Survivor’s Guilt: Losing My Brother to Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Katie Lesley

I was diagnosed with type 1 diabetes (T1D) when I was eight years old. I was about to attend a new school, and within the last few weeks of summer, I found myself learning to dose a medication responsible for being my lifeline. This diagnosis meant injecting needles I’d hope wouldn’t hurt every single time, and pricking my fingers at least four times a day. Although it was a heavy reality, I felt like I didn’t have time to react poorly. I just needed to learn how to keep myself alive every day. At eight years old, that’s a daunting task, but I tried to carry the responsibility with strong shoulders and usually had the perspective that it could’ve been worse. When I was diagnosed, I shared a hospital room with a girl about the same age. She was practically in a full-body cast from a tragic car accident. Later, I found out that her family had all died in the accident, but she didn’t know that yet. Learning how to inject myself didn’t seem so bad with my family surrounding me and knowing I’d be returning to the comfort of my home soon. I found myself thankful, and almost 30 years later, I often reflect on how T1D has changed my life in countless ways.

A Steep Learning Curve

My first experience with DKA (diabetic ketoacidosis) is still quite memorable. I had the flu and suddenly couldn’t stop throwing up in the middle of the night. I remember being in the dark, on my bed, with my mom holding a washcloth to my head and my older brother staring at me; he was there for support but also worried about me. I hadn’t been this sick since I was diagnosed, and I knew this wasn’t normal. Even though I felt so horrible, I was unwilling to go to the ER when my mom said it was time to go. I was just scared. After a lesson of what DKA was and its seriousness, I felt like it was my fault. I didn’t want to talk about it when I was finally released, and that guilt remained with me, resulting in not much conversation about it.

My family took the approach that they didn’t want me to feel abnormal or too different than any other children, and I felt like I had to be independent and take care of myself. That led to me not sharing too much about my T1D, and I just got used to managing it. Even though my brother and I shared an extraordinary relationship, I felt like my T1D separated us because he didn’t truly understand what I battled every day. That all changed, though, when he was diagnosed at age 22.

Ties That Bind

I vividly remember him calling me and saying, “I can’t believe my baby sister has been such a badass all these years, and I didn’t even realize what you had to do every day!” I laughed but was relieved I could share this flood of thoughts, feelings, and frustrations with my big brother. Even though I got to share all these conversations with him, I had such a mix of emotions learning he was diagnosed. I cried for him because I knew what he would have to live with, but I also felt like we could be each other’s strongest ally. We had a tradition of calling each other every time we left the pharmacy and joked about the insanity of costs associated with keeping ourselves alive. Nick’s sense of humor often saved me from negativity, something I’m always grateful for.

Healthy

Image source: Beyond Type 1

But DKA found its way to Nick, too. He had just recently fought off the flu, and I had told him to make sure to stay hydrated. The flu returned, and he called me on a Sunday, his normal routine. I was stuffing my wedding invitations with my best friend, and our call was short. He told me he didn’t feel good and was tired. I told him again to stay hydrated, I loved him, and to call me when he felt better. A couple of days later, that call came instead from my sister-in-law telling me Nick had suffered a heart attack and was in a coma. After an agonizing flight across the country to get to him, the doctors ultimately explained he suffered too much brain damage, that he had no brain activity, and told us the dreaded “there’s nothing else we can do.” His cause of death was DKA, which led to a heart attack and brain damage. Nick was only 28. He had two small children and his whole family were supposed to be at my wedding in just two months. He had a lifetime of happiness ahead of him, and DKA took him quickly, without any remorse.

I had severe survivor’s guilt. I felt it should’ve been me, I didn’t have kids to live for, and I had been hospitalized for DKA a few times and survived. I had T1D much longer than Nick, and I should’ve told him a billion times how important it was to be extra vigilant when he got sick. I couldn’t believe it took his life. I felt angry that we didn’t treat my disease differently when I was growing up; it should’ve been more of a topic of conversation rather than taking the tactic of protecting my feelings so I didn’t feel different. An emergency plan should’ve always been in place as opposed to having to just react to a bad situation. Nick’s lack of health insurance at the time shouldn’t have impacted any of his decision making. I should’ve told my sister-in-law over and over again how important it was to pay attention to his health and get him treatment immediately if he was sick. Death from DKA is preventable, and I knew that more than most.

Stronger Now

My 30-year milestone of living with T1D is upon me. I am now married and have a child of my own. Since Nick’s death, I made some dramatic changes to my management of the disease. After years of resistance, I committed to an insulin pump because I knew it would drastically help my overall health. I even dedicated myself to clinical trials for different devices and went beyond my comfort zone for the sake of improving T1D options. I found my way to the best endocrinologist I’ve ever had, even though her office is two hours away. I talk much more openly about my disease and share my frustrations with my incredibly supportive husband as I still try to balance the reality that T1D is mine forever, with no breaks, days off, or cures in sight. And even though Nick’s death may make it seem obvious that T1D and DKA are explicitly fragile, I’ve made sure to have emergency supplies and plans in place with my family. Nick will forever impact me and influence my choices. It’s easy to take so much for granted, but I promise you it’s sobering with just the mere memory of holding Nick’s hand in the hospital begging him not to leave us. Even though we are now separated by heaven and earth, T1D has made me stronger, and I have Nick to thank for that.

Source: diabetesdaily.com

Teenager Builds T1D1 App After Diagnosis with Type 1 Diabetes

T1D1 (which stands for type 1 diabetes from day 1) is an app that was created by a newly diagnosed 13-year-old, Drew M, to help people better manage their condition. Determination coupled with being well-versed in coding led Drew to create this app almost immediately after diagnosis.

I thought it would be nice to hear Drew’s story and how he took his new diagnosis as an opportunity to help others.

Hi Drew, thank you for taking the time to speak with me. I know you were just diagnosed in September of this year. What signs were you showing and what made you see your doctor?

The only reason I went to my doctor was because we noticed I was losing weight while growing. I had lost more than 10 pounds and had grown over an inch over a three month period. I went to my pediatrician and they drew some blood. We left the office and before we even got home, my mom got a call from them and they said, “pack a bag and go to the ER at Children’s National right now!” My blood sugar level was 529 mg/dL and I apparently had large ketones in my urine test.

