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Saturday, August 16, 2014

Six and Counting

I know I wrote about this already, but more has occurred and I just like sharing it so that others don’t feel like they are the only ones this happens to.

When one is chronically ill, staying focused around doctors and hospitals is essential.  It’s essential even if you are basically well, but when your life revolves around healthcare (or lack thereof) learning your way around is the only way to survive and avoid all the pitfalls.   And there are many.  Not all of it is the fault of the healthcare workers since the system itself is in dire need of repair, but you must stay alert and make sure you question things that don’t sound right and stick to what you know is true and for what you know you can and cannot tolerate.

If I weren’t already out of my mind from the pain and from the tiniest of things that upset the balance of my difficult-to-manage days, the hospital where I’m having the MRI would surely send me to the Looney bin.  

·      It took one week for them to call back and schedule an appointment for an MRI of my thigh after my doctor’s visit, and then they had the order so completely wrong, I thought they had called the wrong patient.  “You’re having a brain scan in six months, right?”  they asked.  Huh?
·      Someone finally figured it out that it was an MRI of my thigh, and possibly my spine, but said it would be another few days before they could schedule it.
·         The first time they scheduled it, it was for my leg only
·         The second time they called to schedule, they said the doc wanted a full body MRI.  I told them no, unless I was under general anesthesia.  They agreed but said it had to be in two appointments.  Not what I wanted, and I explained the difficulty in me getting there, but I agreed.
·         The third time they called (very excited) was to tell me they COULD do it all at once after all, and gave me a date.  I was happy
·         The fourth time they called, she said “I made an error, we have to reschedule”.
·         The fifth time they called, it was to get information from me regarding my meds
·         The sixth time (I am NOT making this up) they called, was to get MORE information regarding my health because of the anesthesia.  And now I may need to come in BEFORE the MRI to go over it all in person….but I made it clear that would not be happening.

I am about ready to cancel it all together.  I understand their caution regarding me and all the drugs I take and general anesthesia.  I would not be surprised if they bailed on me.  I’m not telling them about my DNR until the last possible second.  They are freaked enough as it is.

Compared to what is happening everywhere else on the planet, this is small potatoes.  Cognitively, I get that.  My body, however, doesn’t understand.

Tuesday, August 12, 2014

We Don't Know

Last night I was looking through a list of movies to watch on Netflix and I saw “The Birdcage” with Robin Williams.  It was before I learned of his death.  I watched it and laughed.  And in the morning, read that he had taken his own life.

I know we only see people’s outsides and can’t possibly know what really goes on inside of them (but for a few).  And that’s with our friends and family members.  We don’t know a thing about celebrities except for what we see on the screen or read about in some glossy rag.  But reading about his death made me angry.

Angry because (and again, I don’t know him or his demons) I fight so hard every day of my physically tortured life and it’s a fight for a life I don’t even want.  Why do I do it?  It seems wholly unfair to think it would hurt others around me if I made that choice.  How can anyone (apart from those who have NF or some other physically challenging disorder…especially one that involves pain) know what it’s like not to be able to take oneself to the store, to drive, to travel, to have a NORMAL life?  But hell, what’s normal?  And whose to say Robin William's demons were any more or any less horrific than mine?

We’ve destroyed the planet, there’s war everywhere, Ebola will probably end it for many of us (see why I stay away from the news….usually) and I think, so what if my nieces and nephew have traveled the globe and been to places I can’t even dream of going to, so what if many of my friends are happily with a partner (though many are not), so what if they have careers, lives, etc.?  So What.

So I’m angry that Robin Williams didn’t fight harder.  For all that he had in the way of admiration and success.  And I don’t mean money.  I know he was divorced twice, but he had three lovely adult children and was currently married.  I know we don’t know what happens behind closed doors.  I know because nobody knows my true anguish about having to live this life of mine.

