedback my body gives me.
I always have more pain when I don't get enough sleep. That is an unwelcome and counterproductive sort of feedback, but it's there. I'll just try to be smart with it; use it when it seems logical. I'd like to achieve the goal of reclaiming my mornings. I'll start with that.
That would actually be *amazing*.

Looking forward to my hour & a half massage in the morning..... great way to start a new week!

Happy Chanukah!!!!!!!!

The story, the whole story.

2011-12-13T16:24:00.000+02:00

After I help a woman have her baby, we usually have a sit-together (often with baby) and talk about how the birth went. She hears it from my side; I fill in the story for her, and she fills in the story for me. I look forward to this meeting. It is so important to re-hash the story with the other participant. It's like a debriefing of sorts. That goes for any story that was highly emotionally charged. People need to talk about it, to share it, go over it, to be together with it.

Putting that notion aside for the moment, I want to say that the surgeon, the one from the NF, had been such a huge character in my story. For the whole four years, pretty much, he remained in that effected part of my emotions (yes, that word was done purposely unevenly to reflect how it is with me).

When I was hospitalized this past October (here), I saw him around a few times on the ward. Then the next week when I had to go back for the endoscopic procedure, I spoke with him a bit. Nothing deep, just about kids and sneakers. Chit-chat.

I thought that the "casual thing" from that hospitalization helped make him small in my mind. I was sure it did. I was even relieved. "It's done", I told myself, he's back to being just an acquaintance.

A long, long time ago, we even *did* have a sort of hashing out meeting of sorts. (I will now take the time to find that blog entry.... here! It was Sept 16th, 2008.), That meeting was more me getting it out to him about how I perceived he messed up my life. That meeting came a week or so after writing The Letter... which I wrote Sept. 7, 2008. (the very important writing out what NF has done to me & my family).

But you know what? Am I crazy here? I feel, at the same time that I considered him no longer to be a big character for me, that I need another meeting. I never heard what the story was like from his side. I want the completion of my story; I want the other side, like I do with my after-birth mothers. What was all this for him? I especially want to know what went through his mind during the CT, when he saw the massive damage that was happening, still uncontrolled. During the surgery, when I was dying? Was he scared? Were there other surgeons there, too, or was he operating alone? What was being said at the time, if he remembers?
[I remember lots and lots of voices, and loud noises, constantly. Every time I heard the talking, I was terrified that what I was hearing were the voices of people *during my surgery*, which would mean that my anesthesia was not heavy enough-- a terrifying thought. In fact, I was in the induced coma, hearing what was going on around me in the ICU. But not knowing I was safe, paralyzed but hearing people talking, it was a constant state of terror.
I don't know... why am I writing about this now? Why is this relevant?
I am working through it all. Getting ready to organize my book and write... my story.]

This may seem a bit odd for some of you with no background on the story before NF. You may be thinking "what's the deal here with the surgeon/patient contact?" Well, our two families were friends before this story. His family used to be in our neighborhood, and we got to know each other and be friends. We even got together for a day trip to go up Masada. It was a lovely day. That is where this comes from. He told me that he learned to never operate on friends again. It's a bit like selling your car to a friend; if something went seriously wrong after he trusted you, it'd weigh on your conscience heavily, right?

I'd like to know; *is* it weighing on his conscience, or is it behind him?

I want to move forward with my book, but I can't. I have no outline, no order to the book.
I want the WHOLE story.
I wrote a prologue, and part of chapter one. I can't figure out what is chapter two? How do I proceed? Today I wrote a letter to a literary mentor who I met at the writer's convention I went to last year. I want to meet with her, to get help.
The publisher who offered me the contract is still interested; they are waiting for my work, whenever I am ready.

I am getting ready. With the help of Gd.

"Sissy" is so out of there. Read the comments. :-)

2011-12-13T02:23:00.002+02:00

Wow, lots of comments from that last post. I love it so much! Keep them coming. You have no idea how this all helps me... It takes me out of isolation. My thoughts turn into real conversations with real people, and the problems take on a much more manageable persona.

I encourage you to go back to the last post and read through the comments.
At the very least, you'll be introduced to some very special people in my life.

Update:
Plumbing: Flowing once again, thanks to Peglax. I just have to remember to keep taking a dose every few days. It isn't a laxative, actually, contrary to the name. It is very clever in that it is a powder which you put into a drink of any sort, and it causes the drink to not be absorbed through the intestinal tract. It goes straight through to the intestines, making whatever is in it's path... soft. You drink a few doses, everything gets very soft, and that resolves the problem. I can deal with this for the next while. At least it isn't a harsh laxative, or worse, and it isn't another medicine.
Incidentally, a friend suggested a medicine which was created for the specific purpose of correcting constipation in people who are taking opiates ("Relistor"). This is a known problem. I looked into that medicine, and at first it looked fantastic; perfect for me. Then I saw that it isn't for people with kidney problems. That takes me out of the running. I didn't even get to the point of talking with my doctor about it. I'll stick with the Peglax.

Sleeping: I plan on trying the "upper" pill if I want to be moving on a "down" day. I have to try it to stop being scared of it. It may be a good thing, right? I won't know unless I try. I'll let you know.

(right kidney hurting quite a bit today. Robert's theory is that it is the pressure from the intestines. I hope that is all it is).

Tomorrow: I see my two "healthy soul" doctors. The psychiatrist, and the psychologist. I have to give the update t the psychiatrist about the Lamictal weaning success (or near success). We need to talk meds. That should be fun. With my psychologist I talk from the heart about these things I grapple with; actually about everything. It's good.

Going to sleep....

Dealing with adversity, or fighting it? (or: am I a sissy?)

2011-12-12T00:40:00.001+02:00

"Is this it"? I keep asking myself.
What I mean is, is this regimen of medicines and pain control IT?
I have what, 40 or 50 more years to live of this life, right?
Am I *really* going to be on heavy medications and narcotics, with ever increasing dosages, for all that time? I just can't picture it. I'd love to talk with someone who has spent 40 years on Fentanyl.

But that person would be impossible to come by. Why? Because this medicine, first of all, is pretty new. It hasn't been around for 40 years. The patch form that I use, and which is mostly commonly used for cancer patients (שלא נדע), was developed in the mid 1990's.
This is from Wikipedia:

Fentanyl was first synthesized by Paul Janssen under the label of his relatively newly formed Janssen Pharmaceutica in 1959. In the 1960s, fentanyl was introduced as an intravenous anesthetic under the trade name of Sublimaze. In the mid-1990s, Janssen Pharmaceutica developed and introduced into clinical trials the Duragesic patch...

So I'd be hard-pressed to find someone with 40 years experience with this drug in any form.

Why am I getting into this? Why would I question a good thing? After all, I am out of pain (mostly).

Well, like I've talked about in so much of my blog writing, everything has it's cost. It's one of the reasons I believe in natural childbirth; the medicines can make things much worse in the long run... and in the short run. There are so many complications that can happen once we introduce medicines into a birth. Nothing comes without a price.

Well, I am paying the price. And I am examining again whether or not the benefit is worth it. I mean, yes, I was in a LOT of pain, and having that taken away is a HUGE THING. It's not like in childbirth that I know that the pain is very temporary, and that I know a Big Reward is waiting for me very soon. This is not temporary, and there is no big reward.
Or is there?

The prices I am paying now are:
Sleeping a tremendous amount. I can easily sleep 12 or 14 hours at a time. I sleep away opportunities, I sleep away my children's precious waking hours.

The second price is that my intestines are on vacation. They aren't doing their job. There is a serious traffic jam, and they aren't doing anything to clear the path, if ya know what I mean.
It isn't a joke, really-- we all need *every part* of our bodies working. If one part goes on strike, we got trouble.

About the sleeping issue, Dr Z gave me ~another medicine~. It's basically an "upper", and I can take it any time I need to get out of bed and get moving. I filled the prescription, but I haven't used it yet. Another drug. I haven't been able to take that step. I don't know if I will. I probably will.

About the traffic jam, well, I am doing everything in my power. Slowly things get moving. Very slowly. Very uncomfortably.

I also have my kidney disease to worry about, and eventually also the liver would protest all these medicines.

As far as Dr Z is concerned, I am being treated as a cancer patient. I get my medicines for free. He gives me the same advice he gives his hospice and cancer patients. Lyrica, Fentanyl patches, Ritalin (the "upper" I just mentioned) for being awake and fighting the fatigue that comes along with them. I am actually an oncology patient, being treated by one of the country's top oncologists-- orthopedic, Prof Meller. I have a tumor disease in my thigh which is not cancerous, thank Gd, but it is oncological.

I don't *want* to be treated like a hospice patient. I have lots of living to do. These drugs take away my pain, but drag me down. Without them, however, the pain itself was dragging me down.
I want to be one of these miracle stories where the person, against all odds, trained her body out of hurting. Here is one story which I just read. Makes me feel like a sissy.

I *am that strong*. I think that I can do that.
But my dilemma is... maybe I'm not actually that strong.
Maybe by being who I am, not actively working, being home with my kids, taking pain meds, *IS* what Hashem wants for me. I always said that one of the amazing things to come out of these years of illness is that I am not spending my time working. I am raising my children, the holiest job of all-- even [slightly] holier than helping babies be born. If I were to go off pain meds, I wouldn't be available for them because of the myriad of issues that comes from going off meds, and being off meds.

It could be that it's time to raise my children with the value of being strong, being healthy, fighting adversity. I mean getting off pain meds and working on being healthy and strong despite the pain is an amazing thing to show my children.
Prof Meller suggested I go off them all so we can test my leg to see *if* all the pain is all coming from that joint. (there is lots of damage all around the joint, and scar tissue from the NF all in the same neighborhood. He thinks that is more to blame for the pain than the PVNS is. I, on the other hand, know what I am feeling.) If the joint is the source of the pain, then he'd consider some sort of partial replacement surgery to try to help. That would hurt lots, and can't bring promises with it. I don't really see much gain there.

No, I am not going off the meds. I am not crazy.
I just wish I could.
I wish there was something I could look forward to-- some procedure or treatment-- that would change my medical situation and fix things.

I just did an MRI. No results yet... soon we will see if there is anything visible that all this medicine is covering up.

Thank you for being my sounding board. I needed to think this through.

Healing

2011-12-07T18:09:00.000+02:00

Roller coaster down... sleep days enter.

Sunday & Monday I was up early and to bed late. I exercised and did errands. I cooked and cleaned.

Tuesday- I felt sickly and fevery all day. I slept late into the morning, and then went to sleep again at 5pm! That is, 5pm for all night.
Today, Wednesday, I woke in the morning to see Dov off to a camping trip with his class. They are going up north, coming back Thursday.
I stayed up for a little while this morning, then felt dizzy and light-headed. I went back to bed bed.
I slept straight through until 2:45. Lucky, because I had to get Shifra at 3:15! I hadn't set an alarm, Hashem woke me at the right time.

I don't know how much sleep that is, but it is *a lot*.
I am still tired, but I actually only have two kids home with me this evening, so I decided to take them out to dinner so I won't have to cook & clean up.

That is where we are headed now... to a little place that has great food. :-)

One of my favorite babysitters said to me: sleep is healing.

Sleep is healing.

I am healing. My body metabolizes lots of medicines every day, and I am healing.
Tomorrow is my MRI.

I am being good to myself.

contradictions attract... so I am in balance, actually!

2011-12-05T10:20:00.000+02:00

In re-reading my last blog post, I ralized that I wrote about this past Shabbat, that I didn't have a nap. It was phrased in a way that said that was one of the "manic" sort of things going on.

But, about a month ago, I wrote how disappointed I was that I took a long nap on Shabbat and missed out on spending time with my guests.

Interestingly enough, these were the same guests. So, for the record, I am happy I didn't sleep this time through the aftrnoon ahours that we all hung out together. :-)

It seems like it was a contradiction. I guess feeling one way is valid, then feeling the other way is also valid, right? Even if they contradict. (MM-- winking at you...)

My life isn't "manic"... I don't think. I don't want a label, and then some change in meds. I did make the appointment with the shrink I don't like so much; she has been the one for three years now, so she is it, unless I want to change. Which I might.
Point is that I want to stay for a bit on the low-dose Lamictal I am on, and see what happens in a longer run... like 4 or 5 months. I want to stay on the drug regimen I am on now-- I think it'll be OK for me, B'ezrat Hashem.

I got up early with the children this morning (no choice- Robert stays at work overnight Sundays). That went well.... and I had a nice walk with Emma. Now, 10:15, I am going to the gym. First time in aaaay-ges.

Hip pain at a slightly higher level because of getting less sleep. That always happens. Hopefully the pool will help.

bye!

Manic musings

2011-12-04T00:11:00.000+02:00

December 1st:

Sometimes writing is *exactly* the medicine I need to get out of the narrow straits of depression. Everything got so much better since I wrote!!

It starts with the complete relief of getting it *out*. Not just out, though, but out in the specific way I need it. I need to know that people will read it. They (you) are listening. That, for me, begins the healing.

Then, friends and family who are reading sometimes reach out and call. *That* is an amazing thing. Honestly, how did people in "the olden days" communicate with each other on any regular basis? Do you know how blessed we are?! I do. Actually I am not such a chat-on-the-phone person. No time, the kids need me. No patience for chit-chat. But there are those calls, every now & then, that can change everything.

This one went like this:
My friend said "how about take a half hour once (or twice) a week to write, and a half hour once (or twice) a week to exercise, and then it's not so big. You don't have to do everything every day". Then later in the conversation "maybe you could wake up early with the kids once a week instead of always, it doesn't have to be all or nothing".

I can do that. That is the plan now. (I hope. Truth is that ever since I had NF, there have been no regular days. No regularity at all in my life. Four years. Saying "that is the plan now" is scary.)

I woke up this morning with Dovie, I surprised him. I made a difficult decision to force myself out of bed. I got to sleep at midnight last night, and six-and-a-half hours for me isn't nearly enough, but I did it. He was happy to see his fleece-robe-and-slippered ima coming down the stairs. He gave me a big hug. Oh my goodness that child is so special. The lovin' was flowin'.

I made him a thick, manly sandwich for school and sent him on his way with a blessing from me, ...even though... he goes out in the COLD with no JACKET! Makes me crazy. He's like his Dad- doesn't feel the cold.

Then Robert woke, and the other three children came stumbling down the stairs after.

I braided Shifra's hair. It's something we both love, and which we almost never get the luxury to do, because I am not up in the mornings. It is one of the special intimacies we share as mommy-daughter.

December 3rd, Saturday evening, after Shabbat:
Well, the day went on, and I never rested.
I went shopping with Shifra, then back home and I made the challot and pizza for Thursday dinner. It has actually been a long time since I did all the [preparing/baking] steps of challot and pizza myself; usually Robert does some because I am too wiped out, or we order pizza and buy challot.
I did it all and I was buzzin' around. Remember I was up at 6:30? Did the morning? Went out shopping with Shifra? Oh, I did laundry, too, of course. Then, I went out to a concert in the evening.

My friends and family on facebook thought I shouldn't go to the concert. I wrote that I was planning on going after this busy day I had, and one friend said said "No!!!! Don't go to the concert.... stay home - rest, so you don't burn yourself out. That way, you can maybe get up tomorrow morning again! Your battery is very very precious..."

Well, that friend was theoretically right. But I went. I actually only saw the note after the concert. Not sure how it would or would not have effected me.
This is what I wrote in the facebook conversation afterward: "I went to the concert, I really felt good, and Shifra also wanted to go. It was a low-scale thing in a private home, very enjoyable for both of us. I am awake now, 11:35, after just cleaning the kitchen (R dropped onto the couch exhausted). I am noticing that I have a manic thing to try to understand and straighten out. Either I sleep all the time and depression is at the steering wheel, or can't sleep and I do a million things. Today I have been up since 6:30, and haven't napped. I am going to talk to my doctor about it, but I do *NOT* want to tweak any drugs. I think I can definitely call this manic behavior at the steering wheel, you know?"

I continue to look at the past few days as quite manic.

Friday morning I woke in a haze of unpleasant dreams. The dreams in the early morning were borderline nightmares; dreams I would definitely call PTSD dreams. I did have to get up to go to Dr Z, and I was able to disobey my dream which was trying to convince "awake Sarah" of much worse things.

I did a ZILLION things Friday. By the time I lit candles for Shabbat, I completely fell into my bed. I could have stayed there all night, but Shifra encouraged me to get up and come to Kiddush.

Today, Shabbat, was full of walking to & from shul and hosting a bunch of people. Also, I didn't rest at all today until now, night time.

I still have a sort of manic feeling.

Bottom line is that I do see an instability emotionally recently that I didn't have before I went down to low-dose Lamictal. The Lamictal was originally for the PTSD as a mood stabilizer. Maybe I still need a higher dose? And if so, is it OK to take? This whole thing of going off was because I am on a high dose of Lyrica, but if it's not so good for me to be off the Lamictal, then...?

I will talk to the psychiatrist about it. I just don't like her so much. I only see her three times a year or so. I don't much like her, and and I don't want to test any other new drugs. But it's time to report back to her; it's been-what, about three months since this whole Lamictal drama started?

Shame of it is that I finally feel we got the dosages and timing right for the pain. It is now at a manageable low.
It's either the mind drugs or the body drugs. Synchronicity has yet to happen.

(appointment with GP tomorrow-- I haven't checked in with her in months. I also need a throat culture-- sore throat now for a really long time-- 3 weeks? Then on Thursday I have my bi-yearly MRI. That is a big deal. We get to see what is happening in the joint after masking all this pain. I take the results to a specialist that Prof Meller wants me to see again-- the one who assisted in my PVNS surgery. Should make more interesting blog updates! ;-)

This post is like the yin/yang... the pain, and the joy.

2011-11-30T14:02:00.001+02:00

I know it's been a while. I have thought about writing, but honestly I have been just too tired. I am now, too, but I am going to try to write. I just got back into bed-- noon-- after getting up and having a bit of breakfast, and my bed is still warm. I've been spending a lot of time in it.

I don't have logical explanations about all this sleeping. It just IS. I don't have a great relationship with "that which IS" at the moment, though. I am depressed that I sleep so much. They call it fatigue. I call it sleeping life away. My mornings don't exist, I am sleeping. My evenings partially exist. I am usually up with the kids for dinner (I do usually cook a good, homemade, healthy dinner) and after, until bedtime.

Then I have a hard time falling asleep, even with the sleeping pill. Sometimes I could be up until 3 or 4, believe it or not. I think maybe I should start taking a sleeping pill regularly at a designated time, so I can start to try to regulate my sleep. It doesn't seem to help, though. Last night I took a sleeping pill because I felt so lousy (physically-- fighting a throat thing and a cold for a week), at 8pm. I slept straight through until 8am, then drifted around light-sleep dreams until 10 or so. I had wanted to get up with Dov at 6:20. I told him I'd try, he said he would like that. I can't do it. If I *do* manage to force my dizzy/tired body out of bed early, I feel sick by evening time, and the kids don't really have me for then.

I am falling asleep here at the keyboard. 12:15pm.

That's why I don't write much anymore. It is just too damn depressing.
...here come the tears...
A few weeks ago I wrote about an awful day that I had regarding the wean off Lamictal. I am referring to this post.

Well, that particular day was hell.
I had what felt like a psychotic breakdown. I can't write all the details. I didn't have enough Lamictal in my system, and whatever it was that the Lamictal was stomping down, came up for air. Call it PTSD, but whatever you want to call it, it was deep, dark, and bad. It was triggered by a friend who was angry at me. I couldn't digest that anger like a regular person would be able to. It wasn't terrible anger, just your run-of-the-mill built-up anger from a friend to a friend. These things get worked out and pass in good friendships, like this particular one is.

(but I still haven't digested it all, not alone nor with the friend,

and still am very emotional about it, crying when I think about it).

But that day, with the Lamictal at an all time low of 5mg (down from 150mg, mind you), I broke at the appearance of this friend's anger. It was a day that, before this phone call, I had been dealing with nausea, throwing-up, and hallucinations from the withdrawal. I later apologized to her for having my breakdown "on her".

The break was horrendous. I couldn't write about it then. Only yesterday, at my psychologist's (Lily, my once-every-two-weeks visit) office did it all come up again.

The next day after the psychotic break, as I am calling it, I went to a specialist; a psychiatrist who specializes in psych meds. He simply told me that: if it is awful on this low dose of Lamictal, than go to a higher dose. He explained to me that not everyone can go off medicines just-like-that. What about the contraindication with the Lyrica? Well, he said, on a low dose of the Lamictal, it isn't so bad. Is it *ideal*? No. "But", he said, "is any of this ideal?" Any other drugs he thought of to switch-to would have been, he said, much more toxic for me.

