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Saturday, August 31, 2013


Well, my doc finally increased my Fentanyl patch from 100 to 125mg.  So I need to wear two patches.  I did my first one a couple days ago and so far, nothing.  Now I guess I know why they have never responded to my request for more.  I am so conservative and they know it.  And I’m assuming it takes a while for it all to enter your bloodstream but my pain receptors are full so I don’t know what will happen.   I was in a shitload of pain Friday.  Had a doable day Thursday but when I feel good, I go out and within a few hours I am in agony again. 

Saturday morning: I haven’t been sleeping well at all and last night was no different.  Woke up in horrific pain.   Showered, changed my patch.  Praying today will be better.  Gastrointestinal problems back on the rise big time.  Has been for days now.  It is sooooooo hard to keep the faith.  It demands everything and promises nothing, as the saying goes.  Well, my pain is the same.  It demands my attention and promises nothing.  Right now ,my feet are totally numb and the pain is excruciating.  I don’t think this increase is doing a darn thing.

I just heard this song on “Criminal Minds” and I’m thinking its G-d talking to me.  It is very hard to be still when the devil comes calling in the form of horrific pain, but I know I am not alone.

Tuesday, August 27, 2013


Through the years my journey with NF has afforded me to meet other people with this disorder and with the exception of losing a few to death, for the most part, they have remained in my life.  I am very grateful for that because the feeling of isolation on top of the many challenges of this condition is too much without the proper support.  Although I get support from family and friends, my NF friends understand in ways the unaffected can’t (though not for lack of trying).  And they have their own challenges that I couldn’t possibly understand either.

My NF friends, most of whom I have only met online, are helpful to me in ways unmatched by all the drugs, acupuncture, BioLateral, drumming, etc.  They take some of the pain away just by listening, by expressing themselves to me in emails or in a comment to a post.  We share war stories as well as days of blessed respites from the pain.  We discuss other things as well; our friends, pets, books, movies and anything else we can do at home.  Most of us can’t drift too far afield; some of us get around on power chairs, some can’t sit for long (like me).   But we aren’t much different from anyone else in most ways.  It’s just that it takes us much longer to do the “normal” things (like meal preparation, showering, etc.).   And we remind one another to be grateful for what we can do. 

One person in particular means the world to me because her daughter is dealing with the same horrific pain I am and she’s only in her twenties.  And still her mom takes the time to tell me G-d loves me.  She encourages me not to feel guilty about writing something negative.  She supports me by sending me cards and even gifts.  All this while taking care of a daughter’s whose pain must split her own heart in two.  Watching a child suffer is unimaginable to me. Yet this woman also takes the time to reach out to me.  She has been doing that for years.  Her faith in G-d is strong and she reminds me of His love for me.  And I need to be reminded.

Being grateful is a tough one for me when I’m hurting.  And yet, that’s the time we should do it most.  I know that sounds crazy, but the only way to really change things is to start by accepting things the way they are.  Really.  People think if you accept that which you don’t want you are giving up.  That’s not the case at all.  Trust me on that one.  The only way out is through.  Which means facing things head on.  Now, accepting my condition doesn’t mean the pain will magically disappear.  Heck, if that were the case, I wouldn’t need this blog.  But if I accept it, my attitude will be the thing that changes and my experience of the pain will change as well.  If I could only hold on to that knowledge!  But when it takes over, (the pain), it takes over completely.   And when I have a day that isn’t as bad as they normally are, I give thanks constantly and try not to anticipate the return of the not-so-pink panther.

I sometimes think about the people who come and go in our lives; a friend I haven’t seen in five years came by yesterday.  She was diagnosed with blood cancer a year ago, but so far, her symptoms are mild and they say she could go 20 years without further symptoms or it could start rearing its head a lot sooner.  She was one of the first people I knew when I moved here 27 years ago.  Then she got married, they adopted a couple of incredible girls from China and they have been living a ferry ride away for six years now.  I realized when I saw her just how much time has gone by and all of the tears and laughter that went with it.  In those ways, I am no different than anyone else.

Looking for those similarities makes me feel less freakish.  Being in pain and having very limited mobility tends to make one forget that other people suffer too, many a lot more than you or me.  All together now:  Roof over head, food in belly, access to medication, friends and family.  I am blessed even though I am in pain.  And for those of you who don’t have the things I mentioned, you too, are blessed. Looking for, and finding those blessings can be a challenge.  Never stop looking until you find them.  Then never stop giving thanks for them.

