Tag Archives: friends for life

Friends for Life Orlando 2017.

Full disclosure: I was able to spend last Wednesday, Thursday, and Friday at Friends for Life in Orlando, Florida. Diabetes Patient Advocacy Coalition paid for my travel. All opinions are unquestionably mine, and it was my honor to advocate before so many wonderful people.

Just like last year, I worked the DPAC booth in the exhibit hall at Friends for Life, the largest gathering of People With Diabetes in the country. I was also lucky enough to sit in a couple of sessions and spend time once again with diabetes friends.

I remain grateful for the opportunity to advocate for those living with and affected by diabetes, and in the USA, DPAC is the best, easiest way I know of to make your voice heard by elected officials and policy makers across the country. If you haven’t yet, please download the DPAC app now and add your voice to the growing chorus advocating nationwide.

There was quite a bit of lively discussion during the various advocacy sessions led by DPAC CEO Christel Marchand Aprigliano and Stewart Perry. People were asking questions after the sessions and letting their friends know about DPAC too, and that gives us all a great feeling. I know our advocacy efforts will only grow from here.

The rest of the conference (or at least the part that I was there for) was wonderful too, as always. The Children With Diabetes staff really goes out of their way to make everyone feel welcome… even the exhibitors.

I’m not sure I can tell you anything special about this year’s gathering though. I think there are a number of reasons for that.

First, think about it: there really aren’t any amazing product launches that are new. Medtronic’s 670g is fairly new, but Medtronic was once again absent from the largest concentration of Type 1 diabetes patients in one place anywhere in the country.

There weren’t any recent research announcements either. Nothing that makes patients (and especially parents) excited for the next improvement in diabetes management.

Plus, I think Children With Diabetes has a problem. It’s a wonderful problem created by their wonderful efforts to bring additional sessions to adults, and emerging adults, and teens and tweens, and parents, and other caregivers.

I guess what I’m saying is that I don’t want CWD to change any of that. Their challenge going forward will be to avoid having their amazing inclusiveness create a lot of smaller gatherings, rather than what has always felt like one big gathering of diabetes family.

That’s a tall order. But if anyone can pull it off, I suspect Jeff Hitchcock and his fabulous team can do it. Let’s face it: nothing stays the same. It’s not avoiding change, but instead embracing change and making it work for everyone, that helps great things evolve. And Friends for Life has always been a great thing.

In addition to that, there was one part of Friends for Life that I don’t usually pay much attention to… but it really hit me this year.

I took a couple of moments to go through the Quilt for Life exhibit that is always set up in the back of the hall. The display includes hundreds of quilts depicting various diabetes issues, interests, and people living with this insidious condition.

So to finish up, here are a few photos of quilts I noticed. I don’t know why yet, but the last one really got me, and it still does. I practically broke down right on the exhibit hall floor when I saw it. How does it affect you?

I am under no obligation to do so, but I should mention that there is one more Friends for Life gathering coming up this year, and it will be in my part of the world. Friends for Life Falls Church will be coming to the D.C. area October 6, 7, and 8. To find out more, CLICK HERE.

Markers of our time.

Back in July, when I was at the Children With Diabetes Friends for Life event in Orlando, I had an opportunity to meet a few people working with Eli Lilly & Company in Indianapolis. Eli Lilly, as you probably know, is one of the largest producers of insulin in America. They also have this nice program that awards medals to People living With Diabetes for 10, 25, and even 50 years.

When one of the Lilly execs asked me how long I had been living with diabetes, I mentioned that I had hit the 25 year mark earlier in the year, which prompted the question “Did you send in for your medal?”. I had not by then, but I had thought about it. A few weeks after that gathering, I went to the Lilly website and applied for my 25 year Journey medal. And that’s where I get to the point, the personal point, of this story.
On the one hand, it’s incredibly selfish to fill out an online form and say “Please recognize me!”. Even now, a couple of months after receiving my medal, it feels selfish. Living with Type 1 diabetes for 25 years does not make me special, and more importantly, it doesn’t make me any more special than anyone who has lived with diabetes for 24 years or 26 years, or any other number of years. Like my A1c result, it’s just a number. A benchmark.

