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

My Photo
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 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.

Friday, April 11, 2014

Fear is….

Tonight without CGM for the first time since 2005 thanks to piss-poor customer service from Dexcom and a greedy insurance company. Insurance refused to replace until transmitter low bat "warning" on Dex G4. Warning only gave 39 hours before total transmitter failure, not one week. Dex dropped the ball and did not submit paperwork for a full day. Now weekend. Both Dex and Insurance closed until Monday. Might as well be an eternity with total hypo unawareness. Hell of a reward for spending the last decade in low-paying diabetes eduction--can't even afford what I need to stay alive...

Thursday, February 13, 2014

Insulin for breakfast

I was ambushed in the hallway not ten paces from the door. I had slipped in the ambulance entrance because that’s the most likely way to get into the building and to my office without being seen. Of course, I wasn’t likely to succeed because my office faces the giant glassed-in fish bowl that’s the nurses’ station, but it was still worth a try.

As this was going to be my first day seeing patients again, I wanted a slow start. I was, well, nervous. Nervous that I’d forget something important. Nervous that I’d make a mistake. Not confident that I can function in my clinical role, once again, I have not packed lunch.

I was supposed to have half an hour to get my bearings, and do a through chart review on the two patients I was to see this morning. I normally do a brief chart review anyway, but I’d been gone so long that who knows what might have happened in my absence. Plus, I simply needed to remember who the hell these people were in the first place.

Last week, when I peered ahead at my schedule, some of the names were unfamiliar to me. I called up their records to see their faces and strangers starred back at me from their driver’s license-like mug shots on the computer. Yet below the mug shots were notes, apparently written by me, documenting visit after visit after visit after visit. Clearly these people were my patients and many of them, it appeared, I had worked with for years. But both the visits and the people themselves were missing from my memory. They were alien and the chart notes seemed like someone else’s—stirring no memories, awakening no recall.

It was worse than unnerving.

Of course, if that had happened with all the patients scheduled to see me this week, I would have left my keys and resignation on my desk and walked away. But luckily not all my patients were blank canvasses. Some were fuzzy, like distant mirages, but still in my memory. Isn’t she my Butterfinger addict? Hmmm…. Is that the one with the little dog… No, that’s her sister. Wait, isn’t she the one who stabbed her husband with a steak knife at the family reunion?

Yet still others were crystal clear. I could remember everything about them: The patterns of their blood sugars, the meds they used now, the meds we tried but failed with in the past, what motivated them, what their roadblocks are, the names of their children, their stresses and challenges.

Why some were so clear; some were so fuzzy; and others so completely absent from my mind, I have no clue.

But the slow start I was geared up for was not to be. As I made my way down the hall, one of the providers popped out of a treatment room like a spider and literally grabbed me. With a vice-grip-like hold on my bicep, she spun me around in the opposite direction of the safety of my office. “I need you to do an insulin start. Right now.” A cold chill cascaded over my body. Insulin starts are the most delicate, most difficult, most dangerous thing that I do clinically.

Normally, I relish the opportunity.

Insulin, done right, is the best weapon in our anti-diabetes armory. Insulin, done right, makes people happy and whole again. But insulin has a bad rep. It’s widely feared for no fair reason. To start insulin is more than just a, here, this is how the pen works. We have to deal with the fear factor and overcome it. Patients need to understand how it works, and how it doesn’t work. I need to ensure the starting dose is high enough to work but not too high. Bringing people down too quickly triggers relative hypoglycemia, and worse. Retinopathy “explodes” when sugars are normalized too quickly. But choose a dose too low to do any good, and patients get frustrated at taking shots without results.

Normally, I’d have a week’s worth of BGL data to study and make sure we knew the range, the curve, the shape, the lowest reading and the highest. And I’d have an hour with the patient.

This time I had no data and a time frame of only 15 minutes.

My new patient is a “visitor” from Mexico, pawned off on us by the free clinic as being too complicated for them to manage. Her sugars are screaming high. Her English is good but her husband doesn’t speak a word. He’s come along to be supportive, but she needs to provide him a running translation.

I feel like a fish out of water. A shirt without a tail. A bear out of the woods. OK. I seem to be out of good idioms.

