dbw day 4 - what if

Today's prompt: Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?

I asked the kid if she could think of anything for this prompt and she said 'yeah, just not right now', so maybe down the line we'll have a guest post from her addressing this topic. In the meantime, you're stuck with me. So.

What if there was a way for newly diagnosed families to find other people that have been where they are, to help them start their journey on the right foot.

What if there was a place to go in case of a middle of the night diabetes debacle to find a bit of advice or even just a "me too, hang in there pal" to help you get through.

How about a way for teens to meet other teens, so they could share parental horror stories and offer support to one another.

Imagine if there was somewhere to go if you needed to laugh at the ridiculousness of life with diabetes.
 
What if someone inspired a whole bunch of people to share their unique viewpoints on a variety of topics, to offer the opportunity to make more connections.

And what if there was a time and place that gave you a chance to meet up with some of the people who have made your road a little easier to travel.

That would be so frickin' rad.

dbw day 3 - room for improvement

Today's prompt is: We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

Nothing. I'm perfect. The end.


...


...


...


Are you kidding me? I mean, have you SEEN the name of my blog? HELLO!

But seriously folks, let's talk about basal testing. We've never done it. Why? Well. Because our doctors have never asked us to. And because it seems super complicated and annoying. I mean, check this out:

Image Credit: Gary Scheiner / diaTribe

What the what. I mean, I understand that you're not meant to do all 4 types of basal testing in one 24 hour period, but still. Even taken in 12 hour chunks, it still seems like a huge pain in the gluteus maximus. And fingertips! So, what say you DOC? Got any tips or tricks to make it more manageable? Remember, we're talking about a 12 year old who loves to get her snack on. Anyone? Frye?

dbw day 2 - one great thing

Today's prompt is: Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well! 

So, my kid has this thing called "post-exercise delayed hypoglycemia", which is just a complicated way of saying her shit drops low overnight after a day of a lot of activity. It took us a while to figure this out. We expected her BG to drop during (and in the hours immediately after) exercising, but we didn't realize it could extend several hours after the fact, which typically means overnight. Awesome.

Once we realized this was an issue, we backed way off on how much insulin we gave her in the hours after a lot of exercise (soccer game, marathon trampoline session, etc). But that nearly always meant super high BGs overnight. Maneuvering her post-activity insulin needs is much more nuanced than we realized but recently, L has become a total diabadass at it.


She's been playing soccer since she was 4 years old and the first question she asked the doctors in the hospital after diagnosis was "will I still be able to play soccer?". A week and a half later she was back at practice, while I sat on the sidelines clutching an insulin pen and skittles to my chest like a life preserver. Here we are two and a half years later, and she has become so skilled at managing her BGs after intense exercise that she makes all her own food/insulin decisions now, with much greater success than John and I ever had. 

I've asked her how she is able to nail it almost every time, like is there some sort of mathematical equation I can utilize to help me figure it out? But no, there are too many variables, some of which come from just being in tune with her own body and just having a couple of years of experience under her belt, I guess.The best word I can think of to describe it is finesse. Finesse: skill in handing a difficult or highly sensitive situation; adroit and artful management.
  

My kid: nailing her post-exercise delayed hypoglycemia with finesse.

diabetes blog week - day 1: find a friend

Big ups to Karen at Bitter~Sweet for starting Diabetes Blog Week 3 years ago. This is my second year participating, and I'm looking forward to all y'alls posts. Let's get started.

Today's prompt is: Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!!  Let’s all find a new friend today!

ONLY ONE? Unpossible. Here are my faves, in the order they appear in my Google Reader:

+ Carey at dLife
At my house, we call him "The Dude Carey" so as not to confuse him with the other Kerri. He weaves entertaining tales of his family's life with diabetes, mostly featuring his 9 yo son Charlie (dx 2003).  He's funny as hell and has great taste in music. If you dig darkly comic stories with a gooey soft center, Carey's yer man.

