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!).

Thursday, May 27, 2010

More stormy seas

No booze. No caffeine. No smoking. And of course, sex is out of the question.

So this is what hell must be like.

OK, so were to start? Or more correctly, where to continue? I guess we’ll pick up our story with the ER Doc, who came back it to my cubical an hour and a half after the MRI with a big grin on his face, waving a radiology report over his head, “The good news is that nothing is bad enough to justify operating on your back!”

Lovely. And the bad news?

So it turns out I have “degenerative disc disease” plus some arthritis. Mostly typical upper-middle-age stuff. One bulging disc too. No evidence that any nerves are being impinged on. But five of the six lower spine discs are involved, and virtually all the bones. The ER Doc thinks that this is a case of lots of little things adding up to a lot of pain.

He views the problem as actually two problems. First, we need to knock down this acute flare up. Second, there will need to be an ongoing treatment plan for the chronic problems. The second phase will need to be addressed by my PCP, but his opinion is that continued daily use of flexeril, continued daily use of the TENS unit, some physical therapy, and avoiding stress will take care of me most of the time. Well, I can manage three of the four.

He assumes a flare up or two per year requiring more aggressive intervention will be likely. (My PCP later agreed to this plan with the added—as she is in the loop on the problems with the Human Tumor— “Why don’t they fire that fucking bitch? Don’t they know how much you’ve done for the diabetics over there?)

But back to the ER, fixing the current inflammation is apparently going to be the hard part.

“I wish you weren’t diabetic,” says the ER Doc. “I’ve you weren’t I’d use a steroid.”

If you don’t already know, steroids are notorious for wildly elevating blood sugar, even among non-diabetics. I tell the Doc I know exactly what steroids do to my kind, but that I’m not a run-of-the-mill diabetic. I’m a Super-betic with a CGM, a pump, and a vast reservoir of knowledge and resources.

Let’s do this, I say.

Please recall at this point I look more like a homeless drug addict than a Super-betic.

He regards me for a long time with an unblinking stare. I feel he’s weighing the evidence. What his eyes and ears behold must be quite at odds.

At last he sighs, “Let’s do this.”

I’m given prescriptions, a CD of the MRI pics of my back, and am discharged just in time to get to my pharmacy fifteen minutes after they have closed. In addition to the steroid, I’m given an NSAID medication for pain an additional anti-inflammatory action.

I head for the nearest Walgreens drive-though so I don’t have to get out of my car. Of course, the wind snatches my insurance card out of the tray under the bullet proof glass. No shit, this is the second time this has happened to me at a Walgreens.

Then, the day almost over, I get to head home.

But recall that I am CGMless, and I know where there is a spare sensor. In my office at the clinic. It is late on Saturday afternoon when I arrive in the empty parking lot, we’re closed on weekends.

I park right by the back door. Spend fifteen painful minutes getting out of my car, then unlock the clinic door. The pre-alarm sounds and I carefully punch in my alarm code, being careful not to enter my ATM card code like last time.

The place is eerily quiet. My office door has been closed and being postage-stamp sized and full of computers, is staggeringly hot. It is like I have stepped into the Sahara.

I expect it to feel welcoming, like a hug from a loved one. But it is surprisingly sterile. Things have changed, it no longer feels like home.

Out of habit, I throw my keys on top of my desk.

My phone is blinking messages waiting. I know there must be a million emails. But I have strength for neither. There is a strange FedEx box, which turns out to be a new Bayer Contour USB meter. Cool. A new toy to play with and review here.

I get the sensor, tuck the FedEx box under my arm, and head out.

I enter the alarm code and slip out of the building. When I get to my locked car I set the boxes on the hood and start padding my pockets for my car keys. What follows is an increasingly panicked key search Macarena dance.

Then, clear as day, in my mind’s eye, I can see my keys still sitting on my desk. I have locked them in the deserted clinic.

I am locked out.

I am also locked out of my car, which has my go-bag, cell phone, PDA, and my blood glucose meter.

Fuck. Double fuck. Triple fuck. Now what?

I have only the vaguest idea of where my various local co-workers live, and no clue who might be home. And I’m not in much shape to walk, either.

After standing in the hot sun for fifteen minutes trying to jump-start my brain, it finally occurs to me to walk over to the ambulance building, which is manned 24-hours a day, is about 50 yards from me, and is owned and operated by my clinic.

I hope to hell they are not out on a “run.”

I pound on the door. In a couple of minutes an impossibly young looking EMT opens the door. Remember that I still look like a homeless drug addict, and an now in a desperate state of mind.

Hi. Ummmm… I’m not sure we’ve met, I work over at the clinic… and…

The kid brightens up, “Oh, I recognize you sir. We’ve only met once. You run the diabetes program.”

So I give him the reader’s digest version of my day and my predicament. But he has no keys, no employee phone list. But he does have phones, internet, and the local phone book.

First I call Deb. Our land line is down. Something to do with a late bill. Her cell phone has lost signal. I can’t reach her.

None of my associates appear in the local phone book or on the internet.

It does not occur to me until I’m actually writing this that our ambulance service is on our same servers and I could have accessed the internal documents drive that has all the papers, forms, manuals, and the master employee home-phone list.

After 25 futile minutes, I decide to tear my wallet apart.

As it so happens I have the business card for one of our Docs. I call his mobile and he answers right away, I had just intended to ask him for the numbers of some of the support staff who live nearby but he makes the mistake of casually asking how I am.

