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Tuesday, April 30, 2013

The Way Out is Through

I’m still reeling and weeping from the news of Ted’s passing, but deep down I am happy for him.  But can you truly be happy for someone when you’re jealous of them as well?  Maybe not.  Okay.  I must work on being happy for him without getting my stuff in the way (when will it be my turn, etc.).  Wanting what we want when we want it is never a good thing, whether our desire is for a car, a partner or death.  There is waaaaaay to much to learn here.  I’ll never get out!!!  Help!  I’m stuck here on Earth!!!  Someone come get me!!!  Whew.

Pam got some bad news about her liver.  As I wrote earlier, they put her through a bunch of tests looking for cancer somewhere in her body because it often ends up in the liver (but doesn’t necessarily start there….I guess).  Anyway, they are going to be doing a biopsy of the mass and have prepared her for the very real possibility it is cancer.  They even started going over treatment options and putting her on a list for a transplant.  

I am lucky that I have my family and friends and a support system in place.  She doesn’t have that.  If she can’t work, she said she’ll be on the street.  I am practicing letting go of that which I cannot control, but this double whammy with Ted and Pam is a tough one.  All I can do is pray for her, and I do that on and off all day.  Please pray for her as well.

Before Pam called this morning, I was working on another post:

What if, before I was born, my soul chose the life I have.  My father, mother, sister and brother.  My friends.  Every single choice I made before and after my birth.  Including my NF.   What was my soul hoping to achieve?  To learn?  To experience?  And why is pain such a big part of it?  Pain and all the other physical challenges.  People often call them gifts disguised as problems.  Sometimes, I understand that down to my soul and if that’s where these pre-life decisions came from, it’s no surprise that that’s where I’m feeling it.  Maybe the gift is having all this time to ponder those big questions.  Still, if there is a council of angels that helps souls choose a life, they must have been on a coffee break when my soul thought, “Gosh, I wonder what it would be like to have an incurable, painful genetic disorder?”  Or not.

Even when I am scared, worried and in pain, which is most of the time, I still ponder, and I just got a big “Ah ha!” this morning while wondering when this life of mine may be coming to an end.  I know that being jealous of a friend’s death is kind of twisted.   And yet I am.  But that wasn’t my realization.

The realization was if I DID choose this life I must have chosen it for some reason, obviously.  To learn something I may have gotten wrong before, if there is a before.  And if everything I think about is true, isn’t up to me to stay here and learn it, regardless of how I feel about that decision now?   I mean, it wasn’t the ego that chose the life, it was the spirit.  And courting death can’t be good for the spirit/soul.  When I think about ending things myself, the thought right behind that one is “That would be cheating”.   I hate that when that happens.  My mind telling me that this life is all an accident, there was no before, there will be no after, so why not end it now, end the pain?   The battle between body and soul rages on inside of me.  And I get more truculent about it if people start telling me I shouldn’t be thinking that way.  Most of my friends and family don’t say that, however.  But the endless gnawing pain is getting more and more difficult to overcome with meditation, reading, music, movies and sleep.

I read about the world and get even more depressed, more worried, less sure.  I want to make a difference, but I don’t know how.  I want to be a bigger person with a bigger heart.  And when I do pass, I wish never to return.  I hope that’s an option.  I’ve been told by two very spiritual people that it is.  But no one can say for sure, let’s face it.  I’d have to have my spiritual head examined if I said I wanted to come back.  

The pain seems to be moving past the point of tolerance.  My bowels aren’t behaving again (they were for a month or so….with enough Miralax to choke a horse).  I’m wondering if my tolerance for that stuff has past the point of no return.  I hope not.  I’ve lost weight again, though I don’t really care.  I have no appetite and usually have to force myself to eat.  Tolerance for the pain drugs, tolerance for the laxatives.  Are we having fun yet?  And the tingling and numbness are constant now.   My hearing is so bad I don’t know what I’ll do once they tell me what I already know.   And my blood work just came back.  Some things to watch but not treat.  Not that I would.  But knowledge is power, as they say.  

