Reny

 
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Age: 28  Year Diagnosed: 1991   Location: Los Angeles, Ca

"I was a competitive diver in high school and college and used to wear the Deltec Cosmo water proof pump (waaaaaay before anything like Omnipod existed).  Most practices, I would disconnect and leave my pump in my gym bag and reconnect every so often to replace my basal.  I had one practice that I walked into with a high blood sugar and felt like poop.  I decided to keep my pump on for practice so I wouldn't miss a drop of insulin.  I went up to the board to start practicing a new dive that involved somersaulting and twisting.  The minute I was in the air, I started twisting one direction and my pump went the other.  I hit the water wound up in my own tubing and completely botched the dive (really, I was forever bad at this dive, pump problems or not).  I quickly gave up diving with my pump and stuck with taking more breaks to bolus. 

I wish people understood how strong living with Type 1 Diabetes makes you, not how sick.  Growing up with this disease, I've had my fair share of sick days and close calls, but I would never in a million years label myself as a "sick kid".  I was a happy, curious, energetic youngster that learned how to plan for every situation, make lemonade out of some outrageous lemons, and be self-reliant. Looking back, diabetes has taught me important life skills that has helped shape the person I am today.

The greatest lesson I've learned so far on my journey with type 1 was from my camp doctor, Dr. Mary Simon.  There is no such thing as a "good" or "bad" blood sugar number.  Checking your glucose is not a test, you cannot get a pass or fail grade.  They are simply numbers, data points to help you navigate this really unpredictable disease.  The only type of "good" data you can have, is lots of data! Don't be afraid to check because of the number that will show up on the screen.  Know that you're doing awesome just by checking it."

 

Kasey

 
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Age: 22  Year Diagnosed: 1998 Location: Camarillo, Ca

"I like to say that my body has a vendetta against me. I've had diabetes for 18 years now and it is definitely acting like a spoiled young adult. I have tons of scar tissue on my belly, Hashimoto's thyroiditis as a comorbid illness, and additional medications for insulin resistance. I am a very, very tired 22 year old. Most of my high school and college years are marked by uncontrolled numbers in the 300s and feeling like my body is its own entity and completely out of my control to handle. I felt lost and hated myself for it. I'm only now really trying to take back control of myself, and it is extremely difficult. I want people to know that just because an illness is commonly referred to as "manageable," does not mean it is not difficult, aggravating, and frankly, incredibly dangerous. Think about it- a hormone you take too much of, you can die, and you take too little, you can die. On the flip side, I'm lucky I've met wonderful diabetics in my day at camp and at school, and they give me hope that one day I'll be able to go weeks without feeling like my body is revolting against me."

Ryan

 
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Age: 28  Year Diagnosed: 1995 Location: East Hollywood, Ca

"I was diagnosed with type 1 diabetes on my sixth birthday. Some might say that's the worst birthday present of all time. Truth be told, they wouldn't necessarily be wrong. This disease is not fun. The roller coaster ride of life can be hard enough, and diabetes has a way of adding extra loops and corkscrews which make it nauseatingly difficult to bounce back from. To be clear: I hate having to make myself bleed multiple times a day; I hate having to constantly be aware of the carbohydrate content of everything that I eat; I hate the semi-bionic nature of my existence as I'm tethered to a machine that people consistently mistake for a pager (because we're still in the 90s?). But most of all, I hate the feeling of not being in full control of my life when I have to put it all on hold because my blood sugar is either too high or too low to function. And yet, despite how negatively I can feel about all of it, I can honestly say that type 1 diabetes has been, in its own twisted way, the best birthday present I've ever received. If I wasn't type 1 diabetic my life would be a much emptier place. I would never have ever known about Camp Conrad-Chinnock, where the community and network of lifelong friendships I've made with fellow type 1 diabetics continues to define me incalculably. If my pancreas worked like it ought to, I would never have received preferential treatment in surprisingly awesome ways throughout my life (i.e. getting all my textbooks paid for through a handicapped students program during college was extremely helpful). And if I was never insulin dependent I would never have known myself as much as I do. Diabetes is a condition that makes one feel, often in excess and to exhaustion. But it has been through that depth of feeling that I was able to forge my creativity, my passion, and my sense of humor. In my life as an aspiring so and so in this town I am told those qualities will get me far; as a human being living life day by day they've shown me that this struggle is, in fact, a strength.

