Nicole

 
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Age: 20   Year Diagnosed: 2007   Location: Macomb, Michigan

"When I was in 10th grade I went to go test my sugar. I get back to class and my teacher asks me if I'm okay and I said, 'yeah I'm just high'. The teacher and my friends started laughing and I said, 'not that high!. I mean my sugar is high!'

Out of my 10 years of being a type 1 diabetic, I have experienced DKA 4 times and it's so scary to be in. You have so many thoughts running through your mind.

Never give up, diabetes is really difficult to control and there are a lot of ups and downs but you will get through it."

Sahil

 
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Age: 25   Year Diagnosed: 1998   Location: Detroit, MI

"The thought that we had any control on being diagnosed because we 'ate too much sugar.' It is one of the most frustrating situations when people think you cannot have something or prevent you from eating it because they believe those decisions are what led to being diabetic in the first place.

I was able to submit paperwork through the special aid needed during testing department at my university, which gave me 45 minutes extra in a room for every exam I took. I never ended up needing the full time, but it was awesome getting it.

My biggest piece of advice is to keep glucose tablets everywhere.  Buy 5-6 of the big bottles and keep it in a car, by the bed, in a gym bag, in a backpack, and wherever else is commonly used when you cannot get food in your system right away. Will save you time, money, and fear whenever sugar does dip low."

 

 

Amber

 
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Age: 18   Year Diagnosed: 2016   Location: Detroit, MI

"Since my diagnosis, I have been grateful for the resources such as camp and social media because they have allowed me to meet other type 1s and keep in touch with them. I think this is important because it reminds me that I am not alone in this journey with type 1 diabetes.

My greatest piece of advice is to always be prepared because you never know what's going to happen in a day."

 

Michelle

 
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Age: 23    Year Diagnosed: 2009   Location: Pasadena, Ca

"In high school my pump unclipped from my pocket at the wrong time which led to me accidentally flushing my pump down the toilet. Luckily, I caught it by the cord and had to hold on tight until it stopped flushing and had to pull it out....talk about embarrassing.

Get involved in the T1D community! It makes the biggest difference. It starts off as a support system then becomes a great friendship!"

Sara

 
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Age: 29   Year Diagnosed: 2003   Location: Sweden

"One thing I want to share is how my diabetes has given me so many nice friends around the world. It feels like we have formed an incredibly nice and genuine family with diabetes. No matter who you are, where you come from and how you take care of your diabetes- everyone is welcome. We should be lucky that social media has a great impact and can connect us from all over.

Life does not end. I would like to say that it's only you who can limit to what you can and can not do. You don't have to choose whether to accept diabetes or not, but only you can make the most of the tools you have and get. Don't stress over individual blood sugar values because it will not kill you. Make sure you have fun on this journey and are open to try new things, even changing routines and habits. It can be difficult, but having an open mind will make you feel better even when living with this chronic disease."

Robert

 
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Age: 25   Year Diagnosed: 1997  Location: Simi Valley, Ca

"Everybody who has spent an extended period of time with me has, at some point, uncovered one or more (often more) purple BD sterile needle covers that I use for my insulin injection pen. They find them in their car, under couches, in their purses, in the kitchen, etc. I had a roommate once start a "money jar" where every time he found one of those purple BD needle covers, I'd have to put $1 in the jar. By the end of a full year, there was enough money to go out to a nice brunch in Santa Monica. I've tried to get better about throwing them in the trash, but every once in a while, I'll still find one on the floor and laugh.

I feel really blessed that T1D is a manageable condition. Although it can often be difficult, annoying, and at times a pain in the side (see what I did there), T1D does not prevent me from going after my dreams and living a fulfilled life."

Carrie

 
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Age: 23    Year Diagnosed: 2002   Location: Los Angeles, Ca

"Take everything day by day. You can't tell someone that it's going to get easier because it doesn't and that sucks. All you can tell people is you will find a new normal and you will get through the bad days and weeks and months when you struggle and you will be the strongest person you know and your own hero for getting through it.

Dave

 
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Age: 47    Location: 2016    Location: Los Angeles, Ca

"I was just a guest on Hollywood Handbook, a really funny podcast, and just as we were getting into a rhythm and making each other laugh, the producer said, "Does anyone else hear a distant ringing?" And we did. We all looked around, wondering if a fire alarm had been pulled. I took my headphones off to see if I could locate the noise, and of course it was coming from my very own butt. My insulin pump was failing, on microphone. So that's how I told those guys I was Type 1.

