Day in the Life...

Kailyn's Story:

I was 14 upon diagnosis. It was the end of 8th grade, and we were approaching the finals week. I hadn’t been feeling like myself, but I wasn’t worried about it because I thought of it just being teenage hormones or whatever. I had been having excessive thirst, the constant urge to pee (4-6 times a night); I was always tired and irritable. On May 13, 2013, I went to the doctor for a normal appointment. Nothing else. At the end, my mom asked the doctor about the thirst issue, and she had me do one of those pee test. Naturally, I wasn’t worried; usually nothing happens and everything comes back fine!

That’s not exactly what happened though. The doctor said she wanted another one done in the morning. So, the next morning I peed in the cup and went off to school while my mom took the cup into the labs to be tested. In 7th period that day I got a call for an early dismissal that I had no idea about. I left school and my mom took me to the lab. Here I had my first of many blood tests, and I still had no idea why I was getting blood taken. From there we went to eat and I didn’t eat because I wasn’t at all hungry. Afterwards we went home and I immediately laid down for a nap (I never take naps). Around an hour and a half later my mom woke me up and told me we had to leave at that moment for Children’s Hospital in Pittsburgh. Three hours later I was having my BG tested in the emergency room. The meter read “high.” No number. Just the word “high.” I later learned that my BG upon arrival was 656! I amazed the team of doctors because I wasn’t sick. Most people would have been throwing up or gone into a coma or developed ketones, but I was fine. So, on May 15, 2013, I was diagnosed with Type 1 Diabetes.

After almost a week off, I was back in school where the rumors had already begun. I tried to keep it a secret, but my close friends knew, so gradually my class started to learn why I skipped homeroom before lunch. They all seemed nervous around me- like they would say something wrong or hurt me somehow. Overtime though, they came back. I’m still friends with my “pre-diagnosis” friends, and I’ve made more since then (they don’t care that I have a disease, and that’s why I love them). They amazed me though because they all made a legitimate attempt to understand what was wrong with me. Especially my best friend, Sarah. When I told her, she immediately researched it and has learned the ins and outs of diabetes.

Being a teenager is hard enough, but throw in an “invisible” disease; it makes things feel impossible. My social life has returned to normal for the most part. I still go to the mall and parties and friends’ houses; the guys still mess with me daily. Now, though, when I go out, I must take a bag with me everywhere carrying my test kit and insulin. I can’t just grab a bite of pizza unless it’s been two hours since my last injection or if I don’t have my insulin. My friends understand this though. They don’t mind if we’re out eating dinner, and I pull my test kit out, check my BS, and give myself a shot; they’re fine with that. I am so thankful for them because I was terrified that everyone would look at me differently, but they don’t. My friends seem to understand it more than adults sometimes. People my age don’t make the assumptions that adults seem to all the time. We ask questions while adults make the common misconceptions. I’m not trying to stereotype, but it’s true. Some misconceptions I hear far too often about T1D are: You just ate too much sugar as a kid; You didn’t exercise enough; Stay healthy; it’ll go away; Type 1 and 2 are practically the same thing; Insulin is a cure or “ Oh that means you can’t eat sugar”.

T1D is unpreventable; there is nothing I could’ve done to stop this from happening to me. Insulin, it is not a cure; not even close. Insulin is more like life support on a day to day basis. T1D is incurable and life threatening. Without a cure, I and 3 million other Americans, including me, will have to live with this for the rest of our lives.

Diabetes is an autoimmune disease (because the only thing tough enough to kick my butt is me T1D). So my body basically attacks itself. My body sees the beta cells (insulin producing cells) as a threat and kills them off. My pancreas does not produce insulin anymore because it keeps getting killed off. Because of all this, I like to joke and say I’m a zombie because I basically have an almost dead organ inside me that attacks itself. In all seriousness, my pancreas does not produce insulin, a vital growth hormone. I’m short for an 18 year old, but believe it or not I was even shorter. Now that I’m injecting myself with insulin, I’ve grown past the height of a 4th grader now so I’m happy.

Untreated diabetes can lead to kidney, nerve or eye damage along with the possibility of a coma or even death.