So I am now on a low dose of Lamictal-- 25mg. I am mostly stable, thank Gd.

But, I am more tired, and I am more depressed. That very well be because of going down so drastically on Lamictal. I haven't been depressed like this in a long time, you know? I'll make an appointment with my regular psychiatrist. It's just that I don't like her so much, but she is the drug decision-maker.

None of this is ideal.

My perfect day:

get up at 6:30 with the kids, see them all off.

exercise, either at my gym (swim) or by taking a walk, until 10am.

come home, eat, write my book until kids come home.

be with kids through bedtime (or if I need a babysitter to go out, or to write more, do that)

then go to bed, sleep without a pill, by 11pm.

I have had days close to that, but before I went off the Lamictal.

~My pain is, I'd say, 75% under control. The Fentanyl patches are at the right dose, thank Gd.
~The new cream seems to be the right one for Gapey's perma-rash... it is getting lighter and doesn't hurt/itch anymore. The graft is getting better.

Now I'm getting up. It is 1pm. I have two hours until I have to pick up my daughter. I am going to the gym.

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

(here are a few pictures from Dov's BarMitzvah- Nov 4th, 2011. I will soon post a link to the whole album, and a video of us all dancing-- even me!)

Here we are! It was such an unforgettable night.

this wasn't the BarMitzvah, but it was after Dov read Torah for the first time, in shul, on the Thursday beforehand. (Robert's brother from the US is in the background)

Cake I made for the kiddush- breastplate of the kohanim :-)

The proud parents with BarMitzvah boy

Shifra, Ya'akov & Azriel

Dovie in his handsome suit

two kids enjoying Grandpa's love (my father)

My brother Peter from the US, my father, my mother & I.

More medical stuff- two appointments

2011-11-22T23:02:00.000+02:00

Yesterday was the dermatologist appointment regarding gapey's 'perma-rash'. This was the appointment that was six weeks past the biopsy.
Blessedly, the biopsy showed that the strange rash is *not* skin cancer, as was the suspicion. It didn't, however, have any conclusive results as to what it is.
Once again, I have a strange medical thing that is stumping doctors.
We are trying yet another new cream, and I am now supposed to keep it covered.
Next follow-up in a month.

Then today, I went into Tel Aviv for a follow-up with Prof Meller in Ichilov. This time, however, I had no new scans for him; my next scan isn't scheduled until December. I called last week to see if this appointment is necessary, taking into account I have no new scans, and the secretary said it is an important appointment and suggested I not cancel. bleh.
I saw Dr Bikels today though, not Prof Meller. They switch off in the out-patient clinic, though I hadn't seen Bikels in a long time.

We talked about pain.
I told him I am on the Fentanyl patches now and they are helping a fair bit (but not fully).

I expressed my frustration that *I* know, and *he* knows, that we don't have any new ideas for me regarding this cycle of pain and narcotics. All there is is more of the same.
I asked the question that was sitting like an elephant perched upon his little desk- if my scan is good, then where is all this pain coming from?
"That is the question, isn't it", says Dr Bikels. He said that he has seen many patients with hip joints completely shot, in much worse condition than mine, and they do not need Fentanyl for the pain. Fentanyl is a *very strong* narcotic; stronger than Morphine.

He wonders if the pain *is* from the hip joint, or not.

He had a few ideas to try to focus the next step. Fist he wants me to go have another consult-- this time with Dr. Raht (pronounced vaguely like "Roth", but Israelis don't have the "th" sound very much). If we remember far back, I had a few consults with Dr Raht when he was still in Be'er Sheva. Then, he was on the team of surgeons who actually did my arthroscopic surgery to excise the PVNS in Ichilov hospital. Shortly thereafter, Ichilov took him on, causing his departure from Soroka. He is now considered "The" expert on hip diseases in the country.
I'll go see him after I have the MRI scan done in December.

Dr Bikels also had an interesting suggestion for a type of test they can do to see if indeed the pain *is* from the hip/thigh joint. They can isolate and numb only the joint itself, nothing else around it. Then I can see if I still have the pain, or if it's gone. I'd have to go off my pain meds for a while beforehand so I can feel all the pain that is there, in order to be able to identify exactly what I feel.

Doesn't sound like a great test... I don't like the idea of needles going directly into that joint. *But*, it would be good to know what is going on there. It very well could be some other type of pain; there is so much damage to that whole area.
It's just that I *feel* the PVNS. I feel the feeling that existed immediately after they did the biopsy, it is inside the joint. Also, recovering from the PVNS excision surgery, I got to know very well the pain that joint has to show me. *That* is the pain I feel.

The other pains I have-- from the mesh surgery a year & a half ago, gapey pain, nerve damage pain down the thigh-- I can differentiate all of it. But I also know that pain has many tricks it can play, and that nerves can fool you very well, like a ventriloquist can throw his voice.

My NF got out of hand because of "referred pain"; the surgeon didn't understand what was going on; the area that I told him that hurt looked pretty ok. It didn't look infected because it wasn't the area that was infected, the pain was being referred from the groin area to the outer hip.

I don't know.
I still like the starry idea of having a hip replacement and getting off all the pain drugs.
Would that it could be so simple.

back on my feet- medical update

2011-11-21T06:05:00.001+02:00

I did wind up seeing the specialist on Friday. This is a specialist (psychiatrist) in psychotropic meds; going on them, weaning from them. He's pretty famous, actually. First of all, he said that with Lamictal, it isn't really a wean as much as it is 'releasing that which was successfully under wraps'. It's a different chemical premise. Anyway, in short, he said that his advice is to stay on it, but on a low dose. Yes, ideally, it'd be great to be off as many medicines as possible. But we see that Lamictal is one medicine that my system needs, for better or for worse. His opinion is that the slight possibility that it may be contraindicated with the Lyrica is a very small chance to take while benefiting from it's main purpose, mood stabilizer.

As my doctor said a long time ago, while I was going through the worst stage of the PTSD, when I asked him why is this happening to my brain, "when a person comes back from having one foot in the Other World, we don't really know what goes on with brain chemistry" [or something like that].

Another reason to go back to the Lamictal (low dose) is that it actually was helping pain as well. How do I know that? I hurt more for the past two weeks. I hurt a lot more.
This specialist I saw on Friday also told me that it helps with pain. It is a nervous system suppressor, of course it could help control pain.

I am not actually 100% convinced of that last one; that the Lamictal helps control my pain. I don't plan to go back on a high dose (again, the contraindication problem with Lyrica); he suggested to try to stay on 25, so I don't know if I'll see it actually help pain, if it was.

The situation now is that I am back on 25mg. Lamictal a day. It is what it is.

I feel stable again, thank Gd!!!!

Sleeping is off again, though. It'll take some time to get that back on track.

Tomorrow (Monday) I will get the results of the biopsy taken from Gapey six weeks ago (that post is here). The rash is still blazing away and bothering me/itching/hurting all the time. I really really hope they have discovered the nature of it and have an easy treatment to get rid of it.

Interestingly enough, there is such a syndrome as "Lamictal Rash". Robert thinks that is what I have on Gapey. Could be right...? We'll see what the lab reports say tomorrow. If it is that, will it never go away as long as I am on the Lamictal? Oy.

Tuesday going for a follow-up with Prof. Meller in Tel Aviv. I'm going to tell him that the Fentanyl patches help lots with the pain from the thigh joint disease. Currently I am having more pain with walking and getting up from chairs (hurts a lot!), maybe as a result of less Lamictal, we may never know.

My next MRI is scheduled for December, so only then we can know if there are any changes in the joint.

The step down to 5mg- Lamictal

2011-11-18T00:58:00.000+02:00

Today: (Robert home, I'm not alone, Thank Gd.)

was up with insomnia last night, slept from 5am until noon.
got myself together, no nausea.
made lunch for my kids.
had a very, very hard time concentrating on anything, felt extremely frail and raw.
having forgotten an important part of my son's evening, I left it unplanned, un-thoughtout, and I broke... (the problem is that it is impossible to know what will make me break in this condition, but a failure in taking care of my children's needs will for sure do that.)
wound up in complete and total breakdown. I have no emotional immune system.
with Robert's advice, I took another 5mg pill.
went to bed. Tried to sleep.
was invaded by hallucinations... violent.
got out of bed, exhausted.

soon traveling to Jerusalem for a memorial service for my friend RivkA, zihcra livracha, who passed away a year ago.

Hopefully seeing a doctor tomorrow who may be able to help me with this horrible weaning.

Reality check...

2011-11-17T05:27:00.000+02:00

nausea. hallucinations. fuzzy vision.
seven more pills of five milligrams each. A few more weeks, and then I'm free from this medicine. It helped me with my PTSD over the years, and it seems nobody taught it how to say goodbye politely.

I allowed myself to take a walk down ambition alley today.
I strongly considered taking a course which would help with my birth preparation course. The course is from January to June, once a week in Jerusalem. I gave it serious thought and said to myself... "when I am done with this weaning I'll be good to go!" I even spoke on the phone with the instructor (who I know) and told her I am seriously considering her course.

Ummmm, yeah. Then I wrote to my trusty friend who I bounce things off of... who happens to also live with me.
Aside from the very difficult coursework demand for the class, my friend gently reminded me about how hard it is for me to have travel days. I forgot that a day of travel like that completely wipes me out for the next day or two. What was I thinking? (answer- I was thinking about being normal and wanting to advance my career. Normal thoughts for a not-so-normal mommy.)

I just want so badly to have regularity again.
But I have to think smaller... like, wake up in the mornings on a regular basis (after the weaning is through).

Know what else my friend reminded me of? My *book*.
Recently I was back in touch with the publisher who wants to see more of my book. I wrote her about what has been happening; mainly that my health has been unstable. I said that I hope soon to stabilize and have time for writing. She told me she looks forward to seeing more of my work, whenever I am ready.
I so want to write!! I think I need regular working hours where I just get down to it.

I feel so discouraged.
It is very, very challenging for me just to get up in the mornings and see my kids off. That is what I really want. But I also want to be available for them when they come home in the afternoons. And to cook meals and take care of their needs through bed time.

I can't do that yet.
But, after this wean is through, please Gd, the patches will keep me out of pain, and things can get back to a normal.
But I can't actually imagine a time that I'll be able to manage it all.

drowning in my bed

2011-11-13T19:09:00.001+02:00

Things have been just really hard since overseas family left... that is the time things were supposed to get back to normal. Well, normal for me, before the Bar Mitzvah, was that I was trying to wean off a medicine that was proving to be a hellish wean, remember? I stopped tapering it off a few weeks before the Bar Mitzvah so I could feel stable again.

It worked... I felt great! Only Hashem can lift up someone from pain and fatigue in order to celebrate; to celebrate a child who came of age in Torah mitzvot. And what a child he is. He recited the entire Torah portion (by heart), the Haftorah, and wrote his own wise words in public speeches. And then we all danced!! He spun around with friends, was lifted up on chairs, lifted up in his friends' arms without a chair. I watched my own boy/man play, and celebrate, and deliver Torah wisdom, all while wearing a goofy party hat. (thanks for the hats, J!)

I *will* post pictures!!

After sleeping long hours every day of last week, recovering from the festivities, this Friday night I picked up again with the weaning off the Lamictal. All the bad stuff that was happening before is happening again. I just have to live it and go through it.

Last night, 2nd night of weaning: crazy night. Migraine, throwing up.
As a consequence, I slept really late into today:
I had the most *insane* vivid dreams, like as if I were on acid or something. But I never did acid, so it's not like flshbacks or anything, just crazy. I felt like I was drowning in my bed, with tremendously vivid colors and balnkets with fringes and weird places to place arms and legs. Then the person directing the dream told us to do a Tsunami, and the whole "class" went nuts and threw blankets and bodies all over the bed. Then the teacher singled me out for some reason and I was sent back to the changing room, I was done with the class. I was confused. I went to the changing room and could barely figure out how to put on the clothes that were there for me to put on. Then there was a path to walk down to get home, but it was like in the middle of Manhattan, and everyone in this "school" and on the path was on the same acid trip I was on. Teachers, other students, all so bizarre and freakish. Geez it was insane.

Then, waking out of that dream-cycle, I tried to get up and dress and be human for my kids... I got up at 2:30pm (today). It was soon clear that I am not able to be human for the kids. I felt too off-balance and out-of-it to drive the kids to the friends they wanted to play with. While trying to put away a plastic bottle of pancake syrup into a high cabinet, my balance got off and it dropped. Syrup ~everywhere~. I lost it, I started crying and falling apart like someone completely incompetent. Ya'akov and Shifra cleaned it all up. Angels. Shifra told me everything is Ok, I can go to bed and she will take care of it all..... Gd how did I get such amazing children? She's 8.

Then I got on the phone to get help. None of my babysitters were available, so I started calling my own friends to help. Thank Gd when I called one friend and told her what is happening, and I needed brainstorming help as to what to do, she came to pick up my kids and take care of them for the afternoon. Robert will come get them on his way back from work in Mitzpe Ramon.

We're going to get through this.
There are testimonials on the internet from people who weaned off Lamictal who say it was weeks of living hell. It is an *awful* drug to wean from. I have been on 150mils for four years, originally started on it for 'mood stabilization' when I was going through the worst of the PTSD. I had to go off because it is contraindicated with the high dose of Lyrica I take for the nerve pain.

You see, both Lamictal and Lyrica are anti-epileptic drugs. However, they both are commonly used for the benefit of their side effects. Lamictal's side effect is that it helps with mood stabilization, and Lyrica's side effect is that is helps with nerve pain. *But*, if someone is on both, for the purpose of benefiting from their side effects only, the fact that they are both anti-epileptics is bad for that person. My doctor said that it could even *create* seizure disorders where there weren't any before. SO, I am going off the Lamictal. I need the Lyrica for the nerve pain, that is non-negotiable. Presumably my PTSD is in control and I no longer need a mood stabilizer, please Gd. I have weaned from Lamictal starting at 150, so far I'm down to 15mg, now for two nights. Tonight I go down to 10mg for two more nights, then a week of 5mg, then ZERO. Again, the testimonials that Robert researched all say the last bit was the worst... even from 5 to zero.

But then I'm done. One less drug in my body. Then I am left with the anti-depressant (from the PTSD as well), the Lyrica, and 37.5 mmg of Fentanyl (narcotic) patches.

One less drug here... hopefully in another few weeks I can feel free of the weaning effects.
But this is ****HARD.****

(check out this website for the info on Lamictal withdrawal... I have so many of these symptoms including jumpy leg muscles in bed, nausea, brain zaps, loss of focus, balance problems, feeling lopsided, vivid hallucinating-type dreams... this is one *nasty* drug, I want it out of my body, but it isn't going to be an easy end.)

the aftermath of a wonderful weekend

2011-11-09T00:50:00.000+02:00

I am fine, and I am thoroughly and profoundly exhausted. I am not going to write much now, I can't, I need to sleep. The bar Mitzvah weekend was wonderful! A whirlwind of friends and relatives from near and far, and the pride for my oldest child. It was just tremendous.

I will put up a website soon of all the pictures and speeches, they were great, too. Everything went as planned, and there was so much love and happiness that at times I honestly thought I'd burst!

I do have a lot of pain, unfortunately, but I think I knew the price would come. After all, I danced... and in *heels*!! :)

I have to go to sleep. I will write more when I can.

Bad things behind, big things ahead!

2011-11-02T01:24:00.000+02:00

I'm OK-- just checking in here. A friend wrote me today and said she pops into my blog almost every day to make sure I am alive and kicking. She asked for:

"even a few words, every couple days, lets us know that you are maintaining speed with everything, and not languishing the hospital or in bed..." (love u, CL)

So here I am, doing well, keeping up with the preparations for the BarMitzvah, which is this Shabbat! I can't wait! The preparations are pretty much under control. I drive to about 17 places a day doing errands and taking kids to friends' houses. Oh, did I tell you that the kids have been out of school, rather unexpectedly? It's kind of like a 'snow day', but without the beauty and fun. Here it's more like 'missile barrage day'. When our un-peaceful neighbors launch too many missiles (how many is too many?) our way, the authorities cancel school in order to keep the children safe. Three days have been canceled so far. So, with the occasional air-raid siren, we are preparing for my oldest son's life changing event.
Lord protect Am Yisrael.

So, today I ordered balloon centerpieces for the tables. That was after my appointment with Dr Z, my pain doctor, got canceled. So I'll see him tomorrow. He's been overseas since before Succot, so my whole hospitalization issue and getting behind on pain management hasn't been talked about. Did I tell you that I got behind on pain patches and Lyrica last week and got bombarded with pain again? Yeah, well, that happened. I was shocked at how much pain actually was there, just waiting to pounce. I spent a few days sleeping *tons* (still recovering from the hospitalization), and missed meds and patches because of it. Not good. I am caught up now, and pain is under control. It took a full three days to get out of pain once I fell behind. I learned.

Anyway, my parents and brother are coming tomorrow, along with Robert's brothers from America. Big things are starting! I pray I can keep up with it all.

Speaking of which, I am going to sleep. I slept from 4pm until 10 this evening, and now am going back to sleep at 1:20am. Tomorrow is a big day. Actually, tomorrow is today. :-)

The 'all clear' has been sounded

2011-10-27T02:20:00.003+02:00

The test came out fine, and there were no preliminary findings. Yeah!
I did sleep the whole rest of the day, but at least it was at my home. Also today I wasn't feeling 100%, but that is all part of it for me.

This is what we (Robert & I) decided about the hospitalization:
1) I must have thrown my back out. The reason for the horrific, body-searing pain I had when I went into the hospital two weeks ago was *not* that I was dying, as I thought could be the case, rather that I threw my back out when I installed the booster seat into the car the day beforehand. I made that seat *really* tight, it won't move a millimeter, that baby is safe. But what I had to do to make it that tight was basically jam myself down with my knee in the seat as strong as I possibly could to buckle it down. Well, I guess my body wasn't ready for that type of exertion. (and possibly moving an oven with another person the day before that, as well...)

2) the nausea was *not* from gall bladder problems, or kidney problems, rather, most probably, from the effects of weaning off one of my meds, which I have been in the process of doing for a month now. When the doctors in the hospital asked what meds I take, I told them, with the dosages as well. What they didn't ask, and I didn't think to say, was that the dose *last* week was different. Nobody thought to ask if there have been any changes in my medication.
Again, it took Robert to think of that one. He looked it up, and there it was, blaring, as an effect of weaning off this medicine: Nausea. ding dong!

So, I am OK, BH.

We still have a bunch of stuff to do for the Bar Mitzvah coming up, so I may not write so much. I sleep a lot. When I am up and have strength, I need to do stuff, and/or be with the kids.

Family coming in from the US next week!! Woo hoo!!

Tuesday procedure

2011-10-25T06:59:00.000+02:00

I have a test tomorrow (Tuesday) in the hospital. It is a test that was suggested while I was in the hospital two weeks ago, and I went home knowing that I'd be back for this last test.

I vacillated for many days now if I should go do it or not; I feel quite a bit better. We are very busy with preparations for the Bar Mitzvah, and also that my energy is *very* limited as is. The test is done under light anesthesia, and that can be very easy, or it can put me out for a whole day or more. Since I feel better, it was hard to justify.

*But*, a few of the symptoms have remained. Hard to ignore. These symptoms could also be attributed to the effects of coming off the Lamictal which I am in the middle of at the moment.

Bottom line is after MUCH discussion with Robert and a few friends about the whole thing, I decided that it'd be better to just go in and do it to rule things out.
If I don't do it tomorrow, I may have to wait a long time. And, as the nurse from the ward who I spoke to today pointed out, just because I feel better doesn't mean I can't have another attack like what happened two weeks ago. *IF* that is what it is.

So, I'm doing the darn test.
Gastroscopy (scope through mouth to view digestion parts), 8am hospital time, although who really knows when it will actually take place.
We just have to pray that I am home afterward, tomorrow night. That depends on how the anesthesia effects me, and also on findings from the test. Hopefully there will be no findings, and I will be home before supper. B'ezrat Hashem.

I'll let you know.
G'nite.

Not much time for writing

2011-10-24T02:28:00.000+02:00

I *really* need to be sleeping. I am still so incredibly tired. Problem is that I am awake at night and tired during the entire morning. How can I combat this!

I just want to quickly update that I am doing... OK-ish. I don't actually know what that means, but things aren't so easy around here, but not as hard as they could be, either. I am up and around, but often I'm not feeling at all well while I'm up and around. Lots of flu-ey, achey feelings, lots of times.

I am currently going off one of the meds I have been on for four years. It is quite possible that the symptoms I have are from that. It is documented as such for this particular medicine.

We don't know the source of the CRAZY insane pain I had a few weeks ago when I went into the hospital. We don't know why I feel so un-well now.

