Wedding plan update…still gonna get married..

There’s been a mutual decision between David Piazza and I after all of us discussing things over with Mom, to push the wedding back another year. So it’ll be may 2021.. we haven’t gotten much done as far as planning and in Catholics churches, need to let church priests know 6 months ahead of event.. That’d be next month, plus we’ll be moving into my parents’ house the beginning of 2020. Plus this way, I’ll be over a year post-op and better able to plan and enjoy it. Sorry for any disappointments but tis life ❤️❤️❤️🤷 we feel this will be better in long run.

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Lost… Who is Jamie Elizabeth?

My Mom used to say, that as a child, I had “a smile that was infectious and could brighten others days,” and I was an inspiration with how I handled my disability with a smile. However, over the years, between trying my best to fit in with society’s ideals/standards, trying to live up to what I was taught by my parents or CCD Religion classes, relationships with people I thought of as friends who turned out to be toxic (only to discover my true friends), relationships romantically, stress from struggles as a college student, and the struggles of living on and off with pain or other medical problems, I seem to have lost a sense of myself.

It’s like a constant battle between my heart, my brain, and the outside forces of voices from people around me. I am 28 and enjoy childish things like dolls, stuffed animals, playing games at the local fairs, I enjoy cartoons and childish movies, tea parties, parties, I get separation anxiety and sad when my friends have to leave; it is like I am still a child trapped in the biological fact that I am 28 and some people point it out and judge me and tell me, “You are 28, act your age.” But my question is, “Is it they are just jealous that I am trying to find joy in the things I have always enjoyed?” I am just trying to block out the darkness and cruelty of the world going on around me. It may make me ignorant, but I refuse to watch the news because it’s depressing and angers me, I rather “stick my head in the sand,” and tune it out, and leave it to God. When the world is so sad and depressing, who wouldn’t want to go back to the simpler times of innocence of childhood?

Don’t get me wrong, I still know some things I enjoy: Spending time with friends/family, parties, dancing, theater, crafts, creative writing, etc.; however, lately, I been really tired a lot and seem to stay in front of screen watching movies/tv or YouTube videos. It’s like I have no motivation or anything right now. I have wanted to do more blogging, more YouTube, more artistic and creative, but I just can’t get myself to actually do it, or how to put words out there.

Hopefully, I can rediscover myself again.

One Mountain conquered, but life dealt me another summit to excavate.. *Latest Update*

People often say “The world is a rainbow of different communities spreading love and good, frolocking with others. There are the ones who are the pessimistis who see their world as a never ending burden of turmoil and misery, and then the type that are the “fakers”- The ones who walk around all jolly and happy and wearing a complete “mask” in public. That is me.

I guess you are probably wondering “what is this going on about? The title says ‘One Mountain conquered, but life dealt me another summit to excavate.” What I mean by this is, I had my surgery to fix the broken rods and it was a major success, however during that surgery another issue was discovered; an infection in my rods.

Below are my newest X-rays.

To combat this infection issue, a pic-line was placed in my left arm while I was at Barnes Jewish Hospital in St Louis, Missouri, and put on antibiotics via IV infusions for 6 weeks and then will be switched to an antibiotic pill indefinitely until the doctor sees fit to get me off said antibiotics.

A week after my surgery, on Aug. 21, I was discharged from the hospital to go back to my home in Louisiana so that Medicaid would cover my IV antibiotics; if not, We would’ve had to pay out of pocket for the treatments and it was $120 a treatment (6 weeks of treatments, 2 x a day- so $120 a treatment x2 times a day x7 days x 6 weeks = $10080, and then if we stayed in s Louis but not at the hospital (haven house)= $50 a night x 6 weeks at least = $2100..yeah, I think we made the better decision by coming home…LOL)

Now 2 weeks and 4 days post-op, I awoke to my IV tape rolled up, the pic line area exposed (I am thinking that I was scratching in my sleep). When my fiance went to clean it up and re-tape it, he noticed that the pic line was out more than the doctors like, so we rushed to our local E.R., Lady of Lourdes Hospital. Once there, they were swift about getting me to the back; a nurse, however, decided to remove my pic line from my left arm (which was covered in red splotches due to allergic reaction to the tape) instead of leaving it for the specialist to push it back in. Hours later, the specialist showed up and had to re- stick me for a new pic line in my right arm now, when she said that had the nurse previously not removed it, they could’ve just pushed my other one back in. Now I am back home and my right arm is sore and throbbing because the lidocaine sedative is wearing off and my muscles are aching.

Oh well, I did what I needed to do and I will “grin and bear” this burden I have to deal with for 6 weeks until I can switch to my pill version of antibiotics. I cannot wait for this darn pic line to be out of my arm, but all good things come to those who wait. I will pray for God to grant me patience to deal with it.

Place in the world Poem

At a fork,

 unsure which way to go,

which path to take,

 where is my place?

 The Mark that I will make,

 to leave my name on this planet Earth, 

What road do I travel? 

Where will Life’s journey send me?

stuck at the fork,

 indecisions and unsure feelings,

obstacles and road blocks,

refusing my passage,

another mountain to climb,

another challenge to conquer,

How do i choose?

How do I Find my place?

My place, my mark on the world,

 the legacy I will leave behind,

 How do I find it,

in such a huge huge world, filled with endless choices,

 but physical limitations, that and fear,

preventing me,blocking me,

not trusting and believing in myself,

 blame lack of self-esteem and lack of confidence,

but I’m just a small girl,in a huge huge world.

 One day, I’ll grow,

let go of the fear and obstacles holding me back,

I’ll figure it out,

one day at a time, 

learning and growing each day,

 blossoming, and  blooming into a young lady,

I’ll find my way one day,

and have my found my place in the world.

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. 

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