DSOK Spotlight

Diabetes Spotlight: Amy Lasater

My name is Amy Lasater, and my story began 32 years ago at the age of 3 when I was diagnosed with type 1 diabetes. I grew up in a home where my parents taught me that I am more than just a person with diabetes. They taught me to strive and to be whatever I want to be.

I remember at the age of 3 being sick and in the hospital. I remember my dad giving me my first shot. I remember my mom always having a snack for me or making sure I was on a schedule. I remember starting kindergarten and having to wear a sticker to class to let my teacher know how my blood sugar was that day. I remember growing up in a small town in Oklahoma and both being and feeling like the only one with diabetes.

When I turned 9 years old, my life was changed forever! My parents allowed me to go to diabetes camp. That is when I realized I am not the only one with this disease. There were children there of all different ages that understood what I go through on a daily basis.

I met lifelong friends there whom I still keep in touch with today. One of the biggest things that happened to me at camp is that I learned how to draw up my own insulin in my syringe! (This was HUGE!!!) I now had the freedom to go spend the night with my friends because I could give my own shots. Most parents were scared to let me spend the night because they did not know what to do.

During my teenage years, life did not slow down. I was playing sports, trying to juggle my blood sugars, trying to act like I didn’t have diabetes, and keeping up with school work.

When I was 17, Humalog came out. It was a game changer. Then we learned that a carb is a carb. That year is when I had my first brownie. I remember this very vividly because I took them to a party with my friends from diabetes camp, and my mother cut them all up into the size of a dime. Of course, I was the joke of the party.

Later, growing up like all little girls do, I couldn’t wait to get married and have children. I ended up marrying my best friend, and we were blessed to have three beautiful girls. Abbie is 12, Chloe 8, and Hunter 7. My first pregnancy was a surprise! I was very excited but scared also.

At my first OBGYN appointment, she informed me that I was considered high risk, and she would not and could not deliver my baby. She informed me since I was high risk that I would have to go to a specialist. Not something to say to a first-time pregnant woman. I finally got into the specialist and my long journey began.

Having diabetes at that time for 20 years, I thought my blood sugars were under control. My A1C was in the low sevens and sixes. Well, not good enough! What I learned is that women with diabetes can have big babies. I had to see my specialist often to monitor the growth, make sure my blood pressure was good, and to make sure there were no complications. I was seeing my endocrinologist every other month to make sure my blood sugars were as normal as possible. This was very hard because my hormones were crazy. As you well know, anything—I mean anything—can fluctuate your blood sugars.

Six weeks before Abbie was due, and I was going to my specialist every other week. I was there for a normal stress test, which I failed. I ended up getting preeclampsia. They wheeled me immediately to the hospital. All I could remember is that I was not ready!

My husband was at work, my specialist was on vacation, and my mom and I were going shopping! The Lord had other plans. At eight the next morning, Abbie was born. I ended up having to have an emergency c-section. She was eight pounds and 21 inches long. She was the biggest baby in the NICU.

Chloe was a totally different experience. My husband and I started praying and planning to have another baby. From having Abbie, I knew what was ahead of me. I started buckling down on my blood sugars and watching everything I ate. A few months later I found out that I was pregnant. I immediately called the specialist and my endocrinologist.

I went through the same steps going to the doctors (which seemed like a billion times) to make sure that she and I were both healthy. I made the 34-week mark, and I was so excited. All was good. I felt great. I thought, “I got this!” The next week on June 6, I ran errands with my husband and went shopping with my best friend. Then the contractions started that evening. Chloe was born that night at nine pounds ten ounces. She was huge!

Hunter is my miracle baby. By far, she was my toughest pregnancy. Hunter was born at 27 weeks. She weighed three pounds and fit in the palm of my hands. I had some complications with her and was in the hospital on bed rest for 40 days. Believe it or not, but it had nothing to do with my diabetes.

Once my miracle was born, she was in the NICU for 56 days. It was so hard to leave her there at the hospital. My faith, family, and friends were my biggest support. My blood sugars were on a crazy roller coaster with all the emotions I was going through. Trying to balance being a mom to a 4-year-old, 13-month-old, and new baby was very hard. I had to remember to take care of myself or I would not be there for them.

Now my girls are healthy and thriving. They are aware of diabetes and how it affects me. I am a school teacher who also informs my students of diabetes. I strive to be a role model for all my students, especially those with health issues. I am a Christian, wife, mother, daughter, sister, friend, teacher, coworker. I am Amy Lasater, and I am a person with type 1 diabetes!