Drew recovery

Photo credit: Laura Mendelow

I know you were hospitalized, did you get a good education on how to manage this condition?

Yes – I think the diabetes team at Children’s National Hospital was awesome! They had a whole team of people that kept coming in to visit with me. Because of COVID, all group classes were now given one-on-one, so I got a great education.

Although I missed school when I was in the hospital, I still felt like I had math class because there was so much to learn about calculating my numbers and carbs. It felt like a lot to take in, but they did a great job explaining it to me. They taught me how to calculate my insulin doses and count carbs and I practiced on a sponge.

My grandma was diagnosed with type 1 about 10 years ago, when she was 61, so I was pretty familiar with seeing her managing it. That also helped me a lot knowing someone who has T1D so I wasn’t as scared when they told me that I had this disease.

I know you have a passion for coding and had just finished taking a summer course. At what point did it dawn on you that you were fully capable of creating something like this?

We were joking around about it with the nutritionist, Alex, that morning in the hospital. She was showing us some apps to help us out and said it was annoying that there wasn’t one app that did everything. My dad said jokingly, “Don’t worry, Drew will build you one.” When we got home I started looking at different ways to build apps and there are so many platforms now to choose from. I started playing around with it that same day and realized I had enough knowledge of coding that I could actually do it!

The stuff I was doing over the summer was just for fun because my soccer camp and my overnight camp got canceled because of COVID. Basically, I was bored and taught myself how to code using YouTube videos and a few classes that my dad shared with me. I learned how to code video games using Unity, but nothing like this app! I figured I knew enough about how to code that I could figure out how to build an app. It was like a cool challenge to take on.

My dad is a programmer but he had never built an app before either. But I figured if I got stuck, he could help me out. But, he really didn’t know anything about the program I was using, so a few times I got stuck and my dad was like, “I have no idea how to help you with that one, you’ll just have to google it.” So I did.

The platform I was using was limiting, like I couldn’t create a drop-down menu so I would have to learn how to go around the system to create some of the functions I wanted. I just kept teaching myself new things online until I found things that worked.

Drew with his father in the hospital. Photo credit: Laura Mendelow

I know the doctors at the Children’s hospital expressed a desire to create an app that was different than those that already existed. What was their wish list?

Well, they wanted a few things. First, it had to be simple and easy to use. And, it had to be something that a person could use from day one of diagnosis. There are so many apps out there but they may require you to have a CGM or a pump or they’re just too much for someone who is recently diagnosed and too complicated for kids to use. They wanted an easy way to calculate your insulin dose and also log your glucose levels.

People who are newly diagnosed are asked to call in every day after diagnosis for about 2 weeks and report their numbers from the last day (e.g. blood sugar, carb count, insulin taken for every meal, snack and at 2 am). So having a feature where you could email your logs straight to your doctor was a big request as well.

Then, they had more detailed ideas like the option to round to the nearest half or whole number. I didn’t even know some pens have half units and others only have whole units. The doctors knew what people needed, and I knew what I wanted as a person who was newly diagnosed, I just had to figure out how to program it on the app.

Your app has become quite a success! Now available on Android and iPhone, T1D1 has over 9,000 downloads already. What sets your app apart from the rest?

I think people like that the app is simple, yet does everything that they need right from the beginning of being diagnosed and has some cool features (like different settings for different meals) that other apps don’t have. Plus it’s completely free and has no annoying ads or any kind of in-app purchases.

Also, I think they like that it was created by a kid and not a big company, so they know I’m not out to make money or collect their data. I’m new to the T1D community but I can already see that people get annoyed when they see companies using their disease to make money off of them.

How long did it take to create this app and can you tell us a little bit about the beta testing process?

The first version took only about a week, but it was super simple. It was basically just a calculator with a few changeable settings. We then showed it to Dr. Marks and the diabetes team at Children’s and they came up with some suggested features. I would build in the features and then send it back to them for review.

Once we had a few features like a bolus calculator and an insulin log, we then reached out to online diabetes communities to see if anyone would volunteer to help us test the app. My dad reached out to groups on Facebook and Reddit and asked for volunteers. I remember that night, my dad was overwhelmed with how many people wrote back offering their help.

At that time, it was only being tested for Apple and we had about 70 beta testers. After a lot of testing, the app got published in the Apple Store on Halloween. So, that was about a month and a half after I started working on it. Then, a few weeks later we were able to get it published in the Android Google Play store.

I know you have received both national and international attention (Fox News, NPR and the Jerusalem Post to name a few!), how does that make you feel?

Honestly, I was so surprised at how it took off. It makes me feel really good knowing that the app will now reach so many more people. One of my main goals is to make the app accessible to as many people as possible and this publicity really helps me achieve that goal. Anyone who has T1D knows how tough it can be to manage this disease 24/7. Hearing stories about how I’ve really helped others, makes me feel so happy and helps me get through the tough moments. And, these stories keep me motivated to continue working on the app to make it the best I can.

Drew with family. Photo credit: Laura Mendelow

I know you are hoping to keep this app payment-free and ad-free. How can people help support you?

If people want to support the app, they can donate on the “support us” page on the IOS version of T1D1 or through the website T1D1.org. All donations are used to keep the app live and make enhancements. All profits get donated straight to JDRF. Another huge way to support us is to spread the word to their diabetes team and by posting about it on social media!

You are clearly an ambitious young man with a ton of determination! Do you see yourself doing more things with coding and diabetes? What do you think you would like to do when you are all grown up?

This opportunity to make an app really helped me to see the possibilities of being a programmer or developer when I grow up. It’s been really cool to talk with other organizations like Tidepool to learn how they integrate technology into improving people’s lives with diabetes. It’s awesome to think that I can use my coding skills to continue to help others with T1D. I now have a pump and am amazed by the pump technology. Who knows what others will create in the future. I’d love to take part in creating that new technology with them to help make all of our lives easier.

Thank you so much for taking the time to speak to me. You are a perfect example of someone who took an unfortunate situation and took the opportunity to help others.

I wish you much success and look forward to watching you thrive in both your future professional endeavors and managing your type 1 diabetes!

Source: diabetesdaily.com

One of the Lucky Ones: A Timely Diabetes Diagnosis

This content originally appeared on Beyond Type 1. Republished with permission.

