Category Archives: Diabetes

To Paula Deen

Posted on January 18, 2012 by Jeff Mather

Hey Paula!

It’s true I’ve never watched any of your shows or tried any of your recipes, but I saw your picture on a magazine cover or two at the supermarket. Now that you’ve announced that you have type-2 diabetes, I feel like we’re definitely on a first-name basis.

Type-1, type-2, LADA, gestational—no matter the kind, diabetes sucks. I’m sad to hear that you joined our club. It’s a bummer, but there’s a really big supportive group of people online and in real life who are here for you.

I know there’s a brouhaha brewing about the how/why/when of your announcement, but I frankly don’t care. . . .

Except I will say this: You owe us.

You have a high profile because of your pre-diabetes life. And you have partnered with Novo Nordisk to promote pharmaceuticals, putting you squarely in the diabetes community. You best be using your influence to help people with diabetes. Here are some ways:

  • Promote understanding of the differences between type-2 (which you have) and type-1 (which I have), since so many people in the US think there’s just one kind.
  • Encourage healthy lifestyle choices for everyone, whether touched by diabetes or not. T-2 is more than diet and exercise, but we have to be honest about their role. There’s no guarantee one way or the other, but every little thing we do (within reason) makes a difference.
  • Help people with diabetes in your audience understand that they are more than their disease, that there will be better days and worse days, and that they can do this.
  • Work with CDEs (at Novo and elsewhere) to develop a message of empowerment that people with diabetes can use to improve their own self-management as they make choices and work with their family and healthcare providers.
  • Stress that there’s more to diabetes than Novo’s drug-of-the-day. Be holistic.

Remember that a bunch of people are watching you. The diabetes online community is watching, too. We’re nice people, but we look out for our own. Based on what I’ve seen in the past, we will cut you like a piece of pecan pie if we think you’re using diabetes for your own benefit and aren’t giving back.

Diabetically yours!

Posted in Diabetes | 3 Comments

What (Kinda) Works Now

Posted on December 5, 2011 by Jeff Mather

Chris sent me a message saying that someone might ask me about running with type-1 diabetes. I haven’t yet heard from him/her, but it got me thinking about what I’m doing now and how it’s going. It’s not perfect, of course, but I’m actually in a pretty good place.

Let’s start with the big disclaimers. First, this is what (kinda) works for me. Your diabetes may vary; it likely will. Second, this has only recently started working for me; it could all change tomorrow. Third, it assumes that you use an insulin pump and that your basal and bolus rates are correct-ish; mine are getting there. Finally, I can’t consistently reproduce what I do in training when I’m racing; something always seems to happen.

Remember, three big things impact BGs during exercise: insulin, food, and intensity. (There are other things, but these are the big ones that you can control.)

Active Insulin: I tend to workout when I have no (or, at least, minimal) insulin on board. For example, I swim and do my long running/cycling first thing in the morning before any boluses. And when I workout in the afternoon, it’s been 4-5 hours since my lunch bolus. This means that there’s very little extra insulin to bring down my blood sugar. When I do have rather high BGs (but no ketones) because I misjudged a meal, for example, I will sometimes give myself a little insulin. I’m really conservative doing this, though, since it usually brings me down more than I think it will.

Basal Insulin: I am starting to think that changing my basal insulin has less of an effect (for me) than I had originally suspected. This might be because my basal rates are fairly low now, or it could be that my body is better at using fat and carbs together than it was in the past. Who knows? Anyway, when I run or ride my bike, I set a 30% reduction 1-2 hours before I start. Usually longer in the afternoon and shorter in the morning, since I like sleeping. When I swim, I set a 0% basal rate (i.e., no insulin) starting 45-or-so minutes before I hop in the water. There are three reasons: (1) I’m skittish when it comes to insulin and water, (2) it’s similar to what happens during triathlons, where I need to detach from my pump to leave it in transition before hopping in the water, and (3) it seems to work.

Food Before: Food is not the best part of the three for me. I want to eat more before I train, because food is fuel, and I hate running out of steam. (We’re remarkably like people without diabetes in this respect.) Food normally means insulin, which violates that whole “minimal insulin on board” thing. But I’m working on getting myself in a mindset where I can experiment with small amounts of insulin to cover pre-athletic carbs. High glycemic foods still spike my BGs when I’m working out, often more than I would like. Lower glycemic things do better, but quantity counts; 20g of carbs from Greek yoghurt about 10 minutes before I did a two-hour run worked well yesterday, the first time I tried it. Be careful here.

Food During: I tend to eat like I don’t have diabetes when I bike or run. It’s just how it works for me. I eat an energy gel every 45 minutes to keep up my energy. I also carry a full tube of glucose tablets with me, just in case. And I drink water. Water is important.

Food and Insulin After: I find that I always need to give myself insulin after I’m done exercising. I haven’t yet figured out how much to give, but I usually bolus the full amount of any correction I would need (or enough to bring me down 25 mg/dL [1.5 mmol] if my BGs are in range). After really hard workouts, I like a protein-rich snack with carbs. (Odwalla’s Chocolate Protein Monster is my favorite.) These carbs and protein are important for recovery, and I find it necessary to bolus the full amount for this snack, even though I will eventually be more insulin sensitive for the next 24 hours after big workouts.

Frequency: It helps to have a regular frequency, usually three or four times per week (or more). If I workout at least this often—although I can’t remember the last time I did less—my insulin sensitivity stays much more “normal” than if I don’t. Consistency is key.

Supplies: I bring these things with me on my workouts.

