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?


Anonymous Anonymous said...

Oh wow man, that's awful, glad you are on the mind. Memory loss is a normal for me. Forgetting things too. You learn to keep everything on the phone and run checklists. And try to do the same thing all the time. It's a sleep thing

Feel better and people get your kdis vaccinated.

11:26 AM  
Blogger Ginger Vieira said...

Aww, Bill! I admire your ability to write so eloquently about something so harsh! Thinking of you, buddy!

12:07 PM  
Blogger k2 said...

Hang in there, Bill!
You've been through so much and your ability to share what's happened with words filled with honesty, humor and beauty on such a jarring attack speaks volumes.
Give your body time to heal and your memory will follow.
And if you need anything at all, please reach out to your DOC family - We love you and we are here for you!

12:16 PM  
Anonymous Colleen said...

Just how much more miserable can it get?
I truly hope you're at the end of your misery and gloom.

3:03 PM  
Anonymous Leann Harris said...

I am so sorry Bill! Our brains are the last piece of our body we - mostly - feel we can rely on, if we can use them well enough to stay conscious. I am so sorry that now it's messing with that blanket of security as well. I know your brain will bounce back better than your pancreas - just hang in there and keep breathing. We're all thinking of - and for - you! ;)

5:12 PM  
Anonymous kelly said...

Wil, my thoughts are with you as you recover. Sorry it is slow, and has mysterious side effects.maybe the writing is good to exercise your brain.

7:24 PM  
Blogger Jonah said...

Hi Wil.
This post brought back memories (haha) and I hope my experience might be a little helpful for you to know about.

I experienced memory loss including everything you're saying except for receiving packages that I didn't remember ordering, starting about a month after I was diagnosed with diabetes, getting worse for another eight months, and then slowly, slowly, incredibly slowly, getting better.

I had an MRI and they didn't see brain damage, but numerous studies have shown that memory loss after DKA like mine is, although not the norm, not unusual, particularly when there is initial swelling in the brain- the memory loss persists.

Anyways, the first year I was often more scared by my disorientation and memory loss than by the diabetes, and rightly so.

So I don't know if it will be at all encouraging or discouraging to you to know where I'm at, almost 7 years after the nadir of my memory issues.

#1 My ability to concentrate and follow a conversation and not lose track of where I'm at in a train of thought improved markedly from my nadir, up to the point I'm normal as far as it goes, but I used to be VERY good at that and now I'm not.

#2 I stopped feeling disoriented and the sense of loss has mostly dissipated. I stopped expecting myself to remember what I can't remember.

#3 I lost the vividness of all of my memories. Very few have returned. The positive part of that is that not only do I no longer have flashbacks, I don't remember the bad stuff.

#4 For a while, I had no real sense of events being connected- it was very very hard for me to feel placed in time. Thank God that came back!
However, I am now much more focused in time. Although I can and do think about the future, and it is real to me, it's not nearly as real as it was. And the past is just not very important.

#5 I used to notice every little misspelling and grammatical error. Then I started making them everywhere - it's and its being the same to me, even they're and there and spelling were a mystery. I now get them right most of the time but it's not obvious to me anymore what's right and what's wrong.

By the way, here is a funny story from about two years after my memory loss started, back when I still felt like I was faking it a lot of the time because I was pretty disoriented.

My boss went on vacation and left me with more responsibility than usual, and I did my best to handle it. Every day of her vacation, I wrote a note about what I had done. When she got back, she read the notes.
And she told me that I had written that I had fixed a piece of machinery, and asked me what had broken. Well, I sure didn't remember ever fixing that machine! I didn't know I knew how to do that. So I went over to the machine and got down there and I got a vague idea that maybe something had come apart a certain way and I had put it back together, and that's what I told her I did.

I guess what I wanted to say with this comment is that memory loss is really hard but even if you don't get it all back, you can deal with it. It will change you, but it doesn't have to be a bad change.

7:34 PM  
Anonymous Jen Jen said...

I'm out of it for a while after any bug. When I run high my memory is always bad and it lingers for a while even after getting it back under some resemblance of control, it always runs ridiculously high regardless of what I do when I've got a virus. I can't imagine not being out of it like that after Chickenpox. Prayers.

8:12 AM  
Blogger Bernard said...

A pox on your pox Wil. And also on its side effects. Many prayers.

5:31 AM  

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