Monday, January 22, 2018

Permission to Eat: A Visit with a CDE

I can be a curious person. Given a situation, I am most likely to do a bit of research and try to find a solution or explanation. That was me when I was diagnosed with type 2 diabetes over 12 years ago. I was never offered any education or the chance to see a nutritionist/dietician. I was told to buy a meter with the cheapest strips and lose some weight. Terrific. Over the years I’ve observed many people who are dealing with diabetes who just do what the doctor says and never think outside that box. I don’t blame them; that just isn’t who I am. I want to know why. I want to know how. I want to figure out things I can do that might improve my situation.

Through that desire to learn, I found the DOC. I connected with other people who have diabetes. I read blogs and magazines geared toward people like me. I learned what it’s like to live with diabetes. I also learned that there is a lot to living with this disease that the doctors don’t know or understand. I figured out that what I eat has a huge effect on what my meter shows me each day (who would have thought!) I learned and evolved into the patient I am today (and met some awesome people!).

That all sounds pretty cool and maybe a wee bit impressive, but I have discovered that this method of education can cause some problems. You see, as I came to realize that processed carbs were really tough on my blood sugars I began to demonize carbs. As the numbers on my meter began to rise I cut out more foods in order to attempt to control those numbers. I was always praised for my “control” because my A1c was pretty rock steady and was denied access to insulin even though I was unable to eat lots of different foods. My A1c is still pretty rock steady but now I find myself with ridiculous fasting numbers and my doctors wouldn’t listen to my concerns. You see, the thing that the doctors weren’t hearing was that I was struggling with the idea of not being able to eat “normally”. I developed a strange relationship with food.

Let me insert here my views on the low carb way of eating. I think it’s a phenomenal way to control blood glucose! We are told that we need carbs for energy etc., but it has been proven over and over again by people with diabetes that you can, in fact, do just fine without a lot of carbs. I have been eating a lowish carb diet but have not been able to maintain a strict reduction in carbs. (Remember, I have food issues.) I struggle with “denying” myself certain foods and that makes eating a LCHF diet difficult for me. It just isn’t sustainable…for me. It causes me anxiety now and then. Many people thrive on this diet and I am both impressed and jealous. Yay for them! However, I have found that due to a combination of my age, anxiety etc. I need some comfort food from time to time. My problem was that comfort food often wrecked my blood sugar. Enter anxiety and self-blame.

My new physician wanted me to meet with a CDE. Just like with the dietician last fall, I had never met with an educator. We agreed to a one-on-one session to begin. I really liked her. As expected, she also encouraged me to eat more carbs. She wants me to attempt 30 carbs per meal. I am determined to listen to the professionals and am experimenting with adding certain foods. I have already figured out that I can eat certain breads so egg sandwiches have returned to my life on occasion. Score! This morning I tried some oatmeal and will know if that was successful in about an hour. (I’m not holding my breath.) Without mealtime insulin I can’t go hog-wild. Heck, even if I did have mealtime insulin I doubt I would ever get to the point where I would eat whatever I wanted and just cover it with an injection. There was one thing that the CDE said that really hit me: “If you can’t eat a sandwich, then something is wrong and you need more medication.” Wow. Another professional telling me that maybe I don’t need to be so hard on myself. Maybe, just maybe, there is a way to have my sourdough bread and eat it too.

I am trying very hard to stop demonizing food. The visit with the CDE has given me permission to eat again without feeling guilty or stressed or somehow less-than. If my attempt to eat oatmeal this morning gives me higher numbers, then I have a choice: don’t eat that again or let the numbers show that I need additional medication. My friend Laddie and I used to joke that maybe what I needed to do was wreck my blood sugars so the doctors would consider insulin. Here I am sorta doing that only in a controlled way with the blessings of people who are supposed to know. I am not trying to prove that carbs ruin everything, but instead I’m trying to find whole food carbs that I can eat without issues. I intend to continue to eat the low carb foods that I’ve added to my arsenal like my low carb pizza crust made with eggs and cheese which is awesome! I’m hoping to add other “regular” foods like some bread now and then and maybe a wee bit of potato. Kate just wants to feel more normal and stop feeling bad when she eats certain foods.

