The Bad-Thoughts Tornado

No one is happy, optimistic or confident 100% of the time. Doubt, anxiety, and negative emotions have a place in our lives- they help us fundamentally grow and change. I think of these kinds of thoughts as breezes: they shake things up a little, and sometimes you have to adjust to get back on track.

But sometimes, these thoughts don’t stop. They keep coming, and they spiral. A gentle breeze turns into a full-on tornado, and it can wipe out so many of the good thoughts you have about yourself very, very quickly.

“I’ll never pass this test” turns into “I’ll fail the class” and then “I’ll never get my dream job and spend the rest of my life bitter about not doing what I wanted to do.”

(That’s a pretty big leap from speculating about the outcome of one test, don’t you think?)

I take myself and the things I do pretty seriously. This serves me well when it comes to succeeding academically and accomplishing goals, but sometimes I think I’m a little too serious for my own good. Which means the tornado thing can escalate pretty easily.

Bad grade on a test? “I’ll never get into nursing school.” A friend gets a date? “I”ll be alone forever.” Misjudged the carb count on a new food? “I CAN LITERALLY NEVER EAT THIS AGAIN.”

Letting the tornado escalate can leave you looking at a barren wasteland where you once saw lots of good, positive things about yourself. But how do you stop the tornado?

Step back and take care of yourself, whether that’s through exercise, a Netflix binge, cuddling your dog, or buying yourself something you really want, even if it’s just coffee from your favorite cafe. Do something that makes you feel positively about yourself. I almost didn’t post this because I didn’t think it was any good (“am I a bad writer? Should I give up my blog?”). Instead of deleting the whole post, I closed my computer and had a mini dance party in my living room (I am a big proponent of this method to stress relief.). The few minutes I took for myself reminded me why I write- it’s therapeutic, and I like putting my thoughts out into the world.

So take some time to figure out what makes you feel happy and relaxed- going for a run, taking a hot shower, a cup of coffee and a movie, or vent sesh with your best friend. Anything you can do to stop the spiral of bad thoughts and make you feel better about your strengths and abilities is worth your time. Trust me.

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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.

Thanksgiving with a Side of Diabetes

Speaking as a regular person, I love the holidays. I love spending time with family, the lights, the music, the decorations- November and December are my favorite months of the year.

As a person with diabetes, I like the holidays a little less. I am extremely wary of any food that is starchy, fatty, or is something I have not prepared myself and don’t have nutrition info for. These kinds of foods are abundant during the holiday season, and it’s nearly impossible to keep blood sugars in a normal range while also eating what you want to. Thanksgiving can be especially stressful when trying to balance diabetes with celebrating the holiday like someone with a functioning pancreas. In my opinion, though, this is one of those days where it’s okay to let things slide a little bit! I think my control may have slid a little too much this past Thanksgiving though…

I started off the day around 180. Which quickly climbed to 260. I’m still trying to find the right basal pattern to combat the rise I see every morning after I wake up, but the added caffeine from my newfound love of coffee is making this a lot worse (I think a switch to decaf is in the cards). I ended up over compensating for the high (note to self: don’t correct 3 times in 2 hours) and had dropped to 46 by the time I arrived at my cousins’ house. So naturally I tore into the appetizers (and some orange juice) like my life depended on it- which it sort of did.

Unfortunately, I didn’t keep very close track of what I was eating, and didn’t remember that my blood sugar usually rises slowly after a low. By the time we ate, my blood sugar was in the low 100s but rising. Add in all the sugary/starchy side dishes and…you get the picture. Once the desserts were put out, I was steady at 300. Which meant no dessert for me! Thankfully after some aggressive correcting, I dropped to 120 and stayed there until the next morning. WIN!

So my blood sugar yo-yoed all day. It doesn’t happen every day, and neither does Thanksgiving. I spent a wonderful afternoon with my extended family, and didn’t obsess (too much) over my diabetes. I know there will be many instances during the next few weeks when I will have to decide whether to eat something REALLY yummy looking and have to deal with “the yo-yo” for the next twelve hours, or pass it up and play it safe. And it’s okay to choose the yo-yo sometimes! If that triple chocolate cake or apple pie is something you love and look forward to every year, and you’re prepared for your blood sugar to be a little wild, go for it! (Just don’t do it every day, but I think that goes without saying.)

For me, dessert is not worth the yo-yo- most of the time. I’m lucky, though, to have a mom who volunteers to bring a dessert for every holiday so that I’m not left out (trifle made with layers of brownie, cool whip, and bananas and strawberries. Blood sugar safe and delicious!). Thanks mom!

The moral of the story is, it’s okay to be okay with blood sugars that aren’t perfect sometimes, if it means you’re having fun and enjoying yourself. There’s no reason to stress yourself out over keeping your blood sugars in range on a holiday! Even if you’re trying to improve your A1C (like I am), one day isn’t going to undo your efforts. Enjoying your time with family and friends is much more valuable than stressing over your blood sugars.

And if you just so happen to end up with good blood sugars without trying? Then you, my friend, are a master, and I wish I had your skills.

 

Happy holidays!

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?

Diabetes Is, Part 2 (optimism)

Diabetes is being part of a community of diverse, creative and supportive people who all share one thing; non-functioning beta cells.

Diabetes is having friends all over the country, and getting to know people you never would have met without this diagnosis.

Diabetes is being able to give your workout 150% when your blood sugar is high, and you don’t have to worry as much about going low.

Diabetes is having spontaneous dance parties in your living room when your blood sugar is just a little high, and you want to get it down by getting down.

