Ally From Very Light No Sugar Shares Her Thoughts On Diabetes And Technology
Ally is the author of the popular DBlog, Very Light, No Sugar. A couple weeks ago, we got in touch with her to hear her story and learn more about how she manages her diabetes. Ally is a “career diabetic,” diagnosed at the age of 3. We wanted to know her thoughts on diabetes technologies and how she weaves diabetes management into her everyday routine.
Disclaimer: Everyone’s experiences are different. In no way should anything in this post replace medical advice from a doctor. We are not sponsored by any company, nor do we endorse any products.
Thanks for taking the time to speak with us today! Since many Type 1s are diagnosed when they’re very young, our first question for you is, how did being diagnosed young affect your childhood experience?
A: I didn’t want to feel singled out or different from my peers. I think you just deal with so much as a Type 1 kid. You’re taking shots multiple times a day, your blood sugar is fluctuating. You learn to put on a brave face very early on and very often. Just getting through the day with Type 1 is a lot. So, from a very young age, I always had the mindset that I would take care of things myself. I didn’t want to see other people upset or worried about it.
In retrospect, I think I was almost too extreme with that. Because then you get into adulthood and you realize that the tough days still happen, and it’s only natural to have some emotions about it. The online community has been really good for me in that regard, because I’m able to tweet if I’m having a bad day, and a bunch of people get it. We didn’t have that back then. I didn’t really know many other Type 1s as a kid.
I approach diabetes from a more holistic point of view now. You don’t want to be a Debbie downer about diabetes all day. But if you’re having a rough day, there’s nothing wrong in showing it.
“It doesn’t mean that you’re not strong if you admit that it’s tough sometimes.”
How do you weave diabetes management into your everyday routine?
A: It’s always there. Sometimes, I wonder what it would be like to just wake up, roll out of bed, and go to work! It always boggles my mind when I think about what a Type 1 Diabetic does within the first hour of waking up.
You have to wake up and take insulin. And if you’re going to function in society, you’re going to have to wake up a little earlier, and still get to work on time. Diabetes is always there. I’m lucky my coworkers have really made an effort to understand diabetes. They’re really supportive of me, which makes it easier for me to deal with it at work.
Routine helps me. I tend to eat the same things. I run at the same times. That makes it a little bit easier. I eat relatively low carbs because the high carb diet can spike your blood sugar. Little tricks like that to try and ease the ebb and flow of the blood sugars. That’s what I try to do. But it’s a tough disease to manage day-to-day.
I think work stress, illness, and hormones can have a really big impact on your blood sugar. So that’s what’s hard for me as an adult.
“But you have to wake up and deal with it. That’s kinda my motto.”
What technologies do you use for diabetes management?
A: I used to take injections as a kid. I would take pig insulin. My mom would come to my school and measure my blood glucose levels during recess and lunchtime.
I started using an insulin pump in high school. It was great. It gave me a lot more flexibility. I didn’t want attention for diabetes at that point. It was nice to be able to reach to my side, press a button on my pump, and take insulin. I didn’t have to worry about going to the bathroom to take an injection. So the pump is great in that regard. It gives you a lot of freedom.
Unfortunately, as time went on, I wasn’t getting insulin delivered adequately into my system from the pump. And then they identified a product defect with the pump I was using. I was getting very sick because a Type 1 Diabetic needs insulin to live, and I wasn’t getting insulin into my body every time I changed my pump site.
So then I switched back to the shots. With shots, once insulin is in you, it’s in you. So it’s different. In some ways, I feel like I’ve come full circle, because I was on shots as a kid and now I’m back on them. But I may go back to the pump as the technology develops.
“What I like is having the freedom to choose for now what works for me.”
What is the hardest part of your day?
A: I think the hardest part is waking up and taking care of my blood sugar. Because that usually sets the tone for my day. If I wake up with my blood sugar higher than I’d like it to be, then I’m playing catch-up all day, because I’m starting off the day insulin resistant. It becomes a guessing game. Should I double the dose of my insulin? But then I might go low. It’s weighing all those factors.
I think that’s the one thing I miss about the pump. My control was better overnight. Now it can be a coin toss sometimes as to what’s going to happen on Lantus overnight. So if that part of my day could be easier, it would make a big impact on the rest of my day. That’s something that I would like to see stabilize.
