It was one of the best summers of my life... I remember the pool party, the warm sun and spending much needed time with friends, family and out of school. I kept busy with three different camps and met new friends. It was a new summer with the third boyfriend I’d ever had throughout my 14 years of life. It went by fast and I stayed plenty busy exercising. I had especially taken a liking to walking my dog several blocks with my iPod in hand. So when my shorts started loosening up I thought “Hey, this is pretty cool. I’m drinking more water than I ever have, am taking a few walks, and I’m losing weight. And I’m losing it in the healthiest way! I’ll have the perfect figure I’ve always wanted.”
Fall of 2008, a few weeks before my freshman year of high school was to start, was my final camp – a leadership workshop, was more of the name for it. We were able to stay at college dorms with a roommate, right there on the site of the workshop. I was quiet and shy. Something more like me when I was five years old, not now. I am normally much more talkative, much more social than I used to be. But truth be told, I was TIRED! I felt sluggish even with all that weight gone. I had nothing to say to people. I felt unimportant. Of course, I thought nothing of it. I just wasn’t talkative was all. Maybe it was everyone else’s fault for not socializing much.
I still continued to drink water, and I simply thought all the activities of that long summer had finally caught up with me, and I was just horribly dehydrated. I also believed I was simply tired also because of dehydration (all summer I had been waking up 5 to 6 times in the middle of the night to drink whatever I could get my hands on in the fridge, then use the bathroom, so it was no wonder I was so tired! . . . Or so I thought)
One night at the camp, I used my free time before lights out to shower, fill my water bottle and relax. I finished the water bottle quickly and refilled it again. My thirst continued even after that drink was g one. I felt a sudden craving for something sweet so I walked down to the lobby and bought a fruit punch Gatorade, trying to drink it slowly but failing and drank the whole thing. I also drank the half bottle of Pepsi I had bought earlier that day. And I was STILL thirsty! I was angry.
This is nuts, I can’t drink this much before bed. I used the bathroom, and refused to drink another sip till morning. I kept that promise to myself only because I had nothing left to drink in the dorm room . . . The next morning, I woke up a few minutes after my roommate. I felt wetness. Crap! It was freezing in this room. How had I been sweating? But it wasn’t sweat. It was pee, all over the place. I panicked. My roommate was out of the room now, but had she noticed? I called mom, and told her everything, surprisingly not bursting into tears. How had I done such a childish thing? I was not a bed wetter! It was horribly embarrassing, even though no one else was there. Mom was very calm and asked many questions like always. I told her I wanted to go home. My roommate would notice for sure, and I could never live that down. Mom told me I would be fine. Just stay calm and try to make it through the rest of the time there. She was too many hours away for her to come pick me up, and I just shouldn’t have drank that much before bed. Even at that time, I never suspected something was very wrong with me. I just thought Mom was right . . . I knew drinking that much before bed was a stupid idea! But never did I imagine this would happen. Why didn’t I have better control? Truth was, I really had no control, and just didn’t know it yet.
A month into school starting, things did not become any better. If anything, my constant thirst grew worse (yep, leading to more bed wetting). My pants that were once very fit or almost tight now fell off my hips, literally. I remember a particular night, waking up again. I craved that Coke in the fridge and I sipped it, following it with a small cup of water, then just a little more water, then Coke again. Mom walked into the kitchen, half asleep, and wanting to know if I was alright . . . No . . .
“Just getting a drink again,”
Mom watched me drink and made me stop, “You’ve been wetting more often now. You need to stop drinking so much.” Even Dad, who had also woken up, agreed. Hesitantly I walked back to the couch where I had slept at the time.
“I’m still thirsty.” I told her.
“Honey, you can’t have more.”
I literally burst into tears, “Please, mom, I’m thirsty!” I begged for more water, just a little more, until she finally allowed me one small sip. After they went back to bed, I continued waking up to sneak more “sips” from the sink or wherever else was convenient enough that they wouldn’t know I was still up.