It all gushes out. I must have sounded like a maniac.

“I’ll tell you what, I’ll just drive over and let you in,” he says, concern in his voice.

Oh, uh, I don’t want to bother you, I know you live about 15 miles away.

“No problem,” he reassures me, “I have paper work I need to work on either today or tomorrow anyway, this makes the decision easy for me.”

So 20 minutes later I have my keys in my hand again, and after a brief interrogation, he is satisfied that the ER Doc has launched an appropriate course of action.

So, finally, at long last, I arrive home. And can take my new meds. The steroid had the expected effects on two fronts. In one hour my blood sugar went from 96 mg/dL to 552. And within three hours I could move without excruciating pain for the first time in days.

But steroids have another side effect too, as I learned reading the documents sent home with me from the hospital and pharmacy. They have a tendency to wipe out your immune system.

Avoid being near people who are sick or have infections. Call your doctor for preventive treatment is you are exposed to chicken pox or measles. These conditions can be serious or even fatal in people who are using steroid medication. Lovely.

And a reminder: Type-1 Diabetes is an autoimmune disorder. We have pretty crappy immune systems to start with.

The other drug, the NSAID, is contraindicated with three other meds I already take. And I’m also told:

This medicine can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use the medication. Double lovely.

And a reminder: heart attacks kill most diabetics.

And of course this mix of meds also requires no booze, no caffeine, and no smoking. Even so, it beats the hell out of the back pain.

Well, it is Saturday night, and I have an appointment with my PCP on Monday at the crack of dawn. I doubt these drugs will kill me between now and then. I’m supposed to return to work the next day, on Tuesday. But my work place is infection-city. We always joke it would be a nice place to work if all these sick people would stop coming in. I email my clinical boss and decide that if either he or my PCP think it is a bad idea, immune system wise, for me to return to work I will not. If they both give me the green light I’ll return as planned.

Of course I’m still not really ready to face the Human Tumor again, but so many people are urging me to return . . . I have to at least try.

So, being honest with myself, I don’t know if I am really afraid of getting horribly ill while my crappy immune system is compromised, or if I’m just grasping at an excuse to avoid returning to a situation that I view as fundamentally unchanged.

I don’t think the other person in this dance has changed her attitude at all, nor is she likely too. All I can change is my attitude. My approach. And I haven’t really figured out how to do that out yet.

One of my very good friends called today and gave me a useful tool to try. She told me, pretend for the moment that you work at the State Hospital (God forbid). You go in to see a schizophrenic patient. The patient goes bonkers and throws a chair at you. Would you take that personally? Hell no, this is a crazy person. The crazy person threw a chair at you because her mind is a mess. Same with the Human Tumor. She throws crap at you because she’s crazy and you can’t take it personally. Just picture her in a straightjacket, and you’ll be fine.

Hmmmmmmmm… I really like that image of the Human Tumor in a straight jacket. She likes to wear a long white “doctor’s” coat (as is her prerogative, as a licensed provider). It wouldn’t take too much imagination to convert it to a straightjacket in my mind’s eye.

I had generally been trying to image pianos and anvils falling on her head, but all around, I think the straight jacket image is healthier and more productive.

At any rate, my medical boss was away at a conference and never weighed in, but on Monday my PCP was adamant that I not return just yet. She would have preferred I stay quarantined until ten days after I stop the meds. She faxed a note to my clinic, but having already been gone two weeks, I’m not sure if I have any sick leave privileges left. She gave two dates, a further down the road “preferred date” and a minimum safe return date. We’ll see what happens.

Both about my return date and what happens next, when I do return . . .

Wednesday, May 26, 2010

Don’t go fishing in a perfect storm

The time to hesitate is through
No time to wallow in the mire
Try now we can only lose

With an efficient wirrrrrrrrrrrrrrrrrring sound I’m raised towards the ceiling. With a gentle chunk! The platform stops.

And our love become a funeral pyre

Wirrrrrrrrrrrrrrrrrrrrrrrrrrrrrr, now I’m moving backwards, head first, into the crypt-like tube. A blue line appears on the tube’s ceiling, so close I expect my nose to touch the smooth white sci-fi metal.

Come on baby, light my fire

The edge of the tube pushes my arms gently towards my body. I had reassured the tech that I didn’t suffer claustrophobia. I close my eyes, fingering the panic button, and let my mind disappear into the music. Jim Morrison of the Doors flows into my headset. In hindsight, I should have asked for R.E.M. because R.E.M. in an MRI would have made a great post title. But the Doors CD was already in the player, and it sounded like a good choice.

Come on baby, light my fire
Try to set the night on fire, yeah

I’m to lie still for 15 minutes. Am I breathing to heavily? Is that a leg cramp coming on? Damn.

Girl, we couldn't get much higher
Come on baby, light my fire
Come on baby, light my fire

Other noises filter through the music. A sound like a truck backing up: Beep! Beep! Beep! Beep! Heavy thumping noises: Thunk! Thunk! Thunk! And then the tube starts to vibrate. Under my back the table starts to get hot, while icy cold air blows in my eyes, a vent right above the bridge of my noise. I close my eyes again and disappear into the music.

Try to set the night on fire
Try to set the night on fire . . .

. . . it all started 12 hours earlier . . .

