A dog’s life.

I’ve spent a lot of time at home this week, hanging out with the dog and the cat, and another dog that has been here for an extended sleepover. The dogs, especially, seem to have a certain calmness about them (most of the time, anyway). They don’t seem to be burdened by many of the things I am concerned with.
dogslife
Dogs don’t seem to worry about too much. They sleep when they sleep, they eat when they eat. They’re happy if you’re watching CNBC, or Drunk History, or the ballgame on TV. Their pursuits include fully stretching out on the floor, chasing after balls in the yard, and playing tug of war over a toy. If you’ve had a difficult day, they seem to empathize, but they’re also happy waiting nearby in case you need them.

The dogs that have been my companions this week don’t live with diabetes and all of the crap I live with as a Person With Diabetes. They don’t have to check their blood sugar 7 or 8 or 10 or 12 times every day. They don’t have to guess how many grams of carbohydrates are hiding in my noonday meal, or how many units (or partial units) of insulin are required to counteract the carbs entering my system, and they don’t have to remember to bolus before they eat those carbs.

These dogs get excited about dinner, and walks in the park, and the occasional mailman or jogger that goes by. But the rest of the time, they’re good just hanging out. They don’t have to live with the frustration of high glucose readings and doing the detective work to find out why the readings are high.

They drink water when they’re thirsty. They’re not forced to drink water to help get their blood sugar to come down. They’re not into why my insulin is so freaking expensive. They don’t have to fight with insurance companies to get them to cover devices like continuous glucose monitors and insulin pumps and enough test strips to be able to live the best life I can while standing in for my own pancreas.

Dogs are okay being lifesavers alerting us to highs or lows. Dogs are okay with just being part of the pack, and enjoying the occasional bacon flavored treat. Life isn’t much more complicated than that, because it doesn’t have to be more complicated than that.

I want that. I want a dog’s life.

The Diabetes UnConference Atlantic City.

Another Diabetes UnConference is in the books.
unconferenceac
This one was the first UnConference on the east coast of the USA. It will not be the last (more on that in a minute). Resorts Hotel and Casino was very kind for our few days along the New Jersey coast, and other than scorching late summer temperatures, the weather was great. Beautiful sunrises and sunsets.

What made the weekend really wonderful was the same thing that makes every UnConference special: the people.

There is something refreshing and honestly, for me anyway, necessary about getting together face-to-face with others who live with diabetes every day, discussing the things that are important and frustrating and funny and scary and sweet (no pun intended) about something that we understand better than anyone else: our own diabetes.

Each Person With Diabetes in attendance knows their life with diabetes better than anyone, and each attendee was able to convey their feelings and expertise on a variety of psychosocial aspects of living with this condition in a unique and respectful way. The format, along with our social media blackout during sessions, made for a safe place where everyone felt Welcomed, Valued, Respected, and Heard. Each Person who Loves Us (PLU— it’s a thing) in attendance was able to share, also in a comfortable, respectful, safe space, how it feels to share a life with a PWD.

As a facilitator in many of the sessions, I was once again humbled by the openness of people who have lived with diabetes for decades, and people who have lived with diabetes for just a few years. Many from the USA, and some from other countries, all seeking to understand themselves, each other, their jobs, their lives at home, and so much more. In the process, friendships were made, existing bonds were made stronger, and in one case, actual physical assistance made all the difference in a difficult moment. When the moment was over, it meant so much to be able to spend time with people who understand… people who get me. Priceless.

I think we all learned a lot. We certainly shared a lot. I think we all understand how important it is to:
#FindYourTribe

The next Diabetes UnConference will be at the Westin Las Vegas February 10, 11, and 12 next year. And I’m happy to report that The Diabetes UnConference will be coming back to the east coast in October of 2017. It will be in the Washington, DC suburb of Alexandria, Virginia. Details to come at a later date. If you’re looking for a little assistance to get to Vegas, the scholarship window is now open.

There is nothing like finding a safe, comfortable place to discuss the things that are most important to you. Especially when you live with diabetes, or you’re close to someone living with diabetes. Our pancreases don’t function properly. Our hearts are beautiful.
 

It’s time for our government to protect its citizens.

I’m so mad I could spit.

I watched an interview yesterday on CNBC with the CEO of Mylan, which is coming under fire for enormous price hikes on their Epipen product, which helps people suffering severe allergic reactions stay alive. Now it’s pay up or stay alive. Sound familiar?

CLICK HERE for the interview, then come back.

