What’s the ETA?

ETA… Estimated Time of Arrival. It’s almost an antiquated term in today’s english, often passed by in favor of terms like “When can I expect that?” and “What’s your hard deadline?”.

When it comes to diabetes, we’ve almost been conditioned at this point to stop asking when a cure will happen. Many don’t believe there will ever be a cure, and many more believe, but aren’t holding their breath for it.

In fact, hearing phrases like “We’re so close to a cure” or “It could happen in your lifetime” (to someone of my age), or the previously ubiquitous “Within five years” is one of the easiest ways to identify someone not in the know on such things.

Many organizations have, while championing a cure, backed off of anything that might even possibly be construed as a promise of a cure for diabetes couched within a specific time frame.

I’ll admit that this is good, because it keeps people from becoming overwhelmingly disappointed when a cure doesn’t happen within the window in which we might have expected it. Often, it allows us to say that a cure is not imminent, so let’s work on making diabetes easier to manage in the meantime. I am all for that.

But since I’m a both-sides-of-the-coin type of person, I will also admit that not expecting a “just around the corner” cure for diabetes, sometimes, feels like an excuse to hold off finding a cure for even longer. Sometimes, just to develop more products. Things that will keep us paying through the nose, that will make things easier for People With Diabetes, but will siphon off money for other things that family members of People With Diabetes could really use.

It’s the skeptic in me that asks: How many People With Diabetes can’t afford to send their kids to college due to the fact that their out-of-pocket medical expenses range in the thousands of dollars each year? How many can’t afford to keep up with repairs to their homes? I’ve been one of those people.

I don’t really sit on either side of this question. How could I? I mean, hell yes… I want a cure. I want it yesterday. But in the absence of a cure, I also think that an artificial pancreas system is a remarkable development, and should continue to be funded through to completion. And then improved upon after that.

That’s where I’m going with this post… how do I justify championing improvements in therapy, drugs, and devices, without losing sight of, even a little bit, of the need for a cure? I’m torn when I think about it. I get that little twinge in my gut that has always been a benchmark for me to look at a situation with a fresh set of eyes.

I also have a fresh sense of respect for those who are both working on ways to improve our lives with diabetes, and are still passionate about a cure for this awful disease. I think that’s a tougher tightrope to walk than I’ve been giving people credit for up to now.

My goal from this point forward? Right now, I think it’s to remember that a cure is still incredibly important, and it should be worked on and funded, and should not take a back seat to CGM In The Cloud or Inhalable Insulin or any of the latest developments. It’s important to keep asking: What’s the ETA on my cure? Yet both sides of the equation are important. In many ways, equally important right now.

When we talk about a cure, let’s remember the amazing steps in improving diabetes management that have happened, and are still happening. Likewise, when talking about improvements in diabetes management, let’s not lose sight of the ultimate goal:

The Cure.
 
 
 

PPACA Survives intact.

Healthcare advocates throughout my country were thrilled yesterday when the U.S. Supreme Court upheld the part of the Patient Protection and Affordable Care Act (“Obamacare”) that allowed for subsidies to help patients pay for healthcare insurance obtained through insurance exchanges nationwide.

Had the justices overturned that part of the legislation, something akin to chaos in the insurance marketplace could have ensued, owing to the fact that many who can barely afford coverage with the subsidy probably would have dropped their coverage and risked prosecution for not being covered at all. It might have meant that many who are relatively healthy but still couldn’t afford the coverage without a subsidy would drop their coverage, which would have put insurers in a tough spot, with too many chronic and acute issues to pay for, and not enough money coming in from healthy patients to make up the difference.

The vote of the nine-justice panel was 6 to 3. Chief Justice John Roberts wrote the majority opinion, once again surprising many who thought he was the perfect neo-conservative to lead the highest court in the land when President Bush appointed him to the post a decade ago. His remarks included this little nugget:

”Congress passed the Affordable Care Act to improve health insurance markets, not to destroy them.”
 
 
Imagine that… he goes against nearly every republican in America, using one of their biggest rallying cries to do it: Free Market Capitalism!

The dissenting opinion, given from the bench by Justice Antonin Scalia, smacked of sour grapes, though I guess every dissenting opinion does to some degree. At one point, he got laughter from the courtroom for saying “We really should start calling this law SCOTUS-care”. He also referred to the majority opinion as “interpretive jiggery-pokery”.

