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.
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.
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? 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.
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?
Today was not great of a day except for one little event during the middle of the day. I had gotten a ticket from Build-a-bear for the “Pay your age,” event and was able to take my “future nieces” (older one being 9 years old and the baby, 9 months.) However, earlier that day was not great.
It started by my 9-year-old “future niece,” going to get the mail at my apartment mailbox; I got a letter from St Louis billing department saying that I was “denied,” hardship assistance and didn’t meet the national poverty requirement (how is not having health insurance besides Louisiana Medicaid, and only living on SSI and food stamps, not poverty?) – side note: called and talked to someone and got it straightened out, after I had already had my anxiety panic attack because “I need this surgery but I don’t wanna go into debt and cause my family and friends to go into debt for it.” However, I had to put that anxiety attack away to go enjoy the build-a-bear event with my fiance’, his sister, her husband, and the two children.
The older sister got a “Siamese looking” cat that she named Melody and their mom picked out an adorable bear and put in a “giggle sound,” that made my 9-month-old “future niece,” smile at; we named the bear Giggles. We probably spent more than we wanted to- because if we’d done just the stuffies with no sounds or accessories, it’d have only been $10, but we got each a sound (Melody had a cat sound and the Giggles had the giggle sound effect) so add in $9 more dollars, and then each got one accessory- the cat got a purse, and I don’t remember what the baby got for hers.) The total was $31 something, so $31-$19= the two accessories costing $12 together so about $5 or $6 each. We covered about $10-15 each. It was worth it. I got to forget my anxiety and play with my “future nieces” especially the cute baby. LOL. I love them both, but adorable babies (when not crying and screaming) seem to make the world go right and make you forget your stress, whereas an older child who may not be able to entertain herself that well, may stress you more.)
After Build-a-bear, we went to eat at Cici’s pizza buffet. It was okay. I watched them feed the baby pieces of brownie and how she made that adorable smile at the taste of the chocolatey goodness, and my 9-year-old “future niece,” wanted me to sit by her. She tells me all the time she loves me, she constantly hugs me and wants my attention. She doesn’t seek that from her uncle; she’s even gone as far as to tell the family, “If DJ and Jamie break up, can we keep Jamie instead?” to which the family always corrects her, “aunty Jamie,” and I’m just thinking “don’t force her to call me something if it doesn’t feel natural to her. she doesn’t call DJ, “Uncle DJ,” LOL.
After Cici’s pizza buffet, we departed ways; they were going see a Movie at the theater where my fiance’ brother in law worked at; I think it was only so the 9-year-old wouldn’t beg to stay longer with me and her uncle at the apartment complex, because at the Build-a-bear thing, when we were leaving, she kept saying, “I wish I didn’t have to go home. I wanna stay longer with yall.” Which broke my heart having to be stern and tell her “no,” because she needed to get back and do her Homeschool SchoolWork and plus I didn’t feel that I could entertain her properly: I was still stressing about that letter, in the back of my mind. I told her, we’d try to get her again before I have my surgery in August.
When I got home, I finally had gotten in touch with someone in billing to discuss the letter about being “denied,” financial assistance. They explained that despite it being out of state Medicaid, they were still going to try to file with them, so currently, my balance showed $0.00. The department explained that if Medicaid denies the claim and if I get another bill, just to call them back and explain how I got another bill, and to reprocess my application for financial assistance. So all that anxiety and worry and my panic attack, were basically for nothing because I am not completely “denied,” just denied if Medicaid accepts the claim. I hate how they word the letters, it makes worry creep in. Mom said it was a lesson I need to learn because if I want a family, I can’t be freaking out like that all the time. She also explained how I am not alone in this “battle,” for my obstacles and stuff with my disabilities, I have family, friends, David, his family, etc. But overall that it is the devil playing with me and doesn’t want me to trust in God my father and savior. I need to tell him, “be gone, Satan. My God, my father, loves me and I am wonderfully made for a purpose. He has led me this far for a reason.”
I will try to do better to trust in my God and savior, my loving father, my almighty creator. Amen.
Also when I got home, it started raining so of course, my back started hurting, so I took a 3-hour nap on Pain meds. After waking up, my stomach decided to reject the pizza (I am guessing it was the pizza: my abdomen was swollen, I was bloated and cramping so bad that it sent pain into my sides, my sides of my abdomen were sensitive to touch, and the really bad cramps left me short of breath. It is slowly getting relief after Tums and Pepto Bismol and just time.
Sometimes I wish my life was easy, but God never promised an easy life- Thank you, Adam and Eve, for original sin messing everything up; if they wouldn’t have given in to the serpent’s temptations, we’d all be happy and carefree, running around butt- naked in the Garden of Eden and not knowing any pain or difference. No bullying, no stress, no strife. *Sigh* Paradise lost. However, we are not alone, Jesus, God’s only son, had to die on the cross for crimes he didn’t commit. He suffered, why should we be any better than him and not have to suffer? the answer is, we shouldn’t. Anyway, I am rambling now. Goodnight, God Bless, and try to find the silver lining 🙂
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.
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.