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.

In my heart, I want to be one of them.

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?

Epi: YES!

HGH: Hey, Liver. Wanna go swimming?

Liver: Let me grab my towel.

Epi: SWEET!

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.

This morning I competed in the same race, the NE Season Opener in Hopkinton. What a difference a year makes!

Last year I did the 1/4-ish mile of swimming, 10 miles of cycling, and 5K of running in 1:16:34, good enough for 171st of 366. This year: 1:08:57, or 131/438.

As a “newbie” registrant in 2011, we had our own special start time and apologized for bumping into each other during the craziness that was my first open-water swim. This year, in the biggest starting wave, it was all fists and kicks for the first 30 seconds until we got ourselves sorted out. (Next time: start farther out.) I found some feet to draft off through the 58ºF water, did a great job sighting with my optically-corrected goggles, and was surprised at how fast it was over. In fact, it wasn’t until I was about halfway through that I realized my form kinda sucked and that I needed to remember what I usually do in the pool. “Ah right! Less flailing more pulling.” Still, I was almost three minutes faster this year.

Ah, the bike! After a relatively fast transition, I hopped on Speed Junkie (my Cervélo P2) for my first race on it. I must confess that I was nervous in the days leading up to the race. How would I do around other people? Would I be able to spend most of the time in the aero position? Would I be as fast on the bike as I had hoped, or would it be an expensive ride? Could I hold on over the bumpy roads? Would I have trouble with the tight turns? Would I crash? Etc. Etc. Etc.

Let’s remember that last year during my two triathlons as a newbie, I did all of the passing on the bike (and almost all of it during the run, too). I wasn’t expecting that this year, since I was starting among faster people, and there were fewer people starting ahead of me. I’m sure I would pass people, and I’m sure others would return the favor.

Turns out, I’m fast on a bike. And the roads were very well controlled. There was very little traffic, and I was able to ride where I wanted on the road. I spent 85-90% of the ride in aero, worked hard, and only got passed by a half-dozen people, including one woman from BU with longer hair than anyone I’d ever seen on a bike and two of my Landry’s teammates. (That reminds me: must get a Landry’s tri-top so that I can represent . . . unless/until TT1 wants me to wear their colors.) I caught one of the Landry guys when an ambulance was attending to him along the side of the road near a rather rough patch of road. Poor guy.

All things considered, I did very well over the whole course. Small, wiry guys like me do well on hills, and I’m getting better at riding this little bike over open ground. (Almost 5 mph better.) I like passing people.

Finally, the run. I was feeling good today, but I was trying to be smart. I’ve had some IT band pain recently—which I’m watching closely—and over the last few days my right arch started getting cranky, too. Stretching, ice, the foam-roller on my hip and thigh, and self-massage for my foot should (hopefully) do the trick. I’m happy that this coming week is an easy one in my training plan.

So I decided to run hard but hold back a little, try to hold a good pace throughout the whole run, and not feel (too) bad about being passed. It was what it was, which was consistent but just okay . . . the only part of the event (including transitions) that was slower than last year, actually. Strangely, I’m okay with this. I had enough at the end for a nice finishing sprint.

My diabetes strategy most certainly did not work out well. Not well at all. In fact, I’m mystified by how bad it was. Diabetes is what it is, but I was hoping for something better.

In a perfect world, I would eat some breakfast before leaving the house, take some insulin for it, adjust my insulin before the start, and then take nutrition during the event (almost) like I didn’t have diabetes. Unfortunately, I don’t know how much insulin to take before a triathlon—because Insulin + water = scary—so I don’t really eat much, except a Greek yoghurt right beforehand. I don’t even usually need to eat before I swim at 5:45 in the morning, but when starting at 9:15, it seems completely different. It was also different than my normal multi-hour rides and long runs.

Perhaps it was the adrenaline from the anticipation of the event. Perhaps there’s something going on with my basal rate. Perhaps it was just sun spots. Who knows? What I do know is that I need to make it better. And I will.

At any rate, I had to take about a half-unit of insulin before the swim, and I didn’t come down much when I was in the water. Or during the ride. Or the run. Fortunately, I didn’t have much of that high BG pain in my legs that I sometimes get, but I could tell that I was high throughout the run. Next time will be better, I hope.

