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

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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!).

Saturday, August 30, 2014

A whiter shade of pale


The head nurse regarded me carefully with her steel-blue eyes. “You’re looking rather pale,” she said, “How do you feel?”

Actually I was feeling fine, but when you’re presented with a professional assessment like that, you’re forced to do a quick inventory.

How do I feel?

Energy: Check.

Brain Power: Check.

Motivation: Check.

Best test the sense of humor.

Well, I am a white guy, I pointed out.

“There’s a difference between Caucasian white,” and she pointed a long elegant finger at me, “and Liquid Paper white. And you look like Liquid Paper more often than not these last few months. So, really, how are you doing?”

Just a few weeks ago I was asked the same question, without the pale observation, several dozen times by various members of our tribe while I was coving the AADE in Florida.

“How are you doing?” “How to you feel?” “Are you OK now?” Often followed up by, “I’ve been so worried about you.”

Really?

How sweet. Why would anyone be worried about me? Well, probably because my last post was in May, and it was a bit of a downer.

So here’s the Liquid Paper update: The last time I checked in with all of you I was running tired but still able to do all that is required of me, even though everything took me longer than it used to. Sadly, this is still true. My energy level isn’t back to what it used to be, may never recover, and I don’t feel it’s improving. In fact, I frequently feel overwhelmed by all that I have to do, by how fast the hour hands on the clock spin, and by how rapidly the calendar pages flip. It’s almost September? Seriously? How did that happen?

For most of the spring my life wasn’t much of a life. I worked and slept, ate occasionally. I did lots of drinking of course, because you can multi-task a good Malbec with almost anything. But it seemed I needed every second of every day to keep up with the minimums: My thirty hours at the clinic; my weekly column at Diabetes Mine; my monthly column at dLife; my assorted freelance gigs; and helping out with the family businesses. Plus my domestic responsibilities: Helping care for my ailing mother in law, doing the household laundry and 50% of the dishes, cooking my share of the meals, paying the bills and balancing the checkbook, and cleaning out the cat box.

And while doing what needs to be done is satisfying, and work is frequently rewarding, I was missing a key element of life. I didn’t have time for… well, I wasn’t making time for fun. (There’s never time for fun in our lives. We have to stand firm, carve out time, and defend it to the death if need be.)

But for more than half a year, I guess I was just too sick to have fun.

So I’m happy to report that I’m starting to enjoy life again. I’m making time for fun again. Sometimes it’s just little things, like watching Dr. Who on BBC American, or Sky King on DVD, with Rio. Other times it’s something more grand.

For instance, I took Rio to a pottery class this spring…




And we took in the Blue Angles over at Cannon Air Force Base…



Then got soaked to the skin…



But it was all fun. I’m also teaching Rio and to have a healthy disrespect for authority by breaking into a wind farm for a closer look…




And to have love of history by visiting a train museum…



And I’ve started making time for some photography again…



And along with a group of diabetic college professors (and their Type 3s) I’ve been studying the perfect bolus for gluten-free pizza, with dark ale, of course.

So now my goal is to have some fun with whatever extra days on the planet I’ve been granted, while still earning this T-shirt:



(It’s always best to know your limitations and not to over-shoot your ambitions.)

How am I? Well, no matter how pale my skin is, the fact that I feel good enough to make time for fun should tell you that my soul is now a darker shade of pale. And that’s a good thing. I’m starting to truly recover.

So, really, how am I?

I’m doing much better.

Thank you for asking.


Saturday, May 17, 2014

Lost


I’ve lost something.

Me.

Everyone else says they can see me. But I can’t seem to find myself.

It’s an odd sensation. There’s really nothing wrong, but nothing feels right, either. Well, yeah, I’m still running tired. I nap a lot. Even as an infant, according to my mother, I never napped. And I’m a bit forgetful. Yesterday, I drove to Santa Fe without my wallet and without enough gas to get home. But that could happen to any stressed-out, over-worked 50-year-old man.

I still seem to be able to do my work just fine. Yes, it takes me longer to write than before, but my editors assure me that the quality is unchanged. I can still look at blood sugar patterns and understand what’s going on in my patient’s bodies. I still remember all the diabetes meds, what they do, and what their dangers are. I’m still able to spot the lies and self-delusions some of my patients bring to the table. I am still able to comfort the newly diagnosed, and to inspire the old hands who have fallen off the wagon to get back on and back into the game.

So I am functioning. 

But it I feel hollow. Like an actor playing a part, instead of a real, living, breathing human being. I guess that’s it. I don’t feel that I’m alive, that I’m living.

Something is lost.

I can’t put my finger on it, but I just don’t feel… well, Me.

My joy, my zest, my inner-sparkle seems to have died with the chickenpox.


It never occurred to me that a disease could spare your body but kill your soul.


Saturday, May 03, 2014

Hostage of Ignorance


It was an odd call, to say the least. On the other end of the line was a nurse who works for my patient’s health insurance company. They were trying to decide whether or not to deny my patient’s insulin pump supplies.

Now this Patient has been on a pump for about seven years. She’s actually a type 2, but she might as well be one of us. Pre-pump she took multiple daily injections of two kinds of insulin. She’s brittle as hell. She struggles with her control. There’s a lot of variation in her BGLs, but her A1Cs generally run in the low sevens, not a bad outcome for her efforts.

Apparently the insurance company had been looking at a recent visit note. On that day, my patient had suffered a pod failure, and just like one of us, in a matter of a few hours her BGL had rocketed up, up, up to 463mg/dL. She had changed the pod, took a correction, and was waiting for the resumed flow of insulin to take effect. As a T2, her risk of DKA from a hyperglycemia this brief was nil, so her main health issue was that she was PISSED off. Madder than a wet hen, in fact.

