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Thursday, January 22, 2015

Round and Round

I’ve been thinking a lot about my surgery and what I will feel if this doesn’t relieve me of at least some of the pain.  It’s my biggest fear.  Not that actual surgery, but the “what if’s” when down the line, I’m healed from the surgery but the results aren’t what I hoped for.  And when I doctor said “A 20 to 80% reduction in pain” I thought that 20 sounded good.  But what if I don’t get even that?   I have a lot of supportive people in my life, including someone whose daughter has NF and who has been telling me it will make a difference because it helped her daughter when she had pain in her arm.  Bless her for telling me that!

Life is constantly throwing you off track, regardless of who we are.  My washer/dryer broke last week and after the maintenance people tried six times to fix it, it’s officially toast and will take two weeks to replace.  So now I have the laundromat to cope with.  I found myself getting twisted in a knot about it but then realized I do have help and it will get done.  And I’m trying to organize my meds so that I have all I need after the surgery so I don’t have to worry about getting them.  It’s not easy, for one of them isn’t due for a refill until after the surgery.  All these little things are like gnats flying in my face.

So I asked myself, what will I do if it doesn’t work?  If I know that my life will continue to be what it’s been pain wise, as far into the future as I live?  And it’s a challenge.  Think of a big circle.  I start at the abyss at one point on the circle, worried, out of control, in agony and on the pity potty, wanting nothing more or less then death.  Praying for it.  Trying to get those that I love who have passed to help me cross over.  You know…really crazy thoughts.   What stops me?  A couple things.  I tell myself that I am here to learn something, to grow spiritually and to be as gracious as I can with what I have been handed.  And what if I tried to off myself and it doesn’t work?  What if I end up in worse shape than I’m in now?  What will that do to my family?  My family knows how I feel and would forgive me if I were successful, but if I’m not?  Heavy burden to put on them.  So I try and move away from that point on the circle, and use all the skills I have to move forward, stay in the moment, and just accept whatever happens.  And everything lifts for a little while.  I write, watch a movie, play a game, read a book…and I feel better.  But eventually, the abyss comes back around, or I go back around to it.

Yikes.  The NF support group I’m involved in helps.  It will end in five weeks, but we have each other’s contact numbers through Skype.  And I may miss the session after my surgery.  We shall see.  In the meantime, I’m hanging in there, like everyone else!

Tuesday, January 20, 2015


My surgery is coming up on the 30th.  I'll try and write soon after that.

Life continues to challenge, but one breath at a time, right?  Little things that happen to everyone (like my washer/dryer breaking and no new one for two weeks!!) keep me stressed if I'm not careful.  The thing is, life's gnats happen to everyone but when you top it with searing pan, it gets to be on overload fast.  And what makes me angry is how I have no way to deal with those things without needing help from someone else.  I feel helpless and become hopeless.

My NF Skype support is helpful.  Last week, the Seahawks were in the playoffs and horribly behind (I don't watch football, but you get swept away) and I had the site up in the background while I was on the call.  Toward the end of the call, I heard fireworks and thought "Gee, what a supportive city; we lost but we cheered them on anyway"  Then I found out we won.  Funny.

Tuesday, January 6, 2015

NF Coping Strategy Group

I mentioned a while back that I was going to be starting a coping strategy group that NF was sponsoring.   It started Sunday, January 4th.   So far, I am happy I agreed to it.  By the way, if you ever want to be a part of anything related to NF, whether they are Clinical Trials or workshops like this one, make sure you are on the NF Registry so that they can contact you.  Just go to (Children’s Tumor Foundation) and look for the Registry  It’s easy to do and if something comes up that you are qualified for, they will contact you.

I was surprised at all the stuff it brought up for me.  I thought I had a lot of coping skills; I meditate, do acupuncture, write, read….but all of them are wearing thin and I didn’t realize how thin until I heard other people in the group talk about their challenges.  I still have each and every one of them.  And my depression, anxiety, sleeplessness and boredom have reached a tipping point.  Death is on my mind much of the time.  But alas, I have convinced myself I must finish what I started or be destined to repeat it.  And I have no desire to return.

That said (or writ) it was interesting to hear an echo of my own pain, physical and psychic, in the voices of others.  I was impressed at the mobility of one in particular, and felt the pangs of jealousy and shame.  Jealous of her being able to move about in the world and ashamed that I haven’t “made an effort” to do so (not true).  She, on the other hand, felt shame and embarrassment at the tumors themselves.  Most of mine are on the inside and I heard once that people with internal tumors like me have pain issues, while those with the “bubble” tumors on the outside deal more with the stares and the questions.  Either is no walk in the park.  NF isn’t for weenies.  I have to remind myself of the piece I wrote years ago “Bumps of Beauty” posted on this blog.

I watched this TED episode about these kinds of feelings.  One presenter was saying that when parents or people from the outside try to help him (forgot his ailment) he felt he wasn’t good enough the way he was.  I never gave that much thought but I burst out crying so I guess its been an issue.   My parents wanted me to be like everyone else and I just wasn’t.  I did poorly in school regardless of my father’s rage around my inability to do well in math and science.  I did excel in writing and English.  And history.  But I barely made it through.  I was sick A LOT when I was a kid.  Hopefully, attitudes around people who are different have changed, but not by much I fear.  Bullying is more prevalent today, I think.   And of course people who love you don’t want you hurting.  But I think to some degree, having a “normal” child is less work, less stress and fewer tears than one who is challenged physically, mentally or emotionally.  That’s just life.  And “normal” children don’t necessary turn into shooting stars, either.  It’s all a crap shoot.  All of it.'

Just in the mood for this song!

Wednesday, December 31, 2014

One Year Ago Today

It was a year ago today that I had to put Oliver down.  It still feels like yesterday.  I still miss him terribly sometimes. He used to sit on top of the couch looking over my shoulder while I read.  He comforted me when I was having a really bad pain day, slept with me with a paw over my arm, and licked away my tears (usually if there was a smudge of food on my cheek).

I cannot believe how fast time wizzes by.  Faster and faster, it seems.  I still see you, Oliver.  I still feel you and think about you and wonder how you are doing, wherever you are.  As it is with my human friends and family, it’s hard to believe there is now just nothing left.

Sir Oliver

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.
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