Lisa and I went to a wedding in New York’s Hudson River Valley over the weekend. On Saturday before the wedding, Lisa, a college friend, her boyfriend, and I went to Dia:Beacon, the contemporary art museum.
In lieu of printed tickets, we got clip-on metal thingies that you’ll often see at museums. But where should I put mine? It wouldn’t stay on my shirt collar or jacket. Ah, I know:
On the one hand . . .
“I’m tired.”
“It’s going to be cold.”
“I want to be more awake for tonight’s lecture than I was last week at the MFA.”
“I don’t think my legs have a six-mile tempo run in them this morning.”
“I wonder if I’m getting a shin splint.”
“It’s going to be dark and I don’t have any light-colored, cool-weather apparel.”
On the other hand . . .
“Do I really want to end a 30-day training streak?”
“There are only 17 more days until the triathlon, and I could use the training.”
“I set a temporary basal hours ago to have good BGs when running.”
“If I don’t exercise, my BGs will be wonky all day.”
“I plan on eating a big-ass burrito tonight, so I need the exercise for that.”
“Because of all this debate, I’m not actually sleeping.”
“Since I had Lisa set the alarm for 5:00 and since I woke her up, I should make it worthwhile.”
The “ayes” have it. The motion is carried. I took a short, brisk run. And I’m very glad that I did. Mostly.
It was a long winter with more snow than I can ever remember. We had snow on the ground continuously from the day after Christmas through mid-March with an extra four or five inches on April Fools’ Day. Despite the weather, we did a lot . . .
Here are photographs from our five-month winter adventure.
Yesterday was Patriots Day, my favorite holiday and the best day of the year. As usual, I walked down to Natick Center with a coworker to watch the running of the Boston Marathon. I’ve always loved the event, and I think I appreciate it a little more this year than in the past.
Here are — also as usual — a selection of photographs from yesterday. Click any image for a larger version. Or just click on the first one and page your way through. Enjoy!
Today I ran the Clamdigger 5 Miles. I originally planned to run the BAA 5K in Boston, but I missed the registration cut-off. And then I thought I might run a 5K in Worcester, but I had a conflict — the only time I could get my hair cut before a wedding next weekend — so I went online to find an event. The closest “good” one I could find was way down in Southern Rhode Island. (It’s a small state, unless you have to clean it.) Not my finest effort at planning ahead.
Now I like running — that’s probably not a surprise — but I was really looking forward to a shorter race after the half-marathon last month. I was a whole lot less nervous than before New Bedford; mostly I was anxious to see how fast I could run. I was hoping for something between 37 and 40 minutes. And I was also hoping to see how well my diabetes skills were holding up.
(I’m not going to say much about diabetes, except that it cooperated nicely enough. I mean, it didn’t cooperate really well — my CGM woke me up every two hours during the night, because I just could not bring my blood sugar down below 200. In fact, when the CGM high alarm went off in the first mile I almost kicked my pump after it slipped out of my hand as I was turning off the alarm. But my blood glucose didn’t move around too much during the race and was sufficiently low that it didn’t make running difficult.)
A word about the course in Westerly. It is very flat; it’s right along the coast; and it’s an out-and-back. Oh, and the wind was blowing like crazy. It would be at our back on the way out and in our faces on the return. Because it had rained overnight and the tides were high and wind-driven, there was a bit seawater on the road.
I had a strategy: Run really fast on the way out, being near the front so that I wouldn’t need to share the sidewalk skirting the big water puddle and letting the wind push me down the road, and then try to keep running fast once we turned into the wind. I had done a tempo run a couple weeks ago with four miles at 7:30/mile, and I hoped to go a bit faster than that. Run fast. Some strategy, huh?
But that seemed to work pretty well. I was near the front at the start. While I didn’t go crazy to stay with the guys who went out at 5-minute-something pace, there weren’t that many people in front of me. I missed the first hand-painted mile marker sign, but I couldn’t really believe the 13:40 I saw on my watch at mile #2. (Did I mention the wind was quite strong?) The third mile was mostly sheltered from the wind and I still felt pretty strong. I’d been passed by a half-dozen or so people, but I was starting to make up some distance after we turned into the wind. With one mile left, I was excited by what I saw on my watch. That final mile hurt, but I ran it as fast as I could.
