Hey y’all!
I hope everyone’s doing well and staying safe! Obviously things are... well... pretty crazy right now. Thankfully everyone in my family is safe for now—though I am getting pretty tired of not leaving the house.
Today’s a pretty special day. Some of y’all know this... but I haven’t talked as much about it this year as usual, because the circumstances aren’t exactly ideal, ya know? So, for those who aren’t aware: today’s my 10-year diaversary.
Normally, I’d do something to celebrate—go out for dinner, maybe, or get ice cream with friends. But this year even my family has forgotten about it, and I don’t really want to remind them. We can’t do much to celebrate because we can’t leave the house. In a lot of ways, it’s just easier to let them forget. So I’m letting my emotions happen and trying to act like it’s a normal day. But it’s not; it’s really really really not.
I’m feeling a whole lot of things, as I usually do on this day every year. Lots of triumph, I think, because surviving a year with this condition is definitely something to be proud of, especially right now. And pain, of course, because I’m remembering things that I usually try not to remember. There’s so much I wish I could say to my 7-year-old self, that terrified little kid who couldn’t handle shots and had never slept in a hospital bed. So since I’m stuck at home with all my feelings and not much else, I decided to write it all out.
Dear me,
I know right now you’re more scared than you’ve ever been in your life, and probably more scared than you will ever be. And I know if you understood everything that was happening to you, you would be so much more scared. So hold on to that innocence with everything you have.
I know today was the first time you saw your mom cry. Whatever you do, don’t let yourself believe that it’s your fault. She’s strong, and so are you. You can’t internalize her pain right now. You’ve got your own to work through.
I know you’re keeping your pain inside right now. That’s so hard, but it does get easier. You’ll get used to holding back the tears until no one else can see. For now, don’t be too hard on yourself when you break down. Believe it or not, you’ll get used to that too.
I know the amount of information you’ve been given today is overwhelming. It’s ok if you can’t take it all in right now. Listen to the doctors as much as you can, but when it gets to be too much, it’s ok to tune it out. You’ll learn it quickly enough once you get home. For now, savor the not knowing.
I know you’re angry. So, so angry. But try to be kind to the people around you. This isn’t their fault, any more than it’s yours. There’s no one to blame for this, and that’s ok.
I know you’re trying to cling to your old life. At some point, you’re gonna realize things will never go back to normal. The sooner you accept that, the sooner you’ll be able to adjust to your new normal. Don’t be scared to let go of the past.
And I know, more than anything, you’re afraid of the future. Don’t be. Things can only get better from here. You will be ok. We will be ok. Keep breathing, keep moving even when it feels like you can’t. You’re gonna get through this. It will change you—that’s ok. Let it. It will make you a better person and more than that, it’ll allow you to help others in a way you never could otherwise. Use this pain, let it shape you, let it become a part of you. You’ll be better for it.
Love, always and forever,
Abby
Tuesday, April 21, 2020
Saturday, March 21, 2020
COVID-19
Hey y'all!
So. Things are pretty messed up right now, obviously. I hope everyone's doing ok, and staying safe and healthy and not dying of sheer boredom (quarantine is HARD, y'all).
The good news first: I'm healthy right now, and so is my family. I'm so endlessly grateful for that. I haven't left the house in a week, and it'll probably be a lot longer before I'm able to go anywhere or interact with anyone, and yeah, that sucks a little bit. But I understand the importance of social distancing.
And here's the thing: If y'all have been following the news at all, you know teenagers generally aren't at a super huge risk of dying from COVID-19. The media keeps using the same phrase: the only people who should be super concerned are "people who are elderly or immunocompromised". And for most of y'all, that's a reassuring thought, right? Like, obviously it's scary if you have an older family member and you're worried about them, but you yourself are safe.
Unless, ya know, you're not. And for me--for all of the amazing PWD in my life--this is a pretty scary time. Because technically, we are immunocompromised. If we get COVID-19, our risk of complications is much higher than it would be for someone without T1D.
Now, why is that the case? There are two reasons. The first is that my lovely immune system is constantly busy attacking my pancreas. It's like... ya know how if you have a cold or some other mild illness, it makes you more susceptible to getting sick with something else, because your immune system can't multitask very well? Yeah, that's what my body is dealing with all the time. Yay. The other reason COVID-19 is dangerous for me is that if I do get sick, my blood sugar skyrockets. We're talking 300s and 400s for days on end. And in addition to being dangerous on its own, elevated bg also makes me more susceptible to infections--like pneumonia.
So, basically, if I get COVID-19 I'm automatically high risk. That's nothing new--I'm used to being labeled "high risk" for pretty much everything. But when we're talking about a novel coronavirus that no one knows how to prevent, it can feel sorta scary.
