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!).

Sunday, April 15, 2007

Sleeping with my new mistress

It is the biggest fear of all proto-pumpers. Not the insertion needles. Not the lack of long-acting insulin and the corresponding short cut to a DKA coma if the pump craps out. Not the fact you must test, test, test, test until your finger tips are a constellation of tiny black dots.

No the big fear is: how the hell do I sleep with this thing? When I was on the path to pumping I asked around the Insulin Pumpers Board, “How do you wear your pump at night.” The most common answer was, just throw it in and dive in after it.

That always sounded crazy to me. For a long time I’d clip the pump to my sleep shirt. When I got the girl I put her on the night stand, but lost telemetry too many times. In the end I clipped the two belt clips together, tossed the pair of them into the bed and let the infusion hose pull me in. Sort of like a crab fisherman being snatched off the deck when a rope catches his foot. Only with a better ending.

I frequently end up in the morning with the hose wrapped around my body, my arms pinned. Held prisoner by hostile Indians. Insulians? Hehehe.

So after the sad Valentine’s day break-up with the girl, I was just sleeping with the pump. Where is my wife, you ask?

Well, I’m embarrassed to admit it, but a while back she left me for another man. Hard to blame her, her new guy is handsome, smart, funny and charming. He’s also five-years-old and my son. I never know where I will find my two night-owls when I get up for work in the morning. Sometimes asleep on the couch, Pink Panther DVD still running. Other times in his room. Sometimes in the back bedroom.

After several months of this nonsense I tried to explain to Rio that in the normal course of events a child’s mother sleeps with the child’s father. He gave me that my-poor-father-is-deluded-and-must-be-suffering-from-low-blood-sugar look.

The next day he came to me and said, “You can have Mommy back when I grow up and get a wife of my own,” then he hesitate and added, “of course, you’ll be dead by then”

So as I’m getting ready to go to bed all by my self on the first night with my new system, it happens. For the first time since I hooked up, the ParaPump unexpectedly speaks to me.

Be, bee, beee, beeee. Soft. Like a gentle breeze. Four soft, short, musical tones. Each one an octave above the previous. Like a child’s music box, but the entire stanza less than two seconds. Then nothing for a full minute. Then the whisper of music repeats, be, bee, beee, beeee. You gotta be kidding me. That’s an alarm?

I miss the Nazis-bombing-London-air-raid-siren racket of my Guardian. Now that was a noise that got your attention. And it was loud. I wonder if this gentle music will wake me up? I’m guessing that the ParaPump will have a similarly disappointing low alarm noise. The crew at the clinic learned to recognize the distinctive cork-screwing low alarm and air-raid high alarms of the Girl. At a low nurses would coming running with juice, and a high my colleagues would point fingers and tease me, “what did you eat this time?”

I know from my homework that there is a backup alarm. I don’t respond to my first high alarm to see what the backup siren will sound like. I get the two seconds of music every minute and then, ten minutes into the game, it goes off: wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea. It is much louder, but still not as loud as the original. But it does go on for a nice length of time. 15 or 20 seconds. Presumably it would repeat, but I go ahead and silence it.

Ten minutes before the loud alarm. Ten minutes is an eternity during a nighttime hypo. How far would my sugar drop in ten minutes if a fast-moving hypo hit? The dreaded hypolanche (named for an avalanche). I’d be a hell of a lot happier with four normal alarms and then throw in the big guns. Or better still, a progressive alarm, each louder and longer than the one before it.

Did I read the ParaPump will also vibrate as backup? Or does it make noise if it is set to vibrate and that doesn’t do the trick? I don’t recall.

This is a big disappointment. Guardian could both make noise and vibrate, and it was a good thing too. Sometimes in a noisy place I wouldn’t hear her, but I could feel her. On the flip side, sleeping, sometimes I wouldn’t feel the vibe, but I’d sure as heck hear her. This rotten ParaPump is making me choose. Vibrate or Noise. Noise or Vibrate. I can not have my cake and eat it too.

While I’m griping, I’m also disappointed that the BG graphs can’t be used as home screens. I discovered today that they timeout, not as fast as other screens, but in about 30 seconds. I had envisioned being able to leave the graph on so I could glace at it and see where I’m at. Granted, it is only one button to press, but….well damn.

Speaking of Graphs, they are not as useful yet as I had hoped. The 24 hour screen is just too small to be useful, and the three hour always looks like a flat line. Your sugar really has to surge or plummet to show at all, given the horizontal vs. vertical displacement of the graph. My entire “between the lines” range of 75 to 200 is only a quarter of an inch on the screen. Still better than no graph at all, but we only get 3 hour or 24 hour. What about six, or eight, or ten, or twelve?

