Jerry

 
 

Age: 58  Year Diagnosed: 1974  Location: Long Beach, CA

 

The Diagnosis
Your food is poison
But there is an antidote
It is poison too

"The total number of marathons I've ran so far is 75. I'm a member of the Marathon Maniacs club, member #361. 

Back in 1974 I was a high school sophomore running with the JV Cross Country team. I had done OK as a freshman, but I was not improving with training that season, I was falling farther and farther behind, getting lost on long runs, losing lots of weight, having to pee all the time, you know...

Finally, my mom took me to the doctor. When he immediately had a diagnosis, I was happy that he knew what was wrong with me. I didn't know what diabetes was.
But my mom started crying.

Anyway, after they told me it was a lifetime thing, and I spent a few days in the hospital learning how to survive with it, they let me keep running.
I've heard others from the same era got exactly the opposite, wrong advice, got steered away from physical activity. I feel really lucky that I got the support I did."

JERRY ALSO RUNS A BLOG WHERE HE SHARES HIS EXPERIENCES AND HIS INCREDIBLE POETRY : http://t1d-runner.blogspot.com/



 

 

 

Amy

 
 

Age: 43  Year Diagnosed: 2000  Location: Pomona, Ca

"I had hid my insulin pump in my bra to dress up.  However, when I went through airport security the metal detector when off.  I had to get wanded by a TSA agent and tell her I had an insulin pump in my bra.

After being on insulin shots for about 6 months, my husband and I hiked Half Dome.  We stopped almost every hour for me to check my blood sugars, and either eat or take insulin depending on what I needed.  Hiking Half Dome gave us hope that our lives were not over just because I had Type 1 diabetes.  Definitely more complicated, but manageable.  

One of the things I am most proud of as a type 1 diabetic is running.  I have run 9 half marathons, two 25K races, and one marathon."

James

 
 

Age: 29 Year Diagnosed: 2006 Location: Los Angeles, Ca

"One drunken night I went into a hot tub fully clothed with my "waterproof" animas pump. Unbeknownst to me until the morning, it went totally haywire and kept continuously triggering random button presses. It was even delivering boluses through the night, but fortunately on the Animas a button press cancels a bolus, otherwise I might not have lived to tell the tale. That was a horrible hangover.

When I was first diagnosed, the doctors and educators kept encouraging me to join T1D support groups, but I thought that was lame. I went years without meeting another type 1 diabetic. Since then I've learned the value of knowing other type 1s. Now I am active in events and meet-ups, and it's opened up a wealth of support and resources. Its also made me fortunate enough to meet many truly wonderful and inspiring people. Projects like yours help people like me realize that we are not alone in this.

Find an endocrinologist who puts you in charge and supports you. Read 'Sugar Surfing' by Stephen Ponder. Get a free lifetime Access Pass for National Parks and Forests. If you're in college sign up with the disabilities center to get priority registration, and use diabetes to get scholarships."

Randall

 
 

Age: 61  Year Diagnosed: 1985  Location: Hamilton, OH

"About a week before my diagnosis, I came down with an ear infection. A couple days later, on Friday September 27, my wife commented that I looked thin. Weighed myself, found my weight down to 150 lb. when it had been 185. So, before class I stopped at student health clinic, where they drew some blood for testing. On October 1, I had just finished a major anatomy midterm when I got word to get to the hospital now. It was there that I learned that my blood sugar from 4 days earlier was in the 800's. My wife got to the hospital, and her first words: "You're proud of yourself that you aced a hard neuro exam when you should have been in a coma, aren't you". Yeah, I was. My classmates all came to see me later. Loved their comment: 'You know how embarrassing this is that all of us are supposed to be some of the best nurses around and not one of us caught this?'

There have been a couple times where it has been so hard that I thought, "I could end it. I can't do this anymore". But then I thought of my two sons. Looking at me and saying, "You are supposed to show me how to be a man, be a dad". So I find new reasons. My son Randy Jr. and I earned Immortal Medals last year for running all the Ragnar Relay races last year. How lucky am I to do something so cool with my son? Every Ragnar I run now, one thought that motivates me is this: How many older than me are out here doing this? How many have an insulin pump attached to them?

