Jan 31, 2008

In Praise of the Diabetes Contact List

Eric Lagergren

This week, I wanted to write more about continuous glucose monitors (CGMs), but I think I'm going to veer off the CGM path. After all, when I started this blog, I imagined it following my week-by-week living with Type 1 diabetes, 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 (CDE), and my dietitian to keep them up to speed on changes in my insulin 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 on my insulin pump by at least half to avoid hypoglycemia, 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, 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.)

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:

• For emergency purposes, obviously you want names and phone numbers (in addition to 911) of who you or those close to you can contact in case something happens. This should of course be in plain sight and easy to find in moments where "calm and collected" do not describe the mood.
• For nonemergency purposes, I keep the names, phone numbers, physical addresses, and (if possible) e-mail addresses of any of the health-care people I work with or related people such as my dietitian. In my e-mail program, I have a "Diabetes" folder with separate subfolders for all of my e-mail correspondence regarding diabetes-related things (and a few other folders, as well). I keep this correspondence as a record of what's been happening. The folders: (1) certified diabetes educator; (2) endocrinologist; (3) primary care physician; (4) therapist; (5) durable medical equipment supplier; (6) insurance; (7) dentist; (8) ophthalmologist; (9) blog; (10) Family Centered Experience.
• For those of you using an insulin pump, I recommend keeping a sheet, or your most recent invoice, that has the names of every item you need for your pump and, if at all possible, the reference numbers for each item.
• The names of all drugs you're on and their reference numbers, and who to call to get refills.
• Your health-care card number; your insurance card numbers, group number, and so on...

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.

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