Monday, June 26, 2017

A non-soothing prose

Quiet and dark, throwing up in the throes of migraines.
Three days and three nights each... twice, two weeks apart.
No medicines to control them, ride it out.
Ride it out, ride it out.
Feeling that it will Never End.
Quiet and dark, but not peaceful.

A life of discomfort and pain.
The occasional day of fevers and flu-like symptoms.
No answers, ride it out.
Sleep on it, either it will get better or worse, but avoid going to the doctor.
Except sleep... it's as elusive as a day without pain. It just doesn't happen.

Did I say avoid going to doctors?
In the meantime I am driving all over the country to find help.
Yes, I do see doctors, many of them.
Too many. It's exhausting.
I'm searching for relief.

Natural therapies are slow and intangible at this stage.
But I am doing them. Homeopathy.. so far isn't helping.
It's going to take a while, I am patient.
The promise is that my body will learn how to heal itself.
But there is so much damage.
Osteopathy is infrequent, the practitioner of vacation recently.(but I will go to Jerusalem and see him on Wednesday)

Vocal rehabilitation every Sunday morning, also slow, no noticeable progress.
Lots of traveling, lots of hoping.

I am either at a doctor,
or therapist of some sort,
or at home suffering, or exhausted.

Living with pain alters some part of the brain, I'm quite sure.
I take no pain medicines, my body having rejected many of them over these 10 years.
Even when I'm not in pain (I can be in pain but not suffering)
I am down... depressed.
I don't have the answers why, but as I said,
Living with pain alters some part of the brain.

You see me, I look fine, healthy, happy to see you.
That's also true.
Short lived, though.

My oldest son graduated from high school, got his drivers licence.
My other three kids, finished for the year.
I need my quiet, it is challenged now.
More clothes to wash, kitchen with constant crumbs, sandwich toaster always out, tomato sauce splattered all over the stove.
Rice burned at the bottom of my favorite pot.
I want to scream, but I lost my voice.
I lost my scream voice.
I quietly state my standards.

The kids are older, more independent, but in transition.
I'm *that* mother that doesn't control their cell phone/computer usage enough.
Daughter texts for too many hours.
Sons play games endlessly.
I don't have the strength to entertain them otherwise, or to stand up to opposition.

This is life.
This is life after NF... the week that changed EVERYTHING.
Every cell known and unknown to man was changed in and around my life.
I just want to reclaim those cells. I keep trying.
But they are scattered in hospital rooms and hallways.



  1. Sorry, Sarah :-( I had only a relatively short-term experience with chronic pain, but I could tell it affected me - mentally, physically, emotionally. I can only imagine what it is doing to you, living with it long term. I hope you find answers and start reclaiming your cells!

  2. you know i read your posts and wince with my own understanding. especially the pain-changed-brain. i feel it. i dont have kids or obligation to anyone but my dog. i have sought the possibilities of my own euthinasia(sp?) but alas no state allows unless terminal. i am told im a crybaby. im told get over it. im told people are worse off than you. im told you dont seem so bad. im told i feel sorry for myself. i tell them all in my own head to go the fuck away.(pardon the lang.) i usually dont know what to make of life on the bad days. the better days i push through with 90 year old bones and medications that are melting my body and brain and no one knows these demons i fight. how did it come to this? how can i have hope? how can i avoid the electric shut off notice? the rent due in a few days? my talent seemingly wasted..... searching for an end to the pain--or maybe meaning in it-- while surviving. almost. but yearning to thrive...... i wish you refuah shelamah of course. and end to the migraines and pain and driving across the nation with NO destination, rather than docs offices....the ones we go to and would rather be anywhere else....anywhere but there....

  3. I'm davening for a speedy relief for you. I know that I can't appreciate the magnitude of the ordeal you've been through along with its challenges. It's amazing how much you've accomplished despite it all.