Friday, April 3, 2020

My Diabetes History...From The Beginning

I have many new friends who have not read my story. I am starting from the beginning with this post.
I didn't remember some of the content, but discussions with my Mother many years after my diagnosis helped me fill in the gaps. I remember those conversations very well.
My diabetes, in the beginning…
In 1945 I started school in the first grade, the next day after Labor Day. I did not feel like going, but my parents wanted me to go even though I was only five years old. I was six years old during the second week of my school year. I felt sick in my classroom, and I was not paying much attention to the teacher. I just wanted to go home, and stay there. The steps on the school bus were steep, and it was hard to climb them because I was feeling weak.
Several months previously, I had chickenpox. Then I had mumps. While I was recovering, I stopped wanting to eat, and I started losing weight. Mother and Daddy took me to our family doctor, but he did not know what was wrong with me. He had us get a tall bottle of brown stuff, and I was supposed to have some of it a few times each day. It was supposed to give me an appetite, and make me want to eat, but it did not help. Not at all. We saw two other doctors, and they did not know what was wrong, either. My Mother made an appointment with a fourth doctor. We hoped so much that he could help me.
My sixth birthday was on September 10. I did not want to eat any cake, or anything else. I was feeling very sick, and I didn’t have an appetite. Mother kept giving me things to eat, but I refused to eat them. I was very weak, and I was having a hard time walking. I had lost a lot of weight. I drank so much water, but I was still thirsty. Peeing so much!!
A few days after my birthday, we went to see the fourth doctor, Dr. Williams. His office was upstairs in an old building in Salem, Va. It was a very long flight of stairs. I was so weak that it was difficult to climb the stairs. Daddy carried Shirley, my little sister, up the steps. She was two years old. Mother walked beside me, and tried to help me up the steps. I had to stop and rest some, my heart was beating so fast. We reached the top of the stairs, and walked down a long hall. The doctor was in his office, and Mother and I sat down in chairs. It felt so good to sit down. Daddy stood in the doorway behind us, still holding Shirley.
We had my blood tested several days before seeing the doctor, and he had the results. He gave us some bad news. He said I had diabetes. I looked at Mother, and she was very pale. I could tell she was very scared about what the doctor was saying. What is diabetes? Is it serious? I was scared too!! The doctor said a lot more, but I don’t remember any of that. Mother’s face scared me, and I just wanted to go home. I do remember the doctor saying I had to go to the hospital. It was late in the day then, and we waited until the next morning to go to the hospital. Another doctor was supposed to meet us there. We hoped he would help make me feel better.
I had been to a hospital twice before. The first time was to have a hernia removed from my right side. I was four years old then. Later that year I had my tonsils removed. I had a terrible sore throat for a long time. I was so glad when my throat was better, and I could eat again. When I went to the hospital for diabetes, I knew I would not have surgery. I was so glad about that! I was also glad that I would not be going to school for awhile. Maybe I should not have started school that year.
I was taken to a room in the hospital. Dr. Davis came to the room and talked to us about diabetes. I was given something called insulin, and the doctor said it would make me feel much better. I liked hearing that, but the very long needles they used hurt me so much! I had lost so much weight, and my arms were so skinny. The shots were given in those arms. After a few days in the hospital, I had an appetite again. I ate some food in my hospital room, and before I went home, I was gaining some weight. I felt stronger, and walking was much easier. Dr. Davis told us that I could eat anything I wanted, and as much as I wanted, if it did not contain sugar. There were no other restrictions. I loved Dr. Davis!!!
The first few days at home were difficult for me, and my parents. When I got up each morning I had to pee in a cup. Daddy had a big test tube containing some blue liquid called Benedict’s solution. He put a few drops of my urine in the test tube, and then put it in a tin can on the stove. There was some water in the tin can, and we waited until the water boiled for awhile. When the test tube was removed, we could see the color of the solution. If it was still blue, I did not have any urine sugar. If it was green I did have sugar in my urine. The other colors that showed even more sugar were yellow, orange, and red. The red color meant that I had very high sugar level. I hated red, and felt much better when I had blue or green.
I used insulin that was taken from the bodies of pigs and cows. The amount of urine sugar determined the amount of insulin I needed each day. Daddy put the insulin into a big glass syringe, and then he twisted a needle onto the tip of the syringe. The needle was about three quarters of an inch in length. Dr. Davis wanted Daddy to inject the insulin into the muscle on my very skinny arms and legs. The insulin was not fast acting, and injecting it into muscle made it work faster. The injections really hurt a lot!! The needles were very thick, and long. The insulin was a 24 hour insulin, and I did not have another injection until the next morning.
The syringe and needles were placed in a jar of alcohol, until the next morning. After a week had passed, the syringe and needles were placed in a pan on the stove, and boiled, to make them sterile. We had a well on our property that supplied our water, and there was some lime in the water. The lime left a white coating on the syringe and needles. Sometimes the lime deposit clogged the needles, and Daddy had to take a very fine wire and push it through the needle to unclog it, before loading the syringe with insulin. The needles were wide enough for the wire to be pushed through. There were also times that a deposit appeared on the outside of the needle, near the tip. Daddy had to remove the deposit by using a whetting stone. If we did not notice a deposit on the needle, and it was pushed into my skin, it made a popping sound, and that hurt so much!
After a few days at home, I returned to school. I was feeling much better, and I was strong enough to easily climb onto the bus. I could pay attention to the teacher, without any problem. I had missed several days of school, and catching up was not easy. Mother went to the school and had a discussion with the teacher. The teacher had never heard of diabetes. Mother told her that I should not play with the other kids in the gym, or on the playground. The activity could cause my sugar to drop too low, and I could have an insulin reaction. Mother tutored me at home. The teacher told her what lessons had been covered while I was in the hospital. Mother was a very good tutor!
That is the way it was, for many years. We did not know about diabetes complications. Test my urine before breakfast, take my morning insulin, avoid sugar and don’t play too hard. That seemed simple enough. No worries. Everything was good. I wonder how things would have been if we knew about the potential complications, and the true nature of diabetes.
The first picture below shows my family in early 1946, less than a year after my diagnosis. The second picture shows the kind of glass syringe I used for many years. The third picture gives you an idea of the length of the needle I used, as compared with the very short and thin kind of needle some people use today.

