The Link: Reflections on Isolation and Community

Hi y'all!

Happy New Year!!  It's been quite a semester, quite a year, quite a wild ride in basically every way.  Life at Yale is intense in a way that my body and mind were definitely not prepared for when I first stepped foot in New Haven, and it continues to throw curveballs that I never see coming.  Existing in this place - just existing! - with a chronic illness is a challenge, to say the least.

At Yale, where displaying anything resembling weakness is next to unthinkable, living with T1 is profoundly isolating at times.  A high or low blood sugar can remove us from the task at hand, be it class or rehearsal or socializing, no matter how hard we fight to stay present.  When you're already up till 3am studying, sparing an hour to recover from an urgent low is unthinkable.  So we learn how to fight through the brain fog, push ourselves past our limits, run across campus when we feel like we can't breathe because being late to class or even cancelling plans with friends just isn't an option.  And when we say we're exhausted, we don't just mean academic stress or late-night parties; our very survival is exhausting in a way that we are never really allowed to express.

It was this experience, and the realization that others like me were going through the same thing, that prompted me to start a chapter of what is now known as the Diabetes Link.  Formerly known as the College Diabetes Network, this national organization serves as a resource and community for young adults living with T1.  Not unlike the Pin Cushions and the other online groups I've created and continue to moderate today, the main purpose of the Link is simply for folks like us to realize we're not alone.

Building a community doesn't happen overnight, so I was shocked by how quickly our little family sprang into being.  At a school where everyone is chronically overbooked, even an hour is a lot to ask of people's time, and knowing this all too well, I was more than a little afraid that no one would show up to our first meeting.  But the amazing PWDs on our campus proved me wrong (as we so often do!).  Our chapter now consists of more than a dozen undergrads and a growing number of grad/professional students.  Some of us have been living with T1 for decades; for others, it's been less than a year.  We all use different devices and have different philosophies about managing our condition - but all of us share a common struggle that can't be put into words.

Sometimes, our meetings revolve around this singular commonality - we've spent hours just discussing bad blood sugars and good endos and everything in between.  But my favourite meetings have been the ones where we just get to exist - go apple picking, get ice cream, bake cookies - without having to explain ourselves, make excuses, or mask our reality.  When three of us decided to split the cider donut sundae at the apple orchard, we argued about the carb count and made the sort of jokes that even our closest friends wouldn't understand.  My blood sugar shot up to 250, and I wasn't afraid that my friends would judge me or panic the way most non-PWDs would.  We just laughed at the incessant beeping of my pump.  And god, it felt good.

Despite all the (literal) highs and lows - the hospital trips, sleepless nights, and lost accommodation battles - I'm starting this year off feeling unbelievably grateful.  I don't know whether I'd have made it through this semester without our dysfunctional, sleep-deprived, pancreatically challenged little family.  Here's to you, here's to us, here's to what's to come, here's to facing it all together.

Love y'all!

Advocacy Is...

Hi y'all!

At this point, you're all aware that Congress has decided to strip all provisions for insulin from the prescription drug pricing bill.  You've seen my anger on social media, so I won't rehash it here, but let's just say the past few days have been consumed by our collective effort to fight back.

In the midst of all of this, I've been doing a lot of thinking about advocacy. (I mean, not exactly a surprise, seeing as basically every waking moment since the news dropped has been spent on exactly that.)  So, what is advocacy?  For me, a whole lot of things.  Here are a few.

Advocacy is putting your own mental health spiral on hold when you get a text breaking the news - "they screwed us over again" - and suddenly nothing else matters.  It's an emergency Zoom meeting link sent in an email with the subject line "what the fuck."  It's all hands on deck, all lives on pause, all in until we figure out what to do.  It's the exhilarating feeling of jumping into water without knowing how deep it goes - how long the battle will last.

Advocacy is an hour-long meeting that takes you from "it's good to see you again, Senator" to "with all due respect, sir, that's not good enough."  It's the realization that you're no longer scared of authority figures, and the pride that comes with that.  It's the sting of disappointment when your favorite Congressman tells you, as gently as he can, that you might have to wait for the next election cycle, and it's the sting of your split knuckles when he ends the meeting and you punch a wall in anger.

Advocacy is an endless string of voicemail boxes, dial tones, and heated conversations across the country.  It's the feeling of your voice going raw from hours of repeating the same call to action.  It's typing up emails to Senators while you sit on hold with their offices.  It's hanging up the phone and screaming into a pillow, playing a Green Day song just so you have an excuse to yell a few curse words, and then taking a breath and dialing the next number.

Advocacy is camaraderie with people you've never met.  It's a lunch break FaceTime with exhausted faces and coffee cups on screen and blood sugar monitors beeping in the background.  It's organizing for a rally you won't be able to attend, lamenting the price of plane tickets and the existence of work schedules, brainstorming ideas for protest signs and cheering as they're written.  It's pooling your Capitol Hill contact lists to schedule as many meetings as you possibly can and texting the group chat whenever you get a particularly clueless staffer or a particularly powerful connection.

Advocacy is anger, bitterness, exhaustion.  It's Zoom fatigue so profound you feel like a high school senior again.  It's an overpowering rage at the broken system and the people who uphold it.  It's long rants to your partner and long emails that will never get a response.  It's sharing your story - your trauma - countless times and seeing how little it matters.  It's the painful moments when that voice in your head begins to wonder if your work means anything at all in the face of such steep odds.

Advocacy is, at times, despite it all, the only purpose I can find.  It's the only thing worth doing when the world says there's nothing left.  It's the thing that gets me out of bed on my worst days and the spark that turns defeated anger into dry, brittle, flammable rage.  Advocacy is, above all, the art of creating hope where none exists.  And for that reason, it is everything.

I don't know whether our efforts for this bill will pay off, but there's always another fight around the corner.  Stay strong and stay safe.  Love you all.

Pump Journal

 Hi y'all!

So, here goes.  Hi world, I'm officially an insulin pump user!  I've had the Tandem x2 pump for a full week now.  It's been... a lot to adjust to.  Stick with me for a minute and I'll take you through what the Tandem trainer described as "the first week of the rest of my life."

Day 0

Ok, I'm not totally counting this as a pump day because I haven't turned on Control IQ yet (Lantus is working till midnight so I don't want a double dose of basal).  But hey, I'm wearing a pump!  I had training early this morning and have spent the day getting used to my new Tandem x2.
Insertion was... fine?  Better than I expected, for sure.  I was pretty anxious about that part, but it wasn't much worse than a Dexcom insertion or even a Lantus shot (PWDs, y'all know exactly what I mean, lol).

Being connected to a tube feels strange, but I definitely anticipated that.  And I can now officially say this is the longest I've gone without an injection since I was 7 years old - wow, that's something, isn't it?

Excited for Control IQ to kick in tonight.

