The BFF Guide to Type 1 Diabetes

Editor’s Note: This content is a part of Beyond Type 1’s guidebook, which includes guides for everyone who has a type 1 in their life. Check out the rest of our customized guides for the different people in your life here!

What is Type 1 Diabetes (T1D)?

Type 1 diabetes is a disease that cannot be spread like a cold can. It is an “autoimmune” disease, which is a fancy way of saying my immune system attacked my pancreas (like a person’s immune system will attack a cold), and I can no longer produce insulin on my own. No one knows the exact cause of diabetes … yet. You do not get T1D from eating sugar (actually, it can be insulting to someone with T1D to hear that).

So what does that mean for me?

When I was first diagnosed, I had to spend a lot of time in the hospital. I had IVs, lots of needles, and it was really scary. It was there that I realized that my disease is life-threatening. It made me really sad and scared. Without a working pancreas, I am now considered “diabetic.” I have to make sure that what I eat is balanced with insulin. Insulin isn’t a cure, it’s part of my maintenance to stay healthy and most importantly, to stay out of the hospital! Insulin is a hormone that is normally produced by the pancreas that helps the body break down glucose (from carbs) for energy. Too much glucose in my body that isn’t ushered away by insulin can make me really sick. Same thing goes for carbs! When my body burns off too much glucose and my blood sugar goes down fast, I have to eat sugar/carbs to bring it back up. So, technically, I HAVE to eat that cupcake! It’s a fine balance that I’m still learning, but I have my family and friends watching out with me to make sure that I stay on track.

How do I manage?

I wear a couple of devices, one is the Dexcom CGM (Continuous Glucose Monitor) that tracks my blood sugar and keeps me updated on what range my blood sugar is in. With my Dexcom, I get to have a phone that connects me to my parents where they can monitor my blood sugar as well. I also wear the Omnipod Insulin Pump. It is a tubeless pump that communicates with my blood sugar meter and gives me the right portions of insulin when I need them (usually at mealtimes or when I want a snack). You might hear me say “bolus” a lot, but that just means a dose of insulin for my food and to bring my blood sugar down if it is too high. I used to take injections, but I got tired of the needles!

Everyone with diabetes is different and we all have customized doses of insulin that work best for our bodies! To keep me healthy, I see an endocrinologist (special doctor) every three months where we look at all my numbers and figures and we are always adjusting my doses. They also check me over to make sure that my pump sites look good and I’m not developing scar tissue (which happens if you keep using the same area to inject and can make the insulin not work as well).

Monitoring and treating

What is all that beeping?

I beep a lot. My Dexcom, which monitors my blood sugar, beeps when I am too high or too low. It also beeps when I am too far away from it or when it needs to be changed (I change it every week). My pump, which gives me my insulin, beeps when it is running out of insulin or when it needs to be replaced (it gets replaced every three days). All this beeping is to keep me aware of when I may need a treatment, so, if you hear me beeping and I’m not paying attention to it, please remind me to check whatever is beeping. Sometimes, I hear it so much that I don’t even realize I’m beeping.

Aside from beeping, how else can you tell when my blood sugar is high or low?

Sometimes, my Dexcom may not be accurate, or I may be taking a break from it and not wearing it. You can also tell when my blood sugar may not be right because my behavior can be affected. Sometimes, my behavior will not change at all. When my blood sugar is low, which is under 80, I usually feel shaky, hungry, sweaty and dizzy. When my blood sugar is high, I get shaky, dizzy, thirsty, hyper, tired and have to use the bathroom more often. In both cases, I can have a tough time concentrating. Please be patient with me when I am like this and, if I’m not doing it myself, please remind me I should probably check my blood sugar.

What should I do when my blood sugar is high or low?

First, I should always check my blood sugar using my meter. I poke my finger to get a little bit of blood out, so I can get an accurate number. The Dexcom is great, but nothing is more accurate than when I test my blood.

 A typical day

How often do you need to check your blood sugar?

