Nope, no good fairy, and so far, no MRI

 Well, I was wrong. There was no good fairy. The approval I thought I had from the national insurance for the MRI didn't actually happen. I mistook the approval that did come through for the approval for the MRI. Instead, it was only the approval for the contrast material *for* the MRI. So the contrast material is approved but the MRI isn't. Lovely system. So, in short, I don't yet have approval for the MRI. We can't begin to investigate this pain problem until we have an MRI. The insurance wants me to get a recommendation for the MRI's (there are supposed to be 3 of them) from someone here in Israel. I'm not really in contact with any surgeons here, so I had to just choose an anonymous surgeon and hope he will write the recommendation after I explain everything. I will show him the recommendation from my doctor in New York and pray that he'll write the same thing, but in Hebrew, from Israel. If he won't, then I have to look for a plastic surgeon who might. The doctor in New York is a plastic surgeon, so I'm not sure if a general surgeon will do it. In short, I'm back to square one.

In the meantime, I do think the physical therapy is helping a bit. I think the pain in my hip is overall less. I'm being diligent about doing it at home as well as at the gym, and I think it's paying off. The physical therapists I work with are concentrating breaking up huge, hard adhesions (which they point out to me so I can feel, too) and working on massaging on the scars. I think much of the nerve pain I am feeling is from the scars. It hurts like hell while they are doing it, but I think it's helping overall. Maybe I can avoid more surgery after all...we'll see how things develop.

It's been a hard week. I had a week-long headache, mostly that I could work through, but on Wednesday night it became a migraine. And I mean the worst migraine I've had in years. It hurt so much I thought my head would just literally split open. I was wailing and moaning in pain, rolling around my bed. It was B A D. I threw-up a few times as well. Somehow by the grace of Gd, I got to sleep a bit after the second throw up, but the pain didn't totally go away. I fitfully slept through the rest of the night, and stayed home the next day, nursing a migraine hangover. It was really really awful. I managed to stay out of the hospital, just out of sheer distain for the hospital and all that entails. I'm OK now, Friday, but still laying low. Well, I did go to the gym today, but I took it easy.

I'm going to rest a bit now before Shabbat. I'm exhausted.

Shabbat Shalom to all!

We have a date! ...and fear.

It's coming up fast... June 24th is the date.
I finally heard back from the surgeon.
June 24th.

We'll be flying out on the 20th. Robert is going to stay in NY with me for about three weeks, then he'll head back. It's important to me that he gets to visiting day at Azriel's sleep-away camp. There was the year neither of us went because I was after my mesh surgery and in incredible pain, I needed Robert. Dov was not a happy camper, literally. He was set up for the day to hang out with his best friend and his family, which is like our family, but he wasn't warned beforehand that we couldn't come. I kept thinking I'll make it. But I didn't; it's a three hour ride to the camp, I couldn't make it. He cried. :(  I took him out to a movie theater movie after he came home from camp, just me & him, to "make up for it", but it didn't make up for it. Here is the blog entry about that.
So I'm [hopefully] sending Robert back to Israel to be at visiting day for Azriel.

I still have a lot of questions for him, I hope we have a Skype conference soon. He said he'll go over all the information with me soon. He requested photos of the area so he can look at them and clarify things as we are talking. This information that I need is vital. I need him to answer my questions.With the help of G-d, everything will fall into place. But as of now, it is looking like I'll go out there June 20th, spend Shabbat there, then have the surgery on that Monday. I'll still be jetlagged, but a little less after 4 days of adjusting. My immune system is often weak when I'm jetlagged, but I'm hoping the four days of resting will help matters.

I'm getting paranoid these days. Every time I thought it was a good time to do this reconstruction surgery in years passed, something happened with my health...another bout of cellulitis, too much pain, a million things. Then there were bar & bat Mitzvah's that I needed to be healthy for. Now, I am looking for a sign; a sign that I made the right decision. If something happens with my health, that will be a sign not to go ahead with the surgery. But I want a positive sign. I need to know I made the right decision, and that it's blessed by Hashem. So far my immune system seems happy, my kids have been sick, and it seems I got out without catching what they had. That's a good sign. I have like three or four little cuts these days, and I keep wondering if one of them is going to get infected and give me sepsis again. I know to you it sounds crazy, but to me, I think about it with every cut I get. I had sepsis, and Necrotizing Fasciitis, nothing is too outlandish for me to think of. Call it paranoid, but everyone on my NF support list feels the same way. It's just what happens after such an insane disease gets to you.

I remember how painful the mesh & clip surgery was. This is in the same place, but to take out the mesh and clips and put in something organic. I'm worried about pain levels, and how to control it. The mesh surgery was painful for an entire year, and only lightened up when I started on the Fentanyl. I do NOT want to be forced to that route again, obviously. I think the skin stretching will be painful, too, but it's worth it to get rid of the skin graft, if that's possible. I sent the surgeon pictures, we'll talk soon. It's only Monday morning there, beginning of the week. I sent the pictures on Friday. I will write to him tomorrow about scheduling a Skype if I don't hear from him today.

I can't believe this is going to happen...in two and a half weeks. I'm nuts. But you know, people will do a lot to live a life without pain. I don't want to be on pain meds, and please Gd I have a decent amount of lifetime in front of me, I need to be out of pain. Even if the steroid shots worked (which they didn't), I'd be doing this, because they don't work forever.

I'm nervous, and have so many fears. I am working on my fears in the day program with my shrink. At the same time we are in the process of closing up shop for me there, temporarily. I'm getting a discharge, and when I come back we'll be in touch and my follow-ups will still be there. I don't feel ready to be done with that framework....it has been sooooo good for me on so many levels. OK, one thing at a time. I'm going to NY for the surgery, I'll be gone for at least a month, so I need the discharge. Nothing is a closed door though, they are so incredibly supportive there.

Oh, and to make things interesting (never a dull day), Robert and I spent last Thursday night in the ER with me with a horrendous migraine. Just to spice up life a little. The Cannabis didn't even help, it was so bad. They changed my "cocktail" a little (a lot), and although it helped the migraine, I still had the same migraine on Friday, but I was able to sleep it off. It started to come back on Shabbat day, and I was able to sleep it off then, also, and since Sunday I've been free of it. I started wearing my magnet necklace again, not sure if it actually works, but it can't hurt. That's all I need is my migraines coming back. I'm trying to figure out which food I might have eaten to trigger them- I had headaches all week last week- and it seems it may be from peppers that were in the marinade for olives. I ate those olives all week, and every day I had a headache. Paprika gives me headaches, and paprika is made of peppers, so I try to stay away from peppers, but I didn't read the ingredients in these olives. I'll learn.

OK this is too long already. Thank you for getting to the bottom!
More to come after I speak with the surgeon. We'll have answers, please G-d.

New Normal- Purim 2019

Well, I'm not sure if it's a "new normal" forever, but what is ever forever anyway?

I have to believe that the CPTSD will chill out in time. But not quick time. We're talking years here. So yeah, new normal is about where I'm at. Months at the day center at the hospital which I've been doing, and years thereafter in individual therapy, focused on the CPTSD. Fun times. But I feel that an unimaginable life is there for me when I can dig myself out of this. I picture it without pain, illness (well, unlike the illness *I've* seen, anyway) , migraines, and enjoying my kids (& grand kids?????????? No, nothing on the horizon, but a mother can dream, can't she?). I try to hold onto that picture when things get bad.

Thing is, when things get bad, they get so bad that I can't see through to that other picture. All I can see is the trees, not the forest. Never ending darkness. And I see it a lot.

I had no idea how I was going to make it through the Jewish holiday of Purim this year. Every year it's hard for me- it's notoriously loud and boisterous, people in costumes, children over excited, and a general loud fest night and day. Every year it is a struggle for me. But this year, I knew it'd be impossible. But I'm still a religious Jew, and I feel bound to the laws and traditions of my people. That means that I have to hear the Megillah (the book of Esther), read from an original scroll (animal skin parchment). But there are many ways to do this. I chose the quietest way possible, and it's not at my shul....