+ Joanne at Death of a Pancreas
You guys know that animated video illustrating what NOT to say to parents of kids with diabetes? I LITERALLY quote the part about poison + cookies every time someone asks if my kid can eat that. Joanne was inspired to create that video a year and a half ago and since then I've seen it pop up all over the DOC, from #dsma chats to blog comments and Facebook statuses. Check out her blog for her special brand of Canadian sarcasm and pics of her beautiful kids, including her 4.5 yo daughter Elise (dx 2008).

+ Jules at muffinmoon
I usually find myself smiling while reading a post from Jules, which invariably features stories about her 6 yo son Frank (dx 2008), with special appearances by knitting, cooking, seaside caravan trips, photography projects, and basically all things charming and British. Each post is like a snapshot of her peaceful and creative life and one more than one occasion I've thought: I want to go to there.

+ Meri at Our Diabetic Life
The odds are slim to none that someone visiting my blog wouldn't already be a faithful reader of Meri's as well. But just in case...she and her husband are raising four sons, three of whom have type 1 diabetes. They meet life's challenges with humor, faith and the support of their community, and I have personally benefited from Meri's generosity of time and spirit. Oh yeah, and they also have an awesome diabetes alert dog. How cool is that?

+ Lorraine at This is Caleb
Lorraine's blog does a great job of balancing posts about her family's experience with diabetes from her perspective, as well as first-person accounts from her 8 yo son Caleb (dx 2007). She's also posted a lot of infotaining videos featuring Caleb over the years that really helped my family during the first few months after L's diagnosis.

+ Reyna at Beta Buddies
Reyna's got a knack for storytelling that is difficult to describe. Her inimitable voice comes through loud and clear in all of her posts, whether she's talking about her 9 yo son Joe (dx 2006), or the other members of her family. She's a tremendous advocate in her day-to-day life and if there was an award for Best Mascara, she would win it every time.

+ Amy at wait for it
I never know what I'm gonna get when I see a new post from Amy. Will it be a story about her boxing training? Will she be describing a personal experience about the transformative power of theatre? Perhaps she'll be sharing photos of one of the many creepy crawly critters she welcomes into her home.  Or it might be something about her family, including her 8 yo son Theo (dx 2010). Whatever the topic, her posts always leave me with something to think about.

+ Amy at Type 1 Today
Music-lovin' d-mom who has a knack for tying the perfect song into whatever experience she and her family, including her 14 yo son Matt (dx 2009), are going through. And if you know me, you know how important music is to my daily life, so it's easy to see why I'm down with her blog.

+ Steve at Without Envy
You guys, Steve is like, a published author and shit. That means he makes words real good. His 10 yo daughter Lia was diagnosed just a few months after my own daughter (2009), so reading about how he and his family are dealing with things along a similar timeline to my own family's has been unexpectedly comforting. Also, homeboy knows his way around a turn of phrase. Srsly.

+ Kristin at Luke's D Day
Kristin has been in the D biz for almost exactly the same amount of time as me, and she was the first person to ever comment on my blog. She's spent the last couple of years doing some serious advocating for her 3 yo son Luke (dx 2009). She blogs about her efforts to raise awareness and encourage positive legislation in her home state of Washington, as well as the DC version. She also posts awesome vacation pics of her family, featuring her very sassy hairdo.

+ Zakary at Raising Colorado
11 yo daughter Zoe (dx 2010), squirrels, photographs, asians, colorado, swearing, hijinx, hilarity

+ Katy at Bigfoot Child Have Diabetes
A couple of weeks ago, Kerri posted a link to what I call The Bigfoot Blog, and I sat unmoving on my couch for the next few hours mainlining every single post, in reverse chronological order. My surprised barks of laughter echoed off the walls of my empty house, since my family was at soccer practice and thereby not in need of my attention (luckily for everyone involved). If that's not enough of an endorsement for you, how about this one: Katy refers to her 8 yo son (dx 2011) by the nickname of 'Bubs'. Because that's the name of the recovering heroin addict on the critically-acclaimed television program called 'The Wire'. ALL ON ACCOUNT OF THE NEEDLES, GET IT? Also, she created a tag for posts mentioning the 'Portlandia Food Allergy Pride Parade', so. That should tell you all you need to know to determine whether or not her blog is your cup of tea (so delicious coconut milk optional).

