Mark Andrews: A Tight End with Type 1 Diabetes

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

By Katie Doyle

The Baltimore Ravens didn’t choose just any offensive lineup during the 2018 NFL draft – a key part of their strategy is Mark Andrews, a tight end from the University of Oklahoma who has been managing his type 1 diabetes since before he started playing football and into his rookie season.

Beyond Type 1 spoke with Mark about his pre-game rituals, how technology like the Dexcom G6 helps him stay on top of type 1 on long Sunday afternoons, and why it’s important to use his high-profile career to educate and advocate with National Diabetes Awareness month coming up.

How have you managed your diabetes through major life changes, like going away to college, playing a division 1 sport, or going through the NFL draft?

I was diagnosed at 9 years old, and it was the first time I ever saw my dad cry. At that moment, I knew it was serious because it wasn’t something my dad did very often. And since then, my family has been my rock. I was lucky enough to have a dad who was also a doctor and had an understanding of diabetes when I first was diagnosed.

Personally, I wasn’t very nervous. I knew that one day I wanted to move out, play football at a Division 1 level and ultimately play in the NFL. It’s something I was always very diligent about. I wasn’t going to let my nerves or anything else get in the way of that. My mom probably worried most, but my dad was instrumental in instructing my whole family in what to expect and what to know. I rely on them a ton. Using a CGM allows them to be a part of it and know my numbers at all times. It gives them peace of mind to be able to check in on me.

Mark

Image source: Beyond Type 1

How does your family support you from across the country?

My mom will always be my mom, so she still checks on me regularly. Last week, she texted me and said, ‘Hey, I don’t think you have enough complex carbs on board, you’ve been going low and trending low a lot. Just want you to eat something that gives you more complex carbs. I love you, hope you’re having a good week; I’ll talk to you soon!”

It’s awesome to get a text message like that and know my family has my back. After that, I ate a peanut butter and jelly sandwich just to have that background complex carb and went about my day. It’s always good having people look out for you — the more eyes you have on someone with diabetes, the better.

I’ve got a teammate right now named Orlando Brown whose dad had diabetes so he’s incredibly well-informed. He was my college teammate and now he’s my NFL teammate with the Ravens. He’s always wondering what my numbers are, and I actually share my numbers with him from my Dexcom.

When did you feel comfortable enough to talk to your friends and teammates about diabetes?

At first, I remember feeling a little bit reserved and not being totally open about it. I’d go hide in a corner to test. I also remember the first time my friends saw me testing my blood sugar. I was 10 or 11 years old, and they saw blood and thought it was cool. I was kind of in the spotlight because they were so interested in what I was doing.

That opened me up to be more vocal and to share what I’m doing and how I deal with things. After that, I became really comfortable sharing what I deal with having T1D and how I deal with it and sharing with others. I was very open talking to my coaches, and I had my parents to help me out with that, and they still do that to this day. Ever since then, I’ve always wanted to talk about it and shed light on what people with diabetes have to do.

Tell us about your pre-game ritual.

I do something a little bit different: I wear a pump, so I use that for basal (25%) and I use Lantus for my other type of basal (75%) on a normal day. But on a game day, I’ll go 100% Lantus — that allows me to be off the pump for long periods of time but not have to worry.

Knowing your body is key. Knowing what I put in my body and how it will affect me is something that I feel has been instrumental for my health. I’m a big fan of complex carbs; I eat peanut butter and jellies, especially on game days or the day before a game, just allowing myself to have that complex carb to hold me over while I’m exerting a lot of energy.

Having my Dexcom, and the way it allows me to see my blood glucose trends and see what foods react a certain way has been huge for me. There’s a lot that goes into diabetes management, and I think it’s incredible that I can rely on Dexcom and not have to prick my fingers all the time. It really sets me up for success on the field.

Who are your role models?

I didn’t know anyone else with diabetes growing up, but I have my dad, who is extremely knowledgeable and always researching different things. He’s the reason I went to 100% Lantus for game days.

I can remember, at a young age, having diabetes and seeing Jay Cutler in the League, and being able to tell myself that it’s possible. I adopted a mindset that this disease is a part of who I am, but it’s not going to define me and it’s never going to stop me in achieving my dreams. Football is my passion, it’s what I love, but now it’s my job, and diabetes is something I refuse to let affect my job.

You seem like you have a ritual down for games, but how about during the NFL draft? How were you feeling then?

There’s so much work that had been put into that moment, from my mom driving me to soccer practice, to all those hard hours put in on the field, it all lead to that moment of actually playing in the NFL. It was kind of scary to know that that you’re putting your future into someone else’s hands — into 32 organizations’ hands — but this has been my dream for a very, very long time.

Why is it important for young athletes with type 1 to have role models?

To be put on this stage, I’ve always wanted to give back and for me, that’s with diabetes — that hits home for me. Helping kids with diabetes is something that I’ve found has given me the most reward: raising awareness and talking to people about how I use technology and what I do with it, it’s to help people with everyday life and share some of that.

