Thanks diaTribe.

Every so often over the next, oh, three or four months, I’d like to take a few blog posts and pay tribute to a few of the institutions that help make my walk with diabetes more informative and meaningful.

Today, I write in praise of diaTribe.

Imagine trying to start, from scratch, an organization (the diaTribe Foundation) dedicated to providing valuable information on everything from accuracy and reliability of diabetes devices, to results of important clinical trials. Then, add in sharing this information online, in a format the average reader (like me and other patients) can understand.

A website where people can get factual information on everything diabetes… and when I say everything diabetes, I mean all of it. The good, the bad, and the ugly, in terms that connect with each individual reader.

Now, imagine also sharing this information in public forums, where many can hear firsthand about new drugs, the importance of time in range, and emerging therapies. Kelly Close, Adam Brown, and others are out there taking part in focus groups and speaking at FDA workshops, helping to advance the art and understanding of managing diabetes for everyone.

I especially like reading the New Now Next and Conference Pearls columns, because they’re great for catching up on things I’m particularly interested in. And the Adam’s Corner columns are great because his perspective is always unique, and one I want to consider when thinking about my own diabetes.

I don’t know how much of all this Kelly Close had in mind when diaTribe began, but she and her amazing organization has been at the forefront of reporting on diabetes research, new products, changes in standards of care, and more in the way few self-sustaining organizations can ever hope to be.

I am happy to say I receive regular updates from diaTribe in my e-mail inbox every week. I can’t say I always immediately go to diaTribe to read the latest, but I almost always go there at some point during the week to learn what I don’t know already, or learn a different perspective on something I thought I already knew. There are very few places on the internet where I can say that’s the case.

Consistency. Reliability. Integrity.

diaTribe.org

Certainly one of my most valuable reference sources. What’s one of yours?

Not Fun and Games

Sometimes, as much as we’d like to, it’s hard to temper the hard truth with diplomacy.

I’ve been trying to calm down ever since I received a letter from my prescription provider, Express Scripts. I’ve been trying to choose my words carefully, trying to understand the other side of the equation, trying to consider how this makes me or the plan I’m a part of better.

Let me tell you, that’s a tall order.

The letter states that I can no longer take part in the automatic refill program through Express Scripts unless I move from the Novolog I’ve been using for a long time, and which works best for me, over to Humalog. In other words, if I have a prescription for insulin, I can get my prescription renewed every 90 days. But only if I use the insulin on their formulary list, which is Humalog.

Now, you might be thinking, this can’t be non-medical switching… you can still get the Novolog, right? First world problems! Stop yer bellyaching!

They’re making it harder and harder for me to still get the drug that works best with my diabetes.

I’ve got nothing against Humalog. It just doesn’t work as well for me. So already, I’m paying three times as much (through my plan) to get the Novolog every 90 days. I’ve been doing this ever since the “preferred drug” on the formulary was switched from Novolog to Humalog.

Additionally, I stayed with Novolog in spite of underhanded dealings where reps from Express Scripts shoved prescriptions in front of my endocrinologist, telling her I asked to switch to Humalog, which is a big fat stinking lie.

Now they’re trying to put roadblocks in my way again.

There’s not a medical reason for this. They’re simply doing it because they want to. Because they really want me to start using Humalog. And they’re trying anything they can to get me to switch.

Non-medical switching, in one form or another, is standard operating procedure for pharmacy benefit managers like Express Scripts. Instead of making it easier to get the drug that helps keep me alive, or at least not making it more difficult, they’re actually paying people money to come up with new ways to keep me from getting it. In subtle and not-so-subtle ways.

This is just another example.

So, my choices, after taking the time to, you know, do my best at managing a 24 hour, 7 day a week condition, are:

1. Spend more time calling and complaining, trying to get Express Scripts to change their minds, as if they were an actual organism with an actual mind

2. Spend more time asking for a refill every 90 days, even though it wouldn’t cost Express Scripts one dime or one minute extra to keep doing things the way they’ve done them. For years.

3. Make the switch to Humalog and get the automatic refill every 90 days

I will likely go with #2, though doing so makes me very unhappy. But hey… happiness or unhappiness are not part of the equation when it comes to pharmacy benefit managers. For Express Scripts, there’s only one part of the equation that counts. And I think everyone knows what part that is.

Because it’s important.

I took the time to donate blood last week. Actually, I was lucky in that there was a blood drive sponsored by the company I work for, so it made things convenient. I didn’t even have to leave the floor I was working on.

If you’re a frequent reader here, you’ve seen a lot of stories about the importance of giving your blood if you’re able. You may be thinking, “Why talk about this again?”.

Because it’s important, that’s why. In fact, donated blood is as important to some as insulin is to People With Diabetes. They can’t live without it. It’s particularly important to those with more rare blood types.

