Diabetes Awareness Month 2018

Photography by Talya Shai

This is the month where many of us in the Type 1 community inundate our Facebook friends, our Instagram and Twitter followers, and our blog readers with information about Type 1 Diabetes.

And some people might get annoyed with us. But you know what? That’s too bad, because the world is so full of false information about Type 1 that every single person who is telling the world the truth makes a difference. Or at least that’s what I believe.

Diabetes isn’t a “sexy” disease, as people would say. Nope. It’s stigmatized with much of the world thinking we gave it to ourselves by eating too much sugar, that it’s a “fat person” disease, and many more misconceptions that are incredibly damaging to Type 1s.

Explaining to the world that this disease can hit anyone, at every time, is important. People need to know that it can happen to your parents, your friends, your siblings, or yourself. And though it’s commonly diagnosed in children, it’s diagnosed in adults too! It happens to athletes, lawyers, tiny children, and your everyday person. It doesn’t matter your size, your shape, your weight, your age... it can come and hit anyone like a freight train. Because it’s an autoimmune disease and unfortunately there’s nothing to do to stop it and there’s no cure. This is why we fight so hard and make so much noise.

So, to my fellow T1Ds, here’s to making a ton of noise this month! May the awareness begin!

Week 1 With My FreeStyle Libre

I decided to do a little log of my first week with my FreeStyle Libre trial kit. Knowing my skin is super sensitive and I react to most adhesives, I was nervous, but hopeful! Here's how it went.


Freestyle Libre Day 1:
Skin feels fine. Not itchy at all, barely notice it.

Day 2:
Pretty sure I really like this thing.

Day 3:
I'm finding that it's a little bit off, my actual BG when I test is usually about 1 mmol higher than my Libre says. But I find I can trust the arrows. They've been accurate and they're making a difference for me.. I mean.. it's so cool knowing if your blood sugar is going up or down or shooting up or shooting down. Mind blown.

Day 4:
I almost ripped off my sensor taking shirt off yesterday. There had to be a first time. It is such a weird feeling knowing what my blood sugar's doing all the time. Before I was on the dark.. I mean.. all I knew was the number when I tested. Now I can see it's stable, I can go nap without worrying that I'm going low.. technology is cool.

Day 5:
Finding it pretty generally accurate. For example, scanned this afternoon at 6.4 and straight arrow, but I felt like I was going low. Guess I was wrong because I scanned again half an hour later and it was 6.2. I am slowly giving this thing my trust.

Day 6:
Magically it's still not irritating my skin, and I'm kind of in love with it. I've noticed the sides of the adhesive are starting to peel up a tiny bit. Still trying to adjust to knowing whether my blood sugar is going up and down and how to compensate for it. Still haven't been asked what it is by any strangers, or if I'm trying to stop smoking.

Day 7:
It wins. Freestyle Libre wins. Only 1/4 of the way through my starter kit and I'm decided. I feel lucky to be able to have it. My skin still has no irritation. Like I said another day, the arrows are always right! The numbers might be a mmol off, but it's never too off. Sometimes it's off my 0.1 mmol/L! Showed it to my nurse today at my saline infusion and she thought it was the coolest thing ever. I still think it is too.


In conclusion: It's a keeper. As someone who is way behind and uses syringes (not even pens) for my insulin, this is my first real piece of Diabetes technology and I couldn't feel luckier to have it.

10 Kids Thriving with Type 1

After meeting some of the coolest kids ever during the conference in the summer, and after being introduced to some of them by social media, I knew I had to write this article. They are brave. They aren't fearless, but they face their fears. They show Diabetes who's boss, even though they're pint-sized.

Mason

Mason, who just turned 7, was diagnosed with Type 1 when he was 3 years old. His mom and dad help him raise awareness on Instagram and Facebook by sharing their Type 1 journey. He and his mom actually made an awareness video on Facebook that pulled in 50,000 views! He even takes time to educate his class at school by showing comic book slides made by his momma.

