Stop the Ride, I Want to Get Off

Hands up if your CGM ever looks like this.

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A 24-hour display that looks this extreme is pretty rare for me. But we all know that these things happen, sometimes without much of an explanation. There are so many factors, from meals and exercise to stress and the weather, that affect blood sugar that it’s impossible to account for them all. It’s easy to get frustrated and upset (especially when lack of sleep is involved)- and that’s okay. We live on the constant roller coaster that is diabetes, day in and day out, with no breaks. It’s only natural that sometimes we feel like screaming, crying, or throwing our meters out the window.

Yesterday seemed to be the perfect storm of events to create that lovely mountain range. I had inserted a new sensor that morning, and I’ve found that during the first 24-36 hours of a sensor session, it tends to get a little over-excited when my blood sugar rises or falls. (The most memorable and extreme incidence of this occurred a few months ago, when my receiver claimed I was 380 a half hour after eating a banana to treat a low. Like, no. Go get your head on straight, Dexcom.) Some of the lows and highs might have been a little exaggerated, but the trends were definitely correct.

When the two hour start-up period ended, and I could finally see my numbers being displayed, I noticed that my blood sugar seemed to be falling from a steep high. I thought this was odd- I had just changed my breakfast insulin-to-carb ratio to ensure that I got more insulin to prevent that high. Additionally, I delivered my insulin 20 minutes before I ate breakfast, to give the insulin time to kick in before I ate. This should have prevented that spike, but without the data from my CGM, I’ll never know exactly what happened.

I confirmed my falling blood sugar with my meter, which reported that I was 69. I ate a 10 carb snack, and began preparing my lunch. My CGM, however, showed the word “LOW” where a number should have been. PANIC TIME! The “LOW” indicated that my blood sugar was below 40. Even though I knew that was probably incorrect, I loaded up on more gingersnaps while cutting way back on my insulin for lunch. It’s hard to ignore the urgent beeps and vibrations when you’re 20 minutes away from driving to work. By the time I was ready to leave, my blood sugar was up to 126. Score!

My Saturday afternoon shift turned out to be pretty busy- the store was packed and I was feeling stressed, which was only compounded by my blood sugars. Try making change, or just trying to make the correct words come out of your mouth, when your blood sugar is 50! During my six hour shift, I corrected a “low”- my CGM lied to me and I was actually about 100- then corrected with insulin for the resulting high.

After I came home, I dealt with several more deceptive spikes and rises on my CGM receiver display, causing me to improperly treat my blood sugars, and just generally stress me out. I spent most of the night over 200, waking up every few hours and woke up feeling really sick- something I haven’t experienced since I started on my Dexcom in March. I was also feeling really discouraged: I had lost several hours of sleep, and was upset about the lack of control I’d had over my blood sugars the day before.

As cliche as it sounds, I knew that today was a new day: I could definitely smooth out those mountains from the day before, and make my 24 hour trend line look more like a straight line than an EKG. I headed back to work (where I tried to keep my blood sugars stable, but that didn’t happen. At least I tried!), kept my stress level down, and gave everyone the correct change.

We all know that living with diabetes can be immensely frustrating, upsetting, and scary sometimes. And life without diabetes is the same way. Everyone has days that just don’t go our way, but keeping things in perspective is important. One day doesn’t define your talent, your abilities, or your progress. For all the T1s reading this- you are some of the strongest people I know, and you all work so hard every day to simply live your lives. If you have a day like the one I just had, just remember that it will get better. The ride will stop (or at least slow down), and the mountain ranges on your CGM will flatten out.

Now I’m off to catch up on some sleep, where I hopefully won’t be interrupted by my CGM.

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Type 1 for the Type 3

Usually, the first thing someone does after finding out I have diabetes is to say something like “Oh, so you can’t eat sugar?” or “Really? But you’re so thin!” (this was said to me word-for-word once). These statements are followed by conversations of varying length and depth about how I didn’t get diabetes because I was overweight, or how I can eat anything, really, as long as I properly calculate and time my insulin doses. Sometimes I’m frustrated with the lack of understanding that most people seem to have about T1D, but the media quite honestly does a terrible job of differentiating between types 1 and 2 when discussing diabetes, and makes no effort to debunk any of the outdated myths that still abound.

Because if I could cure my diabetes with cinnamon, I would have done it a LONG time ago.

