Monthly Archives: August 2018

The Language of Gratitude.

Language has been a recurring theme around here for some time, and it’s really interesting the way communication is intertwined throughout our lives. If I were to take a guess, I’d say that at least half the projects that didn’t work out or the friendships that faded out in my life were because I neglected to remember that what we say, or don’t say, every day makes a difference. Sometimes to us, often to others.

These days, patients are getting really good at fighting for the things that are important to them: affordable access to drugs, treatment that helps rather than judges, diabetes truths rather than diabetes myths. But… how much time do we spend sharing what we’ve learned? How much time do we spend thanking those who have helped us along the way?

Some of us are good at that. I’m certainly better at it than I used to be. And sometimes… we just forget. Or worse, we figure that since we’re the ones living with diabetes, when things work out for us, we’re just getting what we deserve and we don’t even need to consider the fact that someone else might have had to make a sacrifice to please us.

We can certainly get by with that attitude. But we’re not going to make a lot of long term friends in the process.

So, when my endocrinologist finds a sample or two for me to take home, I’m sure to thank her.

When the receptionist at my GP’s office finds a way to get me an appointment today because I’m sick today, I thank them.

When my diabetes friends take the time to ask how I’m doing, I respond in kind and try not to talk about myself too much. I’m still working on that one.

When people raise money for research and better care for People With Diabetes, I thank them.

When medical device companies overnight a replacement for a broken part, I am appreciative.

Most of all, I truly try to practice the art of paying it forward. For someone else’s sake, and for my own too.

These things don’t cost me anything. Occasionally, it might mean saying something nice about a person or company that I haven’t been thinking nice things about all the time. But the language of gratitude requires us to recognize each effort on our behalf without remembering the real or perceived slights we’ve encountered along the way.

It’s a learned practice. It’s something I have to remind myself to do all the time. But when I put the language of gratitude into practice, I find myself feeling better. And I can’t put a price on that.

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8 Things: Why I still love to write.

Happy to say I’m on vacation for about the next ten days. I don’t know how much new stuff you’ll see here, but look for me on social media next weekend when #AADE18 comes to my city. I should have a lot to talk about then. In the meantime…

I’ve heard some talk recently about how blogging is falling out of favor these days, and how diabetes blogging in particular may have already seen its heyday.

I don’t know if that’s true. I’m always the last to know things anyway, and while you probably aren’t reading as many diabetes blogs as you once were, there are still reasons for it to continue.

So while I have a moment, here are 8 reasons why I am still proud to say that I’m a diabetes blogger:

1. I believe in telling my story. Oh sure, you can get that “me too” moment from someone’s tweet or Facebook GIF, but a meme doesn’t quite tell the entire story, even if it gets a lot of notice in the moment.

How could I tell about nearly dying on the operating table last year in 280 characters or less? What about my trip to Europe and the diabetes management required to make it happen? Those are things that require more elaboration.

2. I believe in sharing information. Whether talking about a workshop or conference I’ve attended, or letting you know about a chance for you to attend an upcoming workshop or conference, I still feel a responsibility to share what I learn.

The informational posts I publish, like this week’s information on DPPs, DSMEs, and DSMPs, are the ones I really hope you’ll read. Knowledge is still power, and that’s why it’s important for all of us to stay informed. I like trying to help with that.

3. I don’t really care if you’re still reading or not. There, I said it. It’s not that I’m not grateful you’re reading; in fact, I’m exceptionally grateful you’re reading. But if I let page views dictate what I talked about, I probably would have become a basket case long ago. And my page views probably wouldn’t be much different than they are today.

This is one that’s hard to understand unless you’ve accrued a certain amount of mileage in life. But I can tell you that producing something meaningful, whether it’s meaningful to me or to you, is enough for me.

4. I don’t know how long it will last. I’ve often said that I can’t keep writing here forever. I won’t… believe that.

But I don’t know yet when the end will come. I know when it does, I will miss it terribly. So I look forward to continuing to write as long as I can.

5. Despite that, I don’t fear change. It’s true that the only constant in our lives is change. However my online advocacy changes in the coming years, it’s okay as long as it’s productive.

And I like to think that once I’m no longer blogging, it will be because there are many other worthy writers to take my place.

6. More than ever, patients deserve a voice. This should really be at the top of the list.

Patients are getting more of a voice, that’s for sure. But there are so many individuals, be they patients themselves, healthcare professionals, or the general public who still haven’t heard our stories. They don’t know anything about the power of the patient voice. Here’s hoping we can continue to show them what it’s all about.

7. There’s always another story waiting to be told. I don’t know what the story is, or where I’ll find it. But the thrill of finding that story and delivering on the promise of sharing it inspires me every day.

8. It makes me feel good. And connected. And useful. Every time I click “Publish”, I get a dopamine rush to beat the band. It’s good for my mental well-being, on top of all of the other good (I hope) it does. Even when I’m on vacation.
 
 
Here’s something that’s true for everyone writing a blog, regardless of the subject matter: Being free to express our thoughts, share information, and connect with others gives us a sense of purpose, and a sense of belonging. There are many reasons to say goodbye to blogging… but at least 8 that leave me feeling happy about continuing. For now. 😉

Reading the Alphabet Soup

It seems like the more I move along this advocacy trail, the more I’m reminded that I still have an awful lot to learn.

