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!)"

Roman

 
 

Age: 47  Year Diagnosed: 1985  Location: Kranj, Slovenia

"I was always afraid of needles - so much so, that every time I was vaccinated, I would pass out. When I was diagnosed at age 15 and the doctor explained that I would have to get injections everyday, and not only that - I would have to give them myself - I thought that she was joking. No way was I going to prick myself. But some 50 thousand given injections later, I can tell you how wrong I was...

I never complain about diabetes. I'm never asking myself, 'why me?', because that's not constructive. It will solve nothing, it will just put you in a bad mood. I just take care of my diabetes as best as I can. As simple as that

Although I think that you should always strive to have a good sugar values, you should be happy if you achieve that goal most of the time. It's hard to be 100% perfect so why be sad over that? Just be happy with what you achieved.."

 

"Zmeraj sem se bal igel - in to toliko, da sem ob vsakem cepljenju zaradi strahu padel v nezavest. Ko sem pri 15 letih dobil diagnozo diabetesa in mi je zdravnica razložila, da ne samo, da bom dobival injekcije vsak dan, ampak, da si jih bom dajal sam, sem čisto zares mislil, da se šali. Niti slučajno se namreč nisem mislil sam špikati. No, po kakih 50000 injekcijah vam lahko povem, kako sem se motil...

Nikoli se ne pritožujem zaradi diabetesa. Nikoli se ne sprašujem, zakaj ravno jaz, ker je to nekonstruktivno. Rešilo ne bo nič, samo v slabo voljo te lahko spravi. Jaz samo skrbim za nivo sladkorja po svojih najboljših močeh. Enostavno

Čeprav mislim, da si moraš stalno prizadevati za čimboljše vrednosti sladkorja, moraš biti srečen, če ti to uspeva le večino časa. Težko je namreč biti 100% perfekten - zakaj bi bil torej slabe volje zaradi tega? Bodi srečen s tem, kar si dosegel."

 

Monika

 
 

Age: 27  Year Diagnosed: 2015  Location: Ljubljana, Slovenia

"Before I was diagnosed I was eating so much (I was able to eat 2 pizzas at once). But at the same time, I was losing weight. I was working as an aerobics and pilates instructor at the time, so I just thought it was because I was exercising a lot. Later, I found out that my diabetes was mainly responsible for my weight loss.

Not long ago I realized that diabetes changed me as a person in a positive way. I don't worry about unimportant, little things anymore and I enjoy every moment of life so much more than before I was diagnosed.

Don't judge yourself too much. There are, were, and will be feelings and blood-glucose levels that you cannot control or influence."

 

"Preden so mi odkrili sladkorno bolezen tipa 1, sem ogromno jedla (tudi 2 pici naenkrat) in hkrati zgubljala težo. Bila sem prepričana, da je velika količina vadbe kriva za to (takrat sem delala kot inštruktorica aerobike in pilatesa), kmalu pa sem ugotovila, da za mojo vitko postavo skrbi predvsem sladkorna.

Pred kratkim sem se zavedla dejstva, da me je sladkorna bolezen spremenila v bolj pozitivno osebo, ki se ne obremenjuje več z nepomembninimi, vsakdanjimi problemi. Bolj intenzivno doživljam in uživam vsak trenutek v življenju, kar mi pred diagnozo ni tako uspevalo.

Ne obojajte se preveč. So, bili so in bodo občutki in vrednosti krvnega sladkorja, na katere ne morete vplivati."

 

 

Janja

 
 

Age: 28  Year Diagnosed: 2013  Current Location: Ljubljana, Slovenia

"I was diagnosed by "accident". I have LADA (Latent Autoimmune Diabetes in Adults) and it was caught after I started complaining about my more and more frequent reactive hypos. I had had them since I was a teenager and doctors never thought much of it. I wish more people were aware of LADA and I kind of suspect that lots of type 2s actually have it and aren't being treated correctly. Maybe even type 1's who were diagnosed later in life might have had undiagnosed LADA. I am so lucky it was caught early on, before I got any complications.I also started insulin early on and that's what keeps my pancreas still kicking, a bit.

