JDRF invites the Bay Area diabetes community to a free educational event: Taking “Control” Out of Diabetes, an evening with Jessica Bernstein, Psy.D. Psychologist specializing in type 1 diabetes/chronic illness;  “Blood & Honey” documentary film director and producer and living with type 1 diabetes for 38 Years.

• WHEN: Wednesday, April 21, 2010; 7:00 to 9:00 p.m.

• WHERE: Calvary Presbyterian Church, 1940 Virginia Street, Berkeley, CA 94702

• RSVP: ceisen@jdrf.org or (415) 597-6317

*Please note – childcare will not be available for this event.

In a controversial talk, Psychologist Jessica Bernstein sparks debate about our current method of approaching diabetes care with the goal of controlling the condition. Dr. Bernstein, who has had type 1 diabetes since age one, will discuss two key questions:

• Is it possible to control diabetes?

• Is it healthy to approach diabetes care with the mindset of trying to control the condition?

Through excerpts from her documentary film (now in production) entitled “Blood & Honey”Dr. Bernstein will present varying views about the “myth of control.”  This talk will provide you with new ideas for approaching diabetes care that could improve the psychological experience of diabetes for anyone diagnosed with type 1 or 2 diabetes, adult or child.

Visit the website at www.bloodandhoney.org.

Dr. Bernstein has a private practice in Oakland focused on people with diabetes.

For additional information, read this  Los Angeles Times article on Dr. Bernstein’s presentation “Diabetes May Create a Chasm Between Patient/Doctor.”

To find out about JDRF funded research, local services and networking, special events or the Walk to Cure Diabetes please visit: www.curetype1.org

This is the third entry in a series of four posts by Shelly Jensen.

Carbs, Carbs,Carbs (or not). Let’s get this out the way: when we are pregnant, we often crave food or can’t stand the sight of it. If you are like me, you crave carbohydrates. Even when I was going through morning sickness, the only thing that would help me feel better was carbs! I am talking about serious carbs – macaroni and cheese, banana muffins, bagels. This is normal pregnancy stuff but can make you feel terribly guilty if you succumb to it. The important thing to remember is to plan for these episodes. Also, talk to your doctor or nurse about it. Tell him or her, “Look, I am craving carbs, I’m hormonal and I cannot help myself!” The important thing is to be honest with your team. Do not hold back and do not feel ashamed.

Like every other pregnant woman, you have strange new cravings as well as strange aversions. If you have morning sickness you might have a hard time eating. This also needs to be discussed with your team. They will work out a plan for you so that you can prepare for these cravings as well as times that you just can’t eat (unfortunately, that never happened to me). Insulin dosages can be adjusted very precisely throughout the day to accommodate these moments.

The same goes for an exercise program. If you are a pregnant woman who would like to continue your exercise regime throughout your pregnancy you need to discuss a plan with your team. As you already know, exercise affects your blood sugar and when you add pregnancy to that equation, you need to pay even closer attention. If you are not already in the habit, please keep glucose tablets in your pocket during exercise. Your temporary basal settings on your pump will come in very handy for planned exercise. As your doctor tweaks your insulin settings very precisely and meticulously, you will start to realize what an important tool it will be throughout your entire pregnancy.

First Trimester Dips. I had morning sickness during each of my pregnancies in the first trimester. Actually, it was more like all-day sickness for me. Although I was eating muffins and macaroni and cheese, I noticed a drop in my insulin needs. This is very common in the first trimester and is due to your new fetus confiscating the glucose from your body. If you are one to despise the thought of food during the first trimester you may notice an even lower dip in your insulin requirements.

As you may know from previous experiences, sudden and extreme hypoglycemia can be very frightening. When you are under tighter control, you are more prone to these episodes. During the first trimester of pregnancy, you may be even more susceptible to an occurrence. This happened to me a few times in each of my pregnancies. I am fortunate that I can feel it coming on right away and so was able to correct it quickly. However, one day I was visiting a friend out of town and I happened to be alone in her house on Sunday morning. Before I even knew what was happening I felt as though I was going to faint right there in her living room. My body started shaking and I was seeing black spots. I knew what it was but I had never felt it so badly. I could barely make it to the pantry where I ransacked a package of cookies. I did recover but it scared me to death. The only thought that went through my mind was “what if this happens when I am home alone with my newborn?” This is a very real concern and I vowed to keep glucose tablets in every room of the house, in my pockets and purse at all times. To this day, I stockpile glucose tablets. Next, I had to explain to my friend why her pantry looked like an animal had attacked it.

