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


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????


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.


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)


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


Living with EDS..the mystery of my life. (April 2017)

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.