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)