Sunday, December 3, 2017

my heart hurts- my abdomen hurts.

I got the suitcases unpacked, and am trying to get over my jetlag. I am so overwhelmed with everything from the past two weeks since my father died. I am still kind of shocked, but I'm getting more used to it I guess. I feel that deep, deep saddness that I know well from when my mother died... except now I'm "orphaned". We had an "open house" here for two evenings, in which people-- friends from my community-- came over to give me condolence. I had already sat shiva for Dad, but in New York, without my people around me. The open house was Robert's idea, and it was a really good one. I got to tell things from my perspective, and talk about my feelings and experiences. Our shiva in New York was full, robust I'd even say, but I didn't know 95% of the people who came, they were all Peter's friends from Manhattan (who all seem to be wonderful people). So holding this open house was good for me, thank you to everyone who came.

I was supposed to see professor Mashiach today, but the secretary called and cancelled. She said he has too many procedures scheduled for today and cannot see me. This secretary knows I'm in pain, and have waited for this appointent for a month. She couldn't even offer me a new date yet. I have an MRI scheduled for Tuesday, so at least we'll have that, but I don't have an appointment with the doctor who I think I should be going to.

This is just going on and on.

I did go off the migraine medicine (Topamax) completely. Interestingly, I ramped *up* on the dosage last summer when I was in New York, and now I ramped *down* from it in the same place. I've been off of it for a little over a week. The interesting thing is that the pain DOES seem to be less. It hasn't gone away, not by a long shot, but it did go down. So now I am left with more question marks than answers. But the good news is, as of yet (it's only been a week), I haven't had a migraine. I know they will come back, though. I can pray some magic was done by being on the Topamax and I'll never get the migraines again, but I have the feeling that the other shoe will drop, it's just a matter of time.

So today marks two weeks since my father died. I am still in a sort of shock about that, and so deeply, deeply, saddened. I loved him so much. So, so much. My heart is aching, and the tears just keep flowing.


Wednesday I'm supposed to go to Ichilov hospital (in Tel Aviv) to have a follow-up for my PVNS, and to see if I have it in my knee- the one that is constantly swollen and painful. (I'll need an MRI for that, too.)

I have to voice this here: I am worried that I may have cancer of some sort. I hope to G-d I'm wrong. But in the meantime there is no diagnosis and obviously no treatment plan, and I am living my days at much less than half capacity because of the pain.

When my brother said, about sitting shiva, "I'm glad we only have to do this twice".... the thought went through my head "I'm next".
I hope I'm wrong.
But I just have this feeling that I'm dying of something which is as of yet hidden.
I hope I'm wrong.

Maybe, like Robert thinks, the more time the Topamax has to get totally out of my system, the better the pain will get. Intuitively I don't think so. I think somehow the Topomax did have the side effect for me of abdominal pain, witnessed by lessening of pain when I went off of it. But it's been over a week, and the pain isn't going down any more than it did from the first few days. Something is very wrong inside me. I hope the MRI can help direct us. And I hope Hashem leads me to the doctor who is wise and intuitive enough to help figure it out.


  1. As always, dear friend - thoughts, prayers and the very best juju I have to offer are all with you. <3

  2. hi Sare, want an update

    Dev from NJ