This past weekend my friend, Suzanne, and I drove to Austin to attend the Austin JDRF chapter’s Type1Now conference. It was so worth the trip! I learned so much. And yet again, realized just how much I don’t know (but should have!) about my own diabetes that I have lived with for almost 20 years now.
I learned about JDRF’s research from. Dr. Aaron Kowalski:
- Closed loop systems. And that they are working on products, already approved and available in other countries, that will suspend the pump if you have night time lows.
- I learned about Macro and Micro encapsulation – which is regarding islet and beta cell transfers.
- I learned there is an organization called npod that asks for Type 1’s to donate their pancreas for research needs
I went to a session about diabetes burnout (hello!) and I realized that I have not been living in denial for the past 19 years, as much as I’ve been living in a bubble. I’ve been just trucking along, living status quo. And frankly I’m very lucky (and thankful) that I have not had any more problems/complications than I have had. The way the presenter (Dr. William Polonsky) put it was you know you have diabetes, but you don’t want to talk about it, because you know you’ll get lectured for not doing it the “right” way. And if your family “gets it” as much as you do/should, they’ll also probably lecture you. (But at the same time, he stressed how imperative it is that your family does get it.) You feel defeated. You know you are likely going to die from complications from this disease, so you are scared, whether you’ll admit it or not. He said that diabetes makes you feel exhausted (so true!!), boxed in, weird/different, and isolated. He said that you have to be ok with knowing that you can do everything “perfectly”, but some times there seems to be a diabetes fairy that taps you on the shoulder and for no good reason causes wacky BG’s. He said he actually has little stickers that he gives to his patients to put on their meters (he is a T1 Diabetes counselor as well as a CDE) that says “Remember it’s just a number.”
One of the biggest things he said was that whether you are living with T1 yourself, or if you’re a parent of a T1 child, you feel anxiety, guilt, more guilt, and anger. Since I’m the one living with it, I don’t necessarily feel the guilt. But I do occasionally have anger and more often than not lately, I have anxiety, which I will talk about separately in a future post.
I also went to a session led by Sandi Spicer-Moore (Nutritionist). It was very useful and she talked about the importance of not only eating well, but which foods are even better for T1’s for different reasons. Make a colorful plate. 🙂 One of the things I did learn in her session was about fiber. She said if the label shows that a serving has >5g of fiber, divide that number in half and subtract it from the total carbs per serving. Hmm. Had no idea fiber factored in that much.
Besides the Burnout session, the other impactful one for me personally was Dr. Gary Scheiner’s session on Advanced Pumping. There are so many different features on my Medtronic pump that I have never used because I just didn’t understand all the functionalities. I learned some of the following things –
- The two hour post meal BG check is worthless. And almost all of us do it. He said that a one hour check will show your spike. And if you check 3-4 hours post meal, that number will tell you if you took enough of a bolus to cover your meal. Hmm. Never knew that.
- Also, pumps allow you to set a target range. For example, if you want to keep your BG within an 80-120 range, that’s what you can set and whenever you take a correction bolus, it calculates based on how much insulin it’ll take to get you back into that range. He said don’t do that! Set a number, not a range. If it’s a range, it’s like shooting an arrow at a moving target but if you give it an exact number, it gives it a bullseye to aim for. I made this adjustment on Saturday and it made a huge difference.
- He also said you may need a different sensitivity factor at night than you do during the day. This can help prevent some night time lows. Didn’t know that, either.
- He said if you take the average units/day and divide it by 1700, use that number to calculate your daytime correction factor.
- And Medtronic pumps are the only ones that deduct Active Insulin (IOB for you Animas folks) from correction boluses, never from food boluses.
- He gave suggestions on site changes – for those of us old schooler’s, we are running out of places that are not full of scar tissue. He said if you are using your abdomen all the time, his suggestion was keep the old site in, then put the new on next to it and that will leave the right amount of spacing. But don’t forget to take the old one out 😉
- He talked about combo boluses, which is something I have not used very often, other than for pizza. And I’d always just used the 50/50 setting that was defaulted on my pump. (And I’m still almost always high a few hours later.) He suggested starting with a 30/70 or a 40/60 setting. So I played around with this at dinner that night – cheese enchilada dinner at El Chico. First I would have not thought to use a combo bolus. Which means that my normal bolus would kick in after about an hour, but the food itself (since it’s fatty) won’t kick in for a couple of hours, and I’d have no extra insulin to cover it, therefore leading me to a high. So I did a 40/60 combo bolus and was in the 140’s 3 hours later. Not too shabby. (Thanks, Suzanne, for helping me work those numbers at dinner!)
I also was able to meet a couple of new friends in person, with whom I’ve met online from the DOC (Diabetes Online Community) – Christina and Kerri. Christina is a mom to 3 beautiful kiddos, two of which are T1. Kerri is the person that, unbeknownst to her (until we spoke this weekend), inspired me to start writing a blog in the first place. And listening to her keynote address, I realized she started hers for a similar reason – just to talk about living with T1. Her husband suggested it to her, and when she first started it she thought “Ok I’m out of things to say.” But then quickly realized it sort of took on a life of its own and the words just started to flow. That is what is happening to me. I started my blog on March 1st, and I have received almost 1200 hits from so far 12 different countries. I receive emails/comments weekly from people I don’t know that tell me “Thank you for writing this” or telling me something specific they could relate to. That right there makes this whole thing worth it. I’m very much looking forward to going to more conferences in the future, and learning as much as I can, and advocating for research and awareness.
Below is a picture of me with Christina and Kerri. And a walrus. 😉