Imagine Spotlights: Community Manager Tiana Cooks Talks T1D + Pageantry

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

By Beyond Type 1

Imagine Spotlights is a weekly video series produced as part of ADA’s virtual Imagine Camps for kids and teens. Hosted by Rob Howe, this series features conversations with inspirational individuals affected by diabetes and offers a fun learning experience for campers and their families. Watch the first interview with Tiana Cooks below!



*Partial transcript of the conversation below, edited for content + clarity.

You were a senior in high school when you were diagnosed – did you have the typical symptoms?

That’s a great question, and I always think back to that time since I remember it so clearly, and I think it was at least a month before I started feeling a little sick. I don’t know if any of you have bathroom passes, but at my school, they gave us this sheet. And on this sheet, we had about 15 passes to use the entire school year. And if we didn’t use our passes, we received extra lunchtime. I had saved all of my bathroom passes. I had all 15 passes left. And then I remember in one week, I went through the entire sheet of bathroom passes and I was so mad at myself. I remember telling my teacher, “I have to go to the bathroom,” but I was all out of my bathroom passes. So my teacher said, “Tiana, are you okay?” And I said, “That’s a great question.”

I wasn’t feeling great. I was obviously using the restroom a lot. I was very thirsty. I was losing a lot of weight. And then I went to my track coach and said, “Coach, I’ve lost 10 pounds in the first two weeks of the season, what is going on?” And he said, “Well, you probably just lost it because you’ve been running so much.” And then I remember this is when it really hit me. I thought, why is my vision blurry? I remember waking up one morning and I couldn’t see. And so I pulled out my phone and I typed in my symptoms. The first thing that popped up was type 1 diabetes, and I thought, this is it.

Do you ever try to strike up conversations with others you see wearing a pump or continuous glucose monitor (CGM)?

If I see someone else with diabetes, we’re automatically friends. There was one time I was waiting in this line to order food for 15 minutes, and all of a sudden I saw someone with a Dexcom on and I thought, Am I going to stay in line? Am I going to go talk to them? And I chose to go talk to them. I went over and introduced myself to them because I just feel like it’s so rare. They call it seeing a diabetic in the wild. And it’s so rare to see someone that has their equipment on as well.

Can you speak to stigma and stereotypes in the pageant world? How do you battle people’s assumptions about living with diabetes?

People do often stigmatize people with diabetes. They think that just because we’ve got diabetes, we can’t eat certain things or we can’t participate in certain events and that is totally not true. It is present in pageantry as well, people don’t think that we can do pageants because we have diabetes. People don’t think that we can participate in different athletic events because of diabetes. And I think one thing that I’ve learned after participating in various events, whether that be track or softball or basketball or pageantry, there’s always going to be people that have their own opinions. And sometimes those opinions will not be positive, and that’s okay because we just have to educate others about diabetes.

Before I started competing in pageantry, I also had stigmas about people who competed in pageants. Before I had diabetes, I didn’t know what it was. And so until we continue to educate ourselves and others, it will be hard to be fully aware of what people go through. So the more we advocate and the more we continue to tell people and educate them about diabetes, I think the more that stigma is going to go away. I just want to say this, even if people at school say mean things about you because you have diabetes, you just have to know that you’re special and that you have to have that confidence. You have to be confident regardless of what people are saying about you because you know that you’re enough and regardless of what anybody says, you’re capable of doing anything in this life just as good or even better than anybody else.

What advice do you have for people who want to get involved and give back to others living with diabetes?

I would say, if you want to get involved, do what makes sense for you. Just because Tiana is very vocal about her diabetes and just because Tiana loves to talk to other people about it doesn’t mean that you have to. If getting involved for you just means telling people that you meet the warning signs of diabetes, then do that. It might look like being vocal in your community and not online. There’s this huge misconception that in order to be making an impact, you have to be posting or talking about it, and that’s totally false. You can make an impact in your own way. Maybe you write cards to people at your local hospital. That’s how I started, I volunteered at my local hospital.

There are also support groups going on in the community. And we have an online community, our Beyond Type 1 app, and that community is just a great way to meet other people with type 1. There are just so many ways to get involved and it doesn’t look like competing in a beauty pageant all the time. It doesn’t. Or it doesn’t look like having a platform online. I actually helped set up support groups in my community, and those were super fun. Sometimes there would be five people, and other times there would be 50 people at the support groups. It’s just cool to build that community and that support network.

