one of those days…Update on A/c Leak.

Maintenance came out to fix the A/c issue, but the water soaked some of the bedroom carpets and even into the closet on David’s side. The maintenance people had us move stuff out of David’s side of the closet, and are gonna blow-dry the carpet and spray some type of chemical to prevent molding. 

I don’t know what God is trying to tell us/teach us, but, I could’ve really done without the moving stuff around workout today when I was already hurting, but oh well, That is life. It isn’t always as we expect/plan. 

I hope and pray that they are able to fix it to the point of no molding, and we are able to get our deposit back when we move out of the apartments. 

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another sleepless night; chronic pain and tears.

A bad storm passed through Louisiana this week so it has been quite a bit of sleepless nights for me lately and then add in the dreaded once a month bullshit us females have to deal with, adding in stress, anxiety, hormones, emotional roller coaster, all that (sarcastic tone) “fun.” Tonight, I tossed and turned for 2 hours while my fiance’ just lays next to me snoring; sure, I could wake him up and make him suffer with me, but that is selfish plus he works to provide for us, so I guess he needs the sleep more than I do, but it sure would be nice to be able to talk these things out instead of blogging them.

I have a mattress that can elevate the head, it helps with migraines and sometimes my upper back (then I gotta deal with my lower back and hips hurting), but tonight my upper back is hurting and I am not even gonna use the head-elevation because lately it has been making my fiance’ back hurt in the morning; which sent me down the dreaded “rabbit hole” of the uncertainty of a future together: What if I become bed-ridden, what if he has to help me with everything more than he does now? That isn’t what he signed on for! It isn’t fair to him. I know he made a commitment to me and he constantly reminds me of it anytime I start crying and freaking out about how much pain I am in and the fears that sends into me about how uncertain my life and future are; I just don’t want him to have regrets or resentments. I love him, I really do, but when these fears kick in, I go into flight mode and tend to push him away, thinking I am saving him from being stuck in a sucky future with me and my damn disability. How can I expect him to accept it and what it does to me, if I cant even accept it completely myself?

If there was a pill created to make me “normal,” like everyone else in society, I would take it! Even though I also feel like having my disability has made me a well-rounded, wise, empathetic, compassionate, supportive, loyal, passionate person. Does it make me a bad person? Why is it I can be a support system and cheerleader for others with disabilities but yet I cant even accept myself completely? Does it make me a hypocrite? Maybe its just the pain talking; well the pain and the damn devil. I need to really work on myself and loving myself for me; whole-y and completely. Maybe after my surgery to fix my rods, maybe my pain will be better, and I can start being happy again. One can only hope.

The last week-Stomach problems-May 2019

The last week or so, I been having stomach problems. First, my fiance’ niece was over here and any change in routine and my stomach routine goes out of wack (constipation). I was hurting more in my back and hips, lots of belching, bloating, nausea, decreased appetite, and gas; so I thought maybe it was due to constipation, however, once I did get back on my bathroom routine, I still had problems continue.

when I am hungry, I get nauseated, and once I eat, it chills out for a little while, unless I overeat, and then nausea comes back. I still have decreased appetite, craving more sweets, still belching a lot, still got a lot of bloating and gas, and at least my pain in my back and hips has returned to its normal-pain levels.

Yesterday and Today, it was BBQ lunch I had yesterday and then I also had red velvet cake today, so my stomach is really hurting and gurgling πŸ˜₯

August cannot come fast enough. I think that is a lot of my issues- the broken rods, my Kyphosis getting worse again, putting pressure on my tummy. 😦

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

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 Bullied” 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 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. πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•πŸ–•
#DisabledsNeedaVoice #WeareHumanToo #FuckSocietysStandards

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