Community is so important. Just being around other people who have what you have- and are ALIVE- eases the stress. Go make a T1 friend, go for a run, have the experience of fixing a low or a high with someone who gets it- it makes a difference.

Jazmine

 
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 Age: 24  Year Diagnosed: 2005  Location: Rialto, Ca

“As a type 1 diabetic I’ve come across many misconceptions about my disease. The first is  that our  lives and choices  are limited. That we diabetics, only have a certain amount of options in life. Especially when it comes to food. Being a T1D just means  I need to make sure my sugars are at a balance, which I’m able to do so thanks to my insulin. The second misconception I would change is the confusion between type 1 and 2 diabetes. Often, people tend to confuses 1 and 2. People like to assume that I’m diabetic because I’m unhealthy. Again, wrong! I was born with type one diabetes, diagnosed at the age of 12. I made no bad decisions that lead me to being diabetic. Honestly, I don’t expect the world to know about my disease, I just ask that they don’t make assumptions.

When I was diagnosed with type 1 diabetes at 12 years my world fell apart. I was all of a sudden categorized as different from the rest. I felt like the only people that ever spoke to me about diabetes were my doctors. Those conversations were really only about my test results or medications. No one ever really spoke to me about living with the illness or advise me on things the illness would affect. There wasn’t anyone I knew in the world that could understand me and what I was going through. Until my fiance, Martin, told me about  diabetic meet-up- groups. A place to meet other diabetics like myself? After  finally attending one, I met the most amazing people that later became my best friends. Not only did they understand what I was going through, but they were also able to help me get through it. They too have gone through conflicts because of being diabetic and were able to gain knowledge from it which I later benefitted from. Ultimately, the point I’m trying to make here is go out there and meet other diabetics! The feeling of finding others like yourself is similar too finding a family. Its an automatic bond and love for one another.“

Andrew

 
 

Age:  28   Year Diagnosed:  2017    Location: Long Beach, Ca

"Whenever someone asks me what my pump is, I usually say its a monitoring device because I'm on house arrest, or a GPS tracker so my girlfriend can keep track of me.

Being diagnosed changes everything, its absolutely life changing. But it doesn't have to be all negative, and you cannot let it define you as a person. Who you are, should not ever change.

Know your rights, you're in a protected class now. I joke a lot about being an ADA class member, but certain places don't always understand certain special needs we may have. For example, going through a magnetometer, with a medical device, it could be dangerous. Know your rights, stay calm and respectful, but never do something that is going to jeopardize your health for the convenience of others."

Lisa

 
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Age: 47    Year Diagnosed: 1991    Location: Los Angeles, Ca

"That it's easy to manage. It's not simply balancing your insulin with food. As we know there are 42 factors that can effect your blood glucose. Thinking and acting like a pancreas is really hard. Type 1 can also be fatal. Too often this invisible disease is not taken seriously because you can't see us "rusting from the inside out," as my good friend likes to say. Well, not only is this disease stealthy -- especially the longer you've had it -- it can also kill you in the short term with a hypo or hyper episode.

A story I'd like to share is hearing the beeping of my insulin pump, and my 3 year old son's reaction to it: "Mommy, is it time to take your insulin?" On the one hand it's good to have another pair of eyes and ears on my T1D, but on the other, I wish my sweet toddler didn't have to see his mom struggle with this disease.

Don't give up hope. A cure will -- for real -- happen in your lifetime.

Taylor

 
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Age: 27   Year Diagnosed: 1992  Location: Santa Clarita, Ca

“I  was diagnosed with a very rare auto immune disorder called IPEX at 18. Most infants diagnosed with IPEX do not live past a few months, the most a couple years. The reason I am a Type 1 Diabetic is because this auto immune disorder attacks your immune system. There have been a lot of sh**ty days living with this disease, but if there is 1 thing that I can be happy about in having this disease, it's being a Type 1 Diabetic.  I have met the most amazing people with T1D that I now consider lifelong friends. Most days, my self confidence is on the lower side because of what my IPEX has done to me physically. When I am with my T1 friends, I feel as confident as ever. They see the friendship I have to offer, but most importantly, they see the love, care, a strength I possess. My IPEX and Type One Diabetes does not define who I am. What lies within me does, and my Type One Diabetic friends remind me of that every time I am with them. I think it’s because we can relate in that we have a life long illness, and that is something special I get to share with so many wonderful people.”