Day 1

Today was a bit rough, both mentally and physically.  Trying to step back and give y'all an honest look at how things are going.  Let's see.

I do really like Control IQ.  I'm still struggling with trusting the algorithm to the extent that I should, but I think that'll get better in time.  The biggest hurdle right now is that I have to relearn how to count carbs, something I never actually mastered because I simply never needed to when I was doing my own doses.  I feel like a lot of the control has been taken out of my hands.  It's incredibly frustrating and makes me feel powerless over my own condition, which I definitely didn't expect.

I'm also working through the whole visibility thing.  I'm trying hard not to let my self-confidence go too low, but it's a battle.  Still ended up hiding in the bathroom at work to do my insulin because I didn't want to deal with all the stares and questions about my pump.  It'll get better, I know it will - I'm just not there yet.

Day 2

Feeling a little bit of classic T1D frustration today.  Got a few of the usual comments from folks at work - and yes, I'm very very used to that, but it was my first time dealing with it since getting my pump, so it flustered me more than usual.

I've posted about this before, so I won't go off about it right now, but please, non-PWDs, understand that there are things that are ok to say to us and things that you really really shouldn't.  Yes, I wear machines to keep me alive, but I'm still a human being.  Good intentions can only get you so far when you're saying ignorant and hurtful things.

Day 3

First site change today!  And it turned out to be a double site change because, true to form, Dex died overnight after only two days.  All in all, the process took over 10 minutes - I had to stop and check my notes several times to make sure I was priming the cartridge correctly.  For someone who can do a Dexcom site change in 120 seconds, that was a less-than-stellar feeling, lol.  But hey, at least I did it!

Blood sugars have been good; honestly, this is already the longest I've gone without an overnight low in months, and I'm noticing a tangible difference in my energy levels as a result.  Carb counting is still proving difficult, but I'm getting a little better every time.

Day 4

Today’s been a roller coaster.

First of all, in an effort to boost my self-confidence, I wore a crop top that clearly showed both my pump and Dex. For those of you who don’t know, a crop top is a daring move for me on the best of days because it brings up a whole bunch of body image issues, so I can’t really articulate why I chose it on this particular day; I guess it was an attempt to “jump in the deep end” in terms of visibility. It worked a little bit, until it didn’t, but I was sorta proud of myself anyway.

I also posted a pump pic on social media for the first time, and then promptly deleted Instagram from my phone so I couldn’t spiral over it too much. Hoping that will get easier soon, lol.  I'm forcing myself to be as open and visible as I can, because my role as an advocate demands it and I feel like I owe it to my community, but that certainly doesn't mean it's easy.  Grateful for the support of my friends today.

Day 5

Hello from the OR!  I'm with the Lurie transplant team today, which means I get to test-drive exercise mode for the first time.  I'm writing this between a liver resection and a kidney transplant, and so far, things are going smoothly (both with the surgery and with the pump, lol).

OR days are always super hard on my blood sugar levels - I don't really get to eat, or drink, or even sit down.  So I've been keeping my fingers crossed that having a pump would help with that, and it seems to be working beautifully!

Today has brought up a lot of Thoughts(tm) about T1D ignorance and misconceptions within healthcare, so expect more about that in a future post.  Had a nurse tell me today that my blood sugar of 157 was too high, and I literally just started laughing because I was more worried that it was dropping low.  It was funny in the moment, but I'm trying not to think about what would happen if that nurse had a T1 patient.  Anyway.  More to come on that later.  Transplant time!

Day 6

Site change day!  I ended up waiting till the evening to change, since I still had enough excess insulin left in the cartridge.  I was proud of how quickly it went this time - definitely an improvement from a few days ago.  Having a site change every 3 days is one of the hardest things about wearing a pump, and I'm dreading having to figure that out once I'm back on campus, but I'll make it work.

I've been fighting some stubborn highs today, but nothing unmanageable.  Proud of how quickly I've learned to anticipate what the pump is going to do and incorporate it into my decisions.  I still occasionally have moments of oh shit, I'm gonna be wearing this thing for the rest of my life, but those are getting less and less frequent.  I'm getting used to untangling myself from seatbelts and learning how to not lay on top of my pump when I'm sleeping.  Progress!

Day 7

Wow, it's hard to believe it's been a week.  What a roller coaster it's been, right?

All in all, I'm really glad I switched to a pump, and pretty surprised by how quickly I've gotten used to it.  It's imperfect, and often difficult, as all things are with T1D.  But hey, I wouldn't be here if I hadn't learned to get through the hard times.  And it can only get better from here!

Thanks for reading, thanks for supporting, thanks for being so wonderful.  Love y'all very much.

Hot Diabetic Summer (or, thoughts about confidence)

 Hi y'all!

Hope you're all doing well!  It's summer, so true to form, I have been doing approximately 0 relaxing.  Work, shadowing, babysitting, studying, more work, etc.  Just how I like it!  And I do have the update that I alluded to in my last post... we'll get to that in a minute.

Someone I love very much was recently diagnosed with a chronic condition, and we had a long conversation about life after diagnosis and how to handle conversations with friends and classmates.  Sometime during the course of our phone call, she proudly mentioned her new medical alert bracelet (with a beautiful pink band, of course).  I laughed and told her about how excited I was to get a pink and purple one when I was diagnosed at age 7.

I haven't worn a medical ID in years.  My endocrinologist told me to get one for college, and I meant to, I really did.  But... somehow I couldn't bring myself to wear it.  I remember how proud I was of my bracelet in first grade - not just because it was pretty, but because I saw it as a symbol of my strength, and I was eager to tell people what it meant.  I've never been one to hide my condition - y'all know that.  That's why my advocacy journey was such a natural one.  Speaking to senators about my diagnosis didn't feel much more difficult than speaking to my classmates or teachers.

But over the past year or two, especially since starting college, I've felt that openness become harder and harder.  It's interesting, and surprising, and a bit frightening, especially since I don't have a reason that I can articulate.

Logically, I've always known and understood the stigma that comes with my condition.  I know that while I wear my scars and medical supplies as badges of courage, plenty of people view them in a much more negative light.  That was a lesson I learned at an early age.  I still remember how my heart hurt when I returned to my first-grade classroom after a week in hospital and the boy at the desk next to mine loudly asked the teacher if he could move to a seat "away from the sickness."  And I still feel the stares and whispers when I go to the pool and the bruises on my stomach and thighs are exposed, along with the glucose monitor that sits on my skin for all to see.  These things weigh me down.

And as all of those thoughts swirled around in my mind with increasing frequency and intensity these past several weeks, I found myself faced with news that served to exacerbate them tenfold: after months of an endless battle with insurance, I was finally approved to start using a Tandem X2 insulin pump.

