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Posts from the ‘Real Life Diabetes’ Category

Magic Kingdom, Magic Bathrooms.

“Is that an insulin pump?”

I was standing outside of the stall in a bathroom in Tomorrowland, waiting for my daughter to wash her hands.

“Yes, on my arm here?  Yes, it is.”  I pointed to the infusion set on my right arm, the tubing snaking back up my sleeve into my dress.

“Oh!”  The lady smiled really big, relieved.  “Do you mind if I show my son when he comes out of the stall?  He’s five – was diagnosed with type 1 diabetes when he was three.”

“Of course!”

The bathroom continued being a bathroom for a minute more, then her son came out.

“Henry, this lady is wearing an insulin pump.  Remember I told you about those?  Look, it goes right into her arm here!”

His little face was so little, just a few years older than my own son, a few years younger than my daughter.

“Hi, Henry.  I’m Kerri.  I was diagnosed with diabetes when I was seven.  This insulin pump is what I use instead of shots to take my insulin.  Want to see?”

He nodded.

“This is the little spot where the insulin goes in, and this tube connects here,” I pulled my pump out so he could see it.  “And the insulin is stored in here.”

Henry’s mom smiled.  “I was telling you about this!”  She turned to me.  “I was telling him about this.”

“If you touch this screen, it lights up.  Want to try it?”

His face broke into a grin.  I showed him how to tap the 1 … 2 … 3 buttons on my t:slim X2 to wake it up.  “If I wanted to take some insulin to have a snack, I’d press this button, tell it what to give me, and then I’d be all set!”

I turned to his mom.  “Are you guys here for the conference?”

She looked confused.  “What conference?”

Showing her the green bracelet on my arm, I explained that we had just spent the week at Friends for Life, hanging out with friends and making diabetes feel commonplace for a few days.  “So many families go.  Some parents bring their kids who have diabetes.  And in my case, I’m the one with diabetes, so I bring my kid to meet other kids of parents with diabetes.”

(This whole conversation is taking place while our kids are washing their hands and playing with the hand dryers.)

Before the next stall could flush, we’d figured out that we lived close-ish to one another, and that we had some common stomping grounds.  At my urging, Henry’s mom opened my phone and started an email to herself.

“I’ll send you an email after we leave the park with some details on the conference.  And if you have any questions about insulin pumps or connecting Henry with other kids who have diabetes, or anything at all about anything, I’d be so happy to connect,” I said.

All hands washed, we shook them, laughing about the awkwardness of meeting in a bathroom.  And then I sent my now-new favorite email intro ever, opening with, “We just met in the bathroom at Magic Kingdom (great way to start an email, right?) and I wanted to email you right away.

A few days ago, I heard from Maggie.  Our bathroom connection has come full circle.  Advocacy can happen anywhere: in a conference hall, on an airplane, in the grocery store.  Even in a bathroom at Disney World, our community is flush with connection and possibility.

Recipe for FFL.

Want to make Friends for Life?  Here’s how:

Ingredients:

1 large Coronado Spring
Millions of humidity molecules
3,000 family members who live with diabetes
1,000 (estimated) Mickey Mouse waffles
22 bowls of glucose tabs
Dozens of supportive siblings
Hundreds of orange bracelets
Hundreds of green bracelets
Several buffet tables of carb-counted food
Add sports central, support sessions, and learning workshops to your taste

Directions:

Take your humidity molecules and mix with the Coronado Spring.  They will combine to become as hot as possible.  Move into your hotel room and be thankful for the conditioned air.

Assess your pancreas. Salute your pancreas if it functions properly and don your orange bracelet with pride. If your pancreas is a thumbs down as far as insulin production goes, put on your green bracelet with pride as you are not alone with diabetes.

Attend focus groups and meet with companies who aim to make a difference in the lives of people with diabetes.  Between meetings, visit the pool and go down the waterslide, mingle with CWD staff and friends at Pepper Market, and give a happy wave to strangers-who-are-not-strangers.

Have fun.  Enjoy healthy meal options that are carb counted (and gluten-free if that’s your jam).  Dance with the DJ at the banquet.  Meet the Disney characters at breakfast.  Get a retinal screening.  Learn about things like diabetes and exercise, and going to college with type 1 diabetes, and new technology options, and parenting and pregnancy.  Collect at the social spots in the evenings and talk about LIFE and some diabetes but not entirely diabetes.

Be thankful that companies and sponsors and donors have come together to make an event like Friends for Life possible.  Thank them for their financial contributions and support.  Thank the fellows.  Thank the scholarship programs.  Thank the staff for their tireless efforts.  Thank your friends and families for being part of this experience with you.

Rinse and repeat for several days, until your heart is full and your voice is gone and the corners of your mouth feel stretched to the brink from smiling.

Disclosure:  I could not be prouder to be a member of this organization as a board member, part of the adults with type 1 diabetes faculty, and a grateful PWD attendee.  My travel and lodging are covered by the organization, but my opinions and dedication to the cause are my own.  Huge thanks to the staff, supporters, and sponsors who make Friends for Life possible.  

