Thugging Diabetes

smiles-1187708-639x457Vegetables and I have not been fast friends over the years. I enjoy their company when they’re accompanied with cheese or if they’re prepared so exotically that they coax me into trying them. If they’re in season, at their peak of popularity, I’ll throw a few vegetables in the shopping cart. But we’re not best buds.

It’s not because of diabetes, but there is a correlation. After my diagnosis, I became well acquainted with the Diabetes Exchange Diet. If you’ve ever had the pleasure of hearing: “You can have 1 milk, 2 breads, 1 meat, and 1 fat for breakfast,” you’ll know where this is leading…

Some vegetables AREN’T vegetables.

Peas, according to school lunch, are vegetables, but not to the Diabetes Exchange Diet. Same went for corn and potatoes. Vegetables I liked as a kid. Vegetables that I ate. Now, I had to choose between a piece of bread and a 1/2 cup of corn or peas? Bread won every time. I loved V-8 juice, so my vegetable portion was often chugged on the way out the door… if at all.

Lettuce is also not a vegetable. It’s a “free food” along with cucumbers and celery. (But one tablespoon of dressing is considered one fat. Do you know how little and sad that tablespoon of ranch dressing looked?) I wanted food that had ballast. Not rabbit food. I was starving. Always starving. (Remember that my diabetes management wasn’t management at all; it was chaos.)

It didn’t take long for me to turn my back on vegetables. Even after I stopped denying myself insulin and got my head together (or as together as it’s going to get), I just never thought to myself: “Hmmm… a bunch of veggies would hit the spot right about now.”

But I’m older now. Wiser.  I’m trying to cook more (and in doing so, blew up my stove, but I don’t think it was my cooking…) and from scratch. We’ve had hits and misses, but I wanted to switch it up a bit.

Enter The Thug

Across my Facebook feed one day came this video…

(Warning – while hysterically funny, it’s also not appropriate to play at a loud volume at work, around small children, or easily offended by the use of any swear worse than “gee willikers!”)

My fingers practically tripped over themselves rushing to order Thug Kitchen so I could, as they put it, eat some goddamned vegetables.

This cookbook has no meat, no eggs, and no dairy in any of the recipes. I’m cool with that, but some people might not be. What is in abundance is profanity, so if you’re not cool with that, this cookbook might not be for you.

In the few weeks that Thug Kitchen has been in my possession, I’ve made some small changes to what I eat that have made an impact on my daily diabetes management: one involves vegetables and the other doesn’t.

Thug Smoothies

It was almost like a vegetarian Dr. Seuss Green Eggs and Ham question : “Would you try a green smoothie?” Neither of us seemed thrilled, but neither of us would admit it. We followed the recipe (which involved spinach, lots and lots of spinach) and lo and behold, much like Sam I Am’s friend… we loved it. And most importantly, it didn’t spike my blood sugars like I thought it would, even with the addition of fruit. I think that all my previous smoothie attempts in the past failed because I used regular milk and yogurt. This recipe? Filling and no spiking.

I broke our old blender because I’ve been making so many smoothies. (Wait… I blew up the stove, broke the blender…is the universe trying to tell me something?) We got a hefty, hearty, Sons of Anarchy strong blender replacement. Breakfast or lunch, I’m getting veggies in a swirly concoction.

Thug Oatmeal610rW-BTUyL._SX409_BO1,204,203,200_

I have long been a “get a coffee in me before I can function” individual and that’s usually the extent of my breakfast. (Yes, I know. Bad.) But I know exactly how much to bolus for how I like my coffee and no spike. Everything else is a toss-up until now.

Hooked now on the oatmeal recipe in Thug Kitchen and no.freaking.spike. Yeah, it takes a little while to make, but I do a huge batch and shove it in the fridge for later in the week. I get a warm belly, a slow-digesting breakfast, and I feel better. (No veggies in the oatmeal, just to be clear.)

Slowly Thugging Diabetes

I’m not shilling the cookbook. I’m talking about how I’m slowly thugging my diabetes.

Making small changes to my diabetes management over the last few months has been eye-opening. Different ways to bolus, to eat, to include yoga and some very mindful mediation, down to adding a medication that I never thought I would. And the result?

The lowest A1C I’ve had in years and not a single severe hypoglycemic episode in the last few months.