Source: diabetesdaily.com

My Type 2 Diabetes Is Forcing Me to Find a New Reason to Live

By Abby Hanna

April 21st, 2021 was when it finally happened. It was around 1:00 am and I was dozing off in bed. With the melatonin in my system and a good day behind me, I had no reason to be up any longer. My nights were usually long and painful due to my anxiety and lively thoughts, but that morning I had a good enough day to let me sleep peacefully. An exceptional day even. I had gotten my blood work from the day before back, and it looked like everything was stellar. My doctor emailed me that afternoon- “Hello Ms. Hanna, your labs look good overall.” I had carelessly overlooked the note she left about my low cholesterol (I’ll just eat more avocado toast or something) and went on with my day proud of how my body was taking care of itself without me ever having to intervene.

And then came that night. That was supposed to be a peaceful night. Me dozing off in bed. Melatonin in my system. And something told me to check my email. I decided why not, noone ever sends anything important at 1:00 am, it’ll be a quick scroll and then right to bed. I noticed another email from my doctor, more blood work results from the other day. I clicked on the message that revealed the results, and it was as if someone had replaced that sleepy pill in my system with Adderall. I’ve never sobered up so fast. I actually had a little bit of research to do from the information that she gave me. What I was looking at wasn’t an email explaining my labs, but the actual labs themselves. With a bit of research and decoding, I had confirmed what I thought was true. A cold chill ran through me as I stared at my labs. I rubbed my eyes to make sure I wasn’t dreaming. No, those labs are correct Abby. You have type 2 diabetes.

It was like finding out that your deepest fears were true. Like looking under the bed and seeing that the boogie man actually was there, or feeling the pain of pinching yourself when you thought that you were dreaming. Or looking behind you and realizing that someone is indeed following you, or getting a test back with a big fat F that you couldn’t afford to fail, or opening your bedroom blinds to reveal a dark figure is watching you, or hearing the sputtering of your car breaking down in the middle of nowhere, or reading your lab results in the middle of the night that say: You. Have. Diabetes. It was the end of my world. My body purged itself of any reason to sleep and immediately filled itself with anxiety and anguish. I did eventually end up going to sleep hours later, after learning every single thing on earth about diabetes.

I actually entered a state of bliss for the next few days. I had found out that my A1c (the number that tracks your blood sugar and how much excess sugar you have in your body) was relatively low when it came to the diabetic range. If your A1c is 6.5 or higher, you have diabetes, and mine was 6.6. I felt great about that, and although I aggressively changed my diet the next couple of days, I held dearly to my truth, which was that I wasn’t that much of a diabetic, only a little diabetic. A diet diabetic, if you will!

I knew that when I had a phone call with my doctor she would reassure me that everyone else’s diabetes was bad and that mine was just fine and that with a couple of smoothies, I’d be diabetes-free and back to normal like everyone else. So I waited a couple of days for my appointment. I set up MyFitnessPal. Ate a couple more vegetables, just for kicks, because I knew that when you have diabetes lite like me, you just have to add an order of apples to your McDonald’s meal instead of throwing it out all together.

Monday came around and we finally had the conversation. She told me everything I already knew about diabetes due to my extensive research days before. I told her that my worst habit is eating once a day. She sent a couple of informational videos about living with diabetes and told me that a nutritionist would be calling me soon. And then I posed the question. “So this is like a short-term thing, right? My A1c is pretty low for diabetes, so I just need to get it even lower and then I won’t have diabetes anymore, right?” And then she told me that this diagnosis was forever.

I started sobbing. And I sobbed through the rest of my conversation with her. I sobbed while telling my mom. I sobbed while on my walk. I sobbed in the grocery store while I picked up the “5 best foods to combat high blood sugar”. I sobbed while sitting in the car thinking about how I couldn’t flip this to be something that it’s not. I realized that this was the first thing that I couldn’t run from. I had successfully coped with everything in my life with the help of food. Food was my sidekick, my refuge, my safe space. And with this, I couldn’t run to food. I actually had to do the opposite. I had to run away from food because if I ran to it, it would be the very thing that kills me one day. It made me think about my relationship with myself and my body on a whole new level.