It is hard not having answers. Even harder when we don't even know which questions to ask.

I need to end now and get myself to bed, but I first want to post a few sweet pictures of what I did today while I was up and around.
Dov's Bar Mitzvah is in less than two weeks, and we had to go out and make him look respectable.

Turns out he cleans up pretty well. :-)

We look forward to seeing some of you with us!

Have good trips, grandparents and uncles!

Musings from a scared patient

2011-10-18T01:29:00.000+02:00

We are on vacation from school now because of the holidays. They (the kids and Robert) have been off since Oct. 7th. They go back this coming Sunday, the 23rd.

I came home on Friday from five days in the hospital.

Saturday (Shabbat) we had guests. I chose to clean up way more than I should have. After 5 days of being in the hospital, it was hard for me just to ignore the wear-and-tear of a household. The kitchen, the floors. Yeah, I did that stuff. Pain and all.

Sunday I spent time in bed, and today (Monday) I got out a bit (together with the family) to a friend's succah, which was nice. I started feeling sick, and I came back home. The children and Robert went to a fair here in Be'er Sheva, and I opted out. I wanted to go and have fun with them, and I felt sad for missing out on more family time.

I don't do recovery well. I think we remember that from many times in the past. I always need to try to get up and go too soon, then I wind up back in bed, and it is a vicious cycle.
This time is no different, but I do hope that I am just a teeny bit wiser.

The problem here is, *am* I recovering? I mean, anyone who spends a week in hospital, especially Soroka, knows that it takes time to recover once you get out.
But I got out because I signed myself out. No diagnosis had been found, and although the pain was less acute, it was (and is) certainly still there. So here I am spending time in bed, and I don't know if I'm sick or what.

Is this ambiguity that I can look forward to for the rest of my life?
I spend time in bed when I'm sick, I spend time in bed when I'm recovering. The days between these two states of being are so few, that I wind up not having enough energy to run around for a normal day's "stuff". In actuality, I have had many many days that I had the energy to run around and be available for the day. I just always have this fear, when I have to take to my bed, that that is what defines me... the Sarah who feels sick a lot, or who is permanently recovering.

[note to self: get back to pool as soon as possible. You'll feel healthier for it. But not if it is too soon................]

I already am barely working. I literally can't. That is why I am on disability. The Israeli government doesn't throw 100% disability at someone who they believe can be working. Being a mommy to my four kids is my full-time job, and I can't always do that, either.

My body hurts. I *DID* have a few pain-free days (week?) before this last hospitalization. The patch is working. But now my body hurts again. Interestingly enough, it's not my bum leg. *That* is fine. But the narcotics in these patches I wear aren't strong enough to wipe out the side/back pain. And then there is the occasional nausea and occasional low-grade fever.

I am so scared that this is just me now. Like "new prototype of Sarah, plans changed... this one is weaker and in bed lots...". I have a really hard time not being so absolute with these things. I've always been that way.

I need some fervent prayers that I will be healthy and strong at Dov's Bar Mitzvah starting on Nov 4th. I really need that from you.

Home, don't know for how long.

2011-10-16T01:08:00.000+02:00

I did come home for Shabbat, thankfully. It was great to be able to be with my family and friends in our beautiful succah. I guess I'll go back for the gastroscope test when they call and tell me it is scheduled (they told me it'd be Monday or Tuesday). I am supposed to go back as an in-patient on the same ward, so I have mixed feelings. I have mixed feelings about this whole thing... it's hard for me to write about it now, I think it is too fresh. I am still in lots of pain and I miss the relief the optalgin IV gave me, but I needed to get out of the hospital.
I think it's mostly hard because I was there for four days and there is no diagnosis. The ultrasound was a very important diagnostic tool in this case, and it wasn't done properly.
Don't want to talk about it, but I want to update the blog. I decided to use a post that I wrote the day I went into hospital. I hadn't finished it. I intended to, but the back pain took hold fast and furious.
There was another medical event that morning, before the pain happened, and that is what I started writing about.

So here is the post from the 10th of October:

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

It's been a while since I've had one of those "unusual medical happenings" posts. This one goes under that category.

So you know that rash on gapey which I have briefly spoken about? The one that hasn't gone away for about six months, and I've put just about every sort of cream on it? Well, yeah, that one. It's not all over gapey, but on the side where the graft didn't take so well.

Today's dermatologist appointment was for getting a specimen of the skin analyzed to see if it is a sort of fungal infection. Well, the immediate analysis shows that it isn't a fungus. They are going to do a six-week culture.

After the lab, I went back to the dermatologist. I was expecting her to give me yet another prescription for a cream, but instead she got this concerned look on her face. She wanted to see the rash again. She called in the plastic surgeon to come look also. This was a plastic surgeon who I don't know (a rare occurrence here in this town). He came in and was eyebrow-raising impressed with gapey. He asked me, of course, what was it from. I told him in my flat, emotionless way I have grown to say it, 'necrotizing fasciitis'. He said "uh-huh". Ok, then moving right along...

He suggested that it needs to be biopsied.
"What"? I said.
Then he and the dermatologist were talking to each other without me involved. Love that.
Apparently, these sort of large grafts can develop tumors underneath them. Yes, tumors. It wasn't specified which sort of tumors. The plastic surgeon said that we usually see this sort of thing happen in older grafts, and mine is only four years old. But, he said in rare cases it can happen. In rare cases. Uh-huh.

The sort of rash I had is sometimes an indicator of something taking place deeper under the graft. But, I had the mesh surgery just over a year ago, so you'd think that the surgeon then would've seen something?
Well, it's probably nothing, *BUT*, I had the biopsy done. I was a bit shocked, needless to say,

It didn't hurt, they used a local anesthetic. Just took a little piece right outta gapey.

Now it'll take six weeks to get an answer! Why so long? Who knows.

So in six weeks I'll have the answer about the long-term skin culture, and about the biopsy.
I am putting it out of my mind from here on out. I have better things to think about, like making invites for my son's BarMitzvah, and planning details... it's in three weeks. :-)

OK, don't get overly worried, but...

2011-10-14T04:50:00.001+02:00

Sarah has been in the hospital since Monday night after suddenly developing severe lower internal back pain, mild nausea, and upper right abdominal sensitivity to palpation. I'll let Sarah share all the juicy stories of hospital incompetence/chutzpah, but basically the doctors still don't know what's going on, despite having already taken x-rays, a CT, and doing an ultrasound. The next test they want to run is a gastroendoscopy, but since there's no one to do it until Sunday, Sarah is stuck in the hospital until at least then. The good news is that she's getting two meds that are pretty much taking care of the pain and the nausea, so she's able to rest, eat OK (when the staff isn't making her fast for the next test), and entertain visitors. Interestingly enough, the painkiller is intravenous Optalgin, which in its oral form was worthless for Sarah. As fate would have it, one doc suggested it to get rid of a migraine Sarah developed while in the hospital. It really worked! *And* it relieved much of the lower back pain, to boot. So one good thing that's come out of this story is that Sarah has a new option for treating her migraines. Anyway, hopefully Sarah will be writing the next update, and it will have some really great news -- G-d willing!

In the meantime, I would like to take this opportunity to express our sincere thanks to "M" for sleeping over with the kids during the all-nighter at the hospital Monday night, and then basically taking the kids for most of Tuesday (with some help from "R", as I recall). Also, a big thank you to (a different) "R" and to "B" for the delicious chicken and potatoes, which were really clutch as I was running around on Wednesday trying to build a sukkah, do several loads of laundry, take care of the kids in general, deal with the hospital, etc., etc., all before 5pm and the start of the holiday of Sukkot. And I want to thank "J" for visiting Sarah in the hospital today when I was too exhausted to. I hope that covers all the thank yous I owe.

BTW, I took the kids to visit Sarah earlier this evening, and she was in excellent spirits, which were buoyed by seeing the children and getting wonderful pieces of art they had made for her. Still, she really, really wants to come home, but it's a difficult decision because it means not getting the intravenous meds, plus possibly losing time re the gastroendoscopy. We'll see...

Robert

"New Math"

2011-10-10T00:24:00.001+02:00

Well, it takes about three hours for a new pain patch to really kick-in. And it takes about six hours until I start feeling the side-effects from it. It is the best plan to put on a patch knowing that six hours later I will sleep off the side effects, but until now that hasn't really happened successfully.

I wear two patches, one of 12.5 units, and one of 25 units, 37.5 units together.
*BUT*, they aren't always together.
Each patch is effective for two days. The days for each patch are opposite, though. It seems that there is one day that I don't have a patch to change, but maybe I am not being so exact in the hour of the day I changed the patch two days beforehand.
Now I have started keeping a record of when I changed which patch.

Then there is the issue of wondering if I should change a patch if I am feeling good. Like "maybe I should see if tomorrow I'll also feel good; I could put less narcotic into my system if this one lasted three days instead of two". But then I remember the last time I tried to go with that theory and I woke up in pain. It took the better part of a day, then dealing with an overdose because I took also the "breakthrough pain" lolipop, to get out of pain again.

Keeping ahead of the pain isn't as easy as you would think, is it.

Anyone have a schedule worked out for me based on this information? (Yosh- this one's for you...)

Sarah, prototype "no pain". Projected launch: coming soon!

2011-10-04T23:43:00.001+02:00

New colorful blog presentation, new Jewish year, new meds. New hope. :-)

This "tweaking" of the Fentanyl patches is difficult and complicated. The reason to persevere is that it helps the pain go away. Nothing else ever did that. I truly believe that this is the solution to my pain woes, but it is complicated getting the dosage right. There have been times I overdosed myself and wound up nauseous all day. Then, there are times like today...

Last night I put on a patch of 25, reasoning that it is in place of my regular two patches of 12.5 I had been wearing. Sounds logical, right? It seems, however, that 25 is stronger than 2 patches of 12.5. Go figure. So I surprisingly slept **all daaaaay**. I had things to do! I thought I'd take a nap, then get up and go swimming, then get to the craft shop to pick up what Shifra needs for her school project, then come home and have an afternoon with the children, make dinner, ...the usual. I woke up from that nap at *8:30pm*. Thank Gd Robert was off today. He did the whole afternoon. It meant, however, that he was unable to do the things *he* had to do today, which makes life more difficult.

This experimentation is costly (family-wise. The cost itself is virtually free). It has been costly, actually, for so long now. It sometimes seems like life will always be this way, but I have faith that it won't. Please Gd this medicine is the answer, and we will get the dose right soon. I haven't had faith like this in any other medicine l have tried before. I have never been out of pain before, either. It is still a miracle, every minute I am out of pain. Stepping out of bed, getting down and up from sitting, walking with less pain, or no pain even. I pray that it will work itself out SOON. Meanwhile, I need to go back to sleep now, I am still very sleepy, even after sleeping all day. I keep fixing typos every other word-- this medicine effects my fine motor skills when I get too much.
I did talk to my kids today when they came up to my bed here, each one, when I woke up this evening. At least that.

There is an update about a different aspect of life after nf; this one about gapey. That rash I have had for many months now; I went to a dermatologist for it about three weeks ago. The cream she recommended didn't work in the long run. I put it on twice a day, and it helped only for that day. The next day it looked the same again. I did it for a few weeks, and the rash never went away.

I went back to the dermatologist yesterday. She said now that I should not put anything on it for a week, then she will do a culture to determine what it is. It is tight and uncomfortable with no creams on it, though. She suggested that my body is rejecting the graft in that place. If that is the case, there isn't much we can do about it. Just hope it won't spread. We'll have to wait until the culture (scheduled already for next week) to determine what may be going on. Again, NF is the gift that just keeps on giving.

All-n-all, though, I feel optimistic. Things are looking up just knowing that there is a way that I can be out of pain. I pray (together with you) that the side effects end and I will be able to use this patch freely. Being on such a strong narcotic (it's stronger than Morphine), though, takes it's toll. "It is what it is"; that's what Robert keeps saying. It is hard for him.

Reaching new stages comes with growing pains. We are still aiming to give birth to this baby: Sarah, prototype "No Pain". Labor pains, growing pains... very similar in concept!
No hip pain, however, is a brand new concept. One that I like very much. I am willing to go through whatever it is that I have to go through to hold onto this concept; this reality.

Lots of praying, lots of patience. That's the only way.

My laboratory

2011-09-28T17:22:00.000+02:00

In the past few days I have had a few good conversations with Dr Z about pain and fentanyl (the medicine that the patch diffuses into my body). This doctor is so available, I know I can always reach him when I need to. I also know that when I am in an appointment with him, he takes other people's phone calls, so I feel Ok with calling also.

He helped me work out how to tailor this medicine to suit my needs. It turns out that things are very flexible regarding how to us it. Pain relief is the goal, and reaching that goal is not, by far, going to be the same for everyone.

The patch is prescribed to last for three days. But for me, the third day is as if I have no medicine at all in me; my pain level is quite high. Dr Z said that in that case I should change it every two days. The three days is not sacred. Together with that, if I experience "breakthrough pain", I could use a half patch; yes, it is OK to cut them in half. Who knew? I could also chose, instead of using another patch for breakthrough pain, to suck part- or all- of a fentanyl lollipop. Or, if the pain is only eased by adding a whole patch together with the existing one, I should buy the patches that represent that higher dose in one single patch.

He gave me prescriptions for the two different doses of patches, just in case I do wind up needing the higher dose (which is twice the one I wear now). I already have the lollipops here, so that is a possibility at hand as well. He gave me the tools, and I am to experiment and figure out, by trial and error, what works for me. He called it a "laboratory".

In the meantime, today was the first day of a new patch, and it was *very* successful!!
What made it successful is, perhaps, that I put it on at night, and went to sleep with the hopes of dashing the new-patch-side-effects and wake up out of pain. It WORKED. All day today I was able to enjoy a [relatively] pain free day!! This counts as the second magical day in four years; the first one being that one last week that I experienced being out of pain for the first time in four+ years.

I did way too much today, I totally pushed it. I went shopping with Shifra, which was very strenuous. Then I had all evening with the kids (dinner, and they were full of vacation exitement), topped off with the baking of six challot for Rosh Hashana.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Aaaak! I fell asleep at the end of that last paragraph... It is the next day now, and nary a few minutes from the very Holy day of the new year for the Jews. Sorry there is no logical literary ending here, but I gotta go.

To all my Jewish family & friends, Chag Sameach, Shana tova! May we all share blessings of health, peace and tranquility. See you next year. :-)

The dark path and the lightening bolt

2011-09-26T00:34:00.000+02:00

My friend wrote me of a story she remembered about a man who was walking in the dark, and couldn't see his way. Suddenly there was a bolt of lightening, and it lit his way for a brief second. With that bolt of lightening, he was able to get a glimpse of where he is going. Then it was dark again.

That was my one day of magic, the day I wrote about in my last entry.
I think this medicine will work for me eventually, but it has to be "tweaked", as another friend says. I think we got the general direction from the lightening bolt... now we have to sniff out the rest of the pathway.

The day after that I had what is called "breakthrough pain". So, I took basically what is a booster for the fentanyl, and it apparently was too high of a dose. Knocked me for a loop. I got up again for the next round (I always do). I replaced the patch on Saturday, as it was the fourth day; the patch lasts three days. Well, there wasn't good overlap, so I got into pain again on Saturday. When the new patch did kick in, it also knocked me for a loop... nausea, then I wound up sleeping all day. We had guests over, and I'd have liked to have spent time with them. Nope, I was in bed... again.
Today, the second day of the second patch (get it straight :-)), I had less pain, no nausea, and plenty of energy. I am in pain now, however, midnight (actually 1am), and tomorrow is day three. I replace it on Tuesday. I meet with Dr Z on Tuesday. Maybe we'll raise the dose, I don't know. I seems my pain needs a higher dose, but my body can't take it. It throws me down each time.

I had one day of a taste with no pain. I can't go back.

And, as if life weren't complicated enough, I am ~also~ in the process of going off of a medicine I have been on for four years, since my PTSD started after the NF. I have to go off it, it is contraindicated with the high dose of Lyrica I take (600/day). We are going down **very** gently, but I think I feel it a bit. Not in the physical way I usually feel meds ending, but I feel my mood changing a bit. It is so strange to just get outside of myself and look at what is going on.

All of this makes it really hard to parent well.
All of this makes it really hard to feel internal quiet.
The amplifier in my head is back... everything is too loud for me.
Life is too loud for me.

The pain is very loud for me.

Not very happy with life right now.
This is how I am going to bring in the awe of the Jewish new year approaching in a few days?
Help... spiritual help, I invite you to please crash this party and make yourself known...

The first day of the rest of my life

2011-09-21T23:45:00.000+02:00

I don't even know how to write this post. There is a possible miracle happening here regarding my pain, and I don't know how to write it because 1) I don't know enough about the long-term possibilities for me regarding this development, and 2) I am in a state of unexpressible joy, combined with shock.

Robert came with me yesterday to Dr. Z.

The three of us talked a lot about pain meds, bad withdrawal from the meth, options for the next step, etc.

After lots of discussion, Robert suggested "the patch" (it is a pain relief narcotic drug named fentanyl delivered by a patch stuck onto the skin). He read about it on the internet.

Dr. Z quickly took Robert's suggestion, although he, himself had never suggested it. Dr. Z said "the patch" would be good for me with this withdrawal I have been suffering from. I could use it to ease the symptoms of withdrawal. Stop-gap measure.

After sleeping almost 18 hours yesterday and last night, and waking today with awful, awful withdrawal symptoms (shaking, cold, brain synapses firing uncontrollably- a torturous experience), I put on "the patch". It is this tiny piece of clear square celo tape (clear tape). You can't believe that it can time-release medicine to the bloodstream for three days.

An hour later my throat swelled and my chest tightened. I felt I was going to need a shot of Prednisone or Benadryl at the hospital. But, remembering my last experience that this reaction sorted itself out without the shot, I waited it out, at home, alone. I have had anaphylaxis before and it is *scary*. I was quite anxious for a while there, but it indeed start to go down. My throat started to let more air in, and my chest started to loosen it's grip. I waited it out. My body started accepting the new medicine into the bloodstream.

Then an hour later.........

my pain was gone.

Gone. My leg joint didn't hurt me anymore. I was left with a slight dull ache.
I could sit without pain, rise from a chair without pain, walk with longer strides without pain, step down on the leg without pain, go upstairs... without pain.

The fentanyl patch.
It wasn't meant to be a successful pain medicine for me. It was prescribed for the purpose of helping ease the methadone withdrawal

I bent down to get something, I winced out of habit... but the pain didn't happen. A wasted wince. :-)

Un-buh-lieve-uh-ble. (a friend wrote it that way on my blog once- hat tip to DB in NJ. :-))

The patch.
I can ignore it for three days and it does it's thang. Switch it, and it'll continue to do it's thang.
It is a miracle. MIRACLE. No pills, no liquid medicine three times a day (it was that way with the meth). Just a piece of tape on my skin, to be changed every three days.

Now we just have to make sure it is ok for my kidneys... it wasn't prescribed for [my] long-term use. I have to call Dr. Z tomorrow with this news, and ask that important question. Then call my nephrologist (kidney doctor) and get an "all clear" for this fentanyl.

Then we have to do the test of time-- if I'll have to raise the dose every so often like I have to with the Lyrica, if my body gets too used to it and I'll need higher and higher doses. That wouldn't be a good thing. Or maybe it'd be fine. I don't have enough info at this point.

I have another very important thing to say about this fentanyl patch, but it has to be another blog post. I can't get into it now... it deserves it's own post. It has to do with what my brother-in-law Larry said in a comment on my blog entry before this one. I will get to writing about that puzzle piece falling into place too, but I just need time to digest all this at the moment.

Please daven (pray) for me that this is the refuah shlayma (complete recovery) that Hashem has finally sent me before this Rosh Hashana. Daven that this is my relief. My pain is gone. This is when I need really strong prayers. Prayers filled with hope, not desperation. That was then, hope is now.

H o p e i s n o w.

(Did I tell you my hip pain is gone?)

breaking point?

2011-09-19T10:09:00.000+02:00

I am getting to the point that I think I don't want any more medicine experimentation.
My body and soul are suffering.

I am planning on telling Dr.Z that on Tuesday.
If narcotics are the only way they know to get a person out of pain, then maybe I need to take a break and explore elsewhere.

Not much I haven't explored. Let's see...
I could go for acupuncture again but with a different person; someone private was recommended.
I could try the hypnosis road again, although I feel I can't do it. I could talk with the therapist about it again, though, perhaps.
Homeopathy? Maybe it's possible...? (RKD, LY!)

I think I am opting out of these heavy medications.
I *think*.
Maybe I'm just exploring what I think, you know?

My body needs a break.
*I* need a break.

