Recently I sat down with my CDE to go over pump settings and the like. We went over the Dexcom reports I had prepared from the 3 months before getting a pump and the 3 months afterward. She congratulated me on the pretty graphs and shared her frustrations with patients who don't really understand how important it is to control the beast. From her mid-30's lawyer with 3 young kids, wife, busy career and a pump which he doesn't use very well since his A1C is 9 or the teenager in ICU for the 3rd time in DKA. Her question to me is how do you stay motivated and engaged with taking care of yourself ?
This is how I answered her.
I have been thinking about your question about how to motivate PWD or what to tell the PCP’s who are going to be treating an ever increasing number of PWD. The most important force in helping me and motivating me to take care of my D is the online community. A CDE or PCP or endo (love all these acronyms) will say “you need to test your blood sugar regularly”. A PWD will say “you need to check your blood sugar regularly”. While it seems a minor thing, a test is something you can pass or fail, a check is something you can act on to improve. It is these minor things which can change the tenor of an office visit and make it a positive of negative experience. I really wish there were flyers in every doctors’ office for the DOC. I am partial to the ones of which I am a member, www.myglu.org which is specifically for T1’s and www.tudiabetes.org which is for anyone touched by diabetes but there are a bunch more that cater to particular segments of the D population from parents and caregivers to groups for the various sub-types of T1, MODY,LADA etc. This weekend I am meeting with the Boston contingent of tud. We’re getting together at a coffee shop on Newbury street. I am riding in to town with a woman who was dxed 9/15/1962 and uses a mm pump and cgm. We’ll have a lot to talk about especially the “good old days”. Without the DOC, I would not have the opportunity to even know this woman existed let alone drive to Boston with her. Connecting with other PWD is a great way to learn and teach ways to deal with the day to day grind.
I understand the reticence to steer patients to the internet but a few well placed flyers of trusted sites could go a long way to help.