Finally got answers; bad news, its another pothole plot twist: Broken rods.

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.

Link for the gofundme: https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring?fbclid=IwAR1eoT8HJHiIHSc6bX9Ej31bO0mhl5TIETaFEvpw8iXrHhme23ZlKcbbdWk

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another pothole Plotwist: more medical issues

know what I hate? people who don't mean what they say...

I have been fighting a wound on my back on my incision scar from my back surgery since May 2017; it closes 3/4 of the way, then it reopens due to a hyper granulate of scar-tissue or something. The Dr in wound care has tried everything from "packing" it, cauterizing it, going in and taking out what he thought was the problem. He is at a loss, so he asked the orthopedic if he'd see me and he said he would. Well now, when they try to schedule me an appointment, the orthopedist's office says they cant because I have Medicaid when the doctor already said he'd see me! >:( 

So now they suggested, getting my medical records and going into the E.R. at the LSU hospital in Shreveport. The E.R. because the office is backed up for appointments. 

This thing has been a giant pain in the butt, oozing all the time, wearing gauze and paper tape or bandaids, or spray/washing my shirts due to the oozing, only using towels once after bathing which increases washings; plus maybe that's why I am so much achier now. I don't know, but man this crap better be taken care of by my wedding next year. 

In other news, I am being sent to an oncologist (just the word freaks me out because usually they are associated with cancer.) My white count has been high since May 2018 right after the procedure to clean up my wound, and my GP couldn't figure out why. could it be the wound being infected or could I have cancer? I do bloodwork on the 17th. Keep me in prayers, thanks. 

All these medical issues are one reason I am sitting out this semester of college.

planning a wedding that is a year and a half away...

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.

Plot Twist!!! I am Engaged!!!

Ever since I can remember, probably once it really (I mean really) "clicked" in my brain that I was different from everyone else, I always thought I'd never date, less become engaged and eventually marry someone.



I always saw these girls in magazines or my peers who were into makeup and fashion and here I was just struggling to look presentable but still comfy. I always saw the girls with bigger boobs, or nicer ass etc got the guys. That was their "dream girl" or so I thought and I thought if that was their dream, then I must be their "nightmare" cause I didn't look like that.



As I got older, I kind of just gave up on guys, I had gotten hurt too many times and wasn't gonna put myself out there to be hurt again;  figured I'd be "flying solo" the rest of my life...then after my surgery, I joined an online dating site at my mom's suggestion, and met a boy with Spina bifida. He brought out something in me that relit the fire of wanting love, wanting to be loved and accepted, and I figured if anyone understood my struggles, it'd be someone with a disability also. Sadly, however, that story ended after 3 years, the fire dimmed and was barely sparks anymore and I was constantly nagging him. I didn't want to be a "mom" I Wanted to be a girlfriend.



I put myself back out on the dating sites and got a few "hits" saying "hey beautiful" and my comeback was always 'you must be blind," "are you being sarcastic?," or "you need your eyes or maybe your brain checked out." because I didn't see myself as "beautiful." Then enters this older guy by 6 years or so, the same line of "hey beautiful," my same remarks of doubt, however, he persists and persists and persists; talking every day, wanted to meet publicly. so we did. we began dating October 24, 2017.



we had fun: productions at Opelousas Little Theatre, eating out, playing bowling on Wii or monopoly on the Xbox, taking his niece places, doing a gingerbread house, putting up Christmas village, oh the list could go on and on!

Sure he pesters me and likes to cuddle more than my ex, and I am not used to it and I push him away, but I do love him and like spending time with him, but I wish he'd understand I need my alone time too.

This Christmas he proposed to me! So now we are fiances' It is so weird but wonderful at the same time!!

hey everyone!

Sorry I been away so long. update: I had a boil May 2017 and I am still fighting with that wound a year and several months later; after a surgery to "clean the wound out" and developing pneumonia after that surgery. UGH! Nothing is ever simple! I am back to living on my own..well not my parents house anyway. I got an apartment at Bayou Shadows again; this time with my boyfriend. I am going back to ULL and trying my best, but some days are just so hard where I don't want to do my work and just lay around and chill out; even when I have 2 days off besides weekends. I don't know if its just lazy, can't focus, or depression or something. I don't mind doing housework or playing with my dog, but when it comes to the schoolwork, I gotta force myself --even for the two "fun classes" I scheduled. So weird, but hey I am trying my best with the hand I am given.

