Et tu, CGM?

I come to praise the CGM, not to bury it. With all apologies to William Shakespeare, I've been thinking this mangled version of his line from "The Tragedy of Julius Caesar." (The real line being "I come to bury Caesar, not to praise him.") The meaning is the same, though.

I'm three days into my restart of the CGM, after an aborted start several months ago because I suddenly had trouble finding sites for my insulin pump infusion. This time, I used my "hip" (what a great euphemism!), to preserve my abdominal sites for the pump. The introducer needle wasn't that painful going in - or so I thought, until I nearly passed out. Okay, so 5 minutes later, I was recovered enough to finish the setup. I guess I have more muscle in that site than I expected. I also seem to have a really strong inflammatory reaction, because, just like before, it took an extra couple of hours for the device to start taking readings (beyond the two hours they say to wait before "calibrating" by telling the device what my real blood sugar level is, as opposed to the interstitial-fluid sugar level that the CGM measures).

So, I got it going. The up side is, it really works; it gives really accurate readings (although with just enough of a time delay not to be a useful basis for insulin doses, at least when the BG is changing rapidly). But. That first night, a couple of hours into my precious sleep, it starting buzzing (like a car alarm, I swear), to tell me the sensor was out of range. My insulin pump, which receives the wireless signal from the sensor in my "hip," was under my pillow and on the opposite side of my body from the sensor. The device can't send signals through the body. So any time I roll over in my sleep, it'll go out of range, and if it stays that way for 40 minutes, the car alarm buzzer goes off. I grumbled and moved the pump to the correct side of my body and tried to stay that way the rest of the night. A couple of hours later, the thing beeped again to tell me the CGM battery was low (which it shouldn't have been). I grumbled, got up, pulled the transmitter away from the sensor and put it in the charger. Then stuffed it in a drawer, because the charger light blinked in the dark like a police car light. At least I could sleep the rest of the night.

The next night, I got another wakeup call because of an out-of-range sensor. Then H woke up a couple of hours later. Then, after a couple of hours of fitfully trying to get back to sleep, the CGM buzzed again - to let me know I would have to calibrate in another 45 minutes. And all I wanted was another half hour of sleep! I didn't even have the low or high BG alarms set.

My sleep is precious to me. I already don't get enough. I'm one of those folks who need at least 8 hours a night. I usually get about 7. With the CGM, it's down to 5, and it's like being a new mom again, with so many interruptions I don't get to dream enough, and daytime feels like one long dream. As a result, it's been nearly impossible to do my work, I've gotten to work late every day, my hunger level is way up (harming my blood sugar), and I've had to drink way too much coffee (further affecting my blood sugar). I'm sure it's affecting my driving, too.

I called the CGM manufacturer yesterday (Medtronic, the same as my pump manufacturer). Now, I should say that the Dexcom I used during pregnancy had the same problem, so I knew it was unlikely they'd tell me how to turn these alarms off. I just wanted to give them a piece of my mind. Predictably, the rep said those alarms can't be turned off, to be sure the device is working so it'll alert me if my BG goes low (never mind that I could, and did, turn off the actual low alert). I told him I don't need the device to alert me to lows, I just want the data. I've managed to live 25 years with this disease, without a device warning me about lows (I told him), and suddenly they think it's their responsibility to be sure I'm alerted to lows? How paternalistic (I didn't actually say that part; too bad!). The rep suggested I keep the pump right next to me, closer to the sensor. But with a husband and two cats in a queen-sized bed, that's not reasonable. We can't fit a bigger bed in our room (would insurance cover a house renovation?).

Really, am I the only one who thinks it's abusive to force us to endure sleepless nights, just to know what our blood sugar is during that traditionally "black-box" time? It's like transporting the hospital environment into my very own bedroom - like having doctors and nurses interrupting my biological clock to tell me what my body needs, any 3 am of the week! No, thank you.

So why am I still putting up with it? because I'm desperate to get that information. But I call tell you, I am not going to use this device more than very occasionally. It's such a shame; if the manufacturer would just get out of the way, I could make so much better use of this technology.

I know, the whole point of being online with this stuff is to help and get help from others in the same situation. I'm really hoping someone else out there has figured this one out. If you have, please let me know! If not, let's get them to fix these devices so they'll really work.