Weakness

Hi y'all!

It's been a while since my last post, sorry about that!  Between school and tennis and more school, there hasn't been a whole lot of time for, ya know, literally anything else.  But a lot of stuff has happened lately and I wanted to get my thoughts out, so here goes.

So, first things first, I sorta momentarily blacked out on the tennis court on Friday.

It... sucked.  Normally I feel a low coming on pretty early, so I have plenty of time to get something to eat.  But Friday, all the symptoms hit at once--one second I was fine, the next second I was so dizzy I didn't know which way was up.  And then my vision got all dark and I somehow ended up lying on the ground.

When my vision cleared and the world righted itself slightly, the first thing I was aware of--other than the persistent pounding in my head--was that my entire team was surrounding me.  I was grateful, of course, that they cared enough to make sure I was okay, but I was also mortified.  I couldn't shake the feeling that they were unconsciously judging me, that their opinions of me were changing based on my apparent inability to make it through something as routine as a 2-hour practice.

I've been told, time and time again, that I shouldn't let people's opinions bother me so much.  And for the most part, I've gotten better at that.  Anyone with T1D--or any chronic condition, for that matter--has gotten good at dealing with the stares and the awkward questions from strangers in public.  But when the people in question are people I care about, it becomes a whole different situation.

I'm used to playing tennis while low.  I've played through practices and even entire matches where my blood sugar has remained below 70.  Is that a smart choice?  Definitely not.  I know it's dangerous to do things like that.  So why am I so reluctant to sit out?

Here's the thing: my brain is under the unquestionable impression that if my condition stops me from doing something, it automatically makes me weak.  And the last thing I want, ever, is to be perceived as weak because of a condition that I can't prevent or control.  Obviously, I know that doing something to take care of myself--even if it means sitting out of practice--isn't actually a bad thing.  But my fear of how people view that choice tends to override my need to deal with my health.

Which is why what happened on Friday made me so angry.  Angry at myself for letting it happen, angry that I hadn't felt it coming, angry that even if I had felt it, I probably would've kept playing and then it would've been even more my fault.  Most of all, angry because now my teammates and coach had a whole new reason to view me as a liability and a burden, instead of a valuable member of the team.

I guess this post is sort of a reminder--for myself, for all my fellow PWD and anyone with any chronic condition, mental or physical.  First of all: Whatever society tells us, whatever our brains are conditioned to believe, taking care of ourselves doesn't make us weak.  We deal with so, so, so much that normal people will never see or understand, and we are stronger because of--not in spite of--our challenges.

And second, we can't always control our conditions.  Sometimes, despite our best efforts, our conditions control us.  Sometimes we black out on the tennis court because that one unit correction took us from 270 to 40.  It happens.  And it's okay.  It's not a reflection of us, of how hard we try to keep our numbers in range, of all the work that goes on behind the scenes to prevent or delay the inevitable.  We are still good enough.  YOU are still good enough.

I love y'all.  Stay safe.  Thank you for being here--for me, for each other, for yourselves.  You're awesome.

Children's Congress Update #4

Hey y'all!

I'm so sorry that I haven't posted in so long.  I've been traveling a lot, working a lot, and trying to convince myself that school isn't about to start. (Spoiler alert: it is.)  But I've also spent that time mentally unpacking the overwhelming amount of events, accomplishments, and especially emotions that accompanied my trip to Congress.  This is my attempt to share all that with you guys.  Bear with me--it'll be long and kinda messy, but hopefully worth it!

It's been one month since the last day of Children's Congress.  One month since my day on Capitol Hill--the end of the best 3 days of my life.

Every second of my time at CC was amazing.  But one of the best things about it--one that I had looked forward to from the very beginning--was being surrounded by people who know what it's like to live with this condition every day.  Within minutes of meeting the other delegates, we had already formed a special bond unlike anything I've ever felt.

One of the most emotional moments of my entire experience happened on the very first night of the trip.  At dinner, after we were all finished eating, each delegate was called onstage to share their name, hometown, age, and age of diagnosis.  I was one of the first to speak, so afterward, I went back to my table to watch the rest of the intros--and I started crying.  My mom looked mildly concerned, and I wanted to reassure her that I was fine, but all I could say was "Mom--they're all just like me."

