One of the best resources for learning about diabetes and connecting with other PWDs (people with diabetes) locally can be summed up in five letters: TCOYD.
That would be Taking Control of Your Diabetes, the national educational conference series founded by endocrinologist and longtime type 1 Dr. Steven Edelman in San Diego. He's not only a super-knowledgeable clinician and researcher, but a really funny, passionate guy who infuses these day-long seminars with energy and inspiration. Seriously, everything I need to know about diabetes I learned at TCOYD.
For the past dozen years, I've had the privilege of speaking at my local Santa Clara event, that brings in about 1,000 patients for a full day of talks, panels, activities, a product expo and a banquet lunch -- all at the affordable price tag of just $20 per person!
This year, I was honored to be on a very cool opening panel for the Type 1 Track led by another awesome accomplished endo + type 1, Dr. Jeremy Pettus (who shared his smarts on alcohol and diabetes with us here).
Our panel was titled, "Golden Rules for Type 1s: Tips for Living Well with Diabetes," and included Dr. Bruce Buckingham of Stanford, Dr. Christine Ferrara of UCSF, Adam Brown of diaTribe, and Yours Truly from the 'Mine.
I think the audience really appreciated that we weren't trying to act as if we had all the answers, but rather just talking turkey about the realities of the hour-by-hour challenges of T1D. I thought you all might enjoy hearing the answers I prepared for this session, which aren't exactly "golden rules" but my own personal best practices, such as they are...
TCOYD) Do you have an overarching philosophy with your approach to managing your diabetes?
Amy) Do just enough to stay in decent control while STAYING SANE.
Has this philosophy changed over time?
It’s only grown stronger. Not having regular meltdowns over diabetes issues is an ongoing effort.
What would you say is the most important thing that has made a difference in your type 1 life and helped you keep on track? Inner strength/approach? A healthcare provider? Family members? Your job?
The support of my family for sure, and to a large extent exercise -- which makes me feel good physically and psychologically.
I also think it's super important to connect with other PWDs for sanity checks (TCOYD is excellent for that!)
What therapy or equipment has made the biggest difference in your life (CGM, pump, rapid insulin)?
I would say the OmniPod tubeless pump and Dexcom CGM. I love being able to pump with no dangling cannula, and the CGM has been a huge game-changer in just being constantly aware of what's happening in my body. I've also been using Afrezza inhaled insulin for the past year and have found the biggest advantage of that is having less complexity with IOB (insulin on board).
As you know, injected insulin sticks around in your system for four hours, whereas Afrezza is in and out in 1.5 hours. That means way less chance of insulin stacking, going low during exercise, nighttime lows, and more.
How important, or not, has a healthcare provider been in your success?
From my POV, the priority is that your HCP does NOT annoy / judge / misunderstand you / dismiss your concerns. You need to be comfortable and feel respected with that person! I have been fortunate to find such a doctor, although I must admit I don't see her all that often.
When everything goes to shit, what is usually the reason? Travel? Life stress? Change in diet? And what do you do to get back on track?
Travel and lack of sleep are huge for me; they usually go hand-in-hand. For that, I do my best to eat as low-carb as possible and check often, plus correct often.
Laziness / procrastination are also big factors. There are lots of times when my pump is beeping that it's time for a pod change or my CGM is alarming high, and I just don't want to deal with it immediately. I don't want to have to drop what I'm doing. But the results are almost always bad. I chalk this one up to being human.
Finally, my period does wonky things to my BG levels that are hard to predict. For the Ladies reading this: am I right? Hormonal cycles have a strong effect on blood sugar, an issue that's not discussed or explored enough.
How do you deal with exercise? Does it help your BGs or make them worse?
It’s constant trial and error. I have some set Temp Basals that I use regularly for spin class, aerobics, kick boxing, hiking and other workouts, but they’re far from fool-proof. To me, the most important thing is not to have to eat a bunch of empty calories I’m not hungry for -- in other words, to avoid going low at all costs, which often means I end up high after exercise and have to spend several hours at least chasing those highs. Come to think of it, I could use some improvement in this area.
What's your approach to food? Do you eat whatever the hell you want and just bolus for it, or do you avoid certain foods? Do you have any additional dietary restrictions?
I’m also gluten-intolerant, which is a pain in the rear, but it helps keep me very low-carb. I try to eat as low-carb as possible without making myself miserable -- meaning I try to do "just a taste" of the carby foods I desire most (which for me is mainly tortilla chips and granola bars).
Overall, I just eat a lot of protein and veggies, mostly salads. Thank God I actually like kale :)
How involved, or not, is your significant other in your diabetes? Do you want them more or less involved? If you could tell them one thing to change, what would that be?
My partner is very supportive, but not at all involved in the daily nitty-gritty. That's usually how I like it.
If I could change one thing, I guess I wish that instead of peering over my shoulder every once in a while to ask something like, "175, wow isn't that kind of high?," he would periodically ask a broader question, like, “Hey, how’s it going with your diabetes?” and then just listen to whatever I feel like sharing -- without necessarily trying to "fix it."
What do you LOVE to eat when you are low?
Raisins! I loved to eat lots of dried fruit before I got diagnosed, and had a hard time giving that up. Now I buy copious amounts of those little red snack boxes of raisins. Did you know the mini-boxes come in chocolate-covered and yogurt-covered varieties now too? Yum!
I stash them in my car, purse, nightstand, kitchen, suitcase, etc.
I stock up so much that one day when I had a bunch of six-packs piled in the backseat of my car, I picked up my daughter and her little friend asked, "Does your mom sell raisins?!"
Tell us a time that you have used type 1 to your advantage?
This is a hard one to admit, but I've definitely used it to get to the front of a buffet line. When I get really hungry, it feels like a low, even if my BG isn't dipping too badly. If you tell people you have type 1 diabetes and need to eat now, they're usually accommodating.
I've also had my doctor write me a letter to avoid jury duty. She actually encouraged me to get out of it if possible, because it really is tough if you get stuck there for weeks on end -- in terms of being able to eat right, exercise, etc. (Before you get judgy, know that many PWDs have gone this route.)
What does "being in control" mean to you? Is it an A1C? No hypos? Time in range?
I would say an A1C of 7.4 or less WITHOUT FREQUENT HYPOS.
My good friend Dr. Richard Jackson of Joslin Diabetes Center always encouraged me to think of "good control" this way -- not as pressure for ever-lower A1Cs, but maintaining a decent level without frequent lows, which shows that you are actually staying "in range" most of the time.
Tell us about your approach to complications. If you have them, how do you deal with them? If you don't, how often do they enter your mind?
I don’t have any yet, knock on wood! But I do think about them often – especially for eyes and feet, which are my “weak spots.” Gotta get those screenings regularly!
Give us a parting piece of advice to others on how to make life with type 1 better?
I’d return to my overarching philosophy: “Do just enough to stay in decent control while STAYING SANE.”
Sanity in this case means allowing yourself slip-ups, and taking time for family, friends and activities you enjoy (and occasional food splurges) WITHOUT FEELINGS OF GUILT.
So Dear Readers, got any "golden rules" of your own to share?