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#DOCasksFDA – Your Feedback is Needed, DOC!

THIS IS THE LINK TO THE SURVEYRead below for more information on the virtual discussion between the diabetes community and the FDA, and how your input will shape that discussion, and potentially our future.

“On November 3 from 1pm-4pm EDT, the Food and Drug Administration (FDA) and the diabetes community will host an unprecedented event to discuss unmet needs in diabetes. As a community, our job is to present the numerous challenges we as patients face each day, and we need your opinions to be a part of this discussion! Please fill out this short survey to share your thoughts on what’s important to you when it comes to living with diabetes. Your feedback will go directly to FDA and help influence the conversation on November 3.

Please answer the questions that follow as honestly as you can. Your answers could affect the way the FDA perceives unmet needs in diabetes, and ultimately, how it reviews the risks and benefits of new drugs and devices.”

THIS IS THE LINK TO THE SURVEY AGAIN.  IT IS IN ALL CAPS BECAUSE IT IS IMPORTANT AND YOU ARE IMPORTANT AND YOUR OPINIONS ARE IMPORTANT.  As a community, we need to raise our voices.  Please show the FDA that we are many, we are empowered, and we are loud.

Link coming soon so that you can register for the discussion, but in the meantime, please fill out the survey and share it with your DOC friends.  And thanks!!

When Good Insulin Goes BAD.

Ninety percent of the time, my high blood sugar has an identifiable reason, and there’s a cluster of common causes.  Did I under-estimate the carbs in a snack and therefore under-bolus?  Did I over-treat a low blood sugar?  Did I eat without bolusing at all (it happens)?  Is there a lot of stress floating around that I’m responding to?

Most of the time, those questions cover the why.  Once in a while, my highs are for rogue reasons, like an air bubble in my pump tubing.  Or when I eat something carb-heavy right after an insulin pump site change (it’s like that first bolus doesn’t “catch” somehow).  Or I forgot to reconnect my pump.  Or if the cat bites through my pump tubing.

But rarely, if ever, is one of my high blood sugars the result of bad insulin.

Except it totally happened last week, when two days of bullshit high numbers had me mitigating every possible variable … other than swapping out the insulin itself.  (And clearly I’m stubborn and/or in denial about the quality of my insulin’s influence on my blood sugars?)  I rage-bolused.  I exercised.  I low-carbed the eff out of an entire day.  I did a site change at midnight to take a bite out of the highs.  Nothing.  The downward-sloping arrow on my Dexcom graph had gone on hiatus.

(Always a punched-in-the-gut feeling to see the word HIGH on a Dexcom graph, accompanied by an up arrow.)

But ditching the bottle of insulin entirely and swapping in a new Humalog vial?  That did the trick in a big way.  For once, it was the insulin.  Next time, it will surely be the cat.

Opening a Can of Gluten-Free Pumpkin Whoop Ass.

I’m five-ish weeks into a gluten-free life, and the waah waaaaaah is starting to wear off.  (I can’t pretend to be above the waaah.  Diabetes is such a food-anchored disease, and an additional restriction acts as an extra fun vacuum, sucking the fun out of meals even more.)  But I’m rounding a corner with this new (and admittedly self-imposed, but with good reason) restriction, and it’s time to start branching out.

My mother-in-law is an excellent cook and she gifted America’s Test Kitchen:  How Can It Be Gluten-Free cookbook to Chris and I after learning about our gluten-free leanings.  For a few weeks, I avoided opening it because I was feeling crummy about the transition, but this morning Birdy and I decided to tackle the gluten-free pumpkin bread.

I don’t know what copyright infringements exist when it comes to recipes, so I’m opting to not post the recipe here (I’m scared of the Test Kitchen people), but I will confirm that the bread, although a little bit of a pain in the butt to prepare, was delicious.  IS delicious, because it’s still sitting out on the kitchen counter cooling and the whole house smells terrific.

The bread recipe only called for 1/2 a cup of pumpkin, so we had the majority of a can of pumpkin left over, all nice-smelling and tempting us to make something else.

“COOKIES!!!” yelled Birdy, which is her answer to just about everything.  (A close second to “Why?”)

“Okay, let’s hunt down some cookies that have pumpkin in them,” I replied.

“Why?”

“Because … you just said cookies?”

“Oh yeah.  I forgot.”

Moving on.

We found a gluten-free pumpkin sandwich cookie via Google with these puffy, awesome pumpkin cookies and a cream cheese filling, so have at it we did.  Navigating the gluten-free curve has been interesting, though, because I am learning how many random things have gluten in them.  Like vanilla.  The vanilla in our cupboard is imitation (don’t hate) and according to Chef Google probably contains gluten (and also anal secretions from beavers WTF), so we used the makeshift substitution at the bottom of the recipe of 1/2 teaspoon ground cinnamon plus 1/4 teaspoon ground ginger, 1/4 teaspoon ground nutmeg and 1/8 teaspoon ground cloves.

The end result, though visually clumsy, was also delicious.

It’s easier for me to avoid desserts most of the time because eating less junk makes the most sense for me, diabetes-wise.  But for those moments when I’d like to enjoy something sweet, I’m glad there are options that won’t wreck havoc on my body.  Gluten-free doesn’t have to be gross, and I’m slowly learning that fact.

Guest Post: No Child Should Die of Diabetes.

Veerle Vanhuyse is off and running … literally.  Verlee lives with type 1 diabetes and is running the NYC Marathon in a few weeks, aiming to raise awareness and funds for the IDF’s Life for a Child program.  Today, I’m proud to be hosting a post from Veerle about her marathon goals!

*   *   *

A quarter of a century it’s been already but it still feels like yesterday. About to turn 16 and counting the days to leave for France with a bunch of teenagers to learn the language. I hadn’t been feeling well over the last few weeks and my trip to France became a trip to the hospital. Diabetes! I took my very first shot of insulin on my birthday. Sweet sixteen indeed!