On the other hand, I spent a lot of the past 25 years enduring crappy A1c results. Various doctors and family members, some with the best of intentions, made me feel like it was entirely my fault. Seventeen or eighteen years after diagnosis, I was being told to manage my diabetes exactly the same way I had been told to manage it in the months after diagnosis. I had heard of insulin pumps, mostly that it meant that my diabetes was way out of control. I had no freaking idea what a continuous glucose monitor was. No one bothered to tell me anything about them, and if they had, I probably would have resisted because I wouldn’t have understood their usefulness.

Things in those days were either good or bad; there was extremely little middle ground, and my fear was that the more people knew about my diabetes, the worse I would look. Once I began to look beyond just good and bad, once I started to examine the gray areas and really consider possibilities rather than punishment, my life and my life with diabetes began to change.

So I get it… I’m not special. But I have certainly earned this medal. And I’m not going to feel bad about that. Part of not feeling bad about that meant actually wearing my 25 year medal at the Diabetes UnConference in Atlantic City in September. You can’t see it, but I’m wearing it in our group photo from the event. Most people probably didn’t know I had it on, but I wanted to wear it while with a group of people living with diabetes.

These were people who completely understand the uphill climb that diabetes can be. How diabetes can take your best efforts and kick them to the curb. The emotions of highs and lows and middle-of-the-night set changes and visits to endocrinologists and ophthalmologists. The concerns about how today’s diabetes may affect our lives years down the road, and how much of it is not good or bad, but simply a game of chance.

I’ll probably pull this medal out from its case and put it on now and then. Because you know what? I really did earn this. Having a medal doesn’t make me special. But it’s a terrific marker of time, and a way to focus on the fact that I have survived for 25 years. And it’s more than okay to be happy about that.

It’s about the people.

Like I mentioned before, last week was a very busy week. Part of that week meant being busy in a very pleasant place. Mixing work with pleasure? Okay, I’ll do that.

I spent last Wednesday, Thursday, and Friday working at the DPAC booth at the annual Children With Diabetes Friends for Life event. This is the mother of all diabetes gatherings, with thousands of People With Diabetes and their families descending upon Orlando for nearly an entire week. This was my first experience being there for more than just a day, and admittedly, my experience was not the typical conference-goer experience, but here are some things I experienced and noticed during my time there.
I arrived on Wednesday morning, about an hour or so after MasterLab began. MasterLab is a one day advocacy workshop presented by Diabetes Hands Foundation. There were a number of presentations, and I hope all of the attendees got a lot out of them, or at least were able to grab a nugget or two that they can use in their advocacy efforts in the future.

What I experienced: I saw many advocates from many countries who were very much into the focus of the day, which was to advocate for everyone living with diabetes. It’s sad to know that diabetes advocacy is needed elsewhere in the world, but good to know that there are stellar advocates living in Columbia, Mexico, Puerto Rico, the UK, and other countries.

What I noticed: Much of the talk was USA-specific, which risks alienating those attending from other countries, but I’m hoping this is a temporary “we’re learning how to do this” kind of thing.
Diabetes Patient Advocacy Coalition is a remarkable resource for people living with and affected by diabetes. We were able to garner many signatures for the Dexcom G5 labeling petition to the U.S. Food and Drug Administration, which will be holding a hearing on July 21 to discuss the issue. Our goal was to get 5,000 signatures on the petition. As of right now, we’re nearing 6,000. Yay Diabetes Community! The diabetes community was able to rally to this so quickly thanks to the fact that DPAC makes it so easy for someone to add their name and voice to the issues that mean the most to us. I urge you… take a hand in your own diabetes advocacy by going to diabetespac.org and signing a petition or sending an e-mail. We do best when we speak for ourselves. Tell your story. Tell it from the heart.