 

Erica

 
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Age: 32 Year Diagnosed: 2005 Location: Century City, Ca

"Why don't you hide your meter and insulin pen during lunch?"  I was once asked.  Hurt, offended and misunderstood are only three of the ways I felt in that moment.  I know many of you have felt the same, and likely more than once.  We are not defined by diabetes.  As someone once told me, "Diabetes is not a disease or a disability.  It's a condition you adjust to your life."  Yes, it is a part of who we are and it may or may not be forever, but until then, I know I will not hide it. I will educate those that are ignorant about it and I will tell my story and tell it proudly.  Those that will choose to turn away from us because of it should not be in our lives to begin with.  I will fight ignorance and I will continue to prove that sky is the limit to what we can accomplish.  Stand with me. "

Alexi

 
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Age: 28 Year Diagnosed: 2003 Location: Berkeley, Ca

"The VERY first time I tried traveling with a pump, (this was a pump model that will remain nameless), but about thirty minutes after takeoff it completely malfunctioned on me. I had been hesitant to get on the pump in the first place, and this absolutely threw me over the edge. I had to switch back to insulin pens on that six-hour flight from San Francisco to New York, and I swore I would never try another pump again. About a year later though, I met my best friend -- the OmniPod. It just goes to show that T1D takes a LOT of trial & error to find your own personal groove. Diabetes management is a very personal and unique experience for all of us.

At this point in my life, I can truly say that I am confident that my diagnosis happened for a reason. At least that's what I believe, and I hope I can impart that as best as I can. Growing up, I always believed I would be an actress. I wanted to inspire people, and I thought that being in front of the camera was how I was supposed to do that. So I kept trying to do it, but I continuously hit these brick walls. It wasn't in the cards, and I simply couldn't figure out why. One day, 14 years into my life with Type 1 diabetes, I found KNOW Foods. Low-carb, gluten-free, wheat-free, and non-gmo bread alternatives that did NOT spike my blood sugar and made me feel healthier than I had ever felt. Although volunteering with Type 1 nonprofits such as JDRF and Beyond Type 1 allowed me to connect to other people with T1D in wonderful ways, I knew that getting involved with this food company was something I was destined for. Soon enough, I was hired by CEO/Founder, Steve Hanley, as their new Senior Director of Alliances. I am now able to secure partnerships between KNOW Foods and nonprofit organizations and individuals who we feel will benefit from our products, as well as showcase WHY we do what we do. This time of my life is the most fulfilling time to date. My Type 1 diabetes diagnosis took a while to show me why it had to be this way -- but I am so glad that I was patient, because now I understand."

Ashley

 
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Age: 28  Year Diagnosed: 2017 Location: Toluca Lake, Ca

"Being diagnosed with Type 1 in your 20s is tough. Adults don't have the same amount of support as T1D children. We don't have our parents to take care of us, to remind us to check our BG, or to save our life in the middle of the night from going too low. We don't have fun camps to attend or the same amount of support groups. I remember feeling so alone while lying in the ICU at night after my diagnosis. I didn't know a SOUL with diabetes, but I didn't let that get me down. I dove right into the Type 1 community by joining organizations and meet up groups in order to make T1D friends and learn everything I could. This would ultimately lead to my new career working for the diabetes fashion company, Myabetic just 3 months after my diagnosis!

Clare

 
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Age: 24 Year Diagnosed: 1997 Location: Orange County, Ca

"For a long time, I struggled with the fact that I have a disease with the ability to kill me. I didn't want to believe I could die so easily. I didn't want to believe I could go blind. I didn't want to believe I could lose a limb, or fall victim to nerve and kidney damage. So I rejected it. I refused to take my insulin and hardly ever tested myself. The times I decided to check myself, my blood sugars were higher than a kite, and I constantly suffered from headaches. I regularly skipped my insulin intakes. I thought that maybe, just maybe, it would go away if I ignored it. My diagnosis made me feel depressed. I hated that I was different. I felt like I had nothing to live for, that diabetes was just going to kill me anyways, so I might as well let it.