Sunday, August 25, 2013


I hardly know what to write anymore.   I feel like I keep going over the same territory; the terrain of my pain and it’s gritty, clinging, pulsating insistence on being with me like an appendage that has no purpose other than to cause frequent trips to the abyss that once was my heart.   I’m lying here right now, counting down the hours until a friend gets here for a movie.   I feel like all I do is complain.  I feel angry that people are unable to “get it” but the anger is caused by the knowledge that there is no way for them to get it.  No way at all.  Like I don’t know what it means to raise a family, have a career, support myself, and contribute.  I can’t know that because it isn’t my life, just as pain isn’t theirs.  That they have stuck by me is beyond amazing to me.  For that, I am grateful.

But whatever test this is (and what life isn’t a test?) I really, really want it to be over.  It’s not like I have any control over changing the progression of my disorder or the direction that progression is going.  The only control I have is acceptance.  But the child in me is screaming at the top of her lungs for someone to save me, to understand, to make it all go away or to help me go away.  Forever.  If I don’t get to that place of peace and acceptance, is that another in the long list of my failures?  It’s a question, not a pathetic “poor me” question.  Because I HAVE had a long list of failures; connected to NF?  Partially. 

But my anger is boiling over right now.  Anger at not being able to stop being angry.  I was able to stop for a while but that was before I went into the hospital a year ago to get off the methadone which wasn’t working and I was really, really contemplating taking my life.  But the part of me that doesn’t want to take my life took over and I called for help from my pain doc, took an ambulance to the ER and stayed in the hospital for five days to try something else.  I’ve written about that experience, no need for a re-run.   I think the new plan has stopped working as well.  It all stops working, eventually.   So we are back to the one thing I can control: Acceptance.

How does one do that?  I can make a declaration to myself when I listen to my drumming or BioLateral CD’s.  I’m thinking I’d have to make that declaration over and over again, many times each day whether the pain is excruciating or manageable.  When it’s manageable, I know it’s lurking around, waiting for a weak moment to leap in and take control once more.  Even though I spend the manageable moments thanking G-d for them, I know excruciating wants to express itself.  It wants to laugh at me, to torment me and to make fun of me.  “She’s thinking she has the upper hand, isn’t that hysterical?” I hear it say.

And the truth is, I DO have the upper hand.  I can choose to be long suffering or I can choose to accept this.  Everyone who loves me knows I’m in pain and yet I have this sick need to bitch and moan because otherwise….otherwise everyone will think it’s not true, that I’ve been faking it or it’s not as bad as all that and I should be working (even though I know I rarely get out of the house and when I do, it’s only for an hour at best).  It’s crazy making thinking.  And in the end, who cares what people think?

Man, I need to work on this.

Many rivers to cross
But I can't seem to find my way over
Wandering I am lost as I travel along
The white cliffs of Dover
Many rivers to cross and it's only my will
That keeps me alive
I've been licked, washed up for years and,
I merely survive because of my pride.

And this loneliness won't leave me alone
It's such a drag to be on your own
My woman left and she didn't say why
Well I guess, I gotta try.
Many rivers to cross but where to begin,
I'm playing for time
There'll be times when I find myself thinking
Of committing some dreadful crime.

I've got many rivers to cross
But I can't seem to find my way over
Wandering I am lost as I travel along
The white cliffs of Dover
Many rivers to cross and it's only my will
That keeps me alive
I've been licked, washed up for years and,
I merely survive because of my pride.

Tuesday, August 20, 2013


I wrote something yesterday but decided not to post it.  I was having a horrible time pain wise; nothing helped, none of my meds, none of my “tricks”, not the meditating, drumming, BioLateral music….nuttin, honey.  So I’m trying to remember that I have good days too and in fact write about them to remind myself when days like yesterday hit, and they hit with alarming regularity, that I just have to hold on and pray the good day will pop up again…eventually. 

But the one I decided not to post could have rivaled Victor Hugo’s “Les Miserable”. Not as well written of course, and without the music which I’m pretty certain wasn’t in his original manuscript.  I never understood who would think, “Hey, let’s make a musical about misery” I would have loved to hear the original pitch for that.  But I digress. 

So it’s another day in painsville; not sure if I should go out or not.  Pam is here, and I’m grateful for that.  I just don’t know if I should go with her to the store.  On one hand, I need to get out.  On the other, I don’t want to encourage the pain to come back to the level it was yesterday.  And I got an email from one of my nieces yesterday.  All three are coming by tomorrow with my dad.  Four people is a lot for my small place, especially because  I need the couch to myself. But it will be fine.  And I love spending time with them, of course.