After being introduced, I take the couple back to my office. My brain is like a car on a cold morning. I keep turning the key and it goes Wrrrrrrr….Wrrrrrrr…..Wrrrrrrr…. but never quite fires up and runs. I try to keep a calm exterior, but inside I’m freaking out.

Don’t fuck this up. Don’t fuck this up. Don’t fuck this up.

She has kind eyes, but is afraid. Dissipating that fear is job one. Assessing her further, I note that she is globally chubby, with significant truncal fat, and has heavy staining of acanthosis nigricans around her neck. Adding all of this up tells me she’s probably more insulin resistant than usual. Her starting dose needs to be adjusted accordingly. I throw my go-bag in the corner, take off my coat, and put it across the back of my chair. I motion to the pair of chairs under my new painting of the little airplane diving into the storm. Siéntese, por favor.  

Here we go again, little plane. Into the jaws of the storm we’re both destined to fly.

I sit in my chair and open my rat’s nest drawer. My approach to drawers is to simply let them fill up until you can’t cram another thing into them, or until you have to move your office. Over the last eight years, I’ve found myself moving offices more often than cleaning drawers.

I rummage around for a minute, and then get out a saline training pen and a few pen needles and lay them on my desktop. Something is missing. There should be more stuff. Think. Think, damn it!

I don’t have a clock in my office, but I swear I hear one ticking.

Like a swarm of gnats, snippets of thoughts buzz around in my head. Bzzzz...…site rotation…titration…air shot…bzzzz…needle sheath…plunger…hold time…hypo warning…bzzzz…sharps disposal…BG temp…bzzzz...bzzzz...bzzzz...bzzzz...

I can’t really grasp one complete thought. They are all in motion, all fragmentary, a blizzard of fragmentary sticky notes that are not yet a speech. They are all the things I need to tell her but I can’t figure out where to start and how to weave the thoughts together. In the past the various elements just flow through my mind, mouth, and hands. Normally, when it comes to insulin starts, I’m graceful.

Today is the mental equivalent of the first time I wore ice skates.

Um… sorry if I seem a little distracted. I’ve been out for a time and I’m just back on the job…

I don’t know how it went. To me it seemed awkward. Rushed. But I don’t think I did anything wrong and Bill Clinton didn’t interrupt the process. I guess I’ll know how I did at her follow up in two weeks time. Or sooner if I fucked up.

As the day wears on, we have two new diagnoses that I don’t think I handled as well as I should have. I also see some old patients. I’m able to download their meters with little difficulty, but the swirling patterns of dots and lines aren’t whispering to me in their secret language. I’m not seeing the mystic ebb and flow of insulin and sugar that normally appears to me like heat applied to messages written in invisible ink.

The pain in my gut rises and falls like the tide, but as the short day wears on I find that more and more, the fog in my mind is beginning to lift.

My last patient is a pumper on a CGM. I plug her Dex 4 into my laptop and the computer sucks the data out of the device like an electronic vampire. I turn the screen to share it with the patient and an advanced nurse practitioner student who has been assigned to me for the back half of the day to begin to learn all things diabetes. I warned her she was being led by a blind man.

“Wow,” says my student.

“Augh,” says my patient.

I don’t say anything. The tangled mass of colored trace lines on the computer screen looks like the cat has gotten into grandma’s yarn collection. I can’t make sense of it, but fell I should be able to. I wrote the book on CGM, fer God’s sake. Literally.

The silence stretchs on. Uncomfortably so.

Finally, my student clears her throat, “Uh… What am I’m looking at?” she asks.

I snort. I have no fucking idea. It’s the truth, but probably not the best teaching method. My patient giggles. They love it when I swear. OK, I tell my student, this is an X-Y graph. We are looking at time left to right and the level of the blood sugar vertically. The device checks the glucose level in the interstical fluid every five minutes. Each test has a mark. The trail of marks is called a trace. I run my finger along the computer screen to show her. The marks change color every day and we can… we can… Suddenly, I see it. My finger freezes. Wait a minute.

Well, what do we have here? Hidden in the forest, I suddenly spot a grove of trees. Amongst the chaos, a pattern is emerging.