Why do I bother?
I haven’t a clue.
Except that the only way out, is through.


Sunday, April 28, 2013

Goodbye, My Friend

I had not talked to my friend Ted since Easter so I phoned him this morning.  A woman answered and I knew instantly that he was gone.   It was his ex-wife and she told me the news.  He had been sick with pneumonia and in the hospital.  He was septic.  No pain medication was making him comfortable and the family had to keep asking the doctors for more.  They finally switched from morphine to diladid.  His wish was comfort only; DNR, DNI.   He passed last Saturday, April 20th.

I met Ted through the Washington state chapter of NF over 8 years ago….the president of the chapter told me about him being isolated, as I was.  So we emailed each other for a long time, then started calling and eventually met one time….a time I will now cherish.  His sister took some pictures of us and I’m posting one here.  He asked me not to while he was alive.

Ted was the sweetest soul I’ve ever met.  In spite of his many challenges, he had a positive outlook and was always kind to people, even when many were not so kind to him.  I will miss his words of wisdom and encouragement, his soft and sweet voice, his wicked sense of humor and our shared anguish over the pain we were both in.  I look forward to the day my journey here is over and the pain is no more.  Of course, I don’t know for sure the pain will be over, but that is my fervent prayer.

Right now I’m in a state of shock.  I can’t imagine never hearing that voice again.  But I am also happy for him; it is what he has wanted for a very long time.  And the past few months he’s told me he knew it wouldn't be long now.  I think he started to distance himself from me for that reason.

Please, if you can, make a donation to (children’s tumor foundation) in his name.  And say a prayer for Ted Ptak, one of the bravest, strongest, kindest people I’ve had the pleasure to know.

This was Ted's favorite that he has wings, he can get there!
 BTW, the pic of us is eight years old....I've changed.

Thursday, April 25, 2013

Shelter Me

I just watched this documentary called “Shelter Me” on shelter dogs that are trained by inmates to be service dogs.  It was incredibly touching.  Especially the end when they paired the dogs with the people who need them.  There was special emphasis on combat veterans coming home with PTSD and getting one of these dogs.  I was crying, listening to the young vet talk about how he made his first kill at age 20, and by the end of that day he had killed over 40 people.  He was so chocked up, talking about the men, women and children who he either killed or destroyed their lives by destroying their families.  His description of what he hears and sees daily in his head was terrifying to hear.  I can’t imagine.

And also featured was this woman who looked fine, but suffered from disorder that causes her to “drop” or black out.  She needed a dog to get someone to notice if it happened.  She was crying as she said something like “When they see I have a service dog they’ll know I’m not fine” Boy did that hit home for me.  Invisible disorders/diseases are the worst because everyone thinks you’re fine, you could do more than you’re doing, etc.  Not that I should care what strangers think, but it’s hard when you’re in agony and the person in front of you in line is chatting up the cashier, or there is no one to help in a store, or, like today, I had to use the bathroom in a store and the cashier, who was chatting away with some guy, got upset because I repeated three times I needed a bathroom.  I should have just let loose on her floor.  Pam was with me and tried to tell her it was an emergency and I was ill, but she said something like “Well I was talking to someone”  and then someone else came to open the door and looked at me like I had threatened them with an Uzi.

Life is hard enough without having a little understanding.   I need to remind myself of the same thing; you never know what is going on with someone else, why not give them the benefit of the doubt?   And if it turns out that person is just a sour, mean sob, so what?  That’s their problem, not yours.  By being kind to someone, even someone who doesn’t deserve it is more powerful than being a creep all the time, assuming the worst.  Right.  Like I behave that way.  Well, at least I give it some thought, eh?

Pam went for her CAT scan today.  Her chest X-ray came back clear, so that’s good. But she won’t get the results of the MRI or the CAT scan until Monday.  She just keeps working and trying not to fret.  I told her to call me if she needed to talk….I really, really wish I could help her.  I gave her some suggestions on how to get extra help paying for the bills that are coming in.  Like I wrote earlier, she is worse off than me financially and has HMO coverage through work. 

