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Posts tagged ‘dblogweek’

Diabetes Blog Week: The Quiet Parts.

Feels weird, and slightly ironic, starting a blog post about the diabetes-related things I don’t share here on the diabetes blog I’ve written here on the open Internet about my personal experiences with the disease.  It’s been ten years of this – the idea that there’s crap I don’t talk about might seem like a big fat lie.

But there are plenty of things I have decided not to share, both in the realm of diabetes and in the regular flow of insulin-free life.  I’m an oddly private person, considering what I do professionally.  So what do I share, and what do I choose not to share, and why?

“You put it out there, so you’re inviting people to judge you.”
That’s true.  By putting our lives “out there,” we are giving people information to judge us, for better or for worse. Giving the specifics of my lab work results or my weight or my fasting blood sugar this morning provides people with a window into my health reality.  It lets people put me into a statistic, or a range, or an assumption.  Some people are comfortable with allowing that kind of access.  I have come to realize that I’m not that kind of person.  No, I won’t tell you my A1C, even if it’s stellar and in-range and covered in fucking glitter.  I work very hard to manage this disease, and I’ve come to realize that I’m not the kind of person who does well being judged for that specific number, especially when that judgment attempts to minimize my efforts.

Because (being totally honest), I cared very much about the critique for a few years.  There was a time when I posted about my A1C while preparing for pregnancy (it was higher than what my doctor’s recommended, and I was writing about my struggle in bringing it down to baby range), and the comments that came back about my number ranged in their tone and sentiment.  Invited, warranted, or not, I can handle critical commentary, but there is a fine line between “constructive criticism” and “cruelty.”  And once I stopped getting all twitchy about the unsupportive commentary (because it’s not all going to be supportive), I felt a lot better.  Getting older has made me care less about being judged and more comfortable and confident about my decisions, decisions like not sharing my personal lab data.  Or like decisions to write about diabetes online in the first place.

“Just because you give them a window doesn’t mean you have to give them a door.”
We are not obligated to share.  We chose to share.  I write this website, and will continue to write here, because of the connection to the diabetes community that sharing fosters.  I love that part of it.  It took me a long time to realize where my boundaries are, and to feel comfortable staying within them.

While I chronicled my pregnancy in a very detailed way, I didn’t share everything.  Before my daughter was even born, I decided to keep her name offline, and after sharing some of her baby stories, I decided to keep her offline, too.  And I share a lot of the silly things related to diabetes, and some of the complicated things, too, but there are thoughts I have about diabetes that are sometimes so terrifying and other times so fucking arrogant that I keep those in, too.  Diabetes is so personal and runs a pile of gamuts.  Sharing it all feels like too much, at times.  Sharing some, however, helps me deal with the emotional side of this chronic illness.

A window in our lives?  That sounds nice.  Opening the door and letting in everything, and everyone?  I can’t manage that kind of flow.  What if a bat flies into my living room?  Fuck bats.  So I’m sticking with the windows, with the screens firmly in place.

“So what kinds of stories will we never hear you tell?  And why won’t you tell them?”
I don’t share stories about my extended family without their permission.  I don’t post about where I live or where I work during the day.  I absolutely do not write about arguments with family.  I do not share things that make me sad while I’m going through them (but sometimes I will share once I’m on the other side of that kind of emotional upheaval, as is my comfort level).  This kind of paints life as though it is “perfect” and without struggle, but I think we all know that the stuff we read on the Internet is always written with specific bias and through a specific lens. (Though I do try to disclose my financial biases, and also, I will always like my kid more than I like your kid.  It’s a fact.  Unless you are my husband, in which case I like your kid as much as I like my kid, for obvious reasons.)

I won’t tell some of these stories because they sometimes hurt to go through, never mind the added pain of retelling them.  I won’t tell them because they are mine, and privacy is an often-underrated but essential part of a peaceful life.

What I will share are stories about how diabetes affects my life, and how it plays a part in shaping my experiences.  I will connect with others through these stories and those friendships will color my existence in a way that I am still understanding and always appreciating.  I will share in hopes that someone will feel less alone, just like I feel less alone every time I read a new blogger or find a new Twitter DOC connection or have an awkward interaction with someone in a bathroom.