Steamroller blues

2011-09-19T09:42:00.000+02:00

Going to Soroka (non-birthing areas, that is) is just such a crazy thing for me. I mean really crazy. It is so traumatic, and I only now decided to come out and say that (realize it out loud, actually). I have to go there so often, it seems. Being at Soroka re-traumatizes me each and every time. It is a trauma vortex, and it sucks me in.

Knowing that I need to go there makes me not go to sleep well the night before.
Driving there, looking for parking, it is so traumatically familiar. I think I need to use that word a lot with this writing tonight because I am trying to get~ it~ out. Does it ever get out, the trauma?? Will I reach a point that I am ready to let go?

To top off the whole experience of being at Soroka today, the pain clinic is conveniently located right near the surgical wing. Many, many memories in that wing. As I filled my water bottle today, I turned around and noticed that I was in the exact waiting room that my husband and father-in-law (of blessed memory) were waiting for news about what was wrong with me. They soon learned, as the surgeon walked out to tell them, that I may be dying, that there is some sort of "bad bug" on board. (those were the words used).

So there I was today, filling my water bottle at the fountain. It was like I was seeing ghosts reenacting that day, being in that room. I should have been happy that I am there and well today, but happiness wasn't my emotion. I wanted to cry. Not so far away from that area my surgery was going on, trying to save my life. I know it sounds dramatic, and 'that was then, this is now'... but for me, then and now aren't separated. I have not birthed that baby. I keep the trauma of the crazy thing that happened to me inside me. Like my heart is inside me. Kind of like that.

So, skip to the appointment with the pain doctor.
I had never met him before.
I had the same sort of monotone as I explained why I was there, and the chain of events that landed me in his office. I am sort of just inanimate when 'trauma vortex' is the personality talking.

After a long litany of the meds I *have* tried and why they failed for one reason or the other, this doctor decided he had the perfect drug for me. Oh, this was after I said that I am interested in options aside from medications (nerve blocking). He ignored that and went right to suggesting a medication. It was one of the meds that *had* worked for me, but I had to stop because it started making me throw up. So he recommended it again but this newer version of it has an antidote to a side effect, which would be perfect for me. Except that the side effect is constipation. I never told him I had constipation problems. Had he asked, I'd have told him that I am pleased with my regularity, thank you very much, but he didn't ask. So, here is this medicine, oxycodone, but with soft stools. Joy.

But.... umm....HELLO!!!!!!! I'm Not Constipated!!!!!!!!!!!!! (Maybe he is?)

but anyway, he didn't hear me.

So, I left there feeling so... bleak.

I walked through the hospital to go to the cafe. They have soy milk lattes there, and it isn't so easy to get them other places in the city. I usually get one when I go there.

Then I was grateful to meet a good friend for a lunch buffet at the Indian restaurant. Good food, good company. Gratitude.

I was so exhausted, and I wanted to cry so badly. The vortex had seeped through me in that place. I wanted to cathartic-ly cry it all out, then take a nap and a shower. *Then* I'd feel better. A nice cup of tea, and I'd be good to go.. But there would be no time to cry. The day was busy, and although I wasn't ready for it, it was coming. I had to start to run so that the steam roller behind me wouldn't catch up, you know?

How really does anyone keep up with everything in life? I mean, is it possible? Common-- there were three different parent meetings for my kids at three different schools at the same time tonight, with my husband out of town. I didn't go to any of them because I had promised my son I'd take him out shopping. It was a promise I needed to stand by. We went shopping, I ignored the general meetings, the pain, tiredness, emotional upheaval.

How really are we supposed to absorb all of our children's issues and make it all OK? And all the things that have to be done-- it's endless. How do people really do it?! And why am I not cutting it? One kid needs help with homework. One needs help getting his books together, he needs new glasses also. Food, clean up, cook, feed constantly. Laundry. One kid is very together, but she needs me-- a lot. I need time to get her to the pediatrician for a nagging cough. Oh, another kid needs a dermatologist appointment for a foot thing. The little one, he says *constantly* that he needs me. Just like that. If I ask him what he wants to eat for dinner, it's "you"! (then we go around trying to eat each other). Also, I need them more than anything in the world.

But it's just all too hard for me. I am not cutting it. The steam roller is catching up, and I'm not sure how much faster I can run.

(BTW- the title is a reference to the song by James Taylor by the same name.)

Say "no" to narcotics

2011-09-16T17:17:00.000+02:00

I remember when I was just home from the hospital after NF, I often had many flue-y like days where I felt that I had a fever, chills, cold sweats, aches like a fever, the whole thing. But, I didn't have a fever. I'd take two Advils and go to sleep. It went on for a while like that, until it stopped after a few weeks.

However, the pain continued, and I started using high amounts of Voltaren. I also used high amounts of other NSAIDS (which are now forbidden because of my kidney problems, which were most probably caused by those drugs). In fact, after each difficult surgery, I relied on either narcotics or Voltaren or NSAIDS.

Since then, I have experienced narcotic withdrawal other times, after the other surgeries where I was taking narcs for pain relief (after the PVNS surgery I was taking "Oxycod", also the same thing happened when I stopped.)

I am now withdrawing from Methadone. It wasn't good for me going on it, and it is *not* good for me going off. I am miserable with the 'flu-non-flu', once again. We are doing the withdrawal so slowly, you couldn't even believe that there could be such strong side effects. But each time I go down another CC on each dose (that's three cc's a day, because I was taking three doses a day) every four days. That is to say, every four days we lower the dosage again. And for me, every five days, I am in bed feeling AWFUL.

I can't handle it anymore. It is just so awful. I have hard enough days *without* meth withdrawal.

I will *not* go on any more narcotics. They are **not good** for me. I have said that to my doctors (including Dr. Z), and then I wind up on them again. Dr. Z was very confident that the meth is the drug for my pain. We went up in such tiny increments because I am very sensitive to narcotics. Well, I wound up having the "rare" side effects that only happen in "15%" of the cases. My joints all hurt. I was swollen and had edema. Other things were also not working right in me... time to go off.

~~Bad withdrawal~~~.

ENOUGH.

But... (as I sobbed next to Robert today)... I- am- in- so - much- pain...(and then continued deep sobs.)

What can be done?
"Nothing" cannot be the answer. Please Gd don't make that the answer.

(Soroka pain clinic first-time visit on Sunday, back to Dr. Z on Tuesday.)

motherhood and pain

2011-09-15T01:47:00.000+02:00

I repeat and repeat the same things in my writing... so maybe this is it.
I have good days and bad days. All my days have pain. Maybe this is just it.
I can't imagine how we are going to approach the next step in finding another way to try to alleviate the pain. Allergies, reactions, hard drugs, going on and going off some really strong pain meds that didn't work for whatever reason.

Maybe this is it? Maybe there will be no pain control option? I actually have a consultation in Soroka on Sunday. I trust my pain doctor, Dr. Z, but I was given this appointment last year when I had no pain doctor. (this blog post is the reference to that issue. Look one paragraph from the end for when I said I actually was scheduled for this appointment. Wow, though- reading this post, there have been improvements, but the "is this it?" question is there, too.) Since the appointment was so far in the future, I went to the doctor in Jerusalem (Dr. D, who started me on Lyrica, for which I am soooo grateful), then changed to Dr. Z here. While I've been experimenting with Methadone, my Soroka appointment caught up. It is now Sunday. I'll go... what have I got to loose? Another opinion is just that; another opinion. Take it or leave it. Perhaps there is something new under the sun?

My good days are really good. They often start with a swim. I am totally available for my children, although I find it extremely hard to absorb all of their trials. I am not good at letting it roll off me; my kids problems effect me deeply. But I am there for them. I drive to & fro all the time, I help with homework, I cook healthy meals and I give everyone individual love, however it is that they need it. I laugh with all of them. They crack me up, all of them with senses of humor and idiosyncrasies that are so fresh and miraculous.
My good days are just so delicious and full in body and heart.

There are a lot of un-good days. My health issues bog me down. I have heavier pain, my body feels sick. I don't get to the pool. I feel like only half a mother, half a partner. Those are really hard feelings. There is often a babysitter on those days, and my kids come visit me in the bedroom. I have said it so many times, I do not want to be the mother who's kids think of as sickly.

Today Ya'akov and I were both down with fevers. In one way, it was comforting to know that my illness is common; if he has it too, so I'm off the hook for something exotic. In another way, though, I always have that private world going on inside my head. It is the PTSD world, where body memories of what happened to me are still quite alive and active.

It goes like this: This past Sunday I had a few moles excised from my body. Nothing much, very quick in-office procedures, a few stitches for each one, and I was out in 15 minutes.
But cutting and stitches throw me back to "the zone"... of PTSD. Then the fever comes along, after I had already gotten rid of a virus a few days earlier, and HUGE amounts of paranoia settle in for a picnic. I asked Ya'akov twice today to check the incision on my back it make sure it wasn't looking red and infected. (it's not. Both incision spots are fine.)
It is all so fresh on the surface still, even after four years. All of it. It was so unbelievable. Did all that insanity really happen to *me*? My body remembers all too well, and so does my soul.
I notice that the mole which was excised from my chest is in a small cluster of tiny scars which used to be my central line stitched in. That mole excision scar will fit right in.

The fever lasted all day today, with no other symptoms. It is what it is. Reading back in blogs, I get low-grade fevers quite often, don't I. It is part of my "gestalt" now, I guess.

But is this really it? I want to be the good mother I've turned into and be healthy and strong as well. Could it be that I can 'let go, live and love' precisely *because* I have health problems which force me to slow down, be lighter-hearted and laugh with my kids?

It's a possibility, isn't it.

fever

2011-09-10T22:54:00.000+02:00

Been sick. bleh!
Three days of fever and bad pain.

I don't know how much any of this has to do with the Methadone withdrawal. As my doctor said "with you, we don't know".

I wonder about continuing with the search for pain control. It is arduous and stressful.
Which is worse, though, isn't clear. I took a Percocet last night when I was having a lot of pain, and it was such a relief, I can't even put it into words. I happily cleaned up the kitchen and walked the dog while Robert was falling off his feet tired. Pain relief *matters*. But at what cost?

Can't deal. Too much. Gotta just get better.

(ps-- Percocet isn't a long-term option. But when I sprained my ankle, and for the once-in-a-while measure, it seems to work well with no side effects.)

the memoirs of Deborah Masel

2011-09-09T00:31:00.001+02:00

In my last blog post, I made a link to a book I was reading. The link was actually wrong. I have fixed it. The book is called "Soul to Soul", and it is written by Deborah Masel, of blessed memory. She passed away from breast cancer metastases only weeks after this book was published. Here is the proper link. This book is phenomenal. It is dark, light, health, sickness, fear, bravery, Torah, Kaballah, poetry, and truth. Please think about ordering a copy, you will be transformed. I am.

I am planning on reading it again. I need to soak it in more, to embody this woman more. I need to savor the good parts more, and mark the spots that ring true for me. So many spots rang true for me.

She is searching for Torah. She searches in Tzfat (a wonderful, mystical city in Northern Israel), but ultimately goes back home, to Australia to continue learning.
She is diagnosed with breast cancer.
Shortly thereafter, as a result of a course of tests she did to prepare for the mastectomy, she is told there will be no mastectomy, her cancer has spread; metastasized. Lungs.

Chemotherapy, then brain mets. Whole brain radiation. Chemo. Radiation. Bones. Bone drugs in the chemo.

Almost all of her story parallels the story of my friend, RivkA Mattitya, who passed away of breast cancer metastasis in November, 2010. I can't believe it is almost a year. I felt RivkA reading with me. I saw the same meds, the same courses of events, the same names of chemo drugs, the brain mets diagnosis and radiation.

This book, Soul to Soul, the author talks about the important people because of their illness, and the less important. She likened it to being at the school nurse with a bleeding, scraped knee. At the same time you are there, another little girl is badly wounded, looks like a broken leg. They need to call an ambulance, immobilize the leg, call parents. The girl with the skinned knee is pushed to the back. She isn't hurt badly enough for attention.

The author says now, she (herself) is the priority patient. She likes it.

How does this relate to me?
Well, I so closely related to her and her illness, and her faith. But it's weird; I am not ill anymore. I have medical issues related to having been ill, but I am relatively healthy, thank the Merciful Lord. I feel, however, that the days I was really ill were somehow better... well not exactly better, of course, but I felt I was closer to God than I feel I am these days. Remember-- a feeling is just that-- a feeling. It is not necessarily truth, and it is transient.
I think my writing was much better then. I felt it more; I felt it all the time when I "wrote myself out" (The author's saying, I love it, it is exactly what I feel when I need urgently to write-- to write myself out.)

My posting has become less frequent. I find myself not feeling I have to write. Or better yet, feeling I do have to write, but not knowing what to say.

I think the author, Deborah, said it well for me:

"Death and creativity have always danced together in a way that has a power all it's own."

And there it is. Creativity within facing death. Creativity happening in the trauma.

I am Ok these days.
I am not facing death, I am not nervous about how my next scan will turn out.
No surgeries loom in my near future.

My pain issues, my kidney issues, intermittent sicknesses... it's all the girl with the skinned knee. (but inside me I am screaming! I am the one who had NF! See? I have a HUGE crater and skin graft! I had PVNS, an extremely rare disease! Don't I get to the front of the line? Well, truthfully, yes, in some cases. But that is a different story. There are so many stories in life.)

I miss having the creative juices flowing. I'll get them going when I delve into writing the book.

I miss Devorah Masel, although I never met her.
I miss my friend, RivkA. I really, really miss her.

No title-- too tired.

2011-09-06T22:17:00.001+02:00

"There used to be a time that if I had more than one doctor's appointment for myself in a six month time period, I considered it an imposition."
-Deborah Masel, "Soul-to-Soul" (I am into this book right now)

I've been to many doctors in the past few weeks. I'm done for a while. I've had my follow-ups: with the kidney doctor, then Prof Meller, Dr. Z, and then to my family doctor to sum it all up and get what-all I needed to get from her (paperwork, lab results, blah, blah, blah).
I'm officially done with the appointments for a while. Oh, well there is the dermatologist next week; gapey is still not healed from the rash. Stubborn one.

I need a break.
I am exhausted.

I have another two weeks until the methadone weaning process is over, and I don't know what 'clinical trial' is next as far as pain relief ideas. (although regarding migraines, I have another medicine ready at hand to try when I need it next.)

It is very hard to be not sick but in pain. I mean, obviously, I am not saying that it'd be better to be sick, Gd forbid. I am saying that it is hard to play the "I am a stay-at-home-mom who can do it all" game. I have a leg that hurts with every step, with every sitting and rising. I tire easily; it's just my reality now.

I wish I could sometimes have the right (and the framework) to rest more. That is different from snatching rest time-- it is that I want someone else to do my driving around. Someone else to organize what the kids need with school and make sure they have it. Someone to bathe the little one when I am trying to help with homework and check heads for lice at the same time. Or better yet, check for the lice so *I* can bathe my little one. Someone to free me up to play with my kids.

...or to rest. I need to rest. It's been a really intense few weeks since we returned. We haven't had time to stop for a minute.

Oh, and Dov has grown out of all his pants except one pair.
Azriel has even outgrown his undies.
Many of Shifra's skirts are now above the legal knee limit has in her school.
Shifra has a nagging cough and intermittent ear ache since we were in the States, I have to take her to the pediatrician.

We need to buy a new car.
We need to organize the Bar Mitzvah and get invites out already.
I need to figure out what hours I can tear myself away from the kids afternoons to get a babysitter for me to write my book. (or not)

I am all that, and I need more rest than many people.

Good night, my eyes are closing as I type.

I want to quit going to doctors. I want to pretend everything is fine.

2011-08-31T02:49:00.000+02:00

I feel really positive about the decision to go off the methadone. I think it would've taken a tremendous amount to take care of my leg pain, and the side effects of the [relatively low] dose I was on already were unpleasant for me. I am looking forward to the side effects ending.
But doesn't every drug have side effects? I guess the question is whether one is willing to live with them or not. In the case of the meth, I really am not willing to live with a few of the side effects.

I wish I didn't have pain.

What to do next is the question. I have no idea. I await the recommendation from Dr. Z.
I honestly feel resigned to not ever finding a medicine that will help with the deep bone/joint pain I have from the PVNS. It has been with me steadily for three years. Even Prof. Meller said that in all his experience, nobody has found an effective drug for PVNS pain.

Why me?
(Have I ever written that before?)

Another issue I await the recommendation of Dr.Z is the migraines. He had said that he hoped the methadone would also help with them, but we didn't get far enough with the meth to find that out. I was at the nephrologist today at Soroka, and the issue of the migraines hit hard when Dr. T (kidney specialist) came down on *me* hard that I was still taking the Advil, which is an NSAID; 'poison' for kidneys.

My kidneys definitely have "CKD"-- Chronic Kidney Disease. I have very small kidneys, and that hinders effectiveness. They are small presumably from all the tremendous amounts of NSAIDS and surgeries I've had in the past 4 years. I learned that these things can make kidneys shrink, although some people are born with small kidneys. But mine are abnormally small: 8.5cm, when normal for a woman my height should be 11 or 12 cm. That effects function; less stuff goes through the filters. I have also the nephrocalcilosis which inhibits function even more.

When he told me it is forbidden to take Advil, and I told him I have no other choices with the migraines, he put his hand strongly onto his desk and said "You Mustn't Take Advil. You will wind up on dialysis. Do you understand what this means?" in a voice that says that daddy is really mad at you.

then I cried.

I am allergic to many medicines. Some others simply don't work for me. I am with one of the best pain doctors in the country, and I am waiting to see if he has another suggestion. Meanwhile, I am getting migraines, and I am taking Advil in large quantities when that happens-- it's the only thing that helps me have relief. The Advil turns my migraines into smaller headaches. Then I have a chance to sleep.

what am I supposed to do?

Dr. T (kidney guy) *called* Dr. Z, pain doctor, right there in front of me. Apparently they are friendly colleagues. He wanted it clear that answers need to be found for this problem. He told Dr. Z that Advil is FORBIDDEN. OK, we get it.

I'm feeling sorry for myself.

I am going to search down a neurologist. Maybe one of those types of doctors can help find a medication for the migraines. I don't have one of those in my list yet. It's about time. My list of doctors was getting lonely.

Lets cut now to the next part of my day: the dermatologist.

The rash/infection on gapey is ok. The cream I just started using is the right one, and it should go away soon. I told her I get quite a few rashes on gapey, and I asked her why. She said that the immune system on that area is fragile, and if there are any imbalances, it reacts. ...OK, I guess.
I made an appointment also to get a few barnacles removed. No moles, just a few nuisance bumpy things.

All-n-all, that appointment went much better.

then Robert & I went out to dinner.

Tomorrow is a new day.

Things are good; trimming down the blogging.

2011-08-29T00:40:00.000+02:00

So happy to be home. Be it ever so humble...
I've been in a funk for a week or so.

I am sick of reading my writing recently. I start a blog entry, put precious time into it, and just wind up trashing it.

Maybe that's a good thing-- it means that my themes are repeating on themselves. I hope it is that I am ready to really get into writing the book; there isn't much drawing me to need to blog currently. I think I've been waiting for this for a long time, right?

Maybe I'll just start doing short updates if there is something I want to chronicle.
I still believe that change can happen; that my situation now can and will improve. Maybe I'll finally get out of pain... or learn how to live with it as part of me.

I couldn't resist writing an entry if something big was going on. Don't worry, you'd all know. :-)

Currently:
we are tapering off the methadone to see if the side effects will go away. There are a few side effects which I am not willing to give permanence in my life. After the meth is tapered off (a week), then we'll see if these things go away.

Meanwhile, we've upped the Lyrica: 300 am/300pm. Good. I'm sure it'll help my breakthrough nerve pain.

Seeing the nephrologist (kidney specialist) on Tuesday, and I am collecting tests to have ready for that.

Seeing a dermatologist also on Tuesday... there is a skin [graft] infection on gapey.

Big visit with Professor Meller on Monday. I pray that I'll get some good options for my leg.

That's all for today. I'll write more when the mood hits. :-)

Meanwhile, I am going to try to stabilize a babysitter for my book writing schedule.

Home and away

2011-08-21T09:13:00.000+02:00

Crazy stuff happening at home,,, in my home of Be'er Sheva. People killed, people wounded. Air-raid sirens ringing out four-five-six times in one day. War is breaking out. School probably won't start on time.
I picture Emma scared and nervous, poor little thing. I know that her caregivers will give her more TLC. I really miss her... my little black mutt.

Here I am enjoying Entenmann's doughnuts (not to be found in most of Israel), a luxurious hotel at a good price (also not to be found in Israel), shopping, and visits with my family. Not in that order of enjoyment, mind you.