I was thrilled.  I am thrilled.  I've been on MDIs for 12 years, and while a pump certainly isn't easy or painless, I'm more than ready for a change.  But the same day the approval came through, I found myself staring at my Dexcom in the bathroom mirror and deeply, viscerally hating it.  Never before have I viewed that miraculous device as ugly, but now, that's the word that flashes in my mind whenever I see it.  So how will I handle being attached to another device, one that comes with a cannula and coils of tubing?

I never thought I'd be someone who struggled with being open about my condition.  So I was taken by surprise when that disgust - the same disgust I see on the faces of strangers in public - hit so intensely.  I found myself scared to tell my partner about my new device, and I still haven't found the courage to tell my friends, because it doesn't feel right asking them to accept and love a part of myself that I can't even manage to accept and love.  What happened to the kid who didn't care what the world thought?  When did I become someone who does my insulin in a bathroom stall at work?

The truth is, after more than a decade of living in a world that is so quick to judge people like me, confidence just doesn't come naturally anymore.  It takes a very real, conscious effort to gather enough courage to show off the parts of me that I've been taught to hide away.  And yes, that effort is exhausting - but it's also so important, and I'm working every day on finding the strength to accept the "ugly" sides of my condition.

So when my pump arrives next week, I'll wear it with as much pride as I can muster.  I know some days, confidence will be in short supply.  But I'll get through it!  I'll keep showing the world that my condition, all of it, can be beautiful.  And while I show them, maybe I'll show myself, too.

I Didn't Post On My Diaversary

 Hi y'all!

Happy summer!  Hope the world is being kind to you.

For those of you who have been here for a while, you know that I always post on my diaversary.  April 21, 2010 was the day I was diagnosed, and it's a day that carries a lot of significance for me, in ways both good and bad.  At its best, it's a day of triumph at surviving another year of my own body trying to kill me every minute; at its worst, it's a reminder of everything I lost all those years ago and how far I still have to go.  Either way, it's important.

I was going to post this year, I swear.  I don't know what I was going to say - I never plan out my posts in advance; they just kind of spill out of my brain when I open a blank page - but I know it was going to be something.  And then, true to form, diabetes decided it had other plans.

The night of April 20th was not an easy one.  I was in final tech rehearsals for a play that was being performed outside, and it was cold.  And of course, both cold and stress increase insulin resistance.  I genuinely can't remember the last time I found it so difficult to keep my blood sugar in a safe range.  I ignored every guideline about stacking, threw caution to the winds, and injected probably two or three days' worth of insulin over the course of five hours.  Nothing made a difference.

I finished tech rehearsal around 11, somehow managed to walk home, threw up in my dorm bathroom,  curled up on my bed, and proceeded to not move for the next several hours.  I know what DKA feels like, of course - pretty much every PWD does - but it had been ages since I'd had symptoms this intense, and they didn't let up for most of the night.  It's nothing I hadn't felt before, and nothing I won't feel again, but that doesn't mean it didn't affect me; I couldn't do my homework that night, let alone write a blog post.

There's a very real trauma that comes from diagnosis.  Some of my T1 friends were diagnosed at such a young age that they can't remember what it was like - but I do.  And starting my diaversary in DKA was the perfect way to bring all of those memories rushing back.  "my body rly said #tbt," I texted a friend at 1am.  The flashbacks were intense - probably worse than any I've had - and I struggled to stay grounded, both overnight and throughout the following day.

So how do you get through a day when both the past and present are teaming up to remind you of the weight of this particular burden?  Good question.  I've had twelve years of practice pushing through days like that - because sometimes when you feel like you can't do something, the universe just laughs and says, "do it anyway."  And so you do.  I relied on my incredible partner, my friends, and a healthy dose of pain meds.  I went to classes, somehow, and then slept for a few hours so I could get through opening night of our show.  I tried to stay present.  I tried not to think too much about where I was on that day twelve years ago.  There's a time for reflection and remembering, but there's also a time for survival, and right then, that was all I could manage.

I'm learning to make peace with that fact.  Being an advocate means feeling a certain obligation to share these parts of my struggle, showing the world what it's like to live with a condition that leaves me fighting for my life at the most unexpected moments.  But on my diaversary, I made a choice to just survive.  Even now, a month later, I'm reminding myself that I don't have to feel guilty for not marking that day with the reflection I know it deserved.  I'm trying to believe that sometimes, just surviving is enough.

Love y'all.  Thanks for being here.  Stay tuned for another post soon - I should have an exciting update next week!

The Paradox of "Juvenile" Diabetes

Hi y'all!

I know I haven't posted in ages - sorry about that.  Second semester is even busier than first, which I didn't think was possible!

First things first: I know I left y'all on a bit of an unintentional cliffhanger.  I spent a decent chunk of my winter break in and out of hospital getting tests, etc, and the results were better than expected!  There are things we need to keep an eye on, and more tests to be done, but for the moment, we've avoided the worst-case scenario we were bracing for.  Yay!

Today's post is part information and part rambling reflection, just because that's where my mind is right now.  If you're a PWD (or if you've been friends with me for long enough, which as far as I'm concerned makes you a PWD-once-removed), a lot of the info won't be new to you, but stick with me.

So, all y'all know that I've done a lot of advocacy work for JDRF, including my congress trip that I've written about pretty extensively on this blog.  I've been involved with this organization since the year after my diagnosis, and while there are some things about them that I don't condone or agree with, I am proud of the work I've done and of the progress the group has made.

When I first joined JDRF, the group name wasn't just an acronym; it was spelled out: Juvenile Diabetes Research Foundation.  This was the name from decades ago, when JDRF was first founded, back when T1D was commonly referred to as "juvenile diabetes."  A few years ago, JDRF dropped the words behind the acronym - I've never been able to understand why they didn't just find a new name, but the point is, they took a firm step in moving away from the "juvenile" label.

There's a good, obvious reason for this change: the name "juvenile diabetes" simply isn't accurate.  Yes, it's true that many of us (myself included) are diagnosed in childhood.  And yes, this is one of the many things that separates us from T2D, which is usually diagnosed in adulthood (though this, too, is inaccurate for some patients).  But there are plenty of people with T1 who were diagnosed in their twenties, thirties, or sometimes even later in life.  This is one example of how the terminology we use to discuss conditions like T1 is constantly changing and becoming more accurate.  There are still doctors, researchers, and professors who use this term, and I get it - change is hard.  But it's a distinction that's important to me, and to a lot of other PWDs.  Nowadays, most scientists consider "juvenile diabetes" an outdated label.

And then, of course, there's the less scientific side.  When we refer to T1D as a "childhood" condition, what does that really mean?  Because the fact is, being diagnosed with T1D, no matter how good your support system is or what devices you use to manage your condition, is in many ways inherently a childhood-ending event.  There's a reason chronically ill kids get so tired of hearing about how "mature" we are.  It's not a choice; it's necessary for our survival.

