Hi Everyone. I've had two meltdowns in the past three weeks. In October x-rays showed I don't have cartilage in my right knee (runner 20 years plus prednisone daily) and bursitis in right hip. Orthopedist injected both with what looked to be 20-30 cc of corticosteroid that caused me to become crazy jittery and once again landed in bed and did nothing for my knee pain. Weeks later took my first injection of Prolia for osteoporosis and could only move enough to potty and back to bed. Weak, painful, sucked.
Forward to December sleeping 15 hours a day. Developed nodules on palms and red spots on legs, arms. Saw dermatology yesterday who knows autoimmune and she said she thinks I have a cyclical virus related to my Benlysta infusions. All of this just nudged the meltdown.
I've been taking Nucyenta, a narcotic, for my knee two years and CVS/CAREMARK will no longer approve it so I've made countless phone calls to Blue Cross Federal, CVS/CAREMARK, my pain specialist doc, and visits to CVS. Hubby, who works for the same mega Federal agency that I worked for, found that changes have been made so that now I can't take Klonopin and Nucynta together like I've been doing for two years. So all these calls etc led to another crying jag triggered by "I just can't win syndrome." Do I give up the pain med for my knee or stop Klonopin that barely holds my anxiety at a sub-melt level (I already take two expensive heavy duty psychiatric meds.)
Lynnwood said something during my last meltdown, "It's a terrible thing when a disease takes over your whole life." I'm not expecting any answers. I'm not even expecting condolences. But I would like to know if any of you (who have read this far) have run into the same roadblocks I've run into with our continually changing, state of the art, don't give a darn about patients, pharmaceutical companies, and medical professionals. Love, Butter-flake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry