Video: Children Diagnosed With T1D Under 2 Years Old.

We interrupt this not actually scheduled blog break to tell you that there's a new group video today from the You Can Do This Project.

In case you need a reason to watch it, here are a few.

"We went in [to the pediatrician's office] and I told him that I thought my son had diabetes, and they told me that he did not - that children that young don't get diabetes. They checked him for strep and flu and both came back negative. They tried to send me home, telling me that he had just a virus and that the drainage was making him thirsty, but I knew there was something wrong."

"The doctor did a urine test [at her one year Well Child appointment] because she had a history of UTIs. Fortunately there wasn't any bacteria in her urine, but they did find sugar. The doctor thought this was an error, so they did a repeat test and again found sugar. There were really no symptoms."

"He had started breathing kind of funny, so my husband and I took him to the emergency room. We were told he had Bronchitis and he would get better. By Thursday of that week he was not able to stand on his own anymore, and he really could not stay awake. We took him to a children's hospital and he was finally correctly diagnosed with type 1 diabetes. His blood sugar was around 500." 



You'll hear from five parents whose children were diagnosed with type 1 diabetes before they turned two years old. My hope is that if you are already a parent of a young child with diabetes, you'll find some comfort in knowing you aren't alone. I hope the road seems less bumpy over time as your fellow travelers point you to the less turbulent parts of it. I hope that feeling of "me, too" relieves even the slightest bit of the anxiety, fear, and discouragement you may know.

My other hope is that conversations like this one help spread the word on what the symptoms of type 1 diabetes are. As these parents explain, babies can't tell you how they're feeling. It becomes very, very important to know the signs - it could save a child's life. If a child you know is experiencing any combination of the list below, please consult with a doctor immediately.

• excessive thirst
• frequent urination; soaked diapers
• drowsiness and lethargy
• increased appetite
• sudden weight loss
• fruity, sweet odor to breath
• heavy, labored breathing       from JDRF.org

What Diabetes Awareness Month Feels Like to a PWD.

Also answers to "American Diabetes Month", "National Diabetes Month", "National Diabetes Awareness Month", and "November".

Diabetes Stigma on Mashable.

When I think about what we can do to improve the psychosocial health of people living with diabetes it always comes back to this, for me: share your story. Even when it feels like you're saying the same things again and again, keep sharing. Keep talking. Keep showing. Keep living. Don't give up.

This is how we change the world for the better.

http://mashable.com/2014/08/27/diabetes-stigma/

A "Fakebetes Challenge".

Do you know Michelle Litchman? She's a Utah-based nurse practitioner who is very active on social media and she does a lot of good work for people with diabetes. Among her many brilliant ideas lives the Fakebetes Challenge, where healthcare professionals pretend to "live with diabetes" for a week by taking saline injections, doing fingerpricks to check their bloodsugars, counting their carbohydrate intake, and corresponding via text message with a real-life diabetic.

A few weeks back, I was one of those real-life diabetics.

Michelle's rules of this challenge were as follows:

1. Kim will decide when the fakebetes challenge will start. Since no one gets to choose their diagnosis date, Whitney doesn't get a say in this.
2. The challenge will last 1 week.
3. Whitney will be expected to test her blood sugar before meals and at bedtime. There may be times when an additional blood test is needed in the event of hypoglycemia or hyperglycemia issues.
4. Whitney will be expected to take her saline injections as follows: 22 units of "long-acting" saline once daily, 1 unit for every 8 carbs plus a correction of 1 unit for every 30 points greater than 130 of "rapid-acting" saline. Adjusting insulin as needed for hypoglycemia, exercise, etc. Whitney is to notify Kim of what dose she took, how many carbs she ate, and if she is exercising.
5. Kim will be expected to feed Whitney blood sugars to work with. These may be real blood sugars she is actually experiencing, or made up. She may choose to decide to send Whitney different readings based on what Whitney is doing. Kim may also opt to send symptoms instead of glucose readings (ie. feeling shaky, sweaty, etc.) which should prompt Whitney to check her blood sugar.
6. Please connect so you can decide the best way to connect with each other. This may be by text, email, facebook IM, etc. Whatever works for you.

Whitney, who is a newly-minted RN, went through some of the mechanics of diabetes for one week - pricking her finger and checking her BG using a borrowed glucose meter; injecting herself with saline (in lieu of insulin); keeping a written log of everything she ate. We used my BG readings to determine her doses, while using her carb counts and exercise plans.

This week-long exercise gave me opportunities to bring up some of the quirks of my own life with diabetes - that even small amounts of exercise can cause significant drops in my BG; that I am extremely insulin-resistant while sleeping; that some foods contain what I refer to as "sneaky carbs".

I did my best to share some curve balls, and even I felt a little burnt out on diabetes management after a week of this constant communication. But there are some things that even a week of pretending to have diabetes can't really recreate, like:

• experiencing exactly 1.8 seconds of rage-filled panic after you pull your car into the parking garage at work because you think OH MY GOD I FORGOT MY INSULIN PUMP AT HOME but then realize OH MY GOD IT'S JUST IN MY OTHER POCKET 
• the hassle of remembering to keep all prescriptions filled on the first possible day so that you can build up a little bit of a cushion
• the gamble of not treating a BG of 74 when you know you're eating lunch in half an hour
• the agony of an "Er 5" while using one of your last test strips
• the labyrinth that is trying to figure out why you received a medical bill three years later
• wondering "what is true and what is foreign when everything is covered in the same gray dust"

I have great respect for any health care professional that voluntarily signs up for a challenge like this - even if it isn't a full (or, arguably, even a half) picture of what living with diabetes is really like, it's a glimpse that many of their peers do not have the chance (or desire) to experience. Whitney was so open to learning and asked great questions, and I hope she found our interactions worthwhile.

I would encourage future healthcare providers to take advantage of opportunities like this, and I hope that this type of make-believe helps to shape their future care with the empathy and understanding that their patients most certainly will need.

