Diabetes Solutions of Oklahoma
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.
Helping students with diabetes
By Elizabeth Boaz-Montzka
Hello! My name is Elizabeth Boaz-Montzka and I’ve had type 1 diabetes for 46 years; I’m now 54 years old.
I live in the western suburbs of Chicago, Illinois with my husband and nine-year-old son. We’ve lived here for about three years. I also happen to be Kim Boaz-Wilson’s sister!
My diabetes journey has been an interesting adventure. For many years, I didn’t have medical insurance. I paid for all of my supplies with cash, out of pocket. I lived in the city of Chicago at the time, working as a waitress at a jazz club and studying music and singing.
Because of my crazy life, I checked my blood sugar about 10 times a day. I spent a lot of money on test strips and everything else over the years, but that’s what I had to do. I simply had no other choice if I wanted to live a full life with type 1 diabetes. Fortunately, I was able to find a doctor who gave me bottles of insulin from time to time, and discounts on doctor’s appointments.
In 2005 (when I was 42) I finished my bachelor’s degree in music education and got my first job with medical insurance, as a teacher. Shortly after that, I used my insurance to get my first insulin pump! My A1C dropped significantly!
I’m still a teacher but have switched from music to special education. I finished my special education endorsement last August and am working as a substitute teacher in my local school districts. I have even subbed in my son’s classroom! He’s in the 4th grade and liked that I was there. I figure that will last for about another year…
One day, not long ago, I was a substitute in a kindergarten class at my son’s school. I went in and read the lesson plans and found that a boy in the class had type 1 diabetes and that I should talk to the school nurse about him. The teacher’s notes went on to say that if I was comfortable, I could monitor his blood sugar level with his phone, and that he was very nervous about having a substitute teacher.
I went to the school nurse and said I was comfortable monitoring this child’s blood sugar level on his phone because I have an insulin pump also!
I called attendance when the class arrived that morning, and when I figured out who the student with diabetes was, I asked him to come to my desk because I had a secret to tell him. I pulled my insulin pump out of my pocket and his eyes lit up! We had a good day and he was calm and participated fully in all of the lessons.
As a teacher, I’ve also had the opportunity to meet with other students with diabetes. In the state of Illinois, a student with diabetes can obtain a 504 plan. This allows the student to take breaks if needed during important tests (such as the ACT, SAT, and finals) to do all of those things that those of us with diabetes need to do. I have been a proctor for some of those tests.
From what I’ve observed, the other students are very accepting about these breaks and other parts of diabetes maintenance. I’ve heard comments like, “Oh, he has to do that. He has diabetes.” I’ve had students of all ages discover me checking my blood sugar behind the desk. I simply say, “I have type 1 diabetes. I’m just checking my blood sugar.” Many times the response I get is, “Oh, my grandma/pa/mom/sibling has that.” Then we just go about our day.
Having type 1 diabetes is tricky, but with care and attention a person can live a full and happy life. I try to follow a healthy lifestyle. I get exercise, not by going to the gym, but by walking my dog, and walking up and down the stairs in our 3-story townhouse. I like to walk, and I also walk frequently at my job.
I try to eat a healthy diet. For many years now I have eaten a diet full of lots of organic vegetables, brown rice, and organic chicken. We also eat fish and occasionally steak or pork. I like olives, olive oil and avocado—foods full of healthy oils. I drink a lot of water. I don’t drink any soda. I do drink one or two cups of coffee every morning, with stevia as sweetener. I also drink one or two glasses of wine, made from organic grapes, every evening.
Sometimes we get in a hurry and order out for dinner, but we get it from our local pizza restaurant or Asian restaurant, and that seems to be a little healthier for me than the traditional American fast food. My A1C’s for the last year have continually been between 6.2 and 6.3 (and since we got the townhouse and the dog, I’ve been getting more exercise).
There are always ups and downs living with diabetes. But it can be done. And it can be done well. Eat healthy, get exercise, check your blood sugar, take insulin when you need to, and live a fun, full life!
P.S. Don’t forget to eat your favorite treats every now and then, too. I do, and so does my sister!
Connecting through diabetes
By Lincoln Keck
Twenty years ago this summer I lost my best friend, Nathan, and made a new one, Ryan. My time that summer at camp, and every year since, has made all the difference in the world to me.
It was only a couple months before I first went to diabetes camp that I had been diagnosed with type 1 diabetes, missing the last few days of my seventh grade year because I was in the hospital. Medically speaking, everything about that experience was textbook and could be a case study in a journal, but what wasn’t typical is that for the past year I had watched my friend Nathan courageously battle Ewing’s Sarcoma.
