Monday, August 23, 2010

Reclaiming my throne

Last Monday, I had an appointment with my CDE. As I'm sure you know, such an appointment comes with a little baggage. Not only is she the recipient of all my food/insuling/BG logs (insert dirty, scowling look here), she's also the person I rely on for basal tweaking and nutrition information. I haven't been so thrilled with this interaction as of late, so I'd been dreading the visit. And I'm talking the kind of sheer dread that had my BGs hanging out - sticky, unmoving - in the 180s until dinner time.

I came armed with logs and Dexcom graphs. She - once again - lowered my frakking basal rates. I - once again - felt confused and disappointed, since I knew that lowering them would result in higher average blood sugars for the next three days. She said stay the course, try these new rates, and send my logs in on Friday - she'd share them with my endo, and maybe I'd get my coveted little head pat after that. So I listened to her. After all, she's the professional, right?

Fast forward to Friday. I send her all my logs and this email:

Attached are my logs and Dexcom graphs since we saw each other on Monday.

The two things of note are the BG mountain on Thursday (which is a correction mountain that's the direct result of the graham crackers I overtreated with after over-bolusing for the pasta - I give myself an F and declare to only treat with juice for the rest of my life now) and the weird jump I had last night between midnight and 4 a.m. I had a horrific nightmare that woke me up around 3. I got up, got a drink to shake it off and went to bed. 30 minutes later, my high alarm is going off and I'd jumped from around 80 to 140. Have you ever heard of nightmares doing that before?! So lame!

Anyway, here they are. Please, oh please, tell me something happy!

 Her response?

Ok, let’s make these changes:
Change time of 6 am basal to 6:30
Change 9 am to .35
Change 10 pm to .40

I don't know that I can accurately convey how upset I was. No mention of the endo, no explanation of why she's making these reductions in my basals (again!!), no nothing. In the end, I tried to get her to explain exactly what she was trying to achieve with these basal tweaks, and was told she's working on the early morning rather than the overnights. Which was confusing, really, since she was reducing my insulin and I hadn't noticed any lows in the early morning. If anything, I had elevated blood sugars at that time because of my getting-ready-spike. So I, again, asked for clarification. I didn't think it was odd to want to understand the motivations and end goals behind all these basal tweaks...but apparently she did. All I got as a response was "Ok, leave everything the same." Ummm. She wanted to change my basals until I asked her about it? There was a problem with my regimen until I asked for clarification? How in the hell does that make any sense?

Needless to say, I was furious. Still am, in fact. Enough so that I'm on the cusp of staging my own little revolution to reclaim my Diabetes Queendom. No one knows my body like I do. No one knows where I cheat, where I'm SWAGing, where I had a stressful meeting or didn't wait quite long enough between bolus and eating. For that matter, no one else seems to care about these subtleties. So I'm done. I'll send my logs, I'll do my due diligence, but I'll no longer passively accept changes to my regimen. It's been nearly a year since I started on the pump, and it's time I stepped up and stopped letting other people be the boss of me.

6 comments:

  1. Blich...Y'know, I've never seen a CDE in my life, never saw a need to. I've been doing this 38 years, I know my body and how it'll react better than anyone, and I know how to adjust basal/bolus as well as anyone, so it just seems like a waste of my time and money.

    (Then again, I've never logged my bg's either, so what do I know...)

    ReplyDelete
  2. I hadn't, either, until I started at this office - they have it set up so they're your "case manager," and that's who you talk to. Sigh.

    ReplyDelete
  3. I'm only slightly bitter that the insurers natter about "patient empowerment" when so many health care providers don't believe in empowered patients. OK, I'm lying: I'm very bitter about it.

    ReplyDelete
  4. Aw, man. What a great e-mail you sent to her, and what a crappy one for her to send back.

    How about this: I have an appointment with my nice Grandma-y CDE in a few weeks. You can come with!

    ReplyDelete
  5. What The F???? She should be happy that you care about your treatment enough to ask about the changes - and informed patient is a great patient. Of course you need to understand why these adjustments are being made! Not to mention her adjustments make no freaking sense!!! Good for you for taking over your throne!!

    ReplyDelete
  6. Ugh sorry. "Frustrating" is an understaement.

    Since Caleb was dx'd I have yet to be suggested a change with which I agree. His current Endo doesn't even suggest any. I wonder why we go, to tell the truth.

    Post your questions here. The DOC will provide suggestions with reasoning too!

    ReplyDelete