If you have diabetes, it’s Friday, one day out of… the rest of your life.
You’ll be inundated by social media mentions of WDD and the color blue (chosen as the patron color of awareness) will be worn by those in the know. I had planned on telling you all the events and excitement that is going for World Diabetes Day, but instead, I woke up with this in my head…
This I Believe
I believe that if your pancreas doesn’t work as it should, you are part of my community. This means my voice is yours to raise if you want to help the community as a whole. This means I will champion for you, no matter where you fall on the “pancreatic spectrum”.
I believe that all 382 million people living in this world with diabetes today deserve to live their lives without discrimination, stigmatization, or finger-pointing. Diabetes doesn’t discriminate. Neither should our community.
I believe that diabetes awareness begins with me. The more I understand about my diabetes, the more comfortable I am passing on the right knowledge to others, be it friends, strangers, or the general public.
I believe that I have a duty to educate people about diabetes without prejudice or anger. We are not a house divided; some individuals with one type of diabetes has been helped by another’s research. To silo us is to separate us and the potential to learn from each other. I do not expect the general public to understand the difference between different types of diabetes, just as I do not purport to know about all of the different types of cancer. They are all devastating and have different courses of treatment, just like diabetes.
I believe that it doesn’t matter what diabetes is called. I have it. Mine might be different from yours, but in the end, our goals are the same: to live long and well with as few complications as possible.
I believe that access to technology and treatment should be available to all. Regardless of where you are, what you do, if you have insurance or live a life of privilege, we do not have a choice.
I believe the fault is in our genes, not in our choices. No one “chooses” to have diabetes and to berate or belittle someone for a perceived lifestyle discounts the science showing that most diabetes involves a genetic predisposition.
I believe that the impact of diabetes is not just on our bodies, but our psyches, wallets, and families as well. There is not enough treatment effort given on the psychological aspects of living with diabetes, not enough financial assistance given for those living with this chronic illness, and not enough support to those who love us. This needs to change.
I believe that a cure will not be the end of living with diabetes. I will always live with the vestiges of this disease, even if there is a cure found. The damage that has been done to me by the disease will live on long after a cure. There will be no way to undo what diabetes has given to my body and my mind.
I believe that we all have work to do for diabetes, using what talents we have. For some, it’s advocating, fundraising, or awareness. For others, it’s the important job of living gracefully and with dignity. We all matter in the work we do.
I believe that we cannot live a life of diabetes alone.
I believe in the power of community.
I believe in us.
This ain’t no Rog and Rerun post, but here’s their picture just in case you wanted to take a moment and remember life in the 70s.
Now that: “Hey, hey, hey!” is in your head, let’s move on quickly.
If you haven’t heard ::insert tongue firmly in cheek::, it’s Diabetes Awareness Month. Last year, I tried to give some basic information that you could share with others (including the sexy woman analogy to insulin, which is always worth a second read and a hearty guffaw), but this year… I’ve been busy doing some other things that have left me very little time to write.
DTS Payers Meeting (Which Was Poorly Named)
Last week, I was honored to sit on the Patient Perspective panel at the Diabetes Technology Society’s Payers Meeting. It was supposed to be a meeting where payers and patients and people (alliteration!) with stakes in the game of diabetes were to engage in a dialog. While the meeting was worthwhile and full of dialog, only ONE payer (and a second person who plays a fringe role in the payer world) actually spoke. (There was a CMS representative in the room, but she refused to identify herself as a payer, but we all knew who she was. She may have been on strict orders to not speak or engage, which was probably a wise idea, seeing as her performance last year in a DTS meeting gave CMS a black eye in the community.)
If you’re interested in what was discussed, Amy Tenderich over at DiabetesMine captured the overall meeting (and the feelings around it) so concisely that I’m telling you to click on this link and go read the recap of the DTS Payers Meeting.
The Diabetes UnConference
Then, having forgotten my past life as a road warrior for my previous career, I flew home and less than 12 hours later, was back at the airport headed to Vegas for The Diabetes UnConference site visit. I needed to be face-to-face with the chefs as we discussed the foods being served to our celiac attendees. For me, it was crucial to express the “this is not a fad diet for these individuals, so treat it like a nut allergy” feeling. The chefs completely understood and gave me suggestions that will ensure not only will the menus for our celiac diagnosed attendees are gluten free, but delicious as well.
And I got to tour The Flamingo’s campus. I’ve been to Vegas hotels where the rooms and the conference space are almost a mile walk (A convention in the MGM Mirage has you wishing for a foot massage before you even get to the exhibit floor). Not this place. They actually have a section of rooms that are right near the conference space and even the main section of rooms make it easy to get to where we’ll be. There’s a wide variety of food options (both in price and type) there - and even better? We’re right next to The Linq, which has more food options, a 24 hour Starbucks, and a Cupcake ATM. Yes. You read that right.
