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Posts from the ‘Diabetes Community’ Category

Diabetes Blog Week: Tips and Tricks.

Tips and Tricks:  Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

(And for more on the topics of Diabetes Blog Week 2016, click here.)

Let’s jump right in and say that every suggestion I have is borderline dangerous.  Why?  Because I am someone without a medical degree writing about my personal diabetes best practices on the Internet.  That said, anything you read here that’s considered a “tip” or a “trick” is not something you should try without talking to your doctor.  Because I am not a doctor, nor am I your doctor.  And this morning I let the coffee pot run without a coffee cup underneath the spout thing.  Consider your source(s).

That also said, I have close to thirty years of experience with type 1 diabetes, so there is more than a shred of validity to my scope of experience.  If something resonates, party on.  But don’t take any of this stuff as medical advice.  Please.  For the love of god.

KERRI STOP WITH THE CAVEATING OKAY FINE.

Tips and tricks.  Here’s a bulleted list of weird shit I do to make diabetes less intrusive and more malleable:

  • I put Toughpads underneath my Dexcom sensors to keep my allergic reaction to the adhesive at bay.  This works reasonably well – the blistering welts have stopped, but long-standing patches of scaly, raised skin remain for weeks, if not months, at a time.
  • Re: the scaly skin bit, I sprayed anti-fungal spray on the most irritated patch of skin this morning.  Mostly out of frustration, but also because I read somewhere that it might help.  If it does anything useful for healing my skin, I will share that information.  For now, please don’t judge me because I off-labeled the shit out of athlete’s foot spray.
  • Out of pockets?  Wear your insulin pump in your bra (but beware those pesky disco boobs).
  • YOU GUYS THIS t:slim CLIP IS THE BEST.
  • During all three pregnancies (and most notably the two that made it past the first trimester), I downloaded my diabetes devices and examined the data.  This is cumbersome and annoying and one of my least favorite diabetes to-do tasks but it HELPS.  Citing it as a trick or treat tip feels goofy because I should be doing this anyway, but I usually don’t.  And now I do.  And it helps.
  • I charge my devices when I shower.  And since I am a hygeine-freak, I shower very regularly.  I charge my t:slim every three days or so (usually not letting the percentage of charge fall below 50%), and my Dexcom receiver (using the G4, per my doctor’s preference, until I deliver the baby) once or twice a week.  I charge my Verio Sync meter once a week, at best.  A full battery is exciting to me.  Which illustrates how much I need to leave my house today.
  • I keep a charger thing in my car.  And Tandem provides a snazzy one with their pump, which I keep in my glove compartment.  (Hey, disclosure.)  Seems like overkill when you don’t need it, but when you do need a power boost, it’s beyond handy.
  • I also keep a few slips of Opsite Flexifix tape in my wallet.  Has been busted out as necessary on dozens of occasions.
  • And while they are most noted for keeping cans of beer … safe?, I guess? … I have an insulin bottle rubber sleeve to protect the vials.  Has kept more than a few bottles safe from the bathroom tile.

Do you feel tipsy now?  All full of tricksies?  There you go.

Diabetes Blog Week: Language and Diabetes.

Language and Diabetes:  There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

(And for more on the topics of Diabetes Blog Week 2016, click here.)

Language matters.  The words we use matter.

Some words make me all fired up, like “consumer.”  I am a consumer when it comes to cars, or coats, or snow blowers.  When it comes to diabetes, I’m not a consumer.  I would never choose to consume these goods; they are chosen out of the desire to stay alive.  I don’t like “suffering from diabetes” because it makes me feel weak and compromised, which stands in contrast to where I prefer to anchor my emotions about diabetes.  And I totally hate the concept of “good” and “bad” blood sugars.  That whole ideology can fuck off in favor of “in range” and “out of range.”

I appreciate the word “complications” because its connotation is perfect for how I feel about diabetes-related complications; that shit is complicated.  I like the word “empowered” because it reminds me that I have a say in how this whole life maps out, diabetes or not.  I like any words and phrases that tie the physical aspects of diabetes to the emotional ones.  I latch on actively to “hope” versus fear.  And I like being called “Kerri” instead of “diabetic,” but hey, that’s just me.

(And I really like certain curse words, but I am trying to use those less, but it’s difficult.  I don’t make insulin, I do make use of curse words.  It’s a terrible habit, but one I am not changing.)

But it’s not about the words we shouldn’t use, or the ones that seem potentially loaded.  This morning, after hearing about the death of a fellow advocate (outside of the diabetes space), I’m spinning with thoughts of the words I wish I used more, the things I wish I said.  The things I should say.

Like “thanks for sharing this.”  I think this every time I read a blog post, or a Tweet, or a Facebook update from someone and it makes me stop and think.  The DOC is filled with voices that challenge what I thought I knew, and who teach me how to re-examine my chronic illness with grace and determination or perspective or humility … or all of it.  I like the way they think.  I like what they say.

And “How are you feeling today?”  I interact with a lot of people touched by illness – patients, consumers, caregivers … whatever word words for you in this way – and their stories touch me.  A lot of the time, I absorb what they’re saying and store it away in my head, but I want to reach out more, ask “how are you feeling today?”  I want the people in our community, and outside of it, to know how much I appreciate what it takes to share their stories, even when they are worn out by doing it, by living it.  A little ask goes a long way.

Or “You aren’t alone; how can I help?”  Because sometimes people share to get things off their chest (“I hate low blood sugars!”), but other times they reach out in hopes of someone reaching back (“I feel so alone with diabetes.”)  Words matter, and hearing, “You aren’t alone; how can I help?” might make a difference.

And “I’m sorry.”  Because I am.

But mostly “thank you” and sometimes, “I love you.”  Over the last few years, there have been people who have come and gone from my life that left lasting impressions, and I bet I didn’t tell them “thank you” and “I love you” nearly as much as I should have.  I know I thought it – thought it a lot after they were gone – but I should have said it then.  When they were here.  When they could hear me and understand the influence they’ve had on my life, the positive mark they’ve left on my existence, and the ways they’ve rocked my world for the better.

Words matter.  Stories matter.  People matter.  So thank you.  And even though you’re reading these words on a glowing screen and we’re communicating mostly through a digital medium, you are part of a community that has forever changed me.

 

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:

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.

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