Anyone can be diagnosed with T1D. Children, adults, celebrities, your child or grandchild, your niece or nephew. It can happen to anyone and there is no way to stop it from happening. Diabetes is 24/7/365- day job. Diabetics are true fighters because we can’t just turn it off. We fight the invisible. We “don’t look sick,” but we have a life-threatening disease. We can do anything, but we have this part of us that will never go away and demands to be present in our lives. Yes. It is extremely hard to deal with it, but I’m not going to let this get in my way.

It affects my life all the time, but I deal with it because I want to live. Sometimes though, I get too much insulin or not enough food. When this happens, my blood sugar drops low. Being low is a hard feeling to describe, but to say the least, it absolutely sucks. I’m going to try and describe it the best I can, though. Okay, so imagine you’ve just finished running a marathon without stopping once. Your legs are shaking so bad that it’s hard to stand up. And your heart is beating so fast it feels like it is going to pound right out of your chest. Every muscle in your body has gone numb, and your whole world is spinning around you. That is the best description I can possibly give for you to understand without feeling it yourself. The lower your sugar drops, the worse you feel. To fix this, you eat sugar tabs or drink orange juice or anything you can get your hands on pretty much. The lowest I have ever been is 24.

Sometimes you don’t get enough insulin or you eat too much food or had a sweet treat. This is when your numbers go high. It is actually really funny in public because I’ll be checking my sugar and my mom will ask “How’s your number?” and I might say something like 275 or whatever and my mom will say “Wow you’re high” and everyone looks over like *insert facial expression*

The absolute worst thing about having diabetes in my opinion though are the endocrinology appointments. You walk in feeling like you’ve done a pretty good job and leave feeling like everything you’ve ever done was wrong. But that isn’t why I hate them. Back in January I broke down at an appointment because I felt the doctor didn’t understand me. She was trying to tell me to do all these things like going to a counselor because I had “anger issues.” In all reality, though, I was just mad that she didn’t understand what I was going through. All she did was look at it as a medical issue, not how it affects everything else besides my body. She then told me something that hit me right in the gut, and the reason I’m standing in front of all of you now. She told me not to hope for a cure anytime soon. She said the likelihood of it happening in my lifetime isn’t too good. In my mind, I knew she was probably somewhat right, but I refuse to believe that. I don’t care if she was telling me the truth; that is not something you tell anyone especially a hormonal teenager with a disease.

Being a teenager with T1D is hard. It makes you feel so alone. I know at my school there are only 7 people with T1D, and only one other boy my age. There’s no one to go to when you want to talk about the struggles. Sure, you can talk to your friends and family, but they don’t know what it’s like. All they can do is provide support and say, “it’ll get better.” My parents always say how they wish they could take it away from me, but realistically they can’t! No one can. I speak on behalf of all the other type 1 diabetics of the world when I say, “One day I want to say, ‘I used to have diabetes.’”

Laken's Story:

Laken is 10 years old and was diagnosed at the age of 7 with type 1 diabetes. Diabetes has not stopped her from what she loves to do most which is Gymnastics. At her very first competition ever she placed first in Vault, Floor, Beam and overall along with Third place in bars. With her high scores she is now eligible to compete at States in April 2017.

Her dad would do anything to help where he can to find a cure for Diabetes and is also Laken's support system through it and has helped her to start following her dream by enrolling and being the sole support for her Gymnastics. Sacrificing his sleepless hours after long hours of work to get her there so that she will always feel even through Diabetes you can accomplish anything.

He's her #1 fan!

When Laken was diagnosed it kind of made everyone put their feelings aside and work through getting her better and understanding and making the changes she would need to do for her Diabetes. Laken never cried about it or has ever asked why me? She shed a tear or two only when she saw everyone upset about her having to be taken to children's hospital after finding out. Because of that, seems like all the adults were learning how to be stronger just like her.

Laken is a 4th grade elementary student. She has a dog named Maggie, her favorite color is blue. Enjoys preparing meals for her dad when she is with him. In her spare time you can find her practicing gymnastics every chance she gets and watching her favorite gymnast Simone Biles or you tube videos on techniques to improve her form and style. She also enjoys going to Penn State games with her dad and sister.

Nothing including Diabetes will slow her down or stand in her way to accomplish her number one goal of making the Olympics someday.

Laken is competing in her very first Gymnastics States Competition on April 22-23, 2017. She's excited and looking forward to it.

