Wednesday, April 30, 2014

Retro thunkins - the list grows

As a parent of a child with Cerebral Palsy you discover you have a list. A list of people that you will one day realize you need to invent/build and use a time machine on to travel back in time and "thunk" then soundly on the head for the stuff they did.

While I am not the birth mother of KSS I was there for most all of her appointments and doc visits, so I got to witness a lot of crap. As her protector and advocate I feel I have the right to dole out some thunkins.

When KSS was 3 years old she went to an  intake evaluation for Occupation Therapy. That day was the trifecta of crass people and will be my first stop on my retro-thunkin tour.

A well dressed man approached us and asked KSS's mother, "I'm doing a research project on CP, Did you use crank during your pregnancy?"

THUNK. Dude you get that thunk right between the eyes for your question. Research or not that was uncalled for.

Next the technician handed my 3 year old scissors and a sheet of paper and asked her to cut a line.

KSS picked up the scissors and looked at them.

The tech made a smurky comment that hinted that KSS must be mentally retarded because she didn't know what to do.

At this point I had had enough and stepped in and spoke up. "She's THREE! She has never seen scissors let alone cut anything with them!"

I took the scissors and snipped the paper and then helped KSS to do it. Then I laid both the paper and scissors back on the table and asked KSS to cut the paper again.

Which she tried to do.

The tech eyeballed her and made a clicking sound with her lips and marked her paper with a heavy stroke.

THUNK.

No wait, I just remembered one small detail of that event. Those weren't kid scissors they were big ones.

Lady, you get and extra THUNKIN for that!

The next boob that came in to eval her, was firing off a slew of questions then not waiting for her to answer. She kept looking to Mother, Grandma and me as if saying "OMG your kids a turnip." with her eyes.

THUNK.

As we left that appointment I said, "I can't wait to get home so I can shower, they left me feeling icky, bleah..."

Grandma nodded and said "I should go back in there and say something, that was rude."

But even with all that I feel there is one person in particular that is more deserving of a retro thinkin.

He was the orthopedic surgeon who straightened her left leg. Initially the surgeon planned to straighten both her legs. But at the last min they only did one.

After it was all over and they were doing a gait re-check he watched her walk down and back and he turned to us.

"That turned out beautiful. We should have done both legs."

Being at the mercy of the doctors and their decisions about KSS and her treatment plan. It never occurred to us to press further and ask to have the other one done. We just assumed they knew what there were doing.

Well, guess what. I got a call two months ago from KSS. Its now been ~20 years since that day. The leg they didn't operate on is now deteriorated to a point of needing surgery. A life time of walking on her crooked leg has stressed the ankle  and deteriorated the joint.

The other one they straighten is fine. She is facing complex orthopedic surgery to try to salvage her foot and ability to walk.

We never looked this far into the future. We didn't have the knowledge or experience to see this coming. As young parents of a CP child, we were only concerned with the right here and now. It never occurred to us to say, "hey doc, how is this going to affect her ankle stability in 20 years?"

We fought so hard to help her to walk. That was the focus. Now she is facing that again.

So a mighty THUNK to her surgeon. "Yeah dude, why DIDN'T you do both legs?....and more to it lets DO IT, schedule the surgery so twenty years from now my child will not have to suffer from this wishy-washy-ness"

And why oh why was there not a course for parents on the future possible complications that can arise from the diagnosis of CP?

You know after learning all this info about childhood CP and the general working of Shiners hospital the hard way, I often thought if I had the time I would set up a program to help inexperienced parents navigate this stuff in the early days. To have a support person to go with them to the intake eval at the hospital who understand what it feels like to be wearing those shoes of uncertainty.

I remember when KSS was a teenager she happened to meet a woman with CP at a restaurant. The two started talking and it was fascinating to hear the questions KSS asked her. Questions we would never be able to answer about living with CP.

The one that surprised me was the first one out of her mouth. KSS asked her, "Does everything smell really intense to you?"

I thought, what an odd question.

Then the lady's eyes lit up and she said "YES! everyone tells me I am being oversensitive to small smells but to me they are very intense!"

Which answered a lot of questions about what I perceived as odd behaviors in KSS as a child. Which also means I too deserve a...

THUNK.

For the time she was smelling each and every rose at the park, and I told her. "KSS they all smell the same! lets go!"

I would have never guessed that while CP is by definition brain damage, that it might have also enhanced the brain in areas no one ever looked at.

Oh wait I just remembered another person deserving of a retro thunkin.

The boob who cut off her thigh high cast. The instant the cast saw touched the cast KSS freaked the hell out and started screaming in pain.

They stopped the saw and told her. "It doesn't' hurt. Now hold real still."

She continued to scream as they cut the cast down her leg.

The tech kept repeating loudly between her screams "It doesn't hurt!"

When they finished and cracked the cast back, fresh blood filled up the cast.

sigh.

The exposed pins in her ankle were casted into the cast. As in each time the saw jiggled the cast, it jiggled the pins that went though her ankle into her bones.

Um.

THUNK!!!! oh stop your whining that doesn't hurt! THUNK!!!! THUNK!!!! THUNK!!!! THUNK!!!! THUNK!!!! THUNK!!!!

Tuesday, April 29, 2014

The Neccos vampire

"How are you this morning?" He asks in a polite voice.

She shrugs her thin shoulders and fidgets with her watch band.

He knows she won't reply in words, but it has become a routine long established, and he is afraid to deviate from it.

A can of warm RC cola and a package of Necco wafer. Her usual purchases. They never vary. Some days he wonders why he bothers to scan them. "Ninety-eight cents" He smiles at her, trying to make eye contact.

Her dark blue eyes like deceiving pools of calm water hiding some lurking danger beneath the surface, stare vacantly towards the front of the store. With a curt flick of her wrist she tosses a crumpled up bill his direction.

There is blood on her faded grey sweat shirt again. Evidence supporting his vampire theory. He knows the white skirt and nursing shoes she wears are a disguise. Nurse are caring, compassionate and she is sullen and distant.

As he counts out her change into her outstretched palm his eyes naturally fall on the three jagged scars that run across her thin wrist. When he has first seen them he had been so taken back, that he had to count her change twice before he got it right. An exotic sultan perhaps had in slaved her and broke her spirit.

