I requested my medical records from my Rheum for an appointment I have at the VA next week, and to hand deliver them to the SS office for my disability claim.
I picked them up today and started reading. It was fascinating and terrifying to see my decline over the last 6 years. The last 4-6 months shows an especially exaggerated decline. It was also interesting to see things that my doctors hadn't bothered to tell me. I found I have non reactive arthritis (not uncommon with PsA). I found that the Rheumatologist at least at one point felt I may have Fibromygalia (was never informed of this and it was never followed up upon or officially diagnosed). I found I have had low Uric acid levels for over a year (can be an indicator of MS). I found I have proof of arthritis in my SI joint (never informed of this) and FINALLY diagnosed with arthritis of the right hip after YEARS of trying to get someone to listen to me about the constant pain in that joint.
I often feel like my Rheum is abrupt. I really like that part of him in some ways because he doesn't poo poo around, but I also sometimes feel like he's not really listening to what I'm telling him about what is swelling, how it's affecting my life, how I am constantly in pain. Reading my records I came to realize that not only does he listen to EVERYTHING I say and record it, but there are instant message conversations recorded in the records of him inquiring about following up with how I am, if I need to come in, why something hasn't happened, and frustration with his inability to help my quality of life.
Even with living this every day it is really shocking to read through my records and see just how quickly I have declined. I hate that my Rheum is frustrated with my condition (lord knows I am too), but it is somewhat comforting that he is frustrated. It shows he cares about my quality of life and I am not just a number. I knew these things to some degree already or I would have left him years ago, but reading it really reinforced that.