Am I the only one who never had any meaningful 'diabetes instruction'?

I read Dr Bernstein's book shortly after my initial T2 misdiagnosis, and then went to the mandatory diabetes classes where they taught me how to use the meter that I had already been using for a week or two. Then they told me to eat way too much sugar.

It nearly took forever to find a doctor to prescribe me insulin when I needed it. The endo I found was in his 70s, and so I ended up teaching myself from videos/books how to inject. Somewhere around then I read a few more books.

After that a diabetes educator (ie a rep) was doing a free educational session, and no one else showed, so she taught me about various pumps, and she may have been the first to tell me that I was probably T1. I guess she was somewhat informative.

Finally, I tried an Omnipod out, and the rep who 'educated' me on that didn't have a particularly good understanding of diabetes, and I was pretty upset over having my time wasted.

I had very good initial instruction because I come from a family of type 1's (there are five of us). But over the years I did not get any good updated diabetes learning. It wasn't until the past year and a half that I actually "caught up" with all the new knowledge, information, and tech; and that was through my own internet studies and sifting through all the misinformation that is out there. Unfortunately there is so much misinformation, and still so much to discover, and there is more money in unhealthy diabetics than in healthy ones, that it is difficult to find good education on it.

For me, Dr. Bernstein's Diabetes Solution is a lifesaver. :)

Ha depends on what you mean by "meaningful."

I don't remember too much of my initial diabetes all. I think because I was 13 they were trying to tell my parents most of it, but my parents kept trying to explain that it was my condition and I was old enough to handle it so they could explain it to me - which they promptly didn't do. I do vaguely remember someone holding up two water bottles with red water in them, one of which had a bunch of beads in it to simulate what fat looks like in the blood stream.

When I first went on the insulin pump shortly thereafter I was showed how to insert it but it was made clear that aside from my I:C ratio with which I was allowed to adjust my dosing, I really wasn't allowed to change anything as that was for the endocrinologists to do. A zillion allergic reactions to infusion sets later (and no further education), I quietly went off the pump and went back to NPH and Humalog with what I "remembered" as my insulin dose.

I was on NPH probably until shortly before college when they put me on lantus, set my dose and then promised to explain to me how to adjust my lantus dose if my activity ever increased. That doctor left my state shortly after that, so the education never happened. My next endo then just put me on levemir because he liked it better and that was that.

Shortly thereafter I tried the pump again and, once again (even though I was now 18) my pump education was "Don't correct until you're 300 and then just take 5u and wait, don't make any changes to anything, here's your I:C" That pump lasted 6 months before I got tired of not having any better control and really no help from anyone. So back to levemir it was. No one mentioned anything at my next appt, so there I coasted.

I changed endos again (not sure why) and he prescribed symlin (i.e. gave me a dosage and said here you go) and gave me the formula which I now know to be my ISF - though, he never explained that and, as smart as I am, it took ages before it clicked and I realized what it was. The symlin lasted a month because 1)the side effects were terrible and 2) he refused to write me a prescription, instead preferring to give me his sample pens he got from the rep.

My next education was the third time I went on the pump (after I got a CGM and self started) and the nurse couldn't keep in her head that I was a type 1 and that I wore my CGM all the time, not just when I was told to. She didn't do many animas starts, so she had to read the instructions and then explain them to me...which I could have done myself - and for some steps needed to do anyway. This time it's worked out much better, but that's mostly because I do a lot of research myself and have taken a much more active role in my self education.

tl;dr I don't think I've had much meaningful instruction either...

I have been seen by leading diabetes researchers/doctors at top institutions, and while some of the docs were great, the quality of diabetes education was often quite poor. I find it kind of mindboggling, frankly. And if those offices did a poor job on the education piece, I can only imagine others’ experiences.

I was educated briefly in the icu, by my endo I think mostly but no one really showed me how to inject with a syringe,just testing and pens, and I figure that out by myself. A dietician came to talk to me about carb counting and there were some videos I was supposed to watch on the tv but I couldn't get the program to work and no one ever came to help me figure it out. I could barely see with 3+ reading glasses at that point anyway. That was on my one day just out of dka in the icu I think after a few complications and I was already laying there with a dvt and other undiagnosed blood clots so it's amazing I was able to keep my sanity much less absorb any of it. Maybe the injection education came in the second stay, I can't remember now. But I remember how hard it was to manage all of it trying to see and feeling so ill and I asked one of my room mates to read the carb labels for me because I couldn't see them even with glasses. My whole experience from the icu to another week in the hospital was like something from the twilight zone, but much worse. I was using a walker for the second stay because I was in so much pain from the dvt. We were allowed to shower there, so I hobbled down the hallway, but on one occasion I stumbled and a nurse came to give me more pain killers. It was such a relieve to be able to shower and to use a real bathroom though. Anyway somehow I managed to learn what to do. My pump training has been good, I was trained by a lady who is type1 who uses the pump. The only problem was she didn't show me how to do the profile changes/add ons so I had to call tandem to figure that out. It's a bit confusing.