By Mila Ferrer

How It Happened

Fourteen years ago, my youngest son was diagnosed with type 1 diabetes. He had all the classic symptoms. But neither my husband nor I knew that all the signs my son showed meant that our lives would change drastically very soon. I am pretty observant and I did notice that my son was urinating more frequently, but I thought it was just a urinary tract infection. Fortunately, my son’s pediatrician at that time was a friend of the family, and on top of that, her sister has lived with type 1 diabetes since she was little, so she had personal experience with it. I took the liberty of calling her doctor on her cell phone while she was on vacation, and thankfully, she answered the call right away.

When I told her about the symptoms my son had, she immediately said, “I hope I am wrong, but he has all the symptoms of type 1 diabetes. As soon as the pediatric emergency clinic opens, take him in and ask for a blood sugar test. Call me when you have the results.” I was skeptical and baffled, and I told my husband what the doctor had said; I went online to read about type 1 diabetes, but I still did not think that would be the diagnosis.

As soon as the emergency clinic opened, we took Jaime in, we discussed the symptoms with them, and told them about my conversation with the pediatrician. They checked his blood glucose level, and indeed the correct diagnosis was type 1 diabetes.

Kid

Image source: Beyond Type 1

The instructions were very straight forward: “You have one hour to go home and get the necessary clothing for a safe hospitalization.” We left the urgent care with a referral to the pediatric hospital, with our hearts pounding out of our chests and thousands of questions. Jaime was seen by the doctor quickly once we got to the hospital. The next day, we started diabetes education, and two days later, we went home.

Counting Our Blessings

Although my son’s diagnosis was surprising, I confess it was not traumatic, and although we had doubts and fears, we were able to resume our new life quite quickly. That experience led me to believe that all type 1 diabetes diagnoses in children were like ours. What I did not know is that that was very far from reality. I assumed that all primary physicians could identify the symptoms and begin the necessary treatment and education to stabilize the patient’s glucose.

The sad reality is that I was very wrong and once I joined the online diabetes community, I learned about the stories of misdiagnosis. I could not believe it! From that moment on, I could not help but thank my son’s pediatrician for sounding the alarm and telling us what steps we needed to follow. From that moment on, whenever I had the opportunity to educate others about the symptoms of type 1 diabetes, I did not hesitate to do so. As parents, we know the signs of many common illnesses and can quickly identify them, but I had never heard of type 1 diabetes symptoms.

That is why I am so passionate and why I value Beyond Type 1’s Warning Signs Awareness Campaign so much, as it seeks to help identify new type 1 diabetes diagnoses and prevent diabetic ketoacidosis (DKA) from occurring. I feel very fortunate that my son was not in DKA and that his diagnosis had no complications.

Even if type 1 diabetes has already reached your home, I want to invite you to help us by educating your friends and family. We must be observant, educated, and proactive parents, and if the symptoms of type 1 diabetes show up at any time, it is necessary to seek medical help right away. If your story is like mine, you should feel fortunate and be thankful to the healthcare professional, friend or whoever guided you. Join our efforts, share the #T1DWarningSigns and let’s prevent misdiagnosis or missed diagnoses from putting the lives of others at risk.

Learn more about our Warning Signs Awareness Campaign and help prevent missed diagnoses and incidences of DKA at diagnosis. Want to get involved now? Sign up to receive a free awareness kit here.

Source: diabetesdaily.com

“Freedom would be not to worry about my blood sugar level while eating birthday cake.”

Maria Model mySugr

Meet Maria, one of mySugr’s models living with diabetes. Maria was diagnosed with type 2 in an annual routine checkup. Living a healthy lifestyle and never being overweight, Maria was really surprised by her type 2 diagnosis.

mySugr loves to show the many different faces and stories of people with diabetes in the real world. So they do their own photoshoots and feature real people living with diabetes instead of using stock photos.

1. What were your biggest fears/concerns when you were diagnosed with diabetes?

I was wondering how much I will have to change my habits. I’ve always thought that my lifestyle was healthy, but now I have to give up even more. And of course, I am still afraid of how diabetes will affect my life at an old age.

2. What’s the hardest part/biggest struggle for you in living with diabetes day-to-day?

To say no to candies. I used to have a huge sweet tooth.

maria checking blood sugar

3. What piece of advice would you give to a person who is newly diagnosed with diabetes?

Each organism is unique. Each organism has different needs and wants. Besides the physical changes after a diagnose, we also have to think about our psyche. We should try to listen to our bodies and be conscious. We should observe how our blood sugar level reacts to different methods of treatment. Not only pills and injections, but also natural methods like fasting helps, meditation and sports.

4. Is there a phrase/statement about diabetes that drives you crazy?

Almost everybody thinks that only older and overweight people can get type 2 diabetes. Until I was diagnosed I thought the same.

5. When you think of the word “freedom” in terms of diabetes, what does that mean to you?  What would make you feel more free?

Freedom would be not to worry about my blood sugar level while eating birthday cake.

paper is for origami

Source: diabetesdaily.com

Injection Device Helping a Family Manage New Diabetes Diagnosis During COVID

Injection Port Device Help Family Whose Son Lives with Diabetes

Jennifer, like many others, has worried about her family’s health during the coronavirus pandemic.

In June, she was diagnosed with COVID-19. Shortly after, her 13-year old son Mason started feeling ill. Unsure if he too had contracted the virus, they visited their local emergency room. Soon after, the family was informed that Mason was living with type 1 diabetes. In this post, Jennifer discusses her family’s experience and the ways they are managing Mason’s diabetes during the global pandemic.

Mason came to me and said he didn’t feel right. Upset tummy, sinus issues, and a small headache. We took him to a local emergency room, and sure enough his rapid test was positive for COVID-19. The doctors also said that his sugar was pretty high. They asked if I could watch his levels at home over the next couple of days and if his sugars remained high, then I should call our family doctor. We left the ER on Tuesday evening. By Thursday, I called our doctor because his sugars never went below 200 mg/dL. We were put in touch with an endocrinologist, who advised us to take him to the hospital where he was diagnosed with diabetes. 

As a parent, all fears set in. I was worried that I didn’t know enough about diet and medication. I worried about if my son would ever feel normal again.

I was surprised that Mason was able to start giving his own insulin almost immediately, and he preferred it that way. In the three months since he was diagnosed, I have probably only given 10 shots! 

