Nechama Cohen: Dynamic. Determined. Diligent. Certainly not “Diabetic.” Yet her dramatic encounter with the sudden onset of diabetes changed her life, setting her on a path to help herself and thousands with the founding of the JDA- Jewish Diabetes Association
1985, One Day Out of The Blue
One day, out of the blue, I got very thirsty. I just had to have bottles and bottles of water with me. I was on a monitored weight loss program and they were very, very happy with my progress. As I started losing weight so beautifully I started eating more. The more I ate, the more weight I lost, the thirstier I became and the more I needed the bathroom.
Now this continued for a couple of days. Being such a strong willed person, I tried not to allow this to slow me down but I was starting to feel very weak. My eyesight was blurry. I had been walking a lot and I stopped walking. I felt like I was rapidly deteriorating. I had had two car accidents because I was totally confused. By Shabbos I couldn’t get out of bed.
Sunday morning I realized I needed a doctor fast.
It is very hard to find a doctor in New York on a Sunday. Finally I reached Dr. Miller who immediately said to me, “You know Mrs. Cohen, this sounds like diabetes.”
“Diabetes! Why would I have diabetes?”
I was thirty-five, overweight, and yes I knew of some people in my extended family who had diabetes, but who doesn’t have relatives with diabetes. I went to his office, he did a simple test and yes lo and behold- it was diabetes! He basically gave me a pill and told me, “Go home, you’ll be fine.”
I took my pill, went home and I was anything but fine. I kept getting worse and worse. I couldn’t get out of bed.
When I went to the doctor I had forgotten to bring my insurance forms, A few days later I went back to his office with the forms. I walked in and leaned against the wall. Shoshie, the nurse, looked at me and said, “Nechama, how are you feeling?”
“I think I’m dying!”
She looked at me more closely and said, “Don’t move!”
She ran in to Dr. Miller screaming, “Come quick, Nechama’s dying!”
He ran out and said, “Nechama, what’s the matter?”
He ushered me into his office, sat me down and said, “Tell me what you’re feeling. Are you taking your medication?"
“I’m dried out completely no matter how much I drink, my eyes are blurry, I’m confused, I’m not walking, driving or doing anything and I have terrible itches.”
He sprang up and quickly grabbed an oversized medical reference text from his wooden bookshelf. After two minutes of intensive scrutiny, my doctor looked up and said, “Nechama, I’m sending you to the laboratory for a blood test. After the test, go right home and I will call you.”
A Medical Comedy of Errors
Within the hour he called.
“Get to the hospital immediately. They are waiting for you.”
He met me in the emergency room.
“Dr. Miller, what’s wrong with me?” “You have diabetes.”
“I know I have diabetes. You told me that last week, what’s wrong with me”
“No. It’s much worse than we thought.”
At that point I felt I was slipping away either into a faint or into a coma. They rushed me into the intensive care unit, hooked me up to all sorts of tubes and monitors and hovered around my bed.
After some time my doctor said, “Nechama, I don’t understand how this happened but you have juvenile diabetes.”
There I was, the mother of five children, the oldest ones, my twins, were twelve. My youngest was 1 ½. I felt my strength ebbing away. My legs were having horrific cramps because when the body is not burning up carbs it is burning up fat and the by-product of that is ketones. The ketones had built up in my blood and I was being poisoned.
I had lost a lot of water and my sodium potassium levels were dangerously low. I was put on a potassium drip, which was very painful.
The first piece of medical advice was, “Nechama, you must eat potatoes. They will raise your potassium and then we can take you off the drip. Here I am, in ICU, with my family and aunts bringing me baked potatoes. In the meantime, the nurses began teaching me how to test my blood sugar.
At that time in recent medical history, the equipment that was available for testing blood sugar levels was primitive at best. In that hospital, all I could do was use a dip stick with a drop of blood and after sixty seconds, hold my stick against a comparison color chart to approximate the level of sugar in my blood.