With the number of cases of types 1 and 2 set to rise in the coming years, I wanted to put something out there for all of the wonderful people who identify as type 3- a term I learned very recently that refers to all of the friends, family members, and people who support those of us with type 1. It’s so important for the people around us to understand what we have to do, especially those who are new to our lives. So, here it is- type 1 for the type 3.

Type 1 diabetes is an autoimmune disease- we didn’t ask for it, didn’t do anything to cause it, but we’re stuck with it. Our bodies don’t make insulin, which is a hormone we need to convert the glucose found in food into usable energy for our cells. Without insulin, glucose builds up in our bloodstream, and our cells start to die, so we have to take our own, through a pump or injections. Most people think that it’s sugar we need to be careful about, but sugar is a type of carbohydrate- and that’s the nutrient we need to keep track of to calculate our insulin doses. A long time ago, before we could produce artificial insulin, people with diabetes couldn’t eat much with carbohydrates; this is where the “diabetics can’t eat sugar” myth comes from.

The bodies of people without diabetes are able to regulate the amount of glucose in the blood stream (we just refer to this as “blood sugar”), but the bodies of people with type 1 cannot do this automatically. We have to test our blood sugar several times a day (I test mine upwards of 10 times some days) in order to make the most informed decisions about our insulin doses. Many people ask whether pricking our fingers hurts. Most people say that it usually doesn’t- there’s always that one time when you just go “OW! That wasn’t supposed to hurt!” though.

When our blood sugars are low (below 80 mg/dL for people who measure in the United States), we need something to eat- fast. This is a good time to grab something sugary! Otherwise, we may get shaky, dizzy, start acting erratically, or, in extreme cases, lose consciousness. Many people compare having a low blood sugar to being intoxicated. High blood sugars (this varies from person to person, but above 140 mg/dL is a good benchmark) are less pronounced in their symptoms, but can cause a lot of problems in the long run. This is why we do our best to maintain good control of our blood sugars!

Some things we’d like others to know:

-Don’t ask us whether we’re allowed to eat something. We’ve been doing this for years, and we know what’s best for our bodies. Trust us, we got this! 🙂

-Conversely, don’t bug us about choosing not to eat/drink something. Everyone is affected by foods differently. I was once told that I “wasn’t trying hard enough” at managing my blood sugars when I chose to pass on going out to eat. When French fries send my blood sugar up to 500 in the middle of the night, I think I am entirely justified in refusing whatever food I know will require overzealous blood sugar monitoring for the next twelve hours. Once again, trust that we know our bodies!

-Don’t say things like “I could never give myself shots!” You’d be surprised what you could do if it meant, you know, staying alive. We don’t love having to do it, but we don’t have a choice.

-Ask questions! I don’t know about others with T1D, but I actually love answering questions people have. I can go on forever. If you want to know something or don’t understand, ask! It shows a lot more support than making an incorrect assumption.

I realize that this post isn’t an all-inclusive guide to diabetes, but if I tried to do that, I’d be writing an encyclopedia. For all the type 3s reading this, thank you! Your support is invaluable to us, and we appreciate you putting up with our test strips all over the place, and our demands for DIET coke. The world needs more people like you!

Low, Low, Low, Low….

Lows: the only time we T1s can eat without furiously calculating insulin doses.

A few weeks ago, I stopped taking a medication I’ve been on for a few years (unrelated to diabetes), and my insulin needs dropped dramatically. Like, I’m talking reduce-all-my-basal-rates-by-50%, dramatically. I’ve finally worked out all of my doses, but I didn’t get there without having a LOT of lows. Along the way, I’ve learned quite a bit about what foods are best (and worst) to treat with. Glucose tabs are pre-measured and raise my blood sugar quickly, but the chalky taste? Yuck! And the cloud of glucose dust that spews from the container when you open it? No thanks.

Thankfully, I’ve discovered a great alternative to these chalky monstrosities: gingersnaps! (Prepackaged, not homemade or from the bakery.) At five carbs each, gingersnaps are portioned approximately the same as glucose tabs…but they’re actually REAL food, and still quite portable!

Another option I’ve turned to recently is cereal. Now, cereal is known for being composed of quickly-absorbing, simple carbohydrates, which, in theory, is great when trying to treat a low. But I’ve found that even when I eat just a handful of cereal, my blood sugar will spike into the high two-hundreds. Maybe I’m just over-treating…but I’ve decided to be safe and discontinue my use of cereal as a low snack. It’s reserved only for those lows I have at 11pm when I just want to get my blood sugar up and go to bed.