Saturday, March 21, 2020

Managing Diabetes During Covid-19

Baptism by fire, and managing diabetes during Covid-19 in Seattle.

An endocrinologist is interviewed in the Seattle area. This is a very good article on dealing with diabetes patients, without seeing them in the doctors' offices.

This is a four page report. The first page is mostly an introduction. Click on pages 2, 3 and 4 on the left hand side near the bottom of the pages.

Tuesday, March 17, 2020

Doctors and A1C's

Doctors and A1c's
My A1c's have been in the 5.4-6.4 range for almost 20 years. My internal med doc wanted me in the 5.5-6.0 range, and he wanted me to avoid lows. That is impossible, but I never convinced him. Then I started seeing endos in 2007. They wanted me in the 6.0-6.5 range, without lows. That is certainly more feasible, but I still have some lows. My previous doc does not like the A1c's now being greater than 6.0. My endo likes my current A1c's, but she thinks I can avoid lows. I cannot satisfy either doctor. I just sit there and smile. They smile back at me, and write my prescriptions. Then we wish each other well, and that is how all my office visits go. I have been my own doctor for many years.

Wednesday, March 4, 2020

My Book Published in 2010

I was diagnosed with diabetes in 1945, when I was 6. I published my book in 2010 after completing 64 years with type 1 diabetes. You can find the book on Amazon.

Wednesday, February 26, 2020

My Early Years and Blood Sugar Management

My Early Years, and Blood Sugar Management

Throughout my early years as a diabetic I had no major health problems, and I coasted along rather easily. I was always very skinny, maybe slightly underweight, until many years later. I had high urine sugar every day, and usually at night. There were, however, some nights that I had very bad hypos. My bedroom door was always left open at night, and my room was immediately across the hall from my parent's room. Mother was keyed in to my thrashing about, and the moans I would make when having a hypo. She would jump out of bed, and grab the glass containing several tablespoons of sugar. She stopped at the bathroom, partially filled the glass with water, stirred the mixture with a spoon, and entered my room. Daddy raised my body, sat on the bed behind me, and held me while Mother slowly poured the sugar water into my mouth. That usually worked very well, but occasionally my mouth was shut so tightly that she could not get any of the liquid into my mouth. Some of these hypos were very bad, and they became seizures. It took a long time to get me to the stage that they could get me to drink some of the sugar water. She would rub some of the liquid on my lips, and I would lick my lips. This gave me just enough sugar so I would start to relax, and then she could get me to swallow some of the sugar water. I would come out of these hypos, not remembering any part of what had happened. Mother gave me all the details the next morning, and again when I was preparing to write my book. I was always so grateful that they took such good care of me at those times. I have no idea how many of those seizures I had before I was an adult, but I know there were many of them. If we had meters for testing, basal and bolus insulin, and carb counting, things would have been very different. There may have been less serious hypos, without the terrible lows that caused seizures. The animal insulin I used for my first 50 years was neither bolus nor basal. It worked at the same level all day, and all night. I think that level was too much at night, and that was probably the reason I had low blood sugar so many times while I was sleeping. That insulin was a 24 hour insulin, with only one injection each day. There was no way of having different dosages with different levels at different times of the day.

