latest update in my "Twisted Journey'

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.

I'll figure it out though.

my thoughts on "Touched By Grace" Movie *

 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 or down 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

update from last post:

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.

Gonna be 28 in 13 days! AHHHHH!

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!

who says we don't live in ableist society? *Warning: Rant!*

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 Bullied" who encourage them to "kill themselves" or "how their families would be better off, " "how we should have been aborted," etc. Stuff alot 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 alot 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. 🙄🙄🙄🙄🙄🙄🙄🙄🙄🖕🖕🖕🖕🖕🖕🖕🖕🖕🖕

#DisabledsNeedaVoice #WeareHumanToo #FuckSocietysStandards

Another Twisted Turn in my Tale.

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