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Sunday, December 14, 2014

Who By Fire

I've been bad about writing for a long time.   I want to post positive, upbeat things to encourage those with the challenge of chronic, intractable pain that cannot be controlled.   I've got a surgery scheduled for the end of January and I'm terrified it won't make any difference.   NF is ruthless, unforgiving and beyond challenging.   I struggle constantly to make sense of it; whether or not there is a G-d or if everything is just random good or bad luck.   Anyway, I've been working on this stream of consciousness poem (it was stream of consciousness but I tweaked it) below:

The day will come when lights are low and all I’m breathing in will go
Then to this world I’ll bid goodbye and hope you know I did, I tried
I fought like mad against the pain that seared right through, all grip all gain
I’ve often left it through my mind in search of comfort hard to find
Precious pain-free moments heaven, pain dips down from 10 to 7
Music, oils and meditation, seeking comfort, speculation
Surgery is my last hope to find relief whatever scope
If that bid fails no option’s left, I do not meet the standards set
for helping those in mortal pain but no “by when” date, what a shame
A life of pain with no conclusions, no longer clutching doped delusions
of hope that pain will end in time, to have a life out of this bind
I know they have to draw the line on who to help but what a crime
Left alone to make a choice, take the action, use my voice
But “what if’s” haunt as much as pain, the list is long as is the strain
of questioning why I’m here, is there a G-d and is He near?
Or was my birth and shattered gene, just a crapshoot, not foreseen?
If that’s the case why wait around just pack my bags and leave this town
But if there is some truth to learn, then patiently I’ll wait my turn?
and live in torturous, intractable pain, it’s hard to believe this was ordained
One thing is true, for this I pray, to not return to Earth one day
And when it’s time and lights are low, all my breathing in will go

Thursday, November 27, 2014


I have been going through something lately.  What it is, I do not know but it’s taking me places I’ve not been when lucid, or even when I’m journeying  or dreaming.   It’s like being surrounded with a quiet acceptance.  Maybe because the pain has been so outrageous, so uncontrollable that there is nothing left to do but surrender.  Maybe it’s the first step to the next level.   The level with courage.  Courage to honor my wishes and be at peace with whatever decisions I make regarding my health.  The upcoming surgery on my leg feels hopeful.  But if provides little or no relief (plus my other leg is just as bad though the tumors haven’t “appeared” yet) that leaves me with the same two options I have now.  Do I stay or do I go?   I don’t take that choice lightly.  But nothing except the endless pain that has kept me housebound for too many years to think about seems unimaginable.  And yet, there are many things for which I am grateful and thankful for.  That still isn’t lost on me.  So can’t I have both?  Thankful for the good things and unable to withstand the pain much longer.   I could still leave with joy, it need not be despair.  If I chose to be grateful and happy for all I have, I can leave with a smile.

I am not near that landmark.   Just thinking it.

And I’m in quite a bit of “pain right now.  It’s Thanksgiving, and I do give thanks for everything that I have; I have a roof over my head, food, medicine, family and friends.  My NF friends are very important to me. 

And I am going to be a part of an NF project that is supposed to teach me skills on coping.  I already to a lot, but I’m interested in hearing what they have to offer, ready to offer what I have to them.  If they are interested. 

My niece is coming over tomorrow with leftover turkey and pie, etc.  That will be nice.  Today, I’m alone with my thoughts, my Netflix, the horrible news (which I’m trying to avoid) and whatever else I can find to help me cope.  In the meantime, my sister got me hooked on “The Walking Dead” of all things.  Aside from the zombie scenes, it’s really interesting in terms of coping…thankfully, I don’t have to endure what the characters are enduring LOL.  Kind of “Lord of the Flies” like.  

Saturday, November 22, 2014

My Gosh

My gosh it’s been a long time since I posted.   I think I’m feeling sad that I haven’t done enough to promote my blog so others with pain related issues will see it.  Not that I’m a great writer; just so they won’t feel so alone, like I do much of the time.