I’m lying on my right side in bed. The problem is, that wasn’t the plan. The plan was to sit up in bed and read for a little while on my Kindle. I’m nearly through with Robert J. Sawyer’s Rollback, and it’s pretty damn exciting. But I am unable to move. At all. Even the slightest shift of my leg shoots blinding lightning bolts of pain throughout my back. Breathtaking pain. Pain so bad you think you will pass out, pain so bad that you wish you’d pass out.

This is not good.

I crank up the TENS unit. Beyond the tattoo-parlor pain setting. Beyond the pissed-off porcupine setting. Beyond the burn-your-self with a blowtorch setting. Beyond the pass a gallstone setting. All the way to the max. Yes, I’m now quite sure that electrocution is verifiably a cruel and unusual punishment.

But even totally maxed out, the TENS unit cannot overwhelm this pain.

The problem in my back has clearly gone to a new level. But a Friday night is not the time to go to an Emergency Room.

I don’t have the writing skill to relay to you what my night was like. Words fail me. The slightest twist or turn, a breath slightly too deep—all of these send my lower back into rolling spasms. I can feel the muscles seize up, a monster’s grip. My body screams and shakes, possessed by pain demons.

And then, at six in the morning, a have to pee.

But I cannot get out of bed. I can’t roll, I can’t scoot. This is not good for the home team.

After an hour of quarter-inch-by-quarter-inch struggle I finally leverage myself to the edge of the bed where I can tumble off and crawl to the bathroom, my bed sheets only wet from sweat.

Finally, vertical, I know what to do. I need to head to the hospital. I look in the mirror and behold a frightful sight. Having been stuck at home and having electrical pads taped to my body, I have neglected myself for three days. I wear my beard closely cropped to my jaw, but now thick stubble covers my cheeks and neck. My hair, overdue for a haircut, is long, stringy, oily. My skin is pale, pasty. A ghastly, ghostly white. My eyes are blood shot.


I spray my body with Axe leather scent, to mask whatever I must smell like and go find the only clean shirt I have: a black banded collar. It makes my face even paler.

Double fuck.

I leave a note for Deb, who’s still sleeping. I think once I get into the car, I will be able to drive it. I don’t want her and the little one having to spend all day in the hospital. If they dope me up too much to drive back, I’ll call for a rescue. Then I take my father’s walker to help me get out of the car on the other end, and head out into dawn’s early light.

The drive down our rocky road, even at two miles per hour is torture. Every jolt makes me gasp. Finally, on the smooth pavement of Interstate-25, things improve.

I head to Santa Fe, about 75 miles from home rather than the closer Las Vegas hospital, which is 24 miles away. If you are bleeding, I always say, the closest ER is the best one. Otherwise you can choose based on reputation and experience.

On the road over it occurred to me that I’m going to walk into a northern New Mexico ER and complain of back pain. Now, what you need to understand, is that we have a problem with prescription narcotics in this part of the world. Some folks are addicted to them while others go to great lengths to acquire them to sell to the folks that are addicted. We politely call these drug dealers “diverters.” In both cases the best way to get prescription narcotics is to convince a doctor, or an ER, that you have horrible back pain. Back pain can be hard to get to the bottom of, so it’s a great choice for pill-seekers.

And sure enough, even though the sun has just come up, a new shift has come on, and I’m the only one in the waiting room, I’m put on ice a loooooooooooooong time before they bring me in.

The triage nurse is ummmmmmmm, less than friendly, even rolling her eyes when I tell her why I’m there. She moves me several times from various rooms, presumably to evaluate how well I could, or could not, move. If I could move at my usual speed, I’d choke her.

On the bright side, a upper-middle aged Doc comes in within a few minutes. I’m his first encounter of the day and he’s in a chatty mood. I’m able to overcome my appearance with my oratory skills.

And he decides to start with the MRI. “It shouldn’t take long at this time of day,” he says reassuringly.

Well, I don’t know how long it normally takes, but I sat for the next two and a half hours. Finally a young man with a wheel chair shows up to take me to the MRI lab.

At this point you’d be forgiven for thinking our story had come full circle, but not quite yet. You see there is still the CGM problem.

Right now I’m wearing a Dexcom 7+ System. The previous sensor crapped out on me in about 14 hours. All CGM sensors have problems from time to time, but for the most part I’ve had very little trouble over the last few months. Clearly, Dex has the problems that were plaguing their production during their growth spurt straightened out.

What made this a more-than-average hassle for me was that this was my second-to-the last sensor and my #%$^&#$$@ insurance won’t send me the next 90-day supply until I’m actually on my last sensor. I have no spare.

Now, Dex will replace the “bad” one for me, but I won’t see that one until Tuesday. If I pull the last sensor out of my arm I’ll be unprotected for three full days. That’s a hell of a long time for the hypo unaware. Too long.

I’ve disconnected my Cozmo, setting it for the max away-from-body time of two hours. It will track the basal I lose while I’m off getting pictures of my insides taken. When I hook back up, it will deliver the lost insulin. I also leave the Dexcom receiver behind. Along with my rings, which I had to pry off my swollen fingers with the help of hand lotion, my watch, my medic alert, and my shirt.

They are making me wear one of those awful hospital gowns that is two sizes too small, opens in the back, and is missing the ties to close it. Well, I guess that’s the service you get when you are a drug seeker.

