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 T1D

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!

Camp Endres Junior: “The most super awesome experience”

Camp ENdres Junior 2016 group photoCamp Endres Junior 2016 provided “the most super awesome experience anyone with diabetes could ask for!” as told to me by a first-time camper. Who could ask for anything more?

This year, 56 campers and 43 staff (including both health care professionals and medical counselors who also have type 1 diabetes) enjoyed a week of coming together as one big family and had an opportunity to grow within themselves.

Campers overwhelmingly reported that what they love so much about Camp Endres is that when they come to camp, they “fit in” or they feel “normal.” At camp, everybody gets it. Everyone seems to understand the same struggles and frustrations of feeling alone and burned out by diabetes.

Camp Endres empowers campers and staff to feel like they truly matter and that having to stop to check blood glucose readings is no big deal. Everybody does it. At camp, we had several campers who put their insulin pump infusion set in all by themselves for the very first time. We welcomed campers who had never stayed away from home before because of their diabetes.

This summer completed my 23rd year of diabetes camp at the YMCA Camp Classen. And as much as fashion and food trends have changed over the years, kids with diabetes really haven’t. The struggles kids with diabetes face today are no different than they were 20 years ago, even though so much of how we manage diabetes has changed.

Kids with diabetes still feel isolated, fearful, and pressured to do better. Some feel shame. Some feel like they’re under a microscope and misunderstood—just to name a few of the emotions experienced by kids with diabetes.

It is such a wonderful feeling when kids come to Camp Endres and I greet each one of them as they walk through the door of the dining hall. We’re making a difference in the lives of so many kids. We are inspiring kids with diabetes to be all they can be. We are empowering them to believe in themselves. We are improving lives and creating memories that will last a lifetime.

My Diabetes

Bill ToweMy name is Bill Towe. This year represents my 40th anniversary since being diagnosed with type 1 diabetes. I was diagnosed at age 7 during a required sports physical before our little league baseball season. I never experienced any pre-diagnosis issues, it was dumb luck and timing that lead to my diagnosis.

With my upcoming 40th anniversary (June 27), I reflect on how living with Diabetes has affected me as a person and molded my life. A few specifics stand out.

Don’t be afraid

I was never afraid of it. Either out of ignorance or sheltered upbringing, I never thought diabetes would negatively impact my life. That was always the case, even though my endocrinologist would greet me by saying, “Well, you made it another year.” which infuriated my mother. I simply disregarded it. As a kid, the extra steps I endured each day were simply extra hassles that ended up becoming a part of my daily life. Today, I just think everyone does what I do each day to maintain good health—they do just what they need to in order to keep their own body healthy.

I owned it. I was never afraid to talk about it or show it off to my friends. In grade school I gave book reports and talks about it. I would show off the cool syringes and vials! I actually enjoyed the attention (go figure). Everyone knew I had diabetes and would watch out for me if something happened. Understand that back in the late 70’s, NOBODY had type 1 diabetes. I had a rare disease that most knew very little about.

Be human

I let myself be human. Being human, I did not always “follow the rules” with my disease. I broke the rules….a lot of rules, but I was always mindful when I took risks. Risks including: alcohol, missing an injection (being needle squeamish when you have diabetes can be difficult at times), not following my diet, not regularly testing, or being a typical, lazy teenager when I should have been exercising or counting carbs. These “missteps” were terrible, sure, but I learned a great deal from them.

My current doctor advises me to take the quality of life into consideration when I look to change something in my diabetes care. It’s important to be happy as well as healthy. A piece of cake on a special occasion can be fine, if I manage it.

Educate yourself

I educated myself. When I got older, I took a focused interest in what diabetes was and how it affects the body. I set up my own diets and exercise routines. I learned how certain foods affected me, how to manage calorie intake and eat measured meals that worked for me, not just ones that were published in a book. This gave me the freedom I wanted to “live.”

I found an endocrinologist that I loved…and still see him every three months. This is the key: finding a doctor that wants to understand and know me makes my ownership so much easier.

