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Posts tagged ‘type 1 diabetes’

Twenty-Eight and Thirteen.

Twenty-eight years ago, I was diagnosed with type 1 diabetes. It’s a moment in time that is so jumbled up with other things – my grandfather had been in a horrible car accident a few months prior to my diagnosis, my older cousin died in a car accident just after my diagnosis – there are memories of people in my family crying and there were so many reasons.  Vague memories of being in Rhode Island Hospital for two weeks, the kid with the spider bite, and practicing injections on an orange serve as markers on the timeline of my diagnosis, but clear memories don’t exist.

Diabetes has always been there.  It doesn’t get easier with time, but it does become more routine and less mentally intrusive.  Either that, or I’ve just become used to the intrusion.

I remember September 11, 2001 very clearly.  I was working in a bank in Newport, RI right near the naval base.  It was my first job after college, and the first plane hit the WTC as I was driving over the Newport Bridge to work.  My coworkers told me about the first plane when I arrived at the bank.  The security guard at the bank told us when the second plane hit.  I remember calling my father because I didn’t know what else to do, and he told me it was going to be okay.  His voice was calm.  Despite his inability to actually influence the events that were unfolding across the country, his words were reassuring and made me feel safe.

I feel very lucky that I didn’t experience personal loss on that day.  My heart goes out to those who did.

The nation is in mourning and I mourn with my country.  Simultaneously, I mark the anniversary of my diabetes diagnosis. I always think about people whose birthdays are on September 11th, or whose wedding anniversaries are September 11th.  I think about the people who lost so much on September 11, 2001. It’s a day where I feel conflicted thinking about diabetes, but it’s impossible not to apply personal bias to life.

I think it’s a day to close the damn computer.  To not read every news article and overwhelmingly sad bit of news being shared.  It feels like a day to be present, to remember to live.

 

So Many Things!

A Friday Six on a Wednesday!  Because why the hell not.

The FitBit obsession.

Renza talks about the messaging of diabetes, and what we can do to get it right.

Here is some damn sneaky research.

Seb is still running. And I’m still supporting the hell out of him, because he’s incredibly dedicated. You can still support him, too.

I am having the hardest time not filling our home with everything Murray, by way of Derek Eads.

“It’s a day to remember those who were lost. For me it’s a reminder that I’m lucky to be alive.”  Amazing post from Carly about a medical emergency on 9/11.

Are you in the Los Angeles area?  Diabetes Sisters is coming to LA on October 24th, and I’ll be part of the event, alongside some of my favorite DOC people (Hi Cherise, Manny, and George!).  Hope to see you there!

That same weekend, up in Anaheim, CA, the Children With Diabetes team will be holding a Focus on Technology conference.  There will be a whole session on setting up your CGM in the Cloud rig – don’t miss it!

Coming Together as a Community – a great piece from diaTribe’s editor-in-chief Kelly Close.

There is no such thing as a “free food.”  Sort of.  New column at Animas.

“today, i felt parts of the monster within myself.  today, i felt parts of the hero within myself.”  Excellent post from Heather Gabel about the activated patient.

THE SEA OF TREES found its way into People Magazine last week.

And these – THESE VIDEOS ARE AMAZING.  Melissa, you are the Weird Al of the DOC.  :)

An In-Depth Look at the Diabetes UnConference.

Peer to peer support has been shown to be highly beneficial to those living with diabetes. The report, “Peer Support in Health – Evidence to Action,” summarizing findings from the first National Peer Support Collaborative Learning Network shared that: “Among 20 studies of diabetes management, 19 showed statistically significant evidence of benefits of peer support.”  In keeping with that theme, The Diabetes UnConference, the first peer-to-peer support conference for all adults with diabetes, is on tap for March 2015.

Founded by Christel Marchand Aprigliano, The Diabetes UnConference is facilitated by volunteers well known to the diabetes community: Bennet Dunlap, Heather Gabel, Manny Hernandez, Scott K. Johnson, George Simmons, Dr. Nicole Berelos, PhD, MPH, CDE and Kerri Sparling [me ... can you tell this part was a bit of a cut-and-paste from the "about" page on the UnConference website?  Yes ma'am.]  These diabetes community leaders are familiar with the topics that will be covered; each live with diabetes.

The Diabetes UnConference will be held at the Flamingo Las Vegas from March 12 – 15, 2015, and today, I’m talking with founder Christel Aprigliano about the when, how, and most importantly the why of this ground-breaking event.

Kerri:  I know you.  And think you’re awesome.  For those who haven’t met you yet, who are you, and what’s your connection to diabetes?

Christel:  I was diagnosed with type 1 diabetes at the age of Six Until Me times two. (That would be twelve years old, if you have problems with math like I do.)  I didn’t know many other Type 1s growing up and spent a lot of my teens and early 20s ignoring the physical and psychological issues of having this disease. I had a great medical team that stuck with me and helped me to learn how to live with it, not fight against it.

