Jennifer

 
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Age: 36    Year Diagnosed: 2017   Location: Los Angeles, Ca

"Right after I was diagnosed, I didn't know what I was doing in regards to insulin for meals. I wasn't truthful with my carb intake and would miscalculate the amount of insulin I should inject to cover. One night, a few months after my diagnosis, I made a cauliflower pizza and bolused like I was eating half a Pizza Hut. About 20 minutes later, I started feeling like I was having a panic attack, but worse. I had never had a low before. I started yelling "I'm dying" and my partner at the time started shoving any sweets he could find my way. The problem was I just had low carb wraps and peanut butter and wasn't aware they process slower. So basically I sat in a limbo of false death until I ate enough, drank water and found some old gummy worms. It scared the hell out of me while also making me realize how much consistent control you must have, or else...

A big misconception is the idea that all people who have diabetes bring it on themselves. They must have had a poor diet and were addicted to sugar. Education should be key in this space. Many people can prevent type 2, but there is this misnomer that if you get late onset type 1, it's your fault. Hate to break it to everyone, but I am extremely healthy, a lover of fitness and my pancreas is just not a fan of me. He just decided this 35 years later. I will be honest and say I had similar misconceptions prior to diagnosis. Again, we need to raise awareness to break the ignorance. Also, I hate when waiters in LA think I am being a finicky actress who is using vanity as a reason for modifying my  food. PLEASE JUST MODIFY! 

As a performer, I thought this was going to make me look weak. I was very secretive about my T1 until I had a few personal awakenings that made me realize a lot about myself, like how strong I truly was. Diabetes is not all of me. It is a part of me, like someone else's battle is a part of them. We all have our hurdles. I realize now I have a platform I am creating to use for good. I can use my art and voice to make people feel less isolated with this diagnosis and to educate others who are unaware. When I get sad or bummed, I think about the enhanced lifestyle and discipline I have to have as a win. I also think maybe this is part of my purpose.

Do what is best for you. It is a lot of trial and error and there is no set guidebook to this nasty pal. For me, consistent exercise helps with insulin sensitivity and releases stress. I also believe low carb, high protein, mostly vegan works well. It is going to be ok, and be thankful it was caught when it was."

Penny

 
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Age: 5   Year Diagnosed: 2015   Location: Los Angeles, Ca

"You’re going to be ok. It seems scary at first, but then it’s not so scary any more and then it’s not scary at all."

From her mother, Kate:

"People have asked me if Penny’s Dexcom is a GPS device. I’ve asked Penny if she feels high in in the grocery store and have gotten all kinds of weird looks.

I wish people knew how much mental energy T1 requires, that it really isn’t a set it and forget it kind of thing. You are thinking about it constantly, like a program that runs in the background on a computer, always there pulling energy.

It doesn’t get easier, but you get better at it. Early on I found that we got so focused on Type 1 we were prioritizing her physical health over her social and emotional wellbeing. Sure her A1C looked great, but the stress we were causing her wasn’t fair. We taken a step back, recognizes what a huge mental health component there should be in Type1 care, and found a happy medium. We say yes a lot more."

Schneur “Solly” Jacobs

 
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Age: 19    Year Diagnosed: 1999    Location: Los Angeles, Ca

"I was on a long hike last summer. Because of the heat I sweat the adhesive off of my Omnipod, and had to apply a new one in middle of the woods. Since it’s part of The Long Trail, we would see people pretty often. A group of hikers came upon us, just as I was flicking the air bubbles out of the needle. I think they thought I was a drug user, their jaws dropped and they started backing off. I had to call out and tell them that I was a diabetic and that nothing fishy was going on.

