Sunday, March 18, 2018

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.

Saturday, March 10, 2018

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.

Friday, March 2, 2018

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.

Friday, February 23, 2018

A revealed miracle

Wow. Just when things seemed their darkest. Last week I wrote about beginning to lose hope.

Rabbi Nachman from Breslov says one must go down to be able to go up...

The light is cautiously glowing at the end of the tunnel... glowing a promising but cautious sunny light.

I saw a doctor of Chinese medicine yesterday in Jerusalem. He's not an MD, but learned many years as a Chinese medicine doctor. I heard of his talents through a friend who has a very sick child... this friend is someone I helped deliver one of her babies many years ago.

His medicine is also in line with Torah scholars' teachings. I went on-line and listened to his classes, learned his methods of diagnosing problems, and decided, with my friend's encouraging, to make an appointment with him to see if he can see anything that all the doctors until now were missing. I told myself this is the last "alternative" practitioner I'm going to see. If it doesn't work out, I'm going to the Mayo clinic.

I sent ahead of our meeting my medical documentation since September, since this pain crisis began. I also wrote a sort of CV of my medical history, and sent that to him.I figured this would save time at our first appointment. The initial consult is scheduled for three hours.

Mine went for five. Five hours. It was so intense.

A large part of his diagnostics is with taking pulses. Each wrist corresponds with different organs in the body. Three types of pulses are taken from each wrist- superficial, then deeper with more pressure, then the deepest pulses. He recorded what he found for each organ. Interestingly enough, my liver was completely depleted- empty, he felt no pulse for it. He used words for his diagnostics like "slippery", "thready", "rapid", "slow getting slower". It's fascinating, really.

Half of that was intake interview, the other half an intensive treatment, followed by deciding which Chinese medicines would be good for my situation.

This doctor is also a chassidic religious man, interestingly enough. Quite a bit older than Dr. S.

It was just completely different, unbelievable. He started off with some of the ideas that Dr. S had; to break up the adhesions manually. But this doctor, he did it quite differently. Dr. S had the right idea, but he wasn't assertive enough with the adhesions. This doctor- Dr. F, really investigated and pressed quite deeply all around gapey and my whole abdomen with the heel of his hand. At one critical point, he felt a definite "ball" inside me. When he pressed on that, in a circular motion, I practically went through the roof. I was lying down, I don't have pain when I lie down, right? But he FOUND IT! When he pressed on it so deeply, and I yelped out in pain, I said "that's IT. That is exactly the pain I've been feeling!"

No doctor until now has been able to palpate me to elicit the pain. Nobody found it.

Dr. F found it.

It immediately brought me to tears right there, spilling down the sides of my temples, as he worked it. We spoke to the ball. I called it "fist", because it feels like a fist punching or impaling me.
It seems that it is an enclosed cyst of some sort, enclosing what is probably old infection. Most likely left over from the infection I had on my skin graft last spring/summer. Because it enclosed itself in a cyst, my blood tests look normal. Dr. F worked it and worked it, giving me breaks as well. He worked on a LOT of adhesions. Every time he felt one, he aggressively massaged it loose. This was hard work for both of us. I had to concentrate really hard on breathing and letting go, going to my "happy place" in my mind, anything to work through what is essentially external, bloodless, surgery with no anesthesia. He worked on my whole lymphatic system, also, such that my body actually let go of so much lymphatic fluid, I had to use the bathroom there 4 times in the 5 hours I was there. I have been retaining a lot of fluid. I've been gaining weight and couldn't figure out why. This is why. My whole lymphatic system was retaining fluid, and my whole abdomen is inflamed, retaining fluid.

It was such a powerful treatment. So. So. Powerful.

After the treatment, Dr. F needed to find out which Chinese medicines he should give me, and he did this by muscle testing. I'd hold the medicine in my left hand, and extend my right hand (holding a hand weight) out to the side and in the air, and he could tell which medicine made my muscles weak and which was strong. That was how he figured out which medicines to give me, and at what dosages. It is quite amazing.