40 years later

I am 46 for another month. I have no complications from diabetes. My vision is 20/20. I am active. My kidneys are 100%. I am strong. I am healthy. I use the latest technology to control diabetes (OminiPod). This device has helped me get my A1C in the mid-5 range.

Take it from a veteran. If you are dealing with diabetes, it will not change your life if you don’t let it. With modern technology, you have the ability to live a complete, healthy, complication-free, full-length life. You can own your diabetes or it can own you. And really, I have never considered my diabetes a “disease.” The word “disease” has such a negative connotation. My diabetes is a part of me, like the color of my eyes, the tone of my skin, or the passion in my heart.

Take control of your situation one step at a time. You don’t have to do it all at once, but take that first step. I am a 40 year vet of diabetes and I am winning.

Camp Endres Junior 2015

By Kim Boaz Wilson

Kim Endres Jr 2015The summer camp sessions for 2015 have come to an end. It makes me sad in many ways. We’ve only been gone from camp for a few short days and I miss them all so much. We have to wait another year to have our whole camp family together again.

But what really makes me happy is knowing what we’ve accomplished this summer. So many kids made some pretty fabulous memories at Camp Endres Junior last week. New friends were made and old friends returned to the safety of our diabetes community.

Several campers accomplished some firsts, too. Whether it was putting in their own infusion set for the first time, giving their own shot for the first time, leaving home for the first time since being diagnosed with diabetes or discovering a spectacular world that can only be appreciated when you are right in the middle of it, Camp Endres campers totally ROCK! I am so proud of all of you and your accomplishments!

Camp Endres Junior 2015

At the end of the week, Jennifer, our real estate agent by day, camp photographer for the week, paid me a very special tribute and handed me nearly 75 love letters of sort, from campers and counselors! I am speechless! Thank you all so much for your kind words. You know I love you all and cherish each and every one of you. You all are truly a great blessing in my life.

So as the old song says (written by Lincoln, Ryan and Hunter)… the morning of camp, so excited, the flame of joy has ignited; it only comes around once a year, I’m so glad every time it’s here; until we leave our friends, and start to dream… of when Camp Endres starts again.

I can’t wait until next year!!! I love you all!!!

Camp NoHiLo Nurse

Nurse pocketBy Susan Boggs, MS, BSN, RN, NCSN, Putnam City Schools

The school day can be a daunting task for all children at times, and in particular for children with Type 1 Diabetes. As a School Nurse, I partner with children, parents, healthcare providers and teachers in an effort to provide a smooth transition from home to school.

My experience as a volunteer at Camp NoHiLo has allowed me the opportunity to learn the terms, techniques and most current evidence based care practiced by the Certified Diabetes Educators as they talk with children and their families regarding self management of their disease.

Developmentally, the 4 to 10 year old camper at Camp NoHiLo thinks concretely and desires to conform, to be part of a group. He/she certainly has the freedom to do this safely while at Camp NoHiLo – all the while learning from every activity – physical playtime, learning labs, lunch time, making new friends, etc. I gleaned details from each Certified Diabetes Educator whom I shadowed that will be invaluable to me as I return to school this year.

Reinforcing these basic management skills and using familiar words and techniques provides a sense of security for the parent as they leave their children with us at school and allows the child with diabetes the freedom to focus on normal activities of the school day without having to fret over something new regarding his/her diabetes management.

Among all campers, lunch was relaxed with the focus on eating, socializing and talk of the activities of the afternoon, not “good” vs “bad” foods, thus diminishing the risk of eating problems for everyone–those with diabetes and those without diabetes. This is a very important concept to carry over in school for all children, where peers can be critical of food choices.

Neither was the focus on insulin dose (albeit very important) as the camper was included in the process as was appropriate for his/her abilities. I learned about the function of a wide variety of insulin pumps thanks to the patience and expertise of the Certified Diabetes Educator/group leader whom I shadowed as we administered insulin doses. She was a master at dosing insulin without needlessly interrupting the camper’s lunch, play, and mingling.