A short while later, I visited the doctor again, but something about that appointment felt different. My results were less than ideal; my A1C results came back at 13, and then something clicked. I realized I would no longer let diabetes control my life. I decided to take control and understood how much life I still needed to live. From that moment on, I swore to take care of myself and keep a positive outlook. I buckled down, monitored my blood sugars and kept up with my insulin intakes. By the next doctor’s appointment, I brought my A1C down from 13 to 8.5, feeling more like positive Pete than negative Nancy.

Despite my struggle with diabetes throughout my child and adolescent years, I wouldn’t wish my life any different. Diabetes taught me to be a better person; how to harness my inner strength and see both the beauty and importance of life, no matter the situation. Without diabetes, I wouldn’t have learned, from an early age, the effects different food have on our bodies. I wouldn't know what it feels like to be so low that you feel like you're having an out of body experience, or so high that you are being a bit too grumpy from your blood sugar being off. I always believed diabetes would hold me back for the rest of my life, but now I can’t imagine my life without it. Diabetes is about resilience, strength, and self-acceptance. It won't hold you down, rather, help you get back up. It’s about bouncing back when your blood sugar is too high or too low. It’s about overcoming the any challenge life throws at you. Diabetes is what empowered me, to be me."

 

Charlie

 
 

Age: 25 Year Diagnosed: 2009 Location: Seal Beach, Ca

"Ironically, l worked in a candy store at the time I was diagnosed. I found myself sampling the inventory with more trepidation, after my diagnosis, worried that eventually I’d be cut-off entirely. I look back on these past 8 years as a T1D, which happens to include my senior year of high school, college, a few international adventures and my initial years in my professional career – and I think I’ve overlooked my chronic disease. I’m meticulous when it comes to planning and packing for the unexpected, especially as a diabetic-on-the-move. I have explored caves in Mount Shasta, CA and been stuck in a blizzard at the top of the Tatra Mountains in Zakapone, Poland and I was never without what I needed. As a diabetic, I am always thinking 3 moves ahead. But now I’m trying to be more educated in the science of what it means to be a Type One Diabetic and more involved with the hourly responsibilities. I still want to plan for the unexpected, but, also more importantly, be in a mindset to avoid it."

Gal

 
 

Age: 25 Year Diagnosed: 2016 Location: Los Angeles, Ca

"I was in Thailand for what was supposed to be a 2-month summer long vacation when I suddenly started feeling awful. I remember every day crossing my fingers as I woke up hoping I’d feel better when I got out of bed. But nope, it only got worse and worse. The thirst, the urination, the heavy breathing, and weakness. I remember hearing people next to me at one point, speaking in Hebrew about me- "Why is that girl breathing like that?". My friend was telling me I wasn’t being myself and I realized she was right, all I wanted to do was sleep.

Doctors there misdiagnosed me with “pelvic abdominal infection”, and cleared me to leave the hospital with some pills to take with me- no blood test, nothing. On my 9th day or so, my parents were worried about everything I’d been telling them I was feeling. They told me they heard in my voice that something was off. I sounded lethargic and aloof.

My dad booked me a flight home at that very second. I was SO confused. I had a 20 Kilo travel backpack with me and had never felt so weak. I had no clue how to get from this tiny Island, to another tiny Island, to Bangkok, to a layover in Tokyo, and finally back to Los Angeles. Oh and did I mention I was completely alone for all of this? I remember being too weak to carry my small purse at this point, or even my phone. I was wheel-chaired around the airport in Bangkok and Tokyo.

During my layover in Tokyo I realized I hadn’t eaten in over 48 hours. I remember thinking that I’ll die if I don’t eat soon and that the only thing i could tolerate was orange soda. So I chugged that which I later realized was the worst possible thing I could’ve done! Yay me! When I finally got back on the plane for the final stop (Los Angeles), the symptoms got significantly worse. I had a 12 hour flight ahead of me and literally felt like I couldn’t breath, couldn't stand up, and could hardly move.

