Today kicked off Diabetes Blog Week 2013. The topic is called Share & Don’t Share. We are blogging about what we wish our Endocrinologist could see and what we hope they don’t see.
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?
You can read more blogs about this topic here.
I believe we are lucky to have found such a wonderful CDE (Certified Diabetes Educator) and Endocrinologist. When we first started down this road, we began with a CDE & Endo from Children’s Hospital. They were great in the hospital at diagnosis, but the traveling into Minneapolis and having to pay for parking was just the beginning of the reasons why we found someone else. A huge reason was that I felt my daughter was just another number, just another child with type 1 diabetes.
This is what I would love the first set of docs to know:
1. My daughter isn’t a number, she is child. She is unique. She is an individual. You cannot treat her as just a number. If you get to know who she is, then you will understand this.
2. Her A1c. It is an idea of what her blood sugar was like over the past few months, and asking me why it has gone up is a shot in the dark. It could have been that infection she had, the one that made her blood sugar stay high no matter what I did! It could have been so many things, that we had no control over.
3. Those blood sugars. “What happened on this day?” Your guess is as good as mine! Maybe it was the caffeine in that pop she had, maybe it was an incorrect bolus, maybe it is a high following that reading of 27, maybe it was something completely random! That blood sugar is just a snapshot in her life.
4. Talk to me, not at me. Look me in the eyes, and tell me what you’re thinking and why you’re thinking it. Work with me and help me understand this new life, this new road I’m starting on. If I had wanted a lecture, I would have gone to a college health class instead of to you.
5. Classes? REALLY?!?! Do you think I have THAT much time to drive 1.5 hours each way for a 2 hour class, once a week for 6 weeks in order to get an insulin pump for my daughter? I DON’T THINK SO!
What I didn’t want to share and hope you never knew:
1. We changed endo’s not because of the mileage, like I said, but because I wanted someone better for my daughter. Someone who listened and really understood my concerns.
What I’d like our current team to know:
1. The sleepless nights. There are so many of them, especially the few days following our appointment. Those slight changes in basal rates, they don’t seem like much but WOW do they affect her blood sugar! It drives me crazy!
2. Research, research, research! We do so much research on the research that is going on for type 1 diabetes, so that when you ask if I have any questions I can ask what you think about the current research that is going on. Bet you didn’t know that!
3. Her blood sugars and consequently her A1c. I swear the entire week before our scheduled appointment, her blood sugars go into hyper-drive! They skyrocket, for absolutely no reason. At least that I’m aware of, unless it is just to make it seem like I’m not doing my best to bring her A1c down. I stress and get so anxious about this number. It’s like a test that I can’t study for, that I can’t do anything about, and I feel like everything we’ve done is under scrutiny. I’m thankful you don’t ask “what happened here?” for those blood sugars that aren’t in range.
4. I’m so thankful that you listen. You listen to what I have to say. You listen to my daughter. You talk with us, not at us. Our appointments NEVER EVER feel like a lecture. Even when her A1c has gone up a bit, you talk with us about what has happened over the past few months. You never criticize, you always tell us how great we are doing. When I have a problem with an allergic reaction to an adhesive, or problems with something not working correctly I know you are there. An email at 11 pm from me is responded to sometimes within 30 mins. This is above and beyond anything I ever expected from my daughter’s diabetes care team. This is what makes you a step above the rest.
What I hope you don’t see and don’t know:
1. That I’m a bit overprotective and don’t always do the changes you’ve made in one big go. I might change just the morning basal rate for a few days, to see what happens. Then I might change something else. But I don’t like a lot of changes at one time. They scare me.
2. The circles. The black circles that are under my eyes due to lack of sleep. Due to those 2 am alarms to check on my daughter. Due to those mom intuitions that wake me up scared and feeling like I must check on her, that something is wrong. They happen way more than I like to admit to anyone.
I’m glad we have you as our crew of trusted diabetes care specialists! You are both wonderful, and you make this disease livable and manageable. So thank you, thank you for being with us for this wild ride! Our visits are NEVER just 15 minutes, our visits are an hour long. The visits are personal, you always ask:
- Do I, as the parent, have any concerns or questions?
- How she is doing? Not just with her diabetes, but with everything!
- Are there any changes I think we should try?
- Are there certain times I’ve noticed any trends in highs or lows?
- Is there anything that we can do to help you?
These questions make me feel that we made the right choice, that you are the right team for us in this journey!