Tuesday, May 22, 2012

Good Control Is Usually The Key To Success

When I participated in the Joslin Medalist Study in 2009, the director was there making sure everything was done properly. She gave me some interesting info. The medalists are type 1 diabetics who have lived with diabetes for 50 years, or more. I was told that some participants had never taken very good care of themselves, and they still eat almost anything they want. They do take insulin, but they have no serious complications. There are also other participants who have some rather serious complications, but they have taken very good care of themselves. So I asked if these two groups were a significant part of the 500+ medalists who had participated at that time. She said that the two groups were rather small. The great majority of the participants who had practiced good diabetes management were in good health, with no serious complications. It seems that the members of the small groups mentioned above are exceptions to the rule. I am one who has always done everything possible to have stable control, and it has paid off.

At the present time there have been approximately 750 participants in the Medalist Study, and they plan to continue until there have been 1000 medalists participating. The JDRF, the NIH, and private sources are funding the study. Some very interesting things have been discovered.

I have mild nerve damage after 66 years of type 1,but there is no other diabetes related problem. I hate to think what might have happened if had been in denial during my early years. I want to be the first type 1 diabetic who lives 100 years with diabetes. That would happen on September 15, 1945, and I would be 106 years old. Does anyone want to attend my celebration on that date? :)

Sunday, May 20, 2012

My Diabetes Hero

This is the last day of the Blogger's Week participation. The topic for today is "Diabetes Hero". I have encountered many heroes during my diabetic life. I could easily choose my mother, who took good care of me from my diagnosis in 1945 until I left home for my first full time job in 1963. There is one other person, however, who has watched over me for almost 48 years. My wife, Anita. She is definitely deserving of being my diabetes hero.

Anita and I were married in May,1964. She knew nothing about diabetes before we met, but she learned so much, so fast. She brought me out of so many hypos and seizures during our marriage. There was no way to test my blood sugar during our first 21 years, so low blood sugar episodes did occur without warning. Anita was a pro, and helped me through so many difficult times. There were no guidelines concerning a proper diet except to avoid sugar. She watched closely and soon realized that certain foods caused high blood sugar, and she began preparing meals that were more appropriate. In 1988 I learned about the effect carbs had on my BG. My daily carb intake was reduced a lot, and only small portions of some foods were allowed. My control improved, and Anita found it easier to cook for me. With basal and bolus insulin in the 1990s, things improved even more. In June, 2007 I started using an insulin pump. Since July of that year I have not needed any assistance with low blood sugar episodes. Anita is very happy with my pumping experience, it is like she is having a long vacation. She does not have to watch me so closely now, but during the night she still has concerns. If I make a noise in my sleep, or am unusually restless, she awakens me and has me test my blood sugar. On some of those occasions my BG was dropping, so I don't argue with her. I test whenever she thinks I should.

I will be forever grateful to Anita for her wonderful care taking. I love Anita so much!! We will celebrate our 48'th anniversary on May 31, this year.

Saturday, May 19, 2012

Picture, Joslin Medalists

For the sixth day of the Blogger's Week participation, we are to show some picture that is special to us. The picture below shows a group of long term type 1 diabetics. They have all been type 1 for 50 years, or more. The Joslin diabetes Center in Boston awards medals to these diabetics. The older people in the picture are the medalists, the younger ones are doctors and staff members at the center. I am the taller fellow in the middle of the back row. The Joslin Medalist Study is examining medalists to see what makes us different. I participated in the study in 2009. The doctor presiding over the meeting said that he had never seen such a healthy looking group of "sick people" Lol!



Friday, May 18, 2012

What Non Diabetics Should Know

All diabetics have to put up with the widespread ignorance that exists among nondiabetics. We diabetics hear statements like "You got your diabetes because you ate too much sugar"; "If you get fat you are going to be a diabetic"; "You cannot eat that, it has sugar in it";....and there are so many other myths we hear.

