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#GoSebGo and #GoBionic.

Clearly, Go HASHTAGS!

This morning I wanted to share two videos that ventured their way into my inbox recently, from folks in the diabetes community who I support whole-heartedly.

The first is from Seb, who is STILL running across Canada. What’s your plan for today? Mine is to get some writing done while sitting on my ass on a flight to California. Sebastien Sasseville will be running through the Rocky Mountains on Day Eighty Billion of his solo run across Canada. Give Seb some love through Outrun Diabetes today and let him know you’re thinking about him and his journey to inspire.

The second video is from a group of parents and PWDs supporting the Bionic Pancreas.

To learn more about the Bionic Pancreas, you can click here or read this. Or this. Or this.

Go forth and watch videos.

HypoPedicure.

“Mom, can I [something something] ?”

“Sure, kiddo,” I responded.  But I had no idea what she was asking me – her words were swirling around in the fog of my brain.  My blood sugar was 38 mg/dL and my Dexcom was wailing.  Chris was a few feet away, stirring something on the stove while he kept an eye on his wife.  “My blood sugar is really low, so I’m going to sit here for a few minutes.”

“Okay, that’s fine.  Do you need some glucose tabs?” she asked, sitting on the floor near my feet.

“I already had some.  I’ll be okay in a minute.  Don’t worry.”

What was directly in front of me hard sharp edges of focus, but everything on the peripheral was hard to see.  My body was concentrating on chewing and swallowing and trying to slow down the speed of my heartbeat in my ears.  I knew stable blood sugars were coming, but they needed a glucose jump-start.

“Okay, Mom.  I’ll just do this while I wait.”

And it wasn’t until later that night, after she had gone to bed and once I was readying myself for sleep, that I realized she spent the duration of my hypoglycemic episode painting my toenails bright pink with a glitter topcoat, globs of glitter and pink stretching all the way up to my ankle.

Pros and Cons of Going Gluten-Free. (and a brief lament about the smooshed banana)

It’s been about seven weeks on this “no way, gluten!” lifestyle, and I’m starting to find my footing.  But there are still many pros and cons to balance, so I’m listing them here.  That way, I can look back at this post in a few months and be all, “Pfffft.  Whiner.  You’re in the zone now.”

Here we go – PROS and CONS of Going Gluten-Free in ALL CAPS at times because that’s the only way my brain can operate this morning.

CON:  It’s a pain in the ass, doing this.  Reading food labels for carbohydrate content and grams of sugar in pursuit of better blood sugar control is second nature to me by this point.  After 28 years with type 1 diabetes, I’m comfortable with the carbs.  But trolling labels for that bright, shiny GF logo, or reading through each ingredient to ensure that I’m not inadvertently eating gluten is a new adventure, and one that I find very intrusive.

PRO:  As a result, weight management has been easier lately.  Which I guess is a plus but at the same time, I’m hungry, so I can’t call this a total pro.

CON:  I’m hungry.  (See above.)  All the time.  Mostly because I’m unsure of what to eat, and that insecurity leads me to eat the same things all the time.  Staples like hard boiled eggs, grilled chicken, spinach salad, yogurt, almonds, and every fruit I can get my paws on dominate my days.  Menu items like gluten-free pizza, butternut squash (done with GF ingredients), and chicken soup are being explored, but my natural inclination to be a lazy chef makes this sort of exploration tougher.

PRO:  Eating the same things all the time makes me very familiar with how they map out, blood sugar wise.  So I’m best able to pre-bolus with precision and my post-prandials aren’t gross.  This is boring as eff, but effective for diabetes management.

CON:  Low blood sugars have been really weird lately, especially the ones that follow a visit to the gym.  Before going gluten-free, I’d eat froast or some other glutened up snack to keep my blood sugar steady through cardio (yes, there are other options, but I can’t pretend to have chomped on kale during a run – that would be a big, fat lie and kale hates lies).  Now, I’m erring on the side of fruit and sometimes those sugars get in and out of my system too quickly to hold me for an entire workout.  I’m still figuring out what foods work best to deal with during- and post-exercise hypoglycemia.

PRO:  Glucolift Wildberry tabs are gluten-free.

CON:  Traveling is weird now, too, keeping gluten off my plate.  Airports are not designed for people with dietary needs or preferences, especially little airports like the one I frequent here in Providence.  Finding foods that are gluten-free while on the road is tough, with little exception.  Once I land somewhere, I’m fine, but while in transit, I keep my bag stashed with snacks.

PRO:  I’m learning a lot about what foods travel well.  These gf bars are among my favorites to toss in a backpack, and while they are not as healthy as something fresh, they can stand up to traveling with me and they are more filling than the Southwest pretzels that I can’t eat.