A friend was in the hospital, healing after having had surgery. I knew that there are people (usually from Chabad) who go around all the wards in the hospital and read the Megillah to the patients, because they cannot get out to hear it somewhere else. So, I went to her. I had wanted to visit with her anyway, and here was a perfect opportunity. She didn't have to be alone for Purim, and I can have a quiet experience with my friend. It was perfect for me.

The next day is also a huge to-do with Purim. Lots and lots of activities, sugar overloaded kids, a large festive meal with the whole community, costumes, and much more noise. My noise sensitivity is really activated these days/weeks/months. It's part of the PTSD, and it's very hard to deal with. I could not have ANY of that. Just too much sensory overload, from start to finish. In all previous years I've done it. But this year, I knew I couldn't do it in any way, shape, or form. Problem is, what do I do with that day? It also has a few laws and traditions that I wanted to abide by.

So what did I do? I was recently inspired (the night beforehand, which I was actually suicidal, and this counselor helped me down from the ledge, so to speak but that's for another blog) by my previous counselor to go on a hike into the forest. So that is exactly what I did! I put on my 30 year old hiking boots, the same ones which had taken me through the Swiss and Austrian Alps in the winter of 1990, and up Massada in the summer of 1994, and also that I had lent out for someone's use once. Thirty year old hiking boots with stories to tell. Perfect. They still fit as they always had, and I was so happy.

I packed a modest meal, because one of the laws of Purim is to eat a festive meal in honor of the miracles that happened to the Jews. Packed up another few things, and went on my way! I happened to be wearing my Brekenridge Colorado sweatshirt, where I was last summer with my on-line mom's group, so I was inspired.

I got to Yar Lahav, a forest about a 20 minute car ride away from my house.
Immediately I had to get passed a bunch of Beduins (Arabs) that felt a bit threatening. Especially one, who had started to follow me because he was shepherding sheep and goats that I had just photographed. He was following me yelling "Allo! Come back! What did you do!" (in Hebrew).

I threw him off my path thankfully. I know people get killed that way-- a Jewish girl was just murdered by a terrorist in the Jerusalem forest a few weeks ago just for hiking alone. I was scared, but I looked straight ahead and walked fast.

After I lost him, I was on my own. (But I looked around me a lot, didn't feel 100% safe, but most of the time I could ignore that feeling. You learn to live with it).

I hiked around for about 3 hours before something horrible happened....... my 30 year hiking boots fell apart! The soles fell right off them! First just the left shoe, and I tried to tie it on with a plastic bag, but that didn't hold at all. Then, about 20 minutes later as I was going on a downhill angle, the right sole came flopping off too. Ack! I was only walking on the soft leather bottoms at that point, and I had at least three kilometers to get back to the car! I tried to find soft places to walk, but suffice it to say it was an impediment. (no pun intended! :)

PS- don't have faith in 30 year old hiking boots!

At that point I was near a beautiful scenic overlook, so I decided to have my meal.

beautiful clear day-- my view from my picnic rock.

 I sat on a rock, took out my canned Mackerel, olives, artichokes in vinaigrette, and home-made sauerkraut, and fork that was broken (from the fall I had when my shoe broke.... I got a little banged up, too, but really just small collateral damage.) I really enjoyed that meal! I said my prayers over the food in the merit of queen Esther who saved the existence of the Jewish people on Purim way back when in Persia. It was awesome, honestly. Gratitude overflows for that meal.

Then I began my sole-less hike back to the car. But I didn't really know which direction it was! But, unlike in 1990 when I was in the snow covered Austrian alps with no trail maps and the sun was going down, this time I had my GPS. I had recorded the coordinates of where I parked the car, so I just set up WAZE to take me to those coordinates. Smart, I am sometimes. It took a little over an hour to get back, but boy were my feet sore by the end! And I was grateful to see the shepherd and his flocks gone, and three Israeli army soldiers with their guns were having a picnic pretty near my car. All was well.

I sat in my car with the seat relaxed back for a while, catching my breath, and I think I took a little 15 minute nap. It was a perfect day, in my eyes.

That night we went out to dinner with a guy Robert works for, his wife, and two of his English (British, that is) friends. It was great, but somehow, even though I was really careful, I woke up with a migraine the next day. I don't think I had anything with gluten in it, but my gin & tonic might have done it. I read later that gin has wheat in it and people who are gluten intolerant shouldn't drink gin. Ah well, one less drink allowed to me. I'll have to stick to whiskey and rum. :)

So that was my Purim, and I am grateful, overall, at the possibilities Hashem showed me when I knew I couldn't do the "regular" Purim we usually do.

I'll end here, even though I have a story about trying to go to a wedding last night.... it's hard. The loud music, crowds, and in this case the strobe lights also made me insane, we had to leave early. OK, that's just what it's like living with Sarah. Oh yes, and at one point a huge flashback had me in tears as the chuppah (wedding canopy/ceremony) was going on. Thank you, JG, Robert, some shots of whiskey, and my pills which helped that blow over. But anyway we couldn't stay long-- those strobe lights were very bad for me.

That's life. It's going to keep being this hard for some time.
But like I said in the introduction, on a good day, I can have hope for the future. Just don't catch me on a bad day.

beautiful daisies abounded everywhere

Lots and lots of wild flowers were everywhere! The recent rains helped those a lot!

Lots of things are "off", but I'll get back on.

I just need to talk.

Things have been pretty crazy. I'm not at liberty to say much about a huge issue that has pervaded my week, but suffice it to say it has thrown me for a huge loop. I'll be OK, it's going to take time... it's something that triggered my PTSD in a big way. It's not enough that the steroid shots were messing up my sleep, now this has seeped into my dreams (nightmares), and conscious living as well. I have support, but at the moment it's not enough. But I'll be OK.

I've also had a stomach virus... not a big bad one, just enough to mess up a day (well, 3 so far...). No fever or achiness,  just digestive imbalance. 

Even with these challenges, I got to the gym yesterday, and had a really good workout. Five kilometers on a recumbent bike with decent pedal tension, and awesome pool laps. 

Then, even with the PTSD issues horrendously raging, I baked carrot muffins, put up sauerkraut to ferment, made a good dinner, drove kids around, and got to my Torah class at night.

But by 2AM the migraine was unreal. I couldn't sleep because of the PTSD, although I was exhausted. I had been hoping to exhaust myself enough that I'd sleep like a baby, but that theory didn't hold up. I was up almost all night (as some friends who got messages from me can attest to!), and the migraine was the worst I've had in many months. I think the PTSD got my blood pressure high, and that was the pounding migraine I was feeling. I thought I'd need hospital drugs. But with the magic of Cannabis and some other select pharmaceuticals, I slept most of today, and woke up with the headache at about a "4" on the Richter migraine scale. Tonight, after all day in bed, I'm a bit calmer, and the headache, although not gone, seems at bay.

The report on my hip / femur is that I think the steroid shots helped a little. It helped with the direct hip pain, but my femur still hurts. It feels like a little gerbil is gnawing away at it. I will schedule the MRI's as soon as.... as soon as I can, physically, emotionally schedule them. I am still trying to schedule the one from August from the New York surgeon-- it is causing big problems in the HMO because of the surgeon's stipulation of how he wants the MRI- with 1cm picture cuts through the whole NF abdomen area and upper thigh. That is the only way he can know if he can proceed with the reconstruction/ mesh replacement or not. The HMO can't deal with the special order, though, and for three months I have been trying to schedule some hospital, anywhere in this country, to do this for me. I have one that will, but the HMO doesn't want to pay for that particular hospital. It's exhausting to keep up with. I have calls about this issue at least every other day. This is why I haven't yet scheduled the MRI's that the pain doctor in Ichilov referred me to do. I have to get the first one secured, then move on.

