Change the World – #dBlogWeek Day 1

May 12, 2014

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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.


a focus on good D things

May 12, 2011

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Believe it or don’t, but just  like Karen’s blog header says, life with diabetes isn’t all bad. Seriously. The D-Blog Week topic for the day involves focusing on good things diabetes has brought us. I don’t like to give D a whole ton of credit, but I do like to look at the brighter side. So let’s get into it, shall we?

Because of type 1 diabetes, I have:

– Met SO MANY truly amazing people, including: The girls from my Cottontail Cabin at Camp Diamont, Montana’s summer camp for kids with diabetes that I attended from 8 to 14 years old! My several friends from Camp Diamont who came back as junior and senior counselors with me: Y’all are such superstars and I’m glad to still know you and have you in my life (thank you Facebook and LinkedIn!). My dear friend E, my first friend with type 2 diabetes who was a real love and whom I miss so much.

– Joined my life with a partner who loves me for who I am–D included. She knows all that my life is, and accepts me with it. There’s no hiding it, even though I didn’t take very good care of myself the first 15 years we were together.

– Become an assertive advocate for myself, family members, friends, random strangers with regard to medical care providers. (Insurance companies are another matter–getting something in the mail from insurance gives me a panic attack before I even open it.) BUT with medical care, I’m your go-to person. I can stay calm, ask questions based on research, say things like “What does the most current literature say about that?” “What kind of results can be expected?” and “How can I make _____work in my life?” And if I’m not satisfied with the answers I hear, I feel empowered to break up with the Dr. Crappys and find another provider. It might not be easy, but I’ll find one who will treat me with current, peer-reviewed knowledge and expertise and respect about successfully managing type 1 diabetes.

– Learned how to take care of myself, and to problem-solve for whatever crisis comes my way. Being prepared is one thing, and dealing with whatever comes along is another. Cooked your one bottle of insulin in a car in 90 degree heat? Been there. Lost insurance coverage? Yep, done that too. Left the house without insulin pump, whether for hours or days? Word. BGs go high immediately after exercise at certain times of day, but go way low during exercise at other times? Still figuring that out, but I *will* prevail (if you’ve dealt with this issue too, please comment or email!) D has made me self-reliant, confident, knowledgeable, and creative.

– Found that I have a passion and talent for promoting public health in ways that don’t demand a lot from individuals: Policies and systems that help make healthy behaviors easy for communities and populations to choose. Because the environment and culture influences so many of my decisions regarding diabetes management, from food and exercise to medical and life insurance coverage and beyond, I understand. It would be a lot easier if our environments supported us in managing our diabetes, rather than demanding we be strong and independent and go against the grain to make the best choices for our health. It just shouldn’t be this hard, and I like to work to change that.

– Found the DOC (Diabetes Online Community), hundreds of folks with D, parents of children with D, and loved ones of kids and adults with D. Can I just say that finding the DOC was truly a lifesaver for me? That’s the truth. I don’t think I would ever have been able to start to change so many of my own behaviors without having the security blanket and the supportive push into the positive pool of the DOC. Everyone who blogs, or tweets, or is on Facebook, with D, is sharing their piece of the entire global d-mosaic with us, and making all of our lives better. Together. Some days I wish I could just read blogs and tweet all the time…but honestly, I’d rather meet everyone at, say, a d-prom IRL.

-Knowledge that I can do this, it is possible and I won’t be struck out of the game. Thirty years in, I’m still here. That’s a good thing.


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