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.
 

Like these links.

Even though I’ve really wanted to, I’ve been way too busy lately to write my own stuff. Instead, I’m going to direct you to some really great blog posts from writers I am proud to say are part of my tribe. Check them out…
 
 
Laddie Lindahl at Test Guess and Go has a superb write-up of why she often uses her Dexcom G5 CGM to make dosing decisions, and why, with knowledge and experience, she thinks you can too:
Subtracting the Adjunct from Dexcom G5

Katy Killilea of Bigfoot Child Have Diabetes talks about that sad moment when you have to say goodbye for the last time to your favorite endocrinologist. I thought the people in that photo looked familiar!
Goodbye, Dr. Pepper

Scully, AKA Canadian D-gal, and her husband Ryan are amazing athletes. Recently, they were amazing athletes who set off on a three day camping trip… on their bikes. Read all about it, including how they traveled around with everything on two bikes, as only Scully can tell it:
Bike touring/camping. Not for the faint-hearted.

Finally, Liz over at Get Ready, Get Set… Oh no! I’m Low has one of those stories (actually, two of those stories) about meeting others living with diabetes, just out in our everyday lives. I’m including it here because she tells it well, and because I just thought these two encounters might make you smile:
One of Us
 
 
Well, I have my own stories to tell, but I need to find some time to sit and write them down. Hopefully, that will be soon. What have you been reading about lately?
 

8 Things about my diabetes.

This blog is a place for me to write about diabetes, but it’s also a place for me to write about my diabetes. So today, I’m telling you eight things you might not know about what’s going on in my life, diabetes-wise:
8
1. Diabetes By The Numbers is not going away. As seems to happen with all things audio in my life, technology has let me down. I had been recording my podcast interviews through my ten year old laptop, and frankly, it’s just running out of juice. It was having trouble recording my interviews without garbling up important parts of what people were saying. If I’m going to do this podcasting thing, I want to have as good a sound as I can get. So I’ve invested in a new laptop (prices have really come down– this has more computing power for about a thousand bucks less than a decade ago). So look for new episodes of Diabetes By The Numbers soon. I don’t know about you, but I miss it.
 
 
2. I’m finally seeing doctors again. After writing about letting my appointments with various doctors slide for a while, I made a couple of phone calls. I have an appointment with my endocrinologist this afternoon, which, actually, I’m looking forward to. It’s been about 4 1/2 months since my last visit, and we have lots to discuss. I’ll let you know if there are any great nuggets that come out of this appointment. There usually are.

I’m also seeing a new ophthalmologist in a few weeks. Fingers crossed that this one is a little more detailed than the last one. Plus, I need a new prescription.
 
 
3. I’m training for a 5K run. This is my local neighborhood run, that takes place about five minutes away from my house. I had run this race every year for about ten years until I had knee surgery last June. This is my comeback run, my first athletic event in two years. I’ve lost weight in the past year, but I’m still not in great shape, so I don’t expect to do well. I don’t care. Simply put, this event is very important to me, and I will participate, even if I have to crawl my way to the finish line.

Then it’s back to the bike for a while.
 
 
4. I will be in Orlando in July. Actually, I should say I hope to be in Orlando in July, provided I can get the okay from my job to take off that week. I plan to be onsite during the Friends for Life conference, but I’m not necessarily going as an attendee. The plan is to go to MasterLab (sponsored by Diabetes Hands Foundation, which is letting me attend for free) on July 6, and then I’ll be working in the exhibit hall on the 6th, 7th, and 8th. If you’re going to be there, please come by and see me… there’s something I want you to do, and it will help all of us living with and affected by diabetes. I mean it.
 
