On November 12th, Carb DM celebrated its 7th year of service to the Bay Area diabetes community. A strong, supportive T1D community is just as important today as it was seven years ago. Research continues to show that social support is one of the influential and important factors for successfully managing diabetes. At Carb DM’s 7th Anniversary celebration, Executive Director Krystle Samai spoke of the role that community has played in her life and how Carb DM has helped one of its newest members.
I first heard of the idea that would eventually become Carb DM shortly after Tia was diagnosed with diabetes. I was overseeing year-round programs for DYF and happened to be at a weekend camp in Livermore that the Sofer-Geri family was attending. I recall sitting around drinking hot cocoa and eating carb-counted-cookies with Tamar and other young adults with T1D, when Tamar asked us something to the effect of, “How do you guys do it? How are we supposed to live every single day with type 1 out in the real world?”
I bet that each of us sitting in this room has either been asked, or have asked ourselves, this very same question. How do we do it? How do we wake up every morning (and midnight!), day in and day out, and attempt to manage this incredibly complex disease?
Well, the most simple answer is, we have to!
But a more vulnerable response? Is because I know that there are others out there doing it too, just like me.
About a month after I started at Carb DM, I recall a summer morning when I woke up debating the merits of disconnecting from my pump and taking a full weekend break. I had plans to go to the beach and, well, I just kind of wanted to get rid of all the tubes, beeps, sensors, and alarms for a few short days.
But my thoughts of Lantus vs Levemir, syringes vs pens, to leave my Dexcom on, or to go completely wild and disconnect it all…was interrupted by a phone call. The woman on the other end of the line was crying. She asked “Is this Carb DM? Do you know about diabetes? TYPE ONE diabetes?”
This woman went on to tell me that she had been misdiagnosed with type 2 nearly 15 years ago and has spent the past 10 years fighting for insulin — often times getting to the point of rationing her Levemir because her insurance company didn’t believe she actually needed it. And most recently, she’d had a very serious low that terrified her 2 children while she was home with them alone and her husband was at work.
I spent nearly 2 hours on the phone with her that morning. I shared that I too have had scary lows — ones where everything gets kind of blurry and I can’t see straight; or that sometimes my hands get so weak and my fingers so tingly that I can’t open my test strip bottle to check, so I just drink juice without knowing my number… or that sometimes juice just really tastes awful and I don’t want to have to drink anymore!
I also told her that there are some days where I feel like I’ve “conquered the dia-beast” and then of course, there are others where it feels like no matter what I do, how much insulin I take or carbs I count, my numbers don’t seem to behave… She started to laugh at that and joked that if anything else in her life were as difficult and unruly as juggling diabetes and insulin, she’d have called it quits by now!
We both laughed then, a kind of dark conspiratory laugh, because she and I both knew that diabetes doesn’t quit. But at least there was someone else out there who “gets it”.
Believe it or not, she was at Coffee and Carbs the next week, and came away with multiple people offering her backup bottles of Levemir and ideas for how to negotiate with her insurance company for more or find better prices. A month later she came out to Type 1 Topics, pen and paper in hand asking questions about pumps, carbs ratios, and basal rates…all in preparation for fighting for an insulin pump!
Just last month she sent an email telling me all about her adventures with starting on the Tandem with Basal IQ. Guys, she got a pump and a CGM!!
I want to read you a quote from her message that has really resonated with me: “Having you and Carb DM has been an amazing support system. One I didn’t even know I needed. I am finally more than a number and have value beyond rationing my insulin. I’m gaining confidence to advocate for myself everyday. Because of this community I feel brave, and know that I will never have to deal with this relentless disease alone again. I am so grateful.”
24 years ago, when I was diagnosed with T1D at age 9, my family and I too didn’t know anyone who understood what our life with diabetes looked like. Well, maybe except for my neighbor’s cat. But I don’t think he counts…
My parents were so overwhelmed. My grandparents were terrified they’d hurt me. And my friends didn’t know what to say. I’d never felt more alone. And as all of us in this room know, diabetes can be a really isolating disease.
But that’s where our community comes in! Carb DM believes that no one with type 1 diabetes should have to manage it alone, no matter where they are in their journey. And because of everyone in this room and in this community, we don’t have to.
We’re each here today because we believe that Carb DM serves an important need: that community, connections, and support offers both tangible and intangible benefits to the quality of life and health of every single person living with type 1 diabetes. Our community knows that we are stronger together. That there is knowledge, opportunity, and power in our shared experiences.
It’s been a big year for Carb DM! A year of transition and of new beginnings.
I believe that Carb DM is truly the heart and a hub of the type 1 community in the Bay Area — a nexus for people to come together, to learn about the latest and greatest, and ultimately discover how to thrive.
I am so proud of the work that this organization does, and I cannot wait to see where we go. Would you believe that Carb DM is on track to offer more than 150 individual programs in 2019?!
There are so many exciting programs on the horizon. Type 1 Topics with T1D ultra marathoner, Sean McPherson this December, and in January a “Tech Talk” with diaTribe’s editor Adam Brown and Close Concerns Head of Digital Health + Health Systems, Brian Levine. In addition, we have our ever-impactful Mother Daughter Weekend (we’re aiming for 2 nights!), and the incredible community consortium that is the Bay Area Diabetes Symposium on April 14th.
It truly is an honor to be in a room filled with Carb DM’s biggest supporters and some of the brightest minds in diabetes today. There aren’t too many opportunities where you can drink wine on a Monday evening with leaders from Tidepool, Stanford, UCSF, Bigfoot, Glooko, Diablo Clinical Research, Loop… and, THE Dr. Irl Hirsch.
So in this role as your new Executive Director, I’m most excited for the opportunities to work with amazing people, like you all, and come together to find meaningful ways to contribute…and to expand our programs, increase our reach, and impact the lives of the growing number of families and individuals in the Bay Area affected by T1D.
I want to say that I feel fortunate to have gotten to know so many amazing people because of an unlucky diagnosis 24 years ago… and to be a part of this incredible community.
So thank you all again for being here, and for all that you do for those of us with T1D not just today, but every day.