I have always been a bit embarrassed about my diabetes and some of the side effects. However, the episode at my friend’s house made me realize that I now had another human being to consider. Of course my husband and family were very well informed of these types of side effects but I could no longer let my awkwardness prevent me from letting my friends, neighbors and coworkers know about my condition and what to do if I had symptoms of low blood sugar.

I wound up announcing my pregnancy earlier than most women do. When I took this step it felt very empowering and it also felt like an act of love for my baby. Just be warned – many of your well-meaning friends will nod with empathy as they tell you about their uncle who was just diagnosed with diabetes and their cousin who had borderline diabetes while she was pregnant. Most of the general public does not understand the differences between the various types of diabetes. So, I suggest you just nod back with a smile and if the moment permits, clarify your condition. They will then realize that the “pager” you have been wearing is actually an insulin pump.

Second Trimester Bliss. I truly enjoyed the second trimester of both of my pregnancies. As is common, my blood sugar levels and insulin requirements evened out and I felt great. Morning sickness was over and I was craving healthy foods and taking walks. My readings were near perfect. My “bump” was showing but I was not uncomfortable (yet). I started telling the whole world that I was pregnant. These glory days inspired me to pay even closer attention to my food intake and patterns throughout the day.

Lots of tests were conducted in this trimester. Due to my “advanced maternal age”, not because of my diabetes, we decided to have an amniocentesis to detect disorders and defects such as Down’s Syndrome. We were thrilled that the results came back with no red flags. Next, my doctor ordered a level 2 ultra sound to be sure the baby was developing properly (translation: no deformities in the lungs or heart and other organs). My husband and I were much more apprehensive about this test than the amniocentesis.  Everything was measured as precisely as possible. So, when the specialist who read the measurements brought us into his office we were a bit nervous. I will never forget the words he used: “your baby is developing normally, thank God.” The words “thank God” really hit me with how “high risk” this pregnancy really was. My husband and I celebrated that evening by calling our family members to let them know the news.

Third Trimester Panic. The only good thing about my third trimester was that I did not have to take the glucose tolerance test for gestational diabetes! I had a terrible time keeping up with how rapidly my insulin needs were increasing. During both pregnancies, there were some scary and unexplained high readings. My wonderful nurse was always there for me. I called her crying on more than one occasion. I was so worried for my unborn child. By my 38^th week my total daily insulin dosage had doubled from pre-pregnancy.  My belly was so big that I could not see my infusion sites and I wound up with some sores that I never knew were there until my doctor saw them. So, I had to get experimental with my sites so that I could see them. The only good thing was that my breasts became so large that I was able to conceal my pump in my bra very easily, something I continued to do after giving birth.

Towards the end of the third trimester of my first pregnancy, I developed edema (severe swelling in my ankles). This is a higher risk when pregnant with Type 1 Diabetes. I am not exaggerating when I say that my ankles looked like those of an elephant. I frequently looked at them saying out loud, “these are not my legs!”

The edema quickly developed into a case of preeclampsia (high blood pressure and protein in my urine). This is also a higher risk when pregnant with Type 1 Diabetes and the only cure is giving birth. While edema is uncomfortable, preeclampsia is very dangerous to the mother as well as the fetus. Incidentally, I did not develop either of these conditions in my second pregnancy. When preeclampsia was discovered at a routine visit with my Obstetrician on a Friday afternoon, I was swiftly sent home on bed rest with medical jugs that I was to fill with my urine. Picture my devoted husband carrying these samples to my doctor’s office on his way to work! I just kept saying, “For better or worse!” Well, the bed rest did not last long because I simply could not remain in bed. When I visited my doctor again with no signs of improvement, I was sent to the maternity triage. I was then admitted to the hospital and waited for five days until I had an emergency cesarean section. To be continued.

Post Script

Share your stories with me. As I continue to say, every pregnancy and every person with diabetes is different. These were my experiences but you will have your own unique experiences. Please write to me and let me know your own story. I would love to hear from you. Also, if you have Type 1 Diabetes and are hoping to become a mother, please contact me. My goal is to reach out other expectant mothers with Type 1 Diabetes. My wish is that the next woman who feels as frightened and alone as I did may be comforted by our stories.

This is the third entry in a series of four posts by Shelly Jensen.

