Diabetes Diary

I have been using the Dexcom G5 continuous glucose monitor since May. A few weeks ago I got a notification that insurance has finally approved coverage of the Dexcom G6! The G6 requires even fewer finger sticks for calibration than the G5! I've heard that people on the G6 rarely if ever have to test with finger pricks.
The supplies for the G6 came today. My last sensor for the G5 expires tomorrow. I'm super anxious because the insertion method for the G6 is different than the G5 and I don't know how to do it. There are only 3 sensors in the box (each lasts 10 days instead of 7), and I am anxious and worried about wasting one by inserting it improperly.
I asked in a Facebook group how I should go about figuring this out. I thought maybe I should make an appointment with the diabetes educator, but who knows how long that would put me without a CGM? Someone in the Facebook group said she just called Dexcom and they walked her through it. I suppose I could do that, assuming I can get through to someone who can help on a Saturday. They probably have a 24-hour customer support line of some kind? Someone else pointed me to the FAQ section of Dexcom's website, and assured me that everything I need to know is in the Dexcom app and online. I probably should have read the materials that came with the G6 before asking online. I guess I'll figure it out in the morning.
A probably pointless post brought to you by my anxiety and over-thinking brain....

I am all set up and connected to a new insulin pump! I've had it for a couple weeks, and it's going okay so far. I've mastered bolusing (mealtime and correction doses of insulin). The menus are different, but I'm getting used to it. The thing that is still most challenging is changing out the insulin and reservoir. Most of the steps are on the pump screen, which is helpful, but drawing the insulin into the reservoir has more steps than I'm used to, and so far I always forget a few of them. I feel frustrated that I don't have it down yet, even though I know it will just take time to get used to. I forget to push a little insulin back into the tubing. I also have trouble filling the reservoir with the desired amount of insulin and forget how careful I have to be when removing the plunger from the bottom of the reservoir (something I didn't have to do with my last pump) in order to avoid air getting trapped in with the insulin. If air is trapped in with the insulin, I could be pumping air into my body instead of insulin and not know the difference until my blood sugars are high. I'm grateful I have my family to help these first few times and that my brother has a similar pump so he knows how to help.

I got a message on Tuesday that my Dexcom CGM is ready to ship! I'm still waiting on confirmation that it's shipped, but it's almost on its way! I'm excited for another new Diabetes adventure and am hopeful this will help me sleep and feel like I have better control and less anxiety. I scheduled an appointment to meet with the diabetes educator for June 4, but they called this morning and asked if I wanted to switch to May 29 instead. I'm a little concerned about switching because, though I want to get started as soon as possible, I'm not sure I'll have the Dexcom by Wednesday afternoon.

I was having more lows than normal after I switched to the new pump. My doctor looked at my blood sugars for the first week and changed some basal rates and insulin to carb ratios (how many grams of carbs equal a unit of insulin at various points throughout the day), and my blood sugars have been better. Sometimes I wonder why I have anxiety about what my blood sugars are doing because I feel like I'm in range most of the time and that I would see that if I looked at a log of my blood sugars.

I think I'm handling these changes better than I thought I would. My anxiety about switching to a new pump is gone, and soon I'll be able to operate and change it with the speed and accuracy of my last pump. Dexcom will be an adventure, but I think I'll be fine as long as I remind myself the benefits (theoretically) outweigh any headaches that might come with it.
Changes are happening, and for once I feel fine about it.

After fifteen years and two months with this disease, I'm feeling increased levels of anxiety about it. For most of my life with Type 1 I've been able to just take care of it, not complain, and not be bothered by some of the things that seem to worry other people with the disease. Until the last week...

The source of my anxiety boils down to one big thing, really. Animas, the maker of the insulin pump I've used for the last 13 years, has gone out of business. My warranty expires at the end of April, so I need to switch to a new pump. I've only ever used Animas and am worried another pump won't work as well or be as accessible. My current pump (and no pump to my knowledge) doesn't talk, but I can navigate it completely independently using magnification. It has the Audio Bolus feature in case I need to give myself an extra half unit of insulin for some reason. It fits in my pocket. I can change the site independently. It's been a great companion for so long, and I'm afraid to switch to something else. What if the new pump doesn't work as well? What if it makes me sicker, when I've worked so hard to stay healthy? What if none of the pump models work for me, and I have to go back to injections? I meet with my Diabetes Educator on Tuesday to discuss my options.