I feel I have to see it through or I’ll be destined to repeat it (or one similar).  I’m just too much of a chicken, truth be told.  Maybe G-d is waiting for me to do it.  We don’t know.  You can tell yourself any story you want to, but in the end, we don’t know. Belief and faith are all fine and dandy and I use both often.  But that doesn’t change the fact the in the end.  We. Don’t Know.

On the other hand, maybe he got it right.

Tuesday, August 5, 2014


Sometimes the pain is so bad I do nothing but pray for death.
Sometimes it’s just loud background noise and I give a prayer of thanks.
Sometimes I fear the direction this is going and how much longer can hang on.
Sometimes I let go and let G-d, giving my worries to Him.
Sometimes I sink in my isolation from the world, knowing how far I have gone
Sometimes my isolation gives comfort and solace and the abyss is far afield.
Sometimes the panic is breaking down every door in my home and body
Sometimes peace comforts me and lulls me in the Now.
Sometimes the thought of eating anything makes me sick and that scares me
Sometimes when the pain is tamed, I can eat and eat and eat.
Sometimes I’m so angry at everything and everyone my body tenses to steel.
Sometimes prayers and peace shoo the anger away and love steps in.
Sometimes I can almost watch the tumors growing and my tears flow with them.
Sometimes I lay still remember to practice being grateful.
Sometimes I am jealous of good health as cabin fever chokes my breath away.
Sometimes I remember that while not perfect, I do have access to healthcare.
Sometimes the devil takes hold and laughs as my NF brings me to my knees.
Sometimes I see him and call on G-d to help me deal with my challenges.
And He does.  One way or another, not always recognizable, He does.  I just need to look with better eyes, hear with better ears, and feel with a better heart.

Sometimes my head is empty of words to put down.
Sometimes I write anyway.
Sometimes I don’t.

Saturday, July 19, 2014

Wait A Day

I was ready to post a different piece but it was so angry, so hopeless and so over the top I dumped it.  Of course, it took talking to someone to get through it, though I didn’t mention what I wrote.  I just spoke of how I’ve been feeling, how bad the pain is and what am I supposed to be getting from this visit to Earth.  And I wrote of wanting to die (again).  That’s why I write and wait.  At least a day, sometimes more.  And sometimes I post the heavy ones anyway, as you know.  With all the bad news in the world (which I get addicted to reading) it just makes the pain that much worse.  But enough.  You get the drift.

So the small voice that I wrote about a couple days ago has been hard to hear lately, but after my talk with my friend, it has become audible again.  And I’ve been wrestling once again with the questions that plague me.  Today I was thinking about G-d and the Devil.  Is it G-d who wants me to learn something   through the experience of physical pain, and does it hurt Him to see me in such a state?  Does He feel relief when I accept it through techniques I have taught myself?  Could it be that this pain is coming from the Devil, and He is watching with drunken glee when I cry out for relief, even if it’s only to the stars and not to G-d?  Or is the Devil mad when I ask for G-d’s help?  And is He mad when I calm myself and accept the pain without complaint?  Okay, that last part doesn’t happen often…only when the pain is at about a “5” do I not complain.

Forgetting about the rest of the planet and all its ills for a moment, I must ask myself this question because I am terrified of how much longer I must endure and it helps to consider these things. 

I know I must finish what I started back in 1953, the year I was born.  Whether I asked for this, or was just given it, or whether it was nothing at all but one big crap shoot, I must finish it.  The only real choice I have is to go out with dignity, or kicking and screaming at the stars to see if they move.  Right now, with the pain where it is, the latter seems unavoidable.  But I hate being a foregone conclusion so I’ll fight the kicking and screaming with a different kind of kicking and screaming.  For now.  And hopefully, until it really truly is my time.

