I've decided for the time being to blog about whatever is going on with me. I'm not quite sure I'm to the 'share the post on G+ or FB' part, but writing about it has helped me calm a bit. I mean, when I made my first appointment, I cried. Now I'm re-focused and ready to go, something writing has always been able to do for me.
Right now I'm putting together a document for my doctor, listing all the information I can remember. I learned when I moved from Arizona that not all records come with you. There's even a neurologist out there who refuses to let my records go despite many requests from myself and other physician offices. I wonder if it's because there are notes in there on him telling me the fuzzy feeling in my head came from static electricity in my hair and I needed a better conditioner .... ?
(No, I'm not joking, sadly. The worst part is not believing him, but looking it up in case I was wrong. He is a doctor, after all. Then I found out I was right. This guy who was supposed to be taking care of me wasn't taking it seriously enough - or he thought I was a hypochondriac. Lovely.)
I don't remember everything. I don't think I remember every test, and I certainly don't remember every medication. I honestly thought the doctoring world was more organized than it is. It's getting better as everything goes digital. I'm excited to see the medical world my kids grow up with where it hopefully results in higher efficiency and lacks the need to have tests repeated every time you're sent to a new doctor. Particularly since it's frowned upon for patients to really know their medical history, or see the tests, since we laymen won't always understand what's there. (Oh, taste the bitterness.) ;)
Anyway, so I'm putting this document together and I sent it to my husband to look over in case he notices something I missed. He still hasn't read it through, but he is getting excited about what we could do with it since I'm using Google Drive to draft it. We can share it with people we know in the medical field and see if they spot a test or a theory that hasn't been explored yet. We can even crowd source it and ask other doctors to send us their theories to then take to my doctor.
I'm almost there with him, though I always hesitate to do things like that. It isn't privacy so much as pushy. But, I guess, this would be voluntary. Still ... I'm not quite comfortable with it. But then, exactly how many opinions would we get, and how many good doctors would pass because they don't have my whole file? The question will become if I'm desperate enough to agree to crowd sourcing, I think.
What about it? Would you crowd source your symptoms if no one had been able to find lasting answers for the past 15 years?
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