A few more weeks passed and I had reached Homecoming week. Finally! The week I had been most excited for. I couldn’t wait to dress up, go eat with my friends, dance with my boyfriend, and feel like a princess for a night. That was still a few days away . . . for now it was another miserable week at school . . .
Each class (I have eight all day), I used my energy long enough to take notes, listen, study . . . Then if the teacher wouldn’t yell at me for it, I lye my head down on my desk and closed my eyes. My heart was racing . . . I wanted to go home and sleep in my warm bed, no, I just wanted to sleep now . . . I couldn’t wait for that run to the drinking fountain after class, for that glorious drink of cold water . . . my mouth was so dry . . . This was what ran through my thoughts everyday, since school had started this year.
Two days before Homecoming came and I asked my best friend’s mom, Anna, (who is also a nurse) as they picked me up for a ride to school, if drinking tons of water was bad for people. She asked me some of my other symptoms, and I told her my weight had dropped tremendously (even though I hadn’t weighed myself, it was easy to see I had lost way more than normal) and yet I had been eating fine. I was exhausted and always using the bathroom.
She looked back at me in the rearview mirror, “Elena,” her voice was very quiet. “You should get a blood test done.” Then she said a sentence I will never, ever forget. “I don’t want to scare you, but those are signs of Diabetes.” Of course, I told my mom what she had said (everything but the Diabetes part, anyway). I wasn’t worried. I didn’t have that! I COULDN’T have that. I just wasn’t the right type of person to get that! I mean, I had known a girl who’d had it, but I never really understood it. But no, whatever it was, I could not possibly have that. I even remember joking about it with my boyfriend. “I’ve already had enough health issues this year! Now apparently I have Diabetes, too!” How right I was.
Homecoming Night. I pulled on that beautiful maroon dress I had bought cheap. My hair was all up and curled and beautiful. As I put on my make up, the emotions overwhelmed me, and I just burst into tears. At that time I was thinking that I’d never felt so beautiful . . . Mom joked that if I kept up the waterworks, I should just avoid eye make up altogether. I managed to stop long enough to put it on, but only started up again when my boyfriend, Aaron, showed up with the most beautiful wrist corsage a girl could ask for. That night at the dance, I remember feeling exhausted. I drank some of the punch offered at the dance and afterward, for some odd reason, the room spun uncontrollably. I felt like, quite frankly, my drink had been spiked with hallucinates. Little did I know, at that moment, I was sips away from dying, and not from the punch, from a high blood sugar.
The next day I felt happy. I had had a good night’s sleep. I had the greatest night of my life. Everything was perfect. I had felt perfect. From my looks to my weight, I had pulled off the homecoming look. We went out to my grandma’s at the nursing home to take her lunch. It’s kind of a traditional weekend thing in my family. After lunch, we decided to stop for coffee. While we waited, mom walked over to a Pharmacy right next door to the coffee place. She came back while I was sipping my coffee.
“There’s a pharmacist over there who wants to know if you would be willing to have your finger pricked for a blood test.” Mom told me right out. My eyes grew wide with horror! If this was anything like finger pokes at the doctor, I most certainly was NOT willing!
“I know it doesn’t sound very fun, but I think you should do it.”
I remembered Anna had wanted me to, my mom wanted me to, and now this Pharmacist did too. I finally agreed.
The finger poke stung a little and I waited patiently for the little device that the Pharmacist, Taylor, held to tell me what my blood was. What is this going to say? I wondered. Taylor looked grim when the results came back. She looked at me, than at my mom and showed us the meter. “The results say ‘High’.” She was right. The meter said nothing but that word.
“That’s not normal,” Taylor told us. “And this meter doesn’t read anything past 500. Right now, your blood sugar is higher than that.” Is that a bad thing? I panicked.
“Do you think the coffee might have affected it?” mom asked her.
