diabetes

20 Years of Diabetes

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.

Diabetes Upgrade: New Pump and CGM

 

After several months of back-and-forth with the insurance company, medical supply company, and my doctor’s office, last week I went in to get set up on a new Minimed 670G insulin pump. The thing I’ve been really excited about is that this pump links to a continuous glucose monitor (CGM).

For the past 20 years, I’ve checked my blood sugar by pricking my finger about six times/day and putting a drop of blood onto a test strip. The CGM checks every five minutes, and gives me something close to a real-time graph showing my blood sugar levels and how those levels are changing.

I still need to do the finger-pricks, since the CGM isn’t quite as accurate, and needs to be calibrated. But this means I get much quicker warnings if my sugar starts to go high or low. It also gives me a lot more data to better refine how I take insulin to keep things under control.

Ironically, this came up as I was working on this blog post. I think there was an issue with the site where I plugged the pump into my body, which was causing me to not absorb insulin as well as I should. As a result, my sugar was high. It’s currently 255, to be exact.

670G Insulin Pump

Thanks to the CGM, I’d been alerted that it was going high, and had been able to monitor the rise and decide to change the set. Without it, I’d have waited until my next finger-prick.

You can see I’ve already come down a little bit from the peak when I changed my site. Theoretically, that line should keep coming down until it gets into the green-shaded area between the two horizontal red lines.

The only problem so far is that I tend to overreact. It takes time for the body to process insulin or digest and process food. If I take insulin now, I won’t see an immediate effect. Likewise if I eat, say, a chocolate bar, it could be 15 minutes or more before my sugar starts to rise. So if I’m high, I might take a correction dose of insulin. Ten minutes later, I’m still high! What the heck? So the temptation is to take another dose. Unfortunately, “stacking” insulin like this can result in an overcorrection, and suddenly my sugar is too low.

But I’m getting used to it, and I haven’t had any severe problems.

The other inconvenience is I now have not one but two things plugged into my abdomen: the insulin pump site, and the CGM sensor.

Warning: pale belly pics behind the cut.

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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. And for some reason, if I’m too high, I start to get pimples.  Damn pimple ninjas.]  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. 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.]

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.

Jim C. Hines