jimhines

While I was in France, I hit my 20-year anniversary with type 1 diabetes.

In October 1998, I was a graduate student at Eastern Michigan University. I’d been really thirsty for a while, was having to pee all the time, and had turned into a Very Grumpy Jim. I also lost about 20 pounds, dropping to around 130ish.

My father is also type 1, so I was somewhat familiar with the disease, and had an idea what was happening to me. I went home and borrowed dad’s glucose meter, which said my blood sugar was too high to read. And that day — Halloween of 1998 — off to the hospital we went.

I’ve blogged about this from time to time over the years. I started out taking multiple shots a day and using a glucose meter that took 30 seconds to process my blood sample. A little while later, I switched over to an insulin pump. The meters got faster, smaller, and started using smaller blood samples.

I changed my diet in some respects — the biggest change was probably switching away from sugared pop — but I don’t have a rigid diet or meal schedule. Instead, I check my blood more often and fine-tune with my insulin as needed.

Earlier this year, I upgraded to a continuous glucose monitor, which gives me rough real-time data about my blood sugar. I still need to manually test my blood a few times a day to calibrate and double-check the CGM. My current meter is the size of a large USB thumb drive, and automatically sends my blood glucose reading to the pump. It also buzzes and beeps at me if my sugar starts to drop too low, which is both reassuring and obnoxious.

I’ve been pretty fortunate so far. We haven’t seen any direct complications from the diabetes. I’ve had a few other conditions come up that tend to be more common in diabetics — a minor thyroid malfunction, Dupuytren’s disease (which will require hand surgery in the coming years), and a bout of Peyronie’s disease (which is more common among people with Dupuytren’s, but may not be directly linked to the diabetes…) Annoying as these have been, they were all manageable/treatable, one way or another.

I’m also lucky to have very good medical insurance, which has covered most of the cost of my supplies and medications. A lot of people aren’t so fortunate, having to pay hundreds of dollars for each vial of insulin. Some end up rationing their insulin, which can lead to hospitalization and/or death. The American Diabetes Association has more information on their Make Insulin Affordable website.

I’ve learned two big lessons about the disease over the past two decades. (So I’m averaging learning one lesson every ten years. I never claimed to be a quick learner.)

1. The worst thing you can do is ignore or neglect the disease. A lot of the side effects happen over the long term. If I blow off checking my blood sugar for a few days, or let my sugar get out of control for a bit, it’s not likely to kill me right away. I might not even notice any immediate problems…for a while. Unfortunately, by the time you do notice, you’re likely to be facing major medical complications.

A family friend got into trouble with out of control type 2 diabetes. She needed a kidney transplant, among other things. My father used to play racketball with a man who lost a foot to uncontrolled diabetes.

It’s a pain in the ass having to manage this thing every single day, but it’s a heck of a lot better than the alternative.

2. There’s no such thing as perfect control. Yesterday I had a sandwich, granola bar, and yogurt for lunch. My blood sugar jumped into the 200s and insisted on staying there for much of the early afternoon. Today I had the exact same lunch. I took the exact same amount of insulin. My blood sugar is currently 112.

Why the difference? Heck if I know. Maybe my activity level was different? Maybe I was more stressed? Maybe the diabetes fairy rolled a natural 20 and got a critical hit on my blood sugar yesterday.

There’s a lot I can and should do to fine-tune my control, but there are too many variables to control them all, and sometimes stuff happens that just makes no damn sense. So you do the best you can. Talk to the doctor for ideas on how to improve control. But also recognize you’re not going to achieve perfection.

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Having inherited this thing from my father, I’m worried about passing it along. Dad and I both became diabetic at age 24. Both of us were in grad school, too. Ergo, I’ll make sure my kids don’t go to grad school until they’re at least 25. Problem solved!

Or not. But given how far the technology has come just in the past 20 years, let alone the 44 since Dad was diagnosed, I’m hopeful that when and if one of my kids comes down with it, we’ll have gotten the disease mostly under control, if not cured outright.

And on the day we do cure this thing — assuming I’m still around — I plan to celebrate with the biggest hot fudge sundae.

Mirrored from Jim C. Hines.

Last Thursday, I went in to get set up for a five-day run with a continuous glucose monitor (CGM).

