#Giving Tuesday – More Than One Way To Give

The diabetes community has something in common besides malfunctioning pancreases*: our giving nature.

*I prefer pancrei, but Webster’s would probably laugh at the petition.

We do it all year round and in many ways: Spare A Rose, Save A Child; JDRF and ADA Walks, volunteering time and talent to projects like Nightscout (CGM in The Cloud) and Tidepool, sharing knowledge and much needed support through non-profits like Diabetes Hands Foundation and diaTribe (who is celebrating their First Anniversary as a non-profit!) and much more.

So, it seems strange to ask you to donate today, because you already do so much to help others in our community, but here I go, hat in hand (but a lovely chapeau it is, bedecked in feathers and a wide brim)…

Whether it is a few minutes or a few dollars, please consider helping these worthy causes today:

It costs you nothing, but the addition of your voice is priceless.

We have two days left to tell the FDA that patients should be involved in every discussion, at every level, when it comes to the devices we use to keep us healthy and safe. Go here, read the easy steps, and add your comments to the FDA docket. (It closes December 4th, so giddy up, cowboy.)

I’m truthfully astonished to see how far the diabetes community has come in the last year, rallying to ensure the FDA understands how important our opinions matter. They’ve been stellar at recognizing and working with us, but there are no resting on laurels, because while we know it and some forward-thinking individuals know it, not everyone does. Until there’s a cure, all we have is our voice. Give it today.

You’re Going To Shop, So Might As Well Give At The Same Time

Full disclosure: When I’m not being a rabble rouser or loving on my family, I’m the founder of The Diabetes Collective, Inc., which is a recognized 501(c)(3) non-profit organization, created to fund programs like The Diabetes UnConference. There are so many wonderful non-profits out there that focus on living well with diabetes, so why create one more? Because there wasn’t a program designed to bring all adults with diabetes together to share their thoughts and get support in a safe environment. In order to make that happen (and some other things that will be coming after the first Diabetes UnConference is in the bag), The Diabetes Collective, Inc. was founded.

The Diabetes Collective, Inc.

Amazon has a program called AmazonSmile and you can select The Diabetes Collective as your charitable organization.

“The AmazonSmile Foundation will donate 0.5% of the purchase price from your eligible AmazonSmile purchases. The purchase price is the amount paid for the item minus any rebates and excluding shipping & handling, gift-wrapping fees, taxes, or service charges. From time to time, we may offer special, limited time promotions that increase the donation amount on one or more products or services or provide for additional donations to charitable organizations.”

There is NO additional cost to you. The prices on Amazon are the same as if you are shopping without the AmazonSmile selection.

Please consider helping this way by choosing The Diabetes Collective, Inc. as your non-profit organization and help support the scholarships we provide to bring people with diabetes together to have the discussions they can’t have with their doctors or family.

If You Got a Penny or Two to Share…

You can donate directly to The Diabetes Collective, Inc. by clicking on the button below or on this link.  It will take you directly to a secure PayPal checkout.

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This is a tax-deductible donation so you’ll get a tax receipt from The Diabetes Collective, Inc. for 2014. Any amount will help.


But I also want to direct you to another amazing opportunity that is near and dear to my heart: The Bionic Pancreas.

You can donate (and it’s tax -deductible) here:

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There you have it. Three ways to give: no money, giving through shopping, and giving through tax donation. Do one, two, or all three.

Wait. Stop. There’s one more way to give.

You can share this post with your friends. Your family. Strangers on the street. Tell them about how important a role diabetes plays in your life (even though you don’t want it to…) and how they can help you and millions of other people. (And if you don’t follow this blog on Twitter or Facebook, please do! I’m funny on all sorts of social media avenues!)

So, give. Whether it’s your time, your shopping acumen, or with a financial gift. I adore you for even allowing me to put it out there.

Give what you can.

Do what you can.

And we are grateful.

All Right, Stop. Collaborate And Listen…

No, this post is not about Vanilla Ice, but you can thank (or curse) me later for using his famous lyrics throughout.

“To the extreme I rock a mic like a vandal…”

I talked about it before, but on November 3rd, a monumental event occurred. With the strategic urging of the heads of diaTribe, an unprecedented meeting was scheduled between the FDA and people with diabetes. #DOCAsksFDA was streamed live, so that those in the diabetes community could listen to and watch those representing the diabetes community have an interesting discussion about what patients want the FDA to understand.

I wasn’t the only one who wanted online access to this meeting. About midway through the meeting, the FDA servers crashed. (Hmmm…. the #DOC strikes again?) While those in the room continued sharing the dialog via Twitter, it was frustrating to not hear the conversation as it was happening. And there was no one at the FDA recording this separate from Adobe Connect.