What I experienced: Despite being “on stage” (to use a Disney term) most of my time there, the exhibit hall was punctuated by bursts of activity before and in between conference sessions, then amazingly slow lulls once the sessions were, um, in session. I’m not sure how I did for DPAC, but I hope I did well, and I was happy and honored to do what I could.

What I noticed: There is still an overwhelming desire for knowledge among the diabetes community, especially its newest members. During my time manning the booth, I met a pair of first-time attendees, grandparents of a young person diagnosed not too long ago. As we discussed our diabetes lives (like you do), and they expressed some of their concerns, they must have seen the “everyone’s been through this phase” look on my face. One of them looked at me and said, “You’ve been living with this for 25 years… we want to know… tell us!“, as only a grandparent can express it. These two wanted to know everything about insulin, devices, burnout, you name it. They were in the right place that week to learn about all those things. And that’s not the only conversation I had like that while I was there. This is one of the many reasons why we need DPAC.
Finally… the one-on-one, human interactions with people are what make these gatherings special. I’ve said that many times after events like this, but it is an undeniable fact. The Diabetes Online Community has been vital in bringing together people from everywhere who have felt alone living with diabetes. Especially people like me. But the internet can only do so much. While my social media connections helped me crawl out of a depressive shell many years ago, the interpersonal connections have helped me stand tall, and build constructive and meaningful relationships that will hopefully last a lifetime. It’s that much more.
What I experienced: The feeling that no matter how big my diabetes circle of friends is, there’s always room for more. It was great seeing existing friends like Karen and Bea and Scott and Mike, but it was also wonderful to finally meet Cara, and meet Tina, and meet Nia (who lives in my city!), and meet Becky, and Trip too. And almost instantly I want to hang out with these people, and advocate for them, and protect them. That feeling comes from actually meeting people and getting to know them at a level that few are capable of, because the one thing you have in common is the one thing that bonds you tightest to each other.

What I noticed: I was not the only one who noticed the absence of Medtronic at FFL. Every other pump manufacturer was there. Dexcom was there too. There are probably reasons for this which I’m not privy to, but many people noticed, and their speculation of why Medtronic was absent covered a broad spectrum of opinions. I’m not sure it matters why Med-T didn’t make it, and maybe it was okay that they weren’t there this year. But to use the word again, the absence of Medtronic allowed others to form their own opinions about products and corporate behavior, whether those opinions were accurate or not.
Because I spent most of my time working in the exhibit hall, I can’t say that I had a typical conference attendee experience. But because of these moments and others, I did have a typical, wonderful personal experience during my three-plus days in Orlando. Thanks to DHF for my invitation to MasterLab, and a special thank you to Diabetes Patient Advocacy Coalition, Christel Marchand Aprigliano and Bennet Dunlap, for the opportunity to put my mouth where my motivation is. Or something like that.

All of this reinforces the notion that it’s not about the disease, it’s about the people living with the disease. The idea that if you fall into a hole, someone will jump in to help you. Because they’ve been there before, and they know the way out. Our lives don’t get easier with our diabetes diagnosis. But knowing that others are walking the same stretch of road, right alongside us, makes us closer.

A very busy week.

Wow, I am right in the middle of a very busy week. Sometimes, things just happen all at the same time. This is one of those times.

On Friday afternoon, I began a week long vacation, which, if you think about it, is really a nine day vacaton. At least for me it is. So… do you think I would rest up, take it easy, get a little extra sleep? Yeah, right.

On Friday afternoon, I came home from work and climbed into a rental truck. We moved our dining room furniture from Maryland to Ohio. So we drove part of the way Friday night before finding a hotel to crash in before driving the rest of the way on Saturday morning.

Saturday, we wound up on Maureen’s sister’s farm outside of Cincinnati, unloaded the furniture, and spent part of a wonderful day. We slept overnight, had breakfast on Sunday morning before dropping off the rental truck, and then headed back east. We drove all the way back Sunday, which means we covered nearly 1200 miles in a little more than 48 hours.