God Bless!

Living with Ehlers Danlose...The Mystery of my life.

I have always had Ehlers Danlose Syndrome, EDS, but it has always been a mystery to me. One reason of this, being that my parents decided to focus on the "bigger problem," which was my severe Scoliosis/Kyphosis. 

I am not mad about this, and how were they to know that my life would spiral out of control. I thought this back surgery would solve everything. And it did… Temporarily; probably because I tried to resume my usual activities and didn't take into account there was 2 tons of metal in my back. 

By summer 2013, I was completely off my Spasm and Pain meds, only taking heart medication and occasional low blood pressure medication, tums for stomach problems, and potassium supplement. I was back to driving and doing my own thing; everything was going great...until late August 2013. 

It all started with a usual younger cousin birthday party. It was late summer in Louisiana, and humidity was terrible, and the party was outside and it was a "fun jump waterslide," AKA "inflatable water slide." The list I got from my doctor of my can and can’t do, said nothing of "fun jumps" or "inflatables," but it had said "never" to trampolines. I should've thought of fun jumps/inflatables as "trampolines" but no, instead I rushed home to get my swimsuit and hopped on. Halfway up, about 2 steps from the top, I slip off the steps of the ladder and cling to the rope/clutch thing they have to help if you slip. I can't get my footing. Meanwhile, I got little kids behind me asking "are you okay? Can you get up?" and I am just thinking "DONT ASK STUPID QUESTIONS, JUST GET HELP!" Thankfully the dad of these cousins, was a doctor, and knew how to help me up (where to grab and etc.), he helps me the rest of the way up, and I got to slide down, but the damage was done and I was sore. 

In October, when I went for follow up visit, there was a small hair-line fracture in one of the rods; don't know how I got it: he said it could've happened from just rubbing it too roughly as it was a hard spot to fuse during surgery and he wasn't really concerned about it. (Update: It still remains the same, the fracture has not grown or progressed and no need for further surgeries.)

Fast Forward to January 2014, I had just moved out into my own apartment with my beagle, Mya. I was hosting my first "sleepover" with Mom, my cousin Alyssa, and my friend Amanda. While Mom and Alyssa were there, I went walk Mya. I was distracted, talking with Alyssa, and Mya had a retractable leash so I thought she was okay. I was wrong; something caught her attention and she tugged the leash hard and took off, making me fall and drop the leash. I couldn't move, I couldn't get up, and Alyssa asks "You okay, Jamie?”  ..."Alyssa, don't ask questions. Either go get mom or catch Mya." I ended up in the E.R., no broken rods, but I had blunt force trauma to my chest, and a few broken ribs. 

Time passed and I recovered, lost my school funding and had to move back to my parents. Fast Forward to Labor Day 2015, I was at my boyfriend's house, laying around, watching movies with him; I sit up to turn over or get up or something, I move the wrong way and pull a muscle and probably "tweak" that same problematic rib again.

Ever since then, my energy is crap, I lay around all day, not by choice, and pain is chronic most days. A lot of the days, I need mom to drive, or if I go to the store, I need the hover rounds. I honestly don't think it’s the rods from my Scoliosis surgery, because like I said summer 2013, I was doing great. With EDS, patients don't recover quickly. So maybe that’s my problem or my body is degenerating. I don't know. It’s all a mystery. I hate being a puzzle. 

All this pain and stuff, it makes me worry a lot about my future...if I can get pregnant or have biological kids, will it mess up my body and worsen my chronic pain, how will I function at a job when it takes all my energy to just get through a day at home, The future is scary. Uncertainty is scary. Life is Scary, but all I can do is just "keep on". With God my lord and savior at the helm, I know my life will be okay. 

How are you suppose to live?

When you feel like everything you do is wrong. There are things I know I do that are wrong, but even when I try to fix them or right the wrong, be mature and take responsibilities, sometimes that blows up in my face as well.

Its like nothing I do is ever right.

How am I suppose to live if every thing I do is a "fuck up"? I might as well die. :( UGH.