progress!

did you know that there is a facebook page called “type one pay it forward?” i didn’t either until the other week. apparently it is a page like the “free and for sale” one we had in college where diabetics can post any extra supplies they may have and others can comment to obtain it.

to me, this is the most generous thing i have ever heard of. yes, of course, because it is just by principle a philanthropic move to donate goods for free or at a subsidized price.

but the thing is, this is more than that. some people even post vials of insulin- which, without the proper insurance plan, at the right time of the month, blah blah blah, can cost hundreds of dollars.

these people donate insulin, out of their own pocket, as if they don’t need it themselves. i can’t really grasp it. these people will. never. be. cured. and they will need that pencil case full of glucometers, test strips, glucose tabs, glucagons (just kidding no one carries those haha jk mom),  etc. for the rest of their lives.

…or will they? (dundundun)

it’s weird, and given i’ve only had diabetes (almost) 5 years… but i can see that something in the t1d community has definitely shifted over the past few days.

if you haven’t seen it yet, you must be living under a r— i mean.. you must have missed the good news! the food and drug administration (FDA) has officially made the artificial pancreas official. translation: things are happening! the artificial pancreas, which is not an organ, (even though that would be crazy!!!) is a “closed loop system” between my insulin pump and my continuous glucose monitor (CGM). this device would work almost on its own, meaning that instead of me guessing russian roulette style how much insulin to deliver, the AP would would just adjust my basal rate of insulin and bring me closer back to homeostasis.

it probably doesn’t sound like much, but this is life changing. to be able to move through a daily activity, even once, without thinking about my blood sugar is something that i have been dreaming of for half a decade. i know i’m not alone on that one.

but i think that things are changing. this “pay it forward” type one diabetes movement must mean something… if people don’t think they are going to ever be cured, why would they give any supplies away?

people are hopeful. with the donations family and friends, (and an all-around incredibly generous support group of what we like to call “type 3’s” aka “people that love someone with type 1”) we are getting close. not yet to a cure, but to something that will make a lot of people’s lives a little more manageable.

and then we need to make it affordable so everyone who wants or needs it has access to it. but that’s another story for another day 🙂

if you are so inclined, please consider donating to JDRF this year. my family and i are riding 100 miles this halloween, and i plan on carrying with me the names of everyone who donates to our page. (p.s. thanks mary gollings for the idea!)

we appreciate the love and support more than you know, and  now we can all see a tangible impact from all of your efforts.

you can find our ride page here.

thank you.

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.

 

lessons from mph

if i g a dollar got a for every time i heard that i, as a diabetic, am destined for death (or worse! I could lose a foot!!!!!!!!!!) in public health school, i would have enough money to bathe in a swimming pool of ice cream.

just kidding, i wouldn’t buy ice cream. because I have TYPE ONE DIABETES.* TYPE ONE. the genetic kind. i did not get it from ice cream. REPEAT. I DO NOT EVEN LIKE ICE CREAM. MY TEETH ARE SENSITIVE AND IT IS TOO COLD. we good?

*disclaimer. before you freak out, i’m mostly kidding. i don’t not eat ice cream because i’m diabetic, truly. diabetics can eat ice cream too. …  … ask me later. it’s complicated.

i had heard from my friends with medical training how much diabetes is talked about in health, but i definitely underestimated the amount.

it has become a joke with myself (i don’t have friends) that every time in class i hear “the prevalence of diabetes in this population” or “the risk of amputation given the condition diabetes” i just silently giggle to myself. unfortunately, i made the horrible mistake of wearing my cgm (continuous glucose monitor) on my arm for about two weeks. bring on the questions, baby!! i tried to pull ye old “wifi hotspot” joke (see first post), but no, these emory peeps are smart!! so now they all know that i am either a robot… or i am diabetic.

but the thing is, most people don’t know that i am type one. i can count on both hands the amount of times that i have been told “but you’re so young!” THIS WEEK. and it’s only wednesday!!!!!

you may think that it’s super awkward when everyone makes eye contact with you when the professor talks about a diabetic’s chance of dying (which happens every day) and you’re right!! it is totally awkward!!

and the worst part is, i’m not dying people!! i am alive and kicking and in pretty decent shape! (although this grad school sedentary lifestyle is starting to get to me.. but that’s another story)

this is why i think it is so important for me to be so incredibly obnoxious about my diabetes. yes, it’s a part of me and blah blah blah. but mostly, there are so many misconceptions about the condition (disease? whatever) and it is v i t a l to educate people about this! not only because i am a public health student, (wo0o) and not because of the rising rates of (type two) diabetes around the world, but because at the end of the day, you gotta flaunt what you got! and if this is my end of the straw, i’m gonna at least make sure that people don’t get it confused!

