ADA, Chronic illness, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, disabilities, disabled, Disableds, doctor, Doctors, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Health, HealthCare, Joint Pain, JointPain, Joints, Joints Pain, Medicaid, medical, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, sickness, Special Needs, Spinal Deformity, SpinalDeformity, Spoonie, Spoonies, Syndromes, Zebra, Zebras

EDS Journey: trying to find a genetics dr- Epic fail

Life of someone with EDS/ Ehlers Danlos Syndrome: I have had it all my life, but don’t know the type. I was trying to find a geneticist that accepts Medicaid because I am having more and more joint pain(if it’s not my scoliosis, its joints), and the only way to truly find alternatives and answers besides Pain medications would be knowing the type I have. so I called Medicaid, but they say all that’s in their system is Pediatrics.

God, please send me a sign and some type of help. 🤷‍♀️🙏🙏🙏🙏🙏 #RareDisabilities #EDS #EhlersDanlos #Louisiana #Medicaid #MedicalSystem #Disabled #Disability

ADA, Adult, adulthood, Adulting, Infection, Infections, medical, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine

Disability Journey: update- No More infection!!!

I am almost at a year post-op. During the surgery, it was discovered that the broken rods that were being replaced had gotten infected, causing an infection throughout my body and I was put on IV antibiotics for 6 weeks post-op, then switched to oral antibiotics- ever since then, I had been on the oral antibiotics. 
I was due to go to bloodwork in March, but due to COVID, things got pushed back and hard to get in to go do the bloodwork until almost 2 weeks ago.  Finally, almost 2 weeks ago, I had bloodwork done to send off to the Infection dr in St Louis to see if I still had the infection in my body. I hadn’t heard anything, so I decided to give a call. They just called back and said my labs were all clear. No More infection!!! woot-Woot! No more antibiotics! 😀 yahooooo! Break out the champagne. 😛 haha.

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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