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!
Wednesday, December 11, 2019
Friday, November 15, 2019
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.
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.
Thursday, November 7, 2019
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.
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.
Sunday, November 3, 2019
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.
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.
Sunday, September 15, 2019
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.
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.
Saturday, August 10, 2019
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.
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.
Monday, July 8, 2019
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.
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.
Wednesday, June 26, 2019
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!
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!
Monday, June 10, 2019
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 wasprobably 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.
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
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.
Sunday, June 2, 2019
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.
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.
Sunday, May 26, 2019
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)
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)
Thursday, May 23, 2019
Children's Congress Update #2!
Hi everyone! Happy summer!
I had my last day of finals yesterday (yay!) and I'm so happy to be on summer vacation. Of course, you all know what that means... we're on a countdown to Children's Congress! A lot has happened since I last posted, so let me fill y'all in. (I was planning to post about some other stuff, but we'll save that for later. I'll hopefully be posting more often now that it's summer.)
Last month, I completed my Delegate Scrapbook, which was actually 3 separate books--one for each politician I'll be meeting with. If you know me, you know I measure like a -10 on the scale of artistic talent and creativity, so this one was a real struggle for me. Like, no joke, I had to google "scrapbooking for dummies" on more than one occasion, often at ungodly hours of the night.
But after several late nights, missed homework assignments, and trips to Michael's for craft supplies, I was able to finish and mail all 3 books (a total of 16 pages)! I learned a lot about art stuff--namely, that I have no capacity for it whatsoever, and that whoever said scrapbooking is "relaxing" has clearly never worked under a deadline.
My most recent assignment was to write 3 identical letters--one for each member of Congress who I'll be meeting--to formally request an appointment to meet with them while I'm in DC. That one was much easier, and I'm pretty proud of the fact that I finished a full 2 weeks before the deadline. The letters are more of a formality than anything, but I was still pretty nervous about writing something that'll be read by the people who literally decide my future. I ended up rewriting like 50 drafts because, ya know, I'm a perfectionist. (Or an incompetent writer. Or both. You decide.)
The next step is my favorite, but also the scariest: PRESS! We're sending out press releases within the next week, working with our local JDRF chapter to coordinate interviews on radio, tv, etc. Chicago's a bigger news market than the ones most other delegates are working with, so it's a bit of a challenge to set everything up, but I'm so super excited to share my story with a bigger audience!
Next time I post about CC, it'll probably be when we're getting ready to leave for the airport! In the meantime, don't forget to keep an eye on #JDRFCC19. I'll try to post later this week--there's some other stuff going on and I can't wait to share my thoughts about everything!
Love y'all!
I had my last day of finals yesterday (yay!) and I'm so happy to be on summer vacation. Of course, you all know what that means... we're on a countdown to Children's Congress! A lot has happened since I last posted, so let me fill y'all in. (I was planning to post about some other stuff, but we'll save that for later. I'll hopefully be posting more often now that it's summer.)
Last month, I completed my Delegate Scrapbook, which was actually 3 separate books--one for each politician I'll be meeting with. If you know me, you know I measure like a -10 on the scale of artistic talent and creativity, so this one was a real struggle for me. Like, no joke, I had to google "scrapbooking for dummies" on more than one occasion, often at ungodly hours of the night.
But after several late nights, missed homework assignments, and trips to Michael's for craft supplies, I was able to finish and mail all 3 books (a total of 16 pages)! I learned a lot about art stuff--namely, that I have no capacity for it whatsoever, and that whoever said scrapbooking is "relaxing" has clearly never worked under a deadline.
My most recent assignment was to write 3 identical letters--one for each member of Congress who I'll be meeting--to formally request an appointment to meet with them while I'm in DC. That one was much easier, and I'm pretty proud of the fact that I finished a full 2 weeks before the deadline. The letters are more of a formality than anything, but I was still pretty nervous about writing something that'll be read by the people who literally decide my future. I ended up rewriting like 50 drafts because, ya know, I'm a perfectionist. (Or an incompetent writer. Or both. You decide.)
