Here it is: the last day of this year’s Diabetes Blog Week. It’s been a good selection of topics, and I’ve enjoyed reading everyone’s posts. Today, we talk about heroes.
I’m going to confess that I don’t really have any heroes. Some people do fantastic things that need to be shouted from the rooftops, and there are nonprofit groups and NGOs who do the amazing, selfless work that’s the traditional domain of heroes. But being a “hero” is a big ask for anyone.
With that caveat, I’ll say this: I really admire all the athletes of Team Type 1 and the idea behind the team. The cyclists, runners, and triathletes—some of whom are among my very best friends—are such inspirations. They show that it’s possible to do the same amazing feats of athletic derring-do with diabetes that people without it can do. After I learned about them, I bought one of their (older) jerseys, and I wear it often to represent for my peeps.
Today in Diabetes Blog Week is snapshot day. Last year I had a lot of fun with this when I was in DC. This year, I’m being a little more traditional.
Friends, I have been having the worst period of prolonged high blood glucose that I can remember. All the “rules” are wrong; nothing is working the way it should. Basal rate, bolus ratios, the effects of exercise—they’re all messed up. There could be any number of reasons: ineffective infusion set locations, lower training volume or intensity than before, no longer being overtrained and in glycogen debt, different eating choices, bad insulin, etc. Who knows? The result is that last night my 7-day average of all readings was 199 mg/dL (11 mmol/L). I don’t think it’s been this high since I was discharged from the hospital when I was diagnosed.
I’m working on figuring everything out again, almost from scratch. These snapshots are all from today, which was full of a lot of things that lowered (and occasionally raised) my blood sugar.
(You can click on any picture for a larger version.)
Today started with a interval workout on the track that actually raised my blood sugar. I’ve been using a foam roller to help keep my IT band in check, since it’s starting to feel a little injured.
After my run, a little stretching and the foam roller.
This is how Kitty spends the majority of his day.
Since I was still high, I decided to bolus and mow the lawn. I was wearing my heart rate monitor from my run, and I checked in from time to time. 120 BPM to mow the lawn. Ha!
After my run, it was time to mow the lawn.
Our irises are going gangbusters this year.
After lunch: housecleaning. It always lowers me a bit (supposing I bolused enough for lunch).
The carpets needed a good hoovering.
After vacuuming, it's time to clean the dining room.
Usually the vacuum cleaner makes him run for the hills.
Meanwhile, Lisa was doing battle with the shrubbery.
Lisa needed a tall person.
Different piece of furniture, same result.
Time to take the clippings to the transfer station
It was a warm day. That calls for ice cream before doing more housework! (Of course, we’ve also been known to go to the ice cream shop during a snowstorm.)
A Treat after all that yardwork
The office needs a good going through.
Lots of bike riding recently
I’ve been jonesing for a long bike ride for quite a while. Tomorrow is the day. We’ll see if that can’t knock these highs down a bit.
Tomorrow, I'm going for a little ride. Maybe that will help.
Wow, time has flown by! Diabetes Blog Week is almost over. Today’s prompt: “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”
I feel like I should have something profound to say here, as if after almost thirteen years of diabetes—has it really been that long?—I should be some kind of sage. But when it comes down to it, living everyday with a chronic illness renders it rather banal.
Doing all of the diabetes things (checking the blood, using insulin, changing infusion sets, looking at CGM graphs, being mindful of all the factors that affect blood glucose, and doing so many other activities) becomes just another part of living. It’s an unwanted part, to be sure, but those of us living with the disease integrate it into the fabric and rhythms of our life because we have to. Sartre and Camus would remind us that we’re always making choices, but practically our options are severely constrained when it comes to either accepting this disease and making it part of who we are or deciding to ignore it and face the consequences.
What this means is that we live life in multiple ways. We have the “normal”/”healthy”/non-diabetic portion with jobs, commutes, families, hobbies, and obligations, not to mention anxiety, joy, boredom, failure, and success. And then we have the part where we pick up the slack for our malfunctioning endocrine systems. This brings its own tasks, obligations, diversions, emotions, friendships, and opportunities to be better than yesterday. Diabetes is just another “thing” that we do. And like other things in life, sometimes it’s surprisingly easy, while other times it’s cruelly difficult. Sometimes we use these challenges in life and diabetes as a springboard to transcendence, and other times we just can’t wait for them to be done so that we can say, “Well, that sucked. Let’s never fucking do it again if we can help it.”
