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pain level 100 tonight 😭😭😭😭- March 2019

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

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Medicaid Headache (March 2019)

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????

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Ideas for my Youtube Channel-March 2019- Not implemented yet*

Thought of something for my YouTube channel. Name the channel “Jamie’s Journey” and have a weekly Q&A segment called “jabber-jawing with Jamie”. Anyone like this idea??? It would give in-depth looks at my life with my disabilities and trying to push through, to have a semi-“normal” life. Some days will be out and about, some will be looking at doctor visits, some will be routines, some will be about me doing cooking/baking, some will be me lip-syncing, etc. … Some will be me dancing around the apartment, some will be tag videos, some will feature guests like my fiance’, my parents, grandmother, family, etc…. However, I am sick and this will not begin until after I am feeling 100% better.

Update: I still have yet to do this, due to my Chronic pain and living on pain meds; probably won’t happen until after I have my surgery for my broken rods.

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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)

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Ughhh! Got Suspended from Twitter (Jan. 2019)

i was nervous to get my gofundme account rolling and so I was “spamming” it every time a celeb would tweet. I was just trying to get noticed. They are famous! they got money! share the wealth! UGH! 😦 so now i am in twitter jail until i can get them to unsuspend me.  UGH

Update: I couldn’t get them to unsuspend my other account so I made a new one.

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latest update in the winding road that is my life….(January 2019)

 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

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Answers Finally! But bad news, another pothole plot-twist: Broken Rods (January 2019)

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