Do you ever just sometimes like....not bolus for something? Like a really tiny, but still very sugary snack? Like say...a couple of Girl Scout cookies? And kind of cross your fingers and think well maybe....just maybe....I can sneak this in WITHOUT the trouble of whipping out my kit and beep-beep-booping all that nonsense in?
And then do you even kind of get away with it for like 20 minutes while your Dexcom arrow stays like --> and you think wow! Maybe this time...
And then an hour later, when you're at 217 you think to yourself sarcastically...wow. Maybe this time, what?
In the days around the deliciousness known as Valentine's Weekend 2015, we were lucky enough to have a slew of fun visitors and activities to fill our time.
Being teachers, we were also lucky enough to have a slew of chocolate filling our bags, piling out onto the bedroom floor, and just generally hovering temptingly in all directions. (Side note: I quickly googled whether or not it was a "slough of" or "slew of"...do the google for yourself and then imagine a slough of chocolate...DREAM COME TRUE!!)
For all the days when I eat the same exact breakfast, roughly the same lunch, do the same work routine, and keep myself "easily" in-range (until dinnertime at least...damn you dinnertime and my utter lack of ability to accurately pre-bolus/carb-count you), there are times when I convince myself that the big D is in fact, no big D.
And then.
Then there are humbling days like the weekend I just had, where my average estimated A1C on NightScout jumps 1% in just a week. I forced myself to do a data dump today to check out the new Dexcom Portait on the Web and compare it to NightScout, and well, the results were a bit unpleasant to say the least.
Not as unpleasant as the sluggish, dazed, stomach-twisting, elevator-whizzing-up-too-fast feeling that I suffered through a few too many times this weekend though.
It's almost like when they tell you that junk food is bad for you....they literally mean because it's like really bad for you...
Having the Dexcom often feels like this awesome sensation of a window being cut into my body for me to look through and observe my systems working. (Note: NOT LIKE THIS COW WITH A HOLE CUT INTO ITS SIDE: https://www.youtube.com/watch?v=dY4QkhwQMRA THAT IS GROSS. THIS IS METAPHORICAL) It's fascinating and addicting to connect the dots between "bad" food, "good" food, energy levels, and my blood sugars. So when I see how french fry and brie-and-baguette dinners affect me on all these levels, it's a potent lesson for next time I'm making these choices.
There are still some things I'm pretty powerless against though...like this dang 2 lb box of See's Dark Chocolate Truffles that's sitting on my bed right now.
Well, Rome wasn't built in a day...and I suspect my dream A1C of 4% won't be either...
I am an educator with diabetes. As such, I also fill the role of diabetes educator in my day to day interactions. It's strange to feel that I'm regarded as an expert in something that still feels so strange and unknowable to me, but my students ask me questions about diabetes as wholeheartedly as they ask me about long division. As hard as we work to cultivate the attitude that we are all working together in the classroom, that the teacher is not in charge of learning, there are certain realities to the situation. They are so young that I am still their mystic, their guide through the murky waters of all matters first grade and beyond. And diabetes is part of that beyond. So we have discussions about when and if it's okay to touch my Omnipod, especially when it's tantalizingly placed on my upper arm. We talk about sugar as medicine, about the idea of a disease lasting forever. We talk about who can get diabetes, how you know if someone has it. We go through metaphor after metaphor, discuss drug trials and Google images of beta cells.
We also, more key I think, discuss how to talk about these things. It's here that I struggle the most, because I am still grappling in my life about what makes me feel good and bad in relation to diabetes. We don't say sugar (or anything) is bad for YOU in our class anymore. We have substituted sayings like, it's not healthy for ME to have too much sugar because telling others about themselves feels bad at any age. We talk about the phrase "you don't look sick" makes people feel. How growing hysterical over other people's news takes the focus away from them and doesn't help. And so much more. Constantly. It's exhausting, and I often feel like I've flubbed, or gotten cut off, but that's life in the classroom. So after every discussion I try to make a mental note and, like any part of my curriculum, I know that I'll improve it next time.
Tonight, to celebrate the end of a long workweek and enjoy the stormy weather, BF and I decided to make the meal of the Gods, AKA Brinner. A tradition in many families, breakfast-for-dinner is a divine idea best described in the title quote of this entry by Turk from Scrubs (holla at a fellow diabetic!).
Yes...yes he is. And so am I!!
Source: http://www.dvdizzy.com/images/q-s/scrubs7-03.jpg
In the nature of all things Internet-worthy though, things didn't quite go so smoothly...
In a small effort to be healthy, lower carb, and less double arrows pointing straight up for me, we attempted to make some delicious, low-carb, high-protein, banana and almond flour waffles. Specifically, these ones here: http://foodbabe.com/2013/03/01/banana-nut-waffles/ . Don't click on the link yet, we're going to play a little game...
Here are two images of this recipe, side by side. Guess which one is ours, and which one is Food Babe's:
If you guessed this one...you're right!
