Good morning! Here are two important topics about diabetes that other friends posted this morning.
First, Mike H at Diabetes Mine posted about acknowledging that diabetes isn’t the end of the world. One of the things that has turned me off about the online diabetes community is a tendency to – well, to really appear self pitying. The thing is, we all become a little focused on our own particular medical problems and to view Diabetes or Parkinson’s or Alzheimer’s or Breast Cancer as the most important medical issue out there. That’s understandable, whatever is happening in our own lives feels more important than the things we don’t know about first hand. But it also leads to screaming matches about “all that money being spent on disease X” when it really should be spent on disease Y. Acknowledging that having diabetes, although difficult to live with and having the potential for serious complications, is luckier than some other things that people have to deal with is a good thing, in my opinion. It doesn’t diminish how hard having diabetes is, it just admits that I’m lucky I have a condition that I can manage and probably have a relatively healthy and happy life.
Second, Kerri Sparling at Six Until Me wrote about adults with type 1 being wrongly diagnosed as type 2. This is an important topic for several reasons. First, of course, because primary care physicians really should be certain whether a person has type 1 or type 2 diabetes, but also because there needs to be a much higher standard of care of all diagnoses of diabetes. Adults diagnosed with type 2 are often given little or no information, not taught to monitor their blood sugars, often not referred to a CDE and almost certainly not referred to an endocrinologist.
When I was diagnosed, I was on my own trying to find information about diabetes. All I really knew was that my grandmother had died about 18 months after she was diagnosed. I knew there was such a thing as food “exchanges” and had a fair idea of what that was about from years of dieting. My doctor at least gave me a glucometer but he didn’t teach me how to use it properly in order to help manage my blood sugars. He didn’t refer me to a diabetes educator or nutritionist. He didn’t tell me what I should or shouldn’t eat or what to do when my blood sugar was high or low. He did send me over to county health to get a flu shot and a pneumonia shot.
I spent several hours in our local bookstore looking at different books about diabetes. Some were very technical and some promised “cures” if I followed their diet. Diabetes for Dummies was my first decent source of information and led me to finding the diabetes support group in our community and finding out about certified diabetes educators. I had to plead with my doctor to get a referral for the CDE but I finally got information about how to balance carbohydrates and plan my eating, etc. My dad was diagnosed a few months later and his doctor gave him some pills and told him not to eat white bread. He didn’t even give him a glucometer.
If you happen to keep up with diabetes news, you will often run into articles about how people with type 2 don’t manage their diet correctly and don’t seem to take their diabetes seriously. The articles are generally slanted, in my experience, toward how bad and noncompliant those people are. The truth is, in my opinion, primary care doctors don’t take the diagnosis seriously. People with type 2 can indeed get away with a lot more than their insulin shooting cousins with type 1. The medical community seems to want to wait until type 2 is out of control to do much more than to throw pills at it. It really, really frustrates me.
We all need to be our own advocates whether we have type 1 or type 2 diabetes. Even my quite wonderful and greatly appreciated endocrinologist left me hanging when I started insulin. He prescribed a very simple sliding scale for the insulin that was based only on what my blood sugar was before meals. I am lucky enough to have hung out with people with type 1 for years so I knew about corrections and carb ratios and I insisted on a referral to the CDE to learn how to use them to manage my sugars. My blood sugar is coming down and, interestingly, seems to be much less reactive than it was a few months ago. I’m lucky.
I’m lucky that I have a condition that has good tools to help me manage it. It wasn’t very long ago that there really weren’t decent tools for managing diabetes. There wasn’t such a thing as a home glucometer and there was nothing but insulin and food exchanges to help the person with diabetes get things under control. I’m lucky to have these tools and have a much better probability of delaying or not having at all serious complications. I’m lucky that I got involved with diabetes support groups early on and learned a lot about the treatment and risks. I’m lucky that even during my times of denial, I’ve had good supportive people behind me. And I’m lucky that I learned to advocate for myself and get the referrals I needed to help me manage my diabetes.
And yes, I also feel very lucky that diabetes is a whole lot easier to live with than many other diseases and conditions. That doesn’t mean that I like it. It doesn’t mean that it’s not serious and hard. But it’s a whole lot better than some things that other people are dealing with.