fbpx

Lyfestories: Jon Tijerina– Outsmarting His Diabetes

3 years ago, my persistent nerdiness brought me from Texas out to sunny California to study at Stanford School of Medicine. I was surprised to find incredible research and developments not only at the medical school, but in the overwhelmingly supportive and innovative diabetic community!

After years of feeling like I had to go it alone, in and out of diabetic burn-out and meal-time anxiety, I finally found the encouragement and positivity I needed to refresh my mindset and management.

Diabetes has been part of my life for as long as I can remember. I’ve seen the full gamut of treatments, from my grandmother explaining that her “medicines” came from cows, to my father’s diagnosis and all the finger-pricking, pill-swallowing, and (eventual) groan-inducing injections that followed. There had to be a better way.

13 years ago, I was diagnosed with Type 1 Diabetes after a family trip to Guatemala (which I mostly spoiled with my constant trips to the bathroom and incessant napping). Thinking I had to resign myself to pinching together the little fat I had to inject the rest of my life, I was all-in when offered the chance for an insulin pump and CGM in college.

The technologies weren’t exactly a silver bullet (big shout out to CGM alarms for sleep loss), but they instantly made running collegiate track and maintaining my glucose during times of stress (i.e. college finals) more manageable.

I never expected that 5 years after going on a pump system, I would be “jailbreaking” my own insulin pump to receive instructions from an incredible (but NOT FDA-approved) app called Loop. But here we are!

After a lot of research, a lot of discussion with my endocrinologist, and a lotttt of CGM sharing with my mom (mistake), girlfriend and basically anyone who would be ok with getting annoying alarms for me, I decided to download this software that allows an algorithm on your phone to send temp basals to your insulin pump…. all by itself… every 5 minutes!

The Loop system takes your CGM readings, insulin-on-board, and carbohydrates-eaten into account when making its calculations and can even predict when you’ve miscalculated your carb intake and make an automatic correction! This functions similarly to the FDA-approved Medtronic 670G hybrid closed-loop system (the only FDA-approved closed-loop to date) that has recently become available, although it allows you to choose which CGM you prefer and is highly configurable. Again, Loop is NOT FDA-approved (see below for disclaimer).

3 weeks after beginning my journey with this closed-loop system, I have to reiterate nothing is a silver bullet for diabetes management. The system requires some computer and programming competency, and like any computer program can have malfunctions. Electronics and connectivity come with their own troubleshooting, but I couldn’t be happier with how this system has drastically reduced my mental workload (and the sleep!).

After a lifetime being surrounded by diabetes management, I feel incredibly lucky to be riding the next wave in treatment. A huge and profound thank you to the diabetes community for coming together around issues in our treatment, and solving the problems we know need to be addressed now!

*The opinions expressed in this blog do not reflect professional treatment recommendations, the opinions of Stanford University, Stanford School of Medicine, or Stanford Hospital and Clinics. Any changes to diabetes management regimes should be discussed with the patient’s endocrinologist or primary care doctor. Any persons adopting a non-FDA-approved system of treatment do so at their own risk and should proceed with appropriate caution.

Jonathan Tijerina is a 3rd year medical student and research coordinator at Stanford School of Medicine. He teaches the med school course, Diabetes 101 for Healthcare Providers, and started the Bay Area Running Group for diabetic teens learning to manage their glucose on long running ventures. IG: Jonathan_David_Tijerina

 

Real Talk with Dave: You Don’t Know What It’s Like To Feel So Low

 

            Each day, we are each given a choice as Diabetics. A choice to take the best care of our health or the choice to be laid back and not as careful. Diabetes is hard work and sometimes, we go through a burnout phase where we may be care free of our Diabetes and not put as much focus on it as usual. However, each day, whether we work hard at our T1D or not, we each face lows, highs, sick moments, and feelings that are indescribable. The main focus I’d like to discuss is primarily on lows.

