Okay, so let me clarify something: I’m a perfectionist with Type 1 diabetes. Of course I’m a control freak. But I’ve started to wonder whether my hypervigilance with diabetes care may have begun to bleed, if you will, into other areas of my life as well. 

This occurred to me at midnight on Saturday, as I was surfing the Home Depot website and trying to decide whether my husband’s spare nails and drill bits would best be contained by a shelf set with 39 drawers of multiple sizes, or if a straight 18-drawer set (with drawer dividers) would be a better bet. Previously I had spent fifteen minutes deciding exactly how many Oxo Pop Top food storage containers I required for my walnuts, pumpkin seeds and Splenda packs (and, of course, in what capacity) and agonizing over whether I should get a spice rack that fit in a drawer, one that sat on a shelf, or if a cabinet Lazy Susan would make more sense.

I was in what Barry Schwartz, author of The Paradox of Choice, would refer to as severe “optimizing” mode, where you try to make the absolute best decision for every single circumstance in your life. It was not enough to know, for example, that a particular shoe rack fit the dimensions of my closet. I needed to read through all of the customer reviews of this shoe rack, so that I could weigh its pros and cons, its strengths and its failures, to make sure that opening my closet each morning would result in a rush of organizational contentment rather than stress. Despite most retailers’ generous return policies, I wanted to make sure that every dollar, every penny I forked over would be money well spent. 

But even odder, in some ways, was my compulsion to buy these things to begin with. When I was a kid, my mother used to tease me (some might even say nag) about the state of my closet, or my seeming inability to make my bed every morning or carefully fold my clothes. When I was in college, I don’t remember vacuuming our dorm room more than three or four times a year. I gave no thought to the status of my underwear drawer. 

This all changed after I graduated from college, which also happened to be shortly after I was diagnosed with Type 1. A friend lent me a copy of Julie Morgenstern’s book Organizing From the Inside Out, which uses an acronym (Sort, Purge, Assign, Containerize, Equalize) to help you organize your life. First of all, it should be noted that I read that book in the fall of 2001 and still remember both the acronym and what each letter stands for. That’s scary. But it explains the fact that when people ask me what books have made a difference in my life — perhaps expecting something literary, or at least vaguely philosophical — I respond with Julie Morgenstern. 

I’m serious. I spent a weekend with Julie (or, more accurately, her book), going through my closet piece by piece (sorting), donating extra clothes (purging), and stacking them into categories (assigning). Then I paid a visit to the temple of organization — the Container Store — attempting to resist the pull of a display of rainbow-colored but totally useless plastic boxes (know what containers you need before you buy containers, Julie wisely advises). After accepting the irony of my purchases — nearly $200 spent on empty boxes — I put together my newly cleansed closet. Since then, I have been attempting to live the last step: equalizing, which basically means maintaining your organized status so that you don’t end on the wrong e: entropy. 

As I’ve grown older, my organizational fervor has only increased.  I now own several Swiffers, and often think, while conquering dust bunnies, of the pride the inventor of the Swiffer’s mother must feel at knowing the revolutionary effect her son or daughter has had on dusting. I have three Clorox toilet wands. (And I love each and every one.) I spend an embarrassing amount of time contemplating how to cross reference receipts. My husband makes fun of me, but I can’t help it: organization makes me calmer. It makes me feel more in control. It makes me feel sane. 

Which is why I’ve been wondering recently if the timing of my diabetes diagnosis and my descent into organizational obsession might be more than coincidental. With a disease that is able to resist all efforts of control, have I been driven to seek organization and order elsewhere in my life? Does the satisfaction I derive from my file cabinet in some way offset the frustration I feel when my blood sugar strays out of bounds? (And I also should note that I recently decided to organize my diabetes supplies, which were getting out of control — and there was indeed something very satisfying about relegating my supplies to shoeboxes, rather than allowing them to take over the cabinet in which they were stored.) 

