I'm not well, but everyone else is!

Happy to be back home.

I gotta say, though, I'm not getting much of a break. I keep waiting to write. Waiting for things to get better, waiting for something wonderful to write. Well, there are wonderful things... of course, there always are wonderful things, thank Gd! We made it back safely, the house wasn't robbed this time, and my kids and Robert are all healthy, happy and well, thank Gd! Dovie, 18+1/2, just started what is called here "yeshivat hesder", or a year of Torah learning coordinated with the Israeli army. He's in yeshiva, a brand new place, and I can't wait to hear from him when he comes home this Shabbat about how it is going. Ya'akov is in 11th grade, at the same school in Jerusalem he was at and loved last year, Shifra is in 9th in the same school she was in for the last two years, and Azriel is the "big man on campus" in his last year of elementary school, in 6th grade.

Then there's me.
I haven't been well since we came back (almost a week ago). I can't even tell you what's wrong because I don't even know, but somethings big time wrong. I haven't felt this rotten in a long time, and that's saying something. I have been working on the issues with my new GP who I just switched to when I came back, so it's been hard for her, too, because she doesn't really know me. But she's getting to know me. I switched because my former GP has actually kind of been just like a paper pusher for the last few years. Also that health clinic was quite a distance from my home, this one is much closer. It's also nice for me to have an English-speaking doctor. She's a lovely person, and a new perspective is always good when health issues are complicated. I feel bad for being complicated, though. I feel like I am bugging her with my details. This happens to be a very difficult time period, and it's hard enough to start a patient-doctor relationship without it being a time when the patient is unwell. So, anyway, it is what it is, and I'm sure that's going to work itself out.

Over the next few days I'm going to get some tests done and try to figure out why I'm in so much pain and what is wrong. It's mostly my belly area, but also my right lower back, like kidney area which I have been talking about for months now. I have an ultrasound scheduled in a few weeks for that. I have no appetite, and no energy, and can't concentrate, and my belly just hurts all the time. Not cool.
And I still have the annoying little infection on the skin graft. I'm supposed to go to the plastic surgery clinic on Wednesday about that. We might wind up talking about fixing the small area of the skin graft that keeps getting infected. I'll update about how that goes. Of course, getting myself out, picking up kids from school, making food, doing errands for the kids, going to doctor appointments for tests, it's all really challenging these days, I can barely concentrate, I'm constantly in pain (but try not to show the kids), and I'm so, so weak.

I really can't write anymore- too hard (painful) to have the computer desk on my lap in bed, and too hard to sit in a chair for extended periods of time. Yeah, it's that bad.

I'll update when I know more.
Things will get better, I know this is temporary. (I gotta repeat that to myself a lot....)
I have so many other thoughts I'd like to write. I just can't have the laptop near my swollen knee (which I had x-rayed today... stage one in trying to diagnose the problem there, but it probably needs an MRI), and leaning too close to my belly with the laptop doesn't work well either. It's come to this. This is why I haven't been writing. weh.

Good night.

xoxoxoxoxo

Sarah Rachel Bat Tovah

Pain in the USA, 2017

Writing to you from the good 'ol U.S of A, specifically, the Pocono mountains in Pennsylvania.
We've been pretty busy, but also resting a lot. Mostly spending time with many family members, which has been the main goal of this trip, so that's good. We came here to the Poconos today, Sunday, to a beautiful rental house that Robert found on the internet for us for the week. It's near a beautiful waterfall, river, and quaint mountain and country activities. It's our family vacation time.

I wish I could say that it's all peachy keen with me, but it's not really been smooth sailing. Not by a long shot. In fact, I'm quite worried about all the pain I've been having. I took all the antibiotics that I was supposed to take, and they didn't take away the infection on my skin graft. They ripped up my stomach something awful, though. It made for a pretty bad plane ride... I was in that little plane bathroom more than in my seat. Ugh.

So about that infection... I don't know what to make of the whole thing. I am so confused. I went to CVS, and bought a wound dressing of Silver Alginate, which said on the box kills Staph infections. It seems to have really worked. I have been putting little squares of it on the open wound every other day or so, and it is getting smaller and smaller. It's really awesome. But, at the same time, I am having more and more pain in the whole Gapey area, like the entire graft area has been so painful, it has been hard to just walk, or sit for any length of time. Lying down is the only way to remedy the pain. That is *not* good. I have no outer signs of infection, so as I said, I don't know what to make of it. I am, for now, deciding to deal with it when I get back to Israel, unless I see or feel outer signs of infection. If this pain does not go away when I get back home, I have to seriously consider going on a pain medicine again. Not Fentanyl, a different one. I completely don't want to do that, but I cannot live with this level of pain, it's definitely too much. I don't know why it is happening, other than this vacation is just challenging my body too much. If that is the case, it should calm down once I get home after a few weeks. Let's hope that is the case. But all this pain makes me very nervous. I can feel the whole mesh that is behind Gapey; whole thing, and all the clips that hold it on. Not good.

Also, on this trip, and beforehand for about a month before, I have a consistent lower right back pain. I have a gnawing suspision it is a kidney problem. I have had blood tests, like when I was in the ER a few months back, and the reading for kidney function was OK, but the pain is very persistent. I have had Nephrocalcinosis (also known as a type of chronic kidney disease), and haven't had a full kidney work-up in many years, and with this lower right back pain being so consistent, something is wrong. When I get home I'll have a complete kidney work-up done. I am also planning on switching GP's.

And lastly, my knee (left) is consistely swollen. The swelling has not gone down for over a month. We have no idea why. It is also painful, especially with stairs. I have never had knee issues before this, so either it is connected to the staph infection with Gapey, or it could be new PVNS tumors showing up in the knee this time instead of the thigh. I may have to get an MRI and go to my orthopedic oncologists at Ichilov hospital to get that diagnosed.

In short, I'm kind of a mess. I need to be home, but I'm not, and I have to make the best of it. It's not so easy. I can't really enjoy the vacation with all this pain, it really stinks. I'm just taking this day-by-day, sometimes hour-by-hour. It's really not simple.

Someone on my NF group today wrote about the difference between surviving and living. I wrote that with pain levels rising, I'm finding it harder to live, and I'm going into surviving mode. I'd like to choose to live, though, that's for sure.

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! )