Monday, July 14, 2014

Dear G-d

Dear G-d,

I know you are overwhelmed with heartbreak over what has become of humanity, if indeed I can use that word.  This, I know, is not what it means to be humane.  The horrors that happen in every corner of the globe, every single day  here on Earth, make my own horrific pain ordeal pale in comparison.  It doesn’t feel like it when the pain from the tumors is beyond description; when I can hardly breathe, it hurts so much.  I watch the tumors pushing up against my legs, growing, hurting and causing untold pain. But I am far from alone, though I take little comfort in knowing the whole world suffers. 

I know you don’t negotiate, though I’ve tried that tactic for years: take me Home, or take the pain; I’ve even offered to take MORE pain so others suffer less if only I could go HOME soon after.  Surprise, surprise, it doesn’t work.  When I pray for others it is sincere and from the heart; no strings, just hope and prayer.  But still,  I want it to be over and I wish never to return.  But I guess that’s asking too much, or I haven’t learned what I came here to learn (if that’s what happens) OR, there is nothing and when this is over I won’t remember it because “I” won’t be here.  After all, we are only stardust.  To quote Joni Mitchell, “We are stardust, we are golden, and we’ve got to find our way back to the garden” Good luck with that.

My heart flutters all the time now.  Probably the drugs.  I don’t want to tell my doc because he’ll decrease the dosage and the dosage I’m on doesn’t touch it.  I guess I could try that myself.  Take myself off, go into major withdrawal, and die from the pain of it.  I wish to hell I didn’t think that was cheating. 

Help me, Dear G-d.  Help me complete my task here.  Help me from being afraid.  Help me to let go of anger, confusion, fear of the unknown, fear of living, fear of dying, fear of the pain and even fear of being released from it.  How could that be?  But it can. It is, and it’s confusing.   I can’t be healed because I’m afraid of what might be expected of me if I am.  There. I’ve said it.  Who am I now?  Who would I be if I were healed?   I have a fantasy about being able to heal others.  That is what I would do, if healed.  If G-d would give me that gift, I would find a way to use it.  I twist my mind in knots thinking about the “how” of it.  That’s insane.  I twist myself in knots worrying about the pain and where it will eventually take me.  That, I can understand though I work on letting worry go.  But worrying about how I would carry out a blessing that hasn’t and most likely won’t, happen?  Crazy.

I need to live totally outside my body in order to survive.  All. The. Time.  And it’s just not possible. I need to take myself away, and I need to stay away, in order not to think about taking my life.  People who are in pain but have an “expiration date” (and I know we all do, but I’m talking about KNOWING what it is) might be able to deal with the pain, or at least have it managed better.  Not so with people who are NOT dying but are living in agony.

I’m having a hard time accepting that I requested this life.  Maybe the fact that I’m having a hard time accepting it means I haven’t learned it yet.  Damn.

Saturday, July 12, 2014

Just Stuff 2

My generous family bought me an air mattress to replace my 30 year old regular one….haven’t slept well for over a year and even with the soft topper, I feel the tumors and keep waking up.  The first night I slept uninterrupted for six hours straight.  And dozed for two more.

Of course the next night was back to not sleeping.  I do need memory foam on top of the air mattress so I’m ordering some from Amazon.

I’ve been giving a great deal of thought to these dang tumors. I just turned 61, which means I have lived 222,075 days so far (adding in the days since the 23rd).  I don’t know how that translates into per-diem tumor growth because I doubt that they grow every day.  But they are growing now, and a whole lot faster than before.  And how many days have I left?  Who knows.

Pain is tormenting me lately. I don’t seem to have any good days anymore. And the distractions are not working; I’m out of books and videos for another two weeks until the Library on Wheels comes back.  I got gift cards for Barnes and Noble for my birthday  but I can’t get there and when I go online, I can’t find anything I want or if I do, I think, gee, I could just get that out of the library.  Hopeless.  I’m hopeless.

M help took a couple days off and they sent me a replacement but only for a few hours on Friday and an hour on Monday.   Took all my energy explaining where things are, how things have to be done, etc.   I need to go to the store but likely won’t get there for five more days.  I see my pain doc on Tuesday so she isn’t coming that day either.  My brother is taking me.  They can’t take me because it’s in a different county.  Frigging rules drive me nuts.

