Here's me:
Here's the loop. The loop represents my diagnosis status and all that medical information that has bearing on my treatment, prognosis, and life in general.
When it comes to my diagnosis, test results, and what I might be looking at for the rest of my life, I feel as though I am not in the loop:
I am now on a quest to remedy that fact. I want to be in the loop when it comes to my health. I want to be informed so that I can make decisions. I want to know what the test results are and what the doctors are thinking when it comes to why my body doesn't work. And if I'm not getting clear answers when I meet with them face to face, by golly, I'll have to get them another way.
I'm requesting copies of my medical files from my GP and my rheumy. For anyone else out there who is a little frustrated with their current medical status or wants to be better in the loop about their health, you have a right to your medical records. US law (pretty sure UK and Canadian law are similar) states that your medical information is your property. You have a right to examine them or ask for a copy. So that's what I'm doing. I'm currently writing letters to my docs. I'm looking forward to actually understanding what they currently have me diagnosed as having and then making decisions based on what we've done and what question marks I still have as to where to go and what to do next. Because I'm not satisfied with where I'm at and I want answers. And if requesting copies of my records is what it takes to get me in the loop, I'm all for it.