He also is doing an interesting treatment on gapey... on the side where the infection was. There isn't visible infection there any more, but it is still sore on that side. It always is. He put a Chinese antibiotic thick cream in the pocket of the skin graft where the infection festered for so long, then covered it all with a clay-like poultice. When the clay dried on me, Dr. F's wife expertly bandaged it so it would stay in place. I have to repeat that cream/clay/bandage today after I shower. He gave me some of the poultice, and I bought the Chinese antibiotic cream.

Upshot? I went to sleep with such a HIGH, emotionally and physically. What exactly is in those herbs, anyway? ;)
This morning I woke with a headache, but a dull one. But my belly pain is MARKEDLY LESS. It is amazing, I honestly feel like something shifted, and today I have been in much less pain. It's not gone, we have more work to do, but I am quite convinced that I am going in the right direction with this doctor!!! I am seeing him again on Tuesday. We'll do this once a week for a while.

I'm downing all these Chinese medicines at the appointed times, and keeping up with my vitamins and supplements also. I showed Dr. F the list of what I am taking. He approved. He also said I could keep up with the homeopathy, but my homeopaths decided I should stop that for this time period that I am taking the Chinese medicines.

At this rate, I will hopefully be canceling the Mayo clinic dates!!!!!!!!!!

I have HOPE! I'm optimistic! I think we are on the right path, praise the Good Lord!
I know these treatments hurt, it has to be that way. It's better than surgery which could come with so many other dangers, and maybe could break up adhesions and remove inflamed tissue, but surgically, it will just grow back in a short period of time.

Why doesn't Western medicine give Chinese medicine any credit? It is really, really remarkable for the body! Dr. F asked me in the beginning of our meeting "You are obviously very intelligent, you're an orchestra musician, and obviously natural medicinal methods appeal to you, being a doula, so how is it that you got so caught up in Western medicine?" I had a simple answer: "I had Necrotizing Fasciitis". From that, I got on the gerbil wheel of surgeries and complications. Then I had PVNS, more surgeries. Such strong pain at times, I needed opiates. It's a vicious cycle once you get onto it."

I am truly blessed that this doctor and I found each other at this juncture of my life. I really really feel I can get off that gerbil wheel, and HEAL. HEAL. Just that word feels foreign to me to write about. I don't write a lot about healing, there hasn't been a lot of healing in my life these passed ten years. There have been many attempts, though, for sure.

I want to stay guarded and cautious, but this optimism is G-d given. I think this is it. The real thing. Proof in the pudding, I'm in less pain today. In fact today is the least amount of pain I've had since this whole crisis started in September.

I'm incorporating many dietary changes, too (at Dr. F's recommendations). That is not easy, but slowly slowly I'm getting it. His wife is very helpful in that department. I can be in contact with them any time I need. Such a blessing! Maybe I'll even lose the weight I haven't been able to loose for a year.

Oh, and my cellulitis hand is healed, thank G-d, it responded to the antibiotics.
We still have to work on my headache issues... but in the meantime, my neurologist renewed my medicinal cannabis licence. That helps.

Anyone who is interested in more information on Dr. F, go to his blog here. It's not been updated, but it gives an idea of who he is and how he works and thinks.

Saturday, February 17, 2018

Hopeless comes to mind...

It's been an incredibly hard, busy, sick week.

Sunday I had acupuncture. It was for pain relief and strengthening the tissues around my skin grafts and scars. It was fine, except the needle she put in my right hand hurt a lot, and when it came time to take it out, it continued to hurt, and I could barely use my hand the rest of that day or the next day. By Tuesday, a big red spot showed up spreading around my hand.... warning sign. I know that warning sign very well, I've had cellulitis many times. I went to the doctor, and the doctor sent me to the ER. I waited an extraordinary amount of time (like usual), and finally got an IV of antibiotics flowing. After that one dose, they sent me home with oral antibiotics for the rest of the week. They tried to tell me I don't have cellulitis... simply because my white blood cell count wasn't high. Well, my white cell count wasn't high either when I had NF. I had an expanding red patch on my hand where a needle had been inserted a few days earlier, it was hot to the touch, and hurt like h*ll, all the way to my wrist. I'd call that cellulitis.

the needle went in at that spot between the thumb and the first finger...
where it's red here, three days after the fact.
IRONY: for those of you who can't read Hebrew-
This is my number I held while waiting to be called into the doctor.
At the bottom of the paper it says "acupuncture is very effective
for pain treatment! The introductory meeting is only 70- shekels, blahblahblah...
And there I was in abdominal pain, and hand pain, with a new case of cellulitis from
the acupuncture. Oh, the irony.

