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anxiety, tears, adorable kids, and pizza; My “Today”

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 🙂

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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.

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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!!! 

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so disgusted and embarrassed by this! Boycotting my little pony? its 2019..ugh

So a lot of People have no issues with Disney movies or children’s programming promoting heterosexual “need a man/prince,” mentality, but as soon as something airs with homosexual relations, everyone that is crazy traditional religious is all up in arms and “grab your pitchforks and torches, burn the blasphemers.” It’s 2019 people, there should be no more homophobia, transphobia, disability-phobia, dwarf-phobia, racism, sexist ideas, or any of that stuff. The old testament was before Jesus’ time, the new testament was around Jesus teachings but actually written by “followers” of Jesus. Who knows, they could have thrown in their own views or maybe when it was translated from Hebrew or whatever language, something got “lost in translation.” I mean, think about it, Jesus hung out with the sinners, prostitutes, the “scum of the scum,” as people viewed them. He taught love and acceptance. Not trying to change their ways by saying “You’re  GOING TO HELL!” he did it through love, he made them want to turn from their sins, not try to force it. 

Today there was an article on WAFB Channel 9 about a My Little Pony: Friendship is Magic Episode that featured the character, Scootaloo, being looked after by her same-sex couple aunts; Aunt Holiday and Aunt Lofty. First, it was Arthur about Mr. Ratburn and a gay wedding, and now this. People were all pissed about both “It isn’t appropriate for children,” “Protect our children,” “Satan’s agenda,” blah blah blah. 

I may have been brought up Catholic all my life, and I still love my religion, faith, and God almighty, but the organization has its own faults ..*Cough* *Cough* Pedo Priests getting frisky with the altar boys or whatever. We are all human, we all have faults, we all sin. 

But the media are doing things like this to try to be relatable and give representation to minorities and their families: Homosexuals(The child or the parents), bi-racial (parents or child), single-parent households, being raised by someone other than parents (Grandparents/uncles/aunts/cousins, adopted, orphaned, fostered, etc.), transsexuals (parents or child), those with disabilities. With more representation and showing that these people aren’t weirdos or “freaks,” and that they are just like everyone else and shouldn’t be targeted, harassed, bullied, etc. over stuff they can’t control. 


Since a lot of parents tend to shove their ideas and beliefs down their children’s throats, and not teach their kids to not be little assholes, its up to society to also push in some compassion and empathy because there are many walks of life and no one should be bullied to the point of trauma, depression, homicide, or suicide.  

https://www.wafb.com/news/national/2019/06/12/my-little-pony-brings-same-sex-couple-latest-episode/?fbclid=IwAR0aVMBrRNi39ZEKJIbFNmv_0w6LMevvOF5OHdjuUbKScVpgnqCnhK8GPd8

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Our Crazy “Twisted” Rollercoaster Love story=David+Jamie (old written piece)

Once upon a time, there was a young woman named Jamie. Jamie thought she would die alone because she wasn’t normal; she had many medical disabilities and low self-esteem as a result of being bullied most of her life. She ended up dating a guy with spina bifida who made Jamie realize that love was possible, but she thought it would be with someone with disabilities because they were the only ones who understood that majority of the world was against them. However, Jamie had been raised to be independent and the young man with spina bifida relied and blamed everyone else for his problems, so Jamie, for the sake of her sanity, ended it because she was constantly nagging him and trying to change him, which wasn’t good; she didn’t like the person she was becoming.

               Once again, Jamie thought she’d die alone. One day, she decided to muster up courage and see what would happen if she put herself out on the dating sites; and when someone would message “hey beautiful,” she would reply, “are you blind, being sarcastic, or just crazy? I am not beautiful.”

               During one of these encounters, a young man from Simmesport, Louisiana; an hour from where Jamie lived, contacted her. They talked via message on the dating site for a while and then he asked her if they could meet. They met face to face, at La Hacienda and it was a good date, however, Jamie was still hesitant and shy; she would check her rearview after the date to make sure he wasn’t following her.

               On their “second date,” they went to a production at Opelousas Little Theater; Rocky Horror Picture Show. Neither Jamie nor David had seen the movie and didn’t know what to expect from the show…let’s just say it was Interesting, funny, and a little disturbingly awkward (at least for Jamie, not sure what David thought.)

               He took her to meet his family and they instantly fell in love with her; especially his 7 year old Niece, Serenity, which Jamie and David try to include in stuff ocassionally to get her out of the house.

               They continued to hang out and soon a love started to blossom. The young man was named David. David made Jamie laugh and smile, and some of her “quick wit come-backs” had returned; something her mom commented that “Jamie had lost over her years.” He was a great cook and baker, like Jamie. He was motivated, and went to church with her (something TJ did not do) . He was most, if not all, the things Jamie had dreamed of when she dreamt of love, but once she realized she was different than other girls, she gave up that dream. She had always thought “if guys only want dream girls with hot bodies, then I am their nightmare.” David changed that point of view somewhat, although Jamie still questions why he is with her when he could have anyone.