You can find Whitney's point of view on our Fakebetes Challenge today on Michelle Litchman's blog.

#MasterLab Debrief.

Many other people have already done a fantastic job of recounting what happened at the Diabetes Advocates "MasterLab" event a couple of weeks ago (video of the event is coming soon, I'm told): find a well-curated Storify of MasterLab tweets courtesy of diaTribe here and a thorough write-up at Diabetes Daily. I also dig this call to action from Christel.

And because everything was so well-documented by others who took more notes than me (which was actually everyone because I took zero notes and opted instead to just experience, engage with, and process it with the aid of a few tweets), I'm not going to try to do that. Instead, I'd like to tell you some of what I took away from the event.

(I want to emphasize, first, that I realize there are about 10,000 different things that need our attention when it comes to improving outcomes for people living with diabetes - but if we all pick one and work on that thing, we're moving the needle. And if more/all of us can also pick "speaking up to Congress", our united actions can have an impact on EVERYONE.)

#1: Our community needs unity and focus, now more than ever.

We, as a diabetes community, are a "sleeping giant" in advocacy. - Paul Madden #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

We must stop judging ppl w/other types of #diabetes if we want the world 2stop judging everyone w/diabetes. #weareinthistogether #MasterLab
— Kelly / Diabetes (@diabetesalish) July 2, 2014

#2: If you're not angry, you're not paying attention.

Bummer of a slide, but this is why we need to mobilize. #MasterLab pic.twitter.com/EUxsdr75E8
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

Let that anger move you to action, but let's take care to not unleash that anger on the very people whose help we need to affect change.

We need ALL people with diabetes as stakeholders AND the payers, insurance, pharma, govt, EVERYONE involved in the fight #masterlab
— Sara (@saraknic) July 2, 2014

#3: We need to get smart(er).

I've been spending more time wandering around the FDA's device regulation website lately, trying to educate myself more on how device regulation works, what things like 510k's are, and why some approvals take so much longer than others. I highly encourage you to do the same. If we want our concerns to be taken seriously by others, we need to know what we're talking about.

#4: Money speaks most loudly. Remember that as you frame your asks.

As we #advocate we have to keep in mind: "Ppl vote with their wallets if they don't have a loved one with #diabetes" #masterlab #cwdffl2014
— Heather Gabel (@HeatherGabel) July 2, 2014

To Congress: currently 60% of those on Medicare who have diabetes visit hospital > once/yr. End game: let's reduce that spending. #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

Not covering an insulin pump for someone who needs it does not save money if they end up w/ hospital visits; complications. #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

We need to emphasize where real costs are. Cheap, inaccurate meters don't save taxpayers $. Keeping ppl healthy; productive does. #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

#5: We can learn a lot from advocates and activists in other health communities, especially HIV/AIDS.

Read the Back to Basics document; a roadmap for how activists changed the advocacy landscape in HIV/AIDS. Yes, it is 32 pages, and yes it is absolutely worth your time to read it.

YOU GUYS: If they could enact that kind of change with 30,000 patients, imagine what we could be doing with our 30 million.

#6: There has been no more perfect time to mobilize and act.

"5 people don't change the system, 500,000 do. You need masses and masses of people." @ManganielloHCM #CWDFFL14 #MasterLab #DOC #HCM
— Lauren Stanford (@Lauren_Stanford) July 2, 2014

@diabeteshf rocks. #diabetes parents are all potential. Time to unite to change the world. My honor to be present with these folks.
— Michael Manganiello (@ManganielloHCM) July 2, 2014

Get over to the Diabetes Action Hub, and let's get to work. Encourage your members of Congress to cosponsor the National Diabetes Clinical Care Commission Act if they haven't already - and THANK THEM if they have. (You can track the bill's progress through this site.) Send an email. Make a phone call. Compose a tweet.

I'm fired up; I'm ready; let's do this. Together.

Disclosure: Diabetes Hands Foundation, through the Diabetes Advocates program, covered the costs of my travel, conference registration, and lodging while at MasterLab and the Friends For Life conference through a scholarship I was awarded.

"How Are You Managing Your Diabetes"?

Are you asking what devices I use? A glucose meter, an insulin pump, and a continuous glucose monitor (CGM), mostly. Sometimes my phone joins the party. I know that the tools I use are not indicative of how "bad" my diabetes is, but I recognize that you may not know this.

Are you asking about medications? My insulin pump uses short-acting insulin (Humalog), if that's what you're wondering. I know that insulin is a scary medication to have to use, and I've had to reach a place of acceptance. I don't expect you to realize that on your own.

Or maybe you want to know my A1C, to give some indication of how "controlled" I am. That's what the measurement exists for, right? To be able to judge? I clocked in at 7.0 last week. Does that tell you everything that you want to know? I know that it won't, but I acknowledge that this is the easiest way for you to find an answer to what you think your question is.

It could be that you're wondering how many severe glycemic excursions I experience; how many times my postprandial readings fall outside of a specified range. Maybe you wonder what my fasting numbers look like. They may tell you something, but with the absence of context I know you won't be allowed to see the full picture.

Do I count every carbohydrate accurately? Do I bolus with precision and punctuality? Do I make smart food choices? Not all the time, no. But I strive to be kind to myself and realize that there is no "perfect" when it comes to diabetes.

Perhaps your curiosity lies in my abilities - do I feel up to the task? Do I wake up each morning motivated to do all of the things I must do to care for myself? Do I actually live when I live with chronic illness? Those are valid questions.

It is said that living with diabetes is a test of patience. This is true for more than one reason; while the disease itself tests me daily, the conversations and questions it inspires in my daily life allow me the privilege of practice: to not bristle at a sharp comment; to swallow the instinct to be defensive; to remind myself that someone's questions about my diabetes are always, always shaped by the experiences that person has had in their life and any misdirected hate has actually nothing to do with me; to practice kindness with both myself and with others. Each question is a chance to remind myself of our shared humanity and curiosity and to respect and (when warranted) educate those around me.

