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Keeping it Bubbly Without Bubbling Over.

Yesterday, I was at the JDRF TypeOneNation event in Dallas (big thank you to Tandem Diabetes for sponsoring my attendance in full – more on that disclosure here), and I did two presentations.

Despite only seeing a circuit of airport/shuttle/hotel/shuttle/airport, Dallas was fun.

During my talk on “Life After Diagnosis,” a family asked about my views on diabetes, citing that I seemed to have a lot of energy.  (Little do they know that coffee is to blame.  A real one; my first in several months.  And it was lovely and made my brain go hey I still work – jump up and doooooown!)

“You seem very bubbly, and very positive about your diabetes. My daughter hears a lot about people who are very positive and upbeat about their diabetes. She is not there yet. How can we help her get there?”

That’s a loaded question, because it runs on the assumption that once you hit a moment of diabetes acceptance, you stay there. This September, I’ll mark the 30 year point with type 1 diabetes, and I’ve had more than a few run-ins with diabetes burnout, episodes of less-than-optimal, and emotional struggles with diabetes. Sometimes that’s not properly conveyed here on my website, and less-so in person, because I don’t like to write about struggling too often. It’s not a matter of being ashamed of the struggle, but more that chronicling emotional stress sometimes adds to emotional stress.

Think about it: if you’re feeling crumbs-ish about diabetes, and you make a list of reasons why you feel crumby about diabetes, now you have this list of crumbs-inducing stuff staring you in the face. A bulleted list of reasons you should feel like garbage.  That kind of reinforcement is not my jam.

For me, itemizing my grief doesn’t work. What does, at least for now, is identifying what’s bugging me and then embracing the opposite of that bug.  In the past, I’ve actively hated the process of checking my blood sugar.  Oddly enough, a new meter case was enough to trick my brain into being less frigging angry about it.  When my blood sugars were tanking after exercising and frustrations were mounting, my husband helped me focus on the benefits of the exercise itself, even if I was consuming a juice box (or four) after a specific workout.  Focusing on small victories made dealing with some of the bigger bullshit moments easier.

And sometimes I’ve just needed time to fill back up.

Diabetes “acceptance” isn’t a staircase, where you achieve a mental milestone and continue to work from that point. If anything, the emotional aspects of diabetes are more like an escalator that sometimes stalls out and becomes stairs, which then sometimes collapse entirely to become a slide backwards. I’m not sure what’s at the top, what the apex of acceptance might be for other people, but for me, I picture it as feeling comfortable taking a few steps forward at times, knowing full well I might stumble back.

The point is, there’s always something.  People aren’t always honest about what they’re struggling with, which can paint a perception of achievable diabetes perfection, which is absolutely not a thing.  I’m not sure how to advise someone to “get there,” but instead assure them that “there” looks different for everyone touched by diabetes.  Community, and connecting with others who understand on the most nuanced of levels, helps.   Diabetes is a journey.  It’s a pain in the butt.  It’s a constantly needy little thing that shouts often and loudly at times, whispers quietly and pokes me with an unraveled paper clip at others.

But at the end of the day, diabetes is ours to wrangle in, and on our worst days, the diabetes community helps us to hog-tie that shit.

(Also picturing comfortable pillows and one extremely fluffy and endearingly cross-eyed/double-pawed kitten at the top of this staircase, and maybe a giant iced coffee that I can stick my whole face into and then sprout gills to be able to breathe under coffee.  To be specific.)

Looking Back: Rules of Love.

Today, in response to spending the day fighting traffic for yet another installment of “how long will I be in the waiting room?” at the doctor’s office, I’m revisiting a post from 2012 about love, PWDs, and permission.  It still blows my mind that this book was published, and I remain appreciative of how far we’ve come.

See also:  eff off, Morris Fishbein, MD.

  *   *   *

In Austin two weeks ago, I had the opportunity to finally meet Josiah Hammer (known affectionately across the world as “The Hammer”), who works at Dexcom and is my direct point of abuse contact at Dexcom for when I screw things up.  [Editor’s note:  Hammer is no longer at Dexcom but is now over at Tandem, which is half the reason why I wanted to switch to Tandem because Hammer is majorly awesome.]