Heading into the second trimester of my first pregnancy, a friend asked me how I was feeling. She asked me this every time we talked but this time she said “I remember when I was pregnant that I felt sort of alone, like no one could possibly understand what my body was going through.“ I knew exactly what she meant and on more than one level. I have always felt that way about living with Type 1 Diabetes – alone, like no one else in the world could possibly understand the physical and emotional anguishes that often accompany this disease. Couple that with some of the hardships of pregnancy and I found myself in a very lonely, private place. I was not worried about how the disease would affect me while I was pregnant – your body already goes through so much while pregnant, what was one more thing? I was worried about my unborn child.

This is not to say that I did not have tremendous loving support in my life at the time. My husband, Aaron, my friends and family were there to listen, learn about my plight and offer whatever caring words they could muster up. Aaron spent many more hours on the internet searching out information than I did. More than once, he came into our bedroom late at night with great concern having found some extreme cases that often pop up in cyberspace. My team of specialists – my “high risk” obstetrician, endocrinologist, diabetic nurse – was as supportive and knowledgeable as one could wish for. Actually, I was thrilled to be pregnant and already in love with my unborn child.

As many first-time expectant mothers do, I read all of the popular books on pregnancy, some more light hearted, some more technical. As the famed author C.S. Lewis once said, “We read to know we are not alone.” So, after reading my books on pregnancy, I searched the internet for any kind of support forums or information dedicated to pregnancy and Type 1 Diabetes. I found plenty of information focused on Gestational Diabetes. However, this is a very different condition – one that I would have gladly undertaken in place of what I was facing. I needed to read accounts of pregnant women with Type 1 Diabetes, or better yet, success stories of healthy babies born to these moms. I became frustrated at books and websites that wrap all types of diabetes into one. Although the symptoms are similar, the conditions and living experiences of the different types are very dissimilar. And, material about Type 1 Diabetes, or Juvenile Diabetes, seemed to focus too much on the “juvenile” aspect of the disease. I found myself saying directly to the computer screen “hey, we juveniles grow up and some of want to become mothers!” If I found any information, it was a link to warnings about getting pregnant with Type 1 Diabetes, including possible developmental defects of the fetus.

Was I really the only woman going through this? Or, was I the only one feeling scared and alone? Were all other expectant mothers with Type 1 Diabetes totally confident that their unborn children would be perfectly unharmed by the disease? Of course not. I could not be the only woman dealing with Type 1 Diabetes and petrified that my unborn child would be harmed because of my condition. I desperately yearned for some support and empathy. Living with Type 1 Diabetes and now pregnancy with an unborn life relying on my “good behavior” was a very scary responsibility.

My next step was to talk with my diabetic nurse, who I had gotten to know very well since I had been checking in with her with her once a week to chart my “numbers”. I asked her if she was working with other women like me and she said she had three other patients at various stages of pregnancy. I asked her if she thought they might be interested in forming a support group. She excitedly answered that she thought they would. But due to confidentiality laws, she would have to arrange it. I was so eager to meet these women! Well, everybody’s schedules were so busy and it was very difficult to arrange a meeting. And, as pregnancy goes, time and gestation waits for no one!

I was back to square one and by this time about 28 weeks pregnant. I knew I had to take matters into my own hands and at least document my own story so that maybe the next woman with Type 1 Diabetes who wants to become a mother or is already pregnant would not feel so alone. Here is what I have to say to you women: You are not alone, you can get through this and you can have a healthy baby.

I am not a doctor and am not going to attempt to give out medical advice. Every person with diabetes is different and every pregnancy is different. However, I can offer some encouragement and even some tips on how to get through it. Let’s face it, pregnancy is hard enough when you are a “normal” woman. Diabetes adds an extra layer of caution and attentiveness for nine months. If other people are blessed with a pancreas that operates on “autopilot” those of us with type 1 diabetes have to “manually steer” ours. When pregnant, the journey includes many hills, valleys and countless curves along the way. Yet, the challenges of pregnancy with Type 1 Diabetes are more than worth the prize at the end.  To be continued.

Post Script
Share your stories with me. As I continue to say, every pregnancy and every person with diabetes is different. These were my experiences but you will have your own unique experiences. Please write to me and let me know your own story. I would love to hear from you. Also, if you have Type 1 Diabetes and are hoping to become a mother, please contact me. My goal is to reach out other expectant mothers with Type 1 Diabetes. My wish is that the next woman who feels as frightened and alone as I did may be comforted by our stories.

This is the first entry in a series of four posts by Shelly Jensen.