I have to share an incredibly frustrating experience with you and am hoping that by sharing this story, I can make an impact on at least one person when talking about what it means to have “good diabetes control.”
In January, I received a letter from the Department of Motor Vehicles that contained a medical information survey. In 2006, I almost passed out one night in class. This episode had nothing to do with my diabetes – my blood sugar was fine. In fact, it had to do with…. a recurring feminine condition that many women experience each month. ANYWAY, I had about three weeks to deliver the survey to my doctor, have her fill it out, and send it back to the DMV or else my driver’s license would be suspended. If you know me at all, you will know that I am a very punctual person and I immediately arranged for the survey to be sent to the Medical Office at Kaiser. I was told that the survey would be filled out and taken care of within 7 to 10 business days from then – PLENTY of time before the form was due back at the DMV. Whew! I crossed that off my list and didn’t think about it again.
Three weeks later, on the night before the form was due, my doctor called me at home to inform me that she just received the survey, and looking at my records, and the way the survey asked the questions, it was likely that she would have to report that my diabetes is not under control and that my license may be suspended until it is.
My jaw dropped. My heart started racing. Tears swelled in my eyes. I couldn’t believe this was happening. The thing that hit me the hardest was how matter-of-factly she said this to me.
For someone who does not have diabetes to imply that “all I needed to do” was get my A1C under 7% to drive and to say it without any compassion got me so frustrated…. Diabetes is a high maintenance chronic disease. Everyday is a new challenge with about a million decisions that a non-diabetic doesn’t ever have to consider. OK, maybe I’m exaggerating a little bit – but there are a lot of things that non-diabetics really don’t need to think about. Like finding a way to bring your meter and glucose tablets with you when you want to go on a run with your dog. Or checking your blood sugar and injecting insulin while wearing your wedding dress at your reception! Not to mention trying to fit all of that into a tiny beaded purse. Or taking your night-time insulin while out at night with your friends, celebrating a birthday, listening to music at a show, or at the movie theater. Or having non-diabetics point out when you’re eating a tiny piece of cake to celebrate your coworker’s new job. Wagging their finger at you like you have committed an unforgivable sin. I could go on, and if you have diabetes, I’m sure you could too.
Before I go further, I appreciated the phone call from my doctor. She was calling to ask me to go to the lab on Sunday and get a fasting blood sugar, full panel, and an A1C test. My last A1C was slightly above 7%, which according to her was the national standard for having good diabetes control. Because my A1C was above this golden number, she would have to say that my diabetes is NOT under control. I was floored. How could all of this be hinged on one number?? And all of this because of my period! It wasn’t even related to my diabetes!
I went to the lab. I got my fasting blood sugar (117). All my lab results were good, but my A1C was still above 7%. It had gone down one tenth of a percent, but that wasn’t good enough… I felt defeated. My dad tried to help by offering to pick me up from work and drop me off. Come on! I’m 29 years old, married, and my dad wants to drop me off and pick me up from work?! No way. I appreciated his offer, but I didn’t even want to consider that.
I couldn’t sleep that night. I kept thinking about what would happen. Finally, at about 4 AM, I got up and sent my doctor an email. I asked her to frame her response in such a way that the DMV understands that the A1C is not the only indicator of good diabetes control. When I was first diagnosed with diabetes, I went to type 1 support groups and met a man whose A1C was 5.9%. That is an excellent number, however, in his case, it was just that – a number. He revealed to the group that he struggles with severe lows (in the 30s) several times a week, and then bounces high in the 300s, and this is a typical week. Well of course if you take an average of his blood sugars, the number will be pretty “good”, but it is pretty clear that this man did not have good diabetes control.
When I was first diagnosed, I was very aggressive about learning how to manage my diabetes. I got on the insulin pump 6 months after my diagnosis and kept my diabetes under extremely tight control. My A1C was 6.1% and I have to admit that I would have more frequent lows. My doctor suggested loosening up just a little bit so I could avoid the lows, and I did. I went on a vacation from the pump, and am going back on it in about a month. I knew this before, but have experienced it first hand now, that the insulin pump truly allows for greater and more precise control than Lantus can offer me.
Anyway, I was appalled that this one number could trump all the other things that I do in my life that indicate how much I care about not just my own health, but the health of others. This blog, my volunteer work with the Diabetes Society facilitating type 1 teen support groups, my involvement with the American Diabetes Association, the fact that I quit my job at Yahoo! to go back to school and get a Master of Public Health degree in community health education…. I just couldn’t believe that this one number could negate all these efforts and take away my ability to drive.
Well, to make a painfully long story (a little bit) short(er), I got a letter from the DMV last night saying that “no further action is needed at this time” but that I should “report any change in my condition immediately to the DMV.” I felt a sense of relief, yet am still disheartened by the amount of importance placed on one number, the infamous A1C.
