Inviting Your Personal Knowledge and Experience of Diabetes

[elisem]

 OK, I said I was going to make a post like this so that I could keep all the useful things people want to share in one place so that I could find it again more easily. Here goes!

1. What do you wish you had known when you were first diagnosed as diabetic?

2. Are there resources you recommend?

3. Do you know resources or practices or inventions that help the neurodivergent diabetic who deals with ADHD? Because this stuff is a challenge when it interlocks, I gotta say.

4. In your first year of being diabetic, what was harder than you expected? What was easier than you expected?

5. How's it going now?

6. What else do you want to tell me?

Comments

[pameladean]

1. I wish I had known that flying into the hyper weight-loss mindset and making a bunch of dietary changes that made me not want to even get up in the morning was not going to work in the long run. I mean, in some sense I did know, but the knowledge did not overcome the panic.

Also I wish I'd known that resisting going on metformin wasn't going to be particularly productive.

And that strength training will, over the loooonnnng run, usually lower blood sugar.

2. Sadly, I don't have any current resources to recommend. I got diabetes education from nurses at HCMC -- they run classes that insurance will pay for, or did then -- and it was helpful to a degree. They were more flexible than I expected and emphasized that everybody is going to establish a routine and then deviate from it, and the trick is to figure out whether you just go back to it or whether it needs altering. Also that you can do everything "right" and the diabetes may still just progress because it is evil that way.

3. I don't have specific information here.

4. Harder: Scheduling and measuring food. We hates it, precious. It is horribly stressful. I had to stop the rigid meal scheduling. It wasn't worth the mental agony. With measuring, you get so that you can eyeball things and just need to adjust periodically.

Easier: Avoiding having to start insulin. There are so many new medications available. I'm taking metformin and tradjenta, and they are keeping me stable. Everyone is different in this regard, though.

5. Okay, I guess. The boilerplate that comes with MyChart test results says you want A1C under 8. My doctor wants it under 7, saying that it's at 7 that neuropathy and retinopathy and other undesirable nonsense starts up. I've been between 6 and 7 and I KNOW that it will go down with more exercise, but ensuring that I get it is almost as stressful as the meal scheduling.

6. You may be familiar with this effect from other conditions, but diabetes attitudes among professionals are a very contradictory mix of "You are in control" and "Diabetes does what it wants." Also the regimen is complex and various requirements conflict with one another. Balancing things out is difficult and can be stressful. I have tried to prioritize fiber, exercise, and remembering medications. Exercise is REALLY HELPFUL and I wish I didn't have as many bad associations with it as I have (thanks, bad gym classes, fatphobia, and other stupid cultural garbage). Even if you did mess up somehow, even intentionally, it doesn't mean you're a bad person or a failure. It means everything is complicated. But I suspect that you know this from other experience.

I hope I'll have more helpful remarks if you have specific issues arising.

[carbonel]

What I want to tell you is that I was just diagnosed with diabetes a week ago. Started on Metformin a couple of days ago. My glucose level is still way too high, alas.

The diabetic educator at HealthPartners was helpful and straightforward.

All sympathies.

[ckd]

(1) More about what I should be doing based on my blood glucose readings (either from the CGM or the finger-stick). How to better do the finger-stick part, which I still haven't gotten the hang of yet.

(4) First month of actual diagnosis, so I can't say much there. I semi-jokingly said that I'm "post-pre-diabetic" - I was hovering right around the 6.5 A1C rating but had high fasting BG readings year after year, which were enough to put me in the diagnosed bucket. (Looking at the A1C numbers, they were below the pre-diabetes threshold until the pandemic...it's as if being stuck at home made me inactive and focused on food as comfort or something.)

(5) Had my one-month followup yesterday. CGM numbers are looking good in that I'm mostly keeping in range (aided by "oof, lunch is really shooting my numbers up - 10 minute walk time!" which has helped blunt the spikes) and we'll see what A1C looks like in a couple more months. The main effect is that I'm using the numbers as a way to be more conscious of my snacking / more likely to not snack unless the number is solidly low and has been for a while. Plus a bit more exercise.

[sine_nomine]

Have a dear friend with diabetes, so I hope a few observations will be helpful:
I have noticed that sleep management and exercise are both very helpful. As in at least 8 hours of sleep per night. I know that may not be possible for you, and I note it is not possible for them during the school year (they are a teacher); their A1c and BG numbers are always noticeably better over summer vacations.

Also always wash your hands before testing (if you are doing the finger stick method). Noticeable differences with unwashed vs washed hands when testing.

Finally, BG monitors seem to be unreliable narrators. Over time, you may be able to get a sense of what is going on by how you are feeling, and that might be helpful to you.