The next step is my favorite, but also the scariest: PRESS! We're sending out press releases within the next week, working with our local JDRF chapter to coordinate interviews on radio, tv, etc. Chicago's a bigger news market than the ones most other delegates are working with, so it's a bit of a challenge to set everything up, but I'm so super excited to share my story with a bigger audience!
Next time I post about CC, it'll probably be when we're getting ready to leave for the airport! In the meantime, don't forget to keep an eye on #JDRFCC19. I'll try to post later this week--there's some other stuff going on and I can't wait to share my thoughts about everything!
Love y'all!
Sunday, April 28, 2019
Endo visit!
Hi y'all! How's everyone doing?
Life has been pretty hectic lately, but I'm stealing a bit of time to post because, ya know, who needs homework anyway? (I'll probably do 2 posts this week because there's a lot to talk about. We'll see how much sleep I'm willing to sacrifice.)
If you have T1D, or have a friend with T1D, you know the overwhelming mix of emotions that accompanies every endocrinologist visit. And if you don't have much experience with T1D, then you're probably pretty confused because that word looks way too big to actually have a real meaning.
Basically, an endocrinologist is a special doctor who cares for patients with T1D and other endocrine (hormonal) issues. Most PWD go to the endo every 3 months. While we're there, we get our A1C checked (more about that in a minute) and discuss how our blood sugar trends are looking. If you're responsible about managing your condition and your blood sugar is in control, endo visits aren't too scary. But if you're someone like me who sometimes conveniently forgets to check Dex for a few hours or so, they can be a liiiiiittle intimidating.
The most important thing about every endo visit is getting your A1C. That's basically a measure of what your blood sugar has been over the past 3 months. In a non-PWD, A1C should be about 5.5. For a PWD, it's supposed to be anywhere under 7.5, although I try to keep mine lower. This time, it was 6.2--exactly the same as my previous one, which made me pretty happy.
I'm lucky to have pretty much the greatest care team on the planet. I've worked with 3 different endos in my 9 years of T1D, and my current one is by far the best--he's always super positive and has really great suggestions for improving my ratios and keeping my blood sugars where they should be. He handles all topics, even the scary ones, with the same rational calmness that helps keep me from freaking out.
All in all, I'm happy with how my endo visit went. I didn't have to get any blood work done--we're saving that for the summer--so that was a huuuge relief. (You would think I wouldn't mind blood work by now, but here we are!) I did find out that I have to get some other tests done (more about that in my next post) but I'm not gonna think about that for a while.
Hope y'all have a great week!
Life has been pretty hectic lately, but I'm stealing a bit of time to post because, ya know, who needs homework anyway? (I'll probably do 2 posts this week because there's a lot to talk about. We'll see how much sleep I'm willing to sacrifice.)
If you have T1D, or have a friend with T1D, you know the overwhelming mix of emotions that accompanies every endocrinologist visit. And if you don't have much experience with T1D, then you're probably pretty confused because that word looks way too big to actually have a real meaning.
Basically, an endocrinologist is a special doctor who cares for patients with T1D and other endocrine (hormonal) issues. Most PWD go to the endo every 3 months. While we're there, we get our A1C checked (more about that in a minute) and discuss how our blood sugar trends are looking. If you're responsible about managing your condition and your blood sugar is in control, endo visits aren't too scary. But if you're someone like me who sometimes conveniently forgets to check Dex for a few hours or so, they can be a liiiiiittle intimidating.
The most important thing about every endo visit is getting your A1C. That's basically a measure of what your blood sugar has been over the past 3 months. In a non-PWD, A1C should be about 5.5. For a PWD, it's supposed to be anywhere under 7.5, although I try to keep mine lower. This time, it was 6.2--exactly the same as my previous one, which made me pretty happy.
I'm lucky to have pretty much the greatest care team on the planet. I've worked with 3 different endos in my 9 years of T1D, and my current one is by far the best--he's always super positive and has really great suggestions for improving my ratios and keeping my blood sugars where they should be. He handles all topics, even the scary ones, with the same rational calmness that helps keep me from freaking out.
