Following my first post about medical records, I have made some progress. I’ve also discovered how much work I have to do. For example, I have images stored at no fewer than 8 facilities (and that’s only the ones that I remember!)
1) my records my way: I decided that since these are my medical records and they are going to dictate how I am treated, I get to make all the big decisions. I got a green half-inch binder (because I love half-inch binders and I’ve never seen a green one before.) I also got divider tabs that you can write directly on. I had them in elementary school and I LOVED them, but my dad never let me buy them again. He said the ones that you can print out labels were better. And I put everything in sheet protectors. Because I love sheet protectors.
2) paying for records? I’ve also successfully gotten around paying for records but putting down “for continuing care at the Clinic of St. Jude*” and no one has questioned that. Plus I carry around my intake letters from the Clinic of St. Jude that say that they want you to bring your own records (as opposed to having your records transferred.) {St. Jude is the patron saint of hopeless causes, and I’m giving the clinic I’m visiting the code name of the “Clinic of St. Jude”.)
3) sorting: I’ve decided to sort the records by anatomy because I’m fairly certain that no sane doctor is going to confuse the foot with the heart. (And he does, we have much bigger problems.)
4) prescription records: for some reason, I’ve never had a consistent way of keeping track of which medications that I’ve tried and why I didn’t like them. This has resulted in me retaking medications only to remember why I stopped talking them before! Somehow keeping track of it is stressful, so I’ve just been lazy and kept every single receipt and medication brochure from every prescription that I’ve ever filled since 2005. (It’s a huge mountain of paper, and no sane person wants to tackle that.) Well, I asked and Ken’s colleague was able to pull up every prescription I ever filled at his pharmacy since 2009 in about 5 minutes. And it’s an easy to read table of information that has most of the pertinent information on it. I started looking up how to get records from other pharmacies (namely the pharmacies I went to in graduate school), and it turns out that it’s not that hard. Just two more stops to make.
5) in person: Everything has to be done in person. It’s annoying, but it’s also kind of better. That way, they check your identification, and only certain people can pull up your entire medical record. Plus, they do it while you wait, so you don’t have to worry that your chart is just going to be out for every random passerby to see.
6) electronic records: the beavers and armadillos actually use electronic records; (I was there when they switched over!!) and so I can actually walk away with a CD that has everything on it. No more requesting records from every single department I ever went to. (which would be ridiculous.)
All this is to say that I’ll go to the Clinic of St. Jude with a green binder full of records in sheet protectors plus a stack of CDs with images and electronic records on them. It’ll still be cumbersome, but that’s the reality of having a mysterious chronic illness for almost a decade. And it definitely beats trying to request them while I’m at the Clinic. Because that could take forever, and there’s no way that I’m voluntarily repeating some of those tests. Those were once in a lifetime experiences, thank you very much.
I have a list of places to stop by when I visit Grace & Timothy this weekend. There’s six locations plus I have an appointment with Dr. Mark to talk about visiting the Clinic of St. Jude. I still have at least one hospital, possibly two, to visit in my hometown to pick up records. But I’ve already pulled together images from four facilities plus pharmacy records. I just need to remember to call Dr. Bill’s office and have them send me the recent blood test results!!
It’s still a bunch of work, but I’m seeing the light at the end of the tunnel (I think).
Abigail Cashelle
hidden courage 