There are people in my life who are pressuring me to try a continuous glucose monitor (CGM). A CGM does just what the name implies: allows the user to see her blood sugars at any time, sometimes without needing to prick her finger. A CGM potentially means less finger pricks over all. I think there's usually a graph that shows how often blood sugars are in range throughout the day. It alarms if the user's blood sugar is dropping or going too high (some can automatically give insulin when it senses blood sugar going over a certain number). If you're reading this and wondering how I could be on the fence about trying a CGM, my reason for hesitating is simple. I don't like the idea of being constantly connected to another device or having a second thing stuck into my body all the time. I also slightly worry that if I could see what my blood sugar was at any given moment, I'd be constantly checking it, and that seems like something that could become unhealthy. Like the pump, I worry about trying a CGM from a blindness accessibility standpoint as well. That said, recently my anxiety about what my blood sugars are doing while I'm asleep has quickly gotten to an almost absurd level. If I treat a low before bed and go to bed with a blood sugar of 110, I worry that I over-corrected the low and that I'll wake up at 5 AM with a blood sugar of 400. If I know the carbs of what I eat before bed and bolus accordingly, I still worry I'll wake up with a low or high in the middle of the night. I know that some of this is irrational, and I don't understand what's causing it. It's been keeping me up the last few nights, which in turn negatively impacts my blood sugars and mood the next day. A CGM might help relieve some of this nighttime anxiety. If it persists, I'll bring it up with my doctor at our next appointment in a couple weeks. For now, I'm hoping it passes.

I've been experiencing a little Diabetes Burnout. Diabetes Burnout is another self-explanatory term, but basically it means a person with Diabetes doesn't take care of it anymore. It can manifest in several ways, including: checking blood sugar less frequently, not checking blood sugar at all, guessing at carbohydrates and insulin dosages, not giving insulin. This is probably not an exhaustive list. Diabetes burnout shouldn't be confused with having poor control. My understanding is that it occurs in people who have had good control and are just tired of dealing with Diabetes. It's more accurate to say I've been feeling premature Diabetes Burnout, because I'm still doing what I need to to take care of myself. But the other day, I was changing my pump site and thought, "I really don't want to do any of this anymore." I've even briefly considered going back on injections so I wouldn't have to be attached to anything. Then I remembered how much math goes with injections and how much extra supplies I'd have to carry around (an insulin pen and extra needles) and decided I'd still rather the pump. Diabetes is the full-time job that no one applies for or wants. Overnight, a person who's newly diagnosed becomes a mathematician, food expert, and external pancreas because her internal pancreas isn't working anymore. She has to keep it up for the rest of her life. When you consider that, burnout at some point is probably inevitable.

I've been feeling just how lonely Diabetes can make a person. I'm reaching out to online groups, but it's still an emotional time in my journey. Diabetes is a lonely and misunderstood disease. There's more to it than expensive insulin and tracking numbers. It obviously impacts a person's physical health, but it also affects their mental and emotional health. People with chronic illnesses are more likely to be depressed.

I've always written posts for this blog that I feel passionate about. It's necessary, for example, to talk about the ridiculous price of insulin, explain the difference between Type 1 and 2 Diabetes, or explain what insulin does. But I think it's equally important to honestly and openly share topics like the ones in this post.

Fifteen years ago today, my life changed forever. I still remember packing a bag to go to the hospital, the spunky nurse named Nikki who met us shortly after we walked into the hospital room, another nurse named Amanda who liked my pink pajamas with the butterflies on them and who always said hello any time she saw me after I was diagnosed, the fear and sadness that swirled around us. I cried on the phone with my grandparents, and the next day they sent flowers. Between my mom and I, we could have watered those flowers with our tears. My brother was diagnosed almost exactly a year earlier, so we knew what to expect, but we still mourned the moment I went from being a healthy teenager to having an invisible, incurable illness. Everyone with Diabetes knows you had a life before Type 1 and a different life after.
But this is not meant to be a sad post. Today is a day for celebrating!

