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

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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!).

Tuesday, December 13, 2005

Trouble in Paradise--Chapter 3

Sigh. Damn. Well shit. Maybe it turns out the Guardian is just one more tool in our arsenal; rather than the cure-all technology that I had hoped it would be. That I tried to convince myself it would be. That I've been telling all of you it is. I've had some eye-opening trouble. Is the honeymoon over? Not sure yet, but we've had our first fight, and it was a doosey.

So after the messy evening (Chapter 2) I'm headed off to bed, secure in the fact that the two children are now in accord that my BG is somewhere in the 120-150 range. I settle in snug in my bed, curled into a ball like a hibernating snow mouse, covers pulled up to my nose. My head gently sinks into my Sam's Club knock off of the Swedish Temprapedic pillow. Ahhhhh..... time to forget the days troubles. Tomorrow all will be OK with the world. I start to doze off, almost asleep, when the Nazi's beginning bombing London. What??!! A high alarm?

My arms jerk spastically as I frantically try to find the Guardian on my night stand. Try to get my sleeping body to function, try to shut the damn thing up before she wakes the baby. We all know if you wake up a three-year-old who's been asleep more than five minutes they are up all night.

My fingers numbly search for the right buttons. There! Got her quiet. Rio's breathing is slow and rhythmic. No damage done. I caress the surface of the monitor to try to detect the raised button. Light on. I'm bathed in an eerie green glow. Button on the left should be here...somewhere....


Oh yeah? Hmmm....I don't trust you today, my love. I'm going to confirm with a finger stick. I use the faint glow from the monitor to find my little red-lens flashlight. OK now we've got both red and green lights. Very Christmas. Harrumph. I open the Cozmo case and light her up. Blue.
Blue, Green, Red lights. This is very strange. I can't find my glasses so all is a bit of a blur.
Cozmo's take on the BG: 68. You gotta be kidding me. I hold the pump to my nose to be sure I am reading it right.

After most of a day reading hugely low, my Guardian has flip-flopped on me. Now she's reading too high. Disgusted I close her up, and roll over to go back to sleep. Then another alarm. Calibration Error. That's two today. I get up, put on a robe and go to the kitchen to call Medtronic.

Once again I'm quickly talking to a cheerful, real-live-human-being in no time at all. The computers are down, and she admits to not being an absolute expert on the Guardian; but says "tell me what's going on and we'll see if we can work through it together."

I tell her I've had two calibration alarms in the span of a few hours and first the Guardian is earring low, and now high. It is a wild see-saw. The erring high is totally new, and scares me quite a lot. If I get to a bad low before she does, it’s game over.

She asked me, "you're not making any therapy adjustments based on Guardian readings are you?" I guess I hesitated too long, she saw though me. Truth is yes I have--but only to intervene with low readings. I've never taken insulin based on the readings. Still, I know Medtroinc says you should always verify with a finger stick....It's just that she was so dead on... I stopped double checking. The lady at the help line was adamant: "Never, never, never teat yourself based on a Guardian readings. Always confirm with a finger stick. You can Kill yourself...or do your self serious harm." Her bottom line: the Guardian can be wrong. OK I get the message. Loud and clear. She tells me she's worked for Medtronic forever and she's only told a user they could kill themselves twice. Not sure twice before me or including me.

As I chat with her, my naked feet quickly turning to ice cubes on the cold kitchen floor, a horrible thought dawns on me. When I first had the Guardian I didn't trust her yet. I did LOTS of finger sticks, and fed all of them into her. The more you calibrate the more accurate she is. The more accurate she is the more you begin to trust her and the less info you feed her. The less info you feed into her the less accurate she gets. About the time you are fully trusting, she's no longer to be trusted. Catch-22. Sorry people. The Guardian will not save us from finger sticks; but if you keep up the finger sticks, she is still a damn fine early warning system. She's also good for planning therapy adjustments by tracking the data between sticks.

I was so happy I went 12 hours without a sick the other day. Turns out that was not such a great idea. Support line suggests a finger sick every 6 hours if possible.

Also learned that the probe is coated with a Vaseline type substance that can take 24 hours to dissolve in the body. This coating makes insertion possible. The help line folks felt the first day was not the best day for sensor performance. I got an email last week from another Guardian user who told me his ran low the first day. I had not seen that before myself.

Tired and irritated I'm thinking to myself, well if you can't make therapy adjustments and you always have to take finger sticks anyway, what the hell good is it? Peevish on my part.

They ask me to keep the sensor in and email the tech folks the data down load for it after I change it. Will do. Maybe we’ll get some feedback as to what happened.

Over the course of the night I get 6 low BG alarms, all off. Now running low again. I also get a third calibration error alarm. At 3:30 in the morning I briefly consider smashing the damn thing against the wall. I don't get much sleep.

Upon a small amount of sleep and a more restful morning making enlargements in the big darkroom I've come to some conclusions. Too much info makes you lazy, sloppy. I began to use the Guardian as a crutch, not a tool. I found my self not thinking as much about my diabetes as I should. What the hell, I mean she'll let me know if I'm in trouble, right? So instead of planning ahead, I was eating and bolusing more sloppily knowing, or more correctly, thinking---believing?--that if I got into trouble she'd let me know in advance so I could head it off at the pass. That is sloppy control, folks. No excuse for it at all. Perhaps the greatest danger of this new technology: it can make us lazy.

There is a parallel in my other world too. Photography used to take a lot of skill. Then digital came along. I've noticed that shooters are sloppier now, because they can fix it later in the computer. Maybe the result is the same in the end, but I mourn the loss of skill and craftsmanship I used to see in the old days.

