Wednesday, March 14, 2018



sliding down a slope I can re-climb.

The polymyositis is kicking my ass.

A few years ago the changes were minor and came and went.  Now there here and worsening at a frightening pace.

My thigh muscles are so bad that I can't get up from the floor or a squat without having something to pull my self up with. My arms are worsening also.

You can't see the muscle damage, you can't see the muscle wasting.

I walk close to the walls. I fall into them like a drunken sailor. Without them I would fall on a daily basis. My left thigh muscle is wasted and unresponsive. I do anything physical and its hours of muscle weakness.

All I did today was slowly and with lots of breaks, clean my daughters room and wash the house windows.

My arms are weak and floppy tonight. I have no strength in them.

My biggest enemy in all this is fear.

Fear of the unknown.

But it's not unknown. I've worked in long term care for 35 years. I KNOW MY FATE. I KNOW WHAT WILL HAPPEN WHEN MY MUSCLE TRAP ME IN A WHEEL CHAIR.



and I don't wanna go there.

My children are struggling to understand my illness.  They can't see it. Polymyositis is an invisible illness. I look okay on the outside.

my heart breaks and the fear creeps in.

I took care of a lady with multiple sclerosis. Another muscular disease. She had scars on her thighs. She told me when she first got sick, her daughter thought she was faking and stabbed her in the thighs with forks.

My kids can't understand that by the time they have their own kids, Grandma Pee won't be able to hold them. Hell if they had babies right now, I couldn't hold them.

My labs are changing too. So much so they increased my prednisone.

My ability level has deceased too. So much so I had to tell my employer I needed to modify my work.

That broke me. Broke me.

Once you loose things, you don't get them back.

And I inch closer to that wheel chair.

'Cept it no longer feels like I am inching toward that looming wheel chair.

Now days it feels like I'm tumbling head over heals down a steep cliff and the chair is there waiting for me to cartwheel into it. This is happening a lot faster then I am prepared for.

I'm frightened.


sliding down a slope I can re-climb.

Tuesday, March 13, 2018

Eating with little feet

My son and I ditched the other two sick family members and went out to Denny's yesterday.

I enjoy it when my son spends time with me. We get into deep discussions and I get to see into the mind of this amazing human.

After we order he looks around and comments, "I think this is the first time its just been me and you at Denny's alone."

I smile as wave after wave of nostalgia washes through my mind. "No." I say. "We have been to Denny's many, many times, just the two of us."

He cocked his head and gave me a quizzical look as he searched his memory.

"You would usually get under the table and drive your hot wheels. I ate quite a few meals with your little feet across from me and you laid on the seat playing. I can still recall the looks of people who would glance over and see me talking to the empty booth."

He grinned sheepily. "I kinda remember that now."

It's a really shame, he doesn't remember all the time we spent together, and all the things we did. We had so much fun. Just him and I.

Such a little light he was, as I showed him this great big world and all its wonders.

Tuesday, February 27, 2018

I wonder....

My daughter walks home from school and lets herself in with her key.

I am here 99% of the time, so its a moot point. She just likes the independence of doing this.

For no reason she sometimes doesn't put her key back in her back pack. Like once a month or so.

As I found her key under stuff this morning, I had a crazy thought.

Maybe this is her generations idea of "running away from home"?

Wednesday, February 14, 2018


Me: planning a busy day of catching up on things I need to cross of my dordie list.

Big red tail hawk swooping down and flying over the car this morning: you are needed else where today

Me: I've got places to be, things to do. Ignores the call.

(a few blocks later)

Big crow swoops down and flies over the car: you are being called, listen.

Me: sets my list aside and picks up my lantern. 

...Holds it up....

Stills my heart and shuts my eyes.

Be aware I am a  reluctant guardian . I am no magical being...I am just a fellow traveler, on the path with you. I am lost in the dark forest with you, I am just further down the trail.