Please, pray for her

I’m in a bit of pain so I’ll sign off……

Tuesday, April 23, 2013


I have been so grateful for the help I get from Pam.  She is an angle and we care a lot about each other.  She brings me flowers and cookies.  I give her food and make sure I thank her while she’s working.  She “mothers” me in some ways though not in a cloying way. That I would not be able to handle.

She went in for an MRI of her liver yesterday.  She has Hepatitis C and has been taking medication for years.  She must do these liver checks, and the last one wasn’t good, hence the MRI.  She just called me.  They are going to be doing a biopsy and they also want to do an X-ray of her lungs to make sure there is no cancer there.  They also are doing another blood draw.  I am not sure what is behind the reasoning of doing the X-ray before they know the results of the biopsy but it doesn’t sound very positive.  I hope I am wrong.   I have been praying for her like crazy.  She is such a love; I don’t want to see her have to face this.  Her son doesn’t drive; they live together and barely scrape by.  She is terrified and I don’t blame her.  She has talked to me about this in a “what if “ kind of way. 

I struggle both physically and financially, but I would be on the street or dead if it wasn’t for my dad.  She doesn’t have that cushion.  She has talked about her fear of being on the street.  She just turned 68 and she works her butt off and in a physical kind of way.  She drags her leg and limps sometimes but tells me it’s nothing to worry about.  She lives in fear that I or one of her other clients will complain about her so she pushes herself harder than she has to with me.  I just hope she doesn’t push too much.  And her life has never been easy.  Harder than most.  She still has a sunny outlook, but she has had challenges as or more difficult than most, including me.

Yesterday, one of my hummingbirds flitted down to Oliver’s level….he was on the inside, hummingbird on the outside.  He kept flitting at eye level for at least a minute to two.  Never seen anything like it.  Oliver’s head was spinning like Regan in The Exorcist.  Poor guy.   Now he’s just yelling at them all.  Its okay, Oliver, I yell sometimes too, just not at hummingbirds.

Thursday, April 18, 2013


Sometimes the pain is so intense all I want is death
Sometimes it drops to a “5” and I can catch my breath
Sometimes the feeling of being buried under concrete overwhelms me
Sometimes when I’m reading a good book, I forget that I’m in agony
Sometimes none of the meds work at all and I am dismal
Sometimes a toke or two or three quiets my crazy tumor oppressed nerves
Sometimes I ask “why” when I know there is no answer
Sometimes I see the suffering of those around me and pray for them
Sometimes I have no appetite because of the pain and my stomach issues
Sometimes I’m hungry and eat my way through the day, bowels be damned
Sometimes the darkness of the abyss calls and I rush to the edge
Sometimes the sun sparkles on my wind chimes, hummingbirds feed and I smile
Sometimes I can’t wait for death and court it like hell
Sometimes those on the other side soothe me with words of wisdom

Like life, death is a state of being.  Sometimes I think I prefer one over the other, even though I don’t recall what the other is like.  But if it means I’m no longer in pain, I’ll take it.

Oh, to be able to hang on to the feeling of letting go.  What a conundrum that one is.

I'd write about the dismal state of affairs with this country, but it only makes the pain worse.

Tuesday, April 9, 2013

Cymbalta No Go

Warning: this is one of my more difficult posts (pain wise) so don’t read it if you think it may upset you

I am in brutal agony today.  The Cymbalta hasn’t made a lick of difference and it’s been almost five weeks.  I called the doc and left a message and they just called back.  I told them I have joint pain in my fingers which I’ve never had and am having a hard time sleeping and I’m so anxious and depressed I’m going mad.  They told me to stop it which surprised  me….I thought there would have been a withdrawal schedule, even though it was a short time.  She initially told me to cut it in half, but it’s a capsule.  Then when I questioned her about just stopping, she told me to take it every other day.  Same as cutting it in half, I guess.  She asked me when my next pain appointment is, but it’s not until July.  And they want to do a brain MRI then too.