To prevent hypos at school, I was not permitted to play with the other kids during play periods or gym. It was that way in grades 1-12. I played at home with a neighborhood friend, but Mother kept a close watch on me. I was usually able to feel my lows before they were so bad. I would tell Mother, and she would give me some sugar. I carried a small container of sugar with me while in schooI. I was never given candy. I think my parents did not want me to know the taste of candy, and other sugar sweetened things. There was never any ice cream in the house, and I assumed there was never any candy, but several years ago my sister told me an interesting story. When we shopped at our grocery store, no candy was purchased. Daddy stopped on his way home from work in the late evening, and bought candy. It was stored very high in a kitchen cabinet. I never saw it. My sister was given a candy bar, and she would eat it in the kitchen. If I entered the kitchen while she was eating candy, she would hide the candy behind her back, with her back against a wall. I never became suspicious. She waited more than 50 years to tell me that. I'm glad she got to have candy, and I am glad I never tasted it. There was artificially sweetened candy that we bought back then. I think the companies selling the candy were Diamel, Loeb and Estee. It wasn't so bad, I still remember the taste. Sweet story, sweet sister, sweet candy. HA!

When I had just started eighth grade I had intestinal flu. I stayed at home several days, and I could not keep anything in my stomach, not the medicine the doctor had prescribed, not even water. My parents thought that since I was not eating then they should not give me insulin. They were afraid I would have a hypo. They did not check this out with the doctor. After several days of no food, no water, no medicine and no insulin I was so weak I could not lift my arms, and I was barely able to move my head. I think I must have DKA at the time. The doctor came to our house, and called an ambulance. I stayed in the hospital almost two weeks. I recovered very well, and returned to school. I hope that those of you reading this know that you need your insulin even if you are not eating. You still need your "basal" insulin under these conditions, but you do not need your "bolus" insulin if you are not eating.

After Anita and I were married in 1964, I was still using the animal insulin. My control was better, with fewer lows, but there were some nights that I had bad hypos, and a few seizures. Anita learned how to handle those lows, and she did a wonderful job. In the 1980's she had to call the local paramedics. That happened three times, and I was given injections of glucagon. The first time I was taken to the hospital, but not the other two times. After the injections I was immediately able to stand up and walk around. It is amazing how fast glucagon can work. On the other two occasions the paramedics let me sign a form that gave me permission to stay home, and avoid going to the hospital.

In the 1990's I started using Humalog, and carb counting. I had a meter for testing my blood sugar at home. My control improved so much! In 2007 I started using an insulin pump, and my control improved even more. I stopped having very low blood sugar. The lows I was having then were not bad enough for me to need any assistance. Anita, however, has memories of how it used to be. She watches me like she did back then. She cannot sleep well unless I tell her my blood sugar level at 1, 4, and 7 AM. That disturbed my sleep a lot for many years, while having to do a finger stick three times during the night. It was difficult to fall back to sleep some of those times. It is so much easier now with my CGM. I can look at the CGM, give her the number, and then go back to sleep. No problem!

I have never been upset with Anita for having me do those night checks. She had to put up with so many hypos at night in the first four decades of our marriage, and she never complained. She never showed any signs of panic, or aggravation with my lows back then. She may have saved my life on some occasions. I love her so much for doing her job, and doing it well. She has painful memories of how it used to be, and my giving her my numbers during the night is the least I can do for her. I will never complain. Never!!

Saturday, February 22, 2020

The Way It Was in 1957

I graduated from high school in 1957. The following comments describe the time in which I lived back then. I hope you can enlarge the photo and read it. This makes me feel very old, but being old is not so bad. lol

Sunday, February 16, 2020

Allergic to Insulin

I want to introduce my good friend Linda Lee Corbett Mann. On Facebook she is known as Linda Lee. I first met Linda online in 2007 in the and diabetes support groups. We have had many online discussions. Now we have discussions on Facebook messenger. My wife and I met Linda in November, 2009 in Boston. We had dinner together the evening before I participated in the Joslin Medalist Study.