My last blog felt weird to say "there" when referring to Israel. In my heart it is always "here".
I feel like a fish out of water here sometimes.

How can loving parents dislodge their hugging arms to let their children & grandchildren go onto a plane to Israel when the [hugely distorted] headline news is all about where they live?

How can the Israeli family explain that being there is *home*, and that they want to be there? Most Americans think that Israelis would want to leave when missiles are flying. Many Americans think that living in Israel is not as great as living in America.

This isn't a competition.

We'll see each other in November, with the help of God.

Planes, trains, and Israel

2011-08-19T06:48:00.000+02:00

Oh, this hotel is sooooo nice.
I am so grateful to be here after huge travel ordeals we've endured. It has *not* been easy. It seems that when we finally get to our destination, we have a wonderful time. The travel, however, has been impossibly difficult. I don't want to go into all the gory detail here, but suffice it to say that it took us seven hours to get from Indianapolis to JFK airport in New York. That was, by the way, by way of Atlanta, Georga. Once in JFK, it took another hour or more to search down the luggage that had arrived there five hours before us, on the flight we were supposed to be on. They took the luggage without us.
Then after finally getting to the house in Brooklyn where we spent the one night, we got the kids to bed at 4:30am. At 9am there was a union workers demonstration directly at our windows (but involving the neighbors, not our house) which woke up the kids and Robert (but not me, thanks to my earplugs and the methadone. :-)). There were megaphones and sirens involved. Good morning.

This hotel in Long Island, however, is wonderful. We have a lovely suite which has two bedrooms, a living room, and a little, but fully functional, kitchenette (which is now Kosher :-)). Oh, and a pool. Let's not forget about the pool. Today my parents took the children to the pool while I rested. I had to sleep off a migraine. No surprise where that came from.

It's been a hard trip. (did I mention that before?)
My body, for the most part, has held up through the hardships, but my emotions have shattered on more than one occasion. I *have* had increased pain, and have challenged it many times, necessarily. That's vacation for you... walking, museums, waiting on lines, airports (oh, the airports... we have seen just too many of those recently).

Emotionally it is very hard for me to travel. My nerves have been shattered.
I used to love to travel, though. I had a true wanderlust. I wanted to see all the wonderful places in the world. I always wanted to *leave* where I was.
I am not like that anymore at all.

I live in the best place in the world; the absolute true and right place for me and my family. Of that I am sure.
I don't need to keep running. Not that this trip is about running, of course. This trip is about seeing family.
There were more than a few trips in my life that were about running from, searching for... for *what* I wasn't sure, but searching.

I am pretty sure that what I was looking for was God. I wanted to feel that "right" feeling.
I went in a crooked line, it seems.
Eretz Yisrael (the land of Israel) was home, finally. It came up upon me when I wasn't looking, actually. I went to visit with my brother who lived there at the time. It simply felt like home. I ached for it the day I returned. I spent a year aching for it. Hashem sent me a free ticket to go back. The trip conveniently was scheduled a few days after I graduated with my master's degree in Music. All I had to do was work in Israel for two weeks as a brass section coach for the youth orchestra I was working for. After the tour, they left, and I stayed. That was pretty much it.
Hashem sent me the ability to land a good job in less than a week.
I met Robert a few months later, and we became friends... well, good friends. :-)

Two years after that my roots started to grow. We got married, we started a family.

I think I miss home. I need to water my roots.

We'll be back on August 24th, with the help of God.

2011-08-16T08:13:00.000+02:00

Coming to you from a new continent... well, not a new -continent, actually, but new for my family's environment, and also our internal clocks. I am happy to say that we have all finally adjusted. It took longer than usual for all of us, actually.

We're in Indianapolis at the moment, of all places. Well, it is a good place for us; my brother, two years older than me, lives here with his wife and two children. It has been a great trip out here, we'll be reluctant to leave on our 5:30 pm plane tomorrow to go back to New York. But before we leave, we'll jam at the Carribean Cove water slide park in the am. I'm totally planning to go on a big twisty scary water slide. :-)

I'm good. As good as I was when I left, anyway, which is good.
We changed a plan here in Indy to go to the state fair tomorrow, in favor for the water park. The state fair had too much walking for me. Also the kids wouldn't be able to eat anything there, and I think that'd be a bummer. Plan and simple. I actually re-tested my walking stamina on Shabbat a few days ago, walking a bit of a distance round trip, and it didn't pass. So, with walking not high up on the list, we're doing the water park.

My eyes are falling closed.
g'nite!

Taking care of myself, body, mind, heart, and soul. In that order.

2011-08-08T00:29:00.002+02:00

I did some Yoga this morning. It was quite spontaneous; I was still in my my PJ's.
I had taken Yoga class in University when I had to fulfill a credit, and I actually remembered some stretches/moves from that. It was wonderful; waking up muscles which were begging to be stretched. I wake up so stiff. Gonna definitely keep that up.

A wonderful hour & a half massage followed. I *love* Polina, my Russian Masseuse. She understands my body... not an easy study!

Medical stuff only entered my day in the afternoon.

1. I need to organize all the tests needed for the kidney doctor (nephrologist) appointment after we return from the US. It is a million blood tests, urine tests of all sorts, kidney ultrasound, abdominal x-ray. Lots to organize.

~I did manage to actually do the ultrasound today... there was an open appointment that I jumped on.
Not the most positive ultrasound I've ever had; the technician (also a doctor) was very secretive and hinted at something in my right kidney.

Techie doc: "it's the right one that hurts, isn't it". me: "yes, why? How do you know that? What do you see"? Techie doc: "not sure". That's it, nothing else. Oh, except that she also told me to check my gall bladder tract. What does that mean? I hate the secrecy. Well, I'll see the results on Wednesday.

I made a strange slip of the tongue: I asked how is the placenta instead of how is the bladder. In Hebrew they aren't such similar words, so I don't know how the slip happened.

Probably just wishful thinking.

2. I went to my GP's clinic and got tons of annoying paperwork taken care of. Now it is taken care of, and I think I have all the dates of tests organized so it'll be ready for the nephrologist appointment at Soroka on the 30th.

3. called Prof. Meller's office to make sure the MRI disks and recent reports got to him. They were delivered by a lovely lady who was happy to do the favor. They indeed got to him, thankfully. Now I just have to wait for a call from the secretary to tell me the doctors are ready for me to come and *discuss*.

I have been leaning toward the treatment plan of a hip replacement (HR). I am sick of intense medicines which so far have not relieved me of any pain. Side effects... a few of which I cannot tolerate if they plan to stay around long-term. I have heard only such amazing stories of HR's... one story after another of success with it. I do know one woman who was unfortunate to have dealt with a bad HR and walked around on it for some time quite uncomfortably. Finally when they changed it for her, it was because her hip type was recalled. Other than that, though, everyone has a great HR story to tell me.

Of course, I don't even know if Prof. Meller will agree with that plan. We'll have to wait and see.

I have a letter from Dr. Z to take the meth overseas. It's a fairly large amount, so if I get any questions or dogs sniffing, I am protected.

That's it...

Tomorrow will start with yoga again, then a few more before-trip errands, then to the pool.

The children are doing great. They are so excited to fly to America!

They are really using up all the summer days. Every day is a care-free gift. They are just so happy.

I feel so close to them these days. Especially one in particular who has been completely opening up to me in ways that I prayed he would.

It's all part of the tikkun, you know?

My friend today told me of a wonderful idea she heard at a Torah class last week. The idea is that childhood is the Garden of Eden.

I see that in my children's eyes on these hot, juicy, lazy summer days.

Do you know what it means to see the Garden of Eden in your children's eyes?

I think I do.

So, I take care of me, I take care of them, and, as always,

only with the help of God.

My son's name is Azriel. It means 'Hashem helped me'.

2011-08-03T23:04:00.005+02:00

As summers go, this one is a great one for us. The children are happy, the parents are happy, the dog, hamster & fish are happy. (we'd all be *happier yet* if our air conditioning was fixed...)
Mommy is going swimming, and it is great for me!!!!

Next week on the 11th we take to the skies for the grand 'ol U.S of A. Everyone is *so* excited. Days are being counted, suitcases are being argued over ("I get the red one!" then, "You had it last time, now it's my turn!"), parents are trying to check things off lists. Everything in order!
We are planning many fun-filled days over there in America. We'll see my brother and his family for a few days in Indianapolis (we haven't seen them in ages). Then in NY we'll spend time with my parents, Robert's great Aunt, Robert's brother, my other brother, friends, and Target. We really hope to shop this time-- the past two times we've had no time at all to shop! The kids all need new shoes, too.

OK, it is good to always start with the things that are good. And truly, most things are really, really good, thank Gd.

First thing is that the hypnosis isn't good for me... I can't do it. It's just not suited to me.

And, if I'm almost going to talk about medicines, I want to hereby officially declare that one medicine and problem has been totally erased from my program-- the sleeping pill as well as the melatonin supplements. It feels so good to fall asleep without that stuff.

But, as we know, the fact that I can sleep well is bittersweet because it's really the Meth that makes me so sleepy. It is better than it used to be; seems my body has gotten more used to it. Although what happens when the body gets more used to it? We raise the dosage. We still are aiming to get to pain control dosage. Yesterday (Monday) Dr. Z, the pain doctor, raised it significantly. I'm sure my body will get used to it within a week.

I have been recognizing a dear price I am paying. That price is my memory for words during conversations. It's not only an issue of Hebrew/English. It happens in both languages, and it is very intense. I am constantly forgetting words while trying to have normal conversations. I 'uhhh' and 'um-a' and 'emmm' when it happens. 90% of the time I remember the word in a few seconds, but those seconds are very long for me. I have the association in my brain, and the word just does not come. It makes conversations have a different feeling. Things don't flow. It is a hard hit.
Today, I am sad to say, I forgot my son's name.
He didn't realize it; it was a situation that having another child say it was completely natural.
But I knew it. And I was shocked.

It is from the Meth. It is somehow hitting my language memory center of the brain.
And this is still considered a low dose.
I pray that it stays the way it is and doesn't deteriorate any more than this.

Would those gapey repair surgeries and the hip replacement get me off the pain meds?
There is a chance that they could leave me even more handicapped.

What can I expect long-term from the meds?
Nobody knows.

Let's wait on big decisions. I am committed to this program with Dr. Z. I trust him. He understands all the issues at hand. He listens to me well, and knows where things stand.
I will have a meeting with Prof Meller when I get back, and we'll see if he has any treatment suggestions. Worst case scenario? That he'll have no treatment to offer; that he'll tell me I can't have a hip replacement because of the NF damage, or because I'm too young. I've actually decided that if I could have a pain-free 12-15 years and then have to redo the hip replacement because it has worn out, I would rather do that than have those years with constant pain.

Let's wait on big decisions. The answers will come when they are ready to come.

I have patience to wait and let Hashem drive.

About 'lovechild' and washing dishes.

2011-07-28T01:39:00.000+03:00

I really think my recovery from NF would have been so much simpler if the PVNS disease hadn't entered the picture. Most of my pain now is from my thigh joint (or hip; same thing. Seems that Israelis say thigh, Americans say hip.) I do have pain from the mesh in my belly that is holding things in since the NF surgeries, but it isn't as debilitating as the PVNS.

I let my thoughts wander the other day while washing a mountain of dishes. I pictured this: Having a successful hip replacement, then doing the reconstruction of Gapey which is supposed to eliminate the mesh pain. Then I'd eventually be off all the medicines. It'd be all over by the time I'm 45.

Then I got my mind back to the dishes... the warm water, the soap cleaning away the food from the day... one thing at a time.

Yesterday was one of those tiring days visiting Ichilov hospital in Tel Aviv. (funny side note here- my spell checker for Ichilov says "lovechild". That'd be quite the typo! Cracked me up :-))

The trains are down again, so the bus it was.
I got there exactly on time, but it took nearly an hour before my name was called to see Professor Meller. I kept giving my seat to people on crutches, or huge shoulder casts (twice I gave my seat away). Walking the halls isn't so great, though. I have to take care of myself better in this regard... I can walk, and others can't (especially in Meller's office), but I wind up with a lot of pain if I can't sit down. I won't do that again, unless it is absolutely necessary.

Anyway, the actual appointment:

I brought with me everything that I usually need at these appointments: the most recent MRI, the MRI before that, and the payment from cupat cholim (HMO).

Turns out that Prof Meller wanted *more* MRI's. Apparently, he wanted all of them since the surgery two years ago. I was never notified that this visit is any different, and I told him that. He said that he always wants all the tests in the past, nothing has changed. Well, I wasn't about to argue with him, but I have always brought the same things, and I never got any hint that it was inadequate. So, he requested that I get the rest of the tests to him ASAP. This means hand delivery directly to his office. I'm working on the best way to do that.

Then came the physical exam. That did go like every other visit-- I can expect to walk away in more pain than when I entered. He wants to see my flexibility in the joint, so the way to do that is twist and turn and fold it until you get the boundaries of movement. The only word for that is 'ow'.

Sitting together with him in the office again, he asked about my general health. I told him about the kidney problem. He said "you have nephrocalcinosis?" "How old are you"? I answered 43. "I need the report from the nephrologist". "You should always bring any medical reports of any changes in your health. Have that delivered with your other MRI's".

We spoke about my increased pain, and the methadone. He said that since my pain doctor, Dr Z, is a friend of his, he'll call him to discuss my case.

I took the opportunity to discuss the possibility of a hip replacement. I see that as a way to get off the medicines, save my kidneys, liver, and whatever else will have to pay the price of taking medications long term.

He said that nothing is off the discussion table, but there isn't any more to talk about until he sees all my MRI's. He will give my tests to the radiograph specialist, and have a staff meeting to discuss my case. Like usual, I will get a call from his secretary when that is all over, and make an appointment to come back to discuss the findings and treatment suggestions.

I think I'll be in America when Prof. Meller tells his secretary to call me; it is usually about three or four weeks, and we are flying in two weeks. We'll be back two weeks after that, so I'll call the office then (when I return).

Meanwhile, I will wash dishes when I am not in pain and not sleeping (a small but treasured part of the day), I will enjoy my care-free children off from school, and oh yeah-- I forgot to say-- continue my meetings with a psychiatrist for hypnosis for pain control. Long sentence... but I had forgotten to tell you that. I pray that these meetings with a [very well recommended] psychiatrist work. The final goal is self hypnosis by using shortcuts that I'll learn. With the help of Gd this will work.

And while we're talking about prayer, will y'all lend a prayer to the air conditioner parts shop to get the part out to our repairman so he can FIX OUT AIR CONDITIONING!!!!!! Heat wave in Be'er Sheva with no ac in the living room for a week already. Bad news. At least we have it in the bedrooms (separate units).

Blessings to all... and to all a good night. :-)

Medical update, and the power of a dream.

2011-07-25T04:08:00.004+03:00

OK, things are looking up, Baruch Hashem.

My right foot is almost 100% healed from the sprain. There's pain with some swelling at nights, but during the days I am pretty good. Testimony that sometimes my body heals quickly and efficiently!

My left side (thigh/hip) is about the same... same amount of pain & inflexibility. I am going to Prof. Meller in two days, Tuesday, for my six month MRI appointment. This is the MRI that said that there is slightly more fluid in my joint compared to last time. While I'm sure that this condition is what is adding to my pain, I'm also pretty sure that he will have nothing much to say about it. What can be done, really... needle aspiration to get the fluid out? Not a great idea for a joint that has had so much damage already. Every procedure on that joint puts it in more danger of other things; infection, for one, and increased pain is always a possibility. But, what if aspirating the fluid out of the joint could relieve my pain? Even temporarily? Well, I'll discuss it with him. I don't feel too optimistic that he'll be able to recommend something in this case. We'll see.

I saw my pain doctor today, Dr. Z. He told me I should send regards to Prof Meller from him. All these fantastic doctors, they all know each other. :-)
Aside from that, I was happy to be able to report to him a much better week. I felt much less like a zombie, and was much more productive. I returned to swimming (after the sprain), and had a good few days that I didn't need to rest in the middle. I got caught up on all the laundry (which was really stressing me out!), cooked, and got errands done.

But the pain in my thigh and my belly from the mesh is still there, taking away my attention from almost every task I endeavor. (I had to excuse myself from a lunch date with a couple of very special women because I was in too much pain. I had been squirming around for an hour, and I couldn't take any more). So Dr Z said to start to raise the dose again. If I feel any heavy drowsiness to call him... it may be to wait it out, or to go back to the lower dose. I am very eager to get to a dose of the Methadone that will be effective for my pain. B'ezrat Hashem.

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

One of my really awful Meth dreams happened yesterday during a Shabbat afternoon nap. It was especially violent, disturbing, and grisly. I was powerfully shaken by this dream.
When I woke up and did the ritual washing of the hands after a deep slumber, I still felt --polluted--.

I opened a prayer book and read the prayer that one is to say to ameliorate a bad dream. It reverses the intent of the dream. One is to say "I had a good dream. It was positive, and it's elements will be for the positive in the world." (it goes on like that. It's really very deep.)
That helped me a bit, then I started to talk about it with Robert, and he helped me figure out how we can see it for the positive.

I described the dream without any of the gore or hideousness. Robert helped me to see how it may be paralleled to my battle with NF. This is how it went in the dream, and how it can be paralleled.
The numbered text is what was happening in the dream, the italics is the interpretation.

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

1) I did a good thing that I thought would benefit myself and my family.

got the hernia surgery in order to have another child.

2) Turned out that good thing had a very high price with it that I couldn't have known.

necrotizing fasciitis

3) The bad guys made our lives miserable.
(interestingly enough, the 'us' in the dream is me with another team of people I know-- *not* my family, thank Gd)

that is the grisly horrendous stuff. You will thank me for not detailing that.
It is likely representative of how life was with NF.

4) at risk of life and limb, I and my team killed the bad guys, one by one.

my doctors and I killed the infection, risking life & limb.

5) I was safe, but I knew that others who had done the same thing [at the beginning of the dream] are in the same danger. There were many more bad guys out there. In the dream, I actually saw them out my window doing the same thing, and watched others fall into the trap.

I took it upon myself to keep killing the bad guys (in *awful* ways), and to tell everyone about their hideous scam.

I couldn't make sense out of this part--

why would I keep going after and murdering these bad guys,

and tell everyone about it? After all, we were safe.

Here is where my husband came up with the beauty I needed to hear:

"that is your book, Sarah".

A pictorial essay of the blessings in my life

2011-07-21T03:17:00.000+03:00

Dov at camp Amichai 2011

Klein brothers in Dov's bunk

"Ma'alot"- Dov's group at camp- he's second from top row, second kid in from the right- red shirt

Hangin' on the bunk

collecting shells at the beach front across from the camp

Shifra, always ready for a pose :-)

Waz & Ya'akov take to the Eucalyptus tree at camp

not the *best* picture of the gang, but that's ok.

Me & Marshmallow getting to know each other

me & Marshmallow groovin'

huts and lake

More mud city-- but so impressive-- each level is hollow-- they built foundations with sticks and then the walls. There is a ramp to each level. I want to put candles in there to light up the windows...

general view of the city as it is *today*... what will be tomorrow, nobody knows...

Another of Ya'akov's architectural prowess- 'Kapla' blocks... those side wings have no base on the floor.

This structure, held in the air by TWO FINGERS. Pretty impressive engineering for an 11 year-old, right?

Outraged at pain

2011-07-19T00:46:00.001+03:00

I have been known to say:

"I wouldn't change one day of what has happened to me over these past four years since NF."

I hereby retract that statement.

It was my way of saying that everything is exactly the way it is supposed to be.

That all the really bad stuff that happens is for a higher purpose.

Well, you know what? Sometimes things happen that were *not* ordained by Gd Himself.

Today I learned from a good friend that the Rambam (13th century commentator on the Torah) said that not everything is predetermined.

Certain things happen because of chance.

(thank you, K.)

I am bitter that I had NF.

It put me in a state of near constant pain, years afterward.

Probably for the rest of my life.

HEAR THAT??

The *rest of my life*.

Pain. In many different areas.

Drugs

ALWAYS.

I was in a fog the whole time during visiting day at Dov's camp (but I think only I knew it. I hide things well). The day itself was beautiful, and my son is doing great... with his tan, his tie-dyed shirt, his non-stop talking about camp stuff. His smile. Thank Gd for his smile. It's just like his Dad's. :-)

My fog didn't lift. I slept whenever I could (in the car). We got to Modi'in for Shabbat, and I slept. And slept, and slept, and slept. I missed out on quality time with my in-law extended family because I slept through it.

Sunday I had to get up for an appointment with my doctor (follow-up on the sprained foot). I tried my best to fight this thing and stay awake for the rest of the day. I wound up with a raging migraine.