This may seem a little corny, but give it your best shot. Don't let it stop you. What my son Jimmy told me once, 'You hate to lose at anything, Dad. But that's a good thing with what you face'."

Brooke

 
 

 Age: 26 Year Diagnosed: 1994 Location: San Diego, Ca

"I think it's funny when people say that I have my life together. Maybe because I married young? Because I have an 8-5 Monday-Friday job? Or because I practice yoga? Or maybe I unknowingly put on this I have my sh*t together façade? Regardless, it's funny to me, because my everyday life is anything but put together. 

Every day is so different, and rarely do things go entirely according to plan. I could refer to it as a constant battle, but I’d rather use the term “adventure.” I guess non-Type 1's don't truly understand what a Diabetic has to remember to do (and what not to do). Every. Single. Day. Just to stay alive. And then throw in the other autoimmune diseases that a lot of us endure in our lives. It becomes a balancing act to say the least. 

In all honesty, my personality is very Type B. I want to be wild and free and careless and eat carbs and drink wine and travel to Africa and sleep with the lions (okay, maybe that last one is pushing it, but you get the picture). That's how I see myself. That has always been me. Very laissez-faire, go with the flow, let it be. But this disease doesn't fully allow you to do that. Sure, you can try to master it — and try your best to be free and careless — but that will most likely only last a few days, tops. And then, WHAM. It kicks you right in the pancreas! 

Being a Type 1 Diabetic doesn't fully allow me to be me, which brings me back to my original point — I don't have my life together! Do any of us, really? Most of the time I'm messy, I don't count my carbs correctly, my hormones are all jacked up, and I don't remember to charge my pump and then have to run home to charge it in the middle of a work day. It's things like that that make me laugh when people perceive me as a together person — because most often, my brain is all over the place!

What I've learned from this disease is that it can hold you back sometimes. However, it can also catapult you into this other realm, where you’re meeting new people that understand what you’re talking about, or are open to learning about it. And those open minds can lead to an understanding that all the imperfect and flawed people of the world can actually be responsible for much of its beauty. "

Taylor

 
 

Age: 25  Year of Diagnosis: 2002  Location: San Diego, Ca

"I had always done various volunteer things with diabetes. I attended diabetes camp as a counselor, mentored newly diagnosed kids, and even completed my final internship for college with the JDRF Atlanta chapter. But after 25 years in Georgia and 14 years of dealing with T1, I decided it was time to start helping people like me. So I packed up my life and me and my D.A.D (Diabetes Alert Dog) Bear, set off for sunny San Diego to come to work at Dexcom! Now I get to help people like me all the time. Every time I talk to a Mom with a child who was JUST diagnosed and I tell them I'm Type 1 and I wear the Dexcom and I'm doing just fine...I know I've made a difference. And that makes it all worth it." 

Rachel

 
 

Age: 21  Year Diagnosed: 2003  Location: Davis, Ca

"Type 1 Diabetes can be difficult to manage, but experience and practice allows handling diabetes to become second nature. I am currently a member of the Women's Basketball team for UC Davis and have balanced diabetes and basketball my whole life.

I've learned that perfect days are hard to come across and unexpected highs and lows are a natural part of having diabetes. In basketball, for example, some days you'll make every shot and other days you'll miss every shot, but you can always practice and make adjustments to minimize the bad days. The same concept applies to diabetes. There will be days that your blood sugars just don't seem to work out, but you can always put more effort into checking and counting carbs on a regular basis to help control your levels.

One thing that has helped me tremendously with managing my blood sugars is recognizing highs and lows and understanding how my body is affected by certain foods and the amount of insulin that I give myself. It's very important that when I am playing during a high-intensity game that I can recognize when my blood sugar may be dropping in order to give myself time to sub out of the game. My athletic trainer always has my blood glucose meter and low snacks ready for me so that I can check back in whenever I'm ready.