I’m really freaked about this appointment.

Tuesday, July 1, 2014

Preordained Free Will

I was thinking today about all the things that can feel out of our control.   If we fall in love.  Who we fall in life with.  What we choose to do in life (or if it chooses us).  Whether or not we are healthy.  If and what and when we eat.  And so often we are tempted or challenged by things we can’t even identify.  But the one thing we can do, the only thing we can do, is choose how to respond to the situations or temptations that present themselves.  When the pain is overwhelming as it is has been, I can writhe and wither in its clutches or I can choose to be the one in charge.  In pain, still, but in charge.  Doesn’t seem possible, does it?  If I use all the things I have learned (like meditation, “journeys” through drumming, prayer, etc.) my perception of the pain changes.  It becomes more tolerable, less intense.  Not for long of course; I must keep at it every minute of every day and that just isn’t possible.  But I can get relief longer if I am aware of it as much as possible.   So I am constantly pulling myself back from the abyss.  Unless I’m on the pity potty.  And as you know from some of my entries here, I’m no stranger to it.

You see, I am beginning to think that although I believe we have free will, every single decision we make, every breath we take, every blink, every yes or no was decided before we got here.  That sounds like it’s all preordained, but really it’s not.  Not if we were the ones who made those choices before coming into consciousness.  So “we” made those decisions, just not here. But can you make choices without consciousness?  At least consciousness as we know it?  Choices we now have to live out, here on Earth? So maybe, in the end, that fight to survive or to die was made a long time ago.  From wherever it is we came from, wherever it is we will go.  I mean, what’s beyond the known Universe?  A brick wall?  And if so, what’s behind the brick wall?  It’s mind boggling.  The more I watch and read on the Universe, the more I’m convinced there must be a higher power of some sort at the controls.  I think I was counseled on what I came here to learn and agreed to the life I now have.  I just don’t know exactly what it is I’m supposed to learn from living a life of physical pain.

My challenges seem small compared with the rest of the planet.  As I always say, having a roof over my head, food in my belly, access to the medication I need, friends and family…I am indeed lucky.  I freak out, thinking I could, at any moment, lose all that.  Which is why staying in the moment is so essential.

Please, someone email me and remind me of this when I’m off the rails!!!

Tuesday, June 24, 2014

Good Luck With That

You know that voice?  The one that screams, yells, bangs, cries and demands your attention?  The one that insists that you listen to it?  The one that comes any time of the day or night, uninvited and cruelly convincing?  Yeah, that one.  The one you need to tune out.  Right.  Good luck with that.   But so far, I’m winning.  Barely.

What I notice when I hear that voice, the one that tells me in loud whispers “What’s the point?”  “Why bother?” “What does G-d want from me?” is another quieter voice behind it, speaking softly and telling me not to panic, all is well, hang in there and when it’s time, don’t be afraid.  I wish that were the louder voice, but that’s not the way it works, I guess.  Truth be told, if you practice listening to the quieter one, it sometimes flip flops and does become the louder one.  But I never know whether or not to trust it.  Could be a trap (LOL).

Looking in the mirror scares me, as does looking anywhere on my body.  I think about people with skin that is smooth and blemish free, people who freak out at little moles and bumps and I have to laugh.  I mean, I know skin cancer is a great fear for people, as is melanoma, but with all my lumps and bumps and moles and lesions I just can’t even think about it.  I wrote about that in “One Square Inch” but now, it’s like one square millimeter.   They grow, and they grow and they grow.  Like the dandelions I used to pull up by the roots when I was a kid.  Maybe there was a part of my trying to yank the tumors out of my body.  When I wrote “Bumps of Beauty” I was more hopeful, more positive, less riddled.  Trying to keep my own words fresh in my mind is not an easy task.

