ankylosis

Happy throwback Thursday, to happier times, when I was still able-bodied! I was in my early twenties & this was at the park. I had given birth to two girls before getting sick. Well, before being diagnosed I should say! I’ve been sick most of my young life. It just wasn’t until later on that it became more readily apparent. I used to love the outdoors & grew up near a lake. I was always very adventurous & outdoorsy growing up. It was my refuge. Now I’ve been entirely cut off & rarely if ever venture out. I stay isolated in my dark bedroom with little to no stimulation. My only access to the outside world is an iPhone. Ever since getting it a couple years ago my hands became deformed from arthritis. I have swan neck deformaties in my right hand & three palm in fist closed fingers in the left. My elbows stay permanently bent & I have ankylosis of the shoulders. I have visited many orthopedic surgeons & upper extremities specialists to no avail. However, a recent hand specialist in Atlanta may be promising. She said the left hand resembles a stroke victims. We hope to operate soon. I have lost so much range of motion & mobility from chronic widespread inflammation & disabling arthritis. I’ve been trying to seek an official diagnosis for Sarcoidosis on top of my other rare disease but, my new Pulmonologist at Emory said my lung nodules have improved after a recent PET scan & won’t require a new biopsy. It’s all very hopeful because I had to make sure my lungs were good before undergoing anymore procedures & they are. Yay! #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Spoonie #CommonVariableImmuneDeficiency #Arthritis #ankylosis #Anxiety #Depression #Agoraphobia #BipolarDisorder #MentalHealth