Learn as much as you can, don't be afraid - you can manage, it is overwhelming in the beginning, but you'll get a hang of it. Also, don't be scared, if you take care of yourself and your sugar levels, you can live a long, "healthy" (without complications), happy life."

 

" Želim si da bi ljudje, predvsem zdravniki bolje vedeli za obstoj "LADA-e" oz., kakor so meni dali nalepko "počasi potekajoča sladkorn bolezen tipa 1". Imela sem neizmerno srečo in super zdravnike, da sem dobila diagnozo tako zgodaj kot sem jo... Ker je bila moja takratšnja osebna zdravnica tako bistra, da me je ba podlagi reaktivnih hip poslala na OGTT test. Sumim da ima veliko diabetikov tipa 2 v resnici LADO in hkrati se je verjetno kar nekaj diabetikom tipa 1, ki so bili diagnosticirani pozneje v življenju (v odraslosti) bolezen kuhala kar nekaj let, pa niso vedeli.

Nauči se čimveč o svoji bolezni, sprva je obremenjujoče, toda ne skrbi - uspelo ti bo diabetes vključiti v svoje življenje. Ne boj se, če dobro skrbiš zase in za svoje sladkorj lahko živiš dolgo, zdravo (brez zapletov sladkorne bolezni), srečno življenje."

 

 

Hannah

 
 

Age: 27  Year diagnosed: 2002Location: London, UK

"'Will you be OK when the show starts?' It's Fashion Week. Seconds before the lights dim and the 1st model walks the runway. (I'm not a model. HA! I'm just at work). "Won't the strobe lights affect your diabetes?" an intern asks. I smile politely through gritted teeth. "You're thinking of epilepsy pal". 

When people share their tales of diabetes.. it's a nice gesture *eye roll*. But. Funnily enough, I can't relate to your Uncle Alan, who had his leg removed before going blind. He's T2. Very different to my T1 experiences- ah thankyou. I'm always quick to shout TYPE ONE before they finish the word diab-. I despise being categorised under the umbrella term 'diabetic' when people don't understand the differences within the condition, and are confused I'm not overweight & unhealthy (the way in which the media has taught them to assume). Quite the contrary. My pancreas just broke. My type is not self-inflicted.

I have it. Get on with it" is my mantra. How incredibly British of me. Many people would be shocked to learn I have T1 diabetes, as it's only close friends/colleagues that I disclose this secret part of my life to. I'm not embarrassed, and happily talk about it. I'm not saying it's easy and there aren't times I feel alone. But it certainly doesn't define me, my lifestyle, or achievements.

Weight fluctuation has been my bug bear. It fascinates me how insulin as a hormone can so instantly affect the body. Like most adolescents, I had a phase of being silly with food. But also became silly with insulin when I learnt it can cause rapid weight loss. Not something I'm proud of. The DAFNE carb/insulin ratio counting system helped me manage this, and I would recommend it to anyone struggling. ADDED BONUS: it's also made me a secret wizard at maths/biology in relation to T1 diabetes!"

 

 

 

 

 

Appleton

 
 

Age: 46  Year Diagnosed: 1977  Location: Undisclosed

"Appleton is an Artist and Photographer.  

Creating art, images and sculptures for over 40 years.

After surviving a diabetic coma at the age of six, Appleton began to collect almost every Insulin bottle that has gone through his system. Along with hundreds of these bottles, faded syringes and old blood strips would remain as well---all reminders of his survival through the years.

With no cure in sight, Appleton’s mission is to spread and raise awareness of diabetes through his art.

Appleton offers this….a small footnote amongst many.

Throughout ones life they may never have to ask for anything—to humble ones self.

To be head down in request. They may never to have reduce themselves for a hand out or help.

In the course of my over 40 year sentence with type one diabetes, I have had many such experiences. Ones where timing took precedence over politeness—dropping blood sugar and no money don’t mix. Pleading / assuring a store owner you would be back and you weren’t stealing.

During my teenage years there weren’t any ATMs or 24 hour banks. If you didn’t have money —you didn’t have money.

