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Permalink Reply by rick phillips on September 26, 2011 at 5:44am

Disney World!!!

Disney World is not always the best place on earth, I was 16 and as long I could remember I wanted to go to Disney World. I know it sounds strange but I sure wanted to go. Trouble was I also wanted to back backing for the second year in a row at Philmont scout ranch in New Mexico. I mean I was set for a 5 week adventure at Philmont, I had been chosen to go KCM, that was sort of the precounselor path for 16 year olds. But I really wanted to go to Disney World. Well my parents had never been to FL and while my mom was blind she also wanted to go, and that meant both of us were going to get a cool wish. Three Days in Disney World. I was so excited..

There were a couple of things I had to first. I had to get my physical for Philmont, and in those days I had to take that awful Glucose tolerance test. No worries I had always passed them and so I happily took a day off school went to the hospital, harassed the lab techs and drank that awful awful stuff. I went home and waited for the results. Just like clock work I was great. the results and physical were fine. Absolutely no issues.

In those days one always drove to FL. not fly and i had my beginners permit. Which meant i I could drive in Indiana but no where else. So to start the trip i took the wheel my dad int eh front seat giving me instruction and away we went. I got about 50 miles and asked dad to take over, I was not feeling the best.

We arrived and I stayed in the hotel room that evening and went to bed very early. and i started peeing. I was up 6 times that night. The next day we went to Disney World. Fantastic place. Well maybe it was I really don't know. I spent the next two days going from drink stand to drink stand. My father was angry at me. I mean imagine the cost of drinking 60 OZ anything at all as many times as you can. Yes of course I went on some attractions. I left to pee at the hall of presidents, I get out of line at the magic whatever to get a drink. I was so tired I passed on magic mountain. The pirates ride, yeah not so much. the ghost ride? Well seems I missed the ghost with my head bent over the side throwing up.

that night it got worse, and in the morning Mom took my Blood sugar. Well predictability it was 4+. Ha, we had no idea how high it was, just 4+, it was the old days remember? Anyway my mom wanted to see the gulf ocean so we took off that day for the gulf. Despite the ladies with very few clothes I wanted to stay in the hotel room.The next day we were off Indiana from whence we came. No I did not drive going home, upon arrival at home, I was found to be 819 and spent the next week int he hospital. I was lucky to get home and lucky my mom knew what it was. After all we had already spent 15 years with her disease, so it was old hand.

Rick Phillips

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Permalink Reply by DrewG on September 26, 2011 at 11:25am

When I think of the day I was diagnosed with type 1 diabetes—January 15th, 2005—my senses and memory are in a constant state of shifting. Sometimes I feel the uncertainty and confusion in my stomach. Other times I smell old hospital ham sandwiches or hear the beeping of machinery. More than anything I remember thinking that my life was changed forever, but since I didn’t know what type 1 diabetes entailed I wasn’t sure what changes were in store at all.

I had gone into my pediatrician for a routine physical and was told some ominous news after a urine sample was taken: “there are traces of sugar in your urine. You need to go to the ER immediately.” To say I didn’t know what was going on is an understatement. I was beyond oblivious.

In the time leading up to my diagnosis I had felt and exhibited all the telltale signs of undiagnosed diabetes, but was either too ignorant or foolish to have them checked out. I was constantly thirsty and drank sugary Snapple drinks during school, a process that only made my condition worse. During the night I was waking up and urinating constantly to the point that I was only sleeping a few hours, if at all. My lack of sleep and energy began to show over the extended period I remained undiagnosed; I didn’t think coherently, felt awful and lacked energy.

As a result my grades and concentration began to slip and I was off to a terrible start in my freshman year of high school. Two unexplained instances of fainting in class were another red flag that I ignored for far too long. With the gift of hindsight, it’s hard to believe I allowed my body and mind to struggle so long under the burden of health so obviously in peril.

