Diabetes Awareness Month: The Good, The Bad, and The Future

 Hi y'all!

Hope everyone's doing well!  I'm alright - getting through my first semester of college, surviving midterms and marching band and substituting too much coffee for too little sleep.

So anyway, it's Diabetes Awareness Month (AKA the birth month of literally all diabetics - I don't make the rules).  My November so far has been full of plenty of T1D things - I participated in an Omnipod wearability study, wrote a mildly concerning number of emails to Senators and other government officials, and got into at least one heated email debate with the office of said officials.  (Pro tip: if you put the words "with all due respect" in front of a sentence, the sentence itself can be as disrespectful as you want!)  I got lots of tests done, received some not-great news, and did a lot of reflecting about what comes next.

Let's unpack all that!

The Good

• Baby's first trial!

A few weeks ago, I participated in a 5-day trial for an Omnipod prototype!  The device itself was deliberately ineffective - it wasn't made to deliver insulin, so I was still injection-dependent throughout.  My job was to test the adhesive to see if it could last 5 days, and to evaluate how comfortable the prototype felt.

Now, y'all know I don't wear an insulin pump, so this was a totally new experience for me!  The device was big, and the site wasn't my favorite - they asked me to test it on my lower back, which isn't ideal for someone who wears a backpack all day.  But even with that working against me, it was amazing how quickly I got used to it.  The device stayed on the whole time, and similar to my CGM, I hardly noticed it after the first day or two.  It definitely got me thinking about my own future and the possibility of getting a pump at some point...

• Independence??

College, y'all!  It ain't high school!

The learning curve has been steep, for sure.  But honestly, it's been really validating to realize that I'm capable of managing my condition on my own.  Don't get me wrong, there have been some difficult moments - but on the whole, I'm proud of how I've handled it.  I know "no trips to the ER" sounds like a low bar, but if you're a PWD, you know that's something to celebrate.

And another thing - I've somehow managed to find a group of friends who are absolutely wonderful about all my health stuff.  I mean, I literally had a friend who left his dorm and walked halfway up science hill to bring me candy when my blood sugar was low.  All of my friends put up with my endless complaining about my blood sugar, and none of them stare or ask awkward questions when I do my insulin in public.  I'm not sure how I managed to get so lucky, but hey, I'm not gonna question it.

The Bad

• Burnout is real, folks.

Yep.  It's hard.

The thing about managing T1D on my own, with no one nearby to help me when it's one of Those Days (PWDs, you know what I mean), is that the exhaustion sets in really quickly and doesn't go away.  Y'all have heard me say this before: T1D is a 24/7 job with no breaks, no respite, ever.  And when you're dealing with it on your own on top of a full college schedule, god, it's overwhelming sometimes.

So there are days when it's all I can do to force myself to take my insulin.  And yeah, there are days when I can't even do that.  Most of the time, it's not that bad, thankfully.  But the bad days happen, and they'll continue to happen, so I get through them as best I can and wait for things to get better.

• I Am So Tired of Self-Advocacy: the title of my rage-fueled memoir

Okay, I know I've written here about my journey with accommodations.  Overcoming the shame that came with asking for help, and then realizing that that was only the first step of a long and arduous process.  Well, guess what?  In college, it's the same, only there's no parents or advisor to advocate for you.  It's all on you.

Getting my accommodations at Yale has been quite the ordeal.  It took months to even get a response from the Student Accessibility Services office, and another few weeks to get my request formally approved.  And then, of course, one of my professors found a loophole in the accommodations I'd been given, essentially penalizing me for stopping to treat a low during exams.  Yay. (/s)

So back to SAS, another round of emails, a meeting with my dean and another with the office, and I finally got a new set of accommodations approved.  I was lucky that I had an amazing peer mentor (who also has T1D and is an amazing person!!) to help me through the process, but even so, I was frustrated with how much responsibility fell on me to essentially annoy SAS into listening to me.  I know I'm looking at a lifetime of this - that's just part of living with a chronic illness - but that doesn't make it any easier.

The Future

• Being both doctor and patient

One of the coolest things I've gotten to do at Yale has been shadowing in the hospital!  I've had the chance to observe several incredible procedures in the OR and interact with patients in a clinical setting.  As an aspiring surgeon, I've loved getting a firsthand look at what my life will be like a decade from now - even when that means I have to stop and consider how my condition will impact me in my career.

I will say, I've gotten pretty good at keeping it on the down-low.  I keep one pack of fruit snacks, two syringes, and one vial of insulin in the pocket of my scrubs, and if I need to treat a high or low, I just step into a corner and do what I have to do, as quickly and quietly as possible.  (The great thing about being surrounded by healthcare professionals is that no one stares or makes rude comments when I pull out a syringe!)