I think it might — and I’m surprised it hasn’t occurred to me before. (I mean, I knew I did that with exercise, but that’s kind of obvious.) So what do you guys think? Are there non-medical aspects of your life that diabetes has affected? What do you do in your daily life to give yourself more of a sense of power and control? 

How’s that for a depressing subject line? It’s the topic of a mini-article I just had published in this weekend’s issue of Parade magazine. I’ll paste the text below, but the bottom line is that, in addition to putting you at increased risk of depression, diabetes (of both types) might just increase your risk of dementia as well. (As if you needed something else to worry about!)

I’ve consciously decided not to worry about it, since the most likely theories for the relationship are related one way or another to poor glycemic control. As is so often the case with diabetes, I have to trust that all the daily work I do to keep on top of my diabetes is going to benefit me in the long-run. That is, if it doesn’t drive me crazy first. . . . 

Anyway, here’s the text: 

Given the responsibilities that come with diabetes—the monitoring, the medications, the constant self-control—it’s not surprising that people who have the condition are twice as likely to suffer from ­depression as those who don’t. “It’s a 24-hour ­disease,” explains John Anderson, M.D., president- elect of medicine and ­science at the American Diabetes Association. “Anything that puts that type of increased burden on a person can increase the risk for depression.” 

But here are two things you might not know: ­People with depression are 60 percent more likely to develop type 2 diabetes, and a recent study from the University of Washington found that those who suffered from both diabetes and depression were twice as likely to develop dementia as people with diabetes alone. The exact causes for these findings are unknown, but experts theorize that inflammation brought on by high levels of stress hormones could lead to insulin resistance, and that damage to tiny blood vessels caused by high blood sugar might also affect the brain. It’s enough to make you, well, depressed. 

Luckily, there are steps you can take to prevent or ease depression. The first is to recognize its signs: In addition to the obvious (feeling sad or down much of the time), you might feel overwhelmed by daily tasks (including your ­diabetes care), experience appetite changes, or have unexplained ailments like back pain or headaches. 

If you suspect you may have depression, see your health care provider: She can give you a quick screening questionnaire and recommend treatment options, which may include counseling, lifestyle modifications like ­exercise, or therapeutic drugs. According to new research, treating both conditions together can result in a better outcome for your blood sugar and your mood. 

Last week marked the death of a person most of us have never heard of: a Canadian woman named Sheila Thorn.  While she may not have been a household name, Ms. Thorn will be appreciated by anyone living with Type 1: she was one of the very first people to receive artificial insulin — from none other than Frederick Banting himself. According to Diabetes UK, that made her likely to be the world’s longest-lived insulin-dependent diabetic (in the sense that she was an insulin-dependent diabetic who actually received insulin!). 

It’s sad that she’s gone — I would have loved to have interviewed her about her experience watching technology change over her lifetime (by the time she died, she was on a pump). But if nothing else, reading about her life inspired me to reflect on just how much has changed over the past 90 years since insulin was discovered — and just how recent that discovery was. Caught up in the daily frustrations of glucose management, I often lose sight of the fact that if I’d had this disease just a hundred years ago, I wouldn’t have survived. Let’s hope that the progress of the next hundred years is just as dramatic. 

Here’s a brief obituary of Ms. Thorn, from the BBC.

I’m writing this post with an IV in my arm and a blood glucose that’s 260 mg/dl and rising fast. I’m getting to the point in a high blood sugar where my mind feels cloudy and my mood is irritable and I wonder what the hell I’m doing to myself. 

No, I didn’t binge on birthday cake. I’m doing a follow-up study for a trial I was in over ten years ago when I was first diagnosed. I was for a drug called an anti-CD3 monoclonal antibody that attempted to preserve some of my few remaining insulin-producing cells (if you or someone you know was recently diagnosed with Type 1, you might be able to enroll in the latest round of the study — check out the links in this blog post). Anyway, in order to figure out how much insulin you’re still making, you do something called a mixed meal tolerance test (an MMT in the lingo), in which you drink a sugary Slim Fast-like drink, don’t take insulin, and then do a bunch of blood draws to see how much insulin your body’s able to produce. 

