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Guest Post: What FFL Was Like as a First Timer.

Wondering what it’s like to be surrounded by thousands of people affected by diabetes?  Today, my fellow Friends for Life faculty member and longtime family friend, Scott Johnson, takes over SUM to share his experience as a first-timer at FFL back in 2010.  

Scott was diagnosed with type 1 diabetes back in 1980 and has been blogging about his experiences since 2004 over at Scott’s Diabetes Blog.  Today, he’s an integral (and huggable) part of the diabetes online community, working tirelessly as an advocate and also as the US communications lead for mySugr.

(And if you’re looking to connect in person with like-pancreased people, you can register for Friends for Life here.  Or, if July in Orlando is not your thing, there’s another conference in Falls Church, VA that might hit the mark for you.)

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As soon as I arrived at the hotel, I started noticing people with diabetes stuff around the hotel. A Dexcom sensor or OmniPod pump on their arm. Maybe a diabetes-related t-shirt. A used test strip. I was gawking at everyone! Rubbernecking my way from place to place as I walked around the hotel. It’s so uncommon to see people like me out in the world, but at Friends for Life, it’s the norm, which is a very powerful experience.

And when it comes to powerful experiences, Friends for Life has plenty to offer. One of my favorite moments was walking into the big breakfast room for the first time. By dumb luck, I picked a corner door and walked inside. That moment stopped me in my tracks.

I was stunned by how massive the room was. I couldn’t see everyone because it was too big. The other side of the room felt lost to the curving horizon line of the earth. And it hit me, suddenly, that everyone there was there for me. Well, not me, exactly, but “me” as in type 1 diabetes. I’d never seen so many people together specifically for type 1 diabetes before I’m my life – and I’ll never forget feeling so amazed, so grateful, and so ready to drink it all in. It tugged on some heartstrings I hadn’t known were there. I’d found a family I didn’t know I was missing.

Friends at Friends for Life

photo credit: Jeff Hitchcock

The whole conference was extremely emotional for me. Seeing little ones with diabetes knowing they’ll grow up with a better experience than me thanks to Friends for Life made me so hopeful and happy for them. But knowing they’ll know the shitty sides of diabetes too made me want to hug them and cry.

Some sessions were presentation style with slides, others were small group sessions offering a safe place to vent about tough topics with others in similar situations. There were different tracks to choose from, depending on interest, relationship to diabetes, age group, and more. I bounced around from session to session and was impressed by all of them. Jeff, Laura and the FFL team pull together an impressive roster of faculty members and volunteers to make magic happen. It was the first time in my life where I could listen to a famous doctor or scientist that I’d only read about give a presentation one hour, then find myself visiting with them later that day somewhere else in the conference. It felt surreal in so many amazing ways.

And then there’s simply sitting with a group of PWDs for hours and commiserating about some situation that we’ve all dealt with or just laughing the night away and talking about everything but diabetes.

It’s hard to describe the level of understanding present at Friends for Life. I remember listening to Rick Philbin give a talk about insulin pumps and exercise, and as he’s up at the podium he described the subconscious urge to check his pockets for glucose tabs every time he programmed a correction bolus out of fear for going low down the line. I was like, “whoa… he can see inside my soul..” but I’d never been able to articulate that subtle fear! And then there’s the story of getting to play basketball with Rick and Gary Scheiner – an awesome experience – until they got into a “discussion” about the score. That’s a day I’ll never forget!

And stay tuned for another guest post all about eyes …

I have to acknowledge Roche Diabetes Care’s huge roll in my first Friends for Life experience. They invited me to the second Roche Social Media Summit and hosted the event at the same location as the Friends for Life conference. This reduced some of my out of pocket expense (airfare) which made it possible for me to attend. That small logistical favor changed my life in so many ways. I’m forever grateful.

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Thanks, Scott.  See you in a few weeks!