David

 
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Age:  21   Year Diagnosed: 2008   Location: Riverside, Ca

"I once was discriminated for having Diabetes at the airport security . The security guard told me I “didn’t need” my glucose supplies and threw them away right in my face and was very rude about it . That made me feel very bad for having Diabetes and she didn’t even know what I was going through or how that experience made me feel .

One of the biggest misconceptions I wish I could change is that We CAN eat sugar . In fact , we need sugar to stay alive sometimes !

A piece of advice is that it gets better . It may not seem like it does , but over time , you learn to deal with your struggle like a pro and it becomes second nature."

Lauren

 
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Age:   35    Year Diagnosed: 1994   Location: Pittsburgh, Pa

"Time with diabetes is mystifying. There were decades where I thought I knew everything there was to know about treating it, or I believed it would always be impossible to control. Once you gain an insight or skill, it seems baffling that you didn’t know it all along. Because it starts to seem obvious. 'How could I NOT have known to weigh my food/change my basals weekly/include fat with my carbs'?

The only time I passed out as an adult, I woke up on my couch with my husband. There was a police officer who had responded while we waited for the ambulance. I wasn’t lucid yet, so I didn’t understand how or when he had arrived. To me, he had just appeared. Because I was still a little off, I kept whispering (loudly!) that I didn’t know who he was was and that I wanted him to leave. He was an extreme professional and was neither visibly offended or amused by me."

Christina

 
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Age: 40    Year Diagnosed: 1998    Location: Pittsburgh, Pa

"I was diagnosed with Type 1 diabetes at age 21, while attending college at Penn State. More recently, I started an Instagram featuring two plush monkeys who also have diabetes. Their names are Hairy and Leeny of @t1diabesties . This has been a fun way to be creative with ideas relating to diabetes that makes others smile, laugh and feel uplifted. Adults, teens and children alike are relating to these two through their Instagram account. An unexpected result of starting this Instagram has been the ability to educate the public about Type 1. Being in the middle of Dunkin Donuts and Starbucks with two little monkeys, one with a pump and one with a syringe, definitely interests onlookers who have questions of what this crazy lady is doing!! I take this opportunity to discuss Type 1 along with the differences and similarities to Type 2. Hairy and Leeny have also provided me with several meaningful connections through the diabetes community. One great example is my favorite group of Pittsburgh Type 1's- t1yinzers!!! We've gotten together several times since first meeting and have regular contact in between get togethers!! The #t1yinzers have been a silver lining in my life."

Holly

 
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Age: 31   Year Diagnosed: 2015   Location: Pittsburgh, Pa

"I had a baptism by fire. I was misdiagnosed for months and when they eventually figured it out, I was hospitalized on my birthday a week before Christmas as a mother of a 5 month old who had just returned from maternity leave to teaching German full time and scheduled to take 19 students on a 2 week tour of the German speaking countries of Europe in 5 months time. (Icing on the cake: I was "taught" how to inject insulin via phone because of offices being closed for Christmas!) Being diagnosed as an adult and a new mom, you face both the T1D isolation AND the new mom isolation feelings, so it was a one-two punch for me. In the beginning I was horribly sad, lonely, and so ridiculously lost on many different levels. Since I've reached out and made connections both in the on-line community and my backyard, my outlook and attitude has changed immensely. Those local connections - the T1Yinzers - have changed my life for the better. I cannot imagine my life without them and every meet-up is full of understanding, hope, and acceptance.

No matter how old you are with T1D, you need your people to connect with. You may have different views, different diets, and different stories, but you all share the same connection. And that connection makes you feel just a smidge more normal in this battle.

Emily

 
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Age: 23    Year Diagnosed: 2016   Location: Pittsburgh, Pa

"The definition of type 1 diabetes itself is something I wish I could change. I wish everyone knew the real medical definition of what it is, how it works, and how it impacts the daily lives of type 1 diabetics and their caretakers.