Because of that, I get really annoyed at people who aren't taking this situation seriously. I've seen my friends and peers--people whom I admire and respect--ignoring social distancing warnings or making fun of those of us who are, in their eyes, "overreacting". And as happy as I am that they're still having fun, I'm angry at their lack of understanding.
I've posted on here before about how T1D, and most chronic conditions like it, are invisible. An invisible condition presents a unique set of challenges, and at a time like this, it makes things extra difficult. No one looks at me and sees an immunocompromised person--they see a healthy teenager.
I guess my point is this: Even if you're lucky enough not to be immunocompromised, you are still a risk to the people around you. You don't know whether the people you come into contact with are immunocompromised, or have a family member who is immunocompromised. You don't know. So please, please, stay home. I know it sucks--trust me, I really do. But by going out, you're putting people around you at risk.
To my fellow PWDs--hang in there. Make sure you're stocked up on supplies (I know all the stores are out of alcohol swabs, so use those wisely; I'm rationing mine as strictly as I can). Keep your head up, stay alert, take all the precautions, but don't let the fear take over. We're gonna get through this together. I'm here for anyone who wants to talk!
Stay safe, everyone. Check in with the people around you. Love y'all so much!
So. Things are pretty messed up right now, obviously. I hope everyone's doing ok, and staying safe and healthy and not dying of sheer boredom (quarantine is HARD, y'all).
The good news first: I'm healthy right now, and so is my family. I'm so endlessly grateful for that. I haven't left the house in a week, and it'll probably be a lot longer before I'm able to go anywhere or interact with anyone, and yeah, that sucks a little bit. But I understand the importance of social distancing.
And here's the thing: If y'all have been following the news at all, you know teenagers generally aren't at a super huge risk of dying from COVID-19. The media keeps using the same phrase: the only people who should be super concerned are "people who are elderly or immunocompromised". And for most of y'all, that's a reassuring thought, right? Like, obviously it's scary if you have an older family member and you're worried about them, but you yourself are safe.
Unless, ya know, you're not. And for me--for all of the amazing PWD in my life--this is a pretty scary time. Because technically, we are immunocompromised. If we get COVID-19, our risk of complications is much higher than it would be for someone without T1D.
Now, why is that the case? There are two reasons. The first is that my lovely immune system is constantly busy attacking my pancreas. It's like... ya know how if you have a cold or some other mild illness, it makes you more susceptible to getting sick with something else, because your immune system can't multitask very well? Yeah, that's what my body is dealing with all the time. Yay. The other reason COVID-19 is dangerous for me is that if I do get sick, my blood sugar skyrockets. We're talking 300s and 400s for days on end. And in addition to being dangerous on its own, elevated bg also makes me more susceptible to infections--like pneumonia.
So, basically, if I get COVID-19 I'm automatically high risk. That's nothing new--I'm used to being labeled "high risk" for pretty much everything. But when we're talking about a novel coronavirus that no one knows how to prevent, it can feel sorta scary.
Because of that, I get really annoyed at people who aren't taking this situation seriously. I've seen my friends and peers--people whom I admire and respect--ignoring social distancing warnings or making fun of those of us who are, in their eyes, "overreacting". And as happy as I am that they're still having fun, I'm angry at their lack of understanding.
I've posted on here before about how T1D, and most chronic conditions like it, are invisible. An invisible condition presents a unique set of challenges, and at a time like this, it makes things extra difficult. No one looks at me and sees an immunocompromised person--they see a healthy teenager.
I guess my point is this: Even if you're lucky enough not to be immunocompromised, you are still a risk to the people around you. You don't know whether the people you come into contact with are immunocompromised, or have a family member who is immunocompromised. You don't know. So please, please, stay home. I know it sucks--trust me, I really do. But by going out, you're putting people around you at risk.
To my fellow PWDs--hang in there. Make sure you're stocked up on supplies (I know all the stores are out of alcohol swabs, so use those wisely; I'm rationing mine as strictly as I can). Keep your head up, stay alert, take all the precautions, but don't let the fear take over. We're gonna get through this together. I'm here for anyone who wants to talk!
Stay safe, everyone. Check in with the people around you. Love y'all so much!
Sunday, March 8, 2020
Let's get political!
Hey y'all!
Wow, it's been a super long time. How's everyone doing? I'm good--busy, of course, but good. (Happy tech week! We're all slowly dying but it's fine.)
Now, many of y'all know that last month, I attended the Iowa caucus. And I think all of you know--unless you, like, haven't been on the internet or spoken to anyone in the past several months--that the 2020 election is heating up, fast. Now I'm not gonna endorse any candidates on here, but the issues of this election hit pretty close to home for a lot of PWD, so I'm gonna break them down here!