Sliding the can into a sack he noticed that she was paler than usual. He figured that she worked in some mad scientists laboratory, helping with diabolical experiences. Perhaps a caustic chemical injected into her larynx robbed her of her speech, and she had been instructed a Necco an hour would prevent her wind pipe from growing shut.

She left the counter leaving behind a still shadow of silence.

He watched her go, eternally intrigued by her.

Twelve hours later he shifted from sore foot to sore foot, grumbling silently under his plastic smile. His patience for the public worn thin. He stopped making eye contact and tiredly counted out change to bodiless hands.

"Four and five. Thank you for shopping with us." He forced himself to stay, the surliness coming though despite his efforts to sound cheery.

Glancing at his watch he saw that he only had six minutes remaining before he could peel off his phony Saran wrapping and become himself again.

Reaching for the next item to be scanned he found a can of warm RC in his hand. He watched as the Necco's rolled a few inches and stop.

Glancing up he is shocked to find himself staring into familiar blue eyes. These eyes are different somehow....almost alive.

Perhaps this is a twin to the morning one, grown in a petri dish.

He tests his theory.

"Strange to see you this time of night." he says scanning the soda.

A large smile warms her face. "Yeah, I suppose it is. Are you working a double or changing shifts?"

Well damn, there goes his mute theory. "A double" he sighs,

"Doubles are killers on the body" she sympathizes.

He nods in agreement and scans the Neccos. "Ninety-eight cents." He smiles for real.

She hands him a dollar bill.

"Ninety-nine and one." He counts while gazing at the scars, almost disappointed in discovering that a sultan hadn't broken her spirit. Why she seemed to be fairly normal, average.

'Briar-Oaks Convalescent Home' is printed in bold letters on her name badge. He stares at it as he hands over the sack. "Thank you for shopping with us." he says as his voice jelling back into the forced cheerful sound.

Again she smiles, "see ya!"

As he watched her walk out. The game was over. He could see no point in playing any longer. She was just ....a mortal who worked in a nursing home. Not a spy or mutant experiment or relocated government witness, not even a vampire.  Disappointed, he shook his head.

Though tired eyes the next morning He saw the can of RC and Neccos on the counter. "Howjur night go?" he asked with a wistful ping in his heart for the spoiled game.

She shrugged her shoulders and fidgets with her watch band, Her eyes deep and shut off are gazing towards the parking lot. She flicks the crumpled bill his direction.

His heart skipped a beat, suddenly intrigued again. What could possibly occur night after night inside the wall of Brier-Oaks, to remove all traces of humanity from her. A smile snaked across his face.

Perhaps, Brier-Oaks was a nursing home for vampires, or aliens...or...

********************************************************************************

Back story:
This is actually a rough draft of a character sketch for my college writing class in 1991. The soda/Necco price really dates it.

The assignment was to describe yourself without just listing your physical features. I wrote this then a different one called DMV that I turned in as my finished project.

This story is based on a actual event. After a particularly stressful night at work me and two co-workers hit up the min-mart on the way home. I looked every bit the description in the story. We were all giddy and rummy from no sleep. I bought a warm can of RC and neccos. The cashier was eying me up and pointed to my name tag and asked me how to pronounce my name.

One co-worker, butted in and said "Oh, she can't talk, she's got no tongue."

The other piped right up and added, "She has to eat an Necco an hour to soak up all her saliva."

LOL!

Saturday, April 26, 2014

Our new tree's birthday story

After the adventures we had with Christmas Tree I wasn't sure there was a tree out there with big enough roots to fill his roots.

I knew when the time was right the next tree would come into our lives.  Much like cats, trees will find you when there ready to come live with you.

Wednesday I saw a small note in the paper: "Free seedlings at the grange on Friday."

Might as well have read "Young tree seedling waiting for the serial plant killer to come get it."

Cause that is all my heart heard.

So with the kids in tow I headed down on Friday to meet our new tree.

When they pulled him from the bucket and we got a look at him. My daughter exclaimed "There giving us a STICK?"

My soul bust up into hysterics. Yup. This is the right tree for us.


 
 
I knew right away it was a boy. You have to have BALLS to be brave enough to come home with the likes of us.
 
 
As we walked back out to the truck we started naming him.
 
Hansolo: I want to name it Stickrod
 
Me: I think it wants to be named Stickie-wickie. It looks like a wand with roots.
 
JUR: lets call it Oregon Ash (its type of tree)
 
As we climbed in the truck the first thing it did was poke me in the face, and sealed its middle name.
 
Stickrod-Stickie-Wickie-Pokey-Wokey-Oregon-Ash-Suck-it-Russell
 
The "suck it" a reference to the fact we have just watched multiple seasons of Psych, and have been running that phrase into the ground. Though now we have warped it "STICK IT!"
 
 



As we drove I talked to Stickrod. I filled him in as to who his new family was. My twelve year old son looked at me like I was insane.

"why are you talking to it? it doesn't have a brain or ears. That is just dumb."

We had a brief discussion about carbon dioxide and oxygen and how we help each other.  While he could see the benefit to talking to trees he still mumbled "The words don't mean anything to them, they don't understand them."

I turned back to talking to Stickrod who was laying on the console between us.

"I should tell you I am plant and tree killer..." I started.

JUR grabs Stickrod and moves him away from me and starts talking to him. "Don't listen to her, your safe with us."

"We killed out last tree." I continued.

My son then held his hands over the seedling like he was coving its ears. Bwahahahaaa!



 Hansolo did the honors this time.


Just like her brother she spend some time playing in the dirt.



Not forgetting Stickrod is a baby she got some toys for him.


Big Bro approves.

Now we will wait and see what mischievous fun this little one legged has up its stick.

Friday, April 25, 2014

Treesie Weesie Mo-sam-beesi

Our little Christmas tree died this winter.

It broke my heart. He was an amazing one legged friend and part of our family.

His story began back in December of 2008.

JUR was 6 years old and Hansolo was 2. The DVD of Wall-e came with a certificate to mail off for a free tree. I thought it would be fun to go plant a tree with my son, so I mailed it off.

in a few weeks a cardboard tube showed up with a little soul that make Charlie Brown's Christmas tree look like a magnificent specimen. This little one legged had a malformed forked trunk and looked 1/2 dead.