I'm learning what my limits are - how long I can go in the OR without food or water, how low I can get without my hands shaking, etc.  I'm aware that my condition will be a barrier for me in a surgical career, but I'm confident that I can manage it.

• My Body Has Found a Fun New Way To Express How Much It Dislikes Me: the title of the exhaustion-fueled sequel to my memoir

If y'all have been following my blog for a while, or if you've gone back and read some of my old posts, then you know T1D isn't the only health issue I've been dealing with.  Without going into too much detail - because nothing is certain right now, and likely won't be for the next several weeks - I recently got my yearly tests done, and one of them raised a pretty big red flag.

So, I'll get some more thorough (translation: invasive) tests done over winter break, and until then I'll hope that the doctors' suspicions, and mine, are wrong.  Obviously, I'll keep y'all posted no matter what happens.  Till then, don't worry too much - I'm in frequent contact with my doctor, annoying him with an incessant stream of questions, true to form.

That's all for now, folks.  I'll post again in a month, one way or another, because that's when I'll have test results.

Love y'all!

Overnight Low Journal

Hey y’all!

So, I started college!  I’m now 1 month into my first semester at Yale.  It’s so fun but absolutely exhausting, not helped by the challenges of managing T1D effectively on my own.

I thought I’d try something new for this post!  Y’all know that I struggle pretty badly with overnight lows (my endo has pretty much given up on fixing them at this point - we’ve tried everything, lol).  So I decided that for 1 week, whenever I had an overnight low, I’d open my notes app and write down what I was thinking!

If y’all know me, you know that I have no filter when I’m low - especially when I’m both low and tired.  So I apologize for the uncensored nature of what you’re about to read - but hopefully it’ll make you laugh and also give you a glimpse of what it’s like to wake up with low blood sugar night after night.  Here goes!

4:12 AM, sep 17. 49 and steady.

i actually originally treated the low 15ish minutes ago but forgot that i had this idea to write stuff down - and also i was so shaky and disoriented i doubt i could’ve written anything before now anyway. (thank god for autocorrect because otherwise this would be unintelligible.) i’m gonna prolly be up for a while because this is one of those having-trouble-breathing episodes and that always gets my adrenaline going… tempted to just get up now since i have to be awake in 3.5 hours anyway. but i’m still so tired. here’s hoping we get above 60 soon so i can get another sleep cycle in before morning!

For context: I’m generally supposed to wait until my blood sugar gets out of the danger zone before falling back asleep, because if it continues to drop, dex won’t beep again and it would be very easy for me to slip into a coma without anyone noticing.  So that’s what the “above 60” thing is referring to.

3:48 AM, sep 18. 48 and dropping.

gotta love a new sensor, right? this def isn’t an error because i’m 100% feeling it, but I think the fact that it didn’t wake me up sooner was prolly an error. yay. not feeling super horrible - just really dizzy, but that’s nothing new. I’m so tempted to just fall back asleep right now, but *safety first*, right? we’ll see if I can force myself to stay awake for this one. no promises. lol it would be kinda morbidly funny if those were my last words bc I fell asleep and didn’t catch it dropping again. do they count as last words if they’re typed and not spoken? do non-chronically-ill people think about this stuff as often as PWDs do? bc lemme tell ya, we think about it all the time. ok I feel like this is just incoherent rambling at this point, so i’ll sign off here. g’night!

Note: Yes, we think about this stuff a lot.  It’s no exaggeration when I say that waking up in the morning is an accomplishment on its own, because when your body is constantly trying to kill you, sleep is incredibly dangerous.  Especially on the first night of a new sensor, like this one, when it sometimes fails to provide the proper alerts.

3:56 AM, sep 19. 56 and steady.

why am I awake why am I awakeeeee dex didn’t even beep yet because this isn’t an “urgent low”, but damn, it sure feels like one. remind me to calibrate in the morning because I’m guessing it’s at least a little off. also - I have to remember to put more fruit snacks by my bed, because this is my last pack and if I go low again I’m gonna have to get up and that might wake up my roommate. I’m so glad she’s a sound sleeper bc otherwise she’d get woken up pretty much every night by me and my apparent inability to control my blood sugar. you’d think 11 years would be enough time to be good at dealing with this, but here I am, feeling like an idiot because it’s 4am and I just want one night where I actually sleep through the night.

Note: The following night I had to pull an all-nighter to finish an essay, so I was snacking and therefore didn’t have any lows! But also didn’t sleep.

