Tag: BentNotBroken

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

jamiesjourney0591

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

jamiesjourney0591

 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

jamiesjourney0591

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

jamiesjourney0591

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

jamiesjourney0591

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

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Another Twisted Turn in “my Tale”-April 2019

jamiesjourney0591

So for many of my followers on Facebook, you probably are aware of a wound I have been fighting for over 1.5 years and if you don’t follow me on Facebook, then you aren’t aware of much since I just started really keeping up with my blog.

Anyway a little backstory, May 2017, I awoke one night with my back feeling swollen and hurting. I thought a rod had penetrated my skin and was broken (turns out there were broken rods,) I had an abscess (boil) on my back, which, a day or two later popped, and ever since I been fighting with an open sore wound that comes and goes.  For two months, I saw my GP, after a few rounds of antibiotics and it not healing, she referred me to Wound Care.

Wound Care has packed it with mesalt, cauterized it, packed it wound-gel, and even surgery to clean out/take out the “sinus tract.” The wound still comes back. Thankfully, we don’t think the rods have been infected (hopefully they aren’t wrong).

Anyway, It had behaved for over a month or two and I thought for sure it had decided to finally start to heal up. Then tonight, I noticed the area around it felt swollen around it (fluid build up) and was oozing slightly with a tinge of blood too), and that it itched, So I had my fiance’ look at it and sure enough, as usual, the hypergranulate tissue poked through the wound  and reopened it. AGAIN! So will call wound care in the morning and try to get in. *SIGH*

#NeverEndingStory #StoryofMyLife #MyBodyHatesMe

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Need Revision Surgery #MyGoFundMe #JamiesSurgery #BrokenRods- March 2019

jamiesjourney0591

My go-fund me account. Please share around if you cannot donate. Thanks ❤ https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring?fbclid=IwAR1eoT8HJHiIHSc6bX9Ej31bO0mhl5TIETaFEvpw8iXrHhme23ZlKcbbdWk

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Update- March 2019

jamiesjourney0591

I legit have the best mom, hands down. She gave up some of the time she could be doing stuff for Heather’s baby shower to calm my anxieties and took me to wound care. Good news, it’s not an infection, it’s just a little red and that is “common when healing,” and I just need to “try to keep it covered as much as possible to keep infections out.”
She then asked if I had anything to eat at my apartment, which I did, but I told her “yes, but I am so tired of leftovers.”

Her: “Well, what are you hungry for? Sonic? Burger King? McDonald’s? Taco Bell?”
Me: “Taco Bell”
Her (continues listing, which was a mistake): Chick Fil A
Me: Oh my goodness, yes! My weakness! Chick Fil A!
Her: oh my! What about your stomach?
me: I am hurting in my back which means I don’t give a flying flip about my stomach’s issues. when I hurt, I eat junk. its my comfort.

her: Okay.
(so yes, she got me Chick Fil A nugget meal).

Then we went to Target, she needed some things for Heather’s baby shower, but didn’t find anything of what she wanted.
Her: Need anything before we leave?

Me: Well, I’d like some snacks so I am not stuck eating creamy peanut butter out of the jar till my food stamps come in.

Her: Like what?
Me: Just some popcorn, a thing of chips, some real coke cola and not the no-name brand cheapo one me and David been getting at Fred’s, some fruit roll ups, and some type of cookies.

Her: okay. I’ll get that for you.

So I legit have the best Mom in the world! and a great Dad who works hard to pay for it 😛 ❤ #Blessed

anyway, I am home now, and going try to rest despite my back aching.

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

jamiesjourney0591

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.