I never get to meet other PWD.  Seriously.  I mean, I have my Pin Cushions of course, and the DOC, and don't get me wrong, they're amazing.  But being surrounded by more than 150 other kids who know the ins and outs of daily life with T1D... I've spent a month trying to find the words to describe it, and I still can't.  The emotion came in the little moments, like sitting in a hill blitz training session, hearing a Dexcom alert, and realizing it wasn't mine.  Or walking around DC with a group of fellow delegates and comparing our blood sugars, trading low snacks and offering to share vials of insulin.

I could go on all day about my fellow delegates, and how amazing they were, and how humbled I was to be in such an incredible group.  But like I said in my last post, we weren't just there to have fun--we had a job to do.  And on the third and final day of CC, we got up at 5am (I wish I was exaggerating) and headed for the Hill.

The Senate hearing was so cool.  Senator Casey kept saying "diabeedus"... but other than that, it was perfect.  It was incredibly gratifying to see how much bipartisan support we have from the Senators, and watching my fellow delegates testify made me so proud.

My favorite part of the day, though, was the individual meetings--especially my first one, with Senator Dick Durbin.  We had been warned that many Senators would send staffers on their behalf and not actually attend the meeting, or that if we did meet a Senator in their office, it would only be for 5 or 10 minutes.  I spent 45 minutes in Senator Durbin's office, and he listened to every word I said.  He asked all the right questions and seemed to genuinely care about the reality of life with T1D.  And one week later, he introduced a new bill to cap insulin prices--and mentioned me in the interview.

All in all, every minute of CC19 was beyond what I could ever have imagined.  I made friends for life, and above all, we made a real difference.  I'm so proud to have been a part of that amazing group, and so excited to see what the future holds.

Children's Congress Update #3!

Hey y'all!!!

I'm writing this post from terminal 21 in O'Hare airport.  The big day is finally here!!!  The next couple days are gonna be super hectic (and hopefully productive!), so I just wanted to take a minute to get everyone up to speed before the craziness hits.

If you've been following me on any social media platforms, you've probably seen the latest step of my CC preparation: the social media contest!!  For this contest, each delegate was given a list of 40 photo challenges, each assigned a point value.  Challenges ranged from simple (in front of your school, 5 points) to difficult (speaking to a local community group about CC, 20 points).  The 3 delegates with the most points at the end of the day today will get a special prize!

Now, if y'all know me, you know I don't do anything halfway.  So when I got that list, i immediately decided that I was gonna do every single challenge.  And so far, with the help of my family and a few awesome friends (shoutout to my tennis team!), I've done just that!  I have a few more challenges to complete once I arrive in DC, but I'm pretty sure I'm gonna get that prize.

Along with the social media push has come a whole bunch of press.  I attended the JDRF annual chapter meeting, where I got a chance to speak about my story and my CC journey.  I was also featured on NBC news!  I'm so proud of all the awareness I've been able to raise in my community.

So, what comes next?  Like I said, the next few days are gonna be absolutely insane.  I'll arrive in DC around noonish today, and then spend the rest of the day meeting my fellow delegates and prepping for our mission.  Tuesday, we'll have a T1D Role Model panel with some amazing celebrity PWD, as well as Hill Blitz training to get ready to storm the Hill.  And Wednesday, I have 3 meetings with Congressmen and then a Congressional hearing!  Aaaaah!

In case y'all can't tell, I'm pretty hecking excited.  It's gonna be so much fun, but ultimately, I'm trying to remind myself that we're not there on vacation--I have a job to do.  My fellow delegates and I are there to advocate for the 1.5 million Americans who struggle with the realities of this condition every day.  And someday, when a cure is found--yeah, I'm saying when, and I don't usually say that--we're gonna be able to say, "we did that".

I'll be thinking of y'all on the Hill!  Keep sending your good vibes and support, it really means a lot.

Little Things

Hey y'all!

A lot has happened since I last posted.  I turned 17 (wow!) and spent a weekend at potentially the greatest leadership seminar ever to exist--more about that later.  I also got the results from my ultrasound: 1 cm of growth, which means there's no need for a biopsy!!!  I'm so relieved, and so grateful to all of y'all who sent supportive messages after my last post.