Diabetes Spotlight: Tiffany Cooper

My name is Tiffany Cooper, and I am 17 years old. In September of 2006, I was diagnosed with type 1 diabetes. Since then, life has been pretty sweet, if ya know what I mean.

As a six-year-old, finding out I had a disease was pretty weird for me. I mean c’mon… it is called DIE-abetes, isn’t it? Terrifying!

Looking back now, a little over 11 years later, I wish I could warn myself that I wasn’t dying, just going through some changes. Back then I had no idea I would eventually meet some of my best friends EVER through this disease.

Today, I can say I am thankful for being a person with diabetes and that frankly, it makes me pretty darn cool. I started going to diabetes camp at Camp Endres in 2010, I think. My mom was scared of letting me go. I was almost 10 years old and had no spent a night away from my mom since I got diagnosed.

A whole week without mom was a scary thought, but I packed my bags, and she dropped me off in Davis, Oklahoma, for a week. From there on out, my life was changed forever. At camp, I made lifelong friendships with people just like me. I had never met another person with diabetes before, so this was just beyond cool for me.

Sometimes I wake up and wonder, “Why me? What did I do to deserve diabetes?” Then I remember that I CAN do this and that I really don’t have another choice besides to be tough and keep fighting. My friends with diabetes have these same feelings so when I have a hard day, I know I can call them up, and they’ll be there to tell me that we are in this together.

For me, the biggest struggle is dealing with people who confuse type 2 diabetes for type 1. To someone without diabetes, this probably sounds silly. But to me, and others with my disease, it can be so infuriating.

For the past 11 years, I have heard a lot of:

“Can you eat that?”

“But you could just try diet and exercise!”

“You don’t look like you have diabetes.”

“Oh yeah, I know all about that. My grandma’s cousin’s aunt’s uncle’s cat had diabetes!!”

Today, I am involved in all kinds of things that I never thought I could do when I found out I have diabetes. I am the current president of the Youth Activation Committee for Special Olympics Oklahoma. I compete in Special Olympics events with my friends with intellectual disabilities. I am involved in student council and leadership activities at my high school. I work part time at a local restaurant. I played softball and soccer for years. All of this while managing my diabetes.

I am much more than diabetes. I am a student, waitress, athlete, volunteer, leader, friend, and I am a person with diabetes (PWD).

So, here’s to proving the stigma surrounding diabetes wrong. Diabetes may make me need to take a juice break on occasion, but it will never hold me back from being awesome!

My Summer Project: Building an Artificial Pancreas

By Katie Aldridge

My name is Katie. I have type 1 diabetes. I’ve always worked hard at managing it, but after 23 years, a person gets weary. It requires constant attention to really control it well. Insulin can be quite volatile, and it’s usually not possible to do just the perfect amount every time.

Instead, I make lots of tiny corrections. Too much insulin = eat more. Too much food = more insulin. It sounds simple, but it requires decisions and calculations all day, every day. And all manner of things can interfere, like stress, hormones, lack of sleep, exercise, being sick, etc.
Hello parenthood!!!

Using a Continuous Glucose Monitor (CGM) and an insulin pump help me make these corrections with more precision. My control is good, but I tend to have too many lows. Low blood sugar can range from annoying to dangerous, so my goal is to have as few lows as possible while keeping my A1C under 6. It takes a lot of work. 

At the beginning of 2017, I started seeing unbelievably flat CGM graphs on Facebook with claims along the lines of “Just ate pizza. Look at my perfect blood sugar. This is so easy.” Umm, what??

This was a siren song I couldn’t resist. I started lurking on a FB group called Looped and began reading the online documentation for something called OpenAPS. It turns out there are people designing, using, and sharing open source Artificial Pancreas Systems, which help with things like keeping your blood sugar more level after eating pizza.

An APS is essentially a computer that does all those micro corrections for you. It bridges the gap between CGM and insulin pump. It uses the data from both devices to assess trends, make predictions, and give more or less insulin depending on whatever you need…. EVERY 5 MINUTES.

After reading for months and gathering all the stuff, I finally jumped in and built a DIY OpenAPS. It consists of an Intel Edison (tiny computer), an explorer board (connects wirelessly using wifi, Bluetooth, or radio), and a lipo battery. Throw in a small 3D printed case, and you’ve spent $180. Cheapest medical device I’ve ever owned!