The T1 Yinzers, a very special group of Type 1 diabetics based in Pittsburgh, PA, changed my journey as a Type 1 diabetic for the better. We all met through a combination of Instagram and the Beyond Type 1 app and finally met as a full group in person in March 2018 for breakfast at a popular spot in Pittsburgh. After we all ordered our meals, the table was crowded with conversation of “how many carbs for this?!” and all of the sudden, it got silent as we all took out our insulin pens and pumps to bolus. It was truly the craziest moment because for once we weren’t the outlier at the table and no one thought the beeps or needles were weird. It was an incredible moment of feeling understood for the first time in person!

1. IT WILL BE OKAY. I was told this when I was diagnosed, but I didn’t believe it. I wish I had. I think we all have to process our diagnosis in a way that works for us, but I want all newly diagnosed patients to understand it truly will be okay. That life is changed, but in a way that becomes second nature. I’m not even two years into life with Type 1 and while I know there is plenty more to experience and learn, I’m confident in my decision making, my knowledge, and my experiences thus far. 2. YOU ARE NOT ALONE. My diagnosis and my journey would be so different without my Type 1 diabetic friends, most of who I met through online support groups and T1 fundraising and awareness groups. It is so much easier being with people who just get it. Surrounding yourself with great, positive minded people who bolus with you at a breakfast table for all of the bread is truly one of the healthiest things you can do for your journey.

Jamie

 
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Age: 37   Year Diagnosed: 1991   Location: Butler, Pa

"Roughly 6 years ago, I was diagnosed with Polycystic Ovarian Syndrome(PCOS). After counting calories, hitting the gym almost daily and keeping my blood sugar in check, I was unable to lose any weight and found that if I did go off track, I would gain weight very fast.  This has been an added challenge in controlling my type 1 diabetes as it makes me extremely insulin resistant.   I am still trying to find what works best for me to make these two challenges work together.  Sometimes I get very frustrated due to not seeing any results and will fall off track but luckily my new found type 1 family always motivates me to get back on track!  They are an inspiration to me without even trying.”

Definitely try to connect with other Type 1's as soon as possible. I was diagnosed at 10 years old and until last year, I didn't really know any other type 1's. Thanks to social media, I was able to connect with a group of 8 other T1d's that live locally and it has been life changing! My friends and family have always been so supportive and willing to learn, but its different than being with people that actually live it. Our little group has quickly become my extended family and now I don't know how I ever did it without them!"

Lauren

 
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Age: 24    Year Diagnosed: 2010   Location: Pittsburgh, Pa

"I learned to not hide my diagnosis because it only makes things more difficult. When I was embarrassed about having type 1, I hid finger pricks and shots at first. Then I started snacking without checking or dosing. Eventually months went by where I literally didn’t check my sugar at all. I look back now and know that I was slowly killing myself and I can’t believe I have no complications. I slowly started being very open about my diagnosis and not caring if people saw me giving myself injections or checking my sugar. I have a family who loves and supports me and are now very involved in my care.

Find a group of others living with type 1. When I was first diagnosed, I didn’t care about myself. I hated the fact that I had to live with a disease and not know anyone else who lived with it made things even harder. Finding other people who understand the daily reality of living with this condition saved my life. I have a small group of great friends who get it. And that makes the biggest difference."

Brent

 
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Age: 29    Year Diagnosed: 2001   Location: Pittsburgh, Pa

"I remember one of my first “going out for dinner” adventures after being diagnosed was to Bob Evans. I was overwhelmed between trying to figure out what would fit into my “dinner” carb counts and something I actually enjoyed. Couldn’t tell you what I ordered, but when I tested my blood sugar, I had my first “gusher”. My brother and I thought it was hilarious, mom was hysterical, and dad was a little of both. Didn’t take long for me to get used to my new normal.

One of my strongest feelings about having Type 1 is that I’m thankful. I’m thankful to have grown up in and been diagnosed in the age of technology that I did. I’m thankful to have almost endless gadgets and information out there to help me manage my diabetes. I’m thankful for having my group of yinzers to hang out with & we can talk about everything that makes NO sense to most people, and we all understand how each of us feels.

Don’t sweat it. Network. Be patient. Reach out to the experienced ones. We’ve all been there and asked our fair share of “stupid” questions.