New pain doctor, debulking my expectations from life

My laptop is too heavy for my lap. My lap now consists of my right leg, and not touching my stomach. Not so simple. Robert went out and bought me a lighter laptop, but I need a smaller and even lighter one. We'll exchange it. I do use a pillow/desk with it when I write in bed (almost always), but that isn't so good anymore either. Too much jutting into my stomach. I have to revamp the system... my left thigh just hurts too much.

And we don't yet know why.
The bone scan came back negative for Osteomyelitis. Which is a very good thing. But we still don't know why I'm in so much pain. Remember last year how all year I didn't take any pain meds with that abdominal pain? That is because it went away when I lied down, so it was livable. This pain in my thigh does not go away, ever. Lying down sometimes makes it hurt more. So, unlike last year when I was so against taking pain meds, I am now taking the lowest dose of Percocet, almost every night, so I can sleep. Otherwise (and even with the Percocet) I wake up in pain. I often wake up if my body went to lying on my left side unconsciously, it hurts *SO MUCH* if I do that. I wake up in agony. Another Percocet, perhaps with a half sleeping pill, and I'm back to sleep.

Last week I went to the pain clinic in Ichilov hospital in Tel Aviv. That is where I have my orthopedic oncologist for the PVNS, but I'd never been there for any other medical care. Until this visit to the pain clinic. My primary care physician heard that they may possibly be able to do the pain shots in my abdomen if these wear off, so she got me an appointment there.

I walked into his office, and he didn't even make eye contact (oh, one of those types of doctors, I said to myself). I handed him my referral. He read it carefully. Then he asked for the Mayo clinic paperwork. I handed that over. I told him I can translate any English if he needs, he said "no need". Still does not know what I look like. He then asked me, still without looking at me, what is the actual diagnosis? I said, well, there isn't really one. It seems that whatever the problem is, is in my abdominal wall muscles because putting the steroid shots there took the pain away. It could possibly be my mesh and clips in there, and this surgeon in New York put forth a plan for reconstruction, but I haven't decided yet if I'm going to do it or not.

He asked a bunch of more questions. We talked about my migraines, and when he asked if I ever have numbness in my appendages, I told him about the last time I was practicing horn every day (over a year ago), I lost feeling in two fingers on my left hand, and it only came back after I stopped playing and made many visits to an osteopath. I didn't know if that would happen again if I started playing again, because of all these pain issues I haven't been able to play.

He was looking at me by this point. We were talking. I was relieved to see his eyes and compassion.

This is what he summarized:

"I can do those shots for you any time you want. But that is not the goal... I don't like at all that there is no diagnosis here. You went all the way to the Mayo clinic, the best of the best, and came back with pain shots and no diagnosis. That is disappointing. I am not satisfied with that. I am sending you for lots of tests... including a whole body MRI. I want to rule out spinal cord problems."

(I told him, but I don't think I've told you, that I have had spinal pain, including one right rib, for months now. I didn't talk about it though because, well, it's not screaming for attention, It's just there.)

He sent me home with a slew of tests, that even until now I have not looked over. The paperwork is still in my bag unopened. He mentioned MS, but said not to be scared, he didn't think I have MS, but he wants the tests to be done thoroughly and correctly, so he wrote "suspicion of MS".

So that's where things stand. I told him about my leg, also, but at that point in the week I didn't have the bone scan results yet. Now I do. He said that anyway bone scans are cursory, they don't tell much. He wants MRI's, and I don't know what else. As I said, I didn't look at all the referrals yet. I can't handle it. I honestly am so sick of doing tests, and setting them up, traveling to them, messing up a day or two depending on the backlash (migraines).

I am beginning to realize that my goals of playing horn again, or being a birth coach again are not realistic goals for me. My goal has to be getting healthy and staying healthy (as if that has been in my control). It's a full-time job. My kids need me a lot... it seems more than ever. Babies take a lot of time and you think things will be better when they are older, but the hardships emotionally take a lot of physical and emotional energy. And I'm of course still driving them to activities and bringing them to their appointments too. Eye doctors, hair cuts, teeth cleanings, dance classes, you name it. Even Shifra needed an MRI and I had to drive to Rechovot for that last week. It doesn't go away when they have a bus card. They still need me full time. They need good food all the time, too. Lots of it. Four teenagers. And I want to be there for them, and I am in pain. It's incredibly hard.

I managed to go to the gym once last week. I am aiming for more than that, but the pain in my thigh just depresses me and stops me. The gym has a pool, though, so even if I feel I can't work my muscles on ground, I can go into the pool. I LOVE water, and most of you know I'm a swimmer (I had a lifeguard licence back in the day!). So getting to the gym is a priority, and being there for my kids, That's all I can do with all this other stuff going on. I'm just slimming down my life, and expectations, so life may be less disappointing.

That's the update. More pain, no answers.
I am scared out of my mind that this thigh pain will continue on and on with no diagnosis. I don't think I have it in me to do that again.

Out of the frying pan, into the fire?

Dear G-d, what is it you need from me to do that I am not doing? I know I'm not perfect, but why can't I enjoy pain-free days for more than... what, a few weeks? two months? We're talking 11 years here. Please reveal to me what it is you need me to do and I'll do it.

It was brought to my attention by a doctor friend of mine that steroids can depress the immune system. I mean, I knew that, existentially, but it didn't occur to me while getting these steroid shots into my belly in July. And in the paper that I signed at the Mayo clinic to agree to the possible complications and warnings about the procedure, that factoid wasn't mentioned.

So that may have been how this [still alleged] infection set in. My femur is still hurting all the time, and I need pain meds at night because it gets worse at night.

I saw my infectious disease (ID) doctor today, and I hadn't seen her since spring 2017, when the little hole in my skin graft wouldn't close up. At the time, she gave me oral antibiotics to combat that infection. They didn't work. That is the hole that closed up only months later when I used Manuka honey on it.

She said "so what's been going on since then?"

(thought bubble over my head: oh, nothing, just getting lots of manicures and pedicures with all my luxurious easy days...)

 She concurred that there can be immune challenges after steroid shots. And if, like I suspect, that the infection has been there for a long time (year & a half) and just recently settled in the bone (which isn't a healthy bone to begin with because of the surgeries and arthritis), it may be that the steroids channeled the infection to the weakest point. I don't know.

It leaves the question of if & how to repeat the shots, kind of hanging in the air.
And quality of life questions, but you know that already.

I have an appointment with the pain clinic in Ichilov hospital in Tel Aviv on the 10th to see if they can do these pain shots. I don't know if I'll have an answer from the bone scan yet by then, though.

It will become clear soon, I hope. I now have a bone scan scheduled for Sunday morning (the 7th). The ID doctor wants me to come back with the results a week later. If the results show positive for inflammation/infection, the next step isn't at all fun... a bone biopsy. Now, I was with Sabrina (of blessed memory) when she had a bone biopsy once... you could hear her yelling two hallways away. If I need a bone biopsy, I'm going to call my private orthopedist to do it in a private hospital (yay, auxiliary insurance), and ask for twilight sleep. No way will I go through that awake like I witnessed Sabrina going through. I would need the biopsy to confirm infection, and more specifically which bug. I have so many antibiotic allergies, we'd have to test for a bug to know how to direct the choice of antibiotic. Then, fairly long-term antibiotics. Surgery? Could be. But I can't "go there" with that thought.

