Advocacy | The Girl with the Portable Pancreas

Diabetes. Everyone has heard of it. I’m pretty sure anyway. But not everyone knows the facts about it. Those of us living with it or who cares for someone living with type 1 diabetes know it all too well. Some of us who were diagnosed at an age young enough, only know life with diabetes. Some people remember life without it. Either way, all our lives changed dramatically at one point. Some of us use an insulin pump to dose our insulin. Some use multiple daily injections. Either way, we all need insulin to live. Some of us test our blood glucose levels 10+ times a day. Some test fewer times. Either way, we all need a glucose meter to live. Some of us SWAG (scientific wild ass guess) when it comes to carbohydrate counting. Some weigh every little bit of food. Either way, we all need to know the carbs in what we’re eating to live. Some of us rely on juice boxes, even as adults, to bring our blood sugars up. Some rely on candy or glucose tablets. Either way, we all need that sugar to live in those moments. Our diabetes may vary, but the necessities are the same. The lives of people living with diabetes are dependent on so many different things. And not everyone knows that. There are so many variables that can affect one’s blood sugar – not just food. And not everyone knows that. We can do everything by “the book” and still get undesirable results. And not everyone knows that.

Today on World Diabetes Day, the birthday of Frederick Banting who, along with Charles Best, first conceived the idea which led to the discovery of insulin in 1922, all of the diabetes online community are getting the word out. About how crucial it is to act on diabetes. But if you’re outside of the community and you haven’t heard a lot about diabetes, listen up. Or if you’re tired of hearing about diabetes, don’t be. The facts are astounding but the true stories are even more. You would want there to be much focus and awareness about it if you or a loved one were living with it. Trust me.

The Empire State Building is going to be lit blue and white tonight in honor of World Diabetes Day. I’m going to try and grab some pictures tonight!

**Update** I went to the Empire State Building on my way home from work last night to get a view of the blue lights. To my dismay, they were not blue at all. The schedule was changed in memory of Evelyn Lauder who was a strong part of the pink ribbon breast cancer awareness campaign. While I find a tribute to her significant, I did not find it important enough to change the lights from the planned blue to pink. I think they could have changed the scheduled blue today for the Mary Poppins Broadway anniversary instead of changing yesterday. Someone has their awareness priorities mixed up and was very disappointing.

Last week in conjunction with the start of National Diabetes Awareness Month, the launch of their new logo and their new T1Day, JDRF posted this ad in both the New York Times and Washington Post. I personally did not see the ad in either paper but on the JDRF’s Facebook page. Well, this has caused quite the stir around the diabetes online community. I wasn’t going to write anything about it but instead step back and lurk at what people had to say. However while reading through the very long thread over at Children with Diabetes, it got me thinking.

When I was diagnosed back in 1981 my family was told that a cure was around 10 years away. As of today, I have been living with type 1 diabetes for 29 years, 10 months and 14 days. My father lived with it for over 30 years before complications took his life, both figuratively and literally. Call me pessimistic, but I do not foresee a real cure in my lifetime. I’ve come to accept that I will live with diabetes for the rest of my life. But that doesn’t mean I still don’t have some hope for a cure. Since I believe a cure is not in the predictable future, what I ~~would like~~ need now is for the diabetes management tools to continue to improve to help me and other people living with diabetes do just that. Live. But healthy. Safely. Enduringly.

There are many things that can go wrong in the life of a diabetic. On both ends of the BG spectrum. That 1 in 20 dying from a low blood glucose is just one of them. While the scientists work on finding that cure, I think what is important to us all now is decreasing the number of precious lives lost from this disease. From whatever cause. And helping us maintain as close-to-normal BG levels as possible so that we can improve our chances against complications. If an organization chooses an advertisement that some find fear mongering or sensationalized in order to draw attention to a disease that needs well, attention, I don’t think that is so wrong. Things have come a long, long way since the days of urine testing in tubes and sterilizing syringes before injecting and giant BG meters that took almost 5 minutes to read a result with no memory. But we still have so much further to go. And to get there we need the work of organizations like the JDRF or DRI or ADA. No matter how alarming their ads may seem to some.