But I guess the insurance nurse didn’t look at the most recent pump downloads that show my lady tests 6-8 times per day, that her numbers generally run between 80-250 with a good solid average of 130,  OR that less than 5% of her readings are above 250 mg/dL. Instead, the nurse at the insurance company was totally focused on this one high BLG reading, and told me they were wondering why they were paying so much money for insulin pump supplies if this was all the better the results were.

I was stunned for a moment. Everyone has a screaming high number now and again. That’s the cost of doing business with diabetes. Taking someone’s pump away isn’t likely to improve that. Probably, the opposite is true. So I pulled up the note, glanced over it, and explained to the insurance nurse that my patient had suffered a pod failure a few hours before, that’s all.

To which the nurse asked me: “What’s a pod?”

Oh. But it gets worse. It turns out this nurse knew pretty much nothing about insulin pumps of any kind. Actually, she didn’t seem to know very much about diabetes, either.

Well, at least she called to ask, rather than just getting out her red stamp pad. And, luckily, it all ended well. The nurse was polite and courteous to me, and I was able to lobby for the value of the supplies and she cleared them for shipment.

But in the course of the conversation she happened to mention she’d soon be attending her 50th reunion at her nursing school later in the month.

Let’s see…. 50 + probable student age of 20 is 70.

So a 70-plus-year-old nurse who knows nothing about pumps and diabetes is holding my patient’s supplies hostage? Not that there’s anything wrong with advanced age. Experience counts. And I plan to work well into my 90s, as I don’t have a dime saved for my retirement, but why was someone with no knowledge of pumps in a position to be making these kinds of decisions?


Sunday, April 13, 2014

Rudderless in the current


My iPod alarm goes off, playing the funky Xylophone beat that greets me every morning. Of course, it’s not morning. In point of fact, it’s three in the afternoon.

Has another hour past? I guess so. I silence the alarm with the swipe of my thumb. It’s time to test my blood sugar. Again.


I’m testing my blood sugar on the hour, every hour, during the day; and every two hours all night long. Have I lost my mind? No. I’ve lost my CGM and now I’m doing my best not to lose my life as well.


Since my CGM went offline not quite two days ago, I’ve done 34 fingersticks. By the time I get this written, edited, and posted, the teststrip body count will be higher. Do my fingers ache? Sure, but not as much as my heart does. Of course, this won’t be forever. This is emergency medicine. My salvation is coming in a FedEx truck, but it’s not coming from Dexcom, it’s coming from the kindness of a fellow patient. Is Dexcom sending anything to help? Oh, yes. More about that later, but their idea of help is perverted, to say the least.

I’m sure a lot of folks who read this will think I’m over-reacting, or being paranoid. I think not. There are some facts to consider. First, I’m as brittle as hell. My diabetes has temper tantrums that make the world’s most spoiled brat look well behaved. Despite what I think to be a better-than average understanding of all things diabetes, my quest for control is a struggle—to say the least. Mystery spikes plague me. The smallest of doses of insulin sometimes trigger epic crashes. And to top it off I don’t feel my lows. At all. I have total hypo unawareness and thus, total CGM dependence. Without this gear, it is unlikely I would be alive today to write this.

As many of you know, I was the 30th person in the USA to get CGM, and I’ve had it virtually uninterrupted since that time. Over the years I’ve become increasingly dependent on it, and have built my treatment routine around it. Brittle folks like me have unexpected responses to identical stimuli. What works one day doesn’t work the next. One day a given correction for, say a blood sugar of 250, will drive me low. The next day it has no effect at all. On a third day that same insulin acts like sugar-water and my BGL soars upwards.

I’ve learned that no amount of prior planning can help me, but that I can live in the moment with near-continuous constant adjustments. As I drift up, I layer on the insulin. As I drift downwards I slowly increase the carbs. My control is never perfect this way, but it rarely suffers extremes, either.

So for me CGM isn’t so much about continuous monitoring as it is about continuous therapy.

But without CGM, my ship is completely rudderless. Not only can’t I control my blood sugar, but because I am 100% hypo unaware, without the CGM I no longer feel safe. You can’t test often enough to detect a sudden drop you are incapable of feeling. Driving could kill me, or worse, kill someone else. Hell, sitting in my living room watching TV could kill me, too. Frightening is not a strong enough word. Terrifying is not a strong enough word. We don’t have a word strong enough. It is a flavor of fear like a dull ache that never diminishes.

I’m too damn tired from lack of sleep to take you through the whole infuriating story; let’s just say that I’m the victim of a combination of corporate greed and corporate incompetence. I did everything right, but still got screwed, and what makes me maddest is the fact that every frickin’ time I’ve talked to Dexcom they tell me a different story. They have the best product, so I guess they feel they don’t need good service. I disagree. I say they have an obligation that borders on holy. I don’t begrudge them their profits, but I sure as hell begrudge them their carless attitude with our lives.


 And they just don’t get it, any of it. On my last call to Dexcom—in the middle of the night on Friday—the tech support people were powerless to help me with the transmitter. They advised me that customer service people, apparently the only ones who “might” be able to send me a loaner transmitter to make up for their paperwork mistakes that are delaying an insurance-covered replacement, work on Saturday mornings, and to call back then. (It turns out the customer service side don’t work Saturday. I had to leave them a nasty voice mail telling them to up-the-fuck-date their website and let the people on the other end of the building know what their working hours really are). Oh, but meanwhile the tech folks will be happy to replace the sensor I was wearing when the transmitter died. They are sending it overnight by FedEx.

A sensor without a transmitter is about as useful as film without a camera, a battery without a flashlight, ink without a quill.

To me, a sensor without a transmitter is insulin without a syringe.