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Gluten-Free Bread Showcase.

For those who are unaccustomed, gluten-free bread is kind of terrible.  It’s like the bread can’t commit to being bread.  It starts out strong – looks good, smells good – but once you try to make a sandwich out of that sucker, it falls apart into a crumbly mess in a matter of milliseconds.  For the last year, I’ve been entirely gluten-free (and I feel better for it – more here on the how and why), and over the course of my gluten-free adventures, I miss proper bread the most.

There are some decent options, though, and they’ve been tested by adults (Chris and I) and kids (Birdy) alike.  Here are some of the top contenders in the Sparling household:

Udi’s is the first kind of gluten-free bread I’ve ever tried, and I want to like it more than I actually do.  It’s not bad, but it’s my least-favorite option.  The pieces of bread themselves are tiny, the bread can’t hold up unless it’s toasted, and when it comes into contact with peanut butter, it becomes sludgy almost immediately.  But it will do in a pinch, and the other Udi’s options are infinitely better than their actual bread.  (Like the hamburger buns.  Those are legitimately awesome.)

Rudi’s is slightly better than Udi’s, but the similarity in names confuses the hell out of me.  Are Rudi and Udi brothers fraught with conflict who once had a unified bakery but then split off and created their own gluten-free fortresses?  Whatever the case,  Rudi’s bread is slightly studier than Udi’s but with the same “better when toasted” consistency.  The pieces of bread seem slightly bigger than Udi’s on the whole.  This brand is a little better but only marginally.

Three Bakers was my favorite bread until two weeks ago (more on that in a second).  This bread is decent in size, better than Udi’s or Rudi’s in consistency, and doesn’t have to be toasted in order to be tolerated.  This bread can hold up to cold cuts and doesn’t shrink and die when touched by condiments.  Three Bakers hold up pretty well when compared to the other kinds.  And it makes bangin’ French Toast.

 

For a long time, the frustrating fragility of gluten-free bread had me baking my own bread, and the preferred bread mix was Pamela’s.  While I’ve made my own bread from scratch before, it takes a reasonable amount of time, and Pamela’s mix on the gluten-free setting for the breadmaker works really well.  It’s thicker and more moist (worst word ever but it applies here) than the store-bought breads, but it falls apart pretty easily when not toasted.  (Sensing a theme here?)

Two weeks ago, though, I found a real winner.  A REAL WINNER.  The Schar brand of bread popped up in the gluten-free section of our local grocery store and holy shit, this stuff seems legit.  It can hold up without being toasted, which is the first kind of GF bread I’ve found capable of unlocking that achievement.  It has a consistency and texture closest to regular bread (in my opinion) and it stood up to the sandwich-in-a-cooler-on-the-beach-for-five-hours test.  I realize I’m holding this stuff up against a strange standard of failure (“This bread sucks the LEAST!”), but it’s been the most successful substitution I’ve found in my 12+ months going gluten-free.

The main drawback to all of these options?  They are pricey.  $5 or $6 for a loaf of bread is ridiculous, which prompts us to buy less of it and embrace other non-bready options more.  But the gluten-free world keeps expanding, and as someone who dove in headfirst and ditched a year’s worth of bellyaches, I’m wicked grateful for these options.

Slightly Charred.

Diabetes burnout and social media burnout have a tendency to go hand-in-hand for me because it becomes tiresome to document my failures.

“No, the failures of your pancreas,” said a friend.

Nope.  The failures of me, pancreas and all.  I can’t separate the two.  Diabetes challenges me emotionally and physically because I am lucky enough to deal with a disease that offers me a fair amount of control … which translates into a predictable to do list.  As much as I try to reduce my level of responsibility when it comes to this crap, I have to own my role in this disease.  It’s not something I could have prevented, but it is something I have to deal with.  I look at other health issues in my life and realize how little influence I have over them.  And then I look at diabetes and I’m forced to acknowledge that this disease is a confluence of intention and reaction.

Writing about diabetes has become hard some days.  It used to feel good to write about a low blood sugar and get that story out there because it felt like a purging of bad feelings, and the flood of “me, too!” moments made the edges of frustration softer.  Now there are moments when sharing feels pointless; no one needs a reminder of why my disease can be a pain in the ass … least of all me.