I've told y'all before that when I was diagnosed, my parents and care team had the goal of making my condition as small a part of my life as they could.  But in retrospect, that was never really possible; in a sense, I stopped being a kid the moment that diagnosis was written on my chart.  In the years that followed, I existed in that strange in-between state that many of my fellow PWDs probably remember: a child carrying a bigger burden than many adults will ever face, constantly aware of the fragility of their own survival and their own responsibility to preserve it.

As a kid with T1D, you learn very quickly that the world isn't fair; for me, that was embodied in the process of accepting that for the first time, my twin, who had always been my equal, could do many things that I no longer could.  But more importantly, you learn that there are problems that you have to bear alone, that no amount of support from family or friends can completely fix.  My diagnosis gave me a new practical skill set, of course - how to calculate carb ratios and administer injections, how to tolerate pain and find my body's limits - but it also taught me how to hide my hurt, how to be brave when bravery really just means "live with this pain and don't complain about it."

I know it sounds like I'm being dramatic, and maybe I am.  But I was thinking the other day about how the last time anyone in my family saw me cry because of my condition was when I was 8 years old, and the last time I actually cried because of my condition was last week.  And I'm thinking now about how my endo's promise that my condition wouldn't stop me from doing anything was as much a condemnation as a reassurance, because the second half of the sentence was left unspoken: "T1D won't stop you because you won't let it."  So I spent my childhood learning how to not let it, no matter what the cost.  And that shaped me into someone very, very different from the child I was before April 21, 2010.

So the truth is, T1 shapes us, ages us, from the moment we become aware of it.  Its impact is the sum of countless recesses spent in the nurse's office, birthdays and holidays spent in hospital - but also of the quiet voice in our heads constantly reminding us that we have to do the jobs our own bodies can't do in order to stay alive. That's not exactly a "juvenile" thought, is it?

And regardless of the promises made to me during that first hospital stay, my condition has become a fundamental part of me in every way.  My perfectionism, the way I worry about the people around me, the way I hate asking for help and the way in which I approach problems - I don't know how much of each of these traits is inherent and how much is the mark that T1 has left on me, because it's impossible at this point to separate the two causes.  Would I be the person I am today if I'd had a normal childhood?  Probably not.  Would I be where I am today if I hadn't been forced to grow up overnight at 7 years old?  I doubt it.  So while there are times when I miss the innocence I didn't get to have, at moments like this, it all seems worth it.

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!

Mental Health

 Hey y'all!

Well, this is definitely the longest I've ever gone without posting.  Geez.  I don't really have an excuse, except, like... quarantine?  Life?  I don't even know.  I've been simultaneously busy and bored for the past seven months.  But here I am!

This post is one I've written and rewritten in my head several times.  It's also a topic I've addressed a bit in some of my other posts, because it's inextricably linked to T1D.  Any chronic condition, whether visible or invisible, has a profound effect on mental health, and T1 is no exception.  There are several factors at play here, so let's break them down a little.

*Trigger warning: This post deals with a lot of discussion about mental health issues, including anxiety, depression, and eating disorders.  Take care of yourselves y'all!*

First: The trauma of diagnosis.  This is one that's not discussed often, even within the DOC.  Many PWD are diagnosed at a young age, and most of the time that diagnosis doesn't occur until after they've gone into DKA and their organs are failing.  When I was diagnosed, I spent several days in the ICU, and as a 7-year-old who was terrified of needles and hated being sick (just like most kids), the whole experience was incredibly traumatic.  I still can't walk into Evanston hospital without getting flashbacks.  I still panic every time my brother says he's not feeling well.  That stuff stays with you long after you think you've moved on.

And then there's the whole "living with it" part.  Every single person with T1D knows the feeling of mental exhaustion that so often precedes burnout.  I once heard it described like this: Put your arms straight out in front of you, like you're reaching for something.  Hold that position for as long as you can.  Eventually, you reach a point where you wanna put your arms down, right?  Your muscles are tired; you want to relax.  Now imagine how it would feel if you could never break that position--or maybe you could, but it would have life-threatening consequences.

Ok, maybe not the most sophisticated metaphor.  But the point is, living with a chronic condition like T1D is exhausting, physically and mentally.  From the minute you wake up until the minute you go to bed, you have to make a conscious effort to keep yourself alive, not to mention enduring the physical pain of injections and infusions.  One study done by Stanford University found that people with T1D have to make an average of 180 extra decisions EVERY DAY as a result of their condition.  Yeah, you read that right.  Every day.  No break.  No rest.

As you can imagine, living with this constant stress puts PWD at a significantly higher risk for mental health issues like anxiety and depression.  Not surprising, if you think about it.  We have to make so many decisions every day, and each one could literally be the difference between life and death.  I know it sounds like I'm exaggerating--but y'all know I'm not.  Living with that mindset, never being able to relax, viewing new situations through a lens of danger--it's easy to see how that can lead to anxiety.

And of course, depression and burnout go hand in hand.  For those of y'all who don't know about burnout... it's one of the worst things a PWD can go through, and also one of the most common.  Burnout is the feeling of giving up, the feeling that even though you know you should check your blood sugar or take insulin, you just can't.  You know it's dangerous, you know you'll feel better if you do it, but you just don't care because you're so tired of being sick and tired of needles and stress and all of it.  Every PWD that I've known has faced burnout to some extent, though it's more severe for some than others.

There's also the feeling of being a burden--again, something that pretty much every PWD faces at some point.  Sometimes it happens when you look at your family's medical bills and think about how much you cost them every month.  Sometimes it happens when you can't engage in a social gathering because you're busy treating a hypo or taking insulin.  Sometimes it happens when a friend or partner tells you that they're worried about you, and your first reaction is guilt for hurting them.  That stuff weighs on you.

Anxiety and depression are some of the more common mental health issues faced by PWD, but they're certainly not the only ones.  Some folks with T1D develop a condition called "diabulimia"--a type of eating disorder--in which they deliberately skip insulin doses in order to lose weight.  Why does this happen?  Well, aside from the pressure our society places on young people to look a certain way, there's also the added stigma that comes along with T1D.  When a young adult has a condition that's so often mischaracterized as a "fat person's disease" (there are so many things wrong with this stereotype, btw), they may start to feel self-conscious about their weight.  That, combined with burnout, makes it all too easy for them to develop diabulimia.

So why am I writing about all this?  Well, to educate, I guess.  Y'all know I don't want any sympathy, but it's so important for non-PWD to be educated on this stuff.  T1D is an invisible illness, so we all--myself included--have a tendency to put on a brave face and hide our struggles at times.  Like, I got 2 hours of sleep last night because I was up till 4am with an urgent low and then woke up with another one at 6:30.  For me, that's just a day in the life, ya know?  But I'm sure my teachers and classmates were wondering why I seemed tired or unfocused.  I feel guilty on the days when T1D stops me from being productive or helpful, but there's nothing I can do about it, and a little patience from the folks around me goes such a long way.

