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Latest in my “twisted Tales” Journey-May 2019

I received a letter in mail today from St Louis. No info about if I was approved for hardship assistance/Financial Assistance, probably will call about that, but the letter was to confirm my pre-op appointments. justin case, please pass around my gofundme page https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring

Tuesday July 16 at 10:45 a.m., I will have a meet with Dr. Kelly to discuss surgery and sign my consent paperwork. Also on July 16, at 1 p.m. I will be meeting with the Anesthesia Department to have my pre-op testing completed.

It’s getting more real! August is gonna come so quickly!!!

In other news, we have David’s niece, “Sky-baby,” for the week and also its the apartment complex’s resident appreciation week. We had ice cream and waffles today, tomorrow is trivia and Pizza, Wed. is breakfast in the morning while supplies lasts.  Thursday they are gonna pick up our trash from patios in the morning and afternoon they offering free car washes. Friday is the crawfish boil! I’m so excited to enjoy these events and even more we get to share these fun experiences with “Sky” ❤ we also gonna try to go treat her to Cajun Heartland State fair at Cajundome or we could go to Children’s museum, Girard park, a movie at theater, go show her the turtles and alligators at Cypress Lake at ULL; There is also the option of Go Kart Ranch or Bowling<3 And she loves swimming. 🙂 So just swimming and me doing spa-makeup and dress up, and board games with her, she already has fun 🙂

#AuntJamieandNieceBondingTime #ShelovesmeMorethanherUncle #ImtheFavorite LMAO. I love my future niece and she loves me. She doesn’t notice or care that I have a disability; all she sees is someone who likes to have fun and entertain her and isn’t as impatient with her as her uncle is. She sees someone who doesn’t mind acting like a child but will adult when they need to. ❤

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Happy Birthday, Dad! Youtube Video- May 2019

To My dad: For some fun times and those rare occasions when we don’t fight. You gave me my personality, blonde hair, sense of humor, and my ability to live as independently as possible; thanks for pushing me, despite having a disability.  Thanks for everything Dad. I love you.

I know I give my dad a lot of grief, but he has actually taught me some pretty cool skills. As a child, he would take me outside, and I’d watch him do wood-working things with the hammer, saw, etc. HE even let me work the saw sometimes! I practically grew up going to Lowe’s or JB Sandoz Hardware store, quite often! Another thing I remember doing often was when he’d be “on call” for work, and he’d take me with him; at his office there was this “magic dry erase board,” that would print whatever was written on it, and it could move to a different/clean board; I just was so fascinated by that board! We also went to Waffle House quite often for breakfasts and went eat at Deano’s Pizza a lot too; I still joke with mom, “We can’t go to Deano’s without Dad; that’s blasphemy!”

Another thing I remember doing with dad was the first time that he took me “crabbing”. Crabbing is where you go catch crabs, and no I don’t mean the STD; I mean, Crabs, the seafood.  We had to leave really early in the morning, so just like for Shriners trips, I would pack a bag the night before, and just change in the backseat. I remember we had ham sandwich supplies to eat lunch, and the darn seagulls were chasing me for my sandwich; finally, I just threw the sandwich and let them have it. I had so much fun, 10 years old, running on the docks to check the crab traps; getting all excited and jumping up and down, “DAD, There’re some crabs in this one!”

Another favorite memory with dad was when we’d go to go kart places; like the Kart Ranch in Lafayette. We’d ride go-karts, Dad always had me ride with him because we are both super competitive; I could trash talk the other people while he drove super-fast, making the hair blow in my face. While there, we also would do mini-golf and I always got a pink golf ball.

The funniest memory was when we were at my Aunt Sandra’s house in the country, somewhere in Texas. We went 4-wheeler riding and went fishing. I don’t mind the fishing, as long as I don’t have to touch them and they don’t flop around near me. I was scared of fish, for Pete’s sake! (What wasn’t I scared of as a kid?!)  Anyway, Dad had caught a fish, and it was on the back of the 4-wheeler and I was sitting on the 4-wheeler; the fish starts flopping closer to me, I scream! It’s funny now, but I was scared to death when it happened. Another memory was when we were riding 4-wheelers (ATV); Dad kept jumping the hills on them, and he lost his glasses in the fields after he had jumped one of the hills. I liked riding the 4wheelers: The wind in my hair, the thrill of jumping the hills; although the landing afterward, made my stomach jump into my throat!