Quick overview – with type one diabetes, the pancreas up and quits producing insulin, because it’s a LAZY SLACKER! Therefore, I take insulin via an insulin pump, which delivers a baseline dose throughout the day, and allows me to program additional insulin when I eat. I check my blood sugar about six times a day to help me keep it within a relatively healthy range.

The CGM is a device that automatically checks your blood sugar every five minutes. It automatically sounds an alert if your sugar goes too high or too low. (Sadly, it can’t be programmed to do the red alert klaxon from Star Trek, but some day…)

It works by measuring the interstitial fluid, as opposed to the blood, so the measurements aren’t quite as precise as the ones from my glucose meter. But it does a great job of showing trends (whether your blood sugar is climbing or falling or just chilling and hanging out). It also produces a graph to let you see what your blood sugar is doing over time.

I was hooked up with a Dexcom CGM, which involves a tiny flexible needle that goes into the side of the belly and is hooked up to what may or may not be a T-800 chip from Cyberdyne Systems. This made me a little nervous, since I’ve already got the catheter from my insulin pump stuck to one side of my belly, and the CGM is a little bulkier, as you can see here.

( Read the rest of this entry » )

Mirrored from Jim C. Hines.

I've spent the past day and a half with a stomach bug, which made me once again contemplate the possibility of installing Mira Grant-style sanitizing showers and blood screening tests in my house.

I've talked before about how I need to regularly test my blood sugar in order to keep my diabetes more-or-less controlled. Well, when I get sick, I have to test even more often. Here's why:

The vertical axis is my blood sugar readings, and the horizontal shows each blood sugar test throughout the course of two days or so.

It would be one thing if getting sick messed up my blood sugar in a consistent and predictable way. If I knew I'd always run high when I got sick, I could adjust the insulin pump to give me a little more insulin during that time.

But as you can see, I was all over the map for the past 24 hours, with a low of 23 and a high of 468.

Not cool, diabetes fairy. Not cool at all.

The low was the most dangerous. Normal blood sugar should be around 100 or so. I was still up and walking around at 23, but had it dropped any lower, I would have been in trouble.

Here's a fun scenario. You have a low blood sugar, which is normally treated with juice or other high-carb food and drink. But your stomach is too messed-up to keep anything down. What do you do?

Well, there are pills to help suppress nausea, which I completely forgot about because my blood sugar was 23 and my head was a bit fuzzy. So I ate high-carb, quick-acting snacks, disconnected my insulin pump for about six hours, and hoped I'd absorb some of the glucose before...um...sending a form rejection to my food.

I'm not thrilled about hitting 468, either. This happened after I finally got to sleep, but because I was sleeping, I couldn't check my blood sugar as frequently. Oops. As much as I needed the rest, in hindsight, it might have been good to set an alarm for one or two in the morning, just to roll over and check my blood.

Short version: Diabetes + Another Illness = Visit from the Blood Sugar Gremlin.

(Also, I'm using this as my excuse for not answering email over the past few days. Sorry about that!)

A quick recap for newer blog readers: I’ve had type 1 diabetes for 13+ years, and I blog about it occasionally for several reasons:

1. Because I know other writers read this, and it makes me cranky when stories get the details of my disease wrong.
2. I’m comfortable talking about it, and I think helping people understand this stuff is a good thing.

Previous diabetes posts are, shockingly enough, tagged with the diabetes tag.

Anyway, one of the questions I get fairly often is “Doesn’t that hurt?” People asked that more back when I was taking 6-7 injections every day. Now that I’m on the insulin pump, all they see is the fingertip blood tests. But they still ask, and understandably so. Diabetes is a pretty needle-happy disease. (So if you’re needlephobic and don’t want to read about ‘em, this is your cue.)

The answer is … yeah, sometimes. It depends.

Let’s start with a picture I’ll call Jim’s Collection of Stabby Things. On the left is a typical insulin syringe. I keep some around just in case I ever have trouble with the pump.

In the middle is a spring-loaded tool designed to insert the catheter for my insulin pump. That white thing on the end is an adhesive sticker and a metal needle threaded through a teflon (I think) catheter. The spring jabs it into my belly, I pull out the metal needle, and the sticker holds the catheter in place for 2-3 days at a time, allowing the pump to deliver insulin.