For as long as I can remember, food has been my safety blanket. It was my hobby. I had always loved cooking and wouldn’t mind taking the extra 20 minutes to turn top ramen into fine cuisine, or slow cooking something in the oven to make the taste richer. I loved the crinkly sounds of a takeout order, the squishy packets of soy sauce and ketchup, the red Thank You’s staring at me with gratitude as I opened the bag to reveal what treasure I ordered for that day. I loved the sizzling sound of a raw egg hitting a hot pan. The bubbling boil of a ripe stew slowly melding its flavors over a low fire. Everything about food was special to me, it was an experience, and I unabashedly leaned into it. Eating was my favorite thing to do and I would eat if I felt sad, if I was happy, to celebrate, to commemorate, to combat boredom. Everyone is supposed to eat, obviously, but I wouldn’t shy away from giving myself my favorite foods whenever I wanted them. These tendencies got a lot worse during the pandemic. I was already fighting my depression with cheeseburgers and my anxiety with brownies. The addition of a global catastrophe was scary, but it was no match for pad thai, mac and cheese, and crab rangoon. I felt justified giving myself whatever I wanted whenever I wanted. And why should I feel bad? I hate my life so I’m gonna enjoy my meals because it’s the only thing keeping me from killing myself!

Oops. Did I just say that?

The thought came tumbling to the forefront of my brain as I sat in the car thinking about this new life I would have to live with diabetes. I realized that the only thing keeping me alive was food. Literally. I hated everything else, my depression had taken everything from me but the sweet taste of lemonade or the spicy kick of kimchi. I realized that I hated my body and thus didn’t care what went into it. Growing up with body dysmorphia has made me distance myself from myself as much as physically possible. And mental illness has made me work towards quieting my brain and running from my problems in any way that I can. So, I don’t do my hair, I wear big chunky outfits to hide my body, I let the root of my fears hide in the crevices of my brain, and I revisit my good pal Caviar because it’s the only thing keeping me from ending it all. And now I am forced to take care of my body.

Learning about all the things that can contribute to high blood sugar was probably one of the wildest parts of the diagnosis. Anxiety, bad sleep habits, and stress are three things that I am too familiar with, and three things that also can raise blood sugar. Not eating enough and not getting enough exercise are also three things that can increase your blood sugar, or put it at alarmingly low rates.

Being diabetic means being confronted with my body’s health and well-being for the first time. It doesn’t just mean having more smoothies but it means sleeping at an appropriate time and making sure that I’m not stressing about all the worries of life. It means drinking enough water because my body deserves water, and it means going on a walk because my body deserves to feel the warmth of the sun and the coolness of the wind. This is hard for me. Because I want to sleep all day and I want to stress eat. I want my first time of the day leaving the house to be when I pick up my Ono Hawaiian from the delivery driver. I don’t want to have to think about loving myself and what that really means. But I have to. I have to make the decision to prioritize myself even though indulgence has felt like prioritizing me this whole time. It clearly wasn’t. Because this is where it got me. I don’t know what self-love is and I’m scared to find out, but I know that my security blanket has been ripped from me, and although it’s cold and painful, I hope there is something worth it on the other side.

 

Editor’s note: If you are struggling with mental health issues and diabetes, we urge you to seek professional help. The American Diabetes Association maintains a registry of mental health providers that have specially trained on caring for patients with diabetes.

Source: diabetesdaily.com

Tell the FDA What Delaying Type 1 Diabetes Would Have Meant to You

Imagine a treatment that could delay the progression of type 1 diabetes for years. How much would an extra year (or three or four) of good health have been worth for you or your loved one?

It could become a reality soon. This month, the United States FDA will evaluate what would be the first-ever approved treatment to delay Type 1 diabetes.

And you can help make it come true. In late May, the FDA’s advisory committee will review comments on the matter, including those from the general public. Just a single compelling letter from a person touched by diabetes could make a big difference.

We believe that it would be amazing to have an FDA-approved type 1 diabetes prevention treatment, and we hope that you’ll consider writing a letter of your own. We’ll provide instructions on how to do so at the bottom of this article. But first, a quick review of the proposed treatment and its potential:

Teplizumab

The novel drug is named Teplizumab. It’s been developed by ProventionBio, a biopharmaceutical company wholly dedicated to the prevention of autoimmune diseases.