I have good intentions.  I intend to take care of myself, and despite the variables that influence diabetes outcomes, I make efforts.  (I exercise.  I eat well.  I don’t smoke.  I am proactive with my medical appointments.  I check blood sugars and take insulin.  I list things that seem smug, like the aforementioned list.)  But diabetes is still diabetes, and I am still reacting to the disease a fair amount of the time.  Reacting to a low (eat something!) or reacting to a high (bolus!) or reacting to a skin irritation (Toughpad me) or reacting to frustrations related to the diagnosis of complications (eyeball fuckery) or reacting to the underlying theme of always hoping for the best and yet being pragmatically prepared for the worst.

Community helps me process this stuff.

Community is a good way for me to manage my emotional health as it relates to diabetes (directly).  Connecting with peers helps me find my footing in moments when I feel like diabetes is dominating.  But that sounds so formal, like secondary headline on a journal article.  The diabetes online community and all this blogging stuff has given me so much in terms of emotional health success.  So what am I doing, writing about social media burnout?  I actually feel stupid saying that there can be burnout from social media, even though I know there can be.  It just feels like the most first world issue there ever was.  Almost like having too many pairs of sturdy shoes – “I simply cannot manage all of the opportunities that are available to me!  Woe is my woe-crammed self.”

So am I burnt out?  Or just slightly charred?  And do I need someone’s permission to voice this issue?  (No.)

Sometimes I question my decision to (over)share so much of my diabetes process in a public setting.  Putting information out to the Internet invites strangers to comment and critique, which is productive when the discussions are empowering and awful when the discussions are cruel.  I’ve had a lot of positive experiences overall via the Internet but it’s been a mixed bag at times.  Which I’m not surprised about – not everyone will like everything, or support everything, or spell everything correctly – but at the same time, it surprises me when I see people rip others apart for their shortcomings or vulnerabilities.  Watching people run commentary that’s hurtful detracts from the nice, mellow community vibe that I appreciate most.  Basically, sometime people (myself included) are dicks, and I hate when that happens.  It makes it harder to share openly and to support.  As the years go by, I want to share less because I want to protect my right to fuck up.  It’s a weird halfway, because the moments where I fuck up are the ones I need the most support during.

So what’s the point of this post?  Here you go:  On September 1st, the team at Diabetes Daily wanted to generate some discussion about social media burnout.  And I hope people talk, because discussions like these make our community stronger.  Or at least that’s the goal.

It’s not about curating a perfect online existence; it’s about living a real, healthy life even with the raw and ragged edges.

Diabetes Lifehack: Travel Tape.

Sometimes it’s an insulin pump infusion set that starts to peel back.  Other times it’s a Dexcom sensor that gives up on the edges and needs reinforcement.  And there are times when you just need a band-aid for one of those rogue blisters that pops up.

Which is why I keep little slips of Opsite Flexifix tape tucked into my wallet.  Because you never know when you might need an (opsite flexi)fix.

#diabeteslifehack

A photo posted by Kerri Sparling (@sixuntilme) on

(There you go, Opsite.  Your new tagline, perhaps?)

 

Bring Pants.

Last night, I unpacked the suitcase I had used a few days earlier for a trip to Toronto for a conference. And then I promptly refilled the suitcase with clean clothes to prepare for my trip to Washington, DC today. It’s kind of exciting but also a wee bit of a bummer to be away from home so much.

I travel quite a bit, mostly for work-related events that bring me somewhere for a night or two, and then shuttle me back to Rhode Island. It’s a big departure from when I was in my 20′s, when I didn’t travel much at all. My 30′s appear to be the decade of departures (and arrivals), and over the course of the last few years, I’ve made a point to streamline how I travel. I used to bring the biggest suitcase in my arsenal and cram it, but now I make a game out of how far I can get with one, small carry-on.

Travel bird.

A photo posted by Kerri Sparling (@sixuntilme) on

A reader emailed me a few weeks ago (I read every, single email but I am a sorry creature when it comes to timely responses) about travel and diabetes, asking what kinds of tips I would have for would-be travelers. I ran through a quick list in my head, and it was strange to see how what was once a hyper-prepared, diabetes-obsessed list has (de-)evolved into a quest to not bring more than I need. But there are still diabetes nuances shoved in there.