All in all, I'm happy with how my endo visit went. I didn't have to get any blood work done--we're saving that for the summer--so that was a huuuge relief. (You would think I wouldn't mind blood work by now, but here we are!) I did find out that I have to get some other tests done (more about that in my next post) but I'm not gonna think about that for a while.
Hope y'all have a great week!
Sunday, April 21, 2019
My Story
Hey y'all!
Today is my 9th diaversary--9 years ago today, I was officially diagnosed with T1D. Today's full of a lot of emotions for me, and I figure the best way to work through those is to write down the thing that keeps running on repeat through my mind: my diagnosis story. I've never written it all out before, so bear with me; it'll be kinda messy. (Also--mild trigger warning for mentions of illness/hospitals. Stay safe, kiddos.)
When I was a kid, I thought I was invincible. I had a supportive family, an easy life, and a can-do attitude. There were no problems that couldn't be solved, and I knew it. I was independent and so, so stubborn. I thought I could do everything on my own.
So when I got sick, I didn't tell anyone. Heck, I didn't even let myself believe that I was really sick. I just went about my day, ignoring the persistent feeling that something was horribly wrong. When my mom asked me if I was feeling ok, I blamed my lack of appetite and energy on other things--school, stress, I don't really know. I lasted nearly a month before she figured out that I was hiding it. And even when she confronted me, I swore I was fine. Did I really believe that? I'm not sure. But thank God she saw through it and called the doctor.
Quite honestly, I've blocked out much of the days that followed. I know that on Wednesday, April 21, my mom picked me up from school and took me straight to the doctor's office. I know that we went from there to the hospital. I remember crying, and I remember my mom crying. If I try, I can uncover other memories. Doctors hooking me up to machines and monitors. My dad walking into my hospital room and then immediately walking out, covering his face with his hands. There's more, too, that I'm still not able to think about, even 9 years later. Looking back at the papers in my medical records, I've learned that when I was diagnosed, I had lost 30% of my body weight and my organs were shutting down. But I don't know how much of that I knew at the time.
I don't remember who explained my condition to me. I don't remember how long it took me to fully process how my life had changed. I do remember being angry--I, the kid who was infamous at the doctor's office for throwing a tantrum every time I needed a shot, now depended on needles to keep me alive? It didn't feel fair, and in my mind, that made it wrong.
Looking back, I think the reason it took me so long to adjust was because I kept waiting for things to go back to normal again. Obviously, that never happened. In the first year after my diagnosis, I cried all the time. I couldn't wrap my brain around the concept that this was forever. Childish, yes, but probably natural.
It's been 9 years. More than half my life. Quite honestly, I don't know who I would be without this condition. It's impossible at this point to separate me from my diabetes. That scares me a little, but in a weird way, I'm grateful for it. My condition has made me the person I am today. Has it made me better? I think so. I was forced to grow up pretty quickly when I was diagnosed, and that experience taught me a lot. It's led me to make new friends and to appreciate the ones who stuck with me after everything changed.
But more than that, T1D has taught me not to take life for granted. I've known people who didn't survive long enough to be diagnosed. I've known people who survived diagnosis, only for the condition to claim their lives later, when they least expected it. But I'm still here, and even if I don't know why, I intend to keep going until I figure it out.
Today is my 9th diaversary--9 years ago today, I was officially diagnosed with T1D. Today's full of a lot of emotions for me, and I figure the best way to work through those is to write down the thing that keeps running on repeat through my mind: my diagnosis story. I've never written it all out before, so bear with me; it'll be kinda messy. (Also--mild trigger warning for mentions of illness/hospitals. Stay safe, kiddos.)
When I was a kid, I thought I was invincible. I had a supportive family, an easy life, and a can-do attitude. There were no problems that couldn't be solved, and I knew it. I was independent and so, so stubborn. I thought I could do everything on my own.
So when I got sick, I didn't tell anyone. Heck, I didn't even let myself believe that I was really sick. I just went about my day, ignoring the persistent feeling that something was horribly wrong. When my mom asked me if I was feeling ok, I blamed my lack of appetite and energy on other things--school, stress, I don't really know. I lasted nearly a month before she figured out that I was hiding it. And even when she confronted me, I swore I was fine. Did I really believe that? I'm not sure. But thank God she saw through it and called the doctor.