I love technology.

On the right is the finger-stabber I use to draw a small drop of blood from my fingertips to test my glucose levels. I’d describe it as essentially painless. I test my blood without thinking, and I can’t remember the last time I noticed any pain. Which is odd, considering that this was the hardest thing for me to do that first time back in 1998. I remember holding that thing for several minutes, sweating as I tried to make myself press the button. These days, I don’t even think about it.

The ones they use for finger checks in the hospital, on the other hand, are the real-world equivalent of a gom jabbar from Dune. They’re one-size-fits-all, designed to pierce cave troll skin. Thankfully, mine’s adjustable, meaning the needle goes just deep enough to draw blood.

Diabetes syringes weren’t usually painful either. The needles are very thin. Every once in a while I’d hit a nerve or a blood vessel, which stung like hell, but that was the exception.

Getting the pump catheter into place … yeah, that hurts sometimes. It’s a slightly longer needle, and the spring shoots it in quickly to prevent the teflon catheter from kinking. I’d say about half the time it goes in with little-to-no pain, maybe 30-40% of the time it stings, and 10-20% of the time I shut the door so the kids don’t hear me swearing.

Beyond that, it’s been a fairly painless disease so far. Every once in a while someone at karate will forget and punch me in the insulin pump site, which isn’t fun, but it’s not crippling pain. More like getting whacked on a cut or bruise. And there are potential complications that could change things for me eventually — nerve damage being a big and nasty one. But considering this disease would kill me in days if I stopped treatment, I think the occasional painful jab to the belly is more than worth it.

I should point out that my experiences aren’t universal. Some people find the fingersticks very painful. (There are meters now that will let you test a blood sample from the forearm, which has fewer nerve endings to irritate.) I have a harder time with the pump than some people. I had to try several different styles before finding one that worked, for the most part, with my body. So take this as Jim’s Diabetes Experience, not The One True Path of Diabetes Pain.

Questions are welcome, as always.

Mirrored from Jim C. Hines.

Previous diabetes posts are available by clicking the diabetes tag.

I was diagnosed with type 1 diabetes on October 31, 1998.  That’s right, the day I learned my pancreas was a lazy quitter and I’d have to monitor my carb intake for the rest of my life, I got to make my way through a hospital packed full of Halloween candy for the other patients.

My father was diagnosed with the same thing when he was 24 and a half, midway through grad school, so I was familiar with the disease.  In October of ‘98, I was exactly 24 and a half years old, and was just starting my second year of grad school.  (My son is not allowed to go to grad school until he’s 25.)

The symptoms had started a few months earlier.  I started feeling a lot thirstier, and drinking much more.  Milk, water, orange juice … I even tried a few wine coolers.  (This brief period is the only time in my life I drank anything with alcohol.)

The trouble, though I didn’t know it, was diabetic ketoacidosis.  As my pancreas cut down to part time work and prepared for retirement, my blood sugar rose steadily higher, throwing my body’s pH out of whack and causing any number of nasty side effects.  My body kept trying to flush the crap out of my system, and to do that, it needed fluids.

Of course, the fluids I was drinking had a lot of carbs … which means my blood sugar just kept on climbing.  And all that fluid had to go somewhere, meaning I was constantly running to the bathroom, day and night.

In addition to the drink-n-pee cycle, my mood went downhill.  I was teaching freshman English at Eastern Michigan, and I remember ripping into one of my students I thought was disrespecting me.  When my roommate left his dirty dishes in the sink, I did them … swearing and slamming things around hard enough I’m surprised I didn’t break ‘em all.

Mom talks about my father going through the same thing.  She says she was relieved when he was diagnosed, because if he had continued acting that way, she wasn’t sure how much longer she would have put up with him.

I also lost weight.  A lot of weight.  No matter how much I ate, my pancreas wasn’t producing enough insulin to use that food.  I dropped from over 150 pounds down to about 130.  (For comparison, I was about 160 pounds in this picture.  130 on me is not healthy.)

When I finally figured out something wasn’t right, I headed home.  I went out to dinner with my family, then used my father’s glucose meter to check my blood.  Normal blood sugar is about 80-120.  The meter’s range went up to 600.  Mine was too high to read.