Now, I am a serial plant killer, I just lack the ability to grown things. Even my cactus's used to die. I'm so bad I can kill silk plants and plastic plants.

I placed this little messed up tree in the dish drainer with the silverware and gave it a drink. I figured that weekend we would plant it if it was still alive.

The next day as I was doing dishes I heard a little voice.

"I want to live here." it said.

I looked at the tree out of the corner of my eye. "Are you crazy! I am a plant killer."

"I don't care, I am choosing to live here." It said.

"Okay, but I warned you."

I called my son into the kitchen. "JUR," I said, pointing to the tree, "This tree has told me where it wants to live. It is choosing to live here with us."

My son jumped up and down and high fived the tree's little branches.

Off to the store for a pot and soil we went. My son enjoyed playing in the dirt, as we planted the tree.

(Photo disclaimer: #1 this is the only baby picture of Christmas tree I could find. #2 that is a friends baby. #3 my floor are never that clean....they would be dirty except I was regularly baby sitting said baby and he would get the broom and sweep up every day LOL)

"Now we need to name it." I said, but already this little ones name was in my heart.

"Let call it Christmas Tree!" smiled my son.

"I think it wants to be named, Treesie Weesie Mo-sam-beesi." I said stroking its little needles.

And that is how our tree came to be called Christmas Tree Treesie Weesie Mo-sam-beesi Russell

Its name longer then it was.

JUR loved to water it. He used to play cars in its dirt while telling it stories. He fed it cheerios and also put cheerios on its needles, because "Mama, it has to get use to being decorated! Its a Christmas tree!"

Suprizingly it was still alive next Christmas and that was when we discovered what sex it was.

JUR came running up to me. "Christmas tree is a BOY!"

"How do you know that?" I asked following him back to the tree.

"Cause he's got balls!!"


 
That he does. That he does.
 
 
That sweet thing would grow out every spring about 2 inches. His needles would get super SUPER SOFT and we would all pet him. If felt like an animals fur it was so soft.



So soft. Then without warning they would harden into super SUPER SHARP needles, and as you went to pet him, he would stab you and leave you bleeding. What a funny little tree, somewhere in his linage there must have been a branch with cactus's in it.

When Christmas tree was about two year's old we learned something else about him.

He was a killer.

We would find bugs skewered on his sharp needles. My favorite murder was a fly that was impaled right between the eyes. Just hanging there like it was flying.  I slept better knowing our killer tree was on guard outside the front door.

The kids frequently put stuff in his branches. It was common place to find Christmas tree infested with army men or jewelry.

Then in the fall of 2013, I noticed some of his needles were turning brown. He fought hard but by November he had died.



Death didn't stop his murderous ways....


Like I said, he was a funny tree.

It broke my heart when my daughter noticed he was dead.

"Mama!!" she called as she stood over his bucket. "What's wrong with Christmas tree?"

I sat down next to him and her. "He died."

Her face turned upside down and her eyes filled up with tears. "Oh tree" she wailed and went to hug him.

He poked her arms.

What a stinker.

We left him on the front porch. I wasn't going to do anything with our little tree until spring came and he didn't bud out. I half expected to see those soft-soft needles appear like usual.

But as March came and went, and there was no signs. I finalized his death certificate and prepared the children for his funeral.

Sent my daughter off crying again. She wasn't ready to part with his corpse yet.

Finally it was time. We decorated him with tinsel and took our last pictures of him.



"Oh thank you little tree for hanging with us and being part of our lives." I said as the neighbors joined us.


Then we lite him on fire and howled like Klingons warriors screaming him into Stovokor.


The tinsel went WHOOSH, the kids went  AROOOOOOO RRRAAAAHHHH EEEEEEEEE!!

And when the smoke cleared. There was Christmas tree.

Oh what a funny, funny nonflammable zombie tree we are blessed with.

Okay my little one legged friend, you can hang around for a few more days, I thought as I patted his head.

As we slide his bucket back on the porch he proceeded to scratch me and JUR on the arms. Guess he didn't want a Klingon/Viking funeral.

Next trash day I said my quiet goodbyes and pulled him up and put him in the can.

Daughter came home from school that day and came screaming into the house, "WHERE IS CHRISTMAS TREE!!"

I held her as she cried.

"He is probably poking the heck out of some poor garbage man as we speak."

Cause that is just the kind of tree he was.

(Next: the beginning story of our new tree.)

Wednesday, April 23, 2014

Advice from a friend

Email from a reader after reading my "grief" blog. Grateful to ______ for sending me this.

************************
Hey,

Reaching out and gently putting my arms around you. I hear the loneliness in your words. The utter fear of stepping out into the unknown. The rabid anxiety of treading in quicksand. Life is sucking you under and you are going to "cut" yourself free of its grasp.

Its okay.

Its okay to be here in the moment and be experiencing all those thoughts feelings emotions life. I know it can feel like your skin is gone and your nothing but a bunch of raw nerve endings. It gets overwhelming to be bombarded 24/7 with life.

Breath.

just stop for a second and breath.

Your running 100 miles a minute trying to out run what ever is chasing you. Your exhausted and fatigued. There is no where to run so you feel backed into a corner and you are reaching for familiar comforting coping skills. You feel threatened so you want to lash out...fight life....since there is nothing before you the war is played out on your skin.

Turn the battle to another plain.

Focus outwards, not inwards.

try this.

Go stand in a hot shower. stand as long as you can then switch the water to ice cold. stand as long as you can.

The urge to self inflicted violence can be refocused. The energy you feeling tensing up your muscles, knotting up your soul CAN be released without injuring.

Your body is physically forced to refocus on the tactile assault of the water. It is forced to expend that energy to rewarm/try to keep you warm. Repeat as necessary till your body is free of the tension.

Then go wrap up in a blanket and rest. Self sooth your hurting soul by saying..."Its okay, its okay, I got you." (don't matter if you believe it or not, you have to start reprograming the internal tapes somewhere)

Then when you have calmed. Go throw out the broken pillspliter/blade.