CON:  Bananas do not keep well in backpacks.  They turn brown quickly and often end up smeared on … oh, let’s say the lid of a laptop.

PRO:  I wash my backpack more often than I ever have before, and now it permanently smells like dryer sheets.  Which is a nice contrast to my computer, which smells permanently like bananas now.

CON:  I hate being “that girl.”  The one who asks waitstaff if certain menu options can be made without gluten.  The one who reads labels before taking a bite of anything.  The one who might be mistakenly marked as someone following a “trend diet” instead of someone who is unhappily-but-smartly following through on feedback from her body.  As good as I feel off gluten, I wish I could still eat the stuff and not make waves.

PRO:  I’m learning not to care about feeling slightly embarrassed because DUDE I feel so much better.

“You’re more … you.  The change between then and now is significant,” Chris said the other day.

He’s right.  My mood/disposition/health/everything since kicking gluten out of my diet has been ten steps in the best direction.  All of the non-celiac gluten sensitivity symptoms are gone.  The “head fog” where I would forget what I was doing or what I was about to say has receded.  The numbness and tingling in my hands and wrists is gone.  The ache in my hip joints after running is gone.  I don’t want to spend the afternoon taking a nap on the couch.  My energy is back.  My face is less puffy.  I can chase Birdy without feeling like my feet are in lead boots.  It took months to tune in to how poorly I felt, but now that I’m feeling better, the change is undeniable.

As much as I miss being more carefree about food, a gluten-free diet is the best fit for me.  And after almost three decades of type 1 diabetes, what’s one more food constraint?  So long as coffee and wine remain in the mix, I’m good.

Show Me Your Pump … Or Not.

During a presentation in Duluth, MN last week, I was talking about my family and I used a photo in the slide deck that I’ve used many times before.  It’s one of Birdy, Chris, and I and we’re at some park on a sunny fall day, enjoying the sunshine.

“This is my family.  And right there – RIGHT THERE – is my diabetes.  Can’t miss it.  It’s just THERE and it’s always there.  I love this photo because it shows off my wonderful husband and the daughter I went to the ends of the earth and back for, and I couldn’t be prouder and more in love with my family.  But then there’s that reminder again, the reminder of diabetes and the intrusion it makes into my life.  Like I said, I love this photo.  But I want to Photoshop the hell out of that one part.”

Diabetes has not been a smooth ride for the last few weeks.  Unusual moments like a skunked bottle of insulin and two Dexcom sensors that rolled off my skin way too early, a few low blood sugars that fucked with my happiness a little bit … all stuff that sometimes happens, but lately it feels like it’s always something.

A relentless itchy patch left behind by a Dexcom sensor from weeks ago on my right thigh that, in the middle of the night itches so badly that I scrape at it while I’m sleeping, only to wake up and find blood underneath my fingernails sums up how I’ve felt lately.  (And holy run-on sentence!)  It’s not the actual diabetes moments – the actual low blood sugar, the actual itchy sensor, the actual hour lost to reinforcing to my insurance company that yes, insulin is necessary and should be covered – but the cumulative experience that’s a little more than meh of late.  I’m grateful for access, but having access gives me a perspective that allows for being wildly grumpy at times.  I’m worn out on the self-care crap.  I don’t have any choice but to continue to make the best efforts I can to take care of myself.  Diabetes without self-care becomes chaotic quickly, for me.

There’s no “but,” to that, no caveat.  There’s just a desire to take a sponge and wipe away all the traces of diabetes for just a few hours.

… that, and our coffee pot cracked this morning, so that’s probably not helping my mood.

 

Urgency – #Vote4DM and #DOCasksFDA.

Today is the last day to participate in the #DOCasksFDA survey.  The link is HERE and you can just CLICK ON THIS LINK and I’ll stop using the caps lock key.

Also, if you’d like to contribute your voice and share your dream for the future of diabetes, do it.  Do it via video, if you’re so inclined, like so many others have done.

Also, the Strip Safely team is bringing about a new advocacy initiative, using Twitter to target our legislators.  As the campaign tagline says, “We voted them into office.  Tell them to #Vote4DM.”  There are three diabetes bills that are currently in play up on Capitol Hill, and by visiting the Twitter page for Strip Safely, you’ll see some customized messaging all ready to go for your specific representatives.  For more information on the bills on tap and how you can raise your voice, CLICK HERE (damn it – that all caps button is my best friend these days).

Thank you, as always, for being such a crucial part of the diabetes community.  This whole thing would fall flat without you.  (SERIOUSLY.)

#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.

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