I hate when people thing that we can’t make normal lifestyle choices! It could be as simple as someone telling me I shouldn’t be eating a cookie or people babying me on hikes. I’ve been a counselor for two years in a survival camp, I can definitely fend for myself. When people are suddenly experts in how I should handle myself and how I should maintain my health it really irks me. I’ve been living with type one as long as I can remember, don’t patronize me about how I should be operating. I find also that there is a big difference between when people care and when people “care” in this regard, people who care help me be less scatterbrained about it, for instance someone reminding me to dose fifteen minutes before food. Then there are people who “care”, who really just want to be right, “don’t eat that it’s sugary”. I’d say the misconception I'd like to fix is that diabetics can’t take care of themselves.

I went to boarding school at the age of fourteen. When I left home it really hit me how responsible I was for my health. I no longer had the crutch of parents who could monitor my every move. About that time I started getting into fitness and overall health much more. I’ve had diabetes as long as I can remember, but it hit me then that the person that you can rely most on is you. It’s always nice to educate someone else about what’s going on, but the person whose knowledge and being we should be most concerned about is ourselves. Be proactive, go out, and be the best that you can be, no one else can.

Being mindful of the big picture. It helps so much to sit down, look at your numbers, and see how they can be improved. A lot of the time you don’t need an endocrinologist to tell you to up your basil in the mornings. If you sit down and look at the trends over time in your logs, you’re already steps ahead in your journey to fix whatever is going wrong. One of the worst things I was doing was only concentrating on the now, looking at the whole helped me a huge amount.

Timmy

 
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Age: 50    Year Diagnosed: 2000    Location: Sun Valley, Ca

"In 2005, I was working for a band and touring around the world. It was the last night of the tour and I was sick in Fresno. I spent the day on the tour bus without getting off. I didn’t eat a thing all day. I would get out of bed only long enough to chug a bottle of water while standing at the toilet and immediately throwing up. At the end of a very long and terribly uncomfortable day, the EMT came into the bus and told me I should go to the hospital. I’m a very stubborn and stupid diabetic. I told them no! There was no way I was going to a hospital in Fresno! When I arrived back at my house, 7 hours later I walked in and told my then wife to take me to the hospital. I spent the next two days on an IV and lots of insulin. That was my first experience with DKA. It’s not fun. I don’t recommend it to anyone. I have learned to pay more attention and check my sugars way more than my doctor says I need to. I would rather not ever go through that again.

Tt seems that the crowd I hang out in always says the same thing... “ if you pass ou,t can I give you a shot?” It seems that people only think you need insulin and can’t have sugar. That’s why at work I tell people if you see me acting strange or passed out give me sugar!

When I was first diagnosed, a friend said to me “ So you have to take shots every day? That sucks.” My response was and always will be “No, the alternative sucks”. Being a diabetic can be a pain in the ass, or thigh, or stomach, or fingertip but it doesn’t mean the end of your world. Not taking care of it does.

If you’re newly diagnosed just know that there are so many of us that have gone through the same thing and are still here thriving and living a life full of PMA (positive mental attitude). The road ahead is rocky, for sure, but the fact that there is a road is reason enough to be grateful."

Kenny

 
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Age:  28     Year Diagnosed: 2005    Location: Rowland Heights, Ca

"Growing up we had a family dog that had type one diabetes. I remember my mom giving her shots before she ate. That was the extent of my diabetic knowledge back then. So when the signs of this disease started to be more noticeable in me, we had little idea as to the weight of what that actually meant.

I was given my official diagnosis on January 10, 2005. I was suffering from a sore throat, and when my mom described to the doctor some of my behavior leading up to our visit, they decided to test my blood sugar. It ended up being too high for the meter to read. That was when one chapter of my life came to a close, and this new diabetic one began.  

I was immediately admitted to CHOC Hospital. I owe the doctors and staff there so much for fighting the hard fights and for helping me come to understand what was happening to me. 

However, following all of that, I found it a struggle to keep myself on track. A few years after receiving my diagnosis, I found myself in a stage of semi-denial. I stopped using my Lantus and only did Humalog when I ate. I was barely taking care of my diabetes, and in so doing, I was barely taking care of myself. My actions landed me back in the hospital for a two week stay, during which I had a very long talk with my doctor, who at one point told me, “If you hadn’t come back in when you did, you wouldn’t have made it to tomorrow.” Those words will forever be burned in my memory. 

