Today starts a series of Q&A blog posts in which I will be interviewing various people about their experience with diabetes. This first post comes from a fellow type 1 diabetes warrior, wife, and mom who has lived with T1D for almost four decades – Melissa Kayser. Let’s hear her story: 

Question: First, please tell me a bit about your diagnosis. 

Answer: I was six-and-a-half years old when I was diagnosed, just a few days before Christmas that year. I remember getting presents there, seeing Santa in the hospital, being force-fed vegetables, and losing my favorite blanket. When I was released and got home on Christmas Eve, I remember getting a pink 1980s teddy bear that was taller than me, and also having to get my first shot at home on Christmas morning. I also remember not getting to eat my Christmas exchange gift from school – Pacman sugar cookies (I can still see them in my mind). 

Q: Diabetes was treated much differently at diagnosis then than it is now. What do you remember about having diabetes as a child?

A: I remember several hard things about it. I remember not being able to eat Twinkies in my lunch anymore. I remember classmates being jealous that I had to eat a snack and have candy in the teacher’s desk. I remember getting a small stuffed chick at Easter instead of candy from my third-grade teacher. I remember going with my mom and talking to teachers each year before school started about my diabetes and giving them a card to know the symptoms of highs and lows. I remember in sixth grade having someone tell a classmate that she shouldn’t sit beside me at lunch because she could catch diabetes. That of course wasn’t true, but so very hurtful, nonetheless. I was forever grateful for the friend walking with me that not only sat next to me but let the classmate know that what she said wasn’t true. I also remember sneaking full-sized candy bars every day after school when I would walk to the library. I thought I was doing terrible things in sneaking candy, but looking back, I realize the almost-mile walk likely walked off most of the sugar. And I remember almost passing out in high school from a low, and having a friend carry me to the office.

Q: Being so young at diagnosis, at what point did you start to manage diabetes independently? 

A: I don’t remember the exact age, but it was somewhere between 12-15 years old. I do remember that I gave my first shot on my own around that time when my dad was running late coming home from work, and I needed to get to a babysitting job down the street.

Q: What various management tools have you used in your nearly 40 years with type 1? What did you find as pros/cons of the various ones you’ve used? 

A: I’ve used so many! I started on urine strips that were colored to test my sugar levels. Then I moved to blood strips where you could see the lancet drop down and hit your finger (and it was painful). I was on two shots a day (NPH and Regular) for my first 20 years (from age 6 to 26). I had several doctors who did not want to treat me because I didn’t want to move to three shots a day. Ultimately, I did start on three shots per day when I was pregnant with my son at age 26 (2004). I tested 5-8 times a day when I was pregnant. After he was born, I moved to an insulin pump (Animas), and I have now been on an insulin pump for 18 years.  I started on a CGM regularly in 2018. 

The upgrades in technology have, in general, made me healthier with a lower A1C. But they have also come with reliance on machines that can be wrong and fail sometimes, adding another layer of problems to consider with an already extremely complicated disease.

Q: What prompted the changes from one management tool to another? 

A: When I was pregnant with my daughter (2012), I got a new nurse educator who taught me so much about my disease! We found through many months of hard work that my previous doctor was not managing me well and was overdosing me, causing me to have rebound highs and a higher A1C. Once I had my daughter, I left that team because of all I had learned and how they had been giving me poor guidance and direction.

Q: Was changing methods challenging? Anxiety-filled? Relieving? 

A: It was most difficult to change from two shots a day to three shots a day. Almost all the other method changes were relieving for me because I felt that I was moving into a more successful space, and I would have an easier time managing my disease.

Q: How are you currently managing diabetes? 

A: I have a T:Slim X2 insulin pump & Dexcom G6 CGM. While I have the Basal IQ technology on my pump (by choice), I run the pump without it. I struggle to trust the technology enough to make dosing decisions for me without my input.

Q: Trusting technology is something I talk about in my devotional book. Sometimes that can be hard, especially if you’ve experienced it failing in the past.

You have two children… what was pregnancy with type 1 like? 

A: I was under the best control of my disease (mostly A1Cs in the 5s), but it was SO MUCH WORK. I was constantly testing (5-8 times a day) since I wasn’t yet on a CGM, and doing lots of saying no to things I wanted to say yes to, especially during pregnancy. One of my doctors suggested that I needed to stop eating fries when we went to McDonald’s – that was the hardest part. It was just a lot of hard work.

Q: How has your faith played an integral role in your journey with a chronic illness? 

A: As a late teen and young adult, I really struggled to understand why God would allow me to have diabetes. I dealt with a lot of anger, which isn’t something that has simply disappeared from my journey because of my faith. Once I found my verse, I began to cling to it and I saw my disease as a way for God to help me grow in perseverance, as well as to help support others in my same situation.

Q: What verse do you cling to?

A: I love James 1:2-4: “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” 

When God gave me this verse at 18, I found myself finally letting go of some of the anger that diabetes had held me in. As I moved forward with this verse on my journey, it would remind me that in my trials, God is growing me, helping me to learn to persevere, and helping me to mature my character into the person He desires me to be. It also helped me to see that I could not only encourage those starting their T1D journey, but also support kids and teens who were struggling on their T1 journey with anger the way I did. I could help them know it’s ok to be angry at the disease, and I could help their families understand their feelings and actions better.

Q: What would you say to someone who just experienced a diabetes diagnosis?

A: It’s ok to say that it sucks and it’s hard. It does suck. And it is hard. But – it is also doable. Take each day as it comes. Do what you can to learn and try to make changes that you are willing to stick with long term to make yourself a healthier person. Find other people with type 1 who can relate to you and give you support and encouragement on your hard days. And find people who you can give those same things back to on their hard days. While not without its challenges, T1D is something you can learn about and manage to live a long and healthy life.

Q: Is there anything the Devotions on Diabetes community can be praying about for you? 

A: Let’s all pray for a cure. 

---

Melissa is a wife, mother, documentary family photographer, and T1D for 39 years. She loves playing games with her family, being in the great outdoors, and being supportive to those around her, especially within in the diabetes community. You can follow her photographic journey on Instagram or Facebook.

---

OTHER Q&A BLOG POSTS

Q&A: Managing Multiple Chronic Illnesses

Q&A: A Wife’s Perspective on Diabetes

Q&A with a Diabetes Coach

Diabetes Q&A with a School Nurse