I leave the CGM sensor and transmitter in for the time being. On arriving at the MRI lab I discuss it with the tech, who has never heard of CGM and can’t find any in his master book of all things medical. I manage to pull off the transmitter, which appears mainly plastic on the outside, but who knows on the inside. Pulling a Dex transmitter off one-handed, while leaving the sensor in place is quite a trick. You have to pull both “arms” away from the transmitter at the same time, while lifting it upwards. Even a well-trained octopus would have trouble doing it.

All that is left is the tape, plastic, and very small coil-like wire inside my arm. I’ve explained to the tech why I’m reluctant to pull it out. But he’s reluctant to put me in the machine with it on. Apparently the risk is I could get a helluva burn if the metal in the sensor is the kind that is attracted to magnets.


I had always thought the machine would just rip it out of your body.

But a burn… subcutaneous…

I pull the damn sensor.

To his credit, he then takes the day-and-a-half old sensor into the MRI bay to see if it will stick to the magnet. Nope. “Well, I guess you could have left it in after all,” he tells me.

Well, better safe than sorry.

“At least if you need another MRI you’ll know it’s OK,” he says, “and I’ll know the next time a diabetic comes in with one of these.”

And then he wheels me into a space-station looking room with a giant thick metal doughnut, the MRI. With great difficulty and excruciating pain I’m able to get out of the wheel chair, and with his help, onto the table. I’m left gasping for breath, my legs still askew.

“Here, let me help you,” he says helpfully, grabbing my legs and lifting them into position.

I’m in too much pain to punch him in the nose.

“What kind of music would you like?”

I’m stumped. What have you got?

“I’ve got the Doors in the player,” he tells me.

Sounds good. I put the head phones on and lie back. Exhausted to the core.

You know that it would be untrue
You know that I would be a liar
If I was to say to you
Girl, we could get much higher . . .

Next time: answers, plans, and proof that bad days can get worse

Monday, May 24, 2010

More Borg than ever

Wires and medical tape wrap around my body, a Frankenstein mix of Egyptian mummification and Ivy climbing the walls of an old building.

Like Star Trek’s Borg characters, I am becoming more machine than man.

One machine pumps insulin into my body to keep me out of a coma. Another machine watches my blood sugar to make sure the first machine does not give me too little or too much insulin. A third machine is used to calibrate the second machine by drinking drops of blood several times per day. Lenses of polycarbonate help me to see, lenses implanted inside those lenses help me to read. High tech synthetic materials keep my blood pressure low, my cholesterol in the middle, and my thyroid right where it should be.

And now, a Transcutaneous Electrical Nerve Stimulator, or TENS, unit is pumping electricity into my back to scramble the nerve impulses that signal my brain that there is trouble.

So despite two rounds of therapeutic medical massage my lower back continues to get worse. Needless to say, I still need to get to the root cause of all of this. That is to say: what the fuck is causing all this pain?!

Pain exists for a reason. It is nature’s way of telling us something needs to be fixed. I’m not ignoring that, I’m waiting (not very patiently) for the first of what no doubt will be a long chain of medical appointments with assorted experts and imaging centers to try and find out what the problem is.

There is a background radiation of pain, like the radioactivity following a nuclear blast, that never really goes away. But if I shift my leg, even so much as moving my foot a few inches, explosions of pain radiate out of my back and throughout my body. Like getting hit by lightning. And when I try to stand up when I’ve been sitting for more than a few minutes the pain causes the lights to dim, like an electrical brown out. Maybe I’ll pass out. Maybe I won’t.

I can’t stand up totally straight until I can hobble to a wall and use it to pull myself upwards. Once standing straight, the pain returns to the back ground radiation.

What at first appeared to be a garden variety stress reaction is now looking like it might be something more sinister. Either that, or the Human Tumor bought a really good Voodoo doll on eBay.

So on top of muscle relaxants, I starting popping pain pills. Working my way up from over-the-counter to more powerful options. But the problem is by the time a med can out-shout this level of pain, you are so stoned you can’t function.

If you are going to sleep all the time, you might as well be dead.

But in the totally weird way my life tends to work (and this is why even though I rarely go to church I sure as heck believe in God), a technology I had never even heard of entered the scene. Here’s how it went down.

On one of the last days at the clinic before my medical leave, as I was hobbling around, one of the senior nurses said off hand, “Maybe one of those electrical thingies would help your back pain.” Before I had a chance to ask what an ‘electrical thingy’ was, I was distracted by some sort of blood sugar emergency with one of my patients and electrical thingies dropped from my brain until the first day of my leave when I checked my email.

One of the long list of messages was spam from American 3B Scientific, who I sometimes buy educational aids from. The subject line caught my eye. Break the pain cycle! Oh? Do tell…

So I opened the email and they were having a sale on electrical thingies. They are little boxes with wires and EKG-like pads. And they were called TENS units. Huh.

The science behind TENS seems sound, unlike the guy I met who was convinced that his colored-light device could lower blood sugar.

Nerves cells are what transmit feelings from just about everywhere in the body to our brains. Some single nerve cells can be up to four feet long. Wild! But all nerve cells, both short and long, use electrical impulses to transmit the sensations of hot, cold, pleasure, and pain. It’s a telegraph system on steroids.

The idea behind the TENS system is to introduce static that scrambles or blocks the transmission of the pain to the brain.

So to me, logically, this technology sounds at least plausible in that it makes at least theoretical physiologic sense. Use electricity to fuck with a part of your body that uses electricity.

I Googled around the internet and found that TENS has a mixed reputation both amongst patients and docs. I also found one clinical study that showed a significant pain reduction in about half the people studied, comparable to the reduction in pain seen by the members of the “medicated” arm of the study. Of course, the problem with studying pain is that you are studying something subjective.

