#ffl12

This was my family's second year at the Friends for Life conference in Orlando. As you may recall, my kid asked us to commit to come to this year's gathering before we were even halfway through last year's. So we've just gotten back from a whirlwind week of Disney overload, diabetes education, and bonding with people we may only see once a year but are going through the same things we are 24/7/365. Bullet points? Don't mind if I do.

[This might will get long. If you'd rather just cut to the chase, then scroll down to where it says tl;dr.]

+ Spent the first couple of days at Magic Kingdom and Hollywood Studios. Diabetes dx = lifetime fast pass. I straight up told my kid I couldn't go to Disney any more if there's a cure for diabetes. It's like Seinfeld said about flying First Class: once you've experienced it, you can't go back. I can't. I won't.

+ We were standing under an umbrella near the Tower of Terror at Hollywood Studios waiting for a thunderstorm to pass when a large bolt of lightning struck the top of the Hollywood Tower Hotel. WHAT! The cast member we were with looked petrified and said to me in a small voice, "I think I need a hug." Naturally, I obliged. After that brief moment of vulnerability, he put his professional face back on and got back to work. It. was. awesome.

+ The first people I ran into at the hotel were Kim and Ginger. I was so giddy to see Kim again and to meet Ginger that I started using my Excited Voice, which is a cross between Amy Poehler's Kaitlin  and Kristin Wiig's Terget Lady, with a little bit of the ERMAHGERD meme thrown in for good measure. I spent much of the week alternating between RICK RICK RICK and CREDIT APPROVED! and ERMAHGERD BLERGERS!

+ So Kim was lovely as always but I don't think Ginger was prepared for that amount of fangirling because she just had this WOW look on her face but she was sweet and complimented my hair and said it should have its own vlog or something, I'm not really sure, it's possible I blacked out for a moment.

+ Shortly thereafter, John and L and I were waiting to meet up with the one and only Katy from the Bigfoot Blog and I spied a gaggle of bloggers in the lobby bar. I didn't want to walk over and start chatting because I was worried I would miss Katy and Bubs. My kid was like, "No offense, but...do those bloggers even know who you are?"  Imagine L's shockaprise a few minutes later when they all headed our way, smiling and waving and acting like they *gasp* KNEW WHO I WAS. (after they all left, I may or may not have told my 12 year old daughter to suck it.)

+ Then Katy and Bubs popped in from outside and let me just tell you, they were a delight. I am thrilled I got to hang out with them so much over the course of the week. Bubs and L hit it off immediately, and instantly formed a good-natured rivalry over who would reach 10,000 steps on their pedometer first. After we had dinner, the two of them stood up and began jogging in place around our booth for an extended period of time. Eventually we headed off to Sports Central, which was a perfect place for them to burn off/ramp up their excitement in a safe environment.

+ Speaking of 'safe environments', our room overlooked the hotel pool and the view from our balcony was a diabetic swimmer's dream come true! A station with a fridge to store your insulin, glucose tabs for lows, and water for highs. Not to mention the sharps containers. I want one at our local pool!

+ At the opening keynote the following morning, I was leaning over to say something to L and missed out on what the speaker was saying and suddenly Jess and other bloggers were standing up at their table and gesturing to me to do the same. I thought they meant my kid, so I tried to strong-arm her into the standing position, but Jess and Sara were like, NO, YOU! and so I stood without even knowing why and it was only afterwards I realized they were including me in the people to stop and chat with if you were interested in learning about diabetes social media (I think? It's still unclear). Whatever the specific shoutout was, it remains a very generous act of inclusion and I urged Katy to stand with me as well. She had enough sense to stay seated rather than stand up and look lost and confused like I did.

+ Joe Solo. Joe Solo. Joe Solo. I just. can't even. I asked him for a word of advice about a small issue I'm dealing with at the moment and he wasn't even finished with the first sentence of his reply and I had him in a bear hug. Like, his arm was still in front of him, wedged between us, and he continued to answer me in a very calm tone with the perfect advice as I clinged to him and wept a bit. How do you do it, Joe Solo. I want to write a song about you, Joe Solo. Everywhere I went, people were having these kinds of exchanges with him. He is just pure light. Thank you Joe Solo.

