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 Fibromyalgia (was never informed of this and it was never followed up upon or officially diagnosed). I found I have had low Uric acid levels (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 a tone of frustration that I am not having improvement.
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
I had a similar experience, although my rheum pretty much tells me EVERYTHING...she's a girl, though, so different communication techniques LOL! It still struck me to read the records and see her documentation of every appointment for 15 years and the decline and her frustration, etc. And, there was one or two things she didn't mention, but likely because it did not require a change in treatment. Recently, she jokingly told me she was so frustrated with me, she was gonna pass me off...she did not mean it, of course...she has a similar sense of humor as me, so it works for me. I told her she cannot retire until I'm cured...at which we both laughed hysterically! I liked your doc when I saw him as well...he's a good one and he really is paying attention when you think he's not! Based on some of the comments in the FB groups, we are very, very lucky!
ReplyDeleteIt's really nice to find out just how much someone cares, whether they be a friend or a doctor. :)
ReplyDeleteJeanie we are VERY lucky! I wish I could convince him to move to AZ with me lol.
ReplyDeleteElizabeth, it is a great thing to realize that people care. So often when we have chronic diseases our friends fade away. No one wants to hang out with the "sick girl". It reminds them of their own mortality, especially if they knew you before you were obviously sick.