Tuesday, November 7, 2017

Surgeon: "what? Are you crazy?"

Like I said in my last blog, this one isn't going down without a fight. And it's going to choose when.

The meeting with the surgeon yesterday left me bawling in the hallway afterward.
He examined me, he examined the CT scan films closely, and declared confidently that everything is in it's rightful place, exactly where he put it 8 years ago. The mesh is fine, all the pins/clips are holding up fine. "So where is all this pain coming from?!" He couldn't answer that question. He suggested I turn to a pain clinic for help. I asked if we could do an exploratory surgery, I am sure something is going on and maybe it can only be seen from the inside. He then said "?מה, השתגעת" ("what, are you crazy?"). I said, yes, I am going crazy from this pain, I am about to jump out a window. I am completely unable to live my normal life, I can't be on my feet for more than five minutes without being in searing pain, so yes, I am a little crazy at this point with you telling me there is nothing wrong. He said he would never do a surgery without good reason, and especially on me, with my history of infection. He's right. Of course he's right. But Oh My G-d, that is NOT what I wanted to hear. Walking out of his office with no plan was not one of my plans.

So I got to a bench in the hallway of this very posh office building and cried while Robert curled his arms around me, soothed my heaving, sobbing shoulders. No words could be said.

The office tower was part of an upscale mall in Ramat Aviv (a part of Tel Aviv). The kind of mall where every store you pass you say "really? People buy that stuff?", and everything is 10 times overpriced. (I felt so Bourgeois.)

Robert was sure I'd just want to go home. I never have much of an appetite these days anyway, and I was so depressed. But surprisingly I said I wanted to stop for lunch at McDonald's. Now know this- Never in my life, not the 23 years I've been in Israel with Kosher McDonald's around, have I ever desired that food. I've been the one who will go if the family wants, but not get anything. I never wanted it. NEVER. And now? With my digestion issues and pain and everything going on? I don't understand it at all, but I wanted McDonald's. There were some beautiful coffee shops around, but I told Robert I wanted old Micky D's. There was one in that mall. I had no idea why I would want that, I haven't even been eating red meat for months. But we now know why.

As we were ordering from the new-fangled order machines, there was a very pregnant woman and her young daughter, also speaking English, ordering at the machine standing next to us. We were trying to navigate this system which was all new to us, and the woman next to us was saying it's totally different than in America, too. So we started up conversation! We got our orders, and decided to sit together, we were enjoying each other.

Turns out she just moved to Israel with her family recently, a few months ago, and was brought up in Locust Valley, just a few miles away from where I was brought up on Long Island. But that was just the beginning of our connecting.

There is magic in Israel. I often forget that. I used to feel it a lot, like all the time, when I first started living here. It's a "newby" feeling, the magic. It wears off, we get used to it. It happens all the time; meeting people who become highly significant in your life, connections to other people who are highly significant. Marriages and babies happen this way, and lives get saved regularly this way. It's a way of life here, you see it all the time. This land is a magical place, the Hand of G-d is almost palpable when you live here, you can almost feel it on your back as you move. But after so many years of living here, sometimes we stop feeling it, or stop noticing it. So yesterday, at this table in the swanky mall, at McDonalds, with this woman and her daughter and Robert and the melange of Kosher but questionably nutritious food scattered about? The hand of G-d was there, too. I'm quite sure of it.

There is a long, involved story here, and I may need to cut it into two blogs, but I'll try not to lose you in the explanation. It's all about when one door closes, another opens. I'm going to call my new friend from McDonald's "R". Oh, and she's pregnant with twins, and apparently that's quite a miracle because every obgyn in the continental United States told her there is no chance of her ever getting pregnant again. The daughter she has (who was with us yesterday, she's 6) was pure luck, count her blessings, and cut your losses. She had a uterine disease called Adenomyosis. This was responsible for her fertility problems, and nobody could help her.

Nobody until she got to this certain Obgyn here in Israel named Mashiach. (that really is his name). She asked if I had heard of him (knowing I was a doula, she thought maybe I'd heard of him). Yes, I knew of him, but not from my doula world, but rather from my personal medical world. He had preformed a surgery on me during my hernia mesh surgery 8 years ago, the one we just were checking about just a half hour before that conversation. During that surgery I needed a gynecological procedure done, and my surgeon recommended to hire this Dr. Mashiach, so I did, and he came in to do his part for like 20 minutes, and that was that. I wasn't ever really a patient of his, never did any follow-up with him at all for that. But when I told R about my pain now, and what I am experiencing, also regarding my menstrual cycles, and the large fibroid tumor that was also found on the recent CT scan, and my history including a c-section, she said emphatically "go see Dr. Mashiach. He's the one who knows about this disease." He's the one who got her to the point of this pregnancy she is holding, that nobody else could help her body accomplish.