and mostly, i truly think it’s hilarious when people give me puppy eyes and shoot awkward side glances across the room when diabetes is mentioned in class. hello!! i see you!! i am riding 100 miles on a bicycle next month! (maybe.) i am so grateful for the body i was given and the access to medicine that allows me to live such a beautiful life. save the puppy dog eyes for fido/lassie/insertdogname.

namastay in bed

the only thing i spend just as much time thinking about / doing in my life as diabetes would most likely be yoga. no, i can’t (always) put my legs behind my head, and i haven’t found enlightenment (yet). but i do have a deep love and appreciation for both the physical and mental practice of yoga, which has given me both body awareness and mental clarity.

however! many yoga classes begin with a well-meaning lululemon-clad (i wear them too, but it’s true) fresh-out-of-teacher-training yoga teacher telling her students to take a deep inhale, and on the exhale, ‘let everything gooooo.’

i have a serious issue with this. i know it isn’t yoga-like (?) to pick apart other people’s statements, but telling someone to let everything go seems completely counterintuitive to the ‘point’ of the physical yoga practice. no one likes chair pose (or maybe that’s just me?), but the lesson yoga teaches you is to find contentment in whatever position you find yourself in- on your mat and in your life. sometimes it isn’t helpful to let ‘it’ go. what if you or a loved one were just diagnosed with a serious disease? what if there is an environmental disaster? what if there are problems at work that you don’t yet know how to solve? yes, yoga can serve as an ‘escape’ from the real world. but to me, the yoga practice is not about letting go of shit that happens in your life. because, to be honest, life is full of shitty people/places/events. as my mother always says, ‘everyone has their shit.’ for me, it’s diabetes. if i didn’t have diabetes, it would be something else. the universe sends you this ‘shit’ because if everything were always peachy, there would be no room for growth. the point isn’t to ‘let everything goooo,’ but to learn how to coexist peacefully with your shit.

yogic texts also place a large emphasis on non-attachment. i would love to be able to walk into a yoga class and leave all of my problems at the door. but the thing is, this is next-to-impossible for me, as a diabetic. i turn my basal insulin down by 50% two hours before class. if my blood sugar isn’t high enough, i have to eat something before class (making twisty poses super fun… bleh). i always have to tell the yoga teacher that i am diabetic and that i check my blood sugar in class (i learned this the hard way after being yelled at to ‘turn off my cell phone or get out of class’ a few years ago. nice.). i try to practice with my eyes closed, but i can always see people glancing over at me to check out what i’m doing on my little machines during class or trying to figure out what that wifi hotspot is on my arm. i check my blood sugar multiple times during class and adjust accordingly- if i’m too high, i turn off my lowered basal insulin. if i’m too low, i increase my basal and/or have to eat more. all i want to do is concentrate on my breath, but i’m usually too busy wondering if my hands are shaking because I just did 59,087 chatarungas (google it) or because my blood sugar is 59.

this also causes a certain attachment to the ‘things’ that keep me alive- my insulin pump, my continuous glucose monitor, my low-carb granola bars, blah blah blah. my dream is to have so little ‘stuff’ that i can pack a suitcase and relocate anywhere in two hours, but with diabetes this just isn’t the case. i traveled to india earlier this year, which was the most magical and eye-opening trip of my life thus far. yes, because of all of the things i saw and experienced, but also because of what it taught me. i so badly wanted to be one of those people who could fit all of their belongings in a travel backpack- ‘travel light, live light, spread the light,’ jah feel? so i went and bought one of those fancy backpacks and expertly packed everything i needed for a 3 week trip. except for one thing… where was i going to put my insulin pumps, test strips, needles, syringes, needle caps, ketone strips, glucose tabs… etc.!? i ended up having to bring an entire extra carry-on suitcase to fit all of the supplies i needed to last me one month of traveling (with 2x the supplies for when things go wrong. and they ALWAYS go wrong.).