It was the 4th of July when Mason ate an entire bowl of tortilla chips and mom’s first instinct was that he has diabetes. She took her to the doctor, who ignored her suspicions, despite her insisting on testing. By the next day, he couldn’t even hold his head up, so he was rushed to the ER where he was diagnosed within 30 seconds.

His favourite things to do naturally include fighting with his little sister, going to parties, playing video games, drawing and swimming. When his blood sugar goes low, his favorite snack is cotton candy because it melts so quickly in his mouth! Never thought of this, so smart!

I asked Mason if he could tell the whole world one thing about Diabetes, what would it be?  He says, "You do not get diabetes from eating sugar. Also I can do anything other kids can do, and maybe even better!"

You can follow him on Instagram @1mightytype1family.

Jalaeny

9 year old Jalaeny was diagnosed 4 years ago, at age 5 with Type 1 Diabetes. 

During her kindergarten year she began to wet the bed. Her mom started limiting her liquids around bedtime, but she would still beg for more. During a short 15-minute grocery trip, she had to use the bathroom twice! Her mom brought her into the doctor and right away they tested her blood sugar... it was 560 mg/dL/31.1 mmol/L! 

Jalaeny loves to have fun making slime, and making music videos with her friends. She's plenty busy with fundraising and fun with Type 1 Diabetes friends. She does the JDRF walk, goes to Diabetes camp in the summer, and attends the Children's with Diabetes Friends For Life conference in the summer. When her blood sugar goes low, she likes to snack on Starburst! She's proud that she can do anything anyone else can do, with the help of her Dexcom and Omnipod!

I asked Jalaeny if she could tell the whole world one thing about Diabetes, what would it be?  She says, "If I'm at a birthday party I can have a piece of cake!"

You can follow her on Instagram @mrs._fred.
 

Elise

10 year old Elise is a pro at T1D.. she was diagnosed 2 days after her first birthday at her 12 month check up! Her family does the JDRF walks in multiple cities (Dallas, Lisbon, Toronto and NYC), and she goes to Lions camp. She's also part of the Bionic Pancreas clinical trial. When her blood sugar goes low, her favorite snack are Hi-Chews, and some of her favorite activities include reading, writing, playing soccer, and playing with her American Girl doll. 

She is super proud to be the youngest kid to try the Bionic Pancreas in 2014. Not only that, but this year she published her own book at the age of 9! 

I asked Elise if she could tell the whole world one thing about Diabetes, what would it be?  She says, "That you can do anything, even if you have it..." 

You can follow her at www.teamelise.com. 

Logan 

10 and a half year old Logan has quite the impressive resume. After his MMR Vaccine he was sick with a fever for a few days. Shortly after, he started drinking a lot of water, and he was barely eating. He was also sleeping in in the mornings, so that was their sign to call the pediatrician. Luckily, they have a great medical team who recognized the symptoms right away. 

Diagnosed at only 17 months, he has thrived with Type 1 in amazing ways. Again, at 10 years old, these are all the things he’s fundraised for: Friends for Life, Riding on Insulin, JDRF Promise Ball, JDRF 5K Endurance Team, Beyond Type Run 5K. This past year, it was also because of Logan's initiative that everyone at the Friends for Life conference got Mickey Bars! He also says he’s a Beyond Type 1 Bike Beyond groupie. I say he's a go-getter.

This guy’s got a lot of hobbies. He collects coins, baseball cards, stuffed animals, stamps, Disney pins, hot wheels, and many more. He also likes Monster Trucks, Lego, art, traveling, biking, and lots of stickers! When he goes low, his favourite snacks are cookies, but most of the time mom makes him have juice.

Logan is proud that we have a Type 1 community and he's not just a “lone dog”. He also says he’s proud that he’s able to fundraise and help educate his family and friends.

I asked Logan if he could tell the whole world one thing about Diabetes, what would it be? "I want the world to know what it is so I don’t have to explain it to people all the time and then everyone can help find a cure."

You can follow him on Instagram @elbowbumpkidsmom.

Brenley 

3 year old Brenley is quite the little force. She was diagnosed with Type 1 at just 2 1/12 years old. Brenley’s parents knew something was wrong. Red flags started popping up. She was potty trained at 21 months but she kept having accidents, which wasn't like her at all. Then quickly came the extreme thirst and the dark circles under her eyes. 

