Friday, September 14, 2018

Ode to Seasonal affective disorder

One would think

that as tattered and ripped as

my soul is,

the stress would just drip from me and be gone.

One would think that

as broken and damaged as I am

this vessel would hold nothing.

One would think

the icy wind of depression would

just blow through me with an eerie howl.

What part of me is sound enough to hold

anything?

and why, oh why does it cling to me with such tenacity

while the light bounces off of me and warms

everyone around me.

There isn't enough of me to cast a shadow

how is it the darkness can always find a place to hide in me?

Monday, August 27, 2018

3X

I hit 200 pounds the other day.

I am struggling with this revolting development. This is the heaviest I have ever been.

There was no need to buy bigger clothes because I have always worn my clothes one size larger then I actually am. I just gradually grew into them.

I am under doctors orders not to exercise when the polymyositis is flaring. I've been in a flair all summer.

I'll admit my diet often is not healthy. I use food to treat my depression, fatigue, anxiety and to self injure.

It's gotten so much worse since I had my thyroid radiated and I lost my sense of taste. When I go to eat comfort food, the taste no longer comforts me, I have to over eat until I can FEEL the comfort via a way to full belly.

The other day Wal-mart was closing out there summer men's t-shirts and had all the 3X and 4X's on sale for $3.00.  I bought a bunch. I've been in 2X for some time so wasn't worried about fit.

When I put on one, there was a calmness that came over me. I realized....I have been in a quiet battle with my body since I grew into the 2X's.  I do not like tight fitting clothes. I do not like clothes that touch me, frankly, I do not like clothes at all.

So the simple act of once again wearing clothes one size two big has calmed me in a way that being under weighted blankets or swaddled helps some people.

Three years ago work nearly lost me when they insisted I wear the uniform size they thought I should wear. Yeah....this is a real thing that does affect my life.

I found a bra that fits, without touching me and my skin rashed out every where it touched me. My skin wants to be naked. 24/7. Which is an issue I've worked on my whole life.

I know I can wear buckskin without issue. I'm considering making a new buckskin/doeskin dress.

Until then. I have once again found the size that acts as a cloak of invisibility that both hides me and doesn't touch me.

Tuesday, August 21, 2018

ugh, polymyositis worries.

Latest on exercising with myositis. "You need to exercise every two days but never two days in a row."
No wonder my 4 day work week is killing this summer. Just my normal life is contraindicated with my disease.
I'm in such a flair right now that after my 4 day work week, it takes me three days to recover. I never feel good anymore.
I need to exercise to get the weight off from the prednisone. But I need to increase the prednisone to help with the flair up, which will add more weight....ahhh, hamster on a wheel endless spinning and going no where.
On my vlog I mentioned about not being able to save my children if something were to happen.  That just eats at me. Its my job to protect them. I still need to teach my daughter to swim. I can no longer do that. If she were to need rescuing, I lack the strength to do it.

This is kicking my butt right now.

But gawd damn it I look fine!

me: struggling to lift a gallon of milk into the shopping cart the other day.

Ever so helpful know it all: "Oh common it's not that heavy."

Really? Did you really just say that to me. The only reason your not getting a punch in the throat right now is I physically can't lift my arm to swing at you.

….and that realization pulls a dark shadow over my soul... I have been a victim, I have sworn to never be again, knowing that I could an would fight back if attacked ever again...that knowledge helping me to heal and regain my power....now gone. I couldn't defend my self from anything right now. I feel vulnerable and weak. 

Its frightening.

Got a disturbing phone call at work the other night. It set off my alarm bells. For the first time in eons, I was afraid on the night shift. Vulnerable, unable to protect my self of the residents/staff. That's new head space for me. I am always the one everyone says, "if there is a creeper out there, we will just send Paja out to deal with him."

I don't like being the weak link in the chain. I am used to relying on ME to provide my safety/ protection. I am struggling with having to surrender that to someone else. I can't run away physically from danger nor can I stand my ground and fight.

