Tuesday, June 26, 2018

my pilot light is dimming

I don't even know where to start, or what to write.


My laptop died last week, so that is one reason I haven't written recently. It's only one reason, though. I am writing to you from a new laptop... not yet formatted how I need it, but getting there.

[actually as I was writing, the new -refurbished- laptop died too. I'm finishing this blog entry on Robert's desktop, which is uncomfortable because I have to sit in a chair for too long, and because his keyboard is too mushy for me.]

You know what? NOTHING is important to me anymore. Really nothing. Nothing material, anyway.

I barely even want to live. My every day is consumed with pain and sadness, who would want to live?

What is important is friends and family.

Some friends are dropping away. I heard that's to be expected, but it doesn't hurt any less. People
can't deal with this level of problems when the problems are not getting better. I understand them, I don't want to live with it either, but I don't have the choice. Nobody is calling (except HF- thank you so much), I may get a message from my closest friends occasionally. They have no idea how my life has turned into zero; and it's sub-zero without them.

And family, what little of it is left, I hear nothing from anyone. Everyone gets to move on in life. Me? Whatever.

My immediate family is everything to me, but even to them, it's trying. I'm so often in pain, and so often so deeply sad, I'm a mere shell of what I used to be. I went out with Dov (19 years old) the other day to a nearby lake. We had planned it for a week, that we'd spend special time alone together on Sunday. It was great. Except that I was still recovering from an ear infection, and my ear started really hurting me when the wind kicked up at the lake. Then that evening I had a migraine, and couldn't sleep all night.
I'm in such a state that anything throws me off completely.

It was great to spend the time with him, but I need ME. I need to have my body and soul returned to me for proper usage. I am a complete shell of my former self. 'Former' meaning before this intense abdominal pain began last September. More former than that I can no longer want.

Remember when this all started I said I had a feeling it wasn't going to go down without a fight? How did I know? How did I know this was going to be a life-changing situation? I just felt it, deep in my gut, so to speak. I've been through my share of life-changing situations, I knew when this pain started, that it wasn't at all good, and that it wasn't going to go away easily.

A few weeks ago I ran away from home... for a Thursday-Friday-Shabbat alone, at the Dead Sea. I literally ran away, I barely even said goodbye because of the emotional state I was in. I didn't even know where I was going, I just needed to get away.
But you know what? I'm in constant pain. *Nothing* takes that away. I took it with me, obviously. It was a nice Friday at the Dead Sea, but Shabbat was lonely, and I was in lots of pain. Didn't give me any real lasting change.

I have seen a few doctors since I last wrote.

My friend recommended a certain gastro doctor she knew. I don't know what sort of doctor I need, if it's gastro, of surgical, or internist, or infectious disease. But, on a high recommendation (and great desperation), I went to see this gastro doctor she recommended. It was a long drive, about two hours away. Robert drove, thankfully. Again I explained my plight. She listened very attentively, was extremely intelligent, and asked good, targeted questions (and looked me in my eyes, a rarity for doctors). She looked at my CT scan. We left there with her saying she wanted to consult with the head of surgery in a hospital in the north of Israel (Afula) who happens to be her husband. OK, so we waited.

Of course she didn't get back to us after a few days had passed. People in general don't get back to you-- I am so fully aware of that, it is just another point of hardship of life. Robert wrote her a text (she had given us her private cell number), and she wrote back that we should make an appointment with her husband (chief of surgery in the northern hospital). We saw him on Monday (yesterday).

Long story short, he was a lot like his wife... amazing listener, very intelligent and clear, caring. We had an hour and a quarter consult (extremely unusual for private Western doctors) and exam.

Nothing yet. He'll get back to us after he has the chance to consult with the surgeon who put in my mesh & clips, and to look over my (new) CT scan with a radiologist he knows.

He made sure we knew that he understands that it's very complicated, and he may not be able to help me. But that he wants to explore options by doing some consults on my behalf. He may think about an exploratory surgery, but doesn't know yet. He said he thinks the mesh is folded over on itself in my belly.

And as far as I can see now (not very far), I'm still going to the Mayo clinic in July... the 20th, to be exact. Robert is planning to accompany me (new development). They have set up for me a team of diagnosticians- all the sorts of doctors I mentioned above (internist, surgeon, infectious disease doc, gastro). I just don't know where this will lead me.

Bottom line now? Life is so awful, I don't see hope on the horizon. What is life like with no hope? No reason to wake up, nothing can be accomplished during the day, and often a headache by the nighttime from crying. It seems to me that the world gets to keep on going, and it is leaving me behind. But I'm alive, so that's the problem. I'm not only alive, but I'm locked into a not-functional body. I have a tremendous amount to offer the world, and my family, but I'm locked in. I haven't been able to work, or pursue any of the passions I have. What's worse is that it is all dying... the passion... it's all dying. My light is slowly, painfully, going out. All I have from sunup to sundown is harsh abdominal pain. There is no where I can go, nothing I can do. And the depression that has arisen as a result of that makes life impossible entirely.

It's not sustainable.

That, together with family & friends dropping off the radar?
Yeah. You got it. But you probably don't.
It's really impossible to understand my situation unless you live with me.
And even then, I know that nobody can understand.


  1. At least know that I care enough to read your updates and pray for you everyday....

  2. B"H Dearest Sarah ......... Love from Chana

  3. Sarah, Oh sweetie you are about my daughter's age so I think I can give you some mom'n. Hang in there. I know it is disappointing to not have an answer right away. But that tell's me how thoughtful this new Dr. is and that can be a good thing for you. Many years ago my Mother was dying and this Surgeon
    was called in. He told us he would have to think about trying surgery. It took about two weeks before he got back to us. He had decided to give it a go if that is what my Mom wanted. We talked it over and decided yes she would give it a shot. That was 25 years ago.A few years ago I went in with her to see her Dr and we where talking about the first time we met and he told me " If someone had asked if my Mom would be around 25 years later he would have said No way, My Mom even out lived that thoughtful skilled surgeon, that saved her life. So if you are still reading this hang in there, the Dr taking his time getting back to you show's me he is thoughtful and trying to see this problem from all sides.
    Peace be with you

  4. sending you hugs from Modiin. I can relate to a lot of what you feel. It hurts so much when your body won't let you be even a tenth of the person you know you're meant to be.

    And when other people don't realize that your body is keeping you from it, not your desires or inner strength or whatever.

    I can very much relate to living in a body that's betrayed me.

    Sending you spoons and comfort. Leah
    I wish I could offer more.

  5. Sounds just too hard and I wish it were not. I will say again that I’m truly hopeful for the Mayo Clinic. Really. I am so glad Robert is going with you. I’m sending prayers to you, with lots of love —Ariella

  6. Sending prayers and love to you Sarah. Let me know what's going on in July with your visit to America. So glad Robert is coming.

  7. Hi, Sarah. We read. We feel for you. We care. But we just don't know how to help. If you are in bed with a migraine - do you want visitors? You are strong and you can get thru this.

  8. I don't know that I have anything intelligent to say but I read all your updates and greatly emphathise with what it means to have a body that feels like it has betrayed you or at least metamorphosed in to something you do not understand or recognise. Pain induced sleep deprivation is a raw deal, don't underestimate the profound effect it can have on mood, perspective and ability to think. I pray that between Mayo and Afula doc someone will have a new insight and be able to help you. Wish we lived closer. Hazak veematz, hugs to you.

  9. I'm so sorry Sarah. I'm glad you've found doctors willing to at least listen and who are trying to help. The bent mesh, if accurate, would explain so much. I'm praying (literally) that you find the relief you so, so desperately deserve.