My friend, Riva Greenberg wrote a wonderful book called "50 Diabetes Myths that Can Ruin Your Life and the 50 Diabetes Truths that Can Save It". Riva did a wonderful job debunking the 50 myths mentioned in her book.

If every nondiabetic was forced to read Riva's book then the myths would no longer exist. There would be so little ignorance about diabetes.  Would this possibly lead to the population taking diabetes seriously, and would all the newly aquired knowledge lead to a cure? Hmmm, there is one stumbling block here. How do we gen the many millions of non diabetics to read Riva's book?

Any ideas?  Lol!!!

Thursday, May 17, 2012

Fantasy Diabetes Devices

I used a Medtronics CGM for a week in 2008. It was a loaner of a sensor from my endo's office. It did nothing for me, it just kept me awake with false alarms, so I put it in vibrate mode and ignored it. In 2010 my insurance allowed me to use a Dexcom. It was much better, I liked it! Then in October of that year I was informed my group insurance was changing. I lost my coverage and would have to pay for everything myself. I stopped using a CGM. In October, 2011, I went to Minneapolis to meet online friends, and attend their diabetes Expo. One friend let me use his Navigator CGM, made by Abbott. I couldn't believe my eyes. It had a short warmup period, and the accuracy was incredible. I used it three days and the agreement with my FreeStyle meter was amazing. It was so much more accurate than Medtronics or Dexcom. So why is the Navigator no longer sold in the US??? It is sold in Europe, but not here. My fantasy for quite some time has been an accurate CGM. Apparently we cannot buy a Navigator from Europe if we want our insurance to cover it. Medicare will not cover any CGM whatsoever. My fantasy is to see this wonderful CGM sold in the US again. I have a Facebook friend who participated in an artificial pancreas trial in Boston last year. The Navigator was used in detecting the BG numbers that ran the whole trial. They made a good choice.

Wednesday, May 16, 2012

One Thing To Improve

I was a type 1 diabetic from 1945 until the 1990s while using animal insulins. Then synthetic insulins entered the picture. I was counting carbs and getting plenty of exercise, but I started gaining weight, and did not know why. I was having to use much more insulin than before. My teaching at the community college was not good anymore, I had lost my ability to be a good teacher. I retired at the age of 57 in 1997. My doctor diagnosed insulin resistance, and in 1999, I started using a type 2 med, Avandia. My resistance decreased, and so did my insulin dosages. I felt much better and taught part time for several years. Avandia was found to cause heart complications for many users and was banned in many countries. My endo then prescribed Metformin. I had been reading more and more about type 1 diabetics who were using Metformin for isnulin resistance, and was anxious to give it a try. I had no complications with Metformin ER and took 1000 mg both AM and PM. I started losing weight, and during the first 14 months of using that med, I have lost 22 pounds. Now I am only one pound above my ideal weight.

Metformin has helped me very much, but my control is not as good. My weight has stabilized, but the range of my BG's has increased. I am having more lows and highs that before. Adjusting many things, especially basals and ratios on my pump, has not helped very much. I have an average of two lows in the 35-55 range each day, and they can occur randomly and show no consistent pattern. I have adjusted to these lows, and never need any help with them, but I really need to find some way of avoiding them. I really need to improve this situation, and stop having so many lows. My spring and summer schedule is going to be hectic with working on my house and doing a lot of sanding and painting. I insist on taking a lot of long walks and working out at the  local gym. Staying in good physical shape is an obsession of mine. I am very active, but that is part of the reason I have these lows. I must try and have my schedule become more consistent and find a way of keeping my BG above 60. It won't be easy, but that is my challenge for the rest of this year.