The Executive Director provided me with an impromptu learning lab regarding the physiology of the “Honeymoon Phase.” My increased understanding of this phase of diabetes will help me talk with parents of the newly diagnosed child with accuracy and assurance.

A sincere understanding, compassion and respect for parent beliefs – spiritual, philosophical, and personal–while still holding firm to evidence based practice, was professionally demonstrated in all family interactions by the Executive Director and each member of the staff.

I believe the lives of those who attended camp and their families will be enriched, as will the lives touched by them. Each camper’s influence touches non-campers with diabetes, as well as siblings, family and peers without diabetes, in a confident and healthy manner, thus making Oklahoma a healthier place to live by changing the culture of diabetes. I look forward to starting a new school year and watching these young, resilient students with diabetes grow and succeed.

Growing up in Western Oklahoma

Ashley Oakes Baldwin and familyBy Ashley Oakes Baldwin

I’m 32 years old, and have had diabetes for over 25 years now. I was diagnosed in the second grade. At the time, I was the ONLY person in my county in western Oklahoma with Type 1 diabetes.

We spent two weeks in the ICU for treatment and education. At the time, my mother did not even know how to give a shot, so I was giving them to myself by the time we left the hospital. That’s just a glimpse into what some might call my stubborn charm. I’m pretty sure I injected the practice orange so full of tea, Diet Coke, and water that it was close to bursting.

The whole town welcomed us back home. We didn’t have a school nurse, so all the teachers learned how to manage my diabetes.

Fast forwarding to junior high, I was finally able to get an insulin pump, which changed my life. Finally, I was free from carrying syringes and insulin around with me.

I played in every sport that THS offered: Basketball, softball, and cheerleading. Specifically, softball was my passion, and I ended up landing a scholarship to Oklahoma State University to play softball there. I eventually graduated with a Bachelor’s in Nursing from the University of Oklahoma, and later graduated from Graceland University with a Masters of Science in Nursing as a Family Nurse Practitioner. I’m now married with a child.

Ashley at camp as kidI started attending diabetes camp back in 1992 when I was just nine. I really admired the doctors, nurses, and crazy dietitians (you know who you are, Dr. Hal). I hoped I could be that awesome one day. Having diabetes and attending Camp Endres are the two major reasons I’m in the medical field today.

I’ve been going to camp ever since then, other than missing a few years for college sports and last summer to have my precious baby girl. In fact, I feel like a couple of the years they had to make up a job for me. In all reality, I would be fine staying on as a camper forever, but I’m now on the medical staff team as a Nurse Practitioner. #Camperatheart

Diabetes does not define me. It is a part of me, just like taking a shower and eating. Most people I meet don’t even know I have diabetes unless I bring it up. It’s just second nature at this point, and I’m fine with that.

Interning to Support Others

By Cari Ledbetter

My name is Cari Ledbetter. I have had type 1 diabetes for 14 years, which led me realizing the passion I have for helping others with type 1 diabetes, and my internship with Diabetes Solutions of Oklahoma.

I recently graduated with a degree in Community/Public Health from the University of Central Oklahoma. I spent the majority of my college career working out in the community in the OKC metro helping organizations with health education for communities and populations in need.

Looking back over the years, I have had many experiences, both good and bad, when it comes to living with diabetes and managing it. There have been times when I felt great and on top of the world, and other times when I felt as if I were on my death bed while lying in the hospital. Most often times, I landed myself there from making a few unfortunate mistakes in taking care of myself.

I have learned so much through trial and error, and also from the help and support of my doctor, family, and friends. I truly believe that having these individuals available is a vital component in learning to live and manage type 1 diabetes, and I know I could have never made it to where I am now without each of them.

My ultimate goal is to help children and young adults with diabetes overcome and learn from the obstacles that they encounter. I know that this can be a less than perfect experience or a not so easy task to accomplish.

Realizing that type 1 diabetes is my true passion and following my heart to be a blessing to anyone I can will be an extraordinary experience. After a long search for an internship and possible future career with an organization that shares my vision for being a source of support for youth with diabetes and their families, I am happy to say that finding Diabetes Solutions of Oklahoma is a huge blessing and step in the right direction for my life.