Often it's the kind of sleep that is laced with very vivid, strange, often violent and unpleasant dreams. They are like dreams in a twilight sleep-- like you know it's happening, but it is impossible to wake yourself up. It feels sort of like an anesthesia, I wake in the exact position I went to sleep in many hours before. When I do wake up, my limbs are heavy; I'm in such a fog, I only want to fall back to sleep.

That is how I sleep so long.

Dr. Z (pain Dr) said "it's the methadone". All of it-- the long sleeps, the fog, the crazy dreams-- all from the methadone.

Sad part is that the meth isn't yet helping the pain.

We are going to stop raising the meth in the increments we have been. He wants a week of "leveling out" as he said (continue taking the same dose without raising it this week). My body has to catch up with it. After the week, I'll see him Sunday (I see him every Sunday), and hopefully report some more waking time without the fog.

He still believes that the methadone can effectively help with the pain. We have to get up to a higher dose, but --s l o w l y.--.

Dr Z. has a long-term plan of eventually lowering my other medicines, then cutting them out completely, leaving the methadone to cover the pain.

I am OUTRAGED that my life turned on a dime;
that plans for another baby turned into an insane MESS.

I am on METHADONE, for crying out loud.

My EVERY DAY revolves around the WORTHLESS PAIN and trying to get rid of it.

So, the "I wouldn't change a day of it"?

It's a crock.

Rumpelstiltskin takes to the road

2011-07-15T01:49:00.000+03:00

I am here... don't get worried!

I have been either sleeping like nobody's business, or trying to do a few outings... oh, did I tell you I am walking without the [@#$%*^] crutches? Praise the Good Lord in the Heavens (and all around us, and in my heart, but that isn't where I'm going with this, just couldn't help myself).

SLEEP-- you would be *shocked*. I am. Sometimes I sleep the entire morning until like 1 or 2 (or 3, but that is so embarrassing to write). UNreal. This foot thing has really thrown off my delicate balance of activity/sleep. Not that it was so balanced to begin with. I think between crutching around, which is *so* tiring and painful for my left hip joint, and the fact that my body had overtime healing to do, and the fact that I went to two weddings and a bris last week... well, yeah, sleep is the only medicine for all that.

I am starting to get back my energy, and walking...well, shuffling, mostly, but getting around without aide of any sort of apparatus.
I went swimming once this week, but my foot hurt. Gonna wait a bit more for that.

I am still sleeping tons. I hope it passes. It's *not* OK. My dose of the Methadone is gradually increasing in very small increments. I still don't have any pain relief from it; it may be another few weeks until the proper dose is reached to effectively help with the pain. But if this medicine is responsible for my need to sleep half my daylight hours away, I don't think I can handle that. I prefer the pain. I need to be *in* my life, not a passive bystander. I am in good communication with my doctor-- I see him every Sunday. It's hard to know at this particular point if the sleep is because of my sprained foot healing, or the meds. We'll need some more time.

One thing is clear, I no longer need my sleeping pills. I'm totally off them for about a month now. Yay, woo-hoo! Triumph, indeed. Four years of those things, and I'm off them. Baruch Hashem. One less drug in my body. I weaned myself. It wasn't hard, actually. I went down by breaking the pill into half, quarter, then nothing. One day of a headache, and we're good.

While we're on the topic, I need to be going to sleep *now*.
In the morning we leave to drive up north for 3.5 hours to visit Dov in sleep-away camp. Remember last year when I couldn't go because I was recovering from my surgery? Remember that my heart broke into a zillion pieces when I heard him crying on the phone to me because we weren't there (and he didn't *know* we wouldn't be there)? Well, we are headed up North tomorrow. I got off crutches just in time. I can't *wait* to see him-- I miss him so much! I am desperate for the tikkun.

Then when we leave the camp, we will be spending Shabbat in Modi'in with my brother-in-law & sister-in-law. Looking forward to that too... I hope I will be OK regarding my sleeping needs.

I remember when I was in sleep-away camp, and when my brothers were, my mother would always make her delicious chocolate-chip cookies to bring and leave with the camper. There were many, many years of camp visiting days that I remember, mostly visiting my brothers. I loved those days... care-free summer days, road trip to northern New York state, walking around and playing at the camp with my brothers, seeing the cool bunks, the lakeside, the picnics. Oh, and Ice cream from the 'canteen'. My father took lots of pictures, my mother made albums. I wore red canvas Keds sneakers. Life was simple. And healthy.

Well, I didn't get to baking cookies. I barely got to get my children who *are* home fed properly! Standing is still not a simple task. My mom was a strong lady. I am too, but in different ways. So, no home-made cookies for my well-loved son, but at least we will *be there*!! I'm looking forward. And I do have a box of his favorite granola bars...

The wheelchair chronicles

2011-07-07T20:55:00.004+03:00

So far I've been to two weddings and a bris in my crutchy/wheelchairy existence. I sprained my ankle in a particularly busy week with people getting married and having babies, Baruch Hashem. Well, BH that there are so many smachot (celebrations), not that I sprained my ankle, of course.

Turns out that the crutches are *really* hard for me. My hip that has been hurt by the PVNS just cannot take all my weight. Crutching around is very painful. So, I go into the wheelchair for relief... not many other options. I use the crutches only when I have to. Getting up from sitting, using the toilet, getting dressed, it's all SO challenging, you can't imagine. If my un-sprained leg was healthy, it'd be challenging, but with the bum hip, wow. It HURTS.

So, on the ground level of our house, and outside when I can, it's wheelchair.

I am learning a lot about people in wheelchairs that I hadn't learned in my previous wounded conditions over the years.

First of all, the world is *hard* for people in wheelchairs. Even those "ramps" on the sidewalks are hard to get up because they build them with a little 'lip'. Once, even though Robert was just parking the car and he'd come push me in a minute, I decided to try to get myself up the ramp as if I had no assistance. It was nearly impossible. I first turned the chair backwards to go back-wheels up first. I got half way up at that point and the wheels started skidding in place. In the end, I wound up using my left leg to push a little to get myself over the hump. NOT so handicapped friendly, indeed.

Then there is the issue of being in a public place. Everyone *stares*. It is uncomfortable to be looked down upon, even though it is just a matter of simple physics that people have to look down to see you. It is a whole different perspective. The one in the wheelchair winds up *feeling* looked down upon, even though it's just a matter of physics.

The other issue is that many, many people want to push you as a way to offer help. I find that I prefer to push myself, rolling the wheels manually. I let people push me because they want to help, and I think it is really hard for them to be with a person in a wheelchair. To a walking person, the person in the wheelchair looks like he/she needs help. Usually, he/she doesn't. What I really would rather do is roll beside the walking person and chat like normal. But, being in a wheelchair isn't normal.

At one of the weddings, I let different people push me when they offered, even though I didn't need it. It got annoying. 1. I couldn't talk to them because they were behind me. 2. It made me feel more handicapped. 3. I got 'put' into places where it wasn't my comfort zone-- like too close to people; they could hit my bad foot unintentionally. I'd have stopped further away from people.What happens is that people pushing the chair stop in the space they would've stopped in even if they weren't pushing the chair. That makes the person in the chair *too close*. The body space of the wheelchair person winds up being encroached upon, albeit unintentionally. This happened many times.

There were fun times at the weddings, too. At the one last night my friend put me into the middle of the circle of dancing and I "danced" (read: held hands and rolled back & forth) with my dear friend, the mother of the bride. Then when the dance floor cleared out a different friend pushed me really fast in a big circle around the dance floor (behind the separation where women dance-- nobody could really see unless they were in the women's dance section at the time). I was havin' some flyin' wheelin' times. (I really hope it's not on the wedding video!)

Anyway, I learned some important things about handicapped people. Treat them as if they can do everything, and help them only if they ask, or if you see them struggling. I know it's hard not to offer help, but personally, I didn't want the offers.

And if you do wind up pushing, be sensitive to stopping farther away from the target than you feel is normal, because you have someone in front of you. Also, if you feel the person in the wheelchair using their wheels to slow down or move a bit, let go of your grip and let them move. Most people didn't realize when I was trying to move myself with my hands on the wheels.

There is one thing I do like about being in a wheelchair... I am eye-level with my kids. :-)

For my mother

2011-07-05T06:55:00.000+03:00

She is far, far away
Her daughter lies in bed with a sprained ankle,
not so serious.
The mother feels the pain for both of them.

She came once, a long time ago,
and looked from above at her daughter in a hospital bed, fresh out of a coma
(now *that* was serious).
She held her hand and her daughter soaked up the feeling of her mother's hand
over her own.

This daughter has been through hell.
Her mother listens on the phone, each time it hurts.
Her mother suffers as well,
for she is far, far away.

"Mommy", "it hurts".
So, so many times in recent years,
over the phone.

For every physical pain the daughter suffers,
the mother has the equal measure of emotional pain,
for she is far, far away.

"I want my mommy".
It's a primal thing,
not based in reality at all.

The daughter has children of her own.
She kisses every boo-boo,
she lets the tears of her children soak into her shirt.
She cannot endure the palpable sense of helplessness
that a mother suffers
when she has to be far, far away
from her child's pain.

Her daughter's pain.

"I want my mommy".
Each illness,
each surgery,
each knock down.

The mommy? ...she wants her daughter, too.
She wants the tears again to soak into her shirt.
We feel the same.

It's just a sprained ankle.
But I want my mommy.

(Dad, I love you, too, forever, with all my heart... don't feel slighted.)

And now both sides hurt!

2011-07-03T05:16:00.000+03:00

I was going to write about something specific tonight, but that'll have to wait.
Immediate medical events trump needing to write about trying to resolve already existing medical issues...

I sprained my ankle today.
Boohoo!!!!!!
I twisted it and fell while walking home from our friends' house, where we'd just had a lovely Shabbat lunch together. There was a minor crack in the road, and I twisted my ankle on it somehow.
Later in the afternoon it started hurting so much more, I actually was convinced I had broken it.

We went to the ER at Soroka... all too familiar. I should take out a monthly subscription, it'd come out cheaper.

They took x-rays, and proclaimed a sprain. Wrapped it up in an ace, told me to stay off it for a week or so, and sent me home.

So now I am home, and EXHAUSTED. And in so much pain, most of it, believe it or not, is not from the ankle, as one would think (Percocet at the moment is helping with that). Rather, the pain is emanating from my left thigh. The sprain is the right ankle. I can't lean and put pressure on the PVNS leg-- the hip joint can't take it well. At one point I tried to hop, with Robert supporting one side of me, but that is totally out-- hurts way too much. That hip don't hop. (!! never thought of that before! hip-hop!:-)) So, all fours was the only way to go. I went around the house that way getting to the bathroom and whatnot, and scooted down the stairs on my tush (I've done that after each surgery, I'm a pro). Scooting upstairs, however, uses lots of thigh muscles, and gets right into the middle of the joint.
Getting to the car was with Robert supporting me on one side, and *Dov* on the other side-- he is a strong kid (BH), and getting close to my own height-- and using only my left leg. It HURTS. I'll need crutches, but also a wheelchair. Spending lots of time with the crutches will put too much pressure on my left leg. It can't take that.

Well, It's temporary. I just hope I don't do damage to the hip joint while I am trying to let the sprained ankle heal. Or, that I put pressure on the ankle too early because I am trying to save the pain from the other leg.

Of *course* they have to be opposite legs. Murphy follows me wherever I go... he stalks me, actually, I am quite sure.

Going to sleep-- I'm wasted.
Tomorrow I am supposed to see the pain doctor at 5, don't know if that'll happen.
We actually have two weddings and a bris this week. And Dov is getting off to camp on Wed morning for three weeks. Not the easiest week to deal with this.

But again, we aren't the ones making these decisions, are we.

May we all have a good week. Any brachot getting thrown my way for a speedy healing would be quite welcome. Sarah Rachel Bat Tova.

The end of the school year , 2010-2011

2011-07-01T19:36:00.000+03:00

School is finished. We made it through another school year!
All week I have been kvelling (feeling inordinately proud) over the achievements of my children, and all the ceremonies and productions I sat watching. It is such an honor to get to be a mother to these particular children.

Dov was a policeman in his grade's production on stage. It was a play about a boy who has to deal with people saying bad things about him because his father went away and left a debt with his shul. The boy had to learn to trust in his father and not be influenced by the other children teasing him. His father would call and strengthen the boy's emunah in Hashem, and tell him that there is nothing dishonest going on. The boy continues to endure teasing and taunting about his father being dishonest, and leaving him.

The boy ran away. He slept in the street near the shul, which wasn't fully built because of the missing funds which people thought his father was responsible for. He slept at the half built shul and became very depressed. The police came out looking for him (Dov and another kid were the police). They found him, and had to convince him to come home and that things aren't as bad as they look.

They brought him home, his mother was so happy (it is a boy's school-- the mother was a boy dressed up in a dress-- very funny!). His father finally came back, and the story became clear, and the other children in the school yard stopped teasing him, and befriended him for the courage he had.

It was a story of emunah. It was a story about believing in your parents and honoring them, even when it looks like they may not be doing the right thing. It is about not knowing the other side of the story, and not jumping to negative conclusions about someone. it was about trusting Hashem. That is the play my son's grade put on (refer to the italics part after the picture to find out who wrote the play). Here's a picture of Dov on the stage of the play (not in police costume yet):

Dov, before the play, standing near the "wall" of the stage. It says: "you shall go forth in joy, and you will be carried in peace." (it's from the book of Isaiah, 55:12)

On to junior high for him... he has completed elementary school, second in his class. Nachis!!! (a parent's pride in their children.)

BTW- the play was written by a boy in his class. Yup. And that boy played the role of the main boy in the play. Isn't it tremendous that the school gave such honor to a child as to preform HIS play that HE wrote in front of a courtyard FULL of parents and siblings, as well as very important Rabbanim (Rabbis)? The message is to give honor to all people, young and old. I feel so abundantly blessed that my kids are learning this way.

Shifra's grade put on a show which enacted the book of Bereishit (Genesis). It was *wonderful*. Her part was a man's part, so she wore a kippah and tzitzit. She was Naftali, one of the sons of Ya'akov Avinu (Jacob the forefather). She played in the scene where they put Yosef in the pit (the girl who was Yosef was so good). It was intense to see a bunch of second grade girls have such a deep understanding of the story. I honestly got welled up with tears at one point, hearing the songs about Avraham coming to Israel, our Gd given home. I have no words to describe what it is for an immigrant (me) to listen to my childrens' every-day schooling about Gd having given us this land to live in and populate. They know Torah and understand very deep concepts that I only started to learn at age 26.
Second grade. Finished. On to third.


Shifra standing next to the backdrop of her 2nd grade play. The figure of a man is meant to be Avraham, and the Hebrew says "Chumash Bereishit", meaning "Genesis" in the five books of Moses.

Ya'akov didn't have a play, unfortunately. In his school this year, only the 6th grade classes did plays. He is going up into 6th. I don't have any pictures of him this time. But I am inordinately proud of him, too. :-)

Azriel had a little play in his gan. It was *sooooo* cute. It was about the seven days of creation. The children this year learned what Hashem did on each day of creation, and all the beginning of the book of Genesis. Five year olds.
He was "day one". His sign that he is holding here says "the first day", or "yom rishon".

Mr. Yom Rishon. :-)


Azriel, "day one", with kids around him singing about what Hashem created on day one (separated light from darkness)

A few weeks ago, Azriel asked me about the monkeys who looked like mankind which are in the encyclopedias and science books we have. I found myself talking with my five-year-old about what the sages taught us about creation in reference to the the theory of evolurion. One day in the Torah story of creation could be thousands of years. All those animals and evolution did happen, and we don't know what a "day" means in Torah language. Millions of years seem to have passed in the one day the Torah describes.
This conversation was with Azriel. He asked more and more questions. I had suitable answers, thank Gd.

One day these kids are going to ask Torah questions that I cannot answer. I already have a hard time helping Dov with his homework from the holy subjects (regular subjects I can still lend wisdom, thank Gd). When I help Ya'akov, I find myself slogging through mishna and Torah commentaries that are completely new to me and hard to decipher.

May Hashem continue to grant them wisdom in the next year of learning.
And may Dov get off to sleep-away camp on Wednesday safely and have a great time (unplugged for three weeks!!!)

I am looking forward to the days forward of more relaxed schedules and no homework.

We did it.

And wow, am I one proud mama.

What a long, tiring week it's been. (with lots of good sprinkled on top)

2011-06-28T01:08:00.000+03:00

There have been so many great connections with the children this week that Robert has been gone. I love that they feel free to rely on me, after all we've all been through. Being pulled in four different directions at once is challenging, though, without that extra person around to give some lovin', too.

That being said, this week has been hard on my pain areas. It is a proven fact that more more sleep=less pain. I am not getting enough sleep for me. Maybe for others it'd be fine. But wow, my thigh joint has been just so painful. The mesh area of my belly is also very sore.

I am raising the dose of the methadone, slowly, until I start to feel pain relief from it. 'Staying the course' with the [high] dosage of Lyrica I have at the moment. For the time being, I don't feel anything at all; not side effects (great), and not pain relief. The doc (Z) said not to expect pain relief at this dose. It'll be raised incrementally this week, then I'll see him next week to see how it's going.

////]
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\ (I narcolepticly fell asleep there....)

iI am clearly way too tired to be trying to write something coherent. My days are long and so incredibly busy. There is never time to stop.

I know now that I don't have chronic fatigue.
I just have plain old fatigue.
There is *no way* at all if I had true chronic fatigue that I could've done all the stuff that I do in a day.

The stuff I do... with pain in every step and every bend.

g;nite Looking forward to Robert coming home tomorrow.

Head stands and watery joints

2011-06-24T00:48:00.000+03:00

I bought this great white whale of a U-shaped pillow for me to put in my bed when I read or write in bed... that'd be lots. But it is so comfortable that I have been falling asleep at the keyboard. Well, it could also be the fact that Robert is gone and it is all I can do to keep up with the kids and the house myself-- I'm exhausted.

I am just going to give a really short update before my eyes heavily shut down for the night.

I did a head-stand today. We all did. There are pictures to prove it!

Shifra's & Ya'akov's head stands

Wazi's head stand


Me.... on my head. (thanks, photoshop for fixing the modesty issue!)

I haven't done that since high school, probably. My kids keep me young. :-)

As I told you, I am eyes-heavily-shutting tired, so I'll cut to the next point of interest:
The recent MRI report:
The amount of fluid in the thigh joint has increased in comparison to the MRI of five months ago. What does that mean? Well, it can certainly account for the increased pain I have in the joint. Anything to do about it? My GP says no, just wait and see. I'll now pass it onto Prof. Meller and see what he'll say in July at my next appointment.

singing the blues

2011-06-20T00:07:00.000+03:00

Mourning...

I *don't* want to whine... I don't want to be perceived as whining. I know that my brachot are tremendous. But can I please just say how I really feel these days?

I actually cried the other day about not ever having another baby. I thought I was past that, really. The combination of the accidental home birth that I delivered the baby, and then holding a dear little muffin of a two-month-old the other day just made me yearn. Really yearn, like something died. A hurt, an a c h e.
I was talking to Robert about it, and he admitted that he feels, sometimes, that there was supposed to be a fifth soul in our family.
Hashem knows what is right for us, and has blessed us beyond measure with our children.
But sometimes... sometimes... I want another baby so much that it hurts my heart.

I am mourning these days, for the life I had without pain.
I have no memory of that feeling.
I will never again be that healthy person with the near-empty medical history sheet.

I started taking Methadone. So far, no negative reaction, no positive action. It'll take a while for it to build up in my system in order to reach maximum dosage. I am following the doctor's plan-- he wrote me a 10-day plan for when to raise the dosage, and then I'll go back and see him on the tenth day. It'll need to be raised another 2cc's at that point to reach the dosage that Dr. Z wants to start at with monitoring whether or not it helps my pain. If yes, then we lower the Lyrica. It's all very scary to me.
You know, I cried with Dr Z... I don't often get people who really understand what it means to live with pain.

I have also started to investigate hypnosis as a way toward pain control.

Look, I'm an NF survivor.
I have lots of nerve pain from that, and from the mesh put in my belly to keep my innards in.
I also have a rare disease in my thigh, and even though I had surgery to remove the diseased part, I am left with pain.
That whole left side hurts, one thing or another, most of the day and into the night.
As far as I know, nothing can be done about it.
(tomorrow I think I'll get the MRI report about it to see if it is growing back)

And the last thing... Robert is going to America on Tuesday for a week. Thank Gd it is for a simcha (celebration), but I'll miss him, physically and emotionally.

I apologize if this seemed whiny. I am not a whiner. In fact, most of the time, people don't even know that I have any pain or troubles at all, by looking at me and talking to me superficially.

