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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.

Friday, September 19, 2014

Virtually Lucid

Okay, this may seem like a weird post but I’ve been thinking about this stuff a lot, lately.   I think about it a lot anyway, but more so lately.  In the end, this is about the tricks I use to (when it works) help keep the pain away

I had my first lucid dream when I was about six years old.  I’ve only had about five or six in my life that I recall.  And they all happened before I started taking medication of any kind.  During this period of my life (before the age of about 35) I didn’t take much more than the occasional aspirin.   For those of you who aren’t familiar with lucid dreaming, it’s when you become aware that you’re dreaming and you can choose the direction of the dream.  The problem is, the experience is so exciting you often wake yourself up; so you need to take care to remain calm while still enjoying the action.  It’s almost like virtual reality.  

Lucid dreaming can be self-taught, and it’s worth it.  Imagine going places and doing things that in reality will never likely happen.   Flying dreams usually precede lucid dreaming; so if you dream you are flying, chances are good you will slip into lucid dreaming.  But how can you train yourself to dream those kinds of dreams?  There are a number of ways, and I forgot most though there are good books out on the subject.  However, the best way I have found was this:  No one questions their consciousness while awake (unless you have a mental health challenge…but not always then, of course) because what’s the point?  You know you are awake unless trauma has occurred, then sometimes, no, you don’t.  But try this sometime.  Question your consciousness during the day.  Ask yourself “Am I awake or dreaming?”  The reason for doing this is because if you do it a few times a day for a few weeks, eventually, you may start to question consciousness while you are sleeping and when that happens, the act of questioning it can throw you in a lucid dream.  Then watch out, because you will be in the ride of your life.  But be careful; too much excitement will wake you!

The thing about being lucid when I am sleeping is for me, also about keeping my conscious self out of my pain-ridden body while awake.  It’s not easy sometimes, and when I do manage to leave my body for a precious few minutes, I am most grateful.   So it’s about being able to control consciousness whether awake or asleep.  Like meditation.   Sometimes I try to tell myself that if I work on it, I can train my body to interpret the pain as pleasure.  That would be a good trick.  I think the best I can do is leave my body for short periods of time. 

Maybe I could travel the world that way.   There are plenty of pictures on the Internet so trying to imagine a city, a jungle, the ocean…shouldn’t be difficult.  Hold the image.  Fly away.  Or, I could get a virtual reality device.  I don’t know why those aren’t readily available by now.  Fly, fly, away.

Tuesday, September 16, 2014

Absolutely Still

A pool of water doesn’t reflect unless it’s absolutely still  


Something I need to keep in mind.  I heard it today and thought I’d add it to balance my pity potty post.

It is becoming increasingly difficult to continue this journey.  The pain is understandably incomprehensible to those not familiar with chronic, intractable pain; even me most of the time, and nothing suppresses it. I just can’t wrap my mind around that,  And I really can’t imagine this pain and lack of management  continuing far into the future.   It’s so frustrating to keep hearing “your tumors are stable” after an MRI.   The pain rarely shows any mercy and I’ve been getting more and more dizzy spells.  And as I explained in the last post, the pain can increase without the tumors increasing.  I am far from stable.  Physically, emotionally, spiritually…far, far from stable. 

But shortly after sitting down to write this, I actually caught a break for a few hours and even left the house.  I am grateful for the break, trust me.  I feel small and petty when I complain that a few hours a month isn’t enough.

I felt withdrawal symptoms Saturday; it happens every once in a while.  And I have a new patch on and I took some back up morphine.  My chest is an angry red rash….maybe from the patches, maybe from one of the essential oils.  Or maybe just the tumors which riddle my chest (and everywhere else). Who knows?  I’m not sure I care.  But I talked to my pain doc’s nurse and she suggested I change the brand so I called the pharmacy and requested they do that.

I have this fear is that if I take matters into my own hands regarding ending my life I will be forced to come back to Earth and repeat another physically challenging life.  That scares the beans out of me.  I drive myself crazy thinking about the existence of G-d, telling myself that not so long ago people though the Earth was flat, then they thought it was the center of the Universe and when it was proven otherwise, people were burned at the stake or locked away in an asylum for speaking that truth.  So are we clinging to one last fantasy?  The one that has been drilled into our heads since who knows when?  Letting go of it doesn’t seem possible or even imaginable for some, me included though I give it a lot of thought.

I’ve had a lot of unexplainable things happen in my life, including spontaneous memories about living and dying in the Holocaust.   One major one came out of the blue and was very powerful.  And if that were true, why was I was then thrown into this life of hell almost immediately after?    I am so grateful my father is out of pain.  And I do feel his spirit.  At least I tell myself that’s what I’m feeling. I keep having these “dad moment memories” that make me smile or bring a tear to my eye.  When I was a kid, our house was in front of this large swamp and beyond that, a railroad track.  When my dad came in my room to say goodnight, you could often hear the whistles blowing from the train.  My dad would tell me it was ‘the bad guys leaving town”.

I love watching documentaries on the Cosmos, but I ask myself, once we find the answers to everything, what will become of faith?  Think about it.  For instance, if you were taking a course in something, and you knew every word in every book and every answer to every question prior to taking the class, why take it?   What joy would there be in it if there was nothing to learn?  And what joy would there be in being alive if there were no more energetic arguments?  Of course, no more wars would be nice.  Boiled down, they are always and forever about religion.  Not faith…religion.

Parts of our consciousness survive the body, is what I think.  If matter cannot be created or destroyed, it only makes sense that part of the soul does survive.  And maybe that’s all that is happening after death.  Some part of our being refusing to let go.  Clinging to the life we just left.  Ha!  I assure you, I will not be clinging to this life.