Quite honestly, I've blocked out much of the days that followed. I know that on Wednesday, April 21, my mom picked me up from school and took me straight to the doctor's office. I know that we went from there to the hospital. I remember crying, and I remember my mom crying. If I try, I can uncover other memories. Doctors hooking me up to machines and monitors. My dad walking into my hospital room and then immediately walking out, covering his face with his hands. There's more, too, that I'm still not able to think about, even 9 years later. Looking back at the papers in my medical records, I've learned that when I was diagnosed, I had lost 30% of my body weight and my organs were shutting down. But I don't know how much of that I knew at the time.
I don't remember who explained my condition to me. I don't remember how long it took me to fully process how my life had changed. I do remember being angry--I, the kid who was infamous at the doctor's office for throwing a tantrum every time I needed a shot, now depended on needles to keep me alive? It didn't feel fair, and in my mind, that made it wrong.
Looking back, I think the reason it took me so long to adjust was because I kept waiting for things to go back to normal again. Obviously, that never happened. In the first year after my diagnosis, I cried all the time. I couldn't wrap my brain around the concept that this was forever. Childish, yes, but probably natural.
It's been 9 years. More than half my life. Quite honestly, I don't know who I would be without this condition. It's impossible at this point to separate me from my diabetes. That scares me a little, but in a weird way, I'm grateful for it. My condition has made me the person I am today. Has it made me better? I think so. I was forced to grow up pretty quickly when I was diagnosed, and that experience taught me a lot. It's led me to make new friends and to appreciate the ones who stuck with me after everything changed.
But more than that, T1D has taught me not to take life for granted. I've known people who didn't survive long enough to be diagnosed. I've known people who survived diagnosis, only for the condition to claim their lives later, when they least expected it. But I'm still here, and even if I don't know why, I intend to keep going until I figure it out.
Sunday, March 24, 2019
Children's Congress Update #1!
Hey y'all!
This is gonna be a bit of a shorter post because writer's block has made a permanent home inside my brain, so I'm just gonna tell y'all a bit about CC. This is going to be the first of several CC posts over the coming months as we get ready for the Big Week. But I'm getting ahead of myself. Let's backtrack a little.
For those of you who don't know, JDRF (an awesome organizations dedicated to treatment, prevention, and cures for T1D) holds an event every 2 years called Children's Congress (or CC). 150 kids and teens from the US are selected to travel to Washington, DC in July and meet with members of Congress to tell our stories and ask for funding for research. It's a BIG deal. And this year, after 2 unsuccessful applications, I was selected to be a member of Children's Congress!
Being a CC delegate is a lot of fun, but it's also a lot of work. Over the next few months, I'll complete a series of projects to prepare for my trip to DC. A few weeks ago, I got my first assignment: my delegate video! Basically, I have to make a 1-2 minute video introducing myself and discussing how T1D has affected me. Easy, right?
Ya know, the funny thing about an assignment like that: You look at it and you think "oh, that looks fun! I'll be able to do that super quickly!" And then you wait a few weeks because school doesn't allow time for anything. And then everyone else starts publishing their videos and you're like, "Wait a second, I have no clue how to introduce myself! What are words? How do I English?"
Long story short, I recruited my amazing brother (shoutout to El even though he doesn't read my blog) to help. We've spent the past week or so filming short standups in various places around the city, and today we're editing and putting it all together. (Or rather, he is. I'm at work, writing my blog and texting him pictures of bunnies to help him focus.)
Within the next week or so, my CC delegate page will (hopefully) go live! When it does, I'll make sure to post it here. In the meantime, feel free to go to cc.jdrf.org to see a bunch of cool stuff from the last Children's Congress.
Have a good spring break everyone!! Me and my writer's block are gonna go finish that video now.
Oh--a question for y'all: Should I post my CC application letter on here? Is that something people do on blogs? Is that something y'all wanna see? Does anyone even read this blog, or am I talking to myself? Comment below!!!