Most of this blog is dedicated to talking about the "big things" that T1D can do to a person's life.  The ways in which it can shape you, change you, and yeah, hurt you.  But lately I've also been reflecting on the little things--the ones that outsiders would never notice, and the ones that even PWD sometimes overlook.  See, when you live with a condition like this for as long as I have, it's easy to fall into a sort of pattern.  You expect certain things to happen, and when they do, you just ignore them because it's easier than getting upset.  But sometimes something happens to break that routine.

When I first arrived at the Illinois Leadership Seminar, I was a little anxious--and not just because I was in a group of complete strangers.  PWD know that when we're in a new situation, there's a lot to consider.  Meals without carb counts, random bursts of exercise, and oh yeah, the whole "no cell phones" thing.  Not to mention the fact that I was wearing Dex on my leg, where everyone could see it.  Nice.

I made it through the first day without really discussing my T1D with anyone (except my group leader, who gave me permission to use my phone without any sort of pushback--a miracle in itself).  But that night, we had a dance, and y'all know what that means: low bg.  By the time I stepped into the hallway to catch my breath, Dex was saying 58 and dropping fast.  Normally that wouldn't be a big deal, but my purse--and my emergency fruit snacks--were on the other side of the noisy, crowded room where the dance was being held.

Somehow, a girl in my group noticed that I was starting to panic, and asked what was going on.  I don't remember what I said (probably something along the lines of "blood sugar--low--food"), but next thing I knew she was grabbing my hand and pulling me through the crowd.  And then, get this--when we got to the corner and I grabbed a bag of fruit snacks, she stayed with me.  Didn't walk away, didn't turn to chat with someone else.  She stayed with me until I was done eating, and then asked if I was feeling ok.

T1D is exhausting on even the best of days, and a lot of that comes from the tiny details that see insignificant until they build up and overwhelm you.  But every now and then, someone does something that lifts a little bit of that burden off your shoulders.  They might not even realize they're doing it.  But to a PWD, those little gestures make a world of difference.

It's the friends who wordlessly offer you some of their food when they hear Dex beeping an urgent low.  It's those rare times when you pull out an insulin syringe and realize that for once, no one is staring at you.  It's the people who ask questions before making assumptions, the ones who care more about helping you than judging you.  It's meeting a fellow PWD in the wild and sharing that brief connection that runs deeper than anything else you've ever known.  It's the way my friends check on me after an endo appointment, the way my tennis teammates ask "what are you at?" before a match, the way random classmates will stand up to defend me when a teacher tries to give me a detention for checking Dex in school.

To everyone who's reading this, everyone who's made my fight against T1D easier in their own little ways--thanks.  Y'all mean more to me than you know.

Next time I post, I'll be getting ready to leave for Congress!  In the meantime, don't forget to comment, subscribe, and stay fabulous.  Love y'all!

Waiting Game

Hey y'all!  How's everyone doing?  Hope you're all having a great week.

Today's post isn't super positive, sorry about that.  Y'all know I usually try to keep things happy but like... I also want to be honest about life with T1D, and that means I'm not gonna keep this stuff from you.

But before we get started I wanna say happy Diabetes Awareness Week!!!  If you know a PWD, give them a hug this week!

Ok, here goes.
One thing that plenty of people know about T1D is that it comes with a whole host of complications.  Like, so hecking many.  Heart disease, blindness, loss of circulation, nerve pain, and generally shortened lifespan are the most common ones.  But that's not all, folks!  It also increases our risk of getting other autoimmune conditions. (yay.)

One fairly common condition that often goes hand-in-hand with T1D is thyroiditis.  Basically, there's this gland in your throat called the thyroid, and in people like me, it doesn't work.  That causes lack of appetite, lack of energy... lack of lots of important things.  I take medication to help with that, so it's really not a big deal.

But here's the killer: it also suuuuper increases my risk for thyroid cancer.  Like, I don't know the exact statistics because my doctor wouldn't tell me (if that's any indication), but I know my chances are pretty high.  In fact, I already have a tumor--they call it a "nodule" because it sounds more friendly--on the left side of my thyroid.