For a while now it has been kind of an assumption that I have another uterine disease called Endometriosis. It's similar but different to the other one, Adenomyosis. This new friend, R, said she used to have constant abdominal pain like mine, that changed with position, like mine does. This is a positive lead for me. So I called Dr. Mashiach, and of course he has no openings in his schedule for another month. The secretary said she'd call if something earlier came up. I don't know if Rav Fisher can help us with this particular doctor, we'll call him to find out.

That's one avenue that needs to be explored.

The other avenue is my migraine medicine. Topomax. It's a scary avenue because it means my migraines will come back. There is a rare but well documented side-effect of this medicine that is can cause abdominal pain. How strong and what sort isn't documented, but I have to see if going off the Topomax will take away the pain. I don't want to go off it, I LIKE not having migraines. I usually get them at the frequency of one or two a week. It will be more with withdrawal of the medicine, and there isn't much I can take to get rid of the headaches. I am perhaps inordinately scared to go off it at this point. I feel I am maxed out on pain, and adding migraines to it might just make me go insane. I am not sure I can handle it. Of course, ideally, if the Topomax is causing the abdominal pain, it will magically go away when I go off, and we will all live happily ever after. 
(Yeah and then monkeys will fly out...........)

I have done many, MANY medicine withdrawals. Most of them in uncontrolled environments, at home, but under doctor supervision. The most famous was the Fentanyl, of course. I was a mess for 10 months, but I did it. More like a year actually. I now doubt my inner and outer strength to endure this withdrawal. I just don't know if I can handle it. I have already endured more than two months of HARD pain in my body, I am not starting out on a good foot. Now to willingly add migraines? Shit.

Part of me just wants to go to the Mayo clinic in Minnesota and check in for a complete evaluation, and not leave until I have answers. But as Robert said, we have to take care of the "low lying fruit" first- that being the Topomax, and I guess trying to get into the gynecologist earlier. GOD GIVE ME STRENGTH.
I'm losing more and more, emotionally as well as physically, as the days- and the pain- go on.

Sarah Rachel bat Tova

Friday, October 27, 2017

Update: More Complications

This is one of the lowest times in my medical history. Two months now... Two months of pain with no improvement, and it seems to be getting worse. I can barely stand for any length of time without tremendous general pain in my abdomen.

I'll cut to the updates:

The gastro doctor who said he'd take on my case- Professor Fich:

He did get back to me, thankfully. He said he looked over my CT (CAT scan), and said that he feels the original evaluation of ulcerative duodenitis is correct. Together with that, HOWEVER, he feels he sees something amiss regarding my stomach wall surgeries. He couldn't be specific, he feels it's the job of a surgeon to evaluate. He saw something not right with the mesh/clips/pins holding things together in my belly where the NF left it's big hole. Where we all call "Gapey".

One of the problems with that is that he never saw my belly before, so he doesn't know what it normally looks like. In a responding email, we asked him if he would be willing to compare this present CT with an earlier one, because he has access to all the CT's in Soroka. He declined to spend more time on it, saying I should go see a surgeon. OK.

I feel that could totally be right, even without him doing a comparison study.
This summer, while dealing with the staph infection from hell (the one that lasted what... 6 months? on my skin graft? --it's gone now- that's another story- I used honey on it!), I felt that the whole mesh inside me was inflamed. I felt all those clips, I felt the entire mesh. It was bugging me all summer. (can you imagine feeling a hernia mesh inside you?) I remember telling Robert that I wish I could have it removed. One of the clips was actually protruding a bit, I thought it was going to make it's way out of the skin graft itself. I kept a bandaid on it, it calmed down. But I wouldn't be surprised if there is some sort of grand inflammation, or adhesions or all of the above, or some option I don't yet know about, is happening in there. I feel a lot of pressure there. What I know is that the pain is mechanical in nature. What I mean is, when I lie down, it goes away. When I start to sit up, it starts to hurt. When I stand up it hurts the most. The more I stand up, the more it hurts. To the point of, if I stand up for 10 minutes or more I am out-of-my-mind with pain. I did that the other day. I decided that I was going to do one task from start to finish. I was going to put up a pot of soup. It's one of the only things I can eat- vegetable soup. I took out the vegetables, washed them, started peeling, chopping, putting in pot, simmering, etc. By the time I sat down, I was in SO MUCH PAIN I COULDN'T EVEN TALK. My daughter was getting an Arabic lesson, and her teacher was at the table. I sat down at the table, their lesson was over. I could not talk. The teacher looked at me, a frightened look in his eye, perhaps matching the look he saw in my eye. He said "breathe"....

