Tuesday, October 9, 2012

Stories from two continents

I just wrote an entire post with pictures and pouring out my heart.... and it got deleted by mistake. I'm not going to agonize about it, though. There is a reason for everything.

I hit the ground running, as it were. I felt great when I returned from the US. I was energized and happy, and in very good spirits after spending time with my parents. This trip was so good for us on so many levels. I am grateful to Gd for giving us (my parent's and I) another chance. After a lifetime of strife between us, it's behind us. Illness has a way of weeding out what is a waste of precious time and emotions, and making people better people. I've seen it, I've read about it, I live it myself, and now I see it in my mother. Illness has changed her heart, just like it did mine. We are fortunate beyond measure to have this while we are both still living and understanding.

I used to climb along those rocks on the edge of the shore.
the ever present sail boats

me, the sand, the water, the perfect clouds.
The ever present colorful canoes

This is where I grew up, 
where the air and the sun nourished my thoughts.

Jet lag kind of came and went, but I was surprisingly not suffering from much pain. It felt like a miracle had happened; both regarding the visit, and my return to Israel.

I did stuff around the house... lots of stuff. There was so much to be done. I know you are going to say "oh, here we go, she overdid it, and now she's crashing". Maybe. It's just that when I am feeling well, I seize the moment- "carpe diem" and all that. I use the days I feel good. What is the point if I don't?

Point is, someday it will all come to an end. Nobody ever can know when that will be. For me, sometimes it already feels like the end when I am bogged down by pain, day after day. It erodes the very core, my reason to be. *Nothing* is good in my field of vision when pain is taking the driver's seat.

So, I take medicines. Hard medicines. Lots of medicines. And I hate them. There are side effects to these medicines. Without them, though, I am in agony. With them:

I slept away the better part of 36 hours. Can you imagine being ruled by medicines to such a degree that it takes you out of social gatherings and makes you miss beautiful holidays?

I had been up for a bit on Shabbat evening, enjoying friends at a lovely meal in our succah. Then I was hit with pain. Nerve pain. So, I did what I projected Dr. Z would've done, raised the dosage of the nerve pain med. This is the new one which I went on, just before I went to America. It wasn't covering the pain yet for me. So, I raised the dose.

It put me completely out, and worse than that, allowed for a dark depression to swoop in and take me away, leaving a sleeping shell in it's wake. It says it may have that effect in the package insert. All these medicines say that stuff, though. Seems like with this one, it isn't an empty threat. I was distraught all day today- crying uncontrollably. I was able to get myself out of bed, with a herculean effort. I dressed in a nice outfit for the holiday, and got myself to shul. When I got there, though, I had to turn right back around. Being around people was too hard, I was teetering on the verge of tears, and sometimes the balance was thrown and I fell into the grip of sadness. Why? Who knows. I turned around and headed home. Nothing else I could do. It won.

I took away that new dose and brought it back to where it was, when things were better in control, but it wasn't effective on the nerve pain. I have been taking Lyrica for the break-through pain, which is far from ideal. I need a medicine that covers the pain consistently 24 hours, because waiting for the SOS to take a back-up pill isn't a good way to live. Too many mind games.

I hate taking medicines and I want my life back.

I still have a few surgeries in front of me, you know. I need to get an MRI and take it to the orthopedic oncologist in Ichilov hospital. My left hip which was fixed back in Feb is slipping out of the socket again. I had a slight respite for four months or so, then it slipped out of the socket again. The right hip is doing the same thing.

My hands are still shaky. It may be from the effects of the gabapentin, which was given to me to take for nerve pain relief. The problem was that those tremors started about two months after starting treatment with the gabapentin, and we learned that it is not a suitable medicine to give to someone with CKD (chronic kidney disease). I went off of it, but the tremors have (so far) remained.

Do you see what these meds are doing to me?
Will it ever end?

This is IT. This is my life. Each day, being ruled by the pain and the meds, this is IT.
Makes me just not want to subscribe to It.

I will be starting to do yoga, hopefully, at the recommendation from this woman in NY during Yom Kippur. She told me that she was able to get off the meds (including Fentanyl- the narcotic I take by patches) partly by doing yoga- lots. And "energy work", using the body's own energy to heal itself. I am hoping to get these things going.

I still can't believe the twist my life took when I got NF. It is... it is... unbelievable.

I feel I have aged forty years in the span of these past five.

It is a constant struggle. Perhaps Hashem wants us to work on this struggle, to build up *from* this struggle.

Received an email today:
"Living a life that matters doesn't happen by accident. It is not a matter of circumstance, but of choice".

We are to take these circumstances and constantly make choices. 
Choose life.


  1. keeping you in our tefillot daily, and hoping the yoga will ease some of the symptoms. you have given us a tremendous amount of chizzuk,by sharing your daily struggle with this illness. may you have a complete refua in this new year! rochel.

  2. Thank you so kindly, Rochel. I love hearing from you, and feeling the chizuk you pass forward to me!
    May Hashem grant refuah sleima to all Am Yisrael.

  3. I would love to hear how the yoga helps you, Sarah. I pray that it does and that you get relief.

    You are never far from my thoughts and my prayers. I hate to see your suffering and your struggles, and am inspired and encouraged by your faith, your patience and your grace in such awful cifcumstances. God grant you strength, my dear. I hope you know you much you are loved.

  4. Mary, Margaret, I do feel loved, so much. Letters like yours help me with that, too. Thanks, darling.
    May Gd also protect you from the illness demons with your newest trial. I am waiting on tinder hooks for the results.
    Love & hugs to you!