While my coaches, athletic trainer, and teammates have been educated on Type 1 Diabetes and the symptoms of low and high blood sugars, there's no person that understands my body better than myself. Because of my experience, I can tell the difference between normal fatigue and a low blood sugar by staying aware of my body and how I am feeling, especially during basketball games. For example, a strong indicator for when my blood sugar is dropping is that my tongue gets slightly numb and tingly and I start sweating more than usual. Small changes such as these make a big difference in noticing blood sugar levels. In addition, I always experiment with different snacks for lows and keep the ones that work best for MY body. I not only need a snack that can get my blood sugar up and stable but also a snack that won't make me feel sick for the rest of the game (I prefer fruit snacks and granola bars).

The most important message that I want to get across is that having diabetes does not limit you. Follow your dreams and understand that having diabetes has made you a stronger person. You've conquered a disease and you can conquer anything else you put your mind to!"

Katrina

 
 

Age: 27Year of Diagnosis: 2001  Location: San Diego, CA

"I was playing in the water at the beach and started to get cold, as I began to exit the water a little girl yelled and pointed "there's an octopus on your leg" to which I immediately felt my body clench up. I slowly looked down on my leg and realized she had mistaken my pump site for a small creature that had attached itself to my leg.

I've always appreciated the T1D community. Being type one has given me the opportunity to come together with other people and support one another in a life altering disease, whether that be at Diabetes Camp, a local JDRF fundraiser or event. While I have been fortunate to continue to maintain a healthy lifestyle with type one the mentality I hold is that we can learn to accept it and work with it, but we do not have to let it run our lives."

Jonathan

 
 

Age: 61  Year Diagnosed: 1957  Location: Palm Desert, CA

"So I have been diabetic for 60 years. With all the technological advances that have occurred for the treatment of diabetes, the management of your diabetes still remains the same. What do I mean by this? The three major components for successful diabetes management are: (1) Understanding your insulin requirements; (2) Realizing that you are an individual and what you put in your mouth affects you only. The effect may be different then other diabetics or even what your physician tells you. Understand the effect food has on your diabetes; (3) Exercise, essential for all aspects of your health, diabetic or not.

With all the technological advances, CGM, glucometers, DNA insulin, etc. Your diabetes care still belongs to YOU, so OWN It!"

Adeline

 
 

Age: 15  Year Diagnosed: 2003  Location: Laguna Beach, Ca

"I feel as though type 1 diabetics are put into the category of "you're unhealthy", which is super untrue. I feel as though it's because of the constant commercials and ads for type 2 diabetics, there's just not enough awareness for us, so when we tell people we have diabetes their mind jumps to type 2. It's funny because I'm constantly told that I don't look diabetic, well what does "looking diabetic" even look like? People are constantly shocked when I tell them, and I feel as though it's such a common misconception about the different types. When it comes to it I'm probably not the only one told "you shouldn't eat that" or "that's sugar, aren't you diabetic?" It gets annoying fast, and it shows that people don't know enough. They mean well, but because people aren't educated enough they mix the two types up. I feel as though if we would have more awareness, people would know more about it. "

 

Sara

 
 

Age: 21  Year Diagnosed: 2001  Location: Pomona, CA

"I have had diabetes basically all my life, and my dad did the best he could do without making me feel like I was different. In high school, I started to neglect my diabetes so badly because I read that Insulin is a fat growth hormone. I would starve myself that would then lead to days of binging. As a diabetic, that would lead to unstable and constant high blood sugars. It got so bad that I would stop wearing my insulin pump for days at a time and not check my blood sugar for weeks. I did not want to have diabetes, so I ignored it. I felt so much pressure to have perfect blood sugars, to lose weight, and still be a teenage girl.