I’ve had a UTI recently and it hasn’t cleared up so my doc was supposed to call in a script yesterday but the pharmacy said they never got it and now I’m waiting for someone on call to call back but they won’t fix it on a weekend.  I’m going to call them back (they said give it 30 minutes and It’s already more than that) and tell them if I have a bladder/kidney related emergency this weekend because I didn’t get the script, they’ll see me coming LOL.   Actually, there were crystals in my urine.  I know it’s bad for a cat, but my doc said it wasn’t “necessarily” bad for me (I didn’t mention cats).  But it could be a kidney thing.

So. Surgery.  It is scheduled for the end of January and I got all the questions I had answered and I have a pre op date but I’m still a little bit on the fence.  Not as much as before.  The pain has been so outrageous I just want to hang on to the olive branch the doc is offering….even a 20% decrease in the pain (20 to 80 is the averages) would be welcomed.  But I can feel them growing in my other leg too and the pain is getting bad there.  We shall see.

Other than that, I am spent.  I had an outrageous dream the other night.  In it, I was sitting behind the wheel of a car at a stop sign.   Suddenly, the passenger door opened and some strange man I’d never seen came in with a gun and held it to my head.  And in the dream, I had the clear thought “This is what you said you wanted.  This is what it looks like” (Death).  But instead, I took his face in my hands, looked him in the eye, and said “I’m sorry you had such a hard life”  He looked at me, exited the car, and as I sighed with relief he shot himself in the head.  The last thing I recall were police and paramedics everywhere.  Then I woke up.  Reminded me of that show “Medium”

The doc just called.  But I have no one to pick it up and they don’t deliver on the weekend.  Maybe they’ll make an exception since I’m so uncomfortable.

Thursday, October 30, 2014


I have written a bit about how pain and suffering don't necessarily go hand in hand.  In fact, they are two different things all together in my experience.   This is an interesting article that although doesn't specifically mention pain and suffering, does show the mind/body connection.  Great read.  And I don't minimize the pain...far from it.  But I also practice ways to make it less painful, and if I really pay attention to my intention, it works.  The drumming, the meditation, the acupuncture, essential oils (but most of all the shamanic journeying by listening to drumming)....anything to get me out of my head!!

Saturday, October 25, 2014


That book I’ve been reading “Beyond the Ashes” continues to amaze.  One of the things the author discusses is “Survival through one’s Descendants” and how (in its teachings) if you don’t have a descendant, you die both literally and spiritually.  This is considered a “bad” thing, a liking to spiritual suicide.   But I chose not to have kids because of my NF, and although I know it’s a book on spirituality and should not be taken literally, it got a smile out of me.  I do not want to come back, as I’ve stated again and again.  And again.  LOL.  Each to his own, I guess.

Anyway, it occurred to me that perhaps the reason I am experiencing such spikes in pain and such feelings of ending my life or just praying that it be so, that those feelings are profoundly ungrateful for the life that I DO have.  And there is plenty to be grateful for.  So I’m working on that.  All the time.  And the amazing thing?  The MINUTE that thought popped into my head, the pain seemed to drain a bit.  I actually felt my legs letting go of the pain.  I must keep working at it, of course, but it’s just one more tool in my toolbox of ways to survive.  An attitude of gratitude is hard to maintain sometimes, especially when the pain is off the flow chart.

At any rate, I am thankful for the following (no particular order; just as they pop in my head) and whether or not I still have/can do them:

A roof over my head, food in my belly (when I eat), access to medication, friends, family, heat in the winter, disability benefits, people to help me during the week, Internet access, books from the library, my blog, people I’ve met online who also deal with pain, people online who have NF, having had my dad for 61 years (my lifetime…he lived to 90) having had the chance to mend my relationship with him years ago, my helpers on the other side who have been surrounding me with a lot of love since my dad died (and who are always there when I call for them), having access to a healer/acupuncturist who has made my life a lot easier, a wonderful therapist, a beautiful view out my window and balcony, hummingbirds who I watch enjoy the sugar water I make for them,  I’m thankful for the stars in the sky (even though I no longer see them…I know they are there), the sun, the plants and animals (which I can no longer have, but love dearly), dark chocolate, books, books and more books, a good spooky movie, a good comedy, all the places I was able to visit before my illness took over, the wild times I had back then, the men I loved, the ones who may have even loved me, the wonderful people who have stood by me all this time, my ears, my ears, my legs that can still walk in spite of the pain and the numbness, hands and fingers which still work, though not as well but hey, they work, ginger cookies, shortbread cookie with chocolate on top, funny stories told by friends around good food, same for family, looking up and suddenly seen something surprising….like soap bubbles floating up from somewhere secret, my laptop which gives me access to the world, smells I can still smell and enjoy, sights I see through photographs, old photographs of my extended family especially in black and white, hand-holding, back washing, swing-sets and monkey bars, ice-cream, sour candy, jig-saw puzzles, Halloween, prayers of thanks, any/all prayers, faith, emails and surprise visits from family and friends, essential oils, ordering things online so I don’t have to go anywhere to get it, pharmacy delivery (new!!!),  snowcapped mountains, thunderstorms, rainbows, honey crisp apples, an appetite, flying dreams (and others), singing to myself, songs from the 50’s and 60’s, my mother singing 50’s songs to me when I was a kid, eyelash kisses, dark chocolate ice cream bars, National Geographic photos, catching the anger before the outburst (and stopping it), leftovers, ripe pomegranates, cupcakes with buttercream frosting,  cherry lollipops, cats and dogs, eaglets and eagles, actually, all animals on the planet, all the wonders of the world (including reproduction of all species), rare days of being pain-free, videos of animals, hearing about the travel of friends, getting in touch with my higher self and being able to reduce my own pain, my spirit guides, G-d, G-d and G-d….my list will continue, though not here.   I urge you to make your own!

Tuesday, October 21, 2014


I saw the surgeon I’ve been waiting to see today.  He was running two hours behind but I was lying in the exam room so it wasn’t that bad….usual pain levels.  And he asked pain questions no one has ever asked me.  Like do I curl up in a ball, do I cry, etc.   I thought those were important questions.  He also has had many NF patients and I saw two in the waiting room so I know that’s accurate.  And a nurse and another doc talked to me as well, assuring me he is good and knows about NF.  Whew.

So he felt the tumors on my left leg, left side of my neck and left wrist.  He said he can get them all out (felt them and said they were near the surface) but he’s a busy guy and it will be a few months. It will be about a two and a half hour surgery.  He said recovery varies, and my sister was with me taking notes and asking questions, worried that I live alone and how hard would it be? Gotta love her!!!

I have mixed feelings….I want to do it, absolutely, but I am worried about recovery as well.  Stay tuned.

Monday, October 20, 2014


I still feel you all around me; counseling, loving, sharing sage wisdom learned in the World to Come.  I am in increased pain and my left ear has started to bother me relentlessly.  Before, it would come and go.  Now it has planted roots, like the rest of the tumors.  I feel helpless to the invasion and when I let it, I worry about that which is not in my control. But what I seldom feel anymore is fear.  I am taken at how much at peace I feel through the pain.  Am I truly surrendering?  And is surrendering the same as giving up?  Throwing in the towel, as it were?

More and more: memories are starting to surface.  Things done several years ago; like being able to go out for a bite to eat with family, or memories from many years ago, with friend whom I don’t even know are a live anymore.  They come in flashes with a sign that reads “don’t forget this or that”   I won’t. I promise.  I miss it.  I miss it all.  I still wonder where old loves turned up.  Like Michael Neal, whom I never managed to find.  But his name is common.  And I doubt I ever crossed his mind in the 30 (gasp) years since I saw him leave town with a pregnant girlfriend he neglected to tell he had.  We were young.  He was truly confused.  And much to my chagrin, I actually liked Joy.   He knew I was sick and he was perhaps the ONLY man I had met where it didn’t seem to matter to him.  And poof, he was gone.

