Hmmmmm.....where to start the twisting, turning tale of confusion, stress, woe, and immature impulsiveness?
I guess I’ll start at the middle. Just kidding. I’ll start at the beginning. In the back of my mind I was still pissed off about the discrepancy between the BG meter and the Guardian on Christmas eve and Christmas day that we’ve already covered in an earlier post.
By the way, I’ve since looked over the “trace” I downloaded from the monitor and compared it with the pump download and my food log. Looks like, once again, I had mislead myself and every one else too. Yes, it is true that on Christmas eve the girl had me at 97 (still above my new low threshold alert) while I was really at 66. But looking at the trace she was getting there real quick!). I’m still pissed off about the 31 point spread, but nothing was really working wrong. Besides, I was able to watch the trend. We knew it was dropping.
On Christmas day when the girl went the other way and had me at 120 when the BG meter had me at 171 the complete picture is also not as it appears. Turns out an hour later I was at 74. I don’t know why I didn’t remember that when I was writing the post. This time the girl was just ahead of the game. I’m finding that the numbers that piss you off are the ones that stay in your head.
Medtronic soooooooo needs to have a little screen on the monitor that shows the trace over the last eight hours. It would make it so much easier to internalize all the data coming out of the system in real time. It would make it easier to make judgments “in the field.” It would also greatly reduce the over-reactions of hot-heads like me to a reading or two that are out of whack. When you can see the whole picture, a funky reading doesn’t freak you out as much. Nothing beats a picture. When you are looking at nothing but numbers the only ones you remember are the ones that are “bad.” When you look at a picture, you get just that: the whole picture. Failing a screen on the monitor, maybe some sort of interface with a PDA. That would be great (hint, hint).
For what it is worth, one of the problems with the whole down-load system is that the dinosaur of a dock uses a nine-pin mini serial port. Who on earth has those anymore? My house computer is a lap top. Nothing but USB ports. I shelled out 45 bucks to Circuit City (or was it Comp USA? Well, same difference) for a serial-to-USB adaptor but it didn’t work. That has me downloading at the shop and I don’t do it every day. If I can get set up to download at home I might get better about investigating strangeness right away. It would be great if the next gen dock was USB so that you could plug it into any computer on the planet.
So, as I was saying, I was still irritated and overly sensitive to the holiday performance of the system when the Macaroni & Cheese Incident happened.
Ahhhhhhh.....Mac & Cheese. My all time favorite comfort food. Always a BG disaster. Since Dx, I can rarely convince my wife to make it for me. We use a modified recipe from the Fanny Farmer cook book. White sauce with a small splat of brown mustard. Long horn colby cheese. Baked in the oven until crispy on the top. Mmmmmmm.....
Jane at the Endo's office suggested that with pasta, and the heavy fat load of the cheese, a combo bolus might be in order. I convinced Debbie that with the combo bolus, and the girl to watch over me, it would be a slam dunk.
That was the start of the trouble. After eating I kept a careful eye on the BG, using the Guardian as a trend indicator.
Where am I at? Click. Good, everything looking OK. Where am I at? Click. Good, everything looking OK. Where am I at? Click. Good, everything looking OK.
At each check I'm between 140 and 170. This is looking really good. I'm riding 3 hours with 60% on top. I've carefully measured the capacity of the mac and cheese pan, totaled the carb load of the entire recipe, and then reverse engineered the count for each serving by dividing the total recipe by the volume of the container and multiplying the unit volume by the serving size.
Bottom line: two cup serving equals 70 carbs.
At two hours post meal the pump vibrates softly: check your BG, please. Quick glance at the Girl. She clocks me in at 117. We have this so under control! Well, that might be a bit low, but the numbers have been moving pretty slow. Time for a finger stick.
What? What?! 243! That's 126 points off! That is sooooo far beyond a tolerable margin of error that I just want to scream. Or break something. Or scream and break something. Or maybe break something first and then scream. (This isn’t the hissy-fit, that happens in the morning.)
The combo bolus is still playing out, so I can't take a correction. An hour and fifteen minutes later I check both again. The finger stick shows the BG has drifted up to 263 and the girl is now 190. A few minutes later and she gives me above range alert. A day late and a dollar short.
She's closing the gap, but that is still a hell of a long way from where she ought to be, and a hell of a lot later. I’ve got my above range alert set at the very, very conservative (read low) BG of 190. The idea of a 190 setting is so that you can’t get anywhere even near to 263 without a heads-up from the system. Clearly, it could be working one hell of a lot better.
