Thursday, December 14, 2017

Hard times, hard times. Chanukah 2017

*Coming to you from Be'er Sheva Israel on the third night of chanukah*

I got the results of the MRI.
From the technician who was reding it, it looks like fibroids in my uterus are the problem. Nothing else stood out, except ovarian cysts, which I knew about. I'm going to see Dr. Mashiach on Monday, and we'll see what he suggests as treatment.
It's hard for me to believe that so much heavy pain is from fibroids. I mean, a lot of women have fibroids, it's fairly common. But I am in so much pain I can barely function. And why would this start suddenly three months ago? I did some reading on the internet, and I do see many women have heavy pain with fibroids, but somehow I feel like something worse is going on.

I have taken care of the ulcers and the duodenitis, and I went off the Topamax migraine medicine. But the pain persists. Originally I thought that going off the Topamax did help to reduce the pain a bit, but I realized, when I got back to Israel from my NY trip, that I was in less pain in New York because I was sitting shiva for my father. I wasn't making food, and I wasn't serving people. The opposite, I was mostly sitting around, and people were serving me. When I can rest, the pain is less. As soon as I got back home and got back into my regular life, all the pain came back in all it's glory.

I haven't decided yet if I'll go back on the Topamax.... I'm waiting to see what my migraine situation is. Today might be the first one; I feel one in my right eye ramping up. Let's see if Excedrin can stop it.

I gotta say, I still feel like we're missing something. The whole center of my body hurts. And even when I'm resting, when the pain lessens, it's a strange feeling that things are just wrong, I can't describe it. It feels like something is dying inside me.
I'll write again after my appointment with Dr. Mashiach.

In the meantime I made an appointment for next week to see my pain specialist (Dr. Z). I haven't seen him since I went off the Fentanyl almost three years ago. But if I have to go on living this way, I need pain medicine. It's just too much pain for too damn long. I'm suffering so much, and opting out of so many things in my children's lives, it's just too depressing.
It's not going to be Fentanyl, but I'm sure there are other options. The Percocet doesn't really help, and it makes me nauseous.

I saw my othopedic oncologist last week in Ichilov hospital. It was my bi-yearly follow-up for the PVNS. I left with more referrals for MRI's- for my thigh joint and my famously swollen and painful knee. We need to check if PVNS is in the knee now. So I have to set up those MRI's and go back to the orthopedic oncologist in 6 weeks with results.

That's the news... here's the weather...

66 degrees during the days, light rain around and about. Cold at nights....

No, that's not what I meant...

I meant emotionally.
I'm really not doing well.
My Dad died three weeks ago, and I'm in constant pain physically.
I have to keep living, I have to keep being in the world, I don't want to die, but I don't want to live this way. (just grabbed a tissue). I think about starting some sort of healing through Chinese medicine; I did a little reaching out and have a recommendation. I haven't called yet.

My life force is gray. It doesn't shine anymore. I have so much in me that wants to shine, but I'm in constant pain. I'm terrified that this is my normal now. I thought the pain I had before this was my normal, and I made my peace with it. But this, this is not normal, and I have no more peace to make with it.

It's not a good place in life for me. Let's hope for a working treatment plan on Monday. Let's hope for a pain-free Sarah. I don't even remember what that feels like. I honestly do not know my life without pain since I had NF.

And today I think is the first real migraine since going off the Topamax. It's coming on strong now.

May this holiday of light bring light to everyone, and may I be able to bring you all light very soon.

1 comment :

  1. Amen to your bracha to everyone. May very good news and relief come speedily.