I’m going to work as hard as I can to be the best tight end that I can be, and hopefully one of the premiers tight ends in the League. I want kids to see where I’m at today, like I saw Jay Cutler, and I hope it inspires them to go out there and play sports and be active — to follow their dreams, no matter what they may be. A professional football player? Great! Go out and achieve it. Or if anything else, you know, This guy’s playing football at the highest level, then I can do anything else!

Source: diabetesdaily.com

Diabetes and Reality TV, with Marcus Lacour from Say I Do

By Alexi Melvin

Netflix’s “Say I Do” is a reality show about surprise dream weddings, but its first episode showcased something we don’t often see in reality TV – type 1 diabetes (T1D). In the episode, Marcus LaCour was given the chance to surprise his wife Tiffany with a magnificent wedding do-over.

Alongside planning and logistics, Marcus also spoke candidly about his life with type 1 diabetes, spurred by a conversation around how wedding catering decisions needed to take into account the food choices he makes to help manage his blood sugar levels. We caught up with Marcus to chat about his experience on the show, how he handled presenting his type 1 diabetes to the world, and where he and his family are now.

Did you ever imagine that you’d be on a TV show on Netflix?

I definitely didn’t expect it. It’s one of those things where you’re like, you know what? If it happens great, if it doesn’t, it’s great too. I don’t think it dawned on me really until we started shooting. Once we started filming, I was like, “Oh, this is it. This is legit.”

When you were talking about your T1D on the show, it came across so well. Is that something you discussed beforehand with the producers? Did you preface anything or was it organic?

It was organic. We literally were just sitting and talking about it. The subject of food came up and early on I told them, “Hey, I’m a type 1 diabetic.” We were just having a conversation of, “Hey, how’s this, how’s that? How did that happen? How were you diagnosed?” Literally, just conversation flowed from there. In my honest opinion, it was one of the most genuine conversations I’ve had with anyone about my condition, just because it was in a room and in the area where there was an open space where I could tell them everything I needed to tell them about the condition.

You touched on how much your wife did for you when you had a situation where you lost your healthcare – the rationing of food and things like that. Did that also include rationing of insulin? Were you having issues with getting supplies?

I was. I was getting samples from my doctor’s office at one point. You know when you’re trying to ration insulin or trying to pick the insulin you can afford, it’s not as effective as what you’re used to. I was getting the regular 70/30 mix insulin pens. I kept bottoming out throughout random times of the day. I was used to taking NovoLog but [at one point, my doctor] didn’t have any NovoLog samples. So I was literally just getting whatever he had.

When [my doctor] did get the NovoLog pens, I was using those thinking, okay, he should have some more samples. Well, there was a time where he didn’t, and that time for about a month maybe, we’ll say three weeks, I was rationing my insulin, because I’m trying to make sure that if I do go high, I have enough to cover the high. If I go low, just [having food] to eat, but more importantly, what you need on a daily basis [to keep your levels stable].

One day, the doc called and said they didn’t have any samples. I was down in my last 10 units. So for about an extra two and a half, almost three weeks, I was rationing 10 units of insulin.

When did that situation start getting better for you?

I ended up getting a loan from my boss because at the time I started a new position and he was like, “I don’t want to see you suffer.” At the time, NovoLog Flex Pens were $250 for the pack. So he gave me a check for $250 and said, “Hey, go get your meds.” So that was how I got through that. Then somehow, by some sort of miracle, after that pack ended, my doctor, all of a sudden, got samples again.

What is your management routine like now?

It’s the Omnipod right now. I’ve got better insurance that covers the pods altogether. It’s still an adjustment for me though, because I’m used to not having a PDM. Before, [when] I was on the injections, it was, wake up, take your long term, and then just carry the Humalog pen on me at all times. Then with the pump, [if] we’re going to work out, I forget to suspend my insulin flow. Or if the site doesn’t take, having to double check and make sure blood sugars aren’t really high. So it’s a couple of different things, but it’s not bad. It’s still an adjustment though.

Do you feel you prefer the MDI or do you feel the pump ultimately is going to be better?

I’m already seeing changes in my numbers, just from average standpoint. On the shots, the lowest my A1C was, or I could get it, with 6.9, 6.8, but now I’m seeing, that even though there are days where I may be high because the pod didn’t take, or I may run low, those days are few and far between, so I’m running normal on a lot more of a regular basis.

Do you use a Continuous Glucose Monitor (CGM)?

I don’t. It looks we have to go four months without a CGM and track those numbers before insurance will approve it.

In terms of your diet, on the show, you talked about how you’re conscious of what foods are going to spike your blood sugar. Is there a specific diet you to stick to? Are there certain foods you prefer or are you getting more flexible with it because of the pump?