It’s not a fun way to spend four hours, but the result is interesting. And this time around, there’s a new twist: they’re trying to see if giving Byetta (the popular Type 2 drug) to Type 1s who still make a tiny bit of insulin might actually prevent blood glucose levels from spiking so high. The downside of this particular trial is that I have to do three of these tests in a row. But the upside is that it might provide some evidence of whether Byetta could be useful to a subset of Type 1s.

Research goals aside, though, I feel horrible. I hate having high blood glucose, and being in a hospital environment makes me remember the severity of this disease. I also just got my A1c (that’s one of the perks of the trial — they do some of your blood tests) and while it’s good, it’s not great (at least not by my standards), and it makes me feel bad. Even more worrisome? I’ve recently seemed to be exhibiting signs of hypoglycemia unawareness, where my body doesn’t really freak out much until I get into the low 50s. 

All this is to say, UGH. I’m having one of those moments where I start to question my overall diabetes self-care (which I had thought was pretty good!) and feel bad about not always having perfect blood glucose numbers, and then feeling completely paralyzed by the enormity and impossibility of the task of achieving said perfect numbers. And then I remember that my blood glucose is 270 and rising, and I just feel like shit. 

So. That is my whine-fest for the morning. Hopefully I’ll be a bit cheerier during tomorrow’s MMT. In the meantime, hello, Sweet Life community! (It’s been a while.) Despite the crappiness of this particular morning, I’m glad to be back. 

So, I finally got a new insulin pump, the Minimed Paradigm 523, otherwise known as the Revel. I didn’t want to get it. I’ve been hoping that DexCom and Animas might finally get the FDA approval necessary to come out with an integrated system — you know, one where your blood sugar shows up on your pump itself so that you don’t have to carry around a meter. They’ve been trying to get approval for quite some time and I must say, I don’t see what the hold up is: everyone (I hope!) knows that CGM data is not reliable enough to bolus off of, so I would still be double-checking with finger pricks; I just wouldn’t have to carry around the DexCom receiver. 

But the time had come. My Minimed pump was not only out of warranty by a year, but it had cracks all over its face. Not a good sign. Since I’ve maxed out my deductible for the year — and Animas/DexCom have not yet come out with anything — I decided to go for it. Several wonderfully hassle-free days later, I received my new pump in the mail. 

Here’s where I have to pause to be positive: I love my Minimed pump. I’ve been wearing one for nearly 10 years and I’ve found the company’s reliability and customer service to be superb. I am very grateful for my Paradigm and would never, ever want to go back to pure injections.

But at the same time, I’m very frustrated. I just had my insurance company spend several thousand dollars (I don’t even know exactly how much yet because the claim hasn’t been processed) on a new pump that, for all intents and purposes, is exactly like my other pump. Unless I really kick and scream, they’re not going to cover a new one for at least four years, once this one’s out of warranty. And yet, as far as I can tell, the only differences between this pump and my last one are:

-more safety checks as you prime (which you can’t turn off and which, if you’ve been pumping for ten years, are annoying)

-the ability to adjust your basal by .025 of a unit instead of .05 (which I do not need), and similar refinements for boluses

-active insulin is displayed on the same screen as the bolus dose. This is a nice feature, as I used to have to scroll back through my history to try to figure out when my last bolus was. But since I don’t trust the active insulin feature to begin with, I don’t pay much attention to it. 

