#DBlogWeek – Day One. To share or not to share?

diabetes-blog-week

Yay!!! Diabetes Blog Week has officially begun. Myself and many others will be posting for the next 7 (seven!) days. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to the first day’s subject:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

Well, um… my endocrinologist already reads my blog. Not every day, but enough that if I post something about a terrible low, for instance, I’ll probably get an e-mail within the next week or so.

What do I wish she, and my primary doctor could see about my daily life with diabetes? Probably that my life isn’t perfect, but I’m living. And I’m living a pretty good life. Sure, there are tough days, but I keep on going. It’s not the tough days that define me. It’s getting back up after I’ve been knocked down by this disease that means everything. And if I’m having a hard time getting my BG up into the hundreds or down into the hundreds, it doesn’t always mean I’m screwing up. Sometimes it means I’d be even worse off if I wasn’t trying so hard.

But honestly, when it comes to me and my endo, there’s not much I don’t share. What? What’s that? You’re honest and open with your endo? In what world does this happen?

It happens in a world where your doctor speaks your language. Where your doctor wants to hear what’s going on with you… so if updates are needed in your care, you can discuss them. It happens in an atmosphere where the object of an appointment is both to measure how you’re doing and to discuss what to do in the future to make you better. Such a universe does exist, and I encourage you to find it if you haven’t already.

Now, what do I hope my medical team doesn’t see? I hope my doctors don’t see how concerned I am about my weight. I’m doing what I can to keep from gaining, but my metabolism just isn’t helping me these days. Still, I’m doing what I can. But I could use the help of a dietician. I’m still eating a lot of junk. Anyway, that’s probably the top of the list.

Other than that, my medical team pretty much knows everything. And that’s good. My doctors can help the most when they know the most. It goes without saying (but I’ll say it anyway), two-way discussion without making a patient feel guilty is worth its weight in gold. Hope your medical team is 14 karat spectacular!
 
 
 

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Comments

  • Scott E  On May 13, 2013 at 11:29 am

    Ah, email… that’s one thing I wish my endo did (I had a previous endo in Philadelphia who would use email a lot – it’s easier and less intrusive than calling and leaving a message with a receptionist – but I guess HIPAA put an end to that).

    I agree with you on the honesty. When a different previous endo (who I’d confessed my fear to) stated “I’m not going to yell at you”, my whole attitude changed. I’m not there to impress him, he’s there to help me. It’s an important, though difficult concept to accept — especially growing with diabetes since childhood where we DID try to impress and gain approval of our caretakers.

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    • StephenS  On May 13, 2013 at 12:35 pm

      Scott, from a HIPAA standpoint (HIPAA is a USA-based try at protecting patient privacy, among other things): The thing is, if you know who I am and I’m giving details about my care via the internet, I’m responsible for flushing a lot of the patient privacy right down the old porcelain convenience already. So I tend to think that doctors are sometimes using HIPAA to hide behind so they don’t have to share with you. But that’s another blog post…

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  • Alanna  On May 13, 2013 at 11:32 am

    That’s AMAZING that your endo will email you. WOW.

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    • StephenS  On May 13, 2013 at 12:33 pm

      I should clarify a bit here by saying that my endo will usually bring up something on the blog in person rather than via e-mail, though an e-mail response to something is not unheard of. And we have shared e-mail on other things on an ongoing basis (most recently, sharing Dexcom data from my study). Thanks for commenting!

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  • theperfectd  On May 13, 2013 at 11:35 am

    Jealous!

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  • Jocelyn Foster  On May 13, 2013 at 3:59 pm

    Sounds like you have a fantastic team behind you! I can email my nurses and it is awesome 🙂

    Like

  • Karen  On May 13, 2013 at 5:54 pm

    I love that your endo reads your blog and will email you about things that happen!! And I think you get extra credit and are extra brave for admitting what you don’t want them to see, knowing full well they might read it.

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  • kelleykent  On May 15, 2013 at 3:26 pm

    Sounds like you do have a fantastic team-that’s awesome they read your blog and follow up with you-so jealous!

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  • Scott K. Johnson  On June 11, 2013 at 9:42 pm

    So glad to hear you have that kind of relationship with your endo. Makes a HUGE difference, I think!

    Like

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