Brenley is 3, and will be turning 4 November 7th. On April 14th, 2016, her mom took her to her pediatrician and expressed her certainty that she had Type 1. Labs were taken, and then came the call… she had a glucose level of almost 600 mg/dL/33.3 mmol/L, and they rushed her straight to the children’s hospital.

Little did they know the 7 months later they’d be hit with another curveball. Brenley was diagnosed with cancer. A Stage 3 Rhabdoid Tumor of her left kidney. She just completed her treatment, and in the near future they’re looking forward to taking part in a bunch of Diabetes and Cancer events.

This sassy girl is “absolutely obsessed” with Bruno Mars. It is how they got through mostly everything in the last year. They listen to his music almost all day and she loves having dance parties. When Brenley's mom asks her what she's most proud of, she says "I'm stronger than anyone!"

She’s discovered her favourite low-carb snack; organic cucumbers and baby carrots with Greek yogurt ranch dip. Sounds good to me!
 
I asked Brenley if she could tell the whole world one thing about Diabetes, what would it be?  She says, "I would want them to know how it feels to have a low blood sugar." 

You can follow her on Instagram @type1.brenley. 
 
Tre

You don’t want to mess with 8 year old Tre, he’s a karate pro! Only 2 weeks after turning 5 on April 7th, 2014, Tre was diagnosed with Type 1 Diabetes. He had a few symptoms like fatigue, thirst, and frequent urination, but they were cleared (and obviously misdiagnosed) by the doctor, so they were given the go ahead to go to Florida for vacation. The second day there, mom Melinda knew something wasn’t right and took him to the ER. Turns out he had a blood sugar of 879 mg/dL/48.8 mmol/L, his a1c was 13.9%, and he was in severe DKA! Mom knows best.

Tre is captaining for Beyond Type 1’s Power Up 2017 campaign, and this year they just walked in their 4th JDRF walk, which is always a fun day for them. Tre’s family participates in many online campaigns to support T1D awareness, and loves connecting with other families. Next up on their to do list… Diabetes camp!

Apart from loving Karate, some of Tre’s favourite things to do are playing Minecraft and building Lego masterpieces. His favourite low snack is snack apples and peanut butter, and he says that what makes him proud is “Breaking boards in karate makes me proud because it's kind of hard, but I did it!”

I asked Tre if he could tell the whole world one thing about Diabetes, what would it be?  He says, "I would want the world to know that it's not the best and it's hard sometimes, but type 1 diabetes makes you strong and brave. In time, it gets a little easier to deal with." 

You can follow him on Instagram @melinda_t1dmom.

Eva and Leah 

Eva and Leah are Type 1 twins! Having just turned 2 in September, the girls, and their parents sure are fighters! Leah was diagnosed first. She was 10 months old when she went into DKA and came close to losing her life. Only 9 months later, they tested Eva’s blood sugar and were able to catch it before she got really sick.

As a family, they do the JDRF One Walk, and in the summer, they attend the Children With Diabetes Friends For Life Conference.

In their spare time, they love to jump on things. We might have little chefs on our hands because they love to cook in their play kitchen. They also love to play dress up and color.

When their blood sugar goes low, their favorite snack is cookies. I asked what makes them proud and dad Geordan told me at the moment it was putting on their own socks and doing things for themselves.

I asked Eva and Leah's parents,  "If they could tell the whole world one thing about Diabetes, what would it be?  They said, "Diabetes is an epidemic, it could happen to anybody; especially Type 1.  We need more research on this disease."

You can follow them on Instagram eva_rose_leah_skye.
 
Henry

Henry is a feisty 10 year old who was diagnosed in 2013. He was diagnosed on February 7th, the same day as one of his favourite people, celebrity chef Sam Talbot was diagnosed! He was going to the bathroom a lot. Then one night he ate pizza and he was up peeing and drinking all night! In the morning, he told mom Sara that he didn’t want to go to school and right away she knew there was something wrong. So she brought him to the hospital and that day he was diagnosed with Type 1. Henry thought that he was going to lose his legs because of it, since he only knew about someone with Type 2 who didn’t take care of themselves.