Except…. someone was recording. Thank heavens. diaTribe employees in the audience whipped out their iPhones and video recorded the remaining hour and a half and have put it up on YouTube.

The conversations that transpired must be seen to appreciate the raw emotion our patients showed as they answered questions. Take some time. Stop, watch their collaboration, and listen…

“…We are all in this together.” – Rebecca Killion (type 1 diabetes, 17 years)

Of course, if you don’t have time, diaTribe has done their standard (their standard is exemplary) job of picking out the pearls from this and you can read them here.

“Dance, Go rush the speaker that booms…”

heroBy the way, if you haven’t entered the giveaway that diaTribe is having, dance on over and do so.

diaTribe is continuing the “diaTribe Gets Fit Giveaway” – giving away ten grand prizes: a fitness tracker of the winners’ choice between a Fitbit Flex or Jawbone Up (and cool bonus prizes!)They only do one giveaway like this each year, so seriously, go do it. Takes two seconds…

“Anything less than the best is a felony…”

DM Summit Logo 2013I’m heading out to join other patients for the DiabetesMine Innovation Summit, happening this Friday. If you’re unfamiliar with what this is, I consider it to be the only place where patients, manufacturers, Pharma, investors, inventors, clinicians, and payers can have real conversations about the future of diabetes innovation. I’m so grateful for DiabetesMine for putting this together each year and that I’ll be attending for the second time as a Patient Voices Scholarship winner. (My travel, lodging, and some meals are paid for by the scholarship offered by DiabetesMine.)

This is, in all truth, my favorite summit I’ve ever attended. I learned so much last year, and more importantly, left inspired to be more involved with the diabetes community.

This year’s topic is Emerging Models for Improving Life with Diabetes: “Against the backdrop of the Affordable Healthcare Act, which programs have the biggest potential, and how can we address challenges to their success?” And boy, do I have a lot to say as a patient- and a lot to learn as a patient.

“Check out the hook while my DJ revolves it…”

For those of you who have made it this far into the post, let me share my latest story about my hook (a.k.a. my right hand with the finger that continues to paint me as a budget Captain Hook…). I had surgery on October 2nd, felt that something just wasn’t right, and then realized as the swelling from the surgery went down (which takes a while) around the incision site, that something else wasn’t right… I saw a black line in my palm.

One of the sutures wasn’t fully removed when the stitches were pulled out by his nurse a few weeks ago.

It explains why the inflammation wasn’t going away and why scar tissue was developing. I ended up having impromptu hand surgery in his office yesterday, where he pulled out almost a half-inch piece of surgical thread. And then, I got two more stitches to close up that incision. (Fortunately, these are superficial and I’ll take them out myself.)

And I confirmed that, yes, indeed, I do have a PIP flexion contracture and NOT diabetic cheiroarthropathy as he had previously diagnosed. In this case, I hate being right. My options are occupational therapy and a splinting regimen, but it will take time and some injections that are considered to be “white hot pain”.

I feel like I didn’t do enough to push the idea of the PIP flexion contracture at my last appointment and it’s set me back, because I could have done more to alleviate the problem and potentially cured it. (That being said, my surgeon did offer physical therapy and I declined, wanting to see if the swelling was causing the pain.) That’s sometimes the problem with being an ePatient; you know what the possible diagnoses could be, but you may still defer to the surgeon and then disregard treatment choices.

The finger will get better. I will be a better patient. Better. Stronger. Faster. Six Million Dollar Diabetic.

“Quick to the point, to the point, no faking…”

logo-2Open enrollment for the Healthcare.gov and some state marketplaces is happening right now in the United States and for the first time ever, we’ve decided to enroll through the marketplace.

John and I reviewed the high deductible plan we had this year and truth? It’s cheaper for us to play for a platinum plan with a low deductible than what we paid this year for premiums and out of pocket. I made some cringeworthy choices for my diabetes (eschewing some prescriptions, medical appointments, and supplies until I met a $4,000 deductible because we didn’t have enough money in our HSA account is something I never thought I would do in my life…)

I, for one, am grateful for the ACA. I know that I am paying through the nose to stay healthy. After I wrote the post about the bare minimum a Type 1 adult could pay for basic healthcare, a comment came in that floored me. Here it is:

Hold on. “I can’t afford it”. These statements need to be qualified and quantified. In some cases this might be true. But with Medicaid for low. no income you get help. For those working, maybe choose the cheapest cell phone plan and most basic cable TV and the lowest possible car payment. Forgo vacations and eating out. You know I gave up these “basic Luxuries” and came up with $4,900 in “savings” applied to my care. The article, like many sensationalizes a terrible burden or cost when taking all things into account is sometimes not there. I acknowledge there are many that cut outgoings to the bone, but too many think it is a right to enjoy their luxuries AND have money for health care for T1D or T2D. – Tony

