Please help out! Go Fund Me Page

please share and pass around on all social media platforms. My surgery in August is coming up fast! Preop is July 16!  Thanks.

https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring

Much appreciated, Thank you!!! 

Fun last night; Sore today

The wedding for my cousin was so much fun. The ceremony was beautiful. The bride was gorgeous. The celebrant(priest) cracked some jokes and made the audience chuckle. The reception was great with awesome food, great music, a beautiful cake, lots of fun and dancing, a cute cardboard cutout to take photos in, a fun and creative “send off for the bride and groom,” and of course an open bar! All the makings of a great Louisiana Cajun wedding.

For me, even though it wasn’t my wedding, I still had a great night. 1.) I wasn’t hurting for once, 2.) My stomach cooperated which is very unusual for social events, 3.) I got to see my godson and his family, and 4.) I danced and sang almost the entire night! I danced with my younger cousins, older cousins, strangers (to me- they were probably family or friends of the bride or friends of the groom), Mom, and my wonderful fiance’ David danced with me a few times for slow dances and one fast song, “Brown eyed girl,” (which is usually me and mom’s song, but Mom was nowhere to be found when it came on, so I had a substitute. LOL)

However, today, I am paying for all that cutting up and fun, as I am sore to the max! I slept till noon, soaks in the tub didn’t help, had to give in and take my pain meds.
I can’t wait till after surgery when I can have fun and not be so sore the next day. I missed having fun like that!

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

Another Twisted Turn in “my Tale”-April 2019

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

Update- March 2019

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 πŸ˜› ❀ #Blessed

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

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

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.

Xrays and Shreveport LSU E.R. visit (Feb. 2019)

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)