Tuesday, May 15, 2012

One Great Thing

I was diagnosed in 1945 when very little was known about diabetes. There were no "types" back then, All diabetics were told to avoid sugar, but there was very little other advice given. In the 1980s I bought my first glucometer and in 1988 I learned about the effect of carbs on my BG levels. in the early 1990s I started keeping charts so I could keep track of my BGs, insulin dosages, carbs eaten, and daily totals. In more recent years I have added exercise, infusion set changes, daily notes on taking medicines, etc. I have been very very good about this and it has helped so much to develop good diabetes management. I realize that I could do this on a computer, but I started keeping these records before the PC's existed. Old habits are hard to break, and I am sticking to my charts that are hand written. Just call me old-fashioned. I take a chart to my endo and she makes a copy for all of my visits. We discuss it in detail, and she has always given me high praise for having very good control. My record keeping and the good control I have is the "one great thing" I am mentioning today.

Find A Friend

I am getting a late start on diabetes blogger's week. I did not know about it until today. I have not done much blogging, even though I started in 2010. I will make posts today for the Monday and Tuesday topics.

I have recently found a wonderful blogsite called Dia-Beat This, located at http://diabeatthis.blogspot.com/. The young lady posting there is named Lesley. She recently participated in an automatic pancreas trial at the University Of Virginia. She has written a series of blogs about her participation, with many sidelights. Her blogs are very well written, and I really enjoyed reading them.

I have not joined many blogsites yet, so the one I have mentioned is my contribution for today's topic.

Monday, May 14, 2012

I'm A Prisoner In My Own Home

Anita and I have been married for 46 years. I was a diabetic for 19 years before we were married in 1964. She was only 20 then, and knew nothing about diabetes. I rarely had insulin reactions back then since my blood sugar was undoubtedly high so much of the time. There was very little known about diabetes care. The monitors for measuring blood sugar levels were not available until the mid 1980s, and there was almost no useful advise given by my doctors. When I became more educated about diabetes, and had a doctor who knew more about diabetes, I started using tight control. Along with that control came many insulin reactions (hypos). When the hypos started in the early 1970s Anita was very good about it. She did a great job!!! I praised her every time she brought me out of a hypo.

Anita devoted most of her time to our two sons. Many years later the boys were in high school, and they demanded very little of her time. She was a stay-at-home mom, and had a lot of time on her hands. Later on, the boys went off to college, and I was the center of her attention. She became a chronic worrier about so many things, including my hypos, which were not so frequent at that time. She would feed me glucose tablets when hypos occurred at night.

Fast forward to the new century. Anita is an extremely nervous person, especially concerning my diabetes, even though I am using an insulin pump, and have very good control now. She wants me to test every 2 hours while I am awake,  every 3 hours  during the night, and once every hour when we are out traveling, shopping, etc. She rarely drives our car because of her nervousness. Every time I turn over at night she wakes me up and wants to know if I'm OK. I love her to pieces but she drives me crazy!!! She worries needlessly about my diabetes, even during the daytime.

Anita started to become overprotective after the kids left home. They have been gone for 23 years now. They live in NC and GA and we are in NY. We usually see them only once per year. My wife heaps all her mothering on me. I have realized that for some time now, but there is nothing we can do about it. Our marriage is wonderful, and I understand she cannot help being this way. Is it possible to be loved too much? HA!

I started training on my insulin pump in May of 2007. Anita attended all the training sessions with me. She actually said that she thought that I would do much better, and she would not have to worry so much. It was a dream come true to hear her say that! The very next night after she said those words, I had a rather bad hypo. It was the first one since Jan. 5 of that year. She still seemed rather optimistic though. I was encouraged about pumping, and her optimism. I have not had any hypos that required her help since July, 2007. So why is she still worrying as much as ever??? I still have to test every two hours, and nothing has changed, despite the fact that my control is very good with no hypos that require her help. Her worrisome ways will never end. I am convinced of that.