Bright Spots & Landmines: An Interview with Adam Brown

Adam Brown has written a new – TERRIFIC – book for the diabetes community, full of the same brilliant, actionable advice that we’ve come to happily expect from his diaTribe columns.  His book, Bright Spots & Landmines, is billed as “the diabetes guide I wish someone had handed me,” and that sentiment is absolutely correct.  This book is a powerful tool that people living with diabetes can pour through and make their own, with moments of reflection and inspiration interspersed among research, recipes, and amazing graphic design.  
Bright Spots & Landmines by Adam Brown
Kerri: What inspired you to write Bright Spots & Landmines?

Adam:  When I started writing my diaTribe column (Adam’s Corner) four years ago, I never would have guessed that more than half a million people would read it! I’ve received hundreds of emails and comments sharing gratitude and kindness, which is what motivated me to do something loftier with Bright Spots & Landmines. Each Adam’s Corner column stands alone, so I wanted this book to be a single guide that distills all the most helpful diabetes tips I’ve learned in four areas: food, mindset, exercise, and sleep.

Kerri: What makes Bright Spots & Landmines different from what’s already out there? 

Adam:  I agonized over this question before writing this book – I wanted to make sure Bright Spots & Landmines would add value!

From the beginning, I had two major goals with this project: (i) write an extremely actionable book that anyone with diabetes can use to improve some aspect of his/her life immediately; and (ii) give it away at as low of a price as possible! Based on the early reviews and the free/name-your-own-price PDF download, I’m so excited about the outcomes. A few other things come to mind:

Bright Spots & Landmines is written from a person-with-diabetes perspective and based on more than 10,000 hours writing professionally about diabetes, over 50,000 hours of personal learning from CGM, and everything I’ve taken away from hundreds of diabetes conferences and leading thinkers.

The book focuses on food, mindset, exercise, and sleep, which are not often addressed in the same actionable diabetes guide.

Bright Spots & Landmines went through an extensive feedback process, with a combined 500+ years of diabetes experience between all the reviewers – yourself included!

Last (and perhaps most important), my girlfriend, Priscilla Leung, did all the wonderful illustrations and graphics in the book – these really make the writing come to life. I’m as proud of how it looks as I am of the words!

Kerri: How do you want readers to feel after reading your book?

Adam:  Uplifted, positive, and ready to try some new things and experiment! I hope people leave Bright Spots & Landmines with tangible actions and nuggets they can use to improve their life with diabetes – whether it’s a recipe I eat, a quote I like, or an answer to question that the book poses to them.

I hope this book also reminds readers that we all have moments of enormous diabetes frustration, self-sabotaging food decisions, negative thoughts and questions, busy days where exercise is hard to fit in, and nights without enough sleep. Bright Spots & Landmines shares my toolkit for navigating the choppy, unpredictable waters of living with diabetes. I hope it puts some wind in readers’ sails.

Adam Brown, author of Bright Spots & Landmines

Kerri: Is Bright Spots & Landmines made up of rules for living well with diabetes, or are these suggestions for people to implement in their own lives?

Adam:  Awesome question! This is a book filled with things that have made an enormous difference in my life with diabetes. By sharing them, I hope readers will glean tips they can try or adapt to fit their needs.

For instance, chia pudding is one that has been fascinating to follow. Some readers make it exactly like I do and love it! Others have tinkered with the recipe to fit their needs. And for others, it’s not a fit. I expect this variance with all 43 Bright Spots and 16 Landmines in the book – some will resonate, some will need to be adapted, and some won’t apply. This is why each chapter – food, mindset, exercise, and sleep – concludes with Bright Spots & Landmines questions so readers can identify what works for them.

Kerri: Is this a book you would want to give newly diagnosed PWD? Long-timers? Caregivers? Is there something for each group in this book?

Adam:  All of the above – and I don’t say that lightly. Every one of these groups read drafts of the book. A mom of a newly diagnosed son read Bright Spots & Landmines, as did a woman with over 50 years living with diabetes. Other readers fell in between (see testimonials and Amazon reviews). I even had some people with prediabetes read the book and find it useful!

Kerri: What was your favorite part to write?