36:26. I beat the low end of my time range and finished 21st out of 137. Yay!
I kinda wish the tri were over . . . so that I would know how it went and whether I enjoyed it . . . so that I might be able to figure out what I want to do next, training-wise.
I need goals.
I was trying hard to figure out what was going wrong with my appointment at Joslin. I went through a minor saga to get approved to visit an exercise physiologist, and I had arrived with a bunch of thoughts and questions about how to get the most out of my training within the constraints of diabetes. But it wasn’t going the way that I had hoped.
Specifically, I wanted to share some of my recent BG readings during exercise and to get answers to these questions:
I did get a couple of concrete tips and the promise of some e-mailed reading material, but mostly I heard a lot of “Yeah, that’s tough” and “uh huh.” The appointment wasn’t really going anywhere for me; I know that everybody’s diabetes is different, but I also know that people can do what I’m hoping to do.*
Then — almost at the very end of the appointment as the exercise physiologist was going back and forth to the printer to get me some materials — he handed me a copy of the DESA Challenge newsletter with Ginger Vieira on the cover.
“Hey, I know that person. Well, virtually know her. She’s great!”
“Really? So you probably know all this stuff already.”
“Kinda. I’m here to find out how to get the most out of my limited training budget, so that each of my workouts are as productive (diabetes-wise) as they can be.” I was sure I said something like that at the very beginning of the appointment.
“Oh, you need a coach.” I did my very best to keep from growling. (People who know me know the growl I’m talking about.) That kind of expert coaching advice was why I was there.
That’s when I realized that we had a mismatch in experience and expectations. I don’t think he knew how much I already knew about exercising with diabetes and that I was there mostly for fine-tuning. And I didn’t know until I got there that they weren’t really oriented toward supporting athletes with diabetes.
Now, I did get some useful advice, but I had to push back on a few things, sharing my concerns that if I ate more and took more insulin beforehand to cover it, I would see even larger drops in my blood glucose. I seem to be very sensitive to insulin when I’m active at all. I also said I wasn’t satisfied with the 70-100 mg/dL downward changes during exercise after he said that my exercise results sounded “great.”
So I’m frustrated. I like a lot about where I am with exercise . . . especially in the mornings, but I’m having difficulty tackling that last 20% of the athletic experience. I just wish I had correct expectations up-front so that I wouldn’t have had to take off work and travel into the Fenway area on the day of the Red Sox home opener only to have a less than excellent experience.
Ironically, the most concrete, actionable piece of advice I got was to connect with specific athletes with diabetes online, including a couple that I’ve already talked to. We don’t have medical degrees, the same knowledge about what’s in the research literature, or anywhere near all of the answers about why things work the way they do, but we seem to have a ton of insight into what might work and what certainly hasn’t worked for us.
Nevertheless, I’m also going to send in some of my exercise data, as requested — I actually brought in descriptions of four recent workouts, although we didn’t go over them — and see what happens. Nothing ventured, nothing gained and all that.
After getting home this afternoon, I took a much needed run to unwind (and because my training plan said to). As if to underscore the reason why I sought out extra help, my BG dropped 130 mg/dL on a rather short, relaxed 3-miler. Next time will be better.
* — I was super unhappy (and it probably showed) when he suggested that the Team Type 1 rider who told me this was certainly doable — since it was possible for him — might not be telling the truth. You don’t badmouth my role models without proof.
Just a quick post this evening, but I saw something at the Joslin Diabetes Clinic this afternoon that just broke my heart: In the men’s restroom someone had etched “Bad” into the top of the mirror.
You are not bad. Diabetes is hard — and we don’t always get it right — but it is not your fault. You didn’t ask for diabetes; you don’t deserve to have it. We have so many decisions to make, some of which can cause us to feel like we have to choose whether we’re going to live our lives now the way we want to or not. That’s a tough, inhuman kind of choice to make.
You are not bad . . . and it gets better. Hang in there.
Dear readers, what would you say to the young man (I presume) who wrote this? If you were a child with diabetes, what would you say to your younger self?
Image credit: Michael D. Dunn on Flickr
The “test strip rebellion” is a grass-roots movement to access our health data from our diabetes self-management devices: meters, pumps, CGMS, online apps, etc. It’s our data, and we’re going to take it back . . . one way or another.
Stay tuned.