I test my blood sugar, at a minimum, before every meal and before I go to bed.

How do you check your blood sugar?

1. I clean my finger
2. I insert a test strip into my meter
3. I poke my finger
4. I apply the blood drop to the test strip
5. I wait for my number to show up

What do you do with this information?

Based on this number and the number of carbs I plan to eat, my pump/meter calculates the amount of insulin I need to keep me on target.

What do you do during the day?

I wear a device on my skin called a CGM that shows me close to what my blood sugar is. It warns me if I am going high or low, which I talked about above. I carry an iPhone with me because it has an app that allows my CGM (I use one by Dexcom) to talk to my phone and send my blood sugar data to my parents, so they can also keep tabs on me. The pump I wear also gives me small amounts of insulin each hour that has been programmed to keep my number steady.

What else do you do on a typical day that would be different from someone without T1D?

Nothing.

How can we help?

• Please do not ask me “if” I can eat something. Just ask me if I would like to eat something. I can eat everything anyone else can … within reason. I mean, I still need to be smart about my food choices and eat healthy like everyone else.
• If you have nutritional information about a food, please keep it aside for me. If we are eating together, I need to bolus (or take insulin) for my carb intake. This information is usually on the box or bag that food may come in.
• Please remind me to grab my diabetes stuff. I have a lot of tech stuff, and, sometimes, it’s hard to remember if I grabbed everything.
• Also, please be patient with me when we are leaving for some place. If I am rushed, I am more likely to forget something I need.
• I can ride my bike, play baseball, run and do all those types of fun activities. Just please be patient with me if I need to take a break and check my blood sugar or have a snack.

Questions

Does wearing a pump hurt?

No. Not all the time. Sometimes, it hurts when it fails. If I bump it too hard or the site hurts, then I need to take it off and replace it with a new one somewhere else on my body.

Is there anything you can’t do that other kids do?

I can do anything other kids can do. I just have to check my blood and bolus (take insulin) if I’m eating. If I’m exercising and low, I need to eat.

Anything you had to miss that made you sad because of your blood sugar/pump issues?

Sometimes, I miss recess or am late to lunch because I’m too low and have to get my blood sugar back up in the office at school.

Does testing your blood sugar hurt?

No, but the lancets at the hospital are a little rough. My fingertips are pretty holey because of all the finger pokes!

Will you have this when you’re grown up? Can you get a job and go to college with it?

I hope there is a cure, so I won’t have diabetes when I grow up. But, yes, I will always have it, and I can get a job and go to college.

Is there anything cool about having diabetes?

Not in my opinion, but I do get to skip class if I’m not feeling well. I get to have snacks if I’m low. I also get to carry an iPhone for my Dexcom Share app. As an ambassador, I get to show other kids and newly diagnosed kids that it’s not so scary.

What sucks?

I have to be delayed before I eat. I have to be poked all the time. The obnoxious symptoms bug me, too!

Scenarios

Low

If I’m pale, shaky, sweating with a far-off glazed look, or slurred speech, I may be low. Check my Dexcom or have me check my blood sugar. If I’m low, please treat with 15 – 20g of carbs, like:

• 1 cup / 8 oz. of TruMoo Chocolate Milk
• 15 – 20 Skittles
• 1 cup / 8 oz. of Coke. NOT Diet Coke because there are no carbs in Diet.
• 4 Glucose Tabs that should be in my Diabetic Bag

I may need assistance with portioning out the treatment.

You can always have someone contact my parents if you do not know what to do.

If you hear my Dexcom beeping, please ask me to check it for warnings.

If unsure, it is better to err on the side of caution and give me a snack.

High

If I’m frustrated, angry, or slow moving, I may be “high.” My insulin is sometimes slow to work. I could also be having a pump failure or I may not have taken enough insulin the last time I ate. Please contact my parents before I take any insulin. In this instance, it is better to err on the side of caution by not immediately correcting the high because I do not want to get too low.

See the rest of our customized guides here.