Let me tell you something though. These waffles were survivors. They might have been doctored up with some extra almond flour/water to compensate for not enough bananas, they might have gotten dumped in the wet/dirty sink as they were being scraped out of the waffle iron, they might have been slightly burnt and crumbled from being scraped out of the iron...but they actually still tasted pretty darn good. Certainly better than the burnt and oily hash browns and the cold fried eggs.
Imagine what they could have been with a little more TLC...maybe I will have the BF make them again and I'll post a little follow up!!
The bright side is, we spent the evening laughing hysterically, remembering this and other epic fails on both our parts...like the time I nearly started a grease fire trying to casually wash a scorched pan...or the time he moved all the furniture in our room only to find his wallet sitting on the shelf where it normally was...under a pile of papers...
It soon moved on to reminiscing about stupid fights we've had. Anyone else ever fought about taking turns on Bejeweled before?!?!
*Crickets, crickets*
Maybe I should be embarrassed...well I guess it's a good thing there's no audience to really be embarrassed in front of :)
Last Monday was the glorious phenomenon known as a day off from work! Obviously the post-holiday season blues hit everyone pretty hard, but luckily there's good old MLK Jr., there to save the day and give everyone a bit of a respite.
On this day, and every day, it's hard not to feel my privilege when dealing with this disease (I tell you what though, I am NOT privileged in my spelling of this word because the flipping red dotted line comes up EVERY TIME! How am I so bad at this word?!).
Anyway, on a serious note. Of course a chronic disease is not what anyone wishes for. But after spending time in the ICU, looking at all the other folks in there with a full menu of health issues, being handed one like diabetes felt like a decent deal. Especially since, like every dutiful WebMD-er out there, I'd basically convinced myself that I had a variety of terminal diseases. One thing I have come to realize since my diagnosis, is that everyone seems to have their stuff. It's actually been really interesting, having diabetes as a sort of conversation starter, and getting in touch with a side of people I probably wouldn't have known about. Fairly often, seeing my Dexcom, or watching me check my blood sugar, or simply knowing me as a colleague with diabetes, people will open up to me about health issues or concerns they are dealing with, that I never would have known about. I feel like it enables me to emphasize on a whole new level, which, as a teacher, is really a kind of gift. A kind of gift.
That in and of itself comes tied to a certain privilege though. A big reason people are so sympathetic towards me, is that they look at my young, fit, society-approved body and immediately ask "Type 1?" And since I am, I say yes. I am privileged that my variety of the disease elicits immediate thoughts of "It's not your fault" and "Poor you" and "You're handling it so well." This is not the case for others with variations of diabetes, and I can't imagine the struggle it must be to have a disease, have to be dealing with both that AND people's inevitable assumptions and judgements about you.
I am privileged that I am literally walking around with two strange looking devices strapped to my body, along with boxes of juice, syringes, and needles, yet because I am also walking around in young, white, female, non-threatening skin, I make it through TSA with minimal hassle.
For the same reason as above, I am privileged to know that, should I even become hypoglycemic in a store, I would not think twice about the hassle involved in drinking a juice I hadn't paid for yet, or eating food straight off the shelves.
I am privileged that, while I do have my own health insurance and pay for all my own medical bills, should this ever not be possible I have a steady partner, immediate family, and extended family who could and would all help me pay my bills and get the best care available.
I am privileged that I was diagnosed after the ACA came into effect, and that I live in a state where it is held to some of the highest standards, leaving me confident that I will always have health insurance.
I am privileged that I grew up in an affluent household, where I learned how to advocate for myself, and that I deserve a high standard of care from my medical and insurance companies. I am privileged that I learned how to work the system, call high up contacts, and generally navigate these often convoluted systems.
There are more, always more, but it always helps to remind myself of these things. On a day when the beeping and buzzing of various devices wakes me up every 2 hours, or when the slightest whiff of carbohydrates sends my sugars skyrocketing, and my whole life feels totally out of control upside down, these positive thoughts can be the most important tool for diabetes management that I have.
"Hhrrrrrrrmmmmmphhhhh" she groans."I feel awful," she whispers hoarsely, each word a bristle of barbed wire forcing it's way out of her constricted throat. She shivers uncontrollably while she waits for the shower to heat up. She crouches down under the spray to give her aching muscles a rest and feels the gentle drumming of her headache swirl up and surround her.
She emerges much later, hair wet, no cleaner than before, wrapped in layers of clothing. She swaddles herself in blankets, leaves all the lights on for her boyfriend (it's 9 pm). She swallows her pills, packed with the promise of a glorious night's sleep and settles down to watch a movie and drift off gently.
But first, before she can drift, she swallows down a glass of juice and a fruit bar. She takes her Dexcom, sets the alerts to maximum volume, and hands it to him to put on his side of the bed. He takes her life in his hands and sets it down, assuming the responsibility, so she can have just. one. night. of rest.
Another post in such a short time...I guess my inner blogger is coming out a bit more now! Or perhaps I'm just feeling especially chatty...now that it's been a few months since my diagnosis, I feel like there has even been a few full days where I've managed to not have to share my diagnosis story/management techniques with ANYONE at all. Which is a really liberating feeling that I hadn't even noticed I was missing...