Don't give me any lip about "I cant do that, it takes too much energy etc"...I've heard all the excuses, hell I've said all the excuses. What it boils down to is it takes less energy to take care of yourself and use healthy coping skills then it takes to live daily with SIV.



Breath again.

repeat after me:

"Its okay."

Wrap your arms around your shoulders...

repeat after me:

"I got you, its okay"

peace be the journey

P


*****************

WHAT THE!!! LOL Very funny _______!! - (she sent me back one of my own responses I sent to her eons ago.) That was hysterical! As I read it I kept thinking, this is good advice, but I was thinking _____ wrote it so I didn't hear "me" in it.

I am feeling better today. I guess blogging my pain and sobbing for the whole time was enough to qualify as "grieving".  I found my strength to go on again. But if the universe could give me a week or two of no residents dying I would appreciate it. Really I would.

Thank you all for acknowledging my pain and hearing me, even when I buried it under a fluffy post.

cheater cheater pumpkin eater




Told myself I could not blog anything new until I do something with the numerous "drafts" I have in the blog queue.  This was the easiest one to tackle. 


This photo is from 4 years ago. I had someone come to the house to see me and we had gone upstairs so we could talk quietly.

When it was time to go we came down stairs to this.

My friend gasped and murmured under her breath 'ummmmsombuddysgunagetintroublllllle."

I laughed and showed her out. I let her leave thinking I was a horrible mother who had no control over my children, and that my kids were unruly heathens.

It was easier then explaining that...this was a game of "fire drill".

I played this as a kid and love this game. Taught it to my children as well.

My older brother invented this game, one boring afternoon as my mother took off to go shopping. Leaving the lot of us alone.

He just suddenly announced "FIREDRILL!!!" and stood up and tossed the couch cushions out the open window. Then climbed though and leapt onto the cushions.

While we were stunned and our brains tried to sort out what the heck just happened. He ran around to the front door and pounded on it.

We opened it and he came in shouting "FIRE DEPARTMENT!! EVERYONE OUT!!" and started stuffing us out the window.

Game on.

In short order we were all "rescued" and promoted to firemen.

Then we started evacuating the living room furniture. Out the window it went if it fit, or our the door if it didn't.

In short order the living room was bare.

Then we stopped for a split second and surveyed the impromptu yard sale we suddenly had going on.

Older Brother cocked his head and listened. "I hear the station wagon! Mama's coming!"

We all froze in terror.

He knew just what to do...

"REVERSE FIREDRILL!!! he shouted, and sprung into action.

In short order the house was returned to normal.

Our mother returned to find us laying in the living room watching Gilligan's Island. Blissfully unaware of the shenanigans we had pulled.

Not wanting my own children to miss out on this type of fun, I was sure to teach them the basics of the game.

They learned to play it indoors though. With the condensed version for those that don't have 5+ sibling on hand to carry stuff.

It was easy to get them to clean up that mess.

I closed the door after my friend left and took that picture. Then I put on the pirate hat that is under the muffin tin and got on the skate board by the couch.

I used the "reacher-grabber" to pick up a single playing card and place it on the floor face up, and said, "I win."

Game on.

In no time the cards were in a neat pile.

I used the reacher-grabber to then toss a farm animal into its bucket. A rain storm of flying animals followed it.

I grabbed a pumpkin and turned to them..."Trick or treat"

and they filled my pumpkin with small toys.

Cleaning up was painless and just part of the game.

A simple in the moment childhood game that is satisfying as well as fun as heck to play.

Tuesday, April 22, 2014

Grief

Before I go off on what ever tangent my heart is heading to tonight, just a quick update.
I have felt much better mentally on the levoxyl. Unfortunately my work has turned into a stew pot of emotions and chaos and stress. Which is spilling out of its confinements into my home life.

Which is making me want to run away. Permanently.

I've got that boxed in - holy freaking hell - feeling going on. Like I am on a train that is speeding hell bent towards a concrete wall. Feel like I have a bomb in my hands that reads 0 seconds left on the timer.

When life kicks me like this, I wonder why go on?

Its not the depression holding my head under the water and making me want to off myselves...its LIFE its self.

Sixteen years ago when I started at my current job, a resident came in shortly after me. He looked like my dead grandpa, and shared the same name as him too.

He and I became close over the past 16 years. He watched and worried over me as I was pregnant. Touched my belly felt my son and daughter kicking. He came to the office and held my son. It was a kick in the gut to see this grandpa look a like holding my son. All my grand parents died long before I got married.

He died last Friday.

And it makes me want to leave my job and walk away and never go back. It was bearable because he was there, now work hold nothing but heart wrenching chaos.

I want to work in a job where the raw pain of life isn't a daily thing.  I have survived 31 years in long term care.

I don't know if I have it in me to make it much longer.

I don't grieve.

I run.

Or I silence the pain within by burning wounds without.

I need to grieve.

I just don't know how.

How messed up is that?  It stirs up pain. Just raw heart shredding pain. That never heals. Just another thick layer of scar tissue laid down on my soul.

numbing.

I don't know how to fix this problem within me...

...except to keep running.

Wednesday, April 16, 2014

Closer


I was eleven years old.  Head over heals in love with  my classmate James Lee Staley.  I want to marry him. I have already decimated Mrs. Johnson's daisy patch with many rounds of he loves me, he loves me not.

I always cheated and always end on "he loves me."

I want to be happy. I want the dream of a loving husband and a life of love and happiness. I want more than anything on the planet to find someone who can love me. More than anything on the planet...well except a big black stallion with a flowing mane and tail who will only let me ride him....and a candy store. I am after all only eleven.

But i am no ordinary eleven year old.

I have ghost words that haunted me on a deeper level. A very cruel and mean grown up felt the need to grab me by my arm and tell me when I was 3rd grade that I was so ugly that I would never have a husband. But perhaps even more damaging was the person who told me that I would never have a child. Ever. That I would be alone forever.  The "ever" always hissed mockingly in my ear. I grew up knowing that I would always be surrounded by people, but forever alone.

June 1st James was killed in a motorcycle accident. A few days later Mama tossed the obituary page in my lap "did you know him?"

