November is National Diabetes Month

33 years after the life changing diagnosis, what can be said about diabetes that has not already been said? Still, regrettably, the apparent superficial regard for rampant diabetes in our culture is devastating to those who do this dance with diabetes 24/7/365, no break… none. No, really. There is not one moment we are not calculating; blood sugar, the next meal, the supply of carbs available, where is the closest source of carbs and how long will it take to get there? How long to actually get those carbs into the system. Not being one of this exclusive club, imagine for a moment that in addition to everything that we do in life; imagine that on top of that, there’s this little demon inside waiting for the moment when he could literally KILL YOU! To combat the demon a small voice is developed, deep inside that constantly inquires about a number that would accurately represent, in milligrams/deciliter, the actual blood sugar reading of the system at that particular moment in time. Can it be done? If not for the absolute need for survival could anybody do that every minute of every day? Out of necessity, it is clear, it can be done and by literally millions of people. Each of those people has their own, additional, story. Stories that define, beyond superficial impressions, the meaning of balance, management and control. Control, Ha!

It is true, that a vast majority of people with diabetes are type 2. It is also true, that so much more needs to be done in every aspect of healthcare relating to diabetes. All cases of diabetes, diagnosed and un-diagnosed,  in the United States alone, are nearing 30 million people. It is also estimated that diabetes will increase by 64% in the next 10 years – http://www.cdc.gov/diabetes/data/statistics/2014statisticsreport.html – The need in our society to think about what we eat on a daily basis is beyond epidemic proportions. One of the most depressing things about a Disney vacation is the physical state of our fellow citizens. Diabetes is telling us something. Diabetes, perhaps, is here to thin the heard. The herd is not listening. The truth is, diabetes, type one or type two, ignored or dismissed will kill you, one limb at a time, if you let it. For the lucky ones, a denied state of diabetes will take them out in one massive stroke at the ripe old age of 60 or less. To put a dollar amount on this? Nearing or surpassing $250 Billion annually and that’s just in this country. The irony is, of course, it does not have to be this way. There are things that can be done to avoid that.

Diabetes is hard. That much is true. The best thing that can be said about diabetes is that it teaches discipline, moderation and self-reliance. Especially for type ones. For a type one there is no choice. Care for the disease or die. It is clear. Type two people are presented, perhaps, with a little less urgency but it will kill them just the same. Type two people, more often than not, have been walking around in that condition for years before being properly diagnosed. Years of elevated blood sugar takes its toll on those tiny capillaries that supply blood and nutrients to the brain and extremities. Nothing in our system responds well to elevated levels of sugar. Of those 30 million people with diabetes previously mentioned, 8.1 million or 27.8% are walking around totally unaware that a demon is plotting their demise. These are real  people and they deserve some attention. These are not people to be vilified for eating too much or sitting on the couch too long. These are people who, at every turn, are urged to super-size. A 16 ounce serving of nutritionally empty soda is not enough. We are encouraged for 25 cents more, to get the 20 ounce size. These bigger and bigger portions are killing us. The cost to our society for ignoring this epidemic will certainly increase in dollars but more importantly, it will continue killing our families, our friends, our neighbors, and ourselves.

Diabetes is killing us. November is National Diabetes Awareness month. Donate a small amount  to a group helping people with diabetes in your community. There are people with diabetes in your community that can’t get the medication they need each and every day. Maybe you can help someone this November.

My Life With Diabetes

Featured on ami-diabetic

Aware

I read that the national Breast Cancer awareness campaign reduced the incidence of  breast cancer by 7%. 7%. Translated to diabetes, in whole numbers, we would reduce the people with diabetes by 1.8 million. Apply the same reduction to the cost diabetes has on our society in dollars, we would save 175 million dollars. We all need and want research for a cure but in the meantime we need to do everything possible to reduce the toll diabetes takes on our culture every single day. Awareness campaigns work. Why is there no national face, image, identity for diabetes?

Miss Manners – still wrong.

Sorry, Miss Manners initial response to the person with diabetes asking about testing his blood in his seat was wrong, especially if written by a PWD. No amount of parsing will change that. And shame on Nick Martin, Miss Manners’ son and person with type 1 diabetes, for not giving full disclosure in the column. A disservice was done to people with diabetes everywhere. Rather than acknowledging this, excuses were made. Nick Martin admits to being able to dose in the dark, to test without others knowing, to being discreet… after the column was published. Most PWD do this regularly but sometimes it is just not possible. There was little or no recognition of the difficulties of a life with diabetes from this type 1. An opportunity to raise awareness of the plight of people with diabetes was lost, yet again! Rather than an apology from a person who knows the difficulty of living with diabetes in public a defense was given. Not very mannerly!

Dear Miss Manners,

In response to the answer in your February 18, 2014 column to the person with diabetes, I must say you have little or no understanding of people who try to control their blood sugar minute by minute, hour by hour, day by day, week by week, month by month, year by year throughout their lives.

I try not to allow my 24/7/365 condition to disturb the perfect world you would like to have. The world where there is no tolerance for imperfection, the world where rules of etiquette prevail over all else. Even though I am a considerate, thoughtful and polite person I have been burdened with the task of controlling my blood sugar no matter where I am or what I am doing. Allow me to enlighten you as to what living with diabetes really means.

