Saturday, August 26, 2017

The Cleveland Bros, Long Lives With Type 1

Type 1 folks who lived to a ripe old age are not so unusual now. Even in the early 1900s, just a few years after insulin was discovered, there were people diagnosed who lived into their 80's and 90's.
Bob Cleveland was diagnosed in 1925 when he was 5, and lived until he was 89.
Bob's brother, Gerald, was diagnosed in 1934 when he was 18, and lived until he was 93.
These brothers really inspire me. I was diagnosed in 1945, when I was 6, and have been type 1 for 71 years. The tools available and the knowledge for diabetes management are so much better now. When I read about people like the Cleveland brothers, it makes me feel I might live to be 100, or more. I need heroes, too. :)

Here is the story of Bob and Gerald Cleveland:

Wednesday, August 23, 2017

Scar Tissue and Site Rotation

When I was diagnosed in 1945 at 6 years old, 71 years ago, I do not think my doctor knew that I should rotate sites when injecting insulin. My parents were so good about listening to my doctor, and we followed his advice without fail. We injected into the muscle on my upper legs for many years, and there were always very high blood sugar reports from the doctor's lab every six months. I think that was because we were not using different body parts and rotating sites. Scar tissue had probably formed on my very small legs, even though the animal insulin I was using required only one injection per day. By the time I was in my twenties I was using my upper abdomen, and my blood sugar reports improved. There was no meter for measuring my blood sugar at home until the mid 1980's, so the biannual reports from the doctor's lab was the only thing I had to determine how I was doing. A1c's were not available until 1980.
In the 1990s I had a meter and much better insulin. Several injections were required each day, and I was still using my upper abdomen. Eventually it became very difficult to push the needle into my skin. I actually had some needles bend, and had to get a different disposable syringe, reload and try a different spot. I had not been told that this might be scar tissue, no doctor had ever mentioned that. All of my doctors had been GP's and they knew very little about diabetes. No doctor had suggested alternating sites. Maybe my doctors in the 1990s assumed I knew about this since I had been type 1 for 50 years at that time. In the new century I was using basal and bolus insulins, and doing as many as 8 injections every day. The toughness of my skin in my upper abdomen made it necessary for me to start using my lower abdomen and upper legs. It was common sense on my part that caused me to make that change. My blood sugar tests improved significantly, but I still did not know it was because I had moved away from the toughness in my upper abdomen.
In 2007 I started using a pump, and things were going very well until I tried my upper abdomen. I got a 'No Delivery' alarm on my pump and did not know what that meant, so I called the Medtronics help line. After a long discussion it was decided I had scar tissue. That was the first time I had heard those words. A very young sounding lady at Medtronics made that diagnosis, but my doctors had never mentioned it. This made me very angry, and it has taken me a long time to stop feeling bitter about it. At least one doctor should have told me about site rotation. I have permanent scar tissue in my upper abdomen, and can never use it again. The skin will always be tough, and the insulin absorption almost nonexistent. I tried using my upper ab earlier this year, and saw very high blood sugar in the next few hours. I am presently using my lower ab and upper legs, rotating infusion set locations. If I don't change sets after three days I start seeing high blood sugar. That is because scar tissue is beginning to form there. I keep the sites about two inches apart, and change every three days. I have now had A1c's in the 5.5-6.4 range for almost twenty years. Finding someone who told me about scar tissue has greatly improved my control. I will never know how I managed to avoid diabetes complications for the many years that I was not rotating sites, and having so much high blood sugar. I have some neuropathy, but my overall diabetes health is very good. That almost seems like a miracle to me.
I hope that my online friends with diabetes do rotate sites, and use different body parts to avoid scar tissue.
The diagram below shows my A1c's, starting in 1980. The higher A1c's at the beginning were partially due to my scar tissue problems.

Friday, August 11, 2017

Wednesday, August 9, 2017

Born With Diabetes

I have a Facebook friend who lives in the UK, and she was born with diabetes. That is called "neonatal diabetes". She was diagnosed four days after she was born. She weighed 3 pounds at birth, and weighed only two pounds soon after after birth. I was so impressed with her report in the Facebook group called "The Insulin Gang", a UK group. She gave me permission to post her story here.
"I was born with diabetes. My actual type is the rare neonatal
diabetes mellitus, which again can be a factor according to the
consultants. My show off moment is that I made medical history by (1) being born with DM and then (2) surviving past the first few months. Then again 46 years ago was the medical equivalent of the dark ages and the medics didn't think it was possible for someone so young to be diabetic, so they didn't test me for diabetes. Because I was fitting, they decided it was epilepsy and pumped me with more sugar (really helpful that one). In fact I was on my way out when a doctor who was diabetic herself decided she'd come to see the baby who was causing all this bother and it was her who said test me for diabetes. Without her I'm pretty certain I wouldn't be here now. There was a paper written in The Lancet when I was a baby.
I always needed to have a lot less insulin than was "normal". I'm not sure if the medics got to the bottom of this scientifically but it was regularly noted and mentioned. That actually makes sense too, that there's some (if a little) of my own home made insulin going around. Also I have seen a medical report that says too low hba1c is harmful, and there's a range that's just right. Sounds a bit like bears and porridge, too hot, too cold, just right.
My keeping me at that limit good hba1c range is always my goal (and happily I can do that). My reactions aren't normal either, for instance most T1s get really high blood sugars when stressed. If I get too stressed then my blood sugars go too low - that's why I use meditation and mindfulness to help with the stress management, which helps the diabetes. My paediatric diabetic consultant used to do talks about what "most" T1 children did and she used to think "and then there's Louise". I just think that I'm blessed having been born with NNDM because it seems to have helped me, for whatever reason that is. I do also give myself a huge pat on the back for owning my diabetes, working with my diabetes and having it part of me.
It is really nice for folk to actually take notice of my weird and wonderful background. I've had (idiot) doctors say that they don't believe me - I put them straight - why would you make this up! . Thankfully all of my consultants have been good ones."
With online research I found the following information about neonatal diabetes (NDM):
"NDM is a monogenic form of diabetes that occurs in the first 6 months of life. It is a rare condition occurring in only one in 100,000 to 500,000 live births. Infants with NDM do not produce enough insulin, leading to an increase in blood glucose. NDM can be mistaken for the much more common type 1 diabetes, but type 1 diabetes usually occurs later than the first 6 months of life. In about half of those with NDM, the condition is lifelong and is called permanent neonatal diabetes mellitus (PNDM). In the rest of those with NDM, the condition is transient and disappears during infancy but can reappear later in life; this type of NDM is called transient neonatal diabetes mellitus (TNDM). Specific genes that can cause NDM have been identified.
Symptoms of neonatal diabetes (NDM) include thirst, frequent urination, and dehydration. NDM can be diagnosed by finding elevated levels of glucose in blood or urine. In severe cases, the deficiency of insulin may cause the body to produce an excess of acid, resulting in a potentially life-threatening condition called ketoacidosis. Most fetuses with NDM do not grow well in the womb and newborns are much smaller than those of the same gestational age, a condition called intrauterine growth restriction. After birth, some infants fail to gain weight and grow as rapidly as other infants of the same age and sex. Appropriate therapy improves and may normalize growth and development."

