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…

Managing

Managing diabetes is what I do. It requires commitment, discipline and perseverance. The commitment is not really a choice if you have type 1. You are committed to it because it is committed to you. If you don’t commit to it, its commitment to you will kill you. I have diabetes whether I deal with it or not. The negative consequences of not dealing with it far outweigh the constant impositions of dealing with it. Dealing with it is the lesser of two evils, although dealing with it definitely has an up side. By dealing with diabetes in a way that best maintains a semblance of good blood glucose control, you are committed to eating right and getting exercise. Two very important aspects of a healthier life.

Through my journey I have had very long stretches with no exercise and because I do walk a lot everyday, pay pretty close attention to what I eat and monitor my blood sugar, almost obsessively; my average A1c is about 3.5. If I can do this over 30 years, so can you.

I did not ask for this. I would not have chosen this. If I was given a choice of which disease I would want for the rest of my life and I could construe dandruff as a disease, that is what I would chose. My gift, however, is type 1 diabetes. Since it has committed to me, I guess I am committed to it! Here is what that commitment means: Blood tests. There’s a movie called, “There Will Be Blood”, my movie is “There Will Be Blood Tests”. I have learned not to trust my own senses. Sometimes I have no idea that my blood sugar is 40. As a result, in order to stay upright, I test my blood between 8 and 12 times a day. For the last year I have committed to a Continuous Glucose Monitor(CGM) which has helped me to identify my daily patterns and greatly improve my diabetes control but I still do many blood tests each day. Why? My CGM is very good at identifying patterns but it operates on a delay and is not a true reading of what my blood sugar is right now. No one mentions that very important bit of information when they persuade you to start using(buying) it.It is very helpful and I have become somewhat addicted to it but I do resent the way the manufacturers obfuscate the negatives of this useful device… but it does help.

My discipline in dealing with diabetes never quite seems like it is good enough. Then I remember that most people do not have to “operate” their pancreas! I do. I am required, because of my condition, to have the skill to micro-manage my blood sugar without it interfering with the productivity of my day! If you don’t have diabetes, try doing 10 blood tests, eating 6 meals calculating how many carbohydrates are in each meal, giving yourself a precise insulin dose and exercising for just a couple of days and let me know how you do. You may do very well for a few days but when it will not stop, it becomes a whole different challenge. The discipline required is also unyielding.

Perseverence is probably the most important part of dealing with diabetes. If you do not persevere, the diabetes does. I persevere. I do what I have to do, minute to minute, day to day, week to week, month to month, year to year and 30 years later I still must maintain attention to health concerns that most people do not even think of. Excuse me, but right now my blood sugar is 49. I stopped writing to do a test because my CGM buzzed. I had 4 glucose tablets and shut off my pump… hang on, my blood sugar now, fifteen minutes after the glucose tablets is 71. My pump is still suspended. I’m going to go get some food…