I know that a few days ago on the holiday of Simchat Torah, I came to synagogue and danced (with the women) to our whole community singing Torah songs. I danced because last year I was in horrible pain and stuck in bed, and next year Who Knows. So, I danced a few days ago. Only could stand it for about 10 minutes, but I danced. For the Torah, and for Hashem.

nuclear fallout from NF

I'll start with a timeline to try to explain what is going on here:

Last spring/summer (2017)- open small wound in my skin graft that stayed open and draining for four months, resistant to all antibiotic creams and oral antibiotics, only closed up when I used Manuka honey on it for two weeks.

Sept 2017- one week after the little skin graft wound closed, severe abdominal pain sets in.
I started doing lots of tests, nothing shows up in my blood work. Colonoscopy showed ulcers and duodenitis, I took medicines for that, no change in the pain level in my abdomen.
A CT scan and a few surgical visits, nobody will touch me, but maybe the problem is with the mesh in my belly, but nobody could say for sure.

That pain stayed with me almost all year, and, as most of you know, life was hell.

July 2018- Mayo clinic- received shots into my abdominal wall with steroids, and after 10 days I started to feel relief from the abdominal pain.

August 2018- rejoiced in life with minimal pain, tried not to worry about the future. Celebrated my youngest son's BarMitzvah. It was a tremendous blessing. I even started using my gym membership.

Literally had no time to research who can/will renew the pain shots after the three months effective prediction from Mayo clinic. There have been many holidays this month, and Azriel's BarMitvah, I haven't found anyone yet to do the pain shots, but I have a few possible leads from phone calls my doctor made on my behalf.

September 2018- Yom Kippur- fasted for 25 hours, standing for almost all prayers for an entire day. Then, after the fast was over and I ate, I admitted that the abdominal pain was returning, but I thought maybe it was just because I had fasted and pushed myself. That evening my friend's daughter called me with an emergency breast-feeding issue, and I stayed helping her until 2am.

Also September 2018- my thigh bone (femur) in my left thigh, where almost all the damage from NF & PVNS has been around, begins to throb and hurt. I notice I have limited range of movement. A few weeks later a new sore starts to try to open on my skin graft... and my thigh pain gets so much more intense that I can no longer sleep on my left side. If I wind up on my left side, I wake up in pain in my femur bone. I didn't let the skin graft sore open, I immediately put Manuka honey on it, and it is still red but not open.

My femur hurts all the time now. Over the course of a month it has intensified.

I think to myself, either this is the PVNS returning (unlikely because my last MRI last June was clear), or an infection. Or, maybe the muscle and nerves surrounding are acting up... my whole left thigh has been numb since the original hernia surgery when the lipoma was excised. 11 years, numb upper left thigh. But strange things happen with muscles & nerves that are damaged... who knows. I decided to report this pain finally to Robert, then to my doctor a few days ago.

I realized that the pain is *in* the bone itself. That's what it feels like. And since I had a soft tissue (skin graft) infection for so long last year, draining, antibiotic resistant, and now one tried to open up again, I think to myself I may have Osteomyelitis... when infection sets into bone (and that infection will seek out a "sinus"- make a sore or wound- occasionally to let drainage happen). But then I thought to myself, "nah, I have no fever, I can still walk OK, it can't be..." Then I Google'd Osteomyelitis without fever. Bingo. All the symptoms line up, and adults hardly ever have fever with osteomyelitis.

Then, [I think coincidentally] yesterday and today I had/have fever. It's probably a "regular" bug and not more symptoms of possible osteomyelitis, but who knows.

I may have had this for possibly years. It can often go undetected, or un-diagnosed.
Treatment for Osteomyelitis? Well, first we have to diagnose it. I need a bone scan, then possibly a bone biopsy. I have So Many antibiotic allergies that it is very complicated if I'll need antibiotics. But the treatment is intensive antibiotics for many weeks- some say 6-8 weeks, often by IV. And I hate to say this, but treatment often includes also surgical removal of infected bone. Pieces thereof, or the whole bone. We're talking femur here... I don't even want to utter the word that that implies.

At this point, I need immediately: an infectious disease doctor, my orthopedist, and a bone scan. In short, I'm in trouble,

Oh, and pain shots in my abdomen.

Those are the facts, from The Front. I cannot add my own commentary more than I have. You don't want to know.

A completely new perspective

I've been home now for five days. One of them I slept all day, the next I tried to catch up on important things, then there was Shabbat where I slept a lot, but got to synagogue, happily, easily, on my own two feet. Saturday night I started prepping for my colonoscopy & endoscopy to take place on Sunday afternoon. So, if anyone knows about prepping for a colonoscopy, you'll know that that was a lost night of sleep. Just watching movies and visiting the loo. I was still dealing with jet lag, so it was not a huge loss. The test the next day went off without a hitch, thankfully. They did the biopsies that Mayo requested. The only result I know already is that they didn't see Crohn's disease...which is great. My father (of blessed memory) had Crohn's, so I was genetically predisposed to it. The other things they tested for, like Celiac and a few other things I'll have to wait until the pathology comes back...it could take a while because a lot of holidays are coming up- lots of non-working days.

Oh, I've written a whole paragraph without saying that I am still out of pain!!
It is nothing short of miraculous. I am still in awe just to walk around and not be in constant pain. It's been almost a year of constant, unrelenting, strong abdominal pain, with no relief except lying down. A few well-placed nerve block shots, and I'm a new woman. I know it is just an analgesic, and we haven't gotten to the core of the problem, but I am living kind of in the moment and REALLY enjoying this! I went to the beach today with Shifra, and the huge waves wracked our bodies and threw us all over the place, and it didn't hurt me! I walked up the ramp back to the parking lot-- easily! Last time I was at that beach and walked up that ramp I was with my friend Ken & his kids, and I was in excruciating pain. I am in awe of this miracle. Why didn't anyone in Israel recommend doing nerve block shots? And I now have to investigate how to have them renewed should the time come that they will start being less effective. What I am praying for is something that was explained to me in Mayo that these shots may have the ability to change the pain pathways in my brain/central nervous system and teach them to stop misfiring. Then it wouldn't come back. That would be a miracle on top of a miracle. But at the moment I am trying to think realistically and go about finding a pain doctor who is qualified to do this procedure.

In the meantime, in the not-so-back of my head, I am considering surgery.
Not just exploratory which the doctor in Afula suggested he would be willing to do.

