This past weekend, August 17th-19th, 2018, I had the pleasure of visiting San Diego, California for TCOYD’s ONE conference held for adults with Type 1 Diabetes. Beginning Friday evening and ending Sunday morning, I met Type 1 Diabetics left and right and listened to professionals speak about best ways to take control of your diabetes.
I wanted to summarize my experience and highlight key points that sparked my interest during these amazing three days, so you could feel like you were there yourself!
“This is the place where you let your pumps hang out,” Jeremy Pettus, MD, assured us in his opening speech at the second annual Taking Control of Your Diabetes (TCOYD) ONE conference & retreat held over a period of three days in San Diego, California, for adults with Type 1 Diabetes. Prettus works with Dr. Steve Edelman, the founder of TCOYD to hold this conference as well as others around the country. Prettus and Edelman are both T1D’s who have defied the limits put on them by their doctors when first diagnosed. Limits such as blindness and kidney failure that they were told would inevitably come with the diagnosis. The two are now proof that those limits have dissolved when you learn how to control your diabetes, rather than letting it control you.
Prettus proceeded to tell us that if we need a pump battery or a glucose tablet, just ask the person next to you and there’s a high chance they’ll have one. Even Prettus himself admitted to having a low battery on his pump. As soon as he said this, I felt like the crowd was going to start throwing AAA batteries in his direction. The diabetic equivalent to throwing roses at an opera singer. We were also welcomed by Edelman and Tricia Santos, MD, as they summarized their excitement for the weekend ahead while introducing us to those that helped put this conference together.
I sometimes feel inadequate as a diabetic when I can’t get my Blood Glucose (BG) in range or when I mistakenly leave the house on low battery without any backup. But in a room full of hundreds of Type 1 Diabetics, I felt like I had a safety net. Luckily, I didn’t need insulin or a battery while I was there but I wouldn’t have been embarrassed to walk up to any people in this audience and ask for one or the other. I wasn’t worried about them thinking that I’m an immature diabetic or that I’m not taking good care of myself because I knew that all these people have gone through the exact same thing at one point or another. How could we not when there are so many things to remember when just trying to keep our BG in control? It’s a miracle we remember to put pants on before leaving the house when we have to go through this lengthy diabetic checklist first. Meter, check. Glucose, check. Battery, check. Did I put my pump back on after my shower? Whoops.
The second day started at breakfast, where I sat at a round table with these beautiful girls who have been living with diabetes for a wide range of years. Asking questions, telling stories, you could not shut us up. The only thing that could, was when a speaker series started and William Polonksy, PhD, CDE, a behavioral psychologist from the University of California San Diego (UCSD), reassured us that there is no such thing as a perfect diabetic. The breakfast club and I had already established this prior when we talked about our highs and lows we experienced the previous night, but it was great to get reassurance from a professional.
Polonksy pointed out that not even athletes are “perfect diabetics.” An important point to make when you hear about olympians and professional athletes competing whilst managing diabetes and yet, every time you take your dog for a walk your BG plummets. These athletes deal with the same thing, which is why they check their BG levels almost 20 times a day- because they aren’t perfect diabetics. The talk of athleticism with Type 1 Diabetes segued into how exercise benefits Type 1 management. I would usually roll my eyes at this comment outside of a conference specifically for Type 1 Diabetes, because this kind of comment usually implies that if I exercise and lose weight, my diabetes will “go away.” This is where Type 1 and Type 2 get twisted. But Polonksy only introduced this because of how even just 30 minutes of running/walking in the morning can keep a more steady BG throughout the rest of the day. This is something I completely agree with.
Another part of the speaker series was a Registered Dietitian (R.D), Adriana Valencia, RD, CDE, whose talk was titled “Throw Out Your Measuring Cups! How to Really Count Carbs.” After 16 years with T1D, you’d think this carb counting thing would be a breeze for me but Valencia dug below the surface of carbohydrates to teach us about the sugar alcohols that we might not be factoring into our carbohydrate counting. If a food has a substantial amount of carbs (>5g) and contains sugar alcohols (glycerin, mannitol, sorbitol, xylitol, erythritol and isomalt are some of the common sugar alcohols), divide the grams of sugar alcohols by 2 and subtract that number from the total carbohydrates (CHO). In Valencia’s example, two cookies are 17g of CHO with 8g of sugar alcohols. 8/2 = 4, 17-4= 13. So you would bolus for 13g of CHO. This is because sugar alcohols are incompletely absorbed by the gut, so giving a bolus for them could result in a hypo.