We aren’t meant to act like a major organ 24/7/365. (Well, some people can act like a big glutenous muscle…) We weren’t meant to calculate and regulate and feel guilty if we don’t get it right.

I’m thugging my diabetes, small change by small change. All of us can thug diabetes, whether it’s making a conscious decision to eat more veggies or walk a little further (or start to walk!) or try something different. What works for me may not work for you, but what works for you might work for someone else.

How are you thugging your diabetes? What do you want to try? I’d love to hear from you!

 

Get Paid for Having Diabetes? Yes, Thank You.

PrintWords are powerful. They’ve started wars, brokered peace, shared secrets, and molded opinions. It’s well documented that the most powerful advertising is a testimonial from someone who has used a product or service. It’s even more powerful when the individual is not compensated for their opinion.

That’s why I don’t do “sponsored posts.” (Sponsored posts are when a company gives you financial renumeration to speak enthusiastically about a product.) My word is all I have and it can’t be bought or sold on this blog. I may receive a product or service to try it, but I don’t accept cash for my opinion on this blog. (And I always disclose if I receive something for free.)

If I like something, I write about it. If I don’t think it benefits people with diabetes, then I don’t. (I will give feedback to the company on how they can improve on the product, because, you know me… I’m not shy.)

However, I do get cash for my opinion when I answer a survey through YourCareMoments. 

So, I’m writing about it.

I believe that YourCareMoments can benefit us.

Last summer, I was contacted by Zitter Health Insights about a survey service, YourCareMoments, that pay patients with diabetes for their thoughts and opinions and habits. I was told that the surveys would take between 5 to 10 minutes to complete and that I would get paid by PayPal a few days after I completed the survey.

Hmm, I thought. Is this a sham? Would I have to give up really personal information that can be tracked back to me? Would I waste time filling out a survey and not get paid?

So, I checked it out.

Here’s what I found… 

  • Anonymous surveys are sent to registered patients (it’s free to sign up) about healthcare experiences and decisions.
  • They pay a few dollars per survey.
  • They’re legit.

They ask for information (like when you are visiting your doctor or picking up a prescription) and then contact you to ask questions. No personal data is taken (no names or addresses) and the only thing they need from you (besides your opinion) is your email address to send your payment.

I’ve done it since last summer. They’re ramping up, wanting a larger group of patients, and they contacted me again, asking for help. Because I’ve done it (and it didn’t make me feel dirty or violated), I feel comfortable sharing the link with you.

This is the link to sign up:  www.yourcaremoments.com – (It’s free to sign up.)

You must be living in the U.S. and be eighteen years of age or older. 

Who is Zitter Health Insights?

Zitter Health Insights is a healthcare research firm that assists life science companies with issues related to product access, reimbursement, and managed markets.

What does that mean? They collect data from us and then they provide that data to other companies (pharmaceutical companies, insurance companies, etc.) to help them make decisions about products, co-pay or coupon/card programs, or our overall attitude about a product or service. They don’t just do this for people with diabetes; they handle over 150 “therapeutic areas,” asking opinions from many other types of patients.

Why do I think you should sign up?

  1. You help the healthcare industry know what you value and what your opinion is about your life with diabetes. They learn what we want and need. 
  2. You get paid for your opinion. 

You know how I feel about empowering ourselves as patients. If we don’t give our opinion, speak our mind, learn about how we can be part of the solution, then we can’t help. And get paid for your opinion? Duh.

The questions they ask aren’t intrusive. They’ll ask you about pharmacy visits, what types of drugs you are taking to manage your diabetes, how you felt your last appointment with your healthcare professional went. (We talk about these topics all the time as a community. Why not get paid for it?)

And I got paid every time I completed a survey.

You have everything to gain. Let your diabetes voice work for you for once.

Register for free by visiting: www.yourcaremoments.com.

This is not a sponsored post. I did not receive any money or any free services. All of what I said is my own opinion about this service. I recommend it for free.

Snap Decision

You grab a pack of gum at the checkout counter. It’s an impulse purchase and you don’t think about it. It’s a snap decision, made right then and there.

Choosing an insulin pump is anything but a snap decision. You research all of your options, talk with other people who wear pumps, weigh the pros and cons of each pump, and of course, find out if insurance will cover your pump and supplies.