 
5. It won’t be long before September is here. And September means… the Diabetes UnConference Atlantic City, September 9-11! In case you’re wondering, yes, this is the weekend of the Miss America pageant, which is held there each year, and while those festivities are occurring, scores of adults living with diabetes and the people who love us will be getting together for the only peer-to-peer conference of its kind. We’ll be talking about all the psychosocial aspects of living with diabetes 24/7/365. There will also be fun get-togethers, new friends made, lots of acceptance and support, and probably some hugs too when the UnConference makes its way to the U.S. east coast for the first time. Check out the super team of facilitators. I’ll bet you can recognize one or two.

More to come as deadlines near. I don’t want you to miss out on anything! To find out more, CLICK HERE. In case you haven’t figured it out yet, I will be one of the facilitators in Atlantic City this September, and I can’t wait.
 
 
6. I will be hosting DSMA next week. I’ve been keeping to about a once-per-month schedule moderating the fastest hour of the week, the DSMA Twitter Chat, which happens every Wednesday at 9:00 p.m.(US). The other moderators are (of course) Cherise Shockley, Kelly Kunik, and Chelcie Rice. The DSMA chat is great fun, and it’s a great way to meet others from the diabetes community, all while answering prompts from the moderator. It’s been a great honor to help lead the community discussion on both important and fun topics, and that honor continues next week.

If you’d like to participate, it’s easy. First: get a Twitter account. Second: follow the @DiabetesSocMed Twitter handle and/or the #DSMA hashtag to participate. Come and join the conversation!
 
 
7. Still going on the Animas Vibe pump. I’ve been on the Vibe for about six months now, with a short break in April (I ran out of supplies– I’ll get that worked out with my endo today). Overall, the pump has been durable and delivers insulin like nobody’s business, but there are definitely things I don’t like about it. No use complaining anymore… I’m stuck with this one for another 3 1/2 years. Boo on the local trainer who was going to get together with me to show me some of the more intricate features of the pump. I got sick just before we were scheduled to meet, so I had to cancel. After that, repeated phone messages have been met with only silence. Maybe I can hit up the people working at the Animas booth in Florida for a quick tips and tricks session.
 
 
8. My diabetes circle is getting bigger. I work in a building with about 500 or 600 other people. Lawyers, admin assistants, architects, financial wizards. Just a couple of years ago I didn’t know anyone there who was living with diabetes. As far as I knew (though I knew it wasn’t true), I was the only one. Well, now I know three, two Type 2s, and a Type 1 who is wearing the same insulin pump that I wear. He got his first. It’s a double edged sword, really… I’m happy to know there are a few others around who get it, but I’m not happy that they have to live with this stupid condition too.
 
 
Okay… so that’s what’s happening in my world lately. What’s new with you?
 

Community.

I speak to you today in praise of the Diabetes Community.

Multi-faceted, multi-talented, multi-country, multi-cultural, it is the living embodiment of selflessness and inspiration. Its accomplishments are many, and its biggest challenges remain to be conquered. For every advancement, every success, failures of our healthcare systems and of our own endocrine systems means our efforts are not complete.

There is much to be excited about. We are connected as never before, through social media and patient-centric organizations. Blogging is still a thing (at least I hope it is), and this community can boast writers that are among the best around at telling their stories of living with a chronic condition. In the past year, podcasting about diabetes has taken off again, and that gives people a chance to hear the latest without actually having to read the latest.

And there are the athletes. Reaching the heights of their chosen sports, amateur or professional, climbing Mount Everest, winning auto races, playing in the National Hockey League. Riding 100 miles on a bicycle, for no other reason than to help raise money for research toward a cure. There are organizations that encourage and help get people moving so they can simply remain as healthy as possible, for as long as possible.

This community is full of passionate advocates, who see a need and try to fill it, or see a wrong and try to right it. Advocates who speak before Congress, who speak before regulatory bodies, who debunk long-established myth and self-serving stigma to anyone who will listen. God bless them. As we break down more barriers going forward, I hope we can find a way to turn our short-term advocacy efforts into sustained, long-term advocacy movements. In the end, a lot of advocacy is simply outlasting those who oppose us.