This would be in New York.
I didn't yet write about the surgical consult I had in New York on one of the last days I was there. I was annoyed I never got the surgical consult at Mayo clinic, but I was sent to this reconstructive plastic surgeon at NYU (New York University) by someone I met at Mayo who had surgery with him, also regarding a problem with an abdominal mesh. This guy specializes in reconstruction involving meshes. I saw him, he did a thorough exam, I showed him my CT and MRE, and he put forth a plan of how to fix me. It was astounding. He was saying things nobody else dared to say. He had a logical response to every negative point the surgeons in Israel made as to why not to touch things. I would say "the plastic surgeon in Israel said ABC about that", and this guy came back with a logical plan to deal with that problem, with DEF, so to speak. It was very in-depth. He did the exam with me lying down, and also standing up. I learned a few things... one is that the mesh is not covering my bowel. It is basically exposed with a paper-thin skin graft stopping it from being totally outside my body. No wonder it hurts and lots of bowel irritation is happening. Next he said, after feeling for the boundaries of the mesh itself, "this is a very thick mesh, we don't use these anymore, of course you can feel it". And since only a thin skin graft is covering it, and it is quite probably a collection of inflammation (which wouldn't be seen on the CT) all around it, yeah, that's going to hurt, and radiate all over the abdomen. Also the clips that hold it on can be done away with. This surgeon recommended an organic mesh system that integrates naturally with my own tissue. He would insert that instead. I was hoping he could do a muscle flap with my stomach wall muscle and not use a mesh at all, but he didn't think that was an option with the small amount of stomach wall muscle I have. Lastly he would do away with the skin graft and reattach my healthy skin sides back together. It would be a very long, complicated, intensive surgery. I would have to stay in New York at least a month (where, though??), and he's not sure he'd let me travel after a month, we'd re-evaluate. There must be Kosher rehab places for patients like me...

For now, my task is to get a new MRI. The NY surgeon wrote specifically about how he wants the MRI done, and what he needs. He feels he needs more internal information to make a working plan. So I am going about getting in touch with my gastro doctors now, seeing who will write me the referral for this specific MRI. Hopefully that won't be too hard. Small tasks for now... find a pain doctor to do the next round of shots, secure an MRI for the New York doctor. I don't have to make any decisions today.

Wouldn't it be amazing if I never had to consider that surgery? If the pain just magically stayed away?
It's one heck of a scary surgery. I know too many things that can go wrong... many of them I've already seen with my own eyes- things going wrong in other people, never mind with myself. Many of the women I was staying with at the Mayo clinic Jewish house were victims of botched surgeries that never recovered fully. I've seen too much. It's terrifying.

I have heard also, though, that these steroid shots are not necessarily sustainable. The first time they work great, the second time less effective, and for a lesser time period, and the next time no effect. Everyone is different, and I can take other people's reports with a grain of salt, but I have to be mentally ready for anything.

But taking stock of what went on with the US trip... I have options now I didn't have before. I have tests to do to analyze the problems, I have pain shots that are presently working, and I have a surgeon not afraid to take on my case. These things are more than what I had before I left.

Oh, one more piece of the puzzle is that with the abdominal pain lessened (not completely gone, but livable), I am feeling the pain in my hip(s) more because I can challenge them now. I know both hips are full of osteo arthritis, and are basically bone-on-bone. My orthopedist doesn't want to do a hip replacement in my left side because of the problems related to the skin graft. The hip replacement needs muscle and fascia to heal properly and incorporate tissue to the joint. I don't have skin or fascia there by my hip, and the muscle is damaged. It would be very crippling to not have a hip replacement down the line when I'm going to really need it. If I went through with this surgery in New York, that problem would be solved, I spoke about it with the surgeon, and he said the area would be able to receive a prosthetic and heal well. Another large consideration.

But retracting my large, intense considerations and re-creating my smaller, more manageable world, school starts soon, and we have a BarMitzvah to pull together for Azriel! Got my work cut out for me (as does Azriel!). Then, Rosh Hashana, the holiest part of the year... lots of big feelings and big spiritual considerations coming around the corner.

Last year at Rosh Hashana I was suffering terribly, only able to be in bed. I got to the synagogue once, in the wheelchair. I stayed in bed practically the whole month of high holy days. I could barely move. It was a very depressing time. Please G-d this is shaping up very differently.

I am so, so full of gratitude for this trip I just had and everything that came out of it. And I'm glad to be home...with options. May I never see the depths of that depression I had, ever again. I want to make up for lost time with the kids & Robert now... I want to go places, walk a lot, hike a bit, be IN LIFE! It's been a whole year of sitting on the sidelines.

But one thing at a time. The beach today was awesome. I can shop with Shifra for a dress for Azriel's BarMitzvah. I can take the kids around, I can cook... I can be me. I may even try to play horn again soon... :)

USA trip, part 3: COLORADO

"I went to the doctor, I went to the mountains

I looked to the children, I drank from the fountains

There's more than one answer to these questions

Pointing me in a crooked line

And the less I seek my source for some definitive

The closer I am to fine..."

(Indigo Girls)

I did that... I went to the mountains after I went to the doctors. And you know what? It was exactly what the doctor ordered! I just had five days in the mountains of Brekenridge Colorado, and it was divine. Wanna know what else? I hiked. Up a mountain. Yes I did. And the pain is significantly better. You read that right... it seems that the nerve block shots are taking effect! I started to feel it on Thursday, a week and a day after they did the shots. I realized I was walking around town with my friends, and I wasn't hampered by pain. It was nothing short of miraculous, honestly. What I am left with is a sharp pain right exactly where the mesh is, and where the doctor from Afula (the gastro) said I may have a hernia. But the radiating part of the pain wasn't there anymore. Just that local spot. It had been radiating throughout my whole lower abdomen, and that is what I don't feel anymore. Yay for nerve block shots! Now lets see how long they last.

Some shots of the magnificent mountains in Colorado:

this one was out of a gondola car

 

Also from the gondola

My phone camera could not do any of it justice!

This wonderful group of women I was with in the mountains are women I've known, through email and internet, since I was pregnant with Dov. You see, in looking for a support group for my first pregnancy, I came across this site hosted by Yahoo called "pregnancy today", where you get on an email list with other women who share your due date. Thus was formed the "Oct '98 group". We know each other intimately... I would have known any of them if I passed them in the street, but most of us had never met before. We have been through all life's stages together... subsequent births, deaths, divorces, remarriages, illness...and everything in between. So we decided, about six months ago to do a 20 year meet-up. We voted on this beautiful area of Colarado, and it was wonderful. It was wonderful just spending time with these women who I really love so much, and am so close with. It's hard to describe the feelings we have together. It was truly beautiful (and fun!!). I didn't know if I'd make it. I didn't know what would happen at Mayo, didn't know if I'd have the strength to travel, be social, *do* things, at all. Most of this year I haven't been doing much of anything because of the pain. But I took this risk. And I am so happy I did. Lifetime memories. 

I made some pottery:

went hiking in the mountains (but not as far as others, but that's OK!), and mainly just hung with these lovely ladies and gabbed our heads off! We played some funny games at nights, too. It was awesome. I have such gratitude...for the pain lessening, for the mountains, for this amazing group of women, for my other friends in Denver who we are staying with.

The meet-up after 20 years of "knowing" each other on-line!
There were many women who couldn't join us, unfortunately.
They were truly missed!!

I also met another woman from another of my support group email lists- from my NF list. That was also wonderful. A fellow NF survivor. We also talked and talked, and it felt like we were old friends. We had been in contact with each other for over a year, but meeting in person was the icing on the cake. We went to a beautiful park not so far from Denver, called "Garden of the Gods". It was beautiful, red rock formations. Unfortunately it rained as soon as we pulled into the park, and stopped as soon as we left! But it was gorgeous nonetheless, and the company was priceless.

I'm feeling pretty good. Still having some digestive problems, but overall, the fact that the pain shots have kicked in- the steroid part of them- it is giving me a new lease on life. I now have the task of finding someone in Israel to repeat them when they start to wear off. I think I can do that, shouldn't be too hard.