I got home at 3:30 am from that.

Then the next day I drove into Tel Aviv to pick up my brother at the airport, then take him to his apartment (in Te Aviv). We met with another friend there, but it became clear that I was an impediment because I couldn't walk much, and they were looking for a place to eat. So, I took a bus back to my car on a Tel Aviv street, and drove myself home. That was Wednesday.

My brother told me about how things were at my late parent's house for the month. He & my other brother worked very hard cleaning it out. VERY hard. It is now echo-empty. Not a carpet on a floor, or a picture on a wall. His last parting action was to take the mezuzzah off the door as he left for the last time. Now it's up to the real-estate broker to sell it. It really left a deep impression on me... that house being completely empty. I grew up in that house from the age of four. It's a big deal. My home-base in the US is gone. I know that my memories can't be taken away, but this is a huge step in grief. I'm sad that the house, holding bad memories as well as the good ones, is gone. It's not sold yet, but it's gone. Another family will be raising their children there, going to the schools I went to. It's the way of life. And another nail in the coffin for my soul to deal with.

Thursday brought me to Jerusalem to a surgical consult about my abdominal pain problem. This was an indirect recommendation from Rabbi Fisher... he had recommended the head of the department to me, but it turns out I learned from the secretary that this particular doctor no longer sees hernia patients. So, he recommended me to go to one who specializes in hernias.

That is the one that got me totally depressed.
He basically said he wouldn't touch me with a 10-foot pole. I have no stomach wall at all (destroyed by the NF), and the mesh that is in there is holding well, he said. He looked at the CT scan, examined me standing up and lying down, and said everything is fine. No surgical intervention recommended, no explanation for the pain I'm in.

I know he's not the end-all-and-be-all of opinions in the world. But that visit broke me in a way that I hadn't broken before. It was his "sucks to be you" attitude that I left with that made me so depressed. I cried to my friend Hadassa on the phone... then she popped in to the hospital where I was for a hug and a chat. (Thanks, Hadassa!)

All Thursday I had a headache.

Friday I had a headache, and stayed in bed just about all day.
Friday night I sobbed my eyes out, just feeling so hopeless.

I don't know if I'll go to the Mayo clinic or not... they accepted my case, and I have a date. But I have no hope. I have no reason to believe that they will see things in a way others aren't. It's a lot of money for me to spend, and I am not sure there is any hope for help there. I don't know if a surgery to break up adhesions would help, any surgery could make things worse of course.

Maybe I need to try to get in touch with a doctor for my case there, see what they are thinking in general. It is a hard decision to fly all that way (very difficult for me) thinking that I may just be told there is nothing they can do for me.

I don't know if something is wrong with my digestive tract; I'm certainly taking a ton of vitamins and supplements these days. Something is CLEARLY wrong, though, somewhere in my abdomen.

I feel that I am going to spend the rest of my life in this half-life way, in pain, with no hope of anything changing. I can't even write how awful I feel, It's beyond my words. I can't even imagine getting my life back. I can no longer imagine myself being back in my life as it was-- even just seven months ago.

What is happening to me? I am disintegrating before my very eyes, and I don't know how to reverse it. I am a non-person, just existing. I am in such a deep depression, I can't express it.

On top of this all, the MRI results from my thigh joint and knee joint was not great. All that pain I have when I go up and down stairs is from a new disease I have in my knee-- basically together with arthritis-- bone-on-bone-- it's just too depressing to deal with. I'm supposed to see an orthopedist also and deal with that, too? I can't. My abdomen hurts too much.

I just turned 50. Yay me.
I feel like I am at 50 what my mother was as 80... in bed and dying.

These could be some amazing years. How am I going to turn this around? How is the pain ever going to go away? This is very serious. I am at the bottom of the ditch.

Next week also holds a lot of traveling. The pinnacle of which is on Thursday when I meet a new healer in Jerusalem, but I am guarded in having my hopes up. I feel I can't have any hope for anything anymore.
It's a bad situation, guys.