"yes" I whisper and retreat to the solitude of my mind. I stare at his name on the page and feel my soul fracturing.  He died because I loved him. I poisoned him. I vow to never love another living person ever again.

*******************************

The above an excerpt from previous writings.

 Look what the internet burped up today.
 

 


 I have traveled to the city he died in and walked two cemeteries reading each tombstone, looking for this one. I never found it. Know I know why, and where it is located.

I will travel there this summer and do what I have wanted to do since June 1977. Sit and finally grieve.

There is a piece of Jim I carry in my soul, and always will.

Some friends I just refuse to give up.

Tuesday, April 8, 2014

Meekewios (Mah-key-wee-os)


When I was little I would escape to the field behind my house and hid in the tall grass. The warm sun soothing me like I wish my mama would.

That is where Grandmother found me.

Her long dark hair filled with lightening bolts of silver. She parted the grass and joined me. We laid silently watching the clouds drift past.

"I don't belong here." I finally whispered my lips quivering.

"I know child." she replied. "I wish I could take you away."

 
"Why must I stay? I want to belong somewhere...I want a family, I want to breath and I want to know what my purpose for being here is...I don't want to be hurt anymore." I hide my face in my t-shirt so she can't see my tears.

"Tiwi was" She whispers. (Ta-wee-wass)

I peak out from my cocoon.

"Tiwi was" She whispers again, her dark eyes locking onto mine. "it means, Bowstring that will not break, and that is who you are. You will not break. You will remain strong."

"I don't feel strong Grandmother." I run my hands down her scared arms and then look to her eyes. I ask without saying a word about them. Her dark eyes smile but the pain comes through, in it I see my own empty reflection. "I feel lost and scared and very alone." I wail throwing my self into her arms.
 

She gathers me up and carries me through the grass and down the bank to the creek. She kneels with me in the gritty creek sand. Gently leaning me over the gurgling water she points to my reflection. "she is with you always."

 
My eyes narrow and I glare at the girl in the water. "what good is she?! she is just as lost as I am!"

 
Grandmother pushed me back on my haunches and wrapped my arms around me. "Close your eyes" she commanded. "Now squeeze yourself tight. Repeat after me. I've got you. I've GOT you. I am right here. I am RIGHT here."

As I did so I heard her dunk her hand in the water and then place it on my head. "I am right here." I say as the cold water trickles down my neck. I open my eyes and she is gone.

I smile at her funny ways and lean over the water. I look at the girl undulating in the moving water. I stare deep into her eyes. Not exactly who I wanted on my team. "Guess its you and me kid" I snort and get up. "common, lets go" I say to her and head up steam.

 
I wade and get lost in the sounds of the creeks sanctuary. I stop to gobble black berries and smell the honey suckles that grow along the banks. At last I come to the tunnel.

I climb up the thick concrete sides and stand in its mouth. Many, many times I have trekked here, its like some shrine I visit. I dance through the shallow water to the middle and wait for the echoing splashes to fade away.

 
The middle is the sweet spot...and the echoes there come at you from all directions. "Hello!" I call.
 

"Hello!" the tunnel cheerfully returns my call.

 
This is one place that will speak to me. A place where I am not alone. "I've got you. I've GOT you. I am right here. I am RIGHT here." I call.

 
"...got you... GOT you... right here... RIGHT here." it calls back.

 
"I am Tiwiwas!" I smile and proclaim.

 
"Meekewios " it calls back.

 
I startle and look around.
 

"TIWIWAS!!" I shout
 

"MEEKEWIOS!!" it shouts back.

 
I turn and splash noisily from the concrete tomb and run home as fast as my bare feet can fly over the dusty trails.
 

Summers never last long enough and neither do childhoods. I couldn't stay a child forever. There came a day when I was 14 and I again sought out the serenity of the field grass to silently hide and just be still.
 

Like a cat she slithered soundlessly through the grass and curled up next to me.
 

"hello Grandmother." I say in my monotone, the life long gone from it.

 
"hello, my child." she replies .
 

"I am dying inside. May already be dead. There is such terrible darkness within me, I am a horrible person. Everyone hates me. I will not give to them. I will live up to my name Grandmother, I will be the bowstring that will not break. I am a rock and an island"
 

She sat up and leaned me up. She took my arms and mimicked the act of notching an arrow on a bow and drawing it back. We aimed the phantom arrow just over the grass line and let it fly.

 
"again" she commanded.
 

I look at her with hollow eyes, not understanding were she is going with this.
 

"again" she commanded.

 
I draw a invisible arrow from my invisible quiver and notch it on my invisible bow. I draw it back and hold it. My cold eyes challenging hers.
 

"That bow string is not breaking, but its yielding to provide the energy for the arrow to fly."
 

My fingers release the string and my heart watches the arrow dart off, disappearing over the tall grass.
 

Grandmother leans over and swiftly pulls up a hand full of clover grass leaves. She stands and deposits on my head. "Tiwiwas, unstrung a bowstring is soft and supple and flexible. Strung its taunt and tight and ready to fight, but in the fight, in the act of its purpose it gives... it yields...you can be strong and flexible at the same time...and still not break."
 

I shake my head and the green leaves rain down around me. I turn to question the old woman further but she is gone.
 

Time runs together when your living in hell. Each year blending into the next.

I held on and didn't break. No matter what was pitched at me I swung. Sometimes I used my bat...till it broke then I threw my body in front of the pitches. I took every blow and refused to break.

I was twenty-two when again my thoughts got on a dead end route and turned to suicide as the answer.

I decide to kill myself. I leave my house and head to the trails that will take me deep into the mountains. As I walk the paved road the crows caw over head. I am too lost to listen to my friends. My eyes never leave the road. I do not caw back to them. They continue to call me as I walk. Not today my friends, today you can't help me. Today I need something more tangible them spiritual support. Today I need a sign to alter my path.

I reach the trail head and see a yellow paper fluttering on a bush.

I stop and grab it and turn it over.

Its four squares of yellow construction paper threaded together on a white piece of yarn.  Scrawled in crayon are the letters K - R - O - W.

I froze.

Suddenly aware the crows were no longer calling to me.

I turned slowly around and look.

The wind stirs and then blows hard on my back, attempting to push me away from the trail.