When I got to the emergency room my blood sugar was almost 500 mg/dL. A nurse who had no emotion in her voice told me immediately that I had type 1 diabetes. I remember my mother’s face becoming lined by wrinkles of worry and sadness. I remember thinking I lacked any clue of what I’d been told had meant.

It’s been almost 6 years since that night and I still think about it frequently because it’s a welcome reminder of how far I’ve gone in coming to terms with the diagnosis. I recall my anger at no longer being able to wolf down bowls of Penne Alla Vodka or drink Vanilla Coke. I’ve since understood that these are small concessions for a disease that allows you to continue living, albeit with limitations and immense responsibility.

Diabetes is a tremendous part of me and the same thing can be said for every other diabetic I meet. It’s like a tremendous family with one large similarity and hundreds of small commonalities lying under the surface. We all share the same frustrations, the same triumphs and the same meticulous attention towards managing the disease.

Since my diagnosis I’ve curiously combed the Internet constantly looking for news on a miracle cure. Now that I’ve found and am working with the Juvenile Diabetes Cure Alliance, I realize that there is no use in waiting around for an undefined cure with an ambiguous timetable.

As the voice of the donor, the JDCA has sights set for a cure for type 1 diabetes by 2025, with a concise and clear interpretation of what exactly a cure would mean. With proactive and innovative approaches and analysis, the JDCA is carefully examining which foundations give the cure search the most traction.

I will always look back at that January night as the night I was diagnosed with diabetes. With the help of the JDCA I am confident that I, and all the other type 1 diabetics, will remember the night we heard there was a cure.

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Permalink Reply by Kari on September 26, 2011 at 4:11pm

I was always a skinny kid, but apparently I lost a lot of weight just before diagnosis (I was 6...I don't remember the weight loss). I have seen pictures and I was truly very very very skinny. Like, scary skinny.

I began wetting the bed. I had to go to the bathroom all the time. No matter how much I drank I was thirsty. As a 6 year old I was drinking an unbelievable amount - probably 2 gallons a day. All I wanted to do was drink.

This all happened fast, and only went on a few days before I was vomiting and was taken to the ER. My dad had a good idea it was diabetes, but was sort of in denial up until the vomiting. Then he just knew it had to be diabetes (he grew up with a sister who was diagnosed at age 9....). I don't remember much of my hospital stay except that it lasted a week.

They made my parents practice giving shots by shooting an orange and taking turns on each other. :)

I remember I had a lot of fun at The Children's Hospital of WI, but when I went home I didn't know I was still going to need shots and pokes (everyone either did a horrible job explaining it to me, or I was in deep 6 year old denial!) and I was shocked when I had my first fingerpoke at home...and cried hysterically when my mom had to give me a shot.

That's all I remember (it was over 19 years ago).

Edit to add: I do remember that when I got the ER they took one look at me and told my mom to go home and pack me a bag - that I was going to be admitted and would be there a while. I do remember having to do a glucose tolerance test (why? I don't know)....I threw up all that horrible stuff I had to drink, and had to start all over.

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Permalink Reply by Nick Masercola on October 5, 2011 at 8:37am

I couldn’t stop peeing.

Every hour I’d wake up in my bed—my bladder shaking with pain—and make a mad dash to the bathroom, peeing as if I hadn’t seen a toilet in days. For two weeks I’d been stuck on this schedule, and the lack of sleep was evident in the ever-darkening bags under my eyes, and the numbers slowly dropping off the scale everytime I stepped on it.I was happy about that one. Granted, I had never been fat, but I was never a muscular kid either. I figured that in the middle of sweltering July heat and endless trips to the pool, the skinnier I was, the better. That’s how I rationalized it. I didn’t think anything was wrong—or at least that’s what I kept telling myself.

Sound familiar?