Dad said he had already figured out I was diabetic from the amount I drank that night, and how often I went to the bathroom.

The nice thing is that after I went to the hospital, I felt better within a day or two.  Insulin is amazing stuff.  I had no idea just how bad I had been feeling until I was better.

I’ve kept the disease under pretty good control for 12 years now, in no small part because I remember how miserable I was back then, and I have no desire to go through that again.

I’m very comfortable talking about the disease, so questions and comments are more than welcome.  (With the understanding that I’m not a doctor, and I can only talk about my personal experiences.)

For those who are interested, the American Diabetes Association has a list of diabetes warning signs.

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Insulin/syringe photo by starrynight.

Mirrored from Jim C. Hines.

Previous diabetes posts are available by clicking the diabetes tag.

People often make assumptions about what I can and can’t eat as a type 1 diabetic.  Here’s the thing: I can eat anything I choose … as long as I take the correct dose of insulin to go with it.  Therein lies the trick.

Diabetes Math 100: Introduction to D-Math

I try to keep my blood sugar goal between 70 and 140.  I’ve discovered that one unit of insulin drops my blood sugar about 60 points, so if my blood sugar is 200, I’ll program the insulin pump to give me 1.5 units.

With meals, you’re worried about glucose.  This means you primarily count carbohydrates.  I need to take about 1 unit for every 8-9 grams of carbs.

Pop Quiz: My blood sugar is 160, and I’m sitting down to a meal with 90 grams of carbohydrates.  How much insulin do I take?

I’ve also found that I need more insulin for my first meal of the day.  Closer to 1 unit for every 7 grams of carbs.  A 50 gram breakfast gets about 7 units.  So now there are two ratios to remember.  So far, so good.

Diabetes Math 200: Graphing Over Time

Those ratios are nice, but some foods are digested and absorbed more quickly than others.  Humalog insulin has a pretty stable absorption rate, peaking after about 90 minutes.  This can be a problem.

A number of factors affect the absorption of that meal you just ate.  Some things, like orange juice, get absorbed pretty darn fast.  Others, like pasta, can take a long time to absorb, especially larger noodles.  (Lasagna is a killer.)

The insulin pump is programmed to deal with this using a feature known as the square bolus.  Basically, you program two doses of insulin: one to be delivered immediately, and a second to be delivered at a steady rate over several hours.

Pizza has a pretty high fat/grease content, which also slows down absorption. So for pizza night, I’ve figured out the proper dose is around 6.5 units now and a square bolus of 10 units over 6 hours.  Lasagna is 2 units now, 6-7 over about 5 hours.  A piece of fruit?  1 unit now, no square bolus.

Diabetes Math 300: Multivariable Equations

Now things get exciting.  Remember those ratios we learned back in the 100-level class?  They don’t actually stay the same from day to day.  Here are some of the factors that can mess with your numbers:

• A good aerobic workout speeds up my metabolism and decreases my insulin requirements by 10% or so for up to 24 hours.
• Getting sick throws everything off, and usually raises my blood sugar, meaning I need 10-20% more insulin. (I can often tell I’m getting sick because my blood sugar starts to spike a day or so before any other symptoms.)
• Stress tends to raise blood sugar, though I’m told it can also lower it in some people with type 1 diabetes.
• When did I change my insulin pump?  If it’s the first 24 hours of a new set, the insulin absorbs better than it does on the second day.
• The insulin pump uses catheters that go into the belly fat, and occasionally those sites get irritated or build up scar tissue, which slows absorption.  Increase all dosages 5-10%.
• Finally, there’s the “heck if I know” factor.  Because sometimes your blood sugar still ends up at 250, even though you ate the exact same thing for lunch, took the exactly right dosage of insulin, and did everything else you were supposed to.

Conclusion: It’s not that diabetics can’t eat certain food.  But I’ve chosen to eliminate some things from my diet.  I drink diet pop instead of regular; I don’t usually drink milk; I’ll eat ice cream, but rarely.  Not because I can’t, but because eliminating those things from my diet reduces the number of variables and makes it easier for me to calculate my dosage.  Even so, those calculations are often a best-guess, and I’ll usually check my sugar 2 hours after a meal and adjust for any errors.

