I get up early (and am on the east coast) so I get to answer first!!!!
Diet. I went through education and nutrition classes and was taught the standard diet namely a calorie restricted low fat (and obviously high carb) diet. It was ineffective and I saw little blood sugar control improvement. Fortunately I didn't just trust the "professionals," I started looking on my own and I found Dr. Bernstein's book and the low carb on-line communities. To this day I still find the mainstream diabetes nutrition advice generally unhelpful and disrespectful of low carb.
And since I am first I will answer again.
Diabetes Type. If you walk in the door to your doctor with high blood sugars and you aren't in DKA then you are diagnosed as type 2. I always felt that I deserved a full workup on my type of diabetes. After all the thousands of wasted dollars on really useless cholesterol tests why can't I just have a few tests to help identify my diabetes type? We hear so many stories of misdiagnosed types of diabetes. In the end, after years of requests, I finally did get a basic set of tests. The results were inconclusive. So I remain a "type 2."
ps. It took me a long time to realize type 2 really means diabetes of unknown cause and comes in a wild spectrum of forms. They should really break things into Type 1 and Type unknown.
For me, th emost confusing aspects of being diagnosed is the lack of a definitive answer from medical professionals, who won't admit they don't know. Answers range from you have Type 2 Diabetes due to:
1. bad genetics;
2. steroid usage due to your rheumatoid arthritis;
3. your rheumatoid arthritis;
4. your thyroid disease (Graves Disease) and allergies;
5. your race/ethnicity;
6. your gender / age;
7. we don't know why
Yet, the endocrinologist refuses to (or in his words does not do) antibodies testing to determine LADA (comparable for 1-4 above)--for him the answer is cut and dry--I am Type 2 due to steroid use for the treatment of RA. Yet conventional treatment of diet and exercise is not working and I have serious side effects of Metformin. Solution: Keep taking Metformin and ignore side effects or move on to other pills even if they may have side effects.
Tudiabetes has helped me the most in keeping my sanity in check. The forum has been an anchor for me in discovering that I'm not alone in quest for answers from the medical community.
[Insert Brian's answer verbatim here.]
Brian, thanks for saving me the bother of typing all that. :-)
The most confusing part of being diagnosed with diabetes was the initial misdiagnosis. Because I was in my late-40s and had gone through a brief period of weight gain, my Primary assumed I must be Type 2. I was told to cut down on sugar and it was implied that my developing diabetes was the result of something I had either done or not done. What cleared up the confusion was the tantrum I threw during an educational meeting at the clinic. I refused to believe that if I just ate less and less, I could control my blood sugar, when I was already eating much less than anyone else in the room. Someone listened and I was assigned an endocrinologist who ordered a test for GAD and C-peptide. Turns out I was not Type 2, but LADA. At my next appointment, I was told it wasn't my fault at all, but the result of GAD antibodies attacking my beta cells. Insulin helps me manage my blood sugar.
I realize that this is a forum for how Humana should provide better care for Type 2s, but the first step should be the correct diagnosis. Don't assume someone who left childhood behind long ago must be Type 2. Too many are misdiagnosed. Don't assume that the cause of hyperglycemia is someone doing something wrong or not doing everything right. We don't completely control what our bodies do.
I think one very confusing aspect of being diagnosed with diabetes was the fact that it has no cure. There's no pill or injection or stitch or cast I can get that will get rid of it for good. This was a very humbling notion, because until that point in my life everything I had faced was essentially acute not chronic.
Our entire health care system (from how we train physicians for the most part, to how we deliver care) was built on the basis of acute care. And that model doesn't take the patient as much into account (their central role) when it comes down to the management of chronic conditions like diabetes (type 1, 2, etc.)
Becoming educated about diabetes (initially I was misdiagnosed with type 2) made me realize that what I had had no cure. It was tough to accept, but I had to. Eventually, I was diagnosed with type 1 (as an adult) and started with shots. That sort of helped bring home the notion that "this" was here to stay: I haven't NOT taken shots or boluses of insulin since that day, and that was 11 years ago.
Misdiagnoses are rampant. There are untold thousands of people mistakenly diagnosed as Type 2 (including but not limited to Manny). TuDiabetes has a great many members who are, or were, in that situation.
The problem of misdiagnosis is HUGE and can't be overstated. And it's due to two things, pure and simple: ignorance and laziness.
Back in the day, the traditional wisdom was that Type 1 struck children and Type 2 affected adults, full stop. Today we know that is nonsense, yet far too many doctors, when an adult presents with diabetic symptoms, automatically assume the patient must have Type 2, and don't trouble to run the readily available diagnostic tests to find out.
It is not an inconsequential distinction. The course of treatment typically offered to a Type 2 diabetic will not avail a Type 1 in any useful way. Misdiagnosis means that the patient does not receive the treatment they need.
Getting it wrong through a true mistake is one thing. Given the present state of knowledge, not even bothering to check verges on malpractice.
One of the most confusing aspects of a diabetes diagnosis is all the mixed and conflicting messages one gets. "You didn't cause T2 diabetes, but if you loose 10 lbs it might go away" is central to this dilemna.
It took me a while to figure out that successfully managing life with diabetes is largely a mind game, but our medical system isn't focused on that and doesn't really offer supports to help people in this area.
