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.
JMHO

Views: 95

Comment by rick the "Blogabetic" on October 12, 2013 at 2:07am

Clare, I think motivation comes in many different forms. But I also think TUD works because of the kindness and generous way we allow PWD to be well PWD. Thank s for your epic comment. It reflects who I love to blog and why I love this beautiful site. Thanks for the uplifting blog this morning.

Rick

Comment by Jacob's mom on October 12, 2013 at 4:30am

good morning clare! I agree that the online community is valuable. And I totally agree that although a good connection with your doctors is important, that is not enough to sustain you in the long run, although I strongly feel moving away from pretty mediocre care to wonderful care at the joslin will play a big role in how jacob handles his D, he feels heard, valued and supported by his endo team. I still feel motivation of any kind needs to come from within it is a shift in your thoughts away from fear and towards acceptance. I once suggested tu to a father of a type 1 son who was about 12 years old he said I spend way to much time on the computer already meanwhile he didn't trust his child to carb count or make any decisions himself he had FEAR all over him. an ugly beast indeed. So how to get past fear, blaming, self pity and moving towards acceptance, self empowerment and the wear with all to handle what ever comes good and bad that is the shift. I do think offering more psch support would be very valuable for all diabetics and parents of kids to help them cope and to foster a healthy attitude would be good. of course knowing you are not alone, and connecting especially so easily from the comfort of your own home is huge. So I absolutely agree, but accountability and self reliance are huge too. Best wishes, Amy

oh and Jacob has never connected with other type 1's, but he's doing great, his personality is a good fit and his yoga mom helps a bit!

Comment by Clare on October 12, 2013 at 5:51am

Thanks Amy - glad to hear Jacob is doing well - while he does not connect with T1's him mom does so by default he actually does connect. I hope since he will soon be going to college he considers the http://collegediabetesnetwork.org/ it seems to be a great organization again to connect PWD. I do know I wish I had this kind of support network when I was growing up it probably would have made my teenage years a lot less tumultuous.

Comment by Jacob's mom on October 12, 2013 at 8:01am

I agree clare, he benefits from the knowledge and support I have gained here. I actually kind of like Jacobs style treat it and forget about it what's all the fuss! I guess typical of the teen confidence I don't need your help but he actually does get it and I am feeling proud of his good choices lately. we are all different with different needs and pathways to better health and well being. I am so glad for you it seems you have made a huge shift in the past year or two!

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