Diabetes has taught me that I am stronger than I know. Even if I feel badly one day, the next day will likely be better. I am in tune to how my body feels; I can still feel my highs and lows, and I know how certain foods impact me. I know how to read a nutrition label, and I know what a majority of the label means. I like to think I am more thankful for food because I have to measure it, and I am very mindful of what I put into my body.

I am not alone in this journey. Through Facebook and Instagram, I'm always finding fellow people with Diabetes, fighting the same battle I am. Sometimes they remind me how lucky I am; sometimes it's just nice to know someone gets it.

It's been a long journey. Some days with this disease have been dark, like that time in college I was hospitalized because my blood sugars were too high and weren't coming down. No one ever said I was in DKA, but I might have been. Other days have been less dramatic but still annoying. These days, Diabetes and I seem to be getting along okay. My last A1C was 6.8, and I have no complications! I feel great! In a world where insulin prices are beyond astronomical and people are having to dangerously ration insulin or travel out of the country to afford this magic liquid that keeps them alive, I can still afford my supplies and insulin. I have a doctor I like and who listens to me if I have concerns.

I know I've said this here before, but it's true, and today is a good day to remember it. Diabetes makes me strong. I am a warrior. Diabetes makes me thankful. Here's to many more years of living healthily with Diabetes!

In a Facebook group for women with Type 1 I’m part of, I’ve seen posts asking how going through airport security works with devices like an insulin pump and continuous glucose monitor (CGM). I do not have a CGM, so I cannot speak to that, but I have traveled with an insulin pump several times.

How Do I Travel Through Security?

My glucose monitor can go through the x-ray machine with my other belongings in a bin. I usually don’t even take it out of my purse. I’ve put my insulin in the same bag as my other liquids. Sometimes the TSA agent will ask to see it, sometimes not. Once I’m through the security checkpoint, the insulin goes into an insulated bag with an ice pack so it stays cool.
Before walking through the security checkpoint, I make sure to tell the TSA agent I have an insulin pump. Pumps are not supposed to go through the x-ray machine. I’ve been taken to the side and given a full pat-down. Most often, I’ll go through the body scanner (okay for pumps), and the TSA agent will ask me to take out my pump, pat it with both hands, and then they’ll swab my hands for residue. That’s it! I’m on my way! I find this is a much easier, more efficient, and more comfortable process than being patted down. I make sure to wear clothing with pockets when I travel so I can easily and comfortably access my pump for this process.

Packing Tips

I always, always carry all of my Diabetes supplies with me in my carry-on luggage. Nothing would be worse than getting to my destination, discovering my luggage has been lost, and being without Diabetes supplies!
As mentioned above, I carry an insulated bag with an ice pack to keep my insulin cold. I often also have juice boxes in this bag for lows. Freo bags are designed specifically for insulin pens and viles of insulin to keep them cold for longer than an ice pack, but I find the ice pack works fine for what I need and have never felt the need to spend money on a Freo bag. I stuff my purse or other luggage with granola bars, glucose tablets, and other snacks to treat low blood sugar.
I pack a plastic resealable bag with insulin pump supplies, test strips, and alcohol swabs. This makes me feel more organized because all of my Diabetes supplies are in one place. I always pack one or two extra pump sites than I think I’ll need, just in case one malfunctions. It’s always better to have too many supplies than not enough!

Diabetes doesn’t make traveling easier, but it is doable.

Diabetes is not a doughnut.

It is sitting on your bedroom floor at 12:30 AM, eating a third granola bar, hoping your blood sugar will come up soon, hoping you can get some sleep before you have to be up for work in 6 hours.

Diabetes is not a candy bar.

It is looking at a candy bar and thinking, "This probably has at least 30 carbs in it. That's at least 2 units of insulin. How will eating this make me feel later? What's my blood sugar? Do I really want to bolus for this candy? Is it worth it?"

Diabetes is not a piece of pie.

It is a constant balancing act with constant math equations, blood sugar readings, insulin injections, and constantly monitoring how you're feeling.

Diabetes is not a cookie.

It is sitting on your bathroom floor at 4 AM, feeling like you might toss your cookies because your blood sugar is over 400.

Diabetes is not chocolate.

It is at least 5 finger pricks with a needle every day. It's insulin injections. It's thinking about everything you eat based primarily on carbohydrate content.