If you’d like to make a donation to support CWD, please click here.

 

Looking Back: How Often Should I Change My Lancet? (A “Grost.)

source: Type 1 Diabetes Memes

I’m on the road today, visiting with the Patient Revolution team, so I’m looking back at a post from the past.  But it’s not just any post … it’s a grost.  (A gross post.)  How often do you change your lancet?  I will admit that I don’t do it as often as I should, but I’ve been really trying to do it more regularly.  In efforts to keep my fingertips from hating me.

  *   *  *

(Taking a cue from Glu today because when this post rolled through my feed, I was like, “Hmmm.  A lot now, but before?  NEVER!!”)

Every single time there’s a new meme about changing the lancet in a finger pricker device (nope, that is not the technical term), I laugh because they are all true in that “whoops” sort of way.

Upstairs in the bathroom closet, I have boxes and boxes of lancets for all kinds of different poker devices (again, not the technical term).  All different sizes and shapes and gauges … years and years worth of lancets for half a dozen different devices.  (Except The Guillotine.  That thing was retired decades ago, thank goodness.)  And the reason I have so many lancets stashed?  I went years without regularly changing my lancet.

Gross.  I know.  And I’ve seen that photo of what a needle looks like before use, after one use, and after six uses and yes, it grosses me right the hell out.  But for a long, long time, I changed my lancet once a month.  Maybe once a week, depending.  And I only changed it if it didn’t procure a good blood droplet or if it went into my fingertip and got “stuck.”  (You know what I mean … when you press the button and the lancet deploys, only it lodges itself into your fingertip and has a weird suction feeling when it pulls out?  Horribly horrible.)  Lancet swapping-out was a shameful non-priority for a long time.

Two things made me start changing my lancet regularly:

ONE.  A friend told me about how she’d heard a story about a person with diabetes whose fingertips were downright gangrenous because they didn’t change their lancet.  “Ew, really?”  “Really.”  And even though I stand firmly on the “hope vs. fear” motivation concept, this story about mostly-dead fingertips made me want to throw up.  Then I started searching the Internet for information on needle reuse and the photos made me want to apologize profusely to all my digits.  I had no idea how nasty and serrated the needle edges became after just one use.  I thought about all the times I had injected syringes through my jeans in high school.  I thought about how a box of lancets could last me two years.  I thought about how gross I was.  Gross, gross, groooooosssssss.

TWO.  And then I explored lancing device options.  I had heard really good things about the Accu-Chek Multiclix (mostly from Sara, because she frigging loves hers), and the device was snazzy because it comes with a drum of lancets that automagically swap out, but the size of the thing was too big for the case I kept my meter in.  Switching to the One Touch Delica was the winner, for me, because the lancet gauge is so thin that I’m forced to change it regularly because otherwise, I don’t bleed.  (It becomes that dance of pull back the device, press the button, nothing happens, repeat 10x, change lancet and curse.)  Like it or not, I have to change my lancet regularly or the device becomes useless.

Now I change my lancet once a day.  Every day.  And every time I kill a box of lancets, I feel accomplished because in the last four years, I’ve gone through at least two dozen boxes.

In the 20+ years prior?  Probably the same number of lancet boxes.

ONE Great Weekend.

Diabetes for 30+ years means you’ve earned a “legend” sticker.

“So what made you want to do the TCOYD ONE conference?” I asked the TCOYD team.

“We were sitting around one day having drinks and just said there is so much stuff coming out in the field of type 1 diabetes that we NEED to put on an event with the absolute best of the best speakers and invite every person with type 1 diabetes around the world who we can get the invite in front of,” said Dr. Steve Edelman, Professor of Medicine at the University of California San Diego and Veterans Affairs Medical Center.  He’s also the founder of Taking Control of Your Diabetes (TCOYD).  “Oh my god, the conference was an incredible weekend of palpable excitement in terms of learning the most up-to-date real information about managing diabetes but also the emotional outpouring was not anticipated or expected. Something I have never experienced in my personal or professional life.”

This is saying a lot, since Steve has been living with type 1 diabetes for almost 50 years.

Tricia Santos Cavaiola, MD and co-director of the TCOYD Type 1 Track, highlighted the differences between ONE and the other TCOYD conferences.  “The biggest difference with this conference was putting more emphasis on living life well with type 1 which is why we tried to make it a retreat in addition to the typical education component. Looking back on this weekend, my favorite part was just seeing how happy everyone was, from walking around the health fair, to huge turnouts at the group activity/exercise sessions, to laughing at the talks, to watching EVERY SINGLE PERSON walking around with a smile on their face. TCOYD conferences always leave me with a ‘feel-good’ feeling at the end, but this one topped them all.

Jeremy Pettus, MD (co-director of the TCOYD Type 1 Track), echoed Steve and Tricia, adding, “I think I’m just proud to have been a part in making it all happen!”

