I’m assembling all my medical records in one place in preparation for the big consultation next month. By medical records, I mean not just lab results and imaging reports, but radiology films, doctor’s notes, procedure notes, therapy abstracts, medication history, the whole nine yards. And I’m wondering, How do you keep track of all these things?
I’ve been sick since 2004, so it’s a lot of information to keep track of. It’s scattered across medical facilities in three different states, across a myriad of clinic networks & private practices, and in paper or electronic form.
I have a medical resume of sorts that Elliot encouraged me to pull together; it’s definitely be extremely helpful, but at this point, it’s really just an abstract or a table of contents. I’ve been thinking about getting 250 sheet protectors and a binder and just putting everything in there, maybe even with binder tabs, just to have a handbook with me. Or maybe a computer? [Lugging stuff like a computer around a clinic doesn’t sound fun (but neither does lugging a binder!)] The binder definitely has the upside of demonstrating that you’ve actually seen a doctor before, but I sincerely hope I’m past the point of convincing people of that. Plus it’s a little easier to lay stuff out. (Speaking as the person who handwrote her exams for her 8 hour comprehensive exams.) It’s nice to be able to understand what I have in my hand if I’m in charge and have to go around bossing everyone else around. But I have no objection to being the holder of the magic key that everyone else understands and is in their native language (even if I don’t speak it.)
Does anyone have any thoughts or suggestions? I’ve already contacted the coordinating physician at the clinic, and he just told me that the more information at his disposal the better. But my historian brain and my chronically ill experience tells me that how information is sorted is half the battle.
And I have serious objections to spending tons of time uploading data into a system that won’t give out more than I put in. At least give me some summaries or nice bar graphs please??
I have a giant file folder and an electronic file folder with all my lab & imaging results (and the more recent electronic images!) But the only record I have of medications I’ve been on is receipts from pharmacies. Does anyone have any suggestions for how to go about retrieving medication histories from pharmacies (or insurance companies) or how to organize that information in a way that is potentially useful??
Any and all suggestions would be helpful (and would keep me from losing my already lost mind.) Programs, apps, organization methods (electronic or paper). If you want to set my medical history to music or paint it, I also would have no objection. Comment here or email me at abigail (dot) cashelle (at) gmail (dot) com.
Thank you so, so, so much,