Diabetes is not a piece of cake.

It's making decisions every day, knowing that each decision you make is literally keeping you alive. You are keeping yourself alive every day!

Diabetes is not a doughnut.

Because Diabetes is not sweet, nor is it a joke.

The summer after I was diagnosed, I attended a week-long camp for people with Diabetes. There are many similar camps across the country for children (usually age 5-15), and there happened to be one at a camp near where we lived. Many children find Diabetes camp to be a life-changing, amazing experience. Or at least that’s what I hear. I, however, did not have that kind of experience.

The camp was owned by CampFire Boys and Girls. I happened to be part of a group of blind friends, and our group was under CampFire’s umbrella. So I’d often go on camping trips with the group at this camp. This made me familiar with the camp grounds, at least mildly.

Diabetes camp, for many children, is an opportunity to be with other children with Diabetes, maybe for the first time. You know all the carbs for every meal. You all take your insulin and test your blood sugars at the same time. This may have been a really cool thing to experience, if my brother and I weren’t doing it every day at home. I lived with someone else with Diabetes, so that aspect of camp didn’t really phase me. (Although, it was kind of cool to wake up and test my blood sugar with eight other girls in my cabin!)

We arrived on a Sunday afternoon, signed in, dropped our bags off in our cabins, and our parents left us with our counselor for the week. My brother was seven at the time, and I was fourteen, so we were in completely different groups and didn’t see much of each other the whole week. I was one of the first of my group to be left with the counselor. For a few minutes, it was just a blond-haired girl with Type 2 and I standing in the grass with our enthusiastic counselor. Once everyone else was there, we stood in a circle and introduced ourselves. I was, of course, the only person with a disability, and the blond girl was the only person with Type 2. I felt like this should maybe bond us somehow, but it didn’t.

That night, and for the entire week, the girls in my cabin walked beside me. They all seemed eager to help, to be my guide, to be my eyes. It was nice, but it also made me feel like I wasn’t equal.

I was walking with one of the girls from my cabin to breakfast one morning. “Do you like camp,” she asked.

“Yeah.”

I don’t think I sounded sure in my response, but she replied, “I do, too, because everyone’s the same.”

But I didn’t feel the same. No one else was walking around with a white cane and walking around holding onto someone’s arm. Everyone else was able to participate in the baseball game, the small group dance lead by a camp staff member, the art project, and other camp activities. It wasn’t that I was excluded completely from all of these activities, but they weren’t very accessible to me. I remember sitting on the sidelines with a counselor at the baseball game. During the group dance, we all stood in two lines facing the person leading the dance steps. I tried to follow by watching the person next to me, but I was always at least one step behind. I bit down on the straw of my water bottle and tried not to cry.

I wish I could say that Diabetes camp changed my life. I wish I could say I made life-long friends there. But neither of those things happened. Here are a couple other things that did happen:

• The girl with Type 2 fell off the giant tire swing on the ropes course and hit her head. She had to be hospitalized and missed camp for the rest of the week. We all signed a get well card for her.

• There was a dance at the end of the week, and there was a boy who wanted to dance with me. I say he was a boy, but he was about my age. Some of the girls in my cabin encouraged me to dance with him, so I did. He was bigger and taller than I was, and very sweaty. I felt awkward dancing with him, but it was nice that he wanted to dance with me.

• On the last night of camp, we had a bonfire. Several people had sticks that they’d put in the fire and shared a memory from camp or dedicated their stick to someone. One girl from my cabin said her stick was for me, for my bravery. I was flattered by this, but in some ways it was just one more thing that made me stand out. But it was sweet that she thought of me.

• Friday afternoon we took a bus trip to a baseball stadium in the city limits. I stood outside, my nostrils filling with the diesel fuel from the buses, waiting for everyone to get organized and for someone to tell me where to be. "What's that?" The question came from a girl in a striped shirt and ponytail who had appeared beside me. She couldn’t have been more than nine or ten. It took a minute for me to realize what she was asking about. I explained that the cane helps me see. She sounded amazed when she said, “Wow, so you’re blind and you have Diabetes?” Yes. Aren’t I lucky?

