Friends For Life

FFL12 - Team Type 1 Session

Team Type 1 and Life With Diabetes

Friends For Life is not just for children with diabetes. It isn’t just for adults with diabetes. It is also for parents, grandparents, siblings, significant others, and friends of people with diabetes. Friends For Life is for those who need hope, who need help, and who need reassurance that anything is possible for people with diabetes, whether they themselves have diabetes or not.

Phil Southerland, founder of Team Type 1, lives to prove that anything is possible with diabetes. I’ve seen the presentation of the story of Team Type 1 several times, but Friends For Life was the first time that I’ve seen it directed to parents and caregivers of children with diabetes.

FFL12 - Team Type 1 Session

Phil started by introducing himself, and sharing the story of how he and his mom dealt with the reality of the diagnosis of Type 1 diabetes when he was a small child. I can relate to Phil’s story, as I was diagnosed at about the same time he was. I was two years old when I was diagnosed, and though doctors tried to fill my parents with hope that a cure was on the way, the reality of the diagnosis at that time, and for me at such a young age, was not as optimistic as it is today.

But Phil and I both made it, and we got to experience the Team Type 1 session at Friends For Life 2012 with one of us on stage, and the other (me) out in the audience observing how parents with the same diagnosis as our parents received about us were trying to figure everything out.

I was so happy to see the room full of orange bracelets (worn by those without diabetes). Friends For Life is ultimately a Children With Diabetes conference, and with the exception of an Adult T1 Track, it is geared primarily to children and their caregivers. For this session, I was actually the one in the room that wasn’t where I was supposed to be. Not really a surprise, as I’m rarely where I’m supposed to be, but still, it thrilled me to see so many parents who were interested in learning that their kids can do ANYTHING with diabetes.

Several of the parents in the room had specific questions for Phil about how to manage their child’s diabetes in various situations, such as while swimming, playing soccer, and other sporty situations. Something I see often with parents, especially those parents whose child is recently diagnosed, is that they want black and white, straightforward, no argument answers about how to deal with some aspect of their child’s diabetes. They don’t want it to be as “bad” as it is.

The truth of the matter is that diabetes is not black & white. It is gray, purple, green, yellow, and every other color of the rainbow. Although it has its tough days, living with diabetes is one of the best things that ever happened to me. If you ask Phil, he will tell you the same. With diabetes, you have to really know your body, pay attention to it, and as a result many people with diabetes (PWDs) are as healthy or healthier than a lot of people without diabetes. I find a lot of strength in that.

The specifics of diabetes varies for every single person. Honeymoon periods (the period of time for some recently diagnosed Type 1 diabetics where their body is still producing small amounts of insulin, which typically decreases as time goes by) last for weeks, or months. Low blood sugar symptoms show up at a BG (blood glucose level) of 110 mg/dl or 45 mg/dl, and sometimes not at all. Every single person with diabetes varies.

Phil’s best advice to the parents, and something I agree with him 100% on, is to let children become the CEO of their own body. Keep focused, but learn and let children learn from their diabetes successes and mistakes. Blame does not breed learning.

If your child has a low blood sugar, it’s not your fault, and it’s not their fault. If your child has a high blood sugar, it’s not your fault either, nor is it their fault. The same applies if you have Type 1 diabetes yourself. That is diabetes, and over three decades of living well with diabetes has taught me that it is critical to remove the emotion from diabetes numbers, such as blood sugar levels and A1C values.

It’s just data, and it isn’t telling you that you are doing it right or doing it wrong. Only a human can assign emotion to math. A blood glucose meter cannot do that. Take diabetes data with the same face value as a road sign or a traffic light: It is a cue that some sort of action needs to take place, whether that action is to make an adjustment, stop, proceed with caution, or keep going and you’re doing great!

