20 December 2009

I would just LOVE to be more engaged with my PCP

And I think she would like it, as well. But every time I show up for what is even a routine visit, she tells me she's going to "get in trouble" for spending too much time with me. She's supposed to sail through the appointment, taking no more than 15-20 minutes to find out what my issues are and what I should do about them (with or without medication), and that's supposed to suffice.

Except that it doesn't. Because 1) I need more time to explain things to her (I have a lot in my head, you see, and I don't shy away from complexity, and 2) she needs the time to really find out what's going on with me, aside from the rash or the spreading poison ivy or the upper respiratory infection, and 3) I need more time to clarify with her the things she's telling me, 'cause unlike some folks, I have a real and pressing need to be involved in my own healthcare, my own life. I need to be WELL, on all levels, not just not-sick (or asymptomatic).

I have tried different approaches -- like making notes about my situation that I can share with her. This is an important thing for me to do, because I have a nasty habit of forgetting important details in the moment.

It's so predictable, you'd think I could stop the cycle. Before I get to the office, I am usually pretty clear about what's up with me. But then I get in there, I get talking to the staff (who are all very nice and also get in trouble for not moving fast enough, because they take too long with me - but we're actually having a human exchange, and it's not taking forEVER, so I don't see why that's so awful)... and I get caught up in scanning through the pharma-company-supplied pamphlets and fact sheets that are scattered about... and then the doctor comes in after a few minutes and asks me how things are in general, and by the time we get down to talking about what's going on with me, I am hopelessly distracted, and all I can do is shrug, sometimes. It's sad, I know. Very sad.

So, I've tried writing down notes and bringing them in. But my doctor tells me to put them away and just talk to her. As though that will be easier for me. It's probably easier for her... tho', come to think of it, I'm not sure why she prefers partial information to a complete picture? She also appears to get a kick out of me showing up with information I found online. It's not like I'm trolling around about.com (my apologies to the guides who work hard to put useful info up there) and relying on amateur infopreneur articles for my sources. I tend to seek out reputable sources, and I take the time to consider what I'm reading. But my doctor just rolls her eyes and says "internet" like it's a joke.

My health is not a joke. My survival is not a joke. My life is not a joke. If I can't get the right information from her -- because she doesn't have time to spend with me -- I'm going to seek it out elsewhere.

Now, I don't mean to beat up on my PCP. Overall, she gets high marks, and she's the best doctor I've ever had. I have awful stories about past experiences, including a multi-year spate of extended (inconclusive) tests in the early 1990s -- I think I'm still trying to build back my blood supply ;) -- and a string of doctors who dismissed me outright or made fun of me or refused to honor my genuine inquisitiveness.

Maybe I've just been walking around with a sign on my back that says, "Dear Doctor, please ridicule me -- and bill my insurance company for the hour you spend laughing at me."

Well, anyway, it's Sunday night after a long day of shoveling 5 inches of fluffy snowfall off my deck and stairs... snowblowing the driveway, and raking my roof, so I'm a little punchy. But really, I would love to be more involved with my PCP. I'd love to be able to email her with questions, or just raise a question without her looking over her glasses at me with amusement that I'm daring enough to guess that the spreading rash over my legs and arms looks like the pictures of poison ivy I've seen online, and my symptoms match that condition. I would love to be treated with dignity and respect, not grudging accommodation, and given the time I need to fully understand what she's saying to me about how to keep healthy... and discuss the ramifications of her prescription with her. (Let the record show that I will NOT be talked into taking prednisone again -- the 'roid rage is just not worth it to me -- I'd rather itch.) I would love to have her get to know me and my quirks and foibles, so she can understand what I'm saying and what it means, without taking it out of context.

All these wishes... I'm not sure if it's going to happen anytime soon, or if it will happen at all. Maybe they're as fanciful as a letter to Santa. But they feel pretty real and pretty important to me. I'll just keep trying. The one New Year's resolution I know I can keep is just that -- keep trying.


e-Patient Dave said...

It's GREAT to meet you, Kay. Looking forward to hearing more from you. I just tweeted that you're "a powerful new voice." New to me, anyway.

Not that I want to give you more to-do's, but it'll help me track you if you add FeedBurner for email subscriptions. I'm flooded these days and don't want to miss anything. Let me know if I can help.

Kay Stoner said...

Great to meet you, too, Dave. I hope you'll stop by again and add your thoughts.

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