But there was more to it than that. There wasn’t a moment in the day I wasn’t thirsty—constantly sucking the last dregs out of the container of orange juice, emptying every can of ice tea. Even stranger, I wasn’t really hungry anymore—a few bites from a burger and I was good for the rest of the day. I figured it was just a phase, maybe some part of puberty that people don’t talk about much—the part where you drink and pee incessantly and then one day you wake up with a deep voice and a beard.

A week later, when I was struggling to finish a breadstick at Olive Garden (the only thing I’d eaten all day) I knew something was wrong.

The next morning I found myself sitting in the doctor’s office, counting the ceiling tiles, waiting for the results of my blood test. I wasn’t even sure what the tests were for. That’s something that bothered me, I’d ask for an explanation, and the doctor would say “lots of different things.” What “things”? Strep? Cholera? Drug addiction? Leprosy? I didn’t see the point in not knowing what the hell they were searching for. It was the summer before high school, and I guess the doctor thought I was too young and that she needed to keep bad news a secret until the last minute.

But when she walked in, I could tell by the look on her face that things weren’t good.

“Well Nick, your blood sugar is extremely high.”

“Blood sugar?” I asked, not even realizing that blood had sugar in it.

“ Yes, um…it was one of the tests she ran.” For a moment it seemed like that was all she was going to say, but I guess she noticed the dumb look on my face. “When you eat food, you’re pancreas produces insulin to break down the sugars in the food to use as energy. Any excess sugar stays in the blood. Most people have a blood sugar between 100 and 150.”

“ Alright.”

She stopped, as if I was supposed to ask the next question.

“Well,” I started, “ how high was mine?”

She sighed.

“ Five hundred and twelve.”

Shit.

The next three days in the hospital were boring. Not nerve wracking or anxious, but boring and confusing, a mix of blurred memories and crappy hospital food. The first hour I was there they drew blood, ran a ton of tests, shot me with drugs, told me to rest, and then had some lady come in and start going over dietary things and how to measure carbs and then come up with the right amount of insulin to give and—well, it was a lot of information. But after that I was pretty much left in a room to watch television and be watched by security cameras. At the time they didn’t explain what they were monitoring for, but I came to find out that my blood sugar was so high I could’ve slipped into a coma at any moment.

Yay ketoacidosis.

After a long two days, I was let loose with some instructions, a tester, some syringes, and a whole lot to figure out. The day I got out I had to head to my high school to get my student ID picture taken. I laugh everytime I see it, because it looks like I was hit with a freight train right before I stepped in front of the camera.

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Permalink Reply by Stoyan on October 5, 2011 at 3:17pm

For me, it was actually quite rapid. And kind of an interesting story.

When I first realized something was wrong, I was on a plane from France to New York. The flight was over 8 hours long - and with every minute I grew more and more thirsty, consequently making me go to the bathroom every 20 minutes or so. At first I couldn't understand at all why my throat was drying up so fast - my only explanation was that it had something to do with the airplane air, or the water they were serving me. I thought though that it will be over if only I survived this nightmarish trip.

But, of course, it didn't turn out that way. For the next week, I could not quench my thirst no matter how much and what I drank, and could not get a decent sleep due to all the bathroom trips I was constantly making. I even threw up twice. None of that was enough to alert me to the fact that something was seriously wrong - I just thought it had a hard time adapting to the climate or something. Or to be fair, I was a bit too afraid to allow myself to think about it any further.

When I lost all strength in my muscles and could no longer get out of bed was when it became obvious to my dad and everyone around me that I needed a doctor - fast. At that point I was too weak to think much. Whatever was happening, I needed help. Thankfully, I got it in time, and the insulin got be back into shape sooner than I expected.

The moral of the story is - if you start experiencing weird symptoms, do not wait until you are rooted to your bed to seek help. Do the smart thing, and don't risk it.

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Permalink Reply by Kitabparast on October 5, 2011 at 5:22pm

When I was 15-16, we were living in Pakistan. (I was born in the US, moved to Pakistan, then the UAE, then back to the US.)