Diabetes just is.
It’s an aspect of my life that I manage (or mismanage) like any other part. Could I have better BG numbers and be less afraid of insulin? Yes. Could I also sleep more, floss regularly, and worry less? Yes to all. Do I mostly do alright with the diabetic and nondiabetic parts of my life? Absolutely. Diabetes isn’t a separate thing from me, but it is also not an essential, defining part of who I am. Just as I would never say, “I’m a toothbrusher,” it seems ridiculous to assume that my diabetes shapes the essence of my life any more than my toothbrush. I would rather say that I’m a husband, a software engineer, a triathlete, and an international playboy, and I just happen to do all of these things with diabetes.
That’s what I would say to people with or without diabetes: This illness is just another part of life, so don’t expect it to be our top priority or our defining characteristic. There’s more to us than that. It is, nevertheless, an important part of our lives, and it’s going to have an impact on what we choose to do and how we do it. Occasionally, it’s going to mess everything up. Try to be as Zen and thoughtful in your acceptance of this part of us as we are trying to be ourselves and as you would be of any other aspect of our lives.
“Stuff” is one of the evergreen topics of diabetes. What we use, the features we would like from pharma, and why we don’t have the amazing toys yet—we never seem to get tired of discussing it. Today in Diabetes Blog Week is the day that we talk tech, in particular our “fantasy diabetes devices.”
I think you can divide fantasy devices into (at least) two broad categories: (1) things like what we have now, and (2) things that act like an endocrine system. I’d love the latter, with its promise of a system or implant that behaves like a pancreas and gives us back normal glycemic response without any work. It’s going to take a while before we have replacement beta cells that don’t die . . . or CGM sensors that are accurate enough to make life and death decisions without our input . . . or control system algorithms that can handle all of the crazy variables that go into blood glucose.
So I think we’re on our own for a while longer, and we will need devices that help us make better decisions. I’ve said it before: we generate so much data that never gets used, and I’m sure that device manufacturers could build more decision-support, trend-spotting, and CDE-like functionality into our devices. And these devices should all talk to each other using standard, open protocols (like ANT+) so that they can integrate with all kinds of other devices—like my Garmin bike computer or running watch—and third-party software, which I would totally write if it were easier to get at the data.
Ideally, these decision-support systems would remember what’s happened over a long, ever-growing history, know what’s happened earlier in the day, and give suggestions about what to do next. The less work that I have to do the better.
After starting with the good news yesterday, today in Diabetes Blog Week we look at the flip-side: What could be better? What could we start doing today to make it better?
Friends, I am very good at spotting possible trends in my BG readings. Yesterday, I reported how morning swims are almost always amazingly consistent BG experiences. I have also noticed that I go up most afternoons around 2:00 and then drop a bunch during my afternoon workouts. I’m observant enough to have seen that evenings are higher than mornings. And I believe that I fall slowly overnight before going back up a bit before dawn. Some of these trends are good, others less so, and some just are what they are.
(Recently I’ve also been noticing more trends like the one shown below: awesome trend lines reported by my CGM. That 7:00 bolus there is for pizza, my friends. Half of a large pizza.)
What I’m not good at doing is acting on those hunches. When I suspect a pattern, I could should make detailed observations, adjust a few things, and test whether that made it better. But I don’t. Well, I do, but it takes longer than it should. (I also forget to write down the awesome things that worked, and I sometimes have to start over from scratch.)
“Why?” you might ask.
I believe some might call it “procrastination.”
“But that’s not a reason,” you say. “It’s likely just an effect of some kind of disordered thinking. Why not make the changes?”
Because, my dear friends, it’s hard to make changes to something that (mostly) works, that keeps away the lows and lets me exercise when I want with (mostly) good results. Because it’s hard to fiddle around and possibly make things worse. Because starting to make changes like that requires an active commitment to start, and I just haven’t carved out the time to do the basal testing (again!) or kept up with my BG+food+exercise journaling. Because, despite having done my NPH exorcism almost two years ago, that fear of the lows is still very much with me, and getting closer to the good place means getting closer to the edge of hypo more often. (At least I tell myself that, even though I’m not convinced it’s true.)
