Diabetes Gone Digital: A Personal Journey
By Kerri Sparling
by kerri morrone sparling
When I was a kid, I filled a tattered series of journals with my blathering thoughts. I wrote about teachers I didn’t like, middle school crushes, and what I wanted to be when I grew up. I kept this journal starting in second grade and continuing well into high school, leaving volumes of my life thoroughly – and dramatically – detailed. What’s amazing is going back and reading these scrawled pages, realizing that I have a well-documented outline of my childhood in Rhode Island. Not every detail is accounted for, but I can get the Big Picture. (Some of the details are hilarious, but that’s just a bonus.)
The same goes for online health journaling (only with slightly less hilarity). There is something so powerful about chronicling a health journey with diabetes – the good and the bad - in ways that reach far past the support of the community. After writing Six Until Me for over five years, I now have a comprehensive record of my health, just through the information relayed in the posts. With diabetes as the main focus of my blog, I can find my last A1c result or the date of my most recent endocrinologist visit just by searching the content. By searching specific categories on my blog, I can read the journey of my pregnancy, from start to finish, reliving every detail from the preparation, to finding out I was pregnant, to the quest and achievement of my personal best in controlling my diabetes, and to that beautiful moment when my daughter took her first breath.
And as we know that history tends to repeat itself, I’m running into the same issues over and over again. Just recently, I started back at the gym to earn the return of my pre-pregnancy body. Thanks to these nightly workouts, I’ve experienced some serious post-gym lows over the past two weeks.
“What the gosh darn,” I said to myself, substituting slightly more colorful words in for “gosh darn.” “Low again? How long is it going to take to get back into the swing?” I consulted my blog and browsed through the fitness-related posts.
Turns out that every time I embark on a new exercise program, I hit the blood sugar trenches big time for about nine weeks. I made the tweaks two days ago and my numbers have been pretty good since, post-workout. It’s not until I start cranking down my basal insulin to about 30% of the normal amount and add some protein in at least 45 minutes before the workout that my numbers start to behave. Did I remember these details offhand? No way. But I did have access to the nitty-gritty info in my blog posts. (And that saved me an extra seven weeks of torture. Bonus!)
There are, of course, literally hundreds of diabetes bloggers who are sharing their stories to inspire others and themselves. But these are more than just “stories” – these blogs are personal health records that can be poured through for a real look at life with diabetes. And blogs aren’t the only ways to journal a health history with diabetes. There are now so many technological advancements that help create that diabetes Big Picture, just like the journals I kept as a kid.
One example is the mighty USB drive. As my husband and I unpacked our new office last week, I came across a small box of USB drives that were crammed with blood sugar spreadsheets: months of gearing up for our wedding, preparing for my pregnancy, and then actually seeing the nine months of my daughter’s gestation documented in snapshots of blood sugar graphs and pie charts. I reviewed through these spreadsheets, seeing trends of control that have been in play for years (for example, seems like my morning basal levels need tweaking every six months or so, as my varying morning schedules affect my blood sugar control significantly). And these spreadsheets are in my email sent box, shuffled off at various intervals to my medical team, thus becoming part of my personal electronic health file. Best part is, these “offline” methods of management can easily become “online” with the touch of an upload button.
There are literally dozens of ways to maintain an informal health history online. Electronic medical records aren’t limited to lab results and physicals documented by doctors’ offices. Blood sugars can be tracked on websites like SugarStats or by downloading them to the software that comes with your blood glucose meter (e.g., the Animas EZ Manager system and Minimed’s Carelink). You can even share your A1c progress through TuDiabetes’ “TuAnalyze” program, where you have the option to disclose anonymously. Also, with the software that comes with continuous glucose monitors (CGM) like the DexCom Seven Plus (which I use), I have a folder on my computer that holds almost three years worth of CGM data. Viewing these data points from different electronic venues gives me that Big Picture of how my numbers have fared in the last few years.
Some patients choose to keep their health journaling public. I did, because I wanted to offer a very detailed look at a life, and then a pregnancy, with diabetes. I wrote about not just the blood sugar highs and lows, but the very subtle issues with diabetes and pregnancy, like the epic lows in the first trimester. I also wrote very involved posts about each doctor’s visit during the pregnancy, and then the experience of delivering my daughter by C-section. I wanted readers to really KNOW what the nine months were like – the good and the bad, right down to the baby’s arrival. Generalizations, when it comes to managing diabetes and pregnancy, aren’t as helpful as a first-hand account. And so many other writers are chronicling their experience with retinopathy, or neuropathy, and sharing the specifics about medications, side effects, and emotional implications. Some patients are sharing their experiences in diabetes-specific forums, or on social networking sites, or even through something as simple as a Facebook status update with their latest view on diabetes. (Status messages like “Diabetes really sucks today” show a state of mind, and the comments that follow often show a supportive care community that can help change that mood – it’s an amazing thing.)
From blogs to tracking health stats online to simply updating your social networking profiles to reflect triumphs and challenges, sharing and tracking one’s health online has benefits that reach further than the lab results. An online health journal aids in keeping us accountable, and accountability – to others and ourselves – promotes good health.