There are increasing numbers of healthcare professionals living with diabetes, and many who don’t live with diabetes but support us in ways we couldn’t have dreamed of a generation ago. I like how their profession allows them to have both a unique perspective on our disease, and an even bigger motivation to educate all of us about the importance of never giving up on our own self-care.

Yet, there remain difficulties. For every person running a marathon or leading a local support group or participating in a clinical trial, there is someone who lives with depression or burnout that they never counted on when they were diagnosed. There is someone who goes to a doctor once a month to get injections directly into their eyes to help reduce the ravages of diabetic macular edema. There is someone who works hard every single day to even out the roller coaster of glucose readings they see on a continuous glucose monitor. Their issues are not going away, so we should continue to show them the love and support they so richly deserve.

Being part of the Diabetes Community includes things like giving so that children living with diabetes in developing countries don’t also live with a death sentence. For many, it includes occasional happy gatherings full of laughter and hugs and bolus-worthy delights, living life to its fullest. It’s a unique language and an extra set of superpowers that none of us ever thought we would possess, but do anyway because it can literally mean the difference between life and death during tense moments for ourselves or our loved ones.

Diabetes isn’t something that happens to just us; it’s something that happens to all of us. All of us in this community are affected by the successes and frustrations that each of us experience every single day of life with a disease that is with us every single day. It is right that we commiserate in the sadness of a high A1c result or the passing of a close friend. It is equally right that we rejoice together in goals met, children raised, and new technology that makes us safer. Having to live with diabetes is the worst part about my life. Getting to live with diabetes people in my life makes me a better person.

“When I am with a group of human beings committed to hanging in there through both the agony and the joy of community, I have a dim sense that I am participating in a phenomenon for which there is only one word… glory.” – M. Scott Peck

“I have found the paradox that if I love until it hurts, then there is no hurt, but only more love.” – Mother Teresa

Communities are not buildings or monuments or parks. They’re made up of people. Our shared situation and our singular desire to compassionately relieve and delay and eliminate the burden of diabetes unite us as a community in a way few other things can. As each new day dawns, I take solace in the fact that even though my pancreas is faulty, my heart is full.
 

What’s Next?

Like you probably did, I read Kerri Sparling’s blog post about how she’s still unhappy that nothing has happened since the United Healthcare/Medtronic Diabetes dustup. Like her, I can sense the dust settling at this point, and I wonder if anything meaningful will come of all our vitriol just a month ago.

I’ve thought about this from time to time since the announcement was made back in May, and I’ve come to the conclusion that there are some things I know, and some things I don’t know about all of this. While we know the issue, and what’s at stake, we all undoubtedly feel a sense of resignation, that “this is how business works and there’s not much we can do about it”.

Well, that may be true. Maybe there’s nothing we can do about it. I don’t think it’s that simple though. I do know that if we’re going to turn the tide of businesses trying to rule our access to tools designed to help us be as healthy as possible, certain things need to happen. In no certain order, here are just four of those things.

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Holes need to be poked in this arrangement. I’ll bet you can state one or two things that are wrong about this business deal right off the top of your head. We need to find more things that are wrong with this, and point them out, over and over again, to anyone who will listen. We need to find out things that are wrong about the businesses and the people running those businesses that are wrong. I’m not advocating personal attacks, of course. But is there a track record here that needs to be noted? Maybe an indicator of what’s to come based on similar tactics these companies/people have employed in the past? And we need to keep hammering those points home. In the current business climate in the USA, these people already know that they can get away with making arrangements that only suit themselves and not patients. We need to make it uncomfortable for them to do so. As uncomfortable as possible, even if it’s one blog post at a time, one insurance claim at a time, one protest at a time, one person standing up and stating what is right. We cannot let injustices go without standing up and pointing them out. Over and over again.