1:46 AM, sep 21. LOW and steady.

fuck. not sure how it got this low without me waking up but ughhhh earlier today it was above 400 and now it’s below 40 which means I feel like I’m actually dying, lol. so dizzy, everything is blurry, hands are so shaky that I can barely hold my phone, let alone type. trying so hard not to black out. that’s what I get for overcorrecting ig? I don’t mean to sound like I’m complaining (even though I am… lol) but I went to bed already feeling like I was at my limit with t1 stuff and now it’s 2:whatever in the morning and even now I can’t escape it, ya know? and yes, I have a 9am class tomorrow, so I’m gonna be falling asleep in class (again). ok - done complaining for now - gonna prolly be awake till it gets above 50ish and then hopefully I can get some decent sleep.

3:01 AM, sep 21. 52 and steady.

I have nothing further to add except that this sucks and I wanna be asleep.

For context: double lows (or triple, or whatever) are the worst.  If I go low multiple times in one night, especially if one of them is below 40 like this one was, I’ll be feeling it for the next 24 hours - headache, noise/light sensitivity, fun stuff like that.  Sorry for the bad language, but 2am me was really mad about that one.

3:49 AM, sep 24. 42 and steady. 

oddly fitting that this is my last entry in this funny little journal. i never ended up calibrating the other day (should reeeeally do that!) and wow, 42 steady when it’s actually prolly more like 32 feels… exactly how you’d expect. which is to say, bad. i realize i sound like i’m complaining and i’m so sorry about that!! i sorta am, but also i swear i don’t mean to. this really isn’t so bad - the rain sounds pretty and there’s something quite nice about being awake but not having any work to do except backread the happy campers group chat (shoutout!). also for some reason even though it’s lower now than it was when i first woke up, i feel better? like, i can breathe now and my heartbeat isn’t painful (also, note to self - figure out why that’s a thing that happens? bc as a premed student, that one is a bit curious). i’m gonna be tired in the morning but honestly, i was gonna be tired regardless, lol. once i feel less dizzy i’m gonna go back to sleeeep because that sounds really lovely rn (i should wait for it to be above 60 or something but i’m just gonna wait till my head stops feeling spinny and that’ll be good enough. precise medical measurements? nahhhhhhhhhhh.) and on that note, i’ll sign off! g’night💕

So there you have it - one week of uncensored low blood sugar thoughts from yours truly!  Stay safe everyone - I'll try to write again soon.  Love y'all!

College!

 Hi y'all!

Ok.  Yeah.  I haven't posted in... 5 months?  Oops.  Sorry about that.  Life happens, ya know?  Let's skip the me-making-excuses part and get to the post.

One of the things that happened during my extended hiatus was that I committed to Yale!  Yay!  I'm so excited that I'll be pursuing my dream field at my dream school.  Of course, T1D adds a lovely layer of extra planning and worrying to any venture, and college is no exception.  So this post will be a glimpse into what it's like getting ready for college while dealing with a chronic condition like T1.

Obviously, in high school, my 504 plan took care of most of the accommodations I needed.  Now, that's not to say that getting that plan was easy, or that all of my teachers respected my needs all the time.  But overall, it was pretty much a one-and-done kind of situation.  In college, it's... not quite that simple.  The fact that our student body is so much bigger than Niles North, combined with the fact that every professor runs their classroom a bit differently, makes it hard to account for all of the possibilities.  I've been working with my endo to come up with a comprehensive list of everything that needs to be considered; using my phone in class for Dex is the biggest one, obviously, but there's also things like rearranging my class schedule to make sure I have time to walk across campus without my blood sugar plummeting, and getting permission to reschedule exams as needed.  In total, I've got a list of more than 10 accommodations that the university is legally required to provide.

Now, all that might sound a bit overwhelming to any non-PWD.  But it's easily overshadowed, at least in my mind, by the biggest issue: for the first time in my life, I'll be living without my parents.

Y'all know I'm seriously thrilled about getting some more independence and having the chance to make my own decisions.  But the fact remains that no matter how frustrating it can be to live at home, I've got two people in the house who know exactly what to do if I have a hypoglycemic episode.  If I feel like I'm going into DKA or feeling sick after a rebound, I can rely on the people around me to know what I need and help me get through it.  And now... now I'm going to be over 800 miles away from home, surrounded by a bunch of people who may not have ever heard of Type 1 Diabetes.

I've never been ashamed of my condition.  Ever.  If you went to elementary or middle school with me, you know that even when I was a kid, I was always happy to answer questions or teach people about what it means to have T1D.  The result of that was that by the time I got to high school, the majority of my friends already knew at least the basics of Type 1.  Sure, I had to explain it to the new friends that I met along the way, but at any given time, I could usually count on at least one person to know what I meant if I said I was high or low.