I could not be more thankful to have such an opportunity to help this organization in their efforts and support for diabetes. I am looking forward to not only helping others with diabetes, but also learning more about myself and how I can better serve my community in supporting and educating others with type 1 diabetes and their families in this endeavor.

Life’s Unexpected Journey

By David Britton

JailHi, my name is David Britton and I was diagnosed with Type 1 Diabetes on April 2nd, 1998. At the time, the only thing that really upset me about my diagnosis was the fact that I was not diagnosed on April 1st which I felt would have been a fun day to celebrate!

After getting over a fear of needles and the realization of having Type 1 Diabetes things went pretty well for me. My twin brother had been diagnosed a few years before me so there was really nothing out of the ordinary when it came to learning how to take care of myself.

I felt like I was never burdened by having Type 1 Diabetes and I was always fairly active throughout junior high and high school. I participated in choir from 7th grade through my senior year. I began participating in sports my junior year and found out that I could swim pretty well and joined the swim team. I went on to swim in the 2004 state swim meet my senior year which for me was a fantastic journey and is definitely one of my fondest memories from high school.

Transitioning to college was also fairly easy and I continued my active lifestyle and discovered triathlons with my twin brother. I have since completed several sprint triathlons, an Olympic distance triathlon, and a half iron distance triathlon. Of course, having Type 1 Diabetes meant that I had to alter my training so that I could be safe by managing my blood sugars.

I graduated from the University of Central Oklahoma with a Bachelor’s of Science in Nutrition, Dietetics, and Food Management though I never pursue a career in that field. I also began to lift weights, though admittedly, I knew very little and therefore saw very little gains from my training. I discovered Crossfit in June 2012 and finally learned more about weight training, endurance, and mobility. I have competed in a few individual competitions and one team competition since I started Crossfit and I have certainly enjoyed this fitness journey.

Life does not always hand you things on a silver platter. Such is my case, though I wouldn’t blame anyone for my actions but myself. I was fired from my job as a cook and due to the circumstances surrounding my termination I was very upset and made some very poor choices that landed me in the Oklahoma county jail for 11 days. This is when my diabetes finally became a burden. I never realized the freedoms I had in choosing how to manage my diabetes in regards to insulin pumps, infusion sets, meters, test strips, insulin, or dietary habits. All of these things were taken away from me because I was in jail.

I was told when to eat and I was not given any options as to what I was eating. For example, this meant getting up at 3 a.m. to test my blood sugar and eating breakfast at 4:30 a.m. I was not able to be active because we were rarely allowed out of our cells due to staffing issues. The medical staff did the best they could to make sure that those of us with diabetes were taken care of but the plans were not individualized in the slightest.

I might have been the exception because I had an insulin pump; however, my blood sugar stayed high almost the entire time I was in jail. The sliding scale that was used for those taking injections did not seem effective to me and I ignored what I was told and even began telling the medical staff what I would be giving for corrections because of my bolus wizard option on my pump. As I mentioned earlier, all the options I had for managing my diabetes were taken from me.

Those inmates in jail who were on injections were using NPH and Regular insulin, if you’ve even hear of those insulins; nothing else was available. Heaven forbid if you were using anything else before you were in jail! In fact, for one day when my infusion set needed to be replaced I had to go on the sliding scale with injections until a replacement set was brought to the jail for me. Most of the other inmates with diabetes were overweight and had very sedentary lifestyles due to being in jail. This is certainly not the lifestyle I wanted to be living!

Since being released from jail, I have realized just how fortunate I am in being able to manage my diabetes the way I feel is best with the help of my doctor and those from Diabetes Solutions of Oklahoma!

I have no doubt that being active with triathlons and Crossfit that I can manage my diabetes with much more ease. As I’m sure most readers know, Type 1 Diabetes may or may not be the easiest for you to live with but I’m here to tell you… being in jail makes life with diabetes downright miserable so make wise choices!

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