Constant Vigilance, or, Being Tethered

I’ve spent the past week or so fighting with some darned persistent high blood sugars. Waking up to the jarring vibration of my Dexcom has become almost ritualistic: 1am, after over treating for that low before bed; 3am, when I’m still 260; 5am, when the second correction bolus only brought me to 230; and 7am, when all the insulin from the night decides to kick in at once and I need a juice box. And the juice box, coupled with the dawn phenomenon, will send me soaring again, so there’s another alarm by 8:30.

I don’t wake up in the morning feeling well rested, needless to say. I’m awake and alert when my Dexcom goes off in the middle of the night; because I HAVE to be. Being groggy while trying to treat a low/high can lead to some questionable decisions (see: eating the entire kitchen when your blood sugar is actually 90).

These highs have left me feeling sick- so sick I don’t even want to touch the water my body needs to replenish. I can barely drag myself out of bed; if I have someplace to be first thing in the morning, it’s a struggle to get going.

This image has stuck in my head for quite a while, and this finally seems like the post to use it in.

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THIS sums up how diabetes can feel sometimes: like being imprisoned, knowing what you could be doing or how you could be feeling without a disease that requires your brain to do the job of your pancreas. The brain does a lot of wonderful things, but it just wasn’t meant to calculate insulin doses that account for EVERY possible blood sugar-affecting variable. Even with all of the devices we have, we are imperfect at best.

This image speaks of being tethered. We are tethered (in a mostly literal sense) to our meters, our pumps, our CGMs, in the name of- I can’t think of a better way to say it, so thanks Mad-Eye Moody- CONSTANT VIGILANCE. We can’t leave the house without a meter, we can’t be more than 20 feet away from a CGM, and we are very literally attached to our pumps- you can’t go anywhere without a visual reminder of diabetes. Even to sleep. I’m very thankful for my Dexcom at night, but sometimes I feel overloaded and overwhelmed with the reminders that for all my vigilance, sometimes things still don’t go my way.

This image speaks to the fact that as much as we may not like it sometimes, this is our reality- being constantly surrounded by medical devices, waking up every night, intensely planning our days around diabetes. But research is bringing us closer to an un-tethered experience of having diabetes; therapies to regrow and preserve insulin-producing cells are being created and tested, and are showing a lot of promise.

One day, we may not be tethered anymore. And what a day that will be.

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Blame Game

Most people think of diabetes as a very physical disease, but there is a huge mental and emotional component to its management.

As I’ve said before, diabetes is one of those things where you can do everything right, and still not end up where you want to be. Super frustrating- like throw-your-pump-against-a-wall frustrating. Not that I’m suggesting that’s a good idea, because pumps are mega expensive, and you should never intentionally damage your pseudo-pancreas. But the sentiment is the same.

The other night, I went out for dinner with my roommate and her family for her birthday. It was fun, and we had some good food! I knew there was a possibility that my blood sugar could be affected during the night while I slept, but I did the best I could in calculating my insulin dose.

My CGM probably woke me up about 5 times during the night as I dipped below and rose about my “high alert” threshold, then started rising more dramatically. This resulted in several correction boluses and tests on my meter that kept me up for a fair part of the night. As I climbed out of bed feeling zombie-like and dehydrated, I found myself thinking,

“I shouldn’t have…”

Shouldn’t have celebrated my friend’s birthday the way anyone else would have? Shouldn’t have eaten the part of my dinner that I knew might give me trouble later? Shouldn’t have assumed that one correction bolus (with a little extra for good measure) would be enough to bring my blood sugar down to a level that wouldn’t make me feel sick in the morning?

The reality is, I had done everything I possibly could to both enjoy my friend’s birthday and keep my blood sugar under control. I regularly put 150% into my diabetes management, but often don’t see the results I’d like.

In a more extreme example, last fall, my blood sugars were very high (high 200s-low 300s) the vast majority of the time for a few weeks, despite massive correction boluses, basal and carb ratio changes. The fact that I was having trouble putting in pump sites where the insulin would absorb well was not helping. I felt sick and dehydrated and upset with my pump all the time, and one night during class, I developed blurry spots in my vision.

I was absolutely terrified. I could barely form coherent sentences when I called my mom. Had I damaged my vision by not taking proper care of myself?

Luckily, the endocrinologist on call at my doctor’s office assured me that it was likely a temporary fluid imbalance in my eyes, caused by my frequent high blood sugars. And sure enough, my vision returned to normal shortly afterwards. But I still blamed myself for this scary incident- even though I was doing my best to take care of myself in a difficult situation.