I’ll be focusing on The Diabetes UnConference logistics for the next several weeks, so expect to hear a
little lot more about the amazing events that will happen because of this event. I’ve got so much good news that my little brain is bursting.
Thursday, November 13th
World Diabetes Day is November 14th, so everyone is trying to pack in something before WDD. ::Sigh:: It’s not like we don’t have diabetes the rest of the year, but OK…
FDA Public Workshop - Regulatory Science Considerations for Software Used in Diabetes Management
This is happening all day, so if you need me, I’ll be sitting in front of my computer, watching the live stream. (Unfortunately, online registration for this webcast is closed.) If you’re curious as to what the heck this is all about, amazing advocate Stephen Shaul has what I believe is the the most eloquently crafted post ever about it. This impacts all of us, and it’s so crucial to have a patient voice in the mix (heck, a whole choir of patient voices). I’m interested in hearing Howard Look of Tidepool speak, because I so believe in what they’re doing.
Emerging Technologies to Improve Glycemic Control among Persons with Diabetes: A Healthy People 2020 Spotlight on Health Webinar
HealthyPeople.gov is ALSO holding an interesting webinar on Thursday, November 13th and YOU CAN REGISTER HERE TO ATTEND ONLINE. This will be from 12 - 1:30pm Eastern, so my lunch will be eaten while watching this. According to the info, webinar attendees will learn:
- About evidence-based and emerging mobile technologies that can help improve glycemic control;
- How persons with diabetes and their caregivers can use mobile and emerging technologies to improve their health; and
- How mobile and emerging technologies fit into larger health information technology initiatives.
Diabetes: Slowing the Epidemic
My friend, Scott Johnson, let me know about this live stream event. It will be from 8:30am to 12:00pm Eastern, so I’m missing it as I’m on the FDA Public Workshop stream, but you can watch it through the live stream on your computer. This Washington Post forum, featuring many of the nation’s top experts, will look at how to prevent, diagnose and treat the chronic disease that can cause so many other health problems, including kidney, nerve and eye damage. They’ll have a mix of speakers, including some patients and Dr. Robert Ratner from the ADA (I like that man a lot!), so I encourage you to attend if you can.
And Coming Up…
World Diabetes Day is November 14th. You have options… and I’ll share those on November 14th, but I’m sure you probably already know most of them. (But even so…)
That’s what’s happening in my world. What about you?
The last three A1Cs.
My CDE asked a simple question:
“What do we need to do?”
I love that she thinks she can help. That she can do something. But I know better.
I’m a creeper. And I know why I’m creeping up, but I’ve been ignoring it.
I’m ignoring the beeps and buzzes of my Dexcom. John will hear it go off - in the other room, because I can ignore it more effectively if it’s not near me - and he’ll say: “Your diabetes is going off.” I’ll nod, say: “It’s high.” or “It’s low.”
Actually look at it? Well…
Take action on it? Well…
Sometimes it takes someone else to point out that you’re creeping. After I went to my latest appointment, John told me that he’s noticing that I’m not doing anything after I see my blood glucose level on a screen.
“Why? What’s stopping you from doing this when you know it will help you?”
The lows are scaring the hell out of me, because I’m not feeling them until they are so bad that my heart is pounding and I’m in panic mode. The highs are safety. And when they’re too high for too long, my action is to SWAG to bring it down, but never so much that I’ll be at 100. I want to feel safe. And I also know that I don’t have to be as vigilant if I know I’m high . And that’s dangerous.
“What do we need to do?”
It’s what I need to do.
Take action. Take care. Listen to the technology that I do have to help. Do it.
I’m not burned out, but I’m in that headspace where my own diabetes becomes a distant hum of a gnat I can’t swat, so I let it buzz.
My CDE and I upped my basal rate, looking at the graphs that were in front of us, and I’m hoping that the highs will stop being so high - and I’ll work on listening to the Dexcom.
It takes listening to others sometimes to make a change happen. Listening to your medical team, your family and friends, and the DOC. (Because, DOC, knowing that I am not the only one who does this makes me feel not so alone.)
And then doing it.
So, thank you to my CDE and John and the DOC for being the “we”.
I’m done creeping for now.
Being an e-patient is one thing. Being an actual patient is another.
My finger is detriggered. You would think that after four of these (actually five, but one got done twice) surgeries, I would remember that the healing process takes time…and painkillers are needed to do the exercises to get my finger to fully extend. What I do remember is that it is so important to do the exercises, as much as it hurts, because otherwise… you can negate the whole purpose of the trigger release.
It’s a few days post-surgery and The Kid has developed a fascination with my stitches. I have stooped to use them for bribery. “If you put your pajamas on, you can look at them.” Anything to speed up bedtime.
