getting so sad and frustrated...everytime I get below 20 Mg Prednisone the aches in joints, swelling in hands, knees etc and fatigue comes back with a vengeance! My Rheum seems to just take it in stride (its not ruining her life!) & calmly starts me on another taper. Right now I honestly can't remember the last time I felt good - or even remotely normal! Been thru diagnosis hell! And even tho I finally have the diagnoses (plural!)..there seems no fix! 5 yrs & counting! Seems no closer to ...anywhere..than day 1. How can that be?!
I've been thru Plaquenil, Methotrexate (oral & injectable), Imuran, u name it...all without luck (some intolerable ..others shut down liver)! I really feel like a true guinea pig!
I'm usually not a complainer - my philosophy is "Just bc I'm in pain doesn't mean I have to be a pain!"..but I'm getting to the point that I'm wondering if I should try something else! Anyone try "healing therapy" like Reiki? Is this totally ridiculous?! I feel as if God is playing a horrible joke on me! Doesn't life get better than this?!
I'm fortunate my marriage hasn't imploded... my husb seems to finally " get" that I'm sick & its not a choice yet...he has never been to an appt w me (in 5 yrs!) & TG I had my father to take me for 2 yrs before we moved! Now I'm alone & drag myself there - yes..I feel like I've literally willed myself to get to the Rheum's office so many times! Sorry to go on..just feeling like I am that puzzle piece that doesn't quite fit into the space - perhaps it's cut wrong... whatever - point being feel like I don't belong in this world! Like I said..feel like God is playing a joke on me.. only I'm not laughing