But today is a new day, and it’s the day I can stop procrastinating on these trends.
Today in Diabetes Blog Week we’re talking about the things we do spectacularly. I’m not a superstitious man—except for throwing spilled salt over my shoulder—but I’m keenly aware of hubris or karma or whatever you call being too sure of yourself. I’ll do my best to get past it for today’s post’s sake.
Yesterday evening on the way back from the grocery store, I asked Lisa what she thinks I do very well when it comes to diabetes. Her answer—after saying that I’m often too hard on myself about diabetes, “which is understandable because it’s difficult”—was this: “You’re really good at exercising with diabetes. You do it a lot, and you’re not hypo all the time afterward. So I guess it’s that.” Then she asked if I’d read the post from Kerri about the elliptical and lows and juice boxes and whatnot. (I admit, I had a moment.)
So, I guess it would have to be that: exercising. In particular, I’d point at swimming. My stupid-high BGs before the triathlon Sunday notwithstanding, swimming is usually the easiest and most predictable thing I do with diabetes.
I get up at 5:00AM. I set a temp basal rate for 0% for 1.5 hours. I swim from 5:45 to whenever (usually 30-40 minutes). I go back to my locker and silence the “OMG!! THE SENSOR SIGNAL IS WEAK. WEAK!!!1!! I’VE LOST MY SENSOR! IT’S SOOOO LOST! WTF AM I GOING TO DO??!!!?” alarm on my Minimed pump. Get ready for work. Test. Deliver 1.0 units of insulin or so. Drive to work. And have a perfect-ish BG morning.
If I’m below 130 beforehand I’ll have a little snack. Otherwise, it’s like a little early morning gift delivered three times a week.
I can only imagine the internal body dialogue that might be causing this night swimming pre-dawn / early morning swim phenomena:
Human Growth Hormone: Yo, Epi, are you awake?
Epinephrine: YES! I’m always awake. And I’m amped and ready to go. What do you have in mind?
HGH: Let’s go wake up Liver and see how much glycogen he can spare.
Epi: YES!
HGH: Hey, Insulin. ‘Sup? Your blood sugar?! Haha. I’m just teasing. Seriously, though, WTF man? You just keep chillin’ for a little while longer. Epi and I have some unfinished business with Liver.
Insulin: Wait . . . what? Oh okay. I guess I’ll just stay here for a little while. Um, guys. Am I disappearing?
It’s Diabetes Blog Week again . . . yay! The last couple years were great, helping me meet so many wonderful people online with diabetes (POWDs?). Once again, Karen has done a fantastic job creating the topics and organizing the logistics. Kudos to her! Today’s topic invites us to “find a friend”—or rather, to share a friend with you, the reader.
I have met so many wonderful people with diabetes through their websites, Twitter feeds, and Facebook posts, that I don’t feel right naming just a few names. I have been fortunate enough over the last 18 months to meet several of these wonderful people and even call some of them my very best of friends. They’re not just people who really get diabetes and are there to share the triumphs, disappointments, and everyday shenanigans that is blood glucose. No, they’re also wonderful people with lives and interests and passions, and they’re most interesting (to me) when they share those other, “normal people” parts.
There are, however, a few people I read everyday because (a) we’ve met in real life, had a wonderful time, and grown close afterward, (b) they post several times a week, and (c) if I miss a post, I’m missing out on what’s going on in my friends’ lives, the same way that I would if I’m on vacation and cut off from the normal connections that bind friends together. That is to say, there’s no difference between these Internet friends and the ones across town; we just communicate differently. So Céline, Jess, Kim, Scully, and Victoria, here’s hoping others get to know how awesome you are. (And Caroline, I would totally put you in this group, too, if only you posted more often. :^) [Update 23 May 2012: Oh! Here it is!])
There’s someone I’ve never met in person and whom I’ve only just recently started following online. I think y’all should give her posts a look. Scully introduced me to her fellow Team Type 1 rider Becky Furuta’s awesome blog, Avec Délectation. (Don’t worry, ‘Mericans; it’s at least 99.44% English.) She’s smart and funny and thought-provoking. Her posts prompt me to think differently about diabetes . . . more matter-of-factly, more holistically, more—I dunno—post-hippy-Boulderite-like. If that’s not a good enough reason for having the Diabetes Online Community around, I don’t know what is. Oh, she also likes pounding diabetes into the ground as she rides her bike fast. She’s my kinda gal. One day, we will have to meet.