It’s been truly amazing over the last few years to witness the growth of this community of people like me — but it wasn’t until lately that I’ve become more active in this amazing community. There are quite a few people that I owe a huge thank you to for helping me see all the support that everyone has for each other. It has inspired me to want to do more and help more . 

Having a disease that is so misunderstood, I often kept it to, “I have type one diabetes.” I would speak very little when people asked about the devices attached to me. Lately though, I’ve been more invested in trying to help people understand what we go through. All type one diabetics have a similar fight to fight, but every person’s battle is their own, and everyone has a different outlook and perspective on the disease. But when fellow type ones come together to help each other through the hard times — well, that’s an amazing thing, and I’m so happy to now feel more and more a part of this community. 

I’m seeing my life with type one in a different light nowadays — a better one —  which is due in large part to this ever-growing support system. I’m not ashamed or embarrassed of being a type one diabetic. If you choose for it to be, this disease can be viewed as an empowering tool to help bridge the information gap that much of society has about it. My outlook now is more positive and productive then ever before. And that has very much to do with all of you reading this."

Kayla

 
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Age: 27    Year Diagnosed: 2006   Location: San Diego, Ca

"Ever since I was born I battled with depression. I struggled with it my whole childhood and at the age of 13 years old, I tried to end my life. At 16 I was diagnosed with type 1 diabetes.  I couldn't' t accept this new life and I wanted to end it so badly. My first endo appointment I had I saw a quote in the waiting room that was basically about being thankful for your struggles because at least you're alive to see them. After I read that quote it hit me....I had to look at life differently. I took my life for granted before and now I have to fight to live to see the light of day. My way of looking at things may be shocking, you may not agree and you may think otherwise but thinking this way helps me go on. Knowing that I overcome this on a daily basis makes me proud of myself and who I have become. I love myself enough to keep myself alive because thats what diabetes is... a disease based on how much you love yourself. If you love yourself you will live a long and healthy life with diabetes. If we want to live, we are the ones the can control that. I always tell myself "YOU ARE YOUR OWN HERO". I can proudly say I have had diabetes for 11 years now and I have finally accepted having this thanks to the type 1 community. Talking with other diabetics and not feeling alone has helped with my acceptance!"

Kendall

 
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Age: 27   Year Diagnosed: 1994    Location: New York City, NY

"My current roommate found out that I have diabetes when we were moving in and the box that was carrying all of my purses broke at the bottom. Every single test strip had fallen out of my purses and accumulated on the bottom of the box, so when the box broke there was a mountain of about 100 of them on our brand new rug. We both looked down at the mountain of bloodied test strips and there were a couple beats of silence. Then I was like, "Yeah, so...I have diabetes". And she was like, "I know, I creeped on your Instagram." And then I said a little thankful prayer for social media.

I guess overall I wish the general public didn't feel as if they're all endocrinologists. The majority of times I get annoyed is when random people are telling me what to do as opposed to asking me about Type 1. A lot of people think they can hide behind this excuse of "caring about me" while telling me how to manage my diabetes.  I always find that so atrocious - that some random person I only see every so often feels as though they know more about treating my chronic disease than I do. Whenever people do make those kinds of comments, I ask them when they received their medical training because I didn't realize they were endocrinologists. Either that or I start to grill them. If you're going to tell ME that I can't eat a gluten-free cupcake because of something you read online or saw on television (which is most likely information not based on factual evidence), then please tell me how many carbs you believe to be in the cupcake, what my BG was 15 minutes ago, how much insulin I should have given for the cupcake, then maybe your recommendations for what I should do if I accidentally under or over treated, etc. That usually shuts them up because they realize they have no idea what they are talking about. If it's someone I have a jovial relationship with I'll usually say, "Oh!! My bad...I forget that I've been dealing with this for over 22 years!!" and they'll be like, "Point taken, do your thing." It's a bit frustrating - this idea that diabetes is a joke, and only something you get if you're fat or eat too much candy, and it's turned diabetes into a disease that people feel they can give their two cents on instead of asking a simple question, like, "Hey, I thought you weren't allowed to eat cupcakes." Am I wrong?