In my case, my insulin pump choice was a snap decision. With a capital S.

unnamed-3The Asante Snap pump. 

After my warranty expired on my previous pump (Of course, it was pining for the fjords five weeks later.) and an opportunity to try the next generation of that company’s pump, I recognized that I needed to do further investigating. I’d only worn two brands of insulin pumps in the over 15 years of pumping. I am still happy with the choices I made back then, but back then, I didn’t have a lot of choices.

I cheer the fact that we have more choices now when it comes to insulin pumps and continuous glucose monitoring devices. Each pump and CGM has its strengths and weaknesses, which of course, means that some people will choose them based on their own needs, wants, and desires.

Here’s why I chose the Asante Snap Insulin Pump.

I Am Ricardo Montalbán

You can’t “test drive” a piece of gum. You buy it and if that new flavor isn’t what you wanted, you throw it away or foist it off onto someone else. It’s gum, right? Costs a buck? Pshh. Get outta here.

But it’s rare (or in some cases, impossible) to test out an insulin pump. This device is going to be a part of your life for a hopefully good, happy, healthy long time. And it’s not cheap. You choose a pump based on what you think it will do for you, go through the hoops (and oh, are there big, flaming hoops!) to get approval from everyone involved, only to find that… you hate it. I know some individuals who have returned their insulin pumps before the “trial” period is over, but it’s a big, ugly hassle and insulin pump companies don’t make it easy.

Asante gets that you should be able to take a pump for a test drive. Feel the rich Corinthian leather seats. Determine if what you want is what you actually get. They offer everyone who is interested in trying the Asante Snap pump a four-week free trial, including supplies, training, and support. I got to sit in the driver’s seat and go for a long drive. I wish all pump companies would do the same.

No More Rebel Yell Time In Range!

The four-week free trial is one thing. It’s another thing entirely when you discover that by not changing a single basal rate or bolus factor, that your time in range with your blood sugar skyrockets. (And when I say skyrockets, I mean supersonic space age shiny skyrockets.) Having the luxury of a Dexcom CGM allows me to see how my blood sugars play nicely (or not nicely) during the day. I was doing a lot of Billy Idol hair spikes. Without changing my eating habits or dosing timing, I saw spikes turn into smoother lines and when I downloaded my Dexcom (Finally able to do it on my Mac!), I was shocked. 80% time in range (for me, range is 70 – 180, but I’m already tightening the higher end).

Less lows. Less highs. All of a sudden, I wasn’t exhausted at the end of the day, chasing the blood sugar dragon. My head was clearer. I had energy. I thought it was a fluke, but after almost 8 weeks on this pump, I’ve come to realize it’s two things: the Asante Snap pump algorithm and the pre filled glass cartridges making this happen. I can’t take any credit for better blood glucose levels.

 Heart of Glass

The pre-filled glass cartridges not only help the insulin not degrade and lose potency as quickly as the plastic cartridges I once had to fill; it also cuts down on the time I used to fiddle around with pump  set-up. Doesn’t seem like a big deal, right? It’s a big deal. You get that I’m a two-minute sort of woman when it comes to diabetes.

Instead of the elaborate ritual of drawing up the insulin into a plastic cartridge, checking for bubbles, filling the tubing, checking for bubbles, priming the pump, checking for bubbles, I drop the cartridge into the pump body and it auto primes. In two minutes, I can complete an insulin pump set up, including a new insertion set. All that extra time I have now? I can rock out. 

(And I don’t have to hunt for a battery in the bottom of my purse. The battery for this pump is built into the pump body. You replace the pump body with the changing of the cartridge. Easy.)

I’m not the only one who thinks this is a good thing. I join Scott Johnson of Scott’s Diabetes, Melissa Lee of Sweetly Voiced and others who have switched from other pumps to Asante. Here’s what some people had to say about how easy it is…

The Little Things Add Up to Awesome

It’s the little things. A customizable color screen. A built in flashlight on the pump for those early morning BG checks. A missed bolus calculation if you stop your pump for a shower. (I never realized how much insulin I had missed even disconnecting for 20 minutes.) The ability to set alarms to NOT go off at 3am to wake you up to remind you to change your cartridge.