What would I have done differently if I could have a do over?  I’d be braver. I’d push through the learning disabilities, the physical challenges and romantic shutdown.  I do believe I reincarnated too damn soon after the Holocaust; and yes, I’ve had a spontaneous past life experience of dying the gas chamber.  Completely spontaneous; no recent thoughts of the Holocaust.  And two other past life experiences not related to it.   But those were much earlier. This was the forties, early fifties.  That world always had a draw on me.

Oh, and I’m working hard on appreciation.   I’m keeping a list of things that I’m grateful for.  It’s long, and continuing to grow.  I seem to be able to tolerate the pain better when doing this.  Huh.

Sunday, October 12, 2014


I’ve had at least three spontaneous experiences which may or may not have been “past life” memories.  I’ve written about them on this blog.  So every once in a while I pick up a book about the subject and try to tackle it again.  Right now I’m reading “Beyond the Ashes” which is an accounting (in part) about people, mostly non-Jewish, who have had unexplainable memories of the Holocaust.  Not the kind of things everyone knows about from books and movies, but very specific and verifiable experiences which are hard to explain.  I myself had one that scared the pants off of me but sealed it away for years before I talked about it.

At any rate, I bring it up because I have been tackling the idea that we keep incarnating the same kind of problems over and over again (especially if we don’t resolve them).  One thought about the Holocaust reincarnates is that they came back too soon (a therapist told me that years ago and it felt accurate), before the soul had a chance to let go of what they just went through in their most recent life; especially because the life was one of such horrific challenge.  The world today ALMOST pales the Holocaust; and what was done to people (not just Jews; Gypsy’s, homosexuals, etc.) in the way of torture is beyond imagining.
So I’m thinking, if I was in fact killed in the Holocaust, I sure feel like I came back way,, way too fast (which is discussed in the book) and that that might account (in part) for my anger of being here now and my dread of possibly having to come back again after my death this time,   And then there’s the fear of how much longer I end up living in pain and fear of how bad it’s going to get before I’m done.  Whew.  Take a pill, right?  And what if I can’t hack it anymore?  Will I be punished and forced to do a do over? 

Anyway, I started to think I brought NF (or my soul chose it) in with me because I haven’t reconciled all the pain and torture I endured.   Crazy?  Maybe.   But we don’t know what we don’t know; we just cling to our ideology because we are so desperate to make sense of the senseless.  I have a lot of time to ponder these questions.  They aren’t meant to be morose.  I just like to untangle the knots in life’s tapestry.  It helps.

Tuesday, September 30, 2014

What You Resist, Persists

Forgive the anger, frustration and sadness of this one, please.  I thought long and hard about actually posting it, but in the end (and again) I want others with pain issues to remember they are not alone with these feelings.  I am here, and so are many others.  I didn’t mean for that to sound like a know-it-all.  In fact, I feel quite the opposite.

A quick warning for those of you on an anti-depressant:  I was taking less than prescribed because it increased my blood pressure.  But my BP is low anyway.  I realized this morning that not taking what they prescribed probably has a lot to do with my recent feelings and inability to cope well with the loss of my dad on top of my pain.   So I am now on the right amount.  We shall see!

I’m having a hard time letting go anger about my pain, about my life’s limitations and about all I’ve lost.  I feel shame at not being stronger, less complaining, less angry.  I try, but between the physical pain and my GI problems, I no longer have the energy to fight it the way I have been.  Fighting, resisting, doing everything but accepting it.  And I know that my solution to my problems, the fighting, is the problem.  I tell myself to surrender, but the pain is so intense sometimes surrendering is the last thing that comes to mind, even with reminders taped to my walls which read simply “Surrender”.  Surrender to the pain!?  Not a chance!  I want to fight it…I want to win.  But I lose every time I try and fight it.  Emotionally, physically, spiritually.  I’m on some obscene carousal ride for which I can’t exit.  All the horses and seats are scary, dark twisted images. I know there is a lesson in this.

I do believe all the people I loved dearly who are departed watch over me.  I believe that praying for death isn’t the answer.  And I know that’s not what surrenders means.  The conundrum, is that when it gets this bad, I’m not sure there is anyone, G-d or otherwise, to surrender to.  So I’m left with surrendering to the pain, which feels like quitting.  Stupid, eh?  What’s that saying?  The definition of sanity?  Doing the same thing over and over and expecting different results.  So I guess on top of everything else, I’m insane.  Good to know.