I remember the flight attendants giving me the oxygen tank and telling me to breath it in "slowly", because I was breathing so rapidly? Makes no sense in retrospect because I was in fact producing too much oxygen.

The last thing I remember on this flight was being in excruciating pain. Every muscle in my body was aching. I was moaning in an effort to fall asleep. When I finally “fell asleep” there were about 4 hours left on the flight which I don't remember whatsoever. I then apparently went in a coma. Other than the small flash back on the ambulance, the next thing i remember is waking up in the ICU at the hospital in DKA and left the hospital as a Type 1. I am SO grateful and lucky to be alive!"

Poli

 
 

Age: 26  Year Diagnosed: 2007  Location: Los Angeles, Ca

"I have a funny, diabetic, life on the road in a band, story. So on tour we mostly live like trash and our van pretty much looks like the snack aisle in 7 11 exploded in there. So there's tons of snacks, and open bags of chips, empty beer bottles and other unmentionables. Well if you're a diabetic you know the 'Hansel and Gretel' bread crumb test strip life we live, no matter how hard you try, test strips find their way EVERYWHERE, especially in our van. My best friend (and the guitar player in the band) was driving the bandwagon and was munching on a bag of chips only to then realize that one chip she was chewing was not a chip! She spit out a used test strip of mine! It was gross and hilarious, and I kinda felt bad but also like, 'Close your chip bags people.'

I used to avoid everything that had to do with diabetes in any social situation. I didn't want to make a big deal or explain the whole shebang and felt embarrassed. That's so dumb! It's super duper dumb. Because once i got a little older, I realized myself what a huge battle I fight everyday and how life threatening it can be. Be open, explain it! It can save your life and your peers will be interested in hearing all your details, I promise! Also, theres gonna be those days, when you are like "really? This is what I have to deal with forever?" Yep, yes you do, and you got it. My rule is it's totally ok to have "Feel sorry for yourself moments" rock em, eat crappy food, do a fat shot of insulin, cry and move forward. We got this!"

 

 

Sal

 
 

Age: 29 Year Diagnosed: 2007 Location: Fresno, Ca

“Since Type 1 Diabetes doesn’t have very many physical characteristics, other than an insulin pump, a CGM, and/or calloused fingers, people think everything is fine all of the time. I wish I could let more non-Type 1 Diabetics know what one goes through, emotionally and physically, when having a hypoglycemic episode or what the effects of hyperglycemia are. How they could recognize a high or a low; how they could be of assistance in any of these cases. 

Number 1 piece of advice to newly diagnosed T1 Diabetics: YOU ARE NOT ALONE! Reach out to others; ask for advice; don’t be afraid to ask any question (no matter how silly you may think it to be). When I was first diagnosed, I tried to ignore my diagnosis; I thought that if I just slept more when I was tired, I would be fine. That mindset led to multiple, life-threatening visits to the ER with both lows and highs. It wasn’t easy to start talking about what I was feeling, but doing so has helped me be more aware of my symptoms. And I have also made great friends whom I can talk to about what I’m feeling, and I know that they understand; that in itself makes a T1 journey a lot more manageable.”

Jana

 
 

Age: 45Year Diagnosed: 1974Location: Ljubljana, Slovenia

(Translated from Slovenian to English)

“It was the year 1974. Due to constant thirst and frequent urination, my mother took me to the pediatric clinic where my blood sugar was measured 40+ mmol. I still remember the stairs in the pediatric clinic, where I could no longer walk. I stopped before them and said, ‘Mom, my legs hurt me, do you mind carrying me?’ My mom picked me up and took me up the stairs to the emergency room. My mother asked the dcotors what she should do about her baby, but they told her they didn’t even think I would survive through the night. 

After six weeks I came home, and my life started over. Insulin doses were determined based on the amount of blood sugar measured in the urine with the aid of Clinitest tablets. Insulin was administered with glass injections and large needles in the morning. Each morning, it was necessary to boil the needles and test tubes. 