“I would just feel better if I could have a better sense of where my day is going to go. Ideally, in the future, machines will make some of these decisions for us.”
Do you see yourself switching to the pump or sticking with injections?
A: For many years, the pump worked great for me. In high school, it was a big game-changer for me. With technology, you expect that you might have a tech problem once or twice a year. Maybe a kinked cannula, or having to change your pump site. And that’s fine. But the frequency at which I ended up having problems with the pump was just too much. The benefits of using a pump were outshadowed by all the problems I was having.
When the pump is functioning well, it’s great in terms of the quality of life that it gives you. Being attached to something didn’t really bother me because there was so much freedom that I got from it. When the pump wasn’t working well for me, it was really impacting my emotional health, because it was always a guessing game. Did that insulin actually get into me? Did it not? Why is my blood sugar high? Is the pump not working? So I was playing those games all the time. Lo and behold, there was usually a problem with my pump.
Going back to injections was a lot of work. But for me, it was the right choice at that time because it eliminated a lot of the guesswork I had to do. I know now that insulin is going into my body, because I can see myself inject it directly.
I will throw out the disclaimer for the pumps that my situation is definitely the exception of the norm. I think a lot of people do experience tech problems from time to time, but my situation was odd in the frequency at which I had issues with that specific product. So maybe in the future, I might try a different brand of pump.
What type of CGM do you use?
A: I use a Dexcom CGM. I’m very happy with the quality of the product and I think the accuracy is good. Dexcom is a very innovative company and they’re only going to continue to develop. In my lifetime with diabetes, the CGM has probably been the biggest game-changer for many of us diabetics. I go to bed and I sleep a bit easier than I used to because I have a lot of trust in Dexcom. It’s nice to press a button. It’s given me a piece of mind. It allows you to be more confident in your day-to-day life.
I was a little kid on the playground in grade school, on pork sourced insulin that made your blood sugar crash at lunch. No one could really see what was happening. I couldn’t really articulate it because I was so young. With technology today, I could be at a meeting at work, and I could look down and see that I need to take more insulin.
“Dexcom has helped my quality of life.”
What advice would you give other Type 1 Diabetics?
A: Diabetes can be a jerk of a disease. It likes to kick you when you’re down. But my advice would be to make sure that you’re putting your life first. You always have to be prepared and ready to deal with diabetes. But don’t live in fear, because you still want to have a quality of life. You can still do what you want to do. You’re just going to have to learn how to be better prepared and hopefully diabetes will take a backseat. But that’s also easier said than done. I think as corny as it sounds, life does just go on.
I would tell people to be confident in their abilities to handle diabetes. There’s always going to be problems from time to time, because an autoimmune disease can often have a mind of its own. When you think about how many decisions we make as Type 1 Diabetics, and how much we do every single day, I don’t think we give ourselves enough credit that we’re very capable of dealing with this. So that’s what I would tell people.
“Be confident that you know how to handle this.”
What was the impetus for starting your blog?
A: I always thought that blogging was cool. I was an English major in undergrad, so I always liked writing. I vividly remember once in college Googling “diabetes blog,” and finding Six Until Me, which is probably one of the most famous and well-read of the diabetes blogs. I remember reading it and thinking the author was really funny with how she describes life with diabetes. Very relatable. I wasn’t really thinking of starting a blog at that point.
And then I started having pump problems. I just wanted the support emotionally. I wanted to know if other people were having these pump problems and what they were doing to solve the issue. I was hoping that there was going to be a quick fix for what I was experiencing. Unfortunately, there wasn’t. But I did end up getting that peer support.
And then I got hooked on the healthcare side of it. I’m a healthcare nerd, I work in healthcare. So blogging allows me to explore what I’m passionate about. It’s opened a lot of doors and I’ve met some wonderful people online and offline. I’ve always tried my hardest to manage diabetes well, and connect to the community.
“Blogging is a way of truly manifesting that dream.”
We really enjoyed getting this chance to chat with Ally and hear her story! One of the biggest takeaways we gathered from our conversation was the importance of starting the day with in-range blood glucose levels. Starting the day off too high or too low can affect the day.
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