What I am trying to stick to is going to the gym at least twice a week, my Torah classes also twice a week, and aiming for balance. 

With what happened this week triggering the PTSD, that was out of my hands. When pain levels rise, out of my hands (including migraines). But just like I have been aiming for since the first month recovering from NF, I am still aiming for balance. Maybe I should give up on that aim and just accept it all as it comes? I wind up having to do that anyway.

Thursday is the one year date since my father passed away. That's a big one for me. 

I hope he's together with mom, wherever they are. That's all he wanted.

What we want in this world, well, that's not usually what we get.

But in the afterlife? Who knows....

That hole opened up again

First of all, BIG shout out to my loving husband for buying me a mega-light laptop computer so I can continue writing without it hurting my leg! I am now the new owner of an Asus VivoBook S14.
Yay Robert! Thanks SO much!

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

Having already mentioned leg pain...lets launch right into that.

The bone scan and blood tests were all clear, no Osteomyelitis, thank the Good Lord. Because that disease is Very Bad News. I am entirely grateful it's not that.

But what is it?

My left thigh bone (femur) and hip are *killing me*. Oddly enough I can keep working out though. I can do my 5km on the exercise bike, lift weights with upper and lower body machines, and swim. But the swimming the other day left me barely able to walk...not from pain as much as weakness. I've been very weak of late, and I don't understand what is happening. It's the bones themselves that hurt, not the muscles.

My right hip joint is going, too. It hurts while swimming even more than the left sometimes. They've both had their share of surgeries, and have no cartilage, and will both need replacing at some point. I'm not sure which one is more desperate, although day-to-day my left one is hurting more. My femur- it's so crazy- but the femur bone is so painful.

In other news, that hole that took four months last year to close up? The one on my skin graft that kept oozing stuff constantly? Yeah, that's open again, and oozing sticky stuff. You can imagine how excited I am about *that*. Last year it took four months of draining, was completely antibiotic resistant, and only closed up when I used Manuka honey on it.

My infectious disease doctor swabbed it a few days ago, we'll see what bug it is, but I don't think it matters so much. Last year it was totally antibiotic resistant.

I am reticent to use the honey now again, though. Why, you ask? Because last time, one week, to the day, after that hole closed up after using the honey on it (took two weeks of treatment with the honey), one week later was when my belly pain started. I see it as connected. I somehow feel that whatever infection there was dripping out of that hole, it got internalized and inflamed possibly my mesh/clips or whatever else (not seen on CT scan), and maybe it needed that outlet of the little hole? I don't know. I haven't used the honey on it yet, I am traumatized by what happened last year, and don't want a repeat. I don't even know who's opinion to ask about that because it's not empirical data, like 1+1=2. It's just my gut feelings and fears.

So this week I have lined up a visit with my orthopedic oncologist. They are in Ichilov hospital (same place I went a week ago and met that pain doctor). They deal with my left hip/thigh, with the PVNS issues. It's my next stop on this journey to see what is wrong with my leg. It could be that the PVNS tumors have returned. This pain could be from that. PVNS does have a 50% return rate, *but* usually only within the first five years. I had the disease in 2008, and had the tumors surgically removed, and have had no recurrence, so my probability goes way down after that. But not impossible. Just this past year's visit- last June, they changed me from twice-yearly MRI's to once yearly. But I now need another one to rule it out. I am in so much thigh pain, this is the bottom of the totem pole to rule out, because I have a history of it.

I have to do so many MRI's in the coming months, I think I'll likely be sticking to the refrigerator by the end of them. The pain doctor ordered a bunch, the NY surgeon ordered one that I still haven't had done, but do finally have scheduled, and now I'm sure my orthopedic oncologist will be ordering one. I really hate having to fight for close dates for the tests, and then to have the insurance give me a payment voucher for wherever I am having it done. It's a whole process that often takes many calls and waiting periods. And faxes, yes faxes! In 2018 in Israel, we are still faxing, believe it or not.

I need answers though. I have more pain than answers. The abdominal pain is still for the most part behaving itself, thank G-d, but what would happen if I used the Manuka honey and closed up the skin graft hole again? I shudder to think. For now I'm not doing anything. Just swabbing the gook out of the skin graft hole periodically throughout the day.

The fact that I can still work out in the gym is good, but weird, right? Let's pray that stays that way.

OK, on to a new week, and with G-d's help I will be able to give my kids what they need! It hasn't been easy to do that...giving them what they need. Another of my children has now asked for counseling, and I'm working on getting that set up for them. It hurts my heart to see how hard life can be for them, and I do the best I can with the situations.

The migraine situation is a little better since I'm off gluten (Celiac), but I still get them, just not as strong as they used to be. I haven't needed steroids for a migraine at the hospital in a long time. Now when I get them (still once or twice a week), I can take a select handful of pills, smoke some Cannabis, and it goes away by morning usually. But often the next day I am tired...spent...from dealing with the migraine and sleeping problems from it.
And the Cannabis doesn't really take away the leg pain, which intensifies at night. I use Percocet semi-frequently for that.

I PRAY I get an answer about what the heck is up with my leg...it's just so far from normal. There is something hugely wrong in there. And is it connected to the hole in the graft (same leg, inches away) oozing stuff again? More questions than answers.

Finding a new balance

I think that life, post NF, for me, will always need a deeper level of quiet/down time than it did before. I know it's sad, but I can't really listen to music at all anymore, except specifically in a gym, to *my*  music in headphones, if I am working out (which I just started back to do a few days ago!!). It's partially the PTSD- ever since then, I have needed a quiet as possible environment. Now, since I've been mourning my parents for more than two years (they died a year and four months apart), the Jewish laws and rituals of mourning dictate no live music, or listening to music for enjoyment at all. I am OK with that. I have missed some nice concerts I wish I could have gone to, but in general, the quiet is good for me. At Azriel's BarMitzvah we had a DJ (no live music), and when I asked my rabbi about if I can dance at the BarMitzvah, the answer was no, but I could be there. So, I didn't dance (but I wanted to).

Our counselor, on a phone appointment with me the other day, asked how much quiet time I think I need... a few hours a week? A day? A week? I answered I felt like I needed a day per week. But I don't naturally take that time for myself. I usually have to have my body force me into it... which is what is happening today.

Yesterday was Yom Kippur, the holiest day of the year for us Jews. It was a thousand times different than last Yom Kippur, thank G-d! Last year I was in horrible abdominal pain, and didn't leave my bed all day. I did fast (25 hour fast is mandatory for Yom Kippur), but I probably shouldn't have-- I was *sooo* sick by the end of that day. This year, totally different! I was in synagogue almost the whole time, and my fast went pretty well, no big issues. I stood almost all day with the prayers, as is customary, and only near the end of the day did I start to get into some pain. I keep saying that the pain shots got me out of pain about 85%.... but that 15% actually isn't nothing. After a while on my feet, the abdominal pain ramps up.

Then, while already in pajamas ready for going to bed early last night, I got a call from my good friend who's daughter just gave birth a few weeks ago. Her daughter had been having some problems breast feeding, and I have been helping her out when I can. I've spent a few different sessions (2-3 hours each) with her working on the problems. So when her mother called me desperate to help her daughter last night, even though I was exhausted from the fast, I got re-dressed and went over to her. I wound up being with her until about 2am. There were many many issues to sort out... getting her a breast pump from a friend, and since that was on American power, I went to another friend to borrow a power converter, coming back to sterilize the pump parts and take care of the hurting new mommy with a budding breast infection and fever. Not simple. I definitely burned the candle at both ends, but when helping new moms is involved, I have a VERY hard time with boundaries. It's part of why I'm not working. I feel my horn playing, although it satisfies a different part of me totally, is possibly more doable, if I can put boundaries on how much I do on a given day/week. I tend to overdo things.... have you noticed that trait in me over the years?

