In Praise of the Diabetes Contact List

This week, I wanted to write more about continuous glucose monitors[1] (CGMs), but I think I’m going to veer off the CGM path[2]. After all, when I started this blog, I imagined it following my week-by-week living with Type 1 diabetes[3], and for the most part I’ve adhered to my initial intent. Therefore, because during the past week I’ve done more diabetes-related corresponding than CGM-thinking, I’ll move in that direction.

Lately, I’ve been on the phone a lot with insurance providers, durable medical equipment suppliers, the pharmacy, and doctors’ offices. I’ve also been sending e-mails to my doctor, my certified diabetes educator[4] (CDE), and my dietitian to keep them up to speed on changes in my insulin[5] numbers.

You see, here’s where I have to laugh a little bit. I get through the hectic holidays without any problems related to diabetes, and just when my self-management appears to be rolling along smoothly, I end up getting a phone call or an e-mail or a series of blood glucose readings that throw everything into disarray.

What disarray? It began when the University of Michigan (my employer) changed health-care providers effective January 1. The durable medical equipment (DME) supplier I trusted and who had excellent customer care would no longer be covered. The diabetes disarray continued when I needed to reorder several medications through my pharmacy, one of which was a refill on an old prescription provided by a doctor I no longer go to. This meant tracking down by phone someone who could look up an old prescription for me. The icing on the disarray? An unsettling and confusing past week during which I’ve had to lower the basal rates[6] on my insulin pump[7] by at least half to avoid hypoglycemia[8], which meant some correspondence with my endocrinologist and CDE. (The running joke in our household is that I’m becoming cured.)

I speculate that my lower basal rates are due to increased exercise[9], but it could be that they’ve plummeted in part by my cutting out excessive amounts of diet Coke. I did drink a lot of the stuff—and I mean I did drink a lot of the stuff. And that is also a lot of caffeine. Who knows if that had any effect on my basal numbers. (As with everything, there have been studies[10].)

Because of my experiences this past week, I thought that it might be good to remind people who are not keeping all of their important diabetes information in an easy-to-access place to think about doing so. For me, the most frustrating part of having diabetes is dealing with those wonderful industries in existence to help me manage my condition—love/hate at its best. Hospitals, doctors’ offices, medical equipment providers, pharmacies. Yeah, I couldn’t live without them. But still.

One way, then, that I’ve found I can cut the time I spend on the phone, as well as cut the stress level and irritation that accompanies those phone conversations, is to keep a list of any possible information I might need—and keep it in an easily accessible place. (I also try to remind myself that the person I’m speaking to on the phone or that the representative I’m e-mailing really has no control over company policy. Therefore, if something seems asinine, it’s not that person’s fault. Being as pleasant as possible, as friendly as possible, gets you a lot farther a lot faster.)

As for what you might want to keep on your list, may I suggest, in no particular order:

In short, all of those things that seem easy enough to leave scattered about in various places, but which, with a little forethought, can help prevent serious frustration later on. I’m amazed at how much of a diabetes-related paper trail I’ve amassed in only 10 months.

And know this: How you keep your list doesn’t matter. Do it in whatever way suits you best. Store it on your computer or your PDA. Maybe you use an iPhone or a Blackberry. Or keep a list in your purse or backpack or wallet, or even a manila file folder.

I don’t keep one long list; instead I have a few different files scattered here and there, as well as some sheets with pertinent telephone information tacked up in my office at work. These are where I know I can get to them. I also have a remote file server that I can access from work, home, or wherever, and my wife has a backup of all important numbers on her iPhone.

This is a pretty low-maintenance job for those of us with chronic conditions. I only update the lists when things change, and for me it’s a kind of diabetes security blanket. It’s good to have this information around because who knows under what circumstances you may need to go above and beyond a normal ‘scrip refill or humdrum appointment scheduling (as lately I’ve been finding out).

You know as well as I do that there exist a whole host of things that in theory should be simple but in practice are major headaches. A few well-placed and detailed lists can lessen the burden.

  1. continuous glucose monitors:
  2. CGM path:
  3. Type 1 diabetes:
  4. certified diabetes educator:
  5. insulin:
  6. basal rates:
  7. insulin pump:
  8. hypoglycemia:
  9. exercise:
  10. studies:
  11. Family Centered Experience:

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Eric Lagergren: Eric Lagergren was born in 1974 but didn’t give much thought to diabetes until March 2007, when he was diagnosed with Type 1. He now gives quite a bit of thought to the condition, and to help him better understand his life as a person with diabetes, he writes about it. Eric is the senior editor for the Testing Division at the University of Michigan’s English Language Institute in Ann Arbor. (Eric Lagergren is not a medical professional.)

Disclaimer of Medical Advice: Statements and opinions expressed on this Web site are those of the authors and not necessarily those of the publishers or advertisers. The information, which comes from qualified medical writers, does not constitute medical advice or recommendation of any kind, and you should not rely on any information contained in such posts or comments to replace consultations with your qualified health care professionals to meet your individual needs.