I don’t think Tony gets what I was trying to say. So, here I go… no faking…

  • We have the cheapest cell phone plan. We do not have basic cable… or any cable. (We use HD over air.) We don’t have a car payment, as both cars are paid off. (My car is from 2003 and I’ve sunk over $2k to keep it running this year.) We haven’t taken a “vacation” since before our daughter was born (3 1/2 years). Eating out? We’ve cut out eating out long before you suggested it. Special occasions like a birthday gets a nice dinner out. I cut coupons, shop sales, buy clothes at consignment stores.
  • Wait. You mean I can’t have a “luxury” and have money for health care? That having this disease and wanting to be healthy shouldn’t be a right? If you have $4,900 to apply to your care, bully for you. For the rest of us, that $1,591 I quoted was for treatments available 30 years ago and did not take into account the thousands that can be accrued if something goes wrong… like trigger finger surgery. Even with insurance, I am now in debt.
  • Sensationalize? No. No. No. If anything, I didn’t sensationalize enough.

(If you would like to comment on his post on my blog, feel free. This, however, if all I will say on his post, because my head and heart hurts thinking about how I’d like to respond.)

And now, you’d think I’d send you off by actually showing you “Ice Ice Baby”, right? Wrong. Here’s Adam Scott, explaining what it all means:

And I may have a thing for Vanilla. 

 

In No Particular Order – Diabetes Neat-o News

1199767_63019393Sometimes, I’ll see something diabetes related that interests me and I file it away in my inbox, saying: “I’ll share that…”

Today, I’m cleaning out my inbox. You’re welcome.

In no particular order:

But here’s the interesting tidbit:

“…the clinical data demonstrated that the two meter systems exceeded the minimum accuracy criteria for the new, more stringent ISO 15197:2013 performance requirements for accuracy.”

You know how I feel about blood glucose meter accuracy. We need it. Better accuracy from our blood glucose meters, better accuracy for our CGM readings, better dosing and food choice decisions = better days.

This is from a company that offers relatively inexpensive meter and strips. The devices will be on shelves by Q4 of 2014.

  • Close Concerns/diaTribe has it going on all over the place. I strongly encourage   demand that you take a moment to check the following out:

Kelly Close, the woman I swear never sleeps because she’s so busy doing amazing things for the diabetes community, presented this at a recent FDA meeting a few weeks back. (Click on this link to get her insightful slide presentation… so worth going through… it totally surprised me, and I’m pretty jaded these days.)

And then, there’s the work that DiaTribe is doing for #dstigma (diabetes stigma). Those of us who live with diabetes have probably felt unreasonably stigmatized at some point, whether it’s with friends, colleagues, strangers… and they’re showing this to the public in hard numbers. They did a study, and here are the results… and I love the fact that they’re not just satisfied with dumping the results on our lap. We’ve got work to do, people.

I got to see this in action at the AADE conference in Orlando and was blown away. While I use a pump that does the calculations for me, if I didn’t, this would be the meter I use. Imagine not having to do the math when you want to inject:

“If my blood sugar is 196 and my target is 100 and I’m going to have 48 grams of carbohydrates but I took a correction bolus an hour ago so I’ve got insulin on board….how much insulin should I take?”

It’s easier to ask what time the train will arrive. The answer may be just as elusive. But this meter will do it (but don’t ask what time the train will arrive).

It’s not available off the shelf – you will need to ask your medical team to get you one, but if you’re on MDI… whoa. Get one of those in your hot little hands.

  • National Medical Device Curriculum – Stop whining about how complicated the FDA makes the process of getting a device approved and start figuring out why. (Look, I used to whine. Not anymore.)

What is it? It’s a learning pathway for anyone who wants to know what it takes to get a medical device approved by the FDA, starting from scratch.

The National Medical Device Curriculum is a series of fictional case studies designed to help academic institutions and science and technology innovators understand FDA’s medical device regulatory processes. The FDA believes that better understanding of regulatory processes will accelerate the delivery of innovative medical devices to patients.

Regulatory pathways, PMA, 510(k), acceptable risk… it’s all covered with case studies. So worth your time if you are using ANY medical device to manage your diabetes.

Take a gander. Bookmark it. Share it. Discuss it. The more educated we get as a community about what the FDA does, the more we can help the FDA and device manufacturers with the process.

Thank you for helping to clear out my inbox. I feel so much better now. Do you do windows, too? 

