Rewrite the stars- Greatest Showman song- relates to my relationship with my fiance’

Last night, I was on my pain meds and as usual the drugs made me a sappy, hormonal, emotional wreck; especially when all they do is make me tired and don’t actually help my pain, and as tired as I am, I cannot get comfy enough to actually go to sleep- which causes me to become irritable, frustrated, and emotional. Warning: Below, is how I feel on those kinds of days. You’ve been warned.

Don’t get me wrong, I do absolutely love my fiance’ and most of the time I cannot absolutely at all fathom my life without him, but on my really bad pain days when I am cooped up in the house on pain meds and can’t stand my own life, I relate to Zendaya’s lyrics of the song.

He is so positive and confident about us, and I am like that girl (because of my age difference and looking like a kid, and my disability- the “mountains,” and “doors can’t walk through”) and what the world thinks. and just waiting for him to realize that it is hopeless and impossible for us to truly be happy together. I am always thinking “he didn’t sign on for all these issues: Me hurting all the time, me lashing out at him because I am hurting and frustrated; because I’m irritable.. How can I expect him to love me when I don’t even love myself?”

Maybe he’ll teach me a thing or two, or maybe if I have such idle time, pay attention to the negativity.
It’s a lot of self-esteem issues and idle time, pain meds causing depression, being bullied from a very young age (5 years old)- it’s hard to escape the “voices” of my past, but I am working hard on it because I do love him and I know he loves me.

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Self Esteem Poem

Staring in the mirror,

Once again,

A never ending war,

Another day to settle,

On the reflection,

Staring back at me.

                Scars on my back, stomach, and side,

Evidence of my pressure sore, and trache also,

“My battle wounds,”

Of my Medical War,

Taunting me,

As they still are so evident.

                The Squishy, poor posture,

That prevents me,

From feeling beautiful,

And having that “model look”

In crop tops and bikinis;

                Physical differences rearing their ugly faces,

Evident and tormenting me.

I punch the reflection, then yell,

Holding my hand now,

I sit back and think,

Back on my life,

And suddenly smile.

                All the wonderful people in my life,

Some I wouldn’t have met,

If I had not had,

The bad physical disability that I had.

                The lives I’ve touched,

The people I’ve inspired,

How I gave others hope,

Why can’t I do that for myself?

I suck down the “poor Pitiful me” party,

And break another smile,

I am thankful for everyone in my life,

Because even though,

I am not “normal,”

They are in my life,

                Love me, and make my life,

Which would otherwise be lonely, cloudy, and grey,

Shine with a beauty bright. 

“What is Normal?” Poem

What is normal?

Is there an exact definition?

What does it look like?

Is it defined as:

Someone who looks like you?

But how can that be,

When everyone is designed differently?

                Does it have a common religion?

Or language speak?

Once again, how is that a possibility?

When each person varies,

In faith and speech?

                I know!

Maybe, perhaps, it is someone who behaves as you?

Once again, this cannot be,

The way they present themselves,

And act publicly,

Could be to show off,

Or due to some disability.

                So, I ask this question repeatedly,

What is normal?

To me,

The word does not exist,

Except by segregationists

                Do you wish to segregate?

And insinuate hate?

No? Then hear my plea,

Let’s erase this word,

From every persons’ mouth,

Erase it from the world’s vocabulary.

What is normal?

“Who is Jamie?” Poem

All my life, I would like to say,

I was a “normal” child

Could run and do all the activities like the others,

In p.e.

But that would be a lie.

Sure, I went to P.E., with my fellow peers,

But that was only two days a week.

                Rest of the time, I was segregated,

To a “special” Adapted P.E.

                Don’t get me wrong, I loved the adapted P.E.,

But when you already know you are different than your friends,

You don’t want,

Another sign or “special treatment”,

That proves it.

                You long to be “normal,” but no;

Sit on the sidelines, walk the track…

While the other kids run and tackle,

Coaches and teaches,

 Fearing you bruising and the possibility of parents suing.

“Can’t do this, Can’t do that, oh be careful! Don’t hurt yourself!”

Why are these warnings only given to me?

Why not Jared, Josh, or Malorie?