And of course, I'm writing this for my amazing T1D family--my Pin Cushions, my Diabuddies, my CC19 delegates.  Whatever that voice in your head is telling you, you are perfect and worthy and not a burden.  And yeah, things will get better.  Trust me.  You're not alone.

CC19--One Year Later

Hey y'all!

One year ago today was the last day of Children's Congress 2019--the last day of the best 3 days of my life.  If y'all have known me for a while, you've most likely read all of my CC19 posts already; if you're new here, hey, go check them out! (Shameless plug? Me? Never.)

It's incredible how different things are right now compared to a year ago.  Over the past few months, I've thought a lot about how grateful I am that CC took place in 2019, because it never would've happened now.  Getting a bunch of immunocompromised kids together to meet with members of Congress?  Ain't no way that would be possible this year.  We're so lucky that we had that opportunity before the whole world shut down.

Looking back at CC19 brings up a lot of memories.  First and foremost--I feel an overwhelming amount of love for all of the friends that I met over those three days.  Kalli, Hannah, Bella, Carly, Claire, Adriana, Jackie, and so many others who I still keep in touch with.  The greatest part of having a condition like T1D is the instant sense of kinship that results from meeting others like us.  I'll never forget that night when a bunch of us walked around the city together--most of our bg levels were out of range, our pumps and CGMs were beeping, and we were having the time of our lives just being with each other.

Y'all remember that first night, when we all introduced ourselves onstage with our name, age, and diagnosis age?  I still haven't forgotten that.  It's a reminder that we're not alone, that even in a time when we all feel even more isolated and vulnerable than usual, there are others like us.  And we are so strong.

That brings me to the other emotion that fills me when I reminisce about my time at CC19: pride.  So much pride.  For the work that we did, for everything that we accomplished, for being brave enough to share our stories with members of Congress and remind them that we matter.  I remain in awe of the strength that every one of our delegates demonstrated that day on the Hill.  We were overheated, sleep-deprived, and scared out of our minds, and somehow we were able to sit down with the most influential people in the country and raise our voices for our cause.  Every single one of us was a superhero that day, and we remain superheroes every day.

I don't know what the future holds for us T1D folks.  I don't know what's gonna happen to the SDA, what's gonna happen to the price of insulin, what's gonna happen to us immunocompromised kids in a society that too often ignores our existence in favor of their own comfort.  But here's what I do know: we're unstoppable.  I learned that a year ago, and I haven't forgotten it.

Someday, when this is all over, I'll meet up with my CC19 family again.  In the meantime, I'm sending so much love to all of you.  Can't wait to watch y'all change the world (again)!

Adulting?

Hey y'all!

I know it's been a while since I posted... sorry about that.  I guess there's just not much to write about during quarantine, ya know?  I hope everyone's doing well and staying safe--we're all good here; I've left the house a few times recently but I'm still staying pretty isolated.

In other news... I just turned 18!  Ahhhh!  I still can't believe that I'm legally an adult. Technically speaking, not a lot changes between 17 and 18, but there's something mind-blowing about the realization that I'm not actually a kid anymore.

Of course, diabetes doesn't care that I'm 18! I went low twice the night of my birthday, and twice more the night after. (For those of you who haven't had the misfortune of hearing me rant about this yet, overnight lows are the bane of my existence.) And my birthday cake shot me up to 250, because of course it did.

Any PWD knows that adulting with T1D is a whole different kind of adulting. And since I'm now an "adult", I've been thinking about that a fair bit lately. Like... I'm going to college in a year, and with any luck, I'll be going somewhere far from home. As excited as I am to finally have a bit of freedom and independence, I'm also anxious about managing my T1D on my own. Obviously, people with T1 can be totally independent, and I have plenty of friends who have successfully transitioned to managing their condition on their own. But there's something disconcerting about it, because it's so easy to make a mistake when there's no one around to double-check for you.

Like, when I go to college, how will my roommate react to my Dexcom alarms?  Will I have to turn my phone off at night like I do at home?  What if my blood sugar goes low during a college exam and my teacher isn't willing to let me retake it?  Ugh.  I know these are things that every PWD deals with, but for some reason turning 18 makes them feel a lot more real.

In times like this, I'm more grateful than ever for the DOC. My Pin Cushion group chat, the people on TypeOneNation, and everyone else who has reassured me that it is possible to live independently without my T1D holding me back. There are so many amazing people who have offered advice and reassurance, and I have no doubt that when I go to college, those same people will be there to answer my questions and make me feel less alone.

And don't get me wrong--there's a lot that hasn't changed!  I'm on my parents' medical insurance until my 26th birthday, which is honestly such a blessing.  But as of the 14th, my parents can no longer view my medical records without my permission, and I can make treatment decisions without consulting them. (As though that's gonna happen, lol.)

So, bottom line--I'm an adult, kinda?  It's a work in progress.  But then again, with T1D, most things are a work in progress.

10 Years

Hey y’all!

I hope everyone’s doing well and staying safe!  Obviously things are... well... pretty crazy right now.  Thankfully everyone in my family is safe for now—though I am getting pretty tired of not leaving the house.

Today’s a pretty special day.  Some of y’all know this... but I haven’t talked as much about it this year as usual, because the circumstances aren’t exactly ideal, ya know?  So, for those who aren’t aware: today’s my 10-year diaversary.

Normally, I’d do something to celebrate—go out for dinner, maybe, or get ice cream with friends.  But this year even my family has forgotten about it, and I don’t really want to remind them.  We can’t do much to celebrate because we can’t leave the house.  In a lot of ways, it’s just easier to let them forget.  So I’m letting my emotions happen and trying to act like it’s a normal day.  But it’s not; it’s really really really not.

I’m feeling a whole lot of things, as I usually do on this day every year.  Lots of triumph, I think, because surviving a year with this condition is definitely something to be proud of, especially right now.  And pain, of course, because I’m remembering things that I usually try not to remember.  There’s so much I wish I could say to my 7-year-old self, that terrified little kid who couldn’t handle shots and had never slept in a hospital bed.  So since I’m stuck at home with all my feelings and not much else, I decided to write it all out.

