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!).

Monday, January 20, 2014

Son of the absent-minded professor

I’m standing in the kitchen, but I haven’t a clue why I’m there. Again.

I mean, I got up out of bed and came in here for some reason, obviously. I scratch my head distractedly and dislodge a few scabs. Crap! I’m supposed to leave those alone. I try a mental checklist. Am I hungry? No. Am I thirsty? No. Did I need a cup of coffee? A glass of wine? No and no. Defeated, I wander back to bed, clueless about the mission I set out on less than a minute before.

This is my new reality. As my body heals, my mind dissolves. Probably, I’ve been out of my mind for a bit, but was just too sick to notice it. Now I’m well enough to be alarmed by it.

My short-term memory is absolute shit. I’m very easily distracted. I forget to calibrate my CGM, and often leave it behind in various parts of the house. Rather alarmingly, I frequently forget to take my insulin, both basal and at meals, with the expected results.

I can’t read because I lose track of where I am on the page, or I spend an hour re-reading the same paragraph without retaining the words. Other times I simply can’t make sense of the words that are in front of me.

The same thing happens when I try to process conversations, especially ones with more than one thought, or options to choose from. Please don’t ask me if I want a hotdog or a hamburger; the question is just too confusing. In the middle of conversations I forget what I’m talking about. I’m like one of those talking dogs in the Pixar movie Up that stops and shouts “Squirrel!” in mid-sentence.

Writing takes much more effort now. I guess I took it for granted how easily it used to come to me. Words, sentences, paragraphs used to flow from my mind to my fingertips, dancing on the  keyboard to form completed stories. Now I struggle for hours and doubt every phrase.

Oh, but it gets worse. Scarier, anyway. Packages arrive in the mail for me that are items I apparently bought on eBay. But I have no recollection of buying them.

Earlier this week, I tried to drive to town. It was a horrifying experience. Just keeping the car on the two-lane country road was overwhelming—too much sensory data to keep track of. Ten minutes was more than I could handle. I had to stop and let my 88-year-old mother take over.

Oh, and then there’s that stomach thing.

As the blisters slowly scabbed over, then melted away, like dirty snow on the side of the freeway succumbing to the returning sun, my arms were left covered with little scars that looked like a school of baby squid had attacked me. My legs are still a mass of scabs and I still fall asleep easily, but otherwise I’m healing well.

Sorry. What was I talking about?

Oh, yes. It’s easier with a written page where you can just look back and find where you went astray. An odd symptom showed up as the rest of my body began to heal. Or maybe like the whirr of a fan that’s drowned out by a blaring TV, it was there all along but now that the TV is turned down I can hear it. There is something wrong with my gut.

I’m not swollen or bloated. I eat and eliminate just fine and yet… And yet…

It’s hard to describe but I’ll bet this is what if feels like to be pregnant. There’s a constant pressure on my diaphragm. I can’t say if it’s pressure or pain. A little of both. I can’t lie on my side. I can’t tell if it’s from my lungs pressing down or my intestines pressing up.

It’s bilateral, the same on both sides, which, while odd, is also oddly reassuring. Liver stuff would be more right-sided. Spleen left. Appendix would be sharp pain, as would gallbladder or pancreatitis.

It got freaky enough that even though it was Debbie’s day off, I asked her to take me to the clinic. It had been 23 days since I’d last set foot in the building and instead of feeling home-like and embracing, it was strangely alien. I spent some time in “my” office, but it didn’t feel very me at all. It was strangely sterile. I felt like I was party-crashing someone else’s space. This is the place I spend the bulk of my time? Seriously? Funny, I can’t picture myself working here at all.

It was nice to see my co-workers—at first. I say that because they all said, “Hey it’s great to see you again!” Followed immediately by, “Wow, you really look like shit!”

I had actually been feeling a little better, but after hearing that 18 times, I was ready to go back to the ER.

But what for? To say I’d become an absent-minded professor with a bowling ball in my stomach?

Amway, I only remember snippets of that doctor’s visit—so this is third-hand from my wife—who was there at the time and has talked to my doctor several times since. This is his theory as I understand it, but he was quick to point out we have woefully little data on chickenpox in 50-year-olds, much less chronically ill ones, so the exact course of the disease is not well documented. But we do know that chickenpox can get inside. Oh, not in your mouth—although that happens, and I pity any poor soul that’s suffered through that. I mean that your internal organs can get covered with the pox like your skin does. Viruses. Those little fuckers get everywhere. But it makes sense, after all, chickenpox isn’t a skin disease. It’s a systemic infection that manifests itself via a skin rash—or maybe a rash on the lining of my diaphragm as well.

