Tag Archives: diabetes

Advocacy in the 21st Century.

July 6, 2015 – 9:36 am

Tuesday and Wednesday this week, over 100 people will attend the second MasterLab, presented by Diabetes Advocates and Diabetes Hands Foundation.
Get the agenda HERE.

They will hear from a number of advocates who have accomplished much, inspiring others and moving our cause forward in a variety of very big ways.

But what about the rest of us?

When I speak to People With Diabetes about diabetes advocacy, they almost universally say “I don’t see myself as an advocate”. They explain this by saying that they’ll never be able to do what so-and-so does, and while they do some things, they don’t really consider those things advocacy.

When people say this, I think they’re wrong.

In many ways, that’s the problem with how we view advocacy in our world: We tend to measure any advocacy we perform against the biggest feats of advocacy we’ve ever witnessed. If it doesn’t measure up to that, it’s not advocacy to us. To me, diabetes advocacy has a much broader definition. If it doesn’t, then I think I may need to get out of the advocacy business altogether.
 
 
Let me ask you:

Do you participate in the Diabetes Online Community? Have you learned anything from what you’ve seen, heard, or read?

Do you go to events where speakers talk about new drugs, new research, new technology? Have you ever read a book and learned something you didn’t know before?

Have you ever helped someone in your life understand better what it’s like to live with diabetes every day?

Have you ever written your elected officials to ask for better care, CGMs for persons on Medicare, or funding for diabetes research?

Have you met in person with another Person With Diabetes and just listened to them tell their story?

Have you shared your story, your successes and failures, with even one person? Even a family member or a significant other?

Have you ever offered a helping hand to someone in need of extra supplies, a replacement bottle of insulin, a spare CGM transmitter, or a shoulder to cry on?

Have you responded, truthfully and honestly, to someone who posted something about diabetes, whether it inspired you or pissed you off?

Have you just lived your life with diabetes the best way you know how?

To me, all of those things are advocacy.
 
 
You know, not all of us can raise thousands of dollars for research all at once. Not all of us can donate that kind of money all at once either. When someone tries to shame or stigmatize us, we can’t always get there first with the most anger. Not all of us can go on television or radio, or even a podcast, and bring our message to the masses.

But we are not helpless, and we are not alone, and we are not insignificant.

What we can do is learn. What we can do is share what we’ve learned. What we can do is support others doing the same, in large and small ways.

Because when we do even the smallest thing to advance our cause, we are advancing our cause. My guess is that you are making a difference.

My plea is that you continue to do so.

Care to share your story of advocacy? Leave me a comment below!
 
 
 

By StephenS | Posted in Advocacy | Also tagged , , | Comments (3)

Hello, Mr. Middle-of-the-Night low.

July 1, 2015 – 9:30 am

Well hello there, Mr. Crazy out-of-nowhere-middle-of-the-night low.

It’s been a while, but as soon as I woke up at 2:15, felt strange, and put my hand on the back of my sweaty head (in the air conditioning), I knew you were back.

And it wasn’t just my head: my PJs, my pillow, my bed, everything was drenched with sweat. I didn’t even bother getting my meter to check right away. I just grabbed a juice box and started sucking back The Thing That Brings Me Back Up.

After a small snack and even more juice, about half an hour later, I was staring at 81 mg/dL on my meter.

I’ll bet you were thinking you could sneak up on me, right? You thought I had let down my guard, that I would just sleep peacefully right through it all. Until, you know, I wasn’t sleeping anymore.

The fact that I didn’t, that I actually did wake up and take the necessary steps to save my life, must have pissed you off. Because I had that awful post-hypo hangover that was only partially mitigated by a long, hot shower. Also, I had a 258 mg/dL on my meter this morning.

But that’s okay. I’m still here, Mr. Crazy out-of-nowhere-middle-of-the-night low. I’m still here. I bested you this time. I’m not giving up. And I’ve got my eye on you. So watch it.
 
 
 

By StephenS | Posted in Lows | Also tagged , | Comments (3)

What’s the ETA?

June 29, 2015 – 9:18 am

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.
 
 
 

By StephenS | Posted in Diabetes | Also tagged , , | Comments (0)

PPACA Survives intact.

June 26, 2015 – 10:32 am

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.
 
 
 

By StephenS | Posted in Advocacy, Healthcare | Also tagged , , , | Comments (0)

Golden Ticket!

June 24, 2015 – 9:18 am

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.
 
 
 

By StephenS | Posted in Advocacy | Also tagged , , | Comments (2)