It took me two weeks to set it up and install the software. My kids would be in bed by 8:00, I’d be done with household chores at 9:00, and then I’d work on this OpenAPS project until midnight. I could work like that for a few nights in a row before I’d be too exhausted to keep going the next day. So I’d take a few days off, then try again. This project had a steep learning curve, and it took more time than I’d expected.

I think I encountered or caused more problems than most people do. I knew NOTHING about Linux or a command line, and my particular setup had some uncommon issues. Fortunately, wonderful people from the OpenAPS community helped me on Facebook or the chat room on Gitter.

But getting help takes patience and humility. In the minutes/hours/days between getting an error and getting help to fix it, there were definitely tears and frustration. Then when things went well, I was dancing around the living room in victory. So many emotions! I was surprised at how emotional this entire project was for me.

I think it comes from this HOPE I allowed myself to have. Believing that something like this exists, that it could lighten the burden of type 1 diabetes, and believing that I could build it… all of that made me vulnerable and emotional. My husband helped keep me steady. When things were going badly he’d say, “It’s ok. Of course you’ll make mistakes. You’re learning something new.” He’s awesome.

I “closed the loop” full time at the end of June, but the workload didn’t really lessen until the end of July. That whole month I spent adjusting my pump settings, debugging a big problem I had, and learning how to monitor and maintain the system.

In the midst of all this adjusting, I began having some success. One night I slept through a pretty serious low blood sugar (despite alarms going off). OpenAPS brought me safely back into my target range while I slept. While I taught my music class, I completely ignored my blood sugar, and after class I was a little higher than my target but not much. The (good) stress and activity of teaching usually causes me highs or lows.

Now OpenAPS has my back. Amazing! To have a little computer buddy covering for me is like… grace. Did I correct a low with too many carbs? OpenAPS can fix it. Did I count that meal incorrectly? OpenAPS can help.

After six weeks of “looping,” I ran some reports. The results: an A1C under 6 with HALF as much time spent in the low blood sugar range. I definitely don’t have a flat CGM line, and I haven’t tried pizza yet. But these results have convinced me that this crazy thing I’ve done is actually working. I’m hoping for even more progress in the months to come.

Artificial pancreas is really a misnomer, because a natural, fully functional pancreas does so much more than this. APS technology is not a cure. It’s not something you can set and forget, at least not yet. It has required a huge time investment, so it’s not for everyone.

Even so, OpenAPS is something I’m so excited about, and it’s already improved my quality of life. I am amazed by the incredible minds behind these DIY diabetes technologies. The amount of work put into the Nightscout community is staggering to me. This is a community of people motivated by need, by love, and by a desire to make the world better. May God bless their efforts! And may the diabetes industry follow their lead.

Thank you for reading about my journey. If you want to learn more here are some links:

Connecting with other local T1D families

By Kelly Caven

Shortly after our son, Liam, now four years old, was diagnosed with Type 1 diabetes, we attended a support group organized by the Department of Psychology at Children’s Hospital in Oklahoma City.

Parents chatted about different topics, listened to occasional speakers, and the kids played across the hall, supervised by some of the department’s students and medical students.

Our son was only seventeen months old in July 2014 when he was diagnosed. We were devastated by the shock of it. And having had nearly lost him to severe episodes of DKA after multiple misdiagnoses, we were terrified about the daunting challenges we faced in learning how to care for our young son, and accepting our new normal. While we grieved, we knew we needed to learn as much as possible, and quickly.

The emotions and stress we experienced during this sharp learning curve were, at times, overwhelming. We felt as if we were on a small island in the middle of a vast ocean. Finding a group of people who understood and dealt with the 24/7 care of a young child with T1D reassured us that we were, in fact, not alone, and that things would get easier. While we still have days or nights that can be rough in regards to blood sugar management, they are much fewer and farther between because of what we’ve learned.

This group helped us tremendously. We asked questions and heard stories of others who were going through the same things we were. While the benefits of the Diabetes Online Community (DOC) are invaluable and endless, nothing replaces connecting with real people on a regular basis.

About a year ago, the formal group ended as the department could no longer run it, so a few families started their own group, called the OKC T1D Group. We share ideas, frustrations, and words of encouragement to help parents and individuals with T1D.  One of the biggest advantages of this group is that the kids get to play and interact with others who also have Type 1 diabetes.

