I’m lazy. There. I said it. My cardiologist even told me: “You’re lazy.” (I like medical professionals who don’t beat around the bush.)
I need more exercise. O.K., I need to starting doing some exercise.
Ironically, Novo Nordisk contacted me a few days after my doctor’s appointment and asked me if I would participate in their #LaceUp4Diabetes campaign to show how we can take steps to reduce the risk of diabetes (or in my case, reduce my laziness and my blood glucose levels at the same time!). Of course, I said: Shoelaces?! Count me in!
I’ve got five extra sets of laces and I want to send them to five lucky random people within the next few days, so they can participate in the #LaceUp4Diabetes campaign on World Diabetes Day (November 14th…)
Here’s how you can get these sweet (yep, pun intended) laces:
Take a picture of you in your sneakers. (Points for creativity, you know! Think outside the box… or the sneakers in this case. Please do wear clothes.) Then, by Monday, November 9, 2015 at 5pm:
Instagram the pic using the #LaceUp4Diabetes as a hashtag and theperfectdblog in the caption (this way I’ll know it was meant for this giveaway!)
Facebook the pic using the #LaceUp4Diabetes as a hashtag and upload it to ThePerfectD’s Facebook page: https://www.facebook.com/ThePerfectDWhat? You aren’t a fan of this page yet? All the cool kids are fans. Come jump off a bridge with us!
Tweet the pic using the #LaceUp4Diabetes as a hostage and mentioning @theperfectdblog in the tweet. Don’t follow me yet? Follow me. I’ll lead you down the primrose path or the yellow brick road or the rabbit hole, but I promise it will be fun!
I’ll select five lucky people based on creativity and ingenuity and the results from the swimsuit competition.
I’ll announce the crazy people who participated and won on Tuesday, November 10th.
#LaceUp4Diabetes – I’m Giving Away These Sweet Laces, Too!If you’re selected, I’ll ask for your email and mail address and I’ll ship these laces out to you ASAP so you can have them by November 14, 2015.
You don’t have to have diabetes to participate. You just have to want to help take a single step towards diabetes awareness.
As for me, I’m going to take a step. I’m joining a gym and will make it a priority to work out three days a week, even when I’m traveling. I’m packing my sneakers with the laces that remind me that I have the power to help myself…
Disclosure: Novo Nordisk sent me six pairs of shoelaces with no instructions. I’m doing this giveaway of my own free will and sending these to five people (because I kept a pair and laced them up on my sneaks…) of my own money (which I wish was free). They didn’t ask me to write about this. They didn’t ask me to share anything. We are a community. Sharing and helping and supporting is what we do.
The diabetes world is familiar to me. I know where to get the latest information on research, which blogs cover certain topics, where to connect with others, and who to talk with to get a different perspective on daily management. It’s comfortable. It’s safe.
But I have travel companions – my new partners. And that’s what this year’s Team of Advisors is all about. These partners are 13 incredible individuals who willingly share their data, their experiences, their strengths, and most importantly, stories of their journeys. We’ll be examining the definition of partnerships in healthcare, then creating resources and ways for partnerships to blossom between industry, researchers, health professionals, and patient communities.
What Is PatientsLikeMe?
PatientsLikeMe brought the team together to their Cambridge headquarters for an intense initial meeting. The founders, Jamie and Ben Haywood, began Patientslikeme to find a cure for ALS (their brother, Steven was diagnosed at 29.) When they talk about their brother and why PatientsLikeMe is important to them, the passion is palpable. Despite the fact that Steven passed away, Jamie still talked about him in the present tense in our meeting. (I’m not sure he even realized he did that.)
Here’s Ben, sharing the story of PatientsLikeMe at TEDxCambridge:
Not content with gathering research data for just ALS, the site now allows for tracking of thousands of conditions. Members can input their data and instantly update how they feel. Daily tracking for most conditions can help show trends that can be helpful in medication dosing. The forums for many conditions allow members to talk about what works for them and what doesn’t. For many chronic illnesses, the data shared can help researchers and companies provide better drugs, examine how clinical trials are run, and if organizations are asking the right questions.
FDA and PatientsLikeMe
They’re collaborating. Yep. This makes me do a happy dance. Patient reported data is necessary. Aggregated patient reported data is sometimes hard to access. PLM (PatientsLikeMe is helping.) Here’s the gist:
PatientsLikeMe and the U.S. Food and Drug Administration (FDA) have signed a research collaboration agreement to determine how patient-reported data can give new insights into drug safety. Under the collaboration, PatientsLikeMe and the FDA will systematically explore the potential of patient-generated data to inform regulatory review activities related to risk assessment and risk management.
Where Do They Get The Money to Run PatientsLikeMe?
This is the reason why I love what they’re doing… they are firm believers in transparency. Straight from their website FAQ page (and easily found…):
We take the information patients like you share about your experience with the disease and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.
By selling this data and engaging our partners in conversations about patient needs, we’re helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients.