That’s how it works for me as a type 1 diabetic.  Questions are welcome, as always — I’m pretty open about this stuff.

Mirrored from Jim C. Hines.

• Book signing tonight at 7:00 at Nicola’s Books in Ann Arbor.  I’m sacrificing a tribble to the weather gods for a blizzard-free signing this time!

• This is why I shouldn’t be allowed to play with Photoshop.  I end up making LJ icons and escalating the plotbunny wars.  (Help yourself to the icon, if you’re interested.)

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I realized that after five diabetes posts, I had yet to talk about the basics of the disease.  Remember I’m not a doctor – everything that follows is based on my personal experiences and understanding.

For you non-diabetics out there, it works like so.  You eat food.  Your body breaks the food down into, among other things, glucose in your blood.  Your pancreas secretes a hormone called insulin that allows you to use that glucose for energy and keeps the glucose in your blood at a normal, healthy level (around 100 mg/dl).

There are two types of diabetes (three if you include gestational).  Type two is the most common.  Your body makes too little insulin, or else your cells aren’t able to use it efficiently.  A lower-carb diet can help, as do exercise and weight loss (your body might not produce enough insulin for 250 pounds, but could have enough for 175). There are meds that improve insulin absorption.   In some cases, you also inject insulin to supplement what your body makes.

I’ve got type one diabetes, which means my pancreas is a lazy bastard that quit producing insulin altogether.  Stupid pancreas.  For me, the treatment is black and white: I either take insulin or else my blood sugar rises until I go into a coma and die.  Type one is known as juvenile diabetes, giving folks the false impression that I got it as a child.  (I was 24 when I was diagnosed. My blood sugar was over 600 mg/dl.)

I started with injections, taking a long-acting insulin shot to manage my baseline needs and short-acting insulin at meals.  Because of the way I eat and live, I was taking 6 or 7 shots a day to keep things under control.  So I switched to an insulin pump, which gives me a baseline insulin rate throughout the day and allows me to give myself more at the press of a button.

When I eat, I guesstimate the amount of glucose I’ll be getting from that meal and take insulin to match.  I check my blood sugar levels about two hours after each meal.  Too high, I take more insulin.  Too low, I snack.  (If you see me acting drunk and confused, shove some carbs my way.)

What this means, among other things, is I can eat whatever the heck I want, as long as I take the insulin to cover it. I get cranky when people tell me what I can and can’t eat.  Yes, I had a donut yesterday.  I also took more insulin and checked my blood sugar an extra time.

I do adjust my diet somewhat to keep things manageable.  For example, I switched to diet pop because diet has zero carbs, meaning I can drink it without worrying about taking insulin.  On the other hand, when I was first diagnosed, I did extensive “research” to figure out exactly how much insulin I needed to cover a hot fudge sundae (2.5 to 3 units of regular insulin plus 1 unit of long-acting). So when you ask what I’m allowed to eat, the answer is anything I want, so long as I’m keeping the disease under control.

I was going to get into the consequences when the disease gets out of control, but this is getting long, so I think I’ll save that for next time.

I’m very open about all this, so feel free to ask questions.  You can also click the “diabetes” tag if you want to read any of my earlier posts about the disease.

Mirrored from Jim C. Hines.

Help please!  I need a small device I can use to make the “bleep” sound of censored swearing.  I’m hoping to do a reading of “The Creature in Your Neighborhood” at my book launch next week, but there’s one scene that wouldn’t be appropriate without the bleeping.  Any ideas on a device that might work?

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I debated whether to share this one, but I decided what the heck.  My ego can take it, and everyone can use a laugh on Monday mornings, right?

My insulin pump is a pager-sized device which contains a plastic vial of insulin.  It sends out a low base dose of insulin, and I can program it to deliver more as needed for meals and adjustments.  That vial is connected to a tube, which goes to a small catheter in the belly (or wherever else you stick it.)

Photo from Minimed (this is not Jim’s belly):

I use the 43″ tubing, which gives me plenty of … um … maneuvering room when changing clothes, etc.  Extra tubing gets tucked in, and life is good about 98% of the time.