I have previously mentioned that I wing it . . . a lot. My endo and I have devised carb:insulin bolus ratios based on some prior experiences, and I settled on my basal rates by testing — days and days and even a night or two of hungry, grumpy testing. And having done all this work, what do I do? I ignore it. Still.
Months after saying I wasn’t going to be so scurred of dosing the appropriate amount of insulin, I still don’t always feel confident giving all of the insulin that my pump’s bolus wizard suggests. And I also see lots of times where I set a temporary basal or treat incorrect basal rates with extra food.
It occurred to me this afternoon that I can use my pump’s data (via CareLink) to find my effective carb:insulin ratios and probably my insulin sensitivity for corrections, too. I saw when I was parsing the CSV file I downloaded from CareLink that it contains the full bolus wizard info, including estimated carbs, suggested bolus amount, and actual insulin delivered. Now that I can parse the file, I can get those values, compute the carb:insulin ratio for each bolus, and see whether my BG values behaved as I would have liked. Given enough data, I hope to see what ratios work the best. And then, of course, program those into my pump settings and (hopefully) use them with more confidence. Less winging it.
I like having a mini-project to help keep larger projects moving forward.
With apologies . . .
Blindly I see you two lanes over
Through the haze of my goggles
I can only make out red and black,
The shimmering glow of coals
In a furnace propelling you effortlessly
While I flail and breathe water.
You are long and lithe and all leg
So fast as to be all but invisible.
I am all but blind in the pool,
But I see a flash of pale
And I know.
Last Thursday, I saw my endocrinologist. We all agreed that my 7.8% A1c should be lower. Not in the sense of “Hey, you know you should lower your A1c,” rather “Your BG readings and CGM data look great; I don’t know why your A1c isn’t lower . . . yet.” There was general agreement that if I keep going the way that I have been for the last couple months, my A1c should show actual improvement the next time we meet in late July. I want to be optimistic, but it’s been so long since I’ve seen the low 7s or — g-d help me if I dare to dream — the 6s, that I think I’ll just keep my feelings low-key. After all, my heart got a little broken last week, when I saw a more-or-less unchanged A1c result in my labs.
They — my endo and her newish physician’s assistant — thought it was great that I ran a half-marathon and that I’m doing a triathlon in five weeks. And they thought my lipid profile was probably as good as it could possibly get. (My HDL and LDL were almost identical at 66 and 67.) They also made sure that my education order form got sent to Joslin so that I could see an exercise physiologist there this coming Friday.
I’ve been trying to see an exercise physiologist at Joslin for a while, because I need a little help. As I told my endo and PA, “I love all of the exercise and training for events, but I feel like I’m winging it on the insulin and nutrition front.” Where I am now has come mostly through trial and error. Sometimes, like during the half marathon it isn’t quite right, and other days (like today) everything works out really well.*
I don’t like winging it. I don’t expect rainbows and unicorns every time, but it would be nice to understand a little bit more of what’s going on and what I can do to maximize my chances of success, how I can make sure most of workouts are quality ones, and what post-exercise things I might do to prevent lows.
That’s why I want to get some professional help. So far, I’ve mostly been trying to repeat what works — and fortunately most of what I’m doing these days seems to work, even if it feels sketchy — and to learn as much as I can from the days that don’t go quite right.
Last Friday, the day after my endo appointment, is a good example. On Wednesdays and Fridays, I wake up at 5:00 to go to my local high school pool and swim laps. It’s early, and I usually feel tired, but I know that it’s what I’ve got to do, so I go. This particular Friday, though, I didn’t get the chance to swim the laps because I had hypoglycemia before I started. Since I had eaten like I normally do before going swimming, I decided to see what happens has to my blood sugar from the food when I don’t actually swim. How long does it really take those carbs to hit my bloodstream? When should I eat them so that they actually help me when I’m working out?
Here’s the data:
2:01 - 83 mg/dL - Uh oh, better eat a tiny bit 5:03 - 88 5:15 - Energy gel (22g) and 2 glucose tablets (8g) 5:30 - Shovel snow for 10 minutes (grr . . .winter in April) 5:50 - 59 - Treat with 3 glucose tables (12g) No swimming :'^( 6:22 - 157 - Going up! Better correct w/ 0.5u 7:27 - 302 - Oy! Better correct some more, plus I'm hungry. 1.9u (correction) + 6.6u (for the food) 7:51 - 289 - Well, a man's gotta eat despite the BGs, so I did. 10:15 -143
What do I take away from this? Not sure exactly, but here are some thoughts.
