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By Charles William Potash 

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I haven’t been very good about sharing our CGM experiences so far. Sorry about that. So busy lately. There’s always something going on. Today we celebrated Ben’s fifth birthday with a carnival-themed party in the back yard. I’m still picking whipped cream from my ears and eyeballs from the pie throw game. Seemed like a good idea on paper. Man, those kids launched those pies at me with a vengeance!

So, the CGM (continuous glucose monitor).

Started off really good. Got a little bad. Then good again. And bad at the moment. Not so much the accuracy of it. That’s been surprisingly on the money for the most part. Just some of the baggage and burdens of it affecting Charlie.

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Holidays are usually pretty rough on Charlie's blood sugars, but his numbers were decent this Christmas. I think the trouble begins with grazing on appetizers.

"Charlie, how many of those crackers did you eat?"

[shrugs shoulders] "I dunno. Maybe six?"

We either over-bolus or under-bolus. It's a holiday tradition.  

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This is a breakdown of my first use of the Dexcom CGM. It's had its ups and downs, as you'll see. It's been peace of mind and obsession all in one. Mostly, it's been eye opening to what my diabetes is really like these days.

Day 1: I was really excited to start the first sensor. I went through all the setup process. I waited for the receiver to charge, downloaded the software, and prepped my skin for the sensor. The sensor comes with its very own insertion device. The insertion is nothing like the Minimed CGM that I used before. You see the needle in the device, just like you see the needle with the Minimed. However, this isn't a fast, hard insertion. It's up to your own fingers to stick the needle in. Surprisingly, past the initial sting of the needle, it really doesn't hurt at all. Much less than the Minimed for sure.

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I've had so many lows lately that I can't explain, I'm quite disgusted with my diabetes at the moment. I'm not catching most of them before dropping into the 50 or 40 range, plus several have happened overnight. Then tonight, I indulged with sweet and sour chicken and my blood sugar soared into the 300s before I could catch it.

I'm typically pretty dedicated to testing. I go through test strips quickly. My lancet always needs to be changed. The meter certainly gets its use. But sometimes, I just don't feel like checking. Or sometimes, I'm just not in a place to check. Sometimes I'm sleeping.

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Maybe I should have been pleased with the A1c of 7.8. It’s not so far from his best ever.

Neh. Not so much. I accepted the news apathetically, as if just informed by the waitress that they didn’t have Coke, just Pepsi.

Whatever.

For the amount of work that goes into managing this damn disease, 7.8 just doesn’t cut it for me. We/he deserve better.

We returned to CHOP to review the data from the first few weeks of continuous glucose monitoring. On the computer monitor, we could see the moments in which the jagged blue line (indicating the sensor) seemingly fell off the screen and disappeared.

"Ah, that was when Charlie decided he needed a break from it."

"Oh, that’s when the sensor came out."

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When I inserted the first sensor on Saturday, I thought it might give me a little trouble. It'd been through a lot in the last months (traveling around in my "everyday" case and moving from fridge to backpack to suitcase multiple times). It looked old, it looked like it wouldn't work. But I gave it a shot anyway.

And my suspicions were confirmed. It gave me two error messages before showing me a steady level in the 50's when I was perfectly okay. Instead of messing with a crazy sensor and wondering about its accuracy for days, I changed it out. I had an entire new box of them anyway and I don't use them often enough to be upset on throwing one out.

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There is a box sitting in my mud room from Medtronic. It’s a box that contains something really exciting and slightly terrifying. Charlie has seen the box and its contents. He’s seen the size of the needle and he wants to go ahead with it anyway. He asks me every day if I’ve called to set up some sort of training in how to hook this baby up.

There have been too many times in the past six months when we shook our heads in frustration and said "we can’t go on like this." Too many times when we’ve said, "something needs to change."

So, now there’s a box in the mud room.

I wonder if the restrictions are easing now that insurance companies are seeing how beneficial continuous glucose monitoring can be. I remember reading in the blogosphere not too long ago about the flaming hoops that needed to be jumped through in order to get coverage.

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Now that I'm through with the stress and variablity of college, I'm really determined to get my diabetes into control. My goal last week to get into the 165 to 170 range didn't happen. I only hit 175 due to some sticky highs over the weekend (thanks to a sunburn I believe). I'm still working, still trying to keep my entire life straight, still attempting to keep my head above water.

I've decided that I need to use my resources to get where I want to be. In order to keep my blood sugars down and get my A1c into the 7% range again, I need to utilize everything that I can get my hands on. That includes the newest, best technology.

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