During the course of an email exchange, The Hammer sent me a page from an old health book that he found – the Modern Home Medical Adviser: Your Health and How To Preserve It (edited by Morris Fishbein, MD [who, according to many online sources that may be less-than-credible-but-still-cracked-me-up said that Fishbein was originally aiming to be a clown, but realized there was more money in medicine], published in 1942) which included a chart, of sorts, dictating who should shag whom.

Excerpts:

Only four rules. The shortest rule list a PWD has ever seen, to date. About dating. ;)

Of course.  Because all decisions of love are made with diabetes in mind.  There’s something about this chart that makes me both roll my eyes and then picture a diabetes Punnett’s Square.  Love is a tangled web as it is – plotting decisions against a diabetes graph makes things even more complicated.  Thankfully, good ol’ Morris was there to help people sort out who they should be smooching on.  (/sarcasm.)

This book also featured “blameful” and “blameless” diabetes, helping to drive home the misconception that type 2 diabetes is something people should be beaten with a stick for having and that type 1 is the result of hereditary circumstances (just like in my case, where I”m the only diabetic in my entire family, of any kind … /sarcasm once again).

The Blame Game sucks.

Sometimes I look at how diabetes is currently portrayed in books, television, and other media outlets, and I’m frustrated.  It’s a potluck of misconceptions, facts, and always colored by opinion, but it is slowly becoming more accurate, and more “real.”  People are learning about all different kinds of diabetes and the varying treatments, and the discussion about diabetes entering the mainstream is increasingly credible.  But iooking back at the so-called “medical books” from the early 1940s has blown my mind in a way that Steel Magnolias never will.

We have come a long, long way.  And I’m grateful for that.

Guest Post: Peer Support, and Mending a Broken Heart.

Anna Floreen was diagnosed with type 1 diabetes at the age of six, and she lives in the Boston area with her husband and their adorable puppy dog.  She’s currently working as the Community Outreach Manager for Glu and travels the country speaking at diabetes-related events.  A champion for diabetes camps and peer-to-peer support, Anna works tireless to build up the diabetes community.  Today, she’s sharing part of a very difficult experience that she went through a few weeks ago, involving the end of a pregnancy dream, the power of peer support, and the slow, steady process of rebuilding.

  *   *   *

Friends are great. Girlfriends are that, “What do you need / what are you craving” after a shitty break up who show up with ice cream and your favorite chick flick. But diabetes friends are speechless – not because they don’t say anything, but because they get it. I realize now more than ever, that those friends who have the “unspoken understanding” of diabetes matter the most to me, at least, right now anyway.

My husband and I lost a very much wanted baby girl five weeks ago – exactly at the half way point of my pregnancy. The loss was nothing diabetes-related whatsoever. It was an insanely rare congenital heart defect in which we did nothing to cause. (Trust me, the guilt of diabetes was most certainly number 1 on my brain cells for quite some time).  It wasn’t however, my parents or best friend that I turned to first to share my horrible, no good, very-bad day news with; it was a peer with type 1. She knew I was pregnant before my mom (Sorry mom – I was in Vancouver), and she helped guide me through every “exit explosion” of morning sickness, the crazy low blood sugars, and all the doctor’s appointments.

She was in the next room when we were given our baby’s devastating diagnosis (she’s not a stalker; we share the same OB/GYN and endocrinologist).  It seemed weird not to tell her. She waited in the parking lot after her appointment to make sure I wasn’t alone, checked in with me daily the week following my surgery. I told her, and other type 1’s about this experience first because they get it. They get what it takes to bear a pregnancy with type 1: the endless overnight beeping, juice box wrappers, and constant communication with care-team members, so of course it makes sense. We crave that feeling of belonging, we’re kindredly connected, and I kind of like that.