When given to patients known to carry the antibodies that cause type 1 diabetes, Teplizumab delays the onset of symptoms by an average of nearly three years. And the effect may be even more potent than that. ProventionBio’s most important trial is still ongoing, and even after eight years some participants still appear to be benefiting from the treatment, which was given just once, in a single 2-week course.

Teplizumab was created decades ago, initially as an immunosuppressant, but researchers soon learned that it was especially effective at suppressing the specific T-cells known to attack the pancreatic Beta cells. Apparently, it can suppress that autoimmune attack for quite a long time.

How Teplizumab Might Change Diabetes Care

As of today, there is no validated way to slow type 1 diabetes,. Even if you have utilized antibody testing and know that a family member has an extremely high likelihood of developing type 1 diabetes, there’s little to do but keep watch for the symptoms of hyperglycemia.

But if Teplizumab gets approved, doctors would have a tool to help delay the onset of the disease for the first time.

And as Dr. Jeremy Pettus has explained, antibody screening would likely move into the mainstream. Even if Teplizumab were not indicated, antibody testing could also give many families valuable time to prepare for the progression of type 1 diabetes, months or years to learn about the condition and what to expect. That change could significantly reduce the frequency with which type 1 diabetes is diagnosed in the emergency room, only after the patient has experienced diabetic ketoacidosis (DKA).

How to Tell the FDA Your Story

It couldn’t be easier.

Here is the link to provide a comment for the FDA advisory committee that will rule on Tepluzimab’s application.

  • Write Your Comment
    • You can simply begin typing directly into the form, or you can attach a file.
  • Select a Comment Category
    • From the drop-down menu, select “Individual Consumer.”
  • Provide an Email Address. (Or Don’t).
    • A box allows you to provide an email address to receive confirmation that your comment has been received.
  • Provide Contact Information. (Or Don’t).
    • Decide whether you wish to provide your contact information, or you can file your comment anonymously. Your name will be made public, but none of your other information.

How to Write an Effective Comment

The FDA panel invites commentary from non-experts for a reason: they really want to hear the opinions of regular people. A good letter won’t just vanish into a slush pile.

This treatment is uncharted territory for the FDA, so the real-life experiences of people with diabetes and their caretakers might be especially relevant. While doctors and advocates will attest to the quantifiable medical benefit of delaying type 1, the experts on the advisory committee may not necessarily be able to imagine what those extra years could really mean for patients and their families.

Subjects that may be worth exploring in your comment:

  • The burdens and demands of living with type 1 diabetes, and the difficulty of a life totally reliant on insulin
  • The impact of what a two or three year delay in insulin dependence would mean to patients and families, including:
    • More time to live a normal life
    • More time for a patient and family to learn about the disease, prepare for it, safely manage it
    • Better long-term health, fewer complications
    • Lighter impact on families
  • How increased screening for type 1 diabetes antibodies will improve the standard of care and patient outcomes
  • How important those extra years of insulin-free life might be

Comments do not have to be long to be persuasive, but they should demonstrate a good understanding of the issues.

The government website also has a list of criteria to follow: click “Commenter’s Checklist” above the commenting form to pull up a pop-up window. It’s worth reading through.

For reference, you can look at comments that have already been posted here.

Deadline

Comments posted by the end of May 13 will be provided to committee members before the actual hearing, and will likely have the greatest opportunity to make an impact.

If you’ve missed the May 13 deadline, comments posted by the end of May 26 will still be taken into consideration.

 

Source: diabetesdaily.com

Two Brothers Take Control of Their Type 2

Peter and Johnny are brothers and good friends of mine, we were lucky enough to meet through our sons. They both have type 2 diabetes, just like their dad did. Just recently, they promised each other to begin taking their health seriously – and the changes they’ve made have been inspiring. I want to share their story.

Peter was diagnosed with type 2 eight years ago, right before I was diagnosed with type 1. Over the years, Peter and I have spoken a lot about our diabetes, and it has been so nice to share information and experiences with someone who “gets it.” I remember one time, we were all at a dinner party, and my continuous glucose meter was reading 49 with an arrow down. Peter understood the severity when most wouldn’t have, and quickly ran to the waiter to get me a coke. It has been nice to have someone to talk blood sugars with, but it became bittersweet when Peter’s brother Johnny was dealt the same fate of a type 2 diagnosis.