In case you didn’t know: I’m in DC. I drove down here yesterday (Friday) to see a major Gauguin exhibit at the National Gallery of Art and to see some people from the diabetes community. Both experiences were really great.
I went to a few other museums in addition to the NGA, and it struck me that the people in the paintings and I had a lot of the same things on our minds. (I recommend clicking on the first image so that you can see all of the “What They Were Thinking” captions.)
Technically, it’s still Friday, so I still have a chance to be legit with today’s Diabetes Blog Week post about . . . what’s this? Diabetes and awesome?
There are a lot of thoughts on my mind recently about diabetes and something in the neighborhood of “awesome.” But as for actual awesome, the only really legit thing is meeting a whole bunch of really great people. For example, take this fantastic couple:
Carrying extra crap. Because I got the ‘betes, I don’t get to travel light. And I don’t get to wear running shorts without pockets, because I gotta have place on the long runs for the pump, glucose tablets, meter, and energy gels.
Being woken up in the middle of the night (more than once thrice) because my BG is high, I’m going low, or my pump is lonely and will not be ignored.
Not being 100% confident that I’ll get the chance to let my BAMFness express itself fully when I’m racing.
That tiny, hissing, malevolent voice in the back of my head that says every choice has a downside and that I might not be making the best choices to bring my A1c down or to hold off complications.
Spending money on test strips, insulin, glucose tablets, copays, and so on.
Orange glucose tablets.
Not being able to eat something delicious when I’m hungry because my BG is high.
The concern that I cause I other people.
Not being free to exercise anytime I want.
How difficult it is to figure out anything that involves more than one variable (such as balancing nutrition, active insulin, and exercise).
Gushers:
But since I don’t really like focusing on the negatives, let’s balance this post out by listing ten eleven of my favorite films:
Today’s Diabetes Blog Week topic, diabetes bloopers, should make for some good reading. Here is my “man hit in groin by football” contribution. (BTW, this post contains videos that might not show up in your RSS reader. You might want to visit the page directly.)
I make a bunch of diabetes mistakes. (I know, I know. No stop; it’s true.) Mostly they’re miscalculations based on too little information or because I’m too busy/distracted/asleep to put the effort into getting things “just right.” Sometimes this causes me to have hypoglycemia and say ridiculous things, but mostly my life is pretty boring. (And that’s not always a bad thing.)
Occasionally, I make a big mistake or one of my devices malfunctions. Those are the real bloopers. Usually, they’re pretty tame and good for a “you’ll never guess what happened to me” story, but every so often one turns into a slow-motion, should’ve-seen-it-coming disaster.
This is one of those tales.
Those of us intimately familiar with the Medtronic Minimed Paradigm insulin pump know that it has an insulin-filled reservoir with a plunger at one end and tubing at the other. The tubing connects to our body, and the plunger is pushed by a very finely tuned stepper motor that pushes (usually) small amounts of insulin into our bodies.* Every few days, the pump has pushed all of the insulin into the body, and it’s time to change the “consumables.” That process goes something like this: disconnect the pump tubing from the body, rewind the motor, put in a freshly filled reservoir, start a “manual prime” to fill the tubing with insulin, insert a new infusion set into the body, attach the new tubing to the new infusion set, and give a very small “fixed prime” to finish the process.
As you can see, there are a few steps. If you do this enough times — about 100-150 times per year — you get pretty proficient. You can do it quickly in a variety of settings: at home, at the office, in the passenger seat of a car driving down the Kansas Turnpike, in a terminal of the Oakland airport, etc. In fact, it gets so routine you might be tempted to not think about it too much or to cut some corners. Which is usually fine.
A year or so after I got my first Minimed Paradigm pump, it started to have a problem. As noted above, there are two priming steps: “manual prime” and “fixed prime.” The manual one starts the motor moving rapidly toward the plunger and then continues more slowly after a sensor detects the initial contact. A typical manual prime moves about 20 units of insulin to fill the tubing. None of that prime goes into me initially. The fixed prime fills the space left by the starter needle and is only 0.3 units, which goes straight into the part that’s attached to me. It does this so that the next the motor steps, the insulin actually gets delivered and I can get it’s blood sugar-lowering goodness.