This is gonna be a bit of a shorter post because writer's block has made a permanent home inside my brain, so I'm just gonna tell y'all a bit about CC. This is going to be the first of several CC posts over the coming months as we get ready for the Big Week. But I'm getting ahead of myself. Let's backtrack a little.
For those of you who don't know, JDRF (an awesome organizations dedicated to treatment, prevention, and cures for T1D) holds an event every 2 years called Children's Congress (or CC). 150 kids and teens from the US are selected to travel to Washington, DC in July and meet with members of Congress to tell our stories and ask for funding for research. It's a BIG deal. And this year, after 2 unsuccessful applications, I was selected to be a member of Children's Congress!
Being a CC delegate is a lot of fun, but it's also a lot of work. Over the next few months, I'll complete a series of projects to prepare for my trip to DC. A few weeks ago, I got my first assignment: my delegate video! Basically, I have to make a 1-2 minute video introducing myself and discussing how T1D has affected me. Easy, right?
Ya know, the funny thing about an assignment like that: You look at it and you think "oh, that looks fun! I'll be able to do that super quickly!" And then you wait a few weeks because school doesn't allow time for anything. And then everyone else starts publishing their videos and you're like, "Wait a second, I have no clue how to introduce myself! What are words? How do I English?"
Long story short, I recruited my amazing brother (shoutout to El even though he doesn't read my blog) to help. We've spent the past week or so filming short standups in various places around the city, and today we're editing and putting it all together. (Or rather, he is. I'm at work, writing my blog and texting him pictures of bunnies to help him focus.)
Within the next week or so, my CC delegate page will (hopefully) go live! When it does, I'll make sure to post it here. In the meantime, feel free to go to cc.jdrf.org to see a bunch of cool stuff from the last Children's Congress.
Have a good spring break everyone!! Me and my writer's block are gonna go finish that video now.
Oh--a question for y'all: Should I post my CC application letter on here? Is that something people do on blogs? Is that something y'all wanna see? Does anyone even read this blog, or am I talking to myself? Comment below!!!
Sunday, March 17, 2019
15 things you should NEVER say to a PWD
Hey y'all! It's been a minute since I've posted anything (tech week was pretty hectic). Hope everyone's doing ok!
This post is gonna double as a sort of PSA/rant. I try not to rant *too* much about stuff like this, but people make some pretty misguided comments and it can get frustrating. So here's a short-ish list of things that PWD are tired of hearing. (And yes, these are all things that I've actually had people say to me.)
1. "But you don't *look* diabetic!"
Wow, thanks. Not only is this pretty insulting to people who do have T2D, it's also promoting the stereotype that all PWD (including Type 1) are overweight.
2. "My grandma's sister's daughter's husband has diabetes, and he had two toes amputated/lost a kidney/went blind/died."
This one is twofold. First of all, unless you have a close relative or friend with Type ONE, or some sort of story that relates to our situation, we probably don't care all that much. Second, you really don't need to tell us about all of the terrifying complications that T1D causes. I promise, we've heard them all a million times.
3. "Ya know, if you just try this miracle pill/cinnamon/new exercise plan, it'll cure your diabetes!"
Nope. T1D has no cure. Seriously. I don't care what you heard in that infomercial--there is no cure.
4. "You shouldn't be eating that. It'll make your diabetes worse."
Sigh. That's not how T1D works. And regardless, it's not really your job to tell me what I can or can't eat. I've been living with this condition for a pretty long time; I think I know how to handle it.
5. "I could NEVER inject myself!"
Good for you, I guess? News flash: If I don't take insulin, I die. So I don't really have much of a choice.
(Side note: this is even worse if you say it to a mom. "I could never give my kid a shot!" It's really hard for parents to give their kids injections, and comments like that just make them feel worse. So just don't say it.)
6. "Can't you just stop eating sugar?"
No. No, I can't.
7. "At least it's not cancer."
People say this about a lot of chronic illnesses, T1D included. And guess what? As grateful as I am that I don't have cancer, it doesn't make T1D any less difficult to deal with. All chronic conditions suck. It's a fact.