Janet’s Story:

My name is Janet. I am now 17 years old. When I was diagnosed, I was 12 years old. So, for my story about my diagnosis, during the year of 2012, I was in 7th grade at the time. I was a little overweight so I decided to lose some weight. It was working out very nicely for me and I felt great too. Then soon I couldn't stop losing the weight which caused me to look a lot different to a lot of people. Mostly ever morning I would drink a glass of milk, a Powerade, and 2 glasses of water, but I was still thirsty. Soon people were wondering if I was anorexic and my mom decided to confront me about it. I told her I wasn't trying to lose the weight anymore, so I went to the doctors on January 30th, 2012. My doctor told me I had to go to the hospital because I had Juvenile diabetes. This was a very big shock to me and my family. My parents took me to the hospital where I got treated with insulin for the first time. It was the most comforting feeling after because then I didn't feel sick anymore and I started to feel better.

Some of the bad incidents I had with diabetes was when I was at work and I had given myself a dose of insulin to correct for food I ate. I then decided to sit down in a dressing room because I was tired. I soon woke up in the office of my manger with my mother and brother there trying to get me to eat something. I had no clue what was going on and it was one of the scariest moments for me so far.

One of the best things that has come with my diagnosis was when I learned about diabetes camp. I wasn't too sure about it at first but when I finally got the chance to go I loved it. I was truly grateful for all of the amazing people I met at camp who truly became my family in a weeks’ time. They truly blessed my life and made me realize it's okay who I am and that I can live with this disease. They comforted me and didn't make me feel like an "outsider". I am so thankful for all of my friends I met because I know these friendships will last a lifetime.

A Mother's Struggle:

During the summer of 2012, circumstances changed and I needed to look for daycare for my son for after school care and during the summer months.

I placed numerous phone calls to local daycare in the Altoona area to be told by each one that they would not be able to take my son because he is a diabetic and they did not have anyone to care for him.

I was literally at the last straw when someone told me to call and speak to Lily Pond. I spoke to the receptionist who put me in touch with their daycare coordinator. She listened to my plight and told me she would at least see if there was anything she would be able to help me with. A few days went by and I heard from their legal representative who wanted to talk to me about my request to have daycare options for my diabetic son.

I spoke at length with the legal representative, explained that I felt my son was being discriminated against because he had an incurable disease. I said I couldn’t understand why it would be any different from the children they take care of currently, which included peanut allergies, use of epi pens and breathing treatments for asthmatics.

I was told that they would speak with their personnel, speak with their attorney and get back to me. Within about two weeks, I was notified they had decided that they would educate their staff and be able to take care of Ethan; and for any future children who are in the same situation that we were.

Sam’s Story:

When I got diagnosed with diabetes I was 8 years old. I had symptoms for a couple of months before my mom finally took me to the doctor. There were a few events that led up to my mom taking me. First was I was eating more than the normal 8- year old, more than my dad, and losing weight. I lost about 20 pounds and looked almost anorexic. I was pale as a ghost and felt sick a lot. My gymnastics coach told me I couldn't practice anymore until they found out what was wrong. A second event that led to my mom finally bringing me to the dr was when me and my dad went food shopping I ALWAYS had to go to the bathroom. While at the bathroom I would then get a drink. (I like to joke I drank the water fountain dry each time I would get a drink because I drank so much). Then I would find my dad and stay with him for about 5 more minutes before I had to go to the bathroom again. While there I would get a drink. This happened about 5-6 during the 1-1 1/2 I was food shopping with my dad. A third event was each night I would wake up around 2-3 times a night getting a drink and going to the bathroom. My parents did not know this until one night I didn't wake up but instead I wet the bed. They were very concerned about that because I was 8 years old. My mom finally took me to the doctor and my blood glucose was 599 mg/dL.

I am 16 now and I have been living with diabetes for 8 years. I have come accustom to checking my blood every time before I eat and when I don't feel well. I'd say my worst moment with T1D is last year a camp when my blood went to 24 mg/dL. I'm not exactly sure what happened when I was low because I blanked out, but I do remember when I woke up I realized I had peed myself! One of the best moments of T1D is being able to go to camp each year and make new friends who are all like me (and understand what I'm talking about when I say something about diabetes). Yes, diabetes does suck, but since I'm stuck with it (until they find a cure) I can learn to live with it the best way possible.