I’ve been crying on and off all day; trying to read, trying to write, trying to listen to my relaxation or drumming cd’s; nothing is working.  Writing this takes my mind off it for a little bit, but again, the pain is so bad it’s distracting me from everything else instead of everything else distracting me from the pain.   The tumors in my legs must be growing, they hurt like hell.   And this morning, I was lying down reading and dozed off, which isn’t unusual, except when I came back I felt this weird panic….like I had died for a moment or something. Of course, that isn’t what happen, but it was strange.  I think the pain and the meds had me on overdrive.  I hope that ending the Cymbalta helps with the new symptoms (which I am blaming Cymbalta for; maybe I’m wrong…but the pain isn’t any better so why bother?

And that’s the key question for me right now.  Why bother?  I feel more of a burden than anything else and it’s only going to get worse.  I pray fervently for help of some kind; either for the strength to end it or for the pain to stop.  So far, well you know.  So much for my last post....pain is just pain.   Pffft.

But my dad is moving here and that’s worth staying around for.

Monday, April 8, 2013

My Word is My Bond

I haven’t posted lately because my heart isn’t in it right now.  So far, the Cymbalta hasn’t made that much difference, but I need to give it more time.  It will be four weeks at the end of this week.  That’s a week longer than people told me it would kick in.     I’ve been lying here, recalling things.

Many years ago, I did the est Training.   For those who don’t know what that was (the name was changed a few times and I lost track of its current title, if it’s even around), it’s kind of hard to explain.  Basically, it was two intense weekends and one day in between of “Being Here Now” that was, at the time, a very new and exciting concept.  Much of what I took away with me is now part of the everyday lexicon everywhere.  But at the time?  Intense.  Heavy.  I was involved with it for two years as a volunteer.  Personal responsibility was a big, big theme, as was keeping your word no matter what, unless you have an agreement with the other person to change something.  Good advice.

Anyway, one of the many things that they said all the time was that “Life is empty and meaningless….it’s up to you to fill it”   It took me a while to understand that at the time.  They just always simplified things by banging the tar out of our way of thinking.  I remember meeting a woman at the in-between day training.  Her name was the same as mine, which is why she stuck in my mind.  But beyond that, she was fun.  I was looking forward to seeing her on the next weekend.  So the second weekend arrives, and an hour into the lecture (there were over 200 of us) the facilitator announces that the woman, Sherri, had been killed in a car accident on the way to today’s sessions.  And he added, “So she broke her agreement” and went on with the lecture like “no big deal”.  

I was so outraged my jaw dropped.  I could tell half the room stopped listening and a few walked out (thought they probably didn’t get far…they always had “volunteers” to bring you back…well, not like the mafia, if you wanted to leave you could, but they tried like heck to keep you there) and generally, no one was paying attention anymore.  I finally raised my hand.  He called on me and I rammed into him with all I had, the crowd cheering me on.  I called him disrespectful, outrageous and a bunch of other adjectives.  He let me rant and when I was finished he asked if he could talk now.  I nodded.  Then he said something that has stuck with me for the last 30 years.

He said “What I said was true and I stand by it.  What you are adding to what I said is what is making you mad.  You think I mean to say she’s wrong, or that it’s her fault.  I said no such thing.  All I said is she won’t be keeping her agreement.  And she won’t.  It is or it isn’t, no?”  His words stopped me cold.  I thought about all the zillions of times I do that….add something that isn’t there.  I’ve never been a gossip, but my inner thoughts are often accusatory and wrong.  People do what they do and quite literally, it has nothing to do with anyone else.
For instance, we stop seeing someone (from a romantic interest to a doctor, doesn’t matter) because the person doesn’t fit with who we are or what we want; but it almost never has anything to do with them.  I added “almost” because of the psychopath exception, which is, you must admit, rare.  Unless you watch “Criminal Minds” or one of the myriad of other horrific shows about serial killers, etc. which make it look like they are on every street corner.

Okay…I’m in pain.  And it’s just pain.  It does not mean G-d hates me, or I’m being punished, or it’s Karma, it’s this, it’s that.  IT’S JUST PAIN.  And pain, as Linus (from “Peanuts”) says, hurts.

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