I had a heart to heart with my self when I graduated high school and realized I needed to relearn everything I knew about diabetes and health. I started making friends that were type one, and reading a ton of books and articles. I even took myself off my insulin pump and went back to insulin shots like when I was first diagnosed. It has taken a lot of work to break my bad eating habits, and stop neglecting my diabetes and I am not done yet. I am not perfect and diabetes is the best teacher of that. We all cope with life differently and diabetes is the same exact way.

Recently I changed to diet to be a vegan, it is a slow adjustment for me but I love it. For so long I always told myself I could never be vegetarian/vegan because it is too high carb for my diabetes. Then, I would proceed to eat a whole pint of ice cream and two bowls of cereal, okay, obviously I did not care that much.... I just chose to be ignorant. I have only been vegan for 2 weeks now and I can already see the benefits with my diabetes. I get most of my protein from beans and high fiber vegetables which is beautiful for regulating blood sugars! It has taken me years to learn that food is such a powerful tool and eating healthy does not mean salads and starvation. Food for me is nutritious and a lively, and it should not be something to fear.

Not every journey is the same! Some people are diagnosed at 30 and adjust quickly and for some it is not that easy. My piece of advice is join the type 1 community, whatever that means for you. I made an Instagram and followed hundreds of accounts and messaged practically everyone.

The doctor is great for helping with A1Cs and taking tests, but they are not with you everyday telling you to take your insulin or to eat right. I feel less alone knowing that many other people out there with type 1 are living normal lives with similar highs and lows. "

Christina

 
 

Age: 21  Year Diagnosed: 2007  Location: Boston, MA

"I once woke up to the sound of my Omnipod beeping, signaling that its insulin vial was empty. I tried to get the beeping to stop by pushing the "Change Pod" button on the device, but after 10 minutes it was still going (and loudly beeping, too). So, I pulled it off my hip, walked downstairs, went onto my balcony, where I have good aim to the trash bins in the side yard, and I threw it across the yard and it landed in the trash bins. Hours later when I finally woke up to go to class, when walked out my front door I could hear that it was still beeping. The next day when I got home it was STILL beeping. I honestly don't think it ever stopped and we could hear it outside the house until the day the trash got picked up.

Your glucose numbers are not a reflection of you. Your A1C is not a grade, and it's important to be wary of not basing your self worth on your glucose numbers. You're going to have bad days and you should be gentle with yourself and patient. You don't get a break from type 1 diabetes, so it's okay sometimes to play hooky from life and take care of yourself. "

Courtney

 
 

Age: 36  Year Diagnosed: 2008  Location: Los Angeles, CA

"I had no idea it was possible to be diagnosed with Type 1 Diabetes as an adult, and unfortunately, neither did my doctor at the time. I was started on medication for Type 2 Diabetes, despite weighing 100 lbs and having no family history of the disease, solely because of my age. My health was rapidly deteriorating, and after hours on the internet, I realized I had LADA (Latent Autoimmune Diabetes in Adults) and was able to get an appointment with Dr. Anne Peters and Donna Miller at the USC Westside Center for Diabetes. They started me on insulin immediately, and my diagnosis was soon confirmed through antibody testing. I was grateful to finally have an answer, but it was a really strange and lonely time. All of the resources and support groups for newly diagnosed Type 1’s were for kids, teens, and their parents. My first Novolog pen was decorated with balloons, and the medical alert bracelets were all designed for little girls. I was working in the entertainment industry at the time, and I quickly began to lose interest and any sense of purpose in my life. It felt like nothing fit. With therapy and the support of family, friends, and medical professionals, I eventually adapted and went on to get married, earn a Master’s degree in counseling, buy and remodel a house, and give birth to two healthy and beautiful baby boys. I used to have a lot of angst about having to mourn the loss of good health in the prime of my young adulthood, but now I’m so grateful for it. It streamlined my priorities and helped me manifest things I previously wasn’t even sure I wanted, but that are now my greatest joys (like being a mom!). I no longer feel betrayed by my body and have a renewed sense of love and appreciation for it. I know it’s tempting for type 1’s to expend a lot of energy proving to themselves and the world that they can accomplish anything non-diabetics can, and that’s true and inspiring, but my biggest piece of advice is to be gentle with yourself- you are doing the work of a divinely designed organ! It’s okay to not be “on” all the time. Prioritize your health- BG control, healthy eating, sleep, exercise, and stress relief are all critical, but don’t forget to have FUN!"

