Tuesday, May 22, 2018

ready to give up.

It's great to hear from my friends when I don't write a blog for a while. People think one of two things when I don't write- either that I am doing so well and life is chugging along that I have no time to write (that's the easier option to choose when you don't actually know), or that things are pretty bad, and I can't write.

Unfortunately, for those who called and wrote to me, they found out that it is the second option. I am being openly honest with everyone I'm close to... things are very, very hard.

You all know the expression three steps forward, two steps back? Well it's usually meant to put a positive spin on things that seem to not be improving, but we don't see the incremental progress.
That's not the case here. Physically I have slipped back all three steps. And sometimes the pain is so bad that I feel it is borrowing from any future progress. I am in so much pain these days, it's pretty much exactly as if I hadn't done the treatments with Dr. Frischman. I'm sure, intellectually anyway, that there must be still good things that have stayed in the "better" state after more than three months of treatments (including the two week intensive living with them), but if you take out the intellect, my body does not feel any better. The doctor has been in the US for a few weeks, and I won't see him for close to another two weeks. The big question is... is it really helping?

Things have been just. so. hard.
Incredible pain, constantly, unless I lie down, and even then sometimes it can take hours before it totally goes away.

I have been crying every day, for the pain, for the hopeless feelings, for my anger, for everything going wrong. For my lost life of which I am living every day. For my lost identity, for the isolation of being in pain, for my hurting marriage, for my hurting kids. None of this is sustainable.

We have started seeing a very good counselor. I hope he can help us see through to what we used to have, and get it back. One of my kids is seeing him, too, and that seems positive for that child, too. We don't go together, though. The child has their special appointment time, and me & Robert have a different appointment. Maybe at some later point, if me & Robert can keep things together, we will do family counseling. Because you can't imagine how this has effected everyone. It just feels like a huge, failed recipe, even though one uses all the right ingredients.

And I can't separate my physical pain from my emotional pain, and how much would I be better able to handle life if I were well, or at least not suffering so much.

I am not well, in any sphere.

And if that's too hard for you to read, sorry. I can't water it down.
It's even harder than what these words say.

I am not discounting the definitively good things that happen in my life. Amazing friends, a few wonderful beach days, being the recipient of flowers after the recent holiday when the synagogue was decorated with flowers.... when the holiday (Shavu'ot) was over, someone dear from our community brought me some of the flowers. That was so special.
We have new, wonderfully comfortable electric beds that we got for our 20th year wedding anniversary, and many other areas I could show gratitude to God. I know I should show more gratitude in my blog. That's probably part of my problem, that gratitude runs thin when I'm in pain and feel hopeless that anyone will ever know what it is or how to help me.
Pain... it's a really, really awful thing to live with. This level of pain, I could never have imagined that this could happen, with no clear promise in sight of it ever going away.

I played horn one day last week. It felt like my long lost soul again in my arms when I held my horn, and did some minor repairs so I could play again. I played a lot that day. But it's not sustainable, it hurt too much to continue. It hurts to play. I want nothing more than to be able to play again. If I could have some of ME back, maybe I could be in relationships better, you know?
But I can't see through the dense fog of constant pain to maintain any sort of real hope. In anything.

I'll be in the US in August, I am looking into options for diagnosticians/internists there.
Life is hell. I don't know how any of this is going to find resolution.


  1. sending you love. Lots and lots of love. and prayers. :( I'm so sorry. I really hope things will improve soon.

  2. I'm listening. I hope it helps you to know that people are hearing you. I pray for you. I wish I could take your pain away. I pray that the answers you are looking for are on their way to you.

  3. Thank you for sharing your journey with us. Please know that even during these dark times, you teach us by being you. I pray this pain will go away.

  4. Sending hugs and prayers, Sare.

    Love, Devorah

  5. Every day another prayer from Divine Providence goes up to shamayim on your behalf. Hashem loves you.

  6. Sarah - thank you for your honesty and openness. I think of you often. Its amazing what we don't know when we are young.