Some people prefer an integrated CGM and insulin pump. I tried it.  I’ve come to realize that I’m a Dexcom chick, tried and true. The other pump company with an integrated system has not yet updated its algorithm for increased accuracy. Plus… here’s the thing: The Dexcom G5 screen will be accessible to view on my iPhone I won’t even need to look at my pump to see my CGM graph.

When I was at AADE last summer and saw a glimpse of the future with Asante Snap (I sat next to Wil and we got to ooh and ahh at the demonstration, they announced not only would they be partnering with Dexcom for future upgrades, but they were the first company hooked up with Tidepool. (And you know how much I love them!). And then they blew everyone’s socks off my demonstrating bolusing the Asante Snap from an iPhone. I’ve never had a remote bolus device. I am totally ready for this. And when it does happen, it won’t cost me an arm and a leg (or a pancreas) to upgrade, because upgrades are $99. Straight. No chaser. 

I got to design my Snap. (Well, I got to have input. The Kid actually decided on the colors.)

No Pump is Perfect

No insulin pump is 100% perfect. (If it was, it would be called a pancreas and this blog wouldn’t exist.) I do miss the vibrating alarm option I had on my previous pump. I am a little jealous of other pumps that do have remote bolusing devices. I am a lot jealous of the current integrated pumps and CGM systems that work well. And I can’t upload my data at home; Asante currently uses the clinic version of Diasend.

I’ve talked with the management team at Asante. I’ve asked questions about their future models. They listen (and they even have a patient advisory board so they can get feedback). I see the Asante Snap becoming more perfect soon.

IMG_5863Time. In. Range.

Oh… that time in range. That blissful time in range that makes me feel more rested, less stressed, and looking forward to getting my A1C done. That makes it all worth while.

My new time in range makes my diabetes management easier and less about diabetes and more about me. 

Best Snap decision I’ve ever made.

I talked to Asante so much and gushed about how much this pump has improved my life that I’ve agreed to enter into a consulting agreement with Asante Solutions to write about my experiences pumping on their website. Please check the updated About page  for disclosures. Remember: My thoughts are my own. No one can make me write what I don’t feel or believe in on this blog. In fact, I get zero compensation for this – or any – blog posts on this blog. This is MY blog. MY words. MY thoughts. You get to read the uncensored version – always. 

Accu-Chek To: Program – Saving $ on Test Strips & Getting More

logoIt’s little things like this that I love to share.

Accu-Chek has a new program that gives a fantastic discount on blood glucose monitoring strips and a little something extra to feed the soul.

It’s called Accu-Chek To: and I’ve signed up this week because I believe that they’re doing something right. (A great price. A great idea. A great program.)

It’s a monthly subscription program and they describe it like this:

Every month you’ll receive a box filled with the ACCU-CHEK® essentials you need, plus amazing items for you to discover – all delivered right to your door.

You’re given two options: Accu-Chek Essentials or Accu-Check Essentials + Discovery. It’s a five dollar difference between the two and here’s the reason why: with the Discovery add on, they surprise you each month with samples that help to nourish your body and soul (and aren’t necessarily diabetes-centric).

When you to to the website, you are given the option to view a quick video (but here it is, because you know…)

and then as you scroll down, you’re presented with two choices to start:

Do you have an Accu-Check blood glucose meter?

(If you don’t, you have the option to choose a meter. While I do have a Nano, they’ve now come out with a designer version and it’s.so.cool… Ahem.) You can choose a Nano or Aviva Plus…

Then you choose your monthly subscription option… and here’s the cool part.

50 strips = $20.00

100 strips = $40.00

(If you want the goody surprise box, it’s $25.00 and $45.00.)

You are getting the strips for almost 50% off what you would pay at a store. 

I went to a big name store (rhymes with Ball-Mart) a few days ago just to see what the shelf price of strips were. Even the cheap-o strips don’t meet that price when you use the Accu-Chek To: program. And you get a meter for free. And you don’t have to go to the store. And the strips are accurate. (After all the work that’s been done with StripSafely, I know which strips I feel I can trust. My personal opinion.)

I’ll get strips sent to me every month and a box of goodies. This month’s samples could include lip balm, body butter, tasty treats… and I’m all about that. If you like what you get for samples, you can purchase more at the site. (And you can also purchase more diabetes testing supplies. I’m going to check that out, too…)

The boxes are sent out on the third Wednesday of every month. Tick-tock. Get yours for this month. 