Adam:  I love the Mindset chapter most of all, even though it comes second in the book. (Of course, Food had to be first in a diabetes book.) The right Mindset is like rocket fuel for living better with diabetes – it underlies everything and can provide such a boost, even on the toughest days. This chapter shares lots of tips and tricks related to perfectionism, motivation, stress, goal setting, hacking my brain and habits, and beyond. I’m a voracious readers of psychology and self-help, which is probably why I had so much to say in this chapter.

Kerri: What was the most challenging portion of this book for you to tackle?

Adam:  I struggled a lot with the title. We went through many iterations, including “Diabetes Bright Spots & Landmines” (too long), “Solving Diabetes” (a bit too presumptuous), and the original (read: not great) title, “Make Diabetes Awesome.” Probably the worst title in the original brainstorm was, “Diabetes should be less awful and more awesome.” Haha! I’m so happy about the final title:subtitle combination, since it really illustrates the book’s framework and why I wrote it in the first place.

I also spent an enormous amount of time trying to figure out how to make the book as low cost as possible, but still look amazing. I originally wanted full color interior printing, but this made the book twice as expensive in paperback. I wasn’t willing to accept that tradeoff. I love the current model of a name-your-own price PDF download in full color, a paperback on Amazon for under $7 (the black-and-white interior still looks really good), and a Kindle version for $1.99.

Funnily enough, the writing process was the easiest part, though getting feedback on the book was always scary. It’s never easy to show your work to other people.

Kerri: What’s next, now that the book is live?

Adam:  For now, I’m laser focused on finding every possible avenue to get this book into people’s hands – whether that’s print copies or free digital versions.  And we will certainly do follow-up Adam’s Corner articles that talk about different pieces of the book.I’d also love to do an audio version, video snippets of different Bright Spots & Landmines, weekly Facebook Live Q&As with readers, and perhaps translation into other languages. But whew… one thing at a time! If you have any ideas you’d like to see, please let me know at brightspots@diaTribe.org!

Kerri: And how can people find more of your writing?

Adam:  Adam’s Corner is here on diaTribe.org, diaTribe’s Facebook page is here, and diaTribe’s twitter is here (@diaTribenews), and my twitter is here (@asbrown1).

Kerri:  Thanks so much for chatting, Adam.  Also, you adopted a dog? Awesome!  What kind?

Adam:  A mini schnauzer mix! I talk about him in the introduction and the exercise chapter 😃 A dog is an incredible Mindset and Exercise Bright Spot, all in one package! I’m a huge convert, despite my skepticism when Priscilla wanted to adopt. Definitely one of the best life decisions we’ve made in the past year.

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Thank you , Adam, for taking the time to talk and also for creating such a powerful resource for the diabetes community.  (And I have a soft spot for Adam because he has never yelled at me, despite my occasionally being spotty back in the day on getting my diaTribe columns to him on time.  To that same end, look for a reboot of the SUM Musings column over at diaTribe in the coming weeks!)  

Adam is patient, ridiculously well-informed, and when it comes to bright spots in the diabetes community, don’t look directly at Adam or you may burn your eyes.  Congratulations again on the book launch!!!  

The Baby Stuff Post.

Let’s make a list of baby stuff that I’d recommend, because I think it’s a useful post to do.

“WHAAAAAT??? No, this is a diabetes blog!”

Sorry.  I have some baby gear recommendations that I want to have as part of the archive, in part to pass along to other moms (with or without diabetes) and in part because I like going back and seeing what kind of resources I used with Birdzone and comparing those against what I have access to with the little Guy.

But this might be semi-useful if you are expecting a little one.  And if you aren’t, check back tomorrow when I’ll be talking with Adam Brown about his new book.

Car seat:  We went with the Chicco KeyFit 30 for both Birdy and the little Guy.  Safety ratings were high, the car seat base was easy to install, and being able to purchase multiple bases for multiple cars made it a good fit (both times) for our traveling family.  It’s a heavy car seat, even without a kid in it, which was tricky when I was recovering from c-sections, but I’d like to think my biceps thanked me for the extra output.  Unfortunately, because our kids are 6 years apart in age, we had to rebuy the car seat stuff completely.  No saving for years there.

