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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“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.

So annoyed with rude people…

I had my go fund me page since Jan or Feb. people have been generous and I thank them (especially the author of “Wonder” who generously donated $1000.) However, I share it constantly on all my social media platforms and a few people share it, but today made me so sick to my stomach.

I shared it a group on for people with similar disabilities and one of the members felt it was her responsibility to “set me straight.” – Evidence down below: Sally Hockman is a snooty and rude individual. She doesn’t know my story. She doesn’t know what I deal with on a daily basis. “Many people have broken beg for money,” but do these people happen to have great health insurance or doctors who take no matter the state? ….some people aren’t lucky!

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. 

Share my go fund me please!!! https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring

A pretty great Sunday :)

I woke up with a minor migraine, but no level 10 pain today in my back- could’ve been that I knew Mom was bringing my sweet Beignet (my mixed-breed rescue dog) for a visit; ever since finding out about my broken rods, she’s been living with Mom due to my not being able to hold her leash for walks. Mom dropped her off around 10:30 a.m. (Mom went to Mass). 

Mom came back from Mass at about Noon and asked what David and I were doing for lunch. I said, “we have leftovers, but it didn’t sit well on my stomach.” Mom asked “what do you want to do,” to which I replied, “I know I always say it’s blasphemy to have Deano’s pizza without Dad, but…” Mom laughed and replied, “but you want it?” To which I nodded my head. She got a giant 3-type pizza like we normally do and it was delicious! She then left to go get things from my Uncle and Aunt’s house and was going to come back afterward to pick Beignet up to go home (She came back at around 4ish.) 

I got to spend about half the day with my sweet Beignet 🙂 We snuggled, practiced some commands, played with her toys, all 3 of us took a walk (David, Beignet, and I- David held the leash). Was a great visit with her, and I was ready to see her off at 4ish because I wanted a nap (didn’t want her to leave, but I knew she was gonna leave anyway- so I wanted to treasure the time I had with her). 

While Beignet was here, I had very minimal pain, but it must’ve been a distraction or something because a half hour after she left, I had to take my pain medication because it hurt really bad again. *Sigh* 

At least half of my day was good and sunshiny, that is better than nothing at all 🙂