-more flexible settings for the bolus wizard (which I also don’t often use since I’ve never found an insulin/carb ratio that works for me)

There are several other small differences between the two, but if you are not using the Minimed Guardian REAL-time continuous glucose monitoring system, they are really pretty much the same  (you can read more from Karmel Allison on some of those other differences here). And I find that frustrating. I know, I know, it’s hard to get approval for new changes, no matter how logical or safe — consider low-glucose suspend. And also, other than say, wirelessly integrating with a phone display, it’s tough to think of how a pump could be improved on its own — most improvements I can imagine would also require use of the same company’s CGM.  (It’d be great if Minimed pumps could pick up readings from Abbott meters, and even better if they would talk to other companies’ CGMs, though I know that’s very wishful thinking.) Nonetheless, every time a new iPhone comes out I can’t help but wish that pumps were updated with more regularity. And I also wish that Minimed made it more clear that most of the new features require you to be on the Minimed CGM system. As it is right now, the large “Revel” on the box makes it seem like it’s something very new and different — but the pump itself is a Paradigm 523, which is only one number up from the one I got nearly six years ago.

But enough whining.  On a lighter note, I found a section from the User Guide that made me laugh. 

“It is very important to look at your blood glucose readings as feedback regarding your diabetes management,” it says, “not as statements about you or your self-worth. Try not to have an emotional reaction to the numbers and do not judge them too harshly.” 

Okay, so far, so good — decent advice, even if it’s nearly impossible to follow. 

But then it says: “You will soon learn how to modify the numbers easily and precisely through insulin pump therapy.” 

Again, I love my insulin pump. But “easily and precisely”? Now there’s some wishful thinking.

As I mentioned in an earlier blog post, I spent last Saturday at a meditation workshop, part of which was devoted to the idea of “metta,” which is roughly translated as “lovingkindness.” 

Now, I should point out straight from the start that I hate the term “lovingkindness.” It reminds me of Berkeley bumper stickers (“Coexist!”) and makes me want to ask the universe — or at least the translator — why they couldn’t have at least included a space between the words. I should also admit that in the past when I’ve tried to do lovingkindness meditations — in which you’re encouraged to cultivate a sense of love and, yes, kindness toward yourself — I have occasionally instead been known to fill with rage and imagine kicking myself in the face and stomach, and then standing triumphantly above my body, which is lying curled up and crumpled on the floor.  Yes, I know. That’s really fucked up. I’m in therapy. 

Anyway, my point being that, while I have no problem feeling loving and kind toward others — I can start to cry just thinking loving thoughts toward my husband or parents, for instance — I am not so good at feeling them toward myself. It’s something I really am working on, and which I’ve gotten slightly better at since the incident described above. Nonetheless, this weekend, I was a bit worried when the teacher told us we were going to spend 20 minutes taking a walk as we repeated these phrases to ourselves: “May I be safe. May I be happy. May I be healthy. May I live with ease.” I wasn’t feeling particularly self-hateful, thankfully, but I just wasn’t sure how to internalize those sentences. No matter how I said “May I be safe,” I just didn’t feel it.

I did the meditation nonetheless, taking a walk around the neighborhood as I repeated those phrases to myself. And while the first three sentences continued to feel removed and abstract, I was surprised to find that I could feel the fourth one — may I live with ease.  It resonated somewhere deep inside me, and I think that has to do with my life with diabetes. Because let’s face it: diabetes robs us of ease. It prevents us from being carefree. It forces us to live with an unflagging awareness that a necessary and pleasurable activity — eating — could also lead to side effects that might kill us or someone we love. It means that we have to think constantly about something that non-diabetics never even consider. As I walked, I started to compile a rough list of the time each day when I think about my blood sugar: when I wake up. Before I eat breakfast. After I eat breakfast. Before I eat lunch. After I eat lunch. Before dinner. After dinner. Before I exercise. While I’m exercising. After I’m exercising. While I’m waiting for the elevator. Whenever I hear my continuous glucometer (thanks, DexCom, for interrupting this post). While I’m standing in line at the coffee shop. While I’m doing physical therapy on my shoulder. I sometimes even sleep with my glucometer next to me on the pillow. 