Okay, so I went to the store, made it back alive though in more pain but it will settle.  I skipped the library but sent Pam to drop off one book and pick up another.  I put them on hold from home (what a convenience that is!), don’t hear for months sometimes and then bam!  Literally, every other day I get an email telling me a book is ready for pick up.  And they only hold them seven days.  And my reading has slowed a lot.  I’m even getting print when it’s available.  Not all books are.

The tumors in my legs have been hurting like crazy.  I watch them pulse sometimes and am convinced I’m witnessing growth.  I want to have an MRI but don’t have the energy to do what I need to do….I would probably have to see the neurologist first but maybe not.  Nowadays, however, I need to be sedated for it because the pain of lying there on that hard surface without being able to move is torture.  So I figure all that is stalking me is eventually going to get me anyway, who cares if they are growing or if they have become malignant?   Those are the kind of moods I can live without.  My mind making things up as if reality isn’t challenging enough!   Will I ever learn?  Probably not.

Wednesday, August 14, 2013

A Good Day

Today is one of those days where I’m giving thanks almost non-stop for a “5” on the 1-10 pain scale!!!!  I saw my acupuncturist, who also uses essential oils and does energy work.  I always feel better when we are done.  I’ve had this weird neck thing on my left side; very tight.  Not the same as my normal pain…this isn’t even really pain, except when I move a certain way.  But she rubbed it down with oils and it feels better now.  And it feels like my hip hurts but I now think it’s just radiating down from my neck.

And, I feel well enough to make one of my favorite dishes; one I haven’t made in almost a year.  Partially because I’m not up to it because for me, it’s labor intensive.  It’s also normally very expensive.  Halibut is $25/lb. everywhere right now, and even though I only get ½ pound, I can’t justify spending that much.  But I happened in to QFC today, somewhere I don’t normally shop (but I was running early for my appointment so I stopped).  They had it on sale for $16/lb.….still outrageous, but getting ½ kept the price down and I get two meals out of it.  Ready?  Recipe time!

I sear the halibut for two or three minutes in a little olive oil, add chopped baby bok choy and spread my special made up sauce: a spoonful (be creative) of roasted red pepper (Thai) mixed with fish sauce and a tiny bit of sugar to balance the taste.  Then I add a little water; not much, just to make it kind of saucy thick.  After basting it in that, I turn down the heat, cover it and let it cook for about six minutes; no more.  Halibut is a wonderful tasty fish but you have to be careful not to overcook it.  Anyway, I do it all in steps because standing chopping, mixing, cooking all at once is way too much for me.  But doing it in increments works out fine.  I make some quinoa (tri color) on the side…Yummy!!!!

My dad isn’t doing very well right now and I’m very worried about him.  I want to go see him but of course, cannot.  I think he’s lonesome for all his buddies and not being able to see me that much.  We talk all the time, but we did that when he was in Minnesota.  I love him so much my heart breaks thinking about how close we are in miles but physically unable to manage those miles.

And I had a reminder yesterday about how important it is not to fly off your rocker over the little things.  I was going to get my mail and my car wouldn’t start.  Dead as the proverbial door knob.  And of course, not one other car in my lot so no one to ask for help.  I called the neighborhood car place, only nobody tows anymore.  You have to call for that separately.  They must have some kind of deal going on because he told me that’s the way it’s done now.  So I called them, and arranged for them to come by in the morning (today).  I didn’t get upset for a minute, even when they told me the cost.  Just bit the bullet.  Then my neighbor came home, I told him my problem and said I had jumper cables could you help me?  He did, it started and I cancelled the towing and the car fix place.  It felt great not to go into my usual over-the-top the sky is falling state of mind.

Monday, August 12, 2013

A Conundrum

A gripping fear of how much worse this will get sometimes takes hold and won’t let go.   And then I think of Stephen Hawkings, whose disbelief in G-d just might be what has allowed him to go as far as he has gone in life, in spite of having ALS for fifty years.  Amazing in itself given the normal life expectancy of someone diagnosed with that disorder, which is 5 to 10.   People who believe get mixed results, same as those who don’t.  But then, those that don’t believe don’t ask G-d for anything.  The only thing that gets some through life is “G-d’s Will” thoughts.  If you don’t get what you think you want, it’s “G-d’s Will” If you do, you praise Him.