Not that I have had to do that much in my life, but it does happen. Two+ years ago when a man tried to break into work, I stood between him and the staff. After the police collected him, one of the girls asked, "why did you stand there? what would you have done if he had broken the door down?"

"I would have attacked him, he would have had to get through me before he could have stepped one foot into the building."

And I would have. I had the strength to do that 2+ years ago.

Now...no longer.  Polymyositis is making me feel like a victim...and I hate it.

Oh, and by the way, the proper way to respond to someone you see struggling with lifting a gallon of milk into their cart is:

"May I help you?"

Friday, August 17, 2018

Polymyositis down and up-less

As I pushed the cart across the parking lot this afternoon. I had to pause.  Standing for a moment in the baking sun. My arm aching so bad I couldn't hold them up to push the cart. Tears fill my eyes as I wonder...will I be able to drive home?

I wrestle the bags slowly and painfully into the truck. The polymyositis jumped into my arms this year. But this summer in the heat its become crippling.

But damn it to hell I look fine.

A woman made a comment to me recently as we waited in line to register my son for school. The longer we waited and stood still, the more jello-ie my legs became. The are painful to force them to stand still. Too much fine motor skill needed....and not enough fine motor ability left in my muscles. I was pacing like a caged animal. I was in pain. I had just come off a 10 hour shift on my feet, I was still in my uniform. I was in agony.

From behind me I hear. "Be patient. It won't kill you to wait."

 It was the way she commanded me...without asking why. I haven't yet found the words to stay to busybodies who butt in. I really wanted to say: 'gawd I wish polymyositis was contagious so you could enjoy this too.'

I want to take a moment and share three vlogs with you.

***jiggle warning *** * * * Heavy breathing warning * * *





If only life was all down.

So this is my first trip up the stairs.





This was my second trip up the stairs. Note how I have slowed down, my legs were burning and  jello-ie all the way up. I kept stopping because I was so afraid of falling. You can hear my kids comments. Life is like that with invisible illnesses. but you look fine, how can anything be wrong?




I think I will follow my son's advice. Find paths in life that are up-less.

Thursday, July 19, 2018

It's gone

I have been cleaning my desk today. All over I am finding story/blog ideas I have jotted down.

In the past, all I needed was a "book mark" to jog my mind.

Now they are undecipherable cryptic notes.

That makes me sad.

I don't know if its the physical illness or the natural menopausal crap, or my brain has developed some sort of dementia, but its gone.... my ability to be a writer.

I look at the drafts in my blog folder, and I can see the ghost of the former me trying in vain to reach that level I once had.

I re-read over old stuff and …..fuuuuuuck man, where the hell did she go?

This revolting development isn't sitting well with me.

once my body was all used up and I couldn't work any more....I hoped to find a way to support my self via my writing. (yes I know that is a complete delusion...but one that keeps me from freaking out about becoming so disabled, and useless.)

So who am I?

all those labels of the past have been slowly stripped off by time and disability.

I was a runner, figure skater, rider, flyer, I was a untamable horse that everyone chased but never could catch.

I was a wife and a mother who gave 100% to her family.

Now I am the weak link, who is on the verge of becoming a burden...of not being able to pull my weight.

I don't like the new labels that are creeping in.

I am a financial burden, disabled physical train wreck of a depressed soul.

Once who can't sing for her supper.

One who's purpose is gone.

This is a lot like high wire walking over a huge crevasse...but the wire appears only a second before your foot comes down. I don't know which step will send me plummeting to earth.

Each and every step I take feels like my last.

