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Sort-Of Guest Post: What Do You Wish Health Care Professionals Knew?

[Hey guys.  This post was not written by me, but was instead written on my behalf. It’s more streamlined and professional, and I didn’t want to toss it out there without some kind of explanation or positioning.  Take a look, read through, and please do participate if you’re inclined.  Also, please share this post if you’d like to help highlight this effort.  It’s a very cool study aiming to take a look at how HCPs can learn from communities like the DOC, and I’m looking forward to seeing the results.)  

A researcher in a medical school in Quebec City, Canada (who is type 1 herself) is doing a study about how health care professionals might learn from online communities of people living with conditions like diabetes.

I have been collaborating with her on this study since November 2012. Other people in the DOC are involved, too. I encourage you to participate in the study and to spread the invitation to be a part of this.

This study is open to anyone who has personal experience with diabetes. You may have type 1, type 2, LADA, gestational diabetes, or another type. You might have diabetes yourself or you might be a family member or friend of someone with diabetes.

Tell us what you wish that health care professionals (doctors, nurses, dietitians, physiotherapists, counselors, you name it) understood better about diabetes.

If you want to participate, sometime in the next two weeks, put up a blog post or post a video, and then post a link to it here: click this link for the study.  Tell us what you wish health care professionals knew!

After the two weeks are over, we will ask you to vote to help us prioritize which ones we should show to health care professionals first.

If you have questions about the study, contact Dr. Holly Witteman, PhD, the lead researcher on the study, or Dr. Selma Chipenda-Dansokho, PhD, the research professional running the study.

More Willpower Than Carbs.

It’s been a week of strange and unusually clingy lows, and they are often to blame for a rough day of blood sugars, as it’s so easy for me to over-treat a low, causing me to bounce  up too high, which makes me aggressively correct with a bolus (rage bolus!), which sometimes makes me low again.  Vicious cycle involving too much insulin and way too much candy corn (hypothetically speaking, of course – it was on sale!!).  Today, I’m looking back at some words of wisdom from my endocrinologist about over-treating nasty lows.

*   *   *

“It takes more willpower than carbs to properly correct a low blood sugar.”

This goes through my head every time my blood sugar is below 65 mg/dL.  I talked about lows with my endocrinologist a few weeks ago, and how when I’m excessively low (the ones that tangle my tongue in my mouth and leave cotton balls in the place where my brain should be), it’s very hard to measure out fifteen grams of carbs, then eat, and then sit patiently and wait for my blood sugar to rise.

“Usually, I measure out fifteen hundred grams of carbs, usually in the form of an entire bottle of grape juice, and then consume the whole lot in a matter of seconds.  Then I end up haphazardly bolusing to cover the extra carbs.  Usually, I end up much higher than I was aiming for, mostly because I’m in a freaking panic and treating the low as fast and desperately as I can.”

She and I talked about how panicky lows often lead to over-treating, which leads to highs, which leads to rage bolusing, which leads back to panicky lows.

“Fun vicious cycle, that is,” I said.  “I do notice that the more stable my blood sugars are, the more stable they remain.  It’s once the bounce starts that it becomes gross. My Dexcom graphs start looking like giant letter Ms.”

“Not over-treating a low is very important, but I know it’s a tough thing to avoid.  That panic drives you to eat until you don’t feel low anymore, which can take up to twenty minutes.”

“So I need to distract myself while low?”  (Like I’m not already distracted enough at a blood sugar of 40 mg/dL.)

“Whatever you can do to treat the low without overdoing it, yes.  It can help stop that vicious cycle.”

Lows aren’t as prevalent now as they were a few months ago, but they do hit every once in a while.  (As irony would have it, I’m writing this blog post while low.  But I only had three small sips of juice.  And now I’m waiting patiently.  PATIENTLY.  SEE HOW PATIENT I AM?!)  I’m trying to be patient while low, and waiting out the panic until blood sugar serenity sets back in.  I thought about crocheting while low, but decided that would be an epic exercise in dropped stitches.  Thought about jumping on Twitter while low to pass the time, but that would end up looking too much like drunk Tweeting. And I can’t whistle, or else I would fashion up a low blood sugar tune to pass the time.

So I’ll try to sit.  And wait.  And pretend that my brain and my body aren’t freaking out while I wait for the glucose to hit my blood stream, the same mantra running through my head while the adrenaline runs amuck in my body:  “More willpower than carbs.  More willpower than carbs.”

Not What She Thought I Was Doing.

When you get into the car after going for a run and see a blood sugar of this:

… it’s way past time for glucose tabs.  So when you reach into the Spibelt you’re wearing to retrieve the glucose tabs that you stuck in there, encased in a plastic bag once used for diaper discards instead of the travel tube because you forgot that at home and you didn’t want to have the Dexcom receiver covered in glucose dust, it might look, to an innocent bystander, a little like you’re eating dog poop from a doggy clean-up bag.

“They’re glucose tabs!  I have diabetes, and I’m having a low blood sugar reaction,” I blurted out to the woman standing a few feet away, staring at me as she stood with her car door and her mouth opened.

“Oh thank goodness!”  She laughed, relieved.  “Because I thought you were … you know, I thought you were doing something you aren’t doing.”

“Nope.  Not eating dog poop.  Thanks, though.”

Strip Safely: Taking to Twitter.

(Note that the banner looks like a test strip.  Clever, eh?)

Wednesdays are usually a diabetes-heavy night on Twitter, since it’s the night that the #DSMA conversation takes place (at 9 pm EST – check out the #DSMA webpage for info, and for tips on joining the conversation, click through to this post on Diabetes and Twitter).  Lots of #diabetes and #DOC hashtags happening on Wednesday nights.