In August of 2005, I complained to my then boyfriend (now husband) that there weren’t any weekly podcasts about diabetes. Next thing I knew, we had started diabeticfeed, talking about diabetes research news and interviewing people doing amazing things with diabetes. (This interview was in January, 2006 with a woman named Kerri Morrone. We talked about Jettas and diabetes.)

I joke about being a part of the DOC before it was the DOC. While we stopped producing diabeticfeed, I’m doing other things: writing at ThePerfectD, working with other advocates on cool projects like StripSafely and CGMSafely and founding The Diabetes UnConference. While I’m not thrilled to have diabetes, some of my most favorite people in the universe came from connecting with others because of it.

Kerri:  There are a lot of conferences that center around diabetes.  Why the UnConference? 

Christel:  I’ve been to a lot of diabetes conferences and some of the best experiences I’ve had are not in the research sessions or keynote presentations; it’s hallway moments when I’m connecting with another Type 1 or sitting around a lunch table sharing stories and tips. I would leave these conferences wishing that I had more time to talk about the emotional aspects of having this disease and how to live well with it.

During a brainstorming session at the Medtronic Advocacy Summit in January, a question was asked: “What could you do this year in the diabetes community to make a difference?” And the next thing I know, I’m saying that I wanted to have a conference that would bring adults with diabetes together to talk about living with diabetes and learning from each other  – an “unconference.”  (Unconference is a concept made popular by the tech community, where the agenda is decided by the participants during the first hour of the conference. No keynotes, no research sessions, just talking and sharing in a safe environment where there’s no judgement.)

What also makes The Diabetes UnConference unique is that it will bring type 1 and type 2 adults together in one room for a multi-day conference. No other conference does that. We all have non-functioning pancreases (only varying by degree), we have many of the same long-term complications, we all have to deal with depression and burnout and stigma, and we all want to live well with diabetes. We can learn from each other in a safe environment.

Kerri:  What was the scariest thing about taking the leap to put this conference together?  What was the most empowering?

Christel:  The scariest thing has been the idea that I’d be sitting in a huge meeting room in Las Vegas by myself, eating several thousands of dollars worth of food by myself to fulfill the contract that I signed with The Flamingo. I don’t have enough insulin to bolus for it all! (Thankfully, everyone I’ve spoken with about The Diabetes UnConference has been excited about it.)

Really it’s the idea that there people out there who need and want to talk with other people with diabetes and don’t know that this exists. It’s always that way with something new and innovative, isn’t it? We also have scholarships available for those who do want to come but may not have the financial resources to attend.

The most empowering? Knowing that it’s the community that is making this happen. I may have had the initial idea, but without amazing facilitators and participants who want to create this unforgettable experience is mind-blowing. This is about a community helping each other, learning from each other, and connecting with each other. This community empowers me to believe that we can do so much when we listen to each other.

Kerri:  Why should people attend the conference?

Christel:  We spent a few hours each year talking with our healthcare team, mostly about lab results and medication adjustments or treatment recommendations. The rest of the year, we’re on our own. We don’t have time to talk with them about our feelings surrounding living day-to-day with diabetes.

Our community is amazing. We can talk about the emotional aspects of living with diabetes online, but nothing can take the place of looking into each other’s eyes when you talk about fears and burnout. It’s rare to find someone willing to talk about diabetes sexual dysfunction in public, but by creating a safe environment where others might have the same issue and may have a solution? You may not feel comfortable talking about job discrimination online, but in person? I want people to have a safe place where they can express their feelings and get support and hopefully options…

Plus, when the diabetes community gets together, we build these incredible friendships and have an insane amount of fun. Laughter is always in ample supply.

I don’t want people to feel alone with their diabetes. I felt alone for years. That’s why people should attend.

Kerri:  How can people register? 

Christel:  Go to www.DiabetesUnConference.com to register and learn more about the conference. (It’s March 13 – 15, 2015 and being held at The Flamingo Las Vegas. We got great rates for the hotel, too!)

Our scholarship applications are open until September 30, 2014.

We’ve got some wonderful surprises up our sleeve, thanks to our sponsors. Insulet, Dexcom, Roche, and B-D have committed to helping make this conference happen, and I’m so grateful. (That being said, any company who is interested in helping can contact us and be a part of this.)

Kerri:  Thanks, Christel.  And for those reading, the scholarship applications are open until September 30th, so if you’d like to apply, please click over and send in your applicationHope to see you all in March in Las Vegas!!

Free Foods!

…  “You can have pickles?  Or gelatin?  Or cucumber slices!”

My mom tried to make these options sound appealing and delicious, but when I was a kid and my blood sugar was super high, pickles weren’t what I craved.  My body wanted to chug water and cheeseburgers simultaneously in efforts to cleanse the ketones and sate the high hunger.

“Can I have something else?”

“Not right now.  Those are the free foods you can have, until your blood sugar comes down.” she’d reply.