My brain restarts.

Nearly hidden by wide variation during her sleeping hours, and the insane tangle of variety that follows her breakfast, her blood sugar traces show a pre-dawn rise. Every day. In a flash I know she needs more basal insulin an hour upstream. I smile, This we can fix.

Tomorrow I’ll pack lunch.

Monday, February 10, 2014

Jumper on the ledge

I can’t believe I just taxied right off the fucking runway. One moment I’m headed for the terminal, the next moment we’re off in the grass, my landing gear is mired in the mud, and the plane is stuck fast. I shake my head. How did that happen? Did I pass out? Get distracted? Did the steering fail? Fuck! I advance the twin throttles. Both radial engines spool up with a throaty roar, the airframe vibrates, but we do not move. I throttle back before I shake the silver beauty to pieces. Then I advance just the left throttle. The left engine snarls to life, the plane shakes and groans, but again we do not move. I yank the throttle back to idle. Shit! I sit for a moment, exhale, collect my thoughts, then I key the mike and call the tower. Uh, november triple four six kilo, I, uh, have a little problem here…

Sunlight filters in the window between the slats of the blinds and across my bed, waking me. Crap. I need to call the FAA this morning and explain to them how I taxied off the runway at an unauthorized spot yesterday and got stuck in the mud. Hell of a way to start the day.

I swing my feet to the floor and my eyes fall on the glucometer on my nightstand.

Oh. Wait. I’m not a commercial pilot anymore. It was a dream. Or… or… is the diabetes a dream? As cobwebs dance across my mind, I try to sort it all out. The gleaming plane stuck in the mud seems so real. The world of diabetes and illness seems like a fuzzy, distant dream… and yet… and yet I think what feels real is the dream and what feels like a dream is real. How can that be?

I rub my eyes and see my clothes and stethoscope laid out on the Victorian chair in the corner of the bedroom. Then I remember. I’ve been sick. Very sick. And today I must go back to work. Not at the airport, but at the clinic. The sliver plane off the runway in the mud, so real moments ago, fades as the reality of diabetes and chickenpox crowd in. Silver planes are dreams. Reality is desperate times and desperate people. Sickness and poverty and fights with insurance companies. I have been commanded to return to this reality: It is time. You must return. You must come back to work.

But I do not want to go back to work. I do not feel fit for duty in mind, body, or spirit. But the powers that be are insistent, and my boss—the most brilliant clinician I know—feels that exercising my brain in its old patterns might be just what it takes to get it to start working again. The neurological equivalent of jump-starting a car.

I am so unconvinced that I do not even pack lunch.

Now on the one hand, I’m not terribly sick anymore. I’m no longer contagious. Most of the scabs have fallen off. I’m able to stay awake for most of the day. But on the other hand, I’m not terribly well, either. My mind still does not feel right, and the pain in my gut remains omnipresent—sometimes worse, sometimes better. I feel a mere shadow of my former self. Perhaps the shape is the same, but there’s no contour, no depth. I believe this disease should have killed me but someone dropped the ball. Probably, just like UPS and FedEx, who can never seem to find my house, the Grim Reaper got lost en route. Now I’m in limbo like a lost package that no one knows what to do with. Do we forward this onward or return it to the sender?

I’ve been asked to come into the clinic in the middle of the day and to stay only as long as I feel up to it. I have no patients on the docket. I’m just to catch up on phone messages, emails, and get familiar with the new version of our electronic medical record that was installed in my absence. Without my normal mental powers at my command, I am unable to conjure up an excuse not to comply with the request. But I dearly wish I could.

The sun high in the sky, I drink a cup of coffee and eat a Kind bar. Then I pack a pipe with Black Cavendish, put on my grey wool coat, pull my dusty go-bag off its hook by the door, and step outside.

Climbing back into my jeep after more than a month feels surprisingly “right.” Sort of like putting on a comfortable old pair of shoes. Still, on the drive over to the clinic I can’t shake the feeling that I’m going to my own execution. I don’t want to be doing this. Along with the nagging pressure/pain in my gut, I now have butterflies in my stomach. The devil on my shoulder whispers in my ear: Just drop into the median, do a U-Turn, and turn tail for home. Tell them you tried, but just couldn’t make it. They’ll never know.