It's just mourning. It's healthy, and we all mourn. Communal mourning is better... so here I am being communal with you. :-)

"Sarah, you don't have to be in pain."

2011-06-17T18:09:00.000+03:00

Nobody has said that to me in this whole four years.

I told Dr Z, the pain specialist, with tears rolling down my cheeks, that I didn't actually believe him. That there hasn't been a day in over four years that I have been without pain.

He is a gentle, special soul, this doctor Z. I had seen him two years ago before my PVNS surgery, and at the time he suggested I start with MIR- morphine immediate release. I took the dose, and it was terrible for me; the room didn't stop spinning, and I felt awful until it wore off. After that, I didn't follow-up like he told me to. I decided to wait until after the PVNS surgery to see if it relieves the pain.

Then I just let the whole thing go. It wasn't the right time for me, things were so unstable still.

He remembered me, saying it is not possible to forget a case such as mine.
Again he listened completely, and I feel he really understood me and the day-to-day struggles I face with pain. I even explained about the migraines and the "Rizult" migraine medicine I tried yesterday.

After getting it all out on the table, he made his first suggestion for a pharmacological plan. Again, Dr Z. was boosting my optimism about finding a solution; he reiterated that pain control is far from an exact science. If one thing doesn't work, we can try another. We need patience, but we *will* find a way out of pain. I had heard him say that two years ago, but I wasn't ready to admit that my pain will last long enough for us to do lots of experimentation to find a solution. I wanted to believe that taking out the PVNS tumor would solve the problem.

Pain is a hard thing to accept when you are thinking about long-term. You want to believe that what you are feeling will not really be long-term, and the pain you have now will go away on it's own soon enough. It's like, admitting you need to take care of something is to first admit that it it *yours* to take care of.

Well, this pain is mine to take care of. We're joined at the hip. (got it? joined at the hip... got it? hehehe)

So we are starting a regimen of Methadone as pain control.
I have never taken that, of all the narcotics I have taken. He said that if it works for me, we would eventually lower the Lyrica.

I learned some interesting things about Lyrica, too, from him. Apparently, it is a medicine which is released into the body by the kidneys. It isn't processed by the kidneys, but they deliver it. So, if there is lowered kidney function, the Lyrica will not get into the bloodstream as effectively. Then you'd have to raise the dose. Hence... me.

I had to go all over town to different druggists to find this Methadone syrup. Robert and I were having a bit of fun with the scenario that I was drivin' all over this city lookin' for my Meth. :-)

We are starting on a very, very low dose. He prescribed the liquid form so we can control it carefully. Dr Z wrote me a schedule of when to raise the dose and by how much.

I took one cc today. Didn't taste too bad, and I didn't feel any effect from it at all. He said I wouldn't, but we are just building up to an effective dose.

I am going back to see him in ten days for an update.

Like a near-sighted person strains their eyes to see without their glasses, I struggle to believe that one day I could be out of pain. I can barely make it out, it's so blurry. But there is something there. Some grainy form of pain-free optimism.

Even as I wrote the words "pain-free optimism" it felt just... fake. Like I was writing something entirely fake.
Well, as they say, "fake it till you make it"!

To every action, there is an equal and opposite RE-action.

2011-06-16T18:42:00.000+03:00

Baby and mommy are doing great, Baruch Hashem. :-)

I, however, didn't have the greatest day in the world, but it's not so bad.

Remember a few posts ago (this one) I was talking about the new migraine medicine my doctor gave me? It was a cousin of the one I am allergic to, and there were no other choices considering my kidney problem. Well, it scared me to take the new medicine. I resisted.

Last night a migraine was coming on. I didn't want to try the new med because my doctor said to try it first at the clinic just in case there was a reaction. So, the clinic being closed at night, I took a mega dose of Advil (aka: kidney 'poison'), as I have done so many many times before. But this time it didn't help.

I got to sleep finally with the sleeping pill, and slept through the night. I woke in the morning, early, with the same headache! Oof! I tried to go back to sleep, but it didn't happen. I tried a cup of tea and a muffin, and that didn't help either. It started getting worse, and I *know* where that goes.

So, at Robert's encouragement, I called the clinic to see if they were open long enough for me to come in and try this medicine. I called at a time that they were closing... but my doctor said she'd be around for a while, so I should come in.

I got there, took the medicine, and laid down in the nurse's office. Pretty quickly my throat started to swell. I told the nurse, and my doctor also came in. She looked in my throat, and saw the swelling. My blood pressure was good and my breathing was fine. We waited. Throat swelled more with more time passing, then my lips started tingling. I am so familiar with that feeling-- I am allergic to so many medicines that I have felt this all before. But this time, my chest wasn't tightening. I was very nervous that it was going in that direction, but the doctor and nurse were monitoring things, and had the shot of steroid ready if necessary.

In short, it didn't get worse than that. My throat stayed swollen, lips stayed-a-tinglin, but the buck stopped there. We waited it out for about an hour and a quarter, and the reaction didn't progress. The positive side to this is that it took the migraine away. Praise the Lord.

My doctor said that when the next migraine comes, she wants me again to come in to take the medicine. She said we never know where these reactions are going; could be next time is worse, the same, or no reaction at all. OK, but I hope it's not at night.

Spending the morning in cupat cholim wasn't really in the plan, and I missed my swim today. I am also exhausted; probably from the medicine, or the migraine, or just because I'm exhausted.

I am going to get myself together anyway to go to this wedding-- it's the son of a very special friend, and I wouldn't miss it unless I *really* had to. It is in Be'er Sheva, which is good if I want to go home early and Robert wants to stay.

Tomorrow morning I have an appointment with a new pain doctor, here in Be'er Sheva. He has been highly recommended to me for a few years now, and I finally got my act together to call. He gave me an appointment very quickly, in comparison to how long people have to wait to see him (I have protectzia with his secretary:-]). I want to discuss the high dose of Lyrica (which, BTW, the added pill is working to help the pain from the mesh surgery, but what if that, too looses it's efficacy like the lower dose eventually did?), and to talk with him about if he thinks it's preferable to do the reconstruction surgery with the goal of lowering the Lyrica. I'll go into the whole thing about what the surgeon said about the mesh, etc. Also very important, but separate from the Lyrica issue is how to deal with my thigh joint pain. I know that the doctor in Jerusalem only had one non-narcotic recommendation, which is an orthopedic procedure to inject synovial fluid into the joint. It seems very iffy to me, and I'm not enthusiastic to get a shot into my already abused and fragile thigh joint. But, it hurts, and it'd be great if it didn't. Incidentally, I have to still get the results of the last MRI; we don't yet know if the PVNS is growing back or not. Then it's back to prof. Meller in July.

I'm going to take a long, warm shower now, and get ready for the wedding. Gonna get all pur-dy'd up. :-)

Shabbat Shalom!

(I may write tomorrow after the pain specialist appointment, or it may have to wait. We'll see... never know how Friday's will develop around here...)

Beaches and babies

2011-06-15T01:07:00.005+03:00

What do I tell you about first?
That I took my kids to the beach in Ashkelon on Friday?

...ok... that's first...

Robert cooked for Shabbat, and I took off with the kids!

I so deeply have a need sometimes to see the ocean.
It is bare, uncluttered testimony of God's control of the world.
I go there to release my attempts to manipulate His control.

Watching God control the world calms me; settles me.

What is *un*settling, though, is watching after four children at the beach with only one pair of eyes! And when those eyes were in the water (in the water more than out), they don't have glasses to help them see little offspring who went springing off. Not to mention the near-coronary-heart-failure I had when I couldn't find eldest offspring for an uncomfortable amount of time. I took my small kids out with me quickly and jogged back to the blanket to get my glasses... and there he was, assuaging his 12-year-old-boy appetite with a sandwich. Lord bless him. And give me mercy.

A good time was had by all, and the only one of us who got a bit of a sunburn was... me. I forgot to put cream on myself. The children all had basically one foot in the ocean-- waited barely long enough for me to cover every inch of their exposed skin with sunscreen #54, only like a true mom with OCD can do. Then I had to heed the call to go in with Shifra and Wazi. "Call" may not be the proper word here, lets check the thesaurus, hmmmm, let's try: pulling my arms and demanding. There, thanks to the good ol' thesaurus again. :-)

Then, of course, as no trip to the beach is complete without, everyone got over-priced ice cream. Slurp!!

We made it there and back with not one child insulting or instigating another. Alert the presses... history has been made. It was a purely wonderful day, thank God.

Now the next thing to write about... another feat of endurance and keeping-cool-under-pressure... wait let me interrupt. I just want to clarify what is so special about feats of endurance and handling pressured situations. Because for most of these past four years, I couldn't do that stuff. I was scared and insecure about my abilities- grounded with good reasons- physically, and emotionally. Those things have been taken apart and rebuilt in different forms now. Physically my pain is largely under control. If I walk the way my thigh joint wants me to walk, we are good together. Emotionally... well, the PTSD has come a long way from those three weeks I spent at the psych hospital three years back. I have built up more confidence in my ability to take care of my children. Again, not 100%, but taking them on a beach trip myself shows lots of belief in myself that I can do great things with my kids without a back-up.

Ok, I am getting so tired now, if I don't write about this next thing, I'm gonna fall asleep with the laptop on my lap. Wouldn't be the first time.

So yeah, I delivered a baby last night. Did'ja get that??! I DELIVERED A BABY LAST NIGHT, FOLKS! Myself. The ambulance was called, but I got there first and the lady was already pushing. It was just so fast.

(Mom & Dad- remember our conversation last night where you said to me have a good night sleep, and I said it isn't to be taken for granted? Well, I didn't realize then, but it'd be 5am before I got to sleep!)

The husband called me at 1am. Now, I knew her last birth was only two hours, so I knew that when they call, it means *jump*. This was the fourth birth.

So, I quickly got out of bed (spinning with the efficacy of my sleeping meds!!) and dressed. By the time I was almost out the door, it was 1:15, and he called again. He said the contractions went from 5 mins apart to one minute apart, broken water and pushing. OK, I told him I am out the door. Please bring her down stairs and I'll meet you at the sidewalk and we'll get to the hospital. To which he said "she said she isn't going anywhere at this point".
I said to call an ambulance, and I got there in 4 minutes; fortunately they live nearby. The husband was so relieved to hear me coming up the stairs. I came into a scene of a birthing woman on her knees on a couch, an elderly Hungarian mother who knew no Hebrew or English standing in shock like a statue, and the husband, trying to deal with all three of their little ones who were, at this point, WIDE AWAKE.

Funny thing is that the mother and I had drawn up together an index card of affirmations that we will tell her, or she'd read during the birth. At this point the only affirmation available was "I'm going to help you take these pants off, we're going to have a baby". I washed, put on gloves (which I always have in my bag), and felt for the baby's head, which I found poised on the precipice. A few good pushes and we had half the head out. Her other three kids were upset, their mother was yelling things. I had the baby's head on my hand, and turned around to tell the girls that "mommy is OK, not sick. Her body is doing exactly what God created it to do, have a baby. It's hard to have a baby....."(trailed off). Then came another push. A screaming one, and we had the whole head in my hands. Still no paramedics. Good thing nobody was dying up there! What's the deal with how slow they were????

Baby girl was born blue and pink and a good strong cry was heard around the town. Thank God!!!!!!!!!!! But have you ever tried to ask an elderly Hungarian woman to bring towels and warm water and blankets? Or better yet, hear a birthing mother with the head between her legs translating so that her mother will bring me these things... complete with telling her exactly *which* towels to bring and which *not* to bring. Women are amazing, aren't we?

Then paramedics came. Thanks guys. They wanted to know if this was planned, and who am I. I swallowed sarcasm almost saying "yeah, we planned this. Look around... does any of this !!LOOK PLANNED!!!??" But I didn't say any of that. Something like five men came traipsing in, and the mother was shocked. There she was, in all her 'glory', still on her knees, and these guys come crashing the party. She kicked them out, in her very polite, Hungarian accented Hebrew. It was charming, really. They left, telling me that they are waiting in the hallway, just to get her into the ambulance chair and covered up. Remember, the birth isn't complete yet- placenta hadn't come out yet.

We got her into their chair, and I wrapped up the baby and held her. The paramedics came and started wheeling her out, and then the littlest child started crying "mommy! Hopital! Baby! Hopital! Sick boo-boos!!". So I intervened there-- the daddy wasn't able to find the right words to soothe her, and I had had experience doing that before. I told them that mommy & baby are going to a special hospital-- not the sick boo-boo hospital, the happy baby hospital! Everyone there has babies and all those babies are good! Then I had to pick up and follow the crew down the stairs with the wheely-chair bouncing down each stair, and the mother crying at each painful bump.

I need to interject here. This was the hardest part for me. I had flashbacks to that wheely chair and me bouncing down stairs in terrible pain. I was put into a chair like that the night the ambulance came to take me back to the hospital when I had NF. They came to my room, and I begged for a stretcher, not to sit- it hurt too much. They said that sitting was the only way they could get me down the stairs from my room to the front door. So, I yelped with each bouncing step, too. My friend who had come to watch the kids while we left would later write about the sounds like a "dybbuk" yelling, coming from the hallway. Later I found out that Dov had woken up but put the pillow on his head out of fear of hearing more.

All that was my flashback. And then, how that special chair bumped into the ambulance to become a stretcher. I remembered all that, and relived it in a way last night. It freaked me out. I was holding the baby, and got into the ambulance feeling dizzy from the trauma of the birth, and probably also my sleeping meds. I climbed in to sit on the bench near the mother, holding her baby, and got a sharp pain to my thigh. I tripped a bit because of that, and the paramedics asked if I'm OK. Remember, newborn in my hands. It was quite the flashback, I gotta tell you. Perhaps with a tikkun this time, but I still am processing it all.

When it comes to my own traumas, I get hit hard with difficult repercussions. But someone *else's* trauma I am as cool as a kitten. I can be there, and handle it all with confidence and grace. It is a bizarre, but very useful trait. I was attracted to this work partly because I have this ability. It's hard to shake me up with a crazy traumatic scene. As long as I'm not directly involved or affected.

SO, we got to the hospital, .....................

~~ just took a bit of a doze, gotta finish up here ~~

And all was well. :-)

Got home and asleep by 5am.

Slept till 2:30pm, got up, feeling kinda sick all day, low-grade fevery.

Lots of pain from my mesh surgery, and thigh aching with tenacious persistence. Neck hurting down the whole shoulder. Wrecked. But you knew that without me saying so, didn't you.

Going to sleep now, don't know for how long. Late into the morning, clearly. Then I have to go to the hospital to visit mommy & baby.

Next commitment for a birth: August. Fourth birth also, and I was with her for two and three. We have time till then.

Going to a wedding on Thursday, and then an appointment with the famous pain doctor here in Be'er Sheva Friday morning.

Now, to all a good night.

Shavuot 2011: receiving the Torah directly into my house

2011-06-09T23:40:00.000+03:00

Erev Shavuot is a very significant day for me.

It's the day, four years ago, that I came home

from the hospital

after being brought back to life from the brink of the other side.

I could barely walk, and was in constant pain.

Here is another tikun from that day to this:

I am going to try to recreate for you a really beautiful scene that happened in my living room on the night of Shavuot. Picture taking is something we refrain from doing on holy days such as these, so I am grateful for the opportunity to write with words the picture in my mind.

Staying up all night is a very strong tradition on Shavuot night. Hashem directed the people of Israel not to sleep at all. They were at mount Sinai, and were about to receive the most holy gift they will ever receive- the Torah. Sleep could alter their state of purity.

So we carry the wisdom of this directive into our days.
Robert always learns all night on Shavuot night. I love that he does.
I always stayed home and put kids to sleep, and usually myself as well.

This year my children said they wanted to stay up all night and learn. In my younger years, I'd have put my foot down and said they need their sleep; especially Azriel-- he's only 5. This year, with the wisdom I've gathered through hardship and pain, I was proud that they wanted to do this, and supported it wholeheartedly. Even for Azriel, for as long as he wanted to stay up. I had one stipulation: that learning is going on. In my opinion, one night of learning Torah long into the night is worth a thousand nights of going to sleep on time.

I took Shifra with me to a shiur-- a Torah class-- in our shul. She dozed off... :-)
When we got home, I saw the most incredible sight, forever imbedded in my mind. I saw my boys, the three of them, with three other boys who are their close neighborhood friends strewn all over couches and carpet learning Torah. A few were studying BarMitzvah portions, a few studying Mishnayot (a code of writings that compliment the Torah, written from the oral tradition), and someone was also learning megillat Ruth, the story of the famous convert Ruth, which we read every Shavuot.

These boys were all between 10 and 12. It was nothing short of magnificent. Breathtaking, to my eyes. My ears also soaked up the symphony of young boys' voices learning Torah. At the time, Azriel was snuggled up to one of Dov's best friends, listening him learning his BarMitzvah portion. This boy was showing Wazi, in the Tikkun (book of the words of the Torah, written on one side of the page with cantillation (chanting) markings, the other side as it appears in the Torah, without markings) pointing with his finger to all the words he was singing. It was gorgeous.

After a short while, they all asked for cups of coffee... it was the cool thing to drink on such an occasion, of course. So, they lined up with their disposable cups, and I put spoonfuls of instant coffee in each cup. Then I took each one and put in sugar and filled them with hot water. The milk was on the counter. I brought out the cookies, and they grooved on coffee and cookies at 1am.

Then I went to sleep.

They stayed up all night learning. *ALL OF THEM*. Azriel learned megillat Ruth with Robert, sentence-by-sentence, awake and alert the whole time. He only zonked out at 4am. He's such a product of being the youngest kid; he does what the older ones do, without thinking twice. It was natural for him to learn Torah into the night. No way could I have put him to sleep with *that* going on. He's an awesome kid.

When I got up to go to shul the next morning, everyone was asleep except for Shifra, who was quietly playing in the living room. Robert was asleep on the couch and Azriel next to him in the stroller. Apparently Azriel went to the sunrise prayers with Robert & Dov & Ya'akov! There, I am told, he fell asleep in Robert's lap, and came home in the stroller.

Shifra and I went to shul. A profound effort, actually, for me... leg pain, though I was happy I went.
We came home to a few people up, a few still asleep, a board game being played, and only good things everywhere.

Then we made a delicious bar-b-que! You can only cook on a Yom Tov (Holy Day) if it doesn't coincide with Shabbat, and you can light flames from a flame which existed before the chag. We lit one of the long-lasting yahrtzeit candles, and Robert started up the coals with it. Very special, and very delicious!

My family is everything to me. That is where my happiness comes from. This whole poor health thing? This four year (and counting) ordeal fraught with loss and pain? It gave me the power to give myself to my family. It also gave me the power to trust in Hashem. The paradox: loss and pain gave me power. Stunning.

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

Though often I don't feel powerful; this is the thing.

I had an MRI today for my thigh joint. The sounds that come from that paint quite the contrast to the sounds of a group of young boys learning Torah.
Sounds like jack-hammering... machine gunning.... some sort of alien abduction... my veins shot-up with something.... it made power go hide for the day. Can't blame him.

The whole rest of the day today I spent in bed, feeling powerless. I had wanted very much to go to the beach with Shifra & Azriel. I couldn't manage it.

But they were completely happy, anyway, baruch Hashem.
I am too, mostly... I just wish that power I have in me came out to play more often.

Pills or surgery?

2011-06-06T08:56:00.002+03:00

My pain doctor sent an answer to me finally. Turns out he is in America, and he transmitted info to his secretary, and she called me today.
He suggests to raise the dosage of the Lyrica by 150mg, at night, then add 150 more by day. That brings it to 600mg a day if I go there. HUGE dosage. But I have complicated types of pain. Tonight I did start with adding the first 150, and so far no recognizable effect. It has to build up.

I got to talking to Robert about it. I was reminded that way back when I had my last appointment with my surgeon who did the mesh surgery last July, he told me that he used a type of mesh which he chose based on my initial consult with him, telling him this is the first step toward plastic surgery for reconstruction of gapey.

He said, post surgery, when I told him that I still have a great deal of pain from it, that it'll go away after the plastic surgery. I said I am thinking of *not* doing the plastic surgery... he said he has no answer then about the pain. He intimated that it may never resolve itself.
He has no experience with pain from that type of surgery lasting so long. But I'm quite sure he never did a mesh surgery quite like mine.

The point is that almost year later I have similar pain to what I've had for almost six months.
I am considering the reconstruction surgery. I am very surprised at myself for even thinking about it after all I've been through, but it actually makes sense.

