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.
Whenever she hears that song, the dancing must commence.
No matter what you might be doing, just drop it.
Grab a hand, jump up and down, and wiggle wiggle wiggle.
These are the instructions The Kid gives to me, drill-instructor style, while grinning and giggling.
She makes me happy. Just like these five things you should know about:
1. The Diabetes Technology Society announced the DTS Surveillance Program for Cleared Blood Glucose Monitors.
How important is this?
For those of us who wonder if the number on our blood glucose meter is accurate, it’s a majorly huge thing. Once a blood glucose meter is released to the consumer after approval by the FDA, there is no way to find out if these meters are… accurate. This is the post-market surveillance program that Strip Safely and advocates of meter and strip accuracy have been wanting (and the FDA, too!) - it’s coming!
“This surveillance program will provide a significant benefit to both patients and manufacturers,” says David Klonoff, M.D., founder of Diabetes Technology Society and Clinical Professor of Medicine at University of California, San Francisco. “Patients will benefit by having access to more accurate meters on the market and manufacturers committed to delivering accurate products will now have an opportunity to back up claims about quality and accuracy with proof from this independent, third-party testing program.”
Abbott Diabetes Care is already committed to supporting this program and other major manufacturers will be signing on, of that I’m sure. Manufacturers who do not pass the accuracy guidelines at this point will still be allowed to sell in the U.S. market, but I foresee these accuracy reports becoming important in the future as the FDA looks closely at how to ensure our safety with the help of the DTS. Huzzah!
2. The 2014 Diabetes Mine Patient Voices Contest is waiting for YOU.
From the DiabetesMine website:
The 10 top entrants were selected to receive an “e-Patient Scholarship” to attend the DiabetesMine Innovation Summit that takes place annually at Stanford University in Palo Alto, CA. Each year, our winners act as “delegates” for the patient community, expressing our needs and desires to the Powers That Be: decision-makers in pharma, healthcare, technology design, medical device regulation, software and app development, national advocacy groups and more.
This year, the DiabetesMine Innovation Summit will be held on November 10, 2014. Your entry is a product review video for the DiabetesMine Test Kitchen - and it needs to be in by June 19, 2014.
As a 2013 Patient Voices scholarship recipient, I say this:
The DiabetesMine Innovation Summit was a watershed experience for me. The passion of those attending from various communities: medical device, pharma, clinicians, developers, investors, insurance, and patient advocates was electric and infectious. All of us arrived wanting to share how we could work together to make life with diabetes easier using technology. We left with new ideas and a better understanding of what we need to do to make that happen.
If you have the opportunity to attend, do not pass it up. And this is your opportunity to attend this invitation only event!
3. Sweet! Advantame - the newest artificial sweetener to be approved by FDA on May 19, 2014.
For those of us who are stuck with limited choices for artificial sweeteners, here comes Advantame. It’s super concentrated sweet, but here’s the scoop from the FDA’s site:
Advantame is chemically related to aspartame, and certain individuals should avoid or restrict the use of aspartame. To that end, FDA evaluated whether the same individuals should avoid or restrict advantame, as well.
People who have phenylketonuria (PKU), a rare genetic disorder, have a difficult time metabolizing phenylalanine, a component of both aspartame and advantame. Newborns are tested for PKU using a common “heel-prick” test before they leave the hospital.
Foods containing aspartame must bear an information statement for people with PKU alerting them about the presence of phenylalanine. But advantame is much sweeter than aspartame, so only a very small amount needs to be used to reach the same level of sweetness. As a result, foods containing advantame do not need to bear that statement.
So, heads up - it’s chemically related to aspartame (Nutrasweet). I’m a sucralose (Splenda) chick when I use artificial sweetener (I buy Diet Coke with Splenda in can form, and have been known to bring my own 12 packs everywhere…). I try to avoid aspartame, so this new sweetener will be interesting to watch from a marketing perspective.
4. Speaking of Sweet!, I’m over at A Sweet Life, too.
I recently wrote an article about guilt and food and diabetes. See them all traipsing off into the sunset together? That’s what I’m talking about. (Spoiler: They don’t traipse off well.)
There are some stupendous articles written by some of my favorite peeps… and I’m happy to have been asked to add my voice over there. Pop on over and check the site out!
5. Diabetes Hands Foundation has got you in mind: MasterLab for Diabetes Advocates on July 2nd in Orlando.
Want to be a champion for effective diabetes policy? You’re in luck. The Diabetes Foundation will host the very first MasterLab, July 2, 2020 at Marriott’s Orlando World Center in Orlando, Florida! We are excited to offer the first of its kind, action to amplify diabetes advocacy. If you don’t have a background in diabetes advocacy, that’s ok! No previous experience needed.
I never thought I would be an advocate for diabetes. Hell, I never thought I’d be an advocate for anything. It’s funny how life brings you to new places.
I’ve learned a lot since I made the decision to speak up for myself, but I still have a long way to go… and I’m thrilled that this is happening.
Please seriously consider joining us.. Learn more and register here…
And a bonus Fab Friday Happy, because I’m deliriously happy about this…
Register for The Diabetes UnConference. We don’t want to miss you while we’re there, talking about the things that are important to us - people with diabetes.
Now go wiggle, wiggle, wiggle. Make yourself have a happy day.