LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

My Photo
Name:
Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Thursday, December 29, 2005

Hissy-fit

Maybe it was all the sugar over Christmas. Maybe it was the lack of sleep from a night that required six correction boluses. Yeah, that’s right. Six. One every two hours for almost 12 hours. All night long and well into the morning. Maybe it was the fact that I’m on vacation and I don’t really deal very well with time off. But I had a full blown hissy-fit the other day.

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.

243.

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.

5 Comments:

Blogger Scott K. Johnson said...

You know Wil, it's most hard to not be frustrated. Diabetes is a real bitch most of the time.

It requires boatloads of patience, which at most times is very hard to muster up. We already have so much to deal with. Is it wrong of us to expect all of these tools to work the way they should? No, it's not wrong. A bit unrealistic maybe, but hey.

After 25+ years of this, the one thing that keeps jumping back up is that patience. Yet it's the hardest thing to do!! There are days when you get beaten to a pulp by the big D, and you have to find a way to get through it. You can't take a day off of life because of it. It sucks.

Some days you have to take a few real deep breaths and remember that you are doing the best you can. You can't micromanage diabetes. It just doesn't cooperate with that style of management.

Looking at the big picture, the tools we have today are so far advanced over what was available just a little over 25 years ago. Back then people were testing their urine for sugar - can you imagine? Trying to make therapy decisions and adjustments based on information that may be hours old and only fairly accurate? Now you've got a box on your belt that can give you a good idea of where your actual blood sugar is at any given time. Incredible.

It is again frustrating though to know that we have to let these tools mature.

But enough with the tools - give me a cure already! Do you think Medtronic Minimed has "find a cure for diabetes" high up on their project priority list? How much revenue would they lose if diabetes was cured. There would be a huge impact on the diabetic economy. It's very frustrating. Makes you want to smack the next company that comes out with some new fangled tool to help you "manage". Sons a'bitches.

But again, patience. Insulin itself was discovered around the 1920's. That's not that long ago. It's so hard though.

I think this stuff is especially hard on you because of a couple things. One - you are one of the first to go through it. You don't have the experience of others to reflect on or see if something is normal. Two - you like to analyze. That can be good - except for the micromanagement.

Diabetes is so hard to not micromanage though - catch 22.

There seems to be lots of those damn catch 22 situations in life too. We seem to do Ok most of the time.

8:10 AM  
Blogger Kerri. said...

January 27th marks my two year anniversay with the pump.

Over the last two years, I've had at least 18 kinked cannulas. I've had some spoiled insulin and bubbles in the tubing. The kitten bit through the tubing twice while I slept. I've had ketones because of these events.

I have ripped out infusion sets accidentally while riding my bike, making the bed, moving out of my apartment, chasing my nephew, on a Bouncy Castle at a birthday party, having sex, at the gym, in rough surf at the beach, after the tubing caught on a doorknob, and once while I was brushing my teeth and I slipped in the bathroom.

I've spent over $8,500 out of pocket to keep myself in test strips, cartridges, insulin, infusion sets, IV prep tape, ketone strips, syringes, lancets, and AAA batteries. Oh, and glucose tabs.

I've had many a hissy fit.

But I've seen my A1c gently fall. And I've defeated the Evil Cotton Wool Spot. And I have no complications after almost 20 years as a Type 1. I have a loving and supportive family, boyfriend, and online community.

After all the frustrations and the chaos and the fear and the ketones and the bloodsugars ping ponging and the tears and the rage against this machine, I still know it's worth it.

I'm glad that you were brave enough to admit that you ripped it out.

And I'm glad you plugged back in.

(The Night of the Correction Boluses... I'll talk to Chris and see if we can this into pre-production. Are you ready for your close up?)

8:11 AM  
Blogger julia said...

Dood. It caught the HYPOS on time. Those are the readings I'd be more worried about, rather than the three incorrect highs you got. Hypos scare the shit out of me. Hypers, not so much. Hypers you can correct. Yeah, you're gonna be pissy and cranky and all kinds of ugly stuff, but you're AWAKE and concious and that beats sprawled out on the floor while your three-year old sits next to you, crying.

I'm with your wife on this one. You're lucky she didn't give you a big ol' dope slap up the side of your head while she was reading you the riot act. Jeesh.

8:15 AM  
Anonymous Anonymous said...

The good news is that the sensor augmented pump (522/722) will have the ability to show a trace of the blood glucose trend on the pump screen. (There won't be a seperate monitor, the pump will also be the Guardian monitor.) Rest assured that trend alarms are also on the target list for continuous monitoring.

Remember that using the Guardian you are at the cutting edge, a pioneer. Insulin didn't always work so well at first, and home blood glucose monitors that we take for granted certainly didn't. You've got to accept these limitations and work with them, because it is the only way things will ever move on.

10:05 AM  
Blogger Wil said...

Scott--I try, like all of us, to keep my soul in balance. Sometimes I succeed better than other times. Someone should make us all "Diabetes is a Bitch" T-shirts! Or "Diabetes: never a day off."

Actually, I think we are all damn lucky, maybe even blessed, to have diabetes here and now, rather than further in the past. Our treatment options are very good and getting better.

I think your comment "You can't micromanage diabetes" is extraordinarily profound. I've been thinking about that since you posted your comment. The more I think about that, the more it has influenced my thinking about treatment and my approach to managing diabetes. I'm going to be focusing some posts on this in more detail soon.

As to a cure. I'm not holding my breath for lots of different reasons. And in fairness I don't think Medtronic does any work with meds and cures (some one set me straight if I'm wrong about this). They are a medical equipment company and a damn fine one. Their mission is to make our lives as tolerable as possible. They've left it to others to work on a cure. That's a good thing--I don't think the two jobs can be done by the same folks.

But thanks for all the supportive words. I was actually in a better head space by the time I posted, but I felt the "journey" was valid and would be of interest to all of you.

Keri--ahhh, dear sweet Kerri. I always love your writing. We'll start a hissy-fit club! I think depression and frustration are part of the diabetes package. But so is joy and success and all that comes with that side of things. Right?

Julia----Doodette. You are so right. I deserved a big ol' dope slap. Lucky for me she's not the type. It'll probably cost me another pricy pair of shoes down the road though.

Anonymous--The next generation pumps are going to be very cool. I'd love to get my hands on one to blog it. The next gen Guardians will be better to, and I know without us pioneers there will be no settling of the wild continuous west!

9:57 PM  

Post a Comment

<< Home