Tuesday, November 6, 2012

more about pain.

I had to leave the room and go look for somewhere to lie down. I hoped I could find somewhere that I could still hear the shiur (Torah class; in memory of my dear friend, RivkA, who passed away two years ago), but if I found a couch *anywhere*, I'd take it.

In the end I found a hard, small bench, and a stiff straw mat to put under me, so I could stretch out my painful legs. Not ideal, but I can no longer sit for any extended period of time (more than 10 or 15 minutes and I start to squirm).

I laid down, and the tears rolled down my cheek.
Not because I was missing my friend so much. I wished it was because of that.
Nope, I was feeling sorry for myself. Sorry for myself going through all this pain.

At the beginning of the memorial service, I saw some old friends. One friend is battling metastatic breast cancer. She is getting chemo and hormone treatments, basically for the rest of her life. She looked great, though, despite this. She has what our mutual friend died of. That is a heavy burden.

She was saying to me that she is often successful in putting her cancer on a back burner. I said "wow, that is amazing, how do you do it:?" She said that she just prefers not to think about it much. She just had twin grand daughters born, and it is so much better to think about them and not about cancer. She takes her chemo in pill form, and says she sometimes feels achey, but doing yoga really helps with that.

I told her that I am not on that level yet- I cannot put it on a back burner. She reads my blog, so she knows that all too well.

She said "of course not- you are in pain. I am not in pain. You never get to forget about it, your pain is a constant reminder".

I realized she was totally right. (and may she never suffer pain with her disease).

More recently, since the onslaught of pain last week from my other hip, I am in bed most of the time; as much as I can be. Since the other hip went out (last Thursday, I think), I have been suffering nerve pain on that thigh, as well. So, is the nerve pain from the hip joint problem? Part of it is, yes. Now I know that. But, the nerve pain on the left side is much worse- from the NF, the PVNS, all the surgeries.

I live with pain constantly.

I think I had a good week a short while back, but when a good friend was very celebratory about it, I knew in my mind that it was just a reprieve. I knew in my gut that it won't last. It never does. When I showed up at his house before Shabbat totally stoned on a huge quick-release of Fentanyl, and barely able to walk on my own legs, he was shocked to know that it wasn't a long-term; that it is so unpredictable. Yup.

So today, I am feeling sorry for myself. When, how will this situation ever change? In my deep dark thoughts, I think it will *never* change.

Why am I supposed to live a life of pain?
Sometimes, also in the deep, dark thoughts, I also wonder (selfishly) if it would be better just to not go through this; that to die would be better. Don't worry, I am not even close to that place, but I just need to say it like it is. It gets really dark in my world sometimes. Pain will do that. At least to me it does.


  1. Oh, Sarah, I am so sorry you are being swamped by pain, kind of like a permanent Sandy..... Take heart, you have lots of love and support coming your way. HUGS

  2. hang in there, your unbelievable strength blows me away! you are an inspiration, know that, even when its so painful. lots are counting on you to keep chugging.

  3. No one should have to endure what you are enduring. It is terribly upsetting, Sarah. We all love you, and wish we could do something to alleviate the pain.. We cry with you.

  4. Oy Sarah, so sorry it is so hard and keep writing, you absolutely have to write. Hugs to you and lots of tfillot!

  5. so sorry sara, i wish there was something one could do to ease the pain other than care and pray for relief of that pain.

  6. It's good that you are wriitng. It's good that you are sharing. It's okay to feel sorry for yourself, we all feel sorry for you so why shouldn't you? You've gotta be your best friend, and as you can see all your friends feel sorry that you are suffering. Just as we all rejoice when you have good news to share! May Hashem grant you a future in which you will have much rejoicing to share! May He relieve you of your pain so that you can have more energy and strength to add even more goodness than you already do with the amazing will you have in your determination to do and give so much good to your family and friends. Sending much love and continuing to pray.

    1. Darlene, that is such a beautiful note.
      Honestly everyone's notes to me have been so special. i can go on, keep writing and keep telling you all about it, because I know you all really care! Thank you, everyone. And to Darlene, thank you my dear, with all you are going through at this time, you are also reaching out to me. I find *that* heroic, too. :)
      Seems to be a theme here...

  7. Sarah, I have worried about if you get to that place given all you have gone through and expect to continue to go through. I'm glad you could say it, and also that you acknowledge that's not where you're at... Keep putting it out here for us to read, and we all love you and support you. You are valuable to so many people, not the least of which are your husband and children.