Fighting the Good Fight, even when it’s hard

Yesterday was a bad day. It was the third day in a row that my fibro was causing me to feel horrid but I wanted/needed to go and see my mom, 40 miles away. I decided to suck it up and go, but then something was wrong with the car so I turned around and went home, disappointing my mom. Later, I had one of those moments where I felt I could make a difference in the world of diabetes by responding to comments on Facebook that were untrue and hurtful to people with diabetes, you know: myth busting. It didn’t go well. People are mean and hateful; so quick to poke fun at someone else. Yesterday I felt defeated and wondered why I even try.

There are so many things wrong with our world today, starting with the fact that people find it so easy to spew hate and anger instead of acceptance and kindness. Why is it ok to make jokes about someone’s disease? I recently lost a dear friend to cancer and my nephew is currently going through a bone marrow transplant. Would it be ok for me to make jokes about cancer? Should I sit back and ignore it when someone else makes fun? Hardly. Regardless of what the disease is or how it is contracted, there is no reason to laugh at someone else’s misfortune.

I’ve been told to lighten up. I’ve been accused of not having a sense of humor. I’ve been told that I’m wrong when I say that eating sugar doesn’t cause diabetes of any type. “But eating crap and being fat causes diabetes.” “Diabetes will go away if you’d just eat better.” “It’s ok to say “here comes diabetes” when someone orders a sugary drink. It’s funny!” “People who aren’t willing to take better care of their health deserve what they get.” Over and over I hear these types of remarks. Over and over again I do what I can to right the wrongs and inform the uneducated. Here’s the thing: They don’t care! They don’t want to be educated, they just want to laugh and go about their day.

Why do I do this? Why do I put myself into situations that often cause me grief? My sweet daughter reminded me that I’m not supposed to read the comments. Do not engage. She’s right in that sometimes I need to protect myself and just not go there. But on the other hand, how is this horrible situation ever going to change if no one speaks up? Is it ok to let the bullies win? Is it right that hurtful comments are affecting people and causing them unnecessary pain? I think not. Type 2 diabetes has often been referred to as an epidemic and the medical and scientific communities are clamoring to figure out what to do about it. The more they talk about excess weight and sedentary lifestyles, the more they feed the misinformation and trolls. Yes, a lifestyle of too much of the wrong foods and not enough exercise are risk factors for developing type 2 diabetes. Has anyone every stopped to think that the way people with type 2 diabetes eat isn’t much different than anyone else’s diet? Nope, they assume that we’ve spent our lives eating Twinkies and dozens of donuts… all the time. They just point fingers and laugh.

I know that I’ve covered this very subject many, many times, but yesterday it felt personal. Yesterday I could feel the knife in my back in a way that took my breath away. It’s fucking NOT ok to make jokes about diabetes and even though some days it will be difficult, I will not stop speaking up. I will not cease correcting the uneducated. I will not stop until my last breath because my tribe deserves better. I may not be able to affect much in the way of change but I cannot sit by quietly and let the bullies win. Thanks for “listening” to my rant. I feel better today.

The Importance of Education

Early on in my blog I wrote about what it was like to be diagnosed and how I was shoved out the door without any information or offer of education. I still recall all the range of emotions I went through over the years as I tried to figure out how to live with this disease. I was lucky in that I took the time to educate myself, often taking wrong paths but eventually getting back to the basics and shunning the snake oil. I was lucky, but many are not.

There are too many people who have been diagnosed with type 2 diabetes who remain clueless to the seriousness of this disease, either through ignorance or the desire to hide their heads in the sand. Diabetes is scary but it’s even scarier if we ignore it or fail to adequately understand how important it is to do all we can within our power to tame the beast. Besides the millions of people who have type 2, there are many, many millions who are walking around with elevated blood sugars, often called pre-diabetes. They don’t know they have an issue. They haven’t been tested. Some have received the news but are made to feel that it’s “no big deal. Just watch your sugar.” These people go on their merry way thinking they are “ok” because they are going to cut back on their sugar intake. They continue to eat in an unhealthy manner and probably don’t add exercise to their lives. Who wants to if they don’t “have” to?

Education in relation to type 2 diabetes has been my passion, for lack of a better word. It is something which I feel is sorely lacking and desperately needed. I am often frustrated because I’m just one person and I don’t know what it is I can do to stem the tide of misinformation and apathy. It has always felt like the “powers that be” weren’t doing enough to stress the importance of self-care and were too often hammering home the idea that we just need to lose a bit of weight and it will make ALL the difference in the world! Right. As someone who has been attempting to lose weight since my early 20s after my first son was born, I know that “just lose some weight” is never as easy as it sounds. Diabetes and controlling weight are very complex issues and I’m pleased to see more and more studies being done that say just that.