The phrase ‘free foods’ was a real one, twenty years ago in our household.”

more about free foods at Animas.

Changing the Set.

Changing out an insulin pump infusion set is a methodical moment for me. I do things in the same order almost every time, with the same mildly frenetic mindset.

  • Remove old set from my body so I can enjoy the “connected to nothing” feeling for as long as possible.
  • Take out a new infusion set and new reservoir.
  • Ferret out the open bottle of insulin from wherever I’ve stashed it last in the bathroom.  (Usually it’s in the medicine cabinet, but during the hotter months of summer, I tend to keep it in our bedroom, where it’s cooler.)
  • Line the insulin set, reservoir, and bottle up on the counter.
  • Unscrew the reservoir cap and remove the old infusion set and reservoir from the pump.  Throw the tangle of tubing into the garbage, making sure said tangle doesn’t dangle over the edge of the garbage can because otherwise Loopy and Siah will find it and drag it all over the house.
  • Open the packaging for the reservoir and take out all the little parts (except that one frigging thing that I don’t know what it’s for and I usually throw it right into the garbage – see below):

  • Rewind the pump.
  • This is the point where I mentally set some kind of timer, challenging myself to race against the time it takes for the pump to rewind.  While the pump is whirring, I rush to fill up the reservoir and connect it to the tubing.  I do this every, single time.  It’s as satisfyingly ritualistic as shaking the bottle of test strips before I check my blood sugar.
  • Thread the tubing through the battery cap and connect the luer lock, then insert the cartridge into the pump.
  • Load the new cartridge.
  • Prime the cartridge, trying to stop the prime before more than a single drop of insulin escapes from the needle in the infusion set.
  • Hold the tubing up to the light and inspect it for bubbles.
  • After the pump is primed, again the mental timer is set.  This time, the challenge is to unpeel the sticky backing from the infusion set and find a place on my body that’s suitable for insertion before the screen on my pump goes blank from inactivity.
  • Insert the new infusion set, prime the cannula (sort of holding my breath while it primes because I’m never certain that the first introduction of insulin won’t burn under my skin).
  • Tuck the tubing out of sight and clip the pump to my clothes.
  • Fin.  (As in “the end.”  There’s no marine life actively involved in this process.)

This process takes less than two minutes to complete, but if it’s interrupted in any way, I’m thrown so far off course that it takes me five minutes to recover.  The method of this madness is that it’s one, fluid mental movement and any upset to the process makes my brain disengage to seek the comfort of something shiny.

It’s an intricate process involving several steps, precision handling, and the safe housing a powerful drug.  And if I have to change the battery at the same time …

 

Diabetes Relics: Accu-Chek II.

Whose pockets were what size now?

[here's a link to a full size photo]

Scanned from the pages of the Fall 1986 issue of “Diabetes Forecast: The newsletter for people who live with diabetes,” this was my first glucose meter.

Next week marks 28 years with type 1 diabetes for me, and looking back at the technology I used upon diagnosis, I see how far things have come.  I wonder if I’ll look back, decades from now, and marvel at the cumbersome technology of 2014.

Maybe I’ll be all making my own insulin and tending to a big, fat glass of Reisling and not giving a shit because research will have finally caught up with hope.

Pre-Bolusing for Snacks.

“Do you pre-bolus for your meals?”

“I do.”  (I was happy to answer this question because I actually do pre-bolus.  Pre-bolusing is my A1C’s saving grace.)

“Okay, that’s great.”  She made a few notes in my chart.  “How about for snacks?  Do you pre-bolus for those?”

“I … um, nope.  I am horrible at pre-bolusing for snacks.”

Unfortunately, hat is completely and utterly true.

Meals are easier to pre-bolus for because there’s time involved in making them.  If I know I’m cooking chicken and green beans for dinner, I have 25 – 30 minutes to let that bolus sink in before the meal is even ready.  Going out to eat at restaurants is easy, too, because I usually have an idea of what I’d like to eat, so I’ll bolus for the meal once we are seated at the table.  (Pre-bolusing backfires at times, too, but as long as I’m not in the middle of the woods, I’ll take the risk.)  A meal feels like an event, and therefore easier to accommodate.

Snacks feel like an accident.  An unplanned moment.  I don’t take an apple out of the basket and bite into it in a premeditated fashion, but more like a fluid movement without any thought involved.  (A run-by fruiting by any other name …)  It’s not until I’m done with a snack – apple, yogurt, nuts, protein bar … cupcake? – that I realize I haven’t taken any insulin to cover the carbs.  My post-snackial blood sugars aren’t grateful for the misstep.

This would not be a big deal if I wasn’t such a grazer, but when 50% of my caloric intake throughout the day is on a whim, pre-bolusing for snacks matters.  My A1C is currently in my range (under 7%) but I know if I can remember even half the time to pre-bolus for snacks, I bet my standard deviation will tighten up and blah blah blah other numbers as well.

Little, conscious changes will hopefully become habit.

 

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