8. "Wait, you're still diabetic?"
Again--THERE. IS. NO. CURE.
9. "Do you have to do that here? I don't like looking at needles."
Look, I'm sorry that you don't like seeing me take my lifesaving medication, but I'm not gonna put my health on hold for your comfort. Look away if you have to; I don't mind. But don't ask me to make accommodations for you.
10. "Does it hurt?"
I'll be honest--this one doesn't bother me as much as some of the others, because there are times when the person asking is genuinely curious. But I mean... it's a needle. Of course it hurts. Common sense, y'all.
11. "You should get an insulin pump instead of taking injections."
Again, this one might be well-meaning. But every PWD handles treatment differently, and there are countless reasons why some of us choose MDIs over a pump. Chances are we've already discussed it with our care team, so your "advice" probably isn't gonna change our minds.
12. "Aren't you worried about *insert morbid complication here*?"
Yes. Every PWD knows the risks of living with this condition. But talking about it isn't gonna change anything; it's just gonna remind us of the dangers we're facing.
13. "Do you have the good type or the bad type?"
Guys. No. This is a chronic illness we're talking about. There is no "good type".
14. "If you hadn't eaten so much sugar as a kid, you wouldn't be a diabetic."
Just... keep your mouth shut. Please. Even if this *was* true, which it's NOT, what's the point of saying it? As it is, you're just kinda making yourself look stupid.
(Also--don't refer to a PWD as "a diabetic". Some of us are ok with the term; most of us are not. You're reducing us to just our condition. When in doubt, say "person with diabetes".)
15. "Oh, your blood sugar is high. What did you do?"
There are so many factors that contribute to high or low blood sugar, and plenty of them are outside our control. Scolding a PWD for their blood sugar is a surefire way to make them feel worse. We're doing our best to manage a condition that's really, really difficult to live with. If something goes wrong and we end up with a number we don't like, the last thing we need is someone telling us it's our fault.
(Just one last note: If you've said this stuff in the past, I'm not blaming you. I realize most people don't know a lot about T1D, and it's easy to get confused and say the wrong thing. I'm glad y'all are reading this and hopefully learning a lil something! Please comment below if I missed anything or if you have any questions/reactions.)
This post is gonna double as a sort of PSA/rant. I try not to rant *too* much about stuff like this, but people make some pretty misguided comments and it can get frustrating. So here's a short-ish list of things that PWD are tired of hearing. (And yes, these are all things that I've actually had people say to me.)
1. "But you don't *look* diabetic!"
Wow, thanks. Not only is this pretty insulting to people who do have T2D, it's also promoting the stereotype that all PWD (including Type 1) are overweight.
2. "My grandma's sister's daughter's husband has diabetes, and he had two toes amputated/lost a kidney/went blind/died."
This one is twofold. First of all, unless you have a close relative or friend with Type ONE, or some sort of story that relates to our situation, we probably don't care all that much. Second, you really don't need to tell us about all of the terrifying complications that T1D causes. I promise, we've heard them all a million times.
3. "Ya know, if you just try this miracle pill/cinnamon/new exercise plan, it'll cure your diabetes!"
Nope. T1D has no cure. Seriously. I don't care what you heard in that infomercial--there is no cure.
4. "You shouldn't be eating that. It'll make your diabetes worse."
Sigh. That's not how T1D works. And regardless, it's not really your job to tell me what I can or can't eat. I've been living with this condition for a pretty long time; I think I know how to handle it.
5. "I could NEVER inject myself!"
Good for you, I guess? News flash: If I don't take insulin, I die. So I don't really have much of a choice.
(Side note: this is even worse if you say it to a mom. "I could never give my kid a shot!" It's really hard for parents to give their kids injections, and comments like that just make them feel worse. So just don't say it.)
6. "Can't you just stop eating sugar?"
No. No, I can't.
7. "At least it's not cancer."
People say this about a lot of chronic illnesses, T1D included. And guess what? As grateful as I am that I don't have cancer, it doesn't make T1D any less difficult to deal with. All chronic conditions suck. It's a fact.
8. "Wait, you're still diabetic?"