So, today, I'm down for the count. Been in bed all day, although we have a dinner engagement with family soon which I am looking forward to.

Not only down for the count because I emotionally need it, but my body has been putting up red flags for a week now that I have been trying to ignore. My lymph nodes in my left armpit feel like a golf ball and are painful, I have a little infection on my skin graft (AGAIN!!), and I have to report here a month-or-maybe-more long pain that is getting me worried that something sinister is going on in my left leg again. I can't lie on my left side in bed- my upper thigh- femur actually- hurts. That's where there is all the nerve damage from the NF, but it's a new-ish pain, and not going away. I am slightly worried about an infection in the bone, like osteomyelitis, or something else I don't yet know about. I've lost some range of movement in that leg, too, recently. I decided to tell my doctor all these things today (spending the day in bed can make me come clear about what my body's messages are saying), and I'll start trying to figure out what is going on. Maybe it's just the nerve damage in that leg acting up.

I really want to ignore it all and be not worried. I have that "infection ghost" thing in me, and it's like having a shadow behind you which is 10 times your size and moving like a monster, and you're trying to ignore him all the time. I am so paranoid about blowing things out of proportion that I want to ignore my body's messages. I believe I am inherently healthy, and getting stronger since the pain shots (which, I may only have one more month of enjoying the effects.... we are working on finding an anesthesiologist who can do them here...). Anyway, I put the Manuka honey on the little skin graft infection today, and I'll re-apply it tomorrow (and so on), and hope it'll go away.

So, by hook or by crook, my body takes my quiet day. Ideally I'd be planning it into the week, but when I'm feeling good I don't necessarily need it. As I wrote that, I know it's BS. I always need it. I don't always get it, though. Sometimes migraines force me to take a day, but it's not a *good* day, it's forced by pain, and suffering in a dark room with nobody talking to me. I'm hoping that being 100% gluten free, dairy free and night-shade vegetable free will help the migraine situation. The jury is still out. I've had some doozies recently.

But this passed week I went to the gym for the first time in well over a year, I went grocery shopping, also first time in a year, cooked up a storm for dinners, and cleaned, did laundry, and was basically *in life*. That is a miracle. And I'm grateful.

(recently I re-posted my NF story on Facebook, I'll repost here, too. There are enough people at this point who don't know the whole background, this explains it well. It's from the NFW website, where there are many, many other people's NF stories, and an opportunity to donate to our foundation.
https://tim-hayden-7rt5.squarespace.com/klein-sarah-1/)

Huge good things happening, Thank God

What a whirlwind.
Since I came back from the US a month ago, I literally hit the ground running, getting things ready for Azriel's BarMitzvah, and for the high holidays. Things have been amazing... with the pain shots still in effect, I can live life. I can Live Life. It's been a long time since I could say that for more than one blog post in a row.

One big theme this month has been for me to re-learn how to be in life, and what are my present needs. It's not as simple as one would think. I spent most of a year inactive, dealing with intense pain. Then, all-of-a-sudden, one day, the pain disappeared (mostly). I came back, and without any physical or emotional rehab, just jumped back into life. It has left me at times distraught, needing down time, needing lots of alone time, and extremely tired on a regular basis. My migraines are returning, too, unfortunately. Fairly regularly. I got some good "front line" medicine "imported" from when I went to Colorado... and that is helping, but not sure what to do when that runs out. They don't sell that type here.

I need a lot of down time, I'm exhausted a lot. I need a lot of quiet time. I think I've gotten used to the slower life style of being in constant pain, opting out of many things. Not that G-d forbid I *want* that, no no no. I just have to strike a balance.

I also know in the back of my head that this being out of pain thing may not be "for keeps". It might be, but it might wear off in about a month, too. No way to know. I haven't yet found an anesthesiologist who has the right equipment to do these shots... but I haven't exhausted all my resources yet. And, in the back of my head, the reconstruction surgery lurks, with a big question mark next to it. First I'll get the MRI for the doctor in NY, then we'll go from there. By then I may know if the pain shot effects are wearing off or not.

Moving right along... LIFE! Life is moving right along.

I am now the proud momma to FOUR teenagers! Azriel turned 13, and my oldest is one month shy of being 20, so for one month in my life, I have four teenagers in the house! Baruch Hashem. And what kids they are. I am so proud of each one of them and the stages they are at in their lives, I feel tremendous blessing. Being able to enjoy Azriel's BarMitzvah with him was such a blessing, I don't have words to describe my tremendous gratitude to G-d for making that happen.

There were three stages to this BarMitzvah. The first stage was for Azriel to read from the Torah, for his first time ever, in the synagogue that his great-grandfather (on Robert's mother's side) used to pray. This is a tremendous thing, Robert's ancestors were some of the original settlers of the northern Israel town of Rosh Pina, in 1878. The synagogue they prayed in still stands, and has the original floors and seats, and even some art work painted by Robert's grandfather. You can imagine how special it was for this youngest of the Klein family to carry on tradition to read Torah there. We had very special guests with us there also, Robert's northern cousins who still live there. His oldest cousin is nearly 100 years old, may he be blessed for many more years of health and strength! That hundred year old cousin joined us, and was right next to Azriel when Azriel read Torah. Monumental.

Azriel and cousin Aviv, almost 100 years old, who was born in Rosh Pina.

Dovie carrying the Torah

Ya'akov doing "hagba", holding the open Torah, high, for all to see

The sign on the ancient synagogue

We made an overnight of the event. Rosh Pina is a long drive from our town of Be'er Sheva, so we stayed with some other cousins of Robert's. My brother Peter was with us, as well as Robert's brother Michael. It was so deeply special.

We returned from Rosh Pina with a day and a half to prepare for the big part of the BarMitzvah, Azriel's Torah reading for Shabbat. And a big kiddush (lots of wine & food for many people after services) had to be organized. I had been cooking all week, but it was still a daunting task. But we all did it together. Azriel's Torah reading was beautiful, wearing his new suit. He did the whole portion, the haftorah, and gave a d'var Torah... which is a speech giving a lesson learned from the Torah portion. All and all, we were beaming with pride.

But what a busy time! I had a houseful of family (extended), and out-of-town guests put up with my friends and neighbors. I am *so* grateful for everyone who helped with the accommodations and making meals! I could NOT have done it without you all! Especially the Quinns, Greens, Wachspress's and Shapira's. Thank you with all my heart!!

With the part of the BarMitzvah with the most pressure for Azriel being over, we immediately had to switch into Rosh Hashana mode... it was coming the next day. Lots more food preparation, cleaning, laundry, and hosting family & friends! I started out this blog by saying what a whirlwind, and I meant it!

Rosh Hashana is sort of like two days of Shabbat in a row, so lots of preparations, emotionally as well as physically. Thankfully we were invited out for a few meals, so that made things a bit easier overall.
As opposed to last year when I spent most of Rosh Hashana in bed, this year I was in synagogue for all the services, and got to pray standing up as much as I wanted. It is really like a miracle to me to be relieved of that abdominal pain. A pure miracle.

With Rosh Hashana over, we had one day which was a day of fast. It was welcome after all those big meals!
Then after the fast day was Azriel's big party at the beautiful event hall. That was last night. It was *beautiful*, if I do say so myself. It very much represented the humble boy (man?!) Azriel is, and his friends showed him a great time! One table was full of 13 year old boys. It was quite fun. We used the same DJ which we used for Shifra's BatMitzvah three years ago, and he was spectacular. Perfect for us. The food (which I didn't have to cook!) was fabulous, the atmosphere beautiful and intimate, and having our friends and community celebrate with us is just the best, warmest thing in the world.

I missed my parents, though. I actually cried a lot about it the morning before the party. The mourning was so palpable. I really really miss especially my father (he died most recently). Also of course Robert's parents were missed. I wrote in my speech to Azriel "May the memories of Naomi and Dolph Klein, and Theda and Philip Kashin always be blessed, and may their best attributes be carried on in your life." I didn't dance at the BarMitzvah because of the mourning practises during the first year of a parent's death. That was hard (not to dance), but I appreciate honoring my parent's memories that way.