[sraun]

1. What do you wish you had known when you were first diagnosed as diabetic?

2. Are there resources you recommend?

My doctor has been able to get me diabetic education, and diabetic nutrition consultations. The nutritionists have always been 'what do you like to eat? when do you eat?', and then help figure out how to modify our diet to help us control our blood sugars.

3. Do you know resources or practices or inventions that help the neurodivergent diabetic who deals with ADHD? Because this stuff is a challenge when it interlocks, I gotta say.

Irene & I really love our CGMs. We've got Dexcom G7s. They've confirmed things we have individually suspected about our glucose response, but didn't have any proof of.

I suspect have the number right there would be useful for someone who's neurodivergent. Not having to remember where your equipment is and doing a fingerstick should be a win.

Irene has ADHD, and would probably be willing to talk.

The alarm clock function on my phone has been wonderful - I've got alarms for the meds I take once a week. It really helps me get them consistently.

Setting up meds in advance will probably help compliance? We take meds with breakfast and dinner, and a couple of meds weekly. There are so many that I haven't found a good weekly dispenser, but have picked up some tupperware-like things that I use to set up for the next two days.

4. In your first year of being diabetic, what was harder than you expected? What was easier than you expected?

It turned out that, after we took all the sugar Coke I was drinking out of my diet, I was eating a reasonably balanced diet at about the right calories for my weight loss goal. Learning to like diet pop was something of a chore. Keeping a diet with <10% calories from fat turned out to be really easy for me at that time - it might be less so now.

Parties were a trial. All those carb-heavy snacks!

5. How's it going now?

I was diagnosed - 30+ years ago? I managed with diet and exercise for my first ten years or so. Now I'm on several different drugs. Irene & I both need get more exercise regularly. We're running A1C in the low 6s - or were before the Trulicity 4.5 became unavailable. We're still under 7.

6. What else do you want to tell me?

Do what works for you. Don't let anyone else tell you 'you have to do this!' - with the possible exception of your doctor.

[azurelunatic]

1. It takes Time, even with immediate perfect compliance with whatever the doctor wants, to bring daily glucose numbers down. I looked at my numbers when I was absolutely starving and I went "oh holy shit, I'm never going to be able to get to [goal], I will die or eat a leopard's face" and these days I am enough where my primary care wants me that she said I could skip next week's appointment but I said no because my last a1c was due to chemotherapy but I am still at numbers that a non-diabetic would be pleased with.

3. Use a harm reduction mindset when it comes to Not Doing Things Perfectly, instead of a perfectionist one. Craving cake deeeeeeply? Have some fucking cake. Maybe not the entire cake. Definitely not 40 cakes. Try to omit the baked potato on cake days. The old advice about whole grains is, um. If you like whole grains, great? But if you don't like whole grains enough to eat them with pleasure, omit that whole category of food and have cake instead. It's toast PLUS cake that gets you in trouble.
Embrace medication that works for you. FUCK "let's try lifestyle changes first", absolutely fuck that, demand the meds. Do not pay attention to idealized day schedules. I take my "AM" meds after noon, generally, and today I had breakfast after 6 pm because of an appointment for a fasting test. I have come to know exactly how much food I have to eat in order to support each 500 mg of Metformin, and if I cannot eat that much food, I will reduce my dose accordingly. I have also at least once did a dose of Metformin before a large meal and a dose after, and had no problems.
Always have more test strips per month than the multiplier of what you're supposed to be testing, especially at first; you don't want to be in the mindset of rationing your test strips.
I try to have my medication on me at all times. With ADHD, I can only hold one thing at once. This is a problem when there are things that have to be with me at all times. I still don't have a full good solution for this, but I do have a little bag that I try to wear to carry various things with me around the house. Also pockets that I installed in my bras. I try to be consistent about where I keep my meds and test gear; even if I'm not leaving the house, I try to keep my test kit in my going-out bag, which I keep by my desk or where I've been sitting lately. I have a bright tassel of ribbons scavenged from clothing tags tied to the zipper pull, to find the black kit in the dark depths of my bag, and I could consider using an electronic find-me button.
I use a phone program called Medisafe to remind me about my doses. It is shockingly bad but also the least bad of its kind that I have tried.

4. I hate artificial sweetener so much, but I used it transitionally when I had soda cravings.
People say all sorts of things about how hard Metformin is on a digestive system, but I had very few problems with it. Exception: taking 1000 mg before only having a frappucino was a bad idea, and I got low and spacey; I learned to always only take it after haven eaten enough, even if I had the food on my plate. Exception: my doctor wanted me to work towards taking 2000mg at once and I tried it and felt like I'd gotten punched in the entire digestive system and/or eaten something with bell pepper (which I cannot tolerate).

5. Going great! I can eat almost anything I like except for desserts that are made with nearly pure sugar such as fudge or Turkish Delight / Aplets & Cotlets. This is due to both getting my baseline sugar in order, getting enough meds to support the food I eat, and adjusting what I want (the hardest part).