I am still a very conscious eater. I prefer to eat clean. Everything has to have a balance. Now I know with the pump, you have that freedom to literally eat whatever you want. But for me, when I was diagnosed, I didn’t have that option. So, it was literally sticking to that diet, sticking to that regimen. Everything has to have a fresh fruit or fresh vegetable, [there] has to be a starch. There has to be a grain and there has to be a protein. That’s the only way that I know.

I came across a comment online that said, “Well, diabetics can eat whatever they want.” It’s very true. But for me, I don’t want to run that risk. I think I’ve always done something whenever I got a new insulin, when I got my Humalog, I wanted to make sure it worked. So I got a peanut butter Twix, took it to cover it, just to see what it would do. When I got my pump, I had a chocolate chip cookie just to make sure it was working. It would work, but overall, my diet is consistent. I prefer to eat clean. It’s just because I know these things aren’t going to have a whole lot of impact on my blood sugar.

I saw on Instagram that your daughter’s been learning more about your T1D management. How’s that going?

It’s going well honestly. Before, when I was taking my shot, it was just, “Hey, Daddy’s got to take his insulin,” or, “Daddy’s got to check his blood sugar.” So she’d always been curious about it. Then one day I had to change my pod. “Are you changing your pod, Daddy?” “Yeah, Daddy’s changing his pod. you want to watch?” “Yeah, I want to watch.” So she came in and got hands on. I always want to make her aware just in case something happens. If my blood sugar goes low and I’m unresponsive, or if I’m too low and I can’t get up to get anything, I want to make sure she’s aware to say, “Oh, Daddy’s not feeling well. Daddy he needs something to eat.” Or, “Something’s going on. Let me tell Mommy.” I always want to make sure she’s aware of what my condition is, not to scare her, but to the point where she can be reactive.

Who did you have as a support system when you were first diagnosed?

My mom was my biggest supporter. I didn’t keep it from my friends, but I felt they wouldn’t be able to understand. They were used to me just being able to get up and do whatever. If we wanted to play football, it was get up and do it without having to worry about anything. They knew I had type 1 diabetes, but they didn’t know the entire scope of what it meant to take care of that condition. So it was my mom. Then over time, my friends started to get a little bit more of an understanding of it. So my friends would ask, “Hey, what’s your blood sugar like? Are you OK?” Or if I was going to the gym to work out with some of my buddies, “Hey, don’t forget your meter.” Or I’d always bring my meter with me and I’d have to check in the middle of work out, see either I’m high or low, or just to figure out where I was at. They would always ask, so they held me accountable in that regard.

Have you been getting a lot of people in the type 1 community reaching out on Instagram or social media?

I’ve gotten that. It’s always refreshing because [they’re] like, “Thank you for representing and letting the world know about your condition.” Well, it’s a part of me. I’d be foolish to hide it, like, “I don’t have a condition.”

Had you been involved in the type 1 community at all before appearing on Say I Do?

Not necessarily. I’ve always wanted to though. I’ve been at this for almost 20 years, it’ll be 20 years in November. When I first got diagnosed, there weren’t a lot of support groups. There weren’t very many places for me to go where I could vent or even if I had high blood sugars or even lows, how to combat that and deal with those. But now times have changed. I would love to be able to get out and talk to people about what our condition is and how to manage it effectively.

What’s next for you and your family?

Honestly, I am not sure. I work for a Children’s Hospital down here, so I recruit for them and it’s just more or less just going with everything at this point, just laying back and enjoying the ride while we have it.

Do you think you’re going to seek out more TV opportunities?

To be honest, I don’t know. This is all new. It’s all new to both of us. If more opportunities come, then yeah. Absolutely. But it really just depends on what comes down the pipes. I think the ultimate goal would be just for us to just enjoy this and see where it takes us.

Source: diabetesdaily.com

Seeing the Signs and Learning to Thrive with Type 1 Diabetes

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

By Eoin Costelloe

It seems like most type 1 diabetics out there have a similar start to their story: an overwhelming sense of fatigue, intense and sudden weight loss, an unquenchable thirst, and extraordinarily frequent trips to the bathroom… The start of their new life.

My new life followed an almost identical path.

My name is Eoin Costelloe. I’m from Dublin, Ireland and I was diagnosed with type 1 diabetes (T1D) at the age of 19. Like a lot of 19-year-olds, I knew almost nothing about diabetes – let alone never even had a passing thought about being diagnosed myself. Most of the “education” I had received about diabetes consisted of scenes from movies or TV shows. We’ve all seen the stereotypical depiction of a diabetic: the overweight, unhealthy, unfit character. The message seemed to be that a diabetes diagnosis was the result of too much sugar and a serious lack of exercise. So I believed it was something that I would never have to worry about.

How naive.

My Diagnosis

At the height of the holiday season back in 2012, I was making the most of my time off school. I was eating out, going to bars with friends (it’s legal at 18 in Ireland), and spending time with family. It was great! The only care I had was the countdown of days until my return to school.