After retiring I wanted to travel and see more of our country and Canada. The UK and other European countries were places that really interested me. Anita hates travel and loves staying at home. She even hates flying to Atlanta to see our kids and grandkids but she loves the visit once we get there. I want to travel alone, and am very confident that I would be perfectly safe in doing so. Anita says she will not allow this! If I go, she will go with me, even though she does not want to do so. Enjoying a vacation with her tagging along would be impossible. She would not enjoy it, and we would both be miserable. Staying at home seems to be the only option. This situation is so very frustrating!

I can tolerate Anita mothering me, and worrying about me, but I want to travel. I worked hard for many years and we have a savings that would permit the travel. The only feasible solution seems to be my running away from home. I would stay away for a few weeks and call her three or four times per day. She would probably, eventually, forgive me. She would be at home with her three cats, where she wants to be. She would be very angry but she would understand, or would she? This escape has occupied my mind for several years. So why don't I do it? My love for Anita is so strong that I cannot do this to her. She would worry so much, and lose sleep at night.

We planned a trip to England in 2011. When I made out our scedule, we bought our passports, and I was about to purchase our plane tickets, she came unglued. She could not make that trip, she was so frightened. What if I had a terrible hypo while we were in another country, so far from home? What would she do?  I had to put all the plans away. We have planned trips like this before, but they never happened. We went to Minneapolis in October, 2011, and I had a great time at a diabetes expo. We met so many of my online friends there. It was wonderful!! Anita had a "grin and bear it" time. She did it for me. Now I am more hungry for vacations like this than ever before. Anita says we took a nice trip, and I should be satisfied. She thinks we should save our money for the future when we are in a nursing home. I would be sitting there in the nursing home and regretting I had never taken the trips I so very much wanted.

What would you do if you had this problem? It is not fair to me if I stay at home to make her happy, and it is not fair to her for me to take her along, or run away on these dream vacations. We are getting older, and something has to be done about this, but what? <sigh>

Wednesday, May 9, 2012

Living With Type 1 For More Than 60 Years

In October, 2008, the Diabetes Forecast magazine interviewed eleven long term diabetics who had lived with type 1 diabetes for 60 years, or more. That month was the 60'th anniversary of the magazine.

I was one of the diabetics chosen for the article, and they sent a professional photographer to my home. It was August and the issue was not going to be released until October, so the photographer told me I would have to look Octoberish. Lol! I wore long sleeves and pants with long legs. It was a day when the temperature was in the 90s F. That was difficult, but I was pleased to be part of this group. 

The gentleman on the cover of the magazine is William Rounds. He was diagnosed in 1923 when he was 11 months old. In 2008 he had been a type 1 diabetic for 85 years. In the side bars below William's story you will find the stories of the other participants. I hope he alive and well. He attended the Joslin Medalists meeting in Boston, in 2009. I was not at the meeting that year. It would have been great to have met him.

The link below shows the article. My story is on the left hand side about half way down. 

http://forecast.diabetes.org/magazine/features/long-lives-lived-well

Thursday, May 3, 2012

Hi Sugar, Honey, Sweetie....

I frequently call my wife sugar, honey or sweetie. Don't all of us call our loved ones by those names? Our spouses, children, close friends, dates, etc. Even our pets may share those titles, when they behave themselves. Our youngest cat is named Sweetie!

It seems that all humans are obsessed with sweet tasting things. Foods and drinks sweetened with sugar, candy, ice cream, soda pop,....the list is endless. Since we like things that have a sweet taste, it seems natural that we would use names like sugar, honey and sweetie to describe the feelings we have for our loved ones. I used to tell my wife that if I kissed her several times in the same day I would have high blood sugar and need extra insulin.

It seems a shame that sugar is one of the things we diabetics have to avoid, or exclude from most meals and snacks. I totally avoided sugar every day for many years. The only rule my parents were given when I was diagnosed in 1945, was to not give me any sugar, or foods sweetened with sugar. I stuck with that rule for many years. I ate raw sugar when I dropped too low, but avoided candy, cookies, cake, and ice cream unless they contained artificial sweeteners. Eating things containing sugar might have become addictive and I might have cheated and eaten my way into DKA. The artificially sweetened foods and drinks tasted very good to me while I was younger because I was not familiar with the taste of foods sweetened with sugar, so I could not make a comparison. The number of carbs in the artificially sweetened foods is sometimes as great as those sweetened with sugar, but sugar causes a faster spike.