On the phone last night with Dorit my Homeopath, she (also a physiotherapist herself) asked me about other positions, testing out the adhesions theory. She suggested hands-and-knees. I did that in bed, and BAM- within about half a minute, I could barely breathe again because of the pain. Yup, her theory was proven. We're not exactly sure what the theory means, but there is some sort of adhesions, or blood vessels that are getting smushed and not letting blood flow properly in certain positions.

It may have all started with that stubborn staph infection on the graft. I knew it was going inside, I felt it. It was only visible from the outside, but it kept oozing, for months. That means it's coming from the inside. I kept trying to tell my doctor, then the ER. They didn't even swab it. Not until it was really far along. When will they LISTEN to me?

So, now I need a surgical consult.
The only surgeon who I would let touch me near that mesh is the one who put the mesh in, eight years ago, Dr. Amir Szold in Tel Aviv. He is a very talented laproscopic surgeon who's name came to us, of course, by Rav Benjamin Fisher at the time. Dr. Szold, however, doesn't have an opening in his schedule until the beginning of December. Weh-weh. Robert called Rav Fisher back. Explained the whole story. Rav Fisher told him that Dr. Szold is away for this week (how does he know these things?), but that Robert should try to call Rav Fisher next Wed or Thursday, and he will try to get us an urgent appointment. Let's hope that works out. In the meantime I'm going to try to get an MRI so we have that for better analysis of the situation. That should keep me busy, just trying to get that.

Emotionally I'm a mess, but that's to be expected. I'm crying every day from sheer frustration. I've really lost so much. Remember when I was just one or two months after NF and I was doing 20 hour births with women? OK, I know that was also extreme, and not always in my best interest, but there was something badass about that, right? Well, maybe not. I mean, I was still in bandages, for Gd's sake. But pain, pain is a thief. It has robbed me these passed two months of so much. And I know that there is more to come. I know that this one is not going down without a fight. This is going to be a tough one. There will be surgery, and not simple surgery, I'm almost sure.

The worst part is that I am letting it rob me of my faith. I am angry at Gd. I mean, why is He picking on me so much? Last Friday night I started talking about Dr Kevorkian... poor Robert had to sweep up the pieces of that mess. Thank Gd for Robert.  I know questioning my faith is really not a good path to go down, for so many reasons. So I try not to. But com'mon... TEN YEARS since I had NF. It's been one thing after another. Ten years ago the doctors were optimistic that I will rehabilitate well after NF; I was young, strong, healthy.
Last night on the phone with Dorit, my homeopath (and long-time medical friend) I asked her how will I rehabilitate after this? So much time in bed, I probably will need surgery, I'm losing so much strength. She said "you're young". But I'm ten years older, and not as healthy anymore. I'm going to have to really work at rehab this time, it won't come easily. I already feel so weak and tired, and drained.

I wanted so much more from life. I still dream of my careers, of who I used to be.
(and I have nightmares of puss coming out of my belly, alone in a strange room, reaching for a water bottle with a parched mouth only to find the bottle empty... terrible nightmares.)

But I have to remember to be happy with what I have. I have what many people will never have... an amazing husband, 4 incredible beautiful children, a home in eretz Yisrael, and incredible friends and loving family all over the world. Thank you all for being my people. Your words are hugs to me.

Tuesday, October 17, 2017

Unwelcome New Chapter

I'm at the very scary, but not unimaginable point of wondering if this is EVER going to end.
The stomach pain is my constant companion. I have been taking the medicine for 11 days now, and there hasn't been much, if any change in the pain level. If I'm standing or walking around, I'm in pain, and it's a lot. I can't take it. I need to get off my feet for the pain to let up. Sitting helps, lying down helps more. I am rapidly losing strength because of this. My morale is in the dumps. I'm incredibly tired all the time. I wonder if this is it for my quality of life. This is where we've come. If that's the case, man, I'm not sure I want to be around to see it. I can't stand it any more. Sick is no life. I've seen enough. I've seen more than enough.

Yesterday I went to the specialist who Rav Fisher recommended to me. His name is Professor Fich, and he's the head of gastroenterology at Soroka hospital here in Be'er Sheva, where I live. He came highly recommend. I didn't actually have very high expectations, just because I already had a diagnosis, and had been through all the heavy tests, so I didn't expect much else for him to come up with. But I went anyway because I am still in strong pain, and it's really not getting much better. I am hoping I just have to keep being more patient, and this is a slow healing problem.

