I’m a librarian. I like knowing stuff, or having it at my disposal if I need to look it up. Therefore I am inherently a fan of having access to a bunch of my medical info…except when there isn’t a good explanation to go along with the data.
Finally got the blood tests done (that were a month overdue, my bad!) Got an e-mail literally the next day with a handy link to the results: yay! They even came with charts. Yay!
So…layman’s terms: I know my numbers were too high last time. Are these numbers low enough? Who knows…because not only did the online link to the test results not contain any kind of explaination.
I could consult Dr Google, but I’d prefer not to (because I know how unreliable that Dr Google can be). So I’ll wait for an update from my doctor and meanwhile mull over the value of patient information without actually telling us what it means.
When you are at the NIH Clinical Study for a Natural History Study, your healthcare life is pretty darn good (well, besides the fact that you have medical stuff going on that landed you there in the first place!)
Every doctor you see in the course of your study protocol is an expert. Every doctor you see knows your rare disorder. Every doctor you see is interested in you and your overall health – not just their specialty.
One can get quite spoiled.
That’s all the preface to my newest medical slight debacle: I refuse to start a new treatment for a newly-diagnosed condition without seeing a specialist first. Like… on what planet does that make sense for patients?! Do people actually agree to that?!
I know I feel icky. I know my thyroid numbers were weird. But that’s the extent of my knowledge… and there’s no way I’m blindly starting a new-to-me medicine without at least seeing a doctor! <ends big over dramatic sigh>
I fear (but also love) that the NIH has thoroughly spoiled me. I deserve it. Everyone does.
I have a few different medical things I need to get looked at. And I’m dreading the process of doing just that. Not even dreading the appointments, etc. themselves (well, except for the dentist – that’s an entire post in itself). Being medically complicated is, well, complicated. Nothing seems as cut and dry as it should be. I like my specialists, they at least seem to have some idea of what’s going on and what their part is. This is good, but I miss the days of pediatrics all being in one building and who all seemed to work well together. My pediatrician was also my geneticist (and currently volunteers at the hospital! I ran into him last year when I was going in for an ear infection…), and knew all my other specialists well.
Now it kind of seems like the specialists all kind of know each other, but the internists don’t. Which I guess is fine since my specialists are more important to me ultimately, but it can be annoying. Especially annoying since my HMO doesn’t give me the option of making specialist appointments online (seriously, who’s going to make too many doctor’s appointments?!). Not that I necessarily mind calling but it’s just funny that we’re not trusted to actually make our own appointments. Had a hilarious incident a few year where some confused employee tried to tell me that my doctor didn’t exist (turns out I needed to call the Eye Department directly for that one, who knew?!)
So I kind of feel, as a reasonably well-informed medical consumer who has unique health care needs, that I walk a fine, fine line between informed and being a pain in the ass. I was raised as an active participant in my own medical decisions and try to maintain at least a basic level of understanding of what’s going on and what I should be doing. But I also don’t want to be that patient who all the doctors are talking about around the water cooler…
(And, in case you were wondering, the fine, fine line reference is from Avenue Q)
Natalie Abbott 