PatientsLikeMe is a for-profit company (with a not-just-for-profit attitude). Every partnership we develop must bring us closer to aligning patient and industry interests. Our end goal is improved patient care and quality of life.
All too often, we question motives in healthcare. (How many times have you heard: “There will never be a cure for diabetes because there’s too much money being earned by companies treating it…”?) By openly sharing their intent and not hiding, I want to help. So I am.
Who is on the Patient Team of Advisors?
Men and women from across the country with different life experiences, strengths, and conditions. ALS, MS, Type 1 diabetes (me!), Fibromyalgia, metastatic cancers, Parkinson’s, Bipolar II, Lupus, PTSD and depression conditions are being represented this year. We spent our time getting to know each other and learning about what makes us patients.
By the end of the meeting, our discussion was not about our individual diseases, but how we can work together to create better partnerships in the world. This big world of healthcare that encompasses much more than just patients. I’m ready to be more than a patient. I want to be a partner.
Postcards from Me
Expect to hear from me about my journey this year with PatientsLikeMe and the things I learn from my fellow team partners. Some of it will be fun – some of it won’t. But it’s important to step outside of your own comfortable space and explore. I’d love to hear from you about what you’d like to learn – so we can travel together.
People with diabetes know how to pack for a trip… so I’m ready. Off I go…
Disclosure statement: My lodging and travel expenses were paid by PLM to get me to the kick-off meeting. This is a volunteer position and I am not paid to endorse or share information about PatientsLikeMe. My thoughts and words are, as always on this blog, my own.
“Where’s the damn cable that works with this? ARGH.”
John hands me one after another as I clumsily attempt to connect the correct USB charger to my Dexcom receiver. We’ve got lightning cables, USB micro cables, USB 3.0 and 2.0 cables strewn all over our house. We’re a wired family. We even have a cable “coffin” where older, no longer needed cables reside (but we won’t throw them away, because you.never.know.).
My diabetes exhausts me sometimes and not just physically or mentally. With the technology available these days to us, I have now added mechanical to my list.
The mechanical tools I use to manage my diabetes include: iPhone, iWatch, insulin pump, continuous glucose monitor and glucose monitors. I’m like an electrical junkie that’s always looking for a fix. (My friend, Briley, once snapped an image of me after I got out of my car. I was charging my Dexcom through the car adapter and forgot to disconnect, shutting the door on the cable.)
Much like our community’s desire to have a universal uploader and standard operability for our devices, I wish that the world would just settle on one charging method. My phone connecter won’t charge my watch and the watch connector won’t charge my Dexcom and my Dexcom charger won’t charge one of my glucose monitors…
I am on a constant quest for power to charge/recharge these devices and when a get a notification that one of these devices are low on juice, it triggers a tiny anxiety that grows until I get connected to a power source again. These tools help me to manage my diabetes but along with alarm fatigue (when you hear the beeps and buzzes so often that you begin to ignore them, to your own detriment), I’ve come to realize that these devices are also creating a type of exhaustion that I can’t seem to quit. It’s mechanical.
Of course, you’re telling me that I could just stop using the devices. Sure. That’s an option. And I also know that the next generation of devices may have better battery reserve capacity and my quest for power may not send me into a tizzy. I made the choice to use these devices, but sometimes the side effects include exhaustion. They don’t list “mechanical exhaustion” on the warning label.
But I know that I’m not alone. It’s much like the feeling you get when the alarm on your pump tells you that there’s a finite amount of insulin left in it. You’ve got to add that to the list of other things in your life.
What would you do to help keep the mechanical exhaustion at bay? I’d love to know. In the meantime, I’ll be carrying around four different cables, looking for a place to plug in to stay healthy and on top of my diabetes.
Please excuse the insensitivity of this rant, as it’s full of first world complaints. I recognize that for many individuals, access to these devices are impossible, improbable, or downright unaffordable. As a family, we’ve made decisions to pay for these tools, eschewing other “luxuries.” These tools are my family’s luxury, as John feels that having me healthy is a necessity.
I thought that this would be an easy book to read and an easier review to write.
After all, Michael J. Fox explained:
“This book is so much more than a heartwarming story about a triumphant girl and her amazing dog. It’s a book about never giving up hope.”
I’ve read about hope. I’ve read about people with diabetes and their triumphs. Add a dog to the mix and even more entertaining. Easy.
I couldn’t get through the first chapter without sobbing. I had to put the book down and walk away. Once I got up the gumption to attempt a second chapter, I found myself wiping tears off the pages.
Stefan Shaheen, Elle’s mother, wrote this book about her daughter with help from Mark Dagostino, a NYT bestselling author, but it was Elle’s diary entries beginning the chapters that impacted me the most. Chapter 1, Diagnosis begins with:
“I was so scared. I actually thought I was going to die.” – Elle, age 12.
I don’t know what it’s like to have a child diagnosed with Type 1 diabetes, although The Kid is four and we don’t know what the future will bring.
I do know, however, what it’s like to feel sick and think you are going to die. I scribbled in my diary at twelve:
“I’m drinking a lot of OJ and water. A lot. I’m thirsty all the time. I’m tired all the time. I don’t know what’s wrong with me. I know I should tell my parents, but I’m scared.”
Reading of the days leading up to her diagnosis sent me back in time to my own pre-diagnosis days. For those of us who live with a chronic illness and can remember those days before, it’s a tough chapter, regardless of the chronic illness you have.
The lack of knowing what’s wrong, but knowing something is not right is universal when it comes to health. Elle’s attitude and her parents’ attitude were normal, because nothing is never normal again.
The second chapter was also difficult for me, because Shaheen delved into the statistics that I abhor. These statistics need to be shared and shouted, because diabetes is an invisible illness. Many of us work very hard to “look normal” and not let diabetes rule our lives, but the book eloquently shares how diabetes doesn’t care how you look or if you want a break. Elle’s first diaversary was also her first seizure.
I wanted to kiss Stephany when she shared her frustrations about daily life with diabetes and how disruptive it can be – and not in the way one would think. It’s not just checking blood glucose and ingredient lists; it’s hours arguing with insurance or pharmacies or ferrying supplies to different locations. It’s the constant nagging feeling in the back of your mind: “What’s the latest blood glucose? Did I give too much or not enough insulin? Where are the juice boxes?” It doesn’t stop. Ever.
The grin slowly grew as I read:
This cannot be as hard as it seems, I thought. It’s 2007, for crying out loud!
And then the grin faded as she shares the heartbreak of Elle apologizing for a low blood sugar. I apologize to John all the time when I’m low. It was painful to read the reaction from a loved one. I don’t get to see it from the other side.
Elle does get a service dog named Coach, and I don’t think I’m going to give away any spoilers in sharing that he has assisted her in her daily diabetes management that goes beyond what a continuous glucose monitor can do.
And here’s why I love this book: this is not a “…and they all lived happily ever after.” Stephany doesn’t pollyanna this experience; she was reluctant to get a service dog. Elle was denied by a camp director going back to a summer camp that she attended post-diagnosis before she got Coach. Elle still has diabetes. (Wait, is that a spoiler?)
The story is heavy on the Shaheen side of the family (they are a prominent family from NH; Stephany’s mother is a member of Congress and former Governor) and detracts from the story of Elle and Coach. (Elle’s dad has a brother with Type 1 diabetes, but after a few brief mentions, is excluded from the remainder of the book.) Not everyone gets to meet Dean Kamen and Michael J. Fox and other celebrities without the connections the Shaheen family developed through politics. The side stories were superfluous.
It also focuses solely on the early days of diagnosis with a young child. Even though the final words are written six years after Elle was diagnosed, very little is said about her life with diabetes now. How is she adjusting to being a teenager with diabetes? No burnout? How does a diabetes alert dog factor into dating? Not even a post-script from Elle. That was disappointing.
Elle & Coach is not about finding a cure for diabetes. It’s about finding what works until that cure is found. For Elle, it’s Coach.
My final thoughts: Go get a copy. I highly recommend it. Keep a box of tissues handy. You’ll need it.
For many of us, the thought of not having insulin or testing supplies is…unthinkable. We know what happens and it’s not acceptable. There are many organizations that work throughout the world to help people with diabetes get the life-saving elixir and the needed supplies to those who would otherwise have nothing… and bluntly put… die without our help.
When I see people on social media ask where they can send unused insulin and supplies, I immediately think of Insulin for Life USA.
Who is Insulin for Life USA?
They are a not-for-profit organization located in Gainesville, FL. They collect unexpired and unneeded insulin, test strips, and other diabetes supplies (think lancets!), and ship them to developing countries. They are then distributed, free of charge, to children and adults with diabetes who otherwise would go without these life saving medications.
They will accept insulin vials and pen cartridges, syringes and pen needles, glucagon kits, A1C kits, ketone sticks, new in box meters, strips, lancets, and unused lancing devices. You can pack your unused supplies and ship them to Insulin for Life USA and they’ll send you a tax-donation receipt. (I’ve done it. It’s super easy.) Here’s all the info…
You may recall in late August that Tropical Storm Erika devastated the small country of Dominica in the Caribbean.
Insulin for Life USA has been contacted by the International Diabetes Federation requesting that we send diabetes support to aid in the rebuilding process. We encourage those who would like to play a role in this emergency support and our ongoing efforts to assist those in need to consider making a donation.
You can become a part of our team either by donating insulin, test strips and other diabetes supplies or by making a financial contribution. All gifts to Insulin for Life USA are considered tax deductible by the IRS.
There are many worthy organizations. This is one of them. And they’re not asking for money (well, yes, they will take a monetary donation…), but if you have unused supplies…. this is the organization that can distribute them to those who have no access.