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Spend Time Listening

It’s been awhile since I posted anything significant about diabetes. I still have diabetes. It still creeps into every aspect of my life, it especially horns in on my sleeping as of late.

I started writing this post then the DSMA Blog Carnival topic for October was posted as: What can diabetes educators/HCP learn from the DOC? and I thought this kind of relates, continue reading for some reflections on my last endocrinologist appointment.

Most of the time I don’t have a problem with the fact that my endo sees only adults making me one of her few Type 1 patients or that I’m treated at a teaching hospital and spend most of my appointments with doctors in training*. But at my last appointment I did.

The doctor in training that I saw seriously lacked patient communication skills. She did all of the things that people with diabetes hate. She picked out a particularly high number on my log and asked what happened. I explained to her that I had an infusion site failure, I took the proper steps to fix it and pointed out where my number stabilized (in reasonably short order). She practically disregarded my explanation and fixated on that number and how to fix it for that time of day until I stopped her and said that I did everything right to fix it and that one number didn’t represent my general diabetes status during the afternoons. Then she said, three different times, “Your A1c went up.”

“Your A1c went up.” “Your A1c is up by .2.” Yes, yes I realize that my A1c increased by .2. It’s 6.1 from a 5.9, please move on. That’s only an average glucose increase from 123 to 128. And the goal on my chart is under 7% and my personal goal is under 6.5% so I think I’m doing ok. Clearly, my doctor in training had no idea what it’s like to live with diabetes. She asked about complications (I have none), she asked about any other issues that I was having and I explained my frustration with massive after lunch spikes, which she couldn’t find on my log to be a problem and said, “We’re okay with the 160s after you eat.” That’s when I said, “but I’m not.”

I see these doctors in training for chart updates and basic reviews of my logs since my last appointment, then I see my endo and they go quiet. Hopefully she learned something when Dr. O was unfazed by my A1c jump and was attentive to my after lunch frustration (that was when she switched me to Apidra).

The two positive things that this doctor in training did were to ask me about my pump since she wasn’t familiar with OmniPod and to talk about my kidney function improvement. She answered my questions about what I could do to continue reducing my nephrology risk (continue keeping my blood sugar in range and keep doing what I’m doing with my blood pressure).

This appointment was awhile ago, and I’ve been thinking about it off and on and been bothered by the communication/customer patient service aspect of it. I know that I’m not alone in feeling frustrated when healthcare professionals don’t acknowledge the day-to-day life that affects diabetes and that things happen beyond our control. The logs that they chose to look at were all of my test results from painting and moving into our new house, a situation that is not my regular and will throw my numbers into strange patterns. Situations that need prepared for and addressed, but not treated the same way as my typical routine.

How the DOC fits in Read the rest of this entry

Blog Action Day: The Power of We (in the DOC)

I participated in Blog Action Day last year and wrote about food (and diabetes). This year the theme is “The Power of We” so I think it’s high time I talk about the power of this online community that I’ve joined.

The DOC (which stands for Diabetes Online Community) in my opinion starts with Twitter (because that’s where I found them) and branches into blogs, Facebook pages and pretty much the entire internet. The DOC is a powerful, large (so large I don’t even know how many of us there are!) group of people living with all types of diabetes (there’s more than just two types and the DOC taught me that!).

When I’m asked about the value of social media, I find myself consistently coming back to the word “community.” In our online age, community isn’t physical anymore, it’s digital. When I was first diagnosed with diabetes, I felt alone. I didn’t really know anyone else who had type 1 diabetes and I was being given advice and told stories about people with type 2 diabetes. Although both types cause high blood sugar, they have different treatments, different needs and I felt like I needed to “meet” someone who had survived those first few months of carb counting, self-injecting and handling the new lifestyle that I was having to adjust to. I turned to Twitter and found a vast community of individuals with diabetes and caregivers who helped me find the resources, encouragement and outlet that I needed.

In the past year that I’ve been navigating life with a chronic condition, I’ve found that I turn to the DOC with questions and support. They’re always there. In the middle of the night when I’ve woken up with low blood sugar, a brief tweet finds me someone who is either awake in another time zone or up dealing with the same issues. I get digital high fives when something is going well. But most importantly, there are people that understand what I’m dealing with.

I am a part of this community and I’m not just sucking the support, encouragement and information out of it, I can turn around and give it right back to others who need it. It gives me great joy to congratulate a friend (they’re my friends now) on a stellar a1c or answer a question about my insulin pump for someone who is doing research.

Without the internet, I would be in dire need of a support group, but with the speed my life moves, I wouldn’t get what I needed from occasionally attending meetings with other Type 1 patients. My support group is online, all the time. The DOC has been a powerful source of support but also a force of people communicating to healthcare professionals and pharmaceutical companies what it’s like to live day in and day out with a chronic condition, and how they can improve their care with that information.

Online support and the powerful “we” is not limited to those with diabetes or chronic health conditions, there’s an online community out there for whatever you’re looking for. You are not alone.

Related Posts:

Blog Action Day: Planning Meals

You’re Allowed to Have a Bad Day