Lows are the absolute worst feeling a Diabetic can get. Low in terms of blood sugar, energy, focus, strength, and mental capacity. Lows take so much out of us. They make us feel like we’re dying in a sense, and yes that sounds a bit dramatic, but that is the honest description that a Diabetic will say it feels like, just ask any person with Type 1 Diabetes. I often say that lows “hurt” and that could mean a variety of things. My body, my muscles, my bones, my mind, or even my emotions. Lows have a way of playing with the person who it decides to attack.

As a Diabetic of 9 years, I have learned several different ways to cope with and manage lows in all sorts of settings, as each low is unique and different, yet all have some similar symptoms. Throughout the years, I have tried to explain to people who don’t have Diabetes what it’s really like to have a low blood sugar. Though many people just don’t understand, some do try and empathize with me and see how horrible they can be. As much of a description I may give, I always mention though that a non-Diabetic will truly never know what it feels like to have a low, as much as I try and describe it. The pain, the fear, and the shock it has on the person is something I wish nobody had to face.

Some lows are better than others. Low blood sugars in the 60mg/dL-70mg/dL range are not so bad, but anything below 50mg/dL, that’s where things can get scary. Severe lows contain symptoms such as shakiness, sweating, fast heart beat, fear, panic, nausea, lethargy, etc., just to name a few, but, as mentioned, each low is different and each Diabetic can feel their own unique symptoms. I think most of us know the cause of a low blood sugar, but for those who don’t know, intense exercise, too much insulin, and not enough consumption of carbohydrates/sugars are the main ways low blood sugars come to be.

The reason I am writing about lows are to mainly spread awareness on this issue. I can remember countless times in which I simply avoided doing certain activities or sat in fear during a certain situation (such as classes, work, travel, etc.) as I was constantly worrying about going low. High blood sugars are different in the sense in which you may feel very sick still, but you have a larger and somewhat safer timeframe to treat the blood sugar before it gets too serious. Yes, I have had Diabetes for 9 years, but I almost feel as though I will never fully get over my constant fear of lows. Lots of people have shared over time that they are very afraid to go to bed each night as they are worried they’ll go low and not be able to wake up from that low and that is exactly why I am writing on this specific topic, to share what us Diabetics truly go through on a daily basis.

Diabetics are fearless and I think it’s safe to say that we put up with so much and have gone through so much over the years of being Diabetic. We face so many scary and life altering challenges every moment of every day, most of which goes unnoticed, that is why we must continue to spread awareness, seek support from as many people as possible, and create a safe environment in which if emergencies do arise, we will at least feel as though we are in good hands.

Diabetes is tough, but we are strong. Diabetes is scary, but we are brave. Diabetes is a big deal, but we are so much bigger than this disease.

Live well,

Dave

 

LYFESTORY: Lauren Plunkett, Type 1 Diabetic RDN, CDE, & Fitness Instructor

I’m a Registered Dietitian Nutritionist (RDN), Certified Diabetes Educator (CDE), fitness instructor, public speaker, and proudly live my life as a healthy person with Type 1 Diabetes for more than 24 years. Like many of you, my story began with the realization that I needed to change my eating habits and exercise routine. I also needed to wholeheartedly embrace the fact that I have type 1 diabetes, but most of all I simply wanted to live better.

 

I could define myself in many ways based on my experiences, but most of all I am determined, strong-willed, and not a quitter. So, I raised the bar on myself and found a way. Now, my role is to pay it forward and share my knowledge.

 

My professional goal is to support people with T1D of all ages with nutrition education specific to their individual needs with regular exercise. Nothing makes me more excited than to work with athletes with T1D! I am very driven to provide education that I would have found valuable when I was a teenager. My philosophy is evidence-based through sports nutrition research but also from many years of personal trial and error while becoming more physically fit.  

 

One thing I have learned is that people with T1D are all at different stages of glucose management. Some may be thriving with what seems like effortless blood glucose control, while others struggle with the basics. Keeping track of test strips, dosages, and technology, can be so overwhelming! I believe in meeting a person where they are in the learning process because it’s so easy to cave under the pressure of perfect nutrition and an impressive A1c.

 

T1D management is a partnership within all the other aspects of what makes us who we are. Hemoglobin A1c does not define us. We are individuals first. Individuals with unique nutritional needs, interests, and fitness goals.