Again--THERE. IS. NO. CURE.
9. "Do you have to do that here? I don't like looking at needles."
Look, I'm sorry that you don't like seeing me take my lifesaving medication, but I'm not gonna put my health on hold for your comfort. Look away if you have to; I don't mind. But don't ask me to make accommodations for you.
10. "Does it hurt?"
I'll be honest--this one doesn't bother me as much as some of the others, because there are times when the person asking is genuinely curious. But I mean... it's a needle. Of course it hurts. Common sense, y'all.
11. "You should get an insulin pump instead of taking injections."
Again, this one might be well-meaning. But every PWD handles treatment differently, and there are countless reasons why some of us choose MDIs over a pump. Chances are we've already discussed it with our care team, so your "advice" probably isn't gonna change our minds.
12. "Aren't you worried about *insert morbid complication here*?"
Yes. Every PWD knows the risks of living with this condition. But talking about it isn't gonna change anything; it's just gonna remind us of the dangers we're facing.
13. "Do you have the good type or the bad type?"
Guys. No. This is a chronic illness we're talking about. There is no "good type".
14. "If you hadn't eaten so much sugar as a kid, you wouldn't be a diabetic."
Just... keep your mouth shut. Please. Even if this *was* true, which it's NOT, what's the point of saying it? As it is, you're just kinda making yourself look stupid.
(Also--don't refer to a PWD as "a diabetic". Some of us are ok with the term; most of us are not. You're reducing us to just our condition. When in doubt, say "person with diabetes".)
15. "Oh, your blood sugar is high. What did you do?"
There are so many factors that contribute to high or low blood sugar, and plenty of them are outside our control. Scolding a PWD for their blood sugar is a surefire way to make them feel worse. We're doing our best to manage a condition that's really, really difficult to live with. If something goes wrong and we end up with a number we don't like, the last thing we need is someone telling us it's our fault.
(Just one last note: If you've said this stuff in the past, I'm not blaming you. I realize most people don't know a lot about T1D, and it's easy to get confused and say the wrong thing. I'm glad y'all are reading this and hopefully learning a lil something! Please comment below if I missed anything or if you have any questions/reactions.)
Sunday, February 24, 2019
DiaDictionary
If you’ve ever met a person with T1D, you’ve probably realized that we kinda have our own language. (Like, seriously. It took ages before I could turn to my friends and casually say “I’m high” without getting weird looks.) But if y’all are gonna be reading my blog, then I guess it would probably be good to give you a crash course in T1D slang. Some of these words are basic T1D things, and others are quirky terms that I’ve heard from other folks with T1. Enjoy! (And feel free to comment below if I missed any!)
Cured:
Said in frustration when the most precise carb counting leads to a completely unexplainable low, as though my body somehow started making its own insulin again.
“How am I still below 60? I must be cured.”
Dex:
Short for Dexcom, my continuous glucose monitor (CGM). I was going to come up with an actual name for her, but in addition to lack of insulin, I apparently suffer from a chronic lack of creativity, so she’s Dex.
“Dex is beeping again. I must be going low.”
Diabeedus:
Usually said in the most mocking or sarcastic tone possible, this word is used to make fun of the frustrating misconceptions of T1D, and the people who insist on promoting them.
*sarcastically* “I can’t eat any sugar because I have Diabeedus. I need to try one of those miracle cures, like cinnamon or diet pills!”
Diabuddy:
A friend who also happens to have T1D. Diabuddies often meet through the DOC, although they do occasionally find each other in the wild. No matter their differences, diabuddies share an unbreakable bond.
“My diabuddies are my best friends, even though I haven’t met some of them face-to-face.”
Dia- (prefix):
Applied to any word when diabetes impacts said word. Examples include “diafail” and “diawin”.
“I completely forgot to dose for that cupcake. Diafail!”
Do a check:
Another way of saying “check blood sugar”. This term tends to be used in reference to manual blood sugar checks (rather than a CGM), but it can be used for either.
“I’m not feeling great. I should probably do a check.”
