Uncategorized

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. πŸ™‚ So just swimming and me doing spa-makeup and dress up, and board games with her, she already has fun πŸ™‚

#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. ❀

Uncategorized

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. πŸ€·β€β™€οΈ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.” πŸ™„
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. πŸ€·β€β™€οΈπŸ€·β€β™€οΈπŸ€·β€β™€οΈ

Uncategorized

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 πŸ€·β€β™€οΈπŸ€·β€β™€οΈπŸ™πŸ™ 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.

πŸ€·β€β™€οΈ
Uncategorized

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

Uncategorized

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

Uncategorized

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 $38 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. πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•
#DisabledsNeedaVoice #WeareHumanToo #FuckSocietysStandards

Uncategorized

Thinking of Running for President when I am older- March 2019

I originally thought Trump was lesser of two evils, but upon seeing how he’s building that immoral wall, and the latest stunt from “Devil Devos” defending Special Olympics, and Trump ends ACA.  I am convinced that no one will truly give a “crud” about special needs advocacy and their rights until someone who has experienced it, gets into office.

1. I will not hire “rich friends” based on association; I will hire people based on qualifications to get the job done.

2. I will make sure medicaid is accepted through out the country. This not taking medicaid from one state because itsfrom another state BS is gonna end!

3. SSI and Foodstamps for Disabled will be decent enough to live on
4. Assistive programs for those with special needs will be available throughout
5. Private schools will be able to recieve funds federally if they have special needs classes
6. Pedophilia will recieve life sentences. No more of this “they’re reformed, they got good behavior so time off.” BS. We will protect our children

7. Special Training to all police officers in regards to Mental Health, Autism, Special Needs, etc.

All I can think of Right now… #Jamie4President2026