The next time your child comes home from school, resist the urge to immediately ask them what their last BG reading was, or how they are feeling, if they need a snack, or how many carbs did they eat for lunch. Instead, ask them to tell you about the most exciting thing to happen to them that day. You may be surprised to learn that diabetes is not the most exciting part of their world, so don’t make it the most exciting part of your world either (unless you’re at Friends For Life).

Life comes first.

Friends For Life 2012 - A Whole New World

Don’t Just Do Nothing

Last Thursday morning officially kicked off the Friends For Life 2012 conference program. Appropriately, for me, it started with a plate full of bacon. I love breakfast any time, but I especially love breakfast at Friends For Life. Imagine being in an environment where everything you want to eat, from salads and entrees to sides and desserts, is carb counted, serving sizes are indicated, and everything is delicious. That’s food at Friends For Life.

A very special thanks to one Mike Schurig, aka Food Dude, for all of the yellow and green cards indicating nutritional values, making sure that there were Celiac-friendly options, and for helping to make sure that people with diabetes (PWDs) and their families had excellent food options to choose from.

Coupled with breakfast on Thursday morning was the opening keynote address by Tom Karlya, aka Diabetes Dad. He encouraged everyone at Friends For Life to not be satisfied with sitting on the sidelines, but to get up and do something to make a difference in the world, no matter how big or small it may seem. Then he showed us this video of Derek Redmond and his father from the 1992 Olympics in Barcelona.

Tom had a very simple message for everyone: Don’t just do nothing. Friends For Life was started because one family was going on vacation in Orlando, Florida and they decided to spread the word and see who all else with diabetes might show up. 500 people showed up, and Friends For Life was born.

I had a boss once who said to think about the things that people would remember 100 years from now, and make those things the focus of your life’s work. I can’t say for certain that there is anything that I have done (yet) that will be remembered 100 years from now, but if I can make the life of a person with diabetes better, then I feel like I’m on the right track.

Don’t just sit on the sidelines when you know that there are people in the world that you can help. Like Derek Redmond’s dad, get up, push through the barriers, and act. As much help as we may need ourselves, we can do even more when we help each other. Together, we can make a difference. That is what Friends For Life is about, that is what Students With Diabetes is about, and that is what being a person with diabetes should be about. We can self-promote ourselves all day long, and sometimes that is exactly what it takes to get things moving in a positive direction, but at the end of the day it is the lives that we have made better that count the most.

Friends For Life 2012 - A Whole New World

Friends For Life 2012

Friends For Life 2012

The world is full of both extroverts and introverts; individuals who gain energy and fulfillment through being around and engaging groups of people, as well as individuals who thrive better when they have time to themselves and are not as engaged socially.

There are all sorts of definitions and distinctions of what makes someone an extrovert or an introvert. You could take 20 personality tests and read the entire self help section of your local bookstore and still not have a clear definition of the two classifications for all situations.

For me, that is the kicker. I tend to sort of meander between extrovert and introvert depending on the situation. I love being a part of big groups, sharing information, having both normal and nonsensical discussions, and feel like I’m being included, if not leading the experience. However, I sometimes reach a point where I also need my “me” time to figure things out on my own and reflect, plan, scheme, and let my thoughts run wild without the constraints of appropriateness to the situation.

When I need to be an extrovert, I gravitate toward situations where chances are good that I will be at or near the center of attention. As an introvert, you can sometimes find me in a state of observation, quiet, seemingly on the outside looking in.

I’m like this with diabetes as well. There are times that I am perfectly comfortable wearing the proverbial tights and cape and hooker boots that make up the Super Diabetic persona (hey, it worked for Superman…don’t judge me), educating the masses about the ways of the ‘beetus, managing meals in a single bolus, calculating carb and blood sugar ratios in my head faster than a speeding bullet, and encouraging the newly diagnosed and recently overwhelmed with a healthy dose of You Can Do This.

There are also times when I don’t want to deal with my diabetes, much less try to convince other people that it is easy or that I have everything under control. Sometimes, with diabetes, it’s hard, and I suck at it. Not most of the time, thankfully, but sometimes it is overwhelming and I just need some time to reflect and figure things out.

Friends For Life 2012

This past week I was at Friends For Life 2012, which is this extrovert’s dream come true, yet there were times that I found myself reserved and low-key. I spent quite a bit of time listening and observing, sometimes clinging more to my introvert tendencies to try and figure everything out than clamoring for attention and putting my diabetes on stage and in the spotlight. This wasn’t my first Friends For Life, and I didn’t feel as if I was around strangers that I needed to figure out. I just wanted a fresh perspective, for both myself and my diabetes.

I really needed a week with people with diabetes. There is something extremely special about food buffets that have carb counts on them, not being looked at strange for whipping out a BG kit and pricking my fingers in public, and people that understand what a glucoaster is and are riding it all week right along with you.

Now that I’m back home, I’m putting together my thoughts on some things that I learned this past week. From all the things that can come with diabetes beyond just insulin, to amazing things that people with diabetes can do, to challenges with the FDA, observations of parents of children with diabetes, and even the diabetes online community in real life, I’ve got plenty to think about and share. But first, I need a night to rest after a week of staying up until the wee hours of the morning every night. After all, nobody goes to Friends For Life to catch up on sleep.

Thirty-One to One

I’ve been sitting here trying to reflect on what 31 means to me today. While I’ve got deadlines looming, a busy weekend ahead of birthday celebrations and work every chance that I get, it’s hard for me to devote a lot of attention to the gravity of 31 years with Type 1 diabetes.

Last year, for my 30th Diaversary, I jumped out of an airplane. It was an incredible experience, and I vowed that I would do something just as equally amazing every year for my Diaversary. Living awesome with diabetes is worth celebrating every day, but even more so on the day that you were diagnosed with what was once believed to be a death sentence.

Today, on my 31st Diaversary, my goals are to meet the five (count them…FIVE!)  work deadlines that require my attention. I want to line up some of my blog posts for next week’s Diabetes Blog Week. I need to send some emails, and tie up a few loose ends. I’m hoping to be able to go into this weekend with some semblance of a sense of accomplishment.

Oh, and maybe I’m going to a Star Trek themed Murder Mystery Dinner tonight.

A. Star. Trek. Themed. Murder. Mystery. Dinner.

Make it so, Number One! MAKE IT FRIGGIN’ SO!

Murder... The Next Generation

Also, A-Flizzle had a bobblehead made of me for my 31st Diaversary. I’m already imagining all of the adventures and photo opportunities for me and my bobblehead at Friends For Life this year.

Check out the caption A-Flizzle put on it. She’s pretty swell. Cue “Awww…” aaaaand…ACTION!

Martin Wood Bobblehead Caption

All right, Mr. DeMille, I’m ready for my mandatory Diaversary cupcake.

A-Flizzle and Martin - Osborne Family Lights 2011

Holiday Traditions

National Health Blog Post Month, Day 25: Never Have I Ever. You stick to your guns – now tell us about what. What is something you’ve never done but want to? What’s something you’ve never done and won’t budge on?NHBPM_2011_Day25

Growing up, Thanksgiving for me was staked in tradition. All of my family would get together at my grandma’s house for the full Thanksgiving spread: Turkey, ham, stuffing, peas, cornbread, green bean casserole, cranberry sauce, pies and cakes galore, and more.

Over the years though, tradition has been replaced with change. People’s lives take a turn, some for the better, others for the different. Family members that I grew up with all have families of their own now, and we have moved into our own lives, where many of us have formed our own traditions.

Last year for Thanksgiving, A-Flizzle and I were in the Caribbean. We were in Key West petting six-toed cats at Ernest Hemingway’s house.

Hemingway House 2010

We were having a great time at the Hog’s Breath Saloon.

Fun at Hogs Breath Saloon 2010

We were sitting in the Bahamas having guacamole that was made fresh right in front of our very eyes.