But apparently I want to talk about it more than I thought I did. Isn't that always the way? Also I am feeling inspired by the community online. I did a few halfhearted initial searches for blogs over the summer, but I mostly found parenting advice. Then last weekend, while googling "Dexcom CGM insertion does it hurt" (the answer is a big fat YES, imho), I found this blog: http://sixuntilme.com/wp/ and it's kind of sent me down a rabbit hole. In a lot of ways, it's been great to read about the experiences of fellow T1D-ers, especially since I've only found blogs of "lifers" aka people diagnosed as children. They are inspiring, offer great tips, and also commiserate over issues that were making me feel like a real fail-betic.
However, there's something they lack that I still have a lot of--and that's the SURPRISE. The dang novelty of HAVING A CHRONIC DISEASE. That's new to me, and right now, that's A LOT of the struggle.
I mentioned in my last post that the closest thing I could relate it to was a betrayal in a romantic relationship.
Cue my go-to breakup band:
Seriously. Try not to cry and lament over the last bad boy (or girl) (or non-gender normative person) who broke your heart.
As a healthy young adult, I have always been lucky enough to assume that things will "just get better." At worst they might require a quick trip to the GP for a prescription. This explains why I spent 4 months of my life peeing every 20 minutes, guzzling water from the tap in public restrooms (not an exaggeration), popping 3 Pepcid ACs with every meal, and sleeping for 12+ hours a day...without considering SEEKING MEDICAL ATTENTION.
As "they" say, you don't cook a frog by plopping him down in boiling water (presumably he will hop out). You put him in water and slowly turn the heat up and he will cook without even noticing.
So once my frog was thoroughly cooked, and I went into and came out of the hospital, there was no real depression for me, as this song might suggest. Instead, I was more like, "I'm aliiiiiiiive!!!!" I had SO MUCH ENERGY! I felt SO MUCH BETTER! I was SO HAPPY with my body, and my body was like SO HAPPY with me, since now I was helping my pancreas out and whatever.
We had some great times together, sleeping through the night, eating spicy foods, walking 2 blocks without dying of exhaustion. There were even times when I accidentally walked too far without noticing, past my destination, simply because I was walking that much faster now. It was great. It was basically the makeup sex after the fight.
But then. But then, the real work began. The cracks began to show. My body and I had made up, decided to stick together, started (insulin pump) therapy together. Things should have been great, right? Except one day I was running late to get a haircut, and so I had to push lunch until after the cut. No big deal right? As a freaking adult who pays taxes and occasionally doesn't get carded buying alcohol, shouldn't I be the one to decide when I push lunch if I want to? As the poor hairdresser whose hands filled up with drenched and clammy hair while I scrambled to suck down a juice box can attest--NOPE. That was a dumbbb idea and I was not in charge that day.
Nor was I in charge the many nights when I had to eat a massive snack 40 minutes after dinner due to a bad carb ratio/basal rate issue. Nor was I in charge when the word HIGH (no number, just those shameful letters) flashed on my PDM screen after a slight popcorn binge during "Guardians of the Galaxy." Nor do I feel in charge when I have to test my blood sugar before every long walk, before every yoga class, before every time I drive or am left alone with a child.
I don't feel in charge when I walk into a commercial building and instantly think--low blood sugar or A/C? Low blood sugar or genuine exertion? High blood sugar or just tired and distracted? It's like flying on a trapeze and there's a net at the bottom most of the time.
It doesn't help that I'm used to being an independent adult who barrels towards challenges. When I hop out of the car for a quick walk during a road trip, don't bring my kit for 10 minutes, and realize I'm dropping due to a breakfast over-bolus? NOT COOL BODY.
The list can (and does) go on. But I guess I should focus on the fact that we, my body and I, we're working on things. It lets me down sometimes, definitely. But having felt the true powerlessness of DKA, I can still appreciate that at least I can walk for 10 minutes at a time without panting. When I balance in standing half-moon pose, I try to breathe in and out thankfulness for the muscles in my thigh, calf, and core, that let me stand in this pose. When I walk home from work, with TSwift buzzing in my ears and my basal rate reduced, and make it all the way without even a snack break (okay so the snack break's not always mandatory...), I try to thank my body.
Have we (my body and I) ever had a "no hitter" day? No. Not yet. But we will, probably. Have I gone 2 full weeks without a low? Yes, and that's something I couldn't say a month ago, so. Have I completed a hike without dropping low OR overcompensating while reducing my basal insulin? As of very recently, yes. Has my body regained it's natural shape and size after I unknowingly starved it for months at a time? Yes.
Am I thankful for this diagnosis? Honestly, no. Definitely not. There's so much more to think about now, and worry about (blurry vision or EYE PROBLEMS? Cheap shoes or PENDING FOOT AMPUTATION?). But I think that taking the time to realize that it's not ALL struggles, all the time, is important. It's not even all diabetes, all the time. There's more going on between me and my body. There's more to us than meets the eye.