Because of all this, because of this constant un-ease caused by diabetes, the phrase affected me in a way that no other lovingkindness meditation has. Repeating “May I live with ease” to myself made me internalize just how difficult it is to do so when you have diabetes. Instead of imagining kicking myself, I felt the accumulated weight of all the attention I pay to my blood sugar every day, and all that I do to take care of my health. And I felt a bit of gentleness toward myself because of that burden. I felt an openness toward the part of me that tries so very hard, every day, to manage my blood sugar as well as I possibly can. The part of me that works out when I don’t feel like it, and resists eating foods I would otherwise love to eat, and wakes up at 3 in the morning to prick my finger. I felt an awareness of the scabs on my fingers and the bruises on my stomach and the scar tissue on my hips and I felt tenderness for the person enduring them. It’s strange to say it, but recognizing the difficulties of living with diabetes actually helped me feel a bit of love for myself.  

I just wanted to share that — and encourage everyone out there who’s either living with Type 1 or helping someone else who’s living with Type 1 to spend five minutes or so repeating these wishes for yourself and for others whose lives are touched by DM. I’ll start by wishing them for you:  May you be safe, may you be happy, may you be healthy — and may you live with ease.

Since it’s November 14th, I feel like I’m supposed to start this blog post by acknowledging that it’s International Diabetes Day. But since diabetes isn’t a typical holiday, I’m not sure the best way to phrase this. “Happy World Diabetes Day!” doesn’t seem quite right. “Wishing You Peace This Diabetes Season” is a bit kinder, but still off. “Diabetes Day 2011: Condolences To You And Your Family” probably wouldn’t sell well at Hallmark. Here’s the best I’ve got: I went to a meditation class this weekend in which they had us practice the mantra “May I be safe, may I be healthy, may I be happy, may I live with ease” — and though I had difficulty internalizing the words, the phrase “may I live with ease” seemed like a particularly appropriate aspiration for life with diabetes. So, to all you people with diabetes out there, today is international diabetes day. May you live with ease.

Anyway, the title of this post refers not to a diabetic philosophy (though I guess I just went there), but to something I’ve discovered in my post-surgery recovery. As you may know, I had shoulder surgery about 10 weeks ago, and I’m still not able to go back to my normal fitness routine. When I first heard about what my limitations would be after surgery (namely, nothing AT ALL for six weeks), I freaked out a little bit. “But how can I control my blood sugar without exercise?” I asked my surgeon. “My glucose levels will be crazy.” 

My surgeon, who thinks (probably correctly) that I myself am a bit crazy, eventually responded by cutting back my no-exercise time to five weeks, saying something like “Diabetes gives you enough trouble — I can give you one week.” I appreciated this, but after I got out of the operating room I was still bracing myself for five weeks of horrible high blood sugar, first from the pain, and later from the lack of activity.

But bizarrely, they did not occur. I ended up having five straight weeks of amazingly consistent blood sugar. In retrospect, I think part of this was due to the fact that since I was not exercising, I was also not very hungry: I ended up losing about five pounds without trying (granted, much of this weight was muscle lost from my right arm, but I’m pretending it was from my thighs). And not eating much (or craving any foods) also means that it’s not so tough to manage your bs. For me, at least, not exercising leads to not eating which leads to great blood sugar (and a slenderness due to reduced muscle mass).  How’s that for an absolutely horrible take-home message?

Of course, I am not into leaving well enough alone and as soon as those five weeks were up, I went straight to a spinning class at the gym (my logic being that I’d been cleared for aerobic activity, and if I stayed sitting, I wouldn’t be using my shoulder). I managed to pull on some spandex and showed up at a Sunday morning class, a little nervous because it had been so long since I’d done anything remotely athletic. This fear proved founded: about fifteen minutes into the class, I felt like I was going to throw up. 