In more recent years I have found that eating things containing sugar will not hurt me under certain circumstances. I cannot have sugar at breakfast or in the evening because I am not getting enough exercise to compensate. My exercise during my gym workouts or on my long walks always occurs in the afternoons. I can have an ice cream cone (24 carbs), a Hershey bar (26 carbs), a Payday bar (25 carbs), or other treats before exercising. I have learned that 24-28 carbs is just right before exercising. It is perfect for gym workouts, but I need one unit of insulin before taking a walk. The walks are less exerting. If I exercise longer than usual I need a few jelly beans to compensate. This has worked very well for me for a few years now, but for my first 60 years I was still avoiding sugar sweetened foods.

I still avoid sugar unless I know it is not going to hurt me. If I want a candy bar, or ice cream, then I know I am going to need at least an hour of exercise. My desire for sugar is an incentive for exercising. Since exercise is very good for us, I suppose this is a good thing. Do you agree, sugar?

Do you allow sugar in your diet? If so, how do you compensate for it? If you eat sugar sweetened foods or drinks, and do not exercise, how do they affect your control?

Tuesday, May 1, 2012

My A1c's 1980-2011

My A1c's 1980-2011

 I thought it might be encouraging to some of you to see my A1c's starting in 1980. A1c testing was not available until 1976. My doc started A1c's with his patients in 1980. I was diagnosed in 1945 when I was 6 and I must have had very high blood sugar until about 1988. That is when my A1c's began improving.  I am alive after 66 years of Type 1, and I have no complications except for mild nerve damage. If you have a lot of high blood sugar after diagnosis, that does not necessarily mean that you will suffer diabetes complications. I am living proof of that. Do the very best you can and keep this in mind.

 As part of my preparation for my taking part in the Joslin Medalist Study in 2009 I was supposed to have a listing of all my A1c's that have ever been done. My doctor was very cooperative, but there are several gaps in the list. The years 1990-1994 were not available.

 Below are the A1c's that my doc was able to retrieve from his files. I have updated for 2010-2011.

 1980...10.6, 9.6, 9.0
 1981...11.8
 1983...9.2
 1984...9.2, 9.7, 8.9
 1986...11.1
 1987...8.0, 9.8, 10.3
 1988...10.5, 7.7, 7.7
 1989...7.3

 1995...6.8
 1997...6.0, 5.4
 1998...6.5
 1999...6.8, 6.7, 6.5
 2000...6.3, 6.1, 5.5
 2001...5.8, 6.0, 5.6, 6.0
 2002...6.0, 6.4, 6.2, 6.0
 2003...5.6, 5.4, 5.9
 2004...5.9, 5.7, 5.8, 5.6
 2005...5.6, 5.8
 2006...5.6, 5.7
 2007...5.5, 5.6, 5.7, 6.1
 2008...5.7, 5.9, 5.7, 5.6
 2009...5.6, 5.8, 5.8
 2010...5.7, 5.6, 5.6, 5.4
 2011...5.7, 5.7, 5.8, 5.5

Notice the drop from the 10's to the 7's in early 1988. That is when I read an article in a magazine that said diabetics should watch all their carbs, and not just sugar. My doctors never told me that. Then about the start of the new century I was permitted to use basal/bolus control. In 2007 I started pumping. My A1c's have been very good during the new century because I finally knew what to do to get good control.

I took only one injection of beef/pork insulin per day during my first 40+ years. Can you imagine what my A1c's would have been during those years? Those were the years before my doctor started having my A1c's done.

I feel so lucky to be alive and healthy, without complications. Is it good genes? Maybe the Joslin Medalist Study will help answer that questions.