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!