diabetes

Five Days as a Pre-Borg (Diabetes Related)

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.

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In Which Taz the Cat Helps Me Change My Insulin Pump

Me: Time to change the insulin pump again.

Taz: SOMETHING INTERESTING IS HAPPENING IN THE BEDROOM HOLD ON HUMAN HERE I COME!!!

Me: Peels sticker and catheter off of my belly, removes vial from pump, sets the pump, vial, and tubing on the bed.

Taz: LOOK OUT! I WILL SAVE YOU FROM THE IMPROBABLY SKINNY SNAKE THAT WAS BITING YOUR BELLY!

Me: Fills new vial.

Taz: Excuse me, human, but the snake appears to have bitten my face.

Me: Removes sticker from Taz’s face.

Taz: Ooh, this looks like an expensive piece of medical equipment. But you know what it’s missing? A CATBUTT-PRINT!

Me: Removes Taz from my insulin pump.

Taz: You appear to be getting ready to jab a needle into your belly. I shall assist by RUBBING MY FACE ON YOUR ELBOW!

Me: Thank you. Pulls out new tubing and prepares to hook it up.

Taz: THE IMPROBABLY SKINNY SNAKE HAS REINFORCEMENTS! IMMA KILL IT FOR YOU!!!

Me: Dork.

Taz: Runs away for no particular reason.

Diabetes Details 13: The Sick

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!)

Diabetes Details 12: By The Numbers

On October 31, it will be fourteen years since I went to Sparrow Hospital in Lansing and was officially diagnosed with type 1 diabetes. (Tip: Halloween is a crappy day to become a diabetic.)

I’ve talked about the disease before, because yay education and knowledge! Those entries are available by clicking on the diabetes tag.

I thought it would be interesting to try to figure out some numbers as of the fourteenth anniversary of my pancreas calling it quits. As of 10/31/2012…

  • I will have tested my blood sugar approximately 28,000 times. (That’s 2800 times per finger.)
  • By the time I switched to the insulin pump in 2006, I had taken about 15,000 injections.
  • On the pump, I’ve switched sites about 840 times, rotating to different spots on my belly, and occasionally the hips.
  • I’ve worked with three different endocrinologists, one of whom I dumped because he was a prick, and one of whom left his practice.
  • The lowest blood sugar I can remember was when I was in grad school, not too long after the diagnosis. I was walking to a class and started feeling really fuzzy. By the time I got back and tested, my blood sugar was in the 20s. (Normal is around 100, give or take.)
  • The highest was the night before my diagnosis. I went out to dinner with my family, then checked my blood on my dad’s meter to confirm whether I was right about being diabetic. The meter errored out because it couldn’t read that high, which means my blood sugar was above 600.
  • Blood sugar as I write this blog post: 96.
  • I’ve had between 40 and 50 blood draws for labwork. (Most of which have gone very smoothly. Props to the Sparrow Lab on Pennsylvania.)
  • Best guess as to the total cost of medicine and equipment to keep me alive these past 14 years: $86,000.
    • $33,000 (test strips)
    • $8000 (lancets)
    • $18,000 (insulin)
    • $1000 (syringes)
    • $16,000 (insulin pump sets)
    • $10,000 (insulin pumps – 2)
  • Cost of the initial hospitalization, visits to the endocrinologist, pump education, and dietician, and miscellaneous labwork: I have no freaking idea. Let’s just call it “a lot.”
  • Average number of years this disease shaves off of my life expectancy: 5.
    • But screw that. I plan to live forever.
  • Number of additional years of life I’ve gained thanks to a century’s worth of research into insulin and diabetes treatment: 14 and counting.

All of which makes me very grateful to be in a position where I’m able to get reasonably good health insurance, as well as for living at a time when this disease is manageable, as opposed to being a death sentence.

A cure would be nice, and sometimes diabetes is a significant pain in the ass, but given the alternatives, I will happily keep jabbing my fingers and pumping insulin into my belly.

Progress on Codex Born

Diabetes Details 11: Doesn’t That Hurt?

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.

Diabetes Details 10: Peeves

Previous diabetes posts are available by clicking the diabetes tag.

For the most part, my diabetes is under control, and I don’t think about it much from day to day. I check my blood, drink diet instead of regular pop, and swap out the insulin pump every 2-3 days. It’s a serious disease, but doesn’t significantly interfere with my life.