The problem with my pump is that the motor wasn’t detecting that it had made contact with the plunger. Can you see where I’m going?
On that day years ago, while changing my insulin and infusion set at the office, I started the manual prime like normal — that is to say, with the pump completely disconnected from my body. After seeing insulin drip (or rather spray) out of the end of the tubing I attached the tubing to my body and (by habit) pressed the button that should have delivered 0.3 units of fixed prime.
Instead, I heard a whirring of the motor as it delivered a whole bunch more insulin. I looked at my pump and saw that it still said “Manual Prime.” After disconnecting, I estimaged that I had given myself somewhere between 15-20 units of insulin, enough for about 150-200 grams of carbs, or about 1/3 to 1/2 of my daily dose at the time.
The good news is that I was ultimately unharmed by this adverse incident, and I had a new pump the next morning. But at the time, as I was drinking glass after glass of orange juice at my kitchen table with my meter next to me — having quickly driven home to be near new pump supplies, my refrigerator, and Lisa, not to mention a fire station full of first-responders just down the street — I made myself a promise that I’ve kept to this day: “I will never again attach the tubing to the infusion set before I see the flashing words ‘Fixed Prime 0.3u.’”
* — The pump bone connected to the reservoir bone. The reservoir bone connected to the tube bone. The tube bone connected to the infusion set bone. The infusion set bone connected to the skin bone. The skin bone connected to the fat bone. The fat bone connected to the blood sugar bone. . . .
I’m of two minds about today’s Diabetes Blog Week topic. Part of me wants to take it very seriously and write a letter to my 24-year-old, post-diagnosis self, telling me to be as active a participant in my treatment as I can be, to get off the NPH as soon as I leave the hospital, to get myself on an insulin pump much sooner, and (most importantly) to give myself all of that proof from the last few years that diabetes doesn’t have to slow me down at all very much. That would be the inspiring thing to do. But instead, Imma give you KANYE.
YO, DIABETES! KANYE HERE. ME AND MY GIRL LILO ARE HERE TO DROP A TRUTH BOMB ON YOU! AND YOU GOTTA RESPECT WHAT WE’RE SAYING CAUSE KANYE AIN’T PLAYING. (BTW, DON’T MIND WHAT LINDSAY SAYS, SHE’S JUST PASSING THROUGH ON HER WAY TO REHAB.)
NOW, DIABETES, I KNOW YOU’RE JUST BUGGING ALL THESE HARD-WORKING PEOPLE BECAUSE YOU DON’T LIKE THE FACT THAT DIABETIC AMERICA WANTS TO PAY MORE ATTENTION TO ME THAN TO YOU. I GET THAT THEY WOULD FEEL THAT WAY. MY MUSIC ISN’T JUST MUSIC — IT’S MEDICINE. THAT’S A LOT OF PRESSURE FOR ONE HUMAN BEING (BUT I CAN HANDLE IT). AND I KNOW WHERE YOU’RE COMING FROM, TOO, DIABETES. IT’S HARD TO BE AROUND SUCH AMAZING GREATNESS LIKE ME AND ALL OF THE PEOPLE WITH DIABETES. BUT EVERY MINUTE THEY SPEND WORRYING ABOUT YOU IS ONE THAT THEY CAN’T SPEND THINKING ABOUT WHAT THEY REALLY WANT OUT OF LIFE AND HOW TO GET IT.
SO YOU JUST NEED TO RELAX, DIABETES. MAYBE PUT ON “808s” AND JUST CHILL. LEAVE KANYE’S AMERICA ALONE. MUCH LOVE.
AND YOU IN THE MEDIA. SHUT THAT PIE HOLE YOUR MAMA GAVE YOU!
It’s Diabetes Blog Week again . . . time to write about diabetes each day for an entire week. Once again, Karen has done a fantastic job creating the topics and organizing the logistics. Kudos to her! Today’s topic touches on the differences between the various kinds of diabetes and the people who have “it.”