Of course the only way to know for sure is if I have an unfortunate encounter with a samurai sword. (Hey, it could happen—but let’s hope not—the last month has sucked enough.)

Moving on, did I tell you about the headaches last time? Those I remember. In fact, the first week of the illness I remember. It’s the last three weeks that are largely completely blank with little fragments of memory, some of which are apparently real and others of which were apparently dreams. Deb has been providing the reality checks for me.

“Yes, you did go to the ER by yourself the second time.”

“No, we didn’t go to University Hospital.”

“If Bill Clinton did come to visit you, I missed it.”


Wow. This must be what it’s like to get Alzheimer’s. Scary and sobering.

Hmmm…? Oh. The headaches. For days I had headaches. Not migraines. Not throw yourself off a cliff or in front of a train headaches. Just garden-variety annoying as hell headaches that did not respond to ibuprofen. Even the big 800 milligram babies did nothing to touch them.

My ‘pox discharge instructions from my second ER visit clearly said to return ASAP if I got headaches.

Chickenpox or the egg? Which came first?

I had told the folks in the ER about the headaches but I don’t remember if it was the triage nurse, attending nurse, or the ER doc I told—and I don’t recall if it was the first team or second team I discussed it with. Anyway, I decided that if the headaches got worse I’d go back. Then everything got so much worse…

Anyway—with the clarity of hindsight, my doctor is now convinced I did not completely duck the bullet when it comes to the scary side effects of adult chickenpox (and now I also know that there was some generalized worry at work that I would not pull through).

The stomach thing—he thinks—is the aftermath of internal organ involvement of the chickenpox. No lasting harm that he can detect via physical exam and lab work—but the impact of it is like being punched in the stomach by Popeye the Sailor Man.

Well, 500 miniature Popeyes.

The prescription: Watchful waiting to see if it worsens or improves. I perceived that it had been getting worse, but now I think it’s stabilizing.

Except… Except… Well, except I can’t really think at all!

And that, dear readers, seems to be a “gift” of my next major complication of adult-onset chickenpox: Encephalitis, a swelling of the brain. In clinical hindsight, there’s good evidence that my headaches were caused by my brain swelling from the body-wide attack of the virus.

I guess I had chickenpox on the brain.

Anyway, if your throat swells up, no big deal. So long as you can still breathe, that is. If your ankles, knees, liver, or even your heart swells, the body can compensate. The body is flexible. But your brain lives in a rock-hard shell of bone only slightly larger than it is. If your size 9 brain swells to size 11 inside your size 10 skull—you have a problem. A big problem. Encephalitis can kill you. It can also cause brain damage. Do I have brain damage?

I’m sorry. What was the question again?

But seriously, how would you know? I think the fact that I know I’m not right is a good sign. My doctor told Debbie he thinks it’s more like a concussion. He told her it’s like I fell down and smacked my head on the concrete. Six times. In a row. Really fast. That analogy I can remember!

So I can’t think right. I have no short-term memory. I can’t read. I can barely stay awake for more than a few hours. Hell, even driving is a challenge. How the fuck am I going to practice medicine? Being a diabetes educator is a bit like being a firearms instructor. It’s my job to teach people how to safely handle potentially deadly medicines. The thought that I might screw it up terrifies me.

I’ve always loved my work, but right now I’m afraid to do it.   

I get calls and emails from work. When are you coming back? I don’t know, I say. But what I’m thinking is: I don’t know if I will. I don’t know if I can.

Scarred by a school of baby squid. Beat up my miniature singing sailors. My head pummeled repeatedly into the sidewalk. It’s a hell of a way to start a new year.

Not that I remember a new year, but my wife says it happened. Hey, baby, are you sure Bill Clinton didn’t drop by? OK. If you say so.

Ummmm…. Hey, you wouldn’t happen to know why I’m standing here in the kitchen, would you?

Sunday, January 05, 2014

Poison dew drops

Last night I dreamed of airplanes. Again. Every night I dream of airplanes. Every night for the last seven nights, anyway. Big ones. Little ones. New ones. Old ones.

But my dream planes aren’t soaring high and wild in blue skies like they were built to do. There’s always something wrong with them. They’re broken down. Out of fuel. Victims of weather. My dream planes are trapped, barred from their natural environment. In my dreams, they are prisoners of the ground.

This morning as the fog of dreams lifted, I put it all together. My subconscious is processing the fact that I, too, am a prisoner.