The world continues to revolve while I am recuperating, so as I gather thoughts about last week (I was up in DC and have a head full of good things to share), I’ll give you some tidbits that you should know about:
- Kim Vlasnik made me cry. Not the Victorian-dab-your-eye-with-an-embroidered-hankerchief quiet cry, but a keening, gasping, aching cry. Her MedX talk captured the essence of what endures beyond the physical and why our community is important. I want to thrust my iPhone at strangers and shout: “Watch her. Listen to her. This. This.”
- Like treasure hunts? The International Diabetes Federation apparently does and is giving prizes out as a run-up to World Diabetes Day (November 14th). Here’s the details. You get pins, bracelets, t-shirts, and bragging rights.
- Yes, it’s almost Diabetes Awareness Month. Much like every year, we will begin to see posts from well-known organizations about the disease and people getting angry that this building and that building won’t light up blue for diabetes when they lit up pink the month before for breast cancer. Here’s a tip: take that anger and put it towards what YOU can do to help raise awareness or advocate for you, your family, or strangers with diabetes in your community or your government. We can light a candle or curse the darkness. You pick. Don’t know where to start? How about here. Or here. Or create something all your own. Every voice matters.
- The World Diabetes Congress (which will be in Vancouver) is calling for abstracts, beginning in February. They are providing 100 grants to attend for individuals from all over the world, which includes the registration and travel costs. What’s my beef? You must be 40 years of age or younger. I’m sorry, but that’s NOT right. I get that there are bright, young individuals who have things to say and want to learn… but there are also those who happen to be over 40 (ahem) who also have things to say and want to learn. To attach an arbitrary cut off age like this is… unacceptable. Yes, I’m going to inquire. Yes, I have something to say about it.
- Heroes sometimes wear shaggy coats. A Sweet Life, one of the best diabetes community media sources, is fundraising with Marjorie. Don’t know who she is? You need to know why she’s important to every.single.one.of.us. - and then help support A Sweet Life.
Off to do my hand exercises, which makes me look like I’m trying to channel The Bangles’ lead singer.
Walk Like An Egyptian.
Today is World Diabetes Day. We don’t party with funny hats and beer with limes in them, or funny hats and green beer, or funny hats and…O.K., so we may party today with funny hats. (In fact, I’m headed to the Diabetes Mine Innovation Summit in Palo Alto, CA right now. There will be some well-deserved celebration with other people with diabetes tonight.) But diabetes is no party.
I’m going to give you some numbers, because numbers are solid and tangible and can be referenced to something. (Feelings and opinions make for lousy quadratic equations.)
- There are more than 371 million people in the world with diabetes.
- My blood glucose has been as low as 28 and as high as 778. (Got a thing for numbers ending in 8, my body.)
- 79 million people in the United States have “pre-diabetes”, meaning they are at risk for developing Type 2 diabetes without making lifestyle changes.
- In 2012, the direct medical cost in the U.S. for diabetes was $176 billion. (Yes, with a B. Billion.)
- I’ve checked my blood sugar approximately 44,530 times.
- Diabetes is the 7th leading cause of death in the United States.
- A single vial of Humalog insulin is $148 without insurance at my local pharmacy.
- People with diabetes spend an average of $13,700 per year on medical expenses; about $7,900 of that is attributed directly to diabetes care.
- The risk for stroke and heart disease is 2 to 4 times higher among people with diabetes.
- There are more than 3 million Americans with Type 1 diabetes - 85% of them are adults.
- Diabetes is the number one cause of kidney failure, nontraumatic lower-limb amputations, and new cases of blindness among adults in the United States.
- 4.8 million deaths in 2012 (the last time global mortality data was compiled) were caused by diabetes.
- 80 people each day are diagnosed with Type 1 diabetes in the United States.
- Those with type 1 diabetes are living around 11 to 14 years less, on average, at the age of 20 to 24 years than those in the general population; this figure drops to 5 to 7 years less at age 65 to 69.
- I’m 43.
What’s the point of World Diabetes Day?
The World Diabetes Day campaign is led by the International Diabetes Federation (IDF) and its member associations. It engages millions of people worldwide in diabetes advocacy and awareness. World Diabetes Day was created in 1991 by the International Diabetes Federation and the World Health Organization in response to growing concerns about the escalating health threat that diabetes now poses. World Diabetes Day became an official United Nations Day in 2007 with the passage of United Nation Resolution 61/225. The campaign draws attention to issues of paramount importance to the diabetes world and keeps diabetes firmly in the public spotlight.
Why today? It’s the birthday of Frederick Banting who came up with the idea leading to the discovery of insulin in 1922. So, because of him (and Charles Best), I’m alive today.
And that’s a good enough reason to put on a funny hat and celebrate.
(Thanks to IDF, the U.S. Government, ADA, and JDRF for these statistics.)