Have you guys noticed a common thread between all of these blogs? They're all written by parents of kids with diabetes. You might think that means I don't read any other types of blogs in the DOC. Oh contrayer moan frare (I took Spanish in school). But all the adult PWD blogs I enjoy seem so widely read, I would be surprised if you'd not already heard of them. However, I'd feel remiss if I didn't at least give them a little shoutout here at the end. So here are some more linkies to check out, just in case your RSS feed feels a little lonely: George, Ginger, Haidee, Jacquie, Jess, Kerri, Kim, Lee Ann, Martin, Mike, Sara, Scott, Scott, and Simon.

Happy Reading! :D

photo + explanation wednesday

Last night we had dinner from Noodles & Company. The kid likes it because it's delish and I like it because their carb info is easily accessible (also, delish). We ordered online and there was an option to tag each meal with a different name. The kid asked if I would use 'Luna Lovegood' for her meal, so I did. Then I added other Potteriffic names for mine and John's orders. Much to L's delight, this is what greeted us when we unpacked our dinner. She said, "THAT JUST MADE MY WEEK!" Then she snapped this photo (finger included) and promptly made it her computer's desktop background.

Sometimes it's the little things that bring so much joy. Happy Wednesday, y'all. :)

my friend jenn

I've known my friend Jenn for 17 years. We met online in 1995. Remember what being online was like in 1995? Most people were still merging onto the information superhighway in the equivalent of an AMC Pacer. That movie 'You've Got Mail' was still three years in the future and it's when 'Hackers' was released. Telling your friends and family you were going to meet someone you met on the internet made them worry for your mental health and your physical safety. Or they just asked you, What is Internet?

In 1995, Jenn and I both subscribed to a mailing list for fans of a certain band. I lived in Cali and she was in NC, so it's likely we never would have met were it not for the internet. I began publication of a fanzine for the band and she volunteered to be the East Coast correspondent. That summer, we met in person for the first time, to see the final shows of the tour. And even though our love for that band has long since faded, we are still friends, with many adventures together since that first road trip. (I just tallied all the different states we've traveled to together and it came to an astonishing - and lucky! - 13.)

Eugene, Oregon - 1995

Cleveland, Ohio - 2003

 Boston, Massachusetts - 2011

She's been there for me through pregnancy and parenthood (I left her a voicemail during my labor that she saved for years) and I was her maid matron of honor. Now she has two young sons and a busy life but when L was diagnosed, she was one of the first people I called, on my way home to grab clothes for our hospital stay. And she has been with us every step of the way since then, from asking me to explain what the hell 'basal' and 'bolus' mean, to running in a marathon last year to raise money ($2,675!!) and awareness for diabetes research.

Cincinnati, Ohio - 2001

 Chapel Hill, North Carolina - 2004

 Cincinnati, Ohio - 2011

She's coming to town in a couple of weeks to celebrate my birthday and run another (half) marathon, for which she's been training and raising money for months. Every time she posts a running update on Facebook, she includes a link to an article or video about type 1 diabetes. Sometimes I feel she's a bigger advocate for L than I am! :) 

She has already reached her fundraising goal through the generosity of her friends and family (and from as far away as Ireland, HOLLA). But did that stop her? Nooooo. She's also donating 100% of all sales in her Etsy shop this month to JDRF. So, if you're the kind of person who likes to hang pretty things on their walls like so:

 

then please visit her Etsy shop and see if anything strikes your fancy. My daughter's busted pancreas and I thank you.