Wait… I’m not finished.

Monday was the 4th of July, America’s Independence Day, which is a national holiday, unless, of course, you have work tasks that no one else can do for you, so you spend part of said holiday actually working. On your vacation. Greeeaaaatttt….

Tuesday went by quickly. Oh, I should mention: bad, bad low in the middle of the night Monday night. Everything turned out okay in the end, but I got very little sleep again. This vacation thing is not working like it should. Anyway, on Tuesday morning, I ran my last training run before my upcoming 5K. More on that in a minute. I also had laundry to do, and I needed to pack. I made a super flatbread pizza for dinner. Too much information?

Wednesday begins the best part of the week. I’m headed to Orlando, where the annual Children With Diabetes Friends for Life event is taking place. I’ll be sitting in on part of MasterLab Wednesday. MasterLab is a place for diabetes advocates to come together in a one-day workshop to learn about how to amp up our efforts for better access, better drugs, and better costs for everyone living with our disease. Disclosure: Diabetes Hands Foundation has invited me to attend MasterLab. They are picking up the tab on my registration. All opinions are my own.

After MasterLab, it will be my honor to head to the exhibit hall, where I’ll be working the booth for Diabetes Patient Advocacy Coalition. If you’re in Florida, please come by and use the DPAC easy button to add your signature, send your e-mails, and up your diabetes advocacy in no time at all. If you’re not in Florida this week, it’s okay. Just go to diabetespac.org, and you can advance the cause right from your own home. Thanks!

I’ll be in Florida Wednesday, Thursday, Friday, and Saturday morning before heading back to Baltimore. But wait… that’s not all!

Sunday will be my 5K, the event I’ve wanted to get under my belt for two years. My comeback event, and even though I’ll be slow, I’m really looking forward to it. I may be tired, but I’m doing it.

Monday morning, I’ll be back at work again for the forseeable future.

Here’s how I look at it: I’m in the middle of a very busy week, and I’m not going to get much rest during my vacation. But I’m crossing a lot of things off of my list, so the next time I get some time off, hopefully, I can spend some time resting and relaxing.

And don’t feel sorry for me. I chose to do all of this, at this time. I could have said no to any or all of it. But I didn’t. Because I didn’t want to. My life is full of a lot more fun and adventure today than it was back when a week off meant a week at home sleeping late and watching TV until the wee hours of the morning. I’m happy to serve the community through DPAC, and I wouldn’t trade my life right now for anything. Except maybe a fully functioning pancreas.

I’ll catch up with you next week! In the meantime, you can follow the goings on in Orlando by following the hashtag #CWDFFL16.

Friends for Life Roundup – July 6.

As I mentioned Wednesday, the d-blogosphere is blowing up about the Children with Diabetes Friends for Life get-together in Orlando this week. I was going to try and post all of the links I could find once everything was over, but there are a lot out there already and I’m very busy with home stuff right now. So here are links to everything I could find. I am very, very happy for everyone who is attending and having the time of their lives. Keep those posts coming. And look for the #FFL12 Twitter hashtag.

Here’s what I’ve found so far, in no particular order. If you know of another post that I haven’t linked to here, let me know and I’ll add it to the list. For the first time, I’m also adding twitter handles.

Diabetesaliciousness: And So It Begins
Twitter: @diabetesalish
A Consequence of Hypoglycemia: Baker’s Dozen Podcast
Twitter: @iam_spartacus
Candy Hearts: Friends for Life 2012: The First Days
Twitter: @MrsCandyHearts 

Six Until Me
: Happy 4th of July
Twitter: @sixuntilme
Strangely Diabetic: Friends for Life, Round 2!
A thin line
Twitter: @Strangely_T1
Everything Juvenation at FFL: Juvenation Live at CWD Friends for Life 2012
A Sweet Life: Friends for Life 2012: Everything You Always Wanted to Know About Carbs
Twitter: @A_Sweet_Life

%d bloggers like this: