We Are All Made Of Stars…

FFL BraceletsAt most conferences, you have opportunities to meet famous people and CWD’s Friends For Life was no exception. Crystal Bowersox, Kris Freeman, Jay Hewitt, Will Cross (and many more!) were all on hand to pose for pictures and provided inspiration to the kids at the conference. From climbing Everest to being a finalist on American Idol, they’ve all reached new heights with Type 1 diabetes. They are stars.

Not all of us are gifted with golden throats or strong physiques. It’s the roll of the genetic dice and a lot of hard work that got them to where they are today. They are raised up as aspirational examples of what Type 1 kids (or all kids) could become, but I’m here to tell you what I know:

We are all made of stars. 

  • The child who inserted her first insertion set on her own – star.
  • The father who gets up in the middle of the night for blood sugar checks – star.
  • The sibling who carries glucose tabs in his backpack “just in case” – star.
  • The mother who comforts the parents of a newly diagnosed T1 – star.
  • The teenager who realizes that skipping shots doesn’t help in the long run – star.
  • The researcher who refuses to give up until we have a cure – star.
  • The stranger who hands over test strips to someone because they’re out – star.
  • The nurse who talks to a patient as a person and not as a number – star.
  • The doctor who doesn’t judge, but rather assesses and finds a way to make it better – star.
  • The person who says: “I understand.” to you and truly does – star.

A single star, however bright it is, will not light up the night sky.

But we, as a community, together shine so brightly, because we are all made of stars.

Fab Five Fridays: FFL Style

I still haven’t recovered from the Children With Diabetes Friends for Life Conference (CWDFFL) last week. I’m tired in a good way and my head is still full of ideas that I want to share with the DOC (and others that I will keep to myself because they are so very personal to me). Expect to see a lot of posts over the next few weeks about FFL as I come back down to earth, but for now… it’s Fab Five Fridays: FFL Style!

GlucoLift1. Glucolift – I’m addicted to the Cherry glucose tabs. In a good way.

Christopher Angell, a Type 1 diabetic himself founded the company and I’m so glad he did. (His dad helps at trade shows… see Christopher’s comment below…They currently offer three flavors (Orange Creme, Wildberry, and Cherry) but I think there are more flavors on the horizon. (Many in the DOC are pulling for Nutella flavored tabs, but Chris is keeping mum…)

You know how you’re low, pop a glucose tab that you bought at the store, and go: “Oh, yuck. I have to chew this? Yuck!” Glucolift doesn’t make your brain do that. And unlike the old B-D Glucose tabs (which haven’t been available for years, may they rest in peace) or Starburst or juice, you’re not going to overdo it and end up sky high a few hours later.

You can order Glucolift directly from their website and they send you a nifty-gallifty (Extra points if you know that phrase’s origin) travel tube and a cool sticker. When we were at FFL, Chris put a Glucolift temporary tattoo on my daughter’s arm (with my permission, of course). She wore that tattoo proudly and showed everyone her “rocket ship!”.

I keep a jar of Cherry next to me in the cupholder in the car, one on my bedside table, and a full travel tube in my purse.

(They have a sample pack with all three flavors and a free travel tube so you can pick your own favorite.)

2. Drs. Sean and Tamara Oser – I attended a session about how to be the best patient you can be, led by these two very intelligent and very personable doctors. Sean is a Type 1 diabetic and so is one of their gorgeous twin daughters. They have the full 360 degree perspective: as doctors, as patients, and as parents of patients. I learned so much from them (and was shocked by some of the statistics they shared, which is another post in itself), but the cool takeaway was a planning worksheet to prepare you for your appointment. I’ll ask them if they’d be willing to post it online for download, because it’s so worth it. Sean blogs at t1works and Tamara blogs at t1family. Check them out!

3. Dr. Ed Damiano and the Bionic Pancreas (sounds like a band, doesn’t it?) – I’m still, a week later, trying to put into words what I felt listening to this gentleman speak. Driven by the T1 diagnosis of his young son, he set out with a grad student of his to create an algorithm that would push a little insulin or a little glucagon based on a CGM reading. I held it in my hands and sat with Anna at our table, who participated in the human trials this spring. (Scott Johnson even wore the CGM portion of it for the remainder of the conference and we saw his BG numbers on a large screen) I want one now, but I’m willing to wait four years until it’s available. Four years. It may seem like a long time, but in the diabetes timeline, it’s a blip. I’ll have a whole post about him and the Bionic Pancreas. Soon. Promise.

4. Meri Shumacher – Mom to four boys, three of whom at T1, she was one of the keynote speakers. Dr. Richard Rubin, who was a huge force in the DOC for years, passed away from cancer this year, and Meri had a special connection with him. Please have tissues handy when you read My Homage to Dr. Rubin at FFL 2013 – this is her keynote address.

5. Friends For Life 2014 – July 2-6, 2014. ORLANDO. Put it on your calendar. Look, whether you are an adult Type 1, teenager T1, parent of a T1 or interested in diabetes research, this is where you need to be. As I sat next to my parents at the keynote (They were so gracious as to attend to provide me some much needed toddler backup.), I wished with all my might that this conference existed thirty years ago. I’m grateful that it exists now. Join us next year. Please. I want to meet more amazing people. You were missed.

Rockstars Don't Always Wear Leather…

Sometimes, rockstars wear plaid shirts with a comfortable sweater. Richard Vaughn doesn’t need to strut around in tight leather pants like Tom Cruise’s Stacee Jaxx in Rock of Ages. He’s badder than that. Much badder.

The Rockstar.
The Rockstar.

At least to me. When I hear about Type 1 diabetics who have lived well for a long time, my giddyness gets kicked up a notch. More and more of us are passing those age/diabetes milestones we (in the dark of night with the lights off, buried deep under the covers) thought we’d never reach. I’ve met a few T1s with the famed 50 year Joslin Medal, but last week I got to meet my rockstar at the Children With Diabetes Friends for Life.

Richard Vaughn was diagnosed at six. He’s seventy-three now. Even with my mediocre math skills, I can confidently say that he’s been Type 1 twice as long as I have – and then some. This year, he made the choice to come to this conference and I can only hope he understood the impact he made on many of us. (He’s a blogger and an author. Read his stuff over at Richard’s Rambling Review…)

“Have you met Richard?” “Have you seen him?” “Where is he?” “Which session is he in?” These were questions peppered throughout the conference. I snuck in late to a session about social media led by Kerri, Scott, and Jessica Apple of A Sweet Life, and heard him asking a question. “Will someone point out where he’s sitting?” I hissed. When the lively discussion ended, I wended my way up to the front, only to find that he had slipped out the side door.

Like a swooning obsessed fan, I ran. Out of the room, down the hallway, until I saw him steadily making his way towards the main meeting area.

“Mr. Vaughn!!! Mr. Vaughn!!!!” My laptop bag was bruising my thigh, but I refused to stop and hoist it higher. I didn’t want to miss this opportunity.

He stopped, turned, and smiled warmly. I was slightly out of breath (working on that exercise thing, remember?), but the words tumbled out: “Mr. Vaughn, I just wanted to meet you and tell you what an inspiration you are. Thank you so much for sharing your story with us. I’m so glad you’re here.”

And then I couldn’t say anything else.

I realized that I was in the presence of someone who has been through so much on the diabetes timeline. Despite very little diabetes management help in the beginning of his life, he’s healthy. I want to be him in thirty-sixish years. All I could do was reach out and grasp his hand.

He’s charming. Lovely. Gentle. Sweet. Knowing that he was on his way to somewhere else, I let him go. How much I wanted to sit with him and just soak up all he’s teaching us, but alas….

And for the rest of the conference, I couldn’t find him alone. He must have posed for a thousand photos, shook hundreds of hands, and answered the same questions a million times. I don’t think he minded. Next year, I’m hoping that he’ll be back and this time, my tongue won’t be tied. (It probably will, but that’s OK. I’ll get to see him again.)

So, thank you, Richard. Thanks for being my rockstar. And for not wearing leather pants. I’m figuring you didn’t because Florida is pretty hot in July. That’s it, right?

My Heart Is Full…

Do you know the cartoonist, Gary Larson? He’s the guy who does The Far Side®.

My life has been a series of Gary Larson panels. Growing up, I was known as “Ginger Ginger” by my parents. (Due to copyright issues, I refuse to illegally post the panel, but if you google Gary Larson and “Ginger Ginger”, it describes me and any other teenager.) But this isn’t about that cartoon. (Or the one about Midvale School for the Gifted. Or the one I swore was just for me as a languages major…)

It’s about this cartoon where a kid asks to be excused… except in my case, it’s my heart.

I just got back from the Children With Diabetes Friends for Life Conference and I’m suffering simultaneously from withdrawal and overload. The people I met, the things I learned, the emotions that I experienced… it will take a few days to fully process into actual coherent words, but when it does… you have been warned.

Thanks to Diabetes Advocates and the Diabetes Hands Foundation‘s scholarship, the connections I made and the mindset I’ve been in will last until… the next CWD FFL Conference (July 2-6, 2104 in Orlando). The path I’ve walked on for the past thirty years with diabetes will be taking a new direction, so buckle up and come along with me.

Once I can stop being one hitching breath away from a full blown crying jag (which I’m sure will come, but not out of sadness…), I’ll talk about Dr. Ed Damiano’s AP project, about meeting Richard Vaughn, about the feeling of “getting it”, about telling someone that “I’m still alive”, about the FDA and talking to them about the Strip Safely campaign, about the moments that right now are still raw…

But in the meantime, my heart is full.

And it will be like that for a while.

And I’m happy with that.