The whole Mayo experience.... it left me with mixed feelings, but also with optimism. The mixed feelings are because I basically found out that these pain issues I have are probably not "fixable", that I may have to deal with it for the rest of my life. Nerve block shots are sustainable for as long as they are sustainable, but it's like taking any pain killers, it's not fixing the problem. It's temporary, although possibly for years.

I wanted the answer that they can fix me. Or something more definitive about what is wrong. I didn't even get a surgical consult there. Apparently the surgeons who deal with abdominal wall/organ reconstruction were all booked up the week I was there. I kept calling to see if there were cancellations- I called three times a day, and there weren't any. So that was disappointing. I have many questions for a surgeon...mainly what are the chances that it is possible to take out my mesh and clips and reconstruct my abdomen? What are the options? Muscle flap procedure, or stem cell grown muscle, or what else? I still feel like I need that piece of the puzzle. I got a recommendation for a fabulous plastic surgeon in NY. The recommendation was from a woman I met at Mayo, who had a similar problem as mine, and this surgeon reconstructed her whole abdomen without using "props". He specializes in mesh removal and reconstructive surgery. I don't know if I'll get in to a consult with him, the only option for that would be Thursday (in two days) when I'll be in NJ. I am waiting for them to call me back to see if they can fit me in then. I just want a consult...I want to know how to look at this problem. I don't even know if it is a possibility.

Well, as I said many times before, Hashem makes schedules. If I am supposed to get a consult with this doctor, I will. If I am not supposed to be thinking of surgery at all, Hashem won't give me a consult! I just wish...I wish it could be fixed.

In some texts with the doctor of Chinese medicine I was seeing before I came here, he suggested I get myself tested for certain markers for Lyme disease, and other tests for minerals and metals that could be influencing the pain. You see, taking away the pain, while it's awesome, is not getting the problem at the root. That is why I'm so unsettled about how things went at Mayo. And of course I have to do the testing for Crohn's and Celiac when I get back home.

Overall, though, I think because of this Colorado experience, I am doing so much better emotionally & physically. My outlook is positive, my pain is markedly less (but not gone), and I had an amazing time in the beautiful mountains with some very, very special lady friends. Also spending time with my friends in Denver (Azriel's friends & their parents) has been very wonderful. I feel renewed. It's been a LONG time since I felt that. Long overdue.

Tomorrow morning we fly to New Jersey to spend time with my childhood friend Devorah, and my aunt (my father's older sister), and cousins. Then Sunday is the unveiling for my Dad's grave stone (both my brothers will be there, too). Then I leave on the 14th. Kind of leaving on a sad note, but that's OK. It's life. It closes a huge cycle for me, closing my years of having a home base on Long Island. It's strange. The whole time I've been here this trip, I have wanted dozens of times to pick up the phone and call my Dad. I just still can't believe that my parents are both gone. It's been 9 months since my Dad passed away. After I see their graves on Sunday, I honestly wonder when I will ever see them again. Only Hashem knows that. Hard to wrap my head around. My forever bond to Long Island is not physical anymore, it's emotional now. OK, I'm getting sad.

I'm going to close up here, although there is so much more to discuss.

You may not hear from me until after I get home (August 15th), I don't know if I'll have time to write again. But I'll leave you with this:

The other half of the rainbow that started on the
little lake in Minnesota... this one is from Brekenridge
and it's the other half!
(The one in MN started on the right of the world.)

HOPE.

 

Same rainbow in Colorado, but diagonal camera...

Mayo clinic, part 2

I am out of pain.

It's temporary...I can hope for another four hours or so for the local anesthesia to stay with me.
Then, I can hope in another few days, or longest two weeks (!), the longer-term steroidal pain medicine will kick-in and help the pain exactly where the local is working right now- my stomach wall. This is what they call the nerve-block shots. I had two today, one above each hip bone, to work on the stomach wall nerves. It's a diagnostic tool; if it works, we know the problem is in the stomach wall. If it doesn't work, we know the problem is something else, something deeper inside. The fact that the local anesthetic worked is a good sign, but the real test will be to see if the steroid part of the shot will work for me.

(oh, and BTW, the shots were put into me directed by ultrasound. And in the OR, the ultrasound transducer fluid is COLD! I asked why they don't have those special warmers, and they said that the cold doesn't give an environment for bacteria like the warm does, so in a case of an injection, they prefer to use it un-warmed. Interesting!)

It's been quite an emotional roller coaster here...hoping to get appointments for all the consults I need lined up in one week, waiting for openings in the schedule. Yesterday was an entire bust of a day waiting on getting into the gastro doctor earlier, but there were no openings, and we had waited in the Gastro unit all day. Mind you, every unit and waiting room there is like a beautiful hotel lobby, with carpeting, free internet and computers available, big soft easy chairs galore, and even large jigsaw puzzles set up on tables for people to mosey on up to and just do parts. That's cool. We did parts of a few puzzles in different units already.

But it wasn't an entire bust. We met a very interesting Egyptian-American couple and talked to them for quite a long time.
Also I did more blood work that my doctor ordered. I didn't understand what it was for, but later in the day when we got home, and the results were posted on my Mayo patient portal, I checked them out. And guess what? They point to signs of Celiac disease! I can't believe we overlooked doing that test in Israel with all the blood work I had done. I went back in all my blood tests for the past year or so, and nope, we didn't test for that. It's not a definitive diagnosis, though. They recommend I do an intestinal biopsy to decisively diagnose. It turns out that the Mayo radiologists who read my CT & MRE saw signs of possible Celiac disease inflammation or Crohn's disease. The interpretations I got in Israel said nothing of the sort. And apparently my colonoscopy I had done in October wasn't thorough enough, the gastro here said a whole section wasn't examined, and that is where this inflammatory process is seen in my other scans. So, when I get back to Israel I have to redo the colonoscopy & endoscopy (JOY), and send the results to my team at Mayo for them to interpret and diagnose. I could do those tests here, but it is many thousands of dollars, and we are paying out of pocket, and it's free (or nearly free) in Israel.

I have a lot of tests to do back in Israel. A chest CT as well, to rule out reasons for my 2+ year chronic cough.

I see my primary care physician (Italian lady with thick accent) again for a wrap-up tomorrow. Thing is, we may not yet know if the nerve block will be effective until after I've left. I have open-portal communication with all my doctors here, I just write a letter and send it through the portal to whoever I want to speak to, and I hear back within a day or two (usually from the doctor's assistant, in consultation with the doctor). It's an awesome system.

I have to see what else she suggests I should really take care of while I'm here, if anything.
Turns out that as of yet I didn't get a surgical consult. I'd like to have one, to have another opinion about surgery, but apparently not many surgeons do the type of surgery I'm looking at (removing mesh/reconstructive surgery), and there isn't an opening until Mid August when I'll be back home already. I can call as many times as I want during the next few days to see if there is a cancellation, and I can possibly get in, but the chances are slim. That's a bummer, but everything is scheduled in the heavens... G-d is the Master of schedules, not us.

