Category: Infections

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Disability Update: Good News/Bad news, Infection Update

jamiesjourney0591

 I got a email from the Mychart app from my Infections dr; Dr. Mejia. He got my bloodwork results in from Quest diagnostics in Lafayette, LA. Good news, I am negative for infection (meaning, no more infection in my body) according to the bloodwork. 

Bad news, he still insists on the plan of antibiotics being a life-long thing; due to the “complexity of the infection,” whatever the heck that means. 

To say, I am disappointed and upset is an understatement. This makes 2 years that my labs show I am infection free. I had hopes that I could eventually get off the antibiotics. I am not even 30 years old yet, and the idea of life-long antibiotics; God willing I live to a ripe old age, that would be 60+ years of antibiotics! 

yes, it times like these it is hard to see the light and positivity of my life, but I cannot loose my faith and Hope in God my lord and savior. He is good and all powerful, he is all knowing and can perform wonderous miracles. He is the only one who knows how my story will go. Be gone, Satan, quit tormenting me with emotional meltdowns and sorrow. I will try to look to God and find peace in his love and warm embrace. 

#Medical, ADA, Adult, adulthood, Adulting, Broken Rods, BrokenRods, Chronic illness, Chronicillness, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, doctor, Doctors, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Friends, Friendships, Handicaps, Health, HealthCare, Infection, Infections, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Medicaid, medical, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, support, Syndromes, travel, UnBreakable, Uncategorized, Zebra, Zebras

Disability update- Scoliosis Update: St Louis check up appointment

jamiesjourney0591

 On September 22, 2020, I had my appointment with Dr. M Kelly at CAM Center in St Louis, Missouri. He didn’t seem too worried about the broken rod at this time. the rod is broke but it’s still got some support from other rods and such, we not doing anything at this time (if rod gets worse or something, then we’ll see our options. Not really wanting to go back in at this time because the wound I had previously s finally behaved and “quiet.” So he’s like “let the sleeping dog lie,” to which I translated “don’t poke the bear” and he agreed.The “rod pain.” Is not rod bc the broken rod is on other side of my back, but it’s probably “muscles” or nerve pain instead. Which thinking back after my surgery in 2012 I did have similar pain but this round feels worse than last time. Idk. Maybe my fall made it worse..idk. 🤷‍♀️🤷‍♀️🤷‍♀️ anyway that’s the update.

other than that it was a great visit. I spent over a week (September 20- September 29) at a friend’s house; her family tried to convince us to move out there. LOL.

In other news, even though the infection has cleared up in my back, they still want me on infection meds. Also in other news, the rib pain that used to plague me before I had that wound issue start (after 2012 until the wound started,) is back. UGH. wish that would’ve stayed away.

Still no word from the geneticist about an appointment for my EDS- UGH!

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

Disability Journey: update- No More infection!!!

jamiesjourney0591

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.