Eoin

Image source: Beyond Type 1

It seemed to happen almost overnight. I started experiencing excessive thirst. I initially thought it was due to dehydration as a result of a couple of beers the previous night. But my thirst could not be satisfied. I would stand by the sink, drinking glass after glass after glass of water. It felt as if I wasn’t drinking anything at all. My body was tired. Not the “I’m just gonna lie down and watch a movie” type of tired. This was different. This was tiredness I never knew existed. This was like my entire body was shutting down like there was a boulder on my back.

Throughout my life, I had always been very active. I played almost every sport you could think of: football, rugby, swimming, basketball, boxing, kickboxing and so on. I have a naturally slim build but had built myself up a bit through working out in the gym. I prioritized my health and wanted to stay in shape consistently.

Over this holiday break, I bumped into a friend who I hadn’t seen in a while. We had barely said our “hellos” before she, almost alarmingly, blurted out the fact that I looked really different. I didn’t quite understand what she meant so I asked her to explain. She replied, “I don’t know, you just look different.” Looking back it was clear that she had noticed my sudden weight-loss, but maybe didn’t quite want to say it out straight to me. Maybe she thought I would be offended.

I lost 25 lbs in about 2 weeks.

Because I would see myself every day, I didn’t notice the weight loss as much as you would expect. Still I continued drinking water, running to the bathroom, and falling asleep almost anywhere I sat. The carefree 19-year-old me didn’t hear the alarm bells. I thought I was “fiiiiiiiiiine” and just tired from staying out late. My parents, on the other hand, had been silently concerned. They suggested that I go to the family doctor to get blood work done. They told me without sounding too urgent, so as not to make me overly worried. Again, while not being too concerned, I went and got my blood tests. In my mind, this was just something to help reassure my parents that I was fine. Sure… what can go wrong when you’re 19?

A couple of days later, I was woken up by a phone call from the doctor.

“Is this Eoin?”

“Yes.”

He said: “You’re diabetic and you need to get to the hospital as soon as possible.”

I almost didn’t even hear him. It was like I was dreaming. How could I, a 19-year-old, who was constantly active, playing sport and eating well, have diabetes?

I put down the phone, went into my parents’ bedroom, and shared the news. They didn’t quite know how to react; they were even more shocked than I was. I explained how the doctor had emphasized the importance of urgently getting to the hospital. We went and, within minutes of arriving in the unit, I was on a drip and briefed on what was to come… the start of my new life.

The team explained to me that my blood sugar reading at the time was 684 – they might as well have been speaking a different language. I had no idea what those numbers meant). To help put it into context, they informed me that I was less than 48 hours away from a coma.

Like most newly-diagnosed people out there, my next few days were filled with uncertain and confused thoughts. What does this mean? What did I do to bring this on? Could I have prevented it? Is my life ever going to be the same? I’m thankful for the dark sense of humour that my two older brothers and I share because they both arrived at the hospital with bags of candy and bottles of cola – that certainly made things more light-hearted!

Still, my life had changed and would never be the same again.

Living Beyond

I’ve had type 1 diabetes for eight years now. In a strange way, it’s one of the best things that’s ever happened to me. Now that’s a bold statement, so you’re going to have to let me explain. Having diabetes has given me such incredible focus. Without it, I wouldn’t be doing the things I’m doing and I wouldn’t have met many of the friends that I have made. I wouldn’t be in the business that I’m in and wouldn’t be speaking to people from around the world every day. I wouldn’t be as thick-skinned, be as disciplined, or know what direction I’m going in. I wouldn’t even be writing this piece right now! I’ve learned a lot about myself from this condition. I’ve become stronger and definitely more motivated. If I were given the opportunity to go back and never be diagnosed, I wouldn’t take it. What initially seemed to be an enormous negative has been transformed into a powerful positive.

Eoin

Image source: Beyond Type 1

Because of diabetes, I’ve built my own platform where I can share my insights and speak to thousands of people with diabetes every day. I am in contact with those who have had it for years and those who have been recently diagnosed. The contact is honest, real and at times, deeply moving. Through posting my thoughts, advice, experience, and just plain everyday occurrences as a T1D, I’ve established a solid reputation within the diabetic community.

This potentially negative situation has now become one of the most positive elements of my life. From the moment I stepped out of the hospital after my diagnosis, I knew things were always going to be different, but I wasn’t going to let them be different in a negative way.

I remember scrolling through social media and seeing people post about everything and anything. People blogging about shoes, cars, fitness, make up. You name it, it was there. I knew I needed to share my experiences, my thoughts, concerns, and fears around the condition. Not just to other diabetics but to anyone willing to listen. Diabetes is one of the most commonly occurring diseases, yet the average person knows so little about it. I wanted to somehow attempt to change the stereotypical, ill-informed views and opinions about diabetes and that’s really how I became involved in the community.