Dear me,
    I know right now you’re more scared than you’ve ever been in your life, and probably more scared than you will ever be.  And I know if you understood everything that was happening to you, you would be so much more scared.  So hold on to that innocence with everything you have.
    I know today was the first time you saw your mom cry.  Whatever you do, don’t let yourself believe that it’s your fault.  She’s strong, and so are you.  You can’t internalize her pain right now.  You’ve got your own to work through.
    I know you’re keeping your pain inside right now.  That’s so hard, but it does get easier.  You’ll get used to holding back the tears until no one else can see.  For now, don’t be too hard on yourself when you break down.  Believe it or not, you’ll get used to that too.
    I know the amount of information you’ve been given today is overwhelming.  It’s ok if you can’t take it all in right now.  Listen to the doctors as much as you can, but when it gets to be too much, it’s ok to tune it out.  You’ll learn it quickly enough once you get home.  For now, savor the not knowing.
    I know you’re angry.  So, so angry.  But try to be kind to the people around you.  This isn’t their fault, any more than it’s yours.  There’s no one to blame for this, and that’s ok.
    I know you’re trying to cling to your old life.  At some point, you’re gonna realize things will never go back to normal.  The sooner you accept that, the sooner you’ll be able to adjust to your new normal.  Don’t be scared to let go of the past.
    And I know, more than anything, you’re afraid of the future.  Don’t be.  Things can only get better from here.  You will be ok.  We will be ok.  Keep breathing, keep moving even when it feels like you can’t.  You’re gonna get through this.  It will change you—that’s ok.  Let it.  It will make you a better person and more than that, it’ll allow you to help others in a way you never could otherwise.  Use this pain, let it shape you, let it become a part of you.  You’ll be better for it.
    Love, always and forever,
Abby
 

COVID-19

Hey y'all!

So.  Things are pretty messed up right now, obviously.  I hope everyone's doing ok, and staying safe and healthy and not dying of sheer boredom (quarantine is HARD, y'all).

The good news first: I'm healthy right now, and so is my family.  I'm so endlessly grateful for that.  I haven't left the house in a week, and it'll probably be a lot longer before I'm able to go anywhere or interact with anyone, and yeah, that sucks a little bit.  But I understand the importance of social distancing.

And here's the thing: If y'all have been following the news at all, you know teenagers generally aren't at a super huge risk of dying from COVID-19.  The media keeps using the same phrase: the only people who should be super concerned are "people who are elderly or immunocompromised".  And for most of y'all, that's a reassuring thought, right?  Like, obviously it's scary if you have an older family member and you're worried about them, but you yourself are safe.

Unless, ya know, you're not.  And for me--for all of the amazing PWD in my life--this is a pretty scary time.  Because technically, we are immunocompromised.  If we get COVID-19, our risk of complications is much higher than it would be for someone without T1D.

Now, why is that the case?  There are two reasons.  The first is that my lovely immune system is constantly busy attacking my pancreas.  It's like... ya know how if you have a cold or some other mild illness, it makes you more susceptible to getting sick with something else, because your immune system can't multitask very well?  Yeah, that's what my body is dealing with all the time.  Yay.  The other reason COVID-19 is dangerous for me is that if I do get sick, my blood sugar skyrockets.  We're talking 300s and 400s for days on end.  And in addition to being dangerous on its own, elevated bg also makes me more susceptible to infections--like pneumonia.

So, basically, if I get COVID-19 I'm automatically high risk.  That's nothing new--I'm used to being labeled "high risk" for pretty much everything.  But when we're talking about a novel coronavirus that no one knows how to prevent, it can feel sorta scary.

Because of that, I get really annoyed at people who aren't taking this situation seriously.  I've seen my friends and peers--people whom I admire and respect--ignoring social distancing warnings or making fun of those of us who are, in their eyes, "overreacting".  And as happy as I am that they're still having fun, I'm angry at their lack of understanding.

I've posted on here before about how T1D, and most chronic conditions like it, are invisible.  An invisible condition presents a unique set of challenges, and at a time like this, it makes things extra difficult.  No one looks at me and sees an immunocompromised person--they see a healthy teenager.

I guess my point is this: Even if you're lucky enough not to be immunocompromised, you are still a risk to the people around you.  You don't know whether the people you come into contact with are immunocompromised, or have a family member who is immunocompromised.  You don't know.  So please, please, stay home.  I know it sucks--trust me, I really do.  But by going out, you're putting people around you at risk.

To my fellow PWDs--hang in there.  Make sure you're stocked up on supplies (I know all the stores are out of alcohol swabs, so use those wisely; I'm rationing mine as strictly as I can).  Keep your head up, stay alert, take all the precautions, but don't let the fear take over.  We're gonna get through this together.  I'm here for anyone who wants to talk!

Stay safe, everyone.  Check in with the people around you.  Love y'all so much!

Let's get political!

Hey y'all!

Wow, it's been a super long time.  How's everyone doing?  I'm good--busy, of course, but good. (Happy tech week!  We're all slowly dying but it's fine.)

Now, many of y'all know that last month, I attended the Iowa caucus.  And I think all of you know--unless you, like, haven't been on the internet or spoken to anyone in the past several months--that the 2020 election is heating up, fast.  Now I'm not gonna endorse any candidates on here, but the issues of this election hit pretty close to home for a lot of PWD, so I'm gonna break them down here!

So obviously, one of the most crucial issues of this election is healthcare coverage.  Generally, the Democratic party is split into two opinions on the proper way to provide healthcare to Americans: Medicare for All, in which all private health insurance is replaced with one government-provided plan with no copays or deductibles, or a less radical plan which would allow people to keep their private plan or choose to opt into a government alternative.

So.  Copays and deductibles.  What are they? (other than the bane of my existence, lol.)
Copays--The baseline fee that you pay for a prescription, doctor's visit, etc.  These aren't always super high, but they add up incredibly quickly, especially for things like insulin.
Deductibles--Mhm.  These are... the worst.  Basically, you have to pay a certain amount every year before your insurance kicks in at all.  For people with a preexisting condition like T1D, deductibles are often super duper high.

If you have T1D or any other chronic condition, you know how screwed up our current healthcare system is.  I have friends who have to ration their insulin because their insurance wouldn't cover all the meds they needed.  I'm fortunate enough to have good health insurance, but even so, I'm well aware of the huge financial burden that T1D places on my family.  I also have to fight to receive coverage for the things I need to manage my condition.

I've spent the past several days locked in a battle with my insurance trying to get them to continue covering my CGM, and I've been struck by just how little they seem to care about helping me.  Like, I'm not tryna rant, but... this system ain't working.  I've wasted so many hours on the phone with this provider and that provider and my insurance company has no interest in working to figure it out.  And the thing is, my case isn't out of the ordinary.  Insurance companies care more about profit than they do about our lives.

Like I said, I'm not endorsing a political candidate or even a political ideology.  But I just want y'all do be aware that something needs to change.  Maybe you have strong feelings about this--maybe you don't.  But if you're lucky enough to not have to worry about being able to afford medication, or meet deductibles, of fight for a medical device that you need to survive... take a second to think about the rest of us.  And then go out and VOTE for whatever candidate you believe will do the best job of fixing this broken system.

This will be my first election in which I'm eligible to vote, and I'm so excited to make my voice heard and support whichever candidate I believe is the best choice for our country.  I hope all of you do the same!  Register to vote here: https://ova.elections.il.gov/
(Did this turn into a PSA?  Maybe.  But seriously y'all, voting is so important.  Also, Big Pharma sucks.  Ok byeeee)

Is there a “right age”?