+ Speaking of clumsy hugs, when I finally saw Simon for the first time, I squeezed him so hard that I tripped over my shoes and almost brought the both of us down. "I'll tumble for you!" is what I should have said, but didn't. I'm lucky the DOC is filled with so many huggers and/or non-hug-averse. Including the snuggliest and best-smelling of them all (IMO), Martin. A-Flizzle, you are a very lucky lady indeed!


+ I did not hug Olly Double but I did do a fair amount of fangirling based only on the impression he and his charming family made on me last year. I was jealous of all the college-age T1s that were privy to his performance this year.

+ The social media panel was excellently presented by Kerri and Scott, and Karen shared about that time the DOC had helped her in an emergency. Katy wrote it down in her notes. 

+ And there was a great moment when a mom timidly raised her hand and asked if there was a way to tell if people had been visiting someone's twitter or not. She didn't want her daughter to know she had been stalking and enjoying her twitter feed. Kerri assured her there was no way of tracking visitors, and someone asked what her daughter's twitter handle was. The woman said it was @DiabeticProblem and several people shouted out OMG I LOVE HER! SHE'S HILARIOUS! I RETWEET HER ALL THE TIME! The mom was overwhelmed with the love the strangers were showing for her daughter, and she broke down in tears. 

+ Brian brought a coffee drink to Kerri at the beginning of the social media panel and she said, "For those of you with a FFL Bingo Card with a square that says 'Brian and Kerri being nice to each other, go ahead and check it off.' Oh how I LOL'd. What a witty rejoinder from Kerri! Imagine if there was such a thing! What's that? Oh there IS such a thing? And the other squares are equally as hilarious? Well played, sir. Well played.

[this is where I would link to a photo of said bingo card but I didn't snap one and I haven't read any blogs yet so I don't know if any actual photos exist.]

+ Bennet and Wendy vs. the FDA lady. A very emotionally-charged panel and perhaps not the best scenario for any of the parties involved. But it was amazing to see advocacy in action.

+ Crystal Bowersox is so tiny! And she was just walking through the halls of the conference with her friends, like all the rest of the peeps with green bracelets. I love that my kid can look at her and say ONE OF US.

+ Small world moment: while chatting in a large group of people, it was discovered that Caroline (who I had only recently met) shares my superfannishness for the U2s. As we were going down the list of shows we'd been to, to see if we had unwittingly been at any together, we realized that we both used to belong to the same semi-obscure online journal community about 10 years ago. WHAT. Our conversation quickly devolved into using shorthand like GA and LJ and EXIT and in no time at all we had driven the rest of the group away. Sorry I didn't get more time to chat with everyone else after that.

+ The Exhibit Hall was packed full o' freebies and I grabbed some YA books from Lilly and a Verio IQ meter and I even got a pic with the long-lost cousin of the sorely missed Ninjabetic.

+ But the best energy in the whole place was coming from the You Can Do This booth. Mad mad mad props to Kim and her staff of volunteers for creating a space for people to learn more about this incredibly powerful project. Onward and upward!

+ L participated in pump trials for the new T-Slim and the Animas Ping. She was really taken by all the new features on the T-Slim and it's definitely the pump she's leaning towards when she's eligible for a new one in 2 years. I just realized I didn't get any pics of the T-Slim but if you have any questions, let me know. I'm sure there are other bloggers in the DOC who plan on going into more depth about their trials though.

+ Due to a full day planned for Saturday and not knowing if we'd make it to the farewell breakfast, I felt compelled to say a large portion of my goodbyes prematurely, during the T1 Adults Dance Party on Friday. Since I was basically crashing the one non-kid place those guys had all week, I wanted to get in and out as quickly as possible. But then I got to talking with Simon and Karen and Pete and you know how that goes. All the ladies (the ladies) were having such a kick-ass time on the dance floor, I wish I coulda busted more than just the one move, but the fam and I had a big day ahead of us, so after a too brief throw down courtesy of Montell Jordan, I made my way out. Thanks for making me feel welcome, guys.