Yogurt! I thought yogurt would be a great snack. At 15-20 carbs per individual container, they’re portioned about the same as a typical 4oz juice box. And they’ve got protein (well, Greek yogurt does), which is known to keep blood sugar steady. But it turns out that all that protein slows down the absorption of the carbs and sugar, and yogurt doesn’t have much of an immediate effect on my blood sugar.

When all else fails, I go back to my tried-and-true low treatments: a juice box or a granola bar. Unfortunately, my blood sugar has a tendency to rise slowly when I’m low: this leads to quite a bit of frustration, and over-treating. My CGM doesn’t help this: I always seem to forget that there’s a lag in my blood sugar as displayed by my receiver, and what my blood sugar is at that very moment when the vibrating, beeping, and steady arrows persist when my blood sugar is in the red. I see a number lower than what I expected 30 minutes after treating, and automatically go for another snack (this would be one of those times I might grab cereal).

Lows are just an all-around pain in the butt. I personally find that I have three “types” of lows: the “I want to go to sleep” low, the “I’m sweaty and emotional” low (which unfortunately seems to happen mostly when I’m at work- I do everything I possibly can to prevent this), and the “loopy” low- feeling silly and dazed. None of this is fun, but sometimes lows are unavoidable. Lately, I’ve been making use of the temporary basal feature on my pump to prevent full-blown lows if I can see my blood sugar dropping, or if I’m at work.

And that’s a heck of a lot more pleasant than eating when you’re not hungry, sweating through your clothes, and doing low-induced silly things like attempting to eat your meter (this actually happened to me once. More on that in a future post.).

Hello world!

Wow! My first blog post on my very own blog. (I’ve been really excited about getting to use my blog title, and I hope you all like it as much as I do!)

Anyway, I suppose I should start out with a little about me. I’ll be 21 in two days, and I just hit my fourteenth dia-versary on July 9th. For many years, taking care of myself was just another thing I had to check off on my to-do list every day: I ate and did pretty much the same things at the same time every day, and things were pretty stable.

But then I went to college, and that all changed pretty quickly. For starters, my school brags about having one of the top dining programs in the country- but the nutritional content of its food sure doesn’t make doing the work of my pancreas very easy. Throw in 25 minute walks to class, stress and anxiety, and a totally random sleep and exercise schedule, and you’ve got a recipe for…well, a mess.

My blood sugars were all over the place, and it was really getting me down, but in my sophomore year, I discovered my school’s chapter of the College Diabetes Network, and all I can say is that it was a godsend. I remember leaving one of my first meetings thinking “wow, these people really GET IT!” (“It” being living with diabetes.)

Through CDN, I made new friends, learned about new meters and pumps, and swapped a LOT of stories and advice about the craziness that is T1D. This past January, I became the president of my chapter, and in May, I attended CDN’s second annual student leaders’ retreat in Maine. I was really inspired by everyone’s enthusiasm for the work they were doing with their own chapters and in the wider diabetes community! That retreat is part of the reason that I’m starting my own blog.

Having lived with diabetes for 5,116 days (plus a few for leap years), I have plenty to say about my experiences. I want to connect with other people who go through the same things I do. And I want to put a humorous spin on some of the things we all go through- if you’ve got to live with it every day, you might as well laugh at it sometimes, right?

I’m honored to become a part of the DOC (diabetes online community), and I can’t wait to get started! To round out this post, I’d like to thank some people (actually, this will cover pretty much everyone in my life.)

-My family: without them, I certainly wouldn’t be the person , or diabetic, I am today. Fourteen years ago, they found out that all of our lives would change, and since then, we’ve all become masters of carb counting and dealing with the insurance company.

-My friends: in elementary school, they’d walk me to the nurse’s office and guess my blood sugar, and today they always remember to buy diet soda when we hang out, and have occasionally had to buy me food when I’m low.

-My co-workers: I was VERY anxious about dealing with my diabetes at work when I first started my job at a local department store last summer, to the point where I would avoid checking my blood sugar during my shift as much as possible. But everyone has been INCREDIBLY accepting and accommodating, and I know I’m very lucky to work with them. To all the people who have had to take their breaks late when I’m low and need to go first- thank you!!

-My fellow CDN student leaders, and the CDN national staff- you all rock! Never have I felt more at home with a group of people than I did at the retreat in May. Keep doing what you’re doing, because so many people appreciate it. You all touch lives every day!

I think that’s everyone! I intend to post fairly frequently over the next couple of weeks, so stay tuned and thank you for reading!