You have no control over your type 1 diagnosis. You either have it or don’t. It’s just one of those things. But I believe one of the best skills you can ever learn is the ability to turn a negative into a positive. I was always told, “You cannot control everything that happens to you in life, but you can control how you react and respond to anything that life throws at you.”

Listen to Eoin talk more about his diagnosis + the start of his journey with T1D:

Source: diabetesdaily.com

Interview with Type 1 Musician Austin James

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

By Makaila Heifner

Austin James is a FreeStyle Libre Ambassador and this content was made possible with support from Abbott Diabetes Care.

Austin James is a multi-instrumentalist from Hartford, Connecticut whose music blends folk, rock, and soul to create a new genre-bending sound. He recently sat down with Beyond Type 1 to answer some rapid-fire questions about his life with diabetes and musical journey.

Tell us about your diagnosis.

AJ: I was 17, a senior in high school, getting ready to start my second semester of my senior year. And I got really sick, lost a lot of weight, all the signs for diabetes. A buddy of mine in my class had diabetes, so I ended up checking my blood sugar and it was well over 600 (mg/dL) so they rushed me to the hospital and it was an overnight change.

How did you know it was diabetes? Did someone suggest that it was diabetes?

I actually had looked up the symptoms. I had known about diabetes because I was close with my friend, so I was his accountability partner which is pretty funny, because I didn’t have diabetes at the time, so I was responsible for that. I knew something wasn’t right, I told my mom, “I think I’ve got diabetes.” She was like, “No, you’re fine. You’re fine.” She just kind of saw me withering away, slowly lost about 30 pounds. I was so sick, so thirsty. And I was preparing to go into the military and everything just changed. It was pretty wild.

What would you say was the hardest part about the diagnosis?

Just the change in the trajectory of my life. I came from a military family and not be able to do that was really hard for me at the time, ended up being a blessing in disguise that I got to chart my own path and become a musician. But yeah, that was probably the toughest part.

How has diabetes impacted your music?

Well, I mean, before I was on the FreeStyle Libre system, I was doing all finger pricks and it was just really painful. I’m a multi-instrumentalist so I’ve been playing violin for 20 plus years and I play guitar and your fingers are already pretty beat up from playing the instruments and then you have finger pricks on top of that and it can get pretty painful. So that’s been the biggest challenge. And then just peace of mind when you’re going on tour and making sure you have all these supplies and making sure you’re not running short on anything. And technology now helps so much, having the pump and continuous glucose monitor (CGM) are an added layer of security there.

When you’re preparing for a tour, how do you make sure you have everything and that you’re ready to go?

I have a checklist. I’m a pretty organized person so I have my checklist ready and everything good to go. And my mom, because my mom always checks in on me. She lives in Florida, and she’s still a mom even though I’m 31, she still checks in on me. So she makes sure I have everything and she goes through the checklist with me.

What’s your favorite and least favorite part about touring?

My least favorite part of a tour is the hotel, I can never sleep in them. I like my own bed, so that can be pretty tough, but my favorite part is the traveling. I like being in new spots. I like various things, different cities, different cultures.

Who is your biggest influence for your diabetes journey?

Funny enough, obviously with the music is watching Nick Jonas. I mean, how appropriate? But watching him live a very fulfilled life, it’s pretty cool. I mean, obviously he’s a musician as well, but it makes it that much more relatable. And I think Jay Cutler, the former quarterback in the NFL, definitely those two guys for sure.

Biggest influence on your music?

I’m a big Aerosmith fan. Steven Tyler, he’s my guy.

What advice would you give to someone recently diagnosed with diabetes?

That it is tough, it’s going to be a hard road. You’ve got to be honest with them, but at the end of the day, you can really live a fulfilled life. And the technology we have now has come so far and not to get too down. You can really live a full life and it is possible. And if you really do take care of yourself, you can live a healthy life as well.

Watch Austin speak about his CGM below, and check out his music HERE

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

Feeling Helpless? Here’s What You Can Do

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

By Beyond Type 1 Editorial Team

Feeling helpless in the midst of COVID-19? You’re not alone. There’s a lot we still don’t know about the virus and the situation is changing by the hour. One important thing to think about is separating what you can do from the things you cannot control. We’ve compiled a list of specific actions you can take to have a real positive impact for yourself, your family, and your community.

People with diabetes may be at higher risk should they contract COVID-19, so please take all of the personal precautions you need to at this time. Not everyone’s risk is the same, so be mindful of yourself and others. Take what works for you from this list and leave the rest.

Take Basic Precautions

Wash your hands often for a minimum of 20 seconds with soap and water. Practice social distancing, limiting travel, working from home, and rethink big events – these precautions are not solely for you but for those around you who may be susceptible.

Stay up-to-date with your local health department about COVID-19 in your area.

Connect With Family

Stay in touch with friends and family virtually. Up the frequency that you communicate, and be clear about how you’d like to stay in touch. FaceTime or video chatting can be an awesome tool to feel close to those who are far away – without adding any risk for you or your loved one. Other ideas for staying in touch: start a family or friend group text, find games you can play together remotely, or set a regularly scheduled phone call.

