This past January marks 20 years with type 1 diabetes. I still don’t think of it as something I’ve had so long and now I’m at a point where I’ve had it longer than I haven’t. It’s like a Kylie Jenner aged disease for me now. It’s old enough to have it’s own lip kits and fake butt.

I’ve written about my diabetes on this blog before but I guess now I’m feeling more reflective on this time rather than satirical (I know you can’t tell but I spelled that right on the first try) and I wanted to share.

 

My diagnosis

It was January of 1999 and I was almost 10. I was in the 4th grade and my teacher was concerned about me. I was very thirsty and urinating a lot and tired af (sounds like yours truly). I wasn’t too sick like some kids get before they get diagnosed and I think my parents could see the symptoms in me pretty quickly. My dad took me the doctor and I don’t remember much else, I don’t remember crying or missing much school. Since I wasn’t that sick at diagnosis and my parents were educated I didn’t have to do a hospital stay. It just happened and that was that. There is still an infamous video in the Dine house called “It’s Time To Learn About Diabetes”. It was very cheesy and 80s but honestly a decent explanation.

I do remember getting a card in the mail from my friend Danny’s mom saying she was sorry this happened and she was here for me and was comfortable giving shots if I was at their house. This was very touching to me and I still think of it sometimes as a different parent had expressed not wanting me over until I was more stable leaving me to feel very punished.

I had to have a whole game plan with my 4th grade teacher Ms. Zimkowski who wasn’t a very approachable older woman. I didn’t love that she was my first line of defense when I needed help but she did her duty despite being a little cold. Also because I shared a room with my brother at the time and he was already diabetic I couldn’t understand how he didn’t just give me diabetes like the common cold and I was paranoid my parents wouldn’t tell me he was the cause to keep us from fighting.

 

My mom’s role

I think about this a lot now that I work in healthcare and have worked overnights I’ve been in those shoes. This poor lady had to get up in the night and check my blood sugar while I probably whined about being poked. She also coordinated all of my care, my doctors appointments, my medical suppliers, any trips I took. Now that I do that all myself I’m very grateful for all she did. If I ever wanted to do something like go to a regular camp (not a diabetic camp, oh yeah it’s a thing) or play a sport she never acted like I couldn’t. I think that was a major contribution to me not feeling very sorry for myself about my diabetes.

 

Other diabetics 

Whenever I see another person with an insulin pump or meet someone else with diabetes it is a sort of a non verbal comradery. I remember a girl I went to high school with got diagnosed near the end of school (I can’t say who now because of my current life I have to care about HIPPA and shit) and although we had known each other pretty well I wouldn’t say we were very close. Upon her diagnosis she got pretty ill and I did feel compelled to visit her in the hospital. Diabetics supporting other diabetics. I remember bringing diet coke (it might have been Pepsi One because that was my drink of choice for many years, fun fact, right?) and some magazines and pretty much being like “it’s not that fun but enjoy this drink and you’ll have to pretend that syringes don’t hurt but they kinda hurt.” and I felt much closer to her after sharing this part of our lives.

 

Getting my pump 

Many of you know me as somebody who has an insulin pump because it’s such a physical representation of diabetes but the first few years I didn’t have one. They weren’t as mainstream for treatment. I would do syringes for all of my care and when I got a pump in 2001 it was a big fucking deal. I wouldn’t have to do shots anymore and I had a lot more freedom in my food choices. I had to wear one filled with just saline for just a month to “test drive” it and prove I was responsible. I had to go to classes with my mom with this horrible diabetes educator. Even my high road mother was annoyed with her. It was a big undertaking and a total game changer. I still remember one video which gave me advice on how to handle the pump for “intimate moments”

 

Bike and Builders

Travel is hard enough with diabetes. When I did Bike&Build back in 2015 (and 2016 to some extent too) those guys saw my diabetes at it’s peak. I’ve never felt more diabetic in my adult life.  All of the physical exertion pushed my body to its limit and I was low and high (emotionally, from an altitude stand point, and blood sugar wise). I was never in a situation where I had to acknowledge and talk about my diabetes so much and I feel more comfortable with that push.