Food isn’t the problem, diabetes is. Doing everything one can to live with a chronic illness is commendable. I can’t beat myself up because my way of dealing with diabetes led my doctors to think that everything was alright when it very much wasn’t. Something needs to change in the way people with diabetes are treated. Physicians need to do a better job of listening to their patients. They don’t just need to listen, they need to hear them. Mental health in regards to a life with diabetes is just as important as the damn numbers we are forced to pay attention to.

I am evolving, yet again, as a person with diabetes. My recent revelations regarding me and food has been very uncomfortable. I am even feeling some guilt for past blog posts because I feel as if I was being too narrow-minded. I’ll work on that guilt because this blog is about my journey with diabetes; what I’ve learned and how I live with it. I can’t beat myself up for how I was then any more than I can change who I was as a teenager. I can learn and move forward and maybe my words here will ring true for someone else. The Kate who shunned processed carbs was not on the wrong track. On the contrary, she was spot on! It’s the fault of the “system”, not the patient. Here’s to my continued journey!


PS: I’m up to 14 units of Lantus. The results leave me hopeful but I have a way to go yet. More on that in another post.

4 comments:

  1. Kate, I'm very happy that you've got a CDE who listens to you and wants to work together in a healthcare partnership. That makes a very positive world of difference.I've found my decades of life with diabetes to be an amazing, and many times frustrating, science fair experiment. Continue to be willing to try "new" foods and find different ways of preparing a food. That's really the only way you'll learn what works for you,'cause each one of us is unique. Along your journey...remember to enjoy life!

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  2. I eat normal human diet and follow the ADA diet for over 40 years with perfect health.

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  3. Kate, I use fast acting insulin so my situation is different. But, I will not give up carbs. For me it is too difficult and second I would miss some of them. I rarely eat bread, I seldom binge on carbs, but I have a small bag of microwave kettle corn popcorn each night (I love popcorn 24g). For me part of life is enjoying some things I love. Is it ideal for a person with diabetes? I do not think so. Is it important for my mental health? Oh yeah.

    If someone feels strongly about not eating carbs, I say that is great. It is just not me. I seldom indulge in lots of anything, including a low carb diet.

    I trust you will find your happy spot. Bravo for consulting a CDE.

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  4. Kate!!
    I am just reading this post as I lay in bed thinking about my day to come tomorrow. I am a CDE and I could just hug yours for giving you the support to start “living” again in regards to food. I agree with much of what you’ve said regarding physicians. They often focus on the A1c which is only a small piece of the diabetes puzzle. What you’ve done with food over the years is not uncommon. We hear that from people that visit our clinic all the time. Your message is a good one and I’m so glad you had such a positive experience with Your CDE. I’m glad you added the part about considering purposely sabotaging your blood sugars to get the help you needed. It’s a good reminder for all of us in the medical field to pay attention and HELP people when they need it. So they never have to get to that point of frustration and despair.

    I would ask your CDE about your medication options. You mentioned mealtime insulin as a potential next step but you may have better options than that depending on what other medications you may be taking now and your other medical health conditions. The next best step we usually try is a GLP-1 agonist (like Victoza, Trulicity, Bydureon) because it works like mealtime insulin to bring blood sugars down after the meals (esp Victoza) and it’s one shot a day or a week vs 3 shots a day. There are also a couple of combination medications on the market that have GLP-1 mediation with long-acting insulin together so you only have to take one shot a day. If you do end up taking insulin with your meals, depending on your doses there are things like VGO that can help reduce the number of shots you take as well.

    Thanks again for your honesty and your story. It’s stories like these that help me be more aware of the emotional toll diabetes takes on the people I work with each day.

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