  • You need to have your government issues identification. You aren’t able to rent the car or board the plane or stay on the train if you don’t have your ID. Smart to start there.
  • You also need to be wherever you are well in time to get onto the plane, train, or spaceship. My friends make fun of me for arriving at the airport two hours before my flight – “Do you really need to get there so early? Don’t you know how to do this?” – but being on time alleviates a lot of anxiety for me. So I get there early, damn it.
  • You need your medications. Whatever stuff you need (insulin? blood pressure medication? test strips?) make sure you take, and bring a little more than you need. Most often, I travel for two or three days at a time so I bring a week’s worth of medical supplies. (It goes up from there.) When I travel domestically, I don’t worry about original pharmacy packaging for my insulin, etc. but when I travel internationally, I make sure I have the box the insulin came in.
  • People talk about a note from their doctor explaining what the different diabetes devices are and do, and I carried one of these notes for a year or two. But I haven’t had much trouble at all with explaining things, and the few times that TSA wanted to go full-grope on me, it was minimally offensive (except that one time and I hated that one time).
  • You also need pants. Or some kind of nether region undergarment that covers up your parts. Not wearing pants or similar will have you ushered out from many different situations that escalate pretty quickly.
  • And in my travels, I need to have a jar of glucose tabs or other fast-acting low blood sugar treatments within reach at all times. You never know when you’ll need to treat a low (or when you might need a burrito) and it sucks to have what you need most tucked, and out of reach, in the overhead compartment.
  • And lastly, you need a destination. Our trip a few weeks ago brought my family and I to Birmingham, then Huntsville, then back to Birmingham, AL. It was a very mellow trip (lots of very nice people, some rocket ships, a fistful of rage-filled mosquitos) and we saw some of the northern Alabama sights. (Like this rocket and this space suit and this beautiful bride.)

When I was younger, the biggest travel hurdle for me was actually booking the trip. Anxiety about traveling and being away from my comfort zone kept me from experiencing a lot of things I now regret missing. Over the last few years, I’ve broken away from my trepidation and am trying to be braver. (And judging my the miles I’ve logged over the last few years, I think I’m making up for lost time.)

Diabetes Dominator.

It’s nice to talk with other people who have diabetes.  It’s even better to laugh with other people who have diabetes, finding some levity in the diabetes moments that seem like they’re shuttling towards chaos.  And a few weeks ago, I had the chance to both talk and laugh (hard) with the Diabetes Dominator herself, Daniele Hargenrader.

We talked about a broad range of topics, from diabetes diagnosis to growing up, from intimacy and diabetes to my sloppy swipe at tips for people living with diabetes.  And it was fun.  She’s a force to be reckoned with, and I’m really happy she asked me to visit her video series.

For more from Daniele, you can check out her website.  Thanks for watching (and thanks to Daniele for not yelling at me for talking too fast).

Panel: Challenges in Healthcare Leadership.

Yesterday, I took part in a panel discussion at the Executive Master of Healthcare Leadership Class of 2017 Convocation at Brown University (say that three times fast … I sure as hell can’t) and part of our discussion was about leadership in the healthcare space.

My fellow panelists were folks who were employed in the healthcare arena (Michael Hudson, EVP of Blue Cross Blue Shield, Secretary of the Executive Office of Health and Human Services Elizabeth Roberts, President and CEO of Care New England Dennis Keefe, Director of Alnylam, Ironwood, Momenta Pharmaceuticals Marsha Fanucci … and me), and I thought about who I work with:  medical device companies, diabetes advocacy organizations, magazines, publishers, etc.  I like the work that I do and I like the organizations I work with.

But, but, but.  Who do I work FOR?

The people I work for are people touched by diabetes, and to be honest, that starts with me and my family.  (My oxygen mask on first, right?)  One of the attendees yesterday asked me what kind of advocacy work I did as a kid with diabetes, and I admitted, “None.  I decided to get involved when I was in my mid-20s.  Before that, I didn’t do much at all in terms of diabetes advocacy.” It took time for me to grow into a desire to connect, and that desire was driven by isolation.