+ So many people I only got to say hi to briefly. Jacquie, Meri, Lee Ann, Kelly, Scott, Wendy, Leighann, Chris, Dayle, Kerri, hopefully next time there will be more time (and oh boy I hope I didn't forget to tag someone!).

+ It wasn't all a loss though because I was lucky enough to get some extra time with Scott and Simon over dinner. Thanks for the laughs and the quiet moments both. <3

+ Not to mention extra Disney time with Katy and Bubs. If you read Katy's blog, you already know how clever and funny she is. And guess what, she's the same in real life! She was always quick with a smartly worded observation that usually ended with me doubled over with laughter. And Bubs, where do I begin? Sweet. Independent. Smart. Thoughtful. Hilarious. The kind of kid you'd love to spend all day at Disney with. Hope we can meet the rest of the family next year! :)

tl;dr

The Friends for Life conference is a place where my kid can feel normal for a week, surrounded by people who don't stare when she checks her blood sugar or give her funny looks when they see her infusion site. She can run off with friends all day and we never have to worry about the people she's with not knowing how to handle an emergency. John and I can bond with people who have been there and offer support to families coming up behind us. We can be silly and loud and weepy and quiet and not have to explain ourselves. We came home with our heads filled with new strategies and our hearts filled with memories. Both will help us along on our journey. Thanks to everyone who made it possible. And to those who couldn't make it this year, I really hope to see you next time. <3

HBD YCDT

Huge thanks to Kim for launching the You Can Do This Project one year ago today. 

And much appreciation to everyone who has contributed so far. 

Our community becomes stronger as each voice is added.

Thank you one and all.

Cupcakes for everyone!

Artist credit for the bitchin' unicorn card.

advice about leg site sought

Do any of you cool cats and kittens use a leg site with your (non-pod) insulin pump? L is interested in trying out a new area for infusion sites (she uses a Medtronic pump with Mio infusion sets, fyi). We've only used the belly and the arms, so we don't even know where to start when it comes to the legs. Top/side/back? How far down do you go? She's got a lot of muscle in her legs, so we'd like to avoid those areas, obvs. Anyone got any good tips and experiences with leg sites? Please and thank you!

And in case you stopped by but can't help with my query, here's a sunny song to kick off your weekend.

20

May 31, 1992

May 31, 2012

 

 

I hope we're lucky enough to have twenty or forty more. 

dbw day 7 - we could be heroes

Before I get to today's (yesterday's) prompt, here's an update on Saturday's post. After swagging pretty much all day long (hotel breakfast, tailgating, restaurant dinner) when it was time to go to bed on Saturday, L was 79 with 1.4 units on board. Since she had played two very physically demanding soccer games that day, we gave her a cookie (22 cho) and a brownie (23 cho) with no insulin coverage. At 1am she was 175, so I have her a half correction (.2 units instead of the .4 calculated by her pump). At 4am she was 115, so I did nothing (besides smile and fall back to sleep). When she woke up at 8:20 am to take on her second day in the soccer tournament she was her favorite number (since it's touted by the meter advertising companies as the "perfect" number): 104.

I love how in this photo, all the characters on her t-shirt seem to be reacting to her number. Dr. Horrible is all GRR ARGH, FOILED AGAIN and Captain Hammer and Penny are all HUZZAH! We decided that Dr. Horrible was playing the part of Diabetes/High Glucose in this instance. Did you know he has a PhD in Horribleness?

After as close to a perfect start as that was, would you like to hear how the rest of our day went? Why not! As we were checking out of our hotel room, John made a last-minute stop in the bathroom, where he discovered the insulin bottle chilling in our recently moistened Frio pack. We almost forgot the insulin again! Lol/yikes!