If you don't like your endo, find a new one! Having a good relationship with your endo can make a world of difference. Don't be ashamed to start researching different approaches to care if your endo is stuck in the mud, so to speak. I've discussed so many different approaches to my care with my endo and it has been so helpful because I finally feel like I've found an approach to diabetes management that truly works best for me. I would also recommend reaching out to other Type 1's. I didn't have any friends with diabetes for 22 years, and making my Instagram account has been one of the best decisions I've ever made. I love having friends with diabetes and I can imagine how helpful it would be to meet other diabetics if you were recently diagnosed Also, if any of your friends, family or loved ones don't want to take the opportunity to learn about your diabetes and how to help you, cut those ties and tell them to go screw themselves. And, if you need to take a break from diabetes social media - do it. Everyone deals with their diabetes in their own way. Some people like to talk about it and others wish it was never brought up. I've been on both sides at different times, and they are both fine ways to deal diabetes as long as you are taking care of yourself."

Craig

 
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Age: 45   Year Diagnosed: 1999   Location: New York, NY

"There's actually two specific misconceptions about T1D that I wish would change. The first is based in educating the general public; the second is based in educating ourselves. First: the common misconception that, in the mind of the general public, 'diabetes' is typically viewed as only one disorder. While there's definitely some overlap at times, as someone embedded in the day to day, I know there are many flavors of diabetes; most with a catalyst that was beyond our control. Second: that T1D limits people. This has been a focus for me as I've sought out and encountered countless T1Ds who have achieved seemingly android-like accomplishments. From climbing Mt. Everest to running across the Sahara desert. From touring the globe as a punk rock musician to creating remarkable pieces of art with deep messaging. These individuals are a part of a community of inspirational people who happen to manage T1D. Their message of 'no limits' needs to be heard by the world, especially by those affected by T1D who don't yet recognize their potential despite a diagnosis." 

Anthony

 
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Age:  31    Year Diagnosed: 2015   Location: Coconut Creek, FL

"Growing up I was very active and always on the go. I would have to use the bathroom a lot and was always drinking water. I joined the army and it was the same thing. Multiple deployments and lots of blood work and nothing was ever said. I got out and went to school for automotive. When I got hired at the dealership, I had to get a physical done. That’s when the doctor said that my BG reading was off the charts and I had to go to the hospital. My life changed at that moment. When i was first diagnosed, I was truly alone. I had just moved to South Florida, was just starting a new job. I have no family here. It took me a while to finally accept that this is my new life. Social media has helped me out so much. I know that I’m not the only one and I will always have everyone's support."

Dominika

 
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Age: 24    Year Diagnosed: 2003   Location: Los Angeles, Ca

"Many people think I have a pager or Ipod when I show off my insulin pump! They think that I am a robot - which in a way I am!

When I was diagnosed, my blood sugar was over a 1000! Fortunately I was awake and I have never went into a come. I was really scared and confused when the doctor told me I was now type one diabetic. 

I would advise everyone to accept this new part of their life and never give up! There might be bad and good moments but those events help us learn."

Justin

 
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Age: 22   Year Diagnosed:  1997   Location: Los Angeles, Ca

"When I was applying to universities, I knew I wanted to go to USC and study Music Industry. I worked for 2 weeks trying to get a phone call with the dean of the program but ultimately had no luck. Finally, my family decided to take a chance and have me fly from Montreal to LA. The plan was to show up, knock on his door and ask for 15 mins to chat. When I landed in LA, I turned my phone back on and saw I had an email in my inbox from the program chair. He had finally responded and asked if I could meet with him the following morning at 10 AM. So my mom and I drove to campus in our rental car. I went into the The Music Complex and she waited parked outside. I finished the meeting close to an hour and a half later and sat in the car. "I'm getting into this school" I said to her. "Why?" she asked. Turns out the program chair's daughter was also a T1D."