Part of what is so challenging about advocacy is the vulnerability required of those sharing their stories. Part of the reward, though, is that the process allows us to practice and become better human beings.

Too deep? I don't think so. We're getting better, and we're doing it together.

MasterLab / #CWDFFL14.

Next week is going to be one big blur of diabetes advocacy and emotions (and being without my kid for a whole week) (cue more emotions) so please leave a message kthanks BEEP.

By way of a scholarship* (immense gratitude as I wouldn't be able to attend either of these events without a scholarship's help), I'll be at the Diabetes Advocates MasterLab event and then the Children With Diabetes Friends For Life conference in Orlando, FL. And then because I really love a three-pronged challenge we will also be exhibiting the You Can Do This Project during FFL's exhibit hall hours.

MasterLab is on Wednesday. The exhibit hall also opens on Wednesday. Stress; I haz it.

Luckily I have some great friends and advisory team members who are more than willing to make this all work out. (Are we sure that beaker in the MasterLab logo isn't actually some sort of cocktail, because a few of us may be looking for one after trying to balance all of this.)

I'm really looking forward to the MasterLab as a way to figure how to move some things forward, and also because I'll get to meet so many of my favorite fellow advocates in-person, finally. There's a special magic that happens when we get a bunch of us into the same physical space.

In relation to exhibiting You Can Do This Project, I want to say a BIG THANK YOU (imagine me waving my arms around in an exaggerated fashion while saying that) to two organizations that helped me pay for the stuff we'll be giving away at the booth:

Like so

Thank you to Asante Solutions, makers of the Snap insulin pump, for paying for 1,500 You Can Do This Project bracelets to be given out to FFL attendees. You may recall that I did a four-week trial of their insulin pump last December. They'll be at this conference and offering free trials with their insulin pump there, too.

Thanks also go to Akibah Health for covering the costs of printing flyers and magnets (we're going to have magnets!!!) to hand out. They are developing a smartphone case all-in-one glucose meter, and will also be at FFL.

These are incredibly generous gestures, considering YCDTP is not a registered non-profit (we're a grassroots thing that dreams of being an official non-profit some day) and the only way you'd know they covered the bill for these is that I'm telling you right now. No co-branded anything. No signs of recognition at the booth. Just this blog mention/disclosure and my eternal gratitude to them for stepping up in a "we'll help where you need it and then just kind of back away and let you guys do your thing" kind of way.

Hell yeah.

It's also worth mentioning that CWD very generously "upgraded" us to a booth space (instead of the table location we started out with), so we'll be sprawling out in our 10x10 area, maxin' and relaxin' and actin' all cool. Thank you thank you thank you, Jeff and Laura.

It will be a crazy week that I'm crazy thankful to be having. Let the packing procrastination commence!

*The scholarship from DA covers the cost of my flights to and from the conference, the shuttle between the airport and hotel, conference registration, and the hotel room that Sar-Bear and I will be sharing (scholarship recipients were required to room together, as part of the whole deal - I'm used to that, anyway!). FFL just wouldn't be the same if Sara and I weren't sharing a room!

#DBlogWeek: Change The World.

Today's prompt: Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

* * * * *

Diabetes Blog Week! Woo!

(In years past I've had the time to write posts ahead of time and actually thoroughly think through the answers but not the case this year. Bear with me?)

There are times where I find it difficult to focus my diabetes advocacy efforts. There are so many issues and causes that I know are important and I have a lot of feelings about so many of them. It's becoming apparent that, for me, it's best to narrow it down and do a few things really well (or at least, be able to put enough effort into them to make some kind of impact) than say yes to everything but not do any of it particularly well. A more concise way to say that: "work on a few things and RT the rest".

Sometimes that means stepping away from things. It's not been an easy feeling to say "no" to helping with issues to which I very much want to say "yes", but I'm learning to live with the discomfort. (I have to - there's just only so much of my free time I can commit.)

I think my diabetes advocacy passions will always default to the psychosocial and emotional aspects of living with diabetes, but the more I learn about access issues - to test strips, to continuous glucose monitoring, to insulin pumps, to insulin itself - the more I feel the need to do something about making sure that everyone with diabetes has access to the same life-saving medications and technologies that I currently do. I am incredibly lucky/privileged to be able to use a brand new insulin pump; to wear a CGM at all times; to have an insurance plan that covers the majority of my diabetes-related health costs (even if I have to fight them for that coverage sometimes); to have an adequate supply of insulin in a refrigerator and pump supplies in the drawer(s); to be under the care of doctors who work with me to decide how to best care for myself; to have access to the internet and the support of so many people who understand, intimately, what this life with diabetes is like.

This is where I'm going to be focusing more of my attention, and I hope that when the call sounds, you'll raise your voice too. (I'm actually working on something very specific, but I don't want to distract from the #DBlogWeek shenanigans. Check back with me next week.)

If you're interested in working with others on a broad spectrum of diabetes advocacy issues, consider becoming a member of the Diabetes Advocates organization (united voices are louder, you know). We're working on some great initiatives, and we need your help. (And if you can make it - come to Orlando on July 2nd for the MasterLab event.)



Find out more about Diabetes Blog Week here.

Full Circle.

I spent this past Saturday morning at the "T1D Motivational Summit", held by a local diabetes camp, in a hotel ballroom in Omaha. I had met the camp's director last fall when You Can Do This Project exhibited at TCOYD Omaha (his table was right next to ours) and he kindly asked if we'd come to this summit event as well.

For the record, if there is a group of people connected to diabetes gathering somewhere, I want to go to there.

I expected there to be people I hadn't met before and plenty of people who had never heard of You Can Do This, but what I hadn't anticipated is how small of a world this is.

I didn't expect to see kids approach my table, pushing up their shirt sleeve, to grin and show me that they were still wearing their bracelet (was it from TCOYD last year, or the JDRF walk the year before?). My heart soared every time it happened.

I didn't expect to reconnect with an old buddy from the diabetes camp I attended twenty years ago. (Nevermind that it took about 45 minutes after we were "introduced" to come to the realization that we already knew each other!) Did I say twenty? My god.