You can’t measure pain. If you want to study how well a therapy helps blood pressure, blood sugar, or triglycerides—it’s easy-peasy. You can measure those things. Pain can only be reported, and no two people experience pain the same way.

I then booted up my telemedicine system and touched base with some other folks in the field. Most had a similar answer, they seem to help about half of people who try them. As the devices seem to hover around one hundred bucks for most models, it seemed to me it might be worth the risk.

One Endo I know said she’s even had good luck treating diabetic neuropathy with TENS units.

I told Debbie about TENS systems and she asked around at her clinic too. As it turns out, one of her co-workers had used one as part of her physical therapy post-op on a shoulder operation a few years back. The next day Debbie brought it home so we could do a one-rat clinical study. Yep. I’m the rat.

The following morning, I opened the case and pulled out a silver box about the size of a TV remote, cables, pads, 9-volt, batteries, and a manual. I opened the manual and the first thing my eyes happened upon was:

Stimulation delivered by this device may be sufficient to cause electrocution.

Oh grrrrrrrrreat.

Other things: don’t use it transcerebrally. That means if you have a head ache, don’t put a pad on each ear and run electricity through your head. It’ll scramble your brain.

Don’t use it if you have a pacemaker. Don’t use it if your are pregnant. Don’t use it in the shower. Don’t put it on so that the power flows front to back through your chest ‘cause then you’ve got a defibrillator on your hands. Well, I guess a fibrillator to be linguistically correct, as instead of fixing a cardiac arrhythmia you’d be creating one. Don’t flow through your neck or it will jack up your carotid sinus (just trust me on this one, jacking up your carotid sinus would ruin your day.)

Sound dangerous? Yeah, well so are automobiles, and we’ll let any idiot have one of those.

But when you are in pain, electrocution or heart attack seem like the least of your troubles. My main problem was the manual was very clear on where and how not to place the four pads, but was mum on the subject of where you should place them.

Place the pads on your body according to the location specified by your physician.

My physician is at her timeshare in Puerto Vallarta this week.

Back I went to the internet, where I found what I like to call “mass consensus” on the location of pads. That is to say, many websites were in agreement. Like a medieval army placing a city under siege, the pads surround the site of pain, the leads from one side of the machine at the top, the two pads that connect to the other side of the machine on the bottom. Make sure the positive leads are on one side and the negative leads on the other.

That makes the power flow across the lower spine. I was ready to go, with only one remaining problem. I can’t even stand, much less reach my own back. Lucky for me I have a wife.

When Deb got home from work she used a beard trimmer to shave the fine hairs off my lower back, stuck the pads on me, and after trying several different things, ran the wires down through my underwear, up my pants leg, through my shirt, and out to my belt.

Sitting at the kitchen table I put a fresh battery into the machine. Then, making sure both dials were off, I plugged in the leads. Two sets of deep brown eyes regarded me with unblinking curiosity. Deb and Rio looked on with interest, he a small clone of her, from his eyes, his hair, his skin, and the shape of his face exactly the same as hers.

I slowly turned one of the dials…

Slowly, starting at a tickle, I felt something in my lower back. As I turned the dial up more it went from a tickle to a vibrating sensation, like one of those massaging chairs. Higher still, and you get into pain similar to what it feels like to get a tattoo.

I turned it back down again.

“Well??” asks Debbie.

“Are you still in pain, Daddy?” asks Rio.

I set both dials to the maximum vibrating sensation and decide to test the system by trying to stand up. I start to rise with no difficulty and no pain and then ZAPPPPPPPPP!

Now, I’ve never touched my tongue to a bug zapper, but I imagine that the feeling would be similar.

I quickly yank the leads out of the top of the machine and shut it down. What the fuck?!

Deb pulls up my shirt to find out what happened. The cords where pulled as I stood up, unplugging them from the pads and letting the bare electrodes run across my naked skin.

Fourteen IV-3000 dressings later there is no chance that any of these wires is coming lose again. But at this point I’m disheartened. The pads are reusable, but not water proof. Even if the TENS is the perfect solution, Debbie would have to pull the pads off me every morning and get me rigged for the day once I was out of the shower.

But this is only a test, I tell myself. Let us see how things go.

So after about 24 hours, I can tell you that I’m one of the 50% that a TENS will work for. My back ground pain can be reduced to negligible by a very low setting. If I’m distracted and sitting comfortably I can completely shut it off and be fine. If I need to stand up, I crank it up to the tattoo setting for about 15 seconds and then I can stand, without using a wall to pull myself up. Once upright, I can reduce the TENS power to the level of the massaging chair, and can walk pain-free.

Now is this simply a case of hitting yourself in the head with a hammer so you can’t feel the pain in your foot? I don’t think so. First, consider that the tattoo-like pain is at the same site as the endogenous pain. And while the tattoo pain is sharper, it is more localized and lower down the pain scale.

Standing with the TENS turned off maxes out my pain, right off the scale. And it radiates outwards. It shoots up my back, down my legs, around my torso. It is an explosion of pain that takes time to fade away like the dust settling after a car bomb has gone off.

Standing with the TENS turned on still requires pain, but it is different. The pain is less, both in intensity and in the nature of how it feels. It is a sharp, rapid, tingling pain. Kinda like when your foot “goes to sleep.” And as soon as I’m upright, I can lower the setting, and the pain is gone.