Part of the problem, it turned out, was my endurance. Part of it was that I’d unknowingly signed up for a teacher who does not give breaks, ever (it’s basically a straight 45 minutes). But part of it was that my blood sugar had begun to plummet, tanking somewhere around 50 and only making it back up to 70-something, despite a packet of Gu and some sugar tablets. I hopped off the bike and stood by the lockers for a bit, coming closer to feeling like I might faint than I almost ever have (I’m not sure which of the three above factors was the most to blame). Then, after the class, my blood sugar shot up. 

That was by far the scariest exercise-related low I’ve had recently, but I’ve noticed that adding exercise back into my life actually makes diabetes more challenging, not less. I’m realizing that some of the questions that I used to deal with all the time evaporate if I cut out exercise. For example, if I’m taking an 8:30am spin class, there’s no good way for me to eat breakfast beforehand: I can either underbolus, leading to a temporary high before the exercise brings my bs back down, or give myself a normal bolus and risk tanking once I start moving. The alternative — not eating breakfast — also doesn’t make me feel good. Cut out exercise, on the other hand, and I can eat breakfast AND give myself an effective bolus. Amazing! 

I’m not saying I now believe that exercise is bad for blood sugar — anyone can tell you that taking a walk after a meal does great things for insulin sensitivity. And the health benefits of exercise outweigh the diabetic challenges. But it’s interesting to see that the kind of exercise I typically do — namely, intense stuff, often with lots of weights — actually complicates my diabetic life, rather than making it easier. It makes me wonder if there are any other other hard and annoying activities that I force myself to do every day that it might actually be beneficial to eliminate.

As Jess pointed out in a recent, really touching post about JDRF’s 1-in-20 campaign, the FDA is in the process of putting together a guidance document for the development of a would-be artificial pancreas system — a combo insulin pump/CGM that would take much of the thought and stress out of life with diabetes.  (Insert a pause to consider how amazing and wonderful that would be.) Believe me, I know that FDA guidance documents are hardly fun reading — I’m working on a book about the history of nutrition and have been researching the history of supplement regulation for the past week and a half. But this is a very important issue for anyone who knows someone living with Type 1, and JDRF is trying to drum up public support to encourage the FDA to streamline the process (safely, of course). If you haven’t signed it already, here’s another link to JDRF’s petition on the matter. 

Anyway, I wanted to call attention to another issue currently under consideration by the FDA that also has to do with an eventual artificial pancreas: low glucose suspend systems. Low-glucose suspend-enabled pumps, which have already been available in Europe for several years, would do exactly what their name implies: stop the delivery of insulin if a person’s blood sugar dropped too low. You could override this suspend, of course, if your blood sugar weren’t actually low. But if you indeed were dangerously hypoglycemic, this feature could prevent the situation from getting worse. 

To me, this sounds like a no-brainer: first off, if you’re not eating anything, suspending basal insulin for two hours seems unlikely to lead to intense hyperglycemia. And even if your blood glucose ended up elevated for a few hours, would that really be worse than, I don’t know, dying from hypoglycemia? (I point you again to Jess’s post.)

So I was disappointed that the FDA’s draft low glucose suspend guidance document, which came out in June, was so restrictive. It inspired critical comments from JDRF, Yale’s section of endocrinology,  the American Association of Clinical Endocrinologists, American Association of Diabetes Educators,  and the American Diabetes Association, all of whom voiced similar concerns which I think are important for people with Type 1 to be aware of. Basically, after praising and thanking the FDA for devoting the time to put together guidance on such a very important topic for the treatment of Type 1, JDRF — to use one example — “strongly warned that the guidance is unreasonable and will further delay the availability of lifesaving technology to patients who need it.” Their core concerns (I’m quoting directly from the press release): 

• “The proposed clinical study pathway is excessively burdensome, and would further delay patients’ access to the technology. Without changes, this guidance will require multiple clinical trials (inpatient and outpatient) involving a large number of subjects in order to show statistically significant differences in preventing hypoglycemia. This would be an excessive hurdle in order to make available to patients a simple but important feature which shuts off insulin when someone has or is near severe low blood sugar (hypoglycemia). Instead, the LGS systems should be approved based on data showing safety and equivalent glycemic control. Clinical effectiveness data among larger populations could be collected in post-market studies.