               Now the question of this journey will be whether David can break Jamie’s shell of low confidence and self-esteem, and make her see her “true beauty,” that he sees in her? Only time will tell or he may never break her out of it completely; a year later and she still questions why he is with her, why he loves her, and she is constantly worried that their future will be bleek and david will have regrets later on. What if she can’t give him children? What if she loses her SSI because they get married? what if his paycheck isn’t enough to support them until she can get her degree and make money herself? Worry, worry, worry, sometimes I wish I could turn my mind off! I love David but when that doubt gets into my head, I push him away because I worry I am not good enough for him. I need to stop and realize Love can conquer much, and doubt is death. Maybe One day I will. When I am not worrying and letting it get in the way of our relationship, the relationship is great fun for the most part. David loves to cook together in the kitchen. Sometimes, he will come up behind me and hug me or sometimes tickle me while I am doing something in the kitchen (cooking-wise or doing dishes or laundry- our washer/dryer is in part of the kitchen.) We play fight, I’ll play-punch him, and he will hold me and hug me, or sometimes pick me up and hang me upside down or over his head (I am terrified of heights) but I never “surrender.” I keep “fighting him.” Other times, we enjoy snuggling on the couch to watch movies together, and play “popcorn catch (which I suck at)” but it is a great excuse to start a popcorn fight (throwing popcorn at each other, which Beignet enjoys cause she gets to eat the popcorn when it hits the floor.) After a year we are still learning each other; our views (that sometimes differ which cause some arguments but we end up “agreeing to disagree” whether it be his patience level with his niece, Beignet sleeping in the bed, politics, religion, etc.), what things he enjoys/what things I enjoy, favorite foods, ideas for our future, etc. Our summer vacation in Hot springs was so much fun and I am glad my parents let me bring him along to our condo. It was a great bonding experience, especially when we went to the superhero and star wars museum! That was fun; dressing up in the Jedi robes and playing with the light sabers, hitting each other with them. HAHA! It is so funny how he was able to get me into star-wars, something TJ tried and failed to do. Guess David just had something a little more special, I don’t know.

 One thing that really gets on my nerves though is that I look so young and he looks so much older (even though in truth it is only 6 year gap), people think he is either my dad, my older brother, or worse, a sexual predator; “Aww what a great dad,” “what a sweet older brother,” or “what is that old man doing with that young girl?” It is even worse when my mom is with us, people then think him and my mom are married and I am their daughter. I am tempted to wear a sign or make t-shirts for us that read “I am over 21, he is not my dad nor is he my older brother and he is most definitely not a sexual predator. Mind y’all own business and stay out of mine (maybe add a middle finger for effect Ha ha.)

 All I know is I truly am happy with David ¾, (if not more) of the time with him. I can’t see my life without him.

We got engaged in December on Christmas Eve when he proposed to me at my parents house. 🙂 The wedding date is set for May 23, 2020 unless it has to be pushed back due to medical recovery from my surgery.

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Can’t sleep so I am going to ramble- March 2019

After staying up till midnight, then going to bed only to toss for two hours uncomfortably, I came back into the living room while my fiance’ slept. Normally, he’d still be up as well, doing his best to help get me comfortable(sometimes its out of either of our control),  but he has to work the rest of the week with a new job he just started so I put on a “brave face” and hid my pain from him.
My wound that I have been dealing for almost 2 years feels a tad swollen and it itches around it. It looks really red in the pictures I take myself, but again I don’t want to say anything to him because knowing him, he will ditch the job to take me to ER or wound care center.
I am also hiding it and not saying anything to Mom, because she is busy with planning a baby shower for her niece Heather. doesn’t have time to worry about little old me and my wound. I know that I need to get it seen about and it could be dangerous, but at the same time, I hate being a burden. 😦 it’d be so much simpler if I wasn’t disabled and didn’t have this stupid wound. I am conflicted and hiding something that could end up being very serious.
I know that once they read this (if they read this,) I will get some sort of lecture, but this is my feelings sometimes; that I am a burden. If it wouldn’t be for my friends and family, I’d probably have “offed” myself years ago during middle school or high school. There are times when doubt creeps in.

1.) With my fiance’:  will never have a normal life–they may not have kids, they may be stuck taking care of me the rest of their life, I won’t be able to cater to them like a wife should, etc etc. Why does he love me? Why is he here? He could be with anyone? Why does he want some virgin girl with barely any boobs and a little butt, and short as all heck with disabilities out the wazoo?

2.) My parents: I feel like sometimes I am a disappointment(more with my dad). I don’t know what dreams they had for me (some parents have their kids futures all planned out). I am pretty sure if they had a plan for my future, it wouldn’t have included all these disabilities, dr appointments, and “curve balls of life.”

