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
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.
(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.
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.
I legit want to break down, crying in the fetal position, due to how much pain I am in tonight. My curve is sensitive to the touch and making “creaking” noises. My pain meds don’t seem to even dull the pain anymore.
The CT scan needs to hurry and done (found out today that Medicaid approved, so now just to wait to be put on schedule UGH!) So I can get this surgery and get back to a semi-normal life like I had before all this pain!
#ScoliosisProbs #KyphosisProbs #Humpback #HunchbackGirl #TwistedSister #TwistedPretzel #PretzelGirl #CurvyGirl #Curvyinwrongplaces #EhlersDanlosSyndrome #EDS #ZebraGirl #SpinalFusion #BrokenRods #NeedRevisionSurgery
So I have been waiting for orders for a CT scan to be approved for a little over a week, almost 2 weeks through Medicaid. I decided to call to find out what the hold up is.
Took 3 calls back and forth from Medicaid to my GP’s office, but I think I finally got it all straightened out.
1st Medicaid person: we need them to do prior authorization. (Total confusion, I hang up and then clear my head and call again to better explain my situation.)
2nd Medicaid person: shows only 1 CT scan and it shows it been approved. They need to call us with the prior authorization # that was sent back to them.
(Okay, simple enough. I call my Gp’s office): There was another one that needs to be done and the website shows that one is still pending.
Okay..so I call Medicaid a 3rd time: The 2nd order isn’t showing up on their side so I sit on hold while they call the GP’s office and try to get this all straightened out.
I Need these CT orders done so I can get my CT sent to Dr. Kelly and figure out a surgery plan to fix my broken rods and get the f off these pain meds.
Waiting and living on pain meds isn’t a life!!!! Why does Medicaid and health-related issues (billing, etc.) have to be such a freaking headache????
my wound care doctor suggested going to ER at LSU med center in Shreveport to just have them look at my back and consult about the broken rods. Mostly a wasted trip..I knew the rods were broken and I was pretty sure they weren’t gonnado any surgery on me; plus the doctor’s name was “dr. Sin” LOL..Never trust a doctor with the name Sin! JK. I am sure he is a great doctor, but I already have my hopes set on Dr. Kelly in St Louis since he trained under Dr. Lenke (who originally did my surgery)
Due to my wound not closing up, we did x-rays and I sent them off to the surgeon who did my back surgery and he confirmed: broken rods and my kyphoscoliosis deformity was worsening. It would explain my increased pain each year, as well as why this wound isn’t closing or cooperating correctly.
Downside? My surgeon can’t accept Medicaid and it is the only insurance I have. To self-pay would range from 250,000 + dollars, not including transportation costs or lodging or food.
I am blessed, however, with an amazing fiance’ who immediately jumped on the computer to start up a gofundme. He says we will do whatever it takes to get this seen about. We also looked into getting a referral to LSU medical hospital in Shreveport. Also blessed by having the former care-coordinator for my surgeon as a contact, and she reached out to the surgeon who took over my surgeon’s position in St Louis. (The one who did mine in 2012, moved his practice to New York). There is something called “hardship assistance” and I can try getting that. We will still have the gofundme just in case.
So until this is solved, I guess wedding plans are on hold??? I need to get out and start prepping my body for revision surgery.
I am already turning into a bridezilla. I am stressing over trying to find a venue that doesn’t have a capacity limit of 300 or less people for a decent price, with a kitchen to use, that allows us to self cater and self- booze. 😦 it is really hard.
Then trying to figure out who to eliminate off the guest list when I feel so close to everyone who ever came in my life. My love runs deep, and it feels like cuts of betrayl towards them when i cant invite them to my wedding day. 😦
Then to top it off, I asked my fiance’ 3 days ago if he had an idea for a first dance song..”no”. so I set out on a quest; a quest to find the perfect first dance song. I spent 3 days and resulted in 2.5 pages of potential songs (Sure, a good portion of them were Disney songs; I am a kid at heart, quit judging!).
Today, I started to play them and 10 seconds into them “no, no,no.” to several of them, and then says he wants “that Bryan Adams Song ‘Everything I do,'” Seriously?! I asked him 3 days ago, I spent 3 days searching! and I loved alot of these songs.
I hate feeling stressed and about to blow up, so I am walking away for now. I will retackle it later after some goodnight sleep.