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!!

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?

Scar Tissue and Insulin Absorption

When I was diagnosed in 1945, 67 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. 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 very experienced 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 one and a half inches apart, and change every three days. I have now had A1c's in the 5.5-6.4 range for almost ten years. Finding someone who told me about scar tissue has greatly improved my control. I will never know why 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 mild nerve damage, but my overall diabetes health is very good. That almost seems like a miracle to me.

I have frequently advised pumpers to rotate sites, and not use a site longer than three days. Most of my friends who pump are doing that, but I have met online pumpers who say they are using an infusion set for more than three days. One pumper says he uses sets for as much as a week, without having problems. I did not think that was possible. To keep scar tissue problems from occurring, and poor absorption giving very high sugar results, I strongly advise all pumpers to rotate sites, and avoid using a site more than three days.

I feel so lucky to have avoided serious complications after experiencing scar tissue and high blood sugar for so many years. I wish I could meet the young lady at Medtronics, and give her a big hug! lol

Joslin Medalist Meeting, May 11, 2013

The 2013 Joslin Medalist meeting was held on May 11. There were more than 150 medalists present at the meeting. Every medalist has been type 1 for 50 years, or more. I was not able to attend because my wife was ill. She is well now. The link below connects to a video on Youtube. Medalists speaking at the meeting are shown. One medalist received the first ever 80 year medal. See him at the beginning of the video. 

https://www.youtube.com/watch?v=xHa8SFkICzo

A Mother's Day Poem

Mother's Day Poem to all you Wonderful D-MOMS!

A poem in memory of the author, Gary Hempleman, for all children with diabetes.

She walks down the hallway in silence so deep,
Keep watch over him, as her little one sleeps.
With meter in hand, she opens his door,
Making sure not to wake him as she crosses the floor,
She sits on his bedside and brushes his hair,
As he dreams of shooting baskets, without a "D" care.
She holds his hand softly; his fingers so small,
As she watches and wonders why "D" came to call.
While she watches him sleeping, so peaceful and warm,
The forces inside him fight a constant "D" storm.
Will he ever be free of shots and blood testing?
She sits and she wonders as she watches him resting.
The beep of the meter breaks the silence of the night;
A small drop of blood tells if everything's right.
The seconds count down to the final display,
I hate this damn meter; i want to throw it away.
The number is fine, one down, a lifetime to go,
As he turns in his sleep, will he ever know?
Why does this "D" happen to someone so small?
My son is my hero, but my baby most of all.
She turns at his doorway, looking back one more time,
It's a nightly routine of the very worst kind.
She walks down the hallway and time passes by,
As she sits in dark silence and quietly cries.
I have to stay strong, and for him i will fight,
We'll battle this "D" with all of our might.
I'll teach him to master and conquer this foe,
This "D" will not stop him, i promised him so.

In Praise of Moms of Type 1 Kids

My Facebook friend, Linda Palmer, wrote the following blog today. I think that all the moms of diabetic children should have the opportunity to read it.

"As Mother’s Day quickly approaches, I thought today would be an excellent opportunity to talk about the lifelong influence a mother has on her children. I read stories every day on facebook from the Diabetic Online Community (DOC) about the sacrifice moms make for their Type 1 Diabetic kids. These are terrific moms who would walk on hot coals if they thought it would help. Each and every one of them would take on their child’s suffering if they could. They would trade places with them in a heart beat! That’s a mother’s love – and there is no substitute for it!

Today is NATIONAL TEACHER’S DAY but I want to recognize the mothers of Type 1 Diabetic children. They are so diligent, and in the process they are sleep deprived and frustrated with the disease, but they have their kid’s backs! They will be there if the world walks away. All moms are great, but the mom of a Type 1 Diabetic is a Super Hero!

God gave you these wonderful children
To love on with all of your heart.
They'll grow to be fine men and women
Because you cared for them at the start."

Here is Linda Palmer's Facebook page:https://www.facebook.com/groups/513736392026588/

My Marriage, and My Diabetes

I was diagnosed in 1945, when I was 6. Nineteen years later I married a wonderful lady named Anita. We will celebrate our 49'th anniversary on May 31. We were married in 1964 when very little was known about diabetes. She knew absolutely nothing about it, and she had no relatives or friends with diabetes. There were no meters to determine my BG levels until the mid 1980's. She had to adapt to my having bad hypos and seizures, while keeping her cool and taking wonderful care of me. I knew I could depend on her, and she depended on me. Our love for each other is first rate. At the present time she cooks for me, tells me the number of carbs in my meals, and watches me so carefully. With all the modern day devices and knowledge about diabetes, I have not needed her assistance with lows or highs since I started pumping in 2007. My control is great. The bad lows I had in the past scared her so much that she still has me test during the night at 1 and 4 AM. I don't have bad lows at night now, but how can I say no? She probably saved my life when I was unconscious with lows many years ago. I do not complain, I test at night, and many times during the day to keep her happy. Now I have been type 1 for 67 years and I have good diabetes health. My wife has helped me to be in such great shape today.

In October, 2012, I fell and hurt my head. Bleeding on the surface of my brain was diagnosed, and surgery was performed for subdural hematoma. I recovered from that, but then X-rays on my knees showed that they both need to be replaced. My wife had a very hard time with all that has recently happened to me and she has been very stressed. She was very rundown and developed a bad cough that led to acute bronchitis. She is recovering, but she is having difficulty regaining her strength. We have decided that her stress over my health problems has led to her present condition. I am doing everything I can for her, and we hope that she will be strong again, so she can have a good summer. She loves working in the yard and her flower gardens.

Having Anita for my wife is the best thing I have had going for me during my life with diabetes.