From injections to an insulin pump to storm chasing for in the plains for 10 days.
Let's start with some basics:
I was diagnosed at age 6 (1st grade)
I got my first insulin pump at 14 (8th grade)
After stubbornly refusing for...so many years, I got a continuous glucose monitor at 25 (I think).
I use a Medtronic 780g currently and the associated glucose sensor
I have a massive fear of going low, especially when alone or asleep
I love candy and I won't even hide it.
I'm not a perfect diabetic, I never have been and probably never will be.
I just want to share my story because sometimes people just need to see it will be okay and that even though sometimes its hard (and trust me it is) there are always some positives that can come from it.
The Beginning
To be completely honest, I don't remember what it was like when I wasn't diabetic. I'm sure that at six it was shock and I'm sure I was a little brat about it but now I have no clue what it was like to not have to test before eating, count the carbs, and give myself insulin.
In the same sense though, I also don't remember too many times where I was told 'no' because of diabetes. Now, I'm not saying my parents weren't responsible. My mom is also a Type 1 and there was already a familiarity when I was diagnosed. But when it came to having a snack or attending a party or things like that, I don't remember too many times that I would be told I couldn't. There might need to be accommodations, like my mom stopping by to give me a shot or for school field trips always having my best friend as my 'buddy' or roommate because she knew my signs of being low and wasn't freaked out by needles. As much as I wasn't treated differently, at least in the sense a six to eleven year old would know, I felt different at times. I would need to go to the nurse if I felt off, I had to stop there before school lunches to make sure my sugars were OK, maybe I'd have to take it a little easier during gym class or recess but overall I did a lot.
I started playing tennis at six and soccer at twelve, I continued to play both of those (sometimes at the same time of year) through high school. I went to sleepovers, had dinner with friends, did what I needed and allowed it to be done easier once I had a pump. There was a freedom when I was introduced to the pump, even if I still had to test, my insulin was there with me, all the time. I could adjust what needed to be adjusted, and it was just there, my little buddy on my hip. But that doesn't always mean it was easy, it meant I had a responsibility, that sometimes I tried to avoid.
A Teenage Diabetic Nightmare
I would be curious to know how many teens with diabetes go through this. The process of realizing you are now more responsible for yourself, but also realizing that its just a lot of pressure. You start attending appointments without your parents, answering questions on your own, spending time outside of your house more, but there is still this...disease you have to control, and you can barely keep your emotions together.
Being a teenager is wild for anyone going through it, and even more fun to think about once you are in your twenties and realize you were a disaster of a human. You don't want to listen to your parents, your teachers or your doctors. It seems to be more fun to say no or ignore them then to follow the rules. That means forgetting to test or just wildly giving yourself insulin without fully counting, or in my case, just never giving myself insulin at all because it took time and at times I hated pulling out my pump and letting the world see it. Finding dresses for dances sucked, having to either have shorts on underneath or find somewhere to clip this pager-like rectangle that would still be showing no matter what you did. Now at 30, I'm not shocked I would fight back when my doctor would suggest a CGM...I didn't want anyone to see my pump, I doubt I would want to wear something obvious on my arm. I'm glad I moved past that phase because hiding my pump all the time got tedious and even worse when I needed to keep it on for sports and just didn't know how to handle it.
There is something to be said about trying to navigate the teenage world full of judgement and trying to find out how you feel about yourself when you have a machine connected to you pretty much all the time.
College and Beyond
College was when I started to take more and more responsibility for myself. I wanted to prove I could keep myself healthy and enjoy the parts of college others did. I'm not a big drinker, hell I don't drink at all now, but I tried to see what I would feel and what it did. I also learned the importance of having people I could trust around me, those who could figure out the signs of me being 'off' and knew what I needed to help. The amount of soda or juice I've randomly drunk out of people's fridges during times of distress is probably pretty high. This learning to trust myself and having my parents trust me meant I got to go on adventures I couldn't imagine. I went on two 10 day long storm chases, plus a few day chases, sure I had to pack a bit extra and definitely had more snacks than everyone else, but I had a blast.
It also meant that when 5 days after graduating college I was moving to North Dakota for 3 months there was only mild parental concern. Mostly because getting supplies delivered in the middle of nowhere is definitely different than the quick service when you are just outside of Chicago. I had to be more on top of counting supplies and ordering ahead of time and having what I needed for the weird hours I worked. Then when the 3 months were over I ended up where I am now, in Minnesota, still far from home but much closer to actually civilization. My supplies are easier to get and it took until recently for me to not be overrun with supplies.
But moving into a new community meant learning to trust new people, who would I let in, who would I need to tell? I couldn't keep it to myself all the time, especially after getting a much more vocal insulin pump in the Medtronic 630g then eventually the 770g and now 780g. You lose sensor signal for long enough and that thing sings the song of it's people. Slowly, I've become more open with Diabetes and how it impacts my work. Twelve hour shifts are long, and when in the office I come in armed and ready with food, back up supplies and my test kit (which doesn't make many appearances anymore). I know where there is pop in the office, just in case, and have asked coworkers before for help when I know it would be hard to get there and back.
I have also learned to be more open on the days where Diabetes just...sucks. Which happens. Talking through feeling off or struggling being tired because my blood sugars have been off. I've also grown more comfortable when telling people I'm just frustrated with it for the day, my sensor is being wonky, my head hurts, or those fun times where I don't want to eat but I HAVE to. It's been a learning curve to learn who I can trust with some info and who I would rather just not get into deep conversations about it. Minnesota also lead me to connecting to other people with Diabetes, participating in the JDRF One Walk and finding others to talk with, which has been really fun.
Overall, its been an adventure and I definitely have more in depth stories to tell throughout the month. I am not a perfect Diabetic, and honestly I don't believe those exist. As long as I am healthy and can continue living how I want, I think I'm doing a pretty good job.
Do you have any questions about my crazy adventures? How I storm chased? Where is the most random place my sugars have been wonky?
Ask in the form here:
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