Global T1D with Jamie – Winter 2019/2020

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Jamie Kurtzig was diagnosed with type 1 diabetes (T1D) at the age of 19 months. Now 15, she has been writing about her experiences on a blog series since 2017, first as “Diary of an Artificial Pancreas” and most recently under the title “Looping with Jamie”. Her family will be living in the Ukraine and India over the next year and will be JDRF Global Advocates during this time. Jamie will continue to write her blog from abroad. 

By Jamie Kurtzig

December 15: Onederland: My Childhood with Type 1 Diabetes Book Launch!
I had an absolutely amazing day at Book Passage today launching my new poetry book, Onederland: My Childhood with Type 1 Diabetes . Thank you so much to everyone who came and supported me! It was a truly magical day. ALL PROCEEDS GO TO TYPE 1 DIABETES NONPROFITS, INCLUDING JDRF! Here is a little bit about Onederland:

My poetry book, Onederland, is a collection of 100 poems I have written throughout my life (from kindergarten to high school). The poems cover topics ranging from type 1 diabetes to sunsets to worn-out shoes. By purchasing a copy and looking at the world through my eyes, you will be supporting type 1 diabetes non-profits and their groundbreaking work toward finding a cure and improving the lives of millions of children and people, like me, who live with type 1 diabetes. I have been living with type 1 diabetes since I was one year old, and it is my dream to
be a part of finding the cure. You can buy Onederland on Amazon,  Barnes & Noble  and Book Passage. Here are also some articles about Onederland in the Marin IJ, diaTribe  and Diabetes Mine.

CGM Shopping Guide & SURF!
I have had the amazing opportunity to do some work with Dr. Scheinker of SURF (Systems Utilization Research For Stanford Medicine) on comparing different CGMs. Click on the above link to see a presentation that we made that compiles information about the Dexcom G6, Dexcom G5, Abbott Libre, Medtronic Guardian 3, and Senseonics Eversense. Thank you so much to Dr. Scheinker, Josh, and Andrew for helping me with this presentation and for listening to me give it! You can find more information about SURF and all of the cool stuff we are doing here. Please look at the website to learn more about CGMs and other ways that technology, engineering, and math can be applied to medicine. You can also learn about SURF’s work with CGMs here.  It is a great organization that is doing so much amazing work from maximizing Stanford hospital’s efficiency to automating target-based care.

Permit Test!
Since I am now 15 ½, I am taking my permit test! After doing the online driver’s ed program, I went to my local DMV to take my test. The test was actually more difficult than I expected, but I passed by 1 question! I am now practicing my driving skills, and I really like driving. So far, there have been no accidents. I’m keeping my fingers crossed it stays that way!

Finals
It’s that time of year again! Finals time is always a tricky time for everyone, but it is especially hard for people with diabetes. Even though I get time and a half on my exams in case I have an out-of-range blood sugar, the finals were extra difficult for me this time because my OmniPods kept failing. This problem started while I was in Ukraine and kept getting more and more frequent. The problem with Pod failures is that I can’t really be sure if I am just having a
high blood sugar or if my Pod failed. Because of this, I would wait a while before changing my Pod. By the time I actually changed my Pod, my blood sugar would be in the 300s or even 400s. I would then give a giant shot of about 10 units to get my blood sugar back down. But then, I would not know if the new set was working or if it was just the insulin from my shot. During this finals week, I needed to ask for an extension on an essay and even stop in the middle of an exam! This was definitely a first for me. My blood sugar was sky high, in the 400+ range, and when I changed my Pod, that new Pod failed also! Because my blood sugar numbers were so high, I couldn’t think straight. I arranged to leave in the middle of my exam and come back later that day after my blood sugar numbers were better. When I came back and reread the essay I had been writing, the essay sounded absolutely terrible! Although I was at first resistant to stopping in the middle of my final, I am glad I did because I was not able to think well enough to write a clear, cohesive essay.

I’m still not quite sure what happened that week. I have not had any Pod failures since then, thankfully, but I have not been able to identify the problem. This is just a reminder for everyone to ask for what they need and not be afraid to get accommodations or make changes because of diabetes.

December 25-January 1: Holidays!
I am wishing you a very happy holiday season from Hawaii! As always, I am wishing for more time with friends and family, health and happiness, time to relax, and a cure for diabetes! This year specifically, I am also wishing that I can stay connected with my friends and family during my year abroad and have lots of amazing adventures in India.

I also take my New Year’s resolutions pretty seriously. Some of my resolutions are to help people with diabetes in India and beyond, sell lots of Onederland books, practice violin for 100 consecutive days, try yoga, and get my driver’s license! I hope you have an amazing holiday season! Talk to you next decade! 🙂

Jan 3 & 4: Travel to India!
From Hawaii to California to Singapore to Bangalore! All of this travel took over 45 hours! I think I watched 5 movies (I highly recommend A Dog’s Journey and the live-action Aladdin). The traveling went very smoothly, with no low blood sugars or notable high blood sugars. For the first time in forever (quoting Frozen), I think that all of the meals on all of the plane flights were gluten-free and delicious. I normally eat packaged gluten-free food that my family and I carry on, but I did not need to do this because the food was so good!

You might also be wondering what I packed, and the answer is too much. I am bringing one suitcase full of my clothes and chemistry lab supplies, one suitcase full of diabetes supplies and another full of gluten-free food, my carry-on mini-backpack full of diabetes supplies for the plane, and my violin!

My Life in India
If I needed to describe India in 2 words, I would say it is colorful and crowded. First, everything is super colorful here from clothes to decorations to cars to foods. Also, India has the second biggest population in the world to China. India has about 1.3 billion people, and Bangalore has 13.5 million of them. Even San Francisco, the closest big city to my town, has only about 700 thousand people. There is also a lot of pollution here because there are so many
people. I am still getting used to all of this.

Here are a few more observations about India:

● The driving is crazy with autos and scooters swerving in and out of cars and traffic lanes, up to 4 people on a scooter, traffic taking 10 minutes to go 1 mile, and autos with no seat belts or car doors. I am shocked I have only seen 1 accident here so far. Bangalore was also recently named the city with the worst traffic in the world!
● Most people in India speak English and/or Hindi, but Bangalore’s local language is Kannada. About 70% of India is Hindu and 20% is Muslim, but, in general, the two religions don’t get along very well.
● India has more vegetarians than all of the rest of the world combined! Signs even need to specify “non-veg” if they serve meat. Bangalore’s food is less spicy than North Indian food, but I still find it pretty spicy. However, I actually love Indian food. Some of my favorite dishes are dosa (basically an Indian crepe), dal with rice, idly (rice cake), and paneer (cheese). I also love mango lassies! I have found that many of the ingredients in
Indian food are gluten free, except for samosas, chapati bread, and naan. However, because of cross-contamination, I cannot eat most of the food.
● I have also noticed that my blood sugar numbers have been remarkably good since I came to India. I don’t know what I have been doing so differently, but over the last 30 days, my time-in range has been 80%!
● Students in grades 6 and up go to school on Saturdays! I feel so bad for my sister, Kelly, because she is in 6th grade! Even though I have school until 12:30 AM (because I do online school based in California), I still feel lucky I do not need to do this! Education and grades are very emphasized in India. Grades are posted publicly for all to see. Memorization is encouraged and required. Students have 10 classes each day. Engineering is considered the ideal job.
● There are lots of wild cows and dogs on India’s streets! Some cows, which are holy animals in India, were colored yellow for a holiday a few weeks ago.
● I would encourage people to see Indian movies, especially “Three Idiots” and “Slumdog Millionaire.”
● Despite all of this, I feel pretty homesick because I have been away for so long. I have had some amazing experiences here, but I am also excited to return home.

American Youth Understanding Diabetes Abroad (AYUDA)
I am so excited that I just got accepted to be a 2020 AYUDA volunteer! AYUDA is a nonprofit organization that helps children and families living with diabetes in the Dominican Republic. As part of this program, I will be spending 1 month in the Dominican Republic helping people with diabetes. I am super excited to help and spread hope to people all around the world. I realized that since I live in the Bay Area, I can access so many resources, but these resources only benefit a small percentage of people living with type 1 diabetes. This will also be my first time traveling to and staying in another country by myself. Learn more about AYUDA here.

Jan 9: My Diaversary & Meeting with Dr. Kumar
I don’t know whether I should be happy or sad about my diaversary today. 14 years ago today, when I was only 1 year old, I was diagnosed with this life-changing condition. Before I knew I had T1D, I threw up every day, I didn’t want to play, I didn’t want to eat, I was always really thirsty, and I would just lie down, totally lacking energy. Because I was so young that I couldn’t communicate my feelings in words, my parents were terrified that I might die.

I do not remember my life before diabetes, so I guess I have nothing to compare it to. But regardless, let’s face it: diabetes sucks. Managing my diabetes takes up much of my day. Insulin is too expensive. Out-of-range blood sugars have landed me in the hospital. There are no breaks. There are too many factors (42) influencing my blood sugar. There is a negative stigma surrounding diabetes. And most importantly, there is no cure. However, there is so much hope for the future. Throughout these past 14 years, I have experienced many advances in technology, switching from 12-plus daily finger sticks and shots to insulin pumps and continuous glucose monitors to closed-loop systems. Hopefully, we can find a cure before my next diaversary! In honor of my diaversary, I met with a local Bangalore endocrinologist who I met at the 2019 ADA Conference. I heard Dr. Kumar speak about diabetes in India, and, since I knew I was going to India, I connected with him. Here are some things I learned from him:

● In India, more people have type 2 diabetes and obesity rather than type 1 diabetes. He says that even though people eat healthy foods, in general, people do not get enough exercise.
● Dr. Kumar’s clinic offers lots of treatment for diabetes complications at their clinic. For example, they screen for retinopathy at the clinic, and if someone has retinopathy, they can visit an ophthalmologist in the clinic. This is because it takes a lot of time to visit multiple doctors. They also have a tool that automatically measures height and weight.
● Dr. Kumar’s 5-10-year-old patients have an average of 9% A1Cs, teens have an average of 8.5% A1Cs, and adults have an average of 7% A1Cs.

January 10: Dr. Srikanta Meeting
Today, I had the amazing opportunity to meet with another local endocrinologist in Bangalore, named Dr. Srikanta. He helps hundreds of patients with diabetes at various clinics regardless of their socioeconomic status or geographic location. He has been nothing but kind to me and my family, and we are excited to continue working on some projects together! Here are some things I learned at Dr. Srikanta’s clinic:
● People use Novorapid and Actropid insulin here, they get 1 test strip per day, and they take a maximum of 3 insulin doses per day. One child at the clinic ate a pack of cookies without bolusing for it because it was not in his 3-shot-a-day limit.
● Dr. Srikanta offers free clinics on the first Sunday of every month to give free food, insulin, and medical supplies to people with diabetes.
● Although many people here are tech-savvy, people cannot access diabetes technology because of the cost. Of Dr. Srikants’s thousands of patients, only about 10 use insulin pumps, the most popular pump being the Medtronic 640.
● Like Dr. Kumar, Dr. Srikanta offers treatment for diabetes complications in the clinic, including ophthalmology, heart testing, a foot clinic where they make custom footwear, and treadmill testing.
● Although the average A1C is 8-9%, many patients stop taking insulin because they get tired of diabetes or don’t want to take insulin in front of their friends. I met three boys with type 1 diabetes. All of them had 12 or 13% A1Cs and were extremely short. We thought that an 8-year-old was only 4 years old.
● Most schools and workplaces do not like the liability of having people with diabetes, so they do not accept them. Because of this, many people do not tell others about their diabetes and try to keep it a secret, even from their relatives. At many workplaces, people are not permitted to take blood sugar meters, insulin, and diabetes supplies inside. Also, most schools do not have nurses (but some international schools do).
● Although I wanted to help with this social problem, Dr. Srikanta said that it will take many years to change this part of Indian culture.
● My family and I are excited to attend Dr. Srikanta’s first Sunday of the month clinics and donate some supplies.

January 25 & 26: Mysore Trip
I had such an amazing time in Mysore! It has definitely been the highlight of my trip so far. On our 4-hour drive to Mysore, our first stop was the Mysore Palace. This was a beautiful palace with ornate decorations and tons of history. Here are some fun facts about Mysore Palace: The current King and Queen of Mysore (who have positions similar to the King and Queen of England) both went to Boston University! There was also a chair that was 750kg of gold!

Next, we went to the zoo where we saw elephants, zebras, sloth bears (I didn’t know these existed), and mice in the same cage as a giant snake. However, this was nothing compared to what we did the next morning. I would say we woke up bright and early to go on our safari, but we woke up at 5 AM before the sun came out! And, I am not a morning person. However, this early wake-up call was totally worth it! It was one of the craziest experiences of my life! We saw deer, monkeys, jungle fowl, and even a leopard from afar. The highlight was being 15 feet away from an elephant and its calf. The elephant then trumpeted at us super loudly! I thought I was going to get trampled! After this once-in-a-lifetime safari, we embarked to Shri Chamundeshwari temple, a Hindu temple flocked with people. Like in many temples, there were no shoes allowed. We also saw the Muslim Sultan’s summer house in Srirangapatna. This house had so many beautiful paintings showing the history of Muslims in India. It was very ornately decorated and everything had a story. Last but not least, we went to a saree shop, possibly one of the most colorful places I have seen in my life. I had an amazing weekend and am looking forward to exploring more of India!

From top left to bottom right: Shri Chamundeshwari temple, a dog on India’s streets, the Muslim Sultan’s summer house in Srirangapatna, a colorful market, driving is crazy here with up to 4 people on a scooter, silks from a saree shop, cows are sacred animals, people put out rangoli made of sand every day outside their doors, Indian rupees.

February 2: Dr. Srikanta First Sunday of the Month Clinic
Today, I met with Dr. Srikanta and his team again at their first Sunday of the month clinic. My family and I spent 7 hours at his clinic meeting people with diabetes and discussing plans for the future. This was the first of 3 clinics that I will be joining. First, I talked to families and kids of a lower socioeconomic status who cannot afford CGMs or insulin pumps. I helped distribute supplies and food that Dr. Srikanta offers them for free once a month. I enjoyed talking to these kids and also presented to them about the importance of hope in diabetes and my best tips for managing my T1D. After a gluten-free lunch prepared by Dr. Srikanta and his team, I presented to the patients of a higher socioeconomic status who were able to use CGMs and/or insulin pumps. I talked to them about T1D technology, specifically insulin pumps, CGMs, and artificial pancreas systems. I am so happy to be helping out with diabetes in India because many people here do not have the same resources that I have access to.

At Dr. Srikanta’s first Sunday of the month clinic.

February 9: Meeting with DIYA Leaders
Today, I loved meeting with Diabetes India Youth in Action (DIYA) leaders! DIYA is “a non for profit organization that aims to de-stigmatize and raise awareness about Diabetes” all throughout India. You can learn more about DIYA here http://diya.org.in Thanks for your work improving the lives of those with type 1 diabetes! I am excited to keep working with you!

Meeting with Diabetes India Youth in Action (DIYA) leaders.
My unfortunate low blood sugar. Note the time at the top of my screen.

February 12: Low Blood Sugar
At 3 AM this morning, after going to bed after my classes at 1 AM, I had an extremely low blood sugar. I’m not quite sure what happened, but my blood sugar was so low it didn’t register on my CGM. Thankfully, my Dexcom alerted me to this low blood sugar. I felt super shaky, hungry, and even a little light-headed. I don’t think I was thinking clearly either. This is a reminder that even with technology, my blood sugar numbers are still not perfect. This is why we need to find a cure. We need to keep going until we are sure that no one will ever feel the same way I did this morning. To the cure!

February 20: Omnipod Malfunction
Yet another diabetes problem! When I was changing my Pod, I noticed that I didn’t feel the needle go in. After watching my blood sugar numbers rise shortly after this, I decided to change my Pod again. It was true! The needle had not gone in yet. However, when I was examining the Pod, the needle popped out and pricked my finger!

February 21-23: Kerala Trip
I am so excited to go to Kerala, a southern Indian state, this weekend! After arriving, we went to Amma’s ashram. Amma is famous for giving hugs to all and for letting all people stay at her ashram for little charge. There are daily free yoga and meditation sessions. Although the ashram was not my favorite place, it was definitely one of the strangest experiences of my life. The ashram did not have great conditions, especially for sleeping, yet some people had stayed at the ashram for 30+ years! The next day, we moved to a houseboat in the backwaters of Kerala. I loved seeing the natural beauty and even boats selling ice cream!