I’m completely convinced, that for me at least, the TENS really does interrupt the pain signals between my back and my brain.

But the thought of all this long hook up process every morning had me really depressed. I went back to the internet to see if anyone made waterproof pads. I didn’t find that, but I did find several TENS “garments.” Think Velcro back-brace with built-in electrical pads. Rather than stick the pads on your body, you just strap on the brace in the morning and attach your TENS, and off you go.

There were a number of different ones to choose from, but I went with the “ReliaMed TENS Lower Back Pain Relief System.” RMTLBPRS for short. OK, I just made up that last part.

I whipped out my Mom’s credit card and ordered one from Health Products For You. It was $114.95 with free standard shipping. But I paid an extra $25.49 to get it here quickly.

It’s not here yet, so I can’t report on it, but my hope is that it will offer similar relief, especially with standing and sitting, without all the setup hassles with sticky stuff, running wires, and using medical tape.

So now I’m off to check the internet for a Star Trek convention near me. I’m thinking I might stand a good chance at winning the costume contest as a Diabetic Borg…

Sunday, May 23, 2010

Is there a specialist in the house?

Diabetes Superblogger Scott Johnson gets the credit for giving me my online title of “the doctor who’s not a doctor,” and many of my patients simply call me “Doctor.” But I’m not. And the fact I’m called Doctor has often angered the real doctors with the real student loans.

For what it is worth, I spent several years trying to fight this; with several bad outcomes.

About half the time, upon being corrected, the patient ended up embarrassed about mistaking me for a doctor. And that effected all the bonding and communication necessary to do all that education, inspiration, guidance, and stuff.

About the other half of the time it lead to the “well what are you?” conversation, for which there was no simple answer, and that left me embarrassed about not being able to articulate what I really am. Which also effected all the bonding and communication necessary to do all that education, inspiration, guidance, and stuff.

Finally one patient told me, “Well you may not be a doctor, but you are still my Doctor,” and after that, I just ducked the whole issue chicken-shit style by just insisting that people just call me by my first name.

FYI, the word “doctor” derives from the two Latin words doctus and docere. The first translates to “having been taught” and the second translates into “to teach.” So by the literal meaning of the word, I could legitimately lay claim to the title. But of course, there is nothing literal anymore. We use Doctor in our society to signal a person with a terminal degree. An MD, DO, JD, or PhD. And I have none of those, or anything else following my name, for that matter.

And before you suggest it, I did look into those online degree-for-experience places. I was thinking my years of diabetes + my years of helping others with their diabetes + three books about diabetes + plus a long-running blog about diabetes should all = a PhD in diabetes. Of course, if that were the case, we’d be up to our ears in Doctors of Diabetes, wouldn’t we?

So there are a dozen places to get degrees for experience. One even has a shopping cart. Just move the degrees you want into your cart and check out when you are ready. The going price of a doctorate is $500-600 bucks.

Accreditation? One site ducks the issue by stating “The true recognition of any degree comes for its acceptance by the business community…” Another starts off with “Accreditation is achieved when a group of theoretically impartial experts…” Yet another starts by asking “What does the word accreditation really mean anyway?” So yeah, none of these folks are accredited in a meaningful way.

It seemed to me that they were just selling rather expensive faux diplomas. Having a framed PhD on my wall would deflect a lot of flack, but In my heart I’d know it was purchased with a Master Card and two box tops.

One of my secret fantasies is that some organization or school will give me an honorary doctorate. Then I could sleep at night with people calling me “Doctor,” and if someone more inquisitive or hostile asked me, I could simply and honestly reply, “oh, no, I’m not a medical doctor, I have an honorary doctorate from _______________ for all the hard work I’ve done over the years helping my fellow diabetics.”


When I visited with my brain mechanic, I was laying all of this out for her. Then I confessed: even though I know it is wrong, I secretly like it when my patients call me Doctor.

“Well, of course you do,” she replied calmly, “anyone would.”

Then I laid out the problems with any of the other titles that come close to describing what I do.

I can’t really claim to be a Diabetes Educator. First off, I think it is pretty clear that diabetes knows exactly what it is doing and doesn’t really need any help from me. On top of that 9 out of 10 diabetics are pretty fuzzy on who and what Diabetes Educators are and what they are supposed to be doing for us. And in the out-side world, 10 out of 10 people have never heard of a Diabetes Educator, and think that, based on the growth of diabetes stories in the press, that diabetes probably doesn’t need any more education either. It seems to be doing just fine. And of course, the CDE crowd is very, very, very clear that people like me need to by burned at the stake.

Although I have the title of “community faculty” (note the lower case letters) for the University of New Mexico Health Sciences Center’s Project Echo; it would be too much of a stretch for me to be called “Professor.” And University people like good old fashioned witch burnings almost as much as the CDE crowd.

And I’m not a nurse, of course. Coach is generic enough I could almost get away with it, but I don’t have a sports bone in my body, and the word to a bit too sporty for my taste. Of course I’m legitimately an author, but that really has no bearing on my clinic work and patients would just be confused about why they were meeting with an author.

And even though I practice a bit of sociology, a tad of anthropology, and a dash of physiology I can hardly lay claim to all the titles that go with those fields; and even if I could, that is only a small part of what I do. And the same is true for the rest of the ingredients I laid out in the last post. No, I can’t take any of those titles. They are just the DNA of my job. They all need to go into a centrifuge and help create a new title that reflects all of the disparate aspects of what I do.