 

When I present education I often say that I did not become a nutrition expert the very moment I was diagnosed with T1D. It takes a massive amount of effort and will-power to master diabetes and I had my own struggles for years before finding my method of success. And that’s when lifelong health maintenance begins. This is one reason why I see myself in every person I meet with T1D and I am such a fan of anyone putting in the work.  

Social Media :www.lpnutritionconsulting.com

Instagram: @vegetitian

Real Talk with Dave: My Thoughts on T1D this Past Year

A lot has happened within the last year in the Diabetic community and we are getting so close to finding a cure. I am filled with hope each and everyday as I go about my own individual duties in the Diabetic community, as so many people are doing good each day in changing the way we manage our Diabetes and spread awareness. So many are dedicating their own lives to encouraging, supporting, and helping other fellow Type 1’s one way or another.

That very aspect fills my heart with happiness as I love seeing kindness in the Diabetic community.

Within the last year, I have seen more and more faces joining the online aspect of the Diabetic community. Lots of great opportunities have come from that and have been changing Diabetes management in such a positive aspect!

As part of my contribution to the Diabetic community, my main focus is on making Diabetes look “cool” in a sense by providing fun and creative content on my Instagram account, @type1livabetic, for others to enjoy.

I try and engage others by asking Diabetes related questions, post a photo about a relatable issue or struggle in Diabetes management, etc. By doing so, I have come across so many new accounts/followers who are wanting (and striving!) to make a change and a positive impact, even if that means they post a photo everyday. And hey, that is more than enough! Just by making that effort to spread awareness through a photo is more than enough.

Along with that, a lot has changed in the Diabetic world. As it is 2017, so many new advances in technology for Diabetic care has become a reality to so many that a cure seems only a mile away! Nowadays, many use Continuous Glucose Monitors (CGMs), Apple Watches with Dexcom integration, Insulin Pumps, and the list goes on!

These devices haven’t always been around, which makes them pretty special and as some may like to call them, “life savers”.

I totally agree! Just by seeing that now we can view our blood sugars on our phones or watches tells us that things are only getting better. Pretty soon, there will be a medical breakthrough which will allow Diabetics to practically ditch their daily duties as a Diabetic while a very advanced, new device does all the work, and boy oh boy, what a relief that will be! Then, the only thing that will be in the works will be the real cure that will end T1D once and for all, literally!

Community has been a big deal to me lately. I have noticed that though we have family members and friends who are in constant support and are willing to help us in any way possible, if a non-Diabetic doesn’t truly know what a low or high may feel like or what it’s like to have needles become a new normal to their body every moment of every day, then they really don’t know what T1D feels like. That is why I depend so heavily on the Diabetic community for my actual Diabetic support. I seek support and understanding from those who are dealing with the exact same thing as me.

That is so comforting to know that messaging, calling, or visiting with another Diabetic for support is just a click away!

I couldn’t be more grateful for the community and all the amazing organizations that don’t leave us hanging by providing events, support groups, and other amazing activities that help connect and bring us Diabetics together, as well as stick together!

So to sum up, lots of great things have happened within the last year for us Diabetics. As we wrap up this year and start a new one, I can’t help but remain hopeful for a better tomorrow where we can finally put T1D behind us!

Live well,

Dave

Real Talk With Dave: Achieving Your Goals With Diabetes

It has been said over and over again, but you can do what ever you set your mind to! Since the day you were diagnosed, you probably were told by friends, family, and other loved ones that you can still lead a normal life and do what ever you want with Type 1 Diabetes. When I was first diagnosed, I felt like I was at the bottom of a huge boulder that I had to overcome and climb at some point or another just to get to the top. But I was so unsure as to how I could get to the top, all while lugging a heavy weight on my shoulder, my Diabetes. Well, it just so happens that 9 years later (going on 10) I have definitely discovered that it is possible to get to the top and accomplish all the goals I have set for myself. That goes for you as well. Set your goals and dreams, because you are going to achieve them at some point or another, Diabetes or not.