Regardless of how much or how little you share, your voice is important, and our community flourishes as a result.

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This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)”

Diabetes Blog Week: I Can.

Decades ago, my body did whatever it did to reroute the purpose of my pancreas, and left me with a diagnosis of type 1 diabetes at the age of seven.

As a result, I can’t make insulin.

Diabetes was presented as a series of “You can’ts” to me, back in 1986.  You can’t eat that, you can’t do that, you can’t try that, you can’t be that.  It was an unsettling feeling, being a child and living by a series of perceived restrictions.  But not knowing any differently, I spent way too much time thinking that there were things I just could not do instead of recognizing and celebrating how capable my body remained.

It wasn’t that I didn’t make insulin.

It’s that I had to coax out the instinct to live beyond diabetes.

I had to relearn how to trust myself, which was a weird paradigm shift because I was used to not trusting my body.  (When your immune system unexpectedly turns on you, you might develop a trust issue or two.)  It’s a learning curve, even to this day.  I trust my body to run for miles and hold my daughter in one arm, grocery bags in the other, but there are hiccups thrown out by diabetes here and there.  Like last night, when my low alarm went off for an hour and a half because my blood sugar was cemented in the 50’s for that long and I had to put reason and restraint into practice by treating the low cautiously instead of devouring the contents of the fridge with reckless abandon.  I had to trust the food and trust myself to bring my blood sugar up enough but not too much, aiming for that balance without caving to frustration.

I don’t know how to achieve balance, but I do know how to remain in pursuit of it.  I’m still learning.  I’m always learning.  Diabetes is not a hole in me or the whole of me.  It’s a thing that requires thinging, and I’ll thing the hell out of it until my last breath.

But not at the cost of giving in to it.

I need to remember that I can do this.  I can conquer this.  I can design this and devour this and delight in this.

I can.  I fucking can.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)”

Click for the I Can – Monday 5/11 Link List.

A Look at Diabetes Blog Week, With Karen!

Karen Graffeo is a talented knitter, devoted cat owner, and tireless advocate for diabetes, and I am so proud to call her a friend.  Six years ago, she launched the first Diabetes Blog Week, an effort that serves to expand the diabetes online community and embrace the beauty of diversity of voices.  Today, Karen is sharing some of the how’s and the why’s of Diabetes Blog Week here on SUM.

Kerri:  Congratulations on the sixth annual Diabetes Blog Week!!  For those who aren’t familiar with what it’s all about, can you shed some light?

Karen:  Thank you, I’m so excited to be doing this a sixth time!  Diabetes Blog Week was inspired by a similar event in the knitting blog community.  There is a set topic each day of the week, and participating bloggers write about that topic on their blog.  There is a list set up for each day and bloggers add the link to their post once they’ve published it.  Then we can all hop around the DOC blogosphere and read the different perspectives on each topic.  And, in the process, we can find some new blogs to read and make some new connections.

Kerri:  Is it tough to come up with topics every year?  Where do you draw your inspiration from?

Karen:  It does get tougher each year to think up fresh and enticing topics.  Every year has seven topics (one for each day) and two “wildcards” that bloggers can use if a certain day’s topic doesn’t inspire them.  So that’s nine topics a year, and we’re in the sixth year – yikes!!  However, in the past few years I’ve been asking bloggers to submit topic ideas and that has been a huge help and inspiration.  And since Diabetes Blog Week is for the community, putting out a call for topics seemed like a great way to get the community even more involved in DblogWeek.

Kerri:  What is your favorite part of Diabetes Blog Week?

Karen:  My favorite part is definitely all of the excitement and enthusiasm the DOC shows.  I remember back in 2010 when I held the first Diabetes Blog Week I wasn’t even sure anyone would sign up.  So I’ve always been very thankful for all of the support over the years and I’m so happy bloggers still are willing to join in.

Kerri:  What is the hardest part of Diabetes Blog Week?