DOC:
Short for Diabetes Online Community. A group of several websites and blogs (like this one!) where PWD can talk and share their struggles and triumphs.
“When I’m having a bad blood sugar day, there’s always someone in the DOC to make me feel better.”
Double Down:
When the arrow on my CGM indicates that I’m dropping very, very quickly (more than 100 mg/dl in half an hour). Usually cause for alarm.
“Oh boy, I’m 86 double down. Better get something to eat!”
Double Up:
When the arrow on my CGM indicates that I’m going up very, very quickly (more than 100 mg/dl in half an hour). Similar to Double Down. Also usually cause for alarm.
“I forgot to dose for dinner and now I’m 226 double up. Yeesh.”
Free food:
Food that doesn’t have any carbohydrates (or a very small amount), so I can eat it without taking any insulin. Examples include meat, cheese, and most vegetables.
“I’m super hungry but I don’t feel like doing insulin, so I’m grabbing some free food.”
Gummies:
My personal favorite fix for low blood sugar. Usually Welch’s fruit snacks. If my mom texts me the word “gummies”, I know it means Dex is dropping and I need to eat.
“I couldn’t get above 60 last night… I had 3 packs of gummies and it still wouldn’t go up!”
Gusher:
When a finger prick (see Old-Fashioned) results in a geyser of blood rather than just one drop.
“Grab a paper towel--we’ve got a gusher!”
Hangover:
The headache, light sensitivity, and general icky feeling that I get in the morning after an overnight low. Hangovers can occur at any time during the day if the low is severe enough, but they’re most common in the morning.
“Do you have any Tylenol? I have such a hangover from last night’s 47.”
MDIs:
Short for Multiple Daily Injections. While some PWD wear insulin pumps, others, like myself, choose to take insulin through MDIs.
“I was on MDIs for years before I started on OmniPod.”
Number:
Blood glucose level. The word “number” no longer has any other meaning. Seriously.
“Hey, can I get your number?” “97 and dropping.”
Old-Fashioned:
Using a lancet and glucometer to check blood sugar manually, rather than using Dex.
“Dex kept giving me a signal loss error, so I had to check the old-fashioned way.”
Poker:
The needle used for old-fashioned glucose checks.
“Ugh, I dropped my poker and now I need to change the lancet.”
PWD:
Person/people With Diabetes. I only ever use this to refer to folks with Type 1, but it can be used for T2.
“Every PWD is different, but we’re all frigging awesome.”
Rebound:
Overtreating a low or high reading often leads to a spike in the opposite direction. Rebounds are the bane of my existence.
“From 279 to 53 in one hour… I hate rebounds.”
Roller Coaster:
One of those days when no matter how hard I try, my blood sugar won’t cooperate, resulting in a graph that looks like it belongs at Six Flags.
“I’ve had 2 lows and 4 highs today. What a roller coaster.”
Sideways Down:
When the arrow on my CGM indicates that I’m going up or down slowly (50 mg/dl in half an hour).
“182 sideways down. Not too bad.”
SWAG:
Short for Scientific Wildly Accurate Guess. All PWD are familiar with these--although not all of us are very good at them.
“I have no idea how many carbs are in that pizza. Oh well, guess I’ll SWAG it.”
Tsunami:
Rather than treating a low with a rational portion of fast-acting carbs, sometimes I just sorta eat everything in my vicinity. This leads to a tsunami, or a severe rebound high.
“I ate an entire pizza when I was low, and now I’ve got a tsunami of 293.”
Twilight Zone High:
When my blood sugar goes high for no reason. Like, literally no reason.
“I haven’t eaten all day and I’m at 251! Now that’s what I call a twilight zone high.”
Unicorn:
Those rare, glorious days when the Dexcom graph stays inside the lines (no highs or lows). When a PWD says they’re “chasing a unicorn”, it means they haven’t had any high or low numbers yet that day. Also called a no-hitter.
“It’s 4:00 and I haven’t gone out of range yet! I’m chasing a unicorn!”
YDMV:
Short for Your Diabetes May Vary. Something one PWD says to another when giving advice or sharing experience.
“Pretzels always make me go high, but YDMV.”
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