Anyway, it is late, and morning is earlier than I want to think about. I toss the new ParaPump into bed and dive in after it. I’m paranoid about the alarm volume, so I pull the pump up under my chin, to be closer to my ears. It takes me a minute to realize it: I’m lying on the transmitter. I’m on my side, the transmitter is buried in my mattress and it doesn’t hurt! The old Guardian transmitter was so big that if I rolled over on it at night it would often wake me up. If it didn’t, the lost signal alarm would.

Wow. This is a lot more comfortable. How strong will the signal be? Worrying, I find my self turning on the night light every couple of minutes for the next fifteen minutes, each time greeted by the little un-lit Olympic torch icon that tells you the signal between the ParaPump and the Seashell is strong. Reassured, I drift into sleep…..

Three A.M…..

Wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea-wee-wea.

What the fuck? What’s that? Through the fog of exhausted sleep my brain is trying to grasp what is going on. What is this new noise? Where the hell am I? Ummmm….wait a sec….Who the hell am I? Then like a slow motion reverse film of a vase of water un-breaking and reassembling its self, the pieces of my life start coming back together, sorting out the dream world from the real one.

I fumble for the source of the noise, find the infusion set hosing, and reel in the ParaPump. Fingers fumble over unfamiliar buttons to turn off the alarm.

A low. I sit up and turn on the red-lens mini flash light that lives on my night stand. I take a finger stick. 88. I had ParaPump set at 85. They are pretty close. I hit ESC to bring up the three hour screen. A slow, gentle descending arc is displayed. I look for the IOB screen to see if there is any insulin left in play in my body, and then remember: that was CoZmo. No quick and easy way to determine your Insulin On Board with the ParaPump. I squint at the ceiling, where my cool Christmas present clock from Rio’s baby sitter projects the time and out door temp. A little after 3am and damn cold outside. No chance of left-over bolus insulin causing trouble tonight.

Then it dawns on me. I was woken up not by Be, bee, beee, beeee. But by Wee-wea-wee-wea-wee-wea-wee. I slept right through the dainty low alarm. All ten of them. It was the backup siren that woke me up. I wipe the sleep goop from my eyes and check the alarm history. Yeah. Shit. The Low alarm is shown to have gone off ten minutes before. Lucky for me I was just skating on thin ice, not really falling though into the icy waters of a real hypo below.

Why the sam-hell don’t we have a volume control on this thing??? Why can’t we have both noise and vibe? I wave of depression washes over me. Six weeks of stress with no CGM coverage and now I’ve got it again, and it doesn’t do the job well. But then, sitting on the edge of my bed in the red glow of my flashlight, bare feet getting cold on the floor, I reconsider.

On the first night on the job, ParaPump has done what she was designed to do: Watch,
Detect, Warn. And we are just getting to know each other. So much to explore with a new relationship. And one other thing I can tell you, from just one day, I LOVE just having one box on my belt. It is liberating and wonderful. Pump and Guardian together. The pump is different, I need to get use to it. I’m sure there will be things I hate and things I love, but having everything you need in one box…and a smaller box than either of the old boxes….well, that’s just…

Well, that requires some sort of adjective that the brain cannot summon at a bit after three in the morning. I turn off my red flashlight, slip my ice cold feet back under the covers and snuggle up with my new mistress.

4 Comments:

Anonymous Jana said...

I'm sure you've figured this out already, since you're a smart guy, but the way I check my IOB on the ParaPump is to go through the Bolus Wiz with zero carbs (and without entering in a BS, unless I've just tested) and see what it has on the screen for "active insulin". It does take a few button-pushes, but at least it's something.

10:43 PM  
Anonymous Anonymous said...

Hi Wil,

I sleep through my alarms constantly, usually only waking when the thing starts to vibrate. I have started sleeping with it clipped to the neckline of my shirt, and this seems to help wake me up about 10 minutes in. Once (with a high alarm) It took 3 hours to wake me because it was buried under the covers. I set my low alarm higher at night (98) so that I will have the extra time if I need it. It is really not loud enough, as I have not heard it while driving in the car with the radio on or sitting at the movies.
But I do love it, it is keeping me sane for the moment. I have not used the Cozmo so I can't compare, but room for improvement is there.
I have only been using it for about one month and I feel so much safer.
One other note, a few times when I had it on my upper stomach, it would show I was dropping like a rock when I laid on it or had my arms crossed. I thought that was weird, but as soon as I moved it came back in range pretty quick. It also seems to have a small tolerance for range. My 'buddies' like to be very close to each other.
I'll keep checking in, thanks for updating.

6:39 AM  
Blogger Scott K. Johnson said...

Great post Wil!

9:06 AM  
Anonymous Aaron said...

Hi Wil,

I often sleep through the alarms as well. Sometines though, they wake up my wife and see wakes me up.

The low blood sugar alarm is configurable (from 5 mintues to 1 hour by 5 minute interevals).

I like your discussion about where your wife is; I have similar problem except in reverse. In addition to the two of us, there is also our almost-two year old in the bed (and we are occasionally joined by an 11 year-old).

10:04 AM  

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