As we continue our 2019 DiabetesMine Patient Voices Contest winner interviews, today we're happy to welcome a type 2 advocate who's become a vocal member of our online community.
Meet Shelby Kinnaird, who runs Diabetic Foodie and has recently published two books with practical tips on important food aspects of life with diabetes. We've previously featured her Carb Counting book, and today are thrilled to drill down into her POV as one of 10 empowered patients attending our annual DiabetesMine Innovation Days (now aka DiabetesMine University) in early November in San Francisco.
Without further ado, here's Shelby...
Talking with Diabetes and PCOS Advocate Shelby Kinnaird
DM) Hi Shelby, can you please start by telling us about your diagnosis?
SK) I was diagnosed T2 in 1999 at age 37. I also had PCOS (polycystic ovary syndrome), so I knew I was insulin resistant and high-risk. There was no such thing as “prediabetes” back then, but if there had been, I’m sure I would have been diagnosed with it.
I was the first in my family to get a T2 diagnosis. Within a year or so, my dad’s two brothers were diagnosed with T2. A few years later, my brother was diagnosed (also at age 37, believe it or not). A few years after that, my parents were both told they had prediabetes. Now they both have T2 as well. In addition, my brother’s wife and her mother both have T2. My best friend was recently diagnosed with T2 and my husband and I have had several friends die from diabetes complications.
Wow, that's quite some family diabetes experience! Is there anything you've taken from that?
Clearly, there’s a genetic component. The good news is that we’re all in it together and we don’t judge each other. Honestly, we don’t talk about it that much -- it’s just an accepted part of our lives. We do compare medications, share A1Cs, and swap recipes sometimes.
Any crossovers with PCOS and the diabetes?
PCOS is related to insulin resistance. One of the symptoms is irregular menstrual cycles. My cycles were always unpredictable, but as soon as I started taking metformin, everything changed. My cycle was every 28 days like clockwork. That had never happened before in my life.
Another similarity between PCOS and diabetes for me is in the area of peer support and advocacy. Back in the mid-1980s when I was diagnosed with PCOS, most physicians had never heard of it and had no idea how to treat it. I found an online support community (via listserv in those days) and started learning from my peers. I attended several conferences where I learned to advocate for myself and not be intimidated by doctors. That was my first introduction to communities like the DOC (Diabetes Online Community). Being involved with PCOS back then has helped me be a better diabetes advocate today.
Did your health issues impact your professional career at all?
When I was diagnosed with T2D back in 1999, I had a very stressful job in software engineering that required a lot of travel. The majority of my meals each week were grabbed on the go or eaten in a restaurant and I didn’t make healthy choices. The only exercise I got at the time was when I had to race through an airport to catch a flight!
Once I was diagnosed, a diabetes educator taught me how to make better food choices and the importance of exercise and managing stress. I arranged things at work so I could stay home more. I started preparing healthier meals and took a walk every day after work. I also started packing a lunch every day. Eventually, my health became more important to me than the job. I ended up going back to school and completely changing careers. Diabetes was the catalyst for a happier life, believe it or not.
Where did that take you, professionally?
I’m now a software engineer turned web designer turned diabetes blogger/author and advocate. I founded and run the Diabetic Foodie website, and am on the American Diabetes Association’s Virginia Advocacy Committee as well as the Central Virginia Community Leadership Board. I also lead two DiabetesSisters PODS groups in Richmond, VA, and have published two diabetes-related books.
Tell us more about those two books you’ve written?
In 2018, I published The Pocket Carbohydrate Counter Guide for Diabetes. It’s not a big list of foods and carb counts, but rather basic information about how carbs work in your body and tips and tricks I’ve learned for managing diabetes and food over the last 20 years. Earlier this year, I published The Diabetes Cookbook for Electric Pressure Cookers, which includes 80 diabetes-friendly recipes for multi-cookers like the Instant Pot.
Awesome! And how did you get involved with that national organization for women with diabetes?
I met DiabetesSisters CEO Anna Norton at a diabetes advocacy event a few years ago. I had just moved to Richmond, VA, and she mentioned that there had been an active PODS meetup group there, but it had disbanded. She asked if I would be interested in reviving the group. I eventually got things going again and there was interest in a couple of different parts of town, so now we have two groups in the area.
I have met so many wonderful people through the organization. I like that each meeting has an educational piece and a support piece. I have learned so much from my D-sisters! For example, I now wear a FreeStyle Libre (flash glucose monitor) and it’s the best thing I’ve ever done for my diabetes management. I doubt I would know anything about CGM use for T2s without DiabetesSisters. In 2019, I was thrilled to be selected as the PODS liaison to the DiabetesSisters Board of Directors.
How did you find the Diabetes Online Community, and eventually create your Diabetic Foodie site?
Honestly, I don’t remember how I found the DOC. I think I stumbled onto a Twitter hashtag around World Diabetes Day one year. Back in 2010, I was a freelance web designer and needed to learn the WordPress technology for new project. People were always asking me for recipes, so I decided to create a WordPress blog site for myself with a few of my recipes before I tackled my client’s website. I wanted to show the world that a diabetes diagnosis doesn’t mean you can’t continue to enjoy delicious food. That’s how Diabetic Foodie started. At first, I was more plugged into the food world, but over time I became part of the diabetes community as well.
Which diabetes tools and tech do you personally use?
As mentioned, I’ve been using the Freestyle Libre for about 6 months or so. Before that, I used the OneTouch Verio Flex glucose meter.
Where have you seen the biggest changes in your time with diabetes?
The evolution of CGMs (continuous glucose monitors). I love data and the Libre finally gives me access to it. I also think physicians and diabetes educators do focus more on the individual now rather than trying to get everyone to adapt the same cookie-cutter treatment plan.
What gets you excited as to diabetes innovations?
More tools to help people independently manage their diabetes. One woman with type 1 diabetes who attends one of my DiabetesSisters PODS meetings says, while she would still like the cure she was promised when she was 9 years old, the technology she now uses makes her feel pretty “normal.”
What would you tell product manufacturers they could do better, if you had the chance?
I feel that most diabetes innovations are targeted towards Type 1, and rightly so -- but T2 folks could use cool tools too!
Given the current cost surges, have you personally struggled with any access or affordability issues?
Oh my, yes. I’m 57 years old, self-employed, with a pre-existing condition. In 2017, I had the best health insurance I’d had in decades -- premiums of $100/month and all of my medications for $80/quarter. Now my premiums are $733/month and my medications are $2,100/quarter -- unless I happen to be in another country and buy it there.
I learned of the pricing differences on a recent European trip when one of my Trulicity pens failed and I hadn’t brought a spare. Fortunately, I had a copy of my prescription and I paid about $338 for my quarterly supply. Just $338 instead of $2,100! Also, my insurance won’t cover the Libre because I don’t take insulin. I pay for my sensors out of pocket.
Last not least, please tell us why you decided to apply for the DiabetesMine Patient Voices Contest?
In the two DiabetesSisters PODS I run, members frequently have questions about diabetes technology -- usually from a T1 point of view. As someone with T2, I am woefully lacking in knowledge. I wouldn’t have even known about the Libre without my D-sisters! I need to learn, so I can be a better resource for myself and others. At DiabetesMine University, I want to learn and I want to meet other diabetes advocates and innovators.
Thanks for sharing your story with us again, Shelby!