Wednesday, April 23, 2014

The seventh year anniversary: disrobing the pain quotient.

Night one of cutting out a small dose of one of my meds. This is the medicine for nerve pain.

I have decided to try it, and we have to communally pray together that my body, my nerves, can take life with less of this medicine. I usually take one only at nights, having cut my morning dose out- by my own initiative- about 6 months ago. Now, I have decided to take it every other night, instead of every night. I'll do that for a week and see what my leg and surrounding areas think of it. I have worked out a logical schedule to keep track of this change, and implemented it tonight. If it goes well, I will subtract another night, after a week to ten days.

How is the level of nerve pain? Is it better now after these seven years? Or, is the damage waiting to surface, as soon as this drug uncovers it's blanket which dampens the echo of my severed nerves? The pain was so incredibly deep, untouchable, before I got onto this medicine. I'd get sharp shooting pains up and down my upper leg, intense internal spasms which were completely unreachable by my hand wanting to soothe it. The other feeling I describe as a "chiseling" sharp feeling poking all day and night.

The pain did not increase after my body got used to the morning dose decrease six months ago.

I am going for more. I want to see how little medicine I can be on and still not suffer. It has been a long time on these medicines, and I have talked about it for a long time now. I feel brave somehow; I have no idea why now is the time, but I intuitively know that it is time, slowly, delicately, attentively, to experiment.

If this goes well, after a month or so, I plan to continue, next time with lowering the narcotic, the Fentanyl patches. That is scarier because of the level and intensity of my reaction to withdrawal (if you remember about three weeks ago- hallucinations, brain zaps every few seconds, low fever, vomiting, the shakes.... not pretty.) But, even with that, I am willing to lower the dose again. My body needs to be freer, cleaner.

There is the surgery coming up next month... I'll have to play that by ear. I don't want to sacrifice long term benefits of weaning from a medicine for the short-term recovery pain. Maybe I'll be able to use something less invasive to help the recovery pain.

The wild card here is of course, not knowing how much of my daily pain will surface with this experimentation. That is the scariest part for me. But I can do it. And I can reverse it if need be.

The side effects are reaching intolerable states, on many fronts.
I want to decrease my medicines to the lowest common denominator, so to speak (fifth grade math?). Downsize. Simplify. Drink Bourbon instead. {just kidding, folks!}

There is incredible power in communal prayer. Like team playing on the basketball court: Lets throw our right hands into a circle, one hand on top of another, and win this round. Pray with me that I can recover my non-medicated body without too much suffering.

What is too much suffering, anyway? If we live through it, than it wasn't too much, right? It is just enough, simply by virtue of the fact of living it. There is a difference between "pain" and "suffering". One of them hurts, possibly a lot, but the other- the "suffering"- that is what happens when pain has no support or loving people holding you up. I teach that concept to my pregnant mothers about labor, and how to differentiate pain from suffering. Pain? Yes, there will be pain in childbirth. No sugar-coating that. But suffering? Not with the proper support and love. That's where doulas come in. :)

But this isn't childbirth.
Well, maybe there can be a corollary, in a way...? I get my less-medicated body as a gift at the end. And, just like having a child, I then have a lifetime of living up to that gift, and taking precious care of it.

How appropriate to be doing this now... with my seventh year re-birth coming up. May 6th is when I woke up from the coma. I have such vivid memories of that day. A huge memory is that of communal prayer.

It went like this: I remember starting to feel lighter, awareness slowly seeping into my numb body. I couldn't move anything at all. I tried so hard to grab onto the feeling of awareness, and it was just out of reach. Intuitively I began directing all my energy, ordering my brain to make my eyes open. After a long time of trying to hold onto awareness, trying to open my eyes, the nurse pointed out to Robert that I was coming around. He was standing by my side, getting ready to say the T'hillim (Psalms of David) that was pre-organized. Everyone who connected with the "Caring bridge" website about my early progress knew the set time- in different hemispheres- to begin saying the pre-organized T'hillim, the same psalms, in any language, at the same time. Robert saw me, took my hand, wept, and told me immediately that in a few minutes everyone is going to pray for me all together from around the world. I saw him start to sway with prayer. I tried so hard to stay with the world, but I lost the battle and slipped into the heavy darkness again. I woke up stronger the next time.

There it is, the power of communal prayer. Let's do it. 

Let's pray for revealed healing.

Slowly, gingerly, I hope to lower the pain medicines in my body. 

I pray, with your support, that there has been enough healing in these seven years that I won't be inviting the pain back into my life.

Seven years. Extremely significant in so many ways. Jewish ways. I'll get into that in another blog article about the upcoming anniversary.


Meanwhile, enjoy a few pictures of our last day of the two-week vacation today- going out with a bang! We were on a jeep tour of a huge crater- inside, bumping and climbing around the bottom of it. (I won't detail what that jeep careening and bouncing around for two hours did to Gapey, but suffice it to say that it hurt, and I had to hold it together with a strong palm on it most of the time.)

We learned today that it isn't actually a "crater" in it's real archaeological composition, but there seems to be no English word that equals what it really is: a Machtesh. (don't ask me to phoneticize that for you- you need the back-of-the-throat guttural "ch" sound to pronounce it)

I got some great pics, but I'll just put up a few of the best here...

If I move my arms away, it'll all fall on me. That's why I am smiling.

Klein clan cratering.

My beauty, Shifra... the Indian-style dot on her forehead is from a making a certain rock wet, and it gives off this color paint. The boys put war stripes on their cheeks.

Dov thinking deep thoughts, I'm quite sure.
I put those boulders there for the picture.

Soooo cool!! This is the inside of a rock. There were zillions of this type of rock in one certain part of the crater. 

Ya'akov has been climbing like this since he was two. I just pray and take pictures.


  1. Sarah, I hope that this is successful for you!

    1. that makes two of us.... and probably a few others, as well. :)
      Thanks, dear cousin.

  2. Sounds and looks like you all had a great day. With your positive attitude, I'm sure you will be successful in adjusting your meds.

  3. good luck, I pray it should go smoothly for you!

  4. Looks like a great success (despite being banged up?) Beautiful photos. Wishing you strength and lick with the meds - bon courage.

  5. I know it was filled with pain, but "happy anniversary"... You're bravery is inspiring.

    1. Thank you, Eli. That is a very thoughtful thing to say. I'll take that with me in the trenches. :)

  6. Looks like you all had a lot of fun. You look so happy. Two tiyulim in one week!

    1. well, it was Pesach week, not just any ol' week. Gotta get out and create family togetherness. These times are getting fewer and further between, you know?

  7. You are in my prayers.

    1. Thank you!
      So far so good. I don't think my body has figured out yet that I have deprived it of this medicine for a day.... we'll see how long it will take. Maybe it will be such a smooth transition that I'll never feel it!

      Good night, and thanks again. :)

  8. What a monumental decision Sarah! Best of luck on the journey.

    1. thanks Kristen! This particular medicine is not narcotic, so I hope that lowering the dosage in the small increments I am doing it will not wreak havok in my body. Day one passed, so far so good.... not sure my body has figured it out yet.

  9. great pictures, Sare! I love the boulders that you moved for the picture. :-)
    dev from nj

  10. It was actually my karate chopping talent that did that, but I didn't want to brag.