Over the course of my Diabetic journey I have seen so many others who face T1D grow and accomplish so much. Every day there is someone new in the Diabetic community that is going above and beyond in doing what they love, and not slowing down one bit because of their Diabetes. Sure we all get our bad days where Diabetes seems so impossible to beat, but remember, it’s the good days in which we are to make the best out of them and live our purpose. So many people have gone on to do great things- becoming musical artists, doctors, actors, the list goes on- but what makes it so special is that they were able to get to those points in life, all while going through T1D. Was it difficult? Yeah, I’m sure it was. Many non-Diabetics may not realize how difficult it must have been, given their Diabetes, but for those who are aware and know how much Diabetes tends to take out of a person, I’m sure we all applaud them for doing so.

 

The thought of never being able to do many things anymore when first diagnosed is a common thought most people think of while lying in their hospital bed on day 1 of their diagnosis. Little do they know that life is just about to get a whole lot better. More opportunities come from Diabetes. More knowledge, responsibility, and (my favorite) empathy. Knowing the true struggle someone may be facing and being able to relate to the person is one of the coolest things you can have as instantly, you get that person and are able to help each other out. Diabetes also provides friendships, social connections, and a community to be a part of and belong to. Guess you could say we’re some pretty cool people, am I right?!

I do the things that I want to do, because the thought of having to say no to doing an exciting activity because of Diabetes does not sit well with me.

When I want to go out on an adventure, I do stop for a second and think how I will deal with my Diabetes in that event. However, I do the things that I want to do, because the thought of having to say no to doing an exciting activity because of Diabetes does not sit well with me. I don’t ever want Diabetes to determine how much fun I have or what I set out to do in life, socially, academically, etc. All the activities I have done in my Diabetic life, I have done them. Some were more difficult than others, but either way, it was a learning experience in which I was able to gain a whole lot. For me personally, seeing a Diabetic do something so awesome, such as running a marathon, playing a sport for a famous team, or killing the game everyday in a really cool job is so inspiring to see and we all have to keep beating the odds and proving the stereotypes wrong.

So I leave you with this, do what you love and do what you want, because you only get this one life to live, so make the best of it! If you want to be a pro surfer, do it. If you want to be a doctor, do it! If you even want to be the next CEO for one of the biggest companies on earth, DO IT! And show everyone how you did just that at the same time you were managing your Diabetes. Prove those stereotypes wrong and show them who’s boss!

 

Live well,

Dave

Empowerment and T1D

I have always been drawn to empowerment. Growing up, I loved the theatre, I loved the ballet, I loved all forms of performance. I think that the primary reason for this was because of how powerful and confident the performers always seemed.

From a very early age, I knew what my purpose was. I was meant to inspire and empower others in this life…. somehow. To me, that was a fact that was never second guessed. The challenge, as it would prove itself to be going forward, was to find out how exactly I would manifest my purpose.

I was diagnosed with Type 1 diabetes at the age of fourteen. I have lived with the disease for over half of my life now. For a while, my own ability to embrace my inner power felt like it had been robbed from me.

I began to tell stories. It was my way of reaching out, despite my antisocial nature. I told stories through acting in film & television, which eventually escalated into writing fiction, screenplays, and journalism. I told fictional stories as well as the real stories of others – but all the while, my own true story was being written simultaneously.

Organizations such as JDRF and Beyond Type 1 gave me the chance to connect to others who had similar, yet very unique, inner struggles. I became involved in advocacy initiatives that allowed me to engage with these people and to share my own experiences. I began to write for Beyond Type 1, helping others share their own stories with the world. I felt the immense gratification from both sides of the coin, theirs and mine.

This was empowerment, I thought – impacting others with chronic illnesses was, as I realized, what made me feel alive.

The day that KNOW Foods partnered with Beyond Type 1’s Bike Beyond initiative was the day that the puzzle pieces that made up my life would finally and seamlessly come together. I tried this new and interesting healthy food company’s product – low-carb, gluten-free, wheat-free, and non-gmo?! It did not spike my blood sugar and it gave me a truly sustaining energy throughout my days. I knew I had to become a part of this – and so I did.

KNOW Foods’ Founder & CEO, Steve Hanley, recognized my purpose. He recognized how my experiences, leading up to this, would make me the perfect candidate to take on the title of Senior Director of Alliances. I would take the helm would it came to partnerships – with an emphasis on nonprofit organizations that focus on chronic illnesses/disorders such as Beyond Type 1, Beyond Celiac, College Diabetes Network, Autism Hope Alliance, and the list will go on!

I made a vow to myself after being diagnosed with Type 1 diabetes. I vowed to make my #1 priority to live my healthiest life, always and forever, and to help others do the same, even those who were not living with a chronic illness. Everything else would come second.

Today, I can confidently say that I am living out my purpose – it simply took realizing that Type 1 diabetes was the center piece of my puzzle –  the most important piece.

diabetes and empowerment

Real Talk With Dave: Diabetes is NOT a Diet

When first diagnosed, it may seem as though you are on a diet that is going to restrict you from eating what you once loved. But that is not the case what so ever! On the day when Diabetes comes crashing into your life and presents itself as the worst thing yet, one may feel confused as to what this disease is like and how certain foods will affect you and your daily routine.

When I was first diagnosed back in 2008, I remember feeling scared to eat because what was once an easy thing to do completely turned into a complicated challenge in which I had to measure all my food, eat a balanced meal with the proper nutrients, and calculate the carb and insulin ratios. Before I was diagnosed, I remember having the biggest sweet tooth out there and when the day of my diagnosis came, I felt like that was instantly taken away from me, all to realize that wasn’t the case, at all.

I know that after going to the Endocrinologist for years, they tend to lecture you and make you feel that you should always be eating the proper foods, but every now and then, a cheat day is necessary in order to live a happy (and healthy) lifestyle. If not, burnout can happen from trying to eat all the right foods all the time. I’m not saying that you shouldn’t care for your diet and watch what you eat, but remember, Type 1 Diabetes is most commonly found in children, teens, and young adults who every now and then just need a cheat day or some time to not feel deprived of the foods they once ate freely. Yes, you do need to be as healthy as possible to avoid Diabetic complications later in life, you just need to find balance between your diet and exercise pattern. When you do, you can eat what you like, along with a healthy diet that is best of you.

I went through a stage in my life in which I chose the path of a crash diet in which I would not even touch foods that were high in sugar or where unhealthy and processed. I was a little too careful with my diet and was missing the big picture. I remember at one point, I had it with this diet and missed eating the foods that I used to eat. After some reconsideration, I though to myself how I can still choose to live a happy and healthy lifestyle, all while eating “junk food” in moderation from time to time, as well as not worrying too much on how my numbers were and trying to make them perfect. That wasn’t living.

And I wanted to live, not for the future, but for the present.

I wanted to enjoy each day without living in fear of trying to eat the right foods and have, what I thought were, perfect blood sugars. Yeah I was healthy, but I wasn’t all that happy.

Every now and then you come to a point where you will have to decide what type of lifestyle you truly want, depending on your personality and current situation. Diabetes can be tough when you try and over plan and set limits to yourself. Finding a common balance between what you eat and how it affects you can help when trying to regulate your Diabetes as a whole. It is a lot of work and there will be periods of time in which it is mostly trial and error by simply seeing what works best with your blood sugars, but when you finally feel as though you have figured it out, it will truly feel amazing! You can do it all, eat what you want, not restrict yourself all the time, but just eat in moderation the foods that may not be the stereotypical diet for a Diabetic.

So go ahead, eat that ice cream. And enjoy it. Because even with T1D, you CAN eat ice cream.

Live well,

Dave

The Unmatched Courage That Comes From Chronic Disease

A little over a year ago, after resisting the idea for almost a decade, I finally started working with a type one diabetes (T1D) focused non-profit. T1D was already 100% of my life and I hadn’t wanted it to become even more, but after almost two decades with the disease, I gave into the fact that it was my purpose to make an impact in the lives of other people living with T1D. The first few weeks almost broke me down. Every day, I heard stories of people dying from missed diagnoses, from complications, from lack of access to insulin. I had to learn how to never become numb to it, but forge ahead anyway. The work was too important.

Last summer, after absolutely hating the idea of writing a book about living with chronic illness – I didn’t want to be seen as a sick person – I wrote it (it publishes this September!). I realized that I could use my voice to give hope to others, but I was terrified to never be able to get away from people knowing I had a chronic illness. I put myself out there anyway and ended up writing about the superpowers we gain by living with chronic disease. I became the lucky one here – it has been both rewarding and immensely humbling to be able to connect in such a deep way to people who are managing so much. The chronic illness community is indomitable.

Over the years, as constant debates about healthcare, ever-increasing costs of insulin, and clashes with health insurance have become more and more common, all I’ve wanted to do is turn away and not deal with it, but it’s just not a choice.

I have too much to say, too much knowledge of the industry and the system, and too much ability to affect change to be quiet.

I studied federal healthcare policy at Georgia State University and managed to fundamentally change the structure of the healthcare plan of a Fortune 500 company when I caught that it wasn’t going to work for any of its 15,000 employees who lived with chronic conditions. It has been important to me to get involved with the policy that affects us all, and I have become quite the thorn in my local representatives’ side. We can all affect change with our voices.

Like us all, it was what I have been through that gifted me my passion. My T1D story started on Thanksgiving Day when I was ten years old; I ended up in the intensive care unit of Seattle Children’s Hospital. In the months leading up to the holidays, I had lost nearly thirty pounds on a 5’4” frame that didn’t have the weight to lose; multiple doctors told my mom I was doing it on purpose to somehow better fit in with my peers. I have flashes of memories from that time – trying and failing to eat a single scrambled egg but downing 2-liters of Sprite daily. Barely being able to walk up the hill to my school’s gym. Lots of lying around in bed.

At about four o’clock in the morning on Thanksgiving day, my mom tried, unsuccessfully, to wake me up. My family carried me to our old, boxy Jeep Cherokee and tried to put me in the back seat, but I couldn’t sit up on my own. My entire body hurt. So they put me in the way back, the place I always begged to sit but wasn’t allowed to because of the lack of seatbelts, and we pelted down the highway toward the closest hospital, Overlake Medical Center.

Moments after I was carried into the emergency room, a nurse came over to check on me. She smelled my sweet breath, which should have been a dead giveaway to all the doctors who said these health issues were my own doing. She instantly diagnosed me with T1D.

After being somewhat stabilized in the emergency room, I was put into an ambulance and taken to Seattle Children’s Hospital, where I spent two days in the intensive care unit, then another two as an inpatient, learning what had happened to my body, how to check my blood sugar levels, and how to give myself insulin shots, of which I quickly found out I was absolutely terrified.

I practiced giving shots on an orange first, then on my teddy bear. When my next step was to practice on my mom, to give her a shot of saline, I completely broke down. I could do everything else. I could prick my fingers. I could learn to count carbohydrates. I could skip regular soda. At ten, when everything was an adventure, I could adjust to this new life. But I could not hurt my mom, and I could not hurt myself. The nurses tried to explain that this was the only way to keep myself alive and healthy, but all I saw was my purposely shoving a sharp object under my skin and it broke me.

For the first year after diagnosis, my mom still gave me my shots. Gadgets and technology have since made my life easier, but to this day, if my routine changes, if I have to use a new type of needle, if my insulin pump infusion sets change design, you will find me in a puddle of tears, trying to give myself a pep talk that it’s not going to be so bad. It’s never the pain – the needles don’t hurt that much. But the little bruises and scars they leave are tiny reminders that this is never going away; They are visual cues that at the end of the day, shoving these needles into my stomach, backside, thighs, and arms – it isn’t normal. Needles are and will always be a part of my everyday existence. I remain scared of them. I use them anyway.

It got me thinking – how much in my life has probably been affected by that every day practice of bravery? How many other situations have there been where I was scared of the THING but I did the THING anyway, because that was what I was in the practice of doing? I was a blunt, headstrong little kid, but as I’ve grown up, how much has T1D taught me to barrel ahead even more so than I ever could have done without it?