Stroller:  We used to have the stroller that went with the KeyFit car seat (back in 2010 – this is one being sold on eBay and even this one is too recent) and we hung on to this stroller set forEVER waiting for baby no. 2.  Once the little Guy arrived, we hosed off the ancient stroller and used it until Guy was about 6 months old.  If I had to rebuy a stroller, I’d go with the one that fits the car seat because it’s very convenient to move a sleeping baby from car to stroller without going bananas.  Recently, we bought a BabyTrend jogging stroller for off-roading (bike path, neighborhood walks, big sister’s softball games).  So far, so good.  And no, I haven’t been jogging with it.  I’m too clumsy and awkward and would end up in a ditch.

High chair:  Hello again, hoarder Sparlings.  We saved Birdy’s high chair and busted that thing out again after her brother was born.  Back in 2010, we went with the Chicco Polly high chair (and you can buy one on eBay if you’re feeling nostalgic and/or you too would like to find 7 year old puffs in your high chair base).  Pros are that the buckles are strong and the base is secure.  Cons are that this takes up a lot of room in our kitchen.  If we get a new one, it will be a strappy-to-the-chair type.

Crib:  The crib our little Guy is sleeping in now is also Birdy’s hand-me-down one, which was so old and had moved house twice that we lost the original hardware set and had to scour the internet for screws to fit our model.  (Thanks, O.)  But when we first brought home our son, he slept in our room for seven months in a Graco pack and play.  Birdy had an identical set up back in the day.  This worked best for me both times because I was breastfeeding and could keep the crib right near our bed.

Breast pump:  I’m listing this under essential because I needed to pump in order to accomplish my goal of being able to travel for work while still breastfeeding my children.  With Birdy, I had a Medela Swing pump.  It worked great.  This time around, I had a Medela Freestyle.  It worked less great for me; I’m unsure if that was because I was more stressed/dealing with postpartum issues and wasn’t producing as easily as with Birdy or because of my age this time, so I relied almost exclusively on the Harmony breast pump.  I could use it on planes, in the car, at home … it made pumping a quick and pretty easy process.

The little storage bags were terrific for pumping while on planes because they traveled/stayed cold very easily.  And while I was pumping, I used a bag I received at the hospital (another blogger wrote about it here).  It was from Similac, but it came with a cold pack and was the perfect size for me to fill with the Harmony handheld pump, some storage bags, and the cold pack.  I dragged this bag around the country with me for the first six months, pumping in conference hotel rooms and airplanes.

Bottles:  With Birdy, we used plastic bottles from Medela.  This time around, we’re using mostly Avent glass bottles.  And as the little Guy needed bigger bottles, we’ve retired the 4 oz bottles as cups to let spider plant and English ivy seedlings grow roots in because I’m a plant nerd and cannot bear to throw useful things out see also: the baby crap we kept for six years

Baby food:  Now that Guy is chomping down on real food, I’m constantly making baby snacks.  I broke down and purchased a baby food maker (this one from Beaba) and some glass storage jars.  I thought I would regret the baby food maker purchase, but it was the best indulgence ever because I can make a few day’s worth of food very easily.  This afternoon, in about 30 minutes, I was able to prepare green beans, applesauce, mango, broccoli, cauliflower, and strawberries without ruining ANY of it.  As someone who cannot cook, this is a remarkable feat and the food processor thing is to blame for my success.

Odds and ends:  Sleep sacks are my FAVORITE because I believe in keeping blankets, etc out of my kids’ sleeping situation until they are about a year old.  Sleep sacks kept both kids warm without making me paranoid.  I also purchased a Boppy pillow both times and it definitely made breastfeeding after c-sections more comfortable.  Oh, and the frigging wubbanubs basically saved our lives.  My son doesn’t need a pacifier to fall asleep, but it’s very convenient to have one attached to a little stuffed animal for the moments when he’s wheeling around in his crib in search of a pacifier.  Wubbanubs are useful.  And adorable.

