My Rebellion

Type 1 and LADA
1

I used to think that my teenage years were unique. People would talk about their rebellious teenage years and how they stopped managing diabetes for months/years. Most of these people seem to regret this time period, and some even have complications from it.

BUT After a random realization in the shower today, I DID have a rebellious period! Just it was exactly opposite of the above paragraph. It started when I was first going into high school. I took over all of my diabetes management, but my parent had no idea! They would tell me to take 4 units, and I would take 5. They would tell me to check my bloodsugar. I would, but if the reading was high, I would say something like "Its 180" Even if the real reading was in the 300s. I would then take a correction for the high bloodsugar along with my meal bolus, and my parents never figured it out. I even did it to the school nurse!

Was my control any better than if I just listened to my parents and not lied? I have no idea. There was a nice 5 year gap where I didn't get an A1c test. But I'm kind of glad I did it.

The biggest rebellion I think I ever did was 3 years ago when I changed my lantus dose from a large night time dose to a split dose. I had no doctor backing me up (but I did have yall, so thanks), and I didn't dare tell my parents. This was probably extremely reckless and dangerous, but I guess it all worked out in the end.

If anyone is interested in that conversation, here ya go https://forum.tudiabetes.org/topics/why-i-hate-lantus

Has anyone else ever gone through a rebellion phase like mine where I took control in secret? Or am I the only one?

2

Your rebellion is painted with shades of taking responsibility. Good for you! That was likely the goal of your parents all along. Diabetes doesn't work as well when the party assuming responsibility is not the one with diabetes.

I can't even begin to see how parents of young children call the blood sugar decisions when they can't feel anything. It amazes me.

I am so lucky I wasn't diagnosed until I was 300. My teenage years, if I had D back then, would have been hard. I'm sure I would've had more than a few trips to the ER.

Congrats on taking the driver's seat sooner than your parents may have realized!

3

I had already entered a very mild rebellious phase when I was dx'ed. I was into punk rock, metal, etc., in a very suburban way. Needles fit right in. I was a junior in high school and went off to college which was also handy as the student health center recognized that positive outcomes could be leveraged with more test strips, which started that. In 1985, 7 strips per day was nutso but I didn't think of it as a chore, I took it as a license to rock and roll all night and party every day. If it's 2:00 AM, have a shot, finish the keg and go to Steak and Shake or whatever. Maybe another shot. I had two strobe lights in my room and a giant street sign to burn things on. It's amazing no one was seriously injured, although I ripped half of my ear off in a crash bicycling to go watch the sunrise after a night of partying, nothing crazy, just going fast and lost it on gravel.

None of this involved doctors, I was just winging it. That pretty much went on until maybe 2003, I had a doctor visit every 5 years or so, relied on Walgreens to get RX's refilled, etc. This worked out ok but, eventually, I decided I was 35 and ought to regularize things. I found a good GP who was always proactive with suggesting switching from R/NPH to Lantus Levemir, "maybe you want a pump". At the first appointmnet I had with him, he was quite surprised that my A1C turned out to be 5.8. He was very patient and non-judgmental but always was sort of like "here's what most people do, I can't really suggest anything without more data, logs, etc. but I agree you're doing well" but really, I wasn't doing as well as I could be.

I also got pump recommendations from a buddy who was selling them who, perhaps interestingly, was involved with selling Ed Damiano (the AP guy...) and his wife, who was my daughter's pediatrician, a pump for their son. I was always resistant because I knew what I was doing. I don't think I had too many suggestions to take more or less because I never really brought logs or kept any records which would make suggestions somewhat challenging.

Eventually, in 2008, when I was 40, I got a pump and it wa slike a light went on. Everything fell into place and I got pretty good results quickly and was able to improve them through fine tuning. I still am not a very good patient. I rely oon my pump for all data but am always bolusing for 10 missed carbs here and turning my basal down there to cover for things that are a bit out of whack. I don't really get many suggestions from doctors. The last big hypo I had, 2 days after I saw the doc, the nurse (who never explained if she was an "ordinary" nurse or CDE or whatever...) called and said the doc suggested turning my basal rate down but I had already done that anyway so it was sort of droll.

4

Taking over responsibility for diabetes can be tricky. When I was diagnosed I had NO diabetes education (my parents got it all) so when I took over in my late teens I really had no idea what I was doing. I felt like I had to learn everything from scratch. (I was delayed a bit in taking over responsibility because, until I was introduced to insulin pens that had a tactile click for each unit measured when I was 16 or so, I couldn't see the syringe well enough - even with a magnifier - to independently measure my own insulin.) There was a period where my parents and I shared the decision making. When I first completely took over I went through a mild rebellion in my late teens and early 20s. I was in university and always took my insulin and tested 2-3x per day (not horrible for 10+ years ago before Lantus), but I didn't always stick to a schedule or stick to my meal plan, which was crucial for control at the time. Soon I actually became interested in trying to control my blood sugar and asked my doctor for Lantus, then a pump, and the only other period of "rebellion" since was a six-month period of extreme burnout that happened a few years ago. My teenage and young adult rebellion seems pretty mild compared to stories I hear from others - not testing at all or skipping insulin - and I think my problem was as much the fact that I had no real idea what I was doing as it was "not caring" about good control.

5

300 years old??! Make that 30.

6

Haha, I don't believe you. I think you just blew your cover of being immortal :p

I hope my future children don't have D. I would drive myself (and them) crazy. Its especially difficult on children because of their extremely high insulin sensitivity. 1 unit can turn a 250 into a 45. Combine that with recess or gym class, and ugh! haha

7

I still wish I could get a pump, but its still going to be a while before I can get a real job and pay for one myself.

But i completely see where you are coming from when it comes to doctors. My discussions with them are never "Lower your basal by 3 units and call me in 2 weeks" they are something more like "It looks like you might want to lower your basal in the morning. You know your doses better than I do, so I can't tell you an exact amount."

I also never log unless I start seeing real problems, so if I ever have numbers for my doc they are all out of whack. Then I get an A1c in the low 6s and they are very surprised! lol

8

I've never done "no testing" or "skipping doses" since my rebellious acts were linked to partying which involved carbs (beer), although I had no concept of X carbs/ beer or anything like that. I wanted to keep rolling. I never passed out while I was partying, except from partying. All of the massive hypos were the day after. To get a pump, I had to log for a month and was like "no way, I'll just make it up but when I tried, it was harder to make up realistic fake numbers than just write down what was going on"

9

I was diagnosed as an adult. I guess my rebellion came in the guise of ditching my endo, totally stopped listening to his advice [though I could sarcastically say that it wasn't really 'advice' and he never did any sort of monitoring of anything at all], educated myself and decided my own selection of medications and dosing regime.... without his help!! I switched from mixed insulin (70-30) to basal-bolus regime (using humalin-N and Humalog), and now to levemir/aphidra.

Haven't seen that endo for more than 2 1/2 years now.

I now see a great GP who doesn't pretend to manage my diabetes for me (that is my job), but does want to know what I am doing and why (always good to have a dr knowing my treatment in case something happens / an accident/ unrelated illness, etc) but he just monitors what I am doing (pats me on the back for my success), and reminds me when I need to do other regular monitoring stuff and then runs though it and makes sure all is looking as it should be.