**Note: People living with diabetes in the USA are able, should we meet eligibility requirements, to donate blood.

I’m an O Positive, which puts me in select company, and that means my blood type is in demand. Who could use my blood? Think about it:

– Surgery patients
– Trauma center patients
– Cancer patients
– Patients with Sickle Cell Anemia and other blood disorders

And that’s just scratching the surface. Every blood donation can save up to three lives.

I’ve known a number of people in my life who needed transfusions at one time or another, and without people like me, they might be left needing. I don’t like it when people are left needing something I can so easily give away.

I mean, here’s something I can do that doesn’t cost me anything but an hour of my time. Besides, I’m used to being stuck with sharp objects, so the whole process is no big deal to me.

I hope you’ll go to redcross.org/blood to find out more about the blood donation process and schedule your appointment to give.

Trust me… it feels really great knowing you helped someone who needed you.

Recipe! Stuffed Peppers

I posted something about this over the weekend when I made it, but I thought it would be good to tell you a little more here.

For the first time, I made stuffed peppers. It’s indicative of the fact that I eat a lot of things these days that I never would have eaten years ago. I also like trying to cook things I’ve never cooked before. For evidence of this, I refer you to the Recipes! section of this blog.

This is really more of a hodge-podge of things that were leftovers as opposed to any specific recipe. To keep the carb count lower, I substituted corn for the traditional rice. Made it a little watery, but the taste was grand. For the record, here’s what went into my stuffed peppers:

1/2 pound ground turkey
Leftover frozen corn (this is farm-fresh corn we purchased last summer and froze for later)
2 large green onions
Salt
Pepper
Garlic powder
Onion powder
Oregano
Fresh sage

We took all this and mixed it in a bowl, then divided it in half and stuffed two bell peppers with the mixture.

Over the top, we poured a tomato-based sauce– this was made about a week earlier, from fresh and frozen vegetables, and helped along by a little chicken stock, a lot of basil, and some tomato paste.

Right before they went into the oven, they looked like this in my now indispensable iron skillet:

I cooked them for about 30 minutes at 375 degrees fahrenheit (190 degrees celsius). After 30 minutes, I took them out and added freshly-grated cheddar/gruyere cheese (from Trader Joe’s) to the top. Then they went back in for almost another 15 minutes.

When they were finished, they looked like this:

I can tell you with certainty that they tasted as good as they look.

I’ve made a lot of these recipes over the years, often in a kitchen much smaller and more sparse than the one I work in today. The thing I want to encourage you to do is:

1) Experiment on your own… find new recipes by just fooling around with flavors you like, and then try something new and see if you like that too. And…

2) Share your discoveries. Some of my favorite recipes are from ideas I got from someone else.

I hope you get a chance to experiment in the kitchen and discover something fun and different. Until then… enjoy the stuffed peppers!

Including us. Especially us.

This Tweet really spoke to me the other day:

Renza was at the annual ATTD Conference in Berlin, and she had likely been watching various presentations from companies showing their latest D-tech developments in beautiful, asthetically-superior ways with beautiful, asthetically-superior people. Hence Renza’s tweet.

It should be no secret that the outward message about diabetes, from technology companies, drug companies, and even non-profits, tends to be positive. I don’t think I’ve ever seen a Medtronic, Tandem, Dexcom, Abbott, Eli Lilly, Novo Nordisk, Sanofi, or even JDRF or ADA ad or presentation showing someone dealing unhappily with the day-to-day existence of a chronic condition.

The most obvious reason for that is because it’s not pretty. The second most obvious reason for that is because it’s hard to explain the burden of living with diabetes.

That’s why I sent this tweet in reply:

The thing we need to continue to do is tell our story. No one can explain the feeling I have when late night diabetes attention is required better than I can.

Insulin affordability issues? Listening to people tout their cinnamon okra yogurt cure? Day after day of early morning highs or early morning lows? We’re the ones who experience it. We’re the ones who should talk about it.

No one will know what it’s like unless we show them what it’s like.

There are plenty of things that add to the burden of living with this condition. If they can’t show it in their presentations, I want groups and companies to at least show me how their product or their initiative can help reduce the burden of living with a gusher when performing a set change at work, a failed CGM sensor, and the fear of dying in our sleep.

We, the people living with diabetes, are in the best, perhaps the only, position possible to share this and get non-profits, corporations, and academics to acknowledge and include burden as a factor in their public-facing material.

Yes, of course we can be successful, happy people even after a diabetes diagnosis. But our lives are not the same every day, and there is often a fair amount of bad in addition to the good of living with this disease.

No one should ignore that, or try to put it into a convenient corner for us to talk about when everyone has left the building. Including us. Especially us.

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