Brent

 
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Age: 29    Year Diagnosed: 2009   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.

Kirby

 
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Age: 25     Year Diagnosed: 2014    Location: Oakland, Ca

"During my last year of graduate school, I'd landed an awesome gig as the Graduate Assistant for the Department of African American Studies at my university. I'd come in early on a Saturday morning to help set up for a regional conference for all of the department heads of Diaspora programs across the state when I realized I'd left my Omnipod PDM at home. I'd left my Omnipod PDM at home AND I'd neglected to humor the expiration alarm that had been beeping for a full seven hours prior. The siren of death inevitably came and I was so mortified that I ran into the nearest restroom, pitched the pod in the toilet and flushed it into oblivion (this is terrible for both your pipes and the environment--don't do this!) My stomach dropped anytime I saw attendees excusing themselves for a bathroom break. I could only liken this experience to the Tell-Tale Heart by Edgar Allen Poe. The Tell-Tale Pod? There may be a publishing deal there.

I wish that people were generally MORE health literate and LESS inclined to blame individuals for their health outcomes. I am a recent Masters of Public Health graduate and current public health researcher and nothing frustrates me more than armchair physicians. When I got diagnosed, I had so many people trying to "get me off insulin." I was given HCLF vegan meal plans, told to give up gluten, and criticized for my behavior choices--all by people I love. The cultural stigma of diabetes (type 1 or otherwise) eclipsed any compassion or empathy that these people had the capacity for and made them unkind. The science on autoimmunity (and its increasing prevalence) is very much emerging, which means there's still so much for all of us to learn. We just have to be open to learning and admitting what we don't know.

Health status is absolutely dynamic throughout the life course. We can choose to meet aging, pregnancy, chronic illness, accidents, weight gain/loss, etc. with grace, or we can choose stigma and shame because those are easy feelings to default to in the face of things we fear. I look at our current health landscape, both as a public health professional and someone who is chronically ill, and I see nothing but fear. From all sides. Fear mongering from self-proclaimed wellness influencers who preach moral purity in the form of orthorexic, restrictive "clean" diets, politicians who strike down public health polices designed to uplift marginalized communities, and people hellbent on chasing unattainable ideals of physical perfection. Type 1 diabetes has taught me to let go of that fear. It has made me more empathetic. It has taught me that health doesn't have to be scary. We don't have to let ourselves be ruled by fear. We can make the world better without it.

I'm a fairly new type 1 diabetic (4 years) but one strategy that has served me well is my three-strike policy. I use this policy with people who I spend a lot of time around (friends, coworkers, family, etc.). This means that I will correct tacky diabetes jokes and poor behavior only three times before limiting contact with someone. This disease is serious and I only want people in my corner who demonstrate that they are willing and able to learn how they can be an active ally to those with type 1 diabetes. My diabetes management only improved when I became more intentional about who I shared my time with."

Ashley

 
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Age: 25    Year Diagnosed: 1995    Location: Moraga, Ca

"When I was in high school, my best friend was helping me change my site and after I had explained to her what to do, she went to place the infusion set on my stomach and I squirmed away and shouted "DON'T GO PAST THE FRECKLE!" and we started laughing until we cried. We still joke about that til this day, especially on days when she helps me change my site. (Yes, she still helps me sometimes!) I guess I should mention that there is a freckle on my abdomen that whenever my sites are place too close to it or go on "the wrong side" of it, it hurts really bad. So the rule is to not pass/cover the freckle!

I'm embarrassed to admit that I still can't inject my own sites or shots, even though I've had t1d for 22, almost 23 years. I think my family babied me so much after my diagnosis and this is why I have a hard time doing things myself when it comes to diabetes.

