[irritatedkitten]

hi everyone! my journey towards diagnosis and treatment is long, angsty, and boring. four years ago i was getting by, and then i developed what i was told was CRPS/RSD. doing PT gave me stress fractures and my treatment has basically been to just take a ton of meds and hope for the best. my PM doc is the best, but he's at his limit of what he can do.

after my massive pulmonary embolism in 2012, my blood work indicated that i had lupus anticoagulant and with it came a lupus diagnosis for a few years which, when the neurological symptoms (twitching, shaking, jerking, weird fits that aren't officially seizures but are seizure like, vision disturbance, complete urinary retention, etc etc etc, i know you all know the song) became so overwhelming, the rheumatologist said 'not lupus' and sent me on my way.

my neurologist is an epilepsy specialist who seems less concerned that i'd like, given that my life has stopped. anyway. i'm terrified. i'm so tired of being a mystery, i have no one in my life who gets what it is like to be sick or hurting all the time. my husband is a fantastic caretaker, now, but this isn't what he signed up for- so i have the guilt there.

anyway. i've been rocking a foley catheter for most of the year but it gives me the most awful ureathral and bladder spasms, controlled by a combo of oxybutynin and buscopan (unless i walk, sit, breathe or irritate the catheter at all). last friday my urologist confirmed the urodynamics showed my bladder is completely dead, no indication of muscle movement at all and said he'd get me scheduled for a supra pubic catheter sometime in january (the hope is i'll be able to sit and walk again) and then they called and gave me an appt for tuesday, this tuesday. i'm terrified. just of everything. my life is one big question mark, i can't handle being a person who just lies in bed. so hi. i'm rae, if you have advice or friendship on offer, i'm accepting and will reciprocate!