Before I say anything… if you read only one blog post today read this one on Mashable: Diabetes Is Already Psychologically Demanding, So Cut the Stigma Too. I’m proud to have been a part of it. Hopefully you’ll come back and read this post too.
Everyone’s diabetes is different and they way that they manage it has to be different. The following should not be taken as medical advice, and you should talk to your healthcare team about making changes to your diabetes care.
I’ve had type 1 diabetes for 3 years now, and for the past 2 1/2 years I’ve been able to keep my A1C under 6.5%. It hasn’t been easy, but the hard work has been totally worth it.
For reference purposes, at diagnosis in the middle of August of 2011 my A1C was 11.9%, by the end of September of 2011 it was down to 8.3%. My A1C hit it’s lowest of 5.9% in February of 2012, but it wasn’t the best 5.9% it could be. From August 2012 until now, I’ve been able to keep it steady between 6.1 and 6.3%. I keep saying “I” because the ins and outs of daily management are my responsibility, but a whole team of doctors and other healthcare professionals have been there for me and helped the process.
Here’s how I did it, and keep doing it (*spoiler alert* most of it has to do with attitude):
I got serious. And I did it right away.
The moment I was out of the woods after diagnosis, I started researching to understand the best that I could, what I needed to do. I followed all of my discharge instructions for taking insulin and how many carbs to eat per meal. Then I started looking at other options including insulin pumps and new doctors.
I ask for what I want and/or need.
At first I felt like I was eating too much food when I followed the 45-60 grams per meal guidelines I was given, so I talked to my doctor and we figured it out together (can I just say that I hate slide scales for insulin? I’ll take carb counting any day!). I wanted to start using an insulin pump, so I signed up for Intro to Insulin Pumps at my clinic and asked for a prescription for an OmniPod. I learned about CGMs and requested a Dexcom trial. I was having issues with insulin action time being far too slow at lunch, so I talked to my doctor about my struggles with prebolusing 45 minutes before eating and STILL going high within an hour or lunch, and she switched me to Apidra.
I ask to see labels and inquire in advance about menus. I asked about ingredients and food prep styles, sweet potato fries for example, sometimes they’re prepared in a traditional style that I like, other times they’re loaded up with powered sugar or a brown sugar glaze.
Asking about food is mostly due to diabetes, but partly due to food allergies. This is a good thing to do, because someone made a “special salad” with a “secret ingredient” that they wanted us to try. The way it was introduced made me wary so I asked, and when met with the answer, “I’ll tell you after you try it. You won’t believe what makes it so good.” I point-blank asked, “Does it have fish in it.” Guess what? It did! I didn’t eat it.
I got an insulin pump.
As I mentioned above, I got on an insulin pump shortly after diagnosis. (Started on OmniPod in December 2011.) I found the one that I felt would be right for me and got the ball rolling. I didn’t wait until my next appointment to ask my doctor, I called and talked to my CDE about it and got into the next class on pumps. Pumping insulin was the best decision I made for my diabetes care. My basal rates differ significantly throughout the days and it’s made me more flexible in general to handle what life throws at me.
I got a CGM.
Continuous monitoring with my Dexcom was another positive step in diabetes care for me. It helped me pinpoint when carbs are really going to hit me after I eat (ie for lunch, I spike at 1 hour, not 2), finger stick checks at the recommended intervals alone, won’t do that. I shows me when I’m rising and need to keep an eye on my bgs. It’s also saved me from severe middle of the night lows and hypoglycemia unawareness.
I eat low carb most of the time and read labels.
If a food has a label on it, I read it. I pay attention to the serving size and the carbohydrates, if I’m not comfortable with the carbs in it, I will pass. If the food doesn’t have a label, I look it up. Comparing the carbs in fresh produce isn’t entirely apples to apples… for example, I weigh my apples before I bolus for them. For most meals, I eat about 30-45 grams of carbs. Some are less than that and others are more, but keeping carb intake stable for meals has helped keep me stable overall.
Every meal has to have protein and if my blood sugar is high, I don’t eat more carbs, even covering them with insulin. I pick a protein or free food in those situations.
I stay hydrated.
Water is good for you… no matter who you are.
I check often.
I check my bg when I wake up in the morning. I check before I eat. I check to confirm a Dexcom reading. I check when I feel weird. I check before bed. I wake up in the middle of the night to check. I check before I drive. I check when I’ve been driving for awhile. I check when I haven’t checked in awhile.
My fingertips can show you how much I check.
I get aggressive.
I do everything in my power to bring down a high blood sugar, I don’t want to let them ride high for long, especially since it takes time to get it down. I also got aggressive with my targets. I adjusted my bg target in my PDM from the 100 they set me at down to 90 and I adjusted my “correct above” target from the standard 120 down to 110. Why? Because I want to live as much of my life as possible in the glucose ranges of someone without diabetes. These changes have helped me immensely.
I got over fears of going low.
Yes low blood sugar is scary and dangerous, but living in fear of being low kept me from living in a healthy glucose range. Because of my CGM mainly, I’m comfortable going to bed between 80-100 mg/dL, many are told not to go to bed under 120. I can’t achieve my goals if I stay 120 or higher all night, every night.
I’m also okay with staying between 70-90 for as long as possible. This is the range that people with functioning pancreases have, it is the range that I want to stay in.
I set my own goals and told my doctor what they are.
My doctor used to have the standard medical goals for me… and that wasn’t okay. So I set my target rates and my A1C goal and told her about them. She respected the ambition and helps me adjust for my individual goals… not the text book ones.
I decided not to hide and got over other people’s discomfort.
I do what I need to do, where I need to do it. I don’t shy away from wearing my insulin pump with a bathing suit , if my pump shows, my pump shows. If I need to check my blood sugar, I check my blood sugar. If I’m sitting in an airplane seat, I do it there. If I’m at a wedding reception, I do it there. If I’m driving… I do it at a stoplight, or have Brad help (he refuses to stick my finger, but will do everything else I need).
Diabetes has no One-Size-Fits-All management.
Diabetes management is not a scarf which will just wrap around everyone’s diabetes and land them in the “controlled” category. Type 1 management is different from type 2 management is different from gestational management, is different from medicine-induced diabetes management…. beyond that, my type 1 management is different from the management of every single other person with type 1. What works best for me does not work best for someone else.
My goals are different from your goals. My challenges are different from yours.
But we can do this.
I was inspired to write about this after reading Ginger’s article on Diabetes Daily, 5 Things that Helped Me Improve My A1C
The one time my minor OCD has come in handy was after my diagnosis. I went from a 16.6 A1C to 7.6 to 6.3 in six months, and have stayed in the lower 6’s since. That said, I have far too many lows and am just now learning to prebolus appropriately. But thanks for this post, it reinforces many of the things I’ve been trying to teach myself, and makes me feel a little less alone in this.
To summarize, I think we can say that you OWN IT! which is great. To get to where you are, and in such a short time after diagnosis, is remarkable.
I’m often a bit baffled when I hear of people going to an endo appointment and the doctor adjusts some of their rates. Yes, I’ve had recommendations to change certain rates or ratios at my appointments, but in many cases I change them on my own… maybe in confidence and maybe just to test it out for awhile. Glad to hear you don’t wait for someone else to “approve” your change.
As for the BG targets, I remember a time (before pumping and long before CGMing) when I shot for those aggressive targets, thinking a 75 was “good”. I had a ton of lows, and being that I lived alone, it was quite dangerous. Of course, now there’s faster insulin, better delivery methods, and better BG monitoring, but it still scares me to think of setting my targets to that level again. But, little by little, I’m making small changes to work towards it.