Hey y’all!

I know, I know, I know.  It’s been AGES since I’ve posted.  Life has been crazy, ya know?  The only reason I’m posting right now is because I’m procrastinating on all the studying I should be doing for final exams.

So I saw a post on TypeOneNation this week that really got me thinking.  Many of y’all know that I spend a lot of time on that site, helping new PWD adjust to their diagnosis and answering questions from anyone who needs advice.  One of our new members this week, with whom I’ve been communicating quite a bit, is a mom whose teenage son was recently diagnosed.  Among her many questions was one that stuck out to me: Would things be better if her son had been diagnosed at a different age?

As y’all know, I was diagnosed at age 7.  That means that I was young enough to be completely helpless and overwhelmed with my condition—I relied on help from others for years afterward—but old enough to remember “normal” life.  Kinda right in the middle, getting the best and worst of both sides.

When I attended CC19 this past summer, I had the opportunity to meet kids who were diagnosed at 1, 2, and 3 years old.  Kids who have no memory whatsoever of a life before their condition.  And through my work in the DOC, I’ve met people who were diagnosed in their teenage years, or even older.  They’ve had to learn an entirely new way of life, something that—while it’s difficult at any age—is so much harder when you’re older and independent.

So what’s the ideal age to be diagnosed?  Is there even such a thing?  I suppose it depends on your perspective.  There have definitely been times when I’ve wished I didn’t remember my life before I was diagnosed... but there have also been times when I’m grateful that I was able to experience a “normal” life for so long.

I also see things from a parent’s perspective.  At CC19 I spent a lot of time with a 5-year-old boy who was diagnosed when he was 2.  I saw him checking his blood sugar, taking insulin, doing all the things I do every day—and it broke my heart because he’s so damn young.  I can’t imagine helping a kid adjust to a T1D diagnosis when they’re too young to understand what’s going on, too young to put on a facade of bravery like all PWD do when we’re old enough to keep our fear inside.

On the other hand, if you’re diagnosed young—really young—you never miss the life you had without your condition.  I went through every stage of grief when I was diagnosed—I think all of us did, if we were old enough to understand what was going on.  It would be nice, in a way, to grow up without the trauma that results from the memories of a T1D diagnosis.

So I don’t know.  I guess there’s never a good time to be diagnosed, because it’s gonna suck no matter what.  It’s a scary, dangerous, awful thing.  And whatever age you’re diagnosed, you’re always gonna wish it had been different: earlier, later, whatever.

If there’s one thing my time in the DOC has taught me, it’s that a diagnosis like this one brings out a strength that people don’t know they have.  Whether you’re a PWD or a parent of one, that diagnosis teaches you a new hopelessness and then a new hope.  And yeah, I know I said I wasn’t gonna get all emotional with this one, but if you’ve been through it, you know.

Stay tough, y’all.  The holidays are coming—my next post is probably gonna be about that.  In the meantime, I’m sending lots of love your way!

Finding a Cure

Hey y'all!  Hope everyone's having a great Diabetes Awareness Month!  Mine's going pretty well--although it does serve as a constant reminder that the vast majority of the world only knows/cares about Type 2. (Did anyone else see that NewSkokie article?  Made me so angry.  Sigh.)

Anyway--today's post is about something that, strangely enough, doesn't occupy as much of my thoughts as it did when I was younger, but is always in the back of my mind and the minds of most PWD.  It's gonna be a bit hard to write because of the emotional rollercoaster I'm gonna have to go on--but, of course, I have to share my journey with y'all.  Here goes.

When I was first diagnosed, there was a lot of talk about how my condition would affect me long-term.  Could I play sports?  Could I go to college?  Could I live on my own?  My parents had so many questions about my future, and I, sitting and listening to my new endo talking about complications and life expectancy, was confused.  Finally, I piped up with my little 7-year-old voice, still slightly raw from the days I'd spent screaming and crying in the hospital.  "None of that matters, though, does it?  There's gonna be a cure by then."

I don't know if my parents genuinely believed that the search for a cure was really in its final stages, or if they just said that to pacify me and keep me from completely breaking down in the aftermath of my diagnosis.  But whatever the reason, I spent the first several years after becoming a PWD thinking that "the cure" could arrive at any moment.  I distinctly remember doing my last insulin dose of the night and saying to my mom, "Maybe that'll be my last shot ever!  Maybe when I wake up, there'll be a cure!"

I didn't understand the look in her eyes when I said that.  Now I do.  I know that after I fell asleep that night, she stayed awake and cried, wondering how she was going to break the news to me: that while research for a cure was promising, there was no chance of finding something in the near future.

As it turns out, she didn't end up telling me.  Honestly, I'm not sure how I figured it out.  Part of it honestly came with the territory: as hard as you try to be positive with a condition like this, you can only endure it for so long before you start to lose that sense of hope and optimism.  Part of it, too, came from getting older, realizing that the stuff I dreamed of as a kid was unrealistic at best.  "The cure" died with Santa Claus and the Tooth Fairy, with the same innocence that got me through my traumatic diagnosis.

Here's what I know now: the idea of "finding a cure" is one that I gave up on long ago.  There's tons of promising research for T1D advancements, but none of it will be publicly available before 2025 or so, and some of it will probably take much longer than that.  Lots of the current research involves artificial pancreas systems, better pumps/cgms, and other tech that, while it makes our lives much easier, isn't really a "cure".

Do I think there will be a real, genuine cure someday?  Yes.  I had the opportunity to meet Dr Aaron Kowalski (President of JDRF) this summer, and one thing that stood out to me during our conversation was when he said, "I think when the cure comes, it'll actually be cures plural, as in more than one.  There isn't a one-size-fits-all answer to this condition.  We're working on multiple potential cures because we want people to have options, to find one that works best for them."

My takeaway from that exchange?  I'm not gonna have this condition forever.  There is gonna be, someday, a way for me to be free of Type 1.  But I've got a while before that day comes, and I'm slowly learning that while I can hold on to a little bit of hope, I can't waste my life waiting for someone to lift this burden.  I'm learning that life with T1D is still life, and like it or not, life requires living.  So that's what I'm doing.

I'm living my life for that 7-year-old girl, so tiny and scared in her hospital bed.  I'm living my life for every one of the tears and tantrums that followed.  I'm living my life for my parents, and their fear that I would never be what they wanted me to be.  I'm living my life for all the PWD who came before me, whose lives were so much harder than mine, and for all the ones who will come after, who will hold on to that naive hope as long as they can.  I'm living my life for my friends for whom the cure will come too late, whose condition took them too soon, through no fault of their own.  And yeah, I'm living my life for me: for the mountains I've climbed and the ones still in the distance.

Technology

Hey y’all!