• “There is a lack of clarity in the use of continuous glucose monitors (CGM) in LGS studies. JDRF is pleased the guidance allows the use of CGM data in evaluating the safety and effectiveness of LGS systems. The use of any other outcomes would be considered impractical by the diabetes research community. FDA must express a commitment to the use of CGM data, rather than indicating it may change its standard later after studies have begun.

• “The proposed guidance requires that substitution of substantially equivalent components in the LGS system would be allowed only if additional separate clinical studies of the system for each component variation are conducted. This requirement would severely limit choice for patients and discourage the development of technologies serving a critical public health need. FDA needs to adopt more efficient means to allow sponsors of clinical investigations and holders of approved premarket approval (“PMA”) applications to utilize multiple versions of components or make modifications to their LGS and artificial pancreas systems.”

Now, I know that’s a lot of FDA speak to deal with. But the bottom line is that the FDA appears to be creating guidelines that would be applicable, roughly speaking, to both a low-glucose suspend system AND an actual artificial pancreas. But the two systems’ safety issues are very, very different: the biggest risk of a low-glucose suspend system — versions of which are currently available in more than 40 countries — is temporary hyperglycemia. It would be very hard for such a system to kill you, or even have a noticeable effect on your A1c. 

A full automatic pancreas system, on the other hand, would regulate your blood sugar for you. That would include suspending insulin delivery if your glucose dropped too low, but it also would include giving you insulin if your blood sugar were to rise. Too much insulin, as we all know, can kill you — so an artificial pancreas system needs to have a lot of safety redundancies in place. It’s a potentially deadly piece of equipment, and I am very grateful to know that whenever a system does come to market, it will have gone through a lot of testing and research. 

I don’t know why the FDA seems to be conflating these two technologies, and while I really am grateful that they’re working on regulatory guidelines, I am disappointed that the proposed guidelines for low glucose suspend systems are so bizarrely restrictive (again, especially since Minimed’s version of the product has been available abroad for several years). The good thing is that this guidance is only a draft, and there is still time for public comments. If you feel similarly and want to encourage the FDA to reconsider its approach, here’s a link to their contact page. I’m not entirely sure when they published the draft in the Federal Register (since they are technically only accepting comments till three months after the fact) — but the FDA typically has to go through several rounds of public comment before any draft guidance becomes official, so it’s still worth making your voice heard. 

Also, this helps give context to JDRF’s artificial pancreas petition — the FDA is supposed to come out with a draft guidance document for artificial pancreas systems in December, and JDRF is trying to ensure that, while adequately cautious, those guidelines are not overly restrictive.

You may have read on ASweetLife last week about how ten members of the Team Type 1-SANOFI running team are currently running across the country (yes, the United States) to raise awareness of Type 1 diabetes. They started last week and are due to finish on World Diabetes Day, November 14. 

But what you may not have heard about is TrialNet’s partner initiative to screen 3,000 people — one for each mile Team Type 1 is running — for increased risk of Type 1 diabetes. I’ve written about the importance of this screening (and of an exciting new trial led by Dr. Kevan Herold at Yale) in Popular Science. But here’s the basic gist: it’s now possible to predict with more than 75 percent accuracy whether someone will develop Type 1 within the next five years (it can sometimes predict it up to 10 years out). TrialNet offers free screening to anyone with a relative with Type 1 (since having a relative with Type 1 gives you a 15-fold increased risk of developing it yourself). If they get 3,000  new participants, it will bring the total number of people involved in TrialNet’s research programs to 100,000. That’s pretty amazing. 