Last night after the party, we all didn't get to sleep until 2:30 am. Everyone was exhausted but also wound up, and Azriel *had* to open all his presents, of course! What a night. It was so blessed and beautiful, thank G-d. I wrote my speech for him based on this blog entry... it was the blessing I had written for Azriel when he was 3 and a half, and I was scared to go into a big surgery the next day. I wrote a blessing for each of my kids just in case they have nothing else to hold onto from me after that surgery. I was that scared. The speech went into detail about those attributes I wrote about him, and how that is still him. It was a true blessing to take those words written then in fear, and change them to all good, positive energy.

I've had a houseful of relatives non-stop for a few weeks, and that has also been great. The kids have had a continuous supply of uncles (and an aunt for the barmitzvah Shabbat!) and cousins. It's all good.

Today I had the opportunity to help a mommy who had given birth 12 days ago, and was having nursing problems. When I came into my house after synagogue, she was there waiting for me with a puffy face, having been crying, and holding her fussy/crying baby. I had helped her give birth to her last baby (not so long ago-- a year & 4 months ago! The same age difference between my first two), and I was so honored that she came for help. We spent an hour in my bedroom learning about the issues and learning how to fix them. An hour later a happy mommy and sleeping baby left to go on their way. Oh my gosh, it is soooo fulfilling to help moms & babies! Can I start thinking about maybe going back to that a bit?

Can I rely on being out of pain? No. Can I know I won't need that big abdominal surgery? No.
But in a little while, I may be ready to try again... if the pain doesn't return, I'll have more confidence to go forward. If it does, well, I'll have to take it from there. I still have to find someone who can administer these nerve block shots here in Israel.

But for now, a few pictures from the BarMitzvah (taken with my cell phone, not the professional ones yet) to close this. I feel a headache coming on...

Dov giving his beautiful speech to Azriel

Robert giving his speech/blessings to Azriel

My brother Peter singing one of Azriel's favorite songs to him
(Shifra holding words/chord sheet)

Doesn't that smile say it all?

Shifra, me, and my dear friend Miriam

The proud parents

Lag B'omer 2018, coma-versary.

I haven't written in a while.
I haven't felt inspired.
The honest truth is that just living day-to-day is a challenge.

Yes, I am getting better... that is no small feat. My abdominal pain, for the most part, is tons better (but not totally healed), and I can do more. I can be on my feet more, and be in life more. Lots of things are getting better; the treatments I am doing with the Doctor of Chinese medicine (Dr. F) are all encompassing, and the medicines themselves are numerous and, I think, working. The treatments are HARD. I am often yelling out in pain, sometimes crying. It's not for sissies, doing this stuff that we have to do to heal my abdomen (and my hips, knees, ankles, it's all a big mess of scar tissue and things out of line because of all the surgeries). I often have quite alarming bruising, and am left quite wrung out the next day. But eventually the pain is lessening. The man knows what he's doing. It just hurts like h*ll. It's real external surgery... with long needles sometimes, extremely strong hands, suction cups, and all sorts of manipulations. I often grab onto the sheets around me, bracing myself with the pain. Sometimes I can try to relax while what he is doing is hurting, and he can accomplish more when I can. He can break up more scar tissue if I can relax... easier said than done.

My headaches persist, unfortunately. We're working on that. Mostly if I decide I can't take it anymore, I take analgesics when possible (only twice a week so I don't get rebound headaches), and my new "toy"-- a vaporizer for my Cannabis helps out as well. Yes, I finally got my licence renewed, and got what I need.
But there have been some pretty massive migraines of late... a few each week.

So, although there is an upward trend that things *are* improving, I am still often very sad, or angry, and hard to be around. Hard to be with myself, too. I'm going through the withdrawal of my pharmaceutical meds, also. I am on four main medicines (the "conventional medicines"- not the Chinese meds), and they are all in various forms of cutting back. So yeah, my mood is going to waver-- a lot. It will even out after all is said and done, but this is a very hard stage. I am happy to be getting off them, it's been a long time coming. And for the most part (if I don't have a headache) I have been sleeping well, on *much less* sleeping medicine than I have taken since I got sick 11 years ago. I have a schedule of when and what to cut. We are doing it wisely, and with precaution, and lots of support. It's a good goal, but a hard journey.

I also seem to have a type of anemia. According to all my blood tests always, finally Dr. F told me the type of anemia I have... it's not classic anemia, my hemoglobin is OK at 12. It's called Pernicious anemia. Intrinsically it is because of the lack of ability for the stomach to absorb vitamin B12. But simply taking B12 isn't the answer (I've tried that before, does nothing). So again, a milti-faceted issue that we are dealing with in my treatments and Chinese medicines which fortify blood. It could be a contributing factor in my constant unrelenting fatigue, and possibly the headaches.

Tonight on the Jewish calendar marks the day, 11 years ago, that I woke from the NF coma. It is one of those Highly Significant Days for me that I will never forget. My eyes opened, I blearily saw Robert standing next to me. I couldn't feel anything in my body, and could barely move my limbs. I couldn't talk because I was on a respirator. It was frightening. The nurse alerted Robert that my eyes are open, that I am waking up. He turned to me, and started crying, and hugging my shoulders. He told me not to try to talk, and not to be scared. The doctors said I had a bad infection but it is under control. He also told me that that was the very minute that was organized by everyone who was on our CaringBridge website to say a chapter of Psalms together, at this very minute. All over the world, friends and loved ones were reciting the same chapter of Psalms, and that was when I woke up. Did you just get chills down your spine?

Robert then told me it was the holiday of Lag B'omer (as it is tonight), which was four days after I had gone in for the exploratory surgery when they found the NF (which itself was 4 days after the original hernia surgery). That was shocking... four days happened in the world that I slept through completely. I had no idea that the whole country [world, actually] was praying for me... one very long Shabbat. I still had no idea of what happened, what bodily damage I would have to contend with, none of it. Just that Robert told me I had an infection, but now I'm out of danger. I didn't feel any pain... I drifted back into my medically induced coma. Next time I woke up I saw my parents walking into the ICU. They were told things were bad and that they should come say goodbye.... what a 12-hour-flight that must have been. My mother threw herself on top of me crying "my baby, my baby". I was awake, they had just taken out my breathing tube. My father immediately started grilling Robert for answers.... what a thing. I have so many memories. They all come flowing back during this time period. My body remembers, my mind remembers. I wrote about other details in my book, which I hope to start up writing again.

I guess what I really want to say is... is... so many things. I want the end of my book to be that I forgive the surgeon for his mistakes (plural). But that's not my reality. I can't forgive him. I want to, but I'm so embittered by what happened to me, which he could have prevented. That just may have to suffice for the end of my book. We'll see when I get there.

Even though my pain situation is improving, I still struggle every day to: get out of bed, to eat properly, to deal with my fatigue on a constant basis, to deal with migraines coming & going and the aftermath there of, I try to do a yoga routine. I take a zillion little pills three times a day and pray they will help my body to have balance, to heal. My abdomen still hurts, my skin graft causes me problems, it's a constant thing. I can't play my music, I can't help birthing women. I lost so much.

I pass a "store for rent" sign near where I live and fantasize about opening an all-your-needs here birthing store.. baby carriers, pre-natal classes, lactation consulting, doula services, breast milk pumps, all of it. I have so much to offer. 74 meters is perfect. But the thought goes right out of my head; I can't be consistent. One day I'm good, the next I'm down with a migraine or horrific pain issues. I have so many dreams. I still get messages about playing in orchestras. Every day that I think "this will be the day I play horn again", something happens. Sometimes it's with one of my kids, but usually it's a problem with me. This week I went to Jerusalem for two treatments... that also eats a lot of time (and money).