Childcare is available not only for children with T1D, but also for siblings. Pizza and snacks are provided. Meeting times are the second Monday of every month at Harold Hamm Diabetes Center, 1000 N. Lincoln Blvd, room 3300, Oklahoma City, OK 73103. Join the Facebook group “OKC T1D Families + Playgroup” for the most updated information or email okct1d@gmail.com.

Shared diabetes journeys

By Rayna Zimmerman

My sister was diagnosed with type 1 diabetes at the age of six; I was sixteen then. My daughter was diagnosed at the ripe age of four; that time, I was 27.

To say diabetes plays a big role in my life is an understatement. You see, my mom was a single mom who worked nearly an hour away from home, which meant a lot of the responsibility for taking care of my sister fell on me as the oldest sister. I spent a lot of time treating, correcting, and checking blood glucose levels.

Fast forward ten years and people start joking that my daughter acts just like her Auntie Micah at that age. That was their polite way of saying that Hayden was typically mean, as Micah was prior to diagnosis. I played it off, thinking she was a spoiled only child, and I needed to up my parenting game. Soon the dark circles under her eyes began to take shape, and the lethargy started to set in. And while a million illnesses crossed my mind, diabetes didn’t because diabetes wouldn’t happen to my child—or so I thought.

One night she started vomiting, and the contents looked so strange that I took her to the hospital, as I was certain she had a blockage. They released us rather quickly and assured me it was just a virus. And I listened. If you’re reading this, you probably know how dangerous that could have been. We were lucky that it wasn’t. Three weeks later she started having accidents, so off to the doctor we went. We needed antibiotics for the urinary tract infection she obviously had. We left with a prescription, but it wasn’t long before I got the call to come back because they found sugar in her urine.

I was certain the sample was just contaminated (remember, we were just dealing with a mean four-year-old), but I assured the doctor I would check her blood sugar when we arrived at home. I ran to my mom’s house, conveniently two houses down from mine, and grabbed a meter. I had Auntie Micah check her sugar first so that Hayden knew what was coming, and then I pricked Hayden. The meter read 455. Oops! I forgot to wash her hands! Rookie mistake. We washed and tested again—479. And it hit me.

My child, my just-turned-four-year-old baby, had diabetes.

But, while diabetes plays a huge role in my life, this isn’t about me. It’s about Micah and Hayden.

So, fast forward with me again a couple of weeks. My daughter, who is now on insulin, is still mean and cranky. I’m so confused as to why. Luckily, our Dexcom (which we ordered the day of diagnosis and wasn’t readily available when Auntie was little) arrived! And then I finally understood.

Hayden’s blood sugar was spiking to 300 and over multiple times a day. I would probably be irritated at life, too! Thus, the research began. I’ve spent hours upon hours researching, asking questions, and trying (and sometimes failing at) new techniques.

Unfortunately for Micah, we didn’t know that there was more at play than the number of carbs consumed. We didn’t know that the fat in a meal can encapsulate the carbs and cause a high later, and we definitely didn’t know how to counter that or use it to our advantage. We didn’t know that less insulin over an extended period of time could work better than a large bolus, nor that pre-bolusing would help to prevent a spike.

Now that we know all of these things, both girls feel better, and my daughter has her happy demeanor back. I use Dexcom to monitor trends and make adjustments as necessary. For example, pizza not only has a lot of carbs, but also a lot of fat. This causes a low shortly after consumption (if the full amount of insulin is given at meal time) and a high later when the fat has burned off, and the carbs kick in again.

Monitoring the trend has taught me that I can do an extended bolus on her pump to give her 30% of the bolus immediately and extend the remaining 70% over the next four hours. This means that for four hours, the pump is slowly giving her insulin to counter the pizza she consumed several hours earlier.

Speaking of fat, because I have the ability to monitor trends on Dexcom, I’ve learned to use the fat component to my advantage. Fruit, especially melon, spikes Hayden almost immediately regardless of a pre-bolus unless I pair it with something high in fat, like an avocado. This allows her levels to remain steady and within normal range while the extended bolus is at work. Having a CGM has also allowed me to determine how early I need to pre-bolus for certain foods.

For example, in the morning if she is having her normal toast, eggs, avocado, and fruit, I bolus her right before she starts eating. If not, she drops too low before the carbs kick in. If she is eating something high in sugar, like waffles, I know I need to pre-bolus about 45 minutes early, as the amount of sugar causes an immediate spike. I need the insulin to take effect prior to her eating.