Wednesday, July 11, 2018

WTH

*Morning rant* (skip if fucking curse words ain't your thing)
This morning my son tells me while at summer school he does 2 hrs of work then reads for the rest of the day.
ARE.
YOU.
FUCKING.
KIDDING.
ME?
THIS IS WHY WE ARE GOING TO SUMMER SCHOOL YOU ASSHOLES!!! BECASUE YOU ALLOW HIM TO DO THIS!!!!
YOUR A FUCKING TERACHER!!!! IF YOU NEED ME TO COME SIT BY HIM AND KEEP HIM ON TEACK 24/7 I WILL BE THERE, THATS WHY I WORK NIGHTS!!!! IF YOU AN'T/WONT DO IT THEN DRAFT ME, WEW ARE SUPPOST TO WORK ON THIS CHILD AS A TEAM!!! YOU ALL DON'T HAVE MY BACK IN THIS!!! AN I'M FUCKING PISSED!!
THIS RANT GOES ALL THE WAY BACK TO HIS KINDERGARDEN TEACHER WHO INFORMS ME THE LAST.
FUCKING.
WEEK.
OF THE SCHOOL YEAR AS SHE HANDS ME A GIANT WAD OF PAPERS, THAT
"JUR HASN'T BEEN COMPLETING HIS CLASS WORK."
WHAT.
THE.
FUCKING.
HELL?!
YOU JUST TAUGHT ME SON THAT SCHOOL ISN'T SOMTHING HE HAS TO DO YOU MOTHER FUCKING ASSHOLE!!!!
I TRIED TO GET THEM TO HOLD HIM BACK IN K, 1ST, 2ND, 3RD, AND 4TH GRADE. I COULD SEE HE WAS NOT LEARNING WHAT HE NEEDED TO .
WHY.
COULDN'T.
THEY??!!!
EACH YEAR I SEND HIS TEACHERS A EMAIL, TELLING THEM MY CONCERNS, HIS STRENGTHS NOT TO LET HIM READ DURING CLASS (and yes I can, and do stop him from bringing books from home, but they so kindly take him to the school library and get him one)
BIG LETTERS EVERY YEAR
NO.
READING
IN
CLASS
YOUR
THE
TEACHER
T-E-A-C-H HIM.
I'VE BEEN FIGHTING FOR ELEVEN YEARS WITH THE SCHOOL SYSTEM.
His class of 2020 is on tract to be the first class to have 100% graduation.
I just want to know how many students are being flushed through with out getting an education? who like my son are being allowed to skate with subpar work?
and more importantly.
WHERE DID THE EDUCATION SYSTEM LOOSE ITS FUCKIN' BALLS?
I'M TIRED OF FIGHTINGTHE SCHOOL SYSTEM. I GOING MORE PRIMATIVE NOW. I'M GOING TO START THROWING SHIT LIKE A MAD MONKEY
HE'S A CHILD! YOUR A GROWN UP
PART OF TEACHING IS TO
HELLO
TEACH!
all he has learned is, "you'll pass me no matter what crap I hand in. You won't listen to my mother and here advice. Teachers have no power over me...even the power to tell me, JUR put away your book and do your assignment."
RRRRRRRRRRRRRAAAAAAAAAAAAAFFFFFFFFF!!!!!!
*&^%&%$%#%^$&&*(^%$$^&(&*^%$#@!!!!!!!!!

Monday, June 18, 2018

Not yet

Since going on the prednisone my writing has ground to a near stand still.

I am bombarded by story ideas, but they disappear like soap bubbles when I finally have time to sit and write.

It's frustrating. It's like I have lost the internal music I write to. Just  still never ending silence in my soul.

So frustrating.

I have so many more stories to tell. I am not done yet.

DO you hear me illness, medication side effects? I AM NOT DONE YET. Let go of your hold on me.

I wonder, is the trade off worth it? being comfortable and having the chronic pain eased a bit vs never being able to write again?

It's like I sold my soul for comfort in my damaged body.

Functioning equals existing right now. A writer less zombie, dis-attached from my words. I don't feel alive right now.

All I feel is this murky simmering, threatening to boil over weight, of prednisone induced irritable-rage stew cooking in my head.

It's not fun.

My soul want to write. But not to that soundtrack.

bah.