Stephen Hawkings contribution to physics, astrophysics and the Universe is immeasurable.  And his findings neither prove nor disprove the existence of a higher being creating the Universe and all that resides within.

Makes you wonder.

I mean, I can’t even count the number of arguments I have had with the Big Guy (I vacillate, but pretty much am a believer), the number of unanswered prayers, the number of answered prayers and the battles we’ve had around my pain.  The “why, why, why” war cry that has no satisfying answers but for some unknown reason, I am compelled to ask anyway.  I try focusing in on what I can control, on staying in the moment, on giving thanks for the roof over my head, the food in my belly and my access to medications, even if they don’t work half the time.

Still, since we euthanize an animal so it won’t suffer I struggle with why the same opportunity isn’t afforded me and people like me.  I know that sometimes my emotions are moment to moment; an awful panic attack in the morning, searing pain in the afternoon and a settling down of all my challenges after dinner.  If I ended it while in a bad mood I think it would be bad because those moments pass and if you chose such an action during a bad moment you might find yourself asking “Oops, what happened?  What did I do?”   I wrote that somewhere else once.

So I think it would be best if you end it, to do it when you are feeling good.  A conundrum for sure.  But it seems to me there is a way to find inner peace and still be ready to move on….I hope I can get to that place because when the pain is intolerable, I don’t want to be making that mistake.  Can I exit when the pain is intolerable?   Can I get to a place of peace while in pain?   Can I let go of everything, worry about nothing, and make my peace with my life?  Would exiting mean I’m not at peace?   I mean, does being at peace mean you can tolerate anything so bring it on?

I’ve got to stop thinking.  Now.

Wednesday, August 7, 2013

Ah, Life

I say I want to die, to be done with it, to be released off this planet but truth be told, I’m as scared as I am in pain…and that’s a fair amount.  I want to believe I’m not afraid, that anything is better than this, but I don’t know that for sure, of course.  And if there is anything I can take away from this visit it is uncertainty.  Plus I need to stop reading my online papers.  And if I ever get my eye glasses back (a very long story and I have to go back again in six weeks so I still have a very old prescription in my old glasses) I can read again.  I can’t even think I’m in so much pain.  Nothing is distracting me.  These are the moments of life-ending temptation but if I die in this much psychic pain I’m afraid I won’t move on….and being stuck here is terrifying to me too.  So that’s not an option.  The only other option is to suck it up and accept it.

And I can’t gain an ounce to save my soul.  Maybe gaining an ounce will save my soul, who knows.  But I have no appetite and force myself to eat something every day.   My mom was like this; thin as a rail and we couldn’t get her to eat.  She would cry and say nothing tasted good, and she couldn’t tolerate much of anything food wise.  Certainly not anything that would put on the pounds.  I’m just like her that way, though she didn’t have NF.  That’s my bonus disorder.

At any rate, I am in the abyss big time and I don’t know why.  I know I’m tired of fighting for a life I don’t want.  I know I’m sick and tired of being sick and tired.   I know I’m thinking about Oliver and when he passes….that will be the end of pets for me.  No more energy.  Except for Oliver.  I’d push myself off a cliff to get him what he needs.  Okay, enough.  I will be praying, drumming and meditating away the day.

On the funny “strange” side of life, I got a very nice email from a woman about this blog.  She has NF too.  I wrote back, but didn’t hear again for a few weeks.  Then I got an email the other day from her and she wrote that she was sorry she hadn’t gotten back, her mom just had surgery and she’s flying out to see her…in Seattle.  Not only in Seattle, but LITERALLY walking distance (for someone other than me) from me.  Outrageous.  I wrote back and told her she could throw a rock and hit my apartment.  I mean, all she had to do is go right out of her mom’s driveway and drive ½ a mile and there I am!!!  So we agreed to meet.

She came over, we talked, laughed, compared notes….she got NF from her dad’s side; I’m a spontaneous gene change (they think).   She has three kids and one has NF, the others do not. I have no children; tubal at 25.  She says she is in some pain and the tumors are spreading.  She looks great; healthy and no visible tumors that I can see, though she can.  She kind of looks like I did 20 years ago; and she’s 20 years younger.  But that means nothing.  We laughed about the differences in NF people.  As I always say, if there are 20 of us in a room, you’d think we had 20 different disorders.   The bottom line is this: you can’t look at someone like me and think that’s how you will end up.  There is always someone worse off, someone better off.  Ah, life

Sunday, August 4, 2013

Self Healing

I’ve been reading things on self-healing and came across this:   it’s interesting and I actually do some of it anyway.  But like so many other people, he fails to mention genetic disorders as opposed to diseases.   When pop healers start talking, I listen closely to what they are saying and very few mention disorders.  In fact, I don’t think I’ve read one.  It’s all about disease.  So why not address it?  What they proclaim, and the way they suggest we “heal” could work for both.  Or can it?  Is that why they don’t mention it?  I mean, they discuss the cellular level and how our bodies respond to what we tell it.  And that part is true, at least for me.