So obviously, one of the most crucial issues of this election is healthcare coverage. Generally, the Democratic party is split into two opinions on the proper way to provide healthcare to Americans: Medicare for All, in which all private health insurance is replaced with one government-provided plan with no copays or deductibles, or a less radical plan which would allow people to keep their private plan or choose to opt into a government alternative.
So. Copays and deductibles. What are they? (other than the bane of my existence, lol.)
Copays--The baseline fee that you pay for a prescription, doctor's visit, etc. These aren't always super high, but they add up incredibly quickly, especially for things like insulin.
Deductibles--Mhm. These are... the worst. Basically, you have to pay a certain amount every year before your insurance kicks in at all. For people with a preexisting condition like T1D, deductibles are often super duper high.
If you have T1D or any other chronic condition, you know how screwed up our current healthcare system is. I have friends who have to ration their insulin because their insurance wouldn't cover all the meds they needed. I'm fortunate enough to have good health insurance, but even so, I'm well aware of the huge financial burden that T1D places on my family. I also have to fight to receive coverage for the things I need to manage my condition.
I've spent the past several days locked in a battle with my insurance trying to get them to continue covering my CGM, and I've been struck by just how little they seem to care about helping me. Like, I'm not tryna rant, but... this system ain't working. I've wasted so many hours on the phone with this provider and that provider and my insurance company has no interest in working to figure it out. And the thing is, my case isn't out of the ordinary. Insurance companies care more about profit than they do about our lives.
Like I said, I'm not endorsing a political candidate or even a political ideology. But I just want y'all do be aware that something needs to change. Maybe you have strong feelings about this--maybe you don't. But if you're lucky enough to not have to worry about being able to afford medication, or meet deductibles, of fight for a medical device that you need to survive... take a second to think about the rest of us. And then go out and VOTE for whatever candidate you believe will do the best job of fixing this broken system.
This will be my first election in which I'm eligible to vote, and I'm so excited to make my voice heard and support whichever candidate I believe is the best choice for our country. I hope all of you do the same! Register to vote here: https://ova.elections.il.gov/
(Did this turn into a PSA? Maybe. But seriously y'all, voting is so important. Also, Big Pharma sucks. Ok byeeee)
So obviously, one of the most crucial issues of this election is healthcare coverage. Generally, the Democratic party is split into two opinions on the proper way to provide healthcare to Americans: Medicare for All, in which all private health insurance is replaced with one government-provided plan with no copays or deductibles, or a less radical plan which would allow people to keep their private plan or choose to opt into a government alternative.
So. Copays and deductibles. What are they? (other than the bane of my existence, lol.)
Copays--The baseline fee that you pay for a prescription, doctor's visit, etc. These aren't always super high, but they add up incredibly quickly, especially for things like insulin.
Deductibles--Mhm. These are... the worst. Basically, you have to pay a certain amount every year before your insurance kicks in at all. For people with a preexisting condition like T1D, deductibles are often super duper high.
If you have T1D or any other chronic condition, you know how screwed up our current healthcare system is. I have friends who have to ration their insulin because their insurance wouldn't cover all the meds they needed. I'm fortunate enough to have good health insurance, but even so, I'm well aware of the huge financial burden that T1D places on my family. I also have to fight to receive coverage for the things I need to manage my condition.
I've spent the past several days locked in a battle with my insurance trying to get them to continue covering my CGM, and I've been struck by just how little they seem to care about helping me. Like, I'm not tryna rant, but... this system ain't working. I've wasted so many hours on the phone with this provider and that provider and my insurance company has no interest in working to figure it out. And the thing is, my case isn't out of the ordinary. Insurance companies care more about profit than they do about our lives.
Like I said, I'm not endorsing a political candidate or even a political ideology. But I just want y'all do be aware that something needs to change. Maybe you have strong feelings about this--maybe you don't. But if you're lucky enough to not have to worry about being able to afford medication, or meet deductibles, of fight for a medical device that you need to survive... take a second to think about the rest of us. And then go out and VOTE for whatever candidate you believe will do the best job of fixing this broken system.
This will be my first election in which I'm eligible to vote, and I'm so excited to make my voice heard and support whichever candidate I believe is the best choice for our country. I hope all of you do the same! Register to vote here: https://ova.elections.il.gov/
(Did this turn into a PSA? Maybe. But seriously y'all, voting is so important. Also, Big Pharma sucks. Ok byeeee)
Wednesday, December 11, 2019
Is there a “right age”?
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!
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!
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.
Subscribe to:
Posts (Atom)