All anyone can expect from you in managing your diabetes is your best effort. After all, you didn’t ask for your body to attack your pancreas. Your best IS good enough. Don’t let anyone tell you it isn’t. Don’t feel bad if everything isn’t perfect all the time- what would you have to sacrifice to get the control you want? I think it’s better to live your life freely, have fun, and enjoy your experiences, instead of constantly worrying about keeping your blood sugar in range.

In case anyone was wondering, my eyes suffered no lasting damage from that incident, and I have a much better relationship with my pump at this point in time. I’m still working on not blaming myself when my blood sugars are out of range- but what goes up must come down, right?

This Is Not a Cell Phone

Let me start off by saying that you should never have to justify anything about your diabetes to anyone.

Except if that person is a college professor, whose exam you’re trying not to get kicked out of.

I started on my CGM last March, and because most of my classes did not have exams last semester, I wasn’t too concerned about the receiver going off at a time when it shouldn’t. My first exam of the fall semester however, took place yesterday, in a class with a professor who is VERY strict about cell phone noise during exams. If your phone goes off, you are kicked out of the exam with a zero. And did I mention how all belongings have to stay at the front of the auditorium where the exam is being held? Panic time! I have no problem with shutting my phone off before the exam, but as a diabetic, I’m equipped with two devices that look, and can make noise, like cell phones. And they can’t leave my side. Literally. One is stuck on my skin, and the other is connected by a 20-inch tube that ends inside my body.

So I did what any proactive person would do, and sought out my professor after class to explain my situation. She was very understanding, and, long story short, if my CGM goes off, or I need a juice box during the exam, I won’t be kicked out. I was TREMENDOUSLY relieved; it’s always a toss-up when you have to explain diabetes to others, whether they will be accommodating or inflexible. We shouldn’t have to justify what we need to do to STAY ALIVE to anyone (because by law, we’re allowed to), but sometimes it’s unfortunately necessary.

This situation, along with leading my first College Diabetes Network chapter meeting of the year, and a conversation with a friend, really got me thinking about the subject of diabetes as a disability. We all experience diabetes very differently, and anyone who identifies it as a disability is totally right. Diabetes makes it really difficult to do things, like going out to eat, exercising, or even getting on a plane, that pose no issues for people with functioning pancreases.

I, personally, do not identify as having a disability. I see diabetes simply as an extra set of challenges for myself. It doesn’t prevent me from doing anything; I just have a few more hoops to jump through to get where I want to be. I’ve balked at the idea of registering with Disability Services on campus for this reason, even though I know that they can provide valuable support if there is ever a problem.

Even when diabetes has the potential to get in the way of my daily routine, I do everything in my power not to let it. Last summer, my pump site failed and my blood sugar went up to 590 (note to self: never change a site before a froyo run). I was up until 3 in the morning bringing it down (shout out to the on-call endo at my practice who calmly helped me out as I did my best to not be a sobbing 20 year old diabetes-veteran). I was dehydrated and exhausted, and had to be at work for 8 am the next morning. I toyed with the idea of calling out- but at that point in my life, I was starting to feel like diabetes was consuming a lot of my energy. So I got a few hours of sleep, loaded up on water, and showed up on time for work the next morning.

And crashed when I came home- but who wouldn’t, after working on 4 hours of sleep?

Diabetes is just something that makes me, me. Without it, I wouldn’t be a leader, I probably wouldn’t be as responsible or healthy, and I certainly wouldn’t be on the path to becoming a nurse. I’ve let it define me in the best way possible. I’ve embraced the lifestyle changes I make because of it, and taken advantage of the opportunities it’s presented me with. To me, diabetes has enabled me more than disabled me.

Explaining your juice boxes, or insulin pump, or CGM is just the unfortunate reality of living with diabetes- but explaining your devices should never prevent you from doing something you want or need to do. When I spoke to my professor about my pump and CGM, I chose to say “I’ve got these medical devices that might make noise during the exam, would you rather me sit up front?” rather than ask whether it was okay for me to have my devices. Because it is totally okay for me to have my devices. They were not preventing me from taking the exam the way everyone else takes it. They just had the potential to noisily inform me of my blood sugar levels, instead of incoming calls or texts.

I’m happy to report that my exam went off without a hitch; I think I scored very well, and there were no alarms from my CGM or pump. I did hit my high blood sugar alert level (200 mg/dL) before the exam started, and stayed over 200 for the duration of the test- but better high than low, right?