At the end of the tournament, L's team had won 1 of their 3 games and came in 3rd out of 6 teams in their division. More importantly, the girls had a super fun time. We stopped at Ikea on our way home and after getting our Swedish shop on, I suggested that L check her BG, since who knows what was going on after all that crazy activity from the weekend and sitting in the car for so long. "Uh, I think I'd better check again. It says 512, but that can't be right." And then, "The second check says 514." Ohhhhkay. I guessed that the insulin in her pump was skunky from being in the hot hot heat of the soccer fields for two days straight, so we did what came naturally: a reservoir change in the Ikea parking lot. Good thing we had that extra bottle of insulin along. An hour and a half later we were home and she was down to 180, phew.  /And thus ends the post-script to Saturday's post.

As for the final prompt of Diabetes Blog Week: Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.

Well. Honestly, the first person that popped into my mind was my kid. I mean. Obvs. But I had a conversation with her a while ago in which she told me straight out that she hates when people (well-meaning family members) tell her how brave she is, and how proud they are of how well she deals with diabetes, and oh they're just so proud of what a brave little toaster she is yadda yadda yadda and I'm pretty sure that using the word "hero" to describe her would fall into the same category of making her feel really uneasy. So instead how about this. Here is one definition listed online:

hero (in the homeric period): a warrior-chieftain of special strength, courage, or ability

I gotta say, I think ALL of us who deal with diabetes are, at times, warriors of special strength, courage, or ability. And if I didn't think that before, I definitely do now, after spending the last week reading hundreds of d-blog posts. So thanks to everyone who participated in Diabetes Blog Week for sharing and inspiring. And thanks to all those who read and commented on my posts. But most especially, thanks again to Karen at Bitter~Sweet for bringing the community together to share their every day moments of heroism, large and small, even if they didn't realize that's what they were doing.

dbw day 6 - picture this

Today's Prompt: With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.

We're spending the weekend in a town a few hours north of where we live attending a soccer tournament. Here's what our day looked like.

 

We always pack backups of our diabetes supplies. And backups of our backups. Hilariously, we forgot to get the extra insulin out of the fridge when we left town yesterday. Luckily, another soccer mom that lives in our neighborhood was driving up this morning, so we asked her to stop by our house and pick it up on her way here today. I actually found it strangely comforting that we left the insulin behind. It makes me feel like diabetes is just along for the ride, and we can forget about it for a moment just as easily as we might forget to pack our chairs (which we also did). Go us!

 

Free pancake breakfast anyone? Nothing like starting the day off with a bit of a SWAG (it was thinner than the ones we make at home, so we guessed 19 carbs). L asked a hotel employee if they had any sugar-free syrup, and I was sure he'd say no, but they had some in a cabinet under the pancake maker. Score!

8:30 am and ready to hit the field for the first of three games this weekend.

 

In between games we had a cook out and snapped some team photos.

 

We brought brownies and I cut them into proper serving sizes and noted the carb info.

 

As we were leaving, we saw this on the back of someone else's minivan. It made me smile to think there might be another member of our 'club' out there on the field somewhere. In fact, with 299 other teams at the tournament this weekend, there's probably more than one.

: ( :

dbw day 5 - know this

Today's topic: “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  

So I asked my kid this question, and she had two answers.

1) You don't have to be fat to have diabetes.

2) No, diabetes isn't "fun" and I don't feel "lucky".

Apparently these are two things that other kids have said to her on multiple occasions. In the first example, she told me that more than one time, with a couple of different kids, when she shared that she has diabetes, they responded, "But you're not fat!" I can't blame these kids, because before L was diagnosed, I was just as misinformed. But it's still annoying.

As for the second example, sometimes when she's playing sports with kids who haven't been around long enough to see her checking BGs and injecting insulin, if they see her eating some Skittles in the middle of a game they'll say "OMG YOU'RE SO LUCKY! I WISH I HAD DIABETES, THEN I COULD EAT CANDY WHENEVER I WANTED".

Whenever these comments are made, I know L does her best not to roll her eyes and tries to explain things without looking like she's in a rage comic, but I can only imagine how frustrating it is to hear these comments not just once, but multiple times. Here's a graphic she recently made.

Coping through memes. She's well on her way to being a full-fledged member of the DOC.

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.


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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.