My whole life & time is taken up by trying to get healthy, trying to stay in the world. You guys who get to work your careers, or jobs, and have a life that is quite routine... you can't imagine. You can't imagine what this life is like. Constantly not knowing what is around the corner, not knowing if I stay up that extra hour will cause a migraine the next day. Not knowing if I'll be down the next day or up, and for how long can I expect that? My kids don't get a mom who is consistent. The other day I had to shut everyone out for an entire day and night because of the migraine. This happens weekly. It's a crazy life, and yeah, I feel sad about it. I can't come to grips with it, even 11 years later. In the beginning it was even worse- hospitalizations every other month for infections, surgeries on average once a year, but there were years with two or more. Now life is much quieter than that, but I never got it all back. And I don't know if I'll ever really be out of pain. Dr. F is doing everything that can be done, and it's helping in a tremendous way. But my body got hit bad 11 years ago, and with it, my soul also.

It's supposed to be happy that this is the anniversary of when I woke up from the NF coma... in my NF support group it's called a "re-birthday". But it doesn't hold strength and courageous feelings for me like it does for some others. It holds the hard, hard memories, all of them, and the tremendous sadness of loss.

Retreat, Day 7

This is *SO* interesting! Amazing. And these treatments and medicines have such intellectual and practical integrity. The medicines are done with muscle testing, the body says what it needs and what it doesn't. Doesn't matter what the patient or practitioner think needs to be given. The body gives so many clues.

For instance: For the past three days, my digestive pulses have been pretty regular and predictable. This morning, however, they were all off. The doctor immediately asked me what I had for breakfast. What Western doctor takes your pulse and then asks what you had for breakfast? So I told him; spelt bread and hummus. I hadn't had spelt bread since Shabbat until this morning. He said, ah, that's it-- I'll bet your sensitive to spelt. Then he takes out his samples of all the 7 grains, and yeast as well. More muscle testing to see if I have sensitivities or allergies. Guess what? The only grain I *am not* sensitive to is barley! Spelt, yeast, wheat, rye... outta there. But the good thing is that there are ways of desensitizing the body if you want to be able to eat these things. So, seeing that Robert bought me a bunch of spelt matzah for Passover, Dr. Frischman said tomorrow he'd desensitize me to spelt. After Pesach we'll do yeast. Now how cool is that? Just by the pulses we made more discoveries.

~ ~ ~ ~ ~ ~ ~ ~ 

Deep into the middle of this intensive two-week treatment plan with Dr. Frischman, we have been often encountering "red-herrings" as we try to solve my pain mystery. What seems to be consistent, though, is an infectious process is going on. Still. Doesn't seem to be responding to the Chinese antibiotics, though, even though my body tested positive for that medicine.

What is also going on is a hint that we got from the results of the MRE. There were a few findings that raised an eyebrow... one such finding is unusual cysts on my right kidney (where I often have back pain). The cysts have some sort of separation, well-defined shape, and the evaluation recommended I follow-up on that with a nephrologist. But that's not likely to be the source of all this abdominal pain. But it is a piece of the puzzle that Chinese medicine can address. I'm not worried about that.

The other finding is a little stranger in nature... an anatomical anomaly. Apparently my cecum (the part which comes between the small and large intestine) is apparently misplaced... and stuck to the back side of my liver. It is supposed to be lower- the appendix hangs off the cecum-- and that is usually lower right abdominal quadrant. In me, however, it's way up high, causing an inverted loop effect in my intestines. Now *that* could be causing the pain. But how would that happen? And the other question is, when I had an appendectomy in 2008, was the appendix and cecum in the right place? Robert actually tried to call the hospital to see if he could get in touch with the surgeon for that surgery, but that surgeon left Israel a while ago. The hospital said they'd try to get Robert his contact info. Of course he's done 6,000 appendectomies since mine, so what are the chances he'd remember mine... but on the other hand, we have the NF in my story (and remarkably visible on my abdomen, of course), so it's possible it may have been slightly more memorable than your average appendectomy to him. Dunno. So far that's a dead end, so we don't know when the cecum shifted positions, but suffice it to say it's not where it's supposed to be.

That can explain why my liver is often not healthy regarding it's pulses. It's got the cecum stuck to the back of it, doing digestive things. It might also explain my pain.
Dr. Frischman is not fazed by this finding, he believes he can manipulate it to break up the adhesions and coax it back into place, not unlike moving a baby in-utero from a breech presentation to head-down. I'm sure he's right. But today was the first time he really went for trying to do that, and WWOOOOWWWW, it hurt like h*ll. I can handle it, though. And it's better than surgery.

Having said that, I have decided to go through with a surgical consult which I lined up a while ago, here in Jerusalem in Hadassa Ein Karem hospital, tomorrow. It is with someone highly recommended. I don't see myself going into surgery any time unless absolutely necessary, but I will get this doctor's opinion on my situation, and I have the MRE results now also. Information from other points of view can sometimes shed light in a different way, and can be useful. Or not. Nothing to lose.

It was interesting to put to the test going through a major migraine here, on Sunday. I hadn't slept enough, and had a difficult Shabbat at home (also with a migraine on Friday), so when I arrived here on Sunday, by afternoon my head was about to spiral out of control. At home, I'd take analgesics, Cannabis, and pray that they work. Here, NO Analgesics. Strict doctor's orders. OK, so the migraine was getting worse and worse, and it got to the point where I'd normally have gone to the hospital if I were home... it was the point of no return, too much pain, I can't take anymore. But I was here, at the Frischman's house, not taking analgesics, and certainly not planning on going to the hospital for steroids. I had to wait my turn for my treatment, he has other patients. But even between patients, and sometimes during other patients, he'd work on me. Either with acupuncture needles, head pressure points, and Chinese medicines. It wasn't working. At one point he put a needle behind my jaw, kind of behind my ear, and it was excruciatingly painful. That was a hint.

"the upside-down machine"

parallel=weightless. It's AMAZING.

(This machine pictured is where I spent hours of the migraine the other night...)

Seems that my jaw is misaligned. All that pulling and rearranging my teeth and the orthodontics when I was a teen was either for nought, or was done wrong. This can be a major contributing factor in my migraines!

Dr. Frischman spent a tremendous amount of time with a rubber glove on, fingers in my mouth. It was excruciating. He literally realigned my jaw, painstakingly, slowly, methodically, in my mouth. I can't believe that happened, who would ever expect that? It was not easy... not only painful for obvious reasons, but also triggering old traumas of the mouth and breathing ability. I told Dr. F about all that, and he walked me through it. He stopped when I gave the sign to stop, continued when I gave my green light. Amazing amazing amazing. Such tremendous respect for the patient, I've never encountered this. And I've encountered A LOT of doctors.

It didn't take away the migraine, but it took it down a significant notch, with no analgesics, cannabis, or hospital. After my intensive treatment Sunday night, I was able to go to sleep with my regular (still half-dose) sleeping meds. I woke at 7am still with the headache right behind my left eye. I turned over and went back to sleep. I slept on and off until NOON, when Dr. F's wife came to wake me so I could get in a treatment. The headache was what I call "remnants" at that point. After the treatment, I ate lunch, then went for a walk in the sun again. After the walk, the headache was completely gone.
It is the first time, I think ever, that I got over a real hardcore migraine without analgesics or a hospital visit. It was with the support and help from Dr. F, his wife's nutritious food, and fresh air. And lots of good, restorative sleep. I sleep very well here. Thank Gd. Tonight I begin the next stage in cutting my sleeping medicine.