“I don’t know, but we can give it another hour and check again. I will also call a doctor and see if he can get her in today.” WHAT? Another hour stuck in that place. And then I had to go to the Doctor too?! This was crazy! I had counted on a fun day out. Spending time with my family, and drinking that delicious coffee (which I had downed quickly) . . . NOT a hospital run and being stuck in a public place for another hour! I just broke down. Mom sat there with me and comforted me.
“The doctor will call back. You will get checked, and it may not even be anything serious.” She told me. But the realization had hit me. It WAS serious. I felt dizzy. Numb. Weak. I suddenly felt like I was ready to throw up. I ran to the bathroom where I cried my eyes out. I looked at myself in the mirror. To me, I looked healthy but if you looked closer, you could see sunken in eyes. Most the bones in my face and everywhere else were starting to show . . . I couldn’t see this. I was denying myself. I’m not sick! I feel fine.
The hour dragged on and even after the second blood test, reading High again, the doctor still didn’t get back to us till half an hour later.
“He will see you now at the ER.” said Taylor, smiling at me. I thanked her, still teary eyed as we left for the hospital. I closed my eyes on the way there, most of the crying done. I fell asleep and listened to my mom telling my step dad where we were going. When we arrived we did nothing more but wait . . . again. Hadn’t I waited long enough? When I finally got in to see, they did yet again, another blood test, but this one was not read on a meter. They also did a urine check. I could barely keep my eyes open and drank water while I waited. The long hours I spent there waiting for the results was torture… The doctor (who happened to be the dad of someone I go to school with…yeah, just my luck) finally came in and just came right out and said it . . .
I was diagnosed with Type 1 Diabetes on October 5th, 2008, the day after one of the greatest nights of my life. My blood sugars were said to be the highest they’d ever seen in a long time, not 500 or 800 but nearly 1200. And the most unusual part was that I had absolutely no ketones (traces of protein in the urine that shows the body has been using fat for energy). The doctor and nurse both explained that normal blood sugars were somewhere from 70 to 120. The doc said had I not come in sooner, I very well could have been in a “Diabetic Coma” or even died. Well that was just GREAT to hear!
“You’ve just earned yourself a night at the hospital, young lady.” The doc tried to joke with me, but I just burst into tears again. I know right then that this would not go away. I was stuck with this, and I had to stay in a horrible hospital where they would jab me with needles and wipe me with those disgusting, cold alcohol pads. I can’t even describe how difficult it was for me. I was stuck not at the hospital one but four ½ days. The first night…they hooked me up to an IV, failing to get it right the first time and had to try it again. It felt horrible, and the strange smell from the meds appeared in my mouth, tasting like vinegar and salt combined. They woke me every single hour all night and morning to check my blood. I ate small meals my whole stay there, smaller than I was accustomed to and complained that I was still hungry. My body had been deprived from food and even though I had been eating, the nutrients were not being absorbed. They just sat there like muck in my veins, not knowing where to go because there was no insulin to tell it that. I noticed after being hooked up to the IV for that night, I no longer felt the need to drink. That was probably the highlight of the whole thing . . . being able to sleep through the night with no need for water. (however, that was also ruined by the constant blood checks)
I refused to tell anyone about my Diabetes till my second day there, when I really needed someone. The first person I called was Aaron, my current boyfriend who came over as soon as he was able and just held me while I cried. He even came in one morning before 7 am to see me. I had my mom call my dad to tell him the news, because I couldn’t handle telling him something else was wrong with me . . .
After three days only, I was ready to go home, and even the doctors were going to let me leave. I had suffered through small meals, learning about my disease, constantly receiving looks of sympathy, jabbing myself with pointy needles…and everything else in between. I was SO ready to leave! However, still not accustomed to my insulin dose, and still starving, I made the mistake of eating turtle cheesecake. I earned another miserable night at the hospital.
It’s hard to describe my week at the hospital. I met some very kind people…people I didn’t even know personally from my church sent me prayers, blessings and even gifts of healing. I was visited by four of my best friends, the first four I had decided to tell first. I was also visited by pastors, family and other wonderful people in my life. My voice teacher visited me saying with a smile, “If you can’t come to voice lessons, I will just have to come to you!” Then she hugged me. Taylor, the pharmacist who helped me out from the very beginning, sent me a balloon and card. I shed a lot of tears, suicidal thoughts, and several emotionally wrecked feelings and also had many conversations with God. I thanked him dearly for keeping me alive . . . for giving my body the will to fight for life for so long…but why, oh why, did I have to give myself shots now to eat?
To this day, I still wonder how I was lucky enough to make it. How, out of all the people dying in the world who had just as much a right to live as I did, I made it. I was so sick, and just hadn’t known it. It’s also hard to believe I had absolutely nothing to do with receiving type 1 diabetes…it just kinda happened. I’m feeling much better nowadays, keeping my sugars under control quite well. I’ve been diabetic nearly eight months. It’s been a rough year and as Carrie Underwood would put it, a carnival ride . . . but hey, if God thinks I can handle it…bring it on!
Thank you so much for sharing your diagnosis story with us. I felt as though I was reading my own story. The only difference was I was working and you were in school. I have even though the same thoughts of why me? and why was I so lucky to live? Everything happens for a reason. Why did we get diabetes? I don't know that answer but, what I do know is you just have to live your life to its fullest and never ask why.
Your description of what you went through is the most eloquent description of the onset of type 1 that I have ever read. You must be sure to hang on to it for the rest of your life. I was only 10 when I was diagnosed, so I wasn't quite prepared to write about it as you have. And now, 66 years later, I don't recall all the details, just some of them.
I attended a meeting on Saturday, May 9, 2009, at the Joslin Diabetes Center in Boston. It was a meeting of 50-Year Medalists, people who have each lived for more than 50 years with type 1 diabetes, and who have been awarded Joslin 50-Year medals. There were more than 50 medalists at this meeting, and each of us had the opportunity to speak for 3 minutes. These talks were so inspiring! So, what does this mean for you? I think it means that if you take good care of yourself, you have a long life ahead of you. And it sounds like you are prepared to handle it.
I think we are all lucky to be able to live and tell our stories of how we found out we have diabetes. Sounds like Elena you have a good supporting cast around to help you out along the way. I can also remember the day that I was put in the hospital for being diabetic. It was so scary seemed like 500 people in that small room. I also remember being at the doctors office in the afternoon and the student doctor working with the main doctor just opening the door and telling my mom and I that I was diabetic and shutting the door.
We are all here to help you Elena, any questions or problems people here can help you out.
Thanks you guys, for all the amazing comments, thoughts and support about my story and other posts here! I really love coming to this site because I feel safe here, and I feel like I can share anything that other people wouldn't understand. It's so great to know there are other people that went through and are going through the same tough experiences. Thank you again for replying.
Ditto, I felt like I was reading my own story. That was a very candid description and I was glad you included even the embarassing details. It's so easy to blame yourself for these symptoms like fatigue, frequent urination, craving sugar and juice, etc., or keep them a secret because it's embarassing.
I got really lucky. My friend mentioned in passing the first time I got blurry vision that when she had gotten blurry vision, her dad had taken her straght to the endocrine instead of the opthomologist, just to be sure. She turned out not to be diabetic, but her offhand comment planted that seed in my mind. It's amazing how easy it is to recognize the symptoms when you know them, like your friend's mom and my friend. But if you're unfamiliar with diabetes, the symptoms seem like symptoms of extreme stress.
At first I just figured fatigue and blurry vision were pretty normal
for a law student. It was the weight loss and the crazy thirst that
made me go in and get tested, thank God. I also realized after the fact that I had been constantly preoccupied with sugar all semester. I knew all the places in the law school that had bowls of candy or baked goods. I was also so tired. I was behind on my work but thought it was just usual 2L blaze that happens halfway through law school.