Talk to the children in your life about what’s going on. Tell them we’re washing our hands and keeping to ourselves to protect ourselves and others to help them understand that this is about all of us, not just one of us. Ask if they have any questions and explain as best you can. For older kids and adolescents, asking “what are your friends saying about the coronavirus?” might be a good jumping-off point for starting a conversation to help clear up any misinformation.

Make a list of projects for children to help you with around the house, and teach them how to cook with your extra time at home – you’d be amazed at what they want to help with and how good they will feel knowing they are contributing.

Reach out to People Who Are Most Vulnerable

Think about the people you know, and be mindful of how the current situation might be impacting their specific circumstances. Elderly neighbors, grandparents, older relatives, friends with health conditions, anyone going through chemotherapy or the many, many, other circumstances that might contribute to the current level of anxiety. Reach out and ask how they are. Offer to listen or lend a hand — helping with simple tasks like grocery shopping and limiting the time they spend in public could make a huge difference. If you’re limiting your time in public, too, even just lending an ear at this time can help keep anxiety and loneliness at bay.

Don’t tolerate or perpetuate racism, particularly towards those of Asian or Chinese descent. Referring to COVID-19 as the “Wuhan” or “Chinese” virus may perpetuate racism and xenophobia. If you hear or read others referring to COVID-19 using those terms, please correct them. The importance and impact of being kind to one another cannot be overlooked.

Support Your Local Community

Follow local public health departments and support local news. Journalists everywhere are working hard to keep the public informed about this rapidly-evolving situation. Now is a great time to purchase a subscription to your local news source if it is in your budget. Please also think about the sources of information you read, and try to verify their trustworthiness before you repeat it – the CDC and WHO are good for receiving global updates you can trust.

Donate to your local food bank (find one here). Donating money might be more helpful than donating goods, as food banks often get their items at wholesale cost (in many cases, a $1 donation is equivalent to 5 meals). If you’re well, experiencing no symptoms, and have low risk, ask what volunteer opportunities are available to assist with food distribution.

Support local businesses. If you are fortunate to have uninterrupted income during this time (i.e. can do their jobs from home) and have it to spare, consider transitioning purchases from chains to local businesses, buying groceries from local stores rather than large online retailers.

Consider purchasing gift cards now for use later at a gift store, book store, or local restaurant. Call and ask what they need, or if they’ll accept the transaction over the phone. Ask if they deliver or ship.

If you’re out and about, tip your waiters and waitresses, Uber and taxi drivers, stylists, barbers, and other service industry workers as generously as you can afford. 

Offer support in other creative ways, like buying yourself or others a gift card online to use later, and shopping local businesses online if they have the capability. Reach out and ask what support these businesses need that you might be able to offer (i.e. even just sharing online about what they do).

Support the Diabetes Community

Help drive research + innovation. Sign up for the T1D Exchange Registry, a research study that pulls from your personal experiences and data to help accelerate the development of new treatments. Previous T1D Exchange research efforts have led to things like insurance coverage for test strips and changes in guidelines for A1C goals – your input has the power to make a difference.

Donate your data + impact others. Join the Tidepool Big Data Donation Project, helping further the reach of our collective knowledge about diabetes. Your data gets anonymized and Tidepool will also give back 10% of proceeds to the nonprofit organization(s) of your choice.

Share your voice. Talk to your network about the importance of social distancing and other steps you’re taking to minimize contact and stop the spread of this virus.

Connect with the Beyond Type 1 Community. Download the the Beyond Type 1 App and chat with others living with diabetes. We need connection with others now more than ever.

If You’re Facing Challenges Around Work + Income

If your work hours were cut, file an unemployment claim.

Contact your creditors, electric, phone, and cable companies to see if any accommodations or payment arrangements can be made to make up for lost hours or pay shortages at work.

Worried about homelessness or evictions? Reach out to organizations dedicated to fighting homelessness and their plans to deal with the pandemic. Also, stay informed on if your city’s policies on halting evictions due to COVID-19.

What You Can Do to Support Mental Health

Look into telehealth options for mental and physical care. Check your insurance to see if there is a telehealth service offered, contact your doctor to find out if they have an option for remote visits, or check out services like DoctorOnDemandBetterHelp, or TalkSpace.

Find a new daily routine. Keep getting up early, making coffee, eating breakfast, getting ready for the day and choosing a space to work. Going about your day to day as regularly as you can will only do you and your family good.

Volunteer with animals. Dogs and cats appear to not be susceptible to the virus*, so if you are able to walk dogs at your local shelter or visit the cats, consider it. Animals can help reduce stress, and you might even end up with a new friend to take home.

*the virus may be able to survive on the animal if it has been touched by an infected individual, so know the risks here 

Volunteer your time remotely to help others experiencing distress. You can take the training to become a Crisis Counselor with Crisis Text Line from home, and work to support those in crisis.