Yes, Dad and I have a…Complicated relationship, but when we get along, it’s golden. I love him, even if he does work my nerves, and I do treasure these memories and things he’s done with me. I will never forget them because they are always in my heart, and I ask for some repeats now and again, like crabbing, which we should be going do again real soon; yay!  

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Two youtube videos dedicated to Mom on Mother’s Day-May 2019

Love you Mom, happy Mothers Day!

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Ode to Mom on Mother’s Day- May 2019

Ode to Mom.
There are many ways to describe my Mom; the best way is through several songs lyrics.The first song, Mom by Meghan Trainer. 
“Ain’t nobody got a mom like mine. Her love to the end, she my best friend.” My mom is and always has been one of my most loyal best friends. She is there when I have “girl drama,” when I am “hating on myself,” because of my disabilities and pain, and sometimes she is just there to make me laugh or get me out to go have fun.“All the times that I cried, she made me feel better,” it’s true, whether it be spiritual guidance with my questioning God’s motives for my disabilities, girl drama, relationship drama, etc.“She taught me how to love myself,” she always told me, “Normal is overrated,” “This is your normal,” “God didn’t make a specific mold for people, that is society trying to fit everyone in a mold,” and the most important, “love yourself  first, then friends will come, and after that, eventually relationships. You should always come first.”The second song, “Mother like mine,” by The Band Perry; “There’s no safer place I’ve found
than the shoulder of her white night gown,” when I was a little child and scared, she was always there to dry my tears or rock me/cuddle with me. I always felt safe with her. Safe to be my true self without judgment- I could be silly, dance, sing, whatever, and knew she wouldn’t clown me like my peers, cousins, brother, and even dad, might have done.“So the wars would all be over
‘Cause she’d raise us all as friends,” rings true because she always taught me “treat others as you’d like to be treated,” and didn’t spout off any type of negativity towards certain religions/races/ethnicities/ other differences like some families shove down their offspring’s throats.“Don’t go away, don’t go away from me,” definitely rings true because from a very early age, I was always scared of Mom dying and leaving me all alone (even though I had other family-dad, my brother, etc.) I love my other family, but nothing beats the love and support of my mother.The Third song, “Because you love me,” by Celine Dion. “For all those times you stood by me,” she has always been there to encourage and support me whether it be through my medical tribulations, my dreams, struggles in school, or whatever. She has always supported me unconditionally.“You’re the one who held me up, never let me fall,” when I was a weak tiny baby and didn’t meet my walking milestone on time, she wouldn’t give up; she would get on the floor and massage my legs, hold my hands and help me. When I was tired to walk and until my legs almost dragged the ground, she’d carry me. When I would “dump on myself,” she was the one who would “hold me up,” and bring me back out of “depression” because she suffered from depression and didn’t want me ending up there.“You’re the one who saw me through through it all,” no matter whether it be something related to my disabilities, challenges, illness/sicknesses, fights with friends, etc., she always saw me through it all.“You were my strength when I was weak
You were my voice when I couldn’t speak
You were my eyes when I couldn’t see
You saw the best there was in me
Lifted me up when I couldn’t reach
You gave me faith ’cause you believed
I’m everything I am
Because you loved me” – When I wanted to give up and throw in the towel, whether it be schooling, friendships, or other obstacles, she was my strength. When I was too scared to defend myself, she was my voice. When I don’t see things, but she does- she is there to give me advice and help me see things, but also she leaves the ultimate decision up to me. She always sees the best of what I could be.When I couldn’t reach, she would pick me up at times (when I was little, now she really can’t because we are about the same height LOL!) She gave me faith because she has an unwavering faith and belief, where as I tended to struggle. She is the reason why I am who I am.“You gave me wings and made me fly”- whatever my dreams, she supported them and would do whatever she could to help execute my dreams and hopes and wants.“I lost my faith, you gave it back to me”- when I struggled with my faith and questioning God about my disabilities or my purpose in life, she was there to help me.“You said no star was out of reach”- she always told me I could do anything that I put my mind to. 

“I’m grateful for each day you gave me”- I am grateful because some people would have aborted me, she didn’t. 

“I was blessed because I was loved by you,” and she taught me how to love.The last song doesn’t really describe our relationship, but I have to include it because of the memory attached to it and that song is “Brown Eyed Girl.” It is mom and I’s favorite song because when I was really young (I think 3 years old or so,) when I’d get home from preschool or days I didn’t have preschool, Mom would put on the song and we’d dance together in the living room and even today I tell her, “I will always be your brown eyed baby girl.” 