Henry fundraises for Beyond Type 1, and he says it’s because of this; “They give 100% of the donations back to do things like help kids who are new to Diabetes and just want to get out of the prison the diabetes can make you feel like you are in.” This is part of the reason he loves helping his mama out with her Beyond Type 1 work. He says that Type 1 Diabetes camp is best for kids who don’t know anyone with Type 1, but that he knows a lot of kids with T1D, so he didn’t like it very much.

Some of his favourite things to do are to swim, draw, read, write, and to taekwondo. He got asked what makes him feel proud and his response was “I don’t know what makes me feel proud. Maybe I always feel proud so I don’t know when it’s happening.” Smart kid!

I asked Henry  "If you could tell the whole world one thing about Diabetes, what would it be?"  He said, "I want the whole world to know that no one needs to be afraid, its just something that happens and there are people like me that can help you feel less scared."
 
You can follow him on Instagram @sarabeejensen or @herculesandhenry.



  Isabella

7 year old Isabella (or Isa for short) was diagnosed only 2 weeks before her second birthday, on August 28th, 2012. Mom and dad started noticing some of the classic signs of T1D (thirst, wetting the bed, etc.), then one day her teacher sent a note home asking them to send in a bottle for her because she was always asking for something to drink. It was an immediate red flag, so they took her to the pediatrician, who recognized the symptoms right away and did a urine test.

Isa loves getting involved in the community. She’s a Beyond Type 1 Ambassador and got to walk the stage with Nick Jonas when he received his HERO Award at the Radio Disney Music Awards. She loves going to the CWD Friends for Life conference, and this summer was her 5th year! This fall she’ll participate in her 6th JDRF walk, with a team of over 100 people walking with her! She also had the opportunity to represent North Ohio as a 2015 JDRF Children’s Congress and helped them show Washington was living with Diabetes is like. She's kind of a big deal.

Isa is a triplet, and loves spending time with her brother, Max, and her sister, Mia. She loves playing school even when she’s not in school. You can always find her reading or doing math workbooks. She’s also a brown belt (soon to be black) in Taekwondo!

She loves decorating her pods and showing off by wearing them on her arm and leg for everyone to see. Dad Greg says Isa is a shy kid and doesn’t like to be the center of attention. With a growing social media following, she is proud of herself when her mom and dad tell her that she inspired other people. Now that she’s starting to understand the whole social media thing, she’ll say things like, “Post that pic on Instagram!”

I asked Isa, if she could tell the whole world one thing about Diabetes, what would it be?  She says, “Diabetes can’t stop you from doing anything. You don’t have to stop doing what you like to do a lot.”   

 You can follow her on Instagram @inspiredbyisabella or on their Facbook page, Inspired by Isabella.


Addison

 



7 year old Addison has been at this for a while; she was 2 and a half when she was diagnosed on February 28th, 2013. They were visiting their family out of town at the time, and they called their pediatrician from their hometown, because they starting suspecting diabetes. They were told the signs to watch out for, and the next week they called him back because all of the symptoms were happening. Mom decided to bring her in for them to test her blood sugar. Well, mom knows best, and she was diagnosed that day.

In the past 4 and a half years, Addison and her family have raised over $25,000 for diabetes! Dad Ryan participated in 2 Tour de Cure rides, and they’ve participated in 5 JDRF walks. She’s been attending the Friends for Life CWD conference for 3 years and they plan to attend as long as they can!

Addison loves Pom Poms, swimming, and is a pretty great little gymnast. When she’s not doing sports, she loves playing outside with her friends and building forts with her little brother. When it’s time for a low/no-carb snack, she likes sausage and cheese.

She gets super proud of herself when her blood sugar shows 100 mg/dL/5.5mmol/L on her PDM. She loves school, so she loves seeing smiley faces and stickers on her homework. One of the things she’s most proud of and loves to show off are her pods, because she paints them all herself. Last year her Kindergarten class all painted a pod and gave them to her on her diaversary! I think that's amazing. She gets really excited when her friends wear her pods and show them off to the rest of their friends. 