The work I do as part of my state’s Advisory Council on Health and Wellness is a prime example. For the record, I live with Type 1 Diabetes. But the majority of People With Diabetes in my state are living with Type 2. So I’ve had to learn a lot about these subjects lately:
 
 
Diabetes Prevention Programs – The title pretty much says it all about these programs geared toward the booming population with prediabetes. The point is, where possible, to keep prediabetes from becoming Type 2 Diabetes. Diabetes Prevention Programs follow the National Diabetes Prevention Program curriculum developed by the U.S. Centers for Disease Control and Prevention.

The DPP requires a full year commitment. You’re encouraged to develop a diet, exercise, and overall diabetes management routine that becomes a habit over that time.

In a DPP, you’re concentrating your efforts on changing diet and exercise to achieve a 5% to 7% weight loss in the first six months. Yes, you will be weighed at each session. But there’s also a good ingredient of a DPP, in that participants are encouraged to “discuss strategies for self-monitoring of diet and physical activity, building participant self-efficacy and social support to maintain lifestyle changes, and problem-solving to overcome common weight loss, physical activity, and healthy eating challenges”.

The good part about DPPs is that they seem to work: According to an NIDDK study, people with prediabetes who lost 5% to 7% of their body weight had a 58% lower chance of being diagnosed with Type 2 Diabetes.

Diabetes Self-Management Education Programs – Again, geared toward Type 2s, DSMEs aim to provide a Person With Diabetes with information that will potentially help them manage their diabetes better than before.

The DSMEs can be ongoing, allowing the Person With Diabetes a chance to make their progress permanent. The program focuses on three fundamental elements: Nutrition, Education, and Emotional Support. These can be delivered at various points in someone’s life with diabetes, including diagnosis, annually, after experiencing complications, and during transitions like aging and moving to a care facility, or changing insurances or health care professionals.

DSMEs are typically run by diabetes educators, and the fact is that there are too few diabetes educators out there. So it’s hard to get new DSMEs started. The good news is that many medical plans will cover some or all of the costs of a DSME.

Diabetes Self-Management Programs – The difference between DSMEs and DSMPs (besides that one word) is that the DSMP is typically six weeks, while a DSME program can be ongoing.

DSMPs can also be taught by non-health professionals, including those living with diabetes. They have to follow a strict set of materials developed by the diabetes team at Stanford University, and be trained to run the program. DSMPs have a pretty good track record of success too.
 
 
Now, the part that we haven’t discussed yet is that the cost to implement these programs vary. The cost is usually per participant. When you have limited resources, you want to make sure people have a choice; but you also have to get the most bang for your public service buck, so to speak. So while each of these programs have their own merits, they also have their own costs.

If you’d have asked my opinion before I looked into these programs, I would have told you that there’s no way these programs could do any good. But they do. All the more reason why none of us should make decisions without knowing as many of the facts as possible.

I’m learning a whole new alphabet soup of acronyms this year, but I’m glad I am. People deserve to get the assistance they need in living the best life they can. And if I can, I’d like to help them do that.

In..cre…ment…al…Change

So, you might have seen this news from Eli Lilly and Company this week…

Lilly Diabetes Solution Center Now Open to Help People with Insulin Affordability

If you haven’t read it yet, here’s the short version: Lilly Diabetes has set up a dedicated unit with the purpose of helping people who are having trouble covering their insulin costs.

This is just my viewpoint, and you are free to disagree if you like. I’ve considered this announcement with the old Pros and Cons exercise. First the Cons, then the Pros.
 
 
Cons

– When I think of the term “Diabetes Solution Center”, I think of a mythical place where I’d go to be cured of this condition. That would make insulin a hell of a lot less expensive.

– Insulin is too expensive, price increases have been far too frequent, and we can measure Lilly’s revenue from insulin in billions of dollars. Per year. Why not just lower the price?

– You can only access the Diabetes Solution Center by phone. And it’s not a toll free call. In addition, the Diabetes Solution Center is only open from 9:00 a.m. to 8:00 p.m. Eastern time (US) Monday through Friday. That’s 6:00 a.m. to 5:00 p.m. on the west coast, and 3:00 a.m. to 2:00 p.m. in Honolulu.

– Most people, especially vulnerable populations, only find out about price increases when they go to fill their prescriptions. Many pharmacists, because of contracts they sign with Pharmacy Benefit Managers, aren’t allowed to inform patients of the Diabetes Solution Center. That’s what’s known in business circles as a “gap”.
 
 
Pros

– The day before this announcement, Eli Lilly & Co. didn’t have this option available to patients who struggle to afford the insulin they need to live.

– Lilly is spending money on technology and manpower to staff the Diabetes Solution Center.

– I think, and this is just my interpretation, that Lilly Diabetes is finally coming to grips with the fact that insulin affordability and insulin access are major issues. You can opine on how much they have to do with insulin affordability in America, but again… no one is holding a gun to their heads to force them to do this.

– If one person, or two people, or a hundred people are helped so they feel less burden, pay less for insulin, get more assistance in meeting their deductible, the Diabetes Solution Center will be a godsend for those who are impacted.
 
 
As much as it pains me to admit it, we were never going to go from non-affordable insulin to affordable insulin overnight. This move by Eli Lilly & Co. stops far short of what almost all of us want. But at least it’s a move in the right direction. Incremental change is still change.

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