We make ourselves sick all the time.  Why not make ourselves well?  I used to think our cells were replaced every few years.  I used to think they were copied.  If that’s the case, how can you heal if the mistakes in the cells are just copied over?  So I looked it up.  There are many places you can look, but here’s one: 
All I know is I pray, I meditate, I listen to BioLateral music (moves from left to right….best to listen with headphones….based on the eye movement therapy that has been around for years) and so far….well, you know.

Pain beyond measure.  Lonely, but when people come over, it’s all I can do to not act as miserable as I feel.  Most of the time.  I felt pretty good Friday but I didn’t sleep well Thursday night …one of my pills fell on the floor and didn’t get in me….figures.  I could have had a great day.  I changed the patch today and hoping today and tomorrow are better.  I am going to start practicing courting wellness instead of death.  That might be a good start, you think?  It’s just so hard to do when one is in agony. 

My nephew is coming over later.  That will be nice.  A friend came over last night.  She’s a dear, dear friend who drives 45 minutes to see me twice a month at least.  She has got to feel frustrated with me.  I’m not much company, I can’t go anywhere and basically, we eat something and watch a movie and she leaves.  I hope she finds something fun to do afterward….it’s early for normal people.  When I apologize for being so unfun, she asks me why I’m apologizing.  She’s a treasure and I thank G-d for her.  She has had her challenges but she seldom speaks of them.

I feel like such a loser.

Thursday, August 1, 2013

Coming Back

The pain and numbness have been relentless.  I just saw my acupuncturist.  I sometimes want to cancel because the drive over feels overwhelming.  But in the end, it always helps so I push myself. I have no clue how my 89 year old dad does it with his pain issues due to spinal stenosis.  Again, I marvel at how some undetected health problem or an accident can take life away in an instant but I keep on going.  And my questions never get answered.  People tell me not to ask anything when I’m in agony or depressed because you don’t get answers anyway and it just makes the pain worse.  Great advice, but who wants to know those answers when things are rosy?  Of course, rosy for me is a “5” on the pain scale.

And I ignore other health issues because what’s the point?  My hips hurt, my remaining breast hurts (had a mammogram about six months ago), I seem to be losing more weight….no appetite whatsoever but I do eat; not much, but I eat.  I’m sure the laxatives have everything to do with those issues, but I can’t not take them or I’d be in the hospital once a week and that treatment isn’t pretty.  If it weren’t so pathetic it would be laughable.  Sometimes, in the right mood, it is laughable.

I know too, that very few people residing on this planet have it “easy”.  Everyone has issues.  Even the no problem problem is an issue.  I don’t want it easy.  You learn nothing from easy.  I just want it tolerable.  Apparently, that’s too much to ask for too.  Wanting what we want when we want it is such an American/European thing.  All the things we feel we can’t live without; it all gets us in the end.  We don’t get it, it gets us   My question has always been about feeling that wanting good health isn’t the same thing as wanting a car.  But maybe it is. 

Okay, honestly?  There is one thing I want.  I want a virtual reality device, if they exist, because there are places I will never go that I would love to visit….not just the pictures, the feeling of actually being there.  I am not jealous of everyone in my life who have had those experiences…I just want to go to places like the Gallipolis Islands, Paris at night, Italy during the day.  I want to see the Pyramids.  So I guess there are things I want.  I want food delivered to my home but can’t seem to find someone willing to do it, besides the weight loss places.  Boy, someone is missing out on a great business opportunity.  Shut ins who need nourishing food.  I’m aware of Meals on Wheels but I have very specific needs….just a meal a day is all I need.  I can make the rest.  That’s my bucket list.

And in other news,    Pam called Wednesday.   She wants to return to work next Wednesday!!!  Fine with me, but I want to make sure she’s okay.  She was in the hospital for 10 days and has only been home for about four.   But she said they told her at her post op appointment she could return to work in 10 days.  Weird, because they said three to four weeks initially.  Now I must tell Marti.  The thing is, I don’t want to tell her anything until I’m sure.  Pam wanted me to tell you all 
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