New resolutions. I'm ramping up my finger sticks again. Not every hour, but both pre and post meal like all diabetics should. I had dropped down to just doing the pre-meal sticks and just glancing at the guardian after a meal. Now I'm going to finger stick two hours post. This will have a two-fold effect; it will keep me on the ball, and it will keep her better calibrated, so she'll be right when I need her.

I’ve also been thinking about my post a few days ago when I counted up all the alarms. Too many, even for my mess. So I’ve changed my alarm thresholds. My low alarm is now 70 instead of 80. You know, there is nothing wrong with being at 80. When I look at the number of low alarms I've responded to, and the amount of candy I've eaten....I'm going to get fat...Now I'm waiting to deal with Hypo until I'm sure it is the real deal. Likewise I've upped the high alarm to 250. Let's make sure it is a real problem first.

Diabetes is hard work. Bottom line. It is better to just not have diabetes at all...

Tomorrow: a sensor failure


Blogger skytor said...

Hi Wil,
Sorry to hear about the troubles your girl has been giving you. Like you had, I have have a tremendous belief in the power of CGMS's. I have followed your posts since the beginning and most of the time your Guardian seems to have worked fine.

Then, when you changed the set 3 days ago, hell broke loose, the nazis started bombing london, and uninterrupted sleep seems to have vanished from your life.

Could it be that the new site, or the new sensor, is "bad"? Did Medtonic say anything about this, or reccommend you to change sites? Uggghhhh... with the 40$ per set pricetag I imagine it is not an easy thing to throw away a sensor...

Anyhow, good luck on figuring this out, I'm routing for you, and I hope the medtronic tech team can give more advice on what happened!

12:54 PM  
Blogger Elizabeth Snouffer said...

Your middle of the night stories are really poignant. I have had many incidents of icy feet on the kitchen floor standing in a florescent glare of a fridge light trying to figure what I should drink/eat. It is sort of Norman Rockwell-ian in a disturbing kind of diabetes way...
And you are right...the Medtronic people are truly and heartbreakingly cheerful. I have had moments when I have just wanted to scream at them for a in-operable pump and no replacement on a weekend, but they are great --here in the UK too.
As for the Guardian -- I remember, when I started on my first pump, I had such high hopes for it - that I was almost immediately bruised with dissapointment when it dawned on me that the pump was not a miracle and that managing insulin was still a full-time job. The benefits were in the constant drip and my being able to manage that for a better QOL.

I bet that in time, the benefits of the Guardian won't be quite as amazing as you thought, but you will have a better sense of how to put the Guardian to better use for yourself.

By the way, I love your writing...


2:39 PM  
Blogger Scott K. Johnson said...

Yes, diabetes is hard work. It's always going to be hard work, and that's frustrating to have to swallow.

All of these technological advances are great, and I am thankfull for them. It makes a difficult job just a little bit easier. BUT - we are still trying to MANUALLY do what was once self regulated in an incredibly complex system of checks and balances, proaction and reaction. We all know exactly how hard it is to keep a blood sugar near 90 - but yet a non diabetic person's body does it ALL THE TIME! Amazing. The body is truly a miracle.

I think you have definately had one heck of a ride over the past few days, but you've also come to some powerful realizations and realistic expectations about what this tool can do for you - which in your case was to alarm for lows when you can't feel them. It's been one of those "epiphany" experiences. :-)

It makes logical sense to have to keep giving it finger sticks, and the more finger stick readings it has the more accurate it will be. It does make sense. But damn, how hard it will be to not get spoiled by the luxury of having that number right there all the time. I think the same thing would have happened to me - I would have gotten very lazy with the finger sticks. Exactly like you said - a catch 22. And there's no way around it, catch 22 situations suck.

But, I think you've gained (and shared) a lot of insight from these last couple of days, and I know I, as I'm sure everyone else, really appreciate you sharing all of this. So, do what you gotta do for it to do what you got it for - helping you with the hypo unawareness.

3:45 PM  
Anonymous Anonymous said...

Thanks for taking us through the arc of emotions that I suspect will be a common experience with the Guardian.

I've been skeptical all along, to be honest, and am amazed at how it can cause you so much trouble (or at least appear to) yet you still think it's worth it's weight in gold. I hope that holds true for you!

In the meantime, the experience you are sharing will benefit many (and I sure as heck home Medtronic is reading)

7:52 PM  
Anonymous AmyT said...

Wow, Wil, thanks for sharing.

I am totally with you on the "hassle factor" of all this (great) new technology.

I also sympathize with the waking the baby thing. Don't do it!!

:) Amy

9:05 PM  
Blogger Erica said...

I have to tell you that your posts always keep me at the edge of my seat... I really enjoy reading your blog and your experiences with the Guardian.

6:47 AM  
Blogger Wil said...

Skytor--re: new sensor. That is a big part of it, as you'll see today. However, things have gotten even more complicated as you'll see over the next couple of days...And yes we'll be hearing from Medtronic too.

Elizabeth--thank you for your kind words. I can picture you in front of your fridge...

Scott--in an text book once I saw the function of homeostasis defined as "a dynamic state of equilibrium." That is almost pure poetry. The body keeps stable by always being in flux. Wow. God is a hell of an engineer. (I can't believe I just said that...) The human body is wonderfully complex, and our attempts to mimic its broken functions are crude at best. But you know what, Scott? You and I and everyone else in the diabetic community, we're doing pretty good on "manual" all things considered.

Anonymous--were there are some times....but I'll save the conflicting emotions subject for a post all its own. I honestly don't know if Medtronic is reading or not.

Amy and Erica--Thanks!

12:21 PM  

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