I asked Addison, if she could tell the whole world one thing about Diabetes, what would it be?  She says, “Diabetes is not easy but it can be fun sometimes. I don’t like having diabetes because sometimes I have to eat when I am not hungry but sometimes I need to eat and I like getting candy sometimes when I have a low blood sugar.”   

You can follow her on her Facebook page Addison's Angels.

10 wasn't enough, so surprise, we have one more!


Maeve

7 year old brave Maeve is also a pro at this, being diagnosed at 18 months old on May 20th, 2012. She was diagnosed in a complete crisis! One Sunday morning she didn’t wake up from her crib. She was in DKA, after 7 visits to the paediatrician and urgent care who kept misdiagnosing her with things like the flu, step throat, etc.

Her family does the JDRF Walk, and also attend the CWD Friends for Life conference every summer for the last 5 years. The family together holds multiple of their own fundraisers for JDRF, the Diabetes Research Institute, and Children with Diabetes.

To treat her lows, she usually used glucose tabs, or ‘glue-keys’, as she calls them. She loves drawing, reading, jumping on the trampoline, and playing flag football. She’s one of the only 2 girls on the team! What makes her proud is doing well in school.



I asked Maeve, if she could tell the whole world one thing about Diabetes, what would it be?  She says, “Don't worry, I am ok. I'm not low all the time!”

 You can follow her on her Facebook Page Brave Maeve.

 ~
These kiddos are my heroes.  

Valued Voices Series #2 - Kerri Sparling

 

This past week I had the privilege of interviewing one of my idols. Kerri Sparling is a well-known and impactful blogger in the diabetes community, and I was lucky enough to get to see her speak on multiple panels at the Friends for Life conference this past summer. I knew right then and there that I pretty much wanted to be her when I grow up.

Michelle: Hi Kerri! Thanks for taking the time to chat with me! So first I’ll let you introduce yourself.

Kerri: So my name is Kerri Sparling and I’m talking from my home office with my 7-week old son on a little bouncy chair on the floor and my 6-year-old off at school, so my life is very centered around my children, but I think you and I have connected more because you know me through the Diabetes stuff. So I’ve had Type 1 Diabetes since I was 7. I have marked 30 years with Type 1 this past September, which feels like a huge fat milestone.

Michelle: That’s a huge milestone.

Her son coos in the background.

Kerri: I know, my son was like, “wow!” I’ve been writing a diabetes blog, www.sixuntilme.com, since 2005, so I got in on the whole blogging thing before people even knew what a blog was. I didn’t even know what a blog was, it sounded like a weird word.

Michelle: What made you start blogging about Type 1 in the first place?

Kerri: I had no friends who didn’t make insulin! I thought that was so sad! It was the saddest thing ever!

Michelle: That is pretty sad.

Kerri: It bummed me out because I live in Rhode Island and it’s a real state, but it’s not the biggest state, and we don’t have a huge network of advocacy organizations, so I wanted to find people who were living with diabetes, and not just having it like everyone’s old aunt or their dead grandmother. I wanted to find people who were, you know, in my age range and doing the stuff that I was doing, and living with it, not dying from it. And so that’s what spurred me to start the website, I wanted to find my kindred spirits.

Michelle: Did you ever imagine that your blog would become so successful?

Kerri: No! I think it’s weird!

Laughter ensues.

Kerri: Cause I’m not saying anything that other people aren’t already thinking or experiencing. I think it’s that storytelling sort of thing, I know I was one of the first bloggers but it’s been really cool to see other people go, “Yeah I want to share my story.”, and then when they share theirs and I get to connect with them with mine, the network of people that I now know that don’t make insulin grows and grows and it feels, I don’t know, like there’s a community that I can base my hopes on instead of all these Google search returns where I feel like I’m basing a bunch of fears on.

Michelle: Okay, I have a good one for you. If you could only have one thing to treat low blood sugars for the rest of your life, what would you pick?