 

Elliott

 
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Name: Elliott    Age: 39    Year Diagnosed: 1994  Location: Los Angeles, Ca

“I’ve been a diabetic for so long now, but it wasn’t until I was on American Idol that I realized I could actually use my platform & exposure to try and raise awareness, and inspire fellow diabetics. Since then, I’ve been privileged to meet so many people who share the same disease AND relatable stories. Now I don’t feel as alone or as outcasted as I did before Idol...so, while I get to help others, it also helps me in the process!

I would say first & foremost don’t let it discourage you, or get in the way of your goals and aspirations. Even though there’s no cure (yet), it isn’t a life sentence! no two days are the same living with diabetes, and it never takes a day off..so I tend to look at it as being unique and different, and I’ve tried to embrace that over the years..I would encourage any fellow diabetic to get involved with walks, fundraisers, and do whatever you can to raise awareness for our plight.”

Karen

 
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Age: 33    Year Diagnosed: 1995    Location: Los Angeles, Ca

"People often say to me “You don’t look diabetic”... I am shocked how many people are ignorant when it comes to diabetes. Diabetes does not have a specific look or age. It does not stop us from doing things. This is one big reason why I decided to be open about my diabetes on Instagram. Little did I know, this was going to change my life in a positive way. I have been honored to meet so many other wonderful type one diabetics. Together with my 'diabuddies', we are changing the way other people see type one.

It will be 24 years since I was diagnosed with type one diabetes and I have only had one seizure due to a low blood sugar. I was living with my parents, it was around4:45 a.m. and was woken up because I was drenched in sweat. I sat up in bed with my eyes wide open but was non-responsive when asked to check my sugar. I began shaking which of course scared everyone in my house and they called 911. My dad attempted to give me orange juice but my teeth were clenched, so next he poured spoonfuls of sugar in my mouth. Soon, I woke up with my family surrounding my bed and the paramedics were on their way. By the time the paramedics checked my sugar, I believe I was 70 so they gave me some sugar gel to help raise my sugar. We did not have a glucagon shot. It would have come in handy that day."

Arlene

 
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Age: 28   Year Diagnosed: 2000   Location: Torrance, Ca

"It took me almost 12 years after diagnosis for me to really get my head straight and figure out this diabetes part of my life. I had to work full time, went to school full time and also be a type 1 full time. I had no choice but to get it together-so I did . But a few years later things changed, my grandmother passed away after months of taking care of her and it wasn't easy for me. It was hard because I felt I could have done more and kept playing things back in my head but I knew there was nothing more I could have done. Then 1 year later the best thing happened and I found out I was pregnant while going through a diabetes trial. Once my fiancé and I found out, we knew things had to change. So I lowered my A1C from 9 to 5.4 throughout the pregnancy and we had a beautiful healthy baby girl named Sophia. Two years later, here we are with a healthy boy and I had Jacob with an A1C of 5.5 . They made me take control of my diabetes because without these two blessings my A1C wouldn't be this awesome. I knew I couldn't let diabetes take control of me. I had to take control and show that I have diabetes, not diabetes has me! I never thought I could have such a low A1C until I actually applied myself and saw how great it made me feel."

Rob

 
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Age: 28   Year Diagnosed:  2005  Location: Dallas, Tx

"I’m trying to think of something unusual or different, but I think early on I used to be more sensitive about people asking questions about it. One time I snapped at one of my college basketball teammates pretty harshly, when I think he was just curious more than anything else. I think he was just asking about my pens (I was on MDIs at the time) and I just flew off the handle at him. I try to use it as a reminder that curiosity isn’t always invasive and people can have good intentions with their questions.