Karen:  That first year, Diabetes Blog Week had 142 participants.  Although it was no small task, I was able to read and comment on almost every post written.  As of last year we had more than 200 participants and it gets harder to leave as many comments as I’d like.  It’s a good problem to have, but I definitely feel disappointed that I can’t find the time to comment on every single Diabetes Blog Week post.

Kerri:   And how can people participate this year? 

Karen:  I have put all of the information (I hope!!) and a sign up form in this year’s Diabetes Blog Week post.  Also, the topics have been posted here so bloggers can check them out and start thinking about what they want to write.  And if anyone has a question I haven’t addressed they can email me at DblogWeek@bittersweetdiabetes.com.

To sign up for Diabetes Blog Week, click on that snazzy little button there (designed by the endlessly talented Mike Lawson) and fill out the quick and easy form!  Diabetes Blog Week is an amazing way to become reacquainted with diabetes blogs you’ve been reading for years and to discover new voices to add to your support team.  Have fun!  Make friends.  Write bunches.

Thank you, Karen, for bringing us all together for a sixth year.  🙂

 

D-Blog Week: Mantras and More.

Mantras and sayings aren’t really my thing, but if I had to tie my boat to one tagline, diabetes-wise, it would be this one:

But most things like this give me a Pinterest rash, because it all seems to sound like:

When I need an emotional lift, I turn to my friends, family, and DOC (which is an amalgam of friends & family) for the “boost.”  Or, when no one’s looking, I watch this on repeat.

D-Blog Week: Change One Life, Change the World.

My reasons for sharing my story of a life with type 1 diabetes were few, but definitive:  I felt alone.  I wanted to feel less alone, because the whole “feeling alone” thing was wrecking some havoc on my emotional health.  I didn’t have many peers, in my life, who were living with diabetes, and the Internet offered very little in terms of support back in 2005.  At best, I could befriend the stock photography images of “people with diabetes” and at worst, I found little comfort in the list of reasons why life would be complicated, and compromised, found in my Google search returns.  After almost twenty years of life with diabetes, I really needed a community to make me feel whole.

Diabetes can create as many mental hurdles as it does physical ones, which is why diabetes and emotional health is my “itch.”  Peer-to-peer support is one of the most crucial elements in my diabetes self-care arsenal.  I did diabetes for about a decade without access to people who understood the minutiae of it all and I didn’t realize the void that existed until it was filled.  Connecting with those first kindred spirits – Scott, Violet, and Tek, in particular – cracked my world open and showed me that I was going to be okay and in the moments when I wasn’t as okay, I wouldn’t go it alone.

As I’ve written before, you can have access to all the best doctors and all the best technology but it’s all shit unless you’re in the right head space to make proper use of it.  Insulin that remains unbolused is useless.  Dexcom receivers don’t do any good shoved in a drawer.  The accuracy of glucose meters doesn’t matter if you don’t ever check your blood sugar.

The best laid plans of (NOD?) mice and men often go awry if you won’t engage in the self-care necessary for pursuing, and maintaining, good health.

So what’s my advocacy itch?  Hell, I’ve written about this for nine years – advocating for peer-to-peer support for people with diabetes.  Fostering community.  Being part of something that makes the isolation and fear of diabetes succumb to the possibility, and to the hope.

It’s as big as the Spare a Rose campaign and as small as a phone call with a newly-diagnosed friend who needs support.

Will this kind of advocacy change the world?  Perhaps not.  But it’s not about changing the whole world.  It’s not about page views or stat counts or any of that bullshitIt’s about being there for one another and taking care of one another.  Losing sight of that means losing so much of what makes our community truly awesome (like ‘100 billion hot dogs‘ kind of awesome).  Being part of a global movement to raise awareness for diabetes has been life-changing, and life-saving, for me, and I know for many others.  Even if we don’t see the direct influence of our collective community in clear and quantifiable ways, know that it is changing lives.

And that, in turn, changes the world.

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It’s Diabetes Blog Week, and this entry is for the “Change the World” topic.  For more on Diabetes Blog Week, including participants and topics, click on the respective links.  It’s not too late to join in the fun – jump in now!

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