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.


cloud with a chance of type 1 #hawmc day 30

April 30, 2012

I love the word wordle!

Here’s the thing: I LOVE that the 2 biggest words in this cloud are “talking” and “diabetes,” or in my mind, “talking diabetes.” #BAMthereitis (and why is THAT not in the cloud? It totally should be! oh, it would be if I did a smartDpants twitterfeed cloud. okay, enough talking to myself.)

I’m going to do more of these in the days to come, but this one is perfect for today. Love.

wego health writer’s month challenge, Day 30: Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/


d-challenges & victories #hawmc day 27

April 27, 2012

I don’t know where today went. that’s not right. yes, I do. but I’m here, under the wire again, and going to do this while it’s still Day 27. booya!!

5 smartDpants challenges:

1. Remembering to take care of my diabetes.

That sounds stupid, diabetes is here all the time, there’s always something to pay attention to, how could anyone forget to do what needs to be done? All I know is that it happens, like when my pump yells at me that there’s only 30 units of insulin left in the reservoir and we’re 5 minutes behind schedule to get everyone out the door to kindergarten and work and the other work, and the oldest dog needs his Rx and both dogs need water and someone needs to pull the laptop cord out of the wall and omg, where did the homework go and are we TEN minutes late now? I’ll refill it when I get to work in an hour or so…except sometimes, I forget.

2. Paying attention to what the numbers say, and how they’re trending.

It’s gotten pretty easy to look at a Dexcom reading of 80 with a horizontal arrow and think all is well. Except my BG’s habit these days is to decrease really suuuuuuuuuuuper slowly. So I don’t get any fancy down arrows screaming at me to test and treat IMMEDIATELY. I get these lazy, sauntering downward CGM’s…from 80 horizontal…to 75 horizontal 15 minutes later…to 70 horizontal 20 minutes later…and so on…I get lulled into thinking all is well. With my “hypoglycemic unawareness” business that leaves me symptomless with a 35 mg/dl, it sometimes isn’t so well. I need to pay better attention to what’s going on.

3. Entering all the numbers.

BGs, 10-15/day. Basal rates, currently 5 a day that can change every few days. Boluses given, any time I eat (at least 3 times/day usually) or correct a high BG (some days 1, other days 3-4). Carbs eaten, either SWAG’d or actually counted. I do so much better when I enter ALL the numbers in my log/spreadsheet, every day, and sometimes I get that done. Some nights, my partner has to listen to me ask her “what did we eat for dinner on Monday that was 30 carbs?” when it’s Thursday. (She’s super awesome at remembering. Love you, A!)

4. Choosing the healthier/less fun/more difficult choice.

I make a big deal out of saying I can eat whatever I want, whenever I want, and I’ve lived with D forever and it can just go screw itself because damn it, I will have a cupcake and so there. It is what it is. I can, and I’ll do what I need to do so I keep my BGs in a decent range. But the thing is, my BG is such a freaking flatline when I eat fewer carbs. So it would be better, and feel good, for me to eat salad at most meals. I like salad, a lot, don’t get me wrong. And I do it eat it, a lot. Without bread. But constantly making the choice wears me down.

5. Loving myself just the way I am.

Sometimes I’m just so pissed at my body for failing the way it has, and my dumb pancreas for making my life this way. I can go through and do the gratitude thing or the “this is how it’s made my life so great” thing or the “I wouldn’t have had these experiences without this massive problem” thing, sure. I can. I wish I didn’t have to, though. I wish I could love this body with its brokenness and failed endocrine and autoimmune mess that makes parts of my life a huge pain the ass. Meh.

5 small smartDpants victories:

1. I have rocked an HbA1c of 6.0, 5.8 or 5.9 since November 2010. I never thought I could ever do that. I’m in a little groove.

2. Hundys. I get a BG reading of 100 mg/dl every so often. They’re fun. 😉

hello, hundy!

3. Flatlines, of the CGM kind, also known as d-planking. Those are also fun.

plank!

4. No-hitters, also of the CGM kind.

5. 31 years and 11 months of type 1 diabetes with no complications. #BAMthereitis!!

wego Health Activist Writer’s Month Challenge, Day 27: 5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.


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