One winter, we were in Egypt. I drank a lot of water and went to the bathroom often. But, c'mon, that's to be expected in a desert country. Once scene from Egypt I remember very well: we were waiting in the airport for our flight out of Egypt. I was thirsty, so I finished the big bottle of water Dad was carrying. I then asked Dad to get me another bottle of water because I was still thirsty. He bought it, and I finished it without a break. Then I went to find a bathroom. I remember the look of horror and concern on Dad's face as he saw me downing the second large bottle of water.

Life after that was...strange. Lots of getting up at night. Having to go to the bathroom a lot. Drinking a lot of water. Things felt strange at school. Sometimes, after PE, I'd feel like I had no energy at all, as if I wanted to pass out.

That summer, we visited the US. (We'd visit every 2 or so years.) The pattern became all too familiar: going to the bathroom every couple of hours, lots of drinking water. I became an expert at finding restrooms in restaurants and stores. And finding water fountains. However, I couldn't sit through any movies: every movie we went to, I'd always miss the ending because I had to go to the bathroom. But it's summer, right? It's hot. (I learned, from a very painful lesson, always to go to the bathroom before leaving a place, because by the time we reach our destination, no matter how close, my bladder may be very painfully full.)

Upon returning to Pakistan, I happened to tell Dad about getting up numerous times every night to go to the bathroom. Still quite calm, he nodded, and called someone. He told me I had an appointment the next day that he will take me to. We went to a clinic. I was a little surprised. "It's just a small blood test," Dad said. "You won't feel a thing."

Now, allow me to give some background. I absolutely hated needles. Hated them with a passion. When I needed a get a physical done, as a requirement to get into my high school, I literally wrestled with the phlebotomist. So, this was a major gamble.

Anyway, I was still in a bit of shock so the nurse was able to take some blood easily. We went back home. We didn't really talk about why I needed a blood test. Dad knew everything about everything medical, so I trusted him. And I knew I would be told what I needed to know.

The next day we returned. Dad and a doctor talked for a bit. He didn't seem too happy. But, still calm and collected, we left. He made a few more phone calls, and informed me that I would going to the hospital. "Why, what's wrong?" I asked.

"Oh, you might have diabetes. But we're not sure. We're just going to go and have a few more tests done." He was quite sure what the blood test results meant.

"I might have diabetes? How do you treat that?"

Dad hesitated. In a low voice, he answered, "Oh, maybe a pill or something. Nothing major."

So, the next day I headed off to the hospital. They did some more tests. Later, they came with the news. There was no doubt about it: I had type 1 diabetes. I would have to treat it with multiple injections every day. I would have to watch my diet. I would have it forever.

I was there for about a week. Dad stayed with me the entire time. The rest of my family would come visit me every day. They all looked happy and cheerful and upbeat. Diabetes can't be so bad, I thought to myself. Look, no one's upset or crying! So, I took it well. I took it in stride.

What I didn't know but found out later was that my family was utterly devastated. Mom cried all day. My brother was so shocked he hardly ate anything. My sister was too young to understand. Dad did his very best to keep up an upbeat attitude even though he was so upset. He made sure I paid attention to what the endless procession of nurses and doctors and educators were telling me. (I now laugh, but back then, I couldn't pay attention while the nutritionist explained about how I'm supposed to eat and portions and whatnot - I had to pee! Dad was not amused when I told him.) My family's calmness helped me accept and move on with the diagnosis. If they freaked out, or if I knew what the heck diabetes was before being diagnosed with it (before my diagnosis, I had never heard the word "diabetes"), I'm sure I would have taken it quite differently.

I was told by well-meaning friends and relatives that my diabetes was a secret and must remain so. Others won't understand. Which turned out to be true, at least in Pakistan.

And thus, it seemed that, almost overnight, my entire life changed. Awareness, and the consequences, will do that to you.

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