As I’ve grown older, I’ve come to realize that not everyone is lucky to have wonderful mothers, in fact, some peoples families are so dysfunctional that by adulthood, they’ve pretty much cut off their families completely; Even now, my mind is completely blown away by this and can’t comprehend it but it is because I was always surrounded by love in my family.
I love you Mom, you taught me so much, gave me such a wonderful and enriching and somewhat “normal,” childhood and I hope I can be at least half as great a mom as you were to me, when/if I ever become a mom. ❤ ❤ Happy Mother’s Day!!!

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the “latest and not so greatest”- May 2019

the latest update from my Scoliosis Journey: St Louis (Dr. Kelly’s office) called. He still bouncing around about the simpler (just fixing surgery) or the bigger surgery. I told them Dr. Lenke said he was gonna talk to dr kelly and how he (Dr. Lenke) suggested the smaller surgery. Apparently, he hadn’t talked to him yet, or the nurses weren’t updated. 🤷‍♀️The nurse made a note and said if we do the smaller surgery, the date she has is Aug. 14(two days before the anniversary of my surgery in 2012) and the pre-op appointment would be July 16. They want me to do a pulmonary Function Test (I am having them fax the orders to my gp- because my Respiratory Doctor said and I quote “didn’t see it as a necessity” because more than likely they would “do one before surgery,” and I “have my CPAP machine this time.” 🙄
in other news, I went to a pain management appointment on Monday, April 29. It was okay aside from spending all day there. It was just a consult. Typical dr. appointment- xrays, weight, and height, looked at my back, tested my reflexes, all that boring medical stuff. lol. I go back on May 28.
Also, Still fighting with that stupid wound on my incision- it opens, almost fully closes, then reopens. It’s oozing bad the last few days, going to wound care today at 1. The wound probably will keep giving me issues until I get the rods fixed. 🤷‍♀️🤷‍♀️🤷‍♀️

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Latest update in “my twisted journey” called Life- April 2019

I’m just got off the phone with Dr. Kelly’s office in St. Louis. They offering two surgeries. One to just revise surgeries. And one to take a bone out of my spinal column area and make me straighter. Longer surgery would be Sept. Smaller surgery would be August.. Longer surgery would give better balance. She’s gonna talk to dr Kelly again.hes out of town right now, so it’ll be sometime next week. Smaller surgery , if I’m not balanced enough, rods could break again. But longer surgery is messing near my spinal column and could paralyze me #decisionsDecisions 🤷‍♀️🤷‍♀️🙏🙏 I dunno. I mean id like to be straighter and not risk rods breaking again, but also like being able to walk and stuff. And also don’t wanna risk another trache.

🤷‍♀️
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My thoughts on “Touched by Grace” Movie- April 2019

 My mom has amazon prime for a while and gave me her account info so I could watch some movies. One movie I had been wanting to see was “Touched by Grace,” a movie that I consider a cross between “Carrie” and “Wonder,” because the mean girls of the movie pull the same kind of prank on Grace that they did to Carrie, except they didn’t pour blood on her like in the mean girls in Carrie.
   The movie doesn’t end happily. Even sadder is there are people like that out there in real life who bully those who are differently abled and can’t help being differently abled. It teaches good lessons though. But the saddest fact is this is something that people of different races, religions, nationalities, disabilities/non-disableds, face bullying each and every day. Even Jesus was “bullied” by those who thought differently and were jealous of him. He was wrongly persecuted and sentenced to death. Those who are differently abled usually have multiple problems along with their main diagnosis, whether it be seizures in addition to their autism ordown syndrome, bad hearts and in need of donors, asthma, etc. We never know what could be a consequence of our actions. A “harmless prank” (bullying) could end up costing someone their life. #EndBullying#EndHate#StoptheViolence#WeareAllHuman#TouchedByGrace#Wonder#TreatOthershowYouWanttoBeTreated#GoldenRule

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update from last post- April 2019

Just got off the phone with Dr. Kelly’s nurse person (dawn). She said that she hasn’t gotten the CT CD in her possession yet, despite that the tracking on USPS said it was delivered Friday. She says not to worry that it doesn’t mean it wasn’t delivered to a wrong spot, she said more than likely it has arrived, but the mail department has to sort through the mail and then bring it to them. She said as soon as she gets it, she will bring it up for Dr. Kelly to look at and then call me ASAP.