When I was in college i answered a question in class and brought up that I had Type 1 Diabetes. It was one of the first times I’d personally stood up and said “I have diabetes AND...” publicly and really taking ownership of it. After class a friend who I’d worked on a few projects with and seen around school came up to me and said “I had no idea you had Type-1 Diabetes, my cousin just got diagnosed and the doctor told him he couldn’t run triathlons anymore. I know you play college basketball so maybe you could email him and encourage him?” Long story short, I sent him a few emails back and forth, encouraging him that he could do whatever he wanted as long as he took care of himself. 6 months later I got an email with no subject line, just a photo of him holding a medal from running a triathlon. 7 years later in a hotel in Bogota, I was thinking about the way that email made me feel, and that was the beginning of Diabetics Doing Things.

It gets better. Take it slow. Talk to other T1Ds. Talk to your parents, get them someone to talk to. Don’t let anyone tell you you’re not dope. Test your blood sugar. Exercise and stay hydrated. Use Diabetes puns liberally. Be careful of bad diabetes related fonts."

 

Erin

 
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Age:  26 Year Diagnosed:  2013  Location: Riverside, Ca

"I was using MDI to manage my diabetes during the time of my wedding. I remember right when the reception started, I went to my bridal suite with my maid of honor to inject my insulin for dinner. I didn't want to use my arms in case it bled and got on my dress, so my maid of honor held up my huge ballgown while I dug through the tulle to inject in my stomach. Right at that moment, another one of my bridesmaids walked in with her husband. Luckily, her husband was a few steps behind her, so he didn't see anything. But you know you have the best bridal party when they help you dress, pee, AND inject insulin!

If you were recently diagnosed, I want you to know this: YOUR LIFE ISN’T OVER! I wish I would have had someone tell me that four years ago. You will still be able to eat that macaroni and cheese, go on that school trip, get your dream job, or have children. It just takes more planning and commitment. You are stronger than diabetes.

Alex

 
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Age: 8  Year Diagnosed: 2015  Location: Los Angeles, Ca

"I broke my arm before school started and on the first day I talked to my class about diabetes and I asked if anyone knew what diabetes was. One kid saw my cast and said, 'It makes your bones break easily.'

I like the JDRF OneWalk because there are so many other Type 1 Diabetics around me.

My piece of advice is to make sure you always bolus for what you eat."

 

Arden

 
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Age: 12   Year Diagnosed: 2013   Location: Los Angeles, Ca

"On the day I was diagnosed, before we went to the hospital, my father bought me a donut because he thought I could never eat sugar again.

I love diabetes camp because I can escape from home and be with people just like me.

My piece of advice is to learn how to do shots yourself because it's weird having strangers (nurses) at school, doing it for you."

 

Lauren

 
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Age: 18  Year Diagnosed: 2013 Location: Redondo Beach, Ca

"I wish I could change the way that type one and type two are seen. They are seen as the same thing when they are two very different diseases. And I wish people didn't think I had the "bad" diabetes as opposed to the "good" diabetes.

Find other diabetics your own age. People who share your same struggles and experiences. Diabetes can make me feel very alone and knowing there are others like me and knowing they are here for me really helps get me through the rough days."

Heather

 
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Age: 27  Year Diagnosed: 2015 Location: Long Beach, Ca

"Growing up 2 out of 3 brothers, my dad and Grandpa had type 1 diabetes. My younger brother had a really difficult time with diabetes. I would always give him a hard time about sucking it up and to "get over it." The poor guy was a child. Now being diagnosed and going through the roller coaster of diabetes, I now know how wrong I was. I wish it was explained to me and I had never been so hard on him.

Find what works for you but do not be ignorant. My family is so comfortable in their normal routine that they settle with old school methods. Try a CGM (continuous glucose monitoring system) or an insulin pump. Always research and help to improve your quality of life because nobody else will advocate for you more than yourself. If your doctor is not offering you the latest technologies, get a new doctor."