Somehow in those moments when I was in the hospital and learning to give insulin to an orange or test my blood sugar, I realized that my treatment would help me be well, feel well, and live well, should I choose to accept it. My friend’s journey was different, but he was able to teach me lessons about myself through it.
Accepting diabetes was relatively easy for me, and surely something I was able to do because of how Nathan chose to live despite the challenges he faced. A blend of both of our journeys that we faced at a young age has shaped my life for two decades now, and I’m better because of it.
Cancer unfortunately took my friend, but diabetes has not taken me. Rather, it has connected me to the world in ways I never would have thought possible.
One of the big events that I still remember vividly is returning to camp one afternoon following the funeral. Interestingly enough I met my cabin mate Ryan down at the lake for some fishing, but it was more than that, it was healing. I don’t remember much specifically from camp that first year, but I remember how peaceful and calm that time on the water was, and how it sowed seeds for a new brotherhood.
During that first week of camp, Ryan and I became fast friends. It was a natural fit, because we each had our fishing poles and tackle ready to catch the big ones, and despite all the ‘locals’ (full-time camp staff and counselors) telling us the best bait was corn or leftover dinner rolls, we were both tying on and throwing topwater plugs and ten inch worms.
We caught fish after fish, big ones and small ones, in peace and quiet as well as in conversation, and we understood each other perhaps like no one else ever had. Of course we had similar interests and enjoyed similar things, but we also knew how each other felt and what the other was going through. There wasn’t a need to try and empathize and understand what the other was feeling or going through, we both knew exactly what that was. In a different sense, we both knew that about every other kid at camp, and that understanding continues to this day.
It’s been twenty years now since I said goodbye to the friend who helped me understand so much about life and happiness, and two decades since I welcomed another friend who has done the same thing in a different way.
Ryan and I haven’t missed a summer at camp together during this time, and we still seek ways to make that next return work out. We have both made it through college and graduate school, have been blessed with beautiful and loving wives, and have several little ones each running around to teach us new lessons about life.
Having diabetes hasn’t been easy, but it has made life good in ways that we may have never known otherwise; and it all started at camp!
I owe a special thanks to all the others who have played their important part in this life as well, and I hope you know how thankful I am for each of you.
One mom’s quest for Sugar Surfing Success!
By Megan Rose, mom of a child with T
1D
Dr. Stephen Ponder is a pediatric endocrinologist who has lived with Type 1 Diabetes for around 50 years. I learned that Diabetes Solutions of Oklahoma was bringing him to Oklahoma City just days before my son and I were planning to drive to see him speak in Wichita.
I was so excited to find out he was coming here, because I have learned so much from his book, Sugar Surfing.
Our son Tate was diagnosed with type 1 diabetes at eight years old in December of 2015. I think everyone can remember their first few days and weeks of their new life with type 1 diabetes. There is so much to learn, and so many mistakes to be made, all while trying to stay as close as possible to that magical number without going too high or too low.
Not long after diagnosis, we started experimenting (and found a lot of success) with pre-bolusing. One night I was googling how to pre-bolus for sushi and I read about someone’s successful experience with pre-bolusing and Sugar Surfing for sushi. I was instantly intrigued when I read about their experience.
Early on, we found that the basic rule of fifteen carbs to correct a low would over-correct Tate, so we treated lows with four to six carbs instead of fifteen to avoid the rebound high. I felt like we had pretty good control over not going too low, but I was always discouraged when the CGM graph climbed higher and higher. One reason that happened was because we had Tate’s high alert set at 240. If we weren’t watching the graph, by the time we realized he was climbing, we were fighting the high plus the insulin resistance that comes along with that.
One of the first and easiest things we learned from Sugar Surfing was to look at the CGM often (several times per hour), and to lower the high alert so that we would be notified before he reached the 200’s. Once we lowered Tate’s high alert, we could see trends and if we found that he was trending up, we could use small doses of insulin to try to nudge the CGM line and get it headed back down.
Sugar Surfing forces us to be very proactive with Tate’s doses and corrections, but the results we have seen so far have been encouraging. Sometimes we have great days, and sometimes we feel like we fail greatly. That is why I’m excited to hear Dr. Ponder speak and learn more about how to continue to use these “micro adjustments” to see more of the steady blood sugar levels that Dr. Ponder himself experiences using this method.
I hope our community will welcome him with excitement! Thank you, Kim and DSOK, for bringing him to Oklahoma to speak and teach us how to take better control of T1D!
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 Clour
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.
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 1
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
By 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 Carter
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 Mom
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.
“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.
