Diary of an Artificial Pancreas – April 2017

Welcome to our JDRF Bay Area blog series, Diary of an Artificial Pancreas, written by Jamie Kurtzig who turns 13 in May. Each month, she will share her day-to-day experiences living with the Medtronic MiniMed 670G closed-loop system, or Artificial Pancreas. Jamie, diagnosed with type 1 diabetes (T1D) at 19-months old, participated in a clinical trial for this system with Stanford University in the summer of 2016. She was able to keep the system and has been living with it ever since.

April 1: Today, I took the practice SSAT test to get ready for taking the real SSAT for applying to high school this fall. This test took forever – about 4 hours of testing in writing, quantitative 1, reading, verbal and quantitative part 2. There were only 2 breaks during these hours of testing – one break was 5 minutes and the other was 10. It was really nice to get to practice and see what the SSAT test was like, but it was also nice to see how it would work with my T1D. In this test, I did not get any extra time (because we didn’t ask for it), but in the real one, I get a thing called “Accommodations”. This is where I not only get to bring in my test kit, food for when I go low, and water for when I need a drink or go high, but I also get a little bit of extra time. I get extra time because I have a condition that could potentially take away from my time while I would need to be making adjustments for my blood sugar. This is just to make things fair to everyone. In this test, I had to make some changes during the first section to help keep myself feeling well. My pump was beeping a little bit and in the middle of a silent test, it was kind of awkward, but everyone understood (it was all my classmates so they are all used to it). I did not get to finish the first section (math) partly because of the time it took to make my adjustments, but also because I am just slow at math. I learned that this is a test where you need to get through a lot of problems in a little amount of time, so it is really necessary for me to have that extra time. Overall, I had a great practice SSAT experience and I will let you know how my real SSAT test goes with my Accommodations in the fall. To apply for Accommodations, my mom registered me on the SSAT website and applied for the Accommodations by submitting papers and having a teacher at my school approve me for the special Accommodations. If you have T1D and are going to take a BIG, important, standardized test that will affect your future, you should apply for Accommodations.

Jamie with brotherApril 2: I am so happy for my brother because he is turning 7! I was just thinking about parties and then thinking about party food and then thinking about gluten-free party food, so I thought about gluten-free cupcakes. My family and I have tried A LOT of gluten-free cupcakes and our favorite is the Lucky Spoon cupcakes. They come in packages of 4 and are ready to eat or freeze. Unlike many other gluten-free cupcakes, they are absolutely delicious. Also, on many packaged food’s nutrition labels, it under counts how many carbs are in the food item. I think it is wise to bolus a little bit more than the label says so that you will not go too high while you are busy celebrating and having fun. By the way, if you cannot find Lucky Spoon cupcakes, (some Safeways sell them) then you should go to Whole Foods Bakery and get one of their little gluten free cakes – they are also really yummy. My family and I like the vanilla confetti and the chocolate cakes at Whole Foods. We NIMA’d both of these cakes and they are both smiley-face gluten free. We really appreciate Lucky Spoon cupcakes and Whole Foods Bakery!

Caption:  Do you see the little circle GF sign?  That means Certified gluten free!  (This means less than 20 ppm of gluten! More of the technical rules are here if you are interested.  The circle GF is enough for me! https://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/Allergens/ucm362880.htm
Do you see the little circle GF sign?  That means Certified gluten free!  (This means less than 20 ppm of gluten!)  The circle GF is enough for me!

April 7: Since I have celiac, I can’t eat many things that are out and about. However, when something is made certified gluten free, it makes me feel happy. These simple pleasures make life a little bit happier and it makes life easier for me. For example, I was going to the local Froyo store, Swirl. It has been one of our favorite places for dessert for years and years and years, but since I got celiac, we could not be sure it was gluten free. Also, only a few of the basic flavors were possibly gluten free. Sometimes, I would just decide to risk it (don’t tell anyone! Shhhhhhhh!) while looking at the ingredient list where there was not any obvious gluten, but we couldn’t be 100% sure. But today, when we arrived at Swirl, there was a little “certified gluten free” sign on every single one of the flavors – including a brownie one! This clear gluten free sign was completely new, and it was really surprising and made me feel really special. Thank you Swirl!

April 8: Another simple pleasure that I experienced was going to P.F. Chang’s -one of my favorite restaurants- and finding out that they also have truly gluten free options and take being gluten free very seriously. Prior to having the NIMA, I was never quite sure if their delicious food was safe for me (there are many restaurants that accidentally claim that their food is gluten free when it is not!) Today, we ordered 3 of their dishes from their special gluten free menu and tested them with the NIMA. We found that all three of the dishes were gluten free – like they say. It was a really happy discovery and these little things help people like me feel better. It really made my day. The beef with broccoli, the minced chicken in lettuce cups were my 2 favorites!

Simple pleasures – the smiley face on the NIMA is one of mine!
Simple pleasures – the smiley face on the NIMA is one of mine!

April 10: Today, I had my quarterly clinical trial doctor appointment with Dr. Buckingham and his team.  I also had my quarterly blood draw.  Blood draws (to get my A1C) are my least favorite part of being in the study. However, it is one of the study’s rules so there is no flexibility. I wish that they could just do the test with a finger stick instead of a blood draw, but they cannot because of the rules.  Although I do not like blood draws, I still have to get through them. Since this is something that people with diabetes have to experience a lot more than regular people, I thought I would talk about some strategies for dealing with blood draws or anything else that anyone might feel is painful. When I was 2 years old and just recently diagnosed, I didn’t like it when I had to have a new set inserted. So every time my family had to change the set, I would watch “Little Einsteins”, my favorite show at the time, (where four friends solve problems and zoom around in their rocket) to occupy my mind. I think that whatever you are interested in is what you should do/watch when you need a distraction and are having a painful procedure. Another example of this is that when my little brother (without diabetes) went to get his vaccinations last year, he screamed (super loudly!) until I had the idea that he should watch Pokémon videos. Since my brother is absolutely obsessed with Pokémon, he stopped screaming almost immediately and didn’t even know that the shot had gone in. Distractions work! Nowadays during my blood draws, since I love reading and talking to people, I usually read one of my books or talk to someone about all of the interesting things going on. I encourage you to do what you like to do if you ever need a distraction – hopefully it is something stationary!

I got all of my new study supplies today  - loaded up for the next 3 months!
I got all of my new study supplies today  – loaded up for the next 3 months!

April 24: Today, I had a TV interview about how my life has changed since I have had the Medtronic 670G. We talked about how I can still do everything I want to do even though I have type 1 diabetes. They got some videos of me doing things I love to do like Tae Kwon Do and playing the violin. At the beginning of the interview, they asked for my mom and I to do some cooking together in the kitchen for some fun family footage.  However, my mom said no because cooking stresses her out (sorry Mom!) so we just chatted at the kitchen counter instead. They asked me if I had ever felt like diabetes had ever held me back in any way and I responded that diabetes is just an extra step that I have to take. It doesn’t prevent me from doing anything, it just makes me have to do one more step than everyone else. This one step doesn’t stop me from doing anything, it just means that I have one more thing to think of, which isn’t that bad. I told them that having diabetes might have even made me more self aware than I might have been if I didn’t have diabetes because I have to check in with myself to see how I am feeling. Also, they asked me how this new device has affected me and my family. I said that it has made us get more sleep, leading to us being less cranky, leading to us being a happier family. Thank you Medtronic for making  a happier family!  I am really excited to see how the TV interview turns out! They will make it into a story, edit it and then send me a link in about 8 weeks. I can put it on the blog when I get it.