Source: diabetesdaily.com

Life With Type 1 Diabetes: A Gamer’s Take

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

By DJ Lipscomb

I never thought I would be the type of person who watched someone play video games on the internet. But here I am, a 32-year-old dad who loves video games and not only watches other people stream, but recently started a streaming page + podcast dedicated to video games. Oh yeah, and did I mention I also have type 1 diabetes?

The Name of the Game

I was diagnosed with type 1 at the age of ten and it completely changed my life. It required me to grow up a lot faster than I would have liked and has shaped so many decisions I have made over the last 22 years. I remember being so terrified to do basic things on my own as a kid, even thinking that I might die. As a parent to three minions of my own now, I would never wish that feeling on any of them. That type of mentality is not easily shaken, but I eventually was able to push through the fear and not allow this illness to keep me from being everything I wanted to be.

Lipscomb

Image source: Beyond Type 1

The funny thing about growing up fast is that you leave a lot of “kid” stuff behind. I played video games a lot as a young kid. My brother and I would spend hours playing Gameboy or Super Nintendo. Looking back, I can see now how my diagnosis shifted my mentality on what I thought was age-appropriate. I just didn’t feel like a kid anymore. I had new responsibilities that had life-threatening consequences if ignored. Sure, I still played games, but I lost that pure innocence and fun that comes along with jumping into a brand new world for the first time because I was obsessed with keeping my blood sugar in check.

After going through some major life changes in 2016, I suddenly found myself faced with an opportunity to take stock of who I was and who I wanted to be. My diabetes had suffered immensely as a result of the stress from a divorce, I was out of shape, and I was a little lost. I remember one of the first things that I did for myself during that transition was buy a Nintendo Switch. I will never forget the moment I hooked the Switch up and played The Legend of Zelda: Breath of the Wild for the first time. That joy I had forgotten suddenly rushed back through my veins. I knew at that moment, gaming would forever be a part of my story.

Fast forward to today. I am the healthiest I have ever been thanks to a major shift in my diet and to a recently introduced workout regimen. I own a successful consulting and media company called Exhale Creative that helps brands determine what type of content they need to create in order to help them grow and better reach their audience. We also produce 99% of the content for those clients. I have been a hired guitar player, touring all over the world and playing in front of tens of thousands of people (that’s a whole other glucose management article on its own). And now, I am chasing down a new dream called Patch Notes.

How to Stream

Patch Notes was created to celebrate the intersection of life and video games. We want to show how video gaming can bring out the best in people while simultaneously breaking down stereotypes about who or what a gamer is. We stream on Facebook Gaming, and you can find our podcast on iTunes and Spotify.

When Facebook announced that on Giving Tuesday they would match dollar for dollar the money raised through charity streams, I was thrilled to raise some funds for Beyond Type 1. I have had the privilege of interacting with several members of the Beyond Type 1 team and truly love the light they shine on all things diabetes. And even though I did not raise an abundant amount of money during our stream, my growing community did step up and donate while we hung out and played Pokemon Shield.

My platform is growing and I can’t think of a better way to use it than to help people, who like me, face this illness every day. It is also worth noting that there are several type 1 diabetes people (T1Ds) who watch the stream, which has made it feel even more meaningful to me. I am excited to host more streams that bring awareness to a disease that is often misunderstood or misrepresented, and look forward to bringing in more donations to help others with diabetes pursue their passions.

You can go back and watch the stream (and still donate) here. And come hang with us anytime at Patch Notes.

Source: diabetesdaily.com

Este Haim on Burnout + Bolusing for Pizza

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

By Todd Boudreaux

Este Haim is the bassist of the pop group Haim, which she formed with her sisters Alana and Danielle in 2007. Este has also been living with type 1 diabetes for nearly 20 years. Last week, Haim announced the release of their new track “Hallelujah,” stating the song is for “anyone struggling with chronic illness.” Beyond Type 1 caught up with Este to ask about the genesis of the track, her life on the road with T1D, and how she faces diabetes burnout with the help of her support system.

A Rough Transition

Freshman year of high school is perhaps the biggest transition in any teenager’s life. For Este Haim, that transition was made all the more difficult by her diagnosis with type 1 diabetes at age 14. Este recalls how difficult it was to fit in given all that she was going through.

“Yeah, it wasn’t a great way to start my first week of high school… I was basically a social pariah for a very long time. You know, I was just the diabetic kid in school that passes out and no one knows why and the diabetic girl that smelled like orange juice all the time.”

Although some of her classmates made life difficult in high school, there are two people Este has always been able to depend on — her sisters Alana and Danielle.

“Not only are they my sisters, I’m also in business with them, so we spend so much time together. We’re on the road together 24 hours a day for weeks on end. So they’ve seen every version of me. They’ve seen me in a good place with diabetes, and in a sh*tty place with diabetes,” Este says.