The tricky part of the decision to get screened is, of course, the question of what to do if your results come back positive. At the moment, there’s no definite way to prevent Type 1. But I strongly believe that it’s still worth doing. Not only will it make you much more attuned to the signs of Type 1 if and when it develops (reducing the time you spend dangerously hyperglycemic), but you have the chance of signing up to participate in a research trial to find an effective prevention. The study I mentioned above, for example, is investigating whether teplizumab, an anti-CD3 monoclonal antibody that’s been studied for more than 25 years (I myself did a study with Herold right after being diagnosed that used the same drug, and have managed to retain a bit of beta cell function for over a decade) might help prevent Type 1 from developing in the first place. Very exciting.

The screening will obviously be much more appealing once we actually figure out a definite way of preventing the disease, but we’re never going to reach that point if more of us don’t step up to the plate now. And, as a personal benefit, it gives you access to and care from some of the country’s leading diabetes experts. Having gone through a research trial myself, I can say without a doubt that the experience was worth it.

Having also spent the summer after my diagnosis biking across the United States (for Habitat for Humanity), I can also say that a. this country is really freaking big, and b. those runners deserve all the support and admiration we can give. 

If you’re interested in participating in TrialNet’s initiative (just for the screening; the research trial are separate), here’s some more info: 

TrialNet risk screening available virtually anywhere

TrialNet risk screening is available at nearly 200 sites across the United States or anywhere via mail. You can find a TrialNet screening location by completing the online screener. To request a test kit by mail, just contact one of our clinical centers listed here. The test kit can be taken to a local doctor’s office or lab to collect a blood sample for analysis by TrialNet’s lab. Risk screening is available at no charge to those who are:

1. Age 45 and younger who have a parent, sibling, or child with type 1 diabetes, or
2. Age 20 and younger who have a niece, nephew, aunt, uncle, grandparent, half-sibling or cousin with type 1 diabetes.

First, a confession: I am writing this post as my blood sugar, having dipped down to 52 this morning during physical therapy, is shooting up with a double arrow on my CGM, 174 mg/dl and climbing. (And what did I eat for breakfast? An apple with peanut butter. As I have eaten every day for the past three weeks.) I also just started physical therapy yesterday (after having shoulder surgery to repair a torn labrum) and have found that some of the stretches are so painful that I actually feel nauseated afterwards. Point being, I’m a little cranky. 

But regardless of my current mood, I was frustrated by an article in yesterday’s New York Times called “More Ways to Cope With Type 1 Diabetes.” I’m always happy to see major newspapers devoting coverage to Type 1, and I was intrigued by the article’s headline. But when I read it, I was surprised by how very un-new all its information was. After pointing out how expensive and frustrating it is to live with diabetes and how tight control has been shown to reduce the risk of complications, it talks about how it is “now possible” to measure a substance in blood called glycosylated hemoglobin with a HbA1c test to see “how well blood sugar has been controlled.” Really? An A1c test is news? The article then says that people with Type 1 have more dietary flexibility than they did in the past, and that “the trick is to balance carbohydrate intake with insulin requirements and, at the same time, consume a well-balanced diet.”  Oh, and exercise matters, too. 

That’s it. Now, as a journalist myself, I know that writers do not have control over the headlines that get assigned to their stories. So it’s not as if Jane Brody was like, “Yes! The hemoglobin A1c test is news!” But at the same time, I was disappointed that an article devoted to Type 1 — presumably the biggest audience for the piece — simply said things that anyone who’s spent a week living with the disease knows already. If the Times really wanted to talk about new ways to cope with Type 1, how about a mention of continuous glucose monitoring systems?  Or medications like Symlin? Or JDRF’s efforts to support research for an artificial pancreas? Or a mention of some of the carb-counting apps like Calorie King that you can get on your phone to help you adjust to new foods on the go? 

I know that November is national diabetes month and, as such, publications are trying to up their diabetes coverage — which is great. But I hope that some of that coverage also touches on information that’s of interest not just to the general public, but to people who actually live with the disease.