Tweak the message. Why do you think JDRF gets such big dollars for research? Let me ask you another question: do you ever see someone like me in JDRF literature? Of course you don’t. That’s because even though I have the same disease as a cute ten year old, time and again people will react positively to the message that a child doesn’t deserve to live with this, even if I’ve been living with it for at least fifteen years longer.

Okay, I’m a little off topic here, so let me bring it back to the issue at hand. Anger is good… it gets our blood flowing, it’s often the catalyst for developing platforms for change. But if you can’t tell a story, a compelling story, a heart wrenching story about why all patients need access to the best care and drugs and devices, people are going to question why they should care. This is where I’m at a disadvantage. I’m good at telling you what’s happened, but I’m not always good at making it overwhelmingly compelling. But I know I need to do that. We need to turn our outward message of anger into inward concern for actual people. And quickly.

These companies need to be hurt where it counts– in the financials. Sorry to be the one to tell it so bluntly. But let’s face it: by and large, as long as company execs are getting their bonuses, they really don’t care about you or I. This deal falls apart when it no longer makes financial sense, from either a corporate or a personal point of view, for it to continue. I don’t know if that means we find a legal way to keep them in court fighting for their stupid deal (and fund the fight), or if that means we encourage a boycott of United Healthcare and Medtronic for years to come, or if it means that we encourage patients to find ways to make United Healthcare pay more in claims under this agreement (which they would fight). But when the money is no longer there for this deal, there will be no reason for it to continue.

Relentlessness. Do you think The CEO of United Health Group, or the President of Medtronic Diabetes are actually thinking about any of this anymore? They’re not. Of course they’re not. They knew that there would probably be an initial reaction. They knew that the initial reaction would probably die down. Now they’re just going on with their lives like nothing ever happened. You’re just a dollar sign… you’re not a person to them.

I’m not a big believer in the fact that everything needs a coordinated effort to accomplish a big goal. But here’s one instance where a little coordination could come in handy. I’ll give you an example: sit-ins at lunch counters in the south back in the 60s. White authorities were sure that all that was needed was to arrest the African-Americans sitting at the segregated lunch counter, and it would all be over. But as soon as the initial protesters were arrested, new protesters immediately came forward and sat down in their place. Authorities only thought there were a few protesters… they didn’t count on many, showing up over and over again. That’s what we need.

As a community, our initial reaction to all of this was wonderful, and creative, and even inspiring. But now there’s nothing. A coordinated effort that has one person writing about it this week, another meeting with their elected officials the next week, bombarding state insurance commissioners the following week– that’s how we start to chip away at the wall that’s been built between business and patients. Little by little, over and over, never giving up, until we either force an end to this type of practice or make it unsatisfying for companies to engage in this kind of behavior in the first place.

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As U.S. citizens, we believe in our original Declaration of Independence and our Constitution, which promote the idea of choice as a basic right for all people. Those documents don’t say anything about the right to squeeze out as much profit as possible, or that doing so at any cost to patients is okay.

I don’t have a great plan, or anything nearing all the answers. But I do know that the one thing we can do, all of us, is continue to assert that our human right to choose is the most important message in this debate. You think this collaboration between UHC and Medtronic fosters innovation? I don’t care if it does… it destroys my right to choose (and it doesn’t foster innovation– quite the opposite). You think it gives patients a best-in-class platform to manage their diabetes? I don’t care… it destroys my right to choose, today and in the future, so if a better product becomes available, I might be unable to choose it. You think having a “clinical exception process” in place for people who want to choose a different option actually proves you’re still allowing choice? You’re wrong… it destroys my right to choose, and it gives other greedy businesses a template for denying choice, and I’m not okay with that.

This attitude needs to be here, on the faces of the Diabetes Community, in every interaction with these entities, until policies like this are a thing of the past. They’re only trying to get everything they can. I’m fighting for what I want too, and what I want is more important. And I am not ashamed to say so. Yesterday, today, and tomorrow.
 

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