Hi, everybody! I have type 1 diabetes. It’s the kind where my pancreas doesn’t work so well because it was eaten by a velociraptor — I mean it was attacked by my immune system. I think, technically, I have LADA (“latent autoimmune diabetes in adults”, a.k.a. type 1.5) since I was diagnosed at age 24, but I’m not 100% sure, because there seem to be only two categories to pigeonhole me into on all of the forms. That “.5″ seems to really throw the medical establishment off. And not just them. I’m still a bit fuzzy on T1.5; in fact, I had to use the Google to find out what the LADA acronym means. (“Latent autoimmune deficiency . . . uh, no that’s not right.”)
LADA is something I’ve been meaning to ask my endocrinologist about for quite a while, but we’ve always been too busy trying to figure out ways to tweak my insulin dosing to help me get my A1c down, and we run out of time to get to more esoteric conversations like this: “So, uh, what exactly am I sick with?” I’ve heard anecdotes from other T1.5 people that there might be different treatment options than the “normal” T1 folks who were diagnosed as kiddos, so it’s definitely worth checking out, but I kinda hope that if there were major changes that one of my endos would have taken advantage of it. You never know.
So usually I just put myself in the T1 tribe. We speak the same language as the T2s and share many of the same customs, but we’re different enough to be distinguishable. I asked a while back for T2s to tell me about their experience with the ‘betes, and I’m still interested in learning more.
. . . Fortunately, we have today’s prompt to help me know my fellow peeps better.
Diabetes Blog Week finished Sunday. I really enjoyed being part of this, writing my own posts and (especially) reading other people’s contributions. I’m giving a huge “Thanks!” to Karen for coming up with the idea for this village green experience and for providing the essential scaffolding that the rest of us were able to use. It really made participating easier.
It’s wonderful to have a place — virtual though it may be — where people understand what I’m talking about on a deep level.* Because so many of us were conversing on the same subject on a daily basis, I found it much less isolating than the usual “I’m going to talk about diabetes now” experience. And I especially enjoyed the honesty that was possible when we were writing for each other; I didn’t feel like I had to have all my shit together before talking about my disease. (It often feels easier to talk to people with working pancreases, if I just pretend that I do — whether or not that’s the case.)
In fact, I think I finally get the real value in the diabetes online community (DOC). In the past I’ve tend to visit the DOC to get information that I felt could help me manage my illness better. But having read so many posts over the last week, I find myself thinking about it as a place that’s primarily about sharing other people’s experiences, talking about my own, and just being present. Certainly, I’m going to keep trying to learn as much as I can from the same sources as before, but being able to get extra perspectives has a ton of value in itself.
I wonder if you feel the same way, too. And I hope that if you’ve been reading me for the first time over the last week, you’ll stick around. Big things are going to happen in the coming weeks that you might want to read about — for example, we’re going to Australia for a month — and I’ve been enjoying all of your comments.
Now here’s the scary part (for me, at least). I want all y’all from the DOC to stick around, but I’m not primarily a “diabetes blogger.” I have a lot of stuff on my mind: diabetes, the US healthcare system, travel, photography, New England cemeteries, and a bunch of stuff that’s more like work than fun. (That last chunk of stuff actually comprises the majority of the traffic to my site, if not the majority of what I write about. . . . Go figure.) And I use this space to post on all of those things. Unless you’re actually me, some of my regular topics aren’t going to be your cup of tea.
So let’s make a deal. If you stick around and ignore the non-diabetes posts that don’t interest you, I promise to give you something worth reading more often than not. Just add me to your RSS feed reader or stop by regularly. Deal? Good.
. . . And now it’s time to put this new relationship to the test. I’ve been sitting on the next two posts (people’s exhibits a and b) for the last week so that they wouldn’t get in the way of your Diabetes Blog Week reading. It was enjoyable, but my! wasn’t there a lot of reading?! And I just didn’t want to add to that.
See y’all again soon!
* — I’m reminded of the time that I accidentally happened upon a little people’s convention in the late 80s in Des Moines, Iowa. Lots of people who are usually “the other” were running around doing their own thing in a supportive community. I felt like the odd one out. In the DOC, we’re on the inside.
I am not a doctor and do not have any medical training. Your diabetes may vary. You should always check with your health care team before making any changes to your diabetes self-management or exercise regimen.
