entering the abyss…

you would think that, 100 years after the discovery of man-made and injectable insulin, that we would have figured diabetes out by now.

and the funny thing is, most doctors and diabetes educators would like you to think they’ve got it all figured out. ‘oh yeah, just shoot this up, take this pill, eat right, and exercise… you’ll be just fine.’

i’m gonna go ahead and give that one a big fat N O P E.

people think that i began to cut out carbs from my diet and eat little sugar as soon as i was diagnosed. but it’s actually quite the opposite. with the ability to consume fruits and whole grains more frequently, i honestly think that i may have eaten healthier before i was diagnosed with diabetes. it just so happens that ‘low carb’ is the trendy diet of the moment, so people seem to assume that it is the healthiest.

well, although i don’t know much, i can tell you that this is definitely not the case. OUR BRAINS FUNCTION ON CARBS, PEOPLE. i’m not saying go eat 50 cookies to ‘fuel your brain,’ (i mean, or do… do you!), just that cutting out carbs is not a sustainable way to eat/ live.

just take it from me. as soon as i was diagnosed, i began eating as little carbs as possible, because that meant that i didn’t have to take as much insulin. so it would seem that i was getting by with ‘controlled’ glucose levels. however, i now know that this is because i was still in the ‘honeymoon’ phase of my diabetes life cycle (?). this means that my pancreas was still producing a little bit of insulin, and i could eat my protein-and-veggie diet without having to bolus (inject short-acting insulin) often.

however, more recently, this began to change. i could no longer go past noon without taking a few units of insulin with my meals, even though if i calculated all of the carbs i was eating, it would only come out to around 5-10. and this is being super careful, even counting the carbohydrates of the veggies i was eating, like carrots.

at first, this seemed to work. my numbers were getting a little bit more in control.

but THEN, another issue came up. i would bolus for all of my protein filled meals and snacks, but i was still going high all of the time. i talked to a few diabetics and diabetes educators, and they suggested that i eat some more carbohydrates to fuel my brain, because it was possible that my liver was converting the protein and fat in my diet into glucose, which was in turn raising my blood sugar.

so i tried that, too. and for a while, that began to work.

but THEN, my numbers were out of control again. i consulted doctors, nurses, fellow dia-badasses, and diabetes educators alike. one person suggested that i stop eating carbs, the other that i stop eating so much protein, and even one more advised that i stop doing yoga (you’ve got to be kidding me…). a friend in my public health program mentioned that i may not have type one diabetes at all, but perhaps type 1.5, also known as latent autoimmune diabetes in adults (LADA). still pretty shitty control of my blood sugars.

so what to do now? i consulted one of the best endocrinologists in the country at the university of chicago, and he had no answer for me. i visited the office of a ‘world renowned’ endo at emory, and he told me to go see his diabetes educator. so i sighed, frustrated, but determined to figure this whole thing out once and for all.

i walked into the diabetes educator’s office last week, not happy about having to skip class but grateful for getting squeezed in for an appointment. not for long though. we began to go through all of the usual question and answer interrogation that i can pretty much answer in my sleep now: what do you eat for breakfast? lunch? dinner? what is your insulin-to-carb ratio? do you exercise? what is your insulin correction factor?

as we tried to work this out, i began to get more frustrated and the diabetes educator began to shift uncomfortably in her seat. after about 30 minutes of getting virtually nowhere while i looked down at my thumbs, i heard the educator begin to sniffle. i finally made eye contact with her, and noticed that tears were streaming down her face.

‘i just don’t know what to tell you,’ she blurted out. ‘i’m so sorry.’

tears continued to flow as my own face contorted into a weird expression that i am guessing looked like a cross between sympathy and utter disbelief.

‘umm. i think i’m going to sit in the waiting room for my next appointment.’ i awkwardly declared as i gathered my things and walked right past the educator, the clerk at the checkout, the waiting room, and out the door to my car.

i guess the point of this drawn out story is that WE LITERALLY KNOW NOTHING ABOUT DIABETES. i can be the picture of good nutrition, fitness, and overall health, yet on the inside my liver is dumping glucose into my bloodstream and my pancreas is crying for some relief. if the best endocrinologists in the country don’t have an answer for me, what am i supposed to do?

well, yesterday i was having another one of those crazy blood sugar days where, from the moment i wake up, through all of my classes and a day of stress, my glucose level is over 300. for those who don’t know, that is REALLY. BAD. i took plenty of walks, changed my pump, changed my vial of insulin, and took syringe injections, all the while trying to finish a grant proposal, complete a data-entry assignment, and keep myself from having a bonafide panic attack.

at around 6 pm, i was at a coffee shop near my apartment when my roommate asked me if i wanted to grab dinner with her. i groaned at the prospect of eating and messing up my blood sugar even more, but i figured i needed a break, so i agreed. i packed up my computer and belongings and headed home.

right when i got home, i looked at my glucose monitor to check the reading, expecting to see a steady number around 300. to my surprise, i was now 170 with two arrows going straight down, meaning that i was plummeting… and fast.

okay. what the actual FUCK. i had been trying all day in every way to lower my numbers, but as soon as i get home and stop working, i am headed back to normal.

i was fine all evening, because i decided to stop working. but the next day, as i headed off on my commute to school, my numbers began to skyrocket again.

this really got me to thinking… why does no one talk about mental health in diabetes education? in all four years since i have been a diabetic, the extent of the mental health conversation in diabetes surrounded being aware that i should think positive and maybe take some more insulin around finals time. but why? no one EVER covered it.

in times of stress, your body enters fight-or-flight mode, which produces a secretion of cortisol, aka the stress hormone. this leads to the body producing more glucose to prepare to react to the stressful situation. for most people, this secretion is no big deal, because you will just counteract the glucose with some insulin. but for people like me, insulin is the whole problem.

so where am i going with this? well, it has taken me 4 endocrinologists, lots of wasted insulin pumps and insulin, plenty of skipped classes due to high blood sugar, and a really angry pancreas to realize what NO ONE EVER TOLD ME. stress will fuck you up. in so many ways.

well, what am i supposed to do now? drop out of grad school and move to an ashram so that i can live in a constant state of peace and tranquility? i mean, that would be dope, but as of now that just doesn’t seem like an option.

i think the best action step to take is to change the entire conversation around mental health and diabetes, whether you are type one or type two (or type 1.5?!??!!). taking small steps to improve your perspective can result in giant leaps for your glucose reading. doctors and diabetes educators need to stop pretending that diabetes occurs in a vacuum, when in fact the body is a holistic machine that is impacted by every ripple effect that occurs at any given moment of a day.

trying to keep a sense of humor is difficult when your blood sugar is so high that you can barely see, but it is definitely one (of the many) deciding factors that determines how the rest of my day (or at least the next few hours) will go. we need to stop pretending that the clinical field knows everything there is to know about diabetes management, because it is obvious that there is so much that we have yet to discern.

in the mean time, i’ll be here, journaling in my diary of a human pincushion, until i figure this whole thing out a little bit more every day.