A couple of things have happened recently that have given me renewed hope; hope that people who CAN make a difference are speaking up. Unfortunately, those people happen to be celebrities, but hear me out. Two celebrities have recently spoken up about their lives with type 2 diabetes. Both have had the disease for decades and both are working with pharmaceutical companies to help educate people about living with type 2 diabetes. I’ve never been a fan of celebrity spokesmen. It gets under my skin when people feel that just because someone is “famous” they know more than Joe Shmoe about any subject, be it illness, religion or politics. However, the reality is that people DO listen to celebrities and if their message is clear and helpful then YAY!

“Dr.” Phil McGraw has teamed up with Astra Zeneca to present a plan to help people live well with type 2 diabetes. It’s called the “On it Movement”. I’m not usually a fan of “rules” and this program has “rules”. However, the rules are worthy. The list includes things like educating yourself, making a plan and finding support. I can get behind that. More recently, actor James Earl Jones has teamed up with Janssen in their type 2 campaign called “I can Imagine”.

Let’s be honest: both of these programs are designed to sell you a drug to possibly help you control your diabetes. You may decide that their medication sounds good and you might discuss it with your doctor. I’m not posting about these to encourage you to do that or to even support these medications. I’m not a doctor. There should be ongoing conversation between you and your HCP to determine what medication/lifestyle changes will work best for you and your diabetes. I think it’s important to cut the pharma companies some slack. If they don’t make money, then there won’t be any further innovations in our care. (I’m not going to discuss how often it seems as if they make TOO much money. That’s not my point here.)

Earlier I mentioned that I was more hopeful and here’s why: Lots of people watch the Dr. Phil show and if he’s talking about type 2 diabetes and how difficult it can be to live with it, discussing the emotional/mental side of our battle, then that’s an opportunity to encourage people to step up and do something about their health. James Earl Jones is a beloved actor who just happens to be the voice of Darth Vadar. That dude is serious! We’d better listen! Regardless of how you or I may feel about celebrity spokesmen, these men have a distinct opportunity to make a difference in the lives of millions of people. If their message stays clear and they don’t push the medication too forcefully, people may just learn something. That gives me hope.

One more thing: The Diabetes Prevention Program. A study was done that eventually teamed up with the YMCA that went about teaching people how to make lifestyle changes to keep type 2 diabetes at bay. These people had been identified as having pre-diabetes. The program includes dietary changes and added exercise and it worked.  People were able to have some control over their rising blood sugar levels and stave off full-blown type 2 diabetes. The federal government took notice and now Medicare has said that they will pay for people to participate in the Diabetes Prevention Program. I think that’s pretty huge.

Let me say right here that I do not agree with a lot of the dietary changes that the DPP pushes. There are way too much carbohydrates suggested, IMHO. I have learned, and many people with diabetes would agree, that lowering our carbohydrate level is imperative to attempt to control blood sugar. However, as I’ve said ad-naseum, I’m not a doctor nor a nutritionist nor a CDE. I’m just a patient who has learned what works for me. It’s going to take a long, long time for the “establishment” to get on board with what science has shown to be the best way to eat. In the meantime, think about this: dietary changes aren’t made overnight. People often do better when they ooze into them. Here is a quote from a previous post I did on this very subject:

The reality is that some people who are newly diagnosed have been used to eating upwards of 200 grams of carbohydrates per meal and the idea that they can miraculously reduce that carb intake to 35 grams is ludicrous at best. 

Let’s look at a typical trip to McDonald’s.  Big Mac – 46 gr carbs, large fries – 63 gr of carbs and a large Coke – 86 = 195 grams of carbs.  (information from their website) Wow.  (We aren’t even going to discuss fat and sodium.)  This meal is consumed by an awful lot of people in this country on a regular basis.  Now, compare that to a recommended meal for someone with diabetes.  3 oz. 90%-lean hamburger patty, 1 cup 1% milk – 12.2 gr carbs, 1 whole-wheat roll – 21 gr carbs , 1 cup prepared coleslaw – 15 gr carbs = 48.2 grams of carbs. (approximations by Kate) 195 vs 48.  Enlightening no?  I wouldn’t eat that recommended diabetes meal now.  I’d lose the roll and (add a lot more fat).  But that’s me and I didn’t get here overnight!

The DPP may not be perfect, but it’s a start. I applaud the “powers that be” for trying to get the message out there that poor diet and being sedentary are causing us to become unhealthy. A scenario of fast food and couch surfing can increase your chances of developing type 2 diabetes. They don’t cause it, but they increase your risk. That’s an important message that this program can deliver to millions of older Americans; those people who are at greater risk of developing type 2 due to their age.

Do I wish that people would listen to Joe Shmoe instead of celebrities? Yes. Do I wish that the idea of low(er) carb would find its way into the minds of those who are teaching people with diabetes? Yup. But in the meantime, I have hope that these types of programs will cause the masses to pay better attention and bring the severity of type 2 diabetes to the forefront and, hopefully, remove some of the stigma. Heck, if James Earl Jones and Tom Hanks have type 2 and they’re cool dudes, then maybe people will think twice before condemning the rest of us for just being normal folks who happen to have type 2 diabetes.