While I am mostly made of stone. This old guardian still refuses to obey and be still. I slowly climb down from my stone pedestal. My crumbly joints grind as my stones shift. My lantern light wobbles and sways and paws at the darkness around me.


two steps

I take before the stones slid off  and I am there vulnerable and old. I don't run so fast any longer. I am coming, I will find you.

I know there is no light where you are now, so I blow out my lantern.

I can hear the red tears. I know they're there, I know they are saying all the things you cannot.

I head in that direction.

Its not long before I stumble and crash hard to my knees. I touch the rich earth and still my heart again. 

I know it's close. I spread out my hands and begin feeling for it. It doesn't take long.

the forest floor abruptly ends and a crumbling edge falls off into even deeper darkness.

I take a deep breath and pull myself in.

The roots and rocks grab at me as I fall in.

With a dusty thud I land next to you.

I sit up and wait until the last of the disturbed ground stops plinking down on my head.

"Why did you come?" you ask.

"Because, no one came for me. I know what is like to be hurting and alone."


the teeny match flame add little light to the dark hole. I set it to the lantern wick.

In the pale light I hold out my hand.

"How did you know where I was?" you ask ignoring my extended hand.

"Been lost a time or two thousand my self. I know the feeling of being so alone that you think your a lost alien that doesn't belong on this planet. That your the last survivor of a ancient race that has died out. That your so invisible that no one sees you...most of all, I know how comforting pain can be. I've hidden more times then I can count in the pain."

I scoot the lantern closer to you.

" I feel..." your words falter, and you slid your face into the crook of your arm.

"Like life just kicked the shit outta you again?"

I see your head bob slightly.

"Do you know what to do when your on the ground?"

Your eyes peak up over your arm.

"You have two choices. You get up. Or you grow roots. Some of us are walkers, some of us are flyers, some of us are swimmers, some of us are one leggeds."

Your eyebrows question  me.

"One leggeds are trees. They only have one leg."

Your face appears, "Are you saying I am a tree? I should grow roots?"

"You are a pine cone. Young and on a journey. Your mother tree dropped you from her branches like a grenade. Life kicked you around and stomped on you and tries to crush you, but you have held onto your seeds and spikes. Everyone may over look you laying there on the ground, not realizing the power you have. The strength in your form and the magic you hold."

"Magic?" You interrupt.

"Little one, you have a whole forest in you. Your a portable magic grenade just waiting to deploy your seeds and take root. Your not suppose to fit in by conforming...your suppose to grow your own beautiful motherfuckin forest so others can come to it."

You reach out and take my hand. "how do I do that?"

I squeeze your hand. "All seeds need water." I touch your torn up skin. "start with never apologizing for surviving. For doing what you have to do to keep living." 

I let go of your hand, and you feel a weight still and look down. You have a lantern in your hand. Its little flame is dancing.

I reach over and again touch your torn up skin. "Put this in your heart and pound it into your head....your not crazy for doing this...your just in pain."

"So much shit raining down on me..." you sob.

I  turn and begin to claw my way out of the hole. Once out I learn back over and say softly. "Change how you see things. Your a pinecone. It's not a shit storm...its fertilizer. Use it to grow."

You smile through the tears.

"Not tears, welcomed water. You have a journey before you, but I promise one day my little pinecone, your beautiful canopy will sway in the wind as the sun kisses you and so many will cherish the life you give... Incase no one told you, all one leggeds begin their journeys in the darkness struggling to reach the sunlight."

Friday, February 2, 2018

one lick

I can't believe I've never blogged this! wow!

remember my poem By Fives?

By Fives

I was born on the kitchen table
tumbled down sixteen stairs
attempted suicide
and placed second in a beauty pageant
all before I turned five.

I've eaten yellow snow on a dare
snorted grape soda up my nose
melted army men on the stove
learned the secret to catching lightning
got lost in Disney Land
watched three of my brothers die
and froze my tongue to a stop sign pole
all before I turned ten.

I really did.

Here is the proof.

look carefully at the pole to my right. That's dark patch is my frozen blood.

To the left of the pole is Marlene. The one who ran for my mother who used hot water to unstick me. I had asked her to bring me back a knife. I have always wondered what I would have done if she had LOL.