The tumors in my head give me unreal headaches, mostly due to lying flat and my head resting on a pillow.   But I need to lay flat because of the tumors on my legs and spine.  I used to be able to balance a plate of food on my leg and eat half sitting up but I can’t have a plate (or a book) on my leg anymore.

I live in Washington State, which, along with the state of Oregon, has a death with dignity law.  However, it only applies to people who are in fact, dying.  And one must be signed off with a bunch of doctors and have a long checklist of things they must meet in order to qualify.  Someone like me, who lives her life in agony most days, does not qualify.  I could live like I have been (for the past 10 years) in a continuing downward spiral of pain without death.  Torture with non-effective pain management.  From my screaming meanie point of view, it’s outrageous.  From my reasonable view, I get it.  Where is the cut-off point?  Many people can accept that if someone has a knowable expiration date, it would be okay to end one’s own life (apart from religious viewpoints). 

 If the powers that be make an exception for people like me, who is next?   Someone, perhaps, with bipolar disease who doesn’t want to live in the grey world of medication but cannot live in the topsy turvy world of being bipolar?  How about someone with severe depression that medication doesn’t help, who has lived institutionalized most of their lives?  Or how about a convict with no hope of getting out?  The list goes on.  It’s a slippery slope, but I’m sliding down it all on my own.   And whose business is it anyway?

One of the main reasons I have not given into it is fear of doing it wrong and ending up worse off.  And also, believing, right or wrong, that if I don’t live my life all the way to its natural end, I will be destined to repeat it.  No. Thank. You.

Monday, June 23, 2014


I have a friend whose daughter has NF.  Don’t want to mention her by name, but she knows who she is when she reads this.   I just got an email from her, in response to one I sent to her, thanking her for another in a long list of gifts she has sent me over the years.  He words never cease to amaze me.  They always stir up feelings of peace, along with many questions.  They always lift me in ways that I can’t quite explain, cheering me on to a life filled with meaning, instead of despair.

I am always surprised when I find myself looking in the face of another birthday, as I am today, June 23rd.    It’s always been a very mixed blessing for me; mostly, I have hated birthdays because they represent another year without much to show for it.  Besides how I deal with my pain and my living situation.  I have made peace with living sans cat.  Surprisingly, it wasn’t very difficult.  I think the lack of stress around caring for my pets; worrying about what will happen to them when I pass, the cost  of keeping it healthy, feeding, cleaning after it (my helpers don’t help with the pet, except to clean the area around the litter box….I clean out the box) has made it tolerable.  I miss all the good stuff about loving an animal but if you can’t take the bad with the good, you shouldn’t have one.

I prayed last night that I would have a tolerable day because people are stopping by for my birthday.   I woke up in horrible pain and it hasn’t abated.  Not that my body knows the difference between my birthday and every other day of the week.
I will do everything I can to be cheerful today and welcoming to those who drop by.  My friend Anne came by last night with gifts, food and what was to be a movie….but I couldn’t get Netflix to work.  It happens all the time on my television….Comcast makes Netflix hard to work, apparently.   Anyway, she is such a dear friend and I love her so much for spending all the time she does with me.

I’m going back to my book now.  The Goldfinch.  Getting incredible reviews and it is interesting but I think it’s getting more praise then is deserved, frankly.

Sunday, June 15, 2014

After The Last Time

The Last Time

I slept like the dead last night but for some reason, today I am flying off the walls, stress wise.  I guess it’s because I’m going to visit my dad and I’m a bit worried about it for his sake as well as mine.   I haven’t seen him in months and I know there have been a lot of changes and I must prepare myself for them mentally and emotionally, which is never easy. 

A friend of mine was planning on visiting him on Saturday but he told her not to come and to please make it another day.  I know it’s because he’s worried about our visit; and I’m worried that he thinks I should have made the effort a long time ago.  He probably doesn’t think that, but my mind goes wandering off by itself in the darkest corners of the Universe and I pad along without question, idiot that I can be.  Okay, this post gets better, I promise.  LOL.  I just re-read what I wrote and I had written “bitter” not better.