Erik

 
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Age: 26    Year Diagnosed: 2008   Location: South Orange, NJ

"I eat about a jar of peanut butter every other day when bike touring. Most of the conversations outside of convenience stores or the side of the road begin with a similar question, "Are you eating peanut butter while biking?" Something I learned about cyclists is that these athletes are always hungry. Our goal is to eat roughly 4,000 calories, or twice the daily recommended amount. All this fuel is needed for the long time on the bike, usually six to eight hours in order to ride about sixty miles a day. You can clearly spot that I am a cyclist with type 1 diabetes because of my handlebar bag setup. In between the bars of "Dark Roast", the nickname of the REI Novara touring bike, sits my dad's handlebar bag - I found his driver's license from 1988 when cleaning it out for the first time. To the right is a jar of peanut butter with a pink fork that I picked up at Walmart the night before setting out on this adventure; in the middle is the receiver for the Dexcom CGM displaying blood sugar trends; and on the left is a jar of jelly to treat downward arrows. There are no doctors or resource guidelines on how to figure out this setup. We are all experiments with our own bodies and I've had a lot of failed trials and tribulations. What I cannot believe is that this adventure is coming up on a full year on the road. There is a navy veteran that I met at the top of the municipal elevator in Oregon City (Google it) who sums up this entire adventure, 'You are doing things that we never ever dreamed about'."

 

Courtney

 
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Age: 32    Year Diagnosed: 1992    Location: Forth Worth, Tx

"T1D and me have been rollin’ deep since 1992.  I didn’t have quite the tumultuous diagnosis story as some, as my dad and brother also live with T1D so I fell right into the ranks. People are often shocked to learn of my family’s life with T1D, but we take it in stride.  We’ve learned to help each other out through understanding and encouragement, a simple listening ear when diabetes just plain sucks, and let’s be real…borrowing supplies when needed!  Of course we never would have foreseen or wanted this scenario, but what can you do?  Make the best out of it, use it for good, and keep on going.

Four years ago, I decided it was time for a change.  I went back to school and pursed my MPA (Masters in Public Administration) and soon afterward, I started my job at JDRF.  In my current position at JDRF as Outreach Manager, I get the opportunity to meet with newly diagnosed Type 1s and offer them important resources and education, community connection, and most of all…hope.  T1D becomes your new normal, but it should absolutely not stop you from living your best life.  Though sometimes it can feel overwhelming to always be encompassed by T1D in both my personal and professional life, I certainly know that I would not be the person I am today without the tenacity living with T1D has given me.  My strongest advice to anyone living with T1D is this – don’t be afraid.  Try new things, investigate devices and glucose monitors that may work for you, dive into diabetes research, build your own T1D community support group, and, educate anyone and everyone around you about T1D!"

 

Diana

 
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Age: 34     Year Diagnosed: 1996    Location: San Francisco, Ca

"Countless times I have been asked “Wow you still use a pager?” Or “oh is that an old iPod? Cool!” And it’s my insulin pump lol. Same with my old Dexcom receiver. I was two hours into a long presentation session in class when my Dexcom started blaring at me that I was dropping. The teacher somehow thought it was a fire alarm (didn’t think it was THAT loud!) and she wanted us all out of the classroom until I said “no no it’s just my pancreas trying to kill me again...” then come see the explanation of what’s wrong etc etc haha I gave my classmates a break but still embarrassing!

When I was about 10 or 11, I LOVED my big sisters baby sitter club book collection. My favorite character was Stacy McGil lol who just so happened to be a diabetic. When I first started feeling sick I ran through all those books again and let my mom know I thought I was diabetic just from the symptoms and experiences described in the books. Lo and behold, a trip to the doctor and a reading of 500+ and into the hospital with t1d I go. I wrote the author on Facebook years later to thank her and she wrote me back glad that her books helped me!"

 

Lauren

 
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Age: 25    Year Diagnosed: 2001    Location: New York City, NY

"My relationship with diabetes runs 18 years deep. Yep. We’ve been Netflix and chillin since I was 7 years old. And like any long term relationship, diabetes and I have been through different phases together. Ages 7-12 my parents were pretty much running the show and I don’t remember much, other then that distinct taste of sugar free jello I was fed at the hospital for 5 days straight. Ages 12-16 is when I began to realize I was “different” and started feeling embarrassed about having to go to the nurse’s office so often and became more aware of the looks and stares coming from kids when i wore my pump clipped on the outside of my pants. Ages 16-21, that embarrassment turned into me feeling like I was not good enough, or perfect enough and i hid my diabetes from most everyone I would meet. Ages 21- present, I learn to embrace what makes me different. I express gratitude for all the strength diabetes has given me. I am so over society’s standards for perfection. And I live a life of holistic wellness, putting my mind, body and soul first, which has immensely impacted me in so many positive ways. Being a Diabetic Health Coach is a career I never saw myself going into, but one I could not love more. I have the privilege of coaching T1D’s all around the world in helping them gain control of their diabetes, their bodies, and ultimately their health and happiness. From barely wanting to associate as a diabetic to making it my life’s focus, I feel like for the first time in my life I am liberated and just living my truth."