Linda was diagnosed with diabetes in 1974, when she was 12. She was then diagnosed with an Anaphylaxis Allergy to insulin. The allergy has caused her to have many problems and complications during her 45 years with T1D. She has given me permission to post her story. Here is Linda's story.

"May I just say, Stress releases cortisol and causes much havoc with BS control no matter what your goals are. Then there are some people whose bodies reject insulin. I have lived 45 years with T1D and many complications are part of my life. I am not making excuses. Some of us try to use the right medical therapies for ourselves and follow the advice given by our Endo teams, but we have few positive results. Double Digit A1C’s has been my life. I know some of you may not believe how I survived for 45 years like this. I am alive and functioning well with my complications. If you look at me, I look like all of you who have a good A1C range.

Living a long life while having many complications is a blessing to say the least. Frame of mind and a positive mindset helps for sure. I have been in many diabetic studies thru the Joslin Clinic, Johns Hopkins and Harvard Medical School. I am even in a PDR -Physicians Drug Reference book.

By all rights living with a life threatening Anaphylaxis Allergy to insulin should have killed me in my teens. I have experienced several diabetes complications, including renal failure, and two heart attacks after my bypass CABG and 2-3 Sepsis. I am Legally blind with Proliferative Retinopathy.

Long story yes, but it must be told that YES, poor control can kill you earlier. It also has to do with who, how and where treatment is had. You must stay abreast of the studies and have a Positive Mind Set, with Excellent Doctors.

We all have a story to tell about our lives with Diabetes. As Richard knows I don’t take a 'No there is Nothing We Can Do for You' as an Answer to a Medical Problem. I have by far outlived what All the doctors have told me thus far!

I have grown to accept my story of T1D. The reason I wanted to stay private initially was that most people responded in disbelief to my having an anaphylaxis allergy to insulin and surviving. It hurt me because I LIVED through the testing and the studies and their method to help resolve my problem. Initially I was sensitive to negative criticism. It felt like some people thought I made it up. I hope that my story will help or encourage someone to be stronger and adapt to their situation in living with T1D. I wanted my story to be told.

Throughout the years one doesn’t need the perfect home or life and perfect numbers as a result to their diligent work. Just continue trying to gain control and working at it the best you can. It makes the setbacks real and gives you strength to continue the fight to stay as healthy as you can be."

Linda is legally blind, but she is able to tell her story. She presently lives in Maryland and she is the mother of two wonderful daughters. Her favorite hobby is boating on the rivers and the shore of eastern Maryland. She is currently active in training young dogs.

There are many links to insulin allergies. The link below gives a good summary of the different types.

Saturday, February 15, 2020

Doctors' scales....Are they Accurate?

I see two different doctors several times each year. My endo and my GP. Their scales always show a weight that is 5 or 6 pounds more than my scales at home. This could mean that my scales show weights than are 5 pounds too low, but I have decided that their scales have purposely been set to show 5 pounds heavier than the patient's true weight. 😠That's my story, and I'm sticking to it! So there!! 😏

Tuesday, February 11, 2020

Autonomic Neuropathy

Autonomic Neuropathy (AN) is more common among diabetics, and is especially common after 25 years of diabetes. Here are the more common symptoms from the Mayo Clinic:
" Dizziness and fainting upon standing caused by a drop in blood pressure.
Urinary problems, including difficulty starting urination, urinary
incontinence and an inability to completely empty your bladder, which can lead to urinary tract infections.
Sexual difficulties, including problems achieving or maintaining an
erection (erectile dysfunction) or ejaculation problems in men, and
vaginal dryness and difficulties with arousal and orgasm in women.
Difficulty digesting food, due to abnormal digestive function and slow
emptying of the stomach (gastroparesis). This can cause a feeling of
fullness after eating little, loss of appetite, diarrhea,
constipation, abdominal bloating, nausea, vomiting, difficulty
swallowing and heartburn.
Sweating abnormalities, such as excessive or decreased sweating, which affects the ability to regulate body temperature.
Sluggish pupil reaction, making it difficult to adjust from light to
dark and causing problems with driving at night.
Exercise intolerance, which may occur if your heart rate remains
unchanged instead of appropriately increasing and decreasing in
response to your activity level."
My neurologist diagnosed my AN in 2010 after I had mentioned extreme dizziness in the AM, and my occasionally falling down. My BP was dropping as much as 40 points when standing up in the morning. Cutting my BP med to half doses has helped, but my BP is still irregular in the morning. I have four of the seven symptoms listed, and they are gradually becoming more pronounced. Gastroparesis is one of the symptoms, but I do not have that problem at the present time. I hope I never do. 3
Do you have AN, or do you think you do?