Oh, Lord, where to even begin this story? The last week is such a blur of confusion, and fever, and pain, and fear that a coherent tale is not within my grasp to tell. But if I don’t remember the course, I do remember the start. And it started on Christmas Eve, on my drive home from the clinic.

Do you know that peculiar deep, dull ache that signals the fact that a virus has successfully established a beachhead in your body? Yeah, that’s right, the one that triggers your brain to say: Oh, fuck, we are going to get sick and there’s not jack-shit we can do about it. I got that pain, but in a very strange place. In my right hand.

By the time I got home, both hands throbbed. And I got sleepy. I actually took a nap. I never take naps. By Christmas noon, it felt like all the bones in both my hands had been smashed to bits with Thor’s hammer. My body was wracked first by chills, then by sweats. I broke out my emergency Tamiflu.

The next day, briefly, I felt better and went out to run an errand. It was not overly cold nor overly windy, and I had my wool coat and a scarf, but with little warning I felt as if I had been thrown into a pool of ice water and then kicked into a wind tunnel. I have never, ever felt such cold. For the first, time I understood the phrase “chilled to the bone.”

That night I was catapulted into the depths of the Amazon jungle at the peak of summer. My body gushed water from every pore. I drenched my t-shirt, my sheets and blankets, even my mattress cover. At three in the morning I had to dry off my legs with a bath towel. And the next night was worse. Then, the following morning, strange blisters greeted me:

A few on each arm. A few on my legs. What the fuck? They didn’t itch. They didn’t hurt. Still, it’s one thing to be sick—if you have a virus there’s little you can do but ride it out. But weird blisters out of nowhere? That’s another thing altogether. And I quickly developed a red rash, as well. I texted my boss with a concise history of the present illness and a description of the odd visitors to my skin. He replied within five minutes, saying get your ass to the emergency room NOW.

Well, he’s actually a bit more linguistically reserved than I am, so I think his exact words were something more like, “If I were you, I would present myself to the emergency room without delay.”

So I did. Whereupon I was misdiagnosed with viral exanthem, a fancy word for any rash caused by a virus, was told to have a nice day, and was sent home with the friendly advice to come back if anything changed.

Something changed, all right. By the next day I itched. Everywhere. Did you know your skin is your largest organ? I used to know exactly how large it is, if you were unfortunate enough to have someone remove it from you and stretch it out on the ground in front of you, but I can’t recall the figure and I’m way to sick to look it up right now. But trust me on this, when every square inch of it itches, you appreciate the sheer scale of your skin and how small your hands are in comparison. Two hands are not enough when you itch everywhere.

So, like a good patient, I went back to the ER. This time, after triage, the nurse ushered me out of the lobby through a different door. Huh, I thought to myself, I didn’t realize they had two complete ERs here. Then it dawned on me. We weren’t in the ER any more.

We were in the Intensive Care Unit.

And I was taken to room 16, which had a large red-lettered sign next to the door that said: ISOLATION. Oh fuck. I think my day is about to get worse.

I had no idea.

After a time, a different doc from the one who saw me the day before came in. He looked me over, head to toe, while keeping a respectful distance. His scribe cowered in the corner, as far away from me as she and her tablet computer could get while actually still being in the room. Finally the doc said, “I’ve haven’t seen this in twenty years, but I’m sure I know what it is.” Then he gently reached out one finger and traced the expanding line of clear, hard blisters that ran down my arm, and as if quoting Shakespeare, said: “Like dew drops on a rose petal.”

I beg your pardon?

“That’s how our medical school textbooks described this in the old days,” he told me. “You have chickenpox. It’s rarely seen in adults, and almost never in children since we started immunizing them in the 90s. Did you have chickenpox as a child?”

At which point I had to admit that being child number three in my family, my mother was often vague on such points. Then the doc asked if I worked in an environment with a lot of children, especially, perhaps, of the undocumented type?

I told him I worked at a rural clinic, and he said simply, “Well, there you go.”

Now you might think that chickenpox is no big deal, but you’d be wrong. To children it is an annoyance, to say the least, but to adults it is a potentially deadly illness. My discharge documents said, and I’m quoting verbatim:

Chickenpox is a very serious illness in adults. There is a higher risk of complications, including:
  • Pneumonia.
  • Skin infection.
  • Bone infection (osteomyelitis).
  • Joint infection (septic arthritis).
  • Toxic shock syndrome.
  • Bleeding problems.
  • Problems with balance and muscle control (cerebellar ataxia).
  • Death.

If I experience any of these I should return to the ER at once. So if I die I’m supposed to go to the ER instead of to the morgue?