I want to be there to support my dad with whatever his wishes are; and I know he wants to die.  He’s in pain, exhausted, tired of fighting and tired of living.  I know the feeling.  I have given him permission to let go a million times but he needs to see me in person and as a good friend of mine wrote to me (when I told her I was going) “It’s the right thing to do” Of course, I start thinking she has wanted to say that to me for a long time and that I’m not a very good daughter for not trying.  Again, those dark, cobwebbed corners call me to berate me and I listen keenly, right or wrong, crazy or sane.  Sigh.

The thing is, after helping my mom cross, I feel it’s the right thing to do for one who suffers.  Maybe that’s what my friend meant, knowing I had helped my mom. I need someone to do that for me, though no one thinks it’s time yet. No one but me, that is.  But I’m the only one who can say (besides of course, G-d).   And what does G-d think about me, if He thinks about me at all?  I was watching a couple episodes of “Saving Grace” about this out-of-control (but employed as a cop) woman who an angel tries to save.  I like those kinds of shows for some reason.  But I’m still very conflicted about what my life means, in the grand scheme of things.  Probably not much.   I think back to my early years and all the physical challenges I’ve always had and how title I’ve done with what I do have.  They say it’s never too late but given my level of pain/function, I’m not sure that’s true.

The hardest part for me is letting go of whether or not I’m believed.  Who cares? I know but still….I think I’m being judged all the time by those around me.  Because the only way I can function is to take myself out of my body and I do it so well, people often see me functioning at a level that confuses them.  It’s not a high level by any means.

But I can walk (with aid) and I can shop (on rare occasions) and I can fix my meals (with trouble) and take care of my personal needs (with caution) so long as I keep hearing the “take it slow” voice.

After the Last Time

You know how you have a thought and then lose it in almost the same instance?  Like trying to chase a dream that’s dissipating like a reflection in rippled water?  Just gone.  Well I have those thoughts all the time.  And I was thinking of my visit with my father on the long drive home (which Fran and Jeff and Ben made incredibly comfortably for me so it wasn’t bad at all…especially because I was also quite drugged.  Nothing beyond what’s recommended but more than I usually I allow myself due to side effects) about how we never know when the last time we see someone or do something, that it will be the last time that event happens.  Ever.  Due to many unknown factors like death, moving, the closing of a particular store/restaurant or the end of a friendship or marriage.  It doesn’t matter.  What matters, is that we are totally unaware when it happens, THAT it has happened.  Not until you happen to remember that experience or person and say to someone else “Who was that again?”  “What was the name of that place?” “Remember how we used to go to that one restaurant, what was the name of that again?”

It’s an interesting experience if you think about it.  It was the last time you did that particular thing, but had no knowledge ahead of time that it would be.   The last time.   What would you have done differently, if anything, if you had known?  Maybe nothing.  Maybe you wouldn’t believe that would happen.  Maybe you would just shrug and say “on to the next” and laugh.

Getting older gives you no prior knowledge of what is to come.  Not in big, flashy lights at any rate.  But if you listen, you can hear those wise voices I am always going on about, the ones that speak softly but carry a very big stick.  They are wise, wonderful, supportive and carrying.  They don’t always give us the answers we want, but they do answer.  You just need to listen, to be open, and to know that you are not your body.  You aging (yes, even the young among us), sometimes challenging, sometimes acceptable (in our minds) but always perfect no matter what body.   Give thanks for it.  Even on, maybe especially, on those days we want to chop all our limbs and scream at the stars for the pain that we live with.

And then remember everyone is some kind of pain; so many, so much worse.  The pain of families being torn apart in war, hunger, massacres, “random” shootings by schoolchildren or psychotics (well, are they anything else?) the craziness of our world and all those who reside in it…..sorry, don’t mean to ramble…I’m just so grateful for my day with my dad, sharing memories, making new ones.

Happy Father’s Day
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