The integrative medicine system here is *amazing*. All the doctors are in close contact daily. Things get done in a timely fashion (usually). For example, I had the pain doctor today, then a pain specialist (not MD) training in coping with chronic pain (extremely informative!), then they did the nerve-block shots immediately thereafter, when it hadn't been previously scheduled. Everyone communicates with everyone. All recommendations from all doctors can be seen by anyone on that patients team. This system should be adopted world-wide, this is what patients need. I will post some pictures from the Mayo history museum at the entry level of the clinic, and you will see a little of what I mean.

They have an incredible three-week pain clinic program here. One gets physical therapy (totally individualized of course), and lots of mental training to basically reclaim your life. The pain specialist today told me in length about it, and gave me an entire shopping bag of reading materials and CD's. I could possibly consider coming back to do that some time. If necessary.

If the nerve-block shots work, I'll need to find someone in Israel to do them every three months or so. The long-term hope is that it can retrain the pain messages in my body to stop making pain. I feel it's not going to be so easy to find someone in Israel to do it (paid by the national insurance) on a timely basis, but I'll cross that bridge when I get to it. It's possible that keeping the pain away artificially can change the "pain loop" in my nervous system. That remains to be seen. We're not even sure if this is going to really work yet.

OK, here are some pictures from the museum, and one special one from today out on Silver Lake here in Rochester MN:

Dr. Plummer was really one of the most important founding members of the original Mayo philosophy,
as well as superb doctor. We believe his name should be part of the Mayo name, but somehow it isn't.

They mortgaged their HOUSE to get this microscope
for the clinic!

Not a great photo, but Lou Gehrig was diagnosed and treated here!
He is the one who's name is on ALS. They have a signed baseball and his
original uniform and glove!

Foundation blocks

This... so NICE.
In Israel, I have many many times had to
roll the big roll of paper at the head of the examination table
so the last patients wrinkles are not going to be under me. I always
thought it was so gross that patients have to do that.
Here, this sign is on every exam bed of whatever room you are invited into.
And there are cotton sheets...not a big roll of gray paper.
(yes, I know it's all about funding...)

This we saw today, from our a little battery-powered boat on Silver Lake, after light rain showers. It was breath-taking.

Hope.

At the Mayo clinic, part 1

The ultrasound fluid at the Mayo clinic is warm. There are warmers with the ultrasound machines, and when the fluid gets squeezed out from the bottle onto your body, it's warm. I asked the technician if the fluid conducts better when it's warmed. She said "no, that is purely for the patients comfort". Yeah, brings one to another realm of patient care.

So I'm here, a state I had never been to before... Minnesota. Rochester, Minnesota, the home of the famous Mayo clinic. Where the best diagnosticians in the world are supposed to be.

I know I haven't written in a long while. I just couldn't. Things were too rough on too many levels, I was in really bad shape. I just couldn't write more about the gloom and doom, so I didn't write at all.

But after a 25-hour day of planes and lay-overs, Robert and I arrived here.

Our feet hit the ground running. We checked in to the place where we are staying (a home organized by this foundation) at around 7:30pm Thursday (after leaving our home in Be'er Sheva 2:30am Wed night/Thursday morning). We ate a little, then went to sleep. My first check-in was for 6:30am Friday morning. Then I met my new internist here... a tall Italian woman with a slight-build, and a very heavy Italian accent. She was thorough and kind. I was a bit disappointed, though, that after all the painstaking work I did to translate all my medical documents from Hebrew to English, and an entire half-day spent trying (and finally succeeding) to upload my imaging studies (CT, MRE) to my Mayo patient files, she knew nothing of me when she entered the room. Hadn't seen anything. What was even worse, was that my CT wasn't even available for her viewing. I had it with me of course, and her staff uploaded it again for her to see, but that took over an hour. I don't understand how, in a place with such accent on efficiency, my doctor met me with no prior viewing of my case. So, I had to start from the beginning. Because of that, and because she was so thorough, it was a 2 hour consult/exam.

Her first thought was to try nerve block shots with me, through the pain clinic here, to see if that can isolate the pain/nerve receptors and block the pain. It is not a long-term solution, but a type of diagnostic tool. So I will set up an appointment for that tomorrow.

I skipped something, though... in my haste to gloss over the difficult passed few weeks, I forgot to say that the day before we left, we finally heard back from the surgeon from the hospital in Afula, who I had seen some weeks back. He called. He said that he had consulted with the surgeon who had put in my mesh/clips, and he had consulted with other radiologists regarding my CT scan. He did major footwork on my behalf. He told me that everyone said to him not to operate on me. But he said that he feels that because my quality of life has been so destroyed by this pain, and I am young, he wants to try to help. He is willing and ready to do a laproscopic surgery on me, to release adhesions, fix the suspected hernia in the mesh, fix whatever abnormalities are happening with the mesh (it may be folded over on itself), and do what he can. He would not do an open surgery, though, he feels that is too risky. Whatever he can do laproscopically he will. OK, so here is someone willing to take a chance on me, to help. I told him I was headed to the Mayo clinic, and he said "Excellent. Call me when you return and let me know what they said and we'll go from there".

So that is on a back burner for now.
I don't WANT surgery. At all. My mesh was put in laproscopically, and that hurt for an entire year thereafter. That was when I started on the Fentanyl. And it may not even help, we have to know that, too, and it may even put me in deeper pain. But I have to do some risk assessment here, I mean yes, I have lost almost all my quality of life. I have to be willing to try to change that somehow. But surgery is scary in my case. But not out of the question. And I haven't yet met with Mayo surgical consults, so the jury is still out on this issue.

So, after my internist consult, it was blood test time. Done quickly and efficiently, and even bandaged the place of the blood draw afterward! In Israel, you walk out of the nurse's station after your blood draw with your hand holding a piece of cotton on the area, and if you take it off too early or don't apply enough pressure, you bleed all over the place. Usually I wind up with huge bruises for weeks thereafter. This time, no marks at all except for where the needle went in! The small things can make a difference.

After the blood test, I was scheduled for two ultrasound exams. One for the arterial function to my abdomen, and one for my kidneys. That's when I leanrned about the warm ultrasound fluid. I don't have results from those tests yet.

Robert was pushing me around in a Mayo wheelchair the whole time. Thank Gd for those, it is a huge place, and every test is in a different locale. We hit the mall there, too, because I was completely freezing from the time I hit ground in Chicago! Yes, Chicago-- we had to change planes there to Rochester. The tiny little plane that took us to Rochester MN had COLD MIST coming up from the sideboards in the floor, and my legs were frozen solid. No blankets on offer on that flight, either. I couldn't warm up all the next day, either...I hadn't thought to bring a sweatshirt or jacket of any sort. It's 100 degrees (or over) every day in Be'er Sheva, it just didn't occur to me that I might be cold in the US. So, we bought me a Mayo Clinic sweatshirt. Cozy.

Then we came back to our rooming house to get ready for Shabbat. We didn't have to do any cooking, though, it is all provided by the organization. That is *so tremendous*, it's phenomenal. Shabbat was with another couple and a single woman also staying here, we ate dinner together. But Shabbat day was a bit lonely; the couple left, the single woman was visiting her friend at the hospital all day, and Robert went to the Chabad shul to pray (too far for me to walk). He didn't get back until after 3pm, so I had a lot of quiet time.

I have not stopped being tired since I got here. I slept almost all day yesterday, as well as night. Jet lag. Today is Tisha B'av, and we'll go to the Chabad later for a program they are having. The rabbi of the Chabad here is from Be'er Sheva, BTW! I knew his father (of blessed memory), and know his mother. That's cool.
I am fasting so far, but I am prepared to break the fast if I feel I am getting sick.