Well, I’m just a high school graduate, so I never learned from books that contained such eloquent terms as “jiggery-pokery”, but I really hope that Justice Scalia, or Justice Alito, or Justice Thomas, who also sided with the minority, never have to experience moments where they have to choose between paying for healthcare for themselves or a loved one, and paying the rent. Republican members of the U.S. Congress, for their part, are still vowing to repeal this important legislation. They’ve already tried repealing all or parts of it 67 times.

I will also point out that a day later, our fair republic still stands, and still stands for the right to healthcare for everyone.

If we’re not for that, what are we saying? Really… if you’re against my right to affordable healthcare, are you saying that, although my diagnosis of Type 1 Diabetes is not my fault, I don’t deserve to be able to afford to pay for care, drugs, and devices? Are you saying I should “work harder”, “get another job”, “do whatever it takes”, or adhere to some other catchphrase out of the conservative handbook?

Well, let me quote from another one of your favorite books, the holy bible.
Matthew, chapter 25, verses 44 through 46:

“Then they themselves also will answer, ‘Lord, when did we see You hungry, or thirsty, or a stranger, or naked, or sick, or in prison, and did not take care of You?’ “Then He will answer them, ‘Truly I say to you, to the extent that you did not do it to one of the least of these, you did not do it to Me.’
These will go away into eternal punishment, but the righteous into eternal life.”

 
 
Again, I am thrilled at the result of yesterday’s ruling. I do recognize that the law isn’t perfect, but had the challenge to the law been upheld, it would have been even less so.

Now, as I mentioned on Facebook yesterday, we can… continue to defend this law against all manner of attacks. Hopefully, yesterday’s decision makes defending it easier.

In other news: The Supreme Court just handed down another ruling, legalizing gay marriage nationwide. It’s been a busy week, Justices. Take the rest of the summer off.
 
 
 

Golden Ticket!

You may have seen this already… but just in case you haven’t, take note:

Thanks to Medtronic there is an extra ticket, including travel expenses, available to the two-day MasterLab advocacy workshop in Orlando in just about two weeks.
ML
So… for all of you who ask, “How come the same people always go to these events?”… Heeeeere’s your chance.

Even though I already promised I wouldn’t apply for any scholarships this year (I won’t go into that again), I almost jumped in on this too. But in the end, it seemed too much like a scholarship, and I want to be true to my promise to give someone else a chance this year.

Do you want to go? CLICK HERE for the link to the short survey. There’s a lot to read, and you have to be ready to travel if selected, but what an opportunity!

You have until Sunday, June 28 to submit your responses. After that, no complaining, okay?

I know I’ve said this before, but it’s worth saying again: MasterLab was an transformative experience for me, and it can be for you too.

Last year was just a day. This year, two days, July 7 and 8. Learn… grow… experience… MasterLab.

I will soooo miss being there. I will be thrilled for you if you are there holding the golden ticket.
 
 
 

Hello! Life calling.

I think I’ve had more than a few moments like Saturday night’s.

I think maybe the timing of Saturday’s moment was particularly unique.

We started out by going to a birthday dinner for my sister-in-law (in the yellow shirt in the photo). She’s the Mom of The (former) Live-In Niece (third from the right). We had a great time eating, laughing, and generally enjoying each other’s company.
Sat1

As we finished up dinner, it started raining. By the time we made it out to our vehicles, it was really coming down. About five minutes after we started home, we heard one of the local radio stations announce a tornado warning. By the time we made it home, the tornado warning was gone, but we were still under a severe thunderstorm warning for some time.

The first thing The Great Spousal Unit did when we got home was let the dog out (like he would actually want to go out in stormy weather like that). When she came back inside a couple of minutes later, she said she heard one of the big trees in the neighborhood fall down. If you’ve ever heard a hundred foot tall oak tree fall, you remember the sound, so she knew.

Well, it was too dark out to go and check where it happened, and I wasn’t about to get back in the car again, so we waited until morning to find out where the tree came down.
Sat2

We had just driven down this street, exactly in this spot, about three minutes before the tree came crashing down across the road. Three minutes later getting home– the time to wait at one or two extra traffic lights– and that photo could have included us underneath that tree.

I don’t generally believe in signs. I believe in reminders, though. And I needed this one. Because I already know these things, but I’ve lost sight of them in the general slog to get through each day.

What are the reminders?

Life is short. Don’t be afraid to pursue what is important. Don’t wait to do something meaningful. If people can be helped by what you do, don’t make them wait while you… wait. Because their lives are just as important, and just as subject to the possibility that anything might happen at any moment. You might not get the chance later.