• I argued with the counselor in my cabin one morning.
Me: I’m low. I need to eat.
Counselor: You’re only 83. You’re not really low. We’re going to eat breakfast in a few minutes.
Me: But I feel low!
Counselor: Just wait a few minutes. You’ll feel better after breakfast.

• One evening we had carnival games and food, including popcorn and cotton candy. Consequently, everyone had high blood sugars.

I am not saying that Diabetes camp was the worst experience of my life. But I think I came to it from a different perspective than other campers did. I left wanting to have gotten more out of it than I did, wanting to be changed but really just staying the same. I hope this post does not come across as discouraging others to go to camp. I think my experience is rare—that most campers truly find camp to be a life-changing, positive experience. I hope so!

I’m changing my insulin pump site. I pull the plastic tab from around the new infusion set , peel away the paper on the bottom, and pop the lid off. I rip open the package containing the cartridge components—the needle, cartridge that holds the insulin, and blue plunger to help pull the insulin from the bottle into the cartridge. I remove the old empty cartridge from the pump and add it to the pile for trash before I replace it with a full one. I prime the tubing and remove the paper coil covering the adhesive and the thin blue shield from over the needle. I rip open an alcohol swab and use it to clean the area of skin where I’ll insert the new site. I pull back on the bottom of the infusion set to cock the needle. I place it against the clean skin, pinch the sides towards each other, and THUNK, just like that, the new site is in me. I pull the infusion set away, revealing the needle still attached to the set. I push the lid down over the top to cover the needle. I pull out the old site, the one that’s been in my body for three days, and hope I don’t draw blood. That would involve alcohol swabs and tissues to stop the bleeding. I look down at the counter at the small pile of trash I’ve created.

When I stop to think about it, the Diabetes supplies I use every day create a lot of waste:

• At least 4 test strips per day, which cannot be reused
• A new cartridge for insulin and a new infusion set every three days when I change my pump site, both of which have their own disposable packaging
• Alcohol swabs to clean off my finger before testing or my skin before inserting the pump site
• Empty bottles of insulin, and the boxes they come in (two a month)
• The boxes test strip containers come in, as well as the containers themselves (three or four boxes a month, each with two plastic containers)
• The single AA battery in my insulin pump
• The small round battery in my glucometer
• The box with plastic packing material inside that my pump supplies come in wen they’re delivered to my door
• The large plastic bag my pump supplies come in if I pick them up from the pharmacy instead of having them delivered
• The boxes my infusion sets and cartridges come in (one box of each per month)

I could argue that when I was on MDI there was less waste. But maybe there wasn't. There were still all those test strips. There were still at least four needles a day, tossed into a sharps container that would be thrown away when it was full. There were empty insulin bottles and pens. There was a new alcohol swab for every shot.

As a person who wants to do more to help the planet, all that waste bothers me. But I need these things to stay alive and healthy. I can’t stop changing my insulin pump or testing my blood sugar just to reduce the amount of trash I produce. I will never be one of those people who produce little to no waste, but it’s not impossible to help the environment while taking care of my daily Diabetes needs. I can recycle the boxes pump supplies come in and the paper backing on the infusion sets and packages that hold the cartridge components. I can wash my hands instead of using alcohol swabs before I test my blood sugar. I can do other things, not related to Diabetes, to try to lessen my impact on the earth’s environment—eat less meat, recycle, refuse plastic bags when I only buy a few things at the store, try conserving water.

The next time I change my pump, I will sigh at the pile of trash. Then I’ll recycle what I can and remind myself that recycling some of it is better than recycling none of it. I may not be able to completely eliminate the amount of trash I create, but I can try to reduce it.

Imagine, you’re warm and snug in bed, almost asleep, when you realize something feels off. You feel a little dizzy and wonder if it’s because you’re so close to sleep. It’s tempting to ignore it, but you feel a little shaky too, so you force yourself to peel off the covers and crawl out of the warm cocoon of bedding. You walk to the bathroom in the dark on trembling legs. You blink against the light as you wash your shaking hands and perform the automatic action of testing your blood sugar. It takes five seconds to count down until you see the result. 68.
The rule for low blood sugar is to test and eat fifteen grams of carbohydrates, then wait fifteen minutes and test again. Even when it’s midnight and I’m tired, I still (mostly) subscribe to this rule. I took the testing supplies back to the bedroom and turned on a lamp so the light could keep me awake. I ate a granola bar and sat up with a book. I tested again and it’s still low. So I ate two more granola bars because I didn’t want to be up for forty-five minutes in total. Fifteen minutes later, testing for the third time in under an hour, it’s gone up. Cool. I can go to sleep.
But the next night, the first time I checked my blood sugar was 71. It’s not that low, so I ate a granola bar, waited, and tested again. I had to keep testing and waiting until after 1 AM. Diabetes interrupts your sleep when you’re low, and sometimes when you’re blood sugar’s high.