I didn't expect to re-meet a nurse from the pediatric endocrinologist's office I went to as a child - nor did I have any expectation that she'd remember me when I told her my maiden name. ("Little Kimberly!!!! Oh my gosh, this is wild! I absolutely remember you.")

And I certainly didn't expect, later on in the day, after I had packed everything up and was ready to head back out into the snow, to see that endo in the lobby. I'm fairly sure that the last time I saw him was when I was 15.

"Dr. Corley? Hi, I'm a former patient of yours."

I introduced myself and watched his eyes widen with recognition.

"Oh, my! How are you?? What are you up to now?"

We only had a few moments to talk, but it meant so much to me to be able to have this full circle moment where I could tell him a little about what I'm doing, and how healthy my daughter is, and how thankful I am for everything he did for me. He disagreed - "you were the one who did all the work!" - but I know that the kindness, knowledge, and guidance that he and his staff shared with my family and I made a significant difference in my health, then and even now.

It's not often that you get to say "thank you" to someone who has had an impact on your life like this, and it just made the day that much brighter.

Gentle Reader: Your Manners Are Fine.

You may see a certain Washington Post article floating around the interwebs; it contains, in part, this letter and response from Miss Manners:

DEAR MISS MANNERS: I am a businessman who frequently flies both domestically and internationally. I also happen to be an insulin-dependent diabetic. 

I currently do my glucose testing in my seat. It does involve using a lancet device to get a drop of blood to test, but is fairly unobtrusive. Of course, all lancets, alcohol preps and test strips are stored in my test kit for proper disposal later. 

Am I being rude to perform this test next to a stranger? Injections I perform privately in the plane’s lavatory. In the airport, I use the counter by the wash basin, since most water closets have no room for insulin vials and other supplies. 

Many people seem to stare and resent the fact of performing such a function in this space. I have also had children ask, “What is that man doing? Isn’t that a bad thing?” (They’re obviously thinking of their drug education classes.) Am I too self-conscious?

GENTLE READER: Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a dissertation on your cholesterol.

The technology associated with diabetes is fast approaching this standard, although Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others. 

You may chose to tell children that it is a medical procedure, or ignore them and let their parents do that. Miss Manners would hope that any parents present would also resolve to teach their children to be more discreet with their curiosity.

Instead of addressing Miss Manners herself, I am choosing to write to the person I truly care about in this situation and take a crack at responding to the original letter. Miss Manners; meet Miss Realistic.

Gentle Reader of Miss Manners,

How thoughtful and lovely of you to consider the delicate flowers who might share small, confined quarters with you for a few hours. Miss Realistic admires your concern for their preferences; not everyone is so self-aware or makes such efforts to be so considerate of others. 

Miss Realistic questions, however, the experiential knowledge of the person from whom you were seeking advice. It is likely that Miss Manners knows very little of what a life with diabetes actually means, or how ridiculous her advice to you was. She may not realize the immediacy and unrelenting frequency with which one must manage one's disease. She has not acknowledged any recognition that taking care of one's health must certainly trump the discomfort of others, in every case. 

What Miss Realistic suggests, Gentle Reader, is that you do whatever it is you must do in order to maintain your good health. Regular testing, injecting, or whatever else one might need to do can often be done discreetly in public settings, but if not, Miss Realstic asks: 

So what? 

Please, Gentle Reader, know that public restrooms are intended for the relieving of one's bladder or the like, not for the infusion of insulin or the procuring of the minuscule droplet of blood required for a blood test. Miss Realistic wonders: would Miss Manners instruct one experiencing an allergic reaction to find a restroom to administer their epipen? A person with asthma to wait for a toilet stall to use their inhaler? Miss Realistic certainly hopes not. 

One final thought, Gentle Reader: if someone has a problem with you taking care of yourself, that problem belongs to that person, not to you. Please take a bit of the consideration you've offered to others, and turn it to your own health and safety.

A video Miss Realistic made a couple of years ago serves as an addition to this response; please enjoy, and keep taking good care of yourself (in public, even!).

You'll also find responses to Miss Manners from Jess, Kerri, Kelly, Scott, Ilana, Stacey, Rachel, Christel, Marie, Leighann, Brianna, Cecilia, Sara, Kari, Scott, Allison, Carly, Karen, Jess, Cara, Scott, Hannah, Heidi, and Chris.

Advocacy Help Needed: CGMs and Medicare.

Did you know that Medicare won't cover continuous glucose monitors (CGMs)?

It doesn't matter if you have hypoglycemic unawareness. It doesn't matter that you may have proven in the past that using a CGM lowers your A1C, or helps you avoid dangerous low bloodsugars, or saves your insurance carrier thousands of dollars in hospital bills when all hell breaks loose. It doesn't matter if your physician write a compelling letter stating its medical necessity.

Medicare will not cover CGM devices, for any reason, period. If you want one, you're paying out-of-pocket.

Sitting here as a thirty-something, it would be easy to dismiss this as something that doesn't apply to me. But if I'm lucky (or, depending on how you're looking at it, maybe it's the opposite?), someday this will absolutely apply to me, and I find it hard to sit on my hands and do nothing when I know that others need help. I value my CGM very much, and imagining my life without that technology available to me is a scary place to go.

I received an email from Laddie and Sue over at Test, Guess, and Go about Sue and her husband's struggle to get a CGM, and Sue is asking for the DOC's help. From Sue:

My husband has Type 1 diabetes with severe hypoglycemia unawareness and was previously covered for his Continuous Glucose Monitor (CGM) by private insurance. Unfortunately, when he went into the Medicare system at age 65 and needed a new CGM, it was denied because Medicare considers it a “precautionary” device. We appealed Medicare’s decision and quickly moved through the first two levels. We are now in Level 3 and had a hearing with an Administrative Law Judge on June 26, 2013. 8 months later we are still waiting for the Judge’s decision.