The TCOYD ONE conference that took place last weekend in San Diego, CA was nothing short of amazing.  PWD hanging out, learning from one another, and sharing their diabetes lives without hesitation or judgment is the kind of connection that benefits people’s emotional health as well as their blood sugar numbers.

Nothing leans into “good health” quite like “good friends.”

Ann Ryan Donahue, 46 years into her life with type 1 diabetes, said, “It was clear that this was a dynamic group of T1’s who have all learned to make something positive out of something negative … a room full of progressive, motivated, positive individuals with T1 … and what a great forum to share all the ‘tricks of the trade.’ This may rate as the ‘hungriest group begging for information’ that I’ve ever been a part of.”

I’ll second that completely.  In addition to giving a talk about my 30 plus years with type 1 diabetes, I lead two discussions about the mental/emotional health surrounding the issue of diabetes-related complications.  The stories that were shared in that room can’t be summed up in a blog post or a paragraph.  People were honest, and raw, about what they were dealing with or what they were fearing, and the connections in that room were instant and intense.  I could not be prouder of our community for coming together and talking about where their hopes and fears are rooted.  This is what it’s about for me; connecting with others in efforts to live big, and live well, diabetes be damned.

“It felt so great to be with so many people who understand and know how challenging life is with this condition,” said Julie Forsgren, living with type 1 for over 40 years.  And this was a theme among the attendees, the peer-to-peer connection between PWD.  “I loved how even the doctors and expert speakers were also type 1. It felt SO good to be among others who really get it! The food was a delicious bonus, too. It was so exciting to hear about the developments in improved technology from the CEO’s of the companies working on them. It was an inspiring and informative weekend full of impressive speakers. Such a great feeling of comfort and understanding being among my peers!

“When I looked up in yoga and realized that everyone in that space, at that moment was present with peaceful intentions AND diabetes, it absolutely took my breath away,” said Cynthia Celt, T1D for 20 years, about being part of the yoga group in the morning.  “It was one of the most awestruck diabetes moments I’ve ever experienced. There was no worry of a CGM alarming or the disapproving glances that sometimes accompany a yogi toting her phone into class. It was the first time I have ever felt 100% part of ‘the group’ rather than an outlier.”

Rachel Mercurio hadn’t ever met a person with type 1 diabetes “in the wild” before. “Words cannot adequately describe how incredible this weekend was for me. Before this conference, I didn’t know a soul who had T1 ‘in real life.’ Of course I knew other T1s were out there, but I have always felt like I was alone on an island. Hearing the CGM and pump beeps throughout the weekend was so comforting to hear. Warm, lovely people came up to me and introduced themselves to me. For the first time in my life, I was talking about diabetes without educating anyone about this disease, because you all get it. The presenters are true advocates. I knew this was going to be a great weekend, but I didn’t quite expect an impact of this magnitude.”  (And for the record, I had the honor of meeting Rachel and she’s a force.  And her neon yellow hair is awesome.)

It was called ONE but not because you’re the only one.  You’re ONE of many, and you are not alONE.

Thanks to the TCOYD for hosting this event, to Tandem Diabetes Care for sponsoring my keynote and breakout sessions, and to every person living with diabetes who came to find support, camaraderie, and the other ONEs like them.  See you at the next ONE!!

Blood Sugar Turbulence.

“The captain has the seatbelt sign on.  Please stay in your seats until the seatbelt sign is turned off.  This is for your safety.”

The flight attendants were also in their seats, having suspended drink service.

Turbulence sucks, but it passes quickly … usually.  Unfortunately, on this flight it seemed like it was going to be a 20 – 30 minute wigglefest for the plane.  And also unfortunately, we were at 38,000 feet and my blood sugars appeared to be making the same climb.

I’ve noticed, especially since my pregnancy last year, that I need to change my infusion set at the three day mark, or my absorption goes full crumb (climbing blood sugars, sticky highs).  I was traveling home from the TCOYD ONE conference in San Diego (awesome event –  more on that conference tomorrow) and my “it’s been three days – change your site!” alarm went off the day before.  I was on borrowed time, infusion-set wise.

I meant to change it at the airport but time was too tight.  And I had no intentions of changing it at my airplane seat, but my blood sugars were high, seemingly stuck there, and I needed to swap out that site ASAP.  Who know how long the air was going to be rough, and I could already see that my blood sugars were in garbage mode. So, tucked against the window and using my scarf as a barrier between me and my seatmates, I was able to quietly change out my site.

Covert site change on the plane. #insulincognito #latergram

A post shared by Kerri Sparling (@sixuntilme) on

And yes, the beeps are usually loud an intrusive but the speaker for the X2 is on the backside of the pump – that series of little holes – so keeping my hand firmly over that part made for a subtle set change.  Shrugged my shoulder out of my shirt and popped the infusion set on the back of my arm and I was good to go without even a side-eyed glance from my seat mates.

Stealth set changes at 38,000 feet without going into the nasty little airplane bathroom? And blood sugars that started coming down within 20 minutes of the set change? Check and check. See ya, blood sugar turbulence.

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