We’ll see what happens when I go swimming tomorrow morning to make up for last Friday.
* — I had never thought I would ever say, “I just did an easy 11 mile run,” but that’s what happened today. Yeah!
** — I haven’t run 800m repeats since high school; I don’t think I’ve run a timed half-mile since there either. But running them was on my training plan, so I did four sets, and I was pleased to see the results: 3:13, 3:15, 3:15, 3:25. Boo-yah!
Today a bunch of my online peeps were in California visiting Medtronic. I wish I’d been invited to go to, but that was not the case. Had I been there, I would have squealed like a little schoolgirl at the pre-announcement that they’re rolling out support for uploading and using CareLink on a Mac next week.
Not only is that great for me when working with my own data, it will make developing my app easier. People may still need to take the extra step of downloading a CSV file containing their data, but at least they’ll be able to do it on their platform. Not perfect, but better.
In an ideal world — the one that I would have advocated for at pump/CGM HQ — third-party app developers (like me) would be able to ask the online CareLink database for a person’s diabetes data via an application programming interface (API). Mobile app developers could then hold on to that data for offline or mobile use without ever needing to talk directly to the medical devices themselves. Frankly, writing code to connect directly to a life-preserving medical device is quite risky and something I would like to avoid; it’s also the kind of thing that requires rigorous, time-consuming, expensive FDA approval. Not very appealing when all I want to be is a data consumer.
I’m hoping that Medtronic provides a mechanism to open up this data soon, because I’m getting close to being able to benefit from it. And when I say “this data,” I mean “our data” because it really is ours. We’re the ones who generated the data through our self-managment decisions, and we’re the ones who will benefit the most from using that data to make decisions. All I’m really asking for is a way to log in to CareLink without using a web browser and to retrieve data securely.
I’ve been working on my pump+CGM data visualizer a lot recently — most evenings in fact. On my Mac, I can extract events from a comma-separated value (CSV) file generated on the CareLink website, and I can pick out “interesting” events that are relevant for self-management. Now I’m working on being able to store those interesting events in a form that I can send to my iPod. (Then there are the tasks related to visualizing the data, but I’m starting small.)
It’s taking me longer than I expected to build this application. Objective-C isn’t hard, but learning the ins and outs of any new framework library is always a bit involved. (Turns out I’ve been using a lot more C++ than I had expected . . . not that there’s anything wrong with that.) And I realized that I actually need to build two applications: one part that sits on a “traditional computer” that can talk to CareLink and the other that visualizes the data on an iPhone, iPod, iPad.
Here’s a little example of the raw data that I will eventually use to generate graphs and an annotatable logbook:
3/30/11|16:20:00|GlucoseSensorData|AMOUNT=106, ISIG=10.2 3/30/11|16:25:00|GlucoseSensorData|AMOUNT=98, ISIG=9.71 3/30/11|16:30:00|GlucoseSensorData|AMOUNT=98, ISIG=10.59 3/30/11|16:35:00|GlucoseSensorData|AMOUNT=100, ISIG=10.66 3/30/11|16:40:00|GlucoseSensorData|AMOUNT=102, ISIG=10.94 3/30/11|16:45:00|GlucoseSensorData|AMOUNT=102, ISIG=10.6 3/30/11|16:50:00|GlucoseSensorData|AMOUNT=102, ISIG=10.56 . . . 3/30/11|18:14:01|BolusWizardBolusEstimate|BG_INPUT=195, BG_UNITS=mg dl, CARB_INPUT=0, CARB_UNITS=grams, CARB_RATIO=8, INSULIN_SENSITIVITY=50, BG_TARGET_LOW=110, BG_TARGET_HIGH=110, BOLUS_ESTIMATE=1.7, CORRECTION_ESTIMATE=1.7, FOOD_ESTIMATE=0, UNABSORBED_INSULIN_TOTAL=0, UNABSORBED_INSULIN_COUNT=2, ACTION_REQUESTOR=pump 3/30/11|18:14:01|BolusNormal|AMOUNT=1.7, CONCENTRATION=null, PROGRAMMED_AMOUNT=1.7
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