Matt

 
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Age: 26   Year Diagnosed: 1992   Location: Los Angeles, Ca

"When I was in high school, I went to visit my brother at the University of Arizona (the school I’d eventually go to). Before dinner we were in his dorm room and one of his friends walked in on me taking an injection. He quickly ran to down the hall to my brother and told him, “Hey dude, I think there is someone taking steroids in your room.

I don’t like that people think you have to be overweight or unhealthy to get diabetes. I tell everyone I know that I’m diabetic and a common response is: 'I would’ve never known.'

I would tell anyone who is newly diagnosed not to be ashamed of having diabetes and definitely not to let it take control of your life. It’s a daily battle and one we all fight. Also, get involved with the diabetic community. It has helped me on countless occasions."

Julie

 
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Age: 45   Year Diagnosed: 1984   Location: Dallas, Tx

"When I was in 8th grade, I was a cheerleader. I tested my bg right before a pep rally and I had a "squirter".. The blood shot all over my white cheerleading shirt 10 minutes before the pep rally! I called my mom and she rushed over a clean shirt!

"I used to be terrified of low blood sugar. I would purposely run my sugar up so it wouldn't go low, and I wouldn't run outside. One day I met a T1D who ran marathons and I was in awe. I started running outside; first just 2 mile loops, so I could pass my car and test every time. Gradually I felt more confident in carrying sugar and my ability to raise my sugar during a run. I ran a full marathon 12 months after meeting that diabetic who inspired me.

Libby

 
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Age: 29   Year Diagnosed:  2005    Location: Brooklyn, NY

"Let your diabetes in to your life. Let your diagnosis become a part of your story. Let your blood sugar testing and pump site changing routine become a part of your daily routine - just like brushing your teeth. Don't give your highs and lows enough power to prevent you from getting up and doing it all over tomorrow. It took me almost 10 years to embrace this disease and allow it to feel a part of who I am. Once I finally realized that diabetes would be sticking around for a while, I stopped fighting AGAINST it, and asked it instead to work WITH me. I literally talk to my diabetes sometimes. I will ask it to cooperate with me when I want to go on a long hike, to stay quiet and calm when I'm about to walk into a meeting, and to give me a break on the tougher days. It's been a transformative experience to stop fearing the worst that diabetes might put me through, and instead look at my diabetes as just another part of who I fundamentally am as a person. This is not to say that everyday I don't fight to outdo what I was capable of yesterday. But I don't waste my energy resenting diabetes anymore. It's simply not worth it. Not to mention, when I made the conscious decision to change the role diabetes played in my life, an entirely new world of opportunity opened up. I found a whole community of people that I had not allowed myself to know or befriend for entirely too long. I had no idea that I had been missing out on the opportunity to share this journey with some of the kindest, strongest, most ambitious, and beautiful people in the world. And now that I have them in my life, I feel so lucky diabetes brought me here."

Roscely

 
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Age: 27   Year Diagnosed: 2010    Location: San Antonio, Tx

"I’ve always been an energetic human being; I was-and still am always up for anything. Even when I’ve had a long, busy day, I wouldn’t say no to doing something. But recently, I’ve come to the realization that it would be totally okay to say no, and say I am tired. I stopped to think how exhausting it really is to have t1d. If I’m completely honest, for the past couple of years, I’ve been so tired. Many would say it is because I am getting older, but I truly don’t think that is why. A lot people don’t understand how tiring it is to have diabetes… but let me tell you, it is extremely tiresome. There have been days when I am super exhausted, and I mention it to someone and they just look at me like “tired of what?,” as if I don’t do enough. And yes, it is kind of frustrating, even for me to not be able to describe why or how exhausted I feel. None of those people ever stop to think how tiring and hard type 1 diabetes can be. I don’t like to play the “I have diabetes” card; but there are some days when I feel it should be allowed. Yes, you see me, you see a happy, positive person. But have you stopped to think how mentally tired I am? How about the emotional roller coaster I go through every single day, to have to think about everything I am about to eat and do at any given time. If I have low or high numbers, enough supplies, or how everything I do, and even the way I feel affects this disease I never intended to have. And that just because I make it look easy, it doesn’t mean that it is.