  • A full tube of glucose tablets
  • My pump (enclosed in a Zip-Lock bag to keep perspiration from killing it)
  • My BG meter when I go on longer runs or when I’m curious about what’s happening on shorter outings. I use the OneTouch Ultra Mini just for exercise.
  • Energy gels. I’m not very brand-loyal; I like vanilla and chocolate Gu and Clif Shots and just about any Hammer Gel flavor.
  • Water (in a FuelBelt Sprint Palm Holder)
  • I also carry about $10-15 with me in case I need to buy some extra food.

There are some other things I like, but they don’t have anything to do with diabetes preparedness. I have a Petzl Tikka headlamp, which is great for running on these dark afternoon; I’ve never had a jacket as nice as my Asics one; and I need shorts and pants with pockets . . . and a drawstring. (Without the drawstring, all of the extra stuff in my pockets makes ‘em fall right off.)

Good luck! And just remember, do whatever works; there’s no single right way.

Posted in Cycling, Diabetes, General, Life Lessons, Reluctant Triathlete, Running, Swimming | 7 Comments

Closing the Books on November

Posted on November 30, 2011 by Jeff Mather

Here we are: November 30th. The last day of November. The last day of post-something-everyday month. I feel this year’s NaBloPoMo has gone better than last year’s, and I’m thinking about some possible tweaks for next year. Maybe I will take a little hiatus starting tomorrow, using the time to read books on my reading list and further purge the office of mental baggage. We’ll see when I’m moved to post write something new next.

One thing I had hoped to do a month ago was to clear out a bunch of the things I had in mind to post. I posted roughly half of them. Yay! This dispatch aims to tidy up some loose ends. It will probably be long, and it might be rambling. Beware! If anything turns out to be just a bit too long or important, I’ll break it out into its own post.

It’s a good time to clear the decks. Lisa is out for the evening, I’m streaming a concert by Cœur de Pirate (mp3), and I’m in the mood to write. In fact, I’m in the mood to do just about anything to take my mind off the fact that I’m basal testing and have to skip dinner. Fortunately, at lunch I had some of the very delicious Comté cheese that we bought in Montréal last weekend; I hope that it will fortify me for another four-or-so hours when I can eat a very late (10PM) dinner.

Oh, one more thing before I get going with the things I had intended to write about. I’ve been listening to (and loving) the new album by Caracol. Unfortunately, it isn’t available in the US yet. (Next year, she hopes.) But you can stream the tracks from the web site. It’s so good! In my book, it’s one of my Top 5 for 2011. Go check it out and tell me what you think and what albums/CDs/whatever you really liked this year.

On with the show.


Basal Testing: I hate basal testing. I don’t think anybody who uses an insulin pump likes to do it. Why would we? It involves eating a normal meal, waiting at least three hours since the last insulin bolus, skipping the next meal, waiting 4-6 hours after the normal meal time to eat again, and recording blood glucose every two hours (or so). And that’s just during the daytime. At night, the requirement is to go to bed without a snack and then wake up at 1:00 and 4:00 (for example) to test.

Ideally, you see an awesome, tight range of numbers that make you feel confident that your basal (background) insulin rates are correct. But if there’s too much movement one way or another, you have to stop. This means you get to eat early, but it also means that you have to make an adjustment in the pattern and then run the test again on another day. Plus, who actually does a basal test when everything is going right? No one except crazy people. No, you only do a test to figure out what is going wrong.

But in October I decided to bit the bullet and get my all my basal rates as correct as they can be. I was noticing a lot of trends in my CGM graphs and decided against just making changes willy-nilly. I still suspect that most of my problem is under-bolusing for meals, but I can never know without checking that the basals are correct first.

One big problem with basal testing is each day is a big ole cycle that leads straight into the next. Where do you start? Some people say, “Overnight. Get that right and then you can start your march through the day.” Maybe for them. My evenings are cray-cray, going high after my after-work training and then bouncing around after dinner before I give myself my final “well, I’ve messed up today pretty good” insulin and/or snack before bedtime. That makes overnight testing difficult.

For me, it’s been easiest to find a few mornings that seemed designed for testing—in-range BGs, flat/normal CGM graphs overnight—and skip breakfast. Then I tested my breakfast bolus ratio and timing. Then I skipped lunch for an afternoon basal test, followed by the lunch bolus test. And now here we are at dinnertime without dinner. Once I’m done here I can figure out a rubric for my afternoon/evening workouts and test that before taking a stab at dinner and (finally) the overnight basal.

One hard question I’ve had to answer is whether to exercise on days when I do basal testing. Since I train 5-6 days each week, I feel okay skipping one for the greater good. But then there’s the admonition that you should do what you normally do, which for me means exercise. Today I skipped a bike session in the basement, which is “okay” since I swam this morning, but it’s also torture because I really, really want to ride my new bike. Greater good.

By the way, to any CDEs, endos, etc., who might be reading this, please note: I’ve been on the pump for over ten years, and this will (hopefully) be the first time that my basal rates and bolus ratios are correct/proven. If you’re going to put someone on the pump, you need to (a) make sure y’all work together to get the settings locked down from the start, and (b) work on all of the behavioral issues that come along with multiple daily injection (MDI) therapy. Just saying.

I just hope that when I get through with this process, I’ll be able to translate all of this hunger into a baseline for making amazing observations about exercise+insulin+food.


Three hours to go.


Organized Bike Touring: I was asked several times right after my trip (photos) whether I would do another organized bicycle trip. Most of the people on the tour had done several already and were talking about which one they would do next. I always played coy. “Maybe.”

I enjoyed myself quite a lot. The scenery was great. I really enjoyed spending time with Mom in France. My fellow travelers were wonderful. The tour leaders were fantastic people. It was terrific having so many details taken care of; all I had to do was get on my bike and ride. And there was plenty of time to do things other than cycling.