Will keep yall posted. If I haven’t heard back by Wed or Thursday, I will call them back again

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Gonna be 28 in 13 days!!! ahhh!!! – April 2019

I cannot believe that my birthday is in 13 days and counting! I cannot fathom that I will be 28 in 13 days. It came too quickly. All I want for my birthday is a simple little get together at the apartment pool (If I am not in St Louis having back surgery yet.) I hope I get it done soon though, and I hope I am in and well enough to go to my cousin’s wedding in June (but his fiance and he both said they understand if I can’t.)
Just playing the waiting game; I called the hospital this morning and left a message to see if they received the CT scan disk. According to the USPS tracking, it arrived at its destination Friday, but that doesn’t mean they’ve checked their mail or anything yet; So just waiting for a call back now.
Don’t know how much longer my pain meds will work, they are starting to require more doses; David (my fiance) used the wrong word the other day. He used “Addicted” when he meant “immune” oooh boy did I give him an ear full! That is one thing you never ever ever use with someone who suffers with Chronic pain. That is one thing we constantly worry about when we have to take pain meds. People thinking we are “Addicted.”
Yeah, if I could let people feel what I feel on a daily basis with just a touch, we’ll see how many people think I’m “lucky” because I get to use handicapped parking, hover-scooters, etc. We’ll see how many people think I’m “addicted” to my meds.
we’ll see how many think I am just “lazy”.
…great now I wish I had that ability. darn it!

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Who says we don’t live in an ableist society? *warning:Rant!* -April 2019

Who says we don’t live in an Ableist Mindset society? Those people are either in guilt or denial or just too blind to see it. Society considers Ableds the norm. Look around:


1.) PreBirth Screenings: what is one of the first things said after the diagnosis. Usually, options to abort the pregnancy. The ones not in prebirth screenings and are later diagnosed: doctors tell parents to institutionalize, medicate to the point some kids are zombies or some therapies like shock therapy or the like. or what about school- when some with disabilities are segregated off to “special classes” all day away from mainstream “Normal” children, which results in isolation, lack of social skills developing, the “normal” kids aren’t exposed to differences which result in teasing and bullying, we are “labeled” and Limited. We get that diagnosis and suddenly people are like “oh how will she be a functional adult citizen when she older?” “She can’t work” “probably doesn’t have a good mind.”


2.) Media- TV, Movies, Magazines, etc.: how many portray disabilities? And the ones that do, are they portrayed by people with the actual disabilities, usually not, usually they hire someone without the disability and put them in makeup..as great as the movie Wonder was, it was portrayed by an actor without a disability and put into makeup. How many magazines or books feature disabilities? YES There is more than there was back in the olden days, but it’s still a minority compared to others.


3.) Accessibility: Yes, they have elevators, but what’s one thing always said when a fire breaks out.. Don’t use the elevators.. so are the disabled suppose to just sit up in a burning building and wait for help? We need backups- A ramp that goes up or one of those chairs that go along the stairs or something! Look at the Cracks in sidewalks.. some are almost as bad as potholes in the road. Some people in wheelchairs without seatbelts can get “dumped out” due to cracks. Or older buildings that don’t have “accessibility.” It is 2019, you can apply for grants to get the accessibility.


4.) Bullying/encouraging suicide- those with disabilities get on social media and express themselves on Youtube or something like that and get “trolls” and “cyber Bullies” who encourage them to “kill themselves” or “how their families would be better off, ” “how we should have been aborted,” etc. Stuff a lot of us have heard our entire lives. People getting rude to us because we are: Walking slow, not really paying attention and “in their way,” drive slower than other people, struggle to drive the hover-carts in the stores, etc. Whispers behind our backs, teasing to our face, staring at us like we are some sort of “Side-Street Freak Show.”

oh and lets not forget how alot of people can abuse the system, but a disabled person stays honest and they can lose benefits by getting married (which should be a basic human right for anyone), trying to work and be functional to the best of their abilities (can’t have more than $2000 in the bank or you get knocked off and cant have a lot of assets,) just living with my parents, I only got $86 in food stamps. I get more now living in an apartment and having very little money for any fun due to bills and when i am in college- tuition. #AsifLifewasntHardEnoughwithjustDisabilities
So yeah, keep telling yourselves, we don’t live in an ableist society. 🙄🙄🙄🙄🙄🙄🙄🙄🙄🖕🖕🖕🖕🖕🖕🖕🖕🖕🖕
#DisabledsNeedaVoice #WeareHumanToo #FuckSocietysStandards