Relentless, invisible and angry.

Thirty years and counting. I’ve stopped thinking that diabetes will be cured in my lifetime. My focus is micro, minute to minute, hour to hour, day to day. My concern is my blood sugar, now. My A1c, later. The research science? The cure? Never. I never think about it. I always feel abandon by the organizations that claim to represent me. They may claim to represent me but they do not listen to my voice. When I reach out to them they claim that their “experts” represent my voice so my voice is not needed. So I return to my immediate concerns, my blood sugar. The loss of control maddens me. Tiny adjustments can throw my world into a blood sugar tail-spin. I strive for perfection, all the while knowing perfection is unattainable. I live my life with diabetes without the help or concern of any organization that claims to represent me and I resent it. I searched for the top 10 diabetes videos and the results were appalling. So I used my own money to make a short video; Life With Diabetes.
It drives me a bit batty that there are 26 million people in this country with diabetes and the diabetes organizations that claim to represent our voices cannot even get a mention on the national media scene during November, National Diabetes Awareness month. Diabetes; with 18 million known cases in America, 8 million undiagnosed, 79 million with pre-diabetes, a death every 8 seconds from it’s horrific complications and there is hardly a mention of it in the national news during the entire month of November. Our diabetes organizations are failing us, big time.
By contrast, Prostate Cancer, a disease with only 200,000 new cases last year and 29,000 deaths for the entire year, brilliantly creates “Mo-vember” and has a place on NBC’s Today Show every single day in November. The unshaven male represents Prostate Cancer in November. The Breast Cancer Awareness campaign should be the “How-To” guide for any organization wishing to raise awareness for its cause. There were 207,000 new cases and 40,000 people died from Breast Cancer in 2010. While Breast Cancer and Prostate Cancer are devastating diseases that deserve the money and emotional support they raise, diabetes affects almost 9% of our population. The numbers for diabetes are staggering and rising at epidemic proportions but there is not a single voice that represents us. There is not one organization we can rely on to be a constant presence in the media clutter. How can this be? Can anyone in the diabetes care community answer for this? The longer People With Diabetes (PWD) allow their voices to be silenced by our “representatives” the less money they will raise for our cure because they have chosen to ignore their number one money raising resource, the PWD! Jerry Lewis knew the power of the afflicted. Where is our Jerry Lewis? We cannot wait for that person to step up.
PWD are consumed with living their lives while trying to care for a relentless, unforgiving condition that requires, literally, all of their time to control it. If you don’t live with diabetes, imagine having to think about how much insulin you should tell your pancreas to secrete each time you eat something. Where would you even begin? Before a PWD starts a regular work-day or school-day this is what they must do. And we have to do it all day, everyday. It is amazing how many successful PWD there are. Living a successful life with diabetes is the definition of an over-achiever! Managing diabetes is a full-time, no-pay job. On top of that job most PWD have either full time school or full time work. Two full time jobs, one with no pay that is actually a 24/7/365 job. Then on top of that, the organizations that supposedly represent us want us to volunteer to help them raise money for research! I’ll tell you what. Pay me to enlist my fellow PWD to stand on the mountain tops and shout about our needs for a cure and I will raise money for you like nobody’s business. There are 18 million of us and we would rather live our lives without diabetes. In return, you have to listen to us. You have to get our plight out in front of America. You have to spend some money on marketing, advertising and us. You have to spend money on us. We will tell people all about life with diabetes. We will put our “pink ribbons” everywhere. Oh yea, right, we don’t have a “pink ribbon”. What is the symbol for diabetes ,anyway? Can someone please tell me? I have asked the question here. We really need to get organized so that we can get our plight out there but if we can’t even agree on our symbol how are we going to do that?
So, bottom line, big diabetes organizations, I am here, all you have to do is call. In the meantime, I have to do a blood test and then eat, because I don’t want to go hypoglycemic in my business meeting. Have you ever experienced hypoglycemia? Can I tell you about the time I couldn’t walk because I was severely hypoglycemic? Or the time I was working and couldn’t make a simple decision that I make everyday because my blood sugar was too low to allow a simple thought process to occur? I work really hard to avoid these occurrences but even so, they can still happen. After 30 years, I have only been to the hospital once for a diabetes related event. That is a seriously awesome accomplishment and I am immensely proud of it but there is no time to enjoy that because after I eat I need change my infusion site… I do that every three days. How do you tell people that so that they see it happen and know what it means? Oh, and then I should change my Continuous Glucose Monitor site… I do that every 7 days. I tell you this, big diabetes organizations so that you can learn what the public needs to know so that you can use it to make sure we have a National symbol to make sure that people know how desperately we need a cure. We want you to know how tired we get from the relentless 24/7/365 blood tests, site changes, carbohydrate counting life that we live… we need real representation in the media. We need big diabetes to stand up and truly represent us. Show America our numbers and how fast they are rising. We can’t do it alone and we are tired of being invisible and treated only as a source of volunteering to raise money for research.