But there's something about the idea of having to explain T1D to a whole new group of people, that makes me wonder if it would be easier to just... not.  To do my insulin in the bathroom instead of the dining hall, to wear my CGM on my stomach instead of my leg.  But the truth is, that's not an option for me.  Because in the event that I do need help, I won't have my old classmates there to get me what I need.  That's the reality of having a chronic illness: at any given time, your survival could literally depend on the people around you.

So yes, at some point I'll tell my friends about the weird little machine on my leg.  At some point, I'll apologize to my roommate for the inevitable low blood glucose alarms that will wake both of us up during the night.  I'll show my suitemates how to use a Glucagon and tell my professors not to yell at me for eating during class.

And then I'll do college.  Just like anyone else.  It'll be busy and confusing and so, so, so much fun.  I'll learn new things and make new friends and figure out how to store a whole bunch of needles in my dorm room without making it look like I'm doing something illegal. (Ok, so maybe not exactly like everyone else.  But close enough.)

Oh, and to any Yalies who are reading this: Hi!  I'm Abby.  I'm a MCDB/psych major, aspiring surgeon, tennis player, musician, and bookworm.  And I happen to have Type 1 Diabetes, which is probably not as scary as you think it is.  Come chat with me!  You know how to reach me, and I'm always looking for new friends.

Stay safe y'all!  I promise I'll write again soon.  Sending love to all of you!

Vaccines, Society, and the Progress We Haven't Made

 Hi y'all!

Happy new year!  I know it's been ages since I posted.  It's hard to stay motivated during remote learning, ya know?

I was reading the newspaper yesterday and I saw an article about the new COVID-19 vaccine.  Super exciting, right?  I'm so excited to be able to leave my house again.  It's been a loooong year, and everyone in my family is eager to get the vaccine and start returning to normal life.

In Illinois (and most other states), the vaccine is given to people in phases.  According to the article that caught my eye yesterday, phase 1a consists of healthcare workers, phase 1b consists of seniors and essential workers, and 1c is - and I quote - "people with medical conditions that make them high risk, like cancer and diabetes."

So.  Yeah.  Great, right?

Not so fast.  I've been living with T1D for almost 11 years, so I know this drill pretty well.  See, here's the thing - since 95% of diabetes cases are T2D, lots of folks kinda just forget that the rest of us exist.  "Diabetes" becomes synonymous with T2D, and folks with T1 are left to do our own research and figure out whether the topic in question applies to us or not.

Research time!  Flipping over this particular rock reveals a whole mess.  Long story short, because people with T1D are so often forgotten, there's no standard procedure for where we belong in the vaccine phases.  Some states specify that Type 2 Diabetes falls under phase 1c, but don't mention T1 anywhere.  Other states just say "diabetes."  A few just say "high-risk conditions," leaving folks with T1 confused as to whether we count because we don't fall under the usual list of comorbidities, but we're still at a higher risk of COVID complications.

Thanks to pushback from the DOC, a couple states (2, to be exact, plus Washington, DC) have modified their lists to include T1D in phase 1c.  But the rest of us are left in confusion, with very few resources.  Even my endocrinologist doesn't know whether I'll be able to register for 1c or not.

And the worst part is, I'm used to this.  Most of us are.  Every PWD knows the feeling of hearing "this diet prevents diabetes" or "take this medication to get rid of your diabetes."  We've all had people say "oh yeah, my grandma/cat/some random person I met once has diabetes" and then assume they know everything about our condition.  Even TV ads for T2D medication don't always specify that they're only meant for T2... which is why we so often end up hearing people say "You have diabetes?? You should take this pill! I saw it on TV!"

If y'all have been following my blog, you know that T1D and T2D are completely different.  (And if you haven't, I suggest you go check out my other posts, because you're probably pretty confused right now!)  So when people assume they understand our condition just because they have some experience with T2, the results can range from annoying to downright harmful.  Society's consistent refusal to differentiate between the two types results in stigma, reduced quality of care, and - in cases like the vaccine list - potential danger when we're denied access to a lifesaving vaccine for a virus that poses a higher risk for us.

So, bottom line: We have a lot of work left to do.  As long as misconceptions and misinformation about T1D remain commonplace, we will continue to encounter issues like this one.  Folks with T1 are usually happy to answer questions from people willing to learn, but correcting people who confidently preach wrong ideas gets exhausting.  Do your research, please, y'all.  And to all my fellows PWDs - stay safe and stay strong.  Love you all!