You had to humble yourself and explain why you needed help——not many people want to do that —especially as a teenager

One of the heavier thoughts and daily battles with diabetes is the aloneness of it all. Even with the closest of loves and the dearest parents—one with diabetes will feel, at sometime in their life an aloneness that only they will know. Only ones with type one diabetes will know.

As much as we'd like to imagine, people in our lives w/o type one diabetes— will never know the weight we carry.

But in this —we are not alone.

My art evolved from my studio to the street and back again. I have always been inspired by art, writing/messages in street art—the stories you can get from the walls of any city.

A woman wrote to me that she see’s my art on her way to work.Not knowing who, what, why etc….she realized immediately it was an insulin bottle from her youth.

Later meeting this sweet person—she would tell me that her first thought was…”I am not alone.” For me that is what my art is about…

Today I am not alone."

Ana

 
 

Age: 31  Year Diagnosed: 2002  Location: Long Beach, Ca

"In college, several times when referring to needing to take a shot (of insulin) people thought I was taking a shot (of alcohol) and they wanted to join me.

When I got diagnosed, I was a senior in high school. I was loading up my backpack with a different beverage for each period and peeing constantly. My prescription glasses weren't working and my prescription had to be increased. My pants were loose but I just started wearing a belt. This went on for a couple of weeks before my boyfriend went out of town and I was tired of being at school. I called my mom and said I didn't feel well. We went to the doctor's office together and then my mom told them she thought I might be diabetic. It never even crossed my mind! After that I was rushed off to children's hospital for the weekend and the rest is history...

Life is not over! My grandpa (who was also type 1) would be amazed at how wonderful my pump is now. Things are only getting better for us. I don't think our grandchildren will even have to worry about half of the stuff we do." 

Carla

 
 

Age: 49  Year Diagnosed: 1994  Location:Orlando, Fl

"I was diagnosed with diabetes 23 years ago and my father lost his life at the age of 50 to complications of this disease…way too young!  I don’t want this to be a sad story. There is hope for me and the others that are on life support (insulin). Because of the work of many people, there have been advances in research and so many life changing technology tools.  I am passionate about raising money and awareness for Type One, not only for myself, but for all the families that have been affected by this disease…it is a family disease.  If I could prevent one person from having to face the chronic nature of diabetes, my efforts would be well worth it!

Ironically, I would not change having had diabetes. It has made me stronger and given a higher purpose to my life.  I have run marathons, ridden in century bike rides and participated in my first Ragnar Relay this year on a Type One team!  I’m not sure I would have accomplished these goals (and more) had diabetes not pushed me to prove it could not hold me back.  With that said, I am ready for a CURE and ready to give up my diabetes, but not the wonderful people I’ve met along my journey.  Too many people to name but there are wonderful people working and supporting the Type One community that for me include JDRF, Diabetes Training Camp and Type One Run.

With all that said, I would give all my worldly possessions to talk to my father just one more time….Type One to Type NONE. THANK YOU!"

Robin

 
 

Age: 31Year Diagnosed: 2012 Location: Thousand Oaks, CA

"A few weeks before being diagnosed, with my symptoms raging and out of control, I definitely peed my pants. In public. At the age of 27. Fortunately I was wearing black, and that is the only good thing about that experience.

I love the T1D community - I have found such warm, kind, fun-loving, life-affirming people to share with and learn from. I was so scared and defeated when I was first diagnosed, I didn't have a clue about diabetes in any of its forms let alone what my life was about to turn into. I really didn't seek out community at first, while I took a lot of time to recover and get healthy and learn about my new life. When I was ready for community, though, it was there and has been there with open arms!! I've been to camps, meet-ups, happy hours, and of course online community is huge. I love your work, Laura. I love @appletonpictures on Instagram, he's doing super cool work with graffiti and creative advocacy for type 1. I haven't gotten a Myabetic yet but I probably will the next time I get on a computer. Beyond Type 1 has been a great source of inspiration and motivation, I love what they're doing - and I love their Drop logo!"

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."