Jordan

 
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Age: 24    Year Diagnosed: 2005    Location: Dallas, Tx

"I had the unique experience of growing up familiar with Type 1 Diabetes, and I think this has definitely shaped the way that I view this disease. My dad was the marketing director for Medtronic Diabetes from 1998 until three months before I was diagnosed in 2005 at age 12. As a kid, I grew up going to work with him and meeting kids on insulin pumps, I attended the JDRF walk in Los Angeles to help run the Medtronic booth, and I used to pose with infusion sites in our front yard when he needed stock photos. Nicole Johnson was our family friend! So when I complained to my mom about being thirsty and having to pee all the time, she already knew what it was and didn’t let me eat carbs until we saw the pediatrician. My blood sugar was only 230, and I went straight to the endocrinologist’s office, where he gave me a shot, sent me to In-n-Out for a burger, and told me to come back later for outpatient education. At In-n-out, my dad said to me, “this is not a roadblock, it’s just an inconvenience”, and that’s how I’ve viewed it since! I immediately started on an insulin pump and a few months later had taken over managing all of my own care. I was lucky enough to be surrounded by an environment where diabetes didn’t even enter my mind when two years later, at age 14, I asked my dad if we could run a marathon! I have been involved in the diabetes community for years, both formally and informally. I ran a half marathon with Team Children with Diabetes in 2009, and have been a diabetes camp counselor since 2007. My first marathon was at age 14, and I went on run a total of 5 as Head Captain/President of the marathon team in college at USC. Two of my other marathon teammates were also Type 1 Diabetics! And one of my college roommates was diagnosed three months before our freshman year. And our other roommate’s dad was Type 1! Through whatever circumstances I have always been surrounded by others who understood and supported this disease. So it wasn’t until I went to medical school that I realized the magnitude of the impact that this disease can have on your life! At my new medical center I started seeing an endocrinologist that pushed me to get my A1c from the 7% range to the high 5%-low 6%; at the same time I discovered the diabetes online community. With my new perspectives as an early medical professional connecting with others who had not had the same experiences as me, I felt that I was able to better understand how my future patients and peers with T1D view chronic illness. When I saw in 2017 that Beyond Type 1 was recruiting marathon runners, it seemed like a natural fit for me and I signed up without question. What I didn’t expect was being able to witness how transformative this experience would be for my fellow runners with T1D who had not previously felt capable of such a physical feat. I realized that everyone needs a strong community with positive and empowering T1D role models, like I had growing up. This, coupled with a desire to expose my peers in medicine to the practicalities of T1D, is what inspired me to publicly train for my 6th and 7th marathons while talking about diabetes management, exercise, and living your life well not despite disease but because of it. I know I've been lucky in a lot of ways, and I don't pretend to truly know what it is like to feel isolated and controlled by this illness. But it is my hope that by sharing my story and perspectives, I can make someone else's a little brighter."

Don

 
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Age: 56     Year Diagnosed: 1972    Location: Plano, Tx

"I guess I look a bit more "senior" than I feel. This past May I was training to become the first type 1 diabetic to run a 200+ mile relay as a solo runner. I was in Seguin, TX, at a Whataburger, after finishing a 100-mile practice run. I was testing my sugar while I waited in line to order a burger. When I got the order back to my table, I noticed the checker had given me the senior discount. I thought, "I just ran 100 miles and got the senior discount... score!

This past October, I became the first type 1 diabetic and only 3rd runner to finish the 223-mile Capital to Coast Relay as a solo runner (all 223 miles by myself), in 88 hours, 11 minutes, and 27 seconds. This June I hope to become the first ever solo finisher of the 339-mile Relay Iowa, which should take about 8 days. In Spring of 2019, I intend to complete an 880-mile run across Texas, from El Paso to Texarkana; and in 2020 I plan to become only the 2nd type 1 diabetic to run across the continental US. There's a FB page for it, but it's easiest to follow the hashtags #donsolo and #forrestpump!

Type 1 makes a lot of stuff harder, but most of it is not impossible. You get a special sense of pride doing challenging things with "one hand tied behind your back testing your blood sugar."