So, if you are looking to supplement your existing strips every month (which I am doing, as my insurance won’t pay for the number of strips I blow through each month) or you are trying to figure out a way to keep costs down and take care of yourself, this is the program we’ve all been waiting for.

The Fine Print

Here’s the deal: you cannot use this program and get the cost reimbursed through Medicaid or Medicare. It’s for individuals who either do not have health insurance or you have health insurance but will not seek to get reimbursed from your insurance using this program.  It’s only available for U.S. residents right now. 

For individuals like me on a high deductible insurance program and strips are part of that high deductible, while I can’t get the strips I receive through the monthly subscription program as part of my deductible, every bit helps.

I am not an employee of Roche. I am not compensated for this post. My opinions are my own. I just think this is an amazing program that does two things: saves me money on things that are expensive for my diabetes and gives me a little lift with the samples they send. 

 

Diabetes Mine Innovation Summit 2013

Q: How do you fit millions of people with diabetes into a room that seats 120?

A: Send 10 Patient Voices winners to the Diabetes Mine Innovation Summit. 

2013 Diabetes Mine Patient Voices
2013 Diabetes Mine Patient Voices

On November 15th, an eclectic group of people converged on the Stanford School of Medicine for what has proved to be one of the most monumental days in my diabetes career. (OK, so it’s not a vocation that I would have picked for myself, but I treat it like a career, except there’s no time off and no 401K and the medical benefits are tepid at best.) Medical investors, the FDA, representatives from pharma and device manufacturers, non-profit icons, big names in diabetes, physicians, and for the first time ever, payers from a few large insurance companies all talked – sometimes with each other, sometimes at each other, and even at one point, yelling at each other about diabetes.

There was laughter, there was anger, and there was wonderment over the promise of technology and the frustration over the same technology. There were surreal moments and for the first time in what seemed like forever, a moment where I was left speechless, jaw gaping and heart pounding. Intrigued? Thought so.

Amy Tenderich, the woman behind Diabetes Mine and the Innovation Summit, welcomed everyone with a brief overview and the Patient Voices video, which I have already provided for you in a previous post. This summit was to share ideas surrounding the topic: “delivering on the promise of diabetes technology”. I’m going to give you a spoiler early in the post: the diabetes world is not even close to delivering on that promise.

Strip Safely and the FDA

Dr. Courtney Lias, the FDA representative of the In-Vitro Diagnostics division (overseeing pumps, strips, etc.) was first-up on the podium, giving an overview of the role that the FDA plays in the technology innovation machine. She stressed the importance of an open dialog between manufacturers and the FDA well before the tech is submitted for FDA approval. Requests for more data slow everything down, but if the FDA and the device manufacturer are skipping down the yellow brick road together, there are fewer surprises. (I don’t know how close a relationship the FDA and Dexcom, Tandem, and Animas have. There was a collective sigh heard around the country when the integration of Dexcom and these two pump companies were delayed for “more data”. Case in point.)

But what was a proud moment was the mention of the Strip Safely advocacy campaign held up as an example of advocacy that is working (for better or worse, I’m sure, in the FDA’s mind). As her slide titled: Patient Interaction stated: If our goals are aligned, can support our efforts. If not aligned or in sync, they can hurt policy implementation. Good communication is key. Bennet Dunlap, my partner in Strip Safely (He’s Batman. I’m Robin. I get to say “HOLY…..” a lot.) and I were tickled to see Strip Safely mentioned. We made a few waves with the FDA initially, but we also understand that they’re just as frustrated as we are. We need to work together to find a way to enforce the accuracy of the technology that is currently on the market.

Swept Away by Tidepool

This, my dear readers, was the reason I believe in the power of our community. Tidepool is a California Public Non-Profit that is putting into action my dream… or to be more accurate, it went beyond my dreams and straight into my fantasy. (No, not that one. Shhh…)

Tidepool is providing an open-source platform for real-time data from all devices I wear to the cloud, securely, sharing the data in real-time with anyone who should see it. Text messages to parents if their children go hypoglycemic while at school? Yep. Text message to physicians if a certain parameter is hit? Yep. It hit every one of my requests and some that I hadn’t imagined, including a little app called nutshell, which Brandon Arbiter created. You input a meal (in the example, it was Huevos Rancheros) and the carb count and how much insulin you take to cover it. The next time you eat that, you can look back and see if you went outside your acceptable range – and you can adjust accordingly.

