Friday, April 21, 2017

Life, death, and no-man's land

Often it feels like I'm gliding through no man's land. Well, not gliding, plodding is more like it. That's why I haven't written in so long. It's hard to do anything in no man's land. It's even hard to explain. There have been some wonderful times over the holidays, and with the kids... nothing is *that* wrong. Except that I don't feel well, hardly ever. Most recently I've been overcome with a tremendous fatigue, heavier than any I've ever known. Still I plod away, though. Well, not always. After the seder for Passover, the day following, I could not get out of bed. I did not make it to our family holiday lunch downstairs. Or the day after that. The kids were all off from school, and my brother Peter came to visit. I pushed when I could, rested when I had to. It's the kind of fatigue that my head was spinning and I couldn't string sentences together... couldn't get my body to agree to be vertical.

Intuitively, I feel something is Really Wrong inside me. Honestly, between you & me (and the internet) I have an almost constant foreboding feeling that I'm going to die an early death (what is an early death, anyway? We aren't the ones who decide times, God is). I never felt this before I had NF, (honestly I felt invincible before I had NF) but my psyche has not been able to return to not feeling this way. I wonder if it's because my sense of mortality was shaken to the core when I got so close to that line between life and death? I've been talking about it a bit with my psychologist... this is a feeling that has intensified in a big way since my friend Sabrina's passing in December. I don't know what's real and what is psychological with my body's symptoms. In the meantime, I am going through with a lot of tests to see if there is some see-able imbalance we can right. Blood tests, x-rays, CT scans, MRA, MRI all in the near future. I've had chest pains for months, but nothing frightening. Could be anxiety. I try to do guided imagery at bed time- a difficult time for me because despite the exhaustion and sleeping pills, I have a very hard time falling asleep, and staying asleep.

Recent doc visits:

Neurologist visit= migraines in check, but my hands are shaking a lot from the medicine, so we lowered the medicine. That was three weeks ago and I am still shaking. As scary as lowering it may be, side effects are not long-term livable. I'm going to lower it more soon on my own volition.

Dermatologist= gave me two different creams for apparently two different types of rashes on my grafts and thereabouts, and neither of the creams are working well. Seems like the grafts are never happy.

Enough of that.

My big news is that I am playing horn again, fairly consistently. Can you believe it? Do you know that almost ten years have passed since I had NF and stopped playing?
There is a new "start-up" orchestra about a 50-minute drive from me, and a horn-player friend told me about it and suggested maybe it'd be a good place for me to play, not for money, without pressure. She's coming, too, so the two of us are the horn section. The first week we played Shubert's "Unfinished" symphony, and last night we played Beethoven's 6th symphony ("Pastorale"), one of my favorites. I really enjoyed it, even though the level of the orchestra is very amateur. It's what I need for now... I am also amateur at this point! I don't know if it will lead to me being able to get my own playing level up and doing more playing with better orchestras, but for not I don't have to worry about that. I try to practice every day, or as much as I can, when I have energy. That is a step forward... it's movement... it's development. It's *life*.

So there you are, the philosophy of life and death, by Sarah Kashin Klein.
Thanks for being with me, we hope you have a good flight.
Shabbat Shalom!

Dov (18), Shifra (14) and Wazi (11, presently with a broken foot)
at a picnic we had in Modi'in together with our other Klein family here in Israel
(Robert's brother, SIL and one of their kids)
over Passover. It was lovely!


  1. sarah. i can relate always despite not being as in severe pain or critical condition. i think i have commented the same before. i dont know what my writing this does--i hope it doesnt hurt for me to say that-- but having just visited a friend with MG and other stuff in the hospital here and the hell she is going through with staff that wont listen and made her sicker! sepsis! she TOLD them it was going to happen if they didnt ______. anyway.... when we are sick it's so hard to see the light--other than the impending forever light-- and i also feel quite on the regular that i might not make it another 10 years. My body is telling me constantly its tired and beat down and being chemically dissolved. my brain hurts from the insanity that i cannot get top notch care b.c trillions of tax dollars pay for so much garbage, people fleecing the system..and then to find a doctor who cares and listens. it can take a lifetime. or many. i have you in mind and wish you strength and healing and NO pain. i know it might fall on GDs sometimes deaf ears but at some point he has to turn towards us, in life, or beyond. i also know despite all the challenges, i'd rather be HOME, than here.

  2. I love you and hug you in my heart always Sarah dear! <3

  3. I'm glad you're going for medical tests. Best to rule things out and work with the information you've gained. That you are playing your instrument again, despite the challenges facing you, is so, so wonderful.

  4. I to am an nf survivor,and reading your blog was as though I had written it myself.It would be nice to communicate with someone who knows what I'm going through,my email address is