There are so many miracles happening here, it would take at least 4 more pages to document it all. It's all just remarkable. I have been feeling energized and with a new feeling of wellness that I haven't experienced in a LONG time. The abdominal pain remains an issue, but it is overall on a healing trend. It's going to take time; it took a long time to get to this situation, it's not going to go away immediately. But the turtle wins the race, right? There are so many issues to address, it's all interrelated. I've been a walking ball of symptoms for so many years, and here we are putting the pieces together. And much of the picture is pointing to a low-level infectious process that has been rearing it's ugly head over the years but never gone away. It may be stemming from the NF, or possibly from the mystery infection I had which led to my c-section birth with Azriel 12 years ago. I think it's from the NF, Dr. F thinks it's from the c-section... doesn't really matter who's right. All the cellulitis episodes, the infected appendix, the Bartholin cyst, and the open small wound on my skin graft last spring which took four months to heal, which lead to finally healing and immediately thereafter this abdominal pain starting up in Spetember. I have a good immune system, which is why it hasn't done more frequent damage, but we believe there is still an infectious process going on, and that is the source of all my ills and pain these past 6 months.

Keep praying, keep hoping. I have strong hope and belief that we are going to get to health. I believe that I will be healthy. Read that again... when was the last time I could write that???

As you can imagine, being sick for almost 11 years has taken a huge financial toll on my family. I've written about that before. These two weeks of intensive treatment are also costing an arm and a leg, so we have decided, with the support of family and friends, to start a fund-raising campaign to help defray the financial burden of these treatments, which, of course, are not covered by insurance. I'm putting the link here in hopes of two things: One that you feel free to please share this link on facebook sites or to friends, or blogs which you feel would be appropriate for this type of fund-raiser, and two, to give us the chance to humbly thank you all from the bottom of my heart for any support you can offer. I've had this blog for 10 years, almost 11... and this is the first time I've ever done this. It's that big, that important, and that necessary. And I have tremendous hope for the first time since NF.

Robert wrote the story for this page:
https://thechesedfund.com/cause/restoring-talent-buried-by-pain

May everyone have a wonderful holiday of Passover, and Easter!
May this Passover free us all from whatever personal slavery we have been wedged into this year. New hope really can come with springtime, can't it.

Retreat for treatment; it's time.

It's been one hard week... but a very interesting outcome.

Tuesday I had a treatment with Dr. Frischman in Jerusalem. That went well, and as usual, I walked out in less pain. But unfortunately the abdominal pain comes back all too soon. I had a headache that evening, also, and he tried to empty my lymph nodes and do some cranio-sacral work on my head to alleviate the headache.

I still had the headache when I left, but it was duller. I was able to get to sleep. But I woke up with the same headache, stronger, on Wednesday. It only intensified throughout the day. I tried all the natural methods he taught me, and it was just getting worse and worse. In the evening I had some Cannabis, hoping that would work, and it didn't. At midnight I was beside myself with one of the strongest migraines this little head has ever dealt with. I had nothing to calm down the pain. I needed the dreaded "cocktail" at the emergency room.

That was an ordeal. The ER was busy, and my migraine was not a priority. I was yelling in that bed, writhing in pain, literally shrieking out loud sometimes, and it still took two hours for them to get me my medicine. It is clearly written in my chart, *by* my neurologist, that if I come in with a migraine I am to get these medicines immediately. It wasn't until Robert finally spoke to a doctor who was familiar with my neurologist's protocol that things started to move.

When I finally got the dose of Prednisone I needed, they put it in a "push", all at once into my arm, instead of hanging it with saline to go in slower. That caused an awful reaction in my body, I felt that there were pins and needles and ants crawling all over me, immediately. That feeling was horrendous, but only lasted about two minutes. It felt like forever, though. I never got that medicine in a "push", and I will ask that that not be done again. It took the standard 40 minutes to take effect, then my migraine began to subside. I had gotten also a shot of Phenergan, a relaxant/sedative, and was finally able to un-tense my muscles and rest. I fell asleep for a while before we were discharged. Got home at 5am. Robert, bless his soul, was up at 7 to get the kids out to school. I spent Thursday in bed, still with a low-level headache. Stronger than remnants. Thursday night came and the headache increased in intensity. I got scared we'd be headed back to the ER. I decided to dose myself up with what I could and see if it made a difference, if I could get myself to a drug-induced sleep. It took a lot of drugs (I hesitate to tell you what I actually downed that night!), and was able to sleep it off.

In the meantime, I'd been in touch with Dr. F throughout this all.

He and his wife had a suggestion for me, and it was one I had been thinking of myself, but didn't think anything like that would be feasible... They proposed a two-week intensive treatment, at their house in Jerusalem. They said they had done this before with patients while they were in the states, and it can work out well for patients who need intensive treatment. It means staying at their place, in a guest room, and having two treatments a day, while also having my nourishment needs taken care of in the best possible way, and me being able to rest. No driving kids around, no errands, no cooking, etc. It sounded exactly like what I had envisioned. I felt that this would be the best way for me to know if my body will be able to respond to the treatments and not slip back into pain mode all the time.

It's a financial burden, but Dr. F's wife suggested to set up a chessed fund (Jewish charity giving) to help sponsor me to do this. Yes. A plan was formed.

Friday morning I went to Jerusalem, but I didn't drive myself. I knew that could trigger the migraine again, and also my abdomen hurts when I drive too much. Our dear friend was ready able and willing to drive me there (in my car) round trip, so I could lie down in the passenger seat, relax, and be in less pain. Thank you so very much, G!! That treatment Friday morning was very very good for me. It was all about the headache. I am so grateful to Dr. F for giving me precious time on a Friday, which he usually doesn't see patients.

Shabbat came and although the abdominal pain wasn't any easier (it was harder, actually, Friday night), I got some amazing, restorative sleep. It was probably still my body recovering from the two and a half day migraine and all the overdose of meds. I slept all night, all morning, ate Shabbat lunch, then slept another 4 hours in the afternoon. And I'm tired again now. I just wanted to update with these changes that are about to happen.

Tomorrow morning I have to make my way, with my friend, to the northern city of Kfar Saba for the MRE test on my small intestines. I'm nervous about it, and considered canceling because I am doing these alternative treatments with Dr. F. It is an MRI, but of the small intestines. The test was ordered by my gastroenterologist, because, well, undiagnosed pain... We have to rule things out. I think it's important for me to go through with it (it means getting contrast chemical into my body, which is bad for kidneys, and we are trying to clean me out of toxins), because it's just more information we'll have about what might be going on in my belly. If I do wind up going to Mayo clinic (I still haven't canceled or postponed... yet?) I'll have this test to show them also. Mayo would be April 9th, if I don't postpone or cancel. I think this two week period that I will be having intensive treatments with Dr. F will be very telling for me whether or not I will go through with going to Mayo or not.

It comes down to if the pain can be taken care of with Chinese medicines and treatment, or not. I need to know this. I am still predominantly out of commission, I am still very much in pain when I am on my feet, things haven't changed. But if my body can respond in these two weeks (I'll be coming home for Shabbats), then SCORE, I can avoid invasive treatments and/or surgery. If not, I'll know for sure.

The balance of Western medicine and Eastern medicine is not an easy balance-- they often seem to cancel each other out. I am learning so much from Dr. F, and trying to make some very important changes. I will stick with him no matter what needs to be done. But the question remains: can this get me out of pain, permanently. I cannot go on living like this, it's not OK, I'm in too much pain, all the time.

So, big icky test tomorrow, it'll be a long day. Just the traveling alone is long, and doing the test will wipe me out (I have to be fasting, and "clean myself out", drink contrast dye, etc). But it'll be *done*, crossed one box off on the list. Monday morning I'll be driven by my son Dov, who will be home on a month-long vacation from Yeshiva, to Jerusalem to start my course of intensive treatments at the Frischman's house. It'll be so good not to have to worry about the kids schedules and immediate needs... Dov will be home the whole time I won't be, and he can drive them places and help make meals. It's good timing. Then we'll all be home together for Passover. And by then I'll know I'll be able to make a decision about the Mayo clinic. I know this all sounds complicated, but I think it's systematic, and all happening at the right time. I pray to G-d for clarity of all these decisions.