Tests and consults start up again tomorrow morning, and go through the week. I'll try to keep you posted on progress.

I can't believe life has brought me here. It is such a deep, curious trip, this journey called life. I just pray I can get to live it in less (or no?) pain.

And I pray my kids will be OK during this time period we are gone. It's complicated. They know I haven't been well in a long time, the dynamic between all of us has changed. If the mom's not OK, the kids know it and are affected. We are all hoping that better living is on the way. I feel so sorry for the kids sometimes, what they've had to endure through my illnesses. I know that each of our characters is built through our life experiences, but I wanted better life experiences for them. I wanted better life experiences for *me*, for my marriage, for my life. OK, not going there, I'll start crying again. Let's move forward.

We're moving forward. With the help of G-d.

my pilot light is dimming

I don't even know where to start, or what to write.

Honestly.

My laptop died last week, so that is one reason I haven't written recently. It's only one reason, though. I am writing to you from a new laptop... not yet formatted how I need it, but getting there.

[actually as I was writing, the new -refurbished- laptop died too. I'm finishing this blog entry on Robert's desktop, which is uncomfortable because I have to sit in a chair for too long, and because his keyboard is too mushy for me.]

You know what? NOTHING is important to me anymore. Really nothing. Nothing material, anyway.

I barely even want to live. My every day is consumed with pain and sadness, who would want to live?

What is important is friends and family.

Some friends are dropping away. I heard that's to be expected, but it doesn't hurt any less. People
can't deal with this level of problems when the problems are not getting better. I understand them, I don't want to live with it either, but I don't have the choice. Nobody is calling (except HF- thank you so much), I may get a message from my closest friends occasionally. They have no idea how my life has turned into zero; and it's sub-zero without them.

And family, what little of it is left, I hear nothing from anyone. Everyone gets to move on in life. Me? Whatever.

My immediate family is everything to me, but even to them, it's trying. I'm so often in pain, and so often so deeply sad, I'm a mere shell of what I used to be. I went out with Dov (19 years old) the other day to a nearby lake. We had planned it for a week, that we'd spend special time alone together on Sunday. It was great. Except that I was still recovering from an ear infection, and my ear started really hurting me when the wind kicked up at the lake. Then that evening I had a migraine, and couldn't sleep all night.
I'm in such a state that anything throws me off completely.

It was great to spend the time with him, but I need ME. I need to have my body and soul returned to me for proper usage. I am a complete shell of my former self. 'Former' meaning before this intense abdominal pain began last September. More former than that I can no longer want.

Remember when this all started I said I had a feeling it wasn't going to go down without a fight? How did I know? How did I know this was going to be a life-changing situation? I just felt it, deep in my gut, so to speak. I've been through my share of life-changing situations, I knew when this pain started, that it wasn't at all good, and that it wasn't going to go away easily.

A few weeks ago I ran away from home... for a Thursday-Friday-Shabbat alone, at the Dead Sea. I literally ran away, I barely even said goodbye because of the emotional state I was in. I didn't even know where I was going, I just needed to get away.
But you know what? I'm in constant pain. *Nothing* takes that away. I took it with me, obviously. It was a nice Friday at the Dead Sea, but Shabbat was lonely, and I was in lots of pain. Didn't give me any real lasting change.

I have seen a few doctors since I last wrote.

My friend recommended a certain gastro doctor she knew. I don't know what sort of doctor I need, if it's gastro, of surgical, or internist, or infectious disease. But, on a high recommendation (and great desperation), I went to see this gastro doctor she recommended. It was a long drive, about two hours away. Robert drove, thankfully. Again I explained my plight. She listened very attentively, was extremely intelligent, and asked good, targeted questions (and looked me in my eyes, a rarity for doctors). She looked at my CT scan. We left there with her saying she wanted to consult with the head of surgery in a hospital in the north of Israel (Afula) who happens to be her husband. OK, so we waited.

Of course she didn't get back to us after a few days had passed. People in general don't get back to you-- I am so fully aware of that, it is just another point of hardship of life. Robert wrote her a text (she had given us her private cell number), and she wrote back that we should make an appointment with her husband (chief of surgery in the northern hospital). We saw him on Monday (yesterday).

Long story short, he was a lot like his wife... amazing listener, very intelligent and clear, caring. We had an hour and a quarter consult (extremely unusual for private Western doctors) and exam.

Upshot?
Nothing yet. He'll get back to us after he has the chance to consult with the surgeon who put in my mesh & clips, and to look over my (new) CT scan with a radiologist he knows.

He made sure we knew that he understands that it's very complicated, and he may not be able to help me. But that he wants to explore options by doing some consults on my behalf. He may think about an exploratory surgery, but doesn't know yet. He said he thinks the mesh is folded over on itself in my belly.

And as far as I can see now (not very far), I'm still going to the Mayo clinic in July... the 20th, to be exact. Robert is planning to accompany me (new development). They have set up for me a team of diagnosticians- all the sorts of doctors I mentioned above (internist, surgeon, infectious disease doc, gastro). I just don't know where this will lead me.

Bottom line now? Life is so awful, I don't see hope on the horizon. What is life like with no hope? No reason to wake up, nothing can be accomplished during the day, and often a headache by the nighttime from crying. It seems to me that the world gets to keep on going, and it is leaving me behind. But I'm alive, so that's the problem. I'm not only alive, but I'm locked into a not-functional body. I have a tremendous amount to offer the world, and my family, but I'm locked in. I haven't been able to work, or pursue any of the passions I have. What's worse is that it is all dying... the passion... it's all dying. My light is slowly, painfully, going out. All I have from sunup to sundown is harsh abdominal pain. There is no where I can go, nothing I can do. And the depression that has arisen as a result of that makes life impossible entirely.

It's not sustainable.

That, together with family & friends dropping off the radar?
Yeah. You got it. But you probably don't.
It's really impossible to understand my situation unless you live with me.
And even then, I know that nobody can understand.

Bronchitis, Options, and shoe shopping

When I lived in Boston, I used to get bronchitis every winter, and the cough would last for months thereafter. Sometimes I took antibiotics, but it didn't seem to help. It was probably viral.

When I moved here, the frequency lessened (much easier climate!), but I still was prone to bronchitis every now & then. Especially when I was pregnant, I used to get it with each pregnancy.

Now I have it again. And no, I'm not pregnant. Just sick. And sick of being sick.
This particular round of bronchitis has been particularly bad, kind of similar to the one I had two years ago... (here) when I had internal bleeding from the coughing. I have had fevers up & down, too, over the last few days. Really, really unpleasant.

At one point on Shabbat I couldn't rest because of all the coughing, and I was in horrible pain, so I decided to take a cough medicine that Robert bought in the US, an over-the-counter thing. I haven't been taking much at all in the way of Western medicines, I'm nearly off everything (!). My body went into a bit of a shock... I actually hallucinated with this simple over-the-counter cough medicine (Mucinex). Real hallucinations-- like clowns in the back of a big truck, and also being in a library next to a card catalogue wall (remember those?), and actually one amazing thing was that my mother (may her memory be blessed) came to me. Not the sick, bedridden mom that I had in her past 4 years, but when she was maybe about 45... healthy, young, pretty. She came to me (I think I had called out for her literally), and started stroking my curly hair away from my face saying "yes my doll, I'm here, everything is OK". Then I lost it- started really crying. ("mommy!") And I was home alone, Robert & the kids were out at friends for the Shabbat meal. But, even though it played tricks with my mind, it stopped my cough for a while and gave me some desperately needed rest.