So if the body gives me nothing but pain, what the heck am I still hanging around for?  This is beyond exhausting.   I wish I could figure out a way to get my body to respond to this agony as if it were pleasurable.   I’d be in ecstasy all the time!  Would not need any painkillers…how ironic….addicts take it thinking it will be ecstasy, those of us that need it feel nothing but anguish, something the ecstasy- seekers eventually discover.

My dad didn’t read my blog much when he was alive; he told me it made him sad.  I told him to stop reading it.  But now he probably knows what’s in it.  Sorry dad.  Same advice.  Don’t read it.

Tuesday, September 9, 2014

MRI Results

I finally got a call from my doctor about the MRI I had 11 days ago.   I am always amazed at the answer, because the symptoms are always worsening.  But he said there was “no major” changes and nothing in the brain in the way of tumors.  But a friend of mine whose daughter has NF and a lot of the same issues I have, told me her daughter's pain doctor told her that even though the tumors might not grow, when they sit on the nerve sheath for years on end they eat away at the sheath itself, thus causing increased pain when the tumors touch the nerve.  Good to know!

It was frustrating because I know I wasn’t in the MRI anywhere near as long as they said I would be so it makes me wonder.  I questioned him about it, asking if he was sure they got it all.  He was.  He also said the ones in my leg may be operable, and a doctor at another clinic (but still with the UWMC) will be calling me to set up an appointment.  Of course, he is not sure whether or not removing the ones that are hurting so bad will actually help with the pain.  My other leg hurts too, but I am not sure they imaged that.

I am exhausted, depressed and still grieving, of course.  And I’m not sure if the news makes me feel better or worse.

I just watched this movie on the life of Stephen Hawking.  Talk about your fighters.  It was amazing and made me feel petty and small about my constant complaints regarding my challenges.  I’m in constant pain, it’s true.  Little helps relieve it, that’s true too.  But I can walk and talk….though driving is coming to an end, I think.  I’m not in a wheelchair, I don’t need nursing care and I can type on my computer.  Still, it’s hard not to gripe.  Something I need to work on.

Do I want to put myself through a surgery that may or may not help with the pain?  I guess I need to talk with the surgeon first.  I’m scared.  I’m always scared.  And living in fear of what might happen is no way to live.

Thursday, August 28, 2014

...And Letting Go

I got the call at 1:30 this morning.   No matter how you prepare, they say, you can’t quite believe it when the news comes.  I am writing this 30 minutes after I received the news, as I can’t sleep anymore.  I had already decided yesterday to have the MRI regardless.  My sister had called earlier to tell me it would be “any day” according to the nurse.  I guess Hospice nurses can tell with pretty fair accuracy.

But I prayed and meditated on it yesterday afternoon; I had a bit of a panic attack after my sister told me what the nurse had said.  I calmed myself down a bit, then had this very brief moment when I felt comfort in my father’s spirit.  He would have wanted me to have the dreaded MRI.  I can feel it.  I haven’t stopped feeling it, but that voice that shames you was telling me to cancel it.  It was the wise voice that set the other one free of the shackles it had me in.

I wanted to be there in person to say goodbye, but I didn’t really need that.  I just needed to feel his spirit in me.  And I did.  He gave me so much, he will be missed like crazy, and hopefully I’ll remember his life lessons for however much longer I must endure the shackles of NF.  I must free myself of those as well.

Goodbye, my dear father.  Rest.  The physical pain is done for you (I pray).  You will always be with me.  You did a good job and I will always love you.  And strange as it may seem, the day of my dad's funeral service is September 2; which would have been my parent's 67th wedding anniversary.  funny, that.

Wednesday, August 27, 2014

Hanging On

My dad is still hanging on, though mostly sleeping or groggy or just out of it.  I haven’t spoken to him in days.  My brother and sister put the phone to his mouth so he could say hi a few days ago, but that hasn’t happened for a while.  They are both burning the candle at both ends, taking care of him and their own lives.

I found alternate transportation to my MRI on Friday.  Well, I’ll take a taxi there but a friend is picking me up.  It’s all I have to offer in way of helping them.  And the pain has been through the roof again, as have my GI issues, which have been tamed for months.  I know it’s nerves and I’m working on that with prayer, meditation and essential oils.  This morning for the first time in over a week, the pain is at about a 6 instead of the 8 or 9 it has been.  I’m praying it stays that way for my MRI.  And of course, I want to cancel the whole thing.  But the purpose was to see if the tumors in my leg are operable. 

I’m trying to take a page from my dad’s book on life.  Keep fighting, kid.  But all I wanted to do for the past few days is give up.  Then my niece came by yesterday for a visit.  She works at Crate and Barrel and I had mentioned all my juice glasses but one had broken and she brought me 4 great little juice glasses.  We talked about life, about her upcoming semester in the South of France, books, her boyfriend and politics.  She’s beautiful, smart and excited about life.  I adore all my nieces and my nephew and talking to them is a joy.  I need to remember that.

I may be participting in an NF project on coping with having NF.  It’s a long project, and frankly, I think I do pretty well with coping.  Not always, but nothing works all the time.  I need to think more about filling in the forms (I’ve already been accepted; I applied a long time ago but forgot about since it is starting so late after I applied....October, I think).

And reading it yesterday, in the state of mind I was in, I thought “I’m not going to be around long enough to finish”   But I’m always having those thoughts.  When it gets miserable, I have to remember to just let go.  As in, “Surrender, Idiot”

Good luck with that.
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