I was introduced to the i-Port Advance™ injection port through a Facebook page. I posted that we were having issues with him taking too much insulin before meals, and then he was too full to finish what he had dosed for. Several parents came back and suggested we try an injection port! I called my doctor’s office the next day and they were super excited to let him try it.

Almost immediately, Medtronic sent us a box of the i-Port Advance™ injection port to try at no-cost. I could not express my happiness! I was thankful the company was willing to let us try the port before we purchased. As a parent, this was such an amazing feeling and it was one of the first easy experiences we had since Mason was diagnosed! 

Mason fell in love with the injection port, and so did I! When he used the port, it was the first time since he was diagnosed that he didn’t feel like an outcast. Although he is incredibly diligent with what he eats and doesn’t take advantage of his insulin, he is a kid! He wants little treats, he wants to hang out with friends his age, and eat cupcake or have snow cones from time to time. All of which he had stopped because he hated sticking himself all the time and taking shots in front of people. Now, he can take a little extra insulin if he needs to. He can hang out with friends and not feel like an outsider because he can’t eat what they do! I’m also happy because he is building up less scar tissue with 1 stick every 3 days compared to 12-15 injections.

As a parent, I’ve been so happy to watch his outlook change. He knows that he can manage this disease and he isn’t constantly worried with taking another shot! 

Mason’s family enrolled in the 12-day evaluation program offered by Medtronic. To learn more, click below.

GET STARTED

The testimonial above relates an account of an individual’s experience using a Medtronic device. The account is genuine, typical and documented. However, this individual’s experience does not provide any indication, guide, warranty or guarantee as to the response or experience other people may have using the device. The experience other individuals have with the device could be different. Experiences can and do vary. Please talk to your doctor about your condition and the risks and benefits of Medtronic devices.

Safety Information: i-Port Advance injection port

i-Port Advance injection port is indicated for patients who administer or receive multiple daily subcutaneous injections of physician prescribed medications, including insulin. The device may remain in place for up to 72 hours to accommodate multiple injections without the discomfort of additional needle sticks. i-Port Advance injection port may be used on a wide range of patients, including adults and children. For more, please see http://www.medtronicdiabetes.com/important-safety-information.

Source: diabetesdaily.com

What You Need to Know If You’re Diagnosed with Type 1 Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Dr. Francine Kaufman

If you or your child was recently diagnosed with type 1 diabetes, you probably have many questions about how to manage this new condition. Dr. Fran Kaufman explains glucose levels and glucose targets, types of insulin and insulin doses, the honeymoon phase, and more

Were you recently told that you have, or your child has, type 1 diabetes? If so, you were likely filled with emotions, concerns, doubts, and questions. You were probably informed that there are many concepts you have to learn and many tasks you need to master. Hopefully, you were signed up for diabetes education sessions taught by certified diabetes care and education specialists (CDCES). You may have felt like you were on shaky ground; and despite all this, you knew that the sooner you learned how to manage diabetes, the better you would feel. Attitude matters, and the best attitude to have is a positive one – so hopefully you’re learning the tasks to successfully manage your diabetes.

Diabetes is a life-long condition. It is a marathon, not a sprint; no one day, one glucose level, or one meal makes a difference in the long run. One of the main goals of diabetes management is to balance insulin doses, food, and activity to keep your blood sugar or glucose levels in the desired or target range, as much of the time as possible. To do that, first you must know what the glucose targets are and how glucose levels are measured.  You must also understand what types of insulin are available and how they are combined for your insulin regimen. Finally, don’t forget to focus on your feelings, find support, and look to the future.

Click to jump down to a section:

  1. What are the glucose targets at diagnosis and how do they change over time?

Often when someone is first diagnosed, they are advised to keep their glucose levels between 100-200 mg/dL, to avoid hypoglycemia (low glucose) while they learn how to manage their diabetes. But after a few weeks or so, it may be time to bring glucose into the target range of 70-180 mg/dL, with pre-meal glucose between 70-130 mg/dL and post-meal glucose below 180 mg/dl. Before bed, healthcare professionals often recommend a glucose level above 100 mg/dL to help prevent hypoglycemia.

  1. How are glucose levels measured?

It is crucial that everyone diagnosed with type 1 diabetes learns how to perform fingerstick blood glucose measurements (referred to as BGs, fingersticks, self-monitoring of blood glucose, or SMBGs) and how to use a blood glucose meter (BGM).  When you are first diagnosed, blood glucose tests should preferably be done before each meal, 2-3 hours after each meal, before bed, in the middle of the night, before and after exercise, and before driving.  Here are a few tips for testing your blood glucose:

  • Before testing: Remember to follow the directions on your BGM. Be sure to set the date and time on your meter, have working and backup batteries, and keep all testing supplies away from extreme temperatures.
  • During testing: Make sure your hands are clean and dry. Put a new lancet in the lancing device and put the test strip in the meter. Poke the side (not the middle) of your finger with the lancing device so you maintain more feeling in your finger. Touch the blood droplet to the test strip allowing the BGM to read the glucose value.
  • After testing: Always throw away the lancet into a labeled “sharps container.” Write down the reading to keep a record of your blood sugar trends or review the stored data in the machine or on your computer; this will help you and your healthcare team recognize glucose patterns to more effectively manage your diabetes.

Continuous glucose monitoring devices (CGMs) are a more recent and convenient way to track glucose levels. A sensor that measures glucose (either through the same enzymatic reaction used by the BGM or through a fluorescent technique) is placed in the fatty tissue under the skin in the same place you give insulin shots, or where the insulin pump catheter is placed. Depending on which CGM is used, the sensor lasts either 7 days, 10 days, 14 days, or 90 days. These sensors measure glucose every five minutes and transmit the real-time glucose readings, a trend graph, and alerts to a smartphone or monitoring device. The data is stored in the monitoring device or in the data cloud so that you and your healthcare team can analyze it (if you give your healthcare professional permission to access it). CGM data can also be sent in real time to one or more care partners’ smartphones so they can help with your diabetes management. CGM is a powerful tool that many believe everyone with diabetes should be able to use, including those who are newly diagnosed; however, this technology is still not widely accessible or affordable.

