ROAD TRIP TWO!!

Four years ago Hansolo and I hitchhiked with my bro and Dad and this trip unfolded:

ROAD TRIP!!

Four years later Hansolo and I headed down by ourselves to San Jose to see Fall Out Boy in concert and see the family we spent that night with in the above post.

*arms flailing like Kermit the frog* *fan girl screams*

YES that ticket says we are on the floor in row number 8 !!!!

Yeah, I may be old, but this girl loves to rock!! And the thought of sharing this my daughter was incredible.

This trip was different because I had to do all the driving.  Bleah….not a fan of big city driving.

I had 6 months to stress out and worry about it, so the anxiety was pretty profound before we even packed the suitcase.

I worried about the most weirdest things. Like its been ~25 years since I pumped my own gas. LOL. I hit up you-tube for tutorials before we left. Thank goodness for those, it really helped.

In all the anxiety and worries I stressed about I never stressed about what really delayed our departure by one day.

 SHIT!!

Okay girlie you got 24 hours to recover and we are leaving well or not. I spent that 24 hours revamping our itinerary and reprinting all the directions.

The next morning, armed with cough drops and tissues, I pump her full of Tylenol and we head out. I stop to take my temperature....

SHIT!!!   now I'm dying!

You know the rules.... Suck it up buttercup!! PUT ON YOUR WAR PAINT!! Hansolo, Darkness and Me are on the road!!

 Darkness gives us a thumbs up.

The drive was brutal with my back and polymyositis. …..dude....not kidding at all. The muscle weakness/loss of function is just staggering. To the point that I can tell you the next trip we do like this will be in 4+ years when Hansolo can do the driving.

We've been trying to get out of debt and we have been living with in our means. This trip was a luxury we had to do. Because I now that it quite literally it may be the last time I can do the drive physically. Jumping a head ….it took me three weeks to recover from that drive. :(  So my concerns were justified.

We made it to the motel and once there, I was afraid to venture out. I wasn't confident that I could find my way back to it. I do directions better with a  map vs printed directions.

Anxiety is racking up points faster then I can down Ativan. heh.

In reality, I brought my Ativan but never took any. Though I probably should have. LOL

Sunday our one mission was to find Chili's and eat. Map said it was 7 minutes away.

three hours later.....

 WE FOUND IT!!!

 COMMON WE HUNGRRRRREEEE!!!

 oh my sweet woman/child...you are so beautiful and I'm having a good time adventuring with you.

 Paws off the chicken Darkness!

Darkness hanging our with our waiter Austin.

Darkness pumped gas, cause she is a good kitty who didn't want us to get stuck in California.

 The Arena motel was a writers dream! So beautiful and a treasure hidden in the middle of a big city.

 It was just the right thing to feed to writers minds.... endless mirrors and a weird carpet that was in a state of temporal flux.

 The concert.

oh dude. No words. FOB kicked ass!

 Little child, feed your soul. You are a spectacular light that shines so bright! You are a leader, not because you want to be...but because you are out in front. Your friends love you for who you are. May you one day be able to claim the light you carry and find strength in it. Until then, just keep rocking and rolling.

 oh and stay frosty Royal milk tea.

 This is my phone camera ...takes crappy pictures makes us look miles from the stage. We were in row EIGHT. We had no trouble seeing.

 I DON'T CARE!!

Not sure if this video will work or not. In case it does...VOLUME WARNING -- FAN GIRL SCREAMING AND SINGING WARNING -- CRAPPY SOUND RECORDING WARNING

wait its over already?

Concert high. revved up and feeling creative.

 Night little one. Happy dreams.

Time to head out for our next stop. Seeing some of our family.

"I don't know where you're going,
But do you got room for one more troubled soul
I don't know where I'm going,
But I don't think I'm coming home
And I said, I'll check in tomorrow if I don't wake up dead
This is the road to ruin and we're starting at the end"




So much music on our drive. FOB is a deep band. I have always loved there lyrics.

oh hello! we have made it to San Francisco!!

 By this point my anxiety has me convinced we are lost and somewhere in Ohio.  We found this friendly fellow on the road and followed them.

 My reasoning being...we need to find the rainbow tunnel...and maybe this magical mystery bus will lead us.

 "Mother you are so weird...."

 my true reaction to finding our way to the G-bridge. *HOLYSHIT I DID IT WITHOUT GETTING LOST!!!!!*

 We've been here before...we know where this rainbow tunnel leads us now!! Family is close!

Blood hounds have nothing on us... we have tracked our family down!

 

 Luna Love...

 Luna: you saw FOB? (touches concert t-shirt)
Hansolo: yes.

 The interesting thing about my cousin A's house is...its so magical that as we walked through the door Darkness became flesh.

 See....rainbows.

 Don't feed your fingers to Kibbles and Bits there Hansolo.

(insert a bunch of pictures of the family - that I can't included to protect their privacy)

lets just say, if everyone knew how amazing being a V___ was, they would be beating down our doors to join our tribe.

We head out at 5 pm and head for home.

As the miles disapate behind me...Darkness reverts back to stuffing. What are you stalking there Darkness?

Oh my feather. Silly puddy cat. You can see the fatigue creeping in my face here. Six hours left to drive at this point.

We made it home safe and sound.  Loosing a day of vacation meant we had to skip the Winchester Mystery house, but that is okay....after a few years of rest...we will go back.  Cause we got cheated this time. Not even one earthquake. Geesh, We weren't asking for much.

Your slip is showing

Interesting Freudian slip I just did asking my husband what his new insurance payment will be... 

"can you ask her what your monthly painment will be?"

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?

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.

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?"

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.