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

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.

I can't do this too much longer

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

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

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

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

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

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

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

It's very lonely.

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

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

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

Infection strikes again

(this blog post does not end on the same day it starts... it's been hard to find time to write, I've been very exhausted, and very busy... bear with me here...)

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

You have no idea how much I am freaked out today. I don't even know if I can express it in words.

First of all-- DAD: Don't worry, I'm really OK. I promise. I am not writing this because the world is collapsing. I am writing this because this is the only place I "discuss" these hard feelings I have. I'm OK. I repeat, I'm OK!! Say it out loud to yourself "Sarah is FINE". Now, smile.
There. That's better. Now I can write. Love you. :)

OK, so why am I freaked out? Well, here is a picture, then I'll explain it for those of you who don't understand Hebrew...

The page goes on to give more information about what antibiotics
the specific bug is sensitive to. Unfortunately, the first three in the list,
I am allergic to. So we chose the fourth. It's sulfa based, hopefully it'll do the job.

OK, That was yesterday... Sunday. Between yesterday and today I feel like it's been a week. See if you can follow what went down these two days:

Sunday: Woke up, felt OK except for the aggravating and painful infection in my skin graft and my swollen knee of unknown origin. I had walked a lot over Shabbat, and my knee was very sore and swollen. But I had my Osteopath appointment to go to in Jerusalem. I also had to find out the results of the wound culture. I called my health clinic, had to wait an eternity for a nurse to answer. Then I was told that she can't give out results over the phone, but I can retrieve it over the internet with a code. OK, I didn't know that. So jumped on over to the internet and managed to wrangle the results to show up. Boy, was *I* surprised! At first I thought that S. aureus meant Strep A. That's what I had when I had NF. I was sure that was what it meant. All day yesterday I was saying that's what it is. But my doctor said I didn't need an oral antibiotic for it, just try another cream. I tried to reach my doctor to talk to her, because my knee was also swollen, and I felt I had a systemic infection going on and she wasn't taking it seriously enough. But I couldn't talk to her, just send texts to her through the secretary. It was nuts. So then the secretary said that my doctor said just wrap the knee and keep it elevated, and put the new cream on the infection.

Then I left in my car to go to Jerusalem. I was getting more and more anxious as this was settling in, as you can imagine. I have active strep A, and my doctor is being pretty passive, in my opinion. I have tried many creams over the month. I have tried triple antibiotic cream, iodine, neosporin, all of them many times, and I washed the area many times with anti-bacterial soap. All that, and it still cultured positive. Now she wants me to try another cream? Did she forget entire sections of med school? I said a few weeks ago that I think I need an oral antibiotic. She said she didn't want to play around with oral antibiotics with me because of my allergies. But this, this is playing around with my life. Antibiotics have a purpose in the world. I haven't been on any, or needed any in almost two years. It's not so terrible to use one when necessary. I felt she was being cavalier.

Oh, and I forgot to tell you that I did go to the health clinic last week on Friday to try to get an oral antibiotic. Knowing I'm traveling soon, and having this open wound on my skin graft has been very heavy for me. My own doctor isn't in on Fridays, but you can see the one that is on. That doctor wanted a swab of the wound in order to choose which oral antibiotic to give me. *But* you can't do blood tests or any cultures on Fridays in Israel unless you do it at the hospital directly. So, she gave me a referral to the ER to get an urgent swab, with the goal of oral antibiotics. OK, I thought, we're getting somewhere.

I got to the ER, waited a bit (not too bad), and saw two different doctors; one plastic surgeon, and one internal medicine doctor, both less than half my age. The whole visit was absurd... they didn't do anything the referral said to do, mainly take a swab of the wound, for the purpose of choosing which antibiotic to give based on knowing which bug was infecting the wound. "No, that's not necessary", "come back if it gets worse". They weren't impressed because it clearly wasn't cellulitis... yet. I said the object was for it to not *become* cellulitis. They said I have no fever. I said I also had no fever when I had NF. They said this is not NF. I felt like I was talking to a wall. Really? Oh, I coulda SWORN this was NF!? Huh, whaddya know! grrrrrrrrrrr.......... like I had nothing better to do on a Friday afternoon than argue with ER first year residents that I need antibiotics for an open wound. The plastic surgeon resident had the gaul to say that the skin graft skin seems a bit dry, I'm not taking care of it well. I almost screamed at him- "I have had this skin graft since before you were in high school, buddy, I think I know EXACTLY how to take care of it".