Anyway, professor Fich was quite respectful of the fact that I am in tremendous pain; not something to be taken for granted. Many doctors do not respect the patients pain, especially a woman's, and especially if it seems inordinate with the diagnosis staring at them in front of their eyes. He had my paperwork in front of him from my recent tests and whatnot. We talked, he examined me. He said that I have had all the tests, there are no other tests to send me for, but what he promised to do is to take on my case. That was a big deal, in my eyes. He is going to start by looking over my CT himself, with his own radiologist expert, and see if anything was missed. He instructed me to get back in touch with him on Sunday, he'll have had enough time to look over my tests by then, and if he has anything to tell me he'll know by then. I'm not expecting anything, honestly, but you never know. I think that for whatever reason ulcerative duodenitis in me is extremely painful, and it's going to be a slower healing process, and that's just how it is, and I have to just deal with it. In a way having the doctor find something else woulnd't be so great, unless it is something simple and heal-able.

This pain, though, it feels like the middle of my body is dying. I don't know how else to describe it. I don't even know what that feels like, although technically that very thing has happened to the middle of my body before, but I was in a coma, so I didn't actually feel it as it happened. Well, that's not fully true, I was in horrific pain when I had NF, but it was like an entire body pain, because, well, I was actually dying. OK, we won't go there. I know though that when I had NF I could barely move anything at all without tremendous pain all over my body. This, now, it's all belly. But wow, what belly pain it is.

And such tremendous fatigue. I feel like I need to sleep all the time, and when I look at myself in the mirror, I see someone with deep dark circles all around her eyes. I don't understand what is happening to me. I look so unwell.

I have a feeling that this chapter in my life is a very big one, and is a turning point, and not for the better. I want to be wrong about that. I want this all to heal and for me to get my energy back, and return to life as I knew it before this episode. I used to want life to return as it was before NF. Now I will be happy just to have the energy levels- and even pain levels- I had before this stomach episode (which is now about six or seven weeks). I just somehow feel that this is a big turning point, and not a good one. I fear in my inner most fears that this almost unlivable pain is my new normal. God Forbid. I have nearly dropped out of outside life, and cannot be present for most of life's joys. This is no way to live life. Please God let me heal from this. I cannot live this way. Not with pain, please God, not with this pain.

(I am doing a combination of Homeopathy, naturapathy, and Western medicine to help myself heal. You need not make suggestions. Thank you.)

Sarah Rachel Bat Tova

Sunday, October 8, 2017

Finally a diagnosis

The tests on Friday went OK. It's the preparation for them that is awful. But, OK, its over. My lovely friend came all the way from the north of the country in Tzfat to accompany me, and I was so grateful to have her with me. She stayed with us all Shabbat, that was great. Thanks, MD!

I have all kinds of new things to add to my health resume now. New things to learn about, research, take care of, deal with. Yes, the procedures on Friday did show up with diagnoses. That's the plural form of diagnosis... a few things showed up. Nothing too dark and scary, though, thank Gd. All very manageable things.

Turns out I have stars and stripes in the lining of my duodenum and stomach. That apparently means inflammatory gastritis and erosive duodenitis. Ulcers some might say, duodenal ulcerations, sores, not all the way through the lining. Often with this sort of duodenitis there is a bacterial infection called Helicobacter pylori (or H-pylori). Although I had had two tests for that bacteria already, the gastro doctor who was doing the scope on Friday took an internal sample to test for the bacteria as well. It, too, came up negative. So how I got this condition is probably because of overuse of NSAID's (like Ibuprofen, Advil and the like). That is certainly a possibility, being a person with migraines and chronic pain. So, I already knew that NSAID's were bad for me because they are bad for people who have kidney problems. But sometimes when you're in pain, you just reach for anything that can relieve it, you know? I know now, though, that I really have to totally stay away from Advil. That's it. Tylenol only sort of works some of the time, though, unfortunately. So what am I supposed to do? Have a conversation with my doctor.

Thankfully Topamax is not an NSAID. And also thankfully it is working against the migraines since I upped the dosage recently. Also thankfully I don't have to go off it; that was going to be my next line of defense if the gastro tests turned up nothing. I would have had to go off the Topamax in thinking that this pain is a gastro reaction to the medicine, being that this happened a month after starting the medicine. That would have been so problematic on so many levels. Thank God, for now, I get to stick with my migraine medicine.