I thought it would be great to hear from Peter about his journey and how he started to take it seriously and commit to his health. I also spoke to Johnny about his surprising diagnosis, and how he quickly took action and control of his type 2. These brothers helped motivate and encourage each other, and now both can reap the rewards of their efforts.

Peter, Allison and Johnny celebrate taking control of their diabetes and their health.

Thank you so much for taking the to speak with me today. I thought many of our readers would love to hear how you both have taken care of your health thanks to your type 2 diagnosis. Making lifestyle changes isn’t always easy, but it is well worth the journey. And what a bonus to have your brother right by your side!

It is my understanding that your father had type 2 and eventually became insulin-dependent. Did you understand a lot about the disease growing up? 

Peter: Yes, we were six kids growing up, and my brother Johnny and sister Roula would give my dad his insulin shots 2x a day. They did not come mixed back then, so we had to mix the two vials (N&R) together to give his shot.

Did your father take care of his health? 

Johnny: No, he was first diagnosed at 37 but never took care of his health or made any lifestyle changes until later in life. Unfortunately, because of this, he had a toe amputated because of low circulation. It also affected his vision. He had multiple surgeries for this, and it ultimately lead to heart disease and heart failure. We lost him on his birthday at 71.

Knowing your family history, did you pay close attention to your diet and exercise habits? 

Peter: No, I thought I was invincible and that this disease would not affect me.

At what age were you diagnosed with type 2, and what were the symptoms? 

Peter: I was diagnosed at the age of 37. I really did not have any symptoms, but I had gone for a regular checkup and my blood levels were off the charts, and my doctor sent me to a specialist. The specialist put me on medication, but I was not taking the pills as prescribed, as I felt fine and didn’t want to take any medicine. I was not testing my blood sugar at that time.

How did you manage at first, and what lifestyle changes have you made since? 

Peter: I was in total denial and really did not change anything about how I was eating or going through my day-to-day life. Once I turned 45 and understood the severity and saw how much my blood sugar was rising, I made significant lifestyle changes. I started eating healthier, more vegetables (finally eating greens!), switched my alcohol choices (low-carb beer and lower sugar drinks). I started going to the gym prior to Covid, and then turned to walking.

I understand that recently you started to monitor your blood sugar more frequently and even tried out the Freestyle Libre. What was your experience with the Libre? Did you like being able to monitor your blood sugar all the time?  

Peter: I didn’t believe it! When I saw the numbers I thought they were wrong. I did like the ability to see how what I ate affected my blood sugar immediately, but I was not ready for the Libre until I took control of my lifestyle and lost weight, the full journey to get to where I am now. I feel like it would be better for me now, as it is extremely easy.

controlling type 2 diabetes

Peter before his weight loss

Please tell us about your brother, Johnny, and his surprising diagnosis. 

Peter: My brother happened to come over to my house when I was taking my blood sugar prior to my making healthier lifestyle changes and choices. My numbers were in the mid 200’s, and I thought my glucose meter was broken. My brother said, “Take mine so we can see how it’s working.” His numbers came over double mine at 468 [mg/dL]. We definitely thought the machine was broken until my sister-in-law took her blood sugar (with no history of diabetes in her family). She was at 90. At that point, we knew the numbers were correct, and we both knew that this was the defining moment of the rest of our lives.

What was your initial reaction to this pretty shocking news?  

Johnny: I was in total disbelief – I felt like I was going to die and really took a long, hard look at the life that I wanted and made a lot of decisions on how I needed to make some dramatic life changes.

Had you had any symptoms? 

Johnny: I felt completely fine, however, my wife always said that when I didn’t eat I would be very HANGRY. Snickers commercials had nothing on me, and truthfully when my numbers get too low now, I feel exactly the same. It is something I need to continue to control, to level out my sugar levels.

What were some of the first things you did to better get control of your health and your blood sugars?  

Johnny: I immediately stopped eating all processed carbs. No bread, rice, pasta, beer, sugar, desserts, and milk. I replaced these items with Ezekiel bread, zucchini linguini, almond milk, sugar-free coffee sweetener, and condiments (sugar-free ketchup and BBQ sauce).

Johnny before and after choosing to live a healthy lifestyle.

I know you have both come a long way since you found out you had type 2 diabetes. Can you each tell us a little about your successes? 

