When I was diagnosed, I got a barage of information both from books, and my diabetic educator, doctor, nurse practitioner, and support group. I thought I would have a degree in diabetes by the time I was done.
But of course, we all know it’s a continuing process of learning about ourselves, our own diabetes and then what is going on in the world outside ours with diabetic care.
So my question to you is, how much education did you get when you were diagnosed, or say for the first year? How much do you get now? Did you actually visit with a medical team or friends, or get most of your knowledge from the www?
In SD I am appalled at what little education activity there is. I’m not sold on my clinic for anything other than diabetes care…but I can honestly say, I know more than most of the people I know who visit with regular docs, endocrinologists in the area (200 miles away) and diabetic educators because of my clinics and CNP’s dedication to teaching us. So what did you learn, and from where?
Learned most from the web. I went to a diabetes educator for 2 years and then when my mom (who would drive me there and payed attention to what was said) learned everything about the basics she said we had enough and we never went back. I started getting involved with my own care last year Jan. and went to my Dr.s for answers and was told I don’t need to know any of those answers until I get to that problem. I learned to tell how I felt with lows and highs and then a nurse said those weren’t symptoms of diabetes.(headaches, irratible and shakey, just to name afew.)Said I was just freaking out. So I got to the web now. Much more helpful !!!
HB
HB, I basically do the same thing, I’ll dig until I find my answers…and for some that’s just such work. Hey, this is my body, my life, I want to know. I use the web a lot too, but sometimes there are specific question to me, that I need a doc’s help with.
I’ve learned things from the web, various diabetes magazines and my support group. I learn something new all the time, which is great. But I do find myself educating people on diabetes. I’m always floored at how much ignorance is really out there about this disease.
I was diagnosed in the hospital (DKA). Several diabetes educators brought hand-outs about food, carb exchanges & examine your feet daily how-tos. The day I was to be discharged, I didn’t know how to use a glucose meter or give myself injections. Much as I couldn’t wait to go home, I was scared because I didn’t know a thing. I requested a nurse show me the basics of testing & shots. I got a sheet of sliding scale numbers for doses. I didn’t have a clue what this meant & no one explained anything. When I asked questions, I was told to enroll in the hospital’s diabetes ed program (several weeks away) & to ask my doctor. Very helpful!
I was lucky ito have an awesome GP who gave me his private cell & checked in on me daily. After crying from fear, ignorance & frustration, I hit the web, read everything I could & ordered books. I learned a ton here!
Went to the hospital’s diabetic ed program & dropped out after the second class. I was the only Type 1. The classes were useless with plastic food models (gee, I think we all know what a hamburger looks like), everyone was told to lose weight, exercise & the usual ADA food recommendations. The instructors read a book to us page by page, a book we were given ahead to read on our own. There were snacks of high carb granola bars, bananas & diet soda. So much for the nutritional approach:)
Went back to the web & books to learn more. Went to a CDE. She also pushed the ADA diet & told me I wasn’t eating enough carbs. Eat more carbs, take more insulin, don’t worry, be happy. She was a nice woman & encouraging, but I learned more on my own.
Went through two endos my first year until I found one who listened & helped.
Yours is a story I admire. I think more and more we have to advocate for ourselves. IE, the whole thing about women’s health in the last weeks…but even with diabetes, if we don’t ask, look, hunt seek out information, we aren’t going to know anything. I am basically a shy person except when it comes to my health and my family’s health…then I am a bearcat…and the docs all know it. So I admire your persistence, and no one says we have to stick with a doc or clinic just because we have always gone there. Find someone who suits you, not you them. I’ve been to 14 different counselors, until I found the two that have done for me, what I needed to get healthy.
Be persistent, be careful, do it for you! Good going!
I’ve been educating myself for 40 years. I started with books and lots of questions for “every” med professional I could get an ear from. I got lots of dribble from those who claimed to know about “D” But, they knew nothing about T1D. The best education about the reality of D came from those who had first hand knowledge, be it med prof or peer T1D.
Every oportunity I get to learn I try to get somthing out of it, via web, book, mag or human.
There are a few rule I have in testing the credibility of info…
what is the bakground of the source?
what was the motivation of the source (ethics, money, they care …)?
is the information based on sound logic, science, and experience (data, study, research, life, etc.)?
will it benefit me and my diabetes?
Be a sponge, don’t give in, it’s “your” T1D and your life, 24/7!
Diabetic (type 2) for more than 2 years now. Did not know much about it before that. Probably only the basics in college,like the types, the causes, the symptoms… At that time it did not concern at all. Until I was diagnosed. My first teacher (my emergency room doctor) was a disaster. Scared the wits out of me. Then I changed him (immediately!). My next educators are my family. My sister is a physician and my Mom is a dietary nutritionist by professions. Information was much easier to digest since there was concern and love coming from their advise. However, there are certain questions I needed to ask and asking my Mom and sister seems to be a little uncomfortable (plus the fact that they freak out when I ask some things about complications and what if’s)…I turned to reading books and the web. It is more complete and it gives me a more technical and complete or detailed explanation of my conditions. Third, for my own experiences like laboratory blood works results, my doctor provides me a detailed explanation unique to my situation…like the steps I have to do next and the best information on how to manage my diabetes. Last (which is far most interesting) I learn from support groups. Now I tend to compare myself from others and at the same time learn from their own experiences. What I enjoy most is that information never seems to cease! There is always something new to learn each day =)
I think we all have to be our own sponges…as Stephen said. There is so much to know, and knowledge can reduce fear. I have to remember that constantly. I am looking for information all the time, then sift through it and see if it applies to me, or to someone I know who is diabetic, and of course some of it is totally useless and just plain wrong.
Anytime there is anything whether web, books, magazines, people, I will zoom in on it and find out what is what.
I think that’s all we can do. Our physicians unless they are CDE’s or have had much experience with it, can’t always keep up with all that is happening, often, I bring my doc things that I have read, seen or heard. We sift through it together and she files it for her other patients…
It’s a constant learning process about the disease and how our bodies are working with it or against. it.