And that’s kind of it.  The rest of the stuff is totally not essential but completely fun.  Like onesies with suspenders on them.  And all the poop.  (Had to end that on a semi mommybloggy note.  Which I promise never to do again.)

DBlogWeek 2017: More Than Diabetes.

Diabetes Blog Week prompt for Friday:  Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)

It’s been quite a week, with a pretty wide emotional range and I’m kind of DONE with diabetes.  But none of that crap today.  Today it’s about the stuff that’s not diabetes-related. It’s all the other stuff.

Since it’s late and I’m typing this out to close out my day, I’ll keep it listish because that’s easier.

  • I love lists.  I love making them and crossing shit off them and writing them out all neatly and will not keep lists in a digital medium but instead on an index card from the stack we keep in our kitchen junk drawer.  Lists are nice.  I rarely finish things that I’ve listed, but still … the listing part is nice.  Takes a crack at organizing my thoughts.
  • I’m not organized, though.  Not even a little bit.  I have grand plans to get all my thoughts lined up but they roam around unsupervised all the time and I struggle to complete my to do lists because they grow like those dinosaur eggs you put in a glass.
  • Group texts are my arch nemesis/favorite past time.  I have a tendency to wander off pretty far from the initial topic and almost always include a rotten typo (because I use voice-to-text all the time and today almost sent a message that included the phrase “turd farm” instead of the intended “turf farm.”  Different visual entirely.)  Apologies specifically to the women in my neighborhood, who are patient with my wandering narratives.
  • Suddenly, Blood Mary’s are my favorite drink.  My father is a fan of the Bloody Mary and I always thought his drink choice was horrible, the choice of a vegetarian vampire.  The red tomato juice, the horseradish, the celery stalk … blech.  Until it suddenly wasn’t blech and and I wanted one.  And now I have become the vegetarian vampire.
  • I constantly crave music.  Bands like Elbow and Radiohead, singers like Alexander Wolfe and Damien Rice, Muse, Bat for Lashes, alt-j, Arctic Monkeys, Stateless, Fleet Foxes, Jay-Z, Rage Against the Machine, Cake, Halfmoon Run … all of it.  Any of it.  I love loud music and have it on throughout the day.  I can’t write without it.  I can’t run without it.  I want to crawl around in your Spotify playlists.  Sharing music recommendations and new favorite songs are among my favorite things to do.
  • I appreciate where I live.  I love my state (#rhodypride) and the town we live in.  I love the beaches and the bike paths and the parks.  I love our neighborhood – we hit the jackpot with the folks we live near.  I love raising my children in a community that believes in community.  I’m a big fan of this little state.
  • I can’t dance.  I used to tap dance (for 15 years) and I was pretty good, but any other kind of dance becomes a desperate please for my legs and arms to stop embarrassing me.
  • But oh how I can make the yarn dance.  (That was a goofy segue.  Even for me.)  I’ve been crocheting since I was 13 years old, a student of my beloved grammie’s, and have taken on her craft as my own.  Currently, baby blankets are my jam as so many lovely friends are expanding their families, and my own two kiddos are covered in yarny cocoons.  I really like combing the internet for crochet patterns and I love everything that Amy Ermel posts.
  • I miss reading books.  I used to read constantly.  Having kids and writing so much has eaten up a lot of reading time, unfortunately.  I’ve had a Jodi Picoult book 3/4 read for the better part of four months and I haven’t made the time to FINISH IT.  But I just decided to finish it this weekend.  Added it to my analog list.
  • I take at least a dozen pictures a day.  Of frogs found in the front yard.  Of my son, while he sleeps in my arms.  Of my daughter building a fort underneath the dining room table.  Of the cat when she’s standing at the end of a long hallway and scratching “RED RUM” into the hardwood floors.  I’m snappity-snap all the time and most of them won’t ever leave my camera roll but I look at all of them when I’m on planes.
  • Fantasy lunch table?  Roald Dahl, Thom Yorke, and me.  And my grandmother, so I could introduce her to my daughter and my son and show her how much of her stubbornness and kindness and silly tendencies are in my children.  Also, I’d love to hear what she’d think of Thom Yorke.  (“Why was he so fidgety?  Does he need a hug?”)

