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

DOC at FFL 2011

Growing The DOC

National Health Blog Post Month, Day 10: The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?NHBPM_2011_Day10

The Diabetes Online Community (DOC) is growing. People with diabetes (PWD’s) are discovering that there are other people out there in the world and on the internet just like them, who know what they are going through, and who deal with the same things day in and day out.

According to the World Health Organization, in August of 2011 there were 346 million people worldwide who have diabetes. Most of those 346 million people have never even heard of a diabetes community, much less a community that is online, worldwide, and accessible at any time, day or night.

Last week there were 111 people involved in the weekly Diabetes Social Media Advocacy (#DSMA) Twitter chat. That is 111 people who either have diabetes or who live with and love someone who does. For every one of them there are millions more who are living with diabetes alone, with no support, no encouragement, and nobody to turn to who truly understands the daily pricking, poking, counting, injecting, and correcting adventure that is life with diabetes.

DSMA is not everyone in the diabetes online community, by far. There are a host of diabetes online gateways and communication forums, including Juvenation, Children With Diabetes, TuDiabetes, dLife, Diabetes Daily, and ACT1 Diabetes, just to name a few. (If you know of other online communities for PWD’s, please share them in the comments below.)

The point is that we, as a diabetes community, have a lot of room to grow. So far we’ve really grown organically, and often accidentally. Someone may be searching for something about diabetes and spot a link to a diabetes blog. From that blog they may find references to other blogs, different types of information, and maybe even reach out to an online community with questions.

Healthcare professionals need to better recognize that patient advocacy and support is not going to go away, and that it is not a bad thing, and encourage patients to get more involved with the online communities that are there for them. From those that I’ve talked to, the overwhelming majority of doctors do not like their patients getting information online relating to their health condition. Most doctors would prefer that a patient contact them directly for support. Meanwhile, these same doctors go to great lengths to remain incommunicado, often having an unlisted personal phone number, not sharing their email address, staying off of Facebook, and forwarding patient calls to voicemail instead of a real live human being after hours.

If you, as a doctor, expect your patients to look to you to be their primary contact for questions, then you must be available 24/7 just like the online communities are. Otherwise, change your expectations, because patients are not going to stop looking for the information and support that they need to live with their chronic condition.

I realize that doctors are cautious about patients contacting other people who do not know their medical history and asking clinical questions. It’s a valid concern, but it doesn’t cover the whole picture of what it is like sharing a world 24/7 with diabetes.

The Diabetes Online Community is about LIVING with diabetes. Our doctors and healthcare professionals play a critical role in our living with diabetes, but they are supporting cast. We, the people WITH diabetes, are the stars of the show. Doctors need to make sure that the patient views them as part of the solution, a partner, not some overbearing dictator of their health.

Diabetes is a chronic illness that requires people to manage almost all aspects of their disease independent of a physician’s watchful eye. We look to our endocrinologist, CDE, or primary care physician for overall guidance, but ultimately we are the ones taking action on all of the diabetes decisions we have to make on a daily basis. Nobody calls their doctor every single time they need to inject insulin. We educate, we calculate, and we dose accordingly.

The diabetes online community also provides something else that most doctors simply can’t, and that is time for the emotional side of the disease. We take time to get to know each other, and bond. Diabetes is an incredibly emotional disease, and the online community is more capable of providing support and encouragement and understanding at the point of need than any doctor’s office can, because those in the community deal with the same emotional triggers day in and day out.

If there is anything that I have learned about diabetes in my 30+ years with it, it is this: The only diabetes quick fix is glucose when you’re low. Everything else takes time, patience, and deliberate action to make it better. Having a community of people available who understands is the difference between thriving with diabetes and simply surviving with it.

DOC at FFL 2011

Photo by C.