The ice crystals were so pretty on the pole. I was staring at them and admiring there sparkly delicate patterns, when I could resist no longer and I licked them.

again...I've lived a pretty interesting life for someone so boring.

Thursday, February 1, 2018

*TRIGGER* I want to push the reset button.

 **** I am pissed off and angry and in no mood to pull my punches *** as in your going to get raw, unfiltered sewage from the depth of my soul tonight.

New readers, Get some popcorn, and pull up a comfortable chair. I've been told my temper tantrums/pity parties are one hell of a show.


So my CK lab took a hellofajump.

CK: 337
Normal range: 30 - 223
(This lab shows muscle damage.) I have never been over 251.

There is no physical reason for this to have happened....its the polymyositis flaring, or the prednisone failing....or life cold cocking me one across the chops to teach me a lesson.

"how dare you try to heal your broken body? how dare you look up and think you can remove any of the pain chains I have draped over your shoulders?" Doubles up fist, and reaches back...

POW. When you gunna listen and just stay down? why do you keep getting up? give up the fight.

That CK level has FUCK YOU stamped all over it.

As expected the rheumatologist's office called today about my elevated CK.
He want to either increase my prednisone or add in some chemotherapy medications. Chemotherapy medications with side effects like: "Lymphomas and leukemias have been associated with this drug", CANCER is one hell of a side effect there Doc.

The other options are some drugs used to prevent organ rejection in transplant recipients.

Of the three poisonous prison shanks offered  to me...increasing my prednisone is the lesser of the evils. 
I say that as I am sitting here struggling to see the screen through blurry vison caused by the prednisone.


take medications that will kill me

or stop them and allow the polymyositis to cripple me. 

My choices in all this really is....just how fast do you wanna die?....and how painful do you want it to be?

The other day at work I was having trouble talking. I laughed it off, blaming it on being tired and working an extra shift. In reality that symptom has been showing up all month.

Polymyositis can affect swallowing and speech by weakening the throat muscles.

The muscle weakness has now jumped from my extremities to my trunk.

sobering thoughts.

As much as I would like to blow off that CK and do nothing. I have to do something.

and can you guess what I wanna do?

yup.....burn the fucking shit out of my self.

I want to burn to numb my self and to run from the horrific choices facing me. Run from a diagnosis I never wanted in the first place.

Rewind. back to my childhood.
Back, waaaaaay back to the first time Life biffed me off my feet and trampled me into the dirt.

I should have stayed down. Let that bastard win.

why did I get up? 

why DO I get up?

Why when Life punches me do I swing back?




HAVE THAT CHANCE. life? are we clear on that? I get to end my life NOT YOU.

I so wanted to buy that pretty package of lighters today at the store. My soul crying out to be put out of its misery with a self inflicted violence spree. 

I know I am going to burn my self.

I've know it since 12-30-17. Been fighting the urges. Been doing okay with handling it. 

but this is pushing me in all the wrong directions. Clouding my resolve to not injure.

Burning would, in effect, push my mental "reset button."

numb me out. Blank out all my worries. Ease me into a calming dissociate high. Escaping to the plane in my mind that is so light all evil sinks out of it.

hurting me is a whole lot healthier then allowing my mind to rage unchecked.

as in a little burn is a lot easier to deal with then me raging to a point I remove a limb or off my selves just to escape the mental pain.



 I told the doctors office to blow off, I wasn't going to add any of those drugs or increase the prednisone.

you know what I am going to do tomorrow?

get up. (why do I always get up? just once I'ld to stay down when life biffs me off the chair

call the rheumatologist back and see just how high he wants to jump my prednisone too.

then go swallow that wretched dose.

then burn until I am so numb I don't care.

I mean, get on with my day.

Thursday, January 11, 2018


My mysterious Once-ler.

I found her where the grickle-grass grows at the far end of town.

Perhaps if you put 15 cents and a nail, and the shell of a great-great-great grandfather snail in her tin pail she will tell you a story.