Monitoring the Dexcom trends and making adjustments based on those trends has allowed us to stay within range the majority of the time, which for us is between 70 and 140. Of course, diabetes doesn’t always play fair, and sometimes insulin works like water. Or there isn’t time for a 45-minute pre-bolus because a mom in her Pre-K class brought impromptu snacks. However, for the most part, a CGM like Dexcom allows us to live our lives as happy as we ever were.

Diabetes Daily Grind

By Amber Clourjdrf-walk

Now that National Diabetes Awareness Month has wrapped up, what better topic to write about than the impact the diabetes online community (#DOC) has had on my life. It has been clear time and time again how I did not fully appreciate the value of this random group of souls until I tapped in.

The past four years have led me to this life-changing realization. Just before my 30th Diaversary, I met Ryan Fightmaster, a fellow T1D. It was the first time I felt comfortable sharing what life was like with diabetes. He got it, and every time we got together, it was a therapy session of sorts. We knew there was more to this disease than what we were getting from our endocrinologist’s office. No one was talking about going to prom, running a marathon, dating, and all of the other normal things folks do.

With this newfound T1D friendship, it was time to take action. So I created a blog, DiabetesDailyGrind.com, to share the real life, which has since grown to include guest writers from across the globe. After a year or so, we thought some of our adventures might be better told in person, so we rallied up the courage and launched a podcast. The Real Life Diabetes Podcast is inspiring fulfilled diabetes lives through honest support and practical tips. We saw an opportunity to share our humorous stories, transform lessons learned into how-to guides, and produce a type 1 and type 2 diabetes podcast to inspire folks with the disease to get the most out of life. By getting at the heart of what matters, we hope to offer a message that fills a much-needed void.

We’re not experts, just people doing our best and starting conversations.

ddg-crew

We often share with newly diagnosed T1Ds or the parents of T1D kiddos the importance of knowing other people with diabetes (PWD). This might seem simple, but we’re often on a “diabetes island” and can’t grasp how alone we are until we find another kindred spirit with whom we can unleash our fears, anger, and deepest thoughts. Each PWD is different. Our ways of connecting, listening, and sharing our stories are unique, so finding the right DOC outlet is key, in my mind, to living the best life.

There are numerous sites you can tap into, but in case you don’t have time to search, I’ve listed a few that come to mind. For the record, I’m still exploring them myself…

Websites and blogs:

Beyond Type 1horizontal-tattoo
Bitter Sweet Diabetes
College Diabetes Network
Determined Daddies
DiabetesMine
Diabetes Daily
Diabetes Dominator
Diabetes Sisters
Living Vertical
Our Diabetic Life
Scott’s Diabetes
Tales From A Type 1
Texting My Pancreas
The Diabetic’s Corner Booth
The Wanderlust Days
TuDiabetes

Need help searching? Check out #dblog or #DOC on social media outlets.
If podcasts are more your thing, you can search #dpodcast on Twitter to score the mother lode.

Sam Steger’s Story

steger-familyBy Keely Steger and the rest of the Steger Family: Charles, Noah, Sam, Austen, and (new baby!) Harper

Just like every T1D family and individual, we have a date we will never forget. For us, diagnosis day came on December 8, 2012. Our son, Sam, was just a couple months shy of his 4th birthday.

Since that’s right in the middle of the busy holiday season, our life that week had been filled with parties and events, hot chocolate drinking, and cookie baking and eating.

My husband and I had been noticing some things about Sam’s behavior that were unusual (extreme moodiness when he was hungry, excessive thirst, and frequent urination with nightly bed-wetting) and while “diabetes” was in the back of both of our minds, neither of us wanted to vocalize our fears.

However, one night, before my husband and I were headed out to a Christmas play and grandparents were coming to watch the kids, my “mother’s intuition” wouldn’t stop nagging me. I called a friend whose son has T1D and she came over with a meter and test strips to check Sam’s blood sugar.

After a few agonizing tries (dead meter battery!!), our life changed forever. Sam’s blood sugar was 600. Our friend immediately called Dr. Domek, her son’s doctor and a friend of the family. It was a Saturday night in December, but he answered and gave us the help and support we needed to get through the weekend until we could get Sam into his office first thing Monday morning.