I joined this community because I didn’t know anyone in my day-to-day who was dealing with diabetes.  That absence of community drove me to seek out my peers and find people with whom I could be weird together.  And now this community of like-pancreased people can lean on one another and learn from one another in ways and about things that healthcare professionals aren’t able to provide.

Spent some quality time yesterday with the EMHL class of 2017 at Brown University. #rhodypride

A photo posted by Kerri Sparling (@sixuntilme) on

I spoke about the positive influence of patient communities a lot yesterday.  When discussions turned to the silos of healthcare and the dissemination of information, I advised people to take cues from patients who are sharing their stories online for a how-to.  “If you want to see information that’s crowd-sourced and self-policed, hopefully without a whole bunch of egos and competing interests, the online patient communities can give you some tips on how it’s done.  It’s not medical advice but it is honest and shows what illness looks like in the wild.  Patient communities take information from medical teams and integrate it into real life, with better health outcomes as the goal.  And that’s what we all want, right?”

Discussions about “what makes a good leader” took up the better part of the afternoon discussion, and I leaned heavily on bursting the bubble of privilege.  “My job as a voice in this community is to recognize what I have access to and what others are striving to gain access to.  My refrigerator is stashed with bottles of insulin, while some of my fellow people with diabetes are panicked about where their next injection will come from.  I need to remember that and raise their voices, whenever I can.”  (See also:  Spare a Rose.  See also also:  CGM Medicare Coverage.  See thrice-so: DPAC)

I’m hopeful it was an interesting panel discussion to listen to; I learned a lot by listening to my fellow panelists.  Secretary Roberts repeatedly voiced concerns about the different factors that play into health (socioeconomic, literacy, etc) and urged discussions about improving society’s views on proactive health efforts instead of reactive ones.  Dennis Keefe voiced hopes for true universal healthcare and how we can transition to that system most effectively.  Michael Hudson made an excellent point about throwing bias and stigma aside when communicating with one another; we aren’t just “the insurance guy,” or “the patient.”  Each panelist brought their unique flavor to the discussion, and I did my best to inform this EMHL about the crucial need for input from patient perspectives.

One of the other panelists mentioned that high deductible insurance plans force patients to have “skin in the game,” but I’ll counter that being responsible for paying doesn’t give us skin in the game.  We’ve always had skin in the game.  Now we have a voice at the table, and it’s high time we raise it for the betterment of our communities.

I’m proud to work with diabetes organizations, but I’m prouder still to work for people with diabetes.  This community, and all perspectives in it, have improved my life and my health in ways I’ll spend the next few decades gratefully and respectfully repaying.

Alabama Scratches.

(Instead of Alabama Shakes?  No?  Might be a bit of a stretch.)

Over the last few days, my family and I were in Huntsville and then Birmingham, AL for a friend’s wedding.  The wedding was beautiful, the trip was fun, and mosquitoes have really taken a liking to me.

Actually, that’s an understatement.  The mosquitoes made breakfast, lunch, and dinner out of me, with a few snacks in between and now my skin is a fresh quilted mess of bites.  Eff.  That.

Mosquitoes have always made me their target over other members of my family, and even on this trip Chris escaped with far fewer bites with significantly less weltishness.  The marks on his skin were gone within a few hours, but mine remained raised landmines of itchiness.  (Birdy escaped with nary a mark on her skin.  I suspect the power of voodoo.)

“How many did you get?”

“Walking to the car just now?  Two more bites.”

(The walk was from the entrance of the restaurant to the car door.)

It became a sport, avoiding the bugs.  Walking from any building back to the car was a flurried attempt to secure Birdy in her car seat and then get into the passenger seat of our rental car.

“Hurry!  Get in the car seat!  Shut the door!” and I’d slide over the hood of the car like Luke Duke.

 

Bugs have always wanted to devour me whole, and I can’t figure out why.  Is it because I shower often?  Is it the soap I use?  Can they smell fear?  Is it because my blood is potentially sweeter than that of my counterparts?  Are they attracted to the smell of synthetic insulin?  Are people with diabetes particularly attractive to bitey bugs?

Whatever the case, I have laundry to wash, a suitcase to unpack, and a million bug bites to itch incessantly.

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