could my problems finally be solved???!

so update on my twisted medical life: I got into see Dr. Kelly at CAM in st Louis for a consult on my broken rod(s) . He trained under Dr. Lenke, so less chances of my back being screwed up. I have an appointment at CAM center at 8 a.m. on March 5, 2019. I will have to pay $150 deposit , and after they charge for xrays, that should make my balance the $200+ mark to get hardship assistance, since they don't take out of state medicaid. *Positive Vibes* 

latest update in the winding road that is my life....

 The latest update in the winding road that is my life.... I got a referral to LSU Medical in Shreveport and then also the former care coordinator for the orthopedic surgeon that did my surgery, is trying to get me into the guy that took my surgeon's position in St Louis, when my orthopedic surgeon moved his practice to NY. Due to neither NY or St Louis takes out of state Medicaid, or Medicaid at all, The only way I can see the Dr. That took my orthopedic's position in St Louis, is by applying for "hardship assistance." *Fingers crossed that works.

In other news, my fiance wants to move to St Louis, MO, because he thinks if I am on their Medicaid system, then the ST Louis hospital will have to accept it, plus he is under the impression I'll get better SSI check (newsflash Hun, the max is $771.00 which I currently already receive.)

I also realized it will be different this recovery time, due to my former physical therapist no longer practicing, I will have to do it through the hospital. UGH!

I also realized I will probably miss my Beignet more than I missed my Mya; If that's even possible. I love deeply and the thought of once again being away from my own bed, my own apartment, everything familiar and no Beignet to love and snuggle, hurts my heart. I also realized I won't be in the children's hospital wing this go-round, so the therapists will probably be tougher, and not as much fun recreational activities to keep my mind off the pain. Well, I guess this is my life punishing me for acting irresponsibly after my first time recovering after surgery. Karma sucks! LOL

Log in

to use Ginger

Limited mode

if we are

×

Log in

to use Ginger

Limited mode

If that's even possible

×

Log in

to use Ginger

Limited mode

recreational activity

×

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

Log in

to use Ginger

Limited mode

kyphoscoliosis

×

Log in

to use Ginger

Limited mode

kyphoscoliosis

×

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!