In the meantime, my husband has been without a CGM for over a year. During this time, he's had some pretty close calls. It's only through luck...or God watching over him...that he hasn't harmed himself or someone else.

Because of the incredible frustration and exhausting fear that we have experienced, I have become an advocate for all people with diabetes who need a CGM or will need a CGM in the future. Representative Carol Shea-Porter [D-NH1] has taken up the cause and introduced a bill into Congress: H.R. 3710: Medicare CGM Coverage Act. This bill provides for coverage of CGMS by Medicare if recommended by a physician. I have been in touch with Shea-Porter's Legal Assistant, Marjory Connolly, and they are currently doing a big push among Shea-Porter’s colleagues in the U.S. House of Representatives asking them to sign onto this bill.

You can find more about Sue's story, and what YOU can do to help, here: http://testguessandgo.com/2014/02/17/join-the-crusade/  Sue has thoughtfully laid out exactly what you can do, and has even provided a template for you to use when you contact your Representative. For those who haven't called a member of Congress before, I promise you that speaking with them is not as intimidating as you may imagine. Do your research so that you know what you want to say, and call. Be confident in your own voice. It's their job to listen.

Nothing will change if we do not speak up.

Wordless Wednesday: Spare A Rose.

(Please feel free to steal and share everywhere - two days left in the Spare A Rose, Save A Child campaign!!)

Spare A Rose, Save A Child.

Remember how I said I'd be asking you for help? This is one of those times.

“Here’s what T1D looks like in Haiti.” (photo of young girl) “This child died.” Heart just exploded. #MedtronicDAF
— Kim / Diabetes (@txtngmypancreas) January 11, 2014

The Spare a Rose, Save a Child campaign is a DOC-driven effort to raise both funding and awareness for Life for a Child, an International Diabetes Federation program aiming to fund the continuous medical care, access to supplies and medication, and diabetes education that children in developing nations need to stay alive.

The cost of one rose is about five dollars - and while that flower will wilt and die, the same five dollars would provide life-saving insulin to a child for one month. There's sort of a beautiful, poetic irony there.

What you're being asked to do is fairly simple: buy one less rose this Valentine's Day, and instead send that money to the Life for a Child program. You can even download a "Certificate of Awesome" to give your loved one in place of that rose.

I've embedded the direct donation code onto my blog (it will remain above my posts), and will leave it until the Spare a Rose campaign concludes on 2/14/14. Please considering donating, if you can.

I hope you'll help us spread the word, too - this one-sheet may help cover the bases on how you can do that, as well as the Spare a Rose, Save a Child website. Our voices are louder when we use them together!

Medtronic Diabetes Advocate Forum: Leap Of Doom.

You may be aware that I have a history of throwing myself off of proverbial cliffs, hoping that our community will catch me. So far, I'd say that strategy has worked out pretty well.

Keeping that in mind, I have something to ask of you.

Something was ignited at the Diabetes Advocate Forum last week (#MedtronicDAF), and I don't think any of us are willing to let this fire reignited inside of us burn out. Nope, instead we're asking you to add your branches and kindling to the flames and let's get this thing so big and powerful that it amazes even us how far it reaches; so that no corner of our diabetes community goes without feeling its warmth wash over them.

“Here’s what T1D looks like in Haiti.” (photo of young girl) “This child died.” Heart just exploded. #MedtronicDAF
— Kim / Diabetes (@txtngmypancreas) January 11, 2014

Changing diabetes beings with us, and ends with us.

So here's what I'm asking of you: there is work to do, and this community - and me, specifically -  need you to be ready and willing to act. There will be many times this year that I'll be calling upon you for action, in many forms, and I'm asking you to be open to that. I'm asking you to help change the world with me, little bit by little bit.

(Whoooooa, there, big dreamer! It's a pretty big leap of faith to assume you can...)

Oh, hey, I'm glad you said that, because that's exactly what I want to emphasize.

One of the speakers we heard from was David Strasberg - son of Lee Strasberg, the infamous acting coach; he and his son both live with T1D - who coached us on "the art of asking". I'm completely paraphrasing here, but here's one of the things he said that keeps sticking in my brain:

"People call it a 'leap of faith', but that's not what it is at all. 'Faith' assumes that everything works out in the end - that's not real life. When you leap, everything is uncertain and where you'll land is impossible to see. It's more realistic to call it a 'Leap of Doom', and it's one of the hardest things to do."

I'm asking you ("you" is everyone - fellow PWDs, HCPs, advocacy organizations, device manufacturers, pharma, ALL OF YOU) to "leap of doom" with me this year, because doing what feels safe or certain isn't the same stuff that will enact change. I'm asking you to be open to chaos with me; to be bold; to raise your hand at the very moments it feels uncomfortable to do so. Change is scary, but that's exactly the feeling we need to thrust ourselves towards. The things in life that are most worth doing are usually the hardest.

"Imagine a world where industry and patients work together to help #pwd..."- Nancy Katz on taking steps forward, Medtronic #MedtronicDAF
— Medtronic Diabetes (@MDT_Diabetes) January 12, 2014

I'm asking you to use your resources and connections to further the work being done by diabetes advocates like myself. I'm motivated, willing, and over-the-top enthusiastic, but I can't do it alone. If you see value in what we're working towards, show us.

When we don't work together, it's easy to make excuses for why we don't succeed. #MedtronicDAF
— Mike Lawson Diabetes (@MrMikeLawson) January 12, 2014

I'm asking you to be part of "us". Let's Leap of Doom all over the place in 2014.


Disclosure reminder: Medtronic Diabetes and Bayer Health paid for expenses such as travel, lodging, and food during my attendance at their event. I was not paid for or asked to write about the event, and opinions are my own.

Medtronic Diabetes Advocate Forum 2014.

This past weekend marked the third of Medtronic's "Diabetes Advocate Forum" events; the second of which I have attended (disclosure). I love being in a room full of friends - some I'd only just finally met/hugged in person - where our combined passions in the world of diabetes cause the air to tingle with purpose and potential. The room buzzed and pulsed with a sense of urgency, that with our powers combined (and I'm talking our whole community here - not just those physically in the room) we really can enact the change we want to see. We are willing to do the work. We want to motivate action. We want to be a vehicle for another PWD to find and feel the "me, too" of our community.