I can confidently say that I am often terrified.

All the time. I take on projects and jobs and life hurdles that no one in their right mind should take on all at once. But T1D taught me how to be brave, how much I can handle, and beyond that, it taught me how to use my voice to fight for what I believe in. I had to learn how to be an advocate for myself, and I’ve been able to turn that into knowing how to be an advocate for others.

Having a chronic illness is not a great thing. There’s no spin there. But the courage we take from it is unmatched, and for that I feel lucky. This disease has forged me into the person I was meant to become – one who can affect change, use my voice to change other people’s lives, and fight for what I know is right.

How Camp Ho Mita Koda Has Impacted My Life

A lot of things have impacted my life, few as much as Camp Ho Mita Koda (HMK).

I first went to camp sometime in the late 1980’s for a picnic that was put on by the doctors and staff at Case Western Reserve University and Rainbow Babies and Children’s Hospital. I was a few years into my diagnosis of type 1 diabetes and was a participant in the Diabetes Complications and Control Trial (DCCT), a landmark study looking at the long term effects of tight blood glucose control vs. “standard” treatment which at the time was less intensive. The staff thought it was a way for some of us participants to meet and to thank us for our dedication and commitment to this research study. This first day on the camp grounds felt very good to me. I had been an advocate of outdoor activities my whole life and this was the perfect “playground”. I had just been in the process of changing careers and was recently accepted into the Ursuline College School of Nursing and asked Dr. Saul Genuth, the DCCT chair, how I could get involved with camp. He linked me to Dr. Marc Feingold, the medical director at camp at the time, who set me up as a dispensary aide for the next summer during my freshman year at Ursuline. Little did I know that almost 30 yrs. later I would still be involved in the special place that became my second home.

The first five years at camp were the best. This is because I was able to spend nine weeks each summer physically at camp. The second year I was asked to be the dispensary (healthcare center) charge. I, along with a nurse named Betsy Brown, who was my mentor and a DCCT coordinator, interviewed many candidates and we hired my staff. I worked with camp director and storyteller Rich Humphreys and we ran a capacity camp for three years. During this time, I has some of the best times of my life, meeting friends who are still people I communicate with regularly today including Rich Humphreys, who remains one of my best friends. Rich received the Lilly 50 yr. diabetes award eight years ago and is still a role model for so many youngsters with type 1.

In 1993 I met a dietary intern from Metro Health Medical Center in Cleveland who was on her final rotation of her internship.

We spent two weeks together at camp which began a relationship that ended up in marriage five years later.

We were married at Notre Dame College of Ohio and had our wedding reception at camp HMK on May 23rd, 1998. It was truly a special day and I can’t believe it’s been 19 yrs. The final year of the five that I lived at camp, Rich decided to take his three teenage children around the county in a motor home so I directed camp that year. I had the best staff ever and will never forget that summer. It was truly magical.

The next 15 or so years I’ve remained involved with HMK in several different roles. I was the camp health care manager and along with medical director Dr. Douglas Rogers from the Cleveland Clinic Children’s Hospital, kept the program safe and effective working through all of the changes to diabetes management. I’ve continued to direct other camps along the way; we did teen weekend for kids too old for camp (last done in 2016), volunteered for a camp for kids with cystic fibrosis, directed type 2 diabetes camp for seven years and directed a camp for kids with PKU, an inborn error of energy metabolism for 14 years. I continue to sit on the steering committee and help out whenever I can. My wife Jill and I now have three teenage daughters who grew up at HMK.  I would often bring them along when they were younger and put them in cabins with the campers, it was very special to them who obviously wouldn’t be on this earth if it wasn’t for HMK. I could go on but need to run to work. I am currently a certified diabetes nurse educator at Case and Rainbow where I started currently coordinating diabetes clinical trials and am still a participant in the DCCT/EDIC study.


Camp Ho Mita Koda was established in 1929 as the world’s first summer vacation camp for children with diabetes.