Advocating for People With Diabetes is something I’ve grown into over the past few years. It’s easy for me to feel like what I do doesn’t mean much. Until it means something to someone. Or until I can lead someone to someone else who makes the difference for them. But you never know when that’s going to happen, or when the opportunity will present itself. So you have to be ready.

Also: Never miss an opportunity to experience true, in-the-moment joy while it’s happening. For so many years, I’ve been guilty of recognizing special moments, even in the smallest of things, and moving on with my life like they never really happened. There are reasons for that, not good ones, but I am so guilty of not fully letting myself go for fear that someone will recognize I’m happy and do something to crush it. It’s happened before, and it’s conditioned me to where I felt, I don’t know, like I was 60 or 70 percent happy about something I should have been 100 percent happy about. I’ve been feeling like I’m missing out on 30 or 40 percent of my happiness for a while now. I don’t know if that makes sense to you, but it does to me.

It’s okay to sit on the sidelines for a while, watching the world go by. But don’t sit too long. Live your life. Make it special. For you, and for someone who needs you.
 
 
 

Dude, where’s my motivation?

I’ve got to tell you… I really hated writing this. I’m nervous about publishing this. I don’t enjoy thinking about this or talking about this.

I just have no motivation to accomplish anything related to diabetes right now.

Actually, that’s not true. I have had the motivation to do a number of things, but every time I get ready to do them, I just give up. I think to myself, “Well, maybe this isn’t a good idea, I don’t know if I should do this, maybe I should just think about doing this another time”. Or maybe never.

That’s not like me, generally. I’m more the guy who thinks, “So what? If I want to do something, I should just do it, hopefully I’ll help someone, and I can enjoy it as long as it lasts”. It’s the difference between things being fun, and things being competitive. I don’t do competitive anymore. I don’t like myself when I’m competitive, and I don’t usually do my best then either. When things are fun, I look forward to them, obviously, and yes, I seem to do my best work. Because it doesn’t seem like work. It’s just fun. And I feel a sense of purpose in what I’m doing, like there’s a greater meaning.

But it’s more than that. It’s really more a feeling that I am one step behind the curve, so to speak. Like those dreams where you’re running, but no matter how fast you run, you can’t run fast enough. I hate that feeling.

At the same time, my BGs are on the roller coaster more than they are off. My weight is at a very (for me, anyway) uncomfortable number. And as bad as it sounds, I’m really not interested in working to iron out the wrinkles in my diabetes at this point in time.

I don’t want to confuse lack of motivation, or lack of competitiveness, or a feeling of being behind the curve, with a diminished sense of advocacy. I’ll still fight for my rights as a Person With Diabetes, and for everyone living with diabetes, regardless of my state of mind. There is no time to lose. But there are some things I’ve started and stopped lately, and though they were never even given a chance to be failures, they still feel like failures. That’s bad medicine. It’s reflected in my BGs, how I look, and how I feel about literally everything.

Add to that a work schedule that has absolutely blown up over the past few months and promises to stay that way for the remainder of the year, and, oh yeah, knee surgery and the lack of chances to work out for a few months. I could really use a couple of days off, but nothing is on the horizon. And those workout-high endorphans, well… sometimes they’re just the right medicine. But that won’t be part of my regular routine for some time yet.

It feels utterly ridiculous to be whining about all of this right now. I’m not dealing with anything that anyone else doesn’t deal with, probably more often than I do. When it comes to having to live with diabetes, I’m one of the lucky few who has many options at his disposal to treat, get healthy, and keep on going. I’m just really tired right now, mentally more than physically, and being tired makes me feel less motivated to stay healthy, get stronger, and look for new stories to tell.

Ultimately, I need to downshift into suck-it-up mode and plow through. This is one of those times when I have to remind myself that I’m not doing great, but where would I be if I didn’t try at all?

Perspective: my problems are not really problems. They sure as hell don’t feel like opportunities right now, either. But, things usually go in cycles, and this is likely just a temporary bad cycle. Truly, things could be much worse.

I don’t have any predictions, promises, or insights to share today. I only have my continuing dedication to a better life for everyone living with and affected by this disease. However that happens, whenever that happens, I hope to contribute in any way I can. I want to help, and I want to do it with a sense of empowerment and a joy for life. I want it to be fun again.

Because, why not?
 
 
 

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