Kerri: Oh my god, candy corn. People think they’re disgusting but I would live and die by those things. They’re so nasty and so little and you eat about 600 of them in about a 5 second span. So as far as structured glucose tabs, a friend of mine makes the GlucoLift glucose tabs and I

think they’re the best structured treatment on the market. They taste good enough that you eat them but not so awesome that you eat 10,000 of them.

Michelle: If you had to have a day with multiple high blood sugars, or multiple low blood sugars, which would you pick?

Kerri: It kind of depends. Right now after discussing candy corn, the idea of a day of a bunch of lows kind of sounds appealing, because I have a whole unopened bag of candy corn in my kitchen, so that sounds kind of awesome. But I guess because I’m the parent of two small children and I work from my house and I have lot going on during the course of the day, I feel like highs are easier for me to fake it through, versus lows, they really pull me out of the game and can set me back for several hours. So, for productivity, I would probably pick highs.

Michelle: What’s your go-to motto or quote when things get hard?

Kerri: I kind of stick by the whole “Diabetes doesn’t define me, but it helps explain me.”, not because it’s the trademark tagline on my blog, but because it applies. Like when things get crappy whether it’s diabetes related or not, it’s nice to think that this thing that weighs on me so heavily disease-wise, and I mean you do it too, all the stuff that we do day in and day out, it’s not the core of who I am. And reminding myself of that makes the daily tasks a little less arduous and irritating and more “I'm A-okay, this is just what I have to do.”

Michelle: What is the most exciting thing for Type 1 advocacy that you’ve gotten the chance to do?

Kerri: Well there’s two things. The first is for the short game and the second is for the long game. So for the short game I’ve been really excited to be on the front lines of hearing about Ed Damiano’s bionic pancreas, the iLet mechanism, where he’s working towards the dual hormone system and I’ve met his team and I’ve seen his prototypes, and he and I have talked quite a bit, and it’s really exciting to see someone actually putting their money where their mouth is. They say that they want to get good blood sugars all the time and he’s actually creating something that produces that for his kid, and for us. And I just think that’s incredible that that could actually happen before I’m too old to enjoy it. So that’s the short game. And I think the long game thing that I’m the most interested in, and the most proud of, is being part of the community. So years ago, when you put ‘diabetes’ online, you got all those bad search returns, all those nasty things, and I feel like through the stuff that I’ve done and the stuff that a lot of my peers have done, that we’ve helped move forward the conversation. No, it’s not just blood sugars, it’s not just A1Cs... It’s about a mental health component, it’s about co-morbidities, it’s about other chronic illnesses that you may be living with, it’s not just existing in a vacuum, it exists in the context of someone’s real life. And I feel like all of us who are sharing our stories help kind of flush that out for people for ourselves and for people who don’t really have a strong understanding of diabetes. We’re helping paint a better picture of what our disease is like for these people who assume it’s because we eat too many cupcakes, and that’s kind of badass.

Michelle: If you could tell the world one thing about Type 1, or about life with Type 1, what would it be?

Kerri: We make it look so easy! And it’s not easy! People have a perception that we just take a shot or take a pill or avoid sugar or whatever it is that they think is the one thing that we do, and they don’t see all the minutiae of management. So we make this look way too good. 

Michelle: Do you ever get tired of talking about diabetes?

Kerri: Yeah! Of course! It’s boring sometimes. And then sometimes when it’s the least boring you don’t really want to talk about that either. I don’t like that it’s such a pervasive thing, but there is a lot of therapy to talking about it. So not keeping all my thoughts about it or my anxieties, or my successes with it bottled up, just to help me manage the mental health aspect of things. 

Michelle: What would your advice be to someone who was recently diagnosed?

Kerri: There is life after diagnosis. Cause I feel like when you get diagnosed you get that whole list of crap you can’t do anymore, and they never hand out a list of all the things you still can do. So I would want people to understand, whether it’s their kid or themselves, that there’s a whole lot more to life than just the diabetes and you will still be alright. Because it never seems like it in those first few months or years I’m sure.