So, all things considered, it was a major confidence booster with some great experiences and a few obvious things to improve. Onward!

Oh, and Lisa took a bunch of amazing pictures.

I was dangling my legs in the shallow end while adjusting the goggle’s straps when Pat asked if I was ready for Sunday. “Absolutely!” I replied, just before she took off for her mile swim. A few minutes of warm-up (and a couple of goggle adjustments) later, I settled in for an easy 1500 yards. Meanwhile the place started to fill up. Over the last few weeks, all those effing triathletes have come back to the pool. :^)

New Pink Suit Lady was swimming next to me and Livestrong next to her and then Sporty Bikini Girl and Sporty Bikini Girl’s Friend. At the far end was Green Suit Lady, except that she wasn’t wearing green. (Just as Pink Suit Lady doesn’t wear pink anymore.) On my other side were Pat, Super-fast Chick, Some Dude, and the regular trio of Old Ladies. Eventually a younger guy, FNG, showed up; FNG kinda drives me nuts, since he basically hangs out on one wall or the other most of the time, except when he’s swimming straight into me. Oh well, c’est la vie de piscine.

(I really wish I knew my swim-mates’ names so that I wouldn’t have to talk about them based on what they’re wearing, but it’s hard to talk to people when we’re all underwater. And my few attempts at introducing myself when people join my lane or when we’re both resting in the shallow end between sets haven’t really gone anywhere. “Hi, I’m Jeff.” “Hi.” Okay then. But this is to be expected from people New Englanders at 5:45 AM.)

When I got back to my car I saw this note on my windshield:

Aww. That Pat is really nice.

And then, since I accidentally pulled out my infusion set around 1000 yards of my swim, I changed my insulin in the car at 6:45 before driving to work.

That “Fish Oil” bottle is my portable sharps container. Also, it’s probably good that I don’t drink coffee, because then I wouldn’t have any place for all my Diabetes Trash™.

The few people that I’ve talked about it one-on-one have all said that it will likely be useful to someone out there, so I’ve decided to go ahead and write it. Besides, May is Mental Health Month, and reducing the stigma of mental health issues by bringing this kind of thing to light is what the month is all about.

Enough stalling. On with the dispatch!

When I graduated from high school, I weighed 135 lbs (61 kg). Since I’m 5’11″ (180 cm) tall, that put my BMI at the extremely low end of normal and healthy. I was always thin when I was growing up—some used to say “skinny,” which I always hated hearing because there was usually judgment involved when it was said. I was, to quote Lisa’s matter-of-fact assessment, a “stick boy,” but to me that seemed normal. The way I looked at 18 was how I’d always known myself. Being thin and athletic was part of my concept of who I was.

Why did I weigh so little? Simply put, I didn’t eat very much. I just wasn’t that interested in food. Don’t get me wrong, I ate three good meals a day, and throughout my whole life I’ve enjoyed good food and indulged—yes, even overindulged—when it was plentiful. For the most part, though, it wasn’t. I don’t want to make it sound like I was starved, because I wasn’t. I ate at mealtimes; I ate what was available, which was pretty healthy; I didn’t ever feel overly full; I rarely got a lot of satisfaction from eating; and I didn’t mind being a little hungry.

When I got some freedom in high school, I kept eating the way I always had. Eating healthy was a choice, and (perhaps) I put more pressure on myself than was necessary to eat well for several reasons. (1) I had good eating habits and enjoyed some of the healthier foods, although (even then) eating veggies wasn’t a routine choice. (2) People in my family tend to get larger as they get older, and I didn’t want that to happen to me. In our defense, my grandmother’s desserts are delicious and plentiful! (3) As an athlete, I knew food is fuel. Even at that age I understood that the better the food, the better my running performance was. (4) It was America in the late 80s and early 90s. Even though obesity wasn’t an American epidemic yet, the media was starting to get saturated with stories about “good foods” and “bad foods.” I seemed to take those stories with more gravitas and certainty than they likely deserved.

