We first learned about this husband and wife duo, Mike and Samantha Oettinger from their Facebook group, Bergen County Diabetics. They both have T1D and started the Facebook group after an encounter with a little boy who asked about life with the disease. Mike and Samantha are #T1DChangemakers who have set out to create an environment for the T1D community to connect online. Mike and Samantha have been together for 12 years (coming up on 13 in a few months!), live in Bergen county and have three beautiful kids. Learn about their story and how they are movers, shakers and T1DChangemakers!

JDRF: Can you both tell us a little about yourselves, how you met, and your journey with T1D.

Mike: I was diagnosed with type 1 diabetes at age 11. My mom took me to my doctor after feeling exhausted thirsty, and having lost some weight. I still remember the look of surprise on the doctor’s face when my blood sugar read “HIGH”, instead of an actual number. I had no idea at that age what diabetes was, and remember feeling totally overwhelmed. I was going to need to use a needle to inject myself with medicine for the rest of my life? At 11 years old, it was a lot to take in. I was educated on my newly acquired medical condition, learning how to test my blood sugar, administer insulin, and apply carb counting to my everyday routine. I also remember being told not to worry because soon there would be a cure, something we are all still waiting for. As I became a teenager, I was embarrassed to let people know I was diabetic, because the last thing a teenager wants to be is different from their friends. I mostly kept it to myself, yet being secretive with syringes on me and in my locker lead to rumors. It hurt me more than I realized at the time. As I got older, and diabetes was still something I chose not to share with everyone, my friend started dating a girl with a sister who was also type 1. I initially thought nothing of it, but when we eventually ended up meeting, I realized how nice it was to have someone understand exactly what I was going through. It was also a bonus that she was absolutely beautiful. My friend and current sister-in-law didn’t last, but Sam and I are in it for the long haul!

Samantha: I’ve been a type 1 diabetic since the age of ten. I had a similar diagnosis story to Mike’s, and was also told there would be a cure in my lifetime. I remember trying to fall asleep the first night I spent in the hospital, and wondering if diabetes would stop me from doing certain things in my life. I wondered if anyone would want to marry me if I was now a “sick” person. Figuring out how to keep myself in good range took a few years, the right attitude, and the advancement of medical technology. Getting on a pump and CGM has been life changing in terms of achieving a tight A1C. Although, I wasn’t open to trying a pump until I met and started dating another diabetic named Mike. Beyond having diabetes in common, we are very similar people who make a great team. Early on in our relationship we used to tell people that we met on a diabetic dating site because the whole thing was just so ironic. We will be celebrating 13 years together in a few months, and I can’t imagine what life would be without him or our kids.

JDRF: Thanks for sharing your story! Tell us a bit about your Bergen County Diabetics Facebook group and what motivated you to start it?

Mike: I It took me a really long time to be comfortable in my own skin. I think being around my wife helped me a lot, as she has been my anchor and continues to encourage me. A few years ago she and I got the opportunity to meet with a young boy who had just been diagnosed, along with his mother. As we spoke with them, I recognized the same look of fear I believed my mother and I had had when I was first diagnosed. I showed him my insulin pump, answered some of their questions, and shed a tear with them. I had never been asked to speak to anyone about diabetes before, but something changed in me after that day. I think what most people miss about this disease is that effects more than just the person diagnosed. Diabetes is a disease that takes no days off, and it’s even more difficult to take on such a responsibility as such a young age. I am lucky and thankful to have a very strong support system when I comes to my health, but not everyone does. After speaking with this boy, I felt inspired to become an open book about my disease. My wife and I would talk to anyone who had questions about our pumps. We would talk to others with CGM’s or pumps who felt comfortable talking about it. We would share in the excitement of seeing a type 1 “out in the wild”. The more people I met that I could relate to, the bigger our small pond felt. I would clip my insulin pump to the outside of my jeans in hopes someone would see it and ask a question, or maybe I would run into another diabetic. This was the start of the group, a simple gesture to start a conversation that I avoided for so long. A community where everyone has a similar struggle, where we can all compare, relate, share and care for each other. I didn’t have the benefit of the internet when I was diagnosed, which makes all of this so much easier and accessible to so many more people.

Samantha: When Mike mentioned that he wanted to start the group, I couldn’t have been more on board. I loved the idea of creating a community within our community for diabetics to support each other and I had previously started an Instagram account @sometypeofwonderful for that exact reason – to connect and contribute to the T1D community.

Since the Facebook group’s inception, we’ve tried to spread the word, however that comes with challenges. Not everyone is as open as we are about our diabetes, and that’s ok. In this group, you can belong as a contributor or an observer, whichever serves you best. Nothing like this existed back when I was diagnosed, and I so wish it had. We aim to reach as many people as possible, and hopefully set up events in the future.

JDRF: What would you tell someone who has just been diagnosed with T1D?

Mike: If I could give someone advice who has just been diagnosed with with diabetes, it would be to find a routine. What has worked best for me is finding a regimen that I can follow daily. It took a while to fine tune it, but eating habitually and learning what certain foods do to your blood sugar will help you manage diabetes a little easier. Try and eat your meals at the same time and stay with a low carb, high protein diet. Incorporate a daily exercise routine that works for you. Prioritize your health, and don’t let others influence you negatively. Most of all, take care of yourself so that you can take care of others. Especially if you plan on having three kids.

Samantha: I would tell a newly diagnosed diabetic to surround themselves with people who support you. Family that takes interest in learning about diabetes, actual diabetics that get it, and *especially* an endocrinologist that roots for you. We see an amazing endocrinologist that has been on our team since day 1. I would also say that diabetes is not the end of the world. So far in my life, I have done everything I have wanted to do (that I was sometimes told I shouldn’t/couldn’t do!) The little girl who was afraid she was unlovable after being diagnosed, is now married to the man of her dreams. After three high risk pregnancies and maintaining an A1C that averaged 5.0, we have three happy, healthy kids together. I’ve gotten piercings and tattoos that I was told would not heal properly, that did. I was told I’d have complications by now, but I don’t. I’ve even gone sky diving with my pump in tow. Everything is STILL possible, even when you have T1D.