Wednesday, August 2, 2017

Retirement and Living With Diabetes

I was employed as a teacher at the college level for 34 years (1963-1997). I had complications with my diabetes, and had to retire several years earlier than I had planned. Two years after retirement my health problem was resolved. I was diagnosed with insulin resistance, and I started taking an oral medication to help with that. My former position at the college was filled, and I was no longer needed as a full-time teacher. After retirement I taught part-time for several years, and did a lot of carpentry work and painting on my home. My strength was gradually declining, and I had too little energy for strenuous activities. I felt like a fish out of water, and was very bored much of the time. Retirement did not seem to be as great as I thought it would be.
As a teacher I did not earn a lot of money, but the fringe benefits were very good. My wife and I financed our two sons while they were in college, until they had MS degrees. We were heavily in debt by the time they graduated. Gradually we paid off our debts, and our financial situation was stable. There was too little money for traveling like I had always wanted to do. My wife did not want to travel, she was perfectly happy staying at home, and taking one trip each year to see our sons and our two grand children. I wanted to do so much more, but we could not afford it.
In 2006 I discovered a diabetes support group online at The support group there was a new found hobby for me. I soon joined other diabetes websites, and made many friends. Sharing my diabetes experiences with others was very rewarding. I helped my new friends, and they helped me. I was the only long term type 1 diabetic in most of the support groups, with more than 60 years of diabetes. My friends encouraged me to write a book about my life with type 1. That book was published in March, 2010. I was pleased with the hours I spent each day with my friends. I joined Facebook in late 2010, and found many more diabetes support groups. The parents of diabetic children were encouraged to find a long term type 1 diabetic who had good diabetes health. In July, 2013, I attended the Friends For Life Conference in Orlando, FL. It was a wonderful experience. So many great discussions, pictures taken with friends, and good food. My wife went with me to the FFL in 2015. I was a speaker that year, and I want to do that again.
More recently, health problems began to emerge. My wife needed a knee replacement in 2009, and in 2013 I had one of my knees replaced. My wife and I have arthritis, which slows us down, and makes many activities difficult. We don't know how much longer we can make those flights to Atlanta to visit our children. Our sons are very busy with their jobs, and they find it difficult to visit us each year. We live in New York, so we are are not physically able to pack up all our belongings and move south to Atlanta.
Without the online activity and communicating with my friends, life would have become incredibly boring. With my good health, working out at the gym, taking long walks, and my online activities, I am very content. I also do a lot of projects keeping our home in good shape. My wife is very happy tending her flower gardens, spending time with her hobbies, and communicating with the neighbors. We have been married 53 years. Now, after 71 years of type 1 and at age 77, my diabetes health is still good. Retirement is good, for both of us!!

How I Deal With Low Blood Sugar

When my BG drops slowly, my body has time to adjust, and I don't feel the lows until I am below 50. When I drop fast, my body does not have time to adjust, so I feel the low in the 70's, and sometimes in the low 80's. When I treat, I see how many points I need to reach 100. I divide that number by 3 since that is how much my BG will typically rise for each carb I eat. If I have insulin on board from a previous bolus, I take that into account. Then I know how many fast acting carbs I need. I am so used to doing this that I can determine the number of carbs I need very quickly. The result may not work exactly as planned, but it rarely results in a very high BG after treating. This routine is much better for me than "eating the whole contents of the fridge" like some people say they do, lol. Some people say they go to the kitchen during a low, and that will sometimes involve going downstairs. I have even heard people having a low that is so bad that they have to crawl to the kitchen. Why do people do that? Please keep some fast acting carbs with you at all times, especially within easy reach at night. Glucose tabs, jelly beans, etc. I have a zip-lock bag of jelly beans or Skittles in my pants pocket when away from home, and I always have glucose tabs or fast acting candy within reach when at home.
I am using a Dexcom G4 CGM now. I can see oncoming lows, and eat some fast acting carbs before I have a hypo. That is so much better than having a hypo, and treating before my BG goes dangerously low.