So let’s add one more to tonight’s agenda?  YES.

The Strip Safely website offers the following details on what’s at stake, and how you can get involved:

“Please Tweet Congressional leadership and your elected officials, letting them know how important it is for their aides to attend the Diabetes Technology Meeting: ‘Verifying the Performance of Blood Glucose Monitors Following FDA Clearance.’

Click the ‘Tweet about Meeting’ link next to a Member’s name to send a tweet asking them to send a staff aide to the September 9 Diabetes Technology Society Meeting. Not sure who your Representative is in the House? Use this link: http://www.house.gov/representatives/find/

All U.S. citizens, regardless of state, should tweet the Senate and House Leaderships.

Then, please, get creative and send additional positive messages to help the diabetes community build friends in Congress. (Include the hash tag #StripSafely.) Feel free to use this link to our letter for your tweets: http://www.stripsafely.com/?page_id=618

Diabetes isn’t partisan about whose life it impacts. We shouldn’t be partisan in seeking support for safe tools to say healthy.”

If you’re living in the United States, tonight is a night to raise awareness, and a ruckus, about how test strip accuracy, and reliability, matter to all people with diabetes.  Send your Tweets out between 8 – 9 pm EST, before #dsma.  Our elected officials need to know what matters to us, and taking to social media is one way to show them how many of us want – need – to be heard.

Going Solo.

Seven weeks is a long time.

It’s a lot of garbage days (I hate, hate taking out the garbage, especially since we have a crew of vindictive raccoons who have made it their agenda to bust into the garbage cans of everyone on our street, spreading trash all over the place and laughing maniacally whilst wearing hats).  Seven weeks is a lot of grocery store visits and pharmacy trips.  It’s a ton of bills.  Seven weeks is so long that your brain turns to inoperable mush.

Chris came home yesterday, after being away for seven weeks on a film shoot.  I don’t discuss much about his job here because it’s his news to share, but for the last two months, it has been hard not to discuss his absence, since it was affecting everything about my life.  Normally, our respective business trips are short.  For me, being away for a full week is a tremendously long time, and that is an anomaly.  For Chris, his travel jaunts are less frequent but usually longer, sometimes dipping into the eight – ten day away range.  This is something we’ve learned to handle, as a family.

But seven weeks?  Eff that.

Seven weeks is a long time to spend thinking about single parents and to build up even more respect for them, as the experience redefined “challenging” for me.  And I only experienced simulated single-parenting, my husband away but with a timeline for return.  It was while he was gone that I revisited the post-pregnancy feeling of not knowing whose needs to tend to first:  mine, or my daughter’s?

Unless I was away for work, I went to sleep every night with Birdy sharing a bed with me.  (Which was fine, except for the nights when she had a nightmare and would wake us both up, hollering about “the lemons are watching me!!” or the mornings when I’d wake up with the help of her tiny hands prying open my eyelids.  “Good morning, Mawm!”)  Every morning kicked off with a Birdy focus, unlike regular mornings, where the first thing I do is test my blood sugar and then go retrieve the kid, knowing I have Chris as back-up.  Good diabetes habits that I have forced (and then enjoyed) for the last year or so went a bit pfffft as Birdy became the focus and I was flying solo.

“But your health needs to come first, so that you can best care for your daughter.”

Shut up;  I tried.  Everything was a circus.  For five of the weeks of Chris’s trip, I was finishing up final edits on a book I’m writing (submitted to the publisher two weeks ago – more on that later!), which meant that once Birdzone was in the sleepzone, I was up until all hours, combing through pages to tweak content.  And the last two weeks of Chris’s trip included two trips for work, leaving my daughter under the capable (and so appreciated) watch of my mother.  “A good night’s sleep” was a laughable goal.  “Exercise” became either chasing my daughter while she rode her bike at a breakneck speed or brief stints on the ellipmachine in the basement (because going to the gym/for a run while she was awake wasn’t an option, and most times I was so spent that I couldn’t eek out much in terms of exercise).  Emails went unanswered.  Deadlines were pushed.  Pigtails were installed at uneven angles.  Bananas ripened and rotted due to neglect.

(But we always had gluten-free banana bread baking, because that has become a favorite past-time of the Bird’s.  So there was that.)

Diabetes became like a second kid, only one I don’t want to snuggle with.  It needs to be walked.  Fed.  Checked on and monitored.  It’s a needy little sucker.  When it whined and needed tending to, I had to explain to my daughter why we needed to wait a few minutes.

“Do you have whoa bwoodsugar?  Your Dexcom is howering [hollering].” Birdy asked me when I was popping glucose tabs into my mouth, car keys in my hand.

The term “whoa bwoodsugar” took on a whole new meaning when I was solely responsible for my daughter.  Being a parenting soloist for seven weeks made diabetes management pretty freaking tricky.  I’m thankful Chris is home now, because for the duration of his absence, my target blood sugar went from 150 mg/dL instead of 100 mg/dL, in efforts to avoid hypoglycemia while I was the only adult in the house.  My meter average followed suit, which was a frustrating increase after so many months in a comfortable zone, but I knew it was a temporary fix.  My job was/remains to take good care of my kid, and that’s hard for me to accomplish when I’m low as all hell.  It was an enlightening (read:  WTF) experience, and one that, for all of its challenges, I’m glad I proved to myself that I could handle, thanks in large part to friends and family, and the blessings of a flexible job.

But, for a dozen different reasons, I’m so glad Chris is back.  Because, at the end of the day, he’s the one who gave those hats to the raccoons in the first place, so he should be the one doing battle with them.

 

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