I was put on a more powerful anti-viral called Valacyclovir. My insurance declared it an uncovered medication. It cost me $222.29 for twenty-one pills. Oh well, at least the bastards will have to pick up the tab for two ER visits in the last week of my policy’s existence on earth.

Now, law requires pharmacies to give patients something called a “Prescription Information” sheet with your drugs. It’s very long, very technical, and in very small print. As someone who works in a clinical environment, I rather hate them, as they serve as primers for hypochondriacs in most cases, rather than as useful sources of patient education.

That said, I do read them myself. But rather than telling me that the drug might give me an upset stomach, cause ringing in my ears, and make me pee blue, it told me it was important to wear a condom. Excuse me?

Welcome to the happy world of viruses. Chickenpox, shingles, and genital herpes are all cousins and Valacyclovir is used to try to beat them all into submission. Oh, and the real side effects of Valacyclovir include, “rash, hives, and itching.”

As if I could tell.

That night the assault by the Varicella virus began in earnest. The next morning I looked like this:

And it all went downhill from there. Chickenpox in adults is a bigger, meaner, tougher son-of-a-bitch than it is in children. It lasts longer, covers more of the body, and heals slower. And apparently its also bigger, meaner, and tougher in men than it is in women. Oh, and on top of that, it is bigger, meaner, and tougher the older you are when you get it. I hit my fifth decade this fall, and Varicella was itching for a fight.

And I got my ass kicked by it.

Wave after wave of new blisters appeared. My scalp feels like cauliflower. My skin feels like a braille dictionary. Every part of my body is covered with blisters. No square inch has been spared above my knees and the march of the Varicella continues down my legs. I have blisters inside my ears, on my fingers and palms, and on the soles of my feet. And, yes, I even have blisters on my you-know-what, as well.

I’ve slathered myself in calamine lotion to the point where I look like a gay-pride Druid priest, and have nearly overdosed on Benadryl. My blood sugar is crazy-high and insulin might as well be water. My energy has abandoned me. I sleep more than I am awake, and like all prisoners, I’ve lost all track of the days of the week.

But oddly, the worst part, the most unexpected part, is the assault on my vanity, which I didn’t actually know that I had. Now, I’m sure the opinions of the fairer sex as to my appearance vary, but I’ve never regarded myself as particularly handsome. And that has never bothered me. I’ve been able to compensate for my average looks by being conscious of style, and by exercising considerable charm, as just about any lady who’s met me can testify to. So that being the case, it never occurred to me that I might be vain.

But I look revolting. I look so fucking gross I can barely stand to look in a mirror. Maybe there’s a big difference between accepting being not-particularly-handsome and being hideous, or maybe I have a more shallow personality that I thought I did. Something to think about. Later. Assuming I live through this. And at times I’ve been so sick it seemed easier to succumb than to go on.

But that’s just part and parcel of being very sick, and damned if I’m going to die from a cousin of genital herpes.

So here’s how it works: The virus comes in waves. And each wave has a lifecycle. First a red dot. Apparently I never noticed the first wave of those, but now I’ve learned to recognize them. Next the poison dew drop. Pretty little thing. Then it gets ringed by a blood-red circle and the dew drop turns milky. Not so pretty now. Then the top caves in like a lunar crater, and a scab begins to form. Once the blister fully scabs over, the virus in the blister is dead. When all the blisters have scabbed over, I am no longer a threat to society, and I’m free to move about the planet again. Well, more correctly, at that point I’ll be no medical threat. There’s still the possibility that my movie-monster appearance might scare the shit out of people.

So when will all the blisters heal over? Well, I’m seven days into this and so far only three of my blisters have scabbed over. Meanwhile new ones are cropping up like desert wildflowers after the rain. Each time I think there can’t be room left on my skin for new blisters, they seem to find themselves space, crowding in on their neighbors, forming little Varicella condominiums.

Clearly, this is going to be a long road.

Now I start my day with an assessment of my battered epidermal landscape. I guess I’m getting healthier because at this point my own clinical curiosity has overcome my revulsion. God help me, it is fascinating. I just wish it weren’t me. But then again, I can’t think of anyone in this world I hate enough to wish this off on.

Today is bright and sunny. The blue sky beckons. It’s a new year. Time to fly off into new adventures. But the outbreak continues unchecked, with new spots sprouting on my hands and feet. So for now I’m trapped well short of the runway of life, along with my dream planes, yearning to break free and fly again.

And no doubt, tonight I will dream again of grounded airplanes.

Thursday, January 02, 2014

New Year, new copyright

© 2014

Mitts off all you copy-pirates, copycats, and plagiarizers.