Category Archives: Diabetes

Room full of icons.

July 9, 2014 – 10:12 am

MasterLab

I was fortunate enough to attend the Diabetes Advocates MasterLab in Orlando last week. I was there thanks to a scholarship provided by Diabetes Hands Foundation. My thanks to everyone who made this event possible, and made it possible for me to attend.
 
 
This is about the experience. Showing up at an event like MasterLab, taking place in the middle of the Children With Diabetes Friends For Life conference, means a lot of potential D-celebrity sightings. At the same time, I’m there for a reason, and it isn’t to be a fanboy (I really hate that term, but it’s quite descriptive in this case).

Knowing I was going to see some amazing writers and diabetes advocates that I had admired from afar but hadn’t met yet definitely had me pumped up as I made my way to Orlando. I can’t say I felt intimidated. I’ve been in rooms with important people plenty of times. I just try to be as nice, as polite, and as kind as I can, and you’re either going to talk to me or you’re not. No big deal. My worry is always that I’m going to meet someone who thinks I’m annoying, or that I’m keeping them from something they feel is really important. If I did that to you last Wednesday, I’m sorry. That was not my intent.

The real truth is that for me, attending MasterLab was an emotional experience. On a number of levels. Including and especially on the personal level. So please allow me a moment to get all fanboy link-a-palooza on you. I may not cover everyone I encountered here, but that doesn’t mean I don’t value you… it only means my memory sucks.
 
 
Before I came down to Orlando, I knew that Manny Hernandez was a big deal. It wasn’t until I actually met him that I realized the magnitude of his personality. We’ve got a good person helping to lead the charge.

I did meet two people I hadn’t heard of before Wednesday. These two people sat at my table. This is the only photo I got of any of the special people I met during MasterLab.
DSC01624

Mike Ratrie is a media publisher by trade. He’s also been a Type 1 for forty years or so. He’s smart and quick-witted and fun to talk to. During one of the breaks, we went across the hall and gave blood for celiac screening and other testing that the TrialNet folks were doing. Sia Figiel is originally from Samoa. She’s living with diabetes, and she’s lost over 100 pounds in the past year. Lately, she’s been participating in a CNN-sponsored project called Fit Nation. She’s one of six people chosen by Dr. Sanjay Gupta to train for a triathlon in September. Each participant is dealing with a serious health condition. Sia’s story is amazing, full of bravery and resilience. She sounds like she’s doing great. Here’s a video of her and the other Fit Nation participants from back in February (Sia appears near the end– sorry, I couldn’t get it without the ad at the beginning).

Christel Marchand Aprigliano reminds me of my mother-in-law (some fanboy comment, eh?). Really, I mean that in a good way. My mother-in-law was a good and kind soul who was always glad to see you, and always made you feel like the most important person in the room. Everything good about Tish is everything I learn from and admire about Christel.

Another writer I enjoy reading is Sue from Diabetes Ramblings, who’s living with Type 2. I was really happy to meet her since she was the one who wrote me nominating the daughter of a friend for one of our Champion Athlete With Diabetes medals. I don’t think I saw her not smiling whenever I saw her. Something like this has that kind of effect on you.

Another Type 2 present was Kate Cornell, from Sweet Success. As we speak, Kate is collaborating with Laddie Lindahl at Test, Guess, and Go on a series of Type 1/Type 2 conversations that are already leaving me on the edge of my seat. I think this event really got Kate’s advocacy mojo going. It will be interesting to see where it takes her.

When I was getting set up in the meeting space that day, I was looking for a wi-fi password so I could do some live tweeting from the event. The people at the next table appeared to have everything up and running, so I decided to ask one of them if they had a password. I tapped on the shoulder of the person with their back to me, and Meri Schumacher turned around. Umm…. Hello Icon. I don’t generally read blogs written by parents of children with diabetes, but Our Diabetic Life is something I read often. Simply put: Sometimes the written word moves you, even if you don’t have kids.

Speaking of awesome D-parents, Tim Brand came up and introduced himself, and unfortunately for me, I didn’t spend enough time talking to him. I always like to hear how people got to where they are at a gathering like this, and I would have liked to hear Tim’s story. Next time I hope. In the meantime, I’ll keep following his tweets and reading his excellent blog posts as he continues to advocate for the two of his four children who are living with diabetes.

When I found out Alanna Swartz was there, I knew I had another person to add to my must-meet list. Alanna is making a career out of outreach and advocacy for people like her and me by serving as outreach manager for JDRF Nova Scotia. Her blog is like many others… when you read her story, you sit up and say “me too!”. I look forward to reading about her for a long time to come.

It was a very nice surprise when I met Briley Boisvert. When I was her age, I thought I was so smart and creative. But Briley is so much smarter and more creative than I could have dreamed about then. I’m kinda jealous, to be honest. That phrase “I wish I knew then what I know now”? That’s what I think of when I read her blog.