The goal for using any of these devices is to assess the glucose value, and if it is not in your target range, to consider taking some action. If the glucose value is high, it might mean you should take a correction dose of insulin. If the glucose value is low, take oral glucose to bring it back up to the desired range (above 70 mg/dL). Ultimately, you’ll aim to have as many of the glucose measurements in the range of 70-180 mg/dL as possible.  With a CGM – which gets up to 288 glucose measurements a day – the goal is to have 70% of glucose levels in the target range of 70-180 mg/dL (referred to as Time in Range, or TIR). Seventy percent of glucose values is equal to about 16 or 17 hours per day spent in range.

  1. What are the types of insulins and insulin regimens?

It is essential that people with type 1 diabetes take insulin. The insulin can be taken by injection with a pen or syringe, through an insulin pump, or through inhalation. For people with type 1 diabetes, insulin is usually taken multiple times a day. There are many different types of insulin and many different ways to take insulin. Similar to how insulin would work in the body if diabetes wasn’t present, a common way to take insulin is called “basal-bolus insulin.” Basal (long-acting) insulin is considered a “background insulin,” as it is designed for 1-2 daily injections, and it helps the body balance glucose between meals and overnight. Bolus (rapid-acting) insulin acts over a much shorter time period, around 3-4 hours, and should be taken before meals and to correct high glucose levels.

Basal-bolus insulin means you take one or two injections of a basal insulin per day, and you take bolus insulin every time you eat carbohydrates or need a correction dose of insulin for a high glucose level. Some healthcare professionals have people newly diagnosed with diabetes start on a “fixed” insulin regimen – the basal insulin is taken the same way, but you eat a set amount of carbohydrate at each meal with a set dosage of insulin. The advantage of the basal-bolus regimen is flexibility in what you eat and when. The advantage of the fixed regimen is you are usually given a specific meal plan with information on how to substitute one carbohydrate choice for another – you don’t have to be an expert in carbohydrate (“carb”) counting right away, but hopefully you will master it over time. Talk to your healthcare team about which insulin regimen might be best for you and your lifestyle.

  1. How do I take insulin?

To inject insulin, you will use either a pen or a syringe. Make sure to store your insulin in the refrigerator before opening, and at room temperature after opening. Here are some best practices for administering insulin injections:

  • Wash your hands and inspect the pen or syringe. Check that you have the right type of insulin, that it is not expired, and that there are no cracks or unusual qualities to the vial or in the liquid.
  • Label the date that you open your insulin.
  • Rotate the location of injection between the arms, abdomen, legs, hips, and butt, and try not to use the exact same spot in each location. Varying the site of injection will help keep scar tissue and excess fatty tissue from developing.

Insulin pumps are small machines (the size of a deck of cards or smaller) that deliver only rapid-acting insulin; no long-acting insulin is given. The pump delivers insulin directly under your skin without the need for multiple injections each day. There are many types of insulin pumps with various features. Some can be paired with a CGM for automated insulin delivery (AID, also called closed loop or artificial pancreas). Many people are started on insulin pumps weeks or months after diagnosis, but others choose to wait much longer, or to never use an insulin pump at all. If you are interested in an insulin pump, talk with your support network and your healthcare team to determine what type of insulin pump system might be best for you.

  1. How are my basal and bolus doses determined?

In the beginning, you should have frequent contact with your healthcare team to adjust your insulin doses. At first you might need to change your doses almost on a daily basis, but later on, dose adjustment is usually not done unless a pattern lasts at least three days.

  • Basal insulin dose adjustments: Basal doses are in large part determined by your morning glucose levels before breakfast (fasting glucose). The goal of basal insulin is to allow you to wake up with a glucose level between of 80-130 mg/dL, without hypoglycemia (low glucose) or hyperglycemia (high glucose) during the night. Basal insulin also helps maintain glucose levels between meals and if you skip a meal.
  • Bolus insulin dose adjustments:
    • Insulin to Carbohydrate Ratio (ICR): Your ICR is the specific amount of insulin you take for every gram of carbohydrate you eat. In other words, how many grams of glucose are covered by one unit of insulin. You may be told to take your meal insulin at least 15 minutes before you start eating. The American Diabetes Association recommends that your glucose level be less than 180 mg/dL for 1-2 hours after your meal. You should then be back to your premeal value after four hours, without hypoglycemia.
    • Correction bolus insulin: This is taken when the glucose level is higher than the target glucose level of 180 mg/dL. Correction insulin is used to manage high glucose levels before and 3-4 hours after meals, or when hyperglycemia develops during the day or night. For most people, a correction dose of insulin should not be taken for three hours after the last insulin injection. You also need to be careful about correction insulin before exercise or bedtime unless otherwise instructed by your healthcare team.  A correction dose should bring your glucose level back to the target range within three hours, without dipping below 70 mg/dL.

Know that your insulin needs will likely change over time after you are first diagnosed with diabetes. Your basal amount, your insulin to carbohydrate ratio, and the amount you take for correction boluses will all change first with the “honeymoon” or remission phase of diabetes. After that they will change with growth, illness, weight change, aging, or a variety of other factors that can affect how sensitive your body is to insulin.

  1. What is the remission or honeymoon phase of diabetes?

Often after diagnosis and the initiation of insulin therapy, people with type 1 diabetes enter a honeymoon period. This occurs because some insulin-producing cells in the pancreas begin to function again – and make insulin. This means that you’ll be able to decrease the basal and bolus doses of insulin you are taking. Occasionally, someone can get down to a very low dose of insulin each day. It is best not to stop taking insulin altogether, even if it means you only take a very small amount of basal insulin. Unfortunately, the honeymoon period does not last forever, and glucose levels begin to rise again, at which time insulin doses may need to be increased.

There has been a national effort to identify newly diagnosed individuals with type 1 diabetes and tell them about studies designed for people with new onset, including the National Institutes of Health TrialNet study. diaTribe writes about clinical trials here. Please look into research being done and discuss this with your healthcare team if you are interested in being part of the effort to better understand type 1 diabetes and ways to try to preserve insulin-producing cells.