 

Fab Five Fridays: The Tax Man Edition

452697_93454420Some people give to non-profits because it’s the right thing for them to do. Others give to non-profits because they can claim the donations on their taxes. I don’t care why you donate, but today, I’m giving you my choices for non-profits that will not only help your bottom line, but will also help those who help us. (And if you’re going along with my Beatles theme I’ve got going on here… “Help!”)

There are a lot of great diabetes related non-profits like JDRF and the American Diabetes Association – and they do a fantastic job raising funds for research and projects through various events and walks and the like. I’m focusing on the ones who rely on us to seek them out. These organizations don’t have a ton of staff or volunteers to rally around events and fundraise, but still need help. In no particular order, these are near and dear to my heart:

1. The Diabetes Hands Foundation isn’t looking for a cure. It’s looking to empower the community and connect those with diabetes (and those who love them) with others. The incredible staff and volunteers work tirelessly to create value for all who need services and help to raise funds for other organizations. Seriously, how cool is that? You can make a one-time donation or set up a recurring investment.

2. While not a recognized 501 not-for-profit in the United States (it’s a non-profit based in Australia so maybe if you’re an Aussie, you can get a tax break…), Insulin for Life is an organization that brings lifesaving supplies to those who don’t have access to it. I can’t even imagine how panicked I would feel if I couldn’t have access to the one thing that keeps me alive, can you? They are looking for not only monetary donations, but unused, unexpired diabetes supplies. Every little bit helps to defray the cost of shipping, so if you are inclined, give them a few dollars to help others have what they need to live.

3. Diabetes Scholars Foundation offer scholarships for two important groups: Type 1 high school seniors who plan on continuing their education after graduation and families of Type 1s who wish to attend the phenomenal Children With Diabetes conference. Every little bit can help a teen or a family who needs a little extra to get the education (whether academic or emotional) they crave and need. (They’ve awarded scholarships to over 400 families to attend conferences. Seriously amazing.) Speaking of Children with Diabetes, they are now a not-for-profit, but did not have a donation button on their website. As soon as that becomes available, I’ll post it here. Why? This.

4. Joslin Diabetes Center also allows you to donate and is a tax-exempt organization. I was given the best possible care after my diagnosis and for several years after with their top-notch medical staff and researchers helping me along the way. Without them, I’d be in a sorry mess of things. If you have a medical center that focuses on diabetes research or patient programs, I’d love to hear them. List them and the links in your comments and I’ll add them at the end.)

5. And last, but certainly not least, diaTribe is now a non-profit organization, “committed to improving the lives of people affected by diabetes and prediabetes and advocating for action.” The newsletter and research information that they profit is the best I’ve ever seen for those of us who want to learn about the latest and they have been incredibly supportive in so many endeavors.

So, if you have a few pennies to spare, please consider donating to these worthy organizations who support the things we need to keep us “alive and kicking”. (Yes, that was a Simple Minds song reference and not the Beatles.)

“All you need is love…” and a little cash for charity.

If You Read Nothing Else Today, Read This…

503662_17204362I’m not being overly dramatic when I say this should be mandatory reading for anyone who comes in contact with a person who has diabetes – and that is pretty much everyone in this country (and quite possibly, the world).

The best article I’ve ever read about the psychological manifestations of the physical issues of this disease.

Written by one of the most the most well-known diabetes blogger in the U.S. (and quite possibly, the world) and a person who has seen my ups and downs of diabetes and life since we met online before the DOC existed, Kerri just simply put my heart’s and head’s unintelligible aches into words.

This disease is not just numbers and data. It’s more than that, but often (too much), we are thrust under a spotlight (sometimes self-directed) and grilled about things that we may not have control over.

The guilt of complications, whether you have been “perfect” or like me, just “perfect” by blog moniker, is the same. We wander through days and nights with a tremendous burden that no one can take from us, but can add to the weight and guilt without knowing.

We don’t talk about complications enough, because to do so is soul exposing and frightening for anyone who wants not judgement, but understanding and support. We often, unfortunately, get judgement…. but no one judges as harsh as we do.

So, thanks to diaTribe for allowing Kerri to say what needs to be said:

Complications happen, and discussions about them shouldn’t be relegated to whispered fears in the bedroom after the lights are turned out. The language around complications needs to change from one of fault and guilt to that of perseverance and renewed hope. We, as a patient community, have the right to disclose our diabetes complications without being blanketed – and suffocated – by judgment.

Kerri says we shouldn’t just talk about it when the lights are out and I also believe that the light in which we share our complications and fears about them shouldn’t be under a bright spotlight of interrogation… starting with ourselves.