And Jess from Me and D said hello! I think she’s got one of the biggest smiles I’ve seen in a long time. If you want to read what it’s like to really live on the diabetes front lines, you should visit her on the web. She tells it honest and with feeling.

Like everyone else, I enjoy reading Heather Gabel’s blog entitled Unexpected Blues. To my chagrin, I was only able to say a brief hello. Maybe my biggest regret of the day was not getting five minutes to sit down and listen to the voice that puts all those great words on my screen.

I was negligent last August when I attended the DSMA meetup in Philadelphia. I knew Sara Nicastro was in the room, but I didn’t say hello. I’m glad I was able to right the wrong this time. I’m also glad that Sara is so patient with me, because it seems like every time I’m involved in a project with her, I always screw up something. Hopefully, I’ll get the June Best ‘Betes Blogs post right the first time.

One of the people I really wanted to meet that day was Kim Vlasnik, writer of the first diabetes blog I found online. When I found it about three years ago, I was in a deep, very not happy place. It was really important for me to tell her how much it meant to me that I found her blog, what it touched off, and that who I am today is a direct result of finding her online back then. That was an emotional moment for me, though I think I hid it well. Oh, and later in the day, I was able to duck into the exhibit hall and see the You Can Do This Project booth. Another emotional moment for me. And I picked this up:
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I ain’t takin’ it off either.
 
 
There were also many whom I had met before and were thrilled to see again in this space. People like Karen and Cherise and Kelly and Scott and Kerri and Christopher always light up every room that they enter.

What’s really nice (and yes, I get emotional about this) is the feeling of acceptance I felt that day. With acceptance, I don’t have to have my guard up all the time. I could physically feel the stress going away as the day went on.

So thanks for letting me get all this out. I’m lucky, and grateful that my D-associates are a brilliant, diverse, and accepting crowd. They make me want to be just like them.
 
 
 

By StephenS | Also posted in Advocacy | Tagged , , , , | Comments (7)

It makes my heart hurt.

May 2, 2014 – 9:08 am

I was alerted to this by a co-worker the other day. So when I had a moment over the weekend, I drove into the city, to the corner of North Avenue and Greenmount to check it out myself. Then I drove around a bit.

DSC01476

These signs are up on nearly every street corner in some lower-income parts of Baltimore right now. I couldn’t wrap my head around this idea when I first heard about it, but now that I’ve seen that sign (and many others), something is really bothering me.

So I did some research. I found that companies buying test strips, then reselling them, is nothing new. It’s also legal, if whoever is reselling the strips has FDA approval to do so. In fact, Diabetes Mine did an important story on this almost two years ago (they get quoted about once a week here, and twice on weeks with days ending in Y). Mike Lawson did the investigating and wrote the story, and it gave me chills.

It also had me asking questions. Questions like: What kind of screwed up healthcare system do we have in America, when people who need help have trouble getting it, and people who prey on others with very little cash can operate with impunity? How does all of this work? What kind of profit is there in this?

Well, the money must be good at least. Because there are dozens of sites online that will buy up your test strips. And then resell them. Some are operated by individuals, some by actual companies.

As I mentioned, I’m very distressed by the presence of these signs in my community. I absolutely hate the idea that people with very little will feel the need to take shortcuts on their diabetes management just so they can pay the light bill. It makes my heart hurt.

I feel like there must be a special place in hell for people who exploit this kind of weakness. Rather than helping someone who may really need it, they’re helping themselves to profits on the backs of those who can least afford it, financially or physically.

So I think I’m going to see what I can find out about the organization behind the phone number and the cheesy signs. I can’t really consider myself an “investigative reporter” type. I don’t have any idea what I’ll find out, if anything. But I can’t let go of this yet.

More to come.
 
 
 

By StephenS | Tagged , , , | Comments (7)

I’m looking at you…

April 30, 2014 – 9:06 am

I’m looking at you… you person, who has up until now procrastinated and not submitted comments on blood glucose meter and test strip accuracy to the U.S. Food and Drug Administration.

You have one week left.

SSGuidance

For one more week, two draft guidance documents are open for comment from the community at large. One is for equipment used in a clinical setting, like doctor’s offices and hospitals. The other has to do with the meters and strips we all use as consumers (read: patients).

Due to enthusiasm from the Diabetes Community, the FDA has added an extra month to their deadline for people to leave comments on these important documents. But that extra month ends next Wednesday.

Have you commented yet? (Hint: you don’t even have to be a person with diabetes to comment)

Have you spread the word about this important draft guidance?

Is the answer c) None of the above?

Don’t worry. The important information on the draft guidance, and how to leave comments, and even some sample text you can use when commenting, is all available on the Strip Safely site.

Let’s say you’ve left comments already. Well… Have you read the information about third party strips documented so well at Strip Safely and over at Diabetes Mine?