Surgery, Type 1 and You

A recent surgery taught me a lot about how to manage Type 1 diabetes while in the hospital. Before the surgery I contacted my Certified Diabetes Educator (CDE) for advice about how to adjust my basal rate for the procedure. The surgery was scheduled to take about 3 to 4 hours and was scheduled for 12:30 in the afternoon. The CDE consulted with my Endocrinologist and suggested that since I would not be eating for nearly twelve hours prior to the procedure, that I reduce my basal by 30% the night before and 50% during surgery. This sounded reasonable to me considering I would have no food intake for a long time, so I did that. My fasting sugar upon entering the hospital was 190 on my Blood Glucose Monitor and steady, according to my Continuous Glucose Monitor (CGM). I checked into the hospital and went to the pre-op area. My surgeon wanted me to check into pre-op an hour early so that I could meet with the Chief of Diabetes Care in the pre-op area. Part of me felt this was unnecessary since I had already consulted with my team. I am very happy with my diabetes care team and they, along with me, have helped me to keep my A1C to a respectable 6.5 over many years. I felt good about the advice I had received and thought a meeting about my diabetes with a doctor I did not know was unnecessary. This additional pre-op meeting was invaluable, however and I would insist on this if I ever need to have surgery again.
This doctor reversed what my team had recommended. His thoughts were that since surgery introduces a lot of stress on my system my Blood Sugar would rise significantly during surgery. He suggested raising my basal rate by 50% for 6 hours. He grabbed my pump and when he saw that I have nearly 12 different basal rates throughout the day, he declared that I had too many basal rates. This doctor had a kind of enjoyable, yet wild, bedside manner and was a bit too cavalier about grabbing my pump and attempting to change my programmed basal rates to reflect his suggested temporary basal rate change. The last thing I needed, or wanted, was for my meticulously figured basal rates to be changed and then I would have to write them all down and re-program the pump after surgery. I was getting a little nervous about how he was going about achieving his recommendations even though I understood what he was saying and, to be honest, agreed. I was hesitant, to say the least. I persuaded him to give me my pump back so I could properly program the temporary basal to implement his strategy. Since I had put in the temporary basal with his advice I now felt more at ease and we had a great conversation about how the diligence of good diabetes control has lasting positive results.
A few minutes later the anesthesiologist came in to find out how and why I was going to keep my pump on during surgery. He was skeptical that this was a wise plan. I learned, at this point, that patients are normally required to remove their pumps and leave all diabetes control during surgery to the anesthesiologist. The anesthesiologist had never seen a Continuous Glucose Monitor before. While I was quite surprised at this, he was intrigued. In our conversation he learned that I was in excellent control and had a minute to minute knowledge of what my glucose readings were, where they were going and how to manage them. He was persuaded to allow me to keep my pump on and give the CGM to him during surgery. He would monitor my glucose pattern on the CGM and adjust glucose as needed. We then made a plan for him to immediately return my CGM to my wife once the procedure had concluded. He was concerned that I have this device as soon as I was awake and could resume my own care. The anesthesiologist restored my confidence and made me feel that this team was working with me in the best possible way. His enthusiasm and interest in my pump and CGM was refreshing. He was totally into working with me when he learned how he could incorporate the CGM and pump into his regimen. I showed him how to suspend the pump should my sugar dip too low and he assured me he could administer glucose should that happen. He also promised me that should my sugar rise too high he would administer insulin. I was relieved.
The anesthesiologist was sold. He loved the ability to watch my glucose readings on my CGM during surgery. Surgery went well and my glucose hovered around 200 for the entire procedure. Diabetes was never once an impediment to the procedure and all doctors and nurses were rather impressed with my control and the ease of monitoring a person with the tools to maintain well controlled diabetes during surgery.
Recovery went well and the only negative issue I had was the following day after I treated a dipping blood sugar with the small container of OJ left at my bedside. This was also after I had eaten the banana and glucose tablets I had brought with me. I asked the nurse supervisor for another container of OJ to have on hand and she said OK and went away. She never came back. About an hour and a half later she stuck her head in my room again and I reminded her of my need for OJ. She said, “Oh right, you wanted some juice.” I am sure she thought I just wanted some orange juice not that I needed juice close by at all times. I said, with a bit of an attitude, I must admit, “this is a medical necessity, not a whim of desire because I feel like some juice.” About 15 minutes later another nurse returned with my container of OJ which, by now, I needed, so I had to ask for another one! I do find a bit of a lackadaisical attitude toward people with diabetes in the hospital, in general. Perhaps the nurses and staff view it as a nuisance since symptoms are easily dealt with and dismissed. I don’t know what it is about diabetes but there always seems to be an, “that’s not so bad” attitude toward this condition. Anyone who deals with blood sugar control 24 hours a day, 7 days a week, 365 days a year knows how bad it can be. The people that do not take our condition seriously are the ones I always strive to teach in as nice a way as I can considering how annoyed I usually am when these people display their ignorance to me!
The lessons I learned from this hospital stay were priceless. I’ve always known that I am the most knowledgeable about my diabetes. That is one thing that the Chief of Diabetes Care was quick to recognize and that is probably the acknowledgement that brought me into his confidence. It has become crystal clear to me that the way to get the best care in a hospital situation is to insist on it. Insist that you know the most about your condition. Insist that the medical professionals count you as a member of their medical team in caring for you. Engage yourself with every aspect of the reasons you are there in the hospital. Do not let less then great staff members get away with being less than the best they can be for you. If they don’t step up ask their supervisor for them to step down from caring for you and get another staff member to take their place. They will do it. Hospital stays are extremely expensive and you have the right for the best care they can give you. Insist on it. The life you save may be your own!