Diagnosis Stories

Hi Rita, and congratulations on making it to 60 years with diabetes! I’ll be there in a couple of years myself, and just finally got my “half century” Joslin medal last fall (I had forgotten about it until someone mentined it). Did you get yours? I was quite surprised at how nice it is, and since my sister was always the medal winner in our family I finally have one of my own😁.
If you don’t mind my asking, how did you wait so long to start your own injections?

Wow, Taylor @Darth_Yader, so this all just happened for you, huh? That’s scary that it took so long for them to figure out what you needed. Thanks for sharing your story!

Hi everyone! I’m a 36 year old woman with type 1. I was diagnosed in 1995 toward the end of my 4th grade school year when I was 10½ years old. I was in the hospital for vomiting, weakness, and extreme thirst. My sugar was over 700. I then spent a week or two with specialists at Vanderbilt in Tennessee who educated me and my family on type 1 diabetes. When I was healthy and informed enough to come back to school, my 4th grade teacher had the entire class draw cards to welcome me back. I remember my first blood sugar meter; it was a bulky gray ‘block’ that took 45 seconds to record glucose. I also remember taking NPH and R insulin through classic syringes! The tech sure has gotten better in the last 20-30 years; now I have a Freestyle Libre 2, and I take Levemir and Humalog through the pens (I used to be on the pump for over a decade, 2009-2020, but the supplies stopped getting covered by my insurance, so I settled back on the pens, which I was on in the 2000s).

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What a heartbreaking story! It must have been so scary to be alone in the hospital. Do you remember the language the drs and nurses used when you were first dx? How they explained diabetes to you? I’m really interested in the differences between one person’s experience at dx vs another and how some people are scared off with language about “complications” while others are told they can still live their normal lives!

It sounds like your dx experience was positive (not scary) and that the drs and your teacher were supportive. Is that true?

I can’t believe how long your dx took, so frustrating!
Do you remember the language the drs and nurses used when you were first dx? How they explained diabetes to you? I’m really interested in the differences between one person’s experience at dx vs another and how some people are scared off with language about “complications” while others are told they can still live their normal lives!

Hello, I got T1D at 14 months old in 1963. My father got T1D a year before I was born. My mother says I started wanting water and peeing at amounts not normal for any child. She started suspecting something was wrong and after changing my pee soaked cloth diaper, she wrung it out and got a sample then checked my urine with my fathers clinitest kit. I tested positive at 4+ and the keytone pill tested the darkest purple meaning I was in dire straits. She called my doctor hysterical and was told to bring me to the ER immediately. I was admitted into the local Catholic hospital ran by nun’s. After they got my sugars under control my parents came to the hospital to get me. They were standing in the long hallway leading to the pediatric section, and an older nun and 2 younger nun’s on either side of her all dressed in full habits came carrying me down the corridor and when they reached my parents she handed me off to my mother and the older nun looked at my mother and said, don’t let him die, then the nun’s turned and walked away. My mother nearly collapsed and my father caught her and I and we left. I was constantly reminded by my mother if I didn’t conform to strict routines and proper care I wouldn’t live past my 30’s and I would end up blind, with amputations, and die of kidney failure when being in elementary school. My mother had issues through out my life due to my diabetes. She would always introduce me to people as, this is Billy my diabetic son, to which they would show pity to her for having a child with such a horrible disease. There was no hiding my nemesis as I was growing up, because she had to make a production out of it constantly. She was a control freak in every aspect of my life with no independence or freedom without her involvement because remember, I was a diabetic. Life with diabetes in those days was difficult, but I’m thankful for what we had back in the day so we could at least survive.

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Moved from another thread, to try to keep all the “diagnosis story” responses in one place:

My daughter was Dx’d in 2015, and we definitely got the positive-messaging version, for which I am extremely grateful!

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I’d just started middle school. Suddenly, I found myself oddly thirsty. After a day or two, I realized that somehow drinking soda was making me feel worse. And as quickly as I was drinking, my body was ready to offload it. It seemed odd and confusing. The thirst got worse until I was so desperate that I was willing to drink plain water. I can’t stand the stuff. It tastes awful. Drinking it makes me queasy. Mom had tried for years to convince me to drink water. She’d had me try different brands of mineral water and flavored water and everything, and it all just tasted like water and I wouldn’t drink it. So when she saw me rushing to down a glass of my own volition, it set off an alarm bell in her head. As it happened, her father had been type 2 for decades and my father was a pediatrician. She called Dad, and when he got home that night, they had me use a urine test strip, which confirmed Mom’s suspicion.

Mom told me I was diabetic, and I thought “Oh, that’s fine, then. Grandpa’s diabetic and he’s doing great.” It wasn’t until she started crying that I got worried. They drove me to the hospital. The only available bed in the pediatric wing was in the ICU, so I slept next to a kid in a diabetic coma. He refused to treat his diabetes properly and this was at least the third time he’d let his BG get so high that he’d passed out. I thought it was odd that anyone would do that to themselves.

The next day, I got moved to a regular hospital room with a newly diagnosed diabetic roommate. Over the next week, we took classes in the hospital with a group of other young diabetics, learning about BG meters and insulin and giving injections. Meantime, we got to stay in bed and have our meals delivered and family visits and get well gifts. I dubbed it “The Hilton, with doctors.”

Once we were stable and knew what we were doing, they let us go back home, but we met up in the hospital’s teen diabetic support group to keep in touch, learn the latest, swap stories, etc.

I’m pretty lucky. If you’re going to be diagnosed diabetic, it’s hard to imagine an easier or better set of circumstances. (I mean, treatment has come a long way since then. Better insulin, better meters, better pumps, CGMs, etc. So it’s a lot easier now than it was back then. But I still had it good.)