That said, there are some annoyances…

1. Blood. I don’t mind testing my blood sugar, but when I change out the insulin pump, sometimes the site bleeds a tiny bit, and no matter how careful I am, I keep getting tiny smears of blood on my clothes. It happened again last night. I removed the old set and checked to see if that site was bleeding. It wasn’t. So I finished prepping the new infusion set for my pump, looked back, and there was a tiny smear of red on my shirt.

I swear my belly is taunting me. My blood cells are tiny Weeping Angels that only sneak out when I look away.

2. Insurance. This is not my U.S.-health-care-is-busted rant. But dealing with insurance companies can be annoying. Like when I was told they would no longer do 90-day supplies of insulin, and I’d have to go to 30-day supplies instead. Are you thinking I’ll suddenly stop being diabetic after a month, or just that it will be cheaper for you and the pharmacy to do all that paperwork once a month instead of once every three months? Then there was the time they switched providers for my pump supplies without telling me … or without mentioning that I had to call the new provider to give them my info, or else my supplies wouldn’t show up. D’oh!

In each case, I’ve been able to get things straightened out, and I’m grateful to have health coverage at all. That said, it irritates me every time I have to spend time clearing up stupid mistakes and miscommunications, or navigating nonsensical policies.

3. Food Police. One of my biggest peeves is other people deciding what I can and can’t eat. I know it’s usually well-intended, but please don’t. I can eat anything you can; I just need to take the right amount of insulin for it. I eat ice cream and cake and pizza and whatever else I want. I’ve chosen to stop drinking regular pop, and to eliminate a few things from my diet … but that’s my choice.

If you ask me whether I can eat or drink something, that’s great, and I appreciate the consideration. If you decide for me, I get irritated fast. Even when it’s well-intended, like bringing in brownies to work and saying, “I know you can’t have them, so I brought in a rice-cake for you!” I know my disease and my body better than you; I’ll decide what I should and shouldn’t eat.

4. Insulin Pump & Karate. I love having a pump. I’m getting a new one soon, actually. I love that I no longer have to take 6-7 shots per day.

I do not love the fact that I have to clip the thing to my belt in karate, or that I have to warn everyone I practice with not to hit my infusion site, or that the silly thing sometimes slides around my belt, so I have to make sure it hasn’t moved before I roll to the ground or something.

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None of these are huge problems, and I’ll certainly take the peeves over the alternatives. But the disease comes with annoyances, even when it’s well-controlled, and since I hadn’t done a diabetes post in a while I figured I’d share.

Questions are very welcome, as always.


Insulin pump photo by Medtronic.

Diabetes Details 9: The Diagnosis

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.


Insulin/syringe photo by starrynight.

Diabetes Details 8: The Damage

Previous diabetes posts are available by clicking the diabetes tag.

My father has had type 1 diabetes for 36 years.  A long time ago, I remember him talking about the disease, saying it was strange to know what would probably kill him.

When your Dad says something like that, it sticks.  When you’re diagnosed with the same disease years later, those words come back again loud and clear.

Of course, these days we’re better off, with five-second glucose tests, insulin pumps, and the first generation of continual glucose monitoring systems (for those with good health coverage and access to such things).  I’ve been able to keep my diabetes under pretty good control for more than a decade.

With the standard disclaimer that I’m not a doctor, I’ve seen what uncontrolled diabetes can do.  I used to play racketball with a man who lost his foot.  My mother donated a kidney to a family friend who was on dialysis.  My father has good control, but has lost a little sensation in the fingertips.

In some ways, I think of diabetes as a video game.  A serious game, but a game nonetheless.  The object is to keep my score (blood sugar) between 70 and 140.  Use food, exercise, and insulin to stay within the bounds (and don’t piss off the diabetes fairy on level six).

When the score dips below 70, I start to get into trouble.  Low blood sugar (hypoglycemia) is an immediate danger.  I sweat and feel shaky.  My brain gets a little fuzzy.  I’ve never been drunk, but I imagine it’s a bit like this, with confusion and loss of coordination, not to mention some mood swings.  If it gets worse, you can have seizures, slip into a coma, and die.

Hypoglycemia can hit fast and hard.  I usually feel when I’m getting low, and can scarf the nearest convenient source of glucose.  (I keep a candy dish on the bedside table.)  But if you go low too often, you can start to lose that awareness, which is both scary and dangerous.

Whereas hypoglycemia hits fast and hard like a barbarian, high blood sugar (hyperglycemia) is the ninja of diabetes.  My blood sugar can creep up to 200 or more without me noticing, because there’s no immediate effect.  But in the long term, the ninja will Mess You Up.

High blood sugar can damage the eyes, kidneys, nerves, heart … it’s nasty.1  Sugar-laden blood cells rip up the tiny blood vessels of the eye.  Nerve damage causes loss of sensation on peripherals, so you might not notice that infected cut on your foot until it spreads.  And diabetics tend to heal slower…

In the meantime, high blood sugar paradoxically means your body isn’t able to use the sugar in your blood, so you begin to rapidly break down fat for energy, releasing toxins into your system. This can lead to a condition called diabetic ketoacidosis.  It’s an effective way to lose weight … if you don’t mind killing yourself.  (I dropped 30 pounds before I was diagnosed.  I don’t want to know how long it took for my system to recover.)

Brief soapbox: I’ve known people who deliberately went off insulin in order to lose weight.  That’s right, we’re so freaking obsessed with weight loss that poisoning killing ourselves is an acceptable way to drop a few pounds.2

High blood sugars don’t generally kill you right away.  If I go to a con and enjoy cheesecake after diner, my sugar might hit 250 a few hours later.  But I test often at cons, allowing me to bring it down pretty quickly. My HBA1C, a long-term average measure of blood sugar, usually comes back around 6.0 (upper normal).  Even though I have the occasional spike, my overall control is pretty darn good.

Perfect control isn’t possible yet, but I don’t plan to let this thing kill me.  Taking care of the disease is a pain in the ass, but it’s far, far better than the alternative.

Comments and questions are welcome, as always.

  1. And for some reason, if I’m too high, I start to get pimples.  Damn pimple ninjas.
  2. It was pointed out that ketones aren’t actually a toxin, but that they mess up the body’s pH and cause a number of other nasty side effects.

Diabetes Details 7: Doing the Math

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.1
  • 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.

  1. I can often tell I’m getting sick because my blood sugar starts to spike a day or so before any other symptoms.

Criminal Minds on Diabetes

From this week’s episode of Criminal Minds, “The Uncanny Valley”:

“Diabetics metabolize everything they consume differently.  Food, drink, drugs … it all gets broken down into blood sugar.”

Ignoring the fact that not all food and drink gets broken into blood sugar (Coke Zero, anyone?), you’re telling me my drugs all turn into blood sugar too?  Guess I’d better start taking insulin with my cholesterol pills from now on.

The show also asserts that diabetics can metabolize drugs faster, and thus our victim could shake off the paralytic.  (Which was being received via an I.V. drip.)  This struck me at first as either poorly researched or poorly explained.

So I spent this morning digging up research so as not to come off as an idiot when I wrote my rant, and what do you know.  I came across a 2007 study from The National Institute of Diabetes and Digestive and Kidney Diseases which states:

In fact, type 1 diabetes not only leads to activation of drug metabolic genes, but also has a profound effect on the metabolism of certain drugs. Mice with induced type 1 diabetes rapidly clear their systems of a compound that induces temporary paralysis, while normal mice cannot.

From that same article, “Controlling the diabetes reversed the effect: when insulin was given to the mice, the CAR-induced genes turned off. “  So in theory, since this woman was off her insulin, there might have been a window where she would have thrown off the effects of the drugs before falling into a diabetic coma.

I’m not finding anything to support the idea that drugs all break down into blood sugar, though.  That one still strikes me as goblin dung.  According to the article above, a diabetic with out-of-control glucose doesn’t clear the drug by breaking it down into sugar, but because (in mice, at least) this activates certain genes that clear the drug from the system.

So, I’m cranky about the “Everything turns into sugar” bit, but it looks like they did the research on the rest.  Thanks for that, Criminal Minds — the widespread laziness and misinformation spread in most books and shows when it comes to diabetes is a huge peeve of mine.

On that note, if any of my writer friends are ever doing a story that includes diabetes and have questions, please don’t hesitate to ask.  I’m not a doctor, but I can give you the basics and tell you what it’s like to live with the damn disease.

Also, I think I have a man-crush on Dr. Reid.