Holy Guacamole

We were on an island, enjoying the sun. We were snorkeling above underwater plane wreckage and shipwrecks. We were drinking copious amounts of Diet Coke that we had to climb several flights of stairs on a cruise ship to get refills for (totally worth it, by the way!).

With that same spirit in mind, but not having quite the same amount of time to get away this year, we decided to go to Disney World for Thanksgiving. We had some time left on our tickets that we had purchased during Friends For Life last summer, and we needed to use them before the end of the year, so we figured…why not?

We spent the day yesterday at Animal Kingdom ogling the wildlife and having wild adventures.

Animal Kingdom Elephant 2011

At Epcot, we got educated Disney-style and traveled back to the 80’s with a little Captain EO. At Hollywood Studios, we proceeded to get into the Christmas spirit with The Osborne Family Spectacle of Dancing Lights.

The Osborne Family Spectacle Of Dancing Lights 2011

Aside from losing my cell phone and a low BG of 35 that sneaked up on me at Epcot, which was fortunately caught and corrected without incident, it was a pretty awesome Thanksgiving.

There was a time when I would have said that I wouldn’t miss the time with my family on Thanksgiving. I feel like I haven’t budged on that ideal. I’ve just twisted the rules a little bit.

Have family, will adventure. Even on holidays.

A-Flizzle and Martin - Osborne Family Lights 2011

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

Coco and Me - FFL 2011

Here A Mascot, There A Mascot

National Health Blog Post Month, Day 24: My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?NHBPM_2011_Day24

Dictionary.com defines a mascot as “an animal, person, or thing adopted by a group as its representative symbol and supposed to bring good luck.” I feel like there are a lot of potential candidates for a diabetes mascot.

First, there is this thing that Jacquie and I found at Friends For Life last summer. I’m not even sure what it is. Is it an insulin pump? Is it a BG meter? Is it a calculator? Is it a magic robot with an affinity for sideways exclamation points?

Jacquie Meter and Me - FFL 2011

Then there is Lenny the Lion. Granted, he’s already got a full-time gig as the Medtronic mascot, but he does have the advantage of being well-versed with an insulin pump. And think, with those cat claws, you would never have to replace a lancet ever again!

Lenny and Me - FFL 2011

Coco is a great candidate for a mascot as well. She has Type 1 diabetes. She has lots of friends and lots of adventures. She’s a lot like me! Except her primary contribution to conversations is “Eeek!” But I know people that have a lot more to say than just “Eeek!” and I wish they were as limited in their vocabulary as Coco is, so maybe that isn’t such a bad thing. You know what they say (whoever “they” are)…a little “Eeek!” goes a long way.

Coco and Me - FFL 2011

There is also Phil Southerland, who makes a great representative for the diabetes community. He’s a cyclist and co-founder of professional cycling’s Team Type 1-Sanofi, author of Not Dead Yet, and he’s from where I live, Tallahassee, Florida. He was also recently appointed Director of Healthcare Policy, Planning and Patient Advocacy at the World Health Organization. And he has Type 1 diabetes.

Phil Southerland and Me - FFL 2011

I think any of these candidates would make a fine diabetes mascot. However, I’m glad we don’t have to pick just one. The more characters there are in the world advocating and representing and bringing diabetes to the forefront of people’s attention, the better.

 

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

FFL_With Our Powers Combined

Photobombing Friends For Life

National Health Blog Post Month, Day 20: LOL post. Write a post about a moment that made you laugh. Or a video, picture, blog post, or something else that made you laugh.NHBPM_2011_Day20

At Friends For Life (FFL) last year, there were so many highlights from spending the week with people with diabetes that I would be hard pressed to feature them all in a single blog post. I’ve mentioned FFL here and there, but one thing that makes me laugh every time I look through FFL pictures is the incessant photobombing that was captured between me and one Scott Johnson.

First there was this…

FFL_Scott Johnson Photobomb

Then there was this…

FFL_Martin Wood Photobomb

But with our powers combined, there was this…

FFL_With Our Powers Combined

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month