Weeks later, as I attempt to grasp my new reality, I’m feeling incredibly thankful to have these peers. Although I am no longer pregnant, Kerri is. And I will be that same rock and shoulder and peer to her if she needs it that she has been to me for the last whatever-the-eff months that was a pretty big blob of blur to me. I’ve learned that it takes a lot of work and homework to prepare and endure a pregnancy, but it’s a heck of a lot better when you have super awesome people to follow along with you.

Never underestimate the power of our peers … especially those with reduced pancreatic function. Sometimes we forget how grateful we are for these friendships, so go text a friend, send them a card, or take a moment to think about the positive power of a peer.

  *   *   *

Jumping in to confirm that Anna has been a tremendous support resource for me and my family as we’ve navigated infertility and pregnancy, and the ties that bind here are permanent.  I look forward to the day that our kids hang out together at the beach and compare notes.

Thanks for trusting us with this, Anna.  xo

Link Love.

My inbox was not properly maintained while my daughter was on school vacation last week (but let’s be honest – when is it ever properly maintained?), but I’m taking a crack at catching up.  I wanted to share a few bits and pieces that were interesting to me, and might be of interest to you.

First, this:

Okay.  Now links:

  • “Diabetes sometimes feels like the ultimate roller coaster: ups and downs, no idea what’s around the corner, and moments where I fear for my life. Part of that ride is an incredible emotional and mental balancing act …”  Read more from diaTribe‘s Adam Brown in his informative article, The Diabetes Emotional Rollercoaster.
  • “Maybe,” he told me, “you could do a better job of managing his diabetes at night.”  A dentist runs commentary on one mom’s diabetes experiences over at A Sweet Life.
  • Tom “Diabetes Dad” Karlya joins the Diabetes Patient Advocacy Coalition to share the success of Reegan’s Rule in North Carolina as a precedent for other states.  You can find more information for the April 28 webinar here, and you can register here.  Tune in at 12 pm eastern on April 28.
  • This weekend, out in Dallas, TX, is the TypeOneNation summit, and I’m excited to be rolling my pregnant self out there for the conference.  “The TypeOneNation Summit is JDRF’s signature educational event for people with type 1 diabetes (T1D), their families and friends.  Join other individuals, families and caregivers affected by T1D at all life stages, for a day of education, inspiration and connection.”  For more information, check out the details here.
  • Also coming up is the DREAMS in the City silent auction, benefitting the Diabetes Research Institute.  Check out this link for more information on the NYC event on May 5th.
  • The DiabetesMine Patient Voices contest is up and running again this year, and applications to receive a scholarship to attend the Innovation Summit are open for the next month, so consider applying!  More information on the summit can be found here.
  • The team at Lifescan recently shared their KnowMyCopay.com site, which aims “to help you discover which brand of test strips has the lowest co-pay.”  I wasn’t able to find my health insurance provider on the list (I wanted to know if strips other than Lifescan’s would pop up as a result, considering the source), but I’m hoping that this site can be of service to folks who are trying to figure out how to make sense of the insurance hoops they have to jump through for decent diabetes care.  In any event, I appreciate something that aims to make life easier for consumers/patients/PEOPLE.
  • And lastly, but not least(ly), I wanted to extend an invitation to folks in the Pacific Northwest to a really cool event taking place June 25 and 26th in Seattle, WA – the ConnecT1D Retreat.  I feel that the psychosocial influence of diabetes is under-served and frankly, under-valued.  We, as PWD, don’t want a frigging pity party, but there needs to be care taken of our emotional and mental well being; it’s just as important as our physical self.  Whole-person care starts with conferences like the ConnecT1D Retreat, and I encourage people touched by diabetes to consider registering.  (Besides, you can hang out the absolutely amazing Joe Solowiejczyk, and I’ll be drafting off his brilliance all weekend.)

And now we dance.

Kitchen Poetry Slam.

Revisiting an older poetry post, recorded in my kitchen with a healthy dose of a Rhode Island accent.

 

Because we are resilient, damn it.

 

 

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