Last week I had a 2% night.  I was getting changed for bed, and the tubing got tangled with my pants.  I didn’t realize this until it was too late, and the pants/tubing mess was tugging the catheter and sticker on my belly.

I couldn’t straighten up without ripping the catheter out.  (And there’s a sentence you don’t read every day.)  I tried to yank the pants back up, but they were binding my knees, and I started to fall.

Graceful as ever, I turned the fall into a hop.  My other foot came down square on the edge of the laundry basket, wrenching my little toe.  At this point, some primitive self-preservation instinct in my brain screamed Just surrender to the inevitable before you destroy half the bedroom hopping about like a one-legged kangaroo on an LSD trip!

I fell.  There was an earth-shattering kaboom.  My wife rushed out thinking … okay, I don’t know what she was thinking as she saw me sprawled on the floor, pants at the ankles, rugburn on one knee, still doubled over to protect the pump tubing, and clutching my throbbing toe.  I don’t want to know.  At least she was kind enough not to laugh too hard after she saw I was okay.

Grace?  Dignity?  I used to have these things, once upon a time.

This is the sort of thing they don’t warn you about when they’re teaching you how to use your insulin pump.

Mirrored from Jim C. Hines.

Like the first Diabetes Details post, I have no idea how many people will be interested in this, but I’m writing it anyway.  A few of you will be happy to know this one has zero needle-related content.

I’ve been using an insulin pump for about six years now.  Basically, the pump is a pager-sized device that provides a constant baseline flow of insulin into a small catheter in my belly.  I can also program an extra dose of insulin when I eat, or if my blood sugar is too high.

The problem comes about because I have to change that catheter every two days.  It’s held in place by a very strong sticker about the size of a Canadian Loonie coin.

Strong adhesive plus belly hair is a bad thing.  I finally got tired of waxing a round spot on my stomach every time I changed the silly thing, and have taken to just shaving the belly.  This is … strange.  But far less painful.

The other interesting (to me) aspect of changing out the pump is brought to you courtesy of my four-year-old.  If he knows I’m going back to switch things out, he’ll follow me and climb up on the bed.  There he’ll wait not-so-patiently for me to finish drawing insulin into the new plastic bottle.

You see the plunger on the end?  That’s how you pull insulin into the plastic bottle.  Once it’s full, the plunger unscrews, and the bottle goes into the pump.  At this point, my job is to attach the plunger to the old, empty bottle, which now becomes the Best Toy in the World, for about 1.2 seconds.  That’s how long it takes to yank the plunger back, creating that wonderful popping sound as he pulls out the bottom of the bottle.

Changing the pump is still a pain in the ass, but the enthusiasm of a four-year-old makes everything less annoying.

Mirrored from Jim C. Hines.

Brenda Novak’s auction for diabetes research will be wrapping up at the end of the month.  Looking at my two items, bidding has reached almost $100.  My thanks to everyone who’s bid so far.

Following mizkit’s lead, I think I’m going to up the ante.  Bidding on the book is currently at $23.  If that crosses the $40 mark, I’ll throw in a signed copy of The Faery Taile Project as well.

Critique of a short story or novel chapter
Autographed copy of The Stepsister Scheme

I’ve lived with diabetes my whole life.  My father was diagnosed type 1 when I was born.  I was diagnosed about 10 years ago.  I’ve seen how the technology has changed.  From glucose strips that had to be dipped in urine and color-matched for a very rough approximation of your blood sugar levels four hours ago, we now have meters that will take a drop of blood and give you a reading in 5 seconds.  I started out taking 6 or so injections every day.  I now have a pump that gives me more flexibility and only requires me to stab my own gut every other day.  (Though I do have to shave my belly … there’s always a trade-off.)

And compare that to 80 or so years ago, when diabetics had to sterilize their own glass and steel syringes, then sharpen the needle themselves.  And don’t forget to rub cotton along the needle to check for burrs.

It’s still a pain-in-the-ass disease.  I’ve been fortunate, and have so far kept mine under pretty good control.  But it would be awfully nice to cure the damn disease and be done with it.

If you’re interested in my own story, I posted about my diabetes last year, on the 10th anniversary of my diagnosis: Happy Diabetes Day!

Mirrored from Jim C. Hines.