To paraphrase one of the event's speakers, we're all in the business of "hell yes".

Image courtesy of Medtronic Diabetes' Twitter feed. 

Like at 2012's Forum, I was again struck by the graciousness, openness, and genuine care with which the Medtronic Diabetes team crafted this event and responded to our concerns and feedback.

I expressed this to a member of Medtronic's PR team, and I'll say it again here: I recognize how difficult it must be to orchestrate an event like this one; to invite us into their home. As a group of advocates, we're documenting the whole event live (#MedtronicDAF); quoting sometimes word-for-word the candid responses to our questions (many of which may be very uncomfortable to answer). No matter what speakers, sessions, tours, food or conversations are scheduled, you can't make everyone happy as we all have different priorities and interests. Few to none of us care about making Medtronic look good; what we are interested in is how Medtronic is helping the diabetes community, and if we think they aren't, we're going to express that* to the room, and to the world. (And oh buddy, did we.)

Something felt different to me about this one.

I've attended events like this in the past and there are times where as I'm boarding my flight home, I think, "It was great to see my friends - but what did we really accomplish? What actionable items are we going home to work on? Why did I take vacation days from work (and now, time away from my 5 month-old) for what felt like mostly just a sales pitch?" If you refer to it as an "Advocate Forum", you have to deliver on that
moniker. If you invite people who identify themselves as advocates, you should be doing what is in your power to enable us to do that work.

Some important things to note about how Medronic Diabetes communicates:

• When it comes to using the verbiage "Artificial Pancreas" in their marketing of the 530G system and correcting the places in other media where the AP term was used too liberally, they know they've messed up. "We know, and we're learning." The AP language was used in the FDA's approval of the device, so that's where Medtronic took its cues from. But, as many in the room expressed, there is a difference between "can" and "should". The use of the term is inappropriate and misleading.
• And in order to learn - they listen. What we see is a small percentage of all the wheels turning behind the curtain, and what I saw when that curtain was lifted is reassuring. They may not get everything right, but they try. (One session included their PR team showing us some of their past Facebook and Twitter posts, and asking us what we liked/didn't like about what they did, and what we'd like to see instead.)
• They are listening to not just their own customers, but viewpoints from every direction. Many of us in attendance don't use Medtronic products and many faces were new to the event this time around. Coming into this event with a Dexcom CGM and a Tandem insulin pump could have been weird, but it never felt that way. I actually did a cartridge change while Dr. Fran Kaufman and one of the speakers stood directly in front of my table, a mere two feet away. Instead of feeling uncomfortable, I felt respected.
• They value the feedback they receive, even when it isn't good. Which, btw, can I make a request of y'all here? Instead of saying something like "I HATE YOUR PUMP!", take a step back and think about why. Let's be constructive in our feedback please (did Steve tell you that, perchance?) and tell them why we don't like certain features, and offer what might meet our needs better. For example: "I still can't hear the alarms when I sleep because they aren't loud enough/the pump is under my pillow when I sleep/I've gotten too used to the sounds. A broadened spectrum of alarm sounds and volumes or integration with my phone (because I wake up to my phone's alarms) would help this pump fit into my life better". There's a way to express your discontent without losing your shit or being disrespectful, and I'd encourage us all to strive for that. ::steps off soapbox::

I thought Medtronic did a nice job of making sure we could ask what we wanted to ask of the people who could directly answer our questions, and covering a broad spectrum of concerns. For example, the very first night of the Forum I was introduced to Mike Gill, Vice President of US Sales and Service for Medtronic Diabetes and asked about my experience with Enlite. It's something I appreciated during the 2012 Forum, and again this time.

Foremost in my mind, though, is that Medtronic not only assembled us but scheduled time for us to work on some of our own discussion points: essentially half of our time on Saturday. A session led by Bennet, Scott, and George saw a structured brainstorm of where we want to focus our efforts, how we can engage the diabetes community in evolving ways going forward, etc. And then the last hour of the Forum, which was one of my most favorite parts. It was essentially an "unconference" in which we were brought together, but under no predetermined structure. We were encouraged to interact with our peers about topics of our choosing; this time, on the upcoming Spare A Rose campaign (stay tuned for details) and it was magical. I wish someone had gotten video of it. It was this beautiful conversation of "how can we do this?" and then someone would have an idea but not have the connections to execute it. But then two people would volunteer, "I know someone! I'm emailing them now", and someone else would spin that idea off to something else, and a team would form to take care of that part. "But have we thought of..." and before a sentence could finish, someone else nodded and said, "I'm on it." By the time we were done, a pretty big, multi-level plan was in place.

"Hell yes" indeed.

I enjoy seeing what our community can do when we unite our voices; how a chorus can be heard so much more easily than a solo performance. It doesn't mean that we all need to get behind every intitiative, but it means that where we can, we should. My thanks go to Medtronic Diabetes and Bayer Health for footing the bill to get us all together in a space where that could happen. 

One last takeaway? That I need to map out a quantitative strategy for the advocacy I want to do in 2014, and not shy away from asking for help with it. People can't help you if you don't give them the opportunity and specifics with which to do so.

(Being assertive is a good thing - just ask Mean Scott.)

[Disclosure, as referenced above: Medtronic Diabetes and Bayer Health paid for my hotel, flights, and food while in the Los Angeles area. I was not asked to write about the Forum, and opinions are always my own.]

*Introspective observation: at the last Medtronic Diabetes Advocate Forum, I felt downright intimidated. I wasn't sure why I was there, and felt inadequate in my efforts; the quality of my questions and concerns; my ability to even get a word in among so many vocal advocates. I must be leaving my cocoon, as it were, because my experience at this Forum was full of the self-assurance, ease of speaking my mind, and occasional wearing of sassy pants that had previously only been the stuff of my dreams. Something's changed - age, becoming a mom, having success in some of my advocacy efforts, already having rapport with some Medtronic employees, I don't know - and my goodness, does it feel gooooood.