Madison

 
 

Age: 5 Year Diagnosed: 2016 Location: Camarillo, CA

"It's funny how the big kids are afraid of the blood on my finger; but it's really no big deal. My friends think it's really scary but I'm really brave.

I don't want the scientists to forget about me. I don't want to have diabetes forever.

My piece of advice is that everything will be ok and don't be afraid. There are other people in the world that have diabetes and you will get to meet them and make new friends. You aren't by yourself."

Best piece of advice from Madison's mother: "My 5 year old daughter will constantly ask me, "What am I?" in reference to her blood glucose numbers. I always answer, 'a beautiful girl, sweet girl, smart girl, blonde haired/blue eye angel', anything but the number itself. I don't want her to think that she "is" diabetes and that there is so much more to her than her diagnosis. Always try to acknowledge the child first (not diabetes)! When you come home from work ask them about school, sports or friends first and then get to the other stuff."

Jim

 
 

Age: 68  Year Diagnosed: 1978  Location: Los Angeles, Ca

"Actually, I don't think there's much funny about being diabetic. That said, I remember one time when I was trying out a new insulin pump system and the pod alarm started shrieking for no apparent reason. No matter what I tried, I couldn't shut it off. I finally took it out to the garage and whaled on it with a hammer until it stopped! I'm rarely embarrassed about my condition; my wife, friends, and family have always been very understanding and supportive. I mostly just get aggravated and annoyed when, say, the tubing of my insulin pump catches on a doorknob or drawer pull. Or when, before going on the pump, I had to excuse myself from a restaurant table to test and inject. I just loved 'shooting up in strange bathrooms.'

I had a long corporate career. Now, along with being a poet and publisher, I present literary events. My biggest worry is that my blood sugar will drop on me suddenly when I'm at the podium. It's only happened once and I was able to deal with it. But I generally let my blood sugar go a bit high prior to an event or when reading my work in public.

Everything diabetic-related is a guessing game, a balancing act, and a crap shoot as to whether you've counted carbs correctly, or factored in the myriad elements of daily living that can affect blood sugar levels. Our goal is always to be as well-controlled as possible, but you're just not going to get it right all of the time. Learn to just roll with the inevitable highs and lows and live your life to the fullest, within diabetic reason."

Lee

 
 

Age: 7  Year Diagnosed: 2015  Location: Los Angeles, Ca

"Many people think that having diabetes is scary. They think having to poke yourself every day would really hurt. I want to tell them "it doesn't even hurt that much guys!"

My thought is I really hope they find a cure for diabetes. I am always wondering when they will find a cure and how they will find a cure.

If I met a newly diagnosed diabetic who did shots, I would tell them "Don't worry, in 2 seconds it will be over. The way it looks is much scarier than how it feels."

Best piece of advice from Lee's mother: "Find a community of parents who can understand the challenges you face. I have leaned on my fellow T1D moms for support and advise so many times. Having that person you can reach out to 24 hours a day to vent, cry, laugh and connect with is SO important."

Robby

 
 

 Age: 28 Year Diagnosed: 2002 Location: Santa Monica, CA

“I was diagnosed with type 1 diabetes on January 26th, 2002. In December of 2006 I started eating a low-fat, plant-based, whole-food diet and it’s changed my life in countless ways. I want every person living with type 1 diabetes to understand the importance of insulin sensitivity. Our community does not talk about it enough. The #1 killer of all type 1’s is heart disease. Insulin resistance is major risk factor for heart disease. A low-fat, plant-based, whole-food diet reverses insulin resistance. If you are reading this and you inject insulin, I encourage you to calculate your 24 hour insulin sensitivity factor. Take your total carb intake and divide that by your total insulin intake. If it’s less then 10:1, there is room for improvement. Let’s all support each other in being as healthy as possible. If it wasn’t for my type 1 diagnosis, I don’t think I would have been motivated to work on my health and would probably have other health problems. I’m grateful for type 1 and the person I have become because of the lessons that this condition has taught me.”