Well, it looks like common sense isn’t lacking for just male CEOs in this country. At first glance, you might think this is a woman who doesn’t get it. But she gets it, far more than she tries to show in this interview. Only what she gets is different from what the rest of us who depend on a drug to stay alive gets.

Don’t give me platitudes about how the entire healthcare system is failing us without giving us detailed examples of how your company is not part of the problem. And announcing a “rebate program” for patients doesn’t count. It’s a way to hold people at arm’s length, making them fill out more paperwork, make more phone calls, dangling the carrot just out of reach. It’s also probably a tax write-off for you, though probably not as big a tax write-off as moving your “headquarters” out of the USA was. Believe me, there are MANY people who are more frustrated by this than you are. “Facts are inconvenient to headlines”? Really?

This goes back to my post from last October. This CEO’s constant misdirection on the topic of drug overpricing shows that Mylan doesn’t really care if someone dies because they can’t afford an Epipen. Why should they care? If there are ten patients with severe allergies in a room, and one of them dies because they can’t afford an Epipen, what does that mean? If I’m Mylan, it means I have to ship less product, but since I’ve raised the price of my product 600 percent in the past few years, I’m still making more money than when I had ten patients paying the lower price. Win-win!

“Pharmacy Benefit Managers” (yes, I put quotes around that faux title) that work for prescription providers like CVS/Caremark and Express Scripts are to blame too. They’re trying to get as much money as they can, and they’re pretty successful, even if no one can think of a single reason why their jobs are needed in the first place.

Recently, Slate.com has weighed in on drug overpricing to note that this kind of practice is costing insulin-dependent diabetes patients dearly too. Welcome to the party, Slate… where have you been?

So the questions are the same as before. What can be done? How do we get Congress to act? How do we get companies to stop forcing patients to choose between rent or complications, keeping the lights on versus dying?

It is abundantly clear that companies don’t care about anything except revenue. They will not budge, nor will they stop this unethical and unpatriotic practice until they are forced to do so.

I just can’t go into another post about what the diabetes community needs to do to reverse this setback for patients. We’re all tired of this, we’ve seen more than enough examples of excessive greed, and it’s starting to wear on us. But I can tell you what is needed:

The United States Government must get involved to protect patients reliant on drugs to stay alive.

This means the three branches of our federal government… the Legislative, the Executive, and the Judicial, must work together to determine and support policy and pricing that protects patients from seeing these kinds of increases in the future. Our government actually does have the power to do something about this, and if they’re unwilling to act, they’re as much to blame for needless complications and deaths as the drug companies and the prescription providers.

Here are a couple of ideas. I’m just spitballing here, but what the heck, it’s my blog. Let me know what you think:

Limit price increases. Simply put, enact legislation that limits how much of an increase can be implemented for drugs. All drugs. Period. With no exceptions. This is the one item where people might cry “socialism”, to which I say no one ever said anything about no profits for companies. Mylan was already making a huge profit on Epipen before their recent increases. Lilly was already making a huge profit on Humalog. Novo was already making a huge profit on Novolog. And Express Scripts was already making a huge profit on all three.

Are your company’s headquarters outside of the USA? Then the U.S. Government should set the price. Mylan (and many, many other companies, including Medtronic) have gone through a process known as “inversion”, where most or all of a company’s execs and offices remain in the USA, but all their paperwork lists them in a lower tax country, like Ireland, for example. Fine. You want to do that? The federal government should now be allowed to set the price on all medications you sell inside our borders. Actually, let’s amend that to say the Feds should set the price on all items sold to patients in my country. You were making a profit already. Enough of a profit to buy a company in another country and then make that company’s “headquarters” your own so you could skip out on paying U.S. taxes. I don’t see why we can’t say, pay taxes in our country or you have no voice on pricing. American capitalism should only extend to American companies. I know, you’re probably worried that they wouldn’t release new drugs in the USA. Trust me: they’re not going to walk away from the biggest economy in the world, regardless of what they say.

Show some guts elected officials. It’s pretty much down to you now. You are going to have to step up and protect patients. Choose to support us through your words and your actions. This is an issue that affects every registered voter in America.

Show us you’re worth voting for. #PatientsoverProfit

Juice boxes in the middle of the night.

You know, it’s really hard to get juice from a juice box in the middle of the night.

Think about it… you have to find the juice box (usually in the dark), you have to grab the plastic straw from the side of said juice box, you have to remove the plastic wrap from around the straw, and then you have to poke the juice box with the straw in the tiiiinny little space allocated for that procedure.