But two things brought me down. (1) I wish there had been more actual riding. I could easily have gone an extra 20-30 miles most days, and I wouldn’t have minded a slightly faster pace. I certainly wasn’t expecting a race or even a hard ride each day, but I think the tour company we used was aiming at a more casual riding experience . . . which is totally cool, if that’s what you’re after. No judgement from me. Honest. And (2) Lisa wasn’t with me. I was having a great time doing and seeing interesting things, eating delicious food, and going to beautiful places that she would have also loved . . . just without the bike.

If only there were a way to bring Lisa, a noncyclist, along on a trip that involves some (longer distance or more intense) bicycling. Oh wait, maybe there is! Clearly it involves bringing a larger group of friends to France, some of whom ride and some who don’t. We’ll see what happens in a couple years. :^)


Two and a half hours . . .


Occupy This! will be posted tomorrow.


Two hours to go.


iOS v. Android: I have an iPod Touch. It’s great. I have all sorts of useful apps, and I use it all the time. It syncs with my Mac apps, including iTunes. It doesn’t make phone calls.

I have a Google Nexus One phone. It has a nicer-than-the-iPod’s input editor coupled with its not-quite-as-nice touchscreen keyboard. It has a couple of apps that I used when I was in France, only one of which was not already on my iPod. It kind of plays music. It shares data with “useful” Google apps on the web. It makes phone calls, is unlocked, and accepts normal SIM cards like the one I bought in France that let me call home at 4¢/min. (No shit! 15€ gave Mom and me so much talk time over two weeks that we had a bunch left over when we returned home.)

I wish I had a mythical, nonexistent, unlocked iPhone that supports pay-as-you-go and takes regular SIM cards. That would be perfect.


Are we there yet?


Before There Was Facebook: A Short, Subjective, Incomplete Insider’s History of PlanetAll will be posted Friday.


Almost there! By the time I write one more and then proofread, it should be “dinner time.”


Cyclocross: Early in the month I had thought about writing about how I was considering cyclocross as an off-season pursuit. But then I saw one and decided that it looked painful (and not in a fun kind of way). Although this did make me laugh.


Yay! I made it! I did my proofreading, took one more BG test, and had dinner while chatting with Lisa, who just arrived home. The results are mostly good news: I was incredibly stable until 9:00, at which time I started to drop slowly but steadily. That happens to be just an hour after my basal rate kicks up from 0.4 u/hr to 0.7 u/hr. That hardly seems like a coincidence.

Posted in Cycling, Data-betes, Diabetes, General, MetaBlogging, NaBloPoMo, NaBloPoMo 2011, Travel | 2 Comments

Titration

Posted on November 20, 2011 by Jeff Mather

titration: (noun) the process of gradually adjusting the dose of a medication until optimal results are reached.

I remember doing titration in high school chemistry class and not really enjoying it. You wait and wait and wait for something to happen while adding more and more and more reagent to a flask in the hopes that it will turn a pretty color. Or rather, after a game of rock-paper-scissors, your lab partner adds the reagent to the flask while you write down measurements and try to stay awake. Even though I loved learning about chemical reactions and trying to recreate some of them at home—how did I not burn the house down playing with purloined magnesium tape?—I think the titration lab was the one where I realized higher-level studies in chemistry weren’t for me.

It feels so similar now as I try to titrate the correct dosage of insulin to give when I exercise. It’s still the process of running multiple experiments involving adding a known amount of chemicals—in this case food and insulin—coupled with a lot of record-keeping. The big differences of course being that (a) I’m the flask to which the chemicals are added, (b) I have to wait a week between experiments, and (c) there are reagent strips I use with my blood glucose meter that together tell me the values and keep track of them for me. And, of course, the really big difference: If I mess up the experiment too badly I can’t just poor the contents of the flask down the lab desk’s drain.

After all this time, I still don’t really like titrating—it’s scarier to mess with insulin than it is to burn magnesium tape—but I also don’t like these other things when I’m training:

  • being hungry
  • running out of energy
  • experiencing hypoglycemia
  • having high blood glucose
  • not knowing what’s going to happen

Unfortunately, in this lab experiment, each apparatus person with diabetes is different. Otherwise I would just ask my awesome internet friends. Even I probably won’t give the same results from one week to the next. That being said, last week’s experience of going way up during the first 45 minutes of my long run and then holding steady for the next 45 minutes (eating beforehand and along the way) was the same as today’s.

Next long run (in two weeks) I’m going to add some bolus insulin and see what happens. I’m going to start minutely small and go from there. I have about sixteen weeks until Around the Bay, and I don’t feel any particular need to approach the problem via bisection. I’ll just use the normal titration method, starting small and gradually adding more until I find the “right answer. . .” or something near it.

Today’s run was actually quite good, elevated BGs notwithstanding. The weather was beautiful in the Bay State this weekend, and I got up early enough that I didn’t feel rushed to get home before we went to see the film “Martha Marcy May Marlene.” (It’s good, but bleak. Wicked bleak. “Winter’s Bone” bleak. Life lesson: stay away from John Hawkes.) I picked the 10-mile loop with three mile-or-longer hills, and I threw about fifteen minutes of tempo running into the middle of it. I figure I’ll gradually keep adding longer stretches of high intensity as I add more distance.

And Tuesday I’m going to see a guy about a bike.

Posted in Data-betes, Diabetes, NaBloPoMo, NaBloPoMo 2011, Running | 1 Comment

The CWD Info Clearinghouse

Posted on November 15, 2011 by Jeff Mather

As mentioned in my previous post, this is just a short placeholder for you to post resources for newly minted parents of children with diabetes.