First there's the whole "learn everything you can" part of dealing with the diagnosis. If the medical provider even addresses this it will be in a very standardized way. There will be canned classes or brochures or go to the ADA website. Rarely does the patient get much, if any, personalized advice when it comes to understanding medication, diet, exercise, or lifestyle management. And there's a tremendous time lag between what the medical system considers best practice and the latest or most innovative medical information available. The low fat diet vs. low carb diet conversation above is an example of this.
Then there's the whole "manage your personal state" thing. No medical provider that I know of integrates any behavioral therapy, stress management, or exercise in their course of diabetes treatment. This despite the fact that it is widely known that depression is common among people living with diabetes and the common misperception that Type 2 diabetes is primarily a lifestyle disease.
The doctor or nurse will say things like "improve your diet," "exercise more," and "don't get stressed." But then they don't offer any help with the how do you do these things. Changing behavior and adopting lifestyle changes is a whole different animal from prescribing and taking medication. This lack of support leaves the patient vulnerable to stress, depression, self-blame, frustration, eating disorders, behavior disorders, etc. I'm not even sure that the medical providers are aware of this linkage and the dire consequences of reducing diabetes treatment to a standard formulary and nothing more.
The confusing part for me was being handed a prescription for some pills and then being told I must change my lifestyle. I'm fully able to swallow some pills but I had no idea how to go about changing my lifestyle. I was told to do it but was given little or no help making the necessary change.
Information found online, particularly information found here on TuDiabetes was what I depended on to clear up the confused state I was in for years.
It's been 20 years, but I don't recall being confused about anything. I was shown how to test (duh), and told to eat their 180 carb diet. Entirely self taught, managed on my own since day two. I also managed insulin myself since day 2 on insulin, 12 years later.
This would have been different for a T1, but ramping up and tweaking the 12 basal rates took about 8 weeks. A t2 often has the time, whereas a t1 is by necessity, thrown into the deep end of the pool (but has help).
When diagnosed I was first nearly killed by a local GP who prescribed the wrong medication. I then went to a specialist in a town 2 hours away who sorted me out. Since I couldn't pop in every five minutes I had to educate myself and learn a lot more physiology than I ever really wanted to know despite being a scientist! It was all very confusing.
For part two of the question - Although my specialist has been helpful I have had to rely very largely on my own resources and I have never been to dietician, podiatrist or educator.
Mmmm. At the risk of just making this a ■■■■■ session about difficulties with doctors:
1. At my diagnosis, my doctor handed me a few brochures full of smiling people, while all I could think about was "I might need my feet amputated." I knew nothing. My Dad was diabetic, but we kids never knew that until after he died. All those stupid brochures told me to do exactly the wrong things. And as I researched and began to take charge myself, I actually had to instruct my doc that as my A1c dropped into the normal range over 6 months, she should give me a pat on the back somehow, as opposed to a simple check mark on my test results. Oh and it was a couple of wonderful pharmacists who taught me how to use a meter, and later how to travel safely.
2. Gretchen Becker's book on the first year of living with T2 was the first thing to clarify and focus my mind on what I needed to do. Within a couple months of finding her, I found TuD, and over time, this became my online home and support network and educational center!....Blessings
Diabetes is very much a do it yourself disease, there are lots of things we can do on our own to make things better. The first step is to educate yourself.
Here is a list of resources I found helpful:
The First Year: Type 2 Diabetes: An Essential Guide for the Newly Diagnosed by Gretchen Becker. A good basic explanation of what is going on and what your options are as regards to treatment. Very evenhanded vis-a-vis diet etc.
BloodSugar101 website. I learned the "eat to your meter system" here. A very simple and effective course of action.
The Art and Science of Low Carbohydrate Living: An Expert Guide to Making the Life-Saving Benefits of Carbohydrate Restriction Sustainable and Enjoyable by Phinney and Volk Great explanations of how and why LCHF works by two researchers in the field.
The Low Carb Dietician blog The author Franziska Spritzler is an RD and CDE. Her blog posts are well written informative and footnoted. She has blood sugar issues of her own and uses LCHF to treat them.
Dr. Bernstein's Diabetes Solution: The Complete Guide to Achieving Normal Blood Sugars by Richard K. Bernstein. This is the low carbers bible.
My list is heavily tilted toward the LCHF approach because that is what has worked best for me. Online forums like tuD are a great resource too, a great place to learn what works for others and debate the pros and cons of various approaches.
+1. both to the low carb approach and those resources you listed. They're all excellent. Bernstein is my bible with Jenny Ruhl a close second, but that's a purely personal preference.
BTW, Jenny Ruhl also has another good book titled Diet 101: The Truth About Low Carb Diets.
My diabetic educators were very helpful. I still have my first book. What I don’t like is when you have to change doctors because of changing health care plans you get s new and different meter. I will have to dig out my book I was 338 this morning
A really interesting point, Mary. Thanks for sharing! (Meghan @ Humana)
Too much information and not knowing where to begin has been overwhelming for me until recently. I'm currently participating in a research project at UVA and my knowledge has increased exponentially.
Being told I must have been eating too much and not exercising enough. Then, a month later, when I was correctly diagnosed with LADA, being told there was nothing I could have done to prevent it. Throwing a fit during one of those T2 educational meetings got them to listen to me, assign me an endocrinologist, and test me for GAD antibodies. They stopped assuming I must be lying about the amount I was eating and started believing me.