I’m trying to post more since it’s Diabetes Awareness Month, but the occupational hazard of blogging more frequently is that I almost immediately run out of things to talk about. (Sigh.) So today’s post is going to be something a little different!  I’ve gotten a lot of questions about the different types of technology that I use to manage my condition.  This post is gonna cover the basic types, and I’ll also include my thoughts about why I’ve chosen the ones that I have.  Here goes!

Blood glucose monitors:
Obviously, the ability to monitor bg levels is one of the most crucial things that a PWD needs to survive.  Thanks to recent advances in tech, the options for glucose management have expanded a lot in recent years.  There are two main types of monitors: CGMs and manual glucometers.
Glucometers
For the first 6 years after my diagnosis, I relied on a manual glucometer to check my bg.  There’s several different brands, but they’re all pretty much interchangeable.  A glucometer kit consists of a lancet (which is used to prick the pad of the finger and draw blood), a container of test strips (where you place a drop of blood), and the meter itself (which reads the blood on the test strip and provides a number).  Glucometers are fairly reliable, but limited in their inability to show trends or predict where bg is heading.  They’re also pretty painful; I still have scars on my fingertips from years of drawing blood 10 times every day.
CGMs
I got my first CGM when I was 15 years old, and it completely changed my life.  A CGM, or Continuous Glucose Monitor, is a device worn on the body that sends bg readings to a phone or other receiver.  The CGM consists of a wire under the skin (the sensor) connected to a small plastic piece attached to the skin (the transmitter).  Mine, the Dexcom g6, provides readings every 5 minutes and also gives an arrow that shows which way my bg is going.  There are a few other brands, including Medtronic and Freestyle Libre, but most PWD that I know use Dexcom because it’s reliable, lasts a long time (I change the sensor every 10 days) and relatively easy to insert.

Insulin delivery methods:
Lots of PWD have different opinions about the best insulin systems.  There’s two main categories, but the options within those categories vary pretty widely.
MDIs
I’ve been on MDIs, or Multiple Daily Injections, since my diagnosis.  This means that I give myself an injection whenever I need insulin (either for food or high bg).  People who use MDIs can take their injection with either a pen or a syringe; I use syringes because the needle is smaller, but some folks prefer the convenience and safety of a pen.  MDIs are painful, but they work well for PWD who don’t want to wear a pump.
Pumps
There’s a whole bunch of different types of insulin pumps, but the basic operation is the same for all of them.  Similar to a CGM, pumps are worn 24/7, connected to the body through a narrow cannula.  The most popular pump brands include Medtronic, Tandem, and Omnipod—Omni is the only one that doesn’t have tubes; it’s a self-contained device, which is appealing to PWD who are involved in sports.  Pump sites are typically changed every 3 days.

I’ve been asked countless times why I make the choices I make in terms of which tech I use to manage my condition.  That’s a complicated question and, quite honestly, there’s no easy answer!  Every PWD chooses their devices for personal reasons.
In my case, I made the choice to switch to Dex because managing my blood sugar manually during the tennis season was super difficult.  Other folks might choose to switch because of high a1c levels, lifestyle factors, or even just because they’re tired of finger-pricks!
Y’all know I’m in the relative minority of PWD who choose not to wear a pump.  I have no doubt that I’ll get one someday.  But for now, the only one that appeals to me is the Omnipod, because I hate the idea of having tubes tethering me to a device.  Until the Omnipod is available for use in a closed-loop system, where the pump and CGM communicate and deliver insulin automatically... until then, it just isn’t worth it for me to have another device attached to me.

Bottom line: there are so many awesome tools that allow PWD to manage our condition in the way that works best for us.  Our tech is a personal choice and it’s undeniably a part of who we are.

Through A Window

Hey y'all!

So, uh... yeah, I really don't have an excuse for why it's been so long since my last post.  Just life, ya know?  School and tennis and homework and aaaah I'm super busy and I've neglected this little blog, which I feel really bad about.  I promise I'm gonna try to post more often now!  Let's jump right in, because I've got a lot to say today.

First of all--HAPPY DIABETES AWARENESS MONTH!  Yeah, you read that right: we get an entire month all to ourselves!  Pretty great, in my opinion.  Most of the talk this month will be geared towards people with T2D, since there's a whole lot more of them and they're generally an older demographic with a wider platform.  So here's a shoutout to all my T1 folks.  Y'all are amazing and strong and perfect and I love you and this community we share!

And that brings me to my other point for this post.  The DOC loves Diabetes Awareness Month, because it's a time when most of us feel something we don't feel very often: visible.  But there's a difference between feeling visible and feeling seen.  For PWD, that distinction becomes even more crystal-clear when the world starts talking about "diabetes prevention" through exercise and healthy diets and all the things that will never, ever, be relevant to our condition.  And when November ends and the rest of the world--even that small percentage that takes the time to care about Type 1 specifically--goes back to their ordinary lives, we're left just as alone as we were before.

Living with a chronic illness--any chronic illness--is profoundly isolating.  My family, my closest friends, even my care team who helps me manage my condition, will never know what it's like to live with this condition every day, just as I'll never understand the experiences of my friends who live with other chronic illnesses.  The thing that's impossible to convey about T1D is that it never goes away, never goes quiet or still, even for a second.  Between insulin doses and CGM checks, it's still here.

When I turned 9 years old, I made a secret wish.  I didn't tell anyone, not even my parents or my twin brother, because I knew my wish was impossible.  But when I blew the candles out on my pink-frosted cake, I wished that I could have just one day--just 24 short hours--without T1D.  One day of being normal.  One day of being free.

I'm still waiting for that wish to come true.  And in the meantime, I've found my condition putting up a wall between myself and everyone around me, isolating me in a world that they can never truly experience.  The wall comes up at random moments, catching me off-guard: on Halloween night, 46 and dropping fast while trick-or-treating with my friends, removed from the fun they were having while I silently struggled to stay on my feet.  Before a band concert, facing the internal struggle of whether or not to bring my med kit onstage with me, knowing I'll regret whatever choice I make because I'm choosing between my health and my momentary freedom.  Sometimes it's physically isolating, too, like standardized tests when I'm sent to a private room so I can keep my CGM turned on.  But all the time, whether I'm physically present or not, there's something keeping me separate from those around me, watching through a window that I can never break.

Don't get me wrong--I don't let T1D keep me from being happy.  More than half my life has been spent adapting to this condition and finding success despite it.  But ever now and then, I'm reminded that other folks don't have to haul around this particular burden the way I do.  Some of my amazing friends take the time to step into my world for a few seconds, asking about my bg levels and helping me when I need it, and that means more that I could ever express.  But in the end, the window stays closed.  It always does.

This year, during Diabetes Awareness Month, I'm asking y'all to reach out to your loved ones with T1D and take the time to listen.  And when the month ends, continue to listen, because our condition doesn't go away when the calendar changes.

To my fellow PWD--I love y'all more than you know.  You're not alone, even if it feels like you are.  Don't be afraid to tell the world what we face every single day.