Now I'm going to sleep.

I just wanted to catch you all up to speed...

I'll be updating when I can/want/need to. You know that.

We'll get answers. Somehow. It's going to become clear. I pray.

Update from The Front; medical and spiritual

So guess what? You can't trade migraines for tummy pain. They aren't the same. These past few weeks have shown me that my migraines are slowly creeping back into my life. They started very low level, like just a niggling headache. But in the past 4 days or so they have come back, pretty strong, but not the strength they were last spring before I went on the Topamax. But I no longer doubt that it could get to that, even while I'm suffering with this abdominal pain.

I am going to try to deal with them on a per-time basis, and raise my b-6 vitamins & magnesium. I am going to try to not go back on Topamax, even though I had NO migraines the entire time I was on it. I just think the fewer medicines the better. But if they get really bad, I reserve the right to go back on the Topamax.

Present status report:

1. Waiting to do an MRE, which is an MRI of the small intestine (ordered by the gastro).
2. Waiting on a recommendation for a surgical consult in Jerusalem's Hadassa hospital, with someone not affiliated with the surgeon who put in my mesh & clips, so I can get an objective opinion of my CT scan, if things are really OK or not regarding the hardware.
3. presently doing Homeopathy, acupuncture, and will soon start Chinese herbs.
4. Have started a full vitamin regimen (+ probiotics, Tumeric, other interesting things) from Dr. S, including fiber to calm things down in my intestines.
5. Have implemented many changes in my diet, which are hard to keep, but I'm working on it one day at a time (also from Dr. S)
6. bought a hernia belt at a medical supply store: it reduces the pain when I wear it. It shows me that most likely the mesh is failing, and irritating my stomach. It's uncomfortable to wear for the long-term throughout the day, so it's not a long-term solution, but I can walk for a longer stretch of time when I wear it, it helps lessen the pain. It is a wide, huge band of elastic and velcro. I think that it is holding me in when the mesh is not any longer doing that.
7. Got a date to go to the Mayo clinic in Rochester Mn, if Israeli medicine hasn't helped me by April 9th. I will go there for a week of appointments and evaluations/tests, and see what happens. It gives me over a month (and after Passover) to do these other consults here and see if I can find a viable long-term option here, in Israel, with free medical care. Going to the Mayo would be predominantly out-of-pocket, and ideally I hope to avoid that, obviously.

I feel really backed up against a wall. If the mesh is indeed failing and causing the problems, what the heck am I supposed to do? I think I said last time- reconstruction surgery would involve a muscle graft for my stomach wall muscle, and that can't be done while I have only a thin skin graft covering the whole area externally. Without the mesh I'm in trouble, but as [I suspect] it is, I'm also in trouble.

I pray that the right conduit comes from Hashem (G-d) to propose a viable and safe long-term solution. As I mentioned, I am waiting to hear from a few different sources about a recommendation for a surgeon in Jerusalem unaffiliated with my surgeon from Tel Aviv.

Meanwhile, things remain very difficult. And painful. And I'm trying to take this all one day at a time.

I learned from a religious doctor, who I have been listening to his classes on the internet, that one cannot connect with Hashem when one is in pain, hungry, or sick. I am in pain, and I am trying to connect with Hashem, but it's not happening so frequently. I found myself the other day (Shabbat) with a migraine, abdominal pain and digestive pain, trying to talk to Hashem. I just called a meeting with The Boss. I found when I called Him Abba (my father), I could talk freer. I thanked Him for all the million things there are to be thankful for. I put in my requests for other sick and hurting friends. And asked for Him to send me the right conduit to help me out here. I was proud of myself for making the effort to talk to Him... I haven't been feeling so spiritually communicative of late, for obvious reasons. But I'm trying.

Life is happening and passing me by at the same time. Let's pray that a reasonable solution will come down the pipeline to me from the right person, and soon. I'm willing to do surgery if it means long-term benefits. Thing is, I thought putting in the mesh and clips *was* the long term solution.

NF has really shaped my life these past 10 years, for the good as well as for the difficult. I don't understand Hashem's ways. I imagine my parents around there with the all-knowing wisdom I imagine one may get after death, and I wonder what they see when they are looking at my life from their perspective now. I asked Hashem to make sure they get together, if they haven't found each other yet (Dad's only been there for a few months, I don't know how long it takes, right?). I asked Him to let them come visit me in my dreams. I haven't seen them yet. But I hope they will come visit me. I miss them.

Hard times, hard times. Chanukah 2017

*Coming to you from Be'er Sheva Israel on the third night of chanukah*

I got the results of the MRI.
From the technician who was reding it, it looks like fibroids in my uterus are the problem. Nothing else stood out, except ovarian cysts, which I knew about. I'm going to see Dr. Mashiach on Monday, and we'll see what he suggests as treatment.
It's hard for me to believe that so much heavy pain is from fibroids. I mean, a lot of women have fibroids, it's fairly common. But I am in so much pain I can barely function. And why would this start suddenly three months ago? I did some reading on the internet, and I do see many women have heavy pain with fibroids, but somehow I feel like something worse is going on.

I have taken care of the ulcers and the duodenitis, and I went off the Topamax migraine medicine. But the pain persists. Originally I thought that going off the Topamax did help to reduce the pain a bit, but I realized, when I got back to Israel from my NY trip, that I was in less pain in New York because I was sitting shiva for my father. I wasn't making food, and I wasn't serving people. The opposite, I was mostly sitting around, and people were serving me. When I can rest, the pain is less. As soon as I got back home and got back into my regular life, all the pain came back in all it's glory.

I haven't decided yet if I'll go back on the Topamax.... I'm waiting to see what my migraine situation is. Today might be the first one; I feel one in my right eye ramping up. Let's see if Excedrin can stop it.

I gotta say, I still feel like we're missing something. The whole center of my body hurts. And even when I'm resting, when the pain lessens, it's a strange feeling that things are just wrong, I can't describe it. It feels like something is dying inside me.
I'll write again after my appointment with Dr. Mashiach.

In the meantime I made an appointment for next week to see my pain specialist (Dr. Z). I haven't seen him since I went off the Fentanyl almost three years ago. But if I have to go on living this way, I need pain medicine. It's just too much pain for too damn long. I'm suffering so much, and opting out of so many things in my children's lives, it's just too depressing.
It's not going to be Fentanyl, but I'm sure there are other options. The Percocet doesn't really help, and it makes me nauseous.

I saw my othopedic oncologist last week in Ichilov hospital. It was my bi-yearly follow-up for the PVNS. I left with more referrals for MRI's- for my thigh joint and my famously swollen and painful knee. We need to check if PVNS is in the knee now. So I have to set up those MRI's and go back to the orthopedic oncologist in 6 weeks with results.

That's the news... here's the weather...

66 degrees during the days, light rain around and about. Cold at nights....

No, that's not what I meant...

I meant emotionally.
I'm really not doing well.
My Dad died three weeks ago, and I'm in constant pain physically.
I have to keep living, I have to keep being in the world, I don't want to die, but I don't want to live this way. (just grabbed a tissue). I think about starting some sort of healing through Chinese medicine; I did a little reaching out and have a recommendation. I haven't called yet.

My life force is gray. It doesn't shine anymore. I have so much in me that wants to shine, but I'm in constant pain. I'm terrified that this is my normal now. I thought the pain I had before this was my normal, and I made my peace with it. But this, this is not normal, and I have no more peace to make with it.

It's not a good place in life for me. Let's hope for a working treatment plan on Monday. Let's hope for a pain-free Sarah. I don't even remember what that feels like. I honestly do not know my life without pain since I had NF.

And today I think is the first real migraine since going off the Topamax. It's coming on strong now.

May this holiday of light bring light to everyone, and may I be able to bring you all light very soon.

I can't do this too much longer

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

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

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

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

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

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

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

It's very lonely.

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

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

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