My brain mechanic tapped her pencil on her note book and thought. Then clearing her throat she said, “You are a Diabetes Treatment Specialist.”

Come again?

“You are a Diabetes Treatment Specialist,” she said again. “When you’re at a cocktail party and someone asks you what you do for a living, you say that you specialize in the treatment of diabetes. If they then ask you if you’re a doctor you say, that, no, your work is much more nuts and bolts. If it’s a light social occasion you won’t need to say anything else. If someone is really interested you can tell them more. Give them details on what you do day-to-day.”

Huh. I specialize in the treatment of diabetes. That sounds about right. After all, education and self management are the pillars of diabetes treatment. So if I specialize in the treatment of diabetes, that makes me a Diabetes Treatment Specialist.

Not as much fun as being a doctor who’s not a doctor, but not too bad.

I think I might just try it on for size…

Friday, May 21, 2010

The Lioness and the Wind

Men. We are more than what we eat. We are what we do. Have you ever seen two men meet for the first time? We shake hands, look the other guy up and down once real quickly (Can I take him? Can I outrun him?), then we introduce our selves with two key pieces of information: we give our names and we say what we do.

“Hi, I’m Hank, I’m a plumber.”

“Nice to meet you Hank, I’m Alejandro, I’m a computer programmer.”

Tinker, Tailor,
Soldier, Sailor,
Rich Man, Poor Man,
Beggar Man, Thief.

So you women reading this probably think that this is silly. But it is not. Or maybe it is, but it is nevertheless a fact of man-dom. Is hardwired both into our DNA and our culture. This is why out-of-work men have nervous breakdowns. Lose your job, lose your identity.

Not that I’ve lost my job, not yet anyway, more on that in a bit. But I am having an identity crisis. You see, there is no name for what I do. So I don’t have an identity as a man. I don’t have a name for what I do, so I have no name for who I am. Deep-down, at my core, it turns out that this creates a certain level of insecurity. An insecurity I was barley aware of myself. But an insecurity that the Human Tumor was able to somehow detect and exploit.

For the last five or so years I’ve had this ever-evolving job working with my fellow diabetics. A job for which I have no formal training. A job for which I have no degree. A job for which I have no credential. Our world has no way of certifying or credentialing graduates of the School of Hard Knocks, this is not the age of the self-taught man. We live in a world that has no real respect for life-experience or life knowledge.

Or so I thought.

But as it turns out, many of my co-workers have great respect for me even so, as I’ve learned over the last week. Calls and emails: “come back. Come back and do what you do best.” Many have told me that if they were diabetics they’d rather learn from someone who has “been there and done that” than from someone with fancy credentials and no real-world knowledge.

The collective message: people with the Human Tumor’s credentials are a dime a dozen; but there is only one William Lee Dubois, and he is needed in the trenches where he belongs.

So right now I’m on a medical leave thanks in large part to my lioness of a wife who decided to take matters into her own hands. She heard me up late typing Friday night two weeks ago as I wrote the last post. Saturday morning while I slept she saw the comments starting to flow in—messages of sadness and support from all of you. She read the post then did something unusual for her. God bless her, she decided it was her duty to interfere.

While I was zonked out on a combination of Flexeril and Red Wine, she worked the internet. She found my medical boss’s home number and called. He was away at a retreat. She talked to his wife and found out where the retreat was. Then she (after whittling down a list of 470 persons in the U.S. with this name) called the host and convinced him to get my boss on the phone. “This is a medical emergency,” she told him.

The upshot of that was after reading my blog, I wasn’t fired (surprise!); nor was I permitted to drop to half time as I requested to maintain my health benefits. Instead, I was given a two week paid medical leave to try to sort out my body, mind, and soul. My boss told me he regarded it as a work place injury of sorts.

So that was Monday, almost two weeks ago. I saw some patients and cleaned my office so it would look nice to come back to.

Tuesday, not knowing where to start, or exactly what I was even trying to do, I drank, watched DVDs, and slept. Not necessarily in that order.

Wednesday, my mother called at 10am, while I was still in bed sleeping, and the phone scared the hell out of me and one of the cats, who was sleeping next to me. It was the first time I had ever seen a cat levitate. The intruding ring startled me so much that my back seized up.

After more muscle relaxants, pain pills, and putting my back brace on again, I sat at my desk and pondered where my life was at, where it was going. Debbie, who’s been with me nearly a quarter of a century, stated quite emphatically that, except for the last few months when the problems began, my work at the clinic made me happier than anything else I’ve ever done. By far. She was afraid I was throwing out the baby with the bath water. Maybe so.

It seemed to me that my goal for my medical leave should be to prevent my own impending nervous breakdown.

I called and left a message with a Medical Massage person that had been recommended and left a second message for a “brain mechanic” I have high regard for. The blood sugar part of the equation would need to wait; I had to remove the barriers fatigue, paranoia, stress, and pain before I can get that back on track. Then I focused on my ongoing identity crisis as a place to start.

So what do I do? I started a list with pen and paper.

I educate. I guide. I communicate. I advocate. I inspire. I empower. I heal.

What are the tools that I use to do that?

Knowledge. Empathy. Humanity. Acceptance. Kindness. Compassion. I use technology and analogy. Speaking and writing.

So what are the titles of people who do the various things I do? What is the recipe that makes up me?