I thought I was normal. I still do think my teenage self was alright, if atypical. I certainly never thought I had an eating disorder. There might have been clues that I thought about food the wrong way, but I didn’t see them as such. After a cross-country race I was cooling down with a friend who we all thought had an eating disorder. When I declined a hunk of French bread from her loaf, she said, “If I have to eat, you have to eat, too.” Then there was the time in my first year of college when the resident assistant on my floor tried to give me a flier for an eating disorder support group. And when we were newly married and going on road trips, Lisa would from time to time remind me that normal people eat lunch even when it’s inconvenient. I was able to shrug off the first event—my teammate was being friendly, and I certainly wanted her to eat—and Lisa and I were doing the normal thing of figuring out a shared schedule. But the support group suggestion upset me quite a bit. How much I ate was no one’s business but my own, I thought, and I certainly didn’t see myself as having a problem.

Was I calorie deficient? No. Did I have an eating disorder? It’s difficult to say looking back after all these years, but I’m inclined to say “no.” I certainly had several of the elements of disordered thinking about food and body image that are typical in anorexia and orthorexia, but I never actually avoided eating when I was hungry. Eating disorders are serious medical conditions, and I don’t feel any need to include myself in that group lightly. Plus, I was always considered very healthy; no doctor that I can remember ever suggested I was underweight or malnourished. Nevertheless, it’s a fine line and I was close to it. (Looking back, I’d say “uncomfortably close.”)

What I do know, after more than 20 years of being thin and then gaining and losing weight a couple of times, is that at 37 I have body image issues which occasionally lead to anxiety and unhappiness.

In a nutshell: I simply cannot see myself objectively.

I know that when most of us look at ourselves in the mirror, we see things that we like and don’t like, and those things usually look worse to us than they do to other people who also get to see them. That’s normal human behavior. I suspect even Clive Owen looks at himself in the mirror and occasionally sighs in frustration.

What I’m talking about is not really knowing whether I’m the right size and not knowing if the things I don’t like about myself are actually problems or just a symptom of my messed up body image. My mind’s concept of myself is still the person who weighed 135 lbs, had bony arms, and a very outie belly button.

As a triathlete who trains all the time and weighs between 145-150 pounds—depending on the season or phase of the moon, it seems—I’m able to convince myself that what I see isn’t actually the way things are, but it’s all based on faith and logic and not on what I think I see. This I can manage pretty well. “That Buddha belly there,” I think to myself, “isn’t really there. And besides you need it for your infusion sets and CGM sensors. So don’t get any ideas.” And, “That kind of jowly area you have there . . . it isn’t really there either. Really. Really. I know. Trust me. Really.”

What I still have a hard time dealing with are the comments from other people that I’m too thin.

I feel like I’m in a very good place with both my weight and my feelings on food. (Although sometimes I think diabetes would be easier if I didn’t have to eat, that’s completely beside the point and only ever happens when I really, really want to eat but am battling long periods of high blood glucose.) I like to eat. I look forward to eating—and cooking, too! I eat meals of all sizes. I snack. I eat so-called junk food along with my healthy lunch from home. I adore ice cream. Food and I are tight, and my weight stays where it is only because I workout.

But when other people suggest that I’m working out too much or have lost too much weight—even though I haven’t lost any in almost 18 months—my mental equilibrium gets thrown off. I know that I should take it as the joke or sarcastic compliment that it almost certainly was. But not knowing what I really look like and having been defensive in the past, these things leave me worried that maybe people are trying to tell me something that I really should be able to see for myself— just like my RA suggested almost 20 years ago. There’s a fine line for me between shrugging off these comments while being happy with who I have become and accepting that I really just don’t know whether there’s a kernel of truth in them.

I don’t really know how to end this post except to say that it’s not as bad as it might sound from the last few paragraphs. I think about food all the time because I have diabetes, and I think about how I look most mornings after taking a shower and whenever I change my diabetes paraphernalia, but I don’t feel dragged down by food or my body image very often. Mostly I just want anyone reading this to know that (a) if you’ve felt the same way, you’re not alone, (b) body image problems and eating disorders can happen to men, (c) sometimes people are trying to help you the best way they know how and sometimes there just wise-cracking, and (d) it’s okay to like yourself no matter how you think you look. Well, that’s probably enough rambling for now.

p.s. — Yes, this post was scary to write, but it was scarier to publish it.

p.p.s. — If you feel like leaving a comment—which I encourage—please be open-minded and courteous.