Tuesday, September 12, 2017

Really God? More pain?

I walked into the ER on Sunday with unexplained belly pain and loss of appetite which had been going on for a week. I walked out, about 11 hours later, after being poked and prodded, having x-rays and a CT scan done, and a gynecological ultrasound as well, not much closer to an answer to the riddle. A few things showed up, but it just pointed to needing more tests.

Here I am still with the same problem. My appetite is all but gone, and the pain and pressure in my belly really only subsides when I lie down. But we can't live our lives that way... at least I am trying not to. But it's very, very hard.

I can't really explain what it's like to try to incorporate even more pain into my life. I go between saying to myself that this is all temporary to hearing that little voice in my head that says "no, honey, it's going to take a long time until this is worked out... if ever". I am dealing with a *significant* increase in pain here. And it's not as if I wasn't dealing with pain beforehand. With this, too, let us not forget that my knee is still acting up and hurts me constantly, and I have yet to clarify issues with that. Everything takes time, phone calls, waiting for calls back, paperwork, and waiting for appointments that are hard to get.

This is my life.
I lost out on being on the same planet as the working people at age 39. The doctor who I sued for malpractice, however, gets to keep his profession happily, and even throw me a big smile as we pass in the hallway of the hospital as he leads a band of residents he is teaching, Lord save them. "Hi Sarah" pleasantly surprised to see me. I did not respond. I could have said a thing or two to those residents at that moment. He's very lucky I'm not that person.

The community orchestra I had started to volunteer with last spring starts up again this week. I would love nothing more than to be there... but not this week. I can barely lift myself I am so weak, no less my french horn. My degrees and accolades hang on the wall making me long for those days. I am a ghost of that Sarah.

I may need some pain medicine, I don't know how I'm going to get through this if I have to be more active. I want to be more active, I can't let myself lose it. You know the expression "use it or lose it"...that's what I mean. Pain- it makes one "lose it". But you lose other stuff when you take pain medicine. We need to figure out what is wrong. My mind is going to the dark things- I try to stop myself from going there, it's a waste of energy. Unexplained pain is often a path to the dark things... I've seen so much cancer in my life. Many of us have, I know. I just have to keep it together and try to get in to see a gastroenterologist and get tests done. It all takes so much time. Weeks, months.

And I've put in a call to my orthopedic oncologist about my knee, hopefully we will get to the bottom of my knee problem. It may be PVNS (like a cancer, but not deadly, only deadly for the joint itself). I had that in the same leg, in the thigh joint. I hope it's not because that's pretty bad news.

And the infection on my skin graft is about to win the Guinness's Book of World records prize for the longest lived infection that won't go away and doesn't spread, just hangs out there. I went to the plastic surgeon the other day (yes, with the belly pain, in my condition, with Robert driving, dropping me off at the door, parking the car, etc). The surgeon hem'd and haw'd looking things over, pulled at it a bit (owww), and decided that it does need a scar revision procedure. He wants to cut away the whole pocket of infection, about 3-4 cm's, and stitch it straight. It would be local anesthesia, no new grafting, so it sounds OK. About a month recovery. Thankfully we have no date for that yet, and I am in NO rush to do that, as long as the infection isn't budging, it's on a back burner.

I have an ultrasound for my kidneys and urinary tract tomorrow. Nah, that won't be painful in my situation, not at all. :( Who knows, maybe it'll lead so some discovery of what may be going on here. There was some enlargement of the bile duct seen in the CT the other day, and I think I have (or used to have) gall stones, and that would be seen on the ultrasound tomorrow as well, so I don't know if any of that means anything as far as this pain is concerned, but it might.

The "chagim" or "high holy days" are coming up here next week- Rosh Hashana, followed by Yom Kippur and Succot. Very busy times, very important times. Times that I want to be in the synagogue to pray, and to be with my community. I haven't been able to go since I've been back in Israel, I've been too sick. Also with my knee the way it is I don't think I could walk that far. Although I keep thinking about that amazing hike I did in the Poconos in Pennsylvania! I hiked for about 5 hours, did 1,264 steps up and down (the people who keep Bushkill Falls counted, I didnt!), and that was just a month ago. Yeah, my knee was as swollen as a loaf of bread for a week thereafter, but I did it! And I have the tee-shirt to prove it. :) But with this belly problem, no way. I'm having a very hard time getting around. We'll rent a wheel chair for the holidays. That comes with it's own issues for me, but if it means the difference between being cooped up at home or being out, I do need to get out if I can. The question is if I am in too much pain to even get out for that long, even in the wheel chair.

One day at a time.
That's all I can do.
Let's pray for answers and solutions. I just have a sneaking feeling it's going to take a long time. And I am not happy with that feeling. This pain... it's just not OK. But I don't have much choice.


  1. So sorry you are having to deal with this. Praying for a solution soon!

  2. Love you, Sare. Sending hugs.

  3. wishing you light, love, healing. so so so sorry. and i somewhat understand.