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

Too Much.

I haven't been able to write because of life getting really heavy and scary of late. Not with my health, but that of my friend Sabrina, who's daughter I often help to take care of. Sabrina is very, very sick, and her daughter (6 years old) needs taking care-of, full-time by someone else. We pray it's a temporary decline in Sabrina's health, but there is no way to know until you know. That "someone else" to take care of Tessa has been me. I have also been trying to take care of Sabrina and get her what she needs, she is living alone, and I am very worried about her. This all weighs very, very heavily on my heart, as well as  the hearts of my kids. It's been a helluva week.

My kids are going through a very hard time about it, too. Thank Gd they are very expressive and verbal, and I have raised them to speak whatever they need to say to me, no matter how they perceive it may make me feel.

They feel that because I have been sick so much in the past 9 years (practically speaking all of Azriel's memory, and most of Shifra's life), they don't get me for themselves as much as *they* need; taking on another child isn't OK with them. They told me (separately, in different words) that they never know when I will be sick or unable to take care of them, and they feel insecure in my consistency. Guess what? They are right. I know you are all nodding your heads.

In the meantime, neither Sabrina or Tessa has other family. We are their people. (not only my family, there is another very loving family also helping take care of Tessa). Sabrina needs help and she is presently living alone in her apartment. I will do what I can to help her get the help she needs.

But I am fraying at the edges emotionally. 

It's all been way too heavy for me, and I've been paying that price. There is a reason I am not working as a doula anymore. I don't have consistency and strength to give. I wish, more than anything in the entire world, that I DID.

In the meantime, my father and his aide are coming HERE on Wednesday from New York!!!!!!!!!!
They are staying for three weeks. It's very exciting!!!! I pray that his health and strength will hold up, and we can have some quality family time. I'm nervous about how he'll do on the flight, but thankfully his lovely aide, Nina, will be by his side the whole time. She was my mother's aide, and after mom passed away in late June, Nina decided to stay on and help my father. We are so grateful for her. So now I have to clean the two rooms downstairs that they will be sleeping in...

My CT scan was inconclusive for major problems in my hurting thigh joint. It pointed out a few lesser problems (liver cyst, ovarian cyst, structural deterioration in my hips and back bones at the bottom), but we didn't get a definitive answer about the thigh joint pain and occasional fever.

My doctor agreed with me that we should be looking at the diagnosis of endometriosis.

Endometriosis is very painful.

Although my symptoms point to it, is is clinically undiagnosable without laproscopic surgery, (which I plan to avoid). My doctor told me about a new endometriosis clinic in a hospital in Tel Aviv where I have an appointment to go to in January. They opened a whole wing of a hospital for it. Thankfully my health plan already OK'd payment for it, which was not a given, because I don't have a solid diagnosis in this case. My doctor (I'm talking about my GP here) told me they have ways of lasering the wayward endometrium, as well as other new techniques to help with the disease without operating. In my case there is a lot of scar tissue adhesions in the same area, so it may be complicated. As long as I am having this level of pain, and the fevers half the month. I need to try to get help. It seems like I always need to try to get help.

BTW, the endometriosis is connected to the NF like almost every health problem I have now. How? Well, the scar adhesions in there are mainly from NF, and endometriosis (uterine tissue growing abnormally outside the uterus) is attracted to scar adhesions. It hides under them. Also the appendicitis (may or may not be related to my immune system problems after NF), and another procedure I had to have years back because of the effects from the NF damage in my life. That procedure, in a very small percentage of women, can lead to endometriosis (we just found that out while searching the two words together... these are the things nobody tells you beforehand.) I would have never needed that particular surgery if the NF hadn't changed my life so drastically.

I keep hoping that I will be able to move on.

My health has been marked for a lifetime of problems. I now have fairly frequent chest pains, but my doctor says it doesn't seem cardiac. It doesn't make it hard for me to breathe, just, uncomfortable chest pain, like something heavy is on me. I, personally, think it's stress. I think I am so, so stressed out with what is going on with Sabrina and Tessa, and so worried, that I am taking it all inward. I have duly notified my doctor about it, and if it's still there in a few weeks (the chest pain) we'll do an x-ray.

I am definitely overwhelmed with life.

I'm not sleeping well. 

I am working to find balance.

On the bright side, my migraines are TONS better. I am on a new migraine medicine now for about six weeks, and haven't had a bad headache in about a month. I am supposed to take a bit higher dosage of the migraine medicine, but I am keeping it at a lower level for the time being, if it works, it's better for my liver and kidneys to keep to a lower dosage.

OK, I have to go. I have a deadline to meet in writing a story for a brand new magazine! It's a magazine for Jewish women who are dealing with chronic illness. Hmmmmm, we know anyone like that?