I don’t really follow the CWD community . . . sorry, but I’d like to help a friend out. So leave a comment below with what you know. Please post any of the following:

  • Links to blogs of parents of children with diabetes
  • Twitter accounts of parents of CWDs
  • Websites that offer reputable information for parents
  • Really good on-ramps to the DOC for newbies
  • Anything else you think would be valuable to know
Posted in Diabetes, Hoarding, NaBloPoMo, NaBloPoMo 2011 | 9 Comments

Beating the Advocacy Drum on the Day after World Diabetes Day

Posted on November 15, 2011 by Jeff Mather

Yesterday was World Diabetes Day, the date that would be the 120th birthday of Frederick Banting, the principal investigator of the project that isolated insulin, preventing diabetes from being a death sentence for those of us who can’t make our own (T1s) or enough of it (T2s). The commemoration is spearheaded by the International Diabetes Federation, the organization with the mission “to advance diabetes care, prevention and a cure worldwide.”

We were busy with our own kind of advocacy round these parts: T-shirts. But I didn’t want to let this important day go under-recognized, so I bring you a post about advocacy in three acts. Three acts.


Act One: Low Glucose Suspend — As you might remember, last Friday I finally met Bernard Farrell after months of near misses. Bernard’s really up on diabetes technology, and we talked a little bit about the Artificial Pancreas Project, which should eventually automate big parts of the T1 diabetes experience. It’s an improvement, not a cure. It’s also years away.

We talked a bit more about the low-glucose suspend (LGS) technology that’s currently for sale in the European Union but isn’t available in the United States because the FDA is worried that it might cause hospitalization for DKA (diabetic ketoacidosis, or very high blood glucose). This misunderstanding of the differences in immediate danger between severe hypoglycemia and DKA seemed ridiculous to us, as it has to every other person with diabetes that I’ve talked to about it.

The Juvenile Diabetes Research Foundation (JDRF) dropped a bombshell a couple weeks ago in an attempt to spur the FDA toward more progressive action on LGS. In full-page ads placed in the New York Times and Washington Post, they cited research that found 1 in 20 people with type-1 diabetes dies from hypoglycemia. LGS could prevent many of those deaths, which is exactly the reason that we need it.

(Victoria Cumbow wrote an excellent article about the JDRF ad and her own experiences with severe hypoglycemia. I recommend reading it when you’re done here.)

The day after meeting Bernard, Lisa and I went to the movies and saw “J. Edgar”. [1] I was heading low before the film started, so I tested with my meter to verify, preemptively treated it, and turned off my CGM’s low alarm so that it wouldn’t start singing to the crowd during the moody period drama. (When I’m hanging out in the low-rent numbers it usually gets very insistent every 20 minutes-or-so.) Sunday morning, I did my long run for the week: 10 miles.

About 4:00AM yesterday (Monday) morning, an hour before the alarm was set to wake us to go to the pool, I awoke feeling not quite right. I tested: 70 mg/dL, which is low. During the daytime I would normally have started to feel symptoms, but at night I rarely do. As I was treating the low, I looked at my CGM, wondering why it hadn’t woken me up. It read in the neighborhood of 70, and that’s when I realized that I had forgotten to turn the low alarm back on. I didn’t hear anything because there was nothing to hear.

The worst part about this event was that the CGM graph for the previous three hours had me in the mid-40s twice for extended periods during that time. I’ve never had severe hypoglycemia (*touch wood*), but Monday night rattled me, especially given the whole 1-in-20 statistic. When I told Lisa about it today—after she mentioned Victoria’s article—she said, “If I wake up and you’re dead from hypoglycemia, I’m going to kill you.”

C’mon FDA, let’s get with it and approve low-glucose suspend!


Act Two: The Ophthalmologist — Yesterday, World Diabetes Day, was also the day to visit my ophthalmologist. Despite the fact that my appointments start chronically late, I like him. He’s a great doctor, and I respect that he treats me as a peer in taking care of my eye health rather than simply as a patient.

But as awesome as he is, his office staff doesn’t get diabetes. I’m sure that they see a bunch of patients with diabetes, as well as a bunch with glaucoma. [2] Surely they believe that trying to preserve vision is their highest duty, and I respect that. Frankly, I’m scared to death of going blind; it’s my biggest fear related to diabetes, and I appreciate that they feel like they need to stress the importance of good diabetes management.

Over the years I’ve tried to gently inform his staff about useful ways of approaching the diabetes issue. “‘What was your last BG reading?’ isn’t really a useful question for people with type-1 diabetes,” I told one tech, who was taking my health history. When she asked what a more useful question would be, I think she really was sincere. I’m not sure that one of the other techs was quite as interested in hearing me tell him that, “Yes, I know my BG values are too high. I don’t like them where they are either. And I understand the possible consequences for my eyes [and feet and heart and kidneys and man parts] from prolonged high BGs. I’m doing my best. It’s really difficult, you know.”

This time, I knew that I had to escalate the issue and take it to their boss.

As the doctor was reviewing the notes the tech took earlier in the visit he got to my A1c. “7.9. That’s lower than last visit,” he said with a hint of satisfaction. Yeah, I’m trying to bring it down, but it’s difficult. “What do you do for exercise?” I train for triathlons about 8-10 hours each week. “Wow. That’s great.” And then he blinded my dilated eyes with three different instruments.

At the end of the visit, I knew what I had to do. “Can I get a few minutes of your time?” He dismissed the person who had been taking notes. “I think you need to talk to your staff about diabetes. I don’t think they know the right questions to ask, and I get a lot of judgement from them. I don’t think they understand how hard it can be to get good blood sugars.” He seemed surprised, and I told him about the previous few interactions and that day’s event. The tech who checked my pressure, put the dilation drops in my eyes, and took my history had gasped when I said my A1c was 7.9 and then groaned when I countered that it was down 0.5 from last time and was the lowest that it had been in a year.