I slip the yarn necklace over my head and smooth out the yellow papers on my chest.

The crow take flight leaving the tree line dotting the sky in Morse code all the way down the road.

My heavy feet follow them as they fly away from the trail head, and lead me back to my home.

Arriving at my drive way, I find Grandmother waiting in the grass near the mail box.

I stop and stare at this woman as tears fill my eyes. I press my hand to my chest as my throat tries to choke off the sobs. Under my hand the KROW papers crinkle.

"W-who is Meekewios." I stammer. So exhausted from the life and death struggle that had just played out.

She pats the grass in an invitation. I curl up and lay my head in her warm lap.

"We are all two people. The one we are born, and the one we become. Oh little one...If you were born into my tribe you would have been a fierce warrior. You would have learned to hunt and ride. You would have been taught to carve arrow heads and make your own bow. But you were born out of sync. You feel like you don't fit in here on this planet. Like you were left behind. Feel like you are adrift with no anchor and lost. That no one understands you. That no one sees "you".
 

When I was a child I lived in a family that hurt me. I grew distant and stopped trying to belong. I shut out everyone on this planet. I grew cold and hard and hateful. Everyone was my enemy. Even me. You once asked me about the scars on my arms." She ran her old hands over the ghost that hung on her skin.

"Everyone of them are self inflicted. My hatred of life and self had to be expressed. I cut and burned gaping wounds in my skin to vent the pain my soul was in. I couldn't cry tears. I couldn't scream so the blood spoke for me. But you already knew that didn't you? Your own scars encase you like barbwire. I know you understand." She grabs the tall dark grass and rips up a handful.

"I do grandmother." saddened that her life sounded exactly like mine. The tears fall angrily. While my soul writhes in the pain of her life....and mine. My heart aches as it tries to make sense of this. I close my eyes and tighten my grip on her skirt.

"Who is Meekewios." I ask again.

The grass rains down on my head and I hear her say softly. "Oh my child, do not fret, If she is looking for you, she will find you, no matter where you are."

I drift off to sleep in the warm sun. She is gone when I awake. That is her way. I have long since stopped asking questions.

Pain, frozen in time, alters the flow of life, the years become stagnate ponds. I drift aimlessly until I decide to change. To halt the back sliding tide of the suicidal thoughts. There came a day I had reached the bitter end. I use the last of the strength to reach out, one last time, just as I let go of the rope.

I am caught and passed hand to hand my the professionals who treated me. actually, a better term would be ....re-parented me. By now my body has grown and I am only young in my mind. I am starting to resemble Grandmother in my reflection. My long dark hair, now has silver lightening bolts shooting thought it. There is something comforting about seeing her within me. I wish to be as loving and supporting and healing as she is.

One of my therapist does hypnotherapy sessions with me. We are chasing monsters in my head. Each week will pick a memory  and see if we can change it.

I am hypnotized and then in deep trance she tells me, "Are there any memories there that want to be changed?"

I twist instantly in the recliner as the maw of pain opens and retched up a memory. i am too widdle awon in mi bed. She will fine mi here. not not saf. not saf. NOT SAF.

Therapists voice enters my memory. "You are safe here. We are just looking at the past. What can you change in this memory."

she will com thew the door i can klose it.

"can you do that?"

no I too widdle...so skawed....wait...not awon here. A noffer woman is here.

I watch as this new woman goes past my bed and shuts the door then leans firmly against it. Watching me. Protecting me.

its saf now, I kin sweep

"who is the woman?" she asks in her dreamy hypno-voice.

I try to focus on her. She is strong and powerful and not afraid. She knows who she is and how to handle things. She is beautiful. I have seen her before, i nows her...

"can she tell you her name?"

i nows her name, i fink dats Meekewios

"And then what happened?" she gently asks.

The woman at the door comes to my bed and tucks me in. She smells of hay, horses and wide open spaces. I smile and close my eyes. I feel the clover grass kiss my face as she sprinkles it on my head. "oh my child sleep well."

Her voice gives her away...Grandmother?

an den I woks up.

I bolt upright breaking free of the hypnotic state instantly. I scramble from the chair and stand with hair on end in the small office. My mind whirling and churning.

I am in the eye of the universe. In this moment this time, this pocket of primal knowledge, I am plugged in an aware on multiple levels of shared, flowing undulating consciousness. Tapping into all that is human and life...and for a fleeing second it all make sense as I pass though knowing all the mysteries that cause man to wonder.

The therapist give me a moment before asking if I am okay.

Her words break the spell and the power of speech is restored to me. I exhale loudly. Goose bumps race up my arms. I hold them out and show her.

"What it is?" she asks sensing something bigger is happening.

"When I was a child, Grandmother used to find me, where ever I was and comfort me. She...." I catch my breath. The love of the memories rushing into my heart. "She was always there when it was darkest. She encouraged me. I lived on because of her strength." The tears flow now.

"Has your grandmother passed away?" she asked guessing as to the source of the tears.

I shake my head, "you don't understand...I have several Grandma's...no one saw Grandmother, but me. She was a spiritual presence."

My mind whirled and the thought of what this meant opened up a tunneling void in my head.

The middle is the sweet spot...and the echoes there come at you from all directions. "Hello!" I call.
 
"Hello!" the tunnel cheerfully returns my call.
 
This is one place that will speak to me. A place where I am not alone. "I've got you. I've GOT you. I am right here. I am RIGHT here." I call.
 
"...got you... GOT you... right here... RIGHT here." it calls back.
 
"I am Tiwiwas!" I smile and proclaim.
 
"Meekewios " it calls back.

The therapist takes my hands and pulls me out. At last I find the words to speak the dazzling thoughts in my mind.

"Could the work we are doing here today and in the weeks to come, could...could that explain this woman in my childhood? That grandmother was really me, in the here and now going back into the past to help young me? Am I saving myself?...Did I save myself?"

She let go of my hands like they were hot, and held them out as the realization caused her own arms to goosebump. We hug and dance in the gleeful delight of this mystical gift from the universe.

I know who I am. Who I have always been.

I am not lost.  I am not alone. I know this because she whispers to me. Oh my child, do not fret, Grandmother Meekewios will find you, no matter where you are...

and you all know her too...she has visited you in your hearts. She has come to share the dark days and offer her comforting words. Not to try to heal you, but just to be with you as you journey though life.