The last part of the speakers series that I participated in was Kerri’s Corner: A Safe Place to Talk about the Good, the Bad and the Ugly side of Type 1. Basically, 45 minutes of venting about diabetes. Kerri Sparling (author of Balancing Diabetes: Conversations About Finding Happiness and Living Well) led the discussion with her adorable humor that kept us laughing amongst the highs and lows of diabetes. The discussion began with the good where Sparling asked us about why we might be grateful for our diabetes. I’d say those newly diagnosed were a little confused by this. But after living with T1D for so long, you begin to develop a small (very small but present) appreciation for what this disease has brought into your life. Maybe it’s a coping mechanism but either way, I wasn’t alone because I learned there were many diabetics in the audience willing to share the pinches of goodness diabetes may have brought into their life. For example, the friends you make through this strong connection and cutting lines at amusement parks. Matt Vande Vegte, founder of FTF warrior, shared his gratitude for diabetes leading him down a path towards nutrition and health, helping others lead happy lives with their autoimmune diseases.
There was also an emotional aspect to this session when the bad and the ugly of T1D were shared. Miscarriages, trouble finding work, and loss of motivation were all subjects that brought many to tears. But for every bad and ugly there was support radiating through the room and someone to stand up and tell us how amazing and capable we are despite T1D. One lady, whose name I didn’t get, has been living with T1D for over 60 years. Her advice was to stay curious because “the knowledge you get and the more curious you get, you become well armed in terms of managing, it becomes second nature- there’s a learning curve.” The learning curve is key to diabetes management, and even after 60+ years of T1D, there will always be things to learn.
I have to note that Saturday night was also one for the books as we probably broke a record for how many Type 1 Diabetics could fit on a dance floor. Who knew we were such good dancers? The best part was the 5 minute check to make sure the dancing was causing our BG to drop so we could keep dancing to Whitney Houston and the mambo no. 5.
On the final day of the TCOYD ONE conference, actor, Austin Basis from the CW’s Beauty and the Beast, spoke about his experience with what he calls the “dia-beast.” The dia-beast is something easily transmittable to the people around us, because when the dia-beast is awake, our crankiness from hypers and emotions from hypos can affect our relationships. Basis related to us when he spoke about his family trying to get him to check his blood when he wasn’t in a good mood, something diabetics diagnosed before or during adolescence have definitely dealt with. Basis is also creating a comic book, Connetics, where the superheroes are kids with disabilities and the main character has Type 1 Diabetes.
Sparling also came out to conclude the conference sharing more of her hilarious anecdotes about her time as a diabetic as well as being a mom with T1D. She shared stories about diabetes camp and the Ketone Tree where kids would be seen drinking a gallon of water, washing out their ketones as well as the thrill of eating insane amounts of sugar cereals at diabetes camp, one of my personal favorite parts of my own experience at diabetes camp.
I don’t feel alone in my daily life when I’m at work or studying with non-diabetics (or the losers, as Edelman named them), but after I spent three days surrounded by people who understood the most vulnerable, complex, and intimate part of my life, I did feel kind of alone. But I’m not. I was reminded that there are people all over the world checking their blood under the table and excusing themselves to the bathroom to give an injection. I hope that this weekend, where those actions could be done right then and there, teach us that we don’t have to be insecure about the ‘betes in the real world. Until there’s a cure, we’re stuck with it so I think those pump sites should hang out beyond the TCOYD conference, and let them be an opportunity to educate those who question it.
Thank you to Dr. Steve Edelman for founding and directing TCOYD and for bringing together hundreds of Type 1 Diabetics from all over the country. Because of this, I won’t feel alone again in living with this disease.