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Wednesday, May 29, 2013


I don’t mean to sound totally neurotic but here goes.  I had a blessedly good day yesterday.  Bowels were bad, but the pain was manageable enough for me to go shopping with Pam for over an hour.  I know for the average bear that’s a very slow day.  For me, it’s someone else’s non-stop action kind of day.  I am grateful for those days but they also remind me of everything  I am missing all the time.  Having a life.  Practicing gratefulness is not an easy thing.  I must constantly remind myself of Serenity Prayer:

“G-d grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”

My dad gets in today and I’ll be saying that prayer quite a bit because of the challenges he and I both face.  He will be living 50 minutes from me and I want him safe.  Which means I don’t want him driving that distance.   We will work out a way to see each other, of that I am sure.  But the truth is, I’m in so much pain most of the time, I can only tolerate and hour or two of someone’s company, regardless of who there are.   But watching movies together when we can manage it will be very, very nice.  And eating, of course!   And here he is, now a Seahawk fan!

Monday, May 27, 2013


It’s been rough.  The pain is through the roof and my gastrointestinal issues are really starting to worry me.  I have so much gas from all the crap I take to insure I evacuate, it’s just horrible.   I don’t know what to do anymore, who to ask, where to go….I’m dizzy from this journey and worn out from fighting for every breath, every moment.  I got new glasses and I think they screwed up because it’s worse than before.  But I don’t have the energy to deal with it. 

I think I have some anxiety about my dad moving here.  Not because he’ll be here; that part is great….it’s that he’s 45 minutes from me and neither of us can drive that far.  Well, he thinks he can, but his legs are horrible and if he loses feeling while he’s driving he could kill himself or someone else.  My sister and brother in law and one of their daughters were here on Sunday.  She’s really worried about it, as am I.  Perhaps that’s adding to my stressful bowel situation and the endless horrific pain.  I use to get a break every once in a while.  Not anymore.  Even my healer told me to go to a doctor if it isn’t better in a week.  That was two weeks ago.  I see her again on Wednesday but will hopefully see the doctor before then.  Of course, it’s Memorial Day so they are not open.  Not to put too fine a point on it, but this is day four with runaway stools.  I even backed way off on Miralax….got to be stress.

When I get like this, I like to look up stories about people with great challenges who face them with great courage.  Aimee Copeland, for example.  She’s the woman who lost both her hands, one leg and the other foot in a zip line accident.  She fell, cut herself and got a flesh eating disease.  I just read where she was fitted with bionic hands!!  They were donated to her from the company because her insurance didn’t cover it.  I’ve heard an interview with her…she seems like one of the bravest people around.  This happen over a year ago and I was wondering how she was doing so I looked it up.  Amazing.

It’s true the whole planet is suffering mightily right now.  Challenges abound for everyone except the super-rich and healthy.  I don’t look at the news much because it takes me down further.  But I know I’m hardly alone when it comes to suffering.  And suffering is somewhat of a choice.  We can’t choose what happens to us in life (mostly) but we can choose how to respond to the challenges.

That being stated, I’m tired of being sick and tired.

Tuesday, May 21, 2013

One Square Inch

I had the television on this weekend and a commercial came on showing a young, beautiful woman dancing around while she applied make-up and practiced different ways to put her hair up, making kissing sounds in the mirror, etc.  This vast darkness came over me as I thought about all I have missed out of life.  Like having one. Yes, in my twenties I had some fun and I’m grateful for that.  But I always knew my NF would get me eventually and my life would change dramatically.  So I took very few risks with career and men but not, thankfully, with friends.  Those I made and kept (well, life changes and people move on but I do have lifelong friends).

It is so easy to “go dark” when that happens.  And I’m sure it happens to a lot of able- bodied women (and men) when they see what their lives are “suppose” to look like; endless happiness and beauty to spare.  The genetic and monetary lottery.   It is beyond depressing for many reasons.  The world is running on empty but you gotta look and feel good, right?  No wonder this planet is in such bad shape.

I started thinking about what kind of shape I was in just a few years ago and it startles me so when I realize I was in pain, but driving and able to take care of myself without any help.  Yes, I was drugged and feeling crappy, but it wasn’t anywhere near as bad as it is now.  With each day, I see changes….some tiny, some big but they are there.  The tumors in my legs are getting huge and hurt like heck.  I can’t wear anything but very loose fitting sweatpants when it’s cold and loose fitting light weight slip on pants when it’s warm.  The tumors on the outside of my body are multiplying like bunnies only not as cute.  They are everywhere; on my face, my hands, my arms, legs, feet and head.  I think about other people who notice a skin lesion of some kind and get freaked out.   I don’t have one square inch of skin untouched by NF.  Not One. Square. Inch.  I’m getting headaches from the tumors in my head.  I’m not writing this to complain, but to journal my journey through this labyrinth that is NF.  Dark, scary, and no way out, only small corners of time to crawl into for respite.

But oh, how much better I have it than most; it’s difficult to hold that in one’s mind when the pain is beyond measure, but it does help put things into perspective if you can.  And the only way I know how to do that is to give thanks for everything good that comes my way.  Like food, shelter, access to medicine, friends, family and last but hardly least, Oliver.  The beast with the big mouth.  He’s started waking me up in the middle of the night by pouncing and screaming for treats.  I am nipping that by giving him less treats during the day.   That’ll show ‘em.

Friday, May 17, 2013

Appreciate the Petals

Pam was here today and put together the most beautiful bouquet of flowers.  When it warms up a bit in Seattle, they come out in a burst of beautiful pinks, purples and reds.  Rhododendrons, roses and a bunch of other blossoms whose names I do not know.  I only know they are beautiful.   And now I get to look at them from my couch.  Normally, I don’t like picking them because I think we need to let them be there for the hummingbirds, the bees and all else that makes nature, nature.   I just don’t get outside much so that’s my excuse.

Today isn’t great, but it isn’t horrible.  About a 7 on the pain scale.  Such is life.  Maybe if I thought of the tumors as beautiful flowers that want nothing but to bring peace and tranquility to my heart, mind and soul the pain would lessen.   Sometimes I have this fantasy that someone from the future or maybe from an alternate universe will appear out of nowhere and heal me.  It happens a lot when I close my eyes and meditate or do my drumming exercise.  I haven’t done that for a while; it’s probably time.

When things pile up on you like the death of a loved one on top of a bunch of “gnats” all at once, it’s hard to access that place of peace.  At least it is hard for me.  I get distracted, I have mini panic attacks, my heart races, I can’t calm down, my pain shoots up through the roof and bursts into flames and the world around me is spinning out of control.  You know, like that.   It’s not like that at the moment, but I am in a lot of pain.  Must meditate today.

I got word this morning that a cousin of mine passed away from cancer.  She was in her mid 50’s.  Sadly, her father AND brother died within 90 days of each other, also of cancer, about 40 years ago.  And right now, her mother has it.  These are the kind of things I can’t get my mind around.   How can all these things happen to one family?  I start thinking about fairness, which doesn’t exist in reality….we just want it to so we make rules and hope people don’t break them.  Because the randomness of life drives us crazy so we need to find fairness where we can.  My heart is with you right now, even though we haven’t seen each other for many, many years.  At least 30.  But you never forget some people.

In the meantime, I am most grateful to G-d for making Pam’s journey manageable for now, and hopefully, for always.  She has had a rough life and deserves a break.  It always seems like the best people get the most challenges.  Why is that?  Are the challenges the thing that makes people strong, thoughtful, kind and empathetic?  That of course, is the opportunity.   The lemons can make you angry, or you can make lemonade, right?   There are days I’d like to throw the whole damn pitcher of lemonade at the first person I see.  There are other days when I add a bit of sugar and drink it while eating a cookie.

Wish I could do the positive thing every time.  Oh well.

Thursday, May 16, 2013

Good News (so far)

Pam just called me from the doctor’s office….they are sending her to the University of Washington and because the lesion is small and centralized, they are going to do radiation and so far, that’s all!!!  They are hoping that works…one step at a time, right?  She can’t get in for a few weeks but they said it should not interfere with her work or anything else!

I am so happy.  Thanks to all who prayed for her, and thought about her.  It means a lot to both of us and her family.

Wednesday, May 15, 2013

Care for the Caregiver

I am often not very good at compartmentalizing.   It’s one thing to feel empathy for someone else and offering to do what you can to help, and another thing to take on another’s problems to the point of making yourself sick or worsening something that’s already there.  My stomach and pain issues intensify by 10 when I worry too much and unfortunately, I am very good at worrying.

Pam’s news wasn’t good; it’s cancer.  But she is handling it very well and goes to the doctor tomorrow to see what the options are.  I gave her a blank journal I had that I have never used and told her to write her questions to the doctor in it, and then journal her journey.

I saw my healer today and for the first time, she was unable to move some energy around my stomach and back.  Also for the first time, she said if it didn’t clear up by next week, to see my doctor.  That kind of scares me.  She’s not anti-western medicine; she’s very much into balancing the two.  But my stomach and back and hip are all very painful and it’s harder and harder to empty my bowels even with the laxatives.  She said Miralax should not cause gas but something is causing it. 

I cried my eyes out when I got home from there.  Pam was here, cleaning, and I went into my room to lie down.  I never lay on my bed during the day.  Well, almost never.  I sobbed, I prayed, I bargained.  I begged to be released.  And in between I got glimpses of the fact that this is my life and I best make the most of it, even if it feels like nothing good ever happens in it.  I want to hear about my friend’s ivies, their travels, their work, etc.  And I know it’s far from being all good.  But sometimes it’s hard to hear and I feel selfish.  I want to be at my sisters when she has a party for her daughter’s high school graduation, but I doubt I’ll be able to go.  I want to be able to go see my dad a few times a week after he moves here, but I can’t drive.  He was going to give up driving but has since changed his mind….because of me.  He wants to be able to come see me, and he is in bad shape physically too.  Spinal stenosis.  I want to see him but it’s a 40 minute drive for heaven’s sake.  And that’s in good traffic.

Pam used to talk all the time about how you would “think by now” there would be something out there to deal with the kind of pain I live in.  Well, there is stuff out there, but prescribing it is a problem.   I don’t think doctors keep from prescribing it because they are afraid it will kill the patient (from a personal point of view); they are afraid of being sued by the family.   Even when Ted was dying they weren’t giving him enough although he asked for comfort care.  Literally, it was the night before he passed that they finally did something that made a difference.  Unreal.  “First do no harm” includes not keeping people in agony when you can ease their suffering.

It is my humble opinion that the bottom line to fixing this healthcare stuff IS the bottom line.  That being, there is no money in wellness.  Not the kind of money there is in keeping people sick.  Keeping them in pain.  Keeping them wanting for more.  Now there’s the ticket.

Monday, May 13, 2013


I’ve been thinking of the word “pentimento” lately.  That’s what art historians call finding a painting under another painting….the artist having painted over it.  Or another artist, I guess.  Anyway, I think we are all pentimentos.  Layer upon layer of everything that makes us human, or makes us think we are.   Sometimes we think our “good” qualities cover our “bad” and sometimes it’s the other way around.  All depending on how we interpret those thoughts.  And I put good and bad in quotes because I hate labeling behaviors and the things that happen to us in life.

I saw this movie where one of the characters was wearing an apron that read “shitake happens”.  I laughed out loud.  Shitake happens to us all the time.  All. The. Time.   Two weeks ago I was having that awful time because one challenge after the next was coming at me like tennis balls from a machine.  Then, after the 10th “challenge” I noticed the base I keep my phone in wasn’t working right.  I almost flew into a rage and then caught myself and started laughing.  I realized these things would keep happening until I figured out a way to deal with it without histrionics.  True, I had every “right” to go ballistic given all that was happening but that right was just causing me more pain.  Ouch.  Giving yourself the “right” to feel bad is kind of sadistic.  Why I must learn that over and over again ad nauseum I’ll never know.  Regardless of your life circumstances, you have to pay attention, even if it feels wholly unfair.  Because fair and unfair don’t exist.  Things just are the way they are, or as people like to say, “It is what it is” And it is.  What it is. 

The pain is bad today without the contributing drama.  Mornings are the worst.  My legs are on fire, my bowels are a mess and if I look to far afield panic sets in.  That’s why I can only take a minute at a time.  Funny, that.  I mean, one can’t possibly take more than a minute at a time (quite literally, of course) but we bandy about that saying like we are all in recovery.  Maybe we are.  Life is like being in recovery of our spiritual self.

Pam hears back from the doctor today.  She stopped by both Saturday and Sunday just to say hello.  I think she’s starting to accept the very real possibility the news won’t be good.  I wish I could help her in some way.  She tells me I have been a great help to her, but I wish I could help financially as well.  Life is so frigging unfair.  I know no one said it was fair, but why is it that the kindest people I know are challenged in ways I wouldn’t wish on anyone, including every politician that rules with his/her bank account.  Then again, it’s those very challenges that make us who we are, providing we learn from them.

There isn’t a square inch of me that doesn’t hurt.  Guess there is more to learn.  Sigh.

Thursday, May 9, 2013


I’ve been having panic attacks when I wake up.  It settles after a bit, but I have to work on reminding myself I’m okay.  One minute at a time is about all any of us can do, right?  The pain, the bowel issues and everything else is manageable and unmanageable in cycles.  I just have to wait out the really bad ones and enjoy the tolerable ones.   Today the pain is pretty bad.