No matter what they did, my blood sugars were just not stabilizing. I knew absolutely nothing about diabetes. A visitor showed up who had diabetes. With very good intentions he took it upon himself to educate me about handling the daily regime. This person already was coming to the hospital three times a week for kidney dialysis.
After he had left, I said to my husband, “It was very kind of him to come here but this is not the person I would like to learn from. This is not what I want to happen to me. I do not believe that this has to happen. I do not know anything about diabetes but I do not believe that this is inevitable.”
What did I have to look forward to? (G-d forbid) Blindness, kidney transplants, toe and foot amputations, cardiac complications, and higher risk of stroke. There is virtually no body system that is not adversely affected by diabetes.
When you add sugar to a cup of liquid, it becomes extremely sticky. When you add sugar to your blood, it gets just as sticky. The veins going to the eyes are tiny, little veins, the arteries and veins going to the kidneys are small.
Glucose always travels with a partner of H2o (water) in and out of the cells. When you have the glucose entering the cells the way it is supposed to, you body is functioning properly, the cells are lubricated, and the body is nourished. When the body has no insulin, you have the glucose building up in the blood, the kidneys start working overtime and there is water loss and extreme thirst.
Twenty years ago, diabetes specialists were actually afraid of controlled blood sugars because they were afraid of the level getting too low. If the level got too low you would faint on the street and too high over long periods of time you would develop complications.
I had a bleak future to look forward to.
After five days of potatoes in the intensive care unit, a friend of a friend told us about the Joslin Institute in Massachusetts, which is the in patient diabetes clinic of Deaconess Hospital. I requested to be transferred.
“Why do you want to be transferred, Nechama, we are doing so well.”
“No, “we” are not doing well at all. I’m eating potatoes and you don’t have a handle on what’s going on with my blood levels and I am getting out of here!”
We got everything mobilized, including the paths of protexia from within the orthodox community. Before I left, one of the doctors on the team came to me privately and said, “Nechama, when you get back, please tell me everything they teach you there.”
I was transferred by ambulance to the plane and then by ambulance in the Boston airport to the hospital. I landed in Deaconess on the eve of the 25th of December, a very famous holiday. There wasn’t a doctor or nurse to be found. Finally this night nurse walks in and hands me a thick book saying, “Hi, Nechama, you need to read this book tonight because tomorrow morning you will have to tell me how much insulin you need.”
Sitting on the bed, book in my hands I took a look around. One of my roommates was just after an amputation. Another was in a wheelchair. Somehow something inside of me refused to accept this as my fate. I am normally a very cheerful person and as I walked along the hospital corridor I kept repeating to myself, this is not the way it has to be, this does not have to be inevitable, something is wrong.
The next day the nurse came in and we began earnestly learning about types of insulin and blood sugar levels. Within two days I was under control and transferred to Joslin Clinic. They had the first blood glucose meter that was available that didn’t need chart comparisons. The meter itself gave the reading.
Joslin was where my real education in diabetes began. It was an inpatient clinic. You had to be dressed everyday and it was non-stop school. They preferred that you had a family member with you. They taught us how to live normally with diabetes. They took us out to kosher restaurants, to supermarkets, to shopping malls. I learned that just because a person has a 300 blood sugar level it doesn’t mean they need a wheel chair. It simply means you have to get your blood sugar down.
I realized how comical the prior two weeks had been.
I had been instructed to eat potatoes to raise my potassium levels. But once I had the insulin in my system and my fluid content had stabilized, my potassium levels were going to be fine. It was the glucose I should have been taking care of. Although the potatoes were full of potassium, the starch in potatoes rapidly becomes simple sugar in the body. My blood sugar levels were going crazy because of all the potatoes I was eating!
I was in Boston. I was in the best place I could possibly be in. I was getting my first real education in nutrition, as much as I had always been on a diet, I was starting to learn about proteins, carbohydrates, fats, how to make up your meal, how to figure out insulin amounts based on carbohydrate intake. I was fascinated.
