Type1Now Conference Debrief

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. 😉

Christina, Kerri, and Me at the JDRF Type1Now conference (2012)

About Shannon

I am a wife, a mommy, and a Type 1 diabetic (since '92.) I have had two successful pregnancies - one of which was with twins. I wear an insulin pump- - off and on for 21 years; most recently on the Medtronic pump and Dexcom CGM. I am not a medical professional, nor am I giving medical advice. I am just sharing my day to day stories of someone who lives with this disease every day. My ultimate goal is to raise awareness.
This entry was posted in Uncategorized and tagged , , , , , , , , , , , , . Bookmark the permalink.

7 Responses to Type1Now Conference Debrief

  1. Scott E says:

    Wow, Shannon, there’s a lot of information here! I wonder if you might be able to elaborate on a few of those bullet points. I’ve been reading “Pumping Insulin” and they also mention using a single target number rather than a range, and I’ve contemplated doing that. How “huge” a difference was it? (My range is only a spread of 10 mg/dl to begin with). Interesting about the combo/dual-wave bolus. I’ve always done something like 80/20… the bulk of it now, and a small bit over the next few hours. Often brings me really close to a low, then I hover in the 130s for awhile before going high. (And by “often”, I mean “yesterday’s pizza dinner”).

    • Shannon says:

      My range was initially defaulted to 80-120. So I changed it to just 120 (on the Medtronic you have to actually change it to 120-120.) It made a difference on my correction boluses. I tested the first one before I changed it and it would have given me a 2.8 correction. Before I bolused, I changed it to the 120, and it gave me a 4.8 correction. Brought me down to 120.

      The combo bolus – I changed mine to 40/60 for that Mexican dinner. Dr. Scheiner suggested taking the smaller amount “now” and then spreading the larger amount over the next 2 hours or so. So it sounds like maybe you were doing that part opposite? Maybe that would help the low if you didn’t take the bulk of it up front – your food hasn’t digested yet. IMO.

      Hope that helps explain it a bit? Let me know if you have any other questions – that WAS a lot of information.

  2. Kerri. says:

    I can’t believe we were photobombed by a walrus. 😉

    It was great meeting you!!!

  3. Karen says:

    Yay – it sounds like the conference was completely awesome!!!! Dr. Polonsky is one of my heros, and I always learn so much from Gary Scheiner. Thanks for the tip about leaving your old site in to help space out your new site – I never heard that one before. Love the picture of you and Kerri (and the walrus – because why wouldn’t Kerri be holding a random walrus??) 😛

  4. Christina says:

    Had made a mental note to read this post but I should know better than that – my brain doesn’t work as well as it should – thus my kitchen was often covered in post-its until whity moved in (not the derogative term used to describe a white person – it is my dry erase board) Anyway I got here now and you did a wonderful job of hitting the high notes (when you see the word high do you think bg cus I do – sad truth). Glad you mentioned the target bg vs the range bg I have meant to change those in my kids pumps. It was such a pleasure to meet you and I look forward to more D meet-ups – lets do the beach. Goo Goo g’joob friend. (I am a walrus – in my head again since you posted the pic)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s