With my father coming on Wednesday, no telling when you'll hear from me again. But I'd love to hear from you! Leave me a message on the blog. Thank you! XOXOXO

taken last week at Dov's yeshiva in BatYam (near Tel Aviv)
Ya'akov couldn't join us, unfortunately.

The wait for a diagnosis

Just popping in to say that I haven't been able to write recently. Haven't been able to play horn, or write my book, either. Having a rough time physically. I don't feel like getting into all the nitty gritty, but we are waiting on CT scan results to hopefully cast some light on what is happening in my body that is causing me pain and discomfort. And low-grade fevers.

This is a time period that could take a while, trying to get a diagnosis. If the scan comes back with no findings, I'm going to take it to a radiologist-specialist to get a second opinion. I know that with my history of rare and unusual diseases, a second opinion is usually needed.

If the second opinion doesn't turn up a logical diagnosis, we may wind up going with the diagnosis of Endometriosis, which is not visible on any scans. There is no cure for it, either, except for laproscopic surgery. It'd be unusual to have this with an accompanying fever, but there are instances of that on the internet I've seen. Since the only "cure" is removal of the endometrium with laproscopic surgery, or wait for menopause, I'd be in a quandary. It is really laying me up, and often. Like, tremendous pain in my groin/thigh area on right side (been happening for well over a year, since before my last surgery last October), and the almost-daily low-grade fever is a killer. I can't take analgesics very frequently, so, yeah... quandary. But, we're not there yet.

I may be quiet here on my blog until I get a diagnosis. I am really just trying to make it through my days. Having said that, I *am* making it through most days. I am also taking care of my friend's 6-year-old daughter (my friend is struggling with very difficult health problems, much harder than mine. Gives me perspective) on a pretty regular basis. She sleeps over here at least once a week. I push myself when I can for her. Last week, though, she got to school quite late in the morning because I just could not get up. My head was a fog after a difficult night's sleep, and Robert drove everyone to school. My kids' schools are on the total opposite side of town than her school, so unless I get up and we drive both cars to get kids to school, someone will be late. It was Tessa (my friend's daughter). Robert wrote her a note, not a huge deal, but I can't over commit to take care of her when my own health isn't reliable. Robert & I are a team in managing anyone in our care, and he does come through also regarding Tessa, but it's not at all ideal if I am not physically there for her whenever she is awake. She depends on me, and is quite attached to me (as I am to her, as well).

Life is complicated.

I am mainly working on myself regarding having gratitude to Hashem for everything in our lives. When I can focus on gratitude, my heart is full. Let's all do that work- gratitude... it makes such a huge difference in life. I redirect my focus there as much as possible.
(oh, and guess what?? I am totally *off* the Lamictal. I took it for NINE years. It's out of my system. Gratitude.)

Yearning to make goals

It felt like I was wandering in the desert for 40 years (or perhaps 9), and had arrived home when I picked up my horn to play for the first time last week. It was so incredible, I almost don't have words for it. Picture two pieces of inert material being connected finally to complete a circuit; electricity being produced from what was inert. My two arms holding the horn, holding the metal, the mouthpiece put to my lips for the fist time in so many years, the circuit was closed, energy flowed. It was like getting a hit of Oxytocin, really. And playing... talk about muscle memory. My hands and my lips knew it all, knew where to find the notes, how to string it all together. My fingers literally knew the music before I thought about it, they just did what they know to do. I was in **heaven**. That first touch of the mouthpiece to my lips came with a palpable feeling of relief, "Baruch Hashem" uttered under my breath.

Then again two days later... played for a long time, with no music in front of me yet. Just tones, scales, stylistic techniques I dusted off, and excerpts from concertos and symphonies. I hit the top of my range, and the bottom, and everything in between. Huge Oxytocin hit- the love hormone. Making me want more.

Last night, Saturday night, with a low-grade fever, I pushed through feeling blah and opened up my horn case again. This time all my kids were home to express their surprise and happiness to see me playing. Ya'akov took a video. He said "in case you die"... thanks, buddy.

I let myself fantasize about playing with an orchestra again, or even just some chamber music. My yearning has been much more awakened, I want it more than ever. That is one of the reasons I have not played for so long, it hurts too much to not play music with other people.

Today I couldn't get up in the morning. Endometriosis could be the culprit, or scar tissue adhesions from the multiple surgeries could cause it, but quite regularly this happens to me (few times a month). Profound exhaustion straight from the morning, bending-over pain in my gut, on the right side. The only way to diagnose either of those conditions is with a laproscopic surgery, which I *don't* intend on doing. A while ago, my spiritual healer's "bio-tensor" machine diagnosed that I had endometriosis. Who knows. Not much to be done about it. Point is, it's been hard to make it through the day today. Which brings me to my point.... disappointment. I never had any of this stuff before I got sick. Only rarely had migraines.