My insulin regimen was of two shots a day. That was the accepted norm in those days. One shot of time- released insulin and before meals another injection of insulin that would cover my meals.
After ten days I went home. I decided it was time to finish college in social work and nutrition. Nutrition because I had to learn in depth about how to handle diabetes, and social work because I didn’t like the medical attitude. I was spoken to like a baby and given infantile responses to my questions.
But every single morning in school, I was feeling lousy. I was following instructions. They had taught me to test four times a day: my fasting blood sugar which was before breakfast, test before lunch, before supper, and before bed.
Every morning after breakfast, when I tested my blood sugar levels, I discovered that I was in the area of 300! I called my doctor in Boston, who was a wonderful, conservative, old- fashioned, phenomenal human being. He asked me, “Well Nechama, how are your blood sugars after lunch?”
“Fine.”
“Then don’t test after breakfast!”
“Do you have any idea what it is like to walk around with a 300 blood sugar when you are trying to concentrate?”
“But your blood sugars are fine before lunch.”
We started a process of back and forth phone calls. I tested after breakfast, after lunch and after dinner. I kept a lot of records and I did not like what I saw. They already had what we call a Hemoglobin A1c, an HbA1c. It is a blood test that gives us a three month average of blood sugars.
Our red blood cells live for 120 days and then they die out. Sugar/glucose attaches to red blood cells. This test checks to see on average of how much glucose attaches to the red blood cells. At that time the acceptable norm was an average of seven. I was taught that 7-8 is wonderful 8-9 is medium. 9-10 is poor and anything over 10 is unacceptable.
It didn’t really jive with the home tests. Today the meters give an average so we can track the blood sugar level from a long- term perspective also. As they started improving they started giving charts.
I put together a form and I started testing all my food. I called my doctor back and told him that I really wanted to change my system. This twice a day injection treatment model really wasn’t working for me.
“You know, Nechama, you really have to come back to Joslin.”
“Okay, after my final exams.”
One day during finals I wasn’t feeling well. I was feeling exactly the same as I did when I had been diagnosed. My blood sugars were high, I had ketones & I was told I had to go into the hospital. Walking out of the house, I said to my husband “ Please don’t forget my meter.”
When we got there I told them, “I have diabetes. My blood sugar is high and I am in ketosis. I need intravenous insulin.”
“Okay, Mrs. Cohen, well, we have to test your blood sugars, take your temperature, do a lung ex-ray, and take your blood pressure.”
“Why a lung x-ray?”
“Procedure.”
“There’s nothing wrong with my lungs. I need an insulin drip and I need it now.”
They started testing my blood sugars. I was patient until the third attempt. They were not getting it right. I pulled out my meter and started testing my own blood sugar levels.
“You can’t do that!”
“Really, who is stopping me?”
I showed them the result and said, “I need an insulin drip now.”
“But there are procedures!”
“Yes, I know there are procedures, but I’m not dying in the process!”
I turned to my husband and said, “Please give me my insulin.”
The nurse went ballistic.
“You can’t do that here!”
“Give me an insulin drip or I’m leaving.”
”You can’t leave. You have to sign papers.”
“Give me the release.”
I checked out of the hospital, went home and started giving myself small amounts of insulin and checking my blood sugar every two hours. Within twelve hours I had no more ketones and I was stable!
During intercession I headed back to Joslin.
I loved Joslin because I felt like I was in a cocoon. Everyone had diabetes, everyone was doing the same thing- education in the day, we sat and talked at night. We tested our blood sugars together, there was such a camaraderie. It was great.
I had finally realized that what had brought on my diabetes was stress related. At that point the medical system did not really have it down pat that diabetes could be brought on by stress, and that stress reduction could have a very positive effect on control and prevention.
I was meeting with different doctors, and showing them my forms. The head of the department told his colleagues, “You must talk to this woman and listen to what she is saying. She knows more about diabetes than we do!”
