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.

Devin

 
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Age: 27   Year Diagnosed: 1992   Location: Burbank, Ca

"I was diagnosed with Type One Diabetes at the ripe age of 15 months old. I don't remember what life is like NOT having diabetes. When people ask me if I ever get used to taking injections, it frustrates me beyond belief. Sure, I get used to the action of it, but no I do not get used to the repeated jabbing, stabbing, ripping layers of flesh pain. It's still a needle. 

As a child, I followed a strict schedule and diet on R and L insulins. At the age of ten I switched to Humolog and Lantus in which I was taking 8-12 injections a day. When I hit puberty, I became a test dummy for my endocrinologist team whom tested me for every different strands of diabetes (apparently there is eight), put me on every diet imaginable and instead of switching my insulin just kept up'ing my dosages. My body became immune to the ridiculous amount of Lantus I was taking daily (went from 30 to 60 to almost 80 units). I was exhausted, fatigued, extremely moody, emotional, not eating or sleeping properly. My weight fluctuated drastically. My focus on art had  diminished and I was angry, sick and isolated all of the time. I lost a number of close relationships because of the drastic change in my being. And to those who stuck by my side, I dug my claws in so deeply they must have permanent scars. It was an ugly time in my life I try very hard to bury deeply inside of me. Brittle Diabetes was not a subject that ever came up, or a term that I discovered until very recently. Everyone around me assumed my hormones were acting up because of my age, but it turned out to be much deeper than that. Not only am I brittle, but I have over active adrenal glands and a higher level of estrogen that makes me extremely insulin resistant and I never know when it is going to happen. 

However, I am still grateful to say that I am a diabetic of 26 years. I would not know maturity, graciousness or patience as I do now (even though its taken me years and I am still far from mastering those attributes). 

I am a visual, Makeup and Special Effects Artist, Former Tattoo Apprentice, Esthetician and Talent/PR Agent. I received a scholarship from Montessori, High School of Art and Design for Visual and Performing Arts as well as a scholarship to Cooper Union for sculpting. I grew up riding horses and took 8 years of opera and broadway style vocal, instrument, dance and acting training. I had a brief stint on Broadway as a child and did child modeling for a number of small brands. 

Though there have been set backs, I have not let my diabetes stop me from doing what I love."

Cassidy

 
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Age: 27   Year Diagnosed: 1993   Location: Orange County, Ca

"I shared recently with some T1D friends that my childhood neighbor described me as "buff" at the end of Bike Beyond. When I told them about my habit (impressive feat of strength?) of tightening the battery cap on my insulin pumps so tightly I crack the plastic I earned a new nickname: The Hulk.

I find many people think of T1Ds as physically fragile and that's just wrong. Sure our bodies turned on us, but as a group of people we're tough as nails.

Bike Beyond wasn't life changing because I cycled across America as a non-cyclist, it was life changing because I was immersed exclusively in the T1D community for 3 months. The Diabadass Tour is my way of remaining active and engaged within our community which I've come to love so much. We're bringing people together across the country to make friends, have an interesting conversation and try new athletic activities. Our community is better when we're together, side-by-side encouraging and supporting one another."

Chelsea

 
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Age: 30    Year Diagnosed: 2015    Location: Dallas, Tx

"I have experienced several big life changes in the past three years since my diagnosis, things like moving across the country, relationship changes, job changes, and after every single one I have realized that no matter what "I got this" because I deal with T1D everyday . It's made me so much more self aware , knowing what I am truly capable of, physically, mentally, and emotionally. I've learned to see living with T1D as a confidence booster. If I can say "I got this" to managing my health with all of our challenges as T1Ds I can say "I got this" to just about anything put in my path.

The biggest misconception I would change is that diabetes is not a big deal. So many people don't know that we constantly make life impacting decisions with every shot, every correction, every bite. It seems like no big deal from the outside looking in, just a few pricks and shots, or a weird medical device in my body, but some days when the blood sugar struggle is real it would be nice if people around me understood that it's not that easy and it does impact our daily lives and how we feel a lot more than you can see."

Rachel

 
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Age: 52    Year Diagnosed: 2008    Location: Byron, Bay Australia

"I often think about how silly I felt the first time I took an insulin injection. I was sure it would kill me. Instead absolutely nothing happened...not only that my blood sugar came down and I felt amazing. I had more energy than I'd remembered having since my childhood. Instead of seeing Insulin as the enemy I saw it as my best friend. I felt like such an idiot assuming the worst.

People often ask me how I can be so disciplined with my diet and exercise. I wish they could get that it's not discipline, it's the passion that I have for life and living. If I didn't stay vigilant with my diet, yoga and insulin injections I could die. Its really a life or death situation. I often share that I had great food and did whatever I wanted for 42 years...now I get to work hard to stay well... and because I love sharing and helping others it's so worth it!

For me Yoga is my solace when it come to living with diabetes. When I step on the mat I don't think about diabetes. I focus on my breath, the movement, the artful discipline and my total devotion to the practice. There are moments during the practice where I can cry and release tension and also moments of deep gratitude. I also know that Yoga makes me the healthiest I can be in spite of living with diabetes. It's a lifesaver.

If you are on MDI's get yourself an insulin syringe with 1/2 unit markings so you can fine tune your doses and use SIRI to help you count carbs."

Walt

 
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Age: 30    Year Diagnosed: 2000   Location: Pittsburgh, Pa

"I think people with Type 1 fall into the mind-trap that they are alone. Type 1 is an extremely isolating condition which makes managing it and taking care of ourselves that much harder. I wish that we as a community were more aware of each other and how shared the struggles and frustrations, that we ALL go through, really are. Much like the low snacks we all SHOULD have stuffed away in a drawer or bag somewhere, our Type 1 community is there to help during the times when things get too low to handle. Low snacks and our community will always be there but they only work when you use them.

A piece of advice or life hack I have is you can test if your soda is actually diet or not by checking it with your glucometer! Diet soda tends to come up as LOW or gives error number while regular soda give you a HIGH or bg in the 200s or 300s."

Sarah

 
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Age: 23     Year Diagnosed: 2000   Location: Lancaster, Pa

"When I was in elementary school we were in gym class playing volley ball and I could tell my blood sugar was dropping fast so I told the gym teacher that I felt low and thought I should go to the nurse and he thought I meant short/small and I was making an excuse to get out of volleyball. So then little 3rd grade me had to explain to him that my blood sugar was low not my physical height.

The best feeling is when you find/meet other diabetics. It makes you feel like your not alone, and that you can relate to that person in a way that not many other people can.

My piece of advice is to find your own flow. Everyone treats diabetes differently and diabetes affects everyone differently. Don’t be afraid to be different from other people."

 

Tanya

 
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Age: 50   Year Diagnosed: 1976   Location: Dallas, Tx

"Having T1D has ended up being one of my biggest blessings. Because of my diabetes I have an AMAZING job at JDRF that allows me to help others and brings me fulfillment and gratitude each day.

The biggest misconception I wish I could change is that there are ways to reverse or cure it. Nope, not yet. No matter how many tree saps I drink, or how much cinnamon I add to my foods, I will still have T1D!

Don't sweat the small stuff. This is a tough disease, and being a control freak makes it that much harder. There will be days that make no sense with blood sugars or there will be days when you make choices that aren't perfect. But this is the long haul, so love yourself and cut yourself plenty of slack.