I have actually been taking that medicine at night, because it helps me sleep. The hallucinations have stopped. I can't use my medicinal Cannabis when I have such a bad cough, so this cough medicine helps me sleep.

At first I was getting the pain from the "anchor" clip of the mesh in Gapey, and thought that internal bleeding was happening again, but today it seems better, not so purple. I can see the blood pooling behind my skin graft because those clips get so irritated with the cough.

Which brings me to the discussion about the mesh and clips... I'd like to get them out. Well, I shouldn't say "like". But, I think they might be responsible for my abdominal pain and inflammation. I don't know that for sure, but I have reason to believe, that's obvious.

But it's not that simple. They are holding me together. That big piece of mesh is representing half my stomach wall muscle. If it was taken out, there would be nothing there. I have NF to thank for that. (I remember the surgeon from the NF telling me that the bacteria got a "tiny bit" of muscle).
My options for reconstruction are not good ones, either. Option one is with a muscle graft from my own body- either from my back, or a part of my calf muscle. That would leave me with another big wound to heal, along with a major abdominal reconstruction. Not savory. Option 2 is using a cadaver muscle. I don't have enough information about this, but it seems I'd have to be on immunosuppresants for quite some time after surgery, so my body doesn't reject it, and that isn't ideal obviously, either. The idea of a survivor of NF (and a zillion infections since then) going on immunosuppresants is, well, at best, counter-intuitive.

But what *really* are my options? To stay in pain from now until I die? That's such an awful option, I can't list it as an option. To return to treatments with Dr. F when I see that after so much hard work (on both our parts) the pain returned as if nothing had changed as soon as I had to stop treatments? He's returning at the end of the week. I don't know if I will resume treatments or not. It's extremely expensive, and I was hoping for more improvement by this time. I don't know if I should return to him or not. The treatments helped while I was doing them, but there doesn't seem to be much, if any lasting effect. He is quite sure that I haven't had enough treatments to really know for sure. His original estimation of one month of treatments for every year I've been sick, well, that's only been less-than-half fulfilled at this point, so he is telling me I am not giving it a fair go if I leave now.

Other options..... More abdominal surgery? Or stay in pain? Neither, thank you. I just don't know if there are any other viable options. So far no surgeons here will touch me, and the words of my last surgical consult with the top guy in Hadassa Ein Karem hospital in Jerusalem are ringing through my head "not only am I not going to operate on you, but I am telling you do not let anyone else operate on you. You could easily be put in a much worse situation". It all makes me want to curl up and die, honestly. It's easy for him to say that, he's not living with constant abdominal pain.

I am considering getting consultations while I'm in the states. But if someone puts forth viable plans for a doable reconstruction (big *if*), it's a complicated decision. There are the obvious reasons which I stated above, but also time constraints. I'll be in the states in August, and will be doing some consults in mid-August. But, Azriel's BarMitzvah is at the beginning of September, so I couldn't do any surgery until after we came back to Israel for his BarMitzvah, and then return to the states again after all the Jewish holidays in September/October? And doing surgery in America, who will be with me? Who will take care of my kids? We're talking a minimum of 6 weeks before I could travel after a procedure like we are talking about. I remember 6 weeks after the surgery to install the hardware-- I was in horrific pain, nowhere near transportable. (THIS blog post is from 5 weeks after that surgery...) It makes my head spin.

Then I think, I should go back to Dr. F (I have a tentative appointment this Friday), and put all my eggs in one basket (as if I have any eggs, or baskets, for that matter) and pay huge amounts of money for an unknown result. I've been doing that already.

As I said, it all makes me want to curl up and just not wake up one day.

But I am not dying, I do wake up every morning, whether I want to or not.

I do what I can for and with my kids, but that is less and less as time goes on. I haven't cooked a meal in G-d knows how long. [but after I wrote that sentence I decided I'd cook dinner last night. I did, and the kids loved it. But I was in such a foul mood, life is just too damn hard.] I took Dov shopping yesterday, it was a rare opportunity to spend time with him; he is so rarely home. What a special, amazing person that boy is. He hadn't been home for a month when he returned this Shabbat. He needed shoes, so me & my bronchitis and fever took a bunch of Tylenol's and went out shoe shopping with him. Then today I took Azriel shoe shopping (they needed different stores, I couldn't do them both at the same time.), after taking more Tylenol's. And I'll try to make some sort of dinner. Because I *am* alive, and Hashem still thinks I'm worthy of mothering these children He has entrusted me with. But if it weren't for them...?

I don't know how any of this is going to get resolved. I do plan on keeping writing though, so we'll figure it out. Or not.

How low does one have to go before he gets to see the promise of hope?

Everyone tells me it's unacceptable, not allowed in the least to give up hope.
I guess they don't know what this feels like.

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.

A diagnosis to beat all diagnoses

Many weeks ago I put my medical case up on an internet website that hires medical detectives to figure out hard-to-solve cases. The site is called "CrowdMed". It costs money, they actually pay the medical detectives, and award those who have actually solved the case. I figured I had not a lot to loose, since going to the Mayo clinic would be much more expensive, I thought this could be a way to possibly get answers/a diagnosis without going there.

Shortly after putting up my case, I met Dr. Frischman, and started treatments with him. At first he helped so tremendously that I decided to take down my case from CrowdMed to save the money- the first week is a free trial period. I am very concerned about how much it is costing us to find a working diagnosis and treatment plan.

My first treatment with Dr. Frischman was so amazing, I was practically out of pain. But then the pain slipped back in a few days later. The treatments I've had since then didn't show the same results, and I am in very regular pain again, with hardly any change. In the meantime, the CrowdMed people didn't actually take down my case as I had asked. So also in the meantime, a medical detective offered up a diagnosis. And you know what? I think it's *right*. How crazy is that?

I had never heard of it. It's called Splanchnoptosis. Yeah, read that slowly... the last "p" is silent... pronounced "splank-no-tosis".

I had to look it up, obviously. Check out THIS website. I think that is what is happening in my belly- that because of the weakened stomach wall muscle- and half of it gone to NF, and a mesh & clips holding it together- the organs, together, in my abdomen went south. It is relieved when I lie down because they can go back into place. It is hard to see sometimes on a CT scan because if all the organs fall together, it looks normal still. It is also temporarily relieved by a strong elastic hernia belt, even though I don't have a hernia, because the elastic can place the organs higher, temporarily. I find myself very uncomfortable in a few hours, though, and even nauseous after wearing it, because I don't have a hernia, and the pressing on my organs isn't a viable long-term solution.