Ella

 
 

Age: 8  Year Diagnosed: 2016  Location: Los Angeles, Ca

"Kindergarteners at school think my pump is a video game!

I want to share about how much I love Camp Conrad Chinnock and how it is so important to find a dia-bestie!"

Best piece of advice from Ella's mom: "Find your mom-tribe. It can be very isolating and scary as a newly diagnosed parent. Having other parents to talk to, laugh, cry and complain with helps immensely!"
 

Marci

 
 

Age: 25  Year Diagnosed: 2012  Location: Riverside, Ca

"I am 25 years old and living life as a newlywed with my husband of 6 months, Matt, in sunny SoCal. Back in 2012, I was living in Malibu, CA in the beach city of my dreams just one semester into a master’s program at Pepperdine. About halfway into the semester, my health began to quickly deteriorate and each day I felt like I was becoming weaker and weaker. Growing up, I thrived in school and was at the top of my class. Suddenly, I found it difficult to study or even make it to class. My concentration and focus in the classroom became an issue and I recall one time turning in a blank exam because I couldn’t stop my head from spinning. For the next few months, I experienced all the symptoms you’d expect from undiagnosed diabetes- weight loss, chronic fatigue, weakness, excessive thirst, frequent urination, and so on. After finals, I went home for the holidays and was diagnosed just 4 days before Christmas.

I’ve learned so much in the past 4 years. My journey with T1D has made me realize that I could very well accomplish all the same goals in life—with or without T1D. The only difference is that I have to manually control my non-existent pancreas with a little extra work and effort. Instead of viewing T1D as a setback, I’ve learned to embrace the challenge. Instead of pitying myself or subconsciously convincing myself that I was forever “sick,” I decided that I was not going to view T1D as a thorn in my side. I’ve committed myself to studying T1D inside and out and learning ways to enhance my quality of life and diabetes management. My passion is to shatter the stereotypes, confusion, and stigma associated with T1D and living with a chronic illness. In the past four years, I’ve traveled the world, studied abroad in Europe, graduated with my Master’s degree in Global Business, established a solid career, and recently married the love of my life — all while learning how to navigate and outsmart T1D. The best part is that I have a solid support system to run alongside this journey with me. My dad and 2 siblings are also Type 1 Diabetics, who all have a different story. We are bonded by faith and by fight.  My commitment to myself and to the T1D community is to continue to make each day better and help others maximize optimal health, confidence and a life filled with purpose and meaning."

Stephanie

 
 

Age: 27  Year Diagnosed: 2001  Location: Modesto, Ca

"The day my endocrinologist told me she saw no reason why I couldn't have a perfectly, healthy, and NORMAL pregnancy may have been one of the happiest of my life. I remember immediately calling my mom crying to tell her the news. When I was first diagnosed, I was always told that either A) I couldn't get pregnant or B) If I wanted to get pregnant, I'd have to jump through hoops to find a doctor that would maybe be willing to work with me and that I would have an extremely difficult pregnancy. With the help of my insulin pump, continuous blood glucose monitor, and my endocrinologist, who I see every 5-6 weeks, I've been the healthiest I've been in my entire life. To be honest, I never thought that I could actually do it and actually get my diabetes in check the way it is now. I am so thankful to my entire team for helping me get to where I am now! We're so excited to welcome our healthy baby boy by end of February!

Just check yourself. Seriously. I had the hardest time getting my management in check throughout high school and college just because I didn't want to see that "bad" number on my meter. But who cares? No number is a bad number... Except for the one you can't fix because you don't know what it is!"