We’re excited to present yet another of our 2013 DiabetesMine Patient Voices Scholarship Contest winners who will be attending our Innovation Summit in November — Melissa Lee, a 33-year-old from north of Dallas, Texas, who’s a very active advocate in the Diabetes Online Community and mother of two young children.
Melissa was diagnosed with type 1 almost a quarter century ago. While we know her as a fellow diabetes blogger over at Sweetly Voiced, Melissa works professionally as a private voice lessons instructor. That means she gets to teach singing fundamentals while wearing multiple hats that might include entertainer, counselor, personal trainer, and friend to her teenage clients!
Of course, she’s also passionate about improving diabetes technology, so here’s what Melissa has to say about the innovation world and about what motivates her to raise her voice:
DM) First, tell us about your beginnings with diabetes…
ML) I was diagnosed at age 10. My diagnosis story is a familiar one: thirst, lethargy, bed-wetting. DKA, hospital, coma. I’m told that my blood sugar was over 1,000 mg/dL. I did all my own shots and blood sugar checks. We complied with the standard treatment protocol at the time, but there was a lot we didn’t understand. My A1c was in the 10-16% range for my first decade with diabetes. In college, I started pumping and came down into the 9s and 10s for the first time, but it wasn’t until I was in my late 20s, married and planning for pregnancy that I saw numbers in the recommended range. And for that, I credit the social support and information I found online.
How did you first find what’s now a huge Diabetes Online Community, and what impact has it had on your life?
In 2008, I was newly married and had baby fever. My friends were all enjoying uncomplicated non-diabetic pregnancies while my A1c floated in the 7s and 8s and I couldn’t join them. I didn’t know what more I could do to manage my diabetes better and I had no idea that people were talking about diabetes online. My warranty expired on the insulin pump I was using and my husband and I were searching online for information about new pumps on the market. He stumbled on Amy’s Open Letter to Steve Jobs, where she asked why we were destined to be saddled with diabetes technology that was so user-unfriendly. It really spoke to me.
From her blog, I saw a link to the TuDiabetes community and joined. I discovered the Oh, Baby group and, for the first time in 18 years with type 1 diabetes, learned that I was not alone. There were other people just like me. They had the same struggles. They were young, bright women who wanted to start families. They were struggling. They felt like no one understood.
I didn’t know how much I needed support until I felt it wrapped around me. I had no idea what it could do for me. With the support and information I learned from others, I dropped my A1c in 6 months and, within a year of joining the online community, was pregnant with my first of two children. I’ve since committed myself to spreading the message that TuDiabetes and the Diabetes Hands Foundation espouses — “No one should feel alone.” I participate actively in the broader online community, I serve on Diabetes Hands Foundation’s Board of Directors, and I am currently serving on the Steering Committee of their Diabetes Advocates program.
So, you’ve had a couple successful pregnancies — how have today’s D-tools played a part in that?
Today’s diabetes technology was a help and a relief in preparing for and throughout both pregnancies. I used multiple combinations of insulin pumps and continuous monitoring devices during my pregnancies to keep my blood sugars in a desirable range and, more importantly, to respond to hyperglycemic events more quickly and aggressively. I used those technologies prior to preparing for pregnancy, but I didn’t yet understand how to maximize their potential. I also learned that there were negatives I hadn’t anticipated with pumping during pregnancy, but the online community help prepare me for what was ahead — considerations like using up your entire insulin cartridge in 24 hours, tightening skin kinking my infusion cannulas, the slow delivery of large boluses, and pumps’ max bolus settings being lower than you might need in a single meal bolus. Toward the end of both pregnancies, I actually took my meal boluses via injection and allowed the pump to concentrate on my basal needs. Pregnancy can be managed successfully without the tech gear, but it suited my personality and my expectations to have so much data and control at my fingertips.
What inspired you to enter our Patient Voices Contest?
True innovation starts with asking why… Why can’t we make it easier for people with diabetes to isolate the cause of a high blood sugar? Why do I have to throw out a bottle of possibly perfectly good insulin because I don’t know if spoiled insulin is the culprit? Why do I have to change out my pump cartridge or pod because I can’t tell if the insulin in it has gone bad? Why does a $1 test strip come with control solution, but a $100 vial of insulin does not?
Describe the basic message you intended to convey in your entry?
I believe that insulin manufacturers should provide us with means to check the efficacy of our insulin. I want to be able to know whether the insulin in my pump or purse or refrigerator is spoiled.
Quick: what’s your 140-character Twitter sentiment on diabetes tools & technology?
Sleek diabetes technology, sophisticated management tools, faster insulins… None of it matters if we can’t trust it to work consistently.
What would you most like to experience and bring to the DiabetesMine Innovation Summit?
I am a longtime member of the DOC and have never been asked to attend a summit. I’ve never had the opportunity to share my patient perspective with anyone on the pharmaceutical side of the conversation. I have tried many meters, many pumps, many insulins. I know what I don’t like about each of them and have a great deal of feedback to offer to make products work better for patients.
How can this kind of advocacy potentially affect your life and the lives of other PWDs?
When I stare at a vial of insulin, I’m sometimes overwhelmed with how much of my world depends on that little bottle. Everything I’ve known from age 10 to now — my husband I love, my children I’m raising — none of it would be here were it not for that small, fragile bottle of sensitive liquid. I depend on insulin to work when I’m sleeping, when I’m teaching, or when I’m pushing a stroller in the Texas summer heat. I need manufacturers to provide me with the means to check to see if that insulin is safe to use – other than waiting for adverse reactions and unexplainable high blood sugars. I don’t like wondering. I’d like to know.
What else hasn’t been said, but you want to say?
I’m an enthusiastic early adopter of new technologies. In our house, I think it is safe to say that we have tried most phones, most tech toys, and most insulin pumps. I am beyond grateful for the opportunity I have to try new technologies, but at the end of the day, it’s still me managing the numbers and diet and activity of diabetes. And it’s still hard.
Diabetes technology adds new dimensions and variables to an already difficult game. I have had my share of D-failures managing my diabetes as a performer, a teacher, and a mom, but you just have to get back out on stage, back to the chalkboard, back to the cuddles. I want my children to see me trying my best to take care of my health and not being afraid to try new methods of doing so. Their world will be more technologically advanced than ours anyway… I have to keep up.
We have to keep up, too, Melissa! That’s why it’s so crucial that we have great advocates like you raising your voice and helping shape the direction of future D-tools. We can’t wait to see you at the Summit!