If you go to that website I suggested (here), you will see the thing that clinched it for me...
One of the symptoms is the existence of a "mass" in the abdomen, which changes places. I have that, but I didn't write it on my CrowdMed case because I didn't know of it at the time. The medical detective guessed the diagnosis even without that information. That was really eye-opening for me. Makes me really think that is the diagnosis we've been looking for. Now the question is... what to do about it. Most of the internet sites say surgery is the treatment. And I may need surgery. But for me, it's very high risk, to do a multi-organ surgery, when I have a huge mesh & clips in my stomach wall, and lots of adhesions (the danger is profuse bleeding). But living the way I am living, with almost constant pain and very sedentary is not a long term solution, by far. I have lost much of my freedom since September. I can barely do anything. So would I go for surgery? Yes, I think I would. I need to take the chance that I could get my life back. BUT, and this is a big BUT, I am going to have more treatments with Dr. Frischman, and see it through, because he completely believes that we can take care of this disorder with manual treatments, dietary changes and Chinese medicines. I am completely committed to seeing that through, but until when? He is intimately familiar with Splanchnoptosis; a family member of his had it (but wasn't treated for it, she passed away, but not from this disorder).

Will I go to the Mayo clinic? To have the diagnosis verified? To do more testing and see if there is a different diagnosis in there? Or possibly more than one disorder going on? My feeling is.... maybe yes. (I am very concerned about finances, though). I have to see how these next three weeks go. But I think it'll take longer than that with Dr. Frischman's treatments to know if they are working. I think I just need to chill out a bit and see how things go with the treatments and Chinese medicines. I have to pray that answers will come to me at the right times.

I am starting to feel less confused, though, with this medical detective's diagnosis.
What do you guys think? I really value your feedback! It's best if you can leave it on the blog itself instead of Facebook, that way I can keep track of the comments better. Thanks.

The second treatment, and March second

Lots of people have been asking me for details about Dr. Frischman, the Chinese & Jewish medicine practitioner I have been seeing for a few weeks. I can link to his blog, and to a general website he put together, which can be found HERE, or HERE. If you would like phone numbers, you'll have to write me a private email, I'll be happy if I can hep.

This week's treatment went way deeper than the first one. Wow, it honestly hurt so much, I was crying and yelling out. That doesn't mean it was bad in some way, just harder for me. It was two hours. And at the end we changed my medicines to another set... one of them is for pain. I wasn't magically out of pain afterward... contrary, actually, I hurt a lot on my drive home from Jerusalem. The days that followed were definitely higher pain levels than the previous week, but less than what we started out with. I have been sleeping with a heating pad at night, on my belly, and sides, where he is breaking up the adhesions manually. This is not sissy work... not on his part and not on my part. He works very strong and hard to get into the middle of the problems in my belly, and break up adhesions, and melt that ball/cyst that is there. Not just my belly, ribcage as well, and back- lungs. My entire abdomen is stuck with adhesions, and causing me horrific pain. None of this is easy. But, he fully believes that once we do it, break up all the adhesions, they will not come back. As opposed to surgically separating organs for where they are adhesed to, the adhesions will return shortly thereafter, because that is the nature of surgery.

I received in the mail finally the surgery report from my mesh surgery. I have been curious to see which mesh was used... there are many litigations going on about surgical meshes. People are aways sending me things about them, so I wanted to see which type was used in my abdomen. Turns out that the one which was used is a very high quality mesh with no litigations, thank G-d. But, there are many, many reports on the internet about the tremendously high rate of surgical adhesions with this mesh. And the one I have is HUGE, covering part of the pelvic floor and my stomach wall. No wonder I'm riddled with adhesions.

But adhesions can exist for many years without ever bothering the person. But one day comes, as the many reports on the internet attest to, that pain starts to take over. And it is very debilitating pain. It can be triggered by an infection, which in my case, I believe that is what triggered it. That infection I had on my skin graft last spring/summer which was an open wound which was constantly weeping wound fluid, it lasted four months, defied all antibiotics. It was swabbed as a Staph infection, but antibiotic resistant. In the end I was able to get it to close up by putting Manuka Honey on it. It was *amazing*. Two weeks of twice daily application and bandaging it up, and it closed up. But shortly thereafter, like a week later, this belly pain started. It was triggered by the Staph infection, and seems as though there is still some infection inside, "protected" by a cyst, in my gut. Dr. F can feel that cyst. He said this week it felt a bit smaller to him. To me it feels like a wall- a blockade of sorts- not letting good blood flow happen.

In fact, this cyst is probably very similar, if not the same thing, as was the lipoma which was extracted from my left thigh during my initial small hernia repair, the days before NF. The surgeon himself at the time told me it was "lymph nodes with old infection, surrounded by fatty tissue, enclosing them off from the body". But the surgeon took it out, in pieces, not knowing exactly what he was dealing with, and may have inadvertently released that infection into my blood stream to land me with Necrotizing Fasciitis. In the surgeon's own hand writing, as I saw on the initial surgery report, he wrote about the lipoma "Nemic?" (necrotic?), with that question mark. Yet, he sent me home a few hours later with no antibiotics as protection, and no instructions as to what to do or not to do. He said "if it hurts, don't do it".

So this cyst-like thing in my belly right now may in fact be the same sort of thing. But we are not going to do surgery on it and break it, releasing the toxins (infection) it is trying to protect me from. The idea is that it will melt away with these hand manipulations, and just be excreted like waste product. Same with the scar tissue which formed adhesions... it should melt away. I hope and pray we are on the right path here.

I am still worried. I still have that niggling thing in my soul thinking there may be some malignant process going on that is not being treated. I am still worried that the pain I have is something else entirely. It's going to take me a few more treatments to hopefully be able to put those worries to rest. Dr. F is so completely committed to helping me, I am entirely humbled. I trust him completely. I pray that with more treatments I will slowly be returning to myself.
We still have my knee to work on (swollen, hot, and hurts constantly -has a disease called cohndromalacia), and my migraines to heal. Everything in it's own time.

Yesterday was Purim, and it was a great, and very busy day. I think I overdid it, I wound up with a SCREAMING migraine at night. I don't yet have my renewed Cannabis licence (although it's in the works), and that is the only thing that can help take the migraine away. So, I made some key phone calls to people I thought might have some, and found a dear person who shared hers with me. I sent Robert over to her at 10PM, and I was all better by 11:15. Thank G-d. Today I have slight remnants from the migraine, and am laying low.

It's a work in progress.
At some point I have to get to the emotional place so I can perhaps cancel my Mayo clinic date (April 9th). I haven't done that yet, because I'm just not there yet. I don't have complete 100% faith that what we are doing, Dr. Frischman & I, is actually the answer and I will be out of pain. I've been working hard on making important dietary changes as well. I'm taking vitamin supplements, Chinese medicines, and fiber drink to even out things in my digestive tract. My homeopaths decided to take out the Homeopathy for this treatment with Dr. F, they want to "clear the field" for these other things to work.

I think I'll get there- I mean get to the place of knowing that I don't need the Mayo clinic to diagnose me, that these treatments with Dr. F will be exactly what I need. I know G-d brings us to the right people at the right times. I just need a little more time to believe it in my deepest innermost soul.

It's almost Shabbat on this very auspicious day of March 2nd... not only my handsome nephew Adam's 22nd birthday, but also it would have been my parent's 60th wedding anniversary. They got married March 2nd, 1958. I hope they are celebrating together up there around the atmosphere somewhere.... enjoying looking upon their beautiful progeny; the fruits of that marriage. I miss you mom & dad.

Happy anniversary, you two.

And to all, a Shabbat Shalom from the Holy land.