Now, I’ve been on an insulin pump for the past eight years, which I am extremely grateful for. With the pump, my life is easier, and I can enjoy life as much as possible and live it to the fullest. I've always been different and always something special, and I will stay with my loyal hip friend (my pump, that keeps me healthy!"

Stevie

 
 

Age: 26  Year Diagnosed: 1990  Location: Costa Mesa, Ca

"Here's my favorite: When I was in elementary school, I got in trouble on the playground for calling a girl "stupid". When I was taken to the principal's office, he asked me why I called this little girl stupid. My response was, "Sometimes when my blood sugar goes low, I say things I don't mean!" My blood sugar was fine that day, and not much has changed regarding my perspective on girls...

Having diabetes as long as I have has been a challenge, however looking back as an adult I can clearly see the person that it has helped me become. A little over cautious at times, but generally appreciative of the little things that many people may forget to appreciate on a daily basis. Like a little magical substance called ice cream. I always tell myself, if I'm ever cured, the VERY first thing I will do is eat an entire gallon container of cookie dough ice cream.

You can do everything that someone without diabetes can do, and even more! I can play guitar better than most people, and I can also kick some major butt on the tennis court. Also, when it comes to dating, and meeting new people, never be ashamed or embarrassed of your condition. I wear my CGM on my arm for everyone to see, and tons of people are curious and I am happy to explain it. OWN IT!"

Shiloh

 
 

Age: 5  Diagnosed: 2014  Location: Beverly Hills, Ca

(In the words of her mother):  Shiloh says, "T1d hurts sometimes, but it makes me stronger."  She honestly doesn't complain about having T1d, she's neither proud nor ashamed of it.  She doesn't remember life without it, and everyone she's ever met with t1d is brilliant, healthy, and high-achieving.  So at least for now, her view is simple.

As Shiloh's mom, I wish people wouldn't frown or say, "I'm so sorry," when I share that Shiloh is type 1 diabetic."

Best piece of advice: "Connect with other T1ds as much as possible, in person and through social media.  Choose to see T1d as a challenge, not an illness, and look for the hidden blessings and the opportunity for growth.  Also, get a Freestyle Libre, a wonderful device for measuring blood glucose levels (not available in the U.S., but easy to acquire online from multiple reliable sources in Europe.)"

Kim

 
 

Age: 36  Year Diagnosed: 2002  Location: La Crescenta, Ca

"When I was first diagnosed and sitting in my hospital bed, I thought of the movie "Steel Magnolias," and was scared that I would never be able to have children. Almost 15 years and three healthy and beautiful children later, I have learned that with determination and effort you are not limited in what you can do, even with Type 1 Diabetes and other autoimmune diseases.

It is important to remember that you are a person with diabetes, and that diabetes is not the only identifying feature of who you are. For me, I've found it helpful to not give power to the illness, but to address it as a task and then move on to my next activity. Diabetes can be a frustrating illness, but you can still do and be all that you want.

Connie

 
 

Age: 41  Year Diagnosed: 2013  Location: Los Angeles

"I was at a neighborhood bar and walked into the restroom to inject and a woman, standing at the hand washing sink, was watching me through the reflection in the mirror. She proceeded to say to me, “wow, you have no shame.” I just stared at her and said, “no, I don’t.” When I was back at my seat, I noticed she kept looking at me and I began to wonder if she really thought I was getting high and was waiting for me to behave a certain way. I did consider acting erratically just to trip her out but I was too busy enjoying my cocktail! Needless to say, I no longer go to the bathroom to inject. I do it, shamelessly, anywhere!

A common misconception I wish I could change is that type 1 diabetes is not only developed in infancy/childhood. Many adults develop type 1 but are misdiagnosed as type 2 as was my case and as was my brother's case. My brother was diagnosed with type 2 in his 20s because he was overweight and had an unhealthy diet so the doctors assumed it was type 2. He was unable to maintain control of the disease because he was being treated for the wrong disease and in the long run, he was damaging his vital organs. It wasn't until about 10 years after his initial diagnosis when he met a knowledgeable endocrinologist that retested him and the results concluded he was indeed type 1, proper treatment followed. Whenever I hear misconceptions of diabetes, I take it as an opportunity to educate others.