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

This is also my belated post for dblog day 2011: http://diabetestalkfest.com/blog/?p=461

dblog day 11-09-2011

5 Things

5 Things

National Health Blog Post Month, Day 5: 5 things that changed my life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.NHBPM_2011_Day05

Having had diabetes for over 30 years now, I’ve seen a lot of change happen. Some of the changes with diabetes have been subtle, like acquiring a Delica finger pricker to replace the spring-powered nail gun of a finger pricker that I was using before. Other changes have had a huge impact on my life with diabetes.

5 Things

#1: BG meter
When I was diagnosed in 1981, most people determined what their blood sugar was by peeing on a stick. Actually, it was a strip. But still, it was a stick. That you peed on! The problem with peeing on a stick (beyond accidentally spraying the bathroom with wee) is that it only tells what the range of the blood sugar is, and it’s often hours behind reality. Blood, on the other hand, is much more accurate, telling you what your blood sugar is right now, rather than what it was three or four hours ago.

After the peeing on a stick days, there were these strips that you would put a drop of blood on, wait a few minutes, then wipe off and see what range your blood sugar was based on the color of the strip. If you wiped the blood off too hard, sometimes the color of the strip would come off with it. It took some practice. I also learned that I could cheat and wipe it with an alcohol swab and the color would be lighter, indicating a lower BG than I actually was. I mean…wait…I never did that…honest. To save on costs, my mom would cut the strips into halves or thirds so that they would last longer. You have to be frugal with diabetes sometimes. We may or may not have also eaten cereal with a fork so that we could pass the milk on to somebody else.

I really don’t know when I got my first BG meter. It was sometime when I was in elementary school. I remember it was huge, and it took several minutes and a huge blood drop (or two, or three) to discover what my blood sugar actually was. Today, our meters are pocket-sized, only taking 5 seconds or so to analyze a very small sample and report the results. It’s a beautiful thing! (Except when the numbers on the screen are less than desirable, but that’s a different blog post.)

#2: Insulin pump
My insulin pump has granted me more freedom with my diabetes than any other single advancement. It allows me to be able to do what I want and eat what I want on my schedule (or lack thereof, if I so choose). I love it, and I don’t ever want to be without it (YDMV).

#3: CGM
I’ve had my continuous glucose monitor for a little over a year now. I’m still not the greatest at wearing it regularly, but I absolutely love it when I do. I love that it helps me to keep my BG’s closer to normal, helps warn me when I’m going low or high, and often prevents disaster. My CGM is integrated with my pump, and I love having these two devices working simultaneously to give me data that I can use to improve my diabetes control. Would you look at that…I think I just motivated myself to go put in a new CGM sensor. Go me!

#4: Connecting to the DOC & PWD’s
There is something very special about the Diabetes Online Community, and that is all the people with (and without) diabetes in it. I have met some amazing people in this community, and I have learned so much from them about sharing my life with diabetes. I have also learned all kinds of tips and tricks, such as what tape sticks best to someone made of awesomesauce. Between my laptop, iPad, and phone, I manage to pretty much stay in contact with the DOC 24/7. Beyond the folks the make up the DOC, my favorite thing about it is that no matter what time it is, where I’m at, or what I’m doing, I can always reach out (typically via Twitter) and get a response. It’s awesome!

#5: Friends For Life
Heed these words: If you have never been to a Friends For Life event, then you need to find some way to make that happen. I went for the first time last July (2011), and it was life changing. I got back home and immediately put my time off on the calendar to go again next year. Friends For Life is one of the only places where you can walk around with an insulin pump hanging on your pants pocket, or check your blood sugar in a crowded room, or ask, “How many carbs are in that?” and not get even so much as a sideways glance. It’s a rare opportunity to be in the majority of people with diabetes, where people without diabetes are the minority. Plus it’s an amazing opportunity to meet friends from the DOC, and bond in real life over giant M&M cookies and a shared affinity for plaid.

Disclaimer: The kind folks at OneTouch did not pay me or solicit me to write about or mention their Delica device. That said, if they want to send me some fresh lancets, that would be awesome.

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