  1. How can I take charge and best support my health? 
  • Focus on how you are feeling – mentally and physically. Identify your challenges, find helpful resources, and get answers to your questions.
  • Put together your team of supporters – your healthcare team, your family and friends, and your co-workers.
  • Think of the overall mission – to successfully manage your diabetes and realize all your life dreams and goals. Master the day-to-day tasks, like how to check your glucose levels, take insulin, balance glucose levels, food, and activity, return to school or work, and stay healthy today and into the future. This is a marathon – give yourself time to adjust, learn, and thrive.

Reach out when you need help, and encourage your support team to do the same – there is a world of resources: doctors, nurses, nutritionists, mental health professionals, coaches, articles, books, videos, websites, associations, and organizations all waiting to help you. diaTribe is one of them.

About Fran

Dr. Fran Kaufman is the Chief Medical Officer of Senseonics, Inc. She is a Distinguished Professor Emerita of Pediatrics and Communications at the Keck School of Medicine and the Annenberg School of Communications at the University of Southern California.

Source: diabetesdaily.com

Former NFL Player with Type 1 Diabetes Shares His Story

Jake Byrne was diagnosed with type 1 diabetes as a teen, and he didn’t let his condition stop him from pursuing his dreams of playing professional football. He also wrote a book to inspire others with type 1 diabetes to pursue their dreams. We talked to Jake about his journey and the advice he would give to young people recently diagnosed. 

How old were you when you first became interested in football?

Since I was a little kid. My parents are from Wisconsin, and I grew up watching the Green Bay Packers every Sunday. I first started playing football in the 3rd grade.

When were you diagnosed with type 1 diabetes?

I was diagnosed when I was a sophomore in high school; I was 15 years old.

How did your diagnosis affect the trajectory of your football career at the time?

The largest hurdle to overcome was how to manage a new disease with the physical and mental demands the game of football put on someone’s body.

Did you become discouraged about your future?

Yes, the most noticeable change was the sudden weight loss. I lost around 30 lbs. and had to figure out how to adjust to a completely new lifestyle living with T1D.

What worried you the most, and how did you move forward?

How to manage my blood sugar was my biggest worry. Stabilizing my blood sugar to be able to stay in a healthy range for a 2-3 hr. game or practice was such a challenge. There was just not a lot of information or people I knew that could provide helpful insight on how to manage in such an extreme environment. For the most part, it was trial and error that was my method of finding what worked for me.

What was your most memorable football experience?

I have a couple. I never thought I would make it as far as I did in my football career. I always wanted to make it to the NFL, but I set more short-term goals that seemed realistic at the time. The first was after I finally got in a good rhythm with my diabetes and football and was able to play well enough to earn my first scholarship offer from the University of Arkansas. This eventually led to several other offers, which lead to my decision to attend the University of Wisconsin. The second was my Junior year when we beat Ohio State (who was #1 in the country), which lead us to become Big10 Champions earning us an invitation to play in the rose bowl in Pasadena, CA. The third was when I finally got a shot to play in my first NFL game on Sunday for the Huston Texans.

What was the most challenging aspect for you in regard to playing football with type 1 diabetes?

Keeping my blood sugar in a safe range. Lows were always a struggle.

Tell us a little bit about your book. What prompted you to write it? What was the inspiration and motivation behind it?

The inspiration behind the book started when I first received a letter from a young kid who was struggling to convince his parents to let him play football, triggering the feelings around how lost I was when I was first diagnosed. I was looking for some hope and guidance on how to move forward. From that point, I wanted to find a way to share my story to help others that were going through a difficult time overcoming adversity.

*Editor’s note: Jake’s book, “First and Goal: What Football Taught Me About Never Giving Up”, can be purchased on Amazon.

Can you tell us more about how having type 1 diabetes affected your football career experiences and vice versa?

Playing football at a high level is a challenge in itself. Then diabetes adds a level of complexity and discipline on top of that no-one else has to deal with.

Did the training and commitment involved in playing the sport at such a high level translate to more optimal diabetes management?

Absolutely, the amount of physical activity involved in sports like football leaves very little room for error. You can’t take one second off with T1D.

What advice would you give to newly-diagnosed kids and teens who have professional sports aspirations?

Never let diabetes set your limitations. Control your diabetes; don’t let it control you. It all comes down to your willingness to be disciplined in having a proactive approach to their daily routine to match your lifestyle.

Where are you today, and how do you think type 1 diabetes affected your path, overall?

Diabetes taught me very quickly that I had to be very disciplined in everything I do; it ingrained a work ethic and a sense of responsibility that is now part of who I am. That mindset allowed me to chase my dreams to play in the NFL, transition into my career into robotics, and eventually led to an opportunity to work for Locus Robotics as the Director of Customer Success. T1D taught me that through my life that if you work hard and have a thought-out plan, you can accomplish anything you set out to do.

Thank you for taking the time to speak to us, Jake. Your story is sure to be an inspiration to many young athletes with type 1 diabetes. We wish you all the very best in all your future endeavors!

***

Are you a competitive athlete with type 1 diabetes? What challenges have you faced and what advice would you give?

Source: diabetesdaily.com

Book Review: Actually, I Can.: Growing Up with Type 1 Diabetes, A Story of Unexpected Empowerment

Morgan J. Panzirer is 19 years old and is a student at Villanova University, majoring in biology and minoring in Spanish. She was diagnosed with type 1 diabetes at age six and is now working towards her goals of attending medical school and becoming a pediatric endocrinologist.

She recently published a book called “Actually, I Can.: Growing Up with Type 1 Diabetes, A Story of Unexpected Empowerment”. As with all our book reviews, I received a copy of the text at no charge, and I did not receive any additional compensation for my review.

There are many short chapters, as the author walks us through her life with diabetes, highlighting the highs and the lows of her experience in relatable and vivid ways. She shares her positive revelations, as well as frustrations. I think this text is a good read for young people with type 1 diabetes, and especially those who are newly diagnosed. Morgan’s story is really a wonderful example of making lemonade out of lemons, and will sure be inspirational to many.

The title of the book, “Actually, I can” refers to the common assumption that people with diabetes cannot eat sugar. The author explains,

“I can eat anything I want and it doesn’t have to be sugar-free as long as I give myself the proper amount of insulin. There is no special diet I have to follow. I can eat literally anything I want to. Sorry, that sounds super aggressive but I can’t tell you how many times people assume everything I eat has to be sugar-free. It is incredibly frustrating.”