I'm one step away from totally being off Lamictal... one more dose (2.5 mg) to cut, a few weeks of unpleasant withdrawal from that, and I'm done. That'll be a milestone.

What lead me to taking out my horn last week for the first time was meeting with my previous therapist, Lily. She encouraged me that yearning is good. It means we are alive. I also met with my spiritual healer, Miriam Maslin later in the week. I got the internal boost that I needed to surge forward, and to trust in Gd, and be **grateful** (to Gd).

So yes, I am grateful. Grateful that I can still play horn at all. Grateful that there may be a glimmer of hope for me to play in an ensemble again. I just have to keep grabbing onto that glimmer of hope, and keep being grateful.

There is a sentence that's been in my head for many years- "every time I make goals, I get sick, or I need another surgery".
That sentence does not belong in my head anymore. I choose to wipe it out.
I am also, however, not making goals. But I yearn to.

Inflammation: it's not over. (with a surprise ending!)

I was just looking through some old blog posts looking for something specific, and I wound up clicking on some interesting titles, having forgotten what they were about. MAN, I have been through So. Much. It's flippin incredible. Reading old posts, I inspire me! I hear lots of times that my blog inspires people. I don't quite understand why, but reading back (this evening I was at the beginning of 2013, right before Ya'akov's BarMitzvah) shows me how strong I really have been. Raising young kids through all the surgeries and infections and more surgeries. Whoa. It's just been so crazy.

And it's not really over. I mean, so much is better, thank Gd. The right thigh joint surgery was definitely a success. I feel that very confidently. I have confirmation from the physical therapist, too. I now have physical therapy once a week, and hydrotherapy once a week (in a pool in Soroka). It's a good groove. Oh, and just started back to Tai Chi, slowly. It is very taxing on the thighs, actually. But it's good. I'm going to get stronger with all this.

So why would I say it's not really over?
I looked fine when I went to synagogue this morning. Chatted with everyone, smiled all the time, had an easy, pleasant time. I walked back and forth on my own two legs, baruch Hashem! Not to be taken for granted.

What was behind the scenes, though (although I did share it with my close friends) is that I was drugged up on Advil. The fever and strange thigh pain was back. It hit on Friday, like a bomb, with a quite sudden deterioration, just like last time when I went to the hospital (three weeks ago). I still don't know what it is, but it has flare-ups, it's inconsistent. This particular pain has been going on for well over a year, but 1) I had assumed it was part of the joint problem, and 2) the occurrence of it with fever just started happening. Since the joint has been fixed, now, by the process of elimination, I know that this is a separate problem. It's upsetting.

I have reason to think it may be endometriosis, but that can only be truly diagnosed with laproscopic surgery, and that is ***~~~out of the question for me~~~***. The idea of another surgical procedure makes my stomach churn. There is no real cure for it anyway, so why bother with the trouble of diagnosing it? I have had multiple ultrasounds of the area, CT, and MRIs, and nothing showed up. As I said, it's been going on for a long time. The diagnosis of endometriosis is also by process of elimination, but the thing is, I have almost no common symptoms of it. Just the sharp, hot kind of pain, and low grade fever (which is unusual, and last on the list of possible symptoms). Once, in my sessions with Miriam Maslin with the biotensor machine, it picked up endometriosis, so that is also why I am leaning in that direction. It may go away with menoapuse, but I'm not there yet.

(note from Miriam Maslin: Just for clarification, the machine that I use is actually called either a Frequency or Bio-Resonance Generator.)

It's the fevers that make the pain kind of scream at me, not the pain alone. Pain alone I am familiar with, and if I know it is benign, I can just take Advil and go about my business. But the fevers, indicating severe inflammation, give me a red flag, you know? I can't ignore it, as much as I want to.
As of yet I'm not sure how to proceed. Regular western medicine is out- all the diagnostic tests didn't show anything, and I am not going through lapproscopy, or going on hormone pills, so I don't want to go there. I'm going to go non-conventional. It's time.

Why is my body so inflammatory?

BTW, I haven't mentioned this yet, but since my last surgery almost 7 weeks ago, my throat hasn't been right. I lost my upper singing range. And, now when I swallow, I have an extra "click". It doesn't hurt, but bugs the heck out of me. I wonder if the breathing tube during surgery made scar tissue. I've had a lot of breathing tubes in my time. Every general anesthesia.

Again, inflammatory process?

~*~*~*~*~*~*~*~*~*~

And last, but *by no means* least, some intense, huge news:

There has been a lawsuit with us against the hospital going on for quite some time now.
The other day, I signed on the settlement. It's good. It doesn't take away what happened to me, but Gd made good on it for us. I am grateful. One huge milestone. I'm also eternally grateful for it to be over.

My John Hancock

Three of us... not our direct lawyer, but a partner.