But I kept telling the doctor, “I’m not in good control.”
”You’re in great control. With you testing your blood sugars like this, and you HbA1c is an 8, it’s terrific!”
“But when my blood sugar is high I don’t feel well. I don’t call that in great control.”
I had started taking fast acting insulin before every meal because on my own I figured out that that is what my pancreas used to do. My pancreas used to give me insulin every time before I ate.
But my mistake was that I stopped taking my long acting insulin. That’s why I went into ketosis, but I didn’t know that then.
Although the doctors were very pleased and highly impressed, I was told to go back to two shots a day.
“Why?”
“Because that is how it is done.”
“I have no problem going back to two shots a day, if it will bring me good control. But it wasn’t getting me there. Listen, I’m doing something right and I’m doing something wrong, and I need you to help me.”
That night an article appeared on my pillow by a Dr. William Black. One of the nurses had put it on my bed. She didn’t want anyone to know that she had put it there. It was all about multiple injections. Can we get people in better control with multiple injections? I spent the night studying the article.
I waited anxiously for the doctors to make their morning rounds. As soon as the team walked in I announced, “Okay, Nechama Cohen is going on multiple injections.”
“No, Nechama, you can’t do that.”
“Why can’t I do that?”
“Because we give two shots a day.”
”This is absurd. People are different.”
”No one wants to have so many shots a day.”
”I do. I have a motto. I control my diabetes. It does not control me.”
For four days this debate went back and forth. Finally I said, “If I wake up tomorrow with high blood sugar levels, you are putting me on multiple injections or I am going to the media!”
Hashem helped and my blood sugar levels were high the next day. The doctors called a meeting of the entire staff and agreed to put me on multiple injections.
I had won my request, but I had a long road of trial and error experimentation before me. I needed a medical guide and a coach to help me move away from the standard approach to a totally individualized program of insulin injections and carbohydrate control.
Finally after an extensive search, I found Dr. Richard Bernstein, who wrote The Diabetes Solution.
He has a system that is totally low carb. His theory is “little insulin, little mistakes, big insulin, big mistakes.” He himself is a remarkable human being. He reversed many serious complications from Type 1 diabetes and as a result of his personal triumph, decided in middle age to go to medical school in order to help others. I didn’t know at the time that I was doing my own experimentation, but I was actually discovering the basics of the system of diabetes control that he has pioneered. Choosing a target blood sugar that I felt comfortable with, insulin to blood sugar ratio to get down to target and insulin to carb ration to cover food.
Dr. Bernstein was the only doctor I could find who was teaching people how to function at this level. Viewed as a radical by the medical establishment, he is a real pioneer in diabetes management and prevention.
Now that I was stabilized, finishing school and having some support group meetings in my home, I very much wanted to have the blessing of another baby. The basic consensus was that I was nuts! For me this was the last piece of the puzzle. Again my search began for the best and I was lead to Dr. Lois Jovanovic, another healing angel in my life. The Director of Diabetes Research, and Chief Executive Officer of the Sansum Medical Research Foundation in Santa Barbara, California.
Dr. Jovanovic is a leader in the field of gestational diabetes and the scientific search for a cure. She taught me everything there was to know about diabetes in pregnancy and could not understand why I was not going for a full medical degree. Baruch Hashem, when my son was born, I was even more determined to help people with diabetes have healthy, normal lives. Together with Dr. Jovanic, I have guided hundreds of women with Type 1 diabetes to have happy healthy babies and to prove once again that people with Type 1 diabetes in good control have no limitations.
Studying under the guidance of these pioneers gave me the determination and the courage to start an organization to help the Jewish community- The JDA (Jewish Diabetes Association), which has a story and a life of its own.
The information in these articles is not meant to be used as medical advice. Any new programs or changes in existing programs should not be undertaken without consulting your physician or health professional.
To be continued!