Diabetes is being a master at reading nutrition labels, and doing simple math in your head. It’s already knowing decimals and ratios when you start third grade math, and being ahead of the rest of the class. They know that stuff so that they can pass a test; you know that stuff so you can eat lunch.

Diabetes is developing amazing analytic and pattern-recognition skills. Picking out variables that affect a particular outcome (blood sugar) is second nature.

Diabetes is being fearless in the face of needles.

Diabetes is convincing people that your pump is a battery pack, and that you’re actually a robot.

Diabetes is having a ready-made excuse when you want to get out of doing something. “Sorry, I can’t help you bring in the groceries, my blood sugar’s low.”

Diabetes is doing whatever the heck you want to do, while also doing the job of one of your internal organs. (Not easy, but we’re pros.)

Diabetes is instantly making friends with strangers when you notice a pump or glucometer.

Diabetes is having the BEST stories. (“So this one time, when I was low, I almost ate a sponge…”)

Diabetes is spending so much time on hold with insurance companies, supply distributers and pharmacies that you’re convinced you could play their “hold” music from memory…despite not actually knowing how to play the piano.

Diabetes is probably having enough lancets stocked up in your supply cabinet (THAT cabinet) to last you a solid 5 years.

Diabetes is your roommate wondering why you keep your laundry detergent on top of the fridge, and explaining that it’s actually full of used needles, not soap…

Diabetes is when your friends and roommates keep your food preferences in mind when planning outings, or what to make for dinner. It’s when they start picking up and using your dialect of diabetes-lingo. It’s when they always remember to buy diet soda for you for parties.

Diabetes is an open door to a world of opportunities. It’s having a perfect college application essay topic. It’s having a standout reason for going into your field of choice. It’s being motivated to help others like you because you understand what they’re going through on a personal level.

Diabetes is knowing that if you can manage a chronic disease for most of your life, you can do ANYTHING.

Diabetes Is

I’ve been feeling a bit pessimistic (okay, REALLY pessimistic) about my diabetes lately, dealing with several days of consistent highs, and now consistent lows, so here’s my semi-poetic rant that’s also appropriate because it’s diabetes awareness month.

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Diabetes is NEVER sleeping through the night. My CGM is like a newborn child; it loudly wakes me up every two hours to scream for insulin or sugar, then forces me to stay up, making sure everything returns to normal.

Diabetes is having to stop your workout after 10 minutes because your blood sugar is falling fast- despite eating 50 carbs before you started.

Diabetes is learning how to deal with insurance companies at a much younger age than everyone else.

Diabetes is going into absolute panic mode if someone suggests eating out at someplace where you don’t know the menu. It’s ordering a salad because enjoying the dish you really want isn’t worth twelve hours of inconsistent blood sugars.

Diabetes is suddenly realizing that you prick your fingers and inject insulin many times EVERY DAY- with no immediate reward. Sure, good blood sugars are nice, but that’s nothing special. Non-diabetics have great blood sugars every day.

Diabetes is worrying that every time you tell someone “I have diabetes,” they’ll assume that you’re irresponsible or unhealthy, or (if it’s someone in an authority position) they won’t let you do what you need to do to take care of yourself.

Diabetes is never being able to go anywhere empty-handed, having to carry juice boxes as a childless adult, having to make sure you take everything you could possibly need- or else you could be stuck without insulin.

Diabetes is being forced to eat when you’e not hungry. It’s only drinking juice when you have NOTHING else to treat your low, because you’ve grown to hate it. It’s buying a bag of discount Halloween candy, and wanting to throw it all away two days later because the thought of eating any more sugar after a spate of lows makes you feel sick.

Diabetes is not being able to eat when you ARE hungry because your blood sugar is high and won’t come down.

Diabetes is knowing that no matter how hard things get, there are people around you who support everything you do. It’s knowing that what goes up must come down, and what goes down must come up. It’s knowing that every day is different, that your blood sugars will be better tomorrow. It’s knowing that the technology that keeps you alive will only continue to get better, and that one day, there will be a cure.

(But probably not in 5 years, like everyone always says.)

Stay tuned for a more optimistic “Diabetes Is, Part 2”!

On Losing My Security Blanket

Tonight, I’m sitting on the couch in my apartment, writing this blog post and listening to “Hello” by Adele (which is hauntingly beautiful, and somewhat appropriate for what I’m writing).

A year ago today, I was also sitting on a couch, back at home. I was clutching a pillow and watching “The Golden Girls.” And I would stay there until 3 am, finally choosing to eliminate all distractions, and try for some much-needed sleep.

I had just ended a relationship; gotten rid of my security blanket. I lost something that had been a constant in my life for two and a half years, something that carried me through the difficult transition to college. I lost many of the plans I had made for the future. I lost my sense of direction.

But on that night when I lost so much, I took something back, too- my sense of self.

The anxiety-and stress-riddled girl who barely left her room and HAD to be perfect at everything? That wasn’t me. “Me” is someone who gives everything her all and tries her best- and THAT is perfect for her. And above all, she takes care of herself. Perfectionism is way less important than happiness. The quiet girl who shied away from getting to know new people, and barely talked? That wasn’t me either. Nowadays, if I’ve got something to say, you bet I’ll say it! I also happen to think I can be pretty witty and funny at times. That was a side of me I didn’t even know existed a year ago.

Last year, I had plans for my future. Today, I still have plans- they’re just different. And a lot less rigid. (Seriously, what 20- year old knows exactly what they’re going to do with their life? No one.) I’ve learned how to live- to be open to new experiences, discover passions, give myself credit for my abilities, and make my life anything I want it to be.

A year ago, I lost my security blanket. I took back myself, and my future.

In the words of Adele ~

“Hello from the other side.”