In April of 2013, I was religiously attending Zumba classes in hopes of losing weight for my 20th high school reunion. By May, I had lost a significant amount of weight, which was wonderful, but I had also developed an insatiable thirst and my frequent urination was alarming but I associated it all with Zumba. Of course I was losing weight, I was dancing my butt off! Of course I was thirsty, I was dehydrated from Zumba! Of course I was urinating so much, I was drinking a lot of water! By June, my vision got blurry and I just assumed it was because I was pushing 40 so I purchased my very first pair of prescription glasses.

By July, I was sick, I was tired, I was sick and tired of being thirsty, sick and tired of my frequent urination, and sick and tired of losing weight so fast that my clothes no longer fit. I knew I had diabetes, I knew the symptoms all too well. My grandmother died of complications of type 2, my mom and brother have diabetes but I was just in denial. On July 5, 2013, I checked my fasting blood glucose with my mom's meter and my sugar read 275 and I was devastated. That Monday, my doctor diagnosed me with type 2 diabetes and sent me home with a prescription of Metformin that never worked and I began to have panic attacks. By mid-week, my doctor called me to inform me that I had been misdiagnosed. I had tested positive for antibodies and my c-peptide was low, I was type 1 diabetic and I needed to go into the nurses station for insulin and so my multiple daily injections began."

Sophia

 
 

Age: 16  Year Diagnosed: 2011 Location: Camarillo, Ca

"About two years ago, when 14 I was having a loud conversation with a friend discussing my 'pump'. I am so used to abbreviating the term insulin pump that I didn't think anything of it. The man listened into our entire conversation yet somehow neglected to understand that I was talking about diabetes. Finally as I got up to leave he asked me if I was a breastfeeding mother. He was really kind and offered to give me his pastors number but it was completely misguided. It was extremely funny in the moment.

I wish I could emphasize to people that type 1 diabetes is essentially uncontrollable. Regardless of my diet I will still need insulin!! There is a huge difference between type one diabetes and type two. My pancreas will not be rejuvenated by vitamins."

Anthony

 
 

Age: 26 Year Diagnosed: 2000 Location: Corona, Ca

"A thought I'd like to share with you and also other diabetics is to live life to the fullest and don't let any thought of this fight slow you down. You're a warrior and the strongest person around. Even if others think differently,  just know nothing will stop me from any of my goals."

Emma

 
 

Age: 25 Year Diagnosed: 1999 Location: Bristol, UK

"A few months ago, I hit the 18 year milestone of having type 1 diabetes. After dealing with a disease for such a great portion of my life, I thought I knew all the curves and corners of how I perceived myself in my disease. This changed when I began working for an organization that provides essential diabetes supplies to young people who live in low-resourced countries.

Sometimes a change in perspective is all it takes to put you in the driver's seat of your life. For me, it was seeing first-hand how a lack of access to basic and essential diabetes supplies can disrupt the lives of young people with diabetes. But also, seeing the beauty of resilience manifest in young people with diabetes and their families in the most trying of times.

I keep learning life-changing lessons throughout my diabetes even 18 years on. This year I learned how to channel my gratitude for the technology I have access to by caring for myself and continuing to advocate that everyone in the globe has the right to live a good life with diabetes. "

Julie

 
 

Age: 52  Year Diagnosed: 1991  Location: Maitland, Fl

"After a back surgery I developed blood clots in my leg and had to be hospitalized. While in the hospital a nurse asked me to give her my pump. I asked "why ?" She said she would take care of my diabetes for me. I told her "no thanks...it's really not a good thing for me to go without". Seriously. Even health care professionals don't get it sometimes.

26 years of diabetes. So far 25 marathons with number 26 on the horizon this year. Continually learning about myself and diabetes management through all of these marathons!

It's life changing. But it can be a very positive life changing event too. Embrace it with everything you have. (Easier said than done many times!)"