You call her by the translation of her name...Dogdancing.

...she will find you, no matter where you are...

Monday, April 7, 2014

How I ended up on Levoxyl in the first place.

I knew my family had a strong history of hypo and hyper thyroidism.  So in my twenties when I was taking stab at getting help for my depression/seasonal affect disorder/PTSD, I reported this to my doctor and they ran a thyroid panel.

The results came back indicating I was hyperthyroid.

Great. Another diagnosis to add to my list.

They ran an uptake scan to get a look at how much radiation my thyroid would suck up in 24 hours.

That was an interesting experience. They take you to Nuclear Medicine and lead you into a room where the tech puts on a led apron, neck wrap, and heavy lead gloves, then opens two locked lead doors, then pulls out a 5 pound lead container and screws it open and pours out a single capsule. Then after all that they hand you the medication cup with a glass of water and say "Swallow this."

uuuuh...no? You just scared the crap out of me with all that routine and now you want me to swallow what you had behind all this lead protecting gear? Gaaaah!!!!

I did though.  All in all I have willing swallowed radioactive material three times. Surprisingly it gets easier the more times you do it.

They called in to discuss the uptake scan results.

"P your hyperthyroid."

"What do we need to do to treat this?"

"Were going to keep an eye on it. Treat it if necessary."

And that was it.

HELLSBELLS!! What the hell is wrong with the world? I was suffering from thyroid symptoms and had been since I was ~19 years old. EACH doctor's appointment I would report them. It was well documented that I was having physical/mental symptoms.

*Face palm*

"okay doctor, its nice to know I have a medical condition that can get life threatening if left untreated that you are leaving untreated, thank you?"

I just resumed living knowing I was living with hyperthyroidism. Never had it tested again.

Fast forward to 2001 and I at my first OB appointment for my first pregnancy. I am giving them my health history and I am sure mention I have hyperthyroidism.

The doctor, looks up at me and shakes her head no. "If you were you wouldn't have gotten pregnant."

Kinda used to being treated like crap by doctors I snarked back. "Verified with an uptake scan in my twenties."

She stares me down with a glare and then sighs and reluctantly ordered a thyroid panel.

The next day I get a call from her, "YOUR HYPERTHYROID!" the urgent panic coming clearly over the phone.

No shit Sherlock.

What I didn't know and never bothered to research before getting pregnant is:

Untreated hyperthyroidism in a mother can cause miscarriages in the first and third trimester and can cause the fetus to stop growing all together.

My TSH was less than 0.05

Thyroid labs are kind of backwards, the LOWER the number is they MORE hyper you are. 

I was IMMEDIENTLY started on PTU to bring my labs back into alignment.

Now we have covered how sensitive to medications I am right? Imagine how well this went over in my system that was used to being revved up and functioning on extra thyroid hormones. ~16 years of functioning in hyperspace and now in a few days dropped down to normal.

UUghh. Not much fun. AT ALL.

So let me get this straight. When my hyperthyroidism is endangering only me, its left untreated, but if it endangers my fetus then it gets treated for it?

What the ?

While I was being monitored by the high risk neonatologist, he had three hyperthyroid mama's in his care. The other two's babies stopped growing in the third trimester.  Being hyperthyroid and pregnant means A LOT of ultrasounds and closer then normal monitoring. I beat the odds, not once but twice.

I stopped the PTU the day I delivered JUR. And in no time at all was suffering from the symptoms again.

Fast forward again, round two with second pregnancy. As soon as I tested I call for an OB appointment. And the secretary and I had this cheery little chat.

"I am  4 weeks pregnant and I need to schedule an appointment because I have hyperthyroidism, and need to be seen asap."

"We don't schedule appointments till 8-12 weeks along."

Maybe she didn't hear me? Giving her the benefit of the doubt I replied, "I have HYPERTHROIDISM it can be fatal to my fetus in the first trimester, I don't need to be seen in 8 - 12 weeks, I need to be seen NOW. Put me on hold and go ask the doctor yourself."

The doctor picked me back up and scheduled the appointment herself.

And we got some cool 3D pictures of Cletus the Fetus



I was once again on PTU.

But this time is was different. I took more of the med to rope my thyroid in. They had  to run me lower then last time and being then Hypothyroid I was experiencing psychotic thoughts (not unlike what I just lived with the last 10 months)

I stayed on the PTU after I had Hansolo, but I started to get they cardiac side effects of hyperthyroidism. the heart palpitations were really SCARY bad. After wearing a hoilter monitor for 3 days they had enough  to be concerned that I was heading quickly down a life threating path with the cardiac effects.

The endocrinologist kept waiting for my TSH to stabilize postpartum, but it never did.  When I stopped nursing we did another uptake scan and it showed what we all ready new....I was insanely hyperthyroid. Final diagnosis Graves Disease.

Incurable.

But treatable.

The decision was made to do the RAI (radiate my thyroid dead) to control the Graves disease. Can't cure the Graves but you can eliminate its target (my thyroid).

It all sounded so simple. Radiate thyroid dead, take thyroid replacement for the rest of my life.

So down the rabbit hole I went.

My endocrinologist was VERY firm that his patients only take the BRAND name thyroid replacement, because the generic can alter depending on which company makes them. So I was given a script for Levoxyl.

But in the back of my head, I always knew, if I needed them I had Armour Thyroid, Levothyroxine and Synthroid to fall back.

From 2008 to June 2013 I faithfully took it every day. I don't mess around with this. I have a mostly dead thyroid that has been permanently damaged, I MUST TAKE REPLACEMENT FOR THE REST OF MY LIFE.

Then the Recall happened.

Its funny to realize that, I have become a vulnerable human. I can't afford to be lost or stranded anywhere. I MUST have this medication to survive.

and now, unfortunately can also say....that the generic and brand name Synthroid do not agree with me.  (We didn't try the Armour)

Its Levoxyl and me baby. All the way.

(BTW, why I blog all this gobbly-gook is so my children can read this when there older and know me in a role beyond, food sever and transportation device and toothbrush gestapo. I do know it's of no interest to most of you. For you, you have to weed though these types to post to find the ones worth reading like...tomorrows.)