“I’m lucky that I have Danielle and Alana to be my support and when I am having a bad day, a bad week, a bad month, they’re always the first people to be like, ‘Dude we got you. Whatever you need. We’re going to get through this. Let’s get you a healthy meal. Let’s not have pizza after the show tonight. Let’s go get you something good so that you don’t wake up and your blood sugar is 350.”

Real Talk

“Pizza is such a blessing but it’s also such a curse” — Este’s description of pizza is all too real for anyone who has lived with diabetes.

“After a show, I get so hungry and the only thing that’s available to me is pizza. And we all know that pizza does weird sh*t to blood sugar. It’s this unexplained thing — bread I can bolus for, tomato sauce I can bolus for, cheese I can bolus for, but for some reason when they’re all together it’s this magical thing that I can never get right. It’s insane, what is that? It’s like my favorite food. And of course, it’s the one thing that I really can never get right. It’s hard being on the road and craving food and realizing the only things that are open late are either diners that don’t really have a lot of like salad-y options, or pizza.”

Este’s sisters fully grasp the exhaustion that comes with living with diabetes and have become an amazing support system for her. Their holistic view serves to remind Este that she is more than her diagnosis.

“My sisters have this incredible attitude of, ‘If you’re going to have a bad day, have a bad day, and just live your goddamn life. Tomorrow’s a new day, you get back on the wagon, get back on taking better care of yourself, let’s make some healthier choices. Let’s take a walk around the venue for a little bit, let’s get some exercise.’ And that also takes energy on their part. So I’m thankful that I have them on the road and it’s definitely an integral part of diabetes, is having that support. I’m really lucky.”

Life on the Road

Haim

Image source: Beyond Type 1

Keeping track of blood sugars on a consistent schedule is extremely difficult, and the ups and downs of life on the road can wreak havoc on the ability to maintain glycemic control, of which Este is all too aware.

“It’s being in a different time zone and not being able to sleep and then the stress of that and the cortisol in my blood making my blood sugar rise for no reason. Often, I won’t even know that I’m stressed out, and then I’ll see on my Dexcom that the arrow just goes straight up.”

Having a continuous glucose monitor (CGM) has been a game-changer for Este, not just because it allows her sisters to follow her glucose levels remotely, but also because of what it means to others living with T1D.

“I think awareness is so important and that’s why I wear my Dexcom on my arm now because I have a way of showing people that I am a type 1 diabetic… before I didn’t really have that.”

Diabetes Burnout

Este doesn’t mince words when it comes to the importance of mental health awareness for people living with type 1 diabetes. She is candid about the very real struggles that anyone living with a chronic illness endures over the course of their life.

“I think something that I struggled with, something a lot of people with diabetes struggle with, is perfection. We were taught to look at high blood sugars as a failure. I think that leads to diabetes burnout because you’re constantly trying to be perfect. Mentally, there’s only so much of that you can take without feeling like a failure… And I think that’s been the majority of the reason that I burn out. I’m just like ‘F*ck it, fine, whatever.’”

Haim recently released a new song titled ‘Hallelujah’ and Este posted that her verse in the song was inspired by her struggles living with T1D, specifically calling out the phenomenon of diabetes burnout in her post.

“It’s a lot easier sometimes to just ignore it and not deal with it, but we all know it always catches up with you… I feel like I’ve gone through diabetes burnout — for long periods of time — at least 10 different times in the past 20 years of being a diabetic, and like it’s tough, man. It’s tough to maintain that as a type 1 with chronic illness because there isn’t necessarily a promise that there’s a light at the end of the tunnel, and I said it in my post, it’s like a 24-hour job you can’t clock out of, that you don’t get paid for. Maintaining that mental toughness I think is exhausting for a lot of people.”

Haim

Image source: Beyond Type 1

Looking to the Future

At the end of the day, it all comes back to the support we receive from the people around us. As our discussion wrapped, Este told Beyond Type 1 how important it is to remind those that support us just how appreciated they are.

“The thing that I want to impart to people is to tell our loved ones that support us — that we do appreciate them — and to thank them for being supportive because I don’t know what I would do without my sisters, my parents, my best friends and my boyfriend for that matter… I think it’s really important to find the people that truly love and support you. I know it sounds trite and cliché, but all we can do is look to the future and try and live our best lives and have fun doing it. Enjoy every day as much as you possibly can, and don’t let diabetes get in the way of you doing and achieving everything that you want to do. Truly, that’s all we really can do.”

Source: diabetesdaily.com

From Dance to “American Ninja Warrior”: Talking to Christina Martin

This content originally appeared on Beyond Type 1. Republished with permission.Christina Martin has had type 1 diabetes since she was 13 years old. In high school, she started her own foundation – Type Zero – to help others know they were not alone. This year, Christina attended the JDRF Children’s Congress and participated in Season […]
Source: diabetesdaily.com

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