DBlog Week 2013, Day One: Share And Don’t Share

Click for the Share And Don’t Share-Monday 5/13/13 List of DBlog Post Links

DBlog Week is an entire week in which diabetes bloggers will be posting daily using pre-determined writing prompts. I’ve never written every day for a week before, so this is going to stretch my brain in a new (and hopefully interesting) way. I can’t promise that the chaos of my life won’t interfere….some posts may happen in the wee hours of the night….but I’ll do my best to write on every topic!

So here goes….

“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?”

First off, our endo provider is also a parent of type-1 diabetic kids, so I know he already “gets it” in the visceral sort of way that providers without type 1 kids can’t. All of the anxiety, stress, worry, chaos, uncertainty, and fatigue that I feel is something I know he understands. That’s a blessing when it’s time to come in for those dreaded check-in appointments.

So for all the other providers out there who don’t have such a personal connection to Type 1, I wish they could see that I eat, sleep, and breathe diabetes. It’s ever-present in my mind; sometimes at the forefront, when I’m in the middle of carb counting or a set-change for instance, and sometimes just as a low-level anxiety, like a mosquito buzzing in my ear.

I download insulin pumps every two weeks to search for patterns and make pump adjustments. I memorize food labels and ingredient lists. I organize and keep inventory of our myriad diabetes supplies. I skip sleep to make sure I get middle of the night blood sugar checks and corrections done. I read about diabetes. I research available technology. I troubleshoot, and I problem-solve, and I teach, and I teach some more. I haggle with our insurance and mail-order pharmacy for hours. I worry about exerting too much control over their food choices. I worry about exerting too little control over their food choices. I worry about everything, and yet I know that I’m doing the best I can.

I take that on as a mom so that my kids don’t have to feel that, and so it doesn’t dictate our family life. I keep a straight face even as I’m stressing about their upcoming A1C results, so they don’t ever feel like they’re burdening me. I talk with them about their diabetes in an age-appropriate way, all the while thinking about the very real and life threatening implications of the disease.

It’s a lot, and sometimes it’s overwhelming. What I never want my providers to see (but which I have to cop to), is that we sometimes go 4-5 days on an infusion set because I don’t have a great system for remembering to change them. My kids eat more treats than I’d like and is good for them. A lot of the time we’re rushing around and I do things like forget their diabetes kit, or that they needed more strips. Lancet-changing….doesn’t happen.

An although I know I’m doing the best I can, there’s always room to do better. I’m going to be so happy when I’m doing enough to finally see some good Hemoglobin A1C numbers. More on that another time….

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