What I should have said before I walked out of there without antibiotics is "the last time we all played this game of 'let's not give Sarah antibiotics for an infection' game, the hospital had to write me a big, fat check". But, you know, we never say these things. I just walked out. I was too tired, and too much in pain. Oh, and my knee was swollen, too. I was thinking the knee swelling was the infection spreading, and that worried me, but again, the ER was dismissive about that as well.

I spent a painful but also enjoyable Shabbat with friends, trying to forget about my issues. But it was impossible to forget about them, pain does not let you forget about your issues. Ever.

On Monday I went to my family doctor. She was a little perturbed that the ER did nothing, and she did the swab herself. Then we had to wait for the culture. She examined the wound, and my knee, and felt the two weren't related. I continued to feel they were related.

I'd wind up waiting the whole week for the culture results.

So now were back to where I wrote up there ⤴ about finding the results on-line, three days ago. That's when I thought I read Strep A. It freaked me out so much, you can't imagine. It was a whole 24 hours later that I learned that it was staph. Mind you, that's no better, and can also cause NF, but for me it's different somehow. In fact, I learned that when I had NF, I had a combination of strep A *and* staph. I hadn't known that before. The infectious disease doctor was looking at it in my file right in front of her. Interesting.

OK, let's now jump to the day after I saw the osteopath, which would be Monday. I had set up an appointment with an infectious disease doctor who I know and trust, at Soroka. I had her cell phone number, and she had time to talk to me. Finally a voice of reason. She made room for me in her clinic the next day (Monday). It was with her that I learned that S. aureus means Staph A, not Strep A. OK, different bug, same bad. She looked at my knee and was not sure how to proceed. If it is swollen because of the infection, I'd need IV antibiotics, and that means hospitalization. If it was swollen because it is reacting, or for some other reason, then I can take oral antibiotics and go home. She didn't know, so she called an orthopedist in the hospital, and set me up to go see him.

I got to him, all the way on the other side of the hospital grounds. He took some fluids from my knee... nah, that didn't hurt AT ALL! No siree! (wehhhh)
It turns out that the fluid was not infectious, and my blood test was within normal limits, and I had no fever, so I got home (four hours later) with oral antibiotics. WHEW!!!!! With our trip to the states coming up days later, hospitalization and IV's were not on the agenda. I wish this could have been taken care of the week beforehand when I went to the ER to get it done *then*. Oh well. Everything at the right time.

I am on a sulfa-based antibiotic. It's the 4th one on the list of what this staph bug is sensitive to, but the first three I am allergic to. Hopefully it'll do it's job. It is wiping me out, that's for sure. I am so, so exhausted, and it's making me dizzy also. Quite unpleasant. Makes me feel weak, tired, weh. It's a seven day course, so I'll be on it until next Monday night, at which point I will no longer have a staph infection on my skin graft, RIGHT? Right! This has been going on for over a month.

The knee is still hurting, and still swollen. Only time will tell if it heals with the antibiotics, or if something else sinister is going on there. I haven't really had knee problems. I'm concerned that it may be PVNS tumors, but I'm not jumping to conclusions. Can't do anything about anything until I get back.

So, I have started on my new migraine medicine, Topomax. I am ramping up to the dose that the neurologist recommended. I have hopes that it'll work, and that the side effects won't make it too hard to stay on! I have a few new tricks up my sleeve for SOS when a headache does start to come on, and so far they have worked. I have stayed out of the ER for migraines now for a few weeks, so that's good. They have started up a few times with me, but as I said, I have new tricks up my sleeve that actually work! One of them I can't use in America, though, I don't have a license for it there. We'll see how things go.

So there are a bunch of things going on now, medicines changing, antibiotics being taken, hopefully this wound on my graft will close, and we're flying tomorrow. It is such a long trip.... we're flying with a stop-over in Moscow. Six people, lots of suitcases, everyone with two passports. Lot's to remember.

And I'm just so tired. I just want to see my Dad already! And my brothers, of course, and cousins, and everyone else there. But the trip is a hard one. It's so, so long. And the infection is right where the thigh bends, makes it very uncomfortable to sit for too long. I wish I could just click my heels....

So, you'll hear from me next over there!
Bye for now!
(BTW, we have a house-sitter this time, so I am much more at ease! )