 

It was an unlikely friendship at the start, but it has stood the test of time, even though we've never actually lived in the same city (or state, for that matter). We initially came together over one specific interest, but our relationship evolved well beyond what either of us could have dreamed in 1995, and now I marvel at how different things would be if she wasn't in my life. I have a feeling a lot of you guys reading this have experienced something similar. ;) Big love to all those internet friends that become invaluable friends. Especially my friend Jenn.

what happens

 
[jump to 2:22 to skip the intro]

empty handed waiting
time it will subside and we'll agree
it was a given, yeah
there was no standard we could set
and the world it does regret
to have to leave you in this state of bereavement

wordless wednesday

fuck cancer in its fucking face

when i was 18, my mom was diagnosed with cancer. when i was 20, she died.

three years ago, my friend melissa's husband died of cancer, leaving two young kids behind.

last year, my friend elysia's sister died of cancer. last year, my friend bill's mom was diagnosed with cancer (she is still fighting the good fight).

this year, my friend kiki's mom was diagnosed with cancer. and my friend claire's dad was. and a few days ago, as i'm sure all of you in the DOC know already, meri's husband ryan, from ourdiabeticlife, was diagnosed with metastasized melanoma.

if you're reading this, i either know you from the DOC, or you care enough about me to check this blog. if you're in the former category, you already know meri. but if you're in the latter, please read on.

when L was diagnosed with diabetes, i was at a bit of a loss. luckily i found the diabetes online community, which is filled with people with diabetes and parents of children with diabetes, all sharing their experiences, including both successes and failures. i actually read a beautiful analogy today that i think describes the DOC perfectly. it was written by babs in a comment on strangely scott's blog:

I have this picture in my mind of this wide dirt road, where each of us is walking, toward the same goal. Some are walking ahead of me, some behind. Some are running, others are taking their time. I see you further up the road than me, looking back and waving, "hey, try this side of the road, it's less bumpy up here!" I don't know what my health would be like today without your guidance.

Likewise, I've also learned from you, it's my responsibility to inform those behind me of the current road conditions along my path. Things change. It rains and mud and potholes arise.

We're all in this together and if we keep each other looking for the strong footing, we'll make it to the end.

that's fucking beautiful, right? and it's so true! there are so many blogs i look to for guidance because the moms and dads have been and still are going through what i am on any given day. meri's blog was one i gravitated to from the very beginning. in the early days, we watched a video of her husband ryan refilling a pump in under a minute or some shit and we couldn't ever imagine being so proficient at it. but we are now. (well, at least one of us is.) i've often emailed meri with specific concerns i have about my gonna-be-a-teenager-with-diabetes-before-i-know-it, and she has always given me support and helpful advice.

basically, it comes down to this. every blogger i follow, whether it's parents of kids with diabetes, or adults with diabetes, every single one of them has made my family's journey with diabetes easier. and if you're reading this, you've done the same (even if you don't have a connection to the diabetski besides L) just by listening and offering your support.

and because meri and her family have lightened my load along the way, i am asking you to do something for them, even though you don't know them. please join me in sending them love and light. the family has especially set aside this sunday march 4 as a day of fasting and praying for a miracle, and they have asked everyone they know to join them, if that's your kind of thing. and even if it's not, if you could just spare some positive energy and send it their way, it would be much appreciated. by them, and me. and while we're at it, let's hold all those other people i mentioned above in our thoughts. and anyone else you've ever known that's been touched by motherfucking cancer. thanks. <3

#wddpe2011

Better late than never, here's a post about the World Diabetes Day Postcard Exchange, which took place in November 2011. Created by Lee Ann Thill as a way to connect people affected by diabetes living around the world, this was an opportunity for my family to take time to share our experiences through art therapy. John, L and I were each matched with a different person, and I was so inspired I even created a few extras. You can find a gallery of many of the cards that winged their way around the world here. I've included some pics from our side of things below.

Here's a shot of all the cards my family made and sent:

L hard at work on hers:

Detail of John and L's:

And here's what we received. Click the pics to embiggen, so you can really appreciate the work that went into them. I can't believe they survived their journeys intact. I used an excessive amount of packing tape to cover the cards we sent.

I got a card with beautiful, delicate artwork from Ivy in Japan.

John got this really neat painted card from Ron in California:

And L received this great artwork from Gwyneth in California:

Thanks so much to Lee Ann for being the force behind this great creative project. It was a fun experience and I look forward to doing it again in 2012.