3.) I am really immature still. I am almost 28 and still love dress up, cartoons/kids shows and movies, the Children’s Museum, riding 4wheelers and go-karts and golf-carts, I love animals and dressing them up in clothes/costumes, I still think about my dolls and my barbies. I can still get “in touch with my inner kid,” easily and my dad “rags me” about it a lot. I don’t watch the news at all- I see enough of it on social media and it depresses me (My fiance’ says I need to “get with reality”- No thanks, if reality is watching the news, then I rather live in my little fantasy bubble. I already know things are messed up and crazy in the world. 😦 #ITrustInGod to fix things. My mom seems to get me the best. She doesn’t mind me being immature. Sure there are times when we see things differently, but she doesn’t rag me on stuff I can’t help; like my “immaturity.” Come to think of it, once I reached age 10, was when Dad started trying to get me to “grow up a little” and Mom always defended me saying “let her be a kid as long as she likes.” (I am sure that’s not her feelings now, but she knows I “adult up” and take care of what needs to get completed.) #BestMomAward

4.) Life has beaten me up and I lost a lot of the fun-loving and creative person I use to be. I am more introverted, self-conscious, anxious in public, feel like I wanna hide when I get stares, or when people are rude/discriminatory towards me or someone disabled, I am ready to throw down and fight. I don’t know. I just don’t feel like my old self. I feel like I need to get back to the essence of who I really am. I need that spark and zest for life, back although it is kinda hard when you living on pain meds and sometimes even that doesn’t help. Maybe once I get these broken rods taken care of, maybe my pain will diminish and I can get some of that joy for life back. One can only hope.

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Answers Finally! But bad news, another pothole plot-twist: Broken Rods (January 2019)

Due to my wound not closing up, we did x-rays and I sent them off to the surgeon who did my back surgery and he confirmed: broken rods and my kyphoscoliosis deformity was worsening. It would explain my increased pain each year, as well as why this wound isn’t closing or cooperating correctly.
Downside? My surgeon can’t accept Medicaid and it is the only insurance I have. To self-pay would range from 250,000 + dollars, not including transportation costs or lodging or food.

I am blessed, however, with an amazing fiance’ who immediately jumped on the computer to start up a gofundme. He says we will do whatever it takes to get this seen about. We also looked into getting a referral to LSU medical hospital in Shreveport. Also blessed by having the former care-coordinator for my surgeon as a contact, and she reached out to the surgeon who took over my surgeon’s position in St Louis. (The one who did mine in 2012, moved his practice to New York). There is something called “hardship assistance” and I can try getting that. We will still have the gofundme just in case.

So until this is solved, I guess wedding plans are on hold??? I need to get out and start prepping my body for revision surgery.

Link for the gofundme: https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring?fbclid=IwAR1eoT8HJHiIHSc6bX9Ej31bO0mhl5TIETaFEvpw8iXrHhme23ZlKcbbdWk

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Another Pothole bump in the road Plot-twist: More medical issues. (January 2019)

know what I hate? people who don’t mean what they say…
I have been fighting a wound on my back on my incision scar from my back surgery since May 2017; it closes 3/4 of the way, then it reopens due to a hyper granulate of scar-tissue or something. The Dr in wound care has tried everything from “packing” it, cauterizing it, going in and taking out what he thought was the problem. He is at a loss, so he asked the orthopedic if he’d see me and he said he would. Well now, when they try to schedule me an appointment, the orthopedist’s office says they cant because I have Medicaid when the doctor already said he’d see me! 😡 
So now they suggested, getting my medical records and going into the E.R. at the LSU hospital in Shreveport. The E.R. because the office is backed up for appointments. 
This thing has been a giant pain in the butt, oozing all the time, wearing gauze and paper tape or bandaids, or spray/washing my shirts due to the oozing, only using towels once after bathing which increases washings; plus maybe that’s why I am so much achier now. I don’t know, but man this crap better be taken care of by my wedding next year. 
In other news, I am being sent to an oncologist (just the word freaks me out because usually they are associated with cancer.) My white count has been high since May 2018 right after the procedure to clean up my wound, and my GP couldn’t figure out why. could it be the wound being infected or could I have cancer? I do bloodwork on the 17th. Keep me in prayers, thanks. 
All these medical issues are one reason I am sitting out this semester of college.

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Already a Bridezilla..Planning a wedding 1.5 year away. (January 2019)

I am already turning into a bridezilla. I am stressing over trying to find a venue that doesn’t have a capacity limit of 300 or less people for a decent price, with a kitchen to use, that allows us to self cater and self- booze. 😦 it is really hard.

Then trying to figure out who to eliminate off the guest list when I feel so close to everyone who ever came in my life. My love runs deep, and it feels like cuts of betrayl towards them when i cant invite them to my wedding day. 😦

Then to top it off, I asked my fiance’ 3 days ago if he had an idea for a first dance song..”no”. so I set out on a quest; a quest to find the perfect first dance song. I spent 3 days and resulted in 2.5 pages of potential songs (Sure, a good portion of them were Disney songs; I am a kid at heart, quit judging!).

 Today, I started to play them and 10 seconds into them “no, no,no.” to several of them, and then says he wants “that Bryan Adams Song ‘Everything I do,'” Seriously?! I asked him 3 days ago, I spent 3 days searching! and I loved alot of these songs.

I hate feeling stressed and about to blow up, so I am walking away for now. I will retackle it later after some goodnight sleep.