Sunday, April 6, 2014

14 hour follow up

******************** TRIGGER FOR SIV ********************

It was like trying to sleep before Christmas as a little kid. Finally had to medicate my selves with the last 2 Norco, hoping maybe being pain free would help me sleep.

Still the urges were so bad that I awoke in the night to me punching my self in the face repeatedly. That was a new one for me to SIV in my sleep. Black eye greated me in the mirror in the morning. It was a surreal experience to injure my self from deep sleep. I do not ever want to go through that again.

I'm not kidding when I report that I am super sensitive to medication. I don't normally take two Norco because the doped up feeling will last 24 hours. I was in a foggy place most of the day.

But when it wore off...

There was nothing.

The was no SIV urges no suicidal urges, just nothing.

I am not going to say the levoxyl miraculously returned me to the land of sanity. It may be a placebo affect at work, because I want this to work so bad, however, I felt better then I have mentally in a long time.

It ALSO maybe a direct side effect of inflicting violence on my self. Self injury will produce the same effect in my brain.

Either way, I will take it.

Next post: the how and why I ended up on Levoxyl to begin with.

Friday, April 4, 2014

14 hours to keep myself safe.

************TRIGGER FOR GRAFFIC SELF INJURY PHOTOS /TALK OF SUICIDAL THOUGHTS ************* *********

Maybe I should just say...Trigger for P?? Please don't read if not safe, because I am NOT SAFE and too raw to watch what I am saying to protect my readers.

The Levoxyl nightmare is nearly over. The clock started at 4:30 pm Friday April 4th.
I have 14 hours to keep myself safe. I know it might take two weeks before my body/mind clears but right now that is too overwhelming of a thought to think. I can only deal with the next 14 hours.

I have Levoxyl in my hands.

Saturday morning I will resume the Levoxyl that was taken from me last June by the drug recall.

Today I have been dealing with rolling waves of self harm urges and suicidal flair ups. I have been experiencing this off and on for the last 10 months on the generic and Synthroid.

I know your thinking, how is this different from before?, you have always been suicidal and living with self injury urges for as long as I have known you.

Those urges respond to my coping skills.

These that I have experienced the last 10 months DO NOT.


Honestly, I didn't think I was going to live through last December. Had the Buspar not worked they would have had to hospitalize me. I was a definite danger to self. The above was in September when I was having urges to burn off my toes, and to amputate my fingers. (Just to be clear the wounds were done in Sept and Dec respectively and they are both fully healed now.)



Thank God my therapist knew their shit and installed very strong healthy coping skills and fail safe procedures within me while I was under their care years ago. Other wise I would be typing to you with fingers numbering 8 and toes 6. Or worse, my family could be trying to live on without me.

I post these pictures to show you the depth of this adverse medication reaction on my mental health. You can't SEE PTSD, you can't SEE PSYCHOTIC thoughts. They are every bit as painful as those wounds look to be.

Being so close to the possible end of this night mare has me ragged and purely exhausted from trying to keep it together for the last 10 months. This has taxed me beyond my limits. Obviously.

Sheesh...if you think the blogs I posted were "off" you should read the drafts that were not posted. My writers mind has gone dark. No not dark as in the lights are out...DARK as in holy-freakin'-hell she's writing madness induced manifestos.

Praying this transition back to levoxyl will be hiccup free and that the mental side effects of the synthroid will fade quickly. Because...I'm out of patience. I don't have enough rope left to knot and hold on.

The relentless rolling waves of suicidal thoughts erode away my fragile hold on sanity. Thought patterns changing from the dull...I want to die....to the more sinister ....It's time to die.

I want to stop fighting. I want to coast into tomorrow, I want to let go of the rope for just a second and allow myself to drown. To give in and inflict damage to my selves that will equal the tortured pain I am in that no one can see. I want to listen to the part of my brain that is crying and wants to be shushed with a fist to face and crowbar across the temple.

heavy. very. tired. sigh.

Right now my eyes are on the water break. I only have to keep treading water for 14 more hours, then I can throw my self a life preserver in the shape of a little olive colored tablet of levoxyl.

Fourteen hours and the fight to regain my footing and mental stability will take the first step in the right direction.

I just have to ride these last few hours out and keep my self alive and unharmed, while my head is screaming...jump.

Tomorrow,  I will awake and fight on.

But for right now, I am so done...and I don't care who knows it.

(FYI: for all those of you, who hold my "rope" with your prayers and thoughts. Don't let go. I know you are there.  I have asked my hubby to read this. I am not alone and I am taking care to keep my selves safe tonight. If I can't do it, he is aware and here to help me, stay safe.)

* Saturday update. survived the night. back on the Levoxyl and ready to fight for another day.

Wednesday, April 2, 2014

siccum

******************* TRIGGER WARNING *******************


He leans over and slowly smooth's the rough edges of the darkness as it pools adoringly at his feet. He fumbles with the latch on its leash. The darkness bristles and hisses. Then realizes its free. It rises like an exhale and takes flight. Dematerializing into the night.

Two short drags off his cigarette and he snubs it out barely noticing the slight tremor of his hand. The sound of life fading in a fuzzy numbness.

He retrieves the keyboard  from the floor and sets it back on the table. Several keys are missing giving the a toothless grin.

Again the hand tremor.

He places the ear buds in, and for a second holds them there with his fingers. The music whispers its confession directly inside his head. His soul flat lines. No response.

He turns up the volume trying to crack through. His head bobbing with the pounding base.

Empty inside. the normally comforting music withholds its embrace.

He draws in an jagged breath and lashes out, pounding out angry words on the keyboard. Hell bent on harming those who would read them. Sharp slicing words meant to draw blood and leave wounds. Meant to murder and damage.

The darkness condenses and falls on him like a cloak. Offering its familiar presence as the only comfort as he writes. Only when the tears fall does he stop.

The pain contained for the night in its flat prison. Captured in type. Rendered.

He pauses. Sighs deeply, suddenly aware that his skin is so heavy.

He leans back with eyes closed. Adrift. His soul caves in as he tries to breath. Drowning. Banned forever from returning to land.