The first few days, weeks, and even months of life with diabetes was incredibly hard on all of us. Sam was just 3 years old, and he didn’t understand what was happening to him. He fought us at every single blood sugar check. He fought us at every single insulin injection. He fought us at every single meal, thinking he had figured out that if he didn’t eat, he didn’t have to have a shot.

He and his siblings passed around an awful stomach bug, as well as a cold and fever, that only made matters worse. Those were dark days, and I feared that they were a picture of what our new normal life would become.

Gratefully, Sam adapted, as did we all. We found better solutions for blood sugar testing. We used alternative sites for injections. We made the decision as a family to change some of our eating and snacking habits.

As a family, and a team, we continue to walk through this life with Sam. It’s not always easy, and it often feels unfair. Sam is now 7 years old, and he is wise and mature beyond his years. For the many times he has said, “It’s not fair that I’m the only one with diabetes,” there are just as many times he says, “God knows that for some reason, having diabetes is what’s best for me.”

In the past 4 years, Sam has been able to try out an insulin pump (though he ultimately prefers the injections), and most recently started wearing a CGM (continuous glucose monitor). These pieces of technology have been life-changing for Sam and for all of us who care about and for him. It’s not unusual to see his little sister pick up his receiver and announce, “Sam, you’re 137 with the arrow going up!” It’s a team effort! I’ve even had moms check in with me after their child came home from school announcing that Sam got a little low during class.

If we could, we would change Sam’s story and remove diabetes. As his parents, we want a “normal,” healthy life for Sam and all of our kids. But as Sam reminds me, there is a good reason that he has diabetes. We may not fully understand that reason, but we continue to see God use this tough reality to force us to rely on His strength, to pray, to hope, and to stick together as a family to love and support Sam. While we would change diabetes if we could, we wouldn’t change Sam and his loving, tender, compassionate heart for anything.

Finding support for T1D at camp

By Mark Cartermark-carter-and-family

Spring break during my freshman year in college was a time I will never forget. Unfortunately, the memories I have are not of a beach in Florida, but of a nurse telling me that my blood sugar was 750 and that I needed to be on insulin.

It was like a tornado ripped through my life and destroyed everything in its path. I was going to have to relearn everything. Type 1 diabetes began as curse. Luckily, that eventually changed over time.

There have been many days over the past 18 years that I struggled with loneliness and with people who just didn’t understand what I was dealing with. I didn’t want to talk about it or deal with the daily grind of managing my disease. My family members didn’t even know the difference between type 1 and type 2 diabetes.

I would come to see that living with type 1 diabetes was a gift, one that has allowed me to understand and empathize with many who know the pains of checking blood sugars, counting carbs and having many highs and lows. Diabetes wasn’t going to control my life and tell me how to live!

Changing my worldview meant changing my support group and adding people to my life that really wanted to live life with me. Recently, I was fortunate enough to attend an adult diabetes camp, the Camp Endres Getaway with Diabetes Solutions.

Camp was incredible! I can’t even describe how much I needed to be at this camp. It was the first time in my life that I had been around 30 people from the ages of 19 to 49 who lived with type 1 diabetes.

After the weekend I realized just how important it was for me to meet others that were struggling with the same things and were okay talking about real life issues. It was a safe place to ask questions, chat, eat, and laugh.

I walked away from camp refreshed and ready to conquer the type 1 diabetes world. I kept asking myself, “How many more people need to be at camp to talk about issues with diabetes? How many people are struggling and don’t have anybody to talk to?”

Our many talks over the weekend helped me refocus on being passionate and positive in helping others with diabetes. Camp reminded me that I have a huge responsibility to be an ambassador for those who don’t have a voice, and to pass on this knowledge to others.

Ryan Elizabeth explains T1D to her 4th grade class

By Susan Quintanilla, T1D Momryan-elizabeth

My daughter, Ryan Elizabeth, has had her insulin pump and CGM monitor for almost 7 months. Like many other kids with T1D, she goes to school sporting some pretty handy gear.

Ryan spent a lot of her first two weeks of 4th grade in the office trying to manage her high blood sugars, and her insulin pump alarm was regularly sounding off during the class day.

Ryan’s initial class includes 25 students and one teacher, but this teacher regularly joins forces with two other teachers who also have 20-25 students in their classes. That meant that about 75 students and three teachers were hearing her CGM alarms and seeing her leave the classroom and return, day after day.