 

Halloween

You would think it would be a diabetic bummer, and you know what it? It kind of is. My mom tried real hard to not limit me with my candy but I think she didn’t want the consequences of a super high blood sugar. I think she usually would dole out mine and my sister’s in intervals to be fair. Sorry Mary but delayed gratification is probably good for all of us.

 

Beau

I think about my brother a lot. Beau was already diagnosed with Type 1 diabetes when I was born and probably had his diagnosis for like 4 years at this point. By the time I was diagnosed the Dines had already been dealing with diabetes in the house for the past 13 years.  Despite our age difference diabetes has always been a way to anchor us together as we are the only ones in the family who have it. We’ve shared supplies and war stories.

The other thing when it comes to Beau is I think I wouldn’t have been so mellow at diagnosis if it hadn’t been for him. They told me I had a diabetes and I was just like “oh that thing the other guy in the bunk bed has?” I didn’t feel like I was worried my life would change because I observed Beau my whole life and he was just a regular kid who played little league and sometimes set an occasional fire. I was like oh I’ll be fine.

 

Working in a hospital 

I’ve been working in a hospital the last 3 years and I see a lot of complications from diabetics. Amputations, dialysis, stroke, neuropathy and I won’t lie; it stresses me out. It’s one thing to endlessly hear about complications it’s another to treat them. It makes me want to better myself.

 

Friends with school nurses

Oh yeah, old lady school nurses were my jam. I would walk into their office everyday at lunch just to check my blood sugar and be doted on. Nurse P in middle school even posted a copy of poem I wrote right in her office so every sick kid knew what I laureate I was. That thing was there the entire time I was in junior high.

Also I feel like now that a significant time has passed since junior (just shy of a Kylie Jenner) I can admit that my older sister Sam wrote that poem and I’ve been stealing credit for this entire millennium. Confession is good for the soul.

 

Diabetic Camp 

It’s out there and it’s potentially great. My brother was a big fan and I  had been going to a regular summer camp before my diagnosis but my mom wanted me to try this one. Camp Midacha, was a YMCA camp that sponsored a diabetic week over on the east side of the state. For the most part it was normal except you had a colored bracelet that indicated your meal plan, a lot of nurses were around and all of the counselors had fanny packs filled with low blood sugar solutions. There was a “Diabetic Disco” at the end of the week and I went with my camp girlfriend Beth (that’s a whole other blog post)

I only went the one year, I liked having a counselor who knew how to deal with me and be approachable but my usual camp did have great nurses who watched me closely (and I was buddies with them too, I remember your sassy ass Nurse Becky). It wasn’t in my nature to draw so much attention to my disease and it’s all anybody wanted to talk about at Camp Midacha.

I do remember there was this kid Brandon who had an insulin pump and this was before they were so universal and when we were all talking about girls he made a crude joke using pump as a double entendre which for an 11 year old I was still impressed.

 

TV and Diabetes 

I’m not on some soap box saying we need more representation because while type 2 diabetes is growing (they are different and if you want to stay friends with me google the differences) type 1 isn’t that big of a population. I still always wanted like a strong protagonist or decent secondary character who was diabetic. Not a defining trait of the media like Julia Roberts in Steel Magnolias where the main thing about the character is that she is diabetic. We do have Nick Jonas and he has been pretty open to being a good diabetic role model which I’m a fan. I see his face a lot on pamphlets in my doctors office.The other main person in my mind is Stacey from the Babysitters Club who lets be real was a pretty great example. A lot of her story lines did involve her diabetes but I wouldn’t say it was a defining trait and she a lot of other stuff going on. I’m sure there are all small characters that I don’t know about but it would be cool to be like “Jughead and Betty are so cute and he needs to count his carbs to stay alive”