Did you know you could add additional comments expressing your concern over third-party accountability? Guess how long you’ve got to do that? That’s right… one more week.

Don’t miss out on lending your voice to this important issue. It is needed and wanted and appreciated. So please, take this not-so-gentle reminder to heart, and help ensure better accuracy of the glucose meters and test strips that are used multiple times every day. Time is running out. Procrastination is not an option any longer.

Many thanks to Christel Marchand Aprigliano and Bennet Dunlap for leading the charge up the Hill of Guidance.
 
 
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By StephenS | Tagged , , , , , , | Comments (1)

Same routine, different location.

March 24, 2014 – 10:20 am

I toyed with the idea of headlining this post “Oops, I did it again”, but that just seems cliche now. And a little sad. And who could ever confuse me with Britney Spears? Okay, I’ll just stop now…

Saturday, I did it again: I donated blood.

According to the American Red Cross, “Diabetics who are well controlled on insulin or oral medications are eligible to donate”. When I learned this over a year ago, I was thrilled to know I could again participate in something I consider a civic duty.

This was the first time I had donated blood outside of my work environment, where they usually hold 2 or 3 blood drives every year. Instead, this time, I went to the local Red Cross office, which, thankfully for me, was only about a ten minute drive from home. I arrived early and was greeted by a friendly person who asked me to sign in, then chided me for looking at my donor card to double-check my blood type. “You should always know your blood type. It’s critical information in times of emergency”.

In my defense, I did know my blood type, but I wasn’t 100 percent sure of it until I looked again. For the record, I’m an O Positive. I think that’s kind of rare, because as soon as I’m eligible again, the Red Cross will start calling me, asking me to come back, the vampires. I joke all the time that the only two phone calls I ever get are from my wife and the Red Cross.

Only they don’t look like vampires down there. They’re just ordinary people going about their jobs, complaining about the bad children’s music blaring from the television in the waiting area, comparing nail polish, and talking about their husbands and wives. They make the whole process easy, comfortable, and as painless as possible.

It was about as nice an experience as you can have (sans the bad kiddie music) while having blood drained from your body. I generally don’t have any of the post-donation wooziness that some people experience after giving. But Saturday, I did have one or two moments where I needed to find a chair for a couple of minutes. Too much running around, I guess.

For the record, that makes four blood donations in a little over 13 months. It’s true… I have Type 1 diabetes and I can donate blood. And to quote Martha Stewart (which I thought I’d never do on this blog), that’s a very good thing.

Curious about whether you can donate blood yourself? If you’re in the USA, you can find all the info at redcrossblood.org, or send me an e-mail using the link in the upper-left corner of this page and I’ll tell you what I know.
 
 
 

By StephenS | Also posted in Random Glucose | Tagged , , | Comments (3)

A window of opportunity is closing.

March 21, 2014 – 10:37 am

I really didn’t expect to write about this again, but… This still needs to be talked about. And for various reasons, this may be my last chance to write about it before our window of opportunity closes.

The U.S. Food and Drug Administration is in the process of drafting guidance for manufacturers of blood glucose meters. The guidance will be for future production of both over-the-counter meters (the ones we, as individuals, use), and the ones used in a clinical, point-of-care (i.e., hospital) setting.

As of right now, the FDA has opened up these draft guidance documents for public comment.

In other words, they want our input, and they’re even welcoming it.

But they will only accept our input until April 7. So please… Right now… Do something for me:

Go now to this one page, follow the instructions, take two or three minutes, and add your voice to something that will be extremely meaningful to me for years to come.
 
 
As I publish this post, only 167 comments have been posted on the OTC guidance.

As I publish this post, only 101 comments have been posted on the point-of-care guidance.

Every man, woman, and child in America with an internet connection should be commenting on this guidance.
 
 
Are you living with diabetes? Is someone you care about living with diabetes? Do you work with someone living with diabetes? Do you drive on a roadway with someone living with diabetes? Do you interact ever with someone living with diabetes? Are you starting to understand why this is important and critical and time-sensitive?

Maybe you don’t care about making meters more accurate. Or maybe you do.

If you’re living with diabetes, improving meter accuracy is important to you, and you know it, and you can do something about it.

If someone you care about is living with diabetes (and someone you care about is), improving meter accuracy is important to you, and you know it, and you can do something about it.

If you aren’t affected by diabetes at all, improving meter accuracy is important to you, and you know it, and you can do something about it.

Do something about it.

Go now to this one page, follow the instructions, take two or three minutes, and add your voice to something that will be extremely meaningful to everyone for years to come.

Future lives hang in the balance of blood glucose meter accuracy, and you can help win the day.

Thanks again to Christel Marchand Aprigliano and Bennet Dunlap for opening my eyes on this issue and leading the charge up the Hill of Guidance.
 
 
I now return you to your regularly scheduled day.
 
 
 

By StephenS | Tagged , , , | Comments (4)