Monthly Archives: July 2019

Friends for Life 2019

July 24, 2019 – 10:11 am

For many of us living with diabetes, being together and supporting one another through the day-to-day grind of a chronic condition is what makes us feel like we have meaning.

The notion of that statement was on full display last week at Children With Diabetes’ 20th annual Friends for Life event in Orlando. Young and old, newbie and veteran, all took turns sharing (both lterally and figuratively) and supporting one another.

I was at Friends for Life as a member of CWD’s IT team, helping to set up projectors and sound in rooms, and getting speaker presentations ready to go. Full disclosure: Children With Diabetes paid for my accommodations so I could work on the IT team at FFL. All opinions are my own.

When I think about it, I’ve probably been to four or five out of the last six or seven of these gatherings. But… I’ve never been there as a participant. I’m always working. First it was MasterLab a couple of times, in and out in a day or two. Then I manned the DPAC booth in the exhibit hall for a couple of years. Now, IT and AV tasks.

I say this so you’ll know that my observations are from someone who didn’t attend everything, or really anything, but watched as people who did experienced their best week of the year.

This past week, I saw kids happily run from place to place with smiles on their faces, knowing that no one was going to try to stop them from what they were doing because of their diabetes.

I watched teenagers as they learned to grow into bigger, better versions of themselves, knowing that they will have support from lots of friends and family along the way.

I saw a meeting room packed with people learning about DIY looping, and then participating in a looping workshop that was so popular its time was extended, and the next session, scheduled to take place in the same room, was moved to accommodate the effort.

I saw passionate advocacy sessions led and attended by people who want so much to make a positive impact for everyone living with diabetes, and to teach and learn how to do so.

I witnessed hugs and handshakes. Side conversations and inside jokes. The deep sighs from first-timers who are just starting to rein it all in, and the knowing support from veterans who have been there, and then some.

Behind the scenes was a dedicated staff of individuals, working registration, as room captains, in Sports Central, on the IT team, and handling a number of other roles with empathy and service toward all those attending.

Altogether, it made for an outstanding week of education, networking, and social events that isn’t seen anywhere else in our community. That’s why Friends for Life is so special.

For my part, I didn’t get to spend nearly enough time with anyone newly met or that I already knew. Weeks like this have a way of just flying by. To anyone who’s time was short with me, I’m sorry… I’ll try to do better next time.

For so many kids and adults who have diabetes in their lives, Friends for Life is their safe place. Their unique environment. Their hallowed ground.

Eleanor Roosevelt once said, “The future belongs to those who believe in the beauty of their dreams”. A couple of decades ago, there was a dream, and for the 20th time, it came true, for everyone at Friends for Life Orlando.

By StephenS | Posted in Events | Tagged , , | Comments (1)

Enjoy it While it Lasts

July 10, 2019 – 10:11 am

I’ve seen the TV news reports. I’ve read the excellent piece Mike Hoskins wrote at Diabetes Mine.

I’m excited that people are able to go to Mexico or Canada and get insulin at a cost that’s far less than what we pay here in the good old USA.

Enjoy it while you can, folks. Because the thing is… it’s not sustainable.

The current environment that allows people in the USA to go to neighboring countries, purchase insulin, and bring it home for personal use will eventually come to an end.

The reasons for that are many. First among them is that Canada and Mexico negotiate the price of insulin for their citizens. Did you get that last part? For their citizens. Not for citizens of the United States, where our government leaves it to the sellers to determine the price, and the patients to pay the price.

Canada and Mexico will not keep negotiating the price of insulin so they can just allow U.S. citizens to come across the border and pay less. Let’s be honest… they’re being extremely nice to us right now, letting us take advantage of what they’ve worked hard to establish for patients in their countries. Especially given the current political climate, those opportunities may be limited in the future.

Let’s also remember that while a country like Canada may negotiate the price of drugs and devices, the drugs and devices themselves are distributed in specific quantities based on how each province manages its own health care. Ask anyone waiting for an insulin pump or CGM in the Great White North how that’s working for them.

Meanwhile, the citizens of Canada, while getting pretty good health care overall, are paying a fair amount in taxes for the privilege. So, in essence, they’re helping to pay for your low-cost insulin too.

And what if pharmacy benefit managers in the USA catch on to this? They could potentially use their considerable lobbying power to get the government here to clamp down on importation of the drugs they’ve worked hard to establish profit margins on. They won’t give that up without a fight.

Notice how I haven’t mentioned insulin makers yet? That’s because in every other country except the USA, they don’t have to go through pharmacy benefit managers to sell their drugs. For all we know, they might be making a healthy profit elsewhere while PBMs drive the price higher and higher here in the States.

If you’re set on crossing the border and getting insulin sometime soon, I’m not going to stop you, or even complain about it. But don’t expect it to last.

While you’re on the road home, take a moment to thank the governments of Canada and Mexico, and their citizens, for your good fortune.

And when you get back, pick up your phone, write an e-mail, and ask your own government why we don’t have it so good here.

By StephenS | Posted in Uncategorized | Comments (3)

That Time of Day

July 3, 2019 – 10:11 am

I don’t know what it is about that time of day, but…

There’s something about 4:00 to 6:00 p.m.

It seems like every single day between 4 and 6, my blood sugar takes a nosedive. Doesn’t matter what I’m doing, doesn’t matter where I am. It’s a strange, strange thing.

This has been happening for years. It goes back over ten years, in fact. Some things have stayed the same during that time, but some have not.

I still work for the same company, though I’ve worked in my current office location for almost a decade. On the other hand, I don’t go to the office five days a week like I did back then. Now I work two days each week from home, and the lows happen on those days too.

On the days in the office, I have about a half mile walk from there to catch the train home. Typically, between the time I leave the office, walk to the subway, get on the train and come home, my blood sugar will drop 50 to 80 points. When I work from home, it will still drop 30 to 50 points during the same time of day.

I’m not as active as I was back when I first noticed this phenomenon. I’m still fairly active for someone my age, but let’s face it, I’m not as young as I used to be either. Who is? My blood sugar is still reacting to this time of day like I was on the spin bike for two hours straight.

Before you say it, I adjusted my pump settings long ago. Between 4:00 and 6:00, I’m getting half a unit of insulin per hour. That’s it. And most days, I could just suspend the damned thing for two hours and I’d be just fine.

One of the hardest things to explain to people who haven’t had diabetes in their lives is the constant changing nature of our endocrine systems. It’s like, they hear you when you say diabetes isn’t “set it and forget it”, but they really don’t understand that it means I need 1.6 units per hour in the morning, and less than a third of that (or less) during those two hours.

And truly, even the regular basal settings on the pump aren’t perfect for each moment of the day, because every day is different, right? Stress, no stress, exercise, diet, caffeine, alcohol, and any number of other things can affect my BGs from day to day, minute to minute.

But if I had to pick a time where my diabetes is most consistent, I’d have to say it’s during that magic time between 4:00 and 6:00 p.m.

By StephenS | Posted in Random Glucose | Tagged , | Comments (1)