Like a jumper on a ledge, I want to, but for some reason I do not. I forge onward.

The day is sunny and bright. Normally the kind of day that’s full of promise. The hour’s commute seems to take forever, but in a good way. After all, I’m in no hurry to get where I’m going.

It has been one month to the day since I last worked. Most of the four weeks off is a fog of sweat-drenched nights, nightmares, ER visits, fear, fatigue, and confusion.

Not exactly a vacation.

I park at the edge of the main parking lot instead of “up back” where employees are supposed to park. I can barely walk and I want to conserve my energy for the day. As I make my way stiffly down the hall to my office, my brain seems mired in molasses. Everything is familiar and yet nothing looks quite right.

My office door is closed tight. I usually leave it open. In my imagination, I briefly envision yellow-and-black crime scene tape sealing it off. I shake off the image and push the door open. The energy-saving motion detector wakes up and turns on the lights for me. I drop my go-bag and car keys on my desk, and as I turn to close the door, I see it.

Something new is waiting for me.

My wall is no longer a sterile blank canvas. It is graced with a painting and a note from my beloved. At some point while I was away, my wife snuck in and hung a painting on the wall. It’s a big painting of a small airplane being engulfed by a fearsome cloud—a wicked swirling blue-grey vortex.

It’s an oddly sinister painting. But I love it at once.

Why? Because the plane is in the sky—where planes belong. It’s not broken down, out of fuel, grounded by fog, or stuck in the mud like the planes that have haunted my chickenpox nightmares for weeks on end. Clearly, this little plane is about to encounter an epic challenge, but it’s flying boldly forward.

I realize at once that this plane and I have a lot in common. Like it, a storm surrounds me and I must fly through it or I must crash in the attempt. I’m not ready for the challenges ahead, but I mentally advance the throttle, bank towards the storm, and fly in.

The first hour is spent getting (slightly painful) welcome-back hugs from my various colleagues.

The second hour is spent trying to get my fucking computer working. We have three different passwords between turning on the stupid laptop and reaching the damn electronic medical record. Each password has to be at least 12 characters in length. Each password has to have at least one capital letter, at least one lower case letter, at least one number, and at least one special character. The same password cannot be used twice, each password expires every three months, and cannot be reused.

I cannot remember any of them.

I sit in front of the blank computer screen and tell myself that even without encephalitis, even without sleep deprivation, even without the wicked cognitive side effects of powerful antivirals, I likely had problems logging in every day.

I tell myself that, but I am not convinced.

The third hour is spent trying to figure out how to do the most basic of operations on the new medical record software that looks nothing like the old. Or maybe it does look like the old and I just don’t remember. Again I find the dream world and the real world converging on me and I’m not sure what is changed versus what I’ve lost. I glance outside my office door, but there’s no sign of Bill Clinton.

The pain in my gut gets worse. A giant knot. I don’t know if it’s the chickenpox damage, the swollen lymph nodes, or just garden-variety fear and stress. Maybe all of the above, but I find myself doubled over at my desk, unable to sit up straight.

One of my nurses pokes her head in the door, “You don’t look so great, you doing OK?”

I’ll live, I reassure her. In fact, at that moment, I wasn’t sure I wanted to.

The fourth hour is spent weeding through month-old voice mails and hoping that most of the people who left me messages have since contacted someone else at the clinic. Three weeks ago, for instance, there was a message from one of my patients: “Please call me right away, I only have one day of insulin left!”

I have 193 emails. Fuck that. Enough is enough. I’m going home.

I’m exhausted. Everything today was a struggle. Even the littlest things took the longest time to accomplish, and still didn’t feel right. It felt more like the first day on the job, not the 2,500th that it really was.

But I made it through the day.

I shut down the computer and looked up at my new painting of the little plane approaching the big vortex. I don’t know if my mind will ever work right again—but somehow this plane flying into the storm gives me hope. It will be a long road, no—a long flight—to recovery. But at least today I’m off the ground.

And now that I’m back “in the sky” again, I wonder if the dreams of broken-down, stranded, and grounded planes will fly away.

Maybe tonight my dreams will take wing.