Two years ago, I had a biopsy done on the nodule, which was probably definitely the most painful procedure I've ever had.  Thankfully, it was benign (which means Not Cancerous).  But it still has the potential to become cancerous, which is pretty hecking scary.

So every year, I get an ultrasound to see whether the nodule has grown.  Last Friday, I went back to the hospital for my annual appointment with the grumpy folks in Ultrasound Room 1 (lemme tell you, there is nothing more awkward than being a teenage girl in an ultrasound clinic).  Here's how it works: if the nodule has gotten smaller or stayed the same size, it means I'm probably safe, so we'll wait another year and see what happens.  If it's grown--which, so far, has happened every year--we'll rebiopsy and see what's going on.

Like I said, I had my ultrasound done on Friday.  Today is Monday.  And still no results.

I'm... kinda going crazy with waiting.  You would think, by now, I would be used to waiting for results from the doctor's office.  But last year, I got the results the day of the ultrasound, so this wait is making me pretty anxious.

That's all I've got for today, folks.  Hopefully by tomorrow I'll be able to update y'all with the results--good or bad, anything's better than waiting.

Wisdom Teeth

Hey y'all!

This post is probably gonna turn into a bit of a rant.  Sorry not sorry, it's been a rough couple of days and I'm in a fair bit of pain so I'm not gonna censor my thoughts as much as I usually do.  I'll try to keep it friendly because I love y'all, but just a warning that I'm not really gonna sugarcoat this stuff.  Here goes.

As some of you may know (because, let's face it, I always complain about this stuff beforehand), I got my wisdom teeth out on Friday.  Not a fun experience for anyone, obviously, and extra not-fun for someone who hates going to the dentist for any reason whatsoever.  (Sidenote--Don't ask me why I get freaked out about stuff like that--you would think, considering I'm not exactly inexperienced with needles, that I would have no problem going to the dentist.  But there ya go.)

So, yeah, wisdom teeth.  Like I said--not fun.  El (my twin brother) and I got ours out on the same day, which came with its own mess of emotions and nerves.  But it also threw into sharp relief just how different our situations are.

Ya see, for El, the procedure--while quite scary--was pretty routine.  Sit in a chair, get an IV that knocks you out for an hour or so, wake up, go home and sit on the couch for a few days with a bowl of ice cream.  Now don't get me wrong, I'm not that naive--I knew my T1D would make the procedure trickier.  I was labeled "high-risk" from the moment I walked into the examining room.  But I didn't realize just how messy things were gonna be.

The first big hurdle was the anaesthetic.  I had never had general anaesthetic before, and the surgeon had no way of predicting how my body would react to it.  It was pretty scary to be told, flat-out, that if he knocked me out completely, he might not be able to wake me up again afterward.  Rather than taking that risk, he decided not to put me all the way under, opting instead to pump me full of painkillers as well as a smaller dose of anaesthetic and hope that I wouldn't remember much of the procedure afterward.  Sigh.

Sounds pretty scary, right?  Yeah, that wasn't the hardest part--not by a long shot.  When the surgeon was giving us all the information we needed for the week leading up to the surgery, he mentioned--somewhat casually--that we were absolutely not allowed to eat or drink for 10 hours before the procedure.

Yeah.  Not good.  My endo had told me that I should go into the surgery with my blood sugar at roughly 180, so that even if it dropped, I wouldn't be in danger.  But staying at 180 after 10 hours of no food... pretty much impossible.  I tend to drop like crazy overnight even on a normal day--usually I wake up below 80.  Not exactly an option here.

There's nothing scarier than looking at the clock and realizing you've reached a point where you're not allowed to treat a low.  Seriously.  That.... that just really sucked.  I worked super hard to figure out how much to cut my dinner insulin, my long-acting dose, etc, but the nerves and adrenaline meant that I had to eat 2 packs of fruit snacks just before the 10-hour mark.  My blood sugar shot up to 350, but by the next morning, it was down to 130 and I just had to go into the surgeon's office and pray that it wouldn't drop any more.