“How would you suggest that we handle diabetes in the health history?” he asked with complete earnestness. I suggested just asking what the last A1c was—or 14-day average or typical range of meter values for people who haven’t had an A1c recently—marking it down in the notes without comment, and moving on. I told him not to single any of his staff out.

“I’m sorry that you had those experiences. And thank you very much for telling me about how my staff can improve. We have an all-staff meeting in a couple weeks. I’ll let them know. Thanks again.”

Can I tell you again how much I really like my ophthalmologist?


Act Three: Diagnosed on World Diabetes Day — I learned this morning that a friend’s seven year-old nephew was diagnosed with type-1 diabetes yesterday on World Diabetes Day. I wouldn’t wish this way of learning about diabetes upon anyone, regardless of their age, but I’m glad that my friend was able to reach out and let me know about it so that I can help in whatever way possible.

While I offered myself to her step-sister as a resource for any kind of question, the truth is, I really don’t follow the “children with diabetes” (CWD) part of the diabetes online community very much. While I understand living with diabetes, I don’t know what it’s like to take care of someone with diabetes, especially a child. It’s just different.

But I do know people who were children with diabetes, and I know some people who have T1 kids. Some of them might even be reading this post. My hope is that you can help fill in the gaps in my knowledge of this neighborhood of the DOC. The next post here will be a special place for you just to share links to blogs and Twitter accounts of parents of CWDs along with any other website that has reputable information or is a really good on-ramp to the DOC for newbies.

Thanks for advocating and for helping me advocate! Together we make a difference for those of us with this shitty disease.


There you have it folks: three short tales related to advocacy all taking place around World Diabetes Day. But as Scully said, “World Diabetes Day is over. I still have diabetes. Dangit!” Yesterday we got some people’s attention; now the hard work starts.

We need a vaccine and a cure for every type of diabetes. We need to keep pressuring our governments for more funding into disease R&D. And we need a regulatory scheme that brings to market new technologies which help us manage the dozens of daily diabetes decisions more effectively.

And we need to make sure that basic treatment is available to everyone all over the world. As awful as it is that I can’t get a device with low-glucose suspend in the US, it’s worse for people who don’t have adequate access to insulin at all, even 90 years after its first therapeutic use. So go watch the The Life For A Child film and help stop diabetes worldwide. That’s the real message of World Diabetes Day.


1 — A.k.a., “Brokeback Bureau.” [Back . . .]

2 — Glaucoma, which I’ve had since I was a teenager, is my first chronic illness. Even though I’m up to three now after finding out that I have vitamin B12-deficient anemia a couple years ago, you needn’t worry that I’m trying to collect or hoard them. [Back . . .]

Posted in Diabetes, Health Care, Hoarding, NaBloPoMo, NaBloPoMo 2011 | 3 Comments

DiabeTees Day 2011

Posted on November 14, 2011 by Jeff Mather

It’s finally here! International DiabeTees Day, which conveniently coincides with World Diabetes Day this year.

I hope you’re wearing a diabetes-themed T-shirt today. If you are, take a picture of it and post a link to it in the comments below. Here’s my design: “America Runs on Insulin.”


Posted in Diabetes, I am Rembrandt, NaBloPoMo, NaBloPoMo 2011 | 8 Comments

A Long Time in the Making

Posted on November 11, 2011 by Jeff Mather

This morning, finally and at long last, Bernard Farrell (@BernardF on Twitter) and I met. He was one of the first people with diabetes that I found online. I really appreciated his commitment to diabetes technology, and I was eager enough to see this fellow Bay Stater that I put meeting him on my 101 Things in 1001 Days list.

It was definitely worth the wait! We will have to do it again.

Posted in 101 in 1001, Diabetes, NaBloPoMo, NaBloPoMo 2011 | 4 Comments

Reminder: International DiabeTees Day is Monday

Posted on November 10, 2011 by Jeff Mather

As you’re making your “To Do” list for the weekend, add these items:

  • Buy stuff to make a T-Shirt at the craft store
  • Make a T-shirt
  • Wear DiabeTees T-shirt Monday

That’s right! Monday is International DiabeTees Day. On World Diabetes Day wear your advocacy on your sleeve.

And anytime between now and Monday, take a picture of yourself (or somebody else) in the DiabeTee, post it somewhere, and add a link to it in the comments of the announcement post.

Posted in Diabetes, General, NaBloPoMo, NaBloPoMo 2011 | Leave a comment

This Is a Stick-up

Posted on November 10, 2011 by Jeff Mather

Friends, I need your help with an advocacy project.

I don’t usually feel like much of an advocate. I do my part, answering people’s questions about diabetes, teaching coworkers how to check their blood sugar and respect other people’s BG values, writing about what it’s like for me to have diabetes, trying to be a good example of what it’s possible to do with this chronic illness. But I have trouble getting spurred into action by all of the bullshit that’s in the media about diabetes or that people off-handedly say. I’ve contacted my Congressional delegation a few times, but I feel awkward commenting on things that I haven’t researched thoroughly.

There’s also this: While I know that every little bit counts, I really want to go big.

The most effective advocacy activities I’ve seen in the United States during my thirty-seven years have been flamboyant, loud, rowdy, or (dare I say) illegal. They reached out to grab the public’s attention because they were so unexpected or audacious: Tea Party rallies, Occupy Wall Street, sitting in old-growth trees, etc.

In my mind, the best advocacy in America during my lifetime has been the AIDS Coalition to Unleash Power, or ACT UP. Many people were dying of AIDS, the government wasn’t recognizing the problem, and the public was somewhere between apathetic and hostile. Those with HIV/AIDS, recognizing they had very little left to lose and everything to gain, engaged in civil disobedience in the mid-80s, garnered lots of media attention, and eventually moved policy.