But I became really worried when I searched my symptoms on WebMD and each permutation kept coming up diabetes. My grandma had type 1 but I thought that at 25, I was much too old for it. I was certainly too young for type 2 and in good shape. I had run 2 5K's earlier that month! But I figured I might as well eliminate it as a possibility.
When I did go in, the student health doctor told me "We don't usually get people in thinking they have diabetes." I'm pretty sure they tested my blood sugar just to humor me, it's a cheap test anyway. Then she came back in, sat me down, and told me the same thing they told you. "Your sugar is too high for us to measure and we're sending you to the ER." I had large ketones too, it's
a good thing it didn't go on any longer or I would have ended up in
there anyway with DKA.
I empathize with you on the not wanting to tell people. I would make a couple phone calls from my couch where I was essentially hospitalized in my own home, and then get sick of it and stop picking up the phone for the rest of the day. I didn't want to explain to each new person what I had and how I found out and no, I didn't give diabetes to myself, and no, I can't just treat it with a pill and yes I will have to stab myself every day forever but no my life isn't over but yes it does hurt every time.
The upside of being hospitalized is that everyone probably showed you how to do things like test your blood glucose and what to eat. My first weekend of diagnosis they didn't even give me insulin! They just sent me home with a meter and told me to test, without showing me how to use the meter. Friday night ER docs and pharmacists. <rollseyes> I was in tears because I was stabbing my fingers and I couldn't make it work! Luckily I remembered my friend with type 1 was in town and I called her up. She's been a godsend and she always reminds me to stand up for myself against my doctors if they're not giving me what I need. Like Insulin.
I had to fight for my first endocrine appointment too. Usually when an adult calls in, they have type 2 diabetes and can wait for an appointment. They asked if I could come in after a month!!! I had been eating zucchini and tofu all weekend and still had super large ketones and had to cry on the phone to get an immediate appointment. I told them I couldn't keep living without insulin. I wasn't exaggerating, apparently.
You have a good attitude babe for someone so young. So what if our bodies don't process food on their own? I'm going to get a mechanical pancreas and strap it to my leg, that'll teach my beta cells a thing or two. ;) Thank goodness for that pharmacist who insisted on testing your blood sugar.
I'm sure many of you, at the time of your diagnosis, had an IV, and many have had IVs since then. But do you realize how much the technology of delivering an IV has advanced? Now you can usually bend your arm at the elbow, and move your arm at the shoulder.
But back in 1942, when I went into what I later learned was DKA, while unconscious, my arm was strapped to a board, to hold it rigid, so there would be no interference with the IV needle, which I'm pretty sure was bigger than what they use today. It saved my life and brought me back to consciousness after I don't know how long, but I still distinctly remember the pain I experienced after my arms (first one, then the other) remained strapped in this position for several hours (or maybe days). For me, this was the worst thing about getting diabetes!
This is a response to Gina's question about my complications. I had background retinopathy, starting about 1964. It became proliferative about 3 years ago and was treated with laser, but seems to have stabilized. I also have glaucoma and use drops to keep the pressure under control. But no kidney problems or neuropathy problems.
I find it amazing how very little I knew about T1 diabetes. I didn't even know what diabetes was till i was diagnosed. I'm thinking of publishing my story publically where I live. It will make people more aware about Type 1 Diabetes and how many more people are actually receiving it now. Please tell me what you think of this idea.
Elena, like Tom, I'm another 50 years plus T1 guy, and your story is almost a replica of what mine was. I got diabetes a few months before my 14th birthday. Diabetes doesn't stop you from doing anything you wish to do. I've played numerous sports all my life and am still very active. This year my holiday is a cycle trip from Brussels in Belgium to Amsterdam in Holland.
The only advice I'd give you is to keep your blood sugars as near to normal as possible, eat good food, and stay active. I see that you're doing that at the moment, so just continue in that vein and in fifty years from now you will probably be advising young folk like yourself, if a cure has not been found by then. - Wish you a long and happy and fulfilling life ahead.
I think your story is an inspiring one, and your idea of publishing it is a good one.