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.
Friday, November 15, 2019
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.
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