Monday, June 24, 2013

Support From The DOC

My diabetes diagnosis was in 1945, a few days after my sixth birthday. There was very little known about diabetes back then. The only rule my parents had to follow was to not let me have sugar. I could eat anything else I wanted. There was very little change in my life except for avoiding sugar, and taking one shot of insulin each day. There was no device for testing my blood sugar, and no information about carbs, and their effect on blood sugar. It seems almost a miracle that I have now lived for 67 years, and have no diabetes related complications except for some mild nerve damage. There are many other type 1 diabetics like me in the US who have lived with their diabetes for 50 years, or more. Many of them have received the 50 year medal from the Joslin Diabetes Center in Boston. A study is being done on the medalists to see if the factors can be found that have enabled them to live so long without any serious complications. I participated in the study in 2009.

Despite my having good diabetes health, there was so much I did not know about diabetes. My doctors in the early years knew very little about diabetes. In July, 2006, I watched an episode of the Dlife TV program. They mentioned that there was a Dlife website that offered support to diabetics. I joined that day. There were many diabetics of all types taking part in interesting discussions. There was so much information that was new to me, and it was easy to see this was the right place for me. How could I have gone 61 years without all the things I learned on the Dlife website? There were several other websites that were also very helpful, and I joined several of them. I shared my knowledge with my new online friends, and they shared their knowledge with me. Some of the members on Diabetes Daily convinced me to use an insulin pump. I started pumping in June, 2007. My blood sugar is much more stable now, and I have fewer highs and lows. I have not needed assistance with a hypoglycemic episode since July, 2007. I felt that the education I received from the diabetes online community (DOC) was so good for me. I helped many fellow diabetics on several diabetes websites, and that made me feel good.

 I joined Facebook in December, 2010. There seemed to be an endless number of groups there that were focused on diabetes. I am currently a member of about 30 of those groups. I truly enjoy assisting the more uninformed diabetics, and their families. It is so easy to see how valuable it is to all participants in the online discussions. Many of them are getting too little advice from their doctors, but they receive many replies to their questions online. Hundreds of parents of young type 1 children were impressed by my longevity and good health. They tell me that I have given them inspiration and hope for the futures of their children. My wife and I will be attending the Friends For Life (FFL) conference in Orlando, FL, in July. It is an international conference for type 1 diabetics, but the emphasis is on the type 1 children and their families. There I will meet many of my online friends. 

My communication with my online friends, and the research I have done, has given me experience and much knowledge about type 1 diabetes. I have written a book about my life with diabetes, and have given talks to two local diabetes support groups in my part of New York. It would be great if I had the opportunity to become a motivational speaker, and visit many areas in the US. 

It is a dream of millions of diabetics to have long, healthy, and productive lives. The DOC provides the support, education, and incentive to make this possible.  

Friday, June 14, 2013

How Did Your Type 1 Diagnosis Make You Feel?

Dr. Stephen Ponder, a pediatric endocrinologist, started a discussion on his Facebook page about the effect that a type 1 diagnosis had on the lives of his type 1 Facebook friends. He invited us to reply and describe our feelings back then. Most of his type 1 friends are the moms of type 1 children, so I am posting about this here. My reply is unique because of my number of years as a diabetic, and is posted below:

I am 73 now, with very good diabetes health, but I was diagnosed in 1945 when I was 6. Years later my mother told me about the diagnosis and that the doctor gave no advice except that I should not eat sugar. For that reason diabetes did not change my life very much. I adjusted very well, and rather quickly. Having to take a shot once per day and not getting to eat candy and other goodies were the only day to day changes in my life back then. There were no finger sticks until the 1980s, testing urine each morning was painless. I did not know about the possible diabetes related complications until I was an adult, so I led a carefree life. This makes it seem like things were better then than now, but that is not the case. Many more type 1 diabetics had terrible complications with eyes, kidneys, etc back then and there were very many deaths from diabetes. It is not known why some of us from the early years lived so long and stayed healthy. I am not aware that I ever had DKA, and I never heard of it until the 1980's. I led a rather normal life without worrying about my diabetes.

I wish you parents of young type 1 children today did not have so many worries. The extensive knowledge available now enables you to know what can happen without good control, so you worry so much and watch your children so closely. That is good though, and it leads to good results. At the present time the life expectancy of young type 1 diabetics is almost as good as that of non diabetics. That is a very encouraging fact!!

Friday, June 7, 2013

My Experience With Endocrinologists

My doctors 1945-1977 knew almost nothing about diabetes. Living in a rural area in south central Virginia did not help. I was lucky to survive those years. In 1977 I saw an internal medicine doctor who knew a lot about diabetes, but he failed to give me some basic info that I needed, and he refused to write a letter permitting me to use a pump when I asked in early 2007. He had a few patients using pumps, and they were having more hypos than they were having before pumping. He did not want me to have that experience, so I started looking for an endocrinologist.

I saw my first endo in 2007. She thought a pump was a great idea, but she gave me many wrong numbers for my initial programming on the pump, and I had highs in the 300's. With the aid of the pump manual and the book "Pumping Insulin" by John Walsh, I reprogrammed my pump on my own and things were good a few weeks later. This endo did not impress me at all. She had been an endo for many years, but she did not seem to have a firm knowledge of things pertaining to diabetes. When she left the area I started seeing her replacement. My second endo was young and inexperienced. She had very little experience with type 1 diabetics. It was evident that I knew much more than her about my diabetes. She agreed to almost everything I said and requested. It worked well in that respect, but I wanted to learn from her, and that did not happen. She relocated to another city, and now I have a third endo.

My third endo really impressed me on my first visit. She took my pump and made notes about all my programming. Then she asked me to make a number of changes before my next appointment in July. I knew those changes would not work, they might for some type 1 diabetics, but not me. I did not say much to her except answer her questions. She knows so much about type 1 diabetes, and I was in awe of her knowledge. Most doctors think that all type 1 diabetics march to the same drum beat, and all of us can follow the exact same set of rules to get good control. My new endo seems to be one of those, but I have seen her only one time, so I will wait and see. If she agrees that my case is different, and that I know how to have good control without conforming to her suggestions, then we will get along fine. I will know next month. If I do not stay with this endo, there is no other in my area. I may have to give up on endos, and continue with my internal medicine doc, he is a good diagnostician and has helped me in many ways.

There are two endos on Facebook who have really impressed me in so many ways. One of them is in Texas, and the other in Boston. I would love to have one of them as my endo.

If you have read this blog, what experiences have you had with endos? Good, bad, indifferent?