Fortunately (fortunately?), we were able to go ahead with the procedure.  The surgeon conveniently forgot to mention that the IV with the anaesthetic also contained 5% glucose, so by the time they moved me to the recovery room, I was up to 350 again, and rising fast.  Since then, it's been a battle to get below 200, since my body is essentially in a "crisis response" and my liver is pumping out a whole lot of glucose because it seems to think that'll help the situation.  And did I mention high blood sugar makes the risk of infection go wayyyy up?  Ugh.

I'm grateful that the surgery is done, and I'm grateful that the pain meds are helping at least a little bit.  But it was a bit of an eye-opener for me to see just how much T1D can complicate things.  Obviously I knew that my condition makes my life a bit trickier, but it's normal for me because for much of my life, I haven't known anything else.  So it was interesting to see just how much stress it can add, and how my family and I were sorta on our own to figure it all out.  There's probably a valuable lesson in here somewhere, but I'm not sure what it is, so for now I'm just gonna say: to all my T1D warriors out there, y'all are awesome.  It's not easy to do what we do every day.

Accommodations: Yes or No?

Hey y'all!

Two posts in one week?  Crazy!!!  I'm actually writing this one early and then keeping it in my drafts for a few days because, ya know, life happens.  I have a lot to say in this post, so bear with me, because it's gonna be pretty long.

Today's topic is one that causes a fair bit of controversy in the DOC, and one that's been a real struggle for me personally: accommodations.  Everyone has different opinions about this issue, so I thought I'd share mine since it's been particularly relevant in my life these past few weeks.  Here goes!

As many of you know, I'm kinda the worst about asking for help with anything; I'm independent and super stubborn, which usually means I handle things on my own even when I really shouldn't.  One thing that's difficult about living with a chronic condition is the whole "special treatment" thing.  God, I hate special treatment.  99% of the time, I'll do anything to avoid getting something "extra" or "different" from everyone else.  I'll take a test with low blood sugar rather than asking the teacher for extra time. (Pro tip, kids: don't do that.  It's not a good idea.)

But the thing about living with a condition like T1D is that sometimes, special treatment is completely necessary.  I've struggled with that for a really long time.  Recently, a friend of mine explained it in a way that changed my perspective: "Accommodations for PWD aren't giving them an unfair advantage over anyone else.  We have a natural disadvantage in most of the things we do, and accommodations just level the playing field."

For most of my life, I worked really, really hard to not need any special treatment.  Part of that was because of my own natural stubbornness, and part of it was because my parents always taught me that I should handle things on my own.  But then freshman year... happened... and I started to rethink things.  Some of my teachers (I won't name any names) wouldn't let me check my blood sugar during class or eat fruit snacks when I went low.  And then I took my first AP test, which was an experience in and of itself.  I wasn't allowed to bring any food or medication, and I had to fight tooth and nail to be allowed to bring my Dexcom receiver into the room.  I was at 300 the entire test because I was scared to overcorrect.  After that, I realized that something had to change.

At the start of sophomore year, I got a 504 plan.  It lets me check my blood sugar whenever I need to, eat and drink during class, and go to the nurse without a pass.  Most importantly, it gives me CollegeBoard testing accommodations, which include stop-the-clock breaks for when my blood sugar goes low.  I have to test in a separate room, which can be sorta frustrating, but it's so much easier to focus on my test when I don't have to worry so much about what my blood sugar is doing.  This year, I took 2 AP exams as well as PSATs, and while the system was far from perfect, it made a huge difference to be able to focus only on my test rather than my blood sugar.

So, my opinion on accommodations?  Sometimes, however difficult it can be to ask for them, they're completely necessary.  I've had people accuse me of "cheating" or asking for "special treatment", and there was a time when I would've almost agreed with them, but ultimately my 504 just enables me to compete at the same level as everyone else, even when my body is doing its best to keep that from happening.  PWD face a lot of challenges--as does anyone living with a chronic illness--and it's important to take advantage of resources that can reduce those challenges.  Stay strong, my fellow PWD.  We got this!
(That's all for today, folks.  I'm getting my wisdom teeth out next week, so my next post will probably be about that.  Aaaaaaaaaaaah)