A dash of Professor. A sprinkle of Doctor. A little bit of Nurse. Part Coach. Part Sociologist. And Economist. Anthropologist. Councilor. Ambassador. Social Worker. Priest. Scientist. Investigator. Pharmacist. Exercise Physiologist. Translator. Linguist. Dietitian. Psychologist. Trainer. Analyst. Sleuth. Researcher. And God help me, a little bit of Guru.

But that doesn’t fit onto a business card.

Next time: new career or new business card?

Saturday, May 08, 2010

The death of the doctor who’s not a doctor

The cancer had metastasized before I even knew it had hit me. In hindsight there were symptoms, I just didn’t feel them in time. I didn’t understand what they were. They were quiet whispers behind the scenes. Flitting motion in the shadows. Dark wings flapping in the night, assassins stalking.

Oh, don’t panic. This cancer isn’t in my body. It is in my work place.

But just as human cancer starts in one organ of our bodies, then spreads to others; so too can work cancer start with one bad apple and then infect another in a work place, and then another, and then another.

In medicine we know that the best way to survive cancer is to catch it where it starts. Cut it out. Remove it from the body. The poison the site with toxic chemicals and radiation so that it can never come back. You have to strike quickly to win against cancer. But organizations rarely recognize the source of a work cancer and cut that person out in time; before the spread starts. Decent people who want to communicate and work together in teams are no match for a human tumor.

The cancer that got me was a relatively new employee. One of those people who believes that the only path to knowledge and wisdom are credentials.

When I started building the diabetes program at my clinic I barely made minimum wage, I was in a small place in one of the poorest parts of the country. No one gave a shit about credentials, talented warm bodies were in short supply.

Don’t get me wrong. There was nothing shoddy. Nothing careless going on. We had to earn the right to do the things we were allowed to do. It was not simply granted because a certain chain of letters followed your name.

But no good deed goes unpunished in medicine. We grew from 30 diabetes patients to 260; the growth for other types of patients followed the same path. We grew from one nurse to eight nurses. From one doc to three. Then four.

And number four was the cancer. I was a marked man before I even knew it. I was too busy doing my job to realize the well was being poisoned when I wasn’t looking. It is amazing how one person with ill intent can so quickly destroy what took years to build. It is amazing how one vicious soul can so quickly devastate more gentle ones. Some of us just don’t have the skills for a knife fight.

I’m still too shell shocked by lies, twisted truths, half-truths, and the lack of support from people I worked side-by-side with for years to even fully understand, much less relate to all of you, all that has happened over the last months, weeks, and days—accelerating to a terminal velocity today. My soul is too bruised to tell the story in the detail that you all deserve. Maybe in time. But not today.

I tried to stand up, to fight this cancer, but I was not quick enough, nor powerful enough, nor sneaky enough to win. I was mowed down. Now instead of bruised, I’m bloodied and the cancer is that much bolder and stronger.

Back spasms from stress cripple me for days on end and riddle me with pain. Insulin has no more effect than water. Sleep is a stranger to me. The daily stress of the last three months has rocketed my A1C from 6.9 to 9.2 making my blood toxic to my tissues. My kidneys are at risk. My eyes.

I dread getting out of bed in the morning. My joy at driving to work has been replaced by anxiety and fear. My stomach churns. I’ve become paranoid, not knowing where the cancer has spread. Who is still my friend. Who is my enemy. My safe and warm nest is now cold barbed wire.

I eat lunch alone in my tiny postage-stamp office; the laughing and chattering of my coworkers a distant echo down a long hallway.

It sucks but I am too tired to take care of my diabetes, two hundred and sixty other people’s diabetes, a ten hour day with a two hour commute, plus get into a virtual daily knife fight with a coworker. For months I ignored the growing slights. The increasing nasty little side comments. The petty changing of meds just because I thought they were a good idea. But then this person, this demon, this cancer, did something that risked a patient’s health just to get back at me.

But in medicine, credentials always win the day.

I’m not strong enough, wicked enough, clever enough for this fight. Good does not always triumph. Sometimes the folks with the back hats have the last laugh.

So I’m walking away. It kills me. It rips my very soul from me. I would cry, but I have no strength left to generate the tears. Just yesterday an old woman told me “I thank God every day that he called you to our village.” I used to believe that. I used to believe I was on some sort of mission. That I was called to help our kind to thrive despite of our disease.

Now I don’t know what to believe.

I cut my hours to the bone to keep my insurance for now. I have to work a little while I figure out what to do next. It is the worst economy ever, at least in my lifetime, to look for work. But I can’t stand another day like the ones I’ve been living through . . . well, I guess dying through would be more accurate.

The cancer has infected the work place. It is moving from person to person. Teamwork is dying before my eyes. I’ve become bitter and disillusioned. To try to save myself I am removing myself from the source of the disease; but it may be too late. When I’m with my patients I feel full of life and wisdom; love and understanding. I can help, teach, guide. But then I have to interact with the tumor, and all that good feeling is erased and I feel not joy, but sick at heart.

With bitter sadness beyond describing I know I have to leave. And even if I had the opportunity to do this job somewhere else, I don’t know if I have what it takes anymore. The cancer has infected my soul. As I couldn’t cut the cancer out, I should have tried to escape sooner, before it made me sick.

And what is the next act? What will I do now?

I do not know.

But I think I need to find a field far from medicine. A field with no licenses. No credentials.

A field where it is your name that matters, not the letters that follow it.