Choosing An Insulin Pump: The Jedi Returns.

Guess what finally happened yesterday?

OH MY GOD OH MY GOD OH MY GOD INSULIN PUMP APPROVED!!!!! (Me: http://t.co/sapAZ8t7wj)
— Kim / Diabetes (@txtngmypancreas) December 30, 2013

I think the image I linked to it that tweet got lost, so here's a similar one for reference:

SO FREAKIN' EXCITED

I had been pestering calling the CareCentrix (my DME provider; henceforth abbreviated as "CCX") rep just about every day since my case was reopened, and yesterday she finally got to call me with the good news that my request for a new insulin pump was approved. It was a bumpy and anxiety-ridden ride for me that was full of tweets, emails, and phone calls. In short: I had to be loud, persistent, and relentless, as well as my endocrinologist providing additional information of many different varieties.

@Cigna and CCX say they've reached out to my endo 4x re: insulin pump appeal. My endo hasn't received anything. Getting frustrated.
— Kim / Diabetes (@txtngmypancreas) December 17, 2013

To Cigna and/or CCX's credit, they did (for the most part) do a good job of keeping in contact with me. Most emails to Cigna customer service were responded to the same day, and the rep from CCX also gave me her direct extension so that I could call her any time I had a question or concern, which I did quite often. (By the end of it, I had her extension memorized!)

But to stay on topic, no new news yet. The clock is ticking - warranty is up in 9 days. I am trying not to panic.
— Kim / Diabetes (@txtngmypancreas) December 20, 2013

According to CCX, it was my endo's office that contributed to a lot of the delay. I don't know whether that's true or not, but with all of the requests CCX made of my endo's staff (fax records, answer these questions, now fax other records, now we need a letter from you explaining why she needs this, now we need to know what's wrong with her pump AGAIN....) and a short-staffed office that is no doubt bombarded at this time of year with last-minute requests, I can understand why it would take some time. Still, I was filled to the brim with anxiety and frustration.

My frustration with CCX is turning into frustration with my endo. Weeks go by, no add'l info provided. Won't return calls. #InsulinPumpSaga
— Kim / Diabetes (@txtngmypancreas) December 27, 2013

I think if you'd test my blood pressure right now, the machine would just lay down and melt. #InsulinPumpSaga
— Kim / Diabetes (@txtngmypancreas) December 27, 2013

And then, a breakthrough!

Just heard back from endo. They faxed everything over to CCX this morning. C'moooooon, CCX! Ball in your court! #nowhammies #InsulinPumpSaga
— Kim / Diabetes (@txtngmypancreas) December 27, 2013

Called CCX to confirm faxed docs were received from my doc; got voicemail. Emailed @Cignaquestions to follow up. #InsulinPumpSaga
— Kim / Diabetes (@txtngmypancreas) December 27, 2013

Confirmed that CCX rec'd endo's info; has been flagged for "expedited review". One step closer; stress level down to 10.2. #InsulinPumpSaga
— Kim / Diabetes (@txtngmypancreas) December 27, 2013

But who knows how long their "review" would take, and I could just imagine that it would conveniently require time into the New Year to complete, which is when our deductibles would reset (and I would be responsible for the balance of the cost insurance wouldn't cover).

This is when I may have gotten a little sassy, but you know what? That gets stuff done.

Email to @Cignaquestions unanswered; call to CCX rep goes to vm. Hope those employees enjoy time off. My health doesn't take a holiday tho.
— Kim / Diabetes (@txtngmypancreas) December 30, 2013

Shortly after I tweeted that, the nurse at my endo's office called. "Your insurance just called, and asked about your pump. So tell me again what's mechanically wrong with it?" I repeated myself for what seemed like the tenth time: the housing is scratched, and the buttons are not as responsive as they should be. "I'll press a button, but it doesn't always recognize that I did, the first time. I have to press it a second time for it to register."

"Ah, okay. Perfect. I'll call her right back. Thanks!"

And a couple of hours later, I got a call from CareCentrix. It was the nurse who had been reviewing the "audit" (I shouldn't call it an "appeal", but "audit" is okay? Whatever you want to call it is fine, just approve the darn thing), and I have to believe this is her favorite kind of phone call to make.

"Hi, Kim? I'm an RN with CareCentrix and have been the one reviewing your file - I spoke with a nurse at Dr. [name redacted]'s office this afternoon, and she was able to provide the last of the information we needed while completing your audit. I wanted to verbally let you know that your request for an insulin pump has been approved."

I made a noise that can't really be recreated, except by the combination of relief, exhilarating joy, and delicious victory.

Being that it was the second-to-last day of the month, my next question was, "So what is my next step to moving this along? Do I contact the pump company?" "I will fax over the authorization documents in the next few minutes here, so they actually haven't received them yet - give me 10 minutes or so, but yes, if you have a direct contact with them, you could call and tell them to look out for my fax." Whoopee!

No sooner had I hung up with the CCX nurse than I was on the phone again, asking if an authorization had been received yet. It hadn't, and the pump rep and I have been in contact back-and-forth since then, getting everything in place. There's still some panic in my system as this is really down to the last possible moments, but she assured me that she would "get this to you even if I have to drive it to you myself". Ha!

So, by now you may be wondering which pump I ended up going with - since the order hasn't technically been placed yet, I'm not real comfortable disclosing that at this time. It doesn't feel real yet! But once the order has been placed, I'll let you guys know.

For now, I'll be relishing in the feeling of finally having "won" the right to own one of the medical devices that helps me stay healthy.

Huzzah!!

UPDATE: The pump is now ordered, so I can feel okay telling you: I ordered a t:slim. If you're  wondering why I ended up going with it over staying with Animas or switching to the Snap... 

