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!
Wednesday, June 26, 2019
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.
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