Day 6: Display Off

display off



If someone were to ask me, “How often do you use a CGM?” I would say “Almost always.” In fact I think that was Question of the Day this week. I love the constant display of blood sugar graphs. It’s the first thing I grab in the morning so I can see how I’ve been trending overnight.

Last week was an extremely DISPLAY ON week. The pancreas showed everything; each time I got a bit of insulin and the current BG on one side and a CGM graph on the other where I could look retrospectively for up to 24 hours. These graphs were also transmitted wirelessly to the nursing office in the hotel on a big, 26-inch computer screen and available for the study designers as well. They were all tracking my every blood sugar all day and all night.

Not this week.

I’m struggling with that. Constant adjustment and adaptation is the one of the best ways I can describe diabetes. Do we control our diabetes or does it control us? I battle with that question every day and it affects how I approach my management. Last week my diabetes adjusted itself. As soon as it looked like I was trending upward I’d get some insulin and the same with glucagon in the opposite situation. It made those decisions for me and let me see them. This week is the opposite. My graphs are blinded and I’m ALWAYS ADJUSTING.

On the first day off the bionic pancreas I’ve had to do much re-adjustment. I’m back to the frustrations of carb counting, worrying about going low in the middle of a work out, wondering why my blood sugar just “won’t come down.”

I woke up and I saw an 87! “YES!” I thought, “This day is going to be great!”

I had a bit of juice knowing I was going to walk to the T, arrived at work without eating anything, and suddenly I was 282 … 282 an hour later … then finally, 174. The worst part was, I felt high. I had the droopy eyes, that constant feeling like I had to pee, and then the fatigue set in … oh the horrible feeling was back! NO!

Is it because I’m still using Humalog instead of Novolog like I normally do? Was I actually getting more insulin last week than my usual routine? Am I just mentally exhausted and overwhelmed by the whirlwind experience of the last 5 days? I thought I would be more motivated to jump my diabetes back into the best possible control, but no. I feel BLAH.

The funny part is this open loop part of the study requires me to perform the following tasks and I’m more than willing to comply:

· Take a photo, with the camera provided, of all food I consume.

· Log all my blood sugars with carb counts, exercise, and any hypoglycemic treatments in a binder. Second grade style.

· Use the “big red brick” called the Hemocue to calibrate the blinded Dexcom.

I’m also happy to remember to have the additional supplies. I’m happy to make sure the Hemocue strips are taken out of the fridge and ready to bring to work (they can only be out of the fridge for 72 hours before expiring).

I’m happy to do all of THOSE tasks, but why can’t my body adjust itself?

I don’t want to count my carbs anymore. I want to go back to vacation mode. Why isn’t my insulin working? My sites were in my stomach all week and I decided that using different real estate on my butt might give my tummy a little break. Maybe that’s the reason it’s taking so long for my blood sugars to come down?

Even tonight, I ate some veggies and a tiny bit of pasta. I measured everything in a measuring cup, something I am guilty of not doing most of the time, and still … 265 post meal. I even gave the bolus half pre-meal and half post-meal to prevent the immediate drop in blood sugar and the anticipated plateau of high BGs through the night from the carbs. BLAH. It is going to be a week of adjustments both physically and mentally.

My body was incorporating different hormones and using different doses to “try” me. The muscle memory from even the smallest thing, like glancing down at my pump to see what time it was, that was second nature last week, I realized I couldn’t do. I was just getting adjusted to the feeling of not glancing down at my pump. Those pumps didn’t have that option, and now I do. Each time I hear the standard “reminder” tone from the iPhone, I immediately think “oh its time to do a Hemocue check” (the blood sugar test I would do every 2 hours during the closed loop).

Although I am able to wear my own personal CGM, so I can track my BGs, the thought of carrying around another device is weighing me down and having to make that adjustment and remember one more thing just adds to the lists of “chores” diabetes encourages us to perform day after day.

Go back and read Anna’s story from the beginning.

Day 1
Day 2
Day 3
Day 4
Day 5

Continue reading about her journey Day 7

Anna Floreen

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