Morgan writes with great candor and a sense of humor, and I can’t imagine her stories wouldn’t be relatable to almost any young person with type 1 diabetes. The author’s upbeat attitude about living with the chronic and challenging health condition comes across throughout the entirety of the text. While she is very honest about the gravity of the disease and the difficulties of living with something so relentless day in and day out, she is also incredibly optimistic.

“The, “Oh my life sucks because I have this disease” attitude is not the one to live by. It is so much more empowering to think about it this way: “Yes this disease sucks, it is such a pain in the ass, and has had such an impact on my everyday life, but look at the kind of person it’s made me.” Make it into a positive. Not everything in your life has to be negative all of the time. This was something I had to learn because I was, like most, only seeing the negative. Just remember: there’s always a positive. No matter how deep it’s buried, I promise you it’s there. There is a reason that you’re in the situation you are right now. Whether it’s to better yourself or educate others, there is reasoning behind it. You may not understand why your life is hell now, but you will later. You have to trust me on that.”

In short, Panzirer’s book is honest and relatable about growing up with type 1 diabetes. It strikes the right balance of acknowledging the gravity and hardships of the condition with a great optimism and empowerment.

What has been your experience with type 1 diabetes? Please share your thoughts below, we love hearing from our readers.

Source: diabetesdaily.com

Is Healthcare Provider Knowledge of Diabetes Lacking?

People’s experiences with healthcare providers can vary widely. When it comes to living with diabetes, many people expect that their healthcare providers, even if they’re not specialists, will be at least somewhat knowledgeable about their health condition. Many have found however, that while endocrinologists and diabetes education specialists tend to be more attuned to the ins and outs of diabetes management, even their knowledge can be outdated, while the knowledge of other providers, is sometimes starkly lacking.

Meanwhile, two informal polls in two separate diabetes social media groups, highlighted that over 85% of people with diabetes expect any healthcare provider (even if not a diabetes specialist) to have a basic working understanding of diabetes, at the very least the two major types and general treatment options.

Nevertheless, when the asked to share their own experiences, many reported a lot of confusion and uneducated statements about diabetes from various healthcare providers. The consensus during the crowdsourcing research tended to be “while we expect it, we do not routinely see it.”

We asked people to share some of the comments that they received about diabetes from healthcare providers. Here are some surprising responses and stories to ponder:

“When did you have your insulin pump surgery?”

“Type 1 diabetes develops over 2-3 days, not months.”

“He was a big baby so clearly he’s was a diabetic when he came out.”

“You will kill your child with this low carb nonsense… I will not stand by and watch you do that… I’m sure one of the other doctors will call CPS with this.”

“Diabetics like you are only allowed 4 eggs a week. Period.”

“You should eat more carbs, it’ll stabilize your blood sugars.”

“Do not correct under 13 mmol/L [~234 mg/dL].”

“You need to eat a minimum of 45 g carbs per meal.”

“If you don’t like seeing high fasting blood sugar numbers in the morning, don’t test your blood sugar then.”

“You will likely be dead from diabetes by age 30. If by some miracle you are still alive, you will be blind, on kidney dialysis, and in a wheelchair due to amputations.”

“Are you sure you have type 1?”

“It’s probably best if you stop sports and strenuous exercise.”

“If you go low-carb, you’re going to kill yourself.”

“An A1c below 6.5 is dangerous.”

“You don’t have to bolus for corn or peas, they are freebies.”

“Your insides are destroyed from having diabetes so long.”

One woman shared the following story:

“When my daughter was diagnosed at age 2 (I had diagnosed her and had to fight with her pediatrician to test her blood, because her urine test was normal. We already ate low-carb, so I had to feed her a high-carb meal and take her back and storm the pediatrician’s office and force them to give her a test, which came back at around 500, at which point they finally sent us to the ER). After diagnosis, the endo told us she needed at least 100 g carbs for each meal (at age 2!!!), plus 30–50 g snacks in between meals. Insanity! They had her on massive amounts of Lantus, NPH, and Novolog. They told me to feed her lots of ice cream before bed every night to hold her steady at around 200, which was a great night-time number for a kid that age! I swear I still have PTSD from that whole experience! Nightmare! I had to fight with them every step of the way!”

Such stories amassed very quickly, with many nodding their heads at having similar experiences. Is there perhaps a gap in basic diabetes education, in particular for non-specialists?

Image credit: Haidee Merritt. Republished with permission. Please visit her Etsy store for more original work and gifts. 

Almost all will likely agree – while we cannot expect every healthcare provider to be fully attuned to the latest developments in diabetes diagnostics and treatment, an accurate knowledge of the basics should be a requirement – especially with the high number of diabetes diagnoses, and undiagnosed or misdiagnosed patients.

Moreover, ensuring better understanding of diabetes and its management across the board, for all providers, is highly likely to improve patient outcomes in various situations, including recovery from illness and surgery, and more effective prevention of numerous diabetes-associated complications.

***

What are your thoughts on this issue? Have you ever had a surprising conversation about diabetes with a healthcare provider?

Source: diabetesdaily.com

How Coming Out Helped Me Accept My Type 1 Diabetes Diagnosis

This content originally appeared on Beyond Type 1. Republished with permission.

By Peter Friedfeld

I’d like to tell you a bit about my journey. First, you have to understand something about me: as a lifelong hypochondriac, I always only ‘thought’ I got diseases. So imagine my surprise being diagnosed as a diabetic not once, but twice. The first time was in 2014, right after my 55th birthday when I was diagnosed as type 2. Then two years later in 2016 ­­I was re-diagnosed as a type 1.

I’ll never forget sitting in the office of my new Endocrinologist when he leaned over his desk and said thos­e words that I feared. “You are a type 1 diabetic.”

As he pulled out two boxes he said:

“You inject yourself with this every morning, and you inject yourself with this at every meal.”

I asked “For how long?”, thinking he’d say for a week, a month… And he looked at me straight and said …“for the rest your life!” That’s when the gravity of being type 1 began to sink in.

What I eventually came to understand is that taking my daily shots would be the easiest part of managing this disease.