In the beginning, I did really bad, didn’t take care of it at all. Only in my late twenties(!), I took diabetes more seriously and got my a1C’s from 9+ to 5%.

Eighteen years and a child later, I started running. And in eight years time I went from 100 meter and being exhausted (I’m not kidding), to 5K, 10K, half a marathon and finally the full monster; Berlin Marathon 2012.

That sad girl back in 1987 would’ve never guessed she would be doing what I’m about to do in one month:  Being at the start of the mother of all marathons, New York City 2014!

Needless to say, I am very excited about this upcoming event. But make no mistake, there’s no such thing as knowing exactly how to anticipate with the sugars before a long run, or any run for that matter. Every workout is different, depending on so many factors all diabetics deal with every single day.

Three weeks before the Berlin marathon, I suddenly realized I should grab the opportunity to raise money for diabetes. And I did. 1.700 euro went to research at the University Hospital in Leuven, Belgium. But this time I wanted to do something more specific. It didn’t take me long to find a new great goal. Surfing the web for a few hours I found a wonderful initiative called ‘Life for a Child’ supported by the International Diabetes Federation. I read about Dr. Marguerite De Clerck, a Belgian nun who spent the past 55 years treating children with diabetes in the Democratic Republic of Congo.

It instantly hit me! THIS was a project I immediately believed in and I wanted to make a difference for.  In the end my goal is comparable to the wonderful Spare a Rose, Save a Child campaign: Provide children and youth in developing countries the basic care they need to stay alive with diabetes.

So far, I raised 2.500 euro, and I’m working really hard to at least double this amount.  I’m hoping to help families in Kinshasa keeping their loved ones alive.

It is a clear message: No child should die of diabetes.

*   *   *

I asked Veerle to provide a bio, and the one she sent to me in first person language was too laced with passion to edit in any way.

Here’s Veerle, according to Verlee:  “There’s the Belgian, so called ‘outgoing’ 43 year old, who talks a lot and who’s always in for a joke. And there is the T1 diabetic since 27 years, who can be really sad about the battle she has to fight against the disease every single day. “She deals with it really well,” people – even close to me – would say. They have no idea. One way to “deal with it” is running ! A lot! And in less than 4 weeks, I’ll be living my dream: NYC marathon ! Last race, because there’s also arthritis in my foot now. With this last 42,195km, I’ll be raising money for Life for a Child, to provide children in Kinshasa with the necessary supplies, proper care, and some decent education they need so badly. I am extremely passionate about it, and I want to scream as hard as I can: Please people, read my website and find it in your heart to donate, donate, donate!!!”

To donate to Veerle’s efforts, please visit this link on her websiteThanks for raising awareness, Veerle!

LOW.

BEEP!BEEP!BEEP! from the Dexcom receiver on the bedside table.

I heard it beeping for a long time.

Woke up with sweat pouring off my forehead and running down the side of my face, pooling up in my ears and in my collarbone.  The pillow was soaked.  My hair was soaked.  An outline of me underneath me, the line drawn with the panicked sweat of hypoglycemia.

Panic.  But tempered panic, since I was so deep into the low that I was slow in recognizing anything.  My status updated slowly:  This is a low.  This is a bad, bad low.  Eat something in a hurry or you’ll probably die.

The juice box on the bedside table was hard to assemble.  Plastic sleeve around the straw, poking the straw through the foil hole … all actions I’ve done before but it took 30 seconds apiece for me to figure out how the whole thing worked.  I drank the juice as fast as I could, in just a gulp or two and then I settled back into my self-made sweat lodge.

A few minutes later – maybe two, maybe twenty – Birdy arrived fresh from a nightmare, clutching her blanket and asking to sleep in our bed because she was scared.  I don’t remember gathering her up, but I do remember putting her on the outskirts of my dampness, snuggling her up against her still-sleeping father.  I was scared, too, still arranging blankets, trying to find a cool, dry section.  I looked at the Dexcom, and it only told me I was LOW and had been LOW for a long time.

Normally, I get up and brush my teeth after a low blood sugar.  Sometimes I use the hairdryer to dry my hypo-damped hair.  This time, I couldn’t move my ankles without feeling the dizziness flooding up to my hairline.  I used the edge of my t-shirt to mop the sweat from my ears.  So gross.  But necessary.

This morning I woke up chilled to the bone, the result of falling back asleep soaked to the skin and then drying off in the cool, fall night.  The Dexcom told me I had risen up safely to 109 mg/dL, and my meter confirmed that result.  My family bounced up and was ready to start their day, and I followed behind them, nursing the hypoglycemic hangover, grateful for technology that woke me up and for portion-controlled hypo treatment, but pretty fucking pissed off that diabetes was the nightmare last night.

 

Burninating the Peasants.

Her consummate V’s were spot-on, and once she drops that second arm and beefs up the first one, I think she’s got a good grip on the Trogdor. (She spent the car ride to the zoo working on her “What’s that dragon’s name again? Oh yeah – TROGDOR! He does the burninating, right, Mom?”)

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Someone is a little obsessed with Trogdor. #consummatevs

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For your reference and because it’s so timelessly awesome:

That’s it. :)

What Does the DOC Mean to You?

Two weeks ago, the #dsma chat was centered on the how and why of people’s participation in the Diabetes Online Community (DOC), and after chat participants shared what brought them to the web for diabetes information, the last question of the night asked them what the DOC means to them.

The answers created a quilt of community and comfort that can’t be denied:

And for me?

Tune in to tonight’s #dsma chat at 9 pm EST. For information on how to get started with Twitter, jump back to this Diabetes and Twitter 101 post.

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