I’m not saying we should occupy the FDA until they accede to our demands or get arrested by causing public disturbances, but I think we have opportunities to be more daring in our advocacy. In particular, I think we can learn a lot from guerilla marketing techniques and graffiti artists. (They essentially overlap.)

What’s our main problem? Media bullshit affecting public perception of diabetes. “Reverse diabetes.” “The cure for diabetes.” “It’s irresponsible to give people with diabetes ice cream.” I’m sure you can think of a dozen more. The problem is that people see the headlines and not our rebuttals. We have blogs—which are awesome—but they’ve got printing presses and distribution channels and advertisers.

What can we do? Change the message at the point of purchase. If we can’t stop publishers from printing incorrect information, we can let people know at the same time that it’s wrong and give them an alternative source. When people see a magazine or book saying “Reverse Diabetes,” we can change it to call shenanigans.

I’m not advocating destroying property. That would be more radical than I’m willing to do at this point in my life. I have a wife and a mortgage and a cat that all depend on me.

I’m talking about Post-It notes. Sticky notes with a message like “There is no cure for diabetes . . . yet” and containing a URL for better information.

My vision is that people with diabetes and our allies carry around a pad of these Post-It notes and when they see BS (or are in high traffic areas with acceptable surfaces) they slap on a sticky note (which is easily removable without any damage, of course).

Here’s where I need your help.

  1. I’ve registered a new URL for our “The More You Know” web site. (Okay I’ve actually registered three very similar domain names: diabetesfact.info, diabetesfacts.info, and diabetesfact.org.) But I’m not sure what I need to do next to set up a free WordPress site that uses those domains. I can Google it, I’m sure, but I’m hoping someone has done this recently. Help?
  2. What should the Post-It notes say? I figure it should be appropriate for a checkout stand or public forum. It should be catchy but not too snarky or offensive. It should be honest but not depressing. And it should make people want to learn more. (Here’s a good, but sadly NSFW, example of something that grabs you, so to speak, and dares you to check it out.) What do you think it should say?
  3. Does anyone have any experience with ordering custom sticky notes? I’m looking for a good deal.
  4. What should we put in the web site? I’m thinking a little basic information about type-1, type-2, and gestational diabetes; links to ADA, JDRF, and another group, such as DRI; and a couple of on-ramps for the DOC. Thoughts?

So what do you think? Would you carry around a pad of Post-It notes? And (more importantly) would you use them?

Posted in Diabetes, NaBloPoMo, NaBloPoMo 2011 | 11 Comments

Sitting Bull Understands

Posted on November 3, 2011 by Jeff Mather

Dear Diabetes Online Community:

It seems that I did the high blood glucose equivalent of “drunk dialing” last night. Clearly I would be a sad drunk if I drank alone.

I’m not apologizing—no need to, really—but I am saying that I’m not normally so moody about diabetes and choices and the future. I stand by everything I wrote, though in the light of day after my BGs have come down and talking to friends, it doesn’t seem so dismal.

I know, for me at least, high BGs make everything feel more dire. Once I get beyond 300 mg/dL, I’m pretty sure that nothing short of being around other people I like (or maybe a basket of kittens) will drag me out of the funk before the insulin can do its job.

The worst time happened in one of the western suburbs of Milwaukee in late October 2000. I was still on NPH, and I was just learning how to use Humalog. It was new enough that I was still scared of its power, and I tended to underdose for fear of overdosing. Late one evening, near the end of a week-long course about how to support the DICOM file format, I was feeling the effects of eating too many french fries from the unremarkable hotel pub. This hotel was in the middle of a pedestrian-unfriendly suburb, so I couldn’t just walk it off. It was late, and there was no one around to talk to. There were only bad movies and really nasty political ads on television.

So I did what I used to do back in the day. I started to write a letter. (You know, with paper and pen.) But between the loneliness and the high blood sugar and the feelings of inadequacy I was feeling at the time about trying to go to grad school, it was a bad scene. The letter-writing eventually devolved into me having a conversation with the postcard of Sitting Bull that had slipped into my stationary box.

By the next morning, everything was much better. Just like this morning.

I want to thank everyone, especially Lisa, Scully and Kim. You told me what I’m constantly trying to remind myself of: Even though life is choices, some of those choices are pretty awesome.

I love this picture of Martijn Verschoor taking insulin while racing that Team Type 1 posted on Facebook last week. It reminds me what we can aspire to and is so much more uplifting than another cyclist-plus-needles photo I like:

Remember: Thesis, antithesis, synthesis. That’s the way to approach life, grasshopper.

Posted in Cycling, Diabetes, General, Life Lessons, NaBloPoMo, NaBloPoMo 2011, Reluctant Triathlete | 1 Comment

The Dark Post about Disease and Choices and Shit. Subtitled: Maybe It Would Be Better NOT to Read or Post This After All, Except I Said I Would Post Every Day, and You’ve Been Drawn in by the Clever Title

Posted on November 2, 2011 by Jeff Mather

This post is dark. You’ve been warned.

Ever since LADA Awareness Week a couple weeks ago, I’ve been thinking a lot about having been diagnosed with type-1 diabetes as an adult. In particular, I’ve been considering how strange it is to go from being healthy—well, healthy enough—and then very sick—and then seemingly well again. When I was in the hospital, doctors and nurses asked me about my health, and I would say, “I’m well . . . except the diabetes, I guess.”

I lived more than twenty-four years without diabetes. That was long enough to do so many things, things I could certainly have done with or without diabetes. Before my diagnosis the idea of whether I could (or should) do those things had nothing to do with any kind of illness. Then, in a very short time, that easily-dismissed question was a constant part of the fabric of life.