I'll explain my thoughts on Snap later this week(tl;dr: I love it, but it's missing a couple of features that are super important to me, personally), but it comes down to t:slim having the features most important to me, that the other two pumps just don't offer at this time. I think the Ping is a great pump, and doing the trial with a Snap pump was a pleasant experience, but for what I need right now t:slim seems to be the best fit. More on that later.

Choosing An Insulin Pump: The Empire Strikes Back.

[An update/resolution to this post can be found here.]

"I have heard there are troubles of more than one kind

Some come from ahead, some come from behind

But I've bought a big bat, and I'm all ready, you see

Now my troubles are going to have troubles with me"

- Dr. Suess

It hadn't really occurred to me that obtaining a new insulin pump to replace my soon-to-be-out-of-warranty one would be a challenge. Based on my past experience, I figured that filling out all of the paperwork would be the most difficult part of the process (and God laughed): the warranty on my Animas Ping expires at the end of this month, so of course I need a new one. The pump's housing is quite scratched up, and the buttons are not as responsive as they once were. The pump's technology is now at the very least five years old (FDA approved the Ping system for sale in July of 2008), and doesn't have many of the features that newer pumps offer patients.

Except that Cigna and Care Centrix (my insurance and DME providers) don't seem to agree.

For a company that says they are "dedicated to helping people improve their health, well-being and sense of security", I'm sure not seeing it. Using a medical device that's endured four years of use and (inadvertent) abuse is going to help my "sense of security"? Do you know how many times this pump has been dropped, knocked around, or been exposed to snow and below-freezing temperatures? It's the nature of wearing a medical device 24/7 for four years. It's normal wear-and-tear.

This process started with me filling out patient info forms with both Tandem and Asante (figuring that since Animas was already approved for me, I didn't need to pursue that route), and my doctor faxing over the needed signatures and documents. It's been a few weeks since we did that, and an insurance verification rep from Tandem and I have been emailing back and forth periodically throughout the process (asking when my current pump was purchased, if it was still in warranty, etc.). When I answered that my pump was purchased in December of 2009, the rep responded positively. "Great news", she said.

And I thought it was, too.

Except that her follow-up email said this:

"Just got off the phone with CareCentrix. Per CCX the expiration date does not warrant a new pump. They state the current pump most be malfunctioning or not meeting your medical needs."

I  responded by telling her about the pump being scratched up, and the buttons not working consistently.

"The only way we can get this approved is if we could show your A1C’s being effected by the current pumps malfunctions. Looks like your last A1C’s were in the 6’s which would be considered manageable. We may have to wait until the warranty is up on the pump and the functionality is no longer meeting your medical needs."

Expressing my disappointment, I told the Tandem rep that I'd be contacting Cigna. She added that she was very surprised to find out that Cigna does not have an automatic approval policy for a new pump when the old one is out of warranty - to her knowledge, they are the only carrier with that policy.

I also want to point out that the Cigna employee used the phrase "entitled to" when referencing my ability to obtain a medical device that makes a huge difference in how I am able to manage my health.

I took to Twitter.

I will not cry at work. I will not cry at work. Cigna/CareCentrix won't cover new pump unless my A1Cs show adverse health from current one.
— Kim / Diabetes (@txtngmypancreas) December 6, 2013

I am crushed.
— Kim / Diabetes (@txtngmypancreas) December 6, 2013

So let me get this right - because I am too healthy, I will continue to use inferior technology. This is so backwards.
— Kim / Diabetes (@txtngmypancreas) December 6, 2013

So they're waiting until my health is negatively affected to cover better treatment options? Way to be proactive, @Cigna.
— Kim / Diabetes (@txtngmypancreas) December 6, 2013

And then, a ray of sunshine:

@txtngmypancreas Kim, I would like to try and help you get this resolved, can you please email me at LetUsHelpU@Cigna.com? Thank you.
— Customer Service (@Cignaquestions) December 6, 2013

You bet I'll email you. R2? Fire up the converters!

Because the thing is - it's great that I have an insulin pump already, and I'm thankful for it. It is one tool among many that has helped me attain what is apparently the only criteria that Cigna cares about - a "good" A1C result.

What Cigna fails to factor into their judgement here is that A1C isn't actually a great summarization of my diabetes management - it simply provides an average. It doesn't factor in standard deviation of glucose values, it doesn't predict the chances of me developing complications, and it certainly doesn't relieve any of the cognitive burden of managing this disease all day, every day. My A1C doesn't tell them how I attained that result.

And what Cigna/CareCentrix also fails to recognize is that part of the reason I'm okay NOW is that I have been able to use the best of what's available NOW. If you want me to continue to be healthy in the future, I need to be able to use the best of what's available in that future. "You're doing okay with what you're using" is the exact argument FOR a new device being approved. Let's make sure I keep doing okay.

What this boils down to is really simple - Cigna/CareCentrix can either pay for a new insulin pump now (because that is the treatment option that is most effective for me, given what's currently available), or they can wait until I've experienced any number of adverse health outcomes that result when this old insulin pump malfunctions and pay for any resulting hospital charges. Show me where that fits into their mission statement of "helping people improve their health and well-being".

Do I sound dramatic? Good. This is my life and my health we're talking about, and I take that health very seriously. Give me the tools I need to help me be healthy, and it will save you money in the long run, Cigna. If the technology is there, let me use it.

Let all of us use it. This isn't just about one person with some degree of social media influence fighting for what she needs - this is about every person having access to what can help them achieve good health. This is about all of us, and moral issues aside,  it's to a payer's financial benefit that their customers have access to the baseline preventative care they need.

I will write whatever needs to be written; show whatever needs to be shown; speak with whomever needs to be spoken with; do whatever needs to be done. Their policy is wrong, and I'll be happy to tell them exactly why.

(Where things stand as of this posting: Cigna has spoken with CCX and the request is being looked at again. I'm working with my endo's office to get CCX whatever proof they need to get a new pump authorized and covered.)

"Sir, the possibility of successfully navigating an asteroid field is approximately 3,720 to 1." - C-3PO

"Never tell me the odds." - Han Solo