I could type for hours about how much I admire what they are doing – and if they have a fan club, I want to be their President. (Heck, I’d make T-shirts and do spirit hands while cheering in their office. Too much? Probably.) They are a non-profit and as such, need a little financial help. Take a look at what they do and if you like what you see, you can donate to them. Out of all that I saw in relation to technology at the summit, this is the one thing that I am most excited over. That data would help a lot of us make good decisions in real-time. We need to support projects like this that will help us use the technology that we pay dearly to use.

Third Verse, Same As The First (Hat Tip to The Violent Femmes*)

Anna McCollister-Slipp, co-founder of Galileo Analytics and a T1 to boot, was blunt. Since the last DM Innovation Summit, nothing has really changed. We are still stymied by proprietary technology, frustration of the complexity and the cost, and the stall on the innovation disruption needed to make our lives with diabetes easier and more manageable. She was an excellent speaker, but left me feeling deflated and a little depressed. It’s not as if I didn’t know this already, but sometimes I want it sugar-coated Splenda-coated just a bit.

Passion With Payers

And now begins the heated, passionate part of the summit. As I mentioned earlier, my jaw dropped during the summit – and it happened more than once during the panel presentation of five different payers. It began rather sedately and I’m sure that those sitting up at the front of the room, including the moderator (who was incredibly patient), expected this to muddle along smoothly.

They obviously haven’t met the lot of us in the wild.

Insurance companies are not altruistic. They are a cross of risk-management gamblers, firefighters, and paper pushers looking to keep as much money in their pockets as they can. Despite my description, this isn’t a bad thing all the time. Capitalism is what it is.

Like Anna’s earlier discussion, they were blunt, but unlike Anna, they didn’t understand their audience. We are patients and doctors and manufacturers who were stunned to hear them talk, quite frankly, too openly about how they try to avoid new technology and paying out more than they have to, and that patients are not their customers.

My jaw was already unhinged, but another Patient Voices winner, Corinna, sent it crashing to the floor when she stood up and confronted the panel, interrupting the moderator, shouting:

“I don’t give a shit about your spreadsheets!” 

If I had a pin, I could have dropped it and heard it jingle jangle on the floor.

The silence was complete.

She wasn’t done. She told them what she thought and the floodgates opened, with other Patient Voices, advocates, clinicians and manufacturers representatives letting the panel understand what they thought of their policies and ideas.

The insurance company representatives became understandably defensive, with one stating that he felt personally attacked. In my opinion, if you’re in the insurance business and are sitting in a room of people who are denied over and over again for the items that keep them and their patients alive and healthy, please don’t expect to have roses laid at your feet or people thanking you for your cost-cutting limits and restrictions on strips and insulin.

Will they be back next year? Time will tell. I’m sure that some of them will wear thicker skin if they do attend.

Survey Says…

Diabetes Mine surveyed a large group of people with diabetes about technology and the results were presented by Kyle and… Oh, look. Me.

photo-2

We’ve got concerns. And complaints. And wishes. And if you want to see the survey results, the data is all right here.

Once again, I was struck with the feeling that none of this data is surprising to people with diabetes, but it may be to those who design the technology for us (and even a greater surprise to those insurance companies who often prohibit us from using the technology that does work).

That’s Not All

I haven’t even gotten to share the afternoon’s interactive creativity session and the closing presentation that rocked my world by Dr. Joe Smith of Westhealth. (Promise you I’ll give you that later. It’s worthy of a post entirely on the topic he covered.) I walked out of that room, my heart filled with the hopes and dreams of millions of us… and the desire to fight for the technology innovation that we need.

You want to hear some other perspectives? You should!

Scott Strange – I’m Sure All Patient Concerns Are Absurd 

Amy Tenderich – Exploring Disconnects & Black Boxes

Wil DuBois – A Skeptic’s View of Our Summit: Anger and Hope in Palo Alto

 

My thanks to Amy Tenderich and the sponsors of the Diabetes Mine Innovation Summit. As a scholarship recipient, I was reimbursed for my flight, lodging, and some meals while attending. I also received a free registration for the summit and a bag that included a Misfit Shine from Target.

*Prove My Love by The Violent Femmes is one of those songs that makes me think of my youth…and laugh.