                Even now, as an adult,

I still let people,

Who I trust, and think know better than I,

Make decisions for my life.

                I lie, and say it’s just for advice,

Because if they knew the truth,

They’d just say something along the lines,

“Stay true to you.”

                How can I do that?

When All my life,

I have had others,

Telling me what to do,

Never letting me,

Test the waters or learn from mistakes,

Okay, there were mistakes I could still learn,

But really, how can it be, me An Adult?

 When I have no strong standing,

Or sense of self.

but, in all honesty,

Who is Jamie? 

“Inner Struggles” Poem

Look into my eyes, 

can you see my soul? 

the dream I hold inside;

Longing to be accepted,

for everything I am,

All I Believe and hold dear,

and no longer have this burder,

the side of me that I hide, 

Longing for release and freedom, 

and my dreams to take flight. 

The girl longing to break free, 

this curse,

feelings of not good enough,

inadequacy, and self-consciousness,

scared and shy, 

to take the stage, 

and follow her heart. 

Dreams of being able, 

to sing from her heart and soul, 

and to dance with the passion that burns inside, 

To feel beautiful, 

to see her beauty, 

her talents, 

and all that she is,

except in her own eyes, 

To stand there, in the mirror, 

and finally, see her personality, 

the raw beauty inside, 

shine through.

A wrecking ball of bad news; my heart broken and demolished into a zillion pieces.

Today, while in the waiting office of my pain management dr, I was scrolling through facebook, when I suddenly saw something that ruined my entire rest of my day; A friend of mine in St Louis, Missouri, Mr. Mike James, passed away overnight.

I met Mr. Mike James in 2012 while I was in halo traction at Shriners Hospital for Children-St Louis; he worked at Cabela’s and the company would come to the hospital once a month for “Cabela’s night” where their volunteers would bring educational things about Native Americans, animal trapping, hunting stuff (no weapons) just pictures or like duck calls. It was a highlight of the month for all of the patients to enjoy.

I was one of the oldest patients there, so the adults would often talk to me about “Where I was from,” “what I liked to do,” “If I had ever been to a Cabelas,” stuff like that, and a few of them got close with me because of my “spunky attitude,” these included Mr. Mike James, his wife Nancy, and our mutual friend Beverly Duval. They were there through it all- my surgery, my recovery until I went home, when I went back for checkups, when Beverly hosted me for a week for spring break, my first boyfriend, and they had just met my fiance’ and he approved of him, even liked him, and planned on attending the wedding next year. Now he’ll just attend in spirit.

One week and a day ago, we were having dinner with you and your wife. One week and a day ago, we were laughing and chatting and catching up, you and my fiance’ were talking “hunting, guns, Trump, politics, all kinds of things.” Plans were made to attend my wedding next year, talks of us thinking of possibly moving near you and your wife, plans for you and my fiance’ to go hunting together. 
Now you are gone, back to heavenly home and everyone left behind are in mourning. 
You were one heck of a guy, Mr. Mike James. I will miss your comments on my facebook, I will miss seeing you when I go up to St Louis. It feels like a bad dream that I cant wake up from. I wish I could just wake up and this nightmare not be real. It feels like someone punched me in the stomach. it feels like a giant lump in my throat. It feels like my heart has shattered into a zillion fragmented pieces. 

😥 RIP Mr. Mike James. I know you def. earned your angel wings. 

❤ Fly High.

The latest “Twisted Tale” in my journey called life; Surgery coming up fast!!!!

so the latest on my back: I saw dr. Kelly today. He is very optimistic. His plan is if my rods aren’t infected (we did labs), he says he will just open the incision scar where my rods are broken at, clean up my wound, and add in some “dominoes” and add in some extender rods.” It will be “Simple and sweet,” as he put it. 

:p The date is the same, August 14, but I need to be here by the 12th because I need to go to get my central line valve put in on the 13th. If he does what he wants, “simple and sweet,” he doesn’t think I will have as many complications like I did last time bc last time I had broken ribs and pneumonia from that which led to trach, blah blah blah…the framework already there, this is just some maintenance repair! LMAO. 
But whatever God’s will, will be done. 

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