With all this activity, Ryan was often asked questions like, “What’s that on your arm? What’s that sound? Where did you go?” She had to answer these questions several times each day.

Ryan doesn’t mind anyone knowing about her T1D. She isn’t shy about her diabetes, but she is human. It became very annoying for her to be asked questions throughout the day about her diabetes.

One afternoon, I came to pick Ryan up from school because her blood sugar was very high. She was feeling gross and very disgusted with diabetes in general. She was quiet on our drive home. But then she began to tell me about how everyone constantly asked about “this thing” on her arm. I could tell that she was really annoyed.

She said that she didn’t mind people knowing, but constantly having to answer questions from different people was frustrating. I suggested that we ask her teacher to tell the students about Ryan’s diabetes, but Ryan said that she’d like to do it.

Ryan wanted to explain her T1D to all three classes and teachers at once. She wanted to have everyone’s attention so she could explain her CGM and her insulin pump, and why it sometimes beeps. She wanted to give them time for questions at the end so everyone could hear the answers.

That night, I called her teacher and explained the situation. She was more than happy to give Ryan the time she needed to explain her T1D. When Ryan returned to school, her class gathered along with the other two teachers and their classes to listen to Ryan explain T1D.

ryan-class“Hi. For those that don’t know me, I’m Ryan and I have type 1 diabetes. This ‘thing’ on my arm is my CGM (continuous glucose monitor) and it reads my blood sugar. It tells me when my blood sugar goes high or when it goes low. It beeps from my insulin pump. When it beeps, I have to do something about it to keep me from feeling sick or passing out.”

Ryan took out her insulin pump to show the class. “This is my pump. It is attached to my body. I tell the pump to give me insulin whenever I eat food or when I get high. Does anyone have any questions?”

Some kids admitted they were wondering what those things were. Others asked about how the insulin tube attaches to her skin, and a teacher told them it was through a needle in her body. Some other students mentioned that their grandma or grandpa has diabetes, and Ryan told them that her diabetes was a different kind than theirs.

It went very well and the kids were all engaged in learning about what they had heard and seen in Ryan’s behavior. After her speech, kids have felt more comfortable approaching her on the playground, and they help her answer when other kids ask her about her equipment.

Ryan knows this won’t end all the questions; she understands that this is a life long-battle. But she also knows that most kids are just curious, and a bit of education can go a long way.

Campers form strong bonds of friendship

By Kim Boaz-Wilson, RN, BSN, CDE…Mother to one, mother of many

Camp EndrCampers group pices Senior, held in early July, welcomed 69 teens to a fun and impactful week. Many friends were reunited and new ones were made. For many of us, each summer camp is like going home to those we love and those who love us. It’s truly our second home… and I am often seen as campers’ second mom. A title I hold dearly.

Many young adults and healthcare professionals give their time and expertise to campers who attend Camp Endres. 

Melissa, Morgan and Natalie first began as young campers many years ago. At the time, they had no idea their friendship would grow to be so strong. Eventually, they all became camp counselors and together, have helped shape the lives of many. Here’s what Natalie has to say about it:

“I think it’s truly magical when you’ve met people that have seen you at your absolute worst and your absolute best and the love that they have for you never changes. I believe that this magical notion is such a rarity that once it is found, you have no choice but to believe in soul mates.

Camp counselorsI really really think this connection is something even deeper than a romantic love for someone. The type of soul mates I have met at this camp surpass any type of expectation or want I have ever had and because of this, it is the most important thing in my life.

When I was a camper I think I had an idea that these people would be in my life for a long time. What I didn’t know is that these people would be my lifeline, my best friends, the absolute loves and light of my life.

When I became a counselor, I had the same idea that these campers I had, would be just as important and I hoped I would make a difference in their lives. I had no idea that the friendships I had with my co-counselors that I made as a camper, would inspire my campers to form the same kind of bond with their friends.

Over the years Morgan, Melissa and I have had a lot of campers. Hopefully we’ve taught them a lot of things about their disease and most importantly, I hope we taught them something about friendship and how it trumps everything. Morgan, Melissa & I have been friends basically our entire lives. I can’t think of humans I love, trust, or care about more and it’s like I feel beyond blessed that I get to do life with them. I don’t love this disease but I love that it brought me to them.”

Thank you to all of our volunteers who make Camp Endres such a success! I love seeing the friendships formed at this camp.

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