so i’m left to sit with this dichotomy of attachment to ‘stuff’ and living light, between being focused inward and addicted to the arrow on my glucose monitor. unfortunately, i don’t see a time in the near future where i will be able to fully ‘let go,’ in a yoga class or during meditation. however, i’ve come to find gratitude in the body that i do have; my legs that carry me through various warrior stances and my breath that is a tool for focus, clarity, and inner peace. while i used to think of this as reconciling with an imperfect body, i’ve learned to (slowly and reluctantly) fall in love with the body that i do have, cyborg parts and all. and ‘letting go’ of the rest, for now, will do just fine.

diary of a cyborg

before i begin, i have to say thank you so much for the outpouring of love and support i have gotten over the past few days re: my first post. people that i haven’t spoken to in years have been reaching out to me, more people are getting edumacated on diabetes, and i think i have made at least one person laugh. sooo mission: accomplished. 

to be completely honest, i wrote this post three days ago on a high from such positive feedback from my first post. it felt so cathartic to get things on to paper (screen) that the possibility of having any other feelings didn’t even occur to me. yes, it’s been awesome, but then I started to get have second thoughts. do people actually think im funny? did that thought only make sense in my head? even a positive remark about my grammar made me realize that I hadn’t even been thinking about my grammar in the first place! 

on another note, i was reluctant to post for a few days because I was worried I would run out of things to talk about. but apparently this isn’t the case. for the past few nights, I’ve been waking up with low blood sugars and 5, 6, and 7 AM and have been 3/4 askeep writing random ideas for blog posts in my phone. kind of like a dream diary.. if you consider diabetes thoughts a ‘dream.’ overall, this has been a strange journey, but something i think i’d like to stick to, at least for the time being. hang in there with me 🙂

now, as i begin to try and define myself and my place in the world, this starts off simple– i am a girl (woman?!), student (but i just graduated…), okay fuck it. i guess i am at that awkward transition period in life where i am not a girl, not yet a woman.

all britney jokes aside, when i try to think of how i come off to others floating around this earth with me, being a diabetic is probably within the top 10 adjectives i would use. for some reason, this makes people REALLY REALLY angry. why? because apparently, diabetes is “not a disease, but a condition.” or perhaps because diabetes “does not define you, it is just a part of you.”

sometimes i have a serious issue with all of this empowerment bullshit. yes, it is important to find strength within yourself. however, calling diabetes a condition? fuck that. type one diabetes is what happens when the body stops producing these lil fuckers called beta cells. here’s a little scenario. muscles are on the inside of your house. you are insulin, and you looooove muscles. the house is locked. beta cells are the key; the only thing standing between you and your beloved muscles. you overslept this morning and ran to work and- shit!- you dropped your keys down the elevator chute. joke’s on you, insulin. you can’t get in the house. your muscles are saying, ‘bye, felicia.’ thus, type one diabetes.

wanting to be loved is part of the human condition. when my hair is frizzy (most of the time), i try to condition it. when i look for used textbooks online, i like them to be in decent condition. but an autoimmune condition that makes my pancreas stop accepting insulin and forces me to inject myself thousands of times and prick my fingers tens of thousands of times? to call that a condition is so funny i almost forgot to laugh. 

i get it. t1d is infamous for occurring in children (they don’t call it juvenile anymore- i was diagnosed at age 18 and some people are diagnosed even older than i) and it is definitely important to help kids believe that they can live just as healthy and active (and possibly even more so) of a life as a non-diabetic. i believe this so wholeheartedly that i have spent the past three years working for non-profits in dc and the dominican republic helping to empower people to take charge of their diabetes and realize that it can actually be a catalyst to better health and wellness.

HOWEVER. diabetes absolutely defines me. or at least a large part of me. for the first six months post-diagnosis i gave myself injections in the university cafeteria (which in hindsight was an awful idea; those places are full of germs and frat boys, which are essentially the same thing). (<- that was a joke, calm down.) anyway, the amount of dirty looks i received while delivering my pre-meal basal dose of insulin almost sent my 18-year-old-self-conscious-sorority-girl self (no shame) into a tizzy. people occasionally laughed it off and told me that i “loved the attention.” oh yes, i love needles in the back of my arm, you prick. (prick! get it!?!) after six months, i was finally allowed to get an insulin pump. yay! no more injections! wrong. i traded 3 injections a day for one injection every 3 days, which would be awesome except for the fact that it turned me into a cyborg. it took a while to get used to a protrusion on the side of my hip, arm, or back (which looks especially sexy in a dress. or a bikini. not.), but what took longer to get used to were some of the questions people asked me about my pump, including:

‘is that your cell phone?’ yes, and this is 1965.

‘is that your beeper?’ yes, im waiting for a page from my buddy barack.