This pain may not go away until I do that. He put in a mesh that is very strong, with the consideration that there will eventually be deposits of fat surrounding it and I wouldn't feel it. Right now there is just raw muscle, and raw skin graft with no fat layers at all protecting the nerves from the mesh. I feel where the mesh is, and in the ideal situation, a person isn't supposed to have nerve problems that feel things inside you. I can even feel it when I palpitate gapey, although I hardly ever do that because it still creeps me out. Gapey is numb to the touch, but painful inside. Much like my leg/skin problem.

The higher dose of Lyrica may help, we don't know yet. But do I want to take so many drugs? that's another subject altogether, actually, with my GP prescribing a new migraine medicine... a cousin of the one I had lip and throat swelling after I took it. She said it's a distant cousin, but I should be careful when I take it, and be aware of any signs, etc...

Is it better to take meds for the mesh pain, when I have other issues that need meds? This migraine med which I haven't had to try yet... is it really a better option than the huge wad of Advil I take when I have a migraine? Advil is a big no-no with my kidney disease. But how about trying a medicine I may have a dangerous reaction to, but it is better for the kidneys? There is nothing new in the world for migraines. Not many choices.

Pills, pills, pills. Lots of Lyrica... possibly in another 8 or 9 months that dosage, too will become less effective, and then what do we do?

My gut huts every day, most of the day.
Drugs are hard on internal organs; liver, kidneys, heart.
The circle of interventions is a swirl, getting greater and greater with every challenge to overcome, and always with the threat of falling into the black hole swirling down.

Reconstruction surgery (surgeries, actually). The hope of taking care of gapey pain forever. The risk of it not taking away pain, the risk of making things worse once we take off the graft.

I am seriously considering it. I could reduce my pills. I could close gapey.
I remember also a doctor in Ichilov from the orthopedic oncology unit where I go for my PVNS follow-up. He also said, over two years ago, before I had the mesh put in, that closing gapey would solve the nerve problems. Putting fat layers back where they need to be is good for this sort of wound.

Pain pills vs. surgery.
I think I am opting for surgery... once and for all. Give my organs a chance to be healthy instead of long term pumping pills into them. It's also a chance to be stuck in bed and write lots. But that'd be *it*. Gapey would be a thing of the past. Impossible for me to imagine.

But not before my oldest son's bar Mitzvah, early November. So we have time. I don't have to decide now.

But it makes crazy sense, right?

State of the union: Update from The Front

2011-06-03T15:57:00.001+03:00

Physical report:
MRI of neck is close to 100% fine, the orthopedist said there is nothing for him to do. No infection, no PVNS-looking things. He recommended a good chiropractor. There are some protruding disks, but nothing severe.
There is one thing that I think I'm going to take care of. The report said there is a "hemangioma" near one of the vertebrae. That is merely a collection of blood vessels that has made a clump. It is usually on the skin, like a strawberry birthmark sort of looking thing. I do have a big, raised (brownish) mark on my back, but I don't know if it corresponds with the one inside that the MRI saw. (My doctor was nonplussed about the MRI.) Big, raised birthmarks run in my family, so I'm not so concerned, but I think now that I'll get rid of it. I don't want something lurking underneath.

Pain:
Neck/shoulder still painful, but with some improvement. Range of motion still limited because of pain, but usually liveable.

Leg, thigh joint:
Same. No change for the better, or for the worse. Pain when I walk, pain when I sit for too long. Limited range of motion, but liveable. The only thing that helps is lying down in bed. Regularly scheduled MRI (every 6 months) in a few weeks.
I am still swimming, and it does help. There are times in the pool that I feel no pain. It is divine. Usually when I leave the gym I feel strong and renewed. I aim to go every morning, or at least every other. B'ezrat Hashem.

Nerve pain:
I have not heard back from my pain doctor! Very frustrating. I need more help with the nerve pain running up and down my thigh. The "Lyrica" was extremely helpful for a pretty long time, but for whatever reason, I am having lots of "breakthrough pain", and need more coverage. My clothes hurt. If I wear something elastic and tight under my clothes, it helps, but it is *hot* and uncomfortable in many other ways.

Hernia, ten months post-mesh surgery:
Still have pain around that area that my surgeon said was the difficult part of the surgery, where he had to attach the screw to bone, much tighter. The other screws are attached to muscle and cartilage. I think the Lyrica was helping with that, too, and is less effective now.

I am thinking of changing pain doctors.

Sleeping:
Long hours. Whether or not you chose to call it "chronic fatigue", I need a lot of sleep. I've had a lot of intense infections and surgeries (not to mention complete organ failure and coma) in a fairly small period of time, and this is the result for me. I haven't been able to completely reconcile myself with it. I don't like sleeping so much. I don't like my body forcing me to sleep instead of being with my children. I don't like feeling so helpless.

BOOK:
Getting closer to signing the contract. The publisher is very patient, thank Gd. I got in touch with a literary agent to clarify issues for me regarding the status of this blog once I publish, and it looks good. I am presently waiting for a response from the publisher, hoping everything looks OK to her.
I am excited and a bit scared to begin what I hope will be a regular schedule of writing. The question is, how do I create a schedule? I have been off a regular schedule for four years now. FOUR YEARS of no real schedule, except for what the children need for their schedules.
I would love to: drive Shifra to school at 7:40, go swimming from there, come home and write until I have to get her at 1:45. But I feel that isn't enough time to write. I need a larger chunk than 3 hours, which is actually 2 1/2 because eating is in there also. And then there is the issue which is in the way of that... I don't wake up that early. I often sleep until 9 or 10. So, to get up early and drive the children is a landmark I have not yet reached. Lots of times, by the time I get up, I can only go swimming or a few errands, then pick up Shifra. My mornings aren't so available.
Enter babysitting... my question is, do I take away time with my kids in the afternoon. I currently have an offer from a good babysitter who our family knows and loves; she wants three days a week, steady. I could take her up on that, and get three afternoons a week of working, but being home (holed up in my room). She swooped in out of the blue; we hadn't heard from her in months, since she had taken other work. Now she suddenly comes in and asks if we want her steadily. Do I take her up on her offer? I am looking for my hours of writing to be steady, right? Is this from the Heavens, or should I turn it down in preference for being with my kids. That is where I am. I am leaning towards taking her up on her offer; school is almost over, and I could use a break from kids in the afternoons. They will be around more.

Emotionally:
Being consistently tired and having pain is a DRAG. Depressing. It takes a toll on everything. My mood; physical ability mandating my emotional state. My home sometimes goes into crisis mode; that being just taking care of essentials, leave the rest. But leaving the rest isn't healthy.
Being tired is awful. It is a handicap, and most people don't realize that. I didn't realize it before I was put here. I tread water sometimes emotionally. My head is above, but I work hard not to s i n k.

Taking all this into account, is taking a babysitter three times a week, for the purpose of me working on my book, logical? Somehow, it seems... oddly... yes...? Writing my book is a deep need for me. But the kids... you know what? Maybe I'll just talk to them about it. Three out of four can really express themselves well at this point. And the fourth goes with what is good for everyone else. If those around him are happy, he is happy. Easy kid.

That is true for all of us, isn't it... if those around us are happy, it is natural to be happy along with them. Kids are just little real people. They will be good with it if they see I am good with it. I hope and pray I can be good with it.

Not just another holiday

2011-05-31T19:33:00.001+03:00

The next holiday in our calendar is tomorrow. It is יום ירושלים (yom Yerushalayim), or Jerusalem day. In my calendar, it marks the day I had my skin graft surgery four years ago.

I remember the morning when the nurse woke me up and told me she needs to get me ready for surgery. I thought to myself "I need to get myself ready for surgery". It was about two weeks after the beginning of the NF attack, and I was s c a r e d out of my w i t s. Here I was with this HUGE hole in my stomach and upper thigh, and I was satisfied with "the devil I know" as opposed to after the graft surgery, ie: "the devil I don't know". Only the day or two before was I beginning to be able to get myself to the bathroom without help.

[I am, at this moment, remembering a small exchange with my surgeon (from the hernia surgery)... it is one of those million tiny scraps of memories we have from intense time periods of our lives.
I was standing, leaning with the aid of a walker, getting myself to the bathroom. My parents were there in the room with me. In walks my surgeon, and says "hi! What's up?" Of course, that set me up to answer "me!". I remember his expression; it was a sort of smile, but the type of smile that is missing the 'happy', you know? I think I understand what that was for him; bittersweet. Objectively speaking, it's a good thing that I was standing. But there was nothing objective about his feelings. He felt guilty. The fact that I had recently learned to stand again only wedged a thorn in his soul. He knew me when I was strong. He felt a deep sense of responsibility for the state I was in.

Little does he realize now that I am even stronger then I was before, it's just not the type of strength you see on the top of Mount Masada.]

Here I was about to go through another surgery and get knocked off my feet again. This one was scary because I knew how it was planned out. They were going to take skin from my right thigh and use it to close the wound... "the wound"... later to be called Gapey. Little did I know that the skin graft surgery would create another wound, on my right thigh, which would be the bane of my existence for the whole year to come (soon after to be named "Scrapey").

I told the nurse I am not ready yet to be taken down to the operating room. I needed to daven (pray the morning prayers). She said there is only limited time to wait, the OR is waiting.

I got out of bed, limped slowly to the bathroom, washed my hands ritually, limped back to the bedside, took my prayer book from the drawer of my table, and PRAYED. I prayed with all my heart. I cried. I stood upright the whole time. One hand held my prayer book, the other held the enormous pile of packing bandages that were wrapped in and around my body.

The nurse came back and rather abruptly said we have to go NOW. Conveniently, I was finished. :-)

I was wheeled down to the surgery room, where Robert met me. We held hands and said our goodbyes, both of us trembling with fear which we hoped the other didn't see.

I breathed deeply while the mask delivered foul smelling ether, and went into surgical sleep.

I woke up and immediately asked Robert what day it is. It was the same day, Baruch Hashem. I was not returned to the ICU. I was OK. Then I felt it... the feeling I would feel for many months to come... the b u r n i n g up and down my thigh where they took the donor skin, like a torch under the bandages.

I got through that night with the help of morphine, and a dear friend who spent the night in the empty patient bed in my room. Two days later was the "bandage ripping off" episode. If you want to follow the story, it continues here, in the CaringBridge journal. This entry was written by Robert on Sunday, May 20, 2007.

I know this was hard reading. I want to thank you for hanging in there with me so I could recount an important day, Yom Yerushalayim, four years ago. Being able to be on the receiving end of a survivor recounting a trauma is an incredible merit.
May all of you be granted health and strength in the merit of your support for me.

The pain of one generation

2011-05-29T16:24:00.000+03:00

I need so badly to write I feel like a nervous wreck. It is phenomenal how desperately I need to write. I go from one task to the other, feeling the day slipping away, wondering when I can WRITE. We have been sort of off-line for a while, switching internet providers. We don't yet have the proper wireless modem, so my computer is presently "hard-wired", and it is the only one in the house [temporarily] that has internet. Hopefully tomorrow this will be rectified...

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

If I say things have been so hard, will you cry with me? I need you to cry with me. I need to cry and have you be there; right there with me. Breathe deeply, and hold my hands, and look at my face, my tired eyes.

There are times that I feel so sick. My body aches like the flu, my fever gets to that low-grade-fever-non-fever zone. But my doctor says I'm not sick. So, I'm not sick. I try to fight it. I fight it with all I have. I fight it with my life force.

The most recent example of my fight:
I got out of bed late in the waning Friday afternoon, showered, even did my hair nicely, then relented; rested, in bed again. Forcing myself to go against the gravity of my body with my bed, I arose, and got dressed in Shabbat finery. Giving in once again, I slipped back into bed again and cried, together with my life force. The struggle is draining. I needed just to sleep, but I am *not sick*. I keep saying to myself I am *not sick*. I don't want to be the "in-bed" person.

Robert said we'd have to leave in 10 minutes in order to drive the car to the banquet hall. I GOT UP AGAIN. I lit Shabbat candles. We went to a lovely dinner in honor of our good friend's daughter's Bat Mitzvah. I felt sick the whole time. My chest felt like there were cinder blocks on it.

I had a throbbing migraine in the middle of the night. I took lots of Advil, an NSAID, which is prohibited for someone like me with kidney disease, but I have no other options to relieve the headaches. I should go see a neurologist. Another doctor. I put it off until the next time, then take lots more Advil, then say I should go see a neurologist, then I put it off. A new doctor; I cannot palate the idea.

The migraine, I am very sure, would not have entered the picture if I had listened to my body and rested Friday night; not joined family and friends celebrating. But I'd have been sad. That is, sadder.

Did I tell you that I am also a closet hypochondriac?
A birth mark with red around it probably means I will die within a few days from some infection-gone-awry, or that it's cancerous.
The dermatologist dismissed it, unimpressed.

I don't have the evaluation of my neck/shoulder MRI. While I wait for it, I secretly wonder if it is a tumor, or if I'll need surgery. I'll have the answer in a week or so... My un-closet self says it's probably nothing; tension. The same constant pain for five months, yes, it could be nothing treatable. Pain and I, we know each other.

Which brings me to the subject of... pain. I wrote a letter to my pain specialist, and will fax it soon. I am asking him for his opinion about the possibility of upping the Lyrica. I am having break-through nerve pain with my thigh skin. My clothes make my skin hurt. The surgery I had last July also is acting up. I need a new pain solution.

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

The Torah implies that the people of Israel cried out for many years while they were being enslaved in Egypt. We read in Exodus 2:24 that "God heard their cries, and he remembered the agreement he had made with Abraham, Isaac, and Jacob" [that being to bring them into the Promised Land]. This begs the question: *When* did He hear their cries? How much crying happened before He heard? What do you mean "He remembered"? Gd forgets? No, my Emmunah does not have room to allow for a forgetful Gd. So where does that leave me-- well, where does that leave us -- you, my readers, my partners-- and our communal tears?

Did you know that the generation which Moshe brought out of Egypt never made it into the Promised Land? They received the Torah, but not the Land.
They bore the pain for the entire generation. (Andi... your words reached me.)
But I want to say again, *they* were the ones who received the Torah.

There is so much implied for me, personally, in that statement, I feel humbled to even voice it.

bringing home handicapped parking

2011-05-25T01:31:00.000+03:00

Tomorrow I have a meeting with a committee from the State (national) health providers to discuss weather I can have a handicapped parking spot marked at my house.

I know it would be inelegant, to be sure. I am in conflict with myself whether or not it is something I need. I just wish the neighbor with his three different vehicles didn't park in front of my driveway. We have spoken to him, to no avail. He knows I have a handicapped parking tag.

As I lie here in bed with my kidney shooting little waves of dull pain, I am reminded that people don't believe that I have been through as much as I have because I look fine. The neighbor sees that I look fine. The committee will see that I look fine, but they will see my documents and letters from specialists. They will do a physical exam and see that my thigh joint doesn't move to the left.

But my limp is now imperceptible, thank Gd. It's there, if you know what you are looking at. But, lots and lots of physical therapy, and healing, and I am walking mostly normally, but with pain. Imperceptible pain. Pain that makes walking distances is not something I can do.

So, I need a reliable parking spot, inelegant or not.
I wish I didn't.

Did I tell you that my pain doctor in Hadassa Ein Karem (Jerusalem hospital) recommended a special orthopedist who has a state-of-the-art procedure to replace synovium and cartilage? He injects some sort of viscus material straight into the joint to help with damaged synovium and cartilage. My doctor said that this procedure could help with my pain & mobility problems. I haven't gotten in touch with him. I am scared of injecting anything into that joint. I think it's dangerous. The possible reactions or backfire is too scary.

Tomorrow I have to go to this committee to prove that I have mobility problems and need a permanent spot. An inelegant permanent spot. That's just how it is.

And to think, once, a long time ago (21 years ago?), I was training to hike Mt. Kilimanjaro In Africa. I had tickets, and I was climbing and running and training for the trip.
I miss hiking. I miss being in perfect health. Yup.
That's just how it is, isn't it.

We interrupt life for this report on... life after NF.

2011-05-22T22:27:00.000+03:00

I have been living with the concept of this book contract now for a week or so. I haven't signed yet, but just a few details need to be written in and we're good to go.

I know enough now to know that it *is* possible to live with two realities; here, that means starting a new schedule of working on the book, while knowing that my life is no longer cut out for schedules. But knowing it and reconciling myself with it are two different things.
(MM- thinking of your wise words as I write that.)

I receive full disability benefits from the national health insurance. The board which reviewed my case over two years (before this became fixed and permanent) agreed that I can not be held to a consistent work schedule because of my health. The country does not haphazardly throw full disability to people for no good reason. In short, I don't work any regular job. Writing a book under contract with a target publication date is working a job. Not in the conventional sense, but a responsibility nonetheless. A new pressure.

...as I wrote that, I stopped to take my nerve pain medicine. My thigh was fighting me and not letting me get comfortable in my bed. I hope it takes effect soon. I have been having more nerve pain. Note to self: call pain specialist to ask if I can up the already borderline high dosage of the Lyrica.

on schedule for tomorrow:

teach two hours of birth prep in the morning.

Pick up Shifra at 1:45, get her to art class at 2:30. Leave her there for another mother to bring her back, and go to a

3:30 dermatologist appointment to check out local infection (?) I have on my shoulder; redness and pain at a birth mark for a few weeks (same side as the shoulder & neck pain I've been having for five months).

Go to Soroka after that for a

5:15 MRI for my neck (this is the one the spine & neck orthopedist ordered).

I interjected that there because I didn't know how else to make my point that for me, working to write my book, as much as I desperately want and, on a certain level, NEED to write it, is daunting when faced with a contract and a target publishing date.

Yesterday, Shabbat, I slept *a l l d a y*. Deep, dreaming, impossible-to-stir sleep.

The children woke me for Kiddush and Shabbat lunch after Robert & they set up the whole table with salads.

I gratefully joined them, ate a bit, thanked and blessed the Good Lord for the food,

then returned to bed. I slept and slept.

Robert cleaned up.

Can someone so unreliable write a book with a contract?

YES, if the contract and the publisher are flexible.

With the feeling I have from the publisher after meeting her, I do think she is the right one for me to work with.

God doesn't make mistakes.

Oh, and, by the way... today is the [Hebrew date- Lag B'omer] anniversary of the day I woke from the coma four years ago. Happy re-birthday to me. Bittersweet. Even four years later, talking about it to the right people brings out the tears.

Chronicles of an NF survivor

...and then there are those nights.

Time's heavy voice, and three wishes.

Finally an update! Two+ weeks after surgery

No News is Good News + A Public Thank You

Life, as lived from my bed.

email to my doctor

The "Waking Up" Chronicles

a central theme, not-so-eloquently put into words

There's no place like home.

Notes on The Day before.

Introducing Trudy

And then she wept...

Sunday afternoon Hip-hop

I slept nineteen hours straight.

Plans for healing, or healing plans

Asking "why?", even though I know not to.

Loose emotions, on the run.

Medical Update: the Three Week countdown.

Curious George meets the gym...

Raising the patch

Balance.

off balance

A survivor begins at the end.

The water wheel and The Mentor

On being awake

The story, the *whole* story.

"Sissy" is so out of there. Read the comments. :-)

Dealing with adversity, or fighting it? (or: am I a sissy?)

Healing

contradictions attract... so I *am* in balance, actually!

Manic musings

This post is like the yin/yang... the pain, and the joy.

More medical stuff- two appointments

back on my feet- medical update

The step down to 5mg- Lamictal

Reality check...

drowning in my bed

the aftermath of a wonderful weekend

Bad things behind, big things ahead!

The 'all clear' has been sounded

Tuesday procedure

Not much time for writing

Musings from a scared patient

Home, don't know for how long.

OK, don't get overly worried, but...

"New Math"

Sarah, prototype "no pain". Projected launch: coming soon!

My laboratory

The dark path and the lightening bolt

The first day of the rest of my life

breaking point?

Steamroller blues

Say "no" to narcotics

motherhood and pain

fever

the memoirs of Deborah Masel

No title-- too tired.

I want to quit going to doctors. I want to pretend everything is fine.

Things are good; trimming down the blogging.

Home and away

Planes, trains, and Israel

Taking care of myself, body, mind, heart, and soul. In that order.

My son's name is Azriel. It means 'Hashem helped me'.

About 'lovechild' and washing dishes.

Medical update, and the power of a dream.

OK, things are looking up, Baruch Hashem.

A pictorial essay of the blessings in my life

Outraged at pain

Rumpelstiltskin takes to the road

The wheelchair chronicles

For my mother

And now *both* sides hurt!

The end of the school year , 2010-2011

What a long, tiring week it's been. (with lots of good sprinkled on top)

Head stands and watery joints

singing the blues

"Sarah, you don't have to be in pain."

To every action, there is an equal and opposite RE-action.

Beaches and babies

The story, the whole story.

contradictions attract... so I am in balance, actually!

And now both sides hurt!