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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What is Normalcy?

What is normalcy?  Normality is the condition of being normal; the state of being usual, typical, or expected, but what is “normal”? The definition of Normal can be defined as conforming to the standard or the common type; usual; not abnormal; regular; natural.  As humans, especially around the ages of adolescence, all the way up to adulthood, we seek to be accepted; to be “normal,” but who are we to decide what is and isn’t normal?

                If someone is different than us: whether it be in beliefs, religions, color of skin, sexuality, behaviors, physical appearances, etc., we make judgments and assumptions. Due to culture or who we grow up around, sometimes if we see a male with black skin, we assume they are dangerous.  If a child acts up in the store, we assume they need butt-whooping and are lacking discipline, when really there could be underlying issues such as Autism or some other mental disability. If an Autistic child has a sudden “spasm” of energy and bounces around, we judge it as “weird,” or “funny,” and often times our teenage “normal” children mock and make fun of such behaviors.  If we know someone is homosexual or “gay,” we automatically think/judge that those people are “going to hell,” due to religions’ teachings.  We think “our way” is the right way and all or any other ways are all wrong, but God made us all different with different talents and gifts, shouldn’t our differences be celebrated instead of us being crucified and stoned to death for them?  No Matter the differences, we are all human and we all bleed the same. Who are we to Judge others, when we as humans, all have sins and “Skeletons in our closets”? We are not God, even if you don’t believe in him, we have no right to judge others when we have our own faults. Why can’t there be more love in the world and less hate, bullying, and ill-will towards others; like the Black- Eyed Peas’ song, “Where Is the Love?” We as a species need to learn to “drop the arms” and learn to hug it out instead, or we will end up fighting ourselves into extinction.  I, for one, refuse to be “Normal,” I want to be Abnormal. 

“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.

Medical Headache, incompetence, and idiotic rules

As you all are aware by now, yesterday I went to Vidalia for a pain management appointment and found out that I have Osteoporosis forming. Today, I called my Surgeon in St Louis, Missouri, to find out if it would affect my surgery.

Missouri office: Can they fax it to the results to us?

Me: I’ll call and ask.

Vidalia office: we need a release, however, we can send the results to your referring doctor.

Me: Okay.

Referring Dr office: Oh, we can’t fax other doctors’ records.

*Facepalms* This is why the medical field and disabilities suck. Can’t get help, what so ever. You are a freaking Dr. Office, do your job!

I called the St Louis office back and explained the situation and they are going to call Vidalia and see if there is something they can do.

Please help out! Go Fund Me Page

please share and pass around on all social media platforms. My surgery in August is coming up fast! Preop is July 16!  Thanks.

https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring

Much appreciated, Thank you!!! 

another sleepless night; chronic pain and tears.

A bad storm passed through Louisiana this week so it has been quite a bit of sleepless nights for me lately and then add in the dreaded once a month bullshit us females have to deal with, adding in stress, anxiety, hormones, emotional roller coaster, all that (sarcastic tone) “fun.” Tonight, I tossed and turned for 2 hours while my fiance’ just lays next to me snoring; sure, I could wake him up and make him suffer with me, but that is selfish plus he works to provide for us, so I guess he needs the sleep more than I do, but it sure would be nice to be able to talk these things out instead of blogging them.

I have a mattress that can elevate the head, it helps with migraines and sometimes my upper back (then I gotta deal with my lower back and hips hurting), but tonight my upper back is hurting and I am not even gonna use the head-elevation because lately it has been making my fiance’ back hurt in the morning; which sent me down the dreaded “rabbit hole” of the uncertainty of a future together: What if I become bed-ridden, what if he has to help me with everything more than he does now? That isn’t what he signed on for! It isn’t fair to him. I know he made a commitment to me and he constantly reminds me of it anytime I start crying and freaking out about how much pain I am in and the fears that sends into me about how uncertain my life and future are; I just don’t want him to have regrets or resentments. I love him, I really do, but when these fears kick in, I go into flight mode and tend to push him away, thinking I am saving him from being stuck in a sucky future with me and my damn disability. How can I expect him to accept it and what it does to me, if I cant even accept it completely myself?

If there was a pill created to make me “normal,” like everyone else in society, I would take it! Even though I also feel like having my disability has made me a well-rounded, wise, empathetic, compassionate, supportive, loyal, passionate person. Does it make me a bad person? Why is it I can be a support system and cheerleader for others with disabilities but yet I cant even accept myself completely? Does it make me a hypocrite? Maybe its just the pain talking; well the pain and the damn devil. I need to really work on myself and loving myself for me; whole-y and completely. Maybe after my surgery to fix my rods, maybe my pain will be better, and I can start being happy again. One can only hope.

A body like a rollercoaster poem-(old piece)

A Body Like a RollerCoaster:

               A body likes a rollercoaster

Lots of twists and turns,

A winding track,

Many different options to explore,

Many different twists of the curves,

Twisting one way,

 going up a giant incline,

Slowly climbing up, up, up, to the very top,

It can be quite a tiring experience; that long trek

Then the scary part, the drop!

You drop down,

going faster and faster,

gaining speed as you drop down the tracks

Another twist in the tracks,

 then a loop upside down,

You start screaming!

               With lots of ups and downs,

“Bumps, stumbles, and falls,”

“bruises and scars,”

Not just physically,

The “rider” (patient) can also be traumatically scarred too,

Turning life upside down,

Like loops on a rollercoaster,

Making the victim,

The patient, plagued with this disorder

The limiting disability known as Scoliosis,

 scream and cry,

tired and emotionally drained,

“Let me off now,

Before I die.”