Change the World – #dBlogWeek Day 1

Today’s topic is Change the World.

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

This prompt is a pretty easy way for me to get back into the bloggy groove after almost exactly 1 year (gasp!). Yes, it’s been while. Hi, how have you been? I just went to the endo today. HbA1c was 6.9, thanks. I thought it was going to be a lot higher – go figure. I’m still not thrilled with what feels like a lot of highs, and I’ve been SWAGging my way through far too many carbs without even thinking about them (duh), but I did go for 2 little walks today. Progress. Oh, and I had surgery last month. Recovery’s been slow but just fine.

But let’s get moving on this #diabetesblogweek prompt!

3 major diabetes issues come to mind right away that I’d love to see change significantly: the ease with which anyone with diabetes can find trained, appropriate, compassionate, supportive medical care for their diabetes; the ease with which anyone with diabetes can access and use their own data, whether the data is from a lab, blood glucose meter, insulin pump, continuous glucose meter, or other piece of technology; and the ease with which anyone with diabetes can find and spend time with others who are in the same kind of boat.

I feel passionately that it should be easy to find a doctor or certified diabetes educator (CDE) who is well-versed in current research about recent technological and treatment options that may be appropriate for patients depending on the various contexts of their lives. It should be easy to find providers who are compassionate for and with us – not sympathetic, not pity or shame for us, but providers who will join WITH us and ask us “how can I support you in getting what you need for your diabetes?” This should be the gold standard, not the exception. In my experience, it feels like the exception – I’ve had several Dr. WonderfulEndos, for sure, but I’ve also had the Dr. Crappys as well – and unfortunately I’ve heard about them from others, too.

Just as much as I need medical providers who are well-trained about diabetes in both brain and heart, I also need access to my data – the numbers describing the vital diabetes and -related functions going on in my body – in a format and layout that is easy and useful for me to understand and make decisions. Without that, I can’t make choices that will be best for me. Any talk of making the “right” choice or the “best” choice, not mention the “healthy” choice, is incomplete without knowing my blood sugar, the direction it’s trending, how much insulin I have on board, how many carbs I ate in what time span…and so on…

Finally, I’m passionate about diabetes camp. I was diagnosed at age 7, attended camp from age 8-14, and went to diabetes teen retreat from age 15-17. I was lucky enough to go back and be a junior counselor, and then a counselor, at diabetes camp from when I was 18-22. For 14 summers, for about 1 week, I got to feel completely normal. There is no way to explain it to someone who doesn’t get it, but I will say it’s the biggest RELIEF ever. Like a giant boulder suddenly lifted off my shoulders and vanished for a week, that I didn’t realize was there the other 51 weeks out of the year until it was gone.

After grown-up responsibilities took over, and I moved around and couldn’t get back to my beloved diabetes camp but didn’t know where to find another, and years went by without it…I realized how much I missed the d-camp experience. I also realized how much I really needed a grown-up d-camp experience. I’d try to get it with support groups and meetups, which are wonderful, but not quite the same.

Then.

This.

Kind of like diabetes camp for grown-ups.

#BAMThereitis. You’re welcome.

Happy Diabetes Blog Week, everybody!

 

***Here’s the Change the World – Monday 5/12 Link List.