It can mean, for example, that the seat belt light is lit on the flight I am on and I feel a little light-headed and shaky. I can’t immediately be sure if this is because I am nervous about our impending departure or if I am getting hypo-glycemic. The only way to be sure is to administer a finger-stick blood test in my seat. If your rules of perfection prevailed I would wait until after take-off and then after the fasten seat belt sign has been turned off. At this point, perhaps a half an hour or more since my initial symptom, I am to calmly & with dignity, walk to the rest room. If it is not occupied, I should enter and administer a blood test in an environment that is rarely clean. How quaint that you haven’t the slightest awareness that if I ignore my hypo-glycemic symptoms for that amount of time we will all hear on the nightly news how a sick passenger caused a monumental delay at one of our nation’s airports and had to be removed from the plane by ambulance and nearly died, or did die, from severe low blood sugar. It has always been my own policy to do what I need to do, when I need to do it and politely engage those curious eyes with some words of wisdom or an informative conversation if they are so inclined. I will never hide my diabetes. It is an integral part of many, many people’s lives and it should be acknowledged and seen for what it is; a condition that requires constant attention.  Diabetes is a condition that must be integrated into everyday life and dealt with at a moment’s notice, often without warning.

How utterly ignorant that one would expect a relentless unforgiving condition to be managed in a way that keeps it invisible to the general public so as to not offend anyone. Well, Miss Manners, I and the three million or more people with type 1 diabetes are greatly offended by the burden that has been placed upon us involuntarily. The burden to administer 6 to 10 finger stick blood tests a day. Blood tests before every single thing we eat. Blood tests 2 hours after we eat. Blood tests before we go for a walk or a drive or to the gym. Blood tests when there is a doubt of whether what you are feeling is hypo-glycemia or nerves or nausea or just plan not feeling right. We people with diabetes that use injections as our method of desperately trying to control our condition are greatly offended by having to inject insulin into our abdomen, arm, thigh or butt before every meal. We who use an insulin pump are offended by having to constantly program an insulin dose before eating and to stop everything every two or three days to self-administer an invasive medical procedure to refill our insulin supply and move our infusion site to avoid infection. Did you know, Miss Manners, that some of us also have a continuous glucose monitor that we must attach to ourselves through another invasive procedure and that must be changed every seven days? Do you have any idea whatsoever, even with all these advanced invasive technological wonders, how nearly impossible it is to maintain a blood sugar close to what your proper and inoffensive pancreas can do without offending anyone. Do you have a clue, Miss Manners?

Clearly, you do not. Allow me to offend you further; I am of the opinion that with nearly 27 million people in this country battling either type 1 or type 2 diabetes that we need to bring diabetes management out of the rest rooms and into your face. If you and people like you, do not see the dire need to control a medical condition that kills someone every 8 seconds and costs our society upward of 245 Billion dollars a year, then you need to see, first hand, the devastating personal toll this condition has on people just like you. Polite, dignified, thoughtful people who would rather do a blood test in public than bring an entire plane full of people to a most inconvenient delay.

You, Miss Manners have done the 27 million people with diabetes in this country a grave disservice. You have perpetuated the idea of shame for people who, for the most part, achieve great things such as being productive workers, creating families and contributing good things to society in spite of a condition that is a full time job in and of itself. We await your apology.

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.

My friend and nemesis

Exercise. For a time, a few years ago, I trained and did a 30 mile Tour de Cure. I did this largely due to my daughter trying to help me find a workable exercise routine that my persnickety demands could live with. I also did it to support my compatriots in the struggle to live with type 1 diabetes while raising research money, hopefully, for a cure. Win-win. My daughter proudly led her dad to his best exercise routine in a long time. I accepted her gift with the understanding of how great this was for my health.

The training was great fun. My diabetes was in very good control, I brought my A1c down, I ate better, my blood pressure, cholesterol and cardio panel all improved. The list of benefits regular cycling brought goes on and on. Exercise is good!That doesn’t make it an easy commitment to make.

I continued to ride after the tour and really enjoyed cycling. I was riding about 10 miles a day, first thing after a calculated breakfast and snack packing! As time went by my family became more and more concerned about my safety and well-being out on the road. Not because of my diabetes, I maintained excellent control, but because of the incredible danger of riding through a tree-lined, hilly, suburban terrain. I persisted for several more weeks. I finally found something that really worked and was easy to do. Get up, get my bike and start to ride. Perfect. But the father of a friend of my daughter’s broke his neck in a cycling accident and that was when I stopped.

That was about a year ago and since then I couldn’t find something to take its place. I don’t enjoy the gym. I did it for a bit but, as often happens, the routine got old and I tapered off to a complete stop. It’s been that way ever since. I walk about 20 to 30 minutes a day and that’s it. Granted the walking I do is great and helps my sugar level off better post breakfast. It is still not enough for, what I have learned to be over the years, the minimal exercise needs that keep my sugar in control and my over-all health optimal.

What to do? Swim. I could swim. I like swimming and it is an excellent workout. Sold. Here’s the problem: I have to drive to the gym to use the pool and I take the bus to work. The gym is in the opposite direction of the bus stop that I can walk to from my house. My morning schedule is already tight and I also know from experience that morning is my time to exercise. So this is a challenging dilemma.

Now I am getting up an hour earlier to fit this into my schedule. I drive to the gym, swim for about a half hour and drive back home to shower and get ready for work. I have missed my usual bus every time I’ve tried this new routine. Tomorrow I will get up another 1/2 hr earlier and try again.

The good news is that I enjoy the swim which means I will try to continue. The bad news is I am a night person and rising earlier and earlier could make this schedule unsustainable. Right now I will try and get on an everyday swim schedule until I am sufficiently addicted to the need for the swim. Once I’m addicted to the swim I can relax a little and get a little extra sleep… but not too much for fear of falling back to the sloth-like state I was in before this new determination! I really want this to last.

Stay tuned…