There have been some key exceptions to my subpar experiences. My Tandem pump rep was and remains really great. I’ve had some good doctors who took a lot of time, too. What I haven’t really had are good nurse/educator types.

Yeah, Dr B's book was the same for me. I found it within a week of my diagnosis. I'm not on his diet, but I try to stay low carb. Still, I think cutting way back on carbs is a good approach for most newly diagnosed people because it simplifies things. Still, ignoring his system, the book (at least the previous edition) pretty much explains everything aside from pumping.

My son is on the autism spectrum (a neurological difference where it is very hard to get doctors to provide support), so I already had the mindset that I have to be responsible for my own treatment. I'm decent with numbers, so yeah the doctors make recommendations, but then I tweak things.

I'll go for 'not meaningful' there. I think kids get hosed a bit. A lot of schools will make them go to the office/clinic to do everything. One kid I bumped into had to go to the clinic to test. It's nuts.

Needless to say, I'm a fan of self education. There are maybe 5 good books we need to read, and then maybe a couple of websites (aside from this one).


Another book that is highly recommended is "Think Like a Pancreas" by Gary Scheiner. He is well respected in the Diabetes community and he has D as well.

He's been interviewed several times here.

Enjoy and Good Luck

I've got that and "Using Insulin". Need to get "Pumping Insulin" and
"Your Diabetes Science Experiment" when I have time to read them.

speaking of Gary Scheiner, we have him here regularly for live interviews. Here's 12 of the recorded videos

He also does consultations remotely (if you don't live in the Philly area) by Skype and Google hangout. All of his staff are type1, I think. Emily has first hand experience working with him. He was 2014's AADE Educator of the year.

I never had any good instruction until I moved to CA and started going to the head of the diabetes clinic at UC Irvine, Dr. Art Charles. Of course I've had it a LONG time, and learned to do a considerable amount of winging it. last year when I got my Accu-chek Combo, I had the most helpful rep EVER, Nancy Barton (RN, CDE, and D-Mom). she drove a couple of hours twice to make sure I was doing ok.

Being a member here has educated me considerably.

I got zero meaningful education. The nurse practitioner who diagnosed me showed me how to do injections by doing an air shot. The "diabetes education" class that clinics do primarily because they get paid way too much by insurance companies to do them was an absolute waste of time. It was me and five T2s and everything was about nutrition. Almost every time the person running the class would say something, she'd look at me and say, "It'll be different for you, since you're Type 1." Everything I know about managing my disease has been learned through online resources (thank you TuD!!!) and books.

You know, it’s funny. As a kid they never made me take my shots or check my sugar in the office, but in high school they made me go to the office to drink juice if I was low…of all things to be weird about…

I think lots of people have bumpy starts with diabetes but I think its how you as an individual handle it going forward. I made sure I became the expert on my condition!! …Though I do remember the 1st introduction to the ’ experts at the hospital’ when I was diagnosed Type 1 at 7 years old. I remember a very stern doctor saying to me…" If you can’t put that needle in your own stomach you won’t survive if Mum and Dad aren’t around"…It scared me stupid at the time!!

Yes, my trainer was great too, and especially since she has had type 1 since she was 7 so she knew a lot of what I'm going through and said she could never keep herself stable on mdi/levemir etc. either. I just hope this works for me. I'm not sure why she didn't show me the profile add ons, probably because she was worried that I would change them without my doc/cde approving it because I had changed the settings already before I started on insulin. I have to say the tandem help is wonderful too, they have talked me through every problem I've had so far and they have called me back to make sure I was ok too.

I just remembered also yesterday that they did show me how and make me do one of my basal injections with a syringe on my second stay. They were taking care of my basal but I did my meal insulin, bg and corrections on my insistence. I just injected the syringe, didn't fill it, but I remember thinking how can anyone do this. After doing it a few times later at home it wasn't that bad, but I still have trouble with all the lines on the half unit doses sometimes and the lines wear off too. Keeping them in an eyeglass case seems to be working which tu D members suggested doing.

Used to work across the street from UC Irvine. :)