I know it saddens those who have loved me, alive and dead, that I am going through this hell with no foreseeable end.  I feel like a wuss complaining about it… I feel like I have to put on a happy face no matter what, because otherwise, I am not brave.  I don’t feel like that’s what everyone expects of me; it’s what I expect from myself.

Whenever someone I know passes, I am insanely jealous of them.  Pathetic.  The loss of my father has definitely exasperated the pain and GI issues.  Not talking to him every day hurts as much as my physical pain sometimes.   And even when I do manage to distract myself for a short while, it comes back with a vengeance.  It’s on a mission of misery and I am now at a loss about how to cope.  It crops up unexpectedly, just like they tell you.  I’ll read about a book or movie and think “I’ve got to tell dad about this one.”   It only takes a second to remember, and then the sadness and pain come roaring back like the planes from the Boeing plant that’s nearby.  So yeah, that has added to the pain.  Part of the reason I am keen on shaking it off is because it would hurt my dad to know this.  It’s so confusing.  I think like that one second, and the next second, I think, “don’t be stupid; dead is dead” I’m hopeless.

So what is the answer?  Meditating, essential oils, medication?  They sometimes work for a while.  But really, little distracts me long enough to get relief with the exception of a few hours a week, if I’m lucky.  And I give thanks for those hours the whole time I experience them.  I feel as though I am coming unhinged, untethered and scared beyond measure that this will last unabated into an endless future.  The panic attacks grab hold and choke me if I don’t make peace with the demons.

I can only surrender for a few minutes at a time.  If that.  But in those few seconds, I get a peek at what it would be like to not have pain.  Increasing my anti-depressants will hopefully, help.

Saturday, September 27, 2014


My brother and his wife Fran were here yesterday and since I haven’t seen her since before my dad died, we all talked quite a bit about how he passed.  I know he made the conscious decision that it was time, but what I didn’t know was how he sort of “reported” back every time he came out of the pain medication stupor.   Fran was trying to come up with a word for it and I said it sounded like he witnessed it.  She said “yes!  That’s what it was…he was witnessing it”

That is how I want to go.  I’ve always said I want to see it coming, and I do (so long as it’s a natural death).  I want to be happy about it (as he was), ready for it (as he was) and not angry or troubled by what I have gone through (as he seemed to be).  It is amazing to me that he was able to do that; perhaps it was the drugs for which they finally gave him enough.   I’m still saddened that the last couple years of his life were painful, confusing ones.  I’ve had years to process my condition; it’s been a slow, steady (though sometimes faster than others) march into more and more pain; my dad’s as a fast plunge.  And he was 87 when it started; 90 when it ended. 

I think being able to sit back and watch what was your life go by, while also being able to see what’s ahead (he could) would be a fabulous farewell!  Letting go of the fear, the anger, unfulfilled wishes, unreached goals, self-degradation, helplessness, unfairness and all other negative human qualities we cling to like a baby with a pacifier; because a pacifier is exactly what those emotions are.  Self-pity.  We think we deserve more, need more, want more…and when we get it, it’s never enough.  And it doesn’t have to be things.  It can be a twisted definition of love (which is why it’s not fulfilling) or shame at not finishing college, not having children, having children or any number of a million other things we think has rendered our lives meaningless.  How sad.  I see myself in this picture often.

I really think when I reach a place where I am ready to REALLY let go of all those things, and not just in a momentary acceptance of letting go that feels like a soft, warm wind and lets me surrender completely, I will be able to do it.   They dying part might still take a long time, but if I am really in acceptance mode the whole time, it won’t matter.  Being in acceptance while being in the kind of pain I’m in will be the challenging part.  And it isn’t letting up.  Not one little bit. I’m so very tired.  At least once or twice a week I’m on my knees begging for release from the pain.  One way or another.  It helps to have so many loved ones on the other side.
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