Monday, August 14, 2017

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.


  1. I"m sorry this is taking over your trip home, Sarah. I really hope the infection decreases to the point where you can get some enjoyment out of things. I feel so helpless on your behalf. It's just so unfair that this keeps going on and on and on for you. :-(

  2. You need a black field blood test to reveal the bugs in your system, and a naturopath's guidance to health. Conventional medical care is not improving matters. I'm sorry you missed the kiddush and the presentation I gave. It was a fast overview of miraculous healing techniques which I now explain - by invitation - to doctors.

  3. Can' wait until you get your work up. Maybe a Naturopath could help! I hope you will find some highlights out there.

  4. So sorry you're in so much pain.