My New Normal

I was scared to be alone in the early days, and not sure if I would wake up in the morning. After two years of finger pricks, I finally started to use technology (reluctantly) to help manage my Blood Glucose numbers. I remember my first night wearing my Dexcom sensor —which would wake me up if I went low overnight. I explained to my husband Patrick that we were in this together, and explained how when a sensor goes off I may need his help, especially if I’m experiencing a low, scared that I would sleep thru my alarm. Sure enough, that first night, my sensor went off and I hear Patrick wake up and say “ALEXA OFF!” and go back to sleep.

But in all seriousness, my husband has been incredible, and he is just one of the many people whose support has helped me successfully manage living with type 1 diabetes.

I struggled those first few weeks after diagnosis. I would go out with friends, unable to tell them the truth about my diagnosis, and hiding the fact that I was taking insulin. I felt isolated, alone, scared. I felt I had no future, no ‘normal’ life ahead of me. But these feelings were somewhat familiar, reminding me of a time, 35 years earlier, when I was struggling to come out as a gay kid.

This feeling of isolation —that once I ‘disclose’ who I am I will forever be ‘branded’ by others. I didn’t want to be thought of as type 1, just as I didn’t want to be thought of as Gay. But coming out back in the 80s taught me some powerful lessons that I would use on my diabetic journey.

Learning From the Past Life Challenges

I left the sheltered and at times suffocating world I grew up in on Long Island and moved to NYC in 1987, to what was then the heartbeat of gay NYC, at the intersection of Christopher and Bleecker Street. Coming out gay was a real struggle for me, much of which had to do with my own insecurities and hiding who I was for years. The secrecy had taken its toll. I knew I needed to reach out to find other people ‘just like me’. Finding my community created the instant connection that crossed all barriers, and a sense of belonging and acceptance was more than comforting, it was empowering. I had no idea at the time that this process of ‘finding community’ would provide the building blocks that would get me through a life altering diagnosis to come decades later.

Diagnosis

Image source: Beyond Type 1

The 80s were a unique time in the struggle for LGBT rights (Q was not part of the acronym then). It was before the internet, before Instagram and Facebook, which meant finding others would be easier in the big city then it was back in the suburbs–all IRL-in real life. We found a collective strength in ‘community’ that we had to build from the ground up. It was a time when gay culture and awareness was just beginning to evolve in a more public way. I was also living in ground zero of the AIDS crisis in America—where our community literally had to fight for our lives. As our friends and loved ones died, we shifted our community from connection to action. And it was in those very dark days, I understood there was strength in numbers, that organizing began on the streets and there was power in the ballot box. We could change the world by being open with who we are, by educating our friends and family, to engage and not isolate. In the process, I learned how to be an Advocate – and that I could help raise awareness only by becoming visible first.

Ultimately, through my connection with others and in finding my own voice, I learned to be proud of myself and comfortable in my own skin. I learned as a gay young adult, the only limitation I had was myself. It took me a while, and so many were part of that journey.

25 years later, being faced with a new challenge of my type 1 diabetes (T1D) diagnosis—I drew on the strength of the lessons I learned, and eventually it became clear to me that I would need to come out once again. I knew I needed to find my T1D community, and embrace being a type 1 diabetic.

Finding myself again

Diabetes is often referred to as an invisible disease. I hear, “…but you don’t look sick”, just like I heard, “but you don’t look gay”.

I started searching online — I guess where everything starts today. I found an amazing resource in Beyond Type 1, an online community over a million strong. I read an article about Yoga and type 1, written by a type 1 health Coach Lauren Bongiorno. Lauren helped me understand that I can live a happy and healthy life, and helped me take control of managing my disease.

Lauren connected me to Erik Douds, a global adventurer who was biking and hiking around the world. I realized if Erik was able to bike 3000 miles across America, (with only two weeks of training I might add) – I should be able to manage to Bike around the Hamptons.

Both Erik and Lauren taught me how important it is to be able to take care of myself—and to have the confidence to be able to do that. And they both had my back. They opened my eyes to the power of this community. A community that has since connected me to so many — Susan, Rob, Jillian, Eoin, Austin, Jesee, Sarah, Qiana, Mia, Luke, Danielle, Matt, Bill, Alison, Thom, Dom, Peggy, Sara, Annalisa, Rachel, Raquel, Evan, Nate, David, Gerry, Arron and so many more. Proud T1Ds and allies.

Once again, it was thru this community that I learned as a type 1 diabetic, the only limitation I had… was myself.

When it comes to advocacy and education today, I lean on those early years coming out as a gay kid. Only by being visible can I affect the change I seek. I am passionate about talking to others about having type 1 diabetes, injecting in public, proudly wearing my Dexcom and identifying myself as a T1D (Yes I have the Rob Howe Diabetic Hoodie).  I love connecting, learning, and sharing—and being part of a community that is stronger than any individual voice.

Diagnosis

Image source: Beyond Type 1

I now recognize that we need allies in our fight as T1Ds, and that our numbers are too small to move the needle ourselves. We need our voices to be heard, and that requires our non-T1D friends, family and work associates to help amplify our voices as a community in need—of acceptance, of understanding, of healthcare for all, and for the cure we deserve.

My Story Is Only One Story

Today, 1.25 million people in America are living with type 1 diabetes, and every day an additional 100 people are diagnosed —at least 40,000 people per year —it’s a staggering number of lives that are changed forever. 

For so many, our lives are filled with frustration, burden and struggle. We need insulin every day just to stay alive. Insulin is a life-sustaining drug, but it is not a cure. We need a cure. And until that day comes, we need to help each other live the best life possible. It is our responsibility, to ourselves and to the community we created and are part of.

As for my husband Patrick—when we exchanged our vows, we said “for better or worse”. Well, my goal is to somehow make this experience part of the ‘better’. His support since day one has been unconditional. He lives each day as the life of a type 1 partner—watching over me, working with me, making sure I am safe and loved.

Finally, I recall asking my doctor a question that many of us asked when we’re faced with a chronic illness or life-changing disease “why me?” My doctor said, “Peter, it’s just your thing.”

At that moment, I thought I was alone and isolated in my battle with my new LADA diagnosis. But the reality was once I learned to open myself up to others and to embrace community— a lesson I learned so many years earlier, it was no longer ‘my thing’.  Today, 6 years into my new life, I  choose to make it a positive experience: to support those who struggle, to be supported, to learn, to help create and foster community, and to do all I can to help find a cure.

Source: diabetesdaily.com

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