That is really difficult to do at one o’clock in the morning when you’re shaking, you’re sleepy, and your vision without all of that would make it hard to see what you’re aiming at anyway.

Well, that was exactly the scenario the other night, and as you can tell, I was successful in the end. But diabetes was also successful in scaring the crap out of me.

My last bolus prior to that was about five hours earlier. Still time for the insulin to affect my blood sugar, but past its peak, I believe. Feel free to correct me if I’m wrong. My last BG check was at 10:30, right before bed. For the record, my meter read 135 mg/dL. Not high, not super low, but okay considering my basal rates do a good job of keeping me pretty steady throughout each 24 hour period.

Yet every once in a while complacency bites me in the ass, because diabetes acts different from the way it acts under 90 percent of the other circumstances I’m used to. Those are the dangerous moments. Those are the frustrating moments. Those are the critical moments when I just have to ignore everything else and concentrate my focus on doing the one or two things necessary to keep myself alive.

And make no mistake, keeping yourself alive is exactly what you’re focused on in moments like this.

Maybe the circumstances leading up to this event can help explain why my blood sugar tanked in the middle of the night. But even if they could, it’s like much of the science surrounding diabetes. There’s a link, but you have to look really hard to find it, and when you do, you find that the details are so complicated that it would be hard to remember all of it later on.

When our brains are overloaded with math, prescriptions, doctor visits, and remembering to bolus at the right time (among other things) already, it’s easy to see why most of us don’t get too invested in the causes of our hypoglycemia. It’s very complex, and each scenario could be different anyway. If there’s something that really stands out, like over-blousing or insulin stacking or not factoring in exercise, we identify it and correct it next time. Anything deeper than that, and we’re likely to lose track of it.

Solving lows like this is often like learning the engineering behind sending a rocket into space. There’s so much to know, you can’t possibly learn it all on your own. And unlike science, diabetes changes over time, so even if you learn everything behind today’s low, it might not help you with the one you experience six months from now.

I’m glad everything turned out okay in the end. I worry about those who experience the same circumstances where things don’t turn out okay.

And I still worry about what I don’t know.

Like these links, Friday style.

I’m very excited to share these links with you today. One about funding diabetes advocacy, and two about two of my Favorite People to Follow on Social Media. Here we go:
 
 
To begin with, Dexcom employees have just started up a new charitable organization called Dexcom One Step Ahead Foundation. The One Step Ahead Foundation will be funded by Dexcom employee contributions and fundraising efforts by Dexcom employees, and it aims to support grants of $10,000 to $50,000 to “…advance the missions and purposes of tax-exempt organizations that provide services and programs to people living with diabetes and their caregivers”.

I’m all for funding diabetes advocacy. A new infusion of funds like this can help make a real difference, so a big Friday Thank You Dexcom employees!

There’s a short window for this year’s grants… proposals must be submitted from August 22 through September 28. Grant awards will be announced during Diabetes Awareness Month in November. Sharpen your pencils!

To find out more or to submit your own grant proposal, you’re encouraged to contact Dr. John F. Gallagher at drjohnfgallagher@gmail.com. To read more about this generous initiative by Dexcom employees, CLICK HERE.
 
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Those of you who know me know that I live in Baltimore, but did you know that I am not the most popular or the best health blogger in my area? Not by a longshot. Molly Schreiber lives with Type 1 diabetes and Rheumatoid Arthritis, and she has a terrific blog called And Then You’re at Jax. She’s very active in both the Diabetes and RA communities online, and her blog reflects that. She’s also very nice, and she’s pretty funny at times too.

This week, Molly was featured on The Mighty website with her description of her newfound dismay over local businesses that do not have very friendly entrances.
Check this out and see what I mean.
 
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I met Mariana Gomez back in April at the Medtronic Diabetes Advocates Forum. Her friendliness, paired with her passionate advocacy on behalf of people living with diabetes in her home country of Mexico and beyond, was quite impressive, and something I won’t soon forget. Everyone over at her own blog and at EsTuDiabetes probably knows what I mean.

Mariana is a real gem. So I want to share this little piece that DiabetesMine shared on Mariana this week (and don’t forget to look for the one on Molly too!).
If you haven’t heard of Mariana yet, this is a good place to learn about her and her life with diabetes and her impact on the Diabetes Community.
 
 
That’s all for now… but I can’t leave without linking to my own blog, reminding you to nominate your favorite Champion Athlete With Diabetes (even if it’s you) so they can put their very own medal around their neck. Why should the Olympic athletes have all the fun?