‘can you shower with that?’ actually.. i dont shower..

‘that’s a weird looking nicotine patch.’ actually, i’m trying to get off heroin…

‘can you have sex wearing that?’ … my mother reads this blog.

to which i usually answer:

‘oh that? that’s my wifi hotspot.’ 

…people have actually asked me for the password.

psa: looking for more responses. the weirder the better. 

so yes, i am a diabetic. but i’m also a music lover, yogi(ni), friend, daughter, sister, traveler, and many, many more -er words that i haven’t even explored yet. and don’t even think about telling me that i’m not g-d empowered in spite of it. 

hey, suga

well, hello there! i guess this is the beginning of a new chapter in my life where i succumb to ye olde blog post. so welcome! a few things before we really get into it.

first of all, i have spent the past three years avoiding becoming a “blogger.” since my diagnosis with type one diabetes a little over three years ago, lots of people (my mother) have been reading diabetes blogs, sending me diabetes blogs, and encouraging me to write my own. it has taken me this long mostly because until now, i had not been able to find my own niche within the diabetes community. there are plenty of blogs out there about adults with type one, parents with type one children, athletes with type one, dieters with type one, blah blah blah type one blah. and to be honest, i would rather do just about anything else than ramble aimlessly into the blogosphere (is that a thing?).

people always say that if you want to write something well, write what you know. so what do i know? well. not much. but since diagnosis, i have had plenty of life experiences that should probably be documented somewhere, if not for my own cathartic enjoyment but because hopefully someone, somewhere can benefit from the mistakes i have made, the people i have bitched out (sorry to all my past doctors.. but not really sorry), and the amazing no-to-low carb foods i have eaten over the past three years (and thus, comes unsweet n’ lo [carb]). that was a run-on sentence.

the diabetes community is an unbelievably tight knit (no seriously, everyone knows each other. like jew geography) community that i have found to be incredibly nurturing and inspiring throughout my journey managing this condition. (disease? condition? who the f cares, but i will definitely get into that discussion eventually.) however, my one complaint with this is sometimes, when you’re having a low blood sugar or a high blood sugar or just a bad day not diabetes related at all, you don’t want someone to pacify you with a JDRF statistic or some inspiring bullshit about darkness and light. sometimes you just want to bitch. then again, sometimes you do want the inspiration (i am a yogi, after all). the point is, with this blog i promise not to censor myself and just be optimistic because that seems like the thing to do. hence, the “unsweet.” (i can be punny too.) speaking of promises, here is my manifesto:

---

~THE UNSWEET MANIFESTO~

I, Bella Girovich, promise to:

• be completely honest and uncensored (sorry mother)
• not preach. working for diabetes organizations and being around diabetes people (which means type ones, twos, and the ever-elusive type threes) over the years has taught me that even when people do not mean to, there is a lot of undercover judgment that goes on. for example:
  • ‘you dont use a dexcom? ooooohhhh…’ = JUDGMENTAL
  • ‘wait.. how many units of insulin do you take in a day?’ = JUDGMENTAL
  • and of course the ‘how many carbs are in that cookie you are about to put in your mouth?’ = you can tell yourself whatever you want BUT THIS IS REALLY FREAKING JUDGMENTAL. moving on.
• not be right all the time. or half the time. or ever, to be honest. because there is no “right” way to do diabetes. (if you know it, i will just quit now, you should be the one blogging.)
• and finally, i promise to be as not-basic as possible when posting about food. i just so happen to live in chicago and will be bouncing around dc, atlanta, and the rest of the globe from here on out. i also just so happen to love food. furthermore, i happen to eat an extremely low-to-no carb diet. this is not because i think it’s better for diabetics (or anyone for that matter), but it’s just what i prefer. i happen to think it’s awesome that i can go out to eat at any restaurant and have a diabetic-friendly AND drool-worthy meal at the same time. if i didn’t say anything, no waiter or waitress would even know i am diabetic. empowering shit.

as we have seen thus far, i will still probably (definitely) end up rambling, but hopefully with a little more aim. like my blood sugars, they won’t always be on target, but hey, it builds character. or at least that’s what i tell myself.

to conclude, here is a short video featuring the oldest surviving type one diabetic in the world thus far. 86. que wow! my thoughts on it are yes, this is awesome, but diabetics should not think of life in terms of “surviving” as long as possible. i’d like to think that more important than “surviving” til old age is “thriving” in my youth and beyond. yep, i can rhyme too. and with that, i’m out.