Video of insulin producing beta cells being destroyed: http://www.jci.org/articles/view/59285/sd/17
Please read below about my Story and Struggles and then on page two catch my Successes and Strategies. Later I'll post interesting links and studies that we've found helpful. Oh, and catch my "snickers" section and let me know of any JD stories you have that would make a fellow JD'er laugh.
Story
I was diagnosed with Juvenile Diabetes on January 2, 2005, at the age of eleven, after about twenty-eight hours of what my parents thought was the flu. We were at a New Years Eve party and I didn't feel good. I ended up with a migraine headache and went home from the party around midnight. This happened just about any time I stayed up late, whether for a birthday party or Christmas Eve. I'd get a migraine, throw up a couple of times, go to sleep and wake up feeling fine.
This time was different. My dad stayed up with me overnight and into the wee hours of January 2nd. He said that around 5am I suddenly sat up on the edge of the couch and looked through and past him with very sunken in eyes and mumbled with slurred speach, "I need the password so when I get to the hospital I'll know I'm with the right doctor." Yep, apparently I've read too many mystery books!
That was the last straw. It fightened my dad. He called my mom's name and she put me in the car and rushed me to the hospital while he called the hospital's emergency room to give them details about my symptoms. Well, they didn't have the ability to treat me because I was too high (my blood sugar, not medicine) so I was taken twenty minutes down the road to Children's Hospital where I spent thirty hours in the Intensive Care Unit, part of the time in a semi-coma. Obviously not the best day in my life.
I had lost 25 pounds in two months and my eye sight deteriorated to the point that the eye doctor made me take therapy playing a computer game to strengthen my eyes. Regarding my eyes, check out the "Snicker" section of the website for a funny story.
The highlight of my hospital stay was when friends came to see me. One afternoon after just starting training on taking insulin, we were using saline solution, via a needle, County Commissioner Rick Perales stopped in. He was awesome! He let me practice using the syringe on him. (My needle adverse dad still tears up when we talk about this.) So here's this eleven year old scared little girl sticking a needle into a retired U.S. Air Force Sqadron Commander! That's when our family started to realize we could cope with Juvenile Diabetes.
I used to think Diabetes was just for older people, but found out Type One is Juvenile Diabetes and typically kids are diagnosed from a few months old up until 21-25 years old. JD happens when the pancreas is no longer able to provide natural insulin to the body. This means that all my insulin comes via a needle and I cannot reverse my Type 1 Diabetes with exercise and diet, while Type 2 Diabetes, typically and confusingly refered to as just Diabetes, can be controlled by diet and exercise because a Type 2 Diabetic's pancreas still works. Type 2 is most commonly caused by obesity and/or old age and most people take a pill once or twice a day to control it. While a minority take insulin, a majority can reverse Type 2 by eating better and exercising regularly.
Okay, back to the Story! Three days after getting out of ICU they released me from the hospital, but, wow, did my life change. Needles, insullin, a poker, carbohydrates, and just plain inconvenience began! In 2007 I was allowed to start using an insulin pump after the doctor helped convince the insurance company that I was a good patient. Later we added a blood glucose monitorying device that, although still not quite immediately accurate, does an okay job of warning me if my blood glucose level is too high or too low. (My dad calls blood glucose "blood sugar" and then shortens it to just the initials "bs" and gets in trouble with my mom, but that's his attempt at humor which helps him get through the rough times and anger/frustration he feels regarding JD.)
I've been able to maintain pretty consistent blood glucose levels and my A1c is okay. Check out my sections on Successes and Strategies to see how I'm doing. There's an interesting part there that talks about how my Children's doctor said I couldn't...well, you'll have to read the rest of the website. You'll like it. I promise.
So, even after all these years with JD, a pump and a monitoring device, people at my high school still ask me about JD. I've taught health classes and am scheduled to teach a few more times starting in the fall as I help my high school classmates become more aware of what life is like with JD.
Struggles
When I was diagnosed, no one else at my school had JD so I didn't have anyone to relate to. That's when we found the juvenile diabetes camp. After spending a week there that first summer, and then four more weeks over four more summers, I've been able to develop some great friendships with other people my age who have JD. Struggles and finding those people who are like me and knowing how it feels to relate is part of the reason I started JDmentors.org. I just cannot imagine an eleven year old who is suddenly lost, and whose entire world just totally imploded, being alone. I've been there done that and it doesn't matter that your family and friends are around, non-JD'ers just don't understand.
I used to play basketball for my school and just completed my third year playing high school tennis and my fourth year of marching band. Non-JD'ers don't realize that when I do physical exercise during the day my blood glucose doesn't just go low during the activity, but it also goes low at night...also from that same activity even though I'm sleeping. The doctor uses a big word for this odd situation, but because of it I have to wake up at 3am every night to check my blood sugar and adjust it. It's really easy to let yourself get an attitude about JD, but I work very hard not to go there.
For me, living with Juvenile Diabetes is a lot easier because I've learned to surround myself with friends and family who love and support me! In fact, I think my dad gets more upset about the JD than I do. I just deal with it and act as any other teenager would act.
Send me an e-mail: sarah@JDmentors.org or sign my guest book!