I have loved reading all the More than Diabetes posts, because they help round the DOC out.  We’re more than our numbers.  And more than our disease.  We might be a bit Thom Yorke-ish, potentially in need of a hug.

 

DBlogWeek 2017: The Cost of Chronic Illness.

Diabetes Blog Week prompt for Tuesday:  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

Aaaaaaarrgggghhhhhh this post has me writing and erasing sentences left and right.  I’m not even sure where to start.  This whole topic frustrates me.  Best to jump right in:

I remember, when I was small and under my parents’ care, my parents had to battle with their insurance company to cover more than four blood glucose test strips per day for me.  Since becoming an adult, I’ve had good insurance where my deductible was $300, out of pocket max was $500, and all of my supplies were covered at 100% so long as I was “in network.”  I’ve had crappy insurance where my deductible was $5000, no out of pocket max, and my pump supplies were covered 80/20.  (Those two years were the most I’ve ever spent on care in my life.) I’ve never been without insurance because I was raised fearing a lapse in coverage.  When I graduated college, I had a job that started three days later so that I wouldn’t have a coverage gap.  I remember when Chris and I were first married, we struggled to find an insurance policy to cover the two of us in a way that we could afford while also providing decent coverage for my persistent medical needs.

Living without insurance coverage was always presented as a “DO NOT,” but as the years have gone on and greed, corruption, and the breakdown of the healthcare (wealthcare) system became dominant over caring for patients, I’ve seen how being insured can still break your finances apart.  Families struggle to make medical ends meet and oftentimes can’t, making awful decisions – if you can even call them that – between paying rent and buying medication.

I am not a conspiracy theorist.  But what the fuck, Pharma … why are you always raising prices on essential drugs?  Because you know we’re trapped?  Why did insulin cost like $45 per bottle when I was diagnosed but is now upwards of $280?  I can only understand so much R&D because after a while, it starts to read like GREED.

Reading articles like these give me such rage (with a side of panic):

Insulin price hikes tell us a lot about what’s wrong with drug pricing in America

Eli Lilly Raises Insulin Prices While ‘Supporting’ People With Diabetes

On Lilly’s unconscionable insulin price increase

Doubt what they say. Believe what they do.

Eli Lilly raised prices on 9 drugs last week

Patients Beg For Pricey Drugs On Facebook Black Market

And I see a dozen different advocacy groups working towards the same goals – improving access for people with diabetes – but they aren’t always working together, which is infuriating to watch.  (Also, Melissa Lee wrote a great note on Facebook about the word “access” – read here.)  I do not know the behind-the-scenes details of which org is talking to who and what funds what and who has opinions on what sort of things, mostly because I’ve been out of the loop for the better part of a year (something about an infant invading my home), but looking at the community from 10,000 feet, there are a lot of dots.  And they could use some connecting.  And to be totally honest, I have no idea how that will happen.

Check out these orgs/efforts/opportunities and see if anything leaps out at you.

Check out the T1International Diabetes Access Advocacy Toolkit

Join the Access Alliance

Join the Diabetes Patient Advocacy Coalition

Download the Diabetes Patient Advocacy Coalition app

Take action with the American Diabetes Organization

Support JDRF advocacy campaigns

Explore Beyond Type 1’s Focus on Access

International Diabetes Federation’s Advocacy resources

The 5Calls.org website is always awesome for policy action (not just healthcare)

Because here’s the thing:  our community is divided by a dozen different things but we are UNITED by our common circumstance:  diabetes.  By uniting and raising our voices with compassion and conviction, we can make the difference and become the change our community deserves.  The cost of chronic illness is staggering, but the price of staying silent will make matters worse.

… and how great is Diabetes Blog Week, serving as the opportunity you may have been waiting for to get loud.

 

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