When I think about diabetes, I don’t usually think about what-ifs or before/afters. It’s just the way things are; I can’t change it. But I do think about what it means to have my concept of myself changed in such an abrupt way. (As if, perhaps, I had awoken one day as a bug-like character in a Kafka novella.)

Lately I’ve also been thinking about the ways that I integrate (and resist integrating) the fact of diabetes into my concept of myself. First off, I’m not a dualist; there’s just matter. Mind is matter. Soul is matter. [1] And yet, diabetes still feels so foreign to me . . . so separate from me.

The defining characteristic of diabetes is usually put in terms of high blood glucose. In my mind, though, the defining characteristic should be “disease;” the high blood glucose is just the manifestation of the body’s failure to maintain homeostasis. Disease is the inability of my cells and systems to work properly, requiring on-going intervention to keep me alive and active. Of course, it’s hard work to mimic an endocrine system, but it’s been harder to accept that my body has failed me.

It has just recently occurred to me that these thoughts are probably related to my constant struggles with myself over my A1c, that little blood test which reflects three or four months of blood sugar fluctuations and purports to put into one number the quality of my diabetes management. [2] The number itself is just a number; it doesn’t judge me, though it suggests that I’m putting myself at increased risk for complications. My endocrinologist doesn’t judge me because of it, although I know she wants to help me lower it.

Even though I know I shouldn’t, I judge myself.

Ever since I went off NPH and onto the pump, my A1c has crawled steadily upwards. It’s gone up even more since I started exercising again. It defies the conventional wisdom, and it has had me wondering. Not about whether I’m trying hard enough—I know that I’m doing my best—but whether I’m making the right choices.

Life is choices. That’s been a fundamental principle of my life for two decades, far longer than I’ve had diabetes. You have to choose, and while you should think win-win, often you can’t have it all. Fine. I accept that. But the choices aren’t always easy to make or be happy with after the fact. Saying “no” can be difficult. Saying “no” to something you really want is agony.

I’m having trouble lately always believing that the range of choices is really as great as I tell people without diabetes, as we people with diabetes tell each other. “You can do this.” Of course! I can certainly make it through whatever diabetes throws my way.

Lately I’ve started to hear this mantra another way, though: “You can do this . . . but it has a cost. Is it worth the cost?” How do I know? How can I know?

On the way home from Simonpalooza in NYC, I had the talk with Lisa. What if I can’t have it all? What if I have to choose between two very important things? Triathlon has made me a better person, but in the training for it, I’ve let myself run high. I didn’t like it, and I didn’t mean to; it’s just what happened. Despite spending a lot of time paying attention to what my blood sugar did while I was exercising, I still don’t feel like I can predict what’s going to happen too well. So I start out higher than I would otherwise try to be. I’m not happy with it, and I know enough about control systems to suspect that those high readings are probably messing me up for the next twenty-four hours.

Where do I draw the boundaries between trying to stay alive as long as I can thanks to really good blood glucose control (by doing what my body should be doing) and living a full life—the life I would otherwise live—with a slightly higher A1c? It’s not either/or, of course; it’s a continuum.

So how do I find that balance? And what if? What if having a good A1c means not doing triathlon?

Time will tell. It’s probably a false choice. The only way I will know is to keep trying to do both until (and probably long past) it’s clear that I can’t.

And besides, my last A1c was down from 8.3% to 7.9%. I hope to keep bringing it down. I’m going to cowboy up and get back to working hard to figure things out, because that’s all I know how to do. But goddamit! it had better start getting easier—or I need to find a different way of thinking about things—because it’s kind of killing me to think that I could be shortening my life by doing the things I love.

See . . . wicked dark. Perhaps WordPress shouldn’t let me post anything when my blood sugar is over 400. I will probably regret this in the morning. Will you still respect me?


1 — To paraphrase Leibniz by way of Arcade Fire: My body is a cage that keeps me from dancing with the one I love, but my mind holds the key. [Go back . . .]

2 — During a #dsma twitter chat I once quipped that “A1c” is hell’s postal code. [Go back . . .]

Posted in Diabetes, NaBloPoMo, NaBloPoMo 2011, This is who we are | 10 Comments

3600 Yards

Posted on October 24, 2011 by Jeff Mather

Here’s a quick update about yesterday’s race: I’m a bit sore.

Was it the lack of arch support in my spikes? The dehydration? Maybe the exertion of running three miles before digging deep to find a kick that helped me pass five or six people in the last tenth of a mile? (I forgot to put that into my “Snap out of it! You should feel good about your race” calculus last night.) Who knows for sure? Not me. Whatever the cause, it’s here—slight, but here.

When I got out of bed today, my first thought was (as always) “OMG, it’s early!” The second was that I’m glad today is a swimming day instead of a running day. There was the aforementioned (mild) soreness, and also I knew I wasn’t going to run after work, since we have a customer visiting from 6:15 to 8:15.

When I realized on Friday that I was going to work later, I decided that I would also go to work later. This presented me with an opportunity: swim extra long. Most Monday, Wednesday, and/or Friday mornings, I swim for about thirty to forty minutes, starting at 5:45. Despite my early departure, the pool is open until 7:15. The longest that I had ever swam before was back when Lisa and I would swim for an hour on Saturday afternoons, but that was a while ago. I decided to see how far I could swim in an hour and a half.

Actually, my goal was to see if I could swim two miles. I had swam about 1.25 miles before, but most of my swims are about a mile. One day at the reservoir, somebody sprang the idea of swimming an extra mile, doubling our normal route. I really wanted to take them up on the offer, but I wasn’t ready. Physically I knew I could probably do it, but I was worried about the diabetes part. I didn’t have extra snacks with me—though I usually carry a gel or two in the ankle of my wetsuit—and I didn’t know what my blood sugar was going to do on a swim that long. I declined; September came around; it got colder, darker, and rainier; and I thought my chances were gone until next summer. Then today came along!

