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Posts from the ‘Relationships’ Category

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.

The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

SUM Related posts:

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.


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.

Looking Back: Postcards from Eddie.

This morning, I thought about Eddie.  Eddie was the kid who I shared the hospital room with back when I was diagnosed with diabetes in 1986.  He popped into my head after I woke up, jet-lagged and confused from traveling yesterday, and watched a spider scuttle across the ceiling of this apartment.

Eddie had been bitten by a spider; I had been bitten by my immune system, after a fashion.

*   *   *

Sometimes the only concrete proof that diabetes hasn’t been with me forever are the cards my classmates sent.  Made from Manila paper, the kind found in abundance in elementary school, the kids in my class used their Dixon Ticonderoga No. 2 pencils and a fistful of crayons to let me know they were thinking about me.

“Dear Kerri, I heard you were sick.  We cleaned out our desks yesterday.  You left your lunch here.  The pear was all rotten.  Hope you feel better soon.  – Mike.”  This card was illustrated in pencil, showing a skeleton picking up a spoiled bag lunch from the garbage can.

“Dear Kerri, Get well soon!  Love, Megan.”  A rainbow of three colors, – pink, blue, and purple – sprawled across the sky, represented by one line.  A tree with two apples hanging enormously from its branches stood exactly the same height as the building labeled “Hospitoll”.

These cards are safely packed away, somewhere at my dad’s house, with the pee alarm and the old blue comfort pillow that I used to clutch while I sucked my thumb.  My mother always claimed that she’d give me these things before my wedding day, a promise she followed through on when my husband and I married in 2008.

Even if I never see them again, I remember the cards.  I remember snippets of those years like they were postcards from someone else’s life.

A picture of the carousel near my childhood home brings back memories of black raspberry ice creams, riding my bike into the village with that Jack of hearts card stuck in the rear tire, and collecting the perfect, miniature shells that washed up on the shoreline after the hurricanes made their tour.  No memories of a finger stick or an injection.  But I do remember that, if I rode my bike all the way to the beach, I could have ice cream without taking a shot.

I don’t remember everything about my diagnosis.  They spoke mostly to my parents.  My dad paced the room and looked out the window.  My mom sat at the table with the endocrinologist, listening and taking notes.  Books on long and short acting insulin, a proposed diet, and a chart to log my blood sugars slid across the table.

I wasn’t paying too much attention to these attempts at education.  The 13 year old boy who shared my hospital room had been bitten by a poisonous spider and was hooked up to an IV drip bag that I found much more interesting.  The bite mark was an angry pink and the boy said it itched tremendously.  He and his IV pole and me with my Kitty sat in the children’s ward and watched television.  He introduced himself as Eddie.  I told him my name, too.

“What are you in for?”  He raked his fingers down the side of his ankle, where the bite waged war on his immune system.

“I have diabetes.”

“Oh.  I’ve got a spider bite.”

“Wow.  Can I see it?”

“Sure.”  He rolled up his pant leg and exposed the sore.  “Where’s yours?”

“I don’t have any marks on me,” I responded.  We watched TV while our parents talked to doctors.

In a box in my attic today, I found a postcard from Eddie.  We corresponded as pen pals for for several years.  I remember writing to him about cats and going to the beach, ice cream and bike rides, but never diabetes.


A Matter of Apologies.

“I was low.  I was frustrated because of the low blood sugar.  I’m sorry.”

“It’s okay,” and I can tell she means it by the look in her friendly, brown eyes.

I used to be very terrible at saying, “I’m sorry.”  I would hold on to frustration and anger in a way that was not good for me or anyone around me, making a grudge or the need to feel like I “won” the disagreement take precedence over a relationship.  I’d keep “I’m sorry” under my tongue because I didn’t want to admit that I’d done something that hurt someone’s feelings.  I felt embarrassed to admit my shortcomings.  It felt awkward and bad.

It took a long time for my head to figure out that my heart was better off if I let the sorry fly, but once I came to that realization, I tried to embrace as often as I could.  (I also had to work on the “does this interaction make me better or worse as a person?”  This is still a work in progress.)  Now I’m less terrible at saying, “I’m sorry,” and I feel better for it.

As much as I hate to admit it, my blood sugars are not only influenced by my emotions (stress, anyone?) but they influence my emotions, as well.  The way my numbers make me physically feel can cause me to act like a total crumb.  It’s another reason to be aware of what my blood sugars are, and if I enter the Crumb Zone, apologize for it.

I find myself apologizing to my daughter at times for entirely blood sugar related reasons.  Sometimes I snap because I’m taking yet another bolus to correct yet another high and my body is riddled with sugar and rage, and I will be far less than patient with my little one as a result.  Other times I raise my voice because I’m trying to treat a low blood sugar reaction and she’s at my elbow asking to [insert rogue request from active 5 year old here].  Losing my patience during the course of run-of-the-mill parenting is something I am not proud of, but losing my patience because diabetes is leaning on my parenting style is something I want my kid to understand as best she can, because I don’t want her ever thinking my seemingly random outbursts are tied to her in any way.

It’s a weird balance between feeling like I’m blaming diabetes for my actions and simply explaining my actions.  Am I in the Crumb Zone (or Mayor of Crumb City, if you’re nasty) because of diabetes?  Nope.  Diabetes doesn’t get credit or get blamed.  But sometimes this disease is part of the explanation, and I want my family to have a sense for how, and why, I’m wired a certain way.

There are moments when Birdy assumes my attitude problem is diabetes-rYes, this whole post was an excuse to use the Siah-in-a-banana picture again.elated when it’s not, and I’m forced to fess up.

“Are you in a bad mood because of a low blood sugar?” my daughter asks, pointedly.

“Not at the moment.  Right now, I’m in a bad mood because I just realized I left a banana in the car while I was on my trip last week.  And now I’m afraid to open the door and confront the banana stink.”

“It’s okay,” she says.  And then adds, “Ew.”



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