To add insult to injury I had no idea how long I'd been up there. I had no clue or indication from the Guardian that I was running high until nearly four and a half hours after I ate. The finger stick knew two hours after, but that was a pretty high reading. I'm guessing that I must have actually crossed over the 200 threshold within an hour of eating. Guardian was three and a half hours late to the party. I went to bed pissed off and muttering about checking ketones.
So much for technology, I thought. Then came The Night of the Correction Boluses (good title for a low budget diabetic horror flick, don’t you think?). That's the six corrections I lead off with. You've probably forgotten about those because you've spent the last three hours reading my long winded post.
Fast forward to the next morning.....
Picture me lying in bed. Frazzled and exhausted. This was the day I was going to finish all those little projects that needed finishing. The plan was to jump out of bed at dawn and get after them. It is 10 am and I can barley open my eyes. I am frustrated... no.... worse. I'm just plain mad. I’m mad at everyone. I’m mad at myself for buying new technology before it has been proven. I’m mad at Medtronic for making me pay through the nose for a system that is more a beta test than a clinical product. I’m mad at Debbie for making a huge batch of fudge that everyone agrees is the best they've ever tasted. And I’m mad at God for giving me the fucking diabetes in the first place.
I sit on the edge of the bed, fuming for about three minutes. I’m at the end of my rope, and then the rope snaps. I pick up the Guardian monitor, heft it in my hand for a moment, and then I turn off the power button. Confirm? she asks. I press ACT. With a soft beep her screen goes blank. I wonder if I’ll ever turn her on again.
At the time I didn't know. I was throwing in the towel. Freeing myself of the stress. Better to have no warning system at all than one that sometimes works, I thought through my pathetic and fogged brain.
Then I pulled off the many tapes, the transmitter, and a $40 sensor that had only begun it's three day run, and threw it into the trash. (This is the hissy-fit).
Next I emailed Medtronic and gave one of the nicest, most helpful people I know an earful he didn’t deserve.
And then the emails from my readers started to arrive. More than I’ve even received for one post. The “Light Bulb Moment” post had hit a cord. The out pouring of enthusiasm for the system and my new sense of how to use it was overwhelming. Here I was throwing in the towel just as the rest of the world was rejoicing. Doubt came creeping in. Was I doing the right thing?
I started to study the data on the computer. It really didn’t look as bad as my mind was making it out to be. Had I over-reacted?
Then Rio wanted to go for a walk in the front yard. He had not asked me in months. Now it is worth mentioning that the front yard is 20 acres in size. Don’t get too excited, out here 20 acres isn’t that much. One of my neighbors has something like 40,000 acres. When I bought our place back in ‘88 or ‘89 I was able to get the entire chunk of land for ten grand.
Twenty acres in a Kansas wheat field isn’t much to look at, but we have wonderful micro-topography. You could walk this land everyday of your life and see something new every day. There are hills, cliffs, dry river beds. Meadows, groves of Juniper and Pinion. Big rocks, red earth, and more types of cacti than you can count on both hands. Petrified wood and fossils. I love it. And so out we went, hand in hand. Rio and I went down the road, then along the arroyo, and onto the back meadow behind the butte.
That’s where it occurred to me: what would happen if I had a fast-moving hypo from the exercise and passed out? It was just me and Rio. He’s three. Would he be able to find his way back home again? Or would he wander off in the wrong direction and get lost in the maze of canyons that lead up to Apache Mesa and mountain lion country? If he did retrace his steps back home, would he be able to lead Deb back to where I was? Or would he just sit next to me and cry, pulling on my sleeve and begging me to wake up like he did when I went hypo when he was two years old?
Suddenly, I felt very small, very stupid, very irresponsible, and very naked without my Guardian. Here is a piece of technology that in at least once instance had intercepted a hypo that I was in no position to even suspect; and I took her off because I....well why did I take her off? Because I got pissed off over three bad readings over three different days? And it takes, what? 288 per day?
When the little one and I were back home safe and sound both my wife and my mother (at different times and 350 miles apart) had fits when they learned what I had done. Their take: who cares if it works perfectly all the time so long as it does it’s job most of the time.
Later in the day a friend called innocently enough and made the mistake of asking, “So what’s up?” After 20 minutes of my babbling she said, “well wouldn’t it still be worth it even if it only worked half the time?” I dunno. I guess so.
But the money....“This is your life we are talking about, it is worth more than money,” echoed my wife’s words in my ears.
We have to be realistic. We are placing incredibly high tech mechanical devices into the most complex, hostile, and unpredictable environment in the universe: the human body. And I expect perfection?
I sheepishly snuck into the bathroom and quietly hooked back up again.