Life With Jenny: Growing up with Type 1 Diabetes

So, there I was. 6 years old, back home after a week of being at the hospital, and my life is completely different. I can't eat the same foods as I'm used to. I can't drink the same drinks as I'm used to. I have to be careful doing activities like I used to because my blood sugar could drop suddenly. School is weird. Everyone is treating me differently - not in a bad way, but in a cautious like overly caring kind of way. Everyone was constantly asking me if I was okay, or if I had checked my blood sugar. Everything was so different. I had to learn so quickly different ways that I felt were indicative of my blood sugar being too high or too low. I do remember that the BD company used to make these orange flavored glucose tablets (maybe they still do? I haven't seen them in years!). They were actually pretty big compared to the glucose tablets that are out there today - they were square and came in a foil pack of 2 or 3. I actually really liked them - which I know is probably weird but I did.

Learning that being really thirsty was a sign of high blood sugar and feeling shaky was a sign of low blood sugar. Both are equally bad and can lead to bad consequences.

Can you just imagine being 6 for a moment? Now imagine having to poke your fingers multiple times a day and take multiple daily injections and not be able to eat the snacks you want and drink the juice just because you want to. It was so much. It was so much to comprehend. It was so much to explain to people - to other 6 year old's. It was just so. much.

For the first couple years after diagnosis, my mom and I spent a lot of time travelling to doctors and specialists appointments. The specialists were about an hours drive away so I'd get to miss some school. Thinking back, I thank God that my mom had her own business at the time. It made it easier for her to take time off to care for me and take me to appointments. I'm so grateful for that.

I remember one time, not long after I was diagnosed, my mom and I were in the car together probably going to work or one of her customer's houses. Mom stopped at the gas station - the family that ran it was the Davenports, so we always called that gas station 'Davenports'. So, mom stopped at Davenports and I was just really, really wanting a Milky Way candy bar. Those were my favorite, but I couldn't have them anymore unless my sugar was low. I thought about how I was feeling and I was like "hmm, I don't think my sugar is high, so maybe if I have a candy bar, it will be okay...?" Mom asked me if I wanted anything before she got out of the car to go into the gas station. I said something along the lines of "I think my sugar is low and I need a Milky Way." I'd known I had forgotten my glucose monitor or "kit" as we called it so when mom asked if I had my kit to check my sugar, I said "no, I forgot it." She sighed, "Jenny Marie, you know you need to have that with you." I acknowledged that I knew that. She went into the gas station and brought me back a Milky Way. I VERY happily ate that candy bar - the WHOLE thing! In my head I was silently asking my blood sugar not to skyrocket. My 6 year old self was so happy - at that moment I didn't care that I lied, I didn't care that I'd most likely have to do an extra shot later because of me wanting this candy. I wanted the candy - my favorite candy - and I was so happy I got it! Now of course, later on, I checked my sugar and surprisingly, it wasn't super high, so maybe I was a little low at the time and I wasn't completely lying. I don't think I ever told my mom that I lied then - I know it's 30 years late, but mom, I'm sorry for lying to you that day!

Growing up and going to school as a type one diabetic back in the early 90s was way different than it is today. There was such little known about type 1 diabetes then that the school nurses usually needed specific guidance from my mom and our doctors so they knew how to treat me when I'd go to them with a blood sugar problem. I remember another time not long after diagnosis, I didn't feel right so I went to the nurses office. I told the nurse I thought my sugar was high - it was - around 220 if I remember correctly. To my surprise, the nurse had me in her office doing jumping jacks for what felt like an eternity because she wanted to try to get my sugar down without having to give me a shot. I *think* she had to call my mom every time she gave me a shot and she didn't want to call my mom - so she had me doing jumping jacks! It didn't last long - I kept quitting after 5 minutes and then I'd start again. Funny part is, after some time doing jumping jacks - while other kids were coming to the nurses office and looking at me like I was C R A Z Y - we checked my sugar again and it had come down! Just under 200, I think 180 or 190. She had me do some more jumping jacks and drink some water, then she sent me back to class.

Middle school was very different than elementary school. It was also very different because we moved from Massachusetts to Florida. That was a huge cultural shock for me. The school I went to was HUGE compared to what I was used to. The population of the school was larger than the population of the town we moved from in Massachusetts! I had started taking care of myself for the most part at this point in my life. I was 11, it had been 5 years. This was my life. Finger pokes, shots, eat this, not that. So I didn't go to the nurse as much in middle school. I thought I was doing okay and then my mom took me to a new doctor who did blood work. Let me tell you, this man called the house (house phones are still a thing at this time, hahaha) and I answered the phone. He asks for me - not my mom - me. He tells me that they got the blood test results back and that my A1C (an average of your blood sugar over the last 3 months) was crazy high. He said it was 13.5 and he literally told me on the phone that if I don't take better care of myself, I am going to die. I was 11. That floored me. I was scared. I started crying because I didn't know what the A1C number meant, but this doctor just told me that I'm going to die. I asked him to hold on so I could go get my mom. I went out to the garage crying and told my mom what happened. She was not a happy camper. I don't remember exactly what she said, but she gave him an earful for making me cry and worry like that. I believe we found another doctor after that but mom also told me the number was really bad and that I needed to pay closer attention to what I was eating. So I did. I tried. It was still so hard though. All my friends got to eat and drink whatever they wanted and nothing bad happened to them. I felt so excluded. I didn't want to be different.

High school was much like middle school in that I really didn't go to the nurses office, I took care of myself, the best I could. I had the highs and lows but nothing too crazy happened with my blood sugars. No hospital stays or anything like that. My high school years were hard due to things going on in our family. I know that God 100% took care of me so that I could be here today to tell you my story.

I am incredibly thankful that with everything I've been through and my tween and teen years of being rebellious and not taking as good of care of myself as I should have, that 30 years after being diagnosed with this disease, I have no diabetic related complications! Recent blood work shows that my kidney and liver function are great and all other tests show that everything else looks good too!

I am unbelievably grateful for all of you who are reading my story and supporting me as I break out of my comfort zone and tell the world about ME. It's scary but it's also exciting and a little exhilarating! Stay tuned for my next blog post this Friday where we will talk about early adulthood, scary things, hospital stays, love, marriage, and my first pregnancy. Until Friday, have a great week!

xoxo - Jenny