I watched this episode on NOVA about snake and spider venom and how the venom from one type of snake (forgot which one) is 100 times more powerful than morphine to treat pain.  I have no idea why it isn’t used (when processed for that use, of course).   I know that there is some really nasty snake venom out there that kills,   Thinking about how little help I get for the pain, I wonder.  I wonder about a lot of things regarding what we do to help people with medical challenges.  The bottom line is that there is no money in making people well.  The entire medical community would not exist if people got well.   Millions and millions of dollars is spent on research, and year after year, all the telethons, marathons and lemonade stands raise money and where does it go?   Even if it what is left after “administrative costs” is actually spent “finding the cure”, once it is found, I think it is purposely handed out in tiny bits, if at all. 

One doesn’t have to look far to find fraud.  Everyone knows someone who has been touched by financial loss these past few years.  And I won’t even get started on our elected officials.  Children.  Each and every one of them.  So it isn’t that much of a stretch to see how and why it’s more profitable to keep people sick.  My heavens, the ads for drugs grow bigger every day.  I barely watch television but I’m shocked by the number of ads for this or that drug….and it takes longer to list the side effects than it does the benefits.  Makes you wonder.  People hear about it, go rushing to their doctor to get the pills, and 10 years later they develop cancer and now the ads for that drug are about lawsuits.  It’s endless.  And destructive.

All I want is to be out of pain.  I want it really, really badly G-d.  I’m so tired of hurting all the time.  Of not being about to run to the library, the grocery store or to an appointment.  I’m tired of the myriad of side effects, the neurogenic bowel and bladder and of not being able to be a participant in life, other than online.  I’m tired of being depressed, of searching for the next “trick” to help me through.  I’m just plain tired.

Pam is back today.  Doesn’t know anything yet.  But I’m making sure she doesn’t do much for me today except ferry me around and run to the store or the library for me.  I do have to go with her to get my glasses.  But I cancelled my hearing test today and I’m glad I did because I hurt so badly.  It’s re-scheduled.   And in a few weeks, my dad will be here!!!  At least I have that to look forward to!!!

Sunday, May 5, 2013

Old Home, New Home

Last week was one of those over the top challenging weeks.  The gnats were out in full force; pain, bowel issues and two calls about having to do two different review updates for assistance….which I just did.  And a bunch of little stuff that by itself I can handle without histrionics, but everything at once was too much for the fragility that often accompanies grief.   When I saw my healer on Wednesday, she did some grief work.  I actually did feel a lift for a few days but I was blue again Saturday…and frustrated about my gastrointestinal issues.  Trying not to turn it into something tragic by making up all the “what if’s” when I know this comes and goes and will pass.   No pun intended.

On the plus side, its 70 degrees and gorgeous outside…will be for the next few days.  I want so badly to take a walk.  But, the deck door is open, I changed the hummingbird feeder, Oliver is wandering in and out and all is well, right?  Breathe, dang it!  I do thank G-d for the change in weather.  The rain is depressing after six or seven months.  Speaking of depressing, it SNOWED in Minneapolis on May 3rd.   My dad is so ready to leave there…in just a few weeks now!  I can’t wait!

Okay, here is something kind of cosmically funny.  In 1975 I backpacked across the country and Canada for about three months.  While in Seattle (I lived in Minnesota at the time) I fell in love with the city and swore I would move there.  Well, life took over; I bought a house and was living my life.  Unhappily so.   Several years pass and the Universe gives me a little push...  my brother moved to Seattle for a business opportunity.  A little over three years later I flew to Seattle to visit him.  I had been avoiding that because I knew I'd have to bite the bullet and move.  I came home,  stuck a “For Sale” sign in my yard and was driving to Seattle in six months.   Ten years later my oldest friend moved here.  A year after that, my sister’s husband passed away and she moved here with her two girls  (they were living in NM at the time). Now my dad will be here.   My mom passed away in 2002.  Read "Unreliable Scoreboards"  about how she gave me the push I needed to move.  I have a search engine at the top of my blog to find it.

In May of 1986, while crossing  I-90 and finally heading into Seattle, something overwhelmed me in my chest and I heard this clear “I’m Home” voice in my head.  It was weird.  And now it seems, it’s come full circle.  Home.  I’ve been here 27 years this month.

Life.  You gotta pay attention.  Never know what you’ll learn
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