A few days later, I had dinner with family and ate a little differently than normal. Before dinner, my blood sugar was 246. A little high, but not awful. After dinner, I was 406. I felt tired, irritable, and dehydrated. When my blood sugar is that high, I ask myself the following:

• What did I eat? Was I sure of the carb count?
• Did I give myself insulin for my last meal?
• When was the last time I changed my pump site?
• Did I disconnect my pump for any amount of time for any reason?
• Was I exercising?

I wasn’t sure of how many carbs I’d eaten, so I couldn’t have been positive I was getting the right amount of insulin. I’d changed my pump the night before, and my numbers had been fine earlier that day, so I didn’t think it was the cause of a faulty pump site. I could rule out the last two questions.
Sometimes why my blood sugar is what it is can be a mystery. I corrected for the high and waited an hour to test again. It was still 416, so I corrected again and went to bed. I felt sick curled up under blankets. I woke a few times during the night, still feeling like I was probably over 300. When I tested again in the morning, my blood sugar was 340.

There are physical signs on my body from thirteen years of Diabetes—the calluses on my fingers, and an indentation on my stomach and scar tissue from so many years of pump site changes. Other people with Diabetes may have other signs from battling this disease daily or from complications. But Diabetes can take more out of a person physically than just what can be seen. The fluctuation in blood sugar levels over the course of four days took a lot out of me physically, as did the lack of a solid night’s sleep for three out of four nights. So much so that I took a good portion of that Sunday to just sleep and rest.

It’s important to have control of my Diabetes, but no one can have perfect control all the time. That’s okay. I’m learning to pay closer attention to fluctuation in blood sugars, figure out what causes them if I can, and take things one day at a time.

Counting carbohydrates is a crutial part of my Diabetes management. I’ve talked frequently in previous posts about carb counting and its effect on insulin and blood sugars. But how exactly do I count carbs?

Reading a Nutrition Label

Almost all packaged foods come with a nutritional facts label printed on the packaging. In order to find out how many carbs are in a slice of bread, for example, look at the nutrition label. At the top, right under “Nutrition Facts” are listed the serving size and number of servings per container. Look at the serving size. For a piece of bread, the serving size is usually one slice. Sometimes there is a gram listing after the serving size, but when counting carbs for Diabetes, you can ignore that number.
Move down the label until you see “Total Carbohydrate” in bold. This is usually listed between Sodium and Protein. The number of grams listed after “Total Carbohydrate” is the number of carbs in one serving of whatever you’re eating. For a slice of bread, the number is usually about 15 grams. The percentage listed after the grams is the percent daily value and can be ignored.
Sometimes, the serving size will be listed as something weird and completely unhelpful, like 6 ounces of dry pasta. In such cases, just make your best estimate.

Can I still Eat Something if it Doesn’t Have a Label?

Yes. This is where guessing carb content comes in. Sometimes you can estimate by comparing a homemade item, like a cookie, with a similarly-sized store-bought packaged item. Sometimes you can guess based on what you already know. I know, for example, a small apple is 15 grams of carb. If I have a larger apple, I’ll count 20 or 25, depending on the size. An average-sized banana has 30 grams of carb, but if I have a larger one, I’ll count 40. A cup of potatoes or pasta is usually about 30 grams. I’ve gotten good when I have to guess, but if I guess wrong, I just give more insulin or eat more carbs later to normalize my blood sugar. Making wild guesses all the time is not recommended, as it might lead to constantly abnormal blood sugars, but it is sometimes necessary.

A Note on Restaurants

Restaurant menus don’t have a section at the back of the menu with nutrition facts for every dish. They do, however, often have nutrition facts listed online. There are also apps that give carb count for many items at popular restaurants.