My husband Steve and I just returned from a car trip to Maryland and West Virginia to visit relatives. On the way home I had decided I wanted to meet Sue from Pennsylvania, my fellow frequent guest blogger on Laddie’s Test Guess and Go blog. Sue and I had initially met on the ADA Type 1 board a year and a half ago, and since then we have talked on the phone twice weekly and become good friends. I live in a town called Farmington in the Finger Lakes region of western New York, and Sue lives in Harrisburg, the capital of Pennsylvania. While we were there Sue and her husband Marc took Steve and me to Hershey, where we took the Great American Chocolate Tour. A wonderful outing for diabetics, don’t you think? LOL
Sue and I came up with the idea of interviewing each other’s spouses while we were there, so we could each get the perspective of a fellow diabetic and supportive spouse. The following is a discussion between me and Marc, two Type 1 diabetics. As you will note, we have similar stories.
Sue: Marc, how did it come about that you were diagnosed as a diabetic?
Marc: I was diagnosed at age 49. I started losing weight very slowly but continuously. One day I realized my pants size dropped from a 38” waist to a 34” waist. Then a 32” fit well. As this was happening, friends were taking notice that I had lost a lot of weight. These same friends were asking me if I felt okay. My answer was that I felt fine. What really got my attention was a trip from Harrisburg to Atlanta. One day in the middle of our stay in Atlanta, I noticed that I was going to the bathroom approximately 4 or 5 times each hour. On the trip home (872 miles), I had to pull over at every single rest stop to go to the bathroom. I thought that I might have a urinary tract infection. I went to my doctor, where he pulled some blood and informed me that I had Type 2 diabetes.
Marc: Sue, how were you diagnosed?
Sue: In 1988 I lost several pounds over the summer with no effort. I also made frequent bathroom trips and was very thirsty, but I attributed it to the hot summer weather, and besides I was thrilled with my new dress size. In the fall I went for a pre-op blood test at the hospital. My doctor’s office called me the next day and told me that my blood sugar was 480. I replied that I knew what that meant, because my 17 year old son had been diagnosed as Type 1 at the age of 4. When I went to the doctor’s office, I was told that I was a Type 2 diabetic. I accepted this diagnosis because my mother was a Type 2 diabetic. My doctor gradually put me on various Type 2 diabetes pills and increased the dosages in an effort to improve my blood sugar, but it was never where it should have been. Eventually insulin was added to the mix, and I quickly regained the weight that I had lost. In 2000 my PCP referred me to an endocrinologist at the Joslin Center in Syracuse, NY. There I was told that like my son, I was a Type 1 diabetic.
Sue: How were you initially treated for your diabetes?
Marc: Initially I went to my family doctor and he put me on Metformin and instructed me to test my blood at least once a day. For the first year to year and a half, the Metformin seemed to work. I slowly gained back weight but at the same time, my diabetic numbers were escalating upwards. That is when the doctor recommended that I see an endocrinologist. When meeting with the endocrinologist he said to me, “You’re not going to like this. You need to be put on insulin as of today. Your family doctor did not do you any favors.”
Marc: How has your life changed since being diagnosed as a Type 1 diabetic?
Sue: As I transitioned from being a caretaker of a Type 1 to a Type 1 myself, I became more conscious and sympathetic of what my son goes through every day in trying to manage his diabetes. I used to think that if he did the right thing, his diabetes would be well controlled. I came to realize that there are very many variables to diabetes that we don’t understand such as how dietary fat delays the blood sugar in rising, and stress, a simple cut or a common cold could affect the direction blood glucose numbers go.
Sue: How has your life changed?
Marc: Luckily my wife is more energetic about things that I do, things that I eat, the amount of carbs I eat, etc. then I am. I have to be more careful about what I eat. I am a person who likes pizza, ice cream, donuts, steak sandwiches, etc. Now because of diabetes, I have to think twice. My overall control of my A1C is not as good as I would like it to be (lack of CGM). When I had a functioning CGM my A1C was as low as a 6.9 and without it I’m up at 7.9. Of course my doctor wants me back at 7 or less.
Sue: Marc, please share why you don’t now have a functioning CGM.
Marc: I did have one. It was always covered by the insurance that was provided to me by my employer. When I turned 65 and entered Medicare, my existing CGM was in need of replacement. Medicare denied coverage and I am now at Level 4 in the appeals process, trying to get Medicare to cover this needed device.
Sue: How has your life changed without the use of your CGM?
Marc: I have been told by my present endocrinologist that I am a brittle diabetic and I have been suffering from hypoglycemia unawareness (the inability to detect when my blood sugar drops to a dangerous level making it possible for me to become disoriented, combative or in the most severe circumstance, blacking out). Basically, it affects every facet of my life.
Marc: Sue, I find it interesting that you are using an OmniPod pump. I use a Deltec Cozmo which I realize is an older pump. How would you rate your OmniPod?
Sue: Excellent question Marc. The OmniPod is my first and only pump since December, 2007. Like many people, I did not like the idea of having a device attached to me. I finally came to realize after reading discussions on the ADA Type 1 board that the pump was the way to go. I chose the OmniPod over the tubed pumps because I thought it would be more user friendly. I love it and have never looked back. My son has been on the MiniMed pump since January, 2008 and he loves his pump. Different strokes for different folks.
Thanks to Marc for joining the conversation at Test Guess and Go. Please join us tomorrow when Sue from Pennsylvania and my husband Steve have an honest and insightful conversation in which they compare their experiences as the spouse of someone with Type 1 diabetes. I hope you will read it.
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