I was also going to use this swim to see what happens to my blood sugar on long swims. I brought a small chamois towel to dry my hands and my “exercise” meter with me onto the pool deck, along with a bottle of water. (Swimming is thirsty business.) A half hour earlier I had turned my pump down to 0% and eaten an obscenely large banana. At the time, my BG was 121. (Yay!) Half an hour in, Lisa had to leave to go to work. I took a break, gave her a goodbye smooch, drank some water, and tested: 161. (Yay!) Another half hour later, at around 1.25 miles, I tested again: 115. (A bit of a drop, but . . . Yay!) Finally, at 7:15 I stopped, looked around, saw that I was the last person in the pool, and tested: 120. (Woo-fucking-hoo!) When you take out the time when I was testing, I swam 2 miles in 1:21. And I did it all while rocking the happy BGs.

What a difference a day makes!

I’m still not a very graceful or efficient swimmer. I’ve swallowed my pride and started doing a few drills from the Total Immersion system, and I can start to feel a few changes coming on. In particular, I’m trying to be more of a “front quadrant” swimmer. Instead of being a whirligig-like wind-up swimmer with windmilling arms, I should try to keep one hand out in front of me longer. Lengthening out my body should help keep me streamlined and tilted correctly in the water, and I can already feel it starting to change where my power is coming from, as it moves from just my shoulders to include my core. It’s slow going, making these changes. I’m glad I have the rest of the winter to work on my form.


p.s. — My Internet-friend—hopefully one day my have-met-in-real-life-friend—Céline has been swimming a lot lately. It’s fun to watch someone have many of the same experiences that I’ve had.

Posted in Data-betes, Diabetes, Life Lessons, Running, Swimming | 3 Comments

There Will Be Mud

Posted on October 23, 2011 by Jeff Mather

Lisa is my sports psychologist. While she’s not a licensed mental health practitioner, she’s a good listener, asks probing questions, knows me pretty well, and has a basic philosophy I can get down with: “Snap out of it!”

So I kinda knew where the conversation was headed just after I started it while we were making dinner this evening.

“I need to talk to you about how I can feel better about my time today.” I ran a 22:57 at the Mayor’s Cup 5K race in Franklin Park, Boston.

“Well, it’s only about a minute off your best, right?” It’s true. I set my (most recent ten years) PR of 21:48 in Holliston over Memorial Day.

“And you weren’t that far behind your most recent race.” It’s true, in September I did 22:26. Of course, it’s on local roads that I’ve covered (easily) a hundred times, where I know each crack in the sidewalk, not to mention every uphill and downhill. But . . .

“But I know you feel like your times are going the wrong way.” It’s true. That’s part of it for sure.

“Today was a cross-country race, right?” Yeah. There was grass and mud and short, steep uphills and downhills to bomb and tight turns. It was glorious! At one point, a runner started to squeeze me toward a mud hole to keep her feet dry; a little (I mean tiny) shove from my arm kept everybody where they needed to be. I had forgotten how much I love the click-click-click sound of running spikes as they cross a road or cart path. But all that grass, mud, uphill/downhill, and turning certainly counts for a little time.

“It’s the diabetes, huh?” Yes. I couldn’t seem to bring my blood glucose down below 200 mg/dL (11 mmol) overnight, and it totally messed up my race-day plan. The plan was to lower my basal when I left home, eat a banana when I started to warm up, and run with happy BGs during the race. Instead, I left the house in the low-200s, got to the event in the mid-200s, and started the race at 318 (17.6). I ended up eating and bolusing for something small just before the start, but I was hungry and also a bit dehydrated from all the peeing that I’m sure was related to the highs.

“It’s tough, but you’ll get it figured out soon.” That’s my goal for this off-season. I want to learn how to run while eating and shooting insulin, but (honestly) it scares the bejeezus out of me. But nothing ventured, nothing gained; I’m just going to have to suck it up, eat something like what I hope to eat before a race or triathlon, and then go for a run. If I can’t really race over the winter, I can pretend.

“You’re too hard on yourself.” It’s so true. We all are in our little house. Well, maybe not the cat. He thinks he’s perfect.

Here are some pictures from my race today. As always, there are captions that you can see by clicking on an image, which also makes the pictures bigger. So why not start by clicking on the first and going through ‘em?

Posted in Diabetes, I am Rembrandt, Life Lessons, Photography, Running | 2 Comments

LADA – Day 3

Posted on October 19, 2011 by Jeff Mather

Turns out, I don’t know what else to say about LADA. I started the week not really knowing what latent autoimmune diabetes in adults (a.k.a., LADA, type-1.5 or T1.5) was but suspecting that I had it. Yet within twenty-four hours, I wrote what I had learned about it and decided that I probably don’t have it. Where could I go from there?

The plot—as they say—thickens.

It seems that there’s disagreement within the medical establishment about what LADA is. (This is a natural state of affairs in science and medicine.) Take today’s DiabetesMine article, which asks experts for their definitions of LADA. For some, LADA is strictly a subset of T1 diabetes. Others see it as appearing on a continuum between T1 and T2 or as sharing traits of both types. One researcher introduced even more new jargon types of diabetes: T1a and T1b.

Amy from DiabetesMine might say, “Oy!”

As someone who already takes insulin, knowing about LADA doesn’t really change my life. Of course, as an advocate, it’s good to know about these differences; it could potentially save the life of someone who was diagnosed with T2 but who actually has LADA. I’ve heard stories about this happening, and it sounds awful.

And that’s the real reason to have LADA Awareness Week: for people misdiagnosed to learn about LADA, get themselves tested for the antibodies that indicate it, and start a treatment strategy that works better.

Posted in Diabetes | Leave a comment