It was founded by Dr. Henry John and his wife, Elizabeth (Betty) Beaman, on land that was originally their family’s summer cabin, in Newbury, OH. Dr. Henry John, a MD who graduated from Western Reserve School of Medicine (now Case Western Reserve University) in Cleveland OH, was also a founder of the American Diabetes Association and the first physician to administer IV glucose. He was one of the pioneers of insulin treatment for diabetes. Dr. and Mrs. John envisioned a summer camp where children with diabetes could learn how to manage their diabetes while enjoying the company of other children. In the summer of 1929, Dr. and Mrs. John took six children to their summer cottage and continued to direct Camp Ho Mita Koda for the following 20 years! The 72 acre camp now caters to children ages 4-17 with diabetes. Its management was recently taken over by a new nonprofit called the Camp Ho Mita Koda Foundation.


You can support Dr. and Mrs. John’s 88-year-old vision by visiting: http://www.chmkfoundation.org/

To participate in the Camp Ho Mita Koda Foundation’s first fundraiser please visit: https://rafflecreator.com/pages/15457/camp-ho-mita-koda-cash-calendar-raffle#

Facebook:  Camp Ho Mita Koda Foundation, @CHMKFoundation

Mother of Three: Two Kids, and Type 1 Diabetes

Hi! My name is Charlotte, I live in Belgium, am happily married, and am a mother to two beautiful kids.

I was diagnosed with type 1 diabetes at the age of 15. It has been more than 22 years that I have been living with this chronic disease. The first 15 years I helped myself with injections and blood sugar fingerpicks. After that, I finally felt ready for a new chapter in my life : “being a type 1 mother”.

The doctors told me becoming a mother was possible with type 1 diabetes, as long as my blood sugar levels are around 6% (A1c). I was further recommended to change from my usual insulin injections with a pen to an insulin pump.

I was ready for motherhood, but not for the insulin pump.

A device that would make my disease much more visible, compared to a pen which I could hide from everyone. How would I ever go to the beach in my bikini with an insulin pump? Yet another hurdle which took me some time to overcome. But becoming a mother was stronger than my fear of an insulin pump, so I gave it a try.

Three months later I felt myself on top of the world, reaching my a HA1c of 6.2 and becoming pregnant. When I look back at my pregnancy, keeping my blood sugar levels at that level took a lot of energy and generated a lot of stress. However at that time I was living on a pink cloud, as I was really looking forward to that precious moment having my baby in my arms.

This moment of glory and happiness arrived two times to me. First there was my beautiful son named Louis. Three years later I got my wonderful daughter, Célestine, who made me proud for the second time in motherhood. Both are happy and healthy.

Last year, three years after the birth of my daughter, I was feeling down, very tired and had a lot of pain in my belly and intestines. I was suffering from a lot of fatigue and my blood sugar levels were catastrophic.

Four to five hypoglycemia a day were a daily routine. I felt myself so tired and my body needed to rest and to reduce my stress levels significantly.

After consulting my doctor, we decided to take a step back from my hectic day to day life of being a mother of two lovely kids and supporting my husband with his career (thus requiring  frequent traveling and a 13 year carrier in an American multinational, where the stress levels were a daily part of my job).

Due to my doctor’s assessment, a Leaky Gut Syndrome, malabsorption, and my autoimmune disease, I was forced to change my lifestyle (a diet with gluten-, lactose- and egg- intolerances).

By changing my habits and diet, I reached 2 goals: first to become more energetic and pain free, and secondly to stabilize my blood sugars. From that moment, I felt myself more comfortable to embrace my diabetes!

And for now, I am the mother of three: Louis, Célestine and my Type 1 diabetes.

My ambition in the future is to coach and help other diabetes patients in the future in Belgium. I want to do this by showing people that by changing a few lifestyle habits we can get a lot more in this life!

Here in Belgium, diabetics are so afraid to talk and to show the environment about this topic, and I really want to change this. A few months ago , I started an Instagram account to inspire others and motivate others with this disease…. “Charlotte Celebrates life with diabetes type 1 “

Feel free to follow me on Instagram @charlottecelebrates

The purpose is to help myself and others to Celebrate life, by motivating and chowing some color in this sometimes colorless world of diabetes.

Interests - Select all that apply