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.
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.
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.
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.
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?
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?
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?
All my life, I would like to say,
I was a “normal” child
Could run and do all the activities like the others,
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?
What is the difference
of people who are handicapped and special needs
are they not all people too?
why must we be judged by our appearances, and
making us feel alone in the world.
why do we constantly put stress on each other, and
why cant we all just get along?
what is the difference?
don’t we all have souls, arms, and legs?
whats the difference?
just because we look different,
doesn’t mean we are a different species, mutants or freaks of nature.
What is the difference?