Hope you are doing well.
I can definitely understand what you are going through. My disease started at 16,
I'm 26 now. I have ankylosing spondylitis (AS) and non-radiographic axial spondyloarthritis (nr-axSpA). Im going through kidney failure, Bone Marrow Edema in my pelvis, and a central disc herniation in my lower vertebrae.
With severe fussion in my sacroiliac joints and so on.
I did research on my Bone Marrow Edema, and it's inflammation in my Bone Marrow. Reducing bone density while degrading my bone.
I feel helpless sometimes thinking about it.
I stay positive, being thankful for what I can do.
Despite everything, im addicted to workout. I only do my upper body because my lower body doesn't work so well lol.
Don't lose hope, im grateful your doctor has a plan. It's said that once on the right treatment, the Edema will go away in time.
I'm hopeful in your recovery.
I know things will turn out to be okay.