Johnny: I was 238 lbs before my diagnosis. By changing my eating habits, exercising every day, walking 2 miles, and working out, I now weigh 194 lbs. I’ve lost two pant sizes and feel like a new person, one that will be around for my family for a long time. And my wife says I’m super sexy now.

Peter: I was 232 lbs when I was first diagnosed, and with all of the changes in my everyday lifestyle, I now weigh 186. I feel like a million dollars and realize I should have made these changes years ago. Life is too short. Make the changes now.

You both should be very proud of yourselves for turning this diagnosis into a stepping stone towards a healthier life. What would be your advice to a newly diagnosed person?  

Peter: Control it now, before it gets out of control.

Johnny: Take it seriously as this life is precious and life is worth living without complications – it only gets worse as you get older. The best part, I feel like I’m 18 again!

Thank you again for taking the time to answer my questions. I am truly impressed with how you both taken on this disease. I know your story will inspire many of our readers!

Source: diabetesdaily.com

Diabetes Self-Care: How I Got Into and Out of a Bad Habit

By Julie Hyland

I was diagnosed with type 1 diabetes in July 2013 at the age of 37. I lost a lot of weight, mostly muscle. Looking back at pics, I looked so sickly but I had so much going on at that time I didn’t notice. I was moving to another state, my father passed away and my son was also moving to a different state, all within a two-month period.

After getting diagnosed, I had a very strong mindset that I wasn’t going to let this disease control me, and I was going to show the world I could do even more now with type 1 than I could do before. I have always worked out and watched what I ate, so I was ready to kick diabetes butt. Well, I gained my muscle and weight back and kept that mindset for about 5 years.

Left: Right after I got diagnosed when I lost all my muscle | Right: After I worked to get my muscle back

Then, I let it get to me. The feeling like I suck when my sugars were high. The fear when my sugars went low. The fear of going to bed and dropping low. The constant stressing and worrying about what to eat, what to drink and what to dose. The anger when I would attempt to work out and drop low. The feeling of being stupid because you can’t figure out this disease. So I stopped working out, and I started eating whatever I felt like. But most of all, I drank.

I have always loved alcohol. It was my best friend. It got me through sad times, happy times, stressed times, anxiety, fear. It was my life. It was there for me…so I thought. I began to drink so much, I now know it was a way of numbing my hatred for this disease. The same disease I said I wouldn’t let affect me. If I was drunk or drinking, I was able to ignore a million thoughts of this disease. This disease I got like winning a bad luck lottery.

Because I was always drinking, I stopped noticing how I looked. I mean, I noticed my clothes not fitting and how I looked in the mirror. But because I would just numb myself more, I was able to overlook it. All it took was one video I saw of me getting out of the pool. I couldn’t believe how I looked. I also started doing yoga at that time and I was in my house thank God, but in one of the positions, I had to lift my stomach up in order to do it…what the h*ll?! Never in my life had I experienced anything like this.

How I looked in May 2020

That day was May 18, 2020. I decided that day I was done drinking and punishing myself for something I had no control over. I quit drinking. I started walking. I got a treadmill and a weight rack, bench and weights. I started working out and eating better.

Because I wasn’t drunk and hungover all the time, I felt great and it began to change how I looked at everything. The scale doesn’t show a huge amount of weight loss, but I’ve lost so far 7 inches off of my stomach. I have gone from a size 12 jeans to a size 6. I have started running and I love it. I dabbled in running about 15 years ago but never could run for long distances and always felt like death. When I started in July 2020 I couldn’t run for even 15 seconds. I can now run 3 miles and not feel like death. I will be running my first 5k at the end of May, which is also my one-year of sobriety month. I am nowhere near where I want to be but I’m so happy and proud of what I’ve accomplished so far. After my 5k, I want to do a 10k and then a half-marathon and so on.

April 2021

If I have any advice about this disease it’s “don’t be so hard on yourself”.

I also wish there would be more information out there about adults getting type 1 and more people talking about it. When I first got diagnosed there was barely any information about adults getting diagnosed. I started a YouTube channel in hopes to help other adults and it’s also a good way for me to get all my worries, stresses and journey out to everyone. I stopped making videos when I was in my funk, but I’ve started back up now. Documenting my sobriety and my running journey and how it all affects my blood sugar. If you are interested and want to follow me along in my progress. You can subscribe on YouTube at imtype.01.

Source: diabetesdaily.com

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

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