In the meantime, the gastro doctor gave me medicine to take for two months, saying I should start to feel better within a week. Today is the third day on the medicine and I don't feel better yet, but I have to be a patient patient. I've just been sick for a really long time, I've been in a lot of pain, and it's been so hard.

I really hope that is it. I mean, I can't help feeling that we're missing something. Do ulcers hurt this much? All the time? I guess so, I mean when Robert put "constant pain" duodenitis into Google, 1,690 hits came up, so I guess that is it. So let's just work on that assumption.

I have an appointment with the specialist that Rav Fisher recommended on the 16th. I will definitely know by then if the medicine is working, and if I am feeling much better by then. I hope I can cancel the appointment. I am not canceling yet, though. I just have a "gut feeling" that we are missing something. I hope I am wrong. I don't want to go digging for more problems, and I desperately want this pain to go away. Time will tell.

Tuesday, October 3, 2017

still no diagnosis

I've really retreated from life this passed month. I've been mostly either in bed or on the couch, unable to really do much because of the abdominal pain I still have. There are still no answers, all the tests have come up negative so far. That's so far for the non-invasive tests we've done. We know what that means.... invasive tests next up. I really thought we'd have answers by now. I've had many, many meltdowns because of being in pain with no answers and no treatment plan. There was Rosh Hashana, then we were waiting for test results from cultures and whatnot, then there was Yom Kippur, and I'm still suffering. I'm going out of my mind not knowing what is wrong in my body. It hurts So Much, I've never felt anything like this.

My mind has been going to some very dark places. I've been alone a lot these past weeks. I'm in bed a lot... in pain. In bed, or in the bathroom. Things have been so bad. I've been really feeling like this is it... the end is near. I know that sounds melodramatic, but I get to write how I feel here, and I have to get it out. I think I am still somewhat traumatized by my friend Sabrina's passing last year; I feel like, well, I'm next. Here it is.
I tell you, health is EVERYTHING.

I look at people's pictures on Facebook... I have friends who are playing in orchestras, who are able to travel to beautiful places, who are able to go out to dinner with their spouses, who are able to do fun things any ol' day! It is hard to see these pictures while I'm in pain in bed. I miss life. I keep telling myself, if I get to get over this, whatever this is, I'm going to go to a nutritionist and get on a good regimen, I'm going to do yoga with a private teacher in my house (something I've wanted for a long time), get back to my Tai Chi, and do all the things I want to do with my husband, kids, LIVE.

I wish I could draw a line in the sand and just say from HERE, from this line, I don't have to visit any doctors any more.....

OK, fantasy over.

Back to talking about scans and tests about this issue I have here and now...

The only thing that showed up on the CT scan and the ultrasound is the one little gall stone I have. I've had that on all my scans over the years. The pain I have is not characteristic of gall stones, not at all in the areas that gall pain would be. And the blood test shows that my liver is doing well, so it doesn't look like the gall stone is the problem. And of course I'd like to avoid surgery. Intuitively I don't think it's a gall bladder problem... it feels like stomach to me. I'm also having problems swallowing. And my appetite is nearly gone. But I enjoyed the peanut-butter-and-jelly on whole wheat toast that Robert made for me today! That is one of my comfort foods.

We called our "medical rav", Rabbi Benjamin Fisher from the organization "מגן לחולה" ("magen l'choleh", an organization which helps match patients with appropriate doctors, among other amazing things). He has led us to all the right doctors each time I've had serious medical problems in the past years. Many of my past surgeries have been done by surgeons recommended by him, and have gone successfully. So, It was time to call him. I've been sick for too long with no direction, no good gastroenterologist, no diagnosis, and lots of pain. He told us who to go to; and it is the head of gastroenterology in Soroka (the hospital here in Be'er Sheva, one of my least favorite places on earth for so, so many reasons.)

That doctor does see patients privately, but even using Rabbi Fisher's name and my whole story, I couldn't get an appointment with him before the end of October. I took that appointment, and put myself of the waiting list for mid October, when he comes back from his vacation.

In the meantime, I went today to an anonymous Russian gastro doctor, a different one than the one I saw a few weeks ago. I told him that the pain is worse than it was a few weeks ago, that we need to proceed with endoscopy and colonoscopy. He examined me, asked the standard questions, we talked, and he was very sincere and very understanding. He took me very seriously, thank God. He scheduled me to do both procedures at